Sunday, November 11, 2012
Big, deep, breath.
In late August of 2002, I came down with the flu.
It was a knock- you -down, stay in bed for days type of flu, and it was the first time I was really sick while having a baby in tow. Vanessa was only seven months old at the time, and Jeremy had to take a couple days off from work to take care of her while I was down. As soon as I was able, I zombied my way out of bed to care for my little one who was confused, and needful of her mama, whom she was so used to having by her side every wakeful minute. As some know, when mom gets sick, the house does too. It wasn't long after, that Vanessa showed signs of feeling under the weather.
We had been in town, a couple days after I started feeling better, and we were looking to buy a new couch for the living room. When I went to get her out of the car seat before we went into the store, I noticed the straps were very damp. She was very sweaty, too. She didn't feel feverish, but she was so damp. I instantly felt so bad, having thought I had over clothed her in the doggy August weather, but it really wasn't that hot out. After shopping, we ate a terrible meal at Applebees, and she seemed off, and I worried she may be coming down with my flu. For some reason, that particular day I deeply equate with Applebees, and never ever want to go there again. Not that any of this was Applebees fault, but the memory of her actually being in one of the restaurants makes it all so real. She still feels like a very sad fairytale to me.
The next day, Jeremy went to work, and as soon as she woke up, I knew something was wrong. She looked me straight into the eyes, and gave me pitiful fusses, which was unlike her, so I called the clinic as soon as it opened, and they couldn't get her in until 5:15 that evening. At first they said no, the day was full, but I begged and pleaded with them to see her that day, so they reluctantly made room for her. That was my mistake #1. My gut was rumbling, making it known that something was off. I couldn't put my finger on it, but I was very antsy, and scared, but didn't know of what. She seemed okay, just flu-ish, but the whole inside of me was roaring. Something was wrong. I had felt that something was wrong for many, many months, but all the doctors we saw gave her a clean bill of health. Their ignorant mistake may have very well cost her her life.
I should have listened to my gut and hopped a ferry that day, and taken her to urgent care, but I didn't. The stress filled me slowly throughout the day as I took care of her, and worried myself sick. I checked the clock every fifteen minutes willing 5:15 to magically appear. We got the mail from the mailbox. We ate a light lunch. She was attached to my side still giving me that pitiful look as I watched the sunny day slowly slide by at a snails pace.
I almost couldn't breath as I finally walked her into the clinic that afternoon. She seemed okay, fussy, breathing a little heavy, but okay. Me? not so much. I was a mess. I walked into the dimly lit waiting room since it was technically after hours, and nearly ran her down the hall when the doctor stuck his head out to see us.
I unhooked her from her car seat, placed her on the table giving a quick rundown of her symptoms, and looked him straight in the eyes, and said in a very firm, teary, voice.
"What is wrong with her. Tell me. Please."
He held his finger up to quiet me as he listened to her chest, and frowned.
"She has a murmur. A very loud one. Did you know about this?"
I was shocked, but also not surprised at all. My mommy intuition knew there was something wrong, and I told him, crying, how I knew there was something wrong, but no one would listen. When she was born, a nurse picked up a murmur, but the doctor wouldn't come in to listen to it, because it was in the middle of the night. He thought it could wait until morning. When he came in, finally, he cleared her. So did the second opinion we had listen to her chest. They all told me she was fine.
He shook his head as if to say, no, she was not fine, and checked her oxygen saturation which was low and giving erroneous values, so he put some oxygen on her, and started to actually look closely at her. Finally. Someone actually taking the time to look at her. At seven months, she was barely nine pounds. She was always on the cusp of being off the growth chart, but was making just enough progress to have them put that little dot on the grid. She was tiny, not sitting up yet, and so fragile. "You are small, so she is small", was the only response I got from previous doctors, that refused to hear my pleas and concerns.
He made observations. Her fingers, they were long, and looked almost clubbed. She was small. Too small. And her breathing, it was too fast.
"I will call ahead, but I think you should take her to the Swedish ER over in the city." he told me. "She needs to have this looked at as soon as possible."
So, after a frantic call to Jeremy, we headed off the Island and straight into hell. The ride to the hospital was so difficult as I prayed and sobbed and had so, so many questions. A murmur? Why did nobody hear it before? What does this mean? Why were her oxygen saturation's so low?
We breezed into the hospital getting admitted to the ER right away, and sat, watching the world fly around us that late August evening, until finally after a quick workup, the doctor informed us at midnight that she was going to be admitted.
