Next week is the Audiologist, a weigh-in at her pediatrician and a trip to the Neurologist... whew, Claire will be a busy gal!   Wish her luck at the Neurologist, it may be one of her most important tests yet!
Claire had a nice day. She played at her daycare with friends and came home to spend the evening with her family. Claire spent most of the evening sleeping, she was so exhausted, maybe from playing so hard at daycare. Mom noticed she is holding her head back more than she probably should - as if she is looking at the ceiling. Something the OT mentioned at the clinic last Friday. Also mom has been rubbing the back of Claire's hands... the OT said that would make her want to open them, and she seems to be relaxing them a lot and even opening them for quick moments (also getting very annoyed with mom). Mom is very excited about Claire's potential - and these little things are so worthwhile!

Claire was very good for her mom today. Mom was brave enough to take all three kids to church, and Claire slept through it all, even though her big sister wanted to wake her and kept knocking on the carrier where Claire was sleeping. Big sisters can be annoying.
Later, we went to Claire's uncle's home for swimming and pizza. It is always big fun over there... it was thundering a bit when we got there, so the kids were acting a bit wild for a while until the storm moved on...then burned off all the energy stored up over the weekend (and more) swimming in the rain... looking at ants, and trying, when wet, to hug their dry uncle.
Claire's dad was able to join us too. He'd been in class all week/weekend and will soon sit for his real estate license- whew, he's so glad that class is over. He was also singing (he's got a rock and roll band) over the weekend in the evenings, so the kids loved having him to cuddle and play with!

Claire and her mom and brother took it easy all day. Claire's sister was in her room most of the day 'trying' to take a nap, but perhaps not too sleepy. It was rainy the whole day, so we played, watched tv and ate. Claire ate really well in the evening when mom wanted to go to sleep, but Claire wanted to have the bottle in her mouth, not necessarily drinking, but fussing when it was taken out of her mouth. Maybe we should revisit the pacifier idea.
Her congestion seems to be gone.

This morning, she will have an oz or 2 of water with a splash of juice to see that it goes down easily.
Giving her milk when she is congested doesn't seem right, but then, giving her only water doesn't seem right either... but if she eats as well today as yesterday, one feeding of water shouldn't hurt a thing.
Claire had her Infant Development Clinic today at the Children's Home Society. She was evaluated and had a pretty good report card. To sum it up, she scored 0-2 months status on most things, however scored 2-3 months on her hands to mouth. We will be working on opening her hands, and she will be getting 'little gloves' soon to help her with that. We will also be working on her upward gazing, which she loves to do, and we need her to focus straight ahead. Overall the visit was very productive and she met some very wonderful ladies who are going to help her stay on track with her physical milestones. Her mom is so very excited for Claire. Next we get a 'program' which will map out Claire's goals. We were able to meet with the same Occupational Therapist (OT) that helped Claire learn to eat when she was in the hospital. Claire LOVES her!! :o)

Claire ate all day. Aside from when she would nap, she seemed so hungry all day, we don't think we could feed her enough. She was at her daycare, and had 3 oz in 3 hours, and that is after her mom fed her 2 oz before dropping her off.
When she got home in the afternoon, mom kept fixing bottles.... 3 oz at a time. She drank fairly slowly, but her eating was so constant, perhaps she just needed all that sucking.
In the evening, she drank slower and her congestion was really bothering her. She woke up several times, fussing, and by the time mom got her first bottle of the night ready, Claire would be sleeping - soundly, as if to say, 'Just timing you Mom - and you took too long and I got better things to do'... so mom would lay next to her waiting for the next 'squalk' and she would fuss, but not seem hungry. Perhaps that is a result of the congestion. So eventually, she drank 1 oz in a 2 hour feeding, and went back to sleep for the rest of the night... er... morning (aside from a few more 1 second fussiess randomly throughout the night). During that 1 oz feeding we tried to clean out her nose with nose drops and aspiration... yeah, THAT woke her up.

