Well, we counted the eggs, and now have less chicks than we thought.
We thought something had been brewing and now it's definite that Amelia has pulmonary hypertension. Preemies with severe BPD often end up having it, so it's more of a surpise that it reared its ugly head later rather than sooner. Although serious in adults and likely maintained but incurable, many Neo DRs feel children like Amelia will be able to grow out of it as their lungs grow.. if in fact that's the underlying cause (it could a few other things, but for her it's the likely candidate).
I'll get into details later, as we still have another echo on Friday and maybe a cardio-cath, if the cardiologist agrees (many don't feel it necessary, and Amelia is stil a little small for the procedure, but borderline).
The end result is that going home Monday is definitely out. We're hoping, after a further disgnosis, that the treatment will get started and she'll be watched to make sure it's going fine, and then off we go. Still looking at before Xmas. So Xina and I are a disapointed, mainly at her new disease, but also at the delay. But it's still not far off.
She also will be weaned on Os slower than before, as higher oxygen levels helped combat the hypertension. As a result of that and the fact she's working a little harder today breathing, they've actually gone up to a LPM of 1 1/2 (she started at 3/4). She's sleeping peacefully after having an active morning. I get over how beautiful she is, but I guess all father's feel that.
More to come. Thanks for the good wishes. We're still expecting a wonderful Christmas.
6 comments:
Dear T&C,
Though Pulmonary Hypertension is serious, it's just a hiccop on Amelia's radar screen. She has managed to develop, outgrow, and amaze her health care providers and this will be no exception. She is developing well, and is now beginning to take on a personality.
We will pray for continual progress and that Amelia outgrows this. A dissappointment at getting this close to coming home, only to be delayed, but I'm glad it was caught before you left the hospital's care. Gives us all a bit more time to prepare before her homecoming....
We are all excited beyond belief for you--Love MOM/Grammy/Glenna
You know, after all that you all have been through over the last few months, raising a "teenage" Amelia in a few years is going to be a breeze ! We will all be praying that this speed bump on the way home will pass very quickly. Stay strong...
Vickie Cross
We all wish and hope that Amelia DOES outgrow this. I assume this was one of the main reasons for all her respiratory problems right? If so, at least we all know what is going on with that issue. We love Amelia and I'm sure God will hold on to your hands and listen to all of our prayers.
With love.
Yes, another hiccup, but she will overcome this, with all the attention she is getting for it. I know you are disappointed about getting her home sooner, but your beautiful daughter will be with you. Love, hugs, and God's blessings to all. GMa
We are so sorry to hear of the delay and the reason for it. I know you must have been counting the hours until Monday... We will pray for her lungs to recover and for another homecoming date soon. Love, Bridget
We're thinking of you guys, but sorry for the delay as well. You guys have done so much and are so close to being together! Please let us know if you need anything to help prep the house for Amelia's arrival (Eliz and I are really good at cleaning, cooking, etc.. Marie has us well trained). Also, what's the status on your pup getting a new home? I'd love to help wherever its needed!
Love, annie
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