Goodbye Sweet Eva

Our beautiful friend, Eva Markvoort passed away this morning.


I first came to know of Eva just a little over 2 years ago and have since blogged several times about her. She received her double lung transplant not too long before Tricia received hers. Tricia and I have been able to spend the past few years, thanks to the internet, getting to know Eva as a friend. It has been amazing to watch her truly take advantage of her second chance at life...I've never known anyone as uniquely open about her joy for life as Eva.

It's also been an honor to be able to encourage and pray for Eva and her family over the past several months as she has continued to live as joyfully as possible while dealing with chronic rejection and hoping for another transplant. I can't imagine the journey they've had the past few months, and am full of mixed emotions right now, hurting for her family and very thankful that Eva is no longer suffering. Although she did not received her transplant, she does have new lungs today.

Goodbye, sweet, Eva! We will miss your gritty poems and your crazy photos and your silly videos. You were so kind to us, and we are very thankful to have called you friend. We love you!

Nate, Tricia & Gwyneth Rose

We love you too, Eva...

Please, Please, Please. With tears in my eyes, I ask you to pray for my friend Eva Markvoort today. Just a warning that the following video is very real and has some very serious content.

Answers

Some really great questions this time, and we've had fun answering all of them!

Because a lot of questions were about and for Tricia, I thought I'd let her answer those...

How about a "Tricia" update? How are her lungs? Is she feeling healthy and able to do everything she wants to do? What about her other CF-related issues? Is life after transplant better, worse or exactly what she thought it would be?

My lungs are doing well. They are not at %100 function, which still make exercise difficult for me, but I can't complain. The only thing I feel restricted by is full cardio workouts. I have other CF related issues and transplant related issues, but I don't feel like discussing those. Life post-transplant is definitely easier than pre-transplant and I wouldn't change it for anything.

What's the one thing you'd say to the parent of a child with CF?

Be consistent, encouraging, creative and show discipline when needed. I needed to be shown discipline a lot during my high school years (to keep on my meds and treatments). Be involved with the CF community and don't limit your child if possible. Allow them to dream and achieve all their dreams!

What's a typical day in your families life? Is Gwyneth a good sleeper? What do the girls do during the cold season (when they have to hibernate away from germs) to keep busy and entertained?

A typical day-there is none. Many days involve medical appointments, visiting friends, family, errands, going to the YMCA or park, traveling to church to visit papa or one of his games he is refereeing. Spending our evenings together for dinner, then bath, play, reading time and bed. During the MLB games, we visit G and G at night since we don't have cable.

What are your favorite parts about motherhood? What activities are her bonding times with Gwyneth?

I love all parts of motherhood except when Gwyn is sick. It's nice relating to both my mom and sisters during this season in life and sharing mothering experiences. It is also nice spending play dates with my friends who are also mothers.

I wondered how you were taught about Jesus when you were younger, and how you share your faith with Gwyneth?

Look at My Blog regarding the first question. Right now, just sharing my life and being an example. Using books like the Jesus Bible and some other stories that share values and character traits we hold dear. Lastly, spending time with friends and family who share the same Christian values we share.

Personality wise, who is Gwynethth more like?
I don't know yet. She is strong willed, silly, and very loving. I guess a lot like her papa now.

How do you manage anxiety about the future?

I trust in God daily and don't worry about the future. My personality tends to worry about daily, insignificant things.


The rest of the answers are from me (Nate).

I just want to know how that sweet baby girl of yours got to be so cute?!

I think that's a pretty self-explanatory question, considering most people say she looks "just like her papa".

I'd love a big Gwyneth update! How is she growing and what milestones is she hitting? Do you have any long-term concerns for her?

Gwyneth has actually been growing very little for the past few months. She has been plateaued around 18-19 lbs since July. When you see her in person, you immediately notice that she is very long and slender for a baby of her general weight, which means she doesn't have any of the usual fat rolls of a baby her size. She has three cousins who are all about a year younger than her and about her same weight right now, but they're all a few inches shorter than Gwyneth and much "chubbier".

Recently, she's learned to say "up" when she wants to be picked up (which gives her two words now). She's also recently learned to make a G sound, which sometimes sounds like a K instead. She's crawling all over the place, although her crawl is a little awkward looking (have you ever seen a Komodo Dragon walk?). She is scooting really well along our furniture, and she'll do a pull-up (with her feet coming off the ground) hanging from the kitchen table if you let her. Her upper body is very strong and pretty well coordinated, and we're hoping her legs catch up soon. And, she's learned how to blow kisses with her hand.

We don't have any long-term concerns for her.

Does Gwyneth still drink any kind of formula or is she on regular milk now, and baby food/real food?

Gwyneth still drinks formula to give her as many calories as possible. She's a picky eater, but we think that's in large part because of her other developmental issues. She's just now learning to feed herself with a spoon and fork, and we try to feed her just about anything we want to along with the formula. She's not big into baby food.

How do you/will you handle Halloween as Christian parents? Do you have any Scripture-based evidence to avoid Halloween, or do you see it as harmless fun?