Claire has been doing great. Except for her little congestion, which makes mom give her more attention during Claire's meals, she is eating really well. When her congestion is bad, she takes a few gulps, and pushes the bottle away, so she can catch her breath, then she roots and wants her bottle, so she can take a few more sips. Last night she stopped drinking and started breathing through her mouth with the bottle still in, but then once, she had milk in her mouth still, so it wasn't a really good idea.
Her mom has been putting saline drops in her nose and aspirating her nose to clean it up some... we can hear her congestion in her nose. She has been sleeping in her carseat in her room for the past few nights with the humidifier on, and the dr said she could have a small dose of Pediacare. She wakes up hungry and goes to bed hungry and eats well, but during the day... well... I guess she would just rather sleep (esp since she stays awake at night watching her mom try to stay awake for the 3am feeding). I think during the day we'd all like to sleep... heck, I think during the night we'd all like to sleep.   :o)
Yesterday she had a total of 16oz (plus or minus an oz) and that is par for her weight. This morning we went to the dr for our 2 week weigh-in, and guess what... Claire is up by 7 oz! She now weighs 6lbs and 5oz! Her mom was really proud... makes those 3am feedings all worthwhile! ... just gotta remind her daddy of that every once in a while.

Pediatrician appt tomorrow for weigh-in.

Claire had a banner evening yesterday... we took the kids swimming and she ate about 4 oz in about 3 hours. She got home and had another 2 oz around bedtime. She slept in her carseat the whole night, but the congestion came back, so she only had 1 oz during the night, but bounced back this morning guzzling over 2 oz. in nearly one gulp.

Claire is still not eating as well as we would like. After going to bed at 11pm, mom woke her up at 3:30am and was up until 6am... she drank about 3 oz during that time, so she is getting some food. She had about another 5 oz between 9am and 4pm (that is about half of what she needs today anyway - she needs at least 16 oz per day) She is just drinking slow, and not really guzzling like she usually does. It could be the heat, it could be her congestion, but she has picked up her eating some today. She has been sleeping a lot and we've been waking her up to eat... she even dozed off during mass this morning.
We planned to take the kids swimming today, but it looks like rain and thunder here... but the day isn't over yet, and Claire's big sister doesn't want to take her nap (as usual).
We have a weigh in on Wednesday (maybe shots), and a Early Intervention clinic on Friday.

Claire is doing well today, she just hasn't been eating as well as we like. She didn't drink much yesterday, just a 1/2 oz at a time... so we'd sit with her frequently and for a long amount of time. Part of the problem is, perhaps, that she is sucking so hard and biting down, that the nipple collapses (flattens out). So turning the bottle frequently seems to help. Another problem she has is that her nose is congested, and it is hard to suck a bottle in your mouth if you can't breath at the same time through your nose. So she isn't sucking very hard (so she can breathe out her mouth). After her 3am feeding, she was making loud nose noises, so we could hear how congested she was. So, she slept in her carseat/carrier, and seems to be better today. Just wants to sleep a lot, so we've been waking her for her feedings... probably still recovering from her wild party weekend. :o)
She will have her humidifier on tonight, and maybe sleep in the carrier again.

Claire was up last night with her daddy until about midnight. Seems she enjoyed the darkness and decided to fuss some, look around some and spend time playing with him. Perhaps she thinks it is good bonding time, but I'm guessing her sleepy daddy doesn't see it that way. She was up again around 3am for a feeding and then again at 6am and 9am. She went to spend some time with her caregiver and drank another 3 oz over a 6 hour period, got home and drank another 4 oz before her evening bath... topped off again with another 1/2 oz and off to dreamland. I guess that would be considered a typical 'Claire Day'.
Her brother was home early today from school, but couldn't play since he was trying to catch up on some school work that he'd been diligently working on all week. When school is out, he will have more time to play.

Claire was up bright and early looking for some food. She drank 2 oz, then another 1 oz before going to daycare. Her daddy is home sick, seems he caught something at the beach, perhaps some food didn't agree with him.
Her favorite caregiver is using the baby sling today so she can carry Claire around everywhere she goes.

