Veya Hope VanderBrugghen

In the midst of harsh moments at the hospital, with the overstimulating beeps, the bright lights, the door constantly in rotation with different teams coming in with updates, I’ve discovered something vital as a mom to a medically complex child.    When it all gets too much, just reaching out to stroke Veya’s forehead and to hold her hand brings a lot of comfort.  This small gesture goes beyond calming her and soothing her fears; it’s about feeling connected in a world of medical uncertainty.  Our children, dealing with challenges too complex for words, find reassurance in our touch.   It’s a promise that they are not alone as they go through tests and procedures that might feel scary to them. When I hold Veya’s hands it feels like a prayer, a quiet moment of peace amid chaos, reminding me of God’s ever-present light during challenging valley like moments.   As we take another step forward in this journey of unknowns, we do it hand in hand, strengthened...

"And the LORD will guide you continually and satisfy your desire in scorched places and make your bones strong; and you shall be like a watered garden, like a spring of water, whose waters do not fail."   Isaiah 58:11 We did it!  We are back at Sick Kids! But what a ride it was to get here…. I went to visit with Veya last week Wednesday morning and to my surprise was told “she is moving today, this afternoon!”   So, I had to quickly clean up her room, take the artwork off her walls, empty the cupboards and bring that all back home, pack up a quick bag for myself and then circle back to Mac ready to join Veya for the ride.   Once I got back, I was told her transfer had got bumped to 8pm.   Perfect.   I went home again to enjoy a meal with the kids and say goodbyes to them and headed back to Mac.   Only to be told that her transfer got a further delay and wouldn’t happen now until midnight.   No problem, we know these things can happen and ...

"In all their affliction he was afflicted, and the angel of his presence saved them; in his love and in his pity he redeemed them; he lifted them up and carried them all the days of old."  Isaiah 63:9  204 days inpatient… What a journey it has been. We are still taking things one day at a time. Veya’s current health concerns remain a mystery to her team.   They have found no answers yet as to what is going on with her liver. Her enzyme levels along with her bilirubin continue to climb.   It breaks my heart because I can physically see that her liver is not functioning the way it should be by way of her color.   But Veya remains so strong and continues to persevere through each health challenge that has come her way by the grace of God.   She is such a fighter and is a million times stronger than me.   Each day we have to choose to fight.   Fight for joy, fight for peace, and fight for Veya to receive the best care possible.   That best ...

Not only has it been three weeks since our transfer back…. but today we celebrated Veya’s half year birthday!  We can’t believe it’s been six months already living out the ICU hospital life with our heart warrior.  When I sit and think about that for a moment, I’m met with a lot of different emotions.  I’d be lying if I didn’t admit that it stung a little. You know, I had this picture in my head of how I thought this journey with Veya could go. I had it mapped out, what the future could potentially look like and where we would be with her at six months. I naïvely thought at best we would spend two weeks in NICU and at worst we would spend one month in NICU. When we passed that timeline, I adjusted my goals and was hoping we would be home before she was six months old. I imagined being able to enjoy the simple things with Veya like sitting in the back yard soaking up the warm weather with her brother and sisters. Now reading back on that statement I can see that in some wa...

Yesterday marked three weeks since we have been back “home” from Toronto.  While it has been nice to be back all together under the same roof and closer to our family and friends, we are still adjusting to the change. We miss seeing our core medical team from Sick Kids and the friends we made at Ronald McDonald House.. and are still trying to sort out our new routines around the house here.  I wanted to take a moment to highlight and thank some very special individuals from Veya’s Sick Kids Team as we didn’t get a chance to personally say goodbye to each one of them.  I know many of them are following along here on her blog here, so it is my hope that it will reach them. First off, we’d like to thank Dr. Oshri Zaulan.   This man right here was one of Veya’s core CICU Docs.   He was the one that orchestrated her transfer to Sick Kids in February, and he advocated so much for her during her stay.   He knew to take everything slow and steady with Veya, never...

"Though I walk in the midst of trouble, you preserve my life; you stretch out your hand against the wrath of my enemies, and your right hand delivers me.  The Lord will fulfill his purpose for me; your steadfast love, O Lord endures forever.  Do not forsake the work of your hands."  Psalm 138: 7-8 Hello from McMaster’s PICU! Yes, you read that right 😊 …we have been moved back to Hamilton and what a whirlwind of three weeks we just had!   Veya was transferred back to McMaster on Monday (May 13 th ) and it went a bit smoother than her last transfer. (How we feel about it is a very loaded answer, we love both hospitals for different reasons but I’ll save that for a later post) There have been so many moving parts, it made it difficult to hop on here, but now that we are settled in and the mental gymnastics have calmed down a bit….we are back with an update!   As you can see, the Sick Kids team switched gears again and they decided to just go for it and perform...

Quickly stopping in here again to say hello from the Ronald McDonald House 😊   I had to leave Veya’s room for the time being as the team is about to perform a procedure for one of her roommates….so while I wait to be let back in I thought why not go have some lunch, soak up some of this beautiful sunshine, and pass along another update to everyone! (Please bear with me as I try my best to explain what the next little while is going to look like for Veya and our family.) For those of you who have experienced living the hospital life, you know all to well that plans and schedules seem to change faster than you can blink.   This morning I learned that Veya’s team has decided to forgo their plans for conducting a standard MRI and are currently working out new plans to send her for a more specialized MRI test called a MRCP.   Through this test they will be able to look at the bilary and pancreatic system in much more detail for the pockets of fluid (cysts) and blockag...