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.



  1. I absolutely love reading your story.......

  2. Each installment leaves me wanting more! Such an amazing story...thanks for sharing it Corrine! <3

  3. Thanks for the tears! Next time I won't read your installments while sitting at McDonalds playland. Lol It was the part when you had to leave her. I had to leave Johnny in the nicu and I swear there is nothing harder in the world!

  4. Yet again, I am moved to tears and in awe of your strength and your resilience, and of course, of Sophia Joan's incredibly forceful will...... love you all so much XOX

  5. Wow! Just read this one today @ work & tears are flowing! Thanks alot for making me cry at work. LOL