Claire had a big weekend at the beach. She soaked up some rays wearing her cute little bonnet. She had nice long afternoon naps and drank really well. All that fresh air can make a baby tired and hungry!
She had the best seat in the house most of the weekend in Grandma's arms. The rest of the time she was held by aunts, uncles and friends, old and new. Every once in a while, mom would have to steal her from someone to get that Claire fix.
The weather was gorgeous and there were plenty of umbrellas to sit under. Mom kept the milk coming whenever she looked hungry.
Saturday night, dad sang and mom let Claire stay up late to listen. It was a bit cool, so she was wrapped in two blankets and snuggled up with Grandma, listening to the music (or maybe just feeling the vibrations of the guitar). Everynight she had her warm bath in her bowl, and slipped into some nice soft pajamas, then more formula and drift off to dream. She would get up at 3am for her middle of the night feeding, like clockwork. Last night, she was very fussy and didn't want to go back to sleep. Poor dad stayed up with her for an hour or two until she finally went back to sleep.
We got back home this afternoon around 3:45pm, and by 8pm she had downed 6 oz of formula. Claire had a lot of catching up to do after the long weekend and sleeping for most of the 4 hour drive. Next time, Claire's toes may get a bit sandy. Life is sure good being a baby!
P.S. I added her JCP pix down below... see entry for May 13th.

We had a nice relaxing day. Mom bought a baby sling yesterday to hold Claire. Now mom can work on the computer with her hands free, and have baby Claire still right there with her. We are still working out the kinks, like getting Claire in and out of it in a timely manner.
It rained all day today, so mom worked while Claire ate and slept a lot. She is getting geared up for her visit with grandma... trying to put on a few more ounces.
As promised a new pix, you can click on this image for a larger pix.
Today we increased the ratio of Isomil to Advanced Isomil (2:2) so she is drinking 1/2 Isomil and 1/2 Advanced. It seems to be going down easy. Claire had a nice night last night getting up only once at 3am to eat.

Claire had her pediatrician appt today. She just went for a 'weigh in', but it turned out that she needed another 2 shots. Poor dear. Still a feather weight however, weighing in under 6 lbs. We will work on it. Perhaps all that rolling over must have burned off some calories, but we are building muscle now.   :o)
The past two nights Claire started her routine... staying awake for a couple hours before dinner, then drinking dinner (still 3:1 Isomil to Advanced Isomil), warm bath, top off with more formula and then into bed. With this routine, she has only needed one feeding at night. She is a very good baby.

Claire had a banner night. She came home from daycare, and as usual, had her tummy time. We set up the playpen so she could have a better place to move around up off the floor (where she had tummy time on a folded blanket). During dinner, she was in it next to everyone and not enjoying this tummy thing at all... she was fussing... but not a sad fuss, not a hungry fuss... a MAD fuss. Mom told Dad that it looked like she was trying to roll over... after a few minutes of that... it got the best of her and the little diaper just went over and she was soon on her back... yep, you guessed it, Claire **ROLLED OVER** ! By the way, babies don't tend to do that until 3 to 4 months. Claire is not yet 2 1/2 months.
Mom was bouncing off the walls! Grandma got the first call, and didn't seem amazed, since she knew Claire was special, and a very strong baby!
Claire also has found her elusive hands...for the longest time those darn hands were just going by, and the mouth would try to catch them, but not with much luck... it was darling to watch... but oh that "mad baby fuss" was getting louder.

Claire had a big night last night... her 2am feeding ran into her 5am feeding. Dad fed her 2 oz. at 2am, and by 2:30 she was fussing, so mom fed and burped her - another 1/2 oz, but it wasn't enough, so another 1/2 oz... and then she still was fussy, so she drank another 1/2oz. She was up to about 3 1/2 oz total when she finally fell asleep.
She was wearing an outfit with a collar on it, and mom tucked the collar into the outfit just before she snoozed. Perhaps the collar was rubbing her cheek and prompting her to 'root' (asking for food). She won't be wearing that outfit to bed again. Also, she was trying to find her hands. Every time her hand would go into her mouth, she would pull it away and get so darn mad she could ... well... fuss! By about 5am, mom was able to return to bed, to wake up at 6am to start work... so mom is a bit punchy today!
Claire's at daycare for half day, then back home to meet with the hospice nurse. She gets weighed on Wednesday at the Pediatrician's office.

