New NICU Father. All help and advice please

[bennycross315]

2 days ago my wife got rushed into surgery due to severe preeclampsia and also a diseased placenta. To save mother and baby’s life the birthed my little baby girl via c section at 25+5 weeks at a weight of 420g or 0.978 pounds.

I am very scared and don’t know what to do, feel or think. My wife is still recovering and my tiny baby is in the NICU and I can’t do anything there.

Any help, advice or just what to expect I welcome.

 

[everydayjoe]

@bennycross315 Older NICU dad here. Sounds like you’re in a good facility. The staff are usually very supportive. Just some tips:

• Your daughter will likely be in the NICU until around her original due date. Be glad you have a daughter, girls do better than boys statistically.
• Your daughter’s weight is the same as my 27W son, pretty good hopefully. All babies lose some weight after being born, this is normal. Can be scary.
• Unless there’s something else going on helping your daughter breath is top priority. She may be on a ventilator. The hospital will be careful administering Oxygen, too much can be harmful.
• You can be useful in the NICU, assuming things are stable and visitors are allowed. Let your daughter hear your voice. Chat a bit with nurses and therapists. Ask questions on behalf of your wife.
• Get someone to talk to for yourself. You will be in support mode and will likely be helping your wife. Have a friend for you to vent to.

 

[maggie123]

@bennycross315 Exactly five months ago I had an emergency c section at 25+0 weeks. Like your wife I had severe pre-e which was super scary and shocking since it developed so early in a pregnancy that had otherwise not been identified as high risk.
First and foremost I’m glad it was caught for your wife and baby before anything terrible happened to either of them. That said, having your pregnancy abruptly end that early is really jarring and devastating. I’d keep that in mind for what your wife might be going through in the next couple months. Having a baby in the hospital was sad and scary for both me and my partner, but I think I also carried an extra layer of regret and guilt over the reality that my body couldn’t keep our son inside longer.
Now that you have a tiny girl in the NICU I’d encourage you to search this sub’s history for posts about 25 week micropreemies. That’s what I did and found it very encouraging to learn 1) what might be in store for our 25 weeker; and 2) how many great outcomes there have been for babies like him. The medical care these babies receive is incredible. That’s probably my biggest takeaway from this whole experience.
My biggest piece of advice is to find a NICU visit schedule that factors in you and your wife’s mental health. My partner and I both worked full time the entire hospital stay to save our parental leaves for when our son came home. It was definitely rough. But thankfully our jobs were flexible enough to allow one of us to be at the NICU everyday for 4-6 hours. I’m glad we didn’t feel the need to be at the hospital 24/7. Even being there for a couple hours felt stressful and draining. In the end our son’s outcome exceeded the doctors’ expectations. He came home off oxygen after 97 days. I’m in the middle of my maternity leave holding him as I write this.
Best of luck to you three during this tumultuous journey.

 

[lostandinsecure]

@bennycross315 Remember it's a marathon and not a sprint. There often is a "honeymoon period" with micropreemies where they do really well for a week or two and then can start to struggle - this is super common. Kangaroo care has been proven to help, but trust your care team if they say it isn't possible - some days baby will be too medically fragile for it.

Take care of yourself and your wife - eat, hydrate, sleep, and find a way to care for your mental health. Therapy was necessary for me. Your wife will need to physically recover, and so help her with that - feed her, do all the bending and heavy lifting, go with her to appointments if you can.

If your wife is pumping milk, there is a LOT you can do to help her with that, because it is a huge task and very draining on energy. Buy multiple pump part sets, wash and sterilize the parts for her, bring her drinks and snacks while she pumps, help her wake in the night to pump - keep her company if she wants you to, although she might prefer to watch netflix! Give her a back massage because pumping is hard on your back.

 

[jacotte]

@lostandinsecure I agree on the pumping help! When my son came early this spring, pumping was a really tangible thing I could do for him. But it's a lot of work. At night, my husband would take the milk to the fridge and wash the pump parts while I went back to bed.

Breast compression/massage is also helpful while pumping, and it's nice to have someone else do that for you when you are so tired.

 

[babooshka]

@lostandinsecure I also second the multiple pump parts and help with washing/sanitizing!

 

[misslefty]

@bennycross315 I don’t have experience with micropreemies, but others that do will chime in soon. I just wanted to let you know that I see your post and you’re not alone. I’ll keep you, your wife, and your daughter in my prayers.

 

[freepeople]

@bennycross315 If you’re in the US, getting a therapy appointment can take a very long time right now. I’d do this as soon as possible. It was indispensable for my husband and me, we had a micro premie in the NICU. Other commenters have provided great suggestions. Find moments to celebrate your little one. There will be many tough moments but also moments of joy. My very best wishes to you, your partner, and your daughter

 

[gab54fer]

@bennycross315 Hi mate. I’m a NICU dad too, in fact my little one is still in hospital.

This is a really really hard time for us dads. Most people expect us to be the strong one and just soldier on. But the reality is, it sucks.

