S: Our Young Shoot Chloe After Coming Home 2010
FC: Chloe Bea | 2010
1: THURSDAY, JANUARY 21, 2010 Home at Last! She's Home at Last! This has to be really quick. Chloe has, indeed, kept us on our toes these past few days. She's doing well, though, and we are sooooo thankful and blessed to finally have her at home with us where she belongs. I want to share so much of what we've experienced over the last few days but I'm still trying to figure out a way to function with our new addition. Let's just say I didn't do too well the first day. I spent two out of every thee hours feeding Chloe and pumping. Chloe can't really leave our bedroom because we only get 20 feet of tubing for her oxygen (they say that longer tubing won't work with such a low flow [1/8 Liter]) so I rarely leave the bedroom. I've reduced her feeding time to 30-45 minute increments and I'm only pumping every 5-6 hours now. We'll figure it out. We're just glad to have our little angel home and doing well. Home for the time being, that is. We have a deluge of doctor's appointments coming up: We've already been to the Pediatrition (I thought she was sick but she's not), Pulmonologist, Surgeons follow-up, Opthamologists, Feeding Therapist, and the Help Me Grow people already want to come and assess her for the HMG program (a state run program that will assign us a case worker who will follow Chloe until PreK and make sure she's developing and making milestones). This ought to be interesting. We're entering a whole new world of premie development. I'm not even close to ready for this (I've only had 5 months to prepare myself but...whatever..) But we'll figure it out along the way... By the way, my bff Angla went with us to the hospital on Monday to photograph. She said she took over 700 pictures! I won't upload all... She also made an amazing slideshow of Chloe's NICU time that already made me cry twice. I'll share the youtube link as soon as I get it. MONDAY, JANUARY 25, 2010 Week 1 at Home Wow! This past week has been a whirlwind. I can't believe a week has already gone by. So far so good. Chloe ate pretty poorly her first two days at home so I actually took her to the pediatrician because I was worried she was sick. (Also, her temp was hanging low - a sign of sickness in tiny babies.) She said Chloe's fine, though, and we'll go back in two weeks. We also got the ok to try a faster flow nipple on her bottles. She was just having to work WAY too hard to get the thickened milk out of regular nipples. We got a cool adjustable nipple from Avent and can just rotate the bottle to increase/decrease the speed. It's great because we can start her at slow speed when she first starts eating, the milk is still really warm and viscous, and she's all cylinders. Then we can just turn our wrist to switch to a higher flow when she slows down and the milk cools/thickens. It seems to be working. She doesn't take an hour to finish a bottle and I think that's good. An hour at work on a bottle is way too long for her. We also seem to have her pooping under control. We had to give her two glycerin chips, to make her poop, when she first got home. Sticking something up Chloe's bottom wasn't exactly the homecoming I'd envisioned for her but ya' gotta do what ya' gotta do, right? Since then I've been sneaking straight (thickened) breastmilk into her diet when she seems stopped up. It seems like she only needs 3 bottles of breastmilk every three days or so to keep the poop coming. Theoretically, straight breastmilk might hinder weight gain because it has fewer calories than herbreastmilk/formula as he examined her. He was tickled when I said I "hated" the pulse-ox monitor because he'd prefer we watch Chloe than the monitor. I thought that was interesting since he was supposedly the one who ordered it but he vehemently denied that and said he doesn't like parents to use them because he'd rather then watch the baby. The monitor is supposed to beep when Chloe's oxygen levels or heart rate drop below acceptable levels. It goes off all the time, though, telling me that my pink babies has a 55% (for example) blood-oxygen level or it's not picking up at all because she's kicking her legs. Crappy monitor! It works sometimes, though, so I think I'll keep it on when Chloe's alone sleeping or when we're in the car and I'm not watching her. He's concerned with Chloe's growth, though (join the club), and is NOT impressed with her weight gain since leaving the hospital. (He said 11grams per day but I came home and did some math and came up with a higher number.) She needs to grow new lung tissue and weight gain is an indicator of that. Anyway, no changes for today. We can expect her to stay on oxygen at least though the winter and that's fine with me. Come back in two weeks. He might consult the nutritionist and increase her calories if she hasn't gained sufficiently by then. Yikes!
2: CUTIE PATOOTIE Having Chloe home creates many more photo opportunities. She's SUCH a doll! Is it possible that she's even cuter now that she's at home BECAUSE she's at home? I've taken to kissing her a lot lately, too. Being in the NICU creates an extreme sense of germ paranoia. We're still very germ conscious. We keep antibacterial gel all over the house and I have to sneak into Solana's room at night to lotion up her hands because they're getting so dry from all the gel. (She squirts herself every time she wants to touch Chloe, poor baby.) Anyway, I never really kissed Chloe in the NICU. That sounds so sad all of the sudden - 5 months before kissing my baby properly. :-( Anyway, It's like I've found this new joy and she seems to like it too! I don't kiss her on the mouth or anything - more like her cheeks near her ear and neck. She just stared at me in fascination when I was doing it over and over last night. And I swear she was trying to kiss me back afterward (either that or she was just hungry and trying to eat my cheeks.) Whenever I would go in for another nibble at her ear she's open up her little mouth and plant one on my cheek. I LOVED IT! In fact, I can't wait for her to wake up so I can go do it again! Hehe. Isn't she gorgeous? Look at how tiny she looks next to Dave's hands. Can you just imagine if Leila were here? Oh my gosh - that would just be a ridiculous amount of beautiful babyness! | We were trying out headbands. She can totally rock a headband but I like to keep a hat on her because her temperature's been a bit on the low side since she's been home. | I really do hold Chloe sometimes...
3: This is our gorgeous Australian Shepherd, Bluebell (yes, I miss my Blue Bell ice cream). She is the best dog! And she has decided that Chloe is her baby. Ever vigilant she's always by Chloe's side. She loves Chloe. Her herding skills will come in handy when Chloe gets mobile. Oh, funny story. I lowered a swaddled Chloe so that Bluebell could sniff her and Chloe farted right as Bluebell started sniffing her. Bluebell immediately started licking Chloe's bootie area as if she were a puppy. So cute!!! | TUMMY TIME! Chloe enjoys herself some tummy time! This was taken right at the beginning - before the screaming and crying began. I always feel so bad for her during tummy time :-( | Super Girl! She has yet to roll over for us (the nurses swear she did it three times in a row for them a couple of weeks ago) but she's gotten pretty close. | Here Dave is giving her some moral support. It seemed to work. She got busy right after that.
4: SISTERS Solana adores her sister. Of course, we've already witnessed a tiny bit of acting out. I'm torn between maintaining a firm hand with her and letting it slide since she really has been neglected the last few days. If you know me at all you've probably already guessed that I've chosen the "firm hand" option. (With a side of obscenely excessive praise for praise-worthy behavior.) :-P Hopefully, we'll get back to a reasonable amount of "Solana time" really soon. | I love Solana's expressions in these pictures. | I think Chloe kind of resembles Solana in this picture. I never really thought that before... | Look at how she looks at Chloe. Love them! | Well, that's it for this week. I definitely will not be updating every day anymore. I'm lucky if I brush my teeth before noon! (And yes, I do believe I had brushed teeth in the above picture. Definitely no makeup, though!) Blogging is definitely going to fally by the wayside. It's been wonderful to read all the joyous comments of our friends and loved ones the past few days. It's so fun to hear Chloe's cheering squad in full force. :-D
5: WEDNESDAY, FEBRUARY 3, 2010 Week 2 at Home Hi everyone! As you can probably imagine I'm slightly busy these days. Plus, I think I'm too old for feedings every three hours. Chloe has been really restless and makes weird gagging/choking sounds all night long. (They told us in the NICU that she probably has mild refulx since most preemies do.) Those, and her kicking legs/beeping pulse-ox, have me at her bedside (which is 1 foot from my bedside, by the way) at least 3 times every hour throughout the night. I half-consciously declared, "Just one hour of uninterrupted sleep. That's all I ask!" when Dave walked out of the bathroom this morning. I opened my eyes and thought, "Did I really say that out loud?" Haha! Kind of funny, if you picture it. She's doing really well, by the way. She's eating like a champ and is up to 6lb 9.5oz! This is tremendous weight gain in my opinion. The pediatrician called it "not bad" this morning and even stuck with her "not bad" assessment after I asked if "not bad" really means "good." Oh well. She's kicking butt in my eyes, anyway :-D We met with the Help Me Grow lady this week. She did a little assessment of her own and declared that Chloe is not too far behind her adjusted age of almost two months. (She'll hook us up with the Early Intervention folks who will assign us a teacher. This "teacher" will come to our house and help us with different therapies to keep Chloe on track.) It's difficult to judge, though, since many of the tests are based on vision and we really don't know how much she can see. I don't think she looks at me nearly as much as she should. Instead, she stares at lights. Dave is sure that she was watching Solana this morning. Who knows. Solana's still a great big sister. We've reigned in the "acting out." Honestly, she really wasn't that bad. She just wasn't doing stuff we told her a lot of the time. The one that's acting out, though, is our house. That's right. Our house is jealous of Chloe. Since Chloe's been home we've: -replaced the furnace -replaced the garage door opener -had the trees trimmed -replaced the open/close mechanism in our chimney. While this has cost a lot more money than we planned on spending this month and we've said, "are you flippin' kidding me?" more than once we also can't complain. We have credit cards to pay for this stuff. We own a great house and, for that reason, occasionally need to do maintenance. I just hope our house gets over itself sooner rather than later... And one more thing to be thankful for. My pink eye last week. Yep. I got pink eye. I guess freakishly over-washing of hands does not prevent pink eye. No longer will I think of it as a sickness for toddlers and pre-schoolers who don't know how to wipe their behinds (eye-rolling). By some amazing fortune I didn't pass it on to either of the girls and it cleared up in just three days. Thank God! Definitely not a quiet week in the Hendrickson household! But we love drama around here. :-) THURSDAY, FEBRUARY 4, 2010 Nursing in our future? Maybe? Possibly? I actually posted the two week post a couple of days ago. But I wrote and posted the entry hastily and while distracted. After re-reading it a few hours later I didn't like the unintentional tone. I sounded like a whiney complainer and TOTALLY didn't mean to sound that way. I mean, I surely don't feel that way. I have nothing to complain about! And plus, I try to avoid unproductive complaining. It's pointless and ugly. Appreciating the irony of life - good and sometimes funny. Complaining and letting it bring me down - bad. Anyway, I told a story in my first deleted post that I completely forgot to share. And I think it's a good one :-) So, I've definitely figured out why the NICU ladies called Chloe and Princess (some called her 'Queen' and one even affectionately called her 'evil'). She...um..cries a lot. And by "a lot" I mean that she pretty much cries ALL THE TIME. Unless, that is, she's being properly entertained. Entertained with a bottle, by changing her diaper, definitely NOT by laying her down, but rather, usually while in my arms and with me in a standing/bouncing position. Dave sometimes makes fun of me and pretends that Chloe is telling me, "Dance Monkey!" while I'm bouncing her. It's funny but in a "You're so funny I'm about to bop you in the head" kind of way. ;-) I just hope that I'm getting a good thigh workout with all this bouncing and am not just screwing up my knees! Ok. Here's the story. Chloe was crying the other night and Dave and I were trying all our tricks to figure out what she wanted. She had just eaten an hour previous so we didn't think she was hungry until she turned her head in a rooting motion toward me. Dave went to get a bottle but her crying escalated and I couldn't wait for him. I flipped my shirt up and litle Miss Chloe latched on and begain nursing like there was no tomorrow. I couldn't believe it! You may have noticed that I stopped talking about nursing back in December when Chloe got sick? That's because nursing effectively ended when she went NPO (no feedings by mouth) and was put on an IV drip. Once she started eating again they put her on thickener and I was so desperate for her to conquer the bottle that I didn't want to rock the boat and never tried nursing again. The lactation consultant told me to practice non-nutritive sucking at home but...no time. I've now gone from pumping 8 times per day to 4 times and have played with the idea of quitting all together. Our deep freezer is almost out of room. But now I don't know. What if nursing could really be in our future?!? How cool would that be?
6: Supposedly, they're heat activated. I tried pressing gently on the part over her nose today and it already popped up leaving a hole for her to peek through. Yesterday I was all ghetto and used a piece of tape from her sats probe to make it stick from her nose. Looked pretty hilarious. Hopefully, I can figure this out before I resort to other sticky methods. They make some cute ones, though. I ordered the "girl" pack... | My mom sent the cutest valentine outfits. I couldn't resist a photo shoot in them. And I now realize that the headband didn't match. I didn't have any solids and it had hearts. Don't ask my sister about some of the non-matching catastrophes that were Solana's outfits as a baby. I don't know what my deal is with baby clothes. Haha! | And here's my cat Serafina taking advantage of an empty house. We arrived home to find her like this... | FRIDAY, FEBRUARY 12, 2010 Pirate Chloe - All is well in Chloeland. We sort of have a routine that includes MWF taking Solana to and picking her up from school. That somehow begins at 9am and ends at 3pm. What goes on in the middle, I couldn't even tell you... Tuesdays and Thursdays are our doctor days. We missed the big pulmonology visit this week because of snow so we'll go next week and find out how much Chloe has grown. She should be pushing 7 pounds by now. She has now officially outgrown her premie clothes and I'm plucking newborn clothes our of her room piece by piece. Hopefully, I'll wash and organize them all this weekend. She has TONS of really cute NB clothes that we received as gifts. I'm so glad they weren't all preemie clothes (now that she's outgrown them). Most of them are onesies with pants combos, though. Not too practical to pull outfits over her head with the canula or wear pants with her pulse-ox monitor on her foot. Fashion isn't always easy, right? We did make it to the Retinologist this week, though. These are the ones that checked her eyes in the NICU and did the laser surgery for ROP. On Wednesday they saw a vitrous hemorrage (blood) in her left eye. This was the bad one back in November. Fortunately, they didn't seem to concerned about it - as far as ROP goes. There's still no retinal detachment or signs of ROP.The problem is that the blood clouds her vision in that eye and her developing brain could just decide to stop working on that eye and put all its effort into the right eye. We had to go back on Thursday to see the pediatric opthomolagist who said we need to patch the good eye until the bad one clears up. So, without further ado I present to you... Valentine Pirate Chloe! Aaargh!Hopefully, the patch works. She has to wear one for half of her waking time every day. They're kind of like big bandaids that are a little less sticky and only really annoying thing about it is that the part that goes over the bridge of her nose never wants to stick. I just ordered a bunch online and read the "tricks."
