Today you turn one year old. Your dad and I said to each other last night, “Wow, has it already been a year?” And then in the next breath, “Wow, it’s ONLY been a year?”
The three of us have certainly been on quite the journey this past year. When I look at you, I see the happiest, best-natured baby I have ever met. And I’m amazed when I look at what you’ve come through. In your first year of life, you’ve been through more medically than most people go through in their entire lives. In one year you’ve
--Undergone five major surgeries (it all depends on how we count them)
--Been under anesthesia 16 times (I think, it’s easy to lose count)
--Spent 193 days in the hospital
--Been in 6 different hospitals in 3 different states
--Ridden in three different ambulances
--Had pneumonia, numerous different trach infections, and all sorts of other fun bugs
--Been resuscitated numerous times with an ambu-bag (though thankfully not in a long, long time)
You went under anesthesia for the first time when you were five days old and barely weighed more than three pounds. Your first major surgery happened when you were four weeks old and had just reached the four and a half pound mark. Two weeks after that, you nearly died from a perforated bowel. In fact, you were so critically ill that they did not want to risk taking you downstairs to the OR; the OR came to you (that’s also when you got your trach).
A few days later we found out that your big airway repair had failed. Completely. Several weeks after that you were back on a ventilator, and no one knew why. And that was our miracle. Because that forced us to decide to transfer you to Cincinnati. The day after you got to Cincinnati, they took you off the vent, and you never looked back (aside from being recently post-op). It was as if you were trying to tell us, “Hey, I’m in the right place now, you can relax a little.” (There's a reason that going back to Cincinnati feels like going home to us.)
You spent your first Thanksgiving recovering from major surgery. On your first Christmas you were fairly healthy, but we weren’t even allowed to hold you. (That was a very difficult holiday for us. Up until then, every time we couldn't hold you, you were too sick to care. By Christmas, you were used to us holding you, and you didn't understand why we wouldn't get you out of bed.) We saw decorations come and go for Halloween, Valentine’s Day, and St. Patrick’s Day. We watched them change the clocks back while sitting in the NICU, and then several months later we watched them change them forward again.
We have watched you screaming in pain more times than we can count. PICC lines, IVs, heel sticks, other bloodwork, tubes stuck up your nose, acid burning your entire belly…and yet you always seem to bounce right back. We see other parents agonizing over their children’s vaccines…you get your shots, and after it’s all said and done you look up, as if to say, “Really, Mom? That was all?”
Someone (from one of the many entities we’ve filled out paper for) asked me once to estimate how many X-rays you’ve had. Really? There were many, many days when you were getting two chest X-rays a day. Every piece of your body has been X-rayed, ultrasounded, or MRI’d. Most parts more than once.
And every day, your smile lights up the room. You were smiling at us (intentionally) even before you were due. You love to laugh, and you love to make friends. Sometimes your dad and I wonder where your extroverted nature came from. (“Oh well,” we say, “we have seventeen more years to make him socially maladjusted like us!”)
You (and we) loved the NICU. All the nurses and nurse practitioners were your friends. You loved to give them piano recitals every morning with your feet. It made your day when they would get down on your mat during rounds to play with you. During the afternoons you would sit in your Bumbo and smile at all the people walking by. When we first brought you home from the hospital, I was concerned because you seemed so bored with just me to play with. On one of your developmental screens you lost points because you didn’t “show an age-appropriate fear of strangers”.
You’re only a year old, and yet the world is a much brighter place because you’re in it. We’ve had nurses tell us that you were the reason they came to work in the morning. When we go back to Cincinnati, you’re a celebrity. Everyone in the NICU wants to see you and hear how you’re doing. You have people from all over the world reading your blog. You’ve been the “poster child” for how well a baby can thrive on a trach. We’ve had so many people tell us that all they need on a rotten day is one of your smiles, and suddenly their world changes.
