Monday, September 28, 2015

Nemours Perinatal Program

Hi there, lots has changed since the last time I posted to the blog.  September was a busy month!

For those that are new, welcome!  I started this blog when we were pregnant with Isaiah as a way to share what was going on once we found out that things weren't typical.  We have a big family, and it was hard for us to call each person to tell them, going through the emotions each time.  Once Isaiah was born, the blog blossomed into telling about life with him and his OI, and started being viewed by more than friends and family.

When we were pregnant, a number of doctors and medical professionals threw around the word "lethal".  We were told by some that Isaiah wouldn't even be able to cry, that when he'd go to take a deep breath, his expanding lungs could break all of his ribs, the pain would be too much, and he wouldn't be able to take the deep breaths he needed to.

But that was wrong.  He did cry.  His cry was loud and it was beautiful.

Thankfully we had found Nemours (AI DuPont) while pregnant.  When we found Nemours, the word "lethal" was never brought on the table.  Instead, Isaiah's geneticist, Dr. Bober, would tell us that we couldn't predict what would happen, that we'd have to wait and see once Isaiah was born.  In the meantime, we worked with the Perinatal Coordinator and the NICU to set up a plan for Isaiah's arrival.

You can learn more about Isaiah's beginnings here.  For now, I want to share a video with you.  Back in July, during Isaiah's Pam treatment (Pam is what I call Pamidronate, the medicine that Isaiah gets every 2 months to basically help strengthen his bones), we helped Nemours to create an advertisement for their perinatal program.  We are one of three families that were to be featured in the video.

Recently, we were able to view the final cut. Check out Isaiah passing out in my lap (ha) while we shared pieces of our story below:

We love Nemours. I mean it when I say if it weren't for them, that I don't think he'd be here.  When I talk to other families affected by severe OI, I often hear that the word lethal continues to come up (even after the child survives birth, doesn't need breathing support or if they do, only minimal support, etc).  Thankfully, the teams Isaiah has worked with at Nemours never let that word affect how they cared for Isaiah.  They only ever believed in Isaiah.

And for that, we're forever grateful.

I'm attempting to get back to regular blogging this week for anyone who'd like to learn more details of our lives, from doctors appointments to play time.  I am working on posts for Wednesday and Friday about details of our first OI Clinic experience and his sleep study results.  :)

1 comment:

  1. That video just made me cry. It brought back the emotions of first finding out. It's amazing what wonderful doctors can do to help you find peace in such anxious times. I'm so grateful for doctors and especially our physical therapist who all love Tyler. So glad you have such amazing care for Isaiah there! Thanks for blogging. It's so enjoyable to read!