As I think back to the day Owen was extubated, I could not be more proud of him. From the beginning, our son showed amazing strength and never complained, instead he fought. He is so willful and determined. When the tube was removed that day, all of Owen’s doctors could not believe how well he was doing. He didn’t even need supplemental oxygen. They kept it on him just in case. They kept telling me how remarkable he was doing and how well he was healing. It was refreshing to hear good news. It made me think that we could go home sooner than we expected. I started to feel okay with the idea of going home to see our son Michael. I was finally starting to feel okay with switching places with my husband. He could come be with Owen and I could go home and spend some time with Michael. I also finally felt like it was an appropriate time to have Michael come and see his little brother.
I could tell that Owen was hungry and wanted to drink from his bottle. I kept asking the nurses if we could try feeding him from his bottle instead of his feeding tube. He was becoming aware of his feeding tube and would often try and grab at it to pull it out. Classic Owen. They were hesitant to have Owen feed from his bottle so quickly for a few reasons. Apparently, tongue reduction surgery is one of the most painful surgeries that is done at CHOP. They also wanted to make sure his stitches would be okay. I think if I hadn’t pushed the issue, he would have been in the hospital longer. I knew Owen would be okay. There is just something about mother’s and their children. They truly know what their children need. I can’t really put it into words. I just knew that what he needed was his bottle and that clearing that hurdle was one step closer to Owen coming home. Eventually, after about a day of persistence, they agreed to let Owen try to take a few ounces from his bottle. They told me not to be surprised if Owen struggled. They said he most likely would be uncomfortable and it may take some time. When Owen saw me bring out his bottle he started moving all over the place and was crying for it. He took it without a single problem. He never ceased to amaze me during his recovery. He never once acted like he was in pain. He never once had any issue feeding from his bottle. Again, he defied the odds and the standard norm. The fight in our son is incredible. There were so many moments during his recovery that I would look at him and just knew that one day he would move mountains. One day he would accomplish whatever he put his mind too. If you could look up the word determination in the dictionary and find a picture, I swear you would see the face of a BWS child. They are truly resilient. Owen was finally allowed to eat as much as he wanted from his bottle which made him so much happier. At this point, he was completely weened off the morphine and was just on Tylenol. I spoke with my husband and told him it was okay for him to bring Michael to come see him. I was nervous of course. Owen was still hooked to monitors and had the feeding tube and oxygen tubing taped in place on his face. I knew Michael would ask questions. I just prayed that God would give me the strength and courage to explain things the best way I could to a three year old.
Mike came to the hospital with Michael Jr. and again my heart exploded. It felt like forever since I hugged them both. God I missed my family so much. The feeling of separation was so exhausting and all consuming. Michael Jr. ran to me and hugged me so hard. I knew he missed me. I instantly started to feel the infamous mom guilt. Should I have come home sooner? What will Michael remember from this time of his life? Will he remember that his mom left him for days and he couldn’t understand why? Would he remember his little brother was away for so long? Would he remember seeing Owen with the feeding tube and oxygen? I tried, in that moment, to push those thoughts aside and just enjoy the embrace of my little boy. God he looked so big to me! He looked older then when I last saw him in person just a few days earlier. I held back my emotions and held Michael tight. I asked him if he wanted to go and see his little brother and his face lit up with joy. I told him he would look a little different then he does at home. He wasn’t quite sure what I meant by that, I could tell. His mind had one focus and one focus only. He wanted to see his little brother. We walked into Owen’s room and Michael sprinted over to his crib. Michael and Owen couldn’t be happier to see each other. They both smiled so big and instantly reached for each other. Instant tears welled in my eyes. I gave my husband and hug and a kiss. I equally missed him and I could tell he was wearing thin. It’s not easy to have your life upended and have to adjust. Our family was dismembered in what seemed like an instant and him and I had to try and adjust while also try and deal with the emotions that came with it all. As I looked at my husband, my thoughts were interrupted by Michael Jr. He started asking me what was on Owen’s face and if he was okay. He had a look of concern on his face. I tried to explain to him the best I could what was going on. When I explained to him that Owen needed his tongue fixed he asked me the best question. But why? That was his question. It was in that moment that I truly realized how beautiful children and their innocence are. Michael saw nothing wrong with his brother. He couldn’t understand why there was anything that needed to be fixed. In his perfect three year old mind, nothing was wrong with Owen’s tongue. Nothing needed to be changed. He saw Owen for everything he was. In that moment, I wished that the mentality of my three year old was one that everyone in the world possessed, but I knew that was wishful thinking. My husband and I explained to Michael that Owen needed his tongue fixed, not because it didn’t look right, but because it was stopping him from breathing while he slept. Next, he asked the question that I was dreading. Can he come home now? I knew this question was eventually going to come up and I knew that I was going to have to tell him no. I told Michael he would come home soon and he started to get upset. He didn’t understand why we couldn’t all go home together as a family. In an effort to calm him down I told him that I would come home that night to spend some time with him. That seemed to distract him for the time being. Even though I was balancing the guilt I felt when I left that day, I do think it was the right decision. As much as Owen needed me so did his brother. Owen would have a team of people around him, including my sister who stopped in everyday. I went home that night and Mike stayed with him. I thought I would be okay leaving him but it was extremely difficult. CHOP had a camera above his bed so I was able to check in on him. As much as I thought that would be comforting it actually made it harder. I felt helpless when I would see him cry on the monitor and couldn’t be there to comfort him. I was distracted at home when I was with Michael, but when he went to sleep Owen was all I thought about.
