Paige's Palate Surgery in a Nutshell

The week started with our pre-op appt with our Plastic Surgeon and a recheck appointment with the ENT.  The ENT cleared Paige for surgery but said her right ear tube finally came out and he recommended a replacement.  So we geared up to have ear tube surgery that Friday and the palate repair surgery the following Monday.  Wham-bam... Get it done...was the plan.

Paige with Dr. Sundine the Man with the Magic Hands

Ear Tube surgery the Second time around.....

So heading into Paige's 2nd ear tube surgery and the 4th time we handed our baby over to be put under anesthesia.  We were pretty calm compared to the first time, which was Paige's first procedure at 2 months.  I think it helped knowing what to expect and to know this was nothing compared to what we would face the following Monday. Phil and I sat around eating our bagels, cracking jokes, playing with Paige and giving encouragement to the other nervous parents in the waiting room.  They schedule all the young babies early in the morning one right after the other, because the procedures are so quick.  We talked to two sets of parents and told them that it really was so fast and their little ones would be playing by this afternoon as if nothing had happened.  It felt nice to be the "old hands."  Instead of waking up pissed and hungry like the first time she groggily opened her eyes and said "ma-ma."  The nurse said that Paige was the sweetest little patient she had had in awhile.  And proudly I tell you, she told us you can tell when a baby is well loved and secure. Phil and I gave each other a high five.  It warmed my heart to lift her into my arms and cuddle her to my chest.  She felt so snuggly.  Paige really did bounce back quickly.  The procedure was successful and her ears seemed to be in working order again.  

Paige pre-op just before her ear tube replacement.

Paige on the way home from ear tube surgery

Palate Repair surgery is no piece of cake but something that you eat one bite at a time and get through...

Again we were blown away by the prayers and support we received from friends and family, through Facebook, my blog, the Babycenter Cleft Lip/Palate board, and our church.  Much of our family showed up to the hospital early that Monday morning to wait with us through the surgery.  Paige was in good spirits. Playing and being silly with her Uncle Grant, Grandma, Grammy & Poppy, Mama and Papa.  She was so sweet and funny.  We answered the nurses bazillion questions, spoke with the Anesthesiologist, then the surgeon dropped in and then it was time to pass her off again.  This time was not with the easy confidence we had the Friday before.  We were raw, tired and nervous.  Phil said a quick prayer over Paige, gave her a blessing and many kisses, and delivered her into the nurse's arms.

Playing and waiting...

You can see in this pic the way you can see the round inside of her lip on one side.  The surgeon planned to revise this small area.  I was nervous I  might have been nit-picking to agree to have this done because her lip has always looked so good. 

Daddy puts her hospital gown on

Mommy says good bye for now...

We go to the waiting room with a Paiger pager that beeps us back two hours later.

To distract me my sister prepped and brought a craft project she found pinned on one of my Pinterest Boards 

We folded felt circles and pinned them to the foam wreath

Almost done....and beep beep beep: Paige is ready

The first view of our baby post-surgery.  She had a quick hoarse croup-like inhale for a few hours that was kind of jarring. Nurse said its from the breathing tube, and crying when she came out of anesthesia.  Phil said it made her sound like a zombie. It was the hardest thing to hear and broke my heart a little.  I was happy to have her back in my arms.

She was only calm when being held....My sister and mother helped while I pumped . Here Paige tries glucose water as her first liquid.

In daddy's arms....the nurses loved her snuggle wraps which we brought ourselves.  They fit soooo much better than the hospital no-nos.

The following day she was doing so awesome.  She began playing and giving a few smiles.

This video shows Paige playing the day after surgery.  Wait for the end and she will melt your heart.

Paige captures her Grandpa's heart and snuggles in for a cozy nap.

Really wonder how she got herself in this position...

We call this her ET or Christmas toes....its her pulse O2 sensor that kept falling off and beeping loudly.

CHOC is an awesome hospital. The volunteers brought her a Christmas Build a Bear

Her mouth was very ouchie and her lip was swollen from the revision

The following evening she made the sign for food so we tried some peaches.  She did pretty well.  

Leaving and going home....

