Monday, August 27, 2012

Ella's second birthday pics! ... Finally!

We had such a wonderful day celebrating Ella's life! It was a small intimate party where Ella was surrounded by people who love and care about her, people who have prayed hard for her, and we loved sharing the day with them!

We had one very special guest, Ella's dear heart friend, Emma! We love Emma and her family, Emma and Ella had a very similar diagnosis in the womb, and with the conditions that they share being so rare it was an instant connection. We have been honored to follow Emma's journey as it started just 2 months after Ella's. Ella and Emma have the same surgeon, and we have been in the hospital in adjacent ICU rooms, we shared the Ronald McDonald house too, life just brought us together! Emma has had more complications then anyone should have to face, but she has continued to fight and she is one very tough little girl! We just love that Ella and Emma got to meet face to face for the first time! Though they have had very different paths since they were born, they are both without doubt miracles!


One of my best friends made Ella's beautiful cake! She is so talented and I was so blessed that she was willing to do this for us! It was super yummy too! (Thanks Lyd!)




We are so thankful for all of you who have prayed with us throughout her life and we are asking that you continue your prayers as we enter an new phase with Ella, now that she is 2 it is very important that her immune system builds so that she will be able to have as healthy of a future as possible! Including fighting infection and sickness during her next surgery and hospital stay. This is hard on us as you can imagine to change our mind set. It has been "she can't get sick" for so long that now trying to treat her more normal (not even close to healthy heart normal, but more normal then before) is a huge change for us! Really though, the whole purpose of keeping her sheltered so far was to save her life, literally, and now she needs her immune system to be strong to save her life so even though the approach will be different, the goal is the same... do what's best for Ella and keep her alive and healthy!

That being said we have hit a big milestone, Ella is currently fighting off her first virus. She has been struggling since Thursday night. She has had fever, runny nose, coughing, sneezing, some vomiting due to drainage, and it has been hard on us all. She has done remarkable considering never having been sick before. Her sats are holding steady for the most part (although about 5-10 points less then her usual). Overall she is ROCKING it and we are so proud of her! I was so dreading this first sickness, and even though it isn't over, and it is making for some sleepless nights full of coughing, it has been reassuring that she CAN do this! That she is STRONG despite having half of a mended heart and severely sick lungs. Right now she needs prayers for this nasty cough to subside and her oxygen to stay up (it's borderline for okay). We need prayers to continue to let her fight and not to be too afraid of the future!

Thank you all for your continued support and prayers as we walk this journey and as our sunshine pioneers the way for those to come!

As you enjoy the pics from her 2nd birthday remember how BIG our God is! Remember that Ella had only a 20% chance to live, remember that her first open heart surgery failed and they did an experimental surgery on her they had never done before, remember that we had to go through the transplant application process but God healed her enough to handle the surgery again. Remember that we almost lost her the night after her second open heart surgery, Remember that she has faced 3 open heart surgeries and 2 cath surgeries, remember that she is continuing to beat the odds and fight! Remember that everyday is a GIFT!



























Thursday, August 9, 2012

Happy 2nd Birthday Ella Dawn!




Sweet Sunshine,
Where has the time gone? You are such a beautiful blessing to me! Life with you is so full of Joy! You make everyday better with the love you share and the sweetness that pours out of your heart! Since the very beginning of your life, it was evident that you were especially strong. You survived being in my womb with little to no nourishment for several days. Though you only have half of a heart, it was strong enough to show up at only 5 weeks! You have fought and persevered through life and I know you will continue to face life with that same drive! You always inspire me to be a better person, to fight for my own life the way you fight for yours! I never knew someone could love someone this much, but you bring out the very best in me! Your life has brought joy to so many, if only you knew how very special you are! Lately you have been so grown up. You pray so many times a day I couldn't begin to count them, you say "thank you" and "please" for everything even when we give you candy for going pee pee in the potty you pray first before you will even take it, then you say "thank you mommy!" and put it in your mouth. You pray and thank Jesus for your heart meds that you take twice a day, you thank Him for every meal. You thank Him for your "scar". You thank Him for all your snacks. You pray that you don't get "sick". You pray for your heart friends. You sing twinkle twinkle little star, you are my sunshine, itsy bitsy spider, Jesus loves me, beautiful, and sooo many more. I love it when you sing beautiful and you are my sunshine to me, it makes my day, I used to sing You are my sunshine to you all the time when I was pregnant!! You love to "hold you" and "nuggle nuggle" You love reading books, and you have lots of them, but out of ALL your books you always chose one of your books about Jesus. You have 3 or 4 books about Jesus and you chose them over the others every single time. We tease all the time about you being an angle here on earth, sometimes I really wonder how we are so blessed with you!! You potty trained in 2 1/2 days and have only had a few accidents since then (still working on when we go out in public!) You love swimming and you are so brave! I love that you are so adventuress and independent! You are the PERFECT baby for me! I needed you to be independent to help me let go, and I needed you to be happy to  brighten my days, I needed you to be adventuress to stretch me. It has been hard having to keep you home through all the holidays the last two years, but you don't seem to mind being home bound and I'm okay with it too. God made me to enjoy home and to be germ conscious (I always got made fun of both of these things growing up) So I guess you and I are a great pair! You look so much like your daddy to me, sometimes I see hints of me in you and I see my cousins and your cousins in you often! Your hair is finally starting to get a little length to play with, and it is getting a little lighter. You had dark brown hair when you were born, then it all fell out and came back dark... it just keeps getting lighter. Your eyes are just stunning, they sparkle with life! I love that they are different colors, you are so gorgeous!! You still like to play with my necklace that I got when you were in the hospital and I have worn it almost every day since. When we were told that you only had a 20% chance to live, I was so scared, today was FULL of "love mommmmmy"s and "mooore kisses!" Snuggles, smiles, and hugs! Life is so sweet! Everyday with you is a gift that I treasure, you mean more to me then any words could ever say. I love everything about you! I am so proud of you, and I hope that as you grow this next year that you will keep that same sweetness and joy with you! You are learning faster then I have ever seen anyone learn, and this next year you will grow and change so much, I am SO honored to be your mommy and I am so blessed by your life! I love you forever and like you for always! Happy 2nd Birthday my beautiful daughter, my sunshine!

