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.

la la la la la la la

Well, my life has been crazy as ever. I sometimes do not know what I am doing from one moment to the next. I mess up things and forget things. I need a secretary to keep my life straight. I think I know what is going on and wham an emergency happens and well, everything is all messed up again. My poor girls don't know what is going on either. I try to spend at least one day a week home from the hospital and well, they have no interest in me. Totally sucks. Then I tried to have a talk with them about JT and they are in denial and will not hear about it. Well, that is about it for my self pity section.