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

Q&A

I haven't done a Q&A in a long time...I figure this might be a good time to do it while everything is relatively calm in our lives, especially considering that lots of people have been asking lots of questions recently.

I'll keep this post open until 3pm on Thursday, and then get my answers back to you ASAP! If you think you're question may have already been asked, check out the other Q&A posts I've done in the past.

Nate

Answers (At Last!)

> Tricia has not contacted her donor's family yet. The transplant team suggests you wait about a year before writing the initial letter, so hopefully it will be something that we do soon. Depending on the response (or lack of), we may or may not share anything with the public about our possible correspondence with the donor's family.

> Tricia worked several jobs during her teen and young adult years prior to last year...she is now a full-time mommy.

> Yes, I finished "The Story Of Us" a LONG time ago...

> Tricia knows very little about her biological family, mostly by choice, and all of which we'll keep private. She has never struggled much with knowing she was adopted (which took place when she was very young).

> Janet...you can come stay if you can figure out how to get to the futon thought all of the boxes in the guest bedroom.

> Megan...your yellow ae sweatshirt is in our living room.

> Here is the meaning behind Gwyneth's name. We did have a boy name...

> The biggest day-to-day struggle we have as a family post-transplant is trying to find "normal". Being in our own home is helping, but it's difficult to have a set schedule and routine as Tricia's health needs are always changing...from a bad night's sleep to a side-affect caused by a med to the last minuted visits to Duke, it's very difficult to know with any amount of certainty what we're doing from one day to the next.

> Cookies are my weakness (along with ice cream)...it's hard to say what is my favorite, but chocolate chip might be it.

> We both do a lot of the cooking, although Tricia is doing more now that she has more energy and her own home. I cook a lot of breakfast and a lot on the grill.

> We don't watch American Idol...but, we're not watching much of anything on the tv right now because we don't have cable. We do watch a few shows via the internet.

> In the mornings before Tricia is awake, Gwyneth and I spend time waking up together, smiling at each other, and lots of book reading...she loves books (something she definitely gets from her mother).

> The thing I enjoy most about my job at NHC is spending time with people, especially leading worship (and, I actually work for everyone who is a member of my church, not just one person).

> This is my favorite song at the moment.

> When I was younger I wanted to be a baseball player. Tricia wanted to work with animals.

> "I would love to know how you manage to do everything- Gwyneth, Tricia, Work, Laundry, Moving, Blogging, Photography, Dinner, Cuddles, Decorating, Church? Do you ever ever sleep?" Yes, I sleep...not quite as much as I'd like to, but that's mostly my choice. Tricia is doing a lot more now that she's feeling much better, so my life isn't nearly as busy and full as it might appear to be.

> Tricia likes to think that she's a crafty person, and although she's tried her hand at several things, she just doesn't have the personality to really invest a lot of time into one single thing...she's the type who likes to do a little bit of everything, try everything once.

> Tricia is enjoying life as much as she possibly can. She is still a first time mother, experiencing much of what all other first time mothers experience, including the frustrations and stress. She still deals with medical issues on a constant basis...beside her transplant recovery, diabetes, CF-related digestive issues, etc., she also has had several minor medical issues, most of which we don't blog about for various reasons. She has a lot of trouble sleeping, at least 50% of the time...the cancer slowed her transplant recovery for a few different reasons... She'll never be able to live knowing that all of her medical treatments and procedures are behind her.

> I've asked Tricia to write her own blog post about life with her new lungs, post-cancer, etc. as many of you have asked about that...I'll let you know when she does that (soon).

> We do get recognized in public, almost always around Durham (never at home, except for people visiting our church). The first few times were a little strange, but now we're used to it, although it's not like it happens all the time. It seems like everyone who we come into contact with on a regular basis (staff and other CF/transplant patients) at Duke follows the blog and keeps up with the news stories, which is nice because we feel like many of the medical personnel are our friends and they really care for Tricia and Gwyneth beyond what is expected.

> I can't answer the question about "what if" concerning being a CF carrier...I can only tell you that, if our situation had been different, we would have probably thought differently about it.

