10:12pm Update

Tricia got to go outside today for only the second time in the past 2+ months. She continues to feel a little better everyday. She may be developing an infection in her lungs, as she is coughing up more, thicker mucus. Please, pray with us that it is not an infection.

She also updated Her Blog today, so check it out!

Gwyneth Rose is doing a little better. Her Xrays are looking better, and she was scheduled to be extubated and placed on the CPAP this evening.

We had a two hour interview with a local newspaper this afternoon. The article should be published in a few weeks, and I'll let you know if you can find it online. I've been told that the TV interview should air sometime next week. I think it will also be online, and I'll let you know.

Thanks!

Nate

(Bump) Tangible Love

Wednesdays are good for Recycling! This was originally posted on 1.4.08.

In the middle of all this, as I walk the halls of this hospital, seeing people in mourning, pain and stress, overhearing bits of conversations between nurses and doctors and patients and families, I cannot imagine even attempting to go through what we are going through without both God and the people who are surrounding us who also believe in and know Him in a personal way.

We have a hope that cannot be explained or understood in this world alone...a hope that, no matter what happens to my wife and unborn daughter, it will be the best for each of them because God has them exactly where He wants them.

If they both survive the next few days, then weeks, then months, I will have much to be thankful for. And, if either or both of them do not live through this, I know that they will be in Heaven at the feet of a very real God, and that one day I will see them again, and that is truly the greatest joy. I can't imagine not having that hope.

I believe these things to be absolute truth beyond a shadow of a doubt. I don't simply believe that there is a God...I know that He is alive and working in our lives with love and mercy.

You all have been praying for us, and we have felt and seen your prayers in a powerful and real way. Tonight, I will be praying for you. I will pray that you are not only "touched" by our story, but that you see it for what it really is...simply a small part of the Story of God.

If you already have a real faith in Him, I pray that your faith will be strengthened by our part of the Story and that you will realize your part of the Story can be just as powerful and world-reaching as ours is becoming.

If you do not have a real faith in God, I pray that you will see the truth in our story that goes beyond miracles and faith and compassion...that you will see this as pure evidence, no matter the outcome, of God's desire for you to know Him in a very real and tangible way.

And, I will pray that one day, we can take all of the blessings that you are giving to us and give them back to you and others twofold. We have beautiful friends, Jordan and Patience Leino, who went through something very similar to what we're going through not even a year ago. I have always believed that, if we allow Him, God never wastes a hurt, and that He will always use a painful experience to bless others going through similar experiences. Jordan and Patience (and all of those who have discovered us through them) have been blessing us in that way, and I believe that one day, we will have the opportunity to do the same.

Thanks!

Nate

Q&A

> Tricia won our game of Scrabble yesterday by the score of 203 to 199. She is a spelling wiz.

> Tricia has only been outside that one time...the cold weather and the Flu have kept her from going out again.

> Tricia hasn't eaten much except for a little apple sauce and chocolate pudding. She is fed mostly via her feeding tube throughout the day.

I've had several questions about CF/Transplant related diabetes. I am not an Endocrinologist, not do I play one on tv, but here are a few things that I think are true about this subject:

> CFers are prone to diabetes for a few reasons:
- Most CFers are on a high fat/high calorie diet (which usually means high sugar/glucose levels) to help keep their weight up.
- The Pancreas is one of the organs affected by CF. The Pancreas produces Insulin. It makes sense that CFers are prone to insulin deficiency (meaning they produce insulin, just not enough).
- Many CF drugs, especially steroids, can cause diabetes.

> Tricia may or may not have had diabetes before being pregnant, but it wasn't detected until after she became pregnant. Of course, Gestational Diabetes is very common.

> So far (since delivering the baby), Tricia is still having issues with her blood sugar, which means that, especially with the upcoming transplant (and all of the transplant steroids that she'll be taking), she'll probably deal with diabetes for the rest of her life (which will also make for some crazy dietary restrictions...).

Thanks.

