After an insane couple of weeks, tonight is family night. We read books, danced to all kinds of music and watched a movie together. I think I had more fun than the kids did. Emi and Drew somehow choreographed their moves and Eli was headbangin’ like crazy! Here’s a sample of the fun:
So yesterday we went to the long awaited cardiac appointment for Eli. We’ve been anticipating this visit for months now. Why? Because although the repairs to her heart during surgery have held like glue, her aortic valve is just too small. Although the docs have explained this in tons of medical terms, the way I understand it is that the valve hasn’t grown with the rest of the heart and it’s like a fire hydrant through a straw. Ok, not that much pressure but you get the picture.
They use a measurement termed, “pressure gradient.” Apparently the normal number for you and me is around 4. As Eli’s grown, the first couple of months of her life, the numbers doubled each visit until we reached about 57. The cardiologist said that Eli can live a normal life with those numbers, especially since the other side of her heart has strengthened in size to accommodate the pressure. However, when the numbers reach 70 or so, intervention would happen. And the cardiologist has been saying since day 1 that something will have to happen before her first birthday. We’ve been praying specifically for just the opposite. That God would not let the numbers go up. About 6 months ago, the number went to 58. And yesterday the valve showed a pressure gradient of 60…Praise God!
We know that God knows what’s best for her and we’re praying like crazy that no intervention will ever be needed for Eli. On the other hand, although we don’t want to admit it, intervention may be needed as she gets older. She’s only going to keep growing – although she’s not showing us that right now…14 pounds at 1 year old – and the valve won’t just start growing.
So, we’ll keep everyone posted as things develop, but for today and until our next visit – 6 months – we’re going to celebrate what God has done. He’s healing her. He’s given us the most energetic joy magnet ever. Eli’s such a blessing to us and we are still in awe of her. Eliana – My God has Answered.
Can’t believe it, but Eli’s one tomorrow. It’s hard to believe that just one year ago, we were going thru so much with her. We’re truly blessed to have her with us so full of energy and joy.
We showed this video at her birthday celebration this past Saturday.
I know I haven’t visited the blog world in quite some time, but life has been crazy. Work has changed, the family is growing, priorities have shifted and life seems to be moving at a much faster pace these days. Emily started, “real” school this year. Andrew, after a series of surgeries, is in his last year of pre-k. And Eliana will be 1 year old next week.
It’s hard to believe that one year ago, the most trying and challenging time of our lives was a huge reality. You’d never think that Eli has any heart issue at all. She by far is our most active, loud and cheerful baby. Did I mention she eats like a horse?! Don’t have a clue how her 15 pound frame handles all of it.
So we’ve played baseball, gone fishing, bought a van, had surgery (that’s Drew under the influence), Emi lost a tooth, and I got to drive a Shelby G500 KR. (540 horsepower if you’re wondering)
This past year has been a challenging one, but on the other hand, it’s been the most blessed filled year of our marriage. We’ve been broken and mended, in the valley and on the mountain top, sad and full of joy. But one thing I know. Our God has answered our prayer and He is so faithful to us. I can’t imagine life without Him!
Today Chad and I took Andrew to see his eye surgeon. After examining his eyes again, we all decided that he needs to have another surgery. When Andrew was only one year old, Chad noticed that his left eye moved very high and outward he began seeing a specialist. “Doing the eye”, has become one of Andrew’s famous tricks. Especially when he’s in trouble. Try discipline with a straight face while your kid makes this face…impossible! We end up laughing every time.
Back in June, while visiting family in Birmingham, we took Andrew to see an eye specialist at the Children’s Hospital. Having a second opinion confirmed to us to go ahead and try to have Andrew’s eye fixed…again. Its not an easy decision to have your children undergo more surgery.
We would like to have it done before preschool begins but the surgeon is booked all the way through October. Andrew has been added to the top of the cancellation list to try and fit him in. If he can’t get in before school then we’ll wait until the first of the year.
For whatever reason, God seems to continue to lead us down this road of surgery. Thankfully, Andrew has no fear…ignorance is bliss! After his first surgery in Feb 2009 he cried for Emily and a ham sandwich. The next time he goes into the recovery room, I’ll have the sandwich ready…no Emi though!
Check back for more updates. Your prayers mean so much to us.
So today I had all these plans…of course all outside work. Now that I’m inside, wishing we could be outside (three kids inside all day is not that fun…stir crazy), we started talking about how much fun we had last weekend. I put the kids pool under the slide…Waterpark Baby! What a blast!
Untitled from Chad Clem on Vimeo.
Its been a year since I found out that the baby that was growing inside of me had life threatening heart complications and most likely had them because of DiGeorge Syndrome. I’ve had so many doctor appointments that I’ve lost count. It’s hard to believe, but Eliana was born almost 9 months ago and she had to face my worst fears on day two of her life. She’s still had obstacles to face, but nothing compares to then. Through all that pain, I’ve witnessed a miracle.
Many of you remember Eliana getting an initial test for DiGeorge while in the hospital and learning then that the tests came back negative. Great news! In June, however, we met with a geneticist to discuss the possibility that she may actually have a variant form of DiGeorge. He told me that nearly all children born with her type of heart defects have DiGeorge Syndrome. So after a long 6 weeks of waiting and reliving fears, I can’t describe the anticipation and anxiousness that flooded over me when I saw Albany Medical Center on the caller ID yesterday. The results are in…Eli’s DiGeorge Free!
I can’t describe how happy I am. Eliana continues to defy statistics. You would think that I’d gotten over the healing that God has done in her precious body. But the truth is I haven’t. Not one day has gone by that I don’t think about some aspect of the journey we are on. I can’t seem to express my gratefulness to my God, to my family, to my friends, to the medical staff that have changed our lives. My eyes often fill with tears, my throat tightens and I’m all choked up. So much so that Emily and Andrew just think it’s normal for mommy to cry on a daily basis.
When Eliana’s genetic counselor explained that there is no genetically known reason for her heart
defects…my eyes filled with tears. I praise God for how He designed my baby girl. I sat down to explain my tears to Emily & Drew. I told them how God has helped us through each step in this process. The three of us talked about how God brought Emily through hernia surgery, Drew through eye surgery, and Eliana through heart surgery. Emily’s responded, “Mom, God is our Healer!”
Our God has Answered….Again!
Today I had the opportunity to lead our staff meeting. What a team! I’m so proud and privileged to be a part of the Northway Church staff. As I prepared for the meeting I felt God speaking to me. I’ve been so focused on what I do for the church, what I do for God. I want to be productive. I want to be effective. Great thoughts and actions, but then it hit me.
What are you doing? That’s always the question…a good one, a neccessary one. It determines results. Identifying what you do is definitely important. It’s how you measure success. It’s how you know if you’re doing a good job or not. But I felt God asking me, “what are you NOT doing?” I would argue that if you’re not identifying the things you’re NOT doing as well, you’re setting yourself up to fail.
Crazy to think about, but ask that question through every lens of your life: your relationship with God, your marriage, your parenting, your friendships, your job, etc…
So what are you not doing? What do you need to start doing?
Just a quick update:
Eli’s tests came back great. For the third straight visit, her numbers didn’t change….AWESOME! The doc said that her aortic repair and VSD repair are holding up great. Her aortic valve is still broke, but with the numbers not going up, we won’t have to go back until October or November.
Thank you for all of your prayers. Leah and I truly appreciate them.