Tricia's still sleeping at 12:20pm, which gives me an opportunity to blog some more...
> If you are interested in getting my permission to play our videos for church events/services, please do so by Emailing Me.
> We've been told that Tricia has been given a score of 55 (out of 100). Apparently, 55 is incredibly high, and places her on the top of the list for patients here at Duke. That's a good thing.
> Parents of preemies (at least, here at Duke) are given the freedom to decide what they're preemie baby is going to eat, assuming that the baby is actually able to eat. The options, as far as I understand them, are basically either the birth mother's milk, donated milk or formula.
> (this varies between different transplant centers) Organ donor recipients are given the option to send a letter/card to the donor's family a year after the surgery (some choose to contact, others don't). Neither side is given any information about the other (race, age, cause of death, reason for need, etc.) until this first contact, and the primary communication is done through the transplant organizations. If the donor's family wants to respond, they can. I've heard of many stories of the donor family having a kind of adoptive relationship with the donor recipient.
> I've created a new label titled "Q/A". Click Here to see every Q&A post and find answers to other questions.
I've already blogged several times today, so don't miss the stuff below...
When NHC's elders approved your extended leave/alternate workplace plan, they didn't even have the knowledge that you could in any way use it to be a missionary from NHC to the world. You have honored their decision and God by using this opportunity the way you have. I know I speak for all the NHC family when I say thank you for that. We "get it" that church doesn't just happen inside the walls of our building. God is so much bigger than that! Pastor Rick's been teaching us that for years, and even he didn't know how God would use it with his own family. I'm glad once again to be able to assure the people from around the world that you and Tricia and both of your families are the devoted, loving servants that you seem to be online.
That is awesome that Tricia is at the top of the list. I wonder if there are parents who choose formula for their preemies? I guess there may be some circumstances that require it. Thank you for providing some much info for us!
With Love and Hope,
Thank you for being so transparent - I have not only learned so much about trusting the Lord but about cf, premature babies, blogging, photography, organ donation... it is truely a blessing to log on and, not only see how your family is doing and how to pray for you, but also to learn something new! (and I have to agree with Roxanne - you are taking your story to the world, the story of how God is faithful). God bless - still praying!
I have not been able to check your blog for the past few days, so it was great to catch up today!
My family & I continue to pray for you, Tricia & Gwynweth. My daughters ask EVERY DAY about Gwyneth! They are facinated with her & LOVE hearing details & seeing pictures to find out how she is doing. Thank you for keeping us all so well up to date!
Also, thank you for being specific regarding prayer requests. Before you mentioned it a few weeks ago, I had not really considered the family of the person who may be donating their lungs to Tricia. Thank you for encouraging everyone to pray for them!
Lord, I ask for you to continue to bless Nate, Tricia & Gwyneth. Thank you for working so beautifully in their lives! I pray for them to be surrounded by love & encouragement. I also ask that they will draw their strength from you & keep their focus on you. Thanks you that the rest of us get a peek of your amazing love through their lives! Amen
~Sara in MD
YES! Praise God -- the top of the list!! Now, He will provide in His time. Be patient, as you already show you are.
Contacting the donor family is a very personal choice. For the first two years, I kept feeling that I would be an intrusion upon their family and events that may be happening with them. Finally, I wrote a letter, and although I never heard back, I know what I said to them. I have always prayed for the peace of Christ to be upon them. Some develop a wonderful relationship with their donor families...others who don't can always continue to praise God, pray for the family and rejoice in their loved one's second chance.
I feel that whatever approach you & Tricia make will definitely be led by Him.
God bless you and all of your efforts as well as your wonderful wife and most beautiful daughter.
Skimmed this in a hurry. Thought you said Gwyneth could choose from breast milk, donuts or formula.
She'd probably like some donuts.
Donuts are yummy. I vote for that. Chocolate glazed preferably.
Organ donation has been an important thing in my family esp. since my uncle is alive because of a heart transplant. So thankful she's at the top of the list PTL!! Thanks for all your info on organ donation!! Very helpful stuff.
Just stopping by to say that I am praying for you all. Its been a busy couple of weeks here, so my comments/blogs have slowed down, but I am still around.
Hi Nate and Tricia,
I am so glad that things are moving ahead with the transplant. That's so exciting--I know I was excited and wanted the phone to ring *right away* (patience is not a virtue I possess).
Re: contacting donor family--I did, at precisely my one year mark, and it was one of the hardest things I'd ever written, because I just wanted to write "thank you" across the pages. I haven't heard back from my donor's family, but I have talked to other donor families through my transplant awareness work here in Ohio, and they say that just hearing "thank you" and knowing that you are living your life is wonderful.
I have put the link to your blog on mine, under families to pray for. If you would like me to remove it please tell me.
Praying either way
Praise God that Tricia's score allows her to be close to the top of the list. I truly expect to see you and your family all go home together!!!
Now, where is Part 10 of the story of Nathan & Tricia? I have been on the edge of my seat for about a week now!!! I feel like I was engrossed in a movie and the tape broke!
Much love to your whole family,
Susan in WV
Hello, I was surfing around and found your blog. I wish you two nothing but the best. I'm a 25yr old CF patient, and I just had a double lung transplant in St Louis in November.
I feel amazing now, and I hope you two will be getting that call soon!
When I relocated to STL, I was a 39 score, which they told me was pretty high for a CF patient. I waited on the list for just under 3 months, I had 1 dry run about 6 weeks in, but then I finally had my transplant in November.
I'm assuming with a score of 55 you should be getting the first set of lungs that matches blood, height and CMV status.
I'm thinking of you guys!
I also found CFSocial.net which is a myspace type site for cf patients and family and friends to keep in contact. You might want to check it out, people have some nice info and tips about the transplant process!
Cheers to both of you, opps! All three of you!
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