We would love if you would leave a birthday wish for Ella! I saw another heart mom had people that read the blog leave a comment for her daughter so that she can share it with her when she grows up, I would LOVE to have them to share with Ella when she grows up!! Thank you all for sharing this special day with us in spirit and thank you for your prayers!

Thursday, August 2, 2012

brag post :)


Just wanted to stop by to brag on my little person a bit!! I'm just bursting at the seems with love for her!!! Yesterday while preparing her birthday banner she walked up and proclaimed "i" just as I placed the letter "i" on the sign. I said "Jon did you see that??? Does she know how to recognize letters??" "I don't know, I mean I have showed her some." "So have I, but I had know idea that she knew them!!!" Jon decided to test her keep in mind she was even reading the sign upside down!!! Jon said "Ella can you find the "B"? " Ella pointed at the "B" and proclaimed "B!" We were shocked!! This went on from letter to letter where she was extremely accurate on most of them!!!! Ummmmm wow, apparently she is a genius.

The way she soaks up things is amazing! Today she has just been so cute! She loves to cheer on the USA in any event, but her favorites are the swimming and volleyball. She will randomly start to say "go go go, yes!" including clinched fists! She says "go USA go USA!". She was sitting beside me this morning and she was holding my hand and she wiggled my pinky around and said "pinky!" then she wiggled my thumb and said "thumb!" then she wiggled my fingers and said "fingers!" She can count, she knows her colors, she knows several scriptures, she knows animals and the sounds they make, she knows shapes, she knows how to match two pictures that look the same, she asks nicely when she wants something (most of the time) , she knows how to use my iPhone almost as well as I do, She is finally eating lots of solids and is dong very well, she still has never tried to get out of her crib or her big girl bed once we tell her to stay, She loves fruits and vegetables, everything we teach her she learns at record pace! Jon and I often refer to her as an angel on earth as she just seems too perfect to be a toddler, not that she doesn't have "moments", but they are usually very short lived!

She is potty trained and it only took about 2 1/2 days... AMAZING, she still has the occasional accident (maybe once a week) but I can't complain! She even keeps her pull up dry during nap! :) She is full of kisses and I LOVE it! Her random acts of love toward me and the constant encouraging words from her lets me know that that is what she is feeling and hearing from us, and I am so humbled that God is giving me this incredible opportunity to be apart of such a wonderful little girl's life!

She is so into singing right now! She will sing and sing and sing, using anything for a microphone and being the music/singing person that I am, I love it! http://www.youtube.com/watch?v=4OO8d6cJcmY&feature=channel&list=UL This is a youtube video of her singing "You are my Sunshine"

Currently she is in full control of my heart strings as she randomly exclaims "I love Mommy!" as she looks right in my eyes followed by her gorgeous smile! I make a huge deal over it every.single.time. Pretty sure that's why she keeps doing it ;) Butttt it is fabulous non the less, and for those of you that don't know me, my being overly excited over something isn't hard. :) When she does that I just melt into a puddle, so many times I have felt like maybe she wouldn't love me because of all she has to go through, The shots, the medications, the hospital stays, the recoveries, the restrictions, the cautions, the lack of bonding time when I couldn't be with her in the hospital... But she does love me, and that my friends is the BEST feeling in the WHOLE WORLD!!!! The whole pregnancy (that 2 years later I still haven't recovered from) The stress and concern that has filled our hearts and minds everyday since our first scare and 5 weeks pregnant, every sacrifice of family and friends, holidays, parties, outings of any kind really. ALL of it is Worth it. Life is so good and God is so faithful.

