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!

Tuesday, June 19, 2012

Father's Day 2012!


Where to begin. Jon is the most amazing man I have ever known, the most incredible husband, and the perfect daddy!

Before we got married we talked about the future and knew that would include children, we both wanted a girl. Jon just wanted a little daddy's girl and I wanted someone to dress up and talk with! I told him I liked the name Ella, he liked it too. When we found out we were expecting in our 2nd year of marriage, Jon was ecstatic. I mean running through the house grinning from ear to ear! He was destined to be a daddy!

When I began to get very sick, Jon was the one with the strength to press on toward the prize. He was the one who gave me the strength to give Ella what she needed to survive. Jon is the one who prayed fervently for me and our unborn child.

As we set in the hospital during my entire 1st trimester, we discussed baby names. We had lots of time to try to come up with the name that would fit. Though we didn't know if we were having a boy or girl yet, we decided to just pick out a name for both so that the instant we knew the gender we could call our baby by name! I started second guessing the name Ella, I loved it, just didn't know anyone with that name so I thought people might not like it. Jon never wavered, if it was a girl her name would be Ella! I agreed, it would be perfect.

At 21 weeks we set in the ultrasound room awaiting our 4th ultrasound, this one was to reveal the long awaited answer to the question we had wondered since day one! Both of us prepared for a boy or a girl and excited yet hoping secretly for a girl. When we heard the news that we were the proud parents of a girl Jon was so cute! A great BIG smile, we would be having our sweet baby girl, her name would be Ella Dawn. We basked in the Joy that that day brought and continued our life. Jon headed out to work the next day and I laid in my normal spot on the couch about to prepare for the long day of vomiting and weakness, but this day would be different. This day I would start writing in Ella's journal since I was finally well enough to write for short amounts of time and since I knew she was a girl. I would talk to her and call her by name.

I opened her journal and wrote the verse about being fearfully and wonderfully made, since that was what I wanted my little girl to know. As soon as I finished the verse my phone rang, it was a nurse I heard some words about possible problem with Ella's heart and the rest was mostly a blur. I eventually was able to ask her to repeat what she had said. She couldn't tell me much, only that I had an appointment in 10 (LONG DAYS) with a perinatal specialist for an echo cardiogram. I hung up and couldn't breath. I needed to talk to Jon, he was the one person that I needed to hear his voice. I called him as he was hard at work and I couldn't speak, being the man that he is he was patient and concerned. I told him all that I knew, he offered to come home, I told him I would be okay. Somehow as I crumpled to my knees in the back yard, Jon managed to find the strength to continue working and finish out his day. He finds strength when it seems impossible. Jon never has missed one doctor appointment, even to this day.

10 days later we set in yet another hospital, waiting on our echo, the mood wasn't too heavy but was certainly not light. Jon was holding my hand and kept telling me we would be okay. The nurse did the scan and every question that we asked was met with " I really can't say anything, you'll have to ask the doctor". The doctor came in and gave us the news that our Ella had something called hypoplastic left heart syndrome and that she would need a series of three open heart surgeries and had about a 75% chance of survival. We were both in shock. I began to feel hot tears sliding down my face to my ears as I was still laying on the examining table. It was then that the doctor told us that we had "options" and that "some people would choose not to continue the pregnancy" I felt sick. I couldn't speak. I felt more tears as I shook my head no. Jon spoke the words I couldn't find. He said "NO, that's not an option for us". He had tears for his sweet unborn daughter, his dream come true. We felt so afraid. They told us they were going to move us to another room so that we could stay as long as we needed. Jon held me as I cried. He is a rock even when he is hurting. My mom gathered information from the nurses for us to read over what all of this meant. As we read we began to feel the reality of what this meant. Our baby had only half a heart.

Over the next two weeks we began to discuss the options of c-section verses natural birth and the pros and cons for Ella in the situation. We decided we wanted to try natural birth as long as she would be safe. We went back 2 weeks later for our next check up. I struggled, Jon stayed calm and assured me it would be okay, he helped me walk in to the hospital. This time we met with the pediatric cardiologist. They did another echo and then rather abruptly told us that there was another problem. The half a heart that she had, hadn't developed properly. We were faced with a whole new array of hurtles to jump. Ella would need to be delivered via c-section to survive and would have immediate surgery. We wouldn't get to hold her and we would have to go out of state, Dallas or possibly Boston. Then he told us that she only had about a 20% chance to survive. I melted into a puddle of tears. Jon, knowing that I was completely unable to hear what else the doctor was saying, managed to hold back the emotion enough to listen for me. He told me later that he knew he had to listen for me so he just kept focusing. How he found the strength to do that is a mystery to me and something I am so incredibly thankful for.

