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August 9

 

Claire still has congestion, but the runny nose seems to be taken care of. She slept well until about 3:30am, and she was having a hard time sleeping, so mom cleaned out her nose and Claire had 2 oz and fell asleep. Mom put her back in her swing and got some sleep herself from around 6am until 9am, when Claire woke up again. She had 3 oz and went to sleep about 11am in her playpen. Mom had to wake her at 3pm to eat more.

August 8

 

Claire 4 month photosClaire's congestion is pretty bad, but she is dealing with it. Between the decongestant, nose drops, humidifier, drinking water w/juice added and sleeping in her swing, it will probably be cleared up soon.
Last night she finally went to sleep for mom at midnight. Then congestion got her - and mom - up again at 3am until 5am, when Claire dosed off, and then Claire was up 30 minutes later. With 3 hours of sleep, mom asked dad to get up, and he was only up for about 15 minutes, just clearing her up so she could breathe, and then Claire must have gone to sleep, because mom was up at 6am with her, clearing her nose and giving her a decongestant - she drank a bit more water with juice and finally fell asleep - the poor dear didn't sleep much during the night - but did manage to drink about 3 oz of water w/juice. By 7:30am, mom was getting ready for appt and work and Claire started fussing, mom cleared out her nose and Claire quickly fell back asleep. Claire had her weigh-in at 8:30am, there were still bottles to be made and Claire to be fed.... and after a sleepless night for Claire, mom had to wake her to take her to her appt.
Unfortunately, she only gained 1 oz... or, fortunately she gained 1 oz. Mom had higher expectations, of course, but she did gain, and didn't lose... and given her up and down swings in her eating this week, Claire did well. Dr said to try to get some antihistamine for infants to try to dry up the stuff in Claire's nose.
After Claire's appt, mom took her to daycare and went to work... on three hours sleep and a cup of coffee, mom is ready to rock and roll... hehehe! Mom will get caught up with sleep over the weekend... no problem!
At 4am, Claire was in her swing fussing at Red Dog. Not what mom needed, so she put RD behind the swing, but Claire could still see his head with his little white spot on his eye... so she really fussed louder... mom put a little tissue over his head... but there's no fooling Claire... she kept fussing and focusing on RD, like he'd come out to play on his own... Mom decided Claire had a bit of energy to burn, and didn't want to wake up the whole house, so she let RD down to play with Claire and she kept batting at him like a punching bag. It has been a while since she's seen Claire like that... with real purpose. It seems Claire 20 weeksshe may have been trying to hold him. At one point, she had both hands up in the air, one on either side of him, as if just trying to get him still so she could catch him, but RD doesn't stay still for anyone, and not for a baby who is using him for a punching bag. She was so wound up, mom finally had to put RD back 'away' and feed Claire some more until she finally went to sleep.
She had a nice evening bath and lots to drink when she go home. Mom gave her the
antihistamine at 6pm and it seemed to help Claire sleep well and dried up her runny nose. Claire had a nice bath when she woke up at 8pm, more to drink and back to sleep by 10pm.
Mom's been taking pix, but too busy to add them... she will soon tho!
Monday is Claire's follow up audiologist appointment, and her 5 month birthday!! Next week is also a follow up heart exam.

August 7

 

Claire has had a runny nose and congestion. She did manage to drink about 16 oz, plus 2 oz of water w/juice added, so mom is pretty impressed with Claire's appetite.

August 6

 

Claire had a Hospice and Early Intervention appointment today. Unfortunately, the Hospice lady had a cold, and was hesitant about seeing Claire, so everyone involved agreed to put the visit off until next week. The Early Interventionist saw Claire at her daycare. They will revisit getting Claire a splint for her little left hand next week. She is opening them much better, but still has a finger crossed over that the splint could help with.

August 5
21 weeks

 

Claire isn't eating too well today... it is always worry-some. She just opted to sleep the entire day away, drinking maybe 8 oz of milk today. Her dad says she is just growing, and her mom thinks she needs milk to grow... either way, they feel confident she will bounce out of it, she shows no signs of being sick. (fingers crossed)
Mom got behind on Claire's monthly pix, so she finally took her in. She also took Claire's big sister for her 4 year old pix -- mom is so excited about getting them back.

August 3

 

Claire went to visit her uncle again today and it was lots of fun. It was pretty rainy, so no swimming for Claire today. Her uncle did give his old computer to Claire's sister so she could play some games on it.

August 2

 

Claire's toes in the poolClaire and her mom and brother and sister when to see her uncle and go swimming. This time, her uncle took her to put her feet in the pool. Claire loved it, tho it was very bright out.
All the kids gathered around to see Claire's toes in the water, and her Uncle loved giving her her first pool experience. It was a beautiful sunny day! She always loves going to his home to visit, and now she has one more thing to look forward to!

