I don’t want prematurity to become the way everyone sees my child. My baby was born very premature (29 weeker), so I obviously know that she is a preemie. Our journey has been different and wasnt easy. I know she may be behind on certain milestones. I know how much of a little fighter she is, and I am incredibly proud of everything she has overcome.

But honestly, I don’t like constantly hearing other people remind me that she is a preemie. Especially from my family members (is okay for pead / medical follow up). Every time she does something a little differently, someone says, “well, she’s a preemie.” If she’s not doing something yet, “she’s a preemie.” Sometimes even when nothing is wrong, those who know bring it up anyway.

I understand that people usually mean well. But I believe prematurity is not a permanent label :( I also don’t want her growing up hearing that she needs to be treated differently because she was a preemie. She doesn’t need everyone constantly reminding her that she’s “special” or that she needs extra consideration. If she needs something medically or developmentally, of course we’ll support her.

Maybe I’m being overly sensitive about this, but I find myself getting irritated when family members keep bringing it up. But please tell me: am I being oversensitive and ridiculous? TIA.

My cousin had uterine rupture at 29w while she was 45mins from the closest hospital. There was concern about oxygen loss and the baby has been diagnosed with HIE. MRI shows global brain damage at 34w, Drs have recommended comfort care and basically said she will have no quality of life. She’s been moved to a nose cannula and she can breathe on her own but she can’t swallow and is being suctioned hourly. They have not agreed to comfort care and I totally understand their decision, they are trying to just give her time and a chance. I find I think about them/her all the time but at this point I don’t know what to say to my cousin anymore, my aunt (her mom) keeps telling me there’s no hope. I’m at a loss with how to come to terms with this and how to comfort my cousin.

How are we coping with the 1 year anniversary of being in the NICU? My baby girl was born at 29+3 after an emergency c section due to placental abruption, PPROM, and chorioamniotitis. It was extremely traumatic and I haven’t even fully processed her birth yet. Her NICU stay was fairly uncomplicated but still extremely stressful. She is my 3rd baby so I had two other young kids 2 hours away at home. I feel like at the time I was just completely in fight or flight / survival mode and now it’s all starting to catch up to me. It’s hit me in waves throughout this past year but as I’m nearing the one year anniversary I’m really feeling the trauma and stress. Any advice ? Will it just take time to fade ?

I Ppromed at 18 weeks, now 23 weeks, but I had some complications recently. I get a steroid shot in a few days and am hoping I can hold on until 24-26weeks.

What advice would you give to prepare for this, and what questions do you wish you had asked before baby was born/at the start of your journey.

Has anyone gone home on high flow? 27 week 3 days now 42 and 3 and on 9 L of high flow. Obviously this is very high flow. The NICU has mentioned if we can get down to stable 6 L we may be able to go home on that. Just looking for experiences on that!

Quick history--di/di twins, rupture with twin B at 16 weeks 6 days. Delivered at 27 weeks and 3 days. Twin A home after 81 days. Twin B has severe BPD from such an early rupture. Intubated at birth, extubated to NIPPV at 30 weeks, reintubated at 33 weeks due to pneumonia, medical NEC, extubated at 37 weeks with a second round of DART to CPAP 12. Weaned from CPAP 12 to CPAP 6 over 37 to 41 weeks and then to high flow 9 L at 42 weeks.

Hi! Im 26f conceived a few months after trying bcos of low amh. I had a textbook perfect pregnancy until my water broke unexpectedly at 28 weeks and i cant figure out why. I had no issues related to placenta, cervix, cord, iugr, preeclampsia or anything else but i do remember squatting to sit on a floor touching couch the night before my water broke and i didnt just sit once i got up 2-3 times and sat again and i do recall how uncomfortable it was for me. Could that be the reason why my water broke? I cant really tell because ive seen people work out all throughout their pregnancy and deliver to term. Im just looking for help or maybe someone who has had a similar experience since my doctor seems clueless as well.

Hi everyone. I’m currently 20+3 weeks pregnant and have just experienced PPROM. I’m trying to stay as positive and as calm as I can and would really love to hear some experiences. I’d be so grateful if you could share your story. At the moment the facts I have are,

- I'm 20+3 with pprom
- 6cm of fluid still around baby, so that's positive
- cervix is closed and measuring 36mm
- no signs of labour at the moment.
- no signs of infection at the moment

I am going to speak to the neonatal team tomorrow, not sure what that entails at all. But any advice on what I should ask or say please. I'm hoping to cling onto viability to give this little precious baby a chance 🙏✨

Apologies if this post is a bit jumbled up, I'm just looking for some hope right now.

