Thursday, May 31, 2012

10 Days In the Hole...




three days old and wide awake. She loved to hold hands...
Now that we have established an open dialogue with the doctors and staff and asserted ourselves as wannabe Alpha dogs, we have been told numerous, half scary-half terrifying things. Sophia may not live. She may live, but stay in the hospital for weeks on end. She may stay in the hospital for a few weeks and go home, but not fare well. There were so many possible outcomes. If Joe and I were the gambling kind, we would have stopped at that point because the odds were just not in our favor. We couldn’t be sure of anything save one detail: nothing was certain. There were no definite answers. We had confidence in the staff and their abilities to do their job. We trusted what they said, no matter how frightening it was. Strangely though, the more we learned, the less anxiety we felt. Now that we trusted we would be kept in the loop we were able to enjoy our time together with our daughter and family that much more because our brains were no longer in overdrive. There was another upside to our reclaimed take-charge attitude: we knew everything they did. We knew all her vitals, her schedule, her condition, her stats on EVERYTHING. We rounded with them together first thing in the morning, in the afternoon and in the evening. We were abreast to every detail they shared with each other and it was comforting and unsettling all at once. They respected us as her parents and made it a point to speak to us as actual people now. They even changed how they addressed us. Sophia was called by her name and no longer “the patient”. We were no longer “Mom” and “Dad” but Corinne and Joe. Sometimes, they used Mrs. Bobbie. Sometimes, Ms. Jackson. If they were nasty.

We were finally freed of the tethers our uncertainty had placed on us. We were able to center ourselves, and focus on the important issues at hand with clear heads. Like when we could finally feed her or pick her up. We didn’t have to wait too long. On the morning of the third day I came downstairs from my hideout bright and early. I was still very sore and a little slow going, but I had impressed the nurses enough with my kick ass/take names approach to moving around after a c-section, prompting them to harass me less about my lack of rest periods. Generally, women take a day or so to finally get out of bed and start moving around. I was up and at’em at around the 6 hour mark and out of my bed for hours at a time. I wanted to be with my family and our daughter and that was enough for me to suck it up and walk it off, literally.  Sophias vitals were good and steadily improving and it was decided moving her around wouldn’t be an issue anymore. We were finally going to be able to hold her. I almost wet my pants I was so freaking thrilled. Holding Sophia was something we never thought would be out of our reach at any point during our journey. Not once did we ever talk about the possibility of not being able to snuggle our new baby. So when we finally got the go ahead, we were so excited you couldn’t have removed the ridiculous shit eating grins off our faces with 60 grit sandpaper. It was so reassuring to know that they were confident she was doing well and it made our minds easier to hear that they liked what they saw. Despite her medical status, Sophia was a normal sized baby. She was an average birth weight and length, 7Lbs, 4oz. and 21 inches long. Actually, 2oz bigger than I was when I was born and an inch and a half longer. But in this part of the world where the babies are born prematurely or without prior knowledge of their condition, she is Bigfoot. A sasquatch amongst tiny sprites that you can barely see lost in their blankets tucked away in their seemingly humongous incubators. On this floor she is a sight to be seen. A regular crowd pleaser. “Come one, come all, see the baby born with CHD that looks completely normal!” There is an inordinate amount of nurses and doctors that come to “check” on her. Most are just there to get a peek of the pink-cheeked chubby phenom. “Move it along, looky-loos. Nothing to see here. Just a regular good old fashioned kid...” Sophia has made an impression on the PICU staff and it is a funny circumstance. To have a child everyone was so concerned for, to birth this baby that was almost certainly going to come out gasping for breath like a fish out of water and blue as the sea itself, only to have her be so bizarrely normal in appearance. We loved that they were as surprised and excited about her as we were.
Today we would be able to take her out of her bubble and get our arms around her.  We couldn’t wait. Joe and I had been talking about what it would feel like to hold our baby, long before she was even born. We used to lie in bed together and watch my belly dance as she practiced her Tae Bo in there, punching and kicking my vital organs trying to make room for herself. We would laugh and say that if this was any indication at how squirmy she will be when she is born, we had better invest in some Velcro gloves. She was always moving in there. Even when I was walking around, she never seemed to quite settle. We took it as a sign that she would be tough. She was not a lazy baby, curled up in there lounging around until it was time to show herself. No, she was going to come into the world with the fight of an army inside of her. Full of piss and vinegar and fire in her eyes and feisty as all hell. We were counting on it. And we weren’t wrong. That little jumping bean never lay still in her incubator. Every inch of her body would experience some movement, be it voluntary or not. Her arm would twitch and she would raise her hand like she needed to go to the bathroom. Her legs would come up to her chest and she would kick them straight out in an attempt to put a whole in her incubator wall, (big enough so she could slide out, I’ll bet). She would turn her head from side to side very, very slowly, like she was trying to get a better view of the room. A baby in perpetual motion.

