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).
Showing posts with label Physical Maneuvers. Show all posts
Showing posts with label Physical Maneuvers. Show all posts
3.06.2013
10.28.2012
Breakthrough SVT Log...
I have a feeling there's going to be a lot more SVT in the near future. Rather than post and re-post about each and every one of them I'm just going to add them here as they happen, no worries I'll date them :o), this IS a journal for me as much as an update for all of you so keeping track is very important to me.
Friday, October 26:
Miss K had another SVT episode :o(. We have not missed any Propanolol doses and she has been getting the new dose of 3.2 mL 3 times a day for a little more than a week. The SVT was, yet again, unexplained :o(. We're not sure how long she was in it before I caught it, she had been spending the afternoon/evening with Daddy while I worked my day at the boutique. Daddy doesn't know how to tell when Miss K is in SVT and he never catches it on his own. I don't know how to explain how I know she's in SVT, she doesn't show any real physical signs that are for sure "I'm in SVT" signs. She just seems off to me, a bit out of sorts. And she is normally crying for no apparent reason, just wining and moping around carrying her blanket. She also does this when she just plain doesn't feel well but somehow my "mommy instincts" can pick out whether she is in SVT or not when acting like this. When I got home I could hear Miss K crying in her room while getting a diaper change, Daddy came out with her completely baffled and told me she was refusing to eat her dinner and that her diaper was clean and dry, he didn't know what was wrong. I took her from him and just knew to check her heart. She was in SVT and she actually sat still long enough for me to count it out, it was over 200 BPM. Luckily the physical maneuver that makes her bear down worked on the first try and then she was fine, tired but fine. This is turning into a once a week occurrence lately :o(.
Sunday, November 4:
Miss K had another SVT episode IN CHURCH! And this time I was paying attention and figured something out...temper tantrums can cause SVT! She was being insistent on playing with a Crayola marker but she only wanted to play with it, not color and she kept pulling the lid off and drawing on her pretty little dress so I took it away. She tried to throw a huge tantrum and got so worked up it just threw her into SVT. I knew she was in it when she went from near tantrum screaming to painful crying :o(. I carried her out into the Mother's room and checked to make sure I was correct in my thinking she was in SVT, once confirmed I did the "bear down" physical maneuver, it took 2 tries this time :o( I hope that's not a sign that it may stop working in the future :o(. She was fine the rest of church, other than being extremely tired because of the time change, in her mind it was nap time but we still had an hour left of meetings so she really gave us a hard time. Looking back on the last SVT in church episode I realized that it was the same situation as today when she went into SVT, she was upset over having something taken away and started to throw a huge tantrum when her screaming turned to cries of pain.
Friday, November 16:
Miss K has been taking 1.2 mL Digoxin twice a day with 3.2 mL Propanolol 3 times a day for 4 days now. Her EP Cardiologist told us if there was going to be any change in the frequency and duration of her SVT episodes we would notice within 3 days or so, a week at most. I don't think I'm going to call in tonight's SVT episode though. Miss K started running a low fever last night and woke up this morning with no change, it stayed around 99 degrees Fahrenheit all morning but this afternoon it went up to just over 100 :o(. Miss K is well known for having SVT with high fevers so I am attributing tonight's episode to that. She cried "that cry" as she went into it and then she was just fussy and a bit whiny, she wasn't doing anything to cause the SVT, it just happened out of nowhere. We let her stay in it for about 15-20 minutes before making her bear down to stop the SVT. Daddy got to try it this time without my help or instruction and was very pleased he was able to get her out of the SVT without me :o). I really hope this episode was truly caused by her fever. I know she shouldn't be having any at all, fever or not, but how can we think a high fever isn't going to cause SVT with a PJRT child when everyone's heart rate is quite a bit faster than normal when they are fevering? We're still on the lookout for more episodes though, we check her constantly throughout the day. I'm happy to say we made it over 2 weeks without SVT this time and with her running a fever it just makes it more believable that the new medication "cocktail" may actually be working.
Saturday, November 17:
I'm sitting at the Boutique, where I put in occasional shifts, when my phone rings...it's Daddy calling to tell me Miss K is running a fever again, about 102 degrees Fahrenheit :o(. We have no idea why she's running a fever these past two days, why is it kids do this on the weekends when they can't see their doctor? So anyway, he then continues to tell me that she went down for nap just after 1:00pm and he went in to get her up at 4:00pm, she didn't want to get up and was trying to go back to sleep so he checked her heart to find she was in SVT :o(. He doesn't know if she went into it before, during or waking up from her nap so we have no idea how long she was in SVT before he made her bear down to break the episode :o(. This makes me nervous. I'm still sure it's the fever causing the SVT, we DID have 3 episodes in one day the last time she had a fever so 1 episode every day that she's fevering isn't much of a surprise to me. But now I'm trying to remain calm as I try to decide if I need to call the EP Cardiologist on Monday and let him know what's going on. I know he'll want to know that she's having SVT but I don't know if he'll consider these episodes something to worry about or not since she's running a high fever. I just wish we knew WHY she's running a fever, teeth are always an option but I don't think that's very likely right now as she's already gotten all 4 new molars, I think she's done with teeth for at least a few months. Here's to praying I'm not back on here any time soon to report more :o(. Keep praying with us that we can keep her out of the hospital!
Thursday, November 22:
Yes, Thanksgiving day :o(. Actually it was in the evening. We were at my parents for the holiday. Miss K decided to throw a temper tantrum for her Grandma and it caused SVT. It was good timing in a sense, but also bad seeing as it's been less than 5 days since her last episode. So Grandma got to put her ear to Miss K's chest and hear what SVT sounds like in her, the first time in over a year since Grandma or Grandpa has heard her heart beating too fast. I also got to show Grandma and Grandpa how to help Miss K bear down and break the SVT episode. The next time I speak to the EP Cardiologist I'll ask him what he thinks about her temper tantrums causing SVT. It's not all the time, just certain tantrums she throws when she's extremely ticked off about something, this doesn't happen very often, actually so far it's only happened in church and now at Grandma's lol.
Tuesday, November 27:
Another one :o(. And we have no idea why. We also have no idea when she went into it. I have had a very busy and distracted day, one of those days where the kids do whatever they want and make a huge mess of the house and I don't even notice, as long as they are playing and happy and not bothering me or hurting anything. So sometime this morning during the chaos of the kids happily terrorizing the house and me being distracted with my work Miss K went into SVT. Daddy came home for lunch around 12:30, he wasn't home long when Miss K started wining and begging to be held, but still wining even while being held. We thought she was just hungry since she hadn't eaten much for breakfast and it had been 3 hours since then but when I'd ask her if she wanted to eat she'd just wine some more instead of signing "eat" like she usually does. I put my ear to her chest and heard the quick beats of SVT :o(. She came out of it instantly with the "bear down" physical maneuver. I'm concerned since it's only been 5 days since her last episode, they seem to be happening more and more frequently. Her EP cardiologist wasn't concerned the last time we spoke but I feel he just might be concerned if I called again...I'm not sure if we should wait a bit longer or if we should see if she just needs a dosing adjustment. I'll keep everyone updated on what we end up deciding. Until then hopefully I won't be back on this thread posting another episode anytime soon :o(.
Saturday, December 22:
We very nearly made it 1 month episode free! But this illness Miss K has ruined it for us. She did so well for the first 3 days but suddenly couldn't handle it any longer. This morning she had another SVT episode, her fever is pretty low, low enough to be nearly non-existent. Yesterday she started pulling on her ears and crying, I hoped it was not an ear infection, I was way too sick to really pay much attention to her behavior through the day and didn't get her in to see the Pediatrician :o(. This morning with the SVT episode and the tugging on her ears combined I decided she needed to be seen, ear infections tend to cause SVT with her as easily as a fever does. So as of right now Daddy has Miss K over at the After Hours Clinic getting her checked out. I hate that I am too sick to take her myself. I had to write a note listing everything Daddy needs to mention to the Doctor while there so that he doesn't forget anything important and so that she can be treated correctly for her situation. I only hope it all goes well! One of my biggest worries is that her heart rate is most likely a lot higher than they are used to seeing in a child her age so I told Daddy over and over as he went out the door that he needed to tell them that as long as her heart rate is below 200 BPM she is fine and does not need the Emergency Room, I hope they listen to him! I will update on what the Doctor says when Daddy and Miss K get back...
*Update: Daddy and Miss K came back with a prescription for Amoxicillin for Miss K. Her ears were quite a bit red, not enough for them to normally treat immediately but with Christmas in a few days they are treating her so that we don't end up in the Emergency Room with her in lots of ear pain. The doctor also told Daddy that Miss K is quite dehydrated :o(. We were doing well getting her to drink but, having this flu myself I know, water doesn't taste all that great so she is refusing it. I got pedialyte but she only drank half the container and got tired of that taste, we offered her gatorade and she didn't like it :o(. So after going to the doctor and finding she is indeed dehydrated we broke out the apple juice, we're watering it down so she's getting at least some water in her. Knowing she's dehydrated enough for a doctor to make note of it lets us know that's why she had SVT this morning, dehydration can cause it as well. So now our drug cocktail is a very long list daily for the next 10 days! Propanolol 3x a day, Digoxin 2x a day, Tamaflu 2x a day, Amoxicillin 2x a day, and Tylenolol and Ibuprophine as needed as well as Little Remedies Honey Cough Elixer as needed. Poor kid is stuck taking medications all day long! Though after a long afternoon nap and having started the Amoxicillin as soon as she got home she seems to be on the mend already :o).
Friday, October 26:
Miss K had another SVT episode :o(. We have not missed any Propanolol doses and she has been getting the new dose of 3.2 mL 3 times a day for a little more than a week. The SVT was, yet again, unexplained :o(. We're not sure how long she was in it before I caught it, she had been spending the afternoon/evening with Daddy while I worked my day at the boutique. Daddy doesn't know how to tell when Miss K is in SVT and he never catches it on his own. I don't know how to explain how I know she's in SVT, she doesn't show any real physical signs that are for sure "I'm in SVT" signs. She just seems off to me, a bit out of sorts. And she is normally crying for no apparent reason, just wining and moping around carrying her blanket. She also does this when she just plain doesn't feel well but somehow my "mommy instincts" can pick out whether she is in SVT or not when acting like this. When I got home I could hear Miss K crying in her room while getting a diaper change, Daddy came out with her completely baffled and told me she was refusing to eat her dinner and that her diaper was clean and dry, he didn't know what was wrong. I took her from him and just knew to check her heart. She was in SVT and she actually sat still long enough for me to count it out, it was over 200 BPM. Luckily the physical maneuver that makes her bear down worked on the first try and then she was fine, tired but fine. This is turning into a once a week occurrence lately :o(.
Sunday, November 4:
Miss K had another SVT episode IN CHURCH! And this time I was paying attention and figured something out...temper tantrums can cause SVT! She was being insistent on playing with a Crayola marker but she only wanted to play with it, not color and she kept pulling the lid off and drawing on her pretty little dress so I took it away. She tried to throw a huge tantrum and got so worked up it just threw her into SVT. I knew she was in it when she went from near tantrum screaming to painful crying :o(. I carried her out into the Mother's room and checked to make sure I was correct in my thinking she was in SVT, once confirmed I did the "bear down" physical maneuver, it took 2 tries this time :o( I hope that's not a sign that it may stop working in the future :o(. She was fine the rest of church, other than being extremely tired because of the time change, in her mind it was nap time but we still had an hour left of meetings so she really gave us a hard time. Looking back on the last SVT in church episode I realized that it was the same situation as today when she went into SVT, she was upset over having something taken away and started to throw a huge tantrum when her screaming turned to cries of pain.
Friday, November 16:
Miss K has been taking 1.2 mL Digoxin twice a day with 3.2 mL Propanolol 3 times a day for 4 days now. Her EP Cardiologist told us if there was going to be any change in the frequency and duration of her SVT episodes we would notice within 3 days or so, a week at most. I don't think I'm going to call in tonight's SVT episode though. Miss K started running a low fever last night and woke up this morning with no change, it stayed around 99 degrees Fahrenheit all morning but this afternoon it went up to just over 100 :o(. Miss K is well known for having SVT with high fevers so I am attributing tonight's episode to that. She cried "that cry" as she went into it and then she was just fussy and a bit whiny, she wasn't doing anything to cause the SVT, it just happened out of nowhere. We let her stay in it for about 15-20 minutes before making her bear down to stop the SVT. Daddy got to try it this time without my help or instruction and was very pleased he was able to get her out of the SVT without me :o). I really hope this episode was truly caused by her fever. I know she shouldn't be having any at all, fever or not, but how can we think a high fever isn't going to cause SVT with a PJRT child when everyone's heart rate is quite a bit faster than normal when they are fevering? We're still on the lookout for more episodes though, we check her constantly throughout the day. I'm happy to say we made it over 2 weeks without SVT this time and with her running a fever it just makes it more believable that the new medication "cocktail" may actually be working.
Saturday, November 17:
I'm sitting at the Boutique, where I put in occasional shifts, when my phone rings...it's Daddy calling to tell me Miss K is running a fever again, about 102 degrees Fahrenheit :o(. We have no idea why she's running a fever these past two days, why is it kids do this on the weekends when they can't see their doctor? So anyway, he then continues to tell me that she went down for nap just after 1:00pm and he went in to get her up at 4:00pm, she didn't want to get up and was trying to go back to sleep so he checked her heart to find she was in SVT :o(. He doesn't know if she went into it before, during or waking up from her nap so we have no idea how long she was in SVT before he made her bear down to break the episode :o(. This makes me nervous. I'm still sure it's the fever causing the SVT, we DID have 3 episodes in one day the last time she had a fever so 1 episode every day that she's fevering isn't much of a surprise to me. But now I'm trying to remain calm as I try to decide if I need to call the EP Cardiologist on Monday and let him know what's going on. I know he'll want to know that she's having SVT but I don't know if he'll consider these episodes something to worry about or not since she's running a high fever. I just wish we knew WHY she's running a fever, teeth are always an option but I don't think that's very likely right now as she's already gotten all 4 new molars, I think she's done with teeth for at least a few months. Here's to praying I'm not back on here any time soon to report more :o(. Keep praying with us that we can keep her out of the hospital!
Thursday, November 22:
Yes, Thanksgiving day :o(. Actually it was in the evening. We were at my parents for the holiday. Miss K decided to throw a temper tantrum for her Grandma and it caused SVT. It was good timing in a sense, but also bad seeing as it's been less than 5 days since her last episode. So Grandma got to put her ear to Miss K's chest and hear what SVT sounds like in her, the first time in over a year since Grandma or Grandpa has heard her heart beating too fast. I also got to show Grandma and Grandpa how to help Miss K bear down and break the SVT episode. The next time I speak to the EP Cardiologist I'll ask him what he thinks about her temper tantrums causing SVT. It's not all the time, just certain tantrums she throws when she's extremely ticked off about something, this doesn't happen very often, actually so far it's only happened in church and now at Grandma's lol.
Tuesday, November 27:
Another one :o(. And we have no idea why. We also have no idea when she went into it. I have had a very busy and distracted day, one of those days where the kids do whatever they want and make a huge mess of the house and I don't even notice, as long as they are playing and happy and not bothering me or hurting anything. So sometime this morning during the chaos of the kids happily terrorizing the house and me being distracted with my work Miss K went into SVT. Daddy came home for lunch around 12:30, he wasn't home long when Miss K started wining and begging to be held, but still wining even while being held. We thought she was just hungry since she hadn't eaten much for breakfast and it had been 3 hours since then but when I'd ask her if she wanted to eat she'd just wine some more instead of signing "eat" like she usually does. I put my ear to her chest and heard the quick beats of SVT :o(. She came out of it instantly with the "bear down" physical maneuver. I'm concerned since it's only been 5 days since her last episode, they seem to be happening more and more frequently. Her EP cardiologist wasn't concerned the last time we spoke but I feel he just might be concerned if I called again...I'm not sure if we should wait a bit longer or if we should see if she just needs a dosing adjustment. I'll keep everyone updated on what we end up deciding. Until then hopefully I won't be back on this thread posting another episode anytime soon :o(.
