Fourth Month
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July 9


In the morning, Claire had a temp of 100 again, mom gave her Tylenol, and her temp went back down. About 4 hours later the temp went up again, and this time to 99.8... mom wanted to wait for it to hit 100 before giving her Tylenol again, and oddly enough... the next time she checked it was 99.2, then 98.6... it came down on it's own. As if Claire broke the fever by herself.
When she broke the fever, she was a bit hungry, so mom offered her unflavored Pedialyte. She drank 2 oz in 5 minutes. The little peanut was so thirsty. She ended up with about 12oz Pedialyte for the day, and around 8pm, mom decided the diapers were full, the fever was gone and the congestion sounded pretty cleared up, so Claire got some milk. Dad fed her 3oz in the evening, and she had a pretty good ending on the day!
One of the things Claire's parents were warned about when they discovered she was T18 was that she may not be able to regulate her body temp... but she seems to be doing well... her first real cold, and she navigated through it fine!
Today is Claire's sister's 4 year birthday and we had a nice party for her.

July 8
17 weeks


Claire's appt was at 10:45am. The office was very busy and on this day, understaffed. So after our 2-hour wait, we got to see the doctor. Claire weighed in at 2 1/2 oz under her last weight (now at 6lbs 7 1/2oz) and the dr couldn't see in her ears but her heart murmur was louder than he recalled. He thought she could have pneumonia, so we had two choices, the first of which he was opting for. The first choice was to go have blood work done and a chest x-ray. The second choice was to put her in the hospital and have them do it. Mom said she didn't mind running around town to get the work done -- anything to keep Claire at home... and he agreed. The blood test was done and showed her body 'fighting' something, likely a virus. And the chest x-ray showed little (which is good) so it didn't look like pneumonia. Claire just caught a little bug. Her doctor is the absolute best!Claire and her daddy He was very cautious, but not panic-ed and he personally called Claire's mom after the blood results were available and before mom left the x-ray office. She is very happy that he is Claire's (and the family's) doctor. He also tells us that he doesn't know much about Claire's condition, but we are going to just learn together.... mom likes that honesty... too many other drs give their opinion and ... well... if they don't agree with mom, then she just ignores them. That's mom for ya' (dad understands that all too well - hehehe).
The dr at the x-ray office was 'tickled' that he was able to x-ray a T18 baby... his first. He even looked up T18 and told Claire's pediatrician, 'do you realize that she is prone to genetic abnormalities?'... the ped told Claire's mom and they laughed, as if they didn't already know about Claire's condition - much less looked it up and researched it heavily.
Claire was also prescribed an antibiotic. When mom picked it up, she also got some Pedialyte and put her on that, and taking her off the decongestant -- mom thinks it kept her appetite away... between the fever and the congestions, it seems like the best thing for her. In the evening her temp rose to 100.4... and mom gave her a dose of Tylenol to bring it down. She slept well, between mom and dad, and mom slept well too, knowing she could just reach over and feel if her temp had gone up again, all throughout the night.
When mom gave her the antibiotic, Claire's little tongue came out and so did the medicine. She seemed to like it, but didn't know what to do with something that was just put in her mouth. Mom decided to put 1/2 the medicine in the nipple of a bottle and stick the nipple only in Claire's mouth... as she sucked and the medicine went down, mom added more to the nipple... it has worked quite well so far... Claire takes all her antibiotic (she loves the flavor) and doesn't spill a drop... just sucks it right down like she was drinking from a bottle.

July 7


Claire went to her daycare, and mom got a call that she had a fever, so she picked Claire up and watched her for a few hours to see how she was doing... her temp didn't go up again during the evening. Claire was still very congested and didn't want to eat much, so mom decided it was time for a visit to Claire's pediatrician. We called and got an appt for the morning.

July 6


Claire had a pretty good day. Still congested. We had a nice morning with grandma and grandpa and then headed back home. They are always so much fun. Claire was up with her daddy for a long while and mom tried to get some sleep, something that she hasn't been getting much of lately, but going to work on that.

