Zachary Robert Taylor

2/02/2010 08:24:00 PM Edit This 2 Comments »
The last time I wrote, I said I'd be back in a few days with another post. Well, here it is almost a month later and I'm just now getting to it. Better late than never, I guess!

We are so excited, thankful, blessed, grateful, etc., about expecting a sweet baby! I've had an ideal pregnancy. The first trimester consisted of a few queasy moments, but nothing compared to the sickness that many people experience. We found out the week of Thanksgiving that he is a boy! I kinda felt like it was a boy all along, so I wasn't real shocked when the doctor confirmed it! That day was somewhat bittersweet. We also found out there was a possible problem, as the sonographer couldn't identify his cerebellum. My doctor referred us to see a perinatologist. After a few appointments with him, we were then referred to University Medical Center in Jackson.

We went to UMC on December 30, 2009, to have a fetal MRI so they could get a closer look at Zachary's little body. Based on what they saw on the MRI, they have diagnosed Zachary with Dandy Walker Malformation. DWM is something we'd never heard of before and honestly, I wish we still knew nothing about it. However, it is a reality for us now unless God sees fit to heal Zachary from this awful syndrome.

Dandy Walker Malformation is a brain malformation involving the cerebellum and the fluid filled spaces surrounding it. Zachary's cerebellum and vermis are smaller than they should be. There is also a cystic structure in the posterior portion of his brain. Thankfully, he doesn't have any of the other abnormalities that are often associated with it. He also has a normal karyotype which indicates a better prognosis as well. Unfortunately, with Dandy Walker Malformation, the odds are often against you. At our diagnosis appointment, we were told it is "not a matter of if he'll die, but a matter of when". I don't think we heard another word after the doctor said that. Of course, only God knows if we'll bring Zachary home with us. The doctors have definitely opened our eyes to the degree of severity we're looking at, but they've recently told us to prepare to bring him home from the hospital. Zachary is measuring right on target in all areas. When we went to the doctor last week, January 27, 2010, he weighed approximately 2 lbs., 4 oz.

We've faced the reality of the situation. We have talked about his funeral, where he'll be buried, organ donation, postponed baby showers until after he's born, slacked off on fully preparing the nursery, etc. While doing all of these things, we've also been praying for complete healing. You know, that is a really difficult line to walk on. It's very hard to balance reality and hope, but we are.

I have met some new friends since we've started this journey. One in particular has answered many questions I had initially, mostly about preparing for death (not that you ever truly can be prepared). We had just met through email and yet she answered so honestly and openly. I can only hope that what we are going through right now will help us to reach out to others who are in similar situations, just as she reached out to me.

I'll leave you with one of my new favorite verses:

Let us hold unswervingly to the hope we profess, for he who promised is faithful.
Hebrews 10:23

2 comments:

Kylie and crew. said...

I'm not sure how I found your blog, but I've been checking it occasionally waiting for another post.

I'm going to be praying for Zachary...praying that God would heal him and guide you as you walk this journey.

Thank you for sharing! Bless you.

The McGinley Family said...

Kelly, I can already tell you're a fighter and a perfectionist. You want everything to be perfect for him and his arrival. And Zachary is so blessed to have you as his Momma as you are also blessed to have carried him. He's already leaving his imprint on this world. I know he's left one on my heart already :)