Paige's Surgery has been scheduled....

This Smile Available for a Limited Time only.....
Get it while you can!

 

Our days with our baby the way she came into this world are numbered.  I am nervous as a mother to have my daughter operated on and to see her in pain.  I can't imagine her mouth and her smile any other way.  I will miss her "wide" smile but I know she will still be our little girl with the bright blue eyes. 

Paige's lip and nose surgery is scheduled for April 4th, 2011 with Plastic Surgeon, Dr.  Sundine at Children's Hospital of Orange County, CHOC. He has been doing Cranio-facial surgeries such as these for 10 years and has done hundreds...He is very highly recommended by many people and professionals. http://www.drsundine.com/cleft_lip.asp

The surgery is scheduled and we are so grateful that the insurance just approved our choice of doctor.  Thank you for the prayers for the authorization to come through so easily.  Based on other's experiences we anticipated getting denied and fighting with multiple times of submitting the request to get the approval.  We got it on the first try! 


We appreciate all who have given us prayers and financial support. With this help we should be able to afford the first surgery and her previous ear tube surgery as well.  Thank you, thank you, thank you all!  

  

See Cleft Surgery Video - Click Here

Dr.  Sundine says the surgery will be about 2 1/2 hours under general IV anesthesia. We are scheduled for 11:00am which means we have to stop feeding her at 7:00am.  We will stay in the hospital for one night and she should be able to drink from her bottle right after, but if it is too uncomfortable we can feed her with a syringe.  

When she wakes up she with have sutures and stints in her nose to keep the nostrils open.  Her arms will be held straight with braces called, "No-No's" for 3 weeks, so she will not interfere with her sutures or nose stints.  The stints are also in place so that her nose will heal even and scar tissue will not pull it tight and make it lop-sided again.  She will have to wear them almost all the time for 6 months.  We will have to message her scar and pull on her lip everyday, once it starts to heal, so the scar tissue won't build up and pull it upward.  He told us most kiddos hate this but the results are worth it

Her sutures will be removed under general mask anesthesia on April 11th, 2011....so continued prayers over the next month or so would be greatly appreciated. Her palate will be fixed during a separate surgery around 10 months.  Revisions of the lip and nose will most likely be done when she has stopped growing in her late teens. She will be monitored for hearing and provided speech therapy as she grows.  She will also require a bone graft to her gumline around age 8 or 9 so her adult teeth have something to  anchor to. 

Cleft Palate Surgery Diagram

We have a long rode but the biggest part is right around the corner and we appreciate all the love and support we have received from you all. Please continue to pray for strength, wisdom and proper care of our sweet little girl.   

Announcing Paige's Baptism

Announcing the Baptism

 of 

Paige Hart DeVaul

Sunday, March 20th, 2011 

at

St. Margaret's Episcopal Church in San Juan Capistrano, CA

All friends & Family are welcome to join us for the 9:30am church service

It is very special that her very own daddy, Fr. Philip DeVaul, will be able to
celebrate her baptismal sacrament

"Your Daughter is here not by chance, 

but by God's choosing.

His hand formed her 

and made her the person she is.

He compares her to no one else-

she is one of a kind.

She will lack nothing that His grace can't give her.

He has allowed her to be here 

at this time in history

to fulfill His special purpose 

for this generation."

-Roy Lessin-

Blogger Buzz: Engage your audience with Follow by Email

Blogger Buzz: Engage your audience with Follow by Email

Now you can follow my blog by email....why didn't they think of this before? :)

Newborn Pictures by Melissa Munding

My friend, Melissa is a photographer and for years I have loved her newborn pictures she took of other friends' babies.  I couldn't wait to have her take pictures of Paige.  Here she is at 5 weeks old.  We wanted to capture her smile just the way God made her before her surgeries.  I am so happy with how they turned out.

