The day we discovered June's heart defect.

It was 10 days since I had given birth to my 3rd child.  My husband had started back at work after giving me a beautiful week to just rest and breastfeed while he took care of the older 2 children and the meals.  It was glorious.  

The day started like the last 10 had.  Breastfeeding a sweet baby.  Drinking in that amazing newborn smell.  Getting up earlier than I wanted to because she needed me.  As did the other two... rushing into our bedroom with boundless energy as they do every morning.  We laid in bed as long as we possibly could before getting up.  The baby in between us.  An almost 3 year old snuggled up into daddy and a 5 year old trying to give the baby as many kisses as she could manage while talking to her in a baby voice, “Oooooh June you’re soooooo cute!”  Matt and I working to shield the baby from any craziness from the rambunctious 2 year old “Jasper, let’s try to be gentle with the baby” as he picks up her arm and kisses it with gusto.   Oh 2 year olds....

Finally, it’s time to get up.  The day must begin.  I look at the clock and it’s not even 7am yet.  Groan....Yawn.....  Matt gets himself ready for work and I shuffle down to the main level, babe in arm.  I’d been upstairs for more than week now and it felt a bit odd coming into the main level of the room after being camped in the bedroom for so long.  I realize that many cultures women stay in bed MUCH longer than this... but I was proud of myself for not trying to do too much too soon and actually resting for those days.  

My doula friend Nicole was planning to come over and play with her children, but she texted me to let me know that her 2 year old seemed to be sick so she was going to have to cancel, but she was still going to bring me dinner.  With one arm holding a sweet newborn, I took to one handed picking up the house a bit while the older kids ate their breakfast.  How could I have forgotten what it was like to do everything that needed to be done with just one hand?  I checked facebook with one hand standing at the counter.  I turned on a pandora station and the kids and I had a dance party.  We were having a very good day!  June even let me set her down in her bouncy seat!!  I was so amazed that she’d let me set her down for periods of time, as she’d been pretty fussy (but not out of the range of normal) that first week.  I started to think that maybe I was going to be okay with taking care of 3 on my own while Matt was at work!  

I was so engorged!  I had been ever since my milk had come in and I figured it was because I had such an oversupply of milk, like I did with all my babies.  Definitely never a problem with producing enough!!  It seemed like June was more fussy than normal when I tried to breastfeed her.  I just kept trying, figuring that she was just mad because I had SO much milk and she was getting too much at once.  I knew that eventually my milk supply would even out so I didn’t worry about it.  She didn’t seem to cough or choke on it at all, but she did keep unlatching.  She had a strong latch though, so I wasn’t worried.  

Nicole came and dropped off a meal quickly.  We chatted briefly, as her children were out in the car with the car still running.... she smiled at sweet June, who was sitting in her bouncy chair.  I commented on how good the day was going.

I got a call from my mom.  She was going to stop by.  She got here just before Matt got home from work for the day.  I asked him if he could run to the bank before it closed to deposit some checks I’d been putting off depositing for so long because of having just given birth (I good excuse I’d say!).  While he was gone, mom was holding June and remarked that she was probably being stupid, but her color seemed a little off.  She turned on a light to see, as it was kind of dark in our house that day.  She let June fuss a bit.  She asked me if she had been crying at all and I told her that I always picked her up right away when she got fussy so of course she hadn’t been screaming that day.  My heart kind of sunk a little bit and I felt a bit worried.  My mom is not known to be a huge overreacter about health stuff, so I figured I should listen!  She asked me to find my stethoscope and I did and she listened to June’s heart and respirations.  Apparently she thought she was breathing a little fast and her color looked a bit off.  She seemed normal to me, but then I did notice that she was breathing a bit fast and not crying very much, more just making little fussy sounds instead.  I told her how she’d actually let me set her down today and I had been noticing her being different (not bad different, just different....).  “If I saw this baby at work I would ask someone to check her” she remarked.  As a seasoned labor and delivery nurse, she saw tiny babies all the time.   She kept apologizing for making me worry and I kept saying “No, it’s fine!”  Obviously it was fine, but I was still worried!!  Pit in my stomach.  Ughhhhh.  I quickly looked up our new doctor’s office phone number.  We had just been in days earlier to get June’s metabolic screen, but our doctor didn’t have any availability and we saw a different one.  I never have sick kids AND it was a new clinic.... who the heck do you call after hours anyway?!I didn’t know what to tell them the symptoms were, so my mom wrote me a list.  When they answered I gave her the phone instead as I figured she’d be better able to explain.  She annoyedly talked to the guy on the phone “No.... my baby is not excessively crying.” and again she’d list the symptoms including respiratory rate and other medical sounding things in a way I wouldn’t have been able to convey as effectively.  Finally the guy, obviously with no medical training, and my mom ended their conversation and she told me that someone would be calling me back.  She then called my grandfather, her dad, a retired medical doctor (ob/gyn perintologist to be exact) and told him the symptoms and asked her if she was being dumb/overreacting by having us go to the ER, as she had earlier suggested.  He said no, and also recommended that instead of going to the nearby hospital, that we just go straight to Children’s hospital.  

