Cali

To put it mildly, Lili had a good time at the Monterey Bay Aquarium. Soooo many fishies!!!

I think she had as much fun with the people as she did watching all the fish! Aunt Kathy, did you see that?!?

Aren't they supposed to be dancing?

Away with the paparazzi! Release the hounds!

Halloween fun!!!

Our little fairy princess loves Halloween! Lili handed out candy, then tried a little, then decided to climb the porch railing. Good times!

Lili eats the camera

Our first crack at posting video, thanks to YouTube. Let us know how it works. I haven't gotten the sound to transfer over yet; check back on that in a few years. I'll try some more clips if this one works out!

Aquarium fun!

Lili had such a great time at the aquarium when she went to visit Noah! She got to pet the starfish and get up close and personal with all the fishies in the wall tanks and - even better - in the floor tanks! Woo hoo!





























































Noah gets stung by the plastic jellyfish...

Thanks to Pam for the above photos!

Back home, Lilienna poses to us all one of life's most pressing and mysterious questions:
"Where is Lili?"

Must...stand...up!!!

Let's begin by noting that Lilienna has blueberry juice on her leg...

She's crawling all over the place, and the general feeling is that it won't be too long before she's running all over the place. Thank you Henry for giving daddy a little practice!

And here we step back in time a few minutes to see just how Lili got blueberries all over her. She has fun when she eats, that's for sure!

Been a while

Lili loves to jump high in the air (with a little help from daddy) and daddy likes a little workout now and then to keep the flab at bay. Everybody wins again!
Sometimes she jumps really high, and then gravity stops working and she checks out the chandelier for a while. She thinks that's hilarious.

Lili also loves her little backpack. She was checking out Gettysburg from the big people's perspective. Very cool.

George!!

Lili couldn't wait to see Curious George at Arts Fest. She didn't tell mommy he was going to be there and talked her into going somehow. I believe she said something like 'aba buhbabbah dada mo ap-puh!' that sealed the deal. And mommy thought she was asking daddy for more apples...Ha! Anyone can see the subliminal message to go to arts fest in there.

Fancy camping

Lili had a great time camping at Shenandoah National Park. She learned that an inflatable mattress closely resembles the big bouncy castle at the carnival she's heard so much about, and thought that most of the time spent on it should include rolling and diving around. She calmed down the second night and really settled into sleeping in the wilderness (if a 200+ site campground really counts as wilderness). The deer wandering around camp made it feel wild, but Lili was right at home.

We thought everyone should experience what we like to call 'squishy face'. Enjoy.

Birthday girl

Lili likes birthdays. Well, she's only had one, but she really likes getting presents and being the center of attention. Oh wait, that happens all the time. Never mind. But she really likes wearing Pooh ears.

She loves her exercises too. Daddy wishes he could have so much fun doing situps.

The finalists in the world raspberry championship duke it out in the final round. Unfortunately for all you left coasters, Aunt Kathy took home the runner-up prize to our Grand Champion of the World.

Lilienna thinks it's very nice to share, until she wants her drumstick back, thank you very much. Gracie looks more interested in the toob thingy anyway...

Finally, Lili enjoys her new lounger. She can now sit and rock away the minutes while mommy and daddy make her a bottle. Ah, the good life...

Thanks to Grandma for almost all of the above photos!

Memorial Day plus

Had to steal one from Grandma's camera; it's just too cute not to. Daddy just told Lili a really funny joke and made her promise not to tell anyone else.

No way, daddy! You can't say that!








Lili got to play in her new pool on Memorial Day. Lucky girl; it was hot hot hot outside. She was cool cool cool in the pool.





















What? I'm playing! Can I help you with something?

Fairfax County nonresidents

Lili, Mommy and Daddy went to Burke Lake Park in northern Virginia over the weekend during their visit with cousin Henry, Aunt Carrie and Uncle Jon. We got snagged at the gate as nonresidents of Fairfax County and hit up for eight bucks. I think the missing hubcap gave us away. It was a very nice park...

