Sunday, May 18, 2008

Update

We are loving having Gwyneth home with us! It's been amazing to see the timing of everything. Had she been discharged earlier, Tricia would have been too weak to do much with her. If she were discharged closer to when we are hoping to go home to the OBX, we wouldn't have all of this time to spend focused on her. God continues to bless us.

The trip home was very good. A video camera met us on our way out, and I've heard rumors that we were on ABC11 again, but I missed it and haven't found it yet on the website (I'll let you know if I do find it). Gwyneth was sleeping by the time we made it to the car, and she slept all the way home.

The whole first 24 hours was a little strange as both Tricia and I kept consciously looking/feeling for all of the monitor feeds that have been strapped to her for all of those weeks...it's incredible to be able to pick her up and carry her around anywhere we want to. When we got home, I sat in the glider with her and started crying.

She came home with several meds and a few breathing treatments. Everything is to help her as she continues to catch up with her development. She has what is called "Chronic Lung Disease", which basically means that her lungs are still underdeveloped (for a newborn 4+ weeks after the due-date), a very common thing for a micro-preemie. It sounds a lot worse than it is...she has a little trouble catching her breath when she's very active, and should grow out of it within a few years. It should have no affect on her continued development.

She has breathing treatments just like Tricia did with her CF, with some of the same drugs that Tricia has been on. She should hopefully be done with the breathing treatments soon. (and, because I know somebody's going to ask...again, Gwyneth does NOT have CF)

All that means that there is a little more to remember to do than with a normal infant. All of her meds are liquids that are mixed in with her food. She's eating ad lib, which is about every three hours. She was transitioned completely off donor breast milk and onto formula over her last few weeks in the NICU, and other than a little gas (which is also normal), she is doing great with her feedings.

I've been feeding Gwyneth throughout the night, letting Tricia get the sleep she needs to continue recovering, and for the most part, she is sleeping well and letting us get plenty of sleep. Agnes (Tricia's mom) is here for a while to help as we adjust to life as three, which has been a huge help. With Gwyneth's minimal medical needs, and Tricia's continued needs, it can be a little crazy to remember everything and maintain a sense of normalcy, but it's been going very well.

We had our first outpatient Pediatric appointment on Friday. It was just the two of us as Tricia was at PT. Everything continues to look great, and her doc (who was seeing her for the first time) said she looks very developed for her history. We have another peds appointment tomorrow, and an appointment with a pediatric pulmonologist later in the week....it's actually the same pulmonologist that followed Tricia when she was a child at CHOP.

There is always a chance that, if she gets sick or has a setback, she'll be back in the hospital, but every day improves her chances of not having that happen. We are still praying that we'll be able to go home to the OBX within the next 3-4 weeks when Tricia finishes up her PT.

A few highlights from our time home...

> I took her for a walk outside our hotel the afternoon we got home (she was wide awake) and showed her things like her first tree, her first sidewalk, her first cloud, her first helicopter, and her first hot tub. She was very impressed.

> Her first trip to Babies"R"Us. She basically wanted everything...slightly annoying, but she'll learn soon enough to do that kind of thing only around the grandparents.

> Her first episode of SportsCenter...I was sure to point out Mia Hamm and the NY Mets. I'm teaching her to spit at the TV with me whenever the NY Yankees and Dallas Cowgirls make an appearance.

That's basically it. My email is still not sending, so don't sweat if you haven't heard from me in the past few days...hopefully I can get it fixed tomorrow. I'll post some pics when I get a chance.

Thanks!

Nate

84 comments:

Princess Talana said...

Congratulations! Amazing the blessings of God isn't it?

Talana

Laurie Johansen said...

I have never been so addicted to someone else's blog. I am thrilled beyond belief that the three of you are finally home together. My prayers continue to be with you, the little White Rose and Tricia.

Laurie

Jena K Photography said...

Welcome Home Sweet Baby Girl Gwyneth!!!

smilinfree07 said...

I am so excited how God had blessed you guys. I was at LU for a little bit and know some people that knew you guys as well. we all have been praying everyday and i always share your miracle with friends and family and they always smile. thanks for taking your time to blog and keep all your updates to everyone.

Angela said...

Congrats on having Gweneth home with you. I'll never forget when my husband and I brought our son home and having the odd feeling of having "someone else" in our room and that we were actually responsible for him! It was such a strange/wonderful/crazy time! Take Care!

jmbachtel said...

Thanks Nate for this beautiful update!

