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!
Sunday, August 29, 2010
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: http://www.goodmenproject.org/. 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.
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: http://www.goodmenproject.org/. 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…
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…
Saturday, July 31, 2010
Wow
In an age when parents stage the escape of a hot air balloon occupied by their boy in the hopes of securing a reality show, I was slightly paranoid of whispers that we may have overstated the Gus-man’s health status – but in my real world anyone who knows me realizes that I much rather prefer to blog about fart innuendo as opposed to one of my children confronting a potentially life threatening medical situation.
The past week has been an emotional roller coaster ride with a track in the shape of a Jackson Pollock painting. On Wednesday night, Shell and I went home with the understanding from Gus’ cardiologists that surgery on his aorta was happening on either Thursday or Friday barring the less than one percent chance that he improved. Considering that children born with Down Syndrome (see sidebar) occur in about 1 out of every 800 live births in the U.S., we should have been cognizant not to rule out small percentages. We also neglected to realize that every relative, friend, acquaintance, and friend of friend who heard about our situation were sending their prayers, positive thoughts, and good vibes towards the hospital room that held our little fighter at Boston Children’s Hospital.
By Thursday, the newest echocardiogram forced the Ivy League educated team of doctors to pause. Gus’ pulmonary pressure was suddenly improving. They decided to wait 24 hours before green lighting surgery. Still, they reminded us, be prepared that they may have to take immediate action if necessary. By that time, our support network had been dialing in favors to saints and others were asking deceased loved ones to pull some strings. The tide was turning.
On Friday night, our cardiologist came back to us smiling and scratching his head. Gus’ latest echo indicated that not only that surgery was no longer an option but they were going to taper his oxygen immediately and discharge the G-man out of intensive care.
On Saturday morning, I got to hold my son for the first time in I don’t know how many days while Greta wreaked havoc on a breast pump and anything else she could get her hands on in Gus’ room. Last I knew, Gus had been off of oxygen for several hours, he was eating, peeing, and pooping - just like many of the babies born on July 23, 2010. We’re hoping to get August Thomas home some time early next week.
I cannot adequately express the gratitude that Shell and I have for every single message or gesture of hope, encouragement, kindness, love, and support that we received these last few tumultuous days. My faith in humanity is restored a hundred times over. While some may have preferred not to publicize these quite personal events, this small blogging project became a therapeutic outlet for me. I had a lot bottled up inside and I needed to get it out. Thank you for reading along and being there with us. At this point, I’m looking forward to making light of the little things in my family’s lives again.
I’m spent. I haven’t felt this range of emotions in a single week in my entire life. I hope never to experience anything like it again. The only emotion I hope to experience now is the sheer joy when I’m pulling into my driveway and lugging my baby boy’s car seat into our home. When that happens, I’ll be happy to tell you all about it followed shortly by the ensuing chaos of raising two beautiful children 17 months apart.
The past week has been an emotional roller coaster ride with a track in the shape of a Jackson Pollock painting. On Wednesday night, Shell and I went home with the understanding from Gus’ cardiologists that surgery on his aorta was happening on either Thursday or Friday barring the less than one percent chance that he improved. Considering that children born with Down Syndrome (see sidebar) occur in about 1 out of every 800 live births in the U.S., we should have been cognizant not to rule out small percentages. We also neglected to realize that every relative, friend, acquaintance, and friend of friend who heard about our situation were sending their prayers, positive thoughts, and good vibes towards the hospital room that held our little fighter at Boston Children’s Hospital.
By Thursday, the newest echocardiogram forced the Ivy League educated team of doctors to pause. Gus’ pulmonary pressure was suddenly improving. They decided to wait 24 hours before green lighting surgery. Still, they reminded us, be prepared that they may have to take immediate action if necessary. By that time, our support network had been dialing in favors to saints and others were asking deceased loved ones to pull some strings. The tide was turning.
On Friday night, our cardiologist came back to us smiling and scratching his head. Gus’ latest echo indicated that not only that surgery was no longer an option but they were going to taper his oxygen immediately and discharge the G-man out of intensive care.