Nate

We Can All Give Back

When you're a life-long hospital patient like Tricia, especially with a disease like CF and facing things like double lung transplants, you get a lot of requests for "studies" and "trials". Everybody wants to use you for some kind of research related to CF, high-risk pregnancy, premature birth, pulmonary diseases, etc. Some of these studies/trials are very simple and don't involve anything more than signing a few pieces of paper, but most of these studies involve being poked and prodded, trying experimental drugs and treatments, and asked lots of personal questions, etc.

Since being placed on the list last Friday, Tricia has been asked to participate in 4 different studies. One of these studies involves examining her old lungs after they've been removed from her body via the transplant surgery.

Over the years, Tricia has been asked to sign the legal papers for hundreds of these studies/trials.

She has never said "no".

Tricia believes that her purpose in life is to give God glory by allowing Him to use her CF to be a blessing to others. She has participated in numerous studies that have been used to discover new techniques, meds, treatments, etc. for CF and other diseases.

And, Tricia is not alone. It is because of the willingness of others who have gone before her to participate in similar studies that Tricia is alive today. Even baby Gwyneth has already been signed up by her father for a few studies of her own.

Tricia also desires that her body be donated to science and research upon her death. Because of her disease (and other circumstances), Tricia's body won't be much good for organ donation...but, she can still make a difference by allowing researches to learn more about CF and other medical issues. She told me about this desire of hers a long time ago, and although it's not exactly what I think I would have decided for her, I have promised her that I will be sure that it happens.

I tell you this for two reasons:

1) If you are ever asked to participate in a medical study or clinical trial, I hope that you will at least consider the lasting effect that it could have on millions of other people in our world. These studies are not for everyone, but they do help everyone.

2) If I haven't yet convinced you, yet, to become an organ donor, I hope that this post will possibly help move you a little closer. Organ donation isn't for everyone, but it can help everyone.

I continue to be amazed at my wife and her willingness to help others, even as she is in the middle of an extremely difficult situation. Just today, she reminded me of her wishes. Every time she is asked to do a study or trial, she barely even gives the person time to explain what it is all about before she says, with a smile on her face, "Yes, I want to help other people."

Thanks.

Nate

(Bump) The Risks of Life

Mondays are good for Recycling! This was originally posted on 1.21.08.

(If you're unfamiliar with the details of the choice we made to keep Gwyneth when we discovered Tricia was pregnant, I recommend you Read This First, before reading the rest of this post.)

I've been thinking about risk today. I've always been a very cautious person, not willing to do lots of crazy things, rarely having the guts to break the rules, etc. I'm sure that is hard to believe for some people who have read our story, knowing the great risks we've taken to keep Gwyneth Rose. Even before reading a few recent comments (some of which appear to have been posted as kindly as possible, which, again, I appreciate), I knew that the risks we're taking are hard for many to understand.

Please, know that I am only posting this because I myself find it to be an interesting conversation. I'm not trying to defend our actions, nor am I attempting to convince anyone that the choices that Tricia and I have made in life are the same choices for everyone. I'm simple putting this out there because this is my blog and I can do what I want to with it (I say that in fun).

So, here are a few things I know to be true about risk:

1) "Risk", as a noun defined by Dictionary.com:

> exposure to the chance of injury or loss; a hazard or dangerous chance.

> the degree of probability of such loss.

2) It's impossible to live this life without taking risks. Getting out of bed each and every day involves a certain level of risk. Love, food, travel, friendship, money, and so many other aspects of every day life involve risk. There is really now way to know for certain the risks or outcomes with anything in this life.

3) Everybody lives their life based on calculated risk. There are certain things that I do and don't do that are (at least in part) based on risk factors. There are things that you might do that I am unwilling to do based on risk. My life is as "boring" or as "exciting" as I want it to be (again, in part) based what I perceive to be the calculated risks involved with each action.

