It's that time of year again! This will be our 2nd annual Children's Hospital of Orange County Walk in the Park at Disneyland. Last year we completed the 5K walk in honor of our daughter Paige and the eventful year we were then in the middle of. We were only a month or so away from her next major surgery to fix her palate. Her nose and lip were fixed at 3 months and her palate at 11 months at the main CHOC facility in Orange. She also had two ear tube surgeries at 2 months and again at 11 months through CHOC, Mission Viejo. Like so many families and children in Southern California, we hold CHOC very near and dear to our hearts.
It's a special place with Children in mind, that is for sure. It goes beyond fun colors and waiting room toys. The care is truly the best. Children are flown in from all over the county for any acute emergency needs and when we were told our daughter would have a cleft, there was so much comfort in knowing we had access to the very best care. The Craniofacial Team is very amazing and experienced. They guided us through the end of my pregnancy, the first year of care and continue to be in our lives probably until Paige turns 18.
When you enter the Hospital you will see signs of its close relationship with Disney. Disneyland is only a few miles away and characters and special events like the CHOC Walk help bring families together and cheer up small children going through amazingly difficult things adding a little more happiness in their lives. When we stayed overnight for both of Paige's major surgeries we saw toys, movies and books to entertain littles and even adults who have to stay. Children were often taken to tests or for a ride around their floor in red wagons. A sweet black and white cocker spaniel, named Buddy, visited the rooms. Volunteers came into see if there is anything to make our stay more comfortable and since we were there a few weeks before Christmas, Paige even got her own build a bear as a gift.
These are some of the amazing things that help to cheer up the place. But one thing I did notice in the wee hours of the night while holding my child, connected to machines, smelling like Beta-dine, and sedated, sometimes in pain and hoping she will eat more or act more like herself soon....we were in a hospital. A place that so many children come in with way worse conditions than my daughter. A place where little ones sometimes don't go home. And this is when I am grateful for the amazing care and medical staff that provides for these children and tries to accommodate the families. I want everyone to have access to this care. And through events like this Walk and donations from people like my friends, family and people like you reading this, they can offer care to all. The Walk is coming up very shortly. We have one week to collect donations and I am asking for a final goal of $100 more, bringing my total to $555. Please help me make this goal...with $5, $10, $20 or more. It is greatly appreciated by so many.
So I might have used my daughter to inspire donations. I thought it would be fun to get people involved by making a short term goal to raise $100 in 24 hours. If we reached that goal we would take Paige out for a Special Hot Fudge Sunday to celebrate. She was so happy!! It really blew her mind that something to yummy existed in this world. And I hope those who contributed to make this happen enjoyed seeing her so incredibly excited! Thanks guys,
This is Paige and I at the CHOC Walk last year. Ever since she was born we have made efforts to wear her in a baby carrier to keep her close and confident. She loves it! And so do we. Last year I wore her during the walk. She got to experience everything from up above and stay close to mommy, while we moved easily through the crowds of people. This year with my mommy group and friends I have met in the So-Cal Babywearers group on Facebook, I am leading a team of 10 adults, so far, plus babies and kiddos for the Walk. Together we have raised almost $1000 for CHOC! You can join our team if you'd like or donate to one of the members who needs to raise a min. of $50 each.
Walk is Oct. 14th, 2012.
I have had fun designing a Team tshirt to inspire our team and share with others who we are and why we Walk. It was a great experience last year seeing all the shirts from teams walking for so many different reason. So many stories to tell.
I started with a basic idea and one of our local moms in the So-Cal group made our babywearing logo for our shirts really come to life, even adding the perfect touch of the Mickey ears to the sweet little baby.
This is our group taking over Disneyland at one of our playdates. We have so much fun together. I am glad I get to share this experience with so many of them. Many have really risen to the occasion and come out to support our local Children's Hospital by walking and raising donations of their own!
It was that time of year again. March came around and we went to CHOC to meet with our team for Paige's annual panel review. We have come so far since the last one that was scheduled a few weeks before her lip and nose repair. We weren't expecting any surprises. Her lip and nose look great. Her palate is fistula (hole) free....She is happy and interactive. Meeting or exceeding most milestones. Since her palate repair she had jumped from 20% to 45% in weight due to more efficient sucking and the increased ability to eat solid food. The plastic surgeon even said the large notch in her gumline seemed to be closing a bit.
