NICU mamas

MrsMcC.10409 · August 2013

I just wanted to take a moment to give e-hugs to the mamas who still have babies in the NICU. (((HUGS)))

How are things going? Have there been any milestones lately? Upcoming events? What are the goals you are working on as you work for release? Are you taking time to care for yourself as well?

Let us know how you are doing. Lots of love to mamas and babies! (And Dads too!)

beckyanddon · August 2013

Yes lots of love. I was so ecstatic when we got to come home!!!

gutsymama · August 2013

We're still in....

Surgery #3 still isn't scheduled, and 2 contrast studies have shown that Luke's repaired intestine is still leaking, which means it's healing a lot slower than they hoped, but they're still expecting it to heal. We're thinking it's not very functional right now, so it looks like we're going to have a long, slow road ahead of us to get him to eat and digest properly. It's really frustrating to have no idea how long it's going to take after the next surgery, or even quite what issues we're going to be facing. It's likely he will be ready to go home before he's ready to completely wean off of his IV, so we're preparing to go home with some equipment (but that's still at least 2-3 months away, and we really have no idea what that's actually going to look like).

I'm struggling a bit more lately. I think now that he's recovered from the last surgery and back to being just himself, there's nothing immediate for me to be actively worried about and working on, so it's back to just waiting around indefinitely, worrying about all the unknowns, and leaving a happy, seemingly-healthy baby every night to go home by ourselves. And it's really wearing at me being at the hospital so much; I want to be with Luke all the time, but I just don't want to be in that room anymore, and I don't know how to find any middle ground in there.

This is really, really, really hard. I can't even describe how terrible it is sometimes, and we're not generally ones to complain so without meaning to we've been only updating people with good news and not talking about the hard parts, because we don't want a bunch of pity - we have a really cool kid, after all! And then when we do talk to people about it, even (especially) random strangers who see our hospital passes on our shirts, they want to keep pushing with questions to get us to tell them he's going home soon, and he's going to be just fine, and we really can't know yet, and that's hard too.

I just want this to be over and for us to be home, and I hate it that we don't even really have a timeline.

MrsMcC.10409 · August 2013

I'm so sorry Mimi. I can't even imagine knowing that you have a couple more months ahead of you. I will be praying for a stunning and miraculous speed up in recovery that shortens that time.

If it makes you feel any better, there was a baby in the Nicu with Asher named Claire. When we left, she was still on oxygen and being tube fed. There was no talk of her discharge, and it looked like she was going to be there for much longer. Two weeks later I looked up her mom on facebook, and Claire was home and thriving! It was an unexpected thing, and I really hope something like that happens for you.

Lots of love to you!

KikiCohen · August 2013

mimi4347 said:

And it's really wearing at me being at the hospital so much; I want to be with Luke all the time, but I just don't want to be in that room anymore, and I don't know how to find any middle ground in there.

(hugs) I think this was the most difficult part for me, and we were only there 11 days. I can't even imagine what you're going through.

halij52002 · August 2013

Yes many many hugs & T&Ps!

KTZ17 · August 2013

This is a very sweet post, MrsMcC! I'm also sending my love to the current NICU mamas. DD was in the NICU for a month and came home almost two months ago. It seems like it was so long ago, so to those with babies still in the NICU, this will pass and just be a memory. To mimi, sending you strength to get through this tough time. I hope your son's condition improves quickly and you can bring him home sooner than anticipated.

[Deleted User] · August 2013

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sdtchica13 · August 2013

Sending hugs from here as well. I have been in your shoes and every second of those nine weeks sucked big time. It is truly a roller coaster and I remember feeling like I could not sit in that room another second. As bad as it sounds, I finally started taking some "me" time...whether it was a manicure, a walk, an hour in the mall, etc., basically anything that got me out of the NICU for a little while. It helped a ton, and made me feel better about being in the NICU the majority of the time.

Remember to take some time for yourself. Wishing you all short and uneventful NICU stays.

aehamilton13 · August 2013

KikiCohen said:

mimi4347 said:

And it's really wearing at me being at the hospital so much; I want to be with Luke all the time, but I just don't want to be in that room anymore, and I don't know how to find any middle ground in there.

(hugs) I think this was the most difficult part for me, and we were only there 11 days. I can't even imagine what you're going through.

This is what I found the hardest when we were there, as well. Big hugs to you, Mimi!

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