4) Pregnancy is always a risk. Hopefully this isn't news to you, but a healthy pregnancy, for both the mother and child is never a given thing. In fact, The (US) Statistics Show that the risks for complications for mother/baby during and post pregnancy are very high. Every mother should be made aware of the possible risks involving her pregnancy. Preemies are born every day, many to completely healthy parents. (I'm NOT trying to scare anyone...hopefully this info comes as no surprise to anyone)

5) A person's belief system plays a huge role in determining the risks he/she is willing to take. Whether a Buddhist, Agnostic, Christian, Muslim, Atheist, Occultist, etc., or no label at all, you and I make our decisions based on what we believe to be true about truth, family, faith, eternity, morality, ethics, and everyday life. And, people with different belief systems will never agree with or understand each other entirely.

6) The greatest rewards are often a result of the greatest risks. I think our story is evidence enough of that...

Tricia and I have made our choices, especially over the past few months and years, based on our beliefs. Waiting until after our first year of marriage before trying to start a family was a risk that we were willing to take based on our beliefs. Trying for two years to have a child was a risk that we were willing to take (and one that our doctors were supportive of). Stopping our efforts and moving forward with the double lung transplant was a risk we were willing to take. And, carrying an unplanned (at least our plans) pregnancy was a risk we were willing to take.

Some have criticized our choices, and many more have simply not been able to understand. And, quite honestly, that's OK with us. While we understand how others could have chosen differently than we did, we can't understand how we could have chosen differently.

Thanks!

Nate

PS. I've disabled comments under this post because, as I said, I'm not looking to start a debate or a preach-a-thon for any side of this subject. If you want to discuss this with me, feel free to shoot me an Email. And, as always, I don't assume that anyone will read or care about anything I have to say...if you do, thanks!

Preemie Milk (Part Deux)

Here is an article about the local milk bank. There are NINE milk banks in the US (I said I thought maybe seven, before).

Nate

Preemie Milk

To clear this up (even though I've blogged about it before)...

Tricia is unable to feed Gwyneth because of all of the meds she (Tricia) is on (and some other reasons).

Therefore, Gwyneth is eating donated preemie breast milk from mothers of other preemie babies. Don't ask me how it works...all I know is that I have been told, by the NICU people here at Duke, that there are about 9 "banks" in the US, and one is very close to Duke, which makes for easy access for the NICU here at Duke (many NICU's that are not near a bank have a difficult time obtaining donated milk from a bank). She eats milk that is appropriate for her age, and as she grows bigger and older, will be given different milk from mothers of babies of the same age/size.

You can read more about preemie breast milk Here.

That's all I have to say about that.

:)

Nate

A Few "Thank Yous" Are In Order

Tricia has been begging me to mention a few people on the blog that she and I want to thank. I continue to be amazed at how many medical "professionals" come into the room to talk with us about medical stuff, and end up getting, at least, slightly teary-eyed because of their personal involvement with Tricia (IMO, that's a very nice thing). And, I'm even more amazed at how many of them (just about everyone) have heard about this blog...I have no idea how it's getting spread around so much unless they've actually got it written down in her charts somewhere.

These are people who have made a huge difference in our lives over the past several weeks, months and years at Duke by providing Tricia with the best possible health care (that good insurance can buy). We cannot thank these people enough.

(I'll not mention full names because I don't know if all/any of these people want their names blasted across the internet...and, we really just want them to know that they're appreciated)

Dr. K has been Tricia's primary CF doctor for about the past 6 years. We both believe that, beyond her own lifestyle choices, it has been the efforts and skills of Dr. K that has allowed Tricia to live the life she has had for the past 6 years. Although we don't always see eye to eye, and he is a Yankee through and through, Tricia loves and respects him.

Edana is Tricia's CF nurse practitioner and her best friend at Duke. She is the yin to Dr. K's yang, and Tricia loves her dearly. Edana has invested many hours being a great source of encouragement to Tricia, especially over the past several weeks.

Bill is Tricia's CF social worker, and one of our favorite people in the world. He has taken a lot of professional and personal time to invest in our lives as well as in the lives of our families. Bill attended our wedding, has been a great advocate, and sat with our parents and I in the waiting room during Gwyneth's emergency C-Section.

