Friday, September 4, 2009

Cardiac Visit

We survived the first post-surgery check-up! Grace will be having her cardiac cath at the end of this month (around Sept. 30th?) and the plan will be to balloon her very tiny pulmonary arteries, and possibly place a stent to keep them widened.

The stent will be like a chicken-wire tube placed inside to avoid collapsing. Hopefully the widened vein will promote growth further down the artery with the added pressures. Unfortunately, if this doesn't work, of if they're unable to do this, they'll go in for ANOTHER open heart surgery. If that has to occur, they'll place an even larger conduit and close the hole in her heart, just like this last surgery. I asked if we thought if it would be another 10-12 hour procedure like the last, and the answer was hopefully not. Apparently, the last one took longer because of the higher pressures in her heart, so they kept her for monitoring, until they decided to re-puncture the VSD patch. The good news is that her most recent EKHO's show that there is no reverse blood flow, so the VSD hole is unneccesary. Since we would be at 3 surgeries before age 1, my mind went to the worst possible scenario- would we be needing a heart transplant with this much abuse/beating on her chest? Again, not the answer I expected or wanted... but possibly. Apparently, many kids with issues like Grace need to have a heart transplant around the 5-6th surgery. The cardiac team is hoping this would put Grace in her twenties before it would be needed. My mom and I left the cardiologist with a little less spring in our step. We needed time to process the news. A lunch date with dessert was in quick order- off to lunch we went! After a few hours, we processed, and we're prepared with the strength we needed.

We tried an experiment that morning with her oxygen. I took her off as we left Surprise, and 1.5 hours later we were still at an O2 level of 96%. YEAH! Grace is off oxygen! So far, she's maintained her 93-96% sats. One less thing to lug!

Other than that, Grace is doing AWESOME! She's "talking", and this starts about 6 am each morning and doesn't stop until about 8 pm each evening. She is a non-stop babbler! We think we've heard "hi" a few times, but we'll see.... Grace is quite the daredevil. She loves to get tossed in the air, tickled to exhaustion, pretend dropped, pretty much anything that would freak me out!

I think roller coasters will be a daddy-daughter experience, as mommy wants absolutely nothing to do with that! :)

Grace is still working on sitting up on her own. She can manage a few moments unsupported, or sit for an hour with support.

Grace went to her first birthday party this week. We spent an evening at Peter Piper Pizza. I was on germ/sanitizer patrol and I think I about washed my hands off that night! She had fun, and the boys were great with her. Michael loved all of his presents,

and Matt was very protective of Miss Grace.

We still haven't heard anything about the house, but I don't think that is abnormal. Time will tell...

It's a holiday weekend- Yahoo! We have a whole lot of nothing planned. It's Friday night @ the Marchese household, and we'll play with Grace, then probably watch some movies and chill.

Tomorrow will find us with the Frank family, enjoying fajitas. Sunday may find us on a date night... we'll see if we have the energy, or the desire to leave our little princess. Monday will be a day of rest. Perhaps I will place a PJ mandate.. nobody can get dressed or do their hair/makeup, a day of being blissfully housebound.

Make it a great weekend! Cheers!

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  1. Well, at least you have a few weeks before the cath right? Sounds like we'll miss eachother by a few weeks. Grace is so beautiful with all that shiny hair and chocolate brown eyes! Oh and HORRAY for no more O2!

    Transplant is something that I always had in the back of my mind, I just hoped it wasn't so soon. It is frightening to hear the word transplant. Praying that the cath will do the trick so she doesn't need OHS #3.

  2. Thanks for visiting my site! I look forward to reading about Grace and her story. I know one thing...She is a BEAUTIFUL baby!

  3. Hey Anneke, Felix, and Grace! It sounds like things have calmed down for you a bit...of course, that's always a relative term. Good luck in your home search!

  4. Thank you so much for the sweet message on our blog. Grace is absolutely precious and is such a sweet, strong little fighter. What a big miracle in such a little girl! Many, many blessings to you and your family!