Latest Pics

With life getting busy with life, it's harder to find time to take lots of pics, which is a good thing, IMO. Here are a few pics of the past week.







BTW, Gwyneth is still on the nasal cannula, but we take it off every now and then to keep the skin on her face from becoming irritated...for some reason, most of our pics of her recently are without the O2. I don't have much else to update about her because we haven't had any appointments the past few weeks, but we have several coming up, so check back in to find out how she's doing.

Thanks!

Nate

Kirschner Family Vacation (Day 7)

I had to work all day/evening on Thursday and Friday, so I missed all of the fun, but here are a few pics from Saturday, the last full day at the beach house with everyone.









Nate

Kirschner Family Vacation (Day 4)

The family pics were a big success! The weather was perfect, and all the little kids were in good moods for the most part. Here are a few of my favorites from the evening...











I'll show you the pics of Tricia, Gwyneth and I tomorrow!

Nate

Kirschner Family Vacation (Day 3)

We spent some time yesterday evening out on the beach with a few of the kids. But first, here's a pic of Uncle Joe and Aunt Carolyn just because I haven't shown you a pic of them yet.








Nate

PS. The pics tonight went great! I'll share a few of my favorites with you tomorrow!

5 MILLION HITS!!!

WOW!

You people are crazy. Am I really that good looking that you keep coming back for more?

I'm taking the day off from work to get some fun beach time in with the Krazy Kirschners, and this evening I'll be taking some family pics of everyone out on the beach.

I hope you enjoy your day as well!

Nate

PS. My time with the Chamber went well this morning...we'll see if it produces anything.

Kirschner Family Vacation (Day 2)

The highlight of day 2? ICE CREAM!!!











Nate

Kirschner Family Vacation (Day 1)

Here are a few of my favorite pics from the first day of the big beach vacation week. 22 people (including what seems like 37 kids under the age of 5) in the immediate Kirschner family (although, most of us have different last names), everyone but us and the parents and Frank sleeping at the beach house (and by "beach house" I mean a ginormous house about 100 yards from the ocean). Unfortunately, Don, Frank and I have to work during the week, so we'll miss lots of the fun, but I'm sure I'll be hanging over there every evening. Tonight, if the weather is cooperating and everyone is in a good mood, we'll walk over the dunes and take some fun family pics.

Gwyneth hanging with Aunt Janet.

Cousin Ja. eats more food than I do. Seriously.

Same hair, different cousin.

Getting to know Cousin Bry.

Cousin L. smiles every time she sees my camera.

Cousin Bri. & my favorite pic of the day.

Cousin Je.

I'm basically her favorite uncle.

She's not laughing...she's stuffing rice crispies into her mouth...

...and trying to keep them there.

Out on the deck.

Nate

On The Beach!

The smoke from the nearby forest fire finally dissipated enough to allow Tricia and I to go out to the beach (which is like a mile from my parents' house) for a few minutes a few evenings ago...



Meka loves the beach almost as much as we do...she enjoys eating sand more than we do...


Hopefully Gwyneth can come with us next time!

Nate

The White Rose Guitar

Doyle Dykes is one of the most respected fingerstyle guitarists in the world. My dad and I got to hear him play a few years back in Southern CA before either of us knew who he was. Simply amazing.

Taylor Guitars partnered with Doyle several years ago to create a personalized guitar for Doyle based on his own specifications...the Taylor Doyle Dykes Signature Model Guitar. They began producing Doyle's guitar in "black" and "natural" (colors) for the public shortly after.

Beyond his specific musical, electronic and stylistic requests, the most identifiable feature of Doyle's guitar is the white rose of mother of pearl inlaid in the guitar head. Everywhere Doyle travels, he always plays a song he wrote for his daughter called "White Rose for Heidi". Before playing the song, he tells the following story...

When my oldest daughter, Heidi, was four years old, I asked if she wanted anything special from God. We were saying our bedtime prayers. She replied, "Yes Daddy, there is one thing I've been thinking about." "What is that?" I asked. "A rose," she said. "I'd like God to bring me a rose."

The next day, I'd forgotten about it. That night at prayer time, she again asked, "Daddy, how come God didn't bring my rose today?" I felt bad, as well as bewildered. I was really at a loss for words. Suddenly, I said, "Well, maybe you need to tell Him what color rose you want." She said, "Oh, well I've been thinking about a white one." We then asked God to deliver a white rose for Heidi.

