At first she was hypotensive, meaning they couldn't keep her blood pressure up. Then she had a lot of trouble with lactatic acidosis, meaning her pH was off and she had too much acid in her blood. Her acidosis trouble lingered for hours and had us terrified. Her lactate level got pretty high and the doctors couldn't get it to come down despite trying multiple methods. This lab is indicative of tissue hypoxia and cell damage. So it could've had multiple causes, a minor cause, or a very dangerous/significant cause. At one point a cerebral ultrasound was preform to rule out a stroke. Sean and I watched in horror-especially after learning results wouldn't be back until the morning. At another point we were told that if the lactate level didn't come down they would have to preform an echo and cardiac cath to look into MAPCAs, which could signal the need for additional surgery. She wasn't in condition to handle another surgery so soon, and though we didn't speak it aloud each of us couldn't help but have thoughts of losing our baby. So needless to say we were both a wreck.
After agonizing hours of tweaking epinephrine, morphine, melrinone, insulin and multiple other medications- the level finally showed improvement.
With all the potentially sedative medication cut back she also started to move around a bit and open her little eyes. I can't describe how heartbreaking it is to see your infant
cry silently past a breathing tube and not be able to do anything about it. I mean nothing. She can't be held. She can't be swaddled. She has very little surface area not covered with a monitor, IV line, or major incision. Too much noise or voice stimulus also isn't recommended. It's crushing to wonder why your baby is crying after having such an invasive surgery. Is she in pain? Is she scared? Is she struggling for breath? Is she uncomfortable? Is she hungry? Is she feeling all the above? I'll never know- all I can do is watch her struggle.
Looking at such a little baby you can't help but think she is too precious to undergo so much suffering. It isn't right,. Yet her pain is also her pathway to life, so how can I not put her through it. If she doesn't endure these atrocities she'll never know life's beauty. The irony is cruel. And I feel cruel. I feel cruel for having signed the consent. I feel cruel for standing by watching her suffer. I feel cruel for doing nothing. That's all I can do. Nothing.
As for now she is still on her ventilator and is fighting it. She is having some trouble with weaning. Probably partly because she is also having issue with peeing off a lot of the extra fluid she has on board. She's super puffy and looks so pale. She doesn't look like the same baby. My baby.
My sweet precious baby who hasn't yet seen her first week of life.
We're hoping she continues to improve and stays as comfortable as possible. Please continue to keep her in your thoughts but also pray for all the little babies on this floor-many of whom seem worse off than our sweet girl. These kids are undeserving of illness and pain, and yet are fighting for their lives. Hold your kiddos close this Christmas and love them fiercely.
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