Friday, December 23, 2005

Let me describe a "Bilateral Orbital Advancement".
First they shave off your beautiful, bountious soft hair. Then they cut a zig zag line from ear to ear across your skull. They further the cut into your skull, and proceed to cut slits in the bone towards your forehead. They then bend the bone so it curves along the slits. Somehow-now here is the mystery-the create brow bones for you out of your own bone. The flap of skull is replaced and held together with bolts and small metal plates, some of which will dissolve, some of which are permanent. (this will forever complicate the airport security process.) The flap of skin is replaced and sewn back on. You will recieve a few units of donated blood. You will spend a night in the ICU under heavy sedation. By day three your eyes will be swollen shut and your head may swell to the size of a basketball. You will spend a week in the hospital, thankfully with heavy medication. You will then go home with less medication and start your recovery. Imagine you know this will happen to you soon. Worse yet-it's going to happen to your baby. And yes, you are happy that they feel she is healthy enough for this, her heart strong enough, and her brain "normal" enough, and you are thrilled at the potential for faster development, more development, more eye contact, but of course, you are scared. So your begin your countdown--54 days from today. You take a month off work and pray her hair grows back quickly, she doesn't suffer too much pain, and that it will be worth it.
So today you put her hair in a pony tail, and notice again how soft it is.

Tuesday, December 13, 2005

Preface: I am not pregnant.
Went to bed last night at 8:30 after staying home sick (read: tired) from work and dreampt vividly all night of big bellied women and broken apheresis machines. Woke up with a start to my alarm at 7:10 immediatly starving and still exhausted.
I am not pregnant.
Ate the following on Saturday: one bowl of Life and Great Grains cereal, mixed, 20 Dove dark chocolates, one Wendy's chicken sandwich minus tomato, one bowl cookie dough ice cream with chocolate syrup, 1.5 slightly stale donuts, one bag Reeses pieces, 10 or so peppermint sticks, 1/2 piece pizza, one homemade grilled cheese sandwhich, milk.
One day of binging does not a pregnancy make.
My sister in law calls me thrilled; the incredible Dr. Yamashiro has put her on a fertility drug. This is how they got their first daugher and holy terror Nieve. I think how I hope I can convince Zar adoption is the way to go from here on out. THANK GOD
I am not pregnant.
I remind Zar to bring my birth control up to my mom's where we are dog-sitting. He brings an empty case but no pills. Well it's abstinence for the next month then-because I assume you want to keep me
Not Pregnant.
I am dizzy, light headed, hungry, and absolutely pissed at everyone, especially my husband who can do no right lately, no matter how much he cleans. Please just let me sleep. Please make me another grilled cheese. Please feed the baby, I'm exhausted.
And even though the math and the pills and the date says it's impossible,
please, please please don't let me be pregnant.

Monday, November 28, 2005

A whole new world has opened up for Boo. It is terribly exciting. People used to ask if she could see, as she rarely made eye contact. Now she startles when I drop something. She wakes up and cries when I walk into her room singing The Booper-Doo song in the mornings. She stares into dad's eyes when he talks to her and she babbles just to hear herself. We are having so much fun exploring this new world of sounds.
Boo pulled through surgery with no trouble. We checked in at 6:00 am and were home by noon. She was hitting the tylenol pretty regularly for a few days-(you would too if your tongue had been clipped) but she hardly complained. Best of all-the peace of mind knowing she handled the surgery just fine, even it was only 30 minutes. When it comes time for the major five hour long surgery, at least we'll know she has handled the anesthesia before.
For now we'll be thankful for her new sense of sound and her new talent of giggling when her neck is tickled. Too cute.

Thursday, November 24, 2005

I am Thankful for:
My family
my job and my degree
health insurance
my subaru
big dogs
good movies and grandparents who babysit
infants tylenol
my daughters life and health
good music

Sunday, November 20, 2005

I'm big and strong. Just look at this double chin! And I love general anesthesia.I can't WAIT for my surgery tomorrow.I love the attention. God wouldn't let anything happen to me-not after bringing me this far. And afterwards I will be able to hear! And stick out my tongue. Clearly worth the risk. And as I said, I'm big and strong.
I love this picture.
It's old. Like, three months old or so. She was so tiny-teeny, skinny arms, itsy ankles and that little foot still turned funny. I can't believe they let me take her home like this. Now she's a big ole' chunk, heavy and hefty, with fat rolls around her wrists and incredibly pleasing chub-chub thighs.
I just have to remind myself how big and strong she is now, as we are at 11.5 hours and counting until she goes under general anesthesia for her tiny little surgeries-ear tubes and a fren...frenulum...a tongue tie clip. Anesthesia is terrifying--especially with heart issues, a history of apnea and being so tiny. But again, she's not tiny anymore. She's a chunk. Thank God.

