Thursday, July 31, 2008

Inspire Pharmaceuticals

The annual CFF Meeting that Tricia and I attended last week took place at Inspire Pharmaceuticals, Inc. which recently initiated a second Phase 3 clinical trial evaluating denufosol tetrasodium inhalation solution for the treatment of Cystic Fibrosis. A few of the Inspire doctors/scientists spent several minutes explaining this new drug.

The basic issue that CF presents in the lungs is that it causes the thin layer of hydration that keeps normal lungs wet to dry up and become thick and sticky. Normally, this mucus is such that it is able to catch most dust, germs and other foreign stuff in your lungs and quickly move it out of your body. With CF, the mucus is so thick that most of what you breathe in never makes it back out. The mucus traps a lot of junk, and slowly becomes thicker and thicker. This causes a few major problems (and, understand that the following is an extremely simplistic way of explaining...only because it's ultimately too complicated for my brain to comprehend):

1) The thick mucus traps germs and bugs and bacteria and fungus which, if given enough time, can result in some really nasty/harmful sickness. This is why most CFer's become very sick fairly often.

2) The mucus also slowly begins to block the lungs natural ability to both absorb the O2 and get rid of the CO2 from the air being breathed in. This is why most CFer's have difficulty breathing.

Denufosol enhances the hydration and clearance of mucus from the lungs by helping chloride move across the cell membranes of the lungs. This new trial, named TIGER-2 (Transport of Ions to Generate Epithelial Rehydration), is enrolling 350 people with CF aged 5 years and older in the United States and Canada and at additional international sites as the trial proceeds. The trial aims to demonstrate improved lung function and decreased pulmonary exacerbations, and measure the need for other CF medications and quality of life.

So far, the results are extremely promising!

Inspire is one of the few pharmaceutical companies in the US that was organized to specifically develop drugs for Cystic Fibrosis. The CFF has been partnering with Inspire since it's beginning, and is one of the companies that receives funding from the CFF, which, of course, comes from people like you who generously give to help find a cure.

Inspire explained that, after Denufosol hits the market (assuming the trials go well and it is approved for manufacturing and distribution), their next major goal is to find the cure. But, the only way that they'll ever get that far is with additional financial support from the people who give to the CFF.

Please, if you haven't yet, consider joining us as we search for a cure by Donating to the Cystic Fibrosis Foundation.



Wednesday, July 30, 2008

Duke Waiting Room

We thought you might like a brief view of what our life is like as we putter around Duke for appointments and such. This is the fun part of it...


A Piece Of Us: 4th Of July '07

This was a great Independence Day...lots of family and friends over at my sister's house for a cookout, and then walked down to the beach to watch the fireworks. This is my sisters' husbands and my uncle in the first clip, and then Tricia on the ground with Meka and a much larger, older pug (I think this was Meka's first experience with another pug since leaving her litter). Enjoy!

Check out the other "Piece of Us" videos Here!


Tuesday, July 29, 2008



So True...

...every night...



Start 'Em Early


Monday, July 28, 2008

Monday, Monday...

Today could be a busy day. I was up and down to the church at 8am to lead worship with the band for a bunch of youthy people who are doing some outreach stuff on the beach today through Thursday...

...then, I stopped by our mechanic (Luke's Auto in Kill Devil Hills if you ever need somebody down here) to have him check on our AC, which may have a freon leak somewhere. Everything looks good....

...which means, we'll be heading to Virginia today to run some errands that we didn't get done last week in Durham (because we spent all of our time in the hospital). Hopefully, we'll have some time to visit with a few friends as well...

...but only after we have a visit from Child Developmental Services who will be working with Gwyneth (and her parents) as she catches back up to the growth/developmental curve over the next year or so.

BTW, Tricia has been feeling very tired the past few days, probably because of the chemo. One of the side effects is fatigue. Other than this and feeling very strange for a few hours on Saturday, she has been doing fairly well so far, BUT, we were told that day ten, post-treatment (which would be later this week) can often be the worst. We're hoping that it won't be too bad.

BTWW, I've got new pics to show, but haven't had time to get them uploaded, but hopefully soon. Thanks!


Sunday, July 27, 2008


July has been a great month for us! Lots of fun times with family and friends, and we're finally feeling like we're moving toward a more "normal" life. There are still a few days left in this month, but we're really looking forward to August, as it's working out to be a busy and exciting month for us.

