With all this heart talk can you believe that since October 2007 we have lived like we do not have a cardiac baby. They put Ella on medication that regulated things, she never went into SVT. It was like the miracle drug until she got ahold of it. In July 2009 Miss Ella got ahold of her medication and drank it….. almost died. It was the scariest moment of my life! You can read all about that {HERE}. After her overdose we ended up taking her off of all medications to see how she would do.


Ella has had this horrible cold since Friday of last week. She had high fevers, horrible cough, and all around it has just down right SUCKED. Yesterday this cold took a different turn for us, and right now I’m just extremely thankful that I became aware in time of what was going on.


She came up and hugged me, I could feel her heart pounding out of her chest. I asked Gino where the stethoscope was and then listened. I told him to get up and come listen, and of course he thought I was overreacting, but her heart was FAST. He wanted her taken in immediately, so I went upstairs, got dressed, got Ella some clothes and called the doctor. They had me come down and Ella was still in good spirits and acting like nothing was wrong. This is why I believe we recognized this right away, because she finally started getting pale around the time that we got there.


The doctor checked her heart rate and with the first machine they couldn’t pick anything up, and that’s because that machine only monitors up to 200 beats per minute. Well, there’s a huge sign she’s in SVT. So they get another device and were picking it up at around 250 BPM. So, they were already prepared with 2 bags of ice and that’s when they suffocated her with them.


Oh, my poor, poor baby girl. The last time they did this she was only a couple of months old, this time she’s 2 1/2! She was screaming and saying COLD! My heart was breaking, but thankfully her heart was shocked back into normalcy.


In the event that the ice didn’t work, she would have had to be admitted, and IV stuck into her (which is EXTREMELY difficult to do when in SVT) and had adenosine pushed into her veins to try to kick her heart into normalcy. In the event that doesn’t work they’ve had to get the crash cart and shock her back into normalcy that way. The last time they did that she was 7 weeks old and her organs were shutting down, they had no choice.


I’m relieved that Ella is back on her medication, so hopefully we don’t have to go through this again. This time the medication is being kept up VERY HIGH. Think above the refrigerator high… there will be no more overdoses on flecainide!


So, during CHD week I was reminded that I do indeed have a cardiac baby.  And while most days she seems like the healthiest, most vibrant little toddler out there, she’s not.  But this condition makes her that much more special, and has helped me to grow even more as a mother.

Both pictures were taken after she was converted out of SVT ~ we are so blessed.

Today my heart has been heavy with prayer for a special little boy. Stellan is fighting for his life, and fighting hard as I type this out. As you all know, I have a cardiac baby. I have sat next to her side as she’s been on ventilators breathing for her, because she had been in SVT for so long that her organs began to start shutting down.

The feelings that I felt will never be able to be explained in words. It’s so much more than that. When you look at the heart monitors and see that your baby’s heart rate is going above 200 and reach highs so high that the monitors can’t even read them you drop to your knees and you pray. You pray like you’ve never prayed before.

I am so grateful that I have not experienced Ella going into SVT for 1 year, 9 months and 2 days. I have gotten to the point where I’m not a mom carrying a stethoscope in diaper bag, because it’s been so long since there has been a problem. You can read about Ella’s story {HERE}

Stellan can’t get out of SVT. His heart rate is 220 + and has been going this fast now for 3 days and counting. How he has survived this long is probably beyond everybody, but he is surviving. I’m sure it has to do with the MANY, MANY, MANY prayers that are going on for Stellan. I have spent my night and day praying for this baby boy, as I know thousands have. You can read all about Stellan {HERE}

I’m taking this moment to say that I am scared to death of what Ella has. I am scared to death that one day she’s going to go into SVT and she’s not going to come out of it. I recently almost lost her to something so stupid and preventable, what if something I can’t prevent happens. You know what, I’d blame her doctors. I do not like my daughter’s cardiologist. What cardiologist in their right mind would take a toddler off of her heart medicine to “see” if she possibly doesn’t go into SVT. Yup, that’s what her great cardiologist wanted to do. Well, now Ella is on a different medication since her overdose and it happens to be the same medication that didn’t work for her.

Now I am just another mom carrying a Stethoscope in her diaper bag, praying that I never hear that fast heart beat EVER again.

And now, I’m just another mom praying for Stellan and hoping that my worst fear ceases in him and that he gets out of SVT and that he can give his mom another smile, another laugh, another day, another year ~ I hope she gets an entire lifetime out of him and I hope I get a get a lifetime out my Ella.

This picture is of Ella when she was going through what Stellan is going through right now. It is a picture I sometimes stare at and thank God that my little girl that was once laying lifeless in the PICU is now an outgoing, precious little girl that has stolen my heart in ways that I can’t explain.

Mckmama, Stellan & family ~ I’m praying so hard for you. Hugs for another SVT baby family. We’re here supporting you 110%…. I know that Stellan will pull out of this, because he is beyond a fighter ~ he is so awesome.

Every morning we as moms wake up to start our day. For the most of us these days follow our typical schedule and by the end of the day we are laying in our beds thanking God for one more day on this earth, for having healthy children, and for all of the many blessings that we are blessed with. After these prayers we snuggle in tightly and and wake up in the morning to repeat. However, during the day there were many moments of frustration over bills, housework, dinner, and the little every day things of life.

