Abi and I both stayed at the hospital last night. Yesterday during rounds, the doctors and nurses told us that David was eating well enough for us to go home today or tomorrow. We were obviously excited and relieved that we would be able to have our family together as a whole, in the comfort of our own home. We decided to stay with David through the night to make sure that he continued to eat the required amount.
Well… we are not going home today. Immediately after we were told we might go home, David’s eating began to decrease. Little by little his eating has gone from 60-65 cc’s to our previous feeding at 13 cc’s. The nurse has put his feeding tube back in, and we are tired and disappointed. Our hope has been postponed, and our hearts are grieved.
I have thought a lot about the time in John chapter 9, that the disciples asked Jesus why a certain man was born blind. Jesus’ answer: God was using the man’s blindness to manifest His works and glorify Himself. While a lot could be said about Jesus’ answer, the underlying assumption that has spoken to me again and again is this: God is the main character in this story.
It is easy for me to process all of this as if I, Abi, Lily, or even David is the main character in our story right now. However, we are just part of God’s greater story of redemption. God is using our lives as well as yours, to manifest Himself to the world in some way. I must remind myself, this is not about me, it is about God receiving the honor and glory that is rightfully His. If that means that we must stay here a while longer, then it also means that God will continue to supply our every need. Life isn’t all about me. If I let my feelings and desires dictate what ought to be, I will live a miserable existence. However, If I can strive to honor God in the wilderness of life, it will be a life well lived.
Today was a good day. David has finished 8 out of his last 9 bottles. This has been our best feeding day. Dr. Ferguson decided to add more calories per feeding and decrease his total number of liquid to 60cc per feeding. His weight continues to increase, so we are hopeful we will go home soon. The doctors put David on some medicine yesterday that will help him get rid of the extra fluid that his body holds due to the heart condition. Cardiology ordered an ECHO and chest x-ray, and we were thankful to hear that there have been no changes to his heart.
David is now able to wear normal baby clothes. He will be 4 weeks old on Saturday, so it’s been fun to finally have him dressed.
It is not uncommon to hear people comment on the life of Abraham and marvel at the fact that he set out on a life journey in which he had no idea where he was going nor what he would do when he arrived to this uncharted destination. Isn’t it amazing that one life, one uncharted journey, could have such a profound impact on the world as a whole? What’s even more amazing, is the fact that when we look at Abraham at the end of his journey, we find that it wasn’t uncharted at all, it just happened to be charted by someone other than the traveler. Abraham is not unique in this sense. Whether we realize it or not, the road of unexpected surprises that catch us off guard, are gentle nudges by the hidden hand of God that redirect us in ways we would have never gone otherwise.
My struggle today is that I do not want to be the traveler anymore. I would not describe myself as a person who has to be in control. I can pretty much go with the flow and even enjoy watching things naturally play out. I am reminded today, that there are no definitive statements that accurately describe an individual. We all have the same capacities, they simply function in varying degrees. Today, I struggle with wanting more control over my journey. There are things I would change: I would be home right now; as a matter of fact, we would have been home three weeks ago. My little girl would not be confused and so easily upset. My wife and I would be holding a little boy with no wires attached
Sometimes we struggle in life because we do not understand what we see. Other times we can’t see what we understand. I understand the fact that I lack the resources to be in control here. However, the process of actually seeing this reality is difficult to come to grips with. Our lives are in the hands of a loving God who is charting our course. Our part is to travel, it is the only thing we are equipped to do.
*** David is having a good day. They removed his feeding tube, and took his picc-line out. The doctors and nurses are encouraging and we hope to come home soon.
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
There is absolutely no doubt we have experienced the weight of this verse while we have been here. Friends from family, church, work, and other areas of life have come along side us to provide encouragement. I would like to focus on a special friendship during this post. Lily and her cousin Charlie are very close friends. Lily has needed a good friend during this time, and Charlie, as well as her other cousins, have been great. Yesterday, Charlie came to visit so we decided to take a trip to the zoo. We all packed up around 12:00 pm (Lily, Charlie, and uncle daddy [Louis]) and took off. We grabbed 3 maps and charted a 6 hour course that would cover almost every square inch of the zoo. I think I enjoyed the day as much as the girls did. After we arrived back at Lebonheur we ended the day with a special supper in the cafeteria. This was just the kind of day Lily needed, and we are so thankful for her cousin and good friend, Charlie.
Here is a short slide show of our day
Lily, Charlie, and Uncle Daddy at the Zoo
I Ain’t Afraid Of No Bottle!!!!