Tuesday, August 30, 2011

August 30, 2011: Twas the Night Before My Birthday...


Well, here comes... the last year of my thirties!  August 31 is the big day.  I remember entering a pretty grueling personal development  training course in 2002, just into my thirties, wanting to become the man in my thirties I hoped I could be.

Boy, I sure had NO IDEA what kind of ride I was in for!

Got married
Became a homeowner
Went back to school
Moved to California
Had Ali
Started my own company
Had Bella
Wrote a book
Wrote this blog
Closed my company
Lost Bella
Joined PUCK
Started my company again
Had Julian


What do you think I might cram into the last year? ;-)

Rather than posting a comment, would you drop a dollar in the hat and click on the Chip In box on the right?  More than anything, I just wish I could transfer my birthday to Bella, so she could have it.  Since I can't do that, my next wish is to give other EB kids as many birthdays as possible.  I believe in my heart the fastest way to this is through continuing to support University of Minnesota.  They are the closest to the finish line.  Will you continue to help me support them?  I know email is free, blogs are free, facebook birthday wishes are free.  Think if you were going to send an old fashioned paper birthday card in the mail.  You might spend 2-3 bucks on the card and postage.  How about save a tree and a kid at the same time?  LOL.  Alright.  Enough.  Thank all of you that have contributed and will contribute.  Much gratitude.

Also, keep your fingers crossed as tomorrow night we find out if PUCK gets a FREE charity event hosted by the Anaheim White House.  They are giving away 12 charity luncheons in 1212, and we are in the running!   We have to attend a cocktail reception at the restaurant tomorrow night where they will announce the winners, so I'm taking my mom with me since Ang has to still stay put with the J-Man.  It's  roughly a $4,000 value.  The facility will provide staff, facility, and meal for free for your event so your charity can make the much needed profit on the event and not have it eaten by those items.  I hope that me telling them in advance that tomorrow's announcement event is on my birthday helps our cause!  LOL.

Life at home with Julian is sweet.  He sleeps, eats, pees, and poops like a champ.  He's as cute as a button, and though considered big at birth, still seems like such a little peanut!  Momma is positively glowing. Ali is burning through all kinds of energy at school.  Nanny is cooking up a storm!  Like I said, life is good.

God night.

Ah, and last but not least, Bella giving her famous scowl!

Sunday, August 28, 2011

August 28, 2011: Life with Julian...


Life is good.

Julian is sweet.

He eats.

He sleeps.

He poops.

He pees.

He cries.

He has gas.

Ali loves him to pieces.

Nanny is in town helping.

Ang is recovering like a champ.

I return to work tomorrow not as tired as I feared.

Pictures tell the story best, so enjoy.

Life is good.

God night.

And your daily dose of Bella... well it's a family shot...

Friday, August 26, 2011

August 25, 2011: Ali's First Day of School...



A rite of passage.  (Two in one week!)

As we walked to our neighborhood school this morning, kids and parents were filling the sidewalks like a pilgrimage or entrance to a sporting event or rock concert.  I could here the national geographic narrator in the background...

"At the same time every year, the humans can be found migrating to one of these local "schools" as they are called."

I felt like part of that species today.  I really felt like we were a part of something much bigger than ourselves.  While we have lived in our neighborhood for 6 years now, there is a part of us that doesn't fell totally connected to it.  We bought the condo we live in without any honest plans of still being in it 6 years later, but we bought in the summer of 2005, and like so many others, our home value has dropped roughly THIRTY FIVE percent.  So, here we still are, and as a result, we get to enjoy this moment in this community in this neighborhood with this school.  We may live in cookie cutter condo and housing track central, but it's hilly with trees, parks, and schools in almost every direction.  Life could be a lot worse.  There are 4 kids in our condo complex starting kindergarten today, and they are all in the same classroom!  Ali is one of them, and what is so funny is that we've only ever seen one of the other three kids, and they've lived here their whole lives as well!  That's condo living for ya.

