Tuesday, March 11, 2008

Update and Q&A

Tricia continues to do well. She set a new personal best with 10 laps around her floor yesterday, which is 2/3 of a mile. We're aiming for 1 mile by next week. She's been to see the baby almost every day for the past week, and can hold her as much as she wants.

Gwyneth Rose broke free from contact isolation yesterday with her fourth negative MRSA swab! It was so good to finally be able to touch her skin-to-skin again. She needed a blood transfusion yesterday, which meant the had to skip a feeding and put her back on the nasal cannula, but hopefully she'll be breathing on her own again soon.

She had another eye exam, and she is developing Retinopathy of Prematurity (ROP) which is very common in premature babies her age and size. They will give her another eye exam next Tuesday, and if the condition is worse, they will recommend a laser eye treatment which has good success at correcting the problem.

Q&A

>
Gwyneth's hair looks anywhere from bleach blond to red to brown depending on the light and the editing affects I use on the photos. From what I can tell, it's a little darker than it was when she was born.

> Here is a post in which I talk about our own CF screening.

> Several states in the US now require CF screening for all newborns, but many do not. I think it's important for every potential parent to be aware of the possibility of CF. You can find out more about CF screening for newborns Here.

> Neither Gwyneth and nor Tricia are "out of the woods" by any means. Gwyneth still has at least two more months before she'll be cleared to go home, and that's best case scenario, and Tricia's biggest challenge yet is upcoming with the transplant surgery and recovery. They are both in extremely vulnerable conditions, and it would not take much to cause either of the them to have major issues.

> I did "claim" my blog on the blog award website, but it looks like it didn't do anything...

Nate

30 comments:

Karen (Pediascribe) said...

Yeah, glad to hear that baby is going to get some skin to skin lovin'! ;)
Thanks for the update!

Meredith said...

Keeping our fingers crossed for a BIG WIN!!!!!
Meredith

Hollee said...

You are continually in my thoughts and prayers. All of you!

I did my "For Tricia" list. Not an exhaustive list, by any means, but a good start!

www.holleeh.blogspot.com

Julie Stanton said...

Just wanted to say I'm still praying for you all and check multiple times a day on you! I just added my wishes for Tricia under that blog entry below. I'm so glad everyone is doing so well!

Julie
Sydney 3 1/2
Isabelle 7 months

Brian & Amy England said...

Okay, I just went back to read the post about CF testing and saw that you guys are planning on using Sign Language with Gwyneth!!
I teach Sign Language at a high school.
It will be so amazing for her cognitive development!! Just keep in mind her "signs" won't look exactly like yours..so you have to "interpret" a bit.
Glad to hear that the Girls are doing well. Still prayin' in Texas!

My Life With Boys said...

Your family is beautiful! We just recently found out my nephew (he's 6 1/2 months old) has CF. Your blog is very inspiring to me. Keep up the good work!

grey like snuffie said...

as a mom the best part of this update---that Tricia can hold Gwyneth as much as she wants.

Lilith said...

Not sure if you answered this before or not, but how do they do an eye exam on babies? I'm guessing it's not the normal, "which looks better, #1 or #2"

amangoprincess said...

Yay for Gwyneth being taken off isolation! That is awesome news! Regarding the CF screening process, it is actually better for parents to to get screened for possible hereditary or genetic disorders BEFORE planning a pregnancy. That is what the OB/GYN office I work for recommends and they offer CF screening as well as other genetic /hereditary screenings before moms plan a pregnancy. I think it's great that you do your part to educate others about CF ! Way to go Nate!

Candy said...

That is so great about Gwyneth's 4th negative swab! I'm sure it feels fantastic to really hold her again, skin to skin. Thanks for all the updates and Q&A's that you do. You certainly don't need to do it, but know that we appreciate it and you guys letting us into your world. God bless you all!

cmziall said...

WOW! Tricia can probably walk further than me! LOL! I'm so proud of her an Gwyneth, they continue to make awesome progress and I anxiously await your post "The Lungs Have Arrived"!

Michelle in MO

mom2izzyandallen said...

Still praying for you all. I enjoy all the updates and continue to pray for the perfect set of lungs, the family of the provider, and a fabulous recovery for your wife.

The Beaver Bunch said...

This is not directly related to this post, but I just wanted to tell you once again, (for probably the billionth time), that God is using your story to affirm things in the lives of strangers!

I finally made it over to YouTube to watch some of your videos and the 1st one I came to was Creative Choices. Although I knew Tricia was adopted, I didn't know that she was in foster care, much less that her foster parents were the ones that adopted her! My husband and I will attend the 3rd night of Foster Parent classes tonight, and I am amazed at how God continues to affirm to me that we are going down the right path. Thanks for being a tool in the hand of the Greatest Carpenter ever! Still praying...

ChattinIM said...

Hi. I just wanted to tell you that you should be prepared for Gwyneth to come home before two months if all is well. Hospitals always tell you not to expect them to come home before their due date, but most kids do. I have preemie triplets and know a lot of preemie moms. Mine were 36 weekers and 2 came home with me, 1 came home 3 days later. It is very common for preemies to be able to come home any time after 36-37 weeks. I am praying Gwyneth will be one of the lucky ones. Since she is off all breathing support most of the time I would think she has an excellent chance to come home closer to one month than two.

Just curious, where will Gwyneth go and who will take care of her is Tricia is still in the hospital? I pray Tricia has some nice new lungs before Guyneth is ready to leave the hospital.

Lori

Rick Lawrenson said...

For Lilith (and others wondering about eye examps for preemies or any baby for that matter...)

