The TX coordinator just came by again. Tricia signed the papers. She told us it will definitely be by the weekend, maybe tomorrow. I'll let you know.
Q&A
> As always, I say this with love... I've been asked several transplant related questions that I've already answered several times...I want to encourage you, if you're new to the blog to use the "Labels" over there on the right of your screen to do a little research. Also, Google is a great tool. I would love to answer every question, but I just don't have the time or energy, so I hope you understand. But, just to be nice...
> There is no way to know how long Tricia will be on the list...the average double lung TX wait here at Duke is a few months. The odds of Tricia being alive this time next year without a transplant are very, very small, and her window of opportunity is even smaller, so we don't have much time. It could be the minute after she gets listed, or it could never happen.
> The vent that Tricia is on is not portable. Like I said, without a new set of lungs, her CF will kill her in the near future.
> Gwyneth "sleeps" probably 22 hours a day right now (that's just my guess from observing). The only times she seems to be truly awake is when the nurses or other staff are messing with her...every now and then she'll be awake on her own for a few minutes. She does look around, but I've been told that she has little control over her eye motion, and that she probably doesn't register with anything she's seeing yet. I do think she can recognize the sound of mine and Tricia's voices (although Tricia can't speak when she's on the portable vent in the nursery).
> There's another great question that was asked that I'm going to devote an entire post to later.
Thanks!
Nate
92 comments:
What an answer to prayer! I hope that she gets put on the list soon, and that the wait will be shorter than anticipated. With God, all things are possible!
YES! We will continue praying that Tricia receives some new lungs so she can enjoy her baby girl!
yay!!!!!!! :)
Keep us posted... Still praying.
Rebecca
Nate and Tricia, my little brother has cf and had a transplant 6 months ago and is doing great, i try to imagine what you must be going through but know im not even anywhere close, im not religeous and dont go to church but have found myself praying for you all that soon, very soon Tricia will get her transplant, Gwyneth will get stronger every day and you Nate will have your fabulous family back at home with you where they belong and all deserve to be!!
nate,
i can't even remember when or how i tripped across your blog, but i did, and i've been a faithful "stalker" and prayer-warrior since i did. cf has touched our lives through a couple of our employees and we, as a company, have been huge supporters and fundraisers for cf over the past 25 years. not that i'm patting ourselves on our backs, just to let you know that we have a heart for tricia and her situation.
praying, rejoicing and anticipating the day you can all go home as a family.
blessings to you and your sweet faithfulness to share and be vulnerable.
nate,
i can't even remember when or how i tripped across your blog, but i did, and i've been a faithful "stalker" and prayer-warrior since i did. cf has touched our lives through a couple of our employees and we, as a company, have been huge supporters and fundraisers for cf over the past 25 years. not that i'm patting ourselves on our backs, just to let you know that we have a heart for tricia and her situation.
praying, rejoicing and anticipating the day you can all go home as a family.
blessings to you and your sweet faithfulness to share and be vulnerable.
Yay!!!!! We'll be praying now that she gets those lungs asap!
Tricia, you have such a kind and loving husband!
praying for the donor family too!
Tricia... I hope the new lungs are yours soon. It will be great. We're praying for you here every night. I am so enjoying the web site too. Your little girl is so beautiful! Love, Joanna
I check your blog often for updates and keep on praying. I am reminded by this post how generous you have been with the information you've given all of us. Praying for your girls.
Great news about the Transplant List! On pins and needles (and prayer bones!) here in MI!
Speaking of pins and needles....Now it seems you are not only keeping us in suspense about Part 10( you didn't forget Part 10...right?)...but also now about the mystery question and future blog! As if we didn't have enough other reasons to keep checking back a gazillion times/day! BTW, I loved your Mom's comment under the Song Contest post. She's my kind of Mom!! :)
What fantastic news!! Prayers continue of course ;)
Nate, have you ever thought of bringing a recording of Tricia speaking to Gwyneth while Tricia is actually down there with her? Something where Tricia could hit a button and "talk" to her so that the voice and Mommy's presence happen at the same time?