I am describing this all in great detail, but it really took not a whole lot of time.  Mom took the kids and Matt and I took June and headed out.  I quickly looked up the address to Children’s hospital on his phone as he started driving.  Of course the car was on empty, so we had to get gas.  I was nervous, even though I truly DID think that she probably would be fine.  So I told Matt to just fill up as much as we needed to get there, not to wait for the whole minivan tank to fill.  So we filled up some and left.  I was acting a bit worried and frantic and I think Matt was worried too because he took a wrong turn out of the gas station and got all turned around.  I think he told me to calm down at least half a dozen times on the trip there.  I can’t!  I’m so worried.  Ahhhh- traffic!  Ahhh- this car cut us off!  Ahhhh- you’re driving too fast/too slow/it’s too bumpy.  We were both a bit agitated and I was sitting in the back looking right at June and making sure she was fine the whole way there.  And finally, after rush hour traffic (of course, right?) we made it and drove straight to the appropriate parking lot so that we could walk right into the ER.  If you know us and our horrible directional sense (both of us... it’s a sick joke...), it’s a bloody miracle (yes, I’m British now.  Deal.) that we made it right there without wandering around downtown for a bit.  

We signed in and took our seat.  I got June out of her carseat.  She was pretty fussy and I was feeling.... I’m not sure what.  Surreal.  I stand a bounce and pat her butt.  “Shhhh Shhhhh SHHHHHH Shhhh Shhhhh SHHHHHH” repeated rhythmically with the butt pats.  We were probably overreacting but I was glad for going in ‘just in case.’  I was trying to go through the day in my mind and figure out if I had somehow missed something.  I didn’t think I had.  It was a normal day, she was just less fussy than normal.  I had chalked it up to her finally starting to get used to being ‘out in the world.’

“June McCoy?”  The nurse called our name and we walked into a little cubicle where they attached a pulse oximeter onto her tiny toe.  After what seemed like only a few seconds the nurse quickly detached her from her machine and walked us very briskly into another room.  I think she just said “follow me” and nothing more.  