There are a few incredibly exciting things going on that I can't yet tell you about, yet (I promise to tell you as soon as I am allowed...don't even bother guessing, because I can almost guarantee it's not what you might think), but there are a few things that I can let you in on...

> August marks eight years since Tricia and I met on the deck of our old church building. I think there may be a few romantical things going down at some point...

> August 9 brings around our second annual Pancake Dinner at Grits Grill!!! We're super stoked.

> August 13 marks exactly one month until our Great Strides Walk!!! Again, we're stoked!

> Sometime in the next few days, I'll be telling you about a super fun and very meaningful fund-raiser that I'll be doing this coming week for the Leukemia & Lymphoma Society! (hint: it involves something that will be live on the internet!) So, make sure you check back in over the next few days to find out how you can participate!



Saturday, July 26, 2008

Family Photo Shoot

I finally got some time in last night to go through and edit the pics from our family shoot last week. Here are a few of my favorites!

There are a lot more over on My Photo Blog!


Friday, July 25, 2008

Home Again

We got home around midnight last night. Long day, but never a bad day when you're discharged from the hospital. I'm working at home today while Tricia is out with her mom and brother and Gwyneth house hunting.

On our way home, we stopped to attend the annual Cystic Fibrosis Foundation meeting in Raleigh. We were invited to attend because they were going to present Tricia and I with an award...our Great Strides Walk last year was the highest earning, first-year walk of '07 in NC ($32,000). We appreciate the recognition, and, of course, say "thank you!" to everyone who helped in any way last year (because they deserve most of the credit)!

Anyway, the meeting took place at the Inspire (a company that focuses on developing new drugs for CF) headquarters. They have some incredibly exciting news about a new drug that is in the testing phase (I'll explain more later).

Anyway, we have a lot going on this weekend, and I'll try to update when I can. Tricia is feeling good, taking her nausea meds on a regular basis. And, Gwyneth slept better last night than she had the two previous nights, which gave me chance to do some catching up myself.



Thursday, July 24, 2008

Tricia/Gwyneth Update

Forget nausea and pain meds...if only everyone had a Gwyneth to snuggle with during chemo, the world would be a much happier place.

Tricia did very well with her first round, although they say that some the side effects can present themselves over the next few weeks. She did hurl this morning, but that was after she had received sedation and pain meds of having another portacath placed this morning (the port will minimize the risk of infection during the chemotherapy treatments over the next few may remember that she had a port, which was removed shortly before her transplant).

Also, she decided not to have her G J feeding tube removed. Chemo can often affect the appetite, and with her CF and other issues, Tricia already has a difficult enough time as it is maintaining her weight, so the feeding tube will be a safety net in case she doesn't feel like eating at times.

And, Tricia was seen by an ENT doctor, who examined her throat and told us that her left vocal chord is paralyzed from the transplant surgery (common with heart/lung transplants). Tricia's voice has been weak and raspy since the surgery because one of her vocal chords is slightly out of place, which means it is not vibrating the way it should be. I explain more about the options to "fix" this later.

Also, the artery in Gwyneth's heart is still open, but it normally takes a year or two for it to close if it doesn't close within a few days after a full-term birth. If it never closes, they'll fix it with a minor surgery when she's 4-5 years old. We'll have a yearly appointment to check on it, and it should not cause any issues.

Anyway, we're sitting here, hoping that Tricia will be released in time for us to head home this evening (especially since I packed up and checked out of our hotel this morning).



Wednesday, July 23, 2008

Change A Thing

Exactly one year ago, Tricia and I were completing her first day of the week-long transplant evaluation process here at goes without saying, but only God knew what the next 366 days would bring for us.

I was thinking back on the entire year this morning, and I truly cannot even fathom all that Tricia has gone through, physically, emotionally, mentally...what I've shared on the blog is only the tip of the iceberg. I thought about making a list, but it would seriously take up too much's simply mind boggling. And, the vast majority of things that she has been through, I'm pretty sure I could never handle myself.

But, even Tricia would tell you, without hesitation, that it is only by the grace and protection of God that she has survived this past year. The perfect timing and exact detail of everything (and I'm sure there is so much that even we have not seen) cannot be explained any other way.

