Wednesday, April 30, 2008

April Beach 104 Interview (Part 1)

Here's the audio of the radio interview I recorded earlier (via phone) in the week with Moose and Jody. With some good editing, it turned out well. I added the pic for a laugh. :)

video

Part 2 of 3 coming tomorrow...

Nate

Yesterday












Check out some more pics of the Duke Gardens at my Photo Blog.

Nate

Tuesday, April 29, 2008

White Rose Blooming (16 Weeks)

Every Tuesday while you're in the hospital, we'll take a picture with your pug so that everyone can see how much you are growing!

You are now 16 inches long, and you weigh 4lbs 2oz!

Your sixteenth week was another good week! You grew a few more ounces, and you're moving closer and closer to the day you'll be coming home with us! You continue to eat a little more from the bottle everyday, and the nurses and doctors are very happy with how well you're growing.

Your mommy and daddy we able to spend a lot of time with you this week, as were your Grandma K. and your Aunt Janet! You love being in your crib, continuing to maintain your own body temp and breathe on your own. And, this past week, we celebrated the fact that you are now completely full-term at 40 weeks gestation! You're just like any other newborn baby, except that you're small.

In the next week, we're praying that your eyes continue to grow and become more healthy and that you make it all the way to the 4lbs and 6oz that you need to come home!

We love you!



Compare our Blessed White Rose at:

2 Weeks
3 Weeks
4 Weeks
5 Weeks
6 Weeks
7 Weeks
8 Weeks
9 Weeks
10 Weeks
11 Weeks
12 Weeks
13 Weeks
14 Weeks
15 Weeks

Clinic Day (Week 1)

Today was a most excellent day...Tricia says it was her best day post-transplant so far. Here's a few reasons why...

We arrived at Duke South around 7:45am (which is a miracle in and of itself, if you know how much Tricia likes her sleep...) to make her 8am Swallow Study appointment. The swallow study is done by Speech Therapy, and in Tricia's case, helps to determine if and what Tricia is allowed to eat and drink. Today's study went well, and Tricia is now allowed to eat a lot of "normal" food for the first time since early January. She is still not allowed to drink "thin" liquids (basically the stuff that you and I drink everyday...water, soda, juice, etc.), but, needless to say, she's very excited.

The next stop was to get her blood gas and culture around 9am. We'll hear back about her gas levels tomorrow, but everything tells us that they will be good. She also had her first official PFT (Pulmonary Function Test) which help to accurately measure how well her lungs are functioning. Her FEV1 level was at 37%, which is more than twice as high as her lowest known level a few months ago. This is incredible to us!

Next up around 10:30 was an x-ray, which looked good.

We then had about 3.5 hours to kill until Tricia's appointment with her pulmonologist. So, we headed over to catch up with Gwyneth for about an hour (she's doing very well and continues to grow...more on her in a later post tonight). We then went out to find me some lunch (Tricia didn't get the news that she is allowed to eat until her afternoon appointment). Check out my new favorite sub place, Firehouse Subs. And, we still had an hour to walk around the entire Duke Gardens (which allowed Tricia to get her exercise in despite missing a day of PT).

Made it back to Duke in time for the appointment. Everything looks good so far! No signs of infection or rejection yet. And, Tricia got her chest tube sutures and remaining 51 staples across her chest removed today, which totally made Tricia's day! She is very excited to lay on her sides to sleep with limited discomfort/pain for the first time since her surgery!

And, to finish the day off with a bang, we drove out to Cary to hunt down the nearest Rita's for Tricia's most favorite childhood treat of all time...an authentic Gelati. Tricia was in heaven...

Now we're chilling at home, thinking of all of the foods that Tricia is allowed to eat and wants to try out in the next little while and relaxing after a busy and fun day.

Pictures of the day coming soon...

Nate

Monday, April 28, 2008

Baby Girl

Nate

Clinic Day Tomorrow...

Tomorrow is Tricia's first "Clinic Day". Tricia's been to the Duke clinics too many times to count, but this will be her first as a TX patient, so there will be a lot of new things going on. From what we know, we should expect to possibly be there all day, mostly in waiting rooms between different appointments.

