Monday, November 30, 2009

Happy Seven Months, Lily!

This time last year, I was reeling from finding out that the baby I was pregnant with had this condition, Trisomy 18. If memory serves me correctly, the final amnio results were in on the day before Thanksgiving. This time last year, despite that devastating news, I had so much to be thankful for.
It's twelve months later, and I find it remarkable--the heart's ability to heal. I still remember the afternoons spent lying on the bed, unmoving. The tears. The prayers to God, Please let me miscarry. A broken heart.
And today, Lily is seven months old. What a difficult seven months it has been. What a wonderful seven months it has been.
We found out last week that Lily only has one kidney, not a pelvic kidney as was first thought. We also found out that her gall bladder is showing something that the doctors aren't sure what it is. Stones? Sludge? In a child, it's not uncommon. In an infant Lily's age, it is. She's going to see a nephrologist this week and if the nephrologist wants a CT scan on her kidney, she'll also have one on her gall bladder at the same time. Otherwise, everything looks fine. Thank you, God.
Today, Lily had an eye doctor appointment. The doctor made a comment that Lily's eyes are the best eyes she's ever seen on her Trisomy patients. I don't know exactly what that means, but it sounded great! Lily is far-sighted, but that might correct itself within the next six to twelve months. Lily does have small nerves, the doctor said, but she has patients who deal with that. Her concern is the way Lily's brain receives her eyes' information. Lily perceives contrasts. She will stare intently into your eyes. She will "track" you if you move from side to side, but she has no interest in toys. The only toy she will "track" is the fish in her swing.
Sleep is another issue. The child has her days and nights mixed up or something. She's so calm and wants to sleep during the day. Come night, though, and she's fussy. She falls asleep around 9:30 or so, but as soon as our heads hit the pillow, she's awake. . .and there she stays. We've put a radio in our room, and I think that little bit of noise helps, and we're now sleeping with the bathroom light on (Boo! I like to sleep in pitch black!). Believe it or not, that seems to help as well. Plus, 9 times out of 10, when I put her in her bed, she wakes up. It's like she does not like her crib. Last week, she wouldn't go to bed until 3 in the morning. Now, I do not like that I do this, but I'm in survival mode due to lack of sleep, so I have been letting Lily sleep in our bed.
But what I've noticed is that when I feed her in the rocking chair, and she falls asleep, when I get up, she stiffens, and then has trouble going back to sleep. If it's the 2:30/3:00 feeding, she's awake until 5 or 6. We went out of town this weekend, and Lily started out in the Pack N Play, but when I fed her in bed, it was too uncomfortable to sit up, so I fed her lying down. She stayed relaxed and slept pretty well. At least she didn't stay awake for two and a half to three hours. So here's our new plan, and last night it worked pretty well. When Lily falls asleep after 9:30, we put her in OUR bed. She stays asleep. The radio and bathroom light are on. When she wakes up in the middle of the night, I feed her in bed, lying down. I change her diaper if needed and pick her up to pat her back for a few minutes to calm her. She's pretty good at going back to sleep.
Here's what I don't understand. How can she go back to sleep, lying flat on the bed after eating. What about the reflux? I'm wondering if staying relaxed helps that because it's when she wakes and stiffens that the problems seem to occur.
I say all of this knowing how unpredictable and ever changing life is with Lily. It seems as if every time we think we have her figured out, she goes and changes the rules. But that's been her way from the beginning. Stubborn? Yes. It drives me crazy some times, but perhaps that stubbornness is what has kept her with us. I would have it no other way.
I have learned to appreciate even these difficult times. I've complained about Lily waking to eat every three hours. Then, I experience half of a week where she doesn't sleep until 3 in the morning. Last night, she woke every four hours to eat, and I was in Heaven! I was so appreciative of not having to stay awake until 3 am that I'd take every four hours and not complain.
I have learned that this is the most difficult time I've ever experienced. When was the last time I said that? This puts that time to shame. How much I've grown to appreciate the "easier" times.
I have learned more about generosity. . . and that it doesn't necessarily come in the form of money. As our preacher said, it's like water running through a pipe. There is a receiving end and there's a giving end. There have been so many people reaching out to us, and Dave and I have had to open our receiving end up a little more. (Apparently, we have a secret Santa!) But we've realized that we don't want our giving end closed so that others' generosity overflows. We have also opened our giving end, and funnily so, although we don't have much to offer monetarily, it feels good to give knowing we don't have much to offer.
Tonight, we finalized our Advent calendar. This year, we've created a calendar of things to do with Gabriel and the girls--in service and in fun--each day/night of the month of December. Activities range from making Christmas cookies and watching Christmas movies to making pine cone bird feeders and serving dinner to homeless people. I'm so excited about this Christmas season! Our activities begin tomorrow night with Rani, Autumn, and me watching The Nightmare Before Christmas--one of Autumn's favorite movies. (Dave has to work late.)
So much to be thankful for!

Monday, November 16, 2009

Bits and pieces

It's hard to believe that November is halfway gone. Lily's six month birthday celebration was over two weeks ago, and we're still celebrating in our hearts around here. She goes to the doctor today, but she was weighed on Friday, and she's almost 10 pounds. My heart leaps for joy when I think about it. I never imagined having her with us for six months, let alone having her weight escalate into the double digits. It's so exciting!
Staying at home with her and Gabriel has been wonderful! I wish I could say that it's been easy. Lily is still not taking a bottle and still not letting me get the rest I so desperately need, but I am happy to report that last night she ate around 8:30 and didn't wake up until around 2. I'm still not smart enough to go to bed when she does, though. Instead, I stayed awake until around 11:30 to help Autumn with scholarship paperwork. As our little sleep sprites would have it, I woke up around 12:30 to Gabriel crying because the smoke detector in his room was making the dead battery noise. I probably got back into bed around 1. Lily woke up at 2 and didn't go back to sleep until after 4. I finally swaddled her and put her in her crib and just said "You're on your own," and crawled back into bed and listened to her root around for who knows how long. This is the third night within the past week where we've had to deal with Lily not wanting to sleep at that 2/3 o'clock feeding. I'm definitely trying to keep her awake today!
Yesterday was an adventure. Gabriel can now show his battle wounds. He fell out of a wheelbarrow at my mom's house and hit his head. He now has six stitches right above his hair line. He's such a brute! He cried when it happened but was such the trooper in the emergency room, saying "ouch" and "that hurt" only twice. No more tears. He woke up this morning, raring to go!
More about the birthday celebration. . .we had about 20 guests drop by throughout the day. It was a fun time, and I'm so thrilled that there are so many people out there celebrating with us. Thank you for coming or for stopping and saying a prayer for our family. And thank you to the person who left the surprise for us in the closet. Autumn found it the next morning. As you probably already know, you didn't have to do that, but Dave and I appreciate your generosity.
Thanksgiving is almost here, and there is so much to be thankful for. We don't have much materialistically, and my staying home will mean even less, but gosh, in other ways, we have so much more than that. Crazy as it may sound, it's all I need.

Lily on the day of her six month celebration