Friday, April 3, 2015

We Are Not Wonderful Or Awesome

We do not pretend that our actions make us wonderful or awesome people.  Yes, I will admit, we like to look at ourselves in the mirror and be proud of who we are.  And that's what we tell our kids: make sure your actions make you proud of yourself.  That you can look at yourself in the mirror at the end of the day and be satisfied with what you have done or what you have said.  Michael and I are proud of who life has shaped us to become.  We feel fulfilled with what we have, with who is surrounding us.  We feel like we have nothing to envy.  This did not all happen overnight.  It takes a long time sometimes to build enough self confidence to learn to swim upstream comfortably.  But we just followed the course of events that unfolded in front of us.  Everyone comes to life with a mission and I guess we are living up to what ours was through our family, our children.

The really wonderful and awesome people are the ones around us, near or far, who have been helping us through this all so far.  Hopefully, I have everyone here...!

- my mom and dad, and Michael's mom and dad for supporting us without judging us;
- our friend who has been helping our boys with their homework during my absence;
- our precious friends and our caregiver who have travelled to Toronto to bring support;
- our friends who have been supporting Michael and have been advocating for him in hospital;
- the MFRC in Toronto for helping us find an incredible ''human resource'' and the KMFRC in Kingston for their support with the girls;
- our Military family who organized a Meal Train when I returned to Kingston and felt so overwhelmed;
- the local restaurants and businesses who took part in the Meal Train;
- our amazing friends from far away in UAE who have been supporting us since the very beginning of this amazing adoption story of the twins: we miss you guys so much!
- our Vietnamese family in Canada: we are so blessed to have your support and we are proud to make the Vietnamese culture a part of our family;
- the parents of the dance, robotics and cadets communities who have helped with transportation;
- the mother who made sure my boys could attend her little boy's birthday by providing transportation;
- the little child who asked his guests for donations for the twins in lieu of birthday gifts: thank you from Binh and Phuoc!
- the individuals from all over the world who have been sending presents to the twins and their siblings;
- the young man who offered Binh and Phuoc a tote bag from his company: thank you Andrew!
- Michael's co-workers and the personel who works at the Base Hospital;
- My friend VĂ©ronique who took over the admin of our Facebook page when it became overwhelming!
- all the so very generous people who have been contributing to our GoFundMe: wow!!!
- the random people who saw me in the hospital, recognized me and just came over to give me a hug;
- the medical teams at Sick Kids and Toronto General Hospital
- our home care nurses who show up everyday at home for IV therapy;
- the very patient people who work in the Live Liver Donor Assessment office at TGH: do we owe you paper for the fax machine?
- all the 100s (over 600) people who have volunteered to donate part of their liver for our girls: that took a lot of courage!
- and hopefully the many of those hundreds who will make the decision to leave their name on the list to be anonymous donors for the other equally worthy people waiting for an organ;
- my children's schools: thank you for keeping an eye on my precious children by making sure they remain happy through this all;
- all the different groups and organizations who have come together to send donations, thoughts and prayers our way;
- and all the members of the media and press, from all over the world, for helping us by making our twins' story known and therefore helping in raising awareness for organ donation and Alagille syndrome.

Without all of you, this would not be possible.  YOU are the AMAZING and AWESOME ONES!

February 10, 2015: A Date To Remember

February 10, 2015, marks a victory for our family.  We promised the twins, on the day we first saw them in Vietnam back in November 2012, that we would do everything we could for them.  I was determined to fight to the very end for them.  And I did.  We fulfilled our promise.  
On that very special day, my husband Michael donated a portion of his liver to our daughter Thi Phuoc.  

I woke up on that morning with a gentle kiss from my husband.  I had slept in the room at Sick Kids with Phuoc and he had spent the night in a hotel nearby.  Well, in reality, neither of us slept.  Michael was anxious and so was I.  But Phuoc slept well.  Michael brought me a coffee.  It was 5h00 am.  We sat for a bit, then went for a short walk in the hallway.  There was not much to be said.  We both were secretly hoping for the very best outcome.  But we both were also aware of the risks involved for him and Phuoc.  5h30 came fast and it was time for him to go so he could report at Toronto General for 6h00.  This Army guy never wants to show up late!  It felt weird for me to see him leave for something as big as this was, and not be able to go with him.  I have seen him go off on missions with the Military many many times, but none of these goodbyes were nearly as hard as this one as he was embarking on a special mission.  I felt thorn between my duty as a wife/best friend and my motherly duty.  And it remained like this the whole time Michael was in the hospital.

