Picture Story

These are pictures of Johnathan from his first pictures and a couple of him in Cincinnati before his heart surgery. He weight was from 1lb 13 1/2 oz. to 3lbs 4 oz.

Another surgery and Frustration

We found out that the next Wednesday he would be having surgery for ROP (Retinopathy of Prematurity) again. This would be 3 surgeries in as many weeks. It was getting old. Not for me but, for him. I just hated to see him hooked up to that vent again. They were hopeful that this would be the last eye surgery.
I remember Retta walking up to me and letting me know that things would be ok. She told me that she understands that it is hard to watch the babies go through everything that they have to go through and then when you feel things are looking up. That is when you get knocked back down again. The whole time she is beating me on my back. I really don’t think she understood how hard she hit people sometimes. But, it was comforting. It was comforting that if no one else did she always took the time to stop and say hi to me and give me a healthy pat on the back and just sit and talk with me for a minute or two. She’d also tell me she’d say kid, ya just gotta love him. If there is nothing else you can do you just gotta love him. She was like that. She so totally loved each of those babies up there. Like they were her own. She told me that if anything happened she would take JT home with her. She just loved him so much. She wasn’t the only one. Many of the nurses said that. And they all loved him so much.

When you are in the NICU, even if it is only for a week. They become a part of your family. They become advocates for your child. They think of your child as theirs. Which I felt was a good thing. Other people may not see this as that. But, I knew what was going on, I knew that if a decision had to be made and that I could not be reached for one reason or another, than, they would make the best decision because they knew what we wanted. And they respected that. They always rejoiced in his first just as much as I did. I remember on time Lisa was working with him and she had told me before I went up there that he had smiled a real smile at her. She told me this again when I got up there. As I was leaving to get something to drink she ran out the door because she couldn’t remember if she had told me yet. I just loved it. And you could just see the joy in her face over the fact that JT smiled a real honest to goodness smile at her.

I think he had that effect on everyone. They just loved him to pieces. I was very happy for what they did for us. And can never say thank you enough for all of the love they showed him during our time there. I really didn’t have any family support during this time. My husband didn’t go up a lot. He would stay home with the kids so that I could spend as much time up there as I wanted. But, I seen this differently at the time. None of my family could be here with me to support me. They lived over 100 miles a way and couldn’t be here. Mike’s family lived 10 minutes from the hospital and didn’t give us any support either. They were all afraid to even try to get close to JT. I took it as a snub. I really had bad feelings for them and still harbor a few. I think I just wanted everyone to love and experience him the way that Stacy and I did. I didn’t think of the oh it would be too hard for them. Because well, this is a baby we are talking about. A baby who needed to be shown all the love in the world. I came to realize though that JT had all he needed he was surrounded by people that loved him. Did not pity him. And were fighting right along with him. The few visits that he had with family members I felt very uncomfortable and strained. I was always afraid of them passing him germs and making him sick. Afraid they were thinking bad thoughts about him. Didn’t see him as I did. Just a baby. A cute little pudgy baby with a big personality. So, I guess in the end, looking back he had what he needed. God knew what he was doing even if I didn’t.

A reflection..

His poor tummy looked terrible. He looked like he had been put through it one to many times. At this time he had 5 scars. 1 from his pda ligation that was done when he was 5 days old. His fist bowel surgery when he was 10 days old. His ostomy site. His open heart surgery, and the surgery to reconnect. He had bumps and valleys everywhere.

Sometimes I would look at it and ask myself if it was worth it? Did he deserve to go through all of this? Why was he going through all of this? There had to be a reason. Surely, we couldn’t loose him now. Not after all of this? I asked God this all the time. Why him? Why any child? I looked around the NICU and seen babies everywhere that just had to fight to live in this world. Makes you wonder what they were thinking. I seen the parents we all looked beaten down but, ecstatic at the same time. I seen some parents that were there all the time and some parents I never seen. I never judged them because I know how hard it was to deal with a child in the NICU. There were days I didn’t think I could go in there and be cheery for him. But, I did because honestly, at that point in time he was my life. He was my heart and I loved him more than I could possibly love anyone in my life ever again. I know it is wrong to say that especially since I have other children. Not that I wouldn’t fight to the death for any of them. But, Johnathan I just seen and watched him and all that he went through because my body just couldn’t keep him in there and I felt I just needed to give him more love. I don’t know if that makes sense but, every minute of my day was JT. I had to get stuff done quickly. I had to make sure that this this and this was done, just so that I could get up there to see him just that much faster. Everything centered around him. My conversations with my husband when I did see him was nothing but, JT. I didn’t really do anything that wasn’t for him or to get to him. Everyone always asked me about him where ever I went that knew about him. People called me to find out how he was e-mailed me. It was all about him. As it should have been.