On Saturday morning, I got to hold my son for the first time in I don’t know how many days while Greta wreaked havoc on a breast pump and anything else she could get her hands on in Gus’ room. Last I knew, Gus had been off of oxygen for several hours, he was eating, peeing, and pooping - just like many of the babies born on July 23, 2010. We’re hoping to get August Thomas home some time early next week.
I cannot adequately express the gratitude that Shell and I have for every single message or gesture of hope, encouragement, kindness, love, and support that we received these last few tumultuous days. My faith in humanity is restored a hundred times over. While some may have preferred not to publicize these quite personal events, this small blogging project became a therapeutic outlet for me. I had a lot bottled up inside and I needed to get it out. Thank you for reading along and being there with us. At this point, I’m looking forward to making light of the little things in my family’s lives again.
I’m spent. I haven’t felt this range of emotions in a single week in my entire life. I hope never to experience anything like it again. The only emotion I hope to experience now is the sheer joy when I’m pulling into my driveway and lugging my baby boy’s car seat into our home. When that happens, I’ll be happy to tell you all about it followed shortly by the ensuing chaos of raising two beautiful children 17 months apart.
Wednesday, July 28, 2010
Rolling With The Punches
First let me say thank you to all of our family and friends for their comforting words, offers of support, kind gestures, good vibes, and prayers. We are blown away by the vast array of people who have taken the time to reach out: total strangers; old friends from grammar school to law school; friends from former jobs; and honestly many folks with whom we haven’t spoken or seen in several years. Wow. Many of you have made Shell and I smile, laugh, and/or cry with happiness. Thank you, every single one of you.
Speaking of the wife, she’s reminded me to call our son August – not just Gus – every once in a while, too. Done. Moving on.
Since Monday afternoon, we’ve been in a whirlwind. Up to 4 pm that day, we were under the impression that Gus’ heart was basically okay. But his second echocardiogram showed a change from his original one over the weekend. Around 7 pm, an ambulance took Gus in a tiny box on a stretcher from the neonatal ICU at Beth Israel to the neonatal ICU at Children’s Hospital across the street. On Tuesday, he moved up one floor to the cardiac ICU. He is stable and resting comfortably there as of Wednesday night.
At the risk of butchering the proper medical terms and a technically accurate summary of his status, here’s my understanding. A duct in G-man’s heart was supposed to close when he took his first breath but it stayed open. A portion of his aorta (probably defective already) began narrowing as the duct stayed open. Meanwhile, pressure increased in his lungs, which caused Gus to breathe more often and rapidly, which further worsened the pressure. The doctors are now medicating Gus and intentionally keeping the duct open to prevent increased pressure in his lungs. He’s on an IV for food/hydration. He’s got tubes, wires, lights, and buttons connecting different body parts to machines making all sorts of noises. He will almost certainly go to surgery to correct the narrowing in his aorta and relieve the lung pressure either tomorrow or Friday. Unbelievably, no one with whom we’ve spoken knows when exactly his operation will take place – but that is literally my only complaint with the hospital. (Well except the traffic situation leaving the parking lot – can someone please sort that out?)
To back up, Shell checked out of BI on Tuesday morning. We spent all day at Children’s NICU bonding with Gus and meeting with various medical peeps. The news kept getting worse. Hi, I’m an endocrinologist. Gus has hypothyroidism. We need to give him a pill every day now for the rest of his life. Much more seriously, the cardiologist was concerned that Gus’ lung pressure was worsening. They wanted consent to transfer him to the cardiac unit and put him on a ventilator. The punches just didn’t stop that day.
We went home that evening, which was difficult to say the least. (Shell has made about 90% of Gus’ caretakers cry. It’s her test to make sure they care, I think.) But we needed to get home to change clothes, shower, sleep in our beds, but most of all, to see our little Greta. She needed us and we needed her. She brightened our moods immediately. I think G’s bath went a little long that night. And we had an impromptu dance party before bed. It was therapeutic for all.
So today, we spent the day at Children’s cardiac ICU. The staff there (and everywhere else for that matter) have been absolutely wonderful. Most importantly, Gus looked great. He just seemed better. Your and our prayers are being answered, I swear.
Though we could not feed him, August’s mom got to hold him. I kissed him whenever I could. It was finally a good day.