July 5


Claire hung out with her aunties and her grandma, while mom and her other aunt took some of the kids to the beach. It was a beautiful day there, and not very crowded at all. At home, Claire slept and slept and aunties didn't have the heart to wake her, so she didn't eat much. We went to church in the evening and then to dinner with everyone to celebrate her aunt and uncle's anniversary. It was a nice evening, we had at least 20 people, so it was just a nice big party (that someone else had to clean up after - hehehe).
At the restaurant, Claire threw up once after 2 oz, and again later in the evening after another oz. It seems that her congestion has created a lot of flem in her throat, and it seems to gag her. She had a bit more decongestant and slept next to mom in the bed all evening. It was good for mom to have her so close but meant little sleep. Mom was a bit stressed about Claire's low intake, but took some comfort that Claire had eaten so well the day before... perhaps because she had decongestant the day before, was cleared up and could breathe well enough to drink all she wanted.
Here's a pix of Claire's cousins and friend who was visiting from Michigan.

July 4


Claire ate so much. She woke mom up at 5:30 and by 7am, she had 4 oz. Then they both went back to sleep for an hour or so. Her eating slowed up during the day, but in the evening, in the fresh air watching fireworks, you couldn't feed the little peanut enough food... It was a beautiful night, and we spent in on her uncle's rooftop watching fireworks from various cities all round... in all directions but one (it was rather dark over the ocean).
At one point, she was crying for more food... and poor dad had to run down and get more... everyone was remarking at the loud crying (well, loud for her)... and the fussing... she had a total of about 20 oz during the entire day... again, well over her 16 oz quota. Dad got a break from mom's family, he took a day trip and went down to see friends and family. They live a couple hours south of grandma's home.

July 3


Claire enjoyed a nice long car trip down to see her grandma and grandpa. About 4 1/2 hours worth (made longer by a 30 minute traffic tie-up). She slept most of the way, like her brother and sister. She always enjoys riding in the car and snoozing only to wake up and see her aunts and uncles fighting over who is going to hold her.

July 1
16 weeks


Claire woke up quite congested, but still drinking well. She started her day with 4 oz, and mom decided to keep her home so she could get over her little cold. Around 1:30pm, she drank another 4 oz, and then around 6pm, she had another 2oz. Unfortunately, during her feeding, mom was called away, as Claire's sister bumped her head and it required ice. Her sister likes to walk around with a blanket over her head (gets that from Dad's side of the family) and often doesn't see where she is going, and tends to bump into things... this time it was something that hurt... alot. Mom and dad were going out for their wedding anniversary (14 years) and so Claire's caregiver (who didn't get to take care of her during the day) came over to watch the kids. Claire had another 2 1/2 oz, then when mom got home, around 10pm another 2 1/2 oz. And then another 2 oz around 11pm... Claire was very fussy... and the only thing that seemed to calm her down was a bottle in her mouth, and since mom didn't want to see it all come up again, she started giving her water after the 11pm feeding... Mom put Claire in her swing shortly after, and turned on the lights and sounds for her... and Claire was fascinated (which was neat, since the lights and sounds usually tick her off)... she really enjoyed it and eventually was trying to get the little red dog with both hands... mom eventually had to turn it off, as Claire clearly wasn't looking tired, and she needed to be tired. By midnight, Claire was yawning... and swinging and around 1:30am, mom woke up next to her and decided to turn off the swing and go to bed. Dad also found out he passed his real estate license test, so he was very happy and didn't seem to mind (too much) getting up with Claire at 4am for another 2 oz. Altogether, Claire had at least 18 oz of formula, and went well over her 16 oz goal for the day. Today is the first day she is on full strength 'Advanced' Isomil - which is soy formula with breast milk additives. (Before today, we were mixing regular Isomil with Advanced).
Her congestion seems to have gone to her chest and while she has a nasty sounding cough, she can at least breathe and drink at the same time.