The 7800 Team has been the hands-on care for Tricia during most of the time she has spent as an inpatient at Duke over the past 8 years. The doctors, nurses, RTs and other staff have provided great care and friendship for Tricia. Even while she was in the ICU recently, I felt compelled to take a walk through 7800 every few days and give the latest update on the two girls as I was swarmed by their familiar faces.

The Physical and Occupational Therapists (in the hospital) are both Tricia's best friends and most hated enemies. These are the people who have the heart of encouragement and the skills to help Tricia maintain or return to her best possible health. This team has especially gone above and beyond recently in helping Tricia prepare her body and mind for the upcoming transplant.

The 8200 ICU Team went so far above and beyond what we could ever have expected. I'm not allowed to even tell you half of what they did for us, and for that we are eternally grateful. Every person was almost perfect in every way. Several have come to visit Tricia down on 7800, which is very nice. A special thanks to Dr. M.

The OB Team who helped care for Tricia and delivered Gwyneth. The OB clinic appointments were, of course, our favorite, and the care and attention provided to us (even now) in the hospital has been amazing.

The NICU Team for taking such incredible care of our little White Rose. I really don't think there's anything else we need to say about that. :)

The Center For Living Staff have been an intimate part of Tricia's life over the past several months as she had been working with them 4-5 days a week for physical therapy. They will continue to work with her post transplant, and have been following her journey closely as she has been in the hospital these past several weeks. She misses you and the other patients!

The Transplant Team has been and will continue to be an incredibly important part of our lives. This huge team is responsible for just about everything involving Tricia's entire transplant journey. They have lots of tough decisions to make about so many patients, and their care and concern for Tricia has been very evident.

Our Nags Head Church Family who have provided such a loving and strong support for us during this journey. Even though most of them have been unable to be here in Durham, we know that they have been on their knees in prayer and thanksgiving for all that God is doing in our lives. We miss them and love them all so much.

Our Family and Friends who have spent so much time here with us over the past several months and weeks. So many to even begin trying to name. We are so thankful for their presence here (those who have been able) and can't imagine even making it through just a few days without them.

I'm sure there are so many more who we are forgetting at the moment, so please, if you're reading this and we haven't mentioned you, it's only because our brains are fried. :)

Thanks!

Nate

Update and Q&A

Tricia got about 10 hours of sleep last night! She's already getting sleepy at 8:30 tonight. She sill has some catching up to do. She was feeling a little sick earlier, but is feeling better now. She received a blood transfusion today because she has been Anemic for several days...this will help prepare her for the transplant.

No word from the transplant team today, so we'll assume that we haven't been listed...

Gwyneth was back on the CPAP today...didn't do so hot on the nasal cannula last night, but that's not surprising at all at her age. Other than that, she's having a great day.

Time for some more Q&A!

> I use a Mac software called iMovie to make the videos that you've seen on this blog. As far as video editing software goes, it's junk, but it gets the job done for what I'm doing on this blog.

> When Tricia was born in 1982, the age expectancy of a CFer was in the lower 20's...the life expectancy for a CFer born today is in the mid 30's. It's because of this reason that CF has been labeled as a pediatric disease, and why it does not get nearly the exposure as other terminal diseases. So, Tricia has lived beyond her age expectancy. We have heard of a few CFers who are still alive past 50, but as I've mentioned before, every CF case is different...some are incredibly aggressive, and others are so mild they're not even diagnosed until adulthood.

> Tricia has a horrible memory for dates and times, so those of you who think she's all right about her side of our story are suckas... ;)

> We did get several weeks while Gwyneth was still in the oven to feel her kicking and moving around. Most mothers can begin to feel their baby moving around week 17. Tricia felt her for the first time on Thanksgiving day, here in the hospital.

> This blog is not one on which I want to get into deep theological discussions...that doesn't fit it's purpose, and I'm not smart enough to answer most of your questions anyway.

> I did send an email out to the K-Love contest, but only because somebody asked me to via email a few days ago. I don't listen, so if they mention our name, please let us know.

Joe and Kendra's preemie boys continue to do well. BJ and Tonya's preemie boy was having some difficulties this past weekend, but I haven't seen them in a few days. I know they would all appreciate your continued prayers.

