Don't tell my heart...

Wednesday Jun 09, 2010

Don't tell my heart...

...my achy breaky heart
I just don't think it'd understand
-Achy Breaky Heart, Billy Ray Cyrus

Many of my readers came across my blog in the first place because we used it as a way to communicate with family and friends when I was pregnant with Jay, and more importantly, when he was in the PICU at Duke facing heart surgery as a newborn. I've used it since to share details of our lives as we stumbled through parenthood, and to show off a pic here and there. It's now coming full circle and I need to use this space to let you know about a really difficult day we had and some really scary days that are to come.

Today, we went for Jay's regular check-up with his cardiologist. These are usually smooth as silk ... listen to his ticker, do an echocardiogram, tell us his aorta is still flowing beautifully and send us on our way. Today's visit was very different.

We've been fighting recurring pneumonia for several months. Jay will be doing great, start to get a little cold, then WHAM he's got pneumonia. But after a course of antibiotics, he's better and we move on our merry way. He had another very sudden episode on Sunday, and that makes the 3rd pneumonia in as many months. (So that's what having a little brother does to you, huh?) We'd talked with the pediatrician about it, and he was quite confident that it was not a heart issue, but he suggested we talk it over with his cardiologist just for confirmation. Dr. Cardio's immediate response was that it was NOT a heart problem, and said that he would try to get us an earlier appointment with an immunologist. There are some immune issues that are connected to heart problems, so everyone was looking to that as the problem. Then he went about his usual routine, listening to his heart.

Unfortunately, what he heard wasn't normal, and what he saw on the echocardiogram was really really really not normal. In fact, it was really bad. His mitral valve is significantly narrowed, which means blood doesn't move through the heart correctly. And, more significantly, the valve is leaking which means blood is moving the wrong direction and causing fluid to back up into his lungs. The fact that he constantly has fluid in his lungs is the reason for the frequent lung infections. No one seems to know why this has changed so significantly in the past 6 months. It was not there when he was born, and there is no good explanation for what caused this major valve problem.

The solution to the two mitral valve problems is open heart surgery. We hope that the surgeon will be able to use the valve that he's got and repair it to normal function. If he isn't able to do that, an artificial (mechanical) valve would be required. Repair of his existing valve has a much better long-term prognosis in terms of quality of life.

Because this is a much more unusual problem than the coarctation that was corrected as a baby, our cardiologist is recommending that we see a heart surgeon in Charlotte at Levine Children's Hospital. We are leaving tomorrow morning to meet with him and have additional testing done, including a 3-D echocardiogram which will be done while he's sedated. We hope that will give us a much better understanding of what's going on and what the surgical repair will involve. Surgery may be scheduled as early as next Monday or possibly a few weeks later if he's stable. We will update the blog when we know more.

It's important to note that Jay *feels* fine. He's happy, not in pain, and not showing any signs that this is as serious as it is. He thinks he's going on a fun trip with Mom & Dad tomorrow and while he seems to understand that we're stressed out, he's his typical happy toddler self. Derek and I are (understandably!) freaking out and trying to keep a calm exterior. Sometimes we succeed better than others. Luke is staying in Raleigh for tomorrow's trip to get some extra special attention from LaLa and Popper. If we end up staying longer in Charlotte, they will bring him to be with us.

We covet your prayers - for Jay's health, for guidance as we make decisions about treatment, for the doctors to understand the complex problems and how to heal our baby. Thanks for being the kind of supportive friends and family we can rely on when the wheels fall off the wagon.

Posted at 10:32PM Jun 09, 2010 by Jen Foster in General | Comments[20]
Comments:

Dennis shared with me yesterday that Jay had pneumonia again and all I could say was "that's not good". Correlation to the heart was unexpected. Although it was not as obvious to even the most educated (Dr's) at first, it was not a surprise to our God. Jay is in the Lord's hands and we are praying for you all and Jay, who is constantly a blessing to all who meet him.

Posted by Great Aunt Ali on June 09, 2010 at 10:54 PM EDT #

Oh my gosh! I hate this for you guys and for Jay. You will all definitely be in my prayers.

Do you remember my suitemate Jennifer? Her husband had a really bad heart problem when he was little. He had to go through open heart surgery when he was probably just about Jay's age. She has told me how scary it was for his family while they were going through it. The good news is he's great - and that was probably over 30 years ago! Think of all the medical advances since then. I will be thinking about you guys!!!

