Ella's Journey

Prayer request.

2012-01-29T21:25:00.000-06:00

Ella has had some vomiting the last few weeks. We haven't been too concerned since she has had random vomiting since she was born. She had some bad gag reflexes due to the ventilator. about a month ago I really felt like we were finally making some major headway in her eating. In the big picture she has been a champion eater, but we have just had some minor hurdles to jump. Her vomiting is not consistent and she is already on acid re-flux meds. I am concerned because she is getting most of her meds, but not all of them. I checked her pulse and oxygen level earlier this evening and it was not it's normal. Her heart rate was in the mid 140's and her oxygen was in the low to mid 70's. We like her heart rate in the 120s and her oxygen is usually around 83, in fact her oxygen had recently been in the 90's. So these numbers are certainly unpleasant to see. I will be putting a call in the the doctor tomorrow, but please be praying that she is back to normal as soon as possible! She is acting happy and has no symptoms of sickness. We really don't know what this could be. Also she is teething so I'm thinking that could have something to do with it. I guess we'll just have to wait and see. Anyway we really appreciate your prayers for our sunshine. Watching her throw up is so sad, but as always she is all smiles as soon as she is done.

prayers please!

2012-01-21T13:15:00.000-06:00

We need some prayers for a germ free household!! I may have picked up a cold on an absolutely necessary outing! The man that I was talking to had a cold and he was in close proximity. Jon asked him to put on a mask, but I'm afraid it was too late. It has already been a few days since my exposure, and I have been wearing a mask, but each day I am feeling a little bit more like a cold is coming on. Still no congestion or coughing, but a little drainage/sore throat/headache. I am washing my hands, drinking lots of water, taking vitamins and staying away from Ella as much as I can. It may sound silly to you to take such major precautions and not even know for sure if I am sick yet. We have to be very aware of how we are feeling at all times, since we have had Ella it has been crucial to have early detection if we get sick. By God's grace we have not really been sick yet, so we are just praying this streak of good health will continue. Right now specific prayer requests would be that I am not sick and that Ella stays HEALTHY!!! Thank you all for the prayers!

RSV shots... again.

2012-01-13T12:43:00.000-06:00

Today is the day the home health care nurse will come, Ella will be playing and smiling and I will be dreading the knock and the door, letting me know I am about to see my daughter in severe fear. Ella will see the nurse's face and her eyes will open wide and fill with tears as she starts saying "NO, NO, NO!" Not in a bratty tone that makes you think she needs discipline, but yet a begging me to stop this person that is about to hurt her. She looks at me and then her daddy and then back again, trying desperately to communicate that this person is going to hurt her. It's as if she thinks we don't know and she can't say the words to make us understand! She clings tightly to my arms as she tries to get closer then she already is, all the while shaking with fear. Then as I lay her down she looks at me as if I have completely betrayed her. She gets her 2 HUGE shots that burn (so we've been told) and as I pick her up to give her comfort, she immediately forgives me and lays on my shoulder and sniffs as I rock and sing gently to her, doing my best to calm her racing heartbeat and raging blood pressure. She is worn out from the severe anxiety, stress, and pain she just went through. Her heart isn't as strong as ~~it was~~ ~~supposed be~~ we thought it would be. She doesn't have the stamina to cry like that for more then 15 minutes or so. She is hesitant to return to the living room, unsure of what may be awaiting her there. When she sees her daddy and mommy and no one else is in the house, she is sure she is safe. She resumes her playing and is in every way my hero. Please say a prayer for our Ella today around 3-4pm as she goes through this monthly appointment. Thank you.

Merry Christmas! Pics!

2012-01-03T15:35:00.001-06:00

Playing dress up with a scarf!

Brushing her teeth!

Favorite picture!

New baby!

night snuggles with daddy!

Christmas Morning!

Basking in the aftermath of the opened gifts!

Goofy girl!

So much fun with Daddy!

Football time!

Playing with boxes... best gift of all ;)

dress up!

Home sweet home!

Dates in Ella's journey

2011-12-15T16:01:00.000-06:00

It's been awhile since I started this blog and we have had so many new visitors! As of Dec. 8th, it has been 2 years since we found out we were expecting, so I decided to take this chance to review Ella's journey so far!

~ Dec. 8th 2009 found out we were expecting our first baby, we were about 3 1/2 weeks along.
~ Dec. 18th blood work at the doctor confirmed pregnancy
~Dec. 19th I began to cramp bleed and pass several clots this lasted 4 days. It was a weekend so I had to wait until Monday to be seen. The on call doctor told us that it sounded as if I was miscarrying.
~ Dec. 21st we went in for an ultrasound and blood work. I was 5 1/2 weeks. They told us not to be alarmed if they couldn't find the heartbeat, it wouldn't necessarily mean I had lost the baby. They told us it was very early to find the heartbeat and that they don't usually find it until 6 weeks. Unable to find the heart beat, they suggested that we do an internal ultrasound or wait another week. We did the internal ultrasound and miraculously they found the heart beat!
~We found out that my hormones weren't doubling properly.
~ Dec. 26th I was admitted to the hospital for sever dehydration due to vomiting.
~Dec. 29th I was sent home.
~Dec. 31st we rang in the new year in the ER again severely dehydrated.
~Jan.2010 We went to stay with my parents (God send) so that Jon could work and my mom could help care for me.
~ Jan.6th at 8 weeks pregnant Admitted into the hospital for severe weight loss, dehydration, and hourly vomiting. The doctor was worried that we may have lost the baby due to malnutrition. Ultrasound showed healthy baby despite the odds.
~ I had to have a PICC line (feeding tube) multiple I.V.s and blood work. Hormone levels started to double properly! Blood sugar crashed despite extra sugar in my TPN.
~ Jan. 27th made it through the first trimester, and after an ultrasound that showed healthy baby I was discharged. Went back to my parents house.
~ March 26 we were finally able to go home.
~April 10th we found out we were having our sweet baby GIRL and that she was a healthy baby!
~April 11th I got a call saying they though their might be a problem with her heart and that I needed to see a perinatal specialist. We had to wait 10 days.
~April 16th we were told our daughter had hypoplastic left heart syndrome. We were told she had a 75% chance to live, she would have to have at least 3 open heart surgeries in the first 3 years of life. We were given the "option" to "terminate" the pregnancy, that was NEVER an option for us.
~May 12th we had another ultrasound, we were told that Ella had an additional heart defect called a intact/restricted atrial septum. We were told we would have to leave our home state to deliver, that we may have to move all together depending on how she did. We were told she had only a 20% chance to survive.
~June 21st another ultrasound shows baby growing bigger and more beautiful then ever.
~ Decided that Dallas Childrens Medical Center was the place for Ella's care. Made the 7hour round trip to meet all the doctors and surgeons. We heard over and over that Ella had a very real chance of not making it. Three hospitals were all buzzing with the news of our daughters arrival.
~July 27th we packed our bags and moved into our home away from home at the Ronald McDonald House of Dallas ( Truly a blessing!!)
~ Days filled with doctor appointments
~Aug. 9th at 39 weeks pregnant We went in for the c-section (had to be c-section for Ella's heart) 3 surgical teams stood by, observation room full of students watching this "rare birth". Ella was born at 3:23pm. We got to quickly touch her hands, and she was off. They immediately put her on a ventilator and rushed her to the operating room.
~ First surgery was a cath surgery, it lasted 7 hours.
~ Aug. 10th I was wheeled to Ella's room to meet my baby girl for the first time.
~Aug.11th I got to hold my baby for the first time.
~Aug. 12th Daddy got to hold Ella for the first time.
~Aug. 16th Ella had her first open heart surgery. It did not go as planned and they ended up making the decision to do an experimental surgery that they had never done before.
~Aug 23rd Ella had her second open heart surgery. That night she crashed and nearly died. The doctors told us it was not good and he prayed with us. Immediately she began to make small improvements.
~Ella had several ups and downs, she had potassium pushed into the line straight into her heart by mistake, she survived. She took her first bottle, she was weaned off of the ventilator and oxygen.
~Aug 30th we moved out of the CICU
~Sept. 9th we left the hospital for the first time Ella was 30days old we went back the the Ronald McDonald House.
~Sept 13th we took our baby girl home for the first time.
~Nov. 17th Ella needed an emergency cath surgery in Dallas.
~Nov. 23rd we got to take Ella home again!
~Jan. 13th Ella had her 3rd open heart surgery.
~Jan. 22nd We took Ella home.
~Jan. 23rd Ella's sats dropped down to 51, we soon found our that her diaphragm had been paralyzed during the surgery she was placed on oxygen.
~Mar. 23rd Doctor told us that Ella's diaphragm had been healed without the need for additional surgery.
~ Ella continued to thrive and meet all her development milestones despite the hurdles!
~ Aug. 9th we celebrated Ella's 1st birthday.

Currently we are awaiting Ella's 4th and hopefully final open heart surgery.

Life for us has been different then we could have ever possibly imagined, in so many ways we have hurt. Our hearts have broken over and over again on this road. However just as many times as we have cried tears of sadness, we have cried tears of joy! We laugh more, smile more, and love more then we ever knew possible! Being parents of a special needs child reminds us daily that life is fragile, that it should not be taken for granted, and that at any moment it could end. It's a balancing act to live in our circumstances and be aware of reality but not live in constant fear. It isn't something that I can just pretend isn't real... it is something that makes nearly every aspect of our lives a little bit different then most. Yes, I cry... a lot. I fear... a lot. I PRAY... a WHOLE lot. But I love my life so very much! Truly this has been the most amazing journey for so many reasons. I have truly seen miracles as Ella's life has been miraculously saved multiple times. I have had many "only God" moments where I would need or pray something specific that God would give me an immediate clear answer, as if He was reminding me that He was in fact hearing my prayers and that I hadn't been forgotten. He once spoke a verse to my sweet friend Julie who then, not knowing that God had showed me that very verse in a desperate time, prayed it over us during a special moment where our Sunday school gathered around us to pray. Truly "only God", moment's like that are the ones that keep me going, that give me hope for the future. Honestly being Ella's parents and not being able to "fix" her, or take the pain for her, is excruciating! However, knowing that the only One who loves her more then we do is in complete control of her life certainly helps. Truly I have no idea how anyone could go through something so terrifying without God! Sometimes trusting that God loves me just as much as He loves Ella is a little harder to grasp... just because let's be honest, she is a whole lot more lovable than me :) But I know He loves me and cares for me, and that He will meet all my needs. Not a day goes by that I don't think about losing Ella. Not a single day. Some may say that is living in fear or just being negative, I say it's reality. I don't dwell on it or get depressed over it. I smile that she is here with us now, I smile that she isn't in the hospital, I smile that she is healthy. I pray and thank God for my baby's life, and sometimes I just look at her and cry. But over all I remind myself that if someday I lose her, God will walk with me. Does that make my heart okay... NO! Does this mean that I'm at perfect peace in my soul... NO! I can't hardly breath thinking about such a horrible thing, but I know, that's okay to have those feelings (Thank you Jamy). I know that God will give me the grace to walk whatever path he has for me when He has it for me. Just like when I found out about Ella's heart. Had you told me 4 years ago that I would get pregnant and experience all that we did in the above list... I would have said my heart couldn't have done it. But look where we are now. Living everyday moment by moment, not perfect by any means, but certainly ONLY by God's grace. May you find peace in knowing God is in control and strength by His grace this coming new year!

Merry Christmas from our family to yours!

Day we found out we were expecting.

Day Ella was born.

First time we got to hold Ella.

night before first open heart surgery.

post first open heart surgery.

post 2nd open heart surgery.

leaving the CICU.

HOME.

post 3rd open heart surgery.

Ella now! :)

Ella is OFFICIALLY walking for good!

2011-12-10T17:00:00.001-06:00

So as of Dec. 6, just three days before turning 16 months, it is official that Ella is walking!! I love it! She is walking better then she was in this video already! She is walking all the way across the room turning and walking some more!! Can't believe it! It only took 4 months from her first step to taking off! hahaha. Enjoy!

http://www.youtube.com/watch?feature=player_embedded&v=jDAjIQ-FFZo

Christmas Tradition!

