"Never early, never late, but right on time"

 "For everything there is a season; and a time for every matter under heaven"

Ecclesiastes 3:1

There is this quote on God’s timing that I just can’t get enough of lately.  “God is never early, never late, but right on time.”

And unfortunately, I can have this microwave mentality (especially as of late) with God where I want everything right now, I don’t want to wait anymore….haven’t we waited long enough.  But God is never early. Why? Because if He just gave us everything whenever we wanted…how would we develop faith and trust and patience?  God’s also never late because He’s not a mean God, He’s not a vengeful God, but He’s right on time.  Proverbs 16:4 reminds me that God made everything with a place and a purpose and in Ecclesiastes 3:1 it says there is an appointed time and season for everything.

So, while we continue to be in this season of waiting for answers and what steps to take next with our daughter, we must remain obedient to God, pursue God, and seek Him because at the right time, in His perfect timing, His plans for our daughter and our family will not pass us by. And in that, I found my comfort as we headed into this new week with Veya.

Our little heart warrior continues to fight!  She has quite the battle ahead of her but if anyone can do it, it’s Veya.

 Her recent scans show that the respiratory therapies and treatments are working! The pneumonia is starting to clear from her lungs!

The goal for this week was to continue with the respiratory treatments and help get Veya back to her base line (back to her best) so that next week they can plan for repeating the heart catheterization procedure for her pulmonary hypertension.  Overall, the week went okay, there were some big wins to celebrate and then there were some setbacks that the team needed to help her through.

The first big win for Veya was that she went 14 hours without her Nitric!!! This one brought me to my knees in tears I was so excited for her and just so thankful to God for this breakthrough! It also helped provide some direction for the team.  They believe that the pneumonia was part of the picture for Veya while she was still at McMaster, making it challenging for her to come off it when they attempted it in the past.  Though they still feel strongly that Veya is struggling with some significant pulmonary hypertension.  Veya is currently back on Nitric because she began to struggle with lower oxygen saturations, and there are discussions happening about trying her off it again come Sunday once she is finished her antibiotics for the pneumonia. 

 The second big win is that Veya has been taken off her Milrinone medication.  This is the medication that helped with the weak pumping of her heart.  I did not realize that they removed it from her list of medications back on February 20^th and her heart continues to pump well and strong on its own.  There are still no answers as to why this was part of the picture for her, we did have extra genetic testing done but as mentioned in a previous post – it came back inconclusive.  We pray that her heart can continue to pump well for her.

 The third big win is that Veya is growing well and maintaining good weight for her age.  With cardiac babies they do struggle with weight gain because their heart is working so hard, they burn through a lot of calories.  Therefore, when it comes to feeding, most of them need their milk to be fortified with formula.  Veya no longer needs the fortification and is back to strictly breastmilk. This also means that they are not as concerned about her fluid retention, seeing as they are able to go back to her full feed amount. Her body continues to respond well to her diuretic medication that helps her pee out the extra fluid when it builds up by her lungs and heart. 

 While we have thankfulness in our hearts, we still carry concerns along with her team as to why she is struggling with maintaining her oxygen saturations and experiencing a low heart rate from time to time.  She was stable in this area at the beginning of the week, unfortunately in the early part of Thursday evening, she coded again, her heart rate dropped to the 40s (normally she sits between 120-150) and her oxygen dropped to 15 (when it needs to remain 90 and above) The team believes it could be a combination of things.  They did an x ray and can see that her breathing tube is sitting a little too deep.  They also believe she is building up tolerance to some of the sedation medication that they are giving her.  As well as the ongoing pulmonary hypertension issues.  They have brought in a new sedative medication (they held off on this one because it is harsh on the kidneys, however they don’t have a choice right now and need to keep her calm so that her numbers can remain stable) The pulmonary hypertension team is planning to come by her bedside Friday morning and discuss other options to help improve things for Veya.

 This continues to be an epic expedition of trust that’s for sure.  Over and over, turning to the One who made Veya, wonderfully and remarkably, and relying on His strength in our weakness.

 The Lord continues to be gracious to us in so many ways! We count you, your prayers, and your help as blessings from Him.  Thank you for ministering to us in these ways.  We especially want to thank you again for the ongoing meals, phone calls, babysitting….filling our cups with encouragement, pointing us always back to the Author of Life.

 We receive so many messages asking how you can help and honestly prayer is the biggest way you can continue to walk alongside us. There is so much power in prayer and we truly feel it week to week.  There has also been a go fund me page, started up by some of our family members recently, in hopes of supporting us in a financial way with the additional costs that come with being further away from home as we have now transitioned to Toronto Sick Kids and we truly appreciate your consideration in supporting us in this way. Go Fund Me - VanderBrugghen Family 

You all have lived out Hebrews 13:16 in our lives and for that we are so incredibly thankful for!

Tonight, I’m choosing to let go of today’s worries and continue to trust that God is at work in every single detail of my life.  Of our family’s life and in Veya’s intricate and complex life. 

Continuing to stand on God’s promises with you all;

 

Jeremy + Krystal