Wednesday, December 10, 2014

Update on Ella's appointment today

We are home from Dallas, thank you for praying. Ella did well at her appointment today, her anxiety was very low and she didn't have to get any "needles" so that made for a much more enjoyable trip for our girl! 

Ella had an x-ray which shows significant improvement from before, but still not where she needs to be so that unfortunately means we have to continue the treatments at home that leads to lots of tears. :(
Although the x-ray is showing improvement, Ella is not. That leads us to possibly more testing. 

Ella is still having a lot of pain, low appetite, low energy, low oxygen, high heart rate, and weight loss. At this point, we will continue to treat the bowl issues and also her GI doctor wants to switch her acid reflux med to hopefully help more with that, he also thinks she should have an endoscopy under  anesthesia in the near future. He feels like it would be good to have just to rule out any other possible problems that could be playing a role in her symptoms. This is a very simple scope, however anesthesia is always some risk and adding her cardiac history it makes things a little more risky, but it may need to be done. He also wants us to try to get more calories in her to help her gain weight, while continuing her high fiber no dairy diet. 

I will be talking to her cardiologist about the endoscopy and the med switch up to get his opinion before we make our final decision on what step to take next. Please continue to pray for wisdom, protection, answers, and healing as we walk this journey with our sunshine. 

We know that even though her team is not sure what all is going on in her body, our God knows it all perfectly, we try to rest in that. We thank you for your continued prayers. 

For those of you praying for Ella's heart friend,Emma, her surgery went well today, praise The Lord!!! Please continue to pray as she recovers from this surgery and her body tries to adjust. 

Tuesday, December 9, 2014

Heading to Dallas again.

Tomorrow, Dec. 10th, we will be heading to Dallas yet again. We will be seeing Ella's GI doctor this time. Ella is just not improving the way she should be, and she has begun to have some mild "episodes" again. Please pray we get this figured out. Her oxygen sats are still okay but lower then we would like with any activity and she has some significant exercise intolerance at this point that she "shouldn't" be experiencing since her last surgery. 

Please pray for safety in travel, safety from germs, wisdom for us and the doctors on Ella's team, Ella's anxiety level to be low, and for healing for our girl! 

Also a huge prayer request for our special heart friend Emma! She is in Boston and the plan is for her to have major open heart surgery tomorrow. This is extremely high risk! Her and her family are so dear to us. Will you join us in praying for them tomorrow and the days following? You can follow her updates on her blog and you can share her blog for your friends and family to pray as well! She needs lots of prayers for this next step in her journey! 

Thank you friends. 

Wednesday, November 26, 2014

GI appointment update

First of all, thank you all for praying! We love the Dallas Heart team and our first experience with the GI team was just as great! The doctor fell in love with Ella (who wouldn't?) He said she knew more then the 6 and 7 year olds he sees and he said she just "made his day"! I love how much sunshine she spreads all around her! While we were waiting to go back she sang "let it go" from frozen and I looked beside me and saw that several people were watching her with smiles on there faces and I thought "I'm glad she is making people smile". You never really know if your kid singing in public is a good thing or if everyone else is wishing your kid would be quiet hahaha but the smiles confirmed that she was being enjoyed and I love it when other people get to enjoy her sunshine spirit!

Now on to the update. It was again confirmed that Ella has some severe blockage that needs to be dealt with, so we will be trying some new, more intense treatments here at home and adding some daily maintenance meds. Please pray that this works, it's not going to be fun for Ella and we don't want to have to do it again. Since tomorrow is thanksgiving we plan to wait and start this new treatment plan on Friday and it will go through the end of Saturday or possibly all day Sunday as well depending on how she is doing. From there we will start a new maintenance routine. Also she had some labs drawn to rule out some things but we are still waiting on those results, and can I say she was SO brave during the blood draw!!! I'm sure some of you were praying specifically for her to have peace so thank you! We hope this new plan works and gets our girl well on her way to feeling better. We will follow up with the GI doctor in 3 months.

Again we thank you all for the prayers, we really felt like we were in the right place with the right doctor and he is very optimistic that we can get her feeling better soon! Please continue to lift Ella up in prayer as we try to ease some of her pain and hope this takes care of all the other issues going on in her little body.

