Surgery Day - The Very First Surgery.

Ha ha! I figured out my username and password for this blog! For whatever reason I couldn't remember it and I didn't get to "live blog" like I wanted to :( But it is ok. I am blogging now!

Kaylee, Grant and I ended up at The Children's Hospital around 10:00 am. We checked in and waited to be called upstairs to the surgery procedure waiting room on the second floor.

Kaylee and her Daddy.

We waited for about fifteen minutes or so and we were in her post op room, where her history was taken, height, weight, and she was changed into Children's Hospital finery.

Does this dress make my butt look big? Ugh, it doesn't even match my clutch!

She even played a little in her bed while everyone came and went to ask the same questions over and over again. She was measured (26 inches) and weighed (17.5 pounds), and then she played some more.

Sitting like a big girl, and still smiling!

Sock removal process: 0% complete. Initiate alternative protocols: roll over.

Mom...um...you are upside down!

 Then she was swooped away where they put my girl to sleep, inserted an IV and taken into surgery. Grant and I went down to the cafeteria where we were greeted with an abundance of yum, and we ate said yum (pizza). Then we were called back up to see miss thing around 2:45 pm.

A little swollen, but she looks just like her dad now!

 She was very, very groggy and sleepy so we let her sleep. Around six she started to stir, so we tried to feed her like we were told to - she hated it. I was so flustered I couldn't even get a picture :( Grant wanted so badly to cheer her up so he went and bought her a sock monkey!

My head is swimming...why?

After trying and failing to get her to eat she slept for a few hours and then woke up to (of all things) play! She had a happy for just a few minutes and wanted to play, so we played.

I am still a happy Kaylee, I want to grab my toes!

Finally, at 9 she was hungry enough to eat. She ate six whole ounces of food, although it took longer than usual (for obvious reasons) and then again two hours later around eleven she ate a whole seven ounces. She's doing so well that they took her off of the IV fluids not too long ago, and she is now safely swaddled with her animal print no-no's and sleeping the night away (at least I hope so because I am tired).

She looks amazing! More like her father than before, but that is awesome! She is doing really well and she doesn't mind the no-no's as much as I thought, but that could be because she is still slightly loopy from anesthesia. In any case, the lip repair is done, and ear tubes are in place. We have a follow up in a couple of weeks and then we will be a-okay for a few months before we are back here to have her palate repaired. That one might be the hard one, not sure. But for now, we are not going to worry about any future surgeries, we are going to live in this moment for just a while. Until morning anyway.

So, that was her very first surgery. Not as harrowing as I had originally thought, but hey, what else did I have to go on? Have a good night, internet. Love you,     Kaylee's Mom

Surgery Day! The Last Wide Smile.

The last wide smile. I am going to miss it.

Surgery Day! Today...

...or in about 12 hours. I cannot sleep right now. I've got everything ready, but I can't sleep at all. I feel like I am dragging on and on. I am just nervous about everything.

Not only is my Monster going in for surgery, but one of my sisters is in Japan. She is stationed out there and has been for a few years. She has been called upon to help with cleaning and rescue efforts. She is a wonderful mother to two beautiful kids. My nephew and my niece are set to come home to America soon, if there are any military flights that are going out. I am worried for my sister, my brother-in-law, Baby Jesus, and Azaria.

I am just worried in general I guess. :(

Anyway, I just wanted to say goodnight. We'll see you all tomorrow. I'll be blogging for most of the day, until Monster is out of surgery. <3 JESS

Week 18 - Part Three: Kids Can be Cruel.

When I think about the fact that my daughter is going to have surgery soon, I think about all the harder things: feeding with stitches, the no-no's, Kaylee's discomfort, worry about anesthesia etc, etc. Today, I had to say it, I am going to be thankful when this surgery is over, so we can finally get rid of the NAM, and the tape. I am going to be so relieved.

