Ethan's Run 2010

It is coming up on one year. On February 17, 2009, my CHD baby Scarlett was born at St. Joseph's Hospital in Phoenix, Arizona. Well, on February 18 (one day later), her little friend Ethan was born at the same hospital. Ethan was also born with a CHD called Hypoplastic Left Heart Syndrome [or HLHS as it's commonly known in the heart world].  Ethan and Scarlett were hospital neighbors.  I met Ethan's mom Heidi  in the hallways of the hospital when Ethan was recovering from his first open-heart surgery, and Scarlett was recovering from her first open-heart surgery. They were coincidentally in rooms 17 & 18 (their birthdays).

Unlike Scarlett, Ethan wasn't released from the hospital after 3 weeks. In fact, Ethan became a permanent resident of the 7th Floor PCTICU for practically the entire duration of his short life. He was only released to be home with his family for a very brief period before being re-admitted again. After a 6-month long and painful struggle, Ethan earned his angel's wings on August 21, 2009. I don't think I have ever cried so much in my entire life. I'm getting tears in my eyes right now just thinking about it. It was the single-most hardest funeral I have ever attended.

Ethan's headstone:

In his honor, Ethan's mom Heidi has established the first ever "Ethan's Run" A 10K or 2 mile fun run/walk.  Proceeds will benefit the Scott and Laura Eller Congenital Heart Center [Scarlett's cardiologist office]. Heidi scheduled the Run for the weekend on what should have been Ethan's First Birthday.

The Run will take place on Saturday, February 20, 2009 in the East Valley in the Community of Las Sendas (northeast Mesa). In addition to the Run/Walk, there will be a fun zone at the park with bounce houses and snacks/treats. Children do not need to be registered.

 To register, click here.  There are interactive maps to see the 10K route and get directions. Mail-in forms can also be downloaded through http://www.arizonaroadracers.com/Calendar/ethans-run.pdf.

If you live in the Phoenix Metropolitan area and are free on February 20, please consider joining us. Thank you for your support of Congenital Heart Defects and for keeping Ethan's spirit alive.

More Weight Gain

I took Scarlett to the pediatrician's office today for a Synagist shot. This is a vaccination against RSV, which is a respiratory virus that infants and children can contract that is pretty serious (she'd have to be hospitalized). During the months of October - April, I have to take her to every month for a shot to try to prevent her from getting this virus. All of my heartmom friends have to to the same thing with their CHD babies.

So, this morning I took her for her shot and they weighed her on the pediatrician scale...and low and behold, she had gained another 5 oz in a week!! Last week at the cardiologist office she weighed 15 lbs 3 oz, and yesterday she weighed 15 lbs 8 oz!! Woo Hoo!! I know they're two different scales, but I was happy that she is continuing to put on weight. The butter is helping and the carbohydrate powder is helping! :)

I think she's pretty close to taking her first unassisted steps. She'll let go of the couch, coffee table, or other toy/object that she's holding herself up on, then stand unassisted for about 7 seconds, then think about walking, then fall right on her little bum.  My friend came over tonight with her daughter and Scarlett was acting like 'one of the girls'.

Scarlett was like: hey, let me play too guys!  Violet was being her bossy self. Violet says: "share!... take turns!!", and yet she doesn't follow her own advice...it's kinda funny, really.

My favorite smile.

Next week the home health care nurse is coming over for a visit/check-up. She's gonna weigh Scarlett again and I'm hoping she continues to gain weight. So far it seems like she's on the right path! Thank you everyone for all your prayers for Scarlett to gain weight....once again they worked!! The power of prayer never ceases to amaze me. and I love being amazed. :)

First Steps!!

I came home from work today and through the door I could hear excessive giggling. I just stood there listening. I hesitated and stalled to open the door just so I could listen to Violet laughing and laughing and laughing, and every now and then I'd hear a little laugh from Scarlett too.  I wondered what could be so funny to tickle her that much.

I opened the door and saw Scarlett standing up pushing a little toy (that assists with walking) and walking all over my living room. Then Violet would do the same thing (but she'd run circles around Scarlett), and giggle and giggle like it was the funniest thing on the planet.

I said "Oh My God! She's walking!", and Aimee (my babysitter) said "Yeah, she's been doing it all day!", and I said "Did Todd see her do this?", and Aimee said "No, I don't think so", so when daddy gets home, what a treat he'll get tomorrow morning!! (he works nights now).