August 1

 

Claire had a terrific night last night. Her congestion is pretty much gone, so she got to sleep back in her bassinet, with mom's shirt. She slept from 9pm to 9am, when mom woke her up for breakfast. She drank well too, she had 2 oz pretty quickly and another 2 oz at her daycare when she got there.

July 30   Claire 20 weeks after bathShe was fussy most of the night due to her congestion. Her dad tried to feed her around 1am, but she didn't drink. Mom got up around 2am and she drank about 2 1/2 oz. Mom gave her a decongestant and cleaned out her nose with 'Little Noses' saline drops... Claire soon fell back asleep. She got up around 6am and drank another 3 1/2 oz and hung out with mom for a while while mom worked. Then off to daycare.
The decongestant clears her nose so she can drink well, but she doesn't seem to sleep too well with it, but she sleeps even less without it. The congestion last night is surely what kept her up. And mom removed the sleepshirt from her bassinet. She will need to put another one down for her. Grandma said Claire is just like a puppy, sleeping on something that smells like mom -- and a sweet smell too (mom added that part).   :o) She slept in her swing all night, with Red Dog hiding, but watching over her.
Today is Claire's Grandma and Grandpa's 55th wedding anniversary. She loves them so much!

July 29
20 weeks

 

Claire had a pretty good day. Mom started her off with water and a decongestant, by the afternoon her nose cleared up and she was drinking like a little champ. She had 9 oz at daycare and another 5 at home in the evening. She had a total of 5 oz of water during the day.

July 28

 

Claire slept in this morning after going to sleep at around 10pm last night (when mom also went to sleep).
Mom worked from home early in the morning, answering emails for a while, to let her get some rest, but around 9am, mom decided she had to wake the little peanut up - she slept a very long time without eating, but Claire was neither interested in eating OR waking up. Mom had the air conditioning turned up cooler, and turned on the ceiling fan over Claire... but nothing worked... she just kept snoozing (and she's so Claire with finger on lip - asleepcute sleeping, mom really has a hard time waking the little sweet pea).
She looked down at her sleeping and Claire had her finger in her mouth pushing up her upper lip... well, mom had to document that!! ... it was the cutest thing... like she fell asleep while trying to get her thumb in her mouth!
After pictures (lots of flashes) Claire decided she wanted to keep sleeping, so mom made the transition as smooth as possible from bed to carseat. Claire was not interested in eating, so mom whisked her away to daycare. She still has a stuffy nose. By the time she got to daycare, she was wide awake!

July 27

 

Claire is sleeping through the night pretty well. Last night she slept with the humidifier on and mom gave her some decongestant earlier in the day yesterday.
Mom didn't keep track of the oz today. Claire didn't take much of a nap, just hung out and played with mom after church. The weekend was nice and relaxing. She was in her sling for part of it while mom got some work done helping dad with his business cards design and starting his web page design. Starting a new business keeps mom and dad really busy these days. She went to bed around 9pm, after a nice warm bath (she loves bathtime... it is getting out of the bath "bowl" that she doesn't like) and a full tummy.

July 26

 

Claire - big blue eyes - after bathClaire went to bed at 7:30 pm last night. She was so exhausted, she even missed her bath. Mom put her in her bassinet, since she fell asleep in her carseat. She seems to be getting a bit of a cold again... so her little body probably needed the rest.
Dad sang last night (Friday) with is band, and when he got home, mom decided that she needed to wake Claire to eat. She ate about 3 1/2 oz, and then dad put her in her swing to fall back asleep until morning.
She had a total of about 18 oz today.

July 25

 

Claire has been doing well with her new bottle. So well that she has had about 15-18 oz per day. She had a 2-week weigh-in today and is up 6 1/2 oz. She now weighs 6lbs and 14 oz. Only 2 more to go to reach 7lbs! That will be the weight her sister was born at, she will have farther to go to catch up to her brother's birth weight tho.
Claire - holding rings 19 weeksAt her appt today, mom told the nurses about the new bottle... they were fascinated. It would have been good if Claire had been given one to try in the hospital... when she was learning to suck and swallow, for this bottle to work, they just need to know how to swallow, and she was doing that pretty well back then. Since the hospital, T18 moms have told mom about them, but she never had a clue how helpful it would have been for Claire to gain weight. She wishes hospitals had access to bottles like that for new mom's to try and take home. But the cost of only one bottle is very expensive. Even donating the bottles would add up over time.
Her mom was really happy to see that she gained so much and has big expectations for her in the next two weeks. If her thin little legs would just get chubby, she may actually look her age... but mom knows that she never had a 'chubby' baby, so Claire being a chubby baby ... well... it just isn't going to happen.... but a mom can dream... heheh!
This morning she had 3oz before her appt and another 4oz at her daycare by noon. She is a eating, growing little nut!
The last three nights she has slept through the night, going to sleep around 11pm and waking up at 6am, like clockwork. For the last three nights mom's 'sleepshirt' (which mom has slept in) was spread out on Claire's mattress too. Coincidence?... well... dad doesn't care, that shirt is stayin... heheh! Mom and dad wake up in the morning and ask the other if they got up with her... since neither had, they then turn the monitor up really loud, hear her breathing, and then sigh in relief. :o)

