Thursday, September 29, 2011

Happy Birthday, Timmy

Dear Timmy,

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 so big? And you’ve grown out of all of that stuff that used to be so huge on you.

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.



Monday, September 19, 2011

On to Johns Hopkins...

When this moose left you last, Timmy's heart rate was all over the place. It was going down into the 50s at night (and staying there for much longer than we would like). We decided to go back to see Timmy's new super-duper GI doctor. So on Thursday afternoon, Timmy's mommy left work early and we all headed up to Baltimore for the third time that week. I think this moose could make the drive with his eyes closed! When we got to Johns Hopkins, we spent some time hanging out in the peds clinic, but since they knew we were coming for potential complications, we did not have to wait long. And sometimes the waiting is nice, because it gives Timmy time to play with his mommy and daddy and me.

Soon we were headed back to the GI clinic to meet with Timmy's super duper doctor. She made a few decisions while we were in clinic. Because Timmy's heart rate had been so crazy, she decided that it would not be safe to send Timmy back home. He needed to be admitted to the hospital for observation. She said that one thing that might be causing the heart rate drops (they are called bradycardia) is reflux. In order to find out if this was the cause, she decided Timmy needed an impedance probe. This was one of the tests they were planning to run in Cincinnati in October anyway, so we decided it might as well be done now. Timmy's mommy, daddy, and I agreed that this was a good decision; Timmy did not. But we voted and Timmy lost.

In order to do the impedance probe, they had to take a long, thin wire with acid sensors on it and thread it through Timmy's nose and down into his esophagus. This wire is connected to a little box which records reflux events that the doctors can look at later. The little box had buttons on it that Timmy's mommy and daddy and I had to push if Timmy sat up, lay down, coughed, arched his back, or if his heart rate dropped. The process of inserting the wire was extremely uncomfortable for Timmy (how would you like someone to stick a wire up your nose? I think it is probably worse than having Coke spurt out your nose.) Then, to add to the indignity, they put cardboard wings on his arms to immobilize them so that he could not pull out the wire. This was not very fun for Timmy, but as usual, he was quite the trooper and came through with flying colors!

After inserting the probe, they did an x-ray to make sure that it was in the right place. While they were making arrangements for Timmy to be admitted to the hospital, we waited. One thing we have learned about hospital life is that it is full of waiting. (The clever person that came up with the phrase "waiting room" must have known that.)

Finally, all the arrangements were made and we got ready to go to the hospital!

Timmy started out in the pediatric specialty clinic, which is in a completely different building. So our new friends at Johns Hopkins made arrangements for a shuttle bus to come pick up Timmy, his mommy, his daddy, and, of course, me. It was lots of fun! Timmy and I got to ride up and down on the wheelchair lift.

Finally, we made it to the hospital. Timmy's mommy and daddy signed some paperwork, and we all went upstairs to a pediatric unit that was halfway between intensive care and general care. (They like to keep a close eye on their trached patients, which we are very thankful for!) As we settled into our little corner, we missed our private room in Cincinnati, but we were so glad that someone was finally taking us seriously!

We met lots of new nurses and doctors, and we were very impressed. They promised us that they would take very good care of Timmy.

(Come back sometime soon to hear more about Timmy's adventures at Johns Hopkins!)

Tuesday, September 13, 2011

The continuing saga...part 4

Timmy's life keeps getting crazier and crazier, and the more things that happen, the more this moose falls behind. But tonight we are breaking in a brand new nurse (yay!) but thise moose does not feel comfortable going to bed until we know for sure we can trust her, so this moose thought it would be a good time to continue his story.

The last time I wrote, I told you all about Timmy's mommy and daddy's birthday party. We had a lot of fun and it was so good for Timmy to hang out with his cousins. But another big thing happened that day, we just did not realize it at the time. On Saturday, Timmy started taking a new medicine called Zantac to help keep his stomach juices under control. Timmy's mommy and daddy did the same thing they always do when Timmy starts a new medicine--they asked the doctors what to expect and what side effects to watch out for. They were very happy to hear that it was a drug with virtually no side effects.

