Gwyneth Rose is, in the words of one of her nurses, "Eating and pooping like a champ." She'll receive just a few drops of breast milk every 6 hours for about 5 days (she's on day 3, I think), and then they'll reassess and hopefully begin giving her a little more. She's on the lowest settings on the vent, and they should be moving her to the CPAP soon.
Also, she is gaining weight and is actually now above her birth weight for the first time! She's about 1lb 6.5oz. Yeah!!!
Tricia has been having some up and down days since moving out of the ICU. Her docs will not allow her to go see Gwyneth (it's been since last Saturday night), which is something she's having a hard time with, but something that she's trying to understand. She is also still very weak and has not been able to do as much PT as she was doing last weekend, which means she hasn't spent as much time outside of her room as she'd like.
She really needs to gain some weight...weight and strength will be two things she'll need going into transplant surgery that will help her during post-surgery rehabilitation. (I'll post a lot more about the transplant stuff tomorrow)
Tricia is spending most of her time focusing on breathing and on physical therapy. We have lots of books and magazines and games and tv to keep her busy, but she hasn't messed with much of it...it's amazing to me how much time and effort she is putting into getting as healthy as she can.
I've posted a lot in the past few days, an I'll probably be posting a lot in the next few days...the transplant activation could be upon us shortly, and there is a lot that I've been meaning to say that I want to get in before she's activated.
I want you to know that I've read every comment that has been written on this blog (over 9000 of them). Just an observation...I find amusing the comments that start our with, "I'm speechless/I have nothing left to say" and then go on to say more (usually lots more). I'm not being critical...I seriously think that's funny.
Please, know that, while I appreciate all of the encouraging emails that are coming our way, I DO NOT open Forwards...they're just too dangerous on several different levels. I've received several forwards from our blog readers, and I'm sure most of them are great emails, but I just send them to the trash. I'm sorry.
Time for some Q&A:
> While Gwyneth is just now getting some serious breast milk, she has been "feeding" via liquid IV, full of all of the nutrients, etc. that her little body needs. This is the big reason why she has stayed healthy without much growth over her first three weeks. With the breast milk, she is being fed via a feeding tube down her throat.
> You can buy all the baby clothes you want, but we'd prefer that you only send us something if you've taken the time to send me an email to get our address, and even then, I may tell you that we have all that we need for the time being.
> We're working on getting a PayPal account up and running for Tricia's Trust Fund (as several people have inquired about this).
> Feel free to link us and/or post about us on your blog...we appreciate all the help we can get! But, if you're going to mention our story in any kind of publication, please make sure that you get our expressed permission first.
> I'm not sure if grandparents can do the Kangaroo Care in the NICU at this point. Tricia remains on "contact isolation", which means she can't have any physical contact with Gwyneth...this will probably last until after the transplant surgery. I have promised Tricia that nobody else but me will have this opportunity until she is able to join me...it was bad enough that she was about the last person on earth to know of and see pictures of her own baby. :)
> We are planning on using some simple sign language to teach Gwyneth to communicate with us when she is young (and before she can speak). You can read more about this technique Here.
> Tricia has had a feeding tube for about a year. It has helped tremendously with her weight issues (CF patients are usually very thin), and she would recommend it to any CF patient who is struggling with their weight.
> Somebody commented, "My sympathies at the loss of your wife and daughter." Just to make sure, they're not dead. :)
> There are a few different types of ways to test for CF, and there are many different mutations of the gene among carriers which can require multiple screenings to detect. Gwyneth's only test so far has been a blood test that is not completely reliable. The standard for testing among infants is the Sweat Test, and Gwyneth is not sweating yet. I was screened via a blood lab before we were married to discover if I am a carrier of the CF gene, which I'm not, which is why we are not concerned about Gwyneth's possible status as a CFer.
> They say that you can set a goal to have your preemie out of the NICU sometime around their original (40 week) due date. If the preemie does extremely well, their time in the NICU can be cut short, and if there are complications, you can expect a longer stay.
Finally, here are a few thoughts that ran through my head as I was holding Gwyneth last night:
> My heartbeat is the first she's heard in over three weeks...the first since she last heard her mother's...
> Gwyneth is much smaller than my pug (a toy breed) was when we first got her... Below is a picture of me holding Meka the pug when we brought her home when she was just 8 weeks old...above a picture of me holding Gwyneth when she was just over 27 weeks old (gestational). I am in no way comparing my daughter with a dog...just trying to show you exactly how small Gwyneth really is.
> Although I would have preferred to share this moment with Tricia, my second choice was my mom...as I held my baby for the first time, she told me about my birth almost 27 years ago. That was special. Thanks, mom!
> Why God is blessing me in this way is beyond my comprehension.
Thanks for blogging. I think I (along with many others) benefit from it as much as you do.
I'm still praying for Gwyneth and Tricia and I'm happy for your good news this week. Natalie
Ok, so I thought the very same thing as I wrote "I have nothing left to say" then finished the longest part of my comment afterwards. :) I told you, I'm a constant talker. :P
Thank you for more info. I know you're constantly busy and have more on your mind than this blog, but it's so neat to learn so much on a daily basis.
I'm still praying for more miracle.