Posted by Ginger on June 09, 2010 at 11:03 PM EDT #

We will definitely be keeping you in our prayers. I know that Dr. M is doing what is best by referring you to the new doctors. If he says they're great, I'm sure they're the best! Travel safe! Lots of hugs!

Posted by Cynthia on June 09, 2010 at 11:21 PM EDT #

Dear, Dear, Dear Jen, Derek, Jay and Luke,
You all will be in my prayers and I know God will be holding you all in the palms of His hands. I wish you weren't having to go through this and if there is anything at all I can do, please let me know!
Love and God bless you all,
Susie

Posted by Susie on June 10, 2010 at 02:25 AM EDT #

Jen and Derek,

You've been in my thoughts constantly since I read this post last night. I'm sending you love and prayers for a swift and permanent recovery. I shared your beach pictures with my mom the other day and her first comment was how happy Jay looked. Keep that in mind over the difficult days and weeks ahead. He's so lucky to have you-keep up your strength.
With love,
Katrine

Posted by Katrine on June 10, 2010 at 07:26 AM EDT #

We will continue to pray. Know that there are many there for you - to support and uplift even when you can't physically see us in Charlotte.

Posted by Lisa on June 10, 2010 at 07:31 AM EDT #

If you guys need a place to stay, we're not far from Charolotte. Or if you need anything, you can give me a call and I can bring it to you (336.413.0326)

I hope all goes well with the little guy. He really stole my heart the day I saw him a few weeks ago!

Posted by Erin on June 10, 2010 at 07:40 AM EDT #

We're thinking of you guys!

Posted by Stacy on June 10, 2010 at 09:15 AM EDT #

PRAYING, PRAYING, PRAYING ... for peace for you & Derek, wisdom for the new surgeon, and a healthy little boy at the end of all this!

Posted by Joye on June 10, 2010 at 10:07 AM EDT #

Jay's best friend Oren sends hugs and prayers your way!

Posted by Oie Osterkamp on June 10, 2010 at 10:15 AM EDT #

Jen and Derek,

I really enjoy hanging out with Jay in extended session. He is an incredible child. Of course, you already know this. We will be praying for Jay and your family as he goes through another stressful surgery.

Posted by Sean Toomey on June 10, 2010 at 10:36 AM EDT #

Oh Jen, I am so sorry to hear of this news. I got D's email this morning and just finished reading your blog details. I'm glad you all have a plan that is coming together. I will be praying for every doctor and nurse that you meet, and especially for you guys. You all have been and will be on my mind often. Let us know if we can help out in some other way as well. Love and hugs to you all.
Rebecca

Posted by Rebecca Sasser on June 10, 2010 at 12:05 PM EDT #

Jen and Derek,

I really enjoy hanging out with Jay in extended session. He is an incredible child. Of course, you already know this. We will be praying for Jay and your family as he goes through another stressful surgery.

Posted by Sean Toomey on June 10, 2010 at 12:14 PM EDT #

You can send Jay a message by going to: https://www.levinechildrenshospital.org/secure_custom_body.cfm?customPage=actEmailAChild

May God watch over your family and bring you through this with an even stronger faith!

Posted by Bethany Watkins on June 10, 2010 at 12:35 PM EDT #

I will keep Jay and all of you in my prayers.

Posted by Debbie Gilland on June 10, 2010 at 01:09 PM EDT #

We'll just have to put the wheels back on and circle the wagons! We'll surround you and your family with love and prayers.
Love you, Annie

Posted by Annie on June 10, 2010 at 02:20 PM EDT #

Jen, Derek, Jay & Luke:
I will keep you all in my prayers. Take Care, Sylvia.

Posted by Sylvia Mc on June 10, 2010 at 03:06 PM EDT #

Jen and Derek,

I really enjoy hanging out with Jay in extended session. He is an incredible child. Of course, you already know this. We will be praying for Jay and your family as he goes through another stressful surgery.

Posted by Sean Toomey on June 10, 2010 at 04:56 PM EDT #

Jen and Derek,
Just wanted you to know that we are praying for you, Jay and your entire family during this time. Hope your visits in Charlotte go okay. Please keep us all updated so we can continue to pray!

Posted by Emily and Brian Moore on June 10, 2010 at 10:38 PM EDT #