For the remainder of my pregnancy Jon remained steady and was the best daddy he could possibly be to his baby girl. One day in particular I was really struggling, he had gone to the grocery store to do the shopping (he did most all the shopping my entire pregnancy!!!) and he came home with two little soft fuzzy pastel pink and white outfits for Ella. It was our first purchase for our little baby, I hadn't physically felt good enough to shop and emotionally didn't know if I should. When Jon came in beaming with his purchase I saw so much love in his eyes.

The night before Ella was born, Jon and I set up a video camera in our Ronald McDonald charity house room, and we told her, her whole story. We told her that we were afraid and told her how much we loved her. We told her that we trusted God with her and prayed over her. We both shed many tears that night, and at the same time we were SO excited to finally meet our sunshine!

August 9th 2010 at 3:23pm, our Ella came into this world via c-section to a room FULL of medical staff. She weighed 7lbs. 4oz and was 19 3/4 inches long (although we didn't get that information until she was well over 2 months) Most people would say that was the moment Jon became a daddy, but he was already an old pro by that time. He had been a daddy for 39 long weeks already. They broke the rules and held her up over the c-section curtain so that we could touch her hands before they rushed her away on a ventilator to the children's hospital. Jon was the first one of us to touch her, he reached up and touched her right hand and then I reached up and touched her left. She turned blue and quite crying, the doctor had to take her away. Jon had tears running down his face as we looked at each other with smiles and fear. He kissed me and asked me if I would be okay, I said yes, just go. He rushed out to follow Ella and her team as I got sewed up. He sat by her surgery door for 7 hours as we waited. He came to see me and told me that she looked like me as a baby. He told me that she was just beautiful and that he would take good care of her. He kept that promise as he stood by her bed the entire night. He practically stood there every moment for the next several days. He helped give her her first bath, he got her first foot prints, he signed all the medical releases, he asked all the questions and watched all the monitors. He was and is SUPER dad! I have never known a dad to be so involved in a baby's care. Even though Ella had her very own nurse and sometimes she had two, he would not leave her, I can never thank him enough for being with her when I couldn't.

Then when Ella was 2 days old they told us that one of us could hold her for a while. Jon gave me the privilege of being the first to hold her, truly an amazing moment! The next day Jon got his turn to hold our precious sunshine for the first time. She was wide awake for the first time and just stared into our eyes, oh how she loved her daddy!! To this day she just looks at her daddy different than anyone else, they have a bond that is special. He cried and really felt like a daddy for the first time! By that time I had discharged myself from the hospital and was staying with Ella and Jon in her hospital room. I was in EXTREME pain, still so weak from the pregnancy, and I was pumping every 3 hours while sleeping in a hard leather chair with wooden arms. Jon would wake me every three hours and help me pump, he kept track of my pain medication, he would get up at 3 or 4 am when they would come in to take her daily x-rays and he would cover me with one of there lead shields so I could sleep and he would step out and then he would examine the x-ray himself before the tech would take it away.

As they took Ella to have her first open heart surgery when she was 1 week old, he cried and held me. Ella brings out more emotion in him then I have ever seen in our entire 6 years together. We waited for an update, and it didn't come, He was worried. When we finally got a call, an hour after we were due for an update, they told us that somebody was going to bring us to the consultation room and the surgeon was going to come and talk to us. We knew something was wrong, the surgery was supposed to last several more hours. We waited to hear and Jon was more worried then I had ever seen him. We thought we were going to lose her. We prayed together. The surgeon told us that things hadn't gone as planed and that he had ended up doing an experimental surgery that he had never tried before. Her lungs were too sick, he told us this should buy us some time and that we needed to start the transplant route. He also told us that she had crashed on the way to the operating room and that if they hadn't have done the surgery right when they did she may have died (talk about God's timing!) he also informed us that he wasn't sure, but her gut may be dying, that had just happened recently to one of his other patients. I asked him what would happen if her gut died, he said "she would die".

