Saturday, March 29, 2014

Life's happenings

We are doing well here and Ella is really doing great! Her sats are a little lower then we might like some and she is still having some blue episodes and shortness of breath, but those will never fully go away. She is still loving her dance class and while she currently has a little bit of a runny nose, her body is handling it well! Our next cardiology appt will be April 18th and we are all looking forward to that. Not that it's fun, it's just nice to get the reassurance that everything is functioning correctly. We are seeing Ella grow up so quickly and we are cherishing our time as always! She is so tall, sometimes I think she just grew over night and at other times I look at her and still see my little baby. Jon and I just can't get enough of her, our time together is so sweet! Thank you all who faithfully continue to pray for our sunshine, we know God holds the number of her days, we pray they are many! I found this song the other day and it made me cry, it speaks my heart, its called "show her what it means to be loved" by Mark Schultz http://m.youtube.com/watch?v=DJOSMB0QhFY   


















Friday, February 14, 2014

CHD week comes to a close but the battle continues.

As CHD week comes to a close I want to say, that although CHD's are absolutely horrible, there is always something to be thankful for. Since entering the heart world I have learned so many things. The reality of losing a child makes you cherish your time together so much. In our case we have been showered by love and support by so many, blessed in ways many never experience! I can only hope that as Ella grows, she finds beauty in her pain. Thank you all for the support as we have spread the word of CHD's. Remember the week is ending, but the warriors and families are still fighting. Happy Valentines Day!


(Last year -Valentines Day 2013)

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!





Friday, February 7, 2014

Finishing out Wear RED day!

Over 50 people wore red and posted about it on my Facebook today (plus over 20 here on the blog) and many more who wore red but didn't post a pic. all to bring awareness to Congenital Heart Defects! I was also privileged to see all the many many MANY people wearing red posted on other heart friend's pages!! It was hard to keep up with all the posts and pics today, but what a gift to be supported by SO many! Just amazing! Thank you all for choosing to make a difference today for all those who live with CHDs or who have been called home! Awareness makes a difference! Today YOU made a difference!!



CHD awarness week day 1!

We are blown away by all the support the CHD community is receiving today! We have had an explosion of red on Facebook for our Ella girl and all the other heart warriors and angels!!!



 

Thursday, February 6, 2014

Tomorrow is the day!

Don't forget to wear red tomorrow (Feb. 7th) to kick off CHD awareness week for Ella and the other heart warriors and heart angels who fight so hard!

Wednesday, February 5, 2014

A chance to show support for Ella!!

Ella is still sick, but handling it well. Her oxygen is still a little lower with activity, but great while at rest. She isn't running fever anymore which is helpful with her heart rate staying in a safe relaxing range. She is still coughing and still has a runny nose, we are hoping it dries up soon! We are ready for good health again! Please keep praying!


Now on to a way for YOU to make a DIFFERENCE! February is Congenital Heart defect (CHD) awareness month! The 7th through the 14th is CHD awareness week. We are asking all of Ella's supporters to WEAR RED on FEB. 7TH. Share her story or share her blog, just spread awareness of CHDs! We want others to know more about this silent killer that is so unknown to the world but takes so many lives. We would love to know if you are wearing red on the 7th! Leave a comment and let us know that you will be wearing red for our heart warrior and all of the other heart warriors and heart angels!


Fact Sheets



Incidence, Morbidity & Mortality

  • Congenital heart defects are America’s and every country’s #1 birth defect. Nearly one of every 100 babies is born with a CHD.
  • Congenital heart defects are the #1 cause of birth defect related deaths.
  • Congenital heart defects are the leading cause of all infant deaths in the United States.
  • Each year approximately 40,000 babies are born in the United States with a congenital heart defect. Thousands of them will not reach their first birthday and thousands more die before they reach adulthood.
  • Each year over 1,000,000 babies are born worldwide with a congenital heart defect. 100,000 of them will not live to see their first birthday and thousands more die before they reach adulthood.

Lifelong Disease

  • Almost half all children and adults with complex congenital heart disease have neurological and developmental disabilities.
  • There are an estimated 2,000,000 CHD survivors in the United States.
  • For the first time, more than 50% of the CHD survivors are adults.
  • 10% of all CHD cases evaluated in an Adult CHD clinic are first diagnosed in adulthood.

Economic Factors

  • 91,000 life years are lost each year in this country due to congenital heart defects.
  • The cost for inpatient surgery to repair congenital heart defects exceeds $2.2 billion a year.

General CHD FACTS

  • More than 50% of all children born with congenital heart defect will require at least one invasive surgery in their lifetime.
  • There are more than 40 different types of congenital heart defects. Little is known about the cause of most of them. There is no known prevention or cure for any of them.
  • In the United States, twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined.