Saturday, December 22:
We very nearly made it 1 month episode free! But this illness Miss K has ruined it for us. She did so well for the first 3 days but suddenly couldn't handle it any longer. This morning she had another SVT episode, her fever is pretty low, low enough to be nearly non-existent. Yesterday she started pulling on her ears and crying, I hoped it was not an ear infection, I was way too sick to really pay much attention to her behavior through the day and didn't get her in to see the Pediatrician :o(. This morning with the SVT episode and the tugging on her ears combined I decided she needed to be seen, ear infections tend to cause SVT with her as easily as a fever does. So as of right now Daddy has Miss K over at the After Hours Clinic getting her checked out. I hate that I am too sick to take her myself. I had to write a note listing everything Daddy needs to mention to the Doctor while there so that he doesn't forget anything important and so that she can be treated correctly for her situation. I only hope it all goes well! One of my biggest worries is that her heart rate is most likely a lot higher than they are used to seeing in a child her age so I told Daddy over and over as he went out the door that he needed to tell them that as long as her heart rate is below 200 BPM she is fine and does not need the Emergency Room, I hope they listen to him! I will update on what the Doctor says when Daddy and Miss K get back...
*Update: Daddy and Miss K came back with a prescription for Amoxicillin for Miss K. Her ears were quite a bit red, not enough for them to normally treat immediately but with Christmas in a few days they are treating her so that we don't end up in the Emergency Room with her in lots of ear pain. The doctor also told Daddy that Miss K is quite dehydrated :o(. We were doing well getting her to drink but, having this flu myself I know, water doesn't taste all that great so she is refusing it. I got pedialyte but she only drank half the container and got tired of that taste, we offered her gatorade and she didn't like it :o(. So after going to the doctor and finding she is indeed dehydrated we broke out the apple juice, we're watering it down so she's getting at least some water in her. Knowing she's dehydrated enough for a doctor to make note of it lets us know that's why she had SVT this morning, dehydration can cause it as well. So now our drug cocktail is a very long list daily for the next 10 days! Propanolol 3x a day, Digoxin 2x a day, Tamaflu 2x a day, Amoxicillin 2x a day, and Tylenolol and Ibuprophine as needed as well as Little Remedies Honey Cough Elixer as needed. Poor kid is stuck taking medications all day long! Though after a long afternoon nap and having started the Amoxicillin as soon as she got home she seems to be on the mend already :o).
10.23.2012
Starting to think...
the Amiodarone was doing a bit more good than bad for Miss K :o(.
We had yet another unexplained SVT episode last night. It's always terrifying to pick Miss K up and be able to feel her heart practically beating out of her chest, I really doubt I'll ever get over the terrified Mom part of this!
We waited it out hoping that maybe, just maybe this once she might come out of it on her own but we didn't get any such luck :o(. Her EP Cardiologist still does not want us letting her stay in it for more than 10-15 minutes at a time before breaking it using a Physical Maneuver. I dreaded using the Ice last night so I tried blowing in her face, then hanging her upside down, when neither of these worked I told Daddy to get the bag of peas out. But while Daddy was digging in the freezer I remembered another Maneuver the nurses had taught us, one I've never tried before because of Miss K's herniated umbilical, since that has healed I just forgot about this one. This maneuver forces the person to "bear down", like they're trying to have a bowel movement or, in the case of a pregnant woman, like they're pushing a baby out during labor and delivery. You gently tuck baby's knees in and then gently roll them up to their chest pushing gently, but firmly into their body. Miss K went red in the face and cried out and then I released her, waited a second and listened to her heart and she was just fine! I hope this one works the next time as well!
I'm getting nervous, Miss K is starting to have her breakthrough SVT more and more often and it's getting harder and harder to break :o(. Hopefully we can stick to the Propanolol. And hopefully we can make it 6 months before going back to the EP Cardiologist. After last night I'm not setting my hopes too high though, we may end up scheduling an appointment within the next month or so if she keeps having more and more episodes. And there is a possibility the EP Cardiologist might put her back on Amiodarone or he may suggest trying Flecainide, like we talked about a few months back.
We could sure use all the prayers we can get that Miss K will get out of this little "rut" and get back to being SVT free again, without help from more medications.
We had yet another unexplained SVT episode last night. It's always terrifying to pick Miss K up and be able to feel her heart practically beating out of her chest, I really doubt I'll ever get over the terrified Mom part of this!
We waited it out hoping that maybe, just maybe this once she might come out of it on her own but we didn't get any such luck :o(. Her EP Cardiologist still does not want us letting her stay in it for more than 10-15 minutes at a time before breaking it using a Physical Maneuver. I dreaded using the Ice last night so I tried blowing in her face, then hanging her upside down, when neither of these worked I told Daddy to get the bag of peas out. But while Daddy was digging in the freezer I remembered another Maneuver the nurses had taught us, one I've never tried before because of Miss K's herniated umbilical, since that has healed I just forgot about this one. This maneuver forces the person to "bear down", like they're trying to have a bowel movement or, in the case of a pregnant woman, like they're pushing a baby out during labor and delivery. You gently tuck baby's knees in and then gently roll them up to their chest pushing gently, but firmly into their body. Miss K went red in the face and cried out and then I released her, waited a second and listened to her heart and she was just fine! I hope this one works the next time as well!
I'm getting nervous, Miss K is starting to have her breakthrough SVT more and more often and it's getting harder and harder to break :o(. Hopefully we can stick to the Propanolol. And hopefully we can make it 6 months before going back to the EP Cardiologist. After last night I'm not setting my hopes too high though, we may end up scheduling an appointment within the next month or so if she keeps having more and more episodes. And there is a possibility the EP Cardiologist might put her back on Amiodarone or he may suggest trying Flecainide, like we talked about a few months back.
We could sure use all the prayers we can get that Miss K will get out of this little "rut" and get back to being SVT free again, without help from more medications.
10.16.2012
Miss K is 14 Months...
We had Miss K's 14 month Cardiology check up today. It went great!
Her EP Cardiologist was concerned about her latest episodes. Knowing Miss K was experiencing high fevers and missed 2 consecutive doses of Propanolol at the time she had 3 SVT episodes in one day made him feel a bit better, it's always good when we have a reasonable explanation as to WHY she was in SVT. But the other two breakthrough SVT episodes she experienced, the one about a month ago and then Sunday's "fun" experience concerned him a bit. He also isn't happy with the fact that nothing except the ice treatment is breaking the SVT, and that she has not ever converted back to normal rhythm on her own. His first statement was "I don't want to put her back on the Amiodarone", to which I of course replied "NO! We don't even want to think about that." Upon discussion we decided Miss K really is just showing us that the Amiodarone is officially out of her system (click here)and that she has outgrown the dose of Propanolol she is currently on. She has gained 2 pounds since the last dose adjustment so that makes perfect sense to all of us.
Miss K is now taking 3.2 ML Propanolol 3 times a day (up from 2.8 ML 3 times daily). So much for hoping to get her down to twice a day instead :o(. But the good news is the EP Cardiologist does not wish to see her again for 6 months, the longest stretch we have ever taken between visits! This is a good sign :o), not to mention good for our budget lol. Any concerns we may have in the next 6 months, or any new breakthrough episodes we feel need to be addressed can and will be done over the phone with him, as well as any dose adjustments.
My favorite part about this visit...the EP Cardiologists reaction when he first walked into the exam room :o). Miss K was standing in the middle of the room with some toys and his eyes got big and a bit teary and he said "Oh my, is this really (Miss K)? She has grown up so much! She is getting big way too fast. How old is she now?" I told him she's 14 months, he replied "No way! I just want to keep her little, I keep thinking of her as 9 or 10 months old, is she walking?!" He was amazed when I told him she is indeed walking...and talking...and growing up way too fast. He kept repeating that she was growing and changing way too fast for him and how sad it is that we can't just keep them tiny forever, he kept reminiscing about his first visits with her and how tiny and adorable she was, and of course he never failed to mention how adorable she still is ;o). It's wonderful to have a Doctor who cares this much about his patients.
So much for our plans to take Miss K off the Propanolol in 6 months or so...Today the Cardiologist made it sound as though she may be on it for at least another year :o(. This PJRT is really kicking Miss K's behind, They call it "persistent or Permanent" with good reason.
Her EP Cardiologist was concerned about her latest episodes. Knowing Miss K was experiencing high fevers and missed 2 consecutive doses of Propanolol at the time she had 3 SVT episodes in one day made him feel a bit better, it's always good when we have a reasonable explanation as to WHY she was in SVT. But the other two breakthrough SVT episodes she experienced, the one about a month ago and then Sunday's "fun" experience concerned him a bit. He also isn't happy with the fact that nothing except the ice treatment is breaking the SVT, and that she has not ever converted back to normal rhythm on her own. His first statement was "I don't want to put her back on the Amiodarone", to which I of course replied "NO! We don't even want to think about that." Upon discussion we decided Miss K really is just showing us that the Amiodarone is officially out of her system (click here)and that she has outgrown the dose of Propanolol she is currently on. She has gained 2 pounds since the last dose adjustment so that makes perfect sense to all of us.
Miss K is now taking 3.2 ML Propanolol 3 times a day (up from 2.8 ML 3 times daily). So much for hoping to get her down to twice a day instead :o(. But the good news is the EP Cardiologist does not wish to see her again for 6 months, the longest stretch we have ever taken between visits! This is a good sign :o), not to mention good for our budget lol. Any concerns we may have in the next 6 months, or any new breakthrough episodes we feel need to be addressed can and will be done over the phone with him, as well as any dose adjustments.
My favorite part about this visit...the EP Cardiologists reaction when he first walked into the exam room :o). Miss K was standing in the middle of the room with some toys and his eyes got big and a bit teary and he said "Oh my, is this really (Miss K)? She has grown up so much! She is getting big way too fast. How old is she now?" I told him she's 14 months, he replied "No way! I just want to keep her little, I keep thinking of her as 9 or 10 months old, is she walking?!" He was amazed when I told him she is indeed walking...and talking...and growing up way too fast. He kept repeating that she was growing and changing way too fast for him and how sad it is that we can't just keep them tiny forever, he kept reminiscing about his first visits with her and how tiny and adorable she was, and of course he never failed to mention how adorable she still is ;o). It's wonderful to have a Doctor who cares this much about his patients.
So much for our plans to take Miss K off the Propanolol in 6 months or so...Today the Cardiologist made it sound as though she may be on it for at least another year :o(. This PJRT is really kicking Miss K's behind, They call it "persistent or Permanent" with good reason.
10.15.2012
Breakthrough SVT...
...in Church! Yesterday was not a very good day for us.
It's no fun dealing with SVT away from home but dealing with it away from home and in church is even less fun! We weren't even in our own church ward (at home), we were visiting family for a baby blessing therefore attending church in Daddy's sisters ward, 2 hours from home.
The episode started about 10 minutes into the meeting, we have no idea what set it off all we know is when it started because she started screaming frantically for no apparent reason and I had to take her out into the hallway where she was pretty much inconsolable. We decided to wait it out and see if she could convert on her own, seeing as we didn't have any ice bags to treat her (See Physical Maneuvers) and Daddy did try to blow in her face and then tried tipping her upside down out in the hall during the meeting and neither of these methods worked. She was in SVT through the whole hour long meeting and not liking it, all her vitals stayed perfect but she cried and cried from pain :o(.
When the meeting was over we all headed over to Daddy's sisters house for a luncheon. Daddy and I gave Miss K her afternoon dose of Propanolol in hopes that it might help break the SVT. We waited 15 minutes, as long as we dared, but she was still in SVT. So I broke down and asked my sister in law for a frozen bag of peas. Daddy and I took Miss K into a quiet room away from everyone and sat down to do the ice treatment. Miss K did pretty OK with it this time, it's so tough doing this to a baby that's old enough to get her feelings hurt over us doing something so mean :o(, she cries huge crocodile tears and is hard to calm afterwards :o(. But it did break the SVT and she was great the rest of the afternoon.
I'm so glad she sees her EP Cardiologist tomorrow! I have a huge feeling these past episodes have been a sign that the Amiodarone is truly out of her system now (click here), not a bad thing at all just that her body is now in a place where it needs to get used to working with just the Propanolol. I think we may end up adjusting her Propanolol dose tomorrow to accommodate for the lack of Amiodarone as well as a bit of weight gain since her last dose adjustment.
I'll update again tomorrow! Keep us in your prayers, we're hoping her EP Cardiologist doesn't think she needs to be on something new, or worse, back to the Amiodarone.
It's no fun dealing with SVT away from home but dealing with it away from home and in church is even less fun! We weren't even in our own church ward (at home), we were visiting family for a baby blessing therefore attending church in Daddy's sisters ward, 2 hours from home.
The episode started about 10 minutes into the meeting, we have no idea what set it off all we know is when it started because she started screaming frantically for no apparent reason and I had to take her out into the hallway where she was pretty much inconsolable. We decided to wait it out and see if she could convert on her own, seeing as we didn't have any ice bags to treat her (See Physical Maneuvers) and Daddy did try to blow in her face and then tried tipping her upside down out in the hall during the meeting and neither of these methods worked. She was in SVT through the whole hour long meeting and not liking it, all her vitals stayed perfect but she cried and cried from pain :o(.
When the meeting was over we all headed over to Daddy's sisters house for a luncheon. Daddy and I gave Miss K her afternoon dose of Propanolol in hopes that it might help break the SVT. We waited 15 minutes, as long as we dared, but she was still in SVT. So I broke down and asked my sister in law for a frozen bag of peas. Daddy and I took Miss K into a quiet room away from everyone and sat down to do the ice treatment. Miss K did pretty OK with it this time, it's so tough doing this to a baby that's old enough to get her feelings hurt over us doing something so mean :o(, she cries huge crocodile tears and is hard to calm afterwards :o(. But it did break the SVT and she was great the rest of the afternoon.
I'm so glad she sees her EP Cardiologist tomorrow! I have a huge feeling these past episodes have been a sign that the Amiodarone is truly out of her system now (click here), not a bad thing at all just that her body is now in a place where it needs to get used to working with just the Propanolol. I think we may end up adjusting her Propanolol dose tomorrow to accommodate for the lack of Amiodarone as well as a bit of weight gain since her last dose adjustment.
I'll update again tomorrow! Keep us in your prayers, we're hoping her EP Cardiologist doesn't think she needs to be on something new, or worse, back to the Amiodarone.
9.26.2012
SVT
What a bad week we have been having :o(, I hope it gets better after this "hump day" rather than staying the same or, I pray not, worse!
Sunday night Daddy couldn't find the syringe we usually use to give Miss K her Propanolol so he pulled a "new" one from the cupboard. He failed to check and make sure it wasn't plugged though. Propanolol is crazy weird, when left spilled on something or left in an unused syringe for days it will harden like hard candy and it takes boiling water and lots of patience to get it out. The syringe Daddy happened to choose was one of the old ones we hadn't used in a while that did not get rinsed out therefore it was plugged...and he didn't notice. So Sunday night he thought he gave Miss K her Propanolol but instead he gave her absolutely nothing, the syringe did not fill even though it looked like it did since Propanolol is clear as water. That's 1 skipped dose. Then Monday morning I gave her Propanolol in the same syringe, not knowing it was a different one than what we had been using before therefore I also did not check it. That's 2 skipped doses in one 24 hour period, back to back. Her afternoon dose was when I figured it out, I "filled" the syringe and gave it to her...but realized she never swallowed, she just smacked her lips and gave me a funny look like "what was that supposed to be Mom?" so at this point I inspected the syringe I was using and figured out what had happened. I got a new, clean syringe out and gave her a real dose of Propanolol and then prayed she would do OK without the other two doses.
