Thursday, January 31, 2013

Gabriel has arrived!


Gabriel Earle Swope was born yesterday at 
6:19 pm pacific time, 8 lb. 4 oz. and 20" long! This was Mom's view of him as they halted for about 5 seconds on their way to the NICU. I was able to follow and observe the team in action. These people do their job well! Beth is pretty beat up but recovering, trying to let her rest.



It was 1230am before she was finally able to see and touch her little guy. I'm so proud of both of them! He's received a lot of attention in less than 24 hours; 2 echocardiograms, an ultrasound of his head and abdomen, x-rays, blood tests, lactic acid tests and more. The Cardiologists have confirmed that he still has HLHS and will need surgery. We knew there would be a lot of highs and lows and we're already dealing with them. He was born and looked good and cried well. Today though he's struggling; respiratory rates bouncing from the high 30's to 140's and oxygen saturations dipping to 78%. He's been placed on a CPAP (ventilator) and is receiving a blood transfusion. I spoke with a cardiologist fellow this afternoon, she said they're trying to determine if this is due to pulmonary reasons (which the CPAP could help) or cardiac. If cardiac it is due to the foramen oval closing (good for SCUBA divers bad for broken hearted babies, OMG I just wrote the next platinum country song!) This means they would have to perform a procedure to keep the atrial septum open. We're rooting for no atrial septal problems.


Gabriel sporting his fancy CPAP headgear and IV's and EKG and other stuff. The kid's already a gear geek.


Friday, January 25, 2013

T minus 1 week

Whatever that means, I'm assuming the T is for time as in the final time or deadline minus the balance remaining, I don't know it justs sounds cool. Beth's final OB viist was Wednesday, everything is still looking good. The morning of the 30th she will be induced at Lucille Packard Childrens Hospital. No c-section! Because her pregnancy is going well and Gabriel is doing great in utero she can deliver v-naturally. This is awesome since that was a major cause of anxiety to Beth (part of it might have originated with her friends stating " They pull your parts out and set them on the table beside you"). So Gabriel will be delivered and then taken to neo-natology where they will start a few IV's, one of whihc will be in his belly button utilizing the existing umbilical venous and arterial pathways. He will be living in the NICU and receiving a constant drip of med.s which will help keep the ductis arteriosis open (artery operating in utero but closing shortly after delivery) this will allow him to exchange oxygen which is a good thing for us mammalian types. The surgery will occur somewhere in the first week or so depending on Gabriel and the condition of the other babies in the hospital. The strategy is to allow him to live and strengthen a bit after delivery, overcoming the trauma of being born. Once he has adapted to our environment he will go in for open heart surgery but could be bumped by a higher priority patient, he is not the top priority! That is good! We'll take any little thing we can grasp. The days have been dragging as we wait to meet Gabriel. We've been filling our days pretty well. Monday we hiked up to "the dish" about a 3 1/2 mile hike with some decent elevation gain. Beth did great and told me not to post a photo of her so instead I posted a photo of Isabella, Powell and Gabriel (not my fault Beth got in Gabriel's way, maybe a little bit of my fault).
A bright spot of this entire ordeal is getting to meet my cousin Amaya. She works at Stanford as the athletic dept. coordinator and has been a wonderful connection to family. Tuesday she watched the kids and allowed Beth and I a night out at a nice little Italian restaurant where i tried their variation on steak tartare with thin sliced kobe beef, capers and pickled onions... lovely. The kids and I have also been swimming a bit in the outdoor pool, granted we're the only ones but it still beats Idaho weather. Powell mentioned the other day that we "were not just on bacation we are also on a rescue mission for Gabriel." Since then we've been able to deal with other little thrills of a transient life, onebeing the kif\ds discovering a neat little pill under the chair cushion. The wonderous powers of the internet determined it was phenazopyridine hydrochloride 95mg, used to treat interstitial cystitis. Fortunatley the kids simply brought it to my attention knowing this was not a good thing.

Unfortunatley we didn't have the same luck when Powell, bored and in the bathroom started playing with a disposable razor. He walked out with the end of his finger bleeding and told Beth "It did nothing when I went down but when I moved it sideways it cut me." I thought I might have been stopping the bleeding and transporting Beth simultaneously (another reason she's not a fireman, the blood thing and they fart too much).

Wednesday, January 16, 2013

San Francisco

Earle and Powell after some dim sum
Grant Street
Cannibal
Fire Engine 36 and fire Boat 1- awesome firehouse doors
Beautiful Chinese Lanterns
Isabella and Powell
Having Gabriel's name painted

Earle's beach birthday

San Gregorio State Beach, a cool beach piled with driftwood. Cool eroded sandstone rock/cliffs. The kids climbed most of them.
Plant writing.
The beach is covered with drift wood, therefore many people use the driftwood to build shelters/fort. I decided to start a seperate blog dealing with my thoughts on art and the human need to construct and build- for now it's simply earledswope.blogspot...
No wind was blowing but this tree attests to the abundance of wind on other days.

