One year ago today began the hardest day of our entire lives. Just the week before, we were admitted to Boston Children's Hospital after a routine procedure and bloodwork. We thought that we would just be there for a few days for a quick tune up. We always went to the Cardiac ICU due to Isaac's complexity and because he was on a ventilator.
Isaac in his Kid Kart about to leave home for his last outpatient appointment
About 2 days into the admission, I noticed that Isaac's abdomen was suddenly becoming larger and his feeds were backing up (which they never did). After some tests were run, the doctors decided that Isaac needed an emergency exploratory abdominal surgery. Without the surgery, they believed that Isaac would die in a matter of hours, but, neither the surgeon or cardiologist thought that he would survive the surgery. Many "typical" children did not survive this type of surgery, and Isaac was extremely complex. I can still remember them taking him to the OR as I begged them to take care of my baby. I could not even imagine losing my baby boy during surgery. I have to say that this was the most difficult wait of any surgery. The odds were so stacked against him and it was extremely likely that he would not survive. I did the only thing that I knew to do, and that was to rely on God and pray like I had never prayed before. When the surgeon came out after Isaac's surgery, and Isaac was still alive, I cannot even begin to tell you the immense relief and joy that I felt at that moment. They had found that Isaac's intestines had twisted, and they were able to repair it. Due to swelling, it was common procedure to leave the abdomen open after this type of surgery with the intestines on the outside of the body in a mesh type of pouch and then covered with bandages. The surgeon explained that he was still not out of the woods and that there would be more surgeries involved, but I was just so relieved and thankful that he was alive.
That night, as I was trying to get a little sleep in his room, I could hear one of the senior fellows, Henry in the room, and I knew something wasn't right. I immediately got up to find that Isaac's labs were showing that his liver was shutting down which was causing him to have bleeding issues. He was needing constant transfusions of all types due to this. This was a major blow having another organ failure thrown into the mix, but the hope was that the liver could potentially just be in shock due to the surgery, and we would support Isaac the best that we could and wait it out. During the next few days, Isaac was needing increased support. On top of his liver not working, his kidneys were also not working. Instead of improving, he was continuing to get worse. He looked very rough. If you ever hear a cardiac mom who has been through a few open heart surgeries say that their child looks rough, that is a very bad thing. I knew that things were looking very, very, very bad. He was the most swollen he had ever been. His skin was breaking down everywhere. His color had changed. He was yellow, and red, and purple. He was in such rough shape. His body looked 100x worse than it ever had. But even in the midst of this, I continued to have faith that even this was not too hard for God.
A couple days in, they brought in a regular bed to move Isaac into instead of his crib. Although I was happy to be able to lay down with Isaac and snuggle with him, I knew what this meant. After having spent so much time in the Cardiac ICU with Isaac in the past, I knew they were doing this because they were convinced that he was dying. And spend time with him is what I did. We snuggled together. I slept in his bed. We read stories. I helped take care of him, including helping change the bandages on his intestines. We listened to music. I sang to him. I prayed with him. I didn't leave his room. I didn't shower, eat, or drink. I was probably the greasiest and stinkiest parent ever, having not showered for 5 days, but I didn't care. It was just too risky to leave him for any amount of time. I wanted to spend every second with him.
Each day he continued to get worse, and it was finally time that they decided they needed to wash out his abdomen and take a look at his intestines to see what part them were still alive and that they could save. If there were parts that were dead, they would have to cut those parts out. Because of his liver not working, this was extremely risky. It was very likely that this could kill him, but once again, it had to be done. They were going to do this at bedside in his room with the surgeon and Cardiac ICU staff. I cannot tell you how hard it was to walk away from him and hoping that this was not the last time that I saw him alive. I just couldn't leave him. Finally, one of Isaac's team nurses, Stephanie, walked us out. She assured me that she loved Isaac and would do everything she could to look out for him.
