Pictures!!

 

I'm so behind on pics, but I can't wait to share all Ella's cuteness with you! We are doing well and Ella is counting down the days until Christmas with her countdown calendar that my grandma use to  let my sisters, me, and our cousins play with at her house! She is LOVEING it!




























4 years ago on Dec. 8th we found out we were expecting we were SO excited, then on Dec. 18th we were told it looked like I was miscarrying, but 4 years ago today, on Dec. 23, we went in to have an internal ultrasound done to check for a heartbeat. Although we were too early to hear one, she was just big enough to show us the tiniest flutter proving that she was, in fact, ALIVE! I was so sick, and SOOO happy! We commented then on how strong our baby's heart was, not knowing she would only have half of a heart. Despite the half of a heart, the statement we made then is even more true today, she has the most beautiful heart!!! I love celebrating anniversaries of how far she has come!

 The little white spot in the black circle is my baby 4 years ago today, the day we saw her heart beat for the first time! I think she was the cutest spot ever :)

 

 

Now to get you caught up on allll the pics!

 

First up is Ella's first trip to the salon to get a haircut! This was in July (I think!)

She was so brave and not at all afraid! I was impressed!

 

Then Jon and I celebrated our 6th wedding anniversary on Sept. 14th!

 

Then before the flu season hit too hard we took our little Sunshine to the zoo for the 1st time!!

 

Her favorite were the clown fish because she thought they were Nemo :)

She wasn't too crazy about the big seals in the aquarium (she actually still talks about the "big seals are too scary for me") haha but she got right up close to this black bear! 

She couldn't wait to see the elephants!

I love watching these two together!

My oldest sis even came with her four girls and Ella LOVED seeing her cousins!

 

We had such a great time!

Ella just being adorable before church one Sunday, showing off her new outfit!

Then on Oct. 14th we celebrated Jon's 29th Birthday! The cake wasn't the prettiest cake I've ever made, but it was my first by scratch cake and it was the most delicious, moist, dark chocolate cake I've ever had! I was happy to make my man happy! (sorry if you now want cake!)

Daddy playing with Ella 

Jon got a grill for his birthday, he is loving it! He is already a grill master!

Then after Thanksgiving we started decorating for Christmas!

 

But then Jon spent a few days in bed from food poisoning (no, not my cooking lol) so we finished decorating another day.

Then we got to play in the snow with Ella for the first time! We had a blast!

                                               Our snow angel!

 

On the 18th we got dressed up, took some pics in front of the tree, and then headed out for our annual drive through Christmas lights! It was SO much fun!

Then we attempted a family self portrait in the dark... hahaha 

After driving for a bit, daddy opened the sunroof and little miss got a great view of all the lights (I assure you she was safe, as we were going about 5mph :)! I loved her little pigtails waving in the wind! 

On the way home we stopped and got some dinner to go and then headed to Starbucks for a treat, where she got her first cake pop! 

(it's decaf and we shared) :)

Once we got home we ran off the sugar rush!

 

 

 

Ella singing "Jingle Bells"

https://www.youtube.com/watch?v=SQfEteNCH4k&feature=c4-overview&list=UUqKCKQyW3mRs28wxQpvT3iA

 

Ella singing "We wish you a Merry Christmas"

https://www.youtube.com/watch?v=ADScjxYAkY4&feature=c4-overview&list=UUqKCKQyW3mRs28wxQpvT3iA

 

Merry Christmas friends! We truly hope you take time to celebrate the birth of Jesus this Christmas!His birth, life, death, and resurrection is our hope!

Always Giving Thanks

With tomorrow being thanksgiving everyone's thoughts tend to lean towards things they are thankful for. Sometimes I feel like everyday is a reminder to be thankful just being with Ella and seeing her scars and her once blue lips and finger tips now pink, her future unknown. I never want to lose that perspective, because it is a gift and a beautiful way to see life.

This morning as my little sunshine was dancing with me in the living room the Christmas music playing, the fire warm and toasty, she in her bright yellow tutu, green glittery fairy wings, pink dress up gloves a size or two too big, messy hair and still in her jammies, I just felt blessed. Not because tomorrow is thanksgiving, but because it's another day with her.

