In the Waiting...

"I wait for the LORD, my soul waits, and in his word I hope" 

- Psalm 130:5

In the waiting, I’ve quickly learned that life keeps moving and so should I. Baking our favorite sweet treats on Saturdays with our children has become a small, joyful practice, reminding me of God’s goodness in the little things.  Those warm, gooey treats aren’t just a delicious snack, they’re a reminder to savor the sweet moments, even in the challenging seasons.  Scheduling that much needed rest care, even if it’s just for an hour, or a week/two break form the hospital… has taught me that taking care of myself is important too. It’s about stewarding the life God has given me even in the midst of the waiting. 

Also discovering the importance of celebrating inchstones… not just milestones, recognizing that each tiny step is a tremendous victory and blessing.  Advocating for Veya has revealed a strength I never knew that I had within, pushing through exhaustion because her potential is limitless in God’s plan.  Finding humor after the unexpected moments, like another g-tube delay, has shown me laughter truly is good medicine, even if it doesn’t feel like it in the moment (and trust me we have had A LOT of unexpected moments on this journey, even in the last few weeks alone!)

In the last update we were waiting to hear when Veya could go safely for her second ERCP procedure.  Thankfully the team was able to move ahead with that one rather quickly and were quite happy once again with how she tolerated the procedure and what they were able to do once inside.  They removed the stent that was placed in there the first time which helped a large stone be able to break down.  They removed all remaining debris and gave her main bile duct a “good cleaning”.  They were expecting to have to insert a new stent to help keep her bile ducts open to help the bile move more freely but they didn’t see a need for it which is great news!  Once the full ERCP report came back, the liver / GI team reviewed it with me and said that overall, they were quite pleased with everything.  They noted that there was some improvement in the shape / health of her bile ducts compared to the last time they went in.  There are still abnormalities with her bile ducts, but we are so thankful to hear that they saw some slight improvement!  A few days later they came by again and were happy that her jaundice levels were all in normal range for once and that her liver enzymes were very slowly trending downwards.  (Now since that time they have trended downwards but have also increased a little bit too, they are kind of doing a song and dance pattern, but the team is hoping that maybe in due time this can self-resolve…though no one is certain just because they have never seen these sorts of characteristics in a liver before and we are still waiting for that last genetic test to come back)

Veya was also scheduled to go for an extensive eye examination by Ophthalmology last week Friday, unfortunately they had to cancel that last minute due to an onset of new fevers.  (We are hoping to reschedule this when Veya has recovered as it’s a very important assessment needed to prevent her vision from remaining in 2D instead of 3D as well as to prevent a lazy eye)

 Thankfully we were able to identify the source of the fevers and Veya has since been receiving yet another round of antibiotics to treat a second PICC Line infection. She will finish the antibiotics this weekend.  Another unexpected discovery this past week was that Veya has developed her first respiratory virus.  It will need to run its course, and the team is supporting her by switching her back over to the heated high flow oxygen as her work of breathing has increased.  The very unfortunate part about Veya catching a respiratory virus is that this significantly delays her g-tube procedure once again.  The cardiac anesthesiologist needs Veya to fully recover from the virus and then wait 4-6 weeks after in order to be placed under the anesthetic. With these specific viruses they can go dormant and then start up again and its high risk putting anyone, let alone someone who has cardiac issues along with chronic lung disease like Veya (her pulmonary hypertension) under an anesthetic.  Everyone’s goal was / is to get Veya home by her first birthday but the chances of that happening now are looking quite slim.  The positives that we are holding onto here is that we are thankful this first virus encounter got to happen here within the hospital so we could all see how Veya’s lungs could handle it, and it also allows her to be able to build up immunity to it should she come down with this specific resp. virus again. 

Aside from the medical updates, we have some exciting developmental updates too!  As some of you heard, Veya was finally healthy and stable enough to leave her hospital room for the very first time (not counting her three ambulance transfers) and go for her very first ride in the stroller! A moment that I have been longing for!  I’m thankful I got to take her out and around the hospital floors for a few days earlier this month and she even got to spend some time visiting Sick Kids sensory room (such a cool space!). We currently cannot take her out in the stroller because she is in isolation for her PICC line infection and her respiratory virus.  And it sounds like the team may want to just keep her to her room until she is done with the g tube as well.  This moment will be forever etched in my memory, with the entire nurse station clapping and cheering us on!

Veya is continuing to do well in feeding therapy and enjoys the little bits of purees.  We are really working on the oral aversion, and she’s come such a long way because she is now a thumb sucker!  We are officially 4/4 with thumb suckers around here and are actively trying to get the two older girls to retire it but we are just so excited to see this in Veya and it’s cute.  It’s not ideal for her oral health but it’s a huge win when you’re talking about severe oral aversion. 

The abilities team along with music therapy have been singing and doing sign with Veya repetitively….and now we have Veya clapping all on her own!  She loves to copy you and will bring her hands together to clap back!  We stand in awe of these moments because we truly thought we wouldn’t get to see these days with Veya.  They are just so special!

We are also happy to share that Veya has no new reports of any fractures.  Her wrist fracture also healed beautifully, and her cast was able to come off a little while ago now.

We are constantly learning to not compare (for comparison is a thief that truly steals your joy) and embrace Veya’s unique timeline, not society’s or our own expectations, but continuing to trust in God’s perfect timing. For a long time, it was easy to be hard on myself or critical of my “open book personality” but in this and through this God is showing to me that vulnerability is a strength, sharing both trials and triumphs with friends that become family set apart on a similar path, because we’re meant to endure together.

In this season of waiting, hope remains my anchor.  Our anchor. We keep dreaming and believing that Veya and our family’s future is bright, even when the path looks different than we imagined – because we serve a God of infinite possibilities!