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

Gwyneth Update

This is your preemie...


This is your preemie on sedation and morphine...

Any questions?

Seriously, though, Gwyneth is doing great! That last pic was taken just after her surgery yesterday. She is continuing to eat well, and is doing great after the surgery. Basically back to "normal" this morning.

We've obviously chosen not to share the specifics of Gwyneth's surgery for personal reasons, but again, it was something that was relatively minor and something that we've known about for several weeks. They were simply waiting to operate until just before she was ready to go home. She should have no lasting issues.

We never made it to the baby stuff today, so we'll try again tomorrow!

Thanks!

Nate

Today

Today, among other things, we are going to do some baby shopping. I believe a Stroller and Car Seat are the two main items on the list.

But first, we're going to go check in with Gwyneth. She decided to extubate herself about an hour after surgery yesterday, and she has been breathing on her own since. She began feeding again at 8 this morning and continues to do great! She's still in the NICU, which is fine with us as we feel more at home there anyway after 3 months there...while the nurses in the step-down unit are just as great, it just doesn't feel the same.

Right now we're looking at mid-week to bring Gwyneth home!

Thanks!

Nate

In Lieu Of Gifts

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.

Thanks!

Nate

Fraggle Hats

Several people have asked me where I got Gwyneth's "Fraggle hat" from. Kristi Rutledge makes them and sells them Here.

Enjoy!


Nate

Fraggle Rock-a-Bye Baby

It's very important that you watch this video before reading the rest of this post...



I always wanted a Fraggle...



We've received lots of fun baby stuff, but this one hat has got to be my favorite so far.

Nate

Burp!

Burp Cloths, that is...

Sara Cohen is one of my blog readers, and after following one of her comments to her blog, I saw the link to her Keiki Cloths business.

From her blog:
Keiki is Hawaiian for baby, or child. These cloths are a more stylish version of white cloth diapers used for burping babies. Different fabrics, fun colors, more pleasing for mom, dad, and baby!

Tricia and I are all about anything Hawaiian, so I sent Sara an email and ordered a few Hawaiian print burp cloths for Gwyneth.


I thought I would share about Sara's budding business because I know there are a lot of parents, grandparents, etc. who might be interested in ordering something.

Thanks!

Nate