First off I’m really sorry your circumstances bring you here, but just know, this subreddit is a great support network. NICUs are amazing and the nurses there will bend over backwards for your little one. All the advice people have posted is great and the most important one I think is just be there for your partner. This is very hard on her, both emotionally and physically while she heals.

Message me anytime my friend. If you want we can link up somehow for a phone call even.

Your baby is in the best place it could be.
I’ll keep you in my thoughts

 

[samleebr423]

@bennycross315 Congrats on the birth of your baby girl, and I’m sorry you and your wife are going through this. My twins were born at 26+2 back in February. It has been a long and difficult experience (95 days, then another 108 days on oxygen support at home), but now my twin boys are happy, goofy babies at home with us. I truly can’t believe sometimes how far they’ve come. My advice is to write things down that the NICU staff tell you and ask questions when you have them. They should understand that you’re new to this and be supportive. Soon you’ll be the absolute expert in your daughter’s care. Take breaks! Looking back now, I wish my husband and I had taken more breaks from the NICU and more days off when we needed it. We were so hard on ourselves. Being consumed with guilt or shame or being convinced there’s some perfect “right” way of being a NICU parent that you’re not achieving is such a damaging mindset, so try to be kind to yourself; I really recommend therapy if you’re able to access it. Doctors always told us to take it day by day, but look at the overall trend—it seems like contradictory advice, but it makes sense when you’re in the swing of it. Backslides are normal, but terrifying. You might have good and bad days. The first few weeks and the last few weeks were incredibly emotionally difficult and exhausting for me, but the middle felt manageable—don’t expect it to always feel as raw and sharply painful as it does now. Your baby is where she needs to be, she’s getting amazing care, and you’re doing an amazing job supporting her care even if it feels like you can’t do anything right now. Friends and family will almost definitely say the wrong thing sometimes, and you and your wife can gossip about it later if you need to. But don’t feel like you need to do this alone! We don’t live near family, so we took friends and neighbors up on every offer and let ourselves lean on others. This group also helped me a ton. You can get through this period. I’ll be thinking a good thought for your little girl!

 

[katrina2017]

@bennycross315 Congratulations on your baby! I commented elsewhere yesterday about my experience having a 29+4 girl in July. She's 40 weeks now and has been home one week (62 days in NICU+SCN).

I can't overstate taking things one day at a time. For a long time in the NICU you're both going to feel useless and helpless. The nurses will do most of the work, but the one thing you both can and should do consistently is kangaroo cuddles. Do an hour or two each everyday if they permit.

Take good care of yourselves and be kind to each other. It will always be a step forward and one back (sometimes two). Your journey isn't going to be linear, so try not to compare it with other NICU babies, and especially other babies born at full term.

Make sure you arrange for accommodation close to the hospital. In Australia, they have parent support coordinators who help with this, check with the hospital if they've got any provisions. Sleep well through the night, drink plenty of good fluids and maintain a healthy diet - esp mum if she is keen to breastfeed.

Don't Google everything, it's hard to resist the impulse but when you something that's new to you, probe the nurses and doctors as the first resort. If you have questions shed all inhibitions and ask.

Finally the one silver lining for us from our NICU stay was that we had already become very adept parents. Nappy changes were a breeze, we started understanding her cries, and if in doubt we had the nurses clarify things. They also kept her on a strict 4 hourly feeds schedule which we've maintained so far at home. She's become really good at putting herself to sleep because who is going to pat and hold your baby to sleep each time at the hospital? Small silver linings that are quite far away for you guys, but I did want to spell them out so you can draw hope.

Wish you the best.

 

[jrbauco21]

@bennycross315 Don’t be afraid of therapy or asking for help, and your wife too. NICU can be taxing on you emotionally along with physically. The first few days/weeks you may not be able to hold baby. They’re so small and delicate that touching can overstimulate and hurt. This was hard for me because allllll I wanted was to hold him. The nurses will give you advise on hand holding, and gentle touches. Don’t be afraid to ask questions, even if you feel “dumb” or “silly” or it’s a repetitive question. I probably asked the same things several times due to being overwhelmed and exhausted. Best of luck, little baby and you and your wife are in my prayers.

 

[templar2012]

@bennycross315 Hey Brother. My son was born 25+5 in May, but was able to come home recently. Other commenters have done a great job covering most stuff. It's a long, hard road in the NICU but you can do it. One day at a time. Hang in there.

 

[mohel]

@bennycross315 I'm a former NICU dad. Two years ago, my twin boys were born prematurely and we only got to bring one of them home. I think the most helpful thing I can say is this:

The night we got the call that it was time to come to the hospital to say goodbye to one of our boys, my wife and I looked at each other and made a really simple promise: That we would do whatever it takes to eventually be okay. We wouldn't pretend that our world wasn't falling apart. We would allow ourselves to be devastated by the loss, but eventually we would be okay.

