Jake’s Funeral

September 14, 2010 at 9:24 pm | Posted in Death, funeral | 16 Comments

The morning of Jake’s funeral arrived.   It still did not seem real to me.  I just moved through the motions.   Some one told me to get dressed.   I tried to get dressed but quickly realized I had asked my father, brother and father-in-law to remove anything baby related from the house – including my maternity clothes.   I did not see a problem with wearing the black t-shirt and sweatpants that I had been wearing for days.   However, my mom stepped in and dressed me in clothes I knew I would never wear again.

We drove to the funeral home.  We met with the rabbi.   We were allowed to see Jake one last time.   Once again I begged him to open his eyes.   He did not.   Evan and I sang to Jake.   We drove to the cemetery behind the hearse.  I knew there were a lot of people around but all I could see was Jake’s tiny casket.   I could not take my eyes off of it.   It took all of my will power not to jump into the ground with the casket.  I swore that if we ever had to bury another child that I wanted to be buried too.   Later I would have to take those words back.

The rabbi performed a short service.   My brother spoke.  He had just come from my grandmother’s funeral so this was the second funeral he spoke at that week.  My brother also read something Evan had written the night before.   I am still in awe that he had the ability to write anything that night.  Below is what he wrote:

We love you Jake.

You are our sunshine.

You are such a courageous and strong fighter, and we are so proud of you.

Jake, you are a miracle, and we thank you for choosing us to be your parents.

You are so wise for someone so young and so small.  You knew when you had to come into this world Jake, and you knew when you had to leave us to be in a better place.

You are and were the perfect son for us.

Jake, please know that we felt all the love you gave to us during your time here.

We are sad that we could only spend such a short time with you, but we are so glad and thankful for every minute of it.

It is amazing how we could come to love you so immediately and so completely even though we were just getting to know each other.

Then again, we feel like we have known you all of our lives, and you will be in our hearts forever and beyond.

We are so grateful to all of you, both here in person and here in spirit, who have offered such kind words and prayers for Jake and for us.

We know Jake heard them all and appreciated each one.

Jake, we also know that you are at peace and that you are being watched over by all of our loved ones who also watch over all of us from above.

Thank you, Jake.

Thank you for coming to us.

Thank you for choosing us.

Thank you for loving us and letting us love you with all of our hearts.

We’ll see you every night playing up with the moon and the stars.

Anniversaries

September 12, 2010 at 4:40 pm | Posted in Death, Grief | 7 Comments

The tragedy of 9/11 and its’ anniversary are kinds of grief.   It is of course, an enormous source of grief for all of the families and friends who lost loved ones.  It is also the kind of grief in which you realize that the world as you knew it will not ever be the same.

Hurricane Katrina hit New Orleans the week that Jake passed away.   A very close friend of mine took her 5-year-old son in for his check up and the pediatrician found a rare heart condition.   My grandmother had died.  I felt like the world was coming to an end.   So, I asked the rabbi who presided at Jake’s funeral about the possibility that the world was ending.   He replied with an analogy.   He said that it is like when you decide you are going to buy a certain kind of car.   Once you make the decision you start seeing the car every where.   So, my take away from his explanation was now that I was grieving I would start to see grieving every where. . . Turns out you don’t have to look too far for grief in this world.   The record 7.0-magnitude earthquake hit Haiti shortly after Sawyer died.

I know that 9/11, where close to 3,000 people died; Hurricane Katrina, where 1,500-1,700 people died; and the earthquake in Haiti, where almost 230,000 people died are tremendous losses compared to the death of two babies.   But, those babies were mine.   And, my world will never be the same as it was before they had died.

There is not a contest for who has the most grief.   I am not trying to compare my losses to these catastrophic tragedies.   There are not any winners here.  In grief we have all lost.   However, there is still the next day and the day after that.  And one day, there is a point where we will realize that our loved ones are dead but we are still alive.

Fathers

September 7, 2010 at 10:36 am | Posted in father, parents | 15 Comments

In her book The Bereaved Parent, Harriet Sarnoff Schiff wrote, nowhere in the history “of sex discrimination is there a more glaring injustice than that thrust upon a bereaved father.”  I could not agree more with this statement.   Evan, during that awful August, took care of everything.  Evan spoke to the doctors.   He spoke to the nurses.   He took care of Jake.  He took care of me.