Ali had breakfast, got dressed, and kissed mommy and Julian before heading off to school.  Ali was happy; her mommy and Julian were there to see her off.  Mommy was happy to be there as well. While she was bummed she couldn't walk with her to school, she thought of what a drag it would have been if she was still stuck in the hospital this morning knowing Ali was getting ready to go off to school without even seeing her.

If Julian had come on time (noon c-section on Monday) that would have most likely been the case.  The fact that he (and Bella I am convinced) kick-started her labor at 1:30 on Monday morning, causing us to deliver J-Man 8 hours earlier than planned, is what gave us the 8 hours to get out of the hospital last night instead of today.

As we walked to school, the feelings of excitement overcame both Ali and me.  Ali has been looking forward to going to this school since we played on the adjacent playground 3 years ago when she first asked, "Is that my school?"  I never really knew if she would go there for the above mentioned reasons, so now that we are still here, I got my answer today!

Ali met another shining socialite like herself while waiting in line.  Little Janice was just as outgoing and expressive as Ali, maybe even more so if that is even possible.  The two of them took to chatting like bees to honey.  Interestingly, it was the boys by and large that were having the highest amount of visible separation anxiety.  Still, we met a couple of nice boys in her class and some nice parents as well.

When I picked Ali up, her first comment about her new school was, "My teacher talked ALL DAY, and we didn't even get to play!"  Apparently, I hadn't properly set the right expectations as to how the day was going to go!  I tried to work on that during the walk home, but it was a little late.  Oh well, she'll get used to it!

The rest of the day was spent running errands, catching up on the mountain called my inbox, sleeping, and watching Arsenal come from behind in their exciting match yesterday (I LOVE my DVR).  Oh, yeah, there was this really beautiful woman upstairs taking care of this really cute little peanut, too! LOL.

Tomorrow, my mom arrives for a week to help out.  We can't wait to have her.  Ang's mom is going to come hang out while I go pick up my mom at the airport, so they will both get to hang with Julian together.  I am excited about this because I have pictures of both moms with Ali and  Bella and I remember those moments fondly, and look forward to creating more of them with Julian tomorrow.

Life can be really sweet sometimes, ya know?

God night.

As close as Ali could get for the first 12 days of Bella's life, with the rare exception where mommy could hold Bella for a few minutes.

Wednesday, August 24, 2011

August 24, 2011: We are Home...

Heading out the door!


Wow.  Dejavu.

I remember writing the same title for the post on our carepages site for Bella when she came home 12 days after being born in 2009.

Boy, has a lot gone down since that post.

I SWORE this was a coffee cup when I first looked at it...

Today, everything went right.  We convinced our nurse to get us rolling by 6pm so we could prep Ali for tomorrow... her first day of kindergarten.  We hit the road by 6:15.  Leaving the hospital with EVERYONE this time had that feeling of "this is how it is/was supposed to be."  We didn't leave St. Joe's with Bella when mommy discharged, and we didn't leave Minnesota with Bella, either.  This time, it seemed like "A happy ending/beginning."


Grandma was good enough to leave ahead of us, hit the pharmacy for Ang, and drop off several bags for us both yesterday and today to make our transition as easy as possible.  In the fridge was a yummy dish from Dina, our sister-in-law.  Angelique us already more comfortable here.  I sat in this same glider I am typing from with Bella, and this time around, it feels like parent heaven.  The difference in the stress and intensity of fear and anguish from last "first night home" and this one is like night and day.

The day wasn't without sadness, though.

Ali in her new classroom!

Fresh off of a trip with Ali to her school to meet her kindergarten teacher followed by a stop at Cherry On Top, we were waiting for the elevator.  Ali and I were happy and excited to get back to the room and  dig into frozen yogurt, when a guy I know's 9 year-old son walks off the elevator.  He was with his grandma, and asked, "Hey!  What are you doing here?" to which I explained that Ali's mommy just had a baby.  I asked him what he was doing here, and he replied, "My dad is upstairs in critical condition."

No 9 year-old boy should ever have to utter those words.

And yet, we live in the land of Is and not the land of Should, so he did.