June 29


Claire slept a lot today, and drank a good amount, about 4 oz every 6 hours on average - but it still takes her about an hour to drink 4 oz - she just likes to take her sweet time -- she learned that from her brother and her grandpa.
She was very congested last night, so we had the humidifier on in her room and she was in her bassinet sleeping... and snoring. She also snored during church, but with the little boy acting up behind us, no one really noticed.
Mom was working on setting up Dad's computer for his home office and Dad played with Claire and kept her busy between her naps. She had about 2 oz of water with a splash of juicy juice for flavor and she liked it, but was very fussy later in the evening, perhaps gas from the juice. Maybe the splash was a bit too much; mom will put in even less next time. Claire was up with her daddy until about 1:30am when she finally settled down and went to sleep. Mom woke her at 7:30am to eat... she looked up as to say, "Hey, what the heck... can't you see I'm sleeping here?!"
A fairly productive day, tho it rained for most of it, Claire was in her swing and appeared to be 'batting' at the red bear that hangs down. Couldn't tell if it was in her way, or she was really trying to reach it. But mom will declare it as a milestone and be proud!

June 27


Claire had 4 oz around 6:30am when she woke up. It took her over an hour to drink it all, but mom was so proud. She didn't drink much last night, so she made up for it. Afterwards, she slept while mom got ready for work. When she woke up, she was so ready to play, so mom played with her for a while - moving Claire's arms and legs and making lots of noises. Then, off to her daycare and Claire's caregiver was very anxious to play with her. She should get lots of attention today. She has been so alert and 'busy' lately... more waking time and learning time.
At her daycare, she had another 5 1/2 oz, then another 4 oz feeding in the evening.

June 26


Claire had 3 oz around 6:30am when she woke up. It took her a while to drink it, and she had another 2 oz at her daycare. Another 3 at home. She had visitors from Hospice in the afternoon, very nice ladies, who brought her a beautiful quilt. Later, a Hospice volunteer watched Claire while mom and dad took her brother and sister to see Finding Nemo.
Nemo has a 'small' (underdeveloped) fin, guess you can say Nemo is a special needs fish. A terrific movie... just watch out for the shark - mom worried about the kids seeing it, dad said, 'the shark isn't real' - heheheh - actually she was just worried about the big screen filled with a shark -- that talked. The family jumped out of their seats when it came up. Claire's sister got a bit frightened, but generally loves to be scared -- like watching the "green scary witch" (over and over) from the Wizard of Oz.
Claire slept the whole time her family was at the movies. It was a good trial run for the volunteer, who is a nurse, to see if she would like to care for Claire more in the future. Mom is a bit nervous about babysitters watching Claire, so this was a good trial for mom too.

June 25

Claire had 3 oz around 6:30am when she woke up. Another 5 oz at her daycare. Her caregiver is doing very well with her. When we got home, we had an appointment with the Early Interventionist (EI) and Claire was able to get a few more milestones checked off her list. She was able to gaze and follow an object to her left. She also reached out for an object and her thumbs are sticking 'up' and that is the first part of her learning not to clench her fingers. The gloves that were prescribed for her were mostly to help her hold her thumbs out. She never got them and mom wants her to learn without them. The IE said it was very possible, noticing the thumbs.

June 24
15 weeks

Claire had 4 oz around 6:30am when she woke up. It took her about an hour to drink that, but we are going to work with the EI to get that time down so mom can get to work earlier. She had a nice nap while mom got ready for work, and dad stayed in bed, he is a bit under the weather today. She went off to daycare again, arriving before 9am.

June 23

Claire slept in a little bit this morning, but woke up in time to say good bye to Grandma and Grandpa, as they had to get on the road early to avoid afternoon storms. She had 4 oz around 8:30am when she woke up, she finished them around 10am (took some time out for kisses goodbye).
She went to her daycare this morning and had another 4 oz, then 2 more before she left. At home, she had another 3 oz, then bath and bedtime at 9pm. Up again at 11pm for 2 more oz and stayed awake until 1:30am with dad, then mom got up to burp her at 2am, and everyone finally got some sleep.