2011-12-06T14:08:00.001-06:00

So last night we took our second annual trip to drive through a Christmas light display! We bundled up and headed out in our toasty car with Christmas music playing and big grins on our faces! Another year, another Christmas, another open heart surgery complete, another day together! My heart was bursting with Joy and thanksgiving! I couldn't help but say a prayer of thanks to the One who gave us our miracle! I don't update too often anymore and I'm sorry about that, but the good thing is that when there is no update things are usually going well! Life is in full swing, we are decorating the house, planning Christmas dinner, buying and wrapping Christmas gifts! Of course Ella is learning and growing faster then I knew possible!!! She is singing and and learning new words everyday! She says nearly anything I ask her too, she has been taking steps since the day after her 1st birthday and now nearly 4 months later she is still not "walking"! about 2 weeks ago she took 5 steps all by her self and even several more a few times after that, we just new she would take off in a few days, I even announced on Facebook that she was "walking!" ha. She made a liar out of me! However now she will stand up in the middle of the room all by herself, then look around and say "walk" then she will say "down" and sit back down, then I hear "up" and she stands back up, then "down" and she squats back down! lol up and down, up and down, but no walking... until yesterday! Twice she stood up completely unprompted and unassisted and said "walk" I said "come on Ella walk to mommy!" and she took a step, so maybe just maybe we are almost there! We've been thinking she would take off any minute for the last 4 months, so I guess she just wants to do it on her time! ;) That's my girl! Anyway I really don't mind, I mean I want her to walk and since it seems to be taking longer then I expected, I occasionally get a little discouraged that maybe I'm not doing a good job with her, but then I remember ALL that she has been through, and how AMAZING she is doing and just how FAR she has come!!!! Add that to the crazy emotions of "my baby is not a baby anymore" that I had when she walked for the first time, and I am content to see her crawl just a little while longer. :) That's part of the bitter sweet feelings I have at every new milestone that Ella meets, I have this overwhelming sense of pride at her accomplishment and all she has been able to overcome, and instant sadness that my only baby is growing up! Ella had a cardiology appt. the other day, and her heart is looking great! Her sats are staying right around 83%, our main concern right now is her CRAZY high blood pressure (160 over 99)! Her cardiologist isn't concerned, and just wrote it off as severe anxiety. I know she has bad anxiety at the doctor, but I'm not sure why it's just now affecting her blood pressure, when she has ALWAYS had a hard time at the doctor. He did raise her blood pressure medication, but still said we won't see him until March unless we have a concern between now and then. We'll see. We are into the dreaded flu season where we have to WASH and STERILIZE everything! We do not have visitors (even though they were MAJORLY limited before anyway), we stay as secluded as possible! Of course their are some who may think it's overboard... they (usually) don't have a child's life on the line. I have learned that as a parent, especially of a special needs child that some people are just plain ignorant. They say things and give "advice" that is just a lack of discernment and knowledge. It's hard not to take some comments personal, but it is very important to be able to let those comments roll off our back and realize the God chose us to be Ella's parents for a reason! We know her better then anyone, we know her heart, her limits, our life. We also know we will make mistakes, and we won't always make the best judgments. So with humble hearts we ask God for wisdom every night together as we make life changing and possibly life saving decisions for our sweet sunshine! We have had our flu shots, but since we may be looking at her next open heart surgery possibly as early as this summer, it's very important to keep her healthy. Because Ella's heart condition makes her oxygen level lower then ours, it is really hard on her when she gets sick, because even the smallest sickness or infection puts her at high risk for complications and possible hospitalization. As Ella's next surgery approaches her oxygen level will continue to slowly drop and as this happens sickness will be much harder on her. We know this is just a season. We will continue worshiping with our Church via the live feed online (we are so VERY thankful for technology!) Here's where we need YOUR HELP (if you're local)! We still have to go to the store and run necessary errands, so for the safety of Ella, if you see us, we need you to not come too close to us, even if you have the sniffles, you are a risk to our family. ALWAYS skip the hugs. ;) Just being aware is a great start! We covet your prayers for our family as we continue on this journey. We hope that by next winter, or the one after that, Ella will be strong enough to be around all the people we love more often! :)

Chilling watching some T.V.

Mommy caught you :)

Ready to go look at Christmas lights!

Don't forget the adorable hat!

One VERY blessed family!

Ella's got the wheel! (no worries we are going about 2mph.)

Back in her seat safe and sound ready for the drive home!

Family Pictures!

2011-11-19T14:17:00.000-06:00

Back in August, we had the privilege of getting our pics taken as a gift by Dejah Quinn http://dejahquinn.com/. She had donated a wonderful package to us for Ella's run! Here they are, hope you enjoy! Ella is such a fun baby!!!

Finally feeling better!

2011-11-17T15:41:00.000-06:00

Just wanted to stop in here and let all of the prayer warriors know that Ella is feeling MUCH better! She is still on her antibiotic for the ear infection, but she isn't running any fever and the rash is completely gone! I can't tell you how wonderful it is to see my sunshine playing again!!! She even surprised me and skipped her morning nap the other day because she was so happy and hyper! That made me smile! She had been so tired, it was good to see her with some energy again!! Also a big announcement... Ella walked yesterday evening!!! She has been taking a step here or there for the last three months, but really showing no interest. Last night she took a good 5 steps in a row and then took multiple steps more then once too!! It was awesome! I felt like I did the first time that she crawled, she is reaching a whole new milestone of independence. A whole new part of growing into the person that she will be. Achieving goals that we never knew if she would have the chance to learn. She makes us proud with her daily smiles and determination. Somehow I never knew how great this life could be, she is a joy! She is sunshine in the midst of life's difficulties and disappointments. She is a gift! One I will NEVER for one moment of my life take for granted. I know just as fast as she went from her first little thump inside my belly to walking and asking me to read her a "book" that life isn't going to slow down. Just as much as I wish I could hold time still to just enjoy it all just a little longer, I know that this will be the only chance for me to live these moments and so with sadness that they are passing I have joy that they happen and that the moments that we have together as she will grow and learn will be in my heart forever. I know she will continue to thrive and that she will continue to hit milestones that are going to make me cry. I cry tears of sadness of a season passing and tears of Joy with each new goal met! Ella Dawn oh how you hold my heart!! I love you more then all the words could ever say!

Update on my Ella...

2011-11-10T19:09:00.001-06:00

So Ella is still fighting the ear infection, plus cutting at least 5 teeth, and still running fever from time to time. She now has developed a rash (see pics below) covering her front and back and now creeping up her neck. Also she is just NOT feeling good, she just wants to lay in daddy or mommy's arms all day long. She will play for short amounts of time, but mostly just wants "up". She is laying down for her 3rd nap of the day right now (her first 2 were 2 hours each) after sleeping 11 hours straight last night. After talking to the pediatrician we have two things to think this rash could be. First off she may be having some sort of allergic reaction to the antibiotic, or she may have something called Roseola (google it). Some people have mentioned to me the possibility that she may just have a virus coming out in the form of a rash, and that her ongoing fever since Sunday may have something to do with it as well. As of right now we are putting a hold on her antibiotic for today and trying some Benadryl to see if it is the antibiotic causing the rash. If the rash continues to spread and does not go away, we will resume the antibiotic and just wait for it to run it's course. Luckily if it does happen to be Roseola, the rash is the last of it and is a sign that it is near the end. Right now it is a lot of if's and I am just ready for Ella to be better!! This has been so hard on her. We also had to take Ella to the ER Tuesday afternoon due to significant drops in her oxygen level. Ella usually sats around 83% with a heart rate around 125, when she is teething or has an ear infection her oxygen level usually drops to the upper 70s% and her heart rate generally increases to around the mid 150s. The drop in oxygen and the increase in heart rate is due to the pain she endures at that time. As long as the drop in oxygen isn't too significant and doesn't stay in the low 70's or lower for a prolonged period it is fine. Ella's oxygen dropped and was staying in in the low to mid 60's% This is alarming, because it is not supposed to be that low! After calling her cardiologist it was decided that Ella would be better off going to the ER vs. the clinic since it was at such a dangerous level. Jon and I were hesitant to take her in since other then looking blue she was acting fine. We worried that the germs/sicknesses that we would expose her too at the ER would be worse than going to the clinic and risking not having the faster care, but the cardiologist basically said if we didn't take her to the ER we were making the WRONG decision. So we took her in, she was evaluated and then she had another desat episode (her oxygen dropped) while we were with the cardiologist and he was able to see the low numbers and that she looked okay regardless. So he said to continue to monitor her at home and if it continues to happen we may have to intervene, but if it goes away with her ear infection, then it was just from the infection. Yesterday Ella seemed to act like she was starting to feel a bit better, but then later in the evening started running a fever of 101 again and then broke out in the rash, today she has not been feeling well at all again and the rash has worsened and spread up to her head and some of her face. :( We know that Ella is special and that everything that she experiences will be different then whole heart kiddos, but this is so hard to see. other then one other ear infection back in Aug. she has NEVER been sick. She has never had a runny nose or a cough. She has run a fever only once before with her teething when she cut three molars and her top two at the same time! So this is all very new to us. It reminds me that no matter how careful we are, we can't keep all the germs away from her. It also reminds me to keep up the good but hard work in keeping her as germ free as possible!! As of Nov. 1st, it is officially the DREADED flu season. Starting tomorrow Ella will begin her 2 shots (at one time) every month for the next 6 months. :( they are the shots to help prevent RSV, RSV is extremely dangerous for Ella. The healthcare nurse will come to our house, and Ella will know her face. She will cry and shake with fear of what is coming. I will have to hold her down as she gets a big needle thrust into both thigh muscles. It will be horrible. I am torn sometimes, I hate that my daughter has to have so many medications/ vaccinations... and at the same time I don't really have a choice. Of course I do physically have the choice to say don't touch my child, but for me vaccinations have always been about weighing out the pros/cons of each. I think with a healthy child there are some sicknesses that may be hard on them, but the chances that they would get them are so small, that the damage that a vaccine can cause may not be worth it. Well with Ella an ear infection put us in the ER... and some of the other sickness would end in death. That out ways the bad in my book. So as hard as it is sometimes to know what to do, I just keep praying and treading to keep my head above the water. Nothing like making choices that can save or take a child's life. Such is parenthood I suppose. The good news is no matter what God is in control, and I am just a small piece of all of this anyway. I am so grateful that Ella's fever showed up the very morning we were going to see her heart friend. I never thought that Ella could be a health hazard to anyone, considering that I have never seen a healthier child. But God was protecting Emma and the signs showed up in time to keep Ella away from Emma and all the other sweet heart babies in the CICU at CMC in Dallas. Just thinking about how close we were to possibly hurting one of them makes me sick at my stomach. Please keep praying for our sweet sunshine in this difficult time. She could really use a break soon, thank you all.

As for Ella's sweet friend Emma, she is OFF of the ventilator!!! HALLELUJAH! She was not supposed to live through the night a week and a half ago, but she is a rock star and God isn't finished with her yet! And we are so glad! Please keep praying for that sweet spunky darling!

Ella not feeling like her usual self :(

Ella's rash. (front)

(back)

Our Trip in Pics.!! :)

2011-11-07T18:30:00.001-06:00

Ready to go!

All packed in! She was perfect for the whole trip!!

After 10 hours in the car and only 2 stops other then gas refills, she was happy to stay in her first hotel!

Finally on the beach! This is a pic of us standing on our back porch!!

She was happy but didn't like the sand on her hands!

playing with the sand!

The first evening we were there we saw 6 stingrays swimming back and forth, literally just a few feet away from the shore. We also saw a shark further out!! :0

Our pink poodle for Halloween!

View from the master bedroom :)

Ella's new favorite game is talking on the "phone" It is SO CUTE! She says "helloooo?" "hi!" :)

night time on the beach!

My love <3

Dress from our dear friend Leslie Click!

Getting ready to play in the sun!

Sand castles like I used to make with my dad!

wearing mommy's BIG hat!

Chilling out!

Could she BE any cuter?? I think not!

Thank you Lord for this trip!!

We got to see several dolphins right out in front of our porch!

