So Much to Learn

Thursday taught Heather and I that there is a lot of followup needed for Gwen as she grows up. We had some meetings on tap at the hospital that were necessary before her discharge. One was with the Spina Bifida Clinic. There was so much to cover and go over that our heads were spinning. We even came away with a three-ring binder full of stuff as well as another "guide" of things to look out for once we get Gwen home.

It's funny. As Heather will tell you, I am a planner. I map things out in advance and as I progress though them, I dutifully check things off in my mind as they transpire. This week has humbly taught me that planning is sometimes not possible. Before the girls came, my tough was that by the time we made it to Week 2, I'd be able to work more part-time in the office, splitting my time between home with Heather and Braelyn, Gwendolyn at the hospital, and work at the office. Let's just say I miscalculated, as you can tell from the timing of this post.

Just scheduling these consultations at the hospital, let alone sitting through them, has been a task. In the next couple of days we will have met with representatives from the Spina Bifida Clinic, physical therapy, social services, neurosurgery, plastic surgery, and possibly our discharge meeting. I'm sure there will be a couple others that I don't even know yet. Each of these are more than just a quick "howdy" to say the least.

But I will say that while Gwendolyn will obviously need a regular series of visits to the Spina Bifida Clinic for the rest of her life, Heather and I came away from the meeting encouraged. There is obviously a lot we won't know until she grows in terms of any limitations she'll experience but as the nurse was going through the spectrum of items that spin bifida covers, there were many moments that she'd pause and note that Gwen currently exhibits symptoms that are in line with children affected in a more mild case.

It's already been a difficult journey... especially as a first time parent that doesn't have a solid baseline. There's so much that goes into being a parent... even more so when you have a child that will need specialized attention as she grows. Yet, as we sat there, we again began to realize that Gwen's situation could be so much more severe than it hopefully will be. We're flanked in the NICU by children with serious cardiovascular or digestive issues... it just makes you blessed for the things you have.

I need to send kudos to Jan Cox for subbing for Grandma and watching The Peanut for us during these hospital visits. I honestly don't know how we would have gotten through this had she not stepped in. Luckily, Braelyn is an easy subject when it comes to baby sitting. Still, it's been much easier to focus on Gwen's situation while we are at CMH knowing that Braelyn's in good hands.

Now that I've spent the majority of this blog not really updating anything in direct regards to the girls, they are each doing marvelously. Braelyn's still getting the hang of nursing and seems to not be a big fan of sleeping in the late evening. Still, she's far from a fuss.

For her part, Gwen continues to progress. Each time her discharge date gets set, there seems to be a change. Right now it looks like the target is going to either be Monday or Tuesday... but just like the weather in Florida, just give it five minutes and it'll inevitably change.

Still, she's doing so much better right now than I ever envisioned. When we visit her in the hospital, you almost forget that all that she's had to deal with because she seems so close to where her sister is back at home. Speaking of that, Heather and I can't wait to get Gwen home and to reunite her with Braelyn. Still, we respect the process and are blessed to know she will be home with her sister sooner than later.

Friday morning will bring a slew of more meetings at the hospital. But again, each one gives us promise and hope while reinforcing that Gwen and her feisty attitude are going to be just fine as she grows.