Friday, August 26, 2011

I Can't Belive It Got Cold.

Seriously. 90+ degree days, and 60- degree nights. It got cold enough a couple of nights ago to warrant a baby in her first 12 month sleeper. So I just had to post some pictures of it because it is the cutest one evar. <3 JESS

The see me rollin, they hatin'. LOL.

Sucker fish face...she is practicing her suction at every opportunity.

Monday, August 22, 2011

Solid Foods are Good and 11 Months Old!

Well. Sorry it's been a few days. So, where to begin? Well, Kaylee is back on solid foods, and no-no's are officially gone. Tomorrow she turns the big 11 months, and all she wants to do is walk, and walk, and walk, and then walk some more (even though she can't walk on her own yet, she is very, very close). Hopefully, I'll lose a few pounds from her dragging me around the house everyday for a few hours at a time.

My gosh. Soon she will be a year old. I don't know where the time has gone. It seems like just yesterday we were bringing her home, and putting in her NAM everyday and going through lip repair surgery. It is amazingly wonderful and I am so glad that she is developing normally. Anyway, just a quick update today, I have quite a few things that I need to do. <3 JESS

Oh...and pictures! Enjoy!

om nom nom. Chocolate!

What? Mom eats it, and yes I sneezed it!

If I go under the table she won't see that I stole her spoon.

Yum!

ZOMG! Gimme more!

Why is there no more chocolate on this spoon?

Oh! Hi Mom! Your spoon? No, I haven't seen it.

Friday, August 12, 2011

Recovery and Other Stories.

Well, The Kaylee Monster is doing much, much better. She is taking in food, she is playing like nothing ever happened, she adores the kitchen floor and she has decided that she is no longer going to crawl. And I think her favorite song is "Bohemian Rhapsody" by Queen. Three nights in a row she fell asleep to that song. :)

As far as her mouth goes: she doesn't bother with it. I think she realizes that something changed, but she doesn't quite know what it was, so she does not care. We don't even use the No-no's anymore. She is making the best sounds now! She actually has a giggle! Before it was a throaty kind of gurgle, like someone clearing their throat. Now she has this adorable giggle that she never had before. I love it. Making her laugh is our number one goal, just to hear that giggle. :)

 As far as feeding goes: good golly Miss Molly! I had no idea a child could drink so much fluid in one go. Last night around three in the morning she woke up because she was really hungry right, so I woke up and made an eight oz bottle which she drank down no problem. Then she started crying and begging for more. I made six more ounces and she drank all of that too. It is almost like she has decided to make up for the week that she didn't eat hardly anything. Yeah, she is eating well.

She even has gained her sucking reflex already. She tries to suck on her Habermann. It is not made to allow for suction so she gets nothing when she tries, but the reflex is there meaning that her palate muscles are working and that is amazing. I am so happy and proud of her. She has gone through the hardest part so far and handled it like a pro. <3 my daughter so much. :)

Her activity has increased since we got home from the hospital and stopped giving her the baby narcotics they gave us. She loves to pull herself up on anything she can: my jeans, my pajamas, the dog, the chairs, the dog. She loves to pull herself up on all of those things, mostly my legs, but it is awesome. Earlier today I watched her as she went straight into the kitchen and lay down on the kitchen floor. She just lay there, looking around, but didn't try to touch anything or go toward any cabinets. She just lay there. It was cute, she almost fell asleep until Ronan the Destroyer barked and scared her; then she started to cry and needed Mommy cuddles.

She refuses to crawl anywhere anymore. She absolutely has to scoot along the walls and cabinets and shelves and everything else to get places. She even holds onto my pant legs and walks with me slowly across the living room floor to get to the other side. It is amazing. Soon she will just let go of my pant leg and start walking around like a master. Then I have got to get her ready for shoes.

Anyway, that was just a quick update. I have some pictures here for you all. Enjoy the cute that is Kaylee Monster. <3 JESS

Playing with her learning table!

What happens when I do this?

Oooooh! Shiny!


Saturday, August 6, 2011

Ah. Home at Last.

Firstly, we almost had a major emergency before we came home. We had packed up all of our belongings, and got them into one of the carts to wheel out to the car which I had perfectly parked in the best position in front of the doors to the elevator shaft of the parking garage in front of the hospital. We three made our happy way out of the hospital, and to the car. I put Kaylee into her carseat (which I just now remembered: I must adjust straps to accomodate her No-no's), and then looked for Koala.

I looked in the overnight bags, the bathroom bag, the food cooler, husband's bag, my bag. No Koala. I ran all the way back up to the ninth floor of the hospital to get in to see if her Koala was in the lost and found. Not there. I ran back to the room and see the cleaning cart parked outside of it. I asked the nice cleaning lady if she saw it; no was her reply. Panic starts to set in slowly, this is Kaylee's most favorite snuggle. I ask the nurse at the nurses station, and she says "Well, let's go take a look-see."

