When Travis and I stepped into Ned's room this morning, it was noticably quiet. The oscilating vent (typcially sounds like a go-cart engine) which was supporting the little boy in the back corner last night was turned off. It was an erie silence. I witnessed such loving kindness from the doctors and nursing staff today as they prepared that little, young family to let their little boy go. They had taken him off the vent so that little mama could have some time to snuggle her precious child in her arms for a while. They took them into a private room where they could spend their last moments with their son in private. Some of the nurses brought their cameras from home (which are much higher quality than the NICU cameras) and took lots of pictures so they would always have some family photos. They had called "Now I Lay Me Down to Sleep" (great organization, if you want to look it up), but they weren't sure if they were going to be able to make it in time. It turns out that the professional photographer showed up so the family will recieve double the pictures. They made that little boy and his family their top priority when they had nothing left to offer them but love. It was a true picture of Jesus in action. They went out of their way and picked up each other's work load to lavish acts of kindness of these very desperate little parents in their time of struggle. While it was heart wrenching, it was truly beautiful as well.
While I was feeling very bogged down the past several days with impending tests and set backs, today I have been overcome with a feeling of thankfulness. I suppose it began last night as Travis and I listened to the doctors explain to the family that their baby probably couldn't survive through the night. They asked, "to what lengths do you want us to go to keep him alive?". From across the asile, I wanted to yell, "to great lengths.....do whatever you have to do." But that little mother, who couldn't have been over 20, contemplated all the options and weighed what she believed would be beneficial and what may just be too painful and stressful for her young son to endure. I admired her courage and selflessness. As I internalized the situation, I wondered if I too could have removed my emotions enough from that situation to be that analytical....I doubted it. I have just felt a real need to continually thank God that He didn't lead me down that path....that Ned's fate didn't include a round table discussion with all the doctors about Baptisms, burial clothes, choices of funeral homes and determinations on how to spend out last moments with our child. If I ever feel overwhelmed by a test, procedure or surgery again, I will go back to that moment when I knew how very blessed we were.
The thanksgivings continued this morning when I checked in with Ned's nurse and she said he hadn't spit up all night. In fact, he didn't spit up, throw up or reflux all day long. He gagged about 3 times all day, but it was very anti-climatic. I have just been so thankful that my little man got a day of rest. He really needed it.....he was starting to look a little sickly again. He had lost a couple ounces over the past 4 days, but tonight he headed back in the right direction with the weight again! If we continue like this (please pray that we do), I'm sure we'll wait another 2 weeks before we perform the final surgery for the feeding tube. I'm still uncertain what kind of feeding tube he will receive, but we'll just wait and see. I am only sure that all the prayers about Ned's refluxing certainly have given the child a reprieve...thank you all so much!!! I think we should just mostly be hanging out most of the week until the end of the week when we're going to try for the MRI again.....so if you can keep that in your prayers as well....I hate to keep piling on the requests?!
I love you all for praying for our family so faithfully. When we are in times of struggle, I can feel your prayers carrying us through the darkness. You cannot imagine how your words of encouragement move me and how the inspired Bible verses I recieve speak to me in my moment so perfectly. There are certain spiritual experiences that are cornerstones for shaping your relationship with Christ....this will certainly be one of mine and each of you will have played a very real part in the works that God is performing in my life daily. So if you ever get to a place in your spiritual walk where you feel like God doesn't use you, think of me and know that He has, He does and He will.
Much love and many blessings!
Betsy, Travis, Jack & Ned