11 pounds!

Niko is now 11 lbs 5.5 oz to be exact.  She’s come a long way. 

Well I've been cheating a little.  Three times a day, I give her a bottle of my expressed breastmilk with added formula.  I mix one scoop of formula to 80ml of my milk.  Initially I thought that was going overboard.  But the doctors were threatening to tube feed her through her stomach if she didn't gain weight.  And her pediatrician recommended adding formula to my milk.  So I'm giving it a shot.  I started with one bottle a day and slowly increased it.  She's definitely plumped up and she finally has cheeks.  I'm really enjoying her new soft rounder look.  She looks and feels like a solid baby now.  She used to feel so fragile and limp.    

Let’s show off some of the things she can do now.  I know that these milestones are no big deal for “normal” babies.  But for Niko, each movement is huge progress.  I’m so proud of her. 

She can transfer toys from one hand to the other.

She can roll to her right side from her back. 

She no longer looks like a rubber chicken.    

You've come a long way baby!

22nd of October 2012

An important person to us just passed away.  This hurt more than I expected.  He had battled a rare form of cancer for over 7 years.  I won't mention his name or his relation to us because that was one thing he requested.  He didn't want his passing to be announced in any form.  So I'll respect that.

He left me this note about courage.  Of the many kind words I've received about Niko, these words resonated with me.

"Your heart must break many times a day. 

From here on, it's all about courage, for courage will give you strength. No point fretting about miracles, wonder cures, medical breakthroughs.  That will take away your strength.  What's in your hands is loving, and there I feel your total commitment."

Some things make me happy…...

… like this video sent to Kiril from his German client.

 

I know this is rather random, but this made me laugh so hard that my face was covered in tears (the good kind) and my stomach ached like I've completed 50 stomach crunches. And I've not laughed like this for a while.

Physical Therapy

We went in for a couple physical therapy sessions at our hospital.  I really liked our therapist.  She talked with a lovely deep earthy voice and had a firm and secure touch.  She really worked Niko all around.  She stretched her limbs in all directions and placed Niko in many different positions.  

I didn’t realize until now that I hardly move Niko around at all.  Then I started to feel like a bad mother.  In general I don’t push her at all.  She doesn’t ever exert herself physically, and therefore I am not in the habit of exercising her.  When older sister Mila was a baby, she was so extremely active that I found myself chasing after her all the time.  I never had to encourage her to move around.  So now I have to remind myself all the time to help Niko use her various muscle groups to develop strength with the goal that she may enjoy some independence in the future (like sitting up or rolling over).

Because Niko hates tummy time I never place her on her stomach.  The physical therapist showed me other options that would not be so taxing on her spine while engaging the same muscle groups that tummy time would exercise.  

Here are alternative options for tummy time.

I learned a bit about Niko’s current body limitations.  She has stiffness of her arms and can hardly move her arms up to touch her head.  Her knees and ankles are also stiff.  The physical therapist advised me that to help Niko flex her feet.  Because she will not be placing her weight on her feet, they can eventually stay into a pointed position forever.  

So far Niko never uses her hands or arms.  So I've never bothered buying her grabby toys.  And in her first physical therapy session, she was able to transfer the toy from one hand to the other.  Again, I felt like a horrible mother.  The weight of her condition made me forget that I should actually treat her like a regular baby.  So I went out immediately and bought her some toys.   

Physical therapy for a five month old is not very exciting, but here are a couple videos.

Sleep Study

Last Friday, Niko and I spent the night at the hospital to conduct a sleep study.  As I have mentioned before Nikola is a horrible sleeper.  On good nights, she wakes up every hour.  On bad nights, she wakes up every 10 – 30 minutes.  The ultimate worst night was in Santa Fe when I was out of my bed, shushing her, rocking her, and singing to her from 12:30 am to 5:30 am.  She cried for five hours straight that night.  She’s also not a good napper during the day either. 

I have not had any real sleep for over five months now.  But poor Nikola, she’s just a baby.  She needs the sleep more than I do. So we decided to do a sleep study to see if we can determine what is causing her terrible sleep habit.

I knew it was not going to be fun.  I’ve read about it.  But it was worse than I expected.  We conducted the study in Kaiser’s sleep lab in Santa Clara. 

The room was decent enough.  It actually looked a bit more like a bare bones hotel room than a hospital room. 

We arrived at 7pm.  The nurses instructed me to fill out the forms as quickly as possible so that we could get started right away.  They informed me that we would be finished by 5am and I would have to clear out of there by 5:30am.  Niko usually goes down for bed at around 6:30pm – 7pm so she was already exhausted. 

I mentioned that Niko is a very poor sleeper and asked if that would derail the study. 

