Sawyer’s Story (part 4): Nights

December 24, 2010 at 9:24 am | Posted in Death, Grief | 5 Comments
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Sawyer was such a good baby.  He was 8 lbs. 1 oz. at birth so he could go 3 hours between feedings almost immediately.  He had started to go 4 hours between feedings when he was 4 weeks old.  Sawyer did get up in the middle of the night like most other newborns.  Sawyer slept in a bassinet in our room.  He would cry and I would get up.  I would feed and change him.  Evan would often help with changing Sawyer and then bring him to me to feed.  Unlike with the twins, there was no other baby on deck waiting to be changed or fed.  It was just Sawyer. 

I know I was not always super excited getting up in the middle of the night with Sawyer.  I was tired.  I was cold.  I had night sweats and would wake up soaking.  I would quickly change before feeding Sawyer.  After Sawyer died, I still had the nights sweats.  I would still wake up soaking.  I still thought I heard his cries but they were mine.

As I left off in this post, Evan and I were trying to figure out options that would allow us to get some more sleep.  We had a night nurse with the twins.  We were very lucky when the twins were born my grandfather and one set of Evan’s parents gave us the gift of having a night nurse.  It did not even cross our minds to consider having a night nurse with Sawyer.  After twins we felt like we could handle one newborn with no problems.  And we did.  Until the twins got sick and were getting up along with Sawyer.

Evan came up with the brilliant idea to call one of the night nurses who helped us with the twins.  The one we called is very good and always very booked.  I figured that she might have an available night in February.  However, when I called she had a free night that week!  She wanted to work either Christmas Eve or Christmas night. 

We are Jewish and she is not.  I thought it might be better if she came Christmas night.  I did not want her to work Christmas Eve and then have to sleep Christmas day.  She said that she was always done with her family Christmas dinner by 8 pm.  We agreed she would come to our house between 10:00 pm and 10:30 pm on Christmas night.  Evan and I were so excited that sleep seemed to be in our future.

Sawyer’s Story (part 3): Tuesdays

December 20, 2010 at 12:02 am | Posted in Grief, mourning, twins | 6 Comments
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As I previously wrote, everyone in our house was exhausted in December of 2009.  The twins were getting better but were still house bound.  After a few days we were going stir crazy.  Tuesday of that week it was time for the twins to take a nap and for me to feed Sawyer.  The twins did not want to take a nap.  After reading a lot of books and singing every song I know, I thought I had put the twins to sleep.  I finally went to feed Sawyer.  I heard something, ignored it and continued to feed Sawyer.  A few minutes later the noise became so loud I had to go investigate. 

I held Sawyer, who was very calm despite being interrupted during his feeding, as I walked into the twins’ room.   There was pink fluffy stuff all over the room.  It took a few seconds for my brain to register what happened.   The twins opened the doors to two small unfinished storage spaces in their room.  Those doors were hard for me and Evan to open.  However, not only did the twins open the doors but they went inside and ripped out the pink fiberglass insulation.

Sawyer began to cry because he realized he was still hungry.  I was not sure what to do.  So, I closed their door.  I was pretty sleep deprived.  I figured if I shut the door maybe the image of our 2 1/2-year-old twins playing with pink fluffy insulation could really just turn out to be a dream. 

Luckily, one of my brother-in-laws was living with us at the time.  The twins affectionately named him Uncle Wacky.  Uncle Wacky was less sleep deprived and thinking much more rationally.  He cleaned up the insulation, watched the twins and saved the day.  I went to feed Sawyer and hoped the twins did not dismantle any other parts of the house.

Note:   Uncle Wacky took the picture of Sawyer in his sunglasses that is in this post.

When Evan got home from work that night we were all there and still in one piece.  I told Evan about our tough Tuesday.  However, we realized that our sleep deprived selves could not take too many more days like this one.  Evan and I began to discuss some options for more help which could possibly allow us to get more sleep.  We  also remembered another Tuesday five weeks earlier when we first met Sawyer.   Our “Tuesday’s child . . . full of grace.”  (a line from a nursery rhyme by A. E. Bray’s Traditions of Devonshire)

It is not “if” we will lose the things we love, it is “when.” 

But as we lose, can we not gain a deep knowing that in the presence of grace,

love is eternal?

