Those Genetics…

A mom post tonight….

It’s become part of our routine to see Lily’s birth parents every few months. We really enjoy seeing them: watching the expression on their faces when they see how much she has grown and what she can do.  There is something immensely fulfilling about watching her birth dad hold her for an entire meal and just feeling the love he has for her fill the room and we are always very aware that we hit the jack-pot when it comes to birth parents.  We know that our situation is a little unique – most people think of open adoptions as exchanging photos and maybe a yearly visit – but despite my original thoughts, I’m so happy that this is the relationship we have, and will continue to have so that Lily can know her entire family – including her new little sister.

littlesister

Lily’s birth parents had a beautiful baby girl earlier this year and we were able to set up a visit so we could meet her.  It was certainly a bit surreal to sit across from the 4 of them and see the family that could have been – to see the resemblance between Lily and  this new baby, to see what characteristics they share even though they’re not together: the short catnaps, sucking on their bottom lips, their tiny ears.   We often make jokes about what Lily has “inherited” from us, but sometimes it’s incredibly cool to see genetics at work.

footinmouth

We had a visit to the Eye Clinic at Sick Kids last week, which is not one of Lily’s favourite places.  Lily’s sight, prior to the Cardiac Arrest, was something that we were actually really pleased with.  She was lucky enough to not have any of the eye issues that kids with Down Syndrome are more prone to (cataracts, issues with focus, etc).  However, after her cardiac arrest, one of the biggest developments was a Cortical Visual Impairment and for a long time we were very fearful that she was completely blind.  We have been lucky to see a massive improvement with her eyesight but her right eye still shows a significant strabismus (turning in) and we’re still having some issues with her tear ducts watering.  So, after sitting through the dreaded eye drops and then cutting her nap short to have the doctors touch her eyes (ophthalmology appointments never go well in our house), it was decided that it’s time to book a surgery to fix both issues.  We don’t have a date booked as of yet, and we’re also getting in touch with our pediatrician about setting up a complex care consultation to hopefully deal with some other issues while she’s out for this surgery (we’re hoping to minimize the number of times she has to be put under anesthesia).  We don’t love the idea of surgery but when you weigh out the risk vs the benefits, we know that it’s time.

pandababy

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“Today”

A mom post today….

We were driving to the zoo on Sunday morning and Jess turned to me

“Do you know what today is?  It’s today.”

Such simple words but ones with so much meaning between the two of us – it’s almost like a secret language.  “Today” was the day that we almost lost Lily; the day that our lives stopped in an instant and we got caught up in a vortex where the rest of the world ceased to exist.

We’ve talked about it, ad naseaum, I’m sure.  It’s hard not to when a day just sends your life in the total opposite direction of where it was headed.  But the truth is, the direction spinning really started the day of Lily’s surgery.  It was being pulled into a room by her surgeon and being told about her PVS: laying out the two possible outcomes (that the surgery would solve everything and she would show no other symptoms – which he didn’t think was realistic, or the disease would eventually be fatal).  We stood, against the barrier looking out into the Sick Kids atrium, in shock and crying.  It seemed so unfair – she had only been ours for a week and now we were in danger of losing her.  At that time we didn’t know that the disease was progressive and doesn’t work on any sort of timeline, we didn’t know that a heart-lung transplant was an option, we didn’t know that we have one of the most amazing cardiologist teams in the world, we were just heartbroken.  The next few weeks were filled with so many unknowns – words like chylothorax, pleural effusion and pulmonary embolism became part of our regular vocabulary, and we learned about seizure medications, g-tubes and Cortical Visual Impairments.  Those 66 days changed our lives in ways that we probably don’t even know.

And even now, looking back, there’s no way to describe that time and get it right: the fear, the hopelessness and the anger at the situation that are mixed in with the love, pride and amazement at such an incredible little girl.   Sometimes words can’t do it, but sometimes photos can.

We (I) took tonnes of photos during those 66 days, because I wanted Lily, when she was older, to see the physical evidence of how strong and incredible she is.  But these photos have become my own personal therapy – when I get overwhelmed at the possibilities in front of us, I look at these photos and I can see for myself how bad it was and how far she’s come.

But we’re here, 2 years later.  We’ve learned more words and more therapies and our life is nothing like what we had expected when we first brought home that little girl named Natalia.   It’s might be a crazy life – but it’s our life (ten points to the geeks who can identify that quote).

This week, we’re also asking you to send some health, good transplant thoughts to our friend Alexa.  Alexa is a pretty amazing girl, who has something called a UCD (Urea Cycle Disorder) and she is having a liver transplant to help her get super healthy and strong.  We know that life is going to be a bit tough for her for a while, but we want her to know that we’re thinking about her and rooting her on – she’s totally one of Lily’s heroes!

Pre-Surgery Echo & Lily's first overnight visit

Pre-Surgery Echo & Lily’s first overnight visit

Initials in place - waiting for surgery.

Initials in place – waiting for surgery.

They had to keep her fully sedated to keep all of those tubes in place.

They had to keep her fully sedated to keep all of those tubes in place.

In the CICU - the surgeon had to leave her sternum open for 3 days to allow the swelling to go down.

In the CICU – the surgeon had to leave her sternum open for 3 days to allow the swelling to go down.

Our home away from home...a comfy chair & footstool in the CICU/CCU parent lounge

Our home away from home…a comfy chair & footstool in the CICU/CCU parent lounge

Chest tubes finally removed and we were allowed to walk around the 4th Floor

Chest tubes finally removed and we were allowed to walk around the 4th Floor

Taking in the view on our first escape from the room

Taking in the view on our first escape from the room

Post cardiac arrest - the nurses always made sure she was snuggled up tight

Post cardiac arrest – the nurses always made sure she was snuggled up tight

Constantly monitoring her O2 saturations

Constantly monitoring her O2 saturations

First smile post cardiac arrest

First smile post cardiac arrest

Pensive at 2 years

Pensive at 2 years

Monster Lily

Monster Lily

We've come a long way Bugaloo

We’ve come a long way Bugaloo