Our little Superman!
Now that I’m a parent I find myself saying things I never would have imagined actually saying as a parent. Like yesterday, when I found myself saying this to my son’s cardiologist:
“The hole in my son’s heart’s only 1mm?!”
Ha,ha…who would have ever thought!
Yesterday Noah had a follow up appointment with his cardiologist, and we got some news we weren’t really expecting. Not necessarily bad news, just unexpected.
Since many you may not have been following our son’s story from the very beginning, I thought I’d give you a quick time line of his heart conditions, including an update from yesterday’s appointment.
Our First Concern, Noah’s Heart.
In case you haven’t read Noah’s birth story, he was born on Dec 15, 2010 (he’s 20 month’s old) and we found out he had Down syndrome a few hours after his birth. My wife’s first question to our pediatrician was, “Is his heart ok?” (By the way, I love the fact that the first thing on her mind was his heart, not him having Down syndrome. I love my wife.) 
Speaking of hearts….he stole ours since before he was born!
My wife’s a pediatrician and is well aware that children born with Down syndrome often are born with serious heart complications. One of those is an AV Canal which often requires open heart surgery right away; thankfully Noah did not have this. Our pediatrician reassured us that although she could hear a small heart murmur, there were no major problems with his heart. She told us the the cardiologist would be in the next day to do a full exam on Noah’s heart.
Noah’s Heart At Birth
The next day we learned from our son’s (awesome) cardiologist that he was born with 2 smallholes in his heart; an Atrial Septal Defect (ASD), and a Patent Ductus Arteriosus (PDA.) Since my wife’s a Doctor sometimes Noah’s Doctors rush through things without explaining them well, assuming that she already knows it all (she’ll be the first to tell you she doesn’t) but not Noah’s cardiologist.
Not only did he take his time explaining everything to us, he drew us these really fun pictures as well. (I like pictures!)
I’ll never forget the day I got this picture!
We were told there weren’t any immediate concerns with Noah’s heart and we just needed to schedule a follow up appointment in a few months to see how things were progressing.
Noah’s 2 Month Cardiologist Follow Up
This was our first official visit with Noah’s heart doctor and we got some great news! The PDA that was there had completely closed up on its own, and the ASD had shrunk to only 5mmwide! Woot!
1 Down, 1 To go!
We were told to schedule a follow up in 6 months and if the ASD got smaller, or remained the same size, no surgery would be required to fix it! However if it enlarged we would have to talk about what the next steps were on fixing it. This of course made me extremely nervous. Who wants to think about the “next step” for their infant, when we all know the next step” is really doctor code for heart surgery. Not me.
Noah’s 8 Month Follow Up
On today’s visit we received some more fantastic news, Noah’s ASD had shrunk down to only2mm!!! And as you can imagine we were extremely happy to hear that. (Be sure to check out the videos and pictures from that visit.)
In fact, today’s visit was so good they didn’t even have to draw us one of those pretty heart diagrams!
Waiting to find out if our son was going to have to have heart surgery (do I look nervous?)
Noah’s cardiologist informed us that the hole in his heart was so small that even if it never closed up it wouldn’t cause him any problems what so ever in the future. In fact, they wouldn’t even need to do anything to correct it. She was also fairly confidant that by the time we came back for our next follow up (in 12 months) it would be closed up as well.
(I liked that option a lot better!)
Noah’s 20 Month Check Up (Yesterday’s Appointment)
Yesterday we went to Noah’s cardiologist fully expecting for Noah’s remaining heart hole (the ASD) to be closed up…and being told we never had to visit the heart doctor again….
….but it’s never that easy, is it?
There’s nothing a little Winnie The Pooh Can’t Fix!
After Noah’s EKG and echocardiogram we waited patiently for his cardiologist to come in and tell us the good news.
After examining him, and listening to his heart she said “everything looks great!” But before I could say Yah! Sweet! Awesome! she added,
“The ASD has shrunk down to 1mm, and it looks that PDA we thought had closed, is still open.”
Umm. Wait? Are you telling me that Noah came to the hospital with one hole in his heart, and now he’s leaving with two? I thought you just said everything looked great? The last time I checked having two holes in your heart isn’t great. (By the way, I didn’t say any of this out loud.)
She goes on to tell us that the the PDA that we thought had closed over 18 months ago is so small that it didn’t even show up during the last two echocardiogram, and they just happen to see it during today. (Perhaps because Noah was lying so still this time, while the last few time he was moving all about?)
He’s just chilling.
She assured us that is was no big deal at all, and both of his heart defects are so small that they would never cause him any problems, and would never require any surgery what so ever. So it was actually great news! But like I said above, it just wasn’t what we expected to hear.
Oh, and this time we got another one of those fun pictures.
I’m A Crier, And I’m Not Afraid To Admit It!
Even though it we were getting fantastic news, I started tearing up as soon she started talking to us about his heart. Not so much because the news was bad or anything. It had more to do with the fact that just a few weeks ago I stood in a NICU room praying with our friend and his 12 month old little boy who was lying there was with his chest wide open and hooked up to countless machines that were keeping him alive. He had just had a open heart surgery the day before, and there were some complications. His mom and dad hurt, and my wife and I hurt with them.
