Tuesday, June 30, 2009

2 months!

Today, Lily is 2 months old! I cannot believe it! Two months! The other day, I was looking online for information about weight gain, and I kept coming across statistics regarding life expectancy. Everything I came across stopped at 6 weeks. According to those statistics, Lily's life was not supposed to happen this way. I'm glad she doesn't listen to negative statistics.

Eight weeks old, bottle fed, nursing (full time). . .I'm telling you, LG has this knack for amazing me!

Tomorrow is another doctor's appointment. I believe she gets her shots. Ouch! I've always hated when my children have to get shots. I'm anxious to find out what she weighs and what the doctor thinks about her nursing. Plus, there's the VSD. It would be so nice if he didn't hear the murmur.

Thank you for continuing to prayer for my family. We are deeply touched by your love and dedication.

Monday, June 29, 2009

Fortune Cookie

On Sunday, a guy named Trey from church gave me a wonderful gift--the fortune from one of his fortune cookies. He was at a local Chinese restaurant on his son's birthday--April 26, 2009--when he received this fortune.

You will soon witness a miracle.

Lily was born on April 30.

Instead of putting it with Lily's keepsakes, I put it in my Bible. It just seemed appropriate.
This little slip of paper is not only (playfully) a fortune, a predictor of the future. This little slip of paper highlights our fortune. Now, I am not a believer in luck. I believe , however, in blessings, and I believe that smart choices and hard work help good things happen, but not always so. With that being said, our little Lily is our fortune. She is our blessing. And whether or not you put any faith into fortune cookies, this one most certainly came true, and it was enough to cause hope in the heart of the man who received it.

Friday, June 26, 2009

Incredible

The first definition from Merriam-Webster's entry of incredible is "too extraordinary and improbable to be believed." The second is "amazing, extraordinary." I have something incredible to share with you. I'll let you determine exactly which definition you'd like to apply to what I'm about to share with you.

Lily nursed tonight.

Good night.

Thursday, June 25, 2009

8 weeks and as stubborn as ever


Boy, does she have a temper!

If she had puckered her lips, you would have seen her monkey face

8 weeks old


My heart jumps for joy when I think: Lily is 8 weeks old today. I just cannot believe it. When I say she is as stubborn as ever, I mean it. It seems as if this little girl has it in her mind to defy anything the medical community says.

Last Monday, she went for the Modified Barium Swallow Study. They told us that she would probably be constipated.
Oh, no! we thought. She was already experiencing a little of that. We were afraid it would only get worse. Needless to say, it only got better. Instead of pooping every three or four days, the little stinker did nothing but go twice each day. Actually, today, she's gone three times!

Tell her she can't do it, and she'll prove you wrong!

Tuesday, June 23, 2009

Little Oliver

I am so sad to say that little Oliver was born into Heaven on Sunday. Lo siento. This is never easy to hear. His mother, Shannon, is an incredible woman. She emailed me (and a few other mommies) to tell us what had happened. She also shared with us that she had a "beautiful peace" about her during the delivery. Thank you for taking the time to pray for her and her family. I know it brought much comfort to her. Thank you for sending your prayers out for people you don't even know. It just means so much to us.

Friday, June 19, 2009

Taking advantage of naptime

Where's the time to blog these days? I wish there was just a little more of it to at least post how Lily's doctor's appointment went. I can't say it went all that badly. He wasn't very impressed with her weight gain--she's now up to 5 pounds 14 ounces--, but he was very impressed with how much she was moving. I'm not sure he's fond of us bottle feeding her, but he didn't suggest against it. There was a little scare. After the appointment, Dave said that he checked on his paper "Failure to thrive." With the weight issue, I took that to mean that she was not doing well, but after speaking to the hospice nurse, I felt better. She said that when a baby doesn't have a "normal" weight gain, it's considered failure to thrive. That has nothing to do with life expectancy necessarily. Whew!

But considering weight. And normal. What is normal anyway? I read somewhere (although I can't find it now) that the average weight gain for a baby with T-18 is 2 ounces per week. If that's the case, Lily is right on par. She's gained exactly two ounces each week. According to her condition, I don't consider that failing to thrive.

Luckily, we didn't have to go for the sweat test after all. The doctor's office called and said that the second PKU screening came back fine so that wasn't necessary. Still, could Dave or I be a carrier for cystic fibrosis? We're considering genetic testing in the event we decide to have another child. I guess that would show up then.

Things are pretty stressful around here these days. Lily is eating roughly ever 3 hours now. It takes about an hour to feed her (that includes pumping, feeding, and sitting up for about 20 minutes after feeding), so I feel as if I now have a two hour break. We're looking at buying another house, so getting this house prepared for selling feels like a nightmare. I'm running on very little sleep because I don't have much discipline when it comes to going to bed early. We've either had a doctor's appointment or someone over to discuss Lily and her condition every day this week. Good thing we had a relaxing vacation last week. I'm thinking maybe we need another one! But things seem to be going well, so I really shouldn't be complaining. I'm trying very hard to keep a positive perspective.

Oh, and please pray for my friend Shannon. She goes in on Sunday to begin preparing her for Baby Oliver's arrival. Oliver also has T-18, and there's an issue with his cord. Also, Oliver has hypoplastic left heart syndrome. Shannon has emailed me and said that she's having a peace beyond understanding. I'm so glad in these final moments that she's able to enjoy Oliver and his kicking. Thank you for taking the time to pray for her!

