Recovery, Eye Surgery and a Big Boy Crib

JT had a few problems recovering from his bowel surgery. He was in a lot of pain. He would hold his breath and have lots of Brady’s. So, they put him on nose cannulas with 1liter of oxygen just to help him out a little. He still was at this time not getting any food. They were still waiting for a bowel movement. I got sick around this time and couldn’t get up to see him. Anytime that I thought that I was sick, I didn’t go up there. He didn’t need to be sick too. That would really hurt him. So, I stayed away for a couple of days. I think that he just needed to be held and told to straighten up and get better. We always had these little pep talks. I would tell him “Listen dude, you have to get better. The only way mommy can pick you up is if you are better.” This usually did the trick. He loved to be held and talked to. What baby doesn’t really? He just needed his mommy.

I remember going up there after I was sure that I wasn’t sick. I hadn’t been able to hold him for about 7 days. He was just in to much pain. Lisa was getting him dressed and then just plopped him in my arms. I was so scared that I would hurt him. I didn’t move. Tried not to breathe. And don’t you know he smiled at me. I relaxed a bit after that. I was so happy to be able to pick him up again that I just was smiling like a Cheshire cat. He still hadn’t had a bowel movement and he would just gnaw at my hands. His binkie wasn’t doing the trick. He knew what a full stomach felt like. And he wanted one. He had never had a bottle yet, everything he ate was through an NG tube. But, babies even if they haven’t been fed by a bottle still have that reflex.

Well, Wednesday came and he had another eye surgery. Poor kid just couldn’t take a break. But, as I found out with Johnathan. He always took the road less traveled. He didn’t do anything that was expected. He kept everyone on their toes. I remember thinking how terrible this was but, thinking about it he was probably happy for the paralytic and the anesthesia because he was in so much pain. He made it through the eye surgery with no complications. He slept most of the rest of the day and came off the vent with no problems at all. Which was good. I was kind of afraid that he wouldn’t because of the pain that he was in. But, he did.

The next day he had a bowel movement. I remember feeling so happy that hey this is one step closer to coming home. Alright. Yes, yes, yes! They started his feeds two days later. They started slow and at first he was tolerating them. He was calmer and I attribute that to the fact that his stomach wasn’t empty. He was just so content. He didn’t act like he was in pain or anything.

I walked in that night and also found out he was in a big boy crib. He was out of the warmer and had a crib. This was a big accomplishment. I almost walked past him because well, no one had told me about it. And he was dressed and he just looked so good and happy.

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.

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.