Sunday, August 29, 2010

Going From Zone to Man

I’m pleasantly surprised that the transition of our parental defensive scheme from two-on-one to two-on-two hasn’t been as scary as I originally anticipated. Don’t get me wrong, the level of difficulty definitely increased significantly. Fortunately, though, THE WIFE and I aren’t coming apart at the seams all the time … just occasionally.

With one kid, mom and dad are both guaranteed some down time to recharge during every nap (which is fairly often with a newborn) or in Greta’s case now about two- to three-hours in the afternoon. Those moments are ideal for house tidying, telephone calls without preoccupation or distraction, possibly a jog, or even a mini-house project.

Then at night with one, mom and dad get (at least if you’ve got a good sleeper like Gigi has been) consecutive hours first for some adult time and then sleep. Greta nowadays goes uninterrupted for about 11 hours, which has generally been the case since she was a few months old. Usually, THE WIFE and I would eat dinner, chat, and watch TV or use the computer during that time.

Nowadays, the only windows we have when both of the kids are down concurrently is maybe an hour in the afternoon and two stretches of three hours at night. It’s barely enough time to do anything.

When I get home from work and walk in the door, still numb from the commute home, all I want to do is decompress from the day. (Translation: not talk.) Usually, I'm assigned duty on Greta whose running rampant through the house. Then, THE WIFE fires questions at me without fail like an overcaffeinated machine gunner: “Who’d you talk to today?” No one. “Where did you go?” To work. “Did you find out what time that party starts that doesn’t take place until two months from now?” I sigh. She moves on to the next question and so on. But who can blame her? She’s been home all day singing along with DJ Lance Rock, eating Greta’s rejects from the high chair, returning from a doctor’s office possibly, and lucky if she actually showered.

But, like most parents, we manage. This is what we signed up for. We re-group in that moment when Greta is down for the night, Gus is snoozing on one of our chests, the house is quiet again, and we smile at each other. Maybe it’s only twenty minutes or so of calm for just the two of us defensive coordinators, but it’s a coaches’ meeting worth having. And then we press the reset button and start all over again.

As for the two little Ts…

Gus is snoozing next to me as I type. He makes more noise sleeping than any person I’ve ever encountered. And we love it. He snorts and grunts like a truck driver eating a whopper from the drive thru. Strangely, it soothes me and THE WIFE when we hear his chainsaw firing from the bassinette at night. When he’s actually quiet during sleep, it freaks us out.

As for his health, G-man is doing really, really well. He’s off the oxygen, eating a ton, and gaining weight. Giving him a bottle is so nice because he just looks at you with these beautifully innocent blue eyes. I don’t know if he can actually see me yet but I hope so.

Gus also does this thing where he puckers his lips and widens his eyes when we pause during a bottle. Suddenly, he’ll paw my t-shirt collar. I’m convinced he’s telling me to hurry up and get back to his bottle. He just melts me with that irresistible mug.

We watched “Hard Knocks” together last night and I tried to give him a little background of what it means to be a Jet fan. I think he’s keeping his options open.

Meanwhile, Miss Gigi is my other heart melter. I am stunned at how quickly her intelligence and personality are developing. I know I’m biased but she is the cutest little girl I’ve ever known. She mimics everything we say with a “sh” lisp instead of a “th” sound on esses. For example, August is “Augeesh.” “Ice” is “eyesh.” “Sue Sue” is “shoe shoe.”

When G runs through the house, she’s often on her tip toes holding her arms out to balance as her curly hair salad bounces around. I may be hiding out in a different room, trying feverishly to fix something (almost always unsuccessfully) on the DL. But within moments, I inevitably hear the patter of her bare feet coming and then she’s calling for me. She is my little shadow. And I love that.

Recently, my name has transitioned from Gaga to Dah-dee. She enjoys eating raw mushrooms, red onion, pickles, and olives. And the nicest most recent change is the occasional hug from G that comes unsolicited, complete with a gentle pat on my back from her little hand. It’s priceless. She’s learning how to manipulate me already!

Monday, August 23, 2010

Quick Update

A more thorough post will be forthcoming soon. Gus is totally off oxygen, which is of course great news. More about him and Gigi to come.

Just wanted to share a link to an on-line magazine based in the Boston area that will be featuring my posts over the next three weeks about Gus' birth. It's a pretty cool magazine so take a look here: The posts will be under the "Dads" section. "August in July" went on-line this morning - the headline refers to the G-man as "Augustus." He's getting new nick names already!

Take a look at the other articles, too - the magazine has some really talented writers. Enjoy.

Tuesday, August 10, 2010

Two for One

Part A - One Week Later, The Dust Settles

After meetings with who knows how many doctors, countless numbers of tubes, wires, and probes pinching, poking, and annoying Gus, we finally got the green light to take our baby home around 9 p.m. last Tuesday night. I may have jogged slightly while lugging the G-man towards our car. Hospitals are terrible places to visit and wonderful places to leave. We were finally getting the eff out of dodge.

Fast forward to today: we’re basically in typical “parent of a newborn” mode - feed baby, burp baby, change baby’s diaper, swaddle baby tight for snoozing, hold/squish/hug/kiss/love baby whenever, then repeat. Oh and one more thing: sleep deprivation. One minute, I feel fine. The next minute, I’m nodding off thinking “Did I just finish a Thanksgiving turkey dinner and an entire bottle of Mark West pinot noir (one of the wife’s faves), or am I just really sleepy?” Then I realize it’s 11 a.m. And it’s still summertime. And I’m watching my fifth episode of Yo Gabba Gabba in a row with Greta.