Ella is doing well, she is a little more spunky then before ;) but 90% of the time she is being sweet and adorable so I guess it's fair for her to throw a few fits here and there. Honestly the few big fits she has thrown are probably small in comparison to most kids, but it seems so out of character for her that I usually have to use all my might to contain my laughter because it's so funny to see her act that way! I know I know, I shouldn't laugh, but even her fits are kind of cute hahaha. Her constant "Mom, I love you"s and "You're my best friend in the whole wide world"s and the "You're the greatest"s followed by random kisses and hugs all day, well you can see why she makes me love being her mom despite her spunky side ;)!

One of the main side effects from all of Ella's time in the hospital that we are still dealing with is her oral aversion to mixed texture foods. She can eat solids, but doesn't eat enough to make a meal and if it's a mixed texture she usually can't eat it. Up until being post Fontan we didn't push her because she needed to gain weight for her surgeries. Now that she is past the Fontan and weight gain isn't as important as before, we want to try to work more with her on eating solids and mixed textures. Last night we attempted our first try at pushing her a little bit, and it was so hard! Bless her heart, there were tears and LOTS of gagging, some small vomiting and we only got a very small amount down. This will be a slow process to avoid causing further trauma to her and we would greatly appreciate your prayers for her and us as we try to start working through this.

This last weekend we got to celebrate thanksgiving with my family for the first time since Ella was born! It was so fun to be there together,even if I was stressed out a little lot!. This is a transitioning time for us and is bringing its own set of challenges and fear. We are so very thankful that God has blessed Ella with good health so far and we know we can trust him to continue to watch out for her, we just need to learn how much to protect her, it's a balancing act and a new season. It will take time to reprogram and grow with our girl to see what her body can and can't handle. It will be a bit of trial and error and that is scary to me. I have to continue to remind myself to trust, trust that God IS in control even if things happen that I don't like. Even when Ella gets sick, even if we lose her... My ultimate fear in this journey with Ella's heart is losing her. I can't dwell on that reality, I have to cling to the hope that when we face that, we have the hope of eternal life together. Not only that, but I have to trust that God works everything together for good... even death. The responsibility of a parent to teach their child to love and accept Jesus into their hearts is heavy, but also a joy! What a privilege! Lord, may you give us wisdom to raise Ella to love and serve you with her whole heart!

This thanksgiving as you gather around the table with your loved ones I pray you have a blessed day and a thankful heart throughout the rest of the year. I pray that as you go through the days of life, of mundane, of spunky toddlers, of bills, of trial, of sickness, of loss, that you still see the joy, the love, the hope for eternal Life through Christ Jesus. Happy Thanksgiving friends, lets continue to grow together, to choose thankful hearts all year long!

Life's happenings!

We FINALLY have our computer up and running as of last night thanks to my dad and his hours and hours of work on it. I have missed blogging so much!! I have a camera full of pics. just waiting to download to share here, that will be done soon hopefully!

We have just passed the 5 month mark since Ella's Fontan, and she couldn't be doing any better! Her sats are stable and I never get tired of seeing those high oxygen numbers. She is usually between 84-92, she even keeps them up when running and playing!


This is the first flu season that we have been only semi in our bubble and so we are getting to enjoy our friends and church for the most part. It has been nice, and really hard at the same time. We are loving not being completely home bound, but trying to find a balance is difficult.

                            

Ella had to get 3 shots this week and she was so brave. After they were done we were walking out and she saw two nurses in the hallway and she smiled, waved, and said "hi! I got a shot" and she was just as outgoing as can be. She used to be terrified of anyone that wore scrubs. I'm so thankful that she is overcoming some of those fears!

Before the flu season hit too hard we took our sunshine to the zoo for the first time! We even met up with one of my sisters and her 4 girls! Ella is still talking about when she "went to the zoo with her cousins!" We had a blast! We saw lots of animals but Ella's favorite was the fish that looked like Nemo from the movie Finding Nemo :) I have lots of pics. from our zoo trip!

Ella also went to the salon and had her first professional haircut! Such a cutie pie! Can't wait to share those pics either! :)

We also took Ella to our neighborhood's fall festival! We didn't stay long and we didn't participate in any of the kid activities because of the germs, but Ella did get to roast her first marshmallow with daddy and that was pretty darn cute!

