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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

Monday, November 22, 2010

It's like giving birth ...

We've had a busy last two days. My husband has a kidney stone. I have never seen him in so much pain. It reminded me of a woman in labor. My mother-in-law, who has had kidney stones, said it really is about as painful as giving birth. Last night my husband couldn't take it any more so he went to the emergency room. My stepdad was our knight in shining armor and took him, so I could stay home with the children. As they were leaving, Lilly was crying and her pump beeping because it was malfunctioning. Then when they walked out the door, my son burst into tears. A few seconds later my oldest daughter was hysterical. It was quite a scene. Thankfully the doctors gave my husband some good drugs and he was able to come home, pain free, later that night. Tomorrow he goes to the urologist as the stone may be too large to pass.

I was reminded what Job said: "Shall we accept good from God, and not trouble?” Job 2:10

Lilly felt like she needed to go to the hospital with her daddy, since he had stayed with her 24/7 when she was in the hospital for 23 days. But we convinced her she needed to stay home and cheer up mama. And she did. Today's picture is from last night. While waiting for my husband to call us with an update, I played the "boo" game with Lilly and she rewarded me with many smiles. (When I say "boo!" and touch my nose to her's, it really makes her smile for some reason. Sometimes she'll make a responsive noise too.)

Speaking of hospitals, I've had a lot of people ask when Lilly will be going back to the hospital for her open heart surgery. It will most likely be when the pulmonary artery band on her heart begins to get too small. (Her cardiologist is monitoring it. She has an appointment with him next Monday.) Or, it could be when she reaches at least 10 pounds. However, as slow as she gains, this seems pretty unrealistic to me. The doctor said that when a baby is at least 10 pounds, they have a much better chance of survival. Plus some under 10 lb. babies end up needing a pacemaker.

Lilly has really been moving her arms a lot more and putting her fist into her mouth. I think that's great. Though this afternoon she managed to hook her NG tube and yank it right out. Ugh. I had a hard time last time I put a new tube in. But thank God, it wasn't bad today.

Here's a tip for treating dry skin: put coconut oil on it. I did this with some horribly dry skin Lilly had over her eyebrows. Soon after putting the coconut oil on, I was able to wipe it off along with most of the dry, scaly skin. One more application and it was all healed.


  1. maybe the coconut oil would help her dry lips?

  2. good luck tomorrow bubba!!!! Those nights with all three out of sorts are sooo tough. praying for a calm night tonight. i love that pretty picture, lilly!!!! love you guys:)

  3. love your outfit! and your background scene

  4. I've been thinking of you all a lot and praying that Lily gets stronger and grows everyday. I had kidney stones when I was pregnant with my youngest son and so I sympathize with Bubba. Tell him his cuz says hello and sends love to all of you! Have a happy Thanksgiving!!!!
    Jackie Lincoln

  5. Sending our love to you all!!

  6. the boo game sounds wonderful. :)
    hugs to my big brother!!!xxoo

  7. Mallorie's MommyNovember 23, 2010 at 11:51 AM

    Oh no, I have kidney stones frequently and they are HORRIBLE! Hope that ordeal passes soon! Lilly looks terrific. Sorry you all had a rough night last night....maybe tonight will be better.