It all started where things normally start for me: Wal-Mart. I hate Wal-Mart, with a passion. It seems like every single time I go to that damned store I get harassed, or embarrassed in some way. One time, I was waiting in line, and my pants decided they no longer wanted to stay on, the whole of the front end of Wal-Mart saw my flowery undies. Once, I was expressly told that I was an illegal immigrant who couldn't read. Those things didn't really bother me. I mean, I was embarrassed that my pants fell down, and I have certainly been called worse things by better people, but it was a child (no more than 10 years old) today, that actually made me sad.

I took my darling girl grocery shopping with me, I like to get her out of the house and I just like taking her with me. While in the check out line, I was emptying my groceries onto the moving belt, minding my own and popping in to make Kaylee smile when a mother with her four children got in line behind me. I could tell they were all related because they all had the same sandy hair, freckles and bright green/blue eyes. As I finished loading my bagged groceries into my cart and moved to pay, I noticed the boy looking in at Kaylee. I didn't mind she likes it when people peek in on her, she is friendly like that.

The following words were passed between this little boy, and his older brother, and his mother:
"Hey, this girl has something on her face." he said, rather loudly.
"Shhh, you're being loud." replied the brother.
"But look how ugly that is. What is wrong with this kid's face? Ewww, [enter evil child chuckle here]." He looked at me directly, knowing that I had heard him.
"Seriously, shut up. You are embarrassing us." his brother scolded, with a look of apology on his face.
"Yeah, but look how gross it is, it's in her nose!" the boy said.
"Mom, tell him to stop." the older boy told his mom.
"What? I didn't hear anything." said the mother while absentmindedly thumbing through a magazine.
"I wonder what is wrong with her..." the young boy thought out loud.

"NOTHING is WRONG with her. She's just fine thank you very much." I said in response.
"Excuse me, you don't talk to my child like that." The mother scolded.
"If you taught your child to shut his mouth, I wouldn't have to talk to him like that. Teach your kid some manners." I walked off, head high yet heart heavy.

How could someone not teach this little boy some semblance of manners? His mom was right there. I remember when I was a child, if me or my sisters or my brother said anything like that we would get a pinch so hard in the arm or leg that it would shut us up. Our parents taught us how to behave in public. If you don't have anything nice to say, don't say anything at all. We were taught that.

I guess it just made me think of how grateful I will be when my daughter will be able to sit in her car seat at the store and someone can just pop their head in and say "Ahhh, what a cutie." That will be the first thing they say. I guess one could call it superficial, they could call it vain, but I just want people to look at the beautiful tiny human I was blessed with and not have to see all the tape, the nasal stent wire, and the duoderm on her cheeks. I want for people to see who she really is, not what she looks like.

I'm sorry, I know my posts have been a little depressing as of late. I am really emotional about this, more-so now that surgery is in two days. I just wish some people would teach others about kindness, and manners, instead of letting snooty nosed brats open their mouths and make fun of a defenseless baby while her mother is in ear shot.

Sorry, I guess I just got upset today. Anyway, that is all for now. I will talk to you all later, you will get a picture posting on Monday night, before bed - pictures of the Kaylee girl's last wide smiles. Thank you, whoever you are, for reading through this entire thing.

JESS

This is how excited she gets when she sees Ronan the Destroyer. They love each other so much!

Week 18 - Surgery: The Details.

So, we got the call from Dr. A's office to let us know what is going to happen on Tuesday.

Kaylee's surgery is at 12:15pm. We need to be there 2 hours earlier for check in and anesthesia. She cannot have any thing to eat after 6:15am. She will be allowed to drink water, Pedialyte, or watered down apple juice until 9:15am. After that, she can't have anything.

Surgery will take approximately 2 hours, and she will be in a recovery room for 2 hours afterward. She will be spending the night, and maybe a lot of the next day, depending on how well she comes off of the anesthetic and if she can eat a certain amount.

She will have desolving stitches and no-no's on her arms for up to two weeks. She will have a follow up in April.

