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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

Thursday, January 6, 2011

Cardiologist report

Weight check = 7 lbs. 15.5 oz. !! (This was Lilly's weight on the cardiologist scale. She's an ounce heavier on it than our scale - we like that!)

Lilly's cardiologist appointment went smoothly yesterday. She had an echocardiogram done on her heart, as usual. The pulmonary artery band is still a perfect fit. So that means Lilly has more time to hopefully reach 10 pounds before her open heart surgery.

I need to take my camera next time. Lilly looks so cute and tiny on the table where she lays to get her echo done.
The cardiologist said that at her next appointment, in 6 weeks, he will evaluate her weight and band, and see if we should start setting up a date for surgery. But there's no rush, Lilly is doing really well with the band and her medications.

I did learn something that I wasn't expecting to yesterday. A cardiologist in training was working with Lilly's cardiologist and she noticed Lilly's cradle cap. She noted that cradle cap is a fungus and that it can spread on the body. In fact, apparently that's what the weird scaly stuff that Lilly sometimes has on her eyebrows is. She said that dandruff shampoo clears it up quickly. I found that interesting but am not sure I want to use dandruff shampoo on my baby's delicate head. Instead I decided to first try a recipe in my aromatherapy book, using almond oil and one drop of two different essential oils. It seemed to work well. I need to do a couple repeat applications though before I form my final conclusion.

After Lilly's appointment, we took my husband back to work. We went in with him so that Lilly could meet one of her fans that knew we were going to be there. (The mother of a co-worker of my husband.) She was so kind and told me how much Lilly and the blog mean to her. Not only did she give Lilly lots of sweet compliments she also brought dinner for my family and I! A yummy roast and veggies in a big beautiful bowl that we get to keep. How's that for thoughtfulness?!


  1. All of my children have/had trouble with cradle cap (even in their eyebrows). Dandruff shampoo was too harsh and caused a separate rash and didn't really clear up the cradle cap. Olive oil applied and left to sit a bit and then brushing with a soft brush (like the kind they have at the hospital or a soft toothbrush) works very well. It's harder to get at when they get older and more hair and the olive oil is harder to wash out with baby shampoo. Your oils should work fine-you'll just want to help it out with a bit of brushing if Lily can handle that. I've known people who just did the oil without the brushing, but they said nothing really went away/got better until they used the soft brush.

    Micki (member at Annandale)

  2. We know your husband from his work also. I will speak to him about providing you all a dinner. I love to cook and it would be my pleasure to serve your family in this way. Lilly looks great and you are also an inspiration to our family. Lord bless you!

    The W-H family

  3. i wonder if that means lilly has some intestinal flora problems like candida? If she does I know it would help her immune system to clear them up. I just talked with the people at beeyoutiful today, to see if they carried anything I could use on the girls since this stomach flu we've had and the rep told me that she used Tummy Tune-up (which is a pro-biotic) on her colicky young (she didn't specify the age, but sounds younger than Lilly) daughter (with great results for the colic btw). She said she would just sprinkle a little bit on her breast before feeding, and when she was older she would open a capsule and sprinkle it right on her tongue. Anyway it might be worth looking into.

  4. So great to read people are interested and acting with positive deeds. Bless you, Lilly and all those people that send tips, best wishes and prayers that make you smile:-)

  5. Hey Lilly!

    Wasn't that roast good? Oh yeah. You don't have teeth to eat it! :-)

    Sissy Tabby