RIP sweet Julian

There are no words when it comes to losing a child and whenever an I-cell child gains their angel wings it hits so close to home.  Julian lost his battle to I-cell and I am so deeply saddend. Please give a prayer to this beautiful family so that they can find peace and strength in such a difficult time.

RIP sweet Julian.  You fought so hard and were loved by everyone whose lives you touched.

September 9, 2011 - January 29 2013. 

Moving on...

We've learned the lesson that life goes on many a time throughout Gabrielle's life.  And it does.  It doesn't even give you time to recover after the trauma of thinking you were going to lose your child in the ICU.  Gabrielle recovered, we thanked the universe for more time and we brought her home. We are so grateful.  Nobody, was happier then Gabrielle to be back in her warm, cozy loving home.  With all the nasty flu viruses and colds going around, we continue to enjoy many, many moments with our beautiful girl.  Did I mention how grateful I am?  

Warning: a barrage of pictures sent from family, nurses and taken ourselves are about to appear:)

One happy, exhausted daddy and his girl are leaving the hospital.

The siblings reunite!

The real story:)

Getting inspired at Oprah.

Going for a walk with her nurse.

"Purpose is spirit seeking expression". Oprah

A day trip to the city with the boys.

Gabrielle visiting the pet shop.

More...

More ba ba ba's
More banging on your food tray
More peak a boo's
More ah's
More 'dancing' on the floor
More clapping hands
More time to read your favourite books
More walks
More yummy food,
More sunshine on your face,
More kisses and tickles,
More chances to go swimming,
More time to play with your brothers, your cousins, your aunties and uncles and grandparents,
More time to achieve milestones,
More smiles, laughing and being goofy,
More time for me to dress you up in your pretty dresses that hang in your closet,
and your adorable little shoes,
More warm bubble baths,

I realized very quickly Friday night that all we have is time.  Thank you for fighting so hard.

Welcome home sweet baby girl.  We love you.

Leaving BC Children's Hospital

"Amazing" Recovery

Like just 10 minutes ago the doctors took Gabrielle off bi-pap and back onto regular flow oxygen.

She had Influenza-A, which, we learned, can cause seizures in its early stages. Fortunately its one of the few flus that can be treated with tamiflu.

She's recovered in "amazing" fashion (to quote one doctor).

We seriously thought we were going to lose her.

The blend of state-of-the art medicine, incredible doctors & nurses, positive energy and prayer is simply beyond words.

While it's only the start of the flu season, with many more bugs to likely come and her baseline compromised so early on, we'll take it... and every extra day, week, month we have with her.

Thanks, everyone, for thinking of her.

Update in ICU, January 11, 2013.

Gabby's not yet weathered the worst of this virus, and the doctors are getting bi-pap support ready for her. The high-flo, maxed out, just isn't enough. She's never needed so much support before, and it's really tough to watch.

Meanwhile, word on the street is that Jonathan has finally taken to the bottle. Amazing how Gabrielle is teaching her little 51/2 month old brother that sometimes you just got to roll up your sleeves in this life and get on with it.

Admitted to ICU

Gabrielle was admitted to the ICU this afternoon and put on high flow (55% and 8 litres of pressure).   We finally got an NPW and it came back showing that Gabrielle has Influenza A.  She is very sick.  We started her on some dexamethasone to help with the inflammation in her lungs and some nose sprays to help her breath easier through her nose. The high flow has allowed her to sleep and regular doses of Tylenol are keeping her relatively comfy.  She had an EEG done this afternoon, and she is having seizures, so she was put on seizure medication which should kick in fairly soon.  I don't know if this will be a regular thing or if it was brought on by the flu and will dissipate when she's better.  Time will tell.

I am so proud of my girl.  The high flow gave her some relief and allowed her to sleep comfortably which allowed her to be more alert.  I was so relieved to see her smile and play later on in the day.  She is so strong.

There are some superstars in my family that I am so grateful (besides Gabrielle and Regan).  Thanks to my mom who had to teach Jonathan how to feed from a bottle all day today as I raced out the door at 6 am to get to the hospital.  Jonathan has never fed from a bottle and won't take a soother so my mom had a big job today!  Jonathan proves to be as determined and stubborn as the rest of the Ross kids and barely ate all day but Grandma Jane persevered.  I think tomorrow will be the day:)

Thank you for all the emails, thoughts and prayers.  I know they helped.

I pray for a restful and peaceful sleep for my baby girl.

EEG

Daddy's girl - their bond is indescribable

Prayers for Gabby

I have a quick minute to update.

