New Normal

Evie with her beautiful eyes open- She followed Kabir's  hand this morning as he passed it near her face!

Here are a few things that I never knew would become normal. . . 

1. I feel deeply connected to people I barely know at all.
I get on the elevator and see a parent I recognize from the NICU.  No words are exchanged, but we exchange looks of compassion and knowing.  We silently wish each others' babies well.

2. I am tired.  Really tired.
No, I don't have a baby at home keeping me up at night, but instead I have this weight on my chest of worries, and that can be tiring too!  Sometimes I'll go to the store and it will take a whole hour to buy three things.  Sometimes I only vacuum five stairs before I feel like lying down.  Exhaustion is normal for me these days.

3.  I accept (lots of ) help.

We have accepted rides,  dinner,  gift cards, childcare for Val, help with house chores, money, help talking to doctors, shoulders to cry on, and much, much more.  At first it was hard to depend so heavily on others, but now we are just very very grateful for all that support!  Much of the help we get is from people we barely know but who care about us anyway. Thanks, all you helpers out there.

4. I rely on nurses for almost everything.

On Sunday Evie had her first real bath.  I was sooo grateful for the nurse who held her tubes and told me exactly what to do and how to do it.  (I wish I had a picture to show you- Evie's eyes were giant saucers of shock when we set her in that little pink tub. . . now she is nice and fresh and I feel a lot better.)  Thank you nurse Mel!!  Caring for a newborn is tricky, but caring for a sick preemie in the NICU is impossible without the help of all those kind, experienced, wonderful nurses.

5. Life keeps going.

Valerie is potty trained now and sleeps in a big-girl bed.  My dad filled our garden beds and planted the lettuce and peas.  Kabir is busy at work.  Actually, life just keeps on going!  The desperation I felt during the first couple of weeks in the NICU has subsided.  I now have a new sense of normalcy.  For instance, my co-workers threw a baby shower for Evie, and it felt so good to have a "normal" baby day like that!  I have also been nesting (see nursery pics below), which feels good and normal too.

Reading nook in Evie's nursery.

Evie's crib and Cirque du Soleil mobile.

Brain MRI Results

Small Lesions, but No Prediction of Outcomes

We met with a neurologist yesterday afternoon to review the results of Evie's MRI.  The results showed some small, dark lesions scattered throughout her brain (probably calcifications.)  He could not say what this might mean for Evie's long term development, but he described how he will follow up with Evie over the next few months to check for any neurological issues. So far we have not seen any signs of seizures or abnormal muscle tension (cerebral palsy), and Evie moves all her limbs normally.  All encouraging bits of information!

The neurologist also took a look at Evie to check her reflexes, measure her head, and take a peek at her eyes.  He said things looked pretty normal for her being at about 36 weeks gestational age.  Evie's head is in the 20th percentile, which is not concerning, but he'll watch to see if it continues along a normal growth curve.   When Evie comes off the ventilator, they can check her hearing as well.  We can start working with a NICU occupational therapist at that point too so we can support her brain function as much as possible.

At first I looked forward to this neurology meeting with lots of apprehension because we thought we'd get a better idea of the long term outcomes for Evie. . . Now Kabir and I realize that even a brain scan cannot predict for us at all whether she'll be severely affected or mostly okay- It will be up to Evie to show us month by month!  The neurologist explained that he has see children grow perfectly normally with this same level of damage and kids grow up with major issues as well.  Right now we are still feeling hopeful about Evie and her long-term outcomes. . .

Goals for Evie's Body

Evie's body still has a ways to go for healing: We want to see her liver and spleen shrink back down to normal size, which could take some time.  If Evie's liver swelling goes down more, she can probably come off the ventilator in a couple of weeks (or maybe more, we'll see.)  Right now she has too much trouble expanding her lungs due to that liver.  We also want her spleen to stop trapping platelets- Evie still requires platelets every other day!

Kabir and I thought Evie might be ready to come home by her due date, May 18.  Now we realize that it might be quite a bit longer than that. . . It's hard to readjust our expectations, or get rid of expectations all together.  We'll just have to focus on the day-to-day healing.