After the surgery

When we got in there he was out he had a paralytic to keep him still and on top of the anesthesia and the pain medication well, let’s just say he had no idea what was going on and wasn’t feeling anything. Stacy and I stayed as long as we could we talked to him and held his hand. I washed his eyes and lips because he was a little gunky. I did that a lot too. I don’t know something about using those little tubes of saline, I felt like a nurse I guess. Actually, I didn’t like for him to be dirty but, it was fun getting a 4X4 and opening that little vial thing that made me feel like I was doing something.

I kinda ticked a nurse off because I thought she was hurting him by moving him. I didn’t think it was necessary but, I told JT I said if she hurts you just kick her. I was really being funny but, I think she took me seriously. But, if anyone knows me they know I joke a lot. Especially if I am stressed. I told her goodbye and she didn’t even speak to me. I called up to check on him and everytime she was busy. I finally got the lady at the desk to get a report for me. I was ticked. You don’t ignore me when I am trying to find out about my child. Well, people heard about it the next day. Well, actually that evening. Yes, I ran my mouth. But, well, something had to be done about that one.

Well, I called up the next morning and found out that he came off of the vent pretty much after we left. He came off at 2:00 we left a little bit before 2. He was fighting it and they took it out. We seemed to follow a pattern after that. Every surgery he wanted that thing out when he came out of his sedation. Which who can blame him. He got a taste of what it was like without it and he wasn’t going to go on it again, unless he had to and even then I don’t think he would if he had a choice.

Well, after his surgery was just watching the incision and listening for bowel sounds and waiting. He actually had bowel sounds that night they were faint but, he had them. I remember Gena telling me that they were there she heard them.

Well, Wednesday came and me and Stacy were there bright and early for his bowel surgery. When we got there we were really excited because they said with this surgery it wouldn’t be long before he would be able to go home. They were talking like if he tolerated his feeds and started bottle feeds than he would be able to go home by Christmas.

I got to walk him down again which I always did and gave him his bath before hand. Vicky always made sure that I got to do that. I love her for that. She always made sure that his bath was saved for me.
Well, we went down. Stacy (my friend), was with me and we waited in the room and talked to the anesthesiologist. Ladi dodi do. I could explain all of that to him. If he would have asked. Dr. Goodwin came in and explained what was going to happen. Did the stitch it and let it drop scenario again.

And well, JT had this other little problem. I really don’t discuss it much with other people because well, it is a personal problem. But, well, since this is the story of his life I suppose that I can tell you. He had Hypospadius. Now , for those of you that don’t know what it is. Here is the explaination. I hope I can explain it in the right terms. His urethra was situated in the wrong place. Now his penis looked normal. But, the part where he urinated out of was at the base.

We asked Dr. Goodwin if he was going to fix that yet and if he could be circumsized. That man flat out told us, nope it’s too small. We are probably going to have to wait until he is older and bigger. Ok, lost it I was laughing uncontrollably. Seriously. That laugh took some of the stress out of me. After all they say laughter is the best medicine and it truly is. It releases a lot of tension.

Well, they took him back and it only took about an hour and 15 minutes.

Dr. Goodwin came out to talk to us and told us that everything went good. Everything flowed through the way it was supposed to and that he did it a few times just to make sure. Now, all we had to do was wait for bowel sounds and his first bowel movement and then we would know.

We waited in the hall for him to be wheeled back up. And they wheeled slowly passed us and let us know that he did great. I got to look and make sure for myself. They went up the back way and me and Stacy ran to the elevator so that we could watch them get him situated through the window. There is these little table and chairs for the kids and we sat at them and just watched but, acted like we weren’t. He went back on the warmer got him hooked up to the vent on it and took a bunch of vitals and then we were allowed to go in and see him.

