Birthday Benches

August 20, 2015 at 11:36 pm | Posted in Grief, hydrops, Jake, life after loss, Love, NICU | 9 Comments
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Jake never left the hospital.  His short life was spent entirely in the NICU.  The only other places Evan and I went with him were the consult room and a small outdoor balcony off of the NICU.

The three of us

While helping with the special project of updating the consult room I heard that the balcony might need some new benches.  It seemed to make sense to me that for Jake’s 10th birthday we should get the benches for the balcony.  So that is what we did.  We miss you Jake.

quote - roses - Lincoln

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a special project

July 22, 2015 at 10:36 pm | Posted in Death, Grief, hospital, life after loss, Love, NICU | 12 Comments
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The “consult room” – every hospital has one or several.  The “consult room” is where Evan and I held Jake for the last time. It is where we were when the ER doctor told us that Sawyer was dead. They were different “consult rooms,” in different hospitals but they looked the same. Standard issue plastic couch and chair. Generic flowery art. Striped carpet.

No one wishes to be in these rooms.  The hospital where all 4 of our children were born has a Perinatal Bereavement Office where I volunteer at times.  The extraordinary people who work at the office decided that they were going to renovate the consult room in the Special Care Nursery of the NICU.   I was lucky enough to help with this special project.

One of Evan’s mother’s paintings is now on a wall of the newly decorated consult room.  On another wall there is painting by an artist who is the great-aunt of other parents who also used the room when their little girl, Lily, died.  Her parents helped with this special project too.

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This is still a room that I hope none of you have to enter.  I know that realistically there are people who will be in that room holding their precious baby for perhaps the first and last time.  I wish that one day all babies will go home with their parents but until that day I am glad that there is now a warm comforting room where families can spend whatever time they have together.

Evan and I are truly honored by the dedication of this room and that this will be part of Jake and Sawyer’s legacy.

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Bereavement Training

October 24, 2013 at 10:14 pm | Posted in Grief, Jake, NICU, Sawyer | 6 Comments
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quote - Dalai-Lama-quotes-be-kind

Today I, along with several other parents, spoke to a group of nurses as part of their bereavement training.  This is the second parent panel I have been a part of in the last few months and I have participated in several others over the years.  At times, I find talking about Jake and Sawyer cathartic.  I am always hopeful that sharing our story can somehow help others.  After each of these panels I have come away with lists of suggestions for nurses and tips for NICU parents.

There is a common theme in all the stories.  All bereaved parents want their child/children to be remembered.  There will not be the lifetime of memories that hopefully other children will have.  The stay in the hospital and every aspect of it is very often all the parents have.  The doctors and nurses are big parts of these memories.  The kindness and compassion of the medical professionals is so important.  I am thankful that bereavement training exists.

No matter how small the baby is or how long the baby lived, parents want their baby treated like every other baby.  They want to be treated like every other parent.  One mom said she just felt like she was in the middle of a really bad Lifetime movie.  We are all hoping that we can change the channel or wake up from the nightmare of outliving our child/children.  Unfortunately, this is our reality.  Thank you to all those who help us along our way.

The Other Baby

September 18, 2013 at 9:44 am | Posted in hospital, Jake, life after loss, NICU | 13 Comments
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“We can leave whenever you want to go.” Evan said for the tenth time.

“Not yet, I can wait a little longer.” I lied.

I was hot and I felt like the walls where closing in on me.  So, not even 5 minutes later I ran out of the hospital.  Evan followed me.

It was the first time we had been back to the hospital since the horrible day that Jake had died.

It started earlier that day.  Evan and I were both home.  Our fog of grief was interrupted by the ringing of the phone.   He answered.  I heard him say, “I am her husband whatever you need to talk to her about you can can tell me.”  I could not hear the response on the other end of the call.  Evan’s sad voice spoke once more, “Do you realize that our only child died last week and his funeral was just days ago?”.

Evan appeared with the phone in front of me.  “It is a nurse from the hospital.  She needs to speak to you.”

The one and only thing that entered my mind was that this nurse was calling to tell me that Jake was alive!!  This has all been a terrible mistake.  Evan and I are about to wake up from this nightmare.  Jake is really waiting for us in the hospital.  I grabbed the phone from Evan.

“There has been a mix up at the hospital.” said the nurse.

My mind and my heart were now both racing so fast that I could not sit still.  “Okay.” was all I could manage to say in response.

“The milk that you had pumped for Jake was given to another baby.”

My mind and heart stopped racing.  What!?  I had been pumping milk since the day that Jake was born in the hopes that he would one day drink it.  Evan would take the bottles of milk, label them and put them into this high security refrigerator in the NICU.