She is tuned into so many machines, we weren’t quite sure how this whole thing was going to happen. Would we have to hold her like an antenna and move her around to make sure all her bells and whistles didn’t go off? Well…sort of. When the nurse came in to help us get her out of her little plastic container (All I could think was, when they open that thing, is it going to “burp” like
Our little burrito..
Tupperware?... I can be such a jerk sometimes...)and it took several minutes to get her situated. Poor Sophia, she looked like an octopus. She had so many wires coming from her body. It is hard to imagine she was comfortable, but she rarely complained. So far she had been a pretty pleasant baby. We sit next to each other in separate chairs and I look at Joe. He doesn’t even let me say a word before he tells me, “Go ahead babe. You hold her first.” I told you he was amazing.  She is ready and waiting for me to get comfortable. Sitting is not an easy thing to do when your abdomen has recently been subjected to a baby spelunking expedition. Shit was sore as hell. But I got as comfy as could be and got ready. She is brought over, swaddled in a blanket, all her wires coming out the bottom end, her head out the top. A little baby burrito with leashes.  The nurse hands her over and as I feel her weight in my arms, my heart flip flops. She is so beautiful. Our little Sophia. The room was so quiet as I got to inspect her up close and personal for the very first time. She is so sweet. So perfect. Initially, I was a little afraid that after not getting to hold her right away, that there would be a sort of detachment from her. Like I would hold her and there would be no emotion. That the coldness I had been putting out to cope with all of this would stand in the way. It didn’t. It felt so wonderful to have her there with us. For the first time in a what seemed like forever, I felt truly happy. In that moment, it was nice to feel something that wasn’t fear or anxiety. She moves her head around a little and sighs. She seems so content and I can’t get enough. I touch her face and she blinks her eyes open. Joe leans over and kisses her head and she looks up at the sky like she is trying to see him. I took that as sign she wanted to meet him and gave her to her father. He just looked at her. The smile on that mans face alone would have been enough to make that moment memorable, but the tear I see come down his cheek was what really did it. This big strong man, this pillar of strength who helped me stand up when I wanted to fall down, had a tear and a smile as he held his baby girl for the first time.  We just keep looking at each other and Sophia and smiling and giggling like little school girls. My mother takes our picture and we smile as big as our faces will let us. This, my friends, is the happiest moment of my life and I cannot put into words how much love was in our hearts. I can say this. For anyone who reads this that doesn’t believe in God or Heaven, know you cannot be right. I know now more than ever that God exists, because I was looking at a miracle alive and, right before my eyes. And I know now there is a Heaven because surely this is what it must be like.
Exhausted. But never have we been happier than this moment...
I was given the go ahead to finally try feeding Sophia that same morning. She would be taken off her IV supplement and would finally get a chance to fill her belly with actual food. How she got it was up to me. Do we go bottle all the way? or….did I want to breastfeed? Um…Not really. I had thought about it and its benefits. Not just the nutritional ones, either. The fact that it is free had definitely been part of the decision making process.  I have never been comfortable with the idea of nursing. I don’t know why people insist is it so “natural”. It isn’t. It is strange and bizarre and so totally fucking weird that a child would be sucking on my breast and it gave me the willies. But, for a kid like Sophia, it was more than just a benefit of less gas and good face time with the ol’ moms here.  
She needed all the help she could get. Asplynnia, (a condition associated with her CHD), is when a child is born without a spleen. An organ that most adults can live just fine without is beneficial to babies.  It helps the body by producing immune support. So if you are born without one like Sophia was, your body has to work that much harder fighting off infections and viruses. Not a huge deal if you are healthy. But for a kid like Sophia it made her more susceptible to illness and that could be life threatening. But breast milk would help with that, giving her all the vitamins and nutrients she would need to help her fight off germs. Not too mention the skin to skin contact would expose her to my germs (how lovely does that sound) and give her the chance to produce her own antibodies earlier on. So breast milk it was. Now, I don’t know how many of you out there have breast fed, but what the F is up with a breastpump. The asshole who invented this thing (surely it was a man. A woman would have made it way more booby friendly) should be dragged out into the street and beaten with it. It is like a medieval torture device. I pictured women being strung up and forced to talk by threat of The Pump, begging for death to end the agony.  It was the strangest thing I have ever encountered. A lactation specialist (and seriously, who chooses that job. Side note; I think they should change that title from Lactation Specialist to Booby Handler. Because my boobs were indeed, handled.) came in to help me adjust to using it and to show me how to ensure Sophia latched properly. Again, so not natural feeling. Maybe 1000 years ago, it was natural to every woman. But not today. Not for me. We have bottles for a reason. It is so people like me do not have to go through this experience. No sir, this business was just downright silly. They help me get Sophia in a comfortable enough position and help her attach. W-E-I-R-D. I was warned that she may not be able to nurse as well as a typical baby. Getting the milk to “let down” after a baby first begins nurse is a time consuming matter. Once they have finally gotten it to the nipple, then they can begin to actually eat. The amount of effort it takes for that to happen can be too much for a kid like Sophia, whose oxygen levels are compromised. It will make her as tired as if she had just run a marathon and she will most likely fall asleep from exhaustion before she has a chance to actually be satisfied. SO. Enter-the dreaded Breast Pump. And I am now a Holstein cow.
catching flies on daddy..
Good Lord. What’s next, a feed bag?

As joyous and slightly hilarious as the third day was, day four lives on as one of the worst day of my life. All bad days I had ever encountered could not hold a candle to what this day was like. I had officially lost squatters rights at the hospital and would no longer be able to stay there. Insurance covered three days and the hospital had been kind enough to offer me a one day extension on my stay, even allowing me to keep my own room. I had been discharged from service, but despite this the nurses still asked me if I needed anything and were nice enough to get me some snacks and juice overnight. It was incredible, and I never had a chance to properly thank them for being so kind to me. Maybe they knew what I was about to go through and took a little pity on me as I am sure they have seen it a hundred times. We spent the day in Sophias room passing her around like a little football and marveling over how well she was doing. The day started off well enough and there wasn’t too much going on. Just more watching and waiting. But as the day wore on I started to get antsy. I knew what was coming and I was beginning to get a knot in my stomach. I tried to ignore it, but instead of going away it got bigger and bigger. I talked to Joe about what our approach was going to be when it came time. He promised he would call me if anything changed and first thing in the morning if I missed rounds. He said over and over again, “Don’t worry, babe. Don’t worry. You will be okay. It will all be okay.” Over and over and over. It was not working. I didn’t feel okay, I felt sick to my stomach with the worst nausea imaginable. And it continued as the night hours stretched on. 11pm. This was it. I was going to leave my child. I would have to leave my child where she was and go 35 miles away from her. There was no way around it. I could not stay there. Technically, both parents were not allowed to sleep in her room. The rules are one parent can stay overnight. they seemed like they would be willing to bend that one for us and they had the “accommodations” for two, but they were less than stellar for a gal in my condition. If it weren’t for the damned c-section.No, I had to go home. Joe refused to leave. Not in the selfish, “no you can’t stay because I want to” way, but in the “no, you need to go home and take care of yourself” way. In those moments I had a love/hate relationship with Joe. He was trying so hard to take care of me and at the same time, take care of Sophia. I can’t stress enough how much I love this man. He was trying to be whatever I needed him to at the time and no matter how much I told myself that he was right, I hated him for it and I think he knew it. It pained him to see me distressed, but he knew it was the right way to go. After much discussion with my mother and his father, he decided to be the one to drive me home. Between the three of them they decided it was time for me to take care of myself. How could they expect me to leave? They weren’t going to stand down on this one. They knew it was best and they stuck to their guns. They were taking over for the night. My father in law would stay at the hospital with Sophia and Joe would drive me home. My mother would be at the house to receive me and make sure that I slept and took care of myself and then take me back in the morning. It had been discussed, decided and settled. They were right, you know. I knew it then and I know it now. I had been there for 4 days straight, sleeping very little, ignoring orders to lie down and give my body its chance to heal before mommy duties came into play. Her stay at the hospital was a sort of blessing in disguise in that regard. The one and only time our irregular situation actually worked to my advantage in a way. She wasn’t home yet, so there was no late night feedings to worry about, no diaper changes no walking the halls to settle her down. I could go home and actually sleep. Yeah, right. Sleep. As if I was going to leave the hospital and go home and sleep soundly for a good 12 hours like the last four days had never happened. No fucking way. But it was a necessity. I had to be more diligent in my recovery and I wasn’t doing a good enough job at that point. I knew they were right. To try and sleep in the hospital room would have been stupid. Hardly anything had happened the last four days with Sophia, and the odds were that nothing was going to happen tonight either. I needed to separate myself from the situation for a night and pay attention to my needs. I knew they were right. I knew they were right and I hated them for it. Even if it was fleeting, I felt so angry towards them. But mostly….mostly I was just incredibly sad.

