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The story of our precious little girl's 17 months of life with Trisomy 18 (July 4, 2010 - December 15, 2011) and of us, re-learning to live "after Lilly."
"I will praise you for I am fearfully and wonderfully made ...." Psalm 139:14

Monday, August 23, 2010

Echo ... echo ... echo ...

Lilly had her echocardiogram this afternoon. She wasn't too impressed with the procedure. She cried during part of it but finally stopped, exhausted. She looked so tiny and pitiful on the big table.

The echo confirmed what was seen in utero - she has a large hole in her heart, specifically in the ventricular septum. This is a problem because it causes the oxygenated and unoxygenated blood to mix, which is hard on her lungs. The dr. said the hole is too large to close up on it's own. She has some other heart abnormalities: her aorta has only 2 openings instead of 3, and her mitral valve is leaking a little. (Neither is a concern right now.)

The dr. prescribed a drug called Lasik. (I don't have the spelling in front of me - but it sounded just like the eye surgery to me.) It is supposed to dry up the extra fluid in her lungs and help her breathe easier. (She has labored breathing at times.) It is also apparently a medication that isn't that common as my husband went to 3 pharmacies to try and find it. The last finally said they would order it and it should be in tomorrow.

We heard again that the medical profession doesn't usually want to do open heart surgery on a Trisomy 18 baby. His reason was that they were concerned that she wouldn't be able to breathe again on her own after the surgery. (She would be hooked up to a ventilator during the surgery.) We heard again that the doctors don't think it's "ethical" to put these babies through the surgery, since they have low life expectancy and when they do die it's usually from something other than the heart problem. (But that it is necessary to put normal babies through it.) We made clear that we will seek surgery for her, that we will give her the chance to live.

If she does have surgery, they would like do it when she's between 3-6 months old and 10-11 pounds. She'd spend 5-10 days in the hospital and would be on medication for awhile to get fluid off her lungs.

Lilly goes back to the cardiologist on September 15.

This doctor, and the others we have worked with, have all been very kind. But I've been very frustrated with the "medical mentality." However, I think I've finally been able to make peace with it. I recognize they see things through particular lenses. Just as I do. They are doctors looking at things like medical statistics. I look at things from the view of a mom, a Christian, and from the legal field. We obviously will just have to agree to disagree on this one.


  1. God is in control, Sweetie. I know you know this more than anyone. That is our comfort for our little baby girl. I pray the new medication will ease her laboring. She still proves to be a tough little mini-cookie!

    Your Shisshy will be there for the surgery and after wards to lend a hand where needed.

  2. Dearest L
    Thank you for this way of keeping us up to date.It does comfort our heart some to follow.
    Don't know why Lasik is hard to is used for congestive heart failure patients to control fluid. I've no idea how to spell it either. and the little bed never looked so pretty.
    all our love

  3. I often wonder if she is in any pain. :(

  4. Sadly, the medical world generally does not share the biblical view of life and how we are created in God's image. We will pray that the Lord will provide a surgeon, or even heal Lilly's heart without one. Thanks for keeping us up to date. What a blessing that the Lord has kept Lilly alive thus far!

    Love, KH

  5. Lisa,

    Thank you so much for providing this blog so we can get updates on Lilly. You are doing an amazing job and your faith is an inspiration to me. Lilly is truly a miracle and I know that she has blessed everyone's lives. I really believe in the power of prayer and am praying hard for Lilly. May the Lord bless you and keep you always.

    Love and hugs,

    MS in Texas