We had the most AMAZING time in Florida!! We had a hard time on the way home because on the first day of our trip home Poor Ella was so constipated I didn't even know what to do!! Poor baby was in so much pain, luckily with my mom and big sister's wonderful advice, a quick detour and a suppository later and she was better. Then the next morning Ella woke up extra early crying, when I picked her up she was burning up. She was running a fever. We gave her some ibuprofen and it broke quickly and we were on our way. We just assumed it was teething since the only other time she had ever run a fever was the other time she was teething. That had been about a month prior. The main problem was that we had changed our returning home route to include Dallas because we had planned on stopping in to see our friends the Stewarts. Since Emma is so fragile, we didn't want to expose Emma to anything if Ella's fever was more then teething. When Ella's fever returned right before we got to CMC in Dallas we had to bypass the visit all together. We were so disappointed. To make things worse Ella's fever kept climbing and ibuprofen and Tylenol together weren't breaking it. It reached a high of 102.9 last night before finally breaking this morning. It returned and broke and returned and now is staying around 100-101. We took her to the doctor and found out that she is teething, but she also has a pretty bad ear infection in her left ear. :( Hopefully the antibiotic will clear it up as soon as possible! It was good to be home sweet home though! Nothing like a sick/constipated baby in the car. She was so good, but it was breaking my heart. I'm just not used to seeing her with sad eyes. Even though she keeps smiling it is sad. We thank you all for the prayers for safety for our trip! We were so blessed by this opportunity to go to Florida for the first time! I wanted so badly to take a family vacation before Ella's next surgery, God is good to give us the desires of our hearts!! Please keep Ella in your prayers as she is cutting 5 teeth and fighting an ear infection, please also keep her heart friend Emma in your prayers as she is doing remarkable but still has to get off of the ventilator!!

In Florida on our first family vacation!!!!

2011-11-01T12:41:00.000-05:00

We are in FLORIDA enjoying our first family vacation!!! Loving the time and the weather is gorgeous! I will update with pics and stories when we get home, but for now please keep us in your prayers! Please pray for safety and good health for Ella, since this is the first time we have been far away from a good children s hospital and it is also the beginning of the flu season, so I'm a little nervous! So far so good, we feel so blessed to be here in this place with our 20% miracle! Thank you Lord for your MANY blessings!

Please also continue to keep Ella's heart friend "Emma" in your prayers as she is still fighting hard in Dallas. :(

Please pray for Ella's FRIEND Emma!!

2011-10-28T12:46:00.000-05:00

Emma had a cath surgery a few days ago and has since then been having complications. This is the update from Emma's mommy Sarah...

"Emma took a turn for the worst yesterday afternoon/evening. She had to be intubated because of her acidotic blood gases. The problem that we then had was that none of the traditional ventilators were working so we had to put her on an oscillating vent. The challenge then was to correct her acidotic blood gases. It took all through the night and into this morning to see some improvement. During all of this, her heart took a hit and is not functioning like it should. Things are very critical right now but Emma is still fighting so we are too! (they have her sedated and paralyzed). Please pray for our princess as she fights this uphill battle."... Since then this is what Sarah has said..."Emma is stable but not really making much progress. Her heart is not improving and that has us in a bad spot. She is still fighting but her body is really taking a toll. Please keep praying!"

This family is VERY SPECIAL to us. Emma is the ONLY little girl that we know with Ella's same two conditions. Sarah was an answer to my prayers when she wrote to me when Ella was in the hospital. She told me that she was about 2 months behind me in her pregnancy with a little girl named Emma that had been diagnosed with HLHS/RAS. I sat there in shock because the doctors had told us just how rare this combination was. I felt like someone finally would know how I was feeling! I was sad that they had that diagnosis, but I was grateful we would be able to walk the journey together. After Ella had been born and had done so well, we had GREAT hopes that Emma would sail through the surgeries as well. Emma has had a much more challenging path then Ella, for some reason. It certainly doesn't seem fair. We pray for Emma daily, we feel connected to her, we love her. Please Please pray for Emma right now, she is fighting hard for her life and we are grateful that she is stable, but we know she has a lot of healing that needs to take place. Thank you for praying!!

Life for Ella

2011-10-15T23:39:00.000-05:00

Life is GREAT! In fact I had to sit for a few seconds trying to think what word to use to describe it and well it is very GREAT! I think that the only thing that would make me happier would be hearing the doctors say "I don't know how this happened, but Ella has a WHOLE heart!?!?!) Oh how I long to hear those words. Wouldn't that be incredible? I prayed often before Ella was born that God would completely heal her heart and make it whole so that she wouldn't have to go through any surgeries. I still find myself from time to time praying for God to do what would only take a thought for Him. I don't know why He doesn't heal these sweet babies that I see struggle everyday, but we know that God is good and that He is just. We know that He has a plan far greater than we could ever dream or hope! Ella's daily life is as close to normal as I think we could possibly be at this point in her life! We have to be EXTREMELY cautious with her when we take her out to keep her healthy, but our life at home is very normal! She takes 2 meds in the morning and 3 at night, she sleeps 11 hours a night (unless she is teething, which she has just cut 3 molars, and 2 or 3 more...ouch!) she also takes 2 naps a day, usually 1 in the morning for 2-3 hours and 1 in the late after noon around 1-2 hours! So I can't really complain! Ella says too many words to list them, she knows lot's of animal sounds, she is always giving mommy and daddy kisses, and she loves to be "pretty"! She has had a lot of mile stones lately, she has given up the bottle for good, she is eating lot's of table foods, she has her new big girl car seat, and she is all but walking! She took her first unassisted steps 2 months ago, but now she just isn't too interested... and well that's just fine with me :) Too much too fast anyway. So as we are entering fall, everyone is so excited about thanksgiving, Christmas, and the cold weather... For a heart family it is the scariest time of the year. It is RSV, flu, cold...etc season. It is the season where you miss all your family and friends. I'm not trying to sound doom and gloom here, because we have a swell time just the three of us, but it is just something that people don't think about. You could get sick and feel yucky, my child could get sick and die. With Ella doing as well as she has so far, we began to wonder if Ella would handle sickness well, but so far she hasn't gotten really sick yet and just with a VERY minor ear infection her oxygen dropped into the mid 70's... she is usually around 83% If she gets below 75% and stays there, she has to be placed on oxygen, and that is NO FUN! So if her numbers drop that much without so much as a runny nose I don't even want to think about the numbers if she gets all stopped up. Also because of her heart, she can't take any kind of decongestants, so we would have a rough go at it if she got sick. Also when she has meds that her life depends on, if she has vomiting or diarrhea that is NOT GOOD. Also getting dehydrated is one of the worst things for a heart baby and usually if you get sick you get dehydrated. She would have to be admitted to the hospital for IV meds and fluids. So obviously it is crucial that she remain healthy. With that in mind, I will take this as an opportunity to plead with you to get your FLU SHOT! It could save Ella's life!!! We hope this is the last holiday season that is going to be so secluded, but we will just have to see. They say that after the age of two kids are not near as at risk if they get sick, however until Ella has her Fontan (4th open heart surgery), whenever that may be, she will have to remain in our protective bubble. So for now we will be aware of the risks that this season will bring, pray HARD for God's protection, and do our VERY best to keep our sunshine happy and healthy! Some more exciting news is that our little family of 3 will be taking our FIRST FAMILY VACATION!!! I am so excited and scared like crazy! We got the all clear from the cardiologist, and we are going to have the information to the nearest hospital that could care for Ella. We are going to Florida! It will be our first time to Florida so we are excited!! We also celebrated Jon's 27th birthday on the 14th!! He is just the best husband/daddy in the whole world! So that's about it, that catches you up! Thank you for the continued prayers, Ella is doing so well but she is so much sicker then people seem to realize because she looks so healthy. Please remember to pray for her and all of her special heart friends!! As we realize that the next and hopefully last open heart surgery is rapidly approaching, reality is starting to sink in, it is scary. We are just cherishing the moments and never taking even one breath for granted.

Playing with some pumpkins!

Such a little dainty thing, playing with daddy's hat! Her color is certainly more blue then it used to be... just signs that her surgery is coming near. :(

Ella's first ride in her big girl car seat!

Ella loved the ducks and the fountains!

Pictures, because she is just so cute!!

2011-09-29T14:24:00.000-05:00

Sitting her her birthday chair with her birthday baby before bed!

Sitting in her big girl chair again! Wearing her shirt from her great great Aunt Kathy!

Bedtime stories with daddy!

Looking cute in between changes of clothes :)

I love this shot because it shows her hair, it is just starting to curl at the bottom, so so so cute!

She decided to pose without any prompting, I love our blue/green eyed girl. She melts my heart!

pictures to update you!

2011-09-23T16:45:00.000-05:00

So these pics are out of order, but they will catch you up on our lives lately!

I had posted about Emma having her glenn on the 19th, so in honor of Ella's friend that day, she wore the outfit they sent her for her birthday! This reminded us often to pray!

She was cheezin it up!

The headband from her friend Emma says "For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11

My girly girl loves flowers and LOVES outside!

On the September 22, we celebrated my 23 birthday!

This is typically how I spend all day everyday and the absolute best way to spend my birthday!

My handsome Honey who spoiled me rotten on my day!

The best birthday present in all the world is being with these two!

Ella and Daddy playing around!

On September the 14th we celebrated our 4th wedding anniversary!

Love this man!

4 years people! And in case you are doing the math, yes I did get married a week before my 19th birthday.

My Sunshine!

Love a baby in footie pjs!! Ella is playing with her new Dr. Seuss books from daddy!

My pretty girl!

Prayer for a heart friend!

2011-09-19T12:24:00.000-05:00

You might remember one of Ella's little heart friends that we have mentioned often, Emma! Well Miss Emma had her Glenn this morning and all went well! But they have a few prayer requests as well as in general prayer that recovery goes smooth. www.emmajanae.blogspot.com Please left them up especially over the next 24 hours!! They are such special friends to our family!

One year ago today...

2011-09-13T14:26:00.000-05:00

We dressed our baby girl in her going home outfit!!

We took a picture in the room that was our home away from home for the last 7 weeks

We Danced in the hall as we headed for the door! ;)

We stepped out those doors to start our journey HOME!

You were happy to go!

Perfect sleeping angel on the 3 1/2 hour drive home

Double rainbow we saw on the way home reminding us of God's love

We're HOME SWEET HOME!

Loved by so many! Blessed!

Sound asleep in your cradle by our bedside... right where you belong. :)

Showing you the nursery we did for you with love and the light we left on from the day we left to the day we brought you home!

One year ago today, we were blessed beyond measure. Today as I reflect, I am in awe of God's mercy and I am moved to tears. Ella, you are so strong... we love you forever, like you for always! You made our home complete!

Birthday Pictures!!!!

2011-09-01T16:26:00.000-05:00

Good morning Sunshine!

We woke her up singing "happy birthday" and flashing the BRIGHT camera.

She was shocked! :)

And pleasantly surprised! :)

Then again it was early lol :)

Birthday breakfast in her royal chair

Beautiful cake donated from Johnie's Bakery through Icing Smiles

Birthday Girl!!

Singing Happy Birthday to our 1 year old!

Digging in and making a sticky mess!

Our Miracle!

She was mesmerized!

and oh so messy!

The aftermath! lol

Gifts!! She is so blessed!

Mommy opened the presents to keep away the germs and daddy entertained the birthday girl!

Ella got bored lol

Big girl in her birthday chair!

Banner from www.bellaballoon.com

We had a full room!!

My mom and Aunts saving the day!!!

Very special guest Lyric with her mom Summer! Lyric is one of Ella's heart friends!! We love her and her family :)

Enough Candy to last FOREVER!! lol

What a GREAT celebration!! God is SO good! Hope you enjoyed a sneak peak at Ella's big day!

Cardiology update

2011-08-29T17:06:00.000-05:00

Well Ella had her cardiology check up today, she did very well considering her usual sever anxiety! She only cried a little bit during her echo cardiogram, and then was brave the whole rest of the time!!!! This is a HUGE answer to prayer! Jon and I could only describe the way she handled it, as God hearing the prayers and giving her indescribable peace! Her atrial septum doesn't seem to be narrowing any more, but we are going to continue to watch it! This was the main concern going into today's appointment, so that is another huge answer to prayer! Her sats are staying around 80-83 and Her doctor said he would prefer to see them around 88. However at this time it isn't a concern, he said she may just drop lower faster than some others. Ella is 19.5lbs. and is 29in. long!! Her ear infection is completely gone and her ears look perfect! Also the doctor said that her heart functions looked great! As of right now we are on schedule to have her next open heart surgery in the next year to year and a half. Although it is absolutely necessary, we are not looking forward to it. In fact it is on my mind several times everyday... we are just clinging to the One who has continually saved her life and the one who knows our future! Our next visit to cardiology will be in November unless for some reason we need to go in sooner. Thank you all so much for your prayers today and for all of the prayers that have been lifted on our behalf. Truly we are humbled and amazed!

