We’re still home and watching Evie. She’s still bleeding, but her hemoglobin remains steady, which doesn’t make sense. Her bloodwork shows that she doesn’t have the necessary iron to make more red blood cells and she’s NOT making more, but her hemoglobin was going up. It fell for a little bit, but then somehow went up again, even though the bleeding appeared worse.  She also was fighting off a virus for the last two weeks (which she handled BEAUTIFULLY with the help of the CPAP keeping her lungs clear), but her bloodwork looked pretty funky, making it look like she had a possible bacterial infection, but none of her symptoms matched up with that and she got better on her own.

We also saw cardiology last week for just her yearly followup and he was pleased with how well her heart held up during these GI issues, but couldn’t explain why it does what it does, which is the complete opposite of what it SHOULD do. Basically, as you lose blood, your heart should speed up to work harder at getting the blood you do have around to your body. If you have a crew of trucks delivering goods and suddenly you lose 40% of those trucks, they’ll need to speed up to make up for the lost trucks. Except, Evie’s little trucks slow down. They drive SLOWER, but still manage to deliver the same amount of goods as before. No one understands how or why her heart does that. Her body is figuring out how to compensate, but everyone is puzzled as to how she’s actually doing it.

That pretty much sums Evie up all around.

Of course, we’ve noticed that her heart rate has been much better since the bowel resection. Which again, no one can explain.

But really, this is Evie 100%. She shouldn’t be able to see very well, but she does. She shouldn’t be able to hear very well, but she does. Her lungs used to look so horrible at baseline that everyone was always convinced she had pneumonia, but her oxygen saturation would be 100%. She should have been lethargic and pale with the GI bleeds, but she wasn’t. She was energetic and wild and her coloring looked the same even after the blood transfusions.

She just figures out ways to compensate. Amazing ways.

Hopefully I hear this week on a date for the next exploratory surgery in Cincinnati and hopefully that date is sooner rather than later.  Please pray that the bleed doesn’t get worse and that she doesn’t need yet another blood transfusion at some point. But really, she’s doing great other than her allergies kicking in full force. LOTS of coughing these days. She’s enjoying the outdoors anyway, though, and is particularly excited about the treehouse Daddy started working on.

2015-04-12She’s also been working on her kite flying skills.



Just Monitoring and Waiting

Evie’s bleed seemed to stop on Saturday evening as her stools returned to normal, but they started having black in them again Tuesday night. Oddly, her hemoglobin has been trending up which makes absolutely zero sense. We looked at her iron levels more in depth yesterday along with checking her hemoglobin and her levels did not look good. Her pediatrician recommends that we have Evie see a hematologist. *sigh*

Evie is acting great, though, and we’re working on the packing on the pounds before we head to Cincinnati again. Feedings are going well, energy level is great, doesn’t seem to be in any discomfort, so we’ll just keep monitoring her.