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.