We went to DISNEYLAND!!

Ah yes. The trip I have been mentally planning since our last trip with Gregory when he was about 5, finally happened. We booked our 5 night, 6 day, 5day hopper pass trip to Disneyland via Costco Travel. We stayed at the Hyatt OC, which is where we had previously stayed and fell in love with. And NO it wasn't JUST because they have a Starbucks in their lobby, though that was definitely a perk. :) I have to say, I thoroughly enjoyed my booking experience with Costco Travel. They offer fantastic rates, and include lots of great and fun extras. Such as a Character Dining Experience for each staying guest(we chose the princess experience at Ariel's Grotto for Ava since Greg REALLY didn't have a preference and said as long as food is involved he is down, what a good big brother! ;), travel tags, lanyards, pins, a $20 Disneyland gift card(yeah it pretty much bought the equivalent of a pack of gum and a drink) extra hours in the park, preferred seating for shows, etc.

So we were set to leave for Anaheim on Monday, February 15th. On Sunday, the 14th, Husband surprised us by announcing we would be leaving a day early, HOORAY! So we quickly got the kids situated and packed up and we were on our way!



The hotel actually upgraded our room from what we had reserved, a kid's suite(has the main part of the room, plus a smaller room behind glass doors that has a bunk bed, tv, etc for the kiddos) to the family suite. Which had the kid's room with an attached bathroom and vanity, the "living room" common area, and our bedroom with another full bathroom. It was newly renovated and plenty roomy for us four. And because I always get comments about how I never take photos of the hotel room(who thinks to do that?!), I actually have a couple to share, sorry...


our room

kid's room

family room

































We arrived pretty late that evening, and decided to just take it easy so we could wake up early and ready to go the next day. The kids did really really well on the car ride. Ava luckily slept most of the second half, if not more, and Greg had his lifesaving Nintendo DS to keep him occupied.

Our first night in the room...








































Day one we winged it and spent most of the time familiarizing ourselves with the parks again. The great thing about staying at the Hyatt is they offer a free shuttle that leaves every 30 minutes to and from the park. So we used that to our advantage most days and would go home for lunch/Ava rest time. She never really napped, she never really does, but the rest was MUCH needed, seeing as how we didn't return back to our room until after 10pm most days. Gregory quickly remembered which rides were his favorite, which new ones he wanted to try, etc. Ava did what we thought she would do, and wouldn't go 20feet anywhere near Mickey or his friends. Sigh. She has a serious problem with people in giant furry costumes. Not a fan one bit. Poor mamas. Actually, they don't even have to be furry. She equally loathed and feared the totally fur-less jelly belly thing that was dancing around the Jelly Belly Factory last summer. Sigh...



















Day two was filled with rides, rides, food, playhouse Disney live shows, souvenirs bugs life shows, rides, food, parades, and more rides. FUN! We definitely brought back two VERY tired, very HAPPY kiddos to the hotel room that night.




























On Wednesday Miss Ava had a date with a few princesses. She was SOOO excited. To see the glee and sheer happiness in a child's face like that, it's magical. Seriously. I used to wonder what kind of nutjobs paid that kind of money for their kids to "eat with their favorite Disney Characters" I am now one of those previously said nutjobs. AND PROUD. ;) It would of been worth it at double the price. And the food was actually pretty darn tasty, to boot. We also spent the day going on every princess ride imaginable, touring Aurora's castle, shopping up a storm in the Bibbity Bobbity Boutique(that place is pure evil), and going on It's a Small World only about a million times. :)































So the next day we made it more about G, as much as we could. While him and bigger G went on Space Mountain, and all those other rides, I took Ava to meet Tinkerbell and Silvermist. We waited in a line that took over an hour and a half to get through. To meet two characters. Yup. I think that was definitely the final nail in the nutjob coffin. Oh well. Ava was again, beside herself happy to be meeting TINK and the "blue fairy" they signed her autograph book, talked to Ava about her favorite color(she was head to toe pink but insisted her favorite color was "purplicious") and Tinkerbell even insisted on dancing with Miss Ava once she saw Ava's cute princess ballerina tutu(purchased from that previously mentioned evil store that is chocked full of the cutest princess stuff EVER). It was the cutest thing ever to witness, and the big smiles during and after made standing in line, in the hot sun, totally worth it! Later that night, after the parade, we wandered over to Downtown Disney with the sole purpose of taking G out to dinner at the ESPN Zone. Well...turns out that's another place you really should make reservations for. 75minute wait for dinner and it's already 8pm?? No, thanks. Gregory was pretty happy just browsing the store, picking out an ESPN shirt and game, and calling it a night, though. So we went back to the hotel and ordered in.































