Monday, May 21, 2012

Practically perfect in every way..

More than 36 hours after this ridiculous circus of a birth began, she was finally here. She is still a girl (no in-utero sex changes) and we have decided to name her Sophia Joan. We both agreed in the beginning before we even found out the sex, that if this baby was to be a boy Joe would have naming privileges and if a girl, I was in charge. I am so glad I won. I chose “Sophia,” after the incomparable beauty, Sophia Loren and my all-time favorite feisty little lady, Sophia Petrillo (from the Golden Girls!). A one-two punch of beauty and strength. “Joan” was after my recently deceased grandmother, another strong and beautiful woman. She was and is rivaled only by my own mother as the woman I admire most in my life. Thankfully, Joe totally agreed with my choices. I wanted her name to be a reflection of the beauty, strength, tenacity and courage I knew she was going to be born with and to us, these two names said that and more.  

Sophia was so pink, the doctor and nurses were beside themselves. "Look at how pink she is! Are we sure she is a cardiac baby? Check her chart again. I have never seen such a pink newborn with CHD (congenital heart disease)!" It was instantly reassuring. I heard her squeaking out cries. "Awwww, don't cry my sweetie, it's okay! Don't cry!" Actually, that is exactly what they want her to do. I was told her crying is a GOOD thing. "OH okay! Keep crying sweetie! Keep crying!" What a dummy. Once she was out, they took a millisecond to show her to us and then she was whisked away. No holding, no touching, barely seeing. Where was she? They had her in her incubator and were examining her. The team of people standing around her were so closely knit together I couldn't see a thing from where I lay. They were talking so fast, arms were flying; tables were being stripped of their instruments. .. What were they doing and why hadn't they brought her to us yet? That fleeting moment I got to see her wasn't even remotely close to satisfying. I couldn’t even remember what she looked like from that brief moment I saw her face. I needed to see her. I NEEDED to see this child. I needed to count her ten fingers and toes, see her flush cheeks, her little face and head. I needed to look her in the eyes, to see her for myself. I needed to and they weren't letting me. They call Joe over to see her. He declines, telling them he wants to wait so he can really see her for the first time with his wife. He is truly an amazing man. Amidst the entire ruckus, he never once left my side. Not even to go see his daughter. Part of it was his loyalty, but I think it was a partial fear paralysis. He wanted to see her, but I think he was afraid of what he may see and really needed to do it as a team. We had done so much as a unit prior to her birth and her arrival didn’t change our desire to experience everything together. But I urged him to go over to her, touch her, see her face, and be by her side. He was so conflicted. You could tell not being with her was killing him and the idea of leaving me was just as bad. He went. I am so glad he went. The medical staff was talking to him and I couldn’t hear anything they were saying. Is she okay? What was going on over there? When could I see her, damn it? I am left to wonder what is happening and if she is alright.

They finally brought her over. We still couldn’t hold her. I wanted to so badly; the way normal moms get to when their babies are born. There were no cameras in this room. There would be no pictures of me looking half dead but smiling ear to ear with my newborn safely tucked into my arms. No pictures of her with her daddy rocking her and showing her off. A fact that still bothers me to this day. There are so many things I have been able to move past, but for some reason this one detail still kind of pisses me off. 
She was perfect.. She looked so "normal" that you couldn't have believed her life was in danger if the proof weren't right there in the chart. She had such chubby cheeks! Now, wait a minute. Where was this childs full head of hair that enduring months of almost debilitating heartburn promised me she would have? Sonofabitch old wives tales. When I was born I had a full head of thick black curls and uni-brow. I was a wildebeest for Gods sake. But not this kid. No, she was practically bald! She looked at me and for a second, it took my breath away. I couldn't help but smile. Big, beautiful brown eyes, a little wrinkle in her brow.  She looked so thoughtful, like she was trying to figure out what the hell just happened to her. She was again whisked away. Suddenly it was quieter, the air not as thick. Was she still in the room with me? No. She was gone, taken to the PICU and Joe with her. I felt tired and confused and completely alone in a room full of people.

