September 10

Claire is doing so well! She drank well today - 16oz She went to bed around 10pm and was up at 4am hungry. She had 3 oz and went back to sleep!
She recently started crossing her legs... it is the cutest thing, but probably not something the EI would approve of... she likes everything straight... head straight, arms straight, etc. Mom is working on straightening the leg when she is feeding. Claire also needs more tummy time, she hasn't been getting enough lately... and she needs to be using her 'carpal tunnel' splint more. Mom thinks it is because of Claire's late nights working on her website... the EI says she just needs it to get her thumb to come out from the other fingers more...

September 9
26 weeks

Claire is having a big time... she drank okay today - 12oz - and is gearing up for her 6 month birthday party! She went to bed around 10pm and was up at 3am for her breakfast!

September 8

Claire appears to be back to her old self. She is eating very well -- today she is very wide-eyed and alert.
She went right to sleep as mom rocked her - around 10pm, and stayed asleep in her bassinet until 2:30am when she got up for a couple of oz and then back to sleep by 4:00am until 9am. She hung out in her swing for most of the day, dosing in and out and eating often. She doesn't seem to sleep as hard as when she has the oxygen running by her.
Claire drank 18 oz of formula today. Mom and dad are mixing 1/2 Neosure and 1/2 Isomil (both Advanced formulas).

September 7

Claire came home from the hospital today. The drs asked mom what the family wanted to do, and decided that they would get the oxygen at home for Claire to have 'blow by' oxygen at night as she sleeps. She had done so well without it for the past few days, only having it when she was in the crib -- which wasn't all that often, just when she slept. Even then it was on the lowest setting, and just placed next to her face.
The drs agreed and since, during her past 2 days, her O2 levels always came back up on her own, the family opted not to bring home an apnea monitor.
The Neonatologist put her on NeoSure formula, at 22 calories per oz (vs the typical 20 calories per oz), so Claire can get 'bulked up'. :o)
Hospice had the Oxygen Concentrator delivered and set up before Claire arrived home. This cool machine blows out oxygen. Mom was thinking she was going to be sent home with tanks that needed refilling. This is much easier, but pretty loud.
During the hospital stay, mom was with Claire 24/7 and Dad took care of Claire's brother and sister. It was very welcoming for mom to be home and the family together again!
Claire drank 15 1/2oz of formula today.

September 6

At 3am, mom was exhausted. Claire hadn't slept but maybe 30 minutes the whole evening, so mom asked the nurses for help. Unfortunately, they were very short staffed, but offered to take her to the nurses station so mom could get a bit of rest. Mom felt bad for asking, but knew she would be useless if she didn't rest. Claire had 5 1/2oz since 11:00pm that night, so mom was a bit worried that she would throw it up... remember her overflow valve tends to kick in. And mom was a bit concerned about her O2 levels, but knew she was in good hands, and let them watch her.
When mom woke up around 7am, she noticed Claire had a new outfit on. She also noticed that the O2 was blowing very close to Claire's face, as if she had dropped. So mom was concerned, and had no idea how much Claire had to drink.... so she quickly called the nurse to see what had happened.
Evidently, the nurse who watched Claire was a very wonderful NICU nurse. Mom doesn't know her name. She took Claire, bathed her (explains the change of clothes) and bundled her up tightly, as they do with newborns, and had her until some point when she brought her back to bed... put the O2 next to her so she could sleep well, perhaps after Claire had fallen asleep... since mom didn't hear fussing. It was nice for mom to have someone to take care of her, and she would like to thank that nurse.
Late in the day, the IV was taken out of Claire's arm. And mom was hopeful that she would be 'released' soon from the hospital. The drs decided she could go home tomorrow... she was only on monitors, her seizures were not noticed since the first day she was admitted to the hospital, and she was pretty consistent with her O2 levels.
Claire had some fun visitors today, including her aunt who brought mom some fruit and magazines, her friend who brought Claire's mom a chicken sandwich and a frosty (YUM!) and her uncle and cousins (and a friend too) who brought mom some candy bars. (Mom requested chocolate! :o) Everyone had to rush out soon as it was College Gameday!
Claire drank 16 oz of formula today.

