This is one of our favorite times of the whole year! Gracie celebrated her third birthday a few weeks ago, Carson turned five last week and Adam will be having his first birthday next month!
We headed back to the cardiologist today. Adam’s heart function has been a concern ever since the surgery, at our last appointment that was addressed at length. Naturally, today was a big day as he heart function would again be assessed (via his echo test). Today his echo was unchanged from the last appointment. This was so/so news for us. He is still classified as “decreased” heart function, I was hoping to see improvement. It’s been 8 months since his surgery and his function has remained unchanged since surgery. The fact that it is unchanged at this point means it will probably not improve. All of this is very, very important. Our heart is a muscle and of course is constantly working, Adam’s is working much harder than yours or mine and it will tire over time. As it tires his function will decrease until it gets to the point when it is in heart failure. Once that occurs we go on the list for a heart transplant.
We just want his heart to be as strong as possible to delay that process for as long as possible.
At every appointment I am constantly reminded how severely we need more research. As it relates to heart function and Adam I have no shortage of questions for the doctors (of course) and my questions are mostly met with “well, it is hard to say…” or “we just dont know….” Dont get me wrong, our doctors are excellent and are very well qualified and capable to do what they do but in this field there is still so much more to be figured out. Another reason for the answers is that each body is different but again, with each appointment I am painfully reminded that we are navigating a journey in which much more needs to be known to ensure optimal quality of life and increased life expectancy.
Adam is such a trooper and always has the biggest smile on his face. He’s crawling all over the place now, pulling up, taking steps while holding on to things and doing all the things any other 11 month old would be doing
Thank you so much for your continued prayers and support!
I’m so excited to tell you about our upcoming event- Hearts and Wines 2015!
Adam’s greatest need is research and it is severely underfunded. He was born with half a heart but we fully believe he was built for a whole life.
Please mark your calendars for a great night and the opportunity to help raise funds for congenital heart defect research.
Tickets are limited.
It’s been busy here, naturally there’s never a dull moment with these crazy kiddos. Carson and Gracie’s preschool was closed for two weeks, so that time was filled with lots of memory making. Craig and I were both thankful to get to spend some special time with the older two. For the past 10 months they really have been through so much. They’re so resilient and amazing, I couldn’t be more proud of how they’ve handled our “new normal.”
I’ve included some pictures of our special time with them as well as pictures from their first day of school. Carson is now in VPK and Gracie is in Pre K3
We also have some upcoming birthdays!! Next Friday, August 28 Gracie turns 3! Just a few weeks later Carson turns 5 on September 17 and a month later Adam will be ONE on October 19!
Carson won a drawing at the library and received a gift certificate to Barnes and Noble along with other books
Carson was very excited to have Johnny, a bearded dragon, in his class this year
Heart Heroes is an organization that exists to send personalized capes to all heart heroes. Adam received his and proudly wore it!
Local 6 out of Orlando did a great story on congenital heart defects last night. Sarah did an interview and shared some of Adam’s story and how important it is to raise awareness and money for CHD research. The interview and story is linked here.
We are also working with the Children’s Heart Foundation to reestablish the Florida Chapter and are having a wine tasting and silent auction event on November 13th in The Villages, FL. If you’d like to attend or donate to this special cause, please go to the Hearts and Wines 2015 page.
guaranteed to make you smile!
Click the link below to watch Adam’s video…
The other day I had the opportunity to share Adam’s birth story in writing. As I typed I realized it was the first time I had written the story out. I thought it might be good to share on here:
I will never forget hearing my husband ask the doctor “Why is he purple? Why isn’t he breathing?” immediately after Adam was born.
He was our third child, the other two were born healthy babies and we had no reason to believe anything would be different with Adam. However, he was quickly taken out of the room for testing. Within 6 hours of being born Adam and I had both been discharged and were heading to UF/Shands so that more testing could be done. Before they transported Adam they brought him into the room while he was in his mobile ICU. This little boy who I had not yet been able to hug and kiss looked very peaceful and content but the tubes, wires, bandages made for such an unexpected scene. Inside I kept thinking “Everything is going to be fine, the staff is just being extremely thorough but everything will be fine. He probably has a small hole in his heart, I’m sure we’ll be sent home with medicine and the hole will close on it’s own.”
Five hours after arriving at Shands, two doctors sat us down. “Your son has a severe heart defect.”
Oh, those words.
Those words were so heavy.
They told us Adam had tricuspid atresia. His tricuspid valve never formed and sub sequentially his right ventricle had never formed.
“Is he going to die?”
“Will we ever take him home from the hospital?”
“Will he ever meet his older brother and sister?”