> We are still very selective about where Tricia and Gwyneth go, especially during the winter. Gwyneth has been getting her RSV Shots. Hopefully when the weather warms and most of the germs go into hybernation, Gwyneth will be big and old enough to do more and hang out with whomever and where she wants to. As I've explained before, the immunosupressant drugs are typically reduced after the first year, which means a lower risk of catching a bug from others.

> I have a few "special" songs I sing to Gwyneth, but mostly I make up songs...there are a lot of fun things you can rhyme with "Rose".

> Plastic.

> At this point, we're not actively pursuing adoption, but we hope it will be an option in the future should we decide to grow our family. Right now, we're simply trying to stay healthy and enjoy each other as much as possible.

> This is "our song". Actually, most of our wedding ceremony music was courtesy of Coldplay.

> Vacation...that is something we're currently making plans for...stayed tuned...

> I do have friends who do not share our faith...I interact with them about the same way I do with anyone else. Since our church actually exists for people who don't go to church, they would be totally welcome.

> "Do you have topics that are 'off limits' or that you naturally gravitate away from when you write on your blog?" I thought this was the most interesting question...mostly because, I'm not really sure how you're wanting me to answer....hmmmm....

> My mom's hand healed up very well...it's not perfect, but nearly.

> Jeff is doing very well and is in remission...he and his family are enjoying their crazy life, back to "normal"! We're very thankful for the support they have received.

> Actually, I call Tricia "Patty Sue" and everyone else calls her "Tricia" (except for the receptionists at Duke, who call her "Patricia").

> And, of course, the big questions concerning Gwyneth development. I'll give you a short answer now, and then post a series of videos to actually show you how well she is doing.

Gwyneth has been assessed to be at about a 5-6 month old level, developmentally/motor skills, although, she has recently been making big strides and hitting some key milestones. We are not worried or concerned...as we have shared before, we are simply amazed and thankful that she is even here with us now, and we will celebrate every milestone like any normal parent and will not be scared about her future. To be focused on the unknowns of the future is to miss out on the blessings of the present. We'll enjoy her little, dependent sweetness for as long as we can!

Of course, some of her doctors are concerned, as she is a little behind even as a micro-preemie...but, then, some of her doctors aren't concerned. She has not shown any signs of long-term complications other than what I have previously shared. She has been working with a couple of therapists (actually, we are working with them as they show us ways to help her along) and we are seeing great progress. In reality, her poor eyesight is possibly a big reason why she is progressing slowly...she is very intelligent, very vocal, etc. but motor skills are very closely related to vision.

We do tend to keep Gwyneth's developmental issues more private than other topics we more openly discuss...because: 1) a lot of what we might share would be misunderstood (see This Post and comments for a wonderful example), and 2) someday, Gwyneth is might read all of this, and we need to be sensitive now to her feelings then.

> You can find answers to most of your questions about anything else I may have already covered on this blog by using the cool search bar at the top left-hand corner of my blog (see first pic below). For example...I typed in "life expectancy" and found the answers to a few of your questions via These Results. I've also been meticulous about labeling every post, and you can use the labels feature (see second pic below)...I clicked on the "transplant" label and found the answers to a few of your questions via These Results.



Thanks! It's always fun to see what kinds of questions people ask, and I enjoy taking the time to answer.

Nate

(Bump) Q&A

I thought I'd bump this and open the comments up one more time for our anonymous friends...I've already got A's to the Q's, but don't mind waiting a few more days if there are any other good Q's.

It's been a long time since I've done a Q&A, and since we've had some major events take place since that last one, I figured we're about due.

I'll answer any question about the stuff on our blog that I am able and willing to answer and that I haven't already answered before like 35 times. I'd recommend that, before you ask a question, you use the "labels" feature over on the right of your screen, or look at the previous Q&A's to find out if your question has already been answered. I'll leave the comments open for several days to make sure everyone gets their questions in.

And, before you ask, YES, I'm going to post Gwyneth's 1 Year Birthday Video whenever I can find some time to finish putting it together...

Thanks!

Nate

Answers

> House hunting is going... Still looking. Still waiting for the right house, right deal to come along. It's hard to find time to look with Tricia's health being up and down, and the summer being such a busy time for us, but hopefully we'll have some more time now that the summer is over.

