Day 231 - Our Favorites from the NICU Visit James

Wednesday, August 18th, 2021

⏰ James randomly woke up at 1:45am and stayed awake until 3:30am. He needed to get suctioned and was drowning in secretions. Mom dressed him since he was freezing and his trach was rubbing on his chest. Also his gauze had come out from his trach and his G-tube was leaking. Not to mention changing both diapers (one from his G-tube). He was awake because he had a visitor on night shift! 

🫁 It was James' favorite Night RT! It was so nice of her to take the stroll over on her break to see James before he goes home. At first Mom was like who is this person at the door who is not our nurse. It's pretty dark in the room. But it was a very welcomed surprise! Also we are ecstatic to hear that she will be submitting her lullaby along with another RN or two 😉. I can't wait to see the video! James always looks so much bigger to people that haven't seen him in a few weeks, sometimes it's just a matter of a few days! He is definitely turning into a little boy.

📞 Mom talked to the staffing agency today while trying to console James. They said they have a nurse who is only interested in working Sundays for a 12-hour shift. Not ideal since the times we really need help is to get James to and from his doctor's appointment during the week. She just ended her contact with another family and was possibly let go, which doesn't sound great. Mom has to schedule an interview with her on Sunday at the house, due to covid. As a recruiter mom has just a tad bit of experience interviewing people, so it should be interesting! 😆

👩🏼‍⚕️ In the afternoon, we received another very welcomed surprise visit from James' "Primary" NICU Doctor. It was so nice of her to stop by to see James before discharge! She is definitely our favorite doctor overall! In the past, Mom had several encounters with horrible bedside manners while her dad was passing that shaped her mindset. Well this Doctor really changed Mom's opinion. We always felt like she was open to listening to us, never felt rushed, super knowledgeable, and even did additional research on topics that Mom had questions about. Taking the time to draw diagrams and have conversations versus lecture us! Even on days that she would not be on James' service she would stop in to check on him. THIS is one of the easiest ways to determine who the good nurses and doctors are. Those that really care about their patients! Really hoping that we can add her to our lullaby video montage! ❤️ Would absolutely love to have his Doctor!

If not for her Mom would not know the consequences of diuretics, James would be on several of them right now causing a long-term damage to his bones. Mom advocated for James the past 2 months here in the PICU for him to not be put on diuretics and it was a back and forth daily argument. Thank goodness because he is doing better than ever and has never needed to be on them in order to tolerate the ventilator. 

​Drooling and blowing bubbles is common in babies during the phase of development when getting what they need is centered on the mouth. This becomes especially apparent at 3 to 6 months of age.

He doesn't like when people watch him watching a video.

A syringe that had been left out too long. The fortification of the breast milk separated as you can see the bottom is more dark tan in the top is more white. Ended up tossing 5mls that would not push through with the pump. It was crazy. Mom tried so hard just to push the formula manually into the sink and it was like cement. 🤷🏻‍♀️

👩‍👧‍👧 Late night, one of Lindsay's aunts messaged her that she was sending over a video of her Philly family singing the James Weston Lullaby. Oh boy it's awesome! Seventeen people including aunts, cousins, second cousins, third cousins! What's so funny is that this is just a very small group of Mom's side of the family! James is now part of the cousin squad; Cousin #163. Yes a matching onesie needs to be made! Please check this out on Facebook so that way if you are reading this and you have not submitted your video yet you can get an idea of what others have done. It only needs to be a few words, you can pick any line in the song. And again if you are reading this, we want your video! All of his supporters! ❤️❤️❤️

P.S. If you read the blog and are supporting James through his journey we would love you to participate in our video montage of everyone singing his lullaby. Please see the James Weston lullaby post for more details. ❤️

P.P.S. Thank you so much for the lullaby submissions so far! It's so exciting to have all of you be a part of something so special! 😭