Monday, June 15, 2009

Encouraging news

Lily had a modified barium swallow study today to see if she aspirates while drinking her bottle. Nothing much to post about that except to say that it went very well and the speech pathologist encouraged us to continue feeding her with the bottle. Lily is drinking the proper way, and there was one episode of "penetration" of the milk, but it didn't go down into the lungs. Still, we are to watch Lily while she eats to make sure nothing gets down into her lungs, for there is danger of pneumonia if it does. (And I'm happy to say that Lily has increased her intake to 70 ml, but we think she wants more!) Amazing!

We have a doctor's appointment tomorrow, basically to check for weight, but I'm sure he'll listen to her heart, too. Then, on Wednesday, Lily goes for a sweat test to check for cystic fibrosis. I'm not sure of the details, but apparently, either Dave or I is a carrier of that gene. We're hoping for the best because that would be quite a blow--as if having T-18 isn't enough for her to deal with.

Sunday, June 14, 2009

We're back!


Look! We're in two places at once!


Could Lily be the youngest to walk the Appalachian Trail?


Sunbathing, but not for long. . .


She's in there somewhere.


Lily's first hike up a mountain


Lily's first train ride.


She's a natural outdoorsman. . .er, woman. . .er, baby.


Gabriel, Lily, and Mommy

So I know that Lily won't remember any of this, but we had a blast and a nice relaxing week. Honestly, I almost cried the day we walked a (small) part of the Appalachian Trail. It was my first time on it, even though I've wanted to hike it for some time. It just did my heart good to know that Lily was able to have this experience at such an early age, and that we aren't going to let her T-18 stop us from giving her even more experiences like this. It did all of us good. The Smoky Mountains are beautiful and refreshing, and I wish we could get away more often and spend our weekends surrounded by the greenery and all that Mother Nature offers us. The mountains always have this way of altering my perspective and scaling me down a bit. I actually think I could live there. If you've never been there, I highly recommend it!

Friday, June 12, 2009

Our little traveler

Lily has been on vacation! She's been hiking in the Smoky Mountains where she saw a bear and rode a choo-choo train with Gabriel and her mommy. She wanted to ride the go-carts with her daddy, but she wasn't quite tall enough. Tonight, she gets to go to the Dixie Stampede and hopefully will see some horses. She's spent a good bit of time relaxing in the room, but it's been nice spending time with Grandma and the aunts, uncles, and cousins. And she's been doing all of this without feeding tube!

We've been giving Lily a bottle here and there and supplementing with the tube anything that she wouldn't take on her own. Before we left, she had taken 3, maybe 4, full bottles. Here, she took all but one full bottle, and the one bottle she didn't fully take had maybe 20 ml left, so she had that through her tube. That was Tuesday night. Early Wednesday morning when I was feeding her, I smelled a weird smell. I couldn't figure out what it was. I was smelling her, her blanket. . .even myself. :) When I put her in bed with me, trying to calm her and get her back to sleep, I noticed that it was the tube that smelled. I could not imagine letting ANY more liquid go through that tube, as bad as it smelled, so Dave pulled the tube out, and Lily has gone without tube since then. She's such a champ! The other morning, she ate at one, but didn't wake up until 8:30. . . and I had to wake her up. It was nice to get some extra sleep, but I have to admit that I woke up afraid to check on her. But she was there and I said a quick "thank you" to God.

The feeding issue isn't resolved. Lily goes on Monday to have a modified barium swallow study done to see if she's aspirating. We feed her without tube, so I'm hoping that she's not aspirating now while she eats. Sometimes she does choke a little. I hope that's not what's happening. But the speech pathologist says that even if she's aspirating, she can still learn to take milk from a bottle. That tube is such a nuisance, so I hope we don't have to put it back in. But as much of a nuisance that it is, if it is the way we have to feed her, so be it.

Friday, June 5, 2009

Lo siento

The Spanish phrase for I'm sorry is Lo siento. Literally translated, lo siento means I feel it. I think about that phrase a lot. In English, it seems as if we say I'm sorry with quite a few different meanings. Sometimes, I've just given a quick sorry. I've said it after making mistakes and as a form of sympathy. But these meanings never produced the same emotional apology within me.

Today, I think lo siento is more appropriate. Laurie's little Toot was born into heaven on June 2. I left a comment for her and told her that I was sorry and that my heart breaks for her. My words betrayed me. I feel so much more. I feel confusion. Why Toot? Why not Lily? I feel punched. I know what I would want to do--just lie down in bed, balled up, not willing to do anything. Numb. I know how a part of me would be missing, just like she described. I feel the days and weeks and months of grieving and the grey that clouds a heart. I feel the deep sighs and the chokes and the how am I going to get over this saddness. I feel her loss.


Though I've not lost a child, I imagined it so many times before Lily was born. I have felt it threaten each time Lily has had an apnea spell. Like I said, it is so much more appropriate, this time, to say to Laurie, "Lo siento."

Thursday, June 4, 2009

TKO

Apparently, Lily thinks she's a boxer with her mittens on. . .

video


Speaking of the mittens, our hospice nurse, whose name is also Lily, suggested ribbon to keep the mittens on. Here's what we rigged up. . .

Tuesday, June 2, 2009

Our little trooper

Just a quick note to share that just now Lily finished almost 60 ml of her BOTTLE. Not the pump. Her bottle. How much does Lily usually take? 60 ml!!!! No pump or syringe before going to bed tonight! Way to go Lily!

(I told you she amazes me every day!)