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

Strike Two

They were able to do a biopsy during the bronch, but it looks like the samples they pulled are useless, so they can't yet determine if it is cancer or something else. This means that Tricia will be scheduled for a surgical biopsy, hopefully no later than the first of next week.

This also means that she's basically in the hospital for literally no reason until then, except, to be discharged, even if we were to stay in Durham, means probably pushing a surgery date further back, which isn't the best option. All they'll do over the next few days is check her vitals and give her her normal meds, which is what we do at home. She won't even have an IV.

All that to say, we're both very bummed. Being in Durham, we've discovered, is incredibly easier and more enjoyable when we're all at "home".

Thanks again for your thoughts and prayers...we'll continue waiting to see why God has us here.

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

Plans

It seems that our story is far from over.

We received a call from Duke this past Wednesday that the Epstein Virus (Mononucleosis) has been found in Tricia's system. This in and of itself is not necessarily a horrible thing, but on Thursday we received another call telling us that there are some growths in Tricia's lungs. These growths could be the first signs of a common type of cancer called Post-Transplant Lymphoproliferative Disorder that develops in post-transplant patients, brought on by the mono virus because of the immunosuppressant drugs Tricia is now taking.

We'll be driving to Duke early Tuesday (tomorrow) morning to get a clinic visit in for Gwyneth, who has been breathing a little heavy and fast the past few days. It does not appear to be affecting her in any way, but it's something that needs to be checked out just in case.

Tricia has a PET Scan early Wednesday morning. She will probably also have a biopsy (where they'll remove a small part of her lungs). Hopefully this can be done via a bronchoscope. If not, they may need to perform a surgical biopsy. She'll most likely be admitted as an in-patient on Wednesday as well, hopefully for no more than a few days.

They should have a diagnosis within 24 hours of the biopsy.

If she indeed is diagnosed with PTLD, they will consult their oncology specialists to take over administering the Rituximab, which it is generally given weekly for a month or so.

It could all just be a fungus infection, but it appears pretty suspicious for the PTLD.

This is not something we were aware could happen (not that anything really surprises us anymore), and to be honest, we really don't know much about it or what could happen from here. The idea of going back to Duke and being in the hospital is not something that we really want to think about right now, as it really messes with our plans. We're not sure how long we'll be in Durham, but we're hoping we'll be back within a week.

So, once again, we find ourselves in an unfamiliar, and very scary place. But, if we have learned anything during this incredible journey, we’ve learned to simply trust God.

When I am at my weakest, He makes His strength most evident.

I'm believing more and more that, after this part of our journey is over, God will still be Who He is, no matter the outcome. My plans are only worth anything if they are God's plans, and thankfully, His plans are always perfect.

Jeremiah 29:11 (The Message)

I'll show up and take care of you as I promised
and bring you back home.
I know what I'm doing.
I have it all planned out -
plans to take care of you,
not abandon you,
plans to give you the future you hope for.

We have no reason to doubt that God is still in control. Thanks for your thoughts and prayers this week. I'll let you know when we know more about both of the girls.

Thanks!

Nate

Long Day

Today was very, very long.

But, if all goes as planned, it will be our last day in Durham.

We should be home tomorrow.

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

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

Waiting

I had a little fun while I waited for Tricia to be done with PT today...



Hopefully, Gwyneth will be making faces with me in the car, waiting for mommy, by the end of this week!

BTW, I've added some new pics on my Photo Blog...some pics of downtown Durham and a few, beautiful new pics of my bride.

Nate

Yesterday

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

Nate

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

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

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

Another Amazing Transplant Story

You seriously need to check out this story about tragic death and an incredible gift.

This is happening here locally in Durham and began the same day Tricia got her transplant call. The back story is that two young brothers were killed last week when they ran out into traffic.

Make sure you click the first link first, watch the video/read the story, and then click the second link.

Watch This First

Watch This Second

Organ donation is such an incredible way to celebrate the life and honor the death of a loved one.

Thanks.

Nate

Friday Evening Update

Tricia has had a very long day. I spent about 45 minutes with her over two visits this morning. Around noon, they wheeled her down to radiology to replace her feeding tube. There was a minor complication, which made her trip a little longer, but it was taken care of without any major issues.