Alice continues to do incredibly well...she was actually discharge from the hospital, which is amazing. If you want to read some great insight on what a TX patient experiences, check out Her Blog!

Thanks!

Nate

The Past Few Days

With Tricia's permission, I'd like to share a little about what's been going on with her over the past few days...

Basically, since Friday, and especially on Sunday and Monday, Tricia has been dealing with a serious case of Psychosis/Delirium (the for sure diagnosis has not been established yet). There were probably several factors that brought this on, including lack of sleep, postpartum hormones, lots of meds, and the physical, emotional and mental toll that the past several months has taken on her body.

The first signs came on Friday morning when Tricia began saying things and acting in ways that were not characteristic of her. Over Friday and Saturday she became increasingly anxious, stressed and confused. Early Sunday morning, while I was at the hotel sleeping, she woke up thinking and yelling that her nurse and other staff were trying to kill her. They had to use physicall force to calm her down, and she spent time off and on until about 10am on Sunday sleeping.

When I arrived back at the hospital Sunday morning, I could tell right away that she had gotten worse since I last saw her. She was beginning to spend several minutes at a time zoning out and being unresponsive, and when she did seem to be with us, she was very paranoid and confused. This behavior increased all day and late into the night until, by the time she got to sleep with the help of some haldol, she was spending almost all of her time staring off into space, occasionally repeating (either with her lips, or, when she could, with her voice) a word or phrase over and over again.

I stayed with her all that night, remaining mostly awake, and Agnes and Don arrived early Monday morning to allow me to go to the hotel and sleep for several hours. When I arrived back at the hospital around 3pm on Monday, her condition was about the same, and remained that way until later that night.

All during this time, I had a peace about what was happening. For reasons I won't explain right now, I was very sure that Tricia was going to be OK...that she was simply allowing her mind to take a break because she had been through more than her conscious was willing to handle. I was certainly very scared and concerned for her, but deep inside, I knew that God was giving me comfort to know that she was safe.

All day Monday, they put Tricia though several physical/mental tests and scans, all of which came out negative. Around 10pm, Monday night, she began growing increasingly annoyed and even angry and upset. Around 11:45, she woke up from a short sleep very upset, and it took everything for her nurse and I to hold her down and keep her from hurting herself until other staff could come in and help.

They gave her some haldol, and within 15 minutes she was sleeping. She slept very well until about 7am Tuesday morning, and when she woke up, she seemed to be very lucid and communicative, although she was still a little anxious and confused. The past two days have been very good, and she has not had any issues and has grown increasingly comfortable and relaxed.

She tells me that she can remember some of the past few days, but a lot is very blurry. We're hoping that today they'll move her out of the ICU and back to her normal floor where she'll be much more comfortable.

I'm sharing this with you for two reasons:

1) We want you to know how much we've appreciated your thoughts and prayers, especially over the past few days when you weren't even sure what to think or pray for.

2) We want to document as much as possible so that other CF, Transplant and High Risk Pregnancy patients who come after us will have as much information as possible to work with (even though Tricia's experience is NOT the most common).

God continues to show His hand of protection over my two girls. Beyond a few hours on January 8, this past week has most certainly been the most difficult to get through, and I've relied more heavily on His promises and your prayers and encouragement.

Thank you!

Nate

(Bump) Psalm 34:1-4 (The Message)

If you've been with us for a while, you've probably read this passage from the Bible with us. This is my favorite and the one I always remind myself of when things get tough.

I bless God every chance I get;
my lungs expand with His praise.

I live and breathe God;
if things aren't going well,
hear this and be happy:

Join me in spreading the news;
together let's get the word out.

God met me more than halfway,
He freed me from my anxious fears.

Psalm 34:1-4 (The Message)

Nate

PS (Risk)

Meant to put this down there in the last post, but somehow forgot.

The greatest rewards are often a result of the greatest risks.

Nate

(BTW, I'm not mad or sad about any of the posts that have questioned our decision, and I encourage you not to be either. I welcome any opportunity to discuss these things with anyone who comes with an open heart and mind. Thanks!)