We view Halloween as a neutral thing. Some people use it for evil, others for good, and some just like to have harmless, but pointless fun with it. Our church uses this holiday to serve our community by offering Trunk or Treat every Halloween night (click the link to learn more). We offer a safe and family friendly opportunity for people in our community to do traditional trick or treating with a twist. We offer carnival games, cotton candy, hotdogs, drinks, popcorn, giant moon bounces, and tons of other stuff, all for free. This year, we're expecting over 2500 people to come through our event, most of whom do not attend church anywhere and do not have a relationship with God. It's so much more fun and eternally impacting than barricading ourselves in our home out of fear, or even simply going out trick or treating just to serve ourselves. Anyone with children under 18 who is reading this is welcome to come!

What are your favorite parts about fatherhood and what do your bonding times with Gwyneth entail?

I love watching Gwyneth explore and learn new things. Since her growth and development has been so slow, we've had more time than most parents to enjoy having a small, dependent baby, and every new thing she learns to do is that much more exciting. I love her kisses and her smiles and laughs. I love caring for her...I hog most of her nightly baths, and enjoy fixing her bottles and medications (much the same way I enjoy caring for Tricia's medical needs). And, I love coming home for lunch and after work to see her smile and reach up to have me to take her in my arms. I also enjoy any opportunity that I get to spend with her by myself out in public...especially now that she's wearing her glasses...she attracts a lot of "what a cute baby" attention. :)

Also, how'd you pick you G's glasses?

Tricia picked out her glasses, and let me tell you, there is apparently an incredibly small market for tiny glasses because it took her forever to find what she was looking for. The brand is Miraflex. They're incredibly flexible and very difficult to break. We bought a size that fit her now but also has lots of room to grow. We've also ordered another pair from a different manufacturer, which we're hoping will arrive soon.

How do they work out the prescription for Gwyneth's glasses?

I can't tell you exactly how it works, but with some eye drops, prisms and other equipment, the doctor can determine her prescription. I can tell you that she has some fairly thick lenses.

Personality wise, who is Gwyneth more like?

We see a lot of both of us in her. She's definitely goofy like me, and very sweet like her mother. She's a sleepy-head and a talker like Tricia, and nosy and intense like me.

I was just wondering if Gwyneth is in early intervention?

Gwyneth sees an occupational therapist and a physical therapist once a week for an hour each. She also sees a speech therapist once every two weeks for an hour. Based on our experience, we'd encourage any family with a child who is qualified to receive early intervention to take advantage of it.

I wondered how you and Tricia were taught about Jesus when you were younger, and how you share your faith with Gwyneth?

We were taught, and we're teaching Gwyneth, that our faith in the living God is about life, about a moment by moment relationship with Him and those around us. Every decision we make comes out of our world view, and we hope that world view comes out of our relationship with God and our trust in the sacrifice of Jesus Christ. Like our parents before us, neither are we perfect...but, we're continually learning about loving God and loving others, and we hope that, as Gwyneth grows older, she'll hear and see our faith in action in the big and small ways in the things we say and do. We hope that our relationships with our family and friends will reflect God's love for Gwyneth, and that those same people will also help us to show Gwyneth what an authentic relationship with God is all about.

Although we hope to be Gwyneth's most effective teachers for many years, we also believe that more is caught than taught. Practically speaking, Tricia has already begun to spend time reading from a children's Bible with Gwyneth, we are teaching her about God's Word through songs and stories, and we involve her, as much as she can be involved, in our family prayer. We also bring Gwyneth along in as much of our adult lives as possible...she sees us serving in ministry at church, she goes with us to serve our community, she is present at our "small group", she comes to watch our band practice on Thursday nights, etc.

Do you have any favorite high calorie foods or recipes that I could use?

Ice cream.

Does G still use oxygen?

No...she hasn't been on oxygen for about a year now.

How is your gorgeous raven haired niece doing? Do her and your blessed white rose have fun playing together?

Evaine is doing very well. She's becoming very aware of her surroundings and is beginning to sit up on her own. She and Gwyneth get to spend time together each week, and it won't be long before they're both playing together all over the place.


I wondered how Jeff was getting on?

My brother-in-law is doing very well, and, in fact, he just received a clean bill of health this past week as he continues to remain in full remission. We're very happy for him and his family!

I wondered if you have noticed a big difference in the quality of sleep that you are now getting since your surgery and are mostly healed from it?

I haven't noticed a "big" difference in the quality of sleep, but I can tell that I'm not nearly as tired during the day. Tricia says I seem to be sleeping much more soundly, and I can tell when I wake up, that I'm often waking up from extended REM, which is something I rarely used to do. I'm planning on having another sleep study in a few months when everything is completely healed up to determine how much of a difference the surgery has made. Like I've said already, the surgery and recovery were much easier than I had expected it to be, and I'd recommend it to anyone who has serious health issues due to large tonsils.

I'm wondering if Tricia is diabetic on top of everything else, or if she needs insulin because of something to do with CF. Also, if she is diabetic, did you find that hospital staff really don't seem to know much at all about diabetes and how to control it?

Tricia is diabetic...she developed gestational diabetes while she was pregnant with Gwyneth (is that redundant?), which has persisted because of the transplant meds she is now on. Many TX patients develop diabetes.

We have had more issues with Tricia's endocrine team at the hospital than any other medical team...it took them forever to figure out how to control her diabetes, and we continue to have issues whenever Tricia is admitted. We know that her case is more complicated than most, because of her health history, her high fat, high caloric diet and her medications, but it can be frustrating. But, compared to the alternative, it's not such a big deal.