Well at 2 weeks old they told us that her lungs had healed a significant amount (by God's grace) and they wanted to try the surgery again instead of the transplant. It was a success! I can honestly say that without Jon's sacrificial care for Ella, there is no way she would have thrived as well as she has. Jon began to work with her on sucking a pacifier so that she wouldn't lose the ability to suck, because of his work Ella was only on a feeding tube for about 3 weeks. Jon was present at nearly every doctor and surgeon round. Up to 3 times a day, He only left her room for the bathroom or shower, or a quick bite to eat down the hall.

Jon got to take his little girl out of the hospital for the first time when she was exactly 1 month old. As Jon drove we got honked at 2 or 3 different times he was going to slow for the people in a hurry. This is funny because he is always speeding, but he had his little girl in the car for the first time and this time was different.  I find it so adorable that he was nervous to drive her. He got us settled in at the Ronald McDonald  house and was off for his first diaper run. He has been an amazing dad everyday. Since then we have had to watch her go through another open heart surgery and still have one to face, but Jon is a continual source of strength, for us both. Ella so very dearly loves her daddy!

Jon has gotten up with Ella every single night with me during her night feeds, and when I quit pumping, he got up and fed her so that I could rest and recover. He still gets up with her in the night when she needs a drink. I told him that I felt bad that he got up all the time and told him I felt like I should do it especially because he works SO hard all day. He told me he liked doing it because he doesn't get to see her all day like I do. Isn't that the sweetest thing ever!! What dad chooses to lose sleep just because he gets a chance to spend time with his baby girl? As I have been writing this he has been playing with Ella, feeding her, coloring in her princess coloring book and helping her "baby green" go down the slide. If it was possible to express fully the amount of amazingness (yes I did just make up that word) that he is as a father, I would, but it's just not possible to put into words. Every morning and after every nap Ella wakes up calling for "daaaaaddyyyy" I go to get her and she asks for daddy, I tell her he's at work. Every evening when he comes home she hears the keys in the door and she gets SO excited and yells "Daddy HOME! Daddy HOME!!" From the time he walks in the door until the time she goes to sleep she is his shadow. Honestly I can't think of anyone I would rather her look up to. If she turns out like her daddy I will be so proud! Jon is our hero, Ella will someday be able to better understand just how much he loves her, but I think the way she looks at him and follows him all around says it all! 

Jon, Thank you for who you are as a husband and as a father, we are so blessed to have you. You have saved us both countless times. I feel so much of God's love as a father through you! Thank you for you constant sacrificial love a devotion to our family. We love you more then words! Happy Father's Day to the most amazing daddy in the whole world!


Tuesday, May 22, 2012

Great report!



I just have to start this post with a huge PRAISE THE LORD! Ella had her cardiology appointment yesterday. It was the first appointment we have had in 6 months,  which is the longest we have ever gone between appointments by a few months! We heard such wonderful news! Ella is "doing better then any hypoplast at this stage that he's seen!" Giant squeeeeeel! This is amazing because he is the most experienced cardiologist in Oklahoma and Ella has a complicated case that makes her higher risk!

Also our sweet sunshine weighs 27 1/2 lbs. and is 33in tall!!!!!!!!!!!!!! That is in the 80th percentile!!! He told us " heart babies are usually small babies, we just don't see babies here in the 80th percentile!" The whole appointment was filled with "guys she looks just great" and "I mean really fantastic".

Not only is Ella in the 80th percentile of weight and height, but she has done this all by mouth, she has only had the feeding tube after the norwood and glenn for recovery!! Most of these sweet babies struggle with eating so much that they have to have most of, if not all, of their feeds by tube. We have been so very very thankful for this gift!

 Also, Ella's oxygen  had been in the low 80s, which is just fine, but lately on our home monitor she has been upper mid 80s. Yesterday when they checked her she was staying right around 88-89 and even hit 90!!!!!!!!!We are amazed and humbled by her AMAZING journey!!

Ella usually has SEVERE anxiety with all of her appointments, I mean literally shaking badly and full blown anxiety attack. Yesterday when we walked into the room where she is to be weighed /measured/ blood pressure checked/ oxygen/ heart rate, we braced ourselves for the usual melt down and Ella surprised us all by happily stepping on the scale and standing still with a slight smile, we moved on to have her stand against the wall for her height where she stood with slight concern while the man lowerd a board on her head but still no tears or "all done's", then we moved on the checking her oxygen, thinking to myself "this one shouldn't be too bad since we do this at home all the time", then I saw that they had a big plastic clip to put on her finger verses the small soft cloth that wraps around her fingertip at home. I thought "oh boy this isn't going to go well" I said "can mommy put this pretty on your finger?" she slightly hesitated, and then, like a big girl she went for it... no tears, just curiosity. Last of all was the blood pressure cuff, in other words her enemy. She HATES the blood pressure cuff. Well this one was too much, she started to cry and say "all done" we tried forever to get that stupid machine to work, but alas it was taking too long and the blood pressure cuff had to come off without a reading. But she never lost control like usual, she just continued to ask us to take it off as she cried. (side note, today she is playing with my knee brace and wrapping it around her leg and saying "pressure" )We were SO very proud of her being SO brave!