We have no doubt that, anywhere but Duke, even just a few days one way with several different events, anyone else but everyone we've come into contact with, and things would not have turned out the same. And, that includes all of the stuff that seems like nothing but bad at the time. To change any part of the journey would mean to change the entire journey.

We've learned a lot. About our love for each other. About the support our families and friends. About the inspirational kindness of total strangers. About faith, hope and miracles. About the mercy and grace of God.

We would never hope to do it again...but we wouldn't change a thing.



Cancer Treatment

Tricia will (hopefully) begin her chemo within the next hour or so. If they wait too late today, they're going to want to keep her until Friday, which wouldn't be cool. They'll give the rituximab (the drug she has already been receiving the past few weeks) first, and then three other drugs.

The rituximab should take about 2-3 hours, and we already know that Tricia should not have any adverse reaction to that. The other three drugs may leave her nausiated, with headaches, and with way to know until tonight. If she does feel fatigued, it may be, at least, a few days before she'll be feeling better.

More than likely, she'll start to lose most of her hair within the first two weeks (more on this later).

We're both feeling much better today. Tricia would have slept well, except a few of her neighbors spent much of the night yelling (normal life in the hospital). I would have slept well, except my roommate decided that she wanted to stay up until 11pm, and then have some play time between 3 and 5am...

Thank you for your encouraging words and continue prayer and kind thoughts. They sincerely do mean a great deal to us, and I spend time every day reading every word (of the "encouraging" comments).

As a synopsis/clarification (as several people have asked), Read This to learn more about Tricia's original (and continued) Post-Transplant Lymphoma Disorder diagnosis. This kind of cancer shows up in about 10% of transplant patients and is a result of several factors, including her immunosuppressant drugs and the presence of the Epstein Barr Virus. In Tricia's case, the lymphoma has presented itself in the lungs. It is NOT something that was in the donor lungs before they were given to Tricia.



Gwyneth Rose Update

Gwyneth was seen at the Special Infant Care Clinic yesterday and then by her pulmonologist today. Both visits went very well.

Her weight gain has been slow since our last visit, so a few changes have been made to try to stimulate growth. However, the pulmonologist explained today that, they expect her to be in the normal growth curve (for her adjusted age) within a year, which is very good.

Her lungs continue to look and sound great. In fact, they're dropping one of the diuretics that she has been on for several months (diuretics help to keep the lungs clear of fluids). She'll continue to stay on the same amount of O2, but again, simply to help her body spend less energy eating, sleeping, playing, etc. and more energy growing.

She has an appointment tomorrow with the cardiologist to determine if the ductus arteriosus artery at her heart (which normally closes within a few days after a full-term birth) has closed as it should. Very rarely does it not close, so we're not worried.

Anyway, that's about it. Everyone seemed pleased for the most part, and she is definitely more comfortable breathing and eating. Hopefully, we're on our way to losing all of the meds and O2...



Tuesday, July 22, 2008

Life Just Got Complicated might be thinking that our life was already complicated. Well, not to least not until now...

Tricia's lymphoma in her lungs did not respond well to the meds over the past five weeks. In fact, some of the growths are bigger, and there are a few new growths. Only two of the growths are smaller, and none have gone away. That alone was pretty disappointing.

Next, they've decided to keep Tricia overnight until they can come up with a new game plan. Another disappointment (Gwyneth and I will be partying at the hotel by ourselves tonight).

This evening, we met with the oncologist (cancer doctor), who explained that the next step is R plus CHOP. I've been explaining to you that the chemo Tricia had been receiving was not the heavy duty stuff...CHOP is. CHOP is the stuff that you hear about that comes with a lot of potential side affects...nausea, severe headaches, risk of leukemia, hair loss, etc.

Tricia will receive her first treatment tomorrow. If all goes well, she should be released on Thursday (we were planning on heading home Thursday anyway). She'll received her second treatment in three weeks here at Duke. A few weeks after that second treatment, they'll reevaluate to determine if the cancer is responding as hoped for. If so, she'll receive four additional treatments every three weeks, for a total of six over the next eighteen weeks.

If, after the first two treatments, her cancer is not responding, Tricia is in serious trouble.