Joe and I pack my things and get ready to leave. For the first time since before she was born, my eyes begin to well, only this time, I cannot stop them. My heart felt like it was breaking. I was leaving the one place I truly wanted to be and the pain I felt was only magnified by the knowledge that Joe was not staying the night with me, but leaving me to go back to the hospital. I wouldn’t have Sophia and I wouldn’t have him, either. I had to leave my husband and my daughter and it was killing me. Even now just thinking about it makes my eyes water. I have never felt such despair and sadness in my entire life. It is a feeling I wouldn’t wish on my worst enemy. I kiss Sophias hand and say good bye and tears begin to roll down my cheeks. Big, fat, giant tears and I cannot stop them. I wipe them away only to have a hundred more take their place. We walk out to the car, Joe holding my hand but keeping quiet. I think he knew there was nothing he could say to make me feel better. We get into the car and begin to drive and suddenly I am overcome. I can fight no longer and I begin to cry. Heaving cries that shake my shoulders and force me into a slouch. I look out the window and up at the sky, willing the water works to cease and desist, but I am ignored and they press onward. They appear and throw themselves overboard and refuse to listen as I silently beg them to go away. “ Please stop crying Corinne. Please? Please stop.” I cannot. Joe reaches over and tries to take my hand. I pull away and I cannot look at him. I am embarrassed. I am ashamed of myself. How was it possible to hold myself together so well before and completely forget how to do it now? Where was my control? Gone. Packed its shit and gave me a big “sayonara sucka” as it ran out the door. The previous months build up coupled with the last four days were just too much a burden and the ability to hold back is gone for the time being. I sneak a look at Joe as he drives, praying he isn’t looking at me. He isn’t. He has his eyes stuck to the road, and they were brimming with tears.  He was also sad. Sad that his wife had to leave, knowing he would feel as I did if it were him. I reached over and grabbed his hand. My love for him grew even more in that moment. Because he wasn’t crying for me. He was crying WITH me. My sadness was his sadness, my heartbreak, his. When I tell people our story and they ask how we managed to get through it all, I always have the same answer. We were one person throughout. We felt angry together. We felt confused together. We felt love together. We felt everything… together. We had our less than fantastic moments, just like everyone else does, but we came through all of those the exact same way: Together. We were a unit from start to finish. It is the thing that made us stronger. We leaned on each other and we could not have functioned any other way. We were connected throughout all of this and it was the most amazing thing.  

We arrive at our house and I am a mess. I am exhausted in every single definition of the word. I want to close my eyes and pretend it isn’t happening, not think about anything, not talk to anyone. I want to go to sleep. My mother is there and she is ready to take over. She hugs me and tells me it will be alright. I love my mom. She knew I would be a mess and was ready for it. I tell you what. That mothers intuition shit is no joke. She knew that I had been forcing myself to be strong and she also knew that this was going to be the last straw. She held me and hugged me and told me she loved me and to not worry. Joe kisses me, and gets ready to leave, anxious to get back to the hospital. We knew we had left her in perfectly good hands, but it wasn’t the same as one of us being there. He had to leave and I understood why. We say our “I love you” and “good bye’s” and he is gone. My mother tries to console me and offer me food or some tea, anything to distract my mind for a moment. I am not hungry. I am not thirsty. I am so tired that I can barely stand up and for the moment, a little broken. The stress has gotten to me and I can hardly bear it.  My father in law had been sweet enough to bring my big recliner into the living room so I didn’t have to try and walk up the stairs to go to bed. I go to it, and my mother tells me to get in and go to sleep. The doctor had prescribed me some Percoset to help with pain management and I have not taken yet. I can honestly say that I really wasn’t in that much pain. I do not like taking drugs, of any kind. Loss of control bothers me (are we shocked by this admission yet?) and taking a pill would, in my mind, leave me in its grasp until it had worked itself through my system and I could never handle that idea. What if I had a bad reaction or something?  Except for the occasional Aleve or Tylenol, I do not take pills very much. I had been taking Tylenol at the hospital to take the edge off and it had been working just fine. But tonight, I didn’t care. I was already so out of my comfort zone dealing with the feelings that had taken over that I grabbed the pills and took one. Okay, I took a half of one. I have never taken them before and I was afraid of how it would affect me. I wanted to be able to wake easily as early as possible and get going and I was afraid it may make me too loopy. I took half and fell into a dreamless rest, half asleep, half awake, waiting impatiently for the sun to rise. The little sleep I did get definitely made me feel less horrible. Less tired than I had been and a little less distraught. I admit, it felt good to get some rest, but I was ready to go. When we arrive back at the hospital, Sophia is sleeping. She had yet another uneventful night and I missed nothing.  Joe gives me a hug and offers me his chair at her side so that I can sit with her. I feel better. I feel more at peace now that I am near her again. It is truly incredible to me how much this child had of my own heart already. I had only known her for four days and it was like we had been together a lifetime already. The day goes by too quickly and it is once again, time for me to go home. I have less of a difficult time going now, and I get home to rest so I can come back the next morning and do it all over again.

No more incubator for this kid! She's a big girl now!
 On the 7th day, things have changed. Sophia has been moved from her incubator to a regular crib. She has imporved so greatly, she no longer needed the additional heat and support the incubator provided. She has an echo done and normally those results are not given to us until the next time at rounds. Today was different. The doctor comes to see us within the hour to deliver news. “I am not entirely sure how to say this” and he pauses. Oh God. What it? Is she okay? What is going on?!! “It seems that Sophias physiology has had a dramatic change and part of her condition affecting the pulmonary valve (the part normally requiring the Norwood, the first of the three surgeries needed to aide her condition) is, well…it is..” He pauses again and kind of chuckles.. WHAT!!?? What is it? Good God in Heaven what the fuck is it, spit it out already!!!! “well…It is gone.” Wait. What the what? Gone? “What do you mean, gone?” “I mean just that. Gone. We were going to have to place a shunt into her pulmonary artery in order to help regulate blood flow to the lungs so they did not get oversaturated with blood and oxygen. The pulmonic stenosis (another part of her condition) seems to have actually done that for us. Her artery has closed some, therefore controlling the amount of blood flow and doing the job the shunt would have.”… okayyyyy… “So what are you saying here, exactly”, Joe asks as I sit with my mouth hanging open. What was this guy trying to tell us? That our kid was some sort of a scientific mystery?  As a matter of fact, she was. Sophias heart had in essence, healed itself. He could offer no concrete explanation for it. He hadn’t seen it happen before and frankly, seemed a little giddy over the whole thing. You could tell he was trying his damnedest to keep it under wraps, but he just kept shaking his head and smiling. “We can’t say for sure how it happened. Usually, the stenosis is a hindrance, not a help. It seems in this case, the exact opposite is true. Sometimes, things just happen and we cannot explain them fully. We will have to keep a close eye on her for another few days and see how this develops, but if she continues to improve at this rate, you may get to have her home soon.” Holy. Fucking. Shit. “Are you kidding me? Is this for real?” I asked.  “I am very serious. Your little girl is quite special. I wish I had a better explanation for you. We don’t know how or why it has happened, but it has happened. We will be back to check on her again later” And out he went, on to his next patient like the whole conversation didn’t just happen.
trying to explain what has just happened..

We couldn’t believe it. We were beside ourselves jumping (well, everyone else jumped, I rose slowly from my chair) and shouting “Holy shit!! Oh my God, this is nuts!” This kid is something else! Who the hell would have seen that one coming? Not anyone in this room. And apparently, not anyone on the hospital staff, either. This kid was going to show each and every one of us what it meant to take life by the horns and show it who is boss and she was only a week old. She had come out swinging and was knocking bitches down left and right. It was some of the best news we had ever heard and to say we were elated would be an understatement. We called everyone we knew, wrote emails and texts to tell everyone who knew us that Sophia was not going to be a normal kid in any sense of the word and we couldn’t be happier for it. She was going to prove theories wrong and show those doctors that no matter what years of training had told them, there are exceptions to every rule. She is a miracle. In every definition of the word, this kid is a miracle. She is a fighter and a survivor. She is Sophia Joan, Warrior Princess.

TOUGHEST 9 DAY OLD YOU WILL EVER MEET. SHE LOOKS SO HARDCORE.


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.



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Thursday, May 10, 2012

Induction, an epidural and a C-section, oh my!