At least we can go hang with Gwyneth if we have a few big breaks.

I'll tell you about the day tomorrow night.

Nate

Beach 104 Interview (Part 2)

I spent several minutes on the phone with Moose and Jody from Beach 104 this morning, recording an interview about our story which I believe will be airing in segments over the next few days.

If you're near the OBX, take a listen in the morning hours and let me know how it goes! We are incredibly grateful for the opportunities to share our story and raise awareness for the things we are passionate about.

On a side note, I always call in to win Moose's accordion "name that tune" contest, but I never get through...I even have their phone number in my contact list on my cell phone...maybe someday.

Nate

Goodbye Meka

Meka is going to live with Don and Agnes and Frank for a little while until Tricia is healthy and the baby is settled in with us.

I'm very sad. So is she. Frank is happy.


Nate

CF Fundraiser In Raleigh

A Cystic Fibrosis Fundraiser is being organized in honor of Tricia and Gwyneth! Here's the lowdown...

What: Yard-sale/Craft-sale to Benefit the CFF

When:
Saturday, May 17, 7am until...

Where: 6700 Rock Quarry Rd, Raleigh, NC

Get Involved: If you're interested in either donating items or helping on the day of the event, please, EMAIL ME and let me know ASAP!

Thanks!

Nate

Sunday, April 27, 2008

VA Pilot (Again)

There's a quick update about Tricia and Gwyneth in the Virginian Pilot newspaper this morning (Sunday) in the North Carolina section. I believe it will also be in the Hampton Roads section tomorrow morning (Monday).

Nate

Some Pics

Nothing much interesting to tell you about today, so I thought I'd share a few more of our favorite pics with you from the past few weeks...












Nate

Saturday, April 26, 2008

Friday, April 25, 2008

Tour

I filmed this just a few minutes after saying goodbye to Tricia outside of the OR before her transplant surgery. I've been meaning to show this to you. If you suffer from motion sickness, be warned as I filmed it with my Mac.

This is where Tricia spent about 98% of her time from Jan. 30 to April 2, 2008.

video

Nate

Other Blogs

My Dad found a pic of my oldest sister when she was a newborn...you can really see the genetics in play.

Also, Uncle Andy's blogging more about Tricia and Gwyneth.

Nate

ABC Video Up! (Edit)

The video of Tricia leaving the hospital is up! The two guys shown several times in the second half of the video (and who I shake hands with at the very end) are the two surgeons who performed the surgery.

Check It Out Now!

Nate

PS. The web director for ABC11 says that our "story is unbelievable online.. people can't get enough." I think you're partly responsible for that... :)

Back In The Saddle Again...

Tricia began her Physical Therapy at the Center For Living yesterday! 1 day down, 22 to go!

Tricia must complete a minimum of 23 days of PT before she will be released to go home to the OBX.

She also has clinic appointments about once a week, including some other appointments, all of which may take days away from PT, so we'll probably be here for longer than the 4+ weeks that it would normally take to complete the PT.

She will go to the CFL Mon-Fri for about 4 hours every day. I'll find fun and constructive things to do around Durham while she's working out. Check out posts from last September and/or This Post for an idea of what our schedule is like right now. We're trying to visit Gwyneth a few times a day together as well.

The pain is still there, but it is getting less and less. She never experienced the back pain that most transplant patients complain of (due to the surgery itself), but her transplant incision and chest tube incisions are still hurting her. She is also still have pain and numbness in her right arm. She is finally able to sleep a little on her sides, and she has slept very well (comparatively) her first three nights home.

Tricia still has her trach. She'll probably have it removed sometime within the next few weeks. She is still relearning how to cough, and I am able to suction her at home if needed, although I have only needed to do that once so far. And, her voice is getting a little stronger.

She is still not allowed to eat or drink anything but thick liquids. She is "eating" mostly with her feeding tube. Tricia's goal weight has been 120 for the past several years. After the c-section, her weight had dropped to nearly 110, just before the transplant surgery, it had risen to around 124, and post-transplant surgery it had dropped again to 114. She is gaining slowly but surely now, and we've been told that it should be much easier for her to gain and maintain a healthy weight as long as her new lungs are functioning well.

