As many of you know, we have had quite a few set backs so let me go back to the beginning. Last Tuesday they began giving Prudence a diuretic to pull excess fluid from her body. This was in effort to wean off her oxygen. Friday, Prudence was still having some episodes but her oxygen was almost weaned all the way off. She took most of her bottles fine, although with a few, she was real sluggish and disinterested. So Friday night I went to work and called to check on her just after midnight. And when I called, the night shift nurse promptly handed the phone to the nurse practitioner.
Never a good sign.
So what happened.
While Prudence was eating her midnight bottle she started to sputter a bit. The nurse sat her up to burp her and Prudence spit up a good deal of her feeds and started dropping her oxygen saturations. They put her back in the bed but she was already turning blue. And then her heart stopped.
Her
Heart
Stopped.
So they had to do a minute of chest compressions and mechanical ventilation. She finally came around and pinked back up. Thankfully they did not need to put a breathing tube back in or anything like that. But that is enough to scare the ever living you know what out of this momma. I left work and Juan rose out of the depths of his sleepcoma to come to the hospital and sit with our poor little girl.
Today we finally got some answers. Prudence has severe reflux. No this is not your "colicky" infant. No this is not the stuff that you treat with some zantac. This will literally stop her heart. Prudence has trouble keeping her food in her stomach and as soon as she lays down everything decides to come back up. When it does, it collapses her weak and scarred airway. So Prudence stops breathing. Which leads to her heart slowing.
The only real fix is for Prudence to get bigger. She is not big enough for surgery (we still only weigh 4lbs 3oz) and like I said, this isn't the type of reflux that can be fixed with any medication. We are thickening her feeds to see if that will help weigh the food down a bit more and it also means we can give her smaller volumes to get the same caloric content. Hopefully we will see a big improvement in reflux episodes now that we know exactly how severe the problem is.
And all of this has lead to Juan and I realizing how badly we need to work on putting the girls first. So I am going on leave early to be with Prudence and learn how to take care of my special needs little girl.
Overall, she is doing better. She did aspirate or breathe in her refluxed milk. Her chest x-rays look a bit better. Blood work is improving daily and she did get a blood transfusion. All we can do is that God will continue to see us through and be with our little sweetie pie as we travel down this road.
There are many times I have prayed in the past few days. Prayed for this pain to be put on me. For my little darling to be miraculously healed. But when you see this girl smile. I mean. Geeze guys. I am almost certain Prudence is the cause of global warming when she smiles. So maybe, just maybe, through it all, she is growing into the strongest tiny person I know. And I hope and pray that one day, when all this is just a distant dream, that she will continue to grow, and learn, and be as happy as she is even when all the odds are working against her.
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