Saturday, May 29, 2010


I just had to write a quick post to say that our (and by "our" I mostly mean Dave's mom's) hard work is paying off. I just fed Lily twenty--yes, twenty--bites of banana sauce (as Gabriel puts it). Sixteen of those bites were open-mouthed. That means there was no fighting, no trying to pry her lips open. She just ate. It was a little awkward for her. She quickly moves her head back and forth for her mouth to find the spoon, like she does when she starts to nurse. But there was no fighting it!
Because Dave's parents are here, Lily is getting more opportunities to eat. Dave's mom feeds her most of the time before I nurse her, and Lily is getting at least three meals a day. The most bites I've gotten before the bananas today were fifteen, and that seemed like a lot. But here she took twenty and cooperated!
I wish I could say that we could cancel the g-tube surgery, but she's still not taking a bottle. I just can't continue to nurse her the way I've been doing. I'm too exhausted anymore. Maybe tonight I'll try her new "bottle." Think perm applicator with a tip on the end. Maybe I will post a picture of it soon.
I just can't help but feel like so many prayers have been answered here lately, and it looks as if the feeding prayer is gaining ground. Dear, faithful prayer warriors, thank you!

Thursday, May 20, 2010

June 9

Dave and I have made a very big decision for Lily, and June 9 happens to be the day. Lily is getting a g-tube. This has been a difficult decision, but we've come to peace with it for a few reasons. First and foremost, for Lily herself. Since she's still not taking solids or a bottle very well, nursing just doesn't seem enough. There are times when I'm feeding her every two hours. We want the best for her developmentally, and we're concerned especially about how just nursing affects her neurologically.

There's another reason we're choosing the g-tube, though. Nursing every two to four hours is very draining, especially when you've done it for a full year. Since Lily won't take a bottle, I can't be away from her for more than three hours. I've gone to concerts and a movie or two and school productions of Autumn's with Lily. Any time she gets fussy, I nurse. It usually works, but it's not always comfortable nursing in public places. I'm probably going to have to take her to Autumn's graduation, which she isn't very happy about, but I can't be gone from Lily for more than three hours, and I'm afraid that is going to last longer than the amount of time I can be gone. So Dave and I are looking at the bigger picture--the whole family--and seeing how it will be a positive for us all.

I'm a little afraid of this surgery. I know other babies with Trisomy 18 have had it at younger ages, but I bet it was a nerve-wracking experience for their parents. It just didn't sound good when the cardiologist said, "You just have to worry about her breathing. She might not remember how to do it." Scary.

But I'm hoping. I'm not just hoping that the surgery goes well, but I'm hoping that Lily will be less fussy (she's really getting better, but she's still fussy at night) and that she's sleeps better throughout the night because her belly will be full.

I have the utmost confidence in the doctor who will be doing the placement. He, too, was amazed at how well Lily is doing.

If you are a mother of a child with Trisomy 18, and you've been through this procedure with your child, please, if you have any information, email me and share. I've heard of the bolus feeds and the continuous feeds. Which is best? (Lily will continue going to a feeding specialist to work on her eating issues, so we will continue feeding her by mouth as well.) Do you use a pump? Is it portable? What problems have you run into? Is this easy to care for? I know nothing! I know that I should also be doing some research in the meantime, but where is the time? I'm stealing a few minutes just to type this post. Then it's off to the garage to get things in order for our move.

Tuesday, May 11, 2010

Here's the slideshow of our Trisomy 18 miracles that we played at Lily's birthday celebration. Thank you to all of the parents who allowed us to share their children with our guests. Please know that Dave and I did our best to handle this delicately so that your beautiful child could be honored through our presentation.

Before we showed the video, Dave explained how the song was written by his best friend, Michael Ray, and his bandmate, Ilhwa Gallo--both of the band Eleventh Hour. Mike has told me in the past that this song belongs to me and Dave. What a gift! After Dave's explanation, I shared how the first time I heard the song, I could only think of how I've "held" Lily up to God, saying "Consider this lily, Lord. I'll try to understand and accept whatever you deem, but please, consider this lily." I can't imagine anyone mother of a child with special needs not feeling the same way. For that reason, I dedicate this song to all the mothers out there who have a child with special needs and who have said, "Lord, please, consider this lily."

Monday, May 10, 2010


It seems Miss Lily's VSD is almost healed. Again, the cardiologist sees no reason to prescribe medicine and no reason for surgery! Thank you, God!

He said that when you look at her heart from one angle in the ultrasound, it looks moderate, but Lily's tissue is closing the hole, so when you look at it from a different angle, you see the tissue there, blocking the blood from entering into the wrong chamber. Wow!

And we don't have to see him again for another six months. In the past, it was every three months. Way to go, Lily!

So thank you for your thoughts and prayers. And a special thank you for the prayers specifically for her VSD to close on its own.