Thursday, February 21, 2013

No. I Refuse.

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.

26 comments:

  1. I'm so sorry you're having to deal with such negativity. The negative commenters on your last post were ridiculous. No one spends nights at the NICU for long periods of time like 3 months. You weren't expecting to have a 25 week preemie and he's doing amazingly well, thanks to you and your husband and the NICU staff.

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  2. Ugh! Stop it mean commenters! I'm so sorry you have to deal with that! Ridiculous!bthis bullying makes me so mad. How someone could think you are not doing an excellent job with these circumstances is beyond me. It's like they're lurking just waiting to criticize! This must be impossibly tough to live your life this way waiting for Dylan to come home safely to you!


    You are a wonderful mother! Keep up the good work! He will be home soon!

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  3. You are amazing and though I don't really "know" you, I am proud of your strength and dedication to your son. Anyone who thinks otherwise is a moron.

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  4. Omg people are so ridiculous. Do they get their jollies off of tormenting other people??
    You're doing a great job--but me thinking that or someone else thinking otherwise doesn't matter--YOU are Dylan's mom and you and he are all that matter.

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  5. Why do you bother with these trolls who post negative shit. Fuck them, really.

    XOXOXOXO

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    1. Agree there's trying to help that comes off wrong and dick heads. I don't comment often but I am here supporting and frankly you are doing a fantastic job. Honestly just ignore then!

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  6. I cannot even begin to imagine the extreme levels of emotional and physical stress you have been consistently and constantly under for the past year.

    You have dealt with decisions and situations the rest of us can't even fathom dealing with and you have handled them with strength and grace.

    I am so sorry this Internet "community" has been so mean and judgmental with your every step. Please ignore those who can so easily spew hatred bc they can remain anonymous. Their words reflect darkness in them and not of you.


    On a lighter note, what is up with nurses sucking at life and hating their jobs? You'd think someone who goes into that line would at least like other people and have a little compassion!

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  7. Thats just terrible of anyone to say that to you. I'm sorry that people are so mean. I hope Dylan gets to go home soon. Just remember you always have people rooting for you and Dylan.

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  8. Oh I'm so sorry you received comments like that. Utterly ridiculous. I have been reading both blogs since Dylan was born and how anyone can accuse you of not advocating for your son is either blind, insane or just ignorant. You are one of my role models as someone who knows her baby will have some time in the NICU and then even longer on the regular floor (2-3 months) once he's born. I so appreciate you and your sharing your story so please, ignore the haters and keep sharing it!

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  9. First and foremost, sending you some hugs. I find it appalling that people feel the need to be unsupportive when you have to be dealing with a son in the NICU. I pray that you get to take him home soon!

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  10. I had to go back and read your previous blog post to look at the comments. I cannot believe the nerve of some people. I'll be honest with you...I didn't agree with your choice to reduce the pregnancy, but I respected your decision. IT WASN'T MY CHOICE TO MAKE. I think we all react differently in situations. BUT with that being said if they didn't like your decision they should have stopped reading a LONG time ago. And expecting you to live, eat, sleep, and breathe 24/7 in the NICU...wow. I think that's impossible for any parent and I've never been faced with any situation like that. I wholeheartedly believe that you are doing the absolutely very best that you can. Don't let those people get you down! I think that you've done an amazing job taking care of you little boy so far! =)

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  11. OK NICU nurse intervening here. UM You are doing a FABULOUS job as a mother of a NICU baby. You can't be in there 24/7 and still take care of yourself, which you need to do to be able to care for your son when you are there. People who make comments about something they know little about really need to back off. I've been a NICU nurse for 15 years and NEVER have I seen a mom or dad stay 24/7 and be able to function. We usually send them home to care for themselves. I'm so sorry you're having to put up with people who are ignorant of how much of a toll this has taken on you as a new mom. I'm sending you all the hugs in the world dear and letting you know, I KNOW you're a wonderful mom doing WONDERFUL things for your son in the most extreme of unusual circumstances.

