I never thought I would EVER get to say "Miss K has been SVT free for over 4 months". This is a huge milestone for her! Her last SVT episode was mid December 2012. I'd love to say I have relaxed but I'm actually not calm about this at all, I keep waiting for the bomb to drop, it's like we're walking on egg shells and any moment they're all going to smash to dust. The absolute longest Miss K has ever gone SVT free was 3 months. We're a month past that and still moving right along. I really hope I didn't jinx it by telling everyone. Let's all just **Knock on Wood** just in case.
About a month ago we found an app for checking heart rate. Daddy just recently upgraded to a smart phone a few months ago and we were eager to see what there was for heart apps. Amazingly we found a whole bunch of heart rate apps for free. We downloaded a few and tried them all on Miss K and ourselves to find which one seemed most accurate. Turns out the best free heart rate app we found is called Cardiograph and it works pretty well if used correctly. So now whenever we feel we need to check Miss K's heart we pull out one of our phones and get the Cardiograph app going. Of course she hasn't had any SVT episodes for us to see if it will chart a heart rate that high but that's OK, I'd rather not know at all than have her go into SVT and get to try it out.
Miss K is doing great. She's been very cranky with her Eye Teeth (or Canine Teeth) slowly coming in. They're taking their dear sweet time and putting her through a lot of misery, I wish they would just pop through and be done but instead they come in and then swell up and disappear again. The poor thing is grinding her teeth and chewing on anything soft that she can get her hands on. She is also refusing to eat a lot of foods, practically living off of yogurt lately, she likes the cold on her teeth and it doesn't take any work to chew it up.
She is potty training as well. Yes, I do encourage early potty training. Big Brother started potty training at 21 months, my choice, not his, but he was ready and didn't argue it one bit, by 22 months he was completely potty trained and mostly accident free. Miss K has a very different personality than Big Brother though so I did not plan to just drop everything and take a week potty training her. I knew to take my time and let her decide it was time on her own. At 18 months old she decided that if Big Brother was peeing on the potty she needed to as well, she surprised us by asking to go potty out of the blue one day. After that first day we pulled out our potty training frog potty and put it in the bathroom Big Brother uses, from then on we encouraged her to use the frog potty any time Big Brother went potty. Some days she was OK with it and other days she wasn't. She sat on the potty with her diaper on more than with it off lol. But at 19 months she started asking to go potty constantly and was actually using the potty every time with minimal accidents in her diaper. So just after she turned 20 months I put the diapers away and put big girl panties on her, she was thrilled. Since then she has rarely had more than 1 accident each day, pee accidents that is, she is still having a very hard time pooping on the potty for us but we're just taking it one day at a time. It's nice to be down to just one in diapers again! Well, one in diapers full time anyway, of course Miss K is still in a diaper through the night and I'm still putting one on her during nap though most of the time she wakes up dry.
Everyone else is doing great! We can't wait for summer to grace us with its presence lol. This Utah mountain weather is really annoying at times. We've been going through many cold, miserable days with a bit of snow here and there and then suddenly we'll have 2-3 days of 70-75 degrees and sunshine but then after that small tease we're back to the cold, miserable snow days again. Mother Nature really needs to make up her mind and just stick to one or the other.
5.06.2013
Miracle Ryker
A year ago I posted about a sweet baby boy I had started following on Facebook and Blogger. Miracle Ryker is from Utah, his parents found out he had Heterotaxy and a list of heart defects and decided to share their story with the world via Facebook. I can't remember how I found out about them just before their baby was born but I do remember sitting next to them in the Cardiology waiting room at PCMC while there for one of Miss K's check-ups. I didn't say anything to them, all I did was smile and nod understandingly as they sat there waiting for their turn, Rachel was still expecting Ryker and I remember thinking how sad it was to see a young couple in there before even meeting their baby.
I followed Ryker's story from day one and fell in love with him and his amazing family. Just days after delivering Ryker and being told to take him home and love him, he wouldn't live more than 8 days, Ryker's sweet family decided to do all they could to save their son, they looked into Boston Children's and decided that's where they were supposed to be. Ryker's parents did all they could to get him to Boston for the best medical treatment available. They spent 14 months there, all but 8 weeks of that was in the hospital. Amazingly they were able to take Ryker to their Boston home for 8 whole weeks and then it all came crashing down. On April 26th Ryker lost his fight. Ryker is now pain free and perfect and whole in heaven.
I was devastated when I logged on to Facebook and the first post that came up was "At exactly 9:40am EST our sweet little Ryker earned his Angel Wings & left this earth to be in the loving arms of our Heavenly Father. We don't know how we will possibly make it through the night tonight without our little Miracle, let alone a lifetime! We love you Ryker, with all our whole hearts & we'll miss you more than words could ever possibly describe!!!" I cried my eyes out. So heartbreaking.
