A February Update

I'm terrible at this!

Seriously! Writing a blog feels like it needs to be a full time gig. I've had a tab open to the blog for months with posts half written. A handful of photos that need editing. And a dozen potential blog topics swirling in my head.

The app on my smartphone allows me to write a sentence here and there. If I'm lucky, I can get a rough post written up that will later need a serious rewrite and spell-check (why is it so hard to type with just thumbs!).

I will try to get up some more informative post up soon!

Please check back!

Squished Face

Nasoalveolar Molding (NAM) is a lot of work. I can see where it might be hard for some people to do. Sometimes it felt like harsh treatment for my precious little newborn. But NAM will only make her surgery more successful and soon it became part of our daily routine.

Cast of the cleft

The NAM looked like a tiny little retainer with a little knob on the front that the rubber bands would hook on to.

They made of a mold of her face (which I talked about in the previous post) and from that created the NAM from acrylic.
Each week we returned to see the Craniofacial Dentist where he would make small adjustment to pulled the two sides of the cleft together.


The NAM would be held in with tape and rubber bands. We were given lots of supplies. At first, it looked really confusing but I got a hang of it really quick.

 We got orthodontic rubber band, Replicare Thin, and Steri-Strip tape.

They also supplied us with this crazy contraption that at first glance looked like a medieval torture device. All it was is a piece of wood with nails. It enabled you to stretch out the tiny orthodontic rubber bands so that the tape can be wrapped around. The strip would go around the rubber band and overlap at one end. Then another smaller strip would wrap around that end to reinforce it. I prefer to wrap with the adhesive facing up. I was trying to handle the adhesive as little as possible so that it wouldn't lose any of the tackiness.

I cut the Replicare Thin so that it created a little patch to protect the cheeks. After a couple weeks, I soon realized that the size I was cutting the patches to was too small. The first real sign that my baby was growing really fast.

After 8 weeks, I was starting to redo the taping almost every day because Aria started whipping her head back and forth and rubbing her cheeks on the bed, the sides of the car seat, the bouncer, or anything else her face could touch. The worse would be if I propped her up in the Boppy She would slide down and rub her face against the inside of the Boppy. Something about the curve of the Boppy and cheeks guaranteed that the Replicare would come off. Also have to mention that all this head motion rubbed the hair on the back of her head off. Now she has a pretty good bald spot.

 The first tape down was two strips on one rubber band. I started on the right cheek and would pull towards the left. The rubber band should be positioned over the cleft. I figured out that if i positioned the rubber band under her right nostril I would get the rubber band over the cleft after I pulled.

The other two tapes were hooked onto the knob on the NAM to help hold it in the mouth. It was a single strip attached to a rubber band for each side. I had to have more pull on the left side to aid in pulling the cleft together.

I learned to consistently have one side looped over the knob first. That way we always knew which side to take off first. The couple times I accidentally took off the wrong one it became a tangled mess.

And now we have a little squished face. After the first couple days we got so used to her face being squished that it was strange to see it with out tape. Her face looked really chubby when it wasn't tape.

The down fall of all the taping was that her cheeks got red, dry, and irritated. We would let her face "rest" for a few hours between taping and tried to soothe it with a little Aquaphor.

The NAM was worn for 13 weeks. The cleft started with an 11mm gap. Each week the gap closed by 1 to 1.5mm. When the cleft got to 5mm, a wire was added to help hold the nose up. A few weeks later the cleft lip repair surgery was scheduled.

In the end the NAM treatment was a success!

Molding

We were very excited to learn that Aria is a good candidate for a NAM...

Nasoalveolar molding (NAM) is a pre-surgical treatment used to improve the final results of surgical repair for cleft lip and cleft palate. Surgical repair alone cannot correct the multiple problems encountered with the deformities that result from clefts of the lip and palate.
The NAM process actually expands tissues prior to surgery. An acrylic orthopedic appliance is used by dentists to approximate the cleft and mold the nose, reducing the amount of surgical correction required during treatment (in the majority of cases, children only need one surgery as opposed to two surgeries under general anesthesia to repair cleft lip and palate). [http://www.chla.org/site/c.ipINKTOAJsG/b.4816661/k.BA38/Nasoalveolar_Molding_Program.htm#.Us2VirSKeSr]

A week after her birth, we had a consultation at Seattle Children's where we met with our Craniofacial team. We originally met with part of the team back in May when we first found out about the cleft. The team included a pediatrician, a nurse and a counselor. At the second meeting, we also got to meet with the plastic surgeon.

