If you’re like me, the first few days of our NICU stay were a complete blur. There was the emergency c-section which happened way too fast, the hours of shaking while the epidural wore off, the relief in hearing my preemie cry, the hours of horrendous pain the first night and the pumping. Oh, the pumping. My husband served as the main gatekeeper of information and wore the “sane” hat for several days while my pain subsided and my head cleared.
On day four, though, I found my big girl meshy panties and began to sort through everything that happened. Unfortunately, there was no NICU fairy that floated into my room and gave me the 411. She did not give me a list of questions to ask nor did she inform me of my rights as a NICU parent and mother to Luke. I had to learn all those lessons the hard way. Here’s how I learned to be a strong advocate for my preemie and some questions that changed our NICU stay.
- What exactly does all that medical jargon mean? Neonatologists kept throwing out two- and three-letter acronyms like they were going out of style. “I am a NEO, please meet our NP. Your son has an NG tube. His H&H levels are X. Because of his birthweight, your son may get NEC.” Say what? I finally located the ten-pound “welcome to the NICU” packet they gave me and briefly scanned the acronyms. Then, I signed up for medical school through osmosis and began to ask as many questions as my brain could process. I became an expert on the NICU as it related to my son.
- Does the hospital have any special programs/services for NICU parents? I was lucky enough to score a rockstar postpartum nurse who also happened to be the antepartum charge nurse on the weekends. She informed me the hospital had a “nesting” program where, upon my discharge, I could stay at the hospital, free of charge, as long as they had room. The hospital wouldn’t feed or medicate me, but they would provide me with a private room that had a bed and a bathroom in the antepartum unit. I was just one short walk and an elevator ride from the NICU. When our son stopped breathing, we were there in minutes because I was staying at the hospital.
- Does my preemie qualify for SSI? By state law in Texas, a social worker is required to make contact with a NICU family and see if they qualify for SSI (supplemental security income). It’s not income based while your preemie is in the hospital (that only comes into play after discharge), so you could very well qualify based on your preemie’s birth weight.
- Does the hospital pay for our parking? Believe it or not, you may not be on the hook for all those hours you have your car in visitor parking. Just ask if your NICU has a free parking pass for you!
- May I please sit in on rounds and/or look at my child’s chart? While many hospitals embrace “family-centered” care (which is supremely awesome), many do not. That does not mean, however, that you aren’t entitled to your child’s personal medical information. You can request to look at his chart – anytime. And, depending upon your state’s laws, you may also have the right to sit in on rounds, as it pertains to your child. We were residents of two NICUs and while the second didn’t allow for us to listen in on rounds, the second one did.
- May I have a different nurse? There were some nurses we loved more than others, but I only used the “don’t ever give me that nurse again” card once. She had messed up royally on a medical edict from the neonatologist and it almost cost our son a major setback. Fortunately, I was there to intervene and circumvent the disaster. I immediately paged the neonatologist, explained my concern and politely asked we never be assigned that nurse again. The NICU happily complied.
- What is the phone number for the hospital chaplain? When our son stopped breathing, we asked that our priest be allowed into the NICU to perform an emergency baptism. But, it doesn’t take an emergency to summon a hospital chaplain. You can request him anytime.
- When can I meet the lactation consultant? Every Level III NICU has a lacatation consultant on staff who specializes in preemies/NICU babies. And, every hospital has one on staff. They are a gold mine of information. I asked ours a million questions and she sat in on many pumping and nursing sessions, giving me advice. Even though I had successfully nursed four healthy babies, pumping and nursing my preemie was a whole different ballgame.
- I need help! Don’t be afraid to enlist the support of your OB/GYN, primary nurse, social worker or any other medical professional for help. There was one incident when the postpartum floor nurse informed me I could “walk up” to the NICU and deliver my own breastmilk when I was only two days post-op from an emergency c-section. After a plea for help with my OB/GYN not only did that milk get delivered by the nurse in nanoseconds, but she offered me a trip for two to the Bahamas. (kidding, only kidding)
- Who is allowed to visit? Our NICU allowed for my three older children to visit, even though the sign said differently. They were healthy, followed the scrub-in procedures and only stayed a few minutes. That meant a great deal to them, and our family.
- And, a bonus. What is the prognosis, length of stay and best way to care for my preemie? Those questions and the respective answers are all your business. The doctors may have M.D. after their name, but they never trump the love you have for your child.