The heartbreak got worse as the week went on and I kept seeing posts from Miracle Ryker's page asking for donations and help preparing for his viewing and celebration of life services. I wish I could have helped them in some way but all I could do was offer my love and support. I attended Ryker's viewing Friday May 3rd. I didn't know if Rachel would know who I was, I spent a lot of my time standing in line trying to figure out how to let her know who I was. She and I had spoken over the phone a few times and I had helped her create a beautiful canvas through my company Heritage Makers, a few consultant friends of mine joined me in donating the money for Rachel to publish the canvas. I was surprised when it was my turn to give my respects, I walked up to the Warner family ready to have to explain myself when Rachel looked up from her temporary distraction and cried "LaCee! You came!", her tears flowed and she put her arms around me in a tight, heart wrenching hug. She went on to tell me how sweet I was and how grateful she was to see me. In my shock at not needing to tell her who I was, I completely lost all words. All I could do was let the tears fall and hold this sweet woman. I only wish I could have prevented myself from freezing up, like I tend to do, there were so many things I really wanted to say...I wanted to let her know how much I looked up to her and her family, how amazing she is as a mother, how strong she is and how lucky her children are to call her "Mom", so many things I wanted to say that all just got lost in my tears. I am so grateful I went. I wish with all my heart I could have made it to Ryker's celebration of life the next day.
Fly high sweet Ryker.
I followed Ryker's story from day one and fell in love with him and his amazing family. Just days after delivering Ryker and being told to take him home and love him, he wouldn't live more than 8 days, Ryker's sweet family decided to do all they could to save their son, they looked into Boston Children's and decided that's where they were supposed to be. Ryker's parents did all they could to get him to Boston for the best medical treatment available. They spent 14 months there, all but 8 weeks of that was in the hospital. Amazingly they were able to take Ryker to their Boston home for 8 whole weeks and then it all came crashing down. On April 26th Ryker lost his fight. Ryker is now pain free and perfect and whole in heaven.
I was devastated when I logged on to Facebook and the first post that came up was "At exactly 9:40am EST our sweet little Ryker earned his Angel Wings & left this earth to be in the loving arms of our Heavenly Father. We don't know how we will possibly make it through the night tonight without our little Miracle, let alone a lifetime! We love you Ryker, with all our whole hearts & we'll miss you more than words could ever possibly describe!!!" I cried my eyes out. So heartbreaking.
The heartbreak got worse as the week went on and I kept seeing posts from Miracle Ryker's page asking for donations and help preparing for his viewing and celebration of life services. I wish I could have helped them in some way but all I could do was offer my love and support. I attended Ryker's viewing Friday May 3rd. I didn't know if Rachel would know who I was, I spent a lot of my time standing in line trying to figure out how to let her know who I was. She and I had spoken over the phone a few times and I had helped her create a beautiful canvas through my company Heritage Makers, a few consultant friends of mine joined me in donating the money for Rachel to publish the canvas. I was surprised when it was my turn to give my respects, I walked up to the Warner family ready to have to explain myself when Rachel looked up from her temporary distraction and cried "LaCee! You came!", her tears flowed and she put her arms around me in a tight, heart wrenching hug. She went on to tell me how sweet I was and how grateful she was to see me. In my shock at not needing to tell her who I was, I completely lost all words. All I could do was let the tears fall and hold this sweet woman. I only wish I could have prevented myself from freezing up, like I tend to do, there were so many things I really wanted to say...I wanted to let her know how much I looked up to her and her family, how amazing she is as a mother, how strong she is and how lucky her children are to call her "Mom", so many things I wanted to say that all just got lost in my tears. I am so grateful I went. I wish with all my heart I could have made it to Ryker's celebration of life the next day.
Fly high sweet Ryker.
4.12.2013
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!
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!
3.12.2013
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.
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.
3.06.2013
18 Month Well Exam
Miss K had her 18 month well child check-up on February 15, yes that was about 2 weeks ago and I am very late updating about it lol. Having a newborn plus 2 kids under age 4 has been crazy busy around here!