Angela said...

PS: Sorry I spelled Gwyneth wrong in my post - oops - my bad!

Laurie said...

It is such a blessing to read about your "Dream Come True" Nate. I have prayed for all three of you throughout your stay since Sept. 07, with this time you are in being the biggest desire of my heart. You are Blessed and I am sure the whole world knows this. The Lord is absolutely awesome!!! I love the "crazy" shots of the three of you. Gwyneth has got her hands full in the future:) My prayers continue for you over the next month, praying you home to your real HOME. I love you guys!!

Laurie in Ca.

amy smith said...

how wonderful the semi-unstructured life can be! my eyes well up everytime i think of you both holding gwyneth, and taking her on walks outside. god is good-- ALL the time.

joygross said...

Soooo happy for you guys... what a blessing to actually have her to your selfs... but in the same instance I am sure it is a little scary... but you will get over that I am sure. I just love coming here to hear about all your successes all three of you are having... I can totally imagine what it was like sitting down holding her crying. I did that when my son was born and he was only there for 9 days... bless your heart Nate.

daynawalker said...

Oh Nate I have to tell you I was rolling over the comments of Babies r Us and spitting at the TV. It is sowonderful that you have maintained your sense of humor through all of this. Tricia as well, I am sure you are forcing her to look silly in some of the pictures. :)
Your story is inspiring!

Chelle' said...

So great to hear how everyone is transitioning to home.

Maybe it's a guilty pleasure of mine but I really like the Dallas Cowboy Cheerleaders....

You're her dad though and if you say no..... :0)

raysoflight said...

So glad that things are going well for all of you. You really had us laughing about the Yankees and the Mets. LETS GO METS! : ) Praying for all of you!

weavermom said...

This was so fun to read! It's great to hear your perspective and hear of you and Tricia getting to be "normal" parents. It just makes my heart smile.

Paul and Christy said...

You go Nathan. Show her all the important stuff. Tricia, I feel a mall trip coming on sometime. That is a mom's job. I am so proud of you both. I know how hard it was to come home with a new born. Add meds on to that and it does get a little time challenging. Nothing you guys can't handle. You all are already pros from the sound of it. This is an awesome happy post. Life really is good.
Christy in KY

Kristen said...

Awww, that was wonderful to read! I'm so happy for you guys...God is kind.

e_susan94 said...

Here is the link to the news. I googled your names and the channel and it came up to this!

http://abclocal.go.com/wtvd/story?section=news/local&id=6137491

I'm a new "fan" of your blog. :) I'm sure you have a 1,000 emails to reply to but I'm the one that wrote that I know your SIL Janet but it's been a while since we talked.

candicesalazar said...

Just a dream....Isn't it?
A wonder!!
A magnificant display of miracles...You all continue to be apart of a beautiful blessing for the world to savor.
CONGRATULATIONS!!!!
Nurse Candice & Co. in Nebraska

Raving Mom said...

Wait until that sweet White Rose decides she can't live without the contents of Toys R Us...Or the junior department at Dillards, or the ladies' department at Shoe Carnival...
Girls are wonderful, expensive but wonderful!
We have a 5 year old who has announced her favorite store is Jared..."where daddy can buy me my jewels"...

Enjoy!!! It's wonderful!
There's truly nothing better!!!

Marsmile said...

Great!! I'm glad everything is going smoothly for all of you, especially with Gwyn home with you two.

I pray all continues to go well, that Gwyn will outgrow her CLD and won't need medications for this condition much longer, that she will not get sick until and even after you all go home to the OBX (I'm sure you'd keep her isolated from places that have too many people and even from those who are sick, so that Gwyn remains healthy.), and that you all continue to get good rest and sleep! Also, that Tricia's PT and healing continue to be successful. :-)

Thanks so much for the update and enjoy your evening!

Marissa :-)

Two blessings from above said...

Sounds like you are having a great weekend.
I am so happy that everything is falling into place.
I will join you in praying that the 3 of you will be home, to the OBX in the next 3-4 weeks.

gibsonfam said...

I laughed out loud at your NY Yankees comment (Red Sox fan here). So glad you're all doing so well!

Mike and Jenn said...

I'm so happy for you three!!! Praying all continues to go well!
~Jenn

Rebecca said...

Nate, thank you for being so generous with us and sharing these details.

God's timing really IS perfect.

Congratulations -- again. :)

Just Me - MJ said...