(I wish I could lend Tricia my voice for awhile! Today I seem to be using it with my 2 1/2 year old DD mostly to say, "Noooo! You know not to take apart Mommy's purse!" Tricia, you have this to look forward to and laugh about!))
go tricia! you will get your new lungs you deserve..have a great life...Gwyneth will be ok and be able to come home and the 3 of ya'll be become 1 family.
I'm so happy to read this (I've been checking your blog over and over all day!).
We're still praying.
I am so happy that Tricia will be on the transplant list! I pray that the transplant will happen sooner than later, and as another poster said, I also will pray for the donor's family.
And to add to another poster ... I too wish I could lend Tricia my voice ... "Little Princess, come give me kisses!!!!"
Wow- big news!
We are definitely praying for Tricia to get on the list quickly, to find a donor match even quicker, and for you to all go home together as a sweet family. What a special day that will be!
Also praying for the donor's family...it is sad to think that one family's joy and answer to prayer is also a sign of hurt and grief for another family. I for one, am so thankful people are willing to be organ donors and use this human body to its absolute full potential, by extending life for someone else after themselves. What special people! I hope after reading your story, more people consider becoming organ donor's themselves. I know I have definitely decided to.
Thank you for continuing to share and be open with your Internet family. We are all praying for you!
This might be a dumb question, but I was curious.. if for some reason (and I hope it's not the case!), new lungs do not become available to Tricia, can't she just live on the vent? or is there some specific timeline for being on the vent? I Know you mentioned before that without a set of new lungs, Tricia would not likely survive until next year..and I was wondering if she could just remain on the vent and survive okay in the event new lungs are not available to her?
~Beatrice
I'm glad to hear the good news! I will continue to keep all of you in my prayers, especially that Tricia gets her transplant very quickly and does great with it! You both are such an inspiration!
Greetings, from Lynchburg,VA and prayers, so many prayers, everyday, 2 or 3 times at least, for the whole lovely family!
Praying for the precious to grow and have no complications. In a few years she will be such a big help to Mom. Dad will be working hard all day to provide a pony for the munchkin. He will need help shoveling out the stall.
Tricia, I am still praying for a miracle for you, just because I want to, and it's something jaw dropping like new lungs that last for 50 years : )
I see you running a marathon.
God bless-
Beatrice,
The vent works with her lungs. If her lungs can no longer support the vent then the vent does no good.
In case you can't sleep tonight...
total lunar eclipse!!!
http://sunearth.gsfc.nasa.gov/eclipse/LEmono/TLE2008Feb21/TLE2008Feb21.html
Beatrice, I see Rick answered your question .. but also CF doesn't just affect the lungs. It affects other organs as well. Even if the vent made it an option for her to live longer ... other organs might fail with the CF.
(I could be wrong .. and if I am ... please feel free to delete it)
This sounds great! Praying for a quick transplant for Tricia. Praying for continued growth and health for Gwenyth.
Kim
Praying for Trish, Nate, Gwyneth and for the donor, their family and loved ones. Also praying for all of your families who are no doubt on an unimagianable roller coaster ride of emotions!
Praying for Trish, Nate, Gwyneth and for the donor, their family and loved ones. Also praying for all of your families who are no doubt on an unimagianable roller coaster ride of emotions!
I stumbled across your blog today and read through it all...
What a blessing.
Praying for all of you.
Nate,
Thank you for being so forthright with us about Tricia's future. I am now even more aware that I need to be praying for her even more than before.
Banging on the gates of heaven on behalf of your family for a new set of lungs,
Beth
Montgomery, Al
Question- Once Tricia Gets her new lungs how long will she be in the hospital. I only ask because I have been following your friend Alice's Transplant and it seems she was out of the hospital really quick. Is that the norm or maybe just difference of treatment here??
Praying for you and your girls daily.
Great news! I'm praying that once Tricia is listed, she will find a donor soon thereafter. How awesome will it be for her to hold her sweet baby girl?? I'm also praying for the donor and their family!
I am praying for your family. I pray that God will continue to weave His name through your life. What a testimony you have been to others. It is a blessing to see your families willingness to give God the glory and allow His name to shine. What a blessing to have found this site. My daughter is having double cochlear implants on Tues of next week. As I sit in the hospital there, you will be in my prayers, as I know your family is right down the road! Blessings to each of you! May God receive the Glory.
