Negative Start, Positive Ending

Late post tonight! I got caught up chatting with some of the gals on the floor. Our little heart buddy, Cohen (mom is Stephanie), is getting discharged on Friday! He has been in the hospital since birth, so it will be a big day for them! Faith (mom is Jamie) is doing GREAT and maybe discharged to the Ronald McDonald House by the end of the week, or early next week! They have been on quite a journey for almost 15 months; so, it is nice to see these heart warriors moving forward in life!

I have to admit that I started my day off kind of feeling negative. I am not really completely sure why. I think it is a mixture of reality slapping me in the face, feeling like our recovery isn't going the way I expected it to and maybe I have the winter blues. I got here in the morning with reports that Nolan had a good night. He still looked very puffy and was on the cranky side; not as bad as before, but still clearly agitated at little things. He will get himself all worked up to the point he throws up. Now, I think this can be common for babies, so I am not too concerned. But, I ended up having to change his bed and clothes about four times through the day. Needless to say, I got some laundry done today.

Because of the puffiness, they continued the Lasix. I do think it is helping very slowly. From the beginning of the day to tonight I can actually see his eyeballs. So, maybe by the morning things will look more normal. He was on two antibiotics; one treating the culture that came back positive and one treating the other culture that has not come back yet. They started him on a new antibiotic that will treat both cultures, so he will be on that for, I believe, 48 hours via IV. We should know about the second culture tomorrow. His biopsy results came back at 0 rejection, which is great! His next biopsy is scheduled for February 21. So thankful!

As the day progressed, Nolan's overall demeanor seemed to improve (as did mine!) He is more consolable, happy, smiling, giggling...so, I know he is feeling better. We worked with speech therapy, and he allowed the therapist to stick a spoon in his mouth. He actually seemed interested in eating (no food was on the spoon, we were giving his belly a break). During PT he was having moments of sitting on his own, moving his core left to right, grabbing things in front of him and rolling to his sides. He is really doing great. I had a meeting with our transplant coordinator to start reviewing our "binder." It is a bit overwhelming and scary, but, it is what our life will be for the first months to a year until it just becomes our LIFE.

Tonight I had ANOTHER wonderful visitor! One of my old coworkers from SH and a good friend, Bridget Stevens, stopped by. She is expecting a baby boy on May 10, so it was great to see her and that belly bump! AND she brought me a Primanti's sandwich...which is like THE SANDWICH shop of Pittsburgh. We had a lot of good laughs, so my day of negativity ended on a positive and happy note. Thanks, Bridget!

I must get to sleep so I can be good for my boy and get some work done tomorrow. I am anticipating us starting back to bolus feeds again, if Nolan is ready. He definitely works on HIS schedule, no one else's!

#nhos
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