Tuesday, December 1, 2009


Adriana and her dad, I wander if they look alike?



Adriana playing with her blanket, she is still a little yellow but her color is much better



After almost 2 months on omegaven


Before omegaven

Can you tell the difference? Plus her hair has grown as well
Adriana is doing well, she is getting over her ear infection. Of course with help from some antibiotics. She had a Dr appo yesterday, the doctor told me it has not yet cleared but as long as she is comfortable she should be ok. She has been sleeping very well at night, she iwll wake up once thorugh out the night sometimes but iwll go back to sleep. Other times I have to wake up and she thinks it's play time which of course she is very wrong, not at 2 am. Things are still the same with her but of course her BILI is coming down and liver points as well. She has a GI appo tomm and we will see what they say. Adriana has no NG tube or anything right now. They told me to try bottle feeds but of course she does not like the liquid in her mouth and gags. She will acceptthe spoon though, and so I tried giving her baby food. My mom purchased some organic baby food at Safeway, different flavors and told me to try and see if she will eat it. I will tell you it does work better than the bottle. She will taste it and roll it around in her mouth untill eventually she swallows it. I only give her very little not even a spoon full, but it's pretty easy for her to take it. The problem is her GI doctor told me not to give her anything but pregestimil or pedialyte. The thing is I think she just doesn't want a bottle and it is much easier for her to swallow something when it is thick and will go down her throat when she wants, not like th liquid that goes straight down even if she doesnt swallow. She does have GI appo tomm and I think I will let them know what I have been up to. We have become very use to living this life with Adriana, line changes, ostomy care, dressing changes and Iv poles have become another routine in my daily life. I am very confortable with doing Adrianas care and not over welmed at all, I still encounter some problems at times but am able to fix it without having to call pharmacy. As for our equipment provider is great, they are very helpfull when I need it and always deliver things on time. We have our things deliverd from UPS every friday, which is the day I hang Adrianas last bag. Thanksgiving was fun this year, last yer I remember I was pregnant with Adriana and had no worries at all. This year she was home to spend Thanksgiving with us, and she enjoyed the company from the family. She loves the attention and cuddles of course, Adriana has been a very happy baby since she got home from the hospital. She enjoys spending time with me and her dad. She knows when we are at the hospital or when she will be poked which is hurtfull to hear her scream and cry. That has been a part of her life for almost 8 months and I just hate having to put her through those things still. Well as we reach the year 2012, looking back on this year has been a very bumpy ride. Adriana was born March and has gone thought alot since, 5 sugeries thousands of needle sticks, endless blood draws5 or 6 picc lines, 2 broviacs, 3 spinal taps, pre transplant evaluation and of course the best of all Started omegaven. I hope the coming year brings more happiness and less heart aches than this year.