Friday, January 28, 2011

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!

Monday, January 24, 2011

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.


Wednesday, January 19, 2011

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).

Tuesday, January 18, 2011

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.

Monday, January 17, 2011

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!

Saturday, January 8, 2011

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.