Monday, December 27, 2010

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.

Friday, December 3, 2010

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.

Monday, November 22, 2010

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 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.

Sunday, November 14, 2010

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.

Friday, November 12, 2010

The First Stage...Continued.

Sorry, it has been a while since I've written. It has been a busy couple of weeks for us!

So, our story so far: we had to reschedule Kaylee's NAM appointment and as of two weeks ago Kaylee had her NAM placed. Our first appointment was a meet and greet and then the molding of her mouth. Her dentist is a very nice woman, who is very talented with this kind of procedure. The fitting was the most horrible thing I have had to do with my daughter since she was in the NICU. I had to hold her down so they could put a mold with silly putty in it to take the impression of her mouth. She was not happy at all. I cried. But it is worth it in the end.

Here is the NAM itself:

Before her NAM was placed:

After NAM placed:

Week one:

So far, the doctor says thins are going well. The main goal of the NAM is to move her upper jaw into normal alignment. Once her gums have moved closer together she'll have her first surgery to close her lip, and maybe her gum line. Her first surgery won't happen until she is at least 5 months old probably. Until then my strong little girl is developing as normally as any other newborn would.

She started smiling this week, and she is sleeping for longer and longer stretches of time (for which both my husband and I are very thankful).

Monday, October 25, 2010

The First Stage...Postponed!

So, last week we were supposed to see the pediatric dentist to get Kaylee's NAM started. However, about 10 minutes before we were to jump in the car we were called by the dentist's office because the dentist got sick and needed to reschedule. So, tomorrow is the day instead.

I am getting nervous again. I just want things to go well. So, as I said last week, I will update with pictures after the fact. Although, I don't know if I mentioned that since this is our first visit and the NAM is a custom unit we might not get it in tomorrow, we might just be getting her mold done, not entirely sure. So, I will update either way, with or without photos tomorrow.

Tuesday, October 19, 2010

The First Stage.

The first stage of Kaylee's treatment starts tomorrow, or officially in about 10 hours. We are off to see her pediatric dentist in a few hours. She is going to be fitted with a device that is similar to a retainer or braces.

The NAM device or Nasoalveolar Molding. 
The goal of the NAM is to reduce the number of facial surgeries Kaylee will need throughout the course of her treatment. Tomorrow we are going to have her mouth molded and a pediatric dentist is going to form and fit her NAM. The NAM will be in place for approximately four months or so, and will be adjusted weekly (in Kaylee's case) until she is ready for her first surgery. Some children have it in for up to six months, usually because they have a bilateral cleft.

So, I am going to go ahead and leave it at this for now. Later on after she is fitted and has the NAM placed I will be adding her pictures. I am not entirely sure if she will have the NAM placed tomorrow or if she is just getting her mold done. I don't know much about the fabrication of the device, but she will either be getting it tomorrow or next week. Hopefully tomorrow. I want to get this show on the road.

Pictures will be added once we return from the Children's Hospital in Denver.

Cleft Lip and Palate. The Details.

Having a three week old is not exactly conducive to a good night's sleep. Having a three week old who is also has a hard time eating is less so. She is currently lying next to me, after having eaten her four ounces, burped twice, and spitting up once, a silly newborn smile on her face as she slowly drifts off into infant dream land. I type away as fast as I can to get enough info into this post before she wakes up to be changed and fed again.

As far as cleft lip and palates go, there really is no "good" place to start. I suppose the best place for anyone to start is to start where I did: a pdf from the Children's Hospital in Denver, Colorado.  After branching out and viewing many more websites and medical journals (links will be added later) I have expanded my knowledge as best I can without becoming a dedicated student of the subject (considering I have a newborn I don't quite have that kind of time). I offer all of that here.

A cleft lip is an opening in the lip, likewise a cleft palate is an opening in the mouth's roof. It is possible to have a cleft in the lip, mouth and gums or any combination of the three. A cleft lip and palate occur during the fifth and seventh week of an embryo's development. During those weeks the gums, mouth and lips pull together and form. For one reason or another, 1 in 700 embryos fail to complete this part of their development.* It is more common to have both a cleft in the lip and palate, it is also more common to occur on the left side of the face.

The cleft lip and palate can affect appearance, feeding, speech, ears, hearing, teeth and can impact a child socially. With regards to the appearance: there are no missing parts of the baby's body, they are all there, they just didn't come together. They can be unilateral (on one side of the mouth), bilateral (on both sides), complete (all the way to the back of the throat) or incomplete (partially in the roof of the mouth). Kaylee has a complete unilateral cleft lip and palate.