Each treatment lasts several hours, and immediate side affects include the nausea, headaches, etc. Because of Tricia's other current health issues and medications (which I'll discuss at a later time), this entire process is a lot trickier than it normally would be if she was only facing cancer (not to diminish anyone who is "only" facing cancer...that alone is nothing to laugh at).

Needless to say, we're both very bummed tonight. Tomorrow is a new day, and I'm sure we'll be more optimistic, but tonight we're very discouraged. We continue to trust God, believing that, regardless of what lies ahead over the next few months, He is in control and knows what is best for us, but we're feeling rather beat up.

Blessed be the Lord
day after day he carries us along.
He's our Savior, our God, oh yes!
He's God-for-us,
He's God-who-saves-us.
Lord God knows all
death's ins and outs.

Psalm 68:19, 20 (The Message)


BTW...Gwyneth had an appointment today and has another tomorrow...I'll update you on her status later tomorrow. Thanks.

At Duke

Tricia's getting her CT scan right now, which takes just a few minutes. Gwyneth is getting her early morning nap. I'm getting caught up with emails.


Monday, July 21, 2008

Back To Duke

Late this afternoon, we'll be driving back to Durham/Duke for a few much anticipated appointments for both Tricia and Gwyneth.

Tricia will be having her follow up appointments with the cancer team to discover if the past four rounds of chemo have been effective. The expectation has been that the treatments will have wiped the lymphoma out of her system, so we're keeping our hopes up. She'll also be seen by the transplant team again, and we're also hopeful for continued good news. What we're unsure of is how the cancer and post-transplant issues will continue to balance themselves, particularly with her meds and the efforts to ward off rejection. Some good news...Tricia has been told that she'll have her feeding tube, which she has had (and which has been incredibly helpful) for the past 18 months, removed...she is very excited.

Gwyneth will be seen again by the special infant care doctors. I have been very optimistic over the past few weeks, as it appears to my untrained eyes that her breathing and development seem to be progressing very nicely. She continues to be on and off the oxygen as needed, but I can really tell a noticeable difference in her work of breathing. She is also eating more and more, with greater ease and stamina, and she is beginning to discover that she can suck/lick on her hands and fingers if she can hold them still in front of her mouth for long enough.

All of this will be taking place from Tuesday to Thursday, and, without any major surprises, we should be back home by Thursday night. We'll be making good use of the time outside of the clinics to get some things done in the "big city" that we can't do on the OBX, and we hope to see a few friends as well.

BTW, I simply have not had any time to work on pics from the other evening, but I promise they'll be on there way in the next day or so!



Saturday, July 19, 2008

Lawrenson Family Pics Preview

I haven't had time to look through them all and edit, but here are a few pics from last night's session on the beach...

More to come later!


Friday, July 18, 2008

A Gentle Reminder (again)

There is a person (or maybe a few people) who continually comment on this blog with the sole goal of stirring up trouble. Most of the time, this person's comments revolve around ignorant statements/questions concerning our finances, crude statements/questions concerning my wife and daughter, and/or unfounded statements concerning my character. This person chooses to remain anonymous, and I am certain that it is somebody who we don't know, because they obviously don't know us. I (and a few other people who help me) spend time every day monitoring comments, and usually I am able to delete these comments before most, if any people read them.

I really couldn't care less about this person's comments (it's been going on for long enough that I simply feel sorry for this person), but I don't like to see my other readers getting upset or actually thinking that this person and his/her comments are anything more than an attempt to be a disgusting jerk. I also don't want my other readers responding to this person's comments, which is why I also delete any comments that do respond to this person.

So, if you see one of these comments, PLEASE, just realize that it will be deleted soon, and that this person doesn't spend any time actually reading any responses that you might want to post. If I can ignore this person and their comments and not get upset, so can you! You'll save me some time and energy by simply choosing the higher road.

I hope all of that is clear.

Thanks so much to the thousands who are always encouraging and supportive of me and my family!


Clinical Trials

Tricia has participated in dozens of trials and studies, and will continue to do so for as long as possible. Read more about that Here. If you are a CFer, one of the biggest reasons you have the drugs and technology at your disposal to help you deal with your CF is because other CFers were willing to participate in clinical trials and studies. Please, consider the possibility.

Read More about the work that Boomer Esaison is doing to find a cure for CF!



