Hand to Hold's Official Blog: Written by Parents for Parents

New to the NICU? 10 Questions to Ask!

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.

  1. 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.
  2. 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.
  3. 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.
  4. 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!
  5. 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.
  6. 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.
  7. 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.
  8. 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.
  9. 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)
  10. 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.
  11. 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.
Kathryn Whitaker About Kathryn Whitaker

Kathryn Whitaker (TX) is the mother of six (including two 36-week preemies).  Her fifth child was diagnosed with IUGR (intrauterine growth restriction), born at 3lbs. 9oz. and then developed a severe surgical case of necrotizing enterocolitis (NEC).  He has various medical needs as a direct, and indirect, result.  On her personal blog, Team Whitaker, she writes about what she knows: big families, carpool, kids activities, faith, her beloved Aggies, specialist appointments and sanity checks with her husband.  You can follow her on Twitter, Facebook and Pinterest.


  1. Tricia Sheeran says:

    I just scanned this pretty much, but one of the things I learned most after a 3 month NICU stay was that this was MY baby and by God I have a say! I kicked one nurse to the curb, and learned to stand up for myself and my child.

    They may have the training and the knowledge, but they don’t have that mother’s bond. That’s my son and I’m in-tuned to him like no other. So if something seems odd, different, not right….SPEAK UP! Don’t assume it’s normal just because the nurses haven’t said/done anything…they may not have noticed!

  2. Do we have any right to take our baby girl home from the NICU any time we want??

    • I’m not sure if you have that right or not, Rickie. That’s a question best directed toward your neonatologist and medical team. However, when our son was sick, as much as I wanted him home, I wanted him home healthy, and that meant waiting until he was ready.

    • How did this turn out for you? I presently have the same concern/thought.

      • That is I mean withdrawing your daughter from hospital? ….I am having the same contemplations and thought that setting an appointment with her primary care doctor directly from hospital would help any backlash and of course if I had too I would take her back but she’s been there a month, it’s getting old, they are dragging this thing out like you wouldn’t believe….she’s on a score system and if she does anything that babies do its points that keep her there longer….I mean it is rediculious!

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