August 14

August 14, 2010 at 4:20 pm | Posted in hydrops, pregnancy | 7 Comments

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. 


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  1. Happy Birthday Jake. I love you. POP

  2. Thinking of you all on Jake’s Birthday. Happy Birthday Jake. I wish I had the right words for you all. Lots of thoughts and prayers – hope you can feel them.

  3. Thinking of you. Happy birthday to jake. Xo xo

  4. […] Jake and Sawyer‘s deaths were due to circumstances beyond our control. I cannot describe in words how horribly helpless it feels as a parent to watch your child die and not be able to do a thing to prevent it.   The March of Dimes gives us a chance to do something to hopefully prevent another child from dying.  Maybe, just maybe, another family will be spared from having to try to figure out how to live in this world without their child/children. […]

  5. I blog frequently and I really thank you for your content.

    The article has truly peaked my interest.
    I am going to book mark your blog and keep checking for new details about once per week.
    I opted in for your RSS feed as well.

  6. […] day, thousands of babies are born too soon, too small and often very sick — just like Jake was almost 11 years ago. Likewise, thousands of babies are born with birth defects or unknown […]

  7. […] Jake, I started to write to you on your birthday.  I wanted to tell you how much we love and miss you but I just could not write.  This year […]

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