Yesterday we took a trip up to Boston for Juliana's clinic visit. She gained 500 grams since our last visit and is now up to 21 lbs 2oz. and in the 11th percentile for her weight according to her adjusted age. We are continuing to increase her feeds according to her stool outputs and are now going to eliminate one night of TPN. So she will receive her TPN 6 nights a week and on the 7th night we will give her a bag of hydration fluid. Some other changes to the make up of the TPN may be made depending on the result of her labs.
Her surgeon was actually at clinic this week and we were able to discuss the plans for surgery. He is very adamant that Juliana be completely off oxygen before we can even set a date for surgery. I must say while I am not completely happy with this I am very grateful that he has a sincere concern for Juliana's health. Knowing the toll this type of surgery can take on kids with normal functioning lungs, he is very weary to attempt this until she is at her very best. With ECMO being our only fail safe should she have trouble handling the massive amounts of fluids required for the surgery, I feel that going in we should all be confident that Juliana is ready. I don't think Juliana would be able to tolerate another run of ECMO. So it may be that we have to wait it out another year. Juliana may also surprise all of us and come off oxygen before the summer is out and we could get her in before the next viral season begins. I am preparing myself mentally to have this go both ways, but only time will tell.
Juliana continues to move closer and closer towards walking. We have gotten her to wear her backpack during the day now. She can do everything in it but roll which she hasn't been doing too much of anyway. She is crawling and can pull her self to stand almost anywhere. She cruises the furniture and walks around the crib with ease. I am so amazed at the progress she is making.
I had to throw in a pic of Juliana's big brother Omar playing in the sand table.