                                  I was told that I wasn't going to be allowed to go past 40 weeks. A baby that will be born in potential distress shouldn't stay in the womb longer than 40 weeks to avoid possible complications. So we had to actually set a date for an induction. Now, again, here was something that was not in my life plan. I never had any intention of choosing my baby's birthday. I had grand visions of movie-inspired labor scenes, my water breaking with a great "sploosh!" on the sidewalk while shopping with my friends or waking at 2 am and gently rousing my husband with " Honey? I think it's time". Reality bitch slap. There was to be none of that. I was to schedule my induction for the last days of the 39th week to ensure that she would be born at exactly 40 weeks. I remember the phone call to the hospital being so unbelievably awkward for me. "Um, hi, yes I am calling to schedule the date and time of my daughters arrival. Could you help me pick a day that corresponds well with her astrological sign and a room with the proper fung shui for pre-selected childbirth? Oh, and can we have it catered?" It seemed so unnatural. I wanted her to come when she was ready, not when the doctors told her to. Not. My. Plan. Apparently, nobody cares about your "plan" when the welfare of a child is possibly at stake. How rude and thoughtless of them, right? I know!! Did they not know how important it was for me to have one grain, one granule of normalcy at least ONCE throughout my pregnancy? How much I needed to make the call about something, anything that was happening? They did not know. Or they did know and they cared not for whatever control issues I was wrestling with. They made it clear that I was not to disobey their orders under threat of extreme and cruel punishment. Okay, they didn't really say that, but they were pretty adamant about our getting on the ball with setting a day and time. After hemming and hawing for about a week, we opted for the predictable: 08/08/08. Why not? If she was going to be born on someone elses schedule the least we could do was offer her a cool date, right?
All these changes. The truth is, I am not one to resist change. I am slightly wary of it at times, but in general I embrace it. I like to go with the flow, see where it may take me. I pride myself on being part chameleon, on having the ability to absorb and blend and these people were really testing my patience and pushing me to my limits with their demands. It was beginning to wear me thin. Whatever. Let's just get the show on the road here, alright? We were ready to be parents to a special little girl who was going to change the course of our lives in so many ways. We were ready to tackle any turns, speed bumps, detours the road ahead had to offer. We had made our peace with and fully accepted our situation as a couple and individuals. We were handling our cards as they were dealt. Our preconceived notions of what having a baby meant were dead and buried.  Joe and I were ready to face everything looming ahead of us, eyes and hearts wide open. Thinking we were being pro-active we made a birth plan, which was by far the dumbest shit we had ever thought of. A plan? Clearly, we had never listened to a word anyone ever told us about the fast pace of change during child birth. We packed a bag to have at the ready in case she decided to make an earlier-than-scheduled appearance (we equipped it with things like an ipod and a crossword puzzle in case we "got bored". HA!) and intended on just sitting back and waiting out her impending arrival. As I write this I chuckle. Mainly at our lack of foresight. How is it possible for two people to be so monumentally naive?  Had we not learned our lesson these last nine months? From start to almost finish there wasn't a detail that went according to plan.

We can be so stupid..

We were told that even though we made the appointment for the induction, if the labor and delivery department were very busy, we may not get a call to come in until after the weekend, so just "stay close to home and if the phone rings, to answer it." Turns out, we didn't have to wait as long as we had thought. We got a phone call Friday, August 8 at nine in the morning. I actually did get to say "Honey, it's time" although not in quite the way I had hoped. "Really? Are you serious?" "YES! and they want to know how soon we can be there!" We were showered, dressed, packed and to the hospital in less than an hour. What can I say, we were pretty stoked. This was it. As far as we were concerned, we were going to get to the hospital, check in and *POOF* there would be a baby!
We really can be so stupid.
"Hello expectations? Are you there? Oh. This is their answering service?" ...It seems they packed a bag and went on vacation..about nine months ago or so. We didn't get the memo? oh well.
I was admitted at 10:30 in the morning, under the impression that she would be born that day. We were getting excited. I was larger than life and SO more than ready to get this little sucker out of my body and into the world. After an hour or two of IV drugs to get labor started, I lay there and watched the clock tick away. As time wore on, it was dawning on me that I was in fact, not, excited anymore. Apprehensive? Check. Tired? Check. Way too fat to feel comfortable anymore? Check. The details of what happened in those many hours from our admittance to our daughters birth are hazy ones for me. There are stories passed between relatives that were present about what actually happened, but I do not recall the majority of them.
 I had an entourage. My mother, father, younger brother and sister, husband and a few others were there for the duration. Yes, my entire local family was present and accounted for throughout the majority of my labor and delivery process. Personal space and privacy be damned. We had kept them so much in the loop during the epic climb up this varitable mountain, they weren't about to be excluded now that we had reached its apex and learn of the goings on secondhand. How anti-climactic THAT would have been. Listen, if they needed to see me bent over in the Downward Dog pushing like I had the worst case of constipation on record to feel more a "part" of it, that was their business. Not that either of us minded having them there. There is no other place they should have been. Even if all they did was goof off the whole time. Like when they were writing ridiculous things on the medical whiteboard in my room under "What to do today" and "Special Needs". Or how my brother wanted to get a pic of me bloated like a dead fish from IV fluids and with an oxygen mask on and put his smiling face front and center. Hey, more power to him, right? What a dick. Honestly, the picture is pretty fabulous. Almost makes me sad I don't remember it. Almost.
I remember the computer being set up so we could Skype my in-laws. Yes,we Skyped during my labor. I thought it was an awesome idea. As I said previously, we are 100 percent an open book about all of this and that started long before the day I gave birth. I was constantly keeping everyone informed as to what was going on. Emails, phone calls, texts, the whole shebang. I think partially because it was a way for us to air it out. The more we were able to have an open diologue about it, with our family and each other, the easier it was to deal with. The entire family on both sides was firmly planted behind us from the very beginning. They are a motley crue, sarcastic in the best possible way, fiercely loyal and protective. They love unconditionaly and are so caring, accepting....wonderful. They are all over the country, mainly east coast. It can be tough when you have a large family with whom you are very close, and they cannot be around physically to support you when you are going through something. But not with this group. They were all there for us then and they still are now. Every minute of every day. Joe and I both agree that we are strong individually but without our peeps, this experience surely would have taken its toll. We needed them and they were and are always there for us.
I remember being told that I should have an epidural. I was gung-ho about it before I even knew it was time. The contractions were starting and while not wildly painful yet, they were beginning to become uncomfortable. I remember being told to do it before they broke my water and not wanting to. I didn't want to be stuck in bed for a lengthy time before it was time to push.
Again, so so stupid.
What the fuck did I think I was going to do, get up and direct traffic or do my Jane Fonda workout or something in between contractions?  I was just so desperate for control. Everything was so far out of my grasp that I just wanted to grab a hold of something, anything and steer in the direction I wanted. It was reiterated that I should consider doing it sooner than later but still they agreed to wait until after my water broke to see how bad things got pain wise and we would go from there. Now, here is a piece of unsolicited advice to anyone having a baby anytime soon. GET. THE. FUCKING.  EPIDURAL. Especially when the medically trained individual telling you to do it says to. Don't wait. You aren''t going anywhere, so you might as well get it sooner than later and get some rest. Bag of waters is broken and my pain threshold with it. Holy contractions, Batman. They came instantly, in waves of two or three in a row. All very intense and way more painful than I care to remember. I can't be sure, but I think I grabbed the nurse by her hand and begged her to get the drugs or kill me whichever would rid me of the pain the fastest and STAT or I was going to lose my shit. You ladies who do it au naturale are either getting paid on the side, have a death wish or are punishing yourselves for something. Who would CHOOSE to be in pain???  This one time, I had a migraine and I thought I was going to die. I thought I could navigate through the pain by yoga breathing and sheer will power. I believe I lasted a full hour before I ran to the medicine cabinet for Aleve. If you go sans meds, I applaud your resolve but for me the equation was simple. Headache = aspirin. Forcing a tiny human being out of my netheregions = Epidural.
Once it was administered, it kicked in ASAP. I am as tall as a 6th grader (okay, a very short 6th grader) and weigh about the same so it didn't have very far to travel. My legs get warm and heavy. A strange and nerve wracking moment. As usual, the loss of control sends my mind into its crazy, random thought place. As my extremities begin to feel  dense I wonder if this is similar to what it may feel like to be buried alive. I know, I know, I know. A totally bizarre and kind of creepy thought. And yet, there it was.
It is quickly replaced with visions of unicorns and rainbows as the pain begins to subside. I feel warm, a little tingly. I begin to relax and it shows. My face gets less angry and I-am-going-to murder-someone looking, my body is less tense. The contractions have more regularity now because I am not fighting them. Fight them? Shit, I was so relaxed I could have passed a 15 pound bowling ball without batting an eye. It was lovely. (For reals. Just LOOK at how happy it made Gigantor over there...------>)
I get some oxygen. The baby's heart rate is slightly erratic. They maneuver me around and they check my dilation from time to time. My family laughs at me, surely because I look like an escaped mental patient. Crazy hair, droopy, drowsy eyelids, little bit o'drool.  I was pooped. I had been in go-mode since 10:30 am Friday and I was D-O-N-E.. It was the next afternoon already. There was little rest over night and into the next morning. We had hoped things would go faster, but it wasn't meant to be. Sadly, Friday the 8th of August was off the table. Figures. Why, oh why did I think I was going to get the date I chose? Oy....I close my eyes.
It is more than two hours later when I wake up. I am fully dilated and it is time to try pushing. This is it. The whole last 9 months were finally ending and our new life is about to begin. I freak out a little. Oh my god this is really happening. I am about to become a mom. Joe is about to become a dad. Our little girl is about to start fighting for her life.
Pushhhhhhhhh.... and relax... okay here comes another one. And breathe innnnnn and pushhhhhh...and relax. And on. And on. And on....
Three. Fucking. Hours. Later. ..Still pushing.
Her heart rate is good. She isn't in any real danger for the moment. But it seems like she isn't descending. What? How can this be? I have been mocked by the same sex and desired by the opposite for my lower body "curves" since I was 16. How can it be that my child cannot find her way down? So, we got another free anatomy lesson! Hooray! It matters not what your external structure looks like. It does not in any way give insight to what your internal structure is like. And my seemingly big girl "birthing hips" were just a well padded hiding place for a narrow pelvis. We really though it was going to be easy.  Breathe, push, push, breath, rinse and repeat, *ta dah!!* baby.