Nate, I have read your blog 4 different times today and you managed to get me crying on the first 3...thanks for the break! ;)
Anyway, during your next Q&A could you explain the reason Tricia is not allowed to hold/touch Gwyneth. I didn't realize it wouldn't be until after her transplant before she had the chance. I'll definitely be praying about that. I'm sure that has to be frusterating for Tricia.
I have been reading your story for weeks and have been touched more than I can say. I know you feel that people are placing you on a pedestal but I realize you are human....which was so apparent in your video holding Gwyneth and also in your post Afraid of Heights. I believe I am so addicted to your blog because your story gives people hope that things can be okay and even if they are not.....there is still hope for a better day. You are extremely inspiring and the strength of both your girls is amazing. It truly has given me a renewed faith in God. Thank you for sharing your story with all of us and know that we are praying daily for all of you....more than daily....probably each time we visit the blog...which is many! God bless you all!
Nate, it's always great to see the updates, so we can celebrate the joys with you and also know what to pray for specifically too. It's been an honor and a personal growth in my own prayer life to be able to pray for others-- it's a new dimension to my walk that's been awesome, so thank you!
I think it's good that you're honoring Tricia and being the only one to do the Kangaroo care at this time. I'm an adoptive mom (my son came home at 5 months and I'm awaiting my daughter) and it still pains me sometimes that others had the privelege of holding and caring for my kids before me (even though I totally understand it, as a mommy it's hard!). And I'm sure you know the benefits of the Kangaroo care-- it's awesome!
We also used signs for my son to help him communicate (he was born in Korea and was also speech delayed and this helped him so much!)It was really fun, and we discovered the children's videos called Signing Times-- if you can,try to check them out. The creator of them has an amazing story. My son at age 4 still loves the videos!
All the best to you and Tricia and Gwyneth-- I'm very happy for the good news this week!
I just wanted to thank you for sharing such intimate moments with us. My prayers will continue to be with your family.
So glad to hear the great news about Gwyneth! Praying that Tricia will be placed on the transplant list asap and that her strength improves. Thanks for all the updates, your posts are wonderful!
Praying for all of you and may God continue to bless you!
I had to giggle when I read this entry. I think, you probably have a bit more women than men posting comments here. When a woman says, "There just aren't any words...." You know there's more coming!! LOL Thanks for the giggle.
As Napoleon Dynamite would say "Luuckyyyy". Lucky that you got to hold your sweet baby girl!
Your family is doing so awesome. The Lord is blessing the socks off of you all. I pray He keeps it up!
Praying for you - Ashley Black
I have a few questions-
Um you mentioned the blood test for CF and sweat test. I heard the oppsite of what you said- I've heard the sweat test isnt reaible and (duh) Gwyneth wont be big enough to sweat for months to come...and the blood test is more reaible with the expection of genes not yet discovered. Just curious about that.
My daugther (who just turned 3 on monday) has CF and hers was discovered though the blockage at birth and blood test to comfirm. Granted in the NICU we had non CF Center Pulm drs so they kept saying it might not be CF...cause Kiv has two rare matutations commonly paired with the DeltaF508...she has 621G->T and R553X.
Also I know its a private question of sorts- but where is Gwyneth's breast milk coming from? Cause I would think Tricia couldnt be able to afford the tax on her body to do that...though I think its very cruel (but understandable) that she cant see Gwyneth so much nor touch her. Thats got to be so hard for both of them.
Thanks for sharing everything that you have been! For a mom with a child with CF, Tricia gives me a lot of hope!
You nailed me. I'll say, "There are no words." Then, I'll find some. ;)
And you know what? I'm doing it again! There are no words - to do the past couple entries justice - but I have to just praise God one more time for being so darn faithful to shower us with miracles and blessings that quite literally take our breath away.
Keep doing what you are doing, good and faithful (and sarcastic) servant. :)
I am so glad they are both doing so well! We are still praying here!
I will have to second the Signing TIme Dvds and line of products. Our daughter is neurotypical/full term, but we did sign anyway. IT has been phenomenal!!! She is going to be two in 2 weeks, adn is already speaking on a nearly 3 yr level. She also adores the dvds!
Looking forward to more good news,
Hi there Nate, a fellow CFer passed along your blog to me on MySpace a few weeks ago and I am so thrilled to see Gwyneth and Tricia progressing! I have been waiting for lungs for over 600 days now and one website I thought I might pass along to you and Tricia is http://groups.msn.com/heartlungtransplantsupportgroup
I've found the message boards and both pre and post tx people there extremely helpful while we await that "call!"
Best to you! Sara in AZ
Thank you. I don't know what else to say. You have blessed me and taught me about life and brought me closer to my family and to God.
We've been blown away by your updates today! Every time we checked in there was more good news and answered prayers. :) We are praising God for today's victories!
The video and song were just beautiful! Gwyneth is obviously already the apple of her Daddy's eye. :) Enjoy each precious moment, because she will grow up so fast!
We will continue to pray for peace, strength, rest and patience for Tricia. It's hard for us Moms to imagine being in her position, but I know God will give her the grace to endure the wait. His plan is always perfect, and we know Tricia would be the first to attest to that! In the meantime, she is so blessed to have a husband who will lovingly and humbly stand in the gap.
Thanks for the updates. We look forward to "checking on" your family! The kids said the sweetest prayers for your family tonight. It was incredible to hear our 11 year old praying for Tricia's transplant and even the donor family. God continues to move in a mighty way through your story!
