A Very Happy Echo

Seraph had a sedated echo cardiogram this week.  It's like an ultrasound on her heart.  They sedated her so she'd lay still long enough for them to get a good look at everything.

Seraph didn't mind being up at 6am.  I had to be up late to do her midnight feeding and then switch to pedialyte at 2am.  I was really tired.  Thank heavens Daddy was driving! Seraph loves driving.  She mostly watches out the window and kicks her feet.

Seraph liked the toys outside of xray.  She hated xray.  They make her sit still and mommy leaves!! I like to stand back by the computers so I can take a peek at her xray as it pops up on the screen.  Her xrays looked fantastic this time :)  yay!

 There was a computer in the examination room!  Seraph couldn't quite reach the keyboard...but some nice person had left the mouse on the floor for her to play with.

There was a LOT of waiting....and Daddy got lots of work done on his phone.  Thankfully, I had the iPad along to keep Seraph busy.  (I brought it to read a book while she was sedated, but once she saw it, she demanded her app-play time!)

 The nurse practitioner and the cardiologist were super smart - no lab coat today so Seraph had no negative reaction to them even when they listened to her heart and lungs. Seraph was congested from allergies, but they felt she was OK to be sedated.

 Seraph was very happy and very social...until the IV-team started putting on gloves. It was a HUGE warning signal for her. She cried immediately and looked around for a way to escape.  I used to offer to help hold her still.....but I just can't do it anymore. I figure she needs big hugs when they're done and that's my job.

 We almost left her favorite puppy under the chair, but the NP saw it.  I would've had to buy her a new one.  She loves her puppy that much!

 After the IV...we moved to the echo room.  I held her on my lap while they started sedating her.
Seraph was almost a year old before she decided to allow me to give her comfort via hugs and touching.  Before that she would just shove everyone away.  Now she wants me to hold her and give her love.  I never knew it was something to be grateful for....but I am ever so grateful she let me hold, comfort, and sooth her as the meds started kicking in. :) She is one tough cookie!

Recovery time was fast.  We had our chat with the cardiologist.  It was all good. Her heart function/xrays/valves...everything looks good.  We've set up a heart Cath in August.  Cardiologist is optimist about her next open heart surgery...and feels we'll be able to do it in August.
He also cut back on several of her meds.
It was crazy talking to him....because this was the first time that it was all good news. I feel better about her upcoming surgery.  I think she'll do well.

Here's a picture of Seraph the day after her echo:

They told me she would be cranky....boy were they right!  but she was also happy to be home.

Seraph Home

We don't have news from the cardiologist yet, but someone pointed out I forgot to mention Seraph is home. The heart cath went well. Her pulmonary veins look good. The surgeon was surprised they'd ever worried about them. (Thank you for all your prayers and fasting.)

Seraph came home early, early, early Saturday day morning. She has been cranky the last few days. She is still recovering...but with a bit of Tylenol, all her smiles come back. She's been kicking her legs a ton today. So, I think she's starting to feel better.

Her color looks better than before the surgery. The surgeon plugged up some extra blood vessels that she'd grown. Her heart and lungs are working more efficiently now.

Heart Catheterization

So, tomorrow's the big day :)

This video explains the heart cath procedure:

http://www.youtube.com/watch?v=xwh3tlFaVm0

Seraph is so happy tonight. She's playing with her alphabet town toy.

I'm excited to hear good news about her heart and pulmonary veins. I'm sad that she'll have to be intubated for the procedure. Silver lining: she's healthy enough to come off the vent. I pray she'll come off it quickly. She hates it sooo much.

I hope it doesn't hurt her voice. She's just coming into her own voice - cooing and trying out different baby sounds. Sometimes she sounds so much like Angel that I can't tell who "talked" unless I'm watching their mouths.

The actual procedure should start just before noon. Please keep her in your prayers. They want to keep her overnight to watch her breathing. If there are no complications, we'll have her back Saturday morning.

The surgeon will tell us his general impressions....but we really won't have results until they compare the videos and numbers to the last heart cath. In question: will she be able to have the 3rd heart surgery she'll need to survive (the Fontan). Are her pulmonary veins big enough to handle the extra pressures the Fontan would create? How are the pressures in her heart now? Is everything working as it should? Is her heart valve leaking more than normal?

etc etc....

It's a big day for my little sweetie - I hope she does well. Thank you for all your prayers and support. This is a big milestone in her journey - thanks for checking in on her progress.

*hugs*

Grumpy Days

Seraph is grumpy. She might be dehydrated. She sees her pediatrician tomorrow.

Other than that, she's doing well. Physical therapy went great today. We're practising putting her feet down when she's sitting (being held). We're also practising pushing up on her arms when she's on her tummy. She hates it, but she's getting a lot stronger.

August 28th is a big day - her heart cath. They'll look inside her heart and check pressures to see if she'll be eligible for the 3rd open heart surgery she'll need next year.

Yipee Horaay Woot Wahoo Yaaaaaay :)

Seraph just came out of the cath lab.  They found some problems that they were able to fix and she should do better and come home.

After the Glen, the heart has more pressure than it's used to having.  To compensate (and especially if the body's fighting off any kind of infection, which she was) your body makes new veins that reconnect areas of the heart to relieve that pressure.  Those new veins basically undo the Glen.  So, they sealed up all these new veins that aren't supposed to be there. Now her Glen should be working as intended--the returning blood from her head will go straight to her lungs.   Her heart will be more efficient.  She'll be pumping a higher percentage of oxygenated blood to her body. She'll feel better.

She still has some extra veins that were too small for them to close.  These will go away on their own as she heals (when the original stressor/infection is gone...which it is.)

Not 5 minutes before we heard the news, I told Sexy Haqon that it'd be great if they'd just call and say that they found the problem and just fixed it while they were there.  And that's exactly what happened.  Way cool!

They plan to extubate her tonight or tomorrow.  She had zero complications with the procedure.  Everyone is happy.  ...and I'm the happiest of all :)

Thanks, everyone :)!!!!!!!!!!!!!!!!!1