Prayers, Setbacks, Purell and Blessing - By Todd

I am a blessed Daddy in so many ways. Through this journey with Vivien, I’m reminded how precious life is. I realized I’ve never thanked God for giving my first four kids a complete set of chromosomes or a heart without defect. While I have prayed for the health of our children, I take it for granted that they can breathe on their own and circulate blood without problems. It’s these little things you don’t realize God gives us until something stops working “like it should”.

Our first few days at home have been busy and full with much time spent holding her, feeding her, driving to doctors appointments, friends bringing meals, laundry loads, lots of purell and doing all we can on very little sleep to keep Vivien healthy. Yesterday, we had a follow up appointment with Vivien’s Cardiologist. She’s a great doctor who we feel has been a real advocate for Vivien. The echo-cardiogram showed that she is starting to shunt too much blood to her lungs already, which may lead to congestive heart failure. The doctor prescribed Lasix (a diuretic), which we've started. Over the night, Vivien spiked a temperature and has had some diarrhea. She also had some very low oxygen saturations, which is not good. We are grateful for the pulse oximiter, which alerts us and helps us to wake her slightly to help her oxygen come back up.

While at first, we were so glad to see her make so much progress, it’s been hard to see these setbacks. It’s not that we weren’t warned about what may be ahead, but I’ll admit the positive improvements convinced me our girl would “beat the odds” and not suffer the setbacks so many other kids with T18 endure. We are staying hopeful and trusting God. Please pray with us about what lies ahead and wisdom in how to help her. We don’t want her to suffer needlessly. Ultimately, we know she will be healed and every cell of her body will be complete. We want to work with her and work with God in His will for Vivien as we pray for her healing, whether it is on earth or in heaven. We want to fight with her for her life.

Today, we are celebrating 16 days of a beautiful life. Vivien has only compounded the blessing that comes with being a Daddy. I’m grateful for every moment with her. The kids have sung many songs to her. “Happy Birthday” has become a familiar tune and we now have several stuffed animals with NG tubes and syringes. Our lives have been shaped by nearly 5 pounds of blessing and we are hopeful and prayerful for many more days, months and years. Thank you for your continued prayers for us and for her.

Our prayer warrior Bernie, posted this today: "Fear not, for I am with you. Do not be dismayed. I am your God. I will strengthen you; I will help you; I will uphold you with my victorious right hand."Isaiah 41:10 TLB. We are so glad that Vivien is in His hands.