An account of the Swope family's travels through life and Earle's observations following a series of unforeseen events. Earle (Dad) experienced a near death experience and subsequent PTSD in 2008. In 2013 their 3rd child Gabriel was born with HLHS (Hypoplastic Left Heart Syndrome) which means no left ventricle and 3 open heart surgeries. In spite of or because of, we realize how blessed and rich are our lives and how wonderful this human experience.
It's been about 15 years since I first met my buddy Scotty, he had (and still has) a custom license plate that read PAROTHD. I wondered what the hell a "pair-oth-ed" was and finally asked him. Scotty had a good laugh and explained it was "Parrot Head" I still didn't get it. So he broke it down even further and explained that parrot heads and fruitcakes are Jimmy Buffett fans. Fan might be way too well tempered a word to describe the sun longing revelers that flock to Buffett concerts.
With no Jimmy Buffett concert anywhere in the area and Gabriel not being able to fly to Jamaica or the Keys, Beth and I decided to head for Half Moon Bay. We needed a major change of attitude and thought the Pacific might do it. Our last contact with the scheduler had depleted what little hope we had left "we don't want you headed back to Idaho so hopefully we'll get you in next Friday." Beth and I have been around long enough to read between the lines, that's a carrot to keep us here one more week. This is a tough position as a parent, losing control due to responsible advocacy. After first becoming aware of Gabriel's situation we wanted him in the best place possible since we could not do anything other than place him in the very best hands. So we did and he is and we have relinquished all other control. Our schedule, our son's life, our other children's schedule, Grandparents life; all are in the hands of the Doctors at Lucile Packard.
Tired of the parking lot we drove 30 minutes to the coast and changed our front yard.
One of us stays in the motorhome while the other can walk around and enjoy the area a bit, but at least the one in the motorhome has a good view. On Sunday we were both inside the motorhome when Beth squealed delightedly "dolphins!" I grabbed the camera and walked down the jetty to find a good vantage point. I tried to get a decent shot but the lense wasn't up to the occasion so I sat on the jetty and watched the dolphins jump and play. I enjoyed the sun and listened to island themed music wafting across the air from a bar about a 1/4 mile away. About 20 minutes passed before I realized this was a stolen reverie. Beth had spotted the dolphins and I literally stole her moment in the sun. I returned to the motorhome and asked if she'd like to switch, although now the dolphins were gone.
Half Moon Bay is a beautiful place, if I were to design the perfect Earle ocean place this would be a finalist. A beautiful bay, nice beach, surf spot, jetty and harbor.
Jetties are cool. When I was a kid my sister and I used to spend hours and hours searching the Seward, Alaska jetty for treasures. We never came back empty handed, sometimes we found a pocket knife, one time my sister found a Japanese glass float, often it was some sort of tackle, but always a reward. Our goal was always to make it to the end of the jetty but rain and seas dictated how far we got. I can't remember what my parents were doing or what we told them about our whereabouts, maybe we were all a bit more naive, maybe more oblivious, maybe each of us more selfish and none wanted to ruin their good thing and so no one volunteered nor asked. I don't know, but jetties have always been cool to me. Our motorhome is parked almost directly in line with the jetty, the Pacific as a front yard is a pretty good view.
The jetty shelters about a 1/4 of the bay in a well protected harbor split into two 3 sections; mooring buoys, the commercial boats and the private boats. Unfortunately for me the private boat ramp is locked and accessible only to boat owners and their guests. I love to walk docks and peer and gawk and lust and drool and critique boats, especially those with masts erupting from their topsides. All boats inspire romantic dreams of adventure but sailboats are the pinups of floating vessels.
The domes and antennas on the hilltop decrease the aesthetics of the place but thankfully the fog obscures them most mornings and evenings.
South of the jetty is the beach and nice swells that break into great surfing waves.
and in the midst of it all is our home, which seems a little bleak without the other two members of our family.
When the wind has subsided we've taken Gabriel out for a little fresh air.
