Monday, March 14, 2016

Just When You Think Things Can't Get Any Harder - March 14th, 2016

When I came in this morning, the nurse told me that they were holding your feeds because you started throwing up at midnight, and then again after your next feeding. I did not want to do Kangaroo Care since you were sick (of course I really wanted to do it, but I didn't want to make you feel worse). She had changed your diaper at 8:30 am instead of 9:00 am because she was already in your isolette and wanted you to be able to rest after.
This week we were told there would be a new doctor on, as the doctors rotate on a weekly basis. Our primary doctor stopped by and asked if I had any questions and I did. I asked what would happen if you did not stop throwing up and she said that they stopped your feedings so that you would stop. What came next I was not ready for at all. She said that the doctor that was on today would most likely order an ultrasound today instead of later in the week because throwing up and having episodes are symptoms of pressure on your brain. She told me that the doctor on today would explain everything to me.
As I was waiting for the doctor to come around, I was hungry and tired so I went to the Ronald McDonald room to grab a snack and some coffee. When I came back to your room, the doctor was there and started talking to me about what was going on with your care today. Again, nothing that I was prepared for. She said that she wished she wasn't meeting me for the first time and having to tell me any of this. Anyway, she said that over the weekend your head circumference grew 1.5 cm which is way too fast of a growth for a preemie (or any baby for that matter). She said that she had already notified CHOP about you and that there was a possibility of you being transferred there for the surgeons to evaluate you. She ordered a head ultrasound for you and told me the different options that the surgeons would think about regarding the fluid in your brain. One of them was a LP that they could do in the NICU. If it helped you, they would do it again if there was increased pressure. If it did not help you the first time, then they would not do it again. Another option would be something called a reservoir to drain the fluid. They usually do not put a shunt in until babies are larger, so they would try other avenues before placing a shunt. She also said that another doctor would be speaking with us about everything.
As I was on the phone explaining stuff to daddy, the other doctor had come in to check on you. He told me not to get off the phone. After I was off the phone, he came in to talk to me about you. He basically said the same things as the other doctor, and also said that he would be doing the LP on you at 11:30 am. He said that the procedure takes about 15 minutes, and about 14 of those minutes are just getting ready and cleaning up. He also said that he would like to take about 10 cc's of fluid because he knows that babies can handle that. I told daddy about it and he said that he would come to the hospital to get the results. I went back to the Ronald McDonald room and had a snack and some coffee since I knew it would be a very long day for us. Daddy came and I explained everything in more detail to him. We came back after about 30 minutes had passed and sat with you. We waited for the doctor and he said he was only able to get 1 cc of fluid out, which meant that your brain was not communicating well with another part of your body (I forget the part he said). He then had the ultrasound done and as we were waiting for the results we stepped out and got some lunch since we had not had anything to eat all day. When we came back the first doctor came to speak with both of us. She told daddy about everything she explained to me earlier in the morning. She then said that you would be transferred to CHOP in the morning to be evaluated further by the surgeons. She said that they might not do anything until you are off of your antibiotics on Friday, or she said there is something they can do while you are still on your antibiotics. In any case, she said she has no idea what they are going to choose to do, but she just wanted to prepare us for what may come. She said sometimes babies are sent over to CHOP and just placed under observation and then go back to the NICU. We asked if you would be coming back to the NICU after the surgery (if you had to have surgery) and she said it is a possibility.
We came again for your 9 pm care, and I really wanted to do some Kangaroo Time because I have no idea when I will get to hold you again. This was my 10th day in a row holding you, and my 13th time holding you ever. You had quite a few episodes while on me tonight. The LC came in to speak with me and she said she was coming in because we were being discharged in the morning. I had to take home all of the milk I pumped for you. The doctor came in so daddy could sign a paper and we asked a few questions. Our nurse told us that we had to pack everything up and bring it home. This was such a difficult thing to do. I felt like I was leaving the very place that I got so comfortable with. I loved the NICU nurses, as they treated you like their own. This was my home away from home and your first home. Just thinking about having to transfer you to another hospital and possibly having surgery just breaks my heart. I wish I could switch places with you. We are looking into places for me (possibly daddy) to stay in Philadelphia so that we are close to you while you are at CHOP. We will be there every step of the way buddy.
One positive about today was that you lost your umbilical cord. You now have a cute little belly button!
Mommy and Daddy love you so much - you are our little hero. We know you are going to pull through. Stay strong, Mason. We love you!