Week 12 - And Counting.

So, I had an interesting week.

Remember what I had said a little while back about not having had breakdowns over my daughter and what she has to go through? Strike that, because I had another on Tuesday. I called our surgeon to schedule Kaylee's surgery. Good old Dr. H said that Dr. A would not schedule surgery any farther out than six weeks or so. So, last Tuesday would have been five weeks out and we were told by Dr. H to schedule.

When I called, the schedule lady said that the earliest he had was in the middle of April. April. Three months. Three more months. So, I cried. My glorious mother helped me through it though.

However, it would seem that schedule lady is a bit off on her scheduling game, because Dr. A called me back by the following morning and had us reschedule it for March 15. 7 weeks. He apologized profusely for his schedule lady, she is always supposed to refer to him and ask him when he wants to do the surgery. Anyway, long story short: March 15th. My beautiful little girl will be ready for surgery in 7 weeks.

The only reason she would have her surgery canceled would be if she got sick or if she had ibuprofen (which you can't give a baby anyway). So, we should be just fine. She will have her lip repaired and ear tubes placed for proper drainage. YAY!

Kaylee did smashingly well this week. I have to applaud her for being such a strong little girl. And you see, she is the main reason why I don't cry, gotta be strong for her. Anyway, here are some pictures of cute, see you next week.

Without her NAM. See how close her lip sections are? This is at 12 weeks and 4 days with her NAM.

For the Horde!

Week 11 v.3 - We End Week 11 on a Boring Note.

Well, it seems as though Week 11 went by in a flash. My goodness. So, Monster is officially four months old. She got her shots today. She is tolerating her nasal stent as well as could be expected, I guess, I don't really even know what I am supposed to expect. We go back to Dr.H in the morning to adjust the NAM and maybe even get a surgery date. Fingers crossed for that one.

Kaylee did well at her appointment today, so that is good. Right on track developmentally. She did really well with the doctor. Tried to eat his fingers. It was cute. Other than that things have been pretty well boring around here. Except that Kaylee got a Bumbo Chair that she loves, and yeah.

Pictures of her for this week are mostly playtime, no real changes to her appearance as of yet. Talk to you all later.

She PWNS n00bs.

Tummy!

Week 11 v.2 - Nasal Stent Madness.

Now, I know what you all are thinking: "another post this week?"

Today has been - horrifying. That is about the only way I can describe it.

Kaylee cried all day. I can imagine that it hurt. Goodness knows that not only is her upper jaw killing her, plus teething, and now a piece of plastic shaping her nostril adds up to a lot of pain. For a four month old baby girl, I imagine that she thinks we are torturing her.

Not only has this been hard on Kaylee, I had my very first breakdown. I have never really had any kind of major breakdown. I mean, I never really got the "baby blues" or whatever it's called (those moments of random, spontaneous crying, etcetera). This is about what I would imagine the "baby blues" are. I mean, I cried when they told me what she was born with, but once I did a little research, and talked to a couple of grown ups who have a repaired cleft lip/palate I have been determined to be strong for my little girl. I have to be.

Today, I broke down sobbing. I cleaned her NAM and put it back in. She screamed, and cried and tried to put her hands in front of her face. All the while I am saying to myself and to her "it is ok. This is for your own good. Baby, I'm sorry. I know it hurts." Once I got it put in, she just screamed. Her face turned red, and she looked at me like I had been the meanest person in the world. All I am trying to do is be a good mommy.

She finally fell asleep. Now I am sitting here trying not to feel like the worst person in the world. I love my daughter and I feel like I am torturing her, to fix her. It needs to be done, but god does it hurt. Anyway, I just needed to get that off of my chest. I know that one day she is going to thank me for doing what I had to do to make sure that she has a normal life. I wish I didn't have to, but I do. And I will, until the day I die, I will.

Here is some cuteness to end our depressing post:

Her Squishy. Her Auntie Axhure made this (one of our WoW friends).

Week 11 v.1.0 - Nasal Stent in Place!

