Happy Lily

Lily's happy for two reasons: a good cardiologist appointment AND it's her 3 month birthday!

The appointment

I'm very happy to report that Lily's cardiologist appointment went very well today! He was purely tickled to tell us that her VSD is, in a sense, closing because a flap of tissue is growing over the hole. Basically speaking, we have nothing to worry about. Doc said that Lily is doing "remarkably well" for a baby with Trisomy 18, and he was proud of her growth. We're ecstatic!

I'll send more details later.

Tales from 2am (Ch. 1)

It's 2 o'clock. I'm in the living room, in the dark, feeding Lily. I'm sitting in the chair, head leaning back, eyes closed. I hear it, the grunt and then the sound that resembles someone forcefully squeezing ketchup out of a squirt bottle. My eyes open. Ugh. Maybe it's a false alarm. I close my eyes again. A few seconds pass. There it is again. I'm definitely changing a diaper tonight. I begin to worry after I hear it the third time. By the time the fifth one gets around, I'm thinking I bet I have poop all over me. I feel around Lily's diaper area. Nothing. I've said before that I don't believe in luck, but this moment might have just changed that notion. Twelve minutes have passed and I'm thinking that it's time to burp Lily. Wait a minuteHow am I going to do that? I mean, moving Lily from a lying down position to a burping position usually requires a hand under the diaper area. Do I really want to do that? I'm faced with a burning conflict. If I don't burp Lily, this could mean disaster in another sense. Which to do? Burp or diaper? I lift Lily to my shoulder, give her three quick taps. No burp? Time for a diaper change. I lay her on the blanket we left on the floor, propping her head on her little pillow. Please, no reflux, too.
I'm expecting blowout, so I check around Liy's body to see if it's all over her. Nothing. Wow! I unzip the sleeper she's in to find what I'm dreading--blowout. Fortunately, it didn't bleed through her sleeper. Gerber got it right. Huggies did not. Honestly, I've seen plenty of blowouts, but I've never seen one to get underneath the diaper tabs until this moment. I'm staring at the mess. Poop has leaked everywhere, and I'm trying to decide how I'm going to clean this up. I'm faced with a task that the world's best tactician couldn't handle. This requires strategy. At least I don't have to pull this outfit over her head. I try to maneuver Lily and her sleeper and the diaper while also trying to keep it contained on her small blanket. You see, we just got new carpet installed for whoever buys our house. Please let all bodily functions stay where they belong.
My use of wipes blows Dave's two-wipes-per-diaper change calculation. I use two on Lily's hands, five on her back, and seven on her behind. According to his calculation, I've just changed 6 1/2 diapers. Looking at what's in the diaper and what was on Lily, it should have been 6 1/2 diapers. But she's now clean. I put a onesie on her, go back to the chair, and get back down to business.

It's two thirty am. I'm in the living room, in the dark, feeding Lily. I'm sitting in the chair, head leaning back, eyes closed. I hear it. . .

Ah, the joys of motherhood.

Colic?

So we decided not to take Lily to the clinic on Saturday or Sunday. Lily's doctor wasn't there, and I'm just not ready to risk someone who might not be familiar with T-18 to assess her. I think my biggest fear with that is the "incompatible with life" attitude I'm afraid I'll get.

But after at least an hour's worth of crying each night for the past week, I had to do something, so I took Lily to the doctor today. He thinks it is colic. Apparently, colic comes on at night, and it could last anywhere from 1 to 6 hours. Gulp. Just to make sure it's not reflux, he suggested giving a tsp of Maalox before her episodic feeding. Problem is, we don't know when the episode will occur. Sometimes it has come at her 9/10 feeding; sometimes, the 2 am feeding.

Lily is now at 7 pounds, 9 ounces. At three months, she weighs exactly what Gabriel weighed when he was born. I told the doctor that she should be gaining weight. She eats all the time--every three hours. He reminded me that her stomach is small and only capable of holding two to three ounces at a time. I guess that means that she'll be eating every three hours for a while. Guess I better get used to feeding every three hours. Another gulp.

Lily has her next cardiologist appointment on Thursday. This is the appointment where we hope to find out whether or not the hole in her heart is closing. This is big, so if you don't mind praying, we'll gladly take those prayers!

It's big for a few reasons. The obvious--Lily's life. The not-so-obvious--it will play a big part in determining whether or not I go back to work. We've got a lot of decisions to make within the next week or so, so if you don't mind more praying, we'll gladly take prayers that help us make the right decisions for Lily's care. (Dave just told me that I'm asking a lot of my readers--two prayers in one post. :) I know I am, but you've been a great network of supporters, and I truly appreciate all of your support. It's nice knowing that you're out there.

