May 28, 2012 at 10:28 pm | Posted in Grief, life after loss, normal?, pregnancy | 18 Comments
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The doctor who told me that I was most likely having a miscarriage put me on bed rest for a few days.    Bed rest for me equals time where my thoughts can take over any rational part of my brain and run wild.  Bed rest means that I can not resort to my usual defense of keeping so busy that I do not have time to think.

I cried on the couch as I watched the twins play.   I was so lucky that my mom was able to come to town.  I told her that she did not need to come.  I knew by the time I spoke to her that no amount of bed rest was going to help.  She said she wanted to come anyway.  I did not argue.

I thought writing about it in my last post would somehow help.  I reread my post and it turns out that I did not actually write what happened.   So here it is, I had a miscarriage.

I will be fine.  I will continue to get up and live just as I have every day, week, month and now years since Jake and Sawyer have died.

August & Awkward Appointments (part 2)

August 18, 2011 at 11:48 pm | Posted in Grief, mourning, pregnancy, silver lining, twins | 7 Comments
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As I wrote about previously in this post, doctor’s appointments can at times be awkward.  I am not a big fan of the forms that you have to fill out about your medical history.  I understand why they are necessary but I truly dislike listing the birth and death dates of Jake and Sawyer.  The OB forms do not even have enough lines for me to write all of the complications before and after pregnancy that we have had.  I am sure one day these forms will not bother me but today they do.

The twins had their 4-year-old check up today.  A new nurse came to get us from the waiting room.  As she brought us into the room she asked me, “Are you expecting company?”  I looked at the twins and Evan and thought to myself, “how many more people can we fit in this tiny exam room?”  And, who else would I be expecting?  Then the nurse looked at my stomach and repeated the question.  My quizzical look turned to horror.  Really, is she really asking me if I am pregnant?   Yes, she did.

That question is emotion-packed.   The times when I answered yes to that question – thoughts of being pregnant with Jake, the twins and Sawyer.  The realization that my stomach apparently still has a pregnancy pouch.  Or, maybe I just made an unfortunate outfit choice.

The nurse was reading over our medical charts as my mind was still racing.  I could see in her eyes that she had just read about Sawyer, Jake or maybe both.  She looked at me and apologizes.

Overall the day was a success.  One outfit for Good Will.  Two healthy twins.  Three weeks down in AugustFour beautiful children.

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Sawyer’s Story (part 2)

November 23, 2010 at 9:38 pm | Posted in father, mother, NICU, parents, pregnancy, transient tachypnea | 6 Comments

The morning of November 17th we drove to the hospital.   It was all going according to plan – we had even packed a bag.  The previous two emergency c-sections Evan had to leave the hospital to go get our things.  

It took a few times for the doctors to get the epidural correct but before we knew it I was being wheeled into the operating room.  I remember the doctors calmly talking about their day during my c-section.  There were three people in the operating room with me and Evan.  In contrast,  Jake and the twin’s birth were both crowded and far from calm.  At 1:52 our beautiful perfect baby boy was born.  

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We all went to the recovery room together.   I could not help but to think back to the recovery room after Jake was born.   Evan and I were there without our baby.  We did not know if we would ever see Jake alive again.   Now, here we were holding our full term 8 lb, 1 oz. baby boy.   Not only could we both hold him but I was able to feed him.

We all left recovery and went to our hospital room together.   I did not want to let go of him.   Two hours after being back in the hospital room I tried to feed him again.   His color seemed to change.   We asked a nurse to come in the room and take a look at him.   She said that she needed to take him to the nursery to check him out.   The nurse came back a few minutes later to tell us that he was being admitted to the NICU for transient tachypnea.

My brain could not process what was happening.   Our baby (who still had no name at this point) was perfect.   He was a full term baby.  He was 8 pounds!  Jake was 14 weeks early so of course he would go to the NICU.   I had even thought there would be a good chance the twins would go to the  NICU.   How could our full term singleton possibly be in the NICU?    

