Thursday, June 10, 2010

a bump in the road

This is a difficult post, and hard to come up with the words to write it. Usually, I stick to the happy and fun things going on in our life, but we've hit a bump in the road. Everett was born with a heart murmur. Many babies are, it's a common thing and usually goes away we were told. So, we didn't think anything of it until his two month appointment when the doctor showed some concern that she could still hear the murmur. We were scheduled for an echo (ultrasound) and an EKG and finally got the testing last Thursday. Test results came back and he was diagnosed with something called aortic valve stenosis. We didn't really get a good explanation, probably because I was in a fog after they told me my perfect little boy has a not so perfect heart. We spent the next 5 days frustrated and bitter at times and sad and just upset. Millions of questions filtered through my brain --- was it something I did or ate or didn't do when I was pregnant? Will Everett be able to live a normal life? be a regular little boy that digs in the dirt and runs around the playground? The questions were unending, but also knew that the Lord had things worked out. So we prayed. Family prayed, friends prayed, and we waited (anxiously) for clarity. We had an appointment with a pediatric cardiologist from CHOP (Children's Hospital of Philadelphia) on Monday. We spent 2.5 hours there, having tests done and re-done and watching poor little Everett poked and prodded. In the end, we got a lot of clarity on what was going on with Everett's heart. He does in fact have mild aortic stenosis and they also found that his aorta right past the valve is twice the size it should be. While that sounds grim, it's not as bad as it could be. For now, Everett can be treated just like any other little boy his age. In fact, the doctor told us to pretend we didn't have the conversation (I think he could see the worry on our faces as he told us the diagnosis). We will have to go back to CHOP in September to have another echo and EKG done and will most likely need to have an MRI done on Everett before his first birthday. As long as his aorta does not enlarge any more, Everett will just be monitored. And while a lifetime of pediatric cardiologist appointments seems daunting, we are SO SO thankful that that is all that needs done for now. We don't know what the future holds for Everett and if he will get to run around on that playground or play sports if he wants to, but we do know that the Lord has amazing plans for him... and for that we are incredibly thankful.


(Psalm 139:13-14) For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and WONDERFULLY made; your works are wonderful, I know that full well.

5 comments:

Anna said...

Kristen and Aaron - we will be praying for you both and for Everett. I can't imagine all the emotions and things you've gone through. Please keep us posted if anything changes - we love you!!!

paulandsarah said...

We will keep sweet little Everett in our prayers and pray that they fix themselves over time.

h. no. said...

Wow, praying for you all. I am encouraged by your faith. Love you all very much! And we'll see you soon :)be

Katie said...

We are praying for you! He is such a great little boy. I am sure he was quite the trooper with all the poking and prodding. It is so much harder for us because we have to process everything. I can't wait to see your little man again and to have our boys grow up together. I sure hope they can run the bases together at next years softball games:)

Brianna said...

Kristen: First off let me say I am so sorry you are going through this. I actually found your blog cause I have an alert set up on my google account with anything to do with Aortic Stenosis. I know exactly what your family is going through as my daughter was also diagnosed with sever Aortic Stenosis when she was six weeks old. The very next week they wanted her in for the balloon procedure.(4/6/10) Talk about hitting rock bottom. I want to let you know that she is doing very well. I know it is super hard to go down this road but it does look like you have your faith in the Lord to get you through. Don't know how I would have done it without him. I want to let you know that I am here for you if you have ANY questions or just need someone to go to that knows how it feels. I remember having TONS of questions and being up late searching the internet as I still do. I'm not sure if you have facebook or not but I have found a few other awesome Christian Moms who are going through the same thing. Please feel free to email me anytime...brianna@keyway.net. I will keep your little man in my prayers.

God made him perfect!