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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 2, 2011

Homework for Lilly

It's 7:30 p.m. and we're still awaiting the results of Lilly's echo from today.

It's been a calm day. Wet noodle Lilly perked up some today. She slept all day until 5:00. During the day she pretty much only woke up when her tummy hurt and then had a dirty diaper. (They started adding formula back to her breast milk last night, and it just doesn't make her tummy as happy as plain breast milk.)

The hospital dietitian came in to see us. She said Lilly is big enough that we need to up her Mls of milk through the pump from 20 Mls an hour to 22. And then every 2 weeks increase it again.

We also got a visit from the speech therapist. And no she's not teaching Lilly how to talk. She helps with feedings. I was glad to talk with her. I told her that I had ordered Lilly a Habermann feeder to try since she had done so well drinking from her syringe. (A big thank you to my friend C.S. for giving me Habermann information shortly after Lilly was born. I saved it and then it was right there when I needed it.) She was really glad to hear that as she was just getting ready to suggest it. She said she would find one and then bring it in tomorrow and work with Lilly and I with it. She wants me to use that some with Lilly before trying solids. (I had told her I'm ready to try rice cereal and avocado with Lilly.) Because Lilly doesn't hold her head up regularly and has poor muscle tone, we talked about feeding positions for when she does try solids. And the consistency shouldn't be too runny nor too thick.

She also gave Lilly some homework. She brought Lilly a preemie sized pacifier and told me to offer it to her and report back on what Lilly did with it in her mouth. We've worked on that a couple times since Lilly woke up. She seems to like biting it. She also pushes it out with her tongue a lot. The last time we tried it, she sucked it for a minute. All of this is good. All things to get her feeding by mouth and off the NG tube again.

Yesterday I felt a little stir-crazy in this hospital room. I ended up pacing a lot. I am catching up on reading but feel I can only do so much. Today I decided I needed to do things differently. This morning I did "games" like reading a page, then doing 100 of my stomach exercises. That kept me busy awhile. Then I remembered something my dad said once. He said if he were ever in a place like prison, he'd keep busy writing. I really enjoy writing so I spent 3 hours this afternoon writing drafts of future blog posts of a series I've been wanting to do about my pregnancy with Lilly. (I'll post those once this hospital ordeal is over.) Anyway, it was extremely gratifiying to do and helped the time pass. I also find I have a lot more respect for my husband as he stayed with Lilly 22 days straight at the Fla. hospital, while I got to at least leave at night. Now here he's going to work during the day and coming back here for the night. I haven't left here since Lilly and I checked in Saturday. The days are all one blur.

"My soul, wait silently for God alone, for my expectation is from Him. He only is my rock and my salvation; He is my defense; I shall not be moved. In God is my salvation and my glory; the rock of my strength, and my refuge, is in God. Trust in Him at all times, you people; pour out your heart before Him; God is a refuge for us." Psalm 62:5-8


  1. do your homework baby girl:)

  2. Good job, Lilly!

    Do you get stickers on your hands when you finish school?

    Just kidding. You could NOT do that. Your hands are WAY, way too small. :)

    Your Tabby

  3. I understand the whole needing to write thing! My son is in the emergency room with a severe headache and I'm feeling the need to post as they run some tests. Keep strong, Mama, you're an amazing lady.


  4. Okay...Sissy Tab. Lilly could have those tiny smiley face stickers on her hands.

    And Lisa, when was your dad in prison? Ha Ha. I guess his experience is from having clients in prison.

    I guess your pregnancy blog will be like a "Sequel".

    And as for Frank....was it ONLY 22 day? It seemed like longer. He must have really refined his patience then.

    Knowing you like I do, I KNOW you are stir crazy.
    I spent so many days in the ER and hospital with our aunts and Nanny, so I do feel for YOU, although I know how much grit you have and we are talking about a little baby beginning her life as opposed to elderly treasures at the end of theirs.

    One more interesting note. Moriah's friend who had the Invetro is due on Feb 6th. today the doctor told her NO WAY. He estimates the baby to weigh between 10 and 11 lbs so she will be having a C-section on Friday. He will probably weigh more than Lilly at birth. Poor girl. But a Happy one.

    Love you, miss you, praying for you,Frank, and Lilly Bell.

    xoxo Shisshy

  5. Lisa, glad to see that Lilly is doing so well! That's absolutely fantastic. I can appreciate the stir crazy feelings. You are Lilly's best advocate and I know you want to be with her 24x7, but take it from me, you need to be sure that you're taking care of yourself both physically and mentally. That means taking a 5 minute break, walk the halls of the hospital, let you mind totally relax and go to a place that's not medical. This gives your body some light carido and let's your mind recharge. You'll be surprised what 5 - 10 minutes of this can do for you when you come back.

    Been there and this worked for me.

    Again, my entire family is thinking of you, Lilly and your entire family!

  6. lisa try deep breathing yoga. instead of meditation, let your mind go blank. as my instructor says, "let your thoughts be like a train passing in the distance." also do your breath prayers.

  7. Awww shes precious! how is she doing? My prayers to you & your family..