We found Powell's toddler hat in a drawer, so Gabriel decided to work it a bit.
Does this hat make my chin look fat?
The ice plants are in bloom and cover the dunes with pink and yellow flowers. Seemed like a nice spot to photograph Gabriel and try to grasp onto those little good moments. It is hard to focus on the positive because so much is beyond our control.
We started collecting a few odds and ends to send home to the kids in a care package, salt water taffy, cheese chips... yep. This snack is like designed for Powell.
Monday morning I took a walk along the beach to find some seashells for Isabella. She has numerous collections; animal bones, rocks, but her most significant and most often accessed is her shell collection. She routinely takes the shells out and spreads them throughout her room. She knows the variety and name of each shell, where it was found or if purchased or given then where it was purchased or who gifted the shell. Each time though she reorganizes them in slightly different variation; location the shells came from or maybe found versus purchased or by color or by species, it's always interesting because her classification changes each time, no boring Linnaeus taxonomy here. Makes me think instead of the Akan gold weights used for centuries in West Africa. Anyways, I needed to find some shells for her. I headed down the beach, head down and focused. Several hundred meters down the beach and I wasn't finding anything, a few broken sand dollars and some ragged mussel shells. This was going to be a bust. Then I spotted the tiniest sand dollar...
and recognized this as another metaphor for living, focus on the large expanse of beach searching and moving or slow down and enjoy the little details right at your feet. We have Gabriel now, we hope he outlives us but the only definitive way to be sure is rather extreme for Beth and I, although I do know that if suicide is an option drowning really isn't too bad of a way to go. I do think we'll shelve terminal options for the time being though. This has probably been the hardest on Beth. We all have normal expectations, most of us expect to grow into adulthood, meet someone to mate with, mate, rear young, observe their mating habits and young rearing, die. For the most part in that order, some people like to repeat some of the steps (maybe "like" would be inaccurate). With Gabriel though everything is indeterminate. He has 3 open heart surgeries he has to make it through and then we'll see how his heart is as a teenager. We might outlive him and it sucks and it sucks knowing this!
A little yappy dog came running towards me trailing his little old lady. I didn't want to talk or pet either of them so I turned around and headed back. Other than the sand dollar I hadn't found much. I kept looking for more shells and walked up the beach away from the water about 5 meters or so. I was almost back where I had started and was looking for a good path to climb back over the jetty rocks to the top when I spotted a whelk and a snail and what looked like a small nautilus and a tiny purple full mussel shell (I initially mistook for a coquina). A little reinforcement to the lesson I had just been taught. Rather than initially taking my time and really paying attention to my surroundings I had focused on blasting down the beach, sure that farther Down There was the good stuff. Situational awareness, I always try and observe where fire exits are in busy restaurants and theaters, whenever I'm riding a bike I look into a driver's eyes to make sure he saw me, but on a beach... still applies. A cool example and multi-layered lessons addressing situational awareness are available in the movie The Perfect Getaway. I would put it in my top 10 films (along with High Fidelity of course) a blog interview with actor Steve Zahn sheds a little insight. I probably wouldn't watch this one with the kids on family date night. All of this points to us focusing on what we have around us and with us, enjoying the moment and the people you're sharing it with.
Baby water, "made for mixing" "with minerals added for taste" I'm reading these incongruous claims and thinking this is nuts. They charge twice the amount for water because it is especially for babies. The taste is negated if you're mixing it with formula and it's really irrelevant if you're feeding it to our baby via a tube (and therefore right past the taste buds) and "made for mixing" what do they add or is it simply that that is what water is? The great solvent! I'm thinking about how we are constantly bombarded with advertising and spun things just to pry a little more money from our hands and that people fall for this crap all the time, as I'm walking to the motorhome with two gallons Gerber Pure water.