               

Ella's next cardiology appt. isn't scheduled until April 18th 2014!! Ya'll that's awesome! I still can't believe we are getting to go so far in between appts. It was supposed to be 6 months, which was already amazingly long, I mean I'm pretty sure the longest we have ever gone between appts. is 5 months and that has only happened maybe once or twice. So to have 6 months out is amazing, then add to that the fact that her cardiologist felt comfortable waiting 7 months to wait out the flu season was even more amazing! She has come along way from the 2-3 appts. a week when she was little!

Overall we are just living life and LOVING our sunshine! We can't thank you all enough for the constant prayers and support. I look forward to sharing all our fun pics with you soon and getting back to blogging more regularly! 

            

                       

                                        

 

This link is to a YouTube video of Ella singing Twinkle Twinkle Little Star :)
http://www.youtube.com/watch?v=7gYWj9SkmjQ&feature=c4-overview&list=UUqKCKQyW3mRs28wxQpvT3iA

This is a YouTube video of Ella reenacting a scene from Sesame street all from memory!!
http://www.youtube.com/watch?v=OUsMyxA-2Cg&feature=c4-overview&list=UUqKCKQyW3mRs28wxQpvT3iA

And this is the link to the YouTube video Ella was reenacting :)
http://www.youtube.com/watch?v=JGbhlU4tGg0

God is good!

I also wanted to post this link http://reecesrainbow.org/67947/sponsorshort and ask you to pray about if the Lord wants you to give towards this sweet boy's adoption. My dear friend, Erin, is the future Aunt to this little guy and they are super special to our hearts! Please lift them up in prayer as they are on the journey to get this little guy home! Erin and her husband are also in the process of adopting a little girl to add to their family of two handsome boys! Such special hearts to love these sweet bundles of joy, but it is not easy financially. If you do want to donate just click on the link to find out more about how to give and I know they will be blessed by your gifts and prayers and you will be blessed by their story!
 

4 Months post Fontan!!

Today is 4 months since we took Ella in for her 4th open heart surgery. It seems like forever ago because she has grown and changed and so much has happened since then. Ella is just doing so great post Fontan! We are excited to finally have stable oxygen levels, high energy, and a mostly pink girl! Of course this is not a "fix all" surgery, and Ella's future is still very unknown and she is high risk for loads of things, but we have been told that the next 8 years or so will most likely be the best years of her life so we are soaking up the moments!

 Life has been good, Ella is fully recovered from surgery as far as we can tell, she is full of energy and is back to her sweet self. She is constantly saying the cutest things and keeps us laughing. Today she helped me make some pumpkin muffins and asked me if we could dance together, of course we had to slow dance in the kitchen because moments are precious and time spent dancing with her is time well spent. She is really into holding hands lately which is pretty much the best thing ever! She goes potty all by herself now and she is still always giving lots of random hugs and kisses and "i love yous" out to us. We have a happy little family, blessed beyond measure. Jon and I often just sit and laugh about how amazing Ella is, how kind and smart, funny and imaginative, how thoughtful and sensitive, how neither one of us can ever get enough of her, how she breezed through the "Terrible twos" and so far has only had a very small amount of fits "as in I could probably count them on my fingers" her whole life, most of which came right after open heart surgery and a move that happened back to back. Seriously she is AMAZING! She must have had a dream a few nights ago about her surgery because when Jon got her up that morning she pulled up her shirt pointed at her scars and started talking about the details of her hospital stay. It broke my heart when he told me all the things she said, but I was thankful she didn't seem upset by it, just told the story exactly the way it was. She has come a long way from the crying nightmares that were so bad at first.

 As we have entered the flu season we are nervous! It's the hardest/scariest time of year for a heart mom. Ella has had one cold and she had Roseolla a few years ago, but, by God's grace, those are the only illnesses she has ever faced. Both of them hit her pretty hard. She is bigger now and stronger and she has a higher oxygen baseline then before, so we are hopeful she could fight most illnesses that might get to her, however this is new territory for us and we really are scared to find out how she will do. We know sickness will be harder on her then the average "healthy" child, but we don't know if it will just take her a few extra days to heal or if It will be bad enough to put her in the hospital, or worse take her life. We ask that you do what you can to keep Ella and others like her safe. First please get your flu shot! No, it is not 100% effective but it DOES make a difference. Please WASH WASH WASH your hands, so many germs are preventable if you use proper and frequent hand washing techniques. Remember to cough or sneeze into your arm not your hand. If at all possible stay home if you are sick, if you have to go out, be mindful of those around you and do everything you can to keep your germs to yourself. Lastly, if you see us in public, please don't touch us or Ella. As much as we love you, we don't love your germs ;) You may feel just fine, but you can still be carrying a sickness or disease without knowing it. 

