A Cardiology Visit

We visited with Miss K's EP Cardiologist yesterday for her regular 6 month check up.  It actually went really well!  Miss K didn't cry, she was a bit cranky from a long day and not much of a nap to speak of, but otherwise fairly cooperative.  She let us do the EKG without a fuss and it read normal for her as always.  Our Cardiologist was impressed with her, he could still hear her murmur we found last year but still is not concerned about it.  He also said she has not gained enough weight for a medication adjustment, he's not surprised with her lack of gain and advised me that between now and age 5 she likely won't gain more than 4-5 pounds, if she even gains at all, for the most part this slow weight gain is normal for the age, Miss K is just unique in that she's so tiny to begin with.  She is barely tipping the scales at 23 pounds even, she's about 34 1/2 inches tall.  While I, and others, are hoping for a good weight gain from her in the next 6 months to a year her Cardiologist is content having her stay in this weight area to avid medication adjustments lol, it's kind of a "rock and a hard spot" sort of thing, we want her to grow and gain weight like she should but we don't want to have to give her more medications.

I asked about Miss K's little episode a few weeks ago, (here), he was concerned about the symptoms BUT he swears they are not cardiac related in any way.  He said from a Cardiology standpoint there is nothing related to the heart or it's function that would cause very slow heart rate, very low body temperature and profuse sweating all together like Miss K was that day.  He assured me without a doubt that her symptoms were not the result of an SVT episode, he's never known, read about, or heard of an SVT episode causing these symptoms all together, even the most severe episodes.  He speculated that a medication overdose of either of her medications could possibly cause this reaction BUT Daddy and I are 100%, without any doubt at all, sure that we did not overdose her medications the night before, nor did we issue them too early (to close to her last dose).  He said the only thing he knows of that causes these symptoms all together is the "D" word, a word he didn't want to even mention, I'm sure most anyone can figure out what word that is.  It scared me.  It has him worried.  But it's nothing he can diagnose, he can't even refer us to someone who can diagnose it because he's never heard of it happening except in the case of the "D" word.  We're back to square one figuring that day out.  I don't know if I want to just leave it be and wait for it to happen again or if I want to further investigate, I don't even know where to begin to look for information about it.

Otherwise, Miss K looks and sounds great for her "normal" from a Cardiology stand point.  We're to see if we can go a whole 6 months without needing a visit, if she doesn't gain weight in the next 6 months then we are to wait a year to see him, he doesn't see any reason to see her unless she gains or is having frequent SVT.  We continue to give her 3.2mL Propranolol 3 times a day and 1.2mL Digoxin twice a day.

Before our appointment we had the opportunity to meet and play with one of Miss K's heart sisters, Brielle!  It is such a blessing to know other kiddos with PJRT but an even bigger blessing to know one that lives close enough to meet and plan dates with!  This was our first time we both were available and I was driving up their direction anyway for our Cardiology appointment so we decided to take advantage.  We met up at Utah's Thanksgiving Pointe and explored the Dinosaur Museum together.  It was so much fun and so great to get the girls together.  Brielle is such an adorable little girl and her mama is a real sweetheart, I love how much we have in common.  I hope we get to see each other more often! 

6 Month Check Up

Miss K saw Cardiology today. Getting an EKG wasn't as bad as last time, I was way more prepared for her reaction lol, I took her favorite blanket and beloved "Bow" the elephant in with us to help calm her and this times nurse let me hold her while we put the "stickers" on, hooked her all up and even let me keep holding her through the EKG (the last nurse swore it would mess with the reading and wouldn't let me hold her), we wrapped her in her blanket and put stickers on "Bow" and she calmed right down for the whole reading, got a somewhat normal heart rate for her EP Cardiologist to look at . Since we just saw him a month ago for her Bradycardia scare today wasn't really necessary but he failed to mention that until he realized who he was seeing lol, he felt bad for having us come in but I was happy to do it since last time was a fly by just for an EKG reading we didn't get to really talk with him, this time I took as much of his time as I could and we really talked .

Miss K is doing great according to her EP Cardiologist.  He feels that since she hasn't had any known SVT since December that she may very well have outgrown her PJRT! But he also doesn't want to push our luck and is going to keep her on her Digoxin and Propanolol until she's 3 years before trying any lowering of doses or stopping all together just in case she isn't having SVT solely because of lack of weight gain, we will see if this is the case in a year IF she isn't like her big brother and instead gains some more weight in the next year lol. Her murmur that we just found in March is still there but he says it's not a hole, it's just a different sound in her heart and over 80% people have this different sound and he's sure it's harmless because all her past Echo's have shown a perfect structure and no defect.

