Mid-July, what's going on?

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Wow, my last post was June 4th. My how time flies.  Let me update you with what’s going on. But first, I’ll warn you, there isn’t a happy ending.

As you know, in Mid-May, we adopted twins, Isaac and Eliana.  Happy as can be!

June started with everyone making it home and getting settled in. I won’t say we got any sort of routine down, but we were getting used to what life had in store for us.  When Ellie got out of the hospital, we were told to get her to gain as much weight as possible, as quickly as possible, so she would be in better shape for her next heart surgery.

Appointments scheduled, and bottles in hand and mouth, away went the month.  Isaac did great, and ended the month at about 10 pounds. Ellie slowly but surely gained weight, going into June at a whopping 7 pounds.  (They were 5 lbs, 11 and 10 ozs at birth.)

I took Isaac for a 1 mile fun “run” in the stroller. As expected, he slept the whole way. But I really enjoyed having a cup holder.  I might get used to this instead of carrying a camelback or handheld.

July started with us picking out fancy outfits for the 4th of July.  But alas, we never got to put them on.

July 3rd, the whole local family shows up for a chicken picnic. As soon as they walk in, we left for the immediate care because Ellie’s stomach was distended. (We’d be watching it all day, and finally decided the home-care wasn’t doing anything.)  (They did leave us with a fridge full of chicken.)

Immediate care took an x-ray, said they can’t help and need to transport her to Egleston. So off in the ambulance she goes.  8 hours in the ER (which was pretty good for care), and she gets admitted to the Cardiac unit.

The doctors consulted.  (Unfortunately, they didn’t consult with us, and we could have saved them hours of tests and theorizing.)  We sat in the waiting room being pissed because we weren’t allowed in to see our daughter.

The nurses did their thing.  We were mostly ignored. (We did spend an hour or so talking to one of the nurses about things, and how family-centric care should work.)

Tests were run. There was more consultations.  We were marginally informed of what was going on.  We had more time in the waiting rooms.

Well, to get to the point, 36 hours after being admitted, Elliana passed away.  A blood clot got into her bowels and killed off her whole intestinal tract.  Her liver was in the process of shutting down when they did an exploritory surgery and found this out.

Thank you to everyone who has been there for us. Your support, thoughts, well wishes and everything else has been much appreciated.

We’ll write more later about our opinions on the care she received, both in Florida and here, and what we’d like to see happen in the future.

Our little Ellie

Written on July 17, 2009