Before I sign off, I’d like to share something special that happened today. We asked to meet with a chaplain when we arrived. Before Gus was born, the wife and I agreed that we would do something for both of our kids at the same time, which would be analogous to a baptism or christening – but done by us at our home in our own way in the company of family and friends. We hadn’t hashed out the details yet but the seeds were germinating. However, in light of the unpredictability of Gus’ impending heart surgery, we wanted to improvise a little somethingsomething to recognize both the little man’s arrival and the immediate challenge he faced.
Not long after we arrived, a woman stopped by and introduced herself as one of the staff chaplains. We explained our spiritual beliefs as well as we could in the ten minutes we were together. We explained Gus’ situation and the work-in-progress we had originally planned to do at home. She left to go to her office and returned within 30 minutes. She came back with a proposed outline. We added a few tweaks.
And just like that, we experienced a beautifully simple meditation of sorts together. We forgot about everything except how much we love our son in those moments. It was perfect.
We’ll continue to keep you updated the best we can. Thanks again to all pulling for Gus out there. Keep up the good work.
Speaking of the wife, she’s reminded me to call our son August – not just Gus – every once in a while, too. Done. Moving on.
Since Monday afternoon, we’ve been in a whirlwind. Up to 4 pm that day, we were under the impression that Gus’ heart was basically okay. But his second echocardiogram showed a change from his original one over the weekend. Around 7 pm, an ambulance took Gus in a tiny box on a stretcher from the neonatal ICU at Beth Israel to the neonatal ICU at Children’s Hospital across the street. On Tuesday, he moved up one floor to the cardiac ICU. He is stable and resting comfortably there as of Wednesday night.
At the risk of butchering the proper medical terms and a technically accurate summary of his status, here’s my understanding. A duct in G-man’s heart was supposed to close when he took his first breath but it stayed open. A portion of his aorta (probably defective already) began narrowing as the duct stayed open. Meanwhile, pressure increased in his lungs, which caused Gus to breathe more often and rapidly, which further worsened the pressure. The doctors are now medicating Gus and intentionally keeping the duct open to prevent increased pressure in his lungs. He’s on an IV for food/hydration. He’s got tubes, wires, lights, and buttons connecting different body parts to machines making all sorts of noises. He will almost certainly go to surgery to correct the narrowing in his aorta and relieve the lung pressure either tomorrow or Friday. Unbelievably, no one with whom we’ve spoken knows when exactly his operation will take place – but that is literally my only complaint with the hospital. (Well except the traffic situation leaving the parking lot – can someone please sort that out?)
To back up, Shell checked out of BI on Tuesday morning. We spent all day at Children’s NICU bonding with Gus and meeting with various medical peeps. The news kept getting worse. Hi, I’m an endocrinologist. Gus has hypothyroidism. We need to give him a pill every day now for the rest of his life. Much more seriously, the cardiologist was concerned that Gus’ lung pressure was worsening. They wanted consent to transfer him to the cardiac unit and put him on a ventilator. The punches just didn’t stop that day.
We went home that evening, which was difficult to say the least. (Shell has made about 90% of Gus’ caretakers cry. It’s her test to make sure they care, I think.) But we needed to get home to change clothes, shower, sleep in our beds, but most of all, to see our little Greta. She needed us and we needed her. She brightened our moods immediately. I think G’s bath went a little long that night. And we had an impromptu dance party before bed. It was therapeutic for all.
So today, we spent the day at Children’s cardiac ICU. The staff there (and everywhere else for that matter) have been absolutely wonderful. Most importantly, Gus looked great. He just seemed better. Your and our prayers are being answered, I swear.
Though we could not feed him, August’s mom got to hold him. I kissed him whenever I could. It was finally a good day.
Before I sign off, I’d like to share something special that happened today. We asked to meet with a chaplain when we arrived. Before Gus was born, the wife and I agreed that we would do something for both of our kids at the same time, which would be analogous to a baptism or christening – but done by us at our home in our own way in the company of family and friends. We hadn’t hashed out the details yet but the seeds were germinating. However, in light of the unpredictability of Gus’ impending heart surgery, we wanted to improvise a little somethingsomething to recognize both the little man’s arrival and the immediate challenge he faced.