Some readers tend to take news like this out of perspective.  That last paragraph does not mean Miss K is now "OK", it by far does not mean that she HAS outgrown her PJRT nor does it mean we are out of the danger zone at all.  SVT free for over 1 year can still just mean her medications are working, a lot of kids who go that long have been taken off of their medications and have had severe SVT resulting within days or weeks of the medications leaving their systems.  Miss K has only gone 8 months SVT free, we MUST take into consideration that she has barely gained just 1 pound since last October when we started the Digoxin and adjusted her Propanolol dose.  There is a very great chance that she has been SVT free this long only because she has not gained much weight.  I am completely OK with following the EP Cardiologists recommendation to keep Miss K on both medications at their current doses until she is 3, it seems a bit reckless to start weaning off of either medication right now, we need to be careful with this process and take it slowly and one step at a time.  We also need to remember that PJRT is not a temporary condition, even if a child is considered to have outgrown it it has a very high potential of presenting itself again later in teen years or as an adult.  This is a serious heart condition that is NOT going to just go away forever, we can always hope that it will but we MUST remember that it is very unlikely.

Heart Murmurs

Little D had his 2 month well child exam this week, he's doing great :o).  And I absolutely love our Pediatrician, he is so on track and knows everything that's going on with his patients.  The minute he walked into the exam room he said "so a healthy, clean heart report from the Cardiologist huh?", he had received and reviewed the notes from Miss K's EP Cardiologist about Little D.  Strange he did not mentioned the murmur he had heard.  When I told the Pediatrician that the EP Cardiologist had heard a murmur he was quick to listen for himself.  He said that if I hadn't of mentioned it he never would have heard the murmur because it's so faint you'd have to be listening for it specifically to hear it.  This is apparently a very good thing.  He explained the murmur is just the blood flow from heart to lungs make a small turn about before completing the cycle, not necessarily a hole in his heart anywhere.  Completely normal and should be outgrown quite soon.

I mentioned Miss K's new found murmur while we were there, I was disappointed that I was not able to take Miss K with me to this appointment, I'm still not comfortable taking her and the baby anywhere alone since she still needs to be carried through parking lots and public places and the baby also needs carrying, I'm not that talented yet lol.  I wanted to know his thoughts anyway, even if he couldn't have a listen for himself.  He was wonderful about explaining it.  Apparently when a murmur is suddenly heard in an older child it means it has always been there, it's nothing new.  When the murmur is found later in childhood it's an existing hole that was very large in the beginning and the blood flow through it was moving so fast that it makes it sound like a normal heart sound, they are usually seen on an echo if one happens to be done, as the hole gets smaller with the child's growth it is more and more noticeably heard with a stethoscope.  This would be the reason Miss K's EP Cardiologist was surprised to hear the murmur at her last appointment, she has had so many echo's and EKG's that it is strange for them to have not found it before.  I'm not sure what to think here.  In a way I'm relieved they never found it before, but I'm also nervous about it.  If they had seen it on an echo in her first few weeks of life they may have likely panicked and, depending on where it is and how bad it is, she may have been sent in for open heart surgery to close it.  It's a possibility this hole has been the cause of her persistent SVT, if so, and we had had open heart surgery, she may not have had to battle SVT at all afterwards, which definitely would have been wonderful.  But, I am so relieved they did not find this hole and that it did not need repair when she was little.  I could not have handled open heart surgery on my tiny baby and I am very happy we did not have to go through that.  I'm also extremely thankful that this hole hasn't caused any issues with her, other than possibly being the cause of her SVT, it would have been scary to have other issues with her heart.

I'm happy to say I feel a bit better after this little chat with the Pediatrician.  He made it all sound OK, and it's definitely a good thing that this hole in her heart is getting smaller.

On another note...Miss K has made it 4 months SVT free!  This is THE longest stretch we have ever had between episodes.  YAY MISS K!  Here's to hoping this stretch is a very, very long one.  6 months or a year SVT free would be heavenly :o).  Dang, I sure hope I didn't jinx it by typing this up.  Everyone **Knock on wood** a few times for us!

Cardiology Visit

Today went quite well at the EP Cardiologist!  And he was kind enough to take some time to check Little D's heart as well for my own peace of mind :o).

Miss K first...

