Andy got his tubes yesterday, it was so short I couldnt believe it was over! He did great, and now he can hear EVERYTHING! He's so cute, he thinks the strangest things are funny now.
Of course, sleep was HORRIBLE last night, dont know if it was becasue of the extra hearing or the gas from anesthesia. Regardless, we are wiped. And Katie has a cold so she was up for the party last night too.
Thanks for all the thoughts and prayers, one more surgery down!
Karen

Ok, I lied. Actually we have been so busy that I didnt have time to update everyone. The tubes are on Monday the 18th. It worked better with both Jeff and my schedule.
Other updates...the insurance company continues to be a thorn in my side. They think a man who does boob jobs is appropriate to fix my son's face. So frustrating!
Also...we lost our sitter (again!) looking for someone to start after the holidays! Finding daycare here is a challenge.
Finally...FEMA determined our house is in a flood zone, so we are fighting with that!
Life has been crazy lately. Sorry for the lack of updates....
We travel next week to visit family for the holidays...looking forward to the family but not the plane ride!
Will try to post pictures of Santa later!
Karen

The ENT finally called to get a surgery appt for Andy's tubes. Of course it is on the worst day possible...and the surgery center that is available is almost 2 hours away from my house! Can you believe it???!! And it could be longer depending on the time I have to be there...in rush hour it could be 3. Otherwise we have to wait until after the new year. I just feel like he has gone long enough wihtout hearing. If only the dang ENT office was not so slow. If we ever have to use someone again, I am NOT using this office. I guess it is officially scheduled for December 14th, next thursday. Can' t anything be easy?
Sorry to be so grumpy. Having one of those moments...
Karen

Finally posting pictures of Andy's baptism. Sorry so late but I know a few people wanted to see....
Katie just loved Nana and Papa's Kitty, and andy was a little angel at his baptism even though he was coming down with a cold. And the family picture is a great one, too bad it turned out too dark! And, of course, the unforgettable cards-mets game we went to when we were home....what a great time!

Katie found the joys of a Chuck E Cheese birthday party! It was Aiden's 5th birthday and he celebrated in style, complete with the ChuckeCheese Fanfare and a Dinasour birthday cake!
Katie is in love with the mouse. When we tried to get her picture with him, she refused to turn around and stop hugging him. Actually, we had to use a crowbar to detatch her from him.
Andy just hung out...my friend Lily was the designated Andy holder for much of the night...Thanks Lily!
No news on the tubes yet, I am going to pester the doctor's office again today. How slow can you be?
Karen

HAPPY THANKSGIVING!
We had a wonderful thanksgiving with our friends, the Aligs. It was so nice to spend a relaxing day with friends. Andy, the little stinker, spit his mouthpiece out at home before we left. Of course, we didn't realize until we got there that he was without it! Thankfully he drank his bottle fine, he just didn't want to eat his cereal. Must feel funny getting cereal up through the cleft if you aren't used to it! It took us two hours to find it once we got home...thankfully Daddy had the good eye...
Andy saw the ENT on Wednesday, and is a go for tubes. We just have to wait for his scheduler to call to get a date.
Andy and Katie just love the nightly baths together. They party and splash each other...too cute!
Someone's chirping! Must go...
Karen

Andy wants to be on the go! He gets up on hands and knees and just bounces along.... Nothing new here for Andy, just waiting for the ENT appt next week to see about the ears. He keeps threatening that he is going to get a tooth, but we still wait!

Katie is officially potty trained! Whoo Hoo! She hasnt had an accident in a week! And has even been dry a few nights last week. We are VERY excited about this!

Not much else, I will try to post the pictures from his baptism later. For some reason I am having problems with that! Darn computers....

Karen

Happy Halloween! Just sharing a few pictures! Not much new, Andy's ENT visit is scheduled the 22nd of November. So now we just wait....hohum...

Karen

We went for a hearing test that is recommended for cleft kids on Friday. It was a test that required sedation at the hospital. Andy's hearing at birth was normal. As of the test on friday, he has moderate hearing loss in both ears, he can not hear conversational speech. The audiologist told me he can only hear if you are talking directly in his ear.
Thankfully, she said that the nerve responsible for hearing was normal and she believes that if he gets tubes to relieve the fluid in his ears, he will regain all of his hearing. So now we are going to an ENT asap. Boy oh boy....more doctors appointments in downtown phoenix!
I was able to find out that his ear infection is gone, and he was a complete doll at the hospital. He is such a mellow guy...he hams it up with the doctors and nurses to the extreme!
We'll post on a surgery date when we get it...
Karen

Hi All!

We are back from our big adventure to St. Louis. We had a great time, got to hang out with all the family, go to playoff baseball games (GO CARDINALS) and catch and spread the family germs. Yup, we all got sick, and Andy and Katie now have resulting ear infections. I guess you pay when you party too much!

Just wanted to get a quick pic, I ll post more from our trip later!

Karen

Drumroll please....
Finally the nose tubes are out! He still has a sensitive nose and upper lip but thankfully I dont have to poke around to clean them as much now!