– – Author Unknown

Yahrzeit

December 15, 2010 at 4:44 pm | Posted in Death, Grief, mourning, traditions | 13 Comments
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As I wrote in this post, I really appreciate most of the Jewish mourning customs.  And for the most part I am on board with observing the Yahrzeit, a time of remembering the dead by reciting the Kaddish, lighting a 24-hour candle, and remembering the person who has died.  The Yahrzeit falls annually on the Hebrew date of the deceased relative’s death according to the Jewish calendar as opposed to the secular calendar.  

My only issue with observing Sawyer’s yahrzeit (not counting the fact that I cannot spell the word) is that according to the Jewish calendar Sawyer’s yahrzeit is tomorrow.  And, like most Jewish holidays it begins at sunset the night before and lasts for 24 hours.  Tonight we will light a candle and say a prayer for our sweet baby boy.  

We will say kaddish, a mourner’s prayer.   Anita Diamant writes in her book Saying Kaddish, that “Kaddish reminds mourners of their obligation both to dream of a world of peace and to build it — without delay.” I think this means that I should continue to repeat to myself the phrase I have already mentioned in an earlier post.  “Remember the past, hope for the future but live in the present.”  And thanks to my very wise and close friend I have a new quote from the movie Kung Fu Panda:

“There is a saying: yesterday is history, tomorrow is a mystery, but today is a gift. That is why it is called the “present.” ”

No promises that I can do this but I will try not to dwell on how different our lives were a year ago.  I will try hard not think about the secular anniversary of Sawyer’s death because it is not today.  I will try to stay focused on today’s gift.

Exhaustion

December 12, 2010 at 11:44 am | Posted in Grief, mourning, twins | 2 Comments
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At the beginning of December last year a series of unrelated events began to happen at our house.  First, one of the twins had a crazy reaction to his H1N1 booster.   It was like there was a big red ring around his arm.  I took him to our pediatrician (and friend).  We got a referral to an allergist.

Second, Sawyer continued to have congestion.  We were told when he was released from the NICU that he still had extra fluid and that he might have some congestion.  So, we tried not to worry about it too much.  One set of my in-laws came to visit and meet Mr. Sawyer that first week of December, 2009.  Evan took Sawyer to the pediatrician at the end of that week.  The pediatrician said that Sawyer was congested but it was very normal for a newborn to have extra fluid or possibly a cold.  We had been putting saline drops in his nose a few times a day and that seemed to clear up the congestion.  The pediatrician said to continue the saline and Sawyer would be fine. 

Third, was the croup.  The twin without the reaction to the H1N1 shot started to cough like a seal.  I had never heard of croup but quickly found out about it when I took her to the pediatrician.  She had to have breathing treatments but did not have to be hospitalized.  The twins, who had been sleeping through the night (for the most part) for over a year, were now up quite a bit.

Sawyer was over 8 lbs. and he would go at least 3 hours between feedings.  However, between the feedings, the twins and life in general exhaustion began to set in.  I knew that lack of sleep was common with a newborn.  I also believed that we would find some balance in our lives which would involve more sleep.

As I wrote about in this post, time can be tricky.  Someone told me the following: 

Nights with a baby can be long but the days go by very quickly.  

We had no idea just how quickly our days with Sawyer would go.  Despite being tired, our days with Sawyer were much brighter and I am so very grateful for every one of them.

Life with Sawyer

December 8, 2010 at 11:38 pm | Posted in silver lining, twins | 8 Comments
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Once Sawyer was home from the hospital the twins were fascinated him.   Meanwhile, Evan and I tried to figure out how to manage life with a newborn and 2 1/2-year-old twins.  

The moment Sawyer cried one of them would run to get his pacifier.  The twins would always make sure that he was covered with at least a blanket if not other things. . .


A very wise and close friend advised me and Evan that at our wedding we should stop every once in a while and just enjoy the moment.   I thought our wedding would go by very quickly and it did.   I did not think that our time with Sawyer would be so quick.   I wish I had stopped to just enjoy more moments with Sawyer.