House Hunting

This afternoon, Tricia and I FINALLY take our first house hunting adventure with a real estate agent. Fortunately, having worked as an office assistant for a real estate agent a few years ago, Tricia knows where to look on the internet to find all of the listings in our area (I wouldn't have a clue). We're not expecting to find something on our first day, but we're still hopeful.

And, this evening, my family will be out on the beach for some family pics. My sister, Sarah and her husband, Terry are in town for the first time since moving to FL just a few days after Gwyneth was born (this is the first time they've seen both Tricia awake and Gwyneth out of her incubator), so we're taking advantage to get some pics of all nine of us (to think it was just six a little over a year ago...).

BTW, several people commented about the decorations and food for the shower. All courtesy of my mom's business, The Embellishers. If you're ever looking for a party/event planner/decorator on the OBX, these ladies have it going on!


Thursday, July 17, 2008

Baby Shower Pics

Here are a few pics of Gwyneth's shower. 50 points to the first person who can guess the theme (it's kinda hard to figure out...). ;)

Thanks to everyone who came and shared their lives with us. Tricia had a great time!!! A special thanks to Rachel and Bethany for hosting, and for my mom and Brenda for decorating!

BTW, Gwyneth and I had fun playing the Wii at my brother-in-law's house!


(Bump) Like A Virus

This was originally posted in January. I'm still finding new blogs/websites linking to ours nearly every day, and I'm sure I've missed a bunch...THANK YOU so much for sharing our part of God's story with others! No need to ask my permission to link our blog or any of my posts...we appreciate your help in raising awareness about the issues we are passionate about!

Just as many of you are checking in with us several a day, I spend several minutes each week seeking out any and all blogs and websites that mention our story, posting a simple "Thank you!" on every one that allows. The number is in the thousands by now...which I find absolutely amazing...and those are just the ones that I've been able to find.

I'm doing all I can to document and save everything I write and read about this story. Your comments, your emails, your cards and letters and packages.

Now, I'd like to devote this post to asking those of you who have blogged about our story to simply leave a comment with your web/blog address (we'll keep it short and uncluttered). It would mean the world to me, it would mean easy access for when Tricia and others want to read more, and it would mean some serious traffic for you.

If you know of a third party website (like a website chat room) that is talking about us, and do not see it posted yet, feel free to do post. Please, only comment on this post if you have your own link to share, or a third party website link.

Thank you!


Wednesday, July 16, 2008

Pic of the Day


Confessions of a Preemie Parent (Part 2)

(Part 1)

One of the most difficult things about being a preemie parent is the absence/delay of all of the big milestones of the first few days and weeks. It was nearly a week before I could touch Gwyneth without gloves on, nearly a month before I held her, three months before I could feed her from a bottle, etc. The NICU smells nothing like what most people think a new baby should smell like. Not to mention all of the developmental milestones. In fact, neither Tricia nor I were even really there for Gwyneth's birth. I was in a waiting room, and Tricia was sedated.

And, I can't even begin to imagine how it was for Tricia. That was actually one of the greatest frustrations for me during those months in the hospital. Because of Tricia's own health, she behaved and reacted to many things differently than I would have expected. Without going into great detail, because Tricia was so sick, and because she had so much less contact with Gwyneth than I did, it was even harder for her to connect with the idea and emotions of having a daughter. Gwyneth was nearly a month old by the time she even saw her, and nearly two months old before she could hold her. Even as her husband, it was hard, and really impossible at times, for me to understand what she was going through.

And, it became even more difficult when people would comment about their expectations of our thoughts and behaviors. "Tricia must have been so excited about...", or "You both must be so happy about..." became hard for me to hear and read, and made Tricia actually feel guilty if she heard/read them. Well meaning people thought they understood, but really had no idea. When we had guests visit at the hospital, I would often have to ask them, before going into Tricia's room, to not talk about the baby and the pregnancy unless Tricia brought it up. After the first few weeks (after Gwyneth's birth), I banned Tricia from reading comments until I could censor them, and I can't tell you how many of those comments I deleted, not because they were mean or insensitive, but simply because we couldn't emotionally deal with reading them.

We knew that, under normal circumstances, we would be acting and thinking the way most people would have expected. We would feel as we should the first time we both saw her, held her, took her home... But, we obviously weren't under normal circumstances, and it seemed that the only people who really understood that part of the picture were our family/friends and other families who have been through similar experiences.

