Monday, January 26, 2009

Eye Numbing & Bible Thumping

It's hard to believe it has been almost an entire week since I last posted- I spend my last waking moments each night thinking about what I'll write about the next day, but then run out of time, and a week flies by....

We're back in the NICU after a small battle. I was really excited to be back, it feels more like home, despite losing our couch, TV, and the ability to have food and drink. Now I'm sequestered to a corner while I watch my baby in a Giraffe (a bubble of sorts- isolette) rather than in an open air crib. If ever the saying, "Two steps forward, one step back", applied, this would be the situation. Coming back to the NICU the nurses and doctors were unable to find a happy ventilation setting for Ms. Grace. They tried the traditional ventilator without success, then the jet ventilator which was equally as unsuccesful, and finally the oscillating ventilator. Grace did well on the Oscillator, except she wouldn't allow the machine to do all the work, so she kept attempting to breath over the machine, or behind the machine. She would do what they call see-saw breathing, which is type of quick pant then long breath style. Late yesterday they attempted to go back to the traditional ventilator- SUCCESS! She's so much happier and feels better. She had a rough night last night, she was still not getting enough oxygen saturation even @ 100%, so they think it's pain, not lung related. After an IV dose of morphine, Grace conked out and went to sleep happily. Now she's down to the 40's range, and they are talking about taking her off the vent!!! I have learned not to get my hopes up, as I am usually dissapointed, so I'll plan for her being on the ventilator for another week or so.

Grace had her eye exam today- OWIE!! The eye doctor numbs her eyes, then puts a spring-type mechanism on each lid to keep them open, while he moves her eyeball around with a speculum- ick!! Good news- her eyes are almost mature, with absolutely no signs of retinopathy of prematurity. I couldn't even tell you what that is, only that it's a very good thing. I've learned through this process of being in the hospital- NEVER read about what could happen- it will depress you, worry you and haunt you. I vowed to only read about what is happening, only after we have the official word- there is absolutely no use getting myself and my family worked up for nothing. For example, when Grace was first born, the docs let us know that her heart condition is often related to a specific gene disorder. I requested the materials about the disorder, but vowed not to read them. My mom and Pam, on the other hand, did read them. Every day they would ask me if the results had come back- I didn't really understand why they were so interested, but when they came back negative, both of them started to cry tears of happiness. While I was cleaning out my diaper bag I found the material, flipped through it, and thanked God that I had not read it- very grim things....

Grace's chest tube is set to come out today. From what I understand, this is one of the most painful things that people endure- the chest tube is hooked up to a sort of vaccuum, so your wound is continually being suctioned.... She definitely favors the alternate side- the side without the tube. She was going to have the Broviac removed today- the central IV that's stitched into her thigh, but they're thinking tomorrow, so that if she has another pain episode tonight, they can give her morphine intravenously.

All of this seems like such good news- I feel like we're really making progress. Unfortunately, I may be a bit too optimistic! I spoke with Grace's NNP and MD and told them that my family was coming to visit March 14th, and did they think we'd be home by then. They told us that barring any unusual circumstances, infections, etc we'd be cutting it very close- SERIOUSLY?!? That's almost 8 weeks away!!! It's so easy to get frustrated about this, I often do, but then I remember the alternatives- coming home too early and being back here too soon, being at a less-capable hospital, or not even knowing she had these issues. God helps me put things into perspective. I say it often, but while I would NEVER wish this experience upon anybody else, I do thank God that we're here at this hospital, with the excellent nursing staff. Grace is spoiled beyond belief!

She's getting so big- it's funny, her head is so much bigger than her body, like a little bobblehead. :) She has the longest fingers and toes- she's destined to play the piano. She's over 5 pounds now- well on her way to becoming a big girl! She's eating the most she ever has (fat-free formula) but she's doing well. Hopefully, if the ventilator comes out, I will hold my little angel later this week.

Life is good- stressful, frustrating, dark at times, but good. I've learned that my worrying is for naught- I have no control over what could or will happen. My faith has been brought into question throughout this entire experience, but I think in turn, it has made me more faithful. To some of my friends, I probably sound like a Bible-thumper now- and that's probably a shock to many of you, and maybe I am, a bit. However, you simply cannot go through something of this magnitude and watch the amazing changes that I have seen and held, and doubt. God is here, and God holds Grace's and my hands every day!

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