A huge thanks to Melissa Harris whom I recognized from college when she began working in my office about five years ago. Now she is a mom of two, one of whom is nicknamed “The Anti-Preemie”. Earlier this week, she alerted me that today is the first World Prematurity Day and offered to write this “NICU Mom Survival Guide” based on what she learned as a NICU “survivor”.
Before we get to her tips, here is Melissa’s story as a video that her hospital produced about her baby’s story. Coincidentally, all five of the rookie babies were born in this hospital too.
In September of 2010, I gave birth to my son, Sam. He was just 24 weeks along and weighed in at one pound twelve ounces or 749 grams. We spent 95 days with Sam in the NICU at Alta Bates hospital. Every day was a roller coaster. Days might start out good, but deteriorate as the day went on. During our stay I had to watch Sam have four blood transfusions, get bagged by the nurses three times, have the crash team called to his room once, endure countless apnea and bradycardia events, contract an infection in his blood, have three spinal taps to test for meningitis, have to be reinutabed once, have heart surgery, and have eye surgery. Every day was a challenge, but Sam and I survived. Below are the key tips I would pass on to any new NICU mom (and one tip from my husband to all NICU dads)
1. You are the most important member of the medical team
Yes, the neonatologist and the nurses are the ones who can actually practice medicine, but it is you, the parents, that play a vital role in your baby/babies care. You are the one that is there every day. You are the one that knows your baby/babies better than anyone else. You are the one that can, and must, speak for your child/children.
Get to know everything about your baby/babies medical condition. Learn the medical terms and acronyms. Look at the chart every day. Understand what everything means. All of this will help you be the absolute best advocate for your little one/ones.
I feel like I am an honorary NICU nurse. I learned a whole new language filled with terms and acronyms like: apnea, bradycardia, CPAP, SiPAP, PDA, ROP, NEC, HA solution, and many many more. Being able to throw these words around made advocating for my son easier.
2. Ask for and accept help from anyone willing to give it
Sometimes, asking for help is that hardest thing a person can do. Get over it. You need the help. You will be at the hospital more than you are at home. A grocery store is a luxury you can’t afford. Running out of aspirin, ask someone to get it for you. Laundry piling up? Get someone to help. This is not the time to think you can do it all. Your job is to be there for your preemie(s). The people around you- its their job to be there for you.
My network was amazing. We had dinner delivered every other night. Groceries would just show up on our front porch. Our five year old had more play date and sleep over options than we knew what to do with. I made a decision early on to say “yes” to everything people offered. In doing that, I was never in need of anything.
3. You are human- allow yourself space (don’t get eaten alive by the NICU)
Leaving your preemie in the NICU is really hard. Moving yourself into the NICU, however, isn’t any easier. As important as it is to be present for your baby/babies, it is equally important for you to take a break.
For me, I tried to limit myself to 4-6 hours a day in the NICU. Any more than that would have been soul crushing. As Sam began breastfeeding, it became harder to stick to this limit, but we were nearing the end of our stay, so it was worth it.
4. Primary nurses are vital for your NICU stay
Not every hospital pushes for primary nurses, but you should. Designating a few primary nurses will make all the difference in your preemie(s)’s care. The basic idea behind a primary nurse is continuity of care. If you have the same nurse with your baby/babies day in and day out, they will get to know them, and will be able to tell right away if something isn’t right. Picking a primary nurse is more about how YOU get along with the nurse, than their skill level. Any nurse working in a NICU is skilled- how their personality matches with yours is key. As important as it is to find nurses you like, if you have a nurse you do not like- tell someone. You should never be made to feel uncomfortable when visiting your baby/babies in the NICU.
We were lucky to have a number of wonderful primary nurses, many of whom we still keep up with almost a year after discharge. Continuity of care helped save our son a number of times from unnecessary intervention: one time he was having lots of breathing issues and the doctor’s wanted to put him back on the ventilator, but his nurse was convinced there was another reason- and she was right, he just needed a smaller feeding tube.
5. Find an outlet for everything that is in your head
Having a baby/babies in the NICU is really hard. At the end of each day, you must find a way to release all that has built. If crying is what will help, then cry your eyes out. If you are a screamer, find a place to scream, and scream. Maybe baking or knitting is your outlet. Whatever it is, find it, and use it.
For me, writing was my outlet. I wrote every single day I was in the NICU. If I tried to skip a day, I found I could not sleep. There was so much running around my head, that I just had to release it everyday or it would consume me.
For the dads out there, you are the most important member of the support staff. Don’t expect a thanks right now, it will come later.
Your wife is in mama bear mode. She is 100% focused on your baby/babies and is totally unaware of all that you are doing to keep things going. She will, at some point, realize that you are the one that took out the trash, changed the sheets, brought her water and food, and held her hand. It may take her a few months, but she will thank you. Be patient, and know that without you, she would not make it. It is important, however, to remember that this is not just HER preemie(s). You are going through it too- so make sure to take the time to bond with your baby/babies and take care of yourself.
Again, thanks to Melissa for sharing! If you have questions for her, post them here! Did your baby stay in the NICU? What advice do you have for others?
I love this. I wish it had been written before our NICU stay! Such a hard, hard time.
I am currently in the hospital at almost 25 weeks on bedrest due to ruptured membranes so this post is good timing. I am of course hoping that we can keep him inside long enough to avoid the NICU but am glad to have read this so I am more prepared when this little guy arrives. Thank you for sharing.
