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Saturday, November 27, 2004

Weekend worriers



As eureka moments go, it was more pathetic than profound.

Weekends used to be our friends. That seems like a long time ago. Is this what adulthood is all about?

Last year, Mo and I had an ongoing rift that was the source of three years of arguments. She liked to party on Friday nights. I was the Saturday Night Kid. It was a big deal: Her Blockbuster Night was my Party Like a Rock Star Night. How could our relationship ever grow if our leisure time was so incompatible?

Somehow, we got married anyway. Now, our weekends are spent worrying about whether a doctor will take us aside yet again to discuss when we should consider a do-not-recussitate order for Will (the consensus: it's way too soon.)

Two weeks ago, we got that chat from a doctor after she returned Will to the ventilator. Last Saturday, we learned that Will probably has Cornelia de Lange Syndrome. Suddenly, going out on Saturdays instead of Fridays doesn't seem quite so terrible.

We now live in fear of weekends. We duck behind chairs when doctors approach. We stare at Will's levels for eight hours straight, warning ourselves not to get preoccupied but convincing ourselves everything would turn out fine if his CO2 count would just fall below 70. We vow to leave when he's doing well, but can't tear ourselves from him if he is.

So far, this weekend has been free of drama (knock on wood). The little guy controls our moods, however. When he opens his eyes and wiggles around -- like yesterday and Thursday -- our hearts swell with love and pride. We're confident that anything is possible, long odds are there to be broken and cherish all Will has to teach us about perservance, grit and the wonder of life.
When he sleeps all day and appears to have labored breathing -- like today -- we still love him like mad, but it's easier to feel sorry for ourselves.

I guess that's it. We're parents now. When Will does well, we feel great. When he doesn't, we're in the dumps.

All in all, Will is doing OK. He's in the midst of a remarkable growth spurt. Will is now tipping the scales at 3 pounds, 8 ounces or 1594 grams. He's gained 200 grams in one week. He gained 300 grams total in the five previous weeks. We're now calling him Li'l Fatso.

Still, he's remained on the ventilator now for two weeks, the longest he's been on life support since he was born. Will was scheduled to try the C-PAP (nose breathing tubes) for the fourth time last week, but he's rebounded slower on the ventilator than he has in the past. He's making slow gains, however, so they may try the C-PAP again next week.

That's it for now. It's Saturday night and time to party. How do I know? Mo's wearing her special sweatpants and has a vise grip on the remote control.

Sunday post script = Form held true this weekend. Will took yet another step back on Sunday. His breathing, which was labored Saturday, grew worse and they hiked up his ventilator settings and gave him another blood transfusion. He may have pneumonia. That would explain why he's gasping for air in short breaths that are similar to those when you cry. It' s a setback and probably delays efforts to try him on the C-PAP nose breathing tubes, which already have been pushed back another week. Will isn't doing as well as he usually does on the ventilator. We're worried, but tired of crying. Will's always made us love Mondays, so we're hoping he gives us another reason to tomorrow.

6 Comments:

Anonymous Anonymous said...

Your little one is so cute!!! What a great combination of his Mom and Dad! Work blocks me from getting to the site, so this was the first time I've been there! It's wonderful!! Congratulations on your little bundle! Welcome to the family Will!!!
XO
Sharon

12:48 PM  
Anonymous Anonymous said...

Hi Mo and Joel-

Just wanted to let you know I was thinking of you:) Love and prayers to you and Will, your adorable 3 pound 8 oz "chunker" (remember "Goonies"?! Actually, I think his name was just "Chunk"...) Anyway, take care, and I'll talk to you soon!

love,

Jen Hen:)

P.S.--I'm not very poetically savvy, so I'm not able to offer up a poem for the little man, but I do have a song request...Sunshine, can you make sure you teach Will the infamous song and dance, "Makin' a Purple Stew"?

Thanks, your maiden friend,

Silver Bird:)

5:25 PM  
Anonymous Anonymous said...

Hi Joel and Mo,
We wanted to tell you that we've been thinking about you guys. Nothing else is more important than Will knowing that you are there with him. Keep being strong for him.
Love,
The Luna's

12:54 PM  
Blogger Hedricks said...

Keep hangin in there, guys! He is a darling red head (and we all love red heads); know everything will turn out great. I'm sure the roller coaster of emotions is draining but you're amazing, writing great stuff on the blog and being there for Will.

9:44 PM  
Blogger Hedricks said...

Keep hangin in there, guys! He is a darling red head (and we all love red heads); know everything will turn out great. I'm sure the roller coaster of emotions is draining but you're amazing, writing great stuff on the blog and being there for Will.

9:44 PM  
Blogger Hedricks said...

Keep hangin in there, guys! He is a darling red head (and we all love red heads); know everything will turn out great. I'm sure the roller coaster of emotions is draining but you're amazing, writing great stuff on the blog and being there for Will.

9:44 PM  

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