Blessings
Amy (and Mark)
missionaries to Honduras
http://moorefam7.terapad.com
Praying for those lungs, the donor, the donor's family, and you all from Atlanta!
My family and friends are praying that the lung transplant will come soon - like really soon. As in, she'll do her thing and the doctors will be like, check it out, here are your lungs ...the next day. We are all rooting for her!
Here by the way of Chelle.
You are each in my heart and in my prayers. I put a special link up on my blog for Gwyneth today.
God speed.
When our son was born prematurely we were told that he would sleep most of the time until his original due date arrived. The NICU tried to duplicate the womb environment as much as possible while his body tried to play "catch-up". What are you gonna do in a womb except sleep??
YAHOOOOOO!!!!!!
What wonderful news!! Still praying!!!!
I don't quite understand, so will she be getting the transplant as soon as tomorrow or will be put on the list as soon as tomorrow.. ?
I'm soo happy to hear that things are moving along now...
Praying that Tricia gets those lungs quickly. Your family is an inspiration and an awesome witness for the Christian world - thanks for allowing us to pray with you.
I've been following your story for a while and have been praying for all three of you. What an amazing story of God's goodness. I also added a link from my blog to yours.
Rebekah in Michigan
Now it the good news time to pray twice as much, not only for Tricia and Little Rose, but also for donors ( sp? )doctors and all the staff involved, family and be sure Ill be asking/praying with all my heart, again and again thank you so much for your generosity keeping us posted, I can´t wait for the day of Nathan posting a family picture going home together, Lu
woo hoo!!!
Hi Tricia & Nate
I posted your blog address on http://transplantbuddies.org Prayer forum. We have many praying for your family. I have a feeling that Tricia will receive her lungs soon.
I was on a vent and trached after my second transplant. Tricia is an inspiration to all.
I will check back daily and will notify my forum list when Tricia receives her new lungs.
God Bless You all,
Risa
I have been keeping up with your story ever since I stumbled across your blog through a friend of mine and your story truly inspires me. Keep fighting!!!!! I have been reluctant to ask a question since I don't know you, but I am truly curious about the subject and I don't see where you've addressed it previously...what has your experience been with health insurance? I know of people in similar health crises who have really had a hard time with their carriers, and I am wondering if you have been struggling with the same issues. Do you have any advice when it comes to navigating the bureaucracy and maintaining your standard of care?
Your story has inspired me to donate my breastmilk. Thank you
Julie
Go, Tricia GO! You are incredible! Thanks for continuing to keep us up to date and know that so, so many prayers are being said.
My prayers go out to you and your family. My granddaughter spent several months at UNC when she was born with a heart defect. Whenever I see her smiling face, I think of Cobie Callait's song "Bubbly". I think it would be fitting for a birthday tribute to a beautiful girl like Gwyneth.
Romans 15:13
If it is hard for me to truly face how critical Tricia's situation is I imagine it is indescribably harder for her family even with their great faith. As to the vent, it is not great even for healthy lungs to be on a vent indefinitely, there is risk, so that is in addition to the other info posted. Also, being on the list means that your information is circulated to be matched with organs as they become available--but there is no control over what becomes available when. So, being on the list is a huge milestone worth celebrating in a big way but not a guarantee, as Nate has put it so eloquently. Prayers continuing!
Sending lots of prayers up for Tricia and her donor. The sooner the better all around, it sounds like.
Have you noticed yet if Gywneth responds to your voice?
"may the God of hope fill you with all joy and peace as you trust in Him so that you may overlfow with hope by the power of the Holy Spirit"--our prayer for you
I've been checking everyday and praying that Tricia would soon get listed. I am so happy for the both of you.. and for little Gwyneth, who will soon be strong and healthy and have a strong and healthy mom to take care of her! What an answer to prayer. I will continue to pray for all 3 of you throughout this journey!
