Wednesday, May 13, 2009

A Date with the Perinate (A Rhyme every Time)

Chad and I went back to Charlotte today to meet with the Perinatologist and have a Level 2 ultrasound at the Perinatologist. There may or may not have been a slight side excursion through the Charlotte Douglas International Airport. I was excited(and possible the instigator), Chad was not as excited(actually not at all). He was afraid we were going to get arrested, or wind up on the wrong side of a tack strip. He's not completely to blame. Previously on one of our excursions we "accidentally" wound up inside of Fort Jackson in Columbia, SC. We weren't supposed to be there, and this happened very shortly after 9/11. Needless to say tensions were high in my Jeep Cherokee. Anyway, we made it out of the airport unscathed.

Anyway, the appointment with the geneticist was pretty uneventful. She basically confirmed most of the things we had learned on our own. It was nice to meet with her, and to have definite answers to our questions.

After the geneticist, we went back downstairs for a Level 2 ultrasound, and an appointment with the perinatologist. Good news first. At this point Johanna still has a great heartbeat. The fluid on her neck is starting to resolve. However, Dr. S. told has the Johanna probably has a serious heart defect. This was not unexpected news to Chad and me. We had done enough research to know that T18 kids just simply do not have healthy hearts. Dr. S told us that Johanna probably has Hypoplastic Left Heart Syndrome(HLHS). Again, this is common with T18 kids, and we were expecting to hear this. In HLHS, the heart's left side, including the aorta, aortic valve, left ventricle, and mitral valve(all very imoportant) are underdeveloped. The left side of the heart pumps oxygenated blood to the entire body. Pretty important. Here's the short version of what that means. In utero the babies heart has an opening called the ductus arteriosis, when babies are born, this opening closes in a few hours or days, and the heart begins to beat normally. The left side of the heart is not as important to survival as the right is while babies are still baking. Babies with HLHS can't survive when the ductus arteriosis closes, unless there is surgical intervention. Surgery is only an option in chromosomally normal babies. Johanna is not chromosomally normal, even though she is exactly how God wants her, so surgery is not an option for her. Does your head hurt yet?

Chad and I were expecting Johanna to have a major heart defect, so this news was not unexpected. With all things considered, we felt today's appointment went really well. Johanna still has a strong heartbeat, and that was what we were hoping we would hear today. God answered another prayer for us regarding Johanna. Even if she isn't healthy like Clayton is, she is still as much of a miracle that he is.

And, by the way, she already has chubby cheeks just like her big brother, and her mama. Too cute.

Thanks for remembering our family in your prayers. I have said this before, but I feel the need to express our gratitude again. We do not take lightly the fact that other people are taking their time to petition the Lord on our behalf. My heart is overwhelmed by your love and thoughtfulness.

I'm outie peeps. Hope ya'll have a great day. Ours has been.


Monica said...

We were told Evan had HLHS, but he had double outlet right ventricle. Although not as severe as HLHS it requires surgery which Evan was not able to have. My heart just breaks for you as you walk this journey. It sounds like you have an amazing support system in place so just know that I am praying for your family and little Johanna.

Courtney said...

This all sounds all too familiar to me .. Still thinking of and praying for you guys.

Kelly said...

Praying for y'all!

Jamie Lynn said...

Excursion through the airport?? Haha, I really can see you all excited and laughing and Chad being all "Nikki____" Hahaha.. Good stuff..

It's not good news and it's not total bad news. It's like in the middle.. Which is better than what some could ask for :) I'm always praying for you.. no need to question that :)

Love Ya Sis

Stay at Home Mommy said...

I am glad everything went better than bad. I guess that is how to say it. I like the part about her having chubby cheeks, I'll bet she looks just like clayton, mabe red hair and all. Always Praying for you!!!

Erin said...

Praying as God will meet you every step of the way. Praying specifically that he heals Johanna's heart through a miracle!