A Gift, A Release

In my eulogy I described Evie’s death as beautiful, and I know it sounds strange, but I stand by those words. I know these things I write are intense and personal and maybe hard to read, but I share because I want my loved ones (you) to know that these things are okay and we can actually survive them!  Maybe I am talking myself through it too?  Anyway, today I wanted to write about the death of our baby because I understand that death is a thread that connects and enriches our human experience.  The death of a baby seems so shocking and horrific, but actually it wasn’t that way for us.  I don’t really know what I believe happens when we die, but I know that death was a gift, a release for Evie.  
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When the time came to remove Evie's life support, Kabir and I felt very ready.  We had solidified our decision at the care conference with ten of Evie’s doctors, and we knew for certain that Evie was going to die no matter what.  By ending her life support, we would have the opportunity to make her death peaceful and be there for her. Leading up to Evie’s death, Kabir and I had spent a week doing beautiful and difficult things that felt right for us (These Last Days).

That day we learned what we could about the process of dying.  (I was in a logical mindset, not an emotional one yet.) I asked some key questions: Would she gasp for air once off the ventilator? Yes.  Would she turn blue? Yes.  Could she end up living a long time off life support? No, maybe an hour at most.  Would she cry or fight it? No- she would be medicated and she was very weak. Would she suffer? No- she would be medicated. (In my mind I thought- how in the hell can you know if she’ll suffer?  Have you ever died?! I had to let go of that fear. . .) We learned that the doctor would remove all life support, and I would be allowed to hold Evie while she died.  We would be left alone with her for as long as it took, and we could call in the doctor when we felt ready to have him check on her.  We could spend as much time as we needed with her body once she passed away.  (Some parents even spend the night with their dead baby- sleeping with her, snuggling her, etc.  It might sound sad and morbid- but I could truly understand why you might need that.)  Knowing these facts and the “plan” was helpful for us.  Throughout that day, Evie had actually shown signs that she was in fact dying already- her oxygen needs had gone up and up all day, and she was very sluggish and still.  I kept trying to find her behind her eyes, to catch her soul there, but she was far off.  We realized Evie was ready, and so we made ready too.

At 3pm, we signaled the nurses that the time had come.  One nurse disconnected the IV, and placed sweet Evie in my arms.  A doctor came in and removed the breathing tube.  At first, Evie cried a raspy cry and I called out desperately, “She hurts!! Help!!”  I was terrified.  A nurse was ready with a dose of morphine and Evie relaxed.  The three of us were left alone.

Tears quietly fell as I held Evie and rocked her and reassured her. . . “It is okay now sweet baby.  It is okay to let go. . .” Evie closed her eyes and took labored breaths.  It was so sad to see the way her lips formed a tiny ‘o’ as if she was still trying to breath through a straw. . . Poor, sweet little one!  But soon her breaths became more relaxed and fewer and further between. Kabir put his hand on my shoulder and we cried as we watched her.  I did not take my eyes off her face.  Again I whispered to her, “Precious one, it is okay now to stop and rest.  It is okay. . . shhhh. . ."  Slowly, she stopped breathing.  Moments later her body went completely limp and her face became smooth and soft.  She died.

Angelic Evie- Beautiful Release

Peaceful Sweet Child

It was in that instant that Kabir and I realized the extent of Evie’s suffering.  We realized that Valerie had always looked this peaceful when she slept, and that Evie had never once looked this peaceful.   We were grateful that the suffering was done for her.  We were also overwhelmed with love for her, and a deep sense of peace within ourselves . . .We kissed Evie, held her close, and whispered soft loving words to her (and to each other.) We carefully undressed her and washed her with a soft, wet cloth.  We put lotion on her and dressed her in a beautiful pink onesie I had bought for this day.  We took some photos so we could remember her peaceful face and remember how she really looked without a breathing tube.  We cried and hugged and loved and cried.  I don’t know how much time went by, but we knew when we were ready to leave.  We quietly left the room and went home to be together with Valerie too.

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People have warned me that a part of me will always regret this decision.  They tell me I’ll probably wonder whether it would have been better to wait and see what would happen.  But right now I have no regrets and no guilt about letting Evie die.  (I have regret and guilt about other things, but not about that.) I only feel relieved and thankful for the way things happened that day.

Eulogy

On Saturday we had Evie's memorial service.  Thank you to all those who were able to join us in person or in spirit. . . we have been so touched and so blessed to have so many walking beside us on this journey.  During the service, Kabir played two beautiful pieces on piano: "Time" by Hans Zimmer, and "Comptine D'un Autre Été: L'après Midi" by Yann Tiersen.  The second was one he often recorded and played for Evie in her room.  Also at the service, my sister Valerie read a lovely poem called "Little Snowdrop" and my mom read a book called The Next Place by Warren Hanson.  Last, several dear friends and family spoke about Evie and loss and love.  Here is the eulogy I read for our baby:

Here we are at the funeral for our newborn daughter . . . So why does this day feel so okay to me?  I think it’s okay because Evie was a very small person with a very big struggle, and now that struggle is done.  Over these weeks I’ve spent a lot of time trying to separate what was Evie, and what was her illness, and I’ll tell you it was pretty hard to do.  Much of the time Evie was far, far away from that strange and sick body.  But every once in a while she would pop in, and I looked in her eyes, and I saw her soul.   

