Grief Series

I am doing a series so to speak on grief at my other blog

http://siscaboo.wordpress.com/


I have never shared the day that JT passed away so, I am doing it over there. If you would like to read the whole story about JT you can go here: http://www.caringbridge.org/visit/johnathanpoling

I am just having a hard time putting the rest of his story up, because well, it is hard, that is a bad excuse but, it is the truth.

Thanks,

Bobbie

Recovery Part 2

His incision was again leaking stool and his kidneys were trying to shut down. He was having one blood transfusion a day sometimes twice.

The surgeon interns where checking on him and realized that there looked as though there was fluid under his incision. They ended up opening it up and it drained a lot of dark blood. Dr. L. Who was a resident in the NICU told me all about it. They put in a penrose drain which basically looks like a little paper tube and it just drains to gravity. JT also had pressure dressings and a wet to dry dressing on his incision because now the incision was open and they wanted him to heal from the inside out.

Ok, I am not going to lie. It was gross. Stacy looked at it. I didn’t. They would have had to of scraped me up off of the ground. But, I did when I could, hold his hand with my eyes closed.
After the blood was drained, he was so much more comfortable. JT was still on the vent but, getting much more better. He was still having problems with his kidneys and not hardly urinating. So, they inserted a catheter to collect it and were testing it.
He had one bad night were his blood pressure kept dropping so, they gave him some dopamine to regulate it, this would also help with his pee issues. His kidneys were trying to shut down but, with the dopamine, it helped regulate his blood pressure and urine output.

Here is an excerpt from my CaringBridge Journal at that time.

Ok, here is what is going on. They decided not to do surgery. They are going to watch and wait.
He had a rough night. His blood pressure dropped and he is on dopamine to bring it up. He isn't giving any urine output and that is unusual because of the lasix they gave him. He should be peeing like a champ right now and he isn't. His potassium is high and sodium is low. So, they gave him some kind of enema that will help with that. Plus, they gave him a saline bolus to see if that will make him pee. They also inserted a catheder (my goodness how do you spell that?)
The surgeon is up there right now looking at him and the dr and the intern and the kidney doctor and they are all working on a plan let's pray they fine one that works.
He is not in any pain. They upped that too.
I can't think right now of what else they did. He is just really sick right now.
Vicky was his nurse last night and she said she loved on him and gave him a pep talk and talked him through everything she had to do to him and that it was to help him not hurt him. I really love that lady. She is awesome. Well, that is all for now.
All?? Really that is alot.


TUESDAY, JANUARY 23, 2007 08:36 PM, CST
Johnathan's incision opened up and the surgeon took out all of the stitches and now they have wet to dry dressing on it. They are going to put a wound vac on tomorrow.
But, he is peeing buckets and his blood pressure is stablizing.

WEDNESDAY, JANUARY 24, 2007 07:03 AM, CST
Johnathan had a relatively quiet night. They turned his oxygen down to 21% that is room air. They had to give him 2 extra doses of fentanyl and a dose of versil. He was in alot of pain. He is right now zonked out and not caring at the moment which is good. That is the way I want him. I don't want him to be in pain and panicky like. The wound vac goes on today and hopefully this will help him heal.

More on the Wound Vac later.

I think I am getting to the point where I can post some more of this up. I just sometimes get to where I am reliving it and it is a hard process. I prayed about it and I felt the Lord was telling me to take a break from it and I did. So, hopefully I am back at it.

Recovery part 1

When I got in to see him it was a relief. He was really sedated. The ventilator was doing all the work for him and I just whispered I loved him and that everything would be fine and he did great!!! I held his hand for a little while and just sat with him. I was really afraid to touch him because I didn’t want to hurt him. This surgery scared me that much. I was told he will probably be on the ventilator for a few days this time and they had a fentynal drip going for pain and it was at a high dosage because they wanted to keep him sedated. They didn’t want him to move at all.

The evening Stacy and I went up there to see him it was really scary because he was puffed up to twice his normal size which meant that he was retaining a lot of water. I mean to the point when they repositioned him you could see it move. And his eyes were bruised looking. He was in a lot of pain when they touched him to do his care, I seen him raise up off of the bed. He was trying to cry and pull out his vent. They gave him an extra shot of his fentanyl and it took a good 20 minutes for him to finally calm down.

I just wanted my baby back. The one that would just look at me like I was crazy. That I could cuddle and hold and make crazy conversation with. I am sure I mentioned this, but, people probably thought we were crazy. We talked and talked and talked to JT. I mean we held conversations with him about everything under the sun. I remember this one couple beside us. They always had a lot of family visit. I mean a lot like a family reunion up there. Which is great that means that they had wonderful family support. But, the baby would just sit in the crib and they would sit there and talk and hardly ever acknowledge the baby. We never stopped talking to JT. He was our world, our attention was all him. Unless he was asleep but, then that really didn’t stop us, we would wake him up. And 9 times out of 10 he wouldn’t care. I had to tell him about our day and what every one had been doing. Even when we were talking to doctor’s and such, we always included him. Talk and touch that was our motto. That was basically all that I had.

