4.17.2012

Home 4-17-12 Miss K is 8 Months Old

Today was Miss K's 8 month Cardiology check-up.  I've been looking forward to this day for weeks, sometimes it feels like there is just WAY too much time between visits.

Miss K is now weighing 16.4 pounds and is 27 1/4 inches long.

Her weight has caught up with her Propanolol dose finally.  Her Cardiologist says she is now on a dose that would be considered the "starter dose" for her weight if we were just beginning the Propanolol for the first time, which means we have a lot of room to grow before we can no longer up her dose as needed.  If she has any future SVT episodes we will be upping the Propanolol before upping the Amiodarone.

He was concerned that she's still having periodic breakthrough SVT episodes, she obviously hasn't outgrown the PJRT since we're still seeing them, of course we knew this already.  He was happy to hear that she was barely in SVT before we caught it and got her out of it on our own.

He is not taking her off the Amiodarone as of now.  He's for sure leaving her on it for 2 more months, he said that if she has absolutely NO breakthrough episodes between now and then that he'd be willing to try taking her off the Amiodarone but he warned me that if she did have any SVT episodes after taking her off of it that they may be long and that we may not be able to get her out of them on our own.  He wants us to be prepared to be making ER visits with her if we take her off the Amiodarone before she's really ready.  He is still wanting to keep her on the Amiodarone until her 1st birthday.  He mentioned upping the dose since she's been on the same dose for over 5 months now but I talked him out of it since she's only having 1 or 2 episodes every 3 months.  He was happy to keep everything as it is, if we keep the Amiodarone at 6 ML and she makes it to her 1st birthday then he explained it would be easier to take her off of it because there would be less in her system to work out, we could know within weeks if she needs to go back on it instead of 1-2 months like normal.  I'm confident we won't be changing the dose of this medication any time in the near future if at all.

Her heart sounds great, the EKG went very well and her blood pressure is great.  Overall the Cardiologist was impressed with how happy and alert she is, all she did was smile for him the whole time.

And some of the best news we received from the Cardiologist is that I do not need to give Miss K the Propanolol every 8 hours any more, he felt bad that he didn't mention this at her 6 month check-up, she just needs to get it 3 times a day and if we need to go longer than 8 hours that is totally fine.  The Propanolol works best when spread out evenly in 8 hour increments but it's not a big deal to get off the schedule.  I am so relieved!  Putting Miss K to bed after we give it to her at 10:00pm and then waking her up (as well as myself) at 6:00am to give it to her again has really been wearing on both of us.  Miss K absolutely hates getting up at 6:00am, usually she only wakes up just enough to take the Propanolol and eat a little then she goes back to sleep for almost 2 more hours.  And she is always ready for bed around 9:00pm and therefore cranky and hard to please for that extra hour.  I'm so happy to be able to let her set the schedule now!  The Cardiologist's exact words "Oh heavens, please let her sleep!  She should be allowed to wake up on her own when she's ready, she can wait to take the Propanolol until then!", he's such a wonderful Pediatric Cardiologist :o).  Of course we'll still try to stick to giving it to her as close to 8 hours as possible to keep her from having SVT episodes but letting her sleep as long as she needs to at night will be heavenly.

We had lab work done to check her Thyroid and Lungs, just keeping a close watch to make sure she doesn't have any Amiodarone Side Effects.  I haven't heard back from her Cardiologist yet, we may get the results tomorrow if not this evening, I'll update this post when I find out!  (We got a call from Miss K's wonderful Cardiologist around 6pm, everything looks GREAT!  I love that he calls us as soon as the results come to him, no matter the time and no matter what he's doing)  Getting the lab work done was torture on our sweet baby girl.  The technician tried her right arm first but couldn't get the vain, and rather than stop after the first try she kept trying and trying...and trying until it had been over 5 minutes on that same arm, Miss K screamed the whole time with great big crocodile tears rolling down her cheeks.  I admit, I cried too, my tears were almost as big as hers.  I felt awful holding her down like that :o(.  The technician finally tried the left arm and found that the vein there was much better than the other arm, but Miss K didn't get to calm down much before I had to hold her down again and let the girl poke her yet again.  We had instant screaming and tears all over again, a lot more hysteric the second time around but she got the vein and the blood within a minute and we were done.  Miss K continued to cry crocodile tears for over 10 minutes after leaving the Lab :o(.  Her poor Daddy could hear her screaming from the waiting room through 3 doors :o(, he admitted after the first 2 minutes he was about to jump over the desk and come rescue his baby doll, he's such a sweet and wonderful Daddy.

