Holiday Memories

As usual, I'll start out this blog post with an apology for the dearth of posts lately. Mortimer has been extremely busy. He keeps telling me that he'll put up a post, but he just hasn't had time. Christmas has been a time of reflections for us. For the last several months, we've found ourselves reflecting on "what things were like at this time last year" and thinking about how much has changed and how far Timmy has come in just a year. Holidays last year were hard. Anyone who has spent holidays sitting in a hospital room knows exactly what I'm talking about.

Last Thanksgiving we were only about ten days past Timmy's big emergency surgery, the day we came closest to losing him. We weren't really sure how to celebrate. We thought about dressing Timmy up like a turkey, but we never had time to make it to the store to buy feathers. So we settled for turkey socks. There were no restrictions on NICU visitors, so we had a quick family Thanksgiving dinner at home, and then family members took turns visiting Timmy at his bedside.

As hard as Thanksgiving was, Christmas was much harder. A week before Christmas we made the decision to transfer Timmy to Cincinnati, since the doctors in Columbus

didn't know what to do with him. A few days before Christmas, the Cincinnati docs did a scope and declared his airway to be critical. That meant that we were no longer allowed to pick him up or hold him. We'd been through long periods of time before when we couldn't pick him up, but always before he was either extremely sedated (or paralyzed) or he was too little to know the difference (or both). This time around it was rough, because he was just old enough to know that he should have been held. Visitors were also extremely restricted, so even though we had family come to Cincinnati for Christmas, most of them weren't allowed to see Timmy. But Timmy was a trooper, and he pulled through, cute as ever!

A few days after Christmas was Timmy's big surgery. His airway was critical enough that they booked his surgery for the first available slot in the OR after Christmas, and his surgeon gave up a day of his vacation to come in and do the surgery. (We will be forever grateful.) We were

extremely nervous--we'd already been through one failed airway surgery.

We spent a long day sitting in the surgery waiting room, waiting for news. But in the end, everything went beautifully. No complications. And today, a year and a day later, everything continues to look great!

This year, everything has been completely different. On Thanksgiving, all of our family came to us, and we spent the weekend giving thanks for Timmy's good health, eating food, playing games, and spending much needed time with our family. Timmy even got his first taste of pumpkin pie!

Around the same time, Timmy once again defied expectations. Even though we'd been told in October that crawling was far, far away and that there was no way he'd be crawling by Thanksgiving, a week before Thanksgiving Timmy decided he was ready to be mobile.

(And for those of you who are wondering, we have, sort of, solved the feeding tube problem. If we put the IV pole on its lowest setting, and if there are no toys in the way, Timmy can pull around his pole!)

Christmas has also been wonderful. Looking back to where we were a year ago, we're so lucky that Timmy is doing so well and is, in many respects, a perfectly normal one-year old who loves making messes, getting into things he shouldn't, and refusing to take naps.

Timmy had lots of fun at church on Christmas morning. (I'm afraid some people may not have been paying attention to his grandpa...)
















Timmy was dealing with the beginnings of a cold on Christmas Day, and the next day he was pretty sick. We were about five minutes from heading in to the ER when things turned around, and we have officially weathered a cold with no hospital stay! (Thankfully this seems to be a virus with few respiratory symptoms.)

It's amazing how far he's come in just a year. We can't wait to see what sort of mischief he's getting into next Christmas. Merry Christmas everyone!




(And Mortimer's New Year's resolution is to keep up with the blog, so hopefully you'll be hearing from him soon.)

Wires, wires, and more wires

Goodness gracious, I'm very very sorry it's been so long since I last wrote; you all must have sore bottoms from all the pins and needles you've been sitting on! My only excuse is that life with Timmy is always busy as this blog has so well documented (up until a month ago).

To continue the Johns Hopkins story from August...

We are used to having Timmy hooked up to stuff. In fact, the very first time Timmy had a few minutes when he was not hooked up to at least one wire or cord was in March (and that was only for a few brief moments during a bath). These days Timmy is hooked up to his feeding pump 24 hours a day, and a pulse ox when he is sleeping, and his mist collar at night. We are convinced that a wire elf lives in Timmy's closet and sneaks out to tangle up all the cords when we are not looking. We are very used to wires.