Such joy to read of your first few days with both of your beauties out of the hospital, finally! Enjoy teaching Gwyneth all about this great, wonderful world of ours - it sounds as if you're already enjoying every moment of it, which is exactly what you should be doing! Continued prayers and best wishes to you all!

Lauren said...

This blog is the most amazing story I have ever witnessed. It's been like watching a movie or reading a good book where you're praying (to the scriptwriter or novelist) not to end things badly. Only this time we were all praying to the One who can truely make a happy ending. May God continue to bless you all every day!

Thoughts and Things said...

Ya know, if you let her spit at the tv, she will want to spit at everything! My husband used to do "blllt" with his tongue to amuse our daughter, and that was almost 4 years ago, and she still spits all the time!

Couldn't be happier for you (all three of you!)

Apryl in NC

Raelyn said...

Oh man...and I always liked you until... but now you dissed the Yankees.... J/K

Mary said...

Sounds like good times all around. GOd is so good. We'll keep on praying for ya'll.

Mary (and Tori)
Florida

Edwards gang said...

Sounds like you're having some SWEET family times! Savor every moment! :) We're continuing to pray for Tricia's strength and recovery and for Gwyneth's continued development. Yes, God's timing IS amazing!! And to think, some people think these things just happen by chance!?! Keep enjoying your beautiful miracles. We love to hear your updates!

Love and continued prayers,
The Edwards

Amy said...

She's going to be a Daddy's Girl, and I would imagine it will totally melt Tricia's heart to watch you with her. My husband will dance around the house with our 6 week old and sing to her... the other day, he had the videocamera out taping her doing the Thriller dance (assisted, of course). It just makes me love him that much more. Enjoy the firsts... and I know you both will not take a moment for granted.

Continued blessings to you and your family!

Lockwoods said...

What a great update! I especially loved Gwyneth's first sidewalk...that had to be a very special moment. :)

TheRagan3 said...

I can definately empathize with you and the coming home without any machines to tell what is going on with your child. I don't know that I slept much the first few nights my son was home - after much less time in the NICU. Kept getting up to check on him.
May God continue to bless you as you enjoy and revel in what parenthood is all about!

azarrella said...

LOL!!!!Ilove all the things your are already teaching her!So happy that she is home doing well!

Emily said...

Nate, Tricia & sweet baby Gwyneth,
What an amazing time you must be having. Your family all together & everyone is doing so well! I really am so happy for all of you & I am still so amazed by your family! I love reading your story because you don't leave anything out & you're so descriptive of all the events you are experiencing. I will keep watching & reading!!!
Emily

L&DRNKY said...

God is so good. I keep you guys in my prayers that you will be able to go home soon.

TheRagan3 said...

I just followed the link by e_susan94 to see the video of your ABC story. To hear Tricia's voice - it made me cry! What a sweet day it is for you, Nate, to have both your girls home together. We are rejoicing with you!

Kim said...

This is just so amazing-I'm glad this was God's plan!

Allison said...

I have been reading your blog since around the beginning of the year and just wanted to thank you for sharing yourself and your beautiful family with all of us. I couldn't be happier that you have both your girls home with you. I loved reading about you showing Gwyneth God's creations and the beauty of the world (and the evil of the Yankees...;) ). You and Tricia are and will be wonderful parents.

The Farrell Family said...

Thank you so much for the update, Nate!!! We are so happy that all is going well. We continue to keep you 3, in our thoughts and prayers, as you continue your journey towards getting back home to the OBX. God bless!

~ Rob, Amy, Emily, and Ryan Farrell

The Gang's All Here! said...

I'm so happy for all of you - congratulations! Those first days home are so precious for any new parents, but for you guys?! wow. Praying for a beautiful, healthy, smooth and exciting (in a good way!) transition to "normal" for all of you!

Michelle said...

You make me laugh...You've got this Daddy thing down pat! Your little girl puts a huge smile on my face...

The Gang's All Here! said...

Oh yeah. And a great big shout out to CHOP - we <3 CHOP! Especially when we hear happy stories like Tricia's!

SamuelnKari said...

we are so thrilled for you and your girls. This has been and amazing road for you and what a blessing you have been to all of us. Gwyneth looks beautiful and so does Trish. is that a new hair cut we see:) well anyways.... looks great. My little Meg has just went to bed and it seems that all she does is babble babble and babble and i love every single second of it. i love what you said about walking with her and pointing out everything. you are creating a babbler:) so happy you are home. Kari

Tammy C said...