Not that you couldn't have guessed it, but we are still praying for you! :)
Hugs and Love,
Meredith :)
I've been home the last couple of days and thinking about you guys alot, praying and thanking the Lord for giving me you two as awesome examples of strength, obedience and trust. I could only hope that should I face a trial 1/8th as big as the one you are going through, that I would deal with it as gracefully as you have. I am praying earnestly that the Lord bring Tricia new lungs quickly, that he bring comfort to the family that donates them, that Little Baby Rose grow strong and beautiful just like her moma and that Nathan is abundantly blessed for being a true witness of what a husband is meant to be. Thank you so much for what you have brought to my spiritual life, the converstaions I have had with God because of you Tricia, I will NEVER be able to thank you enough for. Thank you and Bless you.
Just noticed you mentioned that you thought Gwyneth recognized your voices. Did you record Tricia's voice for her to hear? I thought that was a great idea.
Glad to hear that the transplant thing is in motion. Am praying for you guys.
Praying for Tricia to be listed and her transplant to come quickly, also for the donor's family and friends.
Just wanted you to know that because of your openness and honesty I finally found the courage to speak up about my testimony at a home group meeting last night. Thank you Nate.
Much love to you all.
x
Nate & Trisha, as I read the blog today at Nate's frankness about Trisha's condition it hit me what it would be like living not knowing that you'd be alive next year at this time. Then it dawned on me I'm in the same boat but don't think about that often. It makes me want to do my best to enjoy today because I may not have tomorrow. We will continue praying for you all and will actually include ourselves to take advantage of the life we have while we have it! Thanks for the reminder.
I will keep praying that Tricia gets a donor quickly. Also, I just wanted to let you know, from the little medical classes that I've had, and all the books I've read while pregnant both times...Gwyneth should be capable of recognizing your voice...from what I understand it is something like 28 weeks gestation that they start "remembering" familiar voices, which is why they're comforted by hearing mama or dada when they're born!! =)
Mrs.Haggie810 and the rest of our Hagemeister clan (my google i.d. isn't working for some reason! Grrr!)
Just some words of encouragement Nate, my son waited only 4 weeks after he was listed for his new lungs.
Hoping for lungs soon soon soon. You need to get home to celebrate Mother's Day!
Not sure if Tricia got to a window to see the eclipse last night, but I have several pictures from it on my blog and could add more if need be.
I am curious, if you don't mind sharing, which two CF genes Tricia inherited. My daughter is a double DF508.
I also wanted to pass on this web site about a woman who had double lung transplant fifteen years ago. She is in fitness competitions and is doing great. If you have already seen it just disregard.
http://www.dottielessard-oconnor.com/home.html
Praying new lungs come soon and that Gwyneth continues to do well.
KHJ-Boston
Your post today reminded me of all of the stark realities that you and Tricia are facing and how truly miraculous it is going to be when (not if) a donor is found. I appreciate your great attitudes and how you are relying on the Lord for your sustenance and strength. I know that since I've begun reading your blog, I've hugged my children a litte tighter, told my husband that I love him more and tried through it all to include the Lord more in my life and not treat him like my Great Aunt or Uncle that I only see a few times a year. As always I am praying for your strength, your marriage, your health and your family. Have a blessed day!
I just happened to check in on Tricia's site in case she has blogged! Oh what a JOYFUL surprise I got. Oh Tricia...I can see why you FIGHT SO HARD and never give up. Your life looks (in pictures anyway) to be so full of love, family, laughter, friends and Jesus shines so brightly in each picture. I bet you ARE homesick! You are blessed indeed. And now, even in the hardships that go along with illness and a preemie, you have GAINED even more to add to your already very full life. Again, it's been said a thousand billion times...you are the epitomy of living life to the FULLEST everyday! God bless you! (even more than He already has!) I think what makes you so inspirational to me personally is that it would seem you seem to live with NO REGRETS. What a thing to aspire to.
Hey Nathan,
We are, as always, keeping you guys in our prayers and now will add that the PERFECT lungs for Tricia will arrive on God's schedule just as he has provided for you all this far. You have an amazing story and need to get started on that book!
Nathan, has the transplant team been involved or are mentioned the recent article about transplanting the donor's bone marrow as well as the organ to reduce the need for anti-rejection drugs in the long term? It sounds very experimental, but WOW, what a possibility!
Have a great day!
Praying everything is ok...we don't usually go this long without hearing from you......
You made the paper in Canada!
Keeping fighting girls!
http://thelondoner.ca/edits/rooth.htm
we are praying! Sunshine
Getting worried....Usually Nate has posted by now. Praying that everyone there is alright!