Today is 1 week from our miracles 2nd Birthday! I can't believe how far she has come from her "20% chance to live" diagnosis! What an amazing life we get to live!!! "This is the day that the Lord has made I will rejoice and be glad in it!" Psalm 118:24

Friday, July 27, 2012

July 27th 2010

 2 years ago today we started the most scary adventure of our lives as we left our home to live in the Ronald McDonald house of Dallas. Our Heart Warrior would be born in 13 days and face more then anyone should ever have to face. Today I am sitting here as my almost 2 year old is watching morning cartoons in her pj's with sleepy eyes and stealing bites of my breakfast! God is so good, So faithful. Thank you to those of you that have taken this journey with us!!!

Tuesday, July 17, 2012

July happenings and August plans!



Well this month is flying by, maybe because I will it to go slow as it is the last month before my sweet sunshine turns 2! I say it all the time, but I REALLY can't believe how fast time is going by!!!!

Yesterday mid-morning I made a spur of the moment decision that it would be the day we start official potty training. She has gone in the potty once or twice, but those were really just flukes. The day went surprisingly well I thought! She had one accident and the rest all in the potty! I woke up this morning thinking here we go, no turning back... I have a panty wearing big girl. It's surreal to think that she may never have another full day of diaper wearing again! Today has been more trying, she has had 3 successes (including her first poo poo!) and 3 accidents, I'm kinda confused as to why she is having so many accidents today after doing so well yesterday, but we are pressing on and skittles prove to be a great motivator! :) We are so proud of our big girl and her new skill!

Ella keeps us smiling ALL DAY LONG! She is so polite with her constant "thank you mommy!", "may I have _______ please?", and "no thank you". Her prayers that she says all day long are so sweet! The other day she had a box of cheez-its that we had just finished and she shook it and said "it's all gone" Jon said "yep it's all gone" she opened the box looked inside then turned it upside down and a few crumbs fell out on the kitchen floor, Jon said "Ella don't make a mess" she looked at her crumbs and folded her hands and said "Jesus, cheez-it's, amen!" put her finger on one of the crumbs and out it in her mouth. When she asks for candy she always prays for her candy before she eats it. She is talking so much and singing lots too! Love it when she sings "You are my sunshine" and "beautiful"! She is eating more and more solids, and is handling it very well! She still throws up every few weeks or so, but much improvement from the throwing up every.single.time. she eats! She just seemed to grow up overnight, I looked at Jon and said she just seems so grown up all of the sudden. :') *sniff sniff*


Speaking of growing... Ella will be turning 2  on August 9th!! We are so excited she is reaching another amazing milestone in her life! Birthday's are a BIG deal in the heart world, they are never taken for granted and are always a time to reflect on the long road we have been on! Last year we had a huge birthday bash  to celebrate Ella. This year instead of a huge room full of people and Ella having to stay secluded in a corner unable to open gifts because of germs, (that just doesn't sound fun for a little girl to me) this year, although we are JUST as thrilled, we are planning a very small party with a few of Ella's friends. I know so many of our family and friends will be disappointed to miss out on a party, but this is going to be WAY more fun for Ella!!!So this year we ask that you send extra prayers her way and we hope you all understand and don't get your feelings hurt. We originally planed another big party, but this year we will just have a big celebration with a small group and post LOTS of pictures and we hope you celebrate in your hearts along with us as we enter this new year!