> I choose which organizations to support based on our life situations. CFF, LLS and March of Dimes are obvious choices. Because we have more history with and knowledge of CFF, we tend to focus most of our time and energy on raising financial support for this organization.

> Yes, my faith wavers all the time, just like anyone else, and I've tried my best to maintain a sense of normalcy with my posts, hoping that nobody would think of me or our families as super-human. You can read more about that Here.

> Gwyneth is being fed formula along with a simple supplement of lipids according to the prescription of her docs. This is all she eats for the time being.

> Because of the Lymphoma, we haven't spent as much time focused on other transplant issues surrounding Tricia's new lungs. So far, there have been no signs of rejection, which is great. Her numbers (FEV1, PFT's) are not as high as they could be, but she is certainly in a much better place than she has been for several years.

> Gwyneth won't be eating solids for a while yet, maybe several more months.

> There are too many good places to eat on the OBX to name. I'll put a list together of some of our favorites, but as long as it's local and has been around for more than a few years, you probably can't go wrong. The trick to eating her locally is picking a day/time when the restaurant isn't going to be packed.

> Tricia is able to care for Gwyneth on her own, as much as any other first-time mom is able to (meaning, she does appreciate when I'm home and can give her a break, and she spends a lot of time with other family). The only times she is really unable to do much are the few days every three weeks when her chemo is causing major side effects.

> Gwyneth is about 4 months old, according to her adjusted age. But, we like to tell people how old she is from birth (almost 8 months now), adding that she was born premature (because everyone thinks she's still a newborn because of her size).

> We're still avoiding large crowds as much as possible, trying not to come into contact will many people in general, and keeping our distance when people are sick. Fortunately, there are fewer risks during the summer. With the fall and winter coming up, we will have to take more precautions, so we're taking advantage of doing some things now that we know we won't be able to do later. You can read more about how we view risks Here.

> We have bought a wig for Tricia (for those who may need one at some point, your insurance may cover the cost), and she wears it at times when she's out depending on what she's doing.

> Chemo affects different people in different ways. Tricia lost her hair after the first round, while other lose their hair after a few rounds, and other don't lose it at all.

> I completed the "Story of Us" series with This Post...

> Gwyneth has her own room with her own crib. Maybe I'll give you a tour of her room at some point.

> You can find answers to most of you photography questions on my Photography Blog.

> I don't view the blogs of everyone who comments. I do view blogs when people ask me to.

> Read This if you want to give us something.

If I didn't answer your question, it's because I've probably already answered it at some point. Use the search bar at the top left of your screen, or the labels on the right to find out more about our life.

Thanks!

Nate

Q&A

I know that lots of people have questions for us...I haven't done a good Q&A in a while, so here's your chance to ask.

I'll answer any question about the stuff on our blog that I am able and willing to answer and that I haven't already answered before like 47 times. I'd recommend that you first use the "labels" feature over on the right of your screen, or look at all of the previous Q&A's. I'll close the comments under this post on Friday morning.

Just to make it easy for you, Gwyneth is still on oxygen, but we take it off at times for several reasons, which is why some pictures show the cannula and others don't. I promise that you won't be able to miss my post on the day we're told she no longer needs the O2.

Thanks!

Nate

Answers

Wow! You people really know how to ask some questions.

There were a lot of the same questions asked several times, which makes it easier, and a ton of questions that I've already answered...if you asked a generic question about CF or organ donation/transplantation that I either don't answer here or only give a quick answer to, it means I've already answered it and you can very easily find a more detailed answer by using my "labels" feature over there on the right of your screen (start with "CF", "Organ Donation" and "Transplant"), by visiting CFF.org and DonateLife.net or by googling your question.

I'd love to answer every CF/organ donation/transplantation question in detail every time they're asked, but I just don't have the time.

To make it easier, I split these up into categories.

Organ Donation/Transplantation
> A second double lung transplant is an option for some, but hopefully we won't be considering that for many years to come.
> Tricia's new lungs will never have CF, although the rest of her body always will.
> The potential for rejection will always be a part of Tricia's life with her new lungs. She is on a very high dose of anti-rejection meds that keep her immune system from attacking and rejecting her new lungs. The first year is the biggest risk, and then the drugs should be reduced.