Frustrations

In the past week, it seems that Lily has developed some reflux issues. I've been putting off a doctor's appointment, thinking that it's the tomatoes I've eaten so it'll clear up, (and I actually thought it had cleared up last night, which it did not) so I'm miserable.

She's been experiencing these episodes at the night feeding, around 9 or 10. After she eats, she'll contort her little body and stiffen up, and you can just see the yuckiness all over her face. She looks as if she's tasted the worst food possible. I know it hurts her, and since I have no medicine to give her, there's nothing I can do. Trust me, I've tried everything.

I've fed her with her sitting up. I've burped her with her sitting up so as not to put pressure on her abdomen. I've stopped eating tomatoes. I've tried to massage her and help her relax. She won't take a pacifier, which the speech pathologist says to use. She says saliva helps neutralize stomach acid. What else have I tried?

Well, I could probably remember if I weren't so tired. Last night, we thought we were in the clear. Lily's 9/10 o'clock feeding came with no episode. I should have listened to myself and gone to bed when I put her down. Why do I have to be so stubborn? At 12, she woke up wanting to eat. I fed her the way I usually do and then waited a few minutes (probably not long enough, but hey, my eyes were so tired they were sticking to the back of my eyelids) and put her back in her bed. Then I heard it. Those sounds she makes when she's uncomfortable and trying to make it go away. I got her out of bed and the fun began. I was up with her until almost 2 when Dave took over. I have no idea how long he was up with her.

Our doctor has a Saturday clinic that he runs with a few other doctors, and I'm hoping he'll be there today. I trust our doctor. He's had a patient with T-18 before, and he's been wonderful with Lily. I'm just waiting until 10 to see if they're open.

And all of this wouldn't be so bad, but I'm not getting enough sleep. I laugh when I say that we've created a monster when we started nursing. Lily now won't take a bottle! (Let's hope I don't have to go back to work!) So Dave can't even get up with her in the middle of the night and feed her.

I feel bad for Lily. I know this hurts her, and I hate that she's going through this. OK. It's 10 and the clinic still isn't open. More frustrations!

Pictures

Lily loves taking a shower!

Looking up at Mommy. She was so precious last night! Is that a smile trying to come out?

Sometimes, she finds her fingers.

A lesson on opposites--little/big
around 7 pounds/around 25 pounds

Lily makes great eye contact!

By the way, Lily is now at the twelve week mark!

The road not taken

Not too long ago, my daughter, Rani, talked on Facebook or in her blog, about Robert Frost's poem "The Road Not Taken." If memory serves me well, she wasn't too fond of that road because she felt it was a lonely road, and quite frankly, she'd rather have her friends along for the ride. I've been thinking about that road and about her comment an awful lot lately, and I hate to say it, but I think she's missing out on something by not taking that road.
To refresh your memory, here's the poem (taken from http://www.wsu.edu:8080/~wldciv/world_civ_reader/world_civ_reader_2/frost_road.html):

Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth.

Then took the other, as just as fair,
And having perhaps the better claim,
Because it was grassy and wanted wear;
Though as for that the passing there
Had worn them really about the same.

And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back.

I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I--
I took the one less traveled by,
And that has made all the difference.

I can see how one could easily think that going down a road not taken could be a very lonely experience, but I don't think that's Frost's point. Besides, I've grown more as a person in my solitude (not loneliness) anyway. The way I see it, he's telling us that he's taking the more difficult road, the one less traveled, and that has made all the difference in his life.

That's what Dave and I did in choosing to let Lily live. It's not so much that we did something many people don't do--I know many others have chosen to continue their pregnancy after hearing devastating news about their unborn child. But it has not been easy. Now, taking care of Lily isn't that much different than taking care of a healthy newborn, especially now that her tube is out. The biggest difference is in the visits from hospice (which she is now off) and her speech language pathologist, early interventionist, and physical therapist. Plus, she's had more doctor's appointments. What's difficult is living day to day not knowing what the next day is going to bring, worrying about her cries and her color and whether or not she's aspirating. Wondering if we will will get to find out if her hair will still be black once it grows out or if it will be curly like it seems to be growing. Things like that weigh on you. They're pretty heavy and I walk through life a whole lot differently than I used to, carrying that weight.

But oh, the difference! Lily has been a joy and a blessing. We have truly learned how to be grateful for the small moments. We have been given a miracle. Yet I still find myself taking advantage of what we've been given, especially when she seems to be doing so well.

While this has been difficult, I could not choose the other path, the easier one. Dave and I know that the easiest way isn't always the right way, and we feel this also applied to Lily. We went into this knowing that it wouldn't be easy.

