This too shall pass, and you will eventually move on. But the time will be less stressful and more manageable with a few tips from a mom who has been there…twice. Plus: Grandparents and friends/neighbors, there’s tips here for you too.
NICU. Even years later, the word brings forth so many emotions. Joy, Exhaustion, Hakaras Hatov, Vulnerability, Fear, Fear of Now, Fear of the Future, and Separation.
The NICU world is not one we choose to enter, but ultimately the doctors, nurses, and the beeping monitors are there for the good of the child.
I traveled the NICU journey twice, b”H my children are doing well and to quote a devoted nurse, “he won’t go to kindergarten with a heart monitor.”
As a mother of NICU babies, I felt there is lots of room for education in this arena, so I put together some do’s and don’ts for all parties involved.
These are my feelings and my experiences. Every mother is different, so are their emotions, especially postpartum.
For Mothers and Fathers
—Your baby will come home when he is ready and when you navigate all the hospital protocol. Until then, know that this will be an emotional journey. The hospital staff mean your best interest, but they are not going to lose their job fighting for your baby. Follow the system.
—First and foremost, this is not going to be easy. But you will be ok and so will your baby! Take a deep breath, sit in that rocker and know that you can do this!
—Hold your baby, talk to your baby, it will give you emotional strength when you go back home.
—Sleep and eat, it’s the only way to keep on pumping and running back to the hospital and then back to your husband and kids.
—Accept help, this is not life as normal, you are not supposed to do it yourself.
—Schmooze to all the nurses, they are your key. If they feel valued you WILL get better care for your tiny baby. Yes! Listen about their fight with their boyfriends and the dog who wasn’t feeling well.
—Ask questions about your baby’s care, even if you don’t understand the hospital lingo.
—If you feel like you are being interrogated, YOU ARE. A nurse needs to make sure you can take care of your baby. Nurses see a lot of different cases. You will build the nurses trust, and they will relax and respect you with time.
—If you don’t like a nurse, you don’t have to stay, they will take perfect care of your baby even if they rub you wrong.
—Do what works for you and your baby, breastfeeding or bottle feeding. My baby was on a feeding tube for a long time, as well as a bottle, and I still breastfed him for awhile once he was discharged. I rented a hospital grade breast pump, it was a huge help for me.
—Talk to people who make you feel good.
—You don’t need to update every person that calls you on your baby’s status if you don’t want to.
—Try to avoid the emotional roller coaster of “Oh no he blued, that means two more days,” “she will be out of the isolet on Thursday, she’s not maintaining her temperature. We are waiting until Monday.” What worked best for me, was to relinquish control, and just go with the flow, advocate for your child, ask questions, but know you are not in control.
—Your baby will get discharged when they are ready, you don’t want to go back!
Grandparents
—It’s a balancing act of supporting but not overstepping your place, but you have the opportunity to make this time so much easier for all involved!
– Please tell me how cute and tiny the baby is. I know the rest of the medical situation and need emotional support.
—Make food.
—Pitch in with laundry.
—Listen to the information I share.
—Please don’t tell me that my baby should be home and it’s just the hospital keeping him. I have so many more doubts then you. I need a rock to lean on, to tell me it will be ok.
—Come visit my baby, I know it maybe hard for you, it is hard for me too.
—Celebrate the tiny milestones. He drank 1 ml from a bottle, woo hoo!
—Give my other kids attention. I feel great knowing they are in your loving care, they need you too!
Friends, Siblings, and Neighbors
—Text me please, talking on the phone is not allowed in the NICU.
—Send supper
—If I pick up the phone, I want to schmooze to you. I live my child’s health all day and night, so let’s talk about something else.
—Offer specific help, at a specific time, not general statements like “let me know what I can do to help,” For example, “Can I take your children for the afternoon on Monday…”
All the best!
A fellow mother who cares
I had a question.
Is it okay not to go every day to visit the nicu? Will the baby be cared for with all the nurse changes. How to balance that part when u live 1.5 hour away…
I found it very important to be there. That way the nurses really see that you care. I sometimes sent my husband instead since I was after a c section and wasn’t always up to it. My son was in the nicu for three weeks and I think we went every day even when it was hard and a long drive. We also went on Purim.
Another thing you can do is bring the nurses food which is very much appreciated and definitely helps also.