Love and hugs,
The Edwards family
You are on such an amazing journey! Thank you so much for sharing your faith and your family. You and Tricia are a wonderful testimony for Christ.
Nate, could I ask you to pass along a prayer request? This is the site for a little girl in Winston, NC, she is 3 months, and is having frequent seizures, and they cannot get them under control. She has been in the hospital for 3 months now, and they still cannot figure out how to get them stopped. www.caringbridge.org/visit/paxton
Thank you for sharing your walk with us. Still Praying,
Thank you for posting. It's an encouragement to read your posts. Know I am praying fervently for your girls and I will not stop. God is blessing your sweet family! It's a joy to see and read about it!
I think you are one of the few dads out there that can give God praise for the fact that their baby is "pooping like a champ." Remember that in a few years.
I echo those who have already recommended Signing Times. My granddaughter (who will be 3 soon) has grown up with those videos and much of her communication came first with the signs that she learn - long before she was able to get the words out. It has made a tremendous difference in being able to communicate! Signing Times is available both on DVD as well as TV in many areas. You can learn more about them on their website: www.signingtime.com
Poor Tricia. I know how hard it is to be told she can't see Gwyneth. I'm praying for her strength emotionally as well as physically. Having a baby in the nicu is hard enough but when you yourself are sick and unable to visit said baby it makes things so much worse!
I'm so glad you have started Kangaroo Care! It is good for both baby AND parents!
Continued prayers for your family and God Bless you guys
I continue to check in with your blog daily. My continued thoughts and prayers are with you all. And, for the record, Gwenyth is lovely!
a PS to my previous comment.. it may be encouraging to check the About section in Signing Times for some background into the Story behind this family and the reason the videos began - their first daughter is deaf and their second was born eight weeks premature with spina bifida and cerebral palsy.
I just love this picture of you with your daughter. What a beautiful moment. It is written all over your face how proud you are to be her Daddy. And you 2 look so content to be together. Priceless!
hi nathan i updated my blog linking to this site just letting you know
As usual, thank you for the updates. I am glad to hear that Gwyneth is getting the eating and pooping thing down.
Hoping for more good news tomorrow morning!
Shabbat Shalom (A Sabbath of Peace),
Good morning Nate. Great stuff. Thanks for the great updates. It helps to have a better understanding of your prayer needs. I intrepret all the Sunday services at Liberty and used sign with all my grandchildren. It is pretty amazing how much they can communicate before they can talk with their voices. Let me know if I can in anywat assist you.Blessings ~denise
Be encouraged and keep on keeping on, all 3 of you. God is doing such an awesome miracle in your lives. It is a joy to see. I will pray extra for Trisha. Just let her know that this too is a season and JOY comes in the morning. Be blessed and know that we care.
Thanks for sharing. I remember the first time that I kangarooed our premie.
But, since this is your story, I just wanted to let you know that we are still following your story and continue to lift you and the family up during prayer time.
Miracles and answered Prayers thats what's going on here,
It is wonderful Gwyneth Rose is pooping away, keep it coming baby Gwyneth.... =) =) =) =)
I have been saying the Rosary for you Tricia, Gwyneth & Nathan
though I know it is Doctors orders & they are trying to keep Mommy & Daughter healthly and safe from anything that will set them back a few steps....I pray that the only steps Tricia & Gwyneth Rose take are foward ....
My heart goes, out to you Trica for many reason's right now I am
speaking about "the no contact rule" It has to be one of the hardest "rule" to bear....
God is SO on your side,
Prayers & Miracles being answered left & right....
the journey you both are going through & sharing so freely with us, is a life lesson for the ten's of thousands of new internet family
Thank you for being such a influence and inspriation for me
& my family
Showering You & Yours Lovingly MANY Prayers
Long Island New York
What I like about your blog is that it's not only heartwarming, but educational, too! After reading several comments about the Signing Time DVD's, I think I might check our library to see if they have them. I have a 2.5 year old and a 1 year old (today-Happy Birthday Jib), and while they both are at least AT the level for "normal" communication, I think sign language is something ANY family would benefit from learning!
Praying harder still for a transplant, I didn't realize that Tricia wouldn't be able to hold Gywneth until (possibly) after surgery - that's gotta be SO hard for all three of you!
Thanks for the update - it's a good thing for breast milk banks! (I'm only guessing that's where Gwyneth's milk supply comes from?!?)
See you (in person) soon!!!
Thanks for the update. Will keep Tricia in my prayers for strength, weight gain, and contentment in resting in her room while she has to wait to hold Gwyneth. Praying that the transplant is quick and she does wonderfully! Praying for Gwyneth's weight gain and health. Praying for Nate's peace of mind and God's comfort!
I'm speechless, I am at a loss for words...
Let me share with you a 20 paragraph poem I wrote for you, it really expresses what I feel...
Just kidding. I don't write poems or anything much over 4 paragraphs. Can't read more than two paragraphs at a time so your blog is helping me with my reading skills.
Praying that Tricia can hold baby Rose soon!
Gwenyth's Great Uncle Andy
I love love love the two photos of you as a "daddy." One holding your precious 8 week old pug and the other holding your precious 3 week old daughter who is much smaller than your previous 8 week old pug.