Blog
> I'll probably try to continue the "White Rose Blooming" segments, but maybe only on a monthly basis. Last Tuesday's was the last weekly one (as I've been alluding to every week).
> I will continue blogging when we return to the OBX (which stands for Outer BanX, BTW), but I guarantee it won't be nearly as often as I have been able to the past several months.
> I am going to continue to "Story Of Us" series...I've been waiting for a special day...look for the next segment later this week...
> I used one of the blogspot templates and just modified it to fit my style. I designed the header myself. Look for an all new look coming soon!

Gwyneth
> The docs told us to avoid sick people, lots of direct contact with lots of people and large crowds...which is basically what we do with Tricia.
> My ring has not fit her arm in about 7 weeks. I think I wear an 11/12?
> She is not on an apnea monitor. I know that a lot of parents of preemies have a really hard time sleeping when they bring them home for the first time, being scared that they'll stop breathing or have other issues (which is totally understandable). We figured, if they let her come home with us, and she has been breathing on her own for nearly two months, we don't have much to worry about, and along with the fact that we are already very accustomed to dealing with severe medical issues at home (which is a blessing and a curse), we've been sleeping very well.
> Gwyneth has very long eyelashes, just like her mother...you can see them in many of her pictures.
> Her eyes are doing well. She has another appointment next week to have them checked again. The doc said she might need glasses as she grows older.
> We've been using her real age (4 months) when people ask, but we also follow up by telling them that she's a preemie ('cause we can tell most don't believe us)...not sure why anyone would be touchy about that...
> As I've mentioned several times before, outside of adoption, Gwyneth will be our only child.
> All of Gwyneth's smiles are real (not sure what a not-real smile is...).

Tricia
> Tricia has a test in a few days that will help determine if she'll need the stomach wrap surgery. Her last test showed that she probably won't need it, so we're optimistic. If she does need it, it probably won't be scheduled until later in the summer.
> She blogs at times on Her Website...hopefully she'll be updating soon! (funny side note...she doesn't remember writing her last blog entry...)
> The ring Tricia wears on her right hand is something I gave her on Valentine's day. I "went to Jared". (I also "saved a bunch of money by switching to Geico" a few years ago, but that's a different story)
> Tricia only has about 12 of her 23 days of PT left before she should be released to go home to the OBX.
> She is breathing better and feeling better than she has in a few years, and she's (hopefully) only about half-way to feeling 100% at this point. Check out Alice's Blog (nearly 4 months post-TX) for an idea of what it feels like to be nearly 100% there!
> She plans on a stay at home mom (which by the way, is a $134,000/year job according to Salary.com). She is already strong enough to care for Gwyneth, which she loves to do.

Me
> I haven't been without facial hair for more than a day or two at a time since my junior year of high school.
> Have I ever doubted God? Yes!
> Was I tested for CF? Click Here.

Other
> My mom is doing well. You can read a few updates about her surgery/recovery on My Dad's Blog. Thank you for your prayers and kind thoughts.
> I used a tripod for a few of the pics I took in This Video.
> What do I do for a living and how I am able to spend so much time away from home/work? Click Here.
> As I've mentioned before, Tricia's trust fund is ONLY able to pay for anything involving Tricia's medical needs...it does not cover Gwyneth's medical needs (and we don't need it to) or any other personal expense (please, be careful what you assume).
> Meka the pug is doing great hanging out with Frank, Don and Ginger.
> The font I use for my videos is "Broken Ghost". I'll devote an entire post later on video making...
> I did find what I was looking for when I asked for help with jewelry (Here). Her name is Lisa Leonard and she is seriously good...plus, I read her blog every day because she has a cool family.
> Most of the CFHusband videos you see on this blog can be found at our YouTube Channel (which has been over there on the right of your screen for a few months...)
> I've posted a few photography tips on this blog and on my Photo Blog...I'll be posting more at some point there when I have some time.

I read every comment and every question, and again, if I didn't answer your specific question, it's for a very good reason.

Thanks!