Edit

I realize that I did not do a good job of explaining an important detail of our story, and I thought it would be good to just make sure the picture was clear for everyone. Near the bottom of "Our Choice (Part 1)" I made this change (new text in bold):

All during that time, while Tricia's CF doctors informed us of the risks, they were also very supportive of our decisions. In the spring of this past year, however, they finally told us that a pregnancy would be more risk than we were willing to take. So, although it was very difficult, especially for Tricia, we halted our pregnancy plans.

Thanks!

Nate

Our Choice (Part 2)

(Read Part 1 First)

We decided that September 4 would be the day that we would officially make the transition to Durham and Duke to begin the physical therapy that Tricia would need before being placed on the Transplant list. We moved out of the house we'd been renting for two years (in Nags Head, NC) and placed most of our belongings into storage while taking our bedroom furniture, medical supplies, clothes and a few other things into a spare bedroom at my parents house (where we planned on staying when we cam home on the weekends).

September 3 was a Sunday, and that night, as our church gathered together for a service, I took the stage to share the new and plans with many of our closest friends and family. Tricia stayed home because she was not feeling well (not unusual). Little did I know that, literally as I was sharing our plans with the church, Tricia was finding out that God was about to take us on a huge detour.

When I arrived home that night, feeling a sense of relief from telling the church about our plans, Tricia met me at the door with, "I have something to tell you, and I'm not sure how you're going to react..." Of course, I'm thinking our dog had gotten run over by a car, or something crazy... She took me into the bathroom, showed me the pregnancy tests (I think she used three just to be sure) and told me that she was pregnant. God was giving Tricia her miracle.

The next day, when we arrived at Duke, we immediately set up appointments with the transplant doctor, the OBGYN and Tricia's CF docs. The transplant doctor's reaction (spoken) is not something I want to repeat (I like to keep this blog PG), although I thought it was a funny at the time. He advised us that our best choice would be to terminate the pregnancy.

The OBGYN told us that she had never once recommended to any of her patients to terminate a pregnancy, but in Tricia's case, she was making the exception.

Tricia's CF doctors already knew exactly what our decision was going to be about the baby, and other than a look of shock, they were very supportive (as was everyone else once we told them of our choice).

This morning, thousands of churches across our country are remembering National Sanctity of Human Life Day. (read My Dad's Blog for more about the history/purpose of this day)

In years past, I've taken part in considering what this day is all about, but it's always been just a passing thought. A few years, I didn't even really think about it at all.

But, this morning, this day has taken on such a completely different meaning. In the past, it has been about standing up for what my Christian world view tells me is right and against what is wrong. But, now I'm seeing those things as the smaller picture.

God is showing me, through the life of my wife and my daughter, that today is really about two things.

1) Sanctity of Human Life is about trusting God.

No matter what side we may fall on with the issue, abortion is not a belief. It is a choice that is birthed out of a belief. Our belief was that God wants what's best for lives, that it was God Who allowed this pregnancy to happen, and that it needs to be God who determines the final outcome. Because of our belief in God, our choice was easy.

For us, abortion was not about life or death, murder, right or wrong, etc. Our choice simply came down to whether or not we were seriously willing to trust God. And really, what else did we have to hang on to at that point? To abort would mean to turn our back on God, and Tricia's chances of surviving the pregnancy were 50/50, Gwyneth's were even less, and the window of opportunity for the transplant seemed to have come and gone. But we knew, beyond a shadow of a doubt, that God was answering our prayers by giving us this opportunity.

2) Sanctity of Human Life is about making the most of our time with others.

If I have learned anything during the past few months, it is that my time with Tricia, and her time with me and others she loves is never a guaranteed thing. I have probably spent more time with Tricia in the past 5 months than I had the previous 3 years of our marriage.

I have seen my attitude and perspective change about certain things regarding my role as a care-giver. The things that used to make me cringe, I do with joy. The tasks that caused me to roll my eyes because I missed a few minutes of television show, or a few seconds of football game have become the things that I look forward to the most. My favorite part of the day now is getting into my Jeep and driving to the hospital, knowing that I have a full day of just being with or around Tricia and Gwyneth.