Not long after we arrived, a woman stopped by and introduced herself as one of the staff chaplains. We explained our spiritual beliefs as well as we could in the ten minutes we were together. We explained Gus’ situation and the work-in-progress we had originally planned to do at home. She left to go to her office and returned within 30 minutes. She came back with a proposed outline. We added a few tweaks.
And just like that, we experienced a beautifully simple meditation of sorts together. We forgot about everything except how much we love our son in those moments. It was perfect.
We’ll continue to keep you updated the best we can. Thanks again to all pulling for Gus out there. Keep up the good work.
Monday, July 26, 2010
The Curveball
By eleven or so, we were in our hospital room waiting to be reunited with Gus. He was in the nursery undergoing what I assumed to be regular tests. After a little while, I went to check on our little guy. The pediatrician told me that Gus’ body temperature wasn’t quite stable enough yet for him to come down but it shouldn’t be too much longer. I updated Shell and we continued calling and texting our good news to loved ones.
Around one, I was in the middle of writing the last blog when the pediatrician came into our room. I knew immediately that something was wrong by the look in her face. She closed the door. Then she hit us with a sledgehammer. Gus had several characteristics of a baby with Down’s syndrome. They would not know for sure until completion of a certain blood test but they were pretty sure.
I wanted to vomit but I comforted my wife instead. She was angry, hurt, and scared because the doctor was telling us that our beautiful son whom she carried in her belly for nine months and held in her arms for the first time only hours ago was not the baby we thought we were having. Shell engaged the pediatrician challenging her to defend her position. I sat by numbly holding Shell’s hand. Moments passed by in a blur as they spoke. Finally, Shell and I were left alone with our son to think and talk.
When I saw Gus shortly after he was born, I noticed that he had a lot of skin going all the way around his neck – almost like a huge double chin turtleneck. I presumed there was simply a lot of fetal fluid or something. He was only minutes old and still transitioning from the womb to the world. I didn’t say anything so as not to alarm Shell unnecessarily. The doctors didn’t say anything so I had no reason to worry.
When I saw Gus in the nursery for the first time, his neck was still unusual to me. Even though the temperature thing seemed reasonable, I thought they were spending a lot of time with Gus. Then I remembered that I was sleeping before they brought Greta to us for the first time so I tried not to overreact. No need to panic.
When the pediatrician came in to see us, I said inside my head “Don’t say Down’s - don’t say Down’s” over and over until she actually said it. Holy shit, I knew it.
Only two minutes after the pediatrician left us alone, Shell and I were sitting together still dumbfounded when all of a sudden we realize that Gus is turning blue. I ran for a nurse, they grabbed him and started running down the hall, I looked at Shell to see what she wanted me to do. “Go with them!” she yelled bawling. I ran behind the nurses to the nursery. I feared that our son was about to die in front of my eyes. This isn’t possibly happening right now. I want to wake up and start this day over again. Please save my son.
Finally, they gesture to me that he is okay and breathing. I return to Shell and we hold each other.
-------------------------------------------------------------------
On July 23, 2010, everything changed for my family and nothing changed for my family. Greta is now a big sister. Our siblings have their first nephew. My parents have their first grandson. Nana has her fifth grandchild. My grandfather has his third great-grandchild! We all loved August Thomas before he even got to the party.
I don’t believe in religion. But I do believe in goodness, karma, and an energy that is greater than all of humankind. Perhaps that is what God means to you. Whatever we call this unknown force, it gave my wife and I a gift in the form of our son.
Gus is our flesh and blood. He is our gorgeous baby boy. He is a Teravainen! He happens to have Down’s syndrome. I refuse to let an extra chromosome define him as a person. And I will strive to be the best father I can possibly be, just as I have since the arrival of our first Baby T in February last year.
Our family and friends have asked what they can do to help and support us. Here is our confident answer. Celebrate Gus’ arrival with us. Congratulations are what we want to hear. High five me. Bro hug me. Drink a toast with me to Gus. Love our son dearly with us just as you love our daughter. We are not sorry that we have a path ahead of us that was different from what we originally expected. When you sign up to be a parent, you inherit all of the unexpected turns and twists that come with that child.
Gus is still in intensive care because he cannot breathe on his own yet. I understand from the doctors that his respiratory issue is unrelated to Down’s. We will know more as the week progresses. Fortunately, his heart appears to be healthy based on all tests conducted to date.
