So we’ve gotten a tentative date for Evanna’s first surgery,
and though I don’t want to make the actual date public as there’s a possibility
that it can change – I will say it’s closer to the end of September. Why may it
change? Well first Nick and I approved to be added to the short notice list (so
if there is a cancelation, we’ll get a phone call giving us as little as 24
hours’ notice to get up to Edmonton). Other reasons why the date can change can
be due to another baby/child needing emergency surgery – so Evanna gets bumped,
Evanna gets sick (so her surgery gets pushed back), or her condition steadily
worsens and gets pushed up. So as you can see, even though we have a date, it
can easily change.
As the date for Evanna’s first open heart surgery
approaches, I have been getting a lot of people asking me what they can do to
help, so I’ve thought about it and came up with a list:
Donate blood! Evanna hasn’t needed a transfusion
yet, but I’m sure she’ll eventually need one and many more in the future. It’s
such a simple thing to do, and only requires about an hour of your time. So
what are you waiting for?
Are you a runner and enjoy marathons? How about
a fun family walk? Live in Calgary? If so, you’re in luck! Every October the Calgary
Heart Beats Children’s Society holds a Family Fun Run, with proceeds going directly
to helping children born with congenital heart defects and their families. I
tell you that Nick and
I have TWICE now received an envelope containing gas and grocery gift cards
every time we’re required to go to Edmonton for a major procedure. Though this
year we can’t participate because Evanna will be in the middle of recovery, I
can’t wait to participate next year! Clink HERE
for more information and
Volunteer. Find the closest Ronald McDonald
house, and find out how you can get involved! Whether it’s by donating some
groceries, baked goods, or extra event tickets that you won’t use and another
child and their family could enjoy (ie. hockey, football or baseball game).
Gather a group of friends and family members and be a part of their “Home for
Dinner” program by cooking up a meal for families currently staying there. This
was probably our favourite thing about the Ronald McDonald house. Families
staying at these houses are going through such a stressful time, and having a
meal prepared makes such a difference – it enables the family to concentrate
their time on getting their sick child healthy again. Once things settle down,
our family plans on doing this on Evanna’s “heartiversary” for the Calgary
Ronald McDonald house. I know most Ronald McDonald Houses have “Wish Lists”,
and they specifically list items they need (and what they don’t need). Click here
for Edmonton’s Wish List, and here
for Calgary’s. I know I get readers
from around the world, so don’t hesitate to look up what your local Ronald
McDonald house is in need of!
Donate! CHD research is severely under-funded. In
the United States, twice as many children die from congenital heart defects
each year than from all forms of childhood cancer combined, yet funding for
pediatric cancer research is five times higher than funding for CHD.
Organ Donation. Just at least think and ponder
about it. There are so many babies and children waiting for a new heart, and knowing
that this precious gift comes from a time of tragedy and sorrow for another family
weighs heavily on them. Though Evanna can’t have heart transplant because of
her type of defect, I still want to bring attention to organ donation because of
how many heart families I know that would greatly benefit from it.
Educate yourself. Before I was pregnant with
Evanna, I hadn’t heard much about congenital heart defects, nor how common they were (1 in 100 babies are
born with a heart defect). Now I feel like every time I turn around, I meet
someone who either has a heart defect or know someone who does. Learn the
language. I might speak in acronyms like ECHO, CATH, ECG, etc It’s okay to ask
me what they mean – or better yet – Google them.
If you are pregnant, or know someone who is –
understand the importance of the detailed ultrasound (done usually around 18-20
weeks) and ask questions! Do you see 4 chambers? How about the blood flow? Etc.
Days leading up to our ultrasound, I was soo excited to find out if we were having a boy or girl, but the
detailed ultrasound is so much more than that. Not all CHD’s are caught
prenatally. I’ve meet a few heart moms who didn’t know their child had a CHD until
after their baby was born and I am so glad that we had our detailed ultrasound
done at one of the best diagnostic imaging facilities in Calgary with highly
trained technicians. After your baby is born, watch for signs. Is a murmur
heard? Are they breathing fast? Any retracting close to the ribcage? Are they having
a hard time eating? Any bluing in the feet, hands or around the mouth? I am not
trying to scare anyone, but if you think something is off or not right, share
your concerns with your doctor!
We’ve have seen the power of what fasting and praying can do – so really,
that’s what we need the most. Don’t pray? That’s okay – we’ll accept positive
thoughts too! Whatever it is that you do to help get through a tough situation,
please send our way!
We are not asking for handouts but I know there are some people who really want to know
what they can do directly for our family. Honestly, because of our healthcare
system (I will never complain about taxes again), this hasn’t been too much of a financial burden for our family. I may
not go back to work in a fulltime capacity as quickly as I anticipated – but
that’s okay, we’re fine with me going casual. Again, we just need your love, support and prayers!
Thanks for following along,
The Irvine Family