I am in awe of God's miracle.
Why God does a lot of things is beyond all of us. In your case I think it would be safe to say it's because He loves you, and He knows you love Him. (It also might have something to do with your blogging skills. Look how many people you have touched with this story. He's gotta be loving it!). :)
Still Praying, have a great day!
Great and A session Nathan! I am still praying that Tricia will get to hold Gwyneth soon. I love how they are doing so much better, and will keep up the prayers for their improvement.
I'm speechless and having nothing left to say.....LOL, just joking of course!.
I still follow your blog everyday, usually a few times a day I check in on you guys. I continue to share your story with friends and family and have placed a link on my blog. You still continue to bless me everyday with your Godly words and I have grown to love your family. Thank you for sharing your daughter and wife with us.
Love in Christ,
Melody in Florida!
Wow! How amazing. I've waited to post just for the sake of not knowing what to say but Praise God. I think I first found out about Tricia when my friend Emily Awbrey from Delaware, OH sent me a prayer request. I soon realized that Tricia and I have a few things in common we both have the same name, both graduated from Liberty and both had a baby in our bellys due around the same time. My due date is May 5th. Anyway, all that to say as I sit here with 3 more months to go in my pregnancy and watch your precious Gwyneth on that video just makes me long to see my little one. What a precious video of you and Gwyneth, a moment I'm sure you will never forget. With my first daughter my husband was the only one to see her and hold her for her first 4 hours. Which seemed eternity to me but now, 3 years later I wouldn't have had it anyother way. Knowing that she received that special time with her Daddy. I'll be praying for your family and that the transplant comes soon so that Tricia can hold her precious gift.
Trisha Philbrook, Delaware, OH
Continuing to pray for the girls and their proud Daddy/husband. Hugs from Texas
Another wonderful post! I really am glad that Tricia and Gwyneth are doing better each day! I continue to pray for you all. :-)
Terrific decision regarding using sign language and if you have any questions, need some feedback, help or else, feel free to ask me as ASL is my main mode of communication. :-)
All the best,
THanks for the updates and Q and A! Praying for Tricia, that God will give her the Peace that Passes all understanding during this time. It must be pure toture not to be able to touch her little one...
I use baby sign in my daycare and it's amazing how fast they pick it up. The ones that catch on well to the sign and use it at home as well have become great talkers at an early age.
Continuing to pray and rejoice in the Good Works of the Lord!
I check several times a day for updates as your faith is amazing and reading waht you write is very spirtual.
The video was AWESOME. The pics of you holding her are priceless. I pray that Tricia gets to have her time real soon.
That baby is just amamzing. I love the part on the video with her eyes OPEN. SHe is just too beautiful.
Your story has affected me in a good way and it makes you stop and evaluate your own life and what things need to be changed and I have done that since finding your blog. THANK YOU!!!!!!!!!!!
I like how you never lose hope and you never lose your faith.
I lost my daughter to a heart defect at 13 months and that changed me forever and brought me closer in my faith.
What Lorri said.
Just glad she said it first.
Since we're doing questions and answers on this thread, I have another question. You have mentioned that Tricia has been on a laptop checking some of the posts. Is she strong enough to be journaling her thoughts at this time? I check her blog often to see if she has updated at all. It would be wonderful to read some of this journey from her perspective as well. However, I realize that getting stronger and healthier is her first priority right now. I am hoping that she is doing some private journaling for Gwyneth at this time - even if it needs to be dictated through Daddy.
We are all giving you (Nate) so much well deserved love and praise throughout this journey. I don't want Tricia to feel she is any less loved and appreciated. She is my HERO!!
Just wanted to offer encouragement as you continue to gently remind all of your fans that we need to back off once in a while. We're expecting our first born any day now and grapple constantly between appreciating everyone's interest, but also protecting our right to privacy. (Obviously on a much smaller level than you). You continue to accomplish this with grace and maturity. Just thought you should know my husband and I are all kinds of impressed. :-)
You look so much like a proud DAD!!
Thanks for the updates even though at times it must be hard to share the details to strangers.
By the way I hope you take a break to watch The Superbowl.Go Patriots!!
Nate & Tricia, Thank you so much for letting us in on some very intimate moments. I feel so blessed to see God working in so many ways! Thank you for blogging, it really means a lot to me.
I find myself reading your blog several times per day. The Lord is using your circumstance in many more lives than you will ever know here on this earth. As a nurse who has cared for CF kids/adults and premies and now a Nurse Practitioner/midwife, your life is so inspiring to me. I find myself praying for your family often. God is so awesome. He is a God of healing and miracles today.
Thank you for sharing your life with the world. I think of that Ray Boltz song "Thank You" when I think of you because I do believe there will be a great reward for sharing your story of how faithful God is with the world.
I pray for Gwyneth to be off the vent and just a "premie to grow" and I pray for Tricia to be healed and restored to health, either through transplant or divine healing, however the Lord chooses. I can't wait to see pictures of Tricia holding your beautiful baby.
Kelly from Wisconsin
I have been following along regularly for a few weeks now but have been so speechless... literally!
I have passed your amazing story on too many and continue to do so. I am currently expecting my fourth miracle child and am in my 27th week, so seeing pics of Gwen really puts things into perspective for me. Your story has touched me on so many levels and has really pushed me to take inventory of the blessings that I have in my life.