Monday I also realized Miss K did not feel well and was acting like she had an ear infection so I got her in to see her Pediatrician. She showed all the classic signs through the whole appointment but when examined she had no redness or inflamation, not in her ears or her throat. Her Pediatrician did notice that her back gums are swollen and she for sure has molars coming in, he attributed her symptoms to this and gave her a clean bill of health. He even said her heart sounded perfect.
Monday night Miss K spent the night playing in her crib, literally all night. No crying just sweet talking and playing.
Tuesday morning Miss K woke up with a fever, the first fever she has ever had. It was at 101 F. I gave her Ibuprophine and the fever came down pretty quickly but she spent the day miserable and crying. She even fell asleep in the middle of the front room floor while playing, something she normally would NEVER do. She took an hour nap but woke up with the fever all over again. Her heart rate stayed at a steady 150-160 throughout the day while she was awake and active, and while sleeping it was in the 130's. Her normal active heart rate is 100-110 and her normal resting heart rate is between 80-90. I gave her Tylenol to help with the returned fever and called PCMC. At this point it was after hours so I had to have the on call Pediatric Cardiologist paged. I asked him about the high heart rate and told him her symptoms all day, he assured me she was fine and that it was just high because of the fever and possibly dehydration. It made me feel somewhat better hearing this and I felt comfortable putting her to bed last night with another dose of Ibuprophine knowing that she should be OK.
Again Miss K spent the night playing in her crib off and on, she didn't sleep much at all.
This morning she woke up with a lower fever of about 99 F. I held off giving her anything for it so that it could burn off whatever illness she may be fighting. But around 11:00am she started to get fussy again and just wanted to be held. I picked her up for the dozenth time that morning to find that her heart felt like it was beating out of her chest. I check her to find that she was in SVT :o(. It took me almost 5 minutes to get her out of it. Then I gave her some Ibuprophine for the fever and whatever pain she was obviously in. An hour later, after constant tears and miserable crying, I found that she was in SVT yet again. This time she was upset and the only thing she thought could make her happy was sleep but I couldn't let her sleep until I knew she was out of SVT. I tried our usual Physical Maneuvers with no success. After 10 minutes of trying Daddy came home for lunch and suggested we give in and try the icebag treatment. I hate this one. But I gave in and pulled out the frozen peas, poured some into a ziplock baggie and we sat on the floor together with Miss K. Daddy held her in his arms and I placed the bag on her head, I decided to try the nicer version and just put the bag on her forehead and the bridge of her nose rather than the recommended suffocation version. We got lucky and it did work, on the first try. It really upset her though and had her crying so hard she had the hiccups :o(.
After all that stress was over I rocked her to sleep and put her down for a very early nap, where she is right now. I've been checking on her constantly and at this moment I know for a fact that her heart rate is in the 120's.
The 2 missed doses were very bad timing. Miss K has a hard time being sick and it never fails when she doesn't feel well she has SVT episodes. We just had to top it off with a high fever, something that makes every person (healthy or not) have a higher heart rate than normal. Poor baby :o(.
**Added Note:
Miss K had 1 more SVT episode before the end of the day. 3 in one day...Wow. This last episode required the ice treatment again. It was tough since Miss K knew what was coming and started to fight it immediately, she cried and was heartbroken that we would do such a mean thing again :o(. But it did work. Miss K ended the day with a much better active heart rate of about 120.
Sunday night Daddy couldn't find the syringe we usually use to give Miss K her Propanolol so he pulled a "new" one from the cupboard. He failed to check and make sure it wasn't plugged though. Propanolol is crazy weird, when left spilled on something or left in an unused syringe for days it will harden like hard candy and it takes boiling water and lots of patience to get it out. The syringe Daddy happened to choose was one of the old ones we hadn't used in a while that did not get rinsed out therefore it was plugged...and he didn't notice. So Sunday night he thought he gave Miss K her Propanolol but instead he gave her absolutely nothing, the syringe did not fill even though it looked like it did since Propanolol is clear as water. That's 1 skipped dose. Then Monday morning I gave her Propanolol in the same syringe, not knowing it was a different one than what we had been using before therefore I also did not check it. That's 2 skipped doses in one 24 hour period, back to back. Her afternoon dose was when I figured it out, I "filled" the syringe and gave it to her...but realized she never swallowed, she just smacked her lips and gave me a funny look like "what was that supposed to be Mom?" so at this point I inspected the syringe I was using and figured out what had happened. I got a new, clean syringe out and gave her a real dose of Propanolol and then prayed she would do OK without the other two doses.
Monday I also realized Miss K did not feel well and was acting like she had an ear infection so I got her in to see her Pediatrician. She showed all the classic signs through the whole appointment but when examined she had no redness or inflamation, not in her ears or her throat. Her Pediatrician did notice that her back gums are swollen and she for sure has molars coming in, he attributed her symptoms to this and gave her a clean bill of health. He even said her heart sounded perfect.
Monday night Miss K spent the night playing in her crib, literally all night. No crying just sweet talking and playing.
Tuesday morning Miss K woke up with a fever, the first fever she has ever had. It was at 101 F. I gave her Ibuprophine and the fever came down pretty quickly but she spent the day miserable and crying. She even fell asleep in the middle of the front room floor while playing, something she normally would NEVER do. She took an hour nap but woke up with the fever all over again. Her heart rate stayed at a steady 150-160 throughout the day while she was awake and active, and while sleeping it was in the 130's. Her normal active heart rate is 100-110 and her normal resting heart rate is between 80-90. I gave her Tylenol to help with the returned fever and called PCMC. At this point it was after hours so I had to have the on call Pediatric Cardiologist paged. I asked him about the high heart rate and told him her symptoms all day, he assured me she was fine and that it was just high because of the fever and possibly dehydration. It made me feel somewhat better hearing this and I felt comfortable putting her to bed last night with another dose of Ibuprophine knowing that she should be OK.
Again Miss K spent the night playing in her crib off and on, she didn't sleep much at all.
This morning she woke up with a lower fever of about 99 F. I held off giving her anything for it so that it could burn off whatever illness she may be fighting. But around 11:00am she started to get fussy again and just wanted to be held. I picked her up for the dozenth time that morning to find that her heart felt like it was beating out of her chest. I check her to find that she was in SVT :o(. It took me almost 5 minutes to get her out of it. Then I gave her some Ibuprophine for the fever and whatever pain she was obviously in. An hour later, after constant tears and miserable crying, I found that she was in SVT yet again. This time she was upset and the only thing she thought could make her happy was sleep but I couldn't let her sleep until I knew she was out of SVT. I tried our usual Physical Maneuvers with no success. After 10 minutes of trying Daddy came home for lunch and suggested we give in and try the icebag treatment. I hate this one. But I gave in and pulled out the frozen peas, poured some into a ziplock baggie and we sat on the floor together with Miss K. Daddy held her in his arms and I placed the bag on her head, I decided to try the nicer version and just put the bag on her forehead and the bridge of her nose rather than the recommended suffocation version. We got lucky and it did work, on the first try. It really upset her though and had her crying so hard she had the hiccups :o(.
After all that stress was over I rocked her to sleep and put her down for a very early nap, where she is right now. I've been checking on her constantly and at this moment I know for a fact that her heart rate is in the 120's.
The 2 missed doses were very bad timing. Miss K has a hard time being sick and it never fails when she doesn't feel well she has SVT episodes. We just had to top it off with a high fever, something that makes every person (healthy or not) have a higher heart rate than normal. Poor baby :o(.
**Added Note:
Miss K had 1 more SVT episode before the end of the day. 3 in one day...Wow. This last episode required the ice treatment again. It was tough since Miss K knew what was coming and started to fight it immediately, she cried and was heartbroken that we would do such a mean thing again :o(. But it did work. Miss K ended the day with a much better active heart rate of about 120.
9.18.2012
It Seems I Spoke too Soon :o(.
Miss K had a breakthrough SVT episode this morning :o(. Her first one in 3 months :o(. Since January she's been quite good at having an episode once every 3 months, I should have been prepared for it instead of surprised this time.
Since last Thursday (9-13-12) we have been dealing with allergies, poor Miss K is miserable and can hardly breath through the congestion :o(. She was VERY congested last year starting a few days after coming home from PCMC, around this same time. We hoped, along with her Pediatrician, that it was not fall allergies but instead a reaction to being out in the open with all the dust and pollen that she was not used to due to being hospitalized for so long in a VERY sterile environment. No such luck. Our first adventure into an open area packed full of pollen and fall changes and Miss K woke up the next morning unable to breath and sneezing every 5 minutes.
So today the SVT could have been caused by any number of things. I seriously doubt it is due to the Amiodarone being fully out of her system though and I doubt she will ever be put back on it again for any reason. I also don't think she'll need her Propanolol dose adjusted, she hasn't gained hardly a few ounces since the last adjustment, but we'll see what she does in the next month before she goes back to see the EP Cardiologist. When she had her episode she a) was having a moment of extreme congestion and was being forced to breath from her mouth constantly, b) had just tripped over a toy and hurt herself causing one of those "fun" crying so hard she forgets to breath moments, and c) had just gained the hiccups from the crying, and not normal hiccups but the painful kind that sound like the poor kid is belching a huge bubble between hiccuping.
I could feel her heart with my hand, it felt fine that way though maybe a tiny bit fast. So I checked with the stethoscope to find that she was indeed in SVT, though I'm not sure if it was True SVT (True SVT is a heart rate over 210 BPM) or if she was just beating a little too fast for her normal heart rate as I didn't take the time to count it out but it surely didn't sound fast enough to be at 210+ BPM. I cradled her and blew in her face, the little stinker smiled and giggled through the Physical Maneuver lol and I was sure it wasn't going to work but she surprised me, when I listened with the stethoscope again she was beating at her normal heart rate. It took a mere 5 seconds from finding her in SVT to getting her out of it. I wish I was brave enough to wait it out and see if she could come out of it on her own, but I'm just not. I still fear she is still more likely to get stuck in it the longer she's allowed to keep that rate and that I'll end up taking her to the ER for help getting her out of it so I jump on the Physical Maneuvers as soon as I know she's in SVT and don't give her little heart a chance to try converting on it's own :o(.
I am disappointed, even though I shouldn't be surprised and should never have gotten my hopes up. I was looking forward to trying to take her off of the Propanolol, or at least bringing her down to 2 doses a day instead of 3, within the next 4-6 months but reality has hit today and I'm realizing this is most likely not a possibility for at least another 12 months if not longer :o(. Giving her the Propanolol really isn't the real issue...the real issue is that the longer she has to have the Propanolol and is actually having breakthrough SVT, no matter how often, the more likely it is that she will be getting a Catheter Ablation in the near future and that actually scares me to death. I know some will say I shouldn't worry and that their child or other children they know have had one and did great but I also know what I have been told by the EP Cardiologist and what I have read about Ablations, they are not invasive therefore not as dangerous as say Open Heart Surgery is but they are still dangerous in that the surgeon could cauterize the wrong area or could miss and hit a vital part of the heart causing serious damage. It terrifies me.
1 more month until Miss K's EP Cardiology appointment and hopefully you won't be hearing from us again until then, at least not bad news anyway ;o). Here's to hoping!
Since last Thursday (9-13-12) we have been dealing with allergies, poor Miss K is miserable and can hardly breath through the congestion :o(. She was VERY congested last year starting a few days after coming home from PCMC, around this same time. We hoped, along with her Pediatrician, that it was not fall allergies but instead a reaction to being out in the open with all the dust and pollen that she was not used to due to being hospitalized for so long in a VERY sterile environment. No such luck. Our first adventure into an open area packed full of pollen and fall changes and Miss K woke up the next morning unable to breath and sneezing every 5 minutes.
So today the SVT could have been caused by any number of things. I seriously doubt it is due to the Amiodarone being fully out of her system though and I doubt she will ever be put back on it again for any reason. I also don't think she'll need her Propanolol dose adjusted, she hasn't gained hardly a few ounces since the last adjustment, but we'll see what she does in the next month before she goes back to see the EP Cardiologist. When she had her episode she a) was having a moment of extreme congestion and was being forced to breath from her mouth constantly, b) had just tripped over a toy and hurt herself causing one of those "fun" crying so hard she forgets to breath moments, and c) had just gained the hiccups from the crying, and not normal hiccups but the painful kind that sound like the poor kid is belching a huge bubble between hiccuping.
I could feel her heart with my hand, it felt fine that way though maybe a tiny bit fast. So I checked with the stethoscope to find that she was indeed in SVT, though I'm not sure if it was True SVT (True SVT is a heart rate over 210 BPM) or if she was just beating a little too fast for her normal heart rate as I didn't take the time to count it out but it surely didn't sound fast enough to be at 210+ BPM. I cradled her and blew in her face, the little stinker smiled and giggled through the Physical Maneuver lol and I was sure it wasn't going to work but she surprised me, when I listened with the stethoscope again she was beating at her normal heart rate. It took a mere 5 seconds from finding her in SVT to getting her out of it. I wish I was brave enough to wait it out and see if she could come out of it on her own, but I'm just not. I still fear she is still more likely to get stuck in it the longer she's allowed to keep that rate and that I'll end up taking her to the ER for help getting her out of it so I jump on the Physical Maneuvers as soon as I know she's in SVT and don't give her little heart a chance to try converting on it's own :o(.
I am disappointed, even though I shouldn't be surprised and should never have gotten my hopes up. I was looking forward to trying to take her off of the Propanolol, or at least bringing her down to 2 doses a day instead of 3, within the next 4-6 months but reality has hit today and I'm realizing this is most likely not a possibility for at least another 12 months if not longer :o(. Giving her the Propanolol really isn't the real issue...the real issue is that the longer she has to have the Propanolol and is actually having breakthrough SVT, no matter how often, the more likely it is that she will be getting a Catheter Ablation in the near future and that actually scares me to death. I know some will say I shouldn't worry and that their child or other children they know have had one and did great but I also know what I have been told by the EP Cardiologist and what I have read about Ablations, they are not invasive therefore not as dangerous as say Open Heart Surgery is but they are still dangerous in that the surgeon could cauterize the wrong area or could miss and hit a vital part of the heart causing serious damage. It terrifies me.
1 more month until Miss K's EP Cardiology appointment and hopefully you won't be hearing from us again until then, at least not bad news anyway ;o). Here's to hoping!
6.21.2012
Teething Pain...
And SVT :o(. This post was meant to come out on Monday (6-18-12) but things have been crazy around here so writing it up is as far as I got lol.
I swear every time we go through teething Miss K has more episodes, she has such a hard time dealing with severe pain and I'm now finding that pain causes her heart rate to go up and if the pain is bad enough it causes SVT :o(. Tonight we took the kids out to the pool to swim for a bit before bedtime and while we were out I could feel Miss K's heart beating quite fast so I closed my eyes and placed my hand over her heart and sat and "listened" with my hand, it was obvious she was in SVT :o( so I had to tip her back (yes right there in the pool lol!) and blow in her face, it only took one try and she was out of SVT (see Physical Maneuvers). Apparently she wasn't in it very long (she has a history of being harder to get out of SVT the longer she's in it) and apparently it wasn't a very bad episode as she didn't act much different than her usual self. But still it was an episode :o(.
