“Kathleen, there’s no seventh floor.”

This is what started out one day that will live forever tucked away in our hearts.  As many of you reading this have already experienced or will someday, taking a family member to the hospital can be a stressful and overwhelming experience. In the case of taking your child to the hospital, a whole new set of worries come into mind. We knew that once we brought Alexander home in July, that we had many, many trips to the hospital in our future. We’ve tried to stay lighthearted through everything so far, and *knock on wood* it has seemed to help ease our little man’s stress levels as well.

So back to mystery of the seventh floor. When it’s 5:59 AM, and you’re told to report by 6 AM for pre-op with a kid who doesn’t understand why he didn’t get breakfast, the last thing you want to experience is getting lost. In our case, it was not even being able to find the right floor, let alone office. This was not the first, nor will it be the last of my Mega Mommy Fails. In the chaos of handling logistics, precertifications, and whatnot, my handwritten notes from the surgical office mentioned 6 am, 7:30 and a few acronyms. I didn’t pay that closely to the location, I just knew it was on the 7th floor.

However, when we got to the hospital, there was no 7th floor. I panicked and figured that I misremembered, so we went up to the top floor (6 for those of you keeping track) which was identified as Waiting- General Surgery. It was a ghost town. Seriously, there was NO ONE stationed at any desk, waiting around, or anything on an entire floor of a huge city hospital. Alexander and I continued to orbit the top floor, while Brian headed downstairs in search of someone, anyone really, who might know what was going on.

Luckily, Brian quickly found out downstairs that we were in the wrong building, and soon we were shuttling our little guy off to the new wing. As we were one of the first surgeries of the morning, the patient reception desk was more than a little eager for our arrival. The 7th floor “sky lobby” was incredibly dramatic. I joked that it looked the lobby of a really swanky hotel– the entire floor was floor to ceiling windows with a beautiful view of Hyde Park and the Loop, and a player grand piano.

All all-time high/low: photographing our surgical waiting room. Seriously, it was just stunning and a great place to stress out!

Our “pre-op concierge” (yes, I just said that) whisked us off to check-in, where the intake nurses cooed over our little man. Apparently, very few pediatric surgeries are done in the main hospital (most are done next door at the children’s hospital), so getting short patients is quite the treat. They managed to find a tiny hospital gown and those nasty hospital socks, and soon it was revenge of the koalas in spaceships all over again.  We began the grand procession of specialists, as the various medical teams stopped by to introduce themselves and get us to sign off on lots of forms. The highlight was Alexander clapping on cue for the Anesthesia team after their spiel– the look on those doctors’ faces was priceless. It was a much-need lighthearted moment before the inevitable. Pretty soon though, we bid goodbye and good luck to our little boy, and one of the Anesthesiologists carried him away into the OR. I might have wept just a little after they took him away, and Brian’s eyes looked a little misty too.

Convincing his mama that he’ll be fine, as long as she takes care of Mr Clam and Kokkonisto

Without getting into too many details (too late!), the overall surgery went great. What wasn’t so great was dealing with the pager they gave us to keep track of our man. With the idea of giving families more freedom, they issued everyone restaurant-style beeping/vibrating pagers; they’d use these if any news came in from the OR regarding the status of a patient. We were grateful to be able to leave the building and get a coffee and some air, but it felt as though that blasted pager went off every 15 minutes. I think you all know how jarring those restaurant pagers can be, so you can imagine how our nerves were shot by the third page (most of which were just messages like “Alexander’s doing great!”) The funniest surgery-related anecdote is that as we were returning from Starbucks with some much-needed caffeine, we ran into our anesthesiologist with coffee and a donut. Yes, the one that introduced himself as the person who’d be taking care of Alexander! As soon as we made eye contact and he saw my jaw drop, he ran up explaining that Alexander was doing well and that his team had just rotated him into a few minute break. It made sense, but it definitely freaked me out when  first saw him.