Well, finally we have a nasal stent. In six weeks Kaylee will have her first surgery. Wewt! We are on the right track! I call it her nose ring. She is trendy already! All she needs now is the AC/DC shirt that Grant's cousin Chandra gave her and her black leggings and maybe some black eyeliner and she would just like me (when I was in high school anyway). Just kidding, hopefully she doesn't repeat my fashion mistakes. Anyway,  here she is with her "nose ring" and one with her dental hygienist Jessica.

Side view of the "nose ring." Stylin'.

This is Jessica; dental hygienist for Dr. H.

NAM Week 10. Curses! Postponed...Again!

Well, this makes the second time that Kaylee's nasal stent placement has been postponed. It is ok, there are things that are out of our control; the weather for example. On the day of her Week 10 visit it snowed. A lot. Unfortunately, we live on a snow route, and we only have off street parking. That means that every time it snows, the street plows come down our street and piles the snow up against our car. Nothing we can do about it. So, we got snowed in. Hurray (/sarcasm).

In any case, we are going to her Week 11 visit tomorrow. We are definitely going to get her stent put in tomorrow, and we are going to schedule her first surgery. I cannot, and words cannot express how anxious, sad, and terrified I feel. Anxious because let us face it: my daughter will be having surgery. Sad because I feel bad that she has to go through it. And terrified because she is not going to know what is going on, why she is going through it and I can imagine that she is going to feel terrified as well. I am terrified for my daughter.

All my feelings aside, Kaylee has been doing wonderfully. She is such a happy little girl. As far as I can tell she is developing normally. She likes to sit up (although she has yet to do it on her own), she grabs for anything and everything, and I think she is teething. She started biting last week, and the spot where a tooth is coming in was bleeding the other day. Baby Ora-gel has been a blessing lately. The only thing I worry about is her weight...she is a little - hefty.

I will, of course, be asking her pediatrician about it next week at her 4 month Well Baby visit. She gets her second round of shots and I can see what the doctor says about her. Which reminds me: Dr.K (pediatrician) has never seen a NAM before. Last visit he was quite intrigued by the appliance, and wondered if it was safe for her. He said he would do some research and find out. Of course, I am not worried about it one bit, the Cleft Palate Team at Children's recommended it - so it is safe in my book. All it is is plastic and tape, nothing too harmful; we've had absolutely no problems with it thus far. *shrug*

Anyway, that shall be all for now, I must go and get Kaylee's bag ready for tomorrow, and sleep too. So here is Kaylee, Week 10 of the NAM treatment. Enjoy!      Jess.

Nose is looking more and more normal.

The cleft space is slowly shrinking!

Oh, the Joy of Postponement. NAM Weeks 8 and 9.

Well, since our last posting almost nothing has happened with Kaylee's NAM. Only one slight adjustment.

At her Week 8 appointment she was moving along fairly well and we were told that at the beginning of Week 9 we would have her nasal stent in. However, the doctor decided it would be best to wait another week. We saw very little movement from Week 7, but Dr. H explained that it is the last few millimeters that are the hardest to move; that the nasal stent will be in for up to 6 weeks and that will be more than enough time to move everything.

At her Week 9 appointment, I was late to her appointment. It was inconvenient,  however it was necessary. I had my own doctor appointment to attend. In any case, since I was late we rescheduled to have the nasal stent placed during Week 10 instead. Dr. H needs an hour or so to mold the wire that will attach the nasal stent to her appliance. Should be fun.

Anyway,here is a picture of my little family (fur baby included) on Christmas, as well as Kaylee's Week 8 photo, and one of her playing with a toy. Just because. :)

From Left: Ronan The Destroyer (real name), Jessica (myself), Kaylee (duh) and Grant (babydaddy).

Nom. Nom. Nom. And indeed, I do, in fact, rock.

Week 8: tired and tired.

NAM...Weeks 5, 6 and 7. Busy, Busy, Busy.