How do you balance Tricia and Gwyneth's health issues with having 2 pets? I know you did some serious renovations before you moved in, but have you developed any strategies for winning the battle against pet hair?

Both of our animals shed quite a bit, and along with a few other good reasons, we decided not to have any carpet in our house. All of our new floors are tile and laminate hardwood, and although we can see dirt and hair and other stuff a lot more than if we had carpet, it's also much easier to clean. We have one area rug in the living room, but that's also very easy to clean. We also had a high-tech air filtration system installed, which is a huge help. The doctors informed us that, as long as Tricia isn't constantly rubbing her face in their fur, the dog and cat shouldn't pose any issue for her.

What's the one thing you'd say to the parent of a child with CF?

I'd say, there is a great future for your child if that's what you hope for. There is almost no reason why a child born today with CF, diagnosed early on and given quality treatment can't live a nearly normal and long life. There are a few drugs that are just months away from hitting the market...these drugs have the potential to literally double the life expectancy of a child born today with CF. And, I truly believe that we are getting very close to finding a cure.

Are you guys getting a swine flu vaccine?

No, but we did all get the "normal" flu shot.

What's a typical day in your families life? Is Gwyneth a good sleeper? What do the girls do during the cold season (when they have to hibernate away from germs) to keep busy and entertained? What TV shows do you and Tricia enjoy watching?

A typical day for us involves me getting up around 8am with Gwyneth. I'll spend a few minutes with her before taking her into our room to wake up mommy together. We'll spend some time snuggling in bed, and then get up to eat breakfast, shower, etc. I'm usually at work an hour or two later. The girls will often run errands in the morning before Gwyneth goes down for a nap around noon. I go home pretty often for lunch, and then back to work while Tricia either takes a nap or does some things around the house. Gwyneth usually sleeps for about 2 hours, and then she and Tricia will go out to spend some time with friends, at the park, beach, etc. I'm usually home from work around 5, and we eat supper together. While the weather's nice in the evenings, we take lots of walks, run errands, and spend time around the house reading books and playing with Meka. We always end the day with a bath for Gwyneth, reading a few books together, and singing a good-night song. Gwyneth is usually in bed around 9pm, and she'll usually sleep through the night until 8 the next morning.

During the cold season, we'll spend more time at home than usual, and lots of time hanging out with family and friends. Because Gwyneth is mobile and good at entertaining herself, it's much easier to stay busy.

We actually don't have cable...it's too big of an expense, and we know we'd end up spending way too much time in front of the tv if we could. We do watch a few shows on the internet, and we rent DVD's from time to time (and we'll hang out with friends or family if there's something we really want to watch...like playoff baseball!). Gwyneth watches some Baby Einstein every now and then, but for the most part, we don't spend a lot of time in front of the tv.

What are some Christmas traditions you want to start with Gwyneth? What were your favorite ones? How about Tricia's?

My mom always made a big deal about Christmas...we basically started celebrating the day after Thanksgiving, and growing up, we had too many traditions to count, most of which I would love to continue with Gwyneth. Some of my favorites include picking out a new ornament every year (mine were all nutcrackers and soldiers of some kind), putting up the live tree as early as possible and making a big deal about the decorating (we had a ton of very sentimental ornaments), listening to and singing Christmas songs 24/7, watching movies like "It's A Wonderful Life", "White Christmas" and "A Christmas Carol", opening one gift on Christmas Eve, reading the nativity story from Luke on Christmas morning, and going out to watch a movie on Christmas Day.

What denomination is Nags Head Church? And what do you like most about being a worship leader/pastor?

Nags Head Church is affiliated with the Southern Baptist Convention, although we're about as un-traditionally Southern Baptist as any SBC church. I love investing my life and gifts into the lives of others...I believe that there is no greater calling than to use the resources God has given you to show love to others. It doesn't hurt that I get to rock with an awesome band a few times every week either.

You mentioned on twitter a while ago that your work at NHC was going to be cut back to more "seasonal" work. What are your hours like and how does it affect your family life?

I'm basically working a very part-time job right now...any hours I spend there and any money I make there is deducted from my work time and pay from the church. This gives me more opportunities to be out in the community and gives our church some extra financial help during these difficult economic times. This was a decision that our staff made to help our church family through this season, and it's also giving me some good exercise. It's not affecting my family life at all, except that my hours away from home are moved around a bit during the week.

What is one major thing that you would like to accomplish in the next few months?

Hmmm...I would love to lose at least 20 more lbs. I've lost a total of 30 lbs in the past three months, half of that before my surgery and half since.

Having seen a show on the OBX, I wonder if you talk like them?

Not sure exactly what that means...the OBX is very much a melting pot. Before my generation, there were very few people who we born and raised here...growing up, I only knew of a few people my age who were born here on the beach. My mom is from VA and has a bit of a southern accent...my dad was in a military family and lived in a few different places around the country, so I, and most young people who grew up here, really don't have a heavy accent. You will find some very strange accents if you talk with the older generations who were born and bred in places like Ocracoke and Wanchese, but there are very few of those folks left.

How do you - both of you - manage anxiety about the future?

