Wednesday, June 1, 2016

A Few Changes - June 1st, 2016

This morning when I came, I did your care and then fed you. You did great with no episodes and took 35 ml. You were wide awake and didn't tire out until about 30 min in. I was so proud of you! You fell back to sleep soon after that and then you had a hearing test. (You passed!)
As the lady was doing your hearing test, the doctors came for rounds. I stated again that you only were going poop once a day as opposed to every diaper and she said that they would try prune juice and changing your fortifier from 24 calories to 22 calories. Since they don't usually like more than one change a day, they asked which one I would rather have them do, but I didn't have a preference. In the end, they decided to do both changes. There was still enough milk made with the 24 calories for tonight, so instead of wasting it, they were going to use that and still give the prune juice. As soon as the 24 calorie milk ran out, they would change to 22 calorie. I asked about PT coming since I haven't seen them yet and they said that they would put in an order for that. They asked if I had chosen a place for medical supplies and I said that I had no idea that I had to do that. They said that the social worker was the one who calls insurance and makes sure that the place we choose is covered, and said they also help pick a place close to our home. They asked about our NG tube and CPR classes and I said that they were supposed to be today, but since Mason wasn't coming home this week, we changed it to Monday. You also started your iron today.
The nurse had me give you your vitamin D and iron today by mouth since that is what I would be doing at home. I also need to give you Zantac, but she said she was going to put that through your tube for now. You didn't spit any out which was good!
For your noon care, I did your care and then fed you again. I could tell you were a little tired, but still interested in the bottle. You took 24 ml, but also had one episode where your heart rate dropped to 67. You came back up on your own. That is the reason you are not ready to come home yet. The doctor said you can have heart rate drops and still come home, but you could not have drops that low.
Speech wanted to come for your three o'clock feed. Unfortunately, you were way too tired to even think about having a bottle at all. Speech told me to do whatever I would do (feed you or not feed you) and I wouldn't feed you since you wouldn't even open your eyes. No need to push you and you to have episodes. She said that she would come back tomorrow to see you.
We dropped your feed and then PT came. She said that we should start practicing tummy time on empty stomach (you puke when you get moved around after feedings) and to sit you up so you can practice holding your head up. She asked what I was worried about from a developmental standpoint, and I said everything. She asked me to be more specific and I said....everything. I am worried that you will be behind in everything. Who knows what will happen. I am definitely happy that you are getting all of the services now, but still nervous that something may be wrong in the future. You are already enrolled in EIS and a NICU follow-up program at CHOP. I'm sure you will do great since you have tons of specialists following you from birth to at least 3. Still, as a parent, I am nervous (and so is daddy)!I am sure that is expected.
We left after that. Yes, daddy came for your 3 pm feed and of course you wouldn't eat. That makes 3 out of the 4 times he came to see you for a feed , you refused. There is always tomorrow!
I called to see how you did for your 6 pm feed, but no one answered when I called. I will call again later tonight to see how you are doing. I can't wait to be able to just look over and know that you are doing well.
We love you and hope you do great with your feeds tonight and tomorrow morning. Pace yourself and you will do great. See you in the morning!!
Please pray that Mason's reflux related heart rate drops stop soon so that he can feel better. The sooner that is resolved, the sooner he gets to come home!