Monday, March 10, 2008

Cardiologist report and "stuff"

Well, all in all we had a good visit today. Emma was a trooper although she did scream through everything. A bit of a GOOD sign to me since she wanted Mike and I and not the doctors! Dr. Nadkarni confirmed that she does have an AV Canal defect and needs immediate surgery. The good news there is that she believes surgery is indeed an option! The doctor that is the 'best in the area' that does heart catheterizations is on vacation for a week so we were told to expect a call to schedule something in about 2 weeks. The surgery and cath will be scheduled back to back in hopes that the cath has positive results.

Here's the scoop there. We know Emma has pulmonary hypertension (high blood pressure in the lungs) from too much blood being pumped into the lungs due to her major hole in the center of the heart which affects the upper and lower chambers as well as both valves. What we don't know is how high the pressure is and whether it is 'reactive'. A reactive pressure will change when given medication and will be able to be lowered for surgery. A fixed or nonreactive pressure is permanent and not able to be altered. Dr. Nadkarni says based on her age and a few other things she believes that Emma's is reactive and that surgery is possible.

We were sent home with the same medications that we had from Ukraine- Cantopril and Digoxin- but this time I'm sure they'll be LIQUID medications (I'll post about the lovely illicit drugs I was doing on the airplane later LOL) and appropriate medication doses for her current condition.

And Micah- YAY! He has NO DEFECT but does have a thick muscle tissue which could be the result of his mother having diabetes (the usual reason, but we have no idea if she did or not!). He will go back in 8 months to see if it's lessened and make sure it's not thickening. He is doing great though! He required sedation for the echo but came out of it fine and ate SIX ounces in the car on the way home! YAY!! We switched him to soy yesterday and he's had a much happier belly. No other meds like probiotics and such yet because we want to give him a little while to see if his little body will self-regulate.

So we are looking at surgery in 4-6 weeks in St. Petersburg at All Children's Hospital after a heart cath. The cath will be done by Dr. Suh and the surgery by Dr. Quintessenza. Dr. Q also did Brianna OHS (open heart surgery).

Also, we were able to find a tub and a highchair for Emma. Both were here local and cheap- the best part :) I was able to use gift cards from my friends at ROA (Down syndrome online group) to purchase them so that was even better. THANKS GIRLS!!!!




  1. Meredith. So glad the reports come back favorable... sounds like Emma can be fixed right up in just a few months....praise the Lord!! Micah is just too precious as well and they both FIT right in with the Corninsh blond hair blue eyes...What a blessed Momma you are!



    Lu and William

  3. Fantastic news. My son was on Tracleer and Sildenafil (Viagra) which helped bring his PAH down. He was also on Oxygen. Nitrous Oxide did not have an affect on him. Are you part of the Down Syndrome Heart Group. Might be worth your while to pay them a visit again. So glad surgery is an option and that Micah is good to go.


  4. thank goodness. I am SO relieved. And tickled to see the gift cards being used so wonderfully!

  5. I swear Emma looks bigger and healthier and better color already in just a few days, with heart surgery, watch out mama, she is going to be a new kinda woman!!
    Amy O

  6. We've been praying all day for you guys. We are so happy she can have things fixed. Robb and I have been reading your blogs everyday since you left. I know God will take care of you.

    the Kerleys

  7. Meredith,

    Great News!! Micah and Emma fit in so perfect with their blond hair! Emma's story is so powerful and beautiful... I was on of the ones praying for her all along the way and God brought her to the perfect family. We are up at All Children's quite a bit in St. Pete, we are about 45 mins. from there. We have a branch of it down in Sarasota too. They are great there!

    God Bless,
    Kelly S
    RR Group

  8. This is good news, I am very happy for you all! I'll keep praying that everything will go well for and during Emma's surgery.:)

  9. I'm glad the gift cards were able to be used for such needed items! :)

    I'm also glad to hear you got some good news at the cardiologist. We'll be thinking of you all up to and through Emma's surgery.


  10. I'm glad you got good reports on both kids. We'll continue to pray in the coming weeks that things go smoothly and that Emma comes through surgery with flying colors.

    I'm also glad you found the things you were looking for to fit Miss Emma. She already looks so much healthier and happier!

  11. Glad to hear the appointments went well. Many prayers for her surgery and that the blood pressure will not be a problem.

    I'm waiting to hear if you got Captopril in liquid form. Back a billion years ago when Mercede was on it, I had to crush a small pill, mix it in a med cup with measured amount of water and while stirring with the syringe, I had to fill the syringe. I found a woman back then who got it in liquid form but it had to be refrigerated and only lasted 15 days. So I perfer the pills instead. She needed only a small dose of the pill but there couldn't divide it, or it would of been too much, so that is why we had to try and dissolve it in water (which doesn't work, lol)

  12. Now that is the kind of update I like to hear!Thank you so much for posting.We all will be driving you nuts for every little detail now!I think these two cuties have wormed their way into all our hearts.

  13. I am so happy to hear this Meredith. I have been following your posts on ROA and your blog.

    I know this will be a long few weeks but hopefully the Dr's intuition is correct and the surgery will fix her little heart.

    Thanks for keeping all of us posted.

    mom of a teeanager (ROA)

  14. Hi Meredith! I stop by here every so often. Darah also has pulmonary hypertension and her pressure is fixed where it is unfortunately. Darah is doing really well, though. If I can be a resource in that department, please don't hesitate to shoot me an email! Your newest additions are absolutely beautiful. Congratulations!