Baby Steps

Annabelle has had a pretty good couple of days!!

They talked about sending her to the floor yesterday, but Mommy requested one more day in the ICU since Annabelle keeps having little issues, especially at night, and is still pretty junky in her lungs.

This morning, they decided to keep her at least another 24 hours in the ICU because she is still junky, is still needing deep suctioned, and still keeps having issues at night. So maybe tomorrow??

Her “night” issues are peculiar and has as all going, “Hmmmm…”

And actually, she did it once during the day yesterday too. She’ll just break out into a cold sweat, but instead of running a fever, she gets very cold. She got as cold as 35.3C (which is about 95F). She gets super sleepy when she’s like that. And this is with a heating lamp, blankets and a “bear hugger” that is mean to warm them back up.

Last night wasn’t as bad. she got down to 35.9C, but given those odd episodes coupled with some junky lungs… yeah, we’re just keeping an eye on her.

Some GOOD things though:

Annabelle is OFF of vapotherm (thus the reason she can go to the floor… hopefully tomorrow!)

And she is weaned to only a liter of O2 on her nasal canula… our hope is to be able to take oxygen OFF in the next day or so.

Annabelle is also off all IV drips… all her meds can be given via her Gtube now. The only thing she is still getting via her IV is her Lasix (makes her pee) but that will be transitioned to her Gtube at some point when we get her fluid balance corrected.

Speaking of fluid balance… yesterday was fun! She was DRY! Like, really dry. Her eyes were sunken in, and she just looked pretty puny compared her previous, chunky self. She went from looking puffy to malnurished pretty fast!

So we actually had to GIVE her fluid yesterday! A rare thing indeed!

She’s sitting up some now, and is in much less pain too. Mommy LOVES to snuggle with her, and it is SO much easier because she has MUCH less things attached to her!

I’m starting to think about going “home” which is SO SO exciting but I’ll be honest, it makes me nervous too. We have a “new” normal that is centered around the hospital, and as excited as I am to go home, I dunno. It’s hard to explain. It’s just a little overwhelming. There is a lot to do to get ready, and it’s going to be a big change for us.

So please keep our family in your prayers. Both for Annabelle to get BETTER so she can go HOME, as well as for Scott and I as we prepare, for her sisters as they adjust to having their Mommy and Daddy home along with a baby in the house, and for all of us as we figure out med schedules, dr appointments, and just the whole craziness that is on the horizon.

Please don’t think by my nervousness that I’m not thankful that we are leaving the hospital. It is time, and we are so excited. It’s just… overwhelming. And a little scary.

But God reminded me the other day that He has brought us this far, and He hasn’t abandoned us now.

Ya know, I’ve always rolled my eyes when I read in the bible about Moses and the Israelites, and how they complained everytime God didn’t “do” something for them. God had proved his mightiness to them time and time again… He’d freed them from slavery, and all they could do was complain about their circumstances and assume God had left them.

I always though, HOW DUMB of them. Seriously??? They’d seen God part the red sea!! How dare they be so selfish and arrogant. It’s not like they had “asked” God for food, etc. They more just grumbled about not having it.

I don’t want to be like that. God has given us Annabelle, and has guided us through a very long nine months and been with us every step of the way. It hasn’t been easy, but HE has been so faithful to us. Now that Annabelle has her new heart, I dont’ want to start my belly-aching about all the things that are still unsure.

One example: Annabelle has no voice at the moment. She coughs… but when she cries, it’s silent. And it scares me! What if she’s gotten her new heart, only to lose her voice? (When they do open heart surgery/put her on the vent, it is always a possibility that her vocal chords could be paralyzed…it is still early so they aren’t worried about it yet, but are keeping an eye on it.) I just REALLY want to hear her give out a big ole’ yell!

There are many other things too, but I’m trying to remember that instead of grumbling about them, I need to lay my concerns before Jesus, knowing that he hears and cares, and trust HIM with the outcome.

I’m not perfect at doing this. But I’m trying. And usually I have to RE-lay them at his feet every day, because I tend to want to take them back before the day is out:-)

She’s still a little loopy here… but look at those pink cheeks! (Really, she’s a bit cold here…)

Annabelle’s new 4 chamber heart!!!! Wish I had a pic like this of before… suffice to say it would have looked VERY different!

Annabelle and Mommy snuggling!!

She’s a little dry here… can you tell? This was actually before it got really bad that night…