Have a Happy Thanksgiving! We are thankful for the Lord and His unfailing Love, we hope you have accepted that Love too! We hope you have a wonderful day remembering His goodness! So many things to be thankful for, even amidst all the pain and suffering in this world. Even Jesus said "Here on earth you will have many trials and sorrows. But take heart, because I have overcome the world." John 16:33. What a beautiful savior we get to cling too! He has already overcome this world and all the pain it brings. He will restore and redeem it all one day, and what a wonderful day that will be if you choose Him! After all, He has already chosen you!


Tuesday, November 25, 2014

Radiology and Urology update

Ella is still not close to where we need her to be as far as bodily functions.

I called the urologist yesterday and talked to her nurse and told him that we wanted to come in for another appt. and we wanted to go to radiology for a full, more detailed ultrasound of her bladder and kidneys. He told me they couldn't see her for that until her next appoint that was scheduled for the end of January, but after talking to him for awhile he told me that we could be seen at a different location on Dec. 1st. the only problem was that we needed to have an ultrasound done at children's radiology before then to have the results for the appointment on Dec 1st. Once he talked to radiology he told me they could get her in the next day at 8:15am and there was a possibility that after that they may be able to try and see her in urology instead of waiting until the 1st since we would already be there.

Early this morning we headed out to children's here in Oklahoma and had the ultrasound done. When it was finished we called urology to check and see if they could fit us in, after some phone calls they told us they could fit us in at 10:30am. We went to a secluded waiting area and I while we were sitting there Ella's cardiologist called me. I caught him up on everything again and he agrees with me that something is definitely not quite functioning properly in Ella's body. As far as a cardiac standpoint goes she is looking pretty good so he wants us to change a dose on one of her meds and then see a GI (gastrointestinal) doctor as soon as possible before perusing more cardiac testing.

Once we got back to see the urologist she told us that Ella's ultrasound is still showing a major problem with constipation (despite her going everyday sometimes twice a day) and her urine is showing dehydration (despite the 20-40 oz. of water she drinks a day). We have to continue to be aggressive with treating those things. Some of Ella's other symptoms the urologist told us, are not typically side effects of constipation, so we know something else may be playing a role in her not feeling well and losing weight, which is why we need to see GI as soon as possible.

When I was talking to Ella's cardiologist today he told me that we could see a GI doctor here in OK or there in Dallas but to just go to the first available appt. I called Dallas GI and they told me the soonest they could see her was Dec. 30th. We knew we wanted to be seen sooner so we talked to the GI here about scheduling to see if we could get in sooner. They said the soonest date they had would most likely be February... um no...just no. So I called Dallas back to tell them we would take the Dec. 30th date and to ask them to put us on a cancellation list for the possibility of a sooner appointment slot. The man told me that about 30 min before I called they had had some new openings and that they could see her, ...get this,... TOMORROW! I just knew that God's hand was in that and knew it was the power of all the people praying for her today!

So with that said, we will be off early in the morning heading to Dallas to hopefully get some answers or at least closer to finding a way to help our sunshine feel better! We appreciate your prayers more then you will ever know. Please continue to pray for us as we search for answers, please pray for protection from germs, travel safety, wisdom, and strength. We are all a little  lot tired of doctor's offices and appointments but mostly we are tired of not being able to fix our sweet girl's pain. Thank you all for your continued love and support to our family, this road is not easy, it is scary and full of unknowns, but having so many people praying for us is humbling and it makes us thankful beyond words.

Tuesday, November 18, 2014


Ella hasn't had any "episodes" since the 13th so that is great! She is still not where we want her to be with her oxygen and heart rate, but is doing okay. Her bowl track is still not back to normal but we are doing our best to work through that. We still aren't positive what all is going on, but she seems to at least be moving in the right direction and is not getting worse at this time. Thank you all for continuing to pray for our girl, we look forward to her feeling completely better, hopefully soon.

Friday, November 14, 2014


Ella's urology appt went well yesterday and we have a plan in place to hopefully mange the UTIs better without the constant need of antibiotics.

