S: Our Young Shoot Chloe Bea 8-23-09
FC: Chloe Bea | 8-23-09 | Tiny Miracle | Our Young Shoot
1: This book is dedicated to our sweet baby girl twins, Leila - You will be remembered forever and always. Chloe - May you always be the strong fighter we know you to be. We love and cherish you both.
2: A Scary Night - August 22nd, 2009 Exactly 44 days after learning we were having girls and being diagnosed with Twin to Twin Transfusion Syndrome. 32 days after undergoing laser ablation surgery to "cure" TTTS. 16 days after administering a blood transfusion to Leila for TAPS. 11 days after learning our sweet Leila Marie had grown wings and joined all the angels in heaven. Saturday night. Dave and I laid in bed watching The Curious Case of Benjamin Button. I was also practicing knitting - my new favorite bedrest activity. At about 10:30 and toward the end of the movie I felt something trickle and thought I'd wet myself. I threw back the covers telling Dave, "I need to go to the restroom." What I saw under the covers terrified me. My gray shorts were soaked and I sat in a wet spot larger than my bottom. Part of the white comforter was between my legs and was soaked a large reddish pink spot. I can pretty confidently say that I've never experienced hysteria in my life - that is before this moment. I cried to Dave, "Babe" but it came out more like a plea. I could barely breathe. I was panting like a dog to try and control myself. Dave told me to stay still and jumped up to call an ambulance. I remember listening to him talking in the other room as I fumbled for my phone to call my doctor. I called the after hours number and was told that they no longer use that after hours service. Seriously!?! I tried the number they gave me and listened to hold music for what seemed like an eternity. Dave came in and told me to call my friend, Angela, to see if she could watch Solana while he started trying numbers. (We never did get through to my doctor.) By this time I was crying uncontrollably. Angela's husband, Jas (who I've never met), answered and I somehow conveyed to him that I was going to the hospital and asked if Angela could come over. He said "yes" but I'm not sure he could actually understand what I said because Angela called back a minute later. I have no idea what I said to her but she showed up about 5 minutes later - at the same time as the ambulance. I remember waving to her lamely as they rolled me out of the house. My first ambulance ride. They let Dave ride with me. He should have followed us but I didn't want him to leave me. They put on the sirens because of the huge amount of fluid and blood I was losing. The EMT then proceeded to give me an IV in a moving vehicle - ironically, the best IV I've ever received! Suddenly, I felt like I needed to poop. I mentioned this and his eyes bulged and told me not to push. Good thing I had Dave's hand to squeeze because that was my saving grace.
3: The hospital. We arrived at the hospital and the emergency was suddenly over. Everyone was so calm. I remember thinking, "WTF?!?!?" Why isn't anyone running around and freaking out? Do you people realize that I'm 24 weeks pregnant and my water broke?! Will someone please look at this faucet between my legs and do something about it? The nurse was calmly placing monitors on my belly for the baby's heartbeat and contractions. She was also tightening the belts to hold them in place and I could feel the fluid gush out as she did so. I looked at Dave like, "What the hell is she doing?" She saw my eyes and told me to calm down - the fluid would come out as it pleased and she wasn't doing anything to hurt the baby. I looked down at what used to be a taut round belly and saw a lumpy sunken-in belly. Has anyone called my doctor? Finally, a doctor arrived to do an ultrasound. He hoped that it was just Leila's sac that ruptured. We were doubtful, though, based on the amount of fluid I'd lost. Leila didn't have much fluid. Chloe did. I could see Dave's face as he watched the monitor. He shook his head and I knew it was Chloe. My throat tightened. Dave called my parents and Leticia to let them know what was going on. It was some time around midnight and my mother decided to fly in the next day. Hope. The doctor gave us hope, though. He determined that my cervix was not dilated and, therefore, I was not in real labor. The tiny contractions I was experiencing were probably just my body reacting to the ruptured membranes. They often have mothers spend several weeks in the hospital after their waters break. They spoke to my doctor and would put me on magnesium to stop the contractions, antibiotics to prevent infection, and fluids to make me feel better. Fortunately, I'd already received the steroid shots to hasten Chloe's lung development. They moved me into my own room and started the drugs. It was about 3am now and they said the magnesium would make me feel pretty crappy so I wanted to go to sleep right away. Everything seemed to be under control so Dave called a cab and went home.
4: Early Arrival - August 23rd 2009 I spent a rough night in the hospital. They weren't kidding about the magnesium making me feel sick. I slept as much as I could but was woken regularly by the nurses who checked on me. I also spent a lot of time listening to Chloe's heartbeat on the monitors. She's always been such a mover and shaker. It didn't surprise me terribly that she managed to move around in my belly with little to no fluid in there. She moved away from the monitors every once in a while and stopped my heart in the process when her little heartbeat faded from the monitor. Fortunately, they would move the monitor around and find her snuggled up in some other corner of my belly. Dave was at home washing sheets from the night before and getting Solana ready. My friend, Robin, picked her up and took her to their house for an overnight stay. Our dog, Bluebell, went to Matt and Dana's house. Dave made it back to the hospital some time around lunch and stayed until going to the airport go get my mom. We joked about all the hospital food I'd eat over the next few weeks and Dave becoming a single parent for a while. At 10:41am I decided to start tracking my contractions because I could feel them now and wanted to make sure they were slowing down. They didn't. Around 6pm they started getting a little stronger and I started getting a little nervous. The doctor checked me and I was not dilating. Very good but I really wanted those contractions to stop. Over the next three hours they continued to strengthen until I was wriggling around my bed in excrutiating pain. I couldn't get up because of my IV and my back was killing me! The doctor said I was 3cm dilated around 9pm and then 5cm around 9:30. They would take me for an emergency C-section. They were talking to me and asking me questions but I don't remember replying. I wondered why they kept coming to talk to me while I was in the middle of a contraction? Did the really expect a coherent answer? In retrospect, I think it was because I was experiencing a constant flow of contractions at that point. I agreed to something, signed something else, and they raced me into the operating room. I won't get into too much detail but I will say that getting a C-section was a pretty traumatizing experience. I had what they call a "classical" cesarian - where they cut horizonally on my belly and vertically on my uterus. It's actually more rare and riskier for me than the typical c-section but necesarry because of Chloe's positioning. It also means no laboring in the future and no VBAC. They told me I'd feel "pressure" during the surgery. I swear I felt every touch and movement the surgeon made. It was brutal - like he was beating me up. I felt like Braveheart! After both babies were out they brought Leila to us. Dave held her and tried to show her to me but to my everlasting shame told him, "not now." The surgeon was still busy beating me up. I was writhing around in pain and just couldn't do anything more than try to keep from rolling off the table. They finally knocked me out and the anesthesiologist told Dave that I must metabolize the drugs differently than most people to be feeling the pain I was obviously feeling. I woke up in the recovery room. Then I had Leila in my arms. She was wearing a beautiful crocheted dress, hat, and booties. She was so tiny and still. I looked at Dave and my Mom and they were both crying. I was not. I remember wondering what was wrong with me. I'd been preparing myself for this moment for a couple of weeks and really really wanted to meet her. I'd cried for her many times before but didn't feel anything with her in my arms. I know now that it must have been either shock or the drugs.
5: After a while they took her away and wheeled me over to the NICU to see Chloe. I was trembling from the anesthesia and my vision was a little blurry but I could see her tiny little body laying in her isolette. I think the top was up. They offered to let me touch her but I was scared of rolling off the bed when I reached for her. I turned down the offer. I could hardly see straight and she was so tiny and delicate. What if I hurt her? The nurse seemed concerned at my refusal to touch her but I didn't care. The last thing I wanted to do was to hurt her because someone else wanted me to touch her. That's all I remember from the night my girls were born. It certainly was not the experience I had planned for. I was supposedto have a beautiful natural childbirth and experience all the love hormones that I didn't get to experience with Solana because of petocin and the epidural. I was going to hold my girls to my breast and Dave and Solana would be by my side. Together we would admire our beautiful new family. Instead, I had to be drugged and cut because of TTTS. And I only have one beautiful girl survivor. I can't hold her to my breast or even hold her at all. She'll endure months in the NICU before we can take her home. I'll never understand why this all happened but I'll never forget. Leila will always be a part of our family and Chloe will always be our little fighter. And Dave, Solana, and I. We'll love eachother through all of this and learn a new family dynamic that includes the NICU as our second home for the next few months. | The doctor took this picture of Chloe just moments after she was born. That's Dave holding her tiny hand. She was jaundiced and extremely bruised from a rough 24 hours of contractions in no amniotic fluid.
6: Holding Chloe - Pure Bliss Sooo...the nurses change out Chloe's isolette once a week. An isolette is the fancy bed she sleeps in (you may refer to it as an incubator). They keep it warm and humid to protect her delicate skin and the reason for the weekly change is mainly for hygene. They want to make sure she's always in a fresh clean environment (and I like that!) But that's not the only reason I like isolette changes. The most exciting reason is the fact that this is currently my and Dave's (if I ever give him a turn) only opportunity to hold Chloe. She's too sensitive to stimulation right now to be handled on a regular basis so we don't yet get to touch her very much at all. I was so excited the first time I got to hold her I could hardly stand it. I couldn't take my eyes off of her. I was a little nervous because she was out of her safe little environment but they wrapped her up in super warm blankets and a respiratory specialist was making sure she was breathing well. She is so beautiful! I can't wait to do kangaroo care! Get stronger baby so Mama can hold you all the time! | Isn't she just amazing! I could have stared at her all night but the isolette change only took them about 3 or 4 minutes to complete. Do I look excited, or what?
7: 9-1-09 Bad Day Chloe had her first bad day today. We had been spoiled. Everything seemed to be going right for her first nine days. I was becoming complacent and getting too used good news. As soon as I walked into Chloe's room I knew something was wrong. There was a second respirator running and she had additional lines running into her little body. The nurse practitioner saw me arrive and followed me into the room. She began to explain everything that was happening and I had to work really hard to maintain enough composure to listen. The tears were already flowing. Here's a summary of her first bad day: - Her CO2 level was too high. Thus, the second (Jet) Respirator to help her get rid of some CO2 - Her blood was acidic. This happens with CO2 levels are too high. - Her O2 level was too low. They raised the O2 level on her respirators to around 59% in order to keep the O2 in her body high enough. (Ideally, she would be at 21% - breathing the same air as us.) - She stopped digesting milk so they stopped her feedings and put her back on an IV drip. - Her white blood cells were high. They think she may have an infection. - Her red blood cells are low. She had a new IV in her foot to give her some extra blood. It's overwhelming to hear all these bad things at once but the nurses didn't seem too concerned. They are treating everything and the doctor said that these problems, while they hope not to see them, are common with babies as premature as Chloe. I couldn't help but think - she could die from an infection... They do several blood draws a day and I got to put my hands over Chloe's head and legs to try and comfort her during one such draw. They have to poke her heel to make it bleed and she was pretty upset about the procedure. She has no voice because of the tubes down her throat but I could see her crying. It was that baby cry/scream where their face turns red. So painful to watch. Tears were pouring down my face as I tried to remain calm enough to support her. It really sucks to watch your baby get poked all day long. I think I spent about 7 hours in her room today. This is emotionally and physically exhausting. Now I know why everyone keeps telling me the NICU is a hard hard place to be. 9-2-09 Randomness Chloe had a pretty good day. Her blood gasses are looking better. The doctor wants to start feeding her milk again tomorrow if her blood draws continue to look good. Great! I spent about five hours with her and it was a fairly uneventful day. We like those days. Unfortunately, they decided to give her more blood to raise her red blood cell count and so they had to put a new IV in because they already took yesterday's IV line out. I'm sure this won't be her last IV but I was pretty upset that they had to put in a new one. I wish they had anticipated needing
8: needing it again and left it in. It hurts me to get an IV so I imagine it hurts her, as well. I feel guilty and embarrassed to admit this but I looked away - couldn't even watch them put it in. Chloe opened her eyes for the first time a few days ago but she's had a little mask over them ever since because she's been under the billi lights. They took off the lights yesterday and covered the isolette to keep her in a dark calm environment. As I peeked in today she opened her eyes A LOT. That was probably the coolest thing I've ever seen. I thoroughly enjoyed watching her little face - it felt like I was looking at her for the first time. She looks so beautiful! That is the feeling of pure joy. I walked to the cafeteria to grab some lunch and on the way back into the maternity building I saw a new mother being wheeled outside by her husband - new baby in her lap. I knew I shouldn't watch but I found myself drawn to the scene. They looked so happy. It put a smile on my face and I just stopped and watched - drawn like a moth to a flame. My mind raced. "What are you doing? You shouldn't watch this. But I'm not upset. They look so happy and sweet. What's wrong with watching?" Then it happened. My face cracked and I was suddenly race-walking (in my post C-section way) to the elevators to hide my face. I knew it would happen. I don't know why I torture myself. Stupid stupid stupid. Dave picked me up from the hospital and we drove to the new house to pay the painter. He's completely finished now and the house looks fantastic! We really bought a fantastic house! I love it can't wait to move and be settled in it! We attended a parent's meeting at our church, where Solana will begin Pre-K on Wednesday. On the way there I saw an airplane flying overhead. Dave has pointed out and told me about these planes that are based out of Wright Patterson AFB nearby. They're enormous! C-5's or something like that. They're so big, in fact, that it looks like they're barely moving across the sky and might fall out of the sky at any moment. For some reason, watching this plane move very very slowly across the horizon made me think about the fact that life goes on for the rest of the world. We're in this weird little holding pattern waiting for Chloe to get out of the hospital and it almost seems like it's not real life - like we're living some weird dream sequence that just isn't ending... But it is real life. It's our real life and I need to own it. I LOVE Solana's school. She's going to be a St. Albert the Great "Stag" (get it?) Her teacher is awesome and I can't wait to get involved. I signed up to make play-doh for the class and Dave already wants to volunteer for the Christmas tree sale. We purchased a home in Centerville because of the great schools but Dave jokes that we might not use them because I love St. Albert so much. LOL! I guess we'll see! Two packages arrived today. Is it possible for something to be ironic and appropriate at the same time? The first package was filled with super cute Hershey's candy bars called "HERESHEIS" bars. They're like little birth announcements and have all of Chloe's birth information on them. Just adorable! The second package was Leila's urn. It's so small and has an Italian Renaissance-style angel with huge wings embracing the urn. I think it's absolutely beautiful and I love the thought of angels embracing and caring for my Leila in heaven
9: 9-3-09 Chloe Knows Her Mama and Daddy Chloe's been leaning heavily on her respirators and the nurses can't seem to get her oxygen levels down without the O2 saturation in her body getting too low. I spent some time humming to her today and decided that she really likes my singing. She must know I'm her Mama. Every time I hummed her O2 saturation would increase. It's nice to feel as though I'm actually doing something to help my little girl. The same thing happened for Dave when we went back this evening. He would talk and sing to her and she'd just eat it up. Of course, she used to react to his voice from inside my belly. It probably sounds the same from inside her isolette. The doctor really wants Chloe to start getting some nutrituion so they started her back on milk feedings today. There's a little feeding tube that goes into her mouth and all the way down into her belly - that's how they get the milk in. Unfortunately, that's also how they're getting the milk out. They're trying 1cc feedings every four hours. Before putting in a new 1cc of milk they can actual suck out any remaining fluid from the last feeding and there seems to be plenty left. She's not digesting. Prayer for the night. "Dear Lord, Please make Chloe's little body digest the nourishing milk she is fed so that she can grow bigger, stronger, and closer to coming home to her loving family. In Your name I pray. Amen"
10: 9-4-09 Day 13 - Hanging In There We've been waiting for some good news since Chloe's first bad day. It's been a long few days but I think she's finally on the rebound. We got a good report from her nurse tonight. Her blood pressure seems to be up and stabalizing. The dopamine and cortisol are doing their jobs! We believe that her low blood pressure started a chain reaction of problems and that raising it will get her on the right track again. Here's what we're praying for: - Her blood pressure continues to stabalize and she can be weaned off the dopamine and cortisol in the next day or so. - Her PDA (hole in the heart that closes for full-term babies) remains closed - Kidneys get increased blood flow as her blood pressure rises so that she continues to increase and maintain an appropriate urine output. - Stomach gets increased blood flow as her blood pressure rises so that she can digest mama's milk as soon as they begin feeds again. 9-4-09 We Are Blessed I have to take a moment to reflect on all the love and support we've received through this most difficult time in our lives. We are blessed to have an amazing family. Dave's sister, Carol, is busy with three kiddos of her own and one on the way. Yet she always keeps in touch and is constantly sending little gifts for Solana and the twins. My sister, Leticia, is my ever vigilant prayer warrior and support person. I owe many days of sanity to her relentless phone calls. And my mother has put her life on hold to spend most of the last two months in Ohio helping us survive my bedrest and now the challenge of NICU. And Dave. I thank God every day for such a wonderful husband. He has been through all of this right along side me and yet, manages to take care of Solana and me physically and emotionally. Some people credit me with being "strong" through all of this but I am such a mess. I wouldn't be much more than a soggy blob without Dave. I couldn't be a luckier girl. But I already knew I was blessed with family and, as much as they have come through for me in such amazing ways, I'm not terribly surprised. What has surprised me is the amount of love and support we've received from strangers and new friends. Who knew that Facebook would be the vehicle to send hundreds (or possibly thousands) of prayers heaven-bound for our twins and now for Chloe? Many times I stared at Facebook in amazement at all the messages from friends and friends of Leticia. Beautiful, supportive, and loving messages. And who knew that there are so many other TTTS mothers out there on the TTTS Foundation website? Their stories and experience have been invaluable to me on this journey and I honestly would feel lost and alone without them. I'm so thankful for all of those wonderful prayers and blessings. And then there are our new Ohio friends. Friends we've only known a few short months but who have treated us like family. How is it possible that we surrounded ourselves with such amazing people right before our time of need? I'll tell you what. I stopped asking myself "why" this happened to us because I don't believe that it was God's plan or hand that took our baby girl, Leila, away from us. And I don't think that God intended for Chloe to be born premature and struggle to survive in the NICU for months. I think sometimes bad things just happen to good people (there's actually a good book with this title). TTTS is a completely random biological phenomenon that can happen to anyone. We did nothing to bring this on ourselves nor were we chosen to hurt. What I DO believe, though, is that we are blessed by God to be surrounded by people whose hearts have been touched by Him. He saw our pain, heard our prayers, and filled their hearts with generosity. Thank you to all of you who have prayed for Chloe and Leila. Thank you for reaching out and touching us with your kindess. Each prayer, message, and generous act of kindness has lifted my spirit and I will ever be grateful for that.
11: Day 13 - Getting Better/IV drama I'm sitting in Chloe's room right now while the third nurse tries to get an IV into her fragile little body. They had stuck her four times before I had to leave her side to make room for a third nurse to come in and try. I'm not sure how much good I was doing by her side, anyway. I was cupping her little head and humming to her but I was getting upset and had a hard time humming. Plus, my palms were getting sweaty and I kept having to lean back so that my tears wouldn't fall into her isolette. I questioned the doctor and nurse practitioner, who happened to be coming by on rounds during these IV attempts, and they told me that they try to keep IV's in place until they go "bad." A bad IV means that it has come out of the vein and the fluid goes into the tissue around her vein instead of into it. Tiny baby veins are so delicate that IV's don't last super long. I was here for the first IV removal this week, though, and know that it had NOT gone bad. The nurse just took it out because she thought Chloe wouldn't need it again. We're on her third IV this week and I'm less than pleased. It's a difficult balance to express displeasure to the people caring for your baby, as well as, appreciation and respectfulness of all that they are doing. I think I pulled it off well, but come to think of it, I suppose I feel it. We really are lucky to enjoy the wonderful quality of care that Chloe receives. And I'm thrilled that they are finally giving us good reports again. She seems to be improving quite a bit! -The dopamine and hydrocortisone seem to be working well and they hope to start weaning her off the dopamine soon. -She's urinating quite a bit. -Blood pressure is up. -O2 levels are up and so they're able to lower the O2 on her respirators. -White blood cells are down so we think the antibiotics are working (even though we still haven't gotten a confirmation of infection). | Now we want to pray that: -they can sucessfully wean her off the dopamine (they can try feedings again once she's weaned) -her kidneys are getting adequate blood supplies to continue appropriate urine output -her stomach gets adequate blood supply in preparation to digest my yummy milk that they will give her soon -she is protected from pain and discomfort as the nurses do all they can to care for her -the antibiotics continue to work and she is protected from future infections Note: They finally got the IV in. It's in her head and looks pretty bad but they couldn't get it in anywhere else. I hope it hurt less going into her head, anyway. Let's also pray that this IV lasts a long time and they don't have to invade on her poor little arms and feet again any time soon!
12: 9-6-09 Day 15 - Cosmic Joke It's like a weird cosmic joke. I suddenly find myself surrounded by 1. Twins. I swear twins are everywhere! It seems like every time I turn around I find myself thinking, "Seriously?" How can there possibly be so many twins in my general viscinity? At least none of them have been identical girls. I'm not sure I could handle that. And 2. Pregnant women talking about how much they want to have their babies early. Now, I must admit, that in my life I have joked a time or two about how I wouldn't have minded if Solana had come a bit early so I completely understand where they're coming from and don't begrudge them these silly comments one bit. But, if you can imagine, I'm kind of sensitive to this line of talk right now and don't understand why I'm suddenly surrounded by it. When and how did early delivery become something I hear about on a daily basis? Like I said - cosmic joke. Now, to important matters. Chloe's heart valve reopened. This is not good but they can give her some medicine to try and close it. The problem is that a side affect of this medicine is that it stops her from peeing. If she stops peeing then fluids will build up in her body and they'll probably accumulate in her lungs. They noticed some fluid in her lungs today and we really don't want that to continue so they gave her another drug that's like a water pill to try and encourage urination. And get this. These drugs are going into her new IV that she got this morning because the one they put in yesterday (in her head) came out on it's own. Yes, I'm serious. BUT - - - they tell me that they got this new one (also in her head) in on the first try. Thank you Jesus! Overall, I think this was a pretty good day for Chloe. While some things aren't going exactly as we want, many things are getting better. Her blood gasses look good, she's no longer acidic, her O2 was only around 55%, she's tolerating the nurses bother her better, the new IV is in the middle of her head so they were able to lay her on her right side and she seemed to like that, etc. And she turned 2 weeks old today completing what would have been week 26 in utero! Let's keep praying. 9-7-09 Day 16 - Duct Is Closed! Praises! We had some good news today. The duct in Chloe's heart is closed! That and the fact that she doesn't have any bleeds on her brain are really good news. In addition, Dave and I both had some interaction with her. We didn't get to have an isolette change yesterday so we really appreciated today. I got to take her temperature and change her diaper. Dave also got to do those things plus he got to hold her in his hands while the nurse changed out her bedding. She's still really sensitive to stimulation so we rarely get to touch or hold her. These moments are so special to us. Our main concern now is her lungs. She was born well before her lungs finished developing and the x-rays keep showing fluid in them. They have switched her back and forth on different respirators to try and find just the right balance to give her the help she needs. She's back on the oscillator today. This type of respirator gives her small quick breaths that keep her lungs open but don't stretch them out too much. Hopefully, it will help keep her oxygenated without creating too much scar tissue in her lungs. Our next area of concern for the day is the fact that she's still not receiving any feedings. She's been on dopamine to assist with her blood pressure problems and can't receive any feedings while on dopamine. She needs to get some food in her belly to grow and really hasn't had an opportunity for food in her belly with everything else going on. Hopefully, they'll be able to wean her off the dopamine tonight and get some milk into her belly tomorrow.