I am one of these moms. I have a cardiac baby, but nothing that has caused any issues since she was 12 weeks old. I wake up every day grateful for the blessing of being able to have a typical day. Being able to snuggle in my bed at night thankful for every blessing that I am blessed with. The only worry I am faced with is how crowded my bed has become, because a certain little toddler girl doesn’t agree with me on the fact that she should remain in her toddler, princess bed at night ~ even if it is literally RIGHT NEXT TO MOMMY.

Yesterday my day started out just like any other day. I woke up and had no idea what major turn my day would be taking. Ella has a condition called Wolf-Parkinson-White syndrome. You can read all about her story with that {HERE}. Ella is on a medication to regulate this heart problem called Flecainide, which is a powerful drug that regulates her heart beat. It keeps it from going fast.

Little Miss Ella decided that she was going to pull out the drawers and climb up to get her medicine off of the counter. Her child proof medicine cap is not on it. It’s a blue cap that you can pull the top off to put the syringe in to make it easier to fill it. Now, I will refuse this easier cap. She drank her medicine. We don’t know exactly how much, but pretty quickly she was out of it and having a hard time keeping her head up and eyes open.

We jumped in the car and I drove about 90 to the hospital while my husband kept slapping her face to keep her awake. I was praying and praying and praying that she would be okay. We went to the hospital in Ashland, because it’s closer than Rogue Valley. Once they got the IV in they had an ambulance show up to transport her to RVMC where she could be in the PICU. Her BP was low, her HR was low, but we were all thinking that maybe she just needed to sleep this medicine off and she would be okay.

Boy, were we all wrong. Upon arrival to RVMC she finally woke up and sat up and was crying telling us, “All done! All done!” while doing the sign language for all done as well. I literally could feel my heart aching inside of my chest for my precious little princess. Right then she started to throw up, and in the middle of throwing up her eyes got big and bulgy and it seemed like she wasn’t breathing. The nurse grabbed her and I FREAKED! I ran out of the room crying hysterically, dropping down and praying like I’ve never prayed before. All I could hear was “CALL IT! CALL IT!” then CODE something being called. Then my head started spinning and in my mind I knew she was dying at that moment.

At this point I was sitting behind the nurse’s desk with my head in my hand praying for God to just please not take my precious baby girl away from me. I didn’t want to move, because I didn’t want to feel the pain that was going to hit me the minute I realized she was gone.

They had a lady from social services and come hug me so tightly and tell me that she’s breathing on her own. Her HR is low, but she’s breathing on her own. They were trying to get me to slow down my breathing because I was on the verge of hyperventilating. I’d never been more happy when they told me, “Mom, she’s waking up and she needs to see you right now.” I went over and I could tell that she recognized me, and when she said, “All done!” I was so relieved that the seizure didn’t defeat her!

After this we were informed that Ella would be mediflighted to Portland where they can keep an extra close eye on her heart. This medication messed up the rythmia of her heart and things were just not looking great.

At 2am the Panda team from Portland had arrived and Ella and I got inside of the ambulance and loaded up on a tiny airplane and got to Doernbecher Children’s Hospital around 4am. Ever since we’ve been here she’s gotten better and better. As of right now we’re planning a morning release. She had another EKG done and we haven’t received the results, but I’m praying that everything is back to normal!

Moments like these make us stop and appreciate what we have. Sometimes I might take everyday for granted, because I wake up and do the same thing every day. My days run together, but when life throws you a curve ball like this, you clutch your heart and thank God for every second you have with the ones you love. You NEVER know when you wake up in the morning what events will take.

Instead of complaining and getting stressed about the bills, the house, the mess, dinner….. just take a deep breath and be thankful that you are having one of those days when you’re doing the same thing you do every day, because it could be so much worse. You could be having to pray for the life of your child.

Let’s start off with her 1 year checkup. She’s highly advanced, growing perfectly and a devil child. Yes, my doctor called her a devil child. It’s okay though, he saved her life so he can call her whatever he’d like. She’s 21.5 lbs and 30 In. long.

Things she’s doing…. eating EVERYTHING. She actually is quite obsessed with food, which is a little bit of a worry for me, but she loves veggies which makes me happy! She’s learned how to throw fits, which is no fun. We’re going to try the ignoring technique and see if it works. She still loves to dance, so as soon as I can get her into dancing she’ll be in it. I think I already said before that she’s off the bottle ~ she’s been off of it for about a month (maybe a little more) now. She loves video games and loves to turn the video games off when people (daddy and brother) are playing them. She loves buttons to press, especially if they turn off things so that she can look at everyone with a satisfied smile.

Things Ella says: See, Jay, Benjamin (this is new), bye, mine, mama, dad, please, working on thank you, all done…. I think there’s more but I can’t think of any more.

I haven’t updated with a video or pictures lately and I’m a total loser for that. Sorry.

Cardiologist appointment was today and I must say her doctor is such a sweet man! The girl who was getting her stats was looking at her and said, has she been in this hospital before? Did she go into SVT? I told her, yeah, when she was 7 weeks old. She said that she was in the room when they shocked her heart. She said she’d never seen anything like it before. They weren’t very hopeful that day, because nothing would get her heart rate down. So scary.

Anyways, so the doctor came in and said that if the EKG comes back good then he wants me to cut her medicine in half for 1 week and then the following week completely stop. Then he’d want a holter monitor on her for 24 hours to see what her heart is up to. I got nervous. The thought of Ella not having her protective shielding medicine had my anxiety up a little. EKG showed there’s still WPW, so we just continue on with what we’re doing and we’ll be back to see him in 6 months.