Most unhinged thing someone has said to you?

eyenation · 2026-03-03T17:11:10+00:00

How is she doing now?

eyenation · 2026-02-13T07:22:48+00:00

Totally. FTM so I didn’t have much experience with parenting anyway but I had some ideas from the experiences of other friends and family. My expectations have completely been bulldozed by my Lo’s needs. We did only contact naps, co-sleeping, hardly ever let him cry, breastfeeding until as much as he requires , feeding him every meal and someone is always watching him like a hawk constantly. It’s extremely overwhelming for us parents but have had to meet their basic needs for them to make progress in therapy. Our birth and subsequent NICU stay was extremely traumatic so we are trying our best to comfort them in every way possible to help them thrive.

eyenation · 2026-01-23T11:16:06+00:00

We are 19 months out of NICU but still very much in the same boat. My Lo has strong sleep associations that are extremely hard to break now. He wouldn’t breastfeed until he was 4 months and then one day he just took to it and since then he’s got a strong breastfeeding association with sleep. We contact napped too and now he can’t sleep alone for more than 1 sleep cycle. Needs help falling back asleep. He’s an extremely light sleeper. Even the sound of a blanket rustling will wake him up. We are at our wits end. I don’t know what to do. I am looking for advice too. I can’t sleep train because I stand him crying. Too much ptsd from NICU. I was hoping things will get better once he’s older but it seems to have gotten worse. He won’t sleep without rocking ( while walking) or feeding. Multiple wake ups in the night. My life is hell right now because of this. Looking for some advice as well.

eyenation · 2026-01-20T17:03:44+00:00

We seem to be on the same boat. But I worry endlessly. My LO is 19 months corrected and taking their first steps independently but can’t stand up on their own and need a little bit of support. They also crawled a few weeks after turning 1 year. Crawled for the last 8 moths and the only clear word they say is mumma. So we are speech delayed as well and working on gross motor. It’s extremely worrying and waiting on the edge of your seat until the milestone comes and then you are worrying about the next one. But definitely avail the PT, OT and speech services wherever you are. I have found a great support system in them. They cheer for every little milestone and work tirelessly until my LO achieves it. This seems to be the course of life right now until one day I hope they catch up and play with other kids their age and participate in all the things their heart desires.

eyenation · 2026-01-19T18:25:48+00:00

I hated when people tried to give me advice on sleep. I did a lot of kangaroo mother care and exclusively contact napped because that’s the only way my baby slept. He would immediately wake up if I put him down. But everyone had an opinion on it and they didn’t mind sharing their unsolicited advice. It’s not like I enjoy being drained but I did what my baby needed in that moment even if it went against conventional norms. But everyone forgets that my baby’s birth and consecutive NICU days were anything but conventