God's Plans are Greater than Ours

"It is the LORD who goes before you.  He will be with you; He will not leave you or forsake you.  Do not fear or be dismayed." 

Deuteronomy 3:18

I must admit, there are days when the fatigue really sets in.  Emotions are high. Sleep is minimal. Normal life demands are still present, and the list goes on.  When I heard the song “Don’t quit” by Jordan Smith the other night, it hit me as deeply relatable. Most of the time I’m doing fine…(we’re doing fine) enjoying our new friends here at the hospital, chatting with our nurses, reading good books, enjoying our visits with Veya (just longing to be able to hold her again) But now after 65 days here it feels like it’s all starting to catch up a bit to us.  Especially because we can’t see a possible end in sight, and neither can Veya’s medical team yet as her health situation remains very complex.  

It’s difficult leaving Veya after every visit we have with her and it’s equally as difficult leaving our other three kids when we go to the hospital.  It’s hard having the family feel so divided. It’s hard not being able to be the one to care for Veya 24/7.  My head knows all the right truths and truly believes them, like God’s timing is perfect, He has a good and perfect plan for Veya, and I can trust Him entirely, but my mama heart still hurts.  NICU life is a roller coaster.  They tell us repeatedly, two steps forward and one step back.  But we aren’t quitting, and our little girl is going to do magnificent things to magnify the Lord!

This week, the goal was to successfully wean Veya fully off her Nitric Oxide Machine. The team had planned to do this Monday, however there was much back and forth debating going on between everyone that it took them until today (Wednesday) to do it.  They increased Veya’s sildenafil medication to it’s max.  They significantly increased her respiratory support before turning off the Nitric machine but unfortunately her oxygen stats still dropped once they removed it and they needed to turn it back on.   

So what are the next steps for Veya?  

A transfer in care.  The team is currently working out those details and waiting for a bed spot to become available for her over at Toronto Sick Kids.  Once at Sick Kids they will perform the heart catheterization procedure to get an accurate reading as to what is going on with her heart and lungs.  Once they receive the results from this procedure, it will hopefully guide them in what to do next. 

At this point in time, we don’t know how long Veya will be at Sick Kids. It depends on a number of things, what they discover from the heart catheterization for one.  If they decide the PA band procedure is needed next, that will add additional time to her stay.  If they feel that she is too fragile/critical to go back to Mac they will not risk destabilizing her.  If they feel like open heart surgery will be in the next number of weeks they may also decide to have her stay until then. 

The team has also decided to leave her PD Catheter in her abdomen (this is for her dialysis).  They are currently not running any cycles for her because her kidneys continue to do well but they feel it’s best to leave it in should the need arise for dialysis as she goes through upcoming procedures. 

She continues to struggle a bit with fluid retention from her heart defect, but the team was happy to see today that her diuretic medication is finally kicking in and helping pull out some of the extra fluid.  Hopefully in a few days her puffiness/swelling will go down.

Outside of Veya news… and before I sign off here for the night… I just wanted to also take a moment to say how truly blessed I was by your thoughtful birthday wishes yesterday.  Your kind words are a reminder of God’s grace in my life. The phone calls, the texts, the sweet gestures, and gifts really brought me joy.  Thank you for making the day feel so warm and special.

With sisterly love,

Krystal

Prayer Requests:

1. Please pray for a smooth transition over to Toronto Sick Kids, that Veya may remain stable during the transfer

2. That we can adjust well to this new change and especially for our other three children that will be spending more time away from us. 

3. For her new medical team at Sick Kids, that perhaps they may be able to find the answers needed in order to best treat Veya and that they may have success in removing her from Nitric 

4.  That no complications arise from her upcoming procedure and that it may also provide further insight that is needed with her heart defect.  Please pray that nothing severe or compromising may be found from the tests results.  Specifically no lung issues or chronic pulmonary hypertension.