When could I see her? I was told after I had finished in recovery and had time to rest in my own room that I would be allowed to come downstairs and be with her. I just had major surgery and needed to be watched myself. I begrudgingly consented. Why couldn't we be in the same room? I could recover just the same in her room as I could in my own, right? She needed to be watched, I got it. But, by whom? Who could watch her better than her own mother? I want to tell you that these were all internal thoughts. I never once said any of this to anyone. I was trying to be tough. Outwardly, I was as cool as a cucumber. I told them yes to whatever they needed me to. I agreed to let them take me to recovery. I talked to the nurses always using the right affect. I smiled and made little jokes. In my head, there was a category 5 tornado, and I was trying desperately not to lose my shit and freak out. It was truly awful and I couldn't bring myself to say a word of it. I had to be strong. I had to show everyone that I could handle what we were about to face and it was going to be difficult convincing them if I crumbled at every turn. To this day, I cannot figure out why I felt so compelled to present such an image of hardness. I think sometimes it was a sort of self preservation. The only way I could find strength to not break down was to convince everyone around me I was fine and dealing with it. I could have won an Oscar for my performance. Granted, not the healthiest way to cope with everything. I find the juxtaposition so interesting, in hindsight. I was so candid and open and truthful to everyone I talked with about Sophia and her journey, but I never gave myself the same consideration. I was never honest with myself about how I really felt. I would have a bad thought or feeling and my brain would hip-check it into a wall and render it benched for the time being. Looking back, I wish that I would have given myself the chance to experience all the things that I bottled up. I wish that I would have cried in the shower or yelled at the top of my lungs in the car or broken someone’s kneecaps…anything to let it go. I never did. I am inclined to believe that it still affects me to this day. I have a hard time demonstrating any emotion aside from happiness, love or anger. And general overall pissiness comes out fairly easily as well....Sadness, depression, fear, anxiety…. they get beat down and stuffed in the closet any time they even THINK about making an appearance. It isn’t that I was trying to appear differently than what I really felt to be deceitful.  It was more for my own benefit. To reassure myself that I was still in control of one thing and that was the way I reacted. And the majority of the time that worked. My biggest asset is my ability to keep my emotional side in check, but I also think it can be my biggest hinderance (Good Lord, I am a phsychologists wet dream aren't I?).. I wonder if I would have liked the ability to be unrestrained and emote more freely, for surely it would have been a liberating experience. But I digress. It isn’t in my character to give up and at the time, I felt like if I opened the flood gates and let everything loose, I would be doing just that- giving up. And I could get by just fine keeping it under the surface for the time being. I have since learned to be more open and frank about what is going on in my head - good, bad or indifferent - but to be honest, I don’t know that I will ever be able to fully express what is really going on behind the curtain….

 The nurses took me to recovery. I was so tired, so loopy (Is that what doing drugs feels like? Why the fuck would someone want to feel like that on purpose?) and all I wanted to do was close my eyes. I needed to be in there for at least an hour or two so they could watch my vitals. I remember the time felt like it was going backwards... Finally, Joe came to be with me for a little while because my family was with Sophia. My mother, father, brother and sister, they were all there and I told him I was so glad they were with her and I really was. But I was also jealous (something again, I never said out loud). They were all sitting with her and, as far as I knew at the time, holding her, feeding her, rocking her..soaking her in and I was not. Her own mother was not even there yet. I demanded information from him, to know what had happened in the eons that went by since we were separated. I missed her baptism. Due to our “special circumstances” my father got permission from our mutual church to perform it as soon as the doctors gave him clearance. He blessed her, said a prayer for her, anointed her with Holy Water…welcomed her to the world. I missed the doctors telling them what was going on, what they were looking for, how she was doing. Type A personality-control monster began to resurface and I was getting angry at not being a part of these things. I barked an order at the recovery nurse to find Sophias doctor and have him come in to explain everything to me as well. I can’t remember if he ever showed. It was so important I knew every detail and now, I cannot even tell you if it ever even happened. How incredibly stupid is that? I was in recovery for what felt like an eternity, eating ice chips, going in an out of a light sleep and bullshitting with the omnipresent staff. Talking about sports and the weather and a host of other benign subjects to pass the time, keep me awake and keep my mind distracted. Yeah, okay as if that was going to work. I smiled and laughed and nodded at all the appropriate spots. My mouth would move but my mind was in another place the entire time, waiting impatiently for the clock to finish ticking so I may see my child again.

