Kenley’s Heart

Kenley at 5 months old- trying to get her weight up. My little gift from God.
Kenley at 6 weeks, before succumbing to viral spinal meningitis and heart failure.
This was actually taken in the Disney World resort, oblivious to the news that we would soon face.

Kenley has always been a good sleeper. However, she is sleeping a LOT now. I started counting how many hours of “Wake time” my now 15 month old has each day, and she has been averaging only 5-6 hours of awake time a day. That means that she sleeps around 19 out of 24 hours a day.

While at our local cardiologist appointment a few weeks back, I inquired about this and he assured me that it was not related to her heart, and that kenley is probably growing.

Then on Wednesday, my mom called.

She said my dad came to her in a dream that night, and I needed to call Shands. Everyone has told me that the sleeping isn’t an issue- her local peditrician, her local cardiologist. But I don’t think it is normal, to only be able to stay awake 1-2 hours between naps.

I hung up and called them right away. I got that feeling again, in the pit of my stomach, that something isn’t right.

So I called her main pediatric cardiologist at Shands Hospital about 2 hours away. We have been there 4 times in the past 11 months. They were alarmed and asked me additional questions, including “Does she grunt in her sleep”.

That’s odd.

I said, now that you mention it, she does make some strange noises at night. It almost sounds like she is trying to have a BM but when I check on her, the diaper is clean.

They said they defintaly needed to see her on Monday, and the RN would check with Dr. Joe to see if she needed to be seen in the next 48 hrs- they sent us to a local ped. instead and kept the monday appointment.

As I lay in my bedroom Wednesday night, thinking about Kenley, I hear her clearly ‘grunting’ through the monitor. Almost like she was in pain- so I went across the house to her bedroom to see if maybe she was awake and trying to go the bathroom – which would explain the noises.

When I peeked in on her, she was not awake- laying on her stomach, making these pitifulsounds. I was afraid that maybe I was over analyzing her sleeping- being the overly cautious mom of a heart baby that I am. However, the grunting AND the sleep together are not imagined.

Shands asked me to take her to the local pediatrician to have him check her eyes, ears and listen to her breathe. They wanted to make sure there wasn’t some other kind of infection causing her fatigue.

There wasn’t.

We are taking her down on Monday to be reevaluated. This means another echo, EKG, chest xray and exam by the wonderful staff at Shands. Maybe it’s all nothing. Maybe its in my head. Maybe it’s time to have the open heart surgery to repair the hole.

We will just pray and see what they tell us in her best interest. God told me long ago, as I laid in bed one night afraid that my then 11 pound, heart failure baby wouldn’t live through an invasive surgery. He told me that no matter how this plays out, He will be there.

I know He keeps His promises and He will be with us no matter what the next step is.

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