What a handsome boy! His little nose is definately lopsided-I am imagning we will need a revision to make it pretty. But the change truly is amazing considering where his nose was before the surgery!

Not much energy tonight, just wanted to get a picture posted for all of you Andy-addicts....
Karen

I just thought I'd be a proud mama and show off Andy (again!!). He sat for a few seconds alone today several times. Of course, the last time he fell forward right on his nose...and wasn't too happy with that!

Such a cutie pie!

Another rough week...Andy didnt sleep more than 2-3 hours at a spell after his shots. Unfortunately the waking

went long past the typical shot crud. We couldnt figure out why he was having such a tough time until Wed morning when I was cleaning his mouthpiece. He was bleeding inside his mouth from his palate. The obturator must have been poking him and was really uncomfortable. We got in to see the Dr yesterday and she said she couldnt see the problem in his mouth, but she shaved it down anyway. Last night he SLEPT! He only woke once in 12 hours!! Yeaaaah!

The lip is really pulling up, and I must say I have been deliquent at the scar massage. It has been a horrible week with no one getting sleep. And he freaks out when we do it so I really hate to touch it. But I am going to do much more this week...

He's decided that he wants to crawl. Last night I put him on his blanket and he ended up all the way across the room. HE rolls right over on his tummy and scoots all around.

Gotta go..pee pee in the potty time for Katie!

Karen

Things are getting back to normal! We went back to the plastic surgeon for our follow up visit on Wed. They gave him a new mouthpiece...he had outgrown the old one. And she suggested that we start massaging the lip because it is "pulling up" at the repair site at the lip. She said it's common due to the scar tissue.

Easier said than done...he HATES us touching the nose or his lip. One more thing we have to do that he hates. Fun fun!

The good news is that we get to have the nasal tubes out in 2 weeks...before our big adventure back to the midwest! Yeaaaah!

We went to his 4 month checkup yesterday. He passed with flying colors, and we started rice cereal. This is a picture of his first adventure with real food. He seemed to like it!

Today he has a fever from the shots he got yesterday. The kid cant catch a break. Oh well. Life isn't fair. At least he's napping well today.

That's all from the peanut gallery. Love, Karen

No Smiles Today...
Monday mornings are always rough...I couldn't get either of them to smile a bit! We are doing much better though, we got 2 out of 3 good nights of sleep this weekend.
We go back to the plastic surgeon for a follow up on Wed...and Andy should get a new obturator. The nose tubes have to stay in another 3 weeks as long as she thinks they look ok.
Thanks again for all the nice notes and words of encouragement..we appreciate it all!
Karen

Sorry I have been slow on the pictures...went back to work and the kids back to daycare this week. Things have been crazy. Plus I think Andy has a cold, and Katie threw up today at the sitter's. Boy when it rains it pours....

At least we still have good smiles. And Andy only woke twice last night, the best night we've had in 2 weeks!

Just keep swimming....

Karen

THANK YOU NANA!

What a week it was! Mommy couldnt have stayed sane without her! We cant wait to come see you in a month!

Love...Katie & Andy

(and if you come back, we promise Andy will sleep!)

HAPPY BIRTHDAY KATIE!!!
Officially not until tomorrow...that didn't stop us! Since Nana was here we had to party today! She had a GREAT day! Nemo was the theme upon Katie's request, and when you asked her what she wanted for her birthday...she said "Nemo Birthday Cake". She got a trike and rocking horse from mom and dad and a siwngset from Nana and Papa...
Andy had a wonderful afternoon, he was much more mellow (even without benadryl!!) His smile seems to improve by the day...a little over 24 hours till he can get his hands back! I think we might make it...although I was concerned at times...
Good night all, hoping for a quiet, uneventful evening....

Things got worse in the sleep department....we tried everything. Finally, yesterday we tried some benadryl to help him relax. He slept in3-4 hour spells last night, which is better than we have had in a few days.
He has thrush from the antibiotics...so now we are on another medicine. Yuk.
We have only 2 more days with the restraints....I believe the end is in sight.
Today is Katie's birthday....we are celebrating with a Nemo birthday party (per Katie's request)
We'll post pictures tomorrow!
Karen

Ok...kind of a smile....

For the past 24 hours, Andy decided that he was on a sleep strike. No more than an hour at a time, and not unless someone was holding me. Honestly, I know mom is ready to go home! This is no fun! We tried giving him tylenol with codeine but, in retrospect, that seemed to make it worse. Naps today have been better.... but we are all exhausted.

I think he' s just mad cause he cant chew on his hands. I can't wait for sunday when he gets cleared for chewing again!

His smile is so cute though....Karen

Andy....Kickin back watching some TV... :)
He had another rough night, but he finally had a BM! I think he feels much better today. We haven't had to give him any codeine yet...
I think he's also getting used to falling asleep without his hands in his mouth.
I can't stop staring at his little face. The pictures on this site just don't do him justice...The incision site looks great and his nose is just this cute little button. And from what other parents with cleft affected kids have told me, It will continue to get better and better as time passes.
We've noticed a dramatic improvement in the way he eats. He is able to seal his lips around the bottle and doesn't burp or spit up near as much...For that we are very grateful.

