Do you know what drives me up the wall? When people try to tell you things about situations they have absolutely no idea about! My daughter is a 28-weeker and spent three full months in the hospital. Early on, she developed a serious lung condition (which has thankfully resolved), and I didn’t Google the condition once. My unwillingness to research her condition still prompts people to tell me how they absolutely would have searched online to learn the ins and outs about the situation.
Let me assure you, I’m quick with my Google finger – I honestly Google more than most/all the people I know – but there was NO way I was going to ask Dr. Google about my daughter’s condition. Do you know why? Because I’m not a doctor, and neither is the search engine (and neither are the people who tell me they would be scouring the internet for answers).
Here’s the thing – unless you’ve been in the situation, you don’t know it. Even if someone tells you about it as it happens, unless YOU are living it, you don’t know all the details and don’t know what it’s like to walk in their shoes.
I really trusted her medical team and told them up front that I had zero plans to research the condition, and that I was relying on them to tell me what I needed to know. I think they appreciated that. With a preemie, all bets are off, they make up their own tiny, strong-willed minds and they lead the charge. There were many times when my daughter would have horrible chest x-rays and lab work, but she would be tolerating things really well. Her doctors told me routinely that they don’t treat the condition, they treat the baby. Web searching doesn’t allow you that freedom.
When you start searching online, you end up with things that are either very concrete: “if this happens, then that means ___, and it should be treated _____” or very vague: “if you have ___ and ___ and ___, you could be facing certain death, or perhaps the common cold.” You also find all kinds of awful statistics, which may or may not pertain to your situation. When your baby is in the hospital, you do NOT need that kind of craziness in your life! Believe me, there will be plenty of craziness without the internet!
There would have been no value for me to research and try to manage my daughter’s condition because I’m not a medical expert, I don’t have years of experience treating babies with her condition, and I don’t have the medical background to know all the intricacies about how babies, equipment, medicines act/react etc. Also, the doctors don’t need a self-appointed internet expert sitting in rounds telling them (the actual professionals) what is best for the baby.
I am in no way saying to not be involved, I’m saying quite the opposite, actually. But people tend to get all high-and-mighty as if not researching online means not being involved. For the record, they are wrong.
Do you know what actually was valuable? For me to attend rounds each day, to ask real-life medical professionals specific questions about my baby and her situation, to take notes, for me to be at my daughter’s bedside for hours and hours everyday, and to call to check on her in the middle of the night. I was always in the know, and I always had the medical information that pertained to her. I always knew what her medications were, when/how they were administered, etc. I knew what her normal behavior was, what was working for her, what each person said from one shift to another. I was her continuity and I was her advocate, and that is what mattered.
The moral of this story is that in situations like this, if you’re not the one going through it, you probably don’t know all the details, so don’t judge and don’t tell the people experiencing the situation how you think you would handle it. That was definitely a lesson I needed to learn! If you would have asked me about all of this two years ago, I would have said that I’d be searching online, etc., but boy was I wrong! You have to let people live their lives their way, and when things get tough, be there, hug, smile, and lend an ear (rather than lending an opinion without being asked).