Saturday, November 19, 2005

We are going to see a movie for the first time since Booferd was born tonight! Hopefully Harry Potter. I am excited, except I just bought some big letter stamps and white ink and I'd rather like staying home and making craptastic cards, but then I think of all the toys/cut up felt/target shopping bags/various junk that is littering the condo floor, and I would rather not go home at all. Plus Grandma wants to show off the baby at "The Bishops Open House."

Speaking of nothing to do with this, I love Dr. Phil. Forget he is totally my type-large, balding, older, (I'm serious) he is also caring, sensitive and funny.
If I happen to have a day off and it's nearing 3:00 I will forgo almost anything--lunch with a friend, a few and far between gym visit, my Victoria's Secret Photo Shoot (again, serious) to spend a precious hour with Dr. Phil. Oprah knows a good man when she sees one.
I got in a fight with a girl at work who claimed she was Dr. Phils' biggest fan. "Oh Excuse ME" I said. I dont' even remember who it was, just that she was after my man.
So I will end today with some sage advice from this national treasure:
When your life is on fire, don't reach for matches.
(To me this means, when you work full time, have a disabled child, a house to clean, and craptastic cards to make, don't try to fit in the South Beach Diet and exercise as well.)

Saturday, November 12, 2005

Kind of Funny Yet Disturbing Story about Dads:
Zar called me at work today to say:
"you'll never believe what Your Daughter did."
Expecting a cute anecdote about rolling from side to side or almost holding her head up, I smile and say:
"what did the Booper-doo do?"
He launches into a story about a very full diaper, weighing in at an estimated 23 lbs, soaking wet fleece jammies and the cover of the love sac needing it's second washing in it's two year history residing at our house.
At first I'm actually concerned-what would cause a baby to pee THAT MUCH?
Then I ask when he last changed her diaper.
"Not since you changed her this morning before work."
It is now 1:00 pm and I left for work at 7:00am.
To make matters worse...
I DIDN'T change her before work. In fact I haven't changed her since last night at 10:30 PM! After all, she sleeps through the night and was still sleeping when I left, and for some reason I decide to let Zar (and therefore, Boo) sleep.
So Baby Boo has been laying in her fleece jammies from the night before, wearing a 15 hour old diaper. If that isn't enough to be turned into Child Protective Services, I don't know what is. And yet I share this story with this reminder:
Mom was at work earning the insurance coverage.
was in charge of the 23 lb diaper.

Monday, November 07, 2005

It wasn't that I didn't want to go to church yesterday. I wanted to be late. I am not used to factoring in baby care time to my estimated get-ready-for-church time. Especially with a baby who needs her hair washed before church. No diaper-wipe wipedown for her.
Apparently, however, Charlotte didn't want to just be late. She wanted to lounge around in her jams all day before going to mom's birthday dinner at The Olive Garden. So when mom said
"I think I'll miss the first hour today-"
Boo said
"Let's make it one better."

So she stopped breathing, went stiff, then limp, then purple. Now mom has seen this before, but dad?

Not so much.