Mr Clam waiting not so patiently for his friend in surgery

Little man got all of his anticipated surgical work done for #1 (of about 4 or 5 total) in addition to some auditory repair. All the surgeons seemed really happy, and we were back in the recovery room ahead of schedule. Unfortunately though, we ended up spending close to 6 hours in recovery with some fantastic post-op nurses and anesthesiologists; Alexander didn’t want to wake up but did finally thanks mostly to Mr Clam and Kokkonisto, the sheep blanket from Grandma Amy.  Unfortunately, his hungry raging threw his heart rate monitors into a frenzy. I was touched how kind the staff was and also how ingenious the nurses were in figuring out how to comfort a patient much smaller than they were used to (which included creating a makeshift cleft feeder out of various medical supplies!)

And now for a quick aside– I take back anything bad I’ve ever said about anesthesiologists before (not that I’ve said much).  I was truly surprised at how caring the entire anesthesiology team was long after the surgery was over. The Attending (aka donut man) checked in on us every 20 minutes or so, and ended up calling over to the children’s hospital and insisting on our placement in a higher-care unit (as opposed to a general floor). I also caught him looking from a distance at Alexander’s monitor, and saw him give a little fist-pump when our little man started to calm down. The doctor totally lost his composure when I called him out that I saw him relieved. He admitted that he was really worried for our little guy, and seeing that level of compassion in a doctor who normally never sees the patient awake was refreshing and somewhat redeeming.

Alexander’s transfer and stay at the children’s hospital was exactly what we expected– a lot of primary colors, whimsical nursing scrubs, and friendly staff. We attempted to sleep a little last night, but it’s hard to sleep when your kid is howling in pain.  Luckily, we were able to wean our guy off the heavy meds last night. After eating breakfast this morning, he threw his cuffed arms into the air demanding freedom for him and his stuffed animal entourage– which included a stuffed sheep blanket, a calico cat, and of course, Mr Clam. Because of his facial surgery and that fact that he’s 17 months, we have to use little stiff cuffs that cover his elbows and restrict his movement. This way, Alexander can still move around but won’t be able to rip out his stitches or try sticking toys/anything into his mouth. He absolutely HATES it, but he’s adapted well so far. Brian and I worried that he’d be limited in movement, but as soon as we got home, he took off crawling across the living room floor.

We were out as soon as we got clearance, and the three of us made it home safely by early afternoon today. We celebrated in true Illinois fashion by getting an emissions test on my car and running a few errands  (which was mostly to try and keep awake and not take a too-late nap). Now, our little man is sleeping somewhat peacefully as we finally unwind from a pretty big parental experience. Our surgeon would like to schedule the next round of work for about three months from now, assuming Alexander continues to recover well; though I’m sure each surgery will be an adventure unto itself, I can promise you one thing–

I’ll be able to find the seventh floor!

A formal, rather serious post-op portrait with Mr Clam. This photo was immediately followed by a loud “La!”

And for those of you wondering, Alexander hasn’t lost his smiles or la’s! We think it hurts him to smile a little now, because he does still smile, but the stitches do impact how long he can hold it. He’s still figuring out how to use an upper lip, but after hearing several la’s and watching him eat, he’ll get the hang of it in no time!

I write this post with an optimistic but slightly wistful tone. Tomorrow morning, my little boy will be going into surgery.  Although I’m certain the sight of him with a little IV and hairnet will make me well up with tears (I’m getting sniffly now just typing it), he will perhaps surpass his current maximum cuteness potential.  Packing for his hospital stay, I’ve tried to think of things that will soothe and comfort him– and as of now, most of what I have packed is stuffed animals and his beloved sheep blanket, Kokkonisto.  Having taken great pains to rid him of his pacifier, he’s been struggling the past few days to latch onto something for comfort aside from our presence and the ubiquitous Mr. Clam.  I just hope that seeing us as he’s wheeled out of recovery will be a hint of stability for our little man.

When I corresponded with a fellow adoptive cleft palate mom before we brought Alexander home, she told me that you experience a form of loss when your child first goes through surgery.  Her words didn’t quite resonate until now. When I think of Alexander, I first imagine that big, wide grin that was so heart-warming and comforting when we wondered in China whether we had the stamina to be his parents.  I think of his signature “La” and how it will be impacted and altered by the trauma of his surgeries.  Then I take a moment and think about everything he experienced in life before meeting us, and yet even with the huge change in being handed over to complete strangers from a different continent who smelled and sounded different, he adapted. I know, I know, everyone says kids are resilient and bounce back quickly, but let’s face it.  No one would volunteer their child for surgery unless it was absolutely necessary. (Heck, I know most people evaluate the minor bumps and bruises of their children in hopes that a bandaid and ointment will do in place of an 8-hour trip to the local ER. I mean, they didn’t lose THAT much blood, did they?!?).

