Thursday, August 11, 2011

Ev Update



{Ev @ his last appt--gained weight again!!!}

On Sunday I was feeling overwhelmed by life. My smile masked my inner worry about little Ev, and yet I wanted nothing more than to tell everyone he was just fine. The pediatric cardiologist had heard a new heart murmur the week before, and had ordered an echocardiogram for Everett. What he found was not what I wanted to hear. Everett's coarctation in his aorta had come back and his blood pressure in his arms and legs were already different (meaning the blood flow to the lower half of his body was not perfect). He would discuss options with other doctors and surgeons, and would let us know when he had made a decision about what we'd do next.

The news was just another confirmation that congenital heart disease is a huge part of our new normal; but it was still hard to swallow. In the last few weeks each of Ev's appointments have brought a little helping of hope and a whopping helping of uncertainty and bad news. I have found my anxiety levels are out of control before each appointment as I try to brace myself for what we'll hear.

But what I secretly want to be is normal. You know, everyone else's normal. And I want Ev to have that same normal. You know, the normal that almost all other babies have. So on Sunday when everyone asked about Ev I just smiled and told them he was fine. The last they heard he was recovering perfectly...and I wanted it to stay that way. I didn't want everyone to worry as much as I had been.

Until, that is, a brother in the ward taught me a valuable lesson. I was expressing my concern about sharing Ev's condition with my mom after Sacrament meeting, when this soft-spoken, but inspired man who must have overheard our conversation, "Sister, you should share with us your concerns so we can worry right along with you." I've thought about that comment all week, and I'm grateful for it. He was right. While I don't want others to worry (of course), I do think that our families, our friends and our brothers and sisters in the church can ease our heartache by mourning or worrying right along with us. I'm grateful for his reminder and I'm grateful to all of you who have spent your time and energy loving us and worrying for us. We love you!

Anyway, our follow-up appointment was this morning and the news was slightly positive! The cardiology team does not think Ev needs another surgery yet (last week the doctor thought a surgery would be needed in the next month or so), and instead Ev will be closely monitored. He still has a narrowed aortic arch, his coarctation and a VSD (hole in the heart) so they have lots to monitor! I am grateful for this news. It's definitely better than it could have been.



{The infamous Dr. Si, Ev's heart surgeon. We LOVE this man!}

5 comments:

  1. Hmm...I feel you. I never like to let people know when things aren't good. Except for a select few. I think that ended up contributing to my anxiety over the years as opposed to helping it. You have a lot to worry about for quite a long time (I am now convinced it doesn't end past passing the bar!) I am sitting here all teary for you right now (and almost burned our Aloha Kabobs!) because it is hard to deal with life in general let alone other things added to the mix. But I will tell you one thing that as you continue moving through all this non fun and hard stuff eventually you realize that everything always ends up working out. Not necessarily good or bad, it just moves along. And there are always really awesome times in and among...That is what is so nice about being able to have these types of experiences. Like breaking in shoes. I'll stop babbling now :) but I look forward to reading about Ev as he progresses and sharing some of your worry!

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  2. You are brave. I'm glad you'll be closer to home to have lots of hugs and support. Those heart doctors at Stanford are pretty smart. We have friends in our ward whose young daughter is a heart patient and there a LOT. They take great care of her. Baby Everett is in our prayers!

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  3. I too am all teary eyed as I read your post. My heart is aching for you. Thank you for sharing your worries. I'll be one of the many to worry along with you. Know that you and sweet baby Ev will continue to be in my thoughts and prayers. Much love and {hugs}.

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  4. You are an amazing family. Thank you for sharing. I think when we share our heartaches with others, the worry is divided. When we share our joy with others, it gets multiplied. We are praying for your family and hoping that we are helping you with some of the worry. Love you all.

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  5. Never hide your worry Heather, that is the very time when an extra prayer, pair of hands or a hug can work wonders x Because you have shared little Ev's story on here, with out ever giving him a cuddle we love him already, even accross an ocean he is part of our much loved extended family.Even though I have been away from the church for a long time one thing I hold firm and true Heavenly Father does not sleep on the job, he chose you to be Ev's parents, and the choices you have made like staying in California have been sanctioned by him so that you have all those family members on hand to share this time. Cannot help but feel there is a very special plan for Ev and everything will be put in place for it to happen xxx

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