Cohen's last day in the hospital pt 1

I struggled with a title for this post. I had "Cohen's last day" and I didn't like the sound of it. True, it was his last day. It was his last day at the hospital and it was his last day with us physically....on earth. It wasn't his last day to exist with us. So, of course, I'm not ever going to blog that way either. And even though I have "part 1" above....I have no idea how many parts there will be, or if I will even indicate parts. The parts and pieces of our last day at the hospital with Cohen will never all be posted. I'm not sure that would be possible. Our 12 days of memories with him could never all be posted either. I think of new things all the time that didn't occur to me at the actual time. Maybe I'll blog them as they come to me, maybe I won't.

I'm already struggling to type this post and I've tried to write it so many times in my head. I struggle to see these pictures. I love the pictures though.

Brent and I did not have a choice as to whether or not Cohen would stay with us on earth or if it was his time to go to Heaven. God answers prayers. I think you will find that evident in this post. The decision was made for us and we are thankful for that. We prayed for Cohen to be healed. Believe me, we are unimaginably sad that he isn't here with us. However, we are so thankful that he is where he is, healed and thriving. He is playing with his friends and our grandparents are rocking him to sleep at night. The good news is, we get to see him again someday. Not a day will go by where we won't think about him and miss him. We have so much of him in our hearts. We also have precious pictures of him. We will see him in the faces our of our future children. We hear music that reminds us of him. I could go on and on.

Gosh where to begin. The last post I did when we were in the hospital, Cohen was starting dialysis. That was on June 17th, a Thursday.

On Thursday, after my blog post and right around the time Cohen started dialysis, Brent and I went to the cafeteria to get food. Soon after, we got a call from my mom that the social worker just ran into the waiting area looking for us. She got on the phone and told us that that the doctors were having trouble with Cohen's breathing tube and were having to stabilize him. We went back up to the floor and met with the social worker and one of the doctors. At the time, there wasn't a known reason for what happened when they switched the breathing tube that day. He started to crash. They stabilized him and his vitals went back and the dialysis went on about it's way. The doctor basically went over the fact that there were many little things that just weren't helping or improving Cohen's state. Overall, the dialysis had to work. Many things had to work and not fail. I'm not sure if I've indicated before, the dialysis wasn't the type of dialysis that most everyone may be familiar with, hemodialysis of the blood. Cohen's was the peritoneal dialysis.

In all honesty, I'm not sure if it was after the Thursday incident or when...but around that time, I remember feeling that we may be losing him. It made me sick to think but I thought my baby might be dying. It seemed like even if there was word of improvement, it always had worse news to follow. We just kept wanting to know why wasn't he getting better? Why when he had good news did bad immediately follow? When was there going to be good news?

I will add that Cohen could breath some (maybe even mostly) on his own, but the breathing tube allowed him not to have to work so hard. The goal was for him to rest and heal.

We aren't sure how successful the dialysis was as it was only administered for about 24 hours before he passed. It was pulling some fluid off of him and that is what he needed. It would have taken time for anyone to know if it was or would work. He was SO swollen from all the medications and procedures. The tissues being swollen from fluids (meds) is known as edema. He had to have those procedures and medications throughout the week to survive. Unfortunately, the things that were helping, were also hurting him at the same time. The medications were poisoning his liver & kidneys and fluids were causing him to get the edema (swelling). With abundant swelling, it makes it difficult, if at all possible, for organs and such to work. Double-edged sword was a term we heard many times while in the hospital.

They (and when I say "they" I'm meaning doctors and nurses) . They did tell us that had it been one of us...Brent or I......anyone, etc. We would not still be alive having gone through so much in such a short time. Each procedure, each surgery, anything..... we had to hold our breath and wonder if he was going to make it. He amazed us over and over again. We had to sign at least one consent form before each surgery confirming we knew just what was happening. It was a risk but one that had to be taken.

