My other children

I had four other children at home that I had to take care of. They had to go to school and I had to get them there. I really didn’t have a support system that I could be with him twenty four hours a day. I was bitter about that for a long time and I think that still to this day that makes me mad. It feels like he was ripped off in the mother department because I couldn’t spend every second of his life at least within a few floors of him. I had to go home and take care of kids. Sometimes I resented the children too. I know it wasn’t their fault. I knew that but, I just was mad that because of them. Because I had to take care of them, JT got robbed of me. But, while I was there, I gave him the best of me. I always made sure that he was surrounded by happiness. If I thought that a nurse wasn’t treating him right you had better make sure they heard about it. I didn’t care if they were having a bad day. It wasn’t his fault. He needed to be surrounded by love and laughter and that is what he got. But, sorry, I guess I got off on a tangent. I have 4 girls. JT was my first and only boy. Well, that I gave birth to that is. They were Ashley12, Harley 10, Stacey 9, and Mikayla 1 ½ I also have a step son named Timmy that was 12 at the time he was born. They loved the fact that they were going to have a baby brother. They were so excited. And they weren’t upset that he was in the hospital. They were just upset that they couldn’t play with him like they wanted to. During this whole journey I always told them the truth. I never mislead them about anything. I didn’t keep the bad times from them, and we always celebrated the successes. I made a pact with myself that I would always be truthful with them. And believe me there were times I wanted to lie but, I knew that would hurt them in the end. Let’s face it children are not stupid. They can pick up things in no time flat. If I would have lied to them, they would have known and then they wouldn’t have trusted me to be truthful with them.

Back to mister JT. I called that night and into the next morning oh I would say about 25 times. I kept getting the he is resting comfortably. That is not what I wanted to know. I wanted to know the low down dirty facts. Did he have wet diapers. How was his breathing? Did he have any Brady’s. Not resting comfortable. That doesn’t satisfy me. And a lot of them up there learned that I needed more than that. You see JT’s care became an obsession with me. I wanted to make sure he never got diaper rash, he never got bed sores, that his head never got flat on one side from laying on it too long. I felt these are the things I have control over. I can let them know I think he needs turned, I think he needs repositioned. I didn’t have any control over anything else so you had better believe what I had a say over, I was going to say. Now, whether they listened to me was another thing all together but, we all came to respect and love each other.

JT's NEC surgery

The whole time over in the car, I am freakin out. I do that all the time. Freak out before I get there so that when I get up there I am all freaked out so to speak and have vented everything so that when I get up there I can keep my head and try to listen to and understand what is going on. When we got there we went straight to the NICU. I think I sat and looked in that window watching even though the partitions were up for the whole 2 hours and 5 minutes it took to get him stable. Finally when we were able to go in we had to do that wonderful lovely scrub they make you do. It seemed to take forever. I never knew hand washing was such a task.

The nurse was talking to me the whole time I didn’t hear a word she was saying. Mostly just he is very sick and the surgeon is waiting to talk to us. The only thing I cared about was waiting to make sure he was still breathing. OH boy, he was and they were already prepping him for surgery right there. They gave me a minute to say hi and talk to him. Here began our journey in Dayton Children’s NICU.

