New to the NICU

[jesusrocksjose777]

Our little Charlie bug was born at 27+4 on 4/20. We’re obviously very early on in what will be a very long NICU stay and would love some advice and encouragement.
It’s hard not to feel that everything is unfair and that she doesn’t deserve to be in this situation, which I’m sure many of you can relate to. My wife and I are scared, frustrated, confused… we also don’t have anyone we know, personally, that has been through anything remotely similar. We’d surely appreciate some advice or encouragement at a very scary and overwhelming time.
Luckily our hospital does offer a support group meeting that we will be going to, but we would also love to hear from all you lovely people.
Thanks in advance.
-J

 

[kimhimmel]

@jesusrocksjose777 Some advice from my experience, although with a 29 weeker I know it’s very different.

1. be there as often as you can with your other care and work responsibilities. Do as much kangaroo care as you possibly can… Studies show that the more you do, the better your kid’s outcome is and the sooner they can come home. If your NICU doesn’t allow it right away, push for it… It should be allowed even if they are on breathing support and have IV lines in.
2. Ask for help. Your community will rally around you. They will be happy to do so. Have them drop off meals or take care of things at your home if you’re not there very often. If people from far away want to help, have them send you gift cards for ordering food. Have them send you preemie clothes… Your kid will be wearing clothes before you know it! Seriously, don’t be shy about asking for help… You will pay it forward when it is someone else’s turn.
3. There is a honeymoon period the first week. Don’t be surprised if you see some backsliding regarding oxygen requirements, tolerating feeds, or anything else in after the first week. This is normal.
4. It really is a marathon. Make sure that you do something for yourself every day, like journal alone in a café, take a relaxing bath, spend time with a friend… Whatever it is. Make sure you do one thing that you find nourishing every day.
5. Two steps forward, one step back is true. Hopefully there will be far more good days than bad, but expect the bad days to come. talk in advance with your partner about how you would like to handle them and what you each might need, whether that is space or comfort or what. The last thing you need is to get in a fight with your partner through this very stressful experience.
6. Document things with pictures or journaling. Get footprints, save mementos. Ask the nurses to take pictures of you and your partner and your baby with major milestones like weeks passing, first bath, changes in breathing support, etc. They are actually many beautiful moments that you will get to have that parents of a full term baby will never see. I know it seems like a long road now, and it is, but it really will be all a blur after. keeping track of things is a nice way to look back and see how far your little one has come and how resilient you and your partner are

 

[jesusrocksjose777]

@kimhimmel Thank you for this. This is hugely helpful.

 

[katrina2017]

@jesusrocksjose777 Hi! My 27w4d little guy is on day 73 in NICU. The first post detailing everything is spot on. Though some things differed that worked for me. I continued to work remotely while he was in there so I could preserve my time off when he came home. Do not feel guilty about not being there 24/7 with her. Do your very best and know she is in the best hands possible. Read books to her and do skin to skin. Try to at least be there for rounds either morning or night. Take breaks when you need to. Advocate for your baby. Take pictures and videos and let them know you want to be involved in cares and baths. Also, please hug your dear wife. I still struggle with the guilt of the situation, that I wasn’t a good enough woman. I’ve struggled with milk production as well which has really impacted my mental health. But bottom line is she did nothing wrong and can’t carry that guilt forever. But let her mourn for the time being and hold space for her.

 

[jesusrocksjose777]

@katrina2017 Will do. Thank you.

 

[3john3]

@katrina2017 Oof. The milk production struggles really hit me hard in the NICU! My husband has had to be so understanding and supportive.

 

[katrina2017]

@3john3 So ready to be done! I’m down to 30 mL or less a day.

 

[hillzberry]

@jesusrocksjose777 We are one month in, with a teeny tiny boy born at 25+3. Feel free to reach out if you or your wife needs someone to talk to.