We go back to the room, and look under everything. It isn't there. Then the nurse turns to the nice cleaning lady and asks "have you seen a stuffed Koala bear? It was the little girl who just stayed in this room's favorite." Magically, the Koala appears out of nowhere, I glare at the "nice cleaning lady" take my kids favorite stuffy back, and head down to the car to go home. I will file a complaint when my survey gets here in the mail. In any case...

We got home from the hospital yesterday afternoon. The house was clean (thanks to Grandma T. and my best friend Kendra for helping me with the last few things we needed!), cool (thanks to the little swamp cooler that could) and comfy (because it is home). Kaylee immediately was happy because she saw her toy box, and then was sad when I had to pull out the few things that I knew she couldn't possibly get into her mouth (things that she plays with on the floor exclusively), and put the lid on her other smaller toys.

Last night went as smoothly as it could. I think Husband did a good job of keeping Monster all occupied and what not while mommy slept. Daddy is asleep now and I am doing a great job of keeping Monster occupied (for that I must thank Disney and the movie "Tangled" for being my best inanimate friend right now). Now if I could only get her to eat just a little bit more I think things would go a little better. She absolutely hates the syringes. She hates the special feeder with tubes. And she will only tolerate her Habermann for so long before she gets pissed off and stops eating. :(

I will of course keep trying. I mean, I was able to make 5 months on the NAM work out. I think it was cake for me. This should be no different, except it is. This whole feeding thing is important because if she doesn't eat she could get sick and if she gets sick she could...let's not finish that sentence. She is getting some nutrients, but if she doesn't drink more than 24 oz today it will be back to the hospital for IV and probably tube feeding if necessary. I guess we will see.

Anyway, here is me: attempting to feed Monster at the hospital before we left. Notice me = tired. Kaylee = angry-ish. Anyway, much love. <3 JESS

Boy do I look tired. Kaylee is over it.

So, are we jumping this ship or what?

Friday, August 5, 2011

Palatoplasty: The Adventure; Pt. 5

Well, well, well. Guess who ate 5 whole ounces of formula this morning? That's right, Monster ate 5 ounces from her Habermann like a pro. She is on her way back to normal. Hopefully we can get another couple of feedings that successful and get home. I am more than certain she would be more than happy to eat at home. I will be able to get to the grocery store and buy a bunch of her favorite veggies to make a thin soup out of them. I might try mixing veggies to get some new flavors in her bottle. If I can feed her food through that bottle then we will be alright.

Anyway, I finally got around to not only taking, but saving post op pictures today, so...picspam, anyone?

Waking up...groggy.

Nevermind, going a back to sleep.
Well, the rest of the pictures are fail to load, so I will figure out what is going on with that later. Love you guys, <3 Jess, Grant and Monster.

Thursday, August 4, 2011

Palatoplasy: The Adventure; Pt. 4.

Eating...what is eating? Nourishment? Stuffing one's face for the purpose of yum? More vital than we think? My poor girl is still in so much pain she is not eating well still. We are going to be spending another night in the hospital and we keep trying to feed her. Right now the only thing that actually works is the syringe. She only takes 10mL at a time, but it is more than nothing, and she had a dirty diaper because of it. However; she was hooked back up to the IV to replace fluids.

My poor Monster. I wish I could just reach over, kiss her and make it all better. Maybe tomorrow will be better.

Palatoplasty: The Adventure; Pt. 3.

Well. My daughter has to learn to eat all over again. I've been giving her 5cc's of formula via syringe every chance I get. Poor girl. She is starving but refuses to even try a bottle. I try to spoon feed her jello, and I try to give her formula through this strange straw system thing but nothing works except for getting in a few squirts with the syringe when she randomly opens her mouth.

It is going to be a long morning.


Wednesday, August 3, 2011

Palatoplasty: The Adventure; Pt. 2.

Well, it has been quite the day. I'm running on about three hours of sleep a crap load of coffee and just a little too many nerves.

Kaylee came out of surgery just fine. Her palate looks great, swollen, but great. She is having some trouble eating because it just hurts her to swallow, but she is okay for now. She's really grumpy, and she has the hiccups which are interrupting her sleep so she has not been a happy Monster. Anyway, a recap.

When Kaylee emerged from surgery, we knew she was going to have a stitch in her tongue, with a long black thread coming out of her mouth. That is put in so that her tongue (which was also very, very swollen) won't get caught in the back of her throat and suffocate her. If the nurse thought she was having some obstruction issues she would pull on the thread and Kaylee's tongue would pull forward and stay forward for a little while. What I wasn't expecting was this tube that was coming out of her "good" nostril on the right. It was an orange tube that went all the way down into her lungs to help that air way stay clear because of the swelling. The nurse pulled it out while I was holding Monster (it made me cry). Yuck.

Once the nose thing was removed and the stitch in her tongue was removed Kaylee was moved to her room, which is only slightly better than the one she had last time, and the first thing that Grant notices is the size of the what could loosely be called a "bed." Twin sized. I get to sleep in the chair again, which is fine by me because I get to hold on to the Monster.