Sometimes I would sit around in the hospital and wonder- why?  I mean WHY?!  I’ve now started to see how her life and her suffering and our suffering and her dying is affecting so many people . . . For me, one thing that changed was my idea of motherhood.  I remember learning about Evie’s brain damage and being so scared about having a disabled child.   Then, when it seemed she might just die, I realized my fears had been so misguided!  Being a mother means loving your baby no matter how they might be different from the idea you had for them.  Evie has also made me think about my relationship with death.  Death can mean terror and dread and pain and loss.  But now I know that death can mean love and peace and even hope.   I can tell you that Evie’s death was beautiful, and Kabir and I feel blessed to be part of it.   I definitely don’t know what I believe happens to us when we die, but when I watched Evie die I knew it was okay.  She was so peaceful and free.

I wonder how Evie’s short life will continue to affect us all in the months and years to come . . . We love you and miss you, little Evie, and we’re grateful for the things you are teaching us.

Here is a quilt made by friends and family for Evie.
This was presented to me on Mother's Day, before we knew Evie would not last.
It brought many tears and warmed our hearts!  We displayed it at Evie's service. 

These Last Days

The writing here is abbreviated, because it could never ever do justice to our experiences and emotions this past week.  I am sorry.  What do you do when you only have days with your baby?  Here is an account of our last days with Evie . . .

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Thursday

We learned that Evie was dying.  I can’t say I didn’t know. . . I felt a familiar sense of dread and terror for some weeks.  In looking back, even some of my writing from the very first week reflects the sense of Evie’s eventual death.  I had tried to escape that feeling and hold on to hope for her, but on Thursday we learned the inevitable truth.  I felt like I was going to vomit.  Kabir felt shock.

Friday

Kabir and I took turns loving her, holding her, and crying together.

Saturday

We brought Valerie to meet her. (We had been waiting for Evie to come off her ventilator to bring Valerie in.)  I was very worried that Valerie would be scared by all the tubes/wires/machines etc., but she was just happy and excited to finally meet her little sister! I was even more worried that Evie would be overwhelmed by this busy toddler bouncing around the room, but you know what? Evie was peaceful and interested in Valerie- She followed her with her eyes and let Valerie pat her and squeeze her hands and kiss her too.  Evie was alert and quiet and happy the entire time.  Kabir and I were genuinely happy the whole time too.  We felt almost like a normal family for a day.  There was no thoughts or discussion about the future- only love and joy in being all together.

But after introducing our daughters, I was once again heartbroken, desperate . . . the day was a glimpse into the life that could have been.  I thought about Valerie and Evie playing together as little girls.  I thought about how deeply I love my own sister, my very best friend.  I wanted a beautiful life of sisterhood for Evie and Valerie too.

Sunday

 We arranged for Evie to go outside to a small shady courtyard near the NICU.  This was no easy task because we had to reserve a transport isolette and be escorted by a nurse, a respiratory therapist, and a security guard. Again, I worried that it all might be too much for Evie.  Would the sun be too bright?  Would the wind startle her? No. Evie loved it.  I could tell. Yes, she loved it.  And so we were sad, so sad, that Evie would not feel the breeze and the sun and hear the birds with us again. . .  God, the things we take for granted, huh?

Monday and Tuesday

 Our parents came by to spend beautiful quiet time with Evie- a chance for them to say goodbye.  Those days are blurry for me, and I honestly had to stay away a little.  Loving Evie was hurting.  It was hurting too much.  At one point I held Evie on my bare chest and sobbed. . . the tears falling from my eyes, streaming down my neck, pooling at my collar bone, and continuing on from there.  On one hand it felt so normal to have my Evie on my skin with my hand cupped over her tiny head.  But each breath she took was fast and labored and forced by this big blue machine.  Her body felt utterly sick against my body.  I sat and listened to that room filled with dings and beeps, and I smelled chemicals and medicine.  How wonderful to have her with me, but how terrible to have her like that?

Kabir and I spent that night at the hospital, with a silent understanding that we might stop Evie's life support after the care conference.  We rested in Evie’s room for a long time while she slept, and eventually the nurses found us another room where we could sleep until morning. 

Wednesday

We paced the blocks near the hospital and talked about our love, our marriage, and our family.  We talked about the past, the present, and wondered about the future. We talked about how Evie had never really been born, but that she was alive, but that she was not really living a life, but that she wasn't dead, but that she was dying.  What would it be like when she was gone? Who are we anymore? We still are wondering about that.