Back to JT. We took some pics while we were up there because even in the sedated state he was still hilarious. He was sleeping with his hand up to his face one finger on his lip as if to say….”wonder what they are gonna do this time?”

The surgery

Johnathan ended up going back to surgery at 11:00. I remember waiting and calling everyone because it was taking a long time. All of his other surgeries were quick. Well, relatively, an hour and a half tops this one took 4 ½ hours. I kept having the lady at the desk call back to make sure everything was ok and then the surgeons kept calling out to let me know that everything was ok. It was terrible. I had no one waiting with me and I just felt so alone. I wasn’t expecting that because well, I have really never had anyone go with me to my children’s doctor appointments before. My next to youngest had surgery and I did that on my own also. But, I felt alone. Believe me there were a lot of people in there they all had family with them and I just looked at them and just started feeling sorry for myself. Yes, I know make it all about me I know, but, sometimes yes, I am selfish like that. When the hours drug on, all I could think about was what if he dies in there and there is no one here with me? I don’t think I can handle that. I prayed for a while, you know when you hand it over to God, it really does lift a burden off of your shoulders. I just kept praying, asking him to watch over him and help him and give him the strength and the doctors the wisdom and skillful hands. I called Stacy next and we talked for a while. She comforted me a lot during this time. She kept a calm and cool head. Don’t know how she did it but, she did.

Finally, at 3:25 that wonderful pager started buzzing and I freaked out. I was afraid of what they were going to tell me. I had to pray to make my feet move. Otherwise I think I would have just sat there for the next 5 years. I handed the pager to the secretary and she said that he just came out and he is doing good. She told me they would be bringing him out in a little bit and if I would sit over there I could see him come out. Dr. Goodwin would be a few minutes and then he would come out to talk to me.

You don’t know the inexplicable joy and relief that went over me when I seen him in his incubator wheeled down that hall with all the beeping and the flashing lights.

The report from the Doctor was well, let’s just say weird, and unsettling. He said when he opened JT up he seen things he had never seen before. And this man has been a surgeon for over 30 years. They also found evidence that he suffered from NEC again and a lot of adhesions. Adhesions are scar material that is very painful. So, he cut him in 3 places and reconnected. And he did a tuck and flip and put fluid through 3 times to make sure that everything flowed and there were no leaks. (sometimes I tell you when he talked to me I felt like I was talking to an auto mechanic.)

So, it was after that, I made a mad dash to the elevator to go watch them get JT all settled and so that I could go see him for my own eyes. I just sat there on the little toddler table just watching a praying. I got a few waves here and there and smiles and a couple of thumbs up. Even if you know that there are going to be at least 10 people around your baby working on him to get him settled it is still a scary sight. I was mixed with apprehension, nervousness, and joy that he made it through but, still scared for the days that lay ahead. Recovery for JT was never nice on him. He got complication after complication and this time would be no different.

Just a note

JT's one year anniversary just passed on May 17th. We let balloons go at 5:15 the time that he left this world to go dance on clouds and play with the angels and most importantly to meet Jesus.

We also let a balloon go for a friend whose daughter is in Heaven with JT. I just know they enjoyed it and were having a grand time watching us.

I know I haven't blogged anymore of the story and for that I am really sorry. I meant to put a part of the story up everyday and by the time the one year anniversary was upon us, his story would be written down. But, well, emotions and life have gotten in the way. I am sort of a perfectionist when it comes to my writing and especially about this. I want it to be perfect. I want it to tell the story of my son in a way that he would be proud of. That probably makes absolutely no sense but, sometimes I don't, lol.

I also would like to show that we would have never made it as far as we did without our faith. God was walking with us. We also had some great prayer warriors on our side and their prayers helped JT pull through everything. Even his death. He left us with a smile on his face and he left us calmly. He was at peace and in my heart of hearts I was too because it was what I had prayed for. If he had to go I wanted it with dignity, love, and peace. Surrounded by family and friends. That was all answered for us. I remember holding him and just telling how much I loved him and it was ok to not fight. I am going to include my letter to him that I wrote on my other blog. Then starting next week I am going to be writing the rest of the story. As Paul Harvey would say.