It wasn't too long before Stephanie came back out to get us, and thus began the worst 24 hours of our lives.Once in the room, the surgeon informed us that all of his intestines were dead. There was nothing that they could save. I even asked about a intestine transplant, but his intestines were so bad that there was not a way to take them out while keeping him alive. There was now no more that they could do for him. They desperately wanted to help him, but they couldn't. I cannot tell you how hard that is to hear. As a parent, you want to do everything you can for your child, but there was nothing more that I could do or that the doctors could do. It was all too much to grasp.
How in the world were we going to tell Abi and Koah? They loved their brother so much!
I didn't think I could tell them, nor did I want to leave Isaac's side for fear of something happening to him while I was gone. Jason and Kate (Childlife Specialist), along with my mom, took the children to one of the playrooms so they could explain to Abi and Koah what was going on. It did not go well at all. Koah was having a very rough time, so they came and got me. When I walked into that playroom, the image that I saw of Koah is forever burned into my memory. He was holding out his arm and wailing Isaac, Isaac, over and over again. He was taking it so hard. He said he was the worst brother ever because Isaac had saved his life, but he couldn't save Isaac's. He just wanted to hold Isaac again and read to him.
Although we knew that the circumstances looked terrible, I continued to have faith that God could still fix this. So we continued to pray. Even though, medically speaking it was impossible for him to survive, I knew that for me personally, I could not withdraw life support. I knew that it was something that I personally could not live with, and thankfully, no one even mentioned that as something that I should consider (I am not saying it is wrong, it is just something that I know that I could not emotionally handle). We did choose not to do chest compressions due to his open abdomen, but we chose to still use code drugs if needed. I know this may not make any sense to some of you, but it was what made sense to us. I needed to feel like I gave Isaac every chance at life, however impossible it may have seemed. I did not want him to suffer, and he didn't, but at the same time, I needed to know that I gave him every chance possible. I couldn't handle one more "what if?".
Once all of the family that was coming that night flew in, they let me hold Isaac for the first time since his surgery. We all spent time with Isaac that night together in his room. After the rest of the family left, Koah stayed behind with Jason and I. They let Koah hold him and also read to him like he wanted. As Koah left for the night, I can still remember him turning around as I was holding Isaac and saying "Goodnight Isaac. I love you. See you tomorrow" as he said to him everynight.
About three hours later, as I was holding Isaac in my arms in his bed, and Jason was standing right beside us, Isaac's blood pressure and heart rate started dipping. The cardiac team came in and started administering medications. Up until this point, I was still praying and believing God for a miracle, but at this exact moment, I felt in my heart that I was about to lose my son. I kept telling them that I wasn't ready yet. We didn't expect this to happen so soon. How can you ever be ready to lose your son? While they continued to push medications, I pulled Isaac close to me and started talking in his ear. I told him how much I loved him. I told him how proud I was of him. I told him about heaven and how beautiful it was. I told him that God was going to take care of him now, but that one day I would see him again. That time with him is so precious to me. Although there was so much going on in his room, it was as if it was just the two of us. I can still feel Dr. Allan put her hand on my shoulder to let me know his heart had stopped. We had lost our baby boy to heaven. I just held him as Jason and I cried together.
They told me that I could hold him for as long as I wanted. They probably didn't realize that I would have held him forever. I held him all night long. The next morning, we had many visitors. I cannot tell you how incredibly supportive Boston Children's was. They had become our second family. They not only loved Isaac, but they sincerely cared about us. I didn't find this out until later, but once they knew that there was nothing left they could do for Isaac, they had a meeting with many people to try to come up with a plan on what they could do to support us during this time. There were so many people there who loved our son. And support us they did. They allowed me to continue to hold him during the morning. I held him for 12 straight hours while sitting in his bed. Then they let me bathe him and get him dressed. I was finally able to hold and carry my son for the first time ever without being attached to anything. I had dreamed of that day.....I just thought it would be while he was alive.
The chaplain arranged a special service downstairs for us. I carried my son in my arms downstairs and Jason and I were able to hold him during the beautiful service that Chaplain Michele had planned for us. After the service, the family left the room so that just Jason and I could spend some more time with Isaac before having to hand him over to the morgue.