7: Clarification on Nursing I think I need to clarify something about my last nursing post. It's pretty cool that so many people are so excited about the fact that Chloe might get to nurse. You'd kind of expect most people to say, "So what? A bottle is just as good. Why don't you just get over it?" I know a bottle is fine but I feel like being greedy. Chloe's probably my last chance at nursing. I blew it with Solana by giving up too quickly. I was young (a mere whipper snapper at 30) and took it personally, I think, that she didn't like my milk makers. I cried many times trying to latch Solana and couldn't get over myself enough to revisit the idea once I'd given up. Of course now I am 5 years older and much more matuuuure. Now that I might possibly have a chance with Chloe I'm going to give it every opportunity to happen that I can (reasonably) give. I think I may have misled in my last post, though. A few friends have asked how the nursing is going, or if I'm nursing exclusively now, etc. Unfortunately, we're not nursing. Chloe needs thickener so that she won't aspirate her milk and milk in the lungs is not something I'm willing to risk for the sake of nursing. We'll go back for another "feeding study" in March to reevaluate her feeding. I believe they'll feed her barium again and watch it with x-rays to see if it goes down "the right way" or not. Until then I'll just have faith that she's talented enough to remember how to nurse and perhaps throw in some "dry runs" for practice. Thank you for all your support. In many ways this seems trivial considering everything else she's been though. But it would also be really nice to have this one bit of normalcy in her otherwise crazy first year :-)
8: SUNDAY, FEBRUARY 21, 2010 Update - VIsit from Lala As I type this message Dave is driving my sister, Leticia, to the airport. She arrived from Houston on Wednesday evening and spent a wonderful four days with us. Here she is about to see Chloe for the first time. Can you tell she's excited? | And here she is taking her first peek at her newest niece... Her main goal in visiting was to hold Chloe LOTS and she definitely accomplished that goal! She was an awesome babysitter and it was great for me to get a little break, too. They say that the first few months having a new baby at home are trying and they're not kidding! I don't want to sound like a wimp but if I'm being totally honest the past month with Chloe home has been utterly exhausting! Wonderful, but exhausting! (I don't remember it being this way with Solana but there are a lot of differences. I'm older, we already have another child, Chloe's seriously high maintenance, and I'm OL-der... ;-) It was nice to have a helper for a few days. I let Aunt Lala change diapers, feed, and hold Chloe as much as possible. Dave and I even made it out Saturday night for dinner and a visit to the theatre for my birhtday gift - Wicked! Such an awesome show - I loved it!!! And as it turns out, Dave and I actually DO still enjoy eachother's company! Haha! Leticia also organized a little birthday party for me. Solana made me a crown and they had cake, balloon, cards, banner... All a girl could want on her birthday :-) Solana selected the cake with BLUE icing because that's my favorite color. Here we are enjoying the cake... And the final treat , my parents sent me some birthday money so I decided to go on a shopping trip to Kohl's. Leticia, who has WAY more style than I, acted as my personal shopper and helped me pick out a ton of cute tops. Thank you Leticia! Your visit was such a refresher! I feel like a new woman :-D
9: Chloe loved her time with Aunt Lala. This is what Leticia usually looked like during her visit (smile included). Solana loves her Aunt Lala, too! She had just a few photo shoots with Chloe. I ordered a bunch of gigantic flowers for Angela to photograph her in. We just couldn't help ourselves today, though. The outfit is a gift from my friend, Melissa. So cute! We had a little scare with Chloe getting a cold and congestion last week. We took her to the Pediatrician twice but they tested her for RSV (a really common virus that affects the respiratory system and would be really really bad for a baby with chronic lung disease to get) and it came out negative. Whew! She seems to be doing much better now. We also went to the hospital on Wednesday to get her Synagis shot (RSV preventative) and they weighed her at a whopping 7lb 8oz! She's amost to Solana's birth weight of 7lb 14oz! I can't wait to get pictures of her at that weight so we can have matching baby pics :-) Here she is chillin' out in her swing. The awesome hat and blanket were crocheted by Dave's sister, Carol. Thank you Carol! We love your hats and blankies!!!
10: TUESDAY, MARCH 2, 2010 Where to Begin Oh my gosh. So much has happened in the last 9 days, since my sister left, that I don't even know where to begin. How about doctor's visits. Last week Chloe saw the: Pediatrician - 6 month checkup. All is good. :-) Nutritionist - This is the NICU nutritionist who followed Chloe at Children's. We need to switch Chloe to Neosure because the Similac Special Care she's on now is not sold retail. She's aware of the Pulmonologist's desire to change Chloe's diet due to her lack-luster weight gain so she wants to do it before "they" try to do it. We'll be mixing Neosure powder with breastmilk to make a 30 calorie formula. Her current formula is 1/2 breastmilk mixed with liquid formula. I kind of like the new formula because it's ALL breastmilk with powder added. I just hope the high caloric content doesn't give her any problems. We're transitioning her slowly for now. Opthamologist - Vision in her left eye is definitely improving but he suspects there's still blood in there. Let's keep patching. Retinologist - Yep, there's still some blood. But it's probably not enough to warrant a vatrectomy. We need to continue to watch it because vitreal hemorrage puts her at risk for retinal detachment. I thought we were past that... So, we'll keep the patch on and take her back in two weeks. And this week she saw the Pulmonologist. I was nervous after his "keep her on a short leash" comment. But guess what! She's gained 23 grams per day (up from 11) this month! I decided she likes it when Mama feeds her :-). And the Pulmonologist was downright pleased with that weight gain. We'll see him again in one month. At that time, we'll start to discuss weaning her from oxygen. If all goes well she could be off oxygen by May or June! Chloe is now 20 1/2 inches long and 7lb 10.5oz :-) In other Hendrickson business. I was dreadfully sick this weekend. I thought it was some sort of 24 hour stomach flu followed by mastitis (milk duct infection) but I saw the doctor today and he says the bathroom incident Sat. morning and fever could have been caused by the mastitis. We didn't know what it was Saturday morning (I didn't notice anything on my breast until Sunday afternoon) so I was quarantined to the back room all weekend. I thought I was better and was working my new lump out yesterday but started to feel sick again yesterday afternoon. I'm finally on antibiotics and working the lovely warm compress. In addition, I went to the OB yesterday because I got paranoid all around about my health and had them check the placement of the IUD I got in October. Yep. It's in the wrong spot. They'll be removing it and replacing it. If you have an IUD you know just how painful the removal and placement processes are. I'm NOT looking forward to both at once that but also NOT wanting to get pregnant. And then there's our most embarrassing medical problem. It was one of my worst-mom-ever moments. Two weeks ago. Solana and I were about to brush her teeth for bed and we were giggling and playing. I squeezed her shoulders in a shoulder-massage motion (which I knew tickled her) and she did something I didn't (but should have) forseen. She reflexively flung her head forward and straight into the marble counter. Screeming Solana. Bloody lip. Sore teeth. GUILTY Mom. None of her teeth were loose, though, so we thought she was ok. Then, last night I noticed one of her teeth turning brown. :-( She'll see the dentist tomorrow. I'm so nervous. How old are kids when they lose their baby teeth? How dark will this tooth get and how long will she have to have a brown tooth because of me? Oh - the guilt of hurting your child kinda sucks. I feel like such a jerk. Fortunately, she can't see it and doesn't mind (yet). Dave just read online that it will probably change back to white in 6 months or so. Oh I hope that happens before any kids point and laugh! So that was pretty much our week in a nutshell. Lots of medical. In the end, though, this is what really matters right? And this is where I have the CUTEST video of Chloe smiling...I started writing this post Tuesday morning and now it's Wednesday night. I've tried to upload the video several times today.... Now it's time for bed... P.S. We went to the dentist today and Solana's tooth will be ok. It'll either stay a light shade of brown or return to it's normal color. It's not too obvious. I'm done beating myself up over it. :-) MONDAY, MARCH 8, 2010 Chloe's 6 month Photos - Sneak Peek My awesome friend, Angela, is also an awesome photographer. She was here Saturday for a photo shoot and posted a few pictures on her blog. She's done such a fabulous job! I'd love to wait for them all before posting here but am too excited to hold back. Check out my beautiful little girl... http://dandeliondreamsphotography.blogspot.com/2010/03/some-pictures-for-chloe-6-months.html Thank you Angela!!!!
14: TUESDAY, MARCH 9, 2010 Swallow Study Chloe passed her swallow study today. No more thickener in her milk. Yeah! I still need to mix some powder formula into my breastmilk to boost the calories in her food. But I just might sneak in an attempt at breast feeding once a day or so. :-D Tomorrow we visit the retinologist and opthamologist. If the blood has cleared out of her left eye we just may be able to ditch the eye patches, as well. WEDNESDAY, MARCH 10, 2010 Michigan Here We Come Well, I decided today that I have zero intuition. I had a really good feeling about today's eye exams. But, unfortunately, I suck. Chloe still has blood in her left eye. After a month, both the opthamologist and retinalogist are nervous. The concern is that the blood is blocking her vision in that eye. She's still developing her vision, synapses are connecting, etc. Inability to see because of blood could have long-term effects on her vision. They're sending Chloe to the experts in Michigan and anticipate that they'll to a vitrectomy. As of this moment we're waiting for the local nurse to hear back from the surgical scheduler in Michigan to tell us when they can fit Chloe into the schedule. The ironic thing about this trip to Michigan is that my parents are coming from Texas for a week. They arrive Friday. If you recall, my parent's last week-long visit to Ohio (for Thanksgiving) coincided with our last trip to Michigan. Apparently, they have some kind of radar to know exactly when we'll be needing them and plan their trips accordingly. Thank God for my awesome parents. As far as the vitrectomy goes - I don't know of any dangers/concerns inherent to the surgery itself. Of course, Chloe will be anesthetized, intubated, and her eye will be sliced. I find none of these things appealing. But the vitrectomy itself should have no affect on her vision and she should heal from it. Hopefully, it will save her vision. I'm ahead of myself, though. They haven't even seen her. As of now we don't know when we're leaving or even if she'll have the surgery. I'll keep you up-to-date as much as possible. THURSDAY, MARCH 11, 2010 Michigan Delay I received a call from the local retinalogist's nurse today. The exam/surgery will be the 19th (next Friday). The retinalogist originally said he wanted Chloe there this week or early next week but, apparently, there's some big conference going on in Vail next week. All of the surgeons in Detroit will be at this conference. Their schedules were all booked for this Friday in preparation for a week away and they'll be back just in time to take Chloe next Friday. On the one hand I'm glad for the week delay because we get to spend it with my parents. On the other hand, I was under the impression that the longer we wait the more likely Chloe's vision will be damaged. I drilled the local nurse about it this morning (none of the doctors were available, of course) and she assured me that, if it were a problem to wait, the local doctor would have said something when they booked the surgery date. I was glad she was so "sure" of that but asked to have the doctor call me back, anyway. It's too bad the two doctors who've actually looked at Chloe's eyes this past month are both out of the office for a week. I missed a call back from a third doctor in their practice but she'll call me tomorrow. She will surely tell me that the possible detrimental effect of waiting a few days is negligible compared to the benefit of going to the world renowned doctors in Detroit. I just want to hear her say that. We'll be patching Chloe's good eye in the meantime. Dangit Dangit Dangit!!! A few hours after discussing the delay on Chloe's eye I received a call from the Pediatrician's office. The nurse informed me that our Ped received the Swallow Study report and that she recommends we continue thickening Chloe's milk. Um. No. I helpfully informed her that Chloe was already released from thickener by the Speech Therapist at the hospital. She went to talk to the doctor and came back. Well, the doctor is not comfortable with the fact that there were 5 (slight) penetrations during the swallow study and she'd worry about aspirations (breathing the milk into her lungs) if we quit the thickener too soon. I argue that Chloe had to wait an extra hour to eat and was STARVING - eating with atypical ferocity - during the study. Plus, the speech therapist and radiologist noted that the penetrations were mild and came right back out (I'm practically begging them to see reason here...). She talks to the doctor again and comes back. The doctor said that "if it were HER daughter she wouldn't take the risk of her aspirating and getting pnuemonia." Well...shit. She played the Wild Card. Like I'm going to argue with that...
15: So we're back on thickener. It's really not a big deal once I got over the initial disappointment. In fact, I felt kind of silly arguing it with them. But... I did negotiate one breastfeeding per day (with extreme caution) so that's a good thing. We THOUGHT we were on a roll this week. I can hear some obnoxious junior high voice in the back of my head yelling, "PSYYYCH!" Punk. SATURDAY, MARCH 20, 2010 No Vitrectomy, Cataract The trip to Michigan went smoothly. Dave and I drove Chloe up on Thursday afternoon and spent the night at the Westin. They gave us a really good hospital rate of $72 so we were pretty happy with that. It was only 15 minutes from the hospital - pretty convenient. We had to be at the hospital at 8am for Chloe's 9:30 EUA (Examination Under Anesthesia). Chloe had the same Anesthesiologist as the first time. I drilled him about the anesthesia for about 15 minutes making sure I knew exactly what he planned to do under every possible circumstance and telling him every scap of information that I thought might be important to him. I was NOT going to have another surprise propofal "incident."** We then met with the surgeon. We've been patching Chloe's eyes to try and avoid lazy eye. He discusses with us the different schools of thought regarding this. Some doctors think there's a problem after 6 weeks of clouded vision and some after 9 weeks of clouded vision. We believe Chloe's had clouded vision for about 5 weeks so that comforted us a bit. He would go in for the examination and then come back to talk to us before beginning any procedure. He returned with surprising news. After four weeks of retinologist visits and another week waiting for our appointment in Michigan, the blood is gone from Chloe's left eye. She does not need a vitrectomy. What a shock! Surprise! Great! Then he went on to explain that Chloe has a cataract that is clouding her vision. What a shock...surprise...not-so-great. She'll need surgery to correct the cataract but he doesn't do that surgery. We'll need to work with Chloe's opthamologist to get that correct. So we find ourselves headed back to Dayton much more quickly than expected. I feel pressured to figure this out right away. We cancelled Chloe's Wednesday Synagis appointment because of Friday's anesthesia. It's now scheduled for this coming Monday afternoon. I'm worried, though, that Monday's synagis shot could delay possible cataract surgery by a few weeks I don't want to get the shot and then have them say, "Oh, we wish you'd told us about that shot. We could have gotten Chloe in for surgery tomorrow but now she has to wait two more weeks...". Unfortunately, the opthamologist was out of the office Friday. I spoke to his Technician and she said she'd try to get ahold of him at home but I never heard back. I know that putting off her Synagis shot is bad (this is her RSV preventative) but, if they can get her in for cataract surgery right away, I think I'd rather put off her Synagis another couple days and get the surgery. Of course, I have no idea what kind of timeline they can give me for surgery... I'll be burning up the phone lines right away Monday morning and in suspense until then. Any words of experience or advise would be much appreciated here! How bad is it to put off her shot another few days? Until then we continue patching Chloe's eye and wait. **He assured me that he would NOT use propofal for either the examination or the procedure (if they chose to do the vitrectomy) on Chloe and noted that it wouldn't even be a good choice for her case. Why they used it for her second EUA last time, he could not explain to me - I didn't dwell, though. THURSDAY, MARCH 25, 2010 Cincinnati for Cataract Surgery It's unbelievable how complicated the treatment of Chloe's eye has become. We were seeing the Retinologists and also the Opthamologist in Dayton. Then they sent us to the Retinologist in Detroit for the vitrectomy. He then sent us back to Dayton for treatment of Chloe's newly diagnosed cataract. But the opthamologist in Dayton informs me that, although he specializes in cataract surgery, the proper equipment to do cataract surgery on such a small baby does not exist in Dayton. He COULD do the surgery at one of the Dayton hospitals but 1. he doesn't have privileges there and 2. it's not a Children's Hospital so it's not ideal for Chloe. He's going to refer us to Cincinnati. I immediately jumped on the phone with this, the fourth practice involved in Chloe's vision care, because I really want to get the ball rolling. My understanding is that the longer Chloe goes with impaired vision in her bad eye the more likely amblyopia (lazy eye) will set in. I spend the next two days constantly making phone calls (ALL the nurses now know me) and hovering around the phone waiting for return calls and thinking Chloe will get surgery by the end of this week. I finally speak to the head of pediatric opthamology in Cincinnati and, having reviewed Chloe's records, she is of the opinion that Chloe's eye is pretty much screwed up already and her cataract surgery is not