The next night, after a concert a few hours away, a little lady, who apparently was "special," walked up to me after everyone had left. She asked, "Are you Doyle Dykes?" "Yes," I replied. "God told me to bring you something from my garden today." She handed me what I thought to be carrots or some other vegetable from her garden that was wrapped in aluminum foil. "Thank you, I'll enjoy eating this," I said. She giggled like a child and said, "Uh...You'd better open it."

I peeled back the aluminum foil to find a beautiful, solitary "White rose for Heidi."

A little over a year ago, on the second Sunday of June, my church presented me with a gift of money that they had collected, telling me to buy a new guitar. I've had the same guitar that my parent's bought for me as a Christmas gift about 15 years ago. It's been a solid, wonderful guitar for many years, but has never been something that was well suited for use on stage, especially in our church building playing with our band...in fact, I've been using a borrowed guitar on Sunday mornings for the past year (thanks, Rich!).

My dream has always been to own a Taylor guitar, and the church's gift not only allowed me to buy a Taylor, but to buy one that I would never need or want to replace.

However, partly because I'm lazy, but partly because I knew owning a new Taylor would be as much a curse as a blessing while we lived in Durham (because I would not have been able to play it very much), I put off making the purchase.

All this past year, Tricia has been bugging me about buying the guitar, but I've just been reluctant to do so until we were home again. I shopped quite a bit, looking for exactly what I wanted to buy...I just never bit the bullet. A few months back, after Gwyneth was born, I remembered Doyle and the story he told about his white rose guitar, and mentioned to Tricia how it would be cool to own one of those guitars. We even looked up a few on the internet.

About a month ago, she began telling me about how cool my Father's Day gift was going to be. I couldn't imagine anything better than her Christmas Gift and Birthday Gift for me this past year. But in the back of my mind I thought that maybe she was trying to get my guitar for me, which was a little scary because I knew the specifications I wanted, and I knew that Tricia didn't know much about guitars.

Despite my best efforts, including some intense questioning when she was coming out of sedation the other day (haha), she wouldn't tell me, even when father's day came and went last week. All she would say is that it was the best ever and that it was waiting for me when we got home.

Well, needless to say, Tricia is basically the best wife ever. She found a brand new, natural white rose guitar for an incredible price. She and my mom had it laying open in it's case for me when we got home yesterday, just in time for me to drool for a few minutes before packing it up and taking it to band practice. It is just about the most beautiful guitar in the world, it sounds incredible (especially compared to my old guitar), and it has some very rich and sentimental significance to me (hi, Gwyneth Rose!).

So, without further ado, here are a few pics of my new White Rose Guitar...




I've named her Emma Claire (or, E-Claire, for short).

I have a few more pics of the guitar posted on my Photo Blog. I'll let Tricia post, on her blog, the pics of me actually seeing it for the first time (I'll let you know when she does that).

A HUGE thank you to my Nags Head Church family...I pray that I can use your beautiful gift to continue worshipping God with you for many years to come!

And, here is a video of Doyle himself playing his beautiful song, "White Rose for Heidi".



Thanks!

Nate

Good 24 Hours

Tricia's first chemo treatment went very well. No side effects except for a slight temperature rise which she didn't even notice. We're hoping that they'll allow us to do the remainder of her 4 week treatment somewhere closer to home instead of having to drive to Durham once a week of the next month. She was released shortly after the injection was done, and we spent a good night at the hotel before heading home yesterday.

Gwyneth is doing very well with extra O2 and meds. Her breathing is back to normal, and she is able to eat more...we're guessing she's probably up to 6.5lbs now...I'm taking her to grocery store to weigh her on the deli scale later today...

Our trip yesterday went very well. Got off around 11:30 and arrived at my parents' house by 3:30. Gwyneth did very well...we only had to make one pit stop this time. It's good to be home again, and we're praying hard that we won't need to go back to Duke for more than a one-day outpatient appointment for the next few months.

When we arrived home Tricia had my belated father's day gift waiting for me...I won't tell you what it is yet, but if you check in tomorrow morning, I promise I'll have pics and and stories to tell about it. I can promise you that it's basically the coolest father's day gift any dad has ever gotten, so don't miss it!

I also picked up Meka yesterday (thanks, again Don and Frank!!!), and hopefully she's with us full-time again, as long as we can keep from any extended trips to Duke. She doesn't seem too interested in Gwyneth right now, which is fine with us because she can be high energy and a little reckless when she gets excited. Ralphie is still hanging with Grandma until we get a place of our own...I think they're both pretty happy with that arrangement.

To top it all off, I got to practice with the band last night for just the second time since December, which is always one of the highlights of my week!