Now what? "  you can keep pushing, but if she doesn't make her way down we may have to perform a C section."  What the what? "Perform" a C section? Is it some kind of magic trick? (Turns out, it kind of is. They practically saw you in half and instead of a rabbit out of a hat, you get a small person out of your uterus!) We never discussed a C-section! What happens? What do they do to you in there? Will I be awake? Can Joe be there with me? My mom? What the hell is happening here? Ahhhhh..This announcement went so far beyond everything we had ever discussed together or with a doctor. We were being shown yet again we had no control over anything. It was really starting to piss us off. Okay, okay, we get it, someone else is driving, we are just along for the ride. But really? Can't I at least offer a shortcut or the tell you where to find the best roadside burrito stand? The wheel was once again being turned in a different direction by unseen hands and we were able to only sit in the backseat and try to stay calm...
The doctor comes in to tell us we can try pushing a bit longer, but we would have to decide which course to take, and quickly. She was trying to get out and my childlike bone structure wasn't interested in letting her pass. We had to make a clear decision about what we wanted to do in a limited amount of time. For the first time since the very beginning, we were given control over something. Neither of us knew what to do. For a brief moment, we froze. We had been looking for any opportunity to control something and when it finally came, neither of us could manage to think straight. Should we? Should we not? There is the life of a baby in the balance and there we were scratching our heads like a couple of cartoon monkeys trying to figure out how to open a banana.

We were about to make the call and opt to push a little bit more when the door opens. Mr-Big-Time-Doctor-Man walks in. Not the original doc in the blue scrubs. Noooo this was the head honcho in a fancy white coat and he was here to take me to the OR. Are you kidding? We thought we were being given a choice. How silly of us. Honestly, his timing couldn't have been better. We weren't winning any races with our thought process at the time. How could we? We were being thrown another loop. One that, again, we were completely unprepared for. So much for taking control when it was finally given to us. Believe it or not C-Section had never once been uttered in a single, solitary meeting of the minds the entire length of my pregnancy. But here it was. The very idea made my stomach turn. Here we go again. Things were changing and we had to suck it up and go with the flow. It was another 'defining"moment. We had to let all our fear and worry go. We had to trust this was the direction we were supposed to be heading. And we had to believe that everything was going to be alright.
Details are sketchy. I remember being wheeled to the OR, the glorious numbing of the epidural slowly waning. I was beginning to feel pressure. I felt like I needed to push. "NO! Do NOT push! Just hold on we are almost there.".. A double door...bright lights..it is really cold in here.... "Where is my husband? Where is he? Someone get him in here NOW or I am going to get of this table and walk out of here. Find him, now!"  "Relax sweetie, he is right here. He just had to get scrubs on." Thank God. "Joe, hold my hand please. Go anywhere and you die, do you hear me? I need you to be with me. Home team, okay? " He kisses my hand as they pull it away to place another IV, this one to numb me from the neck down, rendering anything lower than my head useless. I have no control and it is so frightening. I try to keep my cool. The cocktail of drugs makes my head fuzzy, my tongue dry. Joe is holding my hand, but I can't feel it. My arms are heavy. I can't feel them either. I tell them to move but they ignore me, the traitors. My chest, my legs. Everything is warm. My voice starts to fade in and out with my consciousness. I feel very sleepy. "Can I just close my eyes for a minute? I just need to close them for a minute. I am so, so tired."  "Yes, you can close our eyes if you want to! You can go to sleep if you feel like you need to. Who knew giving birth would be so  exhausting, right sweetie?" She giggles (alone) at her lame attempt of a joke. Wocka Wocka,Wocka. You're a real freaking comedian, lady. "Joe, can you see? When are they going to start? I am so tired, honey." My face is numb, and a tear I have no way to prevent escapes from the corner of my eye lid. I can't  really feel it slide down my face, but I know it is there. I want it gone. I haven't cried a minute since this whole thing started, and I was not going to start now. I don't want anyone to see. "Joe, wipe off my face, please? I feel so hot right now." Lie. I was freezing, but I was hoping he would think it was a drip of sweat... Breath Corinne. Breathe. Close your eyes and just try to relax. "When are they going to start, Joe?" "Babe, they already have." "Don't worry Mrs. Bobbie, everything is going fine, we are almost to her." It is the first time someone outside of my family has called me Mrs. Bobbie. As I have that crazy thought, I force my head to turn over. I need to see Joes face. He is looking at me, stroking my hair. He smiles and says, "almost! I can't see anything over the curtain, but I think we are getting closer!!" Thank God for him. As I open my mouth to tell him I love him, I feel the pressure in my abdomen change and with it, the look on Joes face. I hear a doctor say "It's a girl!" (thanks for the update, dude).  There is a commotion from the gaggle of nurses assisting in the room. I hear a strange sound. Like a squeaky toy, but louder...She is here.