That is about it. A lot simpler that I originally thought. As I said before, I will be basically live blogging the event before, during and after with lots of pictures (both here and on facebook) should anyone want to follow progress.

In any case, I just wanted to say hello and tell everyone what is going on. So, now I leave you with a bit of cute with a story behind it:

Kaylee grabbed Jack by the throat and said "Jack Skellington, I choke you." She then slowly put his head in her mouth, slobbered Jack and threw him on the floor. "Jack, you suck." Then Kaylee laughed the evil laugh of a girl who will one day rule the world. The end.

Week 18 - The Final Countdown.

So, here we are. We've made it to the last week of her NAM. Oh boy. It's really starting to sink in that this is going to happen. My Kaylee is going to have surgery.

Her adjustment went well. There was only one thing the good old Dr. H wanted to do and that was to raise up her nostril just the tiniest bit. I was nervous after what happened last week and having to go to the office in Cherry Creek. But she raised it just a smidge and Kaylee was completely okay with it.

In other Kaylee news: she is doing wonderfully when it comes to sitting up and rolling over. She likes to be sat down and then she rolls onto her side to roll onto her stomach; it is the cutest thing. Now if I could only get her to do it on video. As soon as the camera comes out she gets performance anxiety and just stares at me. LOL. I love my little cutie.

Anyway, we took pictures of Kaylee with Dr. H and the dental hygienist Jessica for her last visit to the office. They were sad, they said that they are going to miss her. Considering how close Children's Hospital is to the dentist office I figure we will pop in and say hello every time we have to go the Hospital for a checkup. Plus, Dr. H is going to be Kaylee's dentist forever. I know it is a far drive just for dental care, but Dr. H knows Kaylee's mouth and I think she is the best for the job.

So, yeah. here are some awesome-sauce pictures of my Kaylee on the first day of her last week with the NAM.

I'm ready to go now! I look pretty.

Oh! I have shoes on.

Seriously...take them off. I can't feel my feet. (She started crying shortly after this pic was taken. I think because she couldn't touch her toes.)

 

 

 

Week 17 Part 2 - Monster Screams Loudly.

Well. The last three days of our lives have not been very pleasant at all.

Normally, on adjustment day, Kaylee is a little grumpy. The change in the NAM is not super severe, but it is enough to cause a couple of hours of discomfort. This was the case, as usual, for us on Tuesday. She was a little grumpy, and upset about the bulk of the nasal stent; however, that is pretty much par for the course for us.

The day after the adjustment she usually has forgotten that her NAM was ever changed and life goes on as usual. But for us on Wednesday, she was more grumpy than normal. I did all of the normal Kaylee distractions that I could to keep her occupied. As the day wore on she became more and more distraught. She cried really badly before  bed, and would only go to sleep if Daddy held her. Once she exhausted herself with enough crying*, she went to bed for about 10 hours straight.

Then, this morning, she woke me up with the most terrible screams I have ever heard from a baby...any baby, not just her, but any baby I have ever come into contact with. We tried everything we could think of: changed diaper, changed clothing, cleaned orifices, played, cuddled, tried to feed; not a single thing worked. She cried for three hours straight. Finally, around 11 am it was time to change her taping. The moment I removed the NAM - complete silence and then a tiny baby sigh of relief. I didn't even know that babies knew how to sigh.

At that point Kaylee had not eaten more than two ounces of food. We tried to feed her with a syringe, when that didn't work she had cereal spoon fed to her. Then she grumpily slept for a couple of hours, tossed and turned in her pack and play, and then cried randomly when she would accidentally touch her upper lips. 

I called Dr. H because I was so incredibly worried. Kaylee wouldn't even  let me touch her cheeks she hurt that badly. Dr. H had us in today at her Cherry Creek office so that she could see what the problem was and fix it. Once it was fixed and put back in place Kaylee was happy as a peach. And then she ate. A lot. A total of 24 ounces in about 4 hours. She was that hungry.

Now she is contentedly asleep in her crib, swaddled, warm, and NAM in place. Now I can breathe a sigh of relief.