I guess we need to prepare ourselves to deal with at least 1 (quite often 2) SVT episode each month from here on out, because that's what she's been averaging since January. Hopefully the older she gets the less we'll see, with any luck we may get to a point where we'll only see breakthrough SVT when she needs a medication adjustment instead of just randomly without explanation, or in today's case because of some type of discomfort or pain.
Other than teething pain Miss K has been doing wonderfully since our last update :o). She is finally deciding to crawl, mostly, and loves being able to get around easier than she could rolling. She is also quite feisty and full of mischief. When anyone does something she doesn't like she shakes her hands at them, gives a dirty little look, and yells "uh!" it really is quite cute though we hope she doesn't keep the attitude past this cute baby stage ;o). When eating she is known for pushing our hands and the spoon away from her face and yelling "no!" when she's not up for another bite, another cute attitude from her that we hope doesn't stick. She's also an adorable flirt and can get any stranger to look her way and comment on how cute that baby is. She has her Daddy, Big Brother, Grandpa and one of our good buddy's wrapped around her little finger very tightly, all four of them would do just about anything for her.
I swear every time we go through teething Miss K has more episodes, she has such a hard time dealing with severe pain and I'm now finding that pain causes her heart rate to go up and if the pain is bad enough it causes SVT :o(. Tonight we took the kids out to the pool to swim for a bit before bedtime and while we were out I could feel Miss K's heart beating quite fast so I closed my eyes and placed my hand over her heart and sat and "listened" with my hand, it was obvious she was in SVT :o( so I had to tip her back (yes right there in the pool lol!) and blow in her face, it only took one try and she was out of SVT (see Physical Maneuvers). Apparently she wasn't in it very long (she has a history of being harder to get out of SVT the longer she's in it) and apparently it wasn't a very bad episode as she didn't act much different than her usual self. But still it was an episode :o(.
I guess we need to prepare ourselves to deal with at least 1 (quite often 2) SVT episode each month from here on out, because that's what she's been averaging since January. Hopefully the older she gets the less we'll see, with any luck we may get to a point where we'll only see breakthrough SVT when she needs a medication adjustment instead of just randomly without explanation, or in today's case because of some type of discomfort or pain.
Other than teething pain Miss K has been doing wonderfully since our last update :o). She is finally deciding to crawl, mostly, and loves being able to get around easier than she could rolling. She is also quite feisty and full of mischief. When anyone does something she doesn't like she shakes her hands at them, gives a dirty little look, and yells "uh!" it really is quite cute though we hope she doesn't keep the attitude past this cute baby stage ;o). When eating she is known for pushing our hands and the spoon away from her face and yelling "no!" when she's not up for another bite, another cute attitude from her that we hope doesn't stick. She's also an adorable flirt and can get any stranger to look her way and comment on how cute that baby is. She has her Daddy, Big Brother, Grandpa and one of our good buddy's wrapped around her little finger very tightly, all four of them would do just about anything for her.
5.29.2012
Breakthrough SVT...again...and again.
Now the tally is 4 episodes...that's right 4! I didn't post about the last one because it seemed insignificant to me at the time, it was last week either Wednesday or Thursday, I can't remember which. She was in and out of SVT so fast I didn't really have even a second to panic. I had just checked her heart rate for the night and it was perfectly fine. I gave her her evening Propanolol, she choked on it a bit, I checked her heart rate again, it was rapidly beating around 240 BPM or so, I blew in her face, checked her heart again, and she was back to a steady 107 or so. It was that fast. But now I'm adding it in our "Breakthrough Tally."
Last night she had her 4th episode in 2 weeks :o(. That's more than she's had in such a short period of time since she was first released from the hospital. I had worried about her all evening since about 5:30 when she fell asleep in my dad's arms at a family party, one second she was awake and giving everyone snuggles and the next second she was just out cold, no amount of jiggling and talking could wake her. We put her in the car seat to head for home. I checked her heart rate just in case, since it's not normal for her to fall asleep in anyone but Mommy's arms and especially not so easily or so soundly. She was fine, beating slow and steady. We got home around 7:30pm. We let the kids relax and be happy outside for a bit then we started bedtime routine. Miss K was a little restless through her feeding, etc. but I attributed it to a messy diaper. After her bath I checked her heart rate, I was quite surprised to hear it racing I really didn't expect it. I had to blow in her face 3 times before it slowed. The whole time Daddy was saying "Are you sure she's in SVT? There's just no way you're right. Look at her, she's fine! How can she be in SVT looking so good and smiling and giggling at us?" Yup, that's Miss K for you! She doesn't show signs she's in it, other than seeming to be a little more restless and wiggly than normal, which she was last night but like I said she also had a messy diaper and those drive her absolutely nuts. We have no idea what put her in SVT, it was quite obviously a sporadic spike in her heart rate without a cause and like I mentioned in my last post about an episode those are the worse breakthrough episodes.
I'm still sure the missed Propanolol dose on Mother's Day was the cause of the first 2 episodes she had. Now I'm also pretty sure she wouldn't have had so much of an issue without that dose if she was on a high enough dose. I think she's due for another dosage adjustment. She has her 10 month Cardiology check up a week from today so I'm not going to call them, the last time I called so close to an appointment they advised us to stick to our appointment date and they had her EP Cardiologist adjust the Propanolol dose over the phone. We mine as well wait it out this time, I don't feel it's worth panicking over when we can get her out of the SVT at home on our own and when she's acting so normal when she's in it.
All these months we've stayed consistently hopeful that she would grow out of her PJRT. We kept telling ourselves "she's only ___ months old it can still happen we have plenty of time" but now that she's 2 months shy of 1 year old we're not so confident. Her EP Cardiologist warned us in the beginning that if she didn't out grow it by 1 year then she wasn't going to outgrow it. She's proving to us that her little heart is going to be extremely stubborn and refuse to work correctly without medication and future surgery :o(.
Last night she had her 4th episode in 2 weeks :o(. That's more than she's had in such a short period of time since she was first released from the hospital. I had worried about her all evening since about 5:30 when she fell asleep in my dad's arms at a family party, one second she was awake and giving everyone snuggles and the next second she was just out cold, no amount of jiggling and talking could wake her. We put her in the car seat to head for home. I checked her heart rate just in case, since it's not normal for her to fall asleep in anyone but Mommy's arms and especially not so easily or so soundly. She was fine, beating slow and steady. We got home around 7:30pm. We let the kids relax and be happy outside for a bit then we started bedtime routine. Miss K was a little restless through her feeding, etc. but I attributed it to a messy diaper. After her bath I checked her heart rate, I was quite surprised to hear it racing I really didn't expect it. I had to blow in her face 3 times before it slowed. The whole time Daddy was saying "Are you sure she's in SVT? There's just no way you're right. Look at her, she's fine! How can she be in SVT looking so good and smiling and giggling at us?" Yup, that's Miss K for you! She doesn't show signs she's in it, other than seeming to be a little more restless and wiggly than normal, which she was last night but like I said she also had a messy diaper and those drive her absolutely nuts. We have no idea what put her in SVT, it was quite obviously a sporadic spike in her heart rate without a cause and like I mentioned in my last post about an episode those are the worse breakthrough episodes.
I'm still sure the missed Propanolol dose on Mother's Day was the cause of the first 2 episodes she had. Now I'm also pretty sure she wouldn't have had so much of an issue without that dose if she was on a high enough dose. I think she's due for another dosage adjustment. She has her 10 month Cardiology check up a week from today so I'm not going to call them, the last time I called so close to an appointment they advised us to stick to our appointment date and they had her EP Cardiologist adjust the Propanolol dose over the phone. We mine as well wait it out this time, I don't feel it's worth panicking over when we can get her out of the SVT at home on our own and when she's acting so normal when she's in it.
All these months we've stayed consistently hopeful that she would grow out of her PJRT. We kept telling ourselves "she's only ___ months old it can still happen we have plenty of time" but now that she's 2 months shy of 1 year old we're not so confident. Her EP Cardiologist warned us in the beginning that if she didn't out grow it by 1 year then she wasn't going to outgrow it. She's proving to us that her little heart is going to be extremely stubborn and refuse to work correctly without medication and future surgery :o(.
5.17.2012
2 Breakthrough Episodes in 2 Days?!?
Last night Miss K had another SVT Episode. We have absolutely NO idea why, nothing happened to set it off :o(. Sporadic episodes are WAY worse than episodes brought on by something. It's not good when we can't explain why she's in SVT.
How did I know to check on her heart last night? She was acting kind of out of sorts, still wiggly and very active and happy but a little clingy and acting restless. I picked her up and put my ear to her chest and just knew. We tried to count the beats with a stethoscope but it's nearly impossible to keep count with a wiggly baby. Just like last time I'm guessing her heart was buzzing at about 20 beats per every 5 seconds, calculating to about 240 BPM.
It only took a second to get Miss K out of SVT this time, the first physical maneuver I tried was blowing in her face and it only took one time. When we checked her heart again it was beating slow and steady again.
I'm torn, I don't know if I should call her EP Cardiologist or not. Two episodes in two days isn't a good thing, especially with this last one being unexplainable. I can't decide because we know exactly why she went into SVT earlier this week, and we did accidentally skip a Propanolol dose on Sunday so I feel it's mainly based on the missing dose. I don't know if it takes a little while for the body to get back on track after missing a dose or if these episodes may be a sign that we need another medication adjustment...So do I call today and let the EP Cardiologist know? Or do I wait and see if she has anymore unexplained SVT?
It's times like this that it sucks going through this for the first time ever, sometimes I just wish I had experience with it already and always knew exactly what to do and when/how to do it.
How did I know to check on her heart last night? She was acting kind of out of sorts, still wiggly and very active and happy but a little clingy and acting restless. I picked her up and put my ear to her chest and just knew. We tried to count the beats with a stethoscope but it's nearly impossible to keep count with a wiggly baby. Just like last time I'm guessing her heart was buzzing at about 20 beats per every 5 seconds, calculating to about 240 BPM.
It only took a second to get Miss K out of SVT this time, the first physical maneuver I tried was blowing in her face and it only took one time. When we checked her heart again it was beating slow and steady again.
I'm torn, I don't know if I should call her EP Cardiologist or not. Two episodes in two days isn't a good thing, especially with this last one being unexplainable. I can't decide because we know exactly why she went into SVT earlier this week, and we did accidentally skip a Propanolol dose on Sunday so I feel it's mainly based on the missing dose. I don't know if it takes a little while for the body to get back on track after missing a dose or if these episodes may be a sign that we need another medication adjustment...So do I call today and let the EP Cardiologist know? Or do I wait and see if she has anymore unexplained SVT?
It's times like this that it sucks going through this for the first time ever, sometimes I just wish I had experience with it already and always knew exactly what to do and when/how to do it.
5.15.2012
Breakthrough SVT Epsiode
I think I may need to make a chart and place it in the side bar of this blog to keep track of Miss K's SVT episodes. I always hope we're done with them when it's been a bit since the last one, but apparently we're in this for the long haul :o(.
Miss K had another SVT episode last night. This one was brought on by fright, seriously she got startled and scared badly enough to cause SVT :o(. I'd like to blame her Daddy but I just can't, he didn't know any better, and I'm sure he learned a valuable lesson from it for the future.
Daddy likes to vaccum, yes that's right DADDY likes to vaccum lol. Last night he decided to vaccum the carpets. Apparently, and we hadn't noticed this until last night, he has never vaccumed with Miss K sitting in the same room ever before. Somehow he has managed to do any vaccuming when Miss K is with me either out running errands or in her room nursing. Daddy decided he better warn Miss K that the vaccum was starting so he WOULDN'T scare her, it wasn't a good idea. She was sitting quite near to the vaccum when Daddy said in an urgent tone "(Miss K!)" just trying to get her attention because she was very involved in playing with a toy, then "(Miss K!) Daddy's going to vaccum K? I'm turning it on K?" and then he turned the vaccum on...Miss K jumped bigger than we've ever seen her jump, she flailed her arms frantically and held her breath then she started screaming frantically like someone (or something) had caused her great pain. I rushed over and picked her up to soothe her and she was instantly fine. She is not afraid of the vaccum, usually. I run the vaccum all the time with Miss K right there on the floor and she doesn't even notice most of the time, but that urgent tone of voice her Daddy used to catch her attention set the tone that what was going happen was going to be frightening. I listened to her heart with my ear instead of getting a stethoscope and it sounded fine to me so I didn't go get the stethoscope out to double check. I should have though. We went through normal bedtime routine of feeding her cereal and getting the tub ready when I felt I should check her heart again, this was almost an hour after her scary vaccum encounter. Miss K was in SVT, I couldn't count it though because she was so wiggly and active I was lucky to have 10 seconds at the most with the stethoscope on her little chest, if I had to make an educated guess I'd say her heart was beating at about 20 beats for every 5 seconds, that's about double her usual 10-12 beats in 5 seconds. I did some math and as inaccurate as it is I worked some numbers and I'm figuring she was beating around 240 BPM. I first tried tipping her upside down, this did not work so I tried blowing in her face, another difficult feat with a wiggly and active baby. After 2 attempts at blowing in her face (and I was sure there was no way it had worked) we check her heart rate again to find it beating a nice slow and steady pace again.
I'm disappointed. Miss K's Cardiologist said he'd only consider taking her off the Amiodarone on her birthday IF she made it from her 8 month check up until her 12 month check up completely SVT free :o(. I was hoping to get to cancel her 10 month check up since the Cardiologist suggested we skip it if we felt she was doing great, but I feel if she's still having episodes she needs to visit him and make sure everything is still OK.
Watch for a new chart on the sidebar if I can figure out how to make one...
Miss K had another SVT episode last night. This one was brought on by fright, seriously she got startled and scared badly enough to cause SVT :o(. I'd like to blame her Daddy but I just can't, he didn't know any better, and I'm sure he learned a valuable lesson from it for the future.
Daddy likes to vaccum, yes that's right DADDY likes to vaccum lol. Last night he decided to vaccum the carpets. Apparently, and we hadn't noticed this until last night, he has never vaccumed with Miss K sitting in the same room ever before. Somehow he has managed to do any vaccuming when Miss K is with me either out running errands or in her room nursing. Daddy decided he better warn Miss K that the vaccum was starting so he WOULDN'T scare her, it wasn't a good idea. She was sitting quite near to the vaccum when Daddy said in an urgent tone "(Miss K!)" just trying to get her attention because she was very involved in playing with a toy, then "(Miss K!) Daddy's going to vaccum K? I'm turning it on K?" and then he turned the vaccum on...Miss K jumped bigger than we've ever seen her jump, she flailed her arms frantically and held her breath then she started screaming frantically like someone (or something) had caused her great pain. I rushed over and picked her up to soothe her and she was instantly fine. She is not afraid of the vaccum, usually. I run the vaccum all the time with Miss K right there on the floor and she doesn't even notice most of the time, but that urgent tone of voice her Daddy used to catch her attention set the tone that what was going happen was going to be frightening. I listened to her heart with my ear instead of getting a stethoscope and it sounded fine to me so I didn't go get the stethoscope out to double check. I should have though. We went through normal bedtime routine of feeding her cereal and getting the tub ready when I felt I should check her heart again, this was almost an hour after her scary vaccum encounter. Miss K was in SVT, I couldn't count it though because she was so wiggly and active I was lucky to have 10 seconds at the most with the stethoscope on her little chest, if I had to make an educated guess I'd say her heart was beating at about 20 beats for every 5 seconds, that's about double her usual 10-12 beats in 5 seconds. I did some math and as inaccurate as it is I worked some numbers and I'm figuring she was beating around 240 BPM. I first tried tipping her upside down, this did not work so I tried blowing in her face, another difficult feat with a wiggly and active baby. After 2 attempts at blowing in her face (and I was sure there was no way it had worked) we check her heart rate again to find it beating a nice slow and steady pace again.
