Monday, May 23, 2016

Back to CHOP We Go - May 23rd, 2016

This morning Grammy and Poppy had to go back home. I came at my usual time and did your care. Speech came at 8:30 to work with you. She said that all they were going to do for now is to do pacifier dips (putting two drops of milk on a pacifier and giving it to you) for 15 minutes. They said you need to practice coordinating your sucking and breathing. She also said that sometimes your suck is uncoordinated, but you have a strong suction. She said that she would be back again at 11 to do the same thing to see how you do. This time your RR was high when you sucked on the paci. We need it to be much lower before feeding you through a bottle.
I held you for a while after speech worked with you. I put you in your bouncer at about 10 and went to the Ronald McDonald room for a snack (which there wasn't any). I then came back and sat with you for a bit. The NP came in and said that she was glad to see me. She said that the team was talking about the next steps for you. They were all in agreement that if CHOP would do the swallow study before 40 weeks, that we would be sent to CHOP. They said that they (Virtua) wouldn't do anything before 40 weeks and they didn't want you sitting around if you were able to get the study done earlier. They said that the doctor was going to call after lunch, and they would let me know. About 10 minutes later, one of your neonatologists from CHOP came to see you and she said that she didn't think CHOP would do the swallow study earlier, so we would probably stay at Virtua. The doctor was still going to contact CHOP just incase.
We did your care early so that speech could work with you again. This time you were more tired. You didn't suck much, and I saw you do some of the same things you would do when we tried breastfeeding. The SLP said that this is all we can do for now, until you learn the skills needed to bottle feed. She stopped earlier than the 15 minutes because you wanted nothing to do with the paci anymore. She told me that she has learned what you can do, and so now it was my turn to do the paci dips, and I could do them without her in the room.
As I was talking to our neighbors (they went home today and I was so excited for them), the NP saw me and said that CHOP said that they would do the swallow study on you. Back to CHOP we go. I cried, but I know it is the best thing for you. They said that since you are not an emergency case, that they could come whenever they had a chance. Which means you could leave in the middle of the night. They said you would go within the next couple days.
Daddy had a lot of questions about why you were being transported back if they could do the swallow study at Virtua, so we called in the NP to explain everything to us. She said that since you are so fragile, they wouldn't even feel comfortable doing the study with you at 40 weeks. She said that they think you will need to come home with an NG tube (which you have now) or a g tube (which requires surgery). CHOP would teach us how to take care of whatever it is you need to come home with. They said that sometimes babies get sent home with the NG tube to see how they will do, and after about a month if they still can't take food by mouth, they will then put in the g tube. We still have many more questions to ask once we get to CHOP, but for now that is about all we know. Just waiting on the transport team to come get you.
We went back to the hospital tonight to see some of your nurses to say goodbye just incase we don't see them again.  You now weigh 6 lb., 4 oz. The nurse said that the pre-cert will take 24-48 hours, so you may go tomorrow afternoon or night to CHOP. We stayed at the hospital for a while, and we are exhausted!
We will see you tomorrow. We love you and are so proud of how strong you are. Hopefully we figure out what is wrong soon!!