So thank you!
I am continuing to pray for you and your two beautiful ladies!
Simply amazing... there is no other way to put it! I have had two children myself, after struggling with years of infertility and I thought the minute I held them was such a miraculous time... you took me back to that moment. Thank you!!! God is good!!!
Yay, Gwyneth!!! Keep gaining weight, baby girl!
Thanks for the update. Sometimes I didn't know I had a question, until you answer it. :)
i am a pastor's wife in tx. my niece has cf and had the double lung transplant a couple years ago and is doing well! dear friends of ours went through having their firstborn isabelle at 26 weeks and we watched the Lord take care of that baby--she is an active 2 year old now. Needless to say, your story touches my heart and you are in my prayers! thank you for your simple faith in Christ, expressed beautifully in your blog.
Yay for growing! So exciting! She'll be fat before you know it!
Maybe I missed it... but when was her orignal due date?
And also- if she is pooping so well, does she have to be under billi-lights at all? Ours was under them so much (she had some poop issues as well)
While we hold a very special place in our lives for preemies, we'll be praying for Tricia to be able to see her littlest more soon.
I check in on you guys daily and continue to lift you all up in prayer to the Lord. You have an amazing family. Thank you for sharing so much of your journey with total strangers. It is full of hope, and that shows through your honesty. Praying for continued rest, increased strength, and overall health of all three of you. God Bless You!
wow. you have sooo much going on.
I hope they can arrange a meeting for Tricia to hold Gwenyth before her transplant. That seems so cruel for a mother to have to go through. I understand the why of it but I think that primal need of a mother and baby needing to connect is very important too. this isn't meant as advice either, just an observation.
I hope Tricia begins to get stronger as fast as she can!
btw signing times is the best signing series out there!
The pictures of you and Gywneth were great but the video was simply amazing. I'm trying not to tear up even now as I think about it.
God is showing us how awsome he is!
Thank you for sharing your story with the world. It needs it.
Elizabeth,Tina and I continue to pray for you and your Ladies.
Mike @ NHC
Nathan, I read your blog up to 3 times a day...sometimes I X out and am in tears. Your testimony to the Lord is touching so many lives right now. Can you imagine going through this with Him in your life? You are a great witness to so many. I pray for Tricia and Gwenyth daily...may all 3 of you feel the warmth of prayers wrapped around your anxiety, restlessness, or whatever feelings you need help with. Most of all I pray for strength...for all 3 of you, and all in different ways. Keep pushin' on.
Okay Nate, I am not left speechless and I have plenty to say:)
"Why God is blessing me in this way is beyond my comprehension."
One of many reasons I see:
Your story that you are living out was ordained by Him before you and Tricia were ever born. If He would have made this known to you before now, you might have had a chance to tense up and freak out and try to change things. He has you trusting Him with what the world would say is impossible odds. You share it here as it happens, the real story, and thousands are reading it 24/7.
And God gets all the glory as He shows some of His best work, drawing eyes and hearts to Him. This is His reality tv show, putting the rest to total shame. No one knows how this will all work out, but the One directing it sure keeps us coming back and you keep pointing us to Him.
Do you ever remember a time you cried out "Use me God"? Because He sure is doing just that.
Praying for your amazing girls and for each and every need they have to be met by Him, and praying for you too Nate. This is not an easy road you 3 are traveling, but the One who walks it with you and carries you sure is BIG!!
Laurie in Ca.
To add to the size vs. dog idea... Our 24 weeker (1 lb 2 oz) was about the same size as our great dane pups the day they were born. Our dane pups were between 15 oz and 1 lb 6 oz. I found that just astounding. And the pups were over 2 lb by two weeks old and our son was 2 pounds at several months old. And I'm so excited that Gwyneth is so close to CPAP so soon....unbelievable.
And tell Tricia, we never got kangaroo care at all (not sure why) and I was the last one to hold our son as well (of the people that were able to visit and did so). But she is still Gwyneth's mother and no one can change that. There is something special in being the mother that carried our babies...even for such a short time. I know. It doesn't help much, but there it is none the less.
Thank you for reminding us that life is so very special! God Bless your beautiful family...sending prayers up for you all!
Sioux Falls, SD
Amazing and beautiful... It took me back to holding my daughter for the first time at her 26th gestational week. Get that kangaroo time in and keep smiling and praying. Amazing.
Nate, Tricia, and Gwyneth,
I am a 19 year old college student and was invited to the group on Facebook a few weeks ago. I just have to say that everything you post on your blog has encouraged me so much! It's so amazing to see how God works. Your video of you holding Gwyneth for the first time made me cry! I have been praying for you and your family and will continue to pray.
Also, Gwyneth is gorgeous!!
I have never commented on your beautiful blog before, I don't know why I havent... I see your girls are doing great!
But where is the update on you. Your strength amazes me.
So here's a question...you said that Tricia probably won't be able to hold Gwyneth until after her transplant, right? So if I'm reading that correctly, that means that we now, more than before, begin to pray that Tricia will "get" new lungs very quickly...I know she wants to hold her baby. Please let me know if I've got all this right.
Love all three of you and have never actually met!