13: Counterclockwise from top right: -Very very delicately changing Chloe's diaper. Her skin is so sensitive. I don't want to rub anything against it for fear of abrasion. Yes, my upper lip was sweaty... -Dave holds Chloe' in his hands as the nurse changes out her bedding. I'm pretty sure his fingers are thicker than her thighs. -My goodness she is tiny. -Solana gets a peek at her baby sister.
14: 9-8-09 Day 16 So tired. I'm not sure how it is possible to be so tired from sitting all day or how my days are so long lately. I'm not doing any housework and am just barely mothering Solana. My mom is such a blessing! I have faith we'll make it work when my mom leaves. I'm just curious to see how that will happen... Not much to report today. Chloe is still being weaned off of dopamine so no milk, yet. They've also lowered her morphine. It seems like a good thing that they're taking her off morphine but I worry that she's feeling pain or discomfort. She's such a tiny little thing and is constantly getting new IV's (she had 5 in 7 days) and gets her heel poked several times a day for blood. Plus, there's a tube down her throat and all the way to her belly and the oscillator kind of jiggles her around all the time. I hate to think how all of that feels. She seemed to be having a hard time this afternoon and Dave laid his hands over her to try and comfort her. I think if I pray hard enough for it then she'll be able to keep that feeling all night long. If God will lay his hands over her like Dave did when we're not there then I think she'll be ok. Our biggest concern is still her lungs. Her x-rays still show "white-out." The doctor corrected my understanding today. This doesn't necessarily indicate fluid in the lungs but rather, collapsed lungs. They're so tiny and delicate that they just aren't opening the way they should. Unlike adults, premies still have the ability to grow lung tissue. Yes! My prayer requests for the day: - Let Chloe's blood pressure remain stable so that she can be fully weaned off of dopamine. - Please keep her safe from pain and discomfort as she is weaned from morphine. - Pray that the antibiotics she finished today fully eliminated the infection that set her back last week. - Let her blood flow as needed throughout her body to her extremeties, kidneys, and stomach so that her body can pee and digest milk when it's asked to do so. - Please give her body the strength to heal her damaged lungs so that she can eventually breathe on her own with full use of her lungs. 9-9-09 Day 17 - Excitement Chloe seems to be doing pretty well today. Her lung x-rays show slight improvement and her blood pressure is stable after stopping dopamine. They might be able to start feedings in a day or two if her blood pressure remains stable. Plus, they lowered her morphine and she seems to be handling that ok, as well. We like boring days like this. Keep up the good work baby doll!! You can do it!! I guess we would have gone into shock with such a low-stress day, though. On the way to Solana's first day of Pre-K we were rear-ended at a stop light. Solana and I are fine but the back of our two month-old minivan is smashed to smitherines. I'm so glad for this little bit of excitement because I don't know what I would have done without it (can you see my eyes rolling as I type that?) 9-10-09 Day 18 - New Challenge Chloe's belly was bloated today and they couldn't figure out why. They discovered late this afternoon that she has some fluid on her belly. I still don't really understand what that means but it sounds like it's nothing right now and we hope it doesn't turn into anything. The nurse practitioner said they're just "going to watch it" for now. That's seems to be one of their most favorite phrases in the NICU... It makes me nervous. One thing that they did tell me is that this means she's probably not healthy enough for feedings. As important as it is to get some nutrition into her to make her strong we still can't do it. Frustrating. I think I need to go to my friend Kris's facebook page really quickly. He always has inspirational words on there. Ok - here we go: God is able to sustain us! Nehemiah 9:21 says, "For forty years [God] sustained them in the wilderness, and they lacked nothing. Their clothes did not wear out, and their feet did not swell." Praise God! 9-11-09 Day 20 - Outlook bad This is Leticia, Cynthia's sister. She asked me to post something so you all will know what's going on. Chloe has gotten another infection and her little body isn't handling it well. Cynthia's text to me said, "She's really bad off. Her outlook for survival is not good. We always seeem to beat our (good) odds & end up bad. If there's a time to beat the odds it's now." That's all I know. Cynthia and Dave are at the hospital making arrangements for Chloe to get baptized. As I find out more, I'll be sure to update you all. Please pray! Chloe, my sister, Dave, and Solana need us more now than ever!
15: 9-12-09 Day 20 - Yesterday and Today First of all, I need to thank all of you who are praying for Chloe. This is probably the scariest time of our lives and your support is such a blessing. I'd also like to ask that you pray for my friend, Jen, and her little TTTS survivor, Ava. Ava is back in the hospital where they are doing testing for her breathing/apnea problems. Before yesterday Chloe's blood pressure and infection issues had improved and we were mainly worried about her lungs. Then we were once again reminded of how quickly things can turn. On Thursday they had started noticing that her belly was distended. It wasn't bad, though, so they were just going to watch it. By yesterday at noon it had gotten bad. Her belly was huge and round and hard looking - like a little balloon with too much air in it - and it had a dark green undertone. The doctor and nurse practitioner came and spoke to me as soon as I arrived. The general message was that she had developed a complication with her intestines that meant she probably wouldn't make it. Two hours later I had to leave to pick Solana up from Pre-K. The nurse promised to call me if I needed to get back immediately. Dave arrived during my absence and, after talking to the doctor, confirmed my understanding of the situation. After picking up Solana I left her with my mom (I thank God for her about a million times a day) and they dropped me off at the hospital. We had about 4 hours to wait for the pediatric surgeon and I pretty much cried the whole time. Dave was on the phone with Uhaul, DirectTV, and friends cancelling our move scheduled for the next morning. We had difficulty finding a priest to perform an immediate baptism. The chaplain came and asked if this was "emergent" and the nurse/respiratory therapist in the room both responded "yes" for me before I could process his question. Finally, a priest from UD arrived to perform the baptism. I was so grateful he was able to make it. The surgeon arrived moments later and assessed the situation. He agreed with the doctor that there was probably a leak from her intestines into her stomach. This was poisoning her body and causing her belly to be distended, along with a myriad of other things (typical chain reaction of problems that happens whenever a premie gets sick). He decided that the best approach would be to cut an opening into her side so he could get a look at her intestines and then insert drainage tubes to get all that bad stuff out of her belly. We consented and went to the parent's lounge during the procedure. I swear I have never prayed and cried so hard in my life. Dave and I still have headaches from it. The procedure went well. The surgeon could not see any diseased intestine from the incision so we know at least part of her intestine is healthy. The drains began working immediately. Lots of fluid and gook came out right away. We spent some more time with her before going home. I wanted badly to stay but I was so exhausted I could hardly speak. Today I arrived this morning to a slew of encouraging news. Her O2 levels are great - in the 20's (almost the same air that we breathe). We haven't seen O2 levels this good since week 1. Her lung X-ray looks amazingly better than it has in several days. White blood cell count is down - antibiotics are working. Drainage stopped - a good sign that the hole in her intestine was small and is no longer leaking (maybe healing). It's difficult to know what to think/feel when they tell you one day you're going to lose your daughter and the next day tell you a bunch of encouraging news. My first reaction was to protect myself. I can't get excited about this and have them run my heart through a shredder again. But Dave made me reconsider. We need to be thankful for every day that we have with Chloe. Yesterday we thought she was lost to us and that was pure misery. If I live every day waiting to lose her I won't enjoy the time that I have with her. Today we had a good day with her. She was showing signs that she might make it. She was even a bit feisty again. At one point she was flailing her little arms around and grabbed hold of the IV line coming from her head. I called for help as I put disinfectant foam on my hands and the nurse rescued her IV from her strong little grip. Then, in hopes of calming her, I was able to rest my heands on the bottom of her feet and forearm (with the tip of my pinky finger in her firm grip). She took a pacifier and settled down right away as I hummed to her for about twenty minutes. She fell asleep! The first time I was able to comfort my little girl to sleep. I took the pacifier out of her mouth after her eyelids were so heavy that they shut and had a flashback to when I did the same thing for Solana. Yesterday I would never have imagined the opportunity to hum Chloe to sleep and I'm so grateful for that moment. She is sooo beautiful and such a sweetheart for giving me that gift. It will be a week or so before we have a good idea on the hole in her intestines. (She did have more drainage today, afterall.) We will be praying long and hard all week that the good signs continue and that the hole is small and healing. If this is not the case we very well may lose her, afterall. I will try my very best to stay positive all week. I'll also be praying.
16: 9-13-09 Day 21 - Three weeks down It's almost 3am so I'm going to make this brief. Chloe's doing well again! I'm so thankful for another good day and am officially optimistic now. I spent about 5 hours at the hospital with her today and she was fine the whole time! The signs are still pointing to a small hole and she seems to be doing well, overall. So well, in fact, that they changed out her isolette and let me hold her again! And she did really well while I held her - maintaining her O2 levels and everything! I don't think I'll post pictures for every isolette change but she had her eyes open for it today. You've just got to see her with her eyes open - a gorgeous sight! Now we just need to keep praying that it really IS just a small hole in her intestines and that it can heal itself up! | 9-14-09 Day 22 - No news No news is good news, right? Seriously, I have nothing to report. Everything is pretty much the same as it was yesterday. One more day down! Get better Chloe! I love you! People keep telling me to try and get enough sleep so I might try to do that tonight. Good night all. 9-15-09 Day 23 - Close. Close. Close. This morning the doctor said that Chloe's doing well. The discharge from her incision is "minimal" and the gas patterns in her belly are "perfect." Her oxygen levels are fine and her blood pressure is good enough to discontinue her dopamine. She feels that the hole in Chloe's intestine is closing and plans to do an ink test on Monday to confirm it's closed and begin feedings on Tuesday. Of course, she said this all straight-faced and without an ounce of emotion. She's a doctor and can't react like a giddy schoolgirl - which is the way I feel upon hearing this report! Can it really be so? I look at Chloe and she looks good. Maybe even bigger than a week ago. Yes! It is so! | We had a couple of small setbacks today. They tried to move Chloe up from the oscillator to the regular respirator. That lasted two hours and she couldn't handle it so they changed her back. Then they weaned her off of dopamine but her blood pressure and urine output both went down so they put her back on a tiny bit of dopamine. My first reaction is to be nervous but I somehow turned away from those feelings today. It's almost like a physical thing. I'm calm. Chloe's good and I have faith and trust. Her job is to grow and be with us. I just know it. I thought about Leila a lot today. I took her urn to the funeral home and they gave it back to me with her ashes. With Chloe's scare this week I realized I haven't cried for Leila in days. I felt guilty about that when I realized it. Could I be forgetting about her already? No, of course not. I'm thinking about her now and what she did for us during her short time on earth. She kept Chloe company for six short months and now she's watching over her from above. I think she brings me calmness and reminds me of how much I can love. My sweet gentle beautiful girl. I'm thinking about Solana, too, and trying to make sure she isn't forgotten in all this. She and I spent about four hours at the hospital today (with a one hour lunch/ice cream break). My first attempt at a visit with Solana since my mom left. I purchased Bendarooz at Walgreens right before we went. A very well spent $20. She played with them the whole time we were there and was the most perfect 4 year-old hospital guest ever! The nurses were amazed and charmed but who can blame them? Chloe has some big shoes to fill. As much attention as she's already getting, though, I think she'll do just fine! My girls are all amazing in their own way. They bring tears to my eyes just thinking about them. There couldn't be a luckier Mommy around.
17: 9-18-09 Day 26 - Still waiting The last three days have been pretty uneventful for Chloe. Things really haven't changed much. She's maintaining her oxygen saturation with oxygen levels in the 40's. She finished her antibiotics. They tried weaning her off dopamine unsucessfully but are trying again. We're hoping she can maintain her blood pressure without dopamine so she can start feeds on Tuesday. They're still planning on the ink test Monday to confirm that her intestines are in tact. Dave and I both noticed Chloe's belly looks big and round today. The nurse practitioner took a look and was unconcerned. Of course, I'm slightly paranoid. This was the sign we saw before she got really sick last week. Praying that she'll remain healthy and will wean successfully off her dopamine this weekend. Thank you for all your prayers, messages, cards, and general love heading our direction. I'm comforted and happy to know that you all are reading Chloe's blog and thinking of her. 9-19-09 Day 28 - New Home We moved ourselves into our new home this weekend. I know. Seems like bad timing. But this was all lined up before Chloe and Leila arrived. We were actually supposed to move last weekend. We had about ten friends lined up to help pack and move but cancelled the move when Chloe got sick. It seemed like it would be much more difficult - all our friends were busy this weekend. But my sister flew in from Houston a few days ago and has been like an angel. She packed up our whole house in two days and has been busy unpacking and organizing, as well. I can hardly believe how smoothly it all went. Between her and my mom we have been so spoiled lately! I'm so thankful for them! Even with the move we got to visit Chloe both days. Dave and I made it to the hospital just before midnight Saturday night and Leticia and I made it there today in time for the isolette change. Chloe's still doing well. She handled the isolette change so well, in fact, that I got to hold her for ten minutes. It was probably the fastest ten minutes of my life but I'll take a fast ten minutes with her doing so well any time! Chloe turned four weeks today! I can't believe we've had her that long! On more than one occasion I've worried about losing her. To think that she was born four weeks ago and is doing so well is nothing less than a miracle. Just to look at her is to understand why micro-preemies are considered miracles. I can't be more thankful for every week, day, moment that we have with her. They're still working on weaning her dopamine and morphine down further and her blood pressure seems to be maintaining. She's laying on her belly tonight and seems to really like that. They currently have her O2 settings down to 40% and that's better than it's been in days. I think they'll be doing the contrast study tomorrow. This is the test that should confirm her intestines are all healed up. I've been praying (well, actually thanking and begging) constantly every day and waiting anxiously for tomorrow's test results. Every day is important but this particular sickness is the one that most recently made us think we'd lose her. I'm ever so anxious to hear that it's healed! | Below: Solana discovers the joys of iPhone while I make notes in my planner. I made notes every day about Chloe's medical condition and progress. Right: Leticia washes up (fingers to elbows for two minutes) in preparation to touch Chloe for the first time. She's very excited. Can you tell?
20: 9-21-09 Day 29 - Play-Doh Factory Poop Never did I forsee the day that the description "Play-Doh factory poop, I wiped and it just kept coming" would elicit such excitement in me! The appearance of poop in Chloe's diaper is really something to cheer about. In four weeks, I haven't heard about any BM's and was questioning this quite a bit right before they diagnosed her intestinal tear. BM's mean her digestive system is functioning and are a great sign. I'm so excited to hear about it! We didn't get the so-called "ink test" (I'm not sure what it's exactly called) today to confirm that Chloe's intestine is healed. The doctor wanted her to be completely off of dopamine and morphine before doing the test and she was still getting a very low level dose of morphine today. They've now discontinued both and, I'm excited to report, she seems to be handling her new drug-free existence quite well! Thank you God! I hope that you have found this entry to be more literate than yesterday's. I was really tired when I composed it and it shows! :-) Thank you, as always, for your concern/prayer/love/general goodness. You all mean so much to us and are a true blessing. I read the cards, emails, and messages every day and thank God for so all the wonderful people looking out for Chloe every day. God bless you and good night. 9-22-09 Day 30 - Not so hot I'm trying to keep a bit of distance from Chloe. Dave is feeling sick and I'm paranoid of bringing something into her room. We stopped by for a visit today before taking Leticia to the airport but we didn't hang around or touch her. We also moved into our new house this weekend so my recent visits have been really short. I feel like I'm having Chloe withdrawal and hope she's not missing me. They actually did the ink test tonight by putting some kind of tinted liquid into her belly. The plan was to track it's progress through her digestive system using x-rays. The liquid never left her belly, though. This is confusing to us since she's been pooping so much lately. The doctor seems to think that this is a morphine-related side effect and wants to try again after she's been off morphine for a while. We're worried about her lack of pain medication, though, because she seems to be having trouble keeping her oxygen saturation up lately. She's not tolerating care (being handled) well at all and this could be a sign that she's experiencing pain or discomfort. She's still on the oscillator (the respirator that makes her belly vibrate), has tubes down her throat, and has drains sticking out of her side. Seems pretty darn uncomfortable to me! I hate to think she's in pain. I just pray that God can lay his hands over her like a warm blanket and comfort her while I'm not there to hum her our special song. | 9-23-09 Day 31 - Another Roadblock Did you ever watch the Flintstones? As a child, I remember watching the episode where Fred is in the hospital waiting room anxiously awaiting the arrival of Pebbles. He paces back and forth so many times that he begins to wear a path in the floor of the room. Eventually the path is so deeply worn that you only see the top of his head as he paces inside the deep hole he's worn. That's sort of how we feel now. The doctors still don't know why Chloe's digestive system isn't processing the liquid dye they put in her stomach. They put 4cc's in there and after no apparent movement pulled 2cc's back out. They're making some guesses as to why this might be happening but don't want to commit to anything or create a plan of action until after the pediatric surgeon takes a look at the x-rays. One of the nurses told me that they saw some of the dye in her lower intestines. Of course, my first reaction is to think that's great and that some of it did get processed afterall, but the doctor pointed out that isn't necessarily the case. That was the third x-ray of the night and they never saw it moving down the other parts of the digestive system so it's possible that it came out through a rupture or fistula. We still haven't heard from the surgeon. In the meantime I continue to wear a path in the floor as I hope for the best and wait for answers.
21: 9-24-09 Day 32 - I got to spend about three hours with Chloe today and she's actually looking really good. We've been noticing for days that she actually looks bigger. She's just over two pounds now and it's pretty amazing that we can actually see nine ounces on her! This morning the doctor told us that Chloe's x-ray looked better than it did last night. Her bowel is less dialated (this is good) and we're hoping this means it's healing itself. They'll check again tomorrow and if it looks better again they'll try a feeding. Yesterday was pretty nerve wracking. What a relief to hear this news. I feel like we've been given yet another chance. I'm sooo thankful!! 9-25-09 Day 33 - No More Tubes Chloe seems to be on track to bowel/intestinal improvement. The doctor showed me her x-rays today and she looks much better. He turned the suction off her "refogal" tube but left it in for today to see how she does without suction. The "refogal" tube went down her throat and all the way into her belly and was suctioning out small amounts of fluid and air. They took it out Tuesday because nothing was coming out but then her belly filled up with air and became uncomfortably distended so they put it back in. Chloe has been producing extremely large amounts of saliva the past couple of days, though, and every time I look at her she has a huge foam beard of spit bubbles. It's cute and all but doesn't bode well for the tape holding her tube in place. She managed to pull her refogal tube out twice today so they finally decided to leave it out (rather than put her through reinsertion.) As of 10pm tonight her belly looked ok. The two drainage tubes placed during her surgery have also managed to come out on their own, leaving a gaping hole in her side. The surgeon decided to leave it alone and try to let it close up/heal on its own. In the meantime they're keeping sterile gauze over it and carefully changing her diaper (the hole is pretty close to her diaper area) to try and keep out any bacteria. Prayers for tonight: -Chloe's bowel/intestines continue to improve so that they are strong enough to process feedings tomorrow. -The nurses are vigilant in their cleansing and keep germs and bacteria away from her wound site avoiding infection. -Comfort for Chloe as her body heals and grows. -The rest of Chloe's body, like her lungs, continue to develop even as we're focusing on her digestive problems. (Note: I use parentheses for medical words that I'm spelling phonetically. I have no idea how they're actually spelled and have more important things to do [like get to sleep] than research.) On other fronts: Solana's really enjoying Pre-K at our church. We are blessed to have found such a wonderful and nurturing place for her during this ridiculous amount of transition we're putting her through. I often look at her and think about how blessed I really am to have her. I'm trying to figure out how to be a grown-up and homemaker again. I haven't managed the household since June and am remembering how much work it actually is when Dave, my Mom, or my sister aren't here cleaning and getting Solana ready every day. I've decided not to overdue it, though, and have committed to taking care of Solana and the dog, visiting Chloe, laundry, clean kitchen/bathroom, and unpacking one box per day. Other household chores are on an as-needed basis. Dave seems to be getting over his cold and actually visited Chloe today after work. Then he picked up a small U-Haul and spent the rest of the evening at the old house loading up the rest of our stuff. I think all we have left is to finish cleaning and we'll finally be done with that house! 9-26-09 Day 34 - Let's Pass Some Gas Well, the removal of the "repogal" tube wasn't as much of a success as we'd hoped. Chloe's belly did fill up with gas this morning. We're not quite sure why she can't seem to pass it. The doctor guesses that it could just be immaturity or it could be that there is scar tissue obstructing the passage. They put off the attempted feeding and inserted a new tube into her belly to relieve the gas pressure. This one was inserted into her nose. Please pray with me that her body will continue to heal itself. I'm feeling alternately confident/hopeful/desperate today.
22: Day 35 - 5 weeks old - Into the 30's... Today was Chloe's 5 week birthday. Yet another week with our beautiful little blessing. We spent lots of quality time together. Me humming. Her listening. I can't be more thankful for her. Such an amazing little angel. Dave got to hold her for the first time today during her isolette change. He looked so comfortable holding her. Not a bead of sweat formed on his face - not sure how he managed that. I'm a sweaty mess every time I get to hold her! In addition to her birthday Chloe's making another milestone today. She's completing what would have been 29weeks 6days gestation. She starts week 30 tomorrow! Overall it was a good week. She's remained fairly stable and we've enjoyed relative calmness. There is the issue of her belly, though. The doctor called Dave today and said he wanted to transport Chloe to Dayton's Children's hospital right away and begin tests to determine why she can't pass gas through her bowel. This raised a bunch of red flags for us. Transporting Chloe is pretty risky in itself considering her condition. Not to mention the risks that come with surgery on such a small baby. Then there's the fact that we weren't comfortable with the process that brought them to this decision. She's stable now and we didn't understand the sudden urgency. It seemed as though they wanted to transport her simply to fit the surgeon's schedule and save him a trip to Miami Valley Hospital! Dave quickly became Chloe's vehement and vocal advocate. Fortunately, Dave has no problem standing up for his daughter (in a forceful way that I don't think I could have managed) and Chloe was not transported. Dave met with the surgeon ,who made the trip to visit Chloe and, after an assessment, decided he wanted to gather more information before moving her or performing any tests or surgery. The test and surgery, by the way, sound pretty horrible to me and I really really don't want them to happen. I'm trying so hard to be trusting and faithful. I know that everything will be all right in the end and I really want to avoid self pity. So many people and their babies have dealt with so much more than this. It's really challenging, though, to have your baby go through so much. Faith. Faith. Faith. Right? If Chloe's intestines/bowels can fix themselves tonight then she won't have to go through these tests and surgery they're talking about. How about another miracle, God? What do you say?