Claire had a big day. She woke up and had a bath and off to church with the family in a "new" dress from the hand-me-downs. Everyone loved her and 'Grandmother Dean' sat with her during church keeping her quiet. We went to a reception afterwards and she was held by many who love her while mom and dad got lots to eat. Then, off to see some new homes at the Parade of Homes, which was so nice, but so far from home, so after the long drive back home, and a yummy bottle of formula, it was off to snooze-ville.

Claire slept most of the day and threw up once. I think, as her grandfather would say, 'her shut off valve kicked in'... in other words, she was too full, and it came up. Right after a rather large feeding and during a burp. She is pretty much drinking 2 oz every 3 hours. Doesn't make for a good nights sleep, but her daddy is helping her mommy out, so it isn't too bad. Also, her mom got a great nap today.
We received notice in the mail today of her neurologist appt scheduled for next month.
Her mom got out lots of hand-me-downs from Claire's big sister and washed them. Claire can fit into 0-3 month outfits now, the preemie outfits are just too small and will have to be given away.
Today Claire starts drinking the "new-fangled" Advanced Isomil (soy formula). It has DHA and ARA in it for brain and eye development. We are starting out with a 3:1 mixture of Isomil to Advanced Isomil.

Claire had her audiology appt this morning. Little earphones are put in each ear - one at a time - and sensors are put on her head to measure brainwaves from the sounds while she sleeps. A nurse did the testing and said that Claire reacted in the right ear to the noise in the left ear. Her left ear didn't respond to much of anything. Her right ear test 'didn't match up' like it should, so we really don't know what is going on in those little ears of hers - much less between them. :o) While her hearing may not very good, she said the test was inconclusive since she couldn't test the middle ear due to the tiny size. As a result, there may be blockage (such as earwax, etc) that kept the testing from being correct. We made an appt for next month to have a doctor look at her ears and possibly retest then. The nurse couldn't imagine a hearing aid small enough for Claire.
Mom wanted to take pix of Claire with paste in her hair from the testing, but she wouldn't allow it.

Claire has been doing well. Today we recieved a copy of the geneticist report which was sent to her pediatrician. It seems that Claire is in pretty good shape and she may live beyond 10 years (unheard of for a T18 baby) - providing no pneumonia or high fevers. However, he did not think her brain development would be so good. While that saddens us very much, we know we need to enjoy the present and trust God to take care of Claire's future - it is out of our control.
With this news confirmed, and a call to our pediatrician who said she is in no eminent danger, we realize that we could probably take Claire out of Hospice care... but then, we also know that we shouldn't get our hopes too high.
You can click on the image above for a larger picture.

Claire drank 3 oz at 1am, then another 2 1/2oz at 6am. She was really pounding that milk down and her mom was so proud of her. Claire can roll from her back to her side. She evidently doesn't like being on her back or her stomach.

Claire went to daycare today. She didn't drink much during the day and seems to have forgotten how to swallow and tends to suck and then spit it back out. Not going to get too worried about it. Maybe see if more therapy on eating will work. The therapist in the hospital really did wonders with her... she showed us what to do to help Claire learn to suck and swallow, and we still use that information now when we feel she needs a refresher course.
She also had her 2 month picture taken today. After the first three shots, she decided to go to sleep. Mom was thinking the 'photo shoot' was over, but the photographer had another idea. She waited until Claire was fast asleep, and took more pictures of her... and they are her mom's favorites! Here are her pix as promised.

Claire is doing well today, but with her temp over the weekend, we will likely keep her home today. If she perks up, we may take her to her daycare, she has been sleeping a lot this morning and drinking well too.