Thursday, February 28, 2013

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.

1 comment:

Amaya Odiaga said...

Bacon soda…100% success. Goal to bring something to the hospital SO out of the ordinary that for a moment, it would offer a comic relief from the tubes, the beeps, the medicine, the loud noisy neighbors.
Additionally, it made the blog post! There is a specialty store by my house that I ran into before heading to the hospital with the sandwiches for dinner. I saw the bacon soda, and was intrigued. Taste tested, and never need to try that again!!

Our world is an amazing place, full of lots of ups and downs, but there is almost always something good in all situations if you know how to look. This is a trait that both Earle and I learned from our two wonderful grandmothers Lena and Pearl. I have a new “extended family” that has become very dear to me, through this very scary adventure of fixing sweet Baby Gabriel’s heart. Thank you Earle for the highest compliment, to be compared with the two amazing women in my family line…my mom and grandmother.