Michelle and I are going home on Tuesday to reunite with Greta and to sleep in our own beds. Gus will be staying at the hospital for the time being. We are disappointed to not be bringing him home with us right away but we know he needs to be a bit stronger before that can happen.
We appreciate all of the kind words and offers of support our loved ones have extended. We will try to be in touch as much as possible but don’t be discouraged if we are a bit slow to respond. For the time being, just say a prayer for Gus that he will be breathing without oxygen soon. That is the only wish we have at this time!
Around one, I was in the middle of writing the last blog when the pediatrician came into our room. I knew immediately that something was wrong by the look in her face. She closed the door. Then she hit us with a sledgehammer. Gus had several characteristics of a baby with Down’s syndrome. They would not know for sure until completion of a certain blood test but they were pretty sure.
I wanted to vomit but I comforted my wife instead. She was angry, hurt, and scared because the doctor was telling us that our beautiful son whom she carried in her belly for nine months and held in her arms for the first time only hours ago was not the baby we thought we were having. Shell engaged the pediatrician challenging her to defend her position. I sat by numbly holding Shell’s hand. Moments passed by in a blur as they spoke. Finally, Shell and I were left alone with our son to think and talk.
When I saw Gus shortly after he was born, I noticed that he had a lot of skin going all the way around his neck – almost like a huge double chin turtleneck. I presumed there was simply a lot of fetal fluid or something. He was only minutes old and still transitioning from the womb to the world. I didn’t say anything so as not to alarm Shell unnecessarily. The doctors didn’t say anything so I had no reason to worry.
When I saw Gus in the nursery for the first time, his neck was still unusual to me. Even though the temperature thing seemed reasonable, I thought they were spending a lot of time with Gus. Then I remembered that I was sleeping before they brought Greta to us for the first time so I tried not to overreact. No need to panic.
When the pediatrician came in to see us, I said inside my head “Don’t say Down’s - don’t say Down’s” over and over until she actually said it. Holy shit, I knew it.
Only two minutes after the pediatrician left us alone, Shell and I were sitting together still dumbfounded when all of a sudden we realize that Gus is turning blue. I ran for a nurse, they grabbed him and started running down the hall, I looked at Shell to see what she wanted me to do. “Go with them!” she yelled bawling. I ran behind the nurses to the nursery. I feared that our son was about to die in front of my eyes. This isn’t possibly happening right now. I want to wake up and start this day over again. Please save my son.
Finally, they gesture to me that he is okay and breathing. I return to Shell and we hold each other.
-------------------------------------------------------------------
On July 23, 2010, everything changed for my family and nothing changed for my family. Greta is now a big sister. Our siblings have their first nephew. My parents have their first grandson. Nana has her fifth grandchild. My grandfather has his third great-grandchild! We all loved August Thomas before he even got to the party.
I don’t believe in religion. But I do believe in goodness, karma, and an energy that is greater than all of humankind. Perhaps that is what God means to you. Whatever we call this unknown force, it gave my wife and I a gift in the form of our son.
Gus is our flesh and blood. He is our gorgeous baby boy. He is a Teravainen! He happens to have Down’s syndrome. I refuse to let an extra chromosome define him as a person. And I will strive to be the best father I can possibly be, just as I have since the arrival of our first Baby T in February last year.
Our family and friends have asked what they can do to help and support us. Here is our confident answer. Celebrate Gus’ arrival with us. Congratulations are what we want to hear. High five me. Bro hug me. Drink a toast with me to Gus. Love our son dearly with us just as you love our daughter. We are not sorry that we have a path ahead of us that was different from what we originally expected. When you sign up to be a parent, you inherit all of the unexpected turns and twists that come with that child.
Gus is still in intensive care because he cannot breathe on his own yet. I understand from the doctors that his respiratory issue is unrelated to Down’s. We will know more as the week progresses. Fortunately, his heart appears to be healthy based on all tests conducted to date.
Michelle and I are going home on Tuesday to reunite with Greta and to sleep in our own beds. Gus will be staying at the hospital for the time being. We are disappointed to not be bringing him home with us right away but we know he needs to be a bit stronger before that can happen.
