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.

1 comment:

  1. It's exactly how you describe with Vera as well, the sleep breathing/snoring/snorting. It's probably OSA - Obstructive Sleep Apnea. The other kind - Central Sleep Apnea is what we don't want, that causes them to turn blue. Vera will chokes periodically in her sleep as that's the airway blockage suddenly clearing and the mucus shoots back up the nose. We then have to carry her upright, and let it time to clear back down before putting her down again. ENT doc has told us that elevating the bed a few degrees helps with the drainage, but that tends to cause her to roll off the pillow so we're constantly up at night repositioning her onto the pillow, so her head is always higher. A good latex pillow from BabySafe also helps. Those cotton stuffed ones are not much good for support.