The delta wave is back...

We had Sweet Pea’s appointment at the Mayo today to talk next steps. The delta wave is back on her EKG so since it went dormant and reappeared the specialist said it's very unlikely she will outgrow this on her own, he made a special note to say sometimes they surprise us. So I'm ready to move on from the dream that she will outgrow it and on to the living with it until she can have an ablation. He said by the looks of her EKG it also appears her extra pathway is on the left side of heart which solidifies the fact that it's way too dangerous to ablate before her 4th birthday. He said because of the likely location of the extra pathway they have to insert the catheter between the left and right side of the heart, there's a greater risk for piercing one of the lobes of the heart so they need to make sure she's as big and strong as possible for the procedure. They took blood today as usual (it was not an easy stick this time either so that sucked!) and based on the level in her blood the specialist is going to calculate a new mg/kilo ration to base her dose changes on. She was 17lbs 15oz and 26 3/4 inches long today, we'll see what these numbers are at the pediatrician's office on Thursday, she has her 9 month check-up then.

Another trip to the ER

Well unfortunately we ended in the ER with Sweet Pea on Monday night, she had another episode and needed to be converted. So I guess the WPW went concealed instead of resolving. We have a check up at the Mayo on the 19th and we'll talk new game plan for her. For now we up'd her meds to match her weight again and hopefully that'll keep the episodes at bay. It's been so long since she had one that I forgot how stressful it can be! The hard part is that she doesn't really tell us she's in SVT because she was still smiling and Little Man was making her laugh all the way to the hospital. The only sign was that was kind of clingy and didn't eat much on Monday. So much for her telling us when she's in it when she gets older! I tell ya, she's a trooper that one! That's it for now, will write more later!

Update and Sickies

Well it's been awhile since I've done an update to say we've been busy is an understatement. Everyone in our house has been sick, Sweet Pea had pneumonia and then Little Man got sick and was sick for two weeks and then it was my turn and I'm still recovering.

To update on Sweet Pea just before she had her pneumonia I had heard the skip in her heartbeat come back, I hadn't heard that since my non-stress tests 3 weeks before I had her. So naturally I was kind of concerned and called the cardiologist, he up'd her dose of propranolol to 10mg every 8 hours since she was only 1 pound from her next dose increase anyways. Then she got pneumonia shortly after which she ran a 103 fever for 4 days and freaked me out, I don't think I've checked her heart rate so much since her episodes first started in February! But we survived that and she's up to par now.

We had our check-up with the EP last Monday and got some great news! First of all they did a sedated echo, the first since her fetal echo unless they did one the first stay in the hospital I didn't know about and everything still looked great. It was nice having her sedated because they did the EKG and blood draw while she was asleep which was nice because the lady doing the blood draw was an idiot! She finally called in two other nurses and they got it first time. It makes me mad that they poke her so many times before admitting they can't do it! Anyways, we met with the EP and he said they no longer see the delta wave on her EKG meaning one of two things, either the extra pathway has stopped conducting electricity or the WPW has become concealed. So we are cautiously optimistic that the extra pathway no longer conducts electricity meaning her WPW has resolved on it's own. We are going to not up her dose at all and reassess at 9 months when we will try to wean her off the propranolol. I'm scared to death of all this because it's been great not having any episodes for months now, almost like she's a normal baby. :) Anyways, that's our good news I hope, guess we wait and see what the next few months brings.
Daddy, Mommy, Little Man and Sweet Pea

Two Month Mayo Follow-up

Well we had Sweet Pea’s 2 month follow-up at the Mayo today (can't believe it's been more than 2 months since her last episode!) Everything went great and the doctor said she's growing great and doing great so we'll just keep following this plan. :) He said we may try to wean her off the meds at 6 to 9 months to see how she does. If she doesn't have an episode then great and we'll just let her keeping growing big and strong for the surgery, if she does have an episode then we'll obviously go back on the meds. It's scary to think of her off her meds but I know it's best since the meds themselves can bring other nasty side effects. So we go back to the Mayo at 6 months to see how things are going and we only have to do weight checks every 6 weeks which is also great. :)

We also had Little Man checked for WPW and he thankfully does not have it so we are grateful to God for that blessing. Anyways, it's nice to not have anything exciting to put out here. I hope everyone is doing well and we wish you all the best.
Love,
Daddy, Mommy, Little Man and Sweet Pea

Weight Check

Sweet Pea was in for a quick weight check and she was 12lbs 13oz. Not too much new and exciting to talk about which is GREAT. We have her follow-up at the Mayo next Friday and I can't wait to see what happens.

Our little girl is getting so big!

Our little girl is getting so big! We brought her in for her weight check yesterday and she is officially 12lbs 2oz, holy cow! So we've up'd her dose of Propranolol. She starts daycare Monday and personally I'm terrified since I won't be there. I know it's best for everyone right (we like to eat after all) but this transition is going to be a bit difficult. I just want to get through next week at this point. Then she has her follow-up down at the Mayo on the 25th of Mayo and hopefully that goes well. It's been great not having any real news to report here!!! Well that's it for now, hope everyone is doing well, God bless!

