Monday, July 27, 2015

It's been 5 years



It's been five years since we left our little home, heading to Dallas to face the unknown of Ella's birth. In just a mere 13 days our miracle baby girl will turn five years old. I'm not sure how that's possible! Every year on this day I reflect because it's the day that everything really became a reality. Of course it was already our reality with so many doctors appointments, but this was the day we left our home and we knew that on that day, five years ago, when we came home we would either have a fragile baby post open heart surgery or we would come home with empty arms, an empty nursery, and broken hearts. Either way, we knew when we returned home our lives would be forever changed. We had no idea how long we would be gone or even if it would possibly end up being a permanent move to Dallas, depending on her condition when she was born. It was a scary day, I remember arriving at the Ronald McDonald house exhausted and still so sick from the pregnancy. Of course we will never be able to express our gratitude for the Ronald McDonald house and all that it provided for us while we were there, but it wasn't home. And we were there under very hard circumstances. It's not the way we wanted everything to work, and because we knew we may be spending our last 13 days with our baby girl I desperately wanted to be home with her. As I look back over the last five years I'm humbled by the miracles that God has done on behalf of our baby girl. It has been far from easy, there's been so much pain both physical and emotional, but worth every single second of sacrifice and tears. She is such a ray of light in our world, our sweet sunshine. We can't wait to celebrate her fifth year of life and hope for many many more! 

Saturday, June 6, 2015

Update on cardiology appt. and a special moment!!

Yesterday's appt went well! As always it was a long trip driving to Dallas and back in one day, but Ella was a trooper! Most importantly we got a good report on Ella's heart! Everything continues to look wonderful and we are just so thankful for each and every good report! Our next step will be to continue to pursue her GI issues with her GI doctor and we will see her cardiologist again in October! 

As you all know, yesterday was the 2 year anniversary of Ella's 4th open heart surgery. Celebrating that by being back in the hospital was not our idea of fun, but we made the best of it and had an incredibly special moment. Ella had drawn a picture for her surgeon of him operating on her, so since we were going to be at the hospital we decided to stop by his office to see if he was in so she could hand deliver it. Unfortunately he was in surgery at the time, so we gave the picture to one of the ladies that works in his office to give to him, but after hearing Ella tell her all about the picture we decided to go back to his office and wait for him to come back so he could hear for himself because it was just so cute!! When he came in Ella was able to give it to him and tell him all about it! It was just so sweet! It turned out to be a great way to celebrate being two years post Fontan after all!

Wednesday, June 3, 2015

2 years

I can't believe it's been two years since I got the call asking if we could be in Dallas the next morning for pre op and send our baby into her 4th open heart surgery the day after that. We knew it was coming, but we weren't prepared for it to be so soon. Ella needed the surgery and they had a last minute opening so we took it. It was emotional and stressful to pack for an unknown amount of time in one night. Friends went out and shopped for the things we needed and delivered them to our door late that night. We packed as fast as we could and tried to get some sleep before heading out early the next morning to face the long drive and an even longer day of pre op testing. It was all a bit of a whirlwind of fear and focusing on what needed to be done. There were tears as we drove away wondering once again if it would be the last time our family would ever be home together.


We drove straight to the hospital, we didn't even have time to drop off our luggage at the Ronald McDonald House. There were weight checks, blood draws, EKG, echo cardiogram, blood pressure check... but Jesus was with us and Ella was so very brave. By evening we left the clinic and went to settle into the RMH to spend our last night out of the hospital for awhile. We ate in the courtyard and played in the grass. I gave her as many hugs and kisses as I could and kept telling her that I loved her. We had done our best to prepare her for what the next day would hold for her, but how do you tell a 2 year old that they will be having open heart surgery... again. She was all smiles and beautiful innocence and although we couldn't see her sick heart beating inside her scared chest, we could see it affecting her. She was out of breath and her color was often blue as her oxygen would plummet as she tried to walk or dance or play. The scary part was no one could tell us why this was happening and no one knew if this surgery would help. We knew we had to do something, so after getting second and third opinions from other top surgeons at other hospitals, it was unanimous that this had to be our next step. That night before surgery we didn't get much rest. We had already sent her into open heart surgery 3 times before, but it never gets easier... in fact I dare to say it was harder.