With at least several days until Friday but with realistically over a week (we knew we weren't getting in this Friday) we thought maybe we should try a different venue. The beach was amazing but babies don't like the wind and it was too damp most of the time to bring Gabriel outside. We thought the redwoods would (NPI= no pun intended) be awesome but 5-6 hours away seemed a bit too far, Yosemite though was only 180 miles away, that seemed reasonable. 180 miles on Idaho roads would be 3 hours give or take a little, California though pushes it up around 5 hours with traffic, hindsight speaking as we would not have ventured if we would have known hours were to be spent creeping along at 20(-)mph. Why live in this? So we travelled through and discovered Valero fuel stations, probably the most predatory of any gas station I have ever seen. When located in an area in which they are surrounded by other stations they are the cheapest by 10 cents but when located alone or either as the last or first in a series of stations (relevant by traveller perspective) they are almost always the most expensive. Why does the dollar and money and thus power drive so many people to victimize other people so significantly? This isn't simply about corporations and capitalists it is also about they who profess to support the common people; about our entertainers who are no less covetous of our dollar as are the Corporate mongerers. Name a hollywood celeb, your favorite musician, athlete, talk show or news host that ain't siphoning every penny possible into one of their beach houses or mtn. "cabins." These folks are the latest wolves and don't even realize what they are or what they're dining on; just flesh, just the manifestation of human flesh, that's all you're eating Oprah. Bon Appettite! Please do not think I am waxing political for in the last few years I have realized there is no "political" in this country, we are all in a case of constant distraction in which we are "politically" pitted against one another. We all want the same crap; we want to work and earn and be proud of our living, we want a little place to call our own, we want our kids to be proud of us and want them to invite us in for career day. We want to watch our kids hit in the park, move in chess club or draw in art class. We want another parent to give us the occasional nod. We don't want a lot, but we need a little.
The last bit of the trip Gabriel started getting fussy, we checked his temperature and found he was running a low grade fever around 100 degrees. The campsites in the park were full so we found a site (with cell coverage) about 20 miles out of the park. The next morning Gabriel woke with a congested cough and we got scared. His oxygen saturation has been in the high 70's and if anything happens to his lungs his sats will decrease further. We monitored him and headed back for Palo Alto, chastising ourselves for being so far away. They were able to take us into the Cardiology Center and found his lungs were clear and he was looking OK other than the cough (no more fever). But.... surgery would be postponed until this cold runs it's course, 3-4 weeks away. On the positive side we can go home and see our kids and hand deliver our quirky care package, but... we need to stick around for several days to make sure he doesn't get any worse and goes downhill somewhere in the middle of Nevada.
So we tucked him in and he slept OK and hopefully tomorrow we can go home and see the kids and then come back here in a few weeks.
Last Saturday we left Isabella & Powell in Idaho with Earle's parents Gary and Lois, transforming them into parents of young children once again. Powell should dig that one, Transformer Grandparents!
We decided to take the motorhome this time as while we were well taken care of by the housing department (last go round) the ambiguity of where we would be sleeping the next week and the many moves significantly increased our stress levels. Beth thought we should also bring the car but I thought a few bicycles, the stroller and extra flip flops would be adequate, (and imposing on Cousin Amaya when we did need auto type transportation).
Back in the land of many suspension bridges.
And many cars to fill those bridges. We arrived Sunday and Monday met with the Cardiologist who told us the Friday surgery appointment might be delayed if Gabriel's catheter lab numbers were not adequate. Those numbers included inner pressure readings which indicate the function and delivery of the blood to the lungs and throughout the heart. This delay could be 2-4 weeks to allow his body, (especially his lungs) more time to mature so he would be better prepared for the Glenn procedure.
Beth looking at Gabriel looking at his echocardigram.
The Glenn procedure consists of opening Gabriel's chest back up, cutting his sternum open again to access his heart. Dr Reddy will then remove Gabriel's superior vena cava from his right atrium (which is actually now just the right side of one big atrium since they removed the atrial septum during the Norwood procedure) and reconnect the SVC to the pulmonary artery. This will allow deoxygented blood from the upper body to passively return directly to the lungs, thereby making his cardio-pulmonary system more efficient (still much less than the rest of us but much better for him).