[snip] I have promised Tricia that nobody else but me will have this opportunity until she is able to join me... [snip]
I think this is awesome. I had a scheduled c-section and knew that I wouldn't be able to have that "traditional" holding of the baby right when they are born and that he would be whisked away. I made my hubby promise that nobody else would hold him until I was able to. Some kind of mother thing I guess. He had a hard time understanding it ---- so it's a blessing to Tricia that you do "get" it! I think for me, I was afraid he wouldn't know *I* was his momma - but in hindsight that's pretty silly --- but it still doesn't change the fact that while I love my mom, I'd be sad if she held my baby before me. I guess there is no logic or easy explanations for mommy emotions! So gald that things are still going well. It's great to hear that Gwenyth is starting to get breast milk.
Thank you for sharing your story. I check each day to see beautiful pics of your family. Please know we (my daughters 8 and 5) are praying in Washington. My kids constantly want to see pics of Gwyneth with your ring around her wrist. We watch that video alot. take care
I will pray for Tricia to have a good, healthy appetite to put on some needed pounds. I know what a struggle this is. My 2 year old cf'er has a very hard time gaining, even with her tube feedings at night.
I also wanted to add a comment about the cf screening. A previous commenter had mentioned that a sweat test is not as accurate in determining the presence of two mutations as a blood test. It has been my understanding that she is correct. The sweat test used to be the standard (and is still usually the first test) simply becasue it was the only test for so long.
There have been may instances of a blood screening that tests for only the top 25 o r 75 mutations missing the gene in the husband or newborn of a cf mom.
I am confident that your team at Duke (neonatal and Cf care combined) are doing evverything that needs to be done given the genetic nature (mutations) of Tricia's cf.
I post this not to question your knowledge or actions, but to inform other readers who are learning about cf.
I know I've said it before in previous posts, but I can not thank you enough for bringing awarness of cf to so many people.
Tricia and Gryneth are never far from my heart. As the cf mom at the top of this post said, your story gives me great hope.
I continue to pray.
Tami in Wisconsin
izemmom on CF.com
great post, hopefully Gweneth will get to come home soon and Tricia will recover quickly from her surgery :)
What a great post...interesting (and funny...I enjoy your wit) to read as always. Our family is praying for you!
Nate - You, Tricia and Gwyneth are in our thoughts and prayers. What a beautiful family you have :) God is amazing and is definitely doing amazing things in your lives. Just know you are thought of and prayed for often. God bless.
I'll definitly be adding you and your family to my pryaer list..
Just think. You are getting to see the miracle of life as it changes day to day. This is what would be going on inside Tricia.....God is allowing you to watch from the outside in!!!
My son who just turned 16 on Jan. 31st was born weighing 1 lb. 6 oz. He was 12-1/2 in. long. He was 3 weeks old when I held him for the first time..... We did not have the Kangaroo method it came out 1 yr. later!!!! Of course, Blake was too early for it!!!! LOL :)
Blake is the Miracle of Prayers & Love!!! You can read habout his journey at........ http://www3.caringbridge.org/sc/blakester
The Greatest Adventure of MY Lifetime!!!!!
Dude, that is so awesome!!
Hi Nathan and tricia,
Man I loved your video with you holding gwyneth. I watched it three times. I looked for it today and couldn't find it.
I think it's great that your mom recounted your birth for you. I wish you would reconsider allowing the baby's grandparents to hold her closely too. She needs the cuddling and you can't be there all the time.
She looked so alert in that video. I hope she starts to gain weight and is healthy and strong. Tricia is lucky to be from such a supportive family. When I go to Nag's Head next July, I am going to stop by your church. We go to the Catholic church there when we are on vacation but I have seen your church.
I am praying like a fool for you all.
Cheers, Cheryl from Fairfax
Afternoon Nat, and Girls!
just want to say Hi
and hang in there!
Nate! Signing with your baby is an awesome thing! I highly recommend it! Please check out www.signingtime.com and read about Rachel Coleman (who makes the videos) and her amazing daughters Leah and Lucy! They have quite an inspiring story too.
Love to read about you and your family! God bless!
I am speechless! Now for something else to make you smile and think... you may not like to think you're comparing Gwyneth to your dog but... you're comparing Gwyneth to your dog! Don't worry though. I'm a mom with children and a previous dog owner and I do the same thing. You'll weirdly be amazed how you'll even compare other things about your dog to your sweet precious girl! Get over the guilt! You're not the only one! Meka has a sibling!
Have a great weekend!
I do have you linked on my blog, on a list of prayer requests, but I will remove it til' you say it's ok! Sorry!
A daddy & his daughter Simply Beautiful!
So glad Gwyneth is eating! Hopefully, TPN will be gone soon! When she makes two pounds we're going to have a party at my house!
Maybe I've missed something...why the need for sign language..?
This message is for Tricia... Stay strong girl.. I know it is hard for you not to be able to see or hold your beautiful daughter, but try to be patient. You will be able to hold her. Get well, play games and do lots of other things. She knows and understands.
Do you guys have a tape recorder? Is Tricia able to speak long enough for you to tape her voice and play it for Gwyneth. That way she can hear her mommy's voice? Just an idea.
I am so happy to hear that Gwyn has gained weight. That is such wonderful news!!!
Still praying for the both of you.
God Bless you and your family. I am continuing to send prayers your way.
