Thursday, December 30, 2010

That Still, Small Voice

Oh, how many lessons have I learned from Lily? I believe the list is never ending. One of the lessons that is in the spotlight these days is hearing That Still, Small Voice. . .and listening to it. I can't really say that I heard that voice when I was pregnant with Lily. Instead, I just trusted with blind faith. Nothing told me to trust. I just did. I likened it to the Nestee Plunge--just falling back into God's hands.

With Zilla, though, things have been so much different. I think I've said it before, but the baby's abdomen is measuring small. They keep telling us that we just have a skinny baby, but I've had ultrasound after ultrasound, and now I'm at the point where I'm having to do a kick count twice a day. Things like that add worry to this pregnancy.

But every time I worry, I hear this whisper--Trust Me. It's such a settling voice. But here's the rub: When I hear that voice, I realize that it doesn't necessarily mean that everything is going to be perfect. Instead, I know that it means that no matter what happens, God's love will wrap around us like a hand-knitted shawl. It will warm us in our joy or help to comfort us in our sorrow or help us endure in the difficult days.

It's been doing that for us with Lily all along.

Monday, December 27, 2010

Merry Christmas!

From our family to yours, Merry Christmas! (It's been a busy few days, hence the belated post.) A few updates. . .
Lily's vomitting has gotten better. After about three days with none at all, she did vomit once today. I really think it's sinus related, coupled with the possibility that Lily's stomach sphincter just isn't strong enough due to her low tone. I was told by Molly, one of Lily's NICU nurses, that if she's vomitting once a day (or less) we really don't have much to worry about. More than that, though, and we should pursue testing.

Lily had a VCUG done. The process itself was horrible for her. The techs tried at least three times to insert the catheter then decided to call in the doctor. Lily was not happy! The doctor tried at least three times before finally realizing that Lily's vagina has a fold in it; therefore, finally getting it right. That process was hard to endure. There was a part of me that wanted to scream enough! But there was another part that realized that we needed to know whether or not Lily's kidneys were refluxing. As bad as it was, I'm glad we went through it. Now I know, if Lily's urine needs to be tested, I'll insist that she get bagged instead of cathed. That test came back negative. Yeah!

As for Zilla, I had about two hours worth of contractions last night. Although I haven't dilated any, the doctor says it's possible that Zilla could be here before the induction date. That would be nice not to have to be induced.

Here are a few pictures we took over the holidays. It's hard to believe that this is our second Christmas with Lily. It's also hard to believe that in a few days, she'll be twenty months! We have so much to be thankful for!

We finally caught the cookie monster!

My mom got Lily this toy. I love it because it flips so Lily can look at it while lying on the floor, she can stand to play with it, or she can sit like she's doing in this picture. Lily doesn't play much with toys, but today, while on the floor, she was patting at the pieces that hang down. It was such a sight to see!

Christmas Eve was spent at my mom's. This is another toy that Lily got, but she wasn't interested in the unwrapping. We tried to wake her up but to no avail. This toy can be put on Lily's crib, and she can use her feet to play the "piano." Lily LOVES touching things with her feet, so I just know she'll love this toy.

Lily loves giving Gabriel hugs!

Tuesday, December 21, 2010

Poor Mary

I love The Christmas Story. I love to think about Baby Jesus and His humble birth and contrast that with the King he actually was. I love to think that the stable is alight with a warm glow and that everything is so peaceful. The visitors come and bow down, quietly contemplating the Savior before them. They just know that before them is no regular baby.

But there's a part of me that knows this story has been romanticized, and I feel that sentiment now more than ever. The other night, I just couldn't help but think about Mary and how pregnant she was on that trek to Bethelehem. How uncomfortable she must have been, how painful labor had to have been, how exhausted she had to have felt. We hear none of that in The Christmas Story. Perhaps for a reason, but I'm not here to discuss that.

