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The NICU can be an intimidating place, especially for those of us with little hospital experience. Even if you yourself have experience with hospitals, it can still be frightening because so much is on the line. Your newborn baby is hooked up to wires and tubes, possibly in an incubator, with little certainty about when they will come home.
So…how do you deal with having a NICU baby and their ever-changing conditions? Where can you find NICU support for parents?
How do you and your partner (if you aren’t parenting alone) cope with such a heart-wrenching situation? Initially, it might seem like there is not much that you can do, especially if you are also recovering from a difficult delivery yourself.
Being the parent of a NICU baby can leave you feeling powerless, but it doesn’t have to be that way. In this article, I discuss some strategies for helping other NICU parents deal with this difficult and trying situation.
These are the tips and tricks I learned while my son was in the NICU last year due to Respiratory Distress Syndrome.
Our NICU Parent Story
My son was born at 35 weeks and 5 days, a whole month ahead of his due date. He had to be delivered via c-section very early due to a dangerous pregnancy complication that was putting his life at risk.
Because he was born so early, he could not breathe on his own. He was on respiratory support, had to have multiple x-rays of his lungs, received surfactant in his lungs, and had to be weaned extremely slowly from his O2 support.
He also had to learn how to eat from a bottle–a complicated process for a 5 lb. 4 oz. baby who has difficulty breathing.
It felt like a very long process when all I wanted to do was have him home in my arms! It was a very emotional time for me, as I discussed in my earlier article on my experiences in the NICU.
My Tips for Surviving Your Baby’s Stay in the NICU
But there are some strategies I learned during our 37 days in the NICU that helped me feel a little more in control–and I wish I had known about them sooner.
I hope these tips help you make the best of a difficult situation.
1. Advocate for Yourself and Your Baby
Don’t be afraid to speak up, to ask questions–and even more questions!
Every NICU has rounds where the entire team of doctors, nurses, respiratory therapists, social workers, nutritionists, and other health care professionals in charge of the NICU babies check in on each child’s progress.
The language they use is specialized medical jargon, but if you are present, they will usually also break things down into layman’s terms. This is a great opportunity to get a full update on your child’s progress.
Ask the nurses when rounds are every day; tell them if you want to be there for rounds, and then ask questions at rounds. If you think of a question later, have the nurses call the doctor so they return to talk to you again.
Don’t hesitate to ask for a clarification–it’s your right as a parent to know exactly what the treatment plan is for your child and why a certain plan has been chosen for them.
If you can’t be there for rounds or prefer not to be, that’s ok, too. Your child’s doctor should call you with an update each day, and if you miss it, call back and get them on the phone.
Ask questions and don’t be afraid to ask about other options for your child’s treatment plan. There is often more than one approach to treatment.
2. Record Conversations With the Doctor
Ask the neonatologist (the NICU doctor) if you can audio record your conversations for future reference, especially if you are feeling super emotional.
I often found that I could not concentrate on what the doctor was saying to me about my son because I was so upset. If you record the doctor’s update, then you can listen to it again and find what you missed.
3. Ask to be Contacted
If you are waiting for your baby to have their O2 level reduced, or to take their first bottle, or to leave the incubator and you want to be notified of when it happens, tell someone.
Tell a nurse. Have them mark it down in the chart. They can call you day or night if that is your preference!
NICU parents deserve to be called when something happens with their baby.
4. Get ALL the Info
Insist on being told the names of your child’s condition/s. Look them up. Get information. Ask for information, even if it’s just a print out.
Take a photo of your child’s monitor and have a nurse walk you through what each number means and why the alarms go off.
You can even annotate the image on your phone so you don’t forget. You can also get the March of Dimes app to track your baby’s progress–or use a notebook and paper.
Don’t be afraid to ask a nurse several times to explain something to you: that’s what they are there for!
Some questions are better than others. Asking, “when will my baby go home?” will probably get you a rather vague answer. A better question might be, “What is the next step in my child’s treatment plan? Why is that the next step?” or “What is the next milestone he/she needs to achieve?”
Questions like those will get you much more specific answers.
5. Begin to Interact With Your Baby!
One of the things you can do to help you deal with your baby’s NICU stay is to begin to interact with them when possible. Here are several ways you can proactively engage with your baby:
If you are allowed to handle your child (not always the case with very sick babies or micro preemies), make sure to ask the nurses about the care schedule.
The care schedule is the designated times when the nurses take your child’s temperature, change their diaper, give them a bottle, etc.
Get involved! If the nurses haven’t invited you to participate, ask if you can. Insist on it.
On the other hand, if your time with the baby is limited, go ahead and tell the nurses that you’d prefer to arrive right after the care routine so you can immediately do skin-to-skin. If you want to be there to give them a bottle, make that clear to the nurses as well.
Holding your mostly naked baby on your skin is one of the most soothing things you can do–and there is evidence that it is good for the baby too.
