I can hardly believe we are starting our third week with baby Noah and Jonah. Thank goodness when I called early this morning Noah had tolerated being placed on his right side to collapse his lung for most of the night. They were able to reposition him so as to aerate both lungs and see if the collapsing yesterday did any good. A 4:00 x-ray this afternoon showed some improvement, not total improvement, but some. So the doctor ordered that they see how Noah would do tonight being repositioned on his left side. When we went in around 8:30 his oxygen was fluctuating so it will be interesting to see how he does throughout the night. We are praying that his lungs will improve, that he will gain some strength and need less oxygen. I would hate to see him get as bad as he was yesterday although the likelihood is very high. They also were able to lower his Dopamine levels a bit, we'll take whatever improvement he makes, even if it is a little at a time.
Little Jonah is doing the same, which aside from his bleed is good. His vitals are strong and other than requiring a bit more oxygen he had a great day. Bad news was his head circumference went up by a 1/4 of a centimeter. We do not want growth at all, as this is one of the ways in which they are able to determine if the hydrocephalus is worsening. I will never cease to pray that this issue will resolve itself without requiring surgery. I know realistically the odds and I know we still will most likely transfer to UCLA but I determined today that this is no reason to stop praying for a small miracle.
Today I told myself that I have to keep having incredible faith, strength and an unshakable belief that my boys will make it through their challenges against all odds. Sometimes I think that maybe God is giving me the opportunity to prove him, to really show that if I trust him and have faith Noah and Jonah will be the miracles that they really are.
Another thought that came to my mind tonight, both my boys are fighters. Both are fighting the odds to stay alive and every day is a blessing. I think sometimes we look at Noah and at first glance he is the more healthier looking of the two and he has an amazing amount of strength. But tonight as I sat and watched Jonah wrap his entire hand around my small finger, I realized that he is just as strong in his own way. Every time he would stretch and grab hold of my finger the thought would come to my mind that he has the type of strength that I don't even understand. Think of it, here he is, with a massive heart valve, still open, that should be causing complete havoc for his blood pressure and underdeveloped lungs as well as an incredible amount of pressure in his head and yet he is remaining stable and strong; that indeed takes a type of strength from this sweet child that I know I do not fully understand. It also came to my mind that Jonah will be a very compassionate leader some day. I don't fully understand what that may mean, but it came to be that he will have an ability to have great compassion with others.
I appreciate these moments of clarity because sometimes in the middle of all that is happening I unfortunately give in to despair. It is such a strength to me to realize that my boys have fighting spirits and that God would not give them more then their little bodies could truly handle, just as he does with us. I am sure the poem Footprints applies most with these little children in that during their painful, difficult moments God carries them close to him and whispers comfort and solace (I included the full poem below).
I wish we had direction for Jonah! I cannot express the frustration. Is he transferring to UCLA? If so, when? I am dreading the idea of splitting up our family but we must do what is best for Jonah. I hope we will know in the next week or two.
Well, it is late and I must get to bed, I just didn't want to end the day without something to share with all of you. Thank you for reading our blog and keeping up on our boys.
Love, Shane and Michelle
Footprints (by the way, this is Shane's favorite poem)
One night a man had a dream. He dreamed he was walking along the beach with the Lord. Across the sky flashed scenes from his life. For each scene, he noticed two sets of footprints in the sand: one belonging to him, and the other to the Lord. When the last scene of his life flashed before him, he looked back at the footprints in the sand. He noticed that many times along the path of his life there was only one set of footprints. He also noticed that it happened at the very lowest and saddest times in his life. This really bothered him and he questioned the Lord about it. "Lord, You said that once I decided to follow you, You'd walk with me all the way. But I have noticed that during the most troublesome times in my life, there is only one set of footprints. I don't understand why when I needed you most you would leave me." The Lord replied, "My son, My precious child, I love you and I would never leave you. During your times of trial and suffering, when you see only one set of footprints, it was then that I Carried You."