Avery Update

So I came home last night to get a few things done at home and go to work since Nicole (Hillary's mom) arrived today. Hillary and Avery are still at Children's Mercy, but now in the company of Grandma Griffiths.
For those of you that haven't already heard, we found out that Avery has a heart defect. From what the doctors have said it's not too major. She has Pulmonary Artery/Valve Stenosis (undersized artery and valve from the heart to the lungs), and a Ventricular Septal Defect (opening) between the bottom 2 chambers of the heart. The stenosis limits the blood going from the heart to the lungs to be oxygenated. The septal defect allows the blue blood (not oxygenated) to mix with the red blood and go through the body. This can cause a low oxygen saturation in the blood which can cause the baby to turn blue or grey. Fortunately she is nice and pink and hasn't had any sign of turning colors at all. They don't think her case is too severe. Her defect is close to a defect called "Tetrology of Fallot". If she had a full case of that defect, they would call her a "Pink Tet", because she doesn't turn blue. The Cardiologist made sure to emphasize that while she has 2 of the associated defects, he doesn't consider her to be full Tetrology patient. They said that as far as heart defects go, it's one of the better ones to have. It is operable, so she will have to have surgery to fix it. Since it isn't an urgent surgery, they want to wait for her to grow and get bigger and stronger before they operate. Usually they wait 9 months to a year before they do it. They did say that there is always a small chance it could grow and correct itself, but more than likely it will have to be fixed surgically. We hope and pray that she won't have any lasting affects and can be a happy, healthy, and active just like all the other little girls!
In the mean time she is doing pretty well. She is steadily progressing towards hopefully coming home soon. At this point they she is just like any other baby born a little early. She started by slowly weaning off of oxygen to room air, moving into a regular crib (not heated), and now she is learning how to mouth feed good enough to go home. She is being a little lazy and stubborn (not sure where she gets that from...), but is getting better and better at it. Yesterday the Nurse also removed the IV. So now all that's hooked up are the monitors and the feeding tube in her nose. We are proud of her for the progress she has made.
It's been fun just to spend time with her and hold her all day long, even though all she does is sleep. It hasn't been so fun spending all that time in the hospital! In the NICU they don't have any T.V's, no cell phones, only 2 visitors at a time, one of which has to be a parent or grandparent, and they don't allow you to fall asleep at the bedside! Not even a little nap! The only things we could do was read and hang out together. Time together is great, but I was getting pretty stir crazy by last night. Going to work today was actually kind of exciting and relieving! They did have a computer room available which helped a little.
Since we live far enough away from the hospital, we were able to get a room at the Ronald McDonald House across the street. Definitely a huge blessing, I don't know what we would have done without it. I never really understood what they were before. This one is kind of like a hotel/dorm. They have a big community kitchen, with lots of donated food stocked. They also have different organizations that volunteer and bring in big buffet meals about every night. HUGE blessing!
So hopefully all will continue to go well and we can bring her home by this weekend. We really appreciate all the thoughts and prayers and support from everybody, it has been a huge help in many ways! Here are a few more pictures that I brought home with me. Hillary has some more that are in the memory card that is still in the camera, so I'm sure you will all see plenty more pictures!

Momma saying goodbye before the transfer

In the transfer incubator

At the NICU

She enjoys the pacifier