September 5

By 10am, Claire had 10 oz of formula.
By 2pm , Claire was taken off the O2, and only had blow by (where they put the oxygen tube next to her so the O2 blows by her face - even put a paper cup on the end of the tube so it would control the flow better). She did very well on her own. The monitors show her levels dipping every now and then, but the monitors weren't always accurate, and she pulled the numbers up on her own every time. What a tough little baby you are Claire!!
Today we were put into a 'regular' pediatric room (moved from the Pediatric ICU). Mom finally took a shower (yeah mom!!... but maybe a bit too much information here!) since there were no showers or beds in the PICU. Mom slept in a recliner - with lots of pillows under her bunnies... a big change from the room at WDW -- eh Mom!?
Claire drank a total of 19 oz of formula today.
Notice the angel bear in this picture. It is the one that was given to her at the NICU when she was first born and you can compare it to her size in the very first pix appearing in her journal on the first entry (on the day she was born) when the bear looked about the same size as our little Claire 'Bear'.

September 4

September 3

Mom planned on staying home again today, and working on Claire's eating habits. Claire had been up all night - every night, pretty much for the past week. Her schedule included a power nap around 6pm, and then up until 2am. Fussing, but not necessarily eating much.
Around 10:45am, mom noticed Claire didn't want the bottle in her mouth. Her little tongue kept pushing it away. Mom decided to squirt the milk in her mouth and Claire would swallow. Deciding it was better than fighting with that tongue, mom kept squirting and Claire kept swallowing. Soon, mom noticed that Claire would stop swallowing with milk in her mouth. Her little eyes would close a bit, as if she was falling asleep, and after about 30 seconds, Claire would wake up. She did this every couple of minutes... and mom started noticing a little pattern.
Claire's eyes would close a bit and then start to twitch, then she would 'sleep' and her arms would move just slightly, as if to tighten up. The signs were so very subtle, and the first few times mom would just watch her for more of the pattern.
They had an appt with the Pediatrician for later that day, mom wanted to have Claire weighed, but she called back around 11:00am and told the nurses what she was seeing and asked if it was a seizure. The nurse said to go to the emergency room, where they could run tests on Claire. Mom and Dad took Claire to the 'not-so' emergency room. It took a while for them to get to Claire, and meanwhile, she had one more sign... she was starting to turn blue around the nose and mouth with each 'eye twitching' pattern. This sign was not so subtle, and when they finally got 'in' to see the triage nurse, Claire was rushed to get her some oxygen.
Around 11:45, we saw the triage nurse, she was terrific... the problem was getting to her quickly. Claire made it in time.
She became pink instantly (and stayed that way since). She had an IV and some medicine to sedate her so she could get a CAT scan done on her little brain, and later an EEG test on her brain too. She had a chest xray done and they gave her some seizure medicine which she started taking regularly. It took a while for her to 'come out' of that, but mom had faith she would. She stayed on the oxygen for the day; to be sure she would be fine. Often the sedatives can be harmful in that a person can be so 'deep' that they could forget to breathe, so it was precautionary, and Claire's O2 (oxygen) levels dipped a few times.... so it was a good thing she stayed on it until the sedative wore off.
All in all, they took very good care of little Claire. It was all so very scary. And this is a lesson once more on the value of life, and how Claire's life is still uncertain... it was a firm reminder.

September 2
25 weeks

With all the running around, and Claire not eating as well as mom would like, mom decided to work from home, and work on Claire's eating. Claire was up to about 11 oz a day, not at all what mom wanted. It was a nice relaxing day, but still mom was a bit worried about Claire's eating.

September 1

Claire's family left WDW after touring a few other hotels -- her brother and sister enjoyed checking out the pools. They went back to Claire's aunt's home and met up with Claire's grandparents and her Uncle and his crew. It was very relaxing, they ate roti and bbq chicken with all the fixins.
After a nice visit, and Claire did well drinking, they headed back home, knowing they would see the grandparents again in a few days as they were coming to see Claire's family the very next weekend.