I had seen his dad recently, and he looked really sick, so I guessed whatever it was that was hitting him so hard recently had knocked him down.  His dad is younger than I am.  I walked back to our room dazed.  I had walked through that hospital in pain before, and some of the sadness came flooding over me.  Ali picked up on it, and asked me what was wrong.  I told her how sad I was to hear about our friend being so sick.  I could tell she really didn't wanna go there, and she relied, "Well, just don't think about it!"  She wanted happy daddy back.  I wish it were that easy for me.

I walked into our room and explained to Ang and her mom the news.  My ukulele was in the room with me, and I tuned it up and explained I had to go to him, if only for a few minutes.  I found out his room number, and within a few minutes, I peered around the curtain at him and he did a complete double-take.  Like it was for his son, it was one of those, "What are YOU doing here?"  Not in a bad way, but just how-would-I-know-he-was-there kind of thing.  So, I sat down and he just looked at me and said, "I'm dyin', man."  His skin is green, and his eyes are completely yellow.  His liver is obviously shutting down on him and fast.  He makes the motion of drinking a bottle, and says, "It's my fault, bro.  I did it to myself."  I could see the guilt on his face.  I raced in to try and tell him about the disease and allergy models of addiction out there in order to try to ease his mental pain, but there was little I could offer with words.

So, out came the uke, and I told him what I did for a living, and that I was in the hospital for my kid's delivery and just happened to run into his kid in the elevator.  I asked him if I could play him some Hawaiian music to soothe him.  Now, this dude is a big, tatooed, blue collar tradesman, so I didn't know if it would be his thing or not, but I went for it.  At one point I looked up, and his eyes were closed and he had a peaceful almost slight grin on his face.  After one song, I could tell that was all we would do together.  His demeanor however had already shifted.  He thanked me for coming to see him, and I parted ways.

Part of me was bummed at myself.  Was I working during my vacation?  Just 6 days ago, I was playing for a man dying of the same condition at work.  Couldn't I just leave it alone?  I was worried my wife and her mom would be bummed at me for galavanting off to save someone I really only could call an acquaintance.  I even felt a little guilty as I was leaving our room saying that I simply wouldn't be able to forgive myself if I was literally THIS close by WITH an instrument and didn't do SOMETHING.  I think I usually come down on the side of going for it, whatever it is, because I never want to live with the "I wish I... or I shoulda..." As a result, I have had to deal with the occasional, "Maybe I shouldn't have..." or "I wish I didn't..." but hey, my personal philosophy is not without its faults, but at least I know where I stand.

Part of me was also completely grateful for the "coincidence" (I prefer providence as most of you know) of running into his son in the elevator.  The odds of that happening were so infinitesimal I can't even comprehend, and when things like that happen, I don't take them for granted and usually jump on them.  That hospital doesn't have music therapy, so I know no one else was ministering to him just like that on this afternoon, and I know he certainly wasn't expecting someone other than immediate family dropping in to see him in the middle of a Wednesday.  I think I gave him an unexpected surprise.  Maybe just a little ray of hope that things, opportunities, chances, life doesn't have to be a forgone conclusion.

Elsewhere, I have to tell you a crazy story about Ang getting a blister.  The big adhesive pad they dress her incision with left blisters the first time she had one on her for Ali.  Of course, we knew NOTHING about EB at the time.  This time, Ang was hypersensitive to this to the point that we got the nurse to bring Uni-Solve, the adhesive remover we used to use with Bella, to help get the bandage off this time.  Well, the nurse really hadn't had enough experience with this wipe and sure enough, gave Ang a blister on her abdomen!

So, while trolling for finger nail clippers tonight, I stumbled across a bunch of sterile needles left over from Bella.  Wouldn't you know it, a few minutes later, Ang and I are treating her blister the way we did Bella's, with our "Lasagna Technique."  First, Ang lanced the bugger, then drained it.  Then I put a layer of Desitin followed by a layer of aquaphor and a bandaid to finish it off.  A little while later, Ang commented how much better the blister felt after our care of it.

The culprit...

Interesting, huh?  It actually made us feel good in that she could in some tiny way experience getting a blister and then the relief from the treatment of it.  I like to think that for all the blisters Bella got that we lanced and treated similarly, we made her life a little more comfortable.

