This morning Louis, my mom, Morgan, Lily, and I stood around David’s crib and sang hymns and read scripture. Louis read Romans 8:28 – “And we know that all things work together for good to them that love God, to them who are called according to his purpose.” As we began day 22 at Lebonheur, I have to admit this verse was hard for me to hear. Is this good for me? I’m physically and emotionally exhausted. I haven’t been home in three weeks. I miss my family. Lily is confused. My baby boy has been through so much in his short three weeks of life. I do believe this verse, but had to stop and ask God to help my unbelief. I want to fully believe this verse. I want to know it in my heart – that this trial is good for me; it’s good for our family.
So where are we on day 22 of our journey? Praise the Lord I can tell you that David has been declared “stable.” Cardiology and surgery have released him from their care, and we have been moved to Pod C in the NICU. They move babies to Pod C when they are ready to “eat and grow.” We were excited when they told us to pack our bags we were moving down the hall. David has the feeding tube down his nose, but he still continues to make progress on his total amount consumed on his own. Two days ago he hit 88% of his goal feedings. Yesterday was 75%. Today looks like it will be a good day, too. The doctors are actually very encouraged about his eating progress. Children with Down Syndrome are notorious for being poor eaters. The Down Syndrome in combination with the heart defect makes eating a challenge. Heart babies need more calories, so they are adding 4 calories of formula per ounce of milk. He receives a total of 64 extra calories a day. It feels like a balancing act. He needs the extra calories, but too much liquid can strain his heart and not enough liquid can dehydrate him. Thank the Lord for doctors and nutritionist who know exactly what David needs.
As a mother, the feeding tube was difficult for me. I have to remember what so many are telling me – this is one of the first issues we are facing with David. Brother Isaac told me a few days ago too remember this will be a marathon for us. We are in the first mile. Please pray for me to patient and endure.
Love to all