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…