Tuesday, May 1, 2012

Excuse me waiter? This isn't what we ordered...

        Everything is such a blur. There were so many doctor visits. So many. Between weekly Doppler monitoring sessions, frequent cardiology visits for echos and ultrasounds, and twice monthly ultrasounds at the perinatologist, I was in the doctors office more than I was out of it. I went to a lot of them by myself, which was never very much fun. I always felt a little more alone than I am comfortable with. I wanted to discuss the findings and conversations from each appointment with someone, anyone and immediately. I needed to talk it out as it was happening so I could deal with it all in "real time.". But, there were just so many damn appointments. It was nearly impossible for Joe to be at all of them because of his work schedule. I made do emailing all of my family and friends to tell them the news from the doctors latest fact finding mission. It was nice to let it out and I liked keeping everyone in the loop. Thankfully though, Joe was always there for the super duper important appointments. Like this happy little number called an Amniocentesis. Now that, my friends was NOT the highlight of my pregnancy.
 For anyone who doesn't know, an amnio is done mostly for genetic testing in high risk births or women over 40. Searching for chromosomal defects, they remove fluid from the amniotic sac and test it for Downs Syndrome, Platau Syndrome, Edwards Syndrome, Larry, Moe and Curly Syndrome.. Okay, I made that last one up, but you get the picture. They look for all sorts of disorders with other seemingly pleasant sounding names to help them better understand what we may face  after the birth of our child. Now, does anyone know how they get this little sample of fluid that contains all this valuable information? Wait for it..waaaaaiiit for itttt.. YES! They stick the worlds longest needle into your belly and directly into the amniotic sac all while being guided visually through an ultrasound.  Oh, you want me to go back to the part about the needle? Okay, well they numb a patch of skin on the belly and then proceed to insert a long thin needle in through the abdominal wall. It punctures the amniotic sac where they can then withdraw fluid to be tested. Then, they remove the needle and give you a Hello Kitty band-aid. Or Scooby Doo. Whichever you prefer. Isn't that nice of them?
Now, this is a very serious procedure. Please do not think my sarcasm indicates a lack of respect for the severity of the situation. It is simply the way I process. I cannot help myself but to giggle nervously at bad news and wrack my brain for something dry or witty to say in order to compensate for the lack of air in the room. But when someone explains to you that you are going to have a procedure where they pass sharp objects into the parts of your body currently housing a defenseless human being, the nerves can be almost too much to handle. So they explain the risks. "Fetal injury can happen. Preterm labor/birth, infection, miscarriage." These are all documented complications from Amniocentesis, followed by "when would I like to have the procedure done?" well... um. How does a quarter to fucking NEVER sound?  What a stupid question. "Are the benefits outweighing the risks?" "Well, we will be able to get a better handle on what we are dealing with. This defect could be a sign of a larger problem and we want to get the big picture. It will also give you the chance to do research.  If she has Downs Syndrome, it would be good to know so we can have the correct support ready at the hospital. If she has something like Spina Bifida or any other neural tubal defect, we need to start you with pediatric neurologists and other specialists. If she has horns and a tail, we need to contact an old priest and a young priest, etc..."So basically what you want is to be as prepared as possible?" "Yes." "Okay then lets do it." I was already 28 weeks along and a baby born that early does have a good chance at survival.  Oddly enough- and here is a real kicker-....that wasn't even my first concern.  At all. All I could think about is, "Was it going to hurt?" How unbelievably selfish, I know. But it was all I could manage. How much was it going to hurt?
I just didn't want it to be painful. Partially I think because if it was, then maybe that meant that it was painful for her too and partially because I was afraid. I was afraid for her life. Afraid that we would get answers we didn't want. Afraid any sense of pain from the procedure may make it too real. Another ridiculous thought, but again, there it was. I know it sounds weird to an outsider, but as strong as I was trying to be, this was a toughie. It just made it so damn real. If they were only taking pictures and listening to heartbeats and performing general exams, it was like this whole thing wasn't actually happening yet. I was beginning to wonder if the baby could hear my thoughts as I could and if she understood them somehow. Was I freaking her out? What if all this energy I was devoting to worry would somehow cause her to be an anxious child? (Again, totally random and stupid thought.. I have them all the time. For those who know me, not terribly shocking, I know). We decided it was time to bite the bullet, grow a set and look at this with less heart and more head. We were having this baby no matter how she came out, so it mattered not to us if she was to be born with any other issues. This was merely becoming a medically necessary test to prepare us for what may come. We had to check our emotions and look at it logically, clinically. We had to detach ourselves from the personal side of the experience and view it as a doctor would. Is this what was best for "the patient" overall. You bet your sweet ass it was. To know all of this now, would only make their job easier later and in turn make things easier on us. So that was it then. The appointment was set and we went on with our lives like the entire thing never happened.
Amnio Day. We arrive at the perinatologist office and are brought into an exam room. I lay on the table with my regular clothes on, no gown required, and stare at spot on the opposite wall. "What is that? A grease stain? Did someone have a food fight in here?" Inner dialogue is always so bizarre when you are under duress. Joe is with me, holding my hand and watching the staff bring in all its necessary accouterments. As I stare away I keep thinking, "Don't freak out. It never helps. Be calm. They know what they are doing." It isn't helping. I feel a little sick to my stomach and I squeeze Joes hand so tight he winces. "Just relax. You are doing the right thing." Oh. THERE it was. All this time I hadn't thought about whether or not this was the way to go. We weren't following the doctors advice blindly. We did our research, we knew the risks. But I never once felt any real doubt. Until right that very second. My eyes begin to burn and well up. I remember thinking, "No tears, damn it. Stop it. You are not going to cry right now. Joe needs you to be strong. The baby needs you to be strong. You need you to be strong. Don't let it get you. No. Fear". Swallowing, licking my lips, not making direct eye contact with anyone so they couldn't see me fight to control myself. It had to be and was going to be done and right now was the time to do it. End of story. I suck in a deep breath, let it out as slowly as possible, afraid to let it go that I may not get it back. I blink back a few rogue tears and say hello with a smile to my doctor when she walks in, reassuring her that I didn't need any further convincing that I was ready.  After all, I needed her to be 100 percent focused on the task at hand, not worrying about me. They are ready to start. Am I ready? Sure. Why not. Never been more ready for anything in my entire life. I try to watch. In my head, it seems like a good idea. A way to maybe control the situation in someway. I don't know...Offer directions if they get lost?  But at the last minute, I change my mind and I find that spot on the wall again and don't dare look away from it until they are finished.