Dear Johnathan,
You left us for a better place a year ago today. I remember holding you and telling you I love you so much and that it was ok you could go. I wouldn’t be mad at you. I was excited for you. You would get to meet Jesus today. I told you don’t hang on don’t fight for us anymore. There is no reason to. You are tired you fought a great fight and I am proud of you.
You enriched my life far more than you will know. Because of you I met people and became friends with someone who loved you as much as I did. Who fought with you as much as I did and to this day we still love and miss you.
I miss so much about you. I sometimes wish I could just have one more moment with you. Where I could tickle your fat rolls and just stare at your face and shower you with kisses. I miss sitting with you and just laying my head on the bed and watching you sleep or the times when you would just play with my fingers. You were so amazed with fingers. After you came out of your heart catherization and I came back to see you that night. I came up to you fighting your vent and you pulled it out you wanted that no more. I can’t blame you. But, as soon as Jenny gave you her fingers you were just content as can be. She only had you that night and you played with her fingers for hours. And she enjoyed every minute of it. We just sat there all night and watched you and played with you and talked and we were just amazed as you were about your amazement with fingers.
You was a great son. You were all I ever would have wanted in a son and I got it. I was always amazed at your ability to be so calm and so content even when your body was failing you and you were going through so much. I know that was Jesus, he was walking beside you. He was holding your hand and comforting you and keeping you calm. He was tickling your fat rolls from Heaven to keep you content and happy I just know it.
You built up my faith and let me see a loving God who gently walks us through the forest who is there to lift us up when we have no strength left to do it ourselves. And believe me this last year there have been many days where I couldn’t with out his help.
When we found out that you wouldn’t make it home with us, I used to think how am I going to live with out you? I don’t think I can. God might as well take me with you because I won’t be able to live with my bubbas. My heart is still broken but, I am managing to put some of the pieces back together. I am beginning to see the blessing in my life that was all made possible because you came into my life and showed me that blessing can come in the smallest packages. It isn’t always the big things. It is the little things. Like being able to get out of bed in the morning with a smile on my face because I know in a few minutes Mikayla will be running to me telling me I awake Mommy, I love you. She has a wonderful way of making me feel so loved.
We were watching your video and she said hey that’s my Donthan. I said no, that is my Johnathan. She took my face in her hands and said NO Mommy that is Desus’s Donathan. I said you know what sweety? You my dear are right!
You my son, are in Heaven with Jesus. God gave you to me for a short while and back to Heaven you went. But, you will always be on my mind and in my heart. You are my son, you always will be but, you are Jesus’ too. I am so thankful you are being so well taken care of. I Know you are gloriously happy. Worshipping the Lord, dancing on clouds playing amongst the angels and eating chocolate pudding. Free of all the wires and procedures that you were encumbered with in this world. Oh how awesome it must be to be whole and healed like never before. I am thankful and excited for you.
So, until we meet again, my sweetness, I will be down here living, living a life that you have taught me that I need to live. No more hiding or running away from life. I will live it to the fullest because that is what you did while you were here. And I can’t see doing it any different than you did.
I love you!!!!!
Johnathan Thomas Michael Poling !!!!!!!!

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.

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.

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.

Cincinnati Children's The heart surgery

JT was in Cincinnati for 3 weeks. I thought this was just going to be about a week stay and then he came back. NOPE!! Sure wasn’t. I got to see him 3 times while he was down there. Stacy went with me and took pictures and gave them to me as a gift. We had a great time visiting with him. I didn’t like Cincinnati at all. They were so different. They were sterile. At Dayton and Miami Valley, it was homey and nice. All the nurses were nice and the lighting was low and they kept it really nice for the babies and parents.

Cincinnati was brash and clash. Lights were blaring, they covered the baby’s faces with blankets, it was terrible. My first visit there, the nurse said I was agitating him. And was going to give him some adavant. It scared me because well, I know he wasn’t agitated he was just moving. He was interacting with me and glad to see me. He was trying to reach for my hand and well we all know baby’s coordination skills are not very good and he was still not supposed to be born yet. I told her no under no circumstances do you give my baby that. She had a fit and told me that I didn’t have a say so in it and that he was agitated. Mind you during all of this, his stats were wonderful. No heartbeat going down, oxygen great blood pressure great. He was moving that was the problem. I also threw a fit about the blanket over his face. It was like to me that they didn’t want to see their faces to remind them that a little person was in there and not just something in a bed that needed monitoring. I just didn’t feel the caring and loving that I felt at Dayton. I was not told anything was not let in on medicines and procedures. It was horrible for me. But, that is my opinion and others might have found it to be just wonderful. I didn’t.

Johnathan had his heart surgery and I must admit his heart surgeon was the best and he talked to me like I was a person and treated JT like he was a person.

What he had done was a PDA ligation which was to close the vessel that didn’t close after birth and did a banding. The banded a vessel to keep blood flow to a minimum to help with the circulation. He did great during surgery. When we finally got to see him He looked very bloated. This was a norm for him after surgery. He had one little tear coming out of his eye. He was coming out of it and was having a lot of pain. The Cardiac Intensive Care Unit (CICU), was a lot better then the NICU. The listened to me and he was given some pain meds. I stayed as long as I could. Mike had to go to work the next day, so we had to leave soon after. It broke my heart. I wanted to stay so bad. To let him know that everything was going to be ok. I prayed, and prayed, and called and called.

He got through the night and the next two days great. He was coming home. When I say home I mean Dayton NICU. I was never so happy, and I was there to greet him. He looked wonderful and his incision was pretty much healed up. It amazed me and he grew in those two days like you wouldn’t believe and he was out of the incubator. He was in a warmer. Big milestone. I thought that I would just be able to see my baby through a window. But, no he was on a warmer and I could kiss and love all over him and just hold his hand and not have to speak to him through a door. It was awesome.