July 22
19 weeks

 

Claire was up at 2:30am for another bottle. She had 5 oz, then asleep by 5am (mom was a bit tired all day). It isn't that she took so long to drink, she just was WIDE awake and wanted to play a bit. She slept until 9am and had another 4 oz and a bath by 11am, then 3oz by 2pm. She finally settled down for her nap around 3pm. Mom turned on her ceiling fan in her room... really slowly, and Claire laid in her bassinet watching it until she finally drifted off to sleep with a nice full belly. Mom wanted to join her, but needed to get more work done. Claire seems to really like her new Haberman bottle. By 3pm, she had a total of 12 oz. She reached about 19 oz for the day.
Mom wants to start reaching 20 oz/day, tho that is well over her current goal. Mom can be a bit too ambitious at times.

July 21

 

Claire pix - 4 months oldClaire took her new bottle to daycare and mom showed her caregiver how to use it. She already had 8 oz by 8am, and hungry by 10am and another 3 oz by 2pm. If she can take more formula in, her stomach will stretch and maybe then she will be able to take in more and more and get bigger. Her ped says not to rush her... quick growth could be hard on her heart. But he knows mom wants Claire to look and be normal, and he knows she tires of folks thinking Claire is a newborn... but it all comes with the territory, and if that is the worst think her mom has to worry about, then they must be doing just fine!
She had another 3oz before coming home, and so by about 6pm, she had 14 1/2oz. She went to bed about 7:30pm, and was up again for 1 oz, then for her 3 oz feeding before going to bed at 11pm. Her total for the day was 18 1/2 oz.

July 20

 

Claire is doing great with her new bottle. She went to church this morning and she was a bit noisy. Her aunt thought maybe she was hungry, but mom knew she had just eaten. Lately, mom wonders if, even when she's just eaten, she gets hungry quickly. She was also reaching for her aunt, and trying to grab her. Just then, her daddy said that in the evenings she often grabs his shirt and pulls on chest hairs... ouch... poor dad...
Tonight Claire's family went to her uncle's home and she slept for much of the visit, while everyone swam in the pool. Even her dad and uncle jumped in, and her aunt and mom chit chatted. It was a nice relaxing visit.

July 19

 

Kids with Claire 18 weeks old

Claire's sister had friends over for her birthday party, and her brother went to a friend's house to sleepover.
Today, Claire discovered the Haberman bottle. Her mom was told about it when Claire was first born by Claire and her big sister - 4 monthsother moms on the Trisomy board. Her mom thought it would inhibit Claire's ability to learn to suck, so didn't research it too much. Today, one of Claire's mom's friends mentioned that Claire should try it - and she had one Claire could use. Mom agreed, since Claire has proven she can drink from a bottle, and probably won't forget how, but needs to get more calories in quicker. Her friend brought by a bottle and they tried it out. Claire did very well with it. It keeps air from getting into Claire's tummy from the bottle, and just by positioning the bottle, her mom can adjust how much Claire gets. All Claire has to do is bite down on the bottle, not even suck; tho she still sucks on the bottle. Claire and her mom practiced with it all day, and Claire did really well. Her daddy gave her 4 oz in the evening in one sitting. And a few hours later, Claire had another 3 1/2 oz. Mom wants to see a 'fatter' Claire, perhaps then she will look more her age. :o)
Above are pix of her brother and her sister adoring her... you can see red dog hangin from the swing... that is who Claire adores.... he is her focus.

July 18

 

This morning mom attached some beads to Claire's carseat while mom got some work done. Claire had a big time trying to get the beads, at least she could reach them and had fun trying to grab them.

