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Liz Stokes

The Beginning of The End

I just don’t know really where to start so I’ll start with February 2nd. Carter began retaining water and wasn’t urinating again. The previous day was such a shock to the entire staff. The night Rob ran into Dr. Bryant he was on his way to have the “talk” with us. He was in total surprise to see the improvements Carter had made that day. The next day he reverted back to not good.

Looking back it just sucks. The 16th is such an awful day for me. I wish I could go back and put my foot down to say NO. So I could’ve bought more time with him. I’ve since seen babies with full Glenn’s and partial Glenns that are two and four years old. Could it have failed like the bivent? Absolutely. But I only wanted more time. Like everyone else in this world.

Carter was failing and failing fast. His body was retaining so much fluid and his belly was as hard as a rock. The doctor took an ultrasound around midnight and determined the fluid to be fluid and not blood so he installed a drain in Carter’s abdomen to relieve the pressure. He did this at 1a in his hospital room and we all stayed to watch. Well I sat but Rob watched intently.

It happened. Frank. Red. Blood. Came pouring out of the drain. I knew but I was reassured that until they got the lab results back that there was still a small amount of hope that it was diluted blood and not all blood and it could possibly be fixed. I knew this was it. After the drain was installed we were encouraged to go back to the Ronald McDonald House to rest and try to get some sleep. Mistake number 2. I listened and went.

Around four or five hours later we got a phone call to come to the hospital that Dr. Bryant wanted to meet with us in about 40 minutes. We went.

Yep. It was that meeting. No tears from Dr. Bryant this time. It was frank red blood Carter was actively bleeding from somewhere in his body and between being on ECMO for 18 days and all the procedures he had been in there wasn’t anything left or any part of him to utilize to help. He was dying.

We had already prepared himself and to be honest. We knew too. There was nothing more to be done for Carter. It was time to say goodbye. We could take as long as we wanted but know we were beginning to cause him harm and more pain.

We called our family. We told Dr. Bryant we’d be ready tonight. He cleared his schedule for us so he would be ready when we were ready to say goodbye. He explained what would happen and the procedure.

Damnit. Really? Modern medicine is a blessing but seriously? No one should ever have to walk back in knowing this was it. There’s no more and no hope. Especially for the fourth time in our lives. Trust me without a doubt this process never gets easier.

Rob’s mom, dad and sister came as well as my “sister” Abby. We held his hand, played his favorite movie, we prayed over him, we hugged, we loved, we did all we could do but I missed my baby, he wasn’t there, he was in a drug induced haze.

I miss my baby more than you will EVER know and ever comprehend.

More later this is all I can handle today.

I love each and everyone of you and I can’t tell you how much I wish I could reach out and hug you right now.

February 2nd. CHD Awareness day.

We wore red for Carter:

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