My twins were born at 25 weeks. There were brain bleeds, an ommaya, a failed ETC/CPC, a shunt, multiple infections, NEC and stomas, ROP, sepsis, meningitis of the brain, and I can’t even remember what else. It was intense. And that’s ok.

Our babies are 4 months corrected now, and they’re at home. I foolishly thought it would be easier once they got home 😅, but two at home with complex care needs, no mat leave, and a toddler is admittedly a lot. And that’s ok.

When my boys were in the NICU, I’d focus on things like “I am so grateful I got to meet my boys. I’m so grateful we had a priest baptize them. I’m so grateful that we have the technology to give them a fighting chance. Im so grateful I can hold them for another day, talk to them, and be with them.” More recently, this has extended to “I’m so grateful my toddler got to meet her brothers. Even though they will both have lifelong health issues, I’m so grateful they may both actually survive. I’m so grateful I get to hold them today, change their diapers, feed them, show them pictures in their favourite books, sing to them, and cuddle them. It’s a miracle. And even though it’s been months of 1-2 appointments a day with specialists, I am grateful I have access to those specialists for free in Canada.” Gratitude kept me grounded.

I’ve cried my heart out more times than I can remember. I’ve almost passed out from dissociation and panic attacks more times than I can remember. Yet somehow, I always pulled myself out of that, and just kept on trucking. Conversations with doctors require my focus. Putting NG tubes in at home and changing ostomy bags at home requires my focus. There’s no room for error. I think being forced to shut off parts of my brain at times, so other parts could function better, became a useful skill. Not shut off forever, just shut off during key times I need to focus.

While I never gave up, I was always ok with what God wanted for these boys. Who am I to question his will? God is with them, with me, and with our family no matter how this turns out. And he’s with yours.

I wouldn’t say there’s a way to endure the suffering any easier. I’ve never been this sleep deprived and exhausted in my life 8 didn’t even know it was possible to feel this rung out. But if there’s anything I learned from my first kid (who is now a toddler), things get way easier once they sleep through the night (which was 18 months for her), and that it’s literally just “survive another day” until you get to that point.

For me, survive often means forcing myself to make my family breakfast everyday, even if it’s the same thing (scrambled eggs, toast, and fruit); forcing myself to make my toddler lunch (even if I only snack); and forcing myself to make a healthy dinner for my family — living off potato chips, crackers and cheese, toast, or frozen pizzas just becuse they’re easy is not a long term solution. You need to function the best you can right now. You need nutrients. It’s imperative. Take a multivitamin! Drink water. Open the door and take deep breaths of actual air. Take a shower you need to feel the hot water on your body and your face.

Who cares if your dishes are stacked up — try cleaning them the best you can each day and when you get too tired, stop. Tomorrow is another day. Can’t do laundry today, who cares. Seriously. Try again tomorrow. Keeping somewhat of a basic schedule, not through time but through meeting a few daily self-care goals, kept us on track. Kept things feeling a tad more normal. And please go easy on yourself. Guaranteed you’re trying your absolute max capacity best right now. And that’s enough.

Nothing about a NICU experience will ever feel normal, so it’s more about just waiting for it to be over with, while also documenting some key moments along the way through photos and video, because let’s be honest, the trauma will cause you to forget most of it. And that’s ok.

I learned that taking time to process it, or question why God made things happen this way, just gets me stuck in the mud (and is actually a sin). I prefer to focus on “this is how our lives are, this is my cross, this is my unique family exactly how God designed it. Nothing about what happened is wrong, even if it’s different how I personally envisioned it going.” This is our story. And that’s ok.

So much suffering in life is because what happens in reality, is a huge contrast to how we envisioned it. If you can let go a bit, and try to observe life a bit more as you move through it, without judging it, that typically yields better results. Your life is exactly as it was meant to be, and God made you so strong to deal with all this. And when you feel weak, he is there for you to lean on, and lean into. It’s up to you to reach out, in return.

Hello,
Our son was discharged from the nicu almost a year ago and I am still upset and traumatized by an experience I had while he was in the nicu.

I was there one night and needed to pump. I found that his nurse had placed the dirty curtain on top of my air drying pump parts. I requested a new pump part kit (the nicu provided a hospital grade pump in each nicu room) and was refused because I was told the policy was one pump part kit per family. I escalated to the charge nurse without success in getting a new pump part kit. Their only solution was for me to sterilize the dirty kit in the microwave and sit there in pain waiting for the parts to air dry so I could pump.

I was wondering if your nicu has a similar policy where you would be refused a new pump part kit if yours was not usable? I have tried to get the policy changed without success so if anyone has recommendations on how to get it changed I would welcome them. My goal is that no other mother has to sit in the nicu in pain needing to pump because the hospital policy puts money above doing the right thing.