I remember once waking up in the hospital around 2 am and trying to figure out where Evan was.   I could hear him but I could not see him.   It turns out he was in the bathroom trying to check all of the messages.  He wanted to make sure he let all of our family and friends know the latest update.   He wanted to ease everyone’s worries if possible.

Evan returned to work 2 weeks after Jake and later Sawyer passed away.    I on the other hand was home on “maternity leave” (which being home on maternity leave with no baby is no picnic – but this post is about fathers not mothers).    Evan got up, got dressed every day and worked.

Jake’s headstone was ordered and when it came in it was wrong.   The name on it was Jack.   The next headstone to arrive was also wrong.   I could not handle it.   Evan took care of all the details and made sure that by the time I saw it, it was correct.   I thank him more than I can ever express in words.   I am still amazed at his strength.

It must be very difficult

To be a man in grief,

Since “men don’t cry”

and “men are strong.”

No tears can bring relief.

It must be very difficult

To stand up to the test,

And field the calls and visitors

So she can get some rest.

They always ask if she’s all right

And what she is going through.

But seldom do they take his hand,

“My friend, but how are you?”

He hears her crying in the night

And thinks his heart will break.

He dries her tears and comforts her,

But “stays strong” for her sake.

It must be very difficult

To start each day anew

And try to be so very brave –

He lost his baby, too.

(Author Unknown)

Evan holding Jake

Evan holding Sawyer

The past, the future & the present

September 3, 2010 at 10:37 pm | Posted in silver lining | 12 Comments

I have been writing a lot about the past.   Here in 2010 some days it feels like Jake and Sawyer passed away just yesterday.   Oddly, on other days it seems like it was forever ago that I last saw them both.   I try to “be present.”  “Remember the past, hope for the future but live in the present”  is a phrase I often repeat to myself.  I can’t remember where I read it or who told me the phrase – I would credit them if I could.  It is pretty hard to stay present all the time.  Have you tried it?

Life throws us all curve balls – death, divorce, infertility, unemployment, miscarriages, sickness (I could go on but you probably get the point).   All of these events cause us to be sad and grieve.   We all grieve in different ways.   If there was a Life 101 class in college on how to handle these events, I unfortunately missed it.  At first, I was looking for the steps to get through the grief (similar to AA’s 12 step plan).   I quickly found out that there are no steps and no plan.   Everyone has to find their own way through the grief.   It is very difficult at times and some days seems impossible.  A few things that help me on really bad days:

  1. I try to remind myself that I am not alone (although I often feel like I am)
  2. A very wise friend once suggested to me that I just try to find one thing I like to do every day and do it.   It does not matter how small the thing is – it could even be taking a shower. . .
  3. Exercise
  4. And, I do remember the past but I try to think back to not only the painful and difficult times but also to the really good moments . . .

Me & Sawyer

A Different Kind of Babysitter

August 30, 2010 at 10:50 pm | Posted in funeral, traditions | 9 Comments
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The doctors asked if we wanted an autopsy of Jake’s body.   Our first question was if there could be anything determined from the autopsy which would further explain Jake’s death.  The answer was no.   Our second question was would anything from an autopsy benefit other babies or medical research.  Another no.   Jake had been through so much.  We did not want him to go through anything else.  So our answer was no autopsy.  (Years later I was heartbroken to learn that parents are not always given the option to decline an autopsy for their child – but that story is for a later post. . .)

We left the hospital several hours later.   Again, I did not want to leave without Jake.  Realistically, I knew that he was no longer there – just his 2 lb. 14 oz. body.   I was preoccupied with where he would be taken.   I did not want Jake to be alone.  He had never been alone.  Jake was inside of me for 26 weeks.   Once he was born he was surrounded by numerous doctors and nurses.  Before we left we were assured that he would not be alone and that Jake’s body would be brought to the funeral home that afternoon.  

At 11 am we went to the funeral home.   We discussed arrangements and picked out a casket.  Turns out there is only one casket Jake’s size.  So once again, we did not have to make a decision – Jake made it for us.   I asked and Jake’s body was not there yet.

Next we had a 1 pm appointment at the cemetery.  We were shown an area called Baby Land.  It is the section of the cemetery for babies and young children.  It just felt wrong for us.  We were taken to the other side of the cemetery on a small hill.   It was so peaceful and pretty.   Evan and I knew this was where we wanted Jake to be buried.

