Cincinnati Children's The heart surgery

JT was in Cincinnati for 3 weeks. I thought this was just going to be about a week stay and then he came back. NOPE!! Sure wasn’t. I got to see him 3 times while he was down there. Stacy went with me and took pictures and gave them to me as a gift. We had a great time visiting with him. I didn’t like Cincinnati at all. They were so different. They were sterile. At Dayton and Miami Valley, it was homey and nice. All the nurses were nice and the lighting was low and they kept it really nice for the babies and parents.

Cincinnati was brash and clash. Lights were blaring, they covered the baby’s faces with blankets, it was terrible. My first visit there, the nurse said I was agitating him. And was going to give him some adavant. It scared me because well, I know he wasn’t agitated he was just moving. He was interacting with me and glad to see me. He was trying to reach for my hand and well we all know baby’s coordination skills are not very good and he was still not supposed to be born yet. I told her no under no circumstances do you give my baby that. She had a fit and told me that I didn’t have a say so in it and that he was agitated. Mind you during all of this, his stats were wonderful. No heartbeat going down, oxygen great blood pressure great. He was moving that was the problem. I also threw a fit about the blanket over his face. It was like to me that they didn’t want to see their faces to remind them that a little person was in there and not just something in a bed that needed monitoring. I just didn’t feel the caring and loving that I felt at Dayton. I was not told anything was not let in on medicines and procedures. It was horrible for me. But, that is my opinion and others might have found it to be just wonderful. I didn’t.

Johnathan had his heart surgery and I must admit his heart surgeon was the best and he talked to me like I was a person and treated JT like he was a person.

What he had done was a PDA ligation which was to close the vessel that didn’t close after birth and did a banding. The banded a vessel to keep blood flow to a minimum to help with the circulation. He did great during surgery. When we finally got to see him He looked very bloated. This was a norm for him after surgery. He had one little tear coming out of his eye. He was coming out of it and was having a lot of pain. The Cardiac Intensive Care Unit (CICU), was a lot better then the NICU. The listened to me and he was given some pain meds. I stayed as long as I could. Mike had to go to work the next day, so we had to leave soon after. It broke my heart. I wanted to stay so bad. To let him know that everything was going to be ok. I prayed, and prayed, and called and called.

He got through the night and the next two days great. He was coming home. When I say home I mean Dayton NICU. I was never so happy, and I was there to greet him. He looked wonderful and his incision was pretty much healed up. It amazed me and he grew in those two days like you wouldn’t believe and he was out of the incubator. He was in a warmer. Big milestone. I thought that I would just be able to see my baby through a window. But, no he was on a warmer and I could kiss and love all over him and just hold his hand and not have to speak to him through a door. It was awesome.

How to fix a heart

In the beginning of October the cardiologist came to me and told me that they had ran enough tests and have figured out the anatomy of his heart and what they were going to do to fix it. It seemed that all of his arteries and his aorta where going to the other left instead of the right and that they were forming an aortic arch around his windpipe. This is what was making it hard for him to come off of the vent. So, she told me the plan. They would be transferring him to Cincinnati Children’s. He would be in the NICU there and they were going to do the PDA ligation and put in a PDA banding to constrict blood flow to his heart so that he could come off the ventilator and he could grow and then when he was about 1 year old then he would have the surgery to close the heart. I was happy they had finally figured something out but, scared to death of him being transferred to Cincinnati. I knew nothing about this place and it was so far away. I knew I wouldn’t be able to make it down there much. And that also meant that he would be alone in a place where no one knew him. He knew people up here. He had mostly the same nurses and the doctors where the same. Heck the cleaning lady was the same everyday. I just didn’t know what to expect and when you don’t know what to expect you get really anxious. I really didn’t want to let him go but, the day came with that wonderful announcement that he would be leaving in the next week. Ack! Not what I wanted to hear.


JT was scheduled to leave that Monday. I prayed and I prayed. Lord, please let them treat him right, don’t let him forget me. Don’t let him think I am just a nurse passing through. Let him know I am his mother and remember. Just watch him please while I can’t be there.

My best friend and how she came to be..

JT made it through that surgery and recovery just fine. Every day was an accomplishment. For the next month we just watched him grow and talked with him. Not much changed in his care. I learned all about how they have to suction him and keep his vent clear. I changed as many diapers as I could, took temps. I got to hold him weekly when they changed his giraffe incubator. It was only for a few minutes but, it was great. He was gaining ounces everyday and getting bigger.


