Saturday, February 28, 2009

"Good Day"

A man I greatly admire died today.

I hope your next page is glorious...good day, Sir.


Puddin' Head

Another first...chocolate pudding. Apparently she has no qualms about new textures 'cause she was totally into this!


Friday, February 27, 2009

(They Say That) Sitting Up Is Hard To Do-o

But my girl makes it look so easy...

Although this is the result of several months of progress, she's been able to spend more than a few seconds sitting up on her own (we sit her up, because she can't get there by herself) for about a week now...all she's got left to learn is how to break the fall...


(Bump) Photography Q&A

I just realized that people could not comment "anonymously" on my photo blog...I've made the anonymous option available now, just in case anyone has been trying to leave a Q over there and couldn't. Thanks!

FYI, I'm doing a Photography Q&A over on My Photography Blog....


J-E-L-L-Oh So Messy

JELL-O is not just a tasty and fun's also great for learning about new textures. Although she got it just about every else, I don't think she actually got any in her mouth (which, again, wasn't the point anyway).

Just a friendly tip of wisdom and experience...although blue is a great color (easy to see and brings our your daughter's beautiful eyes), we might go with yellow next time to avoid the 24-hour, blue-stained baby hands.


Thursday, February 26, 2009

More Party Fun

Tricia and I teamed up on the cake...she did the baking,
I did the decorating...

A little wrapping paper never killed anyone...
Her first musical instrument!

As always, the excitement of the moment is too much too handle...
After the party, we took a walk down to the water to watch the sunset and burn off the cake and ice cream.


March of Dimes: Ambassador Child

Gwyneth has been invited to be one of the Ambassador Children for the Outer Banks/Dare County March of Dimes - March for Babies for 2009. Her parents have given her permission. :)

Her first official responsibility was to introduce herself at the kick-off breakfast this morning...actually, I did the introducing. We're very honored and excited to participate in this year's fund-raising walk which takes place on May 16 at Roanoke Island Festival Park, and we pray that we can help this event to be a huge success.

We look forward to telling you more about this event and the ways that Gwyneth is able to participate! I'll be announcing some great ways that you can get involved and join our team!



Wednesday, February 25, 2009

200 Points...

...go to Kira =] for correctly guessing the name of the song in This Video is "Summer's Cake" from the Napoleon Dynamite soundtrack. I will award Jennifer 50 points 'cause she also gave the name of the composer!

Don't use all of those points in one place!

Now, back to your regularly scheduled Wednesday...


Monday, February 23, 2009

Eye Surgery

We drove to VA for a pre-op consult with Gwyneth's eye doc/surgeon (who is one of the best ever with this kind of thing) this morning. The surgery has been scheduled for March 5, although we won't find out what time until the day before...hopefully it's not too early in the morning.

The 45 minute surgery will be on her right eye and will involve moving a few muscles around and detaching a tendon (that should reattach itself with time). It will be an outpatient surgery, so hopefully we can be home that night. She'll probably have some bruising around the eye and some redness in the eye, and tylenol should help with any discomfort she might feel during the first few days. There is a possibility that the surgery will actually cause her eye to overcompensate (the eye may be pulled too much in the opposite direction) which could lead to a second surgery, but we're praying that the first time will be enough.

Although we're totally cool with everything right now, I'd imagine that Tricia and I might be a little nervous while we sit in the waiting room that day. The dynamics of our situation have changed dramatically over the past year...very little of what took place in the hospital with Gwyneth a year ago caused us much apprehension, but now that we are full-time parents, our feelings and emotions have grown into, perhaps, whatever feelings and emotions "normal" parents might also experience in a similar situation. I'm not sure if I can explain all of that properly, but I'm guessing other preemie parents might know what I'm trying to say (These Posts might help as well).

All of that to say, while we totally believe that God will have Gwyneth right in the middle of His hands that day, her parents would certainly appreciate your thoughts and prayers for her and us as we experience something new and bit scary.



Sunday, February 22, 2009


Like many parents, this was the most awaited birthday moment for me (at the risk of rousing the doodle police)...

You may notice that Gwyneth is self-feeding, which is a pretty big deal and something that she has just started the past few weeks and is still trying to figure out (obviously...). Instead of giving her a piece of cake, we actually made a little cupcake with a "G" and a candle (along with a big cake for the rest of us to enjoy), which is what you see her eating. More pics and video from party central to come!

BTW, I'll give 200 CFHusband points (worth absolutely nothing) to the first person who can correctly tell me why the song in the video above fits so well...


Saturday, February 21, 2009

Answers (At Last!)

> Tricia has not contacted her donor's family yet. The transplant team suggests you wait about a year before writing the initial letter, so hopefully it will be something that we do soon. Depending on the response (or lack of), we may or may not share anything with the public about our possible correspondence with the donor's family.

> Tricia worked several jobs during her teen and young adult years prior to last year...she is now a full-time mommy.

> Yes, I finished "The Story Of Us" a LONG time ago...

> Tricia knows very little about her biological family, mostly by choice, and all of which we'll keep private. She has never struggled much with knowing she was adopted (which took place when she was very young).