Thanks again for all the love and support on this strange journey!

Thinking vs. Feeling

Here is a picture of me holding Evie earlier this week:  

On the left is Chet, my father-in-law.  On the right is my dad Phil.  When I need support with my feelings, I go to Chet, because he is a master of balance and spiritual energy.  When I need support with my thinking I go to my dad because he is a master of intellectualism and critical thinking.  This photo is a perfect metaphor for my struggle to balance feelings and thoughts about Evie.

Thinking is an Escape from Feeling

Sometimes it seems like Evie is my patient, and not my daughter.  I constantly meet with nurses and doctors to get updates, ask questions, offer suggestions, etc.  Heck, I even have my own chart on Evie where I track almost all the same data that the doctors track! Today I spent half the day researching brain anatomy and possible effects of CMV on the brain.  I learned approximately 50 new words in a matter of three hours- words like "white matter," "glial cells," "periventricular calcification," and so on. I wanted to be prepared for our conversation tomorrow about Evie's MRI results.

But maybe all this thinking, all this time I spend in my head, is a defense against feeling?  If I let myself go into feeling, or spend time in my heart, I know the feelings that come up will be anxiety, sadness, grief, guilt, and even terror at the situation.  For now, thinking must be safer.  Thinking might even be helpful because it could lead to better medical care for Evie, right?

Guilt

Even by spending time thinking instead of feeling, I cannot escape guilt.  This guilt is really complex, and starts with regret about decisions I made before Evie was born.  Why didn't I say something sooner when I wasn't feeling much movement?  Why didn't I do a better job of protecting myself from germs/infection? I even wonder whether our decision to get pregnant so soon after a miscarriage affected Evie's health- Aargh!  Those thoughts can drive a person CRAZY!  (I am no stranger to those thoughts though, because I still have lots of thoughts like that about Kaylie, my friend who committed suicide 3 years ago.)  This part of my guilt will hopefully subside over time. . .

Besides regret about decisions I made, I also feel guilty about all the time I spend in my head instead of in my heart . . . I know a lot of people who are really in tune with Evie and feel a deep connection with her being.  I am her own mother, and I do not feel things that way.  Whether it's a defense mechanism or whether it's just how I am wired, I am having trouble bonding with my baby girl.  I know that deep down I love Evie intensely, but for now the only way I can express that love is by thinking critically about her disease and supporting her medical care as best I can.  I am praying that once I hold her at my breast and get to be alone with her for hours at a time I will feel that connection with her being that everybody else keeps talking about.  Maybe then this guilt about thinking vs. feeling will go away too.

(p.s.) I should mention that immediately after this visit by both grandpas, Evie's liver counts got way better!!  I know this was mostly the result of taking her off ganciclovere, but I think grandpa love helped too!!

(p.p.s.) Kabir got to hold Evie yesterday for the first time!  She was SOO comfy and fell asleep right away!

Go Evie Go!!

I decided to name this post after Valerie's new favorite show "Go Diego, Go!"  (See cute little Diego, pictured below.) Only these days we are mostly cheering for Evie- Go Evie, Go!!
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Great News on Evie's Liver!

I spent Monday night researching liver failure online and crying, crying, crying.  I had discovered that liver failure means death for babies in many cases.  How terrifying!!  So I looked up every cause of liver problems in neonates I could find, and then I spoke with Dr. Horst on Wednesday:

"You mentioned that livers usually heal quicker than this with CMV.  I know the specialist came by this morning. . . so what is causing Evie's liver to get so bad?" I asked.  "Is it possible that one of her medicines is having a side effect on the liver?"

"Geez," said Dr. Horst.  "I am trying to keep a day ahead of your thinking!  Actually, we just decided to take Evie off her viral med this morning, since it can cause side effects on the liver in extremely rare cases!  We'll know in a couple of days whether this hypothesis is right, because her liver counts will get better once the med is out of her system."