Several doctors and nurses explained to me that transient tachypnea was very common.   It is extra fluid in the baby’s lungs which would normally be squeezed out when the baby went through the birth canal.   During a c-section there is no squeezing so the fluid was still there.   I heard the words but it still did not make any sense to me.  This could not possibly be happening.

Sawyer’s Story

November 21, 2010 at 9:36 am | Posted in NICU, parents, pregnancy | 4 Comments
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1.  Thank you for the birthday wishes for Sawyer and for thinking of us.   It means more than I can express in words.  

2.  I am not sure I will be able to write all of Sawyer’s story but I will try.    I had hoped to write in chronological order but as I already mentioned in this post – that plan has changed.  

I had high risk pregnancies with Jake and the twins.   Once you are high risk you seem to stay that way.   So, like the first two pregnancies we went to OB and perinatologist appointments.    However, unlike the first two pregnancies, this time the doctors all said the same thing.   “Everything looks perfect.”   The appointments were shorter because the baby was always doing great and within normal ranges.   We had many ultrasounds all of which showed our perfect baby.

The c-section date was set at 37 1/2 weeks.    It was a bit early to reduce the risk of going into labor.   As I mentioned in this post, I had a slight vertical incision and a horizontal incision during Jake’s c-section.   Once you have a vertical incision doctors don’t like you to go into labor (because of the possibility of your uterus rupturing).

I did go into early labor at the end of October.   We went to the emergency room.   I was given shots of Turbutiline to slow the contractions down.   We spent the night at the hospital.  In the morning I was released and given Turbutiline pills to keep the contractions under control.  Everyone assured us that this was very common.  It seemed to work.  I just felt like I had 18 cups of coffee while I took those pills.   It is not a feeling I was very fond of but I desperately did not want a premature birth (or a visit to the NICU).

November 16 arrived and I was still pregnant!   We went that morning for a scheduled amniocentesis to doublecheck  that the baby’s lungs were fully developed.   Later that afternoon the results came back that the baby’s lungs looked great.

My parents were taking care of the twins while we were in the hospital.   I had never been away from them for that long.   At the suggestion of our therapist ( who we had been seeing since Jake) I wrote them each notes for every night I would be gone.    Evan also taped me reading stories to play them at bed time.   I was packed and cleaned the house.   It was all so very different  from the chaos of the two previous emergency c-sections.   All was going along perfectly as we hoped and planned.

Costco and Confusing Conversations

November 4, 2010 at 4:58 pm | Posted in Death, Grief, mother, pregnancy, silver lining | 10 Comments

2 for 1

A new Costco opened near our house.   I took the twins shopping there the other day.   I put them into the cart.   As I pushed them along, I saw a family who used to be in our Gymboree class.  The mother and I were pregnant at the same time last year.  Our due dates were a few weeks apart.  

She was holding her 11 month old daughter.   She looked at me and she was trying to remember how she knew me.   She asked “Do I know you from music class?”.   I thought about running the other way but decided to just tell her that we were from her 3-year-old son’s Gymboree class.    She said “Right, we were both pregnant last fall.   Smart of you to leave the baby at home.”  

In my mind, I quickly go through the scenarios.    If I had responded with the following:

1.  “Yes, Sawyer is happily at home.   I have to go now so I can get home in time to feed him.”   She would wave goodbye and walk away with her baby.

2.  “No, Sawyer is not at home.    He passed away.”   She would also wave goodbye and walk away with her baby.

As desperately as I want to come home and feed Sawyer, I know it is not my reality.   I took a deep breath and calmly explained that he was not at home.   He had died.

Earlier this week we had another confusing conversation:

A woman was speaking to me and the twins in passing.   She mentioned her 1-year-old son.   As I wrote in this post the twins love babies.  The twins excitedly tell her about their baby brother.   I quietly explain that their brother passed away.

The woman then said to the twins,  “You will see your brother again.”

Smiling the twins quickly reply, “We see Sawyer now.  We bring him flowers.”

The woman tries again, “Well, he is in a better place.”

The twins answer, “Yes – we send him balloons.”

At this point, I walk away and the twins follow.   My head hurts.   I don’t know what to say to the twins or to the women in these conversations.   How do I explain what I do not understand?  Maybe I should just stay home.


