Saturday, July 31, 2010


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.

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.

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!

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.


Friday, July 9, 2010

House of Pain

I’ve tried to write so many times the last couple weeks without luck. Not sure if anyone missed the posts besides my baby mama and me, but it’s been killing me that all this time has gone by without writing anything considering how much has been going on with our family. We closed on our place finally, moved out of Nana’s basement, painted indoors without AC (can I trade one of my kidneys for central air?) during “vacation” from work, packed up and unpacked, etc. - all of which would have taken much, much longer if not for the help of really supportive loved ones, etc. Anyways, think I’m jammed up on the boards partly because of fatigue from all the unpacking but also because the original post I was trying to write just sucked. So I decided to scrap the last draft and start from scratch.

After who knows how many hours logged watching HGTV with the wife, combined with my two whole summers of painting experience in college, I was ready to go Van Gogh on our house’s ass after we closed two Wednesdays ago. Well, sitting here now in retrospect of the work we crammed in last week, I kinda hope never to watch any show ever again whose title contains the words home, house, makeover, design, or color splash. These “hosts” who double as “workers” subliminally mislead weekend warriors such as myself into believing that a single room, or even a whole house for that matter, can be transformed in merely thirty minutes (twenty-two without commercials). Of course, these half-hour facelifts even include a montage of how bad the place looked before the work, some compelling melodrama about the residents’ life situation, and the climactic “reveal” complete with absurd decorations like a recycled Cessna plane propeller jutting out of a closet door for the 7-year old kid who casually mentioned that she might want to be a pilot some day. Naturally, six days should be enough to add another floor to our house let alone paint a paltry four rooms.

In any event, I haven’t tried so hard to do something so well lately than paint Greta’s bedroom last week. I wasted so much damn time in that damn room trying to make it just perfect. I should’ve saved it for last because the paint part of my brain needed a bit of a refresher course. In any event, we ran out of the really pretty light lavender for G’s walls when we needed one more coat. A few days later when the paint finally arrived from the web site where mama ordered it, the wall got its final coat. When I removed tape from the ceiling to finish off the job, of course I peeled off between one and three layers of prior paint coats from years passed and the ceiling’s edges looked like shit. It was late, it was hot, and the new carpet was arriving the next morning. Hastily, I slapped a coat where needed in the hopes that all peel spots would be covered up. My new mantra of “touch it up later if necessary” mouthed silently from my lips without me even realizing it. To the tired yet still critical eyes of Nana and myself, the room looked a million times cuter than it did before.

At some point during that whirlwind, I experienced a sense of fulfillment performing these “dad” jobs last week that was unrivaled in my whole 17 months of prior experience on the job. In Southie, we had no yard, no garage, no workshop. The environment wasn’t exactly conducive to traditional fatherly duties except maybe assembling hellish Ikea furniture pieces or cooking breakfast on weekends. I couldn’t even hose down our cars because there wasn’t any outdoor faucet to connect a hose. Consequently, in a convoluted way, it felt good to slide a closet door over my middle finger and tear off part of my nail – not because I’m into S&M but because I was yanking up an old carpet in preparation of laying a new one for my children to walk over barefoot on Christmas morning for several years to come. The prospect of future experiences under this roof with my wife and two children genuinely excited me. It was a nice feeling. And then my finger was bleeding on the floor, which felt not so great.

Fast forward to last night, entering G’s room in search of a diaper, I spotted a small layer of paint peeling away from the ceiling and dangling above the crib. I cringed with frustration immediately and hung my head. Slowly, I moved my head upwards towards a higher, invisible being before sighing and reminding myself it could be worse. I could be a Cleveland Cavaliers fans. My advice to them: “touch it up later if necessary.” I’m going to get my roller right now.