Well, the hypothesis was right!! Now that Evie has been off Ganciclovere for 3 days, all of her liver counts are improving . . . phew!  Bilirubin is down, other enzymes are down, and even the swelling is down on her belly.  Also, today was the first day Evie was not bright orange with yellow tears or yellow saliva.  That liver is going to heal! Go Evie, Go!

Brain Scan on Monday

Evie has had 4 weeks of the prescribed 6-week course of ganciclovere.  Remember, this antiviral helps fight the CMV, has been shown to reduce the risk of hearing loss later in life, and may even decrease the chances for mental disabilities.  However, it is not worth the risk of causing liver failure to keep Evie on it.  I am very happy with the decision, and I also realize that I don't care what disabilities Evie may have. . . I just want her body to be ok!

On Monday Evie will get a brain scan (MRI) to try and get an idea what, if any, brain damage has occurred as a result of this infection.  So far, doctors have discovered 2 or 3 tiny calcifications in the motor/sensory area of Evie's brain.  (These were discovered via ultrasound when Evie was 2 weeks old.)  On Tuesday we will meet with Evie's doctor and a neurologist to review the MRI findings.  We are cautiously optimistic that they won't find much damage to Evie's brain.  We appreciate any more good Ju Ju you all can send our way!  (It seems to be working for us!)

I will post again with the brain scan info next week.  Remember, no matter what they find, Evie could meet all her milestones as a developing baby and end up ok!  Don't give in to fear and worry, just hold tight to positive thoughts.  (I think I'll have to re-read that last sentence myself a few times again before that meeting on Tuesday!)

Confessions

In no particular order:

It was really hard to visit Evie at first because it felt like she was somebody else's baby.  Sometimes I still feel that way.

I am terrified that Evie will be severely handicapped. . . mostly because I don't know anybody who is really handicapped, and I don't know what it would be like.

I desperately want to go see every other baby in the NICU.  Why am I so curious?  Why do I want to compare? I don't know.

I'm scared that Evie won't learn how to nurse.  (I know she will learn to eat, but breast feeding is really special/important to me.)

Sometimes I am really scared Evie will die.  I worry about that at least once a day.

I want to know everything about CMV, and I also don't want to know anything at all, because the possible long-term outcomes scare me.

I want to meet the other mommies I see in the NICU, but I am too scared to introduce myself.

I've cried in front of Valerie June WAY too many times.

When Evie comes home, I will not be away from her for even 2 seconds!!!  She will sleep in our room until she hits puberty I think.

I don't want people to ever stop praying for Evie, even when she comes home, even when she is super healthy. (And she will come home!)

Bittersweet

New Specialist
Today I spoke with 2 of Evie's doctors, and they both agree that it's time to bring in a specialist to evaluate Evie's liver.  The CMV infection might not be the whole story there. . . typically the liver heals more quickly than Evie's, especially after 4 weeks of the antiviral medicine.  Since Evie is still so fragile and sick, they cannot do a biopsy of her liver.  I am really hoping they can figure out the problem by looking at her blood work.  I am also really hoping that whatever they find is easily treatable!!!  I am scared.

Failed Attempt off Breathing Tube
Also today, Evie's breathing tube was taken out around 1pm.  The doc put oxygen on a nose tube for her and we watched to see how she did.  Unfortunately she was heaving and heaving pretty hard and not quite able to breathe well enough- At 4:30 they decided to re-intubate her.  I wasn't really too disappointed.  (I already knew she wasn't quite ready. . . )

Mommy and Baby
The best part of the day was when I got to hold Evie for a whole hour before they took her off the ventilator.  I watched as she melted into my arms and fell peacefully asleep.  I put my finger in her hand and she grasped it. I gazed at her.  I cried and cried like an idiot.  It was a glimpse into the future, when I will get to hold Evie and gaze at her in my arms all the time. . . So bittersweet.

Progress & Goals

With every ounce of progress we are closer to the day Evie can come home!!

Here is a wonderful drawing of our family by Valerie.  Notice that every person has earrings and a necklace (two lines coming out of the faces.)  Valerie also tried writing our names (blue scribbles near each head.)  Below is the current status of Evie's progress and goals for healing.

