Chapter One

From the very moment we found out we were expecting baby #5 our life got even crazier than normal.  One of my very first thoughts was, “Who has 5 kids these days!?”  The answer: us.  We are going to have five kids!  We need a new house!  My new car won’t fit two rear-facing carseats!  I am going to have two under two... again!  It took a few days of panic before I settled into the idea and started to get excited about adding another little person to our brood. 

Within a matter of weeks, before we even told anybody I was pregnant, we had bought a new house and began to get ours ready to sell.  The day after our house hit the market it sold, to the first lookers!  How lucky were we!?  Then came moving... right before Christmas... with four children.  Not our best idea.  But our hope was at least we would be settled into our new place long before baby arrives. 

We survived Christmas with our four crazy boys in our new house.  Maybe things would finally get a bit more routine.  Wrong.  Two days after Christmas we went in for my 20 week ultrasound, which is a full anatomy scan where they check the baby from head to toe.  I have done enough of those in the past to know that something wasn’t quite right.  The tech never said “everything looks great” and she kept looking back at his heart.  We went back to the waiting room until the doctor would call us back to go over everything and do my regular checkup.  I knew, in my gut, that something wasn’t right.

The doctor informed us that there were a few things they saw on the ultrasound that can be associated with Down syndrome, and she thought it would be best if I did the genetic screening that looks for chromosomal abnormalities.  I cried, of course, because no mom ever wants to hear that there is anything wrong with their baby. But I tried to not worry about anything until we knew for sure. It would be at least ten days before we would hear the results, and maybe longer because it was a holiday.  Luckily, we were off to Colorado the next day with J.P.’s family.  It served as a wonderful distraction and some time away from boxes and projects at the new house. 

Exactly ten days later I got a call from the nurse.  They wanted me to come in that afternoon to go over my test results.  I’ve been around long enough to know that they don’t give bad news over the phone- if everything was normal they would have told me then and there.  I wanted to vomit for that entire three hours between the phone call and going into meet the doctor.  My test results came back positive for Trisomy 21, or Down syndrome.  There is a 1 in 1,500 chance of a false positive, but given all of the markers they had seen on the ultrasound we are probably not one of those false positives. We decided to accept the probable diagnosis and not do any further invasive testing. 

J.P. and I left that meeting feeling overwhelmed, but not crushed by any means.  We were still grateful to have another little boy on the way.  Will we love this baby boy just as much as we love all our other ones?  Absolutely.  In the car on the way home J.P. said to me, “God has been preparing us for this baby without us knowing for a long time.”  And he is absolutely correct.  God gave us this little boy for a reason, and we are going to do everything we can to give him the best life possible. 

We went straight home and told our boys.  Thankfully, there wasn’t much explaining to do.  Jack, Luke and Ben are all around kids with Down syndrome on a daily basis at school and we have discussed it many times over the course of the last 5 years.  Jack or Luke had even asked us when I was pregnant with A.J., “Will this baby have Down syndrome?”  We simply replied, “Probably not, but we would love him just the same if he did.” 

The following Monday we had an already scheduled appointment with a maternal fetal medicine doctor, Dr. Rosnes, to look more closely at the baby’s heart.  It was another overwhelming appointment with so much info thrown our way we could not process it all.  He said our baby has a diaphragmatic hernia and a heart condition, both of which can not be treated in Tulsa.  I will have to deliver the baby somewhere else.  I think J.P. grasped the severity of the situation much sooner than I did.  We came home and I thought to myself, “It’s all fixable.”  Then, I googled it.  Bad idea.

A congenital diaphragmatic hernia, or CDH, occurs when there is a hole in the diaphragm.  This allows the organs that should be contained in the abdomen to move up into the chest cavity. Our baby's liver is slightly protruding up into his chest cavity on his right side.  This is a very serious condition which can be life threatening, as it affects lung development.

The first few weeks were overwhelming, stressful and scary and we were still in a little bit of shock.  Since then we have been to Dallas twice and Kansas City once to meet with doctors and visit hospitals.  We have met with cardiologists, pediatric surgeons, neonatologists, radiologists and had what seems like a million ultrasounds.  We have been working hard to make the best plan for this baby and for our family. 

It has been a crazy and stressful journey- and it's only beginning. We will try to keep everybody updated along this crazy journey. 

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