You are not crazy, let me repeat myself….YOU are NOT CRAZY!!!
I have learned several lessons about our extensive stay in the NICU,
Developing a relationship with the nurses is your means to survival AND your sanity. They have become family to us and I would never have survived without their love, kindness, compassion, and skill set.
Make friends with other NICU mamas, you never realize how alone you are until you are in that position and having other people who are experiencing your journey with you, makes the loneliness a minimal dull ache.
Never underestimate what you already feel as a parent
No matter if you have kids at home or if you are a brand new mama, there is nothing compared to the bond you feel to your child and you know that little person better than anyone, even more than the nurses that will be spending time with them. I am lucky in that I trust Baby E.V.’s nurses more than anything and I can genuinely say that they love my child. I don’t mean that they care for her as a nurse should, they genuinely love her, they tell me all the time, I can’t explain it, but she is already a special kid and they just know it (and no that is not me be bias).
I had been out of work the time that I was on bed rest in the hospital until about a week ago, so I spent A LOT of time in the NICU, maybe too much for my own good. I just liked being there, I loved being around her and hanging out with the nurses, I felt like a second home and the idea of it being a “hospital” never seemed to cross my mind.
What does cross my mind is the shift change. Sometimes you can have the same nurse every day for three days, sometimes its two, and sometimes it’s just one. Luckily, the night nurses are pretty consistent. You will begin to see the bond that develops between not only you and your child, but you and the nurses. I had already been told in passing by the physical therapist that E.V. was very particular with who she liked handling her and who she didn’t.
However there will be times that for no reason, your child may not react well to an individual or their touch and it won’t matter when, but that particular nurse just rubs them the wrong way. I remember thinking I was crazy, my husband looking at me like I was crazy and even one of the nurses who has pretty much become a part of our family giving me the same raised eyebrow look when I discussed it. Although the nurse is quite nice and explains everything she is doing in detail there was just something about her that was rubbing E.V. the wrong way and it was beginning to affect me as well. The nail in the coffin was the day that E.V. was supposed to have two bottle feeds a shift (we’d been here three months and these bottle feeds were important in her final escape), I spoke to the nurse towards the end of the shift where she told me they put her feed in her tube (she had a feeding tube in one of her nostrils) for BOTH of her shift feedings (meaning she only got tubal feedings that shift). After I asked ‘why’ and freaked out, she told me her respiratory rate was too fast. Fine, irritating, but fine. Obviously you do not want to force ANYTHING that could cause a major setback.
I repeat, YOU are NOT CRAZY!!
Fast forward to that evening when the husband and I come in and she’s what appears to be comfy and sound asleep. We had one of our favorite nurses, so already the night was looking up. Because my lovely daughter is not always the most friendly when she is woken from a deep slumber (who is really though?!), we hated waking her, but her temperature needed to be checked and she needed to be changed and bottle fed. I was surprised when I noticed that her respiratory rate was in the high 90’s (she breathes a little fast, but it never stays that way long) and it didn’t seem to be decreasing, in fact, it was staying pretty consistent. Hubs undid a pretty tight swaddle (which I must have said 1,000 times that she doesn’t like) and she was HOT…and extremely sweaty and almost immediately upon being freed, her respiratory dropped down to 34. I was in shock and enraged and was fuming to any of the nurse’s close enough to listen. THIS was the whole reason why my child wasn’t bottle fed ALL day?! Did she not think to wait 5 seconds or unswaddle her herself to see if her respiratory would go down?! Here is the NICU lesson I would soon learn…no matter how close I am to the nurses, they defend each other like no one’s business so at this point, be prepared for A LOT of excuses.
I repeat, YOU are NOT CRAZY!!
My point is this, just because someone is a professional and they have gone to school for it, are licensed in it, have dealt with similar situations a million times before and are with your baby on a daily basis, does not mean you are crazy for feeling the way you do and should go unheard. This goes for the doctor’s you will be seeing as well (and there are a lot of them). NO ONE understands your baby’s needs more than you, I didn’t even know that instinct could exist until now.
I had similar issues with the on-call doctors, because of the shift change, you will have one doctor and you won’t see them again for several days or even weeks and then they come back, and they can make a change that either makes or breaks your baby being closer to discharge. You will not only have your favorites, but you will also come to recognize their quirks as well. Again, great doctors, but when you had been there as long as we have, we were ready to see a game plan and the fact that there wasn’t one was maddening. Especially when you express concerns to the doctors and they are giving you this sympathetic look of ‘you have no idea what you are talking about.’ They stopped telling me a long time ago to stay off the internet when they found out I was in my doctoral program and did not do research that way.
As we had become closer to discharge, I felt the “crazy” creeping in. I felt like I should be making a list of certain nurses I no longer wanted overseeing the health of E.V. (I had already done this once), I began questioning all their choices, and demanding that people call me if changes are going to be made that could affect us taking her home. I had gone from the cool collected parent that everyone wanted to clone to the crazy ‘what are you looking at’ parent that cries over something like a bottle feed #truestory. In truth I am exhausted and NICUitis is a real thing.
However, I repeat…YOU are NOT CRAZY!!
If you have to call ten meetings with every doctor, charge nurse, hospital director whoever to make sure that you are being heard, then do so. Do not let your feelings go unaccounted for, because NO ONE knows your baby like YOU! And if you think something is wrong or off or even if you have suggestions, say them. It may be nothing, but it also may be everything. I heard all kinds of stories and nothing should stand in the way of you taking your baby home. Do not let anyone make you feel as though you have to tamper your feelings for thinking something is wrong by t someone who is not there all the time.
I repeat, YOU are NOT CRAZY!
If you do not want a particular nurse handling your child because you don’t like the way they handle them or even as something as small as not liking how they swaddle (cough, cough), you have every right as a parent to say “they are no longer allowed to work with my child”. Do not be afraid, if you are unable to be there during the day, you should be assured that your baby is 100% being cared for and only calling because YOU want to and not because you feel that keeping tabs brings you sanity. If anything, I hope this makes you feel a little less alone, a little less afraid, a little more more loved, and most importantly a little more brave, and....
I repeat, YOU are NOT CRAZY!