When Jake died we asked if we could donate the milk.  Perhaps at least my milk could help another baby and help us to make some sense over Jake’s death.  We were told that we could not donate the milk because I had been given pain medication after my C-section.  Another loss.

Evan asked if we needed to come dispose of the milk.  The nurses assured us that we did not have to worry about it – they would get rid of the milk.

Except, they did not.  The milk was mistakenly given to another baby in the NICU.  Now the parents of the other baby were understandably upset.

The nurse was calling because they needed me to come in for a blood test to verify that I was not on any illegal drugs when I pumped the milk.  The other parents needed to know that the milk that their NICU baby drank was ok.

“Of course, my blood is ok.”  I whispered as I realized that this call was not going to bring Jake back to us.  Evan held my hand.

“I will come right now to take the blood test.  I know that if we were those other parents we would want/need to know.” I hung up the phone.

Evan drove us the 3 miles back to the hospital where we had left Jake’s body just days before.   A nurse met us out front and led us to a room far from the regular labor and delivery and the NICU.  We were far, far away from any happy parents with their newborns.  The hospital walls seemed to close in on us.

We waited in that room for the blood test.  We waited for 30 minutes.  “We can leave whenever you want to go.”  Evan said for the first time.  And, then we waited 30 more minutes.   He repeated over and over that we could leave.

After 90 minutes I could not take it anymore.  I ran out of the room.   I did not ever take the blood test.  I knew that there was nothing in my milk that Jake would not have been given had he ever drank it.  So, I thought the other baby would be ok.  Or, at least that if the baby was not ok it would not be from my milk.

I will never know for sure but every day I hope and pray that the other baby is alive, happy and healthy.

Tips for NICU Parents

January 12, 2013 at 10:52 pm | Posted in Grief, hospital, NICU, normal?, silver lining | 12 Comments
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This past week I, along with 2 other mothers, spoke to a group of nurses as part of their bereavement training. The nurses all work at Northside, the hospital where we had all 4 of our children.

This is the 3rd time I have been on the parent panel as part of this course.  The purpose of parents speaking is so that we can give feedback about our experiences at the hospital and help the nurses to better understand the needs of the families.  I listened to the other women recount their bittersweet experiences. I spoke about mine.

Along with helping the nurses understand the parent’s perspective, we also spoke about ideas for families with babies in the NICU.  The other 2 mothers had several suggestions that Evan and I had not thought of while Jake was in the NICU.  No one knows ahead of time that they will be a NICU parent.  And, NICU parents do not usually have time to google suggestions for being a parent to a very premature baby.  However, I am going to share this list just in case you or someone you know finds themselves with a child in the NICU.

  1. Take pictures.  Use your phone, a disposable camera or whatever kind of camera is available to you.  I am so thankful that the nurses encouraged us to take pictures.
  2. Video tape.   If it is allowed make video tapes of your baby.  I wish Evan and I had video of Jake.
  3. Pen and journal.  Ask the nurses to write something down about your baby during their shift.
  4. Small stuffed animals.  Carry them around so they pick up your scent.  Place them in your babies’ isolette.
  5. Memory metal.  Use the metal to make a finger or foot print of your baby.
  6. Scrapbook.  The hospital gave us everything that touched Jake’s body.  Evan and I keep all of Jake’s things.  We have been working on a special cabinet to keep it all together but it would be great if we could put together a scrapbook as well.

Some hospitals have organizations to help and support NICU parents.  The group at Northside is called Parents Partnered for Preemies.  Do you have any other ideas to add to this list?

Jake's stuffed animals

Jake’s stuffed animals

Yesterday

November 18, 2011 at 9:58 pm | Posted in Anniversaries, Grief, NICU, silver lining | 3 Comments
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Sometimes I get so caught up in my own story that I miss the rest of the bigger story of the world out there.  Yesterday was Sawyer’s birthday.  It was also World Prematurity Day.  Thank you to Evan for telling me in the first place and to Jessica for reminding me.

November is also Prematurity Awareness Month.  Did you know that in the U.S., 1 in 8 babies is born prematurely and worldwide 13 million babies are born too soon each year (statistics from the March of Dimes)?  3 of our 4 children were born premature.  So many of my friends’ children spent time in the NICU.  If you would like to please comment with who you know who was/is in the NICU.

Another thing happening in the world yesterday was that EC Stilson released her book “The  Golden Sky.”  She wrote about the life and death of her son Zeke.  His birthday would have been today.  In honor of Zeke and her book EC had a blogfest.  She graciously asked me to participate.  I confess that I tried but could not figure out how to post the button.