Miss K is weighing in at a tiny 18 pounds even and is just over 36 inches tall. She may not weigh much but she sure looks pudgy! She has rolls and dimples that Big Brother never had lol. The Pediatrician was impressed with her, he's not a bit concerned with her weight, she's as healthy as can be (aside from her PJRT) and he doesn't feel there's any problem as of right now. Everything else checked out perfectly. And speaking of that little heart, thus far we have made it 2 months SVT free **Knock on wood** (lol). She's had missed or 1/2 doses of her Propanolol a few times due to spitting it out for some odd reason, she's usually really great about swallowing it but on some rare occasions she will dribble it down her chin loosing some or all of the dose. But these missed doses have not caused SVT (yay!). She has also had crying fits with breath holding that we were sure would cause an episode but, thankfully, they have not yet. And she loves to throw major tantrums, she kicks, screams, holds her breath, and throws herself down on the floor slamming her head down with all her body weight (thus making the tantrum worse because then she is also injured and screaming harder from that, go figure!), these tantrums always make us nervous as she gets herself so worked up her heart is racing and she is flushed from the exertion but her little heart keeps a normal rhythm never going much over 120 BPM during these fits.
Miss K has been on the same dosage of her medications since October 2012, nearly 6 months of no medication adjustments is so good for her! But we have to keep in mind that she hasn't gained significant weight since the last medication adjustment so that's most likely the biggest factor in not needing more of one or the other. So as of right now Miss K is taking 3mL Propanolol 3 times daily and 1.2mL Digoxin twice daily.
Miss K's next Cardiology appointment is in 1 week, March 12. I'm excited to hear how the EP Cardiologist feels she is doing. I am tempted to ask for a Holter monitor to see if she is having episodes we don't know about, I swear there have been a few times I have checked her heart with my hand or ear and it was surely in SVT but within the time it takes to grab a stethoscope her heart rate has changed and I have found that it is beating normal and fine, I really wonder if she is having episodes we don't catch and is converting out of them on her own, this would be a huge miracle for her since she has never in her 18 months of life converted out of SVT without a Physical Maneuver. But I hope I am very wrong, all I ever hope for is for her to truly be SVT free and eventually outgrow her PJRT!
Somehow we have been able to all stay healthy since our bout of the Flu back in December, again **knock on wood**! I hope we can all keep up this good health, it's nearly spring so flu and cold season should be coming to an end real soon. With a newborn in the house I have been extra cautious, I am determined to keep him healthy! RSV has been so bad this year I constantly fear any illness coming into our home and putting Little D in the hospital. I am so grateful we are almost past that time of year.
I will be back with another Miss K update sometime next week, I'm sure it will be all great news from the EP Cardiologist :o).
Miss K is weighing in at a tiny 18 pounds even and is just over 36 inches tall. She may not weigh much but she sure looks pudgy! She has rolls and dimples that Big Brother never had lol. The Pediatrician was impressed with her, he's not a bit concerned with her weight, she's as healthy as can be (aside from her PJRT) and he doesn't feel there's any problem as of right now. Everything else checked out perfectly. And speaking of that little heart, thus far we have made it 2 months SVT free **Knock on wood** (lol). She's had missed or 1/2 doses of her Propanolol a few times due to spitting it out for some odd reason, she's usually really great about swallowing it but on some rare occasions she will dribble it down her chin loosing some or all of the dose. But these missed doses have not caused SVT (yay!). She has also had crying fits with breath holding that we were sure would cause an episode but, thankfully, they have not yet. And she loves to throw major tantrums, she kicks, screams, holds her breath, and throws herself down on the floor slamming her head down with all her body weight (thus making the tantrum worse because then she is also injured and screaming harder from that, go figure!), these tantrums always make us nervous as she gets herself so worked up her heart is racing and she is flushed from the exertion but her little heart keeps a normal rhythm never going much over 120 BPM during these fits.
Miss K has been on the same dosage of her medications since October 2012, nearly 6 months of no medication adjustments is so good for her! But we have to keep in mind that she hasn't gained significant weight since the last medication adjustment so that's most likely the biggest factor in not needing more of one or the other. So as of right now Miss K is taking 3mL Propanolol 3 times daily and 1.2mL Digoxin twice daily.
Miss K's next Cardiology appointment is in 1 week, March 12. I'm excited to hear how the EP Cardiologist feels she is doing. I am tempted to ask for a Holter monitor to see if she is having episodes we don't know about, I swear there have been a few times I have checked her heart with my hand or ear and it was surely in SVT but within the time it takes to grab a stethoscope her heart rate has changed and I have found that it is beating normal and fine, I really wonder if she is having episodes we don't catch and is converting out of them on her own, this would be a huge miracle for her since she has never in her 18 months of life converted out of SVT without a Physical Maneuver. But I hope I am very wrong, all I ever hope for is for her to truly be SVT free and eventually outgrow her PJRT!
