Anna meets the Duke Team

Today we headed over to Duke to meet with the Cleft Team.  First, let me just say it is such a PRODUCTION to go anywhere with a baby.  I feel like there is an entourage of crap that I have to carry around now.  Speaking of that, it's a good thing I over packed because she threw up all over her onesie and stroller blanket while we were there.  Chris was amazed that I had packed an extra set of clothes and blanket (seriously, I may not be overly "mom like" but give me some credit!).  Other than that small episode, Anna did great!  The Doctors enjoyed meeting her and everyone has commented on how pretty her complexion is and how laid back she is- I hope it stays that way! 

 

First we met with the Speech Pathologists and discussed her feeding. We are getting the hang of using the Pigeon bottle and Anna is back up to her birth weight, so that's good news!  We will just keep doing what we are doing.  Next we met with the Social Worker on the team.  Her primary job is to make sure that we are feeling ok with everything and to connect us with other parents going through similar situations. After that we met with the Plastic Surgeon, Dr. Marcus and the Orthodontist, Dr. Santiago.  We confirmed that Anna is a candidate for the NAM Device (Nasoalveolar Molding) so Dr. Santiago went ahead and took an impression of her mouth.  Parents are not allowed to be in the room when they take the impression (it's not a fun process), but they said Anna did a great job. 

 

So here's her current timeline-

-  Anna will start wearing the NAM in 2 weeks once it's made and will continue to wear it for 10-12 weeks. We will go see Dr. Santiago every Wednesday morning to get the NAM adjusted (similar to braces).  This will be a painful process (probably more so for me and Chris) but they said they have only had a few parents completely bail on wearing the NAM.  We will just have to remember that in the long run it's the best thing for Anna.

 

- After 10-12 weeks (possibly longer) they will schedule her first surgery which will consist of the lip repair.  Lip repair only requires a night or two in the hospital and a week of stitches.  We will continue to use her special bottles after the lip repair because she will still lack the ability to suck.

 

- After lip repair we will continue to meet with the Duke team and monitor her progress.  At 9-12 months she will then have her second surgery which will consist of palate repair and potentially Gingivoperiosteoplasty to bring her gums together.  This is a more complex surgery and longer recovery time.

 

The goal after palate repair is to do nothing for a few years (in terms of surgery).  Speech will monitor her and she will likely need speech therapy during the early years of her life, then around age 6-7 she will likely need additional surgeries for her gums/teeth.  Then once she hits the teenage years she will likely need surgery on her nose. 

 

It seems like a lot (and it is) but the team is so reassuring that this is everyday for them.  Dr. Marcus said that we should all be very optimistic about Anna's outcome after surgery.  She does have a pretty wide cleft, but it's nothing they haven't seen before and she has all the correct pieces they are just not in the right spot.  This is a much easier situation to correct than if she was missing pieces of her lip.

 

It was a productive morning and I am glad we have somewhat of a game plan together now.  It will definitely get harder before it gets easier but I have confidence that Anna will persevere through it. 

 

After our meeting we decided to hit up the next Donut spot that we didn't make it to last Saturday since Anna arrived early.  Monuts in downtown Durham was delicious!  Duck Donuts is still my favorite so far, but I enjoyed the eclectic atmosphere at Monuts and would definitely go back.

 

Here are a few other pics from this week :)

Sarah and Matt brought us dinner on Tuesday and Anna met baby Grayson

We like to take selfies

 Snuggle time

 

This is completely random but the girls brought over the cutest cupcakes I have ever seen on Sunday.  Rachel's brother is getting married and these cupcakes were from his engagement party.  I had to include a pic since they were so pretty and tasty!

 

Tomorrow we head to the Pediatrician again. I seriously don't know what we do all day but the days have been flying by.  Chris goes back to work on Monday and I am dreading it.  What will I do all day by myself with a baby?!  Wish me luck!