> can come stay if you can figure out how to get to the futon thought all of the boxes in the guest bedroom.

> Megan...your yellow ae sweatshirt is in our living room.

> Here is the meaning behind Gwyneth's name. We did have a boy name...

> The biggest day-to-day struggle we have as a family post-transplant is trying to find "normal". Being in our own home is helping, but it's difficult to have a set schedule and routine as Tricia's health needs are always changing...from a bad night's sleep to a side-affect caused by a med to the last minuted visits to Duke, it's very difficult to know with any amount of certainty what we're doing from one day to the next.

> Cookies are my weakness (along with ice cream)'s hard to say what is my favorite, but chocolate chip might be it.

> We both do a lot of the cooking, although Tricia is doing more now that she has more energy and her own home. I cook a lot of breakfast and a lot on the grill.

> We don't watch American Idol...but, we're not watching much of anything on the tv right now because we don't have cable. We do watch a few shows via the internet.

> In the mornings before Tricia is awake, Gwyneth and I spend time waking up together, smiling at each other, and lots of book reading...she loves books (something she definitely gets from her mother).

> The thing I enjoy most about my job at NHC is spending time with people, especially leading worship (and, I actually work for everyone who is a member of my church, not just one person).

> This is my favorite song at the moment.

> When I was younger I wanted to be a baseball player. Tricia wanted to work with animals.

> "I would love to know how you manage to do everything- Gwyneth, Tricia, Work, Laundry, Moving, Blogging, Photography, Dinner, Cuddles, Decorating, Church? Do you ever ever sleep?" Yes, I sleep...not quite as much as I'd like to, but that's mostly my choice. Tricia is doing a lot more now that she's feeling much better, so my life isn't nearly as busy and full as it might appear to be.

> Tricia likes to think that she's a crafty person, and although she's tried her hand at several things, she just doesn't have the personality to really invest a lot of time into one single thing...she's the type who likes to do a little bit of everything, try everything once.

> Tricia is enjoying life as much as she possibly can. She is still a first time mother, experiencing much of what all other first time mothers experience, including the frustrations and stress. She still deals with medical issues on a constant basis...beside her transplant recovery, diabetes, CF-related digestive issues, etc., she also has had several minor medical issues, most of which we don't blog about for various reasons. She has a lot of trouble sleeping, at least 50% of the time...the cancer slowed her transplant recovery for a few different reasons... She'll never be able to live knowing that all of her medical treatments and procedures are behind her.

> I've asked Tricia to write her own blog post about life with her new lungs, post-cancer, etc. as many of you have asked about that...I'll let you know when she does that (soon).

> We do get recognized in public, almost always around Durham (never at home, except for people visiting our church). The first few times were a little strange, but now we're used to it, although it's not like it happens all the time. It seems like everyone who we come into contact with on a regular basis (staff and other CF/transplant patients) at Duke follows the blog and keeps up with the news stories, which is nice because we feel like many of the medical personnel are our friends and they really care for Tricia and Gwyneth beyond what is expected.

> I can't answer the question about "what if" concerning being a CF carrier...I can only tell you that, if our situation had been different, we would have probably thought differently about it.

> We are still very selective about where Tricia and Gwyneth go, especially during the winter. Gwyneth has been getting her RSV Shots. Hopefully when the weather warms and most of the germs go into hybernation, Gwyneth will be big and old enough to do more and hang out with whomever and where she wants to. As I've explained before, the immunosupressant drugs are typically reduced after the first year, which means a lower risk of catching a bug from others.

> I have a few "special" songs I sing to Gwyneth, but mostly I make up songs...there are a lot of fun things you can rhyme with "Rose".

> Plastic.

> At this point, we're not actively pursuing adoption, but we hope it will be an option in the future should we decide to grow our family. Right now, we're simply trying to stay healthy and enjoy each other as much as possible.

> This is "our song". Actually, most of our wedding ceremony music was courtesy of Coldplay.

> Vacation...that is something we're currently making plans for...stayed tuned...

> I do have friends who do not share our faith...I interact with them about the same way I do with anyone else. Since our church actually exists for people who don't go to church, they would be totally welcome.

> "Do you have topics that are 'off limits' or that you naturally gravitate away from when you write on your blog?" I thought this was the most interesting question...mostly because, I'm not really sure how you're wanting me to answer....hmmmm....

> My mom's hand healed up very's not perfect, but nearly.

> Jeff is doing very well and is in remission...he and his family are enjoying their crazy life, back to "normal"! We're very thankful for the support they have received.

> Actually, I call Tricia "Patty Sue" and everyone else calls her "Tricia" (except for the receptionists at Duke, who call her "Patricia").

> And, of course, the big questions concerning Gwyneth development. I'll give you a short answer now, and then post a series of videos to actually show you how well she is doing.

Gwyneth has been assessed to be at about a 5-6 month old level, developmentally/motor skills, although, she has recently been making big strides and hitting some key milestones. We are not worried or we have shared before, we are simply amazed and thankful that she is even here with us now, and we will celebrate every milestone like any normal parent and will not be scared about her future. To be focused on the unknowns of the future is to miss out on the blessings of the present. We'll enjoy her little, dependent sweetness for as long as we can!