That morning June 5th 2013 We were up early for our check in, we let Ella wear her most comfy PJs even though they didn't match. We checked in and did more of the typical testing, Ella cried. It was scarier that day, I think she knew it was different. We tried to smile and be calming to reassure her, but inside my heart was aching so deeply. I just wanted to run away, It wasn't fair that she was having to do this yet again and as always in the not so back of my mind was the biggest question of all... will she make it? Will I ever see her eyes again? Hear her voice? Did I tell her I love her enough? Will I see her smile again? It's not only death that I feared, it was also all of the complications that can come along with such a high risk surgery that can forever alter who she is. Stroke, brain bleed, damaged vocal chords, infection...etc. With all the thoughts rushing through my heart and mind I watched as the medicine began to kick in and she started to get sleepy and silly. I was thankful for the medicine to help her relax yet it felt like her personality was slipping away and I knew I wouldn't see it again until she recovered... if she recovered. We sign form after form giving our consent for treatment,  and they remind us of the possibility of death but we have to sign it anyway because she needs it. Then when I saw the anesthesiologist and his team I knew the time had come to send her back to the OR. I looked him in the eye and begged him to take good care of my baby. We then had to take the dreaded walk along her bed as she was wheeled to the doors and then we gave our last hugs and kisses before surgery and we put all of our heart in someone else's hands and she disappeared from our sight.


We found a seat and waited for what seemed like forever between those hourly phone updates from the OR nurse. With each good report I felt a sigh of relief yet I still held my breath. Then finally the call that it is finished and that it went well. We got a quick glimpse of her cold, somewhat puffy, face as she passed through on her way to the PCICU. She was sedated and on a ventilator but she was alive.


The surgery was over, but the hard part was far from over. She woke up scared wondering why she couldn't talk. The ventilator going through her vocal chords made it impossible to make any sound. She gaged over the tube down her throat and fought hard to sit up just merely an hour or two after having her sternum cracked open, her heart stopped, cut on and worked on, restarted, and then her sternum tied together with wires and her skin sewn back together. It took 3 or 4 of us to hold her down and try to calm her. She is a fighter. She is strong. Once the ventilator was removed, she looked at me and said "now I can go home" She so desperately wanted to leave. She was begging for water that she couldn't have and it broke my heart to have to tell her "not yet" over and over again. She refused to use a diaper so she stood up and went on a bedside potty chair. She was on Lasix which helps take the fluid off of your body and it makes it very hard to hold it, yet our 2 year old insisted that she would make it to a potty every single time despite the pain and vomiting when she would stand, and make it she did. She blew our expectations out of the water! Jon and I looked at each other across her bed and said "she is doing so good"!  We couldn't believe how well she was handling it all, how well she understood and how determined she was to get up and walk. It was hard, there were lots of tears and refusal of meds, and vomiting and painful dressing changes and those dreaded drain tubes, but through it all she persevered. She was a true hero.


By God's grace 8 days later we were discharged from the hospital and when we got to the Ronald McDonald House, she ran for the very first time. Gosh what a beautiful moment that was! Her heart had held her back in ways we didn't even know. She had never been able to run or jump, but now those things were in her reach. It took several months to "get back to normal", she had nightmares and would wake up scared and crying, there was still lots of vomiting a small appetite, but she did it. God did it. Now as I reflect over these last two years I feel emotional and extreme gratefulness for the mercy of God and for the blessing of these last two years with her. This Friday June 5th will be the 2 year anniversary of Ella's Fontan surgery and we will be in Dallas yet again seeing her cardiologist. Because this journey it isn't over. It's a daily fight. Her half of a heart is beating hard and working twice as hard as a whole heart. We know that our time with her is limited, we know that in an instant we could lose it all, but we also know that we can't live there. We must constantly choose to treasure the here, treasure the now. We pray for many many many years with our baby, but we know that just because she has done so well thus far doesn't mean that her future will be the same. I think it's easy to look at her from the outside and forget all that God has done in her life, forget all the moments we "should" have lost her, all the moments that we have come through, but as her mom, it's always on my mind. Not always to the deepest degree, but there isn't a day that goes by that I don't think about it multiple times a day. It is a part of nearly every decision, every outing, every meal, every get together... everything.       