You're going to do what you need to do during this emergency time. You're going to take care of your wife and be the one who is physically able to be up at the NICU every chance you can. But one day you'll bring your daughter home and you're going to be emotionally and physically exhausted. That's when the temptation to choose things that might not be in your best interest come in. Temptation to withdraw emotionally. To anesthetize with alcohol, or food, or sports, or video games, or whatever it is you normally use for escapism. To refuse help. To start thinking of yourself as a bad father because you felt so powerless for so long. You and your wife need to promise each other now that no matter how things turn out, you're going to choose the things that will bring healing. Talk to a counselor. Let people bring you dinner. Cry with your friends. Be honest about how you feel. Let the pain bring you and your wife closer, rather than drive a wedge between you.

I'm happy to say that our family is thriving now, two years after losing one of our boys, and almost losing the other. The little boy who survived is doing great now. Full fledged two year old with a big old belly and a great smile. I like to think that the little one we lost would be proud of us for the home we've built for his brother.

 

[islandray]

@bennycross315 We had a 25+5 last year in April. Rough start emergent c-section as well. Best advice is this is a rollercoaster and a marathon not a sprint. To your main questions everything will be day to day until its not and that will take a long time. We did 85 days in NICU. Best case scenario is you go home on original due date. You will go through a series of cardiac scans during 1st week of life to check for PDA’s. This is normal during early days. You will also go through a few very scary brain scans to check for bleeds first few weeks to check for IVH. You will experience many breathing assistance devices and focus will be on strengthening lungs. Some will lead to belly bloat so lots of belly xrays are normal. #1 important thing. Find a Nurse you and the wife are comfortable with both day and night and ask them to “primary” your baby. Its a big ask but the continuity of care is very important. Secondary its very important if possible to be there every day for as long as possible. We spent 7.4 Million seconds in NICU but understand everyone cant. Our outcomes far exceeded the average due to that presence. By observing nuance every machine reading manuals you can detect animolies nurse and doctors will miss. Make sure you take time to eat and get some sleep. Also use these forums to touch base. I recommend making a microsoft onenote journal and log all the key variables a small paragraph after doctor rounds in am and give close friends and family access. I found it tramatic giving all the daily updates over and over without being able to breathe myself. Also understand this will likely be the most trying time of life you have yet faced and you will have to repair mental health down the line. PTSD will unfold in the form of seconds over the next several months and build. Understand this is a marathon and take it a day at a time an hour at a time a minute at a time and sometimes a second at a time. Keep that journal and make sure you celebrate every small victory. Feel free to reach out if you have any questions. All babies are unique but were in the same 25+5 club. Last note don’t let your wife or yourself beat yourself up about what you could have done differently. The answer is nothing sometimes these things just happen.

 

[mccouchsky]

@islandray Hard disagree with "it's important to be there every day for as long as possible." To suggest that parental presence above all else will contribute to a better health outcome is an unfair assertion, especially to the many parents who have to work, have other children, or simply are struggling with mental health in a very difficult situation. There are many cases in which it is necessary to have time away from the NICU - and to suggest that parents would be sacrificing their child's health outcomes, when it may for the sake of their own mental health, feels very fraught to me.

 

[gisellemartinez1]

@mccouchsky Definitely agree. My advice is to give yourself grace to be there as long or as short as you need. A NICU stay at this age is a long haul (best case scenario) and it benefits no one to burn yourself out.

 

[canonef]

@mccouchsky Agree, that's just a cold-hearted take, honestly.

My husband and I both work full-time. He had to be up early, I couldn't drive, so we visited every single day, but could only visit for half an hour to an hour on weekdays, and I spent 4 to 6 hours there on weekends.

We just couldn't do more and it did make us feel guilty, especially when nurses would "remind" us when his care times were. We would cry sometimes on the way home because we didn't want to leave, but we had to take care of our home, selves, pets, and get some sleep for work.

It would've crushed me if someone implied or told me that I was risking my son's health and wasn't doing good enough when I was doing my absolute best given the circumstances.

 

[diagon]

@canonef Our situation was exactly the same, it feels like I wrote this myself! We all have to do whatever we can to get through one of the most difficult things you can face. If I had been at the NICU for more than a couple of hours each day my mental and physical health would have suffered a lot more. There was also literally nothing we could do a lot of the time but just stare at our baby in the isolette. Until some time had passed and he could be held regularly, there was really no point in us being there torturing ourselves staring at him for hours!

Some of us also have long commutes to the NICU and not everyone can stay at the Ronald McDonald House! And some NICU's don't have them nearby. We had a 3-hour round trip drive to the NICU every day, my husband was trying to do most of his work hours every day, all while our cat was dying. It was the absolute most difficult time of our lives and it felt horrible to not be with our baby more, but it was impossible to manage it all. And I was trying to pump every 3 hours even though we barely had time or energy to cook and eat and take care of ourselves at all. Some people have to do this all with other children at home, that I cannot imagine!

 

[lostandinsecure]

@islandray Hard disagree on the being there all the time. It would seriously negatively affect mental health to do that too. Due to covid regulations in my country at the time, I wasn't allowed to visit at all and saw my babies only 3 times during their 3 month NICU stay. My 26 weekers came home after 83 days and are on track with adjusted age for development with no serious health complications. It's sometimes straight luck of the draw. Babies need parents who are mentally and physically well and both of those things require significant time away from the NICU.