It is amazing to watch the timing of everything continue to work so well for us. Gwyneth is doing so well that we are able to spend the time needed focusing on Tricia getting stronger and healthier so that we can both be ready for Gwyneth when she is discharged (hopefully within the next month). There is no way I would be able to handle, on my own, both Tricia and Gwyneth at home together right now.

Finally, somebody asked me if I was going to rename my blog because I am not "a CF husband anymore"...as I've explained before, Tricia still has CF. CF is much more than a lung disease, affecting literally every part of her body that produces any kind of secretions. Her new lungs are the only part of her that no longer has CF. Her pancreas is still deficient, meaning she still must take her enzymes. Her sweat is still salty, etc. etc.

Tricia will always have CF, and I will always be a CF Husband.

Thanks!

Nate

Thursday, April 24, 2008

Busy

Just a heads up...we've been so busy that I haven't had time to check and respond to most of the emails I've received this past week. So, if you sent me an email, just be patient and I'll get to it soon.

Thanks!

Nate

April 24

Today is the day the doctors originally told us to expect our first child to enter the world. Imagine how different our lives (and perhaps yours as well) would be if that had turned out to be the case.

We are thankful beyond words for the huge ways God has shown Himself in and through our lives and for the countless ways He has blessed us over these past several months. We never would have imagined that we'd be where we are now back on September 2, 2007 when we discovered Tricia was pregnant.



The reality that both Tricia and Gwyneth would survive and thrive after being given a 50% chance of surviving the pregnancy is amazing.

The possibility that Tricia would ever be a transplant candidate again after the pregnancy was limited.

The chances that Gwyneth would grow to full-term from 24+ weeks without any major complications was improbable.

The likelihood that Tricia would receive her new lungs after being listed and activated turned out to be nearly impossible.

Our God loves to move in impossible situations, not only to show us love, but to also show us His glory. We pray that, beyond everything else, people will see Him.

Nate

Wednesday, April 23, 2008

White Rose Blooming (15 Weeks)

Every Tuesday while you're in the hospital, we'll take a picture with your pug so that everyone can see how much you are growing!

You are now 16 inches long, and you weigh a whopping 4lbs!!!

Your fifteenth week was another great week! You grew nearly a full pound this past week, and not even your nurses know how to explain it! You are already outgrowing a lot of your clothes. You are looking and feeling healthy, and nearly everyday you seem to be more and more aware of your surroundings.

Your mommy finally was able to hold you without wearing a mask or gloves, which made both of you very happy. She walked into the nursery without a wheelchair for the first time as well, and has been able to spend more and more time with you. And, she finally was discharged from the hospital, which means that we get to spend some time getting things ready for you at home!

In the next week, we're praying that you continue eating more and more from your bottle and continue to grow and stay healthy so that we can take you home soon.

We love you!





Compare our Blessed White Rose at:

2 Weeks
3 Weeks
4 Weeks
5 Weeks
6 Weeks
7 Weeks
8 Weeks
9 Weeks
10 Weeks
11 Weeks
12 Weeks
13 Weeks
14 Weeks

Flesh of My Flesh (Part 2)

Tricia no longer has to wear mask and gloves with Gwyneth. These are from the past few days...

This was on Monday night, when Tricia walked
from her room to Gwyneth's and back again.

This was during our visit last night.
Nate

The Discharge

So, here's a basic rundown of yesterday...

We originally expected that Tricia would be discharged early afternoon (as she usually is) between her meds so that she would have time to get home for her next meds. Monday evening, we were told that she would be discharged around 10:30am on Tuesday, in part because there were two video cameras who wanted to be there to get Tricia leaving and saying goodbye to the staff, etc., and that was the time that best worked for everyone.

Needless to say, Tuesday morning was hectic and a little overwhelming. I came home around 7:30 to get a shower and walk Meka. I got back around 9 and began packing and moving our stuff from Tricia's room to the car, while she got ready and her nurse finished up all of the discharge stuff, and while her surgeons, doctors and the two cameramen showed up.