She ate the first day while on morphine but when they switched to Tylenol with codiene in the night and she refused to let anything near her mouth.  They kept us another night to be sure she would eat ok before sending us home.  After that decision was made I sent out a prayer request and within the hour she turned a corner. My husband started giving her tiny ice chips and she loved them and kept signing for more, then she signed for milk.  We think it helped numb her mouth enough. I was able to bend the nipple of her bottle and squirt the breastmilk into her mouth from the outside.  She drank 5.5 oz and then ate 1oz of pears.  We were able to leave the hospital the next morning and were home by noon.  She was doing so well that we decided to give her plain tylenol in hopes it would help her poop: the codeine was making her constipated.  Well she wasn't ready for this transition and she was very fussy and miserable.  We gave her the Tylenol with codeine before putting her down for the night.  She slept on my chest and would wake up often in the night.  Almost like clockwork she would become very unhappy about 30 mins before we could give her more medicine.  She's back to refusing food but is taking her bottle on her own now.  She can hold the end of it with her hand bent at the end of her arm restraints and pushes it against her bottom lip like before.  Everyday seems a little better.  

We loved our CHOC nurse Paula

On our way home from the hospital.

Paige eating ice from daddy....

Paige with her therapy dog, Django.  You can barely see him, but she's holding onto and stroking his ear with her left hand. She was crying and screaming when she felt Django's fur and it immediately calmed her down.

Warning...Warning....Warning

Oh and here is a view of Paige's new palate for those not faint at heart......  The yellowish areas are the raw areas that are now healing and filling in.

Before:

After:

And since I didn't want to end on that note, here is one more:

To be continued.....

How do they repair a cleft palate?

When the roof of the mouth doesn't grow together properly, the condition is called a cleft palate. To repair it, the surgeon will make an incision along both sides of the cleft.

Tissue is drawn together from both sides of the cleft to rebuild the roof of the mouth.

Many people have been asking what is involved in fixing a cleft palate.    I found these diagrams to be the most helpful when trying to understand what happens during the surgeries. They are from this site: WFU Cleft Lip and Palate Repair  

To see what Paige's Cleft is like, why they occur and her personal treatment timeline click here: Paige's Cleft Journey

Cleft Palate Surgery

In some children, a cleft palate may involve only a tiny portion at the back of the roof of the mouth; for others, it can mean a complete separation that extends from front to back. Just as in cleft lip, cleft palate may appear on one or both sides of the upper mouth. However, repairing a cleft palate involves more extensive surgery and is usually done when the child is nine to 18 months old, so the baby is bigger and better able to tolerate surgery. 

Paige's cleft lip was considered incomplete because it did not extend into her nostril all the way and was only on the right side; but her palate is considered to be somewhat wide and affects both sides of her mouth, involving the soft and hard palate. You can also see that there is another submucous layer of her palate closer to her sinuses that is also clefted, more on the right side than the left. That is why food come out of her right nostril. 

Currently her skin is so clefted down the middle she does not have a visible Uvula. The doctor said he will try to make one but often, as the tissue heals, it just pulls up again and it won't be as visible as a natural one would be. Speech therapy will be a part of her life 6 weeks after surgery. Her roof will get tough and the bones may even grow a little closer together but it will never be as hard as someone's palate that is not clefted. It should be completely functional though. Holes called fissures can open back up, but are very rare. These usually close on their own but may require future surgery to re-close. Our doc says his fissure rate is VERY low. And that's another reason why we chose him.      

 

To repair a cleft palate, the surgeon will make an incision on both sides of the separation, moving tissue from each side of the cleft to the center or midline of the roof of the mouth. (See diagrams above right)This rebuilds the palate, joining muscle together and providing enough length in the palate so the child can eat and learn to speak properly.

The doctor will close both layers. He said that the incisions left behind will remain raw and open and the open raw areas will fill in on their own like wisdom teeth holes. I remember this when I had mine out.

Recovering From Cleft Palate Surgery

For a day or two, your child will probably feel some soreness and pain, which is easily controlled by medication. During this period, your child will not eat or drink as much as usual -- so an intravenous line will be used to maintain fluid levels. Elbow restraints may be used to prevent your baby from rubbing the repaired area. Your doctor will advise you on how to feed your child during the first few weeks after surgery. It's crucial that you follow your doctor's advice on feeding to allow the palate to heal properly.

