This was written by a special angel Mommy, who lost her precious little boy a year ago on July 21st, 2012. This is her account of the events of that day. One of the goals of PJM is to bring awareness to the heartbreak of child loss. I believe that this testimony is a wonderful example of how God finds us in our pain and carries us through. This is a longer post that usual, but I wanted to share this with you. I pray it will be a blessing to you.
Day of the week speaking, tomorrow (Sun July 21) is the first anniversary of Isaac’s passing. There are some compounding factors not related to him at all, but I’m not doing well. It’s been an extremely hard week. I’m dreading tomorrow and tear up every time I think about it. Like I have done countless times this year, I’ve been stopping to remember the day. The day I literally felt my heart break- I thought it was just an expression. It’s not. The day I lost my baby. The day he took part of me with him; leaving a shell of me behind. I was thinking today that the name of Isaac means laughter and I haven’t laughed much since he left. I know it’s a part of grief but going through it has sucked the life out of me.
A phone call from the on- call Dr woke us up at 12:30 am. I can’t remember why I talked to her, maybe the phone was closest to me. In a no nonsense matter she said “Isaac has built up fluid again and you need to make a decision. We either insert a chest tube and try to get rid of the fluid or do comfort care (meaning we take him off machines and hold him until he passes).” I couldn’t believe what I was hearing. I knew his co2 levels had been climbing but I hadn’t expected this call. It was an unstated expectation that I make the decision in less than 10 seconds. It was like I was driving a freight train with 2 tunnels racing at me and I had to choose which one to go in. I asked for a moment and told Preston our choices; the voices in my head screaming. We both decided that the chest tubes had worked before and we didn’t think it was time to do comfort care so I asked the Dr to insert the tube.
Then I laid there and thought ‘Did we make the correct decision?’ I got out of bed and prayed by my side. I’m pretty sure Preston did the same. I now wish we would have prayed together and stood together in God’s presence with our pleas. But we were tired. It was the middle of the night. It had been an exhausting 41 days since his birth; we did what we did. Something else I have regretted since, we decided to go back to sleep, wake up with the kids and go to the hospital after 10- when parents were allowed to go in. I wish I would have been there to hold his hand longer. I just didn’t know my time left with him was less than 24 hours. We tried so hard to find a good balance to taking care of all our kids. So hard.
I went over to my in laws to call for an update around 7am. He had a nurse who had never been with him before. She proceeded to tell me things that I already knew; explaining him like it was my first time meeting him. I was annoyed. Her report wasn’t good. I hung up and cried. My mother in law hugged me and was so sorry we had to go through this. We sent the children with her to Church and headed to the hospital. It was a long, quiet ride. On the way, Preston reminded me that 6 days prior he felt God telling him that on Sunday there would be a change. We assumed and/or hoped that the change would be for the good and Isaac would be healed and would go home with us.
Even though we arrived when parents were allowed to go into the NICU, we were asked to wait in the waiting room. They must have been doing some procedure to Isaac. We waited for awhile I think. Another Dr was on call now; the one I really liked. God’s angel in Dr form- I’m now convinced. Another nurse- one I was familiar with, was now Isaac’s nurse- I was happy about that too. They told us that the chest tube was inserted but he still had fluid. They suggested that we give them permission to try to give him steroids to reduce the fluid. We gave permission. I don’t think he ever got the steroids. We sat with him for awhile but then went to get lunch. I think he was having something done and we were asked to leave for awhile.
So we went to lunch thinking he was going to get steroids and would get better. All that came crashing down when we went back up. It could have been a longer time frame but in my memory we went back into the room and within moments we were talking about letting him go. Again, I did not see this coming. I felt like I was being run over by a bus; it came so quick and fast. Isaac’s co2 levels kept rising; he was fighting everything they were trying to do; they couldn’t get the levels down. The Dr had been called over to his bed, she was manually squeezing air into his lungs to try to get oxygen in. She called a specialist- ironically the heart Dr we had seen while Isaac was in vitro- to come check his lungs. The picture wasn’t good. To me, it looked like his right lung was stone. She said it was irreparable damage. At this point, she got very honest. He was down to one lung. She was pushing air into his lungs at such a high pressure that it would have destroyed our lungs but yet it hardly moved his lungs at all. His co2 levels had spiked so many times that she feared there would be brain damage. ‘He wouldn’t be the same Isaac, I’m afraid.’ In her kind, gentle way; she wouldn’t even pose the question to us, so we wouldn’t have to utter the words ‘take him off support.’ She said please trust me and let’s do what is best for him. We both knew what that meant and we agreed.