Once we were all ready, I wheeled Tricia into the hall where she made sure to hug everyone in sight. It was wet outside, so we made use of the underground tunnel and I wheeled her all the way to the car in the parking garage as two of the Duke staff and one of the cameramen followed us and waved goodbye as we drove away.

(On a side note, Tricia felt a little awkward about the whole thing, because she knows that not every transplant patients get the same kind of attention she has been receiving...but, we also realize that maybe the coverage that she's receiving will help bring more attention to the issues surrounding organ donation and transplantation.)

I had tears in my eyes as we left the garage, and that was most certainly the best drive ever! We first went to the drug store and picked up a bunch of new meds and other needed items before finally heading "home".

Meka was very excited to see us, and Tricia got right to work organizing her meds and equipment. More drugs and equipment were delivered to our room, and the Duke home-care nurse who will be helping Tricia as she completes her IV meds over the next several days came by and helped us get started with a few things.

We watched the 6:00 airing of our story on ABC11, although I missed the first half because I was sent on a mission to dig something out of the car. I was then sent on another mission to Target to find several more things that we needed and return to the drug store to pick up the remainder of the drugs. When I returned to the hotel, Tricia got her first shower in nearly four months. She said it was basically the best shower ever...

We then drove back to the hospital and spent an hour with Gwyneth...Tricia was pretty wiped out, but every little girl should celebrate her birthday with her family (and yes, I'll post her birthday pics at some point). Gwyneth has been a very happy baby the past few days, and you won't believe how much she weighs now...

We got home by 11, in time to begin Tricia's late-night meds and watch the ABC video again (again, I'm hoping they'll post the video online because it's really cool to see Tricia hugging all of her docs and nurses).

We had a great night's sleep (Tricia's still sleeping), and, even though I was up several times to take care of her meds, it was a beautiful thing not to have beeps and lights and nurses, etc. waking us up all night. Tricia is still finding it too uncomfortable to sleep on anything but her back, and her right arm is very soar and numb (had it checked out, and everything looks OK...probably just the result of the surgery and other medical things, and should heal eventually), which makes for tough sleeping, but I think it was still the best night's sleep she's had in a very long time.

Our suite is now a huge mess with bags and boxes of meds and equipment. A HUGE thanks to Jordan & Patience and Katie & Brent for spending two hours with me on Monday night cleaning everything from top to bottom (literally). I'm sure I'll be spending a lot of today moving things where Tricia tells me to move them, which is totally cool with me. :)

Tricia has a 4:30 evaluation at the Center for Living, and she should begin PT tomorrow afternoon. She is very excited to see all of the people at the CFL, but not so excited to put her recovery into high gear. We plan on spending as much time as possible with Gwyneth over the next few weeks, as well as finding some time to actually do some baby shopping and registering (I've heard rumors of a baby shower or two when we return home).

Check back in later for the latest pics and more info about what should be going on in the next several weeks.

Thanks!

Nate

Media Coverage

Here is the link for the ABC coverage from yesterday...no video of the discharge, yet (the video on the link is currently of the pre-transplant story from last month), but the text of the story is there.

Also, Yonat Shimron and the N&O updated our story in today's paper Here.

As always, we appreciate the opportunities to share our story and raise awareness for the things we are passionate about. Thanks!

Nate

Tuesday, April 22, 2008

Just Saw...

Us leaving the hospital! It actually wasn't the Part II that we had filmed last week (that should still air soon), but some video of Tricia today. I missed the first half, but Tricia saw it and we'll watch it again at 11pm. I'll let you know when/if it's online.

I've got to run out in a bit to get some things, and then we're planning on going to hang with Gwyneth later on...I'll try to blog at some point about our day, but if not will get to it tomorrow morning for sure.

Thanks!

Nate

ABC 11 Tonight?

I just heard that Part II of our story with Barbara Gibbs should be airing tonight at 6 and 11 here locally on ABC 11. We'll be watching and will let you know if it shows up online.

