My friend and fellow heart mom - Stefenie is once again sharing "Every heart has a story ... " on her blog, Here linking and connecting heart families across the world to help connect and support each other but also the main purpose is to spread awareness of CHD ( Congenital Heart Defects). Stop by her blog and read these stories, you will be very BLESSED . 1 in 100 CHILDREN WILL BE BORN WITH A CHD.... What if 1 of them was yours?? I never even knew about it until it happened to us... Spread Awareness and Create Hope ~! (Got this from another heart momma, Rhonda, but thought it was a good way to start this out!! :)
This is the Journey of OUR 1 in 100....
 |
| Kaden Anthony Insall |
From the beginning…. 
Kaden Anthony Insall was born Tuesday ,February 28, 2006. I had a wonderful pregnancy no problems what so ever! I was 3 weeks from Kaden’s due date and was going for yet another check up. They asked if I’ve been having any headaches. I said no…Well come to find out my blood pressure was sky high! They sent me over to labor and delivery to be monitored. After 3-4 hours my doctor came and said, “It’s your choice but whatever you choose you aren’t leaving…”, so I was thinking ok it’s time. He preceded to tell me that he could induce me and have a chance of having seizures or a stroke because of the stress with my blood pressure and still have 50/50 chance of having a c-section or he could schedule the c-section for that evening. So Duh I chose the c-section. At the time my husband and I had no clue there was anything wrong with our soon to be precious little boy.
At 5:25 pm Kaden made his grand entrance into this world weighing in at 7lbs 8.6 oz and measuring 19 ins long and screaming his head off!
…Shortly after we were told that they heard a heart murmur but not to worry MOST of them go away. No biggie right? …Or so we thought. Everything continued to go well. Kaden had a round with jaundice and were kept longer in the hospital so they could treat him for that.
Sunday, March 5, we were able to finally take our little pride and joy home!
March 15, 2006, we took Kaden back for his 2 week check up. To our surprise his heart murmur was still there. So his pediatrician then referred us to a wonderful amazing woman we would soon get very close to…Dr. Lee Ann Pearse. On March 17th we were taking our little boy to see his cardiologist, that’s the day Dr. Pearse told us our son has Aortic Stenosis. From that moment on we would have more knowledge than we thought we would ever have about the aortic valve. We learned a month later that our son’s aortic valve was bicuspid and he could have surgery anywhere between 2-4 months old. God had a different plan though Kaden never had to have a surgery done…
Fast forward to April 10, 2008. We took him for a check up and to learn the balloon procedure would no longer work, because his valve was now leaking. So Dr. Pearse scheduled a catherization to get a better idea what was going on in his little heart. April 24, we took him to have it done. From the results we found out his leakage was mild and the valve was leaking between his leaflets which means when he will have to have a surgery it would have to be the ROSS procedure, but he shouldn’t have to get it done until he is a teenager. Praise the Lord!…
We continue to take him off and on anywhere from year to 6 months. Our last visit was on August 12, 2010. We found out that his valve is leaking quite a bit more. The wonderful thing about this is Dr. Pearse and us don’t agree with the ROSS procedure…so she is thinking his valve could be repaired. Wonderful news, but we have to find a surgeon we want to perform open heart surgery on our little boy. We take him back in 3 months (Nov 22) to have him reevaluated again since the two previous appointments (May 09 and Nov 09) Kaden didn’t corporate very well and was fighting us as well as the nurses, and Aug 12th he was a little angel didn’t fight what so ever so we are hopeing he does the same in November.
We were told it could be time for surgery anywhere from 6 months - 5 years. So obviously waiting until a teenager was out of the picture but at least they can repair it. So this is where we stand. Praying to God for a miracle but asking for guidance on our decision for a surgeon. We’ve been so blessed with the CHD community! Without the support of our “Heart Family” there’s no way I would still be sane through all of this. Lol. We’ve learned so much from watching our child grow and learn with a heart problem, he just never lets ANYTHING get in his way.
If you want to talk more or if your child had a aortic valve repaired please let us know. We think we are going to be using Dr. Fraser in Houston, but we don't want to make any sudden decisions. He's just the one we have found so far with more experience.
UPDATE SINCE LAST POSTED THIS A YEAR AGO:
My husand and I have decided to have Dr. Fraser operate on Kaden.