Somehow we have been able to all stay healthy since our bout of the Flu back in December, again **knock on wood**! I hope we can all keep up this good health, it's nearly spring so flu and cold season should be coming to an end real soon. With a newborn in the house I have been extra cautious, I am determined to keep him healthy! RSV has been so bad this year I constantly fear any illness coming into our home and putting Little D in the hospital. I am so grateful we are almost past that time of year.
I will be back with another Miss K update sometime next week, I'm sure it will be all great news from the EP Cardiologist :o).
2.09.2013
New Baby Brother
This past weekend, February 3rd, 2013, Miss K welcomed a new baby brother :o). We'll call him Little D here :o). I was so concerned about his heart health! I was terrified of having another SVT baby. I was sure to tell the Labor and Delivery nurse about Miss K's condition and I asked that Little D be watched closely once he was here. The nursing staff at our hospital was beyond awesome about this! The minute Little D was born they did a Pulse Ox test on him and thoroughly listened to his heart and lungs. He was perfect :o). Since I deliver my babies via c-section our hospital stays are 3-4 days long so we were in the hospital for a while. Through our stay the nursing staff was sure to take Little D to the nursery every 12 hours for a thorough workup, they did a pulse ox test every 12 hours and when the on call pediatrician assigned to Little D came in every morning the nursing staff had him listen to Little D's heart. It made me feel so reassured knowing the hospital staff took me quite seriously when I voiced my concerns and they were wonderful making sure Little D's heart really was OK. It has been an adjustment realizing we can let this little guy cry and get upset lol, at first I was way too quick to make the crying stop for fear of his heart. And yes, I have been paranoid enough to put my ear to Little D's chest at least twice a day, especially after a real good crying fit or a very long stretch of sleeping without much movement, to make sure his little heart is beating normal and steady. I don't think I'll ever get over this paranoia.
Thus far our new little guy is 100% healthy and fine :o). And Miss K absolutely loves him. She is constantly giving him hugs and kisses and asking where the baby is when she can't seem to find him herself. Big Brother also loves the new baby, he is excited to have a new playmate and keeps telling us he can't wait for Little D to be big enough to play with toys with him.
I had to be brave this past week and leave Miss K and Big Brother with Grandma and Grandpa while we welcomed our new little one. I stressed the whole time and for good reason, lol. The one and only time we did not call Grandma and remind her to give Miss K her medications Grandma forgot to do so and Miss K was over 3 hours off of her medication schedule. We learned our lesson, just because Grandma gets exasperated with us for calling to remind her and every time without fail has already given the medications does not mean that she will not forget eventually ;o). But other than that slight mistake, that Grandma learned from big time because she then had to stay awake until midnight to give Miss K her bedtime dose and neither of them were too happy about it lol, Miss K and her grandparents and Big Brother did great :o). No SVT episodes, we're actually past the 1 month mark since the last episode :o). I feel the Digoxin is actually working better than the Amiodarone was and I am happy we made the decision to try it out :o).
I called the Cardiologist yesterday and made Miss K's 6 month follow up appointment. It feels like it's been ages since we last saw her EP Cardiologist! I'm loving the long stretch between appointments, it makes me feel like things are going to go to a more normal pace for us now without having to see the Cardiologist every 2 months :o).
Thus far our new little guy is 100% healthy and fine :o). And Miss K absolutely loves him. She is constantly giving him hugs and kisses and asking where the baby is when she can't seem to find him herself. Big Brother also loves the new baby, he is excited to have a new playmate and keeps telling us he can't wait for Little D to be big enough to play with toys with him.
I had to be brave this past week and leave Miss K and Big Brother with Grandma and Grandpa while we welcomed our new little one. I stressed the whole time and for good reason, lol. The one and only time we did not call Grandma and remind her to give Miss K her medications Grandma forgot to do so and Miss K was over 3 hours off of her medication schedule. We learned our lesson, just because Grandma gets exasperated with us for calling to remind her and every time without fail has already given the medications does not mean that she will not forget eventually ;o). But other than that slight mistake, that Grandma learned from big time because she then had to stay awake until midnight to give Miss K her bedtime dose and neither of them were too happy about it lol, Miss K and her grandparents and Big Brother did great :o). No SVT episodes, we're actually past the 1 month mark since the last episode :o). I feel the Digoxin is actually working better than the Amiodarone was and I am happy we made the decision to try it out :o).
I called the Cardiologist yesterday and made Miss K's 6 month follow up appointment. It feels like it's been ages since we last saw her EP Cardiologist! I'm loving the long stretch between appointments, it makes me feel like things are going to go to a more normal pace for us now without having to see the Cardiologist every 2 months :o).
1.12.2013
Interesting...
