Wednesday, December 30, 2009

Eight months

Lily had her gall bladder ultrasound today. Actually, I'm not sure why she had it--it seems to be a repeat of the previous abdominal ultrasound. The radiologist came in, and call it ugly, but I think he has been exposed to a little too much radiation. Talk about lack of people skills. It angers me a bit when I come across people like him, and then I realize with pity that it's their loss. I don't think he'd ever understand how absolutely special and precious Lily is, despite her condition. Anyway, he said that he saw sludge, he thinks, in the gall bladder, that only a CT scan would tell us for sure. I asked him what that exactly means, though, that sludge in the gall bladder. With a little attitude, he told me that he didn't know, and then went on to say It is my assumption that given your daughter's Trisomy 18, she has plenty of problems to deal with. I didn't take that very well, but I sat quietly. Later, I thought that I should have pointed out to him that she actually doesn't have as many problems as he probably thinks. His loss. But we're probably looking at a CT scan, which means sedation. I'm just wondering how necessary it will be. I'll ask the doctor once we talk about today's results.

Lily got her H1N1 vaccine today, too. She cried a bit, but it wasn't the open mouth silent catch-your-breath cry I've seen with other vaccines. Tough little girl! And her weight is back up to 10 pounds.

I think we're on to something with feeding. Again, Lily held the bottle in her mouth and may have even sucked on it. This time, we put her vibrating strawberry against the bottle. She took it for a few minutes, but then resisted more. Patience. Patience.

Lily is eight months old today. At three months, she smiled. At eight months, she rolled over from stomach to back. I did have to put her up on her arms, but she's getting the hang of putting her right arm forward instead of down by her side, and twice she rolled over. I was so excited. I picked her up and hugged her, and it was as if she realized what she had done herself. . .or at least that I was so proud of her. It's always so exciting when she makes progress like that.

Sunday, December 27, 2009

A few updates


Lily loves her big brother


Look at those cheeks!


Daddy's little girl

If anyone ever thought that being a stay-at-home mom gave the mother more time, I'm sorry to say, but that person is sadly mistaken. I was sadly mistaken. I thought my house would be cleaner, my posts would be more frequent, I would be more organized. I would get more sleep. I never thought none of the above would be a choice, but with doctor visits and playing and feeding, ha!, where's the time?
I can't remember what I've posted about Lily, so I'll start by saying that she definitely has one kidney. The urinalysis gave good results, but in January, she'll have a VCUG where they'll cath her and put some dye in her to see if the connection between her urethra and bladder is good. If so, we're pretty much free and clear from the nephrologist.
The ultrasound on her abdomen confirmed the kidney, but it also showed something in her gall bladder. The doctor says it's normal to find that something in older children, but it's abnormal to find it in an infant. They were going to do a CT scan on Lily, which meant she was going to have to be sedated. I questioned it and called the cardiologist (the nurse said she should be fine given her heart conditions), but it wasn't something Dave and I were wanting to happen. Well, it just so happens that the doctor's office called back to tell us that the CT scan would not be done. Instead, she would have another ultrasound--this time, focusing on her gall bladder. No sedation required. Could this be a silent prayer answered?
A prayer that we're still saying is regarding Lily's weight and her ability to take a bottle. Once again, Lily's weight was down. She had reached 10' 3", but then went down to 9'11". She went back up to 10', but was down to 9'14" last week. Her doctor doesn't like the fluctuation and talked about how Lily needs to grow, both inside and out. He's wanting me to feed her for 10 minutes each side and then offer her formula. If it were that easy. It's so frustrating because Lily does not like the bottle. She cries and throws her head back and forth and clamps her mouth, and I push and hold and make her cry more because I'm pushing and holding--something I wouldn't be so adamant about in other circumstances--but what else am I to do? We've even tried giving her cereal and fruits and vegetables, and the only positive we've had is that she did give the applesauce a try when Dave put it on his finger, but she still cries and throws her head back and forth.
I had a little luck today when I tried to give Lily a bottle, only because the tv had her attention and she didn't notice the bottle in her mouth. Once she did, though, the tv had no affect on her. And it's kind of funny that the tv helped calm her because just this morning I had told Dave that I believe tv's affect babies brains, maybe rewires them, and what if it "rewired" Lily's brain and was causing the sleep apnea we think has just started.
And that's another thing. The sleep apnea. Lily's a loud sleeper. But in the past day or two, we've heard her sleeping, and then nothing. And then a cry or a snort, like she's trying to catch her breath. She does have a little stopped up nose, so maybe that's the culprit, but we're definitely keeping an eye (or ear) on her.
I wish she were a happier baby, but she definitely has her precious moments. Last night, I was rocking her and singing to her, and she just looked up at me with her big blue eyes and kept moving her mouth as if to try and mimic me. It was such a beautiful moment.

