The Aunts Come Marching In

I don't know if it was the California sunshine or this precious little goose, but either way were able to lure my Aunt Teetsie (remix of Theresa by one of us when we were young) down from Seattle for a week to hang out with us back in May. We had fun walking along the beach, a quick trip up to Redondo for cousin Dom's second bday party and lots of shopping and lunch dates. We really tried to make her miss Cali by taking her for a cruise to La Jolla topped off with a fun lunch at the La Valencia Hotel where the Goose (and her monster stroller) got the royal treatment.

But quite possibly the most valuable discovery of her trip was the magic of the 'Jump in the line/Shake Senora' song that prompted Makenna's first outward chuckle at 2 and a half months old. We all know Pandora can throw some wild cards at you, but this just might have been the wildest. In the full throws of her reflux angst, butt naked and wearing a ducky towel, this song came on and we went from distress to pure heaven and it continues to make her laugh to this day. I'm sure Winona Ryder would have been proud (name that movie!).

Fancy shmancy at the La Valencia

Seals in La Jolla

And speaking of SEALS. . . .

My sister (you may know her as the 'Seal') made her way to the mainland for a visit back in June. Now I know it wasn't the California sunshine that brought her here from Hawaii ('Dina - how can you live here? It's so COLD in Southern California!') so I'm going to say it was the Goose. Either way it was so nice having her here to spend time with us!

No this photo isn't in black and white

In other, less fun, news I was contacted by Boston University to participate in a study as they are researching birth issues that don't run in families or have any known causes, and since we've got this times three I figured I better sack up and do it. The only discomfort listed was the 'anxiety that may be caused by some questions' asked during the phone interview which had me a little apprehensive before we began. All in all I realized that because I'm a worry wart (something that DOES run in the family) I was neurotic about doing everything 'right' during my pregnancy and ate enough leafy greens to make even Popeye blush, so I wouldn't do anything different and that these things sometimes just happen.  I don't know if that makes it better or harder to understand, but I do know that this kid is amazing and that all of this crazy stuff she has had to (and will have to) endure will only make her tougher and even more awesome.

My Moon and My Stars

If this face doesn't bring a smile to your face...you may need a new face.

KTS

I prefer referring to it as 'KTS' because it sounds a lot more like a surf brand than a vascular condition, and its almost impossible to say 'Klippel-Trenaunay Syndrome' out loud and not sound like a complete idiot (you totally just tried it, didn't you?). Anyways, some people have asked me about this, some people have braved the wilds of the internet, while others are blissfully unaware, so I thought I'd lay down the quick skinny on what's going down with the Goose these days.

She got diagnosed the day she was born while in the NICU by the guy who literally wrote the text book on it, and we've been assured that it is completely unrelated to the omphalocele (her surgery) or the pesky kidney thing that's still hanging around (the trifecta!) which makes her one pretty special little lady. The symptoms that awarded her with this incredibly rare title are that she has one limb larger than the other, in this case her legs,  and extensive port wine stains.  That day we were told that her condition could 'get better or get worse' over time but we've come to find out that was only in reference to the difference between her legs and not the PWS, and it appears that our chubby little hedgehog has filled out in all the right places in the past couple weeks so the difference is barely noticeable at this point - you'd have to be looking pretty closely for it to tell and we're praying this continues to be the trend. Heck, I've got one eye bigger than the other which you've probably never noticed (caught ya! You were just about to scroll back to pictures...) so a little character never hurts.

Although this Momma has a penchant for polka dots, unlike regular birthmarks that fade to brown or disappear as you get older,  PWS are a result of some blood vessels gone haywire and only get progressively worse over time. Her engineer dad likes to describe it as a 'vascular programming issue', and depending on their location, they can make the organs closest to them go a little haywire too which is what we've been doing at all these appointments over the past couple of weeks, which have thankfully come back normal (the biggest of which being a check on her spinal cord).  Apparently you'll rarely ever come across them reaching their potential because everyone gets them treated at some point, preferably when they are as young as possible to achieve the best possible results without any memory or pain to the little one.  They have been known to start these laser treatments when babies are only weeks old but have decided to give us time to chill out for awhile since we've already had her surgery to recover from. And while it is unbearably hard to think of her going through anything more than she already has, we have been assured by every person who has knowledge of and/or experience with PWS that this is something we MUST do for her as it will only get more difficult, with less positive results the longer we wait and would be a huge disservice to her not to do this at this time.

