Ella's First Crush

I originally wrote this text a couple of weeks ago to add in to the series of moments in Ella's life I docu- mented for BCCH Supercommunity ELLA - Everyone Loves Littles Angels. It should have been added yesterday, in place of Ella's First Halloween which I should have written today. Oh well, can't dictate a mother's heart and where the inspiration comes from right? Oh, and I've made slight additions to it too :)

So here it is.

It was October 30, 2008 and Ella had just been re-admitted to BCCH for the second time the day before. By this time, we knew Ella's condition was serious enough that she required oxygen therapy. We were on 3M, in quiet a corner room. And on that day, as I rocked my daughter, we met nurse Ryan.

Ryan was our third male nurse. Chris had been our ongoing nurse extraordinaire when Ella was born at BC Women's. And then on Ella's first hospital stay, we were fortunate to be cared for by Mark on 3R. But as we started this stay at BCCH, I noticed something in my baby girl's eyes when Ryan entered the room.... It was as though Ella had a glimmer in her eyes :)

It did not take long for both Ella's dad and I to understand that the glimmer was actually Ella's way of telling us she had a crush on Ryan. She would become so focused on him as he cared for her, and would be so playful, even more so than with other nurses. And she would just have that happy look every time he was around. We were blessed to have Ryan look after us (I say us because I was staying with Ella 24 hours/7) and Ryan was of such great help to me throughout this difficult time.

Fast-forward a month and a half and this time, we have been readmitted in to BCCH, and have already been transfered down to the ICU because Ella's state has greatly deteriorated. I am walking back to 3F where Ella had spent two nights to update the staff on Ella's state and I ran into Ryan. Upon hearing of Ella's return, he promised to stop by to see her. And sure enough, at the end of his shift, Ella received her first visitor in the ICU: her nurse Ryan. Although Ella was pretty sedated, I know in my heart she was aware Ryan was there to say hi.

And as we started what would be a very long stay in ICU, I thought my baby girl was so blessed to have a first love, besides Maman and Daddy, that loves her right back!

I am thinking of you today Ryan. And of all the wonderful caregivers that spend their life looking after other people's children in hope of making them better. And though sometimes, they can't do that as much as they'd like because life takes over, you always manage to make it easier on us, parents, and our little ones too.

Thank you - from Ella, from her dad, from me and from every single parent out there who's had a child spend a scary day/night in a hospital! With all my love and gratitude.

ELLA - Everyone Loves Little Angels

Ella's First Halloween

On October 31st, 2008 Ella had been back at BCCH for 3 days. That stay started with a series of tests which landed her in the critical care section of the ER. But by Halloween, she was already well settled into her room, a very spacious room actually, on 3M. That's where Ella and I spent a month together, day and night.

By some stroke of luck, Ella was the only patient in that room that normally could fit two patients. And that was perfect, considering I stayed by her side at all times. A small pull out chair, uncomfortable as can be, was soon replaced by a fold-a-bed. It was not the Ritz by any means but we managed. There was a TV, and we had a rocking chair which was pretty much dedicated to us. Oh, and a private bathroom too :) Luckily, there was also a small kitchen about 30 steps away from her room, equipped with a fridge, micro-wave, toaster and good things like milk, fruits, juices, bread and cookies.

Ella's dad came by daily. One of us would make the Starbucks run (venti chai latte and venti non-fat latte) and get the paper. Those days were filled with play time, rocking, reading and finger holding. It was also a chance for me to catch up on my sleep (I insisted on feeding Ella myself during the night for a good portion of the month). Sometimes we had dinner together with Ella. And several times a week, I'd get a home cooked meal.

October 31st remains a very important day in my mind. It was the day that Ella had her first "scary" procedure. It would normally be an easy one, but because she was just a baby, she had to be intubated and sedated for that one. Ella was having her first CT scan, in hope of trying to pin point the source of her trouble. We'd been cancelled twice already in the previous day and though I was anxious for it to happen, I was disappointed that it was on Halloween.

When we had been in Montreal, just days before, my mom had presented Ella with her very first Halloween outfit. I have to admit that on the spot, I was a little bit annoyed at my mom because I was looking forward to picking out an outfit for Halloween for Ella myself. But now, 5 days later and back in Vancouver without my family to support me, I felt blessed by my mom's love and her gift. It would have been impossible for me to shop for an outfit. And the fact that she had made me feel so much happier on a day where there was tremendous stress associated with Ella being intubated and sedated.

After Ella came back from the scan and was resettled in her room, we got a bit of a surprise. There was rumbling in the hall and giggles were heard... It was the Halloween parade! Patients and staff - all dressed up - were strutting their stuff in the hallway and poking their heads in where ever possible to cheer everyone up.

And that's when my mom's gift came in really handy. I quickly proceeded to dress up Ella. The costume could not have fit her more pefertly. And it was a zip up, with a little hood. Perfect for a babe that has 02 tubing around her! Hot, definitely, but oh so cute. The cutest and sweetest pumpkin of them all!