A Song For Ella

2011-08-25T11:17:00.000-05:00

This song was written by Jason Dieckman and given to us on Ella's 1st birthday. It has meant so much to us to have so many beyond thoughtful gifts! Please enjoy, thank you Jason!

Update!

2011-08-22T16:19:00.000-05:00

So it's officially been WAY too long for an update, so for that I apologize! I know so many of you are anxiously awaiting pics. of Miss Ella's big day, and I will upload them as soon as I get them! In the mean time I will give you all an update on everything that has happened since Ella's birthday! I am one very proud momma to announce that Ella took her first step on Aug. 10th! Just one day after her first birthday!!!! Way to go Ella!! I also took my first step the day after my first birthday, I find that so special!!! Since then she has taken a few more steps but really isn't showing too much interest in walking lol she can get anywhere she wants a lot faster on hands and knees ;)! She is really expanding her vocabulary! She loves to repeat words, she now says dadda, momma, necklace bye bye, up, bubble, big bubble, diaper, and I know there are lots more I'm not thinking of right now! She says "all done" and "please" using sign language as well! I have tried giving her some whole milk in her sippy cup to start the transition off formula, but she doesn't like it lol She would MUCH rather drink water. So we are sticking with the bottle for now, but I'm not the least bit worried about it! She is just so grown up these days! She just finished her second antibiotic for her ear infection, we are praying for it to work this time!!! I hate her being on antibiotics so much! She got her 1 year shots, and she was so brave but mommy didn't like it one bit! She just has the hardest time at the doctor office these days. Her anxiety level is just brutal! Ella is loving her swing from momma and daddy that she got for her birthday! She loves to be outside, but it's just been too hot unless it's early in the morning or late in the evening! We have celebrated and passed The one year anniversary of the first time we got to hold Ella, we have celebrated and passed the one year anniversary of Ella's 1st open heart surgery, and tomorrow we will reach the one year anniversary of Ella's second open heart surgery! We are getting family pics taken tomorrow too!!! We are SO excited, hoping miss Ella cooperates and is her usual jolly self! Well I think this about catches everything up concerning sweet Ella!

I know many of you pray for Ella's heart friend Emma! Emma was supposed to have her Glenn surgery today which was the most recent open heart surgery Ella just had. They had to postpone it due to a viral infection, PLEASE pray for Emma and her family as they fight off this cold. As you have seen the way an ear infection has affected Ella you may be able to imagine how hard a full blown cold can be on sweet Emma who is inter stage! Until these babies have the Glenn they are SUPER fragile! So please remember to lift her up in prayer!

Thank you all for your continued prayers! Thank you for continuing to be patient with me while I try to get Ella's birthday pics up! Here is a sneak peak! :)

Happy 1st Birthday Sweet Sunshine!

2011-08-09T09:42:00.001-05:00

December 8th 2009

I took a pregnancy test, and we saw the double lines!!

We were so happy words can't express

the feelings we had of gratefulness.

I was only about three and a half weeks pregnant when I took the test,

but the nausea had already begun to hit me when night would come and it was time for rest.

I was five weeks pregnant when we thought we lost you,

we prayed and cried we didn't know what to do.

We called the doctor there was nothing that could be done.

they told me to rest but it was so hard since our hearts you had already won.

Four days later we saw your heartbeat so tiny and yet so strong,

it was rare they could see it so early they said, we smiled at each other as our hearts sang a song.

Mommy began to get very sick.

Although it was hard you were still our number one pick.

I was in and out of the hospital three times, once for 4 days, another for several hours, the last time for a month as we fought for your life

You were so strong and we were determined to fight.

Lots of IVs and and vomiting, a feeding tube, and physical therapy, trying to eat was certainly the worst and it was not fun to say the least,

but it was so worth it to feed you a feast.

You needed the food to help you grow,

and just how important your weight would be little did we know.

Daddy did the encouraging and doctors gave the orders, if what went down was to come up I must start over again.

I would cry and want to give in but Daddy was strong and we fought to the end.

I was 12 weeks pregnant when we finally went home, I was very happy to go,

I hadn't seen outside in a month, there was lots and lots of snow.

At 17 weeks you started to show,

mommy was proud and wanted everyone to know

Time went on and we reached half way,

That was certainly a monumental day!

At 21 weeks we found out you were a girl, we smiled

knowing you would be our treasured pearl!

You were a dream come true

oh how very much we loved you!

Only two days later mommy got a call

and what the nurse said made my stomach fall.

She said they found something not quite right with your heart,

I felt like I had been struck by a dart.

When I hung up the phone, I could hardly breath.I walked outside, knelt on the ground, looked up in the sky

and then I asked God why.

At twenty-four weeks we went to get a second look,

and the doctor confirmed that something was not text book.

He told us you had half a heart,

you would need three open heart surgeries and it would be a rough start.

My eyes filled with tears and my heart with fear.

As I realized we desperately needed God to be near.

two more weeks past and we went in for another glance,

they found something else they gave you only a 20 percent chance.

With this new realization that we may not have you long

we worked hard to cherish each day and we liked to sing to you a song

We sang "You are My Sunshine" and others songs too

That's what you were to us and others who loved you.

my first mother's day came, and although still sick, I was strongly driven,

because being your mother was one of the greatest gifts I had ever been given.

We loved to watch you grow,

and feel you wiggle high and low.

You were continuing to show us how strong you are,

and we knew that strength would take you far.

It wasn't often Mommy and Daddy got to go on a date,

because I couldn't walk far, with the sickness that seemed my fate.

Despite the daily vomiting and struggle as I ate,

Somehow Jesus touched you and you still gained your weight.

Your daddy was Strong, supportive, and kind

he always seemed to have our best interest in mind!

I couldn't believe no stretch marks appeared,

although I was happy it seemed a little weird!

We had a small shower with some of mommy's closest friends

to celebrate your life even if it was close to the end.

With all the complications sometimes the normal stuff got lost,

for instance I knew the anatomy of your heart but had no clue what diapers cost.

As the time drew near we decided to set up your nursery

we were optimistic... cautiously

We wanted to believe you would beat the odds

and that perhaps we would be shown an act of God

We made the decision, to deliver you in Texas,

knowing that this would mean the best chance for surgery successes

Our last Sunday in church before you arrived,

I remember feeling emotional and I cried.

I knew it would be awhile till we came back

and I wondered to myself if you we would lack.

So with nervous hearts and brave smiles

we packed our bags and drove the miles.

We left our home to be with you,

it was hard to go, but it's what we had to do.

We didn't know how long our stay would be

only that us being together would be the key!

Once we arrived our schedule was full

it seemed as though we were in medical school.

Doctor after doctor went over your condition

trying to help us understand what to expect in our position.

They said many times you were at high risk

and told us again you would be very very sick.

We finally made it to the day before you were born

I had mixed feelings that night as I morned.

I could hardly wait to see your sweet face,

only I didn't want you to be gone, I was a basket case.

Early morning on August the 9th 2010

we drove to the hospital, I didn't want to go in.

After a seven hour delay,

because of a few bites of egg that day,

Finally it was our turn

and the anesthesiologist begin with a burn.

The spinal hurt so much worse than I had fathomed

but it was better than feeling the surgery I imagine

I couldn't help but smile even with the future unknown

because I was about to meet you and you were our very own

The doctor said she is almost here

My heart beat anxiously as I began to shed tears

A few seconds later I hard your sweet cry

and they held you up high.

Daddy took one hand and I took the other

it was indeed a joy that no grief could smother.

Only a few seconds had past when the doctor said, I have to send her away,

Oh how I will never forget that moment on your birthday.

You were put on a ventilator and started on meds

Oh what a long journey we had ahead.

You had your first surgery right away,

the nurse reported that it took longer than expected, but at least it went well hooray

You were in surgery for 7 hours, and daddy sat alone by your surgery door

as I was in recovery in a different hospital on another floor.

We may have been physically far apart,

but we were joined together by heart.

Daddy came to see me at the end of the day

I tried to come see you but all I could do was lay.

Not being with you will always be something that will make me sad

although I hope you'll always know I wanted to be there and my heart you had.

I hadn't even seen a picture of your face and I wanted so badly to see your eyes

Daddy got this picture and it made me cry

I hope you know how very much I wanted to see you, I cried,

the pain was was too much but believe me I tried.

It wasn't till early that next morning I was able to finally get in a wheelchair

and take the long trip to your room to see you laying there.

you were so beautiful and oh so small

I wanted to hold you, you were a doll.

Two days later we got a huge surprise,

I got to hold you while you were still your birth size!

I held you for a really long time

You were so cute and you were mine

It was a moment I wasn't sure I would have, my heart was so full,

It was very very emotional

the next day you set in your daddy's arms

and I could tell he was instantly charmed.

When they put you in his arms you were wide awake,

You looked at daddy and then to me as if you new we would do anything for your sake

We were so excited to see you get dressed

after all we knew you would want to look your best!

The day you turned one week old,

would be the day of your next surgery so we were told.

This would be your first open heart

It was beginning, this was the start

We kissed you and prayed over you and shed many tears,

knowing that we may be about to face our worst fears.

Although things did not go just as they planned

we knew the Lord still had you in the palm of His hand.

They informed us they would have to try again,

your little body just needed more time to mend

So we thanked the Lord for everyday,

and gave you lots of love in every way!

Although I was hurting inside and out,

you kept me going even if at times I did pout.

Looking in your eyes made everything worth while

how could we not help but putting on our biggest smile.

You were two weeks old and they said let's try again

we really must get this shunt in.

You made it through just like a champ,

our concern now were your lungs that were damp.

That first night your heart rate shot up way too high

they told us this is not good she could die.

They worked very heard to stabilize you,

giving you meds they said the only thing to do was to wait it through.

Daddy and I prayed hard for God to spare your life, then the doctor came over and asked to pray with us for you,

because that was all he could do.

We saw some improvement right after we said amen,

the staff was confused they had not done anything, God had touched you once again.

you did well with recovery despite the scary times,

they say you were a rock star on your long hard climb.

Once there was a mistake and potassium was pushed in your heart

You could have lost you life but God wasn't finished with your part.

When you would get worked up because you'd had too much.

You sure did love your daddy and his magic touch.

Every single day you got a little better

and we were thrilled to finally see you without the ventilator!

Although you had to where this funny contraption

that didn't stop you from your styling fashion!

We were so excited to finally see you smile

this truly made everything again feel worth while.

You were weaned to just oxygen and you did so well

we just took one look at you and could see you were strong, we could tell

Finally a special day that I had longed for,

you got to try Mommy's milk and then you wanted more!

Most heart babies have a hard time sucking,

you amazed us you were truly something!

Your sunshine brightened every one's day

I guess being optimistic was the only way.

Finally breathing all on your own, we were so proud of you

and by the look on your face, I'd say you seemed a little proud of your accomplishment too!

You were three and a half weeks old when we moved out of the ICU

we were so excited we could hold you whenever we wanted too!

I remember rocking you for the first time

oh what a happy feeling was mine.

I couldn't believe it when you finished your first feed by mouth

We were so excited, because your feeding tube we wanted to leave without!

One day you decided you had enough,

the feeding tube had to go it was a must

You pulled it out before we could stop you,

but mommy was glad because I saw your whole face in view!

You were four weeks old when we bid the hospital goodbye

we were ready to go, no we weren't shy!

We took lots of pictures and I ran down the hall

Skipping and laughing and all!

four days later they gave you the all clear,

so we loaded up our stuff, our trip's end was near!

You had a whole new world to discover

and again I was so very proud that I was your mother!

You did great on the long drive home,

and then I couldn't believe you were finally in a cradle all your own!

You adjusted right away

as if you knew this is where you were meant to stay!

You kept growing and smiling all the way,

you just brightened every single day!

I certainly cherished our time together

having you to hold was never better.

So very many people loved you

You didn't even have a clue!

They had a fundraiser called the "worth it all" run

We were able to take you and everybody had fun!

We were in awe as we watched you develope new skills with time,

they said you would need to catch up and that you would be behind, but you were just fine!

Watching you sleep is a special time,

it's still and quite and I always thank God that you are mine!

Although every part is fun, holding you is the best

I love the way you hold my necklace and lay on my chest.

Here you are learning to sit in your chair,

you were only three months you're growing so fast and I can hardly believe you have brown hair.

You worked so hard to learn and play

but your heart would get tired anyway.

One scary night your oxygen dropped so low

we called the cardiologist, because this was dangerous we know.

We hooked up the oxygen tank it was so scary

I was hoping everything was okay even though I was leery

All though you felt bad,

a smile your face still had.