We appreciate all of the kind words and offers of support our loved ones have extended. We will try to be in touch as much as possible but don’t be discouraged if we are a bit slow to respond. For the time being, just say a prayer for Gus that he will be breathing without oxygen soon. That is the only wish we have at this time!
Saturday, July 24, 2010
August in July
In keeping with tradition, we’re blogging to you live on the eve and morning of Baby T 2.0’s arrival.
Thursday, July 22, 2010
6:00 p.m. – I am painting Greta’s bedroom door and touching up the kitchen. The wife is folding laundry because she is obsessed with washing clothes in Dreft these past couple days. If you’re not looking, she’ll take the socks off your feet to complete a full load of whites. I’m still in denial that a baby is coming tomorrow. By the way, I think I’ve got a corneal abrasion after a mishap at Lowe’s loading a box onto the cash register’s conveyor belt. Long story. Bottom line is it feels like a pebble is stuck in my eyelid. Sweet.
7:00 p.m. – Nana took G for the weekend so the wife and I are heading out for a quiet dinner date. We head to a tapas restaurant not too far from our place. Glass of Spanish red for the wife. She’s having a contraction. Chopin chilled straight up with olives for me. My eye hurts. Are we really having a baby tomorrow?
8:00 p.m. – We hammer back some delicious grub: scallops, mussels, beef tenderloin, green beans with garlic and almonds, and empanadas. Great stuff. Yes, I’d love a glass of what she’s drinking. We have a 6 a.m. appointment for the c-section. Let’s have dessert. It may be a while before we have dinner without bibs, sippy cups, bottles, or burp cloths.
9:30 p.m. – Back at the casa. Mad dash by mama to finish packing. We check out “Deadliest Catch” on the DVR. (Rest in peace, Captain Phil!) I try to write but I’m too tired. I’ll try tomorrow
11:00 p.m. – Finally, we turn out the lights for our 5 a.m. wake up. I’m so happy to be in bed. This will be the last time we snooze peacefully for possibly the next several months. Mama announces that she’s having more contractions as I drift off to sleep. I’m uninterested and tired.
Friday, July 23, 2010
12:30 a.m. – The wife is having more contractions, she decides to tell me after waking me up. I roll over.
1:30 a.m. – The wife is still contracting. Thanks for the update.
2:30 a.m. – The wife continues to contract. What do you want me to do about it?
3:30 a.m. – You guessed it. Contractions. I’m really annoyed.
4:30 a.m. – Okay, let’s just get out of bed because clearly the wife is not going to let me sleep. Why? Because she can’t sleep. Naturally, I should suffer too, she reasons.
5:47 a.m. – We arrive at Beth Israel Hospital in Boston. Contractions are five minutes apart. We check in.
6:30 a.m. – Michelle’s first measurement. Drum roll please. 4-5 centimeters. Whoa. I guess she is in labor. Glad to know that our son is prompt. How did he know he was going to arrive today?
6:45 a.m. – The original C-section was scheduled for 8 a.m. so the wife’s doctor may not be on time to deliver Baby T. She begins to cry. Don’t mess with a laboring pregnant lady.
7:00 a.m. – Phew. Our doctor made it early so we can get started! The wife is whisked off to have her spinal. I am left alone with my booties, jumpsuit, mask, and cap. I hated this part with Greta. I’m hating this part with 2.0. No other nurses or parents in waiting. I’m by myself.
7:15 a.m. – Wish they had ESPN in here. Or a sports page.
7:30 a.m. – Finally! A nurse comes in to get me. They are ready for me. I have the camera in hand.
7:32 a.m. – I sit next to Shelly’s head. I am avoiding looking beyond the curtain for fear of passing out.
7:45 a.m. – The doctors, nurses, and Teravainens are all chatting as if we’re in a coffee shop sipping lattes and exchanging light hearted small talk – except the wife’s insides are exposed to the world to see and I’m trying not to let on that I’m freaking out inside. The doctors occasionally tug and pull at her belly, which I witness in a shadowy silhouette I wish I could not see.
7:50 a.m. – The wife and I squeeze our hands together in anticipation. They say he’s almost here.