Wednesday, December 9, 2009

Suffering

Dave and I have said that we hope to be in tune to what Lily has to teach us, and while it's hard to learn anything when you're in desperate need of sleep, I think Lily, in her sweet innocence, has given me the answer to one of the biggest theological questions out there: Why do bad things happen to good people? Or Why do good people suffer?

Last night, Lily cried. And cried. And cried. I think she finally fell asleep at 6:30 this morning. I got maybe 1 hour of sleep in. It was the worst night yet. None of the tricks I've gathered up my sleeve worked (well, the ten minute bath at 5:30 this morning did calm her down). And while it was probably the cream-based soup I had for dinner the night before and for lunch that day, plus a few sips of a milkshake, I can't help but worry about her. Her weight is down, and we go tomorrow to see if it's increased. The nagging question is Why?

I was lying on the couch this afternoon, trying to get a small nap in, and thinking about how much I appreciated the nights when she would wake every three hours to eat. Then I remembered how much I complained when Lily woke to eat every three hours. But you see, had I not experienced the crying-until-6:30-in-the-morning, had I not suffered, I would have never appreciated what I did have. . .even if it wasn't the best possible situation.

And I'll admit it. Until Lily, I didn't have this profoundly deep appreciation for the life we birth in our children. It was there, no doubt, but I think I took it for granted. Maybe I expected it.

I pray that there are many more lessons I can learn from this little peapod of a girl. There are some times when I am so afraid of losing her, but I try to swallow that fear and appreciate and treasure each and every moment I have with her. The suffering urges me to do that.

Thursday, December 3, 2009

Concerns

Lily had to get her Synergis (RSV) shot yesterday. Talk about an expensive shot! Just one dose is almost $2000. She gets one monthly for the RSV season. I'm glad she's getting it. Gabriel had RSV two years ago--he was three months old--and we were giving him breathing treatments every two hours. Luckily, if you can call it that, we were on Christmas break. Unfortunately, we had to miss going to my Aunt Trisha's house on Christmas Eve. Didn't want to infect the other babies there.
I'm disheartened by this appointment. Lily has lost a little weight. She was at 10'2" previously, but yesterday, she was at 9'12". I'm not pleased with that weight loss, nor was I wanting to hear that if she doesn't gain back that she'll either have to have supplement with a bottle (wouldn't be so bad if Lily would take a bottle) or a tube. We're trying fruits and veggies, but Lily isn't really interested. I wonder if it's taste or texture, but she does not like things in her mouth. All she will tolerate is vibrating toys, so the speech therapist is going to try a vibrating spoon next week and see if she'll accept food that way.
Lily's weight loss concerned me in a different way. Prior to last night, for two nights in a row, I had fed her (in bed), and when I went to move her, her head was soaked with sweat. The cardiologist warned us about profuse sweating during feeding and weight loss and heart failure. Those words hauntingly echoed throughout the day. The one hope I had was that Lily was hot in her thick pajamas, sandwiched between our body heat with the blankets on top. I put her in a lighter material last night, and I'm pleased to announce that there was no sweating! I hope that rules out heart issues. She's been doing so well, not needing medicine, that we had dismissed problems in that area and focused more on keeping her well.
Speaking of keeping her well. . .I'm terrified of this H1N1. Fortunately, I was able to get a vaccine the other day. One of my biggest fears was getting swine flu and not being able to feed Lily. What would we do?! Now I'm waiting to get Lily and Gabriel vaccinated. I had read somewhere that it's pretty deadly to children with brain issues. That, besides a weaker immune system, puts Lily at risk. Gabriel's past RSV, I believe, puts him at risk. So we're trying to be diligent with washing hands and staying healthy. In the meantime, we wait.