Nate

Q&A

I know that lots of people have questions for us...I haven't done a good Q&A in a while, so here's your chance to ask.

I'll answer any question about the stuff on our blog that I am able and willing to answer and that I haven't already answered before like 47 times. I'd recommend that you first use the "labels" feature over on the right of your screen, or look at all of the previous Q&A's.

Thanks!

Nate

Blog Ads

So, many people have asked me if I've considered hosting blog ads on the CFHusband blog. I did consider it, before Gwyneth was even born, for a few minutes, but decided against it for a few different reasons.

> It doesn't fit with the Purpose Of This Blog. The purpose of this blog has never been to solicit personal financial support for our family. As I've explained before, we'd rather you give to others.

Even if I were to give moneys from blog ads to other people/organizations...

> I think blog ads are usually ugly and distracting. I don't believe I need to say more.

> There aren't many things in this world that I would actually want to advertise for on my blog.

> I sometimes feel used when I visit a blog/website that makes money off of my hit. I don't ever want anyone to feel that way when they visit my blog. Even if nobody did feel that way, I would still feel like I was going against my own character by using blog ads.

And, finally...

> I believe that blessing others is so much more powerful and memorable when you and I do it because we want to, not because we simply visit a blog/website. While we have certainly been blessed by the kindness of others over the past several months, the support of the CFF, organ donation, etc. has been so much bigger and more important. There are literally thousands upon thousands of people who will be affected (now and for years to come) through the ways you have become involved in the things we are passionate about.

Let me be sure to add, if you use ads on your blog/website, more power to you. The above are simply my thoughts and convictions about MY blog, and have nothing to do with you or your site (except that I think they're usually ugly and I might feel used).

Thanks!

Nate

Q&A

I thought I'd answer some questions (as there have been a lot the past few weeks) first. I still have over 2000 comments I've yet to read from right after the transplant (I've already knocked out about 2000 over the past few days), so, as always, if I don't answer your question, it's because I can't, don't want to, already have or just haven't read your question yet (or because I plan on answering it soon in another post).

> Gwyneth is wearing clothes...has been for several weeks. The primary purpose of her clothes is to keep her warm. All of the clothes she wears are just like regular onesies, only a whole lot smaller, and most have been given/sent to us as gifts as we have yet to buy anything for her. Some come from the NICU, but just when she runs out of clean stuff we've brought in. The nurses usually dress her. Mico-preemie clothes are difficult to find except on the internet. Hopefully, someday, we can give what we're receiving away to somebody else in need.

> "Blood gas" is the level of O2 and CO2 in the blood. They take a few blood gases (draw blood to test for the levels) from Tricia every day to make sure her lungs are working the way they're supposed to. They're especially watching for dangerously high levels of CO2.

> Somebody left a comment a few days ago saying that organ donation NEEDS to be outlined in a living will...this is NOT true (at least, not in most states). Yes, a living will is one good way to insure organ donation, but most states (and soon, every state) have new laws that declare that either the drivers license or online registry is all that is needed for the deceased to insure that their organs are donated.

> I take 99% of the pictures you see here on the blog...even the ones of me holding Gwyneth. Thanks to family and nurses for the shots that even my long arms can't handle.

> Gwyneth doesn't have reflux issues. Her crib (as was her incubator) is tilted to help insure that it stays that way.

> As I've mentioned before, I'd prefer not to go into great detail about the transplant surgery....as you can imagine, it's pretty hard-core and I don't want to gross anyone out. You can very easily find lots of reliable (and lots of unreliable) info with a quick google search...I've even been told you can find a video of an actual surgery. I'll give you some of the basics of the surgery in anther post soon.

> To answer This Puzzle (like anyone even remembers), Rosie owned a house in Nyack, NY while I was a student there at Nyack College '99/'00...I could even show you which house it was (actually, could just show you the really tall fence and gate).

Thanks!

Nate

Update and Q&A

Gwyneth Rose did great with the laser eye treatment. She'll have another exam next Tuesday, but it may be two weeks before we really know if the treatment is helping. Even with the best outcome, she will probably have slight problems with her extreme peripheral vision, which should not be an issue unless she wants to be a fighter jet pilot.