Suddenly, we were in a very large and bright room.  June’s clothes were off and she was on a huge, adult sized hospital bed with people surrounding us.  A doctor introduced herself and asked me a lot of questions, none of which I remember anymore.  Oxygen mask on her.  Stickers attached to her chest, monitors being looked at, stats being read.  Doctor puts stethoscope to her chest.  “Heart Murmur.” she announces.   More questions.  Nurses and doctors talking to each other, trying to figure out what to do, orders given and carried out.  I am comforting my upset baby lying there while they poke and prod her.  “We are going to give your daughter *insert medication name* to try to *insert medical explanation*”  Okay.  They get an IV in and give her the med and it does nothing.  Stats drop.  That must not be the problem.  Why is nothing working, what is wrong with her heart!  She is screaming and I am holding the oxygen mask over her tiny little face, we try to put her pacifer inside the oxygen mask to try to get her to stop screaming.  She starts to turn blue as she is screaming.  A nurse tried dipping the pacifer in sugar water to try to make her suck on it and not just scream.  I’m not really into that idea, but obviously I want my baby to stop screaming so she won’t be blue and mayb her stats won’t be so low.... pulse ox is lower than I’ve ever imagined possible.  Her chest is rapidly rising and falling.  The sugar water doesn’t help.... she’s mad.  I’d be too.  I’m standing next to her shushing and trying to comfort her in any way I can without actually holding her.  Talking to her. Matt is texting my mom, his mom, people who should know.  Standing near me.  I glance at him and we both look so worried, so confused.  There are really no words to say to each other.  We’re on auto-pilot.  She is given various medications to try to help her out of her acute state.  An echo is done of her heart.  First we hear she has an ASD, hole in her atrium.  That’s not such a bad problem I hear, then we find out she has a VSD, hole between the ventricles.  They keep saying different things, not sure exactly what the problem is but it’s clear to me now that my baby is very very sick and something is wrong with her heart!  Is she going to die?  Ever be normal?  What does this mean?  These questions flash through my head but mostly I am numb.  Thoughtless, almost.  Texting as fast as my fingers will let me.  Not sure why I needed to do that.  The texting.  What it would accomplish.  It’s something to do in a situation where there is nothing I can do, perhaps.  We watch her stats.... so worried.  Matt says “Oh my gosh, that is so low, come on baby” or something to that extent.  We’re trying to talk to her trying to get her to get better somehow. We are both watching the monitor and looking at each other is disbelief as the numbers keep looking low and they keep trying to do things to get them up, unsuccessfully.  People surround her, we need to move away.  The cardiologist is looking at the echo, assessing the situatoin.  He is a pediatric cardiologist, Dr Gremmels.  He draws us a picture of a heart on a piece of paper.  We had already been made to back up.  I hear them say they are intubating her.  “Oh no!”  I think.  I’ve only ever seen one baby intubated and that had been hard and hard to get over.  I know just enough medical terminology and procedure names to know that this is not good at all.  My whole body feels strange.  A feeling I can not describe.  My jaw is clenched tightly and I am tapping one of my feet up and down on the floor.  He is still talking, still drawing.  I’m trying to pay attention to him while my baby is surrounded by tons of medical people in the same room.  I half succeed, knowing this information is important.  He explains that when her heart formed the walls “here” (as he is drawing) did not come all the way down or up.  Making one big (I cringe at the word big) hole that extends through the atrium and the ventricle.  He said that some call it two holes- but that it’s really just one big one.  Ugh, that word.  Big.  Nobody wants to hear it.  Big wad of cash?  Yes.  Big hole in the heart?  Not so much.  He also explains her valves.  She has one big one instead of 2 little ones.  How is the possible?  Is this genetic?  How did the ultrasound less than a week before birth miss this (In reality I find out later that this is only caught *maybe* 50% of the time prenatally. And I am grateful I did not know... but that's another story altogether)?  Is she going to need surgery?  Yes.  He says this is fixed with open heart surgery.  Blow to the chest.  My breath is tense.  Pastor Kerry walks into the large, bright room.  How does he know we’re here?  We’ve been here less than an hour.  10 minutes?  I have no concept of time.  It feels as if time is standing still.  He stands next to us.  I think maybe Matt gives him a hug (note: He was the senior pastor at the church Matt worked at for the past 5+ years and Matt had just recently started his roll at a new church).  Maybe words are exchanged, maybe not.  I can’t remember.  I’m still texting madly.  Everytime we are told something new. I can’t even remember which people I was texting.  My mom, one of the midwives from our birth, my mother in law.... I think that’s it?  

I look at my baby.  Cords everywhere.  Something breathing for her.  Ohmyword.  I can’t breathe and I feel numb.  Autopilot.  You’d think I’d sob hysterically.  You’d think I’d scream.  I do none of those things.  I stare at her.  Shock and disbelief.  Matt is the same.  We are like empty shells of people.  If he had cried I might have.  If I had cried he probably would have too.  But, we both just ARE.  That’s about the extent of it.  Shells.

We follow them as they wheel her down the hall and into an elevator.  Will we fit in the same one with all those meds, people, big bed with teeny tiny limp baby on it?.  We do.  Do I touch her?  Is she stable?  These things I can not remember.  Was I even allowed to touch her yet?  I am thinking no.  These are the details of the day I’ll never remember.  Shells of people have a hard time remembering.  She must’ve been somewhat stable if we’re wheeling her up, right?  I’m worried about the ventilator.  The only time I hear about ventilators is the “taking the off the ventilator’ as in letting them die.  I assume she is on life support.  My baby can’t breathe on her own.  I am so shocked, this is so unreal, I feel like I am in a nightmare.  I’m going to wake up and this is not going to be real.  I feel a little floaty... so maybe I really AM asleep.  