 Miss K showing off her 2 BandAid covered Owies :o(.  I'm sad to say she is getting some scaring on both arms in these locations :o(.

Miss K is doing awesome, she's growing like a weed and changing way too fast.  She's adorably funny, cute as a bug and the clown of the house.  She brings a smile to any and every face whether it be family or a stranger in a grocery store, nobody can look at her without smiling.  Currently her most favorite person in the world is her big brother, she lights up like a fire cracker whenever he walks into the room, luckily he loves her just as much :o).  She is the biggest Momma's girl ever, nobody can take care of her like her Mommy, or so she thinks.

9 comments:

  1. I was looking for SVT info and came across your blog. I too have a baby with SVT, infact we were one of the 7 infants hospitalized at primary's the same time as your girl! We too live in Utah and my baby was found too be in SVT at my 37 week checkup. We were lifeflighed to the university where She was born on 8-17. We were there for awhile, making sure she tolerated her propranaol. The next day after we were sent home she had SVT attacks and blood in her stool. We were sent to primary's on 8-26 after being hospitalized in our local hospital. We too went through the no feeding, xrays etc. Later we found out the blood was a dairy allergy not from the SVT. We were there On the third floor for two days as they upped her medicine. She has since been going great, she goes to the cardiologist at primary's in a couple of weeks. It's was good to read your story, it was so similar to ours! And crazy that we were at primary's at the same time! I remember them telling us too that there had been 7 cases of SVT. I wish the best for your little girl!

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    1. I am so happy you found our blog! I've wondered how those other babies are doing now, I wish they could have hooked us parents up while we were all there, maybe start a support group or something, it would have helped me immensely! I'm happy to hear your baby girl is doing great! I felt bad for all the other families dealing with our same situation, we teased our baby girl and her Dr.'s about her being a trend setter, having been the first one admitted in SVT, I sure hope she doesn't keep setting these kinds of trends lol! I pray your daughter keeps doing well and grows healthy and strong!

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  2. I am so glad I found your blog! I totally agree with them hooking us parents up while we were out there, it would have helped me a ton! So was your baby ever in svt in utero at your checkups? With mine it was discovered at my 37 week checkup. They figure she had in throughout the pregnancy but at all of my other checkups her heart was in normal rythum. When I got to the university they had the heart monitors on me and she stayed in svt for about 10 hours. Then kept going in and out of svt before she was born. I was so scared because at that point I didn't know
    what exactly was wrong with her heart. Also just curious when your daughter had blood in her stools did they ever figure the cause for it? Was it from the svt? I hated the fact that my daughter had so many abdominal x rays done! I think she ended up having around 8 to 10 x rays, how many did your girl have? Thanks for letting me share my story!

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    1. We did not catch Miss K's SVT until the day we delivered her. She was fine as far as we knew until I went in because my water broke, I had my first obvious contraction just after they admitted me and hooked me up to the fetal monitor and such, as soon as the contraction was over Miss K got the hiccups and then instantly went into SVT, that was the very first time we knew about it. They delivered her emergency c-section within 20 minutes of the SVT starting. They thought it was caused by an infection in utero so they treated her with an antibiotic for 3 days in NICU and when she never had another episode since that first one just before birth they released her to come home and told us it shouldn't happen again but they sent us home with a stethoscope and instructed us what to do if it did happen again. After PCMC admitted us and evaluated the whole situation and her history they came to the conclusion that she had to of had it in utero we just never caught her in SVT at prenatal check-ups and ultrasounds.
      When Miss K had the blood in her stools they never found a reason why, it just cleared up on its own and she never had a problem again. We are certain it was not caused by the SVT or any food allergies though. They decided it was probably just a bad gas bubble or something small like that and that if we had been home we never would have known about it and she would have been fine, they were just extra cautious about it because of her SVT. I think she had about 8 belly x-rays, they just kept checking her every few hours to make sure an obstruction wasn't being missed.
      What is your daughter's official diagnosis? Is she taking heart medications for it?
      Thank YOU for sharing your story!