23: 9-28-09 Day 36 - Trying some milk Dave spoke with both the surgeon from Children's and the doctor today. The doctor still wanted to send Chloe over to Children's to do this "reverse ink test." Instead of sending the ink into her stomach and watching it digest, they would send it up her rear (using pressure) and see how it travels her lower intestines in reverse. If the test was unsucessful and they didn't find a blockage then they would probably try a milk feeding to see what happened. We felt like the milk feeding would be less invasive and without risk so we would rather try that first. The doctor said he'd be comfortable with that course of action and put in the order Chloe got 1cc of milk into her belly at 8pm tonight. Please pray with me that she digests the milk and is passes through her intestines unobstructed. This is so important! The fact that she's gone 5 weeks without food is starting to get the doctors nervous and we're starting to feel the pressure for her digestive system to start working. If this feeding doesn't work then they'll start to get invasive again. I'll be so relieved if that's not necessary. I'm imagining God's hand smoothing her intestinal passageway open and the food digesting out of her stomach and making it's long journey through her system. Please help this happen. I know she can do it! They'll check at 2am to see how much milk is left in her stomach. 9-29-09 Day 37 - Working on it Chloe is receiving 1cc of milk every six hours and before giving her each feeding they are checking her belly to pull out any milk remaining from the last feeding. Fortunately, there hasn't been any milk left in her stomach so far. This is good but we're not yet at a point to congratulate ourselves and celebrate. The doctor explained to me that this tiny amount of milk is not going to give Chloe calories or nutrition. Its purpose is to remind her stomach how to work and get it started again without overdoing it. They should increase frequency tomorrow to every three hours. Until feedings are increased we don't know if the milk will make it all the way through her intestines. We need to watch several more feedings and wait. Please keep praying hard! So far so good... In addition, they are trying to push her lungs and get her off the oscillator (just in case she needs to be transported). Please pray that her lungs can continue to handle the new oscillator settings. Thank you friends! 9-30-09 Day 38 - Milky Holding Pattern They changed Chloe's 1cc feedings to every 4 hours this afternoon. At 6pm they found some milk remaining in her stomach but at 10pm there was only mucus and no remaining milk. It's still too early to know if there's a blockage in her intestines. This waiting is making me crazy! On the one hand I want them to take it easy on her and not push her little body to hard but on the other hand I'm super anxious to know the outcome. Hey, did you know that you don't have to be on your knees with your hands clasped on your bed to pray? How is it that I'm 34 years old and just learned that I can pray anywhere any time? I can pray while doing dishes, while driving the car, while in the shower, you name it! Pretty cool... 10-2-09 Day 40 - Still trying waiting trying I usually lay with Solana for a few minutes each night before she falls asleep and, apparently, fell asleep in her bed last night. I woke up at 2am and my throbbing chest told me I'd missed an appointment with the pump. That was my first stop on the way back to bed. My second stop was to call to check up on Chloe and this is what I found: Feedings every three hours were too much for her system because they started pulling up milk and decided to stop feedings. Yikes! Needless to say I didn't get right back to sleep. I had a bit of worrying and praying to do... | But during rounds today the doctor decided to start feedings every six hours again and administer a glycerine enema. The hope is that, if her system is just slow, the enema will get her system "moving." It produced a big meconium movement right away and another smaller one at 6pm. We're really hoping that this helps because they also pulled up some milk during her 6pm feeding. We still don't know if there's an obstruction in her intestines. If only this milk will get digesting so that we can determine there isn't one... Please pray for Chloe. You can see that her belly looks really distended here. This is partially because of her dilated bowels but also because of her enlarged liver - enlarged because of the IV nutrition she's been on for 5 weeks. She's up to 2lbs 5oz now. And look at those beautiful eyes. This picture was taken right after a sponge bath.
24: 10-4-09 Day 42 - Milk Didn't Take Well, they gave Chloe a chance to show us that she doesn't have an obstruction or narrowing. She gave a valiant effort but just couldn't do it. They took her off milk again on Friday night and started her on some steroids Saturday. The hope is that the steroids improve her lungs enough to take her off the oscillator. Once she's off the oscillator and stable enough for transport she will be moved to Dayton Children's Hospital. We think that may happen Monday evening. There they will use pressure to move some fluid through her intestines backward (ie. from the rear) in an attempt to locate an obstruction or narrowing. Hopefully, it's something as simple as a bit of meconium blockage that is removed/corrected with the procedure. If it's a blockage created by scar tissue (from her original rupture) then they'll need to do surgery to remove the section of blocked intestine. I trust you can guess which one we're hoping and praying for. As we're preparing for this move we saw our first commercial for Dayton Children's Hospital. The commercial began with the name "Layla" scripted on the screen and then shows a baby and her mother. The mother spoke emotionally about how Layla was born very early and spend 101 days in the NICU. If it weren't for the amazing care they offered and the fact that surgeons were on hand and prepared to give Layla the care she needed she wouldn't be here today. Weird, huh? It almost seemed like a sign for us to feel good about this move... 10-5-09 Day 43 - New Vent and...Pacifier! The steroids seem to have worked for Chloe. They were able to wean her off the oscillator and put her on the conventional respirator today. She's been on the conventional for about two hours now and her O2 saturation is currently at 95% with her settings only in the 30's. This is pretty darn good. If she can maintain this then she'll be able to stay on the conventional. I've heard that some babies become "steroid dependant" but the doctor will wean her off the steroids instead of stopping cold turkey. Hopefully, this will prevent that. Children's Hospital will pick her up for transport to some time after 7am tomorrow and take her straight to her barium enema - scheduled for 8am in the morning. Let's hope for the best possible outcome tomorrow. In addition, Chloe is on medication for a yeast infection under her neck. This is common with premies. They live in a warm humid environment that's just perfect for yeast to take hold. She's receiving cream treatment to the site and medication. The combination of this medicine and steroids can be rough on her stomach so the doctor is giving her 1cc "feedings" just to coat and protect her stomach. Finally, the doctor talked to me about Chloe's eyes today. She had her first scheduled eye exam this morning and they discovered some scar tissue in her eyes. They don't yet know what this will do to her vision, if anything, but want to do some tests and watch it. Whew! Seems like there's a lot going on today. Just visiting with Chloe was eventful. When I got there she was laying on her back with a pacifier in her mouth and I could see her little tongue working to move it up and down. So cute! I had just barely put my hands in the isolette when my phone rang and I answered it so I was drying my hands from a "rewash" when Chloe's O2 saturation just plumeted from 95% to 50%. The nurse and I both jumped to look in the isolette and saw that Chloe was just fit to be tied. Her face was purple and all squinched up from crying and all four limbs were flailing like I'd never seen before. The nurse tried to tuck her arms and legs back in but that did no good what-so-ever so she ran out to get the respiratory therapist. I went to put my hands on Chloe and noticed the pacifier laying by her head. I quickly put it in her mouth and - VOILA! It was like magic! I could hardly believe it. She was actually throwing a fit because she'd lost her pacifier! Now, this has ocurred to me before but never did I KNOW. At that moment I KNEWthat Chloe will be the most spoiled child this planet has ever seen. Making her happy by giving her the pacifier was probably the most gratifying thing I've ever done for her. How could I EVER tell her "no?" Solana's pacifiers went in the trash can the day she turned 2. Come back in two years to find out if I can do the same for Chloe... By the way, most of you realize this but I should have explained something about the commercial I mentioned in yesterday's post.... Chloe's twin sister's name: Leila.
25: 10-6-09 Day 44 - No blockage or surgery I usually post at night but this is just too good to wait. I want to let all of you praying geniuses out there that this morning went really well! They transported Chloe to Dayton Children's Hospital. The radiologist did the barium enema and watched it move through her intestines. She did NOT - I repeat - did NOT find scar tissue or a stricture in her intestines causing a blockage. What she found was some compacted poop. She was so certain that Chloe does NOT need surgery, in fact, that she was about to send her back to Miami Valley Hospital! Dave had the head doctor over there get in touch with Chloe's doctor at Miami Valley, though, and they decided to keep her at Children's for the time being. They said that Chloe needs to poop and she's done that. They'll do another x-ray to see how things look and then the plan is to try feeding her again. I'll try to post again tonight! | Update - Kangaroo Time! The update from this morning is: although I wasn't completely accurate this morning in my statement about "no surgery" things are still looking good. The "study" they did on Chloe this morning involved a barium enema being forced up her rear and monitored using x-rays. The radiologist did not see a blockage caused by a narrowing of the intestines or by scar tissue from her earlier rupture. What she saw was some compacted poop that appeared to be blocking her intestines. Upon speaking with the neonatologist early this afternoon I learned that we need to wait for Chloe to "move" her bowels and poop out all the barium from this morning's study so that they could proceed with the next study - another barium study but this time it will be placed in her stomach and watched on it's way down the intestines. It is possible that there may be a stricture in her small intestines that they couldn't see this morning but that they might see with the second study. Chloe needed to poop before they could do that and, fortunately, she had a big diaper full of poop when I changed her! They did another x-ray after the poop and this time the surgeon took a look. And what he saw was probably the most encouraging thing today. He saw that the original barium enema went all the way up to her stomach! That's a great sign that could mean there is no blockage at all! Please keep praying that this is the case. They will move forward with the next barium study tomorrow and we want it to move from her stomach and all the way down her small and large intestines! Once they verify the absence of blockage they can begin feedings. We really need Chloe to start eating so her poor liver can start healing and so she can start growing. Once she gets stronger and grows perhaps her lungs will get better. They're doing amazingly well right now because she's on steroids but they'll take her off of steroids pretty soon. | Right: Administering the Barium enema. She is so tiny! | Above: Chloe's transport from Miami Valley Hospital to Dayton Children's.
26: Walking quickly from radiology to the NICU - Chloe's new home. The hospitals all have a new policy for the flu season. Only parents/grandparents are allowed to visit. No children. While this makes it more difficult for us to visit Chloe we're glad for the extra precautions against germs. Unfortunately, I couldn't be there this morning but my friend, Angela, watched Solana for several hours this afternoon, though, so I could stop by for a visit. Thank you Angela! | This visit turned out to be ridiculously exciting for me! The nurse let me have kangaroo time with Chloe for the first time! I almost cried when she offered. I ended up spending over an hour with my precious little miracle on my chest and she's already such a good little girl. She did just great for her Mommy! I can't even begin to describe how special that was. Instead, I'll share a picture. | AMAZING!!! | WONDERFUL!! | MIRACLE!! | SPECIAL MOMENT
27: 10-7-09 Day 45 - PDA I don't even know what to write. I feel like I've been emotionally beat up like an old punching bag. They said the NICU would be a hard ride, a roller coaster, a long and difficult road. They really weren't exaggerating. Yesterday felt so good. Today feels just as bad. Out of the blue...Chloe's PDA is "huge." She needs surgery on her heart. It will be tomorrow or the day after. Want to explain it...can't now. 10-8-09 Day 46 - Surgery Update The surgery went really well this morning. From the time they made the incision to the time the surgeon came out to see us was only 25 minutes! I'm pretty sure I wasn't holding my breath when he spoke to us but as soon as he walked away I exhaled a huge sigh of relief (figuratively AND literally)! There were no complications, no blood loss, etc. and he put two clamps in her to close the PDA. She's been pretty sleepy all day. They're giving her some narcotic pain medicine to keep her comfortable. Her respiration seems good. Now we need to wait for her to recover and finish moving the contrast out of her body so they can do the next contrast study and get those feedings started. Thank you all for your prayers and messages. Your love and support really does help me get through the day and means a lot! And I know Chloe can feel all your love flowing straight into her isolette each and every time you think of her! Love to you all,,Cyndi P.S. Dave and I are really missing our private room at Miami Valley. Maybe it wouldn't be so bad if the couple right next to us wasn't caughing all the time! The nurse said it had been addressed and they've been screened. It's only "smoker's cough" but geez people! (Sorry - I just had to vent...) 10-9-09 Day 47 - Recovering from Surgery Chloe had a pretty quiet day today. They didn't make any changes on her respirator. She's resting and recovering from her surgery. Her contrast is still making its way out. It seems like it should have been passed by now but nobody seems worried about it. I'm told they'll probably do the upper GI contrast study at the beginning of next week. Until then - healing time... Solana picked an interesting book for bedtime tonight. Here's a passage that really hit home. I'll try to keep this in mind when I feel particularly whiny: When you think things are bad, when you feel sour and blue, when you start to get mad... you should do what I do! Just tell yourself, Duckie, you're really quite lucky! Some people are much more... oh, ever so much more... oh, muchly much-much more unlucky than you! From "Did I Ever Tell You How Lucky You Are?" by Dr. Seuss 10-11-09 Day 49 - Rock Star Chloe's still doing really well after surgery - thank God for these days! She's still getting some narcotics to take the edge off but they're really small doses and she doesn't seem to need it too often. She turned 7 weeks old today and tomorrow will mark 32 weeks gestation for her. She weighs 2lb 3oz. (She was up to 2lb 5oz about a week ago but seems to have lost a bit.) The contrast is still in the bottom part of her intestines. All she needs to do is pass it so they can do the upper GI contrast and then feed her! Seriously, though, our deep freezer is filling up with milk. We need some of it to start going into Chloe! Then she'll really start growing.
28: Yesterday was my kangaroo time with Chloe. I was nervous about how she would tolerate it but, of course, she did awesome. She was at 30% on her oxygen settings when I got there but then they gave her to me and her saturation rose to 100%. They finally had to lower her O2 settings to 21%! Yes, that's room air thank you very much. AND she was satting at 95% at that! Made me feel like a total rock star. Yes, she knows I'm her Mommy. Today is Dave's turn at kangaroo care. As a matter of fact, he's there as I type. Chloe had her pressure setting reduced today but I'm sure she's showing off for her Daddy the same way she did yesterday for me! Dave and I think that her PDA surgery will help Chloe turn a corner. She should have improved blood flow to her lungs and digestive system. We just know we'll start seeing improvement from all directions now. Let's pray that her intestines prove clear of obstruction so she can begin showing off her growing skills, as soon as possible!
29: 10-13-09 Day 50 - Quiet Day Yet another quiet day in Chloeland. She's getting Zantac for some possible stomach stress (they were pulling really dark liquid out of her stomach). Things seem to be clearing up there. She's handling her ventilator weanings really well. She's down to 18 breaths per minute and 18 pressure. It seems like both those settings are getting fairly close to minimum settings on the ventilator. If she keeps this up they'll finally be able to take that tube out of her throat and I KNOW she'll LOVE that! She gags on it and fights with it pretty regularly - I can't imagine having a big ol' tube down my throat for 7 weeks! Go Chloe Go! Go Chloe Go! Let's get that tube outta there! The only thing "new" going on are her eye exams. The opthamologist saw some "irregularities" in her eye but rated her a "Stage 0" for retinopothy. I think this is good since stage 1 is the mildest form of ROP (a disease of the eye common to premies) but the Resident assigned to Chloe couldn't really tell me much more. She needs to talk to the opthamologist to get more details for me. Hopefully, this will be one place where Chloe doesn't have to undergo any more procedures. She's at high risk for retinopothy so it's unlikely but we can hope, right? Dave spent around 3 or 4 hours working in the yard yesterday and, as a result, ended up with gasoline smell all over his hands from the lawnmower. I felt kind of bad because he decided he was too stinky to go visit Chloe in the evening. So, after some long and thoughtful consideration (yeah right), I decided to take his evening kangaroo time for him. :-) They're letting us hold her once a day. I couldn't let it go to waste, right? Anyway, she spent another wonderful hour and 45 minutes on my chest last night. COMPLETELY konked out! Chloe loves some kangaroo time, that's for sure! Maybe as much as I do? They finally decided to give her a glycerin suppository yesterday and had some quick results. Hopefully, she finally pooped out the last of that contrast so they can do the upper GI contrast today. Let's keep praying for a clear pathway so we can finally get some food into this baby! I don't have any new pictures of Chloe, so I thought I'd share her sister with you. She's a doll, too. Here's Solana enjoying some of her daddy's work yesterday.
30: 9-13-09 Day 51 - Another Quiet Day Not much to report today. Chloe's still doing well with her ventilator settings. They lowered her pressure yet again to 17. Three different people mentioned how her settings are pretty low - close to what they'll be when they remove her tubes. On the one hand - I CAN'T WAIT to get those tubes out of her throat! On the other hand - the thought of pending self-ventilation is actually kind of scary. I won't get ahead of myself, though. We still have the upper GI contrast to worry about. She still had some of the barium left today so they gave her yet another glycerin suppository. The last suppository had immediate results but nothing so far today. Please send Chloe some good pooping energy. I think she needs the help... 9-14-09 Day 52 - They tried, anyway Chloe will just not pass that tiny bit of contrast that's left in her rectum. Fortunately, it's a small enough amount that they decided to go ahead and do her upper GI contrast tomorrow. They'll put some barium in her belly and watch it travel through her intestines to make sure there are no strictures or narrowing of her intestines. I can't even say how anxious we are for Chloe to begin eating. It was extremely important to her doctor two weeks ago that we get her eating and we still haven't managed to get to that point. Her liver and bones are suffering from the IV nutrition she's been receiving. We've been praying day and night that they can get her eating and the days just continue passing without reaching that point. Praying so hard that the test goes well tomorrow and that subsequent feedings are processed by her tiny and underutilized digestive system! In the meantime, I read something about hind milk that I'm going to start working on. Apparently, the milk toward the end of a "pumping session" is higher in calories than the milk pumped at the beginning. Who knew? Anyway, I talked to the lactation consultant at the hospital and she said I could try to switch bottles toward the end of pumping to collect the hind milk separately. They'll give this milk to Chloe since it's higher in calories so maybe it will help her grow more quickly. Any little bit helps, right? On a respiration note: Chloe's doing really well with her respirator and steroid weanings. So well, in fact, that they decided to try and take her off of it today and let her breathe on her own. I was on the way home from the grocery store when the nurse told me and I almost started crying. I was excited, nervous, anxious, hopeful, scared... Well, they took her off and extabated her (took the tube out of her throat) but she only lasted about 30 minutes. Poor little thing just couldn't handle all the work required to breathe on her own. They tried, anyway. It's definitely encouraging, though, that they thought she was doing well enough to try. As soon as she's strong enough I'm sure they'll try again. And once she gets some of this hind milk in her she'll be much much stronger. Thank you God for our precious little blessing. She is amazing! 9-15-09 Day 53 - Upper GI Barium Dear God, Please watch over Chloe tonight and make that barium pass through her intestines unobstructed and efficiently so that her feedings can successfully begin tomorrow. Thank you, Cynthia P.S. Please tell Leila that I love and miss her very very much. 9-16-09 Day 54 - Good news Look at how freakin' cute I am!!! Good new abounds in Chloeland!!! The opthamologist examined Chloe's eyes yesterday and said they look perfectly normal. There's no scar tissue and no abnormalties! Plus, her upper GI contrast has ALREADY made it through her small intestines and is in her colon. Go Chloe! Go Chloe! Get busy! Get to it! No surgery! They're starting her on a pedialyte drip today to get her body working on something easy first. Surgeons
31: like to do this for babies who have had belly problems) and will start milk tomorrow. Thanks be to God. I have faith she's going to do much better digesting this time. I know I've said this before but I want to thank you all again for your wonderful prayers and words of encouragement. And thanks to all of your premie parents out there who posted your own blogs. It's great to read your blogs and see that your babies once struggled with some of the same problems as Chloe and are doing well now. I only wish I had more time to read! Chloe got a new neighbor. She's an identical twin named (get this)...Chloe. She's a little bigger and her twin is already home (thank goodness). Weird, though, huh? I didn't know Chloe was THAT popular! 10-17-09 Cynthia dealing with TTTS Today started out pretty well. I went for my first jog since June (before my bedrest began). I'm pathetically out of shape but that is expected after two months of laying on my butt followed by another month healing from surgery and finally, a third month of procrastinating. Bluebell, our Australian Shepherd, is thrilled to have me jogging again. Poor thing was out of work for four months and now has a mission again! After a whopping 30 minute jog (read: sarcasm) I practically crawled into the house and collapsed onto the floor to "stretch." Even so, it sure felt good to get out! Afterwards, we all got ready to head out for some morning errands. We stopped at Saxby's and I ordered my most favorite Cinnamon Tchai Tea Latte. Non-fat, of course. Then we went to Target for Halloween decorations and decided to get flu shots while we were there. (I was glad to see the flu shots because I thought everyone was already out!) We loaded up on candy and a super-cute squirrel costume for Bluebell. Solana's dressing as Little Bo Peep this year so we were really hoping for a sheep costume but no luck - the squirrel will have to do. Things were going great until... Identical twin girls. You know, you'd think I was over it by now. Not the part about missing Leila, of course. I still think about her constantly. Every time I drive our new minivan that we bought when we found out about the twins. Every time I go into the garage and see the double stroller that Dave tried to hide in the back corner. Every time I look at the two closet doors in Solana's room that were going to be so perfect for the twins when we bought this house. And every time I visit Chloe and know that Leila would look just like her. It's the part about seeing other people's twins that I'd expect to be over by now. Those other people have nothing to do with us. Why does it bother me so much to see their twins? We saw them on the way out of the store and walked behind them on the way to the car. As I tried to hide my tears in the car all I could think was, "It's just not fair. Why do so many other people get to have perfectly healthy twin pregnancies? I swear I did everything I was supposed to do. I was probably more healthy, prepared, self-conscious, by-the-book ready for a healthy pregnancy than 95% of pregnant people out there dammit!" I feel kind of guilty. Like this is just ugliness that I can't let go of (and am subsequently sharing with all of you...please don't hate me now). Shoudn't I just be happy for all the identical twin parents who didn't suffer TTTS by now? On the one hand I know I should give myself a break but on the other hand I'm not the kind of person who's normally jealous of other people's happiness. Okay, I just needed to get that off my chest. I feel kind of weird about putting that out there but maybe it'll help me... I certainly can't spend the rest of my life getting upset and then guilty every time I see twins...