She is still having "episodes" and some low oxygen with high heart rates. 

We thank you for your continued prayers as we try to find answers! 

Wednesday, November 12, 2014

Emergency Dallas Visit

Starting Mid September Ella had her first "episode". It started after a full day and a half of playing outside. She hadn't eaten much, she usually doesn't when she is away from home, or even if we have guests over so it wasn't too uncommon. She said her mouth hurt on the way home she started to look sick, we thought she was just tired and hungry. We walked in the front door and got settled in before she threw up, quite a bit. She was pale and weak and said she needed to rest. We watched her closely and got her some food once she could eat and then in bed. The next morning she was a little extra tired and she took a good long nap that afternoon but by evening she was completely back to normal. We know that with her special heart she will have quite a few limits as far as how much activity her body can handle and we felt like she had just overdone it playing so much.

Over the next two months Ella has continued to have these "episodes" and now they are happening more often and with less activity. We talked to her cardiologist about it at her last check up on Oct. 10th. It had happened a few times by then and since her heart looked good he told us to just keep a close eye on it and to go ahead and to continue to let her self limit her activity and let him know if anything changed or got worse. He told us that as she gets older we will begin to see her limits more prominently especially as she begins to play with other children. The gap will grow between her stamina and theirs. I understood what he was saying but still felt like these episodes were happening far too easy even with her special heart.

As the next month has gone by things have gotten worse, her energy level is lower then before, her eating has gotten worse, and an array of other little things that all add up. I have been in contact with her cardiologist about them and her regular doctor. They both agreed that it could possibly be her acid reflux flaring up so we doubled her acid reflux meds and waited for it to work but to no avail the episodes continued. What started out happening once every few weeks has progressed to having these episodes every few days and sometimes even multiple times a day.

She has also been dealing with UTIs and we can't seem to get them to go away so we are needing to see a pediatric urologist to try and see if there is a structural issue. She has started her 3rd round of antibiotics which is really bad for her. Not only do antibiotics kill the good bacteria along with the bad, but in her life she will need many antibiotics for everyday things like teeth cleanings and ear piercing etc. because infection is too big of a risk with her heart. Not to mention the major things like surgeries require lots of antibiotics and the more antibiotics she has the higher the possibility that her body will begin to build immunity to them. That is dangerous because in the case of a serious infection we lose the ability to treat it as successfully. These UTIs may somehow be playing a role in these "episodes" but we don't know yet. She is also currently battling her first cold of this season. So far she seems to be handling it very well and it seems pretty mild, for that we are so thankful.

 On Monday the 10th of November she began to have one of her episodes and just wasn't feeling well. By Monday night she was in pretty bad shape and we had been in contact with her regular doctor and her cardiology team and everyone agreed her symptoms needed to be addressed and we needed to take her to an ER. Jon and I were torn, the ER is one of the worst places to take a heart child because of all the sickness not to mention, we aren't comfortable with OU children's hospital because of previous bad experiences and they don't have her cardiologist or her history on file the way the Dallas Children's hospital does. We knew she needed to be seen but didn't know if she could wait until morning to go to clinic and avoid the ER or if we needed to get her in immediately. One of the strange things about these episodes on Monday was that in between them she seemed perfectly healthy and during them seemed very sick. We decided to pack up and head to Dallas for the night and that way we would be near a good ER if she got worse and if not we could take her to her clinic first thing in the morning. Our fear was getting on the road and ending up in an emergency with her in the middle of nowhere between here and Dallas.

The drive was scary, about half way there things really took a turn for the worse and she was very very very sick. She had two major episodes on the way down there and it was so hard. I thought we had made a mistake trying to get her there, I didn't know if we could make it in time. Finally we saw the Dallas sky line and in record time we made it to the Hospital. The cardiologist had called ahead so we were able to get back right away despite the overwhelmingly crowded waiting areas.  We arrived around 11:45pm. After several hours the ER doctor said they were planning on admitting her because of her symptoms but by then she seemed to be somewhat recovering from the episodes. They did chest x-rays and abdominal x-rays, they did labs (so sad) and everything was looking pretty good. The cardiology floor got really full and they decided around 5:30am that since all the tests were coming back clear that we could be discharged and come back in at 8am for clinic.