We finalized the arrangements.   Again, I asked where Jake was and if I could go see him.  I know this sounds morbid but I just could not bear the thought of him being alone – even if it was just his body.  We were told that he was at the funeral home and we were allowed to go see him.

Matt, our contact at the funeral home, met with us again.  He told us about Shomerim.

“Shomerim are watchers or guardians of the soul. Jewish tradition requires that the deceased not be left alone prior to burial. “Shomers” and “Shomeretts” therefore sit at the funeral home in close proximity to the deceased, reading psalms and assisting them in making the transition from life to death. This activity is considered holy.”

I felt myself breathe again.   Kevin, the shomerim, sat with Jake and read psalms to him.  Jake was not alone.

August 27th

August 27, 2010 at 9:14 am | Posted in NICU | 12 Comments
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When we got to the NICU I knew that there was not going to be a miracle for Jake.   The ventilator and the medications were no longer helping.   Jake had made the decision for us.   We did not have to be the ones to decide to take him off the ventilator.  This was just one of the many gifts Jake gave to us.

Bridget, the NICU nurse, said that I could hold him.   I had never held him before.   I knew this would be my first and last day to hold Jake.

Holding Jake

Evan was also able to hold him.

Evan Holding Jake

At 6:14 am Jake’s heroic struggle ended. Jake gave it everything he had, and we were and still are so proud of him. Sometimes the challenges you face in life are simply too much.

The NICU nurses helped us to give him a bath and to dress him.  He had never been outside and they suggested we spend some time with him on the terrace outside the NICU.

Family picture

We were very lucky to have been chosen by Jake to be his parents.

I miss Jake today and every day.   Some days are just tougher.

Friday Night

August 26, 2010 at 10:14 pm | Posted in NICU | 1 Comment
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Jake had been having problems keeping his blood pressure up.   The doctors had to increase the assistance they gave him through the ventilator and medications. The doctors had been treating a problem with his blood circulation over the past few days and they hoped that fixing that problem would help Jake. They did correct the circulation problem — however, his blood pressure continued to sink and remained unstable.  He required more and more help from the ventilator to breathe.  In addition, the fluid from the “hydrops”  returned each time the doctors removed it. The fluid added pressure on Jake’s lungs and made it that much tougher for him to get oxygen and caused him to rely even more on the ventilator.

The doctors were at the point where they were doing everything they could for him.   Our update from the doctors on Thursday was not good.  During Friday’s update we were given a choice.   Dr. K explained to us that it now was our decision to keep Jake on the ventilator or to take him off of it.  They had done all they could do for our baby.  And, we were left with a decision that no parent should ever have to make.

We decided we would wait through the weekend before making any other decisions.  And, we would hope for a miracle.

We spent Friday night at the hospital with Jake.   As, Evan wrote on Jake’s Caring Bridge site “It’s our Friday night date, and no one could ask for better company.”

I did not want to end our Friday night date.  Bridget, the NICU nurse assigned to Jake that night, said we should go home.  She also told me that I could call her any time I wanted. 

We did go home and I did get into bed.  I called Bridget every hour.   Around 2:00 am I got dressed and asked Evan to drive me back to the hospital.   He would not.   I called Bridget at 3:00 am and again at 4:00 am.   Bridget said it was time to come back.

I walked down the hall of our house to the room where my parent’s were sleeping.   My mom had come back the Wednesday after my grandmother’s funeral.   My dad had come back on Thursday.  I could not see anything in the darkness and I just whispered softly to my parents that we were going back to the NICU to be with Jake.

Home

August 24, 2010 at 9:36 pm | Posted in hydrops, NICU | 6 Comments

I was not happy to be home.   I could not drive myself to the NICU to see Jake.   I could not go to my grandmother’s funeral.  Sadly, my grandmother had passed away that Friday evening around dinner time.  I would not have gone to the funeral even if I was physically able to – I could not leave Jake.    

Evan would drive me to go see Jake.   I would pump breast milk and bring it to the NICU to be stored in this giant top security refrigerator.  Jake could not drink the milk but I was pumping it and storing it for when he could.   We would label each bottle with all of my medications (the medication to get the fluid out of my lungs, the pain medication and I am sure a bunch of other medications I have forgotten).      

