Day 39 at Home- February 17, 2013

We went and saw Dr Doumit on Friday. He is the craniofacial doctor that will eventually be operating on Avery's cleft palate. He said her cleft will be fixed when she is 18 months old. I asked why they wait that long (since everyone keeps asking me) and he said it's beneficial to wait that long for a few reasons:
1.  It is going to form scar tissue and if they do it too soon, it could mess up the formation of her mouth/speech.
2. She will be bigger and will be able to handle the anesthesia better.
3. Her mouth will be bigger and it will be easier to do the surgery than when she is really little.

I asked him to describe the surgery for me. What they typically do is cut a "Z" pattern in the roof of her mouth and then pull the tissue together and stitch it up. They then put a flap of tissue over that(which they get from a tissue bank) for support and sew it up. She will spend the night in the hospital. We will have to feed her through a dropper/syringe. Her arms will be put in restraints for a few days too so she doesn't grab anything. The nurse said the first week of recovery is pretty rough. This is another reason I would like to keep the g tube in. We might need to use it when she is recovering from her surgery. I am happy it will be about a year from now so I have time to save up PTO. Looks like my beach vacation next year will be spending time helping Avery recover (probably sometime in the winter).

Dr Doumit also suggested we have her sleep on her stomach instead of her back. The reason for this is because when she is sleeping on her back, her tongue pushes the roof of her mouth and pushes the cleft open/keeps it open. He said by having her sleep on her stomach, it will help not to make it worse. She is also getting a flat spot on her head so for naps and sleeping we are supposed to prop her on her one side.

We have an appointment with the cleft palate clinic in May. A whole group of specialists are there including Dr Doumit, a dentist, even BCMH (Bureau for Children with Medical Handicaps).

This week she seems to be so much more alert and aware of her surroundings. Her favorite thing to do is stare at the white curtains in our living room. We had her in the Rock n Play sleeper and she stared at the curtains for two hours the one day. I know that makes it seem like she has no idea what is going on but whatever, she was very content. I think she even cooed at the curtains a couple times. It was very cute.

We get a little break from appointments this week. She only has one and that is on Thursday with Help Me Grow.

I wanted to share this woman's blog with you. It really puts things into perspective every time I get frustrated about the things that aren't going as expected with Avery. It makes me realize just how lucky we are and that things could be so much worse. She had a baby at 23 weeks and her daughter is 3 years old now and has multiple issues. She has a few things that Avery had/has such as a PDA, g tube, etc but also has a tracheotomy and needs to be on a ventilator at night. Every time I read the blog I cry but it makes me appreciate what we have.

The link below is of what every Preemie parent thinks about and deals with....
http://understandingprematurity.com/2012/03/23/1198/
and this is the general link to her page
http://understandingprematurity.com/


And now for the pictures...

Hanging out with Mommy

 

Napping with Daddy on the couch

Lily was not excited when I tried to climb on her and ride her

 

 Scarlett doesn't understand tummy time. She thinks you are supposed to put your belly in the air. I am only 5 months old and I know what tummy time is.

My monkey wubanub(pacifier) and I (Thanks again Barb and Abel!)

 

 I am wearing a cute bonnet that was made by Aunt Terri's friend, Cindy. Thanks Cindy for the bonnet, booties and headbands!

Acting like a big girl and napping in my big girl bed

 

 Mommy said she is lucky she has such good insurance. This is the total for my time at Hillcrest. It doesn't include my time at main campus or my surgery. I don't know much about numbers or money but $406,000 seems like a lot! Mommy said she is surprised it wasn't more.

Mommy's friends from Independence CCF bought this bib and I think it's appropriate for me (and probably Mommy, too)

Mommy and I were talking to each other one day

 

Lily liked me (until I tried to ride her, see above picture)

One of Mommy's best friends, Michelle, came to visit me

 

Jenny, my cousin, also came to visit and fed me!

This is a horrible picture but Mommy tried to take a pic of my cleft palate. She believes the vertical line on the roof of my mouth is my cleft. Sometimes when I am screaming, it opens a little and you can see a hole. This might just be a bad angle of it