Progress

• Evie is now receiving full fortified breast milk feeds down into her tummy!  This means that her digestive system is healthy overall.  Feeding will also help her liver recover little by little.

• Evie is breathing very well, and may come off her ventilator in the next couple of days!!! (Trying no to count my chickens before they hatch. . .)

• Evie's neutrophils (white blood cells) have come up from zero to 320.  The normal count is 1,500 but her doctors will be very happy if she reaches 500.  This means she gets to stay on the antiviral med which prevents hearing loss.

• Most important:  Evie acts more and more like a healthy little baby: She yawns, stretches her arms way up, and even turns her head.  She loves to suck on her breathing tube and hands- She's practicing for the day she gets to try a bottle!  Today she grasped her little ear while she slept- adorable.

Goals

• Evie is puffy again due to the virus causing fluid build-up . . . poor thing looks like Jabba the Hut's baby!  She is on an oral med that will help, but we want it to go down on it's own to prove that the virus is subsiding.

• Liver, liver, liver.  Evie's liver enzymes are way too high, she needs medicine to help her produce bile, and her body is bright orange due to bilirubin build-up. Evie's liver is very enlarged which affects her ability to breathe on her own, and may contribute to her spleen swelling/trapping platelets.

 

Here is little Evie.  April 10th.

Here is our "healing wall" in Evie's NICU room.

This is Evie's "crib" and all her robot friends who help her heal.

p.s. Valerie is potty training!  Jelly beans help motivate her to practice sitting and even go in the potty sometimes!

A Great Day: Facebook Update 2

Evie got to switch to a normal ventilator! (She had been on a high-power oscillating ventilator which is pretty uncomfortable, but her blood pressure is now holding steady, her urine production is way up, and the swelling is going down- so they switched her!) Also, Evie got her first little bit of mommy's milk put into her tummy today! Last, Evie's viral load is down to 18,000 from 81,000 at birth, which is also great!

Evie's First Breast Milk!

She still has a long road to go. Her white blood cell count is very low due to the antiviral medication. Her doctors will give her some medicine to try and boost the white blood cell production over the next week- if it doesn't work they'll have to take her off the antiviral med. Please pray that those white blood cells get made!! We want her to get the full 6 weeks of that antiviral med to help reduce the risk of hearing loss later in life!

Evie seems more and more like a healthy baby day by day. She yawns and stretches and even has little hiccups from time to time. Now that her swelling is going down, her features are easier to see. . . and she looks so much like Kabir!!! I LOVE HER SOOOOO MUCH!!!!!

Still Very Sick: Facebook Update 1

March 30, 2013

Evie is still very very sick, and we thank you for your continued support and prayers. She has made some progress in that she requires fewer transfusions now and her liver and spleen are recovering. We found out yesterday that the virus has not affected her eyes- which is great news! Evie's doctor sounds pretty certain that Evie will survive, but there is no way to predict whether/how Evie will be disabled after the infection subsides.

For now, Evie's body is very swollen since the virus causes fluid to build up under her skin. She gets red blood cells, IV feeding/fluids, and platelets regularly. She also gets medicine to support her blood pressure, urine production, and comfort level. She still is on a high-power oscillating ventilator. She is still on her anti-viral drug, gancyclovere, which slows viral reproduction and decreases the chance of hearing loss.

In the short term, we are praying for her blood pressure to stabilize so that she can switch to a more comfortable ventilator. We are also praying for a decrease in fluid (edema) under her skin- which would signal better urine production and a lower viral load.

It is easy to get sucked into fear and worry, but we are trying to stay positive and stay informed! 

Stars Align

Evie's Birth, Part II  (March 18, 2013)

So I was going to have a c-section.  Before we knew it there were 3 doctors,  3 nurses, and 1 anesthesiologist prepping me for surgery.  I got a catheter and a shave within minutes.  I got magnesium in the IV to reduce the risk of effects on Evie's brain/nervous system from an early delivery.  The magnesium made me feel terribly hot, and yet I was shivering in fear. . . In another 2 minutes we were rolled into the operating room where I got a spinal block.  I was laid on my back and I promptly went numb from the chest down.  Kabir sat near my head.  Dr. Moeller put up a big blue screen and set about her work.  It was go time.