Around this time, I had taken Stacy up there. This is big Stacy who has become my best friend. I met her through a program that we both participated in with School. But, up until this time we were just acquaintances. We spoke at the outings and get togethers but, that was all. I seen her at a school outing at Chuck E Cheese. It was a fundraiser for the school and I was taking the girls. I took the pictures that I had of Johnathan so that I could show everyone. I sat down with her and showed her the pictures. She tells me later that she was afraid to ask if how he was because no one had told her if he survived or not. But, I guess I alleviated that fear when I started talking about him. We went out to breakfast one morning and I was just like do you want to go see JT. She said sure. Just like that. I remember taking her up there and I was totally scared. I was at a crossroads of sorts. I wanted people to meet him but, yet, I was afraid, because for one he was really small. Barely 2lbs and all the stuff hooked up to him. You could barely see him. I guess what I was trying to do what I always do protect everyone. But, I didn’t have to worry about that. She met him and totally fell in love with him. After that she went up with me to visit on a regular basis. And that began our friendship. She became my support system. She helped me make decisions she talked to doctors with me. She honestly was my lifesaver.

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.

Video

Here a slideshow of JT with the song we used at his funeral.

The big move to Dayton Childrens

One of the best things that you can do for your child I believe and this is my opinion is to talk to them. Tell them about everything. What their siblings did that day, what you did. How you feel about them. Give them little pep talks. Let them know that you are there. Preemies get so agitated with touch because their nervous system is so under developed that the most that you can do is talk to them. And your love can shine through in your voice. Even reading them a story. Which we read many a book to him. Just so that they hear your voice. JT would calm down when we talked to him. He wasn’t one to get very agitated but, when he did, a nice calm authoritative voice soothed him. That and his binkie, (pacifier). He loved that thing. When JT was given his first feeding through his NG tube when he was 7 days old. ½ ounce breast milk and ½ an once of formula. The next day, his stomach started to distend and look a little purplish. He was starting to have very hard bowel movements also. They watched it for a few days. When he was 10 days old, I got a call from the hospital that they would have to move him so that they could do surgery, IF that is what I wanted. Otherwise, we could just let him stay as he was and just let nature take his course. I said, oh no!! We are going to do what we can to give him a chance. I told them under no circumstances was they to move my baby without me being there. This was the first of many emergency trips to the hospital. I was scared silly. I had no idea what was going to happen and they told me that he might not even make it the 4 minutes to Children’s. I was really scared, but, at peace with my decision. I knew that I had prayed and gave it to God and He knew what he was doing. I actually got there in record time. This was one of the few trips that my husband did take with me. I got there in time to sit with him for a while. It took 2 hours for the neonatal transport to get there. I was starting to get upset, because if this was such an emergency then why were they taking so long?
When they finally arrived. So much stuff started happening. They got report on what meds he was on his hyperal, all of his vitals, what settings where on his ventilator, and his history of surgeries and so forth. A lot of information, and most of which I didn’t understand. They had me take his temp and change his diaper. Oh man Oh man, was I scared. I knew they were having me do this because they thought that he wouldn’t make it to the hospital. Both of the transport team had another surprise in store for me. They kept telling me to come here. They needed my help with something that only I could do. I was scared to death because I had to climb through a lot of wires and tubes to get there. Next thing I know they are plopping him into my arms. I was in shock. They were bagging him so that they could get all of the ventilator lines switched over. That took probably about 1minute but, it felt like about 20. She kept telling me to just cover him with kisses, so that is what I did. I almost most drowned him with my tears. I never realized how heavy a baby that is bearly 2 pounds feels in your arms. I mean, he put a weight there. A weight that I couldn’t bear letting go of. A weight that I still ache for today. They finally got him all packed in the transport incubator. Let me explain this thing. It has everything on it that they will ever need. Monitors, ventilator, meds, you name it, it has it. Very awesome piece of machinery.

As we were going downstairs they told me not to be alarmed because they are going to have the sirens going. That is only so they can get there in a hurry. And under no circumstances are we to follow them. They said that would cause accidents. They gave us an alternative route to take. They also explained to us what was going to happen once he got up there. They let us know that it might take a long time to get him stable and set up before we got back there to see him. And then it would be a really quick visit and a quick talk with the surgeon. She gave me a packet with phone numbers in it and his number so that when I called I could get information. She also gave me a hug. I will never forget that. Both of them where so, I don’t know empathetic to the situation and they treated him so good and didn’t treat him like a number like he didn’t deserve to be treated with respect because he was broken.