Her nurse (my new favorite nurse, BTW) actually took my plea to have radiology place the pic line seriously, and made sure that they took the time to do it while they were down there. I told her that she is the first person who has taken us seriously (about this issue) AND made sure that other people took us seriously...we are very thankful (and again, we LOVE the Duke staff...can't figure out why a few don't think we do...).

Tricia arrived back in her room around 5, and by the time I made it a little while later, she was awake as if nothing had happened and actually looked a little more chipper and alert. I spent about an hour with her this evening, and should be back again at 8 after a short visit with Gwyneth.

The short-term memory loss is providing some fun times, to say the least. Tricia literally forgets almost everything within about two minutes. She does remember now that we've told her she had her transplant, but I've told her about 20 times that it was on my birthday, and every time she gets the biggest smile on her face (because it's the first time she's hearing it, again) and whispers, "Happy Birthday...I love you!"...talk about melting my heart...

She said I could take her pic and post it on the blog, so look for that tomorrow morning.

One more thing, before I forget. I spoke with our friend, Yonat Shimron of The News & Observer (remember This Post?) today for a while, and she'll be updating our story in tomorrow's (April 4) paper! I seriously doubt it will be on the front page again, but I'll let you know if it's online...she's told me that she is still receiving emails and phone calls asking for updates about us. We continue to be humbled with how God is using our story for so many good things.

Thanks!

Nate

New Pics

Just thought I'd let you know that I posted some new pics of the Duke Gardens and a few other things over at my Photo Blog.

Nate

Front Page!

Click Here to read the article online (make sure you click on "Photo Gallery" as well)!

Our story made the front page of today's Sunday edition of The News & Observer newspaper here in Raleigh/Durham!

Yonat Shimron (writer) and Corey Lowenstein (photographer) did an incredibly outsanding job of capturing our story in words and photos (respectively), and we thank them for the hours they spent with us (and, obviously, many more hours spent in research, composition and editing) over the past few weeks.

We are humbled to have this opportunity to share our story, and we pray that God will use this and other opportunities to show Himself and bring our passion for awareness of and support for Cystic Fibrosis, Organ Donation and Premature Birth to the minds and hearts of even more compassionate people.

Thank you!

Nate

April 19

Exactly one month from today, I'll be making Great Strides for CF here on the Duke University campus. If you can, consider coming and hanging out with me and thousands of others as we enjoy some free food, games, a raffle and lots of other fun activities! Registration officially begins at 9am, but feel free to come out any time that morning or early afternoon. I'll be the one wearing the orange shoes.

In fact, there a several Great Stride Walks taking place in the month of April all over the country. Click Here to find the walk nearest you!

Nate

2LBS!!!

Gwyneth has finally reached 2lbs! Hopefully she'll keep growing and not look back!

She also had another eye exam today, which looked about the same, so they'll give her another one next Tuesday. This is good news that the condition has not grown any worse. She continues to thrive on the nasal cannula, and she is eating more and more almost every day.

Tricia is about the same as she was this morning. Thank you for your prayers.

The bake sale went great. I know that we made over $500, and I'm thinking it was close to $600, which is good for a 4 hour bake sale! A dude named Chris who reads the blog stopped by just to hang out for a bit, which was cool. Unless something else comes up, I'll also be helping with a raffle and talking about CF here at the hospital on Friday as well. I'll let you know where if anyone wants to swing by and say hey and help us out.

Last week, Yonat Shimron, the religious reporter for The News & Observer here in Raleigh came by to interview us for an article she's writing for Easter. Corey, a photographer for the paper came by today. The article should appear in this Sunday's paper, and I'll post the online link for those of you who aren't in the area.

The TV interview is coming together and should air soon...I'll keep you posted!

Thanks!

Nate

Sweet!

Lots of sweets. Here I am (still here if you come by!)


Nate

Top O' The Morning!

Read with your best Irish accent!

In Durham lives a lad named Nate
Who's wife for new lungs does wait
Their bless'ed white rose
with blond hair and butt'n nose
amazes all 'spite wee size and weight

You have until 8pm (EST) tonight to come up with your own CFHusband limerick! Keep it G rated and CFHusband themed (or I'll delete it). Or, write one about yourself and post it on your own blog!

Tricia decides who's is the "best" and will give the winner a cyber high five!

Nate