You love to explore the world through your feet. You played your piano with your feet for months before you would bang on it with your hands. You’ve already figured out that you can pick up things with your feet and move them towards your hands. There’s very little in life that gives you more enjoyment than kicking your little legs. Someone said about you once, "He's so excited he can't contain himself, it's bursting out his toes." It took us a long time to teach you how to bear weight on your legs because you were more interested in dancing like the Riverdance people than in putting your feet solidly on the ground.
You also love to stand on your head. When you got bored during a hospital stay up at Johns Hopkins awhile back, you kept trying to do somersaults in your crib. You love to roughhouse, and being swung around (especially upside down) makes you laugh hysterically.
I remember the early days when I mourned the loss of your voice. I still do, some days. I would give almost anything to hear you cry or to hear you laugh. It’s difficult to explain how profound that loss is to me. And yet, you still cry, you still laugh. In fact, your laugh is one of the most infectious laughs I’ve ever heard (seen?). There’s very little in life that gives me more joy than making you laugh.
You are the happiest child I have ever met. When I spend time with other babies, I find myself wondering why they don’t smile much. You’re so happy, in fact, that it can be difficult for us to convince other people that you’re sick. (And sometimes we miss the signals, too.) I will never forget sitting in the ER in Rochester, NY a few weeks ago. We had just arrived there after a two-hour ambulance ride. You had barely slept that night; it was 4 am and you were incredibly sick with pneumonia. You were sitting on the bed in the triage room coughing up blood. You would hack and hack and hack away. And then you’d stop, give us a big grin, and clap your hands. The nurses just couldn’t get enough of you. (It’s a good strategy, that smile of yours; we’re quite convinced that it has gotten you better medical care many times!)
You’re one year old. Right now you’re itching to be mobile. You’ve figured out the knack of rolling around on the floor, and you’ve learned to lunge for things when we put you on all fours. Just recently you’ve learned to bear weight on your legs. Before long, you’re going to be running all over the place, and we’re not going to know what to do. (What DO you do with a mobile baby who is attached to a feeding pump 24 hours a day?)
Once upon a time the doctors told us not to be surprised if it took you a few years to learn to swallow. They said that most likely you would have a severe oral aversion, and it might take us months (or years) to get you to be willing to put things in your mouth. And, as usual, you completely defied their expectations. You swallowed a couple of times the very first time you were ever given a bottle. And your mouth is your favorite place to put things. You’re learning to eat—we can fairly consistently get you to drink an ounce of milk (and sometimes more). While you may not always be interested in eating your food, you love to play with it! And you love nothing more than eating food straight out of the bowl (or at least dumping the bowl out). Ice water is one of your favorite things in the whole world, especially if we let you drink it out of a glass.
In the early days, your dad and I would often wonder what you really looked like. For a long time, we rarely saw your face when it wasn’t covered by a CPAP mask.
When we did see it, it was swollen. So swollen, in fact, that some days you couldn’t even open your eyes. What a difference the trach made. Suddenly we could see your face—we finally knew what our baby looked like! And you thought the world was the coolest thing ever, because finally you could open up your eyes and look around! (In those first post-trach days, sometimes we'd have to cover your eyes with a blanket to get you to sleep. You were too interested in finally being able to look around, unhindered.)
You’re very inquisitive, and you take everything in. You love to people-watch. You never fail to get a stranger to talk to you or make faces at you when we’re at the grocery store. You charm the pants off of everyone we meet.
You LOVE to make music. You get bored by battery-operated toys that don’t really do anything (thankfully we don’t really have any of those). You love toys that you can shake and rattle and bang on. You and Daddy make beautiful music on the piano together. Your favorite way to wake us up in the morning is to go “kick kick kick kick kick kick kick” on your crib mattress. I’m not sure if you’re trying to wake us up, or if you just like the way it sounds (or both). It didn't take you long, when your aunt was playing the ukelele for you, to figure out how to pluck the strings.
