Transitions

Our time in 3 west while less than a week seemed much longer due to Gabriel's roommates. Our first two days Gabriel shared a room with 3 other infants, one of whom was inconsolable. She would cry for 30 minutes, pass out from exhaustion for an hour and repeat. We asked for a quieter room but the unit was at capacity. After 48 hours of this cycle we moved to a two person room. "Be careful what you ask for." Yep, our new roommate was a pre-teen who would sporadically erupt into cacophonous wailing. Listening to the scene on the other side of the curtain filled us with angst due to this negative affect upon Gabriel's convalescence tempered with pity toward the boy's woeful pleading to be free of pain, all while his parents attempted to reassuringly quiet him. The next morning he was gone and by afternoon a grown man was in the next bed. A nurse mentioned he was only 17, interesting thing about a children's hospital; pre-birth to pre-adulthood. His family were NOT quiet people.

Sunday my folks and the kids departed Half Moon Bay and stopped by to see us on their way home.  They parked the RV in the Stanford Mall parking lot. After a visit to see Gabriel I walked them back to the RV. I wanted a few photos of the kids but only had the Droid phone Norma (Amaya's Mom) had provided us (since Earle doesn't have his own phone).

I had no idea how to take photos with the droid so I handed it to Powell and asked him to see what he could do. Within a minute he snapped a close-up of Bella.

After another 5 minutes or so my Dad and I figured out how to use the camera.

Everything was good until I stood up, Isabella did not want to let me go and even Powell's constant up-beat demeanor was diminished. We all parted with tears on our cheeks. Powell commented "These pictures will be good for you to remember us by."

The national mortality rate for hypoplast babies between these first two procedures (the Norwood and the Glenn) is 20%. Stanford's average has been 7% and they have recently instituted a home health monitoring program which has decreased their mortality rate close to 0. The program involves sending us home with a pulse oximeter, scale and charting forms. We will monitor him at home and report back bi-weekly (or when needed if something doesn't look correct) to one contact person. Everything is assumed to be cardiac until confirmed otherwise. This is THE place to be for little Gabriel.

Prior to leaving 3 west parents are taught and demonstrate multiple skills to prepare them for providing care to their infants at home. One of these skills is the placement of an NG (nasogastric) tube. An NG tube is a small catheter that enters the nostril and runs down the esophagus to the stomach providing a pathway for feeds and medicines. 26 cm of tube to get from Gabriel's nose to his stomach. My first placement went pretty well (if you're not Gabriel, he's getting sick of being probed and prodded).

 Dad's handiwork (the tube)

 As stated earlier in this blog, a real shining point has been the opportunity to get to know my cousin Amaya.  I've known her parents for years but she was always been somewhere else on the globe when I was in Idaho and vice versa. Beth and I have both come to love her as a person and are constantly awestruck by her level of compassion and helpfulness. However, after recent events I am doubtful about some of her decision making abilities. The following photo evidence corroborates my suspicions. Amaya showed up with sandwiches, chips, samoans & Bacon Soda.

A few years ago a Jack in the Box commercial closed with a customer pleading "Won't someone please make a bacon latte'? That was humor folks, bacon flavored beverages are not supposed to actually exist. Don't get me wrong, I love my breakfast meats; bacon, sausage (in all forms), ham and bacon (I really like that one) as much as Nick Offerman does. Offerman is the actor that plays Ron Swanson on the sitcom Parks and Recreation. Beth really likes The Office (but sorely misses Michael Scott).  I'll watch it with her but could take it or leave it. The positive side effect of watching The Office with her is the sitcom I do find entertaining Parks and Recreation, airs on the same network in the same time frame. I particularly enjoy the sardonic wit of the Swanson character. I also subscribe to Fine Wood Working (FWW) magazine (I've made a couple of wooden things over the years). Several months ago FWW (issue 222) featured a detailed account of Nick Offerman's wood working prowess and in the interview he also disclosed his appreciation for swine related breakfast fare (OMG we might separated twins!). FWW even created an on-line link so viewers could get a tour of Nick Offerman's woodshop.

Bacon though is not a suitable beverage flavor enhancer. As my facial expression does attest.

 Amaya is in agreement.

