Tuesday, February 5, 2008

Update and Q&A

Tricia got about 10 hours of sleep last night! She's already getting sleepy at 8:30 tonight. She sill has some catching up to do. She was feeling a little sick earlier, but is feeling better now. She received a blood transfusion today because she has been Anemic for several days...this will help prepare her for the transplant.

No word from the transplant team today, so we'll assume that we haven't been listed...

Gwyneth was back on the CPAP today...didn't do so hot on the nasal cannula last night, but that's not surprising at all at her age. Other than that, she's having a great day.

Time for some more Q&A!

> I use a Mac software called iMovie to make the videos that you've seen on this blog. As far as video editing software goes, it's junk, but it gets the job done for what I'm doing on this blog.

> When Tricia was born in 1982, the age expectancy of a CFer was in the lower 20's...the life expectancy for a CFer born today is in the mid 30's. It's because of this reason that CF has been labeled as a pediatric disease, and why it does not get nearly the exposure as other terminal diseases. So, Tricia has lived beyond her age expectancy. We have heard of a few CFers who are still alive past 50, but as I've mentioned before, every CF case is different...some are incredibly aggressive, and others are so mild they're not even diagnosed until adulthood.

> Tricia has a horrible memory for dates and times, so those of you who think she's all right about her side of our story are suckas... ;)

> We did get several weeks while Gwyneth was still in the oven to feel her kicking and moving around. Most mothers can begin to feel their baby moving around week 17. Tricia felt her for the first time on Thanksgiving day, here in the hospital.

> This blog is not one on which I want to get into deep theological discussions...that doesn't fit it's purpose, and I'm not smart enough to answer most of your questions anyway.

> I did send an email out to the K-Love contest, but only because somebody asked me to via email a few days ago. I don't listen, so if they mention our name, please let us know.

Joe and Kendra's preemie boys continue to do well. BJ and Tonya's preemie boy was having some difficulties this past weekend, but I haven't seen them in a few days. I know they would all appreciate your continued prayers.

Alice continues to do incredibly well...she was actually discharge from the hospital, which is amazing. If you want to read some great insight on what a TX patient experiences, check out Her Blog!

Thanks!

Nate

19 comments:

Jenn said...

Still praying for all three of you!! Tricia, it was so good to hear from you... and we all know the girl's version is always more truthful! :)

E :) said...

My best wishes go out to Tricia, Gwyneth and yourself. A very close friend of mine has CF and also a cousin - I'm very familiar with the condition. My friend had a double lung transplant 9 1/2 years ago at the age of 21 and her lungs are still fantastic. My cousin is now almost 60 and although not 100%, she's still doing pretty well. I know Tricia will end up doing just as well as my loved ones.

sara said...

thanks for the update. as always we will continue to pray for you and your family. :)

YAY!!! for once i'm not numbered in the hundreds, lol

Patty said...

Thanks for the updates Nate!! And for the comment on my blog, you made me smile today, and I needed it. :) As always I am praying for you all.

Patty said...

BTW, where is our week 4 picture of Baby G and her pug? ;) Happy 4 weeks to the beautiful baby girl!

Tracey said...

What a beautiful family. I pray that everything goes well with both of your gorgeous girls:)

Anonymous said...

I posted on an earlier post, just a sweet reminder....it's *TUESDAY* and......well, on *Tuesday* we celebrate Gwyneth with a picture with her pug.......to see how she has grown.........and some of us do look forward to that.........when you have the time.
:-)

weavermom said...

This seems like an appropriate post to share this - the reason I'm addicted to your story (other than your general awesomeness ;) )- is that my mother had a sister that died of CF when my mother was 4 and her sister was 2. She was one of the very first diagnosed cases.

I'm older than both of you, so it was quite a long time ago - more than 55 years ago now. The advances made blow me away. The idea that someone with CF could live as long as Tricia has and have a child of her own is just amazing! Beautiful! A true miracle.

I've enjoyed all of your blog - your love for each other is refreshing and contaigious. Your love for the Lord is obvious. Your human-ness appealing.