Finally, I was free to go to my new room. Halle-fucking-lueah. I asked yet again when I could see our little girl and it wasn’t going to happen until much later. Or so I thought. Somehow, somewhere someone realized that I was having an issue dealing with my sudden onset of separation anxiety. Or maybe they were feeling sorry for us. Or maybe they were just really, really good people because something truly wonderful happened. They wheeled me through a hallway to go upstairs, but it was taking longer than I expected. Nobody said a word, but they were all exchanging knowing glances. They were up to something and I began to get a little nervous. Joe was with me, so I knew it wouldn't be anything too bad or he would have said so. I was about to ask what was going on when I was told we were taking a detour, but it would have to be fast.
 Against protocol and hospital rules, we were taken into a room that wasn’t mine. This room had an incubator in it and it was occupied. There she was. There were a few random people in the room and I paid no attention to anyone or anything except her. They brought me to her side and I was finally allowed to see her. I looked at her. I smiled and giggled in disbelief. She was here. She had made it out and was fighting like a champ. They could not believe how great she was doing. Being born with her particular set of conditions, it was not expected for her to be so (for lack of a better word) healthy. I reached over to touch her face. She was so warm, soft. Perfect. Absolute perfection. How was it possible this baby had been classified as "in distress”. She didn't look like she was in any distress at all. She looked just like any other newborn baby you would see with the only real sign of her "difference" being the wires attached to her body. I kind of expected her to look, I don't know...more sickly.
I was so caught up in the moment I didn’t even realize I had been told we must leave. Seriously? Already?  Didn't we just get here? How was it possible for the time to have moved so slowly before and so quickly now? Joe stands next to her on one side, and I lay in my bed on the other and we get our first picture as a family. Me in a hospital bed and her in an incubator. Not the ideal setting, but when I look at the picture now, it is obvious we couldn’t have cared less. I also notice what a hot freaking mess I was and I have to laugh.  I was so swollen. I had the baby already, and yet my stomach looks like it was housing a family of four in there.  And those aren't catchers mitts.. those are my hands. My fingers looked like little smokies attached to a frying pan. All the fluids they had pumped into my body were not doing kind things to me. Guess I did get a little bit of “normal” after all….
 It was time to go and I try not to cry. “Just hold on Corinne. Look at her. She is amazing. She is fine. Go and get rest so you can see her again soon” is what I said in my head, but it didn't make the pit in my stomach go away. I reached over and touched her hand. She grabbed my finger for a moment and I immediately noticed she had a good grip on her. She was so strong. I relaxed a little. I wish I could remember more. I was so doped up on a cocktail of pain meds and fluids that my brain was swimming. I remember feeling her hand wrapped around my finger. She let go and I was carted off, my finger was still warm from where her hand had wrapped around it. It was as if she was trying to comfort me, to tell me that she was okay and I could go now. I was trying so hard to be strong for her. She didn’t need it. She was already so much stronger than we knew.

 *A little off track here, but just so you understand a little why she was taken to the PICU and why they were not rushing to let me be with her, here is a recap: A child born with Hypo Plastic Left Heart Syndrome will be the lucky recipient of several surgeries. A set of three operations are the customary route cardiothoracic surgeons take to assist the heart of these kids. The first, the Norwood, is generally done as early as seven days and as late as 7 weeks (THAT late? I know right? geez..).  Sophias condition was exacerbated by several other anomalies and while her diagnosis was slightly different than most other cases, the doctors course of action was not. They intended on keeping her in the PICU until she was either ready for surgery or ready to go home and then we would bring her back for surgery at a later date. Naturally, we hoped for the latter and only time would tell if it was to be.  She was progressing very nicely, her vitals strong. This made them optimistic and therefore, they saw no need to “rush” me out of recovery to be with her.*
That and the fact that we had a 20 person entourage working in shifts throughout the day. Everyone worked together to make sure someone was always in the room with Sophia, especially when Joe or I could not be, and made themselves available to run errands, get lunch, send text/email updates to family and friends or to answer and/or ask questions when medical staff came in. We were like a small organized crime family. We had the Don to be the decision maker, the Capos running around giving the orders, the henchmen to carry them out. We even had a “bookkeeper” to track Sophias vitals, intake of food and number of diaper changes... The hospital staff loved us but I am sure they thought we were all complete lunatics. In a good way, of course.

