The Romaezis

Life in the NICU–Advice for Mom & Dad

It has been nearly two years for us and I still remember Kamran’s days in the NICU.  I have said several times before that one single day in the NICU was 1,000 times worse than my 82 days on hospitalized bed rest.  The question of “what should I expect in the NICU” came up on my mommy board so I wrote a list.  I’m sharing here as well with the hope that it helps.  There are so many things I’m sure I am not covering but these are a few gems I learned.  Please feel free to contribute in the comments.

Our son snuggling dad in the NICU rocking chair, a few days old. March 2011

Disclaimer–I am a mom–not a doctor.  The information below is information I learned from personal experience, not any sort of official medical training.  Aside from medical intervention, which your neonatoligist will explain once your preemie is born, I have some things I remember.

Hold on Tight:  The NICU is a RIDE. Our son was born at 35 weeks, 5 lb 3 oz, 18 inches and in the NICU for 32 days.  Every day is different and like every hard time, there are highs and lows.

Celebrate Your Baby:  Your baby was born early and has some hurdles to overcome.  With this birth being so scary and possibly traumatizing (it was for me), remember to celebrate!  I was so incredibly happy to be a mom and love my son.  At first I found myself mourning my pregnancy, the birth I thought I would have, the full term baby I thought I would bring home 2 days after he was born and it was a true effort for me to celebrate my son at first having to focus on everything that was “wrong.”

Communicate with your L&D nurses:  If you know your baby has a good chance of going to the NICU, the neonatologist and NICU nurse will be in the room.  I had a csection and before my surgery began, I’m sure my blood pressure increased when the perinatologist asked if the NICU was in the room.  You might assume that doctors, nurses and even your husband know you want a picture with your baby at birth.  Don’t make that assumption and  before your baby is born, ask for someone to take the first photo.  Not a single person took a photo of me with my son the first moment I met him.  I don’t think I’ll ever get over that.  Once your baby is born, his or her health and wellness are a priority and it will be a super stressful time for everyone in the room.  The doctor’s and nurses will check your baby, make sure he/she is okay and then let you look at him/her and touch BRIEFLY if they are.

Ask Questions and Write Everything Down:  I cannot stress enough how important it is to ask questions.  Lots of them.  With that, write everything down.  If a procedure is suggested ask why your baby needs it and what the risks are.  Even ask what your baby’s restrictions will be.  For example, a friend of mine didn’t know that you cannot hold your baby for 24 hours after they receive an umbilical IV and learned the hard way.  She didn’t get to hold her baby until she was 2 days old.  I wouldn’t have even known to ask that question if she didn’t tell me about it.  We also couldn’t hold our son at all for 48 hours after he received his PICC line.  There may be visitor restrictions in your hospital.  Our son was born during flu season and only my husband and I were allowed into the NICU.  Our parents didn’t get to meet him until he was a month old.  It sucks but rules are rules and they are there not only to protect your child and their well being but other babies in the NICU who may have more severe medical conditions than your own.  Call your nurse for updates whenever you want.  You simply cannot be at the NICU 100% of the time.  When you aren’t there, call for updates.  Every parent does. I would call as soon as I woke in the morning to see how our son did overnight and always called before bed.  I would also call if I was up pumping in the middle of the night.  The updates always had the same key info.  New weight if weighed, any brady spells or desats, any procedures needed or completed, how he ate and his bowel movements and any significant milestones like “no more isolette!”  There were days where I just couldn’t handle bad news–so I would make my husband call and that is OK too.

Medical Intervention Can be Jarring:  When I met our son he had an IV in his head.  I didn’t know to expect that.  Your baby will be connected to cables and wires, tubes and a number of beeping devices.  It was my norm and all I knew after I got used to it, but know to expect your baby will be attached to medical devices.  While your baby is attached and the monitors are beeping try not to look at the monitor if it goes off.  Look at your baby. Learn your child.  When they come home you will be on the edge about “what if they brady” or “what if that”…knowing what your child looks like when something is happening it will help prepare you for home life sans monitors.

Visiting the NICU:  Yes, this is your baby but there will be times you simply cannot visit the NICU.  Ask your hospital about these times.  The first few days, our son had to be taken for testing or procedures and I didn’t learn right away that I should call first to let the nurses know I was on my way.  Having just had a csection and wanting nothing more than my baby, I would quickly become angry when I walked all the way to the NICU from recovery only to learn I couldn’t see our son because he was being moved for a medical procedure and I had to come back later.  Once you go home, call to let your nurse you are on the way and expect to bottle feed or nurse when you get there.  If they don’t know, your baby may just be finishing up a feeding when you arrive.  Talk about upsetting when your breasts are so full and you need to nurse, you want to see your baby but then have to spend the first 20 minutes pumping because they JUST finished a meal.

