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I expect the best.

This is a blog I’m unsure of how to begin.  It certainly isn’t good news…  But its news I want to share with my you.  I want to share the news because I realize we need support and as many good thoughts and prayers as everyone can muster, and because I really don’t want to be stuck explaining it over and over again.  I don’t want to start speaking to someone as though they know and realize they don’t, etc..

The 17th of November was one of the most anticipated days of my life!  We were going in for the 19 week ultrasound with high hopes of finding out the gender of our second child.  Kevin and I were both excited and he took the day off to ensure his presence.  Everything was normal.  They wanted to do all the measurements and details to check the baby’s health and well-being before anything else.  At the end, he went to get Kevin and I told the tech we really wanted to know the gender.  He plainly told me it probably wouldn’t be possible because of the baby’s position.  The tech left to check the pictures with the Radiologist—typical.  However, things changed quickly.  The Radiologist came into the room shortly after to see the ultrasound and baby himself—not typical.  Then he proceeded to explain to us the baby’s heart rate was extremely low.  It was worrisome and I needed to be in touch with my doctor immediately.  I asked what the heart rate was and it came in around 58 beats per minute.  Normal is from 120-180.

It’s amazing how quickly the gender didn’t matter…

We left and got in the truck.  I phoned my clinic right away and we drove over to see my doctor.  He checked the heart and heard 120.  He told not to panic (“yeah, right!”) and that he would be in touch with my Obstetrician by the end of the day to make a plan.

Friday passed into Saturday and I experienced the longest weekend of my life.

Monday morning I called the Obstetrician’s office only to discover he was out of the office for the week!  Arg!!  BUT I did talk to his receptionist and as luck would have it he was coming into the office to clear off his desk, and she would put my file at the top.

Within the hour he phoned me and expressed some concern and the idea to phone the specialists in Perinatology at the Foothills in Calgary.  That day I was fast tracked for an appointment in Calgary to figure out what’s happening.

…and…

I have Lupus.  Some people with Lupus carry an antibody called Anti-Ro.  I carry it.  There is a 1% chance that Anti-Ro will negatively affect the fetus’s heart causing Congenital Heart Block.  This has happened.

On Wednesday, Kevin and I drove to Calgary and endured some extensive ultrasound tests for the baby.  After an hour and a half with the tech we were taken to a small room to speak with the Pediatric Cardiologist.  This wonderful little lady, who reminded me a little of Aunt Paula, began to explain to us what we are facing.

As explained by the American Heart Lung and Blood Institute, and the Pediatric Cardiologist, “Heart block is a problem that occurs with the heart's electrical system. This system controls the rate and rhythm of heartbeats. ("Rate" refers to the number of times your heart beats in a minute. "Rhythm" refers to the pattern of regular or irregular pulses produced when the heart beats over time.)

With each heartbeat, an electrical signal spreads across the heart from the upper to the lower chambers. As it travels, the signal causes the heart to contract and pump blood. This process repeats with each new heartbeat.

Heart block occurs if the electrical signal is slowed or disrupted as it moves from the upper to the lower chambers of the heart.”

Essentially, Anti-Ro has killed the natural pacemaker in the bottom 2 ventricles and the top two chambers aren’t talking to the bottom two because the electrical signal from the top has nowhere to send it.

This is why sometimes the doctor can hear a strong heart rate; they hear the top two chambers.  If they have a low rate, they hear the bottom chambers.

What does this mean?

Considering the doctors don’t have many cases to go by, we are relying on their expertise of medication and knowledge of reasonably similar cases.  The main issue is ensuring the baby’s bottom chambers remain above 55 beats per minute.  If it goes below, I will go on a more radical medication to try to increase the baby’s pace, which I hear is very unpleasant for me.  If this does not work, I may ultimately lose the baby.

If we can maintain a steady heart rate, and my amniotic fluid stays up (which is also a little issue) then we can hold fast and the baby’s lungs can be strong enough for a possible caesarean at the University of Alberta, where the baby will most definitely undergo surgery for a pacemaker.

My hope is that the baby can maintain a heart rate above 55, hopefully well above, and I can carry this baby well past 32 to weeks to increase the chances of success.

I will travel to Calgary every Wednesday for at least the next 12 weeks for regular fetal assessments.  The countdown is on.  As of tomorrow, I will be 11 weeks closer to definitely saving this child.

I cried a lot last Wednesday.  Thursday was hard too.  But after thinking about it in great detail I have found a new resolve.

I go back to the question of “why me?”  Instead I ask, “why not me?”

I am strong.

Why not me?  I would totally rather be the one to carry this burden then watch one of my friends or family members go through this.  And it’s not that we need pity; we don’t.  Support?  Yes.

I expect the best possible outcome for this situation.  I will accept no less than best.  God only gives us what we can handle, and I’ve got my A game.

When we found out about all this I looked at Kevin and said, “It’s ok if the baby doesn’t have a strong heart—that we can help; just as long as they have a good heart.”

Will keep you posted.  If you have questions, don’t be afraid to ask.  I’m happy to share.

Comments

  1. Oh baby girl, I am so sorry to hear about this. However, knowing our family history, and my irradical heart issues, you CAN and WILL get through this strong and healthy! If you ever need anything, even just a shoulder to cry on, call me. I am here, praying for all of you, and can't wait to hold baby #2 in my arms! Love to you all!

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