Return to CHLA
As I write this I'm waiting for Lisa and Jack to arrive home from Children's Hospital after an overnight stay for Jack's sleep study. The results of this test will determine whether Jack will continue to need supplemental oxygen when he sleeps (he no longer needs oxygen support when he's awake). We've been anticipating this study for months now. If his lungs test well it would mean that he'd be free of supplemental oxygen for the first time since he was born 18 months ago. It would mean getting rid of miles of oxygen tube strung through the house. It would mean no more machines or tanks. And no more cannula. It would be a major milestone.
We took Jack home from CHLA almost one year ago to the day and thankfully he hasn't needed to go back for anything other than regular checkups since then. For those who have asked how our family is doing, here's an update.
Psalm 66:5 - "Come and see what God has done: he is awesome in his deeds toward the children of man."
Still Mighty. Not So Tiny.
Jack is thriving. In the short space of a year, the Lord has answered our prayers and so much more. This fragile 24 week micro-premie who we thought may never see the outside of a hospital has developed into a strong, adventurous toddler who loves to explore, make his sisters laugh and get into everything! He's become the family entertainer, has a contagious laugh, loves music, and thanks to his sisters has learned to hum phrases from Frozen 2. They are delighted.
At 14 months (adjusted) our little miracle boy started walking and he's been exceeding his developmental markers to the point that his therapists have to come up with new exercises to challenge him. The last remaining concern is his lungs. All of his medications center on his lungs and some of you will recall that he came away from the NICU with considerable scar tissue due to being on a ventilator. That has prevented his body from getting the oxygen it needs apart from supplemental assistance. Our monitor at home indicates that his lungs have started pulling their weight, but the sleep study results will confirm if that's the case or not. We'll be counting the days until we get word from his doctor and will post the results here when we have them.
God Is Faithful
When you're a premie parent, you're always looking ahead to the next developmental milestone, reading into everything your child does compared to "normal kids" and wondering what challenges could be ahead. Sure, the news is good now but there are no guarantees. It wasn't that long ago that doctors were telling us about Jack's risk for cerebral palsey among other potential maladies. Those conversations loom in the back of our minds. We do our best to celebrate every victory and take one day at a time because that's all we've been given. Some days we succeed at that, and some days we give into an anxious heart. There is grace in the awareness of our frailty. The Lord is patient with us as we grow.
We're thankful for how God has chosen to heal and bless Jack, but every day we strive to find our rest in his merciful character and sovereign will rather than our circumstances. If Jack has a setback, God will still be good and his ways perfect. Today we can rejoice that by God's grace Mighty Jack is getting bigger and stronger and excelling in every possible way. Our hearts are filled with thankfulness!
What A Difference A Year Makes
Last Sunday was especially sweet for our little family because it marked Lisa's first Mother's Day with all three kids together. We drove to Ventura to take advantage of the newly re-opened beaches and enjoyed a gorgeous Southern California day. I wish I had the words to convey the countless expressions of love, sacrifice, tenderness, humility, resilience, joy, grace and endurance I have seen as Lisa pours herself out on a daily basis. I am constantly blessed and confronted by her tireless and faithful example as she gently serves the needs of three little ones along with all the extra considerations of Jack's care. This season has been hard. It's been excruciating at times. And there's no one I'd rather be in the trenches with than my beautiful Lis. What a gift she is to me!
Thank you to so many of you who have prayed and linked arms with us throughout this journey. You are precious to us and we love you. Please continue to pray as you think of us!
"My heart is filled with thankfulness To him who reigns above, Whose wisdom is my perfect peace, Whose ev’ry thought is love. For ev’ry day I have on earth Is given by the King; So I will give my life, my all, To love and follow him.” — "My Heart is Filled With Thankfulness" by Keith Getty and Stuart Townend