Next we moved on to the room where we had to have her EKG. There were some tears again with the cold gel stickers, but once the EKG was in progress, pictures on my iPhone of Ella kept her occupied (she sure does like to see her own pictures hahaha) then when it was time to take them all off, more tears... those stick very well and they hurt, but she was still very brave and thankfully it was done quick.

Next we visited with the cardiologist, he was very impressed and asked if we thought Ella would be up to doing an echo, because these kiddos at this age sometimes have to be sedated for Echo's because it's hard to get them to be still and not cry. We said we thought she could do it, and so we went to the echo room. She wasn't thrilled about laying down on the table, but I laid beside her and bribed her with my iPhone (thinking it will be a lifesaver for future visits :) ) Again I started her birthday video that her uncle Brandon made for her, and she laid there like a big girl content watching her life flash by in pictures. As I laid by her side watching her pictures and giving each picture an animated narration, I was thankful for how far we had come, God is so good!

After the echo was finished and reviewed, it was another visit with the cardiologist. More good news, "the echo looks GREAT guys"!! I was able to ask all my questions that had had written down to bring with me (yes I'm THAT mom) He was patient, and thorough when answering every question. He told us that Dallas would like her to be about 30lbs for her next surgery. Since she is almost there he told us he would text her surgeon in Dallas and let him know how great she looks and give him all the details that He will need to make the decision on when we will be going in for her next surgery. Because of how well she is looking her cardiologist thinks we are looking at next spring/summer but although unlikely it's possible to do it this fall if the surgeon thinks it needs to be that soon. That will give Ella time to get bigger, the bigger the better as long as her heart can stay strong until then! Her next appointment is going to be in Sept/Oct. he told us we could wait another 6 months, but we want to get her seen again before the flu season hits and also in enough time that if we have to go in for surgery she would, Lord willing, be out before the flu season hits (they don't want these kids in the hospital during the flu season if at all possible). So unless for some reason she can't make it to next year, we are looking at about a year until we have to go back!!!!!!!!! As ready as we are just to get  this last "scheduled" open heart surgery over with, we want what is best for her, and we are just fine with waiting.

We also got permission to.... drum roll please... start entering the world with her!!!!!!!!!!! I told him that I was concerned for her to get sick since she has been healthy for the last 21 months, he said "she looks so strong, I think she will handle it great". I told him of my fears of her sats dropping into oxygen distress ranges as with her 2 ear infections that she has had. He said he wasn't worried, and since her sats are so high right now she will be fine if they drop some. We are so excited to begin life with these new freedoms, but we are scared too! So for now we ask for your prayers for wisdom and protection as we SLOWLY begin the process of allowing her to get sick :( We will not purposely let her get sick of course, and she will still be sheltered some until  after her Fontan... who am I kidding, I think she will always be a little bit sheltered! hahaha.

So for those of you that will begin to see us more, remember that just because we are out does NOT mean that Ella should be touched ;) Also if you or a family member is sick I ask no BEG you to keep your distance! This is a HUGE step and adjustment for us as a family, and even though we are thrilled, it will take some time.

 We have poured everything we have for the last nearly 3 years into keeping this miracle alive and well, learning how to readjust our thinking is going to take time. We ask that you spare your judgement, and cover us in prayer and support. Just for the record if you feel the need to walk up and touch Ella without permission you may just get a fist in the face or a foot in the pants :) We will not be comfortable for quite some time, but just like every other hard choice we have made to protect her up until this point, we will continue to make the hard choices for her.

We aren't in this to win a popularity contest, we are just trying to be the best parents we can possibly be to the amazing gift we have been given. As we take our time easing into this new lifestyle, we ask that you don't push us to move faster then the pace we set. We ask that you don't take liberty to "help" us into the world by making us uncomfortable on purpose. We need prayers for strong immune systems, and strength.

