Sunday, April 12, 2009

Happy Easter!!

Hey everybody, Happy Easter!! I hope that you had a great weekend hunting for the easter eggs that the easter bunny brought for you. I can't wait to do that. I am soo happy that the Easter Bunny didn't forget us kids here and stopped by the RCNIC. He (or wait, is it a she?) Hmmm....anyway, the Easter Bunny brought me a stuffed animal and a book courtesy of the Ruth Lyons Foundation. I love the stuffed animal and can not wait for Daddy to read me my new book.

So, what's new? Since my last post I have had a number of tests so that the doctors can figure out what in the world is going on in my tummy. On Friday, Daddy came to see me early since the doctors ordered a berium enema. I really don't like that test because it is very uncomfortable. So, we went downstairs to have the test. Daddy says that I was a very brave little girl and that he is super-duper proud of me. The doctors were looking for these things called "strictures" in my belly but they didn't see any which is a good thing. So, since I did so good on the first test the doctors ordered an Upper GI test. That's the one where I have to swallow the chalky contrast stuff and they take pictures of my belly as it moves through. That stuff doesn't taste all that great. I did great on this test too. Daddy says that all this is great news but that it still leaves us a bit in the dark as to why my tummy keeps acting up. The doctors seem to think that I may just have an immature belly from the two times I had NEC. Sometimes when preemies get NEC, daddy says that it can cause the belly to mature much slower than other babies'. They still want to run one more test. They call it a biopsy. Daddy says that it won't hurt but that it will be about as uncomfortable as the berium enema. So, I don't look forward to that test.

Today was a pretty good day. Daddy and my mimis went to church and then came to see me. Mimi McHugh brought me a couple of new books with bunnies as the main characters. Daddy hung out with me for a long time today. Long enough to "kangaroo" for like two whole hours, read and nap together. You know that totally ROCKED!! Then Daddy topped it all off with not one goodnight book, not two goodnight books, but three totally awesome goodnight books. Daddy read me all the books that Mimi bought for me. I fell right to sleep. Daddy talked to me a little longer, sang me our goodnight song, tucked me in, gave me kisses on the forehead (just like he used to do for mommy) and wished me sweetdreams. Daddy and I make a great team and I just can not wait to get home for good so we can get on with our lives together.

So, that's about it. I am gonna go get my beauty sleep and get ready for my test tomorrow. Could you pray for a good result? I know that you will. Thanks for everything. Have a great start to the week! Blog to you soon!!

Love you all, Lily


  1. Lily,

    You have been and will continue to be in our prayers! Good luck on your tests tomorrow. We will be waiting to hear the results. You hang in there little won't be long before you are home with your Daddy and Tucker!

    With much love and prayers,
    Sandy, Jessica, Clyde and Austin

  2. Hello precious Lily -

    Happy first Easter! I know this isn't how you and your daddy planned to spend the day but it sounds like you made the best of it. I can't wait for next year when that Easter bunny will be delivering a big old basket of goodies to you at HOME.

    Love and kisses,

  3. sweet lily you are soooo are in our thoughts and prayers the pangallos

  4. Hi Lily and her devoted Daddy. You don't know me... I'm a friend of a friend who found her way to your blog via Facebook. I read every post last night and cried the whole way through. Cried and prayed.

    I have six little children of my own and when I try to imagine what this all must be like for Sean, I'm overwhelmed. I am so impressed by his strength and dedication. That must be what you get when the Lord adds His grace to someone's own character. What a beautiful witness that makes for all of us!

    Speaking of beautiful, Lily could not be more precious! Such a strong, sweet little girl. I bet she gets a lot of that from her dear mommy. I love the photo of Lily and her daddy looking at each other.

    I will be offering up all of my prayers, sacrifices and sufferings for Lily, her father and her extended family, who must rejoice and grieve at the same time. Lily has captured my heart and I wish her all of life's blessings.

  5. Lily and Sean,

    Happy Easter! Sorry that you guys are back at the hospital, but it sounds like you're hanging in there. What a fighter Lily, just like your mom. You are so beautiful and looking more like your mom with each picture. You guys will continue to be in my prayers. When you come home and get settled, there are many nurses from Good Sam that will come and visit. God Bless!!!

  6. Lily..

    It is a privilege to be in the same family with you and your daddy. Love you bunches.

  7. Hi Lily,

    I love the pictures, especially the one of you with your Daddy. It's awesome that you're so alert and making eye contact now. You were so funny on Thursday when I got to see you. Daddy was reading you a really funny book and you were looking off in the distance, listening but not looking at the silly pictures. I'm so glad that I got to see you - I fed you, changed you, and rocked with you!

    You are amazing, a true reflection of your Mommy! You make me so happy, Lily! Gwyn, Mike, and I continue praying for you all the time. Keep up the great work!

    I love you tons...XOXOXO,

  8. Hey Lily!!
    Hope you are enjoying being home with your dad!! We miss cuddling with you in the RCNIC, but are glad you get to be home with all of the wonderful people that love and care about you! Keep growing!
    Nurse Cayse