I am a NiCU feeding therapist and this article is very well written with amazing advice! You moms are warriors! The entire family goes through this traumatic time and I am humbled to be able to support and offer a shoulder to cry. My favorite point of the article was when you ask the grandparents not to instill anymore doubt about the hospital “just keeping my baby longer”. This is so incredibly far from the truth. If anything, I sometimes see the hospital want to d/c too quickly in many cases. As a feeding therapist, I work with the families very closely because eating by mouth is a huge milestone and typically the last one the baby must meet before going home. Much love!
Xoxo Albina Tzipporah Sukhodolsky
It is perfectly ok not to go every day especially if you live far from the hospital. When my baby was in the NICU for 3 weeks, we had someone there most days but not every day. 2 very important things to keep in mind: 1. On the days that you do go, be sure to bring tons of treats/pastries/coffees to the nurses so they see you care and be involved with everything going on. 2. When you are not there, you can always call the NICU and ask for an update on your baby. We did this once at the beginning of the shift change and once at the end of the shift. This way there was accountability for anything going on when we weren’t there.
And most of all, remember to look for Hashem!! You will find him in every step of the way but you just have to look!
Hatzlacha to all!!
I loved the tip about nursing! I pumped as much as I could to pour into the feeding tube, but when it became too much to balance at home (pumping on a timer on shabbos.. anyone?) and the other kids and traveling to the NICU and the rest of life/recovery I let it go and knew he was getting adequate nutrition from formula too. And a calmer mother
Wow! Great article! My preemie/nicu baby is 9 years old KH and I just teared up reading this and remembering that time. Like you said – everyone is different – but I find it interesting that grandparents visiting was so important to you. My few hours a day visiting my baby was so precious and I wanted the time for myself. I couldn’t figure out how to nicely tell my parents/in-laws that I really didn’t want their visits!
To the question about not visiting every day, I think you have to remember that your baby is in the best place possible for them right now. The standard of care from the doctors and nurses in the NICU is excellent and you need to do what works best for you and your family so you can be the best parent for your baby in the long run and for your other children. In terms of grandparents visiting, when we had our baby in the NICU, I spent most of the day with the baby and my parents and in-laws would go visit in the evenings and be there for the 8 and 11 feedings because it was important to me for family to be involved in as many feedings as possible and for the day shift and night shift nurses to see our baby was cared for.
I remember when a close friend had a baby in the NICU and when my husband went to the sholom zachar and the husband, wife and all the grandparents were there. My husband and I discussed then how we couldn’t imagine our baby spending Shabbos with no family members. Fast forward three months and our little baby girl was in the NICU. I had been in the hospital for five weeks before she was born and our first shabbos not in the hospital, newly postpartum I needed my husband to be with me. My in-laws however felt the same way we did and they went to spend Shabbos with our baby. The second Shabbos she was in the NICU my husband went to spend Shabbos with her because we wanted someone to be there if they took her off the oxygen, which didn’t end up happening then. The third Shabbos she was in the NICU was Shabbos Chanukah and it was too difficult for us to figure out spending Shabbos with her. At that point however we had come to peace with the knowledge that our baby was in the best hands in the NICU and we had to do what was best for us, what our friends had realized months before, and our baby wouldn’t remember that we weren’t with her that Shabbos. My parents had a hard time coming to terms with her being without family for Shabbos, but ultimately as her parents we got to make that decison. Turns out that Shabbos was when she came off oxygen for good and when we came after Shabbos to see her we had a nice surprise waiting for us instead of sitting through the angst of would it happen today.
3 nicu boys here! Bh beautiful young men today-2 are fathers already. I urge you to give your baby a name and use it! English name, nickname but call him something, it really increases your bond. Don’t worry about not bonding-(your baby doesn’t know any other way) your baby knows you! The nurses used to point out how my baby calmed the minute I put my hand in the incubator (that my husband called the fishtank!). Btw my 2 boys that were there the longest (approx 3 months) are my warm friendly boys- bec they met so many caring people so early! Bring some clothes, even just hats and socks so you can dress your child! (I had a little basket in the bottom of the incubator where they left his laundry. And i kept the clothes and the tiny bp cuff to show them and their wives) Ask if you can bathe the baby. Get a tiny musical pillow or box to put in with him. You will never forget those days, and have such hakoras hatov for every milestone. (I always tell my kids I just davened you should breath and look how much more you have accomplished! Hashem.is very good to us) Hatzlocha!