I just can't help but feel a deep appreciation for what she must have gone through. Although I am due January 14, as far as we know, the doctor is going to induce on January 7. It's hard to get up off the floor, let alone to get out of chairs. I have to roll out of bed, and my arms help pull me up because my legs just aren't working like they should. My hips hurt, and I just. . .feel. . .old. The other night, I went to hang out at a restaurant with some girls from church, and we sat on hard barstool-type chairs. I was there for a little more than 2 hours. Boy, did I pay for that the next day.

So I can only imagine what Mary experienced. Poor Mary.*

*As a side note, as any mother will tell you, and I'm sure Mary will too. . . It was all worth it.

Saturday, December 4, 2010


I've been wanting to make this post for a few weeks, but I've been sitting on the topic, trying to give it the eloquence it deserves.

Motivation interests me. Not so much the type that gets people up and moving, but more the motivation that makes people tick. One such topic that I have trouble understanding is when people--especially the medical community--have such a callous attitude towards children with Trisomy 18. I just can't understand how a person who has dedicated his or her life to helping people can turn his head and refuse to treat this child with the dignity he or she deserves.

A few weeks ago, I happened upon a blog written by a medical student. The author of this blog has created a "study guide" that relates certain medical issues with musicians. This blog I read related Trisomy 18 to Eddy Money. He hoped he wasn't going to hell for such a post.

I left a comment to this author and told him that I didn't think he was going to hell--that as a mother of a baby with T-18 I wasn't offended--and that I thought it was great that he could create a mnemonic device for his studies. I briefly told him about Lily and the fact that some of our T-18 babies didn't fit the mold of statistics and asked him to keep that in mind when he became a doctor. Little did I know the impact that comment would have.

A few days later, I received this email from a girl named Laura.

I was visiting my friend's music blog site and I came across your post. After reading through your blog, and watching Lily's videos, I am left without words on how to thank you. She is beautiful. I can only imagine the struggles you must be going through and have gone through. As another student at Jimmy's university I have become all too familiar with the crazy ways we find to remember things. Every disease we learn gets filed away nice and cleanly into our inner-brain disease archives. So many things get shoved in until these diseases become just words. We forget that every disease will be associated with a patient. We all come in with such an intention to do good and help as many people as possible, and then throughout our years in school, with constant reading, tests and lack of human contact something gets crushed a little. Recently I have been so confused about what I am doing all this for. At this moment there really doesn't seem to be any light at the end of the tunnel, because nothing but books alone help people forget love for humanity. Then I read your blog and found that love again.

Lily is amazing and wonderful and already a very powerful woman!
More med-students need to become aware of things in a much more personal way.

Needless to say, I was touched. I always hope that this blog will help others who have a child with T-18, living or in utero. Never did I imagine Lily's blog would have reached out to someone in the medical community.

Laura and I exchanged a few emails. In those emails, I explained to Laura our reason for giving Lily the chance to live and what we dealt with from some in the medical community, among other things. I found two interesting things out (among other things): 1) that Laura's view of abortion has changed, and 2) that Laura and her friend Jimmy (the author of the above-mentioned blog) have been talking to their fellow students about Trisomy 18.

I have been so impressed with this young lady. And I want to say that it's not because she has changed her view on abortion. It's more that she has been willing to open her heart and recognize the need to do so at a time when books and intelligence were shadowing her heart from the true reason she is pursuing the medical profession--her love for humanity. It makes me wonder how many med students this actually happens to.

In Laura's emails, I have gained a bit of compassion that I had perhaps lost in the medical community. I have found a bit of understanding in what "motivates" the thoughts of some of the doctors involved in Lily's care. Some of that makes sense now.

Laura has motivated me as well. There's a program in South Carolina that connects medical students with families of children with disabilities. This program is designed to move medical students from the "textbook definition" of a disability into the reality of life with a disabled child. I had been wanting to get involved with this program but always put it off. Since communicating with Laura, I have contacted the organization, only to find that the program doesn't exist in the Charleston area, but they see a need for it to get set up. Hopefully, I can be a catalyst for our area's program. There's definitely a passion in my heart for it.

And to Laura, thank you for opening my eyes to the life of a medical student. You are a remarkable young woman with such an impressive depth of understanding. And thank you for recognizing the beauty of our little ones with Trisomy 18. You have so much to give to the medical community.