Friday, December 3, 2010

We had a full day today. We started with the care conference, which went really well. We came away with all the doctors in agreement about how to proceed (slowly) and how to switch from the formula to breast milk (in the hospital, under their supervision, before we go home). Everyone was happy. Then the pediatric GI doc, who was unable to make it to the meeting, came by this afternoon. He basically wants to completely change the plan. He wants her to get up to full feeds on the Neocate and then go home. He thinks she should be on it for 4-6 weeks and then switch to breast milk. This would be done under his care as an outpatient. I have to say I like his plan because it gets me home sooner, but I'm very confused again. Who do we listen to? Sure would have been nice if all the docs had been at the meeting.

Regardless of which plan we follow, it looks hopeful that we'll be home by Christmas. Hope is tolerating her feeds well so far. Her liver is improved already and her oxygen needs are slowly going down. She is off of all her meds except for one for her liver and it's an oral med. Looks like we might not become permanent residents after all.

The other baby in the photo with Hope is her roommate. He is getting discharged early next week and we are going to miss him. He and Hope communicate by setting off their alarms at the same time and getting dueling hiccups going. It was exciting for them to finally see each other as we posed for photos.

I did get some very sad news today though. There is another couple that I've gotten to know a little bit from passing in the halls. They were also long-term NICU residents. Their son moved off to the cardiac unit where he had a surgery which went well. When I talked to the mom a little over a week ago, they were thinking he would be coming back to the NICU soon to finish recovering and then go home (finally!). I hadn't seen her since then and I just found out that their baby got an infection and died a few days ago. Can you imagine? That would be like losing Hope after all of this. It seems so unfair and I'm sure their pain must be almost unbearable right now. Would you please pray for this couple? I'm sure they can use it.


  1. Oh that last part just breaks my heart. I will definitely be praying for that family.

    Thanks for the update on Hope. Wow, I think I am confused! That would be so frustrating to have doctors with differing opinions. I guess you'll get it all sorted out eventually? :) As always, you're in my prayers. :)

  2. I will be praying for the family that did not get to take their baby home. I know the pain that comes when a child goes to heaven before you. Thank you for the update. I'll be praying for you all too, as this process is so hard on the whole family.
    God bless ya'll

  3. Good to hear of Hope's progress-you will have a joyful Christmas when all of you can come home. Pat Syron

  4. Amy-
    Cyrus says "Ohhhhhh hope looks so good, poor little thing." he wanted me to write that to you.
    What an extra special christmas it would be if you and Hope got to come home! we will continue to pray for a good report!
    We love you,
    The Boyds