r/NICUParents

We haven’t been to the NICU in over a week to visit our son because we got sick. And not all at the same time. I got a heavy cold, and the day my fever broke, our three-year-old came down with it. His fever broke last night, now my husband is coming down with it.

Our 26wk-turned 37 weeker had his first bottle yesterday, and I’m very sad and frustrated to have missed it. I asked the NICU to take pictures and save the bottle for me, and they say they have. I feel like such a child for feeling, “but I wanted to be the one to do it!” Fed is the goal, there will be more bottles, one day we’ll try nursing, we’ll get so many other firsts… But I’m still upset because I was using his first bottle to encourage myself as something to look forward to when he wasn’t weaning well off the oxygen. And I missed it. I don’t want to miss anything else.

Our 23+5 is now 9+ months old and home.

We go to an endocrinologist for to his OOP and lack of calcium/phosphorus due to no third trimester. He is almost 11 pounds and failure to thrive technically, but very happy kiddo these days. Eating is getting better and he is on a 30 cal formula called Fortini that is work long well to meet his demands.

Our doctor is fine, but I really don’t know how to best use his time. It seems like we just visit, give small update, he asks us to take blood work (always awful experience), then tell us that he is progressing…

Any advice on how to have the best experience with endocrinology? Or questions that I maybe should ask?

It’s tough because we live an hour away from doctors, so our appointments with him have just seemed like a waste of time to be honest.

Just wanted to try and reset my expectations with other’s experiences.

Thank you 🙏

I know this is going to sound SO petty, but I’m at a point in my NICU stay where we’re so close to getting home but it still feels so far away. My ex 29+2 baby now 37+1 is doing great, she’s jumped all the hurdles and now it’s just down to getting suck feeds down so we can go home, the issue is I’m really struggling with breastfeeding and I’m starting to feel like it’s me holding up our progress.

I was sitting next to my babies crib crying trying to get her to breastfeed, but tbh we both suck at it right now. In the meantime another mum two babies away is sitting there boasting about how good her baby is doing at breastfeeding and that they both just seem to be naturals. I know she meant no ill intent from this, she was just talking to another mum in the room but it made me cry even harder and feel even worse than I was already feeling.

The NICU we’re in is open plan and there’s no where to go to try and breastfeed in private given we’re still hooked up to monitors and all that. I know this is a me problem, not a her problem but it made me was to instantly disintegrate into the ground and made me consider not breastfeeding at all. I’m just emotional, this has been such a painful journey from start to finish and I just don’t want to be here anymore, I want to be at home with my little one. I don’t want to learn to breastfeed in front of a room full of mums, dads, and nurses. I don’t want to hear how well everyone else is doing. I’ve been here 12 hours a day for the last 8 weeks and even after spending 7 weeks going up and down on respiratory support and finally coming off, it feels like this is the hardest hurdle for me.

So any tips on how to not let other people’s successes in the area you’re sucking at bother you so much? I don’t want to go back into her room now, I feel like a failure.

My 29 weeker is 37 weeks now, and still requiring low flow oxygen. He’s all bottles/breasts but has failed room air 4 times now. I’m starting to lose hope ☹️ I’m tired of hearing that I need to give it time even though I know it’s true.

Sincerely,
A mama who can’t stop crying

I don’t mean to offend those that find comfort in praying or for people praying for them. I am not one of those people and let me tell you I am so tired of being told “I’m praying for you” during this experience with my twin boys being in the NICU.

I am also tired of “Praise the lord!”, “Thank you Jesus” and “God is great” whenever things are going well for my boys.

All of these people that are saying these things know me well enough that this is not comforting to me and it’s happening so excessively now that it feels like they’re trying to use this situation to try to “bring me to god”.

I don’t want prayers anymore, I only want my babies at home and hide to from the world.

My baby girl was born at 34 weeks and is now home at 36 weeks. The discharging doctor stated she needed poly vi sol multivitamin (A, C, D, B and iron), where as the pediatric doctor she saw the day after discharge is stating to only use the tri vi sol (A, C, D). She is getting breast milk via bottle.

Has anyone gotten a prescription for poly vi sol for their preemie or told to take tri visol instead?

I’m getting conflicting information between these two doctors.

Thanks

I am writing this out of frustration and fear and sadness and hoping any other parents can comment anything helpful.

I FTM gave birth a little over 12 hours ago to a full term baby (40+5 weeks) after 54 hours of unmedicated labor. I prepared so hard to have my dream physiological birth and dreamt of immediately bonding with my baby. She had a beautiful birth and was born in her sac! An incredibly rare mermaid birth! I was so excited to meet her after so many months spent growing her and days laboring but she spent not even 30 seconds on my chest. She was whisked away immediately to NICU due to meconium aspiration and respiratory distress. Apgar score was 4 then 5. She just couldn’t breathe at all on her own without O2 support.

At first they said a few hours in the NICU and they would bring her back to me. Then she was diagnosed with PPHN and pneumothorax. Then the said she could possibly have congenital lobar emphysema. Diagnosis keeps changing every few hours it seems. Her pediatric specialist is grateful though and has visited us frequently with updates and she had some mild improvement but that was it.

I know that she needs this care and I’m grateful to her providers. It is so heartbreaking to not have had a baby with me. No golden hours, no skin to skin, no time to even meet her before she was ripped away from me. I’m struggling so hard to not have my baby.