Your Baby Sets the Deadlines:  Since our son was a late term preemie, my husband and I definitely only expected 10 days max in the NICU.  When he didn’t meet the milestone I set for him, I got really frustrated and depressed. Your baby will set the pace.  The doctors and nurses will diagnose and treat your baby to get him or her home as soon as they can.  If your NICU is like mine was, they are trained specifically not to give you any deadlines because they really don’t know more than the baby shows them each day.  Expect timelines to be more like “your baby needs to show us they can do x and y for x# of days before he/she can go home.”

You Are Not in Control: You ARE mom so don’t be afraid to speak up and for your voice to be heard. Your baby can’t talk. There will be “rules” your NICU has for you, know those, follow them and learn to differentiate between a suggestion from a nurse and a hard and fast rule. There will be so many people who tell you what to do with your baby it is so frustrating being mom but temporarily not being “primary care giver.”

Don’t Believe it Until You See it:  If your doctor or nurse says “Your baby might get to go home tomorrow!” it is conditional.  If you baby has a setback, like a brady spell overnight, your baby will not get to go home. It happened to us and two other preemie families I know.  I learned that until my son was in my car, I couldn’t tell myself he was going to finally go home.  Like everything else in the NICU, setbacks keeping your baby in the hospital are frustrating.

Inexplicable Heartbreak:  There will likely be a day you have to leave your baby at the hospital and go home for the first time. Nothing can prepare you for that heartbreak and the fact that you are not in control makes it worse. Make sure your husband and family know to expect tears, frustration and just plain inexplainable, unfathomable grief.

Nursing?  Ask Your OB for a Pump Prescription:  If you are planning to nurse, ask your OB for a prescription for a pump before you discharge. For most insurance companies, the pump is covered under insurance as a medical device. Insurance will pay for more if you buy your pump from a medical supply company.  You may also need to have an insurance form signed by your doctor for the pump as well ask for this before you discharge too.  You will have plenty of medical follow ups to do once you go home, this will help you simplify.

Use Hospital Resources:  You will feel alone but you are not.  Ask to meet your hospital Case Manager and March of Dimes family support coordinator. They are super helpful and know about hospital resources for you like free parking passes for the hospital garage, infant CPR classes for when your baby goes home and even scrapbooking for your baby book.  NICU will provide lactation consultants as long as your baby is there. Use them.  If you are nursing, your hospital will likely provide you with the sterile “snappies” they require you to use.  The March of Dimes has lots of resources and research as well, check out their website.

Take Care of Yourself:  You have to take care of yourself too. Go home and shower, sleep as well as you can.  It will be hard to pull yourself away.  You simply cannot live in the NICU, in fact, if your NICU is like mine, you probably are not allowed there during shift change.

Ask for Footprints:  There is so much happening and other priorities in the room when your baby is born.  Once things have settled down, ask your nurse to take footprints.  I didn’t get my son’s footprints taken until he was a few weeks old simply because I didn’t know to ask.

Ask for Medical Records at Discharge:  Ask for medical records WHEN your baby is discharged so you don’t have to track them down later–there will undoubtably be A LOT of specialist visits and follow ups her first year. It will be helpful to know what procedures were performed and when.  I had no clue how many specialist visits there would be the first year.  There were times where we were at the doctors or a specialist twice in one week.  It was a crazy time but we got through it and you will too.

Take Care of Daddy:  This sucks for mom but if you are married or have a partner, you are not alone.  Any sort of stress is hard on a relationship.  It is really tough to balance your life outside of the NICU when you have a baby in the NICU.  Be open about this but also try to spend time with your spouse.  Even if it is just dinner in the hospital cafe.  If you have other children at home, I can’t help with that because I haven’t lived it–but I imagine that would fit in this bucket as well.  Perhaps gifts from the baby, show them lots of pictures and find time to spend 1-on-1.

Be Thankful:  Don’t just say thank you.  BE THANKFUL.  Your doctors and nurses work hard and care for your baby.  Smile, give hugs, don’t just tell them thank you, SHOW THEM YOU ARE THANKFUL.  Visit if you can.  Stay in touch, bring them cookies.

I know lots of preemies from our NICU stay. They all had a really rough start to life and they all had completely different issues and medical interventions. Some were in the NICU a short period and others incredibly long. They are all turning 2 and have completely caught up. You will get through this too.

Our time in the NICU has left a lasting impression on our family.  We have participated in the March of Dimes March for Babies every year since Kamran was born.  This year will be our 3rd year walking.  Every year I am simply blown away by the amazing families, the tiny survivors we meet and how much we all have in common.  Further proof that you really are not alone on this journey. http://www.marchforbabies.org/jromaezi