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




Friday, October 30, 2009

Hydrochloric Acid

Thanks to Connie, Mallorie's mommy, we discovered that sure enough, Lily does have reflux. The doctor prescribed Zantac, and Lily got better. A little. It seems to work very well for her during the day, but come night, and she's struggling a little. I can hear it as she lies in her crib--something comes up, and she swallows it down. Her discomfort unsettled me, so I called the doctor and told him that something wasn't right. Others had suggested Prevacid, and said it worked wonders, so I hoped that maybe a prescription change would make things better. Instead, the doctor upped her dosage a tenth of a milliliter. I can't say I saw a huge difference, but I figured it would take a little time.
Apparently, this stomach acid is some pretty heavy duty stuff. The other morning, I forgot to give Lily her Zantac. When Kristen, the speech therapist, was here, Lily threw up a dab. It got on her lavender pair of pants, and I'm not kidding you, changed the color of the pants in the area where it landed from lavender to pink. I thought that maybe it was just discoloration because it was a liquid, but some breast milk got on her and didn't have that effect. The poor little girl. I can only imagine the pain she's been going through. Luckily, she had an appointment to get an RSV vaccination, so I brought up the issue of the reflux and told the doctor what had happened with the spit up. This time, the doctor prescribed Prevacid to go along with the Zantac. We'll begin that today. I'm hoping that we'll have 100% relief. I hate to think of Lily in that much pain.
But speaking of her doctor's appointment, Lily is a whopping 9 pounds, something ounces (6, 7, 8, or 9--I can't remember). She's growing so big and getting to be so playful. She'll almost laugh when we tickle her, and today she began following the fish that spin above her in her swing. I don't look at Lily's developments as I did with Rani, Autumn, and Gabriel. With them, there was this expectation that they would smile or laugh or sit up or walk by a certain age. I know with Lily's condition comes developmental delays. That's reality. But in my heart, I believe, given her own sweet time, she will do these things. She may not do them when "healthy" babies do. That's ok. That also makes it that much sweeter when she does accomplish something. Seeing her follow those fish today warmed my heart. She accomplished something today.


If you look closely in the middle of the pants, you can see what the spit up did. I took this picture about 10 hours after the fact, so it had dried.

Lily's so happy because she loves that her mommy is now staying at home with her.


Lily looks so chunky in this picture. Look at those arms!


I love her quirky little smile in this picture.

Tuesday, October 27, 2009

Invitation

Lily Grace Is 6 Months!

Come drop in

Saturday, October 31, 2009,

from 12 - 3

for cake and ice cream

and to help us celebrate

Lily's first six months!

Email for directions.

May your presence be our presents!

If you can't make it, would you instead please offer up a quick "thank you" to God for our little miracle some time during our drop in time?

Saturday, October 17, 2009

More decisions

I am about to make the hardest decision of my life. Anna, our babysitter, gave us her two-week notice on Wednesday. She has found a job where she will work in the career she went to school for. Although we are happy for her, we are sad to be losing her. She's taken great care of our little ones. For us, she's dealt with pinkeye, fevers, breathing treatments, crying, more crying, and even more crying. I know there are people out there who will do just as good of a job as Anna has done, but the emotional turmoil finding another babysitter will put me through is not something I look forward to. Unfortunately, I have trust issues.
Dave and I have been thinking that maybe I should just stay home with the kids. It's too much stress dealing with feeding Lily every three or so hours. The other night, she was crying, and I was just so exhausted that I couldn't even tend to her. She had already eaten, but I know she was still wanting to eat, but I just didn't have it in me to give her that comfort. I'm so fortunate that even though Dave works, he's still willing to get up with her when she cries, which he did when I was unable. If only she would take a bottle!
There is a fear there, actually. I'm so afraid that I'm pushing myself too hard. That there's only so much I can take until I shut down. I don't want to get to that point. That pushes me to stay home.
I know staying at home will have it's own stresses. Financially, I'm worried. We've gone through our budget, and well, we're just going to have to cut back. We have student loans we can "turn off" if we need to, but we've been working so hard to be debt free (check out this website if you have the same desire http://www.bankrate.com/calculators/managing-debt/debt-pay-down-calculator.aspx). As worried as I am, I like the challenge. We're just going to have to be a little more creative. And, please, if you have any creative suggestions--cheap meals, cheap dates, cheap ANYTHING--please share!
Luckily, we have no problems communicating, and we both know the challenges we're up against. I'm hoping that awareness will keep a lot of the stress off of us.
I haven't take the leap yet, but I think it's the right thing to do. And as I've come to find out, the right decision isn't always the easiest.

