A Mourning Mom

August 14

Five years ago today, Dr. K2 came to speak with me and my husband about the plan for our baby.  As I mentioned in this post, Dr. K2 was the doctor who mistakenly revealed that the last chromosome (the gender chromosome) of our baby’s DNA was XY.  Dr. K2 is also one of the leading neonatologists in the city.   He told us that the ultrasounds showed that the fluid was still increasing and putting our baby into distress.  Our baby could not survive inside of me any longer.  Our baby’s best chance was to be delivered so that the doctors could remove the fluid. 

I was scheduled for a c-section that afternoon.  Our baby would not have lived through the birth canal so a c-section was the only option.  We were also advised that it might be a vertical as well as horizontal incision depending on the position of our baby.  None of this mattered.  We just asked Dr. K to do whatever was in the best interest of our baby. 

Dr. K (I’ll just call him Dr. K from now on – we never saw Dr. K1 again after the cvs) gave us all the odds.  A baby born 14 weeks premature has a 60% chance of surviving.   A baby born 14 weeks early with hydrops has a 30% chance of surviving.  In my mind I began to rationalize once again that our baby could be in the 30%.  After all,  we were already the 1 out of the 5 to have trisomy 21.  Maybe it was our chance to beat the odds.

The delivery room was very crowded.  There were at least 20 people in the room besides me and my husband.    Everyone was moving quickly (or maybe it just seemed that way because I was so still).  There were a lot of things happening most of which were being done to me (but luckily for me I could not feel a thing because I had been given a epidural). 

At 3:26 our baby was born – alive!  And, if you don’t remember from your 8th grade biology, you can read my post about the road to raising a down’s baby . Or, I will just tell you – XY means that we had a baby boy.   He weighed only 2 lbs., 14 ounces, measured 14 1/4 inches, and arrived 14 weeks early.

After he was born it was not at all like I had imagined (or like anything I have ever seen on TV or movies).  The doctor did not smile and bring me my baby so that I could look at him and hold him.   Instead, another doctor whisked our baby away before I could even see him.  I did get a glimpse of him all bundled up with a hat on his head.  His right eye was shut and his left eye was open  – almost as if he was winking at me.  

I knew that it we still had a long, long road ahead of us but he was alive and we were still on the road. 

Happy, happy birthday to our sweet baby Jake!  We love you more than I can express in words.  Your dad and I wish that we were going to be driving you to your birthday party today.  Instead, we will drive to visit you at the cemetery. 

August 12, 2005

I woke up that morning, took care of Hailey, baked cookies for her to give to her mom and drove to the hospital to drop her off.  

Here is Hailey at the hospital

The plan that day was after dropping Hailey off I was going to work and then I had an appointment with the perinatologist later that afternoon.  I didn’t feel quite right so I decided not to go to work and just hang out at the hospital.  I went to Willys for lunch with my good friend Tina.

I sat in the waiting room of the perinatologist with my husband.   Our average wait time at that office was at least an hour.   I could not sit still.  I kept getting up and pacing.  We were supposed to be going on a trip to visit my family later that night.  My grandmother was sick and our nephew was having his first birthday party.

Finally, we were called back to a room.  The usual drill – get undressed, put on a white cloth skirt and sit on the table.  The nurse began to examine me.  She did not make her usual casual conversation.  Suddenly, she was calling other people into the room.  I heard people frantically talking.  All I could make out was something about not being able to find my cervix.

I was then shuttled into another room and given a shot.  The room started to spin and my heart began to race so fast I am sure it was going to leap out of my chest.   I was whisked away and my husband was told to go to admissions. 

I was wheeled to a room right next to the operating room and hooked up to a machine that measured my contractions – which were 3 minutes apart.  I had apparently been in labor for days.  I thought to myself – how could I have missed that?   I had heard of braxton hicks but I did not think it was possible to be in real labor at 26 weeks. This was not supposed to be happening.

The fluid in our baby’s abdomen did not go away.  It increased, putting pressure on his heart and he went into distress which caused me to go into labor.  The doctors now explained to us that our baby had hydrops. Basically, his body could not process fluid. This would be the first of many medical terms I did not know existed until my children were diagnosed with them.

The plan was now to hope and pray that the fluid would decrease.  If it did not decrease our baby would be delivered that weekend.    If it did decrease I would stay in the hospital until my contractions were under control.  I was given the shot to help our baby’s lungs in case he was delivered.

Shortly after the trisomy 21 diagnosis we started singing and reading from a book of psalms to our baby.  So, we sang and read.  We cried, prayed and waited.