It’s been 14 years!!!

I don’t know how long this antiquated blog site will stay up.  I check it every couple of years and am surprised it still exists. If you have found your way here because you were searching the various medical terms that our doctors were investigating, then my thoughts and prayers are with you because I know the fear and frustration and angst you are dealing with. Rory turned 14 years old this year, and she has never had a relapse or related issue to the situation she dealt with in her first 6 months. I don’t know how your story will end, but I want to encourage you to not give up hope. Don’t stop fighting. Don’t be afraid to ask for help, even if you think no one is listening. My daughter is living proof that medical science doesn’t have all the answers, they aren’t 100% everytime. And sometimes the outcome is positive despite the gap in their medical knowledge.  To this day, we really don’t know what was going on with Rory, but with patient doctors, parental fortitude, and mostly the grace of God, she managed to come through it all. Today she is a happy and healthy teenager, well, at least as happy as teenagers can be :). My hope for you is a similar outcome, but I pray that you can find peace and comfort no matter where you path leads. 

-Eric

Happy Birthday, and an even Happier Anniversary!

June 27 is the exact day, one year ago, that Rory went to the Rady Children's hospital emergency room because her tummy was very tight and distended, she was writhing and twisting in obvious pain, and she could not move her bowels to relieve the pressure building up inside her. She was twenty days old at the time. I thought it fitting to post the final update of this blog since this anniversary has passed.

If your first thought was "Rory is already a year old?", then thank a teacher, because your math skills have served you well. She's one year and twenty-three days old to be precise. What has happened since the last post of 4 months ago? Much. Much as happened since that time, my friends.

So while you may have assumed (fairly) that this blog was already finished based on the increasing lapse of time between posts, please allow me to close this story with a proper ending. Not a 'Chuck Noland at a cross-roads' ending, leaving more questions than answers about the fate of our intrepid hero. I'm talking about an ending that ties up all loose ends, leaves no questions, and knocks you out of your seat. I'm talking about a 'Bruce Willis is a ghost', 'Verbal Kint is Kaiser Soze' and 'Rosebud is a sled' quality ending here. Alright, maybe knocking you out of your seat is a bit ambitious.

Rory walks, she talks (goo-goo gaa-gaa, baby), she eats (solid foods), she poops (unassisted). Rory thrives. All without the apparent need for modern medicine, surgical support, herbal remedies, or shamanism to cure her ails. She's had her last appointments with her surgeon and GI docs, with instructions not to return. She has been incident free for longer than I can even remember, and our fears that she will relapse are all but gone. Any remaining concerns are more a memory of what could have been than a worry for her future. I can confidently report that Rory is healed. And other than that, there's not much more to say. We thank God for Rory's health and prosperity. We thank you for your thoughts and prayers. And we thank Rory for showing us that our family possesses a strength we did not know we had, nor ever thought we would need.

"Vote for Pedro and all your wildest dreams will come true!"

Rory and I spent the evening at home together while Mom and the other two kids were out and about. She lay in my arms, remarkably calm, while I waded through TV channels searching for something to catch my eye. There are a handful of movies that I will stop on, no matter how many times I've seen them, no matter what point they are at, and despite the fact that they might be readily available on Netflix or on DVD somewhere in the house. This evening it was Napoleon Dynamite, the quirky story about a weird high-schooler living in small-town Idaho, surrounded by an equally eccentric band of outcasts. Tonight, as I watched the final throes of this movie once again, I couldn't help but feel a parallel between the title character and my very own infant daughter.

Near the end of the movie [spoiler alert!], the kid lays it all on the line and puts his own shame aside to help a friend in need. After performing a dance that could easily rival Michael Jackson's Thriller video for cinematic and choreographic greatness, he runs off the stage, humiliated as the crowd sits motionless in shock and awe. After a moment of hesitation, the auditorium erupts into deafening applause, and the tempo of the movie immediately changes from one of conflict and challenge, to hope and optimism. From that moment on, everyone around Napoleon seems to attain the happiness that was somehow eluding their lives. I've seen this movie probably a dozen times or so. But when that audience burst into cheers, I was right there with them. My heart leapt, and I wanted to stand up and scream, "you did it!". And then I realized it was not Napoleon's defeat of adversity I wanted to exclaim, but Rory's.