Glad to read that ypu are having such a fun time with Gwyneth!

kclouhoo07 said...

So through my addiction to your blog, prayers for your family's health and well-being, the strengthening of my belief in miracles and the happiness I felt at hearing about God's work, I had no idea you are a Mets fan! Yech! :p

Congratulations on having your beautiful girls with you. I really am so very happy for all you. And go Yanks! :D

albawab said...

Congratulations on your "new" normal life. Isn't normalcy wonderful? I am so thrilled for all of you, and pray that everything continues to go smoothly. Thanks for sharing your girls with all of us!!

r.a.w. said...

You're teaching her well (though your choice of the Mets is questionable - heehee - spoken by a diehard Phillies fan). So glad she's "home."

Angela R. said...

Nate, thanks for the update. Tbat is great that everyone is doing well at home. So happy for you all!! :)

-Angela

Patty said...

Praise God...this has been a most awesome, enjoyable and amazing journey to watch.

Thank you for sharing your miracle with us!

Blessings From Above said...

Thanks for the updates.

God is amazing!!!

Rene said...

It sounds like you and Gwyneth are having some wonderful bonding moments! I know all too well about chronic lung disease. Tommy is a preemie and has it as well.

May there be many, many more bonding moments for your family! Thank you for the wonderful update.

Rene

Heidi said...

Such wonderful news!! I am so happy that things are getting to a more "normal" place! Continuing to pray for you all! HUGS!

Kate said...

I'm glad you're all doing well. You have an great sense of humor!

Rick Lawrenson said...

chelle' said: "Maybe it's a guilty pleasure of mine but I really like the Dallas Cowboy Cheerleaders.... "

chelle' - he wasn't referring to the cheerleaders.

Here's a hint: we're Redskins fans.

fuzzandfuzzlet said...

omgosh The pedestal just crashed.... hard. I thought you were perfect. You. Don`t. Like. The. Dallas. Cowboys!!!! I am shocked.

I hope Gwyneth grows up to be a huge cowboys fan... just to spite daddy ;) lol

I am glad she is doing so well.

fuzzandfuzzlet said...

omgosh The pedestal just crashed.... hard. I thought you were perfect. You. Don`t. Like. The. Dallas. Cowboys!!!! I am shocked.

I hope Gwyneth grows up to be a huge cowboys fan... just to spite daddy ;) lol

I am glad she is doing so well.

fuzzandfuzzlet said...

omgosh The pedestal just crashed.... hard. I thought you were perfect. You. Don`t. Like. The. Dallas. Cowboys!!!! I am shocked.

I hope Gwyneth grows up to be a huge cowboys fan... just to spite daddy ;) lol

I am glad she is doing so well.

a_weak_rose said...

I love hearing you guys in total parent mode! Not that you weren't before---goodness! But having Gwyneth OUT of the hospital and with you 24/7 is SO cool and happy all at the same time!
PS---I for one, would like to advocate for Gwyneth and say that I think you should buy her every toy in Babys R US! ;)

Jim in MO said...

Love you guys! thanks for sharing your two find girls with all of us. God is SO AWESOME!

Jim C
SW Missouri

Jen in Al said...

Wow, what an incredible weekend you have had!! thank you so much for the precious update! feeling such incredible joy for all 3 of you! continuing to cover your sweet family in prayer! just so amazing! praise God! jen in al

jamie said...

Hmmph. Redskins fans hu?? Well, do THEY have a quarterback that can sing "Take Me Out To The Ballgame" and have it bring tears to your eyes???? p

(I'm guessing Tony Roma's warbling didn't make just our news down here! ;)

I'm sooo happy for y'all.(In spite of the Redskins thing...)
God Bless you all
Jamie in Texas
'

Heather Paulsen said...

Yes an update! I was waiting for this update...just a how's-life-going-update. Sounds like things are going so well...great new!

heather

Oceangoddess said...

Continued blessings to you, Tricia, and the beautiful little one. I'm so happy to hear you so full of joy and so happy you are all together now. Light,
Kimberly

Jan Scholl said...

Is the baby on any sort of monitor at night? My neice a two month preemie was on one for a whole year.

Gila said...

Sweet! Don't forget to teach her to cheer the Washington Redskins!

:)

Scott said...

Nice father/daughter bonding moments, especially spitting at tht TV! Congrats Nat and enjoy each moment.

Cindy said...

What a blessing you have Nate! Actually two!

Loving your blog--thank you for sharing so much of your lives with us!