 By that time we were tired, cold, and discouraged that they hadn't found anything and that they weren't going to keep her for observation. We got to our car and knew we had to be back inside in 2 1/2 hours, we didn't have time to go to a hotel so we just tried to take a nap in the car. Ella was crying to go home, she was scared and didn't feel good. We had all been up for over 20 hours. We dosed off for little bits at a time. Jon and I were sharing the driver seat and as you can imagine it was not comfortable, but never the less we were grateful for a little bit of time to rest our weary bodies. I did my best to make a little bed for Ella in the passenger seat, I desperately wanted her to feel safe to feel comfort. I wrapped her up in a blanket from home and pulled out her special stuffed animals and water cup from home. We tried to make it feel fun, telling her how silly it was to sleep in the car until the sun would come up, but inside I felt completely at a loss. I felt almost homeless, I was scared for Ella and sad that she has had to go through so darn much in her life. I felt like my body was giving up on me and that I had to keep going. Ella was curled next to us with blood stained jammies and bruises on each hand from the blood draws that were so much harder emotionally for her then physically even, her hair was tangled from the anxious sweating she had done that had made her hair wet. The sun came up and it was time to go back inside, our bodies were cold from the front that had come through and we warmed up by the heater and tried to freshen up before our appt. Ella cried, she didn't want to go back in, neither did I, but I knew we needed to.

We made it to the clinic and we checked in. Ella had to pee in a cup and it was the first time she had gone potty in 12 hours. She had an Echocardiogram and an EKG she was terrified, but was so brave and we were able to see everything we needed. After that we saw the on call cardiologist since her normal card wasn't in clinic that day. He was a kind man and listened to all of our concerns and checked Ella, before telling us that they had found nothing. Every single test was normal. Her abdominal x-ray showed that she had a lot of poop but other then that nothing. I wanted to cry. It wasn't that I wasn't so thankful that they didn't see anything wrong, it's just that now we have no answers and we have to keep searching. So he told us he didn't know what else to do at this point. I told him, I know she looks good right now, I know she looks good on paper, but I'm her mom and I'm telling you something is wrong and if you had seen her last night you would have been very concerned. He told me he believed me, but he couldn't do anything else because he had nothing else to try. I know he's right, I just hate not knowing what's going on in my baby's body and at the same time knowing something is wrong. They decided to send Ella home with a 30 event monitor to check for possible arrhythmias.

 Once we left the clinic I did cry. I was tired and frustrated at the lack of progress after all Ella had endured. I was scared to go home, what if this happens again. Then what do we do. It's getting worse and I don't know what will happen to her next time. I don't want her to have to wear a monitor for 30 days it scares her and it's a pain. I felt like they weren't listening to me. I have learned enough in this heart journey to follow my "mommy gut". This isn't the first time Ella has been having problems only to show all normal test results and I  had to push until they found the problem, and there always is one.  We got in the car to drive home all of us utterly exhausted, we hadn't eaten more then a few bites in nearly 30 hours and I didn't feel much hunger because my heart and mind were burdened but I knew we needed to try to eat so we stopped to get some food to go. While we were there we hooked Ella up to her new monitor and sent in her first baseline test to the EKG department. I'm glad we did because less then 30 min. later it started again, she lost her color and began to look very sick we pushed the record button on her monitor and took 3 recordings before sending them in. I called the EKG department and told them what had just happened and asked them to read them right away before we left Dallas. They called me back after they checked them to let me know the tests were normal. Another dead end. I will, as usual, not take no for an answer.