For months, I had printed photos of Alexander on my dresser in our bedroom. One of the first things I’d see in the morning and last things before bed was the smile of our future son. I’ve tried not to think about it too much, but I do wonder how his face will change, his voice, his smile… While I am absolutely ecstatic about his surgeries in light of their long-term impact, I will freely admit that I’m not looking forward to the immediate future when he’s home, scared, and most likely in some form of discomfort and not in any mood to be his jovial self.  I also feel a little saddened knowing that his name for me (“La La”, as a response to my coaching of “mama”) will most likely change. Although I know that all kids change and grow, I’ll always keep his first enthusiastic “La La” in response my to hand signing of mama in my heart long after he’s more articulate and trying to convince me why his curfew needs to be later.

And so I don’t end on a sad note, I’ll leave you with some photos from this past weekend, when my Aunt Carla came to visit and meet with Alexander. There was a lot of smiling and clapping, and Alexander even had his first experience on a swing set and slide. It was quite the weekend.

Once again, proving that it’s next to impossible to photograph this kid without him smiling. Look Mama! No pacifier!

I think they get along  — posing with his Great Aunt Carla (emphasis on the great!)

This kid is going to LOVE Six Flags.

Alexander inquires as to whether Mr. Clam can also ride on the tractor from Great Aunt Carla.

I ask you, dear friends and loyal readers, to keep Alexander and his parents in your thoughts and prayers tomorrow morning. We could certainly use them.

Although I had a product review all ready to post, I decided to put that on hold in light on the recent ongoings at Casa Kelly. The biggest news here is that Alexander’s first surgery has been scheduled for this Monday morning, Aug 19th, at Comer. It’s likely to be mostly lip reconstruction with a little palate, the majority of inside work to be done in subsequent surgeries (probably 3 or 4 others a few months apart).

It feels a little odd to be preparing our little guy for surgery, considering that we can’t really reason with him about short term pain and discomfort for long-term gains. Similarly, he didn’t think to call our healthcare provider to begin the process for pre-certification of his surgery.   I feel strangely grateful to have gone through so many hospital stays myself, as I feel fairly prepared for logistics, and the surgical team was surprised when I called to ask about the pre-op instructions. “Normally, families don’t call to ask about the last-minute marching orders.” I politely said that I hated being tied to the phone the entire pre-op day waiting for the intake folks to call, which inevitably ended up in a game of phone-tag. So in short, we’re all set for Monday and will most likely just have one overnight stay.

So where does the title fit in? Well, as I mentioned in a previous post, Alexander’s surgery and repair will mean the End of the Pacifier (said in a deep, dramatic voice). It’s one thing to have a doctor tell you this, and it’s totally different to try and prepare your little kid for something they can’t fully understand. I still tell him every time he’s eating with the pacifier that next week, he won’t be able to use it; I know I’m saying it mostly (all) for my benefit, but it helps to vocalize those words considering the chaos that ensues.

Brian and I have developed a few “games” which involve asking for the pacifier or distracting him in order to help him realize he can swallow without it. Though he’s come to rely on it, we’ve witnessed firsthand that it’s not essential to his eating. It definitely makes it easier for him, and frankly, I can’t really blame him for using it. He found a way to make eating easier/possible, and so why not use it? The games have worked for small amounts of time, but this kid is smart. The original game of “please give me your pacifier” resulted with him trying to just graze our hand with it but hold on for dear life. Similarly, when we’ve tried with the spoon and no pacifier, he just does his best effort to knock the spoon out of our hands.

Well, today, Alexander’s mama busted out the tough love. I snipped the pacifier.

