Show me yours...

So I had this little mental goal in my head of posting at least one cleft related blog each week during the month of September. I'm not doing such a good job of that, but I'm going to try.

This week I figured I'd give you some pictures.

A lot of times, what people envision in their heads when they think of cleft just isn't the reality, especially in Little Miss Sunshine's case. So I thought I'd post some before and after pictures so you can get an idea of what her cleft palate actually LOOKED like.

Miss Sunshine's formal diagnosis is an Isolated Cleft Soft Palate with Bifid Uvula (meaning her uvula was split as well). To date, we are not aware of any possible genetic contributions, as we are waiting on insurance to kick in so we can have genetic testing done to eliminate any disorders, but she does not have any markers of any of the more common disorders associated with cleft, so our cleft team believes she simply has the isolated cleft. I will go into more detail about what the different clefts are and even touch on some of the possible disorders that can be associated on a later blog. For now, we'll concentrate on the ICSP that she has.

Here is what her palate looked like before surgery: (Bear with me - it's darn near impossible to get a clear picture of the inside of an infants mouth, much less the roof of their mouth... so these aren't the highest quality, I know)

It's kind of hard to see from these pictures, but you could see straight into her nasal cavities (which always made for fun eating time)

And this is what her palate looked like one week post op...



Again, sorry for the quality. When you look at these pictures, you can see where they cut on the sides of the roof of her mouth to release the tension in order to sew the cleft together. There is a lot more involved in cleft palate repair, including recreating the nasal lining, rearranging the musculature of the roof of the mouth, as well as the closing of the roof of the mouth. I'm working on some diagrams, etc, to help explain all of these and will post it on a future blog.

For now, I hope these pictures were able to make it a little bit more clear to you what a cleft soft palate looks like and what we have been through with our Little Miss Sunshine...

She said Dada!!!!!

I almost nearly cried today. Daddy Mac was feeding Miss Sunshine some ranch dip (yeah, I know...) at lunchtime today and out of nowhere she just started babbling "Dadadada". And then repeated it.

This probably seems like not such a big deal to most of you. Those of you who have babies with cleft palate will fully understand the absolute JOY we had at hearing that sound leave her mouth. See, prior to repair surgeries, babies with cleft are incapable of creating the amount of suction necessary to make most consonant sounds. They can make M, N and Y sounds only. After repair, it all depends. Some babies start babbling new consonant sounds right away. Others take their own sweet time, and still others may require further repair surgeries to give them the capabilities of making these sounds.

Miss Sunshine's palate repair has been declared successful by the surgeons. But we still weren't hearing any new consonant sounds like we were told to expect. It has been concerning both Daddy Mac and I, and also Miss Sunshine's speech therapist. We had really expected to start hearing more babbling than the "mama" and "more" she was already capable of saying prior to surgery. (Okay, "more" sounds more like "mo" but she is aware of what she is saying and uses it in correct context to ask for more. It counts!). We've tried lots of different things with very little success. We have seen an increase in her responsive sounds - sounds she makes back to us when we talk to her or ask her something - which had been on the low end just a few short weeks ago. She did add "uh-oh" to her repertoire (and has been saying it non-stop I might add) at her last speech therapy session. But as far as actual new consonant sounds, it's been absolutely nothing so far. UNTIL TODAY! And even though it's only been once, and it wasn't in response to anything and likely didn't even MEAN anything, the fact that she said it is HUGE. Out of the ballpark, up in the stratosphere, huge. Because it means that she IS capable of saying these things. We now have a better frame of reference for moving forward with her speech therapy, as well as having the knowledge that she is capable and that we can expect results that we were unsure we would be able to get even as recently as this morning.

My heart is singing. I was having a "horrible, terrible, awful, really bad day" (I'm pretty sure that's from a book I read way back when, but I'm too lazy to look up the exact reference so I'm putting it in quotes to make it clear I am NOT plagiarizing) up until the point she said that. It's amazing how much such a little thing can make your entire day turn around.

Surgery has come... and gone.

Well, I had the best of intentions to update on Miss Sunshine's surgery while we were in Chicago. Unfortunately, the fates conspired against me and I had VERY limited Internet access while we were there.

Everything went WONDERFULLY. I can't say how many times the staff at Shriner's Hospitals for Children were SO wonderful to us. Really. I've never dealt with a more caring staff of medical professionals ever.

Miss Sunshine had the tube in her right ear replaced. I don't have all the details on that as of yet - the ENT had numerous cases that day and wasn't able to come speak with us, but I will be receiving copies of all the transcripts of her surgery so I should have more details on that shortly. The tube that was already in place was either blocked or had fallen out - we don't know.

The plastic surgeon said that her surgery went beautifully. Her cleft was very narrow, according to the surgeon, and they were able to do the repair without much tension, so they expect wonderful results. And, they only had to open up a portion of the roof of her mouth for the extra give, instead of doing a U all the way around like originally intended, so that was good news too! She has been eating like a champ - although now that we are home, she doesn't want much to do with her breast milk or formula. Yogurt and any baby foods watered down so they can go in the syringe, however, are a BIG hit. So while her breast milk consumption is down to around 15 or so oz a day, her other food intake has more than tripled - so I am not too concerned. She is at an age where her breast milk consumption should be dropping anyways, so I think this is more a normal result of no longer have the bottle than anything. She is doing very well with syringe feedings, which we have to continue, along with the arm restraints, for two weeks - then she can have a sippy cup, soft food, spoon feedings, etc. I am hoping to try nursing her once her first birthday gets her, which is February 3rd. My goal initially was to make it to one year with the pumping - so I figure, even though the 3rd is a bit past her two week deadline, I'll continue to pump to that date, then attempt the breastfeeding and if it is unsuccessful, will just be done with the pumping as well. If it is successful, then GREAT!

Anyways, just wanted to update everyone on how she is doing - I can hear her getting very angry at me in her crib, so I'd better go rescue her. I'll try to post a bit more detail, and some photos, this evening!

Nerves.

It hit me the other day that we have only a month and a half until Miss Sunshine's palate repair. She is not on a cup yet - she is totally attached to the bottle. I don't know what we are going to do about that. I'm going to really start pushing the sippy so I can maybe get to work on the regular cup they want her on before her surgery. They did tell us not to worry too much about it, we can always syringe feed her if necessary, but I would like to at least try. Especially since I like to have the kids off the bottle by 1 anyways. I guess we will see what happens. I am getting kind of nervous about the surgery now as well. I know it's necessary, and that everything will be fine, but there are still risks. And let's be honest - any time you have to think about your child going through something like this, it's bound to be upsetting. I just hope that I don't fall completely apart while I am alone at the hospital with her the night before. I already know I won't sleep - my mind will probably be racing non-stop, and Daddy Mac won't be there to keep me sane since only one parent can stay. I don't know how late they will let him be there, but he will certainly be there until the last possible second, I am sure. I wish I had a way to be better prepared for all of this. I can only hope that this will be the only surgery she needs and that she won't develop a fistula or any other complications.