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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, February 3, 2011

Sneaky, fussy Lilly returns

When Lilly started fussing this morning, I pulled her blanket back, there was a little bare foot without a sock all still next to the foot with a sock. Sneaky Lilly is back to her old tricks!

Last night Lilly got really fussy. We were pretty sure she had a tummyache. They had restarted adding the formula (for extra calories) into her breastmilk. She has no problems digesting breastmilk, but formula is problematic for her at times. (And this is a brand she's not used to.) My husband actually got quite riled up about the whole thing and said we would demand they not add any more formula. That Lilly had enough problems trying to get better and didn't need stomach pain. And that eating should be pleasureable for her - not painful. (He's actually even more laid back than I am so I knew this was a huge deal to him.) So we called the nurse in and she was just fine with doing straight milk.

Lilly is still quite fussy today, but judging from the number of diapers, poor baby is still cleaning out. I am praying she feels better quickly. I hate not being able to help her. (Though I'm trying everything to soothe her.)

God is answering our prayer about Lilly's heart! Dr. R, the cardiologist, came in with a smile and said he was "very pleased" with Lilly's progress. He said there was "definite improvement." The fluid is clearing up and the heart size decreasing. They will soon cut back on the Lasix and see how Lilly tolerates that. As an aside, her pulmonary artery band was not affected at all by any of this and is still fitting and doing it's job nicely. Dr. R feels we should be released "within a week."

Last night Lilly was switched to a lower type of oxygen and set to a lower level. She's doing great with that.

The speech therapist came in this afternoon. She said she had been pondering Lilly's case and decided to first do a simple test with squirting water into Lilly's mouth and seeing how she sounded when she swallowed it. (She used her stethoscope.) She did this several times. Unfortunately Lilly was still being fussy. So she wasn't able to make an accurate enough conclusion. But she thought Lilly was aspirating some. Not what we want to hear since we're hoping to get her doing mouth feeds again. The therapist talked to the doctor and he agreed with Dr. R that Lilly is recovering well. Well enough that she can be tested tomorrow to check for possible aspiration. (She'll be taken down to radiology around 9:00 in the morning to begin.) I'm looking forward to finding out what the results show and then moving towards whatever that is, so Lilly can get off the NG tube. Having a g-tube (feeding tube) inserted into the stomach is apparently the most common surgery for a Trisomy 18 baby. I am praying that the test will show that Lilly will be able to eat normally by mouth!

Fussy Lilly keeps alternating between fussing and sleeping. I'm also wondering if she's getting really bored. Sometimes when she's fussy, going outside or getting a different view helps. I guess Lilly and I need to work on being more patient!

"My brethren, count it all joy when you fall into various trials, Knowing that the testing of your faith produces patience." - James 1:2-3


  1. I love to read about Sneaky Lilly!! Welcome back, Sneaky Lilly. We've missed you!

  2. Yea, sneaky Lilly!!!!! Come home to me!!!!


  3. Sneaky Lilly may be more sneaky than you know.
    Could she be like "Tabitha" (not the one we know)
    but the one on Bewitched?

    The hospital staff better watch out for Daddy Principal. Maybe he should bring that paddle he has at work to the hospital.

    Tears in my eyes reading about our girl and how well she is doing. And................DON'T EVER DOUBT YOUR HELP. I know you want to take her discomfort and pain away, but she has her mommy and every child who is blessed with a good mommy knows no other comfort that is better.

  4. Welcome back, Sneaky Lilly! Glad to hear she is making improvements!


  6. Poor Lilly, sorry she has stomach pain. Still, it is so WONDERFUL to hear that her heart is better! :D

    I am wondering if sneaky Lilly kicks off the same sock every time, or if she changes it up. :)

    Very excited that there is talk of going home!

  7. I'm very happy to read how Lilly is improving:-)
    Does Lilly have some moving musicmobile or soft toned musiclight hanging above her bed? Maybe she likes it and it can help here against getting bored?