Research Allocations & Impact

  • Congenital heart defects are common and deadly, yet CHD research is grossly under-funded relative to the prevalence of the disease.
  • Of every dollar the government spends on medical funding only a fraction of a penny is directed toward congenital heart defect research.
  • The NHLBI has stated that Congenital Heart Defects are a serious and underappreciated global health problem.
  • In the last decade death rates for congenital heart defects have declined by almost 30% due to advances made through research.


Source of facts: http://www.childrensheartfoundation.org/about-chf/fact-sheets




With awareness comes funding, with funding comes research, with research comes hope!



Friday, January 31, 2014

update on our little sick girl.

Update on Ella: She is hanging in there, but her oxygen did get pretty low today (low to mid 70's). Since she is not supposed to be below 85, it was obviously startling to see that number post Fontan. We are just watching her to see what she needs, but right now she is doing okay and is able to bring up her numbers with a little rest. If you remember we just had our oxygen supply picked up from the house earlier this month. That being the case, if she does get to the point of needing oxygen we will have to take her to the hospital. We are certainly not there yet, but she needs to keep her numbers higher then they were this afternoon. She is playing a smiling a lot so she clearly is not letting this sickness get her down. Fever is off and on but thankful her heart rate has been down when she isn't running fever. We appreciate your continued prayers for her to get well soon. As "mild" as this is, it has really affected her numbers. This just shows us again how fragile she is despite how healthy she looks on the outside. Thank you all for praying and checking in on her, it means so much!

Thursday, January 30, 2014

Sickness strikes.

It's official, Ella is sick. We took her to the doctor yesterday morning after she complained about her mouth hurting several times the night before. They did a strep test, but it was negative. Our doctor said her throat looked a little red though. Then this morning she has a sore throat, coughing, stopped up, runny nose, fever... :( This is only the second time in her 3 1/2 years that she has been this way, the first time post Fontan. Please pray. So far her oxygen is staying stable, although it was boarder line low this morning, it also hit a near record high! Her heart rate however is high. 150's-160's (normal for her being 108-130). This is the first sickness without oxygen support in our home, I'm nervous. I am encouraged that her oxygen is hanging in there, even if it was pretty low this morning, I'm not crazy about her heart rate though. I'm sure the fever, stuffy nose, and discomfort all are playing a role in the elevated heart rate, but I still don't like it. Her fever is not high at all and I expect it to climb, if it does, her heart rate very well may climb higher as well. High heart rate for long periods of time wear on the heart. With half of a heart that is already going to wear out long before it should, the last thing we want to deal with is something wearing it down even faster.


I am 99% sure I know where she picked this sickness up. At dance class, week 3. I noticed one of the other little girls in class coughing and sniffing quite a bit. I mentioned it to the teacher, and Ella was only near her a few times. Of course we did our usual antibacterial gel, Lysol, and even a bath as soon as we got home, but it wasn't enough. Now we can only hope that Ella handles it well, and that this builds her immune system so she will be stronger later without doing too much damage. We did our best only short of walking out of class altogether. I decided to let her stay. I prayed for her protection. She still got sick. One simple truth remains, God is still in control. He allowed her to get this sickness, I know He could have stopped it. I also know that Ella does have to get sick to build her immune system and that Ella is stronger now then she ever has been so it's time to let her do things like dance class and just do our best and let what happens happen. Is it easy? Absolutely NOT! I've cried, dealt with guilt, knowing I could have made her skip class and she would be well right now. I've dealt with anger towered the parents who chose to send there child to class sick, I've dealt with anxiety for what this means for Ella's future. I've felt fear of continuing on in our journey of letting her participate in group events. It makes me want to curl up in our safe little bubble and never see or touch another human ever again, maybe that sounds a little crazy, but that's just something you wouldn't understand unless you had been through what we have. The truth is I am human and I feel all of these things, but It's also the truth when I say I trust that God is in control. I choose to speak truth to my scared self. I choose to believe truth.


Ella is in good spirits. Smiling as usual. She is self-limiting in play and there are a bit more snuggles. She is breathing a bit heavier plus a little bluer when she plays, but overall she is handling it like a champ. God was good to give her some rest last night with minimal coughing. This whole thing may very well be just as hard on her mommy's heart as it is on hers. My goodness I love that girl. The unknown is so yucky sometimes. Please be praying! I know this is minor in comparison to open heart surgery, but it is scary. We just don't know how long this will stay in her body, and we don't know what all it will entail before it's over. Please pray that we have wisdom, that her body holds up, that her oxygen stays acceptable, that her heart rate comes down, and that this ends quickly. Thank you all so much for the support and prayers. This is a new season, a season of sickness, a season of stretching our comfort, and a season of continuing to choose trust.