It was only in that instant, caught off guard and alone with my baby girl, that I dared consider she just might be past all of this. It's been quite a while since the last post, I know. But there really hasn't been much to tell. The manometry study never happened, with CHOC doctors seeming to dismiss it's criticality and indicating they wanted to wait until she was at least a year before proceeding. Meanwhile, we continued to do what we do, which is to say, Christine continued to do what she does. Rory's had her ups and downs, sometimes having BM's several days in a row, and sometimes going several days without (that's bowel movements, for those of you with more refined sensibilities). We were instructed to apply the dilations as needed, but with less and less frequency, and to keep on track for those milestones typical of normal kids. Target milestones, like eating solid foods, may be exciting achievements for most parents, but they are deeply distressing for the parents of a baby who's bowels don't seem to work properly. We really had no idea how solids would pass through her.

But I can report that she is eating like a champ. And she's been passing it like a champ, too. I can't say for sure, but it's almost as if the solids navigate her system better than the liquid diet of a 0-6 month old. Either that, or her bowel has finally matured, her brain has finally started to communicate with her rectum, her physical mobility helps things move along properly, or the power of prayer is in the process of healing her. You take your pick, I have mine. And yes, I did say mobility. Rory began crawling just around Christmas time, now she pulls herself up on everything and stands on her own two feet for several seconds before realizing what she's doing and falling on her butt. There's another possibility for the skeptics out there! Perhaps the constant jarring of her rump each time she falls has loosened the muscle a bit. Whatever the corrective measure, we are thrilled with how she's coming along. Enough so, that I dare to think the worst could be behind her, that she may have beaten this thing. As always, only time will tell, but it remains on our side. Rory is fast approaching 9 months old and so far we've avoided return trips to the ER, Botox injections, ileostomies, and invasive corrective surgeries for things we're not even sure are the problem. Not too bad.

I voted for Pedro, and I think all my wildest dreams may be coming true.

The Shirt Doesn't Lie!

"How's Rory doing?" A common question I get often. The answer: Good. Rory's doing good. She continues to respond well to the dilations, and quite frequently does not require them. We await the manometry study from the Children's Hospital Orange County (you can call it CHOC, if you're in the know). 

It has been a big pain getting the referral required to go 'out of network' for this test. But CHOC is the only place in southern california to get this done for babies, so we have no choice. And while you might immediately jump to the conclusion that the insurance company is the hold up, that isn't necessarily the case here. The referral was supposed to come through the GI's office, and we're pretty sure at one time or another they 1) dropped it, 2) referred to the wrong hospital, and 3) ordered the wrong test.

But, with some help from the pediatric surgion, even calling CHOC and speaking to those folks himself, we've finally got a date for the initial consultation! Yes, initial consultation. You didn't think they were going to let us walk in off the street and get the procedure performed, did you? At least we've got our foot in the door now. Unfortunately, I doubt we'll make the schedule for the actual test being performed in this calendar year.

From the CHOC website:

Anorectal manometry
This test helps determine the strength of the muscles in the rectum and anus. These muscles normally tighten to hold in a bowel movement and relax when a bowel movement is passed. Anorectal manometry is helpful in evaluating anorectal malformations and Hirschsprung's disease, among other problems. A small tube is placed into the rectum, and the pressures inside the anus and rectum are measured.

An Ode to Insurance Companies

Well, well, well, what more can I tell?

Rory couldn't poop, so we were thrown through a loop.

And our little prize spent the summer with Rady.

They couldn't find a cause for her tiny bowel's pause,

But sent home a bill that would make most men shrill,

And now Aetna's price tag grows into a Lady.

A Halloween Tradition

Halloween 2003. Reese was just 13 months old. Christine and I had our limited Halloween supplies out of the closet, most of which consisted of a Mad Scientist cosutume I'd worn in college. Just for fun, we threw it onto Reese's head and snapped a few photos. This picture remains as one of my favorite photo's of my son's early years. The best part about the picture was how his 13-month old head almost completely filled out the adult wig.

