Sunday, May 31, 2009

Amazed

I've contemplated sharing this incident that happened the other night--there's an intimacy about it that made me wonder if I should share, but it was also an absolutely beautiful moment that I can't help but sharing.

Lily is spoiled, I'll not lie. We gladly spoil her. Couple that with the fact that I'm exhausted, and you have a baby who cries in the night and gets put in the bed with mommy and daddy. I just turn the bathroom light on and position her in the crook of my arm so she can look at the light. She's held (just like she wants to be) and occupied (just like I want her to be) and I sleep (just like I want to do).

Early the other morning (Lily was in the bed with us), I awoke to her grunting. I moved her so that she was about a foot away from me, and I turned myself on my side so that I was facing her, but there was enough space in between us. Like I said, about a foot. I stayed awake because she kept grunting. After a while, she had nuzzled her sweet little self right up against me. Her little head kept moving back and forth. She nuzzed some more. Now, I did not have a shirt on, and before long, she had latched on to me (all by herself!) and laid perfectly still and fell asleep.

I tell you this because Lily's never expressed interest in nursing. Every ounce of breast milk that she's gotten has been pumped into a bottle and is either taken that way or put into the bag to be pumped into her. It amazes me that this little one month old was able to move herself and find me. It amazes me that she latched on. It amazes me that I was able to comfort her directly in that way. I'm telling you, this little girl amazes me every day. It was such a beautiful moment.

Thursday, May 28, 2009

The cardiologist appointment

I don't know how to begin telling about today's cardiologist appointment other than to say that Lily does have a VSD. As I said earlier, this is basically a hole in the heart that allows blood from one chamber to enter into another chamber that it's not supposed to enter. I guess in "normal" children who have one, this hole closes by itself. In children with T-18, it doesn't and causes congestive heart failure. As scary as this sounds, the doctor has given us hope.

The cardiologist puts VSDs into one of three categories: big, moderate, and little. Lily's is big, but it acts moderate. It acts moderate for two reasons: first, it is quite high up in the chamber wall; second, tissue has already begun to form (he believes it began in utero), and he believes it has the potential to continue "growing" to close the hole.

Once again, we find ourselves not knowing--the main characteristic of the pregnancy. Boy does this little girl have something to teach us! As always, we are listening to her. We have chosen comfort care for Lily. That means we won't pursue aggressive measures to treat this VSD if it does not close on its own. Our cardiologist advocates the same measures. It was all I could do not to cry when he told us how once, when he was younger, he made a family's life miserable because he choose aggressive means for their child. There was so much regret in his voice, and to think that this man carried that burden on his shoulders was heartbreaking. As cruel as some of you may think this choice sounds, I once again feel that we were led to this doctor. We had changed our appointment from yesterday, and that meant we were to see a different doctor, the one we saw today. It was so comforting to hear him say that Lily's VSD could be a blessing from God due to the tissue and its position.

So it's very possible that new meaning has been added to my definition of "miracle." I'm constantly looking!

Wednesday, May 27, 2009

Prayer requests

If I may ask for a few prayer requests. . .

*Lily's cardiologist appointment is tomorrow. Unless it is just a consultation, which I'm not really sure of, we should find out if anything is wrong with Lily's heart. If nothing is wrong, the doctor says we could find ourselves with 10 to 12 years with Lily.

*There's a girl I've been emailing back and forth for a while. Laurie is her name. Laurie is pregnant with a little girl who has Trisomy 18. This is her first child. If Little Toot doesn't get here by next week, the doctors will induce on June 2. Toot has a VSD (hole in her heart) and cysts on her brain. I know the emotional turmoil that I went through before Lily was born. I hate to think what all Laurie is going through, and my heart breaks for her.

*Another girl I've emailed back and forth, Shannon, is pregnant with a little boy, Oliver, who has Trisomy 18. She's due in June. She, too, is a first-time mother.

*Annabel Grace is having surgery on her bowel on June 4. I swear, this little girl's smile melts my heart!

