Wednesday, October 12, 2016

Nutrition - September 30th, 2016

Today we called the nutritionist to talk to him about the next steps that we could take to help you with your feedings. The last appointment we had was with GI telling us that you may be a volume limited child. We were excited to talk to him and finally be able to decrease the volume so that you may take more by bottle.
I called and was so surprised to find out that the number was a direct line to the nutritionist. He answered and I told him who I was and that we saw GI and told him that they suggested we decrease the volume and increase the calories. He looked up your information and then told us that he wanted to increase your calories from 22 calories to 24 calories. He told us that we now needed to mix 1 tsp of formula to 90 ml of breast milk. He said to keep feeding you every 3 hours, with the exception of midnight. I was happy about the changes, and so was daddy when I told him what we were doing.
After I got off the phone, I got to thinking. I never asked how much you should be getting every 3 hours, and just assumed it was 90 ml. It didn't seem right to me after calculating the calories. I called back just to make sure I knew what we were doing. It was a good thing that I called back. He wanted you to still take 110 ml every 3 hours, but now 24 calories. So, after what GI said, he said that he wasn't going to do that, and he thought you still needed more calories. He said to stay where we were for 5 more days, then start the 110 ml with 24 calories for two weeks. After that, we could call him and see what to do from there. Daddy was not happy with this information, so he got on the phone to talk with the nutritionist. The nutritionist explained that he wasn't backing down on the volume because he would have to increase your calories to over 30 in order to have you get the intake you needed if we decreased the volume. After talking for a bit, we agreed to do 2 weeks of 24 calories, and then we would do 2 weeks of 27 calories. After that, if you are still doing well, we may be able to go down to 6 feeds a day instead of 7 feeds a day. Hopefully then you would be hungrier by the time we had to bottle feed you, and then maybe you would take more by mouth. I guess we will have to see how you do.
We decided that we weren't going to wait another 5 days doing what we have been doing, rather, we would start the new calorie mixture today. Hopefully things go well, and we can get closer to getting this tube out!
We love you so much and love seeing how well you are doing. We still need you to eat more by mouth, but you are doing so well with everything else. We are praying that your eating will go well and we can find something that works for you soon.

NICU Reunion - September 24th, 2016

Today we went to your first NICU reunion! We knew that there would be rides, face painting, and games and that you weren't big enough for them, but we wanted to see some of the nurses that we haven't seen in a while. We didn't know who would be there, but we hoped that we would see a lot of the nurses that we spent so much time with.
We got there and walked around for a little bit. We didn't really see any of the nurses we knew. We then got some pictures taken, and then we were going to leave if we didn't see any of the nurses. Finally, we saw one of the nurses that we loved, and spoke with her for a while. After that, we walked around a little more, but didn't see anyone else that we knew. Since you weren't big enough for anything yet, we decided to leave.
I do have to admit that when we started walking towards the hospital, I started crying. It brought back so many memories. Daddy looked at me like I was crazy, but I am sure deep down he understood. It was definitely hard going back there, but it was nice seeing one of your nurses!
Tomorrow, you are 7 months. I have no idea where the time has went. All I know is that I am so blessed that I have been able to be home with you for the last few months. I really think that working with you every day has helped you in so many ways. We love you so much, and although we are sad at how fast time is going, we are so happy to see how well you are growing!

Sunday, October 2, 2016

GI Appointment - September 21st, 2016

Today we had our GI appointment. When the doctor came in, she said that you looked really good. We love hearing that. She asked us a bunch of questions and then we told her what we thought and she told us what she thought. Basically, she said that she didn't think it was necessary right now to do any testing or anything because you only throw up once or twice a day. She said that if it was something wrong with your anatomy, then you would be throwing up more than that. She said that she didn't see why we couldn't try lowering your volume and increasing the calories for a couple weeks to see if that would keep you from throwing up. She said that you may be a volume limited kid. She said that she would notify nutrition and let them know what she thought. We made a follow up appointment for November, and she said that if we didn't need it that we could cancel.
I was happy about that because that is what we thought the whole time. We have to wait for the nutritionist to get back from vacation before we go ahead and figure out what to do next. Maybe we are finally getting somewhere!
We also had PT today. She is really impressed with what you are doing. She said that you are doing very well, and you keep improving each week. We have to change our time for next week because she is going to attend a field trip with her son, but at least she still gets to see you.
Tomorrow I am shipping out some of my milk to donate to a milk bank that uses it for human fortifier for preemies. I am so happy that I am able to donate so that other preemies like you can get the nutrition they need to grow big and strong. I will donate as much as I can, and I will make sure that you still have enough to get you to your first birthday, and possibly one year adjusted.
This weekend is the Virtua NICU reunion. I am really excited to go. I hope that we an see a lot of the nurses that took care of you. I can't wait to attend the reunion when you get bigger so you can participate in the activities that they will have!
We don't really have too much more going on until your weight check on October 5th. We also get to see your Neurosurgeon in October as well. Hopefully this time when we go we actually get to see him, and not someone else. I may call just to see if we can make sure to see him.
We are enjoying spending tons of time with you. We love seeing you learn new things and meet new milestones. You are such a good baby - you are always happy, you sleep through the night (with the exception of us having to wake you up to eat), and you just make us so happy. We love you more and more each day. We can't believe that you are almost 7 months old! Time goes by so fast and I am blessed to be able to spend these months at home with you. We love you, handsome!