Wednesday, January 23, 2008

Q&A (With a Helpful Comment)

I don't have enough time to answer every question, and I encourage you to take a few minutes to do some research on your own, but here are the answers to a few questions asked recently:

> I've seen Joe & Kendra a few times, and they tell me that they and their boys are all doing well. I know they'll appreciate your continued prayer.

> I'm talking to some people about the jewelry. I got tons of email about this, and if you emailed me, I promise to get back with you as soon as I can...

> Gwyneth is weighed at least twice a day. She was 1lb 6oz at birth, and like most newborns, she lost a little in the following days. She is at 1lb 5oz right now, and will not gain much until they can really begin feeding her, which will hopefully be in the next few days.

> They do swaddle Gwyneth most of the time, but they also allow her to move around and kick and stretch to help her growth and strength.

> At least in the US, whenever a set of new lungs becomes available, at least two listed patients are called, and the lungs are usually given to the patient that is the best match. The lungs and donor are given an extremely thorough evaluation to determine if they are indeed healthy. Lungs are good for transplant up to 6 hours once they are taken from the donor, but donors are often kept "alive" (although brain dead) for several hours until recipients can be found for their organs.. Of course, the sooner the better, and the surgery usually takes place within 24 hours of the death of a donor.

> Make sure that you are reading the info that I am giving you very carefully. I said that the average life expectancy post double lung transplant is about 8 years. Some patients die in surgery, and some patients like 16+ years. There is no way to tell what the next day holds for anybody living with any kind of transplant. Tricia is young and healthy, so the stats say that she should well exceed 8 years, but again, that's not a given. Some patients are candidates for a second and even third transplant, but many choose not to...lung transplant surgery is the equivalent to your body as being in a severe car accident...extreme trauma.

> Most transplant patients do die because of the diminished health of their new organs or because of rejection or infection. Without a cure for CF, or some miraculous advances in medicine and technology, Tricia will not be alive in 20 years.

> You can find out a whole lot more than I could ever tell you about organ donation/transplantation at UNOS.ORG

> Gwyneth's pug is a Webkinz that was given to us for Christmas. She won't have many stuffed toys as she grows up (for her mother's health), but this one is safe with her for now.

> I appreciate all of the comments about how scary the NICU, etc. must be, but to be honest, the past 7 years with Tricia has prepared me well for the present situation. They haven't done much to Gwyneth that I haven't seen done to Tricia, and I've finally convinced the nurses in the NICU to stop being so apprehensive when explaining things to me...I've told many of them that they'll have to do a lot more than stick and prick to scare me (and yes, I realize that there will probably be complications of some kind that will be scary...I'm still human).

> Tricia has only been able to speak with her voice when she is sitting in a certain position the past few days. This is not due to anything the nurses have done...there is probably simply a leak in the vent tubes that is allowing some air to pass through her vocal cords. Most of the time still, I am having to lip read.

> I am doing very well. The good news makes things much easier. Outside of spending a night with Tricia every now and then, I get some very deep sleep at the hotel every night. My appetite is just as healthy (or unhealthy depending on how you look at it) as always.

> Both of our families are doing well, also. Tricia's mom has been up here for several weeks, and her dad and my parents bounce back and forth when they can. Siblings and cousins and grandparents, etc. have all been to visit and they are just as pleased as the rest of us with the progress of the girls.

> My email is down temporarily, so if you're trying to email me, give me a few days to respond

Nate

(A recent comment from My Dad)

One of the dynamics of blogging is that new people are coming into the story and have missed much of what has been posted earlier. Consequently many questions get repeated.

Nathan has done a great job of cataloging his posts by topic (see "labels" over there on the right side of your screen). He's been incredibly comprehensive. And it's in those earlier posts that most of the questions are answered, ie. breast milk; stuffed animals, etc.

So let me encourage newcomers especially to back track. Not only will it give you a bigger picture (and it's a wonderful picture at that), but chances are you'll find the answers to the questions we've all been asking.