October 13, 2010 at 5:00 pm | Posted in Death, Grief, mourning, parents, pregnancy, silver lining, traditions | 15 Comments

Many of you know that October is Breast Cancer Awareness month.   What you might not know is that October is also Pregnancy and Infant Loss Month.  In 1988, President Ronald Reagan proclaimed October to be Pregnancy and Infant Loss Month.

In October of 1988 I was a freshman in college.   Not only did not know about this proclamation or personally know any bereaved parents, I could not have envisioned in a million years that one day I would be a bereaved parent who would bury two children.

This past weekend we participated in a Walk to Remember.  Across the country thousands (maybe millions) of families walked to remember their little loved ones.   Thank you so much to  the organizers of our walk – Tara, Megan and Aimee.

Evan and I have walked since 2006 in memory of Jake.  Now we walk for Sawyer too.   The event starts with a few speeches.  I am always in awe (and in tears) during these speeches given by bereaved parents.   The stories are all unique in many ways but also the same.     They all have the same tragic ending.

This year I looked around the crowd.  So many families.   So many babies who are no longer with us.   So much heart-break, sadness and loss.   We, along with the other families at the walk last weekend, have the “fear of the unknown. . .behind us, for most of us, because we have already taken a long look at hell.” The Bereaved Parent by Harriet Sarnoff Schiff

After the speeches there is a very short walk.   Note:  Just to clarify this year and last year we did not actually walk.   One of the twins had an accident requiring a two adult clean up right before the walking part of the event this year and last year

The twins writing to Sawyer and Jake

The last part of the event is a balloon launch.   We all write notes to our babies on butterfly shaped paper.  This year the twins had a big discussion about what to write on their notes.   We are not exactly sure about the topics covered in the discussion but they both completed their notes to their brothers.   We then had to explain to the twins that we needed to attach the notes to the balloon strings.   Attaching the notes to the balloons was ok with the twins.   The next part, letting go of the balloons, took some convincing.    Evan and I have gone to great lengths to emphasize the importance of holding onto balloons.   We were sending very mixed parenting signals.   However, we finally were able to pry their little hands off of the balloon strings.    And the notes were lovingly sent to Jake, Sawyer and all the other babies we remember.


August 19, 2010 at 4:02 pm | Posted in NICU, pregnancy | 1 Comment

Jake was immediately brought to the NICU and I went to the recovery room.   After the recovery room I was put on a floor with the high risk pregnancies.  A good friend’s mother is a nurse at the hospital.  She wisely decided that I should not be on the same floor as happy parents with their healthy newborns.

After what seemed like an eternity (but actually was only several hours), I was allowed to go visit Jake.   My husband wheeled me into the NICU.   I could not see him in his isolate from my wheelchair.   I stood up so that I could look at our son for the first time.  As I mentioned in this post, I had seen Jake wrapped up like a baby burrito for 1 second as he was whisked out of the delivery room. All I saw at that time was his face but now I could see his whole body. He was so tiny and so wonderful.   There he was all hooked up to multiple machines – but he was alive.  

I stood as long as I could by his isolate.   My epidural had leaked and I did not seem to notice the blood dripping down my legs.   A nurse told us that we could not visit for long.   I thought she must be mistaken.  He was our baby we were going to stay with Jake forever.   She came back to explain that too much stimulation would not be good for him.  

After singing and reading to Jake my husband wheeled me back to my room.   I knew that Jake was not in good shape and that I did not feel so well either.   We both just needed to get through the night.

And, we did!   Jake was still alive on August 15th.   I tried to follow doctors orders and not visit too much.   My husband was able to visit more often which was a huge comfort to me.  

Every day I was able to visit Jake once maybe even twice.  Visits with Jake were never long because we did not want to over stimulate him.  We sang and read to him.   My husband and I each got to change his diaper one time.   Jake was never alone.  NICU nurses and/or doctors were always with him.  The NICU nurses are amazing people.  I am still thankful for their wisdom, caring, patience and kindness.

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. 

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.

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