Bradycardic Episodes Update...

We finally got a call from Miss K's EP Cardiologist, it took a few days because of our state holiday and then I was out of town and outside of mobile service so I didn't get to speak with him directly, I just received the message this afternoon.  The Holter Monitor reading came in and he looked through it thoroughly, Miss K does indeed drop her heart rate to the low 50's very occasionally but never for more than a second or so, he said the longest her heart rate was in the 50's was about 1.3 seconds and her average heart rate was 92 BPM.  This is all good, everything he expects to see in a child taking 2 Beta Blockers.

I am relieved to hear that she is OK and no SVT was caught with the monitor either, such a huge relief!

As of right now she is to stay on the same 3.2 mL 3x daily Propanolol and 1.2 mL 2x daily Digoxin.  She will be seeing him in September for a follow up, I am a bit disappointed to be taking her in since I had hoped to stay away from a visit for a year but her EP Cardiologist feels he should see her at the 6 month mark to see how things are going and talk about future medication changes.  He likes to have a game plan and it's time to talk about what we need to do in the future.

On a side note, last week with all the craziness of packing to go on a family camping trip I completely forgot to issue Miss K's afternoon dose of Propanolol Tuesday.  We waited on egg shells the next few days, while camping, expecting an SVT episode because she has always had SVT after skipping a dose, I was terrified of being out in the middle of nowhere with no cell phone service and 30 minutes from the nearest hospital knowing that we had skipped a dose and SVT was possibly inevitable.  We checked her heart rate constantly throughout the week and weekend and were extremely shocked to never catch any SVT!  I am amazed at how far our sweet little girl has come.  She is doing so great and kicking her PJRT in the butt :).

And while camping I noticed at least 1 new molar coming in, this means the cause of her tired moments and off times was most likely teething, I'm so glad to have found a reason for her to have been acting out of sorts!

Our dirty little princess enjoying playing in the dirt while camping this past weekend.

Cardiology Visit

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

Miss K first...

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

Little D...

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

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

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

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!

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!