April Clinic Visit

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.

Back on Track

So we are back on track for weaning. Juliana is back to her base line for oxygen and within the next week we will try to wean her again. It's nice to put the suction machine back in the closet. She is still getting mucinex twice a day to help keep things under control.

In other news..... Juliana is officially a crawler. She is actually up on both her hands and knees. Now I have to pull the gates out of the closet. I was in the kitchen the other day washing up the dishes when I hear a little voice behind me saying "hi, hi, hi" (this is Juliana's way of getting your attention). She had crawled into the kitchen and was sitting there on the floor with the cheesiest smile ever. She is really proud of her self when she knows she has accomplished something. She is also pulling one of her brothers old tricks of pulling out all of the books and movies from the shelves and throwing them into a big pile on the floor. I forgot what toddler life was like, but it's so refreshing to see Juliana doing normal toddler things.


It's been great to see her relationship with her brother blossom. Omar is generally very loving to his sister and often likes to "help" her out. Her response is to push him away, pull his hair, or grab his face (typical little sister stuff). What's even better is that Omar just lets it happen. Occasionally he comes crying to me "Juli hit me" and then he's fine. She is still his biggest fan though and he's her best entertainment. No one can make Juliana laugh the way Omar does. They definitely have the love-hate sibling relationship mastered already.

We have a clinic visit in Boston next week and hopefully our surgeon will be there. I hope to come back with a set plan for surgery this summer. I also am curious to see how much weight she has gained on the new formula.

Weaning on Hold

So what I was afraid of has come true. After having a fabulous virus free winter we have ended it with a cold. It's quite disappointing because we have waited all winter to start weaning her oxygen and now we have to put things on hold. On the bright side she is not sick enough to require a hospital stay or make her uncomfortable. She has some extra congestion and an occasional cough.

Just hoping this doesn't delay things too much. I am still hoping that we can get her in for surgery this summer. Back to the good old wait and see game.