Our next step is urology to get her UTI under control and find out the cause of those. They told me they couldn't see her until January even though she was referred by her Primary Care Doctor. I told them there was no way she could wait that long, after talking to them for a little bit they said they could see her on Nov. 17th if we were willing to go to a different campus, I said we would take it. A few days ago I decided to try to get her in sooner, so I called back and asked them to put us on a cancellation list for the possibility of a sooner appt. After our Dallas trip I felt more urgency then ever to get her seen ASAP. I got a call this morning from them, they have an opening for her tomorrow. The exact time slot we wanted before I ever even got the first appt. scheduled. It's just like God to make that happen. I needed that. Jon and I were just talking on our drive home from Dallas how confusing it is sometimes that God's timing seems so "off" to us. Like how Ella never had her "episodes" in front of any of the doctors. We talked about how our idea of good timing and His don't always line up and how we love it when they do. Then this morning happened. I didn't have to call them and beg again, they just gave it to me, the perfect time slot for Ella.

 We appreciate your prayers as we continue to push for answers and go through more testing. Pray that God would give all of Ella's many teams of doctors wisdom and that He would touch Ella's body and give her healing and peace. That He would continue to guide Jon and I as we make decisions for her and protect us all from germs this flu season. Thank you all for supporting our family in this journey. We feel so blessed to have so many people loving and praying for our sunshine. In her four years of life we have only ever made two emergency late night drives to Dallas ironically they were four years apart to the week. Jon and I talked about how thankful we are that Ella has done so very well with her special heart. We know that God is in control and even though we feel fear, we know that He will never leave us or forsake us!

Wednesday, October 8, 2014

4 years since Ella's second open heart surgery.

* This post was written on Aug. 23rd

4 years ago today we sent our 2 week old baby girl into her second open heart surgery. It was several hours long and when she came back to the room her chest was open and we could see her heart beating inside. One of the hardest things I've ever seen. This night, we almost lost her. The doctors told us "this is very bad". Ella's heart rate was way too high and they couldn't even get her external pace maker to help. They brought in a bypass machine (ECMO) that essentially takes over for your heart so it can rest. Although this is an incredible machine it can do severe damage to your other organs and is used as only a last resort for those who will die without it. Once on ECMO it is hard and risky to ever come off. While we were waiting for the surgeon to arrive and put her on ECMO the doctors gave Ella several doses of a medicine they call poison. It is very bad for you but can save your life in desperate times. They had given her several doses back to back until they maxed out the 24 hour dosage. They called a specialist and asked if they should give her another dose. The specialist told them not to give her anymore or she could die. They told her if we don't she will probably die, they told her that she was going to be put on ECMO as soon as the surgeon could get there if they couldn't get her heart rate to slow down. The specialist said ECMO, as risky as it is would be better then giving her another dose of this medicine. The surgeon said giving on more dose of medicine would be better then ECMO. We were at a crossroads. Our baby lay dying, doctors and nurses packed in the room doing everything they could. We only had two options, one more dose of poison that could very likely kill her, or the ECMO machine that again could likely kill her. The doctors decided to take the risk on the medicine, it was available where as getting her on ECMO would take more time (it is a surgical procedure) we were running out of time. They gave her that last dose of medicine and we all just watched helplessly. The Dr. Came over to us, and told us the situation. He had seen us praying and asked to pray with us because that's is all he could do. The three of us prayed together and when we said amen Ella's numbers began to slowly become more stable, the doctors and nurses were shocked and excited. She was far from out of the woods, but she had avoided ECMO and she was still fighting. We are so very thankful. 

Heading to Dallas soon

We would appreciate your prayers for safe travels and protection from germs as we head to Dallas on Friday for Ella's check up. This is supposed to just be a routine check up, but we do have a few concerns we plan to talk to her cardiologist about so prayers for Him to have wisdom are also appreciated. Overall Ella is doing very well and we are just so thankful for your continued prayers, especially as we head into the flu season and all that comes with trying to keep our girl healthy.

Saturday, August 16, 2014

4 years ago today Ella had her first open heart surgery.