I ask for these prayer requests because I know I have some wonderful people out there who are fabulous "prayer warriors." Just knowing that they were praying and cheering for Lily gave me so much comfort. May those on this prayer list be comforted in knowing that even more people are praying for them.

Tuesday, May 26, 2009

My little kitten has lost her mitten

Lily without her mitten

Lily without her feeding tube

The mitten is an important accessory in little Lily's wardrobe. You see, Lily has this tendency to hook her pointer finger around her feeding tube, right at the nose, and pull the tube out. (She has successfully pulled her tube out twice--once, last night.) The tube, for now, is part of Lily's being, so the mitten helps keep that tube in. Somehow, though, Lily loses her mitten every now and then. No big deal, unless the tube happens to come out.

Like I said, Lily pulled her tube out last night. Dave and I have been trying to bottle feed Lily, and we've been pretty successful. She's taken 10 ml here and 15 there. I think she had even taken 20 or so at one feeding. When the tube came out, we decided to try leaving it out, thinking Lily's hunger would take over and encourage her to suck more. The opposite happened. Baby's burn a lot of calories eating and they lose a lot of energy. Even though we only left the tube out for about 12 hours, we could see a difference in her energy level. We didn't like that, so Dave put the tube back in, which is a traumatic experience--for Lily and for me.

I really wish we could have left the tube out. It irritates Lily (and me--I keep catching it on something), plus, it's no fun to watch her suffer when it gets put back in. Tearing the tape off of her face leaves her face red and irritated and is painful. And the process of tube feeding is tedious:
1) pump for ten minutes
2) put pumped milk into a wasteful 1000 ml bag (Lily takes 60 ml, but we put 80 ml in the bag to make sure we have enough. The smallest bag they have is 500 ml.)
3) prime any water left from cleaning through the feeding pump tube so that only milk is in it
4) get air bubbles out of the tube. Pump is now ready for feeding
But we have to prepare Lily. . .
5) take a syringe and insert it into her tube. Pull out until there's resistance (we don't always do this step because there's resistance at the beginning, so it's a wasteful step.)
6) take syringe out. Pull out about two ml of air
7) put syringe back in. Get stethoscope and put it on Lily's belly. Push 2 ml of air into Lily's belly. We're listening for a swish or a plop to confirm placement of the tube. I guess if we don't hear that sound, we'd have to reposition the tube. (I hope that NEVER happens.)
8) pull same amount of air back out with syringe
9) put pump tube into Lily's tube. Turn pump on to begin feeding
10) clean syringe with hot water
I have to admit that feeding is pretty simple. Lily is supposed to lay on her right side at a slight angle. Sometimes we prop her on a pillow. Sometimes we hold her. When we can't hold her, it's pretty convenient. Still, I hate the tube!
Once feeding is done. . .
11) clean out wasteful bag with hot water (a tankless hot water heater would save A LOT of water since we seem to have to wait forever for the tap water to get hot)
12) let gravity do its job and run the water in the bag through the tube (gravity does not always do its job and that frustrates me beyond belief because I have to finagle the bag and tube to make the water pass through)
13) hang the bag back up on the pole
OK. I'm sorry to have bored you with the details, but I just wanted to share with you what feeding Lily is like. It doesn't take as long as it seems, but the details (and I get too bogged down with the details) make it seem so tedious. Try doing this at 2 AM and then again at 6 AM, and you'll see what I mean.
But like I said, the tube is a part of Lily's being. Now that's we've tried not having it in, I'm not quite so sure she could survive without it right now. But here's a question Dave asked (it's not a pleasant question). What if Lily pulled that tube out for a reason? I don't like thinking about that question. For now, I'll be selfish and not give her credit for being able to think that way.

Friday, May 22, 2009

3 weeks!

I've been horrible at keeping people updated, but honestly, where is the time? I have absolutely none these days. Dave will not be at work this weekend, including Monday, and I'm psyched!

Yesterday marked Lily's 3rd week. . .another reason to be psyched! Here are a few pictures. . .


Proud big brother! This was his first time holding Lily.

I love this dress! Not too many clothes fit her well.