16: emergency. They'll get us in for an examination next week and operation room the following week. This is not what I expected to hear. I try to convince her otherwise and move up the schedule...but to no avail. I'm in tears and completely freaked out. I call the local opthamologist and retinologist. The opthamologist agrees with Cincinnati. He says he doesn't have the power to make them do the surgery right away and, even if he did, he couldn't argue that it would make a difference because he didn't believe that. The retinologist says amblyopia is not his expertise - it's that of the opth. The division of jurisdiction between Opthamologists and Retinologists is very annoying, by the way. It was the retinologists that led me to believe we're in a hurry and now they say it's not their place to say. So, after a few dozen phone calls and lots of frustration we are left waiting and patching. For what reason? I don't really know. It's just the only thing I can do at this point to help Chloe. Feeling a bit helpless and frustrated. Can you tell? At least we can continue to pray and hope for the best. We can also be glad that the retinologist she's scheduled with in Cincinnati is something special. Supposedly, he has the rare ability to bridge the responsibility between retinology and opthamology. If Chloe needs work in both the front and back of her eye he can do both (instead of sending her elsewhere). Dave researched him and says that he also practices in at the #1 nationally ranked pediatric opthamology hospital in the US. Oh...the next two weeks can't be over soon enough! In the meantime, Chloe did receive her Synagis shot on Monday and, since she won't have surgery for at least two weeks, she received her six month vaccinations yesterday. It kind of disturbed me yesterday how calm I was as she was poked five times over the last three days. I was in tears every time Solana got shots as a baby. Now I hold Chloe while the retinologists uses a tool to pull/hold her eyelids apart for an eye exam and I contemplate turning up her oxygen as she turns purple screaming (you know the one that's silent because they're not breathing?) during her vaccinations. Should it be possible for a mother to be conditioned to her child's painful medical procedures? Sigh. I'm sure it's fine but just struck me as odd that I didn't cry. (Don't get me wrong. I haven't lost any of my motherly desire to make her feel better. I balked when the nurse wouldn't get another nurse to help her so they could give two shots at a time making the four shots go by faster. And I scooped up my poor distressed baby to make her feel better as soon as shots were done!) MONDAY, APRIL 5, 2010 Happy Easter from Chloe I am such a blogger slacker these days! 10 days since my last post? I'm going to lose all my followers! Let me give you a little incentive to come back. Here's Chloe's Easter/Spring greeting to you | Update We went to Cincinnatti last Wednesday to have Chloe's eyes examined. The doctor agreed that she should have surgery to remove the cataract. He said there's still a tiny bit of blood and that he could also remove the vitreous (gel in her eye) and the blood would come out with the gel. But he recommends removing the cataract and leaving the small amount of blood behind to go away on its own. Her history of vitreous blood dissippating on its own leads me to agree with this. No unnecessary surgery - thank you very much. He does surgery the 2nd and fourth Wednesday of every month so she'll have it in a week and a half. This guy seems good. Kind of a jerk but that seems to be the norm these days. I'm not sure but I think all the good doctors have been watching 'House' lately and think it's cool to be impolite. Whatever. If he can fix Chloe's eye I'll be happy. I didn't know this but removal of the cataract means removal of her lens. How can she see without a lens you may ask. She can't. She'll need to be fitted with a hard contact lens. Yep. That's right. I'll be placing a contact lens onto my infant daughter's eyeball so she can see. I don't know the details of this but I can only imagine. As much of a fit as Chloe throws when I put her patch on I'm sure the insertion of a contact lens will be a lovely calm process every day. HAHA..HA..Ha......ha....Sigh. We'll see how that goes. Until I talk to an opthamologist I won't really know the practical details. This will only last through
17: elementary school, though. Toward the end of her elementary school days (that's when her eyes are done growing - for the most part) she'll be able to have a surgery to implant an artificial lens into her eye. Now I'm off to call the opthamologist. I'm going to call a new one, though, because I'm not super duper pleased with her local one. I'm thinking the one at the Children's hospital (who also cares for one of the neonatologists at Chloe's birth hospital and my high risk OB's daughter) might be a good bet. Wish me luck! | Perspective For some reason I was recently thinking about Solana's infancy. Shortly after we brought her home she was diagnosed with hip displasia. Meaning, her hips kept turning themselves out of the socket (or something like that). She was fitted with a brace to hold her legs in a position that would encourage them to stay in socket. Eventually (after 11 weeks) we were able to take the brace off and she's been fine ever since. The brace was slightly obnoxious. It was difficult to change her diaper, her legs were always spread in an awkward position, and we could only take it off for baths. I remember bringing her home from the doctor's office with it on and changing her diaper with it for the first time. I bawled. Seriously. I cried my eyes out. I felt so sorry for her and and embarrased to admit, felt sorry for myself. "Why can't I just have a normal baby," I thought. Oh my gosh. Perspective, right? Not only has Chloe been through a million times more than Solana with her brace but she'll face a lot more challenge throughout her life. Do I feel sorry for myself. No way! Ok, well, maybe at times. But not very much and I get over it pretty quickly. I have to remember how lucky I am to even have Chloe. This experience has opened my eyes to see the blessings in the little things and remember how beautiful and blessed my life really is. But, having said that, I recently reminded myself that every person's challenges are their own. As silly as it recently seemed that I was THAT upset over Solana's brace....well, that was my challenge at that time. Of course, I got over it quickly enough. I mean, I didn't cry every day for 11 weeks but it still kind of sucked. And I grant myself that. I was talking to my friend John the other day. His puppy was really ill. A mutual friend told me he may lose his puppy and I was worried about my dear friend. Losing a pet is hard. I called him and happily learned that his puppy will be ok. John said, "but that's nothing compared to what you've been though." Sure you can't compare a sick child to a sick dog. Apples and oranges. But having a sick dog sucks big time! If that's what you're going through at that time you have every right to feel whatever emotion comes your way - no matter what your friends (or anyone in the world) is going through at that time. What's important to me, though, is to let that emotion run its course. Let it do what it will with me and then pick myself up and move on. Remember the blessings. Be thankful. And be happy. WEDNESDAY, APRIL 7, 2010 Pulmonologist Visit Chloe visited with my favorite doctor yesterday - the Nigerian pulmonologist with the cool accent. He was once again very impressed with her weight gain (she's over 10lbs! Gasp!) His instructions: Turn off Chloe's oxygen for feedings. If she eats the same amount without tiring, at the same speed, keeps her color, etc., then continue daytime feeds without oxygen. After a week of success we can take her off oxygen during the day! She'll only need it at night! So exciting! We'll see him again in 3 months :-)
18: MONDAY, APRIL 5, 2010 Solana vs. Chloe Who makes a better Popeye the sailor man? And how on earth can they look so different? Of course, Chloe's picture was taken a few weeks ago. I've heard she's starting to look like Solana now... :-)
19: MONDAY, APRIL 12, 2010 Lipase A few months ago I was doing research via my fellow blogger, Megan's, blog. Her Crew's story contained enough similarities to Chloe's that it was actually extremely useful in preparing me for what awaited us. I remember reading her entry about throwing out her frozen supply of breast milk because her milk contained too much lipase - an enzyme that made the milk taste metallic and soapy (basically really gross) after being frozen and then thawed. I remember thinking, "Oh my gosh! If that happened to me I would FUH-REAK OUT!" Well, I'm borderline freaking out but not as bad as I imagined.... A few days ago I started dipping into my supply of frozen breast milk. Chloe is drinking more as she grows and I'm pumping less often so it was inevitable that I'd need a back up. I wasn't worried, though. I probably have 200 pounds of frozen milk in our deep freezer! During one of my usual bottle temperature tests I dripped a few drops of milk on my wrist and then cleaned my wrist with my mouth. Yes, I taste my own breast milk on a daily basis. It's not so weird so stop making that face. Plus, I make a habit of tasting things that go into my children's mouths. Anyway, I noticed the milk had a weird fishy taste. The milk was from September so I thought, "That's odd. Maybe I ate fish that day...?" Then it happened again. And again. After the third bag of frozen milk I decided there was no period that I ate fish three days in a row in September. There's something wrong. Chloe never rejected the milk or had any kind of reaction to it so I wasn't too worried. I decided to do a taste test. Tasting the milk "straight" (it's usually mixed with Neosure), revealed the "fishy" taste times ten! What the heck is that?!? My fresh milk tasted good. Then I remembered Megan. She described her milk as soapy and metallic, though. I made Dave taste it because I wanted to rule out the possibility that the milk had just soured. He was less than pleased and made a face after tasting the fresh milk. I rolled my eyes and was about to say, "forget it." But then he tasted the frozen milk and used the word "metallic." CRAP! The lactation consultant is off today and Chloe's nutritionist isn't familiar with this condition. (What? Something Crappy AND Rare happening to us? What a shocker! ;-) Based on my online research and from talking to Megan the milk should be safe. It's just a flavor issue. Megan and I are guessing that the Neosure flavor is covering up the lipase flavor just enough explaining Chloe's cooperation in drinking the yucky stuff. The nutritionist is sending out an all-points-bulletin to her nutritionist friends to ask if it's ok for Chloe to drink the milk and is checking with the Neo staff. In the meantime I'm using my February milk as backup. That has a less yucky taste. Time seems to have something to do with the intensity of the lipase. So if they come back with the OK to feed Chloe my lipase milk I'm faced with a decision of what to do: -Feed Chloe the old stuff before it gets even worse (while she'll still take it), letting the new stuff age in the freezer potentially making it unpalatable, as well. I could decrease my pumping to only two times a day - saving energy and requiring the use of more frozen milk quickly yet maintaining my ability to make milk...? OR -Start with the new stuff and expect to eventually throw out the old stuff since it would theoretically get worse with time. I'm not good at making decisions.... MONDAY, APRIL 12, 2010 Smiling and Snoozing I know these three pictures are virtually the same but I couldn't decide which was cuter so you get all three! :-)
20: I noticed a picture on our wall today. It's of Dave laying on the couch with infant Solana asleep on his chest. It ocurred to me that he never does this with Chloe. Granted, she's older than Solana was in the picture. I mentioned it to him when he got home from work today and here's the result. | I guess it works for Chloe, too. She looks pretty darn comfortable! | I should also mention that this happened right before dinner. Dave didn't want to disturb her so I ate my dinner and then came over and fed him while he played mattress to the little princess. Solana thought that was just about the funniest thing ever. We were all cracking up so hard I don't know how he didn't choke or, at the very least, wake up Chloe! TUESDAY, APRIL 13, 2010 Cincinnati tomorrow - We leave for Cincinnati early tomorrow morning. Chloe's cataract surgery is scheduled for 9amET. Please keep her in your thoughts and prayers. TUESDAY, APRIL 20, 2010 EYE - Surgery went well last week. We go back tomorrow for a check-up. I've been giving Chloe two different eye drops four times a day. One to prevent infection and one to reduce pressure in her eye. I fancied myself a talented eye dropper the first three days. I got Chloe to open her eyes nice and wide by waving musical toys above her head and quickly snuck the drops in before she even knew what was happening. No longer am I smarter than the baby. She caught on to me. At least I went three days without having to pry her eye open. It's not as bad as I feared, though. Chloe's fairly tolerant of me and puts up with a lot of crap - even gives me a smile here and there... She seems to be doing fine and her eye looks good. I can still see where they cut on her eyeball and that's kind of freaky but they gave us a hard shield-type eye patch to keep over her eye as protection. Unfortunately, she's really really good at grabbing and ripping it off so she's been swaddled and/or mittenized all week. Even then I've stepped away only to retun and find her eye patch off and both hands vigorously rubbing at her eye on a couple of ocassions. Little stinker. MILK - After consulting four different lactation consultants and several webites and lay persons I've come to the conclusion that high lipase milk isn't all THAT uncommon. There's no study proving that the frozen stuff is safe for babies but everyone agrees that it probably is. So I'm still giving it to Chloe - at the rate of two bottles per day. She's still taking it fine and doesn't seem to be having any side effects. Fingers crossed that she continues to take it! I'm happy with my three to four pumpings per day schedule and my production is holding steady at a respectable, if not impressive, 15-18oz per day. If I can keep that up and supplement with 2 bottles from the deep freezer I'm golden for the next few months.
21: BLOG - On a side note, I'm seriously considering stopping the blog. As I've mentioned many times, writing is not my talent (although I'm not sure what my talent is.. ;-) and I just don't have time for it these days. It's almost midnight now and I'm only staying up in order to write this. Seriously, though, it takes like an hour to write one entry. And if I proof-read it three times to make it a smooth read then maybe an hour and a half. And now that Chloe's out of the hospital I really don't have all that much to report on a daily basis. I really love the idea of documenting important and fun family information, though. It seems like a great tool for when I finally start scrap-booking again. Plus, we live away from our family and it's a great way to keep my mom, sister, and SIL up-to-date on our goings on. I'm thinking of just starting a family blog for those two purposes but haven't decided for sure. Anyway, I wanted to mention this because I know that some kind souls out there have been following and praying for Chloe since she was born and feel a sense of...I don't know...obligation. (It somehow seems like it would be rude to just stop...) Decisions to come. In the meantime I give thanks for all the support, prayers, and friends I've received through blogging. It's been tremendous. MONDAY, MAY 3, 2010 She's ba-ack! This past week and a half has been rough. Chloe was not herself for a good ten days. All she wanted to do was sleep. And when she wasn't sleeping she wanted to lay in my arms with her eyes closed. The weird thing was that she didn't show any other signs of being sick. She was eating, peeing, pooping, no fever. Nothing. I just kept telling myself she's growing and healing from surgery. Yesterday she finally snapped out of it. She's back! Smiling, interacting, playing, you name it. What a relief! She even has a couple of new tricks. She likes to hold her feet and she laughed and giggled when I was playing with her yesterday. Solana, Dave and I were freaking out! Such fun... We went to Cincinatti for a surgery follow-up on Wednesday (almost two weeks ago) and her eyes looked good. Yeah! The doctor wanted us to keep Chloe on some pressure relieving drops (Pred Forte) and come back after two weeks. I wanted to start the contact lens process but the doctor said, "not yet." Two days later Chloe's top and bottom eye lids swelled up. After a very frustrating series of phone calls and being put off by the doctor in Cincinatti, who said her eye was fine two days ago, and her pediatrician I finally got a local opthamologist to see Chloe. Note: I'm dumping her original opthomologist because of his inability to communicate with me and asked the new one to see her. Boy was I glad I did that! This new Optho is AWESOME! He's been her doctor for a whole week and he's already called me on the phone four times! This is a BIG deal! I never get to talk to other eye doctors - only their techs and nurses. This guy takes the time to really get involved in his patient's cases. I like that. The only annoying thing is that I learned HE could have done Chloe's surgery here in Dayton. The old Dr. that I dumped obviously didn't want to refer me to him because he knew he'd lose a patient. That Dr referred us to Cinci implying that she couldn't have the surgery in Dayton because of her small size. Grrrr. The great news was that her sollen eyelids were a perfectly normal post-surgery symptom. Awesome Doctor is very anxious to get a contact into Chloe's eye - as am I. (Reminder: her brain is still developing connections to her eyes. Without vision in that eye her brain may decided it's not worth the effort to connect to it - leading to lazy eye.) Had he done the surgery a contact lens would be in place by now. Unfortunately, we're stuck with Cinci Doctor for at least a couple more days. Awesome Dr. did comfort me, though: if he thought the extra days without a lens would have a detrimental effect on Chloe's vision in the long run he would certainly take over her case without a release from her surgeon. Lesson learned. If you're unhappy with your doctor. Check out others. There is probably one out there who's a better fit for you. And don't assume the referral given is your best/only option. In other Hendrickson news: Solana turned 5 on Tuesday the 27th. She had a butterfly party and was soooo cute! I'm loving my new combination of SleepyWrap and B tank. I can carry Chloe in the SleepyWrap and put her new little oxygen tank in a little backpack and Voila! We're mobile! You may wonder what happened with the whole, "Chloe-can-come-off-oxygen-Hip-Hip-Hooray!" thing... Well, nothing has changed. As anxious as I was to disconnect Chloe from her little leash I decided to wait until after surgery - no reason to push her while she's healing. She could probably be off oxygen by now. I'm actually the one holding her back. I'm just so scared to do it! It'll happen soon enough, though. I'm sure of it. I've started taking her off for meals. Baby steps. WEDNESDAY, MAY 5, 2010 Isn't my fabtastic wordsmith-ing enough for you girls? Do you really need pictures? I would think my descriptive writing paints enough of a visual image for you... Hehehe. I'll post pictures tomorrow. We have a long day ahead of us today. Cincinnati this morning (we want a release from that Dr!) and hopefully opthamologist this afternoon for a contact lens. Wish us luck! P.S. I decided I'm too narcissistic to quit the blog. Plus, my mom and SIL guilted me into continuing ;-)
22: FRIDAY, MAY 7, 2010 Solana's Birthday Solana turned 5 in April. She chose a butterfly theme for her party. I only took a few pictures since I was running around like crazy during the party and they were all crappy. Most of these were taken by Angela, whose two butterflies joined the party, as well. | We turned the four seasons room into a party room.I made the cake. It was totally easy (parenting.com) but I'm still proud of it. :-) | The girls decorated their own wings and had their faces painted to look like butterflies. Happy birthday to my sweet 5 year-old. | We had a scavenger hunt. The clues were photographs hidden in various pieces of furniture. The photograph showed the next piece of furniture they needed to search. They ran screaming back and forth through the house going from one clue to the next. They loved it and found their goodie bags at the end. The only rule was that they couldn't scream near the master bdrm, where my friend, Kim, was rocking Chloe to sleep :-) | Swarming the pinata candy. I didn't know butterflies swarmed...?.After a long day of partying! Turns out Solana's friend next door is only 4 days older than Solana. Their parties were on the same day so they went from Solana's party straight to hers. Whew! | Her actual birthday was on Tuesday. She woke up to birthday pancakes. I stole this idea from a friend on facebook and just added pink food coloring - think it might become a tradition.