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  4. My little girl's diagnosis is SVT. I am not sure what type, I think it is the more common form of SVT. I know it is not WPW, they did not see this form on her EKG's. The cardiologist said her SVT has been a little more stubborn to treat, she was having episodes while on medication. She is on propranolol 3 times a day 2 ml. After she initially went on the propranolol, she had more episodes so that had to keep upping her dose. So she went on a "super dose". At one point they were thinking about putting her on flecincide if the high propranolol dose didn't work. Thankfully it worked! At her last cardiology appt (she was 6 months) they did not up her dose. They are now letting her outgrow her dose. She is now on a dose just a little under what it should be for her weight. We go back in a couple of weeks. I asked the cardiologist if they would take her off it when we go back and he said he really likes them on it for 1 yr but just maybe I can twist his arm to let her off it! I really think he will have her stay on it for the full year. I want her to be off of it but I am also scared for another episode and going through what we went through when she was a newborn. When she had one episode her body didn't handle it too well, so it scares me for her to have another one! It isint fun giving her the medication 3x a day, but has been easier not having to be do strict about the 8 hours! What dose of propranolol is your daughter on? Have they started letting her outgrow it?

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    1. Miss K is on 2ML 3 times a day as well, I'm SO glad we don't have to stick to the 8 hour dosing any more it was so hard on her when all she wanted to do was sleep at night, she loves to get 10-12 hours at night. Her PJRT is almost as stubborn as WPW, I guess it comes in a close second, she still has episodes while on her medications. We had her on a "Super dose" of both the Propanolol and Amiodarone from the beginning until she was about 4 months, both were such high doses they were more than double what she should have been on for her weight but even taking that much she was still having frequent SVT episodes. Now at almost 9 months her weight has caught up and she's now on the "starter dose" of Propanolol for what she weighs, she's still on a higher dose of Amiodarone than she should be on but is quickly growing into it. Her Cardiologist is confident she'll be on the Propanolol until she's at least 3 years old he's not even going to try letting her outgrow it until she's gone at least 6 months straight with absolutely no SVT episodes, we're hoping to have her off the Amiodarone by her 1st birthday though, and currently we're planning on letting her outgrow the dose she's on rather than up it if she has more episodes, we'll try upping the Propanolol first and hope that works. It's like a 1 in a million chance that Miss K will outgrow her PJRT, her Cardiologist is already planning ablation surgery in 4 or 5 years.

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  5. I just wanted to say hi and how happy I am to have found your blog, I have a little boy who is 9 months old and has re entrant SVT that was diagnosed at birth also. Thankfully I gave birth naturally but he was rushed off within an hour and it was the worst moment of my life, I can't quite believe someone has been through such a similar experience. He is now on 7.5mls of propanolol three times a day and 0.7mls of digoxin. It has been a long 9 months but he is growing beautifully, he is the happiest little man in the world, and just adores his older sister. We have had at least 3 breakthroughs that have had us in the ER and they were even worse than spending the first 6 months of his life in hospital. Only on the last one has the adosine(sp) worked and that was using a dose they would start at with an adult!! As his cardiologist put it he has a very tricky SVT. I just wanted to ask what kind of things you do to try and bring your daughter out of the SVT? I'm very happy to see she is doing so well, and she is a beautiful little girl

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    1. I'm happy you found our blog as well! I'm sorry to hear how stubborn your baby boys breakthrough episodes are, that has got to be tough. I hate the Adenosine, it scares me to death! I'm always terrified that we'll end up in the ER with Miss K when she has episodes! When we discover Miss K is in SVT we first try blowing in her face to make her catch her breath, the trick is to blow gently but with a lot of air and to keep blowing without a break until she's held her breath for at least 5 seconds, sometimes it works like a charm and others it's a bust. When blowing in her face doesn't work we try tipping her upside down for about 10-15 seconds, usually she goes a bit red in the face and this is a good sign that her blood pressure is changing and we can bring her back upright. If neither one of those work we have tried spraying her in the face with a spray bottle and water and have seen results once or twice (this makes her gasp and hold her breath for a second or two). Our last ditch effort is a baggie full of frozen peas(we hate this one), we place it on her forehead for 5 seconds, sometimes this works like a charm but if it doesn't then we try again placing the bag over her forehead, eyes and nose for about 3 seconds. Usually the last one works when all the others have failed, we give each technique a try 3-5 times before moving on to the next one. We have not had to take Miss K to the ER since her very first visit back in August thank heavens! We've been extremely lucky that one of the above methods have worked each time. Thank you for sharing, I really hope things keep getting better and better for your little guy!

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