Children with cleft lips and palates may have problems with their speech. Certain consonants are more difficult for the child to pronounce. Kaylee will be needing speech pathologists help later on during her preschool years. She will be more prone to pronouncing vowels.

Because of the cleft in the roof of her mouth she is unable to suction properly. She is unable to eat as a regular baby should, sucking on a bottle or nipple properly. Instead she must compress the nipples in order to pull liquids out using a good portion of her palate, and her tongue. As such she uses a special nipple called a Haberman Feeder. It allows for easier compression.

The treatment for this condition is a lengthy process which includes several different surgical procedures and dentistry. Her treatment will last well into her teenage years, and possibly into adulthood depending on the severity of the cleft. First, doctors will perform surgery to close the opening in the lip, usually around 3-6 months of age. Between 9 to 18 months they will perform surgery to close the opening of the palate, these surgeries are usually done per the doctors preference.

What does all of this mean? It means I didn't do anything wrong. It means that things happen, and that now we just move on and deal with what has happened. As for Kaylee, she is a happy, healthy baby. She is gaining weight at a normal pace, and even though we have some issues with the special nipple for feeding (excessive gas being one of them) all is going well so far. Tomorrow we meet with her pediatric dentist to have the first step in her treatment started, and that is going to be another post all together.

*All information is from notes that I, Jessica, took from the meetings with her various doctors as well as from various sources on the internet which will be added to this site at a later date...Kaylee needs to be changed and all that first :) Ahhh, life with a newborn.

Sunday, October 17, 2010

The Reveal.

As I said before, I did not see my daughter right away. I actually did not see my daughter until she was almost four hours old. I remember being on the operating table, having felt the pressure of tugging, pushing, and pulling on my abdomen. I remember hearing the faintest little cry that brought me to tears. That cry was my daughter's first breath of air. I remember Grant holding my hand and I remember how we both waited to see her.

This was the day after she was born. We weren't allowed to take a pic the day she was born.

I remember that I had to ask the doctor if she was okay. I had to ask if she was even a girl (because they say the ultrasounds are not always accurate). Then, suddenly they whisk her away to the NICU without showing her to us. We were unable to get her first picture, Grant didn't get to cut her umbilical cord. Heck, one of the nurses had a hand on Grant's shoulder and wouldn't let him get up to see what was going on.

I remember the fear that something was severely wrong, deathly wrong with my daughter. I mean, obviously that would be the only reason to not even show the mom her child right away. I remember trying not to panic as I waited in the recovery room for someone to tell me what was going on. Grant and I nervously sat there waiting for someone, anyone to tell us that something was incredibly wrong.

About a half an hour after we were in the recovery room, a team of doctors walk in. They tell us what we've been waiting to hear. Dr. F who delivered Kaylee and was my prenatal doctor said, "she was born with a bit of a cleft in her lip and her palate. She's in the NICU for observation." Immediately, my husband and I both thought "THAT'S IT?!?"

My immediate concerns were: is she breathing, does she have all of her limbs, is her heart okay, did she pass all her newborn screenings, and is she going to survive? The answer to all of those were: yes. Then why on earth did they keep my daughter from us? Why did they deprive Grant of the experience of cutting the umbilical cord? Why didn't they use some kind of tact? I could ask all the questions in the world and never get an answer.

After all of that, my only thought when I saw my daughter for the first time was: she is perfect. This is the truth, she is a gorgeous blue eyed, blond haired, beautiful girl. How she got the blond hair and the blue eyes is beyond me. While I understand the basic mechanics of it (Punnet squares and all) the genetic permutations are to numerous for me to calculate on my own.

I wish the doctors would have been more open. However, after thinking about it, I think the doctors chose the lesser of two evils in a way. On the one hand they could have told me right then and there, but would have scared the crap out of an already scared woman who was going through her first major surgery. Or they could wait until she is in a more calm state in the recovery room.

Now I am just glad that my daughter is home with me and Grant, and that she is healthy and that she is eating, and gaining weight and pooping, and being a newborn. She is the most perfect thing we have ever done, and we are so excited for her future.

Kaylee Hope. My Darling Girl.

Labor and Delivery.

September 22, 2010.

We were sitting in our room waiting for things to happen. I was put into an uncomfortable hospital gown, sat on a bed and Grant planted himself into a chair to wait. The doctors and nurses came in and out and in and out, doing various random duties. Changing fluid bags, checking vitals, etc. We were just happy that the end was truly within our grasp and that we were going to meet our daughter.