At 11, we went to Evie’s care conference, where I asked the tough questions whose answers I already knew.  Nobody said anything that I wished they might say.  We knew what we knew, which was that we had to love Evie enough to let her go. . . . we held each other and waited for the time we had set for our daughter to travel on.  Kabir held Evie one last time.  I don't even know if we were crying.  I don't remember what we felt or said leading up to the time that we took Evie off her life support.

Holding Evie on Tuesday

Evie awake on Mommy's chest.

Kabir holds Evie before we are going to remove life support.

Evie's Memorial Service

Evie passed away peacefully in our arms yesterday afternoon. . .

Please join us for Evie's Memorial Service

On Saturday, June 8th at 9:30 am

At Community United Church of Christ,

2650 Table Mesa Drive, Boulder, CO

Instead of flowers, we ask that donations be made to the NICU Fund

at Rocky Mountain Children's Health Foundation in Evie's name:

www.rmchildren.org 

(click "donate" on the top right corner, follow the prompts, 

and type "NICU Fund" under Special Instructions)

Rocky Mountain Children's Health Foundation

2055 High Street, Suite 240

Rocky Mountain Professional Plaza

Denver, CO 80205

Hello, Goodbye, I Love You

Evie's Care Conference

On Wednesday we'll meet with Evie's team of doctors at P/SL.  I am again in thinking (not feeling) mode.  Here are the notes I have prepared. . .

Evie’s case has gone from severe to worse than severe.  We are leaning toward ending her treatment and allowing her life to end, but we want to be 100% sure of our decision, and so we prepared some questions for you about her status and the potential for death versus healing. If (by a true miracle) she were to survive, we also want to know what her quality of life might be like in the short term and the long term.  Some of the questions we will ask might have no direct relevance to her current situation, but they are just meant for us to learn and understand things for peace of mind.  Thanks for taking time to meet with us.

Invitees:

Dr. TH (primary doc.)

Dr. DH (former primary doc)

Dr. WD(infectious disease)

Dr. BB (hematology)

Dr. TS (gastroenterology)

Dr. LR (pulmonology)

Dr. JN (cardiology)

LL, RN (primary nurse)

Thoughts and Questions

Gastroenterology

1.     We learned on Thursday that Evie has developed some dangerous blood vessels in her esophagus as a result of the high blood pressure in her digestive system. Is it likely that she has more of these vessels elsewhere in her system that we just cannot see?  What is the risk these could rupture/ooze and cause her death in the near future?  Assuming Evie was otherwise recovered, how treatable is this issue?  Might there have been any way to prevent this issue given Evie’ precarious condition?

2.     I stopped tracking Evie’s liver function soon after she came off of the ganciclovere. What is the status of Evie’s liver function now? Assuming Evie was otherwise recovered, how likely is it that Evie’s liver would heal?  Over what time frame?

Hematology

1.     Besides bone marrow suppression due to CMV and spleen sequestration due to CMV, what might be causing Evie to require platelets so frequently?  What has been looked into, and what has been ruled out?

2.     What is the mechanism by which platelets get trapped in the spleen, and how might you stop that mechanism? How can you test for spleen function/malfunction?  What, if anything, could be done to help the spleen? 

3.     What is the status of Evie’s bone marrow and how has bone marrow function improved or worsened since coming off ganciclovere?  What, if anything, could be done to help it?

4.     Assuming Evie was otherwise recovered, how likely is it that the bone marrow would heal, and over what time frame?  What about the spleen?

Pulmonology

1.     What is the status of Evie’s lung/heart function and how has it improved or worsened since birth?

2.     Evie has pulmonary hypertension- is this a permanent condition or does that typically resolve with the Viagra treatment?

3.     Assuming Evie was otherwise recovered, how likely would it be for Evie’s lungs to heal, and over what time frame?

Infectious Disease

1.     We now know that Evie’s viral load was at a million copies per unit on 5/25, which coincided with worsening symptoms for Evie.  What are the theories as to why things got so much worse? (Steroids? Internal bleeding? Other?)

2.     Assuming a reduction in viral load would reduce Evie’s physical disease, how reasonable would it be to try phoscarnate to treat Evie?  How would it affect her short-term quality of life?  How would it affect her long-term quality of life?  Is it likely or even possible that Evie’s body could fight off the virus itself at this point?

3.     If, by a miracle, Evie survives, is it possible that Evie’s brain damage could be worse than it was at her last MRI?

Other:

1.     Are the any signs that Evie has recovered in any way since things got worse on 5/25?

2.     Let’s say we gave Evie’s treatment our best shot and she miraculously survived- what are the long-term effects of an extremely prolonged period in the NICU?

3.     What external resources has your team looked into and what did you learn?

We’ve now reviewed Evie’s many issues independently.  My sense is that all the issues combined add up to an unsolvable case. . . . Each issue depends on the other issues in tandem- right?  A depends on B, but B depends on A, so there is really no solution . . .