32: 10-20-09 Day 57 - Milk's Going Down So sorry for the belated update! I just realized last night how much of a slacker I was this weekend when it came to posting! Then I was at the hospital until after 11:30 or so last night and had just enough energy to pump and stumble to bed some time around 12:30. This whole no-kids-at-the-hospital thing is really putting crimp in my sleep schedule! We've figured out how to visit Chloe every day without putting Solana in daycare (I considered it but just can't bring myself to put her through another new situation or exposing her to more germs.) Dave will go straight from work and then come home to have dinner with us. I'll then go after getting Solana ready for bed. I think my new blogging time will have to be morning since I don't have time when I get home... Ok - now that I've sufficiently crafted my excuse.... ;-) Chloe. She seems to be doing well with feedings. She's fed with a tube that goes into her mouth and all the way down to her stomach. That way they can drip milk directly into her stomach. Right now they have the milk on a continuous drip. Instead of dumping an entire feeding into her stomach at one time it's slowly dripping in there throughout the day. She's up to 3cc's per hour and seems to be tolerating it. Praying that this will continue and thank God she's getting some milk nutrution! They finally completely stopped her steroids on Saturday and, not surprisingly, her lungs are feeling it. She's struggled a bit with respiration and they've had to turn up some settings on her respirator. She's up from 18 breaths per minute to 30. Her oxygen settings are up to 35ish. I think I'm getting used to this NICU thing because I'm not terribly worried about these steps backward on her ventillator. It makes sense to me that her body's working harder and bound to struggle a bit without her steroids. Plus, she's spending some new energy on digestion so we can only expect her to excel at so many things at once. (I haven't slowed my prayers, though!) We were blessed the past couple of weeks with some ridiculously good respiration days and I have faith those days will be back soon. Chloe is 8 weeks old. Adjusted 33 weeks gestation. 1120 grams (2lb 7oz) 10--09 Day 58 - Good Kangaroo - Bad Piggie Well, Chloe had another good milk day yesterday. They increased her feedings to 4cc's every hour on the continuous feed. She stooled in every diaper for the day nurse. Not much at night so I imagine I'll be hearing about a big one early today. Both of these things seem pretty darn miraculous to me! Definitely Praise-worthy! Just a couple of weeks ago we waited for days and days to get the barium enema through her system and held our breath when they had her feedings to 1cc every three hours (which was not successful, by the way)! Thank You Thank You Thank You God! And the milk seems to be doing its job, as well. Chloe's up to 2lb 7oz. That's right - a whole pound heavier than when she was born! If her lungs can grow/mature as well as her weight then her vent settings should start getting better. Can't wait to get those tubes out! Last night was a wonderful kangaroo care. Her O2 saturation improved significantly. I feel so cool when her alarm goes off at 100% saturation and they keep coming back to lower her settings... After a few minutes of wide-eyed wonderment she conked out - hard! She was like a sack of cherry tomatoes when they put her back into the isolette. I had to leave before I turned into a pumpkin at 10pm so I only got to hold her for 90 minutes but they sure were luxurious (to borrow a word from my friend Megan). Chloe does wonders for my Mommy ego, which needed a boost after Monday's kangaroo care. As soon as they gave her to me on Monday she desatted and had bradycardia (her heart rate plummeted). I know it's a normal thing for a premie to brady but it's another thing for it to happen on your chest. Her heart rate dropped to like 39 and her saturation to 4osomething. They bagged her (disconnected the ventilator and manually pumped oxygen into her breathing tube) and the respiratory therapist adjusted her tubes. Talk about scary! Fortunately, I seem to have developed the ability to stay supremely calm and still during stressful moments so they were all able to do their work around me like I was just another isolette or other inanimate object. (I think I learned this ability during my plethora of stressful pregnancy ultrasounds). Fortunately, the event only lasted a couple of minutes before she was back up to normal. (And I managed to keep my breasts covered the whole time - lol!) It definitely gave me a complex for the rest of the night, though! I wanted to put her back to recover. "Surely, she doesn't need extra work right now." I said. But they insisted that every moment with me is a good one for her so I kept her. As much of a proponent and believer in skin-to-skin as I am I was suddenly convinced that I was hurting her and making her work harder. She did...o..k...well...fine but her sats never sky rocketed the way they usually do. I think she was just having a rough night. Hopefully, I helped a bit...
33: Anyway, last night was great! And she seems to keep getting better. Here are some pictures of our lovely girl. Don't be fooled by the uber-chubby-looking one. She's not really that chunky - her face was just smushed forward or something. I like the idea, though, and I think she's going to have mega cheeks like her big sis'! Speaking of big sis, Solana gets her H1N1 vaccination at school today! We talked about it for about 10 minutes this morning and I think she's ready! She agrees that piggy flu is bad and the shot will only hurt a little bit. Plus, I promised her an ice cream cone if she does a good job... I debated whether or not I should go since she tends to up the drama setting by several notches when I'm within hearing distance but finally decided my support is more important than drama. (Plus, I've quickly learned that I'm the overbearing type of school mom. Imagine that!) Wish us luck! She's going to get cheeks like Solana! I think the bow's kind of cheesy but the nurses seemed to like it so I let it stay. For a bit...
34: 10-22-09 Day 59 - Fortifier Chloe had a really good day yesterday. She's up to 5cc's milk per hour and handling it. Based on her weight, 7cc's per hour is a full feeding so she's getting really close to that! They're talking about fortifying my milk with extra calories. Unfortunately, the fortifier is derived from cow's milk and that makes me nervous. I wanted to use hind milk to increase the calories but they're talking about increasing the milk to 120 kcal! My 22kcal hind milk can't even touch that! She's doing so well, though, that I don't want to introduce anything weird to her belly that could set her back. I asked if they could at least introduce the fortifier slowly. Any advise from you premie moms? A few other things going on with Chloe: -Lungs are looking a bit wet so they're giving her some lasix to get her to pee more and, if those improve her lungs, they'll put her on diuretics for a few days to improve them further. Still trying to move closer to get her off the ventilator. -Red blood cells are still looking low after a blood transfusion earlier this week. This is typical for preemies. They're constantly drawing blood and it's hard for them to replenish. She'll probably get a second transfusion later today. -Direct Bilirubin is high so she's on some medication for that. 10-23-09 Day 60 - DC the TPN Well, not too much to report. Chloe was increased to 6cc's per hour on day 60 and her TPN (IV nutrition) was discontinued! They're using a heparin lock flush on her pic line to keep it from clotting but might take it out in a couple of days or so. It'll be weird to have Chloe IV/Pic free! She's holding steady on her ventilator settings. They tried to decrease her breaths from 30 to 28 bpm but had to go back up because she had too much CO2 on her latest blood gas. She'll get there, though. We just need to be patient with her. Regarding her extra calories, they decided on the following plan: -Continue to feed Chloe from my first 50 pumpings (this is the milk that contains the colostrum and other important antibodies that babies need in the beginning of their lives). -Once she's up to full feeds (7cc's per hour and probably on day 61) they'll start adding the breast milk fortifier. -They'll add the fortifier only 1 calorie at a time to make sure she's not overwhelmed with a sudden change. -Once they finish the first 50 pumpings they'll start feeding her the hindmilk I've started pumping. It sure feels good to have her actually drinking my milk! I feel like we're finally harvesting the fruits of my pumping labor! 10-24-09 Day 62 - Full Feeds Well, Chloe's been doing so well with feedings that she's now getting her full feeds. In addition, her full feeds have increased form 7.5 to 8cc's per hour because she's gained weight. Chloe's now 1250 grams or 2pounds 12ounces. She's getting big! We're having kangaroo care with her every day now and she seems to enjoy it. I'll do kangaroo care every day that I can and am soooo thankful to our friends Matt and Dana for watching Solana today. I couldn't have given Chloe her daily dose of Mommy medicine without them! Mmmmwah to the best former neighbors ever! :-) Chloe's still having some electrolyte issues but they've started her on some medication for that. In addition, they've stopped the lasix and started her on two diuretic medications in hopes of helping her lungs. We're still at 30bpm and a pressure setting of 17 on her ventilator. I'm sure she'll have a huge improvement any day now! Our NICU neighbor was sorting her little boy's clothes yesterday and upon chatting with her she was shocked that I hadn't yet stocked up on premie clothes. In all honesty, I think I was too scared of losing Chloe to go clothing shopping for her. After speaking with this mom, though, I realized I'm not of that frame of mind anymore. I think now we're just focused on getting her growing and healthy. What a wonderful feeling! Praise God for this gift. Now, if you'll excuse me I have some internet shopping to do! Love to you all.
35: 10-25-09 Day - 63 2pounds 13ounces! Can you believe it? She's putting on weight like a champ! They started adding calories to her milk today. Fingers crossed that she does well with that! I'm still a bit nervous because of her bowel history but looking forward to 1800grams (almost 4 pounds). That's when she can wear clothes. The nurse told me to check out WalMart and BabiesRUs. I think I'll have to do that because I just spent an hour on the internet and bought nothing. I swear I'm the worst internet shopper ever! Ventilator settings are holding. Still not much improvement. Any day now. Any day... Chloe turned two months old on Friday. She's 9 weeks old today. Tomorrow she's 34 weeks (gestational)! 10-26-09 Day 64 - 2 calories They are now fortifying my milk with two extra calories. I think I have a better understanding of the calories. They're only increasing my milk by a few calories *per ounce.* My regular milk is 20 calories and they're currently increaseing it to 22 calories. They hope to get up to 24 or 25. She's handling the two extra calories so far. I'm not sure what they'll do when they start using my hindmilk (I think that'll actually be tomorrow). It's naturally at 22 calories, so that'll throw it up another couple. We're floating on happy clouds this week enjoying Chloe's progress. So thankful... 10-27-09 Day 65 - Problems with fortifier. Ugh Well, it looks like Chloe's having problems with the fortifier they're adding to my milk, afterall. I'm not terribly surprised but definitely disappointed. Poor baby's belly is huge and distended. She has gas trapped in her belly and throughout her intestines. She also appears to have stopped digesting the milk based on the amount they pulled off her belly this afternoon. They stopped her feeds for tonight to give her a rest. I'll be on the phone tomorrow morning to see what their plan is. Fortunately, they hadn't removed her pic line because she's back on TPN for now. Otherwise, she's about the same. Her oxygen setting is a bit lower, which is good. More tomorrow... 10-28-09 Day 66 - Half Feeds Again Chloe's intestines looked less dilated (full of gas/bloated) in her x-ray this morning so they decided to go ahead and start her on half feeds again. That was a big relief because her nurse last night said they usually keep them off feeds for 7 days when they have problems. "7 days?!?" I thought, "Are you kidding me?" (This is part of the problem we've had to deal with in the NICU. The nurses taking care of Chloe are often caring for her for the first time ever. It's amazing how many nurses there are! She's lucky enough to have a FANTASTIC primary nurse at nights but she only works 3.5 out of 7 nights. She gets random nurses the rest of the time that have never seen her before and have no idea what she's like, what her trends are, what she usually looks like, etc. And she has a Resident following her case who's only there during the day. If anything happens at night, the Resident on call puts off any possible decision-making until the next morning when her Resident shows up. This is probably best since he usually hasn't the faintest clue about her case. And, franky, I also find it slightly disconcerting to have a 27 year-old Resident as the primary decision-maker for my daughter's medical care...I'm *sure* she turns to the neonatologist for anything big. Right? Yesterday, when Chloe's belly became distended her nurse didn't even know that Chloe had received any fortifier because they had just started her on my hind milk without fortifier before she came on duty. So she thought Chloe was probably just swallowing air and that made her belly distended. When Dave mentioned she was probably reacting to the fortifier the nurse responded, "Oh, no, she hasn't received any fortifier yet." Seriously, shouldn't that kind of information be passed on during shift change? I would imagine a statement something like, "Chloe started receiving breast milk fortifier two days ago so watch her stools to make sure she's tolerating it" should have been a part of the changeover. It's amazing to me how little her caregivers know about her while they're caring for her! It's like they don't even talk to eachother sometimes... Dave's considered going back to Miami Valley. She had neonatologists and nurse practitioners that (usually) seemed to know her and we were in constant communication with them. We seem a bit lonely here. I've been tempted a few times but I'm nervous about
36: making the move and then having buyers remorse. I seem to recall being less than thrilled with a few people and/or goings on over there.) ANYWAY, ignore me. I just needed to vent a bit. I'm sure this sounds totally familiar to other NICU parents but maybe horrible to a NICU "novice" so don't freak out if you've never experienced the joy of NICU... | As it turns out, they decided to start Chloe on half feeds today. She's receiving half her nutrition from milk and half from TPN (IV nutrition). She's been tolerating it well and they measured her belly at 1.5cm smaller this afternoon than it was this morning. Dave just got home and said it was smaller again tonight! This is great news! Here she is during her noon care. Poor baby. | The plan is to increase her feeds as she tolerates them and then leave her on milk alone for a couple of days once she's on full feeds. I was very happy to hear that. Prior to this conversation I had decided to insist on milk only for at least three days before even considering fortifier again. So very reassuring they were already on that wavelength! I would tell them to forget the fortifier but they say she needs extra calcium and minerals for her bones because, due to the extended TPN nutrition, she's behind the curve on bone growth. We'll see how it goes. I think I'm going to be extremely active in he decision-making process on fortifier from now on. We'll be moving forward much more slowly than I think they anticipate. Fortunately, she's at least getting some extra calories from my hind milk. Which is, by the way, an extremely huge pain in the butt to gather! But soooo worth it if it helps my sweetness grow! In other news, the opthamologist paid a visit yesterday. With all the belly troubles I had forgotten to ask for the results but also thought we were in the clear. Apparently, they saw something and think she might be on her way to needing laser surgery. I didn't think she would develop eye troubles now but it seems she can. The report was via a nurse, of course, and they can't ever seem to make out the opthamologist's notes, so we'll need to wait until he returns tomorrow to get more info. Fingers crossed that it goes well tomorrow! This picture (right) was taken on 10-25-09, my dad's 63rd birthday AND Chloe's 63rd day of life. Isn't that a cool coincidence!? | This was kangaroo care from the 20th. She's already much bigger! I just brought the picture home from the hospital today, though, and love her eyes so I just had to share. Is she not crazy adorable? I have two blankets that I use during kangaroo time. This one is a prayer blanket sent to me by a group of ladies from the Prince of Peace in Houston, Texas. It is to remind us that we're "covered in prayer." Such a lovely thought. I think of all the people from around the country praying for Chloe every time we use it and marvel at the love we've received throughout this journey. The other is a cute duckey blanket that my friend Jen's TTTS survivor used to use. That one reminds me of the close friendship blessings we've received over the past few months. I swear, after all the love we've received I will never be the same person again. To be on the receiving end of so many blessings is life changing.
37: 10-30-09 Day 67 - Stable at 6cc's Chloe had a pretty uneventful day 67. They increased her feeds to 6cc's per hour instead of the 8cc's planned (because her belly had increased in girth a bit) but her belly remains soft and she has good bowel sounds. These are both good things. Respiratory-wise she remains stable and at the same place she's been for several days. We're still waiting for her to grow, mature those lungs, and get stronger so that they can start weaning her. She's still not ready, though. Dave and I were present during the opthamologist's visit and he explained to us that Chloe's not actually showing signs of ROP. It's just that the blood vessels on her retina are still growing and he needs to watch her eyes until they finish growing. Here's how he explained ROP to me: Imagine the retina as a disc shape in the back of the eye. Blood vessels need to grow out from the center of the disc to the edges. The blood vessels need to remain in/on the disc. If they get "confused" and start growing out from/up off of the disc and toward the front of the eye that is ROP. Chloe's vessels are still growing correctly. It's just that they haven't finished growing, yet, so he needs to keep watching them. Why the nurse told Dave that she was headed in the direction of laser surgery, I don't know. It could happen but it's not the case as of now. Here's another lovely shot of Chloe's beautiful eyes to brighten up your day: As I mentioned, Dave and I got to go to the hospital at the same time yesterday. You may have wondered how we managed that one... My friend, Angela (who lives up to her name), picked up Solana and took her to their house for a little halloween party for her girls and Solana. Dave and I joined later for some yummy chili and cornbread. (Do you ever want a recipe for something because it's so good but don't because you know you'll pig out on it if you can make it? A pan of that cornbread would NOT help me toward that "last 12 pounds" goal!) Here's a picture of our Little Bo Peep on her way out the door:
38: 10-31-09 Day 68 - Full feeds...again! I don't have too much time to write. It's 7:30am and I need to get going to catch part of Chloe's 8am care. I get to help with diapers, thermometers, etc. these days if I'm around. Plus, I finally get to see her primary day nurse in action. I didn't request this woman. She just signed up for Chloe, which makes me nervous. I guess I'm going to "observe" her (for all you teacher-types). She's up to full feeds. They tested my hindmilk again yesterday. Get this. 24.8 calories! Just call me Bessie. I only put out the premium stuff! They assume milk to be 20 calories and wanted to add fortifier to get her up to 24 or 25. Hmmmm. The only other change is they reduced her breaths per min. to 28 to "test" her. All her blood gases have remained steady. CO2 is JUST under the max acceptable levels so they want to see if she can maintain. Prayers for her! Love ya! Gotta run! Trying not to freak out People have recently asked me, "Do you have any other children?" I always answer, "Yes, we have identical twins. One is in heaven and the other is in the hospital." I usually end up answering some questions and giving a brief explanation of TTTS and update on Chloe's status. Solana has heard this many times and now gives her own version of the story when asked if she has brothers and sisters. Hers goes something like, "Yes, I have twin sisters. But one had to get wings and go to heaven. And my other sister is at the doctor..." It's very sweet and I'm so proud of her for being such a big girl. She took the loss of Leila very hard at first. She was so excited to have twin sisters. I was completely unprepared for her sobbing outburst when we told her. All I could do was hold her and let her cry. She now accepts that her sister is with God and knows that we'll see her in heaven some day. Solana made friends with two ladies at Lowe's today. We were waiting for Dave to finish talking to the appliance guy and they were waiting to be helped. She told them about the twins. The ladies turned to me for clarification and I told them about Chloe. One of the ladies asked if she's off the respirator and I answered, "No. Not yet but she's working on it." At this moment, the salesman arrived to help them. As they're getting up to walk away one of the women told me, "We also had twins. They were born at 25 weeks. One passed and the other came home with a trach. She died when she was two. I know it's hard. Good luck to your baby." And she walked...away. My stomach was in my throat. I'm not sure how long I stood there staring after them. All I could think was - Chloe seems like she's been on the respirator forever! Much longer than other premies I've read or know about. Why was this woman here today to tell me that? Why did Chloe's nurse make an off-handed comment about how trach'd babies can drink from bottles today? I NEED to find another premie who's been on a respirator longer than her. I've been putting off the idea of tracheotemy because...well, I don't know of any and...it's just not going to happen. But what if... I told Dave a few minutes later, "This lady at Lowe's told me something really horrible and I'm freaked out about it." I knew he'd read my mood but I couldn't tell him in front of Solana. She's too smart. I finally told him tonight and he said that lady shouldn't have told me that. We have no idea what their situation was and, although we have no idea what's in store for Chloe, we can't fret about that. I agree but. Still. I want to start searching blogs but I'm afraid I won't find any reassurance. I want to talk to the neonatologist and ask him. But I don't know what he'll say. I don't even know what I'd ask. "What are the chances that Chloe's lungs just won't heal?" "How bad off is she?" I need to stop. I need to stop. I can't. I can't. Yes, we'll handle whatever. But I don't want to. God help me. I'm so so sorry for dumping this on you. Chloe will be fine. She will. Really. Pump Pump Pumping We have a really nice lady who comes to our house for two hours every Friday morning to clean the bathrooms and carpets/floors. Solana loves to chat with her (even though I try to stop her - I mean, I only get her for two hours for pete's sake)! Anyway, I was pumping yesterday during her visit and Solana kept coming in to talk to me and leaving the door open so I kept reminding her to shut the door. Finally, she asked, "Why do you want the door shut?" In my annoyance at having to remind her so many times I blurted out, "Because I'm pumping and I don't want Miss Karen to see my boobies!" Of course, I walked into the kitchen 5 minutes later and heard Solana saying, "My Mommy's Pump-Pump-Pumping and she doesn't want you to see her boobies!" I couldn't help but crack up, along with Karen....
39: Day 69 - Come on Man! I was at the hospital for rounds this morning and listened to the Resident running down Chloe's status to the Neonatologist. It was reassuring to hear her tell him what she wanted to do and have him approve or correct her plans. Whew. Thanks for your work 27 year-old. Glad you're not the final approver on Chloe's care. The neonatologist asked if Chloe is receiving milk with fortification and the Resident informed him that she's just on milk because of previous problems with the fortifier. I chimed in, "It's Hindmilk." Chloe's nurse then pointed out that my hindmilk was tested yesterday at 24 calories to which I quickly corrected - 24POINT EIGHT calories. At which, I expected to see his mouth drop open and hear him exclaim, "WOW! THAT'S GREAT!" To my annoyance, that didn't happen. He simultaneously tilted his head to one side and shrugged as if to say, "Well, that's great and all BUT..." Then pointed out that it's not just the calories that Chloe needs. It's the calcium and minerals for bone growth. Come on man! Give me just a little something here. Aren't you just slightly impressed? Oh well... He agreed to leave her on milk alone for another day or so and then try to fortify again but even slower than last time. Sigh. We'll see about that. I certainly don't want to deny Chloe's bones the calcium and minerals they need but...you know. We also talked about how lactose intolerance runs in my family (Solana absolutely must have two big cups of warm milk every day and we had to buy the lactose free stuff until very recently.) Plus, my mom and sister can't even look at the stuff. I'm now on a low lactose and no raw or gas-causing vegetables for the time being. We want to make sure that, if Chloe responds negatively again, it's not due to any bad stuff in my milk. Oh, and Chloe's daytime primary passed her observations with all "Meets" or "Exceeds" expectations. :-) She's also had 33+ years as a NICU nurse and is great so far. I think we'll work well together. If only she'd stop calling me Mrs. Hendrickson... ;-) 11-1-09 Done Freaking Out Just to let you know, I'm done freaking out. Feeling much better and less insane today. I guess this hasn't been my best week for maintaining a positive attitude. If nothing else, blogging makes me aware of that so I can reflect instead of brooding. We're on our way to church to pray, sing, think, kneel, sit, stand. You know, the usual Catholic stuff. God is good and He'll take care of us. I know that. I just need to remember it sometimes. Day 70 - The Foot is Down Today was a pretty good day for Chloe despite her yucky bad start. After a night of freaking out about the fact that she's been intibated for so long, and all the damage that's doing to her throat, she starts the morning out by (of course) self extibating! Exactly what I wanted to hear this morning. Fortunately, they got her tube back in easily (or so they say). Every time that thing goes in and out I get so nervous of the damage it's doing. Patience, Cynthia. The rest of her day was fine, though, thank God. Her oxygen settings are going down ever so slowly. They're hovering around 30-35 right now. She still desat's and needs suctioning every once in a while but it makes sense that the O2 levels in her body drop when she has phlem blocking her breathing tube. (Just imagine breathing through a straw and then getting a wad of phlem stuck in it. How much would that suck?) I spoke with the nurse practitioner today who also reassured me that she recently had babies come off respirators after 89 and 112 days and both did just fine. We just need Chloe to grow and repair some of tat damaged lung tissue. Speaking of grow - the weekend doctor decided to give Chloe 1 calorie of fortifier today. She just got back up to full feeds on Friday. We put a quick stop to that and I had a long conversation with the nurse practitioner today. She stressed again the importance of calcium and minerals that my milk just can't provide and doesn't think that we're at the point to give up on the human milk fortifier just yet. I can accept that but also want to go a little easier on Chloe. I said I wanted 3 days beetween any changes and she agreed to that. Chloe will get 1 cal. fortifier tomorrow and, as long as she can tolerate that, shouldn't have another change until Thurs. Kangaroo time is going just swimmingly, too. Chloe usually has wide eyes for about the first 5-10 minutes and looks all around while I talk to her and then she konks out for the next hour and a half or so. I actually held her for two hours yesterday! Such a treat! I swear, if I didn't have Dave and Solana at home to love on (and they need it, too) I could sit there all day with her. It feels just wonderful to have her tiny little body snuggled up against me. Today she was sucking on her tubes. She really seems to like to suck. I have a feeling that her pacifier will quickly become her best friend as soon as they get those tubes out of her mouth. And maybe, just maybe, she'll be the one to latch on when that time comes. Fingers crossed! I pumped 6 months full time for Solana and now two months for Chloe. If I can get Chloe to latch on I swear I'll do the happy dance and post it on the blog! Oh, and I think Chloe might be a budding musician. She perked up her O's yesterday whenever I hummed scales and arpeggios to her! Is it too early to start planning to live my vicarious life as a professional flautist through her? Just kidding!
