While I was still humming Johnny Cash's 'Ring of Fire' a cascade of little miracles was set in motion. Starting with the supply of breast milk en route from two towns away, a Bishop's wife who dropped everything to sit with me, my mom getting in the car and making it in record time so Scrunch could have her own personal buddy, to my sister getting on the horn.
If it's all about who you know, it seems (for once) we're in the know. My sister called a friend who contacted someone, who then contacted me and within two days of his birth we were scheduled with the Cleft Palate Team at the University Children's Hospital. Before the end of the month and before even having the referral from his pediatrician he would see a surgeon. We would see an entire panel of professionals in August. They called us yesterday to tell us there had been a cancellation and we would see the panel today.
Five hours in a doctor's office and most of it was actually talking to doctors or other professionals- that's kind of a miracle in itself.
We have kind of played off Porkchop's palate as "no big deal" because after all it's "fixable." In the grand scheme of things that could possibly go wrong this is on the low end of the spectrum, but it was still kind of nice to sit with people who recognized that this isn't just a cosmetic issue that will be stapled up overnight. This is going to be a process and it's kind of a big deal.
He is getting state of the art medical care from everybody and their mother. That is and isn't such a great thing all the time. More than a few times I had to count in my head to prevent from yelling, "Quit poking, prodding, touching my baby!!!" I've had to step down from the position that if you make my baby cry I'll make you cry.
Here's the breakdown and the low down. Listed only in order of what I remember and not necessarily importance.
CNS/Feeding specialist- Weighed in at 10.5 lbs at 16 days. Her advice, "Keep doing what you're doing."
Administrative Assistant- I learned a long time ago with Scrunch that the admin assist should be your best friend. They put the phone calls through and make the appointments. This almost makes them as good as the boss.
Speech Pathologist- Soooo very helpful and informative. At this point we wait and see.
Dentist- Seen starting around 6mos to a year to establish good hygiene and preventative maintenance. We need to keep the baby teeth in as good a shape as possible to help maintain other bony structures.
Orthodontist- Kid will probably need braces around 8-10 and again at around 13-14. Hope Scrunch doesn't need them. He'll likely be missing a tooth so he'll get to be the cool kid who can take his fake tooth out and freak out the girls. Implants when he's an adult if the teeth are missing.
Pediatrician- He pees, poops, and eats. Gold star from him.
Social Worker- I do not have post partum depression. Informed her about LDSFS. She's also a Social Worker on the OB floor and in the NICU. Mostly talked adoption and home birth with her. Nice lady.
Audiologist- Another nice lady who was totally pro home birth. He failed his hearing screen. It doesn't necessarily mean he can't hear. Fluid behind the ear drum is not uncommon. He'll be scheduled for more testing. He might be the only person who likes Ani ALL the time just because he can't hear her bark ALL THE TIME!
Dr. S.- Dr. S. is the medical director and an otolaryngologist/facial plastic surgeon. After meeting and talking with us he decided to take Porkchop on as his patient switching with the other surgeon we were originally assigned. He is a perfect candidate for nasoalveolar molding (NAM). Basically this means weekly appointments to have the moldings fit. It is kind of a pain in the butt, but it provides the best results. He will probably have surgery in August or September to close the lip. Usually a surgery at 10-13 months to close the palate and one at 9-10 to close the gum. Other surgeries may be needed as he grows depending on speech involvement/ if he needs a nose job etc. He had his first mold taken today and we go back on Monday.
My message to Dr. S.- You must make one hell of a first impression because there are not many people I'd trust to do surgery on my baby. I don't even care if you have a surgeon's God complex, you get things done. When all is said and done you'll probably be forever on the Christmas list.
Geneticist- This is where things took a downturn. You wanna come in here and play investigator about what I may or may not have done to cause this in my baby? And get hysterical about what is a normal newborn rash? You made me feel like a crappy mom and I really don't appreciate that. Thanks but no thanks and buh-bye.
Nurse who taught me to tape- Pre surgical taping is exactly that. Squish his little face together and tape with steri strips to secure. It needs to remain in place as much as possible and I do it myself at home. I wasn't prepared for that. We'll talk more about that later. It interferes with me kissing on his fat cheeks. It sucks and I hate it. We'll do it because it's what's best and he'll need to be taped until his first surgery.
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