But look at the road not taken in the poem. It hasn't been taken! Just think, the traveler has the opportunity to take that path and become a pioneer! That traveler is the one who gets to "pave the way" for others to follow. I'm not saying that Dave and I are the first to take this road. But I remember Dave telling me when we first found out about Lily that he read countless stories of people who had terminated their pregnancies and those who chose to continue their pregnancies. He said the ones who terminated always felt regret, but those who continued (regardless of the outcome) felt so blessed and would not do it any differently. What if our story helps someone make a decision? There are other stories out there that have that power. Or what if our story answers a parent's question about her child's care? We have gone to so many other blogs to get answers about Lily's care. Then we have made a difference for someone else.

So it's not a lonely road. We have made friends along the way. We have been given the strength to make it through because of prayers that have been lifted up for us. We have been comforted in knowing that so many people are taking the time to pray for our family and that they truly wish the best for Lily. Don't be afraid of that road not taken, my child. Oh, the difference!

(Another note: please pray for my best friend, Yvonne. She passed out the other day and fell and broke her jaw in 3 places. She finally got to come home from the hospital, but her jaw is wired shut and she's in a lot of pain.)

LG is puttin' on the pounds!

Look at that belly!

Don't let the pictures fool you, though. She's still tiny. These are newborn bloomers. Way too big!

At the last weigh-in, Lily weighed 7.6 pounds. Mind you, that's on our scale, but it can't be that off, I would think. Lily likes to eat! She eats every three hours for the most part. But at night, she'll go a few hours over that. Not many, though. Last night was brutal. She was up at 12:30, then 1:30. She stayed up until 2:30. Back up at 4:15. I don't usually wake Dave up, but last night was an exception. I had no choice; I could barely hold my head up. It's all my fault. I really should go to bed earlier.

Grayson T.

I have been following this one blog for the past few weeks--http://kinseygracethompson.blogspot.com. Kristi and her husband are two amazing people. You see, they lost their first little girl, Kinsey, at birth. Kristi became pregnant again, only to find out that their son, Grayson, has Trisomy 18. He was born on July 7 and spent five days with Kristi and her husband. They collected monkeys for his daily birthdays and made cute little signs for him. Life is so precious, and I am touched by this family's celebrating of life. I have no words for this family right now. Only a heart that hurts and prays for peace in knowing that their little man is in good hands. Please take a few minutes and pray for them. And if you get a chance, visit her slideshow of Grayson's birth--http://www.crystalgoss.com/#/graysonthomas/
Try to keep a dry eye as you listen to the song that accompanies the slideshow. I cannot think of a more appropriate song to honor this little boy's birth.

Kristi, if you are reading this, when I saw your slideshow, I was amazed at how radiant and peaceful you look. You seem to carry this motherly strength about you. God was definitely with you and Grayson during his birth. How fortunate Grayson is to have you as his mother.

2 am

It is during the 2 am feeding, or the feeding that is supposed to be at 2 am, when not only am I the most sleepy, but I am also the most peaceful. During this feeding, it's just me and Lily. Nothing else exists to distract me from our routine at this hour. It is quiet enough that I can hear every suck and swallow, indications that Lily is indeed nursing and getting the nourishment that she needs. The bathroom light is on, and it sheds just enough light onto Lily's face where I can make out her features but not so much that it will wake her up. I liken it to a full moon on a dark night.

It is during this feeding that I feel I connect the most with this precious baby. Our braided lives draw tautly at this hour as we sit in the stillness.

It is during this feeding that I pray and thank God for yet another day. I am holding a miracle, and I know it. She radiates this fact. I feel such a privilege to be holding such a child, not just because she is mine and she is here, but because I believe she has been touched by Him who is much greater than myself. I hope anyone who holds this little girl feels that same power.

Sometimes Lily decides she's not going back to sleep, and in the light-dark, I see the shadows of her eyes. They are so big and curious and still have the power to pull me into them.

Believe it or not, as much as I would like to get more sleep, I cherish these early hours. I hold them dearly, knowing (and fearing) that they will not last forever.

2 month checkup

We're back from the doctor's appointment feeling pretty good. Well, Lily's not feeling so hot since she had to get FIVE shots and drink something, but we're feeling pretty good. Lily weighs 6 lbs 6 oz, which makes the doctor happy! According to him, "It looks like Lily's going to be one of those babies who defies the odds." I can't tell you how many times I've run that quote through my head. I want it etched in my memory (I'm not one for memorizing quotes). One of those babies who defies the odds. My little girl. Aside from her crying each morning, reminding me that she's still her, those were the sweetest "words" I've heard in a while. Praise God!