Been there too with my son. its an emotional roller coaster. Looking back i tell people that the most important thing is to have a support system, you and your husband cant do it alone. I made sure to call twice a day when they changed shifts so they knew i was on top of the situation even when i couldnt be there. I was also close to the NICU patient rep who was so helpful in so many different ways and made our stay there so much more comfortable and relaxed. there are so many ups and downs but BH youll get through it! My son is an adorable and loving 8 year old and i can happliy say that nightmare is behind me!
Agree so much with this wonderful post and the comments. A tip a fellow NICU mom gave me when my son was there was to take pictures! Yes it may be the last thing you want to do, but when your child is IYH home, you bring a piece of the Nes along with you seeing the dramatic change. By my son’s upsherin instead of profesionals I put up some of the pictures from his hospital journey along with candid shots, you can never forget those days. I cant emphasize enough either about bringing treats for the staff along with a thoughful note. Call them by name, make a connection with them. And when your child is discharged, make a mental note to come back some months later to thank them if you can. And of course, those tefilos that you shed tears over accompany the child forever. Refuos and yeshuos to all.
My son spent almost 2 weeks in the NICU and will be 5 years old soon. Great article with very helpful tips. The only thing I disagree with is regarding not liking a nurse – go with your gut and speak to the head nurse or liason if something is really bothering you. Most nurses are capable, warm and loving, but speak up if you have an issue. It will be much easier for you knowing that you trust the care being given. Trust your instincts and speak up if needed.
At the end of our NICU stay, we bought a huge tray of chocolates with a beautiful poem thanking the staff for all they did for our son.
B”h the NICU experience is behind us but will always be a part of our story… The days seem so long while going through it but iyh this too shall pass.
Mom of preemie here too.
I second your comment about nurses- if you don’t like a nurse and the way they’re handling your precious baby, it’s your right to cut her from the team. The head nurse asks about this indirectly on her rounds, “is everything going smoothly with the nurses? Communication..?” This is what they mean. If you’re not feeling it, just cut the nurse from your baby’s team.
Thank you for this beautifully written and important article. While my child was in the NICU, a relative of mine who also had a NICU baby, shared some invaluable words with me that I would like to pass along. We all have “Mother’s Guilt” and this becomes x10000000 when we have a baby in the NICU and other children at home. I remember constantly feeling guilty- while at the NICU, feeling “pointless”, as I could not touch or feed my baby and I was plagued with guilt for not being at home with my other kids. Then, when I was at home, I felt like a terrible mother, neglecting my poor little baby in the NICU. It is SOOOO important to be kind to ourselves (always! But especially during this most vulnerable time) and try to just live in the moment. Remind yourself that you cannot be in 2 places at once, and that you are doing the best you can. Also, buying small treats for yourself OTW to the NICU (iced coffee, anyone??), can make a world of a difference and make the NICU visits feel less difficult. Wishing anyone dealing with this, all the best and tremendous Hatlzacha! You will get through this IyH and come out a more sensitive and stronger person!!
My pediatrician used to say don’t worry (or feel guilty) about the baby, he has,the best babysitters in the world! Once I had more than one, I spent less time in the NICU but someone was there every day. You can only do the best you can-and the kids that “know you” need more . The new baby will get more of you when he/she comes home-just like any new baby.
Great article. My baby is 8 months old now and was in the nicu for 11 days. Talking and being friendly with the nurses really creates a connection and made me feel better when I could not be there. It was my babies nurse who suggested we get a fleece sleeper so he can pass his open crib test after failing it twice. She also allowed all my kids at once to visit him and not have them come in 2 at a time.
I went every day, Erev Yom Kippur, Motzei Yom Kippur, …. But some days I overdid it and would end up crying from exhaustion. So make sure to pace yourself.
Great article. It’s really important to have a strong presence in the NICU. Calling isn’t enough. The babies who have caregivers in the NICU get better care. Nurses are overwhelmed at times and it’s just so crucial to be there as much as possible.
After a C Section it’s hard to be there, so send your husband or another person who cares. Good luck, the NICU journey is fraught with challenges but IYH your baby should be discharged and you will put this behind you.
My daughter was born at 33 weeks almost 5 years ago and my son was born at 32 weeks about 2 years ago. Both were in the Nicu for exactly 4 weeks and are doing great now. You can’t tell a thing by looking at them!! B”h!
The first time around, I went to the Nicu every single day and it worked out well.
The second time around, it wasn’t possible to make it to the Nicu every day. Whenever I couldn’t visit, my husband went with the pumped milk and sent me updated baby pics. It was very hard to skip a visit and I missed the baby terribly.