40: 11-3-09 Day 72 - New Schedule/New Fortifier Yesterday was Chloe's fourth day on full feeds of Mommy Brand Premium Milk. I expected them to start her on fortifier, since she'd already done 3 days on full feeds, but the doctor decided to give her an extra day. Today they are adding one calorie of Elocare. This is a more elemental/partially digested form of fortifier that should be easier on Chloe's bowels. I kind of drilled the NP who gave me this news because I'd had "Calcium," "Minerals," "Rickets," "OsteoSomething" drilled into my head for the last few days (and by four different people) and finally drank the KoolAid. OK! I'm sufficiently scared enough to approve Human Milk Fortifier. Then they say, "Oh. Nevermind. We'll just do Elocare even though we told you it doesn't have enough calcium and minerals for Chloe." Deep Breath....Please....Explain. So, she explained to me that, for a baby with an intestinal rupture history, and problems with fortifier, they want to try something easier on her first and then they'll proabably try the HM fortifier later on. For now we just want her to grow. Hmmm. Sounds awfully familiar. Did you guys just all agree to gang up on me until I approve the fortifier just to see if you could do it? And then decide not to use it just to screw with me? Or did it just occur to you that Chloe had an intestinal rupture because, after my squeaky wheel impression, you took a closer look at Chloe's chart? Either way, I'm happy now. She's getting an easier fortifier and will hopefully start packing on the pounds and packing on that new lung tissue! Her blood gases have been acceptable enough that they've also tweaked her breaths per minute two days in a row. They're tweaking very very slowly (whisper voice) "in hopes that she doesn't notice." Hehe. These are her first changes in the right direction since they stopped the steroids. Let's hope we can keep sneaking vent changes with success... In other Hendrickson news: Dave and I have constructed a plan so that I'm not constantly running around like a maniac and simultaneously getting nothing done. Keep in mind that this is a first draft and I'm pretty sure the blanks will be filled in with lots of cool fun stuff. For example, Solana and I will be baking pumpkin pies from our little sugar pumpkins this afternoon. Anyway, we're such nerds. Check out my chart and please feel free to comment on how dorky we are. | By the way, if you click on it (just like pictures) you can actually see the detail. I just told my dad that and he cracked up when he saw the big version ;-) Tomorrow I promise a picture of Chloe dressed up for halloween! The nurses did it and I keep forgetting to bring the picture home. Finally, thanks for all your support during my rough week. And thank you for continuing to pray for my baby girl. 11-4-09 Halloween Costumes The nurses had a little bit of halloween fun at Chloe's expense. I know I know. I'm a total halloween grinch. But just because I'm a party pooper doesn't mean I'm going to ruin everyone else's fun. Here's my little baby doll all dressed up for trick or treating. Click on the pictures to get a better look. | Fairy Princess Chloe. She looks slightly put out in this picture. Maybe she's not into all this princess fairy stuff quite yet ... ;-)
41: Gardener Chloe I personally think she prefers this costume. Her expression is much more serene. She's probably imagining future gardening alongside her Mommy. 11-5-09 Day 74 -Slow and Steady Wins the Race OK, well maybe she won't be winning any races any time soon. But I'm hoping that slow and steady will get her out the door of the NICU! Chloe's respirator support is still being reduced a tiny bit each day. She had a little bit of a rough night last night. She seemed a bit aggitated while I held her and her nurse said it continued through the night. They gave her some Tylenol but she still had a couple of desat's/Brady's (when her oxygen saturation and heart rate both drop to unacceptable levels) so they increased her breaths per minute by two and, after a good blood gas this morning, decreased it back to 22. | The nurse also mentioned that her body might just need some time to get used to the decreased breathing support. Premies often 'forget' to breathe, especially if they're sleeping or super comfortable. Chloe's body has gotten accustomed to the vent doing the work for it. Her body now needs to start sensing for itself that her CO2 levels are high and that she needs to breathe and this might take a bit of time for her. She's not gaining huge amounts of weight but is going up a tiny bit. She was at 1300 grams last Tuesday (right before they stopped her feeds) and then it went back down to 1240. She's now back up to 1300. That's slower weight gain than we'd like but I'm hoping we'll start seeing some real weight gain here soon. I've read some other blogs where babies coast for a while at the same weight then have a sudden big weight gain. They also increased her Elocare fortifier to 2 calories. Between that and my hindmilk she should be getting some pretty plumped up milk. Let's pray that it helps! 11-7-09 Day 76 - Still Moving Slowly We're still decreasing ventillator support - slowly but surely. The machine is now giving her only 18 breaths per minute. She has to do the rest. Her weight is 2lb 14oz. She's getting 2 extra calories per ounce from Elocare. Not much else is changed - except me into my pajamas. I'm pooped and going to bed! Goodnight all! | Lifting Chloe during her care. Her isolette has a scale inside so that we can get her weight without removing her from her bed.
42: 11-8-09 Back Story It recently occurred to me that some of you may have no idea what happened prior to Chloe's arrival. That's usually the first question people ask when they find out we have a daughter in the NICU. So here's our story... April 27, 2005: We welcome our first daughter, Solana Marie, into this world. I take exactly 6 weeks off work and then head back to my full-time accounting job. For the next three and a half years I pretty much get to see Solana for 2-3 hours a day plus weekends. There's no way we can have another baby with this schedule but we're financially committed and I can't stop working. March 2008: We meet our new nephew and I'm head over heels in love with him. We absolutely MUST have another baby. We decide we'll find a way to make it work. June 2008: We decide we want to try for a boy. I read "How to choose the sex of your baby," go off birth control in order to start tracking my cycle, and start taking prenatal vitamins. November 2008: An opportunity to move to Ohio. I won't have to work anymore! January 2009: We move to Ohio. February 2009: We're freaked out at the thought of having a boy and decide to leave it up to God. All the cycle tracking I've been doing gets tossed out the window and we stop using backup contraception. Mid-March: I'm pregnant but don't know it yet. April 1: We leave for a resort week in Mexico. Pregnancy test is negative. Woohoo! I can drink! April 4: Hmm. I thought I should have started my period by now... Could it be the travel? Yeah, it must be the travel. April 5: Um...still not here..and..why is my chest sore? Fortunately, this is a family trip so I haven't had much to drink. But I think I won't have anymore kaluah and creams... April 8: We return home very late at night and I immediately pass out in bed. 5am I wake up and take another pregnancy test. Pregnant!! April/May: I read a book by Ina Mae, a famous midwife, and am really excited about my decision to have a natural childbirth experience. This time there will be no yucky petocin or epidural for me! I'm jogging, hiking, doing yoga, and feeling great! May 27: We go in for an ultrasound because of bleeding the previous night. Dave is chatting with Solana when the technician starts the ultrasound. Technician: And there are two in there. Me: What? Technician: You're having twins. Me: HA! (uncomfortable) Uh, you're kidding, right? Technician: No, I wouldn't joke about something like that. I look at Dave. Dave: What? Me: Babe! (for some reason, this comes out like a whiney plea) Twins! We're in total shock. After the ultrasound is over we sit around for what seems like forever before the doctor comes in. She talks about some scary disease that is only 10% likely for single placenta twin pregnancies and we disregard it since it's not going to happen to us. We have more important things to worry about like, "Oh my gosh we're having twins!" Unfortunately, I can't have them in the uber-cool birthing center for the kick-butt moms (like me) who are going to go natural. They don't allow "high risk" births in there. Pssssht. High risk my bootie! I'm healthy as a horse. I'm pretty sure I still want to go natural but won't commit just yet. We need to go home and freak out a bit more before I can make any committments. We spend the next couple of weeks alternating between excitement and fear. It took us three years to decide we were up for the challenge of another baby and now we're having twins. Dave and I looked at eachother many times and say, "We're having twins!" Then we spend another month getting ready. We're in the midst of house hunting in Ohio and change gears on neighborhoods and criteria. We definitely need a bigger house and yard now. Plus, my Outback will no longer fit the bill for our two carseat/one booster family. We trade in my cherished Outback and Dave's Legacy for a minivan. (I quickly decide I love my minivan, by the way.)
43: July 9 (18weeks) It's finally time for our next ultrasound! Exciting news! We're having girls! Bad news. We're diagnosed with Twin to Twin Transfusion Syndrome (TTTS). The girls are sharing one placenta and there are abnormal blood vessels connecting the girls through the placenta. It's only stage 1. The doctor recommends bed rest and protein drinks. We're all over it. We name the girls. Leila is our little donor and Chloe is the recipient. July 17 (19 weeks) Our next ultrasound is, unfortunately, late on a Friday afternoon. We've progressed to Stage 3. The doctor thinks we need laser surgery because the babies are in danger but there's nothing we can do until Monday. The next two and a half days are the longest of my life. I pretty much cried the entire weekend. My mom arrived from Texas on Saturday to help us take care of Solana and we leave Sunday night for Columbus. July 20 (20 weeks) We meet with the surgeon on Monday and have the laser surgery on Tuesday. During the surgery I hear lots of cursing from the surgeon of the "Shit Shit Shit" brand and am completely freaked out. As it turns out, Chloe was exceptionally active during surgery (we're not surprised as this is already typical of her) and kept getting in the way of the laser and camera. Otherwise, he says the surgery went well and he thinks he blasted away all the connections between the girls. The girls survive the night after surgery and we're thrilled because we're told this is when we're most likely to lose a baby. The following week the girls still look good and Dave finally feels them kicking! We're feeling good, like the TTTS was cured and I just need to remain on bedrest because of my damaged membranes. August 3&6 (22 weeks) Our second post-op visit does not look good. On Monday the doctor sees TAPS, which means the surgery didn't completely work. Leila shows signs of anemia. He wants us back in three days for another checkup and possible blood transfusion. On Thursday we return to Columbus and end up getting the blood transfusion for Leila. There's another family in the hospital that same day that had laser surgery and four blood transfusions. The mom carried the babies until week 32 and they're doing well. I'm feeling confident that the girls will be fine. August 11 (23 weeks) We visit my high risk OB in Dayton, since the Columbus surgeon is out of the office. He is sorry to tell us that Leila has passed. I'm in complete shock. I've been feeling kicking all weekend and am sure they're both fine! How could this be? I think I'll remember forever the moment the doctor tells me. It's weird how that moment is burned in my mind. That and the moment that we tell Solana and the heart-wrenching sound of her sobbing in my arms at the loss of her sister. Her 4 year-old cries, "But I don't WANT my sister to grow wings and fly with the angels! I want TWO baby sisters" echoes my heart. I am to remain on bedrest but not as strict since TTTS is over. I realize how easy it could be to sink into a depression after a loss but find comfort in the love of my family and responsibility in my duty to them. August 18 (24 weeks) Chloe looks good but the doctor is concerned about my damaged membranes. They give me a steroid shot for Chloe's lungs just in case. Dave repeats the shot the next day. We discuss my activity level. Walking around the house is fine. I just shouldn't do anything strenuous like rearranging furniture and "nesting" for Chloe's arrival. August 22 (24 weeks 5 days) Membranes rupture. You know the rest.
44: Lifting Chloe during her care. Her isolette has a scale inside so that we can get her weight without removing her from her bed. | Getting bigger! But still tiny :-) Snuggling with her snoodle doll. | Sucking her thumb like a champ! She was going to town on that thumb all through kangaroo care last night!
45: 11-10-09 Day 79 - ROP Surgery They realized yesterday morning that Chloe was due for another eye exam and decided to hold off on extubation until after her eye exam. It's a good thing, too, because the eye doctor decided that Chloe progressed to Stage 3 ROP and needs laser surgery. I haven't had a chance to talk to him (the eye doctors are very elusive) so I don't know too much more. We have lots of questions about how bad her ROP is, the procedure, long-term effects, etc. The surgery is scheduled for 3:30pm ET. They'll give her pain medication and a paralyzing drug so she doesn't move. They'll turn up her ventilator really high since she'll be paralyzed. She's probably pretty hungry right now. They had to stop her feeds this morning because of the anesthesia :-( After the surgery she should recover pretty quickly. They'll restart her feeds and wean her ventilator settings. Unfortunately, they'll probably have to do another round of steroids to try and get her off the ventilator. We want to limit steroids - they're not really good for her - but we also want to get her off the ventilator since her body seems to be fighting it. It's a constant balance of what's more important. Praying praying praying. 11-11-09 Day 80 - Recovering - Updated Update: Extubation today around 4:30! I'm trying to get out of here so I can be there!! The opthamologist seemed satisfied with the surgery yesterday. Sometimes the ROP isn't completely stopped by surgery so we're praying that it stops. He did say that Chloe will almost certainly need really thick glasses. We'll be more than happy to have a little girl running around with thick glasses. We just hope the ROP stops because that could have devastating effects that we won't think about right now. Chloe seems to be doing well. The nurse said that she's her old self again. She threw a fit this morning when she filled her diaper causing it to leak into her bedding. :-) Hopefully, they'll start feeds again this morning and they're still weaning down her ventilator. We should find out after rounds this morning their thoughts on extubation. Yesterday they made it sound like they'd try it again as soon as they can wean down her ventilator - maybe today! 11-12-09 Day 81 - Look at that little mouth! As of this posting Chloe has made it 20 hours without a breathing tube! They decided to do it yesterday and I wanted to be there when they did it. Fortunately, Dave had the day off for Veteran's Day (Happy belated Veteran's Day to all you veterans out there, by the way!) so I didn't have to wait until after dinner to make it to the hospital. I made it there around 4:30pm and they extubated her right around 5pm. She seemed to be doing well right away but didn't like that her feeding tube was still in her mouth and was actually getting pretty ticked off at it. I was standing at her isolette with one hand on her head just watching her and after about an hour or so | she'd had just about enough. She reached up for her feeding tube and, before I could open the other isolette door and grab her little hand, she yanked it right out. So the nurse moved her feeding tube (which goes down to her belly) from her mouth to her nose. Getting it in there was definitely NOT a fun procedure but I think Chloe will be much more comfortable in the long run. And as an added side benefit we get a full view of her beautiful little mouth. Look at how amazing she is!! You absolutely MUST click and enlarge this one! Her upper lip is heart-shaped - I LOVE THAT! Her eyes are still puffy from the ROP surgery but that will go down soon. And her cheeks are still red from the neobar tape but I imagine that's faded by now, as well. I took this picture while the nurse was preparing her new feeding tube, so she's sans feeding tube here but she looks just about the same with it since it follows her canula tube and into her left nostril.
46: Look how I've grown! The smaller prints were taken on 9/11/09 and the larger ones were taken on 10/20 Ignore my hideous hands. After all the washing, scrubbing, disinfectant foam I'm using they look like crocodile hands. I just thought this would be a good one to get a better perspective of her size. We are truly blessed! 11-13-09 Day 82 - Doing Well! No time to post today but just wanted to let you all know that Chloe's still doing well. Thank you for all your continued prayer and words of support. Love to all, Cyndi | 11-14-09 Day 83 - Three Pounder I've been waiting to say this for so long... Chloe is now over 3 pounds! Yeah! It took long enough, but she's finally there :-) 3.2 pounds to be precise. The doctors are a bit concerned with her slow weight gain over the past couple of weeks. They stopped her feeds twice during that time, though (once because of fortifier intolerance and second for eye surgery), and she dropped weight both times. I think she'll start putting on weight more now that she doing well with feeds and not fighting her tube. They did increase her feeds from 8.5 to 9cc's per hour. This is 7.3 ounces per day. Chloe's done so well the past few days that I feel greedy asking for more but let's pray that she continues to grow and improve her lung function. She also has her first follow-up eye exam on Monday or Tuesday so we must not forget about that. They said it would be two weeks before they would really know if another surgery is needed. A good report on her first exam would be nice, though, don't you think? Last night's visit was interesting. It started with me lifting the cover to Chloe's isolette and immediatly witnessing her (laying on her belly) lift head and shoulders and roll off her little belly pad. What the...? What kinds of steroids did they give this baby? Apparently, she was upset about losing her pacifier (her new best friend since the tubes are gone) and expressing herself with a little tantrum. She continued through her care. I think I was staring wide eyed and mouth agape into the isolette as the nurse completed her care and was shaken from my trance when she asked, "Do you want to change her diaper?" Usually, I'm all over that but this wild little creature kind of scared me. "I'm not sure!" (Giggling) Fortunately, I managed to Mommy-handle my little wild thing enough to get her diaper on (albeit sloppily...thank goodness there was no poop!) Hmmm. "I wonder if she'll let me hold her," I started to worry. But once again Chloe stroked my Mommy-ego. As soon as we took her flailing little body out of the isolette and placed her on my chest it was like we flipped a switch. Immediate stillness. She was a happy little kangaroo and didn't so much as twitch for two solid hours. Little stinker. I can't even say how happy she makes me. Keep up the good work baby doll!
47: ff | 11-15-09 Day 84 - Chloe Life is still good in Chloeland. Our little trooper is kicking bootie on her high flow. They started her at 5 liters (this measurement represents the speed/amount of air flowing into her nose through her canula and assisting her in keeping her airways open) and have already weaned her twice. She's now down to 3 liters and doing really well. She's also up to 4 extra calories of elecare and tolerating that well. They finally removed her pic and IV lines so all hands and feet are free of tape and wires. Between this and her tube-free mouth, transfer from her isolete for kangaroo-ing has become a breeze! (For some reason ALL the respiratory therapists are men at this NICU. Their assistance during transfer created slightly akward moments for me as I tried to keep myself covered while the nurse placed Chloe on my bare chest...) We are just loving these good days and feeling soooo appreciative for them! We're learning new things about Chloe, too! 1. She really REALLY loves her pacifier. I only hope she's not burning too many calories crying for that thing while I'm not there to pop it back in for her. 2. She really REALLY hates dirty diapers. Apparently, she was so comfortable during kangaroo-ing yesterday that she filled her diaper, which effectively ended kangaroo time. She was so upset that there was nothing I could do to console her. She was crying her oh-so-sad little cry (I can't believe I was ever excited to hear that! What was I thinking? It just tears me up to hear that tiny little cry! BUT...it is good that she's finally communicating with us...) After a few minutes of trying everything I could think of I finally decided to put her back and we checked her diaper. Yep. It was full of poop. She continued her little tantrum until her diaper was changed. Someone told me that her hatred of dirty diapers will mean easier potty training... (I wish!) So far, three different nurses have told me that Chloe did fantastic during their shift. Her only episodes were high heart rates due to crying episodes when she has a dirty diaper. If those are her only bad moments I am very pleased. Chloe is: 13 weeks old today, 37 weeks gestation tomorrow, 3lb 1oz (she lost a few ounces when they removed her pic and iv lines :-( How We Do It As I walked out of the hospital the other day I ran into another mother that I had met at Miami Valley. We chatted about why we each had moved to Children's and I learned that her 5 month-old little girl moved over because she had to be trach'd. Of course, the first thing I thought was, "My nightmare from two weeks ago. She is living it," and felt soooo bad for her. But what stood out to me was how OK she was with it! She didn't start crying or seem defeated when she told me. Suddenly, I found myself transported into the position of other people who find out that I have a daughter in the NICU. I wondered, "How does she do it? Five months? Trach'd?" This really got me thinking. People sometimes ask me, "How do you do it?" Before becoming the mother of a 1lb 7oz micropremie I could NEVER have imagined life as the mother of a micorpremie. I couldn't have even fathomed how the parents could bear to leave their babies in the hospital and go home or watch their child undergo hundreds of heel pricks, a dozen blood transfusions, multiple surgeries, weeks of intubation, etc. These things seemed nothing but a nightmare to me. I remember wondering how early my babies could be born without having to stay in the hospital because that would be my goal for keeping the twins inside. I didn't even want to leave them one single day. Since becoming the mother of a 1lb 7oz micropremie I live one day at a time and can do nothing other than love my daughter, do everything and anything I can for her, and try to maintain a normal-as-possible life for myself and my family. I don't know 'how' I do it. I just do it. I don't exactly have a choice. And it's not over. We will certainly have new challenges to deal with and Chloe has more battles to fight. I don't know 'how' we will handle those but I know for certain that we will. We will square our shoulders and continue on in this new journey that we call "Life." We're not always graceful or elegant and we don't always know the right thing to say or the right way to act. We just keep trying to do our best and trying be the best we can be. So I think maybe, while I really don't know how she does it, I know why she does it. She has no choice because she loves her daughter. And that's all she can do.