Within a few days we were in to get your heart checked,

they changed some meds in hopes it would help, nothing worked, I was a wreck.

We got a call from Dallas telling us to bring you that night, emergency cath surgery would be in the morning.

So we threw our bags together and went down without warning.

When they started your IV you cried so so hard and there was nothing I could do.

I held your head and whispered prayers in your ear for you,

I prayed that Jesus would take away the pain,

you instantly stopped crying turned your head, fell asleep, and still you became.

It was hard to go back and see you in the hospital bed,

you were hungry and tired but could not be fed.

I held you, rocked you, and tried to comfort you,

yet their was nothing I could do.

Daddy was by your bedside just like always

He was never much farther then the hallways.

Just 4 days later we were headed home! Good as new

without the oxygen tube!

You were so happy and sweet

you would never know a surgery you had just complete.

Once we were home you continued to grow,

daddy thinks you look pretty in your bumboo.

You have hundreds of facial expressions and this one sure got some laughs,

I think you get them from mommy because expression daddy tends to lack.

Just chillaxing at home with your contagious smile,

you continue to make us laugh all the while .

You're a bit of a show off but that's okay,

you're kind of a big deal and we like you that way.

Three months old and your first thanksgiving!

You wore the first outfit Mommy ever bought you, it was my first purchase in faith that you would be living!

We couldn't see family or friends this year so we made it special just us three.

We decided to decorate your first Christmas tree!

We took a family photo to capture the day,

we are as thankful as can be in every possible way.

We love you so much our sweet Ella Dawn

and forever over you we will fawn.

4 months and counting you are growing and living up to your nick name,

you do not like tummy time but you are our sunshine just the same!

One day you were playing and you got so tuckered out

you fell asleep holding your toy while I was up and about.

In mid December we wanted to do something fun,

after all it was your first Christmas we had to spoil you some!

We bundled you up to go drive through some lights,

You watched every display intently and in your eyes we saw delight

You love your toy flower, and playing peek-a-boo

Sometimes it makes you laugh and then we laugh too.

You love to look in the mirror and I can see why,

You are so pretty and you like to wave hi.

Usually you love mamma's kisses really you do,

you put up with quite a lot that I put you through.

You have pink toenails but stinky feet

they are tiny and oh so sweet!

Your first Christmas morning we got up so early

maybe next year you'll have more fun...surely.

Later that day you were as Jolly as can be,

you had a big smile as everyone can see

Mommy bought you this sweet Christmas dress, and hat I couldn't resist!

You were certainty on Santa's nice list.

5 months old and you know your daddy rocks

I'll bet he will want to keep you under key and lock

Again with personality you are such a clown,

one look at you and our spirits can't be down

At 5 months old you got to wear the first outfit daddy bought for you.

He bought it one day when I was pregnant and needing cheering up because I was feeling blue.

Before we knew it the time had come for your next open heart surgery, It was mid January and you were 5 1/2 months old.

This was to be the easiest of the three we were told.

Back down to Dallas we drove with care

hoping it would go well without any scares.

Here you are the morning of the surgery, not knowing what was to come

It made us feel sad and we desperately wished the surgery was already done.

We waited and waited for a nurse to call us back

you were so patient and your sweetness didn't lack

You fell asleep in daddy's strong arms the hardest part was about to begin.

We prayed and snuggled and it didn't seem real, could this really all be happening yet again?

We finally got called back to the pre-op room,

we played and laughed but the fear still loomed

After playing so much you fell asleep again

it was time for the surgery to begin.

We walked you down the hall as you dreamed, then we watched as they rolled you away

That was one of the hardest moments on that day.

Seeing you after surgery was so very hard to see

you were in so much pain, but you just had to be

one day after your surgery I got to hold you in my arms

You held on to my necklace and knew you were safe from harm.

You were so brave through every pain,

that you had to endure any of this is truly a shame.

Soon we made it to the recovery floor

sooner then expected that was for sure!

You love your daddy so very much

You smile with every reassuring touch

We thank Jesus daily for His mercy in saving you

You are such a blessing, without you we wouldn't know what to do.

4 days after surgery we were leaving Children's Medical Center

You were post Glenn we were excited for the new phase we would enter

Back at the Ronald McDonald House we did snuggle

It was nice to see you happy even though your eating was a small struggle.

9 days after your third open heart surgery, once we were at home, you set up for the first time,

so much faster then expected up the development latter you did climb.

We had a small glitch and your oxygen dropped, to the low fifties

It was time to call your doctor for cardiology.

We had to place you on oxygen because your right diaphragm had been paralyzed

At first you thought it was awful and had tears in your eyes.

Thankfully soon you adjusted as we prayed for it to heal

we had to wait 9 1/2 weeks, but it came back to normal, could this be real.

You love bath time now, though you hated it before

Look how cute laying in your special towel on the floor

This was your first bow that stayed in your hair

Usually a headband you had to wear.

You always pulled your oxygen in your mouth to blow

this always made your sats drop so it was a "no no"

You started holding your own bottle at only 6 months

but you gave that up quickly although that was my fault I have a hunch.

I liked holding your bottle, so I didn't make you,

but after all your my baby and you didn't seem to mind that I do.

Your first valentine's Day daddy bought you a purple rose,

you were so cute from head to toes

You also tried rice cereal for the first time on Valentines Day,

you did really well even though you didn't swallow much so most of it we threw away.

One of the first nice days showing us the hope of spring

We had our first picnic, with snacks, and a blanket and everything.

Some days are harder then others on me,

You seem to always know just what I need

This day in particular the tears came so freely

as I held you, you touched my face as if to say "it's okay to feel uneasy"

I try to be strong when you are near me

but seeing your smile makes me want to make your life easy

At 7 months old you first sat in your highchair

of course I had the camera, this was a big affair

Your first taste of baby food was banana's at 7 months old, you liked them okay

Of course now you eat them almost everyday

Always so happy filling our home with sunshine

We always want to be with you we sure enjoy our time.

enjoying your bath playing with the shampoo

You look pretty cute sporting your new due

Your first hawk inspired by your bath

It was fun to play with your hair it's growing so fast

9 1/2 weeks post Glenn and Jesus healed your diaphragm with NO additional surgery needed!

Our dreams for you He has always succeeded!

We were so happy to lose that long cord

Seeing your whole face again made us once again thank the Lord

You started to love having your picture taken

You would squint and squeal with joy there is no mistaken.

Daddy gave you your first lawn mower ride,

you weren't even scared, you took it all in stride

It took a while for you to touch your feet to the floor

your feet are sensitive after all you have had to endure

This was your first bath in your fun big girl seat

You played the staring game with your rubber duck and you would not give in to defeat

7 months and you finally got your pictures taken

You are the cutest little girl let's not be mistaken

Here you are with the paper where the cardiologist told us about your conditions and where he wrote your "chance" to survive

Here you are today determined to not only survive but to go beyond and to thrive

This is your beloved dog named floppy

he is your soft companion nightly

7 months and sporting your first ponytail

you are so cute right down to every detail

8 months old and as pretty as can be

you make everyone smile you have a special ability

Your first Easter we had to stay home from church, it was a cold and rainy day and we even had some hail,

but since we were safe and warm inside we enjoyed the time as the storms fell

9 months old and quite the doll

You get almost anything you want, I'm at your beckoned call

You got your first tooth on the bottom right

It was about time it came through, it sure liked to keep you up at night

Standing by yourself for the first time at 9 months old

You are far more precious than shinning gold

Mother's day and your public baby dedication at church

We took you out of your plastic bubble that is usually your perch

This was your first set of pigtails at 10 months old

Also your second tooth came through you are such a sweet sight to behold

It was so hot this summer we decided to let you "swim"

The cold water made you cry, but you were such a cute gem.

One sock on one sock off, no pants, messy hair,
and messy room, seriously the cuteness is more than I can bare.

Your first mess to make all on your own,

you rolled and scooted over to your diaper tote... you're bad to the bone.

Feeding yourself for the first time, what a big girl 10 months old

Even with that messy face one look at you and my heart is sold.

Happy Father's Day to the best Daddy ever

truly you two are the cutest together

Daddy is already your hero for sure

You love him so much when you are sad he is your cure.

Always making us laugh

we love to watch you on your learning path

Family date to dinner and ice cream

Life is good and at times is somewhat normal so it seems

You love Oreo's and they were one of your first solid foods

It got all over your mouth but it was chocolate, you loved it... you just knew

You are so far from camera shy, this is your favorite face to make for a picture

You actually pose, we like to think of it as a sugar and spice mixture.

You love to claw at things like eyes, belly buttons, teeth, and camera lenses

This picture captures you perfectly on one of your ornery missions

Your first 4th of July, in your adorable navy dress and hat

you sure looked adorable as you smiled and sat.

You know you are the star

No doubt in comparison we are far.

Sometimes you look sweet

which you are, it's not a cheat

But than you look sassy and that's true too

Just look at that face, look at you

Family picture on the 4th of July

Oh how fast you are growing know one can deny.

This is the home where you have spent your first year

We have lots of love and joy in our memories here

11 months old learning to transfer from your toy to the couch

you can do it by yourself you are really getting around all about

Standing at you current favorite toy

seeing you happy is such a joy

11 months and crawling you're on the move

It didn't take you long to get in the grove

Drinking from your sippy cup

You have it down well, although we have to remind you to tilt it up

Standing in your crib for the first time
I'm sure it won't be long until you start to climb.

crazy hair, and you look like you have an attitude
but you were actually being sweet, not being rude

This is one of your favorite faces to make

I call it your "sassy" face but don't be fooled, we all know it's fake.

standing at 11 months all by yourself and we are SO proud
Though you're not quite taking steps, the cheering we give you is quite loud

You say lots of words including dadda and momma, necklace, up, and bye bye

you say all done in sign language and you like to play shy.

This last year has been the most incredible journey we've ever had

We couldn't have imagined feeling so happy and at the same time so sad

The truth is that I cry almost everyday it is hard to see all you have been through

there is lot's of sadness but there is joy too

I think the hardest part is knowing there is more to come

You don't deserve the pain you endure but mommy and daddy are with you, maybe that will help some.

We want to kiss your boo boo and make it all well

but sometimes kisses aren't enough, so in constant prayer we must dwell.

Your personality is wonderful and just so bright

That is also what your name means, it means LIGHT!

You are our sunshine

our only Sunshine

You make us happy when skies are grey

you'll never know dear how much we love you

Please don't take our sunshine away.

Thank you for your sweet sunshine that has brightened everyday

We hope this is the first of MANY more birthdays.

And regardless of how many we get to have with you

You should know, Jesus will always be near no matter what you do.

The doctors may use the title "terminally ill" when describing you

But clearly they haven't seen all that our Jesus can do

He has already saved your life over and over again

Who are we to think that what He has done isn't the way He will always be and the way He has always been.

His power is far beyond all our minds can grasp

and even though we fear we know it's best to place you in His clasp

So now we want to wish you a very happy birthday

we hope you feel loved because you are in EVERY way!

Who knew one year could change so much

we cherish the blessing of every special touch

You have taught us to love and care in a whole new way

Every morning is a gift not just another ordinary day.

You are a special blessing, our sweet sunshine,

We hope someday you'll look back and see the miracles that were your lifelines.

I can't believe how far you have come

and just how much of our hearts you have won.

Happy 1st Birthday Ella Dawn, We Love You Forever, Like You For Always, ~ Mommy and Daddy

Birthday plans and health Update!

2011-08-05T21:20:00.000-05:00

Ella's Birthday is JUST around the corner and we are SO excited! The party is going to be huge!!! We don't want anyone to feel obligated to bring gifts, she will get plenty I'm sure! Also since we have a small house, instead of having lots of little items, gift cards are a GREAT option for Ella! We have a few guidelines we would like to set for the party!

For Ella's sake, we ask the following:

Please don't attend if you've been sick within the previous 48 hours
Please don't attend if you've been around with (i.e. had sick kids) in the last week (you might be contagious... just without symptoms yet)
We are going to try and minimize germs, so this won't be a "pass the baby" kind of party! :-)
Kids are MORE than welcome!
We LOVE hand sanitizer and hand washing! :D

This is how we live our lives everyday, so we definitely want to keep up the pattern with such a large crowed!

