September 4th, 2012. I had these odd pains. They ran from front to back, were not consistent and were sort of dull. “This cannot be labor,” I told Bo as I paced the floor of my office. “This would feel different I’ve read.” Yeah… like those stupid websites actually tell you what it feels like. They do not in my opinion. Cut to that night…they got worse and I’d tense my body together to help them pass. Still I thought…not labor. Maybe digestion issues from ALL that Pinkberry. I took a photo and forced a smile. Remember this day.
September 5, 2012. By 12pm the next day it dawned on me for the first time in 24 hours. These are contractions. Call your husband. At least I was smart enough to “work from home” that morning. The doctor said I needed to just get checked out and see what’s what. Fast forward. Hours later I’m in the Au Bon Pain in the hospital lobby b/c the nurses said to eat something before the epidural and that I had time. And the pain went to about an 11 and i had to rest my hands on the wall by the bread and grunt breathe deeply. How many people did I scare?!
I was a week early, not 100% mentally prepared, but I was ready. The nursery was ready to have it’s accent color added but it was in order. (We waited on the sex so it was navy and waiting for orange-boy or pink-girl to be added). I had packed, bought everything any blog told me ever to buy for a baby. We’d taken the classes, read the books (okay I read the books). I had this perfect blonde haired, blue eyed baby in my mind who’d be so beautiful and this amazing lacrosse player and we’d do art projects and enjoy museums and picnics and… and… the list goes on. My mind had created exactly what this child looked like. This snapshot of idyllic childhood things.
But the pain came fast and like the mother Mary in the Bible, there was no room for me. Yep, been at the hospital for hours but when it came time for needing a room (so new york) and needing “the juice”… all the rooms were taken. So I labored on the front desk of the trauma area. I wanted her to watch if she wouldn’t give me a room. Watch me cry, pace, lean over with my hands on bo’s shoulders feeling like I was just going to die if someone didn’t give me the epidural.
When that finally came I was so ready. “I’m an athlete, I can do this,” I kept telling Bo. Which is hilarious b/c running has nothing to do with pushing out a baby. Anyhoo…. then it happened. The baby’s heart rate dropped. Suddenly and furiously the world tilted on its axis for the first time. It came back up, but then happened again. I knew something was amiss immediately. After the last time it happened, and I was at 10 cm… it was Emergency-get-the-hell-outta-the-way-scream-for-nurses-20 doctors later- chaos…C Section time. Thank God I knew that this entailed Bo not being able to join us. I knew that I’d have to find the strength and resolve to do this alone. Emergency C’s need to be sterile rooms and fast so no daddies. When I felt an incision, they had to knock me out. And knock me out they did.
I woke up from a dream where I was in a room with all of my New York girlfriends. They were around me in a circle telling me that I was having a girl. I remember Neely and Haley and Martha Anne’s faces. All of the sudden I was conscious but could not breathe. I felt like I was suffocating. I willed myself to put my hand to my mouth and nose and heard the nurse say “Give her oxygen!!” Finally I could open my eyes. Where am I? What happened? I’m cold. Where was my baby? I had wanted that moment of “IT’S A …..!” But instead, as I was wheeled down the hallway to c-section recovery, while holding my bucket for me to throw up in (so pretty), I heard someone ask “Do we have a name?” And I heard my darling husband say “Landon Glover Southard.” The girl name. I smiled. And held my pink bucket.
Bo came over to my bedside while a nurse held her and said. “There is something with her ears but it’s nothing to worry about. They took her to the nursery but she’ll be in soon for you to meet her.” I have some parts of this period that I do not remember. They are so fuzzy from the anesthesia and bits of strange information Bo or a nurse would say. Ears? What do you mean strange ears?
I don’t remember who, but someone brought her over, wrapped in a swaddling blanket and in a knit little hat and I knew. Something was wrong. Slanted eyes stared up at me. Tiny little ear lobes and not much more of an ear stared up at me. What is going on? I literally thought for a second “Who’s baby is this?”. For all of us mother’s who have experienced a shock like this, I think it’s important to admit what we truly thought. That way we can reflect that what happened next was magical and full of pure love. But that dark cloud existed. It sat by my bed for 6 days.
Finally getting up to a room and able to drink water felt like such a journey. I was exhausted. I hadn’t seen my daughter since that one minute of holding her and then she was whisked away. I was SO out of it so I didn’t think twice about where she was being taken and why. I was put in a shared room until a private room was available. I was given my epidural push pen (genius), percocet and then an ambien b/c I could not sleep. My brain I think knew what was coming and it was alert and ready to handle it. It was 5am so I sent Bo home. Get rest, something is happening with our daughter.
One by one they filed into my section of the room. And in NYC, this room is TINY. They introduced themselves- Genetics, Head NICU Nurse, regular nurse. My stomach flipped over and tied in knots. My world was about to be shattered and I’m on drugs and alone. Where is Bo? Where are his giant hands that I need to hold my face?
The geneticist cut right to the chase. “Your daughter has a rare syndrome we believe to be Treacher Collins.” “We need to move her to the NICU because we’re worried about several things and she can be closely monitored there.” I almost threw up. I was frozen. What did she just say? This isn’t happening. This isn’t fair. The entire pregnancy was perfect. My vision. My snapshot. Were perfect. I stared up at them and broke. I sobbed without any hesitation that they were all just standing there and I hadn’t even introduced myself. The nurse that was there for me grabbed my hands and pulled out her own cell phone. “Type in your husband’s number.” I did and poor, tired Bo, who had been told already and was waiting to tell me after I’d slept agreed to come back across town. I stared up at them and begged them to get me a private room. Begged for a room to be alone and to cry in. As if the angels heard, I was in that room in 10 minutes.