That little boy’s name is Carson, and he’s back home now and doing fantastic. But, I’m stillvery sensitive when I think about all that they went through, and they were on my heart and mind today as we were talking about Noah’s heart. But it’s all good. I have no shame in admitting that I’m a cry baby! Good thing my wife is 3 million times tougher than me!
We’ll visit the cardiologist again in 18 months just to have another check up and make sure everything is A-OK with his heart. Fantastic.
Thank You. Thank You. Thank You.
We wanted to say thank you so much to all of our friends on Twitter and Facebook for loving on our son so much. We really appreciate all of your prayers and support I’ve said this a million times, but we really do consider you guys our friends. Thanks for all of your encouragement, and for being a part of our story with us. It really means a lot to us to know that are so many people care about our son. Thank you also for sharing your stories with us. We enjoy getting to know each and every one of you!
What has been your experience with your child’s heart / cardiologist / surgeries, etc? I know there are a lot of amazing stories out there, and I would love to hear them if you’d be willing to share. Also, I know your stories will also encourage other parents who may be going through a fearful time. Please take a moment to leave a comment below and share your “heart story” with us!
About Rick Smith
Like you guys on Facebook for awhile and clicked on the link about Noah being a big brother. Congratulations on the new baby. Then this was at the bottom of Noah being a big brother. Caught my eye because I am 24 years old and was born with heart condition. Had surgery at 12 years old. After reading this blog post just wanted to say that heart issues can be scary but it makes someone a fighter which Noah is already. The lesson that I have learned from having a Congenital Heart Defect is that everyone is the same and wants to be treated the same. Even though I don’t know you personally or have even meet you I know that Noah is an amazing and adorable little boy. He will be a strong person l and a fighter, because being strong doesn’t always mean you have big muscles it means you have been through something that makes you strong!
I totally agree with you! Thanks so much for your comment and your kind words!
First of all, let me say, Noah is so adorable! I have found myself going back days that I missed, just so I know what Noah is up too!
My oldest grandaughter (now 10 yrs old) was born with the AV Canal defect and had her first heart surgery when she was 4 months old. Which at that time we were told that she would eventually have to have another one as she gets older. She is fixing to undergo her 2nd heart surgery on October 8th. I could tell you why but would probably get it all mixed up and it wouldn’t sound right. I can say that it has to do with the scar tissue and leakage is around 49% (well was back in June when they did a heart catherization test).
I think the hardest part right now is trying not to show the anxiety in front of Lele (grandaughter’s nickname) and keep explaining to her that she is fixing to have surgery on her heart.
Lastly, congrats on the soon to be addition to the family! I can tell you now, Noah will love being a big brother! My little Lele is a big sister to both a sister and a brother. And just let me say, don’t be surprised if Noah and his little brother/sister are talking in their own language! Don’t try to figure it out, cuz they’ll change it right as your figuring it out.
Hey Noahs Dad, it’s Sally again 🙂 I am so busy even though I’m a stay at home Mommy! I just read your blogs. Malachi had a very bad Heart. He had Complete AV Canal Defect and Cardiac Deformities. I was told I could go ahead and abort because he was not going to make it anyways.They thought he didn’t even have the left side of his Heart but right before I had him…he grew a small left side which made all the difference! I chose to let God make that decision…not me. They didn’t think he had DS because he seemed perfect except for his Heart. When he was born at Houston Texas Childrens…with DS, they were shocked at how wonderful he was doing. At 6 days old he had surgery on his Heart because his Aorta was so small and would colapse. At 6 months old he had his second surgery and he was not supposed to make it because he caught a chest cold. Chest colds and his Defect did not go together…at all!!!. There were a lot of ups and downs and I’m happy to say that now he is 7 years old and doing great! It’s the scariest thing to EVER go through!!! I never worried about DS but his Heart had me so worried! Now he is PERFECT! Drs give the worse case scenario but in the end…it’s up to God♥
first of all i want to say that Noah is such adorable little boy. i was informed that my boy has downsyndrome after when he was born. and he has 2 holes in his heart. one was just 2mm (later it wasclsed on his own) the other hole was little bit bigger 7 mm. but they told us to watch maybe it will close by his own. told us to come 3 months later. went to the cardiologist when he was 3 months and the big hole was 10 mm. they told me that my son have to to surgery urgently but in my country they dont to surgery on that young age. they give me 2 months or your baby will have heart issues.that day was one of my darkest day of my life. i applyed to the hospitals of Germany, India, korea, usa, china. all of them replyed have to check him firts. so ended up going to china because by plane it will take only 2 and half hours. others were to far away. he had his durgery when he was 3 and half months old. and by that time his hole opened 17 mm. it required open heart. 10 day he was on PICU and i was not allowed to see him. i just saw my boy on the day he was discharged from hospital. that 10 days were the longest and hardest 10 day in my life. but now he is fully recovered . your blog is the first blog that i have read after my boy was born.and noah and your family was the big inspiration for me to raise a child with down syndrome even my little. boy has older brother and sister 🙂