Speaking of growing up, we are ready to leave the crib behind and move on to a big girl bed! She has never tried to climb out of the crib, which is why we have been able to keep it this long. She is nearly 3 ft tall so we decided that moving her to a toddler bed was not necessary. We started the search for a twin size bed. Being the "penny pinchers" that we are, we started looking on craigslist and quickly realized that this was not going to be cheap. A nice bed, new mattress and box springs, bedding... well you get the idea. Then I saw it, THE BED, it was a gorgeous white bed with four tall white posts, and only $100. We called as soon as we could but they said we were too late someone else had already called and was on their way to pick it up. I was SO disappointed, really more disappointed then I thought I would be over a bed, it was just so perfect. Later that eveing I convinced my sweet husband to call and see if it had been picked up yet, they said no, that they hadn't been able to make it then, but they were coming now. The next morning I called to make sure it really was gone. It was sold, gone. I texted him later and asked where they bought it he wasn't very helpful and just said "some shop in Moore like 8years ago" I then asked him who he sold it too, I thought just maybe they would sell it to me, he didn't respond, so I thanked him and decided to leave the poor fellow alone. The next day it hit me maybe I can find it online and buy it new! I searched and searched, this bed seemed as if it never existed, finally I found it, listed for nearly $1,000. Not only was that price just NOT an option, but it said it was discontinued. I continued to search for this bed (yes it was just that perfect)  and found it again this time listed for over $2,000 and again discontinued. I told Jon all about my findings and how disappointed I was. I asked him to call the man on craigslist again and ask who he sold it to, I would buy it for way more then they had bought it for by this point. Jon called the man, he didn't answer, Jon left a message and tried to explain the situation and asked him to call us back. He never called us back (I don't blame him really hahaha) So we decided that door was firmly closed and we began looking for a different bed. All the while I never could get the other bed out of my mind and all the other beds fell far short in comparison. We began searching in other nearby states hoping that we would somehow find this bed again. Finally after about a week or two... Jon called me to the computer, He had found the headboard of that EXACT bed! It came with two side tables and a brand new mattress and box spring. They were asking $450. That was way more then the $100 for the other bed, but it did include more. We knew we needed the foot board since it was supposed to be a 4 poster bed not 2. So Jon, being the amazing man that he is, took on the challenge and began a search to find THE BED! He called and called tons of places. We finally found the bed head board and foot board in Canada. They wanted $750 for the twin bed and $500 for shipping. Ha. Not going to happen. Then he found it in New Jersey, the man was very helpful and told us that the company that made this bed went out of business years ago, but this bed was one of his best sellers when he stocked them. He then told Jon he had 7 twins left in his warehouse and he had 1 full size left. He said he would sell the twin for $350 and shipping for $190! Now we were getting somewhere!!! A little pricey, but getting way more realistic for a dream bed! We talked about it and decided that a full size would actually be better, we didn't know it came in full size, but she will be able to use it until she is an adult verses the twin she will outgrow in her teens. We got excited and Jon called back to get the price for the full size, the man went to check and then when he came back he told us that he was very sorry, but he was mistaken, they had sold the last full size that they had. :( I was so bummed. I tried to stay positive, after all before a few minutes ago all I wanted was that bed in a twin! The next day Jon called a place in the Dallas area that used to have the beds.The man told him he didn't have those beds anymore, but that he used to get them direct from the company in China before they went out of business and he was the distributor to other furniture stores. He told Jon he had a list of all the furniture stores that used to carry it, he told Jon one of them might still have one, or at least a spare foot board (that we could put with the headboard we had seen on craigslist) So Jon called everyone on the list, finally a shop about 30 mins east of Dallas said they had a white four poster bed, but couldn't remember anything about it, it was up in their attic not even for sell anymore. She went upstairs and took a picture to text to Jon... it was THE BED in a FULL size!!!!!!!!!!!!!!!!!! Jon asked her how much she would be willing to sell it for, her answer was $150!!! Did you catch that???? $150!!!!!!! That is for a brand new full size bed that is worth $2,000-$3000!!!!! We said "we'll take it!" we also are purchasing a mattress from her and the brand new full size bed of our (my) dreams, plus a full size brand new mattress is going to be less then $350!!! God is SO good!!!!! Blessings even in the bed Ella sleeps on! We are going to get it in the next few weeks, now we have to hope it will fit in her room hahaha! She is going to look so incredibly tiny in that great big bed, but she will grow into it before we know it!

Thank you all for your continued prayers and support for us and our sweet sunshine! We are so very thankful for the love you all show us!! Many blessings ~ The Burks :)


Sunday, July 8, 2012

Pizza and swimming! Summer fun!

Ella and Daddy making our first homemade family pizza!



 Kisses for the cooks!

 Waiting patiently...

 and not so patiently :)

 someone stole some tastes!

 We make a pretty great team :)

 Swimming time!

 Not so sure at first...

 decided that she LOVES the pool daddy bought for her!

 Our sunshine!

 4th of July cutie! We got stuck in traffic because of an accident and missed the whole firework show. :( But the few we could see from our spot on the interstate Ella called "sun" and "rainbow"! It was super cute! 

 Our almost 2 year old!!!!!!!!!!! 

Thank you all for continuing to follow Ella's journey and keeping her and her friends in your prayers! She is such a joy to care for and teach, life with her seems too good to be true! We thank God everyday for her life and for another day together, God has been so very merciful to us! 

Please keep this little one in your prayers (http://mackenna.bretzdemo.com/) I haven't personally followed her story, but she was brought to my attention today. Thank you!


Tuesday, July 3, 2012

Just some pics!

Went out to lake Hefner as a family a few weeks ago and had SO much fun!



 Ella loves "tree bark" :)

 My beautiful girl


Her eyes are so cool! God is amazing!

 She LOVES her Daddy!