The following is personal NICU advice that either was given to me by other NICU moms or things that I tucked away in my memory for the future. Please feel free to ask any questions you may have, below in the comments section or reach out to me on Instagram.
While the team on your child’s case has their best interests at heart, no one has it more so than you and your husband. ASK QUESTIONS. There are no stupid questions. If you don’t understand, ask. If it makes you uncomfortable, speak up. If you don’t feel listened to, assert yourself. Ultimately, you are the parent and have final say. As my husband said: I don’t care where you think we got our info- be it from family in medicine or Wikipedia. If we have a concern or don’t like the road being traveled, you will respect that because I’m the parent and the one taking that baby home. If there is a person on your child’s team that you do not want, such as the afternoon shift nurse, you can talk to the charge nurse or nurse manager and make it known that you want them removed and not allowed back on. Remember though- these are professionals, so there may be little things you don’t agree with; try and not escalate the situation over something small like they use the binky they provide rather than the one you bring in. Try to remember that they will have other cases to care for, and may not be able to spend the free (i.e. not medical or care) time you think they should (especially if they have a high profile, sick micropreemie, or quarantined baby). In that case, I talk about the March of Dimes below.
At the same time, try and be patient and understand with the staff, especially the nurses. They devote their endless time and energy to these children. You may see them and think they are a bit withdrawn or brusque; they may have had a baby code or even worse, withdrawal care and watch the family grieve as the baby slipped away. They often go above and beyond, taking and sending pictures on personal phones, making decorations for their crib area, scouring stores for and spending personal money on preemie clothes for the donation box so that the less fortunate families who have traveled for months can take their baby home in a new outfit. They find and direct them to resources, from where to get nipple balm locally (and finding a coupon too) to finding a photographer willing to photograph their child for free before they pass. My sister is a NICU nurse; I’ve seen these struggles and the devotion firsthand. These professionals do this because they truly care, and they give up a LOT for their patients- keep that tucked in the back of your mind if they seem a little more distant one afternoon than usual.
I cannot stress this enough: document your family’s journey. Take lots of pictures; ask the staff or another mom there if they can take your picture with your baby if you’re alone (then return the favor). Take TONS of videos. The days blur together and you may think you’ll remember that moment he explosive pooped, but you won’t. I wish we had more videos of that time. See about bringing in a photographer to do newborn sessions; often the NICU will work with you to make sure you have a space. Most important: journal in a diary every day; go out and purchase a nice journal and a comfortable pen, and leave it at the hospital. Journal in the moment so it’s fresh on your mind. It doesn’t matter what you write, and it doesn’t have to be about baby. But get your thoughts out. Also take a stamp pad so you can do hand and footprints. Video journal in the pumping room if that works for you. It will not only allow you to better reflect back in the future, but it creates an amazing treasure to gift your child at his graduation, wedding, or birth of his first child. I don’t just wish I had done this; I deeply deeply regret that I didn’t do it.
You are usually allowed to bring in things to make the area a little more “homey”; we brought in his diaper bag, wipes (they usually DO NOT supply wipes, only paper towels and water), blankets from home, hats, and clothes (sleepers with buttons and nightgowns to accommodate the cords). We also brought in our own nursing pillow that we used while holding him, his little bouncy chair, and a change of clothes for each of us (after a poopsplosion led to me going home in a too small scrub top!). Bring a neck pillow for when cuddling in the rocker or glider. We also decorated the little bulletin board by his bed. If you have a portable swing, this is the perfect time to use it; other parents even brought in their MamaRoo (our NICU had a little portable swing). You can bring a robe to facilitate skin to skin. A book or magazines (especially if there are visitors and you’re stuck outside), stain remover, nipple cream (I recommend Earth Mama Angel Baby’s, its AMAZING), breast pads and maxi pads, basic toiletries like toothbrush for you.
Look into and use the March of Dimes chapter at/near your hospital. I cannot stress this enough. It’s free and they are there to help you. From supplying books and reading to your baby, donating hats and blankets, making holiday related things happen (“valentines” from child; Halloween costumes; Santa visits, etc), sibling events, parent date nights, take your mind off everything events (like crafts)… the list goes on and on. They often coordinate the volunteer cuddlers, who are there just for what it sounds like- to make sure your baby gets human interaction if the nurse can’t or you aren’t there. All you have to do is let them know you’d like one. They are there, use them! And once your baby is home, consider giving back by participating in their annual March for Babies, or by volunteering time and resources at the actual hospital.
Be considerate of others while there. This one can be a bit of a touchy subject, but it needs to be said. While you may want to stay every night in the family rooms available, that means a family that may need it last minute (weather related, or health related) can’t use it. You may want to bring all the kids to see the baby, but even if they are allowed that may not be the smartest or a considerate move during cold and flu season (especially if their podmate has respiratory or other serious issues). If you or any visitors are sick, stay home- it’s for your child’s protection and when you come back, be proactive the next few days and wear a mask, gown, and gloves- it may not be “cool” but everyone will thank you. Observe the rules and protocols, like the hand washing and phone cleansing and bagging personal items you take back bedside- they do matter and are there for a reason. Make sure everyone who plans to visit the NICU has received their Pertussis vaccine; whether you are pro or anti-vax, it’s not fair to impose your beliefs on other children whose parents may believe otherwise (if they won’t get it, then you need to make it clear their visit will have to wait until at home). If you or any visitors smoke, PLEASE PLEASE PLEASE, get a fresh change of clothes you haven’t smoked in and don’t smoke before going into the NICU or while there.
If you aren’t able to make it in for the day, or can only do one care/feeding a day, don’t beat yourself up. We missed multiple days in a row each. Hubby was sick for a few days. I was in too much pain a few days. There was a snowstorm and we were plowed in for 3 days. Beating yourself isn’t going to do anything but stress you out, and that doesn’t help anyone. Instead, utilize other ways of making sure baby is taking care of. Call in to talk to the nurses in the middle of the night if you need to- and don’t be afraid to ask questions, they truly don’t mind. Use the March of Dimes as previously mentioned. Most hospitals will also give a round-the-clock pass for visiting by themselves to grandparents (or whomever you designate), so if you can’t make it, have them go. And many NICUs now have cameras where you can log in and watch your baby. Use it for peace of mind.
Make sure you are taking care of yourself while baby is in the NICU- ESPECIALLY if you’ve had a cesarean section. REST. If you are in too much pain to visit, overdoing it won’t help either of you. Make sure you’re drinking enough water; it will help with any residual swelling. Have that glass of wine, even if you’re Breastfeeding (it won’t hurt, I promise). Go on at least one date night (even if it’s a date in with that sushi you haven’t been able to have but have craved your entire pregnancy). Get some new sheet masks and fuzzy socks. Get enough sleep. Use this time to heal.
You will probably get offers of help and meals, especially if you’re a member of a church. My suggestion: wait to cash in on those offers until AFTER baby is home. Or ask for freezer meals. Trust me, that’s when you will need it most. If you’ve had multiple offers of help, consider setting up Care Calendar or Take Me A Meal so people can schedule when to bring meals/offer help; that way no one shows up on a night when 2 other meals have already been dropped off. It also lets you list things like dislikes, allergies, and favorite foods so you don’t end up with something that will be wasted. In addition, see if you can cash in on one or two offers of help BEFORE you deliver, and have them help make freezer dump meals (skillet/crockpot/instant pot); if you make 20 meals, that’s less you have to worry about after baby is born, and can be done quickly with some help.
If you have pets, ask your NICU nurse for a blanket several times throughout your stay. Bring it home and leave it somewhere all your pets can get to and familiarize themselves with this new person’s scent. It truly makes a difference.
Send a thank you card or even better a thank you gift to your baby’s NICU team. And don’t be afraid to send updates and holiday cards- they adore those. If you have a great member of your team, from the attending all the way down to the housekeeper and dining services, make sure you let patient relations and the nurse manager know- they deserve recognition! And if you had an exceptionally great nurse, make sure to nominate them for a DAISY Award.
Some great ideas for gifts for your NICU nurses are baked goods (cookies, cakes, cheesecake, donuts, bagels) or other food, their favorite hand balm (ask first!), a Starbucks gift card, some pampering items, a coffee basket with double wall coffee mug (so they can have hot coffee)/individual Keurig/K-Cups, some nice pens, several badge reels, a Willow Tree figurine all make great little tokens of appreciation. Consider also making a donation to the NICU itself. Items for the siblings room (toys, books, movies, video game consoles, computers, TVs, DVDs, etc), breastfeeding pillows, vibrating bouncy seats, travel swings, rocking bassinets, new preemie clothes, a DSLR camera (it gets used, trust me), are all great suggestions. You can also make things like hats (make some regular size ones too for those who aren’t tiny!), isolette covers, a lovey for the baby to take home, homemade “Baby’s 1st Christmas” ornaments are just the tip of the iceberg of what you could do to help make the NICU a better place for parents and families.
Look into if your NICU has a reunion every year. Often, this is what the doctors and nurses look forward to the most. Most are free. This is where you can often reconnect with pod mates you had or families you met through the March of Dimes!
About the Author
Brittany is a mom living with Reflex Sympathetic Dystrophy, a rare disease that attacks the central nervous system and causes immense pain and other symptoms. Because of her diagnosis, the doctors made it clear to her and her husband Brian that she would be considered high risk if and when she became pregnant.