Today I still have my story but I am also joining the rest of the bigger world’s story.  Hopefully, one day I too will find that  “after every storm, there is a golden sky” (EC Stilson).

EC Writes

NICU Nurses

September 16, 2011 at 11:48 pm | Posted in Grief, hospital, mourning, NICU, parents | 6 Comments
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This week I, along with 3 other mothers, spoke to group of NICU nurses.  The nurses have bereavement training.  The purpose of parents speaking is so that we can give feedback about our experiences at the hospital.   I listened to the other women recount their bittersweet experiences.  I spoke about mine.  This is the second time I have spoken to a group of NICU nurses.   I am very thankful that this group of people are able to be NICU nurses.  I never could do it.  I am so amazed by their skill and compassion.

The other women who spoke turned their grief into action.  One of the women and her husband started a grief group at their church.  Another women writes a blog.  The third woman started a group called Rock Goodbye Angel.   The purpose of the group is to “encourage families who have lost a baby to regain hope by caring for them during their time of grief so that they know they are not alone.”

I think that the 4 of us gave the nurses some helpful feedback.  A few suggestions came out of the discussion:

  1. Hospital staff (nurses, chaplains, etc.) perhaps do not need to bring up topics such as funeral arrangements and autopsies while the baby is still alive.  Parents of babies in the NICU are trying to focus on hope and survival.
  2. Inform everyone in the hospital when there has been a death so before they come into your hospital room they already know.  This way when the person who comes to empty the trash they will not ask how the baby is doing.  Our hospital puts a dove outside the door to indicate tha the baby has died.
  3. It would be great if there were separate entrances and exits for parents whose baby has died.  Waiting in the wheelchair after being discharged from the hospital all the mothers are in the same area.  It was excruciating leaving Jake in the hospital and waiting with happy new parents and their babies did not help.  On the flip side, when I left the hospital with the twins, I was waiting in the wheelchair for Evan to pick us up.  I was sitting next to a mother with empty arms.  I knew what that meant and my heart broke for her.
  4. Continuing bereavement training is helpful for caregivers, friends and family.

“Though we encounter it as suffering, grief is in fact an affirmation. The indifferent do not grieve, the uncommitted do not grieve, the loveless do not
grieve. We mourn only the loss of what we have loved and what we have valued, and in this way mourning darkly refreshes our knowledge of the causes of our loves and the reasons for our values. Our sorrow restores us to the splendors of our connectedness to people and to principles. It is the yes of a broken heart. In our bereavement we discover how much was ruptured by death, and also how much was not ruptured. These tears lead directly to introspection.”  Leon Wieseltier, The New Republic’s literary editor.  (sent to me by my sister-in-law Melanie – thank you!). 

No more NICU

November 28, 2010 at 4:56 pm | Posted in father, mother, NICU, transient tachypnea | 6 Comments

Evan went to the NICU first.  He reported that it was not at all like with Jake.  There were no huge machines hooked up to our baby.  In fact, he was the biggest baby in there.  I just wanted him back in our room – back in my arms.  

It was time to feed him so Evan wheeled me to the NICU.  It was a trip I had made many times before to see a different baby boy.   I choked back the tears.  Inside the NICU it looked the same.  The isolates, the nurses, the babies and our baby boy.  I knew he was a different baby boy but it was all too similar.  The room was hot and it began to spin.  I got sick and begged Evan to wheel me back to my room.  

In the hospital room I cried and tried to pull myself together.  Evan stayed in the NICU and would come back to the room to give me reports.  All the reports were good.  We were told that often once a baby is admitted to the NICU the baby will usually stay until it is time for the baby and the mom to go home.  I pumped and sent milk to the NICU.  I worried about not bonding with the baby.  I worried about not being able to name the baby.  I worried about not being a good enough mother.

The next day I worked up the courage to return to the NICU.  It was still hot.  The room still was spinning but I was able to feed our baby boy.  Bridget, Jake’s NICU nurse, was working that day.  She was not Sawyer’s nurse but she came over to talk to us.  We had not seen her since the morning Jake had died.  It was comforting to see her.  She had recently had a child of her own.  She told us how often she thought of Jake.  Bridget looked at our new baby and as she spoke about him I knew that this was different.  This baby was not Jake.  He would not stay in the NICU for long.  However, I still did get sick as soon as I got back to my hospital room.

The next day our baby boy was brought back to our room.  And we named him, Sawyer Brady.

I am Sawyer

Looking back now maybe this was Sawyer’s way of letting us know that everything was not perfect.  Maybe he was trying to prepare us for what was to come.

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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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.

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