Grief's Denial and Acceptance

Analytical Frenzy

This week in my microbiology class we delved into the intricacies of antibodies, vaccines, and latent viral infections.  My brain went crazy with the flood of new knowledge related to CMV. . . Since there were only three of us in class on this snowy day, I got the chance to ask many of the questions that have been circling my brain . . .

Why isn't there a vaccine for CMV but we have one for chicken pox (which is related)?
Could I have directly given Evie my serum (and CMV antibodies) to help her fight the infection?
Why do certain viruses like chicken pox and CMV stay latent in you forever?
What are the chances they'll start replicating again and causing symptoms?
Why do some viruses cross the placenta while others don't?
Why do some viruses cross the blood-brain barrier while others don't?
Do antibodies cross the placenta?  If yes, do all of them or just some of them? Why?
How do fetus immune cells "learn" what is self and what is invader?  How can we help educate those cells?
Besides vaccines and immunoglobin, how can doctors support antiviral immune function in neonates?

There were even more questions than that. . . it was a firestorm of questions.  My poor professor gave me a lot of "I don't know." She also gave me a lot of, "That is a very active field of research right now."  I was left stressed and worried, wishing I had known enough to ask some of those questions when Evie was alive.  I was also left with traumatic flashbacks of conversations with doctors.  In fact, this analytical firestorm brought back many of the terrible heartbreaking moments of our time in the NICU- I was always trying to understand exactly what was happening inside her body.  But understanding and being able to DO something were very far separated from each other.

Intellectual Rebellion

I came home and thought about my need to understand the very complicated ins and outs of Evie's infection.  Why?  Why can't I leave it alone and accept that what happened just happened? It was out of my control! 

I have read all about the "stages of grief" and found them to be an annoying bunch of lies that minimize the true experience of grief.  But today I thought- aha!  My "denial stage" is manifesting as intellectual rebellion.  I am trying to find scientific reasons why the terrible thing that happened is impossible.  And on the other hand, if I can learn to explain precisely how it happened, then maybe I can accept that it did happen.  Taking microbiology (and interrogating my professor) are my ways of coming to accept Evie's death.

Rainbows

A Rainbow Baby is a baby you have after experiencing the loss of a baby.  Rainbows come after storms carrying happiness and light. . .  At the same time, they don't negate the storm.  They remind you of the dark that came before.

We have a rainbow coming in April.  We were taking precautions (or so we thought!) but I ended up missing my period at the end of July.  I knew instantly I was pregnant, even after 3 negative pregnancy tests.  Sure enough, a blood test came back positive in mid-August.  It was very much a surprise, because we had decided to wait a while for emotional and physical reasons: My OB said it's good to wait about a year before trying so that the C-section can completely heal.  I was also feeling very raw still about Evie, finding it difficult to imagine how to love another baby after everything we've been through. 

Truthfully, it was a shock- and very scary- at first.  Of course we were planning to try for another baby at some point, but this was way too soon.  Kabir was distressed and worried about my health and the new baby's health.  Meanwhile, I felt very deep guilt about somehow "replacing" Evie.  I still worry that we are being too hasty.  I worry that we are not honoring Evie's life and her spirit by adding another family member so soon.  I have felt ashamed and kept the news pretty quiet.  Normally I'd probably blurt this kindof thing out the second I knew about it, but guilt, shame, and fear have kept me from sharing about our little rainbow until now.

A few months have gone by since we got the news, and we are slowly adjusting to the idea that this is really happening.  I know my close family and friends are happy for us, and we are mostly happy now too.  But being pregnant is not the healing gift it might seem.  I struggle daily with all kinds mixed emotions about everything our family is going through.  I think often about Evie and her short, hard life and wish she could be here and be healthy.

Physically, I am feeling very well, although my OB has been following things very closely.  Fortunately, CMV is like chicken pox- once you have had it, your body has built up defenses and it is not going to kick back up and affect future pregnancies.  I am still of course on edge from time to time about any possible complication.  I felt our new baby move for the first time about a week ago, and I felt a GIGANTIC sense of relief. 

