Friday, September 17, 2010

Jonah, Joey, Jo-D, D-Man, Deedlicious

I have a 12 year old son, Jonah. Jonah was born after a near perfect pregnancy, with a knot in his umbilical cord, wrapped around his neck twice, and then twined around his entire little body. The doctors seemed to think something was wrong even before he was born, though all of his tests came back perfect. We were all so glad that everything turned out okay, despite the doctor's worries. But, for some reason he wouldn't wake up enough. You know that wide awake period that most newborns have shortly after birth? He never had that alertness, the wide open eyes that try to make sense of the world they have just joined. I asked a nurse about it, but she just replied that some babies were sleepier than others, but it niggled at me.

The day we went home from the hospital we had a lot of trouble waking Jonah up to eat. He went six hours without nursing, and I was starting to get really worried. When the day dragged on and calls to the nurses' station assured us that he would wake when he was hungry, we hoped that everything was okay, but we were nervous. By the next morning we knew something was wrong. Jonah had not really woken up to nurse, and was now not very responsive and exhibiting some jerking movements. We piled into the car and took him to the ER. The staff put us in a room where a doctor eventually looked him over. He was not as responsive as they would have liked, so he ordered a CAT scan. He walked out, and I looked down at my tiny son. I was so scared, and it felt even worse than when Kenzie had gotten sick as a newborn.

I was looking down at this tiny little guy, and he started to turn bright red, and his little body just seized up. I screamed for someone to help us. No one even looked our way. It felt like that nightmare where you can't scream and you can't move. I yelled, no one responded. My husband, my Douglas, walked out of the room and roared...ROARED for help. People came running. I still don't know if I made any noise or not when I yelled for help - but they were finally coming. I thought my little baby was having a stroke. They whisked him away to start working on him. While they were getting him stabilized the doctor said that he felt they could not handle Jonah as well as the Children's hospital, so they were going to life flight him to Akron. I was scared and relieved at the same time. We had gone to Children's with Mackenzie, and I knew how amazing the hospital was. When the life flight nurse arrived, she took over, and I grabbed my Douglas and just prayed. I prayed to my Blessed Mother. I asked her to watch over my son, and to beg her Son to protect him.

The life flight nurse, who was as beautiful as any angel, discovered that Jonah had 0 blood sugar. ZERO. This shocked me, but I knew he had not eaten. We hadn't been able to get him awake, and had been placated by nurses since his birth. They never checked his blood sugar when he was born, but I think his umbilical cord had been pinched when he flipped and got the big knot, wrapped it around his neck, and around his whole little body. The doctor knew something was off, but could not say what it was. Now we knew.

The angel nurse who flew with Jonah promised me she would take very good care of him on the flight, and that we could see him as soon as we arrived at the hospital. Jonah spent a harrowing five days in the NICU while they ran test after test trying to find the cause of what turned out to be a hypoglycemic seizure. Doug and I spent the days with him and the nights taking turns while the other got some sleep. We were so scared that something was terribly wrong, but every test showed that he was fine. We took him home on an anti-seizure medication, which the doctor weened him from a month later. Jonah  and I spent the next 18 months nursing. Day and night, night and day. I was NOT going to let that happen again. If he wanted to eat, he ate, no matter where we were, what time it was, or if he had just nursed. I'm still not completely over it. I watch over his eating more than anyone else's. Not that I need to, Jonah, now 12, eats like a horse. He goes through at least a box of cereal everyday all by himself. Breakfast, snack, regular lunch, snack, regular dinner, snack.

My Jonah has been through so much because of that rough start. He has some learning challenges that, in my mind, are a direct result of the problems he had at birth. He has a seizure disorder, and has undergone many tests,  and takes medication every day. The meds change the alkaline in his saliva, which causes severe tooth decay. He has put up with some pretty horrible dental procedures to try and correct this problem. Through all of this, he has been brave, strong, and completely uncomplaining. I am so proud of him.

Jonah is, of course, much more than his medical issues, but this is one of those things that will always haunt me. The night before the first seizure he was awake, and screaming. Doug was walking the floor with him. Why didn't I feed him? Why did it not even occur to me to try? We had, at that point been up for several days straight with no sleep  (chicken lice - whole other post!). It is amazing what sheer exhaustion will do to your judgment.  I have had nightmares ever since where I have a new baby and I forget to feed him. He nursed a lot in the hospital, through his sleepiness. The doctor tried to tell me not to let him do that - he camped at the breast - but I am so glad I didn't listen! It could have been so much worse.

As an aside, I know this all would have been so, so hard without our family. My parents kept our girls, Megan and Mackenzie, while Jonah was in the hospital, and made sure they were with us as much as possible. My brothers and sisters took turns with them, too. Both of our parents sat with us, brought us food, and comforted us. It would have been so, so hard without them - so, if they see this - thank you. I truly don't know what we would have done without you, especially during this particular crisis, and Mackenzie's.

In the end, Jonah is a healthy 12 year old, who also happens to have a seizure disorder. He has a seizure every 5 to 10 seconds. They are tiny, and he doesn't feel them, they are doing no harm. But, with that kind of frequency one is bound to go to the body and become a grand mal every once in a while, so he is on the medication to keep that from happening. He's beautiful and funny and clever. I pray that he knows, and God knows  how very much I love him.


  1. Jonah D., my first "Main Man" who will forevermore get to claim the title as the first guy in my heart! He is such a special little man! You are correct Megan, that he has endured so much for such a little guy.

    One thing I notice in your posts, however is how you never mention the strength you have. I remember being at the hospital, watching you, saying Hail Mary's with you and being astounded by your strength.

    You have been through so much, I cannot begin to fathom how you manage. You taught me to count on our Blessed Mother. It was seeing your unwaivering devotion and the strength that resulted, that has helped me to also adore Her.

    You Megan, are an inspiration. I love you and am so blessed to have you as an example.

  2. Okay, don't make me cry! Plus, all I can remember from the moment we got to the hospital until they told me he was okay is crying my eyes out. THE. WHOLE. TIME.


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