The Talk

Monday morning, we walked into Nicholas's room to find the neonatologist, the nurse practitioner, the charge nurse, and our nurse in his room on their morning rounds. And they were discussing discharge. And they were setting a date.

We jumped into the conversation, and were surprised to hear that they wanted to order an echocardiogram for his murmur before he left. Excuse me? His murmur? Turns out he has a murmur and while they're not too concerned, they just want to take an look and make sure it's nothing they need to look at closer. Why weren't we ever told? Nobody could answer. 

It was decided that, barring bad news from cardiology, they would set a discharge date of Thursday - five days after his last Brady. He had some tasks he had to compete and so did we. 

First on the list, his car seat test. Emily had had to have one before leaving the hospital also because of her gestational age. He had to sit in his car seat for an hour, attached to monitors, and maintain a steady heart rate and a steady respiration rate. This was for safety purposes. He was fine when laying in his crib all day long, but a car seat was a totally different position. We were worried that he would fail because of the size of his head. We were worried that his head would drop and cut off his airway. Don't worry said the neonatologist. If he fails, he will just go home in a car bed. No biggie. Ummm except that...we don't have ROOM for a car bed that takes up two seats. Our family would be stuck taking two cars everywhere. We crossed our fingers that he would pass. 

We also had to do some things. We had to learn how to feed him through the g-tube. How to clean the site. How to clean the equipment. How to use the pump. What signs of shunt failure to look for and when to return to the hospital. What to do when his Mic-key button fell out and we needed to put it back in. How to give him medicine (can't take it by mouth!). It was overwhelming and a little bit scary. We had had nurses standing next to us this whole time. Now we would have to do this on our own. 

Usually you have to also room in with your child. You have to do everything on your own (feed, diaper, bathe) for a 24 hour period before discharge was approved. The doctor waived that for us because we had Zachary and Emily. It would have been a hardship and also, we already knew how to diaper and bathe a child. 

Now all we could do was wait for Thirsday and hope that Nicholas cooperated.