Saturday, November 13, 2004

A bad day

Sometimes, in our efforts to be world-class bloggers, we get a bit ahead of ourselves.

Will didn't eat cake and ice cream to celebrate his four-week birthday. He had one of his worst days yet.

For the third consecutive day, Will stopped breathing as Maureen held him. Unlike the first two days when it passed in an instant, this time was bad. It happened so quickly. First, his lips turned a slight gray, then his face turned blue, then the next instant his whole body was the color of a deep bruise. Alarms sounded, nurses ran from different pods. Blood came from his throat, white foam shot from his nose. It was as traumatic as it sounds.

For the past month, doctors have told us to remain optimistic and promised to tell us when to start worrying. They are very worried.

Will has yet to develop his swallowing reflex. Mucus and other secretions build up in his throat, then block his airway. The reflex should develop by the 32nd week. If it doesn't develop by his due date (Dec. 5), it probably never will. The reflex is housed in the brain stem. Its absence is a sign of severe retardation.

Right now, it's just wait-and-see, hope-and-pray that he learns to swallow in the next three weeks. So far, he's done everything else on his own schedule and emerged from other scares (see: platelets, hole in the heart.) He loves his pacifier, so we're not sure why he can suck, but not swallow. He's made us proud at every turn, and -- we know we're biased -- but Will just doesn't look retarded to us. Photos don't do him justice. He looks like a model.

We're obviously freaked out. We feel terrible for Will. Like any other parents, all we wanted was his happiness and health. It just seems so wantonly cruel.

There are solutions for the inability to swallow, but they're a bit down the road. One is a tracheotomy. That would keep him from choking, but it's permanent and may confine him to a liquid diet for life.

As with everything else, there's still so much we don't know. Obviously, if there's a problem as rudimentary as swallowing, there are other fears. We didn't get a chance to ask the doctors, but you can imagine some of our questions.

This is all heady, frightening stuff. There's been a lot of tears, but today we'll pull ourselves together, head to the hospital, read him nursery rhymes and tell him we love him. The facts may vary. The future is frightening as hell for us and him, but underneath it all nothing has really changed. He's our son. We're glad he's here and we love him like crazy.


Blogger Anne said...

Will has shown incredible progress thus far. You've said it already...sometimes you have to step back to move forward. One day at a time. I love and am proud of all of you. Happy Birthday, Will.

11:37 AM  
Anonymous Anonymous said...

You ARE world-class bloggers. As always, we're thinking about you & sending Will all our love and positive vibes. Happy four weeks, little nephew.


4:23 PM  
Blogger Hedricks said...

Joel, your Aunt Jan here. Haven't seen you since 1993, but I keep up on all the news through Nita. Your blog page is the first thing I check every morning when I get up. We keep baby Will in our thoughts and prayers constantly and send love and good wishes your way.

7:34 PM  
Anonymous Anonymous said...

Happy Fourth Will! Joel and Mo, we check in everyday to see how our fave two and bit heavyweight is doing, and we are so proud to see him make his way.

9:42 PM  
Anonymous Anonymous said...

Its late just got in from work again and had to check what's new with Will and was so sorry to read about your day, how very painful for parents to see their little one have to go through this. Sending prayers & positive thoughts for a better tomorrow.
Kathy Greco

1:55 AM  

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