So this morning Norah’s labs all looked good, except her belly looked HUGE to me. While the doctors didn’t seem overly concerned, at her weight check she gained another 0.15kg, or 0.3lbs. This makes the grand total since last Wednesday prior to starting TPN a difference of about 1.4lbs. I kept asking how much weight is expected on TPN, and finally on of the doctors admitted that it should only be a few ounces per week, and that the rest was likely fluid. I felt both justified and upset that the doctors didn’t think that approximately a pound of fluid in 1 week was significant when her total weight now is only just over 14 lbs (including water weight).

Needless to say I had extensive and tear filled conversations with several doctors today and it was finally decided that we would do a “bolus” of albumin and IV lasix to try to get as much fluid off of her immediately as possible and then check labs in the morning. I’m still hopeful that we will be able to be home this week, and if we are lucky, tomorrow, but it all depends on if she stays stable after such a concentrated dose of lasix/diuretics.

The are a few silver linings to this hospital stay. 1) She is now getting the adequate nutrition that her body needs to gain true weight and grow 2) While not nearly as much, Norah still wants to breastfeed – much more after she is taken off the TPN for 8 hours, but I’ll take it 3) She is able to sleep longer at night, which means THAT I CAN SLEEP LONGER AT NIGHT! 4) She no longer has to take 2 of her oral medications since the vitamin and fat she was getting from her MCT oil through her TPN 5) We were given a new prescription medication for prophylactic antibiotics that is a much smaller and more palatable drug than her bactrim 6) Norah’s sodium is able to be stabilized through the mixture of TPN.

There might be more, but I’m not going to lie… I’m getting a little tired of living in the hospital and it’s going to continue like this for a while. Not to mention when we finally do get transplant we will be in the hospital for some time, then living nearby the transplant center for follow-ups for several weeks or months. But I have to keep reminding myself and Jason that this is all means to an end. We will get to our goal, we just have to have patience and faith.

Oh, and one last positive to end on, while it might be “dilutional” Norah’s bilirubin is below 20 for the first time in months and she isn’t quite as yellow! It’s so nice to see some white in her eyes!! It’s the little things along with her smile that get us through each day.

Sorry this is fuzzy but she moves constantly now that she’s trying to sit more often!