48: 11-16-09 Day 85 - ROP Continues Today's eye exam didn't go as we had hoped. The ROP doesn't seem to care that they did laser surgery. It's continuing on. They started Chloe on some new eye drops. These are steroid drops that they say could possibly help to stop the ROP. They're going to try those until Wednesday or Thursday and if they don't work she may possibly need another laser surgery or maybe a more complicated surgery. I didn't get to talk to the opthamologist but I believe that the more complicated surgery is vitrectomy. My nifty little brochure, "A Parents' Guide to Their Premature Baby's Eyes" tells me that, "If the retina detaches, removal of the vitreous (vitrectomy) and lens may be needed." I think this is a real possibility. In addition to the scariness of that - Chloe would be moved to Detroit for the surgery. As in Detroit, Michigan. Nothing against Michigan. I just really really don't want to go there right now and for this reason. 11-18-09 Day 87 - Eyes Look Better The Opthamologist examined Chloe's eyes this morning and was "encouraged" because her right eye looks "dramatically better." He still sees some blood in her left eye and will be back to check them again on Monday. He said that a future procedure is still a possibility but no trips to Michigan for now. I'll take this. We could have gotten a much worse report! I called Dave at work to let him know and heard him take a big breath and let it out in a big sigh of relief. That's exactly how I feel. We've been on pins and needles the last couple of days. Now we can put off our next worry session until Sunday or so. Chloe's still hanging in there on her high flow. They had reduced her to 2 liters flow on her nasal canula but I noticed that she was breathing extremely fast when I was holding her Sunday night. She appeared to be restful and wasn't fussing or anything. She was just consistently breathing 90-110 breaths per minute. This concerned me since she lost weight Sunday. Breathing 110 breaths per minute is HARD! I tried to breathe along with her as I held her and couldn't even keep up for one minute. I was pooped! The nurse practitioner kind of laughed when I told that. She said that babies naturally breathe three times faster than adults. There are just certain things that they can still do that we can't (like hold their breath until their O2 saturation drops below 90% - our bodies just won't let us do that) so while it's really hard for me to breathe that fast it's not quite the same experience for her. Even so, they decided to change her flow back up to 3 liters. They knew they were pushing her with the fast weaning and decided to pull back just a bit. Her numbers looked much better last night! She seems to be dropping a bit of weight. In the last two days she went from 1410 grams on Saturday to 1390 Sunday and then 1380 grams last night. This is NOT the direction we want to be heading! Fortunately, she's handling her feeds well and pooping a-plenty. We know the plumbing is working and that's a very good thing. We just need some of that milk to go towards growing! Obligatory Diaper Post So, after reading a few premie blogs I decided I'd be negligent if I didn't post the following pictures. I've actually meant to for quite a while but just haven't taken the time. After seeing the same on other blogs I finally decided to get my rear in gear and post them. Here are Chloe's cute-as-can be diapers:
49: And here's my first white hair. Compliments of Day 19 and Chloe's abdominal surgery. I found it a couple of days after the surgery and have been meaning to share this picture, as well. (I actually found a white hair in my eyebrows the day after laser ablation surgery when I was pregnant but don't think that one counts since I just plucked it. I'm going to let this one stick around...) I thought it was kind of funny that I'm actually getting white hairs from this. I always thought that was just a wives tale! | I think I'm feeling the Thanksgiving spirit today. Right now I'm so thankful we're living in such a great place. One wonderful thing about living in Ohio during this time is all the genuinely kind people we're surrounded by. Solana and I visited our new dentist's office a couple of weeks ago and loved the ladies there (I usually decide how much I like a dentist's office based on how nice the people are). They acted like we were old friends from the moment we walked in the door. Of course, the dentist asked Solana if she had siblings and...well...he got the whole story. I'm not sure how I talked so much while getting my teeth cleaned but I chatted with the hygenist quite a bit and shared Chloe with her. Yesterday we received a beautiful card and very generous grocery gift card from them! What a shock! (If you need a dentist in Centerville, by the way, I highly recommend Alex-Bell Dentistry.) Does this sort of kindness exist everywhere or were we just plopped into the perfect place for the challenges with which we were about to be faced? I wonder... Dave and I aren't used to accepting generosity from other people. We usually want to say, "Oh no, it's ok. Thank you, though." We're learning how to just say, "Thank You," because people really do just want to be kind and helpful. And, like it or not, we're the people having a hard time - for now. 11-20-09 Day 89 - Michigan Well, they checked Chloe's eyes again yesterday and her right eye continues to get better. This is great. But her left eye still has a lot of blood so they can't see what's going on in there. They're worried enough that they want to send Chloe to William Beaumont Hospital in Michigan. She'll probably leave tomorrow by ambulance and be seen on Monday. They'll do an ultrasound to try and get a better idea of what's going on in there before they decide to do a vitrectomy. The eye doctor seems to have the attitude that they'll do the surgery but there's a chance that they'll getter a better look with the ultrasound and decide they don't need to do the surgery. Please help us pray that this is what happens. We have all weekend! The doctor said her stay could be as short as a few days (if they decide she doesn't need surgery) or as long as a month (if they do the surgery). Fortunately, my parents are coming to town tonight for a week so they can help out with Solana when Dave and I travel with Chloe. Thank God for them. | 11-19-09 Day 88 - Feeling Thankful Well, Chloe gained a whopping 10grams last night (sarcasm). They increased her feeds to 10cc's per hour and she's still getting 4 extra calories from elecare. And I'm still sending over hindmilk for her. It seems like she should be packing on the ounces...but I won't dwell on her lack of weight gain too much. They do say she should be gaining 1/2 to 1 ounce per day and that is definitely not happening. They hesitate to push her too hard, though, because of her history of intestinal problems and I agree with that. I just need to keep having faith (which I do - for the moment) that she'll start gaining weight soon enough. In the meantime I'm thankful for every day that I visit Chloe and see her bright-eyed, breathing on her own, pooping in her diaper, sucking her pacifier, etc. The lack of "bad stuff" is such a good thing to have. Every time I go in for kangaroo care I can't help but kissing the top of her fuzzy little head. She's SUCH a sweetheart! I love her I love her I love her!
50: 11-21-09 Day 90 - Visit from Grammy and Grampy Chloe's departure to Michigan will be tomorrow at 6:30am. I get to ride the in the ambulance and Dave will follow behind. It's about a 3 1/2 hour drive. Unfortunately, there's not a Ronald McDonald house but we were able to secure an apartment right next to the hospital through the 7th. Hoping we won't need it that long! It's within walking distance from the hospital so that will be really convenient. I'll stay there as long as Chloe's there and Dave and Solana will visit on the weekends. My parents arrived late last night. We put aside worrying for the day and spent some great Grammy and Grampy time before leaving for Michigan. We had breakfast at Cracker Barrel this morning (yum!) and then headed over to the hospital. We had a fantastic visit! I figured my parents would feel uncomfortable doing kangaroo care but wanted them to hold Chloe. Fortunately, our nurse offered to dress Chloe in an outfit, bundle her up, and take her out for family time! I wished I had brought some of the cute clothes my sister and Mom had bought her but she was so bundled up that you can't see them in the pictures, anyway. Plus, they lifted the restriction on children so Solana got to visit Chloe, too!!! She was beside herself with excitement but some how managed to reign it in and be quiet and still (except for her trembling with excitement :-) My parents are getting their first peek at Chloe. My dad has never seen her before! My mom hasn't seen her in a couple of months!
51: We were there a few minutes when we learned the restriction on children had been lifted. Dave and Solana were in the waiting area outside and got to come in. Solana was so excited! She's just approaching the isolette above. In the picture below she and my mom are waiting for the nurse to take Chloe out of the isolette. I caught my mom blinking but check out the look on Solana's face! She's soooo excited!
53: First kiss from big sister, Solana. This picture makes me want to cry!
54: 11-23-09 Day 92 - Happy 3 Month Birthday, Chloe! Sorry for the belated post. As you all probably assumed, this has been a crazy couple of days. Dave and I got to Dayton Children's just after 6am Sunday morning and waited around while Chloe and all of her assorted paraphernalia was arranged and loaded into the ambulance. I was less than thrilled with the start to the morning when Chloe's NG (feeding) tube was accidentally yanked out of her nose. Not cool. ANYWAY, the tube was reinserted and we were soon on our way. Chloe rode in style in her mobile isolette. She was upset for about the first hour of transport until the nurse turned her on her belly. Then she finally fell asleep. We arrived at William Beaumont Medical Center and went straight to the NICU to get Chloe all set up. Our first impressions of the hospital were: -It's a HUGE campus! and -Fancy :-) This place is really really nice. After traveling 3 1/2 hours to a new hospital it sure is nice to end up at a beautiful one. Then we see Chloe's space and are quickly reminded that all hospitals are very different. Chloe's not in her giraffe isolette. She's in an open bed. WEIRD to see her so exposed! Plus, they don't use high flow cannulas here. They have her on another machine called "CPAP." I don't particularly care for it because it's a much larger apparatus and really restricts her movement. But it's supposed to be a gentle form of breathing assistance that blows humidified air in through her nose and just helps her keep her little lung pockets open. Chloe had a hard time staying still and the longer/wider prongs kept getting shoved too far up her nose with her movement. :-( Around 4pm, an eye doctor came to do an ultrasound on Chloe's left eye (the bad/bloody one) and told us that the retina was flat and attached! Great news! He would study the ultrasound pictures with the surgeon in preparation for Monday morning. He also prescribed some pressure-relieving eye drops for Chloe because she had some pressure in her right eye that would make it difficult (or impossible) to do the vatrectomy. Hopefully, the drops would start working before the morning. We were very relieved after the ultrasound but it was sort of a difficult evening for Chloe because of all the changes. One of the nurses helped me swaddle her and she seemed to like that - finally calming down to rest. After four hours of sleep the night before and an early morning I called it a night around 9pm and went to our little apartment to pump and get some sleep. I woke up about 5 times last night (scared of missing the alarm and Chloe's 7:30am procedure time) but luckily was able to get back to sleep each time. I got up early, pumped, and showered. While I was in the shower Dave called and was told that they would take Chloe down to surgery at 7am, instead of 7:30! Yikes! That was in 35 minutes! Fortunately, I have completely forsaken all beautification rituals over the past month and can get ready in 10 minutes flat! We arrived at the hospital just before 7am and Chloe was, once again, placed in a mobile isolette. She was taken down to surgery and we met with the surgeon and anesthesiologist. They both seemed really nice and explained everything. They didn't even seem annoyed at my million questions :-) The surgeon would first do an examination of Chloe's eyes and then report to us before beginning any procedures. Just as Dave and I were settling into the family waiting room the surgeon came out. He reported the following: Right Eye (the good one): The "bad" blood vessels in the front and back of the eye had dissipated thanks to the original surgery. The retina is in good shape. He said that he could see the lasering from her surgery and that it was a job well done. Left Eye (the bad one): The "bad" blood vessels in the front of the eye had dissipated thanks to the original surgery. The retina is flat and NOT detached. In addition, the pressure-relieving drops given overnight helped. He would NOT do a vatrectomy to clear out the blood because he thinks that, with a little more time, the blood will all clear out on its own. He will watch her eyes bedside this week and do another big examination next Monday. But based on everything else he saw, he expects to see that the back of the left eye will look good, too! Bottom line: NO SURGERY TODAY AND (HE EXPECTS) NO SURGERY NEXT WEEK!!!! This is way better news than we expected! I feel like I just had a year's worth of blessings in one day. :-) We definitely have a lot to be thankful for this year! And what a great 3 month birthday present for Chloe! Today she is: 3 months old 38 weeks gestation approx. 3 pounds 5 ounces
55: Her new diggs. The bed is heated because she still needs help maintaining her temperature. | Getting ready to head down to surgery. | We raced to the hospital because they wanted to get her down to surgery earlier than originally planned and then we ended up standing around waiting for the surgeons to call us down. This photograph is my attempt at creativity while we waited. Don't laugh. I'm actually proud of myself! :-) | Chloe burrito. I love burritos.
56: Wooing Daddy and simultaneously throwing her first HookEm! Notice the absence of CPAP. Yay! I think Dave was a little nervous because he couldn't see the monitor from his seat.
57: 11-27-09 Day 96 - Thanksgiving Update So much has happened the last few days I'm not sure I know where to start! I imagine that I should be writing a post declaring all the things I'm grateful for but I'm not going to. I did a bit of that at Thanksgiving dinner and started crying so I think my heartfelt Thanksgiving speech is already out of my system. Fortunately, for everyone else, only my parents, Dave, and Solana had to endure it ;-) I think I'll just give the usual update. Tuesday through today (Friday) have been fairly uneventful. Chloe's been doing pretty well on her 1.5liter canula. She was working harder to breathe last night so they did a blood gas (this is a test that has been done on her at least a hundred times and involves a heel prick so they can get a small amount of blood to test levels of gasses [like CO2] in her blood) and a chest x-ray. They had talked about putting her back on CPAP but decided to just keep an eye on her. She's still working a bit harder today than she was before last night but not enough for them to make any changes, yet. Praying that her breathing gets easier for her... Chloe has a big belly. It always looks like a poochy puppy belly and we've been keeping a close eye on it since her little event on Monday. Dave and I keep asking for poop reports when we're not at her bedside and all the nurses know that we worry about her her digestion. I discovered that Chloe has her own personal baby-style sense of humor about this, which makes me really happy. Twice, we've gone to change her diaper and it's turned into a four diaper extravaganza! Each time we pull the dirty one away she immediately dirties up the new one! Fortunately for me, I make sure to have a new diaper under the dirty one before pulling the dirty one away. If not, I'd have had to change a lot of linens lately! And the whole time Chloe seems as pleased as can be, like she's saying, "You wanted poop Mommy. Here it is!" Chloe's eyes are still doing well. She's had two bedside examinations since Monday and they tell us that her eyes look, "not too bad." There's still a little blood but definitely less. We want the blood to go away because it can supposedly feed scar tissue and scar tissue pulls at the retina. Both retinas are still attached, though, and that's great! She's still scheduled for her exam under anesthesia in the OR. Monday is our big day. Oh, and I learned today that we're not in the clear from retinal detachment until 10 weeks after her due date - that means 12 more weeks of regular eye exams before we can really breathe a sigh of relief. Poor baby. Those eye exams are brutal. I also learned that Chloe has had one and possibly two rib fractures in her life. I don't think I knew that but the nurse practitioner pointed it/them out to me last night on her x-rays. We had a whole conversation about how thin Chloe's bones are and how that is really common for micro-premies. (It was really kind of scary to see the thin whispy white lines, that are her ribs, on the x-ray.) I honestly can't remember if I knew about her old rib fracture. Suddenly, it occurs to me that never in my life could I have anticipated a time when my child would be so sick that a rib fracture would be a minor thing that I quickly filed away and forgot about. How crazy my frame of reference has become... Soon enough this will all be a memory and Chloe will be home with us. And I'll be so consumed with her new antics that I'll have to consult my nifty thrifty journal to remember everything from her NICU days... That's about it for Chloe's update. My parents and Solana drove up here from Dayton on Wednesday and my mom got to hold Chloe again. She loved it and was terrified at the same time. Chloe kept gagging on her feeding tube and spitting up bits of milk while he held her so I'm sure that didn't help her nerves. I was pumping and my dad fell asleep in his chair, tired after driving from Dayton. My poor mom. She survived, though, and was happy that Chloe kept smiling at her. Chloe LOVES when we baby talk and sing to her. My mom's good at that. We got up early Thursday morning and attended the America's Thanks giving Day parade in Detroit. (We'll likely never be in Detroit for another Thanksgiving so we decided to check it out.) Solana wasn't sure about it at first but then got into it when they started throwing candy from the floats. It was lots of fun but COLD! After the parade we split up. My mom and I were dropped off at the hospital while Dave, my Dad, and Solana checked out of their hotel and picked up our food from Kroger. We ordered a fancy schmancy "Fully Cooked" Thanksgiving feast from Kroger. We scheduled our pickup for noon and timed it just perfectly so that Dave could pick up the food right at noon. After getting the food he swung by the hospital to pick us up. We were huuungry! But as we
58: got in the car I noticed there wasn't a food smell... Dave pointed out that the food was in the back. Hmmm. Ok. We got home and opened our big box to find our fully cooked meal to be a fully...REFRIGERATED meal! What?!? The turkey was wrapped up like they are when they're raw and had to be baked for two hours! Seriously, though, how lame is that? We all thought it would be hot from the deli. It was all pre-packaged stuff. We could have just bought all that stuff off the shelves. Oh well. We pigged out on pistachios while we waited and my mom and I ran back to the store for green bean casserole ingredients since there were no veggies in the meal. Fortunately, we were in the apartment so we actually had a kitchen and utensils, cookware, etc. In the end we had a really nice Thanksgiving dinner, all things considered. Certainly not the Thanksgiving we intended but we were together and that made it good. They all left back to Dayton a few hours later. Chloe and I are on our own in Michigan. We snuggled for a few hours last night and again today. She's going to be so spoiled after this week! In fact, I'm about to get my clothes out of the dryer and head back to the hospital for another snuggle with my girl. Wishing you a Happy Thanksgiving weekend! 11-28-09 Hospital Differences Chloe is currently at her third (and hopefully last) new hospital. I have been amazed to learn how controversial the science of neonatology is! The philosophies from one hospital to another, I believe, are basically the same but many of the practical things are quite different. It takes some getting used to. Here are just a few differences I've noted between Dayton and Beaumont: D: Snoodles are given to the parents to wear inside their shirt. Once they smell like us we can put them in the bed to comfort the babies. (Note: I have not worn perfume since before Chloe was born.) B: Plush "dolls" are not allowed inside the bed because they might have germs. D: Chloe spends a lot of time on her belly because she breathes better that way. The nurses make sure to rotate her, though, to give her a nice shaped head. B: All babies of 32week gestation go-on-their-backs! No exceptions! (Except for Chloe because she's not from around these parts...) The thought is that the babies need to sleep on their backs when they get home so let's get them used to it now (while they're being monitored.) D: I heard a lot more reference to Chloe's weight as her milestone guideline. For example, she can wear clothes and begin weaning from her isolette when she's 1800grams. B: They put her in clothes and started weaning her from her isolette immediately upon arrival because she's "old." D: Chloe is treated like a fragile micro-premie. The nurses do most of her handling and care (with exception of the ocasional diaper change/temperature getting by me). B: Chloe is already 38 weeks? She's a "big girl." Mommy (that's me) is strongly encouraged to do stuff for her like: dress her, diapers, temperature, suction her mouth, weigh her (unassisted), take her out of and put her back alone, etc. And I could see Chloe's nurse laughing at me (on the inside) when I put up her "Bone Fracture Risk" sign on her isolette. She didn't say anything, though, so I'm thankful that she humors me. D: Chloe's isolette was always covered so she slept in a dark quiet environment. B: The lights are always bright and we can't cover her isolette (for safety - they can get a visual of her more quickly).
59: D: The panic alarm on her monitor seemed to be set at more extreme levels. It would only go off if she was really bad off. If the panic alarm went off nurses would come running (literally) from all directions. B: The panic alarm goes off much more quickly (for less drastic reasons) and, consequently, the nurses don't come running. D: We're all in one big room. There are probably about 20 babies and 10 nurses buzzing around at all times. B: We're in a pod. There are only six babies and two nurses (unless one goes to lunch and then there's one). D: Chloe was on the high flow canula. B: They don't believe in the high flow because they can't tell the exact pressure she's getting from it. (This is probably the main philosophical difference I've observed.) There are some things I prefer at each hospital. For example, the forcing of Mommy (ie. me) to do more for Chloe is really empowering. I feel more like an actual Mommy and less like an observer. Of course, it may ust be the forceful (in a good way) nature of the nurses we got. Our Dayton nurses are way too nice so they may have just been unwittingly enabling me and my paranoid fearful self. And I love that I can cradle her in my arms and stare at her face for hours on end. The part about the panic alarm freaks me out, though. I know that she's just fine but it still freaks me out. Anyway, there's no particular reason for this post. These are just some interesting observations I thought I'd share... Day 97 - Doing Well at Beaumont Chloe had a pretty quiet day today. I spoke to the neonatologists during rounds last night because it seemed like she was getting hungry right before her feedings. Maybe she needs more food? They must have agreed with me because they increased her feedings just a bit. I really think it helped. She wasn't nearly as fussy today as yesterday. She really is becoming a big girl, though. She needs her food to feed her big growing body. Guess how big she is. 3 pounds 10 ounces! Haha! She seems to be having a growth spurt this week! And I think it's especially shocking because she was weaned (pretty dramatically, I think) on her canula support. Speaking of canula support...I think I mentioned that I've been a bit worried about her breathing over the past couple of days. It appears as though she's working harder. The neonatologist last night seemed comfortable with her effort. (And although he seemed slightly pompass to me, Chloe's nurse says he's her favorite. I really like her nurse so that gives him some street cred.) He also pointed out that 40% O2 setting on a 1.5 liter canula (what she's on now) is actually LESS O2 support than she was needing on her high flow! (It's a bit counterintuitive since her O2 was set at 25-30% but if you think about it - the "high flow" is giving her more air, thus, more O2). She actually looked a little more comfortable today than she did yesterday, too, so I hope she's just getting stronger. So far I've held Chloe for 4 hours a day two days in a row! It's heaven! Two hours bundled up and two hours kangaroo. She had a hard time during kanga care last night. I think she was tired. Her oxengen setting was way up. But she did great tonight! I took a dinner break around 4pm and went for a jog around the hospital. I figured 10 hours a day at Chloe's bedside isn't doing any favors to my rear end. I STILL can't fit into my regular pants! Bad, I know. Maybe I need to set a goal for myself and announce it to all my blog friends. So here I go. I will fit into my skinny jeans by the time Chloe comes home. It'll be like my pre-New Year's resolution! So back to my jog. Picture this. Michigan in November. It's cold. Me in black stretch pants, T-shirt, black ski cap, and sunglasses. I'm feeling really cool - like a real runner! It's 4pm so the sun is on its way down and I'm casting a shadow. I look over and see my jogging shadow. Is that me?!? My gait looks like an old lady speed walking! Not feeling so cool anymore! ;-) But at least I try, right? Hehe.
60: At the parade. We were pretty bundled up. It's COLD in Detroit! | Evan from SYTYCD Season 5. He was totally waving to me. | Cheryl Burke from DWTS. | Dave, My Dad, and Solana are waving to Santa at the end of the parade. We actually started heading back early so we caught him while his float was still parked and getting ready to go. | Our classy Thanksgiving table settings. Yes, that's wine in my tumbler. :-) Solana, my Dad, and I are showing off our best cheesy smiles :-)
61: She's supposed to be laying on the little pillow in the foreground (with the colorful hearts) but insists on rolling off of it. Her nurse rolled up that diaper to act like a bumper but it didn't work. Chloe makes herself comfortable. | Chloe cracked us up immediately after kangaroo care tonight. Her nurse and I worked really hard to get her back into her isolette without disturbing her. Based on the amount of drool I think we succeeded!