See how she tucks herself into a little ball.

Lily stayed awake for 3 straight hours yesterday and slept during her 2 o'clock feeding last night. I was in heaven!

Monday, May 18, 2009

Today's appointment

I'm sitting here at the computer with my legs criss-cross-applesauce. Lily is lying in my lap. The way she's curled up, she's made herself the size of me, right at my waste. How this little girl of average length can make herself so small astounds me!

What astounds me even more is today's doctor's appointment. Lily is now up to 5 pounds, 4 ounces. (I think it's all in the cheeks!) The doctor still cannot detect anything wrong with her heart, so he's sending us to a cardiologist. That appointment is next Wednesday. According to the doctor, if they don't find anything wrong with Lily's heart, she could be with us for 10 to 12 years. That's what he said!

Now, I know a little differently. I know that heart failure is a major reason babies with Trisomy 18 don't survive, but I also know that pneumonia and other infections can take their lives. (So, if you happen to ask me if you can hold Lily and I whip out a bottle of hand sanitizer, don't be offended. We do carry a can of it around in her diaper bag. You'd think I was quite the germophobe the way I use the stuff.)

So, Lily is not out of the red, but for now, the doctor can't hear anything, and that's enough for me to let out a loud whoosh. I'll take that and every day I can have with her.

Saturday, May 16, 2009

Mnemonic devices

As an educator, I know that one way for students to remember things is to give them mnemonic devices. PEMDAS, Roy G. Biv, Thirty days hath September. I guess there are mnemonic devices out there for helping people associate names with faces, but are there any out there that will store in my memory the little things about Lily that I'm so afraid I'll forget if she happens to leave us? Things that a photograph may or may not pick up.

Lily has her next doctor's appointment tomorrow. I fear this appointment. What if the doctor hears a heart murmur this time, signifying that dreaded VSD (ventricular septal defect)--that needle-point sized hole in the heart that the ultrasound never picked up, the one that eventually causes congestive heart failure, the one that may not show itself until weeks after the baby's birth. The one I'm praying Lily doesn't have. My motherly fear won't let me forget about it.

My heart breaks thinking about it because I can stare at Lily all day long, trying to memorize her, and I'm so afraid that maybe I've not had her long enough to where she'll constantly be ingrained into my mind's eye. It's bad enough if I forget about the little line underneath her bottom lip or the way her second toe is crazily longer than her big one or how her little fingers overlap in that classic Trisomy 18 way. But what if I forget how she looks--her little monkey face when she purses her lips, her leave-me-alone face, how she curls up when we lay her on her back and she rolls over to her side? Things I don't want to forget about.

In essence, I'm terrified for tomorrow, and even though I'm hoping for the best, I'm preparing myself for the worst. I hate that I'm even thinking in that way--it's making me sick thinking about it in that way--but I tried the whole pregnancy to prepare myself for every possible situation. I guess I'm still up to my old tricks.

Wednesday, May 13, 2009

Bright eyes

Sometimes I forget that Lily has Trisomy 18. It's moments like these that cause that to happen.

video

Tuesday, May 12, 2009

Little Miss Priss

Finally! Time to sit down and update everyone! Lily is still with us and doing fine. Yesterday, the hospice nurse came in. Lily's heartrate was 180. It's been 160, so I was a little concerned, but as concerned as I was, I just couldn't ask her what that actually meant. I wasn't prepared to hear bad news (if there was bad news to give).
I worried about Lily all day long yesterday. Not so much because of the heartrate but because she slept ALL day. I was so afraid that it was her little body giving up. Not so! Little Miss Priss piped up as soon as her daddy came home. I think she just missed him because she stayed awake for a good couple of hours. I was hoping that would be enough for her to also sleep during the night, but no, she was awake during her 2:00 feeding and stayed awake past 3:00. I think she just wanted to be held, so I put her in bed with me and let her look at the bathroom light. We both got our cake--she was held and I slept.
She slept this morning but woke up when I had to wash her off because she threw up a little and it ran down her neck. Luckily, this hasn't been much of a problem. I'd say she stayed awake for a good two hours (while Gabriel napped--wouldn't you know it would happen that way), and she was so wide-eyed and squirmy. A little fussy, but SO DARNED CUTE! Of course, when feeding time came and I got up from my oogling and partial nap, she fell asleep. Is this the beginnings of the momma curse? :)
I say it all in jest because I am still so thankful that yet another day has come and Lily is still here! I'll take the cries, the sleepless nights (are those cries actually louder at night?), the throw up, the dirty diapers--ALL!
I try not to let fear creep in, but sometimes it does. The longer she's with us, the harder it's going to be to let go. I know that, but I'm still trying to keep the perspective of gratitude for each day that we've got with her. Like I said in an earlier post--more than I bargained for.