It's funny how much of the life-saving routine is focused on getting Zar away from the scene. He's yelling "BOO? BOO? C'MON!" and smacking her whilst I'm trying to listen for breath. Her color starts to come back right as she goes limp, and then her entire 5 oz bottle of soy milk comes flooding out of her nose and mouth, which was entirely too much for Dad, so he is sent to talk to the nice 911 dispatcher.
I give a couple of rescue breaths and maintain her airway, shocked at my calmness, thinking maybe I could do ER nursing, except I don't want to deal with pissed off people with stomach aches.
Zar is saying:
"Yes, four months. Yes, she has a history of this. No I don't think she is sweating. I'm the dad. I don't know, I think her color is coming back."
Then Boo lets out a very pissed off, blood curdling scream, and we cancel 911. She is nice and red and feeling tingly and head-achey, I'm sure, and we rub her back and clean up the spit and say "good girl, good, good girl."
I've already removed her cute pink and brown sunday dress so the paramedics won't cut it off-we've already lost a pair of cute cordouroy pants that way-and so Boo gets into her pink and pink striped jamies, has another bottle, and goes to sleep.
Her pupils are reactive. Her lungs sound clear. She's acting like herself, and we don't take her to the ER. Afterall, she's had every test in the book. We stay home from church and take a family nap, and then go to the Olive Garden as planned. Boo has had a hard day and sleeps most of it away.
The next morning, mom, who put up a very good calm, this-is-no-big-deal front, takes Boo to an emergency doctor's appointment to re-check her lungs---thank goodness, clear--and vows to never miss another dose of prevacid. Life goes on.

Tuesday, November 01, 2005

My husband and I got in a huge fight last night.
I walk in the door thinking okay, I'm exhausted, but I need to
give Booper her antibiotic
feed her
pack the diaper bag
make Zar his lunch
pick up the kitchen
wash some bottles for the night
get ready for bed
put Booper to Bed.

Zar thinks
"Where is the remote?"

So I got mad, and I started whining.
Zar got mad, and did his drama king thing, where he stomps throwing all his dirty clothes in the laundry room, refusing to talk. Then tomorrow he'll complain that I kept him up all night cleaning and he didn't get any sleep.
We exchanged words, and I holed myself in the baby's room with her medicine and her bottle, and my pillow.
An hour later I was passed out on the shaggy blue rug, and Boo was talking in her sleep.
Zar found the door locked and proceeded to get a screwdriver and start working on getting the door knob off. He actually whistled while he did this.
I lay in the dark and imagined an intruder was trying to break in on my baby and me and all I could do was wait.
He got in, turned on the light and annoucnced he was going to sleep on the couch so I could have the bed.
It was all very civil-we said goodnight, he took his pillow and a comforter into the family room. I set my alarm and fell back to sleep.
Then he was back, saying it was the four year anniversary of our first kiss-Halloween, so we had better kiss before bed.
We kissed, I invited him back to bed, and as I fell back to sleep for the third time he mentioned that he wouldn't mind making up for real, you know...
I said I'd pencil him in for tomorrow.

Saturday, October 29, 2005

There is a degree of uncertainty with everything-freak accidents happen everyday; car crashes, sudden strokes, fatal reactions to flu shots. So I don't feel so bad for myself--or so special--to be raising Charlotte.

Charlotte turns 4 months tomorrow. She is 11 lbs, 5 oz. She can see, hear pretty well, eat very well, coo, cry, rock her hips around, suck on her hands, smile, and roll from her side to her back.
She cannot pass most of the developemental milestones she "should," --pass a standard hearing test, hold her head up, breast feed, scream as loud as most, keep her oxygen saturation up without help, or go more than a week without some sort of doctor's appointment.
We don't know if she'll ever walk, talk, laugh, be potty trained, eat solid food, have natural friends, dress herself, or live very long.

But does any parent really KNOW their kid will?

Charlotte wasn't "supposed" to survive to full term. When she did that, she wasn't supposed to be born alive, take her first breath, live more than a couple hours, live without a feeding tube, survive her first week, or require medical services to "improve her quality of life". After all, she wasn't supposed to have a life at all.

So four months in, she has been admitted to the hospital twice, coming home the first time on long-term oxygen, and the second time with a IV line to her heart and antibiotics. When she doesn't cry or cough for a few hours at night, I wonder. I walk into her room
s l o w l y-

holding my breath-


But then I know most first time mom's do that. At least sometimes.
And yet I've never been happier. I tell everyone she is an easy baby; sweet, content, a great sleeper--apart from the whole health thing she is perfect.
Charlotte has partial trisomy 16, partial monsomy 9. Therefore she shouldn't be alive.
But then there are plenty of normal kids with normal chromosomes who for some reason fall behind, or never walk, whatever. So who's to tell her what she can and cannot do?
There's uncertainty. But it's awfully exciting.