I was taken upstairs and locked away in my tower until further notice. After about 5 hours or so (most of it I spent sleeping off my drug induced haze) I asked the on duty warden when I was going to be allowed out of my shackles. She said first thing in the morning I would be given a short parole and could go downstairs to see Sophia. Fan-fucking-tastic. So what was I supposed to do until then? Well, my options were to watch TV, sleep or read. Pass. I selected none of the above and instead ignored the nurses and grabbed the room phone and called my mother. That’s right. I told on them. She came upstairs and I got out of bed (Yes. 12 hours after major abdominal surgery, I hauled my lumpy ass out of bed) and into a wheel chair so that we could make the trip down.  What can I say? The desire to be with my child was so overwhelming. There was nothing, I repeat- nothing- that was going to prevent me from being near her for a moment longer.  So away we went. I find it funny, the memory I have of that instance. There I was still pretty numb, but only from the thighs down. My body was so swollen from fluids that my toes had all but disappeared into my feet and my cankles were so legendary, we STILL talk about them. (when you look at the pictures shown, know that before I went into have her, I looked like normal pregnant person, not the behemoth you see before you). My abdomen was so sore that I flinched with every movement. I felt every second of every twist and turn it took to get me out of my bed and into that damn chair and I didn’t give a shit. I remember the nurse shaking her head, admonishing me for being a bad patient and disobeying orders, but letting me go without much fight. She knew she wasn't going to stop me. My body, these nurses, the doctors.. None of them would keep me from my end goal: to see my little warrior princess, Sophia. In retrospect, it may not have been the best of ideas to force myself out of that comfy bed they set me up in. I think my mind was in full protection mode and had turned off all pain sensors. Or maybe it was an overdose of adrenaline. Either way, pain was hardly on my radar.  I say this because these days, I can hardly make it through a paper cut without falling to my knees begging God to make my finger fall off to make the pain stop. Who knew after all my body went through, I would turn into such a wuss…

My mother brought me down and wheeled me next to Sophias doorway. I remember feeling nervous. Can you believe that? Like this kid was going to see me and be disappointed or something. Like she was going to sit up, eyeball me and say, “Oh crap, YOU’RE my mother?” I got up out of my chair and slowly, deliberately shuffled into her room.. Our girl. She was in an incubator and was tethered by so many guide wires it made me think that my eyes were playing a trick on me and I was seeing double. No, there really was that many. There were sounds coming from the machines, but nothing from her. No, she lay there sleeping. Perfect. Just so perfect. She had such a serene face. You know, she didn’t really look as “girlish” as I thought she would. Actually, she kind of looked like a little old man. A perfect, gorgeous little wrinkled old man. Have you ever seen a little old man and thought to yourself, “Gee he is just perfect and beautiful?”(yet another totally random and crazy thought, but there it was.) I giggled at the idea. She was a sweet, little cherry cheeked angel with the face of a wrinkled old man. I wanted to hold her. I was not allowed. There were too many wires, IVs. I wanted to feed her, hold her, rock her. To do any of the normal things normal parents get to do for their normal newborns. Normal was not applicable to anything happening here. She was on an IV supplement to sustain her for the time being so, no feeding. She was being warmed by the infrared heat from the incubator so, no holding. She was being given medication via an IV to keep her “agreeable” during their marathon sessions of poking and prodding and was sleeping well so, no rocking. I know it all sounds so selfish, but I didn’t care. I had housed this little rugrat for nine months, been subjected to all sorts of testing and poking and prodding myself. I had been to about a gajillion doctor appointments, had at least 10 echos and towards the end, had to get NST’s (non stress tests - they sit you in a chair for about an hour and monitor the babys heart rate) done twice a week on top of working full time and trying to avoid overheating in the 100+ degree weather Arizona was so kind to bestow upon us in my ninth month.. I felt entitled to all the things I wanted post birth and I was receiving ZERO. I put in all this time and effort and to have nothing be the way I wanted was making me feel slighted.  Poor me, I know.