Well, I've obviously not updated in a couple of weeks. Got to love, love, love the holidays.

Moving on. There is not too incredibly much to update on, really. Kaylee Monster got her new NAM a few weeks ago. This one was fit to her new mouth size, and at the Week 5 visit we were told her space was back up to around 6 millimeters. So, a little backwards progress, but perfectly normal and natural according to Dr. H.

However, at her Week 6 visit we were surprised to find that she was now at a 4 millimeter measurement and not only that but that the two sides of her upper jaw were now close enough to completely reshape her NAM so that it is more like an actual retainer, that is to say that the bit of the NAM that went into the cleft of the roof of her mouth was complete shaved out. It now houses her entire upper jaw.

Week 7 did not warrant a visit because Dr. H. has gone on vacation. So, we got a break on driving to Denver which is always good. One week without having to refill the gas tank. I am noticing, however that her upper jaw and the space in between it is getting harder and harder to clean due to the fact that I can no longer fit the Q-tips through that space any longer!

Literally in the last three weeks I have watched as these two sides have come closer and closer together to the point of almost touching. Soon enough she will have her nasal stent put in to shape her nostril and then she will have her first surgery. I can't believe how time has flown. I am so excited to see her new smile, even though I know I will miss the old one.

Developmentally, I am finding that she seems to be on the right track. Tummy time is going better and better everyday, and she is showing signs of wanting to sit up on her own already. I've also noticed that she has discovered her hands and mouth and wastes no time in trying to fit her fist and her nipple in her mouth at the same time. I've caught her sucking on her thumb, and also pulling on her tongue. She is doing well. She even made me cry the other day...she giggled at me.  A real, honest to goodness giggle.

She is already three whole months old. They grow so quickly, I can remember finding out I was pregnant around this time last year, and now she is three months old. Anyway, I've had some computer problems in the last week and all of her NAM pictures plus all of her normal everyday candid photos were not save-able. So I don't have any pictures of her mouth for the last three weeks, I will get a picture of her upper jaw tomorrow at the dentist's office and will post that when I get home.

Week 8 begins tomorrow, and I am hoping we do get her nasal stent and also hoping that we get an appointment date for her first surgery. We know her surgeon is going to be a Dr. Allen who works at Children's in Denver, so that will be good. Hopefully around the beginning of February. We shall see and I will let you all know, of course.

Well, that is all for now and please excuse the wall of text today. I will leave you, however, with a bit of cuteness: Kaylee in her Christmas outfit! Happy Holidays! The Thomas Family.

She was angry. But you can kind of see her nose and how much better it looks.

Week 4...The NAM is Too Big Now.

So, as we progress through with the NAM treatment, we've come to a startling realization: the NAM is now too big for her mouth. Since the goal is to move her upper jaw into it's proper alignment it is logical that as it is moved the apparatus moving it would cease to fit in a smaller mouth. We get a new one today (incidentally this is the middle of week 5, but I've been too busy to update:), and she will start week six with a new NAM and a few more millimeters of movement. Soon we'll add the nasal mold to help shape her nostril.

As of last Tuesday (three days ago) she was at 5.5 millimeters. She is doing so well, even Dr. Harris was surprised. We are moving along right on schedule and should have surgery scheduled for the end of January or beginning of February - that is if all things continue to go smoothly. As the time goes by, however, I get more and more nervous. Until I had my c-section I had never been in surgery and thought that was the scariest thing ever. Now as Kaylee is moving along towards her first of many surgeries, I realize now that this is the scariest thing ever. No parent wants to have their children go through that.

Anyway, Kaylee is now 10 weeks old. She is developing wonderfully. We are getting hourly smiles - big toothless grins that just warm the heart. She is discovering her voice and will talk your ear off about something only she understands. Her hands have become an object of fascination for her, and she is figuring out that the pink hippo squeeks, so she laughs when it does. My daughter is becoming a little person, and so far she seems very, very content. I'm dreading her growing up, but that is what they do, they grow up.

Here are the pictures for this week. Enjoy them. Love - US.