Soon, we had nurses and other staff knocking at our door. And then, people we did not know, people who had heard of the cutest, sweetest pumpkin and wanted to say hi :)

As I visited 3M yesterday with Linda, chaplain at BCCH, I felt a twinge in my heart and tears in my eyes. We stopped by the nurses' station to drop off a Halloween outfit. A little dalmatian outfit for a baby on 3M. An outfit that is perfect for a baby that has tubing and that can't be too dressed up. A dalmation cape, with mits and booties. A simple gift from Ella to parents who are unable to get an outfit for their first baby's Halloween... A gift that equates what my mom did for me last year...

And as I entered the ward, it all came back to me. The month we spent on 3M. The many nurses who were taking care not only of Ella, but of me. The fun times we had with Ella as a family but also withour friends who came to check in on us. And as I walked by her old room, I was floored... It had been a very long time since I'd been on the ward. And though I remembered exactly where her room was, I could not remember its number. There, in true Ella form, was her old room, room #27 (if you've seen my previous blog, you'll remember that Ella's all about number 7, always). I left the hospital with a smiling heart, thinking that whenever I feel down for whatever reason, Ella picks me right up!

And today, as I presented Ella with her new Halloween outfit (a set of pink angel wings, a tiera and a magic wand), I thanked my baby girl for giving me will, the love and the energy to pay it forward.

ELLA - Everyone Loves Little Angels

A lifetime in a day

Today, a year ago, Ella was admitted to BCCH for the second time...

Today, a year ago, my beautiful little girl, whom I always felt was very sick, had to undergo more tests than most people will ever do in their lifetime...

Today, a year ago, Ella's day started as it always had, happy and safe - except I had to hold off on feeding her because she was to do a baryum test, otherwise known as a swallowing study. It was the first of many appointments set up for us by our pediatrician who had told us 5 days earlier that we needed to cut our trip short because they had found something abnormal on Ella's lungs.... And true to form, my baby girl did amazingly well. She gobbled every ounce of that mix she was fed that allowed the docs, and us, to see how she swallowed without skipping a beat!

Then, after about a 45 minute wait, we made our way to test #2. This one, I was terrified about! This one could have very serious implications. We were going in for a sweat test - the test for CF - cistic fibrosis... For this one, Ella's arm was "painted" with a mixture and then wrapped in saran wrap. And then, Ella was bundled. Bundled like she was in the middle of the Artic! (We'd been asked to bring the warmest clothing we had for her, and blankets too). This bundling ensures that kids sweat, and then this sweat is analyzed over what I considered to be an excruciatating two weeks... Blood is also drawn on that morning and my poor little Ella could not even emit a sound by then. She just had lost her ability to vocalize her cry (the condition with her lungs had paralyzed a vocal chord, something we found out about later that day).

By then, it was nearly 2pm and we made our way to the lung clinic, to see the lung specialist. At the registration desk, we were told he'd be unable to see us and that his colleague would take care of us. That's when we met one of the doctors who would be instrumental in trying to save Ella. That's when we met Mark.

He took Ella's history very diligently and answered the thousand questions I was throwing at him along the way. After examining Ella, we made our way to the lab to test her 02 level. And that's when I really got a feeling that everything was far from fine...

Ella was hooked up to an oxymetry reader and as I held her, I saw Mark's face as he read the result. He then unhooked, rehooked and pressed start on the reader. And his face still had this puzzled look as he read the result. He asked the lab technician for another reader and tried as best as he could not to let on to anything wrong. And even before we tried the second reader, I knew. I knew.... Ella's readings were in the low 80s... She should have been in the high 90s... What I did not know at the time was that at 80, we should have seen a change in colour in her skin. There was none of that. And then, all hell broke loose... Mark got his fellow lung specialists involved, and within minutes, Ella was transfered to the ER's critical care area...

And then, it just got worse... A team of what felt like 50 people (but was in fact about 15) surrounded us. Nurses took the history while others prepped Ella. Doctors rushed in and out to assess her. And I tried not to lose it. An IV (intraveinous) team member was trying to put a line in to Ella's fragile arm and kept missing... I was bombarded by questions about what was happening with Ella's symptoms: what, since when, allergies, pregnancy recap, family history....

That day in the ER a year ago is so clear in my mind and yet so blurry all at once. I missed part of it because Ella's dad and I were separated by all the action - not sure if this was intentional or not on the hospital part. All I remember is lots of poking, lots of blood being drawn, urine and stool samples being taken, a scope going down my baby's girl throat, a confirmation that there was indeed a paralized vocal cord. And a lot of unanswered questions about what the hell was going on...

Today, a year ago, my knees buckled and my world crumbled... And yet I remained hopeful. Hopeful that my baby girl would be okay.

Today, a year ago, my life changed forever. And as tragic as this year has been, it has brought me incredible joy and shown unconditional love.

Today, a year ago, I never would have dreamt that I'd be where I am today: a bereaved mother still recovering from losing my only child - the love of my life.

As today started, I was reminded of all those emotions, the uncertainty, the unanswered questions. And I know now more than ever that as certain as tomorrow will come, there are no guarantees, no absolute answers and no way to predict the future. You just have to trust your heart, and move forward...

