It's absolutely fabulous.
We are completely overjoyed, and in love, and excited...and terrified.
I could tell you about all of the things that have happened in the last three days- the tubes, the wires, the needles, the visits from doctors, the beeping monitors, the facts about life post childbirth, etc. etc. etc. Children's hospital is an incredible place to be- they take very good care of Nora, and I, and Kevin. They help us with EVERYTHING. It's really indescribable.
But also. It's Children's Hospital, which you don't just get to deliver at and spend time in the CICU if things are going as smoothly as one might hope, so that's a bit overwhelming.
But, we are exhausted of being overwhelmed.
So instead. Let's talk about our wonderful little girl:
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| 3 days old after a big dinner :) |
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| Soooooo sleepy. |
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| Reminding us of all her ultra sound photos- hands in her face:) |
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| Her current bed...sooooo many cords, such a little lady in there..complete with a zoo. |
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| 2 days old- and happy as can be! |
Nora is doing wonderfully, all things considered. She is feeding pretty well, after much practice- something they said we likely wouldn't be able to do very quickly, but we are!
She is breathing on her own, and has been since she was delivered- something they said may not happen, but it is!
She has no edema in her feet, something they said she would likely have- but she doesn't!
She is living! Something we once thought was impossible- we can't express how unbelievably happy we are!
They were right about some things though: the coarctation of her aorta. She is having heart surgery tomorrow afternoon. BUT, that being said, it's looking to be a very manageable surgery. More manageable than they once thought. Her aorta is too narrow for proper blood flow, and must be widened. The way they do that is making an incision on her side (as opposed to front and center as once thought), cutting out the portion of the aorta that is too small, and sewing it back together (as opposed to inserting a replacement part such as cow bovine in the narrowed portion).
The surgery should be about 3 hours and then she will be able to join us back in room 3024 in the CICU, our home away from home. She won't be able to be held or feed for a while after surgery, but if all goes well this shouldn't last long. Then, she'll spend a few days more in the CICU and be moved to the CPCU, a step down, where she will get ready for discharge a few days later- hopefully. There are a billion things that could change that path, however. She will be tested and tested and tested to make sure ALL THE THINGS work perfectly before they let us begin that path towards home.
The surgeon casually said today, "there are some risks including not surviving the surgery, etc. etc. etc. (I quit listening after death was given as a risk, obviously). But the truth is, without this operation Nora cannot live. So, bring it on.
Her lungs could also prolong our stay. She doesn't need surgery as of yet on those bilateral masses. She is breathing "perfectly" (according tot he attending pulmonologist yesterday), but the masses are still there. They aren't inhibiting lung function- YAY! But they can become symptomatic in time and cause infection. We've heard anything from surgery to remove them around 2-4 months, to a simple check up at 6 months of age, one year of age, and continued check-ups, MAYBE to be removed if they ever cause a problem. Only time will tell. Before we leave the hospital they will also do more investigations, testing, etc.
Nora Grace is defying odds left and right, or at least surprising us every day- first by being so quick to conceive, then by giving us a scare, a rare diagnosis, and making it to term. Now she surprises us with her strength every day. She is a miracle for us, and a blessing I didn't know we couldn't live without. She is positively perfect.
We've made it through many obstacles to this point, and the scariest one is yet to come tomorrow. Wish us luck, send your prayers, and hope for the very best outcome for Ms. Nora's heart surgery.
We've been exhausted and busy and learning everything there is to learn about our beautiful little girl. So many of you have shared your love and your praise- we are so grateful. We hear every single word, message and prayer, and can't thank you enough!
We promise to keep you posted on the outcome of surgery as soon as possible. And as soon as we feel comfortable having more visitors, we'll let you know!
THANK YOU!
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