How to fix a heart

In the beginning of October the cardiologist came to me and told me that they had ran enough tests and have figured out the anatomy of his heart and what they were going to do to fix it. It seemed that all of his arteries and his aorta where going to the other left instead of the right and that they were forming an aortic arch around his windpipe. This is what was making it hard for him to come off of the vent. So, she told me the plan. They would be transferring him to Cincinnati Children’s. He would be in the NICU there and they were going to do the PDA ligation and put in a PDA banding to constrict blood flow to his heart so that he could come off the ventilator and he could grow and then when he was about 1 year old then he would have the surgery to close the heart. I was happy they had finally figured something out but, scared to death of him being transferred to Cincinnati. I knew nothing about this place and it was so far away. I knew I wouldn’t be able to make it down there much. And that also meant that he would be alone in a place where no one knew him. He knew people up here. He had mostly the same nurses and the doctors where the same. Heck the cleaning lady was the same everyday. I just didn’t know what to expect and when you don’t know what to expect you get really anxious. I really didn’t want to let him go but, the day came with that wonderful announcement that he would be leaving in the next week. Ack! Not what I wanted to hear.


JT was scheduled to leave that Monday. I prayed and I prayed. Lord, please let them treat him right, don’t let him forget me. Don’t let him think I am just a nurse passing through. Let him know I am his mother and remember. Just watch him please while I can’t be there.

My best friend and how she came to be..

JT made it through that surgery and recovery just fine. Every day was an accomplishment. For the next month we just watched him grow and talked with him. Not much changed in his care. I learned all about how they have to suction him and keep his vent clear. I changed as many diapers as I could, took temps. I got to hold him weekly when they changed his giraffe incubator. It was only for a few minutes but, it was great. He was gaining ounces everyday and getting bigger.


Around this time, I had taken Stacy up there. This is big Stacy who has become my best friend. I met her through a program that we both participated in with School. But, up until this time we were just acquaintances. We spoke at the outings and get togethers but, that was all. I seen her at a school outing at Chuck E Cheese. It was a fundraiser for the school and I was taking the girls. I took the pictures that I had of Johnathan so that I could show everyone. I sat down with her and showed her the pictures. She tells me later that she was afraid to ask if how he was because no one had told her if he survived or not. But, I guess I alleviated that fear when I started talking about him. We went out to breakfast one morning and I was just like do you want to go see JT. She said sure. Just like that. I remember taking her up there and I was totally scared. I was at a crossroads of sorts. I wanted people to meet him but, yet, I was afraid, because for one he was really small. Barely 2lbs and all the stuff hooked up to him. You could barely see him. I guess what I was trying to do what I always do protect everyone. But, I didn’t have to worry about that. She met him and totally fell in love with him. After that she went up with me to visit on a regular basis. And that began our friendship. She became my support system. She helped me make decisions she talked to doctors with me. She honestly was my lifesaver.

My other children

I had four other children at home that I had to take care of. They had to go to school and I had to get them there. I really didn’t have a support system that I could be with him twenty four hours a day. I was bitter about that for a long time and I think that still to this day that makes me mad. It feels like he was ripped off in the mother department because I couldn’t spend every second of his life at least within a few floors of him. I had to go home and take care of kids. Sometimes I resented the children too. I know it wasn’t their fault. I knew that but, I just was mad that because of them. Because I had to take care of them, JT got robbed of me. But, while I was there, I gave him the best of me. I always made sure that he was surrounded by happiness. If I thought that a nurse wasn’t treating him right you had better make sure they heard about it. I didn’t care if they were having a bad day. It wasn’t his fault. He needed to be surrounded by love and laughter and that is what he got. But, sorry, I guess I got off on a tangent. I have 4 girls. JT was my first and only boy. Well, that I gave birth to that is. They were Ashley12, Harley 10, Stacey 9, and Mikayla 1 ½ I also have a step son named Timmy that was 12 at the time he was born. They loved the fact that they were going to have a baby brother. They were so excited. And they weren’t upset that he was in the hospital. They were just upset that they couldn’t play with him like they wanted to. During this whole journey I always told them the truth. I never mislead them about anything. I didn’t keep the bad times from them, and we always celebrated the successes. I made a pact with myself that I would always be truthful with them. And believe me there were times I wanted to lie but, I knew that would hurt them in the end. Let’s face it children are not stupid. They can pick up things in no time flat. If I would have lied to them, they would have known and then they wouldn’t have trusted me to be truthful with them.

Back to mister JT. I called that night and into the next morning oh I would say about 25 times. I kept getting the he is resting comfortably. That is not what I wanted to know. I wanted to know the low down dirty facts. Did he have wet diapers. How was his breathing? Did he have any Brady’s. Not resting comfortable. That doesn’t satisfy me. And a lot of them up there learned that I needed more than that. You see JT’s care became an obsession with me. I wanted to make sure he never got diaper rash, he never got bed sores, that his head never got flat on one side from laying on it too long. I felt these are the things I have control over. I can let them know I think he needs turned, I think he needs repositioned. I didn’t have any control over anything else so you had better believe what I had a say over, I was going to say. Now, whether they listened to me was another thing all together but, we all came to respect and love each other.