Last but not least, I have to tell you about an amazing project one of our very own blog readers is undertaking right now.  My hometown friend, Tracey Dauphin, has "adopted" a soldier stationed in Iraq.  He commented to her that he and his buddies are afraid the american people have forgotten about them.  So, Tracey has launched a gratitude campaign on her facebook profile to let this soldier know how many of us are grateful for the work he and his fellow soldiers do for us, day in and day out.  She is asking people to make little "Thank you Ethan" cards/posters and take a picture of them holding it wherever they are from.  She has a facebook photo album called Our Thanks to Ethan!  where there are 48 photos of thanks from all over.  Please go check it out, and if you are as inspired as I am about this, make one and message her for how to get it to her.  She asked me if I would make one and put it in Julian's bassinet at the hospital, and I was so choked up by the idea, I did it immediately.  You can see baby Julian in the photo album!.  Well done, Tracey, it was an honor to be asked to participate!

I wanted to share this story yesterday as the pics were taken yesterday, but for some reason, Blogger wouldn't upload the pictures, so I didn't want to tell the story without showing the picture obviously!

Alright, time to get some sleep.  We are home.  We are so happy.  Tomorrow is Ali's first day of kindergarten.  We all get to see her off in the morning because Julian was 8 hours early on Monday.

Good job, Julian and Bella for orchestrating that one!  It made ALL the difference.

God night.

We couldn't touch Bella in her isolette, but the music could.  I recorded mommy reading bed time stories to Ali and positive affirmations to Bella with me playing guitar in the background in mommy's hospital room, then played them through my iPod to Bella in her isolette.  

Tuesday, August 23, 2011

August 23, 2011: Julian's Second Day...


I never covered the fact that I'd post last night (even though it was a Monday) because I figured y'all didn't wanna be left hangin' till tonight!  LOL.  So, last night was a bonus and here we are at Tuesday again.  I'm not quite sure if I'll post daily for a while as things are moving and will move with great speed for our family over the next 30 days without break.  I already remarked to Ang tonight, "How did I ever post daily?"  I am genuinely at a loss for how I pulled that off for so long, ESPECIALLY given the amount of intense pressure and stress we were under.  I suppose it was as cathartic for me as it was informational and inspirational for you.  Anyway, I really should be sleeping right now because he is, but I feel obligated to keep you posted, so I'll keep the text short on the day, but the photos a' plenty.  Fair enough? :-)

Also, THANK YOU for allllll your wonderful comments last night and today.  We feel your love and support, and it is extraordinary to receive such love from so many from near and far.  We feel honored to receive your prayers, wishes, intentions, concerns, thoughts, vibes, energy, emotion.  They are yours to give, and in this overstimulated world, the fact that you point them our way humbles us.

Okay, so Julian had a busy day at the pump today. ;-)  He fed something like 15 or 16 times from midnight to 5 pm tonight.  All night, all day, he fed.  Needless to say, we went on two nights without much in the way of sleep.  No biggie; we expected as much.

Good news, though!  Looks like Ang will get to discharge a day early!  We are REALLY excited about this since Thursday is Ali's first day of kindergarten, and is our original discharge date.  Well, as I have always said, Ang is a machine of strength and grace, and is dressed in PJs, unhooked from everything, eating solid foods, walking to the bathroom, and even walked a lap around the entire unit today!


Julian's doc saw us this morning and said he's clear to go when she is, and Ang's doc saw us this afternoon and said she's cleared to leave tomorrow evening if she wants to!  We are most likely outta here.  I asked her what would the pros and cons be to staying, specifically the pros, and we really couldn't think of one.  Know a lot of moms who deliver via c-section on Monday that go home Wednesday?  Me neither!

Alright.  One last story:  I was remarking to grandma this morning how Julian was up all night after sleeping all day to which Ali chimed in without so much as a thought, "That's because he's nocturnal."  I think she's ready for kindergarten, don't you? ;-)  (All around proud papa tonight!)

Enjoy the pics from today.  Bella's is at the bottom.

God night.