62: 11-29-09 Day 98 - OR tomorrow Chloe heads down to the OR tomorrow (Monday) morning at 7:30am ET. They'll stop her feedings at 1:30am this morning so she'll be really hungry and grumpy by the time they get her down there. They'll give her an IV and fluids. Hopefully, that'll help her feel a little more comfortable but I'm sure not enough - poor baby. Please pray for her. We want them to see improvement on her eyes. Maybe they'll send us home (back to Dayton Children's, that is)... 11-30-09 Day 99 - No Surgery! Today was one giant bag full of mixed emotions for me. Chloe went down for her eye exam under anesthesia this morning. Same drill as last week. They rolled her down to the OR. Surgeon came out to tell me he'd take a look and then return to tell me his findings before proceeding with any surgery. He went in. After 10-15 minutes he returned to tell me that Chloe does not need surgery today. The blood in her left is has pretty much cleared away and neither retina has detached. We can go home. Yeah! Then he starts talking about about some pigment discoloration he found and Chloe's future vision impairments. We can't know for another few years what her vision impairment will be so I will choose not to worry about that right now. There's nothing we can do about it, anyway. Chloe is still at risk for retinal detachment for another 11 weeks so she'll get weekly eye exams. Fortunately, those can take place at home. Last week the anesthesiologist also spoke to us before Chloe's eye exam. That didn't happen this week but I wasn't too concerned since she was undergoing the same procedure. They would just give her some gas to calm her. They wouldn't put her under or intubate her unless they decided to do surgery. So how surprised was I to arrive upstairs at the NICU to find Chloe intubated and breathing on a ventillator after her 15 minute eye exam? Very. In fact, I was pretty horrified and scared. I started having flashbacks to her oh-so-recent life on the ventillator and the tears started flowing. I ask the nurse the obvious, "They intubated her? I thought they were just giving her gas." The nurse saw my obvious distress and kindly explained that they gave Chloe the same stuff that Michael Jackson took. You know, the stuff that killed him? People have varied reactions to it so that's why anesthesiologists have to be on hand to monitor the situation. Chloe Brady'd and Desatted so they had to intubate her. "Oh." Poor lady. I'm pretty sure she was actually trying to comfort me. (I laugh now.) She assured me that she'd take Chloe off the vent soon. Like, as soon as she wakes up. Great! I'm thinking that's within the next hour. This is 8:30am. I then proceeded to stand and/or sit staring at Chloe for the next 5 hours (with one 30 min. break to pump) before I finally had to go get my first meal of the day. I came back, pumped again, and they finally extubated her at 3:30. Oh my gosh that felt like forever! Apparently, Chloe has a very strong reaction to anesthesia. During this time I managed to complain to a couple of people. An hour or so after she's extubated I'm pretty much over the whole thing. Chloe is in my arms breathing like a champ and finally getting some milk. My world is at peace once again. That's when the surgeon comes in because they told him I was upset. I was glad to have the opportunity to talk to him - even if it was after I'd calmed down and had Chloe in my arms. At least I was heard (even if he didn't "hear" me). He's the big cheese and actually feel lucky that a world renowned surgeon looked at Chloe's eyes. Then the charge nurse gave me $15 in gift shop coupons because she felt bad. That was totally unnecessary but I didn't turn them down :-) I chatted with the super nice lactation nurse about nippling and am getting excited about starting that. And ended the evening holding Chloe for another two hours. We're both so spoiled now! I finally said "goodbye" to Chloe's night nurse who she had for (count 'em) 6 nights straight! Yes, that's on 12 hour shifts. What a freak streak of luck we had on that one! We've NEVER had the same nurse for 6 straight days! And, on top of that, I liked her a lot. We're in a strange hospital. We don't know anyone. It was such a comfort to have the same nurse (and a good one at that) watching over her for almost a week straight. Now I'm off to bed in my little apartment. This week went well, I think. No bad taste left in my mouth from this place. But Michigan oh Michigan. I will miss thee not.
63: 12-1-09 Day 100 - Back Home I can't believe Chloe is already 100 days old! She's getting old! :-) We're all back home safe and sound. We're so happy that she's well and back to Dayton so quickly! She's tucked back into an isolette sleeping away. They aren't wasting any time moving her forward, either. They already decreased the temperature in her isolette and changed her feedings so that she gets her whole feeding over just one hour (instead of two). 12-3-09 Day 102 - Oh Crap! We're doing really well. Don't be fooled by my title. I went to visit Chloe yesterday while Solana was at school (yes, the "schedule" is already out the window - Michigan kinda screwed that up). Anyway, while I was there one of the neonatologists stopped to look at Chloe. He hadn't seen her since her return. While examining her he asked, "[Tell me again.] How old is she?" I blurted out, "29 weeks." This is the second time in a week that I've shaved 10 weeks off her gestational age and...WAS BELIEVED! She is soooo tiny! He nodded at 29 weeks and thought for a moment. I quickly corrected myself. "Oh wait! She's THIRTY-nine weeks!" His eyes bulged and he asked, "Has she taken a bottle?" I'm thinking, "Uh, are you kidding me? She only JUST got off the vent and started tolerating full feeds!" But I answer, "No." He then talks crazy talk. "Let's get her eating so she can go home. She may have to go home with some oxygen but I assume that's ok with you..." Hahahahahaha! Wait. He's serious. We're talking two weeks (no promises) if all goes well people!!! You were right! It feels like (even though I know it's not true) they suddenly realized how "old" Chloe is and decided to kick her out of the NICU! She's graduated to bolus feeds where all the food is poured into her feeding tube within a matter of a few minutes and she's tolerated that well today. They're probably feeding her with a bottle right now for all I know! I stopped by the hospital last night to practice some non-nutritive sucking. (I drained my milk factory and then let her practice on me.) She did great! Of course, she only gave a few good sucks but she seemed to know what to do and didn't mind at all. I really wanted to get her successful at breastfeeding first but the lactation consultant says they have good success with breastfeeding even though they get their babies onto the bottle first. Plus, it would delay her homecoming if we make her breastfeed first, and they really want to get her home soon! Like I'm going to argue with that! I spoke with the nurse practitioner today about Chloe's small size. She's WAY under the growth curve. Heck, she's not even 4 pounds, yet! She says that Chloe's a lot smaller than babies at her gestational age but she's "mature" so they know she can do what she needs to do to go home. Her growth curve is absolutely below the norm but at least it's a curve and not a horizontal line. Chloe just takes things at her own pace. When I got home last night from the hospital Dave was shopping online for premie diapers and air purifiers. (He's such a planner!) Then he asked me if I have a plan for having Chloe at home and keeping an eye on her. What? I can't just leave her in the room sleeping while I clean house? Crap! I am so screwed! Plus, check out Chloe's bedroom. Can you tell we weren't expecting her home any time soon? At least she won't be staying in there for a while....We actually do have a place for her to sleep...
64: 12-6-09 Day 105 - Nursing Chloe Chloe is doing soooo well, you guys! She is growing, breathing, eating, pooping... It's great! She's down to .5 liters on her nasal canula and she's doing really well on it. I don't think they'll be taking her off oxygen completely in the next day or anything but .5 liters is pretty darn good! Her bed temperature is pretty low. I forgot the temperature at which they start trying a crib but she must be pretty close. Her isolette doesn't even feel warm when I put my hands in there anymore! And here's the big one for me. She's nursing! They had told me they would start her on the bottle only but I asked yesterday and the nurse practitioner put in the order to let Chloe nurse once a day. And she's great at it! Her full feeding is 1 oz and she got over a half oz today before tiring out (we know because we weighed her before and after). But then after we weighed her she wanted to go in for more so I let her. I must say, hearing Chloe gulp while nursing made me downright giddy! She's being such a big girl! And speaking of big girl. She's up to a whopping 3lb 11oz! Chloe is 15 weeks (3 1/2 months) old today. Tomorrow is her due date. 12-7-09 TTTS Foundation The TTTS Foundation has a fundraising event called the Matthew and Steven TTTS Walk for the Babies. The walk just happens to take place today - the same day as Chloe and Leila's original due date! The TTTS Foundation and the founder, Mary Slaman-Forsythe, in particular, were a HUGE support for me during our fight against TTTS. Mary is an amazing woman who used her grief to help future TTTS mothers with information and support that cannot be found anywhere else. TTTS is a very serious disease that only affects monochorionic twin pregnancies. That is, identical twins sharing one placenta. If you know someone pregnant with twins please make sure they find out from their doctor if their twins share a placenta. Send them to the TTTS Foundation Website and contact the foundation. They are a high risk pregnancy and will want to do everything they possibly can to keep their babies safe. Please visit my fundraising page:: http://www.tttsfoundation.org/tttswalk/?chloeandleila Day 106 - Chloe and Leila's Due Date Today was the girls' due date. I've been feeling some anxiety about this date for quite a long time now. Knowing that it would be strangely difficult. I had a few moments of self pity today, for sure. But it's the end of the day and I'm so thankful that it was not so bad at all. Chloe is doing really well right now and that has made all the difference to my state of mind. This is just one more small blessing I've been granted and for that I praise God. Chloe had her second session with the speech/feeding therapist today. It went...ok. She was a bit fussy and didn't really seem to enjoy the bottle experience. I sat by and watched this woman feeding Chloe and felt some mixed emotions. Intellectually I know that Chloe needs to learn to eat from a bottle before she can go home. I can't be there for all of her feedings so she must master the bottle and I'm anxious for that to happen. Emotionally I felt a little twinge of satisfaction that Chloe didn't like the bottle the way she liked her Mommy. The feeding therapist actually doesn't want anyone else to feed Chloe with the bottle until she's satisfied that Chloe can do it and that bit of...possessiveness (?) over Chloe's feeding is the thing that I think set off my jealousy. (And jealousy is what it is if I'm being honest here.) I think it's a mother's instinct. The way Chloe looked at me when she was nursing was such a bonding moment. I really felt like her Mommy - the person who can give her that which no other person can. Of course I don't want to share that in any shape or form with some stranger. I kind of feel sorry for the feeding therapist. I'm sure I'm not the first person to feel some irrational animosity toward her. Starting tomorrow I hope Chloe does great with the bottle. The FT said she'd try the Dr. Brown's bottles. I remember reading about those on another blog and they're supposed to simulate the breast more than traditional nipples. Fingers crossed! For tonight, though, I win! Ha!
65: 12-8-09 Day 107 Big Girl Bed Chloe is in a big girl bed! Solana and I stopped by for a visit today and enjoyed her new bed so much! Solana couldn't keep her hands off Chloe. I don't have any pictures of her actually touching Chloe because she was making me really nervous. (She's kind of clumsy.) I didn't dare step away for even a second to grab the camera. I managed to reign in the big sister, though, and all was good :-) They also put Chloe on "home going" oxygen. Her canula is only 1/8th of a liter, which is barely a poof of air in her nose. She's doing great with it! She didn't do too well with her bottle feeding, though. She only managed about 3 cc's. By the time they got around to feeding her, though, she had already been crying for about 20 minutes (I think from hunger). Not the ideal learning scenario. I'm no expert at feeding technique but I suggested that perhaps the Fedding Therapist start her bottles before she's thrown herself into a fit of rage. I don't know. Just a thought... But she did great at breastfeeding tonight. I harassed the nurse into finishing Chloe's assessment early (and threatened to whip out my you-know-what if she didn't finish before Chloe got upset) so that we could start feeding while she was still in a cooperative state-of-mind. She got 23 out of 35 cc's - her best showing yet! At least I know she's capable of suck/swallow. Now it's just a matter of getting her to do it on a bottle and we can take her home!
66: Day 108 - Chloe's Secret The feeding therapist couldn't make it in today. Fortunately, (before I had to say anything) the nurses decided it was silly for her to be the only person allowed to feed Chloe a bottle and that it would do Chloe no good to take two days off from practicing. The nurse practitioner put in an order for Chloe to get two bottle feedings plus one breastfeeding a day. And as Chloe's nurse tried to give her the bottle Chloe told her a secret. She said, "I don't like the taste of that yucky Elecare. I just like my Mommy's milk straight." So the nurse promptly prepared a new bottle of straight milk and voila! Chloe took 20cc's! That other lady wanted tag Chloe a "difficult feeder" and start all kinds of crazy stuff to "teach" her to suck and swallow. All Chloe needed was for someone to listen to her :-) Thank goodness for good nurses! They want to try some different fortifiers for her so that she can keep up her steady weight gain. 3lb 13oz now! Yeah! Unfortunately, I didn't get to go in tonight. Solana got a runny nose yesterday and my throat has been hurting all day. I called the nurse practitioner (already knowing the answer) to see if I should go in or not and she said No Way Jose! She gave me a visual of Chloe catching a virus and it wasn't a pretty one so I'm staying clear of the NICU for a while. I just needed someone else to make me do it. This is only my second day to not see Chloe. I know I'm totally spoiled - one more thing to be grateful for. I just hope she doesn't miss me too much. 12-10-09 New Background Check out the background my friend, Megan, made for me. I LOVE IT!!! :-D I have absolutely no idea how to do them so it's a perfect gift. Thaks Megan! You Rock!!!! 12-11-09 Day 110 - Single Mom-in' It Chloe updates are pretty simple these days. I used to call the NICU and get a report full of all kinds of information. Now I call in and get a 10 second report. It's kind of weird. I find myself stalling on the phone with the nurses trying to think of something to ask or talk about. But Chloe's doing so well that there really isn't all that much to talk about. She's slowly but surely getting better at eating. They're changing up the formula of her milk to something more palatable. Apparently, Elecare tastes really disgusting. They don't want to change it too quickly, though, and mess with her intestines. So there's still some Elecare in the mix. In addition, she's having endurance issues. Eating is a big job for such a small baby! She'll get there, though. They're feeding her a bottle every time she's awake for a feeding. And they've approved two breastfeeding sessions a day, too! Unfortunately, Dave had to leave town for a work trip for six days so I'll only make it to the hospital once a day for the next several days. That's ok, though. He needed to get some extra time in work. They've been ridiculously generous with his time off and I'm very apreciative of that. Dave has been taking time off ever since we were diagnosed with TTTS back in July. He took me to all my doctor's appointments, surgeries in Columbus, time off when we lost Leila, for the birth, and all of Chloe's important procedures, trip to Michigan, etc. It's nice that he's able to do this one little extra thing for work. And fortunately, I am once again surrounded by incredibly generous friends who are offering to watch Solana. I have five babysitters lined up for the next six days (and only one of whom I'm paying - the teenager across the street:)! Kim, Kathy, Ann, Dave, and Kelly - you are all my blessings this week and I am so thankful for you!!!! 12-13-09 Day 112 - 4 Pounds! She finally did it! She's 1815 grams and that equals...4 pounds! Yay for Chloe! My sore throat from the other day never amounted to anything. No runny nose, no cough, no sneezing, no fever, no aches. Nada. But yesterday I woke up without a voice. Still no other symptoms. I chalked it up to the weather playing havok with my sinuses and the nighttime drainage doing a number on my throat. I went in last night with a mask to breastfeed Chloe. (I felt like a total leper! But, although I didn't feel sick the mask was probably a good idea.) This morning, though, I actually woke up blowing my nose and coughing stuff up. I think my mysterious and elusive nighttime drainage is finally ready to reveal itself and is trying to turn into a sinus infection so I'm staying away from the hospital again and going to the doctor's office tomorrow. After a couple of hours of clearing all the junk out of my head I feel perfectly fine now (except my voice is still jacked up) but I figure it's best to go to the doctor first. I guess I'll just tell them to, "test me for everything and anything that could cause congestion." I don't know what else to do...?
67: In the meantime, Chloe is doing fantastic with the bottle feeding. She has drained ALL of her bottles since 8pm last night! It's like something finally clicked and she figured out what to do! I'm very excited to hear this - it means she's on the right track to coming home! It is still looking like she'll come home with oxygen. She's still on the 1/8th liter canula and is normally fine. In fact, her canula was hanging out of her nose most of the time I held her yesterday and I just left it to see what she did. She hung out around the mid-90's without the canula, which is great. When she gets mad and cries is another story, though. She'll drop down to the 70's pretty quickly when she's ticked off. I guess that'll take some time. I'm trying to imagine what it will be like with a baby at home and on oxygen. Will I be able to walk around the house with her or will we be stuck to one little corner of the house all the time? That hadn't really ocurred to me until last night so I guess I'll need to start asking. (Don't get me wrong - I'm not complaining. Just in planning/logistics mode.) 12-14-09 Day 113 First Family Photo. 12/5/09 | Ugh! It is sooo loud out here in my new big girl bed. Tell those loud nurses to hush! | (Gasp) Mommy! You gave me a fright!
68: Chloe has a fun and crafty primary nurse at night. She wasn't satisfied with these stocking pictures and wants to do them again but I couldn't help but posting these now. This is actually Chloe's stocking that she'll use every year. How cool will it be when she's bigger and she can say, "I used to fit in that stocking!"
69: The first time I got to help with Chloe's bath. 12/4/09. This was right before she moved into her big girl bed. The regular tubs were still a bit large for her (she wasn't a whopping 4 pounds, yet...) so we used one of those little bins they give you when you check in to the hospital. I don't know what those bins are really meant for but they sure are versatile! 12-15-09 Day 114 - My Arch-Enemy appened! After a measly two days away from Chloe the bottle has stolen Chloe's love from me! I tried to breastfeed today for 30 minutes and Chloe would give some little sucks and then just sit there waiting for the milk to flow into her mouth. Then, when nothing flowed into her mouth she'd get annoyed and turn away. For those breastfeeding vs. bottle novices: it's WAY easier for a baby to get milk from a bottle than the breast. They actually have to do a little work to get it from the breast - sucking, jaw action, pressure, etc. With the bottle, on the other hand, the milk will pretty much just dribble out with little effort on the part of the baby. Chloe quickly decided that she prefers the easy method to get her meals. (Note: Solana spent two days in the nursery when she was born and was given a bottle. I didn't know any better than to tell the nurses "um, okay" when they asked if they could feed my oh-so-hungry baby a bottle since my milk hadn't come in, yet. I then spend the next 6 months pumping full time for her because she wouldn't latch on afterwards.) | While it's certainly not the end of the world to have another non-breastfeeding baby I'm not giving up. The lactation consultant (who I really like) will be in tomorrow and I'm cornering her for as long as it takes to get Chloe latched on again. I only hope she's seen this before and has some good tricks up her sleeve. She told me that preemies usually go back and forth from bottle to breast with no problem. I'm holding her to that. I've also purchased some bottles my SIL told me about called Breastflow. They supposedly require the same kind of latch-on sucking that breastfeeding does. Maybe if we can get Chloe to eat from those bottles we can get her to latch on...? | My New Favorite Necklace Solana and I had girls night tonight with my friend, Angela, and her two girls. We saw the Princess and the Frog and then went out for sushi. We had a fabulous time! Before the movie we had a little gift exchange. Angela gave me a gift that almost made me cry. It's my new favorite necklace and I'll probably wear it every day. Before becoming the mother of an angel twin I could never have understood the range and power of conflicting emotions that I live with every day. I've read sad stories from other parents trying to find their way through their own emotions only to be hurt by family and friends who tell them to get over it or move on. I'm so glad I am surrounded by thoughtful and caring people. Even if they can't understand my feelings - they listen. And they have loving hearts. I will always see Leila when I look at Chloe and Leila will always be part of our family. How Angela gets that I don't know but I am so thankful to have her as a friend.
70: 12-17-09 Day 116 - I've Been Workin' on The Bottle.... She's working at it! Chloe is doing really well at the bottle. She's had a couple of really long periods (like 12-18 hour stretches) of taking her entire feeds by bottle and then she'll have periods of being too tired to take her bottle. I think her too-tired periods are getting shorter and more spread out, though, as she grows and gets stronger. 4lb 5oz, by the way :-D They actually have a minimum requirement that she has to eat - it's 35cc's every 3 hours. She took 84% of her feeds by bottle yesterday and the rest was given to her by her NG tube. I spoke to the nurse practitioner this morning and, since Chloe does not suffer from Brady or Apnea spells**, she can come home as soon as she is taking 100% of her feeds by mouth! That could be as early as Monday or Wednesday (the days they give Synergist shots - an important immunization required before leaving the NICU)! Plus, I want to thank you all for your encouragement on Chloe's breastfeeding hiccup. I tried the shield for two feedings yesterday and it worked great for Chloe! I guess it just makes it easier for her to get the milk out. She took almost her full feeds both times! **Brady (heartrate drops too low) and Apnea (baby stops breathing for an extended period of time) are really common for preemies and those are often the big hurdles to overcome before babies can go home. With all the problems she's had I don't know how in the world Chloe sidestepped those. It may be because she's past full term... I don't know, but I'm definitely not overlooking that as something for which to be grateful! 12-20-09 Day 119 - Bottle Chloe is: 119 days 17 weeks almost 4 months 4lb 6oz Working hard at the bottle. She's taken all of her feeds my mouth over the last two days with the exception of two. And those two were actually the fault of her nurse who put her bottle together incorrectly (ooooh, I was so mad!) yesterday. It's an annoying story that I don't want to write about but let's just say that that particular nurse has been added to the (very short) "you no longer have the privelege of caring for Chloe" list and we won't have to worry about her again. Dave and I took the infant CPR course today. Chloe is finally substantial enough to get her two month vaccinations and may have actually gotten them already. There's really not too much to report. We just need to see her take her feeds well for a few more days and she'll get the boot! Until then, Bottoms Up Chloe! 12-22-09 Day 121 - So much for our big plans... Our carseat is at the hospital. Chloe has had her two month vaccinations and Synagis (RSV preventative). Dave and I completed the CPR course and Chloe's NG tube came out. She also had her weekly eye exam yesterday and the doctor said the ROP is gone and she only needs exams every other week now. We're one foot out the door. Then, after I fed her last night she desatted. Big Time. She was in the 50's and started turning blue. It was like she passed out and turned limp. Her heartrate started falling - never below 100 but it was almost there. We couldn't get her to snap out of it and the nurse had to use the oxygen mask to finally get her back up after about 2-3 minutes. I was worried that I had triggered a vagal response when I tried to burp her and talked to the nurse about positioning. But then she did it again after her next feeding, which was given by the nurses. They did bloodwork and looked at her white/red blood cells. Those look normal so they don't think she's sick. Now they're looking at her bottle. I started using this great bottle called Breastflow. She's used it for a week with no problems so I doubt that's it but I think they're just trying to come up with any reason why she'd react this way after feedings. I hope they figure this out and it's something simple. I really don't want Chloe to have any more major problems. But it's kind of scary to imagine her doing this once she's home - which, I'm pretty sure won't happen this week. Bad Attitude This is for all of you who always compliment me on my upbeat and positive attitude. I'm completely depressed today. Chloe was almost home. I could practically smell her in our house. "She could go home in two weeks" was three weeks ago. I was ok with that but this setback has just hit me hard. I feel like a little kid pouting over something they wanted but couldn't have. And with all the crap Chloe has been through and all her suffering I can't believe I'm so upset about not getting something I WANT. How selfish is that?!? Anyway, don't bother telling me it's ok to feel this way and not to beat myself up. You all are so supportive and encouraging. I know you were about to hit 'Comment' and write that. I just needed to put it down and have one more good cry to get it out of my system. Solana is cleaning her room right now. I need to go play with her for a while. Hopefully now I can force myself out of this funk to do that well.
71: Bad Attitude has left the building Ok. I'm over it. My self-pity fest actually didn't take too long to peeter out. I worked hard in Chloe's room today and that made me feel better. Plus, I got a swift kick in the pants to remind me of what's important. Chloe will come home soon enough and I'm pretty darn lucky for that. 12-23-09 Happy 4 month birthday Chloe!
72: Merry Christmas | Love, Chloe!