Awkward Appointments & Awesome Acting

December 4, 2010 at 4:44 pm | Posted in Death, Grief, mourning | 6 Comments
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I was cast in one of the lead roles in my 6th grade play, The Taming of the Shrew.  Andrew Schulz had to kiss me on stage but that is different story.  My acting career pretty much began and ended right there in 1982 in my elementary school all-purpose room.  Until I became a bereaved parent.  In 2005, I was cast in the role of a mother with a newborn son who died.  In 2009, I was cast for the role once again.  

William Shakespeare wrote, “all the world’s a stage.”  This is so true in the life of a bereaved parent.  I will be out to dinner or talking to someone on the phone and they will say “you are doing really great.”   I will try to remember what exactly I said or did to give such a good impression.  And, I think to myself what a good actress I am.  

Then there are other times that I seem to forget my “I am doing really great” lines.  For example, I went to the dentist the other day.   I have not been to the dentist since the week before Sawyer was born.  I have gone to the same dentist for over 10 years and I don’t mind going there.  I knew they would ask “how is the baby?”  We did not send out birth or death announcement for either Sawyer or Jake.  I could have avoided the whole thing and switched dentists (I did switch hair salons for this very reason).

I chose to stay with the same dentist and play my part as the bereaved mother.  However, my “I am doing great” lines had all been forgotten.  I am pretty forgetful these days so I should not be surprised.  Instead, I cried.  I cried and explained that our perfect baby boy had died.  Luckily (or unluckily depending how you look at it), during a dental cleaning there is only so much crying and talking you can do.

After crying through my dentist appointment I was happy to get out of there.   As I drove away I realized this was the first time in months that I had spoken about Sawyer for so long.  Now that I think about it maybe the title of this blog works both ways – it could also be awesome appointments and awkward acting.

Home from the hospital

December 1, 2010 at 4:04 pm | Posted in silver lining, transient tachypnea, twins | 6 Comments
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The rest of our stay in the hospital was uneventful.  Sawyer stayed in the room with us.  He and I both got checked out every day.  The doctors and nurses reassured us that transient tachypnea was common in c-section babies and that Sawyer was healthy.  In fact, I asked anyone who walked into my room about transient tachypnea.  If the person I was asking had heard of it before the answer was the same.  It is not life threatening.  It is common.  Sawyer would be fine.   

We were both released to go home on that Saturday.  My parents had been staying with the twins.  I had never been away from them for so long.  I could not wait to get home and introduce Sawyer to his big brother and big sister.

Bringing Sawyer home

Sawyer is home!

Once we were home I had allowed myself to enter back into the land of believing that everything would be ok.  Sawyer was perfect.  He was a full term baby.  He had been released from the NICU.  He was fine.

A certain innocence was lost after Jake’s diagnosis and death.  The belief that I had that I would get married, have children and live happily ever after was shattered.  I can’t say exactly when but some time after Jake’s death I began to have hope again.  I hoped for days that were not so dark.  I hoped for more children.  Again, it did not take the path I thought it would but I did get pregnant with the twins and with Sawyer. 

I had convinced myself that if babies were not premature that they would live long happy lives.  I let myself hope and believe that we would raise Sawyer.  I had the false sense of security that Sawyer would lead a long happy life.  I let my guard down.  I let myself believe that we could not possibly bury another child.  Life could not be that cruel – could it?

Sawyer’s Story

November 21, 2010 at 9:36 am | Posted in NICU, parents, pregnancy | 4 Comments
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Notes: 

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.

Happy Birthday

November 17, 2010 at 7:18 am | Posted in Grief | 17 Comments
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Today would have been Sawyer’s first birthday.   Or, more accurately it is his first birthday but he is not here to sing to and hug.  I have so many unanswered questions.

  1. Would he have blue or brown eyes?
  2. What would he look like now?
  3. Would he have been walking?
  4. What would have been his first word?
  5. Would he throw his cake on the floor like his brother?  Or, would he dive right into it like his sister?
  6. Why did Sawyer have to leave us so soon?

I will never know.  These and so many other questions will remain unanswered.  

However, I do know that I will always love and miss him.  

Sawyer, somehow I hope you know how much you are loved and missed. 

Happy Birthday sweet baby boy. 

Sawyer

P.S.  I do hope one day the results from the Mayo clinic study will help me to better understand at least medically why Sawyer died. 

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.

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