I have already put on quite a bit of weight and my belly is pretty big already.  New friends at school have started asking me whether we have a little one coming.  I can't really hide it anymore- so here we go- the news is out!  If you see me out and about, you won't have to wonder.  Yes.  We have a tiny rainbow on the way...

Valerie June: A Silly Willy

Valerie is about to turn three.  She is a little munchkin with a sneaky twinkle in her eye! I get to stay home with her three days a week.  We do all kinds of fun things together, like walk to the park, go swimming, dig in the sandbox, etc.  Recently, she started dance lessons at the rec.  It is really fun and new!

Valerie speaks her mind no matter what.  ("Mommy, that is a big no no.  And you might need to go to time out if you do that!" -referring to me trying to put on her pajamas.)  Valerie loves attention, and she is very active!  Her favorite game right now is to tie a shoe lace to her scooter and pretend it is her dog.  She takes the scooter-dog for walks every day and feeds him too.  She also likes playing with her little toy school bus and taking her toy people around the house in there.  Enjoy these photos of my little sidekick:

Hours upon hours in the new sandbox Kabir built.

Baking cookies on a rainy day.

"Dad, I am focusing on this right now, so don't distract me ok?" (This is seriously what she said.)

Spoon lick.

Shy?

Proud!

Happy!

3 Months Now

I am back at school full swing, which is fun and challenging!  My favorite class is microbiology, since we get to learn about all manner of infectious diseases and we get to use microscopes every day (read: nerdtastic!)  We each have to present one disease to the class, and I requested to present CMV.  I explained to the professor that my baby died of that disease, but then I regretted telling her so much personal information.  It's a strange thing to tell people "my baby died." . . It is an overwhelming aspect of my identity, but it is also extremely personal and sometimes makes other people feel awkward.  I think it is something I will try to keep to myself a little better from now on.

Kabir, Valerie, and I are adapting to the new challenges of such a busy schedule.  Sundays are our essential "family day" when we all get to be together for an extended period of time.  We go to the pool or play at the park, or simply hang out lazily around the house.  Sometimes we get sucked into house projects like painting or landscaping, but usually our Sundays are pretty relaxed.  Valerie turns 3 next weekend, and she is getting really excited about having a birthday party!

It's hard to believe that it has been 3 months since Evie died.  She would be 6 months old on September 18th.  Sometimes I think about what we might be doing together right now- snuggling, nursing, laughing, playing.  Evie might be sitting up and giggling and gurgling by now.  Maybe tasting her first carrots.  I miss her and often I dream about her- that we are together like nothing ever happened and she had been born just fine.

One thing I am grateful for that Evie taught me all about is the ability to reach new depths of emotion that I hadn't before.  For example, I now cry almost every time I listen to the news. . . World events are incredibly appalling.  I feel such deep empathy for those who experience loss.  On the surface, it might be annoying to break down and feel so saddened for an hour or two after hearing the news.  But when I sit and let myself feel pain, I realize that this depth of emotion and depth of empathy are really beautiful human things.  Basically, I feel more human than I did before losing Evie, and I think that is good.

Two sleepy-Sunday-monkeys

Faux mustache

Very nerdie selfie of me in my new scrubs for CNA class.

Nursing

Every time I sit down to type these days, I invariably end up writing about my sadness and pain. . . but today I am determined to share something other than depression!  In truth, there are some things going on that bring me full joy in spite of all the heartache.  The biggest joy is the prospect of becoming a nurse! I have now enrolled in prerequisites at Front Range for the fall; plus I will take a nurse aide course.  In the spring, I'll get a job as a CNA while I apply to Regis and CU.

Some friends and family have expressed concern about this dramatic move so soon after losing Evie.  I am grateful for those who challenge me to think deeply about it.  Here are some questions posed to me and some thoughts I have in response:

Aren't your emotions too raw to make such a life-changing decision as switching careers?
Yes and no.  I realize that this goal of nursing might be a way of filling the void in my heart.  I also realize that I am lost and unsure of my identity.  I am sometimes unstable, prone to tears at random times, and distracted.  These emotions are the exact reason I set this goal for myself!  One thing I know about me is that I thrive on intellectual challenge and I love learning something new.  I don't do well sitting at home and contemplating myself and my emotions. . . I want to get out and do something.  I want to reinvent myself.