23: SUNDAY, MAY 9, 2010 Contact Lens Chloe got her contact lens yesterday morning! She wore it all day and I swear I can tell that she sees better. I'm so excited for her to finally have vision in her left eye! It's kind of difficult to get it in and out (she screams and kicks and squeezes her eyes shut) but it's sooooo worth it! She was happy and smiley all day long. I'm still giving Chloe two drops a day of her post-surgery eye drops. Next week she'll be down to one drop per day. The contact has to come in and out every day while she's on the drops. But once we completely wean her off the eye drops I can leave the contact in for five days. Update 1: I wrote this post Thursday. It's now Friday and I put Chloe's contact in this morning. She didn't even make a sound. Such a trooper! I love her! Update 2: It's now Monday and I still haven't published this post. I'm soooo lame! Chloe's doing great with the contact except that she popped it out twice today while I was making dinner. Fortunately, she was in her swing and I found the contact stuck to her cheek both times. At $250 a pop I don't really want to lose these things!!! MONDAY, MAY 10, 2010 Chloe Update Chloe's really "coming together" these days! She got her contact last week and this weekend we finally turned off her oxygen during the day. She's doing great without it, too. She still gets oxygen at night. I don't think she actually needs it but she'll need to have a test/study done before the pulmonalogist will take her off at night. I certainly don't mind waiting on that! It's nice to have that peace of mind (oxygen on and sats monitor on) during the night. We had a visit from the physical therapist today. I'm still trying to figure out all the specialists that come to our house. We have a Help Me Grow lady who's like the big umbrella overseeing Chloe's developmental assistance program. Then we have the Early Intervention lady who visits with the OT and PT. The Physical Therapist makes sure Chloe's developing her core, head, and leg strength (I think). She looks for skills like sitting up, rolling over, holding her head up during tummy time, etc. The Occupational Therapist will look at Chloe's hands (ability to grasp) and, I believe, mouth (ability to make sounds and chew). I'm still working this out. There are so many people with different areas of expertise. Anyway, the PT came by today and said that Chloe's pretty close to doing what a 5 month-old (that's Chloe's adjusted age) should be doing. She's holding her head up at almost 90degrees and starting to push up with her arms. She follows toys with her eyes and grasps at them. She can roll over with assistance but she wants us to work on that some more. We also need to work on sitting up with assistance. Overall, I had a good feeling after the meeting and learned some new techniques for helping Chloe learn to sit and roll over. These pictures were taken on Thursday. I wanted to get pictures of her wearing her contact and also show off her new skill - grabbing her toes. She was laughing at me because ever time I clicked the camera she'd let go of her toes. | Solana was snapping pictures the other day while I was changing Chloe's diaper. I don't know why I love this picture - something about her eyes...
24: WEDNESDAY, MAY 12, 2010 Solana and Leila Solana's had Leila on the brain a lot lately. My facebook friends might remember this conversation from a couple of weeks ago. It was the afternoon after Solana's birthday party. She and I were snuggled up on the couch watching TV. She reached over and patted my stomach and said: "Mommy, your belly is big." Then gave an excited gasp. "Maybe Leila came back!!" Me: "Oh Sweetie Pie. That would be wonderful. But it doesn't work that way. People don't come back after they've gone to heaven. And by the way, my belly is NOT big." We had a little tickle war argument about whether my belly as big or not. I won. I didn't need to say anything else. She accepted that and went back to watching her show. What amazed me was how she had worked that out. Solana had been very very excited about having twin sisters. We lost Leila when I was 23 weeks. We'd all felt her kick and she was a very real part of our family. Solana took the news hard. We told her that Leila joined the angels in Heaven and went to be with God. Solana doesn't understand the difference between body and soul. After that she thought I had only one baby in my belly. If Leila came back she would obviously return to my belly. Obvously. Kids are so amazing! Solana loves to play pretend. We often "play family." I usually get to be the Mom. Dave is the Dad. Solana gets to be the baby, the dog, or some other character. Chloe doesn't usually play. But last night Solana wanted to be "Chloe." And you'll never guess who Chloe got to play. That's right. Chloe got to be "Leila." I couldn't very well say "no" so I went along with it. Having Solana call Chloe "Leila" was a bit disconcerting, though. I keep Leila's last ultrasound pictures in my jewelery drawer and sometimes stop to look at them and cry a little. Or I dwell as I walk past her urn in our room and feel a bit sad sometimes. But I honestly don't look at Chloe and feel loss or sadness about Leila. I can't. Chloe is such a miracle and all I feel is gratitude and joy when I look at her (I think her struggle after birth and 5 months in the NICU might have had something to do with that). But this time was different. Hearing Solana call her "Leila" over and over.... Well, let's just say I wasn't the most interactive play-date yesterday. I kept staring at Chloe and thinking...Leila. Leila? Leila. What would you look like? How would you look different from Chloe? It was weird. But I digress. I'm curious about Solana. She likes to tell people that she has a sister in heaven and includes Leila as part of our family but we don't really talk about Leila too much. I feel like she coped with the loss of her sister in a healthy way. But should I prompt a conversation with Solana about this renewed interest in Leila or just let her bring up her sister as she will? And what would I say if I started a conversation? | Doesn't she look super chubby here? | She cracks up when I kiss her neck! I love it!
25: THURSDAY, MAY 13, 2010 Gross Lady - We just had our first unwelcome (attempted) touch. Solana, Chloe, and I were leaving the hospital after Chloe's eye exam when I decided to stop at the bathroom to change her diaper. I was carrying Chloe and Solana was pushing the stroller. A lady followed us in and I was on high alert as she looked at Chloe. She said, "How cute" and simultaneously reached for Chloe's exposed hand. I did my best Ninja imitation and swiveled away causing her to barely miss Chloe's hand. Her hand dropped - rejected. I tried to act like I was going for a paper towel but it was totally obvious I didn't want her to touch Chloe. The lady used the toilet and then, as I was still changing Chloe, scurried out of the bathroom WITHOUT WASHING HER HANDS!!!! I felt soooo justified in my earlier rudeness! I explained what just happened to Solana and she was thoroughly appalled. "Gross! That lady has bad manners!" That's right, Solana. THURSDAY, MAY 20, 2010 Solana's Dream - I woke up at 3am and heard Solana sobbing from her bedroom. I jumped up and ran over. I thought she was asleep and crying so I just started rubbing her back and stroking her hair and face. She was awake, though. Through her sobs she told me that she had a bad dream. Chloe fell off a cliff and went to heaven. I was floored. Little kids have dreams about dieing? All I could do was comfort her and hug her. I told her Chloe is just fine and sleeping in my room and it was only a dream. She calmed down and was able to go back to sleep. I worried about her the next morning, though. Fortunately, I have Leticia. I called her and asked what to do. She suggested that I help Solana make up an alternate (happy) ending to her dream and that might make her feel better. When Solana woke up I asked her if she remembered me coming into her room. She did but said her dream was too sad to talk about. "How do you know your dream was sad" I asked. "Did you see what happened after Chloe fell off the cliff?" I knew I was walking on thin ice here. If she gave the wrong answer I was kind of hard pressed to pursue Leticia's idea. "Well, no. The dream was too sad when she fell so I ended it and woke up and just...started crying." Thank you God! "Well, maybe something good happened after you stopped your dream...? I think maybe she landed on a puffy cloud that carried her to the hospital and everyone at the hospital knows Chloe so they called us right away to come and get her." Solana said that Chloe WAS in her little bouncy chair. She got into it and decided that Chloe and her chair fell onto our car as we were driving by. (not sure why we were driving by as Chloe sat in her chair on top of a cliff but I didn't dwell on details...)We felt a bump and stopped to check it out. Voila! Chloe on top of our car safe and sound! WHEW! Solana felt oh so much better after that. In fact, she was cheering at her happy ending. I feel so much better after that. THANK...YOU...LETICIA... Chloe Update - Chloe had her developmental clinic yesterday. I was annoyed for a number of reasons when I got there and felt like we were wasting our time seeing yet another physician to assess Chloe's development. In the end I was satisfied. The State program called, Help Me Grow, already sends a Physical and an Occupational Therapist to our house and we have an Early Intervention Specialist involved with Chloe. This physician had a little bit of a different perspective on the same thing. I guess we'll continue to follow-up with her. Doesn't hurt too much to have somone else on her case. Plus, she only wants to see Chloe twice a year. We can skip cold and flu season so as not to expose Chloe more than necessary. She was pleased with what she saw and puts Chloe at about three months developmentally. She's not concerned, though, and thinks Chloe will catch up soon enough. She had a lot to overcome at the beginning and her recent vision issues and surgery probably put her behind further. Nothing that she shouldn't overcome. The PT and OT both put Chloe in the 5-6 month range for most areas. I'm not surprised at the discrepancy and it's not all that important to me. I'm definitely seeing her improve every day and expect more now that she has vision in her left eye. Speaking of vision...the little squirt popped out her contact AGAIN last night. We've now lost it three times. Found it twice after extensive searching - once on her back and once on the floor almost under the bed. The third time was the charm. It's gone. We went this morning to get another one. We're getting better, though. I'm putting rewetting drops in her eye all the time and I think that helps keep them in. Unfortunately, these lenses are our only option right now. The vision center is working to get a different type of lens - gas permeable, I think. Those should be a tad less expensive and better for Chloe's eye. They should have them in 3 months or so. Chloe's doing great. She's so sweet and usually happy these days. No more constant crying fits like she had when we first brought her home. She's getting stronger, more talented, and beautiful every day. We're in love. It's a gorgeous day outside! Can you tell?
26: SUNDAY, MAY 23, 2010 9 months old! Chloe's 9 months old today! I can hardly believe it... | SATURDAY, MAY 29, 2010 Things are really Calming Down There isn't too much going on at the Hendrickson house lately. It seems like Chloe's medical concerns have sort of plateaued for the time being. We only had one doctor's appointment last week and that was her 9 month check-up. It felt like such a normal week! Freaky! Her new contact has stayed in place for a week and a half. Yeah! I only have to take it out once every four nights and Chloe doesn't mind the in and out so bad since I don't do it very often. We go to the Optho on Wednesday so they can test her vision. I'm curious to know what they'll say... She has accompanied Solana and me to a few stores and even Solana's end of the year picnic for Pre-School. (My sweet girl is going into Kindergarten. Sniff Sniff.) We go a little crazy with the antibacterial wipes during outings and I only had to offend one mother at the picnic who decided to hold Chloe's hand without asking (I actually felt kind of bad about saying something. I tried to be really nice about it but just couldn't hold my tongue...) Chloe now rolls over every time she's placed on her belly. This is a great success - something we've been working on for months. It's her new cool trick and we love watching her perform it. She'll do it over and over and looks so proud of herself when she lands on her back. The only downside is that I count on tummy time to be "off the back of her head" time. I think most kids her age are sitting readily but Chloe's always laying on her back (unless I'm holding her, of course, and I do that A LOT). The back of her head's a tad bit flat, though. I asked the Ped yesterday and she said it's not bad and not to worry. I suppose I won't worry but I still try to keep her off her back as much as possible. Leticia sent us a Bumbo. I was excited to use it - not so much as sitting practice (it doesn't really work those muscles) but at least as a way to get her in the sitting position and off her back. Our little turkey will have no part of it, though. She arches her back and throws herself back in order to get out of it. She's strong! We're working on sitting exercises every day, though. She'll get it eventually. In the meantime I'll be working on getting over my obsession with the back of her head. Her hair will cover it eventually, right? :-) We've been spending a lot of time at home. Dave has plenty of work to do in our yard. We bought a house on an acre lot and it's all yard. This is three times the lot we had in Colorado and we love it! We have lots of mature trees and it's like a private park/getaway in our own backyard - which is nice since we spend most of our time at home. I have a vegetable garden going with tomatoes, zucchini, garlic, onions, brussel sprouts, cucumber, potatoes, kale, spinach, lettuce, pumpkins, watermelon, and herbs. I just set up my new compost heap today - kind of bummed that I didn't have any compost to work into my garden for this year but if I can get it hot enough I should have some ready to work in this summer. This will help my veggies grow better and tastier! We also set up a bird feeder in the back yard. I have a perfect view from where I sit and feed Chloe. So far we've identified 11 species of birds at our feeder. Plus squirrels, who love our birdseed. I started throwing peanuts our for the squirrels to lure them away from the bird feeder. They haven't gone for the peanuts but the chipmunks under our deck have. Let me tell you something: Chipmunks are just about the cutest creatures I've ever seen. If you've ever considered bird watching I highly recommend it. You just may get a surprise! Our book is called Birds of Ohio Field Guide, by Stan Tekiela. It's organized by color so you can easily look up the bird you've seen. We've had so much fun. And Solana totally gets into it, too. Once we learn a bird she squeals to tell us when it's back and she loves flipping through the book to find a bird she sees on the feeder. That's about our lives in a nutshell. We've had friends over a couple of times so we do manage to socialize a bit. Dave's setting up our old tent and is having a campout with Solana tomorrow. The neighbors are even coming over for hot dogs and s'mores. We're very excited about the s'mores :-)
27: Lipase Milk Solution? Fingers Crossed! I've been feeding Chloe frozen milk for a while now. And ever since I noticed the bad taste I started giving her the most recent stuff (the milk I pumped and froze in March). I threw out all of my September milk. We're down to early February and I noticed she's starting to turn her nose up at it. That leaves October through January in the freezer. I can't bear the thought of throwing that all out. Nor do I want to pump more than my current three pumpings a day and I'm not ready to go to straight formula. I called Chloe's nutritionist to ask if I could put agave syrup or some other flavoring in her milk to make the frozen stuff taste sweet just like the fresh stuff. She suggested baby food like banana. GENIUS! That hadn't occurred to me! Chloe's adjusted age is 5 1/2 months. Babies can start eating baby food at 4 months (it used to be 6 months when Solana was a baby) so Chloe's totally old enough. I pureed some banana last night and added it to a frozen milk bottle. She sucked it down! I didn't puree it quite enough and kept getting little pieces stuck in the nipple so I'll do a better job next time but I'm super excited that she took the bottle. I had been mixing half fresh and half frozen in order to cut the taste but this one was full on frozen and she didn't mind at all. I'm sooooo excited. I may not have to throw out my milk after all! I've been pumping for 9 months now. I'd like to stop when Chloe turns 1. If I can count on using frozen milk after that I can quit pumping in three months and still have enough milk to get her through one year adjusted. :-D SATURDAY, MAY 29, 2010 Random Pictures Solana loves our Schwan's guy (probably because he delivers ice cream). Here she is waiting to assist. | Chloe AND Solana eagerly await Daddy's return from work every day. | Slip N slide with Angela's girls, Ari and Kylie. | My and my favorite famous friend and photographer, Angela. | Chipmunk on our deck. Cardinal. They have a nest right outside Solana's window. Blue Jays love peanuts. | Solana's AWESOME teachers - Mrs Minham & Mrs Thimmons. | My big girl graduated Pre-K!