4 years ago today was one of the scariest days of our life, we sent our one week old baby girl into her first open heart surgery. She was so very sick. Fragile. In fact we knew she may not make it out of surgery. God's timing is perfect, because on the way down to the OR, while she was surrounded by nurses and doctors, Ella crashed. They were able to stabilize her enough to try the surgery. Once they got inside, the surgeon realized that her lungs were more damaged then they realized. They were far too weak to support a sick heart. He decided that she would need a heart transplant. Before sewing her up her surgeon had an idea. He decided to try something he had never done before, he did a surgery that would help control the blood flow to her lungs in hopes that they may begin to heal and that possibly she may be able to keep her native heart or at least buy her more time to wait for a new one. We were totally unaware of all the changes that had taken place and we were anxiously awaiting an update call that was an hour over due. When we finally got the call from the nurse in the OR that we had been waiting for, instead of hearing that everything was going as planned, we were told that we needed to go to the consultation room and that the surgeon would be in to talk with us. Ella had only been in the OR for about 3 hours and was supposed to be in there for several more hours. We feared the worst. When he came in he told us about Ella crashing, about her lungs being worse then they thought, and he told us about the experimental surgery he had done on her heart. He told us that we needed to begin the transplant process and prepare to go that route in case this did not work, he then told us that he was concerned that her gut was dying. I asked what that meant for her if her gut died. He said that she would die. Although that day was showered with scary unknowns, I still remember feeling bits of Peace and Joy throughout the day because of God's mercy and the thousands of prayers sent on our behalf by you all and so many strangers around the world. Today my big 4 year old is painting at the breakfast table. We believe in miracles, and we have one to celebrate everyday! I thank The Lord for His Mercy in saving our sweet Ella Dawn, in giving us 4+ years already with her. What a beautiful gift! 

Ella had a wonderful birthday and we are all on the mend from that pesky summer cold, thank you for the prayers! 
These are our traditional last day before her birthday pics. 

8-9-10 our Birthday girl!

8-9-14 our Birthday girl! How far she has come! 

This last week Ella started dance class again! She is excited! She looks so grown up! 

Tuesday, August 5, 2014

Quick update and prayer request!

Ella's 4th birthday is this Saturday and we are SO excited! Ella has been counting down the days for the last month and we have a big cake coming through the icing smiles organization again this year, plans for a party... only one problem, we are all sick :(
 Somehow we caught a summer cold the beginning of last week and we are all still a little stuffy. :( Ella is handling it like a champ and her symptoms are not too bad, some coughing and a little bit of a runny nose. Jon also has pretty mild symptoms, it has actually hit me the hardest. I have a pretty bad cough and things seemed to have settled themselves in my lungs. All in all the most important thing is that Ella's body seems to be fighting this well! We would just be so thankful if you would lift us up in prayer for healing from this cold. We want so badly to celebrate Ella's birthday with friends and family, but we will celebrate big even if it's just us 3! It would just be icing on the cake if we could feel well at her celebration! Thank you all for being so faithful to pray for our family! Here are a few recent pics of our sunshine!

Tuesday, July 8, 2014

A little catching up and a prayer request.

I'm so sorry I have not been as consistent in my updates lately. Our computer has not been working well and that makes it difficult to post updates and pictures.

Ella is doing well, we are in awe of her strength and the quality of life she is having despite her heart. Jon and I are enjoying this phase of life with her as we know it will most likely be "the best years of her life". We know things can go down hill quickly when her heart or other organs start to wear out. Ella will be 4 in a month and I can't believe just how fast it's going by! Just this last month I got news of a 20 year old girl with HLHS who had passed away suddenly. It hit me hard. Ella was napping when I saw the news and so I was able to cry about all that we are facing, to pray for this girl's family, to have a talk with God about my fears, about the pain of the reality of the death of my little girl in my face all the time. Those break downs aren't as often as they used to be, but when they come, they hurt so bad. I had to go into her room and snuggle her while she slept just to feel her breathing. It's so scary.

