Baby's First Birthday

Today is Scarlett's Birthday. She did it! She survived her first year of life which actually says a lot. Last week was "Congenital Heart Defect Awareness Week". On my facebook page I posted facts about CHD all week. One of the facts that I listed was that each year 40,000 babies are born in the U.S.A. with a CHD. Of those 4,000 will not live to see their first birthday.  Scarlett has defied the odds. She is a fighter. She is a survivor.

Two open heart surgeries, 2 cat scans, 1 angiogram, 4 blood transfusions, countless chest xrays, echocardiograms, EKGs, needle pricks (for blood draws and shots), heart medications, feeding tubes, & cardiologist visits, she is alive and doing fantastic. If you saw her, you would never know the harrowing year she's been through. She just looks like a happy, healthy little baby.

I wish it were true. I wish she didn't have to have any more surgeries. I wish she didn't have to suffer anymore, but at the same time.... I am just to thankful and happy that I have her in my life. Sometimes I hear or read on other heartmom blogs "I wouldn't have it any other way"...[meaning that they are pround to be a heartmom, or they're proud of their heartbaby], but I guess I'm a little more selfish.

I wish that Scarlett was healthy. If I had my choice... I would chose for her NOT to have a heart defect. I hate to see my baby suffer. Yes, I am proud to be a heartmom, and yes I am a very strong advocate for heartbabies and CHD Awareness, but if I had the choice...I think I wish that CHDs didn't exist. But God chose me. God chose Scarlett. and there is a reason for everything under heaven.

There are tears in my eyes right now thinking about the first year of Scarlett's life. She's been through so much, and yet she is so calm and happy and perfect. My poor little daughter has endured more in her first year of life than most of us will ever have to suffer in a lifetime. She is so brave. She is my inspiration and my hero. Sometimes I just look at her and I start crying. She is such a tough little girl.

Happy Birthday Baby Scarlett. God Bless you and keep you healthy for many more birthdays to come. I love you baby bear.

CHD Awareness Day, February 14th

Yesterday was February 14th, Valentine's Day. Also known in the heart world as "CHD Awareness Day: A Day for Hearts". I chose this very special day to celebrate Scarlett's 1st Birthday (3 days early).  I had a HUGE party for her and invited half of the city of Phoenix. A ton of people came to celebrate and honor my little heart baby. What a heroic year she's been through. I still get choked up whenever I think about it. (including now).

Recently I had a couple of people comment that I hadn't updated my blog in a while. I told those people that I didn't think anyone was reading it, so I stopped updating it. The only way I know that people are still reading it is if they leave a comment...or if they tell me (in person) that they're reading it. So, I promised these people that I would start updating on a regular basis once again.

Afterall, just because she's had her second surgery [and heart-wise is considered stable for now], doesn't mean that people don't still inquire how she's doing. Speaking of how she's doing... she's doing great! She's eating, she's gaining weight, she's almost walking, she's talking/babbling more, she takes baths in the regular bathtub [instead of the baby bathtub]. Her favorite activity is watching her big sister Violet (who recently celebrated her 3rd birthday).  My babysitter said that last week Scarlett said "Violet" twice when she saw Violet. So, now she knows "ma-ma", "da-da" and "bi-let". Absolutely adorable.

I will post pics from the party on my next post. But for now, I just wanted to say "I'm baaaack". So, look forward to more posts from me on a regular basis. : )

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!