All this being said, if you've met her, seen her, loved her, you already know she looks like the happiest, healthiest little goose around and you'd never know she'd already been through so much. Not to mention we think she's pretty freakin' cute and are hoping her bigger leg might even give her a leg up in soccer some day (pun totally intended - I'm obviously not above the lowest form of humor). So if you've got a nano second or two free please feel free to send any prayers, karma, happy thoughts and good vibrations to Makenna as she starts her next medical adventure!

The Holiest Hedgehog

Last Saturday I woke up to Mark saying 'Let's get this goose sinless!' with a quite a bit more energy than he usually has at that hour. We were both pretty excited to celebrate Makenna's baptism with our family, friends, and tacos. . .lots of tacos, on what turned out to be a pretty beautiful day.  Since we had our hands full most of the time, we left the picture taking to the pros (Vince and Tara) and are so glad we did because we got some pretty nice shots of the day.

For some reason I thought it would be a good idea to have a practice run before the real deal so I tossed the goose into the whale of a tub and splashed some water on her head before she suited up in the first of her three outfit changes for the day. Based on the pic below I'd say she handled it pretty well, and looked much like this during the actual dunking too (yup, she slept through it and only looked mildly annoyed when they poured the water on her head).

The Deacon opened by saying this was a celebration of the children, so even if they cry, fuss, yell or poo don't leave because that's what they were born to do. But while a little toy car cruised down the aisle and a mother wrangled her runaway son on the altar Makenna just sat there mildly amused until she got bored and decided to snooze through the rest of the ceremony and pictures. No complaints here!

Dress made by Mark's Aunt Maureen

The Deacon doin' work

The fam getting in on the action

Godparents

Most of the crew

After the ceremony we headed back to our house and had a great crowd of almost 50 people for lunch. The baptism just happened to land on the annual community garage sale day so our guests had to park a little further away than usual, but on the upside they could pick up a used coffee maker on the walk over.

Tacos!

The peanut gallery

Santa Clara ladies

Mamas and their babies

Apparently Dom prefers his cousins to be Catholic because he really warmed up to her this weekend

Dad trying to grill Vince on his job

Accessory from Auntie Lu

Love this little hedgehog

The Grandmas

Bib from Aunt Becko

Feels good to be sinless!

Thanks to everyone who helped us celebrate this special day!

Hip Hop

This past weekend marked the Goose's very first Easter. My family (minus the Seal) came down for the weekend to join us and Mark's family for all of the fun. This was the first meeting of the cousins so we were anxious to see how they'd react to each other. There was some skepticism on Dom's part and complete obliviousness on Makenna's but all in all they seemed to hit it off just fine.  The were set to face off in the egg hunt on Sunday so we joked earlier that week about hiding an egg in her footie to see if she could find it to train for the big event. Although she didn't put up much of a fight (she slept in someone's arms on the couch while Dom cleaned up), she did do some pretty exciting things that weekend - like make it through 99% of her first mass, and. . . well, that's it I guess. If you ask any of the grandparents they'll say they were the first to get her to smile, but without any *credible* witnesses we had to wait to put that one officially on the books until Tuesday.

Some of the goings on:

Warming up the bunny ears the weekend before

Uncle Mark taught Dom a new game

Uncle Scooby doing some intros

Auntie T doing double duty

Nonna heaven

Heeeyy Easter Bunny

Squishy Hedgehog

Godparents

Our little family

We were so lucky to be able to celebrate this big day with both sides of the family. First major holiday is in the books!