28: FRIDAY, JUNE 11, 2010 Phonics, Vision Results, New Crib Things are pretty calm in the Hendrickson household these days. Solana's been out of school for a week. I'm enjoying the 80 minutes of driving per day that I don't have to spend dropping her off/picking her up. We've started Hooked On Phonics, per the suggestion of the librarian, and she loves her new powers of reading. We're moving very slowly so as not to overwhelm or stress her out - I want it to stay fun. So far she's reading all kinds of words with 'a' in the middle: cat, hat sad, pat, had, bad, dad, man, pan, etc. We move to 'i' words today. Solana has always been crazy about books. We read to her every day and she memorizes long passages out of books for fun. We go to the library and she wanders through the aisles picking out books that look interesting to her - I love it that she feels so comfortable at the library. She's never shown the slightest interest in learning to read, though, until we got this pack from the library. Is it premature to say, "Hooked on Phonics worked for Us...?" (I'm just dying to say that!) | Chloe saw the opthamologist last week and they tested her vision. I expected some kind of machine that looked into her eye and gave a measurement but instead they did a somewhat more subjective test. The technician held up large cards in front of Chloe. Each card had a picture of a square. The square was striped. The first one had very thick stripes - maybe four stripes made up the entire square. And on each card the stripes got progressively thinner so that the last square had such small stripes it almost looked like a gray square instead of a black and white striped square. The technician held up the cards one at a time to see if they caught Chloe's attention. If it obviously caught her eye she would move on to the next card. Once Chloe stopped looking she decided that Chloe couldn't see it and used that as her "measurement" for Chloe's vision. So, as you can imagine - plenty of room for inconsistant results. Here's what they determined: Right eye: 20/260 (vision of a 5 month-old) Left eye: 20/470 (vision of a 3 month-old) Seeing her vision in number form was a bit startling to me. I've also started noticing that her eyes aren't moving exactly together and that makes me a tad bit nervous. I know there's some vanity speaking there but I'm not sure what that says about her vision. I'd kind of sidestepped myself over toward the idea of imperfect but correctable vision for Chloe. Nobody's told me otherwise so it's easy for me to hope for (and eventually expect) the best possible outcome. My optimism is somewhat blinding sometimes. We're still patching her right eye for four hours a day. The hope is that we're forcing her left eye to work and also forcing her brain to develop that eye. Fingers crossed that it's working. | She also saw that physical therapist yesterday. I've been working with Chloe on sitting. She doesn't care for it and throws herself back after just a few seconds. I was kind of worried about what they physical therapist would say because I didn't think she'd made any progress since our last visit. I guess she's been making tiny improvements every day that I hadn't noticed, though, because the PT said that Chloe's definitely tolerating it better than she did on her last visit. We'll just keep working. I'll get this child off the back of her head eventually! Speaking of the back of her head... I know I said I'd stop obsessing. I didn't. I've actually started sleeping Chloe on her belly (cringe). I know! I know! I spent 5 months visiting the NICU and their "back to sleep" campaign is serious. But here's my justification: 1. Chloe's old enough to lift her head and roll over. 2. Chloe sleeps with a pulse-ox monitor. If she ever managed to smash her face into her (firm) mattress and miss any breaths then her blood-oxygen level would drop below 90 and her pulse-ox machine would yell at me. Her crib is next to my side of the bed, as is the monitor, so I would immediately wake and fix her. Plus, she still sleeps with oxygen. I expect her to be sitting by the time she's off her nighttime oxygen and pulse-ox so back sleeping won't be an issue. All right. If you're freaking out about this I'm open to comments. And as passionate as they are about Back to Sleep at the hospital I expect to hear at least one impassioned comment so let me have it. | And last but not least, Chloe got a new bed! We converted Solana's big-girl bed back to a crib when Chloe came home (Solana got a cool bunk bed in exchange) and put the crib in Chloe's room. I'm not exactly sure why we did that, though, because Chloe's been sleeping in the pack n play bassinet ever since we brought her home. We finally decided that she's getting too big (12 lbs) for the quality of mattress in the bassinet. The problem was that we're not ready to move her out of our room. So we bought her a super cool mini-crib! I'd never head of mini cribs but Dave did a bunch of research on cribs when we were expecting twins. The mini cribs were our solution since they don't take up as much room as full-sized cribs. We never bought them but he remembered the mini crib when we were trying to decide what to do about Chloe's sleeping situation. The mini is perfect because it takes up the same amount of space (even less, actually) as the pack n play in our bedroom and she can stay next to the bed! Solana left our bedroom at 6 weeks. Needless to say, Chloe will be there well into her first year :-P
29: Dave and I celebrated our 6th anniversary with a dinner out and comedy club. Angela babysat for us and, once Dave dragged me out the door, we had a really nice time! | TUESDAY, JUNE 15, 2010 Chloe's First Baby Food They used to recommend solids at age 6 months. That was way back when Solana was a baby. Did you know that they've upped it to 4-6 months? Seems so young to me! Anyway, Chloe is 6 months adjusted (and almost 10 months since birth) so we've been talking about it. We notice her mouth going crazy any time we eat good smelling foods around her, especially chocolate and popcorn. I've stopped eating those near her because I feel so bad! Her little tongue sticks out and moves all around and drool just starts pouring down her chin. That's probably not a sign at all that she's ready for food but it sure got us thinking about it! One of my concerns was the fact that she's not sitting up, yet. But after chatting with my neighbor (who has an 8 month-old) I decided to borrow their baby recliner because it sits up a little more than Chloe's Baby Papasan. Then came the question about what to feed her. I decided on...get this...Prunes. A bit unconventional for a first food. I know. But Chloe tends to get stopped up - probably because of her super caloric breast milk/Neosure concoction so I've been giving her prune juice pretty much since we brought her home. Then I started using prune baby food to counteract the banana that I used in her frozen milk. I know that she can digest it and there's no allergy issue. Anyway, here's a little photo story board of her first eating experience: | "I'm in a new chair and in a different spot...patiently waiting to see what's going to happen." | "Hmmm. What's this?" | Tried and true method for exploring new things. "I'll just lick it to find out." | "I think I like it but I need to think about it a bit more. Maybe if I move my tongue all around that will tell me something." | Sissy's turn! (Solana was about to crawl out of her skin with impatience. She couldn't wait to feed her baby sister!) | "Yes, I oficially like this. Now please gimme dat!" | "Aaaahhhmmm gettin' the hang of this..." | A. Big. Success. | Now I don't want to feed her prunes every day so I need to switch to something less...um...effective. Rice cereal stopped up Solana so I'm nervous about that. Oatmeal, maybe? Suggestions?
30: I love looking into my girls' eyes... | TUESDAY, JUNE 22, 2010 Watermelon Peer Pressure Dave bought a watermelon and cut it up. We've offered it to Solana a few times before and, being a kid who grew up chowing down on watermelon, it baffles me that she's not crazy about it. After a long afternoon of playing outside in the heat Solana decided she wanted a snack. I offered up some watermelon and this is what happened: Me: Why don't you have some watermelon? (Taking a bite) Mmmm. It's sweet and delicious! Solana: No thank you. Me: Solana, all little kids loooove cold and juicy watermelon after playing outside in the hot sun. Solana: Not this little kid! Oops! Did I just attempt peer pressure on my daughter? My bad! Heehee! I can only hope she shows such strength against peer pressure when she gets older. FRIDAY, JUNE 25, 2010 My GIANT Baby If you are my Facebook friend you may have seen my status update mentioning the fact that one of my friends called Chloe, "GIANT!" Never in a million years would I have imagined a situation where I would consider someone calling my daughter a "GIANT" to be a compliment but here I am. She said it. I was completely happy to hear it. People have been telling me a lot lately how big Chloe is and, to tell the truth, I just figured they were being nice. Come to think of it, people don't even flinch when I tell them she's 10 months old. Chloe's still tiny in my eyes. But I mentioned this to Dave and we got talking. Maybe she's getting a lot bigger and we just aren't noticing it because we see and hold her every single day....it's a thought. She hasn't been weighed in about a month so we don't have that constant weight report that we used to. Chloe's little bathtub has a hammock attachment for newborns that I've been using. The morning after our conversation I decided to take the hammock out. One side of the tub has a reclined seat for babies who aren't sitting yet and the other side has a straight seat for sitters. I put her in the reclined seat and...Holy Moley! She's TOTALLY big enough for this! I can't believe I still had her in the hammock! Then Dave set her in the exersaucer and whatdoyaknow - she fit - and loved it! So yesterday I weighed myself and then myself+Chloe on the bathroom scale. According to that, she's 13.2 pounds. Yes! I decided to take all the 0-3 month clothes out of circulation. They all say "up to 12 pounds" after all. I put them in the plastic storage bin and noticed Chloe's preemie stuff that was already in there. I got an idea - a little experiment. Here's the outcome. These pictures will blow your mind. Dave's eyeballs popped out of his head Jim Carey style when he saw the one of Solana carrying her.
31: Here Chloe is modeling her round belly next to one of the preemie outfits she wore her first month at home. (Hmmm) | I tried to put it on her... (Wow) | I tried to close the snap... (Hahahaha) | Then Solana asked if she could hold Chloe. (YOWZA!) Doesn't Chloe look humongous?!? I promise this picture is not digitally enhanced. | After our second visit to the pulmonologist I noticed the doctor typed "Good Job Mom!" in the post visit instruction notes. And I must admit that, although her weight gain isn't actually a result of my effort, I liked it :-) But Chloe's weight gain the month after that visit was less impressive (that was the month she had her cataract surgery). I have tracked every single mL Chloe has eaten since January in a little log book and take note if she takes less in a day than I expect. Perhaps I don't need to obsess so much. I believe she's picked up the pace again. There just may be a gold star in my future, after all...
32: Wednesday, June 30, 2010 Rollin' Rollin' Rollin' Chloe did the most amazing thing today! She rolled! I'm not talking the simple roll from her belly to her back. She's a pro at that now (and displays this skill every time I attempt tummy-time). I'm talking the fabtastic roll-across-the-room roll! My baby is MOBILE! (I cheer now...hehe.) For the past two weeks I have been dutifully practicing rolling with Chloe - turning her hips and encouraging her to continue rolls in one direction - showing her how to position her arms so they don't get stuck underneath her. We practiced every day and she didn't seem to mind but also didn't seem to be paying too much attention to my lectures and demonstrations. Then I got home from the pool with Solana this afternoon and Dave said, "Wow. Chloe's really rolling all over the place now, isn't she?" Seriously? I swear I just read this on someone else's blog. Mom works every day with child but child never performs. Mom leaves the room for one moment and child puts on a three ring circus act for Dad. Hahaha! I would be annoyed except I'm sooooo excited that she's doing it! And she's pretty excited about it, too. She kept doing it over and over and over! Unfortunately, I can't seem to load a video onto Blogger....not sure why. But if you want to see the video I think you can see it from this link. http://www.facebook.com/video/video.php?v=412120715840&saved If not, add me as a Facebook friend. I'm happy to add blog friends :-) (Cynthia Hendrickson) We just saw the opthamologist yesterday and he was happy to see Chloe tracking with her left eye. She definitely has vision in that left eye. It's apparent, though, that she favoring her right eye. We're still putting a patch over her right eye four hours a day and hoping for the best. I told Dave I should do a post demonstrating my ingenuity in patching - my patching tutorial for those who may need it. The doctor was pretty excited that Chloe keeps her patch on. We had a really hard time getting it to stay the first few weeks but I played with the patch and started strategically cutting slits in them to make them stay on better. Ever since then the patch stays on for a 5-hour stretch (4 awake hours) easy peasy lemon squeazy! The doctor also noticed her left eye crossing in a bit. She might need surgery to correct those muscles and straighten the eye but it sounded cosmetic to me. For some reason, I didn't want to get into that too much just yet. All I can do right now is patch consistently so I'm going to do that. They'll do a thorough exam of her eye under anesthesia some time after she turns one. (Planning ahead isn't my number one virtue - just ask my hubby and he'll tell you about how I say "bye" about 5 times every time I go somewhere!) Oh, and her contact is staying in ok. We've found it on the couch twice this week - always contact drama. But I'm sure you're bored of hearing those stories over and over *wink* Time for bed. I need to reserve some energy for my jog tomorrow morning followed by baby chasing! Friday, July 9, 2010 A Little More Oxygen We went to the retinologist on Wednesday. This is the doctor in Cincinnati who did Chloe's cataract surgery, but who's also checking Chloe's retinas to make sure the ROP isn't continuing to do any damage to her eyes. The good news is that she looks great! He isn't seeing any further damage. Yay! Last week we saw my favorite doctor, Chloe's pulmonalogist. I had my plan in place. Her appointment was at 2:20 but her feeding time is 2pm. It takes 30 minutes to get to the hospital, so it would be too early to feed Chloe before leaving home. I decided to arrive at her appointment 30 minutes early and feed her there. The added bonus would be that she would have a full belly for her weigh in. Hee hee hee. I was determined to get that gold star... My mistake was that I checked in before sitting down. I hardly pulled the bottle out of the diaper bag before they called her name! Dratz! My evil plan was foiled again!!! Dr. Sobande did his usual grams/day calculation and determined that at 13lb 7oz Chloe only gained 18g per day over the past three months. It's not bad but not as good as the last time he saw her. I reminded him that there was a cataract surgery, healing, a cold or two, etc etc in there. It HAS been three months, you know. He agreed and reminded me that it's not "bad" weight gain - just not "great." Then I dropped the bomb. "Soooo, I thought I should mention that, during the last couple of weeks, Chloe has dozed off toward the end of her bottles a few times a day. Plus, she breathes quickly when doing something strenuous - like having a fit or playing hard." I held my breath as his eyebrows went up. He thanked me for telling him because many people wouldn't tell him that. The truth is that I knew I had to tell him but didn't WANT to. How did he know that?!? The outcome is that Chloe's back on oxygen for feedings. And we're raising her O2 from 1/8 or a liter to 1/4 or a liter. No, he said, this will not slow her lung growth or development. Her lungs are still working hard. We're just giving her a little more help. Her body will burn fewer calories trying to keep her whole body oxygenated. All right. I can wrestle her canula on a few times a day. This is not a big deal. I also noted that she spits up frequently. It's only about 2Tbsp per bottle but it's pretty consistent. We have a super hard time getting a burp out of her. I'll pat her back for like 10 minutes and nothing. Different burping positions. Nothing. 5-10 minutes later - spitup. He prescribed Zantac. I'm not sure why, but I'm scared to give it to her. I've had it for two days now and have yet to start. The weird thing is that she hasn't been spitting up like she usually does. I wonder if the added oxygen could have anything to do with it? I asked if he thought the spitup could have anything to do with her lungs. I assumed it was just a tiny bit of reflux. He agreed. I think I'll hold off on the Zantac for now, though. I hate to give her anything she doesn't really really need. Wednesday, July 14, 2010 That Time Of Year This post isn't the usual Chloe post. It's more about me and it's probably not going to be super upbeat....just to warn you. I've followed a few micro-preemie/single-survivor-twin blogs since Chloe was born. They've been SUCH a blessing! I was armed with
33: knowledge during Chloe's NICU stay and knew the right questions to ask and expected some things that would have otherwise surprised me. Of course, there were still plenty of shockers and plenty of times when this non-medical mom struggled to grasp exactly what was going on with Chloe's little body. And it didn't end in the NICU. There are still plenty of struggles that Chloe shares with her little buddies. I eagerly read my friends' blogs to learn new tips and techniques and understand struggles that may (or may not) be forthcoming for Chloe. So with all this experience to guide me I knew what was coming for me. I knew this time of the year would be difficult. But I had time to prepare myself. I was rocking Chloe the first time I started traveling back to last year. And it occurred to me that my pregnancy planner was somewhere in my room or Chloe's room. (This book had a weekly planner where I kept doctor's appointments and noted any and all important information. At the beginning of the pregnancy I marked the pregnancy test date, my weight and measurements, exercise routine, diet/cravings, pregnancy symptoms, etc. Then I marked the date we found out we were having twins!, TTTS diagnosis, bedrest, Girls!, laser surgery, Leila's blood transfusion, Leila's passing.) I decided that day, sitting in the glider with Chloe snoozing in my arms, that I would NOT look for the planner. Knowing exactly what was going on last year would just be too much for me. Then I had a little conversation with Leila about how much I love her and that she should know just how much I miss her even if I don't fall into despair reminiscing last year. I'm certain I cried more during the last two months of pregnancy than the whole rest of my life combined. Those two months were pretty much a constant flow of fear, surgery, more fear, more surgery, loss, and sorrow. Even the happy memories, like kicks and ultrasounds, bring tears. So, what happened after I made the decision to avoid the planner? I've done pretty well, I must say. I think about the planner about once a day and force the thought aside. It's easier since the only date I remember for sure is Leila's angel day. I could probably calculate the other dates but it's easy to not do that. Thank God I haven't run across that planner! I cry periodically, yes, but that's usually brief. Last night was my first really big cry. I came across some ultrasound pictures while cleaning out Chloe's room and decided to put Leila's pictures in her memory box. I can't ever touch her memory box without opening it up and looking at the photographs we took of her or touching her little blanket and outfits that she wore in the hospital. Fortunately, the girls were asleep and Dave was home. He gives really good hugs and his heart beats loudly so I just snuggled in his chest for a while and that felt lovely. Oooh. I know I can make it through the next month and a half without falling to pieces. I'm doing SO well! If you're so inclined please feel free to send some good energy my way. I just might find a good use for it. Wednesday, July 14, 2010 Chloe Giggling. It's easy to keep my spirits up when I have this one to keep me company all day :-) Thursday, August 5, 2010 Chloe Reflux - I've been avoiding the blogosphere for the past few weeks. I'm not completely sure why but I definitely have. I'm sure I have tons of catching up to do on all my friends. The main purpose of this post is to publish an update on Chloe's reflux and ask for advice. Update: I followed the advice from my blogging friends and Chloe's spitting up has decreased to almost nothing! Here's our technique: -Feed Chloe in an upright-ish position. -Hold her still for 5-10 minutes after she finishes eating (unless she's feisty and starts bucking like a bronco) -Then pick her up and hold her upright against me until she burps. -Finally, make sure to hold her or keep her sitting for at least 30 minutes after feeding. THANK YOU to the moms who commented on the last reflux post. These new techniques are 100% derived from those comments and they're making a world of difference. I used to feed Chloe a bit then pick her up and pat pat pat. Feed her a bit more and pat pat pat pat pat. Burps were hard to come by and when they arrived they usually came with a bunch of spitup or an awfully wet strained sound. Now the burps are BIG CLEAN POOFS OF AIR. They sound WONDERFUL. I also noticed that keeping her still for a few minutes after eating is they key to getting a good burp - almost like the burp needs to gather itself before I pick her up and let gravity push it up. I don't even need to pat anymore and my wrist/forearm are very happy for that. We visited the pulmonologist yesterday. Chloe gained almost a pound since we saw him a month ago. She's now 14lb 5oz. Again, not too bad but he wanted to see more. I filled him in on our fantastic spitup progress and expected a pleased response. After all, I solved Chloe's spitup problem without using Zantac! Yay me, right? He was holding Chloe, looked at her, and said in a baby voice, "Chloe, can I spank your Mommy? She's in trouble because she didn't give you your medicine." Chloe said, "no." He then went on to explain that the techniques I started using are great for the spitup and congratulations on that but she still has really bad reflux even if she doesn't spitup. The acid comes up and burns her throat - which could cause a decreased appetite. THAT'S what the Zantac is for. Uuuh. Whoops. My bad. He apologized for not explaining that better but I still feel bad. "I thought her reflux was mild. Her pediatrician isn't concerned. And how do you know anything about her reflux, anyway," I ask. Apparently, Chloe's pulmonologist is the only person who really looked at her swallow study because that's where he saw it. I'm mildly annoyed at her pediatrician but he gives me a very diplomatic speech about all Chloe's doctors being a team and they each catch different things. I still think he's by far her best doctor. RX: Keep Chloe on oxygen for feeds and (this time) start giving her Zantac. We'll see him again in 3 months time. QUESTION: Does anyone out there have any great techniques for giving Zantac to an infant. I tasted a dose and it has a pretty strong mint flavor. And my palate is a tad bit more developed than Chloe's. I feel so mean every time I syringe it into her mouth. Her little face scrunches up into a look of pure disgust and she tries really hard to roll away from me. There's just got to be a way to sneak it in....