You absolutely love teaching right?  Why leave that behind?
What I love most about teaching is serving disadvantaged kids- boosting them toward success and valuing them as individuals.  I view nursing in a similar light.  I still have much to learn about the career options out there once I graduate, but I know I will find something that fulfills me to the core.  I will have a chance to value & help disadvantaged individuals.  Perhaps I can even go into public health- something like planned parenthood or another clinic that serves people who might otherwise not have access to healthcare.  After spending so much time with the doctors and nurses in the NICU, I am enthralled by the human body, and I can't wait to learn more.  I love the idea of providing physical and emotional care.

What about having another baby?
It hasn't been long since Evie died, but I would be lying if I said I didn't desperately want a baby again.  It is a tangled bundle of desires: Do I want a baby or do I want my Evie?  Are we ready for all the apprehension of being pregnant again?  Is my "biological clock" ticking?  What if the pregnancy goes badly again?  What if we don't even get pregnant?  . . . If I had to pick between having a baby and going back to school, I would pick having a baby.  Definitely.  But the anxiety surrounding getting pregnant threatens to overtake me!  So I am going to do this nursing thing, and maybe we'll get pregnant too.  If that happens, we'll reassess.

As I type all this out, I am sitting here feeling flooded with love for Kabir, who stands beside me through my crazy impulsiveness and loves me and holds me up no matter what.  This man is a gem.

Dichotomy

Yesterday I was sitting in a cafe watching a mommy cradle her tiny baby.  She was smiling and holding him close, rocking him gently.  I felt my usual sadness and longing.  I could not look away.

Then I heard a loud sound, a guttural cry.  I looked to the very next table and saw two parents with their older child.  She had a helmet on, and she was nonverbal- crying out and banging her hand on the table. She rocked from side to side and her mommy was rubbing her back.  It's hard to explain the way I felt after noticing this other child.  Was it relief that I am not faced with that challenge? Yikes.  Then it was guilt.  As I sat and reflected, I became interested that I was faced with those two pictures of life back to back.  My grief moved and shifted inside me a little bit.

Then Valerie broke my meditation.  "I'm all done with my chocolate milk!"
"Ok pumpkin," I said, returning to the life at hand.  We stood up and left the cafe.

Tricky Things

Seedlings
It was so heart-wrenching to watch my garden sprout and grow while my baby didn't have that chance.  Why do they get to start small and make wonderful progress day by day?  How is that fair?  I pour my love into those veggies, but it hurts.

Pregnant Women and My Empty Body
I cannot look away from all the glowing and beautiful pregnant women I spot out and about. . .  My longing is so very deep. Meanwhile at home I look at my tiny, empty breasts and my still-poochy abdomen in the mirror and feel disgusted by the failure that is my body.

Certain Places
The mall, the library, and the park are places with a very high concentration of newborns.  I notice them and mostly look away.  Sometimes I feel like I don't belong in those places and shouldn't even go.  I wonder where I might belong now?  I tried going to visit the NICU, since that was practically my home for so long.  People were very happy to see me and hugged me, but I felt physically sick.  I could barely even look at them. I wanted to go to Evie's room so badly, just to make sure she was really gone, but there was another baby in there, and I decided it would be weird to ask.

Sometimes I just cannot escape feeling really dark and awful.  It helps to close my eyes and fantasize about the woods or a meadow or a rocky shore.  If I am feeling really, really bad, I imagine the wind howling and pushing on me, my hair whipping and my arms spread wide.  Or I imagine salty waves crashing on me and knocking me under the sea, where I tumble on the sandy bottom. 

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 . . .

Sometimes, This is How it Goes. . .

Evie is sicker than ever and is in danger of dying a sudden, painful death.  Her viral count has shot up to ten times her level at birth, which explains her new and worsening symptoms.  On top of that, her doctors discovered some very dangerous swollen veins in her esophagus, which could rupture easily and cause Evie to bleed to death.  These veins could rupture from eating, coughing, or vomiting.

