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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

Wednesday, September 15, 2010

Checked in

Weight check = 4 lbs. 10 oz.
Height = 20 inches

Yesterday we made it safely to Florida. Here's a picture of Lilly enjoying the ride. Thankfully she slept a good deal of the trip.

This morning we met with Dr. E, chief of surgeons. How refreshing to meet with a doctor who thinks like we do - that T-18 babies are worth helping! (They've performed the open heart surgery on several other T-18 babies at this hospital and all survived and are in their toddler years.)

Lilly had to get an EKG. (Look at the picture of her lying on the table and note all those wires on her - isn't it pitiful looking?) After that she had an Echo. Thankfully that wasn't as miserable for her. I got to hold her and bottle feed her while that was done.

Dr. E looked at the results and then told us she was in "horrible heart failure" and they want to help. He made arrangements for Lilly to be admitted into the hospital so that they can help get some weight on her. He also said her medication (Lasix) would be tweaked and another added. He suggested a feeding tube be inserted into Lilly's nose. He said that she might be ready for surgery next week or that it might be several more weeks.

We then checked Lilly into the hospital and she was evaluated further. The dr. there said that he didn't want Lilly on a feeding tube. That they were going to continue what we've been doing - add formula to her breastmilk to up the calories. They will monitor her for a few days. If she's increasing weight we will leave the hospital with her and come back to my aunt's home.

Poor Lilly has been poked and prodded and hooked up to all sorts of stuff. This last picture shows her hooked up to the monitors that are constantly on her at the hospital. Poor baby was just so cold and tired and kept getting disturbed. I had to keep telling her that whether she believes it or not we are actually trying to help her.

My husband is staying overnight at the hospital with Lilly and I came back to my aunt's house to take care of our other 2 children. I'll head back to the hospital in the morning. I've got to get my children into bed now and I've been thinking of how strange - and sad - it's going to be when I go to bed tonight. Ever since the day Lilly was born, I have been sleeping propped up with pillows and holding her. I don't think I'll ever be able to sleep normally again!


  1. Oh my dear precious children...would that I had some magic words.....
    God speed his mercy and grace and love to you this night and always

  2. Who is to say what is normal? Obviously you will never BE the same. And none of us that know her will be either. xxoo

  3. Saying prayers...constantly thinking about all of you!!!! love you!!!!

  4. please tell my little granddaughter that her mah mah is on her way!!!!!

  5. Much Love to you all...Holding you in my Heart always.