Tuesday June 25th: 36 weeks pregnant.
I woke up that morning with a bad cough and a little fever. Of course the logical thing to do at that point is get on Web MD and figure out what is wrong with me, right? After a few minutes of research I had convinced myself that I had a pulmonary embolism and was most likely going to die. One thing you should know about me as I tend to be a hypochondriac. Web Md is not my friend, yet I just cant stay away.
I took my kids to there papas and went into work for a company meeting. Afterwards, I decided I needed to go into the ER just incase I really did have something serious going on. I started out in Labor and Delivery hooked up to a monitor. Baby's heart beat was a strong; 150. Yet it was not fluctuating. my machine looked like I was flat lining. A nurse came in and buzzed my stomach with a large vibrator looking thing. Baby C moved but not much. did it again for 2 seconds. again for 3. still nothing. Man this baby must be super tired!! At this point I went to the ER to make sure I was ok. didn't have a second thought about our baby, he or she was just sleeping.
When you complain of chest pain you get the royal treatment. I had drs in and out rushing me to do every test known to man. Started with an EKG: clear. Next, a chest x-ray: clear. Next an ultra sound (which I found out later was to check on the baby not me). And finally a VQ scan where I was strapped down with a gas mask and had to breath in radiation for 10 minutes.. that was fun.. not. : clear
"Great news, you do not have a PE, just a common cold. Bad news, baby's heart looks funny so were gonna send you back up to labor and delivery." This is when my world changed.
Back in L&D I was told not to worry, just getting some tests to make sure baby is ok. 10 minutes later I was told I was being transported via ambulance to the University of Utah hospital because the baby needed to be close to primary children's hospital where there were surgeons and neo natal experts on hand. What is going on? My baby is healthy! I'm the one that was sick, remember? Baby has never had an issue. He or she is perfect. Oh yea, did I mention that during all of this my husband was on a business trip in Boston. I was on my own. left in my room to deal with my thoughts and questioning what was going on with my baby.
Strapped onto a gurney in an ambulance with flashing lights. Rushing down the freeway; cars moving out of the way. a sea of red and blue around me. So many unconnected thoughts.. what is going on?!?!
Everything was fine..
it was fine.
I got to my room and met with a neo natal surgeon right away. I begged him to give me some answers. What was going on? I thought the heart was just a little big? Why is that bad? just more room to love, right? No one would answer my questions. over and over again I got well we need to do more tests first, then we can talk. at 4 am they finally told me to get some sleep and we would find out more in the morning. 6am the ultra sound tech was in my room wisking me away. She talked me through everything she was doing (if you have ever had a baby that is very uncommon, ultra sound techs never tell you anything) Brain looks great! fluid, awesome. 10 fingers, 10 toes. onto the heart. . silence. Whats going on? Is the baby's heart ok? Silence. God someone tell me what is going on! At that point she finally talked. she showed me the 4 chambers and told me they usually are all about the same size. My baby had one Giant chamber that was filling the whole chest. then 2 1/2 itty bitty ones that you could see if you looked really hard. Thy weren't like this at my 20 week apt. I remember looking at them. My baby was perfect.
Back to my room I go. Next plan was an echo then I supposedly was going to get some answers. Within 30 minutes of being back in my room I was being wheeled to primary childrens hospital. 30 minutes of another ultra sound focusing on the heart. This was a typical US tech. any questions I had I was told you can ask the dr those questions. I just take the pictures. Next thing I know the Chief neo natal cardiologist was in my room. As he introduced himself he was very bubbly, very talkative. As he started looking at my ultra sound however, he got very quiet. I asked what he thought and was told, we will go to another room where we can talk about whats going to happen.
This is bad huh?? This isn't just a heart that is gonna have extra love.. This news is not going to be good.
Over to the conference room we go. The dr. hands me a box of Kleenex. Shit, this is bad.. He pulls out a book of heart pictures. Tells me all about a healthy heart and how they function. next page is labeled "Ebsteins Anomaly". My eyes go straight to the second picture labeled Surgery to fix this condition. I let out a sigh of relief. Ok. Baby is sick, but there is a surgery that can fix it.. He or she is gonna be okay, right? Not so simple.
The Dr. showed showed us what a normal case of this anomaly looks like. the right atrium is englarged and the valve that normally closes off the atrium to trap the oxygen into the ventricle is not working. it is staying wide open so oxygen and blood are just circling back into the atrium. Everything got a little fuzzy at this point. my mind started racing of all the possibilities. how was I gonna tell my husband? how was I gonna tell my kids???
Then the Dr said, this is a normal anomaly. This is what your baby's looks like. He then proceeded to draw the right atrium twice the size of the already enlarged one.
My babys heart was broken. My heart was broken. So much information.. I'm on overload. I'm shutting down. I cant listen anymore. I want to go home. I want to go back to yesterday when my baby was perfect. please God let me go back. I called my husband and told him the news. He was at the airport trying to get home to be with me. He told me no I was wrong. He was looking this anomaly up. It said people can live normal lives, just a little more medically fragile. I was wrong.
My husband is 6'4 220 pounds, big guy. he is my rock. he is the strong one in our family, he holds us together. The phone goes silent. Did the call drop? no still connected. Babe, are you there? Babe?? I hear crying. Oh dear God if he is crying this really is serious. This is real.. this isn't watching someone else go through this, feeling sad for them but then holding my belly tight because this stuff doesn't happen to me. bad things happen to other people. This is happening. its not a dream. I cant do this.
The rest of the day was a blur. Friends and family coming to visit, dr after dr coming into my room all telling me the same thing. Things don't look good. lungs have no room to develop. Baby most likely will not be able to breathe and can not be on a ventilator if there are no lungs to ventilate. You need to prepare yourself. Baby is not going to make it.
How Can your life change so quickly in 24 hours. My world is upside down. How am I gonna do this?