Cate Taylor, 13 months old.
21 pounds 8 ounces
31 inches tall
Oh what a day, what a ride this life is.
We found out in August that Cate has the same heart condition that I do; Long QT Syndrome. We started her on medicine immediately and began getting things in motion for genetic testing.
We completed the genetic testing before Christmas and got the results a few weeks ago.
Not the results we were hoping for, as they were inconclusive. Seventy-five percent of genetic LQTS cases are a mutation found on one of six (I think) genes. Knowing which gene the mutation is on enables you to more accurately and effectively treat the condition- certain medications are known to be effective for certain types.With ours being inconclusive... it seems as though treatment is more of a guessing game, more trial and error. We were supposed to follow up with an electrophysiologist March or April.
Last Wednesday, I had the scariest moment of my Mama history. Long story short- I watched Cate pass out. She fell, was doing the 'silent cry', I picked her up, she let out a little wail, was limp as a newborn baby, eyes rolled back in head, came back to just as quickly, took her paci and that was that. Needless to say- it scared me. It was one of two things: her crying so hard that was holding her breath and passed out, or she had a heart episode and passed out. We'll never know which it was, but it was enough for me to move our appointment up to as soon as possible...which ended up being today.
We saw our new cardiologist, who is an electrophysiologist- one who specializes in conditions that deal with the electrical flow of the heart. I was very comfortable with him immediately and really liked him overall. I'll spare you the details of the whole appointment, but the gist of it was this: the episode concerned the doctor as it did me. We're increasing (again) her dosage of her beta blocker- considerably more so this time, and she's on a 21 day, around the clock monitor. I've got to be honest- all of it freaks me out. This is my baby... my baby girl... This monitor, all these wires and the probes, the little box stuck to her chest... it makes me feel like she's sick, like something is wrong. It's hard for a Mama's heart to take. But I am thankful and glad that we are monitoring her- I was going to ask to do so, but the doctor insisted before I even had a chance! I'm confident of the care we'll receive and glad that we're being proactive.
As far as where we'll go from here- we'll see. I'm taking this one step at a time. Let's get through these 21 days of monitoring first. What I've thought over and over is that none of this has surprised God, no finding will. He made that little heart, created it just as it is... He knows each and every beat it will take; He's not caught of guard by this.
My baby girl is in good hands, of that I'm sure.
As far as the rest of my day went... well! How about... brakes going out on my way home from her appointment, being stuck at the gas station for over an hour, waiting for the tow truck for 40 minutes. Finally picking up Corban from my friends house, hurrying home so I can study for the Bible study I was supposed to teach at 3:30. (It was after 2 when we got home from her 10 a.m. appointment after all the brakes nonsense). I finished my studying, put Cate in Jordan's car (which has a spare tire on it since the other one blew as he was leaving church last week). Go into Corban's room to load him up, expecting him to be sleeping, but instead find him painting his desk after having finished painting himself head to toe, shirt and pants, legs and arms with DIAPER RASH CREAM. Hurry up and change and wash him off, trying not to crack up, put him in the car hurriedly- as I'm now 10 minutes late for leaving, throw the car in reverse and what do yo know if I don't get STUCK in my driveway. I mean, stuck stuck. Like it's still sitting there perpendicularly parked stuck.
I might've sat and cried for a minute, then gathered my children and went back inside.
I've probably had better days in my lifetime, but that's alright. We got through it, and tomorrow is a new one. I was prepared to teach on Philippians chapter 2 today, and when I came inside from sobbing in my car, all I could hear over and over is "Let this mind be in you which is also in Christ Jesus... Do everything without complaining and questioning...Hold fast the word of life..."
Psalm 27:14 says, "Wait on the LORD; Be of good courage, and He shall strengthen your heart; Wait, I say, on the LORD!"
I've found that to be so true.
God's taking care of us- still, always.