34 comments:

walkingbyfaith said...

I appreciate the Q&A. I rarely ask anything because I have so many questions one comment couldn't hold them all. :) I appreciate what you have answered though.

Hope you, Tricia, & Gwyneth have an awesome day!! :)

Mom of 3 said...

Those pictures of Gwyneth are precious. My niece was born early( a little bigger then your peanut) and her face was smaller then a stuffed Beanie Baby lion I bought her. Brings back memories of sitting with my sister in the NICU praying.

We are still, and will continue praying for your girls!

Melody said...

You explain everything wonderfully!. Thank you for taking the time out of your busy schedule to keep us all informed and educated.

Still Praying!,
Melody

rachael said...

I love the Q&A posts. You always answer so many of my questions (and many I haven't thought of as well)! Still keeping you all in our prayers...
Rachael

TruePraise said...

Nate, you are a real trooper being willing to answer all these questions....

Anonymous said...

On the NICU - Don't let it scare you or people tell you other wise. From my experience with my twins (almost 1 month old) It was a great experience. The nurses are some of the best people I have come in contact with at a hospital.

Kate said...

still praying for you and your girls!

Jane-Jane said...

Tricia, you are one very BLESSED young lady! Your Nate is so patient to answer some of these questions. Not that I would want to be rude, but really, this is a place for love and support, not questioning one of the best medical facilities in the country.

Praying for lots of food for Gwyneth so that she can grow, grow, grow! Praise God she is able to start the feedings through the tube. And then comes the learning how to eat... the steps and milestones are so very precious.

clara said...
This comment has been removed by the author.
refreshing in Ohio said...

You sound a bit stressed...take it easy and don't worry about us! We love you guys no matter what!

Gwyneth looks adorable as always - we continue to pray!

Refreshing in Ohio

Anonymous said...

I love reading about your beautiful family daily. I've been there with NICU too. I pray for you and am always checking on you.

I read your Q & A that they keep Gwyneth swaddled and also let her free. I was wondering if they let you do kangaroo care; skin to skin on you might also help. I can't remember if you aren't able to hold her yet or not. My son was very sick (not preemie) but I know that he responded very well when he was held. Wishing you the best and I am amazed by the strength of both of your ladies.

Court said...
This comment has been removed by the author.
Court said...

Nate ~ thanks for all the answers...but honestly, don't worry about it! My opinion (and it's just that) is that this should be a place for us to let you know that we're praying for you, Tricia & Gwyneth...not for us to ask a bunch of questions. So don't feel pressured or stressed to give us a bunch of information, when you can either be resting, or spending time with your girls. We're thankful for the good reports and continue to pray for you in Houston!

Anonymous said...

OH MY GOODNESS! We have a Pug Webkins and I canot believe your precious little Gwyneth is THAT TINY! Bless her heart. Thnak you for constantly thinking of us out here in cyber world and answering our inquiring minds. You truly are selfless.
Still praying...

Brenda@Lnkweb.com said...

I completely understand the unfailing love of you to your spouse and I have that same love for my husband. Entering the relationship knowing that there will be a sooner end than most people expect in their life, how do you get through the doubts? I am also a believer, but no matter how much faith and belief, we all have doubts. How do you sort through them and push on with a smile and with encouragement rather than having that hold you back?

Rick Lawrenson said...

Quoting Nathan: "The average life expectancy is about 8 years, but that greatly depends on rejection/infection as well as the age and general health of the patient. We know some patients who are well past 15 years on their new lungs."

The key word that some are missing is "average". As he said, some die in surgery, others live 15 or more years with a new set of lungs. So 8 years isn't "time to get another transplant time". It's the average length of time a new set of lungs gives to a recipient.

Keep in mind also (as Nate has explained before) that most recipients are older than Tricia and have advanced age working against them. She, on the other hand has her youth and physical strength (I've seen her throw a softball as hard as the guys) working in her favor.