So on Feb 4th, 2011, we took Kaden to Texas Children's Hospital in Houston, Tx, so Dr. Fraser could evaluate him himself and see where he stood from their exam. Kaden did wonderfully this time as well and he LOVED going and staying in the hotel while we were down there. From this appointment Dr. F (I don't know how to spell her name lol. but she is the cardiologist that sees Kaden when we take him down there) told us that his left ventricle was larger compared to back in November.
 |
| Such a trooper!..Hanging out with "Houston" while getting the echo. |
That she would expect him to have surgery this summer. Talk about being heart broken. I just broke down but tried to keep it under control because Kaden was in the room. We then saw Dr. Fraser's nurse and she was like he's just a healthy little boy huh? and I was like oh yeah, then she proceeded to say "He just has a silly old heart", that he does. Then we saw Dr. Fraser and he agreed that surgery would have to be soon. I then informed him that I was due to have our baby June 3. He didn't like the idea of me having a newborn with a child recovering from open heart surgery so then he decided he push it up to late March or early April. Once again I couldn't break down there with Kaden, I just didn't want him to see me that way. We were handed a BLACK...out of all colors...folder. Inside it was booklets, sheets, all sorts of information on pediatric open heart surgery. It just hit me that this is actually going to happen...and SOON! So we left that appointment and started our 5 1/2 hour drive back home. Thinking. Wondering. Worrying. Praying. Crying. and Praying some more. Yes we knew Kaden would have to have surgery one day. We knew this. But with surgery been thrown in our faces two times before and by the Grace of God it never happened I guess I was just kinda expecting the same thing this time around, but no. Or so we thought...
Late March, I still haven't heard from Dr. Fraser about surgery date, so I e-mailed his nurse and asked if there was a date yet or what was taking place. Well come to find out during one of their (Dr. Fraser along with all of the surgeons and cardiologists there on staff at Texas Children's) conferences they brought Kaden's case up. Well come to find out they disagreed on performing Kaden's surgery. They didn't think it was time. Since Kaden doesn't show any symptoms and his left ventricle isn't TOO large, they decided this wasn't the time to do it. They were planning on repairing his aortic valve but as you heart parents know, it doesn't always goes as planned and it could end up him needing the ROSS therefore leading to more open heart surgeries because with him being only 5 he will out grow them fast...So by the Grace of God, yet again...surgery was pushed off...Thank God! but he did want to see Kaden back in early April to have to him re evaluated to make sure everything still looks good. Dr. Pearse then put Kaden on Enalapril to see if it would help.
April 6th, we took him back again to have a check up. Thankfully everything remain stable! Praise God! But he did want to keep a close eye on Kaden. We could either go to his local cardiologist in or Houston, but he wanted Kaden to be seen every 4-6 months. Thank you Jesus! We were able to now focus on our new to be bundle of joy!
June 2nd, Kaden became a big brother to his adorable little sister, Bethany Kate. She was born with a head full of hair and most importantly...NO heart murmur!!!...
June 23rd, we took both of them for heart check ups! Bethany is heart healthy!..Although Dr. Pearse did make our heart drop, when she came in and started the sentence with..."All she has..." Which is a very small ASD but said all babies that age usually have it and they grow back before a year old, even if it didn't there's nothing they will do with it. So she's good there, but we are going to take her back in a year to make sure it is closed.
As for Mr. Kaden...in the words of Dr. Pearse "His heart is liking the Enalapril!"....Everything looked good no changes and we don't have to take him back for another 6 months. Woo Hoo!! God is good!
I don't know where Kaden's heart journey will take us. I don't know if he will every have to have that open heart surgery, I would like to think not, but I know he probably will. I just wish he could grow up being proud of his special heart God has blessed him with. I know it has blessed me. I've learned to live life from day to day. I've learned not to take the little things for granted. I've learned that getting my nursing degree isn't important as compared to raising and staying home with my children. I know I will get that nursing degree one day, but right now I'm enjoying my two precious miracles God has blessed me with. Hard to believe he will be starting kindergarten on Monday. My lil boy is growing up on me!!
To say I wish this never had happened to us, is wrong. Yes, I wish Kaden wouldn't have to go through all the pain and suffering, that I wish wouldn't have to happen, but having his special heart has opened my eyes to the REAL life. Loving people. Caring for people. Telling people how amazing God is through Kaden's CHD journey. It's amazing. Without God, family, heart families, and friends I don't know where I would be in all of this. Thank you to each and everyone who has supported, prayed, and just loved us throughout our journey. I appreciate it beyond words so don't stop! Ha. There are some amazing angels here on earth. Please keep Kaden in your prayers as he faces his next cardio appointment in December. Thanks for reading. Take care and May God bless you all!!
With love from the ♥
The Insall family,
Derek,Kaci,
Kaden and Bethany.
http://pinterest.com/ruth_h/the-faces-of-chd-congenital-heart-awareness-week-f/