So far we have only been able to get her to take a few ounces of apple juice and water. As far as full fledged bottle eating goes I think we will wait until tomorrow. Daddy has always been better with the feedings. I have no doubt he will excel this time as well. It just makes me nervous, frankly. Here is my daughter with fresh sutures in the roof of her mouth and I am supposed to stick a bottle in it? No, Daddy can be the hero there.

Anyway, before I try to take a nap before the nurse comes in again and wakes Monster, I just wanted to say thanks to everyone for their thoughts and well wishes. Thank you so much for helping us stay strong today. We really appreciate it. <3 I would post some post-op pics of Kaylee, but we have yet to take any. I believe the best thing for her right now is to rest as much as is humanly possible. I'll get more pictures up tomorrow at least.

Thanks again so much, and I love you all. <3 Jess, Monster, and Grant (the other monster).

Palatoplasty - The Adventure; Pt. 1

August 3rd, 2011.

Check in: 10:45am. Surgery time: 12:45pm; in theory.

Reality:  Check in: 10:30am (because we actually got up on time and all that jazz). Surgery time: 3:45pm. Three hour delay in all. Something to do with partners and associates being behind. Not a problem, it's surgery for crying out loud; not a simple suture.

Our actual stay will be something like 2 days. Originally we though we would just stay the one night, and indeed we still might just depends on how Kaylee does with feeding. And speaking of feeding: we can still feed her with her bottle. That is the only thing that is allowed to go in her mouth past her teeth. Liquid diet and No-No's for two whole weeks. Wewt.

Basically, what they are doing is rebuilding the floor of her sinus cavity and then the muscles of the palate, then the roof of the mouth and finally uniting both sides of the uvula for the first time (I do hope that is a happy introduction).

Grant and I are tired, but holding on. Just finally relieved to get this part of her surgeries out of the way for now. The bone graft and everything else later will be in a few years so I have time to prepare and cope with that one; at least as much as I know how (not easy to be ok with your child going under the knife).

I know Kaylee is probably going to sleep for a while and so we shall sleep when she does. Anyway, that is the current state of affairs in what I call the "Quest for Successful Palatoplasty." That is the technical term for what is being done for the Monster today.

Aaaaaaaaannnd....without further ado: PRE-OP PICSPAM!!!

Sup, Mom?

NOM...NOM...NOM.

OMG Bean bags rule!

Hanging in the play room before surgery.

Hi other child in the playroom, HI!

I didn't do it, I swear.

LOLOLOLOL Daddy is funny.

Peek-a-boo!

Nobody knows the trouble I seen...nobody knows my sorrow. All I need is my tin cup.

Tuesday, August 2, 2011

Night Before Surgery Pics!

So, I decided I would take some pictures of Little Miss Happy Pants (even though she isn't wearing any atm) tonight before her surgery. Then tomorrow I will post some pictures directly before, and then some after and then some after that and so on and so on.

I realize that my last post was a little spastic and incoherent, but bear with me - I'm under some stress. Without further ado, here are some Kaylee pictures! Oh, and some pictures of my Oriental lilies that I took during the day before they closed up. :)

I will get you Elmo...one day.

Chillen' with mah Daddeh.

Hi Mom! Whatcha doin? Can I have the camera?

LOL! You are funny mom!

And now I am upside down.

Surprise close up!
These are the Oriental lilies during the day.

They are so pretty!

They really are this hot pink color as well.

My favorite lily as of now.
Well, picspam! Thanks for reading and I will see you all tomorrow I suppose. Love, JESS

A Little Over 12 Hours to Go!

Well, I am trying to be productive and get things ready to go, so I have once again made a list of things to do...and I will check them off as I go.

List of Things to Do Before 8:00am:
1.   Laundry
2.   Dishes
3.   Bathroom
4.   Vaccuum
5.   Pack Kaylee's bag
6.   Pack our bag
7.   Pack laptop bag
8.   Gather pillows and blankets
9.   Pack Ronan the Destroyer's stuff 
10. Fuel up car
11. Sleep
12. Pack movies to watch
13. Pack toys for Kaylee
14. Get food for us
15. Drop Ronan the Destroyer at Grandpa Thomas' house

Working on the rest, but taking a bit of a break to cool down and stop sweating so much. I guess I should add shower to that list, but I will do that later. Look for the updated list later. I get this way when I get nervous. I wish that the only thing I was nervous about was the surgery, but alas, life finds a way to add more to the list of things I get to deal with. Eh c'est la vie I suppose.

So, I've been working pretty much non-stop at this point and thought I would have a sit down in the cool computer room. I love this little window unit. Anyway, got to go now. I've got more work to do and a baby to feed. She's going to get real spaghetti and meatballs that I've been working on making as well. Last real food meal and then for the rest of the night it will be formula until 5:45 am, then nothing but water or Pedialite until we leave for Denver. Wish us luck ladies and gents, and thanks in advance...<3 JESS

I are sleepy.