I'm gonna quote what the story is below...
We want Annalissa home & this journey has been months, w/ the future timeline unknown, on a roller coaster ride emotionally & financially. Asking for help isn't easy for us, yet seeing her in the NICU fighting for her life is harder.
Oct. 28th & Annalissa is 16 days old. We're living at the Ronald McDonald House for ~3 months now, unable to work for over a month so far.
We first learned of Annalissa's HypoPlastic LeftHeart Syndrome & Brain Malformations at 22 weeks. It was during an sonogram we were told she probably wouldn't live, all in front of our 4 kids aged 2-11.
Fast forward & we learn of her need to have 3 heart surgeries. The pregnancy is high risk & necessitated being right by the hospital for when Annalissa decided to arrive. With early & regular contractions, we "moved" into the Ronald McDonald House.
Annalissa was delivered at 38 weeks. She was rushed into the NICU to be put on meds to keep a valve in her heart that normally closes open. She needs to use it until they can do some creative plumbing. If she survives all surgeries, she would have a great chance at growing up with her 4 older siblings.
During the last 16 days, the roller coaster ride has continued and intensified. Several times we started & then had to stop feeding her breast milk. Due to human error, her heart valve medicine was accidentally turned off & left off for too long, which resulted in her body getting too acidic, her being unable to absorb the breast milk, & doctors talking to us about thinking about making a decision. That was at least the 2nd time (the first being during what I refer to as the "meeting from hell") when we felt like the medical (& perhaps the insurance side behind it) are ready & willing to give up, & are really asking us about letting her die. Not only are we not ready to give up, it's astonishing to us that this type of talk would come up so much in so short a time, especially after an episode that was due to a mistake.
Annalissa's biggest hurdle is her ability to breath effectively on her own. She is breathing on her own, but while she's been able to get enough oxygen, her breathing hasn't been effective enough (without support) to eliminate the CO2 from her bloodstream. So if she can't get past this & breath effectively on her own, the odds of her recovering from or even surviving the first surgery are extremely slim. And since in that scenario she isn't even a candidate for subsequent surgeries, this point has been repeatedly brought up.
Annalissa has continued to show signs of improvement. None of the brain issues has been shown or can be said to be causing her breathing difficulty (as was alluded to during those awful & we believe grossly premature conversations), let alone anything specific! And her breathing has been improving. Yes, she failed the test once when the breathing assistance was removed entirely, but give her time! We will try again. Her blood gasses currently look good, even with the assistance the machine is giving at a minimum. She is alert now & reacts to music, & recognizes us.
It could be weeks or months before her 1st surgery. Then there's recovery time before we can bring her home. She'll need another surgery at ~6 months & a 3rd surgery after a few years.
Dad is trying to work a little from here, but currently it is only in trying to prepare our plan to be able to work mostly from home. Annalissa will need to be somewhat isolated when home initially, since a cold or flu will be dangerous for her.
Please help us continue. We need to be here by her side, not just left with the nurses & doctors in the NICU. The ongoing time frame for this will be significantly long enough to have a financial impact far beyond our current capabilities. So we ask for a contribution, for Annalissa.