Easter 2012

Ella's Easter Basket! 

 She is serious when it comes to chocolate bunnies! 

My sweet girl!

Hugging her bunny after biting off it's head!

 Egg hunt!

It was a great day just the three of us! This Easter I find myself so incredibly thankful for the gift given to us all! I think about the sorrow Mary must have felt when Jesus died, and what JOY must have consumed her when 3 days later he AROSE!! happy resurrection day! Today is Ella's 20 month birthday!!!! What a wonderful life I have being her mommy! She is such a wonderful little girl. I know I make it sound to good to be true, but it is just that amazing! Ella is talking so much now, She walked up to me a few days ago and started touching my face and said "Momma beautiful, Momma beautiful" Then she walked away saying "happy, happy, happy," Then she sat down and picked up her Christmas story book and "read" it saying "Jesus, Jesus, Jesus"! She LOVES to say "prayers" at dinner and bedtime, She often says "Ella beautiful" and she laughs at nothing and makes us laugh too! She is very encouraging and likes to say "Good Job" and "Yay" She is showing good manners and says "bless you" when we sneeze she says "please" and "thank you". She says "No thank you" and "all done" when she is finished. She goes to bed without a fuss, she eats good, she plays alone well, she doesn't do something after she knows it is a "no, no" She loves to watch "Boz" in the mornings and she likes to "snuggle snuggle" She is constantly giving unprompted hugs to Jon and I! She will just walk up and wrap her arms around our legs and squeeze tight and say "ohhhhhhh" It melts my heart every.single.time. She said her first sentence last week, She came up and gave me a hug, and while hugging me she said "I love you so much"! It was so sweet, brought tears to my eyes! She really is quite a hugger, she hugs everything, stickers, chocolate, toys, hats, books... anything. She is so sweet! She is as perfect as they come. No I'm not making this up. She is AMAZING! I say it a million times a day, Jon and I both talk about how unreal she is at least 10 times a day! On her fussy days, she is smiling 90% of the day. She rarely cry's at all. I could go on forever, but I have a feeling no matter what I would say it would never accurately describe how wonderful my miracle is! I hope you all had a wonderful Resurrection day! 
Remember to check our youtube channel for new videos of our Ella! "amyladawn"

Prayers for her heart friends!

http://www.youtube.com/watch?v=6t04fBssTkY

Feel free to look up "amyladawn" on youtube for more videos of Ella! :)

:) ABC's

http://www.youtube.com/watch?v=e8EaaNhAOYc&feature=plcp&context=C438f27fVDvjVQa1PpcFMuz-Y9zlVNw-znPctzQv_MbTeJEYLMv20%3D

pictures as promised! :)

Updated our YouTube channel! Search "amyladawn" for some super cute videos too!

A response to our first (and hopefully last) negative comment.

I (Jon) have a few things to say about this comment posted by an "Anonymous" person.

"I realize that she could get really sick if she caught a cold but don't you think that you are going overboard a bit. Are you going to always keep her in a bubble. How will she be able to have friends if you are that paranoid? She will have no immune system because you have kept her sheltered."

  I'm not sure who you are, because you chose to be anonymous, but this Blog was designed to update and encourage those who chose to follow Ella's journey, and is not the place to be posting inappropriate opinions publicly. But I will use this opportunity you've created for me, the Dad, to address some of the questions and thoughts that you, and maybe a few others, may have. First, I don't think you really "realize that she could get really sick if she caught a cold" or you wouldn't have finished your post. I also believe that if you were truly thinking of Ella's well being, and having the information we've been given, you too would be willing to make the sacrifices and hard decisions as we have. No, Lord willing we will not keep Ella in a bubble forever. Our Doctors say that a child under the age of two can be sheltered from germs with little to no weakening to their immune system. Ella still has at least one more open heart surgery to go, it is crucial for her to stay well. So as hard as it my be on Amy and I, Ella is more than enough reason for us to make the hard choices and forgo some things like church, family gatherings, friends, holiday celebrations,...etc. Also, I think we all know that Ella, 19 months old, still has time, God willing, to not only make new friends but meet the hundreds, even thousands, of people who have supported us and shown us love. I know, they would be honored to be called her friends. I realize that choosing "Anonymous" may have been an accident, that being said this comment was still unappreciated. It's never a good idea to post something that you don't have the confidence enough to put your own name behind. We are fine with people asking questions and even having doubts about the way we do things. We are happy to help educate others about heart defects and our lifestyle, but out right accusing us for the decisions that we have made for OUR special needs child that you clearly don't know about, is hurtful. Please remember that every decision we make is made with the best knowledge we have. We pray and ask her doctors before we go forward, and we know our daughter better then anyone else possibly could. 

