{a cleft journey} Meeting with the cleft doctor

I have slipped back into that black abyss that took over my soul just two short months ago. I would like to admit that having the 4D ultrasounds done has lifted my spirits but after this morning I have been shot back down to ground zero looking for hope, somewhere. The phrases filling my head of people telling me, “it’s not that bad”, “I can barely tell” and “it’s just a surgery. . .everything will be fine” are like a stab in the heart because the true reality after our meeting this morning is wanting to believe it isn’t that bad, but it is. A lifetime of surgeries are ahead for our little boy, we will be with our doctor, granted we stay in San Diego this long but until Brayden in seventeen years old. The line up of surgeries and therapy is mind boggling and when Dr. Nelson turned to me after his thirty minute explanation of my son’s future and said, “you know, I just have to remind you that there’s nothing you two did to prevent this”. Thanks. Another shot to my heart and honestly I just wanted to bawl my f-ing eyes out because I was so overwhelmed and to top it off Payton was seconds away from sticking her finger in the electrical outlet while noming on my chapstick lid. Parent of the year here folks. Hearing all of the information we heard today wasn’t anything that we had not already read while doing research but instead it was a reality check. I think I was in la-la land telling myself, it’s only a 2 mm  tear (as of now) and as long as we make it to January when the first surgery should happen I will be okay. But today we learned the first surgery to fix the lip will not happen until four, five or six months old. The palate, which now I am praying on my lucky stars we are blessed with something minor (trying to think positively here) because that surgery will not happen until nine or ten months old. My major question was, what happens after he’s born? Here’s the run down I got:

I will still have my scheduled c-section and at some point after his arrival when we have bonded we are supposed to ask our nurse to page Dr. Nelson because he likes to come visit while in the hospital. The good thing with this news is that I was under the impression from our genetic counselor that he would be whisked off and evaluated by the cleft team shortly after birth. This will now come at some point during the first month when we have a scheduled visit with the eight doctor team.

I will be staying in the hospital an extra one to two days for extra feeding/therapy care. While the c-section already lands me in the hospital for three to four days I can now expect to be there just shy of a week. They will bring in a lactation specialist and occupational therapist who will work with me to see if he will be able to suck. Most cleft babies have a hard time because the negative energy cannot suck the milk to the back of the mouth resulting in the use of the Haberman Special Needs Bottle which has an elongated nipple that sits further back in the mouth versus a tradition nipple. The bottle has a softer body which allows the parent to squeeze the milk into the babies mouth as they are attempting to suck. He described this as watching the baby attempt to take a breath and that’s when we would squeeze, reality check for mommy and daddy was rough again forcing me to want to curl into a ball and cry. Then, they pretty much send us on our way with our happy, healthy, feeding well baby like they would any new parent and pray for great growth and fat supply for his upcoming surgeries. We will have normal visits with our Pediatrician, Dr. Martinez, and in that first month just a visit with the cleft team. Then we wait for time to pass…

The overall timeline of events we were given on our handy dandy educational printout, A Parent’s Guide. Not that you necessarily care, but knowing me I will lose it so this will serve as a nice friendly reminder. After we leave the hospital we will:

• See Dr. Martinez in 2 to 3 days and 2 weeks. 
• See a Plastic Surgeon in 2 to 4 weeks. 
• See Genetics Pediatrician in 2 to 4 weeks. 
• See Head & Neck Surgeon in 2 to 4 weeks for hearing test and decide whether or not to put in middle ear ventilation tubes when the cleft lip or palate is repaired. 
• Cleft lip repair done anywhere from 3 to 6 months. 
• Cleft palate repair done between 9 and 12 months. 
• Speech therapy starts around 18 months. 
• Regular appointment with cleft team every 6 to 8 months for the first 4 to 6 years. 
• Meet with Orthodontist around age six to discuss braces. 
• Minor surgical revisions of the lip/palate/nose are sometimes needed before school starts since the face is growing and they are just fixing the areas. 
• Alveolar cleft/bone graft surgery is done to repair the cleft defect in the upper jaw and gums between ages 6 and 8. 
• Corrective jaw surgery after adolescents facial and jaw bones are done growing. An upper jaw surgery is often done to correct for the overbite associated with initial cleft defect, from what Dr. Nelson said, it gives a more full look to the face basically bringing the jaw forward. This happens around 16 to 18 years of age.