Thursday, December 3, 2009

Evany Update and Getting Sappy

Shannon asked a question in one of the previous posts and it was just worded so well that I thought I would post it. So thanks, Shannon!

So when you say that on paper she is very sick, but that she didn't get the message...does that mean that she isn't actually as sick as they thought she would be?  Or is it that she is, but she is behaving as if she isn't?

It's kind of a combination. Evany was born at 32 weeks. The average size for a baby at the gestational age is 3.75 pounds, and my doctor said that generally, 32 week old babies go on a ventilator more than half of the time and nearly always need some sort of oxygen, at least at first.

That was the odds were were given before she went downhill so fast. A 32 weeker with a 2/10 score on a biophysical profile is not in good shape. Let me just say that they were standing by ready to resuscitate her, and fully expected to have to do so.

But Evany didn't follow those odds. She was born crying, and had high APGARS, which we didn't expect. She weighed over 4 1/2 pounds, which we didn't expect. She has been surprising us from the beginning.

As far as the comment the neonatologist made, on paper, Evany is a sick kid. The X Rays of her lungs are hazy and show lots of immaturity. The cultures of her blood show some pretty serious infections. So she is that sick...she does have premature lungs, and she does have a blood infection.

In practice, although she is on heavy doses of antibiotics, she is not symptomatic at all and does not act like a baby with an infection. Even though her lungs are immature, she does not breathe fast, struggle to breathe, or have low oxygen saturation. She has never needed any oxygen whatsoever since her birth.

It's pretty amazing. Even more amazing is the fact that the newest cultures that were taken, from her blood and spinal fluid, are growing nothing. NOTHING. It will take more time to know for sure, but it looks like the proactive antibiotics while waiting to identify the exact infection have done a good job of sending it packing. Now that they have identified the infection she does have, they were able to discontinue some of the antibiotics she no longer needs, one of which is the Gentamycin! Thank God! She will remain on another antibiotic, one that the infection she has is sensitive to, for at least ten more days.

So yeah. It's crazy. She's doing better than we every could have hoped. At the same time, she is in the NICU, and things can change in an instant there, so I feel like I always need to be prepared. Kind of like how this morning she had a feeding tube because she had been getting lazy about finishing her bottle overnight and then an instant later she didn't have one anymore because she'd yanked it out herself. Go Vivi! The best part is that she's taken every one of her feeds today by bottle so they haven't had to replace her tube at all! I like seeing her little face without anything taped onto it.

Her weight last night was 4 pounds 6 ounces, so she's lost 3 ounces. That's actually not bad at all. Although she is eating, she's getting tiny amounts of food right now, so it's not enough to sustain her weight. She's also on an IV with TPN and other supplements to keep her going until she is able to handle eating more. Sucking, swallowing and breathing all at once is tough for a 32 weeker, and the suck swallow breathe reflex is usually not present until 34-35 weeks. So the fact that she is taking any of her feeds by mouth is a step in the right direction.

The plan for tomorrow is to place a PICC Line, as long as all the the cultures of Evany's blood are still negative. That will allow them to have a long term IV to give her antibiotics and vitamins, as well as do blood draws, I believe. She has had an IV site blow just about every day, I think, so this will save her little veins a lot of trouble. She's also been started under the photo therapy lights for jaundice, so she's sporting some super fancy sunglasses. Other than that, she's just eating and sleeping and growing.

Thanks to all of you for all your prayers! It is never far from my mind or heart that I could be sitting here writing a very different post, about collapsed lungs and ventilators and deafness. Or even worse, I could be sitting here writing about the baby who we lost instead of the baby we almost lost. It does not escape me just how close we came to losing Evany on the night she was born, and it makes how well she's doing now seem almost surreal. I feel ridiculously blessed, that for once something bad just almost happened to me. I don't often get to say almost. Usually it's all or nothing. Dead babies and cheating husbands and deaf sons. I never seem to be able to avoid the bad punchline. But this time, I did. Evany lived, even though we came within what felt like an inch of losing her, too.

There will be days when I am home with my kids tearing my hair out. There will be days that I am feeling sorry for myself for being a single parent. But tonight? Tonight I am nothing but grateful for all five of them, and even to my husband for being a part of them. My life would be dark and sad without every single one of my kids, and Evany has completed our family in a way I never expected. She is the tiniest, most beautiful piece to the puzzle that has become our family, and now that I know she was the prize, I would go through the past seven months all over again. She has been worth everything I thought I couldn't do on my own, every night I cried myself to sleep missing someone, every day I thought I could the kids were too much.

Because now, I know I can do it on my own, and the rewards are great. The smiles, the laughs, the goodnight hugs...I'm not the one missing out. I'm not the one who has lost a single thing. I didn't want to be a single parent, but I didn't want my son to die, either. Sometimes we don't get to choose. But I do get to choose what to do now, and I just want to enjoy my kids. They're the greatest blessing imaginable and I'm so excited about being able to get home, get Evany home, and start life with my family again.

I'm also incredibly blessed by each and every one of the NICU nurses. Tonight when I went to see her, they had made her a personalized Christmas Stocking. The other day when I went in, one of the nurses had gone shopping at Babies R Us and cleaned out their preemie section for her. I feel so good about leaving here upon discharge knowing that she is in their very capable hands. They go above and beyond, and when my kids walked in tonight to see their sister, no less than three nurses ooohed and ahhed over how much they had grown since Seth was in the NICU. They have all stopped into Evany's room at one point or another to talk about how well she is doing, especially compared to her brothers. It is so great to have her here, and if I can't have her at home, there is no place I'd rather have her than with these wonderful women.

Sidenote 12/4/09: I think my favorite part of this post is that it was written on the monthly anniversary of the day my husband left and for the first time, I didn't even remember that it was "that day" until after it was already over, and I had no idea what day it was when I wrote this post. Now that's a first. Yay for small victories.
blog comments powered by Disqus
Related Posts Plugin for WordPress, Blogger...