Feedings a Christmas Present...

Vicky was one of my life savers in the NICU. She took care of me and kept me sane. She found out information for me and I knew if I had a question she would find out the answer even if to let me know that there was no answer. She also saved things for me to do. And if I was there she let me do everything. She’d say, “Just tell me what you need, otherwise you know where it is.” She made sure that I gave him his baths and that I knew everything that was going on. She also gave him kisses even though she wasn’t suppose to. But, we won’t tell anyone. She is also the only one I let call Johnathan, John. No one else could do that and get away with it.

Back to my little man. They got to the point where they thought they could maybe start to feed him again. First they had to let him digest his stomach secretions, and make sure that it went through ok. They did have him on a gravity suction. Which is the NG tube that went to his stomach was just set to pull his stomach secretions up on it’s own no suction. Around this time he also started getting a cold. They got out the suction and started sucking out his nose and let me tell ya, I never thought that much stuff could ever come out of a nose that little. You could just hear it. It sounded terrible. I didn’t look though I left that up to Stacy. There are a few things in life that I can’t handle and body fluids especially snot of any kind is one of them.

The next day they decided to do an upper GI. This is where they put solution in his NG and watch his digestion every hour by taking x-rays. Maybe they could find out where he was leaking and why. It took a couple of days for the test to come back. When it came back it was normal everything was working fine that they could see.

So, on Christmas Day, he got his feeds back. They were only trophic feeds and they were pedialyte but, it was something. Trophic feeds is just 1cc an hour continuous to make sure that he can digest and everything works ok. But, it settled my mind as a mother knowing that he had something in his stomach.

We spent the day with Johnathan and all the kids that went with me got pictures holding him. I still haven't developed those pictures yet. I think that I am still trying to hold on to something that isn't finished yet concerning JT. He got a lot of presents from his sisters and a bunch of pictures they colored for him. They had a blast up there.

The next couple of days they got his feedings up to 3cc’s an hour. But, then he started leaking stool out of his old incision again. It seemed the moment I got excited I totally got knocked back down again. They had also started bolus feedings which is they would put the whole 3cc’s in and see if he could digest it comfortably. I personally think they started to soon, but, hey Johnathan was unique in the fact he never did anything they said he would do. It was very frustrating. So, since he was leaking, you guessed it, they took his feedings away. They were only supposed to wait a couple of days and try again. But, he got a really bad cold.

Just an update ....

It is really hard for me to edit this next part of my book and get it out for public eyes to see. I am trying to please bear with me. This has been a very emotional journey for me and one that I need to do. Writing this is very therapuetic for me. And I am going through the emotions that I went through as our journey was enfolding. I feel the happiness, the sadness, the frustration and the sickness in my stomach. Right now in the story to give you a little overview is when we find out that he needed a small bowel and liver transplant. This was a hard time for me on the inside. I really didn't let it show on the outside. At least to me I didn't. Other people will probably say differently but, I was trying to hide how I felt. So, give me a few days and you will get more of the story.

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.