I'm disappointed. Miss K's Cardiologist said he'd only consider taking her off the Amiodarone on her birthday IF she made it from her 8 month check up until her 12 month check up completely SVT free :o(. I was hoping to get to cancel her 10 month check up since the Cardiologist suggested we skip it if we felt she was doing great, but I feel if she's still having episodes she needs to visit him and make sure everything is still OK.
Watch for a new chart on the sidebar if I can figure out how to make one...
4.10.2012
So Close, and Yet so Far...
We thought we made it, we thought we might get to say "No SVT episodes since January" come her next Cardiology appointment, we were so hopeful...
Last night was a huge disappointment for us. At bedtime I gave Miss K her Propanolol and for some strange reason she panicked trying to swallow, this is not something new to us. When Miss K was a tiny baby she would panic while swallowing it every time we gave it to her, and every time she'd do this it would cause her to go into SVT. For the last 5 months she has gotten used to it and even when she has panicked it hasn't caused SVT at all. Last night was rough, I don't know what happened but when I gave her the Propanolol she really panicked, and I mean REALLY, she stopped breathing for at least 30 seconds (a lot longer than she ever has before) and gasped and choked on the Propanolol. We got her calmed down, she was quite happy through it all strangely enough, and finished giving it to her she took the second half of it like a champ. I think she was just so happy when I gave her the first half that she was too distracted and didn't know what was going on until it hit her throat. FYI: if you've never tasted Propanolol you should know that it tastes like very strong cough medicine, it hits your throat like a ton of bricks, my best explanation is that when it hits your throat it's a lot like your very first shot of Whiskey (yes I have had Whiskey, don't judge, it was 100% medicinal), it makes you choke and gag like crazy, it can even take your breath away. About 10 minutes later I had her Daddy listen to her heart, I just felt like something wasn't right and you can guarantee when I feel this way and I know I'm right I will refuse to be the first to listen to her because it scares me to death. Her Daddy handed me the stethoscope and said "It's beating WAY fast" so I had to listen as well much to my dismay. Her heart was beating faster than I've heard it beat since her first episode in January, when I timed it I lost track multiple times and had to start over, in the end I estimated that it was beating in the 230 range or higher. Of course it scared me, it scared me to death, I really don't think I'll EVER get over that. Miss K was still happy and playing, she was actually full of giggles and smiles and just all out being a real goofball so you wouldn't have known anything was wrong without listening to her heart. The first Physical Maneuver I tried was to tip her upside down, the first try was for 5 seconds...No luck. Second try was for 10 seconds...Still no luck. One more try for 15 seconds...And again no luck. I tried to make her bear down by putting her knees to her chest and pushing hard...No luck :o(. Then I panicked more, I thought for sure we were going to end up in the hospital with a happy, seemingly healthy, baby getting an IV and Adenosine. On a whim I tried blowing in her face, since this did not work the last 2 times she was in SVT I wasn't confident it would work this time and was about ready to just skip it and move on to an ice bag...Amazingly blowing in Miss K's face worked like a charm, as soon as she got her breath back she was out of SVT and ready to go to bed. Needless to say we were quite relieved, but also quite stressed. We both spent the night listening for her to cry and checking in on her to make sure she was breathing and her heart was beating normal.
Her next Cardiology appointment is next Tuesday, she made it 3 months SVT free just like the last stretch, she got our hopes all up, I can't understand why just the week before her appointment she had to have an episode. I don't know what her Cardiologist is going to say about it, at least this time we know something put her in it and we know what that something was but I don't know if he'll see it as OK or if he'll really dislike it.
We were hoping and praying to get her off her Amiodarone SOON, I even was (and am still) hoping he might start weaning her off of it at this next appointment. My goal is still to get her Amiodarone free before or on her birthday. She has been on the same dose of Amiodarone (6 ML once daily) since she was 6 weeks old, she has gained over 10 pounds since then and at her 4 month appointment her Cardiologist mentioned that she was finally weighing what she should weigh for her dose (at 6 weeks old they had her on a dose WAY higher than recommended for her weight). So it's obvious that she's been taking less than what is OK for her current weight for almost 4 months now. That to me was a sign that we were weaning her slowly as it is and that she was doing great, the last SVT episode didn't cause her Cardiologist to up her Amiodarone dose, he upped the Propanolol instead and she's done wonderfully with it.
My hopes now are that her Cardiologist will start thinking about weaning anyway, that her weight to dose ratio will show that she's taking WAY less Amiodarone than she can and that it will show that she's been slowly weaning off of it just by not needing a higher dose with weight gain. I really don't think he'll up the dose at this upcoming appointment, but I'm not so sure it's likely he'll take her off of it like I hoped.
Maybe she'll be off the Amiodarone by her birthday....maybe.
Last night was a huge disappointment for us. At bedtime I gave Miss K her Propanolol and for some strange reason she panicked trying to swallow, this is not something new to us. When Miss K was a tiny baby she would panic while swallowing it every time we gave it to her, and every time she'd do this it would cause her to go into SVT. For the last 5 months she has gotten used to it and even when she has panicked it hasn't caused SVT at all. Last night was rough, I don't know what happened but when I gave her the Propanolol she really panicked, and I mean REALLY, she stopped breathing for at least 30 seconds (a lot longer than she ever has before) and gasped and choked on the Propanolol. We got her calmed down, she was quite happy through it all strangely enough, and finished giving it to her she took the second half of it like a champ. I think she was just so happy when I gave her the first half that she was too distracted and didn't know what was going on until it hit her throat. FYI: if you've never tasted Propanolol you should know that it tastes like very strong cough medicine, it hits your throat like a ton of bricks, my best explanation is that when it hits your throat it's a lot like your very first shot of Whiskey (yes I have had Whiskey, don't judge, it was 100% medicinal), it makes you choke and gag like crazy, it can even take your breath away. About 10 minutes later I had her Daddy listen to her heart, I just felt like something wasn't right and you can guarantee when I feel this way and I know I'm right I will refuse to be the first to listen to her because it scares me to death. Her Daddy handed me the stethoscope and said "It's beating WAY fast" so I had to listen as well much to my dismay. Her heart was beating faster than I've heard it beat since her first episode in January, when I timed it I lost track multiple times and had to start over, in the end I estimated that it was beating in the 230 range or higher. Of course it scared me, it scared me to death, I really don't think I'll EVER get over that. Miss K was still happy and playing, she was actually full of giggles and smiles and just all out being a real goofball so you wouldn't have known anything was wrong without listening to her heart. The first Physical Maneuver I tried was to tip her upside down, the first try was for 5 seconds...No luck. Second try was for 10 seconds...Still no luck. One more try for 15 seconds...And again no luck. I tried to make her bear down by putting her knees to her chest and pushing hard...No luck :o(. Then I panicked more, I thought for sure we were going to end up in the hospital with a happy, seemingly healthy, baby getting an IV and Adenosine. On a whim I tried blowing in her face, since this did not work the last 2 times she was in SVT I wasn't confident it would work this time and was about ready to just skip it and move on to an ice bag...Amazingly blowing in Miss K's face worked like a charm, as soon as she got her breath back she was out of SVT and ready to go to bed. Needless to say we were quite relieved, but also quite stressed. We both spent the night listening for her to cry and checking in on her to make sure she was breathing and her heart was beating normal.
Her next Cardiology appointment is next Tuesday, she made it 3 months SVT free just like the last stretch, she got our hopes all up, I can't understand why just the week before her appointment she had to have an episode. I don't know what her Cardiologist is going to say about it, at least this time we know something put her in it and we know what that something was but I don't know if he'll see it as OK or if he'll really dislike it.
We were hoping and praying to get her off her Amiodarone SOON, I even was (and am still) hoping he might start weaning her off of it at this next appointment. My goal is still to get her Amiodarone free before or on her birthday. She has been on the same dose of Amiodarone (6 ML once daily) since she was 6 weeks old, she has gained over 10 pounds since then and at her 4 month appointment her Cardiologist mentioned that she was finally weighing what she should weigh for her dose (at 6 weeks old they had her on a dose WAY higher than recommended for her weight). So it's obvious that she's been taking less than what is OK for her current weight for almost 4 months now. That to me was a sign that we were weaning her slowly as it is and that she was doing great, the last SVT episode didn't cause her Cardiologist to up her Amiodarone dose, he upped the Propanolol instead and she's done wonderfully with it.
My hopes now are that her Cardiologist will start thinking about weaning anyway, that her weight to dose ratio will show that she's taking WAY less Amiodarone than she can and that it will show that she's been slowly weaning off of it just by not needing a higher dose with weight gain. I really don't think he'll up the dose at this upcoming appointment, but I'm not so sure it's likely he'll take her off of it like I hoped.
Maybe she'll be off the Amiodarone by her birthday....maybe.
1.25.2012
Another SVT Episode
This month has been a roller coaster with Miss K! It wasn't fun starting the new year with an ear infection in the first place but it's gotten progressively worse.
We went in to see the Pediatrician last week for a follow up on Miss K's ear infection. Good news, her ear was no longer infected, bad news it had a lot of fluid left in it. She's scheduled to go in for her 6 month well baby check up in 2 weeks so her Pediatrician planned to see her again then to check the progress of her ear. Since it was the beginning of the weekend when we saw the Pediatrician he wanted to make sure we were prepared for anything without the need of a doctor so he prescribed another round of Amoxicillin for Miss K and instructed me to fill it for her if she got worse over the weekend (i.e. pulling or tugging at her ear, congestion, cough or fever). Miss K did great over the weekend though so we thought we were in the clear.
Yesterday Miss K started getting really fussy and hard to keep happy, I attributed it to her teeth moving. Last night wasn't much fun for any of us. Miss K tossed and turned and cried out constantly throughout the night, ending up sleeping in our bed with us so we could console her more easily without needing to leave our own bed to do so.
This afternoon Miss K started tugging at her ear, the same one that was previously infected and full of fluid. So I contacted the Pediatrician and he instructed me to fill the prescription for Amoxicillin.
We made matters worse for Miss K by taking a little shopping trip this evening, the change in altitude got to her ear ache. And we also messed with her nap and feeding schedule for the evening.
By the time bedtime rolled around poor Miss K's ear was bothering her so much she was hard to console, she was also overly tired and hungry. Because of her medication schedule I could not feed her or allow her to sleep so I put some numbing drops in her ears and tried my best to keep her happy. By the time I was able to give her her Propanalol she was VERY worked up, and forcing her to take medication she didn't want to take made her more upset. Then her screaming hit its worst. I got her eating and pulled out the stethoscope to check her heart on a hunch and sure enough Miss K was in SVT. Of course I panicked, I was so upset myself I was shaking and my shaking wasn't helping at all. Miss K was in bliss finally getting to eat. I didn't want to disturb her to try a physical maneuver, I was afraid it would only make matters worse. So I tried the physical maneuver of tipping her upside down to change her blood pressure, this I could do while she ate without disturbing her. It didn't work. I had to make myself calm down and take a few deep breaths, then I listened to her heart again and it was beating normal again. I think it happened on its own because she calmed down.
I'll be calling her Cardiologist tomorrow morning to let him know about these 2 new episodes this month. We'll see if he still wants to wait 2 more weeks to see her or if we'll be moving the date up.
I would love to say I was looking forward to taking her off the Amiodarone but I'd be lying. I was scared to death. Scared she still needed it. Scared she'd have another SVT episode. Scared we'd end up hospitalized again. Scared. Scared. Scared. But I really want her off this toxic medication as soon as possible. I know now that February will not be the month that we end the Amiodarone. I also know that we'll more than likely be adjusting the medication doses.
One thing I can be truly be hopeful for is the possibility to change her Amiodarone from a compound to a pill form so we can mix it with food to give it to her instead of forcing it down her throat with a syringe. She has become very difficult with taking her medications. It takes 5-10 minutes to get them down her. The Propanalol is a low enough dose that I'm not too anxious to get it in pill form, I can endure that one. But we have to give her so much Amiodarone that it's getting frustrating going through her spitting it out, gagging on it, occasionally throwing it all up with her last meal, and most recently holding it in her mouth and refusing to swallow; she's really great at this one! No matter how far back we tip her head she will not swallow it, she can swallow her own saliva past the medication without swallowing even a drop of it! No amount of flavoring will help her, we've even tried Hershey's Chocolate Syrup. It's not the taste, it's the way we're giving it to her, she knows what it is and knows she doesn't want it. So, if we're keeping her on the Amiodarone then hopefully we can make things easier on all of us.
We went in to see the Pediatrician last week for a follow up on Miss K's ear infection. Good news, her ear was no longer infected, bad news it had a lot of fluid left in it. She's scheduled to go in for her 6 month well baby check up in 2 weeks so her Pediatrician planned to see her again then to check the progress of her ear. Since it was the beginning of the weekend when we saw the Pediatrician he wanted to make sure we were prepared for anything without the need of a doctor so he prescribed another round of Amoxicillin for Miss K and instructed me to fill it for her if she got worse over the weekend (i.e. pulling or tugging at her ear, congestion, cough or fever). Miss K did great over the weekend though so we thought we were in the clear.
Yesterday Miss K started getting really fussy and hard to keep happy, I attributed it to her teeth moving. Last night wasn't much fun for any of us. Miss K tossed and turned and cried out constantly throughout the night, ending up sleeping in our bed with us so we could console her more easily without needing to leave our own bed to do so.
This afternoon Miss K started tugging at her ear, the same one that was previously infected and full of fluid. So I contacted the Pediatrician and he instructed me to fill the prescription for Amoxicillin.
We made matters worse for Miss K by taking a little shopping trip this evening, the change in altitude got to her ear ache. And we also messed with her nap and feeding schedule for the evening.
By the time bedtime rolled around poor Miss K's ear was bothering her so much she was hard to console, she was also overly tired and hungry. Because of her medication schedule I could not feed her or allow her to sleep so I put some numbing drops in her ears and tried my best to keep her happy. By the time I was able to give her her Propanalol she was VERY worked up, and forcing her to take medication she didn't want to take made her more upset. Then her screaming hit its worst. I got her eating and pulled out the stethoscope to check her heart on a hunch and sure enough Miss K was in SVT. Of course I panicked, I was so upset myself I was shaking and my shaking wasn't helping at all. Miss K was in bliss finally getting to eat. I didn't want to disturb her to try a physical maneuver, I was afraid it would only make matters worse. So I tried the physical maneuver of tipping her upside down to change her blood pressure, this I could do while she ate without disturbing her. It didn't work. I had to make myself calm down and take a few deep breaths, then I listened to her heart again and it was beating normal again. I think it happened on its own because she calmed down.
I'll be calling her Cardiologist tomorrow morning to let him know about these 2 new episodes this month. We'll see if he still wants to wait 2 more weeks to see her or if we'll be moving the date up.
I would love to say I was looking forward to taking her off the Amiodarone but I'd be lying. I was scared to death. Scared she still needed it. Scared she'd have another SVT episode. Scared we'd end up hospitalized again. Scared. Scared. Scared. But I really want her off this toxic medication as soon as possible. I know now that February will not be the month that we end the Amiodarone. I also know that we'll more than likely be adjusting the medication doses.
