A Birth Story

Where do I start?  How can I put into words the events of the past 8 days?  Life-changing events that have already given me a new perspective on life.  Gut-wrenching events that have opened my heart and created a new capacity for love.  Soul-searching events that have shaken my faith but ultimately brought me closer to my family, friends & Creator.  I guess I'll start at the beginning...

September 15, 2011 - 9:00 p.m.
The contractions are getting stronger...and closer...and longer.  Ok, I thought, here we go again.  Grandma gets the call to come stay with Reagan & we are on our way to Research Medical Center.  Ben asks me if I'm ready.  Sure I am...been there, done that. 

September 15, 2011 - 11:00 p.m.
Ben & I are in the holding area.  I'm hooked up to the monitor & dilated to 3 centimeters.  The contractions are getting worse but still tolerable.  Baby's heartrate is a little low so I'm instructed to drink some juice & lay on my side.  No problem, I thought.  The nurse asks, "is it a boy or girl?"  It's a surprise, we say. 

September 16, 2011 - 1 a.m.
I'm now laying in the delivery room.  My OB suggests breaking my water to get things moving along.  I agree - let's get this show on the road.  Bad idea...bad, bad idea.  The next contraction was infinitely stronger.  Uh oh, I thought, this is really gonna hurt.

September 16, 2011 - 5:47 a.m.
It did hurt...a lot...but it's over.  It's a GIRL!!!  Baby Reese is here & she's perfect.  She's laying on my chest & crying.  I look at her with a pride that only a new parent can feel.  She's swaddled in blankets & passed around to dad & her grandparents.  Life is good.  The nursery nurse comes in to do her assessment & suddenly Reese is gone.  "She's a little cool.  I'm going to take her to the nursery to warm her up & you'll have her back soon."  Should I have known then?  I honestly didn't feel any sense of dread.  No warning sirens going off in my head.  To me, she's perfect & perfectly healthy.

Time starts to get a little fuzzy here.  I remember being taken to my post-partum room.  Physically I feel amazing, so much better than after Reagan's birth, but am starting to acknowledge the little tugging in my chest.  Where's my baby? Why is it taking so long?  In the meantime I look at all the usual paperwork & my heart swells when I fill out the birth certificate form.  We have another child!!  Our family is now four instead of three.  I am the luckiest girl in the world.

Then...BAM!!!  Time stops.  The room shrinks, sounds muffle, I'm having an out-of-body experience.  "Reese is having some difficulty with her oxygen levels and she's exhibiting some classic signs of Down Syndrome," the NICU nurse practitioner says. Classic signs?  Like what?  She starts listing them off:  floppy muscle tone, almond-shaped eyes, low set ears.  "I also hear a heart murmur so I've ordered a STAT echocardiogram."  My world is reeling.  I look at Ben & will never forget the pain in his face.  How is it possible for two people go from pure elation to terrifying grief in a split second?

I spend some time in denial.  They have to be wrong.  There must be some mistake.  They're just being overly cautious.  This denial did not last long.  The neonatologist walks into the room & verifies our fears.  "Reese's heart is enlarged & her lungs are full of fluid.  We're moving her to the NICU now & a pediatric cardiologist from Children's Mercy will be here soon to look at the results of the ECHO."  I ask the question.  "Yes, I think it is Trisomy 21," she says.

Let's back up a little.  We declined all prenatal screenings for chromosomal abnormalities.  I knew I was approaching the dreaded "advanced maternal age" label but both of us were adament the results wouldn't matter.  We would not terminate.  This was our baby & we would love him or her no matter what.  We had a little scare at our 20 week sonogram.  The tech thought she saw a heart defect (ventricular septal defect, to be exact) but said the baby was in a difficult position to get clear enough images to say for sure.  We had 2 more sonograms at 22 & 24 weeks & were told our baby's heart was fine.  No defect!  Phew, what a relief.

Back to reality...
Ben & I are finally taken to the NICU to see our baby girl.  What should I expect?  This is where being an ICU nurse is both a blessing & a curse.  I know all about the equipment & tubes & wires but I've never seen them attached to a person I love more than myself.  I've never been on the other side.  The nurse escorts us to her bed & my heart explodes.  Those cheeks, those lips, that hair...sheer perfection.  The tears finally come & they come with a vengeance.  Her heart may be fragile & she might have an extra chromosome but she is ours.  We love her with abandon & without prejudice.  Ok, I thought, here we go...

Fast forward to today.  Life goes on & life is good.  I'm sitting in the kitchen with a cup of coffee & staring at my beautiful baby girl.  Reese spent 6 days in the NICU where they monitored her vital signs & ability to feed.  I was allowed to stay at the hospital & watched her make noticable progress each day.  The pediatric cardiologist was amazing.  She sat down with us & explained Reese's heart defect...complete atrioventricular canal.  Complete atrioventricular canal.  Three little words that scare me beyond belief.  I will share a link that describes this defect in detail but to put it very simply, Reese has a hole in her heart & one valve where there should be two.  This will require surgery down the road.  Open heart surgery.  Three more little words that scare me beyond belief.  Again, this is where being an ICU nurse is a curse.  I take care of patients after open heart surgery all the time.  They do fine, they go home & it all seems very mundane.  But now you're talking about my kid & the fear outweighs my knowledge.  The cardiologist assured us the procedure is very common. "We did one today & one yesterday," she said. If all goes well she'll be in the hospital for about a week & then will go home with a healthy heart.  Most of the time these kiddos require no further surgery & will be as active as any other kid their age.  So, here's the plan.  We have to get her fat & strong before surgery, ideally when she's between 6-9 months of age.  She will likely be on some medication prior to surgery to ease the burden on her heart & allow it to pump more effectively.  It's a waiting game & I'm sure it will seem like a lifetime to us.

Part 2...
Reese has an extra 21st chromosome.  She has Down Syndrome & we're waiting on the results from a chromosomal study that tell us exactly what type.  I'm slowly becoming an expert on this condition & have been AMAZED at the support that is available in the KC area.  The Down Syndrome Guild of Kansas City has been wonderful.  They brought over a huge basket of goodies for Reese that also included tons of resources for Ben & me.  I'm inhaling this information & it has put my mind at ease.  We are not alone, we are not the first parents to be given this diagnosis & we will all be fine. 

I want to thank EVERYONE who has reached out to us over this past week.  I'm sorry I've failed to return numerous texts & emails but we appreciate all of the thoughts & prayers.  We are reminded that we have the best family & friends in the world.  We will be leaning on you as we set forth on this journey and hope that Reese's story will somehow positively impact each and every one of you.  I am amazed at how this little creature has already inspired me to be a better wife, a better mother to her sister & hopefully a better person in general.  God bless.

Suggested links:
http://www.kcdsg.org/
http://www.childrenshospital.org/az/Site521/mainpageS521P0.html