(Feel free to take a break to blow your nose, I am)
I think at this point or maybe before hand, Preston and I went to a private room to pow wow. My mom and sister had arrived. I now wish I had taken some more time to talk to my husband and pray but I saw my Mom and wanted to talk to her; you never out grow needing your Momma. Dividers were put up around Isaac’s corner to give us some privacy. My Mom and sister were given special permission to come in the room with us. The Dr was in take charge mode but did it ever so sweetly. She ordered for Isaac to be given a bath, by me, for clothes to be found that would go over his defect and all the tubes. The goal was to keep him alive in order for our children, Preston’s parents and sister to come see him; 5 out of the 6 of them hadn’t met him yet. Dr Bode continued to manually bag Isaac while the nurse helped me bath him. I was trying to savor every moment because I knew it was the last chance I had. At this point we had another nurse, one I had met before but not one I had built a relationship with- I think that was the best for everyone. God knew what He was doing when He made up the shift schedule that day. After Isaac was clean and clothed, they brought a rocking chair in for me to sit in while I held him. MY FIRST TIME EVER HOLDING HIM. I had waited 6 1/2 long weeks for this moment. I was so excited but so heart broken bc I knew it was my first and last time. That Dr sat on a foot stool near my feet and pumped air into that baby while I held him. Preston stood lovingly next to me, rubbing my shoulders. When Isaac was stable, it was time to move to the private room. God had worked it out for this to happen during a shift change which meant the parents were out of the NICU. In fact, just as we were making our way through the halls it was time for them to re enter but Dr Bode barked for the doors to be reclosed and the parents be asked to wait a moment. Such a blessing. We didn’t have to be on display for all to see. I held Isaac as the Dr walked next to me giving him oxygen (all in all, that woman probably pumped air into our baby for 2-3 hours, having 2 short breaks. Nurses asked if she wanted to be relieved and she refused.) Preston walked behind me. A nurse was behind him holding tubes and other things. A respirator tech was behind her bringing the oxygen. My mom and sister were in the parade somewhere too.
The rest of the family arrived shortly after. The kids sat on the couch next to us and each took turns holding Isaac. We had family pictures taken. The Dr kindly talked to the kids; she was very adamant that this process be very kid friendly, she did not want them to be scared. She really did a good job at protecting their hearts. Then it was time to say good bye. She quietly advised us that she would slowly stop pumping and then Isaac would let out his last breath. She predicted that it wouldn’t take long bc he was probably around in a coma bc of the lack of oxygen. She was right. Seconds after she stopped pumping, I felt the last breath as I held him. I’m still surprised by it. Even when we were told he may die, when I envisioned having to hold his funeral, I still didn’t think I would actually have to do it. I thought God was going to heal him just like hundreds of people had asked him to do for 9 months. The rest of the family took turns holding Isaac; Preston’s Dad chose not to. Then they took the kids home so we could finish up.
We had paper work to fill out, decisions about the funeral home to make. Isaac’s foot prints were taken. We were told we could have as much time with Isaac as we wanted. He was given to me again. But at this point, his body was starting to get cold and it was too much for me to take. I gave him to Preston. I went out with a grief specialist to give Preston some time with Isaac. And then we left. Down the elevators and out the doors that we had be in and through hundreds of time. For the last time. It was so surreal. Our good friends Ben and Kirsten arrived just as we were leaving; state troopers aren’t allowed to leave while on duty very easily. They went with us to the Ronald McDonald house to pick up our belongings. The hospital must have called them because the man on duty came and told us that we didn’t need to clean the room. So kind. I left a note for the house manager who we had built a relationship with. There was a mother and grandmother there whose daughter had a similar problem to Isaac. The mom gave me a quizzical look and I told her Isaac had passed away and wished her much luck with her daughter. I didn’t wish what we were going through on anyone. Preston drove us home with our friends following behind.
A year hasn’t erased the memories or hurt. I was wondering to myself today if I had healed any yet. On some days I think I have and reality is I probably have a bit, but the wound is still very open. As it probably should be. Some moments I think ‘maybe I’ll feel better when I have a baby of my own to hold and keep’. And probably in ways I will. But whomever comes next won’t replace Isaac. He’ll always be my sweet, strong, handsome boy. There will only ever be one Isaac Kosuke. I’m so very sad that I didn’t have more time with him but I am thankful that I had 42 days. I’m thankful I saw his beautiful eyes. I’m thankful for the times he teased me and showed me some orneriness. I’m thankful for the moments I read and sang to him or just quietly held his hand. i’m thankful for our special firework night. I’m thankful for the times i watched my husband be his Daddy. I’m thankful for his life.
I love you Isaac.
Original material by Carrie Diehl, ©2013. May not be used or re-printed without permission. bpspecialp07-22-13