I know for me (mom) I’ve struggled a lot with feelings of upset like my body failed him to grow till 40 weeks and it’s taken a lot of time to work myself through those thoughts and talking with friends.

Biggest thing is finding balance for your time together and your time with baby. I realized very quickly you have to take care of you to be able to help take care of baby.

I spent a whole week running myself ragged spending every second with him, and it did him nor I any good in the end.

 

[jesusrocksjose777]

@hillzberry That’s great advice and I may have my wife reach out on her Reddit account. Thank you so much for the offer

 

[hillzberry]

@jesusrocksjose777 Definitely a club no one wants to be a part of but we all definitely can use support and friends where we can get em! Baby will definitely keep you on your toes. Our little man has definitely started writing his own playbook.

 

[barneyo]

@jesusrocksjose777 My Shyloh was also born on 4/20 at 28 weeks and 2 days It’s definitely hard, but you have to be strong for the baby! But that doesn’t mean don’t take care of yourselves either!!! Allow yourself to feel every emotion These lil babies are super strong!!! Y’all got this and this group is definitely the place to be!! It helped me since I got put into the hospital at 21 weeks and 3 days when my water broke all the way up until now! Im praying for y’all and baby

 

[mduncanmoore]

@jesusrocksjose777 Hello!

I have a 28 weeker who’s rounding out week 6 of his stay, with a few more weeks anticipated. It’s a shitty club but it’s the club we’re in

Like others have said, it really is a marathon and not a sprint. It has really helped me to constantly have it in my head that he won’t be home until at least his due date, and that I was patient enough to wait that long while he was inside me, so I can be patient now, it has helped a lot in preventing NICU-itis.

It is great to be there as much as you can, but it can also make you a little stir crazy being there 24/7. It is okay to go home, to sleep, to relax, to do things with friends and family. It is okay to take time for you, because you’re a better parent and advocate for your babe when your cup is full.

I have found with my son that there is a lot of time where I am sitting and waiting 30-45 minutes after I get there for his hands on care time, so I’ve got in the habit of bringing a book so I don’t drive myself crazy staring at the monitors. I highly recommend finding a book or something similar to distract yourself during the down times.

Don’t be afraid to ask questions! Both about your little ones care, and how much of it you can participate in. It helps to understand what is happening and why, at least for me. And asking to participate when you can is always nice for you and baby. There might be times they say no, and that stings the first few times, but as time goes on, the yeses should become more common.

That’s about all I can conjure up. I wish you and your family the best of luck

 

[jesusrocksjose777]

@mduncanmoore Thank you for this. I think one thing that has been hard is leaving the hospital and that feeling that we’re abandoning her, but I really appreciate the reassurance

 

[geny23]

@jesusrocksjose777 Welcome to a club no one wants to join. Ours was born at 27+0 and was in the NICU for 94 days. Echoing what other people are saying here: figure out a routine that works for you. I liked to try to be there for rounds but someone will update you if you can't be. Sing and read to your baby and hold her as much as you can, but don't feel guilty about taking time away from the hospital or you will get burned out. I'd recommend attending the support group even if only to get to know some of the other families there. As more of a long-hauler, I was initially surprised by how many babies were there for only a week or two, and getting to know some of the other micropreemie families was nice. Get involved in your baby's cares (diaper changes/feedings/temp/etc). Save one of each size of diaper, BP cuff, etc so you can look at it later and see how much she's grown.

It's OK to tell friends and family not to come by if it's not helpful for you. Trying to explain all the NICU stuff to visitors can be overwhelming. They will also probably keep asking you if you know when she is coming home. In our case it was always well-intended, but frustrating. We had basically a 2-day notice that she was likely to be coming home and I think that's pretty typical.

The constant alarms can be scary at first. You'll eventually start to get used to things that feel really terrifying in the beginning, like brady/desat episodes (they're par for the course at this age). Watch the nurses to see how they respond. If they're looking calm, it's probably not an emergency even if it feels like one in the moment.