To be honest, neither of us has much anxiety about the future. Yes, we have our moments, but we believe that our future is secure because of Christ, and that God always wants what is best for us, even if it doesn't appear so at the time. We certainly have a responsibility to make wise and healthy decisions that can affect our future, but none of us really has much control over what tomorrow will bring...so, why worry about it? Any time that we spend worrying about what could happen in the future is time we're stealing from our present. We accept the lot we've been given and the life we've already lived...Tricia's CF and Gwyneth's prematurity are as much a part of who we are as anything else in our lives, and based on the faithfulness of God in our past, to worry about the future would seem silly.

Is there anything specific we could pray for?

If you want to pray with us, we're praying that several things will fall in place very soon that will allow Gwyneth's growth and development to speed up. We're hoping that her glasses, her upcoming eye surgery, her upcoming ear tubes, and some new meds that she is on to help with some digestion issues (which should help with her appetite) will all help to spark her development.

Thanks again for the great questions! Answering them kept me busy this week while my girls were away in NJ. BTW, if you have any good follow-up questions based on this post, I'll be more than happy to try to answer them in the comments section.

Nate & Tricia

Blessed

It hits me often...the understanding of how blessed Tricia and Gwyneth and I are. To have both of my girls alive, even with their lingering medical needs, is simply unexplainable.

I have spent many hours talking with and reading the stories of people who have lost their premature children and their CF/TX loved ones. I try to empathize with their loss and pain, but I know that I can't fully understand where they find themselves.

According to medical science, I should be one of those people, in both categories.

I shouldn't be sharing pictures and stories of the three of us together.

I shouldn't be asking for you to think of my wife and daughter's needs.

I shouldn't be thinking of falling asleep in my wife's arms tonight and waking up to my daughter's laughter tomorrow morning.

According to medical science, we beat the odds...we're lucky.

According to God, I am blessed.

I can't explain to you why we are where we are and not where we were told we should be. And, although I don't fully understand why, I can share with you the blessings that have come out of our journey.

I don't take it for granted. This is why I can't complain, publicly, about our current situation. I have my moments, and my days...I've had my desperate conversations with God and family and friends. But, no matter how hard I try, I can't get passed the fact that I am blessed.

Nate

Reality

It's not something we often talk about between the two of us. It's certainly not something that we usually feel comfortable discussing with even our closest friends and family. It's not even something that comes up in our recent conversations with Tricia's medical team.

But, the reality is, even with the transplant, Tricia is still very sick, and, without a miraculous, unforeseeable medical breakthrough, her life will not extend beyond a handful of years more.

Yes, we do know of transplant patients who have lived well past the 8 year average life-span post double lung transplant, and certainly, a second double lung transplant is, at least, a very narrow possibility. But, those cases are the exception, not the rule.

Reality for us is that Tricia weekly, sometimes daily, deals with an incredible array of physical issues, most of which we choose not to blog or talk publicly about. Relatively speaking (say, compared to a year ago today), Tricia is doing incredibly well, and we are beyond thankful for each day we've been given. The past few months of maintained health have given us more hope than ever that we might be able to enjoy "normal" for a while. She has truly not felt this good in years, and for us to complain about, or even discuss publicly these health issues would be exhausting, depressing, and would not be reflective of the joy and happiness that we sincerely live each day with.

But, the reality is that Tricia's body is and will forever be in a very frail state (those who live with a chronic illness and transplant can relate, I'm sure)...with every fever, every cough, every strange side-effect a bit of worry creeps in, quickly followed by a prayer to hope that it won't be anything major. And, although she is doing so well for Tricia (and much better than many other double TXers at one year out), her bouts with lymphoma, pneumonia and other illnesses this past year have slowed her progress and kept her from doing as well as we had originally hoped for coming out of transplant surgery.

Of course, to maintain a healthy relationship and a healthy grasp of things known as well as things hoped for, the reality of our situation is discussed between us at different levels from time to time...we are grateful that life and death and all the stuff in between is something we have been able to talk about freely since the beginning of our relationship. But, the truth is, it can be difficult to discuss these things with others who know and love us. To talk about it so seriously usually leads to a deep well of emotions, which makes it difficult to talk. To talk about is lightly just seems to lead to confusion and concern...

But, the reality is, we really only see a small piece of true reality. I cannot know what tomorrow may bring, and I am not guaranteed any more time on this earth than Tricia. We make our adventurous plans and dream big just like anyone else, but we also take advantage of every moment together and live for today, believing that God continues to hold our past, present and future in His incomparibly tight and gentle grip.

I never understood what carpe diem was really all about until recently. We have been given an incredible gift...a glimpse of what life could be like without the miracles...and we don't want to go back to the way things were before, taking so much of life, both the "good" and the "bad", for granted.

It is now 4:36am, and I've already been up with a grumpy 18 month old for an hour. My body tells me that I should be sleeping right now, and a few years ago I would have not been too happy about being up at this time of day. But my reality has changed, as has my perspective, and, although I will never perfect it, I am learning, albeit very, very slowly, to find the joy in each and every situation. I wouldn't trade a single, late-night hour with my grumpy daughter for anything...neither would I trade the reality of crawling back into bed with my sleeping wife in a few minutes.