First Few Weeks

The past few weeks have been pretty surreal - we really couldn't have ordered a sweeter, funnier more mellow little girl than our little Goose.  I don't know if its because we know what its like to not have her home that we really are enjoying every second with her and find even the most mundane things so enjoyable - Projectile vomit?... Hilarious! Toxic diaper change?... So cute! - but we love getting to know her and introducing her to our silly world.  We were even lucky enough to have her Nonna come stay with us for a week to hang out.

"So tell me more about this library..."

As you can imagine she doesn't do all that much just yet, but she definitely has her likes and dislikes, many of which were things she was vicariously exposed to while on the inside.  For instance, in a tribute to her Auntie Island Anna she LOVES reggae music, especially my Slightly Stoopid Pandora station that I listened to during work.  I also used to sit on a yoga ball all day at my desk and now a couple seconds on this thing and she's out like a light. Putting the two together now is a blissful combination. She also loves her under the sea activity gym and has a love/hate relationship with the killer whale. She is intrigued by his majestic whalish beauty but shows her affection by giving him quick jabs to the fin over, and over and over again.

Reggae + Ball + Window = Baby Whispering Trifecta!

Do you speak whale?

Just hanging out with her friend

See the resemblance?

For being new she is a pretty popular little person as she's gotten her fair share of visitors over the past couple weeks.  Kevin and Jamie came by for a sneak peek of the sleeping hedgehog/goose in her natural element (the swing in the living room) and K1 and Vince stopped by on their way to Coronado to shower us with food and flowers, even though it was Katie's birthday. Mark's friend Darren got some quality time as the boys watched her for an hour while his wife Emily and I went out for a nice (couples - surprise!)  massage.  Dana and Christina also came by with some much appreciated food just before their little nugget made his appearance on Mark's bday a couple weeks later.  Throughout all these visits and countless drop ins from the neighbors she's been her calm, cute, cuddly little self.  But right on cue when John and Egg dropped in for a quick visit she did all the things you expect babies to do at this age - poo (x4), cry and burp, in no particular order.  But the prize for greatest distance traveled has to go to Mark's good college friend Jarrod (J-rod) who was out from Virginia on a business trip and drove up from the airport to see her.

First comes love, then comes marriage . . .

Darren and Emily

Just days before Ryland made his debut

Old Santa Clara buds

Becky also flew in for a quick 24-hour trip and spoiled us with meals, gifts and entertainment (her little rental car was like a clown car minus the clowns) and then proceeded to send US a thank you note once she got home - silly Becko . She also snuck in some good snuggles with the goose and experienced her first trip to the beach with us!

Acai anyone?

She's in there - I swear

The Marathon

The only bittersweet part to the past few weeks is that since we got the diagnosis of the omphalocele back in October, I had pictured getting through everything - the end of the pregnancy with all of the tests and stressful appointments, labor, delivery, the surgery, the NICU stay - as a marathon with finish line being when we would get to bring her home and everything would be ok.  But getting the KTS diagnosis has felt like someone telling us we have another 26.2 to go-  all slightly uphill.  In addition to her current symptoms, there is a whole list of potential problems and side effects so we've been going to specialists all over San Diego County to rule out other potential problems, some of which are very scary. This alone has been hard because instead of me having to go through the painful tests and exams, we've had to watch our little girl be subjected to more poking and prodding. They plan of action (our only choice at this point) is to start a series of treatments on her legs in the coming months - at least 6 treatments that will all require that she be put under general anesthesia.  Finding this out was heartbreaking to me knowing that we'd already gone through that and that it was something we never thought would have to happen again, but we know its our only option and we'll do anything to make sure she gets the best care possible.

But randomly while doing some research about Carlsbad for a social studies project (not my own obviously) I stumbled across one of it's notable residences info and discovered that pro snowboarder Shaun White had two open heart surgeries before the age of one- and he seems to be doing just fine. In some weird way it made me feel better to know that it really can work out ok. And that she'll probably be in the Olympics some day and they'll write a wikipedia page about her. So for now we're hoping for the best and clearing a spot for her gold medal:)