Recently, I shared a story about Jason's Deli and a lady asking to touch Olive. I quickly responded "if you have clean hands!" I got a lot of positive responses and feedback, however a few responses hurt my feelings more than they probably should (they have been removed as I do not allow negativity on my page). One in particular made it seem as if my personality is the reason I would decide to say this. While this may be true in some ways, it's not the total truth.
I have also had some well intended responses as "you won't be so protective forever" or with my "second child..."
I guess my reasons are many, but here are a few reasons these reactions/statements aren't exactly helpful:
When most of you had your children, you went home within a few days or some even the same day. 1 in 8 babies are born premature, however I believe this includes up to 36 weeks. Most 36 week old babies don't need a whole lot of time in the NICU. As the weeks of gestation are fewer and fewer, the NICU stay typically gets longer. Our total NICU stay? 149 days. 2 days shy of 5 months.
That's nearly 5 months of sleeping at home while my child is being taken care of by someone else. Someone highly trained, mind you, but I can't tell you how many times I got a call in the middle of the night letting me know "there is nothing wrong but we have decided to run tests because Olive *insert scary reason here*."
Olive has also barely been introduced to germs as hospital germs are considered "bad". She was never given a washed and reused pacifier. If her clean outfit that was about to be put on fell on the floor before it got on her little body, it went in the dirty clothes.
3 procedures (1 major, 2 minor). She has been on oxygen and fed by a tube her entire 6 months of life. She has had more blood transfusions, "heel sticks", IV's and so on and so on than I have had in my life.
Currently she cannot have ANYTHING by mouth as she aspirates and can choke to death or get pneumonia. Even just "a little bit" of something is extremely dangerous.
For 149 days anyone who came in to visit her had to "scrub in," or in laymans terms, thoroughly clean your hands and arms up to your elbows. If I was having an allergy or sinus problems I had to wear a mask around her. In a lot of cases I was questioned multiple times by various staff about whether I was well enough to see her.
Many days I couldn't hold her for various reasons. I can't even begin to tell you what it feels like to walk in to see your daughter and there are doctors, nurses and other staff surrounding her tiny body.
I can remember a day when there were 2 times I tried to hold her and each time she went completely apenic. No matter how many trained staff are around, seeing your tiny little girl turn blue is terrifying. I remember crying and thinking "I just want to hold my baby." This wasn't the only time this happened, but I think it was the first of many times I cried.
Ever since Olive was 6 weeks in the womb she has fought. From one complication to another we stuck it out. At 26 weeks her life was at a place that she would not have made it had she not been born. It completely broke my heart that I could no longer protect her. That she was now on her own.
So now, what I can do is, I can fight for her. I, along with her daddy, can be her biggest advocate. I proudly go into her doctors appointments with a giant binder and write down everything they say. Even tough her team (yes, TEAM) of doctors communicate with each other I still tell them what I know and what each doctor says.
I spend a lot of time on the phone trying to sort out everything she needs. Any extra support helps and I am always willing to at least try to get her the extras.
We ask questions. A lot of questions. When one doctor gives us a so-so answer, we ask another.
When you say things like "with your next one..." know that right now thinking about "the next one" doesn't even cross my mind because I am enjoying my extremely strong little girl. I am processing the last 12 months and thanking God each day for our beautiful, HEALTHY daughter.