Maybe we can overlook one flawed judgmental error in the sake of avant grade culinary  experimentation. After all while in Grand Rapids, MI a few years ago I did try a bacon infused bourbon limoncello cocktail (I know I just lost all decision making credibility as well) it was not good, really not good. 

 Gabriel receiving a neurological exam from Bernardo, a kind and intelligent Dr in the NICU. Bernardo is from Mexico City, speaks 4 languages and is conducting a study which evaluates the correlation of oxygenation to brain electrical activity in babies undergoing the Norwood procedure (just your average Stanford Fellow). Gabriel pioneered Bernardo's research as the first infant to take part in the study. For those not familiar with a neurological study (also referred to as a "neuro") it is basically an assessment of muscle tone and symmetry to determine if any neurological deficits exist which will not allow the body to function as it should. In the field EMT's and paramedics conduct neuros on stroke victims and as a diver we conducted these to rule out cerebral arterial gas embolisms on divers with rapid  ascent profiles. The field sobriety test administered by police officers is a similar type of exam.

 Gabriel's first trip leaving the hospital!

 Gabriel's 1st time outside!

 Gabriel's 1st car ride!

Gabriel's 1st time exiting the hospital's parking lot!

Gabriel's 1st time in the guest cottage!

Powell's classmates from the Boise Cooperative Preschool (BCP) created a quilt for Gabriel. Actually Amy (a classmates Mom) sewed the quilt but each of the children transferred their handprint onto the fabric. I don't know if there is any stronger faith or love than that of a child. 

Methinks there is a lot of magic and joy and magic and love and magic here.

Gabriel evaluates a class photo of his benefactors,

 and the accompanying signed certificate of authenticity.

 He enjoyed relaxing on his new blanket

 but I loved watching all those little hands guard and protect him while he slept.

 We're trying to bulk him up and have to show weight gain by our outpatient appointment this Friday. If he loses weight he'll be re-admitted and Idaho and the kids will be pushed farther away. He's keeping down most of his feedings but a few find their way back up necessitating occasional sponge baths (still can't immerse his incisions so full baths are out).

 Gabriel is not the bath fan his brother is.

 Powell loved the apartment table and when he was here loved being the one to put it up.

After meals the single leg is folded back into the table base,

the top lowered,

  

 and the chairs stowed inside the base. OK, so maybe Powell isn't the only person who thinks it is a cool design, its been a couple of decades since I dwelt in an apartment.

Amaya found us a portable crib on the Stanford faculty and employee network. We've converted the cottage into a Gabriel support room.

I live with a conscienceless monster! This will be even tougher if I lose Beth to incarceration (we were not the consumer of the crib, having received it 2nd hand).

Gabriel's "gaga face" or what he looks like when Lady Gaga comes on the playlist.

Amaya's Grandmother Lena on the left and her little sister, my Grandmother Pearl on the right. These ladies epitomize grace, love, strength and gentleness. They are amazing women from another age but their qualities and character persist in both Norma and Amaya. I can't think of any higher praise than this comparison.

We're movin on up!

To the TOP! To a deeee-luxe apartment in the sky!

So maybe it's a big bed in Three West, one floor up from the ICU, but it's a big move up.  I think I could have chronicled most of this experience with quotations from 70's pop culture, the 70's had its share of adversity and struggle and joy and hope. For those of you who don't understand the title of this post or the first few lines try researching Lenny Kravitz' mother (the apostrophe police {I know who you are} would come down on me whether I added the "s" or not).

 Losing the wrist IV!

 Wrapped and prepped for the big move upstairs.

 Big bed, itty bitty baby.

 Where are we goin'?

"It was sooo much work getting here Mom, two floors, long hallways...

 I need some rest.

 but I finally triumphed!"

 What the?  Car seat study. Gabriel will probably start school in Junior High rather than kindergarten after all the Stanford studies he's completed prior to 1 month of age.

 Removing the picc line from his ankle. Last of the IV's!

 Mom had to dress him up!

 Getting strapped in for a "swallow study."  He's given a bottle of barium to drink while being x-rayed, the occupational therapist can then watch exactly where the barium goes, either esophagus (stomach=good) or trachea (lungs=bad).