This summer has been pretty mild temperature wise for us and for that I'm thankful. Ella doesn't do great in the heat, so with the milder temps she has been able to get out a little more. She got to go to her first ball game! Some of her little friends from our small group are on a tee ball team and she got to go watch one of their games! She also got to swim in a big in ground pool for the first time at a Sunday school cookout! She is getting more and more opportunities to play with other kids if they are healthy and even had a play date here with one of her little heart friends and her friend's little sister! She got to go to her first wedding and now keeps asking if she can get married to daddy, kiss him on the lips and get pink flowers! She also got to ride in a basket at target for the first time (oh the germs, ewww! But we did wipe it down with antibacterial wipe first)! I never tire of seeing her do these new things! Each time we get to see her do something new I just feel an overwhelming thankfulness that she is here with us, still fighting, still thriving, still smiling! This last Sunday, we had a great time as a family playing on her fun blow up slide/pool and as Jon was throwing her up the bouncy slide and she was laughing with a huge smile saying "Again! Again!" My eyes welled up with tears of pure thankfulness. Humbled by the Lord's protection over her and the blessing of her life. Just seeing her SO happy, there are no words. Thinking back to the beginning, those early days of wandering if I'd even ever get to see her open her eyes so I could tell her that I loved her. Now she tells me that she "loves me MOST" and that "You'll be in my heart mom" a million times a day and I get to tell her two million times a day how much she means to me... but I still can't seem to even scratch the surface about how I really feel about her. Words aren't enough.

Over the 4th we went out to eat and then to my parent's house for a little fun. It always causes some anxiety on my part to bring her out in public, but she loves it and that gives me the strength to keep going. She has fought every bit as hard as we have and then some and she has a light to bring to this world full of pain and hurting people. She smiles and talks to anyone that will listen and watching her see new things for the first time is indescribable! Her eyes light up and she points to everything exclaiming "wow, cool, fun, beautiful, oh my gosh, I love it!" She has a zeal for life that is intoxicating. Just being around her is enough to make anything seem just a little bit brighter.
While we were out at my parents Ella got to do her first sparkler she touched the end after the flame went out and it was still hot so she got a tiny blister on her thumb :( she also got stung by something (we think) on the back of her leg but no tears or even an "ouch" came from her, just a pause and an "it itches" as she rubbed it a little. She is so tough! After that we headed back to our little town to watch the firework show! We actually watched two big shows this year, one a few days before the 4th and one on the 4th! 

Last night Jon took Ella on a little date, they do that from time to time and Ella LOVES it! I mean she gets SO excited!! It's always hard for me to see them go, the house is far too quiet when she's not here, but knowing what a treasure that time is to both of them is enough to get me through the silence. Jon may love it even more then Ella if that's possible, it is so adorable how much they love each other! They came back with a toy of course ;) When she came home I noticed that she was a little more out of breath then I like and was a little dusky in her color. She has been dusky off and on here lately, but I finally decided to check her oxygen level and heart rate. The oxygen was a little low and heart rate was pretty high. This morning I saw the same symptoms so I checked her again and again her heart rate was too high and her oxygen was even lower then last night. I called her cardiologist's office and let them know about the situation. We have also seen a few small things that can be a concern that her liver may be having some problems (that has not even been discussed with her doctor yet, just something we are keeping an eye on, hopefully it is nothing.) So we are a little nervous about those things. We would appreciate your prayers for her doctors and for us as we try to discern what is going on and also for her to be back to a safe a steady baseline soon! Thank you all for continuing to pray for our family!

Wednesday, June 18, 2014

Mother's Day/Father's day 2014

Mother's Day 2014

Father's Day 2014

What an honor it is to be her mommy and her daddy!!!! 

Wednesday, June 4, 2014

1 year post Fontan!!!

1 year ago today we left our home to head to Dallas. We were to have pre op as soon as we arrived. The next day we would be sending our 2 year old in for her 4th open heart surgery. The emotions I am feeling as I reflect on the events that occurred that June day a year ago are mixed. I'm overwhelmed with thankfulness that Ella is here today and that she continues to blow her cardiologist away with how well she is doing, but I'm sad to think about all the pain she went through. It was a traumatic experience and so it's hard to relive, yet it is rewarding to think through the miracles that occurred. As we looked back at some of the pics this evening with Ella, she told us all the things that happened, she talked about her ouchies and the Ronald McDonald house, she talked about her red wagon rides the walking and watching Cinderella, " I was so brave", yes Ella, you were SO brave sweet baby! It's crazy that was a year ago, it seems so close and I guess it also feels somehow like another life altogether.