They're not checking for how well they can see. Right now Gwyneth doesn't "see" like we do because her vision isn't yet developed. (Google "What babies can see" and there are several good sites that explain newborn's vision.)

But similar to my eye exams, her ophthamalogist looks "into" her eyes and searches for any abnormalities (ie. ROP).

Katy said...

I love the picture of Gwyneth peeking from behind the blanket-SO cute! I voted for you in all the categories!

Michelle said...

On the link for ROP it has a risk section. Does this mean she might develope these or she has some or all of these risk factors as well. What stage is Gwyneth?

Deb said...

Our preemie was diagnosed with ROP as well, but is 'fine' now. If Gwyneth is not getting too much extra oxygen, it shouldnt get too much worse, since that is the major cause of it (or at least that's what they told me). They just told us that ours will probably need glasses eventually.. so many people do anyways so its not a big deal.
I'm so glad that you can touch her again! What a relief!
And I know that Tricia is in PT, but 2/3 a mile is a lot.. quite impressive... go Tricia go!
We pray for you all the time!
Deb

Tamara M. said...

Hope everything wil keep going like this.

I think it's logical that Gwyneth has to stay 2 months in the hospital, if she weren't born yet, she also had still 2 month's to go, isn't that right?

Keep my fingers crossed for you all.
Tamara

nurse jen said...

HOORAY!! I am so excited to hear that 'the girls' are doing well. :)Little Gwyneth is getting sooo big! Watch out, Mommy and Daddy! She's going to start taking bottles before you know it! (Our NICU starts at 33 weeks corrected!) WOWSERS! Then, she will be home before you know it if she eats well. My guess is well before 2 more months! Most preemies go home around 35/36 weeks if eating goes well. I am praying for her ROP, as well! I am glad to hear that you are all well.
My prayers continue...

jen

Donna said...

Prayers for Gwyneth's eye-sight to be spared. I'm glad Trisha is building up her endurance, that's wonderful. I might buy a fraggle hat as a gift for a friend. I'm a sucker for home based "Mom" stores.

Cheryl said...

So glad that you guys can have skin to skin again! Is Tricia able to kangaroo with her yet? I hope that her eyes stablize for her. She seems to be doing sooo well, what a trooper she is. I finally figured out how to link blogs, I am hopeful that you will get many many prayers from those who read it!

http://hk-roadhome.blogspot.com/

Jeri said...

Nate, I've been following your blog for about two months now. If you go to http://prayforcoy.blogspot.com/ this is a family of another micro preemie here in Texas. Coy developed ROP and had the surgery. Ann Marie and Chris,I believe that's their names are about a month ahead of you guys. Coy was born Dec.3rd and is now a whopping 4 lbs! It might be helpful for you guys to contact each other.
God's blessings for the three of you, your families and friends. Jeri

kaylee114 said...

Nate,
I was wondering what side effects could/have resulted in Gwyneth from the special CF meds Tricia had to take while she was pregnant? Did the meds cause Gywneth to be born premature? Are there safer meds that they switch her to during pregnancy? I have a friend considering a pregnancy and she happens to have CF too. Thanks for any input!

Karen said...

Tricia needs a new pair of Fraggle Nike's to keep the bounce in her step once she rounds the mile marker!

Always praying-
Karen

TsMom / Durbette said...

Thanks for the update!
Always praying for you, Tricia & Gwyneth - what a family!

By the way, how are Gwyneth's lungs doing? I know one of the peds lung docs down there -- he used to care for my daughter.

Blessings,
Karen

twokiss77 said...

It's so good to hear that Tricia can hold Gwyneth whenever she wants now. Gwyneth needs her mommy so much! I bet now that Tricia has gotten to know her better, she can't believe she had to stay away for so long! I'm so glad that they're both doing so well -- God is so awesome :-) We are still praying!

Twice Blessed said...

Nate,
Both my twins had/have ROP. They were not so fortunate and are still having complications from this terrible preemie eye disease.
I'll pray for little Gyneth's eyes that it goes away on it's own or is healed w/minor laser procedure.
Dana J

Lea said...

Aloha!!

Stumbled upon your blog and just had to say hello, and I'll keep checking in to follow your BEAUTIFUL family!

Your hope and faith is great, and God is greater! Many blessings, prayers and virtual hugs!

Aloha,

Lea
From Honolulu, Hi

wheaton mom said...

Just want to tell you we are specifically praying for Gwyneth's eyes (and that she'd be infection free, too). My daughter got to ROP stage 3, level 2. They told us they would come on a Tuesday to do the surgery. Before they began, they checked her eyes while I waited across the hall. As I read the Bible while I waited, I felt led to Psalm 145:6 -- "yes, Lord, I will tell of your greatness as You do marvelous works" -- which He had indeed done in the previous months and days, much as I see Him doing in your lives, too! Anyway, the nurse came to get me, and as I approached her isolette, the two doctors turned around smiling -- "her eyes are just a little better. We wouldn't have expected it, but we're going to wait on the surgery and just keep following her eyes." So I stood there and gave praise to God while they looked at me like an idiot. She went on to have eye checks for a few more months as there was an "arc of hemorrhage" they kept a watch on, but today, her eyes are healthy though nearsighted (not enough yet for glasses). Anyway, the surgery is a wonderful thing, and I know God is writing His own story for Gwyneth which is her own and unique, but I hope this little story might in some way be encouraging, even if we see His power in different ways in these amazing stories. Yes, Your God is big and good and loves you so!
Thanks for letting us follow your story. It blesses us each day, and we love to pray for you all!