June 22

Claire had a nice relaxing day. She had a good nap after church and playing while at lunch at Applebee's. Mom had a nice 2 hour nap as well, then off to her uncle's (and now aunt's) home to watch the kids swim and spend time with family still in town. She fell asleep on the way home and missed her bath, but slept from 9:30pm until around 4am. This was after a 4 oz bottle. Her 4am feeding was about 3 more oz.

June 21

The longest day of the year, and Claire's uncle took full advantage of it. He got married! It was a beautiful ceremony, tho Claire felt the need to fuss during some of it. Mom was busy, so Dad watched Claire and held her for part of the ceremony. Afterwards, it was off to her uncle's home to a pool party reception and while Claire enjoyed being outside, it was rather hot, so mom made her go inside to stay cool and drink more milk.

June 20

This morning we were off to the Neurologist for our appt. When we got there, they said our appt was cancelled, but would fit us in asap, and were wonderful about that. We only waited one hour before they saw us, and meanwhile got Claire's measurements out of the way... they are all such nice people.
The pediatric neurologist met with Claire and looked her over. She was rather tired and trying to sleep. He said that we needed to watch for seizures and told what to look for, and said she was a bit weak and didn't have much muscle tone. Mom wasn't too happy with that diagnosis, since she knows Claire has rolled over and will kick very hard at mom's stomach til she almost falls out of her lap... On the other hand, mom knows that Claire does have Trisomy 18,14 weekw/3 months and that she is probably weaker than a normal baby for her age and even for her small size and often forgets. And mom knows that she is in some denial, which probably gets her through a lot of these dr appointments. She doesn't feel that Claire will leave us in the next month or so... neither does Daddy, but at the same time still understands the seriousness of having Trisomy 18. As a result, mom is reminded of how she is blessed with every day they have together. Mom knows the neurologist took into account that Claire was almost half asleep when he looked at her. He said he's never seen a T18 baby who has lived past 6 months... but hey, he'd never met Claire before, or see a prognosis from a Geneticist like Claire's prognosis for a T18 baby before either!

June 19

Today, we had the Early Interventionist(EI) meet with us. She is a wonderful nurse who it going to assess Claire and decide what goals we need her to meet. Right now we decided on getting her to eat faster, roll over and open her hands. Mom has been rubbing the back of Claire's hands and they are responding and opening more and more each day. The EI nurse will be back on Tuesday next week and she will work with Claire more. At this time, we want her to get to know Claire and working with her a while before getting Occupational and Physical Therapy (OT and PT).

June 18

14 weekw/3 monthsThis morning, Claire had her weigh in. The nurse said she is looking good and she has gained 3 1/2 oz. Mom really thought she'd gained at least 8 oz, but perhaps just wishful thinking. She does seem to have gotten stronger and since she's moving around so much (burning off those calories) and she is awake more, she may not gain as quickly unless she can pick up her milk intake. We will be working on that!
Claire also got her 3 month pictures taken. Mom will post them as soon as she gets a moment, but with her brother (Claire's uncle) getting married this weekend, she will be busy for a little while. She is planning a big breakfast for family on Saturday morning (about 30 people)! Mom and Dad sure like to have parties!

June 17
14 weeks

Mom has done some research, asking questions of her new friends who happen to be moms of surviving T18 parents. She found out that many T18 babies have had hearing tests only to fail and have hearing aids put on. Then, around 2-3 years old, they pull off the aids and even annoyed so much they bite at them, and moms retest to find out their toddlers are hearing fine. As if their hearing was always there, just blocked because of the tiny ear canals, which just needed to be given time to open as the child grew.
I think it would be good for Claire to learn sign language too. Of course, as her daddy pointed out, we will have to learn it too... a small sacrafice to know how wonderful it will be to be able to talk to our little person until her 'hearing comes in'.