I met with the surgeon. He really concerned me because he was southern and seemed to talk and move so slow. I was afraid that he wouldn’t be able to get stuff done fast enough. But, he explained everything. Very well I might add. They were going to make an incision right beside his belly button. They were going in to get all of the necrotic (dead) bowel. He wasn’t sure how much there was in there but, he had a feeling it was going to be a lot and he wasn’t sure if he could save any. He told us that IF he came out of the surgery than he would have a double barrel ostomy. This is where you pull both sides of the bowel out of the body so that the feces can drain into a bag, known as an ostomy bag. Then he said, let’s move now, I don’t want him in pain anymore and the sooner that we get him down there and started the sooner he will be comfortable. I got to walk him down to surgery. Let me tell you that is the scariest walk of all. Every surgery is scary, and is a long walk. It felt like going to the electric chair. You know it is going to happen. You know you have no choice and well, you just have to do it. But, it takes forever. We finally get down there and I talk to the Anesthisologist. He explains to me what they will be using is a paralytic. He will be paralyzed so that he can’t move. Everything will be monitored and the ventilator will be breathing for him. During his last surgery we found out also that it takes a little bit more for Johnathan to be anesthisized than normal because of the morphine that he is on. So, I passed along that information. He said thanks a mom that is informed. I love that. And then in he went. Not before the surgeon came out and told me to go get something to eat this could take a few hours. He said go somewhere off campus get a burger and relax. Ok, right you are going to cut my baby open don’t know if he is going to live or die? And you want me to what???? Relax??? Ok, whatever, but, I was hungry and after just having a c-section, I knew that I needed my protein to keep my energy up. JT’s surgery started at 7:35. We went got something to eat and got back to the hospital in time to get a page saying that he was out of surgery.
We met the surgeon in the waiting room. He said that he had to take a considerable amount out but, he still had a lot left and for right now we have to watch him and monitor him. Otherwise he made it through the surgery great.
Thus, began a ritual. Johnathan had 9 surgeries, after everyone of them, I waited in the hall to watch him leave to go up to the 4th floor. They do surgeries on the 2nd. I would not feel any sort of relief that he came out of it until I seen him being wheeled out and heading up to his space. Michelle who had brought him over who was the respiratory therapist brought him out and slowed down as she passed us so that we could get a look. He looked swollen but, other than that his stats and everything looked really good. We didn’t get in to see him until about 10:00 that night. It seems it always takes a long time to get him stable after a surgery. All I could do was keep looking through the window watching as they worked on him. When I finally got in to see him I was so exhausted. I was just happy to see him. He was still knocked out. They were going to keep him on a morphine drip to keep him out of pain. Even though he was out I talked to him and let him know that I was there. They left the lid to his Giraffe incubator up. The Giraffe is an awesome machine. It comes equipped with a scale so that the baby doesn’t have to be taken out to be weighed. The lid lifts up so that it becomes a warmer. It has a lot of other gadgets on it too. And it is all digital. I got to give him a few more kisses and then I had to leave. That is really hard too, leaving my son in the care of someone else. I didn’t know them, they didn’t know me but, they were going to be the ones taking care of him whether I liked it or not. I felt I knew what it felt like to have Children Services come and rip your child from you and say that you weren’t going to be responsible for them anymore. My heart was hurting more than I could ever explain. It was like someone was ripping it out of my chest. I told him good bye.

And so the journey begins....

Grief, it is a terrible word. You never want to go through it. I never thought that I would have to deal with it. I thought I could live my life and never be touched by it. Yes, I knew my mom, grandparents, and so forth would pass away, but, when I started my family I never even thought of losing one of my children. A child is not supposed to die before their parents. They are supposed to bury their parents not the other way around. I never appreciated that before. I never really thought about it. I just couldn’t fathom that happening to me. Well, it did. And in this little book here you are going to learn about my child, and all that we went through in the NICU and then I am going to talk about grief also.
Having a child changes your life drastically. You are no longer a selfish being only out for yourself. Your whole being is protecting and loving that child with everything you have to see them reach adulthood to live out on their own. You have dreams for them which they will probably not accomplish as they are your dreams and goals and not theirs but, you don’t think of that. You just look at this miracle that you have created and think nothing of how some children struggle and fight to survive to take one breath at a time. I have had 5 children. The first 4 were girls. They were born with no complications. Sweet and beautiful like it should be. My 5th child was Johnathan, my sweet baby boy. He was born 15 weeks early, and from the moment he was born, he had to fight a fight I know if it was me that I wouldn’t have fought. He is still the strongest person that I have ever known. He never gave up. He was born with ASD (atrial septial defect), VSD (ventrical septial defect), premature lungs and everything else in between. He weighed in at a whopping 1 pound 15 ½ ounces. And was no bigger than a Barbie doll at 13 ¼ inches. He was born by emergency cesarean section because my placenta abrupted. I remember the first time I seen him through my narcotic induced eyes. I seen this very very tiny knee. I feel in love with that knee and I asked the Lord to please let him make it through the night so that I could see him. Johnathan didn’t have much of a chance. They gave him 24 hours. He made it. I went to see him as soon as I was able and it was very scary seeing all of these machines. And this little itty bitty baby amidst of it all. But, to me he looked just totally perfect. I seen a baby that was my son. I just couldn’t believe it. My son. I had never been able to say that before. I just kept repeating in my head. My son, My son. I have a son. From the day he was born, I gave it all to God. I knew that whatever the outcome God knew what he was doing and that it would be ok.