July 23, 2009. I was sitting at a computer desk in the lobby of Arkansas Children’s Hospital trying to put into words what was wrong with my Jonah.
“God is definitely working here. On Wednesday, Jonah underwent open heart surgery for over 12 hours. I can't even begin to describe what was wrong with his heart but only 1 out of 500 pediatric heart patients have his defect.”
I was new to the world of congenital heart defects, thrown into it, virtually overnight. I didn’t see it as a life sentence, at this point. In my mind, I was believing Jonah would be fixed and we would get beyond this. We would speak about it years later, when we were explaining his scars to him or talking about how complex he was. For me, this was a temporary situation.
“Dr. Michi worked tediously on Jonah and would not leave until he was happy with the job and could consider the surgery a success. Jason and I left the hospital around midnight on Wednesday and the doctor was still with Jonah in his private room. The next morning, I arrived at 5:45, the cardiologist was already back in Jonah's room and the nurse told me that he didn't leave until 2 this previous morning. When the doctor gets less sleep than the mother, you know you are in good hands.”
I thought the world of Dr. Michi. The man is a genius and I said that many times in 2009. I would never be able to thank him enough for all he did for Jonah in those 17 days.
“Jonah was up and down all night. They had problems regulating his blood pressure. Yesterday, they found some clots in the tubing, flushed them out, and his blood pressure regulated.”
To come in and learn that your child fought all night to see the next day and I was not there to hold his hand broke my heart into a million pieces. I was only away from him for 4 hours that night and it was four of the most critical hours. I would never learn the true details of that night until I read his medical records. Chest compressions were performed on Jonah that night. We nearly lost him while we were not there. His team fought to keep him off ECMO through the night.
“Last night, Jonah had an even better night. They have taken him off some blood pressure medication and his blood pressure did not waiver. This boy is stronger than anyone I've ever met. He's a fighter. Today, he's trying to breathe over the ventilator. However, the doctor's don't want him to just yet."
By the time I wrote on this first page in his journal, several days had played out. My son was proving to be a true warrior in these few days. He was showing us what real strength was and still IS.
“I kissed him first thing this morning and his lips quivered. I think he wants to pucker up and kiss me...or lick me. :) I'll take either. His color is improving each day and he has maintained his birth weight - a whopping 9 lbs. 2 oz. The nurses adore him and tell me he's a good baby. He truly is a miracle and a blessing in our lives. He has touched so many people's lives in unimaginable ways and he's only 4 days old.”
I loved the days when I could kiss him, when I could smell him. He had some beautiful full lips. By this time, he was transforming into a miniature version of Elijah. His features were taking shape and I could see his big brother in him. He was much larger than Elijah. 2 pounds and 2 ounces larger. Elijah didn’t weigh 9 lbs until he was 6 weeks old. I remember his tiny hands would wrap around our fingers and hold on tight.
These days I will never forget and never regret. I loved Jonah from day one as much as I love him today.
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