73: 12-26-09 Day 125 - Coasting Can you tell I've been avoiding posts? I don't really know what to say because there's really not too much going on with Chloe. Her NG tube is back in. She's taking about 85% of her feeds by mouth every day. She's finishing her feeds for the most part but every once in a while she'll get tired and only take part of her feed so they just NG the rest (put it down her feeding tube). Fortunately, she hasn't had any more big episodes like the one she did a few days ago. They still think that was just a result of too much excitement/stimulation that day. They're not doing anything to prevent them in the future, per se, we're just watching her and giving her more time to grow and get stronger. We've had some controversy over Chloe's bottles. The feeding therapist introduced the Dr. Brown bottle and then I brought the Breastflow. After a few days on the Breastflow the feeding therapist was really impressed with the bottle and how good Chloe's suck/swallow/breathe pattern was when she fed from it. In fact, she thanked me (and my SIL, Carol) for introducing it to her and is going to integrate the Breastflow bottle into her program. But Chloe was on the Breastflow when she had her big episode so some people think it might be problematic for her. The nurses have been going back and forth with the bottles and I've called for updates after every single feeding the last few days; trying to find a pattern. I've finally decided that the bottle makes no difference. Good feedings and bad feedings happen with both. So last night I finally declared that we will stick with the Breastflow. Switching back and forth can't be good for her. Back at the homefront Dave, Solana, and I are all on antibiotics for sinus/secondary bacterial upper respiratory infections. We all caught an upper respiratory viral infection a couple of weeks ago. Apparently, enough snot stuck around to turn into sinus infections :-( What a Christmas! Here's me looking at the bright side: -It's a good thing Chloe's not her while we're all sick! -We should feel better in a day or so since we're on antibiotics. -Chloe's coasting around the same place. She's not getting apparently better but she's NOT getting worse. -My mom is in the air on her way here and that's ALWAYS a good thing! (She'll go snuggle Chloe tomorrow while I'm still keeping my distance.) -Dave and I will probably go to the movies this week - something we wouldn't do if Chloe was already home. Sigh. 12-28-09 Day 127 - Trying some changes Chloe has been on a few different medications for a while now. In an attempt to get her off of oxygen, she's been getting a couple of different diuretics. And because she's on diuretics she's also getting sodium and potassium. These are pretty foul tasting medicines. While some babies tolerate them, Chloe finds them utterly disgusting and protests taking them by mouth. This becomes an issue when they try to remove her NG tube. If they try to sneak it in by squirting it alongside her bottle she gags, holds her breath, and desats. If the mix it in with her milk she refuses her bottle. Today they decided that, since the diuretics aren't working to get her off of oxygen anyway, they'll stop them. And since she'll no longer be taking diuretics she'll no longer pee out all of her electrolytes they can also stop her sodium and potassium. The hope is that Chloe will be more successful in taking her feeds by mouth if she no longer has to take these unpalatable medicines with them. And also that the discontinuation of these medicines has no ill effect on her lung function. Please pray with us for Chloe. It's almost taken her a month to become successful at eating. And while we're being ever-so-patient in letting her figure this out it sure would be nice if this new change worked. Our antibiotics seem to have worked. My mom is in town until January 3rd. We sure would love to have Chloe home soon... :-D
74: 12-30-09 Day 129 - Problem I'm not sure how well you can see this picture. It was kind of dark and I didn't want to disturb Chloe with a flash. What do you see wrong with this picture? | Well, considering the poor quality of the picture I'll go ahead and help you. 1. Chloe is naked and in a heated bed. 2. She has a collection bottle at the end of her NG tube. 3. She has an IV in her right arm. Long story short: Chloe was exceptionally gassy last night during our visit. Even so, she did finish all of her nighttime feeds. This morning she was really irritable, though, and only took 1/2 of her 9am feed. I was there before her noon feed. Her nurse decided to pull back on her NG tube and, to our dismay, pulled back her ENTIRE feed from three hours earlier. They did an xray and her bowels are dilated and full of gas. We don't know what's going on with her. There are many possible reasons for this. They're first going to try and rule out an infection. They took cultures and started her on antibiotics. We'll get the final results on those after 72 hours. They're also considering a possible blockage in her intestines. I thought we were done with that but, apparently, that old rupture could still rear its ugly head in the form of a blockage even now. Ideally, her bowels will | just go back to normal overnight and she'll be fine in the morning. We have no idea what's in store. On my way home from the hospital today I was happily in attendance at my pity party and crying away in the van (my favorite place to cry). I mentally shook my finger at Leila and told her, "You're sup-POSed to be looking out for your sister," in my best Mommy voice. No sooner did I think that than it occured to me (she talks back to me quicker than Solana) that Leila was probably whispering in Chloe's ear all along to not finish her bottles so she could stay in the hospital longer and be in the best place when this happened. Whoops. I thought, "Sorry, Mija. You did a good job taking care of your sister. Love you :-)" 1-2-10 Day 133 - Bowel Rest Chloe is on her fourth day of bowel rest (or "starvation," as I like to call it). My poor baby! She's soooo huuuungy! They actually have her on TPN IV nutrition so she's not actally "starving" but her little belly is definitely grumbly. They still haven't figured out exactly why her bowels became dilated and she stopped digesting her feeds. But they have ruled out infection. Her antibiotics were discontinued today since none of the cultures yielded any growth. It seems like the possibilities are now either 1. it was nothing and they'll restart feeds again after seven days of starvation - I mean bowel rest, or 2. she has a partial or complete blockage in her intestines. They'll do another barium study on Monday or Tuesday. Hopefully, the barium study will show us whether or not she has a blockage. I keep telling everyone that I think she just had trouble with the similac forula they were giving her. She got really gassy and her stools started coming at inconsistent intervals as soon as they put her on it. Nobody is taking me seriously, though, so I'm sure my theory has no basis. If her barium study shows a blockage then that's obviously the problem. If not, I'll make sure we're really careful when we start her on feedings again. I sure wish she could be on just breast milk! 1-3-10 Day 134 - Padre Pio do your thing! Chloe had a couple of nice visits from Grammy and Mommy today. She cozied up to Grammy and slept for an hour and a half. After that I took my mom to the airport :-( since she had to go back home. I then returned to the hospital and spent a wonderful hour and a half with a fully awake and cute-tastic alert Chloe. So I submit to you these Chloe-rific photos (and no complaining about the poor quality - you should be used to my lack of photography skills by now ;-) : I took these three pictures today during Chloe's marathon 1.5hour alert period. Unfortunately, I only had my phone handy so they're pretty dark. Fortunately, Chloe's cuteness shines though!
75: Here's Chloe giggling at Grammy jokes. Chloe smiles ALL the time! I just never have a camera in hand when she does it. | My mom enjoying some quality time with her smallest grandchild right before her return to Houston.
76: I love this picture that I took yesterday. Dave doesn't spend nearly as much time as me at the hospital so he's not quite as used to Chloe's magic. I walked out of the lactation room to find him in the position - obviously overcome by Chloe's calming effect. | The last thing I did before leaving Chloe tonight was to bless her with some sacred oil that has touched the glove of Padre Pio. Our new friends/neighbors lent the oil to us and tell us that a family member's cancer disappeared after a blessing with this oil. We Catholics are a superstitious bunch - me included. I will take any special blessings sent our way! Chloe's Upper GI barium is scheduled for tomorrow morning at 9:30amET. Come on Padre Pio! Do your thing!
77: 1-4-10 Day 135 - Barium..Enema - Updated 6:30am I missed my 3am pumping alarm. Ouch! Called the hospital and Chloe's IV finally gave out. Thankful it lasted as long as it did but still sad thinking of her getting another one. (Seems trivial since she's already had like 30 IV pokes but I probably won't ever get used to it...) We're still on for 9:30 upper GI barium. 9:15am Dave stopped by the hospital on his way to work (I can't get there until I drop Solana off at school at noon). Chloe was already downstairs in radiology. Instead of doing an Upper GI Barium like they said they were doing a barium Enema. He said he'll call me when he gets more information. Prayers, please. 12:30pm I finally made it to the hospital after dropping off Solana at school. The enema went well and her lower GI looks good. They'll do the upper GI barium tomorrow. Results will take longer. We're hoping the test goes well tomorrow so she can maybe start eating again on Wednesday. The little princess has been upgraded to an open crib with bouncy seat option. From this new throne she welcomed her royal audience (rounds) today. 1-5-10 Day 136 - Upper GI - Updated It started snowing pretty heavily yesterday afternoon so I didn't make it to the hospital for my evening visit. I never really minded the snow until now. The worst the snow ever did to me was to turn my one hour commute in Denver into a 3.5 hour commute on occassion. That wasn't so bad. If I was carpooling it just meant more time to hang out with my friend and something to brag/complain about at work. Keeping me from Chloe, on the other hand. That's bad. The first picture is our Front Yard/Street and the next two are our Backyard. Solana is aching to get out there and play in it. With a temperature that currently feels like 6 degrees Farenheit, I'm procrastinating. | "Gather around. Gather around. State your business, please."
78: 3:00am - Chloe's primary nurse wasn't happy with the swelling around her IV so she put in a new one. The last nurse sidestepped my question about the new IV placement and didn't tell me that she had at least one failed attempt in Chloe's hand before putting it in her foot (I saw the mark when I visited Chloe yesterday at noon). Chloe's primary nurse, who I LOVE, made sure to tell me that she got the new one in on the first try. 7:30am - Still no news on the schedule for her Upper GI. It's super snowy out there! Dave's colleage called from the highway and said it's a parking lot out there! 10:45am - Chloe just went down for her Upper GI. They're feeding the barium to her from a bottle. The nurse said the flavor's ok and Chloe should be thrilled to eat something again. I've never tasted barium. I hope she's right. They'll do a few x-rays down there (in radiology) and then bring her back up to the NICU for hourly x-rays. It could take anywhere between 12 and 24 hours for the barium to make its way through Chloe's intestines. The NICU receptionist said that the roads aren't so bad. I'll probably head out there with Solana after lunch. 1:00pm Chloe is back up in the NICU and did well drinking the barium. They said that they noticed she swallowed a lot of air with the breastflow bottle. How easy of a fix would it be if that were the problem? Of course, the breastflow bottle was specifically designed so that babies do not swallow air. I asked for clarification as to how they made that determination. If it's true I'm more than happy to throw out the bottles. Solana and I will head over in a couple of hours. 4:30pm Solana and I made it to the hospital. She loves being a big sister so much. Chloe kept smiling whenever Solana stroked her forehead and sang Twinkle Twinkle Little Star to her. We're going to have so much fun when she comes home :-) The Upper GI test is going well. The barium is moving through at a good pace. We have received a preliminary report from the radiologists and it looks good. There doesn't seem to be any blockage. We have to wait until tomorrow for the final x-rays and report. 1-6-10 Day 137 - Restart Feeds / DC Oxygen The Upper GI report says there's no obstruction. They started feeding Chloe again today. She's getting 15cc's every 3 hours. This is 1/3 of what she was getting before she got sick. The latest theory, by the way, is that a virus got her and ran its course. I'm actually hoping that's correct because that would mean she's fine now. All she has to do is figure out this eating thing again. And as ravenous as she was last night, she should do well. The princess was held almost all night and our most favorite nurse, Gena, even held her royal highness for almost two hours after her 12hr shift ended (while she charted). While receiving all this indvidual attention the nurses noticed that Chloe's canula was often out of her nose and that she didn't seem to need it. So they spoke to the NP who agreed to try her without it. It's now 11pm and she's been without oxygen since 9am. Pretty cool! Of course, she may get it back whe she's up to full feeds again (it's harder to breathe when you have full belly - just think about how you feel after Thanksgiving). So we seem to be on the right track again. Praying that we can take some quick steps forward, toward, and out the door! 1-7-09 Day 138 - ... Are you getting tired of reading this blog? Because, I'll tell you what, I'm getting tired of writing it... Chloe's back on oxygen. She lasted a good day but then it just got to be too much for her. She was having some trouble with feedings last night and this morning - they did another kind of upper GI on her today because they suspected she was aspirating (breathing in) her milk during feeds. They determined that the milk's hitting the back of her nose. She's now getting a thickener in her milk that she'll probably come home on. She probably also has some reflux but they're hesitant to put her on medication for it. I think the doctors want to avoid more medication, if possible. They just want to watch and assess for now. Solana and I made it in to the hospital this morning before the snow really piled up but I'm stuck at home tonight. It probably wouldn't be sooo bad if Colt McCoy hadn't gotten injured. :-( 1-8-10 Blogging - Powerful Stuff It's interesting - this whole blogging thing. Sometimes I feel like I'm writing a simple log of Chloe's medical history. Sometimes I'm venting. Sometimes I'm figuring things out. Sometimes I'm reporting great news to our cheerleaders! Sometimes I'm begging for prayers (though not so often anymore - thank God!) And though I forget sometimes, I try and remember to share Chloe's beautiful personality. And then there are the reader comments. Most of the time I'm reminded of all the amazing people who have never met Chloe yet love and pray for her. I hear from Moms who remember their own past experiences through my story and find comfort in knowing that they've been there.
79: Writing has never been my "thing." I'm more of a numbers person. One of my English teachers, I think it was maybe Mrs. Dozier my sophomore year in HS, always said to "remember your audience." Sorry Mrs. Dozier, I forgot your cardinal rule. What I seem to have forgotten is that there are people out there who are emotionally invested here. And it makes perfect sense. If you pray for someone for four and a half months, feel joy with then, and cry for them, of course you internalize some of that. This is not the journal that I keep at the side of my bed (Duh!) I think I need to be more careful with my words. Lately, it seems as though I often open up the netbook to blog whenever I feel cranky and frustrated and I use the blog to get these feelings off my chest. Then I read my words, gain perspective, and feel much better afterwards. (The simple act of writing and reading your own words is really quite eye opening and clarifying.) Unfortunately, I don't usually go back and add postscripts to my blog. The truth is that yes, this is all quite difficult and frustrating. But that is not the umbrella emotion under which I dwell. I have three beautiful daughters who are unique and amazing in their own ways and who remind me of how blessed I am every single day. I have a husband who loves us, is super overprotective, takes care of us, tells corney jokes, and is also amazing. Chloe is our little miracle and we're lucky to have her. I guess what I'm trying to say is that: -I thank you sincerely and wholeheartedly for your encouragement and kind words and ask you to keep them coming! - I love that it's important to you that Chloe comes home safe and sound. -I will continue to use the blog as a sort of self-therapy AND keep in mind that I have an audience. Love to you all! Day 139 - Milk Ok - so now that I'm over Texas' loss I can write an update without being such a grump ;-) Actually, I'm quite proud of those guys for doing so well without Colt. And what a class act he was! "Glory to God... God is in control... You can't ask why things happen..." Chloe's IV went out last night but she seemed to be doing well tolerating feedings (she's still on straight EBM) so they just increased her to full feedings and stopped her TPN. Her newest daytime primary nurse, Betty (I'm greedy and now have two day and two night primary nurses for Chloe), decided to try a plain ol' generic nipple since she's getting thickened milk now. Chloe took all of her 45cc 9am feeding in just 11 minutes! Then she took another five because she was starving. Betty said she didn't spill a drop, gave a good burp, and was happy afterward. She also did well at her 12:00 feed. I told Betty, "I hope you have just discovered the final ingredient to Chloe's eating success!" And on the subject of milk.... I had to rearrange my milk in our deep freezer a couple of days ago and thought I'd share with you/show off what I've been doing for 20 hours a week since the girls were born. | Here we have one empty deep freezer: | Here we have the recent contents of said deep freezer (147.2 pounds of milk, to be precise): | And here we have one full deep freezer: | I have room for one more small box and then I'll have to start filling our side by side in the garage! Have I mentioned my new nickname? BESSIE!
80: 1-10-10- Day 140 - New Tricks and Techniques You'll never believe what Chloe did yesterday. I didn't see it so I'm not 100% sure that I believe it but three nurses swear that Chloe rolled herself from her stomach to her back twice. I'm not sure when she's supposed to do that but it seems kind of early for her to be doing tricks. They kept coming by yesterday and asking if I'd seen her new trick but I was there on a feeding mission and didn't have time to try it. They said she'd lift up her little hiney and waggle it around, get mad, then flip over! I'm sure it was spectacularly cute and hope she's in a performing mood today. I'm emptying my camera memory card just in case :-) She actually had a pretty good day yesterday. She finished most of her bottles and the chicken-bone coughs she usually does were non-existent. I've learned a few things in the last couple of days, too. On Friday night I tried feeding Chloe and she kept pushing the bottle out with her tongue. I thought maybe she needed to burp (even though she'd only taken 7cc's) but then she started falling asleep. Betty had finished her shift at 7pm and was off to the side charting for a couple of hours. She walked by on her way out the door, saw that Chloe wasn't eating (after a 100% success rate that day), and said, "Oh no [as in, I don't THINK so.]" She put her bag down and sat down to feed Chloe and show me some preemie feeding techniques. As it turns out, feeding a "difficult eater" preemie is a lot more complicated than feeding a full-term baby. As I sat there watching Betty feed Chloe I was simultaneously fascinated, focused on learning, grateful, and humbled. She learned these techniques at a feeding conference and they're certainly not intuitive so I don't feel badly about needing a lesson. But I couldn't help but feeling just a teensy bit stupid. Chloe took her entire bottle for Betty - yeah! Then her day nurse on Saturday mentioned "chin and cheek support." I came in for another lesson. She quickly showed me chin and cheek support (which I mastered with ease) and Chloe proceeded to finish her entire bottle. I asked for more because she still seemed hungry and she took an extra 30cc's! Right now she's doing a great job taking her feeds and everything seems to be going well. | 1-11-10 Day 141 - No more NG tube (again :-) Chloe has been eating really well. So well, in fact, that they decided (once more) to remove her NG tube. I've been praying a lot about this amazing turn of events lately. She seems to be doing really well the last couple of days. It ocurred to me that it's really easy to be thankful when things are going well. Not so much when they aren't. It's a person of strong faith who can exclaim, "Glory to God" when things did not go their way. I think I've learned a lesson here - something for me to practice in the future. So....Um...Can Chloe come home now? Hehe. | Mommy's feeling proud of her little princess. Chloe just finished her bottle! | Someone's outgrowing her preemie clothes! I LOVE this outfit!
81: Here's a close-up of chin and cheek support. Middle finger is placed under the chin and gently presses up to help keep her tongue/bottom lip latched on to the bottle. Index finger and thumb gently press up and in on the cheeks. (Too bad Chloe's cheeks are so small and hard to get hold of...) Pressure on the cheeks keeps her mouth in place and sort of reminds her that the bottle is in her mouth and that she's supposed to be eating. This is Chloe's big 2oz bottle :-) | Chloe eats in the "sideline" position. She lays on her side so that the milk flows into her mouth instead of straight to the back of her throat. This way she doesn't have to work so hard to keep the milk out of her airway. I just learned to cross my legs and put her bottom in the little "seat" created for her when I do that. Her back rests on my top leg. Feeling pretty proud of myself - can you tell? | 5lb 8.5oz | 1-12-10 Day 142 - Come on Chloe Chloe did great all day finishing her bottles but the didn't finish any of her bottles last night. She still has one more chance to finish a bottle before rounds today. Hopefully, last night was just a fluke and she's over it. Come on, Chloe. You can do it! You don't want that yucky tube back! 1-14-10 Day 144 - Avoiding The 'H' Word Chloe's still doing pretty well. She still doesn't want to eat at night but seems to be eating pretty well during the day. They've switched her to ad lib ad lib feedings. This basically means that she can eat as much as she wants whenever she wants. And instead of waking her every 3 hours at night they'll only wake her if she hasn't eaten in 4 hours. Plus, the nurse practitioner said she's no longer concerned with the exact quantity that Chloe eats every three hours (or even over a day). She's more concerned that Chloe is having good quality feeds and that she's gaining weight. (She didn't gain weight for about 5 days while we eased her back to full feeds). She has gained puny amounts the last couple of days so we'd really like her to start putting the grams back on. I've taken great pains to avoid asking about the 'H' word. It was too disappointing when they said, "maybe before Christmas" and then "maybe before the new year" and neither of those happened. (It might have also had something to do with the fact that those were holidays.) I decided I'm much happier in blissful ignorance - I just want to go in for a visit one day and see Chloe sitting in her car seat and ready to go. OK, maybe that's not so practical but you know what I mean... Anyway, I was talking to the nurse practitioner yesterday about Chloe's progress. She said, "All Chloe has to do now is keep up her eating enough to stay hydrated and gain weight over the next few days. If she does well this week she could go home on Monday. Would that be a good day for you?" Here's how I feel about that statement: "Oh Crap! I didn't want to know! Now, I just can't get too excited because that might not happen." / "Monday!?! Yippee!! Hooraay!! I can't wait for my little Princess to come home!!" Well, at least Chloe is blissfully ignorant...
82: Please Pray for Ayden Our NICU has two "old timers." Chloe and cutie pie named Ayden. Ayden is actually older than Chloe. He was born on August 5th at 23 weeks gestation. His parents are super sweet, super involved, and super young. I just adore them and I pray for them constantly. Ayden and Chloe have had a lot of the same problems. (They were even both in Michigan at the same time.) Only, Ayden's medical problems are much worse. Yesterday they got more bad news. I just wish I could wrap my arms around them and make it better. Will you please pray for baby Ayden with me? His mom recently started a blog for him and summarized the past five months in her first post. http://aydensjourney.blogspot.com/ 1-15-10 Day 145 - Puttin' on the grams Chloe put on 36 grams yesterday - the first day she was allowed to be a big girl and control her own feeding schedule. 36 grams may not seem like a lot but it's a pretty good amount for Chloe. She gained 8 grams the night before and didn't gain anything for 5 days before that. As it turns out, she's really hungry around dinner time and likes to sleep more at night. I'm sure not complaining! She's now 5lb 10.5oz. As my friend, Bev, says, "Praises!" I can't wait to visit Chloe during Solana's Pre-K today. She's usually super alert during the day for me. I only got to visit her yesterday evening and she was fighting sleep really hard. She finally lost her battle and pretty much snoozed the whole time I was there. She's gorgeous when she sleeps so I'm certainly not complaining but I do love those eyes! Besides, I was simultaneously enjoying her beauty and cracking up at the dad who seemed to be participating in a log sawing contest a couple of bed spaces away. Everyone was laughing at him, poor guy. If only his wife had been there to kick him in shin... Hehe. By the way, I've completely given up on being cool about Chloe's "eviction." | 1-17-10 Day 148 - Takin' Care O' Buisness We have a lot to do. Chloe should be evicted tomorrow.
83: Chloe's Primary Nurses | Betty Vicki Gena
84: 1-18-09 Day 150 (Note: I noticed at Chloe's discharge that my numbering was off by 1 day because I didn't include her birthday in the count.) Today is the big day. We are on our way to the hospital to pick up Chloe. Angela comes with us to document the trip with photographs.
85: We carefully washed our hands and arms before entering the NICU. We'd done this many many times during Chloe's NICU stay. This would be our last time scrubbing in.
88: Solana was excited to begin her Big Sister duties. She wore her Big Sister shirt for this special day.
89: Chloe loved her pacifier but she couldn't keep it in her mouth by herself. We carefully held it in place for her.
91: We waited a long time while the hospital finished paperwork and fixed an error by the oxygen company. We entertained ourselves the best we could.
93: It was a cold January evening. Chloe's Going Home Outfit was warm and snuggly.
95: We're getting ready to leave. Chloe is starting to cry - maybe feeling some anxiety about leaving the only home she's known for almost five months. But we know she'll love it with her family.
96: Solana helped to push the stroller down from the NICU. We were very anxious to leave but also slightly nervous. Chloe has never been away from doctors and we had grown used to that comfort. Traveling with oxygen was also a little unsettling at first because we didn't want to hurt our precious baby but we got pretty good at it.
99: Chloe is finally home. We're couldn't possibly be more thrilled. We are ready to begin our lives together as a family of four - all of us at home and together.