I just can't believe it's been 2 years since we handed her over. The gratitude that fills my heart exceeds the ability of words to express. So I will continue to hold her close, to constantly shower her with hugs, kisses, and "I love you"s. I will keep feeling her heart beat and always take the time to listen to her breath and I will remember that every moment is a gift. I will never forget and I will do my best to never take her life for granted. I have seen far too many mommies have to say "see ya later", so for them and for me, I choose to cherish Ella's time here on the earth to the deepest of my capability. Each day is one more day together and each day is one day closer to our see ya later. I think it's okay to know that. I thinks it's okay to think about that. I think it drives me to treasure her deeper then I otherwise could. I don't sit around all day crying about it, but I do cry. I don't fill my days with worry and fret, but I do have fear. I refuse to let my sadness and fear steal the moments that I have with her. I speak truth to my heart as best as I can and while the truth is that she is terminally ill the truth is also that Jesus will never leave us or forsake us. When the pain and fear are so much that I feel like I can't do it I sometimes fall apart, but when I am able to refocus again on the here and the now, and My heavenly Fathers comforting arms of peace I can live in the moment again.


Friends there is so much pain and sorrow in this world, but praise the Lord we can have Joy and peace in the midst of the storm. We thank you for continuing to life up our family in prayer, it means so much to us as we face the daily struggles that come along with this journey. We will be heading to Dallas on Friday to meet with Ella's cardiologist to discuss her heart and a few other things. I will try to update when we get back!




Here are some pics of us getting the privilege of living life with our sunshine!




We had a family date night and took Ella to see her first movie in a theater. We saw "Cinderella". Then we took a carriage ride and had dinner!


Ella had her 2nd dance recital and of course LOVES every minute of being on stage!

Then we celebrated Mother's Day 2015!

She loves my new patio swing :)

And she loves her daddy almost as much as he loves her!

Then we took Ella to get a new summer do and she looks adorable!

Thursday, April 9, 2015

Prayer requests and Easter


We have some prayer requests. 

Will you pray for two of our heart friends, Owen and Emma? They are both dealing with decreased heart function and are in the CICU. Emma has HLHS/IAS like Ella and is recovering from open heart surgery, Owen is post transplant and went in this morning for a precautionary echo since he was having tummy trouble and the echo showed decreased heart function that was "emergent". Emma and Owen are both in need of prayers! 

Also Ella is still dealing with her GI issues and they are causing quite a bit of discomfort. She is also breaking out in hives on a regular basis and we haven't been able to figure out why just yet. This has been going on for about 2 months and some days it's worse then others. We think it may have something to do with her laxatives possibly, however we can't stop them just yet or she has more tummy problems. Ugh, not fun for our poor baby! She has also had some low oxygen that isn't too much of a concern to her cardiologist at this time, but could at some point be something we need to look into further. Right now it is mostly just discouraging since it causes Ella to not have as much energy as she could and also it doesn't give her as much of a cushion for illnesses that can cause her oxygen to drop. 

We covet your prayers as we lean on God's strength to keep moving forward through the unknowns of this life. 

Easter 2015- was spent at home with just the three of us celebrating the fact that Jesus is alive and because of His sacrifice and love someday our suffering will end and our hearts, minds, and bodies will be made whole in His presence! 

A few weeks prior we did get to celebrate Easter with our family! 


Thursday, March 19, 2015

Update on Our trip to Dallas

We took Ella to see her GI specialist in Dallas yesterday. It was a smooth trip and Ella did very well. She is still having some trouble eating, lots of stomach pain, her energy level has been a little bit low, and her bowels have still not been normal. She is on four medications/supplements and a special diet to help with this. We are excited we are going to be able to start weaning some of these medications and supplements as she tolerates it. One of Ella's biggest problems is that she doesn't go to the bathroom regularly, and has incredible bladder control. When we saw the doctor yesterday he told Ella she can't hold it like that anymore (we tell her that all the time, but I guess it's different coming from a doctor ��)! Ella was able to repeat to us what the doctor said and has been doing very very well ever since then! This morning she told me that her stomach felt all better! It's amazing what being regular will do for ones tummy! Please keep praying that we are able to help her move in the right direction and that we are able to wean some of the medicine and lean more on natural sources! We will be heading back to Dallas to follow up with GI and to see cardiology in about 3 months if everything goes well between now and then! As always we are so very thankful for your continued prayers!! 


Tuesday, March 10, 2015

Update

Just a quick update since it's been awhile! Ella is doing fairly well, but is having a few problems. We got a viral bug of some sort that has lasted what seems like forever, but Ella has handled it very well and we are so thankful.


 We are planning to head down to Dallas next week to hopefully figure a few things out. Please pray that the doctors have wisdom and that we are able to get some answers as to what is going on in Ella's body. She looks great most of the time, but Jon and I see it close up and we can tell it's just not quite right, so we just hope the doctors can see what we see and figure out a way to help her.