34: Thursday, August 12, 2010 Leila's Day Yesterday was August 11th, the first anniversary of the day we lost Leila. Thankfully, my parents arrived in town on the 10th. We were super busy all day. Solana had ballet and swimming in the morning. I then went grocery shopping after pumping and feeding Chloe. Then it was a race to get Solana to soccer practice at 6. I don't know how the day flew by so quickly but I was glad for the busy-ness and for the company. I skipped soccer practice because Chloe hadn't finished her bottle by the time they had to go. I flipped on the TV while feeding Chloe and resumed an Oprah I started the day before. I only recently started recording Oprah episodes (when I saw the Twilight cast was going to be on). I'll play an episode while feeding Chloe every once in a while. This particular episode was about match-making but somehow turned into a story about a boy who was starting a baking business. He began the project as a way to cope with the loss of his twin brother to cancer. The story progressed and Nate (the Oprah correspondent sent in to help the young boy) talked to the parents. The mom mentioned that it was hard to move on after their 9 year-old passed away because she was constantly smacked in the face with the fact that he was gone. Christmas. Thanksgiving. His birthday. The list went on and on. After doing so well all day I was practically sobbing watching this show. I felt so sorry for that little boy and his parents. Nate, who also suffered a difficult loss in his life, talked about the way he learned to cope with those difficult days. He said he had to realize that those days did not have power over him or over his memories. The dates were not important. After realizing that he knew that the memories would come and go but they were not dictated by the calendar. I thought it was odd that I randomly watched this episode on the 11th. Some things are just inexplicable, I guess. Maybe I needed to hear him say this. Dave and my dad picked up steaks from Outback after soccer and Solana led us in prayer/song before we ate. We finally headed outside - each carrying one balloon to send to Leila. Solana gave Leila a head's up that they were coming and Chloe released her balloon first. My mom said, "Oooh! Chloe wants her balloon to get there first!" It seemed appropriate. It was very sweet and sad. With smiles on our faces and tears streaming down our cheeks we wished Leila a "Happy 1 Year in Heaven" and told her that we miss her. We watched the balloons as long as possible. We even sent one up to my Grandpa, who passed away just a couple of weeks ago on July 26th. We ended the evening with angel food cake. I'm so lucky and blessed to have such a wonderful family. It's days like these that I realize it the most. Monday, August 16, 2010 Chloe's Cold Chloe's been battling a cold for the past week. The pulmonologist & pediatrician both said it's just a summer virus that will just run its course. Poor baby has been congested and coughing up a storm. After a few days of progressively worse coughing (and talking to nurses each day) I finally decided I needed the doctor to listen to her. She got the 'all clear'. Whew! I feel like they all must secretly roll their eyes at me because I'm THAT mom who calls and comes in for everything. I don't mind, though. Her cough finally seems to be getting better but I'll be soooo glad when it's gone! Countdown! I decided to quit pumping when Chloe turns one and have spent the past month slowly transitioning her to formula. She's down to one breastmilk bottle a day this week. I calculated that I'll get back two hours a day when I do that - reducing Chloe-feeding-related activities from five to three hours a day! This is my last week pumping. Is it wrong that I'm more excited about quitting pumping than I am about Chloe turning 1 year old? ;-) Thursday, August 19, 2010 Summertime Blues I can't sleep. It's almost 4am and I've been tossing and turning since 3. Insomnia's not usually an issue for me. Chloe stirs around 3am almost every night lately and I just change her diaper and pass out again. I once learned that, if you can't sleep, you should jot down what's on your mind and then you can get on with it. I found myself blogging in my mind so...here I am. After I wrote my entry about Leila's day I was displeased with it. I felt like I should have written something more poetic - like I didn't do her justice. To be honest though, while I spoke to her a lot in my mind, my heart just wasn't into blogging. I hate to be a downer but I feel like I've been walking around with a bit of a raincloud over my head this summer. Fortunately, it's a small raincloud so the sunshine still makes its way in most of the time. Every once in a while, though, I'll step on the magic rain button and whoosh. Down it comes and I'm suddenly walking around like a Charlie Brown character. The week that Leticia was here and then the 4 days my parents were here were great. I'm seriously grateful for them. They sort of kicked the magic button aside in order to stand next to me. Since their departure I've had some time to live inside my own head, though, so here I am... I've decided that I'm having flashes of the 'anger' part of grief. The thing that clued me in was that Target commercial. You may have seen it - the one with the identical triplets. It's a back-to-school commercial featuring three very cute girls. At the end it shows them leaving down the front steps of the school and at that point their mom walks up to join them and presumably escourt them home. I decided I don't like that lady. She has a smug look on her face like, "Look at me. I have identicals. I'm so cool. Aren't you jealous?" My answer is, "Yes lady. I'm jealous, ok? I'm not supposed to be here. I'm supposed to be exhausted from my 8 month-olds. Not constantly worried about how
35: my survivor micro-preemie is or is not eating and desperate for her to get one step closer to sitting." Whew. There was some ugliness, huh? A friend of mine just posted about a party where she met some people with identicals. She lost one of her twins around six months before me so she's a little bit ahead of me in everything. It was noteworthy so she obviously still felt something and I wonder - how long will it be noteworthy? I can tell you every single pair of identicals I've seen in the past three months. My stomach lurches every time. I know I'm supposed to be "gentle" on myself and grief takes a long time.... But seriously, I want to just be ok and at peace with my loss. I want it to just be in the past - not so fresh all the time. It's been a year. People lose babies every day and some people aren't even lucky enough to have babies at all. I'm blessed to have Chloe and need to remind myself of that. I was blessed with a perfectly healthy pregnancy and full-term baby (and now ridiculously fantastically coping 5 year-old) in Solana. I'm blessed to have a great husband who takes care of us and who lets me lean on him constantly. I'm blessed to have both my parents and need to remember that. Ok. I just re-read the above. Please know that I don't always feel this way. I'm almost certain it's the time of the year. I'm glad summer's so busy so I don't feel this way all the time. I'm supposed to wake up in an hour to feed Chloe before going on a jog. I've been doing a good job of getting out twice a week for a jog and my shrinking waistline is rewarding me for my efforts. I think I'm going to try to get a quick hour of sleep before starting the day. Weird. I suddenly feel better. Thank you blogging world. Summertime Fun - August One of the great things about blogging is that I can get emotions off my chest, acknowledge them, own them, analyze them from outside of my head, and move on. I find this preferable to dwelling. Had I not written that entry last night I'd probably still be stuck in my head. But today I feel good. And I'd like to post the antithesis of Summertime Blues with this, Summertime Fun. Here are some of the fun things we've done this summer. Chloe is like her sister. They LOVE books. She was seriously into this one. I don't remember if Solana was actually reading to Chloe or just posing | See what I mean? | My sweetie pie with the crossed eyes. Mmmmmwah! | Chloe was playing with me from across the room while I was pumping. Not bad pump-time entertainment... | Solana started soccer this month. I love her little shin guards and cleats. I couldn't help but put a flower on her headband. One of these girls is not like the others... There sure are lots of blondies in Ohio! :-)
36: We love camping but haven't taken the popup out since last June. This was Chloe's first family hike at a park 5 minutes from our house. My parents arrived August 10th for a short but wonderful visit. Chloe's checking ou her Grampy. | We love them so much! | Chloe, how am I supposed to feed you with your feet up in the air | She started making this face while my parents were here and kept doing it over and over. We were cracking up. | Solana started ballet this summer. She choreographs her own routines during So You Think You Can Dance and only watches the TV for new ideas. I figured a dance class would be good for her. She loves it!
37: The best dog in the world! Bluebell joined my Mom and me on a hike. | My sister, Leticia, came to visit at the end of June and brought her two kiddos, Mia-5 and Graham-2. They're both adorable. All our pictures from their visit were taken on Leticia's camera, though. I thought Dave had put them on our computer but I couldn't find them. We didn't go out very much but still had a great visit. The girls attended nature camp at the park on Tuesday and Thursday. I bought them these SPF suits. They're only 3 months apart and this was the first of a full week of dressing alike.
38: THURSDAY, AUGUST 19, 2010 Summertime Fun - July Summertime Fun Continued: Centerville has a great small town parade through main street. We could have walked from our house. It's that close. Chloe loves watching Solana and I'm sure she'll be copying everything Solana does as soon as possible. Here is Solana sucking on a candy. (Candy was, by the way, the best part of the parade. I think Solana made out better than she even did on Halloween!) | Here's Chloe sucking on her shoe. Good thing she's not walking, yet... | Here come the cops. Act natural! | I thought Chloe's post-bath curly hair looked so funny. She doesn't even look like herself. | My cousin, Tricia. She and her family live in San Antonio but they travel to Ohio every year to spend the 4th of July with her husband's family. They came over for a visit and I was so thankful that they made time for us. His family lives about a half hour away so it's not exactly around the corner. We had a great visit!
39: Angela's little girl, Kylie, turned 8 and they had a little party. Angela was so sweet. There were only a few girls invited and she made sure they were all healthy so we could go to the party. All the other girls were dropped off so we were the only other adults there which was nice for me - fewer potential touches :-) It was an all pink party. The girls looked so cute! She gave pink flower clips to everyone - even Chloe! I borrowed these Black on White and White on Black books from the library. Chloe loved them (after I wiped them down with Clorox wipes.) | SUNDAY, AUGUST 22, 2010 Chuggin' along I feel like I haven't posted a genuine Chloe update in a while. She's finally getting over her 2 week cold. I thought that horrible cough would never go away but it's definitely on its way out. We've scheduled an EUA (examination under anesthesia) for her eyes in September. The opthamologist will check her retina again to make sure the ROP isn't trying to resurface. He'll also measure her eye and get an updated RX for her contact. It's a surgery and we're never thrilled about those but it's minimally invasive so that's good. Until then we're still patching for four hours a day. Chloe's such an easy-going baby. She yells at me and tries to roll over a bit when I put her contact in (and I don't blame her) but is otherwise extremely cooperative. I'm a lucky mama, for sure! We're still working on sitting. It feels like she's taking FOREVER to sit but we do see progress every day. For example, one of the exercises I'm supposed to be doing with her is setting her on her knees with her bum on her feet and placing her hands on my thigh to hold herself up. It's sort of an upright kneeling position and is supposed to strengthen the muscles between her shoulder blades. She stayed in that position about 15 seconds longer today than she did yesterday. This is cheer-worthy in our house and I was quite pleased with my little one. She'll get here one day soon. She just tends to do things more slowly than other babies. | The good thing about Chloe is that, although she progresses slowly (and sometimes extremely slowly), she's always showing some progress. And for this we are thankful. We're not visiting the pulmonologist for another two months but she has her one year checkup on Thursday. I'm not looking forward to the shots but I'm definitely looking forward to her weigh-in. I hope she's gained. I think she has so we'll see. She was having trouble finishing her bottles and I started getting frustrated because she hasn't increased her intake since May. This resulted in my brilliant plan to reduce her from 5 to 4 bottles per day. She also gets pureed baby food twice a day and my (silly) theory was that she was eating too often. That...did NOT...work. She's back to 5 bottles and two baby food meals. I'm adding olive oil to all her baby food to sneak in extra calories and I think it's working. She seems to be chunking up a bit. We'll see.... I took the advise of my great friends and mix her morning Zantac in with oatmeal. She takes that no problem. Then I use the Grape-flavored Zantac in the afternoon. I squirt that one as far back as I can and along the side of her cheek. She's not thrilled but her expression isn't nearly as bad as it was with the plain stuff. Then I quickly follow with bland veggies. She now knows to open wide after her Zantac because the veggies kill the taste pretty quickly. Chloe's such a sweetheart. We adore her. She's generous with her smiles and they're great smiles, too. Dave and I (well, mainly I) are becoming more easy-going about letting Solana play with Chloe. She's not the most careful child and we have to often remind her not to lean on Chloe and to be gentle when moving her arms and legs around. Chloe is crazy about Solana, though, and smiles any time she comes near. I love it that Solana has a new-found joy in playing with Chloe. It makes her feel good about herself. I'll also let her "babysit" Chloe when I leave her on the floor and walk to the other room to get something. She feels so important. We're looking forward to Chloe's first birthday tomorrow! I can't believe it's been a year!
40: Chloe's Birthday! | Chloe turned 1 year old on Monday! It's now Saturday and I can still hardly believe it. Dave asked me if it felt like a long year or a fast year and I immediately answered, "BOTH." He agreed. We celebrated our littlest princess at home - just the four of us. I wasn't sure what to do about the cake. Usually, babies get to smash a piece of cake around on the first birthday but there's now way I was about to give cake to Chloe. She's not getting cow's milk, yet, and she's still only getting pureed food. I felt kind of guilty about eating cake that she couldn't enjoy but finally decided she needed a cake picture for her birthday book (at least that was my excuse for making a yummy cake :-) It was chocolate buttermilk with cream cheese icing and tasted better than it looked. (While I claim to have many talents, cake decorating is NOT among them.) Solana and I whipped it up together and Chloe watched from her exersaucer. | Dave came home with a huge balloon and new toys for Chloe and we ended the celebration playing in the backyard. Our neighbors even came over to the fence and sang Happy Birthday to Chloe. It was very sweet! And just in case you're wondering - we decided to celebrate Leila's angel day on the 11th - the day she went back to heaven - and to keep the 23rd just about Chloe. It seems that all the families with single-survivor twins do it differently. Many celebrate both twins on their shared birthday but, since Leila left us almost two weeks before they were born, we decided to give each of our girls their own special day.