I started with a few small holes during “Elevensies” and worked my way up to a full hole during Teatime. I kept snipping off more and more, with dinner being a noticeable hole, and bedtime bottle looking pretty severe. He seemed a little confused around dinner time, but everything hit the fan tonight. The second he put the pacifier in his mouth, he let out a shrill cry and looked at me with an unmatched fear and fury. Something was different and wrong. So very wrong. Brian looked at me from the kitchen– we knew eventually that the next snip would be one too many, and this was it.

The good news is that Brian and my attempt to make him swallow on his own was successful– he drank his entire bottle in the usual time frame. The only big difference is that he was howling and turning red with rage this time. While it kills me to see our little guy unable to be soothed by something he’s depended on for so long, we know that if we can get him not using the pacifier now, post-surgery shock of no pacifier might be a bit easier. He’ll have (little) arm restraints when he’s post-op for at least a week that will keep him from bending him arms (ie putting his hands in his mouth or anywhere near his face), but I’m sure the anger of no pacifier will still be present.

Although we feel incredibly fortunate for the laid-back son finally asleep upstairs, we knew that having a child with medical needs would come with many challenges.  Tonight, all I kept thinking during the rage was “I’m not your friend, I’m your mom. Those are two completely different things.” I can only hope that one day in the distant future that Alexander will consider me a friend, but for today, I’m more than thrilled to be his mom.

And for now, we’ll take things one snip at a time.

I’ve been waiting to post this story for a LONG time. Several of you have asked us about stories we didn’t feel comfortable posting during our trip to China. Sure, our trip wasn’t perfect, but we didn’t really have to censor much. However, there was one fairly significant story that we didn’t relate in detail until now… and so I bring to you….

The Pacifier: An Epic Tale

The elusive pacifier

When we first met Alexander, he was happily using the pacifier we had seen before in many, many photographs. I had considered purchasing a few additional pacifiers, but I figured that he’d be using what he came with (if at all), and I didn’t want to encourage using a pacifier if he didn’t show up with anything.

Our first day with Alexander included trying to figure out how he ate. Thanks to some assistance from his nurse and some ingenious thinking, we realized the next morning that he used his pacifier to help form a suction when trying to eat. What nurses considered fussy eating was really our little man trying to close the gap in his lip in order to eat.

We were thrilled! With this new-found knowledge, we were in business. What took the Beijing folks over an hour we could then accomplish in less than 30 minutes! Alexander was happy, we were relieved, and we thought the problem was solved. However, little did we know that our concern was just starting!

A few days into our time with Alexander, we noticed that he was not only sucking on his pacifier, but that he was chewing on it… really hard. We could hear him grinding his teeth when the pacifier wasn’t in, and we could only guess what was happening when he was dampening the sound with the small piece of rubber. As you might guess, one result of our son’s cleft palate is that some of his teeth are rather misaligned, so the sound of teeth on teeth is sadly fairly common in our home. But back to China… when we finally got up the courage to look at his pacifier, our fears came true– he was slowly ripping his pacifier apart! The pacifier had been ripped about a third of the way through, which meant that it was only a matter of days until he ripped it completely off, either accidentally swallowing it or just ruining any chance he had to eat.

This wouldn’t be nearly as terrifying if Alexander hadn’t shown us that he needed the pacifier to eat. We tried experimenting by taking the pacifier away, but he refused to eat without it. Even if we presented a bottle to him without handing him his pacifier first, he would freak out. We knew that we needed to find a replacement stat.

Brian and Bill tried several locations and multiple pacifiers– each time, we’d gingerly hand the pacifier to Alexander and wait nervously. He’d pop it into his mouth– you could see him trying it out… then he’d eject it with a frown. Not the right one! After several days of unsuccessful pacifier hunting, we began to give up hope. The “funny” part in all of this is that what Alexander’s pacifier was is your run-of-the-mill Nuk variety– nothing special. In China, however, it’s next to impossible to find this brand.

Our guide, just as concerned as we were, took photographs of multiple angles of Alexander’s pacifier and immediately began trying to contact his adoption/consulate friends in Guangzhou (while we were still in Taiyuan). Meanwhile, I posted to multiple China adoption message boards trying to see if anyone who was in-country either in Guangzhou or on their way there might have a Nuk.  Within hours, I had over 20 responses from adoptive families, and Bill had heard back from multiple adoption guides. While I just had a few leads, Bill found a woman in Guangzhou with an exact match waiting for us.