JT's NEC surgery

The whole time over in the car, I am freakin out. I do that all the time. Freak out before I get there so that when I get up there I am all freaked out so to speak and have vented everything so that when I get up there I can keep my head and try to listen to and understand what is going on. When we got there we went straight to the NICU. I think I sat and looked in that window watching even though the partitions were up for the whole 2 hours and 5 minutes it took to get him stable. Finally when we were able to go in we had to do that wonderful lovely scrub they make you do. It seemed to take forever. I never knew hand washing was such a task.

The nurse was talking to me the whole time I didn’t hear a word she was saying. Mostly just he is very sick and the surgeon is waiting to talk to us. The only thing I cared about was waiting to make sure he was still breathing. OH boy, he was and they were already prepping him for surgery right there. They gave me a minute to say hi and talk to him. Here began our journey in Dayton Children’s NICU.

I met with the surgeon. He really concerned me because he was southern and seemed to talk and move so slow. I was afraid that he wouldn’t be able to get stuff done fast enough. But, he explained everything. Very well I might add. They were going to make an incision right beside his belly button. They were going in to get all of the necrotic (dead) bowel. He wasn’t sure how much there was in there but, he had a feeling it was going to be a lot and he wasn’t sure if he could save any. He told us that IF he came out of the surgery than he would have a double barrel ostomy. This is where you pull both sides of the bowel out of the body so that the feces can drain into a bag, known as an ostomy bag. Then he said, let’s move now, I don’t want him in pain anymore and the sooner that we get him down there and started the sooner he will be comfortable. I got to walk him down to surgery. Let me tell you that is the scariest walk of all. Every surgery is scary, and is a long walk. It felt like going to the electric chair. You know it is going to happen. You know you have no choice and well, you just have to do it. But, it takes forever. We finally get down there and I talk to the Anesthisologist. He explains to me what they will be using is a paralytic. He will be paralyzed so that he can’t move. Everything will be monitored and the ventilator will be breathing for him. During his last surgery we found out also that it takes a little bit more for Johnathan to be anesthisized than normal because of the morphine that he is on. So, I passed along that information. He said thanks a mom that is informed. I love that. And then in he went. Not before the surgeon came out and told me to go get something to eat this could take a few hours. He said go somewhere off campus get a burger and relax. Ok, right you are going to cut my baby open don’t know if he is going to live or die? And you want me to what???? Relax??? Ok, whatever, but, I was hungry and after just having a c-section, I knew that I needed my protein to keep my energy up. JT’s surgery started at 7:35. We went got something to eat and got back to the hospital in time to get a page saying that he was out of surgery.
We met the surgeon in the waiting room. He said that he had to take a considerable amount out but, he still had a lot left and for right now we have to watch him and monitor him. Otherwise he made it through the surgery great.
Thus, began a ritual. Johnathan had 9 surgeries, after everyone of them, I waited in the hall to watch him leave to go up to the 4th floor. They do surgeries on the 2nd. I would not feel any sort of relief that he came out of it until I seen him being wheeled out and heading up to his space. Michelle who had brought him over who was the respiratory therapist brought him out and slowed down as she passed us so that we could get a look. He looked swollen but, other than that his stats and everything looked really good. We didn’t get in to see him until about 10:00 that night. It seems it always takes a long time to get him stable after a surgery. All I could do was keep looking through the window watching as they worked on him. When I finally got in to see him I was so exhausted. I was just happy to see him. He was still knocked out. They were going to keep him on a morphine drip to keep him out of pain. Even though he was out I talked to him and let him know that I was there. They left the lid to his Giraffe incubator up. The Giraffe is an awesome machine. It comes equipped with a scale so that the baby doesn’t have to be taken out to be weighed. The lid lifts up so that it becomes a warmer. It has a lot of other gadgets on it too. And it is all digital. I got to give him a few more kisses and then I had to leave. That is really hard too, leaving my son in the care of someone else. I didn’t know them, they didn’t know me but, they were going to be the ones taking care of him whether I liked it or not. I felt I knew what it felt like to have Children Services come and rip your child from you and say that you weren’t going to be responsible for them anymore. My heart was hurting more than I could ever explain. It was like someone was ripping it out of my chest. I told him good bye.

Video

Here a slideshow of JT with the song we used at his funeral.