A BIG THANK YOU to all those faithful friends out there who continue to lift our little family up in prayer, love, and support. It's awesome to experience God answering your prayers. Doctors tell us they've never seen a baby with her conditions do so well. Ella is a miracle, and that's all there is to it.

Please continue to remember Ella's little heart friends( Emma, Lyric, Annabelle, Scarlet, Evan, Bethany... etc.) 

Thanks, and God bless!!! Ella's Daddy

Update :)

Well friends, So sorry I haven't been consistent updating here! I know it must be hard for Ella's regular readers! The truth is we have been soaking up every minute! Ella is SO MUCH FUN! She is talking and walking all over the place, she is gaining weight well and sleeping pretty good too! She is a goof ball and constantly has us laughing! She just recently has been saying "Ella beautiful" We may have our hands full! We both tell her she is beautiful all the time, because well she is beautiful and she deserves to know that! Ella is so sweet, she is quiet most of the time, and plays well by herself. She loves books, and is learning so much! She is good at filling in blanks in all her books and in the alphabet. She can count to 10 with some assistance of course! She is learning her colors too! Ella is even starting to show some interest in early potty training signs! She often tells me she needs to go, but we aren't ready to start full potty training yet. She has gone pee pee in the potty once! Ella just loves flowers! She is sweet and often says "kisses" and of course that request has yet to be denied! :) We are just loving this weather that the Lord is gracing us with! It has been such a mild winter, and being home-bound it sure is nice to be able to open the windows or take a walk! We play with chalk and bubbles we watch airplanes and pick flowers, we sing songs, and have dance parties, we swing high, and laugh often. Life is wonderful and oh so full of love! What an amazing gift each day has become! Jon is just the most amazing husband and father for Ella and I. We are so very blessed to have him holding us all together! Jon and I have had a hard time finding "us" time since my mom is the ONLY one we trust to watch our sunshine, and she is super busy and of course can't come around if she has been around anybody sick (we prefer her to have not been around anybody for at least 24 hours before coming when possible!) So as you can imagine that has only happened a precious few times. Even when she is available, we have to majorly limit our contact with the outside world as well, we don't go out to eat on holiday's or busy times. We always ask to be seated in the corner. We use hand sanitizer about a million times, we don't touch our faces, we hold our breath when we can't avoid walking by a crowd. I am usually fighting a bit of anxiety just being away from Ella and being "exposed" the the germs in the world. We did manage to celebrate valentine's day (a week or so after too avoid crowds of course). We realized it was the first time we had been on a date in a year. We hadn't been out since last Valentine's Day. The only other time we have been out together was for a doctor appointment for me. So yes, it isn't often we get to be "us" but when we got to go out on Valentine's day, it just reminded me that He is always worth my time! I love him so very much! I realize that all the precautions that we take may seem overboard to many of our readers, friends, or family's, but I also don't second guess our decisions. So far the benefits of these restrictions far out-way the sacrifices! On another note it is crazy, but it's already time for me to start planning birthday party number 2!!! Still 5 months away, but wow, when on earth did this happen!?!? I hope to upload pics soon, so stay tuned, trust me she's a cutie! I also have quite a few video's that I have on my phone, if I can figure out how to post them here I will do that too! She is seriously ADORABLE!


As for a heart update, we are very pleased with Ella's heart! She is doing very well and she is holding her sats steady at about 83% her heart rate is nice and steady too! We were told at her last appointment that her next surgery could be as early as this summer, but I'm not convinced it will happen. I don't think they think it will either, it's just an option. That being said, Ella was scheduled to have her routine heart check up yesterday. Considering that it is flu season and that Ella is doing so well, we decided to reschedule (with the cardiologist's consent of course) We rescheduled it for May 21st! This is by far the longest time between doctors appointments EVER! We still see the home health care nurse here once a month, but that should end when the flu season does (can't be here soon enough). Over all we are on track and doing great! Thank you all for your continued prayers for our sunshine, we don't want them to stop just because of a good report. We know things could change in a heart beat, we have seen it. We love you all so much and are beyond grateful for your love, support, and most importantly your prayers!

Valentine's Day!

Dancing! 

She is adorable! 

 We had a great day!

 luckiest girl in the world!

 We kinda like each other ;)

 "Will you be Daddy's Valentine?"

 "Yes Daddy!"

 "Flower!" 

CHD awareness week!

(ornery face! Happy Baby!)

