Thursday, May 5, 2016

Happy 10 Weeks... - May 5th, 2016

I got there around 7:50 am to start our routine - pump, breastfeed, hold. We did just that. Except this time, you took your whole feed (43 ml) from me this morning. Everyone was so excited and couldn't believe how well you did. I was so happy that you did so well.
The doctors changed a few things for today. You are back on Vitamin D (never even knew you were off of it - no one at CHOP told me), your feeds are being increased to 43 ml (they made a joke after your feed this morning that you knew what it was changing to), and after three feeds of 43 ml, they were increasing it to 46 ml. You are also on high protein now.
Speech was coming for your 11:30 feed to see how you were doing. She tried to get you to latch, but you would latch and not suck. She checked your mouth and she said that you had a lip tie and a tongue tie. This would make it difficult for you to empty me she said. Since you wouldn't really do much, she said that she wanted to come back when you do well at 8:30 am.
We let you rest for the next feeding, and after that you had a cluster of episodes. You got really pale and I told them that they needed to check your hemoglobin because that is what you do when you need blood. They said they didn't think your hemoglobin would change that much from the 27th when you last had it done. I also noticed that your left foot was swollen a bit as well. We elevated the foot, and I convinced them to do a CBC. The results came back and your hemoglobin went from 13.9 to 9.4. They said that they didn't want to do anything yet (except put you back on oxygen), they just wanted to watch you for now. You had another cluster of episodes. When you got even more pale, I went out to find the nurse and told her that you weren't looking good at all. She went to tell the doctors and the NP came to speak with me.
The NP said that she didn't think that you had an infection because your blood work came back good. She said that she thinks what happened is that you worked so hard this morning getting my milk, that you just ran out of all your energy. She said that your color going is part of that too. She said that you needed to rest. If you were continuing to do this, the wanted to do a CBC again on Monday along with a RTIC. Then we would take it from there. I asked her if you could be silently aspirating and she said that you wouldn't show signs this soon if that were the case. She said that you would start to show signs 24-48 hours later.
Daddy came home from work early to see you. Your color was back to normal by the time he came. A little later, you had another cluster of episodes, and daddy got to see your pale face. Your lips start turning blue when you drop your heart rate, which obviously makes us very nervous. The had to use stim a few times to get your heart rate back up.
Just as we were getting ready to leave, you had more episodes. The nurse saw the worry in my eyes (I obviously didn't want to leave) and said that I could leave. She said that if she thought I needed to stay, that she would tell me. She says that you are just getting so mad that you cry and cry and forget to breathe. I asked her how the process is when I call in and she told me. She told me to call as often as I want.
I hope that you have a good night. We love you so much. Keep fighting, Mason. You are almost to the finish line. We just need to learn how to eat. You do great, just need to get some energy! I will see you in the morning - please rest up so we can have a great day tomorrow!
P.S. Two of your nurses from when you were first at Virtua came to visit you today! They said they loved taking care of you and that they missed you. They were so happy to see how much you have grown!!