A Big Step!

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 ways I was trying to be the author of this journey.  That I could maybe try to control and determine when each chapter ended and how the next one would unfold.  But that isn’t how life goes, we are not the authors of our lives, God our Heavenly Father is, and He is working all things out for our good and more importantly for His glory.  Every day we are having to let go of our plans and expectations, surrender it all to God. He will continue to make a way even when it feels at times like there is no way or no end in sight.

And today God made a way!  For the first time in six months Veya has graduated from ICU!  She was transferred from level 3 in PICU down to the Pediatric Complex Care Unit. Praise God for this big step!  We got to celebrate with the team and even with a familiar face – Bruce Vermeulen, who helped get us settled in her new unit! Veya has been able to successfully wean from her morphine and by the end of this week she should be completely weaned off her last med called Clonidine which was brought on to help her with withdrawal symptoms during the large weaning process of all her pain and sedation medications.  She continues to do very well with coming down on her respiratory support as well.  She is still currently on high flow but there is discussion in trialing her on low flow soon. 

Veya has spiked some fevers the last couple of nights, so the team has run all the tests to see if they are chasing down yet another infection.  They are also ruling out if she is spiking them from the medication weaning process, or if her liver is experiencing a flare up called cholangitis.  We should have the results in the next few days. 

Veya has also been struggling with weight gain since being at Mac.  When she left Sick Kids she weighed 12.5lbs and she currently weighs 10.3lbs.  The team has had to fortify her feeds further to help her gain weight.  They are not able to go up on the volume of her feeds because the extra fluid can cause stress to her lungs and heart.  There could be a number of reasons why she is struggling in this area, which the team is exploring. 

Tomorrow Veya will have another echocardiogram done to check her heart function and look closer at her pulmonary hypertension.  Please pray with us for Veya’s heart health and the doctor’s wisdom, even more specifically that we may have favorable results in regard to her pulmonary hypertension, that it can resolve on its own in due time. 

With gratitude in our hearts, we thank everyone who continues to intervene in prayer for Veya and our family. 

"Whenever your heart starts to be anxious about the future, preach to your heart and say "Heart, who are you to be afraid of the future and nullify the promise of God. No, heart, I will not exalt myself with anxiety. I will humble myself with peace and joy as I trust this precious and great promise of God - He cares for me." - John Piper