The Whole Story

Here is my best and sleep-deprived effort to tell the WHOLE story of Little Grizzly.

It all started in the streets of Kobe, Japan last May.  I was starting to demand that we stop and eat more regularly.  My brother, B town, even had the nerve to look at me and say, "Are you pregnant or something?"  I snapped back at him that there was no way I was pregnant, just about to start my period.  Big D followed that up with a look that said "You just better leave her alone."

By the end of our Japan trip, I found myself trying to ask for a pregnancy test in Japanese.  The day we left Japan, I had a positive pregnancy test.  Even though it was a miserable flight home, we were both pleasantly surprised.

The summer started and I began counting down the weeks to the end of the first trimester sickness.  Just as the sickness started to subside in August, I woke in the middle of the night with unexpected bleeding.  Big D took me into the hospital with tears streaming down my face.  I thought it was a miscarriage.  After an ultrasound, we found out that it was not a miscarriage, but there was no explanation for the bleeding.  They sent me home and put me on bed rest for a week.

At the end of one of the longest weeks of my life, we went in for a more comprehensive ultrasound.  It was at this appointment that we found out that our baby had soft markers for Trisomy XYZ (I am using XYZ instead of the accurate name in order to be sensitive to those with loved ones with the same disorder).  With the ultrasound report shaking in my weak hands, Big D and I went over to meet with my doctor.  We sat in the room for what seemed like an eternity.  I sobbed uncontrollably.  Big D asked a lot of questions.  My doctor answered questions compassionately and sat close to us patiently.  She told us that the ultrasound reported 'soft' markers.  We had all the possible soft markers for Trisomy XYZ, not just one or two.  The only way to know 100% was to do an amniocentesis.  With the recent bleeding and blood clots in my uterus. I decided against the amniocentesis.  And ultimately, we knew regardless of the outcome, we were going to continue with the pregnancy.

My doctor told us that we should prepare for a baby with Trisomy XYZ and the possibility of this baby being born early.  I remember leaving the doctor's office still in tears.  In such a short moment, my life and my little family's lives had changed forever.  My mind was spinning and my emotions were raw.  Somehow we made it through the night with the help of my favorite Indian curry.

Big D and I decided to keep our situation as private as possible.  I did not think I could handle the looks and comments from people when they found out--as well intended as they might be.   Emotionally I was struggling.  In order to help me process all of the emotions I was going through I started receiving some counseling.  This helped me sort out what I was feeling and thinking and try to find some peace with our situation.  Honestly I don't think I ever found peace because there were still so many unknowns, but I did get to a point where I did not walk around with so much sadness and depression.  During this time period I took every day one at a time. I did withdraw from my friends and social situations.  My apologies to many of you that I ignored or shied away from.  I know some of you knew something was going on, but didn't know what to say. Please forgive me and to many of you, thank you for your patience.

Amazingly, I was still pregnant by the end of December.  Big D and I were happy because the longer I was pregnant the healthier this baby would be despite having Trisomy XYZ.

Finally January 14th, my due date, arrived.  Contractions started around 8am, and at my 11am doctor appointment I was dilated to 5 cm and definitely in labor.  We rushed the boys home to be with our friend and called my mom to have her fly to Seattle ASAP.

I checked into the hospital and got the best epidural ever.  Even though the labor was going extremely well, I still found myself giving into tears as I worried and wondered if I could really "do this."  I don't think there is anything you can do to feel ready to have a baby with a disability brought into your life.  Amazingly, Big D was always encouraging and strong through the whole process.

The time came to deliver or "push."  After a practice push, the doctor realized that this baby was coming out quickly.  The nurse had to get the NICU team to my room immediately.  Once everyone was in place, I did another 1 1/2  pushes and our baby boy was born.  As they rushed him over to the capable NICU team, I froze waiting for the news of what condition our baby was in.

To every one's shock, the baby looked completely healthy.  He checked out to be healthy as well, so there was no need to rush him to the NICU.  The doctor examined him and said that he did not have all the physical features of a baby with Trisomy XYZ.  When she told us this, it finally crossed my mind that there might be a possibility that our baby does NOT have Trisomy XYZ.  I asked her, "Well how will we know for sure one way or the other?"  The doctor said we would have to send some of the blood from the umbilical cord off for chromosomal testing. 

We felt like wanderers lost on an unknown journey over the next two days in the hospital.  We did not have a name for our baby, although T Bear seriously suggested Nelson.  We did not know if our baby had Trisomy XYZ.  There were extra tests done on our baby while we waited for the chromosomal testing to come back.  During one such test, they discovered small hole in his heart.  Luckily this hole is not serious and should close up on its own in a few months. 

Finally we decided on a name, but we still left the hospital with Little Grizzly not having all the answers.  

The day after we got home, we got the phone call about the results of chromosomal testing.  Little Grizzly did NOT have Trisomy XYZ.  

How could this be?  What a relief.  Are they sure?  How do we now mentally readjust?  The doctors were sure before.  How did this happen? What do we call this?  A miracle? A tender mercy?  A surprise? Why did we have to go through the mental and emotional roller coaster of the last four months?  What was the purpose of the last four months?  Our prayers were not that this baby would be born without this disorder, they were that we would be able to love and care adequately for our child no matter how he came to us.

A few days later, I was at my OBGYN's office.  My doctor gave me a huge hug and sat down with me to talk about the whole experience.  I asked her how often "this" happens.  By "this" I mean, someone is told they have all the soft markers for Trisomy XYZ and then the baby is born without it.  My doctor said she has never seen it happen in her experience.  I asked her if I should have gotten an amniocentesis.  My doctor said, "What if getting an amniocentesis would have caused a miscarriage of a perfectly healthy baby?" So true, you just never know.

I still don't have all the answers about this experience.  I am not sure what I am supposed to learn or take away from the last 9 months.  

What I do know is that it was an incredibly difficult pregnancy for me.  Despite that, I am now holding a beautiful and perfectly healthy boy.  I know that there is a God who loves us.  He is aware of each of us and our struggles.  He will still bless our lives even when life is hard.  At times it can be hard to feel His love, but it is worth the effort.

I am now a lucky mother of THREE beautiful boys.  

-Miss T