Heart Surgery 2 Years Later

Take a look at this kid. Would you ever know that he had heart surgery at just under 3 months old?


   

I can't believe that it's been 2 whole years. I still can't believe we all survived the anticipation of preop.

I cried with my friend Julie the other day when she wondered how she'd tell her oldest son that the baby in her belly hadn't survived, if that's what happened (God forbid). I cried because I was sad for her & because I remembered that feeling. I used to wonder how I'd tell Meredith if Sean didn't survive his surgery. I wondered how she'd react to seeing him sedated with tubes & wires. I didn't have any answers for Julie. I feel bad that I couldn't offer up any wisdom. I had never come up with an answer myself. Thank goodness I didn't have to.

It's hard. It's hard to relive too, but it humbles me. I relive the same fear and anticipation that I had when I handed him over. I feel the guilt & angst I felt at feeling as if I had done something wrong to cause his heart issue.

Then I look at him. I watch him playing. I see him goto school. And I see how his CICU nurse likes his videos & pictures on Facebook. And I'm humbled once more. Without modern medicine. Without nurses like Eunice. Without surgeons like Dr. Bacha. Without a whole village of people keeping Rob and me calm and reminding us that we had chosen the best to care for our son..... We would not have made it through with any bit of sanity. We would not have survived and certainly would've fallen into an exhausted mess of parent.

Being silly. Thank goodness chicks dig scars right?

My walking fool at the pizzeria

   

Independence.......

This year independence means a lot more for me. Last year for the 4th of July we were anxiously awaiting the arrival of the newest member of our family. Sean was safely tucked away in the comforts of my belly. We knew he was safe there. He wouldn't have any heart issues in there. Of course we knew he'd have to come out some time.

I had really hoped that if he was going to come early (I was due July 19) it would be on July 4th. Unfortunately for me it didn't happen. I'd have to continue on through some of the hottest days on record just a little bit longer. I so longed for my independence from him. Don't get me wrong... even though I knew he was safe and even though having him in there gave me the freedom to tote my big behind around in a bikini just a little bit longer..... I longed to.... yearned to see my toes without having to contort in so many different ways. I longed to be able to sleep without swinging my big belly over every single time I turned in my bed.

I needed to be just me again. Not me plus 1.

Of course he came with much fan fare and we decided on a date for his heart surgery. October 4, 2010. That was exactly 9 months ago. I handed my son over to the best surgeon & his team and prayed hard that he would be returned to me with renewed independence. I prayed that he would be freed from the oppression of a bum ticker. And he was. He was given a new lease on life. His bum ticker lived to beat again and beat better.

It's Independence Day 2011 and I'm thankful for the men & women who have & continually fight for our freedom. I'm also thankful beyond words that my son is here, alive & well.

Unsung Heroes

Have you ever thought about who your heroes are? Until recently I never really had. When I think about the events of my life recently 4 people really come to my mind. They would be Rob, Meredith, Sean & Eunice C., the cicu nurse that cared for Sean.

The reason I started thinking about it was because we started to get the bills from Columbia for Sean's surgery. I started thinking about what I was actually being charged for. Now... his surgeon is worth his weight in gold as far as I'm concerned. I would've given that man my left leg to ensure Sean's surgery went well & the outcome good. And it went well & the outcome has been nothing short of a miracle. But from a surgeon of Dr. Bacha's caliber, I'd expect that.

One of the bills we received was for the dr that called Sean "a downs". Her exact words, "He should go on cpap because he's a downs". She billed our insurance company $3,800 per day. I almost had a stroke. What the hell did she actually do? I think I saw her maybe 4 times. I mean I saw her on the floor, but I don't think I saw her near Sean, but 4 times. Eunice was with Sean constantly. She was in his room making sure he wasn't bleeding to much. She was there making sure the new resident didn't prescribe the wrong meds at the wrong intervals. She was there telling us that Sean would be ok. She treated Sean as an individual person. Not as a typical kid with down syndrome like so many other people had. She actually listened to us as his parents and understood that I would do whatever I had to do in order to make sure my baby was ok. She made us laugh and never made us feel stupid for crying. She told us everything would be ok. I don't know that she actually believed it would be right after his surgery, but she made us believe it. She made us laugh when I was hooked up to the moo machine and she had us rolling with laughter when Sean cleared the whole room after he pooped. She made us feel at home in the cicu. It takes a very special kind of woman with a very special dedication to her patients to be able to make someone feel at home on the cicu.

Eunice has an amazing quality about her. To us, she was strong & sincere. She didn't take anyone's bullshit and everyone respected her. You know why? Because she knew & knows what she's doing. She's my unsung hero. I have no idea how many lives she has touched in her many years in practice as a nurse. I have no idea how many lives she will touch. But what I do know is that without her my son would never have done as well as he did after his surgery. It wouldn't have mattered what surgeon performed the surgery. Without Eunice Sean, nor his parents, would've fared any better. I hope she knows that we have not forgotten about her Yankees tix.

That's not to say that the drs don't have their merit. They do, but not $3800 per day's worth. Especially when they're not doing much.

Here we are 6 weeks post op and Sean is doing amazingly well. There are some days I wonder just how uncomfy he is in certain positions because of his breastbone, but he's an amazing little boy with a lot of will.

His scar hasn't changed much in the last couple of week, but I don't think I expect it to for quite some time. When he's older maybe I'll use some mederma to lessen it's appearance. But then again.... maybe I'll leave him with his reminder of his journey.
















He's holding his head up again. THANK GOD!!!! He's holding it up the way he should be. And he's sitting so nicely in his bumbo seat. After about 10 minutes he starts to get tired and his head starts to hang. Meredith is always right there to pick it back up for him.



I evicted most of Meredith's toys to her room finally. I put them in the armoire. When I showed it to her, the reaction couldn't have been planned better.



We've made a new friend in the neighborhood. We met on a message board for parents of children with down syndrome. I put the call out for folks in the city, like the bat signal, and she answered. It turns out she lives 10 blocks away.

She & her boyfriend have a 3 year old with down syndrome. Her son was so cute. We went to the playground and apparently leaves are the way to go. Meredith showed Seth how to throw leaves and before we knew it there was a party going on. 2 more kids joined in the fun.

























And here are some pictures of Rob & me taken by Suzanna Finley (www.suzannafinley.com). Throughout our journey so far, we've come out happy. A hell of a lot more tired, but happy. I look at my husband each day and see how hard he tries to make me happy and help me smooth out the wrinkles in my day and I just melt. I fall more in love with my husband everyday. He is my hero, but I sing his praises everyday.
















And some recent pictures of the mini pests. They're my heroes too. They know how to melt my heart in ways I never imagined possible.