Paige drawing at the CHOC appointment
Daddy entertaining her to pass the time.
We see many specialists and doctors at the appt. The whole process takes 2.5 hours.
The tough times....
As parents of a child with a cleft there are quite a few challenging events and experiences that we face, from finding out, to feeding; finding a surgeon, to getting ourselves and our child through multiple surgeries. So as parents of a child with a repaired cleft, we assume our troubles should be much more trivial, yet they somehow can be just as trying to our systems and lives. Our biggest challenge recently, seems to be getting our Speech Therapy group approved by our new insurance as of January 1st. She was supposed to be seen 6 weeks post-op which would have been mid-January. The team agreed again she needs to be seen and evaluated for an early speech stimulation program and on going monitoring since she is missing a few normal consonance sounds and clearly early speech intervention helps children with clefts develop better speech and communication. Other than that she mimics many sounds, communicates with several words and signs and chatters in a conversational style.
When I discovered our insurance didn't cover any of the speech offices that work with our team, I searched for a provider that would be "in-network." My search concluded with finding one in a 25 mile radius. One! I called her and she said she didn't have experience working with children with clefts and I should continue to persue treatment with someone who did and specifically one who worked closely with our team. So I applied to be granted network adequacy. And promptly got denied. Reason: The physician requested is not in-network and there are providers in-network we could see. Oh really? I checked again.....ONE. So I resubmitted the referral request through the pediatrician who sent in more supporting charts and documents, and.......we got denied again for the same reason.
I requested a case manager who said "We are not denying her speech therapy, just denying coverage of the physician you have requested. And since it was already reconsidered and the decision was finalized it probably won't change." Me..."But you only have one person we can see and that therapist doesn't feel that she is adequate to see my daughter. How is my daughter supposed to get proper treatment?"......"Well there is only one more thing you can do. Have the requesting doctor call and talk to one of our medical directors, peer to peer, and have them explain further why she needs to see someone out-of-network." She also wanted me to fax the new notes and directives from our team panel review, having to do with her need for speech therapy with "RECONSIDERATION" in big caps.
In the meantime I received a $284 bill for the speech and audiology portion of our Team appointment. I assumed it was all billed through CHOC as one appointment. The specialists were provided to us. We didn't ask and they didn't tell us that they bill separately. We didn't receive a bill last year because our old insurance covered everything. My husband's work even switched to this new insurance because everyone was supposed to get better advocacy and would most likely not even notice a change on coverage.
So here we are about a week after I asked the head of our cleft team, the person I thought had the most weight and opinion about the matter, to call the insurance company directly. I skipped my pediatricians office this time, considering they really are the middle man in all this. And now it is the waiting game again. Please pray that this works because we are about at the end of the line. The next step would be paying out of pocket or going to the therapist they provide anyway hoping she can help somehow make sure our daughter doesn't struggle too much as she acquires language in this critical time. I have never been so discouraged by the medical process. Getting my breast pump required 10-15 phone calls but my stubbornness paid off and I got a good quality one for an entire year. I truly feel that people with less drive, or shyness, or maybe even a language or cultural barrier would just give up and not be able to fight for what their kids need. I am Paige's advocate and I will get her the best I can provide. So for those of you going through your own cleft journey, know that you will get through this no matter how frustrating the process or pain and discomfort you witness your little one go through. It all happens in mini bites and stages. Some hurdles bigger than others. Some mountains. And you will look at your perfect little child and know in your bones all of it will be worth it.
I honestly ask for prayers as we face the next few weeks
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:
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.
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.
It's a special place with Children in mind, that is for sure. It goes beyond fun colors and waiting room toys. The care is truly the best. Children are flown in from all over the county for any acute emergency needs and when we were told our daughter would have a cleft, there was so much comfort in knowing we had access to the very best care. The Craniofacial Team is very amazing and experienced. They guided us through the end of my pregnancy, the first year of care and continue to be in our lives probably until Paige turns 18. 
