Tuesday, February 7, 2017

CHD awareness week

I wrote this a few years ago, but I updated it a bit for this year. Congenital Heart Defect Awareness week is Feb. 7th-14th. National wear red day was this last Friday. 

The other 364 days.

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

Today is day 1 of CHD awareness week. Today I want to share 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 most 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 a heart family 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, 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. We need people 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! 

Wednesday, September 14, 2016

Post surgery update

Ella's cath surgery went well. It was very hard on her emotionally the night before and the morning of, but she did amazing! The surgery did not reveal any problems and things look beautiful inside! While that is great news it also means we don't have a clear answer as to why Ella is having the symptoms that she is having. At this time we will continue as we have been, just knowing that Ella has more limits activity wise then we were expecting, but, that we may be able to improve that some if we work hard on helping her build endurance. Once she came out of surgery she didn't feel very good and had to keep her leg straight for four hours and her throat hurt pretty bad from the ventilator, they had to pull her IV, and once it was time for her to start sitting up she threw up. After that they wanted to keep us for a little while longer just to make sure she was okay before letting us go back to the Ronald McDonald House. She had to have a special pressure bandage that we had to leave on for 24 hours and we just took that off once we got home and the sight looks really good. She seems to be feeling pretty good, she hasn't complained about too much pain at all, just minor and hasn't needed any additional pain meds. I've even had to remind her not to run or jump a few times! As always the staff at Dallas Childrens were incredible, the nurses that cared for her pre and post op were so nice! It made the whole day much easier for all of us! 

Daddy made her an indoor tent at the RMH!
Pre cath snuggles, smiles, and "see Ya laters" (never gets easier... not pictured all the tears)!

Post cath recovery and discharge!

Recovery snuggles at the RMH with the best daddy ever! 
Please continue to pray for her healing process and for no sickness or infection! Also please pray for her mind as she processes what she went through, so far she is verbilizing well but is experiencing some after anxiety. Nothing too severe, just some things here and there trigger it for her and so prayer for us to be able to have wisdom to help her through those emotions are so appriciated! 

We made it safely home and I'm hoping   we all get some MUCH NEEDED rest tonight and that Ella has no nightmares.

Last but certainly not least, I want to wish my sweet, amazing, strong, kind, angel, of a husband a happy 9th wedding anniversary! Living life along side of you has taught me so many things. Having you for a husband, team mate, and best friend, and watching you be a father are truly some of my greatest blessings. I love you forever and always, thanks for choosing me! 

Thursday, September 8, 2016

Long time no update!

No we haven't fallen off the face of the earth, we've just had our plate full and blogging fell by the wayside. 
Over the last year so so so much has happened and Ella is growing up crazy fast! Just a quick recap of some of the events (in no particular order)!

-Ella had another dance recital
-She lost her first two teeth
-She started first grade
-She started drama class
-She is 47 inches tall and weighs 47 pounds
-She loves making her own books and dressing up as different characters
-She is learning to swim in our new pool
-She is learning to ride her bike that she got for Christmas
-She adores her next door "neighbor friends"
-She turned 6... yes 6!
-She got glasses 
-She had her first dentist appointment
-She hosted a fun pool party and ran her own lemonade stand

She has come so far and this year has been full!

Heart health update.