The big move to Dayton Childrens

One of the best things that you can do for your child I believe and this is my opinion is to talk to them. Tell them about everything. What their siblings did that day, what you did. How you feel about them. Give them little pep talks. Let them know that you are there. Preemies get so agitated with touch because their nervous system is so under developed that the most that you can do is talk to them. And your love can shine through in your voice. Even reading them a story. Which we read many a book to him. Just so that they hear your voice. JT would calm down when we talked to him. He wasn’t one to get very agitated but, when he did, a nice calm authoritative voice soothed him. That and his binkie, (pacifier). He loved that thing. When JT was given his first feeding through his NG tube when he was 7 days old. ½ ounce breast milk and ½ an once of formula. The next day, his stomach started to distend and look a little purplish. He was starting to have very hard bowel movements also. They watched it for a few days. When he was 10 days old, I got a call from the hospital that they would have to move him so that they could do surgery, IF that is what I wanted. Otherwise, we could just let him stay as he was and just let nature take his course. I said, oh no!! We are going to do what we can to give him a chance. I told them under no circumstances was they to move my baby without me being there. This was the first of many emergency trips to the hospital. I was scared silly. I had no idea what was going to happen and they told me that he might not even make it the 4 minutes to Children’s. I was really scared, but, at peace with my decision. I knew that I had prayed and gave it to God and He knew what he was doing. I actually got there in record time. This was one of the few trips that my husband did take with me. I got there in time to sit with him for a while. It took 2 hours for the neonatal transport to get there. I was starting to get upset, because if this was such an emergency then why were they taking so long?
When they finally arrived. So much stuff started happening. They got report on what meds he was on his hyperal, all of his vitals, what settings where on his ventilator, and his history of surgeries and so forth. A lot of information, and most of which I didn’t understand. They had me take his temp and change his diaper. Oh man Oh man, was I scared. I knew they were having me do this because they thought that he wouldn’t make it to the hospital. Both of the transport team had another surprise in store for me. They kept telling me to come here. They needed my help with something that only I could do. I was scared to death because I had to climb through a lot of wires and tubes to get there. Next thing I know they are plopping him into my arms. I was in shock. They were bagging him so that they could get all of the ventilator lines switched over. That took probably about 1minute but, it felt like about 20. She kept telling me to just cover him with kisses, so that is what I did. I almost most drowned him with my tears. I never realized how heavy a baby that is bearly 2 pounds feels in your arms. I mean, he put a weight there. A weight that I couldn’t bear letting go of. A weight that I still ache for today. They finally got him all packed in the transport incubator. Let me explain this thing. It has everything on it that they will ever need. Monitors, ventilator, meds, you name it, it has it. Very awesome piece of machinery.

As we were going downstairs they told me not to be alarmed because they are going to have the sirens going. That is only so they can get there in a hurry. And under no circumstances are we to follow them. They said that would cause accidents. They gave us an alternative route to take. They also explained to us what was going to happen once he got up there. They let us know that it might take a long time to get him stable and set up before we got back there to see him. And then it would be a really quick visit and a quick talk with the surgeon. She gave me a packet with phone numbers in it and his number so that when I called I could get information. She also gave me a hug. I will never forget that. Both of them where so, I don’t know empathetic to the situation and they treated him so good and didn’t treat him like a number like he didn’t deserve to be treated with respect because he was broken.

The first days

We found out that JT needed surgery when he was 5 days old. He needed a PDA ligation. This is where they go in through the side of the chest and close the vessel that is connecting the pulomonary artery and the aorta. This was supposed to be an easy fairly quick surgery. 45 minutes at the most. I remember going in there and right before his surgery, I got to give him his first bath, and hold him as they switched him to the warmer. It was the best feeling in the world. I kissed him for the first time and just talked to him and let him know who I was. It was one of the hardest things that I had to do, watching my child go into surgery. Well, I waited and waited and waited. An hour and a half later, they finally came out and let me know that because they weren’t sure where his PDA was located they decided that they would wait and have someone more experienced do it and that would entail moving him to Cincinnati Children’s. Not the answer I was looking for, but, if it made him better, I was all for it. I sat in the OR room they have right there in the NICU with him and went with him as they moved him back to his incubator. I got to help and hold him again. They had to put a chest tube in him because they nicked his lung. They tell me that sometimes it happens with babies this small. It just had to heal and it heals quite fast. He only had the chest tube for about 3 days. Each accomplishment that had happened was something to be celebrated. We celebrated every day that he was alive and growing. After all he wasn’t supposed to make it 24 hours and he was at the time 5 days old. Johnathan was on a lot of medications from the day that he was born. He was on 4 different pressers for his blood pressure. He was on TPN/Hyper All. People have so many different names for it. It is IV nutrition. He got this instead of food because he was too young to suck. He had an NG tube down his nose to suck out any secretions in his stomach. He also was on a ventilator to help him breathe. Very scary to look at. JT’s (you’ll hear me refer to him as both JT and Johnathan throughout this whole piece), billirubin which is a level measured in your liver was high which meant that he had jaundice. The put those wonderful sunglasses on him and he looked like a little bug. They also put lights on him. We used to joke that he was getting his tan. The other thing they did was humidify his incubator. Which meant that it was very hard to see him through all of the humidity. It fogged up just like your mirror does after a shower. It was so frustrating that first week. I couldn’t see him. Couldn’t keep the hand ports open very long and I couldn’t touch him because of his skin being so fragile. And anyone knows that all you want to do is just pick your baby up and love on him or her with all that you have. I couldn’t do that I had to settle with just looking and talking and hoping that he could hear me above all of the machines.

And so the journey begins....