We would be honored if you would join us in praying for answers for Ella as well as safety from germs and safety in travels. This flu season has been so yucky and we are thankful that so far we have avoided most of the things going around. Also if you would remember our little heart friend "Emma" in your prayers as well as her mom and dad I know they would be grateful! She is having some more complications and it's so hard. You can follow her story on their blog www.emmajanae.blogspot.com.


Here are a few recent pics of our sunshine girl!

         Dressing up like Queen Elsa

           Playing with the neighbors!

        Family walk on Valentine's Day!


These two silly loves on Valentine's Day! 


              Sick baby girl resting. 

            Out for a walk exploring!

Friday, February 13, 2015

Ella's famous ;)

Second post of the day! I'm on a roll! A while back we were contacted by the Dallas hospital where Ella is seen and were asked to share Her story for their annual report! We were honored for the opertunity! The report just came out today and we wanted to share the article  with all of you! http://t.co/qaAbsDALDU! It's exciting to see a little bit of her amazing story published!

This is our family wearing red on the 6th! 


Ending CHD awareness week ❤️

Tomorrow is the end of CHD awareness week. We would encourage you to copy and paste the following link into your search bar to hear from other heart moms a little bit of what it is like to care for a child with a congenital heart defect! We thank you for your continued support to our family ❤️


Http://unexpectant.com/chd-awareness-week-being-a-heart-mom/ 




Monday, February 9, 2015

CHD awareness

This post was written last year at this time. It still rings so true today. 

Sunday, February 9, 2014

The other 364 days. Why it matters.

It's not just about wearing red one day a year. 


Today is day 3 of CHD awareness week. Today I want to write a little bit about the life behind the red. 


On national wear red day, we dress in red and take cute pictures to post to bring awareness. We show off our warriors and remember the angels. We throw out statistics and ask you to join our cause. All of these things matter. They are important. They are good. These are all things that we should be doing, but that is it for many of the outside world. Now what? For you, it's over until next year. For a family affected by CHDs it is day in, day out, 24/7. It never ends. It never goes away. It is always there. 


Today I ask that as you read this post that you think about the other 364 days of the year. The other 364 days that we as parents of a heart warrior face the ugly reality of this life. If you had a child that you knew would be taken from you, but you had no idea when, wouldn't that be scary? If you had to, on multiple occasions, hold your child down while they cry in fear, wouldn't that haunt you? If you have been told that your child would have their heart stopped and restarted multiple times, wouldn't you want to hide from reality? If you knew your child would have delays, restrictions, and extra hurdles, wouldn't that make you wish you could take away the pain? Do you lay in bed at night and wonder if your child is still breathing? If their heart is still beating? Do you watch every day for things that aren't quite right in your child's body language, energy level, or skin color? Do you have medical equipment in your home? Does every decision about what you do, where you go, who you see, what you eat, etc... ultimately lead you to make a choice based on what is least likely to somehow land your child in a hospital or worse, lead to death. Imagine the pressure that comes with that territory. 


Congenital Heart Defects are hard to understand. They happen at random, and range from mild to severe. Some require only life long maintenance by a cardiologist. While others require multiple open heart surgeries and or heart transplant. In some cases they can even require a heart and lung transplant due to damaged lungs from lack of proper heart function. There is NO cure. Transplant is not a cure. In fact when Ella was a week old and we went through the process of getting her listed for transplant, we heard all the positives and negatives of a transplant and let me tell you, while transplant is AMAZING and many can live semi normal lives and thrive with a new heart, it is safe to say you want that to be your very last resort. It is truly a scary thing to face. We were blessed that Ella improved enough to keep her native heart at least for the time being. Going through that process was scary especially knowing we may still have to go that route someday in her future.