Sunday morning, Timmy and his mommy and daddy and I drove home to Maryland. We were worried that Timmy would have trouble with the long drive (since he had only been out of the hospital for a day), but he did just fine. He slept like a log Sunday night and on Monday morning he was back to his cheerful baby self. We put Timmy to bed on Monday night, and, as always, we hooked him up to his pulse ox machine. It is a very nifty machine that monitors Timmy's heart rate and his oxygen saturation levels. If either one gets too low, it sets off an alarm. Normally, Timmy only sets off his alarm once or twice a night. His heart rate at night is usually in the 110s and 120s, and sometimes it will dip down very briefly. But usually in the nighttime, when we look at the pulse ox machine we see something like this:

The red number on top is his oxygen saturation level. We like it to be as close as possible to 100, and 98 is a fantastic number for Timmy. The green number is his heart rate; this is also a good number for Timmy.

But then a few seconds later, we looked at the machine, and we saw something like this:

And then we saw this:

And not two seconds later, it was this:

And this continued all night long. Timmy's heart rate was extremely erratic and it went much lower than it normally does. In fact, Timmy went from triggering his alarm only once or twice a night to triggering it about ten times an hour. Timmy's mommy and daddy and I started to get a little bit worried because this was very unusual for him. I pointed out that Timmy had just started a new medicine, and that maybe it was the Zantac's fault. So we decided to skip his nighttime dose to see if he would get better. But he did not improve--all night long the alarm went off, and Timmy's mommy and daddy and I did not sleep much.

In the morning, when Timmy woke up, his heart rate went back to normal. That day Timmy had a previously scheduled appointment with his new GI doctor at Johns Hopkins. We thought it was very good timing--we suspected his heart troubles were due to his Zantac, and since it is a GI med, we thought a GI person would be the best person to ask about it. We picked Timmy's mommy up from work and drove all the way to Baltimore. We went inside and waited for a long time, but it was worth it, because Timmy got to see a really good GI doctor. We told her about Timmy's heart trouble, and she said that even though it was possible that his problems were due to Zantac, she did not think it very likely at all. She has prescribed Zantac to hundreds and hundreds of kids and has never seen this reaction. But she decided to order a EKG to check things out. It came back normal, and we decided that maybe the heart thing was a fluke. She told us to call her if it happened again, and we all drove home.

That night was much worse. Timmy's heart rate dropped into the low 60s many, many times, and he set off his alarm approximately 20 times every hour. Timmy's mommy and daddy did not sleep that night. Timmy slept like a rock.

The next morning, Timmy's mommy and daddy called the pediatrician. His nurse told them to take Timmy to the ER. We did not like that answer, so we called the new GI doctor. When she told us to take Timmy to the ER, we decided that we did not have very much choice. So Timmy's mommy left work early again and we drove back to Baltimore.

They were very nice at this ER and they hooked Timmy up to the monitors right away. But they did not believe Timmy's mommy and daddy that he was having lots of heart troubles. We kept telling them that it only happened when Timmy was sleeping, but we could not prove it. They called the heart doctors and asked them what to do, and the heart doctors just said to send us home. We tried to call our GI doctor before we left, but we could not get ahold of her. So after several hours of sitting in the ER, Timmy and his mommy and daddy and I went out to the car and drove back home. About five minutes after we left the hospital, Timmy's new GI doctor called us and asked us if they were admitting Timmy. When we told her that they had sent us home, she was upset. So she started making arrangements for Timmy to come back to see her in her clinic the next day.

That night was the worst of all. We started trying to write down all of the times his heart rate dropped so that we could show something to the doctors. Timmy's mommy started counting, and Timmy triggered his alarm 86 times in thirty minutes. His heart rate went down to the low 50s, and sometimes it did not come back up very quickly. Timmy's mommy and daddy and I did not really sleep that night either.

The next afternoon, we drove back to Baltimore to see Timmy's new GI doctor...

(And this is where I end this part of Timmy's ongoing saga for tonight. Maybe tomorrow night, since we will be unable to sleep again because we will be breaking in a new nurse) I will write more.