Less than a week after the diagnosis, we headed with Precious to the nearby University Hospital to meet the specialist. We went again a month or so later, so the visits are blurry in my head. But they boil down to the same things!
I really, really like the specialist. She's young, with 3 children, the youngest of whom is only a few weeks older than Precious. She was empathetic to me--especially around the area of breastfeeding. She gets it--from both sides, the mommy desire to nurse but also the difficulty it is for babies with clefts.
She made it clear that she didn't want to discourage breastfeeding, but it is really so hard for babies. A normal feeding should never take longer than a 1/2 hour, otherwise Precious burns more calories than necessary for optimal growth. So, she said, if we want to keep breastfeeding by all means do so. BUT, if it takes, say 20 minutes to take a 4 oz. bottle, nurse for 10 minutes and then do the bottle. AND, when there are times it is clearly for comfort, let Precious nurse as much as she wants--if she's not hungry, she'll do what she needs to do and can control how much she is really working. How that's working out will be its own post....
We thought it was only the soft palate, but she indicated that it also is the edge of the hard. Still, probably one of the least severe type of cleft.
Precious will need surgery for sure--at least one. This will be when she is 12-15 months old. That's the optimal time. Big enough to handle surgery well and young enough that most language isn't developed. Depending on how the surgery goes and how speech develops, she may need speech therapy and/or another surgery later down the line. By the time of the surgery, she will need to be weaned from any 'sucking' things--pacifiers, bottles, straws, etc. (She can still, of course, have breastmilk--just not from anything she needs to suck!) After the surgery, they don't want her sucking because it could rip the stitches out. And, for 3 weeks, we'll have to put her arms in splints at the elbow so they can't bend. No chance to get her hands in her mouth if she can't bend her arms! We think she'd be a pacifier baby if we let her, unlike Baby Girl who never liked one, but we aren't even going to introduce one. Precious does some sucking on her fingers, but often makes sucking sounds even without anything in her mouth. Can't do anything about that I guess!
The big goal was to get her up on the growth chart by the second visit with nutrition coming from formula or breastmilk or both. We did it! We did about 1/2 formula and 1/2 breastmilk for much of that time in order to bulk up calories as we knew how much the formula had. The doctor was pleased with her progress and said we might be able to consider surgery earlier, but we'll decide for sure at our next visit which is in January (unless we have concerns before then).
Precious will be more prone to ear infections and fluid build-up in the ears because they can't/won't drain right. But tubes for kids and ear infections aren't that unusual. I'm hopeful she will be like her sister though and not have many!
The specialist had also told our regular doctor that she was impressed with how little weight Precious had lost in that month pre-diagnosis. Precious had worked hard! And now we just treat her like a baby--do all the 'normal' things at the 'normal' times. She did warn us that solid food will be messy! Precious will have to learn how to use her tongue to force the food down the right way--and until she does, food will come out her nose. When she does spit up now (rare though it is), it comes out her nose. I'm glad she told me--I think I would have freaked out to see peas coming out her nose! And when you look at an image of how the body is made, it makes sense. The cleft opens up her sinuses so instead of food going down, it goes up.
All in all, things are good. It's good to know what's coming, to have time to prepare. And to not have concern about Precious' growth cloud every waking moment.