Sunday, October 4, 2009

I love the weekends!

During the week, life is not easy. A typical day at work for the past three weeks involved waking up at 6am, getting ready in barely enough time before feeding Lily, going to work where I'm doing the work of three people (and slowly becoming more cynical towards the education system). I come home, exhausted, wanting to take a nap so badly, but I can't sleep with Gabriel running around the house. Besides, it's then time for Lily to eat and to have fun with her smiley self after feeding her. A little cooking, straightening up, and other household duties call, and by the time Gabriel is in bed, I'm ready to hit the sack, but my stubborn self doesn't usually go to sleep then. Instead, I'm trying to get a little quiet time. But something happens at night where cute little Lily just doesn't want to be so cute anymore. The scenario usually involves an hour and a half to two of crying before she'll finally go to sleep with either Dave taking her outside so I can get some sleep or me walking around the living room or the bedroom (Dave's a pretty heavy sleeper) trying to get Lily to calm down and go to sleep. The other night, she woke up at 11 (I had gone to bed at 10:30) and cried until 1:30. I fed her until 2, which is when Gabriel woke up. He kept crying every time I left his room, so I opted to lie down on the recliner in his room, where I dozed off and on until 4 in the morning. At 4, I went back to my room, thinking at least I have two more hours. As soon as my head hit the pillow, Lily woke up. It took at least 45 minutes to feed her and change her diaper. One hour and fifteen minutes. Something there is that does not love to let Jill sleep. That was the worst night of them all, but the better nights aren't that much better. Lily is now on reflux medicine, and that is helping, but something is going on anywhere from 10 until 4 that could at any time explode within this child. Do any of you think it could be her recognizing nighttime and wanting to eat more so she can get a better night's sleep--better than the usual 3 to 4 hours? I mean, after she's cried like that and I feed her on schedule, she seems ravenous. Maybe crying like that makes her extremely hungry.

Whatever it is, though, has got to give. I feel so volatile. I try to avoid confrontations at work so I don't lose it. Oh, don't worry, I have the patience of a saint with Lily, but while I'm holding her trying to calm her down, I'm mad at anybody I can blame anything on. Good thing I get it out of my system by morning.

And this is why I did not post anything on Wednesday when it was Lily's 5 month birthday. I was just too dang tired. But here she is, 5 months old and cute as can be. My, how blessed we are, despite the rough nights and the exhausting days. She smiles, and it makes up for it all. I was giddy this afternoon because she and I had such fun playing together. I was trying to sit her up on the couch and take a picture of her, but she kept toppling over. Every time she fell over, she smiled a big smile. I think she might have been doing that on purpose! And I'm posting the picture that proves it! We all just seem to be more relaxed on the weekends.

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.

Chillin'

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 http://briannagiveshope.blogspot.com). A lot for my T-18 mommy friends. A lot.
Thank you for your prayers for Lily and our family.

Saturday, August 29, 2009

Update

LG has another cold. She had one about two weeks ago along with Gabriel. Gabriel got over his a good day or two faster than Lily. I wonder if that's because he's older or if this is what we're going to see thanks to T-18. Now she's sick again. She's run a fever with this one, but the doctor says it's just a cold. So we're suctioning her nose, running the humidifier, and keeping her elevated in hopes that this won't go down into her lungs.

We kept both Lily and Gabriel out of daycare because of this, but with two older sisters in school and two educators for parents, germs are everywhere. Would it be rude of me to tell my little students not to hug me? Just kidding. But I won't hesitate if I hear sniffles.

So every once in a while, I read where a T-18 mom gets frustrated with stupid things people say. I have to admit that I've heard more than my share of she's so tiny and was she premature? that I just about want to be VERY up front and honest with the people who make those comments. I mean, really, this might be the best way to increase awareness. I say this because the other day, I was confronted with one of those she-needs-to-put-her-foot-in-her-mouth situations. Now before I tell this story, do know that I laughed about it to myself and to Rani. But there was a small part of me that was horrified. Here's what happened.