Here is Paige's post from Melissa's blog: 

Paige – 5 weeks   

See her other beautiful photography @ www.melissamundingblog.com

PAIGE – 5 WEEKS                    

This bright eyed little beauty is Paige Hart.  She’s a stunning little thing with huge blue eyes and a head full of lovely dark hair.  Little Paige was born with a cleft lip & palate and her mommy and and daddy wanted to make sure they got some great photos of her just the way God brought her into this world.  She’ll be having a number of surgeries in her future but she’s pretty darn cute just as she is if you ask me.  I really love that they want to remember her the way God made her and even though the surgeries are necessary, they think their little girl is perfect…you can see it in their eyes.  It was a pleasure to meet you Paige!

The rule of 10 lbs and 10 weeks....

Paige weighed 10 lbs 10oz today!

When the nurse weighed her today he said 10 lbs 10 oz and my brain heard the same weight she was two weeks before, which was 9 lbs 10oz.....I thought she hadn't gained at all.  I was crushed.  I swore she was bigger.... she went from newborn diapers to size ones....outgrew some of her NB clothes and seemed like significantly more of a strain on my arms to hold.  He checked her chart and said....."No, she gained a pound!"  Now that is more like it!

That's one pound in two weeks and more than enough to be a healthy weight for anesthesia during her surgeries.  The rule for lip repair surgery for most children is that they must be at least 10 pounds and 10 weeks old.  For many cleft affected babies this is very difficult.  Their parents fret and worry about them eating enough to thrive and gain enough to have their surgeries.  We are so blessed that Paige is a good eater and my milk is nice and calorie rich.  She had a slow start and breastfeeding doesn't seem to be an option because she still doesn't have adequate suction, but she has started going to town on her bottles of breast milk.  

Her pediatrician says she is just right...making a nice curve in the 50th percentile.  Other than her ears and her cleft she is perfectly healthy in every way. 

Paige at Pediatricians office for 2 month check up :) 

and a vaccination :(

Ear Tube Surgery Next Week

Please pray for Paige and the doctors, as she undergoes Ear Tube surgery this Tuesday, March 8th at 7:00am.  

She has had fluid in her ears since birth and only hears about 80%.  Since she is at an important stage in acquiring language development, it is important to get the fluid drained as soon as possible.  Cleft children can have hearing problems due to how their sinus anatomy allows fluid into ear canals and prevents them from draining properly, leading to higher risk of multiple ear infections.  We want to prevent actual damage that can lead to hearing loss.


In the hospital they test all newborns' hearing within the first couple of days. They are able to hook an electrode to the baby's head and measure certain brain waves,  while they emit sounds into their ears.  These brain signals help them determine what they can hear.  Paige failed on the right side and passed on her left.  They said this is common for all newborns and scheduled a follow up two weeks later.  At that appointment she failed on her left side and passed on her right, so we had an idea that it wasn't actual hearing damage but probably just fluid.  We were then referred to an audiologist who did more in-depth diagnostic tests and determined that she did have fluid behind her eardrums on both ears. 

So the next step was to meet the Pediatric Ear Nose & Throat doctor at Mission and he referred her to have tubes put in as soon as possible.  He said to her Pat, Rat, Bat all sound the same and she is already acquiring language skills at this age. The original plan was to have her tubes put in when they did the lip surgery, so that she would only have to be put under anesthesia once.  Well she needs them sooner rather than later.  Great news is we were told the ENT doctor is one of the best.  We know that ear tubes are very common even for children without clefts, so we don't have to worry too much.  Please do pray for a wonderful outcome and the full restoration of Paige's hearing.

Wow...that's a lot of hair!

It's true, Paige was born with quite a head full of dark hair.  We're pretty sure she got it from me, because I had just as much, if not more.  It is fun to put bows, hats and flowers on her head....but sometimes I just like to show off the "do" that God gave her.  Here are some of our favorite hairy moments.


          Paige at birth...                                              Me at birth....

  

The nurse was so excited to wash a baby with hair....Paige loved the water....

Yes, we get it....she's got more than her daddy...

       

First Bath at home....gunna wash that hair since everyone kept petting it until is was slick and flat.

 All Nat-tur-ral and damp....

 A little help from a brush....

Some hair accessories...

Paige is Here!