One thing I can be truly be hopeful for is the possibility to change her Amiodarone from a compound to a pill form so we can mix it with food to give it to her instead of forcing it down her throat with a syringe. She has become very difficult with taking her medications. It takes 5-10 minutes to get them down her. The Propanalol is a low enough dose that I'm not too anxious to get it in pill form, I can endure that one. But we have to give her so much Amiodarone that it's getting frustrating going through her spitting it out, gagging on it, occasionally throwing it all up with her last meal, and most recently holding it in her mouth and refusing to swallow; she's really great at this one! No matter how far back we tip her head she will not swallow it, she can swallow her own saliva past the medication without swallowing even a drop of it! No amount of flavoring will help her, we've even tried Hershey's Chocolate Syrup. It's not the taste, it's the way we're giving it to her, she knows what it is and knows she doesn't want it. So, if we're keeping her on the Amiodarone then hopefully we can make things easier on all of us.
1.12.2012
SVT Episode
I got the living daylights scared out of me today :o(. Miss K decided to have her first SVT episode in over 3 months. I panicked...
I wish I could say what caused the episode and how long she was in it before I realized something was wrong...I feel horrible for not knowing, I feel like the worst mom on earth :o(.
I'm almost sure she just sporadically went into SVT without cause. I think it happened just before I picked her up at one time. As I was picking her up she started to cry like I'd hurt her, though I'd done nothing to cause her any pain, I thought maybe she just had a gas bubble because sometimes when the bubble is really bad she'll cry like that. It took me a few minutes to get her calmed down then she seemed fine. I played with her and even got her to giggle. She got really mellow after a few minutes of play and just sat on my lap with her back to my chest. When she sits like this I almost always put my hand over her heart and concentrate on the beats, just out of habit. She'd actually been sitting like that for about 5 minutes before I realized her heart seemed to be beating kind of hard. I took her to her bedroom and got out the stethoscope and found that her heart was beating quite quickly though I wasn't sure exactly how fast so I watched the clock and counted it out. While I was doing this Miss K started to go limp and her head started to nod, I didn't really think too much of it at the moment because she was really tired anyway, it was past her usual nap time. I ended up estimating her heart to be beating at about 210 BPM. I panicked. And she had started to get even more limp, by this point she was even getting unresponsive. So I did the Physical Maneuver that used to always work on her, I blew in her face. She didn't like this one at all and she cried but after that she went limp and unresponsive again. I panicked even more. I couldn't decide if this was an ice bag situation or what. I ended up tipping her upside down and bringing her back up, this scared me when she went kind of purple in the face and seemed to quit breathing. This is the point I started to cry. I grabbed my phone and called my husband to come home from work (he only works about 5 minutes away, takes him less time to get home and load us up than to call an ambulance, which is also about 5 minutes away from our home). Then I checked Miss K's heart again, it was definitely beating slower but I didn't bother to call my hubby back. And then out of the blue Miss K was fine! Her color was back to normal and she started cooing and playing again. My husband walked in and rushed to pick her up, he listened to her heart and verified that it was beating at the rate it usually is when he listens to her. Then I relaxed as he hugged me and we held Miss K together.
I'm really upset by this. I thought with the medications we were OK now. And next month is when we were supposed to take her off the Amiodarone to see if she still needs it. Now I'm pretty sure she does still need it, if she's going to have an episode while on it then she's bound to have more when off, right? I really want to get her off that toxic medication, but I doubt I'm going to get what I want now. And I'm down right scared.
I wish I could say what caused the episode and how long she was in it before I realized something was wrong...I feel horrible for not knowing, I feel like the worst mom on earth :o(.
I'm almost sure she just sporadically went into SVT without cause. I think it happened just before I picked her up at one time. As I was picking her up she started to cry like I'd hurt her, though I'd done nothing to cause her any pain, I thought maybe she just had a gas bubble because sometimes when the bubble is really bad she'll cry like that. It took me a few minutes to get her calmed down then she seemed fine. I played with her and even got her to giggle. She got really mellow after a few minutes of play and just sat on my lap with her back to my chest. When she sits like this I almost always put my hand over her heart and concentrate on the beats, just out of habit. She'd actually been sitting like that for about 5 minutes before I realized her heart seemed to be beating kind of hard. I took her to her bedroom and got out the stethoscope and found that her heart was beating quite quickly though I wasn't sure exactly how fast so I watched the clock and counted it out. While I was doing this Miss K started to go limp and her head started to nod, I didn't really think too much of it at the moment because she was really tired anyway, it was past her usual nap time. I ended up estimating her heart to be beating at about 210 BPM. I panicked. And she had started to get even more limp, by this point she was even getting unresponsive. So I did the Physical Maneuver that used to always work on her, I blew in her face. She didn't like this one at all and she cried but after that she went limp and unresponsive again. I panicked even more. I couldn't decide if this was an ice bag situation or what. I ended up tipping her upside down and bringing her back up, this scared me when she went kind of purple in the face and seemed to quit breathing. This is the point I started to cry. I grabbed my phone and called my husband to come home from work (he only works about 5 minutes away, takes him less time to get home and load us up than to call an ambulance, which is also about 5 minutes away from our home). Then I checked Miss K's heart again, it was definitely beating slower but I didn't bother to call my hubby back. And then out of the blue Miss K was fine! Her color was back to normal and she started cooing and playing again. My husband walked in and rushed to pick her up, he listened to her heart and verified that it was beating at the rate it usually is when he listens to her. Then I relaxed as he hugged me and we held Miss K together.
I'm really upset by this. I thought with the medications we were OK now. And next month is when we were supposed to take her off the Amiodarone to see if she still needs it. Now I'm pretty sure she does still need it, if she's going to have an episode while on it then she's bound to have more when off, right? I really want to get her off that toxic medication, but I doubt I'm going to get what I want now. And I'm down right scared.
12.28.2011
Home: 2 Weeks After Release From PCMC
We've almost been home two weeks and I have to say it's been a very long 2 weeks.
Miss K is doing great, we had a two day stretch this week that kind of worried us though. She started going into SVT more often, not going more than 10-12 hours between episodes sometimes less, and she started getting harder to convert out of it, twice we actually had to use the ice pack on her face (See Physical Maneuvers). But she's done really great otherwise. We're not sure why she was going into it so often out of the blue but we are sure she was hard to get out of it because she has allergies, just like the rest of us, and has had a slightly congested nose. I think the congestion was preventing her from taking a deep enough breath to come out of the SVT. She is awake and alert a lot more often, smiling more and more, and very strong, she can hold her head up very well and for long periods of time. She has such a cute little personality :o).
Miss K is doing great, we had a two day stretch this week that kind of worried us though. She started going into SVT more often, not going more than 10-12 hours between episodes sometimes less, and she started getting harder to convert out of it, twice we actually had to use the ice pack on her face (See Physical Maneuvers). But she's done really great otherwise. We're not sure why she was going into it so often out of the blue but we are sure she was hard to get out of it because she has allergies, just like the rest of us, and has had a slightly congested nose. I think the congestion was preventing her from taking a deep enough breath to come out of the SVT. She is awake and alert a lot more often, smiling more and more, and very strong, she can hold her head up very well and for long periods of time. She has such a cute little personality :o).
Home 9-6-11
Miss K is doing great, she's being a normal eat, sleep and poop newborn baby :o). We check her heart rate daily with a stethoscope, every diaper change and/or feeding. So far since we got home she's had 5 SVT episodes that we've caught and I've been able to get her out of it very easily by blowing in her face (See Physical Maneuvers). She's cute as can be and growing like a weed! She hates getting up to eat at 12:00am or 1:00am, if I didn't have to wake her up to give her Propanolol she'd probably sleep through the night, she's really cranky about getting up and will only eat for a few minutes before she's out again. She loves to get up at 4:00am or 5:00am to eat, this happens to be MY least favorite, she loves to be up and bright eyed ready to play after eating very well. She has quite a few awake and active moments throughout the day and they are usually for very long periods of time. She's trying to adjust to home life. It's tough having a big brother who needs attention as well after having Mommy all to herself for 3 weeks. She's going to keep us busy for a while, we have her well baby check tomorrow morning, an appointment with her assigned cardiologist Thursday morning, an appointment with the Electro Physiology clinic next week and upcoming appointments with Neurology and getting a sedated MRI done in the next few months with multiple Cardiology appointments spread out through the next 6 months or so.
Primary Children's Medical Center 8-30-11
I just realized Miss K turned 3 weeks old yesterday, time has really flown! I can't believe we've spent that whole 3 weeks in the hospital, it doesn't even feel like we had those few short days at home, I can barely remember them :o(.
Miss K made it 38 hours without going into SVT. I blew it this morning though :o(. While feeding her at 4am she ate about 25 minutes on one side, I knew she was done and had eaten more than her fill (her usual is about 10 minutes on one side), she stopped to burp and then the nurse came in to assess her. After her assessment I sat down to rock her and she started rooting around acting hungry so I figured feeding on the other side wouldn't hurt, she ate for about 10 minutes and then started throwing up, I mean really throwing up, she emptied her tummy all over the both of us :o(. I'm sure it was because she was over full, I feel really bad :o(. The throwing up caused her to go into SVT and then she got the hiccups. I had to sit and rock her, she wouldn't come out of SVT on her own though so after 20 minutes I had to blow in her face, I'm proud to say I only had to blow lightly and just once and then she came out of the SVT :o), that's a huge step (See Physical Maneuvers)! But the hiccups didn't go away so I had to hold and rock her for another 1/2 hour before she calmed down and fell asleep. I hate those long interruptions that early in the morning, I was so tired when I finally got to lay back down. Sadly the little cutie was up less than 2 hours later wanting to eat again so I didn't get as much sleep as I would have liked last night.
The Cardiologist came by this morning, even with the SVT happening this morning he was impressed with her progress, he told me we could go home tomorrow :o), YAY!
At about 11:30 this morning she had another SVT episode, we're not sure why she went into it, she just woke up from a nap screaming and was in SVT instantly. I tried blowing in her face multiple times but she just wouldn't calm down long enough to come out of it, the Doctor tried icing her but that didn't work (I honestly don't think he was doing it right, it was his first time to ever do it so it was a learning experience for him). After about 15 minutes of trying to get her out of SVT I finally insisted on feeding her since I knew she was starving and wouldn't quit crying. She stayed in SVT for another 10 minutes and then came out of it on her own while she was eating.
I have no idea what the Cardiologist will have to say about this new episode, they were confident in sending us home before because she comes out of it quickly either on her own or just by me blowing in her face, I hope this episode doesn't change their minds! I still feel like she's doing great and we're more than ready to leave here so I hope my instincts are correct :o).
I stopped in at the Eligibility Counselors office this morning to see what type of financial help they had to offer and to see if we qualify. She brought up Miss K's account and asked if I knew the balance, of course I didn't because I haven't seen any bills yet and I hadn't talked to anyone yet. She scared me to death when she showed me the balance, and I believe it was just for PCMC, I don't think it included the Doctors or specialists charges though I really hope it did! She could have brought up our account for UVMC if I wanted her to but I was feeling way too overwhelmed and hopeless after seeing the first balance so I told her "no", I know I shouldn't have but I didn't feel prepared to know any more than I did at the moment considering Daddy's already opened a bill from there that was $500 or more, it was just for the amniotic fluid test to see if my water had really broken...the test I didn't need because 5 minutes later my water really did break. So, here I go filling out applications for different financial help, I hope we qualify for the best or at least second best help otherwise we'll be struggling. I told Daddy Miss K isn't getting a wedding, lol! He said she's not going to college either unless she pays her own way, lol!
Miss K made it 38 hours without going into SVT. I blew it this morning though :o(. While feeding her at 4am she ate about 25 minutes on one side, I knew she was done and had eaten more than her fill (her usual is about 10 minutes on one side), she stopped to burp and then the nurse came in to assess her. After her assessment I sat down to rock her and she started rooting around acting hungry so I figured feeding on the other side wouldn't hurt, she ate for about 10 minutes and then started throwing up, I mean really throwing up, she emptied her tummy all over the both of us :o(. I'm sure it was because she was over full, I feel really bad :o(. The throwing up caused her to go into SVT and then she got the hiccups. I had to sit and rock her, she wouldn't come out of SVT on her own though so after 20 minutes I had to blow in her face, I'm proud to say I only had to blow lightly and just once and then she came out of the SVT :o), that's a huge step (See Physical Maneuvers)! But the hiccups didn't go away so I had to hold and rock her for another 1/2 hour before she calmed down and fell asleep. I hate those long interruptions that early in the morning, I was so tired when I finally got to lay back down. Sadly the little cutie was up less than 2 hours later wanting to eat again so I didn't get as much sleep as I would have liked last night.
The Cardiologist came by this morning, even with the SVT happening this morning he was impressed with her progress, he told me we could go home tomorrow :o), YAY!
At about 11:30 this morning she had another SVT episode, we're not sure why she went into it, she just woke up from a nap screaming and was in SVT instantly. I tried blowing in her face multiple times but she just wouldn't calm down long enough to come out of it, the Doctor tried icing her but that didn't work (I honestly don't think he was doing it right, it was his first time to ever do it so it was a learning experience for him). After about 15 minutes of trying to get her out of SVT I finally insisted on feeding her since I knew she was starving and wouldn't quit crying. She stayed in SVT for another 10 minutes and then came out of it on her own while she was eating.
I have no idea what the Cardiologist will have to say about this new episode, they were confident in sending us home before because she comes out of it quickly either on her own or just by me blowing in her face, I hope this episode doesn't change their minds! I still feel like she's doing great and we're more than ready to leave here so I hope my instincts are correct :o).
I stopped in at the Eligibility Counselors office this morning to see what type of financial help they had to offer and to see if we qualify. She brought up Miss K's account and asked if I knew the balance, of course I didn't because I haven't seen any bills yet and I hadn't talked to anyone yet. She scared me to death when she showed me the balance, and I believe it was just for PCMC, I don't think it included the Doctors or specialists charges though I really hope it did! She could have brought up our account for UVMC if I wanted her to but I was feeling way too overwhelmed and hopeless after seeing the first balance so I told her "no", I know I shouldn't have but I didn't feel prepared to know any more than I did at the moment considering Daddy's already opened a bill from there that was $500 or more, it was just for the amniotic fluid test to see if my water had really broken...the test I didn't need because 5 minutes later my water really did break. So, here I go filling out applications for different financial help, I hope we qualify for the best or at least second best help otherwise we'll be struggling. I told Daddy Miss K isn't getting a wedding, lol! He said she's not going to college either unless she pays her own way, lol!
12.27.2011
Primary Children's Medical Center 8-27-11
Sorry, I had to skip a day this time around. I took off Thursday evening and left Daddy here with Miss K and a good supply of frozen milk. I went to my parents house to have cake with Roo for his birthday then I took him home for the night and all day Friday. I don't take my laptop with me when I do this because I don't even want the temptation to be there when I'm trying to spend all the time I can with my little boy. It was a great day and night with him. He was getting very cranky being at my parents, he's decided it's time to be home, I don't blame him at all it really is time to be home. He's starting to freak out a bit when I try to leave him anywhere. Thursday evening he worried I was leaving without him, he kept a close eye on me and when I started gathering things to leave he cried and ran around trying to grab all his stuff as fast as he could to get to the door before I did. It broke my heart, I was so glad I was taking him with me so I didn't have to break his heart and leave him! He was so happy to be home with me! When we got there I asked him if he wanted to get in his bed and he said "Mommy's bed?", I didn't think he'd remember napping with me in our bed last Sunday, lol! Luckily I got him to sleep in his own bed and he slept all night just fine :o). Friday was kind of crazy with him, he was so cranky and easy to make mad! But I enjoyed my time with him and I know he enjoyed it as well. I miss him so much and can't wait to be home as a family again!