Another update

Dr. Porter (the EP) called yesterday to let us know her levels were good and we should increase her dose when she hits 12lbs. He's also sending out a letter to go over how we should handle further dose increases (ie. how many milligrams per kilo). I thought for sure she'd be at 12lbs by today's weight check but she proved me wrong, she's 11lbs 10.5oz. So probably next week and then I think we can go to weight checks bi-weekly or even every 4 weeks depending on what weight the next dose increase should be since she's averaging an ounce a day gain. That's the medical update.

For other news, she's trying so darn hard to roll over to her belly, if only she could get the arm underneath to cooperate! She's smiling up a storm and on the verge of laughing. I can't believe she's 2 1/2 months old already! We thank god every day for our precious gift. :)

Quick Update

Just a quick update, Sweet Pea had her weight check on Wednesday and she's up to 11lbs 5oz so she's growing like a weed. Also, we got her trough levels back today from the blood draw last Thursday and her level was 110. So that being said, therapeutic range is 50 to 100. I don't know if they will want to adjust down her meds or what they'll do from here. The bad thing is that the lab took so darn long that those levels are a week old already. I have no patience. :) I guess we just wait and see what the specialist says.

Check-up

We got home from the hospital Thursday night and it's been great being home, we've done all the running that needed to wait while we were in the hospital. We had Sweet Pea’s 2 month checkup yesterday. She was 10lbs 12oz and 23 inches, she was 7lbs 4oz and 19.5 inches at birth so she's growing great! I explained our new plan of action with the switch to Mayo and our pediatrician was completely supportive so that's great. She has to go back Thursday for another trough level check of the drug and another blood sugar check too just to be sure. He said she looked great though and is so impressed at her growth rate given everything she's been through the last two months. She got 4 shots though, that was rough, just 4 more pokes for the poor baby! Well that's our update. We hope everyone is doing well. Thanks again for keeping us in your thoughts and prayers!

Finally going home!

Well it looks like we get to go home, yay! They wanted her levels to be between 50 and 100 and it came back at 61. :) We are just waiting for the nurse to come unhook all the cords and take out the IV. I think the EP (her specialist) wanted to stop by and see us before we leave too. Now we just need to follow up for weight checks each week to know when we need to up her dose based on her weight. We also need to do another blood draw in a week to make sure her levels are still where they should be. Other then that we have a follow-up in 2 months with the EP down here but hopefully these meds keep her episode free.

Thank you everyone for all your thoughts and prayers, you have no idea how much it means to all of us!

Ready to go home

Well my Daddy and Little Man trucked on down here to come pick us up today when the cardio on duty delivered the bad news. Sweet Pea’s trough levels in her blood were undetectable so they had to up her dose. We are going from 5mg to 7mg and they are going to do a redraw tonight so maybe we'll get to go home tomorrow. I sure hope so, I'm ready to take my baby home already and enjoy her like normal families do! At least they are being very careful and I'm greatful that they are over cautious. The whole point to keep us this long is to make sure there is enough drug in her system to keep us out of the hospital in the long run so for that I'm greatful, I'm just tired of being stuck here. :(

Okay the nurse just came to give some more bad news. Her IV access wiggled it's way out this morning so we took it out and took her off the monitors since she was going to come home. Well since we are staying and don't need high level monitoring they are going to move us to a regular ped room/floor. The bad part is that they want her to have iv access down there just in case. She has such a horrible time getting an IV and it requires at least 5 pokes no exaggeration, my poor baby! The nurse is going to try to negotiate either keeping us in this room so we can avoid the IV or going to a regular room without the IV, we'll see.
Nope, she just came back, they do need IV access. Maybe I'm being a coward but I'm going to duck out for this one, I can't watch my baby go through that again!

Hopefully we get to come home tomorrow, I just want to take my baby home!

Progress but tired

I just had a few minutes and thought I'd put a quick update up. So far everything is going well on the new drug (Propranolol) other than one small side effect, she was having trouble sleeping last night and today. They took her blood sugar today which was 105 which I'm told is great (low blood sugar can be a side effect of the drug) and I found out that her QT interval on her EKG yesterday was considerably shorter then before so that's great news. Tomorrow they plan to take blood and make sure she has the appropriate level of medicine so they can adjust if necessary. If everything continues this well we hope to be home Wednesday and to not have to come back!

Hopefully the sleeping thing straightens out as I'm sure some, if not most, of it is coming from being stuck in the hospital yet again. She's been a trooper though and I got a lot of smiles and coos today which is the up side to her not sleeping. The down side however, is no time to call or email folks or update things here, sorry!

Well I'm going to try to get some rest while I can, will update more later.

Off to the Mayo clinic

We are heading out to the Mayo Hospital this morning; we'll be in for 3 to 5 days. Please pray all goes well and this new drug works.