Tricia is feeling better, but is getting a little anxious to get out of here. We just got back from spending about 45 minutes outside, which she always looks forward to, and hopefully we'll get to visit with Gwyneth together later today after she (G) has got the sedatives out of her system.

Q&A:

> Currently, my Personal Great Strides Fundraising Total is at $573, which is about 5% of my goal for September 13. It is updated on a regular basis by the CFF. It's quick and easy to donate online if you're looking for a way to help us find a cure for this disease!

> As I explained Here, I give myself about 1.5 haircuts per year. I usually cut my own hair, but get my personal barber (hey Steve!) to cut it if I want something other than the buzz. I did cut hair in college, and can do a good job with more than just the buzz if it's not my own head.

> I have cut Tricia's hair, but just a trim a few times to get rid of her split ends. I'm scared to do much more...if I screw up my hair, I just cut it a little shorter and it's good to go.

And, mad props to my friend anita for catching the nod ("I was hot") to Napoleon Dynamite in my Haircut Post (also, the song is from the Nacho Libre soundtrack).

I'm headed off to the Duke Gardens to get some photos of all of the trees and flowers in full bloom!

Nate

Update and Q&A

Tricia continues to do well. She set a new personal best with 10 laps around her floor yesterday, which is 2/3 of a mile. We're aiming for 1 mile by next week. She's been to see the baby almost every day for the past week, and can hold her as much as she wants.

Gwyneth Rose broke free from contact isolation yesterday with her fourth negative MRSA swab! It was so good to finally be able to touch her skin-to-skin again. She needed a blood transfusion yesterday, which meant the had to skip a feeding and put her back on the nasal cannula, but hopefully she'll be breathing on her own again soon.

She had another eye exam, and she is developing Retinopathy of Prematurity (ROP) which is very common in premature babies her age and size. They will give her another eye exam next Tuesday, and if the condition is worse, they will recommend a laser eye treatment which has good success at correcting the problem.

Q&A

> Gwyneth's hair looks anywhere from bleach blond to red to brown depending on the light and the editing affects I use on the photos. From what I can tell, it's a little darker than it was when she was born.

> Here is a post in which I talk about our own CF screening.

> Several states in the US now require CF screening for all newborns, but many do not. I think it's important for every potential parent to be aware of the possibility of CF. You can find out more about CF screening for newborns Here.

> Neither Gwyneth and nor Tricia are "out of the woods" by any means. Gwyneth still has at least two more months before she'll be cleared to go home, and that's best case scenario, and Tricia's biggest challenge yet is upcoming with the transplant surgery and recovery. They are both in extremely vulnerable conditions, and it would not take much to cause either of the them to have major issues.

> I did "claim" my blog on the blog award website, but it looks like it didn't do anything...

Nate

Update and Q&A

Tricia is doing most excellent. She is walking over a quarter mile everyday, and is not coughing up nearly as much junk from her lungs as she had been (which means she's infection free for the time being).

And, I bought her a new macbook today, because her PC is old and broken (and it is a PC...), so you should be seeing more of her via Facebook and email and her blog.

Gwyneth gained another ounce last night. She continues to breathe incredibly well on her own. She is already outgrowing some of the hats people have made for her. I did not buy her a mac today.

Q&A

> Gwyneth is the first grandchild on my side of the family, and the ninth on Tricia's side.

> I still read every comment, usually on the same day as it is posted.

> The picture of Tricia in my blog header was taken at a friends' wedding just before Tricia and I were married.

> The doctors are not concerned with Gwyneth's weight.

Just in case you've missed any, be sure to watch all of the CFHusband Videos next time you're bored.

Nate

Stuff

Gwyneth Rose continues to do incredibly well on the nasal cannula. Her third MRSA swab came back negative, so hopefully next Monday she'll be on her way out of contact isolation.

Tricia is also doing great. She's been to see the baby several times in the past few days, which is very good for both them and me. She continues to remain infection free.

Q&A

> I've had several questions about my camera. If you'll look back over other Q&A posts, you'll find some more info about my photography "skills". I'm using the Digital Canon Rebel Ti.