Eye Surgery and a Funny Story

Well, tomorrow came and I was up at the hospital bright and early. I watched him go. He was back in now time and when he came back his eyes were really red and puffy which they told me is normal. He came off the vent at 5:30 that morning. I don’t remember why I couldn’t get up there that morning but, I didn’t get to see him until the evening. He was dressed and looking good and he was happy to see me. I just couldn’t stop looking at him. I loved being able to see his face. All of it. He still had the NG tube in. Which is the tube that goes through his nose into his stomache so that he could feed. He was getting approximately 17cc’s an hour up until his bowel surgery which was to be the next Wednesday.

Ok, a funny story. When they started him on feeds, they started him on pedialyte at 1cc an hour. This is called trophic feeds. Just to check out if he could tolerate something in his stomach I didn’t understand the process at the time. I figured that he would drink a bottle. I didn’t understand it would be hooked up like an IV and it would be sent down his NG. Until that time the NG was used to suck stuff out of his stomach not put it in. I was sitting there with Stacy and the whole time we are trying to figure out when they were going to come to feed him. I mean we were there for a few hours. And never did we see a bottle. Vicky was his nurse. She was on nights at the time. She spent the whole time we were there in the isolation unit working with another baby. We just couldn’t figure out why she didn’t come feed him. I think we finally stopped another nurse or the intern and asked them and they explained it all to us. We felt a little bit like dufusses when we finally knew how he was fed. I mean seriously, I was getting mad that my baby was being neglecting and not getting his feed. We laughed about that one.

Joyous Frustrated moment.

They had tired once in Cincinnati to take him off of the vent. He was on C-pap which is basically oxygen with some pressure. But, he didn’t tolerate it well. So, they put him back on the vent.

Well, he came back to Dayton and it was just mostly watching him grow. I spent Thanksgiving with him and we had a blast. I found out after thanksgiving that they were going to make plans to reconnect his bowel. He had a double barrel so, it was just a matter of reconnecting it. And from the surgeons mouth not mine just stitch and let go. They would run water through it and making sure nothing leaked. Then we would wait for bowel sounds and his first bowel movement. That is when we would really know if everything was fixed or not.


But, before that happened miracle of all miracles happened. At 7:15, November 27, 2006, JT pulled his vent out. He was breathing on his own. No nose cannulas. No oxygen. Just breathing like you and me. He decided that he wanted it no more. He was on the vent for 13 weeks, to the day except for the few hours on C-pap in Cincinnati. And it was another special day. It didn’t dawn on me until later that day that it was his original due date. I rushed up there to see him and seen my baby’s face. It was awesome. I was so afraid he wasn’t breathing right. I kept asking Patty the nurse if she was sure that he was ok. I mean I was totally exstatic that he was off but, when you get used to one thing and then something else happens. (which happens a lot in the NICU). It just scares you. I was holding him and he had a Brady which is where his heart rate goes down. Come to find out I had his head tucked to far in and had to relax and let his head fall back. That was scary. I remember I had Mikayla up there with me and we had the greatest time. We gave JT all kinds of kisses. She could touch him actually touch him with out me feeling like she would rip his vent out. She was just two at the time. Now, I was still worried about the IV’s because he had a lot of them. But, we had fun with the kisses and we read him a whole bunch of books and he just interacted with us and it was just awesome is the only word to describe it. I never thought I would see the day that think would come out and he would be breathing on his own.

I found out also that he would be having eye surgery the next day. He had ROP which is Retinopathy of Prematurity. This is where the retinas are separating from the back of the eye. It is seen mostly in preemies that have been on oxygen long term. He would have to be vented again. He would also have a paralytic again they didn’t want him to be able to move his eyes. This surgery was a laser surgery but, surgery none the less. He wouldn’t be off the vent but basically 24 hours when he would have to go back on again. I was scared that he would go on it and not come back off. We had freedom from one thing and I didn’t want to loose it. There were a lot of tears that day. Happy rejoicing tears, frustrated tears and scared tears. I went home and just prayed. Prayed that everything would turn out alright, and that he would come off the vent in no time.