Saturday, September 19, 2009

Appreciating the moment

Yesterday, I took Lily to another doctor's appointment. She was so sweet, just lying there. It was a beautiful moment. Her calmness had the capacity to just suck me into it, and I was able to stop and appreciate the moment.
I don't want to mislead anyone. Lily cries a lot, and we're trying to find out why. But this morning, she was not crying, and I was able to listen.
There are times when I hear this voice that says I'm sticking around for a long time. I try to shake my head of that voice, afraid that I'm holding the Bazooka Bubble gum wrapper where the fortune says What you think will happen, won't. But every time I hear that voice, my heart does a flip. It wants to pound out of my chest and for a small, sweet moment, I envision a little girl running and jumping into her mommy's arms. The two turning in circles and laughing. It's like my heart is pumped with endorphins. It's a hope that I know every Trisomy 18 mommy craves. Just as soon as it begins, I force it to end. I am afraid. I fear it all crashing to the ground, so I try to keep my thoughts in the here and now. Lily is with us here, right now! For that, I am thankful.

Wednesday, September 16, 2009

The way God works for me

Work has been extremely stressful lately. They've pulled my assistant to do testing with the students, so that means I'm doing the work of three people--the teacher, my assistant, and me. Add to that having to leave work twice a day to feed Lily and hoping I can get out of there (and back) in time and hoping Lily will eat enough to last her three hours before I can get back home, and you've got one girl who's prayer went like this: God, I'm at the end of my rope here. Please don't ask me to climb it. I just don't think I can do that. Instead, could you just add a little more rope to the end? That's where I am right now. Well, God answered back.
Monday was extremely stressful. When I got home, I realized I had to go back out to get diapers for Lily. She was asleep, so Autumn agreed to watch her and Gabriel. Honestly, it's much easier that way. I made a few phone calls on the way, and was still on the phone while in the store. Picked up the few things I needed and was on my merry way.
When I pulled into the driveway, I looked over at the passenger seat to get the diapers, and lo and behold, I got diapers for Gabriel. (That's what I get for talking on the phone.) I just shook my head and went inside, thinking I'd go back out once Dave got home.
Dave was actually on his way home and he called to see if I needed anything. I told him about the diapers and that I would just go back out later. No need, he said. Apparently, someone from his work had been given diapers for her child, but they were too small. She gave them to Dave for Lily. Size 1. Lily's size.
Now how weird is that?! Very! And in the grand scheme of things, it wasn't much of anything. But to me, it was as if God whispered to me that He's still here. You've got the stress, Jill, I know. Don't forget I'm still here.
Work was a little better on Tuesday and a lot better on Wednesday. I think hearing God's whisper allowed me to shift my focus from the negative I was allowing work to become to something more positive. I love the way He intervenes.

Monday, September 14, 2009

Just a few pics

We went camping this weekend. Had a good time, but I'm glad we're home. Here are a few pictures of our weekend.

Lily chomping on both hands

Lily and I took a nap on the beach. I had to cover her up, not to sheild her from the sun, but because she was cold.


Petey from the Little Rascals? Boy, can our boy get dirty!

So, I would also post a picture of Rani and Autumn, but Rani kept covering her face. I'll take that to mean that she would not want me to post.

Sunday, September 6, 2009

Feeling better

Happy baby!

A little crooked, but still so cute! And feeling much better!

My little flower girl. (Dress courtesy of Momma Ray)

Lily is doing so much better. I thank you all for your prayers. It was either Wednesday or Thursday when Dave and I were afraid we were going to have to take Lily to the emergency room again, but we really didn't want to because of the flu going around our area. I called Molly (Lily's NICU nurse) and she put my heart at ease. I think we gave Lily a breathing treatment and fed her, and it was as if something clicked. Poof! She was all better. No more sucking out her nose. No more worries. We left the humidifier running and still kept her propped up, but more for precaution than anything. I really don't think we had to. It's just amazing to me that one minutes, she's sick and we're worried, and the next, she seems better. I know it takes a few days for the antibiotic to run its course, and maybe that was the time it needed, but I'll just contribute it to prayers. I feel so fortunate to have you all on our side!

In other news, though, my heart is saddened to hear that Brianna received her little angel wings. I keep thinking about her family and what they must be going through. Her mother, Brenda, is so brave, and I admire the way they are celebrating Brianna's life. I remember telling Dave, before Lily was born, that if something happened to Lily, I didn't know if I would be able to go to church right away. Dave wondered why, thinking that it should be the ONE place I would need to be. I can't explain what would be so difficult about going, perhaps the tenderness at a time when I would be hurting so. I say this because that is the one place that Brenda and her family seemed to insist upon being. Front row! I'm in awe and inspired and going back to Dave's words that it should be the ONE place I would need to be. I know this family, too, is thankful for the prayers you lifted up for them.

Wednesday, September 2, 2009

Cold developments

Many days I have chosen to be quiet here in bloggerland because things have been so normal and routine. Lily ate. Lily smiled. Lily pooped. Lily cried for a long time. I'm exhausted. The same, day in and day out. This time, I wish my silence were so easy. This time, I have chosen to be quiet because Lily has been sick and I've been exhausted. We ended up taking Lily to the emergency room early Monday evening. I could give you the short version and tell you that she has pneumonia, but I'm quite confused over how this has happened. (Should I be? Really, I should have seen this coming.)
Dave took Lily to the doctor on Friday. Nothing. Just a cold. But he was told that we need to listen for wheezing. We listened. And listened. All we heard was a little wheezing while she ate, but that sounded more nasaly. The babysitter stayed with Lily on Monday. We told her to listen for wheezing. Again, nothing. When I got home, Lily was asleep in her bouncy chair. Very peaceful. She got fussy at 3:45--time to eat. I fed her, and then sat in the chair, playing with her, making her smile. Something about her breathing didn't seem right. I looked at her chest and noticed that she was sucking in under her lungs--retraction, it's called. (I only knew this wasn't good because when Gabriel had RSV, we were told to watch for that. Thank goodness for that. Otherwise, things could have been worse because still, no wheezing.) So I called the doctor, and he told us to take her to the ER.
I'm really impressed with how quickly they took her back to the pediatric ER. No sooner were we in the room then the respiratory therapist came in, followed by the nurse. About two minutes later, the doctor came in. They tested Lily for RSV--she didn't like the tube in her nose at all--and x-rayed her chest. About two hours later, they told us it was pneumonia. On a scale from one to ten, about a two. Lily was given a shot of antibiotics (one in each leg because her legs are too small to have it given in one leg--little girl!), we were given a prescription for more antibiotics and breathing treatments, and we were on our way home.
I'm so thankful that Lily didn't have to stay in the hospital. I'm so thankful that her pneumonia seemed to be caught early. I'm still scared for her. She's such a little thing and she just seems to be breathing so heavily. I talked to Molly, Lily's NICU nurse, tonight, and she helped put me at ease and let me know that it may be a few more days before Lily gets better. But it's good that Lily's lips are a good color and the horrible coughing sounds are actually good too. It's horrible to think that LG is going through this.
We're exhausted and now it seems Gabriel is wheezing. It seems the night-night gods just don't want me to get any sleep, and it's really getting to me. But Lily is now four months, and she's still with us. Crazily enough, it's worth it.
I'm glad God doesn't have a maximum on prayers, because I've surely said a lot lately. A lot for Lily. A lot for Brianna and her family (see her story at A lot for my T-18 mommy friends. A lot.
Thank you for your prayers for Lily and our family.