Ella's health update - She has finished her antibiotic for her ear infection, also her nose isn't running anymore, and her rash has cleared up! Her sats had come way up to the 90's and her heart rate had come back down to the 120's! That was good because it meant that she was feeling better, it is bad because it shows us just how much a "small" illness can take her WAY down. Two nights in a row now she has started fussing and waking up throughout the night again, which makes me worry that her ear infection has already returned. Because also over the last two days her sats have again dropped to the mid 70's to low 80's and her heart rate has again started to rise to the 140's also she is sounding like she is dealing with head congestion. :( The numbers that are dropping could still be the PFO closing in her heart, but we won't know about that for awhile still. So all of that being said, prayers are still so appreciated! Thank you all!

Update on today's cardiology vist

2011-07-28T18:49:00.001-05:00

You can see her lips have turned a little bit more blue. They can get really purple these days :(

Well Ella's numbers have been great today for the most part so this is good! Although she had a hard time at the doctor, she was VERY brave! Unfortunately since she is really dehydrated (because with her ear infection she is not wanting to drink, I think it hurts her ear to swallow) at labs they stuck her and dug around for awhile only to get NOTHING! It took three of us to hold her down (she is insane strong) So I was NOT a happy momma! Thankfully the cardiologist said we could just try again next month and hopefully by that point she will be way over this ear infection and they can get a better draw. So as for the results of the echo here's where we are. He told us that her atrial septum that she had to have opened the moment she was born seems to have slightly narrowed. Originally it was 10mm and now it appears to be 8 1/2mm, what this may mean is that if this continues to narrow she will have to have MULTIPLE additional cath surgeries. He said this is... VERY RARE... I bet you didn't expect to hear that :p I actually laughed out loud when he said that, and before you think I am heartless you need to know that EVERYTHING about this child seems to be "rare"!!!! He said the bad thing about this is that if her atrial septum is closing off again it will always try to grow together which basically means about a surgery a year... forever.. blech :( At least it isn't open heart, but it is still dangerous since she has to be put on a ventilator and have a hospital stay etc. Just makes me feel sad for even yet more for her to jump. The good news is that she hasn't been "officially" diagnosed with this yet, so we will be praying HARD and hoping that you join us in asking the Lord to keep the hole OPEN! The cardiologist also explained that this could also be the ear infection making things worse. I asked him if this will happen every time she gets just a little sniffle and he said... maybe... Well that made me super sad and a bit scared too if I'm going to be completely honest. He told us that we needed to continue with our "semi seclusion" especially through the upcoming flu season. He said most likely until after her last open heart surgery. Which honestly I am MORE then okay with, it is a sacrifice to not see family and friends as much as we would like, but she is MORE than WORTH IT! Especially since this little ear infection has caused to much pain and anxiety for her. We will still be having her big birthday bash, but we want to take this opportunity to remind everyone to be as healthy as possible that day! Also just a heads up NO one will be touching her that day except mommy and daddy. I'm sure you understand, and if you don't... try putting yourself in our shoes ;) We are however REALLY looking forward to celebrating with so many of you who are so VERY special to us! So for now we watch her pray for her to heal from this infection as SOON as possible, and then in a month we go back to remeasure the atrial septum and until then we will pray for God's mercy. As I was thinking about the fact that our daughter is so "rare" and that every doctor we have ever seen has told us that I realized that being "rare" sure isn't always a bad thing. Her living is "rare" and I'm more then okay with my "rare" sunshine. She is perfect in every way to us and we are so proud of all the hurdles she has faced and beaten!

A little scare

2011-07-27T23:05:00.000-05:00

So this evening as I was getting Ella ready for bed I hooked her up to her heart monitor just to make sure all was well before sending her off to bed. What we saw when we finally got a reading was unsettling to say the least. Her oxygen should be around 85-95, in the last week or so it has been around 80, as long as it stays above 75 she doesn't have to be on oxygen. Also her resting heart rate should be around 120. When we hooked her up this evening her oxygen was down at 68-73 and her resting heart rate was 163!!! This is not good. I called the cardiologist on call and we agreed that despite the obvious danger in taking her to the ER with all the germs that would be there, if her heart rate didn't come down in 30 min. It would be absolutely necessary to take her in. So we hooked her up again and her oxygen had come up to around 78-80 and her heart rate had come down to around 150. So still high but low enough we felt like we should just keep her home and have her seen in the morning. The cardiologist explained that even though their is clearly something that's causing a problem it may be an easy fix. He said this could all be stemming from her "viral" infection. Which is so small it can't even be for sure diagnosed as a "viral" infection. This is the stark reality of how IMPORTANT it is that we keep Ella healthy! A tiny bit of clear snot from time to time and she is nearly put in the hospital!!! However this could also possibly be an actual heart issue, we are praying that this is not the case. We are seeing the cardiology tomorrow and we will have labs, echo-cardiogram, ekg, etc. all the usual run through, that being said please pray for Ella's anxiety level tomorrow as this will be the third time to go to the doctor in a week and it is EXTREMELY difficult for her. She has severe anxiety at doctor's due to all she has endured, it is very hard for us to watch her shake in fear so much. On a good note, after Ella fell asleep we checked her again and she was sating so great! Her oxygen was 90-95 and her heart rate had dropped to 120! This is higher then it has been in a really long time, so we aren't sure what to think, but we are happy! This heart rate is still a little high for her sleeping heart rate because that is usually around 105 but we will take it for sure!! Praying for peace and wisdom and hoping to get some much NEEDED answers tomorrow as well! Thank you prayer worriers for lifting us up to the Father when we are weak!

Also I thought I would post a pic of Ella's newest trick! Standing all by herself for several seconds at a time!

Dr. visit

2011-07-26T15:32:00.000-05:00

We had to take Ella in to her pediatrician again because we had some more concerns. After her last appointment she seemed to do well and her nose seemed to dry up a bit, so we were encouraged. However, Since then there have been several warning signs that we felt we should take her in again. Turns out her left ear that had fluid on it has now turned into an infection. :( This is most likely the main cause behind most of her other problems (fast heart rate, low grade fever, not eating well, not sleeping well, etc.) Also the rash that was on her chest scar is not eczema after all, she said it is a bit of a mystery to her, but she is quite confident that it has nothing to do with her heart but rather a viral infection coming out in the form of a rash on her chest. We are sad that our baby is sick. This is the first time. I knew it would happen, but I.just.don't.like.it!!! One of our main concerns is that her toes and her fingers, her lips, tong, and nose have been tuning blue often even though it is just for short amounts of time. We take Ella to see her cardiologist on Monday, and hopefully we will get a good report. In the meantime Ella could really use some prayers as she is fighting off her first sickness... I know an ear infection may not seem like a big deal, and just an ear infection on a healthy kid may not be uncommon. But Ella is having all sorts of other difficulties and it is causing stress on her heart as well, so it is a big deal for our sunshine. Please please please keep her in your prayers. I will give an update after her cardiology appointment sometime next week.

Sick?

2011-07-23T11:19:00.000-05:00

Well as you all know it has been our goal for the last 11 1/2 months to keep our sunshine healthy! So far so good, until a few days ago. She had a little bit of clear snot and of course it caught my attention since she hasn't ever had a runny nose. She hadn't slept well and was running a very low grade fever (99.3). So after a few days of her having these slight symptoms I thought it was most likely teething, because she was not eating great and just showing all the signs of a new tooth trying to surface. Then she got a diaper rash from the heat. She has also had a strange looking rash on her chest scar for quite some time. With all this going on I decided to take her in just in case. Turns out, she has eczema on her chest. The doctor gave me some cream for it, hopefully that will help. Turns out she has yeast on her bottom, the doctor said all the babies seem to be getting it with this heat. Turns out she either has a very mild cold, allergies, or is just teething. The doctor said she had a very small amount of fluid on her left ear but it is not infected. We are praying it doesn't turn into an ear infection. Over all she said she looked great, she said she didn't even think it was bad enough for benadryl. So over all I guess she isn't sick, but still kinda sad. I am hoping to keep her "sick free" at least till she turns 1. We are so close, so hopefully this cold/teething/allergies thing doesn't turn into sickness!!! Sickness is band from my house! If it does turn into a full blown cold, I will be very disappointed. Ella's nose doesn't seem to be runny much at all anymore, but she sounds a little congested in her head. I guess we will have to wait and see. God has a plan and I know that He is taking care of her, in fact the doctor was just amazed that miss Ella is 11 1/2 months old and had never even had clear snot before! So I guess He is in control! I told her that we have been very careful, and she said even being careful that is amazing! We are getting used to hearing from doctors that she is doing beyond amazing, but it never gets old!!!!!!!!!! Also our sweet sunshine is pulling up to a standing position without help! She has done it two or three times while I have been watching and three times when I haven't been watching! Two of those times were when we went to get her up from a nap she was standing in her crib!!! She is such a BIG girl! She loves to play with her leapfrog learning table and she will take a few steps (still pretty uneasy) while hanging on to it! If I put the table next to the couch, she will transfer from holding the table to holding the couch! She is crawling all over the place, she is getting pretty fast too! She is just doing GREAT! Thank you all for your continued prayers for our sweet sunshine!

-Please pray that whatever this is that she is dealing with would not turn into sickness!
-Please pray that she would be able to eat and sleep better soon!
-Please pray for her heart friends, especially Annabelle. Annabelle had a heart transplant and had a severe episode this morning and required cpr, an ambulance ride, mediflight, a ventilator, and picu stay :(

Ella's new trick!

The two loves in my life having fun :)

The Official Invitation!!!

2011-07-20T13:01:00.001-05:00

The party is in Shawnee, OK! Thank You to Rita of bellaballoon.com for the beautiful invitation!

11 months with our miracle!

2011-07-09T12:07:00.000-05:00

Ella Dawn our sunshine, You are 11 months today wow! Three days ago you crawled for the first time! Mommy was so proud I cried! Daddy was home too and he cheered you on as he watched! You pulled up to your knees for the first time on Thursday, and your favorite thing to play is peek-a-boo! You have loved this game for a long time, but you have a whole new interest in it, as in you would play for hours on end without pausing! You are loving books and standing! You seem to be getting quite tall and your hair is growing! You are fighting two new teeth on the bottom that just won't pop through yet! You LOVE music and you love to hear and say your name! You are so cute and smart! We finally have caught up on all your yucky shots we just had the last two on Thursday we have more due in the next few months, but at least you aren't behind anymore. Shots are always hard on all of us, you especially, but this time was especially bad since you know the room and the nurse. I could feel you shaking in my arms in anxiety after the nurse had said hi. You started to cry because you knew why we were in that place, you looked so sad. When the nurse came in with the shots and I had to lay you on the table you started to cry so hard and just looked into my eyes like you did not understand why I was doing that at all. it broke my heart, I cried. As soon as the nurse finished I scooped you up and daddy wrapped us up in his big strong arms... that seemed to make things a little better. As always you were very brave and we were so proud! I can't believe you are so big already! I am loving each new stage with you, but it's all flying by too fast. With two hands from mommy or daddy you can walk all around now instead of just a few steps! You have been doing so great with eating some solids, you hardly gag at all anymore! You like your sippy cup too! You are so special sweet girl, we love every single second with you! Happy 11 month birthday Sunshine!!!!

Ella's fist 4th of July!

2011-07-05T22:10:00.000-05:00

Ella's sweet "hand-me-down" dress from her cousin!

She knows she is the star :)

Wearing her bow from her heart friend Emma!

My goofy girl!

Our Family

Love her so much!

Happy Baby!

pictures!!!

2011-07-02T21:15:00.000-05:00

One morning she woke up with her hair strait up in front, I guess she slept on her face lol

She always makes us smile!

Going out on a family date!

The date started with dinner at one of our favorite places. One of the few places that sounded good from time to time while I was pregnant, also one of the few places that I haven't thrown up in their toilet (not that you wanted to know that)! This trip was extra special to me as it brought back memories of times more uncertain. Jon and I went here just weeks before we left for Dallas with all the unknown ahead. As we sat there eating, a couple walked in with their brand new baby girl. In fact they had come straight from the hospital, she was still wearing her hospital bracelets. I couldn't help but cry. I desperately longed to embrace that little baby and sob, but knowing the parents wouldn't understand I refrained. One of the hardest things for me was seeing parents bring their new born's home right away, I was happy for them, but angry and sad that I wouldn't get to take my tiny baby home right away, and for that matter maybe never. So on this day, as I sat one booth away from where that family sat back then, Ella smiled and cooed, happy and healthy 18 lbs. 10 months old, I couldn't help but cry again. This time they were tears of joy and whispers of beyond grateful "thank you's" to my merciful Jesus. Sometimes as inadequate as "thank you" is, it's all that can escape my lips... and I say it over and over and over again...everyday. God is so Good!