Lili was in heaven - trees and kids everywhere. She was hanging out in her carrier soaking it all in.
Daddy's been accused of slacking recently on the blog - many apologies. I had a great excuse all written down, but Jasper ate it.

This is being posted from Aunt Carrie's beautiful new Power Mac G5. Droool... These photos are copyright 2006 Carrie Milton Photography, all rights reserved. I just made all that up, except her business, it's real. Shameless plug. (And she didn't get a chance to edit the pictures, either, I just grabbed them straight off her camera. Coulda made us into a painting or tin relief or something with photoshop, but I'm too lazy.)

-Bonus Easter shot -

Two of every animal

A few shots from Noah's visit with Lili.


How big is Lili? Sooo big!

Jumpin' & drummin'

Lili loves her jumper, and her doctor says it's a good workout for her legs. Everybody wins!

She's had a great few weeks. She recently decided that baby food isn't cool enough for her anymore. She insists on eating small bits of big people food. Her current favorites are gluten-free applesauce pancakes (one of daddy's favorites too), mango, kiwi fruit, avacado, sweet potato and cooked apples. Her bottom left front tooth is oh so close to popping through; we'll take teething over any of the other issues she's had recently.


Lili's taking after daddy with her interest in percussion. She'll whack anything with her drumsticks...anything.

The whole family (minus the kitties and doggie) is taking a Baby Signs class. Lili already had 'milk' and 'all done' down; the class is really more for daddy's sake.

Roller Coaster

Lili's getting over a couple of ear infections and a couple of stomach viruses. The last few weeks have been a little rough. She's feeling good again, making sure that mommy and daddy don't get any sleep to catch up for the last few weeks. Her current favorite is to take a half-hour power nap and then play and smile and roll around as mommy and daddy watch bleary-eyed...
We are thrilled that she's feeling better. Her digestive system is starting to work things out and her doctors say she looks great.
Everybody wish Lilienna a happy nine month 'birthday' tomorrow on St. Patty's Day!

Yay!!!

Well, after a crazy month, Lili is feeling wonderful! She has been sleeping well the last few nights and playing and smiling during the day. She is meeting one therapy goal after another and making us all come up with new goals for her. Hmm...crawl, walk, take over the world!

Here she is sitting up on her own. She can sit up for up to ten minutes by herself now, and catch herself (most of the time) when she leans over.

She's even doing daddy's work for him. The quality has gone way up.

She has a new G-tube called a MIC-key button that sits right up against her skin. We attach a tube to it when she needs it, and can remove it the rest of the time. She's fighting off the last little bit of bronchiolitis, a cold that got into her lungs a little. We're working on getting her a different thickener so her digestive system will have a better shot at working normally. And your tax dollars are hard at work for Lili, as she just got approved for Medicaid. Actually, I think a health savings account would be a much better idea. Then Lili would learn to manage her own health care costs more efficiently. Last 2 sentences: sarcasm.

Hospital pics

Here are some pictures from Lili's stay in the hospital a few weeks ago. Mommy got to hold her the evening after the surgery.

















2 days after, she was reaching for Mommy and getting more alert.



She is doing very well now. We have been battling keeping gas at bay; the g-tube is a big help with that. She is eating very well; we've only used the g-tube a few times to feed her. We've decided to go with feeding her home cooked fruits and stuff (which as you can see by our last post, she loves to eat on her own) and formula, to eliminate the unknown foods that make her uncomfortable. We could run an experiment to figure out what they are, but then she'd be miserable for four months and then go off breast milk anyway.
When the gas or constipation isn't bothering her, she is happier than ever.
All of our initial follow-ups went very well. The incision is healing excellently, and the g-tube site looks fine. It still looks interesting to mommy and daddy, but dozens of doctors and nurses have said it looks good since day 1. The surgeon wants to see her again March 1 to replace the g-tube with a 'MIC-key' button that will be practically flush with her skin. We've also had a nurse come to our house a few times to help us learn all this new stuff.
We'll keep you posted!

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.

Superbaby!

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 and...um...all 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!

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.

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!

Recovery

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.

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.

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!