The NICU mother’s wing is eerily quiet. There isn’t a nursery attached to it for obvious reasons as the NICU is downstairs. The women are generally huddled in their rooms grieving or healing with loved ones. When Bo finally walked in my room it became real. This thing they’d told me was written all over his face. He’d been sobbing also. We sat and cried. We let it wash over us. We had no idea what to say to each other.
After an hour or so he left to nap. His dad was coming in town any minute and the poor dog needed a little love and probably to pee. I met my nurse that would will me back to walk, and realized my entire vision and life was going to change. The snapshot needed to be altered. My vision of my baby would need to include special needs. What were those needs? I had no idea. My version of what she looked like was confined to two one minute sessions when I was drugged up. I could not get out of bed though, and she was in an incubator. So I couldn’t see her. For 36 hours I didn’t see my newborn daughter. I was in so much pain, I could not walk from pressing my epidural pen too much. My God the pain.
It was time though I decided on Friday morning. Get out of the fucking bed. I had started to pump but I really wanted to nurse her. I hated the thought of this tiny little baby being fed by a stranger. She needed her mother. I needed her. I needed to stare at her and feel the love that all mother’s explain they feel instantly. I needed my moments back. I didn’t get the right after she was born moment. I didn’t get my “IT’S A GIRL” moment. I didn’t get the moments when family and friends come in and I’m holding her in bed and they oooooh and ahhhh over her.
I finally got in my wheelchair. I had put on my own clothes that I’d brought with me. I had my boppy. I was ready. Almost 2 days after having her, I met my daughter. I cried and cried. She was so small and slept, nestled up against me. The amazing thing to remember is how scared I was of her. This 6 lb baby baffled me. She had nodes all over her that monitored her every move and they’d constantly go off. How do I feed her? Change her diaper in the incubator? Forget it. The questions of “what is TCS”, “will her looks change”, “why is this happening to us?” I think of the intense love I have for her now and those days seem completely foreign to me. I’m ashamed to be honest about what I thought. She is THE cutest baby in my eyes but her differences made me so nervous that first night. I felt like a terrible person. A terrible mother.
I remember calling my mother the morning of her birth after I’d slept a couple hours. I couldn’t form words. She was on the train from DC coming up. Landon was born at 1am on the 6th so I told her to just come in the morning. She kept saying “what’s wrong?” “Tell me,” she said. I finally got the words out: “She has something called Treacher Collins.” I have seen or heard my mother cry about 5 times in my entire life. Her voice was caught in her throat and she said “We can do this.” “We can get through anything.” When she got there I didn’t want to let her go. She made me whole again, my mom. She made me feel like I could be a mother myself to this little tiny thing. I spent the next days going in and out of protective mother-mode to intense crying. When it was time for her to eat, I had to be there no matter who wheeled me down. I took one task at a time. With my amazing nurse’s help, I got my body upright and I walked again. Four feet to the bathroom but hey… I could stand up enough to shower. I put on makeup. I remember friends asking why I bothered and it was for some sort of control. I needed to look a little like myself again even though I cried all my makeup off every day.
I texted my four best friends from home and college and my two best friends from work. It was time for the world to find out. My inner circle. But they were sworn to secrecy. No one could know. I have no idea why. I think I needed information to feel confident. I was in pieces. Google was my enemy. I didn’t eat much. I just wanted pain medicine and really soft tissues. And my friends. The four of you that came to the hospital know the raw, real me. I laid it out there for y’all to see. You saved me from myself and helped me feel like me again. You brought flowers, magazines, snacks, books and what you don’t realize is that you brought me so much love. I could smile again. I could eat again. My friends reminded me who I was.
And then there’s Bo. This man who I thought I knew everything about. He amazed me. He spent almost 24 hours in the nicu with her when I couldn’t be there. He couldn’t leave her. He knew every nurse. He gave her any bottle that he could. He helped them bathe her. His love for her was so instant and SO BIG. His love for me was patient and kind. Just like the prayer that was read at our wedding four years ago. He made me feel okay about every single emotion I felt. God he’s amazing.
When it was finally time to go home, I felt like I’d been to war. I had battle scars. Nothing that used to matter mattered. And I was in SO MUCH PAIN. Research meant everything to me in those days. Breast feeding was so hard. I cried and cried. Any friend that came over, I just cried to them. I was a mess. Pediatrician appointments left me in a puddle. She wouldn’t gain weight. My love for her was so intense but I had no control. No control over protecting her from all the appointments with specialists. From her getting poked and prodded. Covered with nodes for tests. Weighed twice a week. No control over her latching.
And then, one day, it got easier. It was when she was about 6 weeks. As my body and the universe seemed to want it, I gave up breast feeding. She gained weight. I picked up my iPad and wrote down what she had. And then I published it on a blog. Whoa. It was out there. Since my blog feeds stories for me to Facebook… it was really out there. And the love I received was amazing. From all parts of my life there was warmth, stories, and virtual hugs. Hand written letters and gifts from people’s friend of a friend. These amazing souls that circled our lives showered us with comfort. Healing began and I started to realize we were going to be great. That perfect life existed. She really was cuter than I’d pictured in my head. She was my perfect bug. She held onto my long hair and grabbed my finger. She would stare into my soul when she looked at me. She was mine.
Since then, as I know you can tell if you’ve read the blog, I am madly, deeply and crazy in love with this child. She’s my life and center. She makes me better every day. I cannot imagine our story being any different. It’s made me who I am this minute, this day.