Flash forward to Halloween 2004. We were now the proud parents of two - one toddler, and one 9-month old. Halloween box was out of the closet again, and Riley joined the 'Mad Scientist' club. Note how the 9-month-old's head almost fills the entire wig.

Halloween 2011. Seven more years have passed. The Mad Scientist wig, still clinging to life, continues to be a Halloween staple in our household. Our newest edition has some room to grow before filling out that wig, but she wasn't quite 5 months old yet, so it really isn't a fair comparison.   

The once proud Mad Scientist wig isn't doing so good these days. It's previously perky quaff is looking a little wilted and frayed. But it still makes us laugh when donned by a baby. I wonder if it will last until our first grandchild is born?

September was a Good Month for Rory

I know, its been more than three weeks since the last entry here. Summer is officially over. September has come and gone, and today marks the begining of October. School is in full force, and I'm back into the swing of things at work, up to my eyebrows in new and catchup work.

You may recall that when we left the hospital, we had the threat of an ileostomy hanging over Rory's head. The docs had pretty much told us that if Rory didn't respond to the treatment at home and ended up back in the hospital, they'd just go ahead and do an ileostomy. So there were many ups and downs those first few weeks, and each squirm, grunt, or fuss (typical behavior for any other baby) brought anguish and concern. I like to look at trends. I literally do, just about every single day. My career revolves around performance trends for water treatment systems. I recognize that you can not look at a single data point to assess a situation, you have to look at the trend of many data points. Christine was not comforted by my analogies of our daughter's health to a water treatment plant. I was not completely convinced either, because while Rory's overall trend looked good to me, I also knew she could crash in an instant.

But September turned out to be a good month for Rory. During the monthly visit to the pediatric surgeon, he reported that he was very pleased with Rory's progress and response to the dilations at home. So much so, that even if she landed back in the hospital, he would not do the ileostomy. They'll just decompress here, and send us home to keep doing what we're doing. I cannot tell you how much stress that relieved.

We also had a visit with the GI Doc. She was also pleased with how Rory is doing. So much so, that she said we could back off the liquid gold formula. She recommended a different formula. Not your standard off-the-shelf stuff yet, but another 'special' formula that's about half the cost of the previous formula. Its more like, liquid silver. We mix that with breast milk. And maybe that's the best part. I don't think I reported this previously, but we could not actually mix the liquid gold with breast milk. Rory would literally gag and spit it out when we tried that. To feed her half liquid gold and half breast milk, we were heating up two separate bottles for every feed - every three hours. Now we can use a single bottle. It's the little things...

Rory had an appointment with the physical therapist too! She was indeed a busy girl this month. Christine was too. And they said Rory looked pretty good. The mild stretching exercises, and holding her the opposite way when feeding, were doing the trick to correct her stiff neck syndrome. Now we're just working on ensuring she has a full range of motion. That means a lot of tummy time, and giving here things to look at, at specific positions so she cranes hear head many directions.

September was a good month for Rory. Let's see what October holds in store for her.

Through the Eyes of Babes

I know, that's not the exact saying, but its appropriate in this case. My son's first creative writing project is due tomorrow for his new school. He had to write a few paragraphs on what he did this summer. You remember that assignment, don't you? Here's the text from his story, aptly titled "My Summer":

"I spent most of my summer with my best friend Brody because my sister Rory was in the hospital. Brody and I did many fun things together. Some of the things we did were, went to the beach, we also visited the aquarium and zoo. My favorite thing we did together was go to Seaworld.

Sea world was so much fun! We saw a dolphin show, a clown show and the Shamu show. There were tide pools and I got to touch a starfish and feel the gross sticky skin of a sea cucumber. My favorite thing we did was to ride on Atlantis. The ride was awesome because it was scary and thats what made it fun. When it was time to leave, we got to see fireworks that the park does before they close. I had a great summer and the best part was when my sister came home from the hospital."