At this point we’re not sure whether there is any solution for Evie.  She cannot have the veins removed because her platelets are so low that she would bleed out from the procedure.  She cannot have more antiviral medicine because she would again suffer deadly side effects on her liver.  There is an experimental drug that might reduce the viral load, but would likely have deadly effects on her kidneys and bones.  And even if we were to reduce the viral load, it is likely that Evie would still be extremely sick anyway because of all the damage already done to her body.

So we are considering terminating treatment . . .

I am still trying to find words to express everything right now, but the words don’t come.  I am sorry.  Please know that at least Evie is comfortable right now.

Here is Evie, peacefully resting this morning.

A Scary Bad Dream

Last week I was researching CMV online again, looking for cases similar to Evie's, trying to find an end to the story.  I came across a medical description of a baby born at 32 weeks with acute infection similar to Evie's.  The baby died soon after birth.  I saw a link to a picture. . . and I clicked it.  There was the photo of this dead baby with a black strip over her eyes.  It was a haunting image.

That night I had a dream that I was pregnant with three babies. One was Sage, the baby I lost in a miscarriage.  One baby was Evie, sick with CMV.  The third baby was the baby from the website, alive but very sick inside my tummy.  I went into labor and felt excruciating pain with each contraction.  I suddenly realized that the only way to keep all three alive was to deliver the third baby but keep Sage and Evie inside. . . . I pushed and screamed and pushed and screamed and delivered the third baby.  As soon as she was born, I woke up.

I lay in bed covered in sweat and shaking.  My face and pillow were soaked with tears.  It was a scary, bad dream, but you know what? It is reality too.

Downturn

A Downturn
On Saturday night Evie began throwing up and got a fever near 102 degrees.  Leading up to this, Evie's temp had been running high, she had an increase in oxygen requirements, her face got a little more puffy with fluid, and her skin rash got a little darker.  Evie required platelets twice yesterday and has also required more red blood cells.  Clearly Evie is doing worse than she has in a while.

After all these new/worsening symptoms, Evie's doctor decided to stop her feeds and put her on an IV to give her digestive system a rest.  He ordered bacterial cultures of her urine, trachea, stool, and blood.  All of these have come back negative so far, but it will take until 1am tomorrow to fully evaluate the cultures. The doc also sent a urine sample to check her CMV viral count. While they are looking into possible bacterial infections, Evie's doctor thinks the likely cause of this downturn is that the CMV is kicking up again. . . pretty scary.  There is not much they can do to treat the virus directly anymore, since Evie has suffered major side effects from the antiviral drug.  So I guess they are just going to have to watch, wait, and support her body systems as best they can.

My Daughter is Taking Viagra?
Before this downturn, Evie was evaluated by a cardiologist, who did a very thorough ultrasound of Evie's heart and lungs.  When Evie was born, she had high blood pressure in her lungs, probably due to CMV-related pneumonia.  We now know that she still has this "pulmonary hypertension." Luckily this is treatable, and Evie is on a new medicine to help- Viagra!  I bet you never knew that Viagra was originally developed to treat pulmonary hypertension- It then became famous for it's side effect! It was great to have a little laugh about the fact that my baby daughter is taking Viagra.  It was a relief to know about this contributing factor to Evie's breathing troubles, and a bigger relief to know there is treatment for it.

Bottom is Healing, Pain is Alleviated
I want to let everybody know that Evie's raw bottom has finally scabbed over.  The solution was no diaper for two days straight and continuous oxygen blown on her bum.  It also helps that Evie is on IV nutrition instead of milk, so she is not producing any stool right now.  To help with pain and discomfort, Evie's nurses can now give her morphine if she is unhappy.  I am so glad she can rest peacefully now!

