I wish I could say that the days following Addy's arrival were much more uneventful than her delivery, but that would be a lie. I wish that I could say that my head and my heart had accepted Addy's limb difference, and that the constant stream of questions and worries had stopped, but that too would be a lie. I wish I could say that I handled the entire situation with grace and dignity, and was able to hold it all together, not only for my little girl, but for my family. But I can't.
The four days I spent in the hospital were without a doubt, the hardest days of my life. The entire experience was a dichotomy from start to finish: my heart exploded with love, and then exploded with worry fear seconds later. The birth of your child is a happy day, no matter what the circumstances. Whether the baby is born perfectly healthy, with a missing limb, or a devastating condition there is no cure for, it is still a happy day. If you are a parent who's child is born perfectly imperfect, you are now part of a club. A club you didn't even know existed until your child opened your eyes to a whole new world. And even though you feel as though you're the only parent to ever face such incredible heartbreak, there are other parents, around the world, that have fought the same fight you are fighting and lived to tell the tale.
So there I laid. In excruciating pain. Physically, mentally, emotionally exhausted. Unable to keep my emotions in check. The level of pain I was physically in was blinding. The pain medication delivery system did not lend itself to what I had just gone through. I was expected to remember to push a button to give myself a dose of the medicine every ten minutes between the nurses, doctors, and family members all checking on me, asking me if I needed anything, and wanting to discuss all the different scenarios surrounding Addy and her missing forearm and hand. My skin felt like it was crawling. I couldn't move, I couldn't escape, I couldn't breathe. The only thing I could do, was hold my sweet girl, and love her.
The one bright light in my stay at the hospital was my incredible nursing staff. My day shift nurses were great, always smiling, and always telling me how adorable Addy was. They were gentle when they poked and prodded, sympathetic to the circumstances I was in, and always there with a fresh glass of water. It was my night nurse, Jenny, that truly saved me.
My first night was awful. Miserable. Unbearable. Jenny came on shift, and was given the run down of my situation. "This is Tiffany and baby girl Adalynn. She was delivered this morning via c-section, and they were surprised when she was born without her right hand. Baby is doing great, mom is in pain." Surprised; understatement of the century. Once my day nurses said goodbye, promising to be back in the morning, Jenny stuck around to get to know us. I immediately liked her. She was bright and bubbly without me wanting to vomit. She fell in love with Addy almost as quickly as I had, and was not only worried about my physical well being, but my emotional well being as well. When I filled her in on all the days events, and how much pain I was in, she promised to have me feeling better in just a few hours once I was able to take pain pills instead of the ever frustrating button.
As the night went on, things settled down. My parents had wrangled Keegan and taken him home, deciding to wait to see how I was feeling the next day before bringing him back to visit. Once things were quiet, I had time with my thoughts. The conversations running through my head at the time were of worry, panic, and questions no one seemed to be able to answer. Was Addy going to need surgery? Was her arm an isolated anomaly or were there more health concerns? What was this called? Would she need a prosthetic? Would my husband be able to come home? I couldn't stop the questions. They kept coming. And I knew other people had questions as well. I had only been communicating with my family and my husband. Our friends had known that Addy was arriving that day, and we had only posted on our Facebook that she was here and that we were fine. I knew that we had to address her arm, but it was still so fresh I wasn't sure the best way to handle it.
I napped in twenty minute intervals, finally falling asleep for about an hour. I awoke in so much pain I thought I was going to die. I pressed the button alerting the nurse's station that I needed someone to come to my room. Jenny was coming through my door minutes later, asking what I needed. At that moment, I lost it. I could barely formulate words. I was in so much pain I was shaking. Jenny told me I needed to get up and get to the bathroom, that the pain I was feeling was the urge to urinate. I couldn't do it. I could not move. I was paralyzed with pain and fear: fear of the pain, and fear for the future of my daughter. I could no longer separate the physical pain I was in from the pain in my heart. "You can do this, I will help you get to the bathroom. We will do this together, a little at a time". She was a saint. She adjusted my bed to the upright position, and extended the bottom portion flat to make it easier to swing my legs over the edge. Just getting to the upright position was nauseatingly painful. I gently eased myself up, grabbing behind my knee to give myself some leverage, and then using my arms to help my legs. I held a pillow over my abdomen for some counter pressure, and tried not to imagine ripping open my incision. The moment my feet made contact with the floor, my entire body convulsed. I couldn't stand completely straight, so I shuffled like the hunchback of Notre Dame and slowly made my way to the bathroom with Jenny at my side. I was bleeding. Gravity was not only making me convulse in pain but was causing me to make a giant mess of myself. Just like with my first child, all sense of dignity went out the window the minute I stepped into the hospital to have Addy, but this was humiliating. Once I finally reached the toilet and lowered myself, the flood gates broke and I sobbed uncontrollably. It was the pain, the needing my husband there, the fact that this poor nurse was having to literally wipe me clean and change my bloody hospital bed sheets. It was the worrying about Addy, the unknown, what the future would hold for her, all the challenges she would face. I remember repeating over and over, "I need my husband, I want my husband". Jenny stayed there with me, wiping the dripping blood from my legs, rubbing my back, handing me tissues. She was the only one to see me completely fall apart. My family had seen me crying all day, my husband had heard me crying on the phone to him, but Jenny was there when weight of the day finally took over and I lost my mind. I knew that the moments we shared in the four days I was at the hospital would link us together forever, and to this day, we still keep in touch.
The highlights of the hospital stay go a little something like this.
Addy was seen by her pediatrician who was basically clueless. He had never seen a limb difference like Addy's and was unable to give us any information at all. He suggested that a geneticist come in and examine her, and possibly run some tests. We needed to know if there were any health concerns associated with her limb difference. He also suggested X-rays to be taken of Addy's arm and chest to see if that would reveal anything useful.
X-rays were taken, and the geneticist examined Addy. She drew blood for a chromosome test that would show any additions or deletions on Addy's DNA, which could give us more information about her arm. She also suggested an EKG of Addy's heart to rule out a heart condition that was commonly associated with right arm abnormalities. The geneticist strongly believed that Addy had a syndrome, Adam Oliver's syndrome, which would mean a certain heart condition. Every precaution was being taken to ensure that Addy was healthy. I needed that reassurance. I needed to know that my baby girl was healthy, that there were no there surprises waiting to be discovered now or down the road.
So, I waited. My mom came by every day, both to check on me and love on Addy. My dad and sister brought my little man back for visits, but only for a few hours at a time, a hospital just wasn't the best place for a crazy two year old. I slowly made contact with the outside world, texting my closest friends and breaking the news to them. My husbands cousin, Maranda, dropped everything and drove several hours to be by my side. Everyone was empathetic, as best they could be. No one had ever been where I was, and they knew that nothing they said or did would help. They all loved Addy, no questions asked, and for me, that was enough for right now.
The blood test results were going to take up to 30 days, but the EKG did not find any abnormalities with Addy's heart. The x-rays also seemed to be of little to no use, only showing that she indeed was missing her forearm and right hand. I was relieved that there was no heart condition. I knew in my own heart that Addy's was fine. I knew in my heart that Addy's arm was isolated. I knew that this would be her only physical challenge because she would face so many in her life, another physical challenge would be ridiculously unfair.
After four excruciatingly exhausting days in the hospital, we were going to be released. I was going to take my baby girl out of the safety of our hospital bubble, and out into the real world. The world where Addy would be exposed to prying eyes, questions, and challenges. I was terrified all over again.
