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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

Tuesday, September 21, 2010

Have you ever had blood drawn from your head??!!

Weight check = 4.9 lbs. (up 45 ml)

Having Lilly hooked up to the pump for continuous feeding seems to agree with her. She's getting more rest and just seems more content. She did have a couple spit ups but only one bad one. The last picture in this post shows her hospital pump (bag of milk is hanging in the top left area).

She rested comfortably on me for much of the day. This first picture shows Lilly in her favorite position. (Man those arms look skinny! She has no problem waving them around though!)

This second picture shows that Lilly still has all her beautiful dark hair and I'm pretty sure it has been growing in some more while at the hospital. I can't wait until I can fix her hair into puppytails one day. :)

The Vasotec medication was increased because Lilly's blood pressure is still up.

We found out today that Lilly was very anemic when we brought her to the hospital. The dr. ordered that more blood work be done to re-test that, along with some other things. Oh joy. So poor Lilly had to endure being pricked a number of times to get the blood they needed. She bleeds well but clots fast. The worst was when they pricked some of the veins in her head to draw blood. She was upset enough that she had a huge spit up and her breathing set off alarms. She also had to have an IV inserted because they want to give her blood (which would hopefully make her feel better and give her better color).

As I looked at her on the table with them drawing blood from her head, with a rubber band around her head squeezing it to help with the process and I just wanted to cry. I started thinking "What are we doing? Is this right? How much will she have to endure? And does she want to?" If she were able, would she quote Psalm 42:2 to me? My soul thirsts for God, for the living God, when can I go meet with God? I started feeling torn. As a Christian I see the value in Lilly's life and want to fight for her to have the best chance she can. And yet I know that it would be such a blessing for her to leave the misery of this life on earth. What is right? I don't want to make such a decision. I'm much too selfish and want her here with us.

Today we met Dr. C, the surgeon that will hopefully do the needed open heart surgery. He is very concerned about Lilly's terribly slow weight gain. He doesn't want her to die of heart failure and he doesn't want her to die on the operating table because she's not strong enough. He wants to give her more time to grow though how much time is safe? So he began discussing a possible temporary fix. That would be to insert a pulmonary artery band (PAB) into her heart. This should help keep the fluid around Lilly's lungs down while she hopefully gains more weight.

If this is done, she will be put under, and then the band will be inserted through the side of her chest. She'll have to be on a ventilator during the procedure and once again, there is a great fear that she won't be strong enough to breathe on her own after. And then what? I hate facing this question again. (How much do they intervene to keep her breathing on machines and for how long?) Please Lord - no matter what procedure it is - please let Lilly breathe on her own right after.

If Lilly has a good night and good report for Wednesday morning, then the hospital plans to release us. We'll continue Lilly on the continuous feeding for 2 weeks. The kids and I will stay here in Florida so that Lilly can go to her appointments and have immediate help if needed. (I fear that the hospitals back home would refuse to treat her.) My husband would fly home so he can go back to work for a week before fall break and take care of things at home. We decided flying would be better than driving in case he needs to get back here quickly for an emergency.

A random thought for today: I wonder if Jesus or the apostles ever healed a trisomy 18 baby?


  1. such sweet pictures...praying for lilly and the decisions that ya'll have to make for her every day!!!! love you

  2. I know its tough and your mind is riding on the fence. But what exactly ARE the options? Do what you are doing or let her slowly die? That doesn't seem like an option to me.
    I love the pics today. She is a beautiful sweetheart. And yes, those are some skinny arms!!! LOL

  3. Love the photos.. and pray nothing more than a miracle for Lilly, I pray for comfort and rest as well as strength.
    What a great mom you are and I pray in your heart you will know what needs to be done..

  4. Lisa, I don't know if you even have time to read our posts, but I just have to share with you again. This is the responses I have had from my friends from around the world ... and this is just today... it happens every day!

    Nikki: I really shouldn't read these first thing at work... ruins my makeup. BUT isn't that the sweetest picture of Lilly???
    Lisa, Joy, and 2 others like this.
    Louise: ‎*passing tissues* ((((hugs)))) ♥ ♥
    Nikki: ‎*sniffing* thanks, dear.
    Louise: no consolation for you but I read it every day too and it does the same to me x Brian: She's a fighter! Definitely hoping for the best!
    John: My heart goes out to Nikki and your family...... I have a neighbor that is an Neo-Natal ICU Nurse...... I do not know how she does it...... takes some speciial people to care for these wee little ones fighting so hard for their lives....... we will keep praying for all involved.....
    Cheryl: Nikki, I imagine this is so hard . . . your family and your faith is amazing, that must be heart-wrenching to see, to know, to understand. I feel so much empathy for what you're going through, what that sweetheart is enduring. I'm sending... you the biggest rays of sunshine from my heart right now . . I hope you can feel the love from here. I'm reposting, as I always do, asking for prayers, as I always will. I'm a steadfast believer, and God's plans, although unknown to me, require one thing, my faith! Love and hugs, C.
    Donna: ‎"I'm praying for Lilly and your family"... Love and Hugs to you all.
    David: she's a fighter i can tell
    Janet: I love this picture...She's a little angel.
    Lynda: I am glad I am at home tears everywhere, Lou I need some tissues too. Hugs Nikki from the other side of the world.I am glad Lillies Mum is christian it seems to be giving her some much needed comfort.
    Nikki: ‎*passing the tissue box around the world*

  5. Our Father who art in heaven, Hallowed be thy name, we beg your mercy for our tiny Lilly, our beautiful gift from you.We ask for your care, hold her in your arms.We ask to keep her a long time and that she doesn't suffer. For she is our joy. And we ask for you to comfort our hearts. But above all, Thy will be done.
    We understand that you know all things.
    In the name of thy blessed son and our savior, Jesus Christ.