When a parent receives the news of their child having a CHD, especially if it is one of the more complex ones, their world has forever been changed. Flipped upside down. That feeling that you get that day, that sinking feeling, that anxiety, that guilt that maybe you did something wrong, those emotions, those fears,... they never really go away after that. Sure, they become your "normal" you learn to deal with them and to hold them in and process them later. You do become somewhat desensitized to things that are your reality. You can say things like, my child is terminally ill, my child has had 4 open heart surgeries, my child is turning blue, etc... without bursting into tears. You've heard it, thought it, and said it so many times, that it's... normal?... Yet it feels so unnatural. It is unnatural for a parent to lose a child or to face it everyday, yet for many it is reality. There is a certain grief. The actual grieving process that you go through when you lose a loved one or when you have received news that you are losing a loved one. Maybe it's a long battle with Alzheimer's, maybe a rough bout with cancer, maybe a car accident and it's time to turn off the life support. However you face it, you grieve. I have lost many people in my life. I've been to more funerals then most. Some have been sudden, like our dear friend that we lost this last year, others have been dragged out painfully slow, like my sweet great granny who I helped care for day after day as she slipped away. Some lives seem gone too soon, yet others you know it was time and even have a small sense of rejoicing with their full life now fully lived. Yet you grieve. You grieve. In many ways, receiving news that you will be giving birth to a terminally ill child feels like a death. Though we have been blessed and Ella's life has already surpassed the expectation, we know that her heart is only good for a time, and so we grieve. This is Ella's life, but it is also a long drawn out process of her death. One might say that is the case of all life and they would be correct. No, no one is promised tomorrow, but I venture to say that if you were told your child would likely die from their sick heart vs. someone saying anyone could pass at anytime. You would understand the difference. It is different. So we grieve. The odd part about our grief is that we have long bouts of happiness and then boom the grief hits us like a soccer punch to the gut, taking away our breath. The stages of grief bounce around hitting us randomly over and over again. Grief is exhausting. While I'm not a grief expert, I speak from experience when I say grief does not only occur once the one you love has passed. The long years of leading up to it force you to face that reality and those fears time and time again. 


So family's facing CHDs ugly reality the other 364 days a year thank you for wearing red, why? Because you, someone who has the luxury of turning a blind eye to the pain of the heart world chose to embrace it, even if for one day. A choice to stand arm in arm with the weary heart families and bring hope for the future. It makes a difference. You make a difference. Not only does it show the heartbroken and the grieving that they are not alone or forgotten, but is shows the world that there is something out there that is stealing the lives of our children! While I don't like the comparison of CHD's to childhood cancer in the whole debate of which is worse, because lets face it, they both are horrible and both take far too many lives, I would like for CHD to be known by the world the way cancer is. If someone hears that a child is diagnosed with cancer, they instantly know what that means; however, if someone is diagnosed with a CHD people say "what?" Did you know that in the United States, twice as many children die from congenital heart defects each year than from ALL forms of childhood cancer combined? Does this take away from the horrible fact that cancer exists and that it takes these precious lives? Absolutely NOT! But doesn't it make you wonder why you haven't heard of Congenital Heart Defects before perhaps following Ella's story. It makes me wonder why I didn't know what that meant before Ella was diagnosed. If it is killing twice as many more children then all childhood cancers why didn't I know about it? If a doctor had looked at me and told me my child had cancer vs. being told she had a CHD I would have known what he was saying. Why? Because of lack of awareness. Again, I'm not in ANY way taking away from the pain of cancer, in fact, if cancer had been our diagnoses it would have been devastating. I'm only raising the question of why isn't CHD known? What can we do to change this? Why does it even matter? Well, it isn't known because of lack of funding and awareness, we can help change this by speaking about it, by wearing RED on national wear red day, by funding pediatric heart programs, It matters because kids are dying, mine included and truth be told it could be yours. Ultimately awareness leads to funding and then research and new surgeries and medications and treatments come into existence. That gives us hope. I have enjoyed watching the St. Jude specials since I was little, I would cry along with them. Did you know that public donations provide more than 75% of their funding? That is amazing! Such an wonderful gift for families facing that illness. I would love for there to be a place like St. Jude for Children with Congenital heart defects. We need someone to fight for them, to constantly research. A hospital with the sole focus being find a cure for CHD's. It doesn't exist. We need funding, we need support, we need awareness. That's why it matters if you wear red on national wear red day, that's why it matters if the people in your life are familiar with the term CHD. That's why congenital heart defect awareness week matters. 


Awareness and research are what turn this...

...Into this.



It matters, because If Ella had been born 5 or 6 years before she was, there would have been no chance for her at all. It matters because advancements are being made and lives are being saved. Let's keep bringing awareness to a disease that shouldn't steal away our beautiful children! 





Thursday, February 5, 2015

Wear red February 6th!

February is CHD (congintal heart defect) awareness month. We will be wearing red for national wear red day this Friday the 6th (tomorrow)! We would be honord if you would wear red to support Ella and all the other heart warriors still fighting and the heart Angels that have gone too soon. Make sure to tell someone (or many people) about a heart warrior and CHDs tomorrow!

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. Www.emmajanae.blogspot.com 

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 www.emmajanae.blogspot.com 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

update

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

Update

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!