I do think it’s very important to visit or at least call in every single day to show the nurses that you’re on top of things. It also somewhat relieves the aching feeling of being so far from your baby.
Note to Nicu moms:
-Don’t forget to eat and take care of yourself!
-Treat the nurses kindly and don’t hesitate to ask them for anything. I found that asking questions about the baby/shmoozing with the nurses definitely made them give my baby extra good care. They felt more connected.
-If pumping really doesn’t work out, please don’t drive yourself crazy! Formula is ok too.
-Use the Nicu time to buy everything you’ll need for the baby’s homecoming if you didn’t yet.
Message for neighbors/friends/ family:
-Meals, babysitting or car rides to the Nicu are always really appreciated.
-Please don’t repeatedly ask to see a picture of the baby. You’ll get to see him/her when mom is ready to share.
-It broke my heart every time people asked “when is the baby expected to come home?”
Since every time the baby looked ok enough for discharge, he/she suddenly was back in the incubator and it was back to square one. It was very painful to be asked about discharge!
Thank you for this post and for everyone’s comments! I am at high risk for preterm delivery and these tips are well written and useful info. Hopefully iyh I won’t need them (as we are davening for a full term baby) but in the case that I end up having a preterm baby, this post is very helpful!
Love this article! So many great tips. My daughter was there for 7 weeks.
I would just add that if you really don’t like a nurse you could deal with it for one shift but if a nurse is doing something you don’t like and you think they’re not caring well for your baby then absolutely talk to the charge nurse and have them switched out.
As part of the NICU mom club, some helpful tips:
* try to give detailed compliments to the nurse, like: we can see you are working here a while! You are so devoted to my baby. The baby is swaddled really well.
* Never report a nurse unless shes abusive. It will only come back to the nurse and your baby’s care.
* Whenever you don’t get to visit, call! But not during change of shifts or right in beginning- they are taking notes and catching up at that time.
* With my first aby’s nicu stay I went during the day with car rides and roamed the hospital all day. Came home drained and exhausted. With my other ones I went 6/7 pm, after dinner and we’ll rested. When you come home you can roll into bed for a good night sleep!
* Enjoy the advantage of no crying baby. It’s an advantage for the time being to get free babysitting while caring for yourself.
* Short and sweet visits make it possible to happen on a daily basis. And doesn’t exhaust you that much
* Take along healthy snacks and treats for the drive home.
* If possible, go with your husband to the NICU. It feels almost like a date night! Lol
And neighbors, friends, and family. PLEASE DONT ASK WHEN THE BRIS WILL BE! You will surely be invited! It’s extremely annoying after constantly hearing the question of when will baby come home from the NICU. Iyh in the right moment, not a minute before!
Good luck all of my friends! And after having a couple of them in the nicu, I take it as easy and as flexible as possible not expecting them home before their due date!
You don’t have to wait for a nurse to be abusive to report them.
If they are harming your baby in any way talk to the charge nurse. If you are kind and polite they usually try to work with you.
Remember you are your babies voice. Be there advocate.
The more you are in the NICU the better care your baby receives.
Such a well written article, thank you to the Mother who took the time to put this together.
My son was in the NICU for about 3 months during COVID so that was a whole separate experience. Only one caregiver per baby was allowed at a time, and only the parents were allowed in, no other relatives or support, no baby holders…
Bh at the time all of my older kids were in school, so I was able to be in the hospital every day with our baby without feeling guilt. My husband would go at night when I was home with our other kids.
The exception was Shabbos, when we made time to give our kids at home our full attention (as full as possible), and we’d get a babysitter so we could go on motzi shabbos and catch up on the day. The NICU staff knew not to call us on shabbos unless there was an emergency, which bh in those 3 months never occurred.
I think it’s very important, if it’s possible, to be either in the hospital in person or on the phone, when the Dr does rounds for your baby. The Doctors knew I liked to be present for rounds to hear the full update and game plan. The few days when I could not be there or was late, they called me so thst I could hear and give input/ask questions.
Definitely make it clear that you want to be in the know! If there’s language that you don’t understand, ask the Dr. Or nurse to explain. It’s very helpful!
I have so much more to say but I think most of it has alrwbeen addressed in previous comments. Just want to finish off with saying kov hakavod to every NICU mother out there, for what you have gone through and brought your baby (babies!) through. And if you are a mother currently experiencing a NICU stay for your child – Hashem will bring you through it, you will see!