Thea said...

Still keeping all of you close in thought and prayer.

Emmie said...

Nate - I think that you and my husband have a huge amount in common. He is my fulltime carer as my CF now means there are so many things I struggle with and need help with. He even administers all my IV's and has been trained to flush my port-a-cath. I'm sure I can speak from Tricia's point of view in saying that you are fulfilling her greatest needs in life just by being by her and Gwyneth's sides. Brad (my hubby) and I know that the future looks uncertain, but we also know that whatever happens to me in the future, we will have had the best lives possible just from having found each other and walked side-by-side through life.

As others have said, please don't worry about answering questions and replying to emails...we don't want you being burnt out by trying to help everyone at once!

Please send my love to Tricia and tell her you both have the most beautiful little baby in the world (although I'm quite sure you will have already told her this a million times!) xxxxx

Kristen said...

Hi! A friend showed me this blog a few weeks ago, and I finally got to reading it more...
First a little but about myself- My daugther, turning 3 on monday was born at 35 weeks (5 weeks early) and stayed in the NICU for 74 days. She has Cystic Fibrosis and 22q11 Deletenation Syndrome.
First, as a mother with a CF child, I am so happy for you guys and praying for the best for all three of you. I am thrilled Tricia was able to become a mother (I have hopes of ONE long day in the future being a grandmother so any Mothers who have CF I met, get kudos from me). I am also in awe of your show of faith in this tough situtation. When Kivrin (my daugther) was in the NICU, God wasnt far from our thoughts but not quiet like He is in yours...
Anyhow I do have a couple of questions-
Why would Gwyneth have a limited supply of stuff animals? Kivrin has tons of them but so far she doesnt have any reactions to them. With a tranplants just make Tricia's new lungs that much more sentive to things like that?
You mentioned breast milk...during all this is Tricia providing that or what? Just very curious...I breast feed...
THanks!
Laters
Kristen
Kivrin's story on myspace under Shaylasolo or blog www.xanga.com/shaylasolo

Anonymous said...

Thanks for taking time out to answer questions and be concerned for all your "support team". You are so sweet!
Praise the Lord for another GOOD DAY!
We are praying!!!

Rick Lawrenson said...

I'll interject again, just because I know Nathan is snowed under.

One of the dynamics of blogging is that new people are coming into the story and have missed much of what has been posted earlier. Consequently many questions get repeated.

Nathan has done a great job of cataloging his posts by topic. He's been incredibly comprehensive. And it's in those earlier posts that most of the questions are answered, ie. breast milk; stuffed animals, etc.

So let me encourage newcomers especially to back track. Not only will it give you a bigger picture (and it's a wonderful picture at that), but chances are you'll find the answers to the questions we've all been asking.

Lorraine said...

Nathan - You are a truly wonderful husband and you will be an equally wonderful father to your tiny daughter. I am sure you will have both of your lovely womenfolk back in your life soon and boy will you know about it! I am surrounded by menfolk here, but that's not too bad - I like to stand out in a crowd! Still watching, still sending you extra special vibes and love, xxx

DDinki said...

I would like to clarify a couple of things about lung transplant and lung transplant at Duke.

1. Lungs are the most fragile organ that is transplanted. They can easily be damaged in transport. Because lungs are exposed to the air all the time, they are the most difficult to keep post transplant. Due to immunosupression post transplant patients are even more in danger of becoming ill.

2. At Duke over 95% of lung transplant recipients survive the surgery. Over 90% survive the first year. After that the percentages decline dramatically to about 50% by 5 years.

3. Nearly ALL lung transplant recipients become diabetic post transplant (if they weren't diabetic prior to transplant). This is due to the high doses of immunosupression drugs they are given. For a few patients, the diabetes nearly goes away after the first few months. For others, it is permanent.