The Fontan was Ella's last scheduled surgery. Her future is now a mystery. We know she will need further surgeries eventually or possibly a transplant someday, but we don't know when or what. I couldn't wait for the burden to be lifted of not having anymore planned surgeries hanging over our heads! It was a relief for sure, but not knowing what's next is a burden too. Just one of those things I have to only allow myself to think about and not dwell on. I think about Ella's special heart probably over 100 times a day. That may sound obsessive, but I don't think so. It's just my new life. You see everything about my life changed when we heard those doctors words before he offered us an abortion. I knew then what I know now, Ella is special. Ella is a fighter, and she is proof that miracles still happen and that God is bigger then an 80% chance of death. God is bigger then her crashing twice. God is bigger then 4 open heart surgeries. God is bigger then the unknown. For as long as God grants us with our daughter and as long as she fights we are going to be fighting with her. 

It is such a big milestone to be celebrating being 1 year post Fontan. Preparing for this surgery was one of the hardest. Ella was such an established part of our lives and my companion day in and day out. Every moment with her was cherished and thinking about taking her to a place full of strangers holding her down while they had to hurt her, seeing her on a ventilator again, knowing they would stop her heart from beating and attempt to restart it hoping her body would accept the changes of her blood flow... all of would just take my breath away. I remember it was pretty cloudy that day, June 5th 2013, and as we set in the waiting room anxiously waiting for our hourly updates, every once in awhile the sun would come out from behind a cloud a shine so bright it would light up the room, I'd say "there's our sunshine letting us know she's okay" :) while I know she doesn't control the sun I do know the one who does and those peeks of the sun gave my heart a little joy on that hard day. 

When Ella woke up she was fighting to sit up. She was still on the ventilator and it took four adults to hold her down just about an hour or two after open heart surgery. They tell us the fighters often do well, that was our girl! She wanted to walk, she wanted to go home,  she wanted a potty because she was a big girl and big girls don't use diapers, she wanted water and cheese, she has pushed the expectations from the time she was born. Day two of recovery from her Fontan and she walked over 450 ft. Straight. Her strength and resilience is amazing and is no doubt a result of the thousands of prayers being said on her behalf. We thank you! 

The day we were released to go back to the Ronald McDonald house to wait for her follow up appt. she ran for the first time in her life. I cried then and I can't help but cry now as I think back to my 8 day post op little 2 year old sunshine running down the hall. She wasn't out of breath. It had been so long since she could even walk a short distance without dropping her oxygen into the 50s or lower, she was blue and couldn't catch her breath. Seeing that change immediately we knew we made the right decision. This surgery will drastically impact her other organs negatively, especially her liver, but life is about quality over quantity with her. While I want her forever, I would rather her have a shorter full life then a (possibly) longer life with major limitations from her own body. She still has and always will have limitations, but seeing her energy level raise SO much was amazing! 

Today when you look at her you would never know. She may not run fast and she may struggle to jump, but she is improving everyday and she blows me away! These are just a few of her accomplishments- She can count to 100, she knows her alphabet in English, Greek, and American sign language, she knows basic addition and subtraction, she knows Every letter and the sound it makes, she is learning to sound out words, she can write her name and a few other small words with some direction, she sings, she just finished her first group event ever with her semester of dance class (and was a Rock star on stage with NO stage fright), she is learning and growing before my very eyes and it is such a privilege to be her mommy! When God made Ella he made a beautiful inspirational story. I consider it an honor to share it with all of you! 

Isn't God so good? I know that God could have taken her and still He would be sovereign and in control, but for whatever reason He has thus far spared Ella's life and we are so humbled He gave her to us. I pray that you always see His fingerprints all over our lives as we strive to point to Him as we live this crazy up and down adventure called life. So as this day comes to a close I think back to 1 year ago today, I was laying my baby down to bed in the Ronald McDonald house and praying to God that it wouldn't be the last time I would get to tuck her in. Praying that she would fight. Praying that once again He would hold her in His hands while her surgeon worked on her tiny lifeless heart. Praying that she would understand that we loved her and hadn't betrayed her. Begging for His strength and peace. Tonight, 1 year later I get to tuck that sweet sunshine in bed and tomorrow we are going to celebrate! Celebrate life, celebrate God's mercy, celebrate miracles! 

                  {Running for the first time}