August 31

The heat was really getting to Claire today - but she was a real trooper. Mom made sure she had plenty of cool air and milk, some water too every now and then. There were some nice places to get away from the heat, Claire saw the Country Bear Jamboree, she went through the Haunted House and the Pirates of the Caribbean, all in her sling. Clair also enjoyed her bottle as everyone had a nice lunch in a cool restaurant. She also went back to see Minnie Mouse and Chip and Dale, for more photos. Mom remembered the video this time, so we had to get some of Cinderella.
Fairly early in the afternoon, Mom and Claire's aunt took Claire and her sister back to the hotel and everyone was bathed, had dinner and got ready for bed.
WDW in the summer is not recommended. The sling worked out great, but still rather warm for Claire, and everyone knows that when Claire is warm, she isn't eating well. Our next trip will be in the wintertime.

Claire had a pretty good day, everyone packed and went to Orlando to spend the night with her aunt before getting an early start at Walt Disney World (WDW).
Claire's brother and sister have been planning the trip for a few weeks now and are just beside themselves. Her sister has big hopes of meeting Cinderella, and her brother is just excited about the hotel.
Claire got into Orlando a bit late, with her family of course, and since she slept most of the way, she was up a good bit of the night... mom was a bit exhausted for the big venture, but so excited even she couldn't see straight. The anticipation was great!

August 28

Mom decided to keep Claire up starting at 4pm. She had her bath and played with the kids and ate about 6 oz in 2 hours (which she threw up, mom fed her too much at one feeding).
Around 10pm, she was teasing mom. Mom put her down because Claire was so tired, and in 10 minutes, she was up again. Dad took over and fed her another 4oz and finally got to bed at 3:30am. Mom and dad have a big weekend planned for the kids, so they really hope Claire will get back on her schedule soon...

August 27

Claire did a bit better than expected last night. She went to bed around 10:30pm like her mom, but must have gotten up later, cause dad said he was up with her until 12:30am. Mom didn't hear a thing.
Mom reminded dad of the days when Claire was up, not crying, and how we took that for granted (2 days ago).... he laughed!
Claire slept from 12:30am until mom woke her up at 7:30am to go to daycare. She got her heart meds and dad swept her off to school.
Mom hasn't heard from the Audiologist or the Pediatric Cardiologist. She could call, but know if there was anything really important, the would call her... and make another appointment. Mom wants a break from appointments for a little while.
Claire went with mom to Parent's night at the kids school. Claire's uncle watched her brother and sister so mom could go and dad could go sing.
She slept through the whole thing (Claire, not mom) and mom was very pleased, except that when they got home, Claire was well rested. Dad had a lot of work to do, and couldn't take over at the 10pm feeding, so mom stayed up with Claire... until 2:30am. Then, after sleeping a few hours, got up to get the kids and dad off to school and got ready for work. Don't worry about mom tho, she snuck in a 2 hour nap!

August 26
24 weeks

Claire is still miserable.
Mom called the dr to see if there was anything she could do for her. He suggested 1/4 tsp of Motrin every 8 hours. She had some when she got home, after crying most of the day at daycare, and it seemed to make an angelic, cooing baby out of her... for about 1/2 hour... then back to misery.
Mom thinks Claire is working on teeth. She read that it could take months to get teeth in, and that is unfortunate, since Claire doesn't take too well to this whole teething business. She isn't able to just grab a toy and stick it in her mouth. She has been using the bottle for teething and biting down on the Habberman only makes milk squirt in her mouth. Needless to say, her eating is up considerably... She had 11 oz at her daycare today! She totaled about 17 oz on the whole day.