 Tough to photograph an x-ray screen.

Mouth and throat parts. He passed! Stuff went down the right pipe.

Gabriel's "zipper" the only stitches left are a few where the chest tubes were. Those will be removed on Monday.  Beth looks at the stitches and gets sad, her baby that started life looking so perfect is all marred up. I try and remind her that without those marks this little baby wouldn't be here. He should not have lived, those are beauty marks that remind us how lucky we are he completed so many studies at Stanford and how fortunate we are to be here at this fabulous hospital where they do leave little beauty marks on his body. Originally we were supposed to be discharged today (Saturday) but Gabriel lost a little weight Thursday night so we've been extended to Monday (they want to show 3 days of weight gain). Beth and I are splitting bedside duties. I pull 8pm to 4am, she wakes early and relieves me so I can go home and sleep to about 10am. We're looking forward to bringing Gabriel home for many reasons. We are also looking forward to seeing the kids tomorrow! Grandpa and Grandma will stop in Palo Alto on their way home to the beautiful gem state so we can say goodbye to our two other kids. Keep them all in your prayers and thoughts as they travel home.

guest cottage

The following link details our hosts here in Palo Alto. John and Danielle Mewes  have graciously allowed us and many other families to reside in their guest cottage. We are so grateful. It makes me think what kind of a world this would be if everyone acted in such a kind giving manner. Not only do they provide a place for us to live without cost, they also allow us to use their internet service (therefore they would be the first official sponsors of the Swopeworld blog). They also keep the kitchen stocked with all the cooking and eating utensils and spices and other essentials needed to prepare and eat meals. The bath is also stocked, the bed is comfy and they provide a TV with dvd's!  The space is great for Beth and I. The kids have spent most of their time with Grandma and Grandpa and are currently camping again, this time by the ocean in Half Moon Bay. They've spent several days and nights in the cottage with us and while it's been snug we've made it work. Amaya provided us both a foam mattress and an air mattress. Isabella preferred the former and Powell the latter, it is so nice when things work out! Similar to sleeping in the motorhome or on the sailboat, things are tight and you have to move with care and put things up after using them. It is actually nice to go to bed as a family, although I sleep less than the rest so I wake up a few hours early, still works out as I can write and read and think.

The Rollercoaster (literally and metaphorically)

Friday was good. We closed the day with dinner at my Cousin Amaya's; Beth and I and the kids and my folks. Amaya cooked some great spaghetti and we brought dessert from Mayfield's Bakery (probably worth a trip to Palo Alto just to sample their pastries, their croissants are the best and they make one croissant stuffed with ham and gruyere cheese!) I picked up a chocolate torte embellished with raspberries.

Saturday afternoon I took the kids to Santa Cruz to hang out with Rich while Kelli was in her flamenco workshop. Beth spent the time with Gabriel.

 The kids asked what a "boardwalk" was for the last 24 hours. We parked on the pier and after their first glimpse they new it was good!

 I feel bad posting this for my Northern (AK, ID, MN & other non-bikini and board short wearing February fun zones) friends and family.

 A cool wooden roller coaster, Powell salivated but he was about a foot shy so we rode the dragon roller coaster which still bounced Dad around all over the place.

 Uncle Rich and Bella.

 Dad and Powell on the spinning around thing. Rich and Bella wanted no part of it.

 In the process of flipping over, Powell's shrill scream was reported in San Francisco.

 Isabella exiting the bumper cars.

 Isabella and Rich are in there somewhere.

On the tilt-a-whirl with Powell. I think he might have enjoyed the day.

 Leaving the beach and heading back to the pier.

 The kids and Uncle Bunny.

 I'm tellin ya, people have to make stuff!

 Dad and Uncle Rich won! Although I'm not sure if he went back to the hotel and napped.

 Driving home, I wouldn't be able to move my neck for a week if I fell asleep like this.