Sunday, May 10, 2009

NILMDTS

If you have a baby with Trisomy 18 (or any other condition that renders him "incompatible with life") then you probably know that NILMDTS is an organization of photographers who volunteer to photograph babies with conditions like Lily's. The acronym stands for Now I Lay Me Down to Sleep.
Let me tell you about Lily's photographer. She is a breath of fresh air and knows the true meaning of sacrifice. My family is honored that she was our photographer. You see, I called Lee Ann because the first person I was referred to wasn't very cooperative. She talked as if the organization only took pictures of babies that had already passed away (what?!). She couldn't handle coming in during the birth, and she would try to get there on the day that Lily was born (she has three kids, you know), but if not, if I would schedule an appointment for a week out (another what?!), she would be willing to come in.
Not Lee Ann! Lee Ann was even willing to do a maternity shoot ("There's a special bond during a pregnancy that needs to be captured"), but she was in the middle of moving and had to be out of her house on Thursday (I called her on Tuesday). The maternity shoot was not as important to me as getting Lily photographed while she was alive, which Lee Ann was totally willing to do.
I hated that I was pulling Lee Ann away from her move, but she would have it no other way. To make the request even worse, she lives a good 45 minutes to an hour away from the hospital, yet she was still more than willing to come and take pictures of Lily for us. And remember, this is a volunteer effort. Like I said, true sacrifice.
God has blessed us in so many ways around Lily's birth; this is yet another one. I am indebted to Lee Ann for her service. She is truly a remarkable woman.

Thursday, May 7, 2009

Happy 1st Week

10:56 am. Seven days we have had with Lily. Like Dave said last night, "Seven days more than we deserve." I couldn't agree more. We don't deserve this little girl who has surpassed so many odds, yet we have been blessed beyond measure with her presence.
She's so strong. Much stronger than I'll ever be. She tolerates the tube in her nose. She rebels against every cell that carries that extra chromosome. She breathes life into her being and into ours. She has the power to bring people to their knees, and she has powered an army of "prayer warriors." No, I don't deserve her, but I'm honored to be her mother.
Happy 1st week, Lily. I pray for thousands more weeks to come.

Tuesday, May 5, 2009

Birth songs

I didn't know until today when I was looking back at the video of Lily's birth, but two songs played while Lily was being born. The first, "Yellow," by the band Cold Play. The second, "Careless," by a singer/songwriter named Lanky. I put "Yellow" as the second song on my playlist. I think it was a very appropriate song.
What's really cool is this other day, I was listening to one of the cd's we burned. "Yellow" came on, and I just had to stop and take it in. It was like something in me knew that this song was the precursor to my daughter's birth. Here are the lyrics. . .

Look at the stars,
Look how they shine for you,
And everything you do,
Yeah they were all yellow,

I came along
I wrote a song for you
And all the things you do
And it was called yellow

So then I took my turn
Oh all the things I've done
And it was all yellow

Your skin
Oh yeah your skin and bones
Turn into something beautiful
D'you know you know I love you so
You know I love you so

I swam across
I jumped across for you
Oh all the things you do
Cause you were all yellow

I drew a line
I drew a line for you
Oh what a thing to do
And it was all yellow

Your skin
Oh yeah your skin and bones
Turn into something beautiful
D'you know for you i bleed myself dry
For you i bleed myself dry

Its true look how they shine for you
look how they shine for you
look how they shine for you
look how they shine for you
look how they shine for you
look how they shine
look at the stars look how they shine for you

Monday, May 4, 2009

More to be thankful for

Every day for the past five days, I have experienced this depth of gratitude that I have never in my life experienced before. There is so much to be thankful for. It's not just that Lily has made it home and has been blessing us with her presence. It's so much more than that!