Rani and I were in her school's bookstore. The woman behind the counter, first, called me grandma when I was holding Lily. Grandma!?!?! I quickly let her know that I was the mother. Now, this was a total shock because we usually get asked if we're sisters. (I guess it's not uncommon to see young women like Rani with children at this school.) The lady kept talking and cooing and asking about Lily. How old is she? Almost 4 months. What's her name? Lily. I had a dog named Lily once. She died in my arms. If only, IF ONLY, this woman had known what her comment meant to me. But she didn't know, and that's what I have to keep reminding myself of when I come across people who say things that they don't realize has a way of. . .um, hurting. . .sometimes. When I left the bookstore, I laughed. I'd like to say that I laughed because I have a wonderful sense of humor and I can easily brush things off my shoulder, but maybe this time I laughed to keep some of the fear that so easily wants to grip my heart and rip it to shreds from creeping in.

Saturday, August 22, 2009

Lily's Song--"Consider Lily"

I think there were some people who were unable to hear Lily's song, so I created a slideshow with the song embedded. If you happen to know how I can put this over to the side where I originally had it, please let me know. I've been working on this for 30 minutes. There has to be an easier way. Anyway, the song is called "Consider Lily," and it was written by Michael Ray and Ilhwa Gallo of Eleventh Hour. I hope you enjoy!


Thursday, August 20, 2009

Back at work

I have decided to go back to work. It has not been an easy decision, and I'm still not 100% sure that it's been the right decision, but for the most part, I'm at peace with it.
Call me crazy, but we hired a young girl who has no nursing or education experience. Actually, she's doing a great job, and I commend her for being willing to take this position. She's watching both Lily and Gabriel, and that takes a lot of energy. Good thing she's young! But even more so, I commend her because she was willing to take this position knowing Lily's condition. Dave and I were very honest with her from the beginning. We told her of Lily's fragility and even warned her that even though Lily is doing very well right now, that may not always be the case.
I think we've made the right decision for a number of reasons. (1) This keeps Gabriel out of daycare and away from the germ-fest going on there. Besides the fact that he goes to church nursery, this should help keep A LOT of germs at bay. (2) Feeding Lily every three hours (remember, she won't take a bottle) is exhausting. I've been given permission to come home and feed her, so I'm very fortunate to have such an understanding boss. But there's more. I'll probably regret this feeling later, but I was beginning to feel as if I was dragging a ball and chain. Sure, I still feed her every three hours, but I get that break from the kids by being at work. Sadly, it's work that gives me that break. (3) Autumn is a senior this year. By not working, our budget would be VERY tight. I don't think it would be fair to her to keep certain senior privileges away from her. She's a good kid, and I think she'd be a good sport about it, but none of this is her fault, and I'd like for this year to be special for her. (4) Dave and I have a great relationship, but even great relationships can be stretch, especially when stress over money looms over you. I'd like to avoid that at all costs!
There are a few reasons I think I'm making the wrong decisions. (1) The obvious. I want to spend as much time with Lily as possible. (And I think she wants to spend as much time with me. She's definitely a mommy's girl right now.) (2) We've got the extra stress of trying to sell our house. It's especially hard when I've been at work all day long and I get a text asking if they can show the house at 4:30. Rushing home to straighten things for a showing is worse than doing "The Saw" in Pilates! (I hate "The Saw" in Pilates!) (3) When I'm doing something, I like to finish my task before I stop what I'm doing. I can't necessarily do that. Every three hours, I'm having to stop what I'm doing so I can feed Lily. I guess that would happen even if I were at home, but the beginning of the school year brings me a lot of work, and this year, there are lots of interruptions.
But I come home, and I'm so glad to see both Lily and Gabriel. I've missed them throughout the day, and it's such a fresh feeling, one that I don't really get when I've been at home all day long. They know I love them, and that gives me a lot of comfort.

Thursday, August 13, 2009

Lily's Song "Consider Lily"

As I said in yesterday's post, Dave and I have some truly amazing friends. Where do I start? Dave's best friend is Mike, but we'll get to him in a minute. Mike's mom's name is Lorraine. I think I've known Lorraine about as long as I've known Mike, and I'm so thankful that she, too, has become my friend. We call her Momma Ray. She's the one who led our Prayer in the Park gathering before Lily was born, and if you look back to that time, you'll see that she's also the one who wrote the beautiful prayer for Lily. She's been amazingly instrumental in getting others to pray for Lily and our family.

Rewind to a month or so ago. Momma Ray visited us and brought Lily a gift but told us that she had another gift for her. It just wasn't ready.