It would only take a few moments for me to easily become a childless widower. But, that's really how all of life is. We never know what the next second will bring. I hope to never look at life the same, never again choose to take my family and friends for granted, and never pass by another stranger without looking for an opportunity to be a blessing.

I am not perfect. In fact, I consider so many others in my own life to be much more spiritual and strong and loving than I am. All I know is that, the moment we made that choice to trust God, my entire life changed.

And, for me, that is what Sanctity of Human Life is really all about. Simply living life in pursuit of loving God and loving people does so much more to change hearts and minds and lives than any hellfire sermon, political personality, or picketing campaign will ever accomplish.

Tricia literally came within a few breaths of sacrificing everything to give Gwyneth life. If that had been the case, and even if that is still what happens, to know that we have trusted God with our choice will get me through today and tomorrow.

God is answering both of Tricia's life prayers, at the same time...He is doing something extraordinary with her life by giving her the miracle baby.

I pray that today, you will take time to consider that human life is sacred because it comes from God, spend time appreciating the life you've been given, and love on the people you find yourself with.

Thanks!

Nate

Our Choice (Part 1)

For all of her life, Tricia has been praying a very specific prayer, that God would use her life with CF to do something amazing and extraordinary. And, for the past few years, she has added a second specific prayer. Until recently, this second prayer was a secret from all but a few people...it was even a secret from me.

But, first, let me give you a little background about us.

Tricia and I met about 7 1/2 years ago one Sunday morning at our church (I promise I'll give you the whole story another time, 'cause it's good). It was love at first site for me, and we began dating almost a year later. I was (and still am) Tricia's first and only boyfriend.

I knew that this was the girl for me, and very early on in our relationship I explained to Tricia and her parents that I fully (or at least as fully as I could at that point) understood Tricia's disease and what that might mean for my future. While we wouldn't be married for another three years, I told them all that I was committing, then and there to becoming the caretaker that Tricia would need. I promised that I was looking to marry Tricia, and that if I had any doubts up to that point, I would have already bailed because I knew Tricia didn't need the stress of a hurtful relationship on top of the hardships of her disease.

I was 20 and Tricia was 19.

Tricia was in good health while we were dating, with just a very slow descent. Even when we married, you would never have known she had a killer disease. But, we knew that there were no guarantees, and that even a simple cold could literally become deadly for her in the matter of a few days. Talk of marriage came early, and we soon decided that we wanted to take advantage of every minute of our lives together. On August 24, 2003, we became engaged. We were married less than a year later on June 27, 2004.

The day after our honeymoon ended, I began my first full-time job (as worship leader at Westwood Hill Baptist Church) in VA Beach. Neither of us had finished college at that point, because, again, we wanted to make the most of the time we had. Some people thought we were foolish, and it wasn't an easy decision, but looking back, we know it was exactly what God wanted for us.

We knew we wanted to start a family, but we also wanted to have at least a little time all to ourselves, so, we gave ourselves about a year to just enjoy being two. That first year of marriage was full of fun and excitingly new things for us.

God did not make a woman more perfectly fit to be a mother than Tricia, and, although being a father scared me (and still does), I've always known that it was what I wanted as well. For nearly two years, we tried to get pregnant.

I know that this is not a long time compared to many stories I've heard, but, because of Tricia's declining health during that time, we new our window of opportunity was not very large. And, because of Tricia's CF, as well as some other issues, we knew that conception was a small chance and pregnancy a huge risk for the two of us.

All during that time, while Tricia's CF doctors informed us of the risks, they were also very supportive of our decisions. In the spring of this past year, however, they finally told us that a pregnancy would be more risk than we were willing to take. So, although it was very difficult, especially for Tricia, we halted our pregnancy plans.

At that same time, Tricia's docs also advised us to consider being evaluated for the double lung transplant that could save Tricia's life. The 5-day evaluation process took place at the end of June with good results (meaning Tricia was a candidate), and we began making our plans to transition to living part-time (and later full-time) in Durham.