Hopefully things will continue in the right direction!

Karen

Today has had its ups and downs. He slept fairly well last night, waking 3 times. Of course mommy heard him first so she didn't get much sleep (again)...

Today he has been cranky, we have given him small doses of codine along with his tylenol to help him feel better. And it works well...

We have gotten lots of smiles today, and are very glad to see them. His nose and face are changing quickly now, so I will keep posting pictures.

Thanks for checking in! Karen

Here's the pictures I promised! He's eating "okay" today...I think he's holding out for 1am to do most of his eating....
Karen

NO T EXACTLY AS EXPECTED......

It was a rough night for mommy. I couldnt sleep. I was worried. I think I finally fell asleep the night before midnight. I had to wake at 2:30 to feed him, and then had to wake at 4:30 to get ready to go to the hospital. We registered at 6am and surgery was underway at 7:30am. Daddy held up like a champ, mommy cried (big surprise) and Andy was the superstar. He was in good spirits for having missed his morning bottle, making eyes and widesmiling at all the nurses and doctors.
The surgery went well, lasting 2 1/2 hours (1/2 hour longer than expected). We got to go right to recovery where he was waking. He looked AMAZING! We were told as soon as he would take a bottle, we could go home. He went through long phases of waking and crying, but never wanting to eat. We tried pain medication which just made him sleepier.
People came and went through recovery, and there we sat. Andy didn't want to eat, nor did he want to be put down. I sat for hours on a rocking chair with no cushion in a little corner. He was stuck to an IV so we couldn't walk him. After a few hours, our doctor came out of another surgery and reinforced to us that, yes, we did need him to eat before we left. They did switch him from saline IV to a sugar IV to see if it would perk him up....
Ever seen that episode of Friends where Rachel was having a baby and she kept getting roomates in labor who would go home wiht babies and she just sat there for hours? That's what we felt like....on a very uncomfortable wooden rocker. I can now say I am officially certified as a recovery room person, I could teach discharge planning to anyone. I must have heard the speech 1o + times in a 8 hour period.
Finally, I had to get something to eat, so Jeff took over. When I came back, the entire recovery was empty except us...and Andy had eaten an ounce. (Gee, thanks little guy, do it for daddy!)
But the Doctor still didnt feel comfortable with us going home as he had been almost 24 hours with only an ounce. So we got admitted about 6pm that evening.
Of course, in true form....Andy ate 4 ounces shortly after we got our room. Little stinker...we could have gone home if he had done that an hour earlier. But Jeff went home and I had to stay as the Doctor had put on Andy's orders that she wanted to see consistent eating. One good feeding does not count as consistent according to the nurses.
Andy must have heard that and taken it as a challenge. He then ate another 12 ounces in the next 8 hours. Of course still only wanting to sleep on mommy's shoulder. Thankfully the recliner had some padding for my behind, but I needed sleep.
Between Andy not wanting to be put down, the bells and whistles of the hospital, them taking vitals, shift changes....I didnt get more than 30 minutes of sleep before 3:30 am where I told them to give him some good meds so he could sleep. And I asked the nurses to hold him for me as I was getting shaky and queasy...and bitchy. I finally got a few hours of continuous sleep and Andy slept in his own bed.
We were discharged this morning at 9am. Andy looks great, however the swelling has really changed how his face looks compared to right after surgery. And he doesn't look like my baby. Thankfully he has that red curl on the top of his head that is unmistakable Andy. Otherwise I would think I came home with the wrong baby!
Thanks for all the thoughts and prayers. We needed every one of them....Ill post pictures later!
Karen

It's the day before surgery! Mom is in town so we decided to go get professional pictures done...crazy but worth it! It was a fun morning...Katie got to build a bear and we shopped at gymboree..(bad!)

I am just trying to stay busy so I don't think about tomorrow. There will be plenty of time to worry during surgery tomorrow. Not too much else...

Thanks for checking in! Karen

1 week to go!

Andy joined our family May 16th. We were blessed with a healthy baby boy! We found out he had cleft lip and palate on an ultrasound 3 weeks prior, so we were "somewhat prepared". Although we were quite worried about him eating, he took to the Habermann bottle well and hasn't looked back!

We started going to the plastic surgeon before he was a week old. The doctor recommended that we tape his lip to help it stretch into place and recommended that we use an obturator. The obturator is a retainer like piece of plastic that helps his palate and gum grow together naturally. We keep it in place with denture adhesive!

The changes we have seen with the conservative managment have been dramatic..just look at the pictures! It has been a fun and challenging 3 months and is scheduled for his lip and nose surgery next friday, September 1st. We are both nervous and excited! Here are some of his pictures...
1. Andy 1 day old
2. Our family
3. Andy 3 weeks old
4. Andy 7 weeks old
5. Andy 12 weeks old without mouthpiece or taping!
We appreciate all the prayers and good thoughts we can get...it feels so terrible to make this happy guy go through all this!
Thanks for checking in!
Karen, Jeff, Katie & Andy