Grief, it is a terrible word. You never want to go through it. I never thought that I would have to deal with it. I thought I could live my life and never be touched by it. Yes, I knew my mom, grandparents, and so forth would pass away, but, when I started my family I never even thought of losing one of my children. A child is not supposed to die before their parents. They are supposed to bury their parents not the other way around. I never appreciated that before. I never really thought about it. I just couldn’t fathom that happening to me. Well, it did. And in this little book here you are going to learn about my child, and all that we went through in the NICU and then I am going to talk about grief also.
Having a child changes your life drastically. You are no longer a selfish being only out for yourself. Your whole being is protecting and loving that child with everything you have to see them reach adulthood to live out on their own. You have dreams for them which they will probably not accomplish as they are your dreams and goals and not theirs but, you don’t think of that. You just look at this miracle that you have created and think nothing of how some children struggle and fight to survive to take one breath at a time. I have had 5 children. The first 4 were girls. They were born with no complications. Sweet and beautiful like it should be. My 5th child was Johnathan, my sweet baby boy. He was born 15 weeks early, and from the moment he was born, he had to fight a fight I know if it was me that I wouldn’t have fought. He is still the strongest person that I have ever known. He never gave up. He was born with ASD (atrial septial defect), VSD (ventrical septial defect), premature lungs and everything else in between. He weighed in at a whopping 1 pound 15 ½ ounces. And was no bigger than a Barbie doll at 13 ¼ inches. He was born by emergency cesarean section because my placenta abrupted. I remember the first time I seen him through my narcotic induced eyes. I seen this very very tiny knee. I feel in love with that knee and I asked the Lord to please let him make it through the night so that I could see him. Johnathan didn’t have much of a chance. They gave him 24 hours. He made it. I went to see him as soon as I was able and it was very scary seeing all of these machines. And this little itty bitty baby amidst of it all. But, to me he looked just totally perfect. I seen a baby that was my son. I just couldn’t believe it. My son. I had never been able to say that before. I just kept repeating in my head. My son, My son. I have a son. From the day he was born, I gave it all to God. I knew that whatever the outcome God knew what he was doing and that it would be ok.

The beginning

March 2nd I found out I was pregnant. We were trying for one more baby. We were really excited. We thought maybe this time a boy.

My pregnancy was progressing along nicely so I thought… My 4th month u/s showed my placenta was forming over my cervix. I was put on “light” bed rest. I could do a few things like those drated dishes. But, no heavy lifting or lots of standing. Well, I did what I was told.

I was having u/s’s weekly. I found out that I had complete placenta previa. So, I went on strict bed rest. This meant only up to go to the bathroom. Yeah, right, I have four kids, one of them a toddler. I rested as much as I could.

School started August 23rd, I started bleeding the early morning of August 24th. I went straight to the hospital. They kept me for a few hours, and then sent me home. I went home and took a nap. I woke up bleeding again. Back I went to the hospital. This time, they kept me.

I was to find out in the morning what they had in store for me. They decided to send me to another hospital. One that was better equipped to handle my “situation.” I was so scared, I handle everything with humor, the more scared I get, the more jokes I start spewing from my mouth. The doctor that was on call of the 3 that I saw had no sense of humor. Absolutely none. I don’t think he even knew how to smile much less laugh.
So, I am joking and cracking jokes and he is trying to explain how serious my condition is. I think I mouthed something like, oh yeah, trying to get rid of me are you? That isn’t a very nice thing to do. Think of all the money you’ll be out. The whole time I am trying to figure out what to do with my kids. I was Booster President at their school, oh my God, help me. How are they going to get to school? When will I see them? I am going so far away. Oh God, please help me. These thoughts were going through my head so fast I was literally getting dizzy. But, I gave myself a mental smack and got myself together enough to hear something about Care-flight. I started to come undone again, but, I stopped myself. I told Dr. Dude that under no circumstances were they putting me in a helicopter. That would cause me to have a heart attack and that would NOT be good for anyone. So, they decided that an ambulance was a better decision
Waiting on that ambulance was pure hell. I was trying to love on my almost 2 year old Mikayla with everything I had. She had never been w/o me, and I had no clue how long I was going to be in the hospital. They were talking months. I still had almost 4 months to go. They finally got there and I wished that they would’ve taken longer. Like maybe 4 months longer. That wasn’t going to happen. They transferred me over to the stretcher, and I am not going to lie, I am a big girl and well, skinny people trying to lift me scare me. They got me over there with no accidents or spillage and I was still holding on to Mikayla with all that I had. I didn’t want to let go. My other children were in school and were going to get a rude awakening when they got home and found out that mommy was not going to be there. I finally let Mikayla go and while choking back tears because I didn’t want her to see me crying because I wanted her to know that everything was going to be alright I started my journey. I had to go to a hospital 40 minutes away. The ride took forever. The whole time they are checking all of my vitals and the babies and I am looking out of the back window amazed at how everything looks weird and different when you are looking backwards. And I also kept telling the ambulance driver which way to go and how to drive. I think either I was comic relief or, they were ecstatic when they finally unloaded me. I’ll never know but, they got me there safely and in one piece and for that I am eternally grateful.
When they got me up to the room, I was really scared. They started getting every minute detail out of me. A lot of it I didn’t know and they had to run more tests. And I had absolutely no one there that I knew. No family, nothing. I was alone. So, I prayed. I asked God to get me through this and to save my baby and keep him in until he thought that he was ready to come. God knows the right time. He knows what he is doing after all HE created all. I put all of my faith and trust in that. After all of the evaluations and the blood test. Oh yeah, did I mention I faint at the sight of blood and blood test? Yep, I sure do and they did numerous blood tests on me. I could count on the fact that at 4 am every morning my little vampire lady would be there ready to get more out of me.
But, back to what I was saying. After all the tests they put me on strict bed rest which meant a catheter. And a liquid diet. Did I mention I am a big girl? They took my food. Well, I was going through this roller coaster of emotions. It was one of the scariest moments in my life going through this. I mean, you read about things and you think oh yeah, in the hospital. I can get some rest and away from these kids. But, you never take into account the emotions and that you go to and the worry and the reason you would have to be in there. Well, it hit me with full force. I won’t bore you with all details, but, I kept getting moved back and forth from the intensive care unit to a regular room. The last time. I was asleep and woke up to a lot of bleeding I called the nurse in and I wasn’t really scared at first because during my stay I had had a lot of bleeding going on and they said that it was ok. The norm was they were able to stop it. This time, they couldn’t. I got scared when I heard emergency c-section within the next ½ hour or we aren’t saving either of them. That is the precise moment I freaked. It was 9:17pm. I had no idea who to call or how I could get someone up there in time I called my Sister in law. My nephew answered the phone and I do believe I yelled at the poor boy. I don’t remember it but, I talked to her and they were up there in a matter of minutes. My husband pulled in to the parking garage at the moment that Johnathan was born. We kept the ticket. Talk about making good time.
Johnathan Thomas Michael Poling was born at 9:44 p.m. Weighing in at a whopping 1lb 15 1\2 oz. and 13 ¼ inches long. He was the length of a Barbie doll to give you some perspective on how little he was.