Nate

Bum

I'm feeling like a bum...with all of the stuff happening with Tricia the past few days (did I mention Gwyneth had a fever last night?), I haven't had any time to even think about mother's day, much less do something about it. Fortunately, I've got a few things all ready for Tricia's birthday next week, and I know that Tricia has had gifts waiting for our mothers for several weeks now.

But, I still feel like a bum.

:(

Nate

Longest Night Of My Life

A year ago tonight was the longest night of my life. Tricia went into surgery around 9pm and didn't come out until after 6am the next day...it seemed like much more than 9 hours to me.

Our parents and I stayed awake the entire time, sitting in the NICU waiting room, spending time with Gwyneth. I know from the thousands of comments that night and early morning that many, many people were up with us, praying and hoping and waiting.

I'd love to write something poetic and deep right now, but I really have nothing more to say except, "thank you".

Nate

Home From Surgery

Gwyneth's surgery went very well and was much shorter than expected. From the time we handed her to the nurses beforehand to the time the doctor came out to talk with us afterward was only about 30 minutes. The only hard part on us was letting her go to the nurses beforehand, but even that wasn't as difficult as I imagined it might be.

Although she was a little grumpy about not eating this morning, as long as we kept her engaged she really didn't cause a big fuss. We left home on time, arrived on time, and they came to take her into surgery right on time, which is not something we were expecting (having a lot of hospital/surgical experience). The doctor ended up working on both of her eyes, which we knew was a possibility. The inside half of each eye is very red, and she was very fussy for about the first hour out of surgery (especially when we pulled the large bottle of apple juice out of her mouth).

But, we were in our car by noon, and she slept all the way home and all the way until 4 this afternoon (Tricia and I caught a nap as well when we got home). She downed a big bottle a formula when she woke up, and I just left home to head down to the church for the evening...mommy and baby were talking and playing like normal, although baby is definitely still very groggy.

We've been told not to expect to see a difference in her eyes (the crossing and dipping of her right eye) or behavior for at least a few days, but I can already tell that her two eyes are much more aligned with each other. So, we'll just pray that they stay that way and that she won't need another surgery. All in all, it was a good experience, and, if what we've been told is true, she'll be back to "normal" by tomorrow, although her eyes will remain red for possibly several weeks.

Thank you all for your prayer and encouragement. We both felt very at peace (although very tired) all day, and are very grateful for your support! Check back in later tonight for some very cute pics of tiny Gwyneth in her tiny hospital gown...

Nate

"Good Day"

A man I greatly admire died today.

I hope your next page is glorious...good day, Sir.

Nate

Eye Surgery

We drove to VA for a pre-op consult with Gwyneth's eye doc/surgeon (who is one of the best ever with this kind of thing) this morning. The surgery has been scheduled for March 5, although we won't find out what time until the day before...hopefully it's not too early in the morning.

The 45 minute surgery will be on her right eye and will involve moving a few muscles around and detaching a tendon (that should reattach itself with time). It will be an outpatient surgery, so hopefully we can be home that night. She'll probably have some bruising around the eye and some redness in the eye, and tylenol should help with any discomfort she might feel during the first few days. There is a possibility that the surgery will actually cause her eye to overcompensate (the eye may be pulled too much in the opposite direction) which could lead to a second surgery, but we're praying that the first time will be enough.

Although we're totally cool with everything right now, I'd imagine that Tricia and I might be a little nervous while we sit in the waiting room that day. The dynamics of our situation have changed dramatically over the past year...very little of what took place in the hospital with Gwyneth a year ago caused us much apprehension, but now that we are full-time parents, our feelings and emotions have grown into, perhaps, whatever feelings and emotions "normal" parents might also experience in a similar situation. I'm not sure if I can explain all of that properly, but I'm guessing other preemie parents might know what I'm trying to say (These Posts might help as well).

All of that to say, while we totally believe that God will have Gwyneth right in the middle of His hands that day, her parents would certainly appreciate your thoughts and prayers for her and us as we experience something new and bit scary.

Thanks!

Nate

Incoherent

Life is mysterious and miraculous.

I've caught myself today, as I have been doing often recently, recalling things that were taking place in my life exactly 1 year ago, and today was especially poignant. January 1, 2008 was the most emotional day of my life up to that point.

I didn't write much about my thoughts and emotions of that day, but as our friends and family (and many around the world) gathered by Tricia's bedside to pray for her and the baby, just seven days from Gwyneth's birth, I allowed myself to release a lot of pent-up emotions. Today, I could feel a lot of those emotions again.

A year ago today, I really had no idea what life was going to look like over the next 24 hours, much less the next 7 days. And, if you had asked me to be honest, I probably would have told you that I wasn't very hopeful for the future. As far as I could see, my wife was dying and my daughter was only a dream.

Life is both mysterious and miraculous, and most certainly impossible to predict.

I lay awake last night, as I often do, watching Tricia breathe. I remembered laying awake a year ago, in hotels and hospitals, watching Tricia breathe, incredulous that anyone could survive a few minutes of sleep breathing as she was, literally the shallowest of breath every second, much less an entire night. I remembered watching her entire body tense and relax, tense and relax with each breath.

