Welcome Home

Well Claira came home on Friday after a long extended break from her brother and sisters. She said she missed them and wanted to come home. She is doing well but we are waiting to hear a final diagnosis on her "eating habits".
This was a difficult week for our family, but I believe it could've been alot worse if it weren't for the enormous support from our friends and family. Thank you to everyone who brought meals, spent the night so Evie would have someone to crawl all over, let our kiddos have a fun place to go to get their minds off of things, donated money, sent care packages and gifts, helped get the kids ready for school and then of course took them to school ... on time I might add, came to visit us in the hospital so I didn't talk the nurses' ears off every time they entered the room, brought food for the kids and didn't bat an eye whenever we needed something!
Claira had a tough time at the hospital and decided she doesn't want to do that again. (Unfortunately, if she does require surgery in 3 months she'll have to go again.) When she was admitted she weighed 9 lbs 13 ozs and left weighing 10 lbs 4 ozs. We're starting to see plumper cheeks. It took raising her calories from 24 to 27 per ounce. She's also getting continuous feeds for 12 hours every night at a rate of almost an ounce per hour. Mom was trained on how to insert in case it comes out, which is something she's not looking forward to. Speaking of Mom she went a little picture crazy so Claira could share her experience with you.
"One of the first things they did when I got to the hospital was put in this crazy IV in my hand. Mom was pretty freaked out, but it didn't bother me ... I didn't even cry. Then the nurses put this wrap over it so I wouldn't pull on it or suck on it too. Obviously they've never tasted one."
"Everybody called this my E.T. foot. I'm sure I'll understand that one when I get older. They had to monitor how much oxygen I was getting because of the RSV, so they placed a sticky bandaid with a little sensor on my foot. It didn't really bother me, but if my oxygen got too low a loud beeping noise would wake up Mom and a nurse would come running into my room. Most kids can't go below 94% but since I have a heart defect my little body can go down as low as 86%."
"The next day a tech did a sweat test to check for Cystic Fibrosis. Mom and I both wondered how they were going to do this one. She put these bands on my legs that had a chemical inside of a gelatin pad that triggered my sweat glands. After 30 minutes she came back and used another band to absorb the sweat. It was pretty cool because I didn't hurt. The test came back negative ... as well as every other test they did while I was there. I just like to keep everyone guessing. That night after the dietician and the doctors decided I wasn't eating enough a nurse put in an NG tube. It's kinda yucky because when they put it in I cough alot. It gags me and I wanna get it out! Once they stick it down far enough it doesn't bother me as much. This way they can give me food all night long while I sleep. I'm pretty tired at night and after a day of eating, kicking and whatever else I just can't wake up to eat! This doesn't get me down though ... I'll keep on smilin'!"
"Because I had RSV a respiratory nurse had to come in every four hours to do respiratory therapy. I loved it at first because they would pound on my chest and back ... it actually put me to sleep. But then they would use a long tube and stick it inside my nose and down the back of my throat to suction out all the mucous built up from the virus. It hurt! I was brave for Mom though."
"The night before I went home they did yet another test! This time they wanted to check for reflux over a 24 hour period. They put probe down my nose again that had a little sensor on the tip that would be watching everything that went in and out of my belly. The funny looking thing on my lip was watching my breathing to make sure that I didn't have sleep apnea. Again, everything was normal. Mom's friend said I looked like the Pringles man."
"After almost 9 days in the hospital I finally got to go home! Mom's pretty stressed about having to take care of a baby with so many needs, but I know she'll be fine ... she and Dad make a good team."