G-tube update and ER trip

Last week we had an appointment to meet with the pediatric surgeon to put in Ruby's GTube. We've had this appointment set for a month, and I even tried to move it up knowing it is what Ruby needs so we can let her throat heal and be able to move forward. Wednesday came and I was so nervous. Yes, it's another surgery, but I feel like at the beginning of Ruby's life there were big things happening to help her eat by mouth. Even though she failed, we were trying. I guess I feel that once we get the GTube, things will stand still and the effort to get her to eat by mouth will disappear. That's my worst nightmare.I don't want my daughter to have to eat through a tube for the rest of her life. I know I am out of control, and I think that's what is hard. I can't help but jump forward years from now and think of her at the movies and not able to eat popcorn with her friends. They say, one day at a time, but I also think about the future...I am her Mom. I think about all of my kids and their future.

So we met with the Dr., who was highly recommended by people and she was super confident about things. She explained that it is like a beach ball opening with a little balloon inside, and we hook up feeds just like we are doing now. Ruby will be able to take baths the same and swim the same with no worry. She said its a temporary fix and we will be working with a speech pathologist  or feeding therapist to hopefully work Ruby into eating by mouth. She also said, everyone always wondered why they waited to get the GTube, that it was easier/better than they thought it would be. That was reassuring, it something we know we need to do, so we scheduled surgery for September 3rd at 9 am.

Before her cataract surgeries, Ruby had to be cleared by her cardiologist for surgery because she has a hole in her heart.  We learned this in the NICU, but it was always on the back burner because there were so any other things to concentrate on. We went to a follow up appt. in July, and her cleared her for her cataract surgeries. He said the hole was bigger than it should be, but we just will follow up in 3 months and make sure it's not getting bigger.

Fast forward 3 days. Nathan took the 3 other kids up north on Friday with my dad and cousins while I stayed home with Ruby. My mom decided to keep me company and stay over with us. I woke up to Ruby crying at 4:30 am. She felt very warm and was struggling breathing. Her fever was 101.1, so I gave her Tylenol and a breathing treatment with saline. After deciding that we need to take her to a dr... there is nothing open on Saturday morning. The late night peds urgent care closed at 5am and the regular peds urgent care opens at noon on Saturdays. So we took her to the ER and spent 8 hours there! They took chest X-rays and found her with clear lungs and no aspiration. Her oxygen level was 100%, which is fantastic. She didn't have a UTI (checked because of her fever). But the dr. In the ER was concerned about her heart. She said it looked vastly different than the X-ray taken when she was at the NICU and that we need to see our cardiologist as soon as we can. They sent us home and Ruby was pretty stable for the rest of the weekend. Still had the yucky cough, but otherwise was content.

                                     

 I called Monday on our way to see the eye Dr. (Ruby doesn't need glasses yet, yay!!!) and they could squeeze me in at 1.  They take another echocardiogram and tell me that the hole in her heart is 3mm larger than it was 3 weeks ago! 3mm!! Then he says that the lower left ventricle that had a thickened wall is 25% thicker. He starts talking about a syndrome called noonan's and cardiomyopathy and as he is saying those words I am bawling.  I cant get past his definition, heart-muscle-disease.This is the one thing they found on her that was supposed to be just  follow up and was always on the back burner. Now it's not and I really am not ok with it. My baby has enough going on, really her heart, too? Which in turn equals my heart too, because mine is breaking.