Paige's Surgery will be in the Morning on Dec. 12th and we will be at the hospital for 2-3 days depending on how well she is eating. The doctor said it is important for her to be on the IV fluids so that she does not get dehydrated while not eating much; as soon as she is eating ok he wants to send us home because he thinks kids thrive better in their own home than in a hospital. His post op instructions seem a little stricter than some. She is supposed to wear her arm restraints for 3 weeks and eat only pureed baby food for 6 weeks. That means no rice puffs, cheerios, bits of apple, banana, cooked brown rice etc....she hasn't been a fan of regular baby food lately so this will be interesting. Maybe I will puree some avocado and add some whole yogurt.  Most likely birthday cake (Jan. 2) will not make the list of ok food for palate surgery recovery....so we are thinking a big pile of whip cream to get those classic first birthday pics.

Children with a cleft palate are particularly prone to ear infections because the cleft can interfere with the function of the middle ear. To permit proper drainage and air circulation, the ear-nose-and-throat surgeon on the Cleft Palate Team may recommend that a small plastic ventilation tube be inserted in the eardrum. This relatively minor operation may be done later or at the time of the cleft repair. In addition, surgery may be recommended by your plastic surgeon when your child is older to refine the shape and function of the lip, nose, gums, and palate.

This site has some info about cleft occurrence statistics and a great anatomy of the inner ear and how a cleft palate affects hearing and speech. 

http://www.leap-foundation.org/cleft-lip-and-palate-information/

Paige had her first set of eartubes at two months. She is getting over a month long ear infection and the ENT is watching her tube on the right because it is about to fall out and isn't working properly. This is why her palate surgery was postponed another month and pushed into December near Christmas. We may have another ear tube surgery in the near future.  See the blog posts about her previous ear tube surgery: Ear Tube Posts

Perhaps most important, keep in mind that surgery to repair a cleft lip or palate is only the beginning of the process. Family support is critical for your child. Love and understanding will help him or her grow up with a sense of self-esteem that extends beyond the physical defect.

And this is why we are so appreciative of all the support, love and prayers our loved-ones continuously send our way!

Here are a few more diagrams of palate surgeries if you are having trouble visualizing.

Our doctor said the diagram below is closest to what he does and it show that there are several layers that need to be sewn.  He looked at the diagrams above and said sewing the flaps to that small point in the middle is a week point and could lead to fissure.  He also said that there will be a small hole behind Paige's gums where the notch in the bone is and for some kiddos who have a complete cleft in their gumline up to their nose, until they get a bone graft about 8 or 9 years old.  So some liquid may come out her nose a little for years to come.

Another technique that they do where they sew the tissue flaps together in a zig-zag but our doctor doesn't do this technique for the palate but uses it for submucous clefts only.    

Here are the diagrams of a lip repair surgery as well. Paige's scar follows this pattern almost exactly but on the right side.

A cleft lip is a separation of the upper lip that can extend into the nose.

To repair a cleft lip, the surgeon will first make an incision on each side of the cleft from the lip to the nostril.

The cleft lip is then drawn together and stitched to create a normal "cupid's bow" shape to the upper lip.

The scar left after surgery will gradually fade with time.

Paige's Palate Surgery December 12

We psyched ourselves up to have her palate repair surgery on Nov. 18th only to have it canceled the day before because the ENT and Plastic Surgeon made the call that her ears were too infected.  They were draining a lot of yucky stuff and fluid was building behind her right ear drum, where her ear tube has been working its way out.  I know there are a lot of people who have dealt with or may have to deal with tubes for your cleft baby...they are common and so many kiddos go through it but this is what we have learned:

1. The surgery is good practice for the big cleft surgeries upcoming, if they don't plan to do it during the cleft surgery.
2. You will feel stress about not feeding your little one 6-8 hours before but you all with get through it.
3. They work! Paige failed all newborn hearing tests before and passed after.
4. They may not last the 1-3 years they say they would...Paige's right one is working its way out at 10 months.  She woke up with a lot of blood coming out...all over sheet, her face, and my husband. Which can be very scary if you don't know where it is coming from.  Both ER and ENT was prefectly relaxed about the amount of blood. But as parents we weren't!
5. Sometimes an ear infection isn't bacterial or viral.  After two kinds of ear drops and a round of oral antibiotics....they cultured her ears and discovered a fungal/yeast infection in them. 