Here we are, a family of 3!!!

Next we moved on to Ice Cream! She went to town at first but quickly decided she had enough ;)

A few days later she had a bite of Oreo and loved it so much we had to get out the camera to catch her excitement... this was the result of my camera shy child hahaha she is such a goof! :)

I LOVE MY FAMILY!!!

A big day is around the corner!

2011-06-21T16:38:00.002-05:00

We just can't thank you all enough for following Ella's life and praying for her all this time! It's hard to believe Ella's first birthday is just around the corner, Aug. 9th 2011!! We are inviting YOU! Please RSVP in the comments, and make sure you are healthy the day of the party!!!! We would love to have you as part of this wonderful celebration! I want to say a VERY special thank you to Rita http://bellaballoon.com/ for the save the date you see above! More details to come later!!

Happy Father's Day!

2011-06-19T12:42:00.002-05:00

Happy Father's Day! Growing up father's Day was all about my daddy. Who he was, what he did for us, all the good times we've had! We would scramble around to spoil him extra on Father's Day. I like to think we spoiled him a bit all year with it being all girls in my family! :) Truth be told he spoiled us a little too, well he spoiled me at least, after all I was the youngest! :) Love you Daddy! Father's Day has always been a special day, but somehow now it means even more! Being married to the man of my dreams, having the baby girl of my dreams, and watching them together... wow! Being a parent certainly makes me realize that before I was a parent, I really didn't understand just how much a parent loves.It is INDESCRIBABLE! I have to brag on Ella's big strong daddy here, it's so easy to do, and after all it is father's day! I remember when we were first getting to know each other, going on dates, talking, I wandered what kind of dad he would be someday. He talked tough, I wanted him to be a "daddy" not just her "father". We talked about baby names (yes before we got married) I mentioned the name Ella and to my surprise he really liked it. We tried to come up with a boy name, but never really could. We knew the middle name would be David after my sweet hubby himself (Jonathan David) So we jokingly from then on when referring to future kid's we used the name Ella! Little did I know that on Dec. 8 2009 we would get the positive pregnancy test that would forever change our live's and would officially make Jon a daddy of a little girl named Ella! He was so excited as was I, he picked me up in his strong arms and ran around the house like a crazy man lol He was so cute! He is NOT the expressive over the top type of guy, so I was a little shocked at first :) But now I know the power of a little girl on her daddy and I know that was just the first of many more over the top actions from her daddy for her! When we thought we lost our sweet baby very early in the pregnancy, we wept together. He was strong for me, but I could see his heart breaking. He loved her deeply, instantly, she already had his heart. When I was in the hospital 3 times fighting for her life, he was there. He drove the nearly 2 hour round trip to work and back every night to sleep in a horrid stiff chair at my bedside. Jon literally carried me when I was too weak to walk, he held my hair when I threw up, he made my food and when I felt too sick and wanted to refuse (every meal), he lovingly yet firmly ;) forced me to continue to take another bite to save our unborn child's life. He was her advocate. For nine months he stood by my side doing far more then his share of the work, without him and his persistence Ella would not have been born on Aug. 9 2010 at 3:23pm weighing 7lbs. 4oz. 19 3/4 inches long. He came to EVERY single doctor appointment that I had throughout my pregnancy, He loved to hear her heartbeat! Once she entered this world, as much as I deeply wanted to care for her... they had to take her away. And even though I missed those precious first moments of firsts for her, he was by her side standing in where I could not. The moment she was born and we touched her hands, we knew we couldn't lose her. As the teams of surgeons rushed her away I remember Jon was going to be going with them to be with her. It was the first time he was leaving me to care for her, I was still in surgery and scared. I watched as a whirlwind of people took my baby away and Jon gave me a kiss told me that he loved me and he was gone. He was a father, yes he was still my husband, but I wanted him to go, and for the first time I wanted him to care for someone else. We understood our love for one another, it was time to share our love with another. He sat alone for 7 hours through her first surgery while I was in recovery. He stood by her bedside all night long. He came and checked on me when he could, but his heart was now part hers. I didn't mind because you see she had captured part of mine as well. She didn't steal our love from one another, she made it grow! Jon has gone above and beyond and is the definition of father! He gave her, her first kiss, her first bath, he showed her love! Ella has made Jon a father, but he has become a "daddy"! Watching the two of them together truly is the best site, the love between them is bubbling over. She light's up when she sees her hero, and his tough talk from before.... well let's just say she might just be a little spoiled from her daddy :) But that's okay, that's what daddy's are for! Jon is an amazing man, husband, father, friend. He is our HERO! We love you SO MUCH! Happy Father's Day!!!!!

My two favorite people in the whole world!

10 Months (on June 9th) with our sweet sunshine!

2011-06-02T22:42:00.000-05:00

Thankful... thankful is the word to describe how my heart is feeling. Humbled by His grace I sit here and write about the last 10 months. The 10 months we weren't supposed to have, the 10 months that have brought me more joy and more pain then I have ever felt in my whole life. Ella Dawn has forever changed me. I will NEVER be the same. She makes me love deeper, cherish the little moments more, and she makes me want to be a better person. Sometimes I wonder to myself if God really knew what He was doing when He made me Ella's momma, I wondered if I was really the best momma out there for her... surely not I thought to myself nearly every day. But I am convinced that she is the BEST daughter for me! Whether she was sent here for me to change her life, or for her to change mine I'm not sure, but I only hope that one day she will know how very much I love her. Some days this journey seems possible, I just feel like this is the path, okay let's do this. Other times it is heartbreakingly unbearable. Death is all around us in the heart world, and even though Ella is excelling she is always at risk, her heart is working twice as hard as all of ours. Sometimes when I look into my sweet sunshine's eyes my own eyes swell with tears as I thank the Lord for another day. This 10 months has had a lot of pain, but we have also had so many incredible moments. In the last 10 months Ella took her first breath, we touched her hands and saw her sweet face for the first time, we looked into each others eyes for the first time, Ella smiled for the first time, we held our baby for the first time, Ella learned to breath without oxygen, we took our baby home from the hospital, Ella took her first car ride, Ella slept in her crib, she wore her first outfit, she ate from a bottle, she ate baby food, she went to church for the first time, she was publicly dedicated to Jesus, she has for the most part continuously gained weight, Ella learned to roll over, she learned to sit up, she learned to stand, she learned to sleep through the night, she learned to blow a kiss, she learned how to dance, she learned how to say "Dadda" and "Momma", she learned how to say all done in sign language, she had her first bite of ice cream and sno cone, she has learned to eat a solid without throwing up, she has gone through 5 separate surgeries (3 open heart 2 cath) infection free, she had her first Thanksgiving Christmas New Years Valentines Day and Easter, she learned how to drink from a sippy cup,she learned how to feed herself with a spoon, she learned how to drink from a straw, she had her first week without a doctor visit, she had her first pigtails, she went "swimming" for the first time, she went on her first walk, she had her first picnic, she got her first two teeth, she had her first kisses and hugs, she heard "I love you" thousands of times, she made me and daddy cry tears of joy, her diaphragm was healed, She has defeated her 20% survival chance, She has daily made me smile, wow... tears flowing down an abundantly grateful momma's face right now. Thank you Jesus for an incredible 10 months of firsts of many more to come, of LIFE!

Day one... a precious long awaited meeting

Getting to hold her for the first time

her first outfit

first bottle

breathing all on her own!!

leaving the hospital one month old!

leaving Dallas and heading HOME!

in her crib for the first time!

first Thanksgiving

first Christmas

first Valentine's Day

first picnic

first baby food

learning to roll

first pony tail

first Easter

standing

Baby Dedication at Church

First pigtails and first 2 teeth!

Learning to eat by herself!

Happy 10 months Ella Dawn, what an incredible 10 months it has been! :)

Update... because it's been awhile :)

2011-05-28T15:08:00.000-05:00

Well our sweet sunshine continues to grow stronger everyday! We are so in love with her spunky and sweet personality! We see more and more faces and hear more sounds everyday! I have no idea where she gets all her crazy faces ;)!!! Ella has just cut her second tooth and it's so tiny and cute (of course)! She is just starting to rock back and forth on her hands and knees! Also she is getting more balance when we practice her standing! I don't know what she weighs right now, probably around 17-18 pounds or so! She is eating much better, she still struggles quite a bit with any texture. She gags/throws up from time to time when she eats her solids, but she sure is improving! Ella has been sleeping great! She is still pretty skinny nearly 10 months and still wearing size 2 diapers with PLENTY of space to grow! She also is still in size 1 shoes! She is growing tall though, who would have thought she was going to be tall and skinny ;) Her hair is turning lighter everyday. Her tips are still very dark but the roots are getting quite light. I really don't know what else to say in the update, she is perfect!!! :) If you have any questions you would like me to address here feel free to leave them in the comments, and if possible I will answer them! We ask that you continue to pray for Ella, even though she is doing amazing, she is still of course ALWAYS at risk.

I follow a blog of a sweet baby named Tripp Roth. His blog is http://randycourtneytripproth.blogspot.com/ In one of His mom's recent posts, she touched on the subject of germs, after learning that her son was fighting an infection. I thought she said it perfectly! She put it this way:
"I made all new signs- for the back door, over the sink, in the bathroom. I'm even going to start asking people to take off their shoes when they come in. I mean, think about it, your shoes are the dirtiest, most disgusting things. No telling where you've stepped or what you've stepped in. I should've done that a long time ago, I know. But it just seems like some people still don't get it. I know that I wouldn't want the bug I pass on to Tripp's open sore to get into his bloodstream and cause him to be in the hospital. You know?? ... But I guess not everyone thinks like that. So I'm here to remind them:) And it doesn't matter if you just left home and took a shower or if you washed your hands before you left the house... did you touch the door handle? or your steering wheel? or the buttons on your car radio??? All of those places have germs. And when you come out of the bathroom... I mean REALLY- does that even have to be explained?? So before you touch my little pumpkin's toys... SCRUB HARD."

Tripp has a very different circumstance then Ella, but the fact that germs must stay away remain the same! It is just so hard when people do not take Ella's condition seriously, mostly because she looks so healthy on the outside. When I read Tripp's mommy's frustrations of people not taking necessary precautions I immediately felt for her. Having to watch your child go through the difficult path life has given them is hard enough. Altering your life more then you ever thought possible to keep them healthy, safe, and as pain free as possible. Then to have someone who either unknowingly or worse knowingly disregards any boundaries that have been set in place to keep Ella safe, truly is so very painful. Look at the pic. above and remember what we are fighting for! I guess some people will never understand unless they experience the fear in a parent's heart raising a child fighting for their life...

Please continue to keep all of Ella's heart friends in your prayers as well as Tripp the baby in the link above that has "EB" Thank you friends for your faithful prayers! We can't thank you enough for all the kind words and gifts that have been sent our way! God is SO good!

videos to make you smile!

2011-05-24T08:57:00.001-05:00

So I put up 2 video links, but apparently they were set on "private" and could not be viewed :( So I tried to post them in the side bar to the right! Let me know if they work this time! They are pretty cute! :)

Pictures!

2011-05-14T17:30:00.000-05:00

We had the AWESOME privilege of publicly dedicating Ella at church on Mother's Day! Usually we can't take Ella out of her covered stroller at church because of germs, but we made sure the people on either side of us were very healthy and we "unveiled" Ella for all to see! It was so wonderful to show her off to so many who have diligently prayed for her! She hadn't had her nap because of the time and therefore was a bit ornery :) She was so loud, but somehow I don't think anyone minded! We are so blessed to have such an incredible church family!

my family of three!

praying!

me and my girl!

Daddy and his princess!

thank you all for continuing to pray for miss Ella!

Ella's First tooth!!!