Here's how the stars aligned for Evie:  By chance, a superb neonatologist named Dr. Horst happened to be staying late at Avista after a meeting.  Unbeknownst to me, my OB was able to track him down just as he was walking out the door.  He came to the OR and was ready to help Evie the minute she was born.  Also by chance, our wonderful pediatrician, Dr. Steitz, was finishing up some paperwork in his office downstairs.  He came running up to the OR to assist as well.  We were so incredibly lucky to have these two amazing doctors there to help Evie survive!

Once the C-section began, I looked deep into Kabir's eyes and prayed that Evie would be ok.  Kabir smiled and reassured me (without mentioning the giant cup filling with blood behind my head.)  The second I felt pressure and knew Evie was born, I made Kabir run to her side.  I could hear the doctors fast at work reviving my tiny baby.  At one point I heard a little wimper, and I began to cry- I realized she might make it after all!  Kabir sat by Evie's side where he took a short video clip of her to show me later.  Evie was very, very sick.  Her body was covered with tiny spots and bruises, her belly was swollen like a giant balloon, and she could not breathe without help.  She even got a bruise when the doctors touched her gently with a stethoscope. . . Here is a photo of our tiny, sick little peanut:

Back in the recovery room, I waited in a daze for the feeling to return to my body.  Soon they wheeled Evie in so I could see her before they transferred her to the NICU at St. Luke's.  All I could see was a tiny, tiny face through a window in a giant red case.  I began to sob. . . "Please," I begged, "transfer me to St. Luke's too.  I need to be near my baby!"  Kabir rode with Evie in the ambulance to St. Luke's; and I was transferred within an hour.  The rest of the night was pretty foggy- Did I sleep?  I don't really know.

The next morning Kabir took me in a wheelchair to visit my tiny one.  Little Evie had a million tubes and wires attached to her little body, but she was ALIVE.  And so began Evie's precious life outside the womb. . .

Good Decisions

Evie's Birth, Part I  (March 18, 2013)

Evie's face, 32 weeks

It was Monday and I was at a regular 32-week check-up with my new OB, Dr. Moeller.  After measuring my tummy (normal) and listening to Evie's heart (normal), Dr. Moeller asked, "How are you feeling today Vera?"

"Anxious," I said.  "I have an appointment with a specialist on Thursday to check on my low amniotic fluid, and I am really hoping it has gone up. . . I have been eating, drinking, and resting well.  Plus I've been going to the pool every day."

"Well, I think I have an ultrasound room open.  Would you like to take a peek at the fluid?"- That was good decision number 1.  Dr. Moeller took me to a small room where she squeezed the cool gel on my tummy and turned on the monitor.  "Hmm," She said, "It's still very low- lower in fact.  I am worried because you have been doing everything right.  Let's do a non-stress test."  That was good decision number 2.  She helped me sit in a chair and hooked up a fetal heart monitor which spit out a long chart with little squiggly lines.  Twenty minutes later she came in to check those squiggly lines: "Hmm.  This looks OK, but baby isn't really moving too much.  She even had on little drop in heart rate. . . I think we better play it safe and have you check in to the hospital for IV fluids, rest, and monitoring."  There was good decision number three.

Two hours later I was hooked to an IV and getting a very thorough ultrasound by a radiologist.  Kabir and my sister Val were watching the screen as intently as I was.  Dr. Moeller and a colleague began explaining that there is a 10-point scale of fetal well-being, and Evie was at a 2: Low amniotic fluid was 2 points off; low movement was 2 points off; dropping heart rate from time to time was 2 points off, and her liver looked a little swollen which meant another 2 points off.  At a 2 out of 10, it was time for Evie to be delivered.

"You will need a C-section as soon as possible," Dr. Moeller said.  That was good decision number 4.  These 4 decisions saved Evie's life.