Hey.. I'm a long-time friend of Scott & Julie and their gals.. (ask Scott about his bikini and Julie about the meat man at the pool for a good laugh) You guys are constantly in my thoughts and prayers--your ladies and you are such blessings and wonderful testimonies, no pedestals needed:) God is doing such wonderful things for and through you guys.. It's wonderful seeing people ackowledge and glorify Him through all of it when I can't even say I wouldn't be thinking He was a jerk through it.. I believe he does (and did, and always will) pick a special breed of person to carry out things you guys are living. You are all so blessed, and you constantly pay that blessing forward to so many of us.. Your gals, with every new breath they take. I know He's always got the strength, peace and comfort you need when you're willing to take it from Him:)
Thank you guys, and congratulations on your beautiful daughter and having one heck of a woman as a wife! Maybe the Lawrensons and Hammocks can have a powow someday:)
Megan Garland Hammock
I feel for Tricia not being able to hold Gwyneth. That is such a sweet video of you holding her. I felt so comforted with all the soft sounds of the NICU and my baby on my chest. And it's so warm in there! I'm so glad you are getting to hold your little girl and it sounds like she loves it. I put a post about one of yours: http://todayslesson-theartofbalance.blogspot.com/2008/01/read-this-post-httpcfhusband.html
Thanks for sharing so much with us strangers!
I just wanted to say, WOW, what an amazing journey the Lord has brought you folks through. I am praying for you, I do plan on linking you to my blog if I can figure it out that is.!
I'm just wondering, purely out of naive curiosity, why Tricia is not allowed to see Gwyneth? Is is all to do with 'cross' infection issues? I really hope that can change very soon.
I have been following your blog for about 4 weeks now and it is great to see your baby doing so well. I'd like to pass my best wishes to Tricia too. My little boy also asks to look at the baby pics. He in enchanted by Gywneth's size. I have to admit, that I am too.
Best wishes to you all. I'm still keeping everything crossed for you.
I came across your blog via your Uncle Andy (he was one of my brother Andrew's closest high school friends). I have been praying for you and your precious girls ever since. I posted a link to your blog on my blog and people are praying..as you have attested to and are aware.
Thank you for your updates - I am blessed by your faith, courage and strength. The video of you and Gwyneth made me cry...great song choice with it too!
Praying for you all!
Caroline Bell Grossman
Why sign language? Little ones are able to communicate long before they can actually talk...so teaching them simple sign is a way to help them be able to communicate with you before they are very verbal...for us it helped cut down on the frustration level of our son, he could tell us simple things even though he could not talk well yet...That is why we taught our simple signs when they were young...Others may have different reasons...
Thank you for the updates! We are still praying for your family.
Nate and Tricia- I am done crying (I hope)!!! Your posts today have been incredible. Looking forward tp the post when Tricia finally gets to hold Gwyneth. May you all have a blessed weekend.
Love, The Hagers in Michigan
I too, wanted to thank you from the bottom of my heart for sharing your blog with us. Your family will be in our prayers!
Our son, Danny was adopted from Bulgaria and weighed 2lbs 1 oz (28 weeks) - It is amazing to look at your beautiful Gwenyth (even though I realize she is smaller than he was) and imagine what our son looked like when he was born (we have no pictures). He is now an active, intellegent 5 year old who won three awards at his kindergarten recognition party this past Friday. He was also tested for CF when he was 3 due to him having severe lung infections/asthma - which was negative. He is a trooper - just like your two girls!
Your two girls are very lucky to have you and your sweet Gwyneth is lucky to have such a brave Mommy and Daddy!!! Praying for many miracles to come your way!!!
Jay, Jan, Danny, & Emilee
Hey Nathan, I was all excited to see the picture with you and Meko and your new haircut!!! but then I read that it was a picture of you and her when she was a pup. Dang! Got me all excited to see that you got out for a bit and cut your hair short. LOL!!! Just joshin' ya ;)
I've been keeping up with your updates every day. Thank you SO much for sharing!
I also just wanted to let you know that last week our family of 5 started going to a church. I find that I can't wait to go and wish it was more than 1x/wk. Add on another 50 or so people sending prayers your way now :)
Don't know ya, but love ya!
Monette, Tim, Garrison(11), Logan & Megan (4)
in North Texas!
I am amazed at how well you seem to be understanding all the progress Gwyneth is going through. Not meaning anything except you are doing a good job at it. I think you are also such a considerate daddy, and husband, like telling her no one but you will hold her til her mama can. I cannot imagine what she is going through not being able to hold, or see her baby.Do they have a window Tricia could look through to see her baby??
Talk to you later...nurse Bev
God is "amazing"! We are praying for you, Gwyneth and Tricia. Both of your girls are truly blessed to have you in there lives. They are beautiful!!