Fast forward to last Friday. It was one of those days when frustration dominated every nerve ending. I couldn't help worrying over going back to work or not and how we were going to make either one happen. Too many things just kept going the way I didn't want them to go. I was at the point where I had to make a phone call about relief for child care (having someone watch Lily and Gabriel here at home is going to cost us a little more than what it would cost to put THREE children in daycare), and I just kept thinking if this woman answers the phone, I'm going to bust out crying. She didn't answer the phone. Still, it was one of those days.

When I went out to the mailbox, there it was--the package that Momma Ray had told me she was sending. How can I convey the perfect timing of this manila envelope? In it was a folder with a piece of paper and a cd. Here's what was written on the piece of paper:

"Consider Lily"
commissioned by Lorraine to honor the life of
Lily Grace
written and performed by Michael Ray and Ilhwa Gallo
Inspired by Matthew 6:28-29
"Consider the lilies of the field, how they grow; they toil not, neither do they spin; And yet I say to you, That even Solomon in all his glory was not arrayed like one of these."

Following that was the lyrics. I put the cd in and heard what you will hear if you click on the little arrow in the black box to the right of this page and cried. This was a much-needed blessing to such a frustration of a day. Perfect timing.

When I called Momma Ray to thank her, I found out that this has been in the making since before Lily was born. You see, she read the blog where I struggled with creating memories of Lily and decided to commission this song. How thoughtful! I told you I had great friends!

To add to that, I have to tell you about Mike. When I called him to thank him, he told me that this is mine and Dave's song, we can do whatever we want with it. Wow! I asked him if he minded if I put it on my blog, and of course, he said no, but that this copy was only a rough draft. [By the way, his band's name is Eleventh Hour and they're coming out with a cd soon!] What was mind boggling to me was that he then said That's funny. I was going to ask you if you minded if we played it when we performed. What! To this day, I still can't imagine why he would even ask me that. Such humility in giving such a gift. [And I hear that the song will probably be on their second cd!]

But I've been thinking about this song. I keep going back to the line Consider this lily of the field. How many times have I, in my prayers, taken this child and lifted her up to God and basically asked him to consider her, this lily? God, I'm just putting her in Your hands. Consider her. Please.

So now, I extend this gift to you. If you are a mother of a child with T-18 or some other fragile condition, if you are praying to see your little one, even if for just a little while, please, use this song as your prayer for your own lily of the field.

Wednesday, August 12, 2009

It's been a while

I know it's been a while since I've posted, but I've started back at work and life is quite hectic right now. Our house is still on the market, and we run around like chickens with their heads cut off to get the house ready for a showing. Why is it that Lily gets hungry every time I'm in the middle of cleaning? Our camera batteries have died and there's no telling where the good lithium batteries Dave's mom gave us might be, thanks to storage, so there aren't any pictures or video of Lily to share. (I know, I could go get more batteries, but I never think about it.) But the biggie is that I'm just too tired most of the time. Lily is still eating every three hours, including at night, so I'm getting very little sleep. Couple that with waking up early for work, and you have a barely-functioning mommy. Ah, the joys. . .
But there are joys! I look at Lily and just shake my head at this little girl. It seems that everything the medical community says she's going to do or not going to do encourages her to do just the opposite. That's my rebellious little girl--taking after her mommy.
Lily does not suffer from constipation, she's over three months old, she's smiling, she's rolling over from tummy to back, and I swear if she'd just move her arm out of the way, she'd be able to go from back to tummy. She's growing (surpassing 8 pounds now) and nursing and amazing people everyday. And the doctor is not worried about her heart anymore. I'm baffled and don't understand how we could be so fortunate, but I also realize that it's not for us to understand. So, instead, I just lift up a lot of thank you's.
Lily has suffered from a cold already. I think she got it from Gabriel and his constant kisses. She was pretty stuffy, and Dave and I worried over whether to take her to the doctor or not, but I think she's now on the better side of it. She's been a little hoarse, too. Poor thing. But hopefully she'll build up a little resistance to fight off later bugs that may come her way.
I have something to share with you, and I really, REALLY can't wait to share it, but I've got to figure out how. I hope you like it as much as I do. Dave and I truly have some amazing and talented and giving friends.
Good night.

Thursday, July 30, 2009

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.

Monday, July 27, 2009

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.

Saturday, July 25, 2009

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!

Friday, July 24, 2009

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!

Sunday, July 19, 2009

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.)

Tuesday, July 14, 2009

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.

Monday, July 13, 2009

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.

Sunday, July 5, 2009

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.

Wednesday, July 1, 2009

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!

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!