Yes, this precious face went to her heart specialist today.
She wasn't nearly as relaxed while we were there, however.
In fact, she was a mess most of the time.
She didn't like the doctor at all.
She made the "all done" baby sign through most of the visit, and let them know she was all done verbally, too.
Here's the condensed version of the story, in case you are pressed for time.
She wailed, they took images of her heart with ultrasound and x ray, we asked a hundred questions, we learned that the hole is now very large, we were assured that she is growing and developing quite well, and the plan is to come back periodically with the long term plan correcting the defect at age 4-6.
The appointment was at 8:15 AM, and we dropped off her brother at a friend's house. (He is old enough to have a friend!!!)
The staff at Women's and Children's Hospital were polite and good at their jobs. Every little procedure, even measuring her length, was a challenge. She was NOT in the mood to be messed with.
I thought EK had grown significantly in the last two weeks, and it was confirmed. She went from 92% for height to off the charts in height. That doesn't make sense mathematically to me. She has also increased in weight from the 27% to 52%, so that's probably why it feels like she's been eating twice as much as she did before.
After the nurse weighed, measured, took blood pressures and plus ox levels, we went into another patient room. The doctor came in to have a listen to her heart. EK gave him a dirty look the second he arrived. I don't know how he managed to hear her heart sounds above her sobs. The doctor's sidekick doctor, who was bald, didn't have any more luck. EK seems to have a strong distaste for bald men and throws fits whenever she sees one.
Then we went into a different room for an ultrasound of her heart.
When we were at her first visit, she was 11 weeks old. She laid on the bed and I held her hands with my thumbs. She was relatively still for that 45 minute procedure.
This visit was shorter, but it was different in that EK wanted to participate in the exam. She tried to grab and taste the ultrasound wand. She played in the jelly used to lubricate the device. She squirmed and arched her back in defiance. This time I sat on the table, holding her on my lap. It was a very different experience. Not bad, and I didn't have any time to stare at the screen and try to anxiously decipher what I was looking at. I was busy trying to get her to chill the heck out.
Next was the ECG. She was okay with this situation, probably because it lasted only a few minutes. She was so curious about the wires and the stickers on her chest.
Dan and I joked that DHH would have loved this procedure. He would have insisted on hooking up each one of the clamps to the chest stickers and been fascinated by the wires. EK was interested in it all, but she didn't try to pull at them or reconnect them in any other way like we think her brother would have.
After the procedures were done, the specialist came back into the room and told us that the ASD has not decreased in size. He called it a very large hole.
Remember how it was called a moderate sized hole at first:? Then a moderately large hole? And now this description? I think they must down play the size of the defect to parents so they don't go nuts when they learn their three month old has a heart condition. Now that my daughter seems more sturdy and can crawl around and feed herself, it seems more manageable that she has a hole in her heart.
We asked many questions, namely wanting to know the best and worst case scenarios and prognosis.
Worst case scenario: Our girl stops growing (which clearly has not happened). She labors for breath, has a hard time eating, sweats excessively, gets several chest infections. The she gets the hole corrected very soon.
Best case scenario: EK continues to breath fine, grows and gains weight appropriately, doesn't catch an above normal amount of colds, and behaves like any other child. Then she gets the hole fixed when she is 4-6, which is the doctor's ideal window of time to do the procedure.
And by procedure, I mean open heart surgery. There is another way to fix the hole, and its similar to plugging the hole, but he didn't think that would be what he'd do to fix the hole. It would be a surgical procedure.
She'd need a night in the hospital if the ASD got "plugged" and would be normal very quickly, since its not as involved as open heart surgery.
The surgical option means she'd be in a hospital overnight for at least three days, but her recovery would be pretty fast, barring any complications. Apparently, little kids bounce back from surgery really quickly.
Well, that's the news, internet friends.
I asked several women in my life via email yesterday for prayers and positive vibes, and I got seventeen emails of support from these ladies. Their words made a difference in keeping me focused on my daughter's long term health, content in her current health, and at peace with this situation. I know this appointment wasn't about me, and I was able to keep it that way because I wasn't so freaked out about her heart-hole that I wasn't able to help her feel safe and secure.
Thank you so much.
These days Elsa is waving, pulling up to standing at any opportunity,
clapping and cheering and singing, saying Da-gadee, and eating any new
food we present to her. She is a thriving, joyful girl.
Tomorrow is her second cardiologist appointment for her heart defect.
Please pray for her (us) that the appointment give us more information
about what her medical needs are and the best way to treat them.
- Bethany Haid
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