7:55 a.m. – We hear a squawk, finally! And, we’ve got a dong. “It’s a boy!” they announce officially. “What’s his name?” they ask next.
We happily reply, “AUGUST THOMAS TERAVAINEN!” Thus, we give you, August in July.
TO BE CONTINUED…
Thursday, July 22, 2010
6:00 p.m. – I am painting Greta’s bedroom door and touching up the kitchen. The wife is folding laundry because she is obsessed with washing clothes in Dreft these past couple days. If you’re not looking, she’ll take the socks off your feet to complete a full load of whites. I’m still in denial that a baby is coming tomorrow. By the way, I think I’ve got a corneal abrasion after a mishap at Lowe’s loading a box onto the cash register’s conveyor belt. Long story. Bottom line is it feels like a pebble is stuck in my eyelid. Sweet.
7:00 p.m. – Nana took G for the weekend so the wife and I are heading out for a quiet dinner date. We head to a tapas restaurant not too far from our place. Glass of Spanish red for the wife. She’s having a contraction. Chopin chilled straight up with olives for me. My eye hurts. Are we really having a baby tomorrow?
8:00 p.m. – We hammer back some delicious grub: scallops, mussels, beef tenderloin, green beans with garlic and almonds, and empanadas. Great stuff. Yes, I’d love a glass of what she’s drinking. We have a 6 a.m. appointment for the c-section. Let’s have dessert. It may be a while before we have dinner without bibs, sippy cups, bottles, or burp cloths.
9:30 p.m. – Back at the casa. Mad dash by mama to finish packing. We check out “Deadliest Catch” on the DVR. (Rest in peace, Captain Phil!) I try to write but I’m too tired. I’ll try tomorrow
11:00 p.m. – Finally, we turn out the lights for our 5 a.m. wake up. I’m so happy to be in bed. This will be the last time we snooze peacefully for possibly the next several months. Mama announces that she’s having more contractions as I drift off to sleep. I’m uninterested and tired.
Friday, July 23, 2010
12:30 a.m. – The wife is having more contractions, she decides to tell me after waking me up. I roll over.
1:30 a.m. – The wife is still contracting. Thanks for the update.
2:30 a.m. – The wife continues to contract. What do you want me to do about it?
3:30 a.m. – You guessed it. Contractions. I’m really annoyed.
4:30 a.m. – Okay, let’s just get out of bed because clearly the wife is not going to let me sleep. Why? Because she can’t sleep. Naturally, I should suffer too, she reasons.
5:47 a.m. – We arrive at Beth Israel Hospital in Boston. Contractions are five minutes apart. We check in.
6:30 a.m. – Michelle’s first measurement. Drum roll please. 4-5 centimeters. Whoa. I guess she is in labor. Glad to know that our son is prompt. How did he know he was going to arrive today?
6:45 a.m. – The original C-section was scheduled for 8 a.m. so the wife’s doctor may not be on time to deliver Baby T. She begins to cry. Don’t mess with a laboring pregnant lady.
7:00 a.m. – Phew. Our doctor made it early so we can get started! The wife is whisked off to have her spinal. I am left alone with my booties, jumpsuit, mask, and cap. I hated this part with Greta. I’m hating this part with 2.0. No other nurses or parents in waiting. I’m by myself.
7:15 a.m. – Wish they had ESPN in here. Or a sports page.
7:30 a.m. – Finally! A nurse comes in to get me. They are ready for me. I have the camera in hand.
7:32 a.m. – I sit next to Shelly’s head. I am avoiding looking beyond the curtain for fear of passing out.
7:45 a.m. – The doctors, nurses, and Teravainens are all chatting as if we’re in a coffee shop sipping lattes and exchanging light hearted small talk – except the wife’s insides are exposed to the world to see and I’m trying not to let on that I’m freaking out inside. The doctors occasionally tug and pull at her belly, which I witness in a shadowy silhouette I wish I could not see.
7:50 a.m. – The wife and I squeeze our hands together in anticipation. They say he’s almost here.
7:55 a.m. – We hear a squawk, finally! And, we’ve got a dong. “It’s a boy!” they announce officially. “What’s his name?” they ask next.
We happily reply, “AUGUST THOMAS TERAVAINEN!” Thus, we give you, August in July.
TO BE CONTINUED…
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