Other Resources?
I have just come to the realization that it may be helpful for Evie's doctors to get in touch with other doctors and CMV specialists outside their network. . . this case is just way too strange and prolonged! So far they have done a marvelous job consulting with the numerous neonatologists in their practice, the head of infectious disease, pulmonology, cardiology, and gastroenterology- but these are all within the Denver area.  Last night I heard that one of the docs will consult with a congenital CMV specialist from Stanford.  I am so glad he is reaching out!  Tomorrow I will ask whether there are other external resources they could tap into:  Is there a nationally recognized CMV hospital?  Are there other national experts who have seen something similar, and could offer support? Luckily, none of Evie's docs are too proud to seek out help if they need it- so I am feeling hopeful that they will tap into any resources possible and communicate openly with me about anything they learn.

Wound Care and Other Updates

Wound Care

Why wound care?  Evie has a HORRIBLE diaper rash! It has been getting progressively worse, and the nurses have been trying everything they can think of to help her- creams, ointments, powders, and 100% oxygen blown at her bottom for hours at a time.  No matter what they try, Evie's skin keeps breaking down, bleeding, and even sluffing off- poor, poor baby!  She is in pain.

Today we had a nurse who worked for 2 years in wound care, and she brought in some sticky fake skin to adhere to the affected area.  She also gave Evie some morphine while she cleaned the wound really thoroughly. Luckily she will be with Evie for 3 days straight, so there will be some consistency in her care.  I hope this nurse's experience and ingenuity are the ticket to healing that bum!

Lungs

Evie has been on a ventilator for the full 10 weeks since she was born.  We know that her swollen liver is preventing her lungs from expanding fully: On the X-ray you can see it taking up a full 2-ribs-worth of lung space!  We also know that her lungs and trachea are affected by the mere fact of having been on a ventilator so long.  The tube caused a bacterial infection which is gone now, but the tube still causes her to produce lots of mucus.  On the positive side, her trachea is not swollen around the tube, and her ventilator settings are overall pretty good.  A lung doctor will visit Evie this weekend and take a look at her chart/x-ray as well.  We can't wait to hear what she has to say. . . so stay tuned for another update on the progress to breathing on her own.

Here you can see the dark red liver of an average adult.  Imagine if it was swollen 2 ribs higher!

The Virus

None of Evie's doctors have seen such a long, drawn out case of CMV disease.  Her liver and spleen are still gigantic, and they are still chewing up platelets at an astonishing rate.  She needs platelet transfusions every third day on average, and that is just to get her at one eighth the normal level.  The virus not only causes platelets to get trapped and chewed up, but it suppresses their production by the bone marrow.  Also, Evie's doctor said that the antiviral medicine probably made things worse by affecting the bone marrow too.  Fortunately, a hematologist confirmed last week that Evie does make a few of her own platelets, so her bone marrow at least works a little, but there is a long, long way to go before she'll stop needing transfusions.  Could it be weeks?  Could it be months? We cannot know.  As far as I know, there is nothing they can really do except support her with good nutrition as her body fights and fights.

So yeah, the outlook right now is somewhat bleak, and I'll confess that I have been battling some depression lately.  (This of course is evidenced by the last two entries.)  I asked the dreaded question once again- Is there a chance Evie could still die from this? The answer- highly unlikely.  But it will be a long time still in the NICU, and her brain will probably be affected forever.

The Trouble with Hope

Spring Time Bright Green 
(This is the water droplets' saga)
-By Kaylie

The trouble with Hope is that she gets beaten down and crushed- Sometimes she dies. . . I foolishly pinned my Hope on steroids for Evie, thinking they would strengthen her lungs and reduce the swelling in her liver and spleen.  After three doses, we had no such luck, and Hope got crushed again.  Now Evie's doctor will stop the steroids and consult with a pulmonologist (lung doctor) to try and figure out how to get Evie to breathe on her own.  Do I dare Hope they solve this soon?

I am at least happy to report that Hope has two sisters that can help, Patience and Love. Patience has seen us through the past 9 weeks, and she promises to stick around for months, if that's what it takes. I need to remember her when I'm getting dejected!  Love is quiet and sneaky, and she jumps out in the nick of time!  Today she gave me a wink when I held Evie and gazed at her beautiful toes.  Then Love smiled at me when I traced my pinkie across Evie's perfect lower-lip.  Thankfully, Love helped me fend off Despair today.