I woke up this morning after a deep night of uninterrupted dreams to the sound of Gwyneth's coos from her crib. I remembered waking up many times during the night every night a year ago, and, even with the lights on, having to place my hand on Tricia's chest just to be certain that she was still breathing. I remembered waking up each morning, immediately reaching over to feel the warmth of her body.

Normally I'm the one up with Gwyneth in the morning, allowing Tricia the extra sleep she needs and enjoying some time alone with my White Rose before the business of the day begins. But, today, I lay in bed for a few more minutes of sleep as Tricia happily got up and fed Gwyneth breakfast before she brought Gwyneth into our room to wake me up with a slobbery face, toothless smile and a strong headbutt to the nose.

Oh, how things have changed. 1.1.08 was a turning point for me. I believe it was a turning point for Tricia and Gwyneth as well. 1.1.08 was the day that thousands began to learn of our journey, as the handful of those reading our blog up to that point began to spread the word and ask for prayer. Simply amazing.

Life is mysterious and miraculous.

I don't know if anything I've just written makes any sense, but I needed to get some thoughts and things out of my head and onto "paper" before going to bed, so forgive me if this post is incoherent.

Nate

BTW, read my dad's blog for a glimpse into his thoughts about 1.1.08 a year later.

The Latest

Tricia's PET Scan (Monday morning) shows that the chemo has done very little to affect her PTLD, and, in fact, some of the spots in her lungs have grown, and the lymphoma has possibly spread to a lymph node in her chest (outside of her lungs). They are stopping the current R-CHOP treatment, since it is obviously not doing her any good, and performed another biopsy on Tuesday morning.

That is literally all we know at this point. We arrived home late last night. We should hear back from Duke later this week about what the biopsy shows and what they recommend next.

We are very discouraged as we very distinctly recall the cancer doc telling us a few months ago, "If this treatment doesn't work, Tricia is in serious trouble..."

Nate

Feeling Bad

Tricia's not feeling good today...mostly fatigue. She had some blood work done this morning, which made her day at the doc's longer than we expected. After sleeping some during her meds, she has slept most of the rest of the day since she got home around 3:30.

The blood work revealed that Tricia's anemic, mostly due to the chemo. She'll receive a shot tomorrow to help her along with this. The anemia (along with other factors) causes the fatigue, which we've especially noticed the past several days.

And, of course, being a new mother with fatigue leaves Tricia feeling very un-motherly, which leaves me feeling very helpless. I love spending time with Gwyneth, but not when it's because Tricia cannot. We're praying for a better day tomorrow.

Thanks.

Nate

Slow Day

With the excitement of the house earlier this week, today has felt very slow. Tricia wasn't feeling so great this morning, so she slept a few extra hours while Gwyneth and I hung out. I got to work in the early afternoon (so thankful for flexible hours that work with our unpredictable schedule), and Tricia's been home getting some rest and playing with Gwyneth. I'm back home again, and Tricia is in bed...

The wind has been blowing pretty hard off of the ocean for over a week and became really bad the past few days with this nor'easter, which takes away the fun of the cooler September weather. But, the sun was out for much of today, and the winds and rain are mostly gone, so maybe we'll get to enjoy some nice September days after all.

A new movie opening today, "Nights In Rodanthe" was set and shot about an hour south of us. The movie was adapted from a book of the same name by Nicholas Sparks, a NC author who sets all of his novels along the coast of NC (you may have seen "The Notebook", and our personal favorite, "A Walk To Remember"). I'm not going to tell you to go see the movie, but if you do, I hear it gives a pretty accurate portrayal of life on the southern OBX (minus the movie stars). In fact, the pic below was taken just yesterday during our big storm of the house where the movie was filmed.

Read more about this house Here.

We'll be traveling back to Duke in just a few weeks to find out if the chemo is doing what it should to Tricia's lymphoma. We're hoping and praying for the best news possible, and anticipating that, with the last of her treatments in a few months, we'll have most of this difficult medical stuff (minus Gwyneth's continuing meds and appointments and Tricia's normal post-transplant issues) behind us. With the contract to buy the house, we're actually allowing ourselves to believe that our lives might appear and feel as close to "normal" as they ever have in our time together...

Also, Tricia's 6 month transplant anniversary and Gwyneth's 9 month birthday are coming up in the next few weeks, and hopefully we can spare a day to find someway to celebrate! We've been shooting a lot of video the past few days, trying to get some of Gwyneth's new tricks and discoveries on camera...I'll try to share some of it with you soon.

Anyway, that's about all I have to share about today.

Thanks!

Nate

Life Just Got Complicated

Yeah...you might be thinking that our life was already complicated. Well, not to us...at least not until now...

Tricia's lymphoma in her lungs did not respond well to the meds over the past five weeks. In fact, some of the growths are bigger, and there are a few new growths. Only two of the growths are smaller, and none have gone away. That alone was pretty disappointing.

Next, they've decided to keep Tricia overnight until they can come up with a new game plan. Another disappointment (Gwyneth and I will be partying at the hotel by ourselves tonight).

This evening, we met with the oncologist (cancer doctor), who explained that the next step is R plus CHOP. I've been explaining to you that the chemo Tricia had been receiving was not the heavy duty stuff...CHOP is. CHOP is the stuff that you hear about that comes with a lot of potential side affects...nausea, severe headaches, risk of leukemia, hair loss, etc.