It is done. After all that working myself up to get the nerve to go through with it, it is done. We have the test, no complications. A funny thing happened though. I had what my mother calls a "defining moment". It was when I finally realized and accepted this was all actually happening. Joe and I were going to have a baby. We were not getting married in the grand affair we were 6 months away from having when we found out I was pregnant. We were not going on a honeymoon to Hawaii. We were not going to bring our baby right home and start our new lives as a family in the way most others get to. We were going to have a little girl that was going to have to fight for her right to party from the minute she was born and for the rest of her life. She was going to need her mommy and daddy to be tough for her when things got heavy and as loving and accepting as possible. And we were going to do it. No doubts. No fear. No exceptions. We go back a few days later to get the results. Oh for the love of God, another damned conference room. I swear to you, my face begins to twitch every time I see a high-gloss, mahogany round table. Our results are negative. No other issues to worry about. Other than a bum ticker, this kid was fine.  We could now focus on one thing, and one thing only. Thank ya Jee-zus.
With the amnio out of the way we were free to move on. We took a tour of the PICU where the baby would go immediately following her birth. We were sat down by a random neonatologist and told what to expect during her stay. We were given a tour of the building and the entire childrens hospital. "Here is the family room where everyone can hang out while you are in labor".."and here is the cafeteria...the chapel....the gift shop".. Like we were on some college tour our senior year of high school.. " And on your left is the quad and the right the locker bays and over there is the grassy knoll where the stoners hang out and waste their parents hard earned tuition money...." It  just seemed so pointless and stupid. We don't give a rats ass where all this shit is. Just sit down and tell us what we need to know. Where will I be? Where will the doctors be? Where will the baby be? Pure and simple. "So, I see here you have a different last name. You two aren't married?"  No, Mr. Brilliant Doctor Man. What was your first clue? It was the different last names, wasn't it? "I need to tell you this. In the state of Arizona, if you are not married, and for some reason you are incapacitated and a medically necessary decision needs to be made on your behalf it falls in the lap of the medical staff. Not the father of the baby." wait. So you are saying if it comes down to ""Do we pull the plug on her" YOU assholes get to decide, not him? What the hell is THAT all about? Yeah right, like either one of us was going to let that shit go down. So that brings us to the another super duper important appointment Joe went to. Our wedding. Of sorts.
We went to the Justice of the Peace. Me, 7 months gigantic in a dress I paid too much for at a maternity store and Joe in khakis and a tie. Quite the dream scenario, I know. It made me  a little sad. The number one thing I had ever wanted to do in my life was become a mom. But number two was to have a big wedding with an even bigger reception and as each week passed that vision began to fade more and more and was being replaced by huge open-palmed slaps of reality. I had to get over it. I had already made peace with the fact that I was pregnant before marriage. Again, not my dream scenario. But I was okay with it now.I was just having a rough go at dealing with all this other stuff being handed to me. To us.
 It wasn't easy for him, either. He was looking forward to seeing me walk down the aisle and saying " I do" and celebrating with our family and friends and making a baby on our wedding night. Joe had to get over it. No rings. No " I now pronounce you man and wife" or band to play " Stand By Me" for our first dance. No delicious finger foods at cocktail hour or amazing sunset pictures on the beach with the wedding party. It was quickly starting to sink in that our life together was not going in the direction we had intended it to. Every time something changed, it felt like someone was trying to cheat us. Life was catching us at every damn turn. It never felt like it was good change.We were having an epic pity party for a while there. It felt like I was in a great restaurant and I ordered the most expensive caviar on the menu, but for some reason, they bring out Clams Casino. I keep trying to send it back because it is not up to my standards and not what I wanted. But they just send it right back to me, trying to convince me to eat it. I have this inner dialogue about it. "Have you tried the Clams Casino? No, I hate clams. Have you tried the Clams Casino, though? NO damn it! I just said I don't like clams! I wanted the caviar. Well, if you haven't tried the Clams Casino, then how do you know you don't like them? Well... I don't know, I just assume and that is fine with me. Just try them. You may find you love them. I doubt it. Well stop being so rigid. You can't control everything, you know. Try them and maybe you will like them. FINE! Shut the hell up already. Bring out the motherfucking Clams Casino and let me try them!"....Huh.. Not bad. I guess I DO like clams...who knew?....
I was beginning to accept that a change wasn't a sign of my lost control. It was a chance for me to try something new. A new way of thinking. A new perspective. It was time to get ahead of all this. Time to stop thinking about what we weren't getting and focus on what was being given to us. This special little baby was being given to US. To love and care for and teach and support. Time for the pity party to be OVER.  I had no idea then that this new frame of mind would set the tone for what was to come....

Friday, April 27, 2012

Did Anyone Catch the License Plate of that Truck?


How to start this story than from its true beginning would do anyone reading a disservice, as I tend to go on tangents and derail the original train of thought to the point of total and utter confusion. Okay.

Here we go.

I discovered I was unexpectedly pregnant one week after sending out the “save the dates” for our upcoming wedding.  Awesome, right? Yeah we thought so, too. Lol. There was some disappointment at first to learn that our plan was to be delayed, but we got over it and started to get excited about the idea of a child. We knew we wanted to start a family immediately after we were married, and this was really only a slight derivation from the original plan we had constructed for ourselves. No big deal. We were fine with it. We started thinking of how amazing it would be to have a little one around. I have always wanted to be a mom and looked forward to welcoming our new addition.

Our little friends condition was discovered at our 21 week appointment. We found ourselves at the mercy of an ultrasound tech who was kind enough to offer up the sex of the baby before asking if we even wanted to know. A sure sign that this would not be the visit we had hoped for. "Okay, so it's a little girl and she looks like she is growing well". Thanks a pant load, Chet. What a jerk. Before I had a chance to give her a piece of my mind for opening her big, fat mouth she began to twist it into a strange shape and squint her eyes at the monitor, slowly but obviously turning it away from us so we could no longer see the fuzzy image of what was apparently going to be our daughter. We knew from looking at her that there was something off, but were told everything was fine and to go home. As we made our way back to the car we joked about the events that just transpired. "Did you see her making those faces? What the fuck was up with her?" "I know, right? It looked like she was trying to hold in a fart or something. Maybe she was constipated?" We giggled and made more snarky comments as we got ready to leave. Looking back, I think it was our subconscious way of dealing with the fact both of us were thinking something could be up. The tech hadn’t said anything, but there was something unsettling about the first picture session of our baby. The whole experience just felt...weird. We were five minutes into our drive home when we received a call. Before I even looked at the phone to see who it was I knew it was the doctors office. I looked at my soon to be husband who had already pulled over, his eyes trained on me. I swallowed, telling myself, " knock it off you moron. Nothing is wrong or they would have told you about it then. You probably left your wallet there or forgot to sign something". Any kind of benign thought to quell my sudden rise of anxiety. In the 5 seconds it took me to answer the phone, I swear I thought of about 3700 reasons why they could be calling. " May I speak with Corinne, please?... How far away were we? Could we come right back? Yes, the doctor needs to speak with us as soon as possible".... I relayed the info to Joe and sighed. It was probably nothing too serious. Maybe they forgot to talk to us about labor or vitamins or something ridiculous like that. We giggled again but we drove back in silence. We both stared blankly in front of us, never once exchanging a glance. Truth is, I think neither of us wanted to show the other the fear behind our eyes.

