Hey everyone (get ready, it's a long post, but please read all the way through the end - even if you skim - we need your help with something),
We hope that you have been enjoying as beautiful weather wherever you are as we have here in Greenville! Ian actually wore shorts to his cardiology appointment this afternoon and he looked PRECIOUS! And, yes, that's why I am writing ... BBBBIIIIGGG NEWS tonight! We went to the cardiologist today for our 6-week post-op check-up. They weighed him (18 lbs. 6 oz so we are definitely getting bigger), took his O2 sats (95-96), and did an echo on him (which he was very well behaved) ... AND THEY RELEASED HIM FROM A CARDIOLOGY APPOINTMENT FOR 6 MONTHS! I really can't believe it! In fact, Dr. Raunikar, said that his biggest concern is whether Ian and Bonner will steal each other's toys -- to which Stewart and I both replied ... "Already happening!" He also mentioned, "Do you realize, Jennifer and Stewart, that when I see him in 6 months, that Ian will be WALKING into the appointment!" My heart sunk! I cannot believe the journey and it brings tears to my eyes when I think about where we have been and how far we have come!
I am truly blessed to be Ian's mom - I have stood by him since the beginning and been his biggest advocate! There have been so many scary days and so many emotional rollercoasters that I am so ready to get off of the ride! We know the road ahead is unknown, but we can always look back and see the Lord walking beside us through it all!
There is one thing that we haven't really shared with many people and it's not to alarm anyone, but it's the long-term prognosis ... during Ian's last surgery, the surgeon Dr. Bradley informed us that his pulmonary valve was not fully developed, however, he opted to leave Ian without a pulmonary valve instead of putting in a mechanical valve. The reason for his decision was based on several factors:
1) on the pulmonary side of the heart, blood is pumped to the lungs and there is very little push-back from the lungs -- they basically take whatever blood they receive;
2) the only option for Ian would be a mechanical valve which is not advanced enough to grow with him as he gets bigger so it would destine Ian for another surgery in the years to come; and,
3) people leave for decades without pulmonary valves, depending on how their hearts rebound over the years, their activity level, etc.
I must admit that we were a little shocked with the decision, but when you are in that situation and you trust the surgeon implicitly, you simply nod and say, "Thanks for saving his life!" With that being said, long-term there is a chance that Ian will need an additional surgery to have a valve inserted -- just keep in mind that we are talking 10s of 10s of years ... probably when he is in his 20s or 30s. SO we are NOT concerned with this. We know that we will be monitored on a yearly basis and they are very much aware of his condition and know what to look for. I just mention this because I thought everyone should know and it answers the question, "When's the next surgery?" We are not planning for any surgery at this point and we will focus on our HEALTHY little boy and raising him to be a loving young man that knows Jesus Christ as his Savior! That's our task now and we welcome it!
So, with all that being said, we are ECSTATIC and, again, we feel blessed beyond our senses with such a wonderful report today --in fact, THE DOCTOR ENDED IAN'S LASIX TODAY SO NO MORE MEDICINE EITHER FOR THE POOR CHILD! He's had more doses of medicine in his short life than most of us will take in our entire lives! We are so thankful, because that means the doctors truly believe he is HEALED!
I mentioned at the very beginning of the post that we needed your help. You have been such strong supporters of our family over the past year and we ask for one more show of your love. We would like for you to help us bring awareness to a bill that is currently in the House and Senate called the Congenital Heart Futures Act. The bill aims to increase research and funding for congenital heart defects/failure. If you would like to support this bill, please take the time to contact your representative/senator and ask them to support or co-sponsor the bill. Here's how you can help:
1. Go to http://www.senate.gov and http://www.house.gov to look up your representatives and their email address.
2. Draft your email - Here is a template we will use for Ian to get you started.
Dear [Lawmaker name here]
I am writing as a concerned constituent to ask for your help in making a brighter future for all those born with heart defects. Yesterday the Congenital Heart Futures Act, legislation calling for research, surveillance, and education in congenital heart disease, was introduced in the Senate by Senators Durbin and Cochran and in the House by Representatives Bilirakis and Space. I am writing to ask you to co-sponsor these bills (S. 621 and H.R. 1570) and help all those born with heart defects live longer, healthier lives.
Congenital heart disease is this country’s number one birth defect and kills twice as many children as childhood cancer. Although many children now undergo successful heart repair, most will require special life-long care and face high risks of developing additional heart problems. But up until now there has been virtually no federal investment to address the research and education needs of the 1.8 million Americans now living with congenital heart disease.
My friends, Stewart & Jennifer Bloodworth of South Carolina, gave birth to a son with a complex heart defect who underwent two open heart surgeries before he was 8 months old. I want to be hopeful for his future, but right now I know there is a severe lack of research, awareness, and resources available to help us help him do well as he gets older. Please help me help their son survive to become a healthy, productive parent and grandparent.
___
To sign on as a co-sponsor of the bill, House Members should contact Dan Farmer with Rep. Space at (202) 225-6265 to discuss support of H.R. 1570. Senators should contact Sara Singleton with Senator Durbin at (202) 224-2152 re: S. 621.
Thank you in advance for your help in securing a future for all those living with congenital heart disease.
Sincerely,
[name]
[full mailing address]
[email]
Your support of this effort is so much appreciated. It will take a few minutes of your time but I would hope that our journey has enlightened you as to what so many families face, that you would be willing to help! I am more than happy to print the letter out and mail it to you so that you can forward it on to your Senator/Representative.
I do apologize for the length of this update but we are so blessed tonight and we pray that you will rejoice with us as we give all the glory to God - He has been our anchor since the beginning and we are thankful that he chose us to walk this path!
We love you all and will update again very soon!
Jennifer, Stewart, Ian & Bonner
P.S. Ian is getting ready to push through his 2nd tooth, but that first one is really shining. Bonner has had 2 pop through but they aren't quite as apparent as his is ... it is so cute! The new welcome picture was taken tonight! They turned 8 months yesterday!
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