I watched and watched and grabbed my camera and my camcorder to video tape and capture these absolutely precious moments on film. Scarlett looked so adorable. I haven't seen her walk before. She's very good at standing, but she hadn't quite taken one step in front of the other, but tonight I saw her push that little toy like she was pushing a shopping cart. With such ease... like she was an old pro.

Then on top of that my girls were TAKING TURNS!! My heart was filled with so much love. I have never been prouder to be a mother. I will post pics later, but I wanted to proudly annouce that my Scarlett is one step (literally) closer to walking. Way to go baby Scarlett! : )

Great News!

No pics today, just some fantastic news... Scarlett gained weight! Yeeeee-haw!  I was literally jumping up and down with joy when I saw what the scale read: 15 lbs 3 oz. She gained a 1/2 pound in 2 weeks!  I am so happy, I was doing a happy dance.  The butter helped! the carbohydrate powder worked! the less table food, more milk worked! I know it's only 8 ounces in 14 days, but it's a major improvement from her last visit and she FINALLY crossed the 15 pound mark!!!

Beth (Scarlett's cardiologist) said to keep up the good work and to continue to do whatever we're doing. She was pleased with what she saw and we don't have to go back to the cardiologist for 2 months!!!  Well, she wanted to see her back in 2 weeks, but I said "really?", and she said if I can get her weighed (like at her pediatrician, or elsewhere) and keep track of her weight gain, then I won't have to go back to the cardiolgist for 8 weeks (for the first time ever!).  This is a HUGE deal. I have taken Scarlett to the Scott & Laura Eller Congenital Heart Center every 2-4 weeks ever since she was born. Sometimes I feel like I spend more time there than I do at work! (not true, obviously).

So, to be able to go 8 weeks between visits is a very big deal, and I'm absolutely elated! :)  Way to go baby girl!!

Experimenting With Hair-do's

This is what I call the "Pebbles Flinstone" look. In general, I don't particularly care for the little tuff of hair sticking straight up in the middle of the head on any baby. As my friend described it, it looks like a little tree on the top of their head. But when you add a bow in the middle, the hairdo is instantly transformed to Pebbles Flinstone. This is the first (and probably last) time I've tried this hairdo on Scarlett.

I should add that it took an act of God to get her to sit still long enough for me to capture these pictures. She is definitely a baby on the go and hates sitting still for anything, let alone pictures!

She is becoming an expert at standing up. She's on her tippy toes in this pic. She's also becoming a little daring at letting go and standing unsupported for up to 5 seconds at a time. I think she'll be walking in no time!

She is also starting to make the most adorable little noises when she babbles to herself. To my knowledge she still only knows one word: momma.

This is her other new hairdo. Unfortunately this was the best picture I had of her two teeny tiny little ponytails. She really does look darling with them, but her hair is so thin it's hard to get the little rubber band thingys to stay in her hair!

She's got two little ponies in this pic too, but you can't really see them...and as you see from her facial expression she was in no mood to be photographed.

She has a cardiologist appt today. I am really hoping and praying that she has gained weight from her previous visit (2 weeks ago). We've been feeding her butter with her Gerber food and I've been adding a carbohydrate powder to her milk for Pete's sake!  But, I will try my best not to break down in tears is she is still in the 14lb category. I will post again tonight with the outcome. Wish us luck!

Best Christmas Ever.

Well, I couldn't have asked for a more perfect Christmas for my girls. Christmas Eve (Dec. 26) we read them "Twas The Night Before Christmas", and we laid out cookies and milk for Santa.

We tucked the girls in bed.... and I took pictures of 'visions of sugarplums dancing in their heads'. : )

Then Santa came!! He left a ton of presents for all 4 of us under the tree (which was previously completely void of presents).

  He ate the cookies and drank the milk too!!

Christmas morning (Dec 27), Scarlett was the first to wake up... after daddy of course.  I absolutely love this picture below, because when Scarlett woke up, she was sitting up in her crib with one binky in her mouth and 3 (count them, three!) more binky's in her hands. I always keep extra binky's in her crib so at night when she's crying and I can't see, I can just feel around for one and pop it right in. She loves her binkys, but this picture makes her look like a binky junky. ; )  [btw: her pjs say "Baby's First Christmas"]

 

Then finally, Violet woke up and the present opening began!