Seeing my baby sick is going to break my heart. I will question our decision to have let her out, I will feel like a bad mom. I know the truth is that letting her test her wings (with the cardiologist's approval) is not being a bad mom, it is actually the best thing for her. I am truly EXCITED to see her become all that God has created her to be, and I know that every decision we have made to protect her up until this point is absolutely worthless if I can't trust God with her now. Her cardiologist thinks she is "so strong", he has faith in her ability to face this world and as her biggest cheerleader I will choose to let her live a full life despite my fears! She deserves every chance she gets to have more experiences! I never want my fear to cripple my judgement when it comes to her care. We do have fear, but we also have common sense and MANY doctor's consulting when it comes to her, sometimes limits have had and will have to be set to protect her, but the older she gets, the more freedom she will get to push her boundaries and fly beyond expectation!

She is a "pioneer setting the way for the babies that follow her with her rare condition". We are proud of her and we know that she will provide hope for those facing this journey behind her. It is so surreal to think back 7 years ago she wouldn't have even had a chance. They would have told us that our baby girl would die and we would have left empty handed. Surgery wasn't even an option... wow. We are so thankful that science has come so far and that we have an amazing team of doctors at CMC in Dallas.

So dear, dear friends, please rejoice in all of your answered prayers and don't let up, she will be facing a new mountain as we really test out the strength of her precious heart. May the Lord's will be done as we trust Him in a new way this season! Blessings on you our sweet prayer warriors! PRAISE THE LORD FOR HIS GOODNESS!

Monday, May 14, 2012

Mother's Day 2012

Mother's Day 2010

Mother's Day 2011

Mother's Day 2012






I had a wonderful day celebrating being a mother! Truly being a mother is so amazing, better then I could have ever imagined. To have somebody love you, need you, want you, it's just wonderful! Ella is so big and she is a dream come true for this momma's heart. I never knew what my journey to motherhood would look like, I never knew what I would face as a mother. The fear of losing the little girl who really made my life feel worth while. Being Ella's mommy is perfect. The fear and pain that comes with being a heart mom is just a hint of this life compared to the JOY that radiates from her. Truly, I can honestly say, with my whole heart, that if I lose her, every single moment I would have gotten to spend with her would be worth it. I can't say what the rest of my life would look like, but no matter the future I am honored and blessed to be Ella Dawn's mommy. She is happy 99% of the time, she is ornery enough to be adorable and adventurous and obedient enough to earn my trust. She loves outside and all things girly. My wish as her mother is that I will help her reach her potential and help her to face this life that she has been given with an attitude of gratefulness and determination. Where she doesn't feel afraid to live, where she isn't afraid to die. I wish for her to know everyday is a gift, she is not better or worse then those who have a whole heart. She is loved by her maker, and He loves her dearly. The love I have the privilege of feeling towards my sweet Ella helps me trust God with her and my future. If He truly loves me the way the Bible says He does then the safest place we can ever be is in His will. I am human and I would die before I would purposely allow harm near Ella, how much more capable of Love is The perfect God who knows and created all? How grateful I am for that knowledge. Even though I will never grasp the depth of His love, just knowing it's more then my love for Ella let's me know it's enough. I hope you all had a wonderful mother's day celebrating! Never take being a mother for granted, it is a wonderful GIFT! Everyday should be lived to the fullest, make time to love on the little ones in your life, being a mommy certainly isn't the most glamorous job, and for Ella and I it is certainly not a job where I get to get out often, but the days are flying by and for me I love being a mommy every moment of everyday. Every sacrifice, every day that you spend in pj's, every time you miss a full nights sleep, every time you change a diaper, every time you clean up the same mess for the 5th time the same day, every time you read the favorite book again, it's all worth it, it's all a blessing, it's all important. I have seen too many mommy's with empty arms as the days were cut short. As my heart aches with each new loss I see nearly weekly it drives me to love Ella better. Not through fear of the future, but simply realizing the gift of today. Happy Mother's Day, may you Love deeper, this year as you enjoy the blessing of Motherhood!