Tricia will receive her first treatment tomorrow. If all goes well, she should be released on Thursday (we were planning on heading home Thursday anyway). She'll received her second treatment in three weeks here at Duke. A few weeks after that second treatment, they'll reevaluate to determine if the cancer is responding as hoped for. If so, she'll receive four additional treatments every three weeks, for a total of six over the next eighteen weeks.

If, after the first two treatments, her cancer is not responding, Tricia is in serious trouble.

Each treatment lasts several hours, and immediate side affects include the nausea, headaches, etc. Because of Tricia's other current health issues and medications (which I'll discuss at a later time), this entire process is a lot trickier than it normally would be if she was only facing cancer (not to diminish anyone who is "only" facing cancer...that alone is nothing to laugh at).

Needless to say, we're both very bummed tonight. Tomorrow is a new day, and I'm sure we'll be more optimistic, but tonight we're very discouraged. We continue to trust God, believing that, regardless of what lies ahead over the next few months, He is in control and knows what is best for us, but we're feeling rather beat up.

Blessed be the Lord
day after day he carries us along.
He's our Savior, our God, oh yes!
He's God-for-us,
He's God-who-saves-us.
Lord God knows all
death's ins and outs.

Psalm 68:19, 20 (The Message)

Nate

BTW...Gwyneth had an appointment today and has another tomorrow...I'll update you on her status later tomorrow. Thanks.

Confessions of a Preemie Parent (Part 2)

(Part 1)

One of the most difficult things about being a preemie parent is the absence/delay of all of the big milestones of the first few days and weeks. It was nearly a week before I could touch Gwyneth without gloves on, nearly a month before I held her, three months before I could feed her from a bottle, etc. The NICU smells nothing like what most people think a new baby should smell like. Not to mention all of the developmental milestones. In fact, neither Tricia nor I were even really there for Gwyneth's birth. I was in a waiting room, and Tricia was sedated.

And, I can't even begin to imagine how it was for Tricia. That was actually one of the greatest frustrations for me during those months in the hospital. Because of Tricia's own health, she behaved and reacted to many things differently than I would have expected. Without going into great detail, because Tricia was so sick, and because she had so much less contact with Gwyneth than I did, it was even harder for her to connect with the idea and emotions of having a daughter. Gwyneth was nearly a month old by the time she even saw her, and nearly two months old before she could hold her. Even as her husband, it was hard, and really impossible at times, for me to understand what she was going through.

And, it became even more difficult when people would comment about their expectations of our thoughts and behaviors. "Tricia must have been so excited about...", or "You both must be so happy about..." became hard for me to hear and read, and made Tricia actually feel guilty if she heard/read them. Well meaning people thought they understood, but really had no idea. When we had guests visit at the hospital, I would often have to ask them, before going into Tricia's room, to not talk about the baby and the pregnancy unless Tricia brought it up. After the first few weeks (after Gwyneth's birth), I banned Tricia from reading comments until I could censor them, and I can't tell you how many of those comments I deleted, not because they were mean or insensitive, but simply because we couldn't emotionally deal with reading them.

We knew that, under normal circumstances, we would be acting and thinking the way most people would have expected. We would feel as we should the first time we both saw her, held her, took her home... But, we obviously weren't under normal circumstances, and it seemed that the only people who really understood that part of the picture were our family/friends and other families who have been through similar experiences.

I had to continually tell myself, "If I can't even understand some of the things Tricia is dealing with, I can't expect people to understand what I'm going through." And, I think that's one of the most difficult parts of these kinds of journeys...the knowledge that, while you're certainly not alone, most people just can't understand.

But, through the blog, so many have encouraged us by sharing their premature birth stories with us. And, that, in turn, is one of the primary reasons we have chosen to share our story. Most likely, somebody, if not several people reading these words right now will become parents of a premature baby at some point in the future. Being a preemie parent brings a lot of unnatural feelings and emotions. We knew very little about premature babies or what to expect as preemie parents before this experience, but we've learned a lot. And, we hope, that we can help others in the same way that we have been helped.

Thanks.

Nate

Confessions of a Preemie Parent (Part 1)

I've been meaning to write these posts for a while. I have a feeling they will shed some light on a lot of the smaller details of our story over the past several months. Through the wrong perspective, what you're about to read might come across as something of a sob story, but that is not my intention. I simply want to give you a clearer picture of what early life as a preemie parent feels, sounds, looks like so that you might better understand our story.

Of course, every premature experience is different, and from what I can gather, because of several factors, our experience was different in many ways from most. But, my guess is, most parents of former preemies will be familiar with a lot of what I'm about to tell you.

Having a premature baby, especially a micro-preemie is unlike any other new-parent experience. There is no way that I can fully describe to you so that you could completely understand, and there's certainly no way for anyone to prepare you for such an experience.

With a normal, healthy, full-term birth (in the US), usually the mother is holding her baby within seconds of delivery, the father is not too far behind, and both mom and child are home together within a few days. It used to be that the baby was taken to a nursery and kept apart from the parents for much of the first few days, but now most newborns are allowed to be kept in the same hospital room with both parents until they are released to go home. This, as they say, is how God created everything to work in a perfect world.

