Twelve days ago, our lives changed. I am not so sure I was ready for this storm. Over the last twelve days, we have experienced incredible peace, joy, sorrow, fear, support and love. We have loved on Amelia as much as we could as we watched our little lady come into this world, be connected to more medicine pumps, life support and monitor machines and receive more attention from doctors and nurses than anyone should get in a lifetime. Now, we wonder: Are we ready for what is ahead? Are we ready for this storm?
There have many ups and many downs. One of the lowest points for us in Amelia’s life was after watching her be wheeled away for surgery and Kim and I returned to her empty room. The feeling of complete helplessness overwhelmed us as we started to wait for her return. I think that was only beat during the seconds and hours after Amelia’s return from surgery. I do not think I can lie on the floor and get as flat as Amelia was on her bed, sedated and filed with pain medicine, following surgery. Our hearts fell through the bottom of the basement of the hospital (from the 5th floor) as we watched our limp little peanut on her bed as her chest rose and fell with the precision of a machine as the respirator ensured she got the oxygen she needed to continue to live. In the days since, we have experienced many other emotions: Her first cry following surgery and the removal of her breathing tube, the joy of seeing her first dirty diapers, excitement of seeing the first time we tried to give her a bottle to feed from and the scares as monitors start to beep when vital signs fall out of her tolerances.
We have been overwhelmed with the love and support we have been shown by friends and family. We have had many visitors who have taken the time out of their day to provide us love and support and a meal while we have been in the hospital. We have been overwhelmed with calls and emails. We could never have imagined how much love we have been shown. We have experienced people being the hands and feet of Christ these few weeks.
And yet we have a peace that can not be explained. We were given nearly 4 months to learn and understand the condition our child was given. We were given 4 months to prepare our minds and hearts and lives for the changes that were coming. We were given 4 months to gather a group of friends and family who would pray for us and lift up our needs to the Father who knows all things. We were given 4 months to learn what life will be like as we start to prepare to go home.
That preparation has begun. We have started to learn about medicines and machines that will be at our disposal to care for our peanut. Our Pulse-Ox pump was delivered. We will use this machine to ensure the oxygen saturation of Amelia’s blood is sufficient to maintain life. We received our feeding pump, which will allow us to feed Amelia when she becomes too tired to drink from the bottle. We have an entire 3-ring binder filled with instructions and information and phone numbers for those that care and are able to help. We have begun to learn what it will take to care for our peanut once we are home.
We have had a reality check once again. Earlier this week, we started to get a picture of what the next 6 months of our lives will look like. We were given a list of numbers of nurse practitioners we can call at any time with any question or concern. The statistics prior to the CHEF program that we are enrolled in was developed was that 30% of the single ventricle babies sent home following their first surgery died at home. The support network we are now a part of has lowered that to about 4. Yet still, we completed an infant CPR class this week. We have a number we can call with a trained nurse who can answer our concerns, who can provide a recommendation ranging from “Everything is OK” to “Come visit us in the morning” to “Hang up right now and call 911!”
As we look at our last weekend in the hospital and toward our first days, weeks and months home with our Amelia, we wonder: What will the next months look like? Yet, we charge forward with the grace, peace and knowledge that God is our comforter and will be with us. He will provide for all our needs even before we ask.
So, right now, all we can say is, unlike the words from the song by one song writer: We are not sure we are ready for this storm!
Brian
Brian