But our stay at Johns Hopkins took the wires to a whole new level. It did not set a record--our record for the greatest number of wires/leads/tubes leaving Timmy's body is 19 (I think), but that was last November when his intestines were perforated and he nearly died. This time around Timmy was happy and healthy and just wanted to play. And what better to play with than extra wires? It makes us laugh at the "safe-sleep" people who say that a baby can't get within 5 feet of a wire/rope/etc or they will die.

Anyhow, like this moose told you last time, they decided to do an impedance test to see how much Timmy was refluxing and if his pH levels were well controlled. The other thing they were hoping to find out was whether or not reflux episodes were causing his crazy heart rates. We got up to the floor, gave Timmy's medical history sixteen thousand times to a bunch of different people, and we got Timmy settled in.

We brought Timmy in already attached to a feeding pump and to the little box that records the results of the impedance probe. We then hooked him up immediately to a pulse ox (wire on his foot) and to another set of leads (three on his chest/belly) to monitor his heart rate and breathing. Then Timmy was ready to play! We thought that sounded like a lot of fun, until we looked around. Timmy had his crib, and then his mommy and daddy and I had a teeny little bit of space, wide enough for one of those purple armchairs that all hospitals seem to have. (Oh boy, did we miss our room in the NICU!) Then we started to calculate the lengths of all the wires Timmy was attached to, and we realized that it probably did not matter that we did not have much room, since the wires just barely stretched long enough to reach the chair next to the crib. But what do you do with a little boy who is very active and who has suddenly had his arms immobilized? Timmy's favorite games are rolling around, shaking things to make noise, and roughhousing with his daddy. None of those were good options.


This is the best we could do (and here Timmy's wires are stretched as far as they could possibly go).

When we packed, we only had room for one book. (We read "The Belly Button Book" over and over and over and over and over again.) But the real lifesaver was Timmy's iPad! He could still bang on it with his arms immobilized, and with the speech apps, the painting apps, and the e-books, Timmy was able to stay entertained. The iPad also allowed us to bring his lullaby CD along, which made the hospital seem just a little bit more like home.

I know that Timmy's iPad was given to us for the speech apps, and we absolutely love them and use them all the time, but we have also found it useful for so many other things! We are even working on getting Timmy's medical records organized on it so that we can stop hauling the quickly growing expandable file with us everywhere we go.



Finally, nighttime came, and Timmy went to sleep. We discovered that it was up to Timmy's Mommy and Daddy to push all the buttons on Timmy's box all night long (whenever his heart rate dropped significantly). This would have been fine under normal circumstances, but they had already been up for most of the night, three nights in a row. I would have helped but my hooves were too big for the buttons. And I guess all the night nurses had the same problem. Anyway, we crossed our fingers, hoping that his heart rate would be as crazy as it had been, so that we would have it documented.

Well it turned out that his heart rate didn't go as low as many times as the previous nights but there was still a good amount of occurrences. One of them he stayed in the 60s for quite awhile while the doctors happened to be observing him--Go Timmy! It was nice to have proof that Timmy's Mommy and Daddy weren't lying or going crazy :) At that point the doctors decided to hook him up to an EKG which meant that for a few minutes a nurse had to push a button to record his heart patterns at the exact time that they were low. It didn't work so well since it's hard to anticipate when it will happen (I tried using ESP but it didn't work so well).



In the morning, Timmy and I played jump rope with all his wires (double dutch...the works!).






















While we were playing, he doctors decided they were concerned enough that they wanted to keep Timmy for the second night to continue the impedance probe and also put him on a Holter monitor which is a continuous EKG. The Holter worked much much better than the ESP EKG's.



The next day (Saturday) we were able to disconnect Timmy from the non-surgically implanted wires and go home!



Since Timmy had thrown all the toys Mom and Dad brought on the hospital floor (including me...I'M UNCLEAN, I'M UNCLEAN!!!), the only thing he could play with on the way home was a 60 ml syringe while I mournfully looked on.



In conclusion, the doctors never actually found out for sure what was causing Timmy's crazy low and erratic heart rates but his parents had a pretty good idea. Saturday night Timmy's heart rate was back to his normal 100 to 130 through the night and so Timmy's GI doctor agreed with his brilliant parents that they were right all along and it must have been an extremely rare reaction to the Zantac. No more Zantac for Timmy. Not even on his birthday or Christmas. Not even with purple sprinkles on top.

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.

Love,

Mom

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!)