Praying for your family daily!!
CindyO.

Briana said...

So glad you are all having a great time enjoying your little princess!

Keep teaching her to spit at the TV when the Yankess come on! (We are Red Sox fans here) We actually potty trained our boys by telling them that only Yankees go in their pants!

The Smith's said...

I know you have been busy! I check often for comments but this long update was nice to hear. I am so happy for you guys and continue to pray for your family that you can return to the OBX soon.

www.smithfamilyx6.blogspot.com

www.poundsforCFF.blogspot.com

Andrea said...

Nate and Tricia,

Your family is such a blessing! So glad you are finally able to be at home!

P.S. Saw JC's photos of you guys - beautiful!

Luckeyone said...

Yeah!

Pride and Joys said...

Nate and Tricia,
Congratulations on all being home! Absolutely amazing! I will continue to pray for your family. Blessings all around. all I can say is praise GOD!

Kim

kb said...

I'm so glad I get to share a birthday with your wonderful daughter (much more exciting than Elvis)... and I can't wait to see her personality keep coming out

Adrienne said...

BIG SMILES IN CALIFORNIA! What a great weekend!!!!!!!

scmom (Barbara) said...

Praise be to God. It's been a pleasure watching Gwyneth's progress and I will continue to keep both Gwyneth and Tricia in my prayers. God is good.

twin power mommy said...

I am so happy for you guys! :D
When i brought the twins home from their NICU stay, i had a huge dry erase board that i wrote both names at the top and drew a grid with their meds they each needed to take.
One would have meds at certain times while the other one would have some similar ones, but some different ones to take. The grid really helped me keep track of who got what, when. Otherwise i remember in my sleep deprived state not knowing if i was coming or going with things.
I imagined it being like that for you guys right now, while i was reading about tricia and gwyneth having special medicines to take.
Glad you have a bit of help right now.
Our God is an awesome God...and to HIM be the glory!

~j~ said...

you in the glider with the baby, crying... that sweet Daddy is the best picture ever. Rejoicing with you for that moment...and thanking you from a grateful heart for sharing that..
j

Sue G said...

I haven't a clue how I found your blog, but I have been following it from the start of Tricia's pregnancy. I must tell you how impressed I am with your openness. You share your most precious gift--your family--with us. I am so happy that the three of you are doing well and are enjoying every minute of life. When God brought you and Tricia together, He sure knew what He was doing!!!! Our God IS an awesome God!! Many blessings.

KAL071203 said...

Congratulations, I too recently brought home a NICU baby and it was so bizzare not to have all the wires and the constant beepeing, to be able to freely pick ryan up and take him anywhere! it has been mentioned in the Q&A posts but i'll mention from our experiance with a preemie "wearing" him in a sling or wrap really just keeps him calm and mellow and helps him to sleep better, also he has significant reflux and it seems so much better when he is being worn (less pain/discomfert, obviously his meds help too) anyway congrats enjoy having your family whole and together!

Katie said...

I just want to say that I've been reading your blog for quite a while. I pray for your family regularly. It has been such a blessing to watch the Lord work in so many ways through your life. And I know He will continue to do so.

On a light note, the only thing you've said on your blog I don't agree with is the fact that you don't like the New York Yankees.

Katie

Dos Blessed said...

Congratulations! I'm crying as I remember finally bringing our preemies home, four days a part from each other...what an incredible feeling of joy and elation! Praying for your adjustments as you settle into a schedule of doctor's appointments, meds, feedings, etc. I remember the neonatologist telling me that people wouldn't know their vast history once they were two...they are nearly three....and he was right. Preemie world is behind us, but still close to our hearts. Congratulations and much peace to all three of you!

Berry Patch said...

I'm so happy to hear that you are all home & doing well. I've been popping in from time to time to read up on how everyone was doing. I'm so thrilled that your little one is doing so well! And keep teaching her to spit at the Yankees!!!! ;-) (Lisa in ME)

Betty Rae said...

I have been keeping up with your precious baby girl since my sister got back from Nags Head the middle of January. They were at Nags Head Church the 20th of January. I became a first time grandmother to a precious baby boy on the 16th of January. I feel a real connection to your parents. I am so happy for you, Tricia and Gweyneth. I feel like you are part of our family. I call Nags Head Church our church away from home. We usually are in Nags Head towards the end of July and we always enjoy being with our church family. I pray that God will continue to bless you and keep you in his care. Hope to see you this summer.