I realize Ella will get sick, and probably sooner rather then later. We have fought to save her life and to protect her life so that she could someday fully live this life God has given her. We have received criticism over the years on how we choose to care for Ella, especially in the germ department, but so far we have truly felt The Lord leading us in our decisions and looking back we have seen over and over again how those decisions may have very well saved her life. We are so thankful for those of you who go out and get the flu shot, for those who remember to keep some distance to make us more comfortable. Trust me, it's not easy making the choices we have to make for Ella, it is especially difficult during the flu/holiday season, but she is worth it, worth it all. We ask that you remember to pray specifically for strong immune systems and good health for our family this year, and as always wisdom as we continue to do the best we can raising this miracle blessing. We thank you all for continuing to pray for us, even when I don't update as much as I used to! Your support and prayers make a difference!

                    

           "I'll love you forever, I'll like you for always, as long as I'm living my baby you'll be!" 

                                   

   I got Ella up from her nap and wanted to surprise her that daddy was home from work, so I asked her "who is your best Friend in the whole world?" her answer, "dad!" I said "guess what? Daddy's home from work!" That was followed by a happy surprised look and a cuddling on the couch watching toons. :) I love them together! 

Update on Ella's appt.

I still don't have my computer yet, but should have it back soon thanks to my dad for working on it! 

Ella's appt went well, she has gained a little weight and is almost back up to her pre Fontan weight! Ella chatted it up with everyone and was pretty good during all of the tests. The tests all looked so good we don't have to go back until the beginning of April, unless we have concerns before then. That is nearly 7 months!!!!! That is by far the longest we've ever gone between appts., so we are thrilled about that! Ella's appt. was on the 13th which is also the same day 3 years ago that we brought our baby girl home for the first time! It was neat to drive that same drive three years later to the day and just think about life then vs. life now. Ella did have a nightmare last night, but they are far less frequent then before. Overall we got a great report and Ella is doing very well! Praise The Lord! 

Jon and I celebrated our 6th wedding anniversary on the 14th and got to go on a date while Ella got some much enjoyed time with Nana! Ella also got her first big girl haircut at the salon! She was so brave about it all. I'll try to post some pics once I get my computer back! Jon also took Ella on her first "daddy date" and oh my goodness they were cute! he took her to get ice cream and then shopping where she got candy, jewelry, and a new hair bow! Ella is really blossoming in her personality, and I love sharing her sunshine with others and seeing the happiness she brings to them!

As hard as it is to believe that it's already that time of year, it is mid September and it's FLU SEASON. I heard today that there have already been some cases of the flu in the city. We ask that you PLEASE get your flu shot, if not for yourself then for all of those around you that the flu could be fatal for. Also if you are sick, stay home. Another thing you can do this season to help you and others stay healthy, is to remember to wash your hands often and use your arm to cover a cough not your hand! 

We really appreciate your continued prayers, especially during the flu season and as Ella is being exposed to more germs then before. We know that something can go terribly wrong at anytime with Ella, so we always cherish your prayers. 

Heading to Dallas on the 13th

Sorry again for the lack of updates. All is well with Ella! Our computer was hacked and is needing a pretty major rehaul so I don't have an easy way to update right now. 

We will be heading back down to Dallas on the 13th to have Ella's next check up. We don't anticipate any complications, but we will be dropping one of the doses of lasix she is currently taking on the 6th. At her appt. she will be getting some x-rays to check for fluid build up in her lungs. Please pray with us for strong lungs and no fluid! Also, as always, we ask that you pray for safety in our travels to and from Dallas, and also from germs while we are there. 

I'm so proud of Ella! She is a remarkable person. As she grows I am starting to see glimpses into the girl and woman she may one day be and I am humbled. She has so much strength and she is so smart, she isn't afraid of others, and she is kind. I know God has already used her life in great ways, but I can't help but think about the possibilities that He may have for her future! As her mom I feel the weight of the responsibility that is ours as Jon and I seek to raise her to be the woman God has created her to be. We know that God is the reason she is doing so well. It is ONLY by His mercy and grace. 