My book

I am going to start leaving parts of my book here. Since I can't find a disk to save it on what better way to save it? Well, as long as I don't forget the password of course. So, from now on you get to read Johnathan's Journey. (Our journey in the NICU as seen through a mother's eyes). I am going to leave the who I dedicate this book to up first. Then I'll start at the beginning and just start leaving a couple of pages every day. Please don't fault me for my grammer and punctuation. This is the first stages and that will come later. Well, here goes.


First and foremost I would like to say without my Lord and Saviour Jesus Christ and Our Father God this book would not be possible.


I would like to dedicate this book to the memory of my son Johnathan "JT" Thomas Michael Poling. You taught me more things than you will ever know, during your brief visit to our world. And you touched more lives and still are bubbas.

To Retta Mitchell: A person who was loved by many and who loved children with all of her heart. She was what true humanity and compassion is about. Thanks for lending her to us Lord.

To Stacy who loved my son as much as I did and who fought for him right along side with me. Thanks for all the support and just letting me be ME. I love ya!! (See Lulua, I kept her).

Finally, to my family who has been through this with me and without them here helping me through this I don’t think I would have had a reason to continue on.


So there is the dedication part.

Tune in tomorrow for the beginning.

Anger

I have been reading alot of blogs of families that are going through really hard times. Their babies have trisomy 18. I have read their stories and prayed for them and although my son didn't have T-18, I can understand their feelings. The anger, the joy, the emotions that I have been going through just reading their entries. It has helped bring back memories of my time with Johnathan that I have blocked out. Not because I wanted to but, because I think that I had to. I had to to be able to cope and to live and make it this far. I can so associate with their anger. I had so much. And even though it isn't gone I understand.
My pastor said something at my son's funeral, that helped me so much. I thought that I was hiding my anger from God. Oh yeah, how do you do that? God knows my heart and it is an open book just laying open for him to read.

My pastor said: It is ok to be angry with God. David was angry with HIM. He let him know and look at the rewards that God laid at his feet for being honest and showing his true feelings to him.

Now, I can't quote scripture like some. I admire people that can do that. I remember the Bible like one would remember parts of a book. About the only verse I can quote to you is John 3:16: For God so loved the world that he gave his ONLY begotten son that who so ever believe in him should have eternal life.

Now, ask me to remember another verse and it isn't happening.

I have struggled these past almost 9 months with my relationsship with God. I try to steer clear of the Word. I see a bible verse, whoops I scroll fast. It scares me, to think that I can't read his word anymore. I am working on establishing my relationship back with Him.

And I know he is waiting for me to do that. And he is a kind loving father who understands that something devastating has happened to me he knows that I just need time. I pray, oh my goodness, do I pray. I talk to Him everyday. I thank him for the blessings that he bestows upon me even though I have been trying to hide from him. I praise him for the wonderful things he still does in my life.

It is just the Bible I can't pick up. I read the Bible to Johnathan all the time. I don't know why I can't read it for myself. I made sure that he knew who Jesus was before he met him. I didn't want him going to Heaven and not know the gift that was given us when he died on the cross. I wanted JT to know his story so that when he met him he could say I KNOW YOU.

So, then why can't I do for myself? I still don't know that answer. I know that I need to just mediate in prayer about it.

If anyone reads this sorry if it doesn't make any sense, I just have so many emotions running through me and I jsut write them as they come and that could be confusing for some people.

Thanks for listening.

My real blog is at wordpress

Here is the link: http://siscaboo.wordpress.com/


Hope you all enjoy that one because I can never make this one work. The funny thing is I just found it again. lol.