Ok so NEW SURGERY date will be December 12th.   

Here we go again...gearing up for her surgery to fix her palate.  We will keep you updated about her healing and any must know advice for others who may be going through this too.  I'm a little bummed about the new date because she will be wearing arm restraints for Christmas and the doctor said puree food only for 6 weeks which means NO birthday cake on her 1st birthday January 2.

On my list so far:

• Snuggle Wraps...I got them for Paige's first surgery in small but at 3 month she was too tiny and they came all the way to her finger tips.  We used them the night her ear was bleeding to keep her hand out of it at 10 months and they fit perfectly. They are so much cuter/more comfortable and less bulky than the hospital No-no's they provided.  Not happy she had to use them already but glad to get the trial run.  She was able to crawl and pull up with them;  Just not able to put things to her mouth which makes sense but frustrating for her. http://www.snugglewraps.com/

How will she survive not feeding herself!

•    

Cruising with Paige's Peeps at the CHOC Walk

Paige's palate surgery has been scheduled at CHOC November 18th...but in the mean time... 

So far my mother, a friend and I will be doing the CHOC Walk through the Park this Sunday.  It is a 5K walk that raises money for the Children's Hospital where Paige has her surgeries and works with their Craniofacial Team.  Our team is called Paige's Peeps to represent all those who have supported us through this time.  We are walking for Paige's biggest fans who have prayed, offered emotional and even financial support for Paige's surgeries.  I am very excited to participate in such a special event to bring awareness to the awesome work CHOC provides to so many little ones.  It's just a bonus that we get to troll through Disneyland with characters encouraging us along the route. 


In our time visiting and staying in the hospital I have seen other children who are sick or have severe medical issues and have been grateful often that what Paige needs medical care for is something that can be fixed and she will be able to live a very normal life.  I once sat in the hospital lobby when they called a code and requested med staff to the helicopter pad and all I could do is sit and pray for whatever child was coming their way.  This is the hospital in our region where children are rushed to for anything major.  We were told that if Paige was born with any other serious issues she would have been air lifted here. 
 
Here are the links for anyone who wants to join our team or give a donation:


Team Paige's Peeps support page


My personal CHOC Walk page

God Made Appointments

Ok, so this is a post that may not have a ton of pictures (I love pictures) but it is a story that I really want to share and I hope you all take the time to read. 

Have you ever had that experience that you know could only have been created by God's plan? You may not know why but somehow you just know it is connected to what you are going through and somehow you were meant to be in that place at that time meeting that person, saying or hearing those words, etc.... 

Well I have wanted to write a post for awhile to tell you all how God touched us so often in unexplainable ways through the process of having a child with a cleft. We had so many experiences like this that I hardly know where to begin. I will begin at our 20 week ultrasound, which was not the day we discovered Paige's cleft but the day we learned our baby was a beautiful healthy girl. We really did leave that appointment  elated with a beautiful profile ultrasound picture in hand, but with the knowledge we would return to try a see her face straight on which she insisted on hiding in the placenta. To me this day was so necessary. God knew we needed to get to know our little girl first because her cleft was not who she was. We had two weeks to celebrate her healthy heart, brain, kidneys, hands and feet.