I recently got a bit curious about a certain possible side effect of either Propanolol or Digoxin in children. Miss K is such a very tiny little girl, she has only gained 2 pounds in 10 months and is a bit on the short side. I haven't been too bothered by this until recently since she was 15 months and weighed roughly 18 pounds and now, 3 months later, she is still sitting around 18 pounds I realized she was around that same weight at 12 months as well. Seems a bit off to me. Neither of her doctors have mentioned any concern about weight though. So I tried looking up any possibilities of stunted growth while on either or both Propanolol and Digoxin. I came up with nothing so far. But I have asked other SVT momma's if they've noticed lack of growth in their children who are on these same medications, I'm waiting on answers and it may take a while. But while researching tonight I came across something interesting that I have not found before. I was on www.kidshealth.org reading about Propanolol when I came across this note:
Limit your child's use of caffeine and chocolate. Use with this drug (Propanolol) may cause nervousness, shakiness, and a fast heartbeat. **click here**
Well! No wonder Miss K has episodes of SVT when she eats chocolate! We have always just attributed it to the PJRT itself but never thought about it being because of one of her medications! So mixing chocolate (or caffeine) with Propanolol can cause a fast heart rate. That's just great, as if chocolate and caffeine naturally causing fast heart rate on it's own isn't enough we now have to worry about the medication aiding in this fast heart rate from chocolate lol.
So for those of you who read this and have a child using Propanolol be aware! And for those of you who read this who are family or friends of ours please remember this and don't give Miss K chocolate or caffeine without asking us first!
Limit your child's use of caffeine and chocolate. Use with this drug (Propanolol) may cause nervousness, shakiness, and a fast heartbeat. **click here**
Well! No wonder Miss K has episodes of SVT when she eats chocolate! We have always just attributed it to the PJRT itself but never thought about it being because of one of her medications! So mixing chocolate (or caffeine) with Propanolol can cause a fast heart rate. That's just great, as if chocolate and caffeine naturally causing fast heart rate on it's own isn't enough we now have to worry about the medication aiding in this fast heart rate from chocolate lol.
So for those of you who read this and have a child using Propanolol be aware! And for those of you who read this who are family or friends of ours please remember this and don't give Miss K chocolate or caffeine without asking us first!
12.19.2012
Daddy has Influenza :o(
It's been a long 3 days for this Momma! I.am.exhausted. All I can do at this point is pray I can stay healthy through this!
Big Brother got a bad cold over the weekend, he never fevered but had a very bad, though inconsistent, cough and bad congestion and runny nose. Sadly this cold resulted in a possible ear infection, I took him into the Pediatrician just to be sure he didn't have something really nasty that Miss K might get when we found his ear was starting to show signs of infection :o(. On the good side it did get Big Brother on Amoxacillin, as much as I hate medicating my children for any reason I really don't wish to have one suffering during Christmas or worse end up in Urgent/After Hours care away from home. Putting Big Brother on Amoxacillin now, even though he doesn't have an infection yet, will help us through the holidays. Usually the Pediatrician would have had me watch him close for a week and schedule a follow up for next week to make sure the ear did not turn into an infected sight but our Pediatrician is all awesomeness and insisted he did not want us in Urgent care with an ear infection on Christmas :o).
Worse...Daddy came home feeling quite sick Monday evening. He spent the night with severe chills that literally shook our bed all night long, and he coughed all night long and vomited and complained of muscle aches, a headache, and a sore throat. Tuesday he was up and gone before any of us got up, he had to take a 2 hour trip to see a job sight. I hoped this meant he would be just fine but I was beyond wrong. He came home from the trip hours before quitting time and curled up on the couch to die. I sent him to the after hours clinic to see what he had, we have to keep Miss K healthy if we can! The Dr. there told him it was definitely Viral and she was quite positive it is Influenza, even though all of us got the Flu shot back in October :o(. So the Dr. took a nose culture and sent it in to be tested promising to call him this morning and let him know what the results were. He spent all Tuesday afternoon, evening and night on the couch with chills and a fever and commenced with the coughing, nose blowing, congestion, and vomiting...and added Diarrhea to the symptoms. It's amazing how one virus can cause every symptom in the book to happen all at once! This morning found Daddy still on the couch, way too sick to go in to work. We never heard from the Dr. all day about his test results so this evening Daddy called the clinic and asked, they told him they'd call back in a bit...we waited 2 hours and called again to finally hear that he does indeed have Influenza :o(. And the Dr. that saw him was not on call tonight so he couldn't talk to her, she promised to prescribe Tamaflu for the rest of us in the house to protect us from his virus but because she wasn't in the clinic tonight we have to wait until morning to get that taken care of. I have no confidence this will happen so if we haven't heard back from her by 9:00am I will be calling my Obstetrician and asking him if he can prescribe Tamaflu for me and then I will also be calling our Pediatrician in hopes of him being able to prescribe it for both kids, to heck with the after hours clinic Dr.!
