Yum, yum, food!

Scarlet sure enjoyed her watermelon last night! She must have eaten 4 entire pieces! Usually when she eats she'll take a bite and spit it out then throw whatever it was on the floor. Her biggest problem has been chewing and swallowing which is pretty much eating altogether, but she is starting to get a lot better. Typically, if the food isn't a smooth consistency she will gag and make herself throw up and not only what she just put in her mouth but everything from a few hours ago as well.
So, eating has been a struggle her entire life and it is so relieving to me that she is progressing significantly. I was browsing through old hospital photos remembering how tiny she was and everything we experienced together and I have forgotten just how difficult getting her to eat at all had been for so long. She started off almost immediately with an NG tube (nasal-gastro) and we got her off of that after month or so and then shortly thereafter she got so sick again and the Dr's opted for her to be fed intravaneously through her hickman line. I fought and fought to get her off of that.
Some of the Dr's couldn't understand why I was so persistent but my nephew was on a Gastro fedding tube and has had difficulty eating his whole life as well and I didn't want Scarlet to go through that. So, when her respiratory rate was down enough to eat without aspirating, I had a bottle for her all the time. Sometimes I couldn't even get her to eat an ounce at a time and some days she only ate several ounces the entire day and supplemented IV. I feel a little emotional just writing about this because I am so proud of her with all that she has gone through. I'm glad I endured and got her off the tubes, I feel like she is better for it and has progressed well. She's no where near a normal kid yet but she is doing so much better.
Here is little Scarlet and the disposable hospital bottles that are all too familiar to us. I remember taking this shot, if you can see Scarlet is holding the end of the bottle. She is in her foam wedge that I still have because it was amazing! I plan on putting all my babies in them while they sleep.
I don't know if I've blogged about them before but they are cut in triangle form and at maybe a 45 degree angle. They have a little seat like deal that keeps them from slipping down and side bars with straps attached. Amazing. She slept so good in it and I never had to worry about her throwing up and choking, or SIDS. I also got to sleep next to her in the big hospital bed and she didn't need to stay in a crib which was really nice. I always tried to be awake whenever the nurses came in at night, especially during blood draws and this was nice because I was sure to wake up when they came.

Scarlet has a feeding therapy scheduled this month and I'm really looking forward to it. I think a lot of her problems come from being a little delayed due to the long periods of time she wasn't eating orally and time is a lot of what she needs but I'm sure they will help get her to be more comfortable chewing and swallowing.