In the following week my next 'God set appointment' called me up out of a deep sleep. My sister said "Come play with us at Chuck E. Cheese. We are meeting a few friends there and the girls would love to see you." I rolled my pregnant self out of bed and showed up. A few minutes after I got there a woman came in with two adorable children. One just over a year in her arms had beautiful full lips, which I noticed first and then I saw two scarred lines under his nose. Somewhere in the back of my mind I knew we had the appointment to clear any craniofacial diagnosis coming up and I seemed to find this interesting. I asked my sister if he had had a cleft lip and she said "yes." I even told her the appointment we had to go to was to rule something like that out, but we had absolutely no reason to think we would find anything.  Hmmm...I can't remember the last time I saw someone with a cleft lip scar but here at this time I see this little boy. I think to myself of the time in my senior year of college when I watched a TV show that showed three reconstructive surgeries for children....one being a cleft repair and another being a little boy born with no ear. The doctor, who was an artist in his own time, sculpted an ear from cartilage. I told my dad that day that I wanted to be a plastic surgeon for children born with deformities. I even asked "if medical school would take a straight "A" Art major instead of a pre-med degree." This might have been the first point on this God-led journey that I could connect the dots to this day nine years later looking at this little boy in front of me. Soon after Paige's diagnosis my sister made it possible to sit down with that mother. She was so helpful and really gave me good advice and resources. One thing I learned...picking a good plastic surgeon is important and insurance coverage isn't a given. Things I had never had to think about before. 

The day we went in to check her face two weeks later and saw the deep shadow under her nose on the screen....we were stunned, punched in the stomach. I was scared and worried for so many reasons. Immediately we called our former and current priests and were met with another appointment by God. Each one had a child born into this world as wonderful, beautiful children with disabilities. One with Fragile X which is a form of mental retardation on the Autism spectrum and the other had Spina Bifida and had to undergo surgeries and a lot to overcome in life. Both these fathers had a real grasp on what the news, "your child has something wrong" could feel like. In another way it gave us a chance to put it into perspective. For all we knew Paige was healthy and a "normal" (What does that word mean anyway?) child that would undergo surgeries to fix her cleft. As many times as people say "they do amazing work these days" and "its hardly a big deal," "she'll never even remember"....or "you won't even be able to tell".....I have to say not one of these things ever made me feel better.....most of the time I didn't believe them......and it still was something we were going through and its not always easy and who wants to see their child in pain from surgery, discomfort from massage treatment or maybe even teased for looking or sounding different. BUT the two people who really could relate....saying they are sorry...that they understand and could clearly help us see that so many things could be worse, were the first two people we turned to that day. One of the Priests said "Celebrate."...."Celebrate this pregnancy, this child...don't wait for things to be 100% perfect to celebrate or you might never get to and miss so much." 

The stories of knowing someone with a cleft, knowing someone who works for Children's Hospital of Orange County's Craniofacial team, or knowing a surgeon who does this kind of work flooded in. We were not alone. My dad's friend in his cycling club and his wife are really involved in Operations of Hope, an organization who does cleft repairs in foreign countries; another cycling buddy is a dental surgeon on the CHOC Craniofacial team; One of my long time church friend's brother is a CHOC charge nurse and another one I grew up with just completed her schooling to be a Speech Therapist and had a lot of encouragement; another high school friend knew the Speech Therapist that would be at our evaluation appointment and she knew we were coming; the Audiologist on our panel eval ended up being a parishioner at our church. Our ENT is a neighbor of another parishioner, our neighbor works in our pediatrician's office, our pediatrician was recommended to us at least three separate times including by the head of the Crainiofacial team. My mom's scrapbooking customer has a teenage son who has undergone cleft repair and treatment through CHOC and she is involved in parent support there. Another friend from our church has a brother who goes on cleft surgery missions in other countries. My mother knew women who were lactation consultants, with experience of babies with clefts, who were ready to help and they even knew the perinatalogist and the neonatalogist that would be at Paige's birth if necessary. Even Paige's 84 year old great-grandma has been giving to Smile Train for 15 years and was very understanding. We discovered that we were surrounded by support and encouragement at every angle.