August 25

Claire has not been a happy camper. Last night, actually this morning, she had decided (again) that 1am is her bedtime, so mom went to sleep around 10:30 and left dad with a crying baby, and she gets up again around midnight to relieve him so he can get some sleep. Mom pretty much doesn't get a lot of sleep, but knows that one day she will look back on all this and miss those long nights.... yeah, whatever!
She had 9 oz at her daycare today! She totaled about 16 oz on the whole day.

August 24

Claire had big fun at the beach.
She spent all her time snoozing under the beach umbrella. It was a bit overcast (cloudy) yesterday, and the nice cool breeze blew her long hair as she slept.
Today, she slept under her umbrella again, but it was sunny out, and she ended up with a bit of a sun 'tan'. She had big fun, while her brother and sister played on the beach with their friend, and mom and dad hung out under another beach umbrella and got caught up with friends also. A very relaxing weekend.
Her dad's band played last night on the island, so everyone went to hear them for a little while and have dinner. Claire slept through some of that too, only to stay awake this morning(Sunday) until 1am. She forgot mom was going to wake her early in the morning so they could go play on the shore.
All this fresh air made for a very hungry peanut!
Claire had some cool sunglasses for the pix, but didn't want to wear them for her nap. T18 babies tend to be sensitive to light, so perhaps the brightness made her keep her eyes closed too. But she was definitely snoozin'!

August 22

Here's a pix of one of Claire's friends holding her at the beach, where we went for the weekend. Claire slept until 6am, when mom woke her to start her 'sleep deprivation' for her ABR (hearing) test. The test requires her to sleep through the whole thing -- about 2 hours (tho today's testing lasted for 3 hours, and was only one ear - her right ear). Claire had her weigh-in before her hearing test and lost 3oz (now at 6lbs 12oz), but mom actually thought she could have lost more, with all her problems of the past week, and probably gained a few oz back in the last day or so... no telling. Mom knows Claire is feeling better and will gain a bunch as long as they can keep her healthy. Claire always seems to be a 'new and improved Claire' after her colds. She just seems to enjoy drinking more and is even passionate about it... she is so much hungrier and sleeps so much better...
Her hearing test seemed promising. The audiologist (who isn't a dr) said that it looks like she could benefit immensely from a hearing aid. And that is promising to know that Claire may actually hear. She said that her low end hearing is conversation level. She said that our conversation level sound is like a whisper to Claire. Mom laughed because there is no conversation level at Claire's house. Her brother and sister don't know how to talk at conversation level, so it seems that Claire probably hears everything at home just fine. :o)
She drank a total of 4oz formula and a few more oz of water during her testing, then off to daycare where she guzzled 3oz in one sitting.
After daycare, mom and dad took the kids to the beach for the weekend, where they met friends and spent a beautiful weekend at a beach house on an island.

August 21

Claire slept until 6am, and by 8am she had 4oz in 'one' feeding. Mom let her sleep (like she could wake her if she wanted) and then they went to the echo appt to look at Claire's heart.
At the appt, Claire went through 2 diapers and drank another 2oz. The tech seemed to think her 'numbers' were close to those from her echo at 1 month. Mom will wait for the dr's call before getting her hopes too high...
At daycare today, Claire drank another 4 1/2oz, came home and slept it off. She's at 10 1/2oz for the day, and hasn't had dinner, or midnight snack, yet!    GOOOo Babbbbieeeee Claire!
Claire had 5 oz before bed, one feeding, and slept for about an hour before she woke up. Her daddy stayed up with her until 1am.

August 20

Claire woke up at 3am with a little noise and was probably just talking in her sleep, but mom decided it would be in Claire's best interest to feed her, so she woke her and got her out of bed and they watched some early morning tv while the little pixie ate her early morning snack... about 3oz.
Mom still has to feed her slowly, tho she is drinking pretty quickly, mom doesn't want to see the milk again, so is very patient and giving Claire 10 minute breaks in between ounces. So the 3am feeding, tho Claire drank rather quickly, went until about 4am. Mom didn't mind, Claire was drinking and sleeping and that is all that matters at this point!
In the morning, Claire drank 3oz and took another nap. Then when she woke up later, she wasn't too interested in drinking, so she went to daycare and drank another of 6oz during her care. At 12 oz for the day, she's already beat yesterday's totals.
In the evening she had 2oz, and mom put her on the bed so she could get her bath ready. By the time she came back, the little peanut had fallen asleep, and since it was around 9pm, mom decided to put her to bed, where Claire snoozed until 11pm when dad picked her up and gave her 1oz, and she went back to sleep for him.