41: THURSDAY, SEPTEMBER 2, 2010 My Mom's Cancer Chloe's Grammy (my mom), Lydia, was diagnosed with diabetes the day they arrived for a visit three weeks ago. This week she was diagnosed with breast cancer. This has not been a good medical month for my dear Mommy. Fortunately, the diabetes should be manageable with diet and exercise. And we just found out today that the cancer doctor can treat her with a lumpectomy some time in the next three weeks and then radiation therapy for six weeks. We hope the cancer hasn't spread anywhere but they can't know for sure until the procedure. Please keep my mom in your prayers. You all have been so generous in the past with prayers for Chloe that I know we can count on your for prayers for my mom. We love her dearly and want her to be well soon. Thank you!!! SATURDAY, SEPTEMBER 4, 2010 One Year Checkup Chloe had her one year checkup recently. Our pediatrician tends to defer to the specialists for almost anything I ever have a question about. I think she's being a "team player" and doesn't want to contradict them but sometimes I just wish I'd get a different opinion from her to know that she actually has one... I'm sure if she was concerned about anything she'd let me know, though. At least I hope so... She did say something that made me very happy. Upon inspection of Chloe's head and soft spot she commented that, "She has a really nicely shaped head! Especally for having been so tiny." If you have any idea how obsessed I've been about Chloe's head shape you know what a compliment this was to me. I'm pretty sure my face was glowing with pride when she said this. I think it's pretty funny how obsessed I've been with this. But I think maybe this was the one thing I felt like I could affect and actually did! Protein drinks, bedrest, surgery - we still lost Leila and had Chloe too early. Daily kangaroo care, pumping breastmilk - Chloe's lungs and body still grew too slowly. Eye patching and contact use - she still has vision issues and crossed eyes. Daily excercises - still not sitting. BUT rotating her while she slept actually worked! She has a round head. Yay! Small victory but at least something I've done has paid off. Ha! (Yes, I'm being slightly sarcastic but I'm feeling slightly sarcastic :) MONDAY, SEPTEMBER 6, 2010 Mind Over Matter As I mentioned before, I quit pumping on Solana's birthday. It actually took about 5 or 6 days before I pumped for the very last time. Solana was cheering for me to quit, too. Every day she'd ask, "When do you get to quit pumping, Mommy?" I think she must have been excited since I've probably told her, "No, I can't. I have to pump now," over the past year too many times. So we're all enjoying my new-found freedom. The month before Chloe's birthday I actually transitioned her from breastmilk to formula. Each week I'd switch one more of her daily bottles to formula. So I had a little surplus of milk in the deep freezer. This time I was smart and scalded the milk before freezing it (this is the process of heating the milk on the stovetop just until it starts to boil and then immediately freezing it) so it wouldn't get that yucky lipase taste. I got a little nervous Thursday when I noticed I was down to my last bag of frozen milk. "This is it." I thought. No more Mommy Milk! Then. Lo and Behold. I filled up with milk on Friday. Painfully, too! A good week since my last pumping and after several days of enjoying my new smaller bustline...I couldn't believe it! I didn't think it was possible to get milk again several days after drying out but there it was. Weird. I actually think my nervousness over giving Chloe her last milk brought it back. The mind/body connection is pretty crazy sometimes... WEDNESDAY, SEPTEMBER 8, 2010 Floor Time is Exhausting For some reason, our floor has turned into a magical sleeping potion for Chloe. I often set her on her blanket with some toys when I need to do something quick. Today I set her down to fix Solana's hair and found her like this after one minute. She's making a habit of it, too. I set her down later to play as I folded clothes next to her and she did it again! Silly goose. | MONDAY, SEPTEMBER 13, 2010 Feeding Issues Chloe had her 1-year vaccinations a couple of weeks ago. Last weekend she had a little reaction to the MMR vaccine. It's completely normal and wasn't a big deal - few red bumps and low fever. I'd much rather her have that than measles, mumps, or rubella, right? But she wasn't eating really well for a few days so I went ahead and took her to the doctor just in case. Chloe's not much of an eater to begin with so I always get nervous when she eats even less than normal. The ped. said she's fine and confirmed the MMR reaction. I was anxious to get Chloe's weight at the doctor's office. She'd just been weighed a week prior but after three days of somewhat pathetic feeding I was curious if she'd lost weight. Surprisingly, she went from 15lb 1oz to 15lb 8oz! Wow! That was pretty impressive! Then we came home and Chloe took a huge dump in her diaper. I opened up the diaper, "Um, yeah. There's at least 7oz in there...." Stinker... (Note: I actually considered weighing her diaper a la NICU style but we only have one small scale and it's my kitchen scale. Cookoo! Cookoo! I chose not, though.)
42: Her formula intake seems to have settled around 18-20oz per day. Seems pretty pathetic to me but she just refuses to take any more. She always finishes her purees, though. I called the NICU nutritionist (I'm so thankful to still have a relationship with her!) and she said most babies naturally decrease their formula intake at around a year old and as long as Chloe's above the minimum of 13oz per day and she's gaining weight we're ok. I'm going to try adding a little bit of cow's milk to Chloe's bottles to see if that makes them more appealing and add a third baby food meal per day. I suspect Chloe has some texture issues we need to work through. She kind of gags if the puree isn't runny enough. I recently made her some chicken puree (my first attempt at making baby food) and it was pretty good but still had a slight grainy texture to it. I mixed it with apples one day, peas the next, and sweet potato on the third day. She ate it all but tried to touch her tongue to her chin with every bite. I'm surprised she opened for each new bite. We'll keep working on it. The pediatrician said to work on different textures for about 3 months or so and call her if I can't get Chloe to easily eat more than soupy baby food. I really really don't want a referral to the Feeding Therapist so we'll work on it. Any suggestions on how to work on texture issues would be greatly appreciated! I'm trying to enter the world of baby food making and recently bookmarked wholesomebabyfood.com. Wish me luck! TUESDAY, SEPTEMBER 14, 2010 He Knows Me Too Well As we sat down to dinner last night I commented to Dave, "Babe. I have gained X pounds in the last two weeks since I quit pumping! Can you believe it? X pounds!!" Dave under his breath, "I'm going to suffer for this, aren't I?" Pretending I didn't hear him, "WE are going on a strict diet/exercise regiment starting now." Dave, "Great." TUESDAY, SEPTEMBER 21, 2010 Eye Exam Under Anesthesia I'm sitting in the hospital waiting for Chloe to come out of recovery. She just had an EUA (Examination Under Anesthesia). The doctor just came to speak to me. Chloe will need another cataract surgery. He said this is common in children because their bodies heal so aggressively. He said he doesn't use the term "scar tissue" but my understanding is that it's sort of a combination of scar tissue/cataract regrowth that is currently clouding her vision and needs to be removed via vatrectomy (looks like we didn't dodge the vetrectomy bullet after all). In addition, her right eye (the good eye) is near-sighted. I'm feeling suddenly very bummed. This is not the news I expected to hear today. Once again my optimism backfires and has momentarily thrown me into despair. Or maybe it's my spoiled-ness. I hate it when I don't get what I want. Everything seems fine when she comes out of recovery. My spirits are immediately lifted when I see my little Princess hugging her pony pacie and wearing her hospital gown. She's a sight to behold. She'll be fine and this will just be another notch on her very notch-peppered (and very small) belt. I think we're just beginning to realize her vision impairment. We've been in a wait-and-see pattern for quite a long time now. We're slowly but surely getting to a place where we'll have an idea of her vision. I dared to ask the doctor if she'd need correction on her right eye and he said, "yes, but not for now. We'll just use her near-sightedness as another way to force her left eye to work harder." I didn't ask for any more detail. Who knows what the future has to hold for Chloe? One step at a time. | TUESDAY, SEPTEMBER 21, 2010 Chloe's New Hairdo | She likes it!
43: TUESDAY, SEPTEMBER 21, 2010 Chloe's New Hairdo | TUESDAY, SEPTEMBER 21, 2010 Chloe's New Hairdo | WEDNESDAY, OCTOBER 6, 2010 Visit from Peggy We moved to Ohio in January of 09 - going on two years now. The only reason we decided to move to Ohio was because Dave got a great job that would afford us the luxury of me staying home. We were living in Denver and I loved my job but commuted almost an hour each way to work. I'd drop Solana off by 7am and pick her up at 5:30. 10+ hours in daycare and only a couple of hours a day at home. That wasn't enough for me. Anyway, we moved to Ohio with zero ties. Dave is from San Francisco and I'm from Houston. So far, we've had two visitors from Texas who were visiting the Dayton area for completely different reasons but decided to swing by for a visit. I find that absolutely amazing and wonderful! First | was my cousin in July and last week we had a visit from one of my mom's Houston friends, Peggy. I actually went to HS with Peggy's daughter, Jennifer, and we went to the same church, too. It was great to see a face from home. And Solana and Chloe made out with some great gifts :-) We're actually going to design Solana's Halloween | costume around one of her gifts. Pictures to come... Thanks Peggy! It was great visiting with you, your mom and sister!! (These fuzzy pictures were taken with my phone.) We had so much fun chatting that their "quick stop to say 'hi' on the way to the mall" magically turned into an hour visit! We had 10 minutes to make Solana lunch, eat, and get out the door for the bus. Somehow, (using the miracle of PB&J) we made it - LOL! | SATURDAY, OCTOBER 9, 2010 Feeding Excitement - Baby Food Making I'm so excited! Chloe's actually still sitting next to me in her high chair playing with cracker crumbs as I type. As I mentioned before, Chloe does not like any type of texture in her food. We've experienced vomit at the dinner table a few times. 1 - mashed avocado experiment gone horribly awry; 2 - first homemade chicken experience was a grainy nightmare; 3 - "melt-in-your-mouth" puffs that really don't m-i-y-m; 4 - I actually don't remember the 4th but I'm certain there was a 4th. We had a visit from the Occupational Therapist on Thursday and she suggested that Chloe's vision issues might be partly to blame for her texture issues. She noted that we all look at our food to see what we're about to put in our mouth and that maybe Chloe just can't see the chunks in her food. She's not expecting them so they surprise attack her gag reflex when they hit her mouth. She also said that Chloe may need practice moving food from side to side with her tongue. I'm skeptical because I know of two other babies with similar issues and neither has vision issues but I'll never throw out an educated suggestion. We're taking a two-pronged approach to the issue. First, I'm starting off meals with a wash cloth routine. I get a clean and rough-ish wash cloth and rub it up her arm and neck and toward her mouth. Then I rub it on her lips and on the inside of her cheek giving her a chance to reflexively attack it with her tongue. This sort of warms up her mouth for what's to come. Then I crumbled up some saltine crackers and put a bunch on the tray for her to play with. She seemed to enjoy moving them around with her fingers. This is another way to prepare her for what's about to hit her mouth. I then sprinkled a few cracker crumbs on top of a spoonfull of pureed baby food and into the mouth it went. No reaction! We continued this over and over and I even started sprinkling bigger crumbs. At one point she was even doing a chewing motion when a fairly large chunk of cracker went in. And not a single gag! This is terribly exciting! We mixed smooth and crunchy! I can't wait to try again :-D I'm using saltines for savory foods and will try graham crackers for sweeter foods. And speaking of baby food. I just started making it about three weeks ago and am crazy about it! Thank you to my anonymous friend who suggested lentils. I LOVE giving Chloe lentils. They're helping to keep her regular, too! This is always a concern with Chloe. She seems to have small pipes, if you know what I mean. If you have ever considered making your own baby food I strongly recommend it. I don't know for sure if it's cheaper but I wouldn't be surprised. Plus, you don't even need to buy a fancy baby food maker. I just cook in the oven or stovetop, puree in the blender, and freeze in these handy dandy trays ( http://www.toysrus.com/product/index.jsp?productId=4312595 ). The next day I pop them out (very easy to do with these trays) and into a labeled Ziploc and then just use the cubes as I need them. The quality of the food is amazing. Plus, I'm able to buy many more organic foods than stores sell in baby food jars. Some of our favorites are: - lentils mixed with blueberry juice (the juice is leftover and frozen from when I made blueberry puree) - lentils mixed with canteloupe - blueberries (I also mix into yogurt) - nectarines - plums - spinach mixed with blueberries - peas - peaches - green beans I've also made chicken and that wasn't a huge hit but I've been able to successfully hide it in peaches and nectarines. I also heard babies love pears so I bought a bunch of pears yesterday. I'm using wholesomebabyfood.com as a guide but have also received a couple of recommendations for Annabel Karmel.
44: MONDAY, OCTOBER 11, 2010 Chloe's Trying to Sit I've been meaning to write a post about Chloe's sitting workouts for quite a while but I never seem to have a photographer around when I work with her. It's amazing to me how much time and energy we've put in to get her sitting. I don't even remember working with Solana at all. She just....did it! Chloe has weak upper body muscles so we do lots of exercises to develop her muscles and build coordination. Who knew so many muscles came into play when sitting?!? Here's just a sampling of what we do. Chloe's PT lent us a big red exercise ball. I put a blanket on top so you can't really see its cherry red color in these pictures. We already gave it back and I don't really miss it in our living room. :-) I also do these same exercises by sitting on the floor with my legs out in front of me and placing Chloe on my knees. | 1. I set her on top of the ball and roll the ball a few inches toward me. Chloe is forced to use her back muscles to hold herself up. Notice her "wings" are out. She uses her arms to help maintain her balance. She should stop doing this eventually - once she gains strength. | 2. Now I roll the ball away from myself and Chloe is forced to use her abdominal muscles to sit up straight. She's in the process of pulling herself up here. It almost looks like she's doing a situp - you can really see those abs working! | 3. Now I put her on her belly. I work for a while to make her straighten her arms. I push the ball away from me and she's forced to use the muscles across the top of her back. We find lots of creative ways to get her into this position around the house. Those muscles (between her shoulders) need lots of strengthening so she can use her arms to help her sit. | She's able to sit for a little while. We have a few great toys that are motivation enough to keep her up. | I think she enjoys sitting up. | She looks proud of herself but I don't think she realizes... | She's beginning to lose her balance. | She doesn't yet know how to use her hands to catch herself. Once her balance is lost it's all over. | She didn't even cry. She just laid there for a moment before rolling over. Then I sat her up and she tried again. | Her progress is very VERY slow. We're used to slow progress with Chloe and take what we can get. She'll get there soon enough. Sitting by herself behind the piano for even a minute is tremendously better than what she could do a month ago. TUESDAY, OCTOBER 12, 2010 Vitrectomy today Chloe just had her vitrectomy. The doctor said the surgery went well. He tried to remove enough so that the film doesn't grow back but he said it's frustrating with little ones because it often grows back on them (as opposed to adults where it does not) requiring future surgeries. I'm glad the surgery went well but a little disheartened about her future vision outlook. He said that kids with this problem can usually only see the big E on the eye chart - and that's only if we continue with the patching and contact lens use. Deep breath. Don't worry about what's to come. Just do what you can for now.
