One Year Later -- The 2 Percent Miracle -- Happy Birthday, Precious Son

If you had told me one year ago when I was anxiously pregnant, going to 4 doctor's appointments a week for ultrasounds and BPP's that we would be where we are today I would not have believed you.  From 12 weeks into the pregnancy with Joey we had been told that he would never survive.  That surely the hydrops (fluid around his body and organs) would take over.  If that didn't happen we were told that the septated cystic hygroma surrounding his head would eventually take over his entire body and consume him.  We were told he had a 2% chance of surviving the pregnancy.  We were told this at 12 weeks after undergoing a CVS (chorionic villus sampling) in which a long needle is inserted through the cervix and a tissue sample is taken to be tested.


Three days later, we learned from a phone call from a genetics counselor down at OSU that our baby was a boy and that he had an extra 21st chromosome.  Down syndrome.

We grieved hard.  Super hard.  Tears, anguish, sleepless nights. All over an extra chromosome.  We were told by a high risk doctor that termination would be advisable given the low chance of survival and all that Joey was facing.  I was told that terminating earlier rather than later would be better because if Joey passed away in utereo I would likely have to go through with a "delivery" of a stillborn because the pregnancy would never last past 20 weeks.  This weighed heavily on my mind for days and weeks.  I went to bed every night wondering whether or not he was still alive.  Instead of planning a nursery I thought about planning a funeral.  I wondered, "Do people have funerals for stillborn babies?"  I asked myself how anyone could possibly ever have the fortitude and strength to do such a thing.  I wondered how I would ever explain such an event to Tommy.  I thought surely I would die before this baby would.


I spoke to a friend who had gone through an abortion many, many years ago.  She told me that she thought of that baby every day of her life.  I will never forget that conversation and how it sealed what I already knew and believed in my heart-- that Joey deserved a chance to try and survive.  That whatever was going to happen to him was going to be God's choice-- not mine.


Another friend encouraged me and said, "You know what-- 2% is still a chance."  I was stuck in the grieving and the anger and this also turned things around for me.  She was so right--2% was still at least a chance and doesn't everyone deserve a chance?

I went throughout the pregnancy longing for a "normal" pregnancy.  Longing to be excited and not to have so much weighing on my mind.  Every day was a struggle, but I had a full-time job, a husband and a little 2-year-old who needed me to be Mom every single day.  I didn't have a choice other than to put on a brave face and pray for the best.

When we finally the 24th week of the pregnancy I felt more relief than ever.  No longer would "termination" even be an option for people to bring up anymore.  


Relief quickly turned to a new despair when we found out there was structural defect in Joey's heart.  For the remainder of the pregnancy we were followed by pediatric cardiology as we watched and waited to see what his heart was doing.


At 28 weeks we learned that I had gestational diabetes and that Joey had a new symptom.  He was diagnosed with "fetal ascites" as fluid was building up in his abdominal cavity.  Was this related to his heart?  Where there bowel issues?  We didn't know.  This is when the 3-4 doctor's appointments per week started.  There was also talk of delivering during this appointment and I went in to get the steroid shots to try and speed up the development of his lungs, but eventually one of our doctors decided to wait a little longer.


As the pregnancy went on I saw other people be pregnant and they looked so happy.  So carefree.  I would never wish this kind of stress on anyone, but I longed for that kind of joy and happiness.  I wanted "normal".   I've gotten comments this year to the effect of people saying, "Well, you probably won't have any more children because you wouldn't want to go through this again."  That took me by surprise and yet it didn't.  Is there a higher risk of us having another baby who has Down syndrome?  Yes.  Our statistics are 1 in 100.  We now have a 1% chance of having another child with Down syndrome.  I've already decided that if this is something we ever pursue and anyone ever asks if we are worried I will say, "No way! I'm worried this child won't have Down syndrome!"  And I mean it.  This is our new "normal".  I thought I wanted "normal" so badly, but we are living our normal. 

When we finally went into the hospital, one year ago on August 27, 2010 we were surrounded by family and loved ones who were at the ready no matter what happened on this fateful day.  We had the "luxury" of a prenatal diagnosis, so we never had the disillusion of a "perfect" baby.  Instead we had weeks and months to prepare for a baby we were told would never survive.  We had time to "accept " the diagnosis.  We had time to prepare.  For most of the pregnancy I resented the early ultrasounds and early definitive diagnosis.  I resented not being able to celebrate and enjoy being pregnant.  It took quite awhile to realize that this pregnancy was "not about me".  My dear friend, Brenda, who passed away not even a year ago from cancer, used to wear a shirt to our Wednesday night tennis that said, "It's all about me."  It was so irreverent and so funny because that is the opposite of Brenda's life.  Her life was spent apostelizing about God.  It was quite honestly-- never about Brenda.  Just like Joey's pregnancy and life-- it has never been about me-- it has always been about him.  Just like our amazing new friends Meagan and Matt (who just happen to have amazing twins Connner and Casey who have Down syndrome) say in their email signature "God doesn't give children with special needs to strong people; He gives children with special needs to ordinary, weak people and then gives them strength. Raising a child with Down syndrome doesn't TAKE a special family, it MAKES a special family...."

Joseph David wasn't able to breastfeed-- ever.  He still is on "thickened liquids".  When he was born he spent almost 5 days under the bilirubin lights and it was torture.  I wanted him in our room and with us.  We had worked so hard to get him here and now he was stuck for about 22 out of 24 hours a day under lights far, far away from our room. 

In the meantime, as hard as we grieved-- we celebrated.  I mean we celebrated hard.   To this day, I am pretty sure the maternity floor never knew what hit them!  


We had champagne, chocolates, gifts for all nurses and doctors and everyone in between.


If this baby was going to survive, I was bound and determined to celebrate and SHOW the world that Down syndrome did not mean a thing to this family.  Extra chromosome or not, this is how we roll!!!  We truly and sincerely wanted to set the "tone" for our family and how we wanted to exist.  Was Down syndrome a defining moment in our lives.  Yes.  Does it define us as a family or Joey as a human-- hell no!  


Young and old-- from across the country-- we celebrated.  Mr. 2% had finally arrived and despite the most dire of predictions and expectations, he spent only a brief time on Oxygen, he had no immediate surgeries and the jaundice and 5 days under lights were his only major issues for the time being.

After such an incredible year, we now have an amazing one year old son.  In just the short twelve months since he arrived via c-section at 37 weeks (keep in mind that Thomas Henry came at 42 weeks via c-section) so much has happened.


He was diagnosed with aspirating.  He was diagnosed with hypotonia.  He was congenital heart defects were confirmed and then on June 8th he had open heart surgery to repair them.  He has had plagiocephaly and torticollis.  He was diagnosed with Nystagmus.  He wore a helmet for three months.  He had 6 months of $5,000 RSV shots and then got RSV in month 6 1/2.  He has been to doctors appointments in 3 different states.  He has started sleeping through the night.  He has started saying his first words-- "Ba Ba".  He started sitting on his own.


He taught us what living is all about and what true love means.  He has not only brought us together as a family, but he has shown us what being a family truly means.


He has helped us to be grateful for every day.  He has shown us what being a parent means and he has taught us to be grateful.  He has been a fighter and a lover every single day of his life.


He has made us who we are.  


Please don't ever, ever be mistaken.  We are not special or extraordinary parents.  We are just people who were blessed beyond belief with having an extraordinary child.