This is Fiona sleeping in her new Nap Nanny. It is wonderful. It keeps her elevated while she is eating. But she likes to sleep like a goofball with her face smooshed up against the side and feet over the side!
Getting warm after her bath!
Having fun splashing around in the bathtub!Well we saw Surgery, Pulmonology and ENT a couple weeks ago and everything went well!
At the surgery appointment we got some interesting news. Fiona will not be having a major surgery anytime soon! We will be using the "compression method" to fix her O. Once her O is completely skin (it is getting there!) we will wrap it every day with an Ace Bandage (or something similar) just tight enough that it is putting some pressure on the O. The pressure will slowly start to push things back in. The downfall to this method is that it can take up to 3 years to complete. But it is the least invasive and we are thrilled that Fiona will not have to have a major surgery to put things back in. She will have to go every so often to that they can cut part of the skin off and sew what's remaining back together so that it keeps getting smaller. When everything is back in then she will have to have surgery to close the abdominal muscles. We have a new cream that we are putting on the O to get the rest of the skin to grow. It grew really fast a first, but has slowed way down. I guess what happened is that the edges healed so her body stopped trying to fix it! This new cream is supposed to get rid of all of the dead skin cells and regenerate the skin growth. Dr. Burns also put Fiona on Zantac because he thinks that the NG tube might be causing some irriation in her stomach. Overall he was very impressed with her growth and weight gain and has no doubt that she will be just fine! He also told us that he was one of the very few doctors at the beginning that thought that she would make it more than 2 weeks. Crazy.
The ENT doctors said that everything looks good with her trach and stoma. She will have to go back in July to get a scope done so that they can take a closer look.
The Pulmonologist said she looks great! They turned her BPM (breaths per minute) down to 26 (from 30). She said hopefully she tolerates it and they can start turning other things down and we can get her weaned off. We still have no time frame for this... it all just depends on what her lungs can tolerate.
We don't really have a reason for her throwing up. We think she might have been getting too much at one time. We have been trying to mess with her feeding schedule ever since and have had more episodes of throwing up. She was throwing up all last week. Right now we are feeding her 65 mL every 4 hours. She is tolerating it, but we know she is not getting the amount of calories that they want her to have. We are trying to find a balance between her getting enough calories and not throwing up! She is still not doing very good with the bottle. All last week she really fought every time we tried to put the bottle in her mouth. This week she has been a little better at least letting us put the bottle in her mouth, but still doesn't take much.
Today she went to Dr. Gorlowski (the Pediatrician) for her 6 months shots. I can't believe she is almost 6 months. And I hate having to watch her get shots!
She is smiling and laughing (although we can't hear it) a lot now. She is always chewing on her hands and fingers. Tom thinks she might be getting a tooth. I hope not, we don't need to deal with that yet!
We will be seeing Surgery again, and Cardiology and Urology soon. We're hoping to get good news from all appointments.