Monday, January 7, 2013

address

Several of you have asked about a mailing address. Earle or Beth Swope C/O Ronald McDonald House 520 Sandhill Rd. Palo Alto, CA 94304 Phone # (till Feb 1) 650-289-9139

New Place

The apartment is a nice place but it is still weird living somewhere else not being on vacation. Does that make sense? I think Powell summed it up when he said, "This place feels empty, not like home." Don't get me wrong the apartment is great and we're fortunate to be here and happy that Gabriel stands his best shot here in Palo Alto but we still would like to be in Boise. Although we did see you received a gob of snow while I'm walking around in a t-shirt. Like anything, you can choose where and how to place your focal emphasis.
The lobby
A nice big living room (the couch doubles as Isabella's bed) and dining area
Our neigbors; that first one is a Ferrari.
Yesterday poor Powell caught some nasty bug, food poisoning, bacteria or something and could not keep a thing down. We kept him pumped full of fluids and stomach friendly food and watched it come up a couple of hours later. We're not used to seeing him not moving fast during the day. Fortunatley today he's doing OK, moving fast!

Friday, January 4, 2013

90+% survivability

Today we met with the Surgeon and the Neonatologist and are so reassured to be here. The Surgeon is held in high regard and his specialty is neonate surgery (seems obvious but hey). In fact kids are flown to him from around the country when other medical centers feel the child is too small to operate on. He examined the echograms and stated that this first procedure now has a 90 plus percent survivability rate. After this surgery we'll stay here in Stanford for a month or so post-operative, go home to Idaho and return here at the 4 month mark. The Dr said if we make it to the 2nd surgery (no complications or infections at home) we're pretty much set, so things are sounding good. Still a long road but what a great place to be, with wonderfully talented people looking after Beth and Gabriel. Which brings us to the Neonatologist- the director of our teams of physicians. She is a warm, caring person that spoke with us at length today, toured us through the facilities we will be using and attempted to sway Isabella to attend Stanford. Side note- Isabella has wanted to be either an anthropologist or paleontologist since she was 5. A couple of years ago psycho Dad looked up the best schools in the nation for graduate work in those fields and Berkeley was the top west coast school. So today is a good day and we are out of the motel and into a wonderful apartment.

Wednesday, January 2, 2013

Rose Bowl Champions

After discovering we would deliver and undergo surgical procedures at Stanford we became huge Cardinal fans and wanted them to succeed in all endeavours. Prepping to depart for a multi-month excursion is taxing under normal circumstances, fortunatley Beth tackled most of the details; suspending trash service, heater turned down to 45 degrees, animals at various friends houses (although I did have to carry the fish tank and find sitters for both the cat and dog), she also covered plant sitters (who the hell would think of plants?) and then she covered all of the schoolwork stuff at Powell's pre-school and spoke with Bella's principal, teacher and counselor (all while packing a little broked up little guy in her belly). My primary concern was to take time off from work, fortunatley as a firefighter I can bank sick leave and vacation leave, on the down side I had used a lot of my vacation leave attending school. I put a request out to the department informing the guys as to my situation and requesting a few trades to help extend my time, in the fire service we are fortunate to be able to work for one another and "trade" time. As long as the seat in the fire engine is filled with someone of your same capabilities we are allowed to swap time with each other. My request for trades was intended to find half a dozen guys of similar classification that would work with for me while I needed time off therfore extending my sick and vacation leave if conditions necessitated, guys whom I would pay back and work for them when things quited on the home front. Intead I ended up on the receiving end of what firefighters do and why people love them. They act! I recieved over 5 weeks of donated vacation leave which does not include the 3 months covered by guys working shifts for me, most of them with no intentions of me paying them back. That's over 4 motnhs of paid leave completley covered by my Brothers... that's some humbling, loving stuff. In addition to all our friends looking after the house, animals and plants, many of you provided us with gift cards and cash to help us live our remote life, thank all of you so much! We are so humbled and blessed to have so many wonderful friends. On Dec. 28th we set off (we were going to leave on the 27th but my folks' neighbors and our friends Rob and Alice mentioned they had family in Winnemuca and slide offs were all over (was that redundant?) and we should hold off a day (which gave me time to take care of the crap i was supposed to do the previous day). My Father and Mother decided they needed to follow us (by which I mean drive in front of at an erratic rate of speed) to make sure we arrived safely (by which I mean they needed to get out of the cold and see friends in Yuma) which we did (by which I mean I love them very much for making it look like they were travelling with us for any other means). For the last week we have been residing at a Hotel (they call it an "Inn" and they mean well) in Mtn. View, about a 250 sq. ft. room, 1/4 of which is jacuzzi tub. I would comment on the irony but it would be lost on Powell who loves at least one tub bath a day.
We closed out 2012 with a trip to the beach and enjoyed a brisk day on the California coast, I was able to watch a sea lion surf and the kids had a cold, wet, fun day. Powell had received a science kit (well 2 of them) and we had to do the mentos/soda experiment...
I love the fact he has both feet off the ground... it is solo exciting!
The kids hit a few beaches, collected some rocks and left a few carvings.
My favorite part was the sexy chick on the beach (which I guess would be why we are here...)
The rest of our time has been spent orienting ourselves to the area and spending ungodly amounts of cash feeding ourselves at Whole Foods. Tonight I thought I would get us an awesome economical (I mentioned I was a naive romantic) dinner and filled a WF trough bucket with an asian, italian and middle eastern selection finished with brownies... yea 45 bucks later. So we're figuring things out. Today Beth was a trooper and so were the kids. They were all awesome, 11 hours in the hospital. Oh yeah, this is my fav. so far... we have to unplug the fridge to use the microwave as they both use descending plugs so only one will fit at a time.
Fortunatley tomorrow we are supposed to move into an apt. for the next month, at the birth of the baby we have to move out and can hopefully then move into the Ronald McDonald House. Congratulations Stanford on an awesome Rose Bowl!