All this time...all the while that we'd been married, Tricia had been praying that secret prayer. She knew, that what she was praying for would take something that beat the odds, that defied science and that could only be explained by God.

Tricia was praying for a "miracle baby".

(Part 2)

Double Lung Transplant 101

Now that Gwyneth Rose is here, the focus of our life takes a huge "reverse" step back to around the first of September when we were preparing for the physical therapy that would help place Tricia on the double lung transplant list.

Tricia has already completed the required number of days of PT, but with the journey through past few months of pregnancy, a few new steps are before us now:

> Getting off of the ventilator, which means renewed strength/function of her lungs.
> Proving to the Duke transplant team that Tricia is healthy enough to be placed on the list. There is a small window of opportunity in which a patient must be sick enough to warrant a transplant, but healthy enough to have a good chance of surviving the surgery and achieve an improvement of health post surgery.

One of the transplant doctors told us (just before Gwyneth arrived last week) that it would probably be at least a minimum of 2-3 months before Tricia would be healthy enough to be placed on the transplant list. Candidates are placed on the list in order of the greatest need. We've known people who have been listed for less than 24 hours before receiving the call, and others who have been listed for many months. Tricia has two things going for her concerning getting her new lungs quickly:

> (Projected) High placement on the list
> Common blood type
> Average chest size

The surgery itself is not something I care to describe here, but it usually lasts for several hours and is incredibly delicate and complicated. The average success rate for the surgery and the first year is about 90%, with a drop of about 5-10% each following year. Tricia also has a few things going well for her concerning survival:

> She's young. Most transplant patients are much older than Tricia, which skews that 90% survival rate.
> Other than her lungs, she's in good shape (despite the past few weeks)
> Her CF will not directly affect her new lungs. (this is too complicated for my tiny brain, but) The new lungs will have a different DNA than Tricia's body.

The recovery involves a few days in ICU, a few weeks in the hospital for observation and several weeks of more PT in the Durham area. This could be a minimum of about 8 weeks, but we've known patients who have complications and never make it home. They tell us that Tricia will be walking the day after her surgery (amazing).

So, if everything goes perfectly with both Gwyneth and Tricia, we are looking at being here in Durham until June/July.

Organ Donation is one of my new passions. If you have made the simple decision to be an organ donor, make sure that you tell your drivers license and your family of your desire. If you're not an organ donor, please, take a few minutes to learn how easy it is to become one.

The only reason that people die while on a transplant list is because there is not enough supply to meet the demand.

Thanks!

Nate

Just in Case You Can't Break the Addiction...

Here are a few posts that I would love for you to visit if you missed them, or revisit again:

If you want to help us in any way.

If you know Tricia and want to leave her a message for me to read to her when she wakes (or want to just read the comments and learn more about her).

If you want to leave a comment but are computer illiterate.

If you would like to pray for a little boy with CF named Dameron (I will lvoe you forever if you do).

If you want to read our perspective from several months ago.

Also, I'm sure that the rest of our blogging family may have something to say today (Andy and Megan already have):

Rick
Andy
Megan
Janet

Nate

I'm a Daddy!

1lb 6oz

She is stable, and I'm waiting to go down to NICU to see her. The delivery doc brought us a picture...she has hair (go figure with the two of us). That's all I know.

Tricia is sleeping in ICU. The next 24 hours will be critical for Tricia. She's doing well on the vent, but until she's awake, we won't know fully what the future looks like. I spent 5 minutes with her before they kicked me out to do some things.

I'll give more details later, but 75 people in the OR tells you something of the miracle that today has been so far. Lots of tears, both of fear and of joy.

Your prayers over the next few days will be the most treasured.

Nate

Now

Tricia is in the OR now. They said, if all goes well, it will be a 15 minute surgery, and then they'll watch her for about 45 minutes. I'm sure, at this moment, they're still preparing her, so it may be a few hours before we know anything.

Nate

The People Waiting

In the meantime, check out My Dad's Blog and My Uncle's Blog as they're updating today about this experience from their own personal perspectives.

Nate