I have some family in town...my uncle and aunt and cousin...we're going to hang out with them tonight. Tricia's family begins to trickle in late tonight and throughout the weekend. She's looking forward to spending lots of time with them all at the beach house they've rented for the week and introducing everyone to outside-of-the-hospital Gwyneth. I'm looking forward to getting a full week's worth of work at the church, and hanging with the Kirschner clan in the evenings!

Anyway, that's a quick update. I've been so busy the past few weeks, that I haven't had a chance to take many pictures, but I promise this next week will produce a lot of new and fun pics. Here are a few pics of Gwyneth and I goofing around with the Mac a few days ago.









Thanks!!!

Nate

BLOG HIJACK - Happy First Father's Day Nathan

A blogger made this suggestion to me and I think it's a great idea!
Post your Father's Day greeting to Nate on his first Father's Day.

I can do these kinds of things because:
1. I'm his dad, so he has to put up with me.
2. He gave me access to his blog way back when things were scary/busy so I could post updates.

So let it happen Nathan. No dad has a greater reason to smile big than you.

Happy Father's Day son!
(Where's Gwyneth taking you for dinner?)

Rick Lawrenson

More of Meka

These are from last Sunday.

Looking for Cats...

Hanging with Tricia...

Meeting Miss Gwyneth...

Nate

Killing Time

When Tricia's original PET Scan was rescheduled yesterday morning, we had some time to kill, so we walked over to the Duke Gardens for an hour.





I've posted some more pics of the gardens over on my Photo Blog!

Nate

Meka!

We're letting Frank watch her for a few more days, but she came by for a visit today. She was very excited to see me!



Nate

The Trip Home

The trip home went very well. Gwyneth slept most of the time, so we only had to make to pit stops on her account to change a few diapers. Tricia drove the whole way, so I got to sit in the back seat and keep Gwyneth happy when she was awake. Our car was loaded from top to bottom everywhere but our three occupied seats...we had already sent two car-fulls home with our parents last week...I have no idea how in the world we accumulated that much stuff. Below is our car with just Gwyneth's stuff (99% of which has been given to us by you crazy blog readers).



I was told that the OBX community was buzzing about us coming home (which still amazes me), and that several local businesses and churches had "welcome home" signs up for us, so we took the "scenic" rout home through Manteo, and sure enough, in Manteo, Nags Head, Kill Devil Hill and Kitty Hawk (where my parents live), there were several signs and banners. Here are a few...

My Grandma's house (our old house...thanks, Mark and Sue!)...we stopped to see Grandma and Ralphie! Grandma was excited to finally hold her great-granddaughter, and Ralphie was licking Tricia like she hadn't been gone a day.



Mama Kwan's...basically my favorite restaurant ever...you'll probably see me there sometime later this week!


Make sure you check out my Dad's Blog and Andy's Blog to see what else was waiting for us!

While we're not in our own home yet, it is incredible to be far away from the hospital and back on the OBX. I'm looking forward to going to work later today for the first time in months (outside of working from my computer in Durham). Tricia is ready to take on her first day by herself as a mommy.

Looks like we'll be seeing a lot of blog readers on Sunday, many of whom just happen to be in town on vacation.

Later!

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

Update

We are loving having Gwyneth home with us! It's been amazing to see the timing of everything. Had she been discharged earlier, Tricia would have been too weak to do much with her. If she were discharged closer to when we are hoping to go home to the OBX, we wouldn't have all of this time to spend focused on her. God continues to bless us.

The trip home was very good. A video camera met us on our way out, and I've heard rumors that we were on ABC11 again, but I missed it and haven't found it yet on the website (I'll let you know if I do find it). Gwyneth was sleeping by the time we made it to the car, and she slept all the way home.

The whole first 24 hours was a little strange as both Tricia and I kept consciously looking/feeling for all of the monitor feeds that have been strapped to her for all of those weeks...it's incredible to be able to pick her up and carry her around anywhere we want to. When we got home, I sat in the glider with her and started crying.

She came home with several meds and a few breathing treatments. Everything is to help her as she continues to catch up with her development. She has what is called "Chronic Lung Disease", which basically means that her lungs are still underdeveloped (for a newborn 4+ weeks after the due-date), a very common thing for a micro-preemie. It sounds a lot worse than it is...she has a little trouble catching her breath when she's very active, and should grow out of it within a few years. It should have no affect on her continued development.

She has breathing treatments just like Tricia did with her CF, with some of the same drugs that Tricia has been on. She should hopefully be done with the breathing treatments soon. (and, because I know somebody's going to ask...again, Gwyneth does NOT have CF)

All that means that there is a little more to remember to do than with a normal infant. All of her meds are liquids that are mixed in with her food. She's eating ad lib, which is about every three hours. She was transitioned completely off donor breast milk and onto formula over her last few weeks in the NICU, and other than a little gas (which is also normal), she is doing great with her feedings.