The second half of the project was to create diorama, collage, mobile, or some other means of illustrating the story. When Reese suggested that he wanted to do a mobile like those that Rory is so fond of, Dad joked we could even motorize it. Apparently at 9 years old, kids still think their parents can do anything. I guess I'm not ready to let go of that perception just yet, so check out the video to see how it turned out.

Video quality isn't so great, but those are pictures of all the fun things he did hanging off the mobile. And at the top are fireworks. It was a family collaboration to be sure.

Latest and not so Greatest

Not much new to report these days. The information comes in slower and slower. We have extreme ups and downs, sometimes weekly, sometimes daily. As we continue to fumble through this mess, we're not sure where the end of the road lies. But we prod along, and self correct volumes, ratios, and feeds as we see fit in order to prevent Rory from distending to such a point that we end up back in the hospital. So far, so good. But our patience runs thin, and our hopeful expectations run low.

At Rory's last pediatrician visit, they told us she is showing signs of Left Sternocleidomastoid. "Oh no, what now!?!?!" you surely cried in outrage and frustration. Left SCM simply means that she has a tight neck muscle on her left side which causes her to tilt her head to the left. In severe cases (which she is not), a helmet-like contraption is required, along with daily sessions of stretching activities. Two separate stretches, five times a day, three reps each.

Instead of all that, we need to do the stretches twice daily, and see a physical therapist. Frequency unknown at this point. Because of this preferential tilt, she can also start to develop a mis-shapen skull from keeping her head in one position while on her back.

What next?

Around the World in Rory Days

Thank you, Anonymous Irish, for your comment in the post below. I'm sorry to hear about your daughter and wish our situation offered more conclusive results for others to draw upon. Admittedly, our docs are at a bit of a loss, but one thing the surgeon has said all along is that they don't want Rory's issue to be carried into her toddler years, where she would eventually start asking us why we have to rectally dilate her to make her go poop. We are very much still in the process of trying to figure it all out, but it is clear that if this process stalls, it will turn surgical. My memory wanes the longer we're out of the hospital, but I seem to recall what seemed like two diffent surgeries that were being considered. The first was simply the pull-through procedure similar to the Hirschsprung's 'easier' corrective surgery. The second was what seemed more like cutting an o-ring and sewing it back together, but instead of a piece or rubber, the o-ring is the sphincter muscle.

At this point, all I can offer with certainty is that Anonymous Irish is right to be investigating this on their own. I just wish this blog was not near the top of the google list, because it demonstrates how little information is available out there. But this advice is for anyone with a loved one in the hospital for any reason: do not assume that your doctors are completely familiar with, or knowledgable about your particular ailment. Question them at every turn, with questions based in fact and research. Make them think about their decisions and the long term ramifications of those decisions. And if you don't like what you're hearing, speak up about it. We have been very pleased with the doctor's we've had on our case, their communication, and their forthrightness about their limited knowledge. But I suspect our continued involvement and repeated badgering didn't hurt our situation either. If you are not pleased with your doctor, then it may be time to get a new doctor.

"I thought you'd be taller"

Do you know me? Do I seem shorter to you these days? The title here is a paraphrase from a totally underappreciated movie, 'Escape from New York', where the protagonist's reputation proceeds him so much, people assume he is larger than life. That has nothing to do with my current state of mind, but it makes for a catchy title.

When I pose the rhetorical question of whether I seem shorter to you, I'm not talking about physical stature. I'm talking about patience. I have found that when information really matters, when I need to cut through the superficial BS and niceties of daily interactions, I have no time to mince words. You too would find that when your newborn daughter's long term heath and welfare is on the line, there is no room for spared feelings, miscommunications, or misinterpretations. There is no room for hesitation in the decision making process. And it would seem that once you've crossed this metaphysical barrier, once you've crossed this line between casual conversation and critical communication, there's no turning back. So maybe now is a good time to apologize for any sharp quips, or quick tempered remarks you may have observed or recieved from me in recent weeks. In some ways, I fear the Eric you once knew no longer exists. But in other ways, I embrace it.