Please also be praying for my niece Brooklynn, she is 7 months old. This is the little heart buddy that Ella has in our family. She is also battling a worse illness and has a very high heart rate (180's-190's) and has a doctor apt this afternoon.


You are all such a blessing to us, thank you for praying!



Tuesday, January 14, 2014

BIG update!!

This last week was huge. The healthcare company came and picked up Ella's concentrator and all of her oxygen tanks! I had so much fear and joy as I watched them load the tanks and drive away. This is the first time in Ella's life that we haven't had oxygen available to us in our home. Although it's been rare, on occasion we have had to use it to get us through episodes of low oxygen. Ella has been stable with her oxygen for the most part and so it was time. Seeing them go I felt like we were losing some of our independence, since if she needs oxygen now we will have to bring her to a germ infested ER instead of being here in our home. At the same time, seeing them leave was like gaining independence. Like they were a weight I had been carrying, and seeing them leave felt so good!! We praise God for this new milestone!



Yesterday was the third anniversary since Ella's Glenn surgery (which was her third open heart surgery that she had at 5 months old) so we celebrated. We celebrated as we took Ella to her first dance class!!!! It was a beautiful day! She is taking ballet and tap!



This was Ella's first ever group activity, this was the first time she has fully engaged with other kids her age, this was the first time for her to hold hands with friends in a circle, this was the first time for so many things! I talked with the teacher before hand about Ella's heart and about our risk of her getting sick and how this was a big step for us and our anxiety was high. She was very understanding and reassured me that they sanitize the bars and have the kids use antibacterial gel before each class and watch for symptoms. She also told me they would be extra mindful with Ella's class.Yesterday was a moment I don't think I'll ever forget. I felt every emotion under the sun while a rush of memories of all that we have faced and hopes for the future flooded my heart and mind. God held me yesterday. He gave me strength as I let my little girl go further from my care in the real world then ever before. I let go of some of the control that I want to hold forever but know that I can't. I cried. I am crying now, just reliving that moment yesterday. It was so much more then just a first dance class, this was a testimony of God's strength in us. This was a pot of gold at the end of a rainbow after a long 4 year storm. This was normal. This was an outing that I stood in the corner of the room, only observing, as my miracle introduced herself boldly to new friends and caught on to the things the teacher was teaching. I just stood there with tears streaming down my cheeks and a smile a mile wide. I felt like we made it. We are post Fontan and now, we get to live this life in a whole new way with her however many days the Lord sees fit to give us, we pray for many more years. Her life is unknown and she is "terminally ill" but I'm not sure I have ever seen anyone more full of life then our sunshine! God has been so very merciful!!!!!




















videos of Ella dancing:





You all have walked this journey with us through prayer and we thank you! We thank you for going to the Lord on our behalf as we know He chose to work many miracles in Ella's life and as a result we got to have this amazing experience. Now we pray and ask you to join us as we are venturing out more for God's continued protection over Ella's health and ours as we care for her! For wisdom in finding that balance of letting her participate in the outside world of yucky germs. Pray for her heart, lungs, liver, and immune system to stay strong! Pray for my anxiety as I learn to switch my mindset and for Jon as he strives to lead us in the way that God wants us to go. Your prayers and support fill our hearts with thanksgiving, we are so grateful for you! Seeing these pictures again today, I am reminded of the day I set in the doctor's office at about 25 weeks pregnant, where we found out the extent of the complexity of our unborn daughter's heart, and that she only had a 20% chance to live. That is the day I was offered an abortion. Today I mourn for all the mommies who have received bad news about their unborn child and choose to abort not knowing what could have been. Today I mourn for those who chose to fight for their child but had the outcome that we feared we would face. Life is a gift however long or short it is. Feeling thankful that I was raised with the understanding of the sanctity of life. My child is not a statistic, she is a child of the King perfectly created to bring Him glory! Praise the Lord!



Monday, December 23, 2013

Pictures!!




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




























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

 The little white spot in the black circle is my baby 4 years ago today, the day we saw her heart beat for the first time! I think she was the cutest spot ever :)
 
 
Now to get you caught up on allll the pics!
 
First up is Ella's first trip to the salon to get a haircut! This was in July (I think!)
She was so brave and not at all afraid! I was impressed!
 






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

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


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



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


She couldn't wait to see the elephants!

I love watching these two together!

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


 
We had such a great time!


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


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




Daddy playing with Ella 

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


Then after Thanksgiving we started decorating for Christmas!


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





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


                                               Our snow angel!







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












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




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









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


(it's decaf and we shared) :)



Once we got home we ran off the sugar rush!
 
 
 
Ella singing "Jingle Bells"
 
Ella singing "We wish you a Merry Christmas"
 
Merry Christmas friends! We truly hope you take time to celebrate the birth of Jesus this Christmas!His birth, life, death, and resurrection is our hope!