Today has already been very busy. First though, I'll recap yesterday. He had his shunt surgery and Dr. Puccoini said it went well. He came back and was very, very tired. We spent sometime with him yesterday, and my mom and Megan and Mason were able to come see him. My mom was able to hold him and so did Megan. He was pretty wiped from the surgery. We went to my room for the night around 10 pm and other than pumping every 3 hours; got a good nights sleep (for a hospital).
This morning, we were up around 7 am to get ready to see him. Dr. Bonebrake and the OB resident, Dr. Grossenburg came through along with another resident. The nurse came through and did her morning assessment; and we were off to see Matthew. I was pretty sore this morning, but have been feeling better each day.
We got to Matthew's room around 8:30 am. The neonatalogist had ordered an echocardiogram (they heard a slight murmur) and the tech was there to do that. As soon as she was finished, lab was there to draw some more blood. His poor little heel looks like a pin cushion :( As soon as she was finished, ultrasound was back to do an abdominal ultrasound. They also had a new machine and wanted to test the "new functions" out on Matthew. So it took EXTRA long to do his ultrasound.
Let me back up and tell you why they are doing all these tests. The neonatologist has consulted with a geneticist to look at Matthew. The geneticist ordered this abdominal ultrasound. The neonatologist told us this morning that in addition to having a heart murmur, he also has two vertebrae that are "butterflied" Basically the vertebrae should be a rectangular shape, but 2 of his are shaped more like a butterfly. No concerns for now, but it'll need to be followed by a orthopedic doctor as there is a chance he could have some some scoliosis. Also some of his blood work that looks at his thyroid was slightly off, so they had to draw more :(
Then this afternoon, the results of the abdominal ultrasound showed that he has some abnormality to his kidneys. He for sure has one kidney and thinks that maybe the other kidney is fused to it. This is very perplexing to us, as I've had a gazillion ultrasounds and every one showed that he had two kidneys. We're hoping that maybe this ultrasound is wrong; but regardless, they will be getting a kidney doctor also involved. The neonatologist also wants to do a MRI tomorrow to look at some different areas of his brain to see if /what damage has occured. He is also having an eye doctor come check his eyes to see if his optic nerve has any damage. Both Steve and I are very frustrated today. We just want them to quit looking for things wrong with our precious baby boy. To us, he is perfect; hydrocephalus or not. If he's blind; so be it. If he has scoliosis, we'll deal with it. We just feel like every test they do, they find something more. If it's a genetic abnormality, so be it; it won't change the way we love our baby. In a way, we understand the Dr.'s point that if we can collect all this while he's here, we can save ourselves a lot of appointments down the road, but it doesn't make it any less frustrating.
We did get some good news today; his echo (heart ultrasound) is normal and we get to try to start feeding him today. He, on the other hand, is not one bit interested yet. He is still very groggy. so we'll see how today goes; if he doesn't take to it, they'll place an NG tube (a tube that goes in his nose and down to his tummy)tomorrow and start giving him some of the milk I've been pumping to him, so we can discontinue his IV. We'll continue to keep trying to feed him orally, but the tube will supplement what he doesn't get. Steve and I are both ready for his IV to be gone. We're always worried about pulling on it.
He'll also have the MRI tomorrow, so they won't feed him for a while before that; because he will need to be sedated for the procedure.
Well, I'm exhausted. I don't know if I'll update anymore today, but will try to tomorrow.
I'll leave you with a couple of pics of our darling!
Megan gets to hold Matthew
Mommy and Matthew enjoying so "skin-to-skin" snuggle time
Daddy and Matthew