As soon as Bill arrived in Guangzhou, he took a cab across the city to pick up the coveted pacifier. He brought what looked like almost the same thing back, and we watched nervously as I handed it to Alexander. He looked at it, paused, and then placed it in his mouth… and it stayed there! We were saved!

Though he continued to chew away on his new pacifier, we figured that we’d have enough time to get back to the USA. We did, and one of the first things we did after returning home was to find some back-up pacifiers. Comically, we must have purchased the wrong size the first time because he spit out the first round we purchased for him here too!

Now that Alexander’s gearing up for surgery, we’re trying to get our little man off the pacifier. I’m spending several hours a day working with him to help his realize that his reliance on the pacifier is more psychological than physical; with enough effort and concentration, he can swallow and clear his throat completely. I ask him to hand me his pacifier, and he hands it over. He promptly starts to bawl, but then he usually can swallow while whining and begging me for the pacifier back.

Thinking backward, it feels like a long time since we were all petrified that our son wouldn’t be able to eat and end up in the hospital on an IV. Now, we’re preparing him for the hospital and asking for his pacifier back….

For those of you less versed in medical administration (which is most of you out there), an EOB is the Explanation of Benefits that you receive in the mail after a medical consultation, which always includes my favorite line “This is not a bill.” Our first EOB arrived yesterday for all of our visits to Comer, and we anticipate enough of these arriving at our home in the following months (and years) to wallpaper most of our first floor. This afternoon Brian and I joked that the EOBs arriving from today’s day-o-specialists alone might meet our annual out-of-pocket maximum.

Today was our big surgical consult with the Craniofacial Team– and let me tell you, they were thorough. We were “warned” that this would be no 30 minute special. This team, consisting of a plastic surgeon, orthodontic surgeon, geneticist, speech pathologist and feeding therapist, and an ear-nose-and throat doctor along with their respective gaggle of interns, residents, and fellows, all met with Alexander today. We dutifully rolled our stroller from small exam room to exam room while Alexander worked his magic. While he wasn’t thrilled to have people poking around in his mouth, he smiled for just about every photograph the team took. It was pretty darn hysterical to have our little man sitting on an exam table throwing out this huge grin to a bunch of doctors more than ready for a bucket of tears– and he even did the Kelly “outstretched arms” pose complete with jubilant “la la” once for the orthodontist.  Needless to say, he made an impression.

We can’t say enough good things about the team so far– the geneticist even went searching for our next appointment doctor so we didn’t have to sit around too long in the waiting room– who does that!?!?

The result of all our appointments is pretty much what we expected. Our man needs surgery, and most likely several. Because of the size of his cleft, the surgeon wants to do several progressive surgeries rather than 1 big one. That way, his little body will better be able to adjust to the  changes, and the surgeries will have better chance for taking. (a constant risk for any cleft surgery is that holes occur or the palate closure pops back open over time). We are waiting to hear back from the surgery scheduler, but we figure we’ll hear about potential dates soon. Also, although it’s never a 100% guarantee, the geneticist was really pleased with Alexander’s progress and seemed somewhat surprised that he was able to stand with support. Cleft lip and palate is one of the most common birth defects in the world, but it is often also associated with other disorders or complications. From everything they assessed, it looks as though aside from institutionalization-related delays, our little man is right on track.

I also have to admit that after 6 appointments, I finally welled up a little at the hospital today. I know many people who are reading this have gone through similar and/or more trying experiences with their own kids, but I feel compelled to share. I made it through almost the entire day, but when we finally got to some behavioral auditory testing, it hit me how much this little guy is going through (even though hopefully he will have limited memory of it, if at all). I was standing in the control booth with one of the therapists while Brian sat with Alexander on his lap in the testing room. Luckily, I was able to pull myself together before the technician and everyone else could see, but it definitely hit me.  Knowing my little man has a long road of medical care and therapy in front of him just breaks my heart, but I am grateful his cheerful spirit and trust in us will make it easier.