Early Sunday morning my folks stopped by to see Gabriel and called with a glowing report. The chest tube had been removed, he was looking and doing great! With three days of good news we settled into a lazy morning and didn't rush up to see him. I went for a run and was amused when Janis Joplin popped onto the random shuffle of my iPod singing "Oh Lord won't you buy me a Mercedes Benz" as I ran past driveway after driveway filled with a Mercedes or similarly priced automobile. We eased the kids out of pajamas and arrived at the hospital in high spirits. These were dashed immediately after Gabriel's RN advised us he was experiencing tachycardia every few minutes and had started about 15 minutes prior to our arrival. Tachycardia is an elevated heart rate, Gabriel's resting rate is about 150 beats per minute (bpm). His rate was shooting up to over 210 bpm for a couple of minutes at a time and would then settle back to his normal rate. Dr Roth advised us this could be caused by decreased electrolytes particularly potassium and magnesium. Gabriel was running low on these minerals due to the lasix (diuretic, which means you pee a lot) he needed to be on to get rid of all the fluids which had accumulated due to surgery and the healing process. This stuff is all so interrelated and the Dr.s and nurses are trying to find the perfect balance of med.s that equate to the perfect solution for the particular patient. Dr Roth also mentioned the tachycaria could be caused by an extra nerve bridging the ventricle and atrium so that on occasion a circular firing effect could occur thus resulting in tachycardia.  He also cited a study written by a colleague of his working at Boston Children's Hospital which showed that infants who had experienced atrial trauma (having your atrial septum scooped out qualifies as trauma) were prone to experience tachycardia. He also discussed the fact that there may be clotting around the shunt (goretext tube going from ventricle to atrium).   The candor and forthrightness of the staff is fantastic but at times too much information definitely adds to ones anxiety level. During rounds they also discussed his AV (tricuspid) valve and believe it may be mechanical (a problem with the valve itself) and not just caused by back pressure. This means it will need repaired at some point. The hope is to control it as best as possible with med.s and repair it during his second surgery at 3-4 months of age. The other option (if it can't be controlled with med.s) is to reopen his chest and fix the valve now. Beth commented, "We're never going home." We spent the rest of the day at his bedside and due to the RA line and chest tube removals were able to hold the little guy which I think did more to console us than him- or maybe it was an even match. I think I mentioned earlier though that this place will slap the self-pity out of you with the force of a 2x4 to the head. The baby girl across from Gabriel not only has cardiac issues but has been going through morphine withdrawals for the past several days.  The baby boy beside Gabriel coded (went into cardiac arrest, heart stopped beating) last Friday. They performed CPR and he's been on a heart and lung machine since and is comatosely sedated. We're just looking at tachycardia (which could take us to cardiac arrest) and a faulty valve (which could do the same) but we aren't there. This past week we had started to plan our trip back home. A couple of days in the CVICU. a week or two in 3 west, a week at the cottage, home by mid-March! We're moving back to thinking in 24 hour increments, carpe diem baby ("baby" here used colloquially and not in any sarcastic form) cause that may be it .

 He doesn't look bad and while his heart rate is racing over 200 his face remains calm, without the EKG you'd never know anything was wrong. The Dr.s had the pharmacy load  an IV with electrolytes especially Mg & K. He is also placed on propanolol used to treat hypertension, anxiety & panic. His tachycardic episodes ebbed throughout the afternoon and the last occurred about 3:15 pm. Evidently it was primarily electrolyte related. So the evening improved and we were able to hold him for the afternoon and evening.

 Dad looks tired.

 Mom looks good.

 We are blessed to meet and love our little boy.

 Dad giving him a bath and washing his hair.

 I enjoyed giving the bath a lot more than Gabriel enjoyed receiving it.

Monday morning rounds were positive! No tachycardia since the previous afternoon, everything was looking good meaning the balance of the med.s was right on! I asked about the tricuspid valve, if it was still looking mechanical. The medical team believed that it was more hydraulically caused and had not witnessed it prolapse on the recent echocardiogram. The Nurses all commented on what a happy baby Gabriel is. If he's awake he'll just lay there and look around. Dr. Roth stated the team should focus on 3 West as a goal no later than Thursday and preferably Wednesday. I told him that sounded great and we'd let them take the big picture but we'd just focus on 24 hours out.

 Happy Grandmother Lois holding Gabriel.

 Tuesday evening and all is well.

Cousin Amaya and Gabriel, (I think she's a natural).