"What is going on? What do you think is wrong? Please, please someone tell me?" I can't tell you how many times those words came out of my mouth that hospital stay. So, so many times.
"We won't know until we get an echo tomorrow, but, let's get you upstairs, and settled in."
So we took a long ride up to the pediatric floor, where the doctors expertly evaded our hammerings, until finally, at about one in the morning, we cornered a doctor, and in one fell swoop, he gave us the news that would change our lives forever in one short sentence.
"Your daughter has something wrong with her heart, and we think she may have a syndrome, possibly something called VCFS.
I blinked at him, bewildered. I knew the part about the heart was coming, but having a syndrome? what? VCFS? What is that? I had never heard of it. But my daughter was fine last week.
We went to bed that night in her room, exhausted, scared, and so emotionally drained. It was too bad that that night was considered mild, compared to the next sixteen nights.
The next morning dawned on hospital time, which meant beeping from machines, probes, tests, and questions, questions, always questions. Jeremy and I only had the clothes we had worn there, and nothing else. At the time, nothing else mattered, so it didn't really matter much. Family came, and wanted answers, but I had hardly any to give. The cardiologist came in, heart echoes were done, we were told to keep quiet, and stay out of the way. I learned quickly, it was the very best thing I could do for my daughter, so they could do their work, but the Bear inside roared, wanting to take a piece out of anyone who poked, prodded, or made her cry. It was excruciating to keep that emotion caged.
Vanessa held up well, but was getting sicker. The nurses seemed not to be worried, but I most certainly was. I was stressed to the point of having bouts of crying hysterically, trying to do it in private, but I wasn't having much luck. My mind was getting numb, and what in the world was this vcfs, and why won't anyone tell me anything about it??? When I asked, they would say "one thing at a time, and right now, her heart is what everyone needs to be focusing on.
On night number three, Jeremy decided to run home, list in hand, and grab as much clothes, supplies, as he could, and head back to the hospital. It was the first time I was alone since this nightmare began, and it was all I could do to keep myself propped up on the bed, and not become a puddle on the floor. I was sitting on the bed, watching the city lights birth out of the darkness, and I felt a hand gently cover my hand. It caught me by surprise, and I jerked my hand away, and looked, but no one was there. I'm not sure if you believe in that kind of stuff, but someone/thing was being of comfort, and that someone/thing wasn't there when I looked.
Not too long after that, I went to hold my baby. When I grabbed her little body, I could feel a crackling under my fingertips. A sticky, thick crackle. "Her lungs are wet", I told myself. My former respiratory therapist instincts were kicking in.
I paged a nurse, whom looked at me and said, no.
I let them know early on that I had been in the medical field, and please, share with me values, and stats, and numbers so I know what is going on with my baby. Please. Now, having worked in the medical field I remember dealing with the "know-it-all" patients, or family members. I was definitely not trying to be one, although they had perceived me as a threat. I was simply wanting to be included in her care. Let me know what is going on with my child. Mama Bear will always demand to be included.
Minutes after she blew me off, Vanessa started to have a very hard time breathing, and some foam was starting to make it's way out of her mouth. Oh my god, she is going into heart failure.
I screamed for the nurse, for anyone to hear me. That dang nurse sauntered in like it was no big deal, then her eyes got wide, and she starting hollering too, for hands to help her. A code button was pushed. I was pushed aside. People were running in, and Vanessa was gagging, and trying to cry, as they stuck a suction down her throat to suction the foamy liquid out of her lungs. Alarms were buzzing, and I couldn't feel my feet. I know I was praying audibly. Praying and begging for God not to take her. I was alone, and watching the most awful scene play out, and all I could do was beg. I have never felt so powerless in my life.
They finally stabilized her, and Jeremy arrived right at the tail end of it, to wrap his arms around me and watch, scared to death too. It was a flurry of activity as they started piling her stuff into the crib, and told us they were moving her right away to the PICU. I hurried too, grabbing this and that, but not before growling at the nurse "I TOLD you her lungs were wet!!!" I wanted to pound her, but having watched them call a code on my daughter, the fight had to be re-directed to keeping her alive.
I will try and finish this post next week. I may be able too, I may not, it may have to be a silent post. I have a lot of searching and strength to find in the coming weeks. Not sure if sharing is the right thing to do, but here I go. Jumping off that cliff, again.