Wednesday, March 31, 2010


Lily continues to blow me away. The other day, she had a follow-up appointment with her GI. He issued some bloodwork to be done to check on her liver numbers and her hemoglobin. Call me a bad mommy, but I just couldn't make myself give Lily her iron. I was so afraid of constipation. While she doesn't go every day, she's not hurting to go, and the GI said some breastfed babies don't go every day. Still, he said wait until the bloodwork comes in and we'll see where to go from there. The bloodwork came in today, and I'm happy to report that all was within normal levels. No elevated liver numbers. No need to give iron. Praise God!

As for the liver, I blame the Zantac on that one. I think the GI thought I was crazy for saying that, but I stood my ground. And look at the numbers now that she is off the Z!

We're gearing up for Lily's birthday, trying to decide which direction to go. Luckily, my good friend, Momma Ray, is going to help me with that one. One year old--I just can't believe it!

As for feeding, the feeding specialist says every week that Lily is making progress. Today, I was feeding her some mommy milk while Gabriel and I ate lunch. Lily just sat and watched him eat, very intently, so Gabriel and I made a game out of it, explaining to Lily what Gabriel was doing. Gabriel got a kick out of me telling Lily that he puts the food in his mouth and chomps on it. He must have asked me to repeat it a hundred times before lunch was over. I think I'm going to take a container of applesauce with us when we go to the feeding specialist so Gabriel can eat and Lily can watch him. She honestly is so much more receptive to the spoon that way.

It might sound boring, but feeding is our biggest issue. Since she's almost one, it's a big issue. I mean, she's got to get enough nutrients in her. But, my, how fortunate we are. How can I thank God enough?

To see Lily's eyes light up, to watch her follow us across the room, to hear her sweet little cooing sounds (especially when she's making them because she's found her fingers and is trying to calm herself down), to feel her excitement when we play. . .aaaahhhh. She watches her hands and knows that her toes are her toes (even though she isn't playing with them yet). She likes to reach up and touch your face or give high fives. She adores the two most important men in her life--her daddy and her brother. She still doesn't like to sleep much at night, but she has good moments and bad moments with that one. I love for her to just sit in my lap, lying back against my chest, the two of us just chillin'. Aaaahhhh.

Tuesday, March 23, 2010


I am about to do something I never thought I would ever do. I'm going to move away from home to the beautiful city of Charleston! Dave recently got a job where he will be teaching at a private school next school year, and he might even teach summer school, so we'll be moving in the next few months. I've always lived in this little town. Actually, I've always lived within one mile of where we live right now, except for my second grade school year when I lived about three miles from where we currently live.

I'm excited and scared and sad all at once. One of my biggest concerns is replacing Lily's doctors with doctors we feel just as highly about. And then there will be the therapist changes. Lily loves her therapists! I hope we can find some who are just as loving and knowledgeable.
But there are other things to worry about right now. Like selling our house and finding a new place to live. (No, we still haven't sold our house.)
So if any of you know about the Charleston area--especially the doctors--please, let me know.
Old picture--Lily making a snow angel

Sunday, March 7, 2010

What would I do?

A few years ago, Dave and I went to China for a month to teach English. That's where we met Tracy, our classroom interpreter. The other day, Tracy emailed me to find out what I would do in her situation. She is 32 weeks pregnant, and a recent ultrasound found that the baby has only one artery in its umbilical cord. Tracy didn't know what to do--terminate or let her baby live. I'm assuming that because she is Chinese, she has to consider her country's one child policy.

She asked what I would do under her circumstances, and I have to admit that her question really got me thinking. I told her Lily's story and why Dave and I chose to keep her. But with our choice, there was that background information that we could have more children. But what if Lily was the only child we could have? Would my faith be strong enough to choose life for her? Of course, I would hope so, but I can't even begin to answer that question because I've never been faced with a limitation like that.

If you would, please pray for Tracy. She and her husband have decided to keep their baby. Please pray for peace of mind, that the fact that the doctors have not been able to find any other problems is evidence of a healthy baby, that God's miracle shines on this family in the way He sees fit.

Wednesday, March 3, 2010


Lily is doing much better. Apparently, the retraction was caused by the stuffy nose again. Still, it was better to be safe than sorry. She's still got a yucky sounding cough that comes more from when she chokes on her spit or on milk than from just a need to cough. Yesterday, she went to have what I thought was going to be another ultrasound. It ended up being an upper GI. I got the results from that report: no reflux! Really, though, I could have told them that. Once I took her off of the Zantac, she seemed to improve. I think that medicine upset her stomach.

The radiologist doing the GI yesterday was the one who was so rude during her intestinal ultrasound. He walked in, not remembering our last encounter, and asked
She's 10 months? I told him yes. She has Trisomy 18? he asked incredulously. I again said yes. She has a cleft palate? No. What are her signs? I don't think this guy believed me. I told him how she has clenched fists, maybe rocker bottom feet. Then the nurse pulled off Lily's socks and they all said no. She has one kidney and a VSD, but the cardiologist believes it's closing on her own. Huh he said. It was so great! My heart pumped a YES! for Lily!

I love it that this doctor could not believe what he was seeing! Especially after he had been so rude before, expecting Lily to have everything wrong with her. Instead, he saw this beautiful little girl who has defied so many people's expectations and who has left the medical community saying
Huh. Score one for Lily Grace!

Monday, March 1, 2010

Still sick

It's been a week and Lily is still sick. I'm taking her back to the doctor again today. (I took her on Monday and Wednesday.) Each time, the doctor has heard nothing in her chest and said the retraction was caused by her stuffy nose. She's coughing up gunk at times--is that a good thing?--and she has a rash on her neck, so I think another appointment is in line. We go in about an hour.

I'm nervous. I read about a ten month old little girl with Trisomy 18 who was sick for three weeks and had to be admitted into the hospital for pneumonia. Sadly, she passed away. Even though I know how vulnerable Lily is, I sometimes feel like she's invincible. She's two months away from being a year old, and that just seems so. . .well, old. . .when you look at the statistics. I mean, she's almost there. So I let my guard down. And then she gets sick, and I give her medicine and suck out her nose and lay low with the therapy and think she'll be well in a few days. And a week passes. And then I begin to worry.

I guess, really, Lily will always be vulnerable. I probably should be more careful, taking her places and letting people hold her and washing hands a little more often. I admit, I get careless. It's not that I'm lacking care, it's just that, yes, sometimes, sometimes, I feel like she's invincible. And through it all, Lily is getting to experience life and love and sometimes, sickness. I always hope and pray that my motherly intuition will kick in and I'll know before her sickness gets the best of her when to take her to the doctor. I look for retraction and blue lips throughout the day. And I'm holding on to my belief that germs help us build stronger antibodies. I just hope the same holds true for my little Trisomy 18 girl.