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!

Week 14 - A Little Bit of Heartache.

Well, I've had a week. Kaylee has been perfectly fine. Other than one day of ouchie due to a diaper rash, she's been great. She is getting so big, and so vocal. It really is adorable. It is actually really hard to believe that she will be five months old very shortly. I can't believe how much being a mom has changed me, and my life.

However, this week I became distraught and I thought I would tell all of you why.

I was sent a comment on this blog (which I have to approve/deny) which I deleted because of it's very sensitive nature. I was sent an anonymous comment which had a picture of a deceased infant. Underneath that picture was a comment: "Be glad this isn't you. Quit complaining."

For the record, I am completely thankful that my daughter is alive and I feel for any mother who has lost a child, I cannot imagine anything more horrible.

That being said, I don't feel as though I "complain" about my daughter. I am merely expressing my feelings about our own situation, which is unique enough to warrant discussion. So, I will continue to do what I do for my daughter's sake. This is a blog more for her than anything else, and for others who find themselves faced with the challenge of having a cleft affected baby. To help those who read this to understand what I have gone through I offer this:

c1987 by Emily Perl Kingsley. All rights reserved


I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy.

You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and
Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Here you can find the original poem/story -Welcome to Holland.

And to end our day or start our morning depending on where you are at in the world:

Kaylee Monster in the Ocean Swing of Doom.

Week 14 - A Week Off.

Not off of her NAM, but off of having to drive 110+ miles to see Dr. H. I don't mind the drive, but I got to save some gas this week and that is a good thing. Dr. H gave us the week off because she thinks that things are going that well. So, we are glad about that. She says that Dr. A (our surgeon) is going to love working on Kaylee because of how "well" I have been taping her.

That was probably one of the nicest compliments I have gotten. Strange.

Anyway, five weeks and counting until lip repair surgery. I will be taking my laptop with me and using the internet at Children's to post pictures. It will be almost streaming. LOL. What else will I be able to do while my daughter is in surgery? At least this will keep my mind occupied for a while.

Anyway, nothing new to report over here. Just that Kaylee and Ronan the Destroyer(our dog) have come to an agreement regarding the floor space. Ronan has agreed to rent it to Kaylee at the price of a daily face lick and three Beggin' Strips. They are adorable together. They really are.

Well, Princess Wigglebottom has come up from her nap. So I must attend to a probable poopy diaper and a hungry infant. Until next time,
JESS

Week 13 - A Revelation.

Not a big revelation by any means, but a revelation none-the-less.

Kaylee has no uvula. A bit strange, I know. And for those who do not know...the uvula is the hangy thing at the back of your throat. The first thing I thought of when I saw this was, "at least she can't get it pierced!" and yes, they can indeed, pierce the hangy thing in the back of your throat. I was going to get it done once but chickened out and got my tongue pierced instead. :)

Anyway, that was just something I wanted to bring up, because I decided to do some research on the subject of a missing uvula and what that might mean for her in the future. And I found this happy tid-bit from the most reliable source on the interwebs - wikipedia! The research is backed up by the many medical journals that are listed on the sidebar of this blog :)

"When cleft palate occurs, the uvula is usually split. It occurs due to the failure of fusion of the lateral palatine processes, the nasal septum, and/or the median palatine processes (formation of the secondary palate)."

I just thought it was interesting. I had read it before during my initial research about this, however I never really looked at the back of Kaylee's throat to check. So, yeah. That was my revelation for the day.

Enjoy the barrel of happy that is my Kaylee!

Even moar nekkid Kaylee! My pickle is too cute!

Week 13 - Of Snow and Other Things.

Colorado is such a lovely place. The un-official state saying is "if you don't like the weather, wait 5 minutes it will change." It is so true. Last week, we had highs near 70 - near 70 in Northern Colorado. This week, snow, and subzero temperatures. Fun times.

So, her Week 13 appointment was supposed to be on Tuesday of this week (1/31) however, because it was below zero and we do not have a garage or carport, our car froze and would not turn on, period. There was no click over, anything. It just wouldn't do it. So, we rescheduled her appointment for Thursday (2/2). My thinking was this: "forecast calls for 32 degrees, and cloudy." I forgot to check the forecast before I left and instead the weather was 32 degrees and holy crap snow! And lots of it. It snowed like crazy in Denver. It took us two whole hours to get home. We ended up borrowing Kaylee's Grandma Thomas' car because the heater in ours kinda blows - cold air that is.

Anyway, we are at the point in her NAM treatment that we no longer need to see Dr. H every week, and will now be going every two weeks until the week before her surgery. Eeeek. No more weekly trips to Denver? I think I might just be bored without that trip. As I said, she no longer needs to go once a week. She is doing so well, and Dr. A her surgeon really is liking the taping that I have been doing. He likes how in just two weeks the nose piece has really rounded out her nostril . I have yet to get a good picture of that, but that's ok.

I am getting fairly excited about the upcoming surgery. Of course, scared, but excited. I can't wait to see what her new smile is going to look like. I can't wait to see how she does feeding with an actual lip. She still will not be able to suck on anything, like make the sucking motion or whatever, but she will be able to make a seal around things with her mouth. We might be able to start teaching her how to drink out of a sippy cup that doesn't require suction (if there is such a thing).

Well, I suppose that is really all today. It snowed, Hurray! We took the slow road home, and we are that much closer to surgery number one. To end the day, almost nekkid Kaylee cuteness!

With Grandma Molina - nekkid Kaylee. Don't you just love the chubby rolls? 

I do