Daddy had a pretty good night and day with Miss K. I guess she had to get another new IV Thursday night :o(. She also had a few more episodes of SVT. Friday morning the Cardiology team dropped by and announced they were putting her back on the Amiodarone IV drip for another 24 hours :o(, they weren't happy with how many times she'd been in SVT for the day. Daddy was very vague on any details with me so I really don't know what the real plan is or what's going on as of right now, I'll find out sometime this morning when they come by again.
Miss K has another infiltrated IV :o(, it's her left arm this time, which means we've run out of limbs to put IV's in, she's down to just her right arm :o(. I'm hoping and praying with all my might that she doesn't need the IV's anymore now so we don't have to do a central line, every time she's infiltrated an IV they've thought about a central line but dismissed the thought because she shouldn't be on IV's much longer, if she was going to get a central line it should have been done 2 weeks ago, I'm wishing they had done that in the first place to save her poor little body :o(. Amiodarone infiltrates look horrible, and they can't feel good at all :o(.
Cardiology is very happy with Miss K's latest progress, she's only gone into SVT 3 times in about 24 hours, YAY! But those 3 times were pretty long and she had to have help to come out of it, they don't really like that. But they said they think they've gone as far as they can with the medications and that since she can be brought out of SVT with natural methods that can be done at home they are willing to consider a closer go home date! So, they want her to be kept on the Amiodarone IV drip for 24 more hours just in case it helps steady her even more then they'll take her off of it tomorrow morning! They also said that if she blows another IV or infiltrates or whatever then we should just take the Amiodarone off and forget about the 24 hours, YAY again! Sadly, within an hour of them saying this Miss K's last IV went bad, luckily it's not infiltrated and it had nothing to do with her vein, the IV line itself had a leak in it near the entry so we had to remove it, but she has to have an IV in her just in case it's needed so they will be calling the IV team in again to place a new one, but we're just happy she can have a new one and that it was the IV itself that was having trouble.
The Cardiologist that talked to me today was new to me, I haven't seen him before. He is a great Doctor as far as I can tell. He told me that they would prefer she have some type of heart monitor for her to go home with since she's still going into SVT and they're sure she will most likely still be going into it very occasionally at home. So he suggested we buy a sports Heart Rate Monitor to put on her. Daddy had previously asked about these when talking to nurses and other Doctors but he never mentioned it to Cardiology because the others told him it wouldn't work because she's an infant. Today's Cardiologist told me they've put these monitors on trial in the clinic and that they work just great so he wants us to get one for her so we can monitor when she's in SVT and make sure she comes out of it. Daddy is so excited, it's what he wanted to do from the beginning so he's now currently researching the best of the best out there and we'll be getting one, no matter the cost. This is something we think saving money on an affordable one won't be acceptable so he's been instructed by me to ignore price and look only at reviews and quality, we'll pay what we have to to keep our baby girl safe.
The pediatric team came by and they are impressed as well, though less impressed than Cardiology, they aren't as easy going about the SVT as others are. In fact one of the Doctors came and sat through an SVT episode in the night and was on edge the whole time getting ready to call for Adenosine. I got her out of it by blowing in her face, he was impressed that worked, and then he relaxed (See Physical Maneuvers). So they aren't happy with Cardiology telling me just to take her off the Amiodarone drip if she looses her IV, lol! But they are happy with everything else, they're glad to see her on her way to recovery.
I have strict instructions to get her in to the pediatrician as soon as we're home and then in about a month her pediatrician needs to send her in for an MRI to see if she was/is having seizures. None of us think she really is but we need to make sure, better safe than sorry. They're keeping her on the Keppra for at least another 2 weeks just in case then they'll talk about whether she really needs it or not.
Her infiltrated IV locations on her two feet don't look great at all. I'm not happy, her cute little feet look so horrible and painful! But they can't really do anything about it but watch and monitor them. Her little arm that joined the party looks bad too, she has a "Popeye" bulge in it and it's all red :o(. I guess they've had a ton of Amiodarone infiltrates this week but they can't really do anything to help them heal, just watch them. So here's to hoping they heal well and quickly on their own! I haven't been able to get a good picture of them yet but I will post as soon as I do.
Forgot to mention we had a little birthday party for Roo here at the hospital last night. It was nice to have my parents, little sister and 1 brother and Daddy's mom and Grandma Dot come celebrate with us :o). Roo had a blast, he got to open more presents, he got a TON of Mater stuff, lol! Don't know what we'll do with it all! He got an awesome cake made by a friend of a friend and we all loved it :o), these girls are such sweethearts for doing this for me :o). We celebrated outside on the court and had a blast for an hour or so.
We took Miss K off the Amiodarone drip totally today because of the non-working IV, they called the cardiology team and they told us to keep it off, they're confident she'll be fine :o). We got a new IV put in, now it's just there in case they need one for whatever reason, but she's not hooked up to any drips :o).
Around 3:00pm Miss K had her first SVT episode in 12 hours. I had a new nurse who was sort of panicky, she didn't really know exactly how to handle SVT so seeing Miss K in it made her nervous. After 25 minutes she begged me to do something so I blew in Miss K's face...about 10 times...and it didn't work so the nurse pulled out a bag of ice, she started to panic then because Miss K's heart rhythm was coming up as VTACH on the screen instead of regular SVT. She took Miss K from me and applied the ice, it worked for a split second and then she went back into SVT, we went through this about 5 times before she finally came out of it. But, 5 minutes later she went right back into it, as soon as the ice was applied she went into what looked like VTACH again, the nurse then panicked more and after frantically (and not very effectively because she was so freaked out) trying the ice about 10 times in a row (without giving poor Miss K much of a break between) she pushed the Code Blue button. I had no idea she had done this until a whole team of Doctors and nurses came running and whipped open our doors and crowded into the room turning on lights, pushing furniture out of the way, throwing tables and chairs and bringing in equipment! The next thing I knew they had applied the patches for the crash cart to Miss K's little body ready to shock her if her heart stopped! She had an oxygen mask on and was suddenly hooked up to all kinds of things. I was pushed into a corner watching about 8-10 people crowded around my baby girl making it impossible for me to see her or anything that was going on. I didn't panic much though, I knew she was fine but I couldn't understand what the nurse thought was so important to need all that. They started getting out the Adenosine and about that time a calm Doctor applied the ice one more time and Miss K came right out of SVT and fell asleep. She was totally fine. The nurse got a little bit reprimanded by the charge nurse. I felt bad for her, she was a little embarrassed for what she had caused.
The good news is when the nurse and Doctors reported the whole episode to the cardiology team and asked them if we should turn the Amiodarone drip back on the cardiologists all said she was doing as well as expected without it and to keep it off :o). So hopefully tomorrow morning the decision is still the same and we can hopefully be moved back upstairs to regular care and not ever be back in here again! I am worried about what that last episode was though, her rhythm really didn't look good at all to me, it had me a little worried. I really don't want her doing that at home at all!
Tonight I'm going to start having the nurses teach me how to check her profusion efficiently and how to feel her pulse in her ankle to make sure she's pumping blood throughout her body, if I can do this correctly then IF she does go into SVT at home then I will be able to know if she's handling it well enough to ride it out or if we need to bring her back in. It'll make me feel a lot better.
So we'll just keep praying that she's really doing as well as they say she is and that we can all be home together as a family again very soon!
Daddy had a pretty good night and day with Miss K. I guess she had to get another new IV Thursday night :o(. She also had a few more episodes of SVT. Friday morning the Cardiology team dropped by and announced they were putting her back on the Amiodarone IV drip for another 24 hours :o(, they weren't happy with how many times she'd been in SVT for the day. Daddy was very vague on any details with me so I really don't know what the real plan is or what's going on as of right now, I'll find out sometime this morning when they come by again.
Miss K has another infiltrated IV :o(, it's her left arm this time, which means we've run out of limbs to put IV's in, she's down to just her right arm :o(. I'm hoping and praying with all my might that she doesn't need the IV's anymore now so we don't have to do a central line, every time she's infiltrated an IV they've thought about a central line but dismissed the thought because she shouldn't be on IV's much longer, if she was going to get a central line it should have been done 2 weeks ago, I'm wishing they had done that in the first place to save her poor little body :o(. Amiodarone infiltrates look horrible, and they can't feel good at all :o(.
Cardiology is very happy with Miss K's latest progress, she's only gone into SVT 3 times in about 24 hours, YAY! But those 3 times were pretty long and she had to have help to come out of it, they don't really like that. But they said they think they've gone as far as they can with the medications and that since she can be brought out of SVT with natural methods that can be done at home they are willing to consider a closer go home date! So, they want her to be kept on the Amiodarone IV drip for 24 more hours just in case it helps steady her even more then they'll take her off of it tomorrow morning! They also said that if she blows another IV or infiltrates or whatever then we should just take the Amiodarone off and forget about the 24 hours, YAY again! Sadly, within an hour of them saying this Miss K's last IV went bad, luckily it's not infiltrated and it had nothing to do with her vein, the IV line itself had a leak in it near the entry so we had to remove it, but she has to have an IV in her just in case it's needed so they will be calling the IV team in again to place a new one, but we're just happy she can have a new one and that it was the IV itself that was having trouble.
The Cardiologist that talked to me today was new to me, I haven't seen him before. He is a great Doctor as far as I can tell. He told me that they would prefer she have some type of heart monitor for her to go home with since she's still going into SVT and they're sure she will most likely still be going into it very occasionally at home. So he suggested we buy a sports Heart Rate Monitor to put on her. Daddy had previously asked about these when talking to nurses and other Doctors but he never mentioned it to Cardiology because the others told him it wouldn't work because she's an infant. Today's Cardiologist told me they've put these monitors on trial in the clinic and that they work just great so he wants us to get one for her so we can monitor when she's in SVT and make sure she comes out of it. Daddy is so excited, it's what he wanted to do from the beginning so he's now currently researching the best of the best out there and we'll be getting one, no matter the cost. This is something we think saving money on an affordable one won't be acceptable so he's been instructed by me to ignore price and look only at reviews and quality, we'll pay what we have to to keep our baby girl safe.
The pediatric team came by and they are impressed as well, though less impressed than Cardiology, they aren't as easy going about the SVT as others are. In fact one of the Doctors came and sat through an SVT episode in the night and was on edge the whole time getting ready to call for Adenosine. I got her out of it by blowing in her face, he was impressed that worked, and then he relaxed (See Physical Maneuvers). So they aren't happy with Cardiology telling me just to take her off the Amiodarone drip if she looses her IV, lol! But they are happy with everything else, they're glad to see her on her way to recovery.
I have strict instructions to get her in to the pediatrician as soon as we're home and then in about a month her pediatrician needs to send her in for an MRI to see if she was/is having seizures. None of us think she really is but we need to make sure, better safe than sorry. They're keeping her on the Keppra for at least another 2 weeks just in case then they'll talk about whether she really needs it or not.
Her infiltrated IV locations on her two feet don't look great at all. I'm not happy, her cute little feet look so horrible and painful! But they can't really do anything about it but watch and monitor them. Her little arm that joined the party looks bad too, she has a "Popeye" bulge in it and it's all red :o(. I guess they've had a ton of Amiodarone infiltrates this week but they can't really do anything to help them heal, just watch them. So here's to hoping they heal well and quickly on their own! I haven't been able to get a good picture of them yet but I will post as soon as I do.
Forgot to mention we had a little birthday party for Roo here at the hospital last night. It was nice to have my parents, little sister and 1 brother and Daddy's mom and Grandma Dot come celebrate with us :o). Roo had a blast, he got to open more presents, he got a TON of Mater stuff, lol! Don't know what we'll do with it all! He got an awesome cake made by a friend of a friend and we all loved it :o), these girls are such sweethearts for doing this for me :o). We celebrated outside on the court and had a blast for an hour or so.
8-27-11 A New Report:
Whew! What a long day! We hopped for boring as usual but got a little bit of excitement thrown in :o(. We took Miss K off the Amiodarone drip totally today because of the non-working IV, they called the cardiology team and they told us to keep it off, they're confident she'll be fine :o). We got a new IV put in, now it's just there in case they need one for whatever reason, but she's not hooked up to any drips :o).
Around 3:00pm Miss K had her first SVT episode in 12 hours. I had a new nurse who was sort of panicky, she didn't really know exactly how to handle SVT so seeing Miss K in it made her nervous. After 25 minutes she begged me to do something so I blew in Miss K's face...about 10 times...and it didn't work so the nurse pulled out a bag of ice, she started to panic then because Miss K's heart rhythm was coming up as VTACH on the screen instead of regular SVT. She took Miss K from me and applied the ice, it worked for a split second and then she went back into SVT, we went through this about 5 times before she finally came out of it. But, 5 minutes later she went right back into it, as soon as the ice was applied she went into what looked like VTACH again, the nurse then panicked more and after frantically (and not very effectively because she was so freaked out) trying the ice about 10 times in a row (without giving poor Miss K much of a break between) she pushed the Code Blue button. I had no idea she had done this until a whole team of Doctors and nurses came running and whipped open our doors and crowded into the room turning on lights, pushing furniture out of the way, throwing tables and chairs and bringing in equipment! The next thing I knew they had applied the patches for the crash cart to Miss K's little body ready to shock her if her heart stopped! She had an oxygen mask on and was suddenly hooked up to all kinds of things. I was pushed into a corner watching about 8-10 people crowded around my baby girl making it impossible for me to see her or anything that was going on. I didn't panic much though, I knew she was fine but I couldn't understand what the nurse thought was so important to need all that. They started getting out the Adenosine and about that time a calm Doctor applied the ice one more time and Miss K came right out of SVT and fell asleep. She was totally fine. The nurse got a little bit reprimanded by the charge nurse. I felt bad for her, she was a little embarrassed for what she had caused.
The good news is when the nurse and Doctors reported the whole episode to the cardiology team and asked them if we should turn the Amiodarone drip back on the cardiologists all said she was doing as well as expected without it and to keep it off :o). So hopefully tomorrow morning the decision is still the same and we can hopefully be moved back upstairs to regular care and not ever be back in here again! I am worried about what that last episode was though, her rhythm really didn't look good at all to me, it had me a little worried. I really don't want her doing that at home at all!
Tonight I'm going to start having the nurses teach me how to check her profusion efficiently and how to feel her pulse in her ankle to make sure she's pumping blood throughout her body, if I can do this correctly then IF she does go into SVT at home then I will be able to know if she's handling it well enough to ride it out or if we need to bring her back in. It'll make me feel a lot better.
So we'll just keep praying that she's really doing as well as they say she is and that we can all be home together as a family again very soon!
Primary Children's Medical Center 8-18-11
Tuesday, after my last update, Miss K had quite a few more episodes of SVT. Somehow Daddy was the only one able to break her out of it about 3 times before they could consider using ice (See Physical Maneuvers). He's such an awesome Daddy. The first SVT episode she had after Daddy got back to the hospital he leaned over her bassinet and talked really softly and quietly in her ear, pretty much cussing her out and letting her know she had to come out of it on her own, his own little Daddy talk, this worked awesome, she came out of SVT without any intervention. The second and third times that she went into SVT Daddy blew in her face multiple times to make her catch her breath, I tried doing it as well but for some reason only his breath worked, she came out of SVT on her own again. Then the "Daddy method" as I began to call it quit working and she wouldn't come out of it, we had to resort to the ice suffocation. In case I never explained that yet: They fill a bag with ice and place it over her whole face pretty much smothering her for 5 seconds to make her gasp and hold her breath, thus restarting her heart and hopefully getting out of SVT this is very heartbreaking and scary for a mom to watch, I cried every time. The first ice treatment worked like it had been before, but it took an hour to work. The second time we had to do it twice, then she went into SVT a third time and we tried the ice twice without success, nothing would get her out of it so they brought a team in and gave her a shot of Adenosine, which stops her heart for a split second and makes it restart into normal rhythm, this worked and she was OK for a few minutes then she went right back into SVT. She wouldn't come out of SVT this last time, we tried every method without success so her cardiologist sent her to PICU and put her on an IV drip of a type of beta blocker. We kept her on the oral Propanolol as well. We had a very long and sleepless night Tuesday night trying to get her out of SVT and keep her calm and happy.