I've been feeding Gwyneth throughout the night, letting Tricia get the sleep she needs to continue recovering, and for the most part, she is sleeping well and letting us get plenty of sleep. Agnes (Tricia's mom) is here for a while to help as we adjust to life as three, which has been a huge help. With Gwyneth's minimal medical needs, and Tricia's continued needs, it can be a little crazy to remember everything and maintain a sense of normalcy, but it's been going very well.

We had our first outpatient Pediatric appointment on Friday. It was just the two of us as Tricia was at PT. Everything continues to look great, and her doc (who was seeing her for the first time) said she looks very developed for her history. We have another peds appointment tomorrow, and an appointment with a pediatric pulmonologist later in the week....it's actually the same pulmonologist that followed Tricia when she was a child at CHOP.

There is always a chance that, if she gets sick or has a setback, she'll be back in the hospital, but every day improves her chances of not having that happen. We are still praying that we'll be able to go home to the OBX within the next 3-4 weeks when Tricia finishes up her PT.

A few highlights from our time home...

> I took her for a walk outside our hotel the afternoon we got home (she was wide awake) and showed her things like her first tree, her first sidewalk, her first cloud, her first helicopter, and her first hot tub. She was very impressed.

> Her first trip to Babies"R"Us. She basically wanted everything...slightly annoying, but she'll learn soon enough to do that kind of thing only around the grandparents.

> Her first episode of SportsCenter...I was sure to point out Mia Hamm and the NY Mets. I'm teaching her to spit at the TV with me whenever the NY Yankees and Dallas Cowgirls make an appearance.

That's basically it. My email is still not sending, so don't sweat if you haven't heard from me in the past few days...hopefully I can get it fixed tomorrow. I'll post some pics when I get a chance.

Thanks!

Nate

Yard Sale Tomorrow!!!

Be there or be square!

There is some seriously good stuff to take a look at...here's an email I received a few days ago from one of the organizers...

We have more clothes than WalMart!! We have microwaves, a convection oven, computers, printers, lots of kitchen and household stuff, washing machine and the list goes on and on.

We are also having a raffle:
a 42 piece tool set
2 gift certificates from hair dressers
an autographed photo of Mickey Rooney
limited edition photo of Lucille Ball
a gift certificate for free car detailing
a gift certificate for house cleaning
agift certificate for tupperware
an autographed CD from Coastline Band.

I'm going to do my best to try to make it out there at some point for a little while. Hope to see you there! The weatherman just said it's going to be a "Beautiful Day!"

Nate

40 Minutes of Sunshine

(written on 5.13.08)

So, I received an email from Jessica Claire a few months back telling me that she was following our blog and wanting to know if we'd be interested in having a photo shoot with her...

Don't know who Jessica Claire is? That's OK, because neither did we...until I checked out her blog and discovered that she's basically one of the best photographers in the world (according to popphoto.com, and I agree).

Anyway, Jessica has family in the RDU area and was in town this weekend for a visit...and, of course, we said "YES!" to her offer. This kind of opportunity doesn't come around very often!

The forecast for yesterday was "partly cloudy with a 20% chance of rain". It was raining and cold when we woke up. It was raining and cold when we left to drive to meet Jessica.

As we pulled up to the shoot location, the clouds parted and the sun came out. For 40 minutes, the weather was perfect.

As we entered Elmo's Diner for a late breakfast, the sun disappeared...it never showed it's face again for the rest of the day.

And, we all got to spend some time with Gwyneth later that morning as well! That's what I call a perfect Mother's Day/Birthday gift for Tricia.

Here's Jessica with Gwyneth...

Thanks, Jessica! The Photos (amazing!) and the time spent getting to know you (also amazing!) are such a wonderful gift!

Nate

Birthday Fun!

Tricia is at a hair salon with one of her favorite nurses (hey Lindsy!) getting her hair done...Lindsy has some wild (but fun) hair...I'm very interested to see what Tricia looks like when I pick her up from PT in a little while... It should be nice for her since she hasn't had anything "professionally" done with her hair since Early January.

Tricia's birthday gift came in this morning after I had dropped her off with Lindsy! She knows what she's getting, but didn't think it would be here this early. She'll find out when she gets home later today, and she'll be very excited as she's been thinking about getting one ever since she found out she was pregnant.

It's a glider (for those who may not know), basically the ultimate rocking chair...perfect for a mama and baby to spend some peaceful time together.

Nate