Special Happy Mother's Day to My mom, you taught me how to be strong when life is hard. You are the only person that I have ever trusted to care for Ella, you listen when I need to cry through the fear of loss. You are the perfect example of letting go and yet still being there. You have been a rock to our whole family. Thank you for teaching me of God's love, for teaching me to love my daughter, thank you for homeschooling me, thank you for equipping me with the skills I have needed to survive since Dec. 20th 2009 when my life changed forever. Thank you for sitting with me when we thought I lost Ella to miscarriage, thank you for sitting with me when I was too sick to live at home, thank you for caring for me in the hospital stays, thank you for encouraging me to keep going when I was so weak I could hardly stand, thank you for coming with me and hearing the words "hypoplastic left heart syndrome" and "open heart surgeries", thank you for delivering the news that she only had a 20% chance to survive when I was too upset to make any calls, Thank you for coming to Dallas to help us for as long as we needed, thank you for being there when Ella entered the world, thank you for sitting with me when Jon and Ella had to leave for her surgery, thank you for taking the first picture of Ella's open eyes for me to see, thank you for helping me through the hardest things I have ever had to face. Thank you for your constant sacrifices, thank you for being the perfect "nana" You mean the world to Jon, Ella, and I. We love you dearly, you are our hero!

Friday, May 4, 2012

moments



Ella can make me smile and laugh and cry tears of joy and sadness all at the same time. I have been reading up on where Ella should be developmentally according to her age, I like to do that since she doesn't have normal pediatrician visits. I want to make sure I'm teaching her what she needs to learn. Usually she is right on schedule and even occasionally advanced. This time she was advanced in speech and a few other things that have to do with how much she knows, but physically she is a bit "behind". For instance it says she should be able to undress and dress by herself, eat with a spoon and fork, go up and down stairs alone, run. While she can go upstairs with help, going down seems to scare her. She can eat with a fork with help, but a spoon is just to messy since she is still eating thin baby food. I guess that brings up the question "why is she still eating thin baby food?" Well Ella still deals with a slight oral aversion and while she can eat several solids, she can not eat enough for it to be her main nutrition. Right now gaining weight for her next surgery is important, so we will continue giving her whatever she needs to pack on the pounds! I'm not going to worry about it, just going to keep doing the best I can to help her learn and grow as she develops new skills. Ella and I are getting more used to the medical alert bracelet. In fact she has asked to put it on several times and she has had it on for just about 24 hours straight as I type! She has been adjusting way faster then I thought she would. I see it and I have caught myself with a tendency to kinda look away or feel sadness and I choose to look and smile because she is my miracle... a bracelet does not define her. I guess most of you would think her scars would be harder to see, sometimes they are. One scar in particular makes me tear up nearly every time I see it. It's not the big one down the chest or the little ones all over her belly from drain tubes, it's not the ones in her groin area, it is the little line on her wrist. It was cut open with a scalpel for a necessary access. They couldn't get the line in and had to cut her, for some reason that scar makes me ache. I can't really explain it. I guess I don't have to. I was sitting the other day thinking about some of the other dear sweet heart babies that are struggling, and all the sudden I remembered the time that I set holding my severely sick baby when she was less then two weeks old (I don't remember the exact day it was, when you are in the hospital 24/7 for nearly 30 days, time and dates seem to disappear) I was holding her when all of the sudden she crashed she would have died without instant assistance. Their wasn't even time to put her back in her bed, all the nurses, and respiratory therapist worked on her, they had to bag her (help her breathing even though she was already on the ventilator) My heart stopped and I sat helpless looking at my baby as her life seemed to be fading out of her body. tears streaming down my face I was paralyzed. Nurses tried giving me encouraging words as they worked so quickly, "she's going to be okay mom" "we're getting her, she's coming back up". They are trained to be fast and calm, I remember feeling like Ella didn't like me, that maybe I wasn't a comfort to her. The very first time I got to go see my baby at her hospital the day after she was born, I remember she cried and even though it was a silent cry, because the ventilator was through her vocal cords keeping her from the ability to actually make any noise. Still her sweet perfect eyebrows wrinkled up and her whispered cries were very obvious. I felt like she was upset that I wasn't with her, I thought that since I didn't get to hold her that she didn't know me. Jon had stood by her side the entire night and when he walked up to her and gently patted her she calmed right down. I was devastated that I couldn't fix her cries. When she crashed in my arms later the feelings that I was already dealing with all came down on me and I felt like even after 9 months in my womb she still didn't know me.  I remember feeling guilty that I didn't feel as strong of a connection that I had felt while I was pregnant it almost felt like she was a different baby. My pastor's wife, Jamy, told me that it takes some time and that I would feel that gradually. She was so right, it took a very short time before I knew that I had a connection with Ella and motherly instinct enough to drive the nurses crazy with questions and "demands" on how Ella was cared for. I hadn't thought about that moment in quite awhile, I have a feeling that more and more of these memories will slowly creep back into my memories as I allow them in. I still can't believe we have to go back... again. Just doesn't seem like I can do it, but I will. I will because every joy we experience is because of her previous surgeries and the future Joys we will experience as we watch her grow up will be because of the next surgery.


