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


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


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.