Raced here early this morning after Regan called at 6:45 am for me to get here quick as they were headed to the ICU.  With a big desat to the 40's and a heart rate in the 200's the team had to quickly bag her to bring her oxygen to the 80's and slowly she recovered.  She still has a temperature and has had one for the last 10 days.  Her heart rate continues to be high and she's sitting at a liter and a half of 02.  An x-ray taken last night shows some patchy spots in her lungs.  They tried to do an NPW this morning but it started a heavy nose bleed and they had to stop.  We still are unsure of the virus she has.  ENT is coming to look at her today as well as neurology.  The most disconcerting thing right now is her twitching, body shakes and loss of consciousness for moments at a time.  Although feeling miserably, Gabby without a doubt, manages to smile at everyone that walks in the room.  Her spirit is amazing.

It has helped before and it can help again.  All your thoughts and love are felt near and far.

xxoo

Shoes

I found this poem posted by another mother who has an I-cell angel and I loved it so much I wanted to share.

I am wearing a pair of shoes. They aren't pretty shoes… uncomfortable shoes. Each day I wear them. Each day I wish they'd feel more comfortable. Some days my shoes hurt so badly that I do not think I can take another step. Yet, I continue to wear them and continue my journey....I get funny looks wearing these shoes. I can tell in others eyes that they are glad these are my shoes and not theirs. They never talk about my shoes.... To learn how painful my shoes are might make them uncomfortable. To truly understand these shoes one must walk in them. But, once you put them on, you can never take them off.

...I now realize that I am not the only one who wears these shoes. There are many pairs in this world. Some women ache daily as they try and walk in them. Some have learned how to walk in them so they don't hurt quite as much. Some have worn the shoes so long that days will go by before they think about how much they hurt. No Mom deserves to wear these shoes. Yet, because of these shoes I am a stronger woman. These shoes have given me the strength to face anything. They have made me who I am. I am a Mom who has a child with special needs. I will forever walk in these shoes. 

Hard Work and Health

I wouldn't read this if you're looking for something uplifting. But I just feel like it needs to be shared.

- - - 

Keeping an I-Cell child alive is a lot of work.

Fear of oxygen cords popping off. Chronically checking the tank regulator's dial to ensure it hasn't been nudged ... landing between two settings that shuts the valve off... shutting off our daughter's air supply.

Did we bring enough O2 for the trip?

Lying in bed, dead tired, almost asleep, and hearing your daughter cough, hoping it's not a bad plug. The cough turning into an abrupt silence. 5 seconds pass. An eternity. The sat machine goes off. Levels dropping. Jumping out of bed. Lift her up. Suction machine. Crank up dial on 3-foot-high O2 tank that takes up a good portion of her room.

Feeding her mushed up food knowing that every cell of nourishment won't be stored by her body properly. Every bite progressing the disease. The work of it all. Both for her and for the parent.

The brittle bones. The scoliosis. The kyphosis. Other kids running around and jumping. Wincing and hoping that they don't land on her and crush her. One wrong step. Oh god.

The hands that don't work properly. Those beautiful hands that hold the entire world within them. The ones that need braces put on them when she sleeps so she doesn't lose her range of motion due to the disease contracting them permanently.

The deafness. The near-sited partial blindness. The dislocated hips. The rib-cage and sternum that breaks your heart every time you look at it. Wondering how much pain is she in? Any? Is she just used to it?

Turning the sat machine off some nights at 4:45 in the morning b/c you just want to sleep for a couple hours. Hoping that she'll be okay when you wake up. But the guilt you feel when you see her lips a pale blue in the morning.

The fear of flus and fevers and other people's colds. Knowing that your daughter is a bad cold away from passing has become normal. A crazy normal. But not wanting to bubble your family away in protective fear forces you to come to peace with this reality. Someone's bad sniffle could take your baby girl's life. The worrying becomes normal. A normal not many can understand.

The cries. The bone-chilling, heart-breaking cries that make you want to give your life to take the disease away from her. Cries that – as much as you try not to – make you want to cry with her.

The sadness. The long goodbye that you don't want to end but know has to.

The life lessons you didn't think you would learn until your 70's or 80's, if at all. Seeing the finality of everything by coming to grips with your child's mortality.

The distance in perspective that grows between you and what seems to be everyone else ... except for other parents who've endured the chronic sadness of slowly losing their child to something beyond their control.

Keeping an I-Cell child alive is a lot of work. It makes me appreciate my own health. The good health of my other family members. It's a phenomenal gift so many of us take for granted. I wish I could give it to my daughter.