On Friday, June 18th, we were listening to Cohen's round (when the doctors and nurses talk in front of his room about what's going on at the time with him) and hearing how his levels and such were doing. They felt some of the swelling had gone down so they needed to replace his breathing tube. They needed to put a bigger tube in since there was more open area around the current one. They can do a lot of procedures in the room as it can become sterile. They told us we could suit up and just stay in the back on the couch and it would be an in and out deal. Well, the entire time Cohen was in the hospital, I had an extremely hard time watching anyone do anything to him. Brent knew that and most of the staff probably did too. So I said no, let's just hang outside the room.

About that time, one of the head doctors said he could go over a few things and chat with us while they were doing the tube change. We followed him to a consult room. I knew partially what he was going to say. The dialysis has to work. His liver and kidneys have to kick in. Mostly, and hopefully, all things we'd heard from another doctor the day before. He gave us several scenarios. Each one was harder to hear. The last one consisted of Cohen being on dialysis for weeks or months and it still not doing what they needed it to do. They didn't know, and they couldn't know, the outcome. The doctor told us without a doubt, as time went on, it would get harder if he didn't get better. They could be doing all these things and he might not even get better. They simply didn't know..but at the same time, he said they wanted us to try to prepare for, essentially, the worst.

I knew. I knew each and every day would get harder if Cohen didn't heal. So obviously if he wasn't healing, he would be getting sicker and that was harder on his little body. I just tried so hard to process the WHY in all of this. Why wasn't there a guarantee dialysis would work? Why would he maybe have a long road ahead of things appearing to be improving to find out they're not and won't? The days would be hard simply not knowing. I knew Brent and I didn't care how hard the days would be on us! The thought of the days being hard on Cohen is what we hated to consider. I think the only thought about us was that yes, it would be hard on us knowing that we may spend 24 hours a day with him only to have him leave us 2 weeks later, 2 months later, 2 years later. How was that not supposed to cross our mind? It did. We were scared. We didn't care about the hard days, we just wanted his little body healed. We were willing to be at the hospital as long as we needed to be.

I also knew they didn't ALWAYS know when he was in pain. Pain is a fine line. When in a medically induced coma, they check pain with a flash light by looking at the pupil and also by seeing if his stats/vitals rise. He might be in pain then. When his pupils were big, they up his pain medicine. Of course, if they ever had any doubt, they took action. My motherly instinct was to fear pain for him.

After that conversation with the doctor, we cried. We had cried a lot over the past 11 days, but this time felt different. We knew that Cohen had to start showing signs of getting better. The scenarios were scary. We knew that it was a lot for his little body. He had already proved to be such a fighter and now he had so much left to do it seemed. We wanted him healed and we didn't really know if that was happening at all. As I cried, I put my face in my hands and just prayed and prayed that he would be healed and that his little body would have no pain. I prayed that if he couldn't be healed here on earth that he be healed in Heaven. I wanted so much for Cohen to be here with Brent and I but I felt ready for God to show us his plan without the scary scenarios. I thanked God each and every day, many times, for my time with Cohen. In that moment, as I prayed for healing with no pain, I also felt the urge to thank God for my time with Cohen and for blessing me and so many others with Cohen's life.

We walked out of the consult room and around the corner to his room. We didn't even make it down the hall to his room and the nurses began running out of the doors yelling that they needed help. Not a vision I ever wanted to see. Was this really happening? This was the simple breathing tube procedure they had invited us to stay in the room for. We didn't continue to walk. Of course, I immediately start crying and saying I can't watch. I couldn't even handle seeing the staff run in and out yelling so I turned around and starting walking as fast as I could the opposite direction of his room. Brent wanted to be there but didn't want to leave me alone. We got back to the consult room quickly and Brent got my mom. One of the nurses came following close behind us and told Brent and I we just really needed to go ahead and come to Cohen's room. To us, of course, that meant he might not make it. We got partially back down the hall and I didn't know if I could keep going. I stood sobbing watching the doctors and nurses outside his room...who were standing and watching the doctors and nurses on the inside of his room. And I'm not sure if they knew at that point they were going to stabilize him or not, but they told me I should go sit back down. I felt like surely they knew they were going to stabilize him or they wouldn't have sent me away. I just couldn't process anything. I don't know what I was thinking. I went back to the consult room with my mom and Brent went to Cohen's room. Me, my mom, our social worker and a chaplain waited for what seemed like forever. I just kept thinking, is this really happening?! Will they will come get me or should I just go back ...even though they told me to come to the consult room!? Finally, Brent and one of the doctors (who we had just met with ab0ut the scenarios) came through the door. Brent was in tears, but he or the doctor managed to get out that Cohen was stable. Then, Brent cried out "he isn't going to make it."