After meeting with multiple folks on Monday we strollered Gabriel back to the parking lot and the motorhome. Along the way I took Beth past a few Stanford sights I had discovered on our last excursion. I figured she would like the large cacti garden...
I was right of course!
The cactus blooms and the humming birds feeding from them were lovely but served to remind us that our little flower girl Isabella isn't with us. She would love to see cactus, blooms and birds. Fortunately Grandma has been gardening and planting flowers with her.
This little guy made us think of our little guy Powell and how he would probably be chasing the darting lizards as fast as he could move and pile into cactus as he was focusing on pursuit of the reptile.
So with our parental lamentations offsetting we wandered a bit farther to the Stanford Mausoleum; Mom and Dad and Junior.
The rear is as cool as the front but with slightly different sphinx.
These sentinels guard the front.
While their feminine counterparts protect the rear.
A short distance, several hundred meters away is this beautiful sculpture surrounded by a wrought iron fence, a tribute to some guy whose name I forgot. Once again demonstrating that art is much more memorable than dead people. It (art) is definitely more attractive than dead people (most art). I've seen a lot of both and it's really true. Especially dead people that have been laying around undiscovered in their home for a few weeks, not pretty and they smell bad. While not all art is pretty most of it does not smell of rotting, decaying flesh.
Earle's urban mobile vehicle, some people might refer to as a bicycle with a milk crate, and yes Logan that is a Trader Joe's bag full of Trader Joe's food things.
8am on Tuesday getting signed in for the cath lab.
After handing Gabriel over to the cath team we moved into the waiting room and channeled good thoughts and our inner "Dooley".
I think they call it PACU? Post-op. Gabriel was coming out of anaesthetic and was pretty grumbly but everything in his heart looked great and his numbers were all good! Getting the catheters into his femoral veins and arteries had been quite the challenge and so he had 2-3 puncture sites on either side of his groin. He had also been intubated so his throat was raw all of which added up to some justifiable grumpiness. He was hit with a few opiates but that magic baby pain elixir- tylenol was delayed for about 2 hours in it's delivery from the pharmacy. Beth threatened a few times to return to the motorhome for our supply.
While in the PACU a PA (physician's assistant) from the surgical team let
us know that all the numbers were great and surgery was getting pushed
up to Wednesday (tomorrow) afternoon! She ran through the procedure and
all the potentially negative and dire consequences while Beth was
consoling a crying baby.
A few hours after the cath lab we were moved to 3 west, Gabriel received his Tylenol and began to rest. I took the stroller back to the motorhome as we had planned on being discharged the following day and either (a) stick with the initial surgery date of Friday or (b) defer the surgery for 2-4 weeks. Either way we would be discharged in the morning and either hang out for a couple of days or return to Idaho for several weeks, we would need the stroller at the hospital to transport Gabriel. Instead they had thrown (c) at us and Gabriel would stay in the hospital, undergo surgery in the afternoon, move to the CVICU and then to 3 west; no stroller needed for well over a week. While I was out Beth texted "No surgery for 7-10 days" so now we were at plan (d) all of which had occurred in about 24 hours. This was less predictable than spring weather in Idaho! The Cardiologist had decided it would be beneficial to give Gabriel some more time since he was barely 3 months old and although his numbers looked good she thought we should wait a bit more and she would "split" the difference with us since we were from out of state. So now we have a week or so to kill with a baby we can't really take in public. We'll come up with some kind of a plan. Just overjoyed things are looking good from the cath lab and he's convalescing from that procedure- tubes stuck in the blood vessels of your groin sending cameras an sensors into heart can ruin any ones day.
To close on a positive note we did get to have some great Mexican food (Palo Alto Sol) for dinner with Amaya (which she delivered to Gabriel's room)!