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  12. I only read about 2 of the nasty comments but I too am horrified that people can be so ridiculous. It's absurd. There really are some ignorant people in the world. You are doing a fantastic job. I've been following your story for quite a while but I normally don't comment. I just wanted to send you a note telling you to ignore the mean and hurtful people you don't need them!
    Thinking of you!

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  13. When I read the two negative comments on your previous post, I wanted to reach through the screen and give those two commenters a piece of my mind. But then I decided that I'm not going to comment back to them. That is just continuing the cycle.
    You know what being a mama is all about? Doing the best for your child. YOUR CHILD. YOUR. CHILD. Not anyone else's. YOURS. And that is what you are doing. And you know what else being a mama is all about? Taking care of yourself so that you can take care of your child. So sleeping in a chair for five months is not the sign of a good mama. A good mama goes home to sleep. In a bed. So she is healthy. And can pump milk for her baby. And hold her baby, and see her baby and be there for her baby when her baby needs her. A good mama takes care of her baby and herself.
    And more than that, I believe becoming a mother brings you into this motherhood club, where we should support one another and stand by one another. Becoming a mother means that we should know that we can never fully understand another mother's journey but we can certainly support her in that journey. Once you become a mother, you know that the purpose of your life has changed. You are now going to spend your life caring for and supporting and advocating for another human life. And that is what you are doing. You are doing the absolute best job you can. And more than that, you are doing a DAMN GOOD JOB! Keep fighting for your son and let those who spend time criticizing wallow in their negativity!!!

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  14. You are one of the strongest woman I have come across in this blogging world. I can't imagine just how drained you truly are. You are an amazing parent and hopefully soon Dylan will be able to come home!

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  15. it does seem like some are just waiting around to criticize. unbelievable. please see my comment on your previous post. Oh - and bravo to you for pumping milk for dylan! this is too much for many NICU moms... and you're doing it, all to try to do the very best for him.

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  16. I have been following your story for quite some time but rarely leave comments. I find they way you handle your struggles to be admirable and your honesty within your blogs even more courageous. I am appalled at the comments and judgment left by others. Keep your head up and know there are more who support you then don't.

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  17. I was with Mrs GG when she was dealing with that nurse and she couldn't have been more nice! I don't know how Mrs. GG deals with as much as she deals with. The NICU staff refer other parents to her for her to offer support to them, they have used the word "model" parent on several occasions. I guess those few commenters must know the situation better than the NICU staff!

    Seeing comments like those make me worry about future generations. If this is how moms act, what are their children learning? It is time to stop judging. Get on with you own life!

    Mrs. GG, you are awesome, Dylan is so lucky to have a mom like you!

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  18. Good gracious - I don't comment much but have been reading. People have A LOT of nerve to judge. I am so sorry you are having to deal with inconsiderate and rude assholes on top of everything else.

    Hoping the feeding chart helps you find a solution

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  19. I am so, so sorry that people go out of their way to be hateful. You are doing a fabulous job mothering your boy. Don't let anyone make doubt yourself or feel otherwise. Many hugs.

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  20. I just started following you. I'm so sorry people are trolling your blog and saying rude things. I have no idea why someone would post here if they don't agree, it's just rude!

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  21. This post shows what an amazing job you are doing with your son. Please know that people who criticize without having been in that particuar situation (the NICU for 5 months!) have no validity. They can't understand. I don't think I could have reduced as you did, but I do think you made the right decision. You most certainly wouldn't have D with you now and that shows you made the best choice. Just be certain you are a wonderful mommy and those commenters can SUCK IT.

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  22. Didn't get a chance to comment earlier, but - two hours a day driving to & from the hospital? For months? My daughter was only 15 minutes from us, for 3 weeks, and I still only managed to be there 4-5 hours a day. And let me tell you, there were plenty of parents I never saw when I was there. You are doing awesome! I don't know why these people have picked you out as someone to criticize.

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  23. People are giant assholes. You are doing an amazing job and don't let anyone make you feel you're not.

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  24. I'm sorry that some people are such douchebags. Please try to tune them out because you are doing an AMAZING job. I hope D gets to come home soon!!

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