GI Doc, a Real American Hero

Today, we met with a nurse practioner from the Gastrointestinal (GI) doctor's office. She seemed nice, and already up to speed on Rory's situation, which added to my comfort level regarding this GI group. Plus, they'll fight for freedom wherever there's trouble, so that's a bonus. Inspection of Rory revealed that all looks good so far. The past week at home with her parents alone on staff does not appear to have worsened her condition.

http://www.youtube.com/watch?v=gc8mVs2H4Vc&feature=youtube_gdata_player

We've got the direction we were looking for. GI Doc is having us mix MBM (that's mother's breast milk) with the liquid gold formula. For now, it'll be a mix of 30 ml MBM and 60 ml liquid gold. We'll increase the percentage of MBM every few days, as well as increase the total volume gradually until we eventually reach 120 ml. This is great news, not only because of the cost of that formula, but because we are up to our ears in MBM, quite literally. Needless to say, I did not own a chest freezer before the NICU visit.

The specific instructions are a little more loosey-goosey, allowing some room for our own interpretation of Rory's response and correction on the fly. GI Doc said we don't have to be pedantic about feeding her every three hours during the night. We can let her sleep until she wakes on her own and feed her then.

We'll be proceeding with the manometry study. Think 'drug mule', but instead of heroine, the balloon is filled with pressurized air. For my colleagues in the membrane industry, a better analogy would be to think about a pressure decay test for a hollow fiber membrane. If you didn't get that second reference, fret not, it probably just means you don't appreciate the Dilbert comic strip either (ie: Engi-nerd humor).

Currently awaiting referral to CHOC, Children's Hospital Orange County. They are the regional experts in applying and interpreting the manometry test for infants, but we need to get approval from the insurance company because CHOC is out of network. But the idea here is that if Rory's status goes south quickly, the docs would like to have that piece of information already in our back pocket, and not have to delay to get it. If we are forced into making a quick decision about an ileostomy, at least we can then make a more informed decision with this knowledge already in hand. And hopefully we won't even need these results.

Other than that, not much more to report. Rory continues to do well. We are less freaked out by every squirm, grunt, or wince that Rory makes. We continue to monitor her diligently, and each day pray that she is closer to outgrowing this issue all on her own.

I'm not a moron, but I play one in real life.

Did I ever mention I have a college degree? Really, I do. And my degree is in a pretty hard major from a fairly prestigous school. I'm not bragging here, but after reading some of these posts, you may have come to the conclusion that I'm a moron. We all have ridiculous stories to tell, most just never bother to write them down, let alone post them on the world wide web for all to critique. Based on the last sentence, maybe I am a moron.

Plaaaaayyyy Ball!!!!!

I've got a backlog of stuff that occurred while we were at the NICU, so here's a fun story. One Saturday, some generous person donated Padre tickets to the RMH. We took the opportunity of free tickets to get out and go see a baseball game. It was a much needed break, and gave us a chance to spend some time with our other two kids on a family expedition. Even though Rady Children's hospital is only 12 minutes from Petco Park by car, we opted to take public transit down to the game just so the kids could ride the trolley. What great parents we are, right?

Now, I'd never ridden the San Diego trolley before, but I have used electronic ticket machines elsewhere in the world, such as on the BART in Northern California, and even the City trains in both Brisbane and Sydney, Australia.  I've even purchased movie tickets from a machine, and use ATM's quite regularly with much success. In fact, I fancy myself quite computer and gadget literate.

So I'm not exactly sure what happened here, it seems easy enough to purchase four, one-day fares on the trolley. But somewhere between putting my card in the slot, and pulling out my tickets, I purchased one, four-day fare. Had I known that nowhere between the points of origin and destination would anyone actually check my tickets, I might have just left it at that. But I figured I'd better do the right thing here since my kids were staring at me asking why I was getting so angry. I went ahead and purchased three one-day fares to go with my one four-day fare. We got some free tickets to the Padres game, and the San Diego MTS made a little extra profit off of it. Oh yeah, and the Padres lost 6-10 to the Colorado Rockies.