All I was allowed to do was to sit next to her with my husband and watch. So we did just that. We watched them do an Echo. We watched them change her diaper, check her IVs and take vitals every hour. We watched from our perch as they took her temp and blood pressure and refilled her bags of fluids. We watched. After a short time, it began to feel okay, for what it was. I thought to myself how lucky we were that she was even here and to stop wasting anymore time thinking about how I couldn’t do the customary “mom” things. I just wanted to be there for her and I didn’t need her in my lap to do that. Not too mention I was sure Joe was having just as difficult a time and I hadn’t been paying nearly enough attention to him. I asked him if he was okay and he said he would live, knowing exactly what I meant. He knew me so well. I didn’t even have to explain myself or the reasoning behind my question. So we watched some more. We would reach in and touch her hand, stroke her arm. Joe would lean over to kiss her. It was so special. Sometimes it felt like we were together in a little bubble. Nobody else in the room, just the three of us and there was just so much love.

 I was only supposed to go see her for an hour at a time. It was important that I not sit for too long as it could impede the healing process of my c-section. Not caring what they told me, I stayed for hours next to Joe, my mom and a host of other constant visitors. We all kept watch. Overnight, Joe stayed in her room while I was exiled to the next floor up. At 3 am he walked in quietly, thinking I was resting and trying not to disturb me. Silly man. “The jig is up Ninja Master” I told him. I knew he was there before the door even opened. He would have made a lousy secret assassin. The room was dark, but I had been wide awake most the night and his arrival only made it harder to sleep. He begged me to get some rest and I told him to shove it and made him give me details of whatever happened since I was forcibly removed from her room to lie down. We talked about how well she was doing and how amazed the doctors were at her level of progress. Now, you may think this sort of news would make a person happy. It didn’t. In fact, I think it made it a little worse. For her to be doing so well left us both feeling that the other shoe would drop at any time. We were filled with anxiety at the very idea that she was doing better than expected.  What a shitty way to feel. Why weren’t we more excited about this? This overwhelming feeling of dread was somehow surpassing our feelings of happiness and joy at the birth and progress of our little girl. How dare it do that? How dare our hearts once again make it past our heads in their race to see who had more control? We made a deal that night that neither of us would do this to ourselves anymore. We had done this before and it got us nowhere. This was a relapse. Stop the pity party (again) and wake up. We decided we would take everything any doctor or nurse told us for no more than its face value. We had to become clinical again, turn off the emotion. We had to get our heads back in the game and we had to do it now. It can be so hard to stay in that frame of mind while you are trying to fight back your emotion and remain clearheaded, but enough was enough already. No more waiting to see what they would tell us, no more allowing them to give us open ended answers to our never ending list of questions. We were going to get back to our old selves now and get some God damned control and there was nothing anyone was going to do or say that was going to derail us from that mindset. This was our ship now and we were at its helm  We had to stop being such selfish pricks and this would be the final time we  would feel sorry for ourselves. We had said it before and we had failed, but that didn’t matter. We were human and we had to forgive ourselves for letting the situation get the better of us. What mattered is that we kept trying. We just got back on that horse and tried again. We were geared up and ready to move on.  Fuck a woman scorned, Hell hath no fury like that of two overwrought, overwhelmed and under rested parents! The next morning, we gathered with the doctor and nurses at rounds and we insisted they include us in their rounding from that point on. Thankfully, not a single one of them argued. In fact they preferred it (Lucky for them or someone was going to get an ass-whoopin’). We were to be made privy to all information from then on. No more dancing around or beating around the bush. Hard, cold facts and straight answers...and damn did it feel goooooood. Like a cloud had been lifted and carried away. We no longer felt like we were walking a high wire and could come back down to solid ground. It was time to give all our focus and attention to that little miracle in there and we weren’t going to let her down.



  1. Once again Corinne, I am left with that awful "to be continued" feeling! Another wonderful installment. Can't wait for the next one!

  2. Thank you Caryn! I think I am going to make it a point to post every Monday. it takes me so long to remember everything and then get it into a story. Sometimes, just the editing takes hours, lol. There are so many things I leave out that I wish i could include. At least I know I will always have something to write about, lol! thanks again for all of your support. It means alot!!