Friday we got to the park early, and headed straight to Toontown. Ava saw Mickey and Minnie's houses and was STOKED to meet them...thank GOODNESS. So we stood in really short almost nonexistant lines and took pictures with each character, let G chose if he wanted to partake and walked through toontown a little bit more. Then took each kiddo on a couple of rides until it was time for lunch! Which we had at the super yummy restaurant that is inside the pirates ride, Blue Bayou. Oh, it was SOO good. After that, we just let the kiddos do whatever rides they wanted to do, as many times as they wanted to do them.




















The trip was fantastic. The kids both had a wonderful time. And we were EXHAUSTED. But in a good way. I am just super thankful that we are able to take a trip now with Ava and not have to worry about as much as we used to. In fact, this was our first real trip besides to San Francisco, that we have all gone on together since Ava's birth.

Greg was worried in the days before the trip that there wouldn't be much for him to do at Disneyland, but he quickly found out that there was still PLENTY that held his interest!Plus, he was a tremendous help with his little sissy. He never once complained if he had to accompany Ava on to a couple of her rides because she would request for brother to go with her, or when we went to the princess lunch. Ava overcame her fear of people in big costumes(hooray!) and had the time of her life, one she still talks about and reinacts with her dolls and any willing and able body. :) We owe our amazing time to the guy who works his booty off to provide for his family and never, ever complains about it. I married one incredible guy, and the best father around! Thanks hubby, we love you so much!!

CHD Awareness Week

Hi all!

I have been majorly slacking again with the blog. Shameful. ;P But what better way to jump back in than to dedicate a posting to my inspiration of the week(all the time, really. But especially this week), Miss Ava.

Let's first start with some CHD facts.

* Congenital Heart Defects are the #1 birth defect.

* Although some babies will be diagnosed during gestation or at birth, sometimes the diagnosis is not made until days, weeks, months, or even years after. In some cases, CHD is not detected until adolescence or adulthood.


Ava was born without any complications, and certainly with no prior indication of what was going on with her little heart.











Ava was my dream come true. My healthy, beautiful, perfect little girl. She was cute, and as pink as could be. Who would of thought...

There was no indication of what was going on in little Miss Ava's body. The doctor detected a murmur, Ava wasn't eating very well(milk was coming out of her nose and she would tire before taking much in), but were reassured that everything was fine. Ava spent the night with me in the hospital, anticipating an am discharge. That morning, the nurses took Ava to, as they told me, "run just a couple of simple little tests to make sure that murmur is harmless." Hours went by, something wasn't right. We ask nurses, they don't seem to know much though. Finally, Ava's pediatrician comes by and says that we are officially discharged. I specifically asked, "So the murmur was harmless, then?" He gives us a big smile and says absolutely. Free to go home. We are SO happy, SO relieved. We ask where our daughter is and he lets us know she is on her way back to the room. He leaves the room. My husband has to go pick our son up from school. Not 3 minutes after he leaves, an older gentleman in a white coat with a very stoic look on his face and an apparent aversion to eye contact enters my room. Now, I am not psychic or anything, I don't even believe in such a thing. But I just knew. I can still feel that fear and utter sadness deep in my heart the moment I first met Dr. Van Gundy, as if it were just earlier today. He asks to come in, to speak with both my husband and I. I let him know my husband won't be back for at least 20minutes. He asks if he may go ahead and speak. I think I kind of just nodded my head and grunted.

I am a Pediatric Cardiologist. Your daughter has something very wrong with her heart. Something we refer to as Hypoplastic Left Heart Syndrome. A very serious form of Congenital Heart Disease. You have two options. Permit her to be transferred to UCSF or LPCH, or take her home and give her comfort care until she passes. Her CHD is not compatible with life. Without surgery, she will die. With surgery, there are many fatal risks involved. Her quality of life is unknown and nothing is guaranteed. I have had parents go through the surgery and later regret it, and vice verse. You have two options. I am sorry. I am going to leave now and return in a bit. Please discuss this with your husband and make your decision.

And there I was. Alone. Broken. Confused. And the most scared I have ever been, and hopefully will ever be. I tried to hold it together long enough to call my mom and try to get a hold of Greg. I somewhat succeeded. I can't even remember what I said when I got my mom on the phone, but I know it was enough to alarm her and for my husband to decide to leave Greg at the grandparents before coming back to the hospital. Once he got there, the nurse came in and gave her apologies, said she was going to shut our door and to take as long as we needed.