Of course, some of her doctors are concerned, as she is a little behind even as a micro-preemie...but, then, some of her doctors aren't concerned. She has not shown any signs of long-term complications other than what I have previously shared. She has been working with a couple of therapists (actually, we are working with them as they show us ways to help her along) and we are seeing great progress. In reality, her poor eyesight is possibly a big reason why she is progressing slowly...she is very intelligent, very vocal, etc. but motor skills are very closely related to vision.

We do tend to keep Gwyneth's developmental issues more private than other topics we more openly discuss...because: 1) a lot of what we might share would be misunderstood (see This Post and comments for a wonderful example), and 2) someday, Gwyneth is might read all of this, and we need to be sensitive now to her feelings then.

> You can find answers to most of your questions about anything else I may have already covered on this blog by using the cool search bar at the top left-hand corner of my blog (see first pic below). For example...I typed in "life expectancy" and found the answers to a few of your questions via These Results. I've also been meticulous about labeling every post, and you can use the labels feature (see second pic below)...I clicked on the "transplant" label and found the answers to a few of your questions via These Results.

Thanks! It's always fun to see what kinds of questions people ask, and I enjoy taking the time to answer.


Friday, February 20, 2009

Meka & Ralphie

Ralphie the cat has settled in nicely to the new house and he and Meka the pug are back to being good friends...they play and wrestle several times a day, and sometimes they just like to sit around and do nothing...


(Bump) Q&A

I thought I'd bump this and open the comments up one more time for our anonymous friends...I've already got A's to the Q's, but don't mind waiting a few more days if there are any other good Q's.

It's been a long time since I've done a Q&A, and since we've had some major events take place since that last one, I figured we're about due.

I'll answer any question about the stuff on our blog that I am able and willing to answer and that I haven't already answered before like 35 times. I'd recommend that, before you ask a question, you use the "labels" feature over on the right of your screen, or look at the previous Q&A's to find out if your question has already been answered. I'll leave the comments open for several days to make sure everyone gets their questions in.

And, before you ask, YES, I'm going to post Gwyneth's 1 Year Birthday Video whenever I can find some time to finish putting it together...



Thursday, February 19, 2009

One Year Wiser

Every now and then, I'll go back and take a look at what was happening in our lives a year ago. I've been reading the posts from middle/late February of 2008...a lot of amazing and stressful things were happening in our lives, and it's a lot of fun and a bit strange to look back and remember. Reading through the posts and comments, I just realized that it's been nearly a year since I disabled the "anonymous" commenting option (you can read about that decision Here). I took a look at the comments I was deleting this time last year as well (yes, I save every blog comment), and there was a slew of really vile and disgusting anonymous comments...they always seem to come in bunches.

Anyway, I've grown and learned a lot this past year, including how to be a better blogger. Having a blog explode like this one did creates a lot of blessings and a lot of frustration...knowing how to deal with nasty comments has been one of those frustrating things that has helped me grow.

I've learned to nearly master that art of "ignore and delete, ignore and delete", and, whether unfortunate or not, the really cruel people seem to especially enjoy kicking you when you're down, and it seems we haven't been too down lately. All that to say, I'm enabling the "anonymous" commenting feature again, knowing that many wonderfully kind and encouraging people would love to comment without having to create a blogger account. Hopefully, this is a wise decision, but if not, it's easily reversed...



Yes Sir, She's MY Baby!

Baby Gwyneth at 13 months

Baby Nate at 5 Months

And, that's not even a great picture of Gwyneth to compare... You might notice that she and I are wearing similar fact, the overalls are the exact same overalls...scary.


Caption Winner

"hmmm... so this is where babies come from."

submitted by Molly

And, Beth get's an honorable mention for, "One of these things is not like the other. One of these things just isn't the same...."


Wednesday, February 18, 2009

Party Time!

This Sunday, we'll finally be celebrating Gwyneth's 1st birthday with a party! Because we were at Duke on her birthday, and we were moving into our house that next week, we decided to wait a while for a party so we could do it right. We've invited our family over to help celebrate, and we're looking forward to a fun day!

I'll be sure to take lots of pics and video! We hope you'll celebrate with us!


Tuesday, February 17, 2009

Photo of the Week

I just thought this shot was especially cute and needed to be her nurses in the NICU always said, she has the cutest button nose!


Monday, February 16, 2009


I grew up going to this aquarium at least once if not twice a year. It's probably the smallest aquarium in the world, but it's very cool to take Gwyneth to places that I can remember visiting when I was a kid. Although her eyesight inhibits her from seeing everything, the contrast, bright colors and the reflections in the water definitely kept her attention most of the time.

Tricia loves turtles and otters...

The highlight of my day...

Definitely NOT from the waters off of NC...

Not a great pic, but seahorses are so cool...

We couldn't believe they let this one roam free...

Gwyneth was diggin' the frogs.

We grow 'em big here...

A Ginormous shark you think it's real?