I had to continually tell myself, "If I can't even understand some of the things Tricia is dealing with, I can't expect people to understand what I'm going through." And, I think that's one of the most difficult parts of these kinds of journeys...the knowledge that, while you're certainly not alone, most people just can't understand.

But, through the blog, so many have encouraged us by sharing their premature birth stories with us. And, that, in turn, is one of the primary reasons we have chosen to share our story. Most likely, somebody, if not several people reading these words right now will become parents of a premature baby at some point in the future. Being a preemie parent brings a lot of unnatural feelings and emotions. We knew very little about premature babies or what to expect as preemie parents before this experience, but we've learned a lot. And, we hope, that we can help others in the same way that we have been helped.



(Bump) In Lieu Of Gifts

I thought today would be a good day to bump this. I probably shouldn't be, but I AM amazed that people actually took me up on these alternative ideas. Thank you so much for your generosity to the CFF and pregnancy centers in Tricia and Gwyneth's honor!!!

I've received several emails and comments over the past few days and weeks asking us where we have registered for baby stuff. While we are incredibly humbled and appreciative of the generosity of total strangers, to be completely honest, we'd rather not post all of that info on the blog or give it out to too many people for two reasons:

1) We're scared if we did give it out to anyone who asked for it there wouldn't be anything left for any of our family and friends to get us. We've yet to have an actual baby shower, and I've heard from so many friends and family who are very excited about participating in one when we get home. Based on the generosity we've already received, I have no doubt that you crazy people (and, I say that fondly) would give us all we need and more, and that's not really what we want out of all of this. Again, as much as we genuinely appreciate the gifts we have received (and I'm sure will continue to receive), we would like to experience some normalcy in this area of our life and are looking forward to a real shower. :)

2) What we really want, as I've mentioned several times before, is to turn our blessing into ways that can bless others. If you are one of the people who really want to give a baby gift (and if not, that's totally cool because we've never expected anything out of this blogging experience), consider the following options in honor of Gwyneth and/or Tricia:

> Donate to the Cystic Fibrosis Foundation and help us find new drugs and treatments and possibly a cure that will benifit thousands of CFers across the world. I have nearly met my personal goal of $10,000 (almost entirely with your help!), and have decided to bump my goal up to $15,000 since I have until September 13 to accomplish it. Every penny makes a difference!

> Contact your local Crisis Pregnancy Center and/or hospital and inquire how you can donate some new, baby items. I can almost guarantee that they would more than welcome your donation and that they know of plenty of families who are in much greater need than we find ourselves in.

All of this is NOT to say if you have already sent us a gift that we don't greatly appreciate it...we DO! You have made our lives so much easier and more enjoyable now and in years to come.

We truly appreciate that some people who have already given to the CFF are now asking for ways to give in a more personal way...and, we can honestly say that there could be nothing more personal to us than if you would consider giving to others because of our story.



(Bump) Baby Shower!

This is mostly an FYI for our friends and family, but I thought you might like to know as well.

For those of you who would come if you could, but can't, Read This!



Tuesday, July 15, 2008

CFHusband Contest 04 - Team Pattysue T-Shirt Design

Every year, for our Great Strides Walk for Cystic Fibrosis, we create a "Team Pattysue" t-shirt for everyone who is participating with our team. "Team Pattysue" is the name of our team of friends and family who help us raise money for the Cystic Fibrosis Foundation in honor of Tricia. The first few years, I designed the shirt, and then last year, a good friend of mine designed a really sweet shirt for us.

This year, we want to give our readers an opportunity to design a t-shirt for our team! We know there are a lot of creative people who read our blog, and we want to give you the opportunity to help us out in a fun and memorable way. Our shirts are always a hit, and almost every day, I see a friend or family member wearing one of our shirts from years past.

There are a few basic but important rules that we ask you to follow:

1) All submissions must be illustrator/.eps type files using software like Illustrator, InDesign, etc. When we order the t-shirts, the printing company will need access to one of these files, NOT something as simple as a .jpg or .png file. If you're not sure what all of this means, GOOGLE it!

2) All submissions must use ONLY the following text (subject to change):

Team Pattysue

CF Walk '08 or Cystic Fibrosis Walk '08

All submissions must be EMAILED to Nate no later than August 1, 2008.

