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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, February 9, 2011

A bigger American girl doll

Weight check = 8 lbs. 5 oz.

Check out the difference in these two pictures of Lilly with my older daughter's American Girl dolls. She was only a few weeks old in the first, and was 18 inches, the same height as the dolls. Now she's 22 inches and can stretch her legs normally and wow - what an amazing difference!

When the doctors started up Lilly's feedings again at the hospital, they waited a few days before adding formula into the breastmilk again. (This is for extra calories.) Lilly reacted with such bad stomach aches that we asked them to quit. The plan was that we would resume using the organic formula she was more used to at home. However, we still have not done that yet. Yes we know it adds extra calories, which she needs. But, she is just doing sooooo much better without it. No stomach aches. No spit ups. I've been able to increase her milk pump to 22 MLs/hr. and she's handling it perfectly. I've also been able to quit giving her the Zantac medicine. So I'm going to go back to weighing her every day or so to be sure she's still gaining. Lord willing, she will keep gaining weight at about the same rate, without formula.

Several people have asked if Lilly came home from the hospital with a pulse ox machine. (Measures her heart rate and breathing.) No she didn't. The doctors decided that she didn't need that close of monitoring. I was glad as it can be stressful to just sit and stare at that monitor. Especially because it malfunctions so much with Lilly. At both her hospital stays, the nurses seemed to be constantly readjusting the lead on her because it wasn't picking up right.

I am listening to Lilly's heart and lungs everyday now, with a stethoscope, so that I can spot future problems inside her more quickly.

Unfortunately for me, Lilly seems to be following the hospital sleep schedule. She stays up late and wakes up several times during the night. I guess she thinks it's time for meds or to get her temperature and blood pressure taken.

I've been trying to adjust to putting the oxygen on and off Lilly thoughout the day. I felt a bit grumpy about it this morning. It's enough to get her downstairs with her milk pump equipment. Now I have to turn off the big oxygen tank, unhook her, and then hook her back up downstairs when she goes back to sleep. I don't mean to complain, but I sure would like to be able to just pick up my baby and go! But I am grateful that the milk pump and oxygen are keeping Lilly alive and comfortable. So as long as we don't have a fire or something where we have to leave the house really fast, I guess we'll be just fine.

So, how many people does it take to take something out of the oven? In our house it's two! Today I was baking and I was "wearing" Lilly in the moby wrap. I needed to take something out of the oven and put it on the table to cool. It was just a bit too far with Lilly attached to the pump. So I had to have my older daughter quickly pull the pump for me as I hurried the hot item across the room. I had a thought that it would probably have been pretty funny to have that on video.

On a final fun note, Lilly has been drooling the past several days. Real baby drool! It's so funny to think of her getting a teeny tiny tooth. She seems to be really enjoying her slobber, sucking on it and blowing bubbles.

"Blessed is the man who remains steadfast under trial, for when he has stood the test he will receive the crown of life, which God has promised to those who love him." - James 1:12


  1. she looks like a china doll to me with those round cheeks. :)

  2. love to see her little legs stretched out.

  3. Lisa, I'm so glad she's doing so well. Question? Is Lilly home on O2 on tanks only or on a concentrator (using the home electric). If she is, then you'll want to call Progress Energy and notify them you have a medical device dependent on electricity. This puts you at the top of the list if there's a power failure.

    When Michael came home from the hospital we had him on O2 for a year (with a concentrator and a tank backup). During one outage we had power four hours before any of our neighbors.

  4. I'd really like to help your family by providing a meal. You are working so hard and doing such a great job, it would be my pleasure to serve you all. I'm going to email him and see when would be a good day. It's wonderful to see Lilly with her legs stretched out.

    Stay strong!


  5. What a great verse for today!

  6. Cute pictures, Lilly!

    Your teeth are going to be the size of gains of sand!

    Tab sis