Last week we increased your feed from 105 to 110 on the 16th. You got sick at your 3 and 6 am feeds, so that meant that it was too much for you. We backed down to 105 ml and that is where we would stay. You had PT on the 17th, and you did well. You are doing so well with holding your head up on your own! You went to another party for a friends 30th yesterday, and you slept through most of it.
Today, we went to church for Delaney and Nora's baptism. They were your NICU neighbors at Virtua. We went to a nice lunch at their house after church. You met a lot of new people, and met tons of people that have been praying for you! It was nice to meet so many people who have been praying for you since you've been born.
At lunch, we fed you and you got sick after. Threw up your whole feed. You have been doing this a couple times a day for a couple days and we aren't sure why. You have been screaming during your tube feeds when you are awake as well. You also have developed a few more dots on your left leg which are called petechiae. This also worries me. I decided to contact your pediatrician to see what he said. He told us to go to the CHOP ER. Guess we weren't going to the second party that we were supposed to go to today.
Off to the ER we went. We went at about 4 pm. They asked what was wrong with you and I said that you were throwing up, screaming while taking your NG feeds when you are awake, and you had petechiae on your legs. She asked what medical problems you had were and I started with hydrocephalus and she said next time just say "hydrocephalus and vomiting" and that will get you right back. So we were taken right back and they came in to get your medical history. The NP took a look at you and then said that she had to talk to the doctor and then the doctor would be in. The NP counted 5 petechiae. The doctor came in and took a look at the petechiae, and said that they were going to change your NG tube because it sounds like it might be irritating you. I asked if they could put it in your right nostril since it had never been in that nostril, and because we can't get it up there. She said that the nurse would gladly do that for us.
What seemed like hours later, you got an IV in your arm just in case you needed any fluids, and you also had blood taken. The nurse did your NG tube and had a little bit of a rough time getting it in your right nostril. The first time she got it in, she had to take it back out because you were coughing which meant that it wasn't in the right place. She gave you a break because you were screaming. She came back in a little later and put it in again and checked to make sure it was in the right place. Daddy taped it to your face because the nurse wasn't doing it the way we did it at home.
Meanwhile, one of your NICU nurses came to visit us! We just love her. It was so nice to see her. She said she didn't even recognize you because you have gotten so big! She couldn't believe that you are almost 6 months!! She met you when you were just 3 weeks old. She definitely was a nurse that kept me positive and always looked after not just you - but me as well. She was there for me when my fears came true and they had to bag you because you weren't breathing. As I cried, she hugged me. No words were needed.
A little later they came in and told us that your blood work looked great and that we just needed to feed you and if you kept down your feed, we could be discharged. It took them forever to come around to heat up your bottle. When we got your bottle, it was cold. You were starving, so it didn't really matter to you. You downed all 30 ml like a champ! Waiting around for someone to come in to heat up the other 70 ml of your feed took forever as well. (We decreased your feed from 105 to 100 just in case that was the reason for you getting sick.) After we finally had your milk heated up, I asked for a syringe and a line, and the lady went searching and came back with the line, but that didn't fit the syringe that they had. Luckily, I looked in the diaper bag and I had an extra one. We would probably still be there if I didn't have an extra one on hand!
We fed you by gravity and no one even came in to check on you. You finished your feed and just laid there for a little bit. The NP finally came in to ask how you were doing and we said you finished your feed and that if you were going to get sick, you probably would have by now since you were laying down. She said that she would go to get the discharge papers ready.
Meanwhile, I asked your nurse about an hour ago for a pump because I was full - she went looking for a pump to feed you your milk, not a breast pump. Maybe next time I need to clarify! She had someone go grab one so that I could pump while the discharge papers were being prepared.
Finally, daddy signed all the papers and we were able to leave. They said to just watch the petechiae, but they couldn't find a cause for it. They did contact hematology who were not concerned.
At about 11 pm, we were able to go home, just to get up early to be back in the morning for our 8 am urology appointment.
We are so happy that nothing is wrong! Now we just have to make sure you aren't screaming and/or vomiting with your new NG tube, and we have to watch to make sure the petechiae don't increase. We love you, bub!
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