Paige Hart DeVaul

Born January 2, 2011 @ 10:35am

8 lbs 10 oz & 20" long

Okay okay...she has been here for two months. But shouldn't my first blog since her birth be an announcement. I apologize that I have not kept up with this since her time on this earth, out of the womb....but as many of you know, it takes a little bit of time getting used to the whole parenting thing.  I hope to add to this blog more regularly in more bite sized portions...this first post will be a doozy, as we catch up a little on Paige's beginnings.  

Birth

I went into labor at 2am on 1/1/11 and was convinced that I would have a New Year baby...but after 32 hours of labor and very very slow progression, Paige was born via Cesarean on the morning of January 2, 2011.  Before I could see her....I heard everyone say, "Oh she has so much hair...now that's a good sized baby."  Phil got to see her come out and was right by her side as she was weighed, measured and assessed as healthy.  She was quickly wrapped up and put on my chest.  I held her with my own hands for minutes just looking into her big wide gray eyes. That is what I remember the most.  I had to remind myself to look at her lip.  It was so secondary to what was happening the moment I laid eyes on the most beautiful baby I had ever seen.  I was a mom....she was ours!  We had made this little being and were now entrusted to care for her.  

Most commonly asked questions...

How does she eat?

I was encouraged to try and breastfeed her right away but because we couldn't trust how much milk she was getting, due to her cleft, we had to bottle feed and supplement with formula for the first couple of days.  Phil and I had it down.  I would breastfeed her for five minutes and then hand her off to Phil while I pumped the rest and he fed her milk I had previously pumped and then finished up with formula until she was full.  

We started using the Pigeon nipple which is really wide with a cross cut that allows the milk to flow a little faster for her.  She drank so slow...we were excited when she drank 10ml in an hour.  We then tried the Medela Special Needs Feeder, which are special bottles that have long nipples that go far into her mouth and has a part of the bottle that allows you to squeeze milk into her mouth.  The only thing is this bottle costs over $25 a piece. Both of these bottles are specially made for babies with clefts but many babies are successful with regular bottles with cross cuts that you do yourself.  For cost reasons we decided to try this and settled for Dr. Brown's bottles.  It's nice to just use a bottle that looks like one any baby would have.  She can now get down 2-3oz in 30-60 min.  It only blurts out of her nose from time to time, and she really hates it when it happens.  She just looks at me with tears in her eyes, like "Why?" The feeding nurse at CHOC and her pediatrician are very pleased with her weight gain and are not concerned.  She was 9 lbs 10 oz two weeks ago.  They require her to be 10 lbs and 10 weeks in order to do her first surgery.  

Ultimately she does not have enough suction to breastfeed and therefore I am exclusively pumping.  I was very happy that I have enough milk to have a supply in the freezer and she does not need any formula.  It is a lot of work but I am happy to do it.  She is completely worth it.  As of today I have pumped more than 293 times and over 140 hours. Fun facts available because of an iphone app tracker.  As Phil likes to say..."we live in the future."    The nice part of bottle feeding is that I have the help of others to feed her, like Paige's wonderful daddy and even her little cousin, Lily!   

What is her Cleft like?

We were happily surprised that her lip was considered an incomplete cleft.  That means it does not go all the way through her nostril.  We were not able to tell this on the ultrasounds.  Her nostril is intact but a little flattened.  Her case should be a little easier to fix.  Her gum line is affected but it is also incomplete.  Which means there is a notch but it too does not go all the way into her nose.  Her soft and hard palate are completely clefted.  It looks like an open slit in the roof of her mouth and because of the separation her uvula is separated and appears to be missing.  The surgeon will probably sew it back together so it looks like she has one.  Her lip and nose will be fixed about 3-4 months and her palate will be at 9-12 months.  I hope to get a better picture of her palate soon and I will post it once I do.  You can always click on the "Paige's Cleft Journey" page to the right for updates on her surgeries and such.   

Our little girl...

In some ways its like her cleft isn't even there for us and truly is just a part of her, but in many ways it gives her personality and I think its cute.  I heard before that people miss their little ones' first smiles after surgery, and I am beginning to totally understand that.  Here she is at 5 weeks old giving her very first smiles. 

        

See her smiles in action...