We spent a long stressful Day Wednesday here in PICU with her, they tried several methods and several different medications to get her out of SVT but she stayed in it. She was very fussy and was only happy while being held all day. Daddy left me and went to work for the morning, I had to endure a horrible round of Adenosine again, which they did to her twice within minutes of each other, and we had no good results. I wasn't online all day because I was holding her and cuddling all day, I did get a short 1 hour nap at some point when she let me put her down, but then the Doctors all came in and woke me up to chat. I was so relieved when Daddy came back to take care of the two of us. If not for him I would be starving because they don't bring you food here and I can't bring myself to leave her without one of us sitting with her, even for a minute. He also keeps me calm, when he's not here I break down and can't stop crying.
Wednesday night my parents brought Roo up to see us. We spent an hour with them eating dinner in the cafeteria and then we brought my parents up to Miss K's "room" and left them sitting with her for about 45 minutes while we went out and spent some time with Roo just the 3 of us. Boy do we miss that kid! He was full of mischief but cute as can be. I talked the nurse in PICU into allowing him to come in and see "baby sister" for just a minute (they are supposed to be over the age of 2 and have had their 2 year immunizations, Roo is a week from that). He was so excited when I asked him if he wanted to come see his baby sister, he couldn't quit saying "see baby sister?" all the way into the PICU. He was very shy of her when he got here, I think he was very confused by all the wires and tubes hooked up to her, but he quickly got over it and wanted down to push buttons and cause trouble, lol! He got to come back and see her again just before they left to go home. It was so great to see him for a minute, I wish we could have spent the whole night and day with him, even better would have been to go home with him for good, it breaks my heart being away from my baby boy. I miss him so much even the thought of him makes me break into tears, I was almost inconsolable last night after he left. I hate this torn between two kids thing.
Wednesday night was a little less stressful for us but still hard to get through. Miss K stayed in SVT through the night, stressing us out big time. But we were able to get a few hours of sleep in here and there between feedings and nurses coming in to take vitals. I didn't put her in her bassinet all night, she slept in my arms very well.
Early this morning the cardiologist came in and told us that the medications just weren't working. For over 24 hours she was in SVT and we had tried all 3 of the medications he really wanted to see work. They are the safest medications available for her condition and they know there are no great side effects to even think about. So he very reluctantly started her on another medication called Amiodarone, this drug is not the safest but is the most effective. They have to keep a close eye on the patient the whole time they're on it to make sure they don't develop liver or thyroid issues (See Side Effects). It's kind of a scary drug, her Doctor doesn't like it but it's kind of one of the last oral drugs she can get. We started her on it through the IV around 10:30 this morning, within an hour she came out of SVT, it worked way faster than we all hoped for. She's now been out of SVT for about 2 hours, seems like it's been longer than that, lol! Today's going to be a long day.
So what do we expect now? They have to keep her on the IV drip of the medication for about 24 hours, then in the morning around 11:00 or so they'll give her her first dose of it orally and then they'll slowly wean her off the IV and onto the oral version. After that they have to keep her here in PCMC for about 5 days on observation drawing blood and doing periodic EKG's to keep an eye on how the drug is affecting her system. So it's officially looking like we'll be here until Tuesday at the earliest. At least once they take her off the IV tomorrow they'll move her to a regular care room, which are much more comfortable and private.
Long term we will have to bring her back in a few weeks for testing to make sure everything is still working right. We'll have to keep her on the drug until 6 months or 1 year, depending on when she's ready to keep her heart at normal rhythm without it. And we'll have to make clinical visits about every 2 months to check her out and test everything. They're confidant she'll only need the drug until 6 months and then she'll be fine for good on her own. We can only pray...
So, now we just sit and wait. We have to keep praying she'll stay out of SVT, there's still a chance she could go back into it and the drug could fail like the others but we are all confident that this will not be the case. Miss K will stay in normal rhythm and will come home next Tuesday or so.
Keep praying with us that this will all be over soon! Once we're out of PICU visitors are more than welcome, if you live near by and would like to come see us feel free, just make sure you call us and give us a heads up!
We want to thank all of you for all your prayers and support thus far. We have felt a huge outpooring of love from all of you and it has helped so much. Thank you!
On a lighter note, she is doing quite well with this, I think I have failed to mention this much being pretty occupied with the stressful info. She has a very healthy color for a baby in SVT, her blood pressure has stayed very good this whole time and she has kept eating really well (except when she's recently had medications {I don't blame her, lol} and today putting her under stress and tiring her out going in and out of SVT). And she is gaining weight like a champ, she left the hospital last week weighing about an ounce more than birth weight, she never lost any weight after birth, and she weighed 5 lbs 14 oz on Friday and was 19 1/2 inches long. Monday night when we arrived here they weighed her in at 6 lbs 4 oz, she hasn't been weighed since Tuesday but I'm sure she's still just gaining away. She is filling out and getting a little pudgy :o). The Doctors are really impressed with her. And every Doctor and nurse can't help but coo over her and touch her hair, if she's in the middle of a feeding when someone new comes in they are usually very disappointed that they don't get to take a peek at the very adorable baby in room 2311, they usually come back within an hour just to take a peek at her when she's done feeding, lol. She's got everyone here wrapped around her little finger, including Mommy and Daddy.
I've been very reluctant to take photos because I really don't want to remember this hell but I've realized that she is still growing and that I need to document that good stuff and have it to remember instead of skipping out on a whole week of her just because we're in a hospital with a bunch of tubes and "stickers" stuck to her.
I'm working on getting the local LDS branch representatives up here to give her a blessing, and maybe Daddy and I one as well, I feel it will help all of us. She has had 2 blessings, so no worries! We haven't left that important part of her healing out, lol! She had one last week in UVRMC the morning we went home and then she got another one from her Uncle Monday night here in the ER. My wonderful father-in-law gave me a blessing as well that night and it helped.
I've seen on Facebook that some of my family is going to have a fast for Miss K this Sat-Sun. and is inviting everyone to join in if you want to. I will be fasting for as long as a nursing mom can, Daddy will be fasting the whole time with everyone else. Thank you so much to all of you for starting this. Anyone who feels like they want/need to do something for us, just know that praying is pretty much all we can ask our family and friends to do. Phone calls and texts are great but please don't be offended if we don't answer, sometimes it's too hard for me to talk on the phone without breaking down and I try to save myself the crying time, lol, so leave a message and when I feel together enough I'll surely try calling back.
As far as Roo goes, he's with my parents since my mom was helping me at our house when this all happened and she just packed him up and took him home to her house. Those of you who feel you want to watch him for a while, please understand that we feel it's best for him to stay where he is. If we bounce him around place to place it will put him under stress and probably break him, as of right now he's being really tough and hasn't cried a tear yet, we really don't want him to know anything is wrong. He's happy and doing wonderful at my parents house playing on the farm outside and causing trouble inside tearing up the house, lol! But he's definitely comfortable, sticking to his usual schedule and routine most of the time, and in the best place for now.
Again, we are so thankful for all the love and support from all of you!
We spent a long stressful Day Wednesday here in PICU with her, they tried several methods and several different medications to get her out of SVT but she stayed in it. She was very fussy and was only happy while being held all day. Daddy left me and went to work for the morning, I had to endure a horrible round of Adenosine again, which they did to her twice within minutes of each other, and we had no good results. I wasn't online all day because I was holding her and cuddling all day, I did get a short 1 hour nap at some point when she let me put her down, but then the Doctors all came in and woke me up to chat. I was so relieved when Daddy came back to take care of the two of us. If not for him I would be starving because they don't bring you food here and I can't bring myself to leave her without one of us sitting with her, even for a minute. He also keeps me calm, when he's not here I break down and can't stop crying.
Wednesday night my parents brought Roo up to see us. We spent an hour with them eating dinner in the cafeteria and then we brought my parents up to Miss K's "room" and left them sitting with her for about 45 minutes while we went out and spent some time with Roo just the 3 of us. Boy do we miss that kid! He was full of mischief but cute as can be. I talked the nurse in PICU into allowing him to come in and see "baby sister" for just a minute (they are supposed to be over the age of 2 and have had their 2 year immunizations, Roo is a week from that). He was so excited when I asked him if he wanted to come see his baby sister, he couldn't quit saying "see baby sister?" all the way into the PICU. He was very shy of her when he got here, I think he was very confused by all the wires and tubes hooked up to her, but he quickly got over it and wanted down to push buttons and cause trouble, lol! He got to come back and see her again just before they left to go home. It was so great to see him for a minute, I wish we could have spent the whole night and day with him, even better would have been to go home with him for good, it breaks my heart being away from my baby boy. I miss him so much even the thought of him makes me break into tears, I was almost inconsolable last night after he left. I hate this torn between two kids thing.
Wednesday night was a little less stressful for us but still hard to get through. Miss K stayed in SVT through the night, stressing us out big time. But we were able to get a few hours of sleep in here and there between feedings and nurses coming in to take vitals. I didn't put her in her bassinet all night, she slept in my arms very well.
Early this morning the cardiologist came in and told us that the medications just weren't working. For over 24 hours she was in SVT and we had tried all 3 of the medications he really wanted to see work. They are the safest medications available for her condition and they know there are no great side effects to even think about. So he very reluctantly started her on another medication called Amiodarone, this drug is not the safest but is the most effective. They have to keep a close eye on the patient the whole time they're on it to make sure they don't develop liver or thyroid issues (See Side Effects). It's kind of a scary drug, her Doctor doesn't like it but it's kind of one of the last oral drugs she can get. We started her on it through the IV around 10:30 this morning, within an hour she came out of SVT, it worked way faster than we all hoped for. She's now been out of SVT for about 2 hours, seems like it's been longer than that, lol! Today's going to be a long day.
So what do we expect now? They have to keep her on the IV drip of the medication for about 24 hours, then in the morning around 11:00 or so they'll give her her first dose of it orally and then they'll slowly wean her off the IV and onto the oral version. After that they have to keep her here in PCMC for about 5 days on observation drawing blood and doing periodic EKG's to keep an eye on how the drug is affecting her system. So it's officially looking like we'll be here until Tuesday at the earliest. At least once they take her off the IV tomorrow they'll move her to a regular care room, which are much more comfortable and private.
Long term we will have to bring her back in a few weeks for testing to make sure everything is still working right. We'll have to keep her on the drug until 6 months or 1 year, depending on when she's ready to keep her heart at normal rhythm without it. And we'll have to make clinical visits about every 2 months to check her out and test everything. They're confidant she'll only need the drug until 6 months and then she'll be fine for good on her own. We can only pray...
So, now we just sit and wait. We have to keep praying she'll stay out of SVT, there's still a chance she could go back into it and the drug could fail like the others but we are all confident that this will not be the case. Miss K will stay in normal rhythm and will come home next Tuesday or so.
Keep praying with us that this will all be over soon! Once we're out of PICU visitors are more than welcome, if you live near by and would like to come see us feel free, just make sure you call us and give us a heads up!
We want to thank all of you for all your prayers and support thus far. We have felt a huge outpooring of love from all of you and it has helped so much. Thank you!
8-18-11 A New Report:
Miss K has been very frustrating today. We started her on that new medication this morning as I reported before. She only stayed out of SVT for 3 hours then went back in. She then started jumping in and out of it sporadically, literally one minute she would be in it and the next out, for about an hour or two. She got herself out of SVT and stayed out for about half an hour then went back in again and continued with the sporadic in and out again for about another hour. At about 5:00 she came out again and stayed out for another half hour and is currently in and out of it again. We had to up her dose of the Amiodarone drip, it seems to have worked a little bit. They checked her potassium levels earlier today and they were too high so we're currently getting ready to draw more blood, yet again (poor baby!), and have it checked again, it really needs to go down. Her blood pressure is getting a little low as well, her nurse isn't comfortable with how low it's getting so she's sending in blood for 2 other tests as well to make sure Miss K is still OK. They've just upped her dose of Amiodarone drip yet again, she just won't stop going in and out of SVT. She's been a very sleepy little girl today, this whole in and out of SVT thing is surely wearing her out. She has had a few minutes here and there of awake and alert time but definitely not half as much as she had yesterday. She's slowed down on the eating today as well. And since she's not eating too well today I'm usually left with pumping at least one side after she finishes eating. Since we're going to be here a while I've decided to have Daddy bring some bottles back with him tonight and we're going to start trying to get her to take one well, if she will then I will get a chance to leave the hospital here and there to keep from going insane. On a lighter note, she is doing quite well with this, I think I have failed to mention this much being pretty occupied with the stressful info. She has a very healthy color for a baby in SVT, her blood pressure has stayed very good this whole time and she has kept eating really well (except when she's recently had medications {I don't blame her, lol} and today putting her under stress and tiring her out going in and out of SVT). And she is gaining weight like a champ, she left the hospital last week weighing about an ounce more than birth weight, she never lost any weight after birth, and she weighed 5 lbs 14 oz on Friday and was 19 1/2 inches long. Monday night when we arrived here they weighed her in at 6 lbs 4 oz, she hasn't been weighed since Tuesday but I'm sure she's still just gaining away. She is filling out and getting a little pudgy :o). The Doctors are really impressed with her. And every Doctor and nurse can't help but coo over her and touch her hair, if she's in the middle of a feeding when someone new comes in they are usually very disappointed that they don't get to take a peek at the very adorable baby in room 2311, they usually come back within an hour just to take a peek at her when she's done feeding, lol. She's got everyone here wrapped around her little finger, including Mommy and Daddy.
I've been very reluctant to take photos because I really don't want to remember this hell but I've realized that she is still growing and that I need to document that good stuff and have it to remember instead of skipping out on a whole week of her just because we're in a hospital with a bunch of tubes and "stickers" stuck to her.
I'm working on getting the local LDS branch representatives up here to give her a blessing, and maybe Daddy and I one as well, I feel it will help all of us. She has had 2 blessings, so no worries! We haven't left that important part of her healing out, lol! She had one last week in UVRMC the morning we went home and then she got another one from her Uncle Monday night here in the ER. My wonderful father-in-law gave me a blessing as well that night and it helped.
I've seen on Facebook that some of my family is going to have a fast for Miss K this Sat-Sun. and is inviting everyone to join in if you want to. I will be fasting for as long as a nursing mom can, Daddy will be fasting the whole time with everyone else. Thank you so much to all of you for starting this. Anyone who feels like they want/need to do something for us, just know that praying is pretty much all we can ask our family and friends to do. Phone calls and texts are great but please don't be offended if we don't answer, sometimes it's too hard for me to talk on the phone without breaking down and I try to save myself the crying time, lol, so leave a message and when I feel together enough I'll surely try calling back.
As far as Roo goes, he's with my parents since my mom was helping me at our house when this all happened and she just packed him up and took him home to her house. Those of you who feel you want to watch him for a while, please understand that we feel it's best for him to stay where he is. If we bounce him around place to place it will put him under stress and probably break him, as of right now he's being really tough and hasn't cried a tear yet, we really don't want him to know anything is wrong. He's happy and doing wonderful at my parents house playing on the farm outside and causing trouble inside tearing up the house, lol! But he's definitely comfortable, sticking to his usual schedule and routine most of the time, and in the best place for now.
Again, we are so thankful for all the love and support from all of you!
Subscribe to:
Posts (Atom)