Claire playing with beads - 18 weeks

July 17

  Claire was up at 2am and had 2 oz. It was mom's turn, but nothing that a cup of coffee can't take care of in the morning. Claire and Red Dog - 18 weeksClaire woke up again at 8am, drank 3 oz and had big fun with red dog (the little plastic toy shaped like a dog that hangs from her swing - you guessed it, he's red). That dog always gets the best of Claire. She sees him, and when she swings, she thinks he's the one moving... she wants that red dog and she swings her arms at him, but she's too small to reach him. This morning, mom put a sweatshirt under her and wow... she could swat at red dog and reach him... but was she happy? nnoooooo... she wants to grab that red dog and put him in her mouth. But she hasn't quite figured out how to do that yet. So she was just plain mad at him. So mad that she fussed herself right to sleep. Mom knew she wasn't fussing from hunger - since she had just eaten, and mom saw that intensity in her eyes, focused on red dog.
She had another 5+ oz at daycare and a bit more when she got home and decided to nap at 7pm. Mom turned down the ac, so Claire should get a lot of sleep tonight (and so should mom :o).
July 16

 

Claire after bath - 17 weeksDad lucked out, since Claire decided to sleep in. It probably helped that mom turned the AC warmer, so around 9am (after constant checking), mom decided it was time for little missy to eat.
Even when Claire "sleeps in", mom doesn't sleep (due to constant worrying and checking to see that Claire is okay - same as any baby).
She drank only 1 oz and was whisked away to daycare. She had 6 oz there and then back home for an IE appt and a hospice visit.
She is slowly meeting goals. She gazes nicely, tho for only short periods of time, until something more interesting catches her eye. She had 2 oz and a 2 minute power nap, then back to therapy. She was actually 'swatting' at toys hanging before her. Mom knew she was doing it all the time (swatting at red dog that hangs from her swing), but now she had witness. Next she will need to grab the toy, and then put it in her mouth. Goals are fun!
The hospice ladies enjoyed holding her and, like her pediatrician, the hospice nurse that visits regularly noticed her heart beat seemingly louder. She may have to visit the ped cardiologist sooner. Here's a pix taken after Claire's bath... her hair is still wet.

July 15
18 weeks

 

Claire drank about 16 oz of formula today. She had a nice time at daycare and a hospice volunteer came by to babysit her and her brother and sister, while her mom and dad went to see a movie.
Claire went to bed at 11:30 pm. Mom had night shift and dad opted for morning shift.

July 14

 

Claire and her sister - 4 monthsClaire had a banner day today at her daycare. She drank 7 oz, after drinking 4 at home when she woke up. She was fussy the whole day tho, so she should sleep well tonight.
Claire hasn't had a fever since the 11th... mom is very happy to report that!
She has been in a routine of getting fussy in the evenings. Mom thinks she is working on some new teeth (imagine... Claire with teeth - how sweet will THAT be!?). But no signs of them yet. Claire's dad thinks her routine is 'fuss until after midnight... then finally go to sleep'. She seems to stop fussing when you put a bottle in her mouth, not that she drinks from it, or is hungry, just likes it there... pacifiers work too, but she seemed to have misplaced her favorite one... and she sometimes falls asleep with the bottle in her mouth. So mom and dad have to move in slo-mo to see that she gets to her bed without much awakening, or it is "start-all-over" for everyone.
Her dad has the 'patting of the back' down and seems to be able to lull her to sleep easily -- at least, he sure makes it look easy! Claire just loves laying with her daddy.

July 13

 

Claire drank 19 oz of formula today. She had a nice nap during the day and enjoyed a nice lazy Sunday. Her cousin and her friend both left today, so maybe that explains her fussiness during the evening.

July 12

 

Claire and Uncle PetersWith her fever last night, mom decided to start Claire's morning off with a little Pedialyte. She seems to like it without flavoring (we used fruit juice) so she's been getting it plain. She had 3 oz, and then started in on formula. She's had 10oz of formula for the day. She is also still on her antibiotics, we are just going to finish the bottle. Claire and her sister had nice naps while mom got to work in the yard for a little while and plant some beautiful flowers that Claire's dad got for her mom for their anniversary. They had company this weekend, a friend of Claire's daddy. Claire loves company, it means more arms to hold her! Her family loves company too, and this particular friend is so well behaved.   :o)

July 11
4 months!

 

Claire is 4 months old today! We are so proud of our little peanut!
Tonight mom took her temp, Claire was very fussy, her temp was 101.9, the highest it had ever been. Mom gave her some Tylenol and Claire's sweet feet - 18 weeks.Claire finally settled down. Her fever didn't come back up.
Claire's mom and dad decided to put her back on the 'squeeze' bottle that she used to use when she was first brought home from the hospital. It makes her feedings go much faster and she tends to drink more before she gets tired. It seems to work well all around, and after her cold, it seems like a good way to get a few more calories in her.
Claire had her 4 month appt and got two shots at her pediatrician's office. Her weight stayed the same as it was on Wednesday. Her dr said Claire's mom and dad were 'pioneers' in this area, having a T18 baby. We are all learning together about Claire and what is like to have a baby with an extra chromosone.
Here's a pix of Claire's pretty little feet... mom thinks everything about Claire is pretty, and, of course, little.... and especially loves those little feet - not to mention they are quite ticklish!

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