How to help NICU Baby

[kellyanne77]

Hi everybody,

I posted this in health and healing but was told by the moderator it was better served here.  So here goes!

My daughter was 10 weeks old yesterday, and to celebrate went into the hospital for her 3rd surgery.  She was born without the holes in her nasal cavity and has been in and out of the hospital 4 times in her young life for observation and repair.  We are very lucky in that she is alert, interactive, and loves to smile.  My chief concern, however, is how to best help her now.  Just when she gets her feet underneath her, she gets put back into the hospital, exposed to chemicals, IV fluids, radiation (x-rays) and a whole host of other unnatural things.  I have struggled to feed her breastmilk (we haven't been able to nurse, just when she gets strong enough to try she winds up back in the hospital and we're back to square one) but even on fenugreek I can only produce 3oz a day.  I wear her and hold her as much as I can.

[Ratchet]

Pay attention to your own health and mental wellbeing to allow yourself to be a positive presence.  Get enough sleep.  Avoid any unnecessary housework and get one of those nice people who asks "is there anything I can do to help?" to do it.  Then be relaxed and present for her, and skin to skin whenever you can.  Be a good example for coping with stressful procedures- calm, deep breathing, matter-of-fact about doing it, not getting worked up before hand, etc.

My daughter is now 18 months old, was in the NICU for 80 days and readmitted once for surgery, and had weekly traumatic eye exams for months.  She is now appropriately cautious but never fearful; quick to forgive; social and outgoing; curious; and adjusts well to new environments.  I think that is due to being poked and prodded so much. (She also has some residual oral aversion issues, but they are more just quirks of her personality and not terribly disruptive). The procedures that happen are only one piece of it; she is learning skills to cope with painful events and that things can be unpleasant without being traumatic.   

Perhaps some other folks will have suggestions about undoing the harm of the other exposures.  I have always been of the view that I don't want anything that's not necessary but if it's necessary I am not going to fight it or sweat it.  

[MobiusStrip]

Ratchet, my son at 3 recently told me, "Nurse Gladys held me up to the light" and I did not know what he meant. When I pushed him to elaborate, he said, "Nurse Gladys held me up to the light and I was scared and then I could not see." He apparently remembers all the ROP exams! (He had a fair number of them as well as his condition remained very much the same for weeks and weeks on end before his blood vessels matured other than some minor peripheral vision loss. I was amazed that my baby boy could remember the NICU!

[BaileyB]

I was just about to post something very similar. Our daughter is only three weeks and has been in the NICU for two weeks. She has been sedated for various tests including MRI and bronchoscopy and a double surgery. She has had 3 rounds of profilactic antibiotics, morphine, fentanol, and Tylenol. She seems to be doing well health wise other than a diaper rash from antibiotics (surprise surprise). Every time they give her something I just cringe and feel like the worst mom ever and can only imagine what possible consequences she may have later on from all this. I just picked up some infant probiotics today but have no idea what else I can do for her. She is also 4 days post op from tracheostomy and g-tube insertion and am not currently pumping due to such an erratic schedule and long drive to and from hospital and I also have a 2 year old at home.