Thanks for updating so often! Praying for you, Tricia, Gwyneth, Agnes, the doctors, ... Praising God that Tricia is getting some much needed sleep.

The Phillips Family said...

Thanks for staying so real. I still continue to pray for strength for everyone involved. Your love for each other and for God amazes me. Keeping you guys on my mind and in my heart

Anonymous said...

I hope you win the contest!!

Will's Mommy said...

I stumble across your blog and my heart and prayers go out to you. Nate, you must be an amazing person for God to entrust you with these 2 beautiful women in your life. I gave birth to a micro preemie at 23w6d gestation on 11/1/2007 and our sweet precious baby Will lived for 30 grace filled days and his now an angel in heaven.

May God give you the strength and guidance you will need to power through this time. He only gives what we can handle and only gives it to the people who are strong. Bless you!

Aimee Hensley
www.ourlittlemiraclewill.blogspot.com

Elise said...

I am still praying...

What is really making me think harder about your family is that Tricia is my age...and it breaks my heart to even begin to imagine what your family is going through. Your family is truly STRONGER than you know.

I am praying for you,Gwyneth and Tricia!! God will bless your family!!

Awesome Mom said...

I can attest to some CFers living past 50. My uncle had it pretty mildly but did end up with a lung transplant. Sadly he died last year due to the lungs failing. He was very lucky that he did not end up worse as my grandma smoked in the house. This was of course before it was considered dangerous but my mom is still feeling the effects of it and she is healthy otherwise.

You guys are in my prayers!!

Thoughts and Things said...

I read in Readers Digest last night about how prayer helps patients. I will quote it for you:

From the February 2008 issue, page 66,

"Healing from afar? No one knows for sure how the mind-body connection might make this leap, but praying for someone who is sick really seems to work, according to a recent Arizona State University review of 17 studies on people with heart disease, cancer, infertility and other conditions. -Patricia Curtis"

I thought that was pretty neato!

Apryl in NC

Bo from Florida said...

You can call us any name you want... I still believe Tricia's story over yours! ;O)

Tammy C said...

Amazing how science has progressed about people overcoming diseses and living longer!Glad to hear that Tricia has lived longer then expected.

My mom died of malignment melonoma when she was 41 back in 1965 .now people live for years after being diagnosed with it,So hang int here with Tricia and Gwyneth!!

Destini said...

I was just curious to know how often you are able to physically interact with the baby...from just touch to the kangaroo care. I know they are careful to not over-stimulate preemies. I am so facinated by the medical technolgy we have. My brother was born prematurely in the 70's. He was 8 weeks early. He was given odds of survival quite similar to those of your baby's being born much earlier. Please do not feel obligated to answer. I don't expect a reply any time soon, as you have much more important things to do. I was just curious about the interaction portion of the baby's care.
I am praying that you stay encouraged and that Tricia will continue to gain strength and decrease the dependence on the vent and the baby will continue to grow and develop.
Have a blessed day.

Anonymous said...

Oh, wow, you entered the contest! I wondered if others would suggest it, too, and worried the idea would seem silly! It seeemed appropriate after reading your story though! I listen to KLOVE a lot, so I'll be listening for your names!
I am not a blogger -- the only one I read regularly is Beth Moore's (at lproof.org, click on blog if Tricia is a Beth Moore fan, by chance). That's where I read about your blog a couple of weeks back -- under one of the comments there, someone mentioned to pray for you all.
We continue to pray for you daily. I posted a while back to tell you my 7 1/2 year old daughter especially prays for you. She was a 27 week preemie -- I figured out she was 8 days old the day you met Tricia!
Thanks for sharing your story. God is using it abundantly for His glory, it's so obvious. He's equipped you for the road you are on, and I pray your faith will be steadfast, immovable, and strengthened day by day.
Praying with confident expectation! Is. 40:25-31
Blessings from Wheaton, IL

Kalani said...

Hi,
What kind of video camera do you use with your Mac? I am having compatibility issues with mine. Praying for you guys in South Florida...