4) One person may enter as many submissions as they'd like.

Tricia will decide the winner in early August, and we'll need about 4-5 weeks to send the design in and received the shirts in time for the walk on September 13. The winner will receive a HUGE "thank you" on the blog, as well as a special gift from Tricia, Gwyneth and I.

I'll post pics of our shirts from past years so that you can see what we like. A few tips to keep in mind:

1) Keep it simple. We want people to see the shirt and read and understand what it says without getting too distracted by an overload of design/art work.

2) Keep it original. Make the design your own, without "borrowing" any pre-fab designs from other people.

3) Stay away from bright colors like neons.

4) Stay away from either white or black shirts/background colors. And stick to ONE color for the text/design. Shirts become much more expensive when you use multiple print colors.

5) Utilize both the front and back of the shirt.

Last thing...even if you can't attend the walk, but you would love to receive your own "Team Pattysue" t-shirt this year, all you have to do is:

1) Join Team Pattysue (fill out the info on this link and you will automatically have joined our team)

2) Raise at least $250 in donations from other people (not including money you donated yourself) by September 13, 2008 (all money raised goes directly to the Cystic Fibrosis Foundation).

(If you need help setting up your online account, it's better to contact CFF directly than to try to email me.)

That's about it! We're looking forward to seeing what you can do. Thanks in advance for helping us raise awareness and support for Cystic Fibrosis!!!


Round 4

Tricia's at her fourth round of chemo right now. As I've mentioned before, she has experienced no side-effects at all from the drug. Everyone reacts differently, but this is also due to the fact that she has a weakened immune system...side-effects from drugs are typically caused by your own body reacting to a strong, foreign substance...Tricia's body is probably just too drugged up to care.

Anyway, we travel back to Duke early next week for appointments for both of the girls. Hopefully we'll have great reports on both of them! In the meantime, my mom is busy getting ready for the shower, while both Tricia and I have family coming into town. We're looking forward to a fun week.



Monday, July 14, 2008


It's too bad she has to outgrow these clothes so fast...

Hopefully she won't outgrow her silly faces...


I'm Not Joking...It's Closer Than Yesterday!

October 31, 2008

Saturday, July 12, 2008

More Fun

After Gwyneth got back from her eye exam, she and I hung out for a while. She's becoming more fun to play with, as she's spending more time being social. She's smiling more and more each day, and she's even becoming ticklish, which is a lot of fun.

Meka was feeling a little left out...

So we invited her to join us...she still didn't look too happy...

BTW, Gwyneth's eye appointment went well. The doctor told us, again, that she will probably be mildly nearsighted and need glasses, which is an incredibly minor issue considering all that she has been through. If you look at the pics above, you'll see that her pupils are still dilated from the eye exam.



Friday, July 11, 2008

Confessions of a Preemie Parent (Part 1)

I've been meaning to write these posts for a while. I have a feeling they will shed some light on a lot of the smaller details of our story over the past several months. Through the wrong perspective, what you're about to read might come across as something of a sob story, but that is not my intention. I simply want to give you a clearer picture of what early life as a preemie parent feels, sounds, looks like so that you might better understand our story.

Of course, every premature experience is different, and from what I can gather, because of several factors, our experience was different in many ways from most. But, my guess is, most parents of former preemies will be familiar with a lot of what I'm about to tell you.

Having a premature baby, especially a micro-preemie is unlike any other new-parent experience. There is no way that I can fully describe to you so that you could completely understand, and there's certainly no way for anyone to prepare you for such an experience.

With a normal, healthy, full-term birth (in the US), usually the mother is holding her baby within seconds of delivery, the father is not too far behind, and both mom and child are home together within a few days. It used to be that the baby was taken to a nursery and kept apart from the parents for much of the first few days, but now most newborns are allowed to be kept in the same hospital room with both parents until they are released to go home. This, as they say, is how God created everything to work in a perfect world.

Most people who have never experienced being parents/family of a premature baby are still able to recognize and even empathize with the feelings of fear and frustration involving an extended stay of a newborn child in a hospital. Certainly, most parents can especially imagine what it might feel like to have a critically ill baby and to not be able to take your newborn home within the first few days.

What most people are unable to relate to, however, is the stunted sense of bonding with your newborn that comes with ICU's, incubators, and fragile bodies. For me, and even more so for Tricia, the feeling and realization that, "this is OUR baby girl" has been a very slow but certain process.

