After little sleep in the past 24 hours, Tricia has been sleeping now (4:29am) for about 7 hours. YEAH! She is having a few minor issues as well this past day, but I think they should be cleared up by tomorrow. Her family spent lots of time with her today, and that really made for a cheerful day for her, for which I am thankful.
Gywneth had a small setback today with her feedings, but nothing that shouldn't be resolved in the next 24 hours.
Several awesome things as well:
> She was placed on the CPAP and is doing great.
> Because of the CPAP, I was able to see her full face today (without any tubes or tape) for the very first time. She's even more beautiful than I had thought before...
> I was able to hold her again tonight, and after a rough start with her stats, she did well for about 30 minutes before they placed her back in the incubtor.
> And (this is the best for me), because she no longer has a tube down her throat, I was able to hear her voice for the very first time... Just a few tiny, quiet squeaks, but so amazing...
First, a few thoughts about a few recent comments:
> I have only heard from the professionals that the sweat test is the most reliable for determining if a child has CF. A blood test is needed to help determine the kind of CF. I understand that some of you have heard otherwise, but I can only pass on the info that I'm being given by those we trust the most.
> I think I pretty well outlined what I believe about "spiritual warfare" in This Post.
Thanks for all of the questions...I really appreciate being able to share what we're learning about everything.
> I am putting together some audio of Tricia's voice from video recordings from the past to use in Gwyneth's incubator. Tricia's voice is off and on with the trach, and even when it's there it doesn't sound much like her normal voice.
> We are planning on using sign language with Gwyneth because most infants can learn to communicate long before they can learn to talk. Sign language is one of the ways to accomplish this, and it will help her development overall. You can learn more Here.
> Tricia is not able to journal/blog at this time. She's been spending a few minutes each day trying to catch up with her internet life, but it's coming slow. I can promise you that, when this is all over with, she'll have plenty to say.
> Gwyenth's milk is coming from a local breast milk bank. I've been told that there are only 6 banks like it in the states, and you must be close enough to a bank in order to receive milk.
Finally, I've been asked lots of questions about my photography "skills"...here's what I have to say about that:
I've always loved photography. I got my first really nice Canon when I was a freshman in college. I used to take lots of landscape shots and very few portrait shots...I'll try to post some of my favorites from my past sometime. I lost the time and energy to shoot when we got married. Tricia bought me a Digital Canon Rebel XT this past Christmas. Here are a few things I do know about photography that have helped me that past several weeks:
> Go digital and take lots of pictures...I'm lucky if 1 out of every 3 pictures is one I really like.
> Disposable cameras can take amazing pictures.
> Composition is everything. If you're taking a picture of a person, fill the picture with that person and not with other stuff (see the first picture below). If you're taking a picture for perspective, fill the picture with the things you need to achieve that perspective (see the second picture below).
> Lighting is everything. A tip for you future NICU families...the UV light for jaundice takes AMAZING pictures with GREAT details. Fortunately, Gwyneth only needed the UV for about 7 days, but I am thankful that I took advantage of it (see pic below).
> Use lots of crooked angles. Pictures that totally square can get really boring...taking a picture at an angle can add a lot of visual appeal (see pic below).
> Take pictures of the things you love. If my pictures of Gwyneth and Tricia are any good, it's only because I'm in love.
(I was up all night and posted several times, so read below)