Nate

PS. We're "home"...I'll fill you in on the days activities later...

10:30am

Tricia is scheduled for discharge at 10:30 this morning! We're stoked!!!

Nate

Monday, April 21, 2008

Lots of Things

Without going into great detail, there are a lot of things to do and organize over the next 48 hours, including home medical care, new meds, new equipment, new insulin schedule, clinic appointments, etc.

We'll be at the hotel for the next several weeks as Tricia continues to recover and completes her rehab schedule, and while we wait for Gwyneth to be discharged.

We appreciate your thoughts and prayers as we reorganize our lives again.

Thanks!

Nate

Great News

Tricia had her last big chest tube pulled yesterday, which means, other than her feeding tube which can be turned on and off at any time, she is not strapped to anything for the first time in a very long time. She is walking without the help of the walker now, and was really moving fast last night.

As we circled her hall last night, I was able to hold her hand without gloves for the first time since early January. I can't tell you how incredible that was for me.

And, the biggest new of all...Tricia is scheduled to be discharged tomorrow (Tuesday, April 22)!!!

I'll be super busy between now and then, so if you don't read much from me over the next few days, don't be worried. I'll be sure to let you know what's going on when I can.

Thanks!

Nate

Sunday, April 20, 2008

Trip Home

Meka and I took a quick trip home to Nags Head yesterday afternoon to visit the family and check in at church with our friends. Surprised everyone at church, and it was awesome to lead worship again with the MilePost13 Band. We even made a quick stop to see Grandma and Ralphie...Meka was especially excited about hanging with her best friend for a few minutes. First time I've been home since December 27.

After the exciting morning at the CF walk, Meka basically slept the entire trip, either lying in the passenger's seat or leaning up against the back of the seat (like in the pic below). She wasn't even up for shooting a picture of me...lazy dog.


We were back in Durham by 6 tonight, and I'm back at the hospital now with the girls.

The next time I go home, it will be with my two healthy girls.

Nate

Saturday, April 19, 2008

Great Strides Walk Durham

A fun morning spent at the Great Strides Walk for CF in Durham today!

Agnes, me, Meka, Charlotte and Gabriel representing Team PattySue!


Team "Walking For Tricia", a group of blog readers, raised over $700 for CF!!!


Nate

Friday, April 18, 2008

Good Days...

The past two days have been good.

It has been perfect outside. It's nearly impossible to go back inside....



In fact, the only thing that brings us back inside is the thought of spending time with Gwyneth, which is why we go outside first... Tricia loves feeding Gwyneth, and she's better at it than I am (no surprise), and since Gwyneth loves to eat, it's good times all around.



I honestly cannot describe the emotions and thoughts and feelings I experience from seeing my two girls spending time together. Up until this past week, Tricia had only been able to spend about 4-5 hours TOTAL with Gwyneth...now she is able to spend an hour at a time, a few times a day.

I am blessed beyond measure.

Nate

Are You?

Edit - I realize that not everyone can participate in the following poll...many people have been organ donors for a while and many others are unable to be an organ donor for many reasons...this post is not meant to make anyone feel left out or guilty. The goal of this poll is simply to find out who may have been moved by Tricia's story to become an organ donor. I purposely didn't add other options, such as "I have always been an organ donor and have always known it's important", but please, feel free to leave a comment about yourself if you are unable to participate in the poll. Thanks!

During the 40 days that Tricia was on the transplant list (Feb. 22 - April 2), approximately 712 people (sons and daughters, parents, siblings, grandparents) died while awaiting an organ donation.

I have literally received thousands of comments and emails from people who have told me that they have become organ donors for the first time because of reading Tricia's story. I'm very curious to find out just how many people Tricia's story has effected in this way, because I think it is incredibly encouraging to know that we all have the ability to be used to change lives.

Please, take a few seconds to answer the following poll honestly. You can answer multiple times if more than one member of your family can participate. And, feel free to comment about your decision.

Thanks!

Nate

Best Health Blog Online


ConfessionsOfACFHusband.com has been listed as one of the Top Online Health Blogs by KeepTheDoctorAway.co.uk

Thanks!