4. At Duke most patients walk nearly immediately after they are extubated (the breathing tube is removed). Physical Therapy then comes to ICU at least once each day and helps the patients walk. This continues after they are moved out of ICU to the step down floor, until the patient can walk on their own.

5. Nearly all lung transplant patients at Duke leave the hospital with an IV and several medications that must be given around the clock. Mainly antibiotics to prevent infection. There may be anti-fungal medication along with anti-viral medication too; this is to prevent CMV for as long as possible.

see: www.unos.org
www.dukelungs.org
http://organtransplant.mc.duke.edu/lungHome.html

Allison said...

Thank you for the way you are shining Jesus. I was directed to your blog by another friend's blog, and have been praying for you all since. God is being magnified through your lives.

Patty Honeycutt said...

Every time that God brings you and your family to my mind I pray for you. This happens often. What a blessing you are for your family and to the whole blogging world. For you specifically I pray continued strength and wisdom. And lots and lots of peace and joy. I heard about your family through Patience and Jordan Leino. I really love and admire the two of them. God bless!

maggiemae and family said...

i dont have any questions :) just wanted you to know that your family is being thought of and prayed for, thanks for all the updates. you are a strong man!!

Anonymous said...

Nate, Tricia & Gwyneth...what a beautiful family...you are in my thoughts and prayers.

My brother just had a double lung transplant at USC - unfortunately he had a really RARE complication and died after 3+ weeks in the ICU. But I know that he never regreted the decision.

I was glad to see that someone else commented about the info on lung transplants. The only other thing I would add is that because the lungs are THE most fragile organ to be tranplanted, they also have the SHORTEST time span from donor to recipient. Once donor lungs are removed, there is only a 5 hour window in which they must be transplanted and perfusing blood through them. The only time the surgery could take place 24 hours after "the call" is if the donor is still on life support machines.

Not a criticism - just wanted to help with the transplant info - please hear it in the spirit in which it was intended!

God Bless you guys...isn't the blogging world fun...I myself have a chronic lung disease and a website - boy does it open you up to all sorts of things...

Be blessed and covered by the Blood of the One & Only Living God!


Rose, CA

JonesFam4 said...

New to your blog, thanks to someone else...will be praying for your family and admiring your faith, its a beautiful thing to see a family with an eternal perspective that's up front in their thoughts. Enjoy that baby!!! Appreciate being able to read thru your journey

Patty said...

Nathan, and Rick, thank you for taking the time to answer all sorts of questions. I learned a lot by going "back in time" through the blog, and reading Tricia's blog. Praying for you all.

Muriel and Jerry said...

I love you blog for what it is:

A glimpse into the lives of an amazingly strong family in every way.

A chance for renewed faith for me personally.

A reason for me to pray with such a strong purpose.

Reassurance that no matter what happens with my pregnancy it is in God's hands and my faith will see me through.

Thank you for all you have given me. I want you to know that you are doing a great job. You are a great husband and a great daddy and a fantastic example of what living in his name is all about.

Cara said...

As a fellow CFer, your story has touched my heart in ways that I can't even begin explain. I have been praying for your family and will continue to do so, as I have experienced the power of prayer and know how amazing it is. Thank you so much for sharing your experiences with us!

debangel said...

What a great Q&A. I actually have a question you didn't answer...have you named Gwyneth's pug? (We have a black pug named Winston, because he looks like Winston Churchill, so we are partial ;)

Still thinkin' about and prayin' for you here in not-sunny-at-the-moment southern California!

Anonymous said...

I have CF and have been there and done that. I also had a preemie who is now 2 and is doing wonderful! I had my double lung and liver transplants a year after he was born. Just a little comment about what you posted about the lungs being good for 24 hours.....that's only if they are still in the donor. Once they come out, they have to be transplanted within 6 hours. Tricia and Gwyneth are truly an inspiration to many people!!

L.Bo Marie said...

lol.. I'm still slugging thru the back posts... well worth it though