August 19
23 weeks

Claire decided she was going to be up all night... and most of the morning. She had a nice warm bath and lots of formula, then sounded congested, so she decided to have some pedialyte to top it all off. She slept for about 10 minutes and was up... until 3am.
By 11pm, Claire was still fussing. She settled down some, only to cough and throw up her dinner... mom was pretty tired, so dad took over. At 1am, he was exhausted, so mom, after 2 hours of sleep, took over. Claire was just so fussy, and only happy with a bottle in her mouth, but not drinking. Finally, around 3am, she drank 2 oz about as fast as mom has ever seen, and went out like a light. Mom put her down in her bassinet. During her waking hours she had decongestant and mylacon (for gas), since mom couldn't quite pinpoint the 'cry'... perhaps they finally kicked in too.
Unfortunately, we all ended up oversleeping. The alarm came on at 5:30am, then it went off again at 6:30. Mom thinks it is time to turn the alarm up louder! Everyone (except Claire) got up at 7am and the house was hectic trying to get the kids out by 7:30. No one got out at 7:30, or 7:45 for that matter. But in hindsight, mom did get about 6 hours of sleep, so oversleeping for her was a mixed blessing.
At 8:00am, Claire was still sleeping, so mom got some work done and woke her up to go to daycare. Claire drank about 4 oz at daycare, and another 3 when she got home.
In the evening, Claire seemed back to her old self. She had a nice bath, drank almost 4 oz, and drifted off to sleep around 9pm. Mom was so giddy, she didn't know what to do with herself! :o)

August 18

Claire had a pretty rough weekend, but seems to have bounced back just fine. She was congested a good part of it, and when she would drink milk, the congestion in her throat would make her gag, and she would cough up all her formula. Mom decided to put her back on Pedialyte for a while, and she drank that really well, and kept it down, so it was probably the congestion.
Unfortunately, the Pedialyte didn't 'stick' with her long, so she was hungry every hour, and mom was up every hour on Saturday night.
Yesterday, she seemed quite rehydrated and back to her old self, so she started back on milk and kept it down until about 2am, when she was fussy and not sleeping. Mom tried giving the decongestant, but Claire gagged on it and it came up along with some sour milk from her tummy. It was just a tiny bit of milk. As if she had a stomach ache. Once that came up, she settled down and slept the rest of the morning, with some occasional coughing. She slept in her swing next to her mom's bed. The humidifier was on in the room too.
Claire drank 5 oz at her daycare, and another 3 at home plus about 3-4 oz of pedialyte during the day.
She doesn't eat as well as mom would like, but mom is optimistic the cold is the reason, and when we finally kick it, Claire will have her appetite back AND be able to keep her food down more consistently.

