Wednesday, July 22, 2009

Gaines' Condition Update

I don't really have much of an update. Gaines is having a really good day but really not much has changed today. Gaines really seems to be taking to his new cannula. I found out today that it is a high flow/high humidity nasal cannula and it is a lot like CPAP. It offers more pressure like CPAP which Gaines really seems to respond to. I think I'll update you all on Gaines' condition. I don't know that I've really done that in a while...probably because I am only now coming to really understand it.

Gaines' lungs are not like regular 29 week preemie lungs. His lungs were/are much, much worse. A normal preemie has immature lungs...Gaines were immature as well but they are also hypoplastic. This link (http://www.pediatricweb.com/seattle/article.asp?ArticleID=829&ArticleType=9#1) does a good job of describing the differences in immature and hypoplastic lungs. His lungs are like this because my water broke so early and he was without fluid for so long not because he was premature. I was blessed to hold off on labor for 5 1/2 weeks but those were 5 weeks that Gaines' lungs didn't get the practice breathing.

I know your next question...would I have been better off having him at 24 weeks? The answer is no. If he had been born when my water broke we'd be fighting an immature lung battle, possible brain issues, possible sight problems etc. Obviously there are 24 weekers without these problems but because of Gaines age and size we didn't have to fight many of the battles that we very easily could have.

Anyway, we have seen several doctors along this journey. Four that we really trusted at GW and three (so far) here that we are learning to trust. While all of these doctors have differing opinions on the best way to actually treat Gaines' lungs, they all agree on his problem and they all agree that his recovery is going to take some time. It could be several more months before he is ready to go home and even then it will be on oxygen and it could be for two years or so. Obviously we hope not but it very easily could be that long.

I'm not sure if I ever passed this along but it can't hurt to tell it again. When Gaines was first born and was having so many problems his doctors told us about three other babies that had similar circumstances as Gaines and that none of them made it. At the time I was under the impression that these had been recent cases. It wasn't until several weeks later that we learned that the doctors meant they had 3 other babies in 25 years with these circumstances. It really makes me realize just how sick Gaines was so early on and how much of a miracle he is now. I said it earlier this week, he shouldn't be here and he is. That is not an accident. God has big plans for this little boy.

I feel very good about where Gaines is right now in his recovery. I really like his doctor this week and I'm very confident that he is doing the absolute best thing for Gaines. I just know that its going to take a while and I'm ok with that (today!). Now that I'm starting to understand more about Gaines' condition I'm much more relaxed day to day as I'm not expecting drastic changes.

One other quick note...Our little 3 pounder hit 7 pounds last night! I tell you...that little boy is so precious. I love every minute that I get to hold him.

Please keep praying.

Love to all,

Brittany

7 comments:

Stephanie said...

Praying! Will continue for as long as Gaines and you need me too!

Diana said...

Praying for all of you! Glad that you guys are all home since this is going to take longer than you thought. God has you and Gaines in His Hands. May you all feel His peace.

AlleyJ said...

I have been praying for you for sometime! I am one of the strangers that came upon your blog by a friend of a friend. I love to see God working miracles in our present day. I think we forget that He still does. Continuing to pray for you and your precious family.

Alley Jackson
Auburn, Alabama

Lori said...

Thanks for the detailed link, very informative. I'm still praying here in Ohio.

MommaWynn said...

I am praying for your family. My sister had a baby July 17 and was only about 30ish weeks. Its so hard to not be there with her as she is now living the hospital life with her baby girl. God does have a plan for your boy as well as my sisters girl. Its just sometimes hard to understand.

I will continue to pray for your boy.

Teri and Jared said...

Brittany and Beau,

I came across your blog and have been following you for a month or so now! God Bless your family. There is hope. Believe in miracles and you will be blessed beyond measure. God is good! I was pregnant with twins. My water broke at 16.5 weeks. I carried both babies until 28 weeks and delivered. We had so many NICU battles. It is amazing we are here. My little girl has been out for 5 weeks and my little boy 8 weeks! I am praying for you!!! God bless!

TERI SELF

Catherine said...

I have been following from the very beginning of the blog (just have not left a comment) Anyway my entire church is praying for you and your family. We rejoiced when you were able to get the medical transfer so soon! I know it seems like this is taking forever, but stay strong...take it a day at a time...and remember how fast those bed rest weeks flew?? This too shall pass and when it does you'll look back and be able to tell Gaines of God's provision and I don't know what better legacy to look forward to!