What a Long, Strange Trip It’s Been

July 15, 2012 at 9:15 pm 3 comments

Yeah, I know, I’m a rare breed.  Not only do I know all the words from the latest Taylor Swift album, but I can also rattle off the lyrics to several Grateful Dead songs. (As well as a pretty mean rendition of “Little Bunny Foo-Foo” complete with hand gestures.)  I figure that with all that we have gone through over the last several weeks the title seemed fitting.  Oh, and speaking of the Grateful Dead, did I ever tell you that Ma Self gave me a tie-dye set for college graduation. She also gave me a lava lamp. Go figure.

But yeah, the last several weeks post surgery have definitely had their share of challenges.  Upon leaving LPCH we were immediately presented with the fact that in Chicco’s quest to create the perfect car seat they clearly neglected to do any testing on babies just heading home after heart surgery.  As a result getting Rex home safely was not an enjoyable experience.   A trip that normally takes us about two hours, took closer to four with numerous stops, many a tear (from both of us), a double dose of Children’s Tylenol (him not me), and (most importantly) two aborted trips to Panera.  By the time I pulled in our driveway I was ready to pour myself a can of “Simpler Times” but we were clean out so instead I settled for a Sprite. (Yeah, I live a wild and crazy life, I know) I think it is safe to say that our drive home was about as harrowing, if not more, as the drive I took last winter whereby I lost my left antler in a blizzard.  (Reminds me I need to reorder some replacements this season.) Oh, and for what it’s worth, those CD’s that advertise soothing music that will lull your crying baby to sleep in the car, well, they only work on the parents.

Rex’s first trip to Tahoe. He probably won’t remember it.

While the drive was one thing, Rex’s first night home was another. Dane was out of town, which I was initially fine with because my overconfident self was pretty sure Rex was going to sleep through the night after all that he had been through.  I, of course, was so totally wrong and finally came to grips with that at about four in the morning when Rex was still in prime party mode.  After a few panicked calls back to the Stanford CVICU thinking that our Rexy had to be going through some sort of morphine withdrawal or something to have so much energy, we were finally able to fall asleep around eight.  By 10AM I was at our Pediatricians office learning that Rex was perfectly fine but had managed to contract a bit of a stomach bug.  How this was possible coming from such a sterile environment at LPCH I do not know, but I have to blame Chuck because, well, why not.

The next few weeks did not see much of an improvement on the sleep front.  As a result we quickly came to grips with the fact that we were stuck in some sort of arrested development, as Rex had seemingly reverted back to a newborn once again.  (To all you parents out there who have told me to cherish this time because “it goes by so quickly”, you are welcome to come over to our place at around two in the morning to get your newborn fix, I’m happy to share)  It’s not like I’m keeping score or anything but I am pretty confident that I have not gotten more than three consecutive hours of sleep since February — and that’s on a good night.  And no, Rex doesn’t believe in naps.  Can someone please explain to me how a three-month-old baby doesn’t seem to need as much sleep as a grown adult? Argh.

The lack of sleep is taking its toll on mom and dad but has clearly not affected Rex’s ability to heal himself.  He is pushing twelve pounds, successfully passing the Maltese across the street and quickly closing in on Floyd.  His stitches are out and while he will have a significant scar we figure it will make for good “show and tell” later in life.  In other good news we are happy to report that Rex’s right testicle finally dropped as well – I’m sure he’ll love reading about this when he is older. 🙂

Rex and I continue to build our social life around repeated visits to the pediatrician, the cardiologist, and heart surgeon.  Luckily every time I take him in for a visit we are happy to learn that he does not have meningitis, malaria, swine flu or whatever other random disease we, as Internet doctors, have diagnosed him with.  Even though our Pediatrician probably thinks we are nuts, he has recommended that we put an offer down on his neighbor’s house so he can’t think too poorly of us. Although I’m not sure he would want us that close to him though given our track record.

Gone fishin’!

As for milestones, well, screw milestones, we’ve been busy concentrating on other stuff.  Rex, in fact, has determined that “milestones” are for “full termers”.  Conformists (as he calls them) who always feel the need to play by the rules and will surely go on to become Accountants and live in the suburbs with 2.5 kids and a dog.  Bo-ring.   Preemies (like himself) operate on their own timeline (quite literally).  Rebels from day one (or negative week seven in his case) they live life in an unconventional manner; wearing white after Labor Day and eating cereal with water instead of milk. (Honestly Dane, who does that?!?) Their distinctiveness has them destined for greatness as they are undeniably in good company with the likes of both Sir Winston Churchill and Anna Pavlova to name a few.  I mean honestly, that being said, there is no reason that Rex couldn’t be the next great leader of the United Kingdom (born and raised in California) or a famous Russian ballerina (who isn’t really Russian).  Clearly the world is his oyster.

