Another Newspaper Article

If you're anywhere near Murray, KY today, pick up a copy of today's Murray Ledger & Times to read an article about us and Organ Donation.

If you're like me and have no idea where Murray is, you can read part of the article online.

Thanks!

Nate

Inside

BTW, if you're at Duke this month, pick up a copy of their "Inside" monthly newspaper/magazine to read this quick article about us.

Thanks!

Nate

OBX Sentinel Article

If you're near the OBX today, pick up a copy of today's Sentinel for me and read the article about us...if not, check it out Online (under "Top Stories").

Also (at the Sentinel site), scroll down to "Features" and check out "Looking for money to find a cure" to read more about our upcoming Great Strides Walk in September!

Thanks!

Nate

Interested?

There are a few national media groups (I'm not allowed yet to say who) are interested in our story. I've been asked to find out if any of my blog readers who have changed their minds about organ donation or have decided to become an organ donor for the first time because of reading our story might be interested in sharing their thoughts with a reporter or two.

If that's you, and you are seriously interested in helping us tell our story, please leave a comment under this post (don't email me!) with a brief synopsis of how/why our story has helped you make the decision to become an organ donor, including your previous thoughts/opinions about organ donation.

I don't know for sure if anything will come of this, and I won't be the one making the decision about who might be selected.

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

"Happy Endings"

The News & Observer has updated the latest chapter of our story. Read it Here.

Nate

ABC11 Video Link Up!

Watch the Video Here!

Thanks again to Barbara Gibbs and the rest of the staff! I'm guessing it might air again at 11 if you want to see it "live".

Nate

ABC11 Tonight!

For those of you in the RDU area, tune it to ABC11 at 6pm tonight to watch the next part of our story with Barbara Gibbs. I'll give you the link to the video as soon as they put it up!

Thanks!

Nate

48 Hours

Lots of good things have happened in the past 48 hours....

First, Tricia and Gwyneth got lots of hang time together...Gwyneth enjoys it more than she appears to in this first picture.



Tricia's bronch on Tuesday went well, although it took longer than we had anticipated (about 4 hours altogether with blood labs, x-rays, etc.). The doctor said the initial results (from what he could see through the bronchioscope) looked good. We learned on Wednesday that she is showing no signs of infection or rejection at this point, which is really good news!

And, Tricia talked her doc into removing her trach! She has had the trach since Jan 8, so she is very excited as it will help her breathe a little more easily, help keep her gag reflex under control and possibly allow her to eat and drink more (after another swallow study). It should take a few weeks to heal up, and then she'll be dressing free! Needless to say, she's very happy!


Because we got the blood work and x-rays done on Tuesday, we didn't have to be at clinic all day on Wednesday. Instead, we slept in, I got some cleaning and laundry done, and Tricia was able to go to PT and then her clinic appointment in the late afternoon. At clinic, they removed her pic line from her arm, which makes her pic/IV free for the first time since late December, which, of course, also made her happy.


Gwyneth continues to do well. She is definitely eating more from her bottle. We haven't been given a date for discharge yet, but we know it is getting closer. Tricia should hopefully be released to go home in early June, so we're praying that Gwyneth will be discharged by then as well so we won't have to wait up here for her.


And, I've been told that the next part of our ABC11 story should be airing this Monday! I'll let you know for sure and give you the link when it becomes available. From what I can tell, this should be the best part yet!

Anyway, that's about most of what I can remember that I wanted to tell you.

Thanks!

Nate

April Beach 104 Interview (Part 3)

Listen to Part 1 & Part 2!

Nate

April Beach 104 Interview (Part 2)

Listen to Part 1!

Part 3 of 3 coming tomorrow...

Nate

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. :)

Part 2 of 3 coming tomorrow...

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

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

On Camera

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... :)

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

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...