Overall Ella is doing well, we see her cardiologist at least every 6 months and never get over the miracle of a good report! She has had a few things that have been a small concern for quite some time now. She still seems to lack endurance and energy that even with half of a heart they expect her to have and she is still having blue spells from time to time with activity. We've discussed these issues with her cardiologist multiple times and since her echocardiograms and EKGs have looked good and the symptoms haven't seemed too severe we have just kept an eye on her. We recently discovered that she is dealing with a high heart rate (tachycardia) with minimal activity and that seems to be causing her lack of endurance. For example we hooked her up to her pulse ox machine and let her play the wii. She ran/jogged in place for about 1 minute and her heart rate topped out at 191 and her oxygen was 84. You can imagine why she doesn't feel up to more activity and when she pushes herself to keep up with other kids she ends up losing her color and throwing up. We just finished doing a 24 hour holter monitor on her at home just to see how she does through a typical day (of course when I monitored her along side the holter her heart rate wasn't as high, but I guess that's how it usually goes!) We haven't heard those results yet. Based on her symptoms and the fact that we have been dealing with this for over a year and it isn't getting any better we, with her cardiologist, have made the very hard decision to send her into her 9th surgery. What it comes down to is, as good as the tests look on the outside, there are just some things that can't be seen unless they get inside. We are scared and struggling with sending her into surgery again. It's been 3 years since her last surgery and now that she is older we are sad that she will likely remember this surgery so well. The good news is that this will be a cath surgery NOT open heart! Much less risk and recovery time is minimal. That being said it is still surgery and she will still have to be put on a ventilator when she goes under and there are always risks involved. I'm not going to pretend this is easy or that I'm emotionally ready to send her back again, but Jon and I both feel a peace that this is the next step. There are a lot of unknowns and scary possibilities with the results or the outcome of this surgery but we are putting our trust in the one who already knows what that is going to be. Ella's surgery is next week. We will go into pre op on Sept. 12th and surgery is scheduled for 7:30am Sept. 13th. We have waited to share the news of her upcoming surgery until we had told her because we knew she needed to hear it from us and not a well meaning friend asking how we were doing with the upcoming surgery. She handled the news well and is scared but oh so very brave. She is mostly looking forward to watching movies in the hospital while she recovers and is dreading the lab work and IV the most, she said "the rest I'm okay with".

Will you join us in praying for our sweet sunshine as we send her back once again? Please pray for the staff, the surgeon, the results, safety from germs while we are there, prayers for strength, prayers for Ella's anxiety... etc. We just ask that you cover us in prayer. We know that this will not be easy, but we are trusting that God is in control.    

Sunday, August 23, 2015

5 years post Norwood

It was 5 years ago today that we sent our two week old baby girl into her second open heart surgery. The same surgery that they were unable to do the week before that ended up with an emergent decision by her surgeon that had saved her life. The week between her first week surgery and this one we went through the process of getting her listed for transplant. It was a long scary process and we were told she would be listed 1A. Meaning first on the list to receive a heart if one came available. She was that sick, that fragile. It was so hard. But we, along with our army of prayer warriors railed together to storm the gates of heaven with our pleas for God to save her life and heal her sick lungs to support her half of a heart. Because in the words of her doctors, her lungs are too damaged to support a broken heart. But in that week, our mighty God used the first surgery to send the perfect amount of blood too her lungs and they slowly day by day they began to grow stronger. So at two weeks old her surgeon decided that her lungs were ready to try the first surgery again. She went in and the many hours went by, and when she came out she was swollen from being on the bypass machine, she was still on the ventilator, and her chest was still open covered only by a translucent amber colored type of plastic.  We could see her heart beating inside and it made me physically ill. But she was alive! About 12 hours into recovery things went downhill fast. We were losing her, or so we thought. The room was full of doctors and nurses all rushing around, the life support machine was brought in and the surgeon had been called to come back to the hospital to hook it up... But we didn't have time to wait. The doctors gave her a dose of medication that they call "poison" it's an awful medication, but sometimes it can save a life. It was our only option. They gave her dose after dose and it wasn't working. They had maxed out on the allotted amount and the doctor called someone on the phone and I heard them arguing over what to do, he wanted to give her one more dose, but the lady on the other side of the phone basically told him it was a death sentence. He explained that we were losing her and the surgeon 
hadn't arrived yet. They both knew the risk, but went ahead and decided to go through with one more dose. The doctor explained to us the place we were in and we all agreed to give it one more try. Then her doctor came over and prayed with us. That's when it happened. Instead of her death her heart started to stabilize! God had heard our pleas and He had mercy. Today we celebrate His goodness!!! 

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!