We were ushered into a conference room immediately and told the doctor would be right with us. In 20 more minutes. Super. So we sat for what seemed like an eternity, making innocuous conversation, commenting on the posters of baby growth cycles in the room. " Look at that one, honey. Can you believe in a few months, there is going to be something the size of a meatloaf inside my body?" Insert your own version of my husbands obvious and horribly timed phallic joke. Again, another attempt to divert our attention away from the anxiety we were suddenly feeling (hey, I laughed). Knock on the door, doctor breezes into the room. Not my doctor. My doctor was a man. This was a woman and one I had never met. Introducing herself, she sat down and began to explain the sudden need to reroute our departure. "There was something on the ultrasound we need to discuss"(Deep breath. In. Out. Ready. Not ready. okay, ready...) "It appears there is a slight concern for the babys heart"(Ummmmm.. Okee Dokee. Still breathing, but palms are getting a little shweaty. Breathe.)"It looks as if the heart is not developing properly and you are going to need to see a specialist. The ultrasound is showing us what could be a heart defect." Stop breathing. Swallow. Breathe in.  There is suddenly a faint ringing sound in my ears. I tilt my face a little to the right, trying to let out whatever was beginning to block the information from entering. "You see, sometimes while the heart is developing it can experience a "hiccup" and.... "..That was kind of all I heard. After that it gets a little blurry. My ears were conscious of the sound coming from her mouth but they were no longer actual words. Picture the sound the grown ups from the Peanuts strip make. It was funny. Funny strange though, not funny ha-ha. I could hear my own heartbeat. My breath sounds. And that damn slight ringing, but nothing from her was registering. Not that it mattered what she was currently saying, I only heard what had already been said. "Babys heart is not developing properly" just ran on a repeating cycle  in my head. I saw lips moving, but only caught bits and pieces. " Congenital Heart disease...Can be life threatening..multiple surgeries..babys survival......." A tidal wave of words and phrases were starting to flood my brain and it was all I could do to not drown in them. None of it made sense. What do you mean? My ears wouldn't stop ringing. My hands were tingling.......I flexed my fingers out and back as I tried to take in what I was hearing. What did all of this mean? How was it possible? I am healthy. I don't do drugs. I exercise, eat well enough. Sure I drink and smoke, but not to the point of this? Oh my God, did I do this? I didn't know I was pregnant until nine weeks and did plenty of late night drinking sessions with the ol' hubster-in-training, that bad influence. I was assured this was almost definitely congenital and therefore was not something I was directly or indirectly responsible for.  Okay, so now what? “We will send you to a specialist who can answer all your questions for you”…Phew. Someone to answer our questions. What a load off, right? Ummmm..yeah....

Fast forward. We were referred to a Perinatologist. A doctor that specializes in high risk births.We were referred to a pediatric cardiologist for further testing and to hopefully gain more information about what she was going through in there to help us understand better out here. An ultrasound and echocardiogram and another conference room later and BAM. We were hit with it like a Mack truck at full speed, no breaks, and the driver passed out from too much oxy and booze. High Risk. High Risk. High Risk. Over and over and over again on a loop in my thoughts. High risk indeed. She was diagnosed with Hypo Plastic Left Heart Syndrome, a congenital heart defect that affects 4 out of every 10,000 births. Not to shabby with the stats there, right? I mean, 8% of all pediatric cardiology cases contain these symptoms. A sad, albeit strangely uplifting fact. Her condition wasn't unheard of so we didn't need to be overly fearful...right?. Yes, a fairly frequent diagnosis but the additional complications that occurred made her individual diagnosis slightly more rare than most with her condition. Whoops. Spoke too soon. Our little overachiever wouldn't stand for being one of the general pop. A veritable smorgasbord of defect related complications were thrown in the air. Malposed great arteries. Pulmonic Stenosis. Double outlet right ventricle. Malrotation of the duodenum and intestines. Asplynia. Is your head spinning yet? It was like some freakish late night infomercial. "You get the congenital heart defect - but wait! There's more!" Holy shitballs. What the hell where these people talking about? Want to know exactly? Here is the verbatim description from her medical records. Staple this shit to your forehead and memorize it:

"Heterotaxy syndrome with unbalanced atrioventricular septal defect with right ventricular dominance, double outlet right ventricle, and d-malposed great arteries and severe subvalvar and valvar pulmonary stenosis with dysplastic pulmonary valve and hypoplastic pulmonary valve annulus. Bilateral superior venae cavae, pulmonary venous drainage to the confluence posterior to the left atrium, single coronary artery arising from the right facing sinus".

Basically her heart is all jacked up. It doesn't look, function or sound like a normal heart.. Her left ventricle(normally the dominant chamber) is so small it is hardly noticible on an echo. It is now too weak to do much of anything and its diminished size and capacity leaves it no choice but to put the majority its workload on the shoulders of its more lazy brother, the right ventricle. Hypoplastic hearts cannot pump oxygenated blood out to the body the way they are supposed to. The now weaker, almost non existent left side puts all the work on the stronger right side causing the heart chambers and blood vessels to become larger and stretch more than normal. There are only two kinds of surgery to help with this issue. The first, a series of three seperate operations, can help alleviate the stress the heart is under. There is no way to "fix" this kind of heart. You can only help it out a little. Unless of course you opt for available surgery number two- a heart transplant.

What.The. Fuck. This was no joke. It was the real deal Holyfield of heart defects and it was the happy resident of my unborn childs chest cavity. It was there and it was not going to get better. There was no magic pill to swallow, no mystical potion to drink to change what was going on. Her internal development had hit one hell of a pothole. What a mess. Even her freaking appendix was in the wrong damn spot. A stupid, practically useless organ couldn't even do its job and get over to her right side.(Side note: Did anyone else think that it was supposed to be on the left? My mind immediately sifted through all the tv shows I had ever seen where a character gets appendicitis and what side they would hold while doubled over in imaginary pain. A totally moronic and completely random  thought at the time. But there it was).

A certifiable, Type A control freak, I had no choice but to become "that know-it-all mom" who had almost as much knowledge as the paid professionals. I couldn't control what was happening inside my body, but I'd be damned if I can't control what goes on out here. There is so much information out there and I devoured each and every bit I came across -the good, the bad, the really, really bad and the horrifying just so I could get my hands around the neck of this whole situation. I felt like my head was on a swivel going backwards and forwards between technical and medical jargon and the desperate need to figure it out in layman's terms. I wanted and needed to know every ounce. Every thing from treatment to what life would be like to how long a child with this condition could live. The terminology that was spewed in our general direction from 21 weeks prenatal until even this very day has been enough to drive a person to drink ....or want to attend medical school...but mostly, drink.

We were told that while she was in utero I was doing all the work for her, so her growth until birth would be watched like a hawk but overall we could expect no complications. While she continued to bake in my ever expanding midsection she would be fine and frigging dandy. Great. So why can't she just stay in there forever? Some peoples kids never leave the house. Mine will just never leave my uterus.

We were advised once she is born and has to begin processing oxygen on her own, things will decline. She will need to be cared for around the clock. Meds will be a part of her life for its duration however short or long it may be. She will have to undergo multiple surgeries, including the possiblity of a heart transplant. She could have developmental problems. These heart defects are usually associated with Downs Syndrome or other chromosomal disorders. Now stop for a minute and try to picture yourself 23 weeks pregnant with your first child, sitting in a room with a doctor you don't know in a place you don't want to be, discussing the life of your child in ways you would have never possibly imagined. Developmental delays? Downs Syndrome? Surgery and life long aftercare? What the hell happened to sex, pregnant, labor, birth, go home?

To be continued....