Once Paige was born we went to our panel evaluation and met a geneticist, ENT, audiologist, speech therapist, orthodontist, plastic surgeon, and social worker...and left CHOC after dark exhausted, but encouraged and feeling well taken care of. We immediately went to take Phil's grandma to dinner at Claim Jumper because she is in the area. The booths have tall backs so you don't really see the other patrons around you. All of a sudden a little boy under two pops out and stands in front of our table. He looks Phil dead straight in the eyes and smiles. Phil points at him and then points at his own mouth and asks, "Is it?" And I nod...yes he has had a cleft repair. Phil leans around to the other table and boldly says "Hi...our daughter has a cleft lip too!" The family was thrilled and all zillion of them popped around to look at our one month old with the unrepaired cleft lip and palate. They cooed and awed over the newborn and told us all about their experience with CHOC, surgeons and going through both the lip/nose and palate surgeries already. They didn't have insurance and ended up getting a very inexperienced surgeon who didn't actually do the best job. He already needs to have another surgery to fix the first one. They had his second surgery donated by the Shriner's Children's Hospital. It made us grateful to have wonderful insurance and pleased that we could get coverage for the best children's craniofacial plastic surgeon in Orange County. Meeting this child and his family was such amazing timing. We literally had just left the hospital and very much had Paige's treatment on our minds. All I could think was that was a "God Thing." We were part of a community now of Cleft families. We could look each other in the eye and marvel at our wonderful children and share stories and experience.

I found this to be even more true on the Cleft Lip/Cleft Palate support board on Babycenter.com. I got so much support and advice. I quickly felt like I was an expert on a subject I never knew would consume my life, fill my dreams and enter my conversation on a daily basis. I entered the group new, concerned, feelings of guilt and shame at some points. These women I didn't even know opened up....let me feel sad, encouraged me and pointed me in the direction I needed to go. I saw pictures of amazing, beautiful wide smiles, and children with repairs who were loved and adored. When someone came into the group with a new diagnosis and similar feelings we all could rally around them and tell them it will get easier. It has been an incredible experience. I've gotten to know some of these other moms and love seeing pictures of their little ones as they grow and are there with them in thoughts and prayers as each one faces the different stages in this process... thoughts leading up to surgeries, new challenges post surgery and celebration of recovery and plans to get back to normal everyday lives.

Six days after Paige was born my husband was ordained to the Priesthood in the Episcopal Church. I wanted to be there so much and was determined despite of recovering from a C-section and having a tiny newborn.  I made it through the hour car ride and two hour service. I was taking her into public, I kept her close and wore her in a wrap against my body and a blanket over her little face to protect her from germs. We were able to witness this special time and when people asked I said, "I was doing great." But immediately following I became exhausted and my muscles around the stitches hurt so much and I crashed hard. I feel like I had the perfect amount of energy to be there and I was meant to be. I didn't feel much pain at the time... And that is when God made me another very special appointment.  A necessary one for my healing and processing of having a cleft baby... On my way home my mom pulled over because Paige was crying inconsolably. We stopped at a Starbucks to take a break. I waddled in carrying my precious new baby. I was still at that stage where I was super conscious about what people thought of her cleft. All I was doing was hiding my face in her's and staring at her while my Mom ordered. All of a sudden I heard a man's voice say, "Does she have a cleft lip?" And I looked up a little taken back because I hadn't faced any public questions yet. The voice came from a young man behind the counter, who very clearly had a scar on his lip and a slightly pulled nose. I said, "yes she does." He then told me he had had 9 surgeries. Most he could not remember but he remembered the one from his bone graft at age 9 and he actually had one coming up soon to widen his jaw. He told me this happens sometimes to guys who's "manly" structure doesn't grow as it should to accommodate a nice square jaw. He seemed like a nice young man and very well adjusted with his scar and his story. 

It really touches me each time I meet someone who has experienced all of this. It is a special community. Now I see people all the time in public, children and adults with cleft scars. A dad at the pizza place with a left unilateral scar, a girl at the rodeo with a bilateral repair, a woman working at the dressing room of Target with a nose and lip repair from long ago. A small child with her still pink scar, swinging from the hands of her parents and even a one month old with an unrepaired isolated cleft lip who can actually breastfeed. This is our community, one that we would not notice much, never know, care for so directly and now be there for, if God hadn't reached out and marked Paige as his special child. A child that would know many challenges but also know an incredible amount of love. People say she shines....that she is amazing, beautiful, happy, funny, and bright. She is all these things and not just because I am her mother, and I am not saying it is because she has a cleft but because God made her, loves her and gave her to us to make a huge impact on this Earth. I believe she will continue to do that everyday of her life. She is a strong and determined little girl with a lot of joy in her heart already.