While I now don't even notice his cleft, it is unfortunately more severe than we had anticipated. It's very wide on the left side and leaves him with very little hard and soft palate. This was a setback in the beginning but our little fighter has successfully overcome his first hurdle and become quite the little pig. He requires a special bottle (which conveniently cost about $40 a piece... already showing a taste for the finer things, I see...) but he has little to no trouble eating. Hughitt: 1, Cleft: 0.
Last week we had our very first visit with the craniofacial team who will be treating him over the course of his childhood and adolescense. Because he is so little and his needs really won't be determined until he starts talking/getting teeth/etc, this visit was much more of a meet-and-greet. Here's a quick round-up of the folks who will be playing an integral part in our lives over the next decade+:
- Plastic Surgeon: This one is pretty obvious. He will be responsible for the cosmetic reconstruction of Hughitt's face, gum line, and palate. Because we couldn't settle for just any old plastic surgeon, we chose one who also has degrees in dentistry and oral surgery (over achiever?). He'll coordinate with the other members of the team to determine the best timeline for Hughitt's surgeries.
- Orthodontist: We are so lucky to have access to one of the few orthodontists in the country qualified in cleft care and the use of the NAM device. The NAM device is sort of a cross between a retainer and headgear (better now than in 7th grade, right?) It will pull his palate and gum line together while reshaping his left nostril, which is flattened due to his wide cleft. If all goes as planned, the cleft will be significantly reduced by the NAM, ultimately making the reconstruction easier and more natural looking. He was fitted for the device at our team visit last week and will have it put in on Thursday. We will visit the orthodontist once a week to have the device adjusted and tightened. Each week she'll send updates to the plastic surgeon and together they will decide when he's made enough progress to have his lip repaired. The rough timeline is 12 weeks, but could be anywhere between 10 and 16. We'll just have to wait and see! It looks something like this, and will have to be taped to his face:
- Otolaryngologist: Who knows how to say that word anyways? This is the ENT (ear, nose, throat) doctor who will primarily be concerned with Hughitt's ears and hearing. Because children without palates can't equalize pressure in their ears (like when you swallow to make your ears pop on an airplane) they are susceptible to the build-up of fluid in their ear canal surrounding the eardrum. Not only can that cause painful ear infections, but left untreated can cause hearing and speech problems down the road. Imagine hearing everything like you are underwater - that is how a child with heavy fluid build-up will hear and develop speech. As a precaution, he will most likely have PE tubes inserted into his eardrums during his first surgery. (The same tubes Jack had put in, easy-peasy). I tried to find a good picture to share but upon searching Google image for "PE tubes" was immediately grossed out. Search at your own risk.
- Audiologist: This doctor will work closely with the ENT to ensure Hughitt's hearing develops properly and isn't affected by fluid build-up. He passed his first hearing test so we're off to a good start!
- Speech Pathologist: While it might seem silly for a newborn to be seen by a speech pathologist, these professionals are also suck/swallow experts. They will monitor Hughitt's eating habits and patterns to ensure he is working the right muscles and eating efficiently. She was very impressed by his suck/swallow/breathe pattern and didn't see any issues with his current eating technique. We'll have to reevaluate after each procedure/surgery, but so far so good! Unfortunately, about 80% of cleft children require speech therapy to overcome an impediment but are almost all overcome by early childhood.
- Oral Surgeon: This one we won't really see often until Hughitt starts to get his adult teeth around 8 years old. He'll work closely with the plastic surgeon and orthodontist to perfect his gum line and jaw. He'll likely need a bone graft to completely close the gap in his gum line so his adult teeth can come in properly. We've been given hope that by the time he needs this surgery, synthetic bone will be FDA approved (it's currently being tested) eliminating the need to harvest bone from his leg or ribcage. Medical science never ceases to amaze me!
So that's a wrap as far as his current medical team is concerned. We're extremely confident in each one of these individuals and know our son really is in the best hands.
I'll post another update next week once he's had his device put in and include some pictures. We'll be taking pictures at the orthodontist each week so it will be great to see the progress he makes from week to week.
Thank you all so much for your continued support and prayers! We are so appreciative and Hughitt is so blessed to have you all in his life!!