Oddly enough, some of your favorite toys are medical leftovers. You can be entertained by a syringe for hours. (Good thing, too, as one of our adventures in the hospital resulted in all of your toys eventually landing on the floor, and we, being the good parents that we are, gave you a syringe to play with instead.) Banging on the trash from a suction catheter kit and sucking on suction catheters make you so happy. We joke that you’re going to be a dentist some day, because you love to suction out your mouth with the catheter when we’re done using it.
You started communicating from a ridiculously early age. You’ve always been good at telling us how you feel, but by the time you were six months old (so four and a half months, corrected) you had already learned how to sign “Mommy”, “Daddy”, and “milk”. When one of us is gone, you sign our name to ask where we are. You mimic all sorts of signs, but we know for sure that you’ve associated the signs with meaning for Mommy, Daddy, milk, more, food/eat, roll over, yes, sleep, and suction (we think). You also sign “water”, but your sign for water looks an awful lot like “Mommy”. And sometimes you sign “milk” for water. When you’re tired, you sign “sleep”. When you’re drinking from a bottle and you’re really excited, you sign “milk” over and over and over again while you drink. Sometimes you whack yourself in the head, repeatedly and intentionally. We’re not sure what you’re trying to communicate there, but sometimes we think it’s your alternate sign for “daddy”.
We’ve learned so much from you, Timmy. Your optimism astounds me. We’ve learned to be much better people, both from taking care of you and from watching you.
Parenthood is certainly nothing like I thought it would be. I’ve made concessions that I never thought I would make and I’ve bought things that I thought were silly (your video monitor has been an absolute lifesaver). That baby book that we bought before you were born? It’s still waiting to be filled out. Those monthly letters I was planning to write you (like your Aunt K)? This is the first. I never think to ask “normal baby” questions at the pediatrician’s office. We’ve thrown the developmental milestone chart out the window. We still use cloth diapers, but I have no qualms about grabbing a pack of disposables when we’re travelling, when we’re headed to the hospital, or when we’re hiding from hurricanes. (And sometimes it seems a little silly that I don’t want your dirty diapers to end up in a landfill, when we’re throwing away medical trash by the garbage bag load.) I didn’t want to be one of “those moms” who has to load up the entire car just to go to the grocery store. Well, we went to the grocery store this evening…we took a suction machine, a feeding pump, an emergency bag, a small diaper bag with the essentials (including a few medical things), and an extra bottle of milk. And that’s our bare minimum. I always thought we would transition you to your crib in your own room from a fairly early stage. Now we actually own two cribs. One for your room, and one for ours. On the nights when we don’t have nursing, you sleep right next to us. On the nights when we do have nursing, I miss seeing the crazy contortions you get yourself into during the night and I miss waking up to your kicking feet in the morning.
I remember someone telling me once that babies are supposed to double (or triple) their birth weight in a year. You were three pounds, nine ounces when you were born. There were many, many days in rounds when I was told that everyone was concerned that you weren’t growing. (I felt like you didn’t get a real chance.) Well, here we are a year later, and you’re a whopping eighteen and a half pounds. Every time we turn around, you’re growing out of your sleepers. I look back on the days when your preemie outfits hung down to your knees. And you’re now wearing nine (and sometimes twelve) month clothes! I remember many times early on thinking that all baby product manufacturers were idiots—why in the world would they make socks, bouncy seats, and hats
You’re a pretty amazing little guy. Your personality is becoming more and more evident. And on days when you get that little mischievous glint in your eye, I feel like I see your uncle peeping through. Uncle Scott would have been so proud of you! Your cousin Lily also seems to have inherited a bit of her daddy’s mischievous streak. I laugh, thinking about all the crazy escapades the two of you are going to get into together!
It’s hard for me to express how proud I am of you. You never give up. Time and time again we’ve been told that you shouldn’t be doing so well, that you should be on a ventilator, that you should be sicker than you are, that you shouldn’t be so happy. And yet here you are.
I love you, Timothy Scott. Thanks for being you.