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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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

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