"Hey kids, let's go bust some drunks!"

I'm no proponent of drunk driving, but should I have to explain what DWI means to my eight year old just because we stopped in to Rite-Aid for an ice cream cone?

Where's the Homicide Department's Meat Wagon so I'll be forced to explain how messed up the world really is. I don't want my kids to grow up naive, but I sure don't want them to grow up before their time either. Thanks for the ice cream and the life lessons, Rite-Aid.

A Vote of Confidence

My wife is on the phone right now. Literally, right now as I type this. When asked if she has a hard time leaving Rory to go run errands, she responds "no, Eric can take ver...[pause] Eric can take care of her". How about you finish that first part? Allow me, "Eric can take very good care of her". Thanks for the vote of confidence, honey.

[UPDATE] Christine claims her pause and rework of the thought was unintentional and purely coincidental. A natural artifact of the discourse between two human beings. Hmmm, sounds suspect.

Feisty Blog Commenters!

I applaud your passion. But let's all take a deep breath here, before the comments section on this blog becomes like those following the Yahoo! News stories. Seriously, have you read the comments at the end of those stories, especially political stories? They are downright offensive. Dont those people have anything to do all day? But admittedly, they are often more entertaining than the story itself.

So keep it clean, people. Calm down. I don't want to have to start moderating your comments now. Those that know me, know I don't like moderation in anything I do. Wait, no, that didn't come out right...

I'm Getting Desperate

I tried feigning Narcolepsy tonight but Christine wasn't having it. Something about not having it for the past 17 years. Who is she, Sherlock Holmes? Anyway, a word of advice for you younger, single guys out there. Start faking this sleeping disorder now, it will come in handy later. And not just when you have to give late night feeds to the baby. You can have an 'episode' right in the middle of your wife telling you about her day, or better yet, when she's asking you to take out the trash. The possibilities are limitless! But start early and stick with it or it will never pan out. That right there is good, solid marital advice - on the house.

Hello? Hellllllooooooooo!?!?!?!

"Are you still there? Is it over? Is this blog finished?"

C'mon people, I wouldn't leave you hanging like Jerry Seinfeld did with that sorry excuse for a series finale. I've just been busy. It turns out having a 9 week old baby at home requires a lot of time! Where's our stable of nurses with around-the-clock coverage? Where's the team of NICU doctors and pediatric surgeons, ready to invoice me diagnose Rory's every hiccup or burp at a moment's notice? Apparently, they don't come home with you!

I'm not complaining. And the invoice crack above was just a joke. It's great to be home...with Rory...intact. But it does require a lot of work.

Can I digress here for a moment and tell you what an absolute advocate I have become for breast feeding? I mean, I'm not going to get all militant about it, but I get it. I know the advantages it offers. I know the benefits of breast feeding from when our first two kids were born. You've probably seen the same studies I have documenting this fact - dads get something like 90% more sleep when moms breastfeed. So keep up the good work, ladies. It's apparently good for the baby too...wink, wink.

But none of that for us right now. We're still on the gold-standard equivalent of baby formula. Did I mention previously that we anticipated using six cans per month? We went through the first can in 4 days. By my math, $45/can x 7.5 cans/month = chapter 13. Financial ruin and I get to share in the late night feed schedule? I thought the US legal system prevented this type of double jeopardy.

Rory had an appointment with her pediatrician on Monday. She also had an appointment with the surgeon today. We were supposed to see the GI on Friday, but they bumped us until next Tuesday. The surgeon was pleased with Rory's response to the dilations, as well as the several unscheduled stools she's had since leaving the hospital. But he's only keeping an ear to the situation in the event he gets called up to the plate. The GI will be the primary investigator from this point forward, so we eagerly await our first meeting with her.

Bright Light, Brighter Future.

When we hit street level, the cloudy sunlight was too much for her eyes after 46 days under the fluorescents of the NICU. Little Rory squinted like a Chilean miner emerging from the depths of the earth after 17 days underground, sans Oakley eyewear. Where's our endorsement deal, Oakley?