Of course these questions immediately overwhelmed me, although I was too scared to consider asking. After the long discussion Adam and his anatomy all I could ask without being scared of the answer was “What advice can you give us?” As one doctor stared blankly I will never forget how the other popped in “You’re going to have three kids, you will love them all the same, one will just have a different heart.” And with that response I was immediately filled with hope. Hope that Adam wasn’t going to die, hope that we would take him home from the hospital and hope that he would meet his brother and sisters.
Adam was blessed with great anatomy as far as TA babies are concerned, he was able to skip what is typically the first of three procedures. On October 22, 2014, four days old, Adam was discharged with no oxygen, no medicine, nothing. We had weekly cardiology appointments and the plan was for him to have his first open heart surgery around 4 months. During this waiting period Adam thrived, he was doing a good job putting on weight and staying healthy.
At 14 weeks old he had his first open heart surgery, the Glenn. There were ups and downs but after just 6 days he was discharged. The surgery was tough, the days and nights post surgery were even harder. However, all of that was finally behind us and we were excited to live life with surgery behind us and Adam in a stable condition.
He will have another open heart surgery, the Fontan, when he is about 2 years old.
This little guy is quite a fighter, a warrior for sure. We feel so honored to be Adam‘s parents, this little guy is truly amazing.
Adam’s story is being shared on the PCHA
Yesterday marked 5 months post surgery, doesn’t this scar look great?
Yesterday was another check up at Shands. As you may already know I have been concerned leading up this appointment. To hear the detailed description regarding my concerns continue reading, otherwise skip ahead and enjoy the pictures below.
At our last appointment in April one of our cardiologists (we’ve seen so many over the months), Dr Saidi, was attending that day. She was great and very informative. During the appt she happened to mention “Adam’s echo is unchanged, he still has decreased left ventricle (LV) function.” She seemed not to be concerned with this, however, I felt a little alarmed. Here’s the thing, Adam only has one ventricle, his left. The left ventricle is really the powerhouse of the heart. Thus, having a “decreased LV function” is not what I want to hear. But, here’s the real kicker….the MAIN objective of the open heart surgery he had in January is to decrease the load on the heart meaning that LV function should improve and be great. The only objective of the medicine he is on is to also decrease the load on the heart to help improve function. Given these two factors one would not think he would have decreased LV function.
But here’s why I really became concerned- to my knowledge he did NOT have decreased LV function prior to the surgery. So, if you’re following along you should be realizing “this doesnt sound good.” Yes, I felt the same way and I felt very concerned.
I hope all of that makes sense.
During the visit with Dr Saidi we talked briefly about decreased LV function, she mentioned that could just be how his body is responding. It wasnt until later that I started to put together all the details mentioned above. As I put them together I grew more and more concerned. If the LV isnt functioning well we’ve got a real problem here.
Prior to yesterday’s appointment I had emailed the cardiologist all of my concerns. Before Adam had the echo yesterday (which measures LV function) we were able to talk to Dr Cooley a bit about the concerns and his current LV function (decreased) compare to his pre surgery LV function (normal). She said she’d take a look at his echo today compared with pre surgery, hospital stay post surgery and ever since.
After the tests Dr Cooley and Dr Shih came in to chat with us. They confirmed that yes, his LV function is not as good as it was pre surgery. However, they noted he was on the by pass machine during surgery ….side note-this is a heart/lung machine that literally kept him alive while he was in surgery…the doctors stopped his heart to be able to perform part of the surgery while this machine did the work for his heart….have I mentioned how amazing this kid is? how much of a WARRIOR he is?
Anyhow, the doctors noted that being on the bypass machine can affect heart function. After they said that I did remember that statement had been mentioned in the hospital. So, okay, that can explain some of the decreased LV function. They did note that his echo yesterday showed “mild to moderate” decreased LV function, which is a slight improvement they pointed out. True.
I feel we’re in an “okay” spot overall. They agreed, the LV function could be better, however, it is in an acceptable place for them. Of course I’d loved to see “normal” LV function, maybe at some point we’ll get there, I dont know. Please continue to pray for Adam, he needs your prayers and they DO make a difference.
So, those are the details of his body internally. On the outside, the kid looks GREAT. He is doing a good job gaining weight, he is always smiling and happy. He has started to find his voice, he’s said “mama” a few times and even said “dada” …it’s so cute to listen to him.
As you could see in the other pictures he is sitting up on his own now. He’s also pushing himself up to his hands AND knees! I think soon we’ll have a crawler!
Earlier this week Adam got his first two teeth, they look so cute.
Tomorrow Craig and I (and Adam) are heading to Orlando for a CHD symposium hosted by Mended Little Hearts. We’re excited to learn even more about the CHD world.
Carson and Gracie are doing great, they are the best of friends and always keep us laughing.
So, this is where we stand. Thank you so much for your continued prayers and support, they are needed and appreciated.
The kids had zoo animals that came to the school, they were explaining how big the turtle was….
Adam knows how to run the echo test!