Still praying for miracles your way. Matt, Jessica,
Alexis & McKenzie Garza
Our family has been praying for you the last 3 weeks and keeping up with your site. First, let me tell you that it has been wonderful reading your blog and seeing God get the Glory. So many times when we are going through the storm it is so easy to get caught up with bitterness, anger and not see God in it at all. Our family has 2 miracles. In 96 we gave birth to our first son at 24 weeks. He stayed in the NICU for 89days. He doesn't have any problems due to being early. In 2003 God allowed us to have another child. He has a very rare form of MD. He is the only case they know of in NC. At six monthts old the docotrs told us he wouldn't live to see his first bday. He is trached and vented 24/7 and lives at home with us. He is truly a miracle and greatest blessing I could every received. If the Lord continues to bless our family Ethan will be 5 in March. Those NICU days are long with lots of ups and downs. Don't get discouraged. Andrew loved the vent. He didn't like Cpap at all. Finally at 5 weeks he took hold and stayed alittle while on cpap and then to nasal canal. Sorry so long. Thanks for sharing your heart and family with us. Our church family is praying for you. We learned about your family from Amy at your church. She emailed some friends and they emailed our pray team. God Bless you all!
most of us are blessed beyond comprehension... we just don't choose to see it.
Thanks for the updates...you rock!
still praying in sc
That's so great that you're already thinking about signing w/ her! My daughter has Down syndrome and b/c we knew she would be delayed in her speech, we started signing at 3 months (milk when she nursed). Anyways, I have to share that she just turned 2 and has over 70 signs! Less than 5 verbal words, but signs count as words, so she's on track w/ her age group! The key is consistency! I'm sure you guys will be great. May I recommend Chelsea's favorite signing videos? www.signingtime.com She absolutely goes crazy and when the theme song comes on, she starts signing, "baby signing times" it's precious!
Carey and Chelsea in KS, www.cbranam.blogspot.com
It was a pleasure to meet you the other night at Target. I felt weird going up to talk to you, but wanted you to know that we are praying for all three of you.
I just got home from a very very long day of working and helping my brother move and a friend of mine told me you had posted a video. My parents are here visiting us so my mom and I sat down to watch the video of you holding Gwyneth. Thank you so so very much for sharing that with all of us!!!!!!!!!!!!! I am crying huge teardrops of joy all over my mom's brand new laptop. What a miracle!!!! I pray Tricia gets to hold her soon.
to Kristen who heard the sweat test was unrealiable--two of our children have CF and we were told it was very reliable, because it either shows you have it or you don't. It doesn't measure any iffy degrees of illness as some tests do. There's a number that is looked at --below it and you're okay, above it and you have CF.
There's a whole slew of people jumping up and down rejoicing with you over here at Meredith College. We are so glad to hear that Gwyneth is pooping like a champ. The Lord is so good! We're still praying!
I have been following your blog for some time now. I have not signed in mostly because about the time I try my little boy needs me. I found your blog through the Cassetty Family's blog. Your family has been on my heart since then and we pray for you as so many others. My little boy has a web site...in my next posting I am going to share your blog (I have been trying to add more people but I will have to type it in a post). I will have to email you some day when Tricia would feel like answering questions. You see my little boy has a genetic syndrome called Aperts syndrome and a year and a half ago had to have a trach placed. He is on a home vent at night due to the fact he will stop breathing. I would love to know from Tricia details on how things feel.....it is so hard with a little boy who can't communicate it. He is going into his biggest surgery ever on March 4th and I would love to hear how it "feels" from someone who knows. I hope this doesn't seem out of line but how it would help my heart when caring for my little fellow. His web page is www.caringbridge.org/ky/isaiah you can find out more about him there. He is our little miracle as Gwyneth is the two of yours.
Sorry this has gotten long!!! Thanks for sharing your story and your heart with us all.
I just happened by your blog. I was not sure why God was leading me here, but now I know he wants me to be a prayer warrior for you. I just wanted to let you know that God is still in the miracle performing business and I am praying for miracles upon you.
To add to my last comment to Kristen--no the sweat test does not show what cf gene mutations you have. That takes specific genetic testing.
Thank you for your perseverance in posting. Your faith has returned mine.
The picture of you holding your precious baby is so beautiful! There is just nothing like that skin on skin contact with your child. My heart hurts for Tricia that she can't do it too, I can't imagine how hard that must be!
I'll be praying that she gets on that list ASAP!
My kids absolutely LOVED the comparison of your puppy to your baby. It really puts it all in to perspective. Best of luck as always.
I have been reading your blog since baby Gwyneth was born, but have yet to post a comment. My youngest daughter (Morgan, 11) and I have been following Gwyneth's and Tricia's progress and we have been praying for all of you and will continue to do so.
The video of you holding Gwyneth had me in tears - I can only imagine how amazing it was for you.
I was just reading over this blog and realized how thoughtless of me it was to write about your family and story without your expressed permission. I am asking that now, post-written, I can have your permission to continue showing the article on associatedcontent.com If you do not give consent, I completely understand and would be happy to delete the written article until such time. Please let me know via Brenda@Lnkweb.com Thank you and again, my thoughts are with you. If you'd like to approve the article you can go to http://www.associatedcontent.com/brendaboitson and click on the miracle family link. Thank you.
Yes, please keep us updated on the Paypal donation account. I'd like to be sure and donate.
Thank you and please know that your family is in my prayers.
You don't know me, but I am a friend of Carolyn Bennett. I have been reading your posts for a few months now. I checked in today and realized you haven't posted anything in a while. Please let me know how things are going. I have requested prayer at my church and my mom's church. You have been an inspiration to me as I read how well you have been dealing with all these life changes. I have been praying for you, Gwyenth and Tricia. Please let me know how they are. God bless you and you are in many prayers.
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