Getting a second opinion

We went to the Mayo and met with the Electrophysiologist there for a second opinion. The Dr. there has some different view points on medication. Currently the medicine she is on is a newer one. The new Dr. prefers to use something that has been used longer, that has less side effects since it's not as strong, one they have the ability to draw blood and check serum levels and one he feels more comfortable with and since he's been doing this since 1972 we feel comfortable with his opinion. So we are switching our care to the Mayo. The new plan is to admit Sweet Pea to their hospital and they will observe her while they wean her off the Sotalol and onto the Propanolol and make sure all goes well.

Another episode, need faith...

We went for dinner and a play date at some friends house. After Tuesday night's episode we've decided to check Sweet Pea’s heart rate at each diaper change. Around 7:00pm I changed her diaper and her heart rate sounded fine. She was pretty cranky and wanting to eat but not eating much again so I kind of knew something was up. We got home about 9:00pm and put her on the changing table and checked her heart rate again and it was racing again. So off to the ER, another 10+ pokes and the two doses of Adenosine later she was converted. They decided to send us via ambulance back downtown since this was the 3rd episode in 3 weeks. We spent another 3 days at the U of M Children's hospital. They increased her dose of Sotalol again.

The only issue with that is that the other problem that can be caused by this medicine is a long QT interval which can cause torse de pointes, another type of arrhythmia that is even more dangerous.

Basically, the QT interval is the time it takes for the heart to charge in-between beats. For example, when you see someone get shocked on tv it takes time for the paddles to recharge between shocks. In the heart this process occurs naturally and the time it takes to recharge between shocks (or beats in a normal heart) is the QT interval.

The last EKG before we left Tuesday showed a QT interval of 500 to 510 and they said she can safely have one up to 515. So if she has another episode we'll be talking different medications or a combination of medications.
We've decided to go to the Mayo for a second opinion just to be sure we are doing everything we can. Our appointment there is Friday March 23rd, I'll add an update after that appointment.

Please pray that we can at least stay episode free for some time. Her cardiologist said the short term goal is two weeks without an episode and the ultimate goal is to have an episode no more than every 3 months. I just pray that we can get there and fast, I don't know how much more a mommy can watch her baby go through this! God gives us the strength we need; I just need to rely on that now.

Plan of attack

Spoke with the cardiologist and we increased her dose of Sotalol.

Another espisode

Sweet Pea had another SVT so off to the ER we went. Again they had to poke her 10+ times to get the IV in so they could administer the Adenisone and break the SVT. She was at 296 bpm again so very high which makes getting a good vein difficult. Since they were able to convert her back they sent us home with instructions to speak with the cardiologist in the morning.

Sotalol Home

They started Sweet Pea on Sotalol (a beta blocker) but it can have other adverse effects on her heart rhythmn so they did a repeat EKG after 48 hours on the medicine and all looked well so the sent us home.

The beginning...

Sweet Pea was diagnosed with Wolf-Parkinson-White Syndrome at 3 weeks old. WPW is when the heart has an extra accessory pathway (electrical path) which can cause a fast heart rate called SVT (super ventricular tachycardia). For more information on WPW you can visit: http://www.americanheart.org/presenter.jhtml?identifier=4785
When I was pregnant we found a heart arrhythmia that showed skips (PAC's) in her heart rate which is very common and most babies outgrow by 6 weeks. I had weekly non-stress tests to be sure the skips didn't develop into SVT's but the arrhythmia seemed to have resolved a few weeks before her birth.
At birth Sweet Pea’s heart rate seemed to be normal and regular, no one thought to order an EKG. The first two weeks after birth she would have episodes where she would turn blueish all over but would color back up after we snuggled her under blankets for a bit. At her two week check-up we mentioned it to the pediatrician and he said she was probably getting cold. I knew this was wasn't right but I thought the doctor knew best.
The night of the 24th of February she had turned blueish all over again and I felt what I thought was her heart pounding but it was so fast it felt like a hummingbird in there. So I called the pediatrician oncall. He told me first of all that it was impossible to count her heart rate if it was going as fast as I said it was (I timed it to be about 300bpm) and since she had started to kind of pink back up that we should take her in if she turns blueish again. He said it was not normal for her to do that but said it wouldn't help to bring her in if she wasn't blue at the time, he really struggled with this.
Overnight that night she didn't eat much at all and was pretty cranky when she was awake, she also slept straight through feedings which is not normal. That morning when we got up she was blueish and worse than ever so off to the ER we went. Sure enough her heart rate was 298, they took forever and poked her 10 + times but finally got an IV in and with a double dose of Adenosine she was converted (they got her heart rate back to normal).
Since we just had a snow storm and an ambulance wouldn’t have been the quickest/safest route, she was air lifted downtown to the U of M Children's hospital where we spent the next 4 days waiting for the final diagnosis of Wolf-Parkinson-White Syndrome.