Monday, July 27, 2009


So we decided not to take Lily to the clinic on Saturday or Sunday. Lily's doctor wasn't there, and I'm just not ready to risk someone who might not be familiar with T-18 to assess her. I think my biggest fear with that is the "incompatible with life" attitude I'm afraid I'll get.

But after at least an hour's worth of crying each night for the past week, I had to do something, so I took Lily to the doctor today. He thinks it is colic. Apparently, colic comes on at night, and it could last anywhere from 1 to 6 hours. Gulp. Just to make sure it's not reflux, he suggested giving a tsp of Maalox before her episodic feeding. Problem is, we don't know when the episode will occur. Sometimes it has come at her 9/10 feeding; sometimes, the 2 am feeding.

Lily is now at 7 pounds, 9 ounces. At three months, she weighs exactly what Gabriel weighed when he was born. I told the doctor that she should be gaining weight. She eats all the time--every three hours. He reminded me that her stomach is small and only capable of holding two to three ounces at a time. I guess that means that she'll be eating every three hours for a while. Guess I better get used to feeding every three hours. Another gulp.

Lily has her next cardiologist appointment on Thursday. This is the appointment where we hope to find out whether or not the hole in her heart is closing. This is big, so if you don't mind praying, we'll gladly take those prayers!

It's big for a few reasons. The obvious--Lily's life. The not-so-obvious--it will play a big part in determining whether or not I go back to work. We've got a lot of decisions to make within the next week or so, so if you don't mind more praying, we'll gladly take prayers that help us make the right decisions for Lily's care. (Dave just told me that I'm asking a lot of my readers--two prayers in one post. :) I know I am, but you've been a great network of supporters, and I truly appreciate all of your support. It's nice knowing that you're out there.


  1. Prayers are flowing for you...especially glad for direction on what prayers will help you most right now.
    Love to you,
    (Noah's mommy)

  2. Hello Jill...I found your blog through another and I am completely amazed at your baby Lily. I know you are so proud of her. I put you on my favorites so that I will see this often and remember to pray for you all. God bless you. I will be keeping up with your journey and praying accordingly.

  3. My youngest had colic and reflux, so I know how much "fun" that can be. I will pray it resolves soon. I'm glad there are things they do to help with it now--- they didn't 17 years ago. My child didn't double her birth weight until she was 16 months old. Thank God she was a nine pounder at birth. Well, I'm thankful now, not so much at the time. LOL
    Anyway, Lily seems to be doing better than expected except for this. We'll just have to pray this off her. God bless.

  4. The Chinese belief infants get 'wind' in them and the accumulation builds up and manifests as colic at night , hence the term 'evening colic'. Vera had bad colic up till about 8 months. Crying for like 4-5 hours and would be inconsolable. A warm tummy oil does the trick to calm down the tummy. It's traditional but it works.

  5. It helps to know what to specifically pray for and you can't ask for too much.Ask anytime.

  6. I'm out here. :) I still love seeing your girl. In a strange way, and maybe a way only my husband mitch and i can understand, it reminds us that we didn't give up on our daughter...she had the full trisomy "jackpot" with 5 heart defects and kidney issues. But we also never have had the "why didn't OUR daughter live" moment, to compare to Lily. I just love SEEing her and seeing a little bit of my Cana in Lily's sweet face. it comforts me. does that make sense?

    praying praying praying...


  7. Jill,
    First of all I want to say Thank you... for the prayers for Grayson. I know that we got so many prayers sent up because of you and Lily. She is so beautiful, and I know you cherish every second. Hold her tight and kiss her, enjoy EVERY second... I would give anything to have Gray and Kinsey back. To just get to hold them again.
    Lily is such a strong little girl, and I will pray for her strength. God blessed you with her for a reason.
    I will be keeping up with Lily on your blog...and praying for all of you daily.
    Please keep us in your prayers as well.