Miss K woke up running a high fever of 101 this morning :o(. She was miserable all day long with a constant fever that I have not been able to keep below 99.9. She also has congestion, though not as bad as Big Brother or Daddy yet, and her nose is running like a faucet, she has a cough as well. We can see in her eyes that she does not feel well at all. And my poor baby girl slept all day long today, I think she was awake maybe 4 hours total today. I felt so bad when we couldn't let her fall asleep when she wanted to for bedtime, she had to stay awake until we were in the clear to give her her Propanolol and Digoxin, poor baby kept trying to fall asleep sitting up in the middle of the floor :o(. On the good side I was able to get 1/2 a container of Pedialyte in her today, and a tiny bit of water and some milk :o). And she IS eating, she ate every meal today, even porked out on dinner like she was half starved. Hopefully she wakes up feeling better in the morning, and hopefully I can get tons of liquids in her tomorrow as well. Another plus is that she has not had SVT today :o), praying with everything I have that she doesn't have any tomorrow or the next day either! Daddy took the prayers one step further and called our Home Teachers and asked if they could come give Miss K a Priesthood blessing. They came late tonight and gave her a wonderful blessing :o), also made Daddy feel so bad that he is too sick to do this for her himself :o(.
I have made no less than 4 trips to the grocery store in 2 days. Every time I think we have everything we need to take care of everyone we find I am wrong and I am sent out once again...tonight Daddy needed Pepto Bismal badly, and we could have used another bottle of Ibuprophine for Miss K but I have had enough of the store for a bit and refused to leave the house yet again. Daddy will suffer, but he'll live I am sure and we have just enough Ibuprophine to make it through tomorrow morning so I don't feel bad.
I have been spraying Lysol on every surface for 3 days now, including any pillows and the couch every time Daddy touches them. I literally mean every surface has been sprayed multiple times. I also have had hand sanitizer sitting on the dining table all week, I use it every time I touch one of the sickies or something they have touched. I also require Daddy and Big Brother use it every time they touch anywhere on their face and after they use the restroom and, of course, after they touch Miss K and anything she has touched. I have become the sanitizer Natzi! But I refuse to get this illness, I am 32 weeks pregnant and I have a household to run, there is no way I can afford getting as sick as they have all been. It's just too bad I couldn't stop the kids from sharing their toys and germs, poor Miss K still ended up getting sick even with everything I have done :o(.
I think after all this is said and done I will need a vacation...alone. "I need", "I want", "I don't feel good", "I hurt"...all phrases I have heard constantly for 3 days now from 2 kids AND a husband. It get's tiring real fast. Not to mention the lack of sleep I have to endure through it all and no time to sit down and take care of myself for a minute. I may end up getting sick just because I'm being ran to my whits end!
Big Brother got a bad cold over the weekend, he never fevered but had a very bad, though inconsistent, cough and bad congestion and runny nose. Sadly this cold resulted in a possible ear infection, I took him into the Pediatrician just to be sure he didn't have something really nasty that Miss K might get when we found his ear was starting to show signs of infection :o(. On the good side it did get Big Brother on Amoxacillin, as much as I hate medicating my children for any reason I really don't wish to have one suffering during Christmas or worse end up in Urgent/After Hours care away from home. Putting Big Brother on Amoxacillin now, even though he doesn't have an infection yet, will help us through the holidays. Usually the Pediatrician would have had me watch him close for a week and schedule a follow up for next week to make sure the ear did not turn into an infected sight but our Pediatrician is all awesomeness and insisted he did not want us in Urgent care with an ear infection on Christmas :o).
Worse...Daddy came home feeling quite sick Monday evening. He spent the night with severe chills that literally shook our bed all night long, and he coughed all night long and vomited and complained of muscle aches, a headache, and a sore throat. Tuesday he was up and gone before any of us got up, he had to take a 2 hour trip to see a job sight. I hoped this meant he would be just fine but I was beyond wrong. He came home from the trip hours before quitting time and curled up on the couch to die. I sent him to the after hours clinic to see what he had, we have to keep Miss K healthy if we can! The Dr. there told him it was definitely Viral and she was quite positive it is Influenza, even though all of us got the Flu shot back in October :o(. So the Dr. took a nose culture and sent it in to be tested promising to call him this morning and let him know what the results were. He spent all Tuesday afternoon, evening and night on the couch with chills and a fever and commenced with the coughing, nose blowing, congestion, and vomiting...and added Diarrhea to the symptoms. It's amazing how one virus can cause every symptom in the book to happen all at once! This morning found Daddy still on the couch, way too sick to go in to work. We never heard from the Dr. all day about his test results so this evening Daddy called the clinic and asked, they told him they'd call back in a bit...we waited 2 hours and called again to finally hear that he does indeed have Influenza :o(. And the Dr. that saw him was not on call tonight so he couldn't talk to her, she promised to prescribe Tamaflu for the rest of us in the house to protect us from his virus but because she wasn't in the clinic tonight we have to wait until morning to get that taken care of. I have no confidence this will happen so if we haven't heard back from her by 9:00am I will be calling my Obstetrician and asking him if he can prescribe Tamaflu for me and then I will also be calling our Pediatrician in hopes of him being able to prescribe it for both kids, to heck with the after hours clinic Dr.!
