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Liz Stokes

The Worst Day of My Life. Part 2

June 26th was awful. I’ve loved on and totally fell in love with my son. I’d spent a week learning how to care for my sweet boy and now I’ve been prepared for a nightmare- a life saving surgery that could have major complications, an awful recovery, and well you know he may not make it through it. Do you know how difficult it is to watch a team roll your son away knowing this might be the last time you see him? It’s a gut wrenching feeling.

Carter went into surgery at 7:30a. He was the first on the list for the day.

Waiting to hear your phone ring every hour and have other calls at the same time is extremely challenging especially when the billing department was trying to contact you multiple times to go over details that you have constantly redirected to your adoption agency because they involved birthmom and NOT you.

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So finally at 9a we received our first phone call. The team was able to open his chest and get to his heart however they are working to hook him up to bypass because his anatomy is more challenging then expected. The nurse said that he’s doing well and the surgery is going to take longer than expected.

10a The shunt is installed. They are getting a live echo now and will then work to get him off bypass. Bypass is the hard part.

11:30a As they were weaning Carter off of bypass his saturations dropped really low. They needed to put him back on bypass, go back into surgery, and install a larger shunt.

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2p Final update: Carter is out of surgery and he’s not out of the woods. The next 48 hours are critical and the coming months just a little less than severe. It’ll be two or so hours before we can get upstairs to see him. The team decided to leave his chest open just in case they need to go back in and if he manages they will close it on Wednesday. He has a pacemaker because they had to shock his heart a few times to get in back in rhythm. Dr. Bryant doesn’t think that it will need to be long term. The shunt is off a different artery than originally chosen. We checked into the Ronald McDonald House this afternoon so we will have a quiet place to sleep, nap, shower, and eat. We don’t have to stay here but it’s a safe place to keep our belongings and get a meal. We do have to go in and out once a day.

7p: I don’t know how I did it. I really don’t know how I was able to put one foot in front of another and enter his room. This was the worst site, worse than a car wreck. That’s my baby, unconscious, in a hospital bed with his chest open. The nursing staff was so kind and warm. They had even wrapped him up in his Mickey Mouse lovey. I felt a hand grasp mine as I looked over my little boy. I took in each tube, his coloring, his fingers, fingernails with dried blood under them, his curly black hair, his toes, the lines coming out of his feet, his thighs, his catheter, his four chest tubes, his picc line laced with 10 tubes coming out of it. Then I realized I wasn’t alone and that my hand was holding someone other than my husband’s.

It was the nurse, Molly. I will never forget her. She grasped my hand, the tears started to stream down my face, she carefully explained every little detail, line, cut, bandage and so on. She reached the final piece pointing with a green gloved hand- it sank in and out of his body– out of a rich dark pool of fluid, the rhythmic lump, it looked like a slime glob that had hardened, dark red moving in his chest. His heart and right on top next to his heart? A silver machine- his pacemaker. The single most important machine currently keeping my son alive.

All I could say and think was Wow. I saw his pacemaker working to keep his heart in rhythm and his heart beating inside his chest. How many of you can say you’ve seen the insides of your child? Until today I’d never seen or imagine I would ever see the inside of a premature baby right in front of me.

I lost it all together. The hand that was in mine moved up to my shoulder and was so thoughtful with reassuring words like “he looks really good”, “the surgery went really well”, “his numbers are outstanding” no words made it to my core.

I walked over to Rob, buried my head in his chest, and sobbed. Another light bulb had turned on. As a Mom- there was absolutely nothing I could do for him. This was all up to God and Carter.This is their plan and their fight, no mine. I was shattered.

Nothing was or is in my control.

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