Seriously though, the only real difference compared to our initial few days home with Greta when she was a newborn is that we have to hook oxygen up to Gus’ nose when he sleeps. His face crinkles and his tiny fingers swipe at my hand when I slip the cannulla into his nose (I imagine it tickles his nostrils a bit) but we’re following the doctor’s orders. Otherwise, everything is status quo. At last count the G-man was packing on some pounds – well, a few ounces at least. And he’s looking great.

Meanwhile, the wife and I have been watching Greta closely to determine if there’s any change in her behavior that may be attributed to Gus’ sudden arrival in her territory. As an older sibling myself, I understand that she merely expressed curiosity and affection for her little brother when she attempted to gouge out one of his eyes and hucked a ball in his face. That doesn’t concern me. The only unusual change in conduct I noticed is that G is suddenly very interested in showing you her “boo-boos.” She points at the supposed injury, furrows her brow in a grave face towards you, and says boo-boo repeatedly until you nod in sympathy and/or kiss the subject area. Honestly, I think she’s fishing for band-aids because Gus has circular ones on each of his cheeks to attach the oxygen tubes. All things considered, we Ts are doing great.

Thanks one more time to all of the family and friends who have reached out in their own way from messages to cards to car rides to watching Gigi to working at our house to gifts and more. We appreciate it very much and thank you all again!

Part B - Try Some O’ Me

By no means do I intend for this blog to become some type of soap box solely for Downs syndrome (“DS”) awareness, but a few of the same questions have popped up from loved ones about DS so I wanted to answer them at least based on the information we’ve been digesting. Again, I reiterate that a medical professional will probably cringe at my hearsay explanation but I think I’ve got a handle on it. So here goes:

1.) What is DS, how does it happen, and why?

DS is a chromosomal disorder. Of the 23 pairs of chromosomes that each of us has, people with DS have an extra one usually at the 21st chromosomal pair. Thus, DS is more commonly known amongst the medical pros as “trisomy-21.” (All of the doctors and nurses in the hospital used this term, which kind of confused us at first but by the 100th time we figured it out.)

Generally, the chromosomal abnormality occurs at the time of conception. Either the egg or the sperm carries the extra chromosome so from the time of fertilization until the fetus develops, the extra chromosome becomes replicated in every cell formed during the subsequent instances of cell division – or meiosis for you high school bio nerds.

I haven’t found any research that affirmatively proves exactly why this happens. However, the evidence states it has nothing to do with anything that mom or dad did during the pregnancy. In other words, neither Shell nor I did anything wrong when we smoked crack and took bong hits during that first trimester.

The likelihood of a baby with DS during any live birth is pretty uncommon: about 1 in 800. However, as you consider the age of the mother, the risk becomes much more significant. For example, 35 year olds have something like a 1 in 380 chance of having a child with DS. 45 year olds have a 1 in 20 chance of having a child with DS.

2.) How will DS affect Gus?

Every kid with DS has a different combination of symptoms and/or complications that distinguish his/her health from that of a typical child. Generally, kids with DS have a higher risk of genetic heart defects (though surprisingly, not the kind that Gus has), gastrointestinal complications, thyroid instability, hearing problems, vision problems, musculoskeletal problems, mental deficiencies, speech difficulties, shorter life expectancy, obesity, and the list goes on.

So far, we know of Gus’ coarctation and hypothyroidism. He has low muscle tone to the extent that his head and neck are even more floppy than a typical infant. We won’t know about his vision until he’s older.

But most importantly, G-man is a warrior. He survived pregnancy. He survived the delivery. He survived the hospital. He has made it home. He also passed his newborn hearing test (which was so weirdly important to me because I love music so much and I need to teach him all about the bands I love), though I was reminded that this can change at any point in Gus’ development. We are choosing to dwell on the positive instead.

3.) How “high” or “low” functioning will Gus be?

This is a valid question and one that Shell and I had immediately, though I must admit I hate the sound of it because it almost suggests we’re doubting Gus before he even has a chance to show us what he’s got. In any event, we have no idea. There is no way to tell at this time. A wide spectrum exists for the potential cognitive and motor function of any kid with DS. The lesson we keep hearing from doctors and parents alike: early intervention. Basically, we need to team up with speech therapists, occupational therapists, and many other professionals as soon as possible to get our future Special Olympian bocce competitor and/or disc golfer (bocce is a Special Olympics event but I’m working on the disc golf) in training for growing up.

4.) Do we face any higher risk of having another child with DS if we have any more kids?

I understand that there are three varieties of DS. The most common type (about 95%) is as I described above when the chromosomal abnormality occurs at conception. The other two are called mosaicism (not applicable to Gus apparently) and translocation. Translocation occurs when one or both of the parents carry a particular gene that results in a higher rate of conceiving children with DS.

According to the genetics testing that occurred when we were at Children’s Hospital, neither Shell nor I are gene carriers. Therefore, the risk of having another baby with DS is only about 1% higher than another couple with expecting mothers of the same age. The wife and I are nowhere near any decision on that front yet but we know that's a question that's been kind of floating out there.

So that’s just the tip of the iceberg. We have a lot to read and learn. If you want to ask and/or educate Shell and I about anything, fire away. Maybe it’ll be a question we haven’t even thought of that we can pitch to G-man’s doctors…