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.

Namesake

Kaylie

Any words I put down here won't do justice to the enigma that is Kaylie. . . How fitting that we should pick that middle name for Evie and then she would be born to face such a storm!  Evie is a credit to her namesake because she is perfect just how she is, no matter what anybody might think.

Kaylie Helene Hushka was my best friend, and she died young of bipolar disorder.  When I think of her, the words that come to mind are: hilarious, creative, loyal, afflicted, and courageous.  I think everybody who knew Kaylie loved her deeply!

My favorite memory of Kaylie is when we were little girls and we went off to play in the woods on a family camping trip.  We took off all our clothes and jumped into the freezing river. We spent hours that day exploring as we trekked against the strong, frigid current in that river. . . We collected shiny rocks.  We made fishing rods with sticks and shoestrings.  We jumped from precarious rock to precarious rock.    For me, all of childhood can be summed up by that day playing with Kaylie.

I miss you, friend.

Slow going

There isn't much changing these days, but I thought I should update friends and family anyway. . . 

Evie is still on a ventilator and still requires platelets every third day.  Her belly is still very swollen making it hard to breathe on her own.  She has had two UTI's which were treated successfully. Now she has a minor bacterial infection in trachea, which will further delay coming off the ventilator.  She is on a week-long course of antibiotics to fight that lung infection.

A hematologist (blood doctor) consulted with Evie's main doctor to discuss whether steroids might be a safe to help out her lungs once she is off antibiotics.  Steroids could also help reduce liver/spleen inflammation, but they can mask other infections and weaken her body's immune response.  The docs won't make a decision until her lung infection has cleared.

Lastly, Evie's infectious disease doctor presented Evie's case at a weekly hospital conference. The goal was to get insight from the broad array of doctors in attendance.  The doctors discussed another antiviral medication for Evie, but they decided the side effects on the skeleton are way to risky to try that medicine.  Even though this conference didn't result in any epiphanies for Evie's treatment, I was thrilled that Evie's case is getting attention from so many good brains!

Holding Evie. . . trying to be patient. . . .

Occupational Therapy

On Thursday I invited an occupational therapist to come help me work with Evie during her care time. It was amazing what we accomplished in just 15 minutes!  Brenda showed me how to reposition Evie's hips so that she could practice kicking a little bit. She also showed me how to gently help Evie round her back a little.  We used rolled blankets and swaddling to help Evie rest in good alignment too.

Evie got overwhelmed quickly, and brenda showed me how to read her cues. . . But before she got overwhelmed, she found her hand and watched it as it moved around near her face.  She also followed me as I moved around her crib and spoke softly to her.  She is more alert every day!