She can now count to 30 with only a little help, can do very simple addition and a few other early math equations, knows all of her letters and sounds (mostly), knows all shapes and colors, can undress herself and mostly dress herself, she is day potty trained and mostly dry at nap, she is eating so many more solids since her last surgery... Etc. the list goes on and on and she just turned 3 last month. I am in awe of just how far she has come.

I am enjoying Ella growing up so much and at the same time missing her as a baby. She was such a wonderful perfect baby! Always smiling, happy, content. Now that she is older and has so much energy from surgery she isn't always as easy as before, but still happy and wonderful, just in new ways. My mom always taught us to treasure every age because they all are special in their own way. That is so true. Ella may not be as easy every single moment of everyday as she used to be (although I can honestly say she is still a VERY easy child), but it is so rewarding to have a conversation with her and to hear her heart and mind. They aren't long detailed conversations, but they are enough for me to get to know who she is and how she is feeling. I love that about this age. We have had more moments of disapline then before, but with that comes the strengthend relationship when the lesson is learned. The chance to snuggle after the hard part of the lesson. To confirm my love for her and to see her love for me grow. She told me the other day in the sweetest voice as I was cradling her and looking into her beautiful eyes "I'm not a baby anymore, I'm a big girl Ella" oh how true that is. Of course she is and always will be "my baby", but she is no longer a baby. 

Thank you all for continuing to pray for our Sunshine! 

Ella is 3!

 It's been a long time since an update, sorry about that, life has been busy! We moved into our new home on August 8th and we are loving it here. Ella has adjusted so amazingly well! August 9th we celebrated our miracle's 3rd birthday and it was just SO much fun! Before I post all the birthday pictures, I'll give a health update.

Ella is doing better then I could have imagined. She is having no issues at all. We are loving being post Fontan! Ella's energy is amazing. We knew that she was supposed to feel better post Fontan but we also knew that with her mystery problems she may have been much worse post Fontan. My girl who used to just walk across a room pick up a toy and walk back and desat is now able to walk until I wear out bending over to pick things up constantly. The other day I took her for a nice long walk outside and she never once got tired or turned blue. When I got her home I checked her oxygen level just to see what it was after so much activity. She was at 85! The other day I checked her at complete rest and she hit 96!!!!!!!! By far the highest I've ever seen her oxygen level!

 She is for the most part hanging around 88, which is perfect. The other day she looked blue to me so I felt her hands and they were really cold, once she started running around she warmed up and turned pink again. I told Jon, that's the first time activity actually made her pinker!! :) We go back for her next check up on Sept. 13th and since Ella is doing so well we get to drop one dose of her lasix starting Sept. 6th. Ella did have 3 shots yesterday to start catching back up on her immunizations and her little legs are really sore, but she is a trooper.She also had her first trip to Braums after shots and it was such a fun moment! Ella hasn't been many places, and starting to step out into the world a little bit is scary, but going for ice cream was worth it! Once we got home she was extra cuddly so we snuggled up and watched "Finding Nemo". I loved the cuddle time.

 Overall we truly couldn't ask for more, God has once again blown us away by the results of this most recent surgery. We are excited for her future, and we pray it's long and full of life!

Now on to the fun party pics! 

             (Last pic with my 2 year old 2013)  (Last picture with my 1 year old 2012)

We always sing happy birthday to her as soon as she wakes up :)

Ella's cake was donated through the Icing Smiles Organization! This cake was done by https://www.facebook.com/SugarBakersOK she did such a great job! We are so thankful for her kindness to our family!

 It was so much fun to watch Ella really interact a play with other kids!

We had some special heart friends that we were so happy to see! 

 Ella got to hold a baby for the first time!

We took the opportunity to take a pic of all the grand kids and their favorite Nana! 

Happy 3rd Birthday Sunshine, you really do make everyday SO much brighter! 

Thank you all for continuing to pray for Ella's heart to stay strong, for her immune system to be strong, for her other organs to hold up despite the hard blood flow, for good results at her upcoming appt. and for wisdom for Jon and I as we make decisions for her now and in the future!

I owe you an update!

So much to share! So many pictures, but I don't have Internet right now so it won't be today. Just wanted to let you all know we are here, Ella is doing well, and I will be updating with more details and pictures as soon as possible! Thank you all for your continued prayers! Ella had a wonderful 3rd birthday!