I did not retaliate when I got nasty comments about my decisions last summer. I knew that some people would not agree. But I will absolutely not sit back while anyone tries to judge the time, effort and love I have given my son during the past five grueling months in the NICU.
I have written dozens of positive upbeat posts about what is going on andmaybe two that have shown my cracks emotionally. You call that whining? I'm sorry that I was worried about how Dylan would do without his feeding tube when the last attempt was a total failure.
When I walk in the door of the NICU each morning, I greet everyone by name. Because I know every single person's name: receptionists, respiratory techs, doctors, nurses...even the janitor. I know all about his 3 kids. Today is his daughter's 21st birthday.
They have been part of our family for nearly half a year.
Out of the nearly hundred nurses that have taken care of my son over the past 5 months, there are 3 that I do not like because of either their nursing ability or manner in dealing with me and/or Dylan. Most of the nurses are great and there are even a few that love Dylan almost as mich as I do.
The nurse I had yesterday had Dylan one time before. She's rude and I think she hates her job. Very sad for a NICU nurse. I was really upset to have her on a day when I needed extra support. But instead of ignoring her or sulking, I tried to engage her in conversation all day...talk about her dogs, her family...because she was my son's nurse and I wanted her to treat him well.
One comment said that I need to advocate for Dylan. I do nothing but advocate for him every minute of every day. I've spoken to every level of administrator from charge nurse up to make sure Dylan gets the best care possible and that includes nurses who know him. I ask every single person that steps in our door if they have any ideas for helping him eat. I do my own research then ask the doctors what they think about what I find.
When the OT was in our room about 6 weeks ago and as we were talking about what to try next for feedings, I asked if we could graph the amount he has been taking over time. How can we truly understand his patterns without seeing a graph? Apparently no one had ever tried this before and so the nurse and the OT spent the next half an hour trying to figure it out in the computer system. It worked and provided us invaluable information.
It caused us to make a feeding binder for Dylan to document each different variable at each feeding (beyond what is charted normally). The binder has helped us to figure out the connection between his bowels and feedings as well as which nipple/bottle combo works best and has helped every to really focus on feeding when they have Dylan. I say us because I am absolutely a part of the team that is figuring it out and offering suggestions.
I spend all of my waking hours thinking about how to help my son.
When I am not at the NICU, I'm typically pumping, eating, sleeping, taking care of the dog, or doing Dylan's laundry. That's in addition the the two hours I spend driving to and from the NICU two times each day. There is not time for much else and sleeping in the NICU would make me ill-prepared to deal with each day's challenges. I would absolutely prefer to do all of his feedings, but he has loving professionals that share the duty and I am grateful for them.
And you can't compare this to staying up with a child at home. You are at home. When your child sleeps, you can shower or do something productive around the house...or sleep. I can't do those things in the NICU. And it's not like there is a bed...it's a pull-out chair. It's not realistic to sleep in that environment for 5 months so I do it when it really matters, like last night.
My entire life revolves around my son. My husband and I cover almost every single feeding from 9 am to 11pm. So go ahead and disagree with my reduction, but find someone else to criticize for not taking the very best care of her son possible.