We have managed to reach one milestone however that will probably surprise you. I doubt there are many full-termers or preemies out there who can check this one off their list but just last week Rex started talking, yes talking. It just so happened that during one of his (very) early morning kick sessions (when most of you were still sound asleep) that suddenly and without warning Rex came right out and spoke to me — and no, not in the way that my three imaginary friends (Sticky, Phantom and Lamar) speak to me, but with a real honest to goodness word.   Not something run of the mill like “ma-ma” or “da-da” like the millions of other kids out there but instead it was something much more um, random and complex.

I know it’s hard to tell here but trust me, this is him saying “owl”.

Yes, in the wee hours just before sunrise Rex looked at me through those big blue eyes (the only thing other than his big toe that we allegedly have in common), gave me a toothless grin and cooed (if that is what you want to call it) the word “owl” at me (pronounced “owwwwwww-wAHHHHH!”).  Take that Facebook friends; while you are busy bragging about the fact that your baby is “sleeping through the night” and/or already “rolling over” like a champ my baby (who is of course not doing any of those things) is talking away!  Not only is he saying “owl”, but if I point to his stuffed owl toy (which may actually be a chicken, not sure) and ask him what the owl says, Rex usually (okay, at least once) kicks his legs and shrieks “Hoo! Hoo!” (Pronounced “oooooooooooooo!!!!!!!ooooooo!”).  This gift for gab makes me think that we undoubtedly have ourselves a gifted preemie on our hands.  In fact it was all so impressive to me that I decided to make him the next Youtube sensation by recording him “talking”.  Unfortunately he got all camera shy on me and so after about twenty minutes of filming him sucking on “Big Orange” while I jingled the owl-chicken in front of him, I decided to throw in the towel. One can only take so much of the jingly-jangly owl-chicken.  Oh well, next time.

Anyway, the only downside (or rather upside) of all this talking was the fact that Rex gave himself a case of laryngitis — amazingly it is actually possible for a baby to lose his voice. I can’t say we didn’t enjoy every minute of it.  While at first we were kinda worried, it was hard to complain when all of a sudden that (many times a night) hungry cry, was now reduced to a pathetic whisper. If only there was a way to bottle up a case of the laryngitis and feed it to him every once and awhile we’d be all set.  While neither of us ever want our Rexy to suffer those three days of muffled cries were heavenly.

It’s now been six weeks and Rex is officially healed from his heart surgery. He is back in the gym working on his “tummy time” and as of yesterday had his fourth bath (ever). His days usually involve, waking up, eating and then his three stages of play (described here):

Stage One: Don’t touch me, I’m kickin’
Stage Two:
Mom. MOOMMMMMM!!!! C’mere and entertain me dammit. I’m bored!
Stage Three:
Feed me. No, no, no, no play with me. No, don’t touch me! Okay, cuddle me. Okay, don’t. (and so on and so forth until you finally get him to sleep)
Cycle Repeat.
Eh, at least it is some form of a schedule.

And so in conclusion I would be remiss to mention that tomorrow is our one-year wedding anniversary. (Is the first year diamonds? I can’t remember…) Instead of waxing eloquent on Facebook I will do it here.  While our first year surely had it’s fair share of trials and tribulations I feel confident that if we can survive a NICU, a CVICU and “3 West” we can survive anything. I feel lucky to have my best friend by my side through this crazy thing called life.

What a long, strange trip it’s been, huh? (Hey, nothin’ says romance like the Grateful Dead, right?)


Entry filed under: Rex. Tags: .

Our Nurse, Chuck. It is crunch time, and we need your help…

3 Comments Add your own

  • 1. Paul Self  |  July 16, 2012 at 12:25 pm

    You said it all when you talked about how lucky you are to have your best friend by your side through this progression of events with Rex. Happy anniversary and I am so happy that you and Dane found each other.

    Your posting was again very entertaining. Rex will really enjoy these when he gets older (as long as he is able to control who you show them to…).

    Love, Dad

  • 2. Michael & Kyla  |  July 16, 2012 at 10:35 pm

    Happy Anniversary Dane & Angela! Can’t believe this time last year we were playing flip cup, drinkin’ simpler times, & gettin jiggy-wit-it on the dancefloor. And now we both have little ones keeping us up all night (progress!) Don’t worry Angela… Even some of us full-termers aren’t rolling or sleeping through the night yet 😉 The fact that you maintain such an awesome sense of humor while going thru all this is a testament to how strong you both are…and that gravity eventually gets everyone’s testicles…we love you guys; hang in there!

  • 3. Darlene Painter  |  July 22, 2012 at 11:40 am

    Dane and Angela,

    I have been out of town for the last week, but I wanted to send belated wedding anniversary wishes for you. If you are still holding on to each other after what you have been through the last few months, you should have a long and loving marriage ahead. I am so glad to hear Rex is doing better. Now maybe you can get on with the business of growing the cutest little guy on the planet (my grandchildren excluded!). You have been through a lot, but never out of my prayers. Health and Happiness to you both, and may the next year be a little less exciting and a bit more restful.

    Aunt Darlene


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