Craniofacial Clinic

The Craniofacial Clinic trip was pretty successful, and generally had good reports. We got there a bit later than I had wanted, but I had forgotten to account for rush hour in the morning...we weren't late though, so that's a victory. We were up a little after 6, and out the door around 7:20 am, with no time to stop at S'bucks...bummer.

We had to wait for about 45 minutes before we saw anyone, because it's a first come, first serve order. We did have a light/continental breakfast provided, so that was a nice feature.

In that time, I walked around with J in the Beco to keep him asleep, but then decided I should nurse him before he got grumpy while seeing the specialists. While I was nursing him, he had a super smelly/messy diaper and needed a new outfit. At least I had over-packed the diaper bag, and had plenty of everything.

The first person we saw was someone who makes sure we have a way to pay for things, and know about all of our options for financial assistance. Thankfully, we have great insurance and good enough means, so that was a short visit.

Then we went straight to the orthodontist and speech people. The orthodontist had a surprisingly good outlook for J's jaw. I was a bit worried that his bite would be messed up due to the absent/tiny nasal bone--I thought it may have affected his upper jaw's development. The orthodontist had a similar suspicion just from looking at him, but when he felt in J's mouth (including coaxing him to bite down), he was happy to report J's jaws appeared to have a "good relationship." He said we won't know about the typical crowding problem many kids have (why many 'need' braces) until he is older, but as for problems right now--he didn't see any. I attribute some of this to breastfeeding. Not only is it great nutrition, it helps the mouth and jaw finish developing properly after birth... though I know there are some jaw problems only surgery can fix, and to have avoided those, I'm very grateful.

The speech pathologist informed us that it's likely J won't have any speech issues related to his small nose and nasal passages. He might pronounce N, M, and the "ung" sound differently (as if he has a cold)...but he might not...and definitely wouldn't after his nose surgery. Those are great things to hear. They were all really nice, so I picked their brain about G and her bit of a speech delay, but I'm not really worried about it. As I've mentioned before, I truly think her issue is that she's so far advanced in other areas... She's talking better than ever and has tons of words, but isn't saying phrases yet, and still says "duh-duh" for a lot of things, rather than the word. Anyways....

Then we went back out to the waiting area. J was hungry, so I nursed him again, and changed his diaper. He got fairly grumpy, but ended up falling asleep as we went to see the child development psychologists. There wasn't much to talk about yet, but I did treat them like a regular ol' counselor to get some things out there... especially how I felt guilty for burdening my husband with all of my emotional stress, and yet he doesn't seem to reciprocate much. He swears it's fine and that he's okay with it all....so God Bless him for that. The psychologists were also good for reassuring us that J is pretty much a normal baby--just with a special nose and rare genetic condition. He's doing all the right baby things. Hooray. They also told us their role in the future...preparing us mentally for surgery, preparing J for it when he's older, and also giving us/him tactics for combating any social issues that might come up since he doesn't have the most normal looking nose.

After another brief wait, we finally saw the man of the hour...J's plastic surgeon and ENT doctor--Dr. A. We really like him, and he maintained that J is doing super awesome, and we just need to push off surgery to as close to kindergarten age as possible.

He said that he's consulted with his previous professors and colleagues in the same line of work, and reported that they all agree with waiting until around 5 or 6 for J's surgery. He also said that J's situation is so rare (the severity of his nasal abnormality with no other pressing issues), that doctors really only see 1 or 2 cases in their entire careers. He said that, of course, we are welcome to search out a second opinion, but that he see's no need to do surgery any sooner than age 5, unless J has some reoccurring illnesses that larger nasal passages would prevent, or if he takes a turn for the worse. One of our biggest fears is J ending up with a tracheotomy, but both the NICU doctor and Dr. A feel that's not even an option unless something completely crazy happens. Dr. A made it sound like we'd just do J's nose surgery sooner, if needed...but he's still optimistic that J's in great health and has natural survival mechanisms that are really good.

Dr A. also said that J's developing a flattening spot on his ear, because he likes to lay on one side more than the other. He gave us some 'physical therapy' type things to do to stretch out his neck muscles and encourage him to turn his head more. I don't think J likes it very much, because he sure has cried a lot whenever we've tried to do it. I don't want him to have a messed up ear too, so we are trying...but we are being less adamant about it than I think Dr. A intended...but in our defense, J's already started turning his head a lot more. He had awesome tummy time yesterday and is freely turning his head better already.

After Dr. A, we were done with our marathon morning, and will go back to see him in regular office hours when J is 6 months old.

The hardest thing in all of this is that we keep hearing good reports, but I'm so scared to be happy about it. Yes, of course it's good news....but it's also scary to know how quickly it could go bad...or that there are tons of ****'s (yes, but or in case of or unless there's or if this) when it comes to J's health. So, yes, we heard all good news at J's doctor appointments, but it's still a proceed with caution situation. Praise God things are so positive right now, and prayers that they continue to be.

I'm a lucky mom, with two sweet kids