January 5, 2003
The sound of the phone ringing never fails to makes my pulse quicken these days. I always wonder if it will be the hospital. We are there most of the time, but we do come home to sleep and get a little bit of respite from all of the hospital time.
When the phone rang this morning we were getting ready for church. We hadn’t gone since the babies were born, but we thought it would be really good for us to go.
The phone call put a stop to those plans.
It was the neonatologist. He said we should come up to the hospital right away. I started crying immediately when Dave told me that. The doctor told us that both boys had suffered brain bleeds, Caleb’s being much more severe.
I was convinced that they were telling us Caleb was going to die. I wondered if we would get there in time. I couldn’t stop crying the entire drive to the hospital. Dave said the doctor had sounded very serious on the phone.
Dave had the foresight to call our family and friends so that they could be praying their hearts out.
When we arrived we immediately searched for the doctor we had talked to on the phone. There are 6 neonatologists on staff in our NICU. They are often quite hard to track down. It took us a while to find him. We were so anxious!
When we finally found him, the doctor very soberly began talking about the brain bleed and how drastically it had affected Caleb. I began to cry again. His words all blended together. I heard things about brain activity, cerebral palsy, low expectations, etc. Dave stopped him mid sentence. “You keep talking about how this will affect his quality of life. When we got the phone call this morning we were under the impression that his life was in jeopardy. Please clear this up for us. Could this take his life or just affect what you deem his “quality” of life?”
When the doctor spoke again his words pierced through the fog of grief that I had taken onto myself. “Oh no, this isn’t life threatening, if treated quickly and correctly. That’s not what we are trying to convey. It’s just that a bleed this severe will reduce him to little more than a vegetable.”
As his words sank in, I felt like a weight had been lifted off my shoulders. Dave and I turned and grabbed each other tightly. I felt like I could just fall right to the floor.
It was funny to see the look on the doctor’s face. I’m guessing he doesn’t often get that kind of a relieved reaction from parent’s whom he has just told that their child may be a completely non functioning person.
But all I felt at that moment was the fear leaving my body. Dread that I would have to say good bye to my son that day, like I had feared the second I heard the phone ring.
I don't think he really registered our reaction at first, because he continued talking to us in a very sympathetic, and I guess in what he thought was an understanding, way. "I know this must be very hard news to hear. I wish I didn't have to tell you how very damaged your child's brain is. He is very dependent on life support right now, and you both need to know that no one here would fault you if you want us to turn it off and just make him comfortable..."
I couldn't believe it! The implications of what he was saying were not lost on us. Basically - your kid isn't going to amount to anything according to our vast medical knowledge, and if you want to quietly let him die we would stand behind you.
Even now - as I sit here recalling this crazy day, I can not fathom this being offered to us.
He was assured that this was not an option we would be taking. I was so proud of Dave, because he made it clear, in no uncertain terms, that we never wanted that "option" to be spoken of to us again.
I felt like taking a long nap after that, but instead went over to Joshua's isolette. He is looking so good. What a balm to my weary soul! As I was standing there talking softly to him his nurse asked me if I wanted to hold him.
Hold him! I was so surprised. I didn't think that would happen for some time. Of course I wanted to.
I was scared and excited all at the same time as they unhooked his ventilator and heart monitor leads. It was a long process. Getting him situated in my lap took a while as well. They had to clip his ventilator tubing on to my purple sweater and keep it level. I felt like I couldn’t move any part of my body or I would turn alarms on.
But then I just focused on him. Oh that precious face! His eyes are still fused shut. They won’t open for another 2 weeks or so. Still, he is such a completely formed beautiful child!
It kind of felt like I was just holding a blanket. He’s only about 1 lb. 6 oz right now. He had the normal initial weight loss those first couple of days, but is holding his own quite nicely now that he is getting my breast milk.
Feather light. I took his little hat off for a few seconds and stroked his light brown hair. He has quite a bit of it. I quickly put his hat back on when one of his nurses gave me that disapproving and stern look... I know I have to be so careful. He can’t keep his own body temperature up and the hat is important.
I was so nervous at first that I didn't allow myself to enjoy the moment. I didn't want to do any thing to cause him to have breathing or heart problems, so I sat there - really tense and cautious. I don't know what I expected. I guess maybe to feel like a mom. I didn't.
And then he squirmed a little bit and it looked like he was trying to open his eyes. I felt some small stirrings in my heart. Like - maybe this is going to be okay. Maybe I can do this. Maybe, just maybe, I can just enjoy holding my son. So, I just sat their and breathed him in. He smells like beauty. Sweet, sweet baby smell. Even past all of the smells of the hospital and medicines, I could breathe in the wonderful scent that is newness just sent form God himself.
And for a moment I was a mother. Not a nervous onlooker watching the nurses rush around. Not a frightened woman who can barely look into the future for fear of what might be there.
It was just me and him. In a rocking chair.
Oh my baby! How I have longed for this tender moment with you. You made my heart overflow with joy. A joy I haven’t known for weeks.
How good to see him start to thrive.
So, another day done. Another prayer of thanks. Another night of restless sleep.