Part Six

Writing part five was hard, and exposing to all of us. If you read it you know that we ended on a sour experience in the hospital. Here we were thousands of miles away from home and we were feeling hurt and that's something we didn't expect to happen. I hope that Dr. L has no idea any of the circumstances that we went through ever happened. I imagine that it's impossible to not feel a certain way about the situation without showing some sort of judgement in solidarity with the hospital or against it; that's a feeling I hope she never feels. Marley is her patient and at our core we believe in her extraordinary talents and the team she has around her despite the actions of anyone in that vicinity we will continue to be her biggest cheerleader wherever we all are. 

  

Part six. 

  

I think I sat down for maybe 30 minutes the whole night. Marley woke up every half hour or so and wanted me there with her. I couldn't hold her and fall asleep in the chair- she was too uncomfortable anyways. I stood there and shooshed her and held her hand. I internalized what had just happened. I went silent, vowing not to talk as to not let me words be held against me. I no longer felt like this was our room, but we were just guests here and I wondered if everyone who walked past and looked in judged me. I silently cried. I pondered if the staff outside felt relief that my husband had left- if the security guard felt better with the loose cannon gone. If they pitied me for his actions. Of course all this was unjustified, but stress, lack of sleep and nothing but time can sometimes produce irrational thoughts that go dark fast when not kept in check. I convinced myself that there was a permanent mark on our file and that it would always be there following Marley. I started to panic that Dr. L would no longer want to work with us... The amount of unfortunate crazy people out there have, for good reason, made us all cautious of what someone with no inhibitions could be capable of. But, my husband was not one of them. The thing is, you kicked my husband out. You could kick me out. You could take custody of Marley, and although I would fight tooth and nail through the proper channels to always be with my little girl, WE would never ever lose sight of why we are here. At the root of it all we fundamentally love people- even people who piss us off and we say we hate, we love. Because we are all human, and we all have stuff we shouldn't have to deal with. All of us. Faith, Hope, and Humanity. It's what we stand for. 

  

I was bone tired when Husband came in the next morning. I will readily admit that I hated him a little in that moment. He had slept (maybe?). He had showered. I was still drenched in sweat from our sauna room. She was quiet and sleeping. He was so loving. He had got up early and walked way far out of the way to get me a real Starbucks from blocks away. It was warm and sweet on my tongue. Whatever irrational emotions I had been feeling they washed away and I laid there beside him until the shift change. We had a new nurse. I saw a few of the ones we had had up to this point and I wondered if they were not back in our room because of last night. New people, meant no history. 

  

It was Sunday now and my husband would be leaving first thing in the morning. I still had no idea of when we would get to go home. I finally felt the dull ache of missing my world so far away. My amazing three kids who equally had to sacrifice their time away from us. My middle had basketball games and I was missing them. I texted words of encouragement and pictures. The team said they won for Marley. I went to the Ronald McDonald House and showered. I finally slept after that. Deep sleep of gratitude and relief. I sat alone in the room at the house and cried. I did a load of laundry. When I went back later that night I felt restored. I had tabled my frustration and sadness and embraced my family with a clearness. Husband stayed with us that night. We spooned together in only a too small bed will allow and slept. When I woke up the next morning he was gone and I felt a loneliness that is almost too hollow to describe.  

  

That day was silent. Marley finally woke up and wanted food. She was happy and played. She ate and sat with me. She slept on my chest, and a few hours later she belched and everything that she ate came rolling out with voracity all over me and her. I jumped up and held her out in front of me so she didn't puke on her arm. It was a lot of liquid. Her blankets were soaked. I was soaked.  

  

The nurse cleaned her up while she cried and I changed. I bagged my stuff up and picked her back up. She fell back asleep and we rocked until late that afternoon. When plastics came in for the later check up they said she was ready to move out of ICU and that we could go home hopefully tomorrow. When I asked if that meant the RMH they said no, home. I was honestly dumbfounded. I hesitantly asked if that meant we could book our return flight and they said yes, but wait until Thursday. I was so excited, but I also realized that my husband was currently on a flight home- a flight that had we known more would have waited and flown back together. With my pure joy in the moment came the realization that I would be flying back, with a baby that just had a 12 hour surgery not even a week ago, alone. 

  

Silence can be deafening. 

Later that night I was rocking her in the chair. She still had the IV and two drain tubes that were in her lower back to help pull out any extra fluid from her tissue expander sight. She had cords that monitored her vitals and a pulse oxygen cord wrapped around her big toe. She had stuff everywhere, so when we adjusted it took a few minutes to get it all situated. I reached down to get her drain tubes and I could only feel one. I couldn't bed around with her on my chest, but I knew it should be there. When the nurse came back in I asked if they saw it and it had fallen out and laid on the floor. I have always been a rule follower- when the doctor tells me what to do I do it now matter how tough it may be, but man did I feel like I had failed. I have no idea when it came out, but goodness that sucked. If she lost the other one Marley may potentially have had fluid build up there and need surgery to reduce it. I didn't take that lightly.

We finally switched floors and rooms. I still had my stroller from the first day that we came to the hospital and somehow I had almost all the stuff I packed for California with me. It was a lot. The new room was a single thank goodness, but it was the size of a closet. I didn't care. The bed was tucked away in the corner and folded up. I made the space my own while the staff had to bypass the hvac system lock to turn the heat up to 80 degrees. Marley ate dinner and slept. This time she was happy. I sat in the chair beside her. She was clearheaded and was aware of my ever presence in relation to her. She wanted to know I wasn't going to leave her side. The night passed faster than any of the others and by morning rounds we were cleared to go home that day. It was Tuesday. 

  

The day was slow, but uneventful with lots of snuggles. The cast crew came in around 4 or so and removed the beautiful purple hard cast with the big pink bow. They didn't unwrap her hand, just slipped it off and added a new one- another purple one, but alas, no bow. They cut down the sides so that it was able to be removed at home and wrapped it up with red and green tape. They left a large section open so we could see transplanted skin and change the yellow xeroform that laid against the stitches. They made a hard shell that laid over that opening so we could protect it when we traveled.  Marley didn't love being held down and positioned just so, but she did great. A few hours after that I packed up our stuff and we were ready to go. It was anticlimactic, but amazing.  

  

We walked out with a staff member. She was young, but had a story that she shared along the way about being born with a limb difference, but that she had surgery and now she was going to be a doctor too. I felt chills and the significance of that story. She was so kind. She walked us to the pharmacy and all the way to the door and wished us luck.... 

  

It was a cool night. The walk seemed miles away this time back to the house. She rode in the stroller and I carried our stuff. We went straight to our room and dropped off the bags and such. I pushed her back down to the kitchen and dinner had been made. The RMH is a glorious place filled with the most kind and generous people. They make dinner every night, sponsored by people and organizations. It is the most welcome sight. We both ate a lot and had a sweet treat. After that we went up to the room to relax. I had to time Marley's medications to keep her comfortable and keep the antibiotics on schedule. Alone I started to feel a little overwhelmed. Whenever I stepped out of her view she would get so upset. She didn't want me to leave her side. We tucked into bed and I snuggled her with her blankets and she threw them across the room. She yelled they "tink" stink. I didn't understand... Without her blankets she didn't have the same ability to comfort herself and that meant all she had was me. I had no idea I was about to be in for the one of the longest nights of my life.