I asked for a rocking chair, and our wonderful nurse, Mike, was able to find one for me and bring it into the room. I rocked him, and sang to him, and danced with him. There were so many things I told him. I knew that he wasn't really there, that it was just his body, but that was all that I had left of him. I remember saying to him "If I miss you this much already, and you're still in my arms, how am I going to do this"? As heartbreaking as it was, those are moments that I will treasure forever. And as weird or different as it may seem, I needed those moments to help me through my grief. I am so thankful that they gave me that time with him.
The time finally came to hand my baby over to the morgue. I knew it was just his body, but there was something that just felt so wrong about leaving him there. While Isaac was in the hospital, Jason and I felt strongly that we should have someone with Isaac at all times, as much as possible. We slept in his room. We took full responsibility for his care, so handing him over (even if it was just his body), just felt so wrong.
It has now been one year since we lost Isaac to heaven, and the pain is still there. We will always miss him. He is such a huge part of our family and we are who we are today because we were given the privilege of loving him.
One of the hardest things for me in the beginning, besides having to learn to live without my son, was I felt that I had in some way let Isaac down, and let me tell you, that is the absolute worst feeling in the world. I was his Mommy, his full time caregiver. I was supposed to protect him, and I tried with every fiber of my being. I struggled with thinking that I could have done something to prevent his death. I started second guessing every medical decision ever made. I remember telling Isaac over and over again "I'm so sorry, Isaaac....I'm so sorry". My job, as his mom, was to protect him. I wanted nothing more than to watch him grow up. I took the responsibility of being his mom very seriously. I took complete charge of his care and took care of him 24 hours a day. I managed his home vent, suctioning, meds every 2-4 hours (about 30 meds a day and I could have told you his dosage and frequency by heart), feeds, trach and g-j tube care, twice a day weights, keeping track of his ins and outs (which included weighing his diapers). I didn't want anyone else to do it, because I felt like I knew him more than anyone else and I wanted the full responsibility of his care. I knew what his norms were. I knew what meds did and didn't work for him. I knew what his labs should be. I knew what a good blood gas and good Chem 10 (or CMP) were for him. I knew when to call the doctor. I was overly protective of him because I needed to be. Whenever he went to the hospital for any reason, even just an outpatient appointment, I had him put on reverse contact precautions to protect him. I was fully involved in all decisions with his doctors. I was extremely involved in his care and in the decision making. So, when I lost him, I felt that I was to blame. I second guessed every decision I had made for him. I should have done this.....I should have said no to that.......what if we had done this........I should have pushed to have this sooner.......I should have known........and the list could go on and on. No matter how many times one of the doctors would tell me that there was nothing I could have done, it didn't matter. I remember Dr. Allan telling me that when Isaac was discharged, that they started counting down the hours until he would be back, but then the hours turned to days, the days to weeks, and the weeks to months. She said that I had done a better job taking care of him than they had (obviously it was God and them that had brought him to the point where he could be discharged), but I still felt responsible for losing him. I had let my son down. I failed at my duty to keep him alive. I wanted nothing more than to watch him grow up, but I had somehow let him down. That was the absolute most difficult part of the grieving process for me. And to be completely honest, I still have moments like that were the "what ifs" come in. I have to believe that Isaac's days were written long before he ever took his first breath. I have to believe that God knew exactly when He was going to call Isaac back home, and that is quite honestly the only thing that gives me peace when the "what ifs" come.
Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be. Psalm 139:16
It has now been a year since I held Isaac for the last time while he was still alive here on this earth. So much has happened in that year. It has been one of the hardest years, but it has also been one of the most beautiful years. There isn't a day that goes by that I don't miss my baby boy. But there also isn't a day that goes by when I am not so thankful for the time that we had with him no matter how short it may have been and for the incredible lessons that he taught us about love, life, value, worth, strength, and courage. I am so blessed to have been his mommy, and although his life on this earth may be over, I am so thankful that his legacy continues on.
And when I stop to think about it, although last year was the absolute worst day of our lives, it was the most beautiful day in our son's life.
We love you forever, Isaac. We are one year closer to being reunited with you.