No Manners

I guess we need to teach Rylan that you aren't supposed to talk with your mouth full!  At least she is enjoying eating the squash (although everything, including her pants, ended up orange!)

 

A big squashy smile

Let Me Help Mommy!

Today was our best day eating the rice cereal.  I actually had to make two extra servings after Rylan finished the first one.  I have learned two important things that will help feeding time in the future.  First, the food goes in better on the side of her small lip, instead of the big lip.  Doesn't totally make sense to me but I won't question it.  Second, Rylan has to be holding the spoon otherwise she won't open her mouth to eat.  Guess she is already showing off her independent personality!

After all of that eating, what better time to take a nap!

Not My Tummy!

We are now three weeks post surgery and Rylan's lip is completely healed and back to normal.  I have been trying to keep up with the tape but it has really become a lost cause.  It is soaking wet a few minutes after we put it on, so I mostly replace it right before she goes to bed.  I am very curious when we go in the middle of April to see how soon Dr. Morrissey wants to schedule the next surgery.  Part of me just wants to get it over with and the other part wants to prolong it as long as possible, especially since Rylan is doing well right now.  

We have had many exciting moments in the last week or so.  She ate her first bit of rice cereal and has been improving each day.  As you can see, the first day most of it ended up on her face!

She has also learned to roll from her back to her belly.  However, she is not so good at rolling back over and she doesn't really like her tummy.  Most of the time she ends up screaming and we have to roll her back.  

Here is a 2 minute video that shows all Rylan can do at almost 5 months old!  We've got talking, tongue sticking out, grabbing our feet, eating our hands, rolling over, and crying!  Enjoy!

Two Weeks Later

It has been two weeks since Rylan's surgery and you would never know that it happened.  She is completely back to herself (including sleeping at night) and of course, her lip looks pretty similar to her pre-surgery lip.  She had her 4 month check-up today and is growing well.  Small in all areas, but that is not surprising looking at her Mommy and Daddy.  We got permission from the doctor to start some rice cereal in the next few weeks.  I am so excited to start feeding her real food!  Hopefully she doesn't have too much trouble keeping the food in her mouth.

Today was also exciting because Rylan was the "Smile of the Day" on Andi's Smile Page on Facebook.  This is a site run by young girl who also had a cleft lip and palate.  She raises money and awareness for Smile Train and everyday she chooses a new baby with a cleft to be honored as the "Smile of the Day".  It is fun to see Rylan on there.  I made sure to print the page out for her baby book so she can see how many people thought her cleft smile was beautiful!

Surgeon Visit

The visit with the surgeon went well this morning.  He was very disappointed that it split but was still positive about everything.  He considered having her come back in to the hospital on Monday to repair it, but once he saw her he decided that was not a good idea.   He said that the tissue was so soft that it would just pull apart if he tried to stitch it so soon.  His recommendation is that we don't attempt the lip adhesion again, but instead just do the real repair.  He said he would have liked to have the lip adhesion in place to help minimize scarring, but he doesn't think it is worth the risk to try it again. 

I asked him why the adhesion can split but the real repair can't.  He explained that they make the same markings for both surgeries, but in the adhesion they can't cut into as much of the tissue as they do with the repair.  This is because some of the tissue needs to stay intact otherwise the real repair won't be effective.  Basically the adhesion is a more superficial surgery, while the real repair goes into deeper tissue and uses stronger stitches.  There should be no chance for the lip repair to split after that surgery. 

We go back to see him again in one month.  Until then, looks like I am back to taping her lip (Ughhh!).  I know the adhesion wasn't as successful as we hoped, but I can see some improvement.  

On a side note, Rylan still isn't sleeping well.  I've been having to get up with her every hour or so, but she does go right back to sleep when comforted.  This morning she slept from 3:30 - 7:30, so maybe we are getting back on the right track!

Worst Fear Realized

So apparently the odds weren't in our favor.  Dr. Morrissey said that there was a 20% chance the lip adhesion wouldn't hold and it looks like we are in that 20%.  Everyday it looked like her cleft was reappearing just a little bit more, but I was holding out hope that the part under the tape was still intact.  Well this morning when we gave her a bath her tape came loose and when we took it off, there was her gum, just like before.  I know that there is nothing we could have done and that the tension on the lip is just so strong because the cleft is wide, but I feel horrible.  I am going to give the surgeon a call on Monday but I know there is nothing we can do at this point but wait for it to heal and try again.  

On a positive note, Rylan is certainly back to herself during the day.  Nighttime is a whole different story.  She is still frequently waking up and the only time she really seems to get much sleep is in her car seat.  This is a completely different picture from the little girl who would sleep through the night just a week ago.  

She is currently taking a nap in her car seat, since she is probably still exhausted.  She is wearing her "Tough Cookie" onesie from her Aunt Kim and Grandmom and I think that phrase says it all.

Recovery Day 3

Rylan is getting closer towards being her old self.  She is playing with toys (she really likes the Glow worm!) and even giving half-smiles once in awhile.  Last night she slept for 3 hours at a time, but only in her car seat.  She still doesn't seem to want to be in her crib, but we're going to continue to try.  She hasn't been on pain medication all day and her lip doesn't seem to be bothering her much.  It looks to me like the bottom of the lip has split a little bit, but Dr. Morrissey said that there was a good chance that could happen.  As long as a majority of it holds in place, the surgery has done its job.