This past week has been the hardest since having the girls home. I finally broke down yesterday and did something I hardly ever do. I cried. A lot. for about an hour I just cried. Lilah has been refusing her bottles and we are back to tube feeding her. She was still puking up all her feedings. This was even after the doctors started her on reflux medications. She was screaming all throughout the day and night, at the top of her lungs painful screaming. Nothing helped. So yesterday after refusing her bottle, she gagged and up came her tube through her mouth. This is only the second time her tube has come up and out her mouth. Luckily we can hook the tube through her nose and pull it out quickly. I lost it and felt so defeated as a mother. I have said this a few times, but I was feeling more like her nurse instead of her mother. Most of my day consists of sorting medications, replacing feeding tubes, blah blah blah. You all know because I have mentioned it over and over. It is hard to understand unless you have been there. Having a preemie is hard, having a preemie with a HUGE hole in her heart is harder. I just want to feel like I am bonding with my daughter. OF course with all the added stress of her medical issues, I get frustrated and upset. None of this is her fault. I just want to do the best for her.
Today was her cardiology appointment. Everything is the same. I asked if there was any chance her hole would get smaller and they told me no. Because of the size of the VSD her right artery is also offset which is causing issues also. After fixing her VSD the artery should move back into place. They want to wait until after rsv season for the surgery ( which will be mid February or early March). That is another issue. We are still fighting our insurance company for them to cover the series of shots for her. The Cardiologist is off next Wednesday and she is going to call them on her day off and let them know AGAIN that Lilah could die if she gets RSV. She fits into every criteria for these shots. We have been fighting them since Thanksgiving. It is freaking insane!
Once Olivia starts daycare, they will need to sleep in seperate cribs. We will have to be very careful on pacifer sharing etc. If any of the kids at daycare gets sick I have to remove Olivia so she doesn't bring anything home to Lilah. Right now our job is to keep her healthy and gaining weight until the surgery. That may seem like an easy task, but I assure you that it is not.
I can't wait to see my little girl healthy. See her growing like her sister. She her with energy. See her not sick and hurting. I can't wait for that day. It will be the one of the best days of my life.