August 15

Claire had some not-so-good news today at her Pediatric Cardiologist appointment today.
Evidently, her hole (ventricular septal defect - VSD) in her heart may be bigger than originally thought. While it is not believed to be gigantic, it has been upgraded from small/tiny to medium in size.
When she was one month, and the drs had looked over her heart, they had an echo done. The echo measured the pressure in the heart chambers. When she was small, the pressure in each chamber was similar, so the hole seemed smaller. Now that she is (a bit) larger, her lungs have become stronger, and the pressure has increased in one chamber - feeding blood to the lungs, so the echo will probably give us different, more accurate results. Since she is a trisomy, it took her longer to develop the lungs - at one month, she was still so very small.... and so the murmur seems louder now and the hole can be evaluated better. Claire goes in next week for the echo to find out more information.
In the meantime, her dr. recommended two medications for her. They will help her lungs to be less 'stiff' due to the extra blood flow to them, and she should be able to breathe easier. This could also help ease the cold symptoms, and perhaps help her sleep better because she will be breathing better. Mom had to find a pharmacy in town that even carried these meds, evidently the aren't just at any pharmacy, and they would have to have waited until Monday to get the prescription filled, but one pharmacist was kind enough to call around for them.
Claire's ped cardiologist also wanted to do an xray, but fortunately, she had one done just last month, and he said that would be good enough, so he was able to use those chest xrays. The xrays showed an enlarged heart, but her dr said it wasn't a big concern.
Whew, mom and Claire had such a long morning. But nothing seems unconquerable... and that is fine with us! They have great drs who are watching Claire so closely and keeping her so comfortable.
Claire has been chug-a-lugging her milk, but drinking so fast, and having so much gunk in her throat, that she sometimes coughs, chokes and then throws it all up. Mom feeds her only 2 oz at a time, burps and lets her relax a bit before feeding her again... like what she had to do with Claire's brother and sister. It makes feeding even longer (if that were possible), but all the better for Claire!

August 13-14

The oddest thing happened.
Claire's website when down... not only down, but all the files were erased. And Claire's email wasn't working... poor Claire, she felt so out of touch with her friends!! This was all well before the blackout, and the company is in Utah anyway. Claire thought it may have something to do with the latest greatest virus, but not hearing anything for 2 days is a bit ridiculous.
Mom when in and uploaded the pages (she has them all backed up), the site went back up. She shot off a few emails to the company (no phone number available) and never heard anything. On Thursday, the site was down again... this time the files were there, just not 'hooked up'... so mom decided to switch web hosting providers.
Her website is up and she is happy... even saved some money by the switch. The new company has a lot of phone numbers to call and email... and they got the site up and running within 24 hours! Go DAAAADDY!!

August 12
22 weeks

Fortunately, she slept well through the night and got plenty of needed rest - as did mom and dad. It was also an indication that her congestions seemed to be toned down, since she was able to rest. She slept between mom and dad, and everyone was comforted having her there, especially Claire who probably enjoyed being next to her parents and having the nice comforting mom and dad scent. When she woke up, she had 2oz of Pedialyte followed by 2oz of formula. She took a nice long nap and got up and had a nice warm bath and drank about 4 1/2 oz more of milk before going back to sleep. Today is 'get well' day for Claire, and mom decided to work from home so Claire could get back on her feet from lots of TLC that mom provided. It was very considerate of Claire to sleep so much, so mom could get lots of work done.

August 11
5 months

Claire still has congestion and seems kinda miserable.
Guess no one told her that its her 5 month birthday and she should be partying! Her dad was up with her until 1am. Mom has took over... and Claire was dozing in and out in her arms. At almost 2am and the decongestant started kicking in. But Claire was still waking up crying every 10-15 minutes. Mom gave her some Mylacon (for gas) and some Tylenol (to help her sleep)... Claire and mom finally dozed off, but don't know what time, and don't care, Claire was sleeping on Mom's chest in Claire's room. Mom gave Claire Pedialyte and decided to put her on clear liquids for a while. Claire is taking the nose drops to her daycare today too.
Dad woke them up for the Audiologist appt. Mom let Claire sleep more while she got ready and whisked Claire off to the 8:10am appt.
The dr looked in Claire's ears and was able to clear wax out of them... oddly enough it made mom very happy. To mom, this means that Claire HAS ear canals, and that there is wax in there, just like a real person!! Mom jumped for joy at the sign of the wax. The dr recommened that Claire come in and try the ABR hearing test. He said they have new 'probes' that may be small enough for Claire now, and they can also test at the bone behind the ear, so the canal can be small or blocked and it won't matter. Overall, a very productive morning for Claire and her mom!
The day didn't follow along so well. Claire decided to boycott the Pedialyte and only had about 6 oz for the day. She also didn't like the decongestant and gagged on it and thew it up, along with about 1-2 oz of Pedialyte.