ELLA - Everyone Loves Little Angels

Lessons from my daughter

From the day I found out I was pregnant, I was ecstatic. Scared, granted, but ecstatic. I’d been wishing all my adult life this day would come. That one day, I’d start a family.

So when the complications started in January ’08, a month after I found out I was pregger, I became worried but kept it to myself. I saw my doctor and was referred to a high-risk obgyn because of the nature of the complications, my age and my few health issues which thankfully were all under control. Not even Ella’s dad knew what was going on as he was away assisting family members who were going through their own health tribulations.

In the second trimester, things settled and I was able to announce the big news to family, my friends and I returned to work after a few weeks’ absence. I was feeling better but there was still a lingering doubt in mind that all was okay with the baby. And then, in May, I found out that Ella was not growing properly. She was IUGR (intra-uterine growth restricted) – a fancy term to say that she was way below the curve. Moving steadily upward, ever so slowly, but way, way below the curve.

And so, the worries came back flying. By that time, I knew I was going to have a girl, and that was part of my stress. I was never a girlie girl, and thought “what am I going to do with a girl? I’ll break her!”

Ella, though born by all appearances healthy, had a very serious condition brought about by a gene deletion that made her little lungs pretty much at end-stage emphysema by the time she was 3 months old. And in the words of the pathologist who examined her remains to try to give us answers, Ella was a miracle as she did not have enough healthy lungs to sustain a 3kg newborn...

Well, my “I’ll show you how it’s done little girl”, my zebra as she was known to her medical team, my amazing little fighter did show us how it was done. She made it to 7kgs… 7 big kilos!! And while she was confined to a hospital bed for the better part of her life, Ella was strong and healthy - as healthy as you can be with completely destroyed lungs. And in the end, the fact that she kept growing was part of her downfall, as her illness did not allow for her bad lungs to repair themselves as she grew. But it did not stop my Ella to flash smiles at everyone, stick her feet up and dance a jig, bounce her King Louie Monkey and Scruff (the wanna be reindeer) off her legs, play with her Pinky Bear blanket, sit in her vibrating chair or tumble form and count all her fingers so intently. Nope, it did not stop Ella from being a perfect little girl, loved and cherished by all who knew her.

And as I reflect on Ella’s life, and though it is possible her illness came from me, I can’t help but think that if anything I enabled her. Enabled her to be a happy. Enabled her to be vibrant. Enabled her to be a fighter (she does have my pig-headedness and my “I’ll show you how it’s done attitude!”.)

And as I continue to honour Ella daily, she is the one that is now enabling me. Enabling me to get up, smell the beautiful roses I left by her grave this morning and enjoy a wonderful fall Vancouver in the sun.

Ella enables me to live.

Thanks baby, maman loves you and forever always will. No matter what!

Looking for answers...

It's been nearly a year....

In fact, next Thursday, Oct. 8, will mark the one year anniversary of obvious physical signs that supported what already knew... That my daughter Ella was sick... and that I did not why or from what....

How ironic is it that on the day I was taking a second formal step in figuring out how I can give Ella a brother or sister, the dreaded news came.... The news I'd been longing for, formally for a year minus a week although I questioned it from the day she was born... and which in the last few days I had secretely wished would never comes as a formal diagnostic...

Today, hours after meeting with the counsellor that would "clear" me to become a mom again, I got the news... Ella had a disease... And that disease now has a name... A disease which I may have passed on to her... A disease which, clearer than ever now, would take her life... Ella was missing a very crucial gene and there is no way we could have ever predicted it... or even saved her...

One doctor called it... And yet it was not thought of as being a the real cause for her illess... And then a pathologist called it, and still it was not thought of as being THE diagnostic... I guess science does not lie as today, both a doctor and a pathologist were in my thoughts and in my heart as I heard the news....

Ella, my sweet, vivacious, bright as button and so happy and charismatic litte girl did not stand a chance... And now, I am faced with a whole lot more questions than I started my day with...

Did I pass this genetic disorder to her... Can it happen again.... Could the stress and discontent that was surrounding me during pregnancy and what should have been the best days of my life contribute to Ella's illness? Could a diagnostic last November have rendered a better quality of life for my angel for those few precious months she had with us? Was there TRULY nothing we could do to save her?

As I ponder on all of those questions tonight, I am in disbelief... Disbelief that such a perfect little girl, with a smile that lit the sky and eyes that saw right through your soul, could be striken with such a radical illness that it silently kills her from the inside out...

Ella, I know was here for a reason. She has taught me so many lessons - some I never wished to learn and did not have a choice to learn; and some that were repeated to me for years on end and I still did not get them until now...

And as I strive to honour Ella and do right by her, I am left wondering what the future holds and if I am right in thinking from the moment I realized something was off with my baby girl, that I did this do her, completely oblivious and unaware of it.... or if this was a fluke of nature that brought me my little angel to teach me a lesson and make everyone's lives around more meaningful because she was part of it...

I doubt I'll find out about most of those answers in this lifetime, and in the meantime I will hang on to the thought that my beautiful angel Ella will send me the next best thing to her resurecting: a beautiful and healthy rainbow baby....

ELLA
Everyone Loves Little Angels