Daddy saying goodbye to Phuoc on the eve of the transplant.

My older daughters arrived bright and early, dropped their suitcase in Phuoc's room and raced to Toronto General to get the chance to kiss their dad good luck before the surgery.  They made it and came back to spend some time with Phuoc before her time came.  A very close friend of mine also came to spend a few days with me including the transplant day, and then another very good friend arrived to help out with Binh and the whole situation.  I was lucky to be well supported because Michael and I had totally underestimated the challenge ahead of us.  Having two loved ones in surgery and then in recovery in two different hospitals is tough.  And having a toddler around, waiting for her turn to go is hard as well.

We spent some really nice time with Phuoc, who was in a really good mood.  She was giggling, being her true self.  Once we got the ok from TGH that Michael's liver was good to go, Phuoc got called in.

Mommy saying ''see you later'' to Phuoc, just before she entered in the OR for an 8 hour long surgery.

We walked Phuoc over to the holding area.  It got very emotional and Phuoc started to sense something was not quite right.  I held her close while talking to the nurses and the anesthesiologist.  I did not want to let go of my little baby girl.  I carried her to the door of the OR and handed her over.  This was the hardest thing I ever had to do.  But I knew by doing so that I was fulfilling my promise.  There was nothing else more I could have done for her.  And when the doors closed, I felt a huge sense of relief.

The day went on very smoothly, almost in a surreal manner.  I spent quite a bit of time on Facebook reading all the nice messages from people, did some laundry and organized a few things where we were staying.  We went to have a bite to eat and I even saw my big face on tv while eating! And before we knew it, I received a text telling me that Michael's piece of liver had been carried over to Sick Kids and that he should be out within a few hours.  And so he was.  His surgery was done in 7 hours and I was able to go visit him around 4h00 in the ICU.  I remember thinking how surprisingly good he looked.

Drugs were an amazing thing for him: he barely remembers the first few days...!  It helped control the pain and discomfort, both mainly associated with gas trapped in the abdomen.  We asked another close friend of ours to spend a few days with him to keep him company and be his advocate.  This way, I was able to give more of my time to Phuoc and Binh.  This was a good plan.  He stayed in ICU for about 36 hours and was then moved to a room.  He sat the day after the surgery and walked to meet me in the hallway on day 3.  Michael stayed in hospital for 9 days.  But on release day, he was doing pretty well.  It sure helps when you go in in excellent shape.

Dad in ICU.  I went to visit him while Phuoc was still in the OR.

I must have made my way back to Sick Kids around 5h30 pm.  I think we met with the surgeon around 7h30 pm, but I could be wrong, things are a bit blurry.  I remember hearing these words coming out of his mouth: ''very smoothly and as planned. G-tube remains.Very optimistic.''
And this is all I needed to hear.  Both my loved ones had pulled through.  And that's all that counted then.

I went to visit my Phuoc in CCU and I have to say I was very well prepared: I had seen many pictures of liver transplant kids coming out of surgery.  My girls are fighters.  They have been through many storms in their short lives.  I knew Phuoc would be ok and I know Binh will be ok when her turn comes.

The nurse told me to go and have some rest.  My friend and I went for a celebratory glass of wine, and barely talked to each other as we were reading the nice comments from people from all over the world!  I barely remember my head touching the pillow: it had been an emotionally exhausting day, but we are privileged to have been given a chance with Phuoc.  We are now anxiously waiting for Binh's turn to come, when it is due to come.

Phuoc coming out of surgery.  This was in CCU.

Still in CCU.  Day 1, breathing tube already out.

Day 3.  Sitting for the first time.

Day 5.  First visit from daddy.  He walked halfway between the 2 hospitals.  Impressive.

Back home after 4 weeks.  Healing well.

6 weeks post transplant.  Binh (left) is still waiting for her life saving surgery.  Phuoc (right) is obviously doing very well.