Remembering. . .



It feels like yesterday in many ways. The smells, the sounds, the people, the activity, I remember it all very clearly.

I woke up at 4.30am, after a very sleepless night at the Ronald McDonald House, to shower and prepare for a long and uncertain day. We had to have Bean to pre-op by 5.30 am. It was a big day for him.

The night before, after having dinner with friends from Gainesville who came to be with us, I was sitting in their hotel room with Bean. My friend, Kim, and I were loving on him when he offered the sweetest smile. It was his first. It was as if, after five months of struggling to stay alive, he knew what was coming and was excited.

When I woke, that smile was the first thing I thought about and it kept me going all day.

My little Bean had been in heart failure since the day he was born (two months premature) and hadn’t had the energy to smile. His smile the previous night was a sneak peak of what I could expect post-op and it gave me confidence that morning. It was a day I had been dreading yet I woke up ready for it. Partly because I just wanted it behind us and partly because I knew Bean was finally going to be able to take a deep breath without turning blue, eat without sweating, begin the big business of growing and learning and laughing. I could hardly wait.

But first we had to get through August 31, 2005. It was a long day and I remember almost every detail. I remember Bean’s whimpers as they stuck him repeatedly trying to find veins in his dehydrated little body. I remember wishing I could feed him. I remember the moment pastor j and I had to hand him over to the o.r. nurse. I remember every call to the parent waiting room letting us know what was happening. "He’s sedated. . . he’s on bypass. . . he’s opened up. . .patches are on and looking good. . . Dr. Q. is closing. . .he’s off bypass. . . Dr. Q. will be out to see you soon."

the day after surgery, getting his bandages changed

In between all that, much time passed. I remember pacing the halls. I remember where I stood on the outside deck to talk with my parents and give them an update. I’m pretty sure that was the first time all day I broke down. I remember wandering the halls and seeing every t.v. streaming the devastation in New Orlean’s after Hurricane Katrina. It was surreal, to see the devastation a few states away caused by natural disaster and to look around the children’s hospital where so many kid’s were fighting for their own lives because their bodies had betrayed them in one way or another. The realities of a fallen world.



But that day, five years ago, wasn’t about me. It was about my Bean. About his tenacity and his strength. He was 9 pounds and some change at five months old. His cardiologist wanted to get him to a year because kids do better with open heart surgery with a little more weight on them, but Bean had other plans. His little ticker, the size of a walnut, just couldn’t make it that long. And, I’m pretty sure he was just itching to play with his older brother.


That day, as with every day since his birth, Bean taught us about perseverance, hard work, love, patience, acceptance and trust. He came through it all beautifully and, after a few hiccups in picu, woke up ready to eat, play, and explore.


getting ready for home therapy a few months after surgery

Five years later, he works just as hard. He works hard in therapy, in school, and at play. He embraces life and all of us fortunate enough to be in his world. I have watched him impact so many with his warmth, love, and acceptance. What a privilege to be Bean’s mom!


saying goodbye to his teacher of more than two years who had such an impact on him


ready for his first day of kindergarten

And, what a privilege to have access to the kind of medical technology that makes it possible to open up the chest of a 5 month old baby and apply pig skin patches to the holes in his tiny little heart, thereby correcting the flow of blood, and prolonging his life. Amazing!

playing with his brothers in the mountains

*******************

Bean saw his cardiologist last week for an echocardiogram and general check up. We were thrilled to get the news that his heart has healed so perfectly that unless a doctor was looking for those patches she/he would likely not see them. The tissue has grown over the patches so well that even if he experiences some leaks at any point in the future it would be a very different scenario than what we faced five years ago. After Bean took over the appointment by listening to the doctor’s and nurse’s heart with their stethoscope they sent us on our way and told us we didn’t have to return for two years! Two years!

It’s a great feeling!





2 comments:

momtofourgirls.Kari said...

What an awesome anniversary and terrific news about Bean's heart! Thank you for sharing such a sweet and incredible story :)

Kathy@ Gone North said...

What a great post!!
I have a brother with similar problems, though not his heart. He worked for my Dad for yrs., driving heavy equipment. My Dad retired & my brother now works in a restaurant, they love him there.
We just had a party for his 50th b-day.
Thank You for sharing your sweet story.

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