We are on the pediatric cardio floor.  She is laying on her bed, sedated on a ventilator.  We are ushered into the family waiting room down the hall.  She needs a central line put in and it is a sterile field.  We sit in the waiting room with Pastor Kerry.  Matt and he discuss theology.  Matt is trying to keep his mind off things.  If he talks about what is going on I think he would’ve lost it.  This is good.  He needs to talk, I need to be quiet.  I drink ice water from the water machine.  Go to the bathroom.  Ask a nurse if I can pump.  I realize now that it’d be quite a long time since I had nursed, and besides she hadn’t nursed well all day.  Matt and Kerry stay in the waiting room and I pump in the pumping room.  The nurse shows me what to do and tells me that they’ll order me my own pump so that I can pump in the room later on.  How long are we gong to be here?  My thought is a long time.  As I am pumping, I look at my texts, one of the midwives wants me to call and update, so I call her.  We talk about what is going on.  She reminds me that I need to make sure that I get ALL my questions answered.  If I don’t understand something, I need to ask.  As we are talking and I am pumping, I have to turn the pump off because I have completely filled both bottles.  I comment to the midwife, Jeanne, that I just filled the bottles completely!  She asks me if I have more there to use, but I figure that the engorgement is gone and they feel mostly empty so that’s probably enough pumping.  I want to know when they’ll be done with the *whatever they’re doing* (central line, I know now... then I just knew it was sterile).  I hang up with her and go check on things... they’re still working.  Matt is still discussing theological things.  Pastor Kerry prays for us.  I keep teary eyed during the prayer and kind of choked up.  But I don’t loose it.  We thank him.  Eventually he says goodbye after I think hours of just being with us in whatever way was needed.  How kind of him.  Seriously.  

Eventually after what seems like forever (definitely the longest part of the night so far!) we are allowed back into her room.  Oh, she looks so tiny on that huge bed.  So lifeless.  So horrible.  So many beeping sounds, monitors, heart waves and lines on screens, meds pumping through tubes into her.  Do we have any questions?  I ask about the ventilator.  So she can’t breathe at all and if we took her off it she would die?  I don’t know what I ask or what their answers are.  A female cardio doctor (who is apparently also on our team... so many doctors!) asks us if  we have ANY more questions to which Matt replied “Yes, do you know where we could get some food?”  “I think she meant about June,” I say.  It’s probably 2am by that point and we haven’t eaten dinner.  I don’t know what she says, but Matt orders Pizza Luce to be delivered.  He is hungry.  He tells me later “It’s not like you can’t ask the pastor where the bathroom is... she asked if I had any questions.”  Oh Matt.  But really, he was hungry and we were numb.  I get it.  You do what you gotta do.  I eat one bite of his pizza, but I can not eat.  Eventually Matt lays down on the couch.  It’s too small for both of us to fit and he is bigger so I tell him to take the couch and I will sleep in the rocking chair.  I comment that I am used to sleeping in weird places curled up in a ball... I’m a doula afterall.  Fitfully we eventually both fall asleep.  As a side-note, the couch actually pulls out into a bed.  We tried to pull it out, since I knew this to be the case in maternity wards, but we gave up and nobody seemed to offer to help us (they were busy with June, so it’s totally fine!!!) so I figured maybe it was different in this hospital on this floor so we slept how we slept.  Fitfully.

Thus ending the worst day of my entire life.  The days that followed were no picnic either.  I wanted to write a record of this day so that I could remember it.  No parent should ever have to see their child go through something like this.  I found it interesting that neither of us cried.  Not once.  The first time I cried was when she was off the ventilator, not sleeping and me not sleeping.  I had received what’s called a “prayer shawl” by some beautiful members of our new church, Elim, and I wrapped it around myself laid down, and just sobbed.  So unfair, so hard to see my baby going through this.  How is a baby going to have open heart surgery.  Please God, she can not die.  

Anyway, this is not the whole story, of course, just the story of this day.  This day of days.... this day that I don’t want to forget and also wish I didn’t have to remember.  We went from one of the best days, her birth.... her easy, joyous, amazing and beautiful birth   to this.  In less than 2 weeks.  Crazy.