Nate

Thursday, April 17, 2008

21 Laps!

Tricia walked well over a mile (approximately 6300 feet) today for the first time in a very long time. And, we spent a good hour rolling around outside, and another 45 minutes holding and feeding Gwyneth.

All said, a good day!

Nate

CF Walk This Saturday!!!

Gwyneth will be appearing for one day only, this Saturday, at the CF Great Strides Walk at Duke to sign autographs and kiss other babies heads...

OK...not really. But, I will be there at the Duke University East Campus and would love to see you there as well. Registration begins at 9am, but feel free to swing by anytime up until about 1pm.

I'm told there will be lots of food and fun and games for the whole family as well as a big raffle, so don't forget to bring your wallet.

Even if you haven't raised any money, and even if you can't "walk", you are still welcome to come.

Click Here for more info!

I'll see you there!!!

Nate

The Next Several Weeks

So, here's what the next several weeks should look like for us...

Tricia needs to meet four criteria to be discharged:

1) Walking at least 1 mile daily. She walked a world record 16 laps today, which equates to about 4700 feet, which equates to about 4/5 a mile.

2) No chest tubes. She had two more removed two days ago, and another removed today. She's got one big tube and two small tubes left...the big one should be removed in the next few days, and the smaller tubes will probably be removed on her last day.

3) Able to cough, especially cough up the secretions that she is currently needing the bronchoscopy/suctioning for. She is literally having to relearn how to cough, and because she was on the vent for 3 months, her muscles are gaining strength slowly.

4) No signs of infection or severe rejection. They won't let her go if she's just going to get sicker at home. So far, so good.

She is doing great with her breathing and talking. She talked on camera with Barbara yesterday for at least 25 minutes, and I got my first phone call from her in over 3 months the other day, which was super cool. She will keep her trach until sometime between being released from the hospital and going home. This will allow her to easily be bronched every week and be a safeguard for an emergency.

Her walks are going great. She walked twice today, 6 laps in the morning and 10 laps this afternoon. She only stopped once for a breather on our walk in the afternoon. She is still walking with the Swedish walker, but mostly just to carry her chest tubes. She has been asking for less pain meds the past few days.

So, we're hoping that Tricia might be discharged by Wednesday of next week.

Lots of people are coming by to talk with us. A pharmacist came by to explain all of the new drugs she'll be on. The coordinator to teach us about lots of different transplant care. The patient resource manager to discuss a few things. I'll talk more about some of this stuff later.

Once Tricia is discharged, the first thing we need to do is go pick up her drugs and equipment. She'll be referred to the Center for Living again to complete another 24 days of PT, and then we can finally go home. It won't take 24 days, though, because she'll also have lots of clinic visits and other appointments to make that will take away days from PT. She'll also need to have a stomach wrap (very common post TX), but we haven't been told when or for how long.

Gwyneth needs to meet four criteria to be discharged:

1) Breathing on her own. She's had this one down for several weeks.

2) Weighing in at no less than 2 kilos, or 2000 grams, or 4lbs 6oz. She seems to have plateaued at 1500 grams for the past week, but we're hoping she'll hit 2000 in the next 3-4 weeks.

3) Eating completely from the bottle and none from the feeding tube (that tube in her nose). She is currently eating from about half a bottle about 3-4 times a day (she is fed 8 times a day). This will come as she grows stronger and bigger.

4) No other major issues. So far, so good.

So, we're hoping that Gwyneth will be on her way out within the next month as well.

Anyway, all of that means that we're hoping we could be home close to the first of June.

Thanks.

Nate

ABC 11 (Part 2)

Barbara Gibbs and cameraman came yesterday afternoon to interview us for a follow-up story (see This Post). It was awesome to see and hear Tricia speak on camera...her voice is still so soft and weak that I hope the mic was able to pick it up. And, the nursery let them come in for a few minutes and get some footage of Tricia and Gwyneth together.



Barbara holding a celebrity...haha!



The segment should air sometime in the next few weeks. I'll let you know for sure when I find out.

Thanks!

Nate