Friday, December 16, 2011

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.

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.


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

To be continued.....

Sunday, December 4, 2011

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 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. 
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.