J. in OH
I am glad that I am not the only one worried. Where are you guys??? Hoping and praying thay everyone is ok.
The Canadian newspaper article http://thelondoner.ca/edits/rooth.htm is wonderful - so well expresses how many of us strangers feel compelled by this story. I find myself clicking refresh over and over, especially today when we are waiting so long for more news, to which we are not entitled, but which we crave for the blessing our love for this family brings.
OK...you "anonymous" people made me nervous...so I just called my mom. All is well...nothing new. I'm sure Nate will post soon :)
(Tricia's sister)
A HUGE Thank you, Janet!!!! I guess we're all a little more than hooked on Nathan and Tricia and Gwyneth's story...still praying for a calm day full of good news for them!
J. in OH
p.s. your own blog is pretty funny, Janet!!
Hi Nate and Tricia,
You don't know me but I am a friend for Patience and Jordan Leino. I have been following your blog for the last few months and have watched as God has continued to bless you family. Your faith in God is amazing and is what has kept you strong thus far. I pray for you and all of the doctors involved in Tricia and baby Gewn's care. I pray that Tricia's transplant is a success and that Gwen continues to thrive. Continue to be faithful to God as He continues to be faithful to you.
Katrina McKoy
praying...
Continued prayers from Vancouver. Amazing to read you've made the paper in Ontario. I'm awed and inspired by this journey the three of you are on and how God is shining His incredible love through you. I thank you, Nate, for taking time away from your girls to share some of your life with all of us strangers throughout the world. Know that God is working through you to teach me to be more focused in my prayer, and to appreciate all that He has given me in my life - the people, not the things.
Continued prayers,
Colleen
Cheers for another important step along your journey to new lungs. Praying for the listing to come as soon as possible, and for Gwyneth and Tricia's continued good progress,
can't wait until the day Tricia's gets her new lungs! Now that may be the day that makes your sites crash!!! Praying for her God to bless her with the gift of new life again soon. Praying that before long you will be bringing both of your girls home.
God Bless
Rachel in PA
Nate where are you? No word from you today?
Thank you for the update Janet! Sorry to have worried you but we appreciate you checking :-)
May I offer? Thank you : )
Every post doesn't have to be a spectacular, info filled dramatic presentation filled with gooey love and startling statistics. Yeah we are info hungry, but you can just say steady as she goes Captain- we will understand.
We love you.
I have been lurking here to see how things went... all my fingers crossed for you both... take care and thinking of ya...
That is fantastic news! I am praying so hard for all 3 of you. I am anxious to check in each day and stay up to date and also back track.
As someone told me today, I pray you are able to get some rest tonight and that you all get to enjoy tomorrow. It is easy to get overwhelmed if we look too far ahead. Bless you for keeping us up to date.
Hugs from Virginia!!
Your blog reminds me of the importance of live thus I will continue to check it daily regardless of if you update 5x's in one day, or once in 5 days, it reminds me of the imprortance of live and living. :) It is still one of the best blogs I have the pleasure of reading.
Prayers for Tricia to be listed today, for Gwyn to keep growing and remain healthy and in general for your entire family.
Have a wonderful weekend.
Steph
what good news! we're continuing to pray. here's a short passage, an encouragement to keep on keeping on:
"But since we belong to the day, let us be self-controlled, putting on faith and love as a breastplate, and the hope of salvation as a helmet. Fore God did not appoint us to suffer wrath, but to receive salvation through our Lord Jesus Christ. He died or us so that, whether we are awake or asleep, we may live together with him. Therefore encourage one another and build each other up, just as in fact your are doing."
(1 Thess 5:8-11)
You and Tricia are clearly living and breathing the faith, love, and hope of Christ, and you've been such an encouragement to me and many, many others - more than the hits on your blog can count. Thank you for what you have shared, and don't fear taking a break when you need it. Just keep rejoicing, praying, and thanking. The God of peace is faithful.
Love you guys!
Larissa
Nate,
How often is Tricia allowed to take in a little fresh air? I loved the picture when you and she were outside of the hospital.
How exciting!!! I will continue to pray that she keeps moving up! How exciting!!!
Post a Comment