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

Q&A

Tricia's still sleeping at 12:20pm, which gives me an opportunity to blog some more...

> If you are interested in getting my permission to play our videos for church events/services, please do so by Emailing Me.

> We've been told that Tricia has been given a score of 55 (out of 100). Apparently, 55 is incredibly high, and places her on the top of the list for patients here at Duke. That's a good thing.

> Parents of preemies (at least, here at Duke) are given the freedom to decide what they're preemie baby is going to eat, assuming that the baby is actually able to eat. The options, as far as I understand them, are basically either the birth mother's milk, donated milk or formula.

> (this varies between different transplant centers) Organ donor recipients are given the option to send a letter/card to the donor's family a year after the surgery (some choose to contact, others don't). Neither side is given any information about the other (race, age, cause of death, reason for need, etc.) until this first contact, and the primary communication is done through the transplant organizations. If the donor's family wants to respond, they can. I've heard of many stories of the donor family having a kind of adoptive relationship with the donor recipient.

> I've created a new label titled "Q/A". Click Here to see every Q&A post and find answers to other questions.

Nate

I've already blogged several times today, so don't miss the stuff below...

A Good Question

So, I was asked a few days ago (by a family who is facing a medical crisis):

1) How are you able to be in Duke with your girls full-time?

The simple answer is that I've been blessed with a job/career that can cater to our current situation.

When I was going through the interview process shortly before taking my current job as a "worship leader" at Nags Head Church almost two years ago, I explained to the pastors (five of them) that something like our current situation at Duke may come up in the near future. I was actually thinking just about transplantation and not about a premature baby. The pastors agreed that the church would support us if this kind of situation arose.

Last summer, after we learned that Tricia was a candidate for a transplant and we began making plans to relocate to Durham, I sat down with our pastors again and shared what the plan was...at that time, we did not yet know that Tricia was pregnant. Our original expectation (pre-pregnancy) was that we would move to Durham in early September, be listed and activated in late September, and probably be transplanted and home by Christmas. I planned on working as much as possible while away (I do a lot just on my computer), and I began preparing the people that I lead in ministry at the church to carry on without me (which they've all done with excellence).

Of course, the expected four month stay has turned into almost six months and will not be completely over for at least another two months. I haven't accomplished nearly as much work as I had originally planned, especially in the past two months, but the church and pastors have been incredibly supportive and flexible. Although all of the details haven't been worked out, I'm sure I've used up all of my vacation and sabbatical days for the next 30 years... :)

The amazing thing is that, either partly because of what God is doing in our lives, or maybe because I'm more of a Jonah than a David, the church has been experiencing some incredible things over the past few months that can truly only be attributed to God's hand of blessing. The church is growing and flourishing and being blessed in so many amazing ways...we truly miss being home and being a part of what's going on at NHC.

2) How are your medical bills being taken care of?

The simple answer is that we have no idea other than that God continues to bless us in extraordinary ways.

Tricia's yearly medical bill over the past few years is astronomical. She has spent an average of about 20 days per year in the hospital over the past three + years. We have a very high deductible, which we have met before the end of January every year. Our biggest out-of-pocket expense has been her medications and equipment.

The total cost of an average double lung transplant at Duke is somewhere in the ballpark of $300,000.

I honestly have no clue what is going on with Gwyneth's medical bills, but quite honestly, that's the least of our concerns at the moment, and we know that God will take care of us.

We have incredible health insurance (you get what you pay for)...it would take an entire blog post to share the miracle of how we we have been blessed with good, secure insurance. One of the biggest reasons that many people are turned away from being admitted into a transplant center is the inability to pay for the medical bills due to lack of insurance. Our insurance is paying for nearly every penny of Tricia's transplant, as well as several thousand dollars of our housing costs during the transplant process.

Through God's grace, my parents had the wisdom to set up a Trust Fund for Tricia about two years ago to help with her medical bills. Hundreds of family, friends and total strangers have donated to help us, for which we are incredibly grateful. This trust fund can help to cover the cost of meds, equipment, travel expenses, housing, and any other expenses related to Tricia's medical care. The trust fund does NOT cover any of Gwyneth's medical expenses or any personal finances. (If anyone is seriously interested in finding out more info about the legalities of starting a trust fund, you can email me your questions)

About a year ago, after more than one attempt, Tricia was finally accepted for Social Security Disability Isurance. It's not a pot of gold by any means, but it does help.

