Friday, September 26, 2008

Miracles

Yesterday was a big deal here in our home. It was William's heart day. Eight years ago, our little baby boy went through his second heart surgery, and oh, what a difference it made. At six weeks old, William was frail, ashen, and tired. The Atrial Septal Defect in his heart was at 7mm. Pretty big when you consider that his entire heart was about the size of a walnut. William didn't cry much then... most of the sounds he made sounded like a Tauntaun from Hoth. My only concern at the time was keeping him alive until he could have his surgery. I slept 20 minutes at night, and caught a catnap here & there during the day. I felt the responsibility of being diligent... putting weight on him, willing him to live, holding him most all of the time. It was the scariest time of our lives.

Grandma Grandma holds her little William.


The weekend before the surgery we spent in the step-down unit. William was closely monitored, and I would watch helplessly as his breathing would jump from 66 to 88, to 72 and even to 108, then 82, 55 and sometimes drop to 30. With the nurses there to feed William at night, I had my first long stretch of sleep in over 6 weeks.

Journal entry...September 25~ 8:30am... They made the first incision 15 minutes ago. I haven't figured out what's more difficult... the waiting now, or watching William's respiration these last several days.

8:40am... The nurse just told us that William is now on the bypass machine. William was more tired than usual yesterday. It's been quite obvious that we made the right decision to stay here at the hospital over the weekend.

9:35am... Off bypass. They patched the hole, and didn't have to go back and put a little hole in it. So,... good news! Hopefully, we'll get to talk to the surgeon soon.

10:20am... We're up in the CICU waiting area. The surgeon had come out around 10 to talk to us~ everything went well. The pressures were good after they took William off of bypass. We got to see William around 11:30. His color looked really good. I didn't realize how ashen he had been looking the last few weeks. Robert and I looked through the medical paperwork and saw a summary from the surgeon to the cardiologist. It said that William does have mild to moderate Hypoplastic Left Heart Syndrome. *Thankfully, it is mild enough to not require any treatment to date.
Sept 25 Post op Braveheart
September 26~ They had to hook an external pacemaker up to William's heart last night. While he was sedated, his heart rate dropped to 90; they wanted it to be around 140. Gradually during the day, they began removing various lines and tubes. Started with the leads, then the chest tubes, followed by the stomach tube and the respirator. After he was off the respiratory, they shut off the pacemaker. William seemed so alert and stronger. He sucked so voraciously on his pacifier, the nurse gave him a bottle of breastmilk. He took 43cc's of it in record time. I was so tired, yet at the same time, I was screaming with joy inside. All the while I still held the fear that there would be an unexpected turn of events.
Sept 26 Mommy & William
On the 29th, he was discharged. After that, the visiting nurse came by a few times a week to weigh him. He was steadily gaining! Within 3 weeks, the right side of his heart had gone back to regular size. We met with our Early intervention team and set up a schedule. By Thanksgiving, William weighed 9lbs6oz... he was finally ON the growth chart.

Despite a rough beginning, William these days certainly doesn't seem like a child with heart defects. He still sees his cardiologist every 18 months to be sure everything is functioning as it should. He is in second grade this year, loves math and reading, and 2 weeks ago, just for fun, he learned all the planets in our solar system... in order!!! He loves to sing... it may be off-key most of the time, but he loves to sing! He can recite movie dialogs by heart. He says things that make us laugh, like "What do you think you're doing?" He makes us cry with joy when he says, out of the blue, "I love you".
After William was born, I found the quote by Einstein that is in my blog header. Words have never rung so clearly for me than those. Everything truly is a miracle.
Happy Heart Day William!
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Sunday, September 14, 2008

Vacation: Part Three

Rachel and Aaron wanted to share their favorite places with us on our vacation. For Day 3, we went to Snowbird.

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William, on the tram up to Hidden Peak

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going up to Hidden Peak in the tram.

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Aaron & Lucy

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From Hidden Peak

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Robert & William

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The Malone's & The Coleman's

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Sarah & Leah on the trail down to Peruvian Gulch

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Rachel, William & Robert on the trail down to Peruvian Gulch

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They were quite a bit ahead of us on the trail

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We'd walked down from way up there!

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Sarah & Leah on the lift going down.

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Aaron distracting William on the way down.

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William on the Bungee Trampoline... he loved it!

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He kept singing "We're all in this together" from High School Musical while he jumped!

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Leah does a flip on the bungee

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Sarah too!

What a wonderful day! Afterwards we headed back down the mountain and had dinner at Porcupine Pub & Grill. Yum!

More to come, but in the meantime, meet some of the children who sign in the upcoming Baby Signing Time volumes in Signing Time "Meet The Signers".

Thursday, September 11, 2008

Vacation: Part Two

William loved waking up at Rachel's house every day of our vacation. "Good Morning Rachel! Where's Leah?" was the question he asked her one morning. And oh, how he loved seeing Lucy! He was at times fascinated with her wheelchair, but more excited to be hanging out with Lucy.
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Sarah & Lucy

There was swim time
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Sarah

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Lucy & Rachel

Play Time
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Sarah & Leah playing video games.

Saturday afternoon Robert, Sarah, William and I went to visit our friend LeeAnn and her family. LeeAnn works for Signing Time, and I've visited with her on my trips to Salt Lake City in the past few years.

Funny~ I think that except for Robert and a few other friends, my closest friendships have come after William was born. The online friends I've made because he has Down syndrome have led me to form some of the deepest friendships I've ever known. Because of him, we found out about Signing Time, and from there we've made more lifelong friends. LeeAnn is one of these friends.

We had a great time at her house, and Sarah got to try their Wii Fit while we were there. My pictures came out blurry or dark (didn't have the camera set right) so I won't post 'em, but I have to admit... seeing how fun the Wii Fit was made me really want one! (I have since purchased one... and now exercise is a blast! But that's a whole other post one of these days)

More vacation posts to come, but in the meantime, have you heard about the Signing Time Scavenger Hunt Sweepstakes? If you haven't visited Signing Time's web site lately, what are you waiting for? Find clues
while you explore the new site, and enter for a chance to win $1,000!
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Why are you still here? Go on a Scavenger Hunt at Signing Time.com!!! Now!