Skin-to-skin or kangaroo care is a wonderful way to bond with your child whether you are the mother or the partner, and the nurses can usually help you get cozy with baby.
If you plan to breast/chestfeed your child, ask the nurses and/or lactation consultants at the NICU if you can start practicing at meal times.
My son was very weak and could not latch well, but with the help of NICU staff, I was able to start nursing him with a nipple shield.
Our sessions were often not very long, but it was an incredible bonding moment for me–and preparation for transitioning to full time nursing once my son came home.
He ended up needing the nipple shield until he was nearly 4 months old, so I was thankful that I had the expertise of NICU lactation consultants to walk me through how to use it!
Decorate & Accessorize
Bring in decorations for your baby’s area in the NICU (photos of you, for example) as well as clothes, swaddles and burp clothes.
The NICU can provide them for you, but this is another way to feel you have a bond with your child.
Read, Sing, & Talk to Baby
Bring books to the NICU to read to baby, even if they are asleep.
Renew your knowledge of songs and lullabies and sing to them. Or just have a conversation. Tell them about your day. Your baby will learn the sound of your voice, and you will feel a growing bond with your child.
6. Find Support, For Yourself and Your Partner (if you have one)
It is so important to find support when you’re the parent of a NICU baby. You shouldn’t have to go at this alone. Try the following to help build a community of support:
Find someone who can support you and validate your feelings in a way that makes sense to you.
I hated it when people tried to cheer me up, so I mostly talked to close friends who would validate my feelings about how much the situation sucked. But maybe your needs are different.
Find someone who can really listen to you without giving advice, but who can console you even just a little.
If there are two parents (or more), make sure that all of them are getting help.
I was so grateful that my in-laws happened to be with us when I delivered our son because I ended up spending a lot of time in the NICU alone due to COVID rules.
If not for my in-laws, my wife would have been home alone a lot, and I know she was stressed out from the situation with our son–and also with how upset and depressed I was.
Non-gestational parents, fathers, step- and/or adoptive parents need support at this time as much as gestational parents.
There are several NICU groups on the internet, including on Facebook, where you can connect with other parents dealing with the NICU.
These groups have people in them whose babies are currently in the NICU, as well as those whose babies are out of the NICU already.
Their success stories can be heartening, and they can also provide you with real time advice and suggestions on how to deal with situations that arise in your child’s treatment.
While not a replacement for professional help, these groups helped me feel a lot less alone in our journey.
When my son was in the NICU, we were also moving into our new home. It was a crazy time.
I had friends asking me “what can we do to help?” and I hardly knew what to say because I was so stressed!
Finally, someone offered us gift cards for a food delivery service. And though it felt a little awkward at first, we gratefully accepted. After that, I decided I would accept whatever help people wanted to offer us, even if it felt a little awkward.
Gift cards for meal delivery and grocery stores, gift certificates to restaurants, and gas cards are a great way for family and friends to help you out even during COVID times–or if they live far away or are unable to help for other reasons. If they offer, say yes!
Take a Break.
It’s OK to take a break from the NICU to make time for self-care.
I visited the NICU every day, often twice a day, but I still made time to go for walks in nature. I visited some nearby state parks, and I strolled in my neighborhood park nearly every day.
My son was in the NICU in the summer, so this was a possibility, and it really helped me center myself. Fresh air cleared my head, and the views of sky and water reminded me of all the beauty in the world–beauty that I would, in time, share with my child once he came home.
Find ways to work self-care into your routine, and try not to feel guilty if there is a day when you decide not to go to the NICU.
This is especially true if you have other children at home; they need you too.
Get professional help.
Every NICU has a social worker you can talk to, especially if you are stressing about the cost of the NICU stay.
They can also recommend a mental health specialist to talk to if you are feeling especially depressed or anxious.
Alternatively, contact your OB. In some cases, like ours, our OB had no idea that our son was in the NICU.
After the child is born, their health is considered completely separate from the mother’s/gestational parent’s, and there is really no reason your OB will know about your NICU ordeal. But, they can help you get mental and emotional help and resources.
An OB’s office will usually follow-up with you to make sure you are not suffering from postpartum depression (PPD). But you don’t have to wait for them to contact you. Call them and tell them you need help!
The Stress of Being A NICU Parent
Having a child or children in the NICU is a very stressful experience.
You never know what can happen, day to day, and the uncertainty of the experience, coupled with the stress of a new environment, postpartum hormones, and even financial stresses make this a confusing and challenging time.
I hope you find this list helpful and, maybe eventually, you will even find some silver linings. For us, as first time parents, we found that the NICU helped us learn how to take care of our baby under the helpful and experienced tutelage of the NICU nurses.
They showed us how to change a diaper, how to dress the baby, how to give him a bath, etc. By the time we took him home, we felt like old pros.
Now our son is a healthy nine month old, and I am so proud to see far he’s come in his short life so far–and how much my wife and I have grown as parents.
What helped you, as a parent, survive your child’s NICU stay?