Parker update March 6

Parker had a quiet day today.

We are slowly resuming some level of parental responsibilities for our four girls and we decided that for the morning Renee would take the girls to our pediatrician to check on ear infections and I would come to the hospital to be with PJ.

It was slightly disorienting and disconcerting walking into the unfamiliar building, trying to find the correct elevator bank and then walking casually into Parker's room without having anyone notice I was there until the nurse staff came in to check vitals 20 minutes later. In the ICU, the staff would have to personally let us in and we would follow a protocol of washing hands and putting on the blue gown before we could go into the room. While sometimes we waited impatiently outside the door for someone to answer, there was a comforting sense of security.

We are allowed to hold our little guy as much as we want now. He is a bit like an 18 pound newborn in that we have to support his neck and he doesn't move his arms or legs to make himself more comfortable-- we have to figure out which members to adjust by his little whimpers. He is also still hooked up to a lot of monitoring equipment and his feeding tube so when we do get him settled and comfortable we have to re-adjust all of the little nodes attached to his body so that the monitors stop ringing.

He has a little fever again today and they think it may be due to his sedative withdrawals. They have leveled out his morphine but will be taking him off valium. He still has antibiotics and three different kinds of anti-convulsive medications.

Dr. Halfen has been assigned to Parker and she indicated today that we would likely have an MRI next week to get an overview of neurological functioning or areas where they may be able to act. She also said one of the major risks was that his auditory nerve was damaged but they would be looking at that next week as well. We spoke with Dr. Heilbrunner (Claire) who said the shunt surgery is a "maybe" at this stage and they will wait to see as he progresses.

The respiratory therapist came by today. After working on him for 5 minutes he said that he really doesn't have any respiratory problems right now and that he was uselessly bothering him.

The physical therapist came by in the afternoon and worked with him for a while. She said the most critical thing he needs to re-learn is holding his head up. As there are no physical therapists working this weekend, we are going to be working his neck on our own for the next couple of days.

We are trying to understand what the next treatments are in order to get some kind of projected going home date but the best we can determine is that it won't be for at least another week.

We were ill-prepared for our move to the waiting place and felt a little embarrassed when the nurse asked us last night if we had pajamas we could put him in. After 11 days of alternating between his only clothing options being diaper on or diaper off we hadn't really thought about clothes. This morning he looked a little dejected wearing a faded surgical robe but Renee has now made sure he has four changes of clothes waiting here.

Outside of Mehdi-bunny he doesn't have much in the ways of toys here either. This morning I brought a book from home which I read to him but while he followed and looked at the pictures, he was not interested in grabbing the pages. While on my lap he became interested in Mehdi-bunny's ears and kind of tugged a bit for a while on them. I tried to get him interested in the tube of diaper cream by the bed but he couldn't be bothered. I was pleased when he took interest in my empty can of Dr Pepper. With his right hand he could actually hold it by himself and would feel it with his left hand. He was making the motion to bring it to his mouth (just so we are clear he did not drink Dr Pepper from a can previous to meningitis) but after a couple of times of him knocking it up against his forehead I decided we would end random toy time.

They are working on him getting past the feeding tube stage and they had me try to give him a bottle. First they started with 20cc's of water to test him. I was impatient for him to finish this so he could get on to formula-- but it took him some time. At one point, when the nurse left the room, I considered dumping the rest of the water out or finishing it off myself on the basis that it was just a practice and that he was ready to move on to the real thing. When we did get to the formula, he started out briskly but would slow down a bit and once in a while push it back out. I rationalized to the nurse that it was not his fault and was because the nipple shape was unfamiliar to him and that I would make sure my wife brought the correct bottle. After I had coaxed him through 80ccs, the last 20ccs were a bit hard to get down him and took him almost as long as the first 80. I would work the nipple different ways in his mouth to express a bit of liquid and sometimes he would cough a bit (sounds like a cat coughing up a furball) and I would let him rest for a minute and then diligently go back at it. The nurse noted his diminishing level of interest and said that Parker had made excellent progress and that they didn't anticipate that he would finish the whole bottle. I was determined that my son would finish. After a few more minutes I finally heard that small squeaking sound of sucking air and proudly placed the bottle on the counter for the nurse to see. Then, the overly stuffed boy regurgitated 15ccs back onto both of us.

Other than reminding me of Parker's other nickname as a newborn, it also reinforced how imperfect a father I still am. I think that it is pretty easy to love your kids-- with Parker I particularly remember that feeling of unconditional love. Prior to the twins birth 8-months ago, I remember thinking that I would be most happy if they were both girls. I was pretty comfortable with being the knight in shining armor to my other three girls and I liked the idea of not having to worry about buying new clothes. I was surprised when a little boy came out first, but even more surprised at how happy and emotionally fulfilled I felt that we had a little boy. Loving them is rarely a problem, parenting, letting them grow and experience difficulties while guiding them through, is a bit harder for me. Like the first little test with water, God gives us trials so that we can weather harder storms ahead. Without those tests we are unsure and unready to react in a certain situation-- the inate desire to remove all obstacles from my child can only weaken him longer term.

God also expects us to face our trials in less than ideal circumstances and rationalizing their lack of ability to withstand based on elements which are outside our control doesn't help them or us to grow; being able to adapt and thrive in spite of sub-optimal conditions makes their triumphs a little more triumphant.

Unlike Parker's over-exigent earthly father, God also doesn't require more than we can accomplish and has no ego in trying to make us go a little bit farther just to see if we can. He knows our limits and boundaries and He will push these as far as we can go-- but not further.