I would try to stay as long as I could.  Evan would often bring me home to rest and then go back to the hospital.   The day of my grandmother’s funeral I did not feel well enough to go to see Jake.   Five years later, I still regret not seeing him that day.  A few of my cousins, who were also unable to go to the funeral, came over to our house to visit with me that morning.      

The NICU doctors would give us a report in the mid morning.  If we were not in the NICU at the time the doctors would call us.   The doctors were even able to begin to reduce some of the medications and treatments they needed to give to Jake to aid him in his fight and keep him going.    

As the days went on, the doctors were able to further reduce the medications and treatments needed to keep Jake alive. At the same time, they started to look for causes for the “hydrops” — the medical condition which caused the fluid build-up in his abdomen and the swelling in his body.    

Unfortunately, finding the cause could be something like finding a needle in a haystack. Often, the best method they could use was to try to eliminate possibilities. In many cases of nonimmune hydrops, the doctors never are able to find the cause. As long as it went away, we didn’t care. Over the first week, the doctors were able to eliminate many possible causes for the hydrops, but many remained, and some could not be tested for until Jake was stronger and doing some activities that he could not yet handle (such as feeding). The doctors were able to remove some of the fluid which reduced the problems with Jake’s breathing and  blood pressure.  Distressingly, the fluid returned over the following few days after it had been removed.    

We tried to take things day by day and we remained hopeful but realistic.  We continued to sing and read to Jake.  We were cautiously optimistic.     

Visit with Jake

Going Home & Grandmother

August 21, 2010 at 2:22 pm | Posted in NICU | 4 Comments
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Every day Evan, my husband, would wheel me to the NICU to see Jake.  I would usually be crying on the way there and on the way back.  We ran into a few tours that the hospital gives to pregnant couples.   I was sure that if they were not already nervous about the impending birth of their babies, seeing me and Evan crying while wheeling through the hospital was enough to terrify them.   

My parents, along with both sets of Evan’s parents (his parents divorced and both remarried when he was 4) were at the hospital those first few days.  They all visited Jake and sat with me in my hospital room.  Jake seemed to be stabilizing and one set of Evan’s parents left.  My parents were still there and staying at our house.  Evan slept in the hospital room with me every night.  

On Wednesday of that week I had some trouble breathing.  It turned out I had fluid in my lungs – most likely from all the stuff they pumped into me before Jake was born.   I had to be put on oxygen but I would be fine.   My parents announced they were leaving.   As I mentioned in this earlier post my grandmother had not been in good health.   However, her health had been declining for several years and she always seemed to bounce back.   I knew if my parents were leaving, while I was still in the hospital and Jake was in the NICU, that meant my grandmother was very ill. 

My brother and I were very close to our grandmother.   We always wanted to go to our grandparent’s house.  Our grandparents made everything magical and fun.  We would play, sing and go to the beach.  Our grandmother taught us to jump waves in the ocean.    She told us that if we got knocked down to get back up and to always keep one eye on the waves.  Grandmother would give us chocolate pudding or yoo-hoos. What could be better? 

So, my parents would not tell me anything about my grandmother’s condition – just that they were leaving to go be with her.  I wanted to be with her too but I would never leave Jake (plus I was not well enough to travel).   

Evan continued to wheel me in the wheelchair up to see Jake – except for the one night I had to be wheeled in a hospital bed.   A nurse helped get me to the NICU that time.   I was not allowed out of the bed but it was level with Jake’s isolate so, they just wheeled me next to him.   We were even able to hold hands that night.  Okay, I just put my finger into his tiny hand. 

Holding hands with Jake

My OB told me that I was going to be released from the hospital in the next day or so.  I tried everything I could think of to persuade her into letting me stay.  Even though I was not Jake’s primary caregiver or spending hours and hours with him, I did not want to leave the hospital.   I took comfort in the fact that Jake and I were in the same building.  The thought of leaving without him was unimaginable.  

All of my attempts to stay in the hospital failed.  We were planning to leave the hospital on Friday night after dinner.   There was no part of me that wanted to go anywhere but back to the NICU.   

I was not able to eat much during those days however, the nurses still brought me meals.   Dinner arrived that night and I looked at the tray.  There was chocolate pudding – I know this sounds crazy even as I write it, but I felt like the pudding was some sort of sign from my grandmother.  I somehow knew that the sign meant that she had died that evening.

The NICU

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.

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