Week 4 - 5 and 1/2 millimeters.

A smile at mom. I couldn't help it she is too adorable.

Week 3...Just Keep Moving Along.

Well, we certainly had a much better week this week. Despite having more tape added to her treatment, she is tolerating it pretty well. Before the one piece of tape across the top of her lip (called a "mustache" for obvious reasons) was pulling her upper jaw in one direction. The addition of a second piece of mustache now pulls her upper jaw in both directions...inward, toward the middle of her nose. This is going to further her progress.

How is her progress you ask? Well, when Kaylee was born her cleft was measured. It measured 12 millimeters. Since we started her NAM treatment her cleft has been reduced by 4 millimeters. So now, she is at 8 millimeters. Her dentist said that she didn't expect that kind of movement yet, and she is very glad that Kaylee, myself and Grant are so dedicated to making this treatment work.

Tomorrow we begin week 4 of her NAM treatment. In addition to that my Monster is getting her first shots. All in the same day, all due to scheduling conflicts with her doctors. I wanted to do them each on different days to avoid having the most pissed off two month old in the world tomorrow, but it didn't work for them. So, oh well I suppose. Oh, Kaylee had her weigh in last week with her nutritionist...11lbs and 12oz. She has gained almost 3 pounds since birth, and is the 76th percentile (out of 100 2 month olds she is heavier than 76 of them). This is a good thing, it means she is healthy.

Anyway, without further ado...here is her 3rd week picture. And a few of her smiling just to lighten up the day!

Week Three.

Smiling at Mommy.

 Just a little grin.

Week 2...Oh, the pain!

So, it has been two weeks since we've had Kaylee's NAM in. And it has been two weeks of pure anguish for her. Imagine (anyone who has had braces will agree with this) that your upper jaw is being stretched in one direction and there is nothing you can do about it, the pain that would cause is immense. Now, imagine that you are barely two months old going through that. Talk about pain.

By doctor's orders we are only allowed to give her one does of infant Tylenol per day, so we have to give it to her wisely (or as wisely as we possibly can). As a result we have a grumpy baby most of the day. Yesterday she cried for about four hours solid - no breaks - before she finally fell asleep for 20 minutes; only to wake up again to be fed and then cry for another few hours solid. Some might say she is colicky, but take the NAM tape off of her and the tears, crying, and screaming stop dead in their tracks.

As much as my Monster is in pain, the benefits outweigh the discomfort. Fewer surgeries, more facial symmetry, and a healthy childhood are all more important in the long run and let's face it: She will not remember this. It is only because of that fact that I allow this to continue. It hurts me to get up every morning, remove the tape and the NAM to clean it and then shove it back in her mouth, then pull and tape her cheeks. Every morning she screams in pain, and yet it needs to be done.

In the end, it will be worth it. If you scroll down to one of her first pics you can see how wide her cleft was. It was so wide that the good shaped nostril on her nose (her right side) was smushed (which I know isn't a word, but it is the most appropriate here) and you couldn't see up into her nasal cavity like a normal person's; it was just a tiny little slit that no oxygen could get through and she had to breathe through her mouth exclusively. Now - the nostril has opened up just a bit and she can actually breathe through her nose! She is getting better oxygen while she sleeps, and she is eating better because she doesn't have to do everything through her mouth.

Without the tape, notice her right nostril is open!

Here, they had to pry open her nostril to put the feeding tube in.

If you look hard enough at the two pictures you can see the width of her cleft has been reduced a whole lot! I just noticed it myself after looking at the pics side by side. Obviously, what she has to go through is so worth it. And since she is growing steadily I am sure the doctor will allow us to give her just a bit more infant Tylenol. I will be sure to ask at our next visit.

So, there you have it. Week two complete; roughly 18 more to go (give or take a couple depending on what the dentist says). Tune in next week, we'll have a new picture up, and a new batch of experiences I am sure. Thanks for reading,

Jess, Grant and the Kaylee Monster.