Sunday, January 29, 2006

Settling back in

My apologies for not updating sooner. We've all been home since Wednesday night; it's been a whirlwind since then. Lili is sleeping right now; she is doing better every day. We have a feeding pump we can use at night to feed her anything she didn't get during the day; tonight she won't need it. She ate plenty by bottle and a little extra by spoon today. I'll post some cute pictures when I find the download cable for the camera...
She already seems happier to me than she was before the surgery. She'll have her fights with an air bubble getting stuck, but the rest of the time she is smiling and playing. She is such a little trooper. She would be constantly battling the reflux before, and still was a happy baby. Now she seems freer to enjoy things; she's not being constantly distracted by stomach acid. I hope daddy's reading her right.
The incision is healing beautifully. Babies are incredible healers. When we left the hospital, a nurse said the wound looked like it had been two weeks since the surgery. All the nurses were sad to see her go.
Her first few days home were filled with learning new equipment and new techniques to keep her comfortable. She had some rough bouts with gas bubbles, but that has been getting better every day. The doctors said that is expected from the medications, and it gets better after a week or so. Check.
Did I mention we haven't noticed any symptoms of reflux?
We are settling back in to a house better than we left it. Lili's grandpa 'Oscar' went to town on a bunch of projects that mommy and daddy had been ignoring recently for some reason. To name a few, we now have excellent hot water pressure, a kitchen much closer to completion than a week ago, and Lili's new crib (her Christmas present from the number one fan of her blog) was all assembled and waiting for her return home. And grammie has been helping mommy and daddy get a little sleep, as will grandma marian tomorrow.
Many people told us this would be harder on us than on Lili, and I think they're right. We may feel like we got run over by a couple of cars, but we're so happy that Lilienna is doing so well.

Here's Appendix A: Way too much information on her health, etc.:
Lili is having the expected battle (she is currently winning) with air building up in her belly; thank goodness for the g-tube which can vent the air. We have discovered, thanks to Lili's occupational therapist, a bottle (that we had sitting around) that has cut down on her unwanted air intake by huge amounts. They call it an infant feeder; it's meant for cereals and baby food, but her milk is thickened so much that it works perfectly. The bottom is a disk that slides up as she drinks her milk.
She was also having trouble with constipation, another old problem made worse by the anesthesia she was on. We cannot say enough about how much acupuncture has helped with that. They use tiny little needles, maybe an eighth of an inch long, held on by what looks like a tiny band-aid. We discovered it a few weeks ago in our last ditch effort to avoid surgery. It helped immensely with the constipation, but didn't touch the reflux. The acupuncturist never said it would help the reflux, but we all hoped calming her digestion would help the reflux in turn. I am convinced that her speedy recovery is being helped along quite a bit by how in balance her body was right before the surgery. She had been having bm's on her own for over a week, something that hadn't happened in many months. She has now been going on her own since we left the acupuncture center on Friday. Quick tirade: if acupuncture can work as well as it has for Lili, insurance companies could save ridiculous amounts of money by covering it, avoiding some of the pricey medications people get stuck on. Tirade over. I'm being as scientific on that soap box as I was for Lili's title of 'cutest baby ever'. I really know very little about acupuncture, but it will be on my list of things to try next time I am ill. The doctors have been surprised by how well it has worked for her too. It is interesting how something that has been around for thousands of years is now known of by so few. OK, seriously now, I'm down, off the soap box.
I'm going to sleep now.

1 comment:

Grandma Marian said...

Hi Lili! I saw you Sunday and Monday and you were so happy and skillful almost all of that time - and then you did have one of your gas bubble ordeals for about half an hour. Such a long half hour! But mercifully over, and then you were serene and went right to sleep. I'm only just now looking at my computer for the first time since Saturday!

I DID get to see your acupuncture entry (as it were) at YOUR house on YOUR computer. You type very well! I hope our friend Dr. Martha enjoys that entry! She does lots of acupuncture along with "traditional American" medicine (not sure whether that's a technical term, hmmm).

Keep on being well, Lili! It is such fun to see you sitting up! and doing stuff with your hands and fingers. I love watching you examine your fingers. Such beautifully made craftsmanship, and you're right to admire - AND you're learning what they're for!

Be very well - Love, Grandma Marian