The next day my husband came home and I was planning on going back to CHOP to stay with Owen until he was discharged. While I was getting ready to make my way there, I received a phone call from my sister. My sister told me that Owen was a mess and inconsolable. Every time she went to put him down he would scream and scream. I asked my sister if he had pooped and if his stomach was hard. She immediately knew where I was going and she told me that she was pretty positive he was constipated from the morphine he was on. In my head I thought, morphine? They took him off morphine. Why is he back on morphine?!I got off the phone with her and immediately called the nurse practitioner that was taking care of him. She told me about the situation and told me that she thought Owen was in pain so they put him back on morphine. I was so frustrated! I had asked in the very beginning for him to be put on a stool softener since he was going to be on morphine for a few days. They told me that they don’t do that because they get nervous about dehydration. I tried to nicely tell the nurse practitioner that Owen was constipated and that putting him back on morphine was compounding the problem. I knew my son was not in pain from his mouth. He was in pain because his belly was full and distended! Again, in crept the mom guilt. Of course all hell breaks lose when I decide to leave and go home for a night. It was in that moment that I told my husband I wasn’t coming home again until Owen came with me.
When I arrived at the hospital that day Owen looked absolutely exhausted. I felt horrible for him. I called the nurse practitioner and demanded that he receive a suppository. I finally was becoming that crazy mom. I couldn’t be nice about my wishes for my son anymore. He hadn’t slept in almost 24 hours and his belly was so full. I could tell just by looking at him. At first, they argued with me that he did not need a suppository because he was having a bowel movement everyday. While that was true, one bowel movement a day for Owen was not enough. He normally had at least 5 or 6. It was in that moment that I realized, in order for Owen to come home, I needed to stay there and advocate for him. Not because the doctors and nurses didn’t know what they were doing, but because no one knows him like I do. I knew what he needed, so I needed to be the one that was his voice to get it for him. I told them I no longer wanted Owen on the morphine and again told them I wanted him to get a suppository. Finally, they gave Owen the suppository and I swear, after one bowel movement, he was a different child. He was back to smiling and sleeping like he normally did at home. I do not fault CHOP for the minor misstep in his recovery process. I knew their intentions were focused on managing Owen’s pain. It’s hard to not think about how much pain he could be in when your looking at his tongue that was completely stitched back together. However I did realize, the setback in his recovery would delay him coming home because morphine had been restarted. They needed to ween him off of it again. Even though I was frustrated I knew that was the right thing to do.
Over the course of the next few days Owen continued to recover and nothing stood in the way of him and his bottle. It had been days since he used the feeding tube. He continued to have issues with his belly but as the days passed it started to get better. I remember speaking with his surgeon the day before he got discharged. He was amazed by how well Owen was doing and he agreed with me that he felt he no longer needed his feeding tube. He told a nurse to finally remove it ! Finally Owen was free from all the monitors! He was completely unhooked! We were transferred to a step down unit that day and he was finally discharged the next morning. We were at CHOP for a total of 10 very long and grueling days.
I remember loading Owen and all of our things in the car. Owen had the biggest smile on his face. He knew that we were finally going home. I put him in the car and then got in the front seat. I sat there for a good five minutes and just stared out the window. I replayed the last ten days in my head. I was overcome with a surge of emotion and started sobbing in my car. Why was I crying?! I had Owen in the car and we were FINALLY leaving! We were finally going home to our family. Yet I continued to sob and sob. I think in that moment, the reality of the past 10 days hit me and unloaded on me like a ton of bricks. I never had a chance during those 10 days to really feel the effects of what was happening. I was in survival mode. My mind was on Owen and what he needed. So instead of stopping myself from the tears and emotion I felt, I let myself feel them the whole 40 minute drive home. I don’t ever remember crying that hard before but I didn’t care. It felt good to let all my emotions out. Everyday I was constantly putting my big girl pants on. I was always putting on a strong face when inside I was falling apart. Inside I was a nervous wreck. During that car ride home I finally allowed myself to feel the emotions of the past two months. I never even realized how big those emotions were until I allowed them to pour out in my tears. I finally pulled into my driveway at home and wiped my face. Time to put the big girl pants back on. We were finally home. I opened the door to get Owen out of the car and I looked down at him. He was all smiles, stitches and all. This boy was already moving mountains and he didn’t even know it…