2011-05-11T17:59:00.000-05:00

About a week ago I got some very exciting news!! I FINALLY know EXACTLY how much Ella weighed and how long she was when she was born!!! For some strange reason Texas doesn't put that information on the birth certificate, then when I called the hospital to ask they told me it was private information and they couldn't tell me! I was shocked, and nearly in tears after pleading with them and explaining that the reason I hadn't got the information right when she was born like every other mother was because she had been whisked into surgery right away. I knew they had weighed her because they had to know her weight to give her the right amount of sedation medication. I said "but I'm her mom, I have her social, my social,... please I just want to know her weight and height!" "I'm sorry mam, that is private information... etc." ARG!!! "So you're telling me that this information that isn't even private that every mother is told right away you can't tell me?!" "Yes mam, that's what I'm saying" "I really don't understand, isn't there anyway I can get the information??" After a long debate... " Well you can request a form, fill it out, mail it to medical records, and there is a fee." " I have to fill out a form, mail it in, and pay to find out her weight and length?" "Yes mam" "Are you serious?!" "Well your pediatrician may have that information on file." "So I DO have another option?" "You can ask." Well I did try, I called the front desk of the pediatrician and as I suspected they didn't have that information on file, and they could only request it from medical records if I came in person and showed them my ID. So the next time Ella had an appointment I asked the doctor and she told me she would get it!!! About a week later as I was walking through a store, my phone rang, it was the nurse calling to give me the information I had requested! I grabbed a pen and then, I heard for the first time, what I had been waiting to hear. " 7lbs 4oz. 19 3/4 inches long" I felt like I had just been given a moment that I had missed! I was beaming with pride and nearly burst into tears right there! After such effort and 8 1/2 months I thought I may never know, but God is so good! I couldn't believe it! So although this information may seem small, I feel like it is such a great gift to know! Never take the little things for granted!

Also, I have a picture of Ella's first tooth! It's tiny but it's SO cute!

Then...Now

2011-05-08T19:01:00.000-05:00

Mother's Day 2010

Mother's Day 2011

Thank you Jesus!!!!
Had to laugh to keep from crying today, oh how very very much I love her!

Mother's Day / Ella turns 9 months!

2011-05-06T11:39:00.000-05:00

So much flying through my head these last few days! Mothers day is just around the corner as well as is Ella's 9 month birthday! Also plans for for Ella's first birthday party are in full swing! Crazy isn't it?! Ella has just seemed to grow up so much in the last few days! She has OFFICIALLY...... FINALLY cut her first tooth! Although she is not crawling or pulling up yet, she (with assistance) can stand up! She is learning to stand up in her exersaucer too!! She is sooooo much fun!!!!! All day long I'm just like "this is RIDICULOUS! I love her SOOOO MUCH!!" She wakes up at night from time to time for her passy or a drink from her sippy cup, but for the most part she sleeps great! I really like it when she sleeps 12 hours solid multiple nights in a row, it makes me feel so rested! Last mothers day was my first mothers day! I was 6 months pregnant and SICK. I remember wondering if it would be the only mothers day I would get to celebrate. Here I am a year later feeling so blessed, wow, I'm a MOMMY!!!! I LOVE IT! Many times I have thoughts about what I would do if Ella was to die, wondering if I would really be able to keep going. I usually try to remind myself that God is Good, that He alone will meet all of my needs, that everything He allows He works together for good. When that answer isn't good enough for the painful thoughts, I simply say to myself, the Lord hasn't given me the grace to walk through that because He hasn't asked me to walk through that, If someday I must "walk through the valley of the shadow of death" I can't imagine, but I KNOW He will walk with me. As I felt the sting of pain even with the thought of losing her, I began to think of all the mothers that have lost a child. How very hard that must be especially on mothers day, I began to pray for all the mothers that I know who have experienced loss. I prayed for the pain they must be feeling, I prayed for peace. You see I know a lot of people who have lost children, and it breaks my heart. This situation I have found myself in has opened my eyes to so much suffering, I'm not sure if I was naive or just selfish before, but I had know idea how much suffering and loss there is in this world. I am grateful that my eyes have been opened, yet sad at the reality that is life. So to all the moms that have lost a child, this mother's day know that you are being lifted up in prayer. Everyday has such meaning when I realize all I have to live for! No life is worthless, every life makes an impact on the world. I may be home most everyday all day, I may have very limited contact with others, but I am making a difference in my husband's life and in my daughters life. I have no doubt that not one moment of caring for Ella is a waste, because I KNOW the Lord will use her in great ways! It is my honor to love and care for her. The Lord choose me to be her momma, and even though I feel so insignificant to fill my roll, I remember that He has a plan! I hope I can be half the mom to Ella that my mom has been to me, Love you Momma!!! I am really looking forward to celebrating mother's day this year, knowing that everyday is a gift and that being a mother is truly the greatest honor I have ever been given! Happy mothers day!

To my sweet sunshine,
Ella Dawn you are such a joy, you bring a whole new light to life! You are strong, you are a fighter, you are a conqueror, and I am so proud of who you are becoming! You are almost 9 months old, and although it seems like it has flown by it also feels like you have been here forever! Everyday you bring so many smiles into our home, you remind us that God is real, that miracles still happen, that prayer works! You are growing and learning, you are the best baby I have ever seen! Truly I am honored to call you my daughter. I pray you continue to grow more everyday, that your heart will keep beating strong, that you will know how very much I love you, and that you will feel God in your life. Jesus will ALWAYS be with you my Ella. Happy 9th month birthday, I love you forever like you for always
~ momma

He is RISEN!

2011-04-24T20:23:00.000-05:00

Christ the Lord is risen today! Hallelujah!! As a christian this is truly an incredible holiday! This is the day we celebrate Jesus rising from the dead 3 days after His Crucifixion!!!! What an amazing gift!

This was Ella's first Easter and even though I always want her to know the REAL reason we celebrate, we still had some fun with egg hunts and bunny rabbits! :) Here are some pics. to show off her first Easter!

We had a great day together, we just sat around in comfy clothes, watched Ella's new veggie tales and some of my "I Love Lucy" DVDs. We had a big pot of homemade chili to warm us on this stormy day. It hasn't stopped raining all day, we even had hail a time or two! Yet as usual Ella made it feel like a sunshine day :)

prayer requests!

2011-04-21T20:33:00.000-05:00

Well friends although Ella is doing very well, we have just discovered we may have a new hurdle to jump with her eating. She does well with milk and stage 1 or 2 baby food, but she has a STRONG oral aversion to anything with texture. At first I just thought she didn't like fruit puffs, so after some friends suggested Cheetos and her pediatrician suggested the same we gave that a try still the same reaction gaging/vomiting. Of course being on a ventilator 3 times we knew this may be a problem with her eating, but since she had been doing so well we felt like we may have dodged that bullet. So this seems as though it may be a long road and we may consider speech therapy (they work with helping babies with oral aversion) but in the mean time I ask that you be lifting her up in prayer as she endures such sever anxiety. I also ask that you pray for wisdom for Jon and I as we enter this new journey with our heart baby. We know this life will be full of new hurdles and we can't even express how comforting it is to know so many of you are lifting Ella and us up in prayer! Also on a side note Ella and I have caught a mild stomach bug :( Not sure if it really is mild or if it's about to hit hard, we are praying for the first! This is Ella's first time to be "sick" and although so far it isn't hardly bad enough to mention, it is scary. Mostly because we see the results of us starting to let the outside world in or rather us venturing out into the outside world, and well quite frankly it's hard!!! On another side note, Ella has gotten so much more mobile lately, meaning she is rolling all over the place, she also is starting to repeat the sign language for "all done", and she waves bye bye!... and... SHE SAYS "MOMMA"!!! I had to wait 8 months, but it was worth it :) Anyway that's it for tonight, thank you all so much for praying... these requests may seem small to some, but they are so important to us!

P.S.
As I'm typing this I can hear our little sunshine over the monitor, she is in her crib making the sweetest sounds! Just thought you'd like to know! :)

Update on Doctors visit!

2011-04-20T18:13:00.000-05:00

Ella had her pediatrician appointment on Tues, and she is getting caught up on her immunizations :( So she had to get a shot, she was so brave! I was wondering how she was doing on just "normal" baby things, so it was good to get up to speed on what she should be doing and eating! I was relieved to know that we are doing almost everything just as we should be!!! Big sigh of relief for this first time momma! She is small for her age but she is following a growth curve so they aren't concerned. Also it is common for heart babies to be small anyway. She is just over 8 months and she is weighing 16 lbs. 3oz. and she is 28 in. long! Due to her 3 hospital stays, and all her recovery time she is expected to be set back with her development (crawling, walking etc.), even though her mental state is normal. So her doctor asked all the questions concerning her current abilities and to our surprise she was completely on track on one category, and she was just under normal for her age on all of the others! It was a great report!!!! The doctor was VERY pleased and so were we! Then today Ella had her cardiology appointment and she had great sats, great blood pressure, great EKG, great echo cardiogram, and we don't have to go back for 4 MONTHS!!! Yahoooo! They said to still be cautious with her because we still want her to stay as healthy as possible, but as far as her heart health all is great! Now we just have to do our part to keep it that way! Thank you for your continued prayers for our sweet Ella Dawn!!!

Ella's heart friends:

Please be praying for Charlotte http://tousey.wordpress.com/ , she had her last open heart surgery today (this will be Ella's next surgery)

Also Please keep miss Emma http://www.emmajanae.blogspot.com/ in your prayers as well, she is still waiting on her heart transplant, but she is doing so much better then expected in the waiting process!!

Happy 8 months Ella Dawn!!!!

2011-04-09T21:23:00.000-05:00

Wow 8 months... how did that happen?!? Regardless of how fast it went by, it has been FILLED with countless sweet memories! Ella is doing remarkable, she is off oxygen and is showing no signs of any complications! She is on aspirin (thins blood to help heart function) , enalapril (blood pressure) , prevacid (stomach ulcer) , and Maalox (acid reducer). She is not even wearing her heart monitor every night anymore!!!! That is exciting because it is a step forward, but scary because we don't have an alarm that will go off if something goes wrong. It hadn't sounded in several nights but being able to glance down the hall from my bed and see her heartbeat and her heart rate and her oxygen number somehow gave me peace of mind. I guess I can't always have her on a monitor... so we have to Trust. Trust that she will be ok, trust that God will wake us if their is a problem, trust that this is a good step!

I want to ask you all to keep this family in your prayers tonight http://reflectionsbykrista.blogspot.com/ This little girl has HLHS. She is also 8 months old and has been in the hospital since she was born waiting on a heart transplant... as of 4am this morning a heart has been donated to her! I cried as I read this I was so happy for this family, but I also cried because I was sad for the family that lost their baby today. I was moved by their generosity to donate their sweet babies heart, knowing that one day we may be waiting on a heart and the gift of a life for a life. Please pray for the two families involved in this situation.

Well here are a few pics. to comemorate 8 months of the unbeliveable blessing that the Lord has givin us!

Ella's first pony tail! :) Her Royal cuteness

2011-03-30T16:27:00.000-05:00

Update = PRAISE

2011-03-23T15:03:00.000-05:00

At Ella's cardiologist appointment today we received some incredible news... her right diaphragm is no longer paralyzed!!!!! Jesus has healed her!!!! Jon and I noticed a few nights ago that her sats were really high and she was sleeping, so the next morning I checked her breathing and it looked great to me, then Jon looked at it and it looked good to him too! We were almost positive that it had come back and she hasn't needed oxygen even at night since then! We were hoping that the appointment today would confirm that indeed it had fully come back and will NOT require an additional surgery... and it was officially confirmed!!!! Tomorrow marks 10 weeks since her last open heart surgery and she is doing PERFECT! She gained a pound and a half and grew an inch! The cardiologist said She looked perfect NO COMPLICATIONS!!!! Oh what a WONDERFUL thing to hear! She is still of course at risk of getting sick, so we will still have to take strong precautions especially through the end of the flu season, but overall this is a huge step! We will be able to slowly start seeing more people and going to some events as long as we are cautious, of course Ella is still off limits to other people ESPECIALLY KIDS! But we are VERY encouraged at this new "freedom"! Thank you all for your continued prayers! We ask that you continue to pray for her and our protection from germs and sickness, we also ask that if we come in contact with you in the near future that you make sure that you are not sick at all before approaching us, we have come so far and we don't want to backslide now!! I hope you can all understand how grateful we are for your support, prayers, and understanding with the boundaries! God has been so merciful to us, praise Him, praise Him, praise Him!!!! Have a wonderful day in the Lord!!

Enjoy your Sunday!

2011-03-20T13:44:00.000-05:00

Ella is learning to put some weight on her own two feet!

Our pretty sunshine!

Playing outside with her daddy!

Ella went all night without her oxygen and her alarm never sounded! Her sats stayed in the low 80's (PERFECT) !!!!! Her next cardiologist appointment is on the 23rd, we are ready to see how her diaphragm is doing even though we can tell from her oxygen something is getting better! Keep the prayers coming, God is answering them!