 

[shonspawnel]

@jesusrocksjose777 There’s a book titled Preemie that has so much valuable information. Here’s my tips (first was 27weeker):

-take one day at a time

-talk with nurses and find a few in day and night shifts you like. Ask them to be your care team for consistency.

-get to know the charge nurses too.

-don’t be afraid to take a day off. Baby is in great hands!

-learn the terminology so it doesn’t sound so scary. The book helps with that.

-don’t rely on the monitors. Have the nurses talk to you about what a desat is and what the signs are.

-anticipate going home around due date - anytime before that is bonus.

-there will be times where it’s two steps forward, one step back. There will be off days but stay encouraged.

-attend rounds at least every few days so you can talk with NP and docs. When you can!

-feeding is one of the longest parts. When you get there, be patient with baby - they will learn on their own time. Rushing and pushing them, no matter how fast you want them out, can sometimes delay them. Trust your NICU team, they can guide you.

It’ll be a journey but remember baby is in a safe space with a 24x7 care team!

 

[jesusrocksjose777]

@shonspawnel Thank you for all of these. This is incredibly helpful

 

[cometa]

@jesusrocksjose777 My son was born at 27+4 he will be 1 in 10 days! We spent 98 days in the NICU - it’s a LONG HARD journey and you will have good & bad days. My best piece of advice is to be there for each other. Ask as many questions as you can, try to always be there if not ask for a phone call during rounds when they explain everything in detail about the status & plans for your little one. Although every child is different Luca is now thriving & thus far reaching all milestones. These babies are so strong and fighters. You will be simply amazed at some of the things you witness as Nicu parents. Sending love & hope you have an uneventful Nicu stay

 

[jesusrocksjose777]

@cometa Thank you so much! 27+4 babies are pretty cool, I gotta say

 

[jimsorrell]

@jesusrocksjose777 Congratulations! Its scary. And unfair. And full of love, community, and support (right here, in the NICU, and with your family/friends if you are lucky).

We were in the same place with our son (born 27 + 5, 2.5 lbs) 18 months ago. We had no concept of what this meant for our son and our family at the time. All I knew was that I believed in him, that we were the luckiest he was ours, and that we would love him no matter what.

Every journey and family is different but here’s what I remember from ours:

• We held our son whenever we could, and it was very special for our bonding. We also took days off to rest when we needed to. We were there 85 days.
• We found nurses that we loved and asked them to be primaries. They made us feel so safe and cared for. We are still close with all of them. Nurses hold the specialist place in our hearts now.

-We accepted help. We let family deliver food, help clean, and take stuff off our plates (dog sitting etc). I feel like this brought us closer to our families in many ways.

-We posted pictures and updates proudly and honestly to a family album where everyone we cared about could get updates in one place. It both minimized inbound questions and also ended up being a cathartic journal of sorts. We got a lot of encouragement from family through this too.

• We carried a lot of anxiety home with us post-NICU. In retrospect, I can say our son was ready long before we were. We should have believed in ourselves as much as we did in him.

Finally, if it helps to know that positive outcomes are possible - our son is absolutely thriving now despite his very early arrival. The kid spent his first weeks in the smallest baby/micro-preemie unit and with the help of the NICU and early intervention is now completely caught up developmentally and physically. He loves to eat, cuddle with his dog, watch birds, play hide and seek, smell flowers, climb furniture, run into the bedroom to wake me up…all the things I imagined for my son and more.

Wishing the same for your family and little Charlie. You got this

 

[martinius]

@jesusrocksjose777 Take everyday 1 day at a time. Take breaks, I know you will feel like it’s your duty to go every single day, but your health is important as well. My son was born 1/26/24 at 29 weeks and just came home on 4/2/24. There were some days that I would go up and see him for 10 minutes, drop off my milk, and then go enjoy the sunny day. And it’s okay to do so! Especially early on while she is incubated. You guys got this!