Yesterday was a very busy day for Grayden. He started the morning off with his VCUG test at 8:00am. The results from that were the best they could be. He is voiding on his own right now and there is no evidence that his bladder is refluxing urine into his kidneys. He is also completely voiding all of the urine out of his bladder on his own. The Urologist, Dr. Carr, said that he would just need to be followed by our urologist back in Michigan to make sure that nothing changes until he sees him again here for his follow up appointment when he is 12 months old. So for now we are not going to need to catheterize him, which is great news!!
Grayden also had his MRI done on his spine and his brain yesterday. It was a long two hours and they did have to sedate him, but he tolerated it well. He needed to have a little oxygen when he came back to his room until he woke up from the MRI and his temperature dropped a little bit while he was down there, but after a few hours he was back to his "old" self again. The nurse practitioner went briefly over the MRI results with us today, and again everything is as good as it could be. The MRI of his brain showed no evidence of any Chiari Malformation. This is the part of the back of the brain (hind brain) that is pulled down into his spinal column as a result of the spina bifida. He did have a Chiari prior to the fetal surgery, but as a result of the surgery it has reversed itself back where it should be in his brain. What this means is that the spinal fluid is able to flow down through the spinal column as it should, and hopefully he will not need a shunt. His ventricles are still enlarged however, but they are saying that they are only mild to moderate at this point and because there is no longer a Chiari they are hoping that there will not be a build up of any more fluid in his brain. We will continue to need to monitor this however, just in case.
We met with the nurse practitioner and she said the only thing keeping us here at this point is Grayden's eating. He will need to be able to take everything that he needs to by mouth, either breast or bottle, prior to us going home. They do not feel comfortable sending us home with a feeding tube because we have to travel so far. So we are going to continue to work on breast feeding while I am up at the hospital and if I am not here for one of his feedings they will attempt to feed him by bottle. We are told that sometimes premature babies do better with a bottle because it is not as hard of work for them. Today so far he has taken 18mL at 9:00am and 14 mL at 12:00pm. I am encouraged though, because he seems to be making steady progress in the right direction! He needs to make it up to 50mL.
Austin and I are looking forward to coming home and seeing all of our friends and family, especially Zander, but we are also trying to soak up our last little bit of time in Philadelphia (even though most of our day is spent at the hospital). Philadelphia is now our home away from home and we feel very attached to this city. A lot has happened here and it will be a little bittersweet to leave.
Boulder Ridge Zoo
1 week ago