Mommy got sick and JT met someone new.

I think I also caught some of JT’s pneumonia, I remember not feeling really well and not being able to go up there for a few days. I was always really cautious about germs and such. And with him just having pneumonia, I didn’t want to test the fates. I felt so bad when I couldn’t go see him. I really just wish that he had grandparents that were able to go see him. That would help with this load but, he didn’t and the rest of the family didn’t seem too interested either. But, that is another story for another part of this book.

Stacy my friend well, we pretended we were sister and she was his aunt. Ok, everyone knew she wasn’t and Vicky just laughed at us. But, Stacy was approved to go up there and hold him and spend time with him so that he didn’t feel neglected. And let me tell you something, the neglected part was all in my head. He always had someone talking to him loving on him, holding him. The NICU has wonderful volunteers that go in to hold the babies. They know the parents can’t be there all the time. And JT had all the same nurses and they loved him to pieces so, he was not being neglected in no way shape or form.
JT got to meet someone new also, Stacy’s husband Shaun. I betcha he was scared to death. Most men they just are. Sorry, I like to mess with him it is fun.

We found out a few days later that Dr. Goodwin would be attempting another surgery. Something wasn’t right and they needed to find out what. All the tests that they ran seemed normal.

When I had gotten up there that night it was the first time I had seen JT in about 5 days. The first thing he did was spit up all over me. Ok, I deserve that one. I got him cleaned up and then we were sitting and talking and I was tickling his chin and he smiled at me. A real honest to goodness smile. It made up for not being able to be there like he was telling me, Mommy it’s ok, I understand. And I still love you.

JT’s surgery was to be the next Thursday at 9:00 in the morning. I was scared, I was slightly relieved they were taking steps to find out what was wrong but, still scared. Bowel surgery is one of the hardest to recover from. And this would be his third one.

Pnemonia and another funny.

His cold turned into pneumonia and his right lung collapsed. So, they put him on C-pap which is just high flow oxygen. It helped to keep his lung inflated. And they also positioned him so that his lungs would be able to open up more so that they wouldn’t be constricted. He gave us scare after scare. His pulse ox would drop to about 37 then go back up again and the cough was horrible. He would no sooner get to sleep when he would have another attack and get woke back up again. This is one of the few times that I seen him crabby. As in he cried all the time. And there was nothing that I could do to help him. I couldn’t really hold him that much because he needed to be laying so he could breath better. We had many many talks about fighting this thing. He would just look at me as if to say I got this just give me a few days. They suctioned him a lot and oh man the stuff that came out of him. They deep suctioned him and got all of the secrections out and he was better for a little while till they built back up again. Let me say that Johnathan also had chronic lung disease because he was on the ventilator for so long. So, when he got hit with a cold he got hit bad that is why it turned into pneumonia. I remember being very upset because well, he was in a hospital and you aren’t supposed to catch anything in the hospital. You were in there to get better not get sick. But, you know, the hospital is where all the germs are and with his lying and not moving too much didn’t help either. We just prayed and knew God would see him through it.

God and prayers from many prayer warriors helped him heal and get through pneumonia. The cough lingered for a while longer, but, soon that was gone also.

During this time they were talking about surgery again for his bowels. He wasn’t digesting, his fistula was still leaking and they couldn’t figure out what was going on. They figured a better way to find out what was going on was to go straight to the source and have a look at it. I really didn’t want him to have surgery again, but, I was all for figuring out what was going on, and it did seem that that was the best solution, because if they go in and look maybe they can fix it while they are in there.

I remember one of my grossest memories. But, really funny. His fistula was covered by an ostomy bag. Well, I was holding JT and we were just a talking away when I felt like my shirt was soaked. I figured he peed on me. Oh no! His ostomy bag had came off. Let me tell ya, that stuff doesn’t smell too great. I thought I had broke something on him I was so scared. But, nope, he pooped on me. He finally pooped on me. Ok, it was out of the ostomy bag but, hey I got that memory too. We were all about making memories and that was one.

The ride home, now, that wasn’t so funny, but, me and Stacey laughed so hard with the windows down every now and then until we got home.

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.