Well, we have good news and bad news from Annabelle’s Bronc procedure she had done today. (They put a little tube with a camera on it down into her lungs and took pictures.)
Bad News: She has something called Bronchomalacia. In very basic terms, her broncial tubes on the left side are floppy. Think of it like a straw. One made out of plastic should be sturdy and air will blow through it nicely. But Annabelle’s is weak, so her’s collapse easily and flop around. Kinda like if you cut off the end of a long balloon. As long as there is pressure being pushed into her lungs (right now it is the CPAP machine) her airways stay open. But if she has to breathe in herself, there isn’t enough pressure to keep her little baby girl broncials open.
Good News: It wasn’t as bad as they feared. The Pulmonologist told me he’d expected to find it extra floppy… but it was much less floppy than he feared. That, and it is only the left side he is worried about. Her right side is much stronger.
Bad News: There is no “fix.” It’s one of those, treat the symptoms, but can’t take away the problem kinda things.
Good News: While there is no way to fix it… many babies, as they grow, get stronger and their airways open up and stop flopping on their own.
Bad News: There is no way of knowing WHEN they will get better. It could be tomorrow. Next week. Next Month. Next year.
Good News: We’ve decided, for now, to wait it out. Since she isn’t an ultra-severe case, they have high hopes that we can get her through this.
Bad News: This means we might be in the hospital for a while. She can’t come home with her heart condition on CPAP or Vapotherm.
Good/Bad News: There is another option. We could do a trache (they put a hole in her throat and put in the trach tube to push air that way.) This is not one we are considering at the moment, though, for a few reasons. 1.) She is so close to her Glenn and there is a good chance we’ll be here anyway until after it, so why not wait and see if they grow while we’re here? 2.) It’s another surgery before her Glenn. The time between the Norwood and the Glenn is very critical, and if we can NOT do a surgery between them, this is better for Annabelle. Any surgery for her right now is much riskier than for most babies. 3.) She’s been extubated before. She lasted 19 days and weaned from both the CPAP and vapotherm, so from Scott and I’s perspective, it shows that she CAN do it. She failed then because of her vagel episode, not from airway obstruction.
If she continues to have issues after her Glenn, that’s when we’ll reevaluate. The hope is, though, to get her better BEFORE then. Only time will tell that one.
GOOD NEWS: GOD KNOWS EVERYTHING!!!! These are big decisions, and ones we don’t take lightly. We’ll be continuing to pray and consult doctors in the coming days, but right now, we are trusting God to show us what is best for Annabelle. My heart absolutely aches at the thought of not taking her home yet. I REALLY wanted to be home by Christmas. But God knows all this too. For the billionth time in the past four months, I open my arms and hand my baby, my family, and myself, to a very powerful and loving God. He knows the desires of my heart. He knows my pain, my fears, my frustrations, and my failings. God just knows.
Big sisters and Daddy came by tonight! (didn’t realize that I didn’t get a picture of Gabby with her… but Gabs was a bit wound up tonight, that could be why!)
Annabelle’s had a good day! I think she’s still groggy from her medicine from her procedure, as she’s slept all day. But her stats have been phenomenal all day, which is GREAT.
We’ll go for another PIC line on Tuesday (last time we went to the OR for that too… Mom is not a fan.) But her RA line is going bad, so we gotta have a good line to get blood gasses and give meds through.
OH!!! And LACY lost her first front tooth!!! (see picture…) Very big news:-)
My daughter also has Bronchomalacia. She is ten years old and doing good. She wasnt diagnosed with Bronchomalacia until this past June, mainly because she has Cystic Fibrosis, so it is a catch 22 as to whether or not she was born with it or if it progressed because of her ongoing lung issues.
I will continue to lift your little up in my prayers.
Congratulations to Lacy on losing her first tooth! That's so exciting!
Praying God will keep His hand on you and your family, that He will draw you under His wings and shelter you.
Krista – you are such an inspiration to me. You are so strong. I pray for Annabelle and your family every day. Love ya!
Yay, Lacy! You'll be getting a permanent tooth soon.
Thanks for the update on the little princess. We'll be praying, Krista.
Just want you to know I don't always comment but am faithfully following your journey.
I'm still holding you up in prayer! So glad to do it. I know He has a plan. Be strong.
Still praying. Remember whose hands are holding Annabelle and your family.
Wow… my heart goes put to you. People tell me they don't know how I can juggle school and kids, but I know so many other moms like you who are doing way more amazing things than me. You are in my prayers. (Cute pics, btw.)
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