Still weighing in at 18 pounds even.  And has decided she hates the blood pressure cuff and the EKG "stickers" though she is totally fine with the doctors listening to her heart with a stethoscope lol.  Her EKG is perfectly normal.  Her heart rate was 110 BPM.  Blood pressure was a bit high but she was wiggling through the check so the assistant is sure it wasn't accurate.  The EP Cardiologist listened to her heart extra long today and diagnosed her with having a small murmur :o(, something we did not know before.  But he's not concerned mainly because her EKG is normal.  Now I am concerned though lol, my Mommy brain is working extra hard on it wondering if it's a genetic thing or if it was caused by medications or SVT episodes, etc., etc., etc.  As long as the EP Cardiologist is keeping an eye on her I may be able to relax though, and lucky for us I don't have the time to research it to a large extent and have "Dr. Google" scare me lol.  Miss K is doing great on her 3.2mL Propanolol 3 times a day and 1.2mL Digoxin twice a day.  We have seen no SVT episodes since just before Christmas **Knock on wood!** and the EP Cardiologist was happy to hear it, especially happy to hear it wasn't unexplained, that it was caused by a fever and dehydration and it was easy to break.  We haven't talked to him in person since before he prescribed Digoxin over the phone so today he talked a bit more in depth about his thoughts on that.  He said normally when a child is started on a medication like Amiodarone they are not able to put them on a beta blocker successfully, Miss K is a rare case and he is surprised we have been successful putting her on the Digoxin after taking her off of Amiodarone :o).  So the new plan is to keep her on her current medications and doses and wait and see what happens.  Little did I know this follow up schedule we've been following is not "normal" protocol for SVT patients, to us it is "normal" because it's all we know.  Today our EP Cardiologist told us he usually see's his SVT patients 2 months after initial diagnosis and then every 6 months until 18 months old and then he moves them to once a year until all is well.  Miss K went every 2 months from the day of diagnosis and wasn't moved to 6 month "status" until she was 13 months old, now at 19 months she's still at 6 month "status" unless I feel she is doing great and I'm not concerned about anything, in which case I can push her next appointment to a year.  So, other than her new murmur, Miss K is doing great with her PJRT :o).

Little D...

Birth weight was 7 pounds 4 ounces and length was 18 inches...he's now 5 weeks old and weighs 10 pounds 1 ounce and is 23.5 inches.  He's most definitely growing well, he has Big Brother and Miss K beat on the weight at this point as both of them took until 4-5 months old to hit 10 pounds lol.  We did not do an EKG, the EP Cardiologist did not feel it was necessary today, we did try to get a blood pressure but he wouldn't hold still so we never got a reading at all.  The EP Cardiologist listened to his heart for a good, long time and diagnosed him with a murmur as well :o(.  As of right now he feels it's a normal newborn murmur that he will most likely outgrow.  He does not want any follow up appointments with him, he just told me to ask the Pediatrician if he heard it at his 2 week check up and to ask him to keep a close eye on it himself, if the Pediatrician feels it's a complication he will send us to the Cardiologist in the future.

After hearing that two of my littles have a heart murmur I am concerned about Big Brother.  I wish I could have predicted this, I would have taken Big Brother into the exam room with me rather than leaving him with Grandma in the waiting area, this way the EP Cardiologist could have listened to his heart as well.  Now I plan to take Big Brother with me to Little D's 2 month well child exam and ask our Pediatrician to listen very well and make sure he doesn't hear anything.  Yes, I'm being paranoid Mommy here but I need to know that all 3 of my kiddos are OK.  On a lighter note here, we did have Big Brother checked out by the Pediatrician last fall when he told me his heart was "growling" at him and "beating faster", they even went as far as doing an EKG for my peace of mind and it came back normal, the Pediatrician decided it was more than likely Big Brother's Reflux rearing it's head again rather than anything to do with his heart.  At least we have had a normal EKG reading and I can feel that IF he has a murmur it's apparently not affecting him in any harmful way.  I will update when I get him in to be checked out.

Whew.  What a long day dragging 3 kids around all day, so glad I didn't try that adventure alone!  I asked my mom to come with and she ended up bringing my little sister so I had 4 extra hands and it was a very good thing, Grandma was able to help with Big Brother in the waiting area (my little sister's choice since she didn't feel comfortable waiting out there without an adult {she's only 13}) and my sister came to the exam room with me to help with the two kids, which was a huge help since it ended up being extremely chaotic WITH her help, I can't imagine how much harder it would have been with just me in there!  So glad the day is over, even with the new information and worries, at least we all made it through our first real adventure out of the house with 3 kids lol, not sure I want to do it again for quite a while.