* Our L & D nurse volunteered to be our nurse. She was wonderful and attentive, and she even took time from her off day to come and see how things were going. She highly recommended the epidural before the pitocin (which I hesitated to take that early).
* The epidural came before the pitocin. I didn't feel an ounce of pain and was able to enjoy the 4 (or less) hours that I was in labor. Stress free! (I think this was helpful to Lily, actually.)
* Lily didn't go through much distress during labor.
* Lily's NICU doctor was not supposed to work on Thursday, but he came in especially for Lily.
* On the day she was born, Lily experienced 3 apnea episodes where she quit breathing and turned blue. We thought we were going to lose her, but she came through! The last episode was right after she was baptized.
* The NICU nurses were all wonderful. They loved on Lily and gave her such special care that I felt entirely at ease with leaving her in the NICU for a few hours on Friday night.
* I can't tell you how many times our doctors prayed with us. That was such a comfort, knowing that they believed that God led them in their work with Lily.
* Lily weighed 5 pounds 1 ounce. She left the hospital at 4 pounds, 12 ounces. Today, at her first doctor's appointment, she weighed exactly 5 pounds. Next week, we will be changing the amount of milk she gets.
* Lily's doctor is still unable to hear a heart murmer. That's great news, but it can still show it's ugly self in the next few weeks. It's something we don't want the doctor to hear!
* The doctor said that he would like to proceed with Lily as if she's a normal baby. He reminded us that he treated a child with Trisomy 18 who lived to be at least 7. It can happen!
* Our hospice nurse visited us today. She kept commenting on how great Lily looks. (Lily doesn't have the hard markers some babies with T-18 have.) She was impressed with her coloring, her fullness, and the lack of those markers.

There is so much to be thankful for, including all the thoughts and prayers that you have lifted up for Lily. I cannot thank you enough!

Saturday, May 2, 2009

Pictures





Lily

I have had the opportunity to hold the world in my arms four times--August 29, October 19, September 24, and April 30. It never ceases to amaze me that the more I hold, the less time I seem to have, but despite the time that diminishes, my love grows. How is it that the concept of division seems to multiply when we talk about love?

There has been so little time to process much of anything. Yesterday, I didn't have much of a minute to myself; I was so bombarded with hospital staff and visitors and phone calls. I appreciated them all, but it was exhausting, and this introvert needed her me-time.

There are so many things to talk about and so little time. Time. I can't tell you how many times I've looked at the clock and been in awe because each time I look is time that has past--time that God has given me with Lily. And every time I look at that clock, I say a quick prayer for what I've been given. It is 9:35, and I've had 58 hours with her! Fifty-eight hours!

My biggest hope was to just be able to look into her eyes, to interact with her for a few hours, to show her our love. I have been blessed beyond measure with that time with her! My second hope was to not leave the hospital with empty arms. Today at 11:50 am, Lily breathed her first breath of fresh, southern air. I feel as if I got more than I bargained for! And now, at 9:38 pm, I've stopped my thoughts. Instead of looking to the future, I'm happily stuck in the here and now, glancing back at the past three days with a grateful heart.

The world may consider Lily imperfect, but she is perfect for me. She's tiny. She's peaceful. When she's awake, she's alert and has the biggest eyes. She's got a little squeak of a cry, when she cries. She's got the biggest feet I've ever seen on a baby. I think she planned on going skiing as soon as she was born! :) She has a cry that says, "Don't bother me!" and one that says, "I'm hungry!" and one that says, "I'm very irritated!" I'm in awe!

I've got to go take care of some mommy business, but I hope to add a few new pictures later tonight.