Waiting for Gabriel 2

We thought a lot and tried to think of the many different scenarios, would he hate us for going through with the procedure if it caused some developmental problem? Teenagers hate their parents for invented nonsensical reasons, what if you actually gave a kid a reason? What if your decision to give them the potential to live is selfishly motivated? Beth was our primary existentialist, I was the romantic procrastinator, "we'll deal with that when that bridge floats upon our cross". Beth took a blood test to ensure there were no chromosomal deficits as that combined with cardiac and lung issues would be  insurmountable. No deficits! We returned to the pediatric cardiologist for the 3rd echocardiogram, as usual the little guy was damn (Papa H. says to always substitute "damn" for "very") tough for the Dr to get rock solid imagery. We told the Dr we wanted to go through with the interventions, he suggested Stanford. The good news though was that the atrial defect (oclusion of the patent foramen ovale {well informed scuba divers know what I'm talking about}) was no longer occurring!!! Instead of two severe heart defects, he only had one! Amazing what a different perspective will do, we were now so happy our baby had half a heart! The balance of the month was spent prepping to move to Palo Alto for the next several months, if things went routinely we would be there for 2 months (1 month on either side of the delivery). If things went horribly wrong we would be home in just over a month with no baby. If things didn't go routinely we could be there for 5-6 months. We decided to plan on 3 months. We also named him Gabriel.

Tuesday, January 1, 2013

Waiting for Gabriel

The beginning of a new year! We have big hopes for the little guy Beth is carrying around. This crazy ride really started last January; Beth decided to return to work as an elementary school teacher jumping through all the hoops to update her resume and complete the latest battery of tests required by the state. She submitted applications, interviewed and was offered a 2nd grade position when we discovered she was pregnant. That was a big monkey wrench thrown into the Swope familia werks but we tried to take it in as positive a stride as possible. You see our original plan was for Beth to remain home until Isabella was in school full time as a 1st grader. In the interim our son Powell was born, we didn't quite make it until he was in 1st, but he was close (final year of preschool). I applied for and was accepted to grad school at BSU. So when we discovered that Beth was gestating another Swopling we tried to view it as a positive. Maybe this was a sign that she wasn't due to return to work just yet (although as Beth has said. "It would have been a much simpler message if I had just not been offered a job.") So we viewed it in the light that her staying home a few more years would ease family scheduling a bit. In August, Bella started the 3rd grade, Powell returned to preschool and I began the MFA program in visual art. Life was crazy busy and we were still somewhat dreading adding an infant to this mix but had finally resigned ourselves to the inevitability of Beth's growing abdomen. In September we received a 2x4 smack in the face of "be grateful cause things can get worse." After the 5 month ultra sound we discovered that not only were we having a boy but also that "He has a problem with his heart, it doesn't look right and you'll need to see a pediatric cardiologist." That's an emotional IED!! A week later the pediatric cardiologist said it looked like there was something going on with the baby's heart but he was not getting good imagery and he wanted to see us back in a couple of weeks. We hoped and prayed the problem was the imagery, we so wanted to believe everyone was in error. Two weeks later though we discovered our boy had half a heart: the diagnosis was hypoplastic left heart syndrome or HLHS a rare congenital condition in which the left ventricle is absent or significantly underdeveloped. The fix is a series of 3 operations to basically re-plumb the heart so the right ventricle will do the work of both. These procedures take place; a few days after birth, at 4 months and at 3-4 years. The procedures are becoming more commonplace but operating on a neo-nate's heart is still a high risk intervention. The pediatric cardiologist also said it looked like an atrial septal defect was in process which would decrease lung development in utero. So... heart and lung problems. We were pretty despondent after that visit. The Dr was great though and talked with us at length regarding options... all two of them. The options were either to pursue the interventions at an out of state hospital or deliver in Boise and receive comfort care and allow the baby to die. This is the kind of decision making neither of us thought we would ever be faced with, determining whether our child should possibly live- due to severe interventions or die. I asked the Dr what direction most people took and was surprised that most people elected to remain in Boise and provide comfort care. I didn't understand at first until I thought more about it and realized most people don't have the option to even consider making that decision. Most people cannot take months off of work and travel and live out of state. While I might be a financial moron I am fortunate enough to support my family as a Boise firefighter which affords us options not available in most other careers. We had a lot to think about.