Adriana continues to do well on her feeds, through her NG tube. She still continues to be on 1cc an hour for 24 hours. Hopefully this week we will bump her up to 2 and see what happens. If Adriana can tolerate her feeds going up without dumping then we will be looking at a gt tube soon. How soon I am not sure but it will be something we will start to think about. It all depends what her GI doctor says. I am not sure how her bili is right now but at our last GI app it was down to 4.7 which was almost 1 month ago. We will have her blood drawn on the 24 of Feb and lets see how low it is not. She ocntinues to be on TPN 24 hours because of her sugars dropping. We still have no answer as to why they drop but we will see her endricin this week and they might make her come to day clinic and stop her TPN and draw her blood when her sugars are low to see what is going on. The Ng tube does not seem to come out anymore, well of course I have to almost retape it every day. She does gag a lot with the tube in her nose but it's the only way to get food into her belly right now. She is almost 18 pounds and growing, her color is much better, not yellow at all, her eyes are very little she looks like a totally different baby. I am enjoying her a lot , the only things I dont enjoy is she wakes up ever night at 12 am and wants to play. She will scream untill I get up and get her out of her crib. Which she will not go back to sleep untill 3 am, thats what I call crazy. Adriana will be 11 months in a few days and almost a year old. Can you believe it, she cannot stand or crawl but is almost sitting. She loves cartoons and to play and of course her dad is her world.
Adriana sitting
Adriana was in her tub of course it was bath time
She is nothing but cheeks and smiles
She loves pictures especially of her
This is her real skin color, no more yellow
Adriana and her dad. don't they look like tourists?
Adriana loves going hat shopping
Friday, January 15, 2010
Everything has been going good with Adriana, of course she has her NG tube back in. It was placed yesterday and we started her at 1cc an hour continuously. In 2 weeks she will go to 2 and on and on if she tolerates it. She hasn't been complaining much about those teeth but continues to chew on everything. I am going to buy her a high chair because the ot therapy told me she should have one. So she can sit in it and play with the food, which I think she has a point. I am not a big fan about the messy part or of having food in her hair but anything to keep her interested in food. Nothing new with her, all is stable so far I hope it stays that way. I have tried not to take her out too much due to the cold weather, unless I must take her with me. I will be adding pictures, I know I have said it many of times but I will this time hopefully today.
Thursday, January 7, 2010
I just layed Adriana down for a nap so I have some time to catch up on things. Lets start off with Adriana is now teething, she has her moments of sudden crying and I put some ora gel on her teeth which just makes her more mad. Give it a minute or 2 and she stops and feels better which is good. I only see one tooth already nut a big white bubble next to it so it might be 2 teeth. I took Adriana to her GI appo yesterday in Palo Alto and she now weighs 17pds 3 oz and measures 24 inch so she gaines 730 grams since her last visit and grew an inch as well. She is doing well and we are still trying to feed her baby food which she will take only when she wants of course. I have more sucess and different times it all depends on her. The Gi doctor was happy with how she was doing and looks. We also did lab work yesterday and her bili has come down to 4.7 thats the total we started omegaven when she was up to 13 and now has dropped alot which is very good. She has been on omegaven 3 months now and also turned 10 months yesterday. Her GI doctor told me that she looks like a happy baby which is what he wants. So we have ot thereapy on tuesday and lets see how that goes. Hopefully this helps Adriana more with her feeding. She does not have a oral aversion because she will alow things in her mouth she is just not the best eater either, so we will continue to work on that.
Monday, January 4, 2010
Im back I know it has been a very long time since I have poted on here but Adriana came down with a line infection. She was admitted in the hospital and we were there for almost a weel. We were able to bring her home the 23 of December. She was able to spend Christmas at home but of course her antibiotics came home with us as well. They showed me how to give it to her at home, I gave it to her three times a day which I had to get use to because I would forget at times.She was getting vancomysine and we finished antibiotics on the 3rd. Well christmas was fun we had family come over and spend it here due to Adrianas connections, which they all understood that it would be hard to do the connections somewhere else besides home. We also had a good new years my mom came over and spent it with us, it was fun. Adriana has been doing good acting herself of course and we will see her GI on wend, we have clinic lets see how low her bili has come since our last visit last month. I will be adding pictures of Adriana very soon so you can see how well her color looks here eyes are still a little yellow but not much. Plus her hair is starting to grow and get longer, we have a ot appo on the 12th of this month.I will be takeing Adriana up to the NICU that day to visit all of her old nurses and her old home. I wander what they will say, shes bigger and beautifull what else can they say? Well the pictures are coming soon
On March 6,2009 Adriana came into this world weighing in at 1pd 10oz 13 inch long. She was doing so well for being so small. No oxygen or any kind of help. At 2 weeks of life she got NEC, she had 2 surgeries and was diagnosed with short gut. She only has 45 cm of small and no large. She has been faced with many complications along this journey but together we will continue. Soon Adriana will be getting on omegaven and on her way to a much healthier life.