Monday, May 18, 2009

Today's appointment

I'm sitting here at the computer with my legs criss-cross-applesauce. Lily is lying in my lap. The way she's curled up, she's made herself the size of me, right at my waste. How this little girl of average length can make herself so small astounds me!

What astounds me even more is today's doctor's appointment. Lily is now up to 5 pounds, 4 ounces. (I think it's all in the cheeks!) The doctor still cannot detect anything wrong with her heart, so he's sending us to a cardiologist. That appointment is next Wednesday. According to the doctor, if they don't find anything wrong with Lily's heart, she could be with us for 10 to 12 years. That's what he said!

Now, I know a little differently. I know that heart failure is a major reason babies with Trisomy 18 don't survive, but I also know that pneumonia and other infections can take their lives. (So, if you happen to ask me if you can hold Lily and I whip out a bottle of hand sanitizer, don't be offended. We do carry a can of it around in her diaper bag. You'd think I was quite the germophobe the way I use the stuff.)

So, Lily is not out of the red, but for now, the doctor can't hear anything, and that's enough for me to let out a loud whoosh. I'll take that and every day I can have with her.


  1. I'm glad no heart issues so far. What a blessing. Yes, our babies fall sick very easily. If I'm sick, she gets it without fail. So besides the sanitiser, masks are a must!

  2. What wonderful new, Jill! I'll report this to the Session tonight at our meeting and we will say a special prayer for little Lily.
    Love to you all!
    Lisa Eaves

  3. Let out another huge whoosh, Jill ... what joyful news. I know that today Lily is curled up so tiny and you are "astounded" ... I know this is burned into your heart and memory ... I know that He answered prayers and we all go boldly to Him in prayer for Lily Grace ... who is fearfully and wonderfully made ... in His image; You are amazing and bless us with your incredible words ... thank you for sharing Lily with us. Peace, love and prayers ... Ann Jackson

  4. Thank GOD for answered prayers!!!
    I'll keep praying for only good news.
    I just love that little angel of yours. I love to look at her sweet face. You are a lucky mommy. Take Care and Godbless you and your entire family.
    Love from California,

  5. Well I think that's the best thing I've heard on my birthday today!

    I hope the cardiologist appointment goes well for you! Those echo tests are the most amazing thing to watch! I hope you get a good sonographer that's nice and chatty and tells you everything they see while they're making the films.

    Love you cuz!


  6. Jill,
    Your posts continue to bring such joy. I have watched your video of Lily over and over again. She is so amazing and precious. I am so glad for your good news today and pray for continued great reports. Much love to you all.
    Shannon (Oliver's mom)

  7. Praying that you have many, many, many days to cherish your sweet Lily!

  8. thank you so much for the great news. you go sweet Lily.

  9. Your blog was sent to me by May and I am very grateful as your beautiful daughter brings me hope and joy. Our little boy is due in August and has T18. I pray you have many happy times ahead with Lily and thank you both.

  10. Jill, that is such great news!! I'm so happy that so far, Lily's heart is strong and healthy. I'm thinking about you guys constantly ... take care and enjoy your little beauty!!