Miss K woke up running a high fever of 101 this morning :o(. She was miserable all day long with a constant fever that I have not been able to keep below 99.9. She also has congestion, though not as bad as Big Brother or Daddy yet, and her nose is running like a faucet, she has a cough as well. We can see in her eyes that she does not feel well at all. And my poor baby girl slept all day long today, I think she was awake maybe 4 hours total today. I felt so bad when we couldn't let her fall asleep when she wanted to for bedtime, she had to stay awake until we were in the clear to give her her Propanolol and Digoxin, poor baby kept trying to fall asleep sitting up in the middle of the floor :o(. On the good side I was able to get 1/2 a container of Pedialyte in her today, and a tiny bit of water and some milk :o). And she IS eating, she ate every meal today, even porked out on dinner like she was half starved. Hopefully she wakes up feeling better in the morning, and hopefully I can get tons of liquids in her tomorrow as well. Another plus is that she has not had SVT today :o), praying with everything I have that she doesn't have any tomorrow or the next day either! Daddy took the prayers one step further and called our Home Teachers and asked if they could come give Miss K a Priesthood blessing. They came late tonight and gave her a wonderful blessing :o), also made Daddy feel so bad that he is too sick to do this for her himself :o(.
I have made no less than 4 trips to the grocery store in 2 days. Every time I think we have everything we need to take care of everyone we find I am wrong and I am sent out once again...tonight Daddy needed Pepto Bismal badly, and we could have used another bottle of Ibuprophine for Miss K but I have had enough of the store for a bit and refused to leave the house yet again. Daddy will suffer, but he'll live I am sure and we have just enough Ibuprophine to make it through tomorrow morning so I don't feel bad.
I have been spraying Lysol on every surface for 3 days now, including any pillows and the couch every time Daddy touches them. I literally mean every surface has been sprayed multiple times. I also have had hand sanitizer sitting on the dining table all week, I use it every time I touch one of the sickies or something they have touched. I also require Daddy and Big Brother use it every time they touch anywhere on their face and after they use the restroom and, of course, after they touch Miss K and anything she has touched. I have become the sanitizer Natzi! But I refuse to get this illness, I am 32 weeks pregnant and I have a household to run, there is no way I can afford getting as sick as they have all been. It's just too bad I couldn't stop the kids from sharing their toys and germs, poor Miss K still ended up getting sick even with everything I have done :o(.
I think after all this is said and done I will need a vacation...alone. "I need", "I want", "I don't feel good", "I hurt"...all phrases I have heard constantly for 3 days now from 2 kids AND a husband. It get's tiring real fast. Not to mention the lack of sleep I have to endure through it all and no time to sit down and take care of myself for a minute. I may end up getting sick just because I'm being ran to my whits end!
12.17.2012
It's been quiet with Miss K :o)
We've been having a great past few weeks! I hope I don't jinx it, *knock on wood*!
I really feel the Digoxin is working :o).
With the baby coming in just 7 weeks we decided we needed a trial run with Grandma and Grandpa to prepare them and Miss K for the 3-4 day stay at their house after the birth of the baby. This very paranoid and nervous mama left her sweet baby girl in the hands of Grandma and Grandpa for a whole night this past weekend. I admit, I ended up worrying and missing the kids a lot less than I thought I would! The time with just Daddy and I was so quiet and badly needed. But I did call Grandma just before bedtime to remind her to give Miss K her Propanolol and Digoxin and then I called again first thing in the morning to make sure she got them again. That was my main concern was the medications being forgotten, of course I also worried a bit about an SVT episode but that worry wasn't too great since she's been doing so good lately. Turns out both kids did wonderful with my parents :o). We will have another sleep over in January for a second trial run, I'm hoping to have a Pulse Ox device by then, or at least by the time the baby comes, so that I won't worry so much.