The older nurse said, “Well let’s hope that she sleeps better tonight.  There is another sleep study patient in the room right next to you.”

Me:  “I know for a fact that she will wake up many times tonight.”

Older nurse:  “For tonight, try to make her sleep more.  You don’t want to keep the other patient up.”

Me:  “I’ll do my best.” @%*#!  If I could make her sleep better, we wouldn’t be here. 

While I was filling out the forms, I heard the nurses chatting in the hallway.  One of them said, “hmmm… I-Cell Disease”.  Clearly she was reading Niko’s charts.  The younger nurse said, “Yeah I read about it last night.”  But her voice was so sing-song (and not one that you would use when referring to a terminal disease affecting a baby) that I assumed she most likely glanced over the subject rather than actually reading it.

Then the torture began as soon as I completed the forms.  What appeared to be hundreds of tubes and wire leads were attached to Niko (and certainly not without a valiant fight from her).  She had about 8 leads attached to the top of her head, 4 on her cheeks, 1 on her chin, 1 on her forehead, 5 to her chest, 2 to her stomach, 4 on her legs, 1 oxygen monitor attached to her foot, and a cannula tube inserted in her nose.  Then they wrapped her head with a bandage to keep everything in place.   

Applying a colour filter makes these photos a little less heartbreaking to look at.

Nikola screamed her bloody little head off.  I think the whole wing of the hospital must have heard her.  The younger sing-song nurse said to Niko, “when you grow up, you can remind mommy of this.”  So obviously she didn’t read much about I-Cell last night.  If she had she would know that Niko will not “grow up” to remind me of any sleep study.                

I know that the wire invasion did not cause her pain, but it was absolutely heartbreaking to see her like that.

I swaddled and nursed her and surprisingly she fell quickly to sleep.  I suppose that fatigue overrode the discomfort.  I was hoping that she would sleep long enough for them to gather enough information for proper results.  

But in less than an hour, the nurses came in.  They were concerned that the oxygen monitor was not working.  It showed that her oxygen level dropped down below 80% (while it should be above 95%).  So we removed her swaddle and replaced the oxygen monitor with a new one. 

She dropped off to sleep and then the nurses came back in.  Her oxygen was indeed low.  So they added another cannula tube into her nose.  This new one provided her with oxygen while the other one measured her breath.  The two tubes could not fit into her tiny nostrils so they wrapped more and more tape to her face.  Nikola was so upset and so sweaty.  She was twisting and fighting so much that everything kept coming off, despite all the tape and glue.  It was so difficult to comfort her.  Not only was it hard to find an exposed part of her face to kiss, I had a hard time picking her up due to all the wires.    

Here you can see the two sets of tubes that barely fit into her nostrils.

Watching Niko go through this horrific experience, I keep thinking that this entire ordeal seems so outdated.  No one should have to go through this in 2012 to conduct a simple sleep study.  As you watch technology and equipment improve over the years you say things like, "Remember when mobile phones weighed over 5 pounds?"  Or "Remember when you had to send a telegram for emergencies?"  Or "Remember when sleep studies looked like this?"

  

So the horrible night spent at the hospital showed us that Niko does need oxygen.  I received a call from the sleep doctor today.  He informed me that Niko has central sleep apnea.  Her brain temporarily stops her from breathing during REM.  They saw that she was desatting and her oxygen level dipped down to 74% during REM.  He recommends that we put her on oxygen for sleep, through a nasal cannula, and to repeat the sleep study in 3 – 6 months.  Ugh!  I really don’t want to do this again.    

He told me that central sleep apnea is nothing to worry about because babies will usually improve as they age and become stronger.  I asked if Niko has a chance of improving because she has I-Cell.  And he asked, “What’s I-Cell?”

I’ll wait to speak with her pulmonologist.    

So this might be the beginning of Niko’s career as an oxygen user.  I was hoping to avoid this for as long as we can.  But who are we kidding?  My poor baby.  Why am I afraid of the tubes?  They are here to help her, make her more comfortable.  But all I see are tubes, and tanks, and pumps.  And the equipment scares me.  This sleep study has made me appreciate, and never take for granted, the time that I get to carry Niko without wires and tubes.

This reminds me of the short-lived ridiculous trend of oxygen bars.  In the late 90s, anyone can slap on a pair of high heels and trot to the nearest trendy bar or nightclub to breathe in tropical flavoured oxygen through nasal tubes for fun.  In fact, I’m ashamed to say that one night in my early twenties, I was convince by friends to don a pair of 4 inch heels and insert a half inch hose into my nose at a night club. 

When life makes you confront your fears, thank goodness for stupid trends that make you see the humor in it.    