This picture was the exact moment she was placed in my arms for the first time (not the time she crashed) It all hit me at once that she was mine!


Tuesday, May 1, 2012

Father's Day contest!

Hey friends, I have entered Jon in a Father's Day contest. If you have followed Ella's journey you will have seen the amazing sacrifice and devotion he has given for Ella! He is our hero, the rock that keeps us steady. If you have time PLEASE vote for him by following this link http://www.ivillage.com/hot-dads-contest-0/6-b-435770#450073 He is the one with blonde hair on the swing with Ella leaning on his chest. The picture is titled true love beyond his years. Not many dad's in their 20's would sacrificially love like he has! Thank you friends! If you would be willing to share this with others who follow Ella's journey and ask them to vote too that would be great! Thank you all for your love and support. I hope this doesn't offend anyone that I am asking this, please do not feel like you have to vote, this is just a little something I want to do to show him how proud I am of him as a daddy! <3

Saturday, April 28, 2012

Life



Life is good, Ella is amazing. Everyday brings new words and facial expressions, new abilities as she discovers  more talents. Ella is getting so big, I see her everyday and if feels like she is bigger every time I see her.. Ella is 34 1/2 inches tall and weighs 25 lbs. she is 20 months. According to the old wives tale if you double a child's height when they turn 2 that is roughly the height they will be full grown. Ella still has 4 months to grow before she turns two and she is already nearly 3 ft.!! Oh my, I may have a 6ft. daughter some day :) She will be tall and beautiful! I am so grateful that she is growing so well, eating was a bit of a challenge in the beginning and still is from time to time, but over all she is doing fabulous. We purchased Ella's first medical alert bracelet. When I went online to order it, I felt sad that they had to make medical alert bracelets in a toddler size it didn't seem fair. When it came in I looked at it and didn't think it would fit it seemed so tiny, but it fit perfectly. It looks so small, it breaks my heart. It's not like I can ever forget about her heart defect, but something about having to wear a bracelet all the time feels like I'm branding her or something... like she is "tagged". It's hard to see it on her tiny yet chubby wrist. I am taking it slow, and easing her into wearing it. We are starting with wearing it when we go "out", not that we really go out much, but we like to take drives around town just to get out of the house sometimes and she would need it if we got in an accident. She doesn't like it anymore then I do, she will play with it, but if I try to put it on her wrist she cries. I have to remind myself that it doesn't define her just like her scars don't define her. I have to remember that even if their were no outward signs like blue fingers, toes, and lips, her heart would still not be whole and it would still be broken. This is life, it is going to be normal for us someday. At some point down the road maybe a tiny medical alert bracelet won't bring tears to my eyes and sadness in my heart,  maybe someday I'll be better at this whole heart mom thing. I have to try, to continue to not only except it but to embrace it. I have to be able to face it and not avoid it, other people in my life and in Ella's life will have the luxury of walking away if it is too overwhelming, they won't have to stay if they feel uncomfortable. Ella, Jon and I will never have one moment for the rest of our lives that this isn't in the forefront of our minds. I have to be strong because I want Ella to be strong. I want her to feel normal, I want her to see her medical alert bracelet and think of it as a safety device, nothing more. I want her to get excited to order a new fun color, not cry  that she has to wear one. I'm not going to pretend to know what she will feel, and I expect that she will have many many days that she feels sad, or angry, because of her limitations/daily medications etc. but I'm going to do everything in my power to help her approach life with the attitude that life is worth LIVING, that she has a second chance to live her life. I want more then anything for her to live without constant fear and feeling sorry for herself, I want her to know that she is STRONG. She has come so far and beaten so many odds, she is a fighter, a survivor! 

Tuesday, April 24, 2012

More videos



http://www.youtube.com/watch?v=COAfBq4ebdo&feature=channel&list=UL

More cute videos on YouTube! Search "amyladawn" :)

Monday, April 9, 2012

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"

Wednesday, March 28, 2012

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! :)

Friday, March 23, 2012

pictures as promised! :)

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