Also, both Tricia and Gwyneth are now receiving Medicaid benefits, which is very helpful at the drug store, especially.

I'm sure that there are even more ways to secure financial help for medical needs. The key is contacting and befriending the people who know. One of the best places to start is with a medical social worker.

I have no idea if any of this info will be helpful...I hope it is. You can ask me more questions about this stuff, but I'm not sure that I can give you much more info.

Thanks.

Nate

Transplant Update (2.20.08-3:15pm) + Q&A

The TX coordinator just came by again. Tricia signed the papers. She told us it will definitely be by the weekend, maybe tomorrow. I'll let you know.

Q&A

> As always, I say this with love... I've been asked several transplant related questions that I've already answered several times...I want to encourage you, if you're new to the blog to use the "Labels" over there on the right of your screen to do a little research. Also, Google is a great tool. I would love to answer every question, but I just don't have the time or energy, so I hope you understand. But, just to be nice...

> There is no way to know how long Tricia will be on the list...the average double lung TX wait here at Duke is a few months. The odds of Tricia being alive this time next year without a transplant are very, very small, and her window of opportunity is even smaller, so we don't have much time. It could be the minute after she gets listed, or it could never happen.

> The vent that Tricia is on is not portable. Like I said, without a new set of lungs, her CF will kill her in the near future.

> Gwyneth "sleeps" probably 22 hours a day right now (that's just my guess from observing). The only times she seems to be truly awake is when the nurses or other staff are messing with her...every now and then she'll be awake on her own for a few minutes. She does look around, but I've been told that she has little control over her eye motion, and that she probably doesn't register with anything she's seeing yet. I do think she can recognize the sound of mine and Tricia's voices (although Tricia can't speak when she's on the portable vent in the nursery).

> There's another great question that was asked that I'm going to devote an entire post to later.

Thanks!

Nate

11:12am Update with Q&A

We're still waiting to hear from the transplant team...it may be a while.

Tricia is having a good day again. She's busy at the moment checking emails and other stuffs.

Gwyneth is doing well. I just went down and took her birthday pictures, which I'll post later. She's doing great on the CPAP. The MRSA swab was negative...three more and we'll be back in a normal room (which I like a lot better).

Q&A:

> Tricia will probably not make it home before her transplant...she would have to be completely off the vent for that to happen, and the risk of infection and such is just too great of a risk either way.

> Tricia tells me that her trach does not hurt her at all. It's a little uncomfortable at times, and it's certainly restricting while she's attached to the vent. It's been a great thing for her so far.

> I'm actually just using the simple HP photo editing software that came with one of my printers or cameras or something...the only thing I'm really doing is a little cropping, a little antiquing, and/or a little "soft glow".

> Most of the time, I'm using a EFS 18-55mm lens with my Canon.

> The silly pics of Tricia and I from the last video were actually all taken with my MacBook Pro (way cool "laptop" with a built-in camera, for all you PC people) without any post-editing...Macs are just cool like that.

Nate

1:15pm Update & Q&A

Tricia is having a good day. Her fever from yesterday is gone. She's got some new clothes on, which make anyone feel good. She's sitting by the window, about to go on another trach collar trial and do some PT.

We're praying that Tricia will be listed tomorrow. We'd really appreciate it if you'd join us.

Gwyneth was moved to CPAP yesterday and is doing great so far. I got to hold her last night while they changed her incubator. They're increasing her feedings today, which is also great news.

A short Q&A:

> I actually don't drink caffeine...I never drink coffee and I only have about 1 soda w/caffeine a week.

> "Bump" means that I'm moving an older post up to the top of the list.

> Actually, Tricia's nurses do have the freedom to bump and rearrange a few of the things they do to/for her so that she can get a little more sleep at times...some do it, and others don't...I'm sure this might be different at other hospitals, but that's how it works here (and we're thankful for those nurses who are willing to do it).

I'll post some new pics later today when I have a better connection.

Thanks!

Nate