So we have been out of the hospital for about 1.5 weeks and Norah’s ascites has decided to behave for now! She is 1cm smaller in girth around her belly than when we left the hospital, so between the IV albumin and lasix while we were in the hospital and her oral diuretics, she seems to be maintaining well. We are very happy that her belly is not huge right now, as our big girl is very interested in sitting, and sometimes standing with support. I got out her little activity table and she stood with my help (but bearing weight through her legs) for several minutes as she played with the musical light-up table activities.

Since being on TPN she has definitely had more energy during the day, which is amazing because she is almost always happy (even more so than before) and now that her belly isn’t huge, she seems comfortable and willing to do more physically!! Nights are still hit or miss, as some nights she will be fussy or wanting to nurse or play for several hours in the early morning hours, but then other nights she will sleep for a 4 hour stretch with no issues. There doesn’t seem to be much predictability for our nights, so we are just grateful for any and all sleep we can get!!

We had a HUGE scare today with Norah’s Broviac line, and thankfully that worked itself out thanks to our nurse, Carol, who is cool and collected to make up for my over-reacting. Here’s what happened:

This morning when I did Norah’s flush for her Broviac I couldn’t get any blood to pull back into the syringe (like they showed me to do with each flush) even though I could push saline & heparin through it. I was so worried about a clot or occlusion in the line! So naturally I called her doctor’s office and they wanted us to go for a “line study” at the hospital, but then the scheduler at his office said they couldn’t get is scheduled till Fri. The only alternative to making sure the integrity of the line was ok was going to the ER and having them assess her.

In the meantime, we were supposed to have our home health nurse come today and she was running behind. I texted her what the situation was, so she said before we go to the hospital to meet her at her office up by the airport (which is conveniently sort of on the way to the hospital anyway). So I did so reluctantly because the doctor’s assistant said go to the ER. But I figured it was worth a shot if we could troubleshoot the problem first, we should to save us the trip and $350 copay for the ER. Thank God I did because the nurse just moved the line a little bit and then was able to do the blood draw easily. We also did her dressing change (on a conference room table with blankets and medical sterile padding) with minimal difficulty as Norah behaved better than she ever has during this tedious process. I was incredibly relieved and grateful to our wonderful nurse!!

Anyway, tomorrow we head to LA for a quick trip to see our doctors for another appointment on Wednesday afternoon so they can assess how she is doing, allow the surgeons to see her, talk about what might happen during transplant, and set us up just in case a transplant is coming up soon. Jason and I are excited and nervous to say the least. To think that it’s possible our little girl could get a life-saving liver soon is awesome, but also terrifying because we are literally taking out a very pivotal body part to put a new one in and crossing our fingers that her body doesn’t reject it while we load her up on medications! Such a scary, but necessary prospect!! We are just hoping the doctors are happy with how she is doing and that she is growing enough and stable enough in their eyes for transplant, so that we can look forward to surgery whenever it happens!