After we got home from our emergency trip to Denver, Kaylee discovered Daddy's hat!

It's an Evil Monkey hat.

She really enjoyed wearing it.

And looking at herself in the mirror whilst wearing said hat.

* Just to clarify: we do not do the cry it out method. We put her down and let her fuss for ten minutes, but she never cries on her own for longer than that.

Week 17 - Two Weeks Left.

Well. Today has not been a good one for my little Kaylee girl. She is very, very upset. To say the very least.

She had an addition placed on her nasal stent which is pushing the gums down toward her lower jaw. So, it hurts. I think that the piece that was added also blocks her airway a little. She seemed to have some trouble breathing, so I loosened her mustache and went with a more triple stretch than a double on her rubber bands to compensate. She should get used to it soon. She just stopped crying about ten minutes ago, and I can finally breathe a little. My poor, poor girl.

In other news, we are still on for surgery in two weeks exactly. It has been quite a ride so far, and now we are looking at an even bigger one with her first of many surgeries. I am excited, yet nervous and just a little bit afraid. Excited because she will finally have an upper lip and no more NAM. Nervous because my daughter is going in for surgery. Afraid because she is my daughter, and the last thing any parent wants is to have their daughter or son go through something like this. Alas, we shall persevere.

Kaylee was a superstar for her appointment today though, she had the room full of pediatric dentists laughing. She just loves to giggle at people and make them smile. She showed off all of her newly acquired skills like rolling over, and sitting on her own. And she even grabbed a few handfuls of hair (which she loves doing thanks to Grandma M). She is such a happy little girl and the world loves her.

I leave you with a pile of cute: Kaylee Monster.

Hello world. I am on my Exersaucer.

Slurp.

No, I was not just pulling on my NAM.

Week 16 - A Very Late Post.

So, this is the end of Week 16. I meant to post a lot earlier, but I have been a very busy mother.

So, at this week's appointment we had no adjustment to her NAM at all. The doctor was very happy with the taping and the movement Kaylee is showing. She is also very impressed with the way her nose is shaping up. I cannot believe how good it looks myself. We were also asked if we would volunteer to show how taping is done for their website which they are developing now.

For Week 17 we are going to be seen by not only Dr. H but also a new pediatric dentist who is learning the technique and will be working with Dr. H soon. She is getting so much work being the only Dr. in Denver who does the NAM treatment (as far as I know). We will also be photographed again for this visit as well.

I've decided that I am going to train for a 5K. It is for the Hot Lips Hustle 5K run walk. It is a fundraiser to help kids with cleft lip/palate in countries which has little treatment options. It is in Georgia in September so I would like to try to make it. Even if we can't it will give me some much needed exercise.

In any case, here are a few photos that I have taken over the last week. This week's mantra is: "Two more weeks."

Beginning of Week 16.

Kaylee and our 5 year old pitbull Ronan.

I can sit all by myself now!

Yep. I rode the carrot train!

Hanging in my Exersaucer!

Week 15 - Four Weeks to Go

Well, these last two weeks went swimmingly. Other than the fact that Kaylee refuses to keep her NAM in at all, we have done well. To be fair, she has her NAM in all day and night. She randomly pulls it out because she can when she thinks about it. When she is playing or eating or sleeping she is not thinking about it and we have no issue, as soon as she remembers that her NAM is in, well there it pops out. I can tell now by her sounds alone when she has removed it...like right now for example. I put her down for her afternoon nap and guess what - NAM is out. Be right back...


Well, now that that is taken care of, today we are told to keep up with the double stretching on her to move the last millimeter along. Wewt. We also saw her boyfriend today. His name is David. He is six months old and has a bilateral cleft lip and palate. He is adorable. Anyway, that is pretty much all I have to report other than she rolled over from front to back finally.

Yeah, that is about it. So, here you are....cuteness.

Kaylee and her Boyfriend David. <3

Yay! I am ready for a new week!