August 12, 2005

August 12, 2010 at 10:49 pm | Posted in hydrops, pregnancy | 5 Comments

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.

Road to raising a downs baby

August 12, 2010 at 7:39 pm | Posted in pregnancy | 1 Comment
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After the doctor (I will call him Dr. K1) told us over the phone the results of the cvs he said we could call anytime with questions.  So, we called a day later with questions.  Dr. K1’s nurse told us he was on vacation for 2 weeks.   After waiting 2 weeks for the results of the cvs it did not seem possible that we could wait another agonizing 2 weeks for more answers.  Maybe the desperation in my voice or the uncontrollable crying prompted the nurse to put us in touch with Dr. K2.

Dr. K2 met with us on our 2nd wedding anniversary to go over the results of the cvs.  He showed us the map of our baby’s DNA.  He showed us all chromosomes including the last one which was XY.  Somehow in the recesses of my brain I remembered 8th grade biology well enough to now know the sex of our baby.  Everything became much more real.

We continued throughout the summer going to the regular OB appointments and the perinatologist.  Our baby (ok, if you don’t remember your 8th grade biology and you did not look it up – XY is a boy) was doing great even for a down’s baby.  He had a nasal bone, he had all his pinky joints and no heart defects.  We were very optimistic that our baby boy would be a high functioning down’s child.

During July the perinatologist saw fluid in our baby’s brain.  By the next appointment it was gone.  In the middle of July he saw fluid in his abdomen.  We were scheduled to go to Maine for a family trip so, I asked if we were still ok to go.  The perinatologist said sure – there is above normal fluid but we will just monitor it.  

On August 11, I went to the bathroom at work and saw blood.  I panicked and went straight to my OB.  She looked at me, checked my cervix and the baby’s heart rate.  I was fine, cervix was still closed and the baby’s heart was great.  So, I went home.  I even babysat my best 3 year old friend Hailey while her twin brothers were being born.   All seemed well.

How are you?

August 9, 2010 at 6:44 pm | Posted in Uncategorized | 10 Comments
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People ask this question all the time.  It is a common greeting.  I too used to ask the question.  Now,  I can’t answer it.  Or, I cry as I try to answer. 

“How are you?”  

Not so great.  In fact, awful.  Our first son, Jake was born in August of 2005 at 26 weeks.  He lived for 2 weeks in the NICU.  The only time we held him was while he passed away.  Jake’s funeral was August 28, 2005.

After clomid, letersol, 6 IUIs and 2 IVF’s we had our amazing twins in July of 2007.   I treasure every day with them.

In November, 2009 we were lucky enough to have a beautiful full term boy, Sawyer.  At 10:45 pm on December 25, 2009 I kissed my perfect baby good night for the last time.   Sawyer’s heart stopped very early the next morning.  No symptoms, no warning, he was just gone.  Sawyer’s funeral was December 28, 2009.

I take life day by day.  I keep thinking that there must be some purpose to all this grief.  For the almost five years since Jake died I have been trying to figure out what to do with all my sadness.  Since Sawyer died I am numb but I have to keep moving forward.  I am starting this blog to create a purpose for Jake and Sawyer’s lives.  And, perhaps help other families or maybe just my own. . .

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