Day 12

I went to bed last night hoping Ava would take her feeds. I woke at 3:30am to pump for Ava, and I called the NICU. Her nurse told me that she had taken her last two feeds fine and that her spitting them up the night before must have been a fluke.

This morning I called and was told that they were going to give her an echocardiogram to check her heart and see if the hole that every baby has been born with, had reopened. She had it checked last week and it was closed at that point. If it was opened, it would tell us why her gasses had been so bad and why she need more oxygen. She was tolerating her feeds so they were going to increase her to 2cc this evening. The culture to see if she had an infection still had not come back positive, so that was also a good sign she may not have an infection. Her arm as well was looking better.

I called later in the day to find out if the results from the echo had returned. They had not. Anthony and I planned on taking the girls with us to Buffalo, and they would drop me off at the hospital while doing errands. I went to the NICU only to find out from one of the neonatalogists, that the hole did open up again in her heart. He told me they were trying to get this type of medication to possibly close it, but that the company had temporarily stopped making it. There was also another type of medication to use, but they haven't had much success at Sister's with it. They called Children's Hospital and Strong to see if they had any of the other medication that they were used to using. Unfortunately, Children's had some but they wouldn't let us have any in case they needed it for another child with a more extreme circumstance. So, Ava is going to get this new medication starting tonight at 7pm, tomorrow and Sunday night. Children's did tell Ava's doctor that they have had success with it. They will check with another echo on Monday. If her gasses get much better, we can also probably believe that the hole is closing. Children's also said that if the hole doesn't close after the first round of medication they will give us the other type of medication. They will try and give Ava 3 rounds of medication to close the hole if it doesn't work the first time. If it doesn't work after the 3 rounds, she will have to have surgery. The doctor told me that there isn't a surgeon close by to do that type of surgery, so Ava will have to go to a surgeon, or the surgeon will have to go to her. I'm praying that we don't get to that point. In the meantime, they need to dehydrate Ava until the hole is fixed. She is not allowed to eat until she is off the medication. I'm sad about this because she was starting to look not as skinny.

On a good note her bilirubin test was better so hopefully she can go off the light.

So another day has passed, and I'm hoping for more miracles...