Most people who have never experienced being parents/family of a premature baby are still able to recognize and even empathize with the feelings of fear and frustration involving an extended stay of a newborn child in a hospital. Certainly, most parents can especially imagine what it might feel like to have a critically ill baby and to not be able to take your newborn home within the first few days.

What most people are unable to relate to, however, is the stunted sense of bonding with your newborn that comes with ICU's, incubators, and fragile bodies. For me, and even more so for Tricia, the feeling and realization that, "this is OUR baby girl" has been a very slow but certain process.

Because I have never experienced a normal, healthy pregnancy and birth, I can't really compare our experience. But, from what I have been told, the bonding process, while a lifetime in the making for any parent/child, is usually fast and secure when you're able to hold, feed, clothe, etc. your newborn within days, if not hours of birth.

My first experience with my new daughter was spent in a small, very warm and muggy ICU room. To get to the room, I needed to check in at the front desk in the waiting room. The nurse in the back had to give her OK. I had to wash my arms from the elbows down, making sure I wasn't wearing any jewelery on my hands and wrists. I had to put a blue, cotton gown on. I had to be sure that I turned my cell phone off. Over the next 4+ months, I had to do all of this every time, before even entering the NICU.

Once I arrived in the hallway outside of the room where Gwyneth spent her first week, I had to exchange my blue gown for a bright, yellow gown. I washed my hands again before putting on a pair of gloves, all the while trying to stay out of the way of the nurse (who was very friendly and capable) I had just met.

My first view of Gwyneth was, of course, through the glass of her incubator. She was already hooked up to what seemed like a hundred different wires and tubes. As I've mentioned before, the wires and tubes didn't bother me as it was something I was used to seeing with Tricia, but it is still an abnormal experience for any new parent. The ultraviolet light was on, and she had a small, black mask over her eyes She was lying on a blanket, naked except for the preemie diaper which was easily two times too big for her, very wrinkly and very red. Several machines were beeping, keeping close track of every vital sign imaginable.

The nurse was busy attending to all of the tubes and wires, changing a diaper and watching the monitors closely. The incubator had to be kept very warm and very humid, making it difficult to get a good view of Gwyneth through the condensation on the inside of the glass.

The only contact I was allowed those first few days was to gently touch her with my gloved hands.

All of these things basically left me with a feeling of detachment. I knew in my head that this was my daughter, but without being able to touch and hold her and do all of the other things that I would have expected under normal circumstances, it was hard to have that same knowledge in my heart. It almost felt as if I was simply looking at somebody else's baby, or even looking at a strange animal through a pet-store window. There was certainly the joy and pride of being a father, but it was very subdued...not so much because of her or her mother's health, but because I simply could not do the fatherly things that my natural instincts were telling me I should be doing.

The only thing that I could really do that felt semi-normal was to take a lot of pictures. Here is the video I posted at the end of that first day.

("Miracle" by the Foo Fighters)

I'll post more about this later. For now, if you want to get a better idea of what those first few days were like, go back and read some of my posts from early January.

Thanks.

Nate

Negative

The results came back late this evening, and Tricia does have Post-Transplant Lymphoma. We'll be talking with the oncologists tomorrow to learn more and what the plan for treatment is.

Tricia has a few things going for her:

1) They've caught it early, which is always a good thing.

2) This is a very treatable/beatable form of cancer, perhaps even forgoing aggressive forms of chemo and other treatments.

3) There are still no signs of rejection, which makes treatment very optimistic (I'll explain more later).

4) When you've dealt with an incurable, life-shortening disease your whole life, as well as other things like diabetes and organ transplantation, cancer just doesn't seem like such a big deal as it might if Tricia were perfectly healthy otherwise. I don't say this to be flippant of cancer at all, as we know the possible severity of cancer and have friends and family who are dealing with cancer right now, a few who are dealing with serious lymphoma. But, neither Tricia or I are worried or scared about this. The doctors seem very optimistic, and, considering all Tricia has been through and still has to go through, this feels like something that God has prepared us for. We're just happy to know what it is so that we can get on with it.

Thank you for your continued prayers. To be honest, our biggest concern right now is getting Tricia out of the hospital and getting us all home ASAP. We're praying that the immediate plan does not involve more time in the hospital, especially considering that Tricia's entire family has a week of vacation planned next week on the OBX...something that Tricia has had her heart set on for nearly a year.

We'll let you know more when we can.

Thanks.

Nate

Father's Day Repost

I thought I'd repost this video, as it was my greatest father experience to date.

("Safe And Sound" by Matthew West)

Watch all of the CFHusband videos Here!

Nate

Strike Two

They were able to do a biopsy during the bronch, but it looks like the samples they pulled are useless, so they can't yet determine if it is cancer or something else. This means that Tricia will be scheduled for a surgical biopsy, hopefully no later than the first of next week.

This also means that she's basically in the hospital for literally no reason until then, except, to be discharged, even if we were to stay in Durham, means probably pushing a surgery date further back, which isn't the best option. All they'll do over the next few days is check her vitals and give her her normal meds, which is what we do at home. She won't even have an IV.

All that to say, we're both very bummed. Being in Durham, we've discovered, is incredibly easier and more enjoyable when we're all at "home".

Thanks again for your thoughts and prayers...we'll continue waiting to see why God has us here.

Nate