Just admitted

After a few hours of waiting for a medication called Cytotech to take effect it was decided that we would start Pitocin to speed up my delivery. Now, being a first time mom to be, I decided I would take the road less traveled (at least that is how it seems to me to be) and try for an all natural birth. I would forgo any kind of medication unless absolutely necessary. My mantra was that if I could still say the word "epidural" I wouldn't get it.

In all I was in an induced labor with no pain medication for a little over 30 hours. At about 3:00 pm on the 23rd of September I got the epidural. The pain was so incredibly bad for me that I was actually screaming with each contraction, which were coming back to back by the way. I caved, and I got the epidural.

Epidural smile.

Three hours later, after having been checked by several different doctors over the course of the day it was decided that I needed to think about having a cesarean section because I was just not progressing. I was going from 5 centimeters to 7 centimeters and then back down to 5. Also, they were a bit worried that Kaylee's umbilical cord was wrapped around her neck and she seemed to be in distress. I finally called it around 4:00 pm and gave the go ahead to have the c-section done.

It was the decision I had to make. I did not want to do it, and I tried to very hard to do it naturally. I tried very hard indeed. After waiting for four and a half hours or so I was prepped for surgery. My husband was placed in his biohazard/chemical warfare suit, and we were taken to the OR. After being pumped full of anesthetic my husband came to my side, held my hand and the doctors started their business.

The biohazard/hazmat suit.
At 8:42 pm on September 23, 2010 my daughter was born. An hour later I was in a recovery room wondering where the hell she was at and why I had not seen her yet...

The Pregnancy.

Grant and I found out we were expecting our first child in late January of 2010. Ecstatic as we were, it was a little of a surprise. We always knew we wanted children and had been trying off and on for few years. At the particular time I was being treated for an infection with antibiotics and I made the silly mistake of forgetting that birth control pills and antibiotics do not mix well. Naturally, the end result was a bean in the belly.

The first trimester was horrible. Morning sickness has now been renamed "all day sickness," because for me that is what it was, and that is how long it lasted; all damn day. I lost weight during the first trimester, which was okay according to the doctor. I had a lot of weight (and still do) to spare. However, other than the sickness and extreme fatigue, I was healthy. I took my vitamins and drank my water and milk and all that jazz. Things were going smoothly.

At 20 weeks, we had our first ultrasound. Nervous and shaky we held hands as the tech waved her magic wand around the jelly that covered my belly. We watched with rapt fascination as she measured all the parts of our fetus' body. Head, arms, legs, belly. We "oohed" and "aaahed" as we watched the alien growing inside me moved its arms and legs around.  We cried as we saw a heart fluttering away. Then we both said "Kaylee" when we were told "It's a girl." The second trimester was a good one for us.

We hit the 28 week mark and we found out that I had Gestational Diabetes. I tried hard to avoid it by eating right and exercising. Unfortunately, it seemed as though I did not do enough. I was given medication to take, not insulin thank goodness, but medication nonetheless. I was advised to poke my fingers four times daily to test blood sugar an hour after meals. I did all of this and was told that I probably would have a big baby.

I was miserable during the third trimester, but hey, what pregnant woman isn't? I had finally made it through, and the last few weeks were nerve wracking, and scary, and exciting all at the same time. I was given an induction date, if I hadn't gone into labor by September 21st on my own I would go into the hospital on September 22 to be induced as they didn't want her to get too horribly large.

Alas, despite all of the vacuuming, pizza eating, curb walking, and *ahem* special time with the husband, I did not go into labor on my own. I went into the hospital to be induced on the 22nd of September 2010 at 10 o'clock in the morning. We made our calls and told everyone to expect updates and we went for it. The labor and delivery is another story all together...

The Kaylee Monster!

Hooray! The introductory post!

My name is Jessica. I am the proud wife of Grant, and the happy mother of our daughter Kaylee. This is her story mostly.*

Mostly, this will be a weekly photo/blog update on my daughter and her progress as she is treated for her condition. Kaylee was born with a complete unilateral cleft lip and palate.

Here is what we look like. I always like seeing the faces to go along with the names of stories, it makes it easier to follow. Here, I offer the same.

This is me, Jessica.

This is the Husband, Grant.

Our little bundle of joy, Kaylee Hope.

*See the next post for the first chapter of our story.