June 16

This morning, Claire had her audiology appt. The dr stood behind her as she slept and clapped his hands (three times, loudly) and she just kept on snoring. I teased him that he didn't clap loud enough (when clearly he did), and he commented that his hands hurt. He was a very nice doctor.
He tried to look at Claire's ears, but the canals are too small, so the state of Claire's hearing is still inconclusive. We go back in 2 months for a recheck.
Claire's daddy sings... and is very good... her mom, on the other hand, is usually off key, but loves to sing, and loudly! She told him that she had sung to Claire and when she was done singing, Claire smiled... Claire's dad said,
"well, that proves it... she CAN'T hear'... mom and dad both laughed pretty
hard! :o) Mom is okay with her singing limitations.

June 15

Claire's family went to church for Father's Day after dad had opened some nice presents. We made muffins for him for breakfast and let him do whatever he wanted for most of the day. We went to a pool party and had a nice time with new friends, and then back home for bedtime. Claire had her bath and bottle and was sleeping by 9pm. She was up again at 12:30am and dad gave her 2 oz, but she wasn't quite asleep, so mom gave her another 3 1/2... but she didn't want to sleep. The room was warm, but she kept staring at the nightlight, so mom blocked the nightlight and tucked in the collar on the pajamas she was wearing and Claire instantly fell asleep on her mom. Mom snoozed off for a second or two also. That was a nice long feeding, mom got to bed around 3:30am.

June 14

We had a busy day, and Claire took it all in stride. In the afternoon, Claire's sister got to go to a tea party for a friends birthday, so Claire hung out with the boys. In the evening, her mom and dad got to go to the Eagles concert with lots of friends... a well enjoyed evening out. Claire's caregiver came over and watched the kids and Claire had 8 oz while mom and dad were gone!

June 13

Claire's mom got to go to a wedding shower in the evening, so Claire's daddy watched the kids. Mom had a fun time, especially knowing Claire was in good hands!

June 12

Claire slept for about 5 hours, woke up and guzzled 3 oz. She seemed hungry still so we offered her more, but she didn't want it. Seems she had a burp... and it was a small burp. Once it was out, it was Goodnight for Claire... she fell asleep in the sitting up/burping position on her mom's lap. That was 5am, and at 8am, she was up again - 2 oz.
Claire's mom has a new theory... she thinks that when the ac in her home is set lower (cooler), Claire eats really well and doesn't sleep as well, and when it is set higher (warmer) she tends to sleep more and not eat as well.
We turned the temp warmer last night, she slept really well - about 5 hours. The night before, when it was much lower/cooler, we couldn't feed her enough.
So now the question is, do we want her to sleep through the night (and keep the temp lower) or do we want her eating a ton and not sleeping for long periods of time (if mom's theory proves correct)? A good question for the pediatrician... you may think, 'well, find a happy medium'... but what fun would that be?

June 11
3 months!

Today, Claire is 3 months old and time to plan her 3 month sitting with the photographer (mom always brings lots of coupons). We couldn't be prouder of our little fighter... we are truly blessed with our precious little bundle and perhaps her brother and sister are finally getting used to the idea of having a little sister around, even if it means mom can't jump up and get them whatever they want at any given moment.
Last night, Claire was up at 12:30am, and her daddy worked with her to get her to drink 3 oz. He said it took her a couple hours... but he was happy to do it, he loves her so. Then, around 2:30am, mom's turn, Claire drank 3 1/2 oz in 3/4 hour (mom is always trying to "one-up" daddy). Then at 4:30, Claire was fussing and mom was still awake, and excited at the thought of Claire drinking another 3 oz... but she only drank 1 1/2. Seems Miss Claire just wanted some company and just sat in mom's lap staring around the room and trying to figure mom out (something dad is still working on :o). Dad got up with her at 5:30am, she had another oz, and then more around 7:30am with mom. Guess we are experiencing a little growth spurt! Grandma will be so proud!Claire in her sling - 3 months
At her daycare, Claire had lots too. Her caregiver couldn't believe how much she had eaten, about 5 oz since she had been there (approximately 5 hours). In the evening, she had another 3+ oz when she got home. In the evening she had bathtime, a little nap in the sling so mom could hold her while she cleaned up a bit around the house and worked at the computer, and then a couple more oz and off to bed. Claire slept great.

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