Wishing you the best, Heather. The author of this guest post told me that one day on the inside is equal to one week of NICU care, so rest assured that each day you progress is doing wonders for your baby’s development.
I don’t agree with some of this. I had a preemie in the NICU for 10 weeks.
First of all I live abroad and have zero help from family and few friends. However we managed.
What I disagree with is the amount of time in the NICU. My husband and I did shifts and were there from 7 am to 11.30 pm doing kangaroo care. I feel that this is very important and beneficial for the child. I was pumping and feeding by tube also. For the last few weeks when the baby could take the breast I moved into the NICU as they had parental rooms there. I even slept with the baby in my bed. Tubes monitors and all.
Of course it’s an individual choice and depends on the family circumstances but for us, and in the opinion of the medical team, it was best to spend a lot of time holding the baby skin to skin.
Caroline:
I understand where you are coming from. The amount of time spent in the NICU is a very personal choice. You have to find the balance that is right for you and your situation. For me, I had a 5 year old at home as well as my son in the NICU. Being home for her was really important for her well being.
It sounds like the hospital you were at was great with the parental rooms. Where I was, there were only two rooms to service the entire NICU, so it was not possible to stay every night. Even if you do stay in the overnight room, you are not allowed to have your baby in there with you. I did spend two nights in the NICU before and after my sons ROP eye surgery. I “slept” on a cot next to his bed – which really meant I snoozed off and on between exams and alarms.
There is no question that Kangaroo Care is vital for your preemie- assuming your preemie is stable enough to be held. Each hospital is different, and each baby is different. My son could only tolerate being help 1.5 to 2 hours a day max. As he got older, he could handle being held a little longer, but not much.
Again, each situation is different and it is important for people to do what is best for them and their baby.
Melissa
Melissa, your journey was heartwrenching to watch as a friend, so I can’t even fathom what it was like to be in your shoes. I’m so glad you’re sharing your story to help others know they’re not alone and there are things that can make it just a little bit easier. Love to the anti-preemie and his anti-preemie, rockstar family!
What an amazing story! I also had a premature baby (my 1st pregnancy), a little girl at 30 weeks. I was shocked to discovered I was in labor and already 3 cm dilated when I went in for “pains”. We were able to hold off delivery for 2 days to receive the steroid shots for her lungs. She was born breathing and kicking and I even got to hold her and take a quick picture before she was whisked away. 6 weeks later we were able to leave the NICU – a tremendously difficult experience I am appreciative we went through. I will always be thankful for the unbelievable NICU nurses, doctors, and staff!
Ooh, Amy, you have just executed a double whammy on things that brighten my day. 1) real-life small world connections and 2) when people connect in my blog comments.
This is wonderful and so great that you shared it. I had my twins in the NICU at Alta Bates for 2weeks and every journey there is heart wrenching. But thank you Alta Bates NICU for making an incredibly hard situation manageable and thank you NICU “graduates” for sharing your stories – that is what helped me the most!
I WISH I could stay in the NICU that long. I have twins plus other kids at home. One twin is in the NICU and one is not. They have a no siblings policy, which includes twin siblings the same age. My spouse is 2 hours away at home with the other kids and I’m in the Ronald McDonald house (a lifesaver!) with the well twin – who is nursing so has to stay with me. I am only allowed to visit 20 min at a time a maximum of 20 min a day, even if the well twin stays buckled in his carseat! So 40 min total max per day with my little one in the NICU. This is pure torture.
hokiebear, your story breaks my heart (especially since you are living it right now). your hospital seems to have a sadly old (and backwards) way of delivering care to preemies and their families. i was in a similar situation as you, but was treated very differently in the nicu. myself and my family (older siblings and healthy twin) were 100% welcome and encouraged to be there. even then, it was torture (having my sweet babies in two different places, kids and dad somewhere else). the ONLY comfort i can offer is that, even though this seems like your new and permanent reality, it really does end! you will be able to look back on it someday and leave it in the past. my twins are 8 years old. both of them are healthy, happy, and their early bonding/nursing experiences (which i worried about the most) were important at the time, but now i realize that the past 7+ years have affected them so much more than that early madness. i will continue to think about you and send positive, healing thoughts in your direction.
That should have read that I can only visit 20 min, 2x per day for a total of 40 min/day. I’m so exhausted I can’t think straight. This NICU is a good one in a large Children’s hospital – I can’t understand why they have such a strict policy. I can understand not wanting toddlers running around or older (germier?) kids, but a twin infant in a car seat? I thought twins did better together also. Mine haven’t really been together since birth – I mean they haven’t touched – I hold the well one outside the incubator for the sick one to see, so they can see each other. It’s hearbreaking because I feel like I have to choose between children. Either I only see one 40 min/day or I leave the other at home with hubby and give up nursing him. I feel like I’m being forced to abandon one or the other basically. I don’t want either to feel unloved… there are just no easy answers. And no good choices. Thank you for the kind thoughts, I’m just hoping that we’re all home before Christmas. I don’t know if that’s realistic or not…
[...] an excellent piece for parents with babies in the NICU [...]
[...] honor of World Prematurity Day, Melissa also shared 5 tips for NICU moms on rookie moms. If you or a loved one are in the Neonatal Intensive Care Unit (NICU) at Alta [...]