In a big blue chair ready to take some 3D pictures

We got a lot of information that day. Once again they talked about the cleft and how it forms. We were finally given a time frame for when the surgeries would take place. The lip would get repaired at around 6 months of age. The palate would be repaired some time between 9 to 12 months. Later down the road, there may be a nose revision at 5 to 6 yrs of age. And an orthodontist will definitely be needed. Another possible surgery could take place in early adolescent where bone will be taken from the hip to add structure to her gums.


A couple days later we returned to meet with the orthodontist that would be creating and overseeing the NAM device. First an impression was taken of her mouth. We were asked to leave the room during this.

Aria's impression. No wonder parents are not allowed.

We left a sleeping baby and returned to a sleeping baby. The doctor and nurses said she did great.
The NAM would take a week to make but during that time they wanted us to start with some taping. The taping will help pull the gap closer together. They gave us Dynacleft tape to start. It was easy to use. Stick on cheek, pull gap closer together, and stick to the other cheek. Once the tape was in place she looked so sad.

Dynacleft tape

There was a lot of information and new steps to her care that we were given. It was a bit overwhelming. We have a new baby. She's the second child. Now must manage two children. Our newborn has a cleft lip and palate and requires special care. A challenging road lays ahead.

Growing, Growing, Done

 The creation of life.

Just wanted to shared the progress of how Aria came to be.

Our little bean at 9 weeks

 It's incredible that humans start off this small and tiny. And crazier to think that this was the time her face was forming and when the cleft appeared.

12 weeks

A person appears. Everything was going well at this point. We left our first prenatal scan knowing that our baby had a strong heart beat and the doctor was 70% sure we were having a girl.

19 weeks

This was the scan that changed everything. It's shocking how clearly define the cleft is at this point. We had to speak to a genetics counselor about our options. It felt like dream. We were told that a cleft could be a sign of more abnormalities. More testing had to be done; so an amniocentesis was scheduled. That was a freaky experience. Trying to lie still while a doctor inserted a long needle into my belly while trying to not stab the baby. As we waited for the test results to come back, we had to discuss the possibility of termination. After a couple of weeks the test results came back normal. Besides the cleft we were having a perfectly healthy baby girl. For me, this resulted in another round of frustration of wanting to know what causes a cleft.

30 week

We went back in for a couple more ultrasounds. These were enjoyable as long as we walked out with no more bad news. With my past pregnancy we did not get anymore ultrasounds after the 20 week check up, so to be able to see more images of the baby growing and to continue seeing that strong heart beat was exciting.

34 weeks

The overall pregnancy was as normal as it can be. My health was good. The baby's health was good. I was eager to be done with this pregnancy but I think that stemmed from also having to take care of an active toddler.


 A few days before her due date, Aria decided she was done with the womb too and emerged. The birth went quick and easy. Now we were finally able to see how bad the cleft was. It's not the worst case but definitely more than we would like it to be. 

The diagnosis...

A unilateral cleft lip and palate.

Discovery

I've been so back and forth on the creation of this blog for a long time.  But I've finally decided to write it and to share our story with family, friends, and the world. I'm hoping this blog will be therapeutic for me and informative for others. 

It all started in May of 2013. We went in for our 20 week ultrasound excited to get confirmation on our baby's gender. We did not expect to walk out shocked with different news...our baby has a birth defect. The ultrasound showed a definite cleft in the lip and possible cleft in the palate. I've seen the photos from Operation Smile and knew the term but never thought it would be part of MY life.

A cleft is caused when the face does not completely fuse together at 6 to 8 weeks gestation. Cleft lip and/or palate occurs in about 1 in 700 births worldwide.

We some how hit one crazy lottery. Both our families have no history of birth defects. We are both healthy people. Our first child is amazingly healthy. We did not know where this would have come from. We tried to think back on our lives at the time. Was it stress? An illness? A plane trip? Something I ate? No one knows. There is no definite cause to a cleft.

The following weekend was spent in heavy research mode. We had to know everything about clefts. What causes it? How is it fixed? We read up on the surgery process. Looked at before and after pictures. We familiarized ourselves with the different repair techniques and the different degrees of clefts. We now know a lot more about clefts than we would like. This first year is going to be a tough road with more bumps along the way for the future. It's going to be a long journey...it's going to be an odyssey.