Sunday, January 29, 2006

Eatin' and drinkin'

Lili is teaching us new tricks every day. Her independent streak is shining through now that she feels better. I can eat on my own, drink on my own, I heard there's an apartment for rent down the street...

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.

Tuesday, January 24, 2006


Lili is progressing very well. She had breastmilk continously overnight through the g-tube, and started eating her thickened breastmilk by mouth this morning. She hesitated for a few minutes, then chugged a whole bottle at 9 am. Now she's almost done a second bottle. She's burping waste removal mechanisms are working well. There is always worry with this surgery that the wrap will be too tight and burping and vomiting becomes impossible, so we are thrilled that she is burping. We haven't noticed any reflux either. Wow. She is smiling a lot and playing and cooing, and just wants to be held, and we're going to disconnect all the tubes and monitors later today and take her too see the fishies down the hall. The doctors and nurses are all thrilled with her progress, and we'll probably go home tomorrow. Woo-hoo!

Monday, January 23, 2006

Two tubes left...

Lilienna is down to two tubes, and one will be gone in an hour. She is 'eating' breast milk through her g-tube and her digestive system is starting to work again. It must suck not eating anything for two days, especially for a hungry baby. She's sleeping right now, after a little fit because her milk was a few degrees too cold. Lili knows what she likes! We'll probably be going home in the next few days, with a fun feeding pump to help along with anything she doesn't take by mouth. Thanks again for all the support, it has helped us all. We'll post some pictures after we get home.

Sunday, January 22, 2006

One tube down

Lili had her annoying n-g tube removed today, to her delight. She's 'eating' pedialyte through her g-tube now, and should be promoted to a more 'advanced' diet tomorrow. She's also due to lose more tubes tomorrow, at least the epidural and bladder catheter (I keep forgetting what they call that one). She slept really well for most of today; now she's a little fussy about her itchy nose and probably p'd off that she's been in the same room for three days. At least we got to hold her for a bit last night and today. That should be much easier after more tubes bite the dust. We'll try to keep you posted!

Saturday, January 21, 2006


Well, here we sit in Danville. For those from the area, you know that means we're a little crazy. Anyhoo, Lili is resting and recovering from her surgery. She had a 360 degree (Nissen) fundoplication, which means they took the top part of her stomach and wrapped and sutured it to her esophagus. She also had a G-tube inserted to help us feed her, if needed, and help vent her stomach as she may otherwise have been pretty bloated for a while. The surgery went very well. She is pretty fussy when she's awake, but sleeping very calmly most of the time. I'd be fussy too. She has five tubes in her right now (G-tube, N-G tube, epidural, bladder catheter and I-V); hopefully that will go down by quite a few over the next few days. Not to mention the pulse oximeter and respiratory probes stuck to her. (Google any of those you haven't heard of). The folks here at Geisinger have been very attentive and are doing a great job helping Lili (and her folks) get comfortable.
Thanks for everyone's thoughts and prayers; they're working! From the site counter, it looks like Lili's a star right now. We love her, and if you're reading this, I bet you do too.

Tuesday, January 17, 2006

the Archie theorem

Lilienna hams it up with her new huge stuffed caterpillar!
Lili is 7 months old today.
She's doing great overall (besides the reflux). She weighed 16 lbs 15 oz at her checkup the other day. She's almost sitting up by herself and trying to turn pages in her books. She is (proven by the Archie theorem and confirmed by double-blind independent testing) the cutest baby ever.

Monday, January 16, 2006

Health update

Hi everybody!
So sorry it's been so long between posts. Lili's a busy girl!
Lili is scheduled to have surgery to help with acid reflux on Friday. All of us (her health care team) are worried about the possibility of her reflux going down the 'wrong tube'. She drinks thickened milk to help her swallow, but you can't thicken reflux.
So, we've tried every other approach: diet, positioning, Mommy's diet, every medicine imaginable, but they don't take care of it.
So... she's going to have a fundoplication, where they take the top part of the stomach (the fundus) and wrap it around the bottom of the esophagus, to form a one way valve. We're very anxious, of course, but hopeful that this will help her in the long run.
Just wanted to give you all an update...more cute photos to come soon!