Friday, October 16, 2009

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.

H
ow 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

29 comments:

Anonymous said...

Both of my girls wear glasses, and both got them before they were a year old. We also had a VERY difficult time finding glasses for them, but never saw a pair like Gwenyth's. I'll have to check that site out.

And--in case you were wondering :) I once asked the opthamologist how he knew what their prescription was. He said he shines a light shaped like a cross in their eye. On a "normal vision" eye, the light is focused perfectly ON the retnia. When a person is near or far sighted the cross is focused either INFRONT of BEHIND the retnia. (can't remember which one he told me was for which!) Then he holds up the different lenses infront of the eye until he sees the cross focus ON the retnia, then he knows their prescription! I'm sure it's a very simplified version of what really happens, but I thought that was pretty cool.

Jennifer said...

You mentioned Tricia eats a high calorie/high fat diet, is this because of the transplant? Also what does she eat on a daily basis?

CFHusband said...

@Jennifer

Most CF patients (especially those with the digestive issues) are recommended to be on a high fat/high calorie diet because they have severe issues with gaining and maintaining weight due to the amount of energy the body uses to keep the lungs pumping, and the inability of the stomach to digest food on it's own, among other things. She eats most foods like anyone else, but she's not as concerned about "eating healthy" as most of the rest of us are. This does create some conflict with her diabetes, but it's part of the CF/TX life.

Melissa said...

I was just wondering how tall Gwenyth is. Our daughter seems to have gotten stuck at the 18.5-19lb point as well... though I'm sure she'll gain some more eventually! But, she is about 25.5-26in tall, and pictures of Gwenyth always make me think she's about the same size as our little one, so I was just wondering how close to the same size they really are. :-)

Renee said...

I wanted to ask this, but the comments were closed on the other post (I saw it too late.)
Is your church ever concerned the dune will shift and damage the building/property? I wonder that every year on vacation. I think I remember being a pre-teen on my first visit to the OBX and the dune seemed almost on top of the road. Or at least it seemed like the hang-gliders could crash on the road.

Kelli said...

Miraflex and Solo Bambino for babies are the BEST...in my humble opinion. Thanks so much for taking the time to share of your family life and the devotion you have for Christ. Prayers from SC!!

Momof2bz said...

Awesome question and answer post! I love learning more about you all. My prayers are with you especially with all the upcoming Gwyneth activity.

I had one question but I didn't get it in before the deadline. It's easy so hopefully it will get answered. Where is your annual Trunk or Treat video? They are usually funny and I look forward to them. Just wondering :)

Barb said...

Have you or do you expect to have contact with Tricia's donor's family? I understand if this is a private matter.

aprilmoonflower said...

What's your favorite ice cream? I mean besides Rita's of course..though I think that was custard or ice? ;)

aprilmoonflower said...

Also how do you manage to lose weight at the same time Tricia eats high fat? Do you make separate foods?

Emily said...

I have diabetes, too, post-transplant, and MAN is it a pain during admissions!!! ARGH, glad I'm not the only one who feels that way.
GREAT to hear that T&G are doing so well!!! Yay!!!

Samantha said...

thanks for answering my question! although i think i liked your dad's answer better ;) G sure is the cutest baby i've ever seen, but those glasses! ohmygoodness! so adorable!!! thanks for sharing your lives with all of us!

Cristi said...

Good questions and very informative!

Dana D said...

I read that Gwyneth is in PT & OT weekly. One of our children is also in PT & OT weekly (mild CP). Just a little FYI in case you didn't know... you can buy a Wii and Wii Fit and write them off on your taxes with a note from your therapist. They are considered at-home medical supplies/equipment. Our PT told us about it this past Christmas! (We're in SC, but I'd think tax laws would be the same regardless of which state you're in.) Anyway, it's a great way to encourage him to do even more of his weekly exercises. And I'd think many of the balancing and hula hooping games would be things Gwyneth could have fun with- even at her age. Or, if she's not ready for one yet, at least you'll know about the tax write-off part! :)

Carol said...

I loved your comments about Halloween! Thanks!

Karla said...

I enjoyed the Q and A - thank you! I have been silently following your blog for over a year now. I find your story inspiring as I have CF too. I was diagnosed as an adult, so my story is much different that Tricia's though, and I have a milder case. I was wondering, how long does it take Tricia to do her treatments each day, and what does she do with Gwyneth during that time? I have a toddler and am open to any creative ideas on how to manage her and my treatments!

Tammy said...

Wow! Thanks so much for the Q& A. It is so nice of you guys to share an update.

Amy said...

That was a nice post (and very informative). I also love the oreo photos from your previous post...I think I'll add those to our shopping list today.

Anonymous said...

Your family is an inspiration and a blessing. May the Lord continue to bless your wonderful family

Andy Lawrenson said...

you callin my babies "chubby"?

Mary said...

Just wanted to let you all know I'm still praying for you.

Mary
Florida

16 blessings'mom said...

I have been following your blog for a long long time, and I am so thankful that things are going well for your family now, but mostly that you seem to be so at peace about what God sends your way. It is just plain encouraging to my spirit to read your blog. And it helps that the pics of little Gwyneth are adorable!!!

della

marlene7038 said...

Hey Tricia, do you feel as good as you look? You don't know me but I love you and pray for you!

rebekah said...

you guys are so honest its crazy. think i pray more for your ability to maintain and demonstrate Christ to so many than for all three of your health needs. So many people come and "visit" and I think you have the greatest reach to witness its crazy. Either way, I am still always thinking and praying for you guys. Thanks for loving Jesus and letting others into your life.

Anonymous said...

Have you heard about Eva (65redroses.livejournal.com)? She's rejecting her lungs. I've been glancing at her story from time to time...it looks like she needs prayers right now and I just wanted to pass that on in case you didn't know.

BrunetteKoala said...

Thanks so much for answering our questions. I'm so happy to hear that Jeff is still in remission. Yay!! (long may it last).

Interesting to see and hear about Hallowe'en take, as here in Scotland Hallowe'en tends to be a huge no-no for Christians, but I think NHC (and I've noticed other churches in US do it too?) idea of Trunk or Treat is fantastic.

CFHusband said...

@Melissa

Gwyneth is about 28 inches tall.

@Renee

We're not concerned about the dunes. The park trucks sand over the other side every couple of years.

@Barb

Tricia wrote to her donor family several months ago, but we have not heard back and will respect their privacy by not attempting to contact them again.

@aprilmoonflower

I love any kind of ice cream you put in front of me.

I drink a lot of water and just try to eat smaller portions.

@Karla

Because Tricia's new lungs do not have CF, she does not need to do the daily breathing treatments anymore.

Kathy - mom of many said...

I do have a question...

I read an article today at http://www.msnbc.msn.com/id/33441437/ns/health-health_care/
about health insurance tragedies.
I was wondering if you have faced any of these types of situations (without being intrusive into your financial state) in all the medical treatment your family has experienced in the past few years.

My mother died in June after three months in the hospital (actually it was four different facilities they moved her around to). I was amazed at the control the insurance company had over her care, her length of stay, her transfer to a lesser quality facility and the general care she received. It was frightening. Have you experienced a situation where your health insurance company influenced the level of care your family received?

I know God is in control and our days on earth are already known by our Creator, but I can't help but wonder if something more could have helped my Mom if not for the actions of the health insurance company.

Kathy - mom of many said...

Oh, I forgot one more thing...how is your Mom's hand doing since the knife injury so long ago? Does she have full use of it?