February 7th-14th is Congenital heart defect(CHD) awareness week! Up until 2010 I didn't really understand what a CHD was or what it meant. Now I know, I see a baby die nearly every week, sometimes several in one week. That is only in my very limited circle of heart families I have come to know. With awareness comes funding, with funding comes Research. With Research comes answers. With answers comes Hope! Help fight this silent killer. Spread Awareness!

Facts about CHDs:

-about 1 in 100 babies will be born with some sort of CHD in the U.S. That is about 40,000 each year.

- about 4000 of them will not live to see their first birthday

- twice as many children die from CHDs than ALL childhood cancers combined yet pediatric cancer gets 5x the funding.

-Congenital Heart Defects are the #1 cause of birth defect related deaths worldwide

-Of every dollar the government spends on medical funding only a fraction of a penny is directed toward Congenital Heart Defect research

- The cost for inpatient surgery to repair CHDs exceeds $2.2 billion a year.

-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
* source ( itsmyheart.org) *



What does it mean (to me) to be a heart mom?
-it means hearing some of the most devastating news you could possibly receive in what should be one of the most exciting times in your life.
-it means having your baby born into a room FULL of healthcare professionals with an observation room full of students.
-it means not getting to hold your baby the day they are born.
-it means handing them over for life saving surgery within days of their birth.
-it means holding your baby with so many tubes and wires that you can't hold them close.
-it means that days go by without getting to hold them at all.
-it means months in the hospital.
-it means watching your child in pain.
-it means doctors telling you over and over they just don't know.
-it means  many many doctors saying "this is bad".
-it means family and friends don't get to meet or hold your baby.
-it means not getting any sleep.
-it means not hearing your baby cry for weeks due to ventilator taking their voice away.
-it means watching them crash and praying for a miracle.
-it means fearing that you may lose your child, every. single. day.
-it means handing them over again, and again, and again, for more life saving surgeries.
-it means being a mommy and not being able to "fix it".
-it means not being able to have play dates and shopping trips.
-it means missing church, parties, holidays and family get together's.
-it means hearing "stethoscope" as one of your daughters first words.
-it means people not understanding my life.
-it means learning medical terminology that you shouldn't have to know.
-it means late night calls to the cardiologist.
-it means giving meds multiple times a day and feeling like the worst person in the world if you forget even once.
-it means having oxygen tanks and medical equipment.
-it means having to scroll through Dr., Dr., Dr., Dr., Dr., Dr., Dr., Dr., ... etc. in your phone book
-it means having so many doctor appointments you feel like your head will explode.
-it means watching your baby turn blue and get out of breath trying to play.
-it means not taking your baby to the park.
-it means being home bound 6 months out of the year.
-it means having your own health deteriorate as your special needs child becomes the priority.
-it means watching fear in your daughters eyes when any nurse is in the room.
-it means feeling like you have betrayed your baby girl when someone hurts her and she looks at you for comfort.
-it means crying yourself to sleep when reality catches up to you.
-it means feeling completely overwhelmed and alone.
-it means living a life you never imagined.
-it means doing more then you thought you could.
-it means people thinking you are crazy and overprotective.
-it means being your child's voice.
-it means having to ask the hard questions.
-it means constant research.
-it means smiling when you are scared because that is what your baby deserves.
-it means that even after the scheduled surgeries their is no guarantee.
-it means my baby will always have half of a heart.
-it means when her heart is tired of working twice as hard as all of ours, it will quit.
-it means not knowing long term results, 5 years ago Ella's conditions were 100% fetal with no hope for intervention.
-it means praying for grace and mercy knowing that your heart could be taken at any moment.
-it means this life is reality and will never end.
-it means that my baby will one day ask questions about her limitations that I won't know how to answer.
-it means celebrating EVERY milestone.
-it means thanking Jesus every night for anther day together.

Life means so much more when you have a daily reminder how fragile it can be. Unfortunately too many babies die from this horrible disease that I hate. Spread awareness, ask questions, be informed! If you or someone you love is having a baby, ask the tech to scan the heart well (even if they don't do more extended research, it will certainly get their attention) Before you leave the hospital with your new born ask for a "pulse ox test" so simple and COMPLETELY painless, it is a little light that they will wrap around the hand or foot to check heart rate and oxygen level. Early detection is crucial. Without early detection Ella would have only lived a few hours, if that. Some defects can go undetected for weeks, months, or even, years. But the fact is you could save a life if you just ask a simple question. I don't wish this upon you, but the fact is it could happen. I never thought it would be Ella. This week tell someone about a heart warrior! 

       This is VERY real