Big Brother ended up getting sick this past weekend :o(. Our first illness since early spring, I can't believe we've made it this long staying healthy and strong! But now, just a week before Christmas, Big Brother is very congested, has a runny nose and a nasty inconsistent cough. So far he has only been a bit warm, not really getting a temperature high enough to be considered a fever thank heavens! I am working as hard as I can to keep Miss K from getting his cold. But I do feel confident that as long as the cold doesn't come with a fever Miss K will do fine with it heart wise. So now we wait and see, see if I can keep her healthy by some miracle, and see if Big Brother makes it through fever free, and then of course see if Miss K can make it through fever free if she does end up getting it.
Here's to hoping I won't be back posting anything negative for a long while yet!
Praying for a quiet and enjoyable Christmas for everyone :o).
I really feel the Digoxin is working :o).
With the baby coming in just 7 weeks we decided we needed a trial run with Grandma and Grandpa to prepare them and Miss K for the 3-4 day stay at their house after the birth of the baby. This very paranoid and nervous mama left her sweet baby girl in the hands of Grandma and Grandpa for a whole night this past weekend. I admit, I ended up worrying and missing the kids a lot less than I thought I would! The time with just Daddy and I was so quiet and badly needed. But I did call Grandma just before bedtime to remind her to give Miss K her Propanolol and Digoxin and then I called again first thing in the morning to make sure she got them again. That was my main concern was the medications being forgotten, of course I also worried a bit about an SVT episode but that worry wasn't too great since she's been doing so good lately. Turns out both kids did wonderful with my parents :o). We will have another sleep over in January for a second trial run, I'm hoping to have a Pulse Ox device by then, or at least by the time the baby comes, so that I won't worry so much.
Big Brother ended up getting sick this past weekend :o(. Our first illness since early spring, I can't believe we've made it this long staying healthy and strong! But now, just a week before Christmas, Big Brother is very congested, has a runny nose and a nasty inconsistent cough. So far he has only been a bit warm, not really getting a temperature high enough to be considered a fever thank heavens! I am working as hard as I can to keep Miss K from getting his cold. But I do feel confident that as long as the cold doesn't come with a fever Miss K will do fine with it heart wise. So now we wait and see, see if I can keep her healthy by some miracle, and see if Big Brother makes it through fever free, and then of course see if Miss K can make it through fever free if she does end up getting it.
Here's to hoping I won't be back posting anything negative for a long while yet!
Praying for a quiet and enjoyable Christmas for everyone :o).
11.30.2012
Newborn Heart Defect Screen Awareness Day
I had big plans to post something new about today all day long to get the word out there but with 2 busy kids this was put on the back burner lol. So, since we're already 1/2 way through the day I'll stick to just one post.
This is a quick video about Newborn Pulse Ox screening. If you or someone you know is expecting a baby please watch and share this! It could potentially save a little one's life. Pulse Ox screening is very simple, very non-invasive, and very quick. There is no reason NOT to do this for our babies.
I don't remember if I've mentioned here that we are expecting our third baby in February. Yes, quite a shock for us! Our little family of 4 is growing to 5 in just a few short months! I have done tons of research and after having 2 babies already I know what I want and what I expect at the birth of this third precious one. One thing is certain: I WILL BE ASKING...NO, DEMANDING...THE NEWBORN NURSERY PUT A PULSE OXIMETER ON THIS NEW LITTLE ONE WITHIN 24 HOURS OF BIRTH. I don't expect to deliver another heart baby, this one should be perfectly healthy and fine like it's big brother but you absolutely can never be positively sure about this. I am terrified of taking a new baby home without knowing that the Pulse Ox test is perfect.
Please watch this video :o), save a baby's life :o).
This is a quick video about Newborn Pulse Ox screening. If you or someone you know is expecting a baby please watch and share this! It could potentially save a little one's life. Pulse Ox screening is very simple, very non-invasive, and very quick. There is no reason NOT to do this for our babies.
I don't remember if I've mentioned here that we are expecting our third baby in February. Yes, quite a shock for us! Our little family of 4 is growing to 5 in just a few short months! I have done tons of research and after having 2 babies already I know what I want and what I expect at the birth of this third precious one. One thing is certain: I WILL BE ASKING...NO, DEMANDING...THE NEWBORN NURSERY PUT A PULSE OXIMETER ON THIS NEW LITTLE ONE WITHIN 24 HOURS OF BIRTH. I don't expect to deliver another heart baby, this one should be perfectly healthy and fine like it's big brother but you absolutely can never be positively sure about this. I am terrified of taking a new baby home without knowing that the Pulse Ox test is perfect.
Please watch this video :o), save a baby's life :o).
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