Violet asked Santa for only 1 thing this year. A flower. A red flower, "so she could smell it".  Santa brought her a beautiful long-stemmed rose (which you can see her holding in this picture and Scarlett is staring at it too).

Then they took turns opening presents.

Scarlett was so adorable opening up presents. She is such a little perfect little doll.

Violet was super excited to open every present each with the same amount of enthusiasm as the previous. After each present Violet unwrapped, she exclaimed "OPEN IT!! Open it!!" to daddy, because she immediately wanted to play with each and every one of her toys.   Daddy induldged her, of course (it's Christmas!)

Scarlett was just happy to be with her family.

Behold!! Crayons!!!

Scarlett was a lot more tame at present opening, but then again, Scarlett is a lot more tame at EVERYTHING compared to my little spitfire, Violet.

They got such cool and neat toys from their auntie Susan.  Scarlett got this super cool Tinkerbell chair that converts to a sleepingbag and pillow!

And Auntie Susan gave Violet this super cool Tinkerbell table and chairs!! Violet loves it!

A very special shout out goes to auntie Susan. She is such an amazing lady who adores Scarlett. She checks my blog regularly, prays for Scarlett regularly, brings special presents to Violet (who may feel left out at times) regularly, lights candles regularly, posts pictures of Scarlett on a "Scarlett wall" at work regularly, and is a total advocate and champion for my CHD baby. I am so thankful that God brought her in my life via Todd's work. Susan brought us bags (yes, bags) of presents for Violet, Scarlett and ME(!) for Christmas. She is a very generous and thoughtful person. Susan, thank you from the bottom of my heart. You are such a warm, caring, and special person. Thank you so much for making our Christmas extra special this year. Thank you for everything you've done for my family.

Okay, back to the Christmas blog, well, later that day/night Uncle Kevin and Aunt Kerri came over and brought the girls this really cool Art Easel. Todd and Kevin put it together that night.

Here is the finished product:

I couldn't have hoped for a more joyous and perfect Christmas for the girls. They had a blast opening up presents, eating breakfast that daddy made them (chorizo and eggs), playing with their new toys, and then hanging out with family later that day. It was a great day and I feel truly blessed. Thank you God, for all the blessings of the day. : )

Baby's First Christmas...sort of.

Merry Christmas! Although today is December 25th and technically Christmas, we didn't actually celebrate Christmas today. Todd had to work today and he has to work tomorrow too, therefore we're gonna celebrate (as a family) Christmas on Sunday, the 27th.

So, tomorrow night (the 26th), we're gonna put out cookies for Santa, read "Twas the Night Before Christmas" and do all the pre-Christmas traditional stuff for Violet and Scarlett. Then Sunday morning, we'll open presents like it was Christmas.

Today however, I took Scarlett and Violet to church for Christmas mass at St. Mary's Bascilica. It was such a lovely and beautiful celebration. Violet and Scarlett were able to join several other children in the processional, it was such an honor. They were each handed carnations to give to baby Jesus (in the manger scene they had on display in the church). All the children were dressed in their Christmas best (including S and V), and it was simply darling. I wish I had taken photos! : (

Then we got to sing Christmas carols with the choir and pipe organ (my absolute favorite!). Then the homily included the children again. We got to go up and sit at the alter while father Vincent told the children a story about candy canes, then he handed each child a candy cane. The whole mass was practically magical. A perfect xmas mass, I'm so glad I got to take Scarlett to mass for her first Christmas. We'll probably go again on Sunday after we open up presents.

After mass, we went to visit my uncle Ron where Scarlett tasted her first tamale. She loved it! (she is 1/2 Mexican, you know). I need to make some of my own, because she really seemed to enjoy it.

I took this picture of Scarlett standing on her own tonight. She pulled herself up on Violet's table, and proceeded to steal a wedge of grilled cheese (which she's eating in the top picture) which she nibbled on. I can't believe she'll probably be walking before her 1st birthday. She is doing so well. I am so grateful that I get tears in my eyes whenever I think about everything she's been through and how thankful I am to have her in my life. I will post more pics of our "real" Christmas on Sunday.  But for all intents and purposes MERRY CHRISTMAS!