A couple funny stories...

He was almost 4 months old at the time and he was a little more than 5lbs. He was growing by leaps and bounds. Even with no food. It was almost Christmas at this time. So, Stacy and I went in to do a little photo op and it was so much fun. We got him a preemie Santa Suit that was still oodles to big for him. I had sewn a blanket that had a beautiful picture and the words to Amazing Grace on one side and The Nativity scene on the other. We dressed him in a bunch of outfits that day it was so much fun just seeing him in clothes. We took a lot of pictures. When we left we went straight to Walmart and played with them and made 8x 10’s and regular sizes and calendars. The lady working at the photo center, I think was having as much fun as us. She started printing things that she thought would show better and we got a lot of pictures free. It was just so neat.

When I got home that night one of the nurses called me because me JT has some fuzz in his ostomy bag. You see the spot where he was leaking was leaking pretty badly so, they put an ostomy bag on it so that they could accurately measure what was coming out. It seems some how, some of the fuzz some how got in his mouth and well, she found it in his bag. We had a good laugh over that one. It was hilarious.

This is what happened the next night at the NICU. It is a hilarious story that I just copied out of my journal.

Well, last night at the hospital was a very humorous, fun night. Yes, there can be those up there. I walked in and was checking his diaper when I realized that he had spit up all over the place it was all over his head behind it on his forehead just whoa. Don't laugh but, for some reason I had it in my head that he couldn't do that, because he has the tube into his stomache draining his stomache of all fluids. Well, it must of gotten blocked and that is what happened ok, on to my little funny story here.
So, I freak out, and I ask where Vicky his nurse was, well, the other nurse across from him tried to call her and her phone was busy, so, she went to the front desk and paged her and told her get this. Mom Poling is requesting you and she only wants you. Noone else. Now, while all of this is happening Melissa had given me some warm water and I was giving him a shampoo and cleaning him up. Here comes Vicky rushing out. She is like what is so wrong that you have to take me away from food? Mind you you have to know Vicky she is a ball of energy and is very joking in a sarcastic sort of way. I told her, he spit up and I didn't think that he could. She is like Oh so, you pull me away from my food for spit up??? I said well, I had no idea he could. She said well, you have other kids didn't they ever puke on you? I said well of course but, well, he has the tube thing. She said yes, sometimes it get blocked. I said ok. Well, by this time there are four nurses over there and mister man is just screaming away and we are all laughing because seriously, I had no idea she was on lunch and I just wanted to make sure he was ok.
Well, I am laughing so hard I can hardly button his clothes up when all of a sudden, he does it again. Clean linen, clothes and all, so, he gets another bath. I am telling you he was the cleanest baby up there last night. Vicky finally took over though because of my laughing so hard I had wires crossed and coming out of places in weird different ways. he was so tangled up it was crazy. Well, we finally got him all settled and me and J.T. were talking and I was asking him if he loved momma and he would just smile and just kept giving me smiles. Now, I know it was gas it was followed by some really big ones. But, I tell you. It felt good just to see him smile and interact with me like he knew what I was talking about last night.
Now also, there is a running joke Don't talk to Mrs. Poling she will only talk to Vicky, she is the only one that she will talk to noone else help her. It was all in good fun and we laughed for hours about that one.

Another Crushing Day.

Well, the next day our world came crashing down again. JT was only on food for about 12 hours and they took it away again. His old incision the first one from his NEC surgery was leaking again. I just couldn’t believe it. Why oh Why did these things keep happening? I just felt like something was fighting against our happiness. We were only allowed to be happy for a few hours then something else would happen. And it wasn’t a little something it was always a big something. No one had any answers for me that night. No matter how many I asked. It was those dreaded watch and wait and we have no idea answers. The ones I detest. All I could do was pray that God would heal it and let it close and heal on it’s own, I didn’t want him to have another surgery. They were talking surgery because they had no idea why his bowel was leaking. Maybe a stitch slipped, maybe it perforated? They just didn’t know, and I didn’t want to hear that.

I had put the crib up a few nights before because well, they said as soon as he was eating good he could come home. I don’t believe in Old Wives Tales, but, when you are trying frantically to find a reason for something that has no reason, well, you come up with things. I made my husband take it down immediately, I told him when Johnathan came home, he was sleeping in the bed, that is twice I put the crib up and both times he took a turn for the worse. I didn’t want anything to do with that thing. It just needed to go away and away it went.

I remember holding him and rocking him that night because he was so fussy. I know it was because they took his food away. I finally rocked him and almost myself to sleep and he slept that way for about 2 hours. It was nice just being able to hold him. Those were the parts I enjoyed the most. The holding him and rocking. Because for a moment, I could block out all the sounds and just feel his warm weight in my arms and nothing around us mattered. I would tell him what everyone was doing, and what we would do as soon as he came home. The great ideas I had for pictures of him. Some he crinkled his nose at other times he just looked at me like I was crazy.

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.

Just wondering if anyone is reading this

Drop me a line... lol. Let me know what you think.

I figured out how to capture images from a dvd. So check this out. I am really excited about it.

Just to let you know...

For anyone that is reading I am going to take a break for a while and edit some more. The part of the book I am on now is not editing right. I guess I am trying for perfection, and well that is one of my hang ups I want it to be perfect. So, look for more in a week or so.

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.