45: WEDNESDAY, OCTOBER 20, 2010 She's Getting Glasses! Chloe had her second surgery follow-up today. She's doing well after surgery. In fact, we've really enjoyed this good week off from patching and the dreaded contact lens. (She's actually been wearing a hard eye guard over her left eye and only seeing through her [good] right eye since surgery.) Dave and I are amazed at how much better she obviously sees when only looking through her right eye. I'm convinced that some of her developmental delay can partially be attributed to her frequent lack of vision. If you think about it, she wears a patch over her good eye for four hours a day. That's four hours a day of significantly impaired vision! The thing to remember is that she will catch up in the other areas but we have a limited window in which to train her brain to use that left eye. To answer a question from our friend, Jen, Chloe's prescription strength in her left eye was +23 but they're changing it to +18. This is good, I guess. It means (supposedly) her eye is getting better. I take this with a grain of salt and just hope that they doing they best job they possibly can when deciding on her prescription. It's hard for me to believe they can really get the right prescription for an infant by looking into her eyes. Plus, her vision isn't fully correctable. It's not like their assigned correction helps her to see perfectly. We also talked about the fact that Chloe is near-sighted in her right eye. The doctor put her lens in front of my eye. It's not super bad. Her prescription strength is -2. I'm actually near-sighted with an astigmatism and my eyes both require a correction of -5.5. It's on the strong side and Dave laughs (and I certainly can't blame him :) when I'm feeling around for my glasses and they're right in front of me. The good thing is that it's completely correctable and it makes -2 seem not that bad at all. It does make +18 seem pretty far out there, though! Anyway, we're going to put glasses on her to correct her near-sightedness and give her the best vision possible. Of course, this will only be the case while her good eye is not being patched. Yes, the patching continues with no end in the near future. But it'll be fun to see how she fares with her new glasses. One of her favorite games is pulling mine off my face and waving them around in triumph as I mock-complain that she's so horrible for stealing them from me. (Her squeals are absolutely wonderful during this game!) We'll see how she keeps her own glasses on. The good news is that she's absolutely 100% ADORABLE with her new glasses! I never knew how much I'd love her in them! Really. You'll see. They're ordered and arrive in 3-4 business days. Seriously, though, the really good news is that she does have such good vision in that right eye. She will read. And for that I'm relieved and thankful. As for playing sports. Well, I'm not so sure about that. The doctor suggested she'd need to wear safety sports goggles for sports since she doesn't have a "back-up eye" in case of injury. We might opt for a more eye-safe hobby like piano or flute... That's yet to be determined... MONDAY, OCTOBER 25, 2010 Babies Grow Up Too Fast I've been dwelling on a Facebook comment that I read a couple of weeks ago. A friend with a new baby posted something about the fact that her baby is growing up too fast. That's what everyone says. Someone else chimed in with, "I wish there was a way we could make them stay small for longer." My sarcastic self thought, "Ummm. I think I've got the recipe for that but I don't think it's recommended...?" Don't worry. I didn't actually put that on Facebook. I just thought it. But then I thought some more. And some more. I figured that since I didn't want to type my comment that it probably was because it wasn't very nice. And since it wasn't very nice I should probably think about an attitude adjustment. Another friend of mine has a daughter who got RSV shortly after she was born ten years ago and is now struggling with all kinds of medical problems. This friend is one of those people that quotes Ghandi all the time and seems to have this never-ending flow of positive energy and thoughtfulness. I love reading her quotes. They're always inspirational. Anyway, she once told me that, "I choose to see the beauty in it." I go back to that comment often. I love it. So I got to thinking. Yes, it's tough to have a baby with medical problems and to constantly fret about when she'll ever sit, crawl, or walk. Worry about her getting sick or what medical problems are yet to come. BUT, on the other hand, I should also appreciate the fact that I still get to snuggle Chloe without her toddling away, hold her bottle for her and study her face while she eats, carry her around because she still needs me to, etc. They DO grow up fast. But I guess in a way I'm lucky because I get just a little extra time with my little one being, well, little.
46: THURSDAY, NOVEMBER 4, 2010 Chloe in Glasses How cute is this face? Go ahead and tell me. I love hearing it :-D We're still working on keeping the glasses on. She doesn't rip them off but she likes to use her little fingers to slide them down and into her mouth. She lasted two hours last night so she's getting much better! Chloe had her third post-surgery (that is, post-second cataract-surgery) follow-up today. The doctor said her eye looks good. I asked him what that meant and he said that her eye reflected the proper red color at him when he shined a light in it. I think that means they got out all of this secondary cataract. He's reassured by the fact that I'm able to successfully keep the patch over her good eye for four hours a day. This tells him that she's able to see out of the left eye enough to tolerate the patch without much argument. I agree that she can see well enough to look at her big black and white book and play with toys. I hope this is truly a good sign and not sugar-coating talk... We'll continue to patch for four hours a day in the hopes that we're forcing that eye to grow stronger. In addition, we decided to switch from her SilSoft lens (this is a soft contact with a firmer center) to a gas permeable (hard) lens. She was fitted for that today. The guy at the vision center tells me that aphakic babies (babies who don't have a lens in their eye) are getting better vision results with gas permeables. Plus, they tend to stay in better. "And the downsides," I asked? He said there were none to speak of except that they take a little getting used to and might be uncomfortable at first. He suggested that Chloe should maybe switch to gas perm. some day and I asked, "Why not now?" No reason so we're going for it. Chloe actually lost her last soft lens on Tuesday - two days before the fitting - and I had a complete meltdown. Crying, pleading with the lens to appear, crawling around the room, snot, swearing at fact that I can't just dress my child and go, life is so unfair. You name it. I was quite the pathetic sight. If this new lens can prevent another one of those it'll be worth it! :) As the technician tried different sizes on her eye this morning he mentioned that she'd develop a callous on the inside of her eyelid. Yikes! So that's why it's uncomfortable at first... Well, we're still going for it. I hope the transition isn't too bad. It seems like it'll be worth it in the long run. THURSDAY, NOVEMBER 4, 2010 Piano Virtuoso | Angela's At It Again My friend, Angela, just finished some amazing work on family photos for us. I'm so excited about the slideshow she put together for us! I think I've watched it about 40 times! Here's the link. I was asked to download a flash player thingie in order to watch the slideshow. It's a super quick download and then you'll see the slideshow. Make sure to have your volume on because she coordinated the pictures with the music. It's a very thoughtful and loving job. I told her that my house would be an Angela Maggard Photography gallery very soon :-) http://www.photodex.com/share/pixiedust2009/k4a29mg4 Also, look under the main viewer to see some of her older slideshows. The slideshow of Chloe's homecoming is on there. Take a peek to remember just how tiny she was. She really is amazing!
47: Our little sweetie pie | THURSDAY, NOVEMBER 11, 2010 Physical Therapy Chloe gets physical therapy twice a month through a state program called Help Me Grow. It's a free social program for which I am VERY thankful. They come to our house, which is wonderful! She has a case worker and early intervention specialist who follow her. We make 6 month goals and work toward them with a PT, Occupational Therapist, and Speech Therapist. Chloe's team is exceptional and I love having them! | Thanks in part to this team, Chloe is finally a sitter. She can sit for unlimited periods of time playing with books, blocks, you name it (Bluebell even shares her toys if I'm not looking - blech!) And that celebration lasted a whole day... So now we're working on crawling. Our first real crawling visit with the PT came on a day when Chloe's case worker happened to be visiting. The case worker was asking me lots of questions and trying to come up with new goals, so my attention was drawn away from the PT. She showed me briefly what she was doing with Chloe but I didn't get the hands-on instruction that I normally get for new exercises. The following three days kind of sucked. I just couldn't quite get Chloe to do what I wanted her to do. (She's a smart little turkey and quickly learns how to wiggle out of unappealing positions.) After ending several sessions with me soaked in sweat and Chloe laughing at my incompetence I broke down and called the PT. Within 30 minutes she was back at our house going over the exercises in greater detail. Now, this is my only experience with a PT but I'm going to go out on a limb and say she's a good one! And she's never once told Chloe to "stop crying!" (That comment's for my friend, Mel.) ;-) Our goals for now are to improve Chloe's strength between her shoulders and on her hips. Muscles used for crawling. After three days of sucessful exercises Chloe can do this.... | MONDAY, NOVEMBER 15, 2010 Synagis I just learned that Chloe was almost denied a second year of Synagis! Synagis is the shot to help prevent RSV (Respiratory Syncytial Virus). Very young babies are at risk for complications if they contract RSV. But, as you can imagine, so are babies diagnosed with Chronic Lung Disease of Prematurity. For otherwise healthy kids and adults RSV usually presents itself as a simple cold, cough, runny nose, etc. And for this reason, it's very scary to me. Someone with a simple cough could infect Chloe with RSV. I called her pulmonalogists office the other day to ask exactly what are her risks if she got RSV. Bacterial infection, dehydration, difficulty breathing, increased oxygen requirement - and hospitalization. Sometimes I get the feeling people think I'm overprotective of Chloe (not that I care). But if you've ever watched your child bradycardia, go limp, and desat until they turned gray right in your arms...or if you spent 150 LONG days juggling home life while traveling to and from the NICU to visit your baby - then you would probably be pretty scared of RSV, too. Prematurity doesn't end when they come home... I also learned that the only reason the insurance company approved her was because she's still on oxygen. I've never been so grateful for Chloe's pulmonalogist! Thank goodness for his last order! I just received the letter from the insurance company in the mail. It states that she's approved for 5 doses (they're given monthly) and that will get her through RSV/flu season. We go visit the pulmonalogist on Thursday. I don't think they'd pull back approval if her oxygen status changed but I'm scared to ask. I'm sure they were less than anxious to approve synagis (at $1200 a month). For now I can take a little sigh of relief. In the safe confines of my house, that is, because the actual Synagis still hasn't arrived for Chloe to get her first dose.
48: FRIDAY, NOVEMBER 26, 2010 Happy Thanksgiving Wow this has been a busy month. I think I'm going to try and do a bullet-style summary just to keep it easy: Dave was gone for 11 days toward the beginning of the month. We were super happy to have him back home and decided we definitely prefer when he's here :) We managed to keep everyone fed, clean, and happy, and even the house was in fair condition. But oh were we thankful to get him back! Chloe saw the pulmonologist. I was nervous for two reasons. 1. He would have an opinion on her weight gain and that always makes me nervous. 2. If he was happy with her progress he might take her off oxygen. What if that changed her Synagis status? But we got good news! He said these words, "I am happy with her growth. She is doing great." Yay! He showed me her growth chart and, at 17lbs, Chloe is ON the growth chart for her adjusted age of 11 months! This is so awesome! I never anticipated she's actually be ON the chart. Of course, she's dangling at the very bottom but still! And he knew very well that her oxygen status might have an effect on her Synagis approval. He recommended leaving her as-is until after the winter. At that time I'm to call to schedule a "sleep study" so we can possibly lose the oxygen for good. Now, I'm not going to comment on whether or not he specifically kept her on oxygen because of Synagis. I mean, I can't read the guy's mind... I'm just glad he made that choice! Can I just say that I am thankful for Chloe's wonderful pulmonologist? Seriously, I'm going to write him a love letter one day because I love him! We took a trip to the Pediatrician's office to get Chloe's first dose of Synagis. Yay! And the pediatrician also mentioned Chloe's growth. As she leaned over to show me the growth chart, and the fact that Chloe is on it, I knew what I'd see. But did I decline the opportunity to look? Heck no! I happily gazed at that little curve. It starts to flatten for most babies at this age but Chloe's curve is still going upward! I know some babies who have a heck of a time growing so this is certainly something to be thankful about. Chloe is now sporting her very first gas permeable lens. So far so good. She's had it in for two days now and hasn't fussed about it at all. Supposedly, she builds her callous during the first two days so I'm thankful we got through those days without any apparent discomfort! We have two little bitty teeth poking through her bottom gums. Solana's first tooth didn't break through until she was a year old and it took another 3 weeks or so for it to come all the way out. So I'm not surprised to see Chloe's first teeth breaking through right before she's one year adjusted. I am a little bit nervous, though. Two words: Enamel Hypoplasia. Also known as Preemie Teeth. Chloe has all the risk factors for teeth erupting sans enamel. I'm excited about her first teeth coming in - It's such a milestone - but nervous, too. Chloe has just about every risk factor: extreme prematurity, intubated for long periods of time (I would call 90 days a long time), feeding problems in calcium deficiency (2 months on only IV nutrition). Yep. Chloe's an ideal candidate. I see a pediatric dentist in our near future. Um. Thankful that pediatric dentists exist...? Well, enough for now. A happy babbling baby just work up for her nap. Gotta go tend to the princess :) THURSDAY, DECEMBER 2, 2010 Contact Drama The last several months of Chloe wearing a contact lens have been nothing if not drama-filled. Dave, my mom, and my sister have been lucky enough to hear me b!&ch and moan about her contacts and the vision center pretty regularly. I thought it might be *fun* to record all this excitement in one spot. Posterity, right? Maybe Chloe will look back on this post one day and shake her head at the absurdity of it all. - A couple of months ago the vision center folks informed me that Chloe's lenses were supposed to last three months. I found this news slightly disturbing since they told me "one month" during my training. Fortunately for them, I have yet to discard a lens. They've all been lost so the fact that I'm almost through a year's supply of lenses in three months...well, that's on me. - Then I decided to switch Chloe to the hard lens (a.k.a. gas permeable lens). The vision center guy (we'll call him Skip) schedules Chloe for a fitting on the same day as her next appointment. Guess what happens the morning before that appointment. You got it. We lose a lens. Fortunately, Skip gets us a replacement at no charge. - After Chloe is fitted for a hard lens Skip orders her lens and says it should arrive in 4-5 business days. This is fine but I'm in no particular hurry considering Chloe has a brand new soft lens in her eye now. Three weeks later we happen to be at the hospital for a pulmonology visit and I decide to stop by to check on the lens (since I haven't heard from them). Skip searches around and finally finds the lens but he doesn't have the special solution or plunger necessary to remove the lens. (Seems like maybe he should have ordered them all together...?) Again, I'm in no particular rush, so I don't make a big deal out of it. He schedules an appointment for us to come back 3 days later to place Chloe's new lens and to train me on it.
49: - Three days later we arrive for our 830am appointment. This is really inconvenient considering the fact that we're all usually in our pajamas and sleepy-eyed at that time but it was the only time that worked in order to get back home to get Solana to school on time. We arrive and Skip isn't there. We wait. The girls call him. We wait some more. I suspect he forgot our appointment. 35 minutes later I see him rush in. 10 minutes after that he comes to me with a story about how the plunger hasn't arrived and FedEx this - shipping room that - excuses. I give him THE LOOK. (This is a look that all the women in my family are born with the ability to make. It can chill the blood and has been known to turn people to stone.) "Skip. You realize we've been here for 45 minutes and we live a half hour away? This is decidedly inconvenient, Skip." He offers to come to our house. Agreed. Skip lives to see another day. - The following evening Chloe's in her high chair and I'm feeding her. I can't see her contact. You've got to be kidding me! It's gone! Chloe has been in 3 places since I last checked her lens. She played on her blanket, took a bottle on the couch, and ate dinner in the high chair. Dave and I spend 45 minutes on hands and knees but there's no lens to be found. How could I move her twice without checking for a lens! Aaaahhh! - The next morning we're back at the hospital and, fortunately, the plunger has arrived! Chloe gets her new hard lens. As Skip is demonstrating how to handle and clean the lens I look at the bottle from which he just took the lens. On the lid is written, "C Jordan L." I think the C must stand for "Chloe" and the L for "Left Eye" but what's Jordan? I ask and discover that Skips about to put some other kid's contact into Chloe's eye! I flatter myself and decide that my incomparable beauty must make him nervous. This is the Wednesday before Thanksgiving. - The new contact seems to be working well. I'll be darned if Chloe isn't already seeing better. Then, on Saturday morning, I'm cleaning her lens and am having trouble getting all the proteins off it. Skip did mention that these lenses are more durable than the soft lenses. I rub harder and my very short fingernail clips the edge of the lens and chips it like an eggshell. The chip feels sharp. This can not go into her eye. It's Thanksgiving weekend. I call the doctor on call and there's nothing he can do. These lenses are special ordered and they wouldn't have any in stock. (Once we're settled into her new lens and past this trial stage we'll always have two at home.) They'll need to order one. Chloe will have to go all weekend and longer without anything on her eye. I'm freaking out but it is what it is. There's nothing to be done. The doctor asks where the chip is and comments that sometimes patients have chips on the inside of their lens and don't even know it. After Chloe's nap I start thinking and finally decide to take my finest softest nail file to her lens and file it until it's smooth. Wash. Rinse. Wash. Rinse. I put it in and she's fine. No complaints. We're going in tomorrow for a scheduled checkup plus they got the replacement in today. Seriously, Chloe is surounded by a bunch of nincompoops! I don't know how she can put up with us! Note: Regardless of Skip's screw-ups he does really seem to know his contact lenses and works closely with the leading researcher and developer in the nation. He always gives thorough and knowledgeable answers to all my questions. He may be awful administratively but I do trust his knowledge about contacts. I'll just make sure to always check Chloe's lenses before putting them in her eyes... | Bluebell | Monty | Serafina | Hardy