Because I have never experienced a normal, healthy pregnancy and birth, I can't really compare our experience. But, from what I have been told, the bonding process, while a lifetime in the making for any parent/child, is usually fast and secure when you're able to hold, feed, clothe, etc. your newborn within days, if not hours of birth.

My first experience with my new daughter was spent in a small, very warm and muggy ICU room. To get to the room, I needed to check in at the front desk in the waiting room. The nurse in the back had to give her OK. I had to wash my arms from the elbows down, making sure I wasn't wearing any jewelery on my hands and wrists. I had to put a blue, cotton gown on. I had to be sure that I turned my cell phone off. Over the next 4+ months, I had to do all of this every time, before even entering the NICU.

Once I arrived in the hallway outside of the room where Gwyneth spent her first week, I had to exchange my blue gown for a bright, yellow gown. I washed my hands again before putting on a pair of gloves, all the while trying to stay out of the way of the nurse (who was very friendly and capable) I had just met.

My first view of Gwyneth was, of course, through the glass of her incubator. She was already hooked up to what seemed like a hundred different wires and tubes. As I've mentioned before, the wires and tubes didn't bother me as it was something I was used to seeing with Tricia, but it is still an abnormal experience for any new parent. The ultraviolet light was on, and she had a small, black mask over her eyes She was lying on a blanket, naked except for the preemie diaper which was easily two times too big for her, very wrinkly and very red. Several machines were beeping, keeping close track of every vital sign imaginable.

The nurse was busy attending to all of the tubes and wires, changing a diaper and watching the monitors closely. The incubator had to be kept very warm and very humid, making it difficult to get a good view of Gwyneth through the condensation on the inside of the glass.

The only contact I was allowed those first few days was to gently touch her with my gloved hands.

All of these things basically left me with a feeling of detachment. I knew in my head that this was my daughter, but without being able to touch and hold her and do all of the other things that I would have expected under normal circumstances, it was hard to have that same knowledge in my heart. It almost felt as if I was simply looking at somebody else's baby, or even looking at a strange animal through a pet-store window. There was certainly the joy and pride of being a father, but it was very subdued...not so much because of her or her mother's health, but because I simply could not do the fatherly things that my natural instincts were telling me I should be doing.

The only thing that I could really do that felt semi-normal was to take a lot of pictures. Here is the video I posted at the end of that first day.

("Miracle" by the Foo Fighters)

I'll post more about this later. For now, if you want to get a better idea of what those first few days were like, go back and read some of my posts from early January.



Eye Doctor

My mom and Tricia and Gwyneth are on their way to Norfolk, VA to, among other things, take Gwyneth to the eye doctor to check on her retinopathy of prematurity. We're hoping that everything is continuing to develop as it should, and that this could be her last visit for a while. I'll let you know what the results are.



Thursday, July 10, 2008

Johns Hopkins

There's a great show on tv right now about what goes on at Johns Hopkins Hospital. Last week, they showed a lung transplant (I didn't watch it, and I don't know if I will). Tonight, they're prepping for a heart transplant.

It's definitely NOT a show for kids, but if you want to see what our life in the hospital might have looked like, Check It Out. You can watch previous episodes on the website!



If you're near the OBX on Saturday, August 9, check it out!

This is a mini-fundraiser in preparation for our 2nd Annual Great Strides Walk for Cystic Fibrosis. Grits Grill is the BEST breakfast on the beach, and it's twice as good when they serve it up for dinner. This restaurant is NEVER open for dinner/supper, but our friend, Patrick and his staff are working for free that evening and have graciously agreed to donate 100% of the proceeds to the Cystic Fibrosis Foundation! You might even be served that night by me (I don't know why, but that might attract a few people...)! You can eat in or take out, and you'll get a lot more than pancakes on your plate!

We did this last year as well, and it was a lot of fun, so don't miss out!!!


Seriously, It's Coming...

October 31, 2008

Wednesday, July 9, 2008

Birthday Girl!

Ever wonder what a birthday looks like for a 6th month old preemie?

Sleeping in...

Getting a big brunch and foot massage...

Taking a bath...

Dressing to impress...

Making a few funny faces...

And, or course, hanging out with an old friend...