Well it's the first Halloween! We have some pictures from the NICU today. Grey had 2 costumes, he was a bat, and then the Incredible Hulk. Owen was a Tootsie Roll, and Lillian was a Butterfly.
First of all... updates on Lilly and Owen. They are doing great. We are having a little constipation issues, but night feeds have been going really well (knock on wood). Lilly continues to be colicy at night, she can grow out of that ANY minute now! I'm guessing the next time we go back to the doctor, we can start cereal and some food... which I'm hoping that works miracles, .... we shall see!
Grey is doing well too! He is almost off his oxygen, hoping this week or next he will be off of it all together! He is tolerating his feedings, and is at goal feeds for his weight. He occasionally has some loose stools, and isn't gaining weight as rapidly as he was, but all of that is expected. We are not trying to feed him bottles, as his lungs are improving, and we don't want to throw in a monkey wrench into all of that.
Grey's liver numbers are still high. This week I was doing research and remembered from my transplant days a medicine called Omegaven. Omegaven is mostly utilized by Boston Children's Hospital. It's basically IV fish/soybean oil. It is used to protect the liver against IV nutrition damage, but has shown to have some healing properties when it comes to the liver as well when the patient is off of iv nutrition. I called the neonatologist that day, and was hoping that he didn't think I was crazy, and he had already printed off the paper, and had been trying to get it approved by the medical director of the unit. (great minds think alike) So, instead of GOING to Boston, the medical director approved it... now we have to wait for the FDA to decide if because Grey is OFF of iv nutrition, if they will approve it. In the meantime, they are going to start him on some oral fish oil, because St. Judes had some good results with oral fish oil as well. That does not have to be FDA approved. As soon as Grey's liver numbers start to trend down the way we want them too, he can come home. Please pray that the FDA will let this go through, and pray that the liver gets better soon.
The kids really did well today all dressed up in their costumes. I know that they were hot in them. When we walked into Grey's room, he was sitting in his swing, in his bat costume with "sweeties" or the packets oral sugar water they give him to calm him down, and a sign on his swing that said trick or treat! As much as we didn't still want him to be in the NICU for Halloween, Becca and the rest of the NICU staff made it quite enjoyable. We then loaded them up in the stroller (Grey in his carseat for the first time) and they went around to the 2nd and 3rd floor NICU. The kids got sweeties, and ready made Neosure (their formula) for treats. Owen even got a mini snickers bar he liked to hold on to and make crunchy sounds.
Grey REALLY liked to get out of his room, and walk around in the stroller. We are going to purchase a stroller he can have there, so we can do that more often. He was so good, and really seemed to enjoy it.
This week is we are hoping his liver numbers go down, and we will have him off oxygen. Hopefully we will have him home in time for Thanksgiving!!!