I can't really tell you how I felt when Brent said those words. I'm not sure there are words that describe it. I still cry when I read them. In that moment, I didn't think that just 30 minutes before I prayed for Cohen to be healed. I had been praying for that all along. Those are things that came to me in the hours to come. During our last few hours with Cohen, I knew it was what I prayed for, but it still hurt so bad.

The doctor explained Cohen had gotten a tear in his trachea. They aren't sure when it happened or how it happened, but it was not repairable in Cohen. They had already gone over everything they possibly could. We asked as many questions as we could cry out in hopes of some possibility of them fixing it. There wasn't any possibility on top of everything else Cohen had going on. We wondered when, where, why and who. I knew. I knew this was it for the trying-to-fix-something-that-can't-be- fixed. There wasn't a fix that Cohen would survive. There were no options? How was that possible? He was sick. It was time for him to be healed without having to fight. Had his trachea not torn that day or the day before, they determined it would have. He was so swollen and so fragile. He was also on the fence for high risk of major infection. His chest was still open from his heart surgery. I could feel that the doctors felt like had it not been this, it would have been something else. They never told us that and we knew they would keep trying no matter what to save our baby. They had always told us that. They would not give up. Except, now they they had no options.

The doctor told us he thought he could keep Cohen going long enough for our families to get there...but to call them right away. He said however the rest of our day needed to be, they would make it happen. From that time on, we had about 6 hours left with our little guy...

Here are some pictures all from our last hours with him. I have many more and I will post more.












Brent's mom took these pictures. She asked us and we said yes. We had pictures throughout the week so why not the day he goes to Heaven. It was our last hours with him and though we will have the memories in our hearts and heads forever, we also can look at the pictures. Brent's mom is also an on-call photographer for NILMDTS (Now I lay me down to sleep). It's an organization that has photographers come in and take pictures of families when an infant may be passing away or stillborn. They offer many other things as well.

The beads you see in this post, and more to come, are part of the "Beads of Courage" program. Cohen earned LOTS of beads during his stay at Children's. I will do a post on that soon.

We highly believe the staff at Children's was amazing and did everything in their power to help Cohen. They were so wonderful to him and to us. We are very thankful to them for helping provide that time we had with Cohen on earth. Though I know it's not in their code to shed tears (that's how the medical field works), they did. To us, that means a lot. They truly fought for our baby.... as they do every baby.

There are more posts about Cohen's last day in the hospital to follow. He was baptized. We got to look into his eyes and hold his hand. He squeezed our fingers. We got to bathe him and change his diaper. He got his footprints and handprints made. We got to hold him as he went to Heaven. I know they will be hard posts to create but I know that I want to. I think he did such amazing things and touched so many people. I will continue to share him. He is part of so many people and it's a feeling that still gives me chills. And though I'm sure it's probably the saddest thing I'll ever watch, I do love the slideshow that was made for his memorial. I will post that at some point as well.

I did type this, but Brent has read it and he did help me.

Though I typed this yesterday, Cohen would have been a month old today, the 7th.

Thank you all for everything. My days are seeming a bit brighter, though I still have lots of tough moments. We have felt so much love and support from all of the readers of this blog and it really does help!

When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire you will not be burned; the flames will not set you ablaze. ~ Isaiah 43:2