Happiness is overrated

Happiness IS overrated.  I used to think that in life one must pursue happiness above all other aspirations.  I believed happiness to be our highest achievement.  Now I realize that it’s just an emotion, no more no less than any other human emotion.  Certainly not one that I must depend on.    

I’ve read many articles on happiness.  One that connects happiness with sisterhood, and one that argues that happiness comes with age.  Ultimately I concluded that happiness is measured by longevity.  Many studies suggest that happy people live longer.

For Niko’s sake, I’ve abandoned these theories.  Her life will be unjustly short.  So screw all the articles.  What sort of happiness-privilege will Mila gain from having a little sister who will teach her about death at an early age?  What is to be said about the fact that Niko will never ripen like a good wine?  Am I to believe that she should fall into the extremely unhappy side of the scale because she will not reach longevity? 

Or is she someone who is considered “blessed with ignorance and bliss” due to her cognitive delays?  I don’t dare think about what she will or will not mentally grasp as she grows.

So I’m not thinking about happiness anymore.  Not for a long while.  But I’m not depressed.  I refuse to live with depression or self-loath or hatred for the world.  When I first received Nikola’s diagnosis, I felt nothing but pain and anguish. The pain is still here and it’s indescribable.  That doesn’t get any easier.  But now I have discovered a new emotion, a brand new feeling. 

It’s a new kind of pain, a pain that doesn’t immediately equate to “bad”. In fact I don't even wish for this pain to go away.  I liken this new kind of pain to the sensation of listening to a sad song, a sad song that sings of your heartache with devastating accuracy. You cry when you listen to it, but you listen to it over and over again. You even love the song.  So this new pain is my new normal.  It's my new constant.  It may ebb and flow, but it's consistently here, tinging my maternal love for Niko.  It's been over a month since we discovered Niko's condition.  This new pain soothes me as it bandages the original deep cut.  This new pain is calming, dare I say beautiful.  

 

As long as I have Niko I will feel this pain.  Niko’s condition will not improve. In fact it's the nature of this disease to progressively worsen.  After Niko dies, this pain will be replaced by one that will be “bad”.  So I’d like to hang on to Niko for as long as her little heart will beat, and I’ll hang on this this new pain. 

Recently I heard the words from Adele’s song, Someone Like You and I cried as I thought of Niko.  I know that song is about a romantic relationship but these following words in particular choked me up. 

Never mind, I'll find someone like you

I wish nothing but the best for you too

Don't forget me, I beg

I remember you said,

"Sometimes it lasts in love but sometimes it hurts instead

Sometimes it lasts in love but sometimes it hurts instead”

5 months

Sister time

Santa Fe

We just spent a week in Santa Fe.  We are fortunate enough to visit frequently as Kiril's mom and family have homes there.  That place is magical. The New Mexican state motto is "Land of Enchantment".  And from the first time I stepped foot in New Mexico, I was a believer.  The warm adobe architecture is designed to soak in the supple amber coloured sun that is unique to New Mexico.  The air is velvety and sweet.  The high altitude leaves your soul feeling elevated like a pampered soufflé.  Everything has an inner glow in Santa Fe.  And hence one cannot help but feel an inner glow.  Visually Santa Fe has an unique beauty that sprouts from nature's perfect curves and form.  The town is painted in colours that seduce the eyes; earthy browns and taupes punctuated by turquoise.

Beyond visual beauty, the unique New Mexican cuisine contributes to the enchanting experience by adding heat. Textured heat.  Traditional New Mexican dishes are smothered in chile.  Red, or Green, or "Christmas".

We had a good week.  We got to relax and enjoy the warm autumn air.  We saw family.  We ate.  We slept.  Well, I take that back.  Everyone slept.  Niko and I didn't.

Kiril's mom's house - this might be my favourite house on this planet.

We spent a lot of time in this garden.

I love Santa Fe at this time.  Luckily, we were there for the Fall Chile and Wine Fiesta.  The smell of roasting chiles filled the air.  It's the kind of smell that fills your nostrils and almost chokes you, but in the best possible way.  Smoky, deep, raspy, green, addictive…  Death by roasted chile smoke. 

Unfortunately I couldn't indulge in the chiles because I'm nursing right now and Niko screams all day and night if I eat anything spicy (or anything of flavour for that matter).  

Here is a video of the chile roasting at the Farmer's Market.    

Gorgeous Chiles

Pan frying some samples.

Mila sampling the sweet chiles.

We also drove up to the mountains to enjoy the golden aspens.

Kiril walking his aunt's dog.

One of my favourite moments was watching the leaves dance in the breeze.

The Santa Fe light is so crisp, vivid and earthy.
Niko spent hours staring at the strands of light through branches and leaves.