My sincere apologies to any other new mommies that day at Mercy San Juan who may have heard me screaming and crying.

We let it all out, and immediately wanted to see our precious little girl. Nobody warned me for what I was about to see. Not that it really would of made much of a positive impact on my mental stability at that moment.



Imagine giving birth to an absolutely perfect, beautiful, precious, special little baby. They score so well on their little newborn APGAR tests, you struggle nursing them, but love that bonding time, they spend their first night of their life right beside you. You are SO exhausted, but can't help spending half the night just staring at your little miracle. You wake the next morning and continue staring in awe, just totally smitten. You take in her newborn smell, her baby bitty toes, fingers, who does she look like, look at that perfect skin! The next time you see your baby, she is hooked up to so many machines, her umbilical cord has been cut for more access, and half her tiny face is covered in tape. Tape that is holding in her breathing tube. She is in a new room of the hospital. One you've never seen before. This room is full of tiny little babies, all hooked up to breathing machines, tubes, lines, on medications that are keeping them alive. Heartbreaking and soul crushing doesn't even scratch the surface.















As a mommy who hadn't even heard of CHD before, who only knew of defects caused by poor decisions made on the parent's part, I couldn't stop thinking, "I did this. What did I miss, what did I do wrong that put my precious child in this position?" I hated myself. I can honestly say it took months, if not longer, to get over that, for the most part. I went over my every activity with a fine tooth comb. Ava's birth was planned. I started preparing for her weeks before we actually conceived. I read every book and article I could get my hands on about how to have a healthy, and safe pregnancy. Those who were around me while I was pregnant with my diva, can vouch. I was almost neurotic about making this a healthy pregnancy. But it simply wasn't enough. What I, in my naive state, grew up believing was simply; you take care of yourself while pregnant, you make every possible effort to make that baby priority number one ideally even BEFORE you are pregnant, and you will be rewarded with a happy, healthy child. A few exceptions, for someone of my age and with my somewhat clean family medical background, highly unlikely. Never even heard of CHD. Why? Why is it that the number one present at birth defect, the number one cause for death in the first year of a child's life, taking twice as many children's lives yearly than all forms of childhood cancer combined, has little to NO coverage. And funding to match.


CHD Facts:


* The American Heart Association directs only $0.30 of every dollar donated toward research. The remainder goes toward administration, education and fundraising efforts. Of the $0.30 that goes toward research only $0.01 goes toward pediatric cardiology for CHD. Source: Children’s Heart Foundation

* This year approximately 4,000 babies will not live to see their first birthday because of Congenital Heart Defects. Source: Children’s Heart Foundation

* The cost for inpatient surgery to repair Congenital Heart Defects exceeds $2.2 billion a year. Source: Children’s Heart Foundation

* Of every dollar the government spends on medical funding only a fraction of a penny is directed toward Congenital Heart Defect research. Source: Children’s Heart Foundation

* Though research is ongoing, at least 35 defects have now been identified.

* 4-8% born with CHD have Hypoplastic Left Heart Syndrome

* 4-10% born with CHD have Atrioventricular Septal Defects

* 8-11% born with CHD have Coarctation of the Aorta

* 9-14% born with CHD have Tetralogy of Fallot

* 10-11% born with CHD have Transposition of the Great Arteries

* 14-16% born with CHD have Ventricular Septal Defects

* Although some babies will be diagnosed during gestation or at birth, sometimes the diagnosis is not made until days, weeks, months, or even years after. In some cases, CHD is not detected until adolescence or adulthood.

* It is a proven fact that the earlier CHD is detected and treated, it is more likely the affected child will survive and have less long term health complications.


These are our children, and they are dying. My daughter is a "happy ending" story. But Ava's story is far from over and we are promised nothing beyond the now. I have seen far too many of Ava's heart friends struggle just to live, or pass away. They all deserve better. And don't we owe it to them to help achieve that?

February 7-14 is chd awareness week. Please take just one hour this week, you pick the day, and educate yourself. Find out the symptoms and warning signs of CHD. Urge an expecting friend to ask for a pulse ox reading on their newborn, share the story of a chd warrior you know. If you are reading this blog, you know of at least one. :) Know that just because you see our babies running around and keeping up with the other children, or you can barely notice that fading scar down their chest, does NOT mean they are "cured" or that CHD's "can't be that bad." The statistics say it all.

This week, I am going to celebrate my warrior, and all heart heroes. I am also going to remember and honor those that earned their wings far too soon, and the families they left here on earth. I love respect and admire each and every one of you!