April 6, 2018. One day before Owen would be 2 months old, and BWS Awareness day. I remember thinking it was ironic our BWS baby was in the hospital during BWS awareness day. The very syndrome that was supposed to be celebrated with awareness was the same syndrome that had put him there. Irony at its finest. I yearned to hold my son. It had been days. I yearned just to feel his skin against mine. I yearned to comfort him and feel his breath on my cheek. I still had yet to go home. I had been at the hospital with Owen now for 4 days. I was going crazy. I was starting to let my emotions get to me. I was starting to feel trapped. I hadn’t held my newborn in days and I hadn’t seen my son Michael in close to a week. I was craving my family. I craved for us all to be home together. We were not even at the half way mark of Owen’s recovery. How was I supposed to do this? How was I going to last?

Lucky for me, my sister Michelle who works at CHOP as a nurse, consistently stopped in to check on Owen and I. She was my saving grace. Michelle has such an amazing way about her. When she walks into a room she lights it up. She is exactly what children and their families need during the times of stress and heartbreak. She was my light. Without my sister, I would have never gotten through those two weeks. I was so lucky in that sense. There I was craving my family, and although I wasn’t with my husband and my sons, I had my big sister there. There is always a reason that people are placed in your life, that I am sure of. Any one of my sisters being there would have been an incredible comfort, but the fact that it was Michelle was for a reason. Michelle is a fighter. She has overcome impossible odds. She is the exact person that I needed during Owen’s fight for recovery. Michelle was born with one arm. She was told so many times from people, that she couldn’t do the things she set out to do. She was told she could never be a nurse, yet there she was taking care of some of the sickest children and being a light for their families. Michelle needed to be the sister I had there, during those two weeks. God placed her there specifically for me, I know that without a shadow of a doubt.

During rounds, the doctors came in and discussed the plan for extubating Owen. They said they thought he was at the point that they could try and take the tube out, but a plan needed to be in place in case he didn’t breath on his own and needed to be re-intubated. It was all overwhelming, but nothing I hadn’t heard before. I heard conversations like this at work, but its a whole different story when your child is on the other end of the tube. The plan was to have everyone on board and extubate Owen around 12pm. They asked me if I wanted to be there. In my head I thought, “um hello have I left yet?! Of course I want to be there!” But I was aware why they were asking. They wanted me to be aware that if he didn’t breath on his own and they needed to place the tube back in, that it was an emergent situation and I needed to be able to handle it and keep my cool. In order for them to remove the tube around lunch time they needed to ween more morphine back and he was not allowed to eat anything. Great. The two things that I knew would agitate the hell out of him. I knew the next three hours were going to be so long and awful. He was going to constantly be agitated and try to get the tube out. My sister recognized the stress on my face and suggested we take a walk and grab food. Like I said, she has such an amazing way about her. She recognizes what you need before you even realize it yourself.

My sister and I went down to the cafeteria and I remember she asked me how I was feeling, how I was holding up. I wasn’t quite sure how to answer at first. l was a ball of emotions. In one sense I was so excited. Owen was going to be off the breathing tube and I was finally going to be able to hold him and snuggle him. On the other hand I didn’t know what to expect. I wasn’t sure how he was going to be. I wasn’t sure how taking the tube out was going to go. How would feeding be with his stitches? I had so many questions in my head. I am not even exactly sure what answer I gave her, I just remember saying how I couldn’t wait to hold him. I was trying to enjoy the time with my sister but I kept looking at the clock on my phone. Every minute that passed that got us closer to 12, was one minute less I was kept from holding my son. Human need and interaction is such an interesting thing. You go all day holding your baby, to the point that you sigh with relief the second someone offers to hold them, yet when you can’t hold them, its all your mind thinks about. Well, I should say it was all my mind thought about. The need to feel his touch was overwhelming.

Finally it was time. It was time to go back up to his room. I remember being in the elevator from the cafeteria watching the floors change. I remember thinking how bad I wished my husband was there, but how thankful I was that I had my sister with me. I knew my husband was where he needed to be with our son Michael. You can’t have everything in life. That’s the hard part. Trying to have everything you want when you want it. It just doesn’t always happen that way. We arrived back at Owen’s room and he was so agitated. He hadn’t eaten and he was gaging on the tube. We waited for some time and finally I asked the nurse where everyone was for the extubation. She said that she would call and find out what the hold up was. I was trying to balance being a parent as well as being understanding of how hospitals run. I am very aware that things get pushed back and don’t always go according to schedule. That happens in my line of work everyday. At the same time, my child was laying there extremely agitated, with an airway that he was about to remove himself. The nurse came back and told us that it would probably be another half hour. I expressed to her that there is no way he would last that long and that he would either need some form of morphine rescue to calm him down, or he would need to be extubated. She agreed and gave him a morphine rescue. He quieted down and thankfully rested for a bit.

About a half hour later everyone arrived for the tube to be removed. At first they were a little concerned with how sleepy Owen was. This was a pure example of how I needed to advocate for my son. Immediately, I spoke up and said he was restless all day because he wanted the tube out. I told them he would be fine once it was removed and that he is just exhausted from fighting the tube. They seemed hesitant but they knew I would push the issue and remain adamant. They all agreed and got into position to remove the tube and support him with oxygen once it was out. I remember my sister grabbing my hand and asking if I was okay and if I was ready. As a  tear rolled down my cheek I squeezed her hand as we used to do as kids and said yes. With the team in place and my sister at my side, they started to un-tape the tube and went to cut the suture that was helping keep the tube in place. To their surprise, yet no shock to me, the suture was already ripped. Like I said, Owen is a fighter. They did a count. 1, 2, 3…….silence. There was silence for a few seconds. Then I heard the sweetest sound a mother could hear. A sound I was longing for for days. Owen was screaming and screaming. He was letting everyone know how agitated and annoyed he was. My freaking fighter! I will never forget when they placed him in my arms. I was sobbing. It was a good thing they had oxygen on him because I was squeezing him so hard. Feeling him in my arms for the first time in almost 5 days was euphoric. Life made sense again. Everything was worth it. In that moment, my son had accomplished a major hurdle, while at the same time making my heart completely overfill with joy. My son was taking breaths on his own, while I was trying to catch mine…

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