After meeting with all the necessary teams, including her OB/GYN, Maternal Fetal Medicine, Anesthesia, and Pain Management, Brittany and Brian learned they were expecting in July 2013, during a routine Ketamine infusion in the hospital, with a due date of March 1, 2014. In addition to being high risk from the RSD, brittany also had Gestational Diabetes, diagnosed at 16 weeks.
Because of baby’s size due to the Gestational Diabetes, a Cesarean Section was planned at 37 weeks. It was decided that during delivery, Brittany would receive a bolus dose of Ketamine. After delivery, her epidural would be left in from 24-72 hours and she would go back to the high risk floor during that time. Both these measures were to help reduce the risk of a spread of her RSD.
The biggest concern that was faced was the concern of Neonatal Abstinence Syndrome, better known as withdrawal, for the baby. Brittany was required to be on many medications during her pregnancy, including narcotics- while this may not seem ideal, controlling her pain levels was more important than the risk of withdrawal, or Brittany would be faced with an extremely high miscarriage rate caused by the intractable pain. Because of this, the baby was monitored with Biophysical Profiles at least once a week from 24 weeks on. Brittany and Brian toured the NICU out of caution for what may happen, and discussed the plan with the neonatologist.
At 35 weeks, the baby failed his first biophysical, and Brittany spent that Monday night on the high risk floor. She was discharged the next day after an uneventful night. That Thursday, however, she noticed that baby wasn’t moving, even after imploring all the tricks of the trade. Instructed to go straight to OB triage, Brittany and Brian had no idea that their lives were about to change, forever.
Brittany was admitted overnight for decreased movement and preeclampsia. Her admitting blood pressure was 189/116, and it failed to improve. It was time for delivery! Because of the nature of her high risk delivery, it was decided to wait until the next day, when the dedicated team put in place by her OB could assist in the delivery.
Caleb James was born 35 weeks 6 days on January 31, 2014 at 9:32am, weighing 9 pounds, 4 ounces and 20 inches long. He was immediately assessed by not only the in-house NICU team but also the team from the local children’s hospital. Brittany was returned to high risk, and held Caleb for 3 minutes. He was then whisked to the NICU because of plummeting blood sugars. He had an umbilical line placed, and was put on a bipap machine to help him breathe easier.
Brittany spent the first 36 hours in high risk with an extended epidural, unable to see Caleb. Thankfully Brian was able to use the iPad to FaceTime! After the epidural was removed, she spent another 2 days in postpartum, visiting the NICU every chance she could.
She was discharged that Tuesday, without Caleb- the hardest thing that Brittany and Brian have ever experienced to date. Leaving your child behind you in the review mirror leaves no words to explain the feelings.
All told, Caleb spent 3 weeks in the NICU for prematurity, Neonatal Abstinence Syndrome, pneumonia/breathing issues, feeding issues, and jaundice. Spending that time in the NICU changed Brittany and Brian. Caleb is now a healthy, precocious, mischievous, kind, loving three and a half year old, with no issues related to his NICU stay.
Brittany and Brian are now talking about a second child, and both realize that the time they experienced in the NICU was valuable. Not just for them, but for other NICU parents too. Brittany wrote this list of things to know about a NICU stay to help parents navigating the stay themselves. Brittany, Brian, and Caleb want other NICU parents to know that they are praying for them!
- Hand to Hold (highly recommend!): http://handtohold.org
- A NICU stay: http://pulse.seattlechildrens.org/six-things-to-expect-in-the-neonatal-intensive-care-unit/
- Leaving Baby at the NICU (highly recommend!): http://www.parenting.com/article/leaving-baby-behind
- March of Dimes: http://www.marchofdimes.org/local/in-your-area.aspx
- Whooping Cough info and Pertussis Vaccine: https://www.cdc.gov/features/pertussis/index.html
- Care Calendar: https://www.carecalendar.org/
- Take Them A Meal: https://www.takethemameal.com
- Preparing Your Pets: https://www.cesarsway.com/dog-training/socialization/introduce-your-dog-to-your-baby
- DAISY Award for nurses: https://www.daisyfoundation.org/daisy-award
- Motherisk (reputable medical guidance hotline out of Canada): http://www.motherisk.org
- MotherToBaby (evidence-based health advice during pregnancy, including medications): https://mothertobaby.org
- KellyMom: http://kellymom.com
- La Leche League: http://www.llli.org/
- LactMed: https://toxnet.nlm.nih.gov/newtoxnet/lactmed.htm
- InfantRisk: http://www.infantrisk.com
- What to Tell Everyone Once Home: http://handtohold.org/resources/helpful-articles/coming-home-from-the-nicu/
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