As soon as they would let me, my husband and I went to visit her. It’s absolutely heartbreaking. She had a breathing tube and we can’t pick her up or hold her because she needs to stay strapped on her left side where the potential pneumothorax is. As soon as she heard my voice and felt my she struggles to cry but has a tube in and becomes distressed and her heart rate goes up a ton and I’m afraid that it’s stressing out her poor little body. She has to be sedated to be comfortable

We are devastated seeing her like this. I want to visit her obviously but I can’t spend all day there. Emotionally or physically. Sounds selfish but how can I even visit her if she becomes upset at my touch and voice and I can’t hold her? I’m just supposed to stare at her in this little box?

This is next level difficult 😞. Can anyone share stories of babies being okay after any/all theses conditions?

I’m at risk of vasa previa and all I’ve been told is that I’ll be looking at a pre-term delivery which has a very good chance of a NICU stay for my baby.

I’m wondering if anyone else has a vasa previa delivery story to share: how early did you have to get your c-section, and how long did your baby need to stay in the NICU?

And he smiled at me when he finished.

An ex 25 weeker who came home with an NG tube, he's now 7.5 months corrected. We are not even actively weaning him but his intake has been improving slowly.

I know it will fluctuate and he's not losing the tube yet, but we are absolutely over the moon.

I’m looking for advice on how you felt more connected to your baby in NICU? My baby was born at 31 weeks. He is now 2 weeks old.

I’m struggling to feel like I have a baby. I’m pumping and delivering milk for him. I go and do kangaroo and help with diaper changes but overall I just feel like I’m providing a service rather than being a mum.

How did you find ways to humanise the situation and help to make it feel like you’re a parent?

This is my second child and I thought that the connection would come quicker this time but I also wasn’t anticipating an early arrival and the current situation.

Any tips will be greatly appreciated 🥰

Hello Everyone,

My baby was born at 28w4d and is now 36w2d, weighing 2340g today. She’s been doing really well recently and honestly felt very close to discharge, so now I’m overthinking everything.

She started oral feeds about 11 days ago. At first she could only do 1–2 bottles a day, but now she’s usually taking 5 out of 8 feeds orally, sometimes even 6. During feeds she has had a few dips here and there (maybe 2–3 times total since starting bottles), mostly heart rate drops, and the team didn’t seem too concerned because they were related to feeding coordination.

But yesterday something happened that scared me. She had an eye exam (she’s had 3 before this with no issues), and afterward she had a bigger episode where her heart rate dropped to the 50s and oxygen dropped into the 70s. It wasn’t during a feed.

What’s making me anxious is that she hadn’t had a real “spill” in almost 2 weeks before this. Before, if she had events, they were usually just brief heart rate drops while feeding and only happened 3 times max.

Now I’m worried this means she’s not actually close to coming home anymore. Has anyone else had their preemie suddenly have a bigger desat/brady after doing really well, especially around eye exams or around this gestational age? Did it delay discharge by a lot?

I know preemies can be unpredictable, but I’m feeling really discouraged today.

Our baby is 9 months old now and has been out of the NICU since she was two months old, one ish month adjusted.

The one thing that kept me going even when I wanted to question everything I believed in, God and everything in between was this:

What will I say when she's older and asks about when she was born? What will I want to tell her about her NICU stay and how her daddy and I felt about her? What will I tell her about her home away from home the first two months of her life?

I can still have my trauma and my sadness and my anger. But I wanted to tell her about the good times. I wanted to make good times to tell her about. And that's what we did. We watched a football game on a Sunday at the NICU and had a mini party. Daddy went for special midnight feedings after work. We brought her more clothes and toys as she was able to wear and use them and started to decorate her shelves in her room.

I know everyones experience is so drastically different but I wanted to post this anyway incase it clicks for someone else's brain the way it did for mine. Because for me it was the first time I felt I had some control and could do something to make some of it feel even just "ok" for the time being.

My former 28-weeker, now 6 weeks adjusted, just freaked me out. 😅 I never noticed his soft spot before and I just realised it's enormous! My daughter's was so small compared to his. I know the doctor's checked it daily while he was in the hospital and nobody was ever concerned, but I'm concerned now. 😅 Is it meant to be bigger than a normal baby's? It reaches the top of his forehead and is as wide as the top of his head.

Mom to a preemie, just wanted to share that my little sister accidentally called my son a “premium” baby instead of a “preemie” and it ticked me to no end 😂

My son is now over a year old, but he was born at 31 + 6 after I PPROMed at 28 + 5. He spent 33 days in the NICU before coming home. All things considered, we are very fortunate that he is doing well. My frustration lies in the challenges we've been facing and the fact that no one in my circle seems to understand or relate. My son has already completed 6 months of physical therapy and just started both speech and occupational therapy. He is just slightly delayed in language and really struggling with solids. Food has been an ongoing battle for many months. I worry about his progress and how much of it is related to his prematurity. When we have really tough days, I have a very hard time regulating my emotions. The stress feels overwhelming. I've read about how NICU parents are in survival mode for so long that their emotions finally surface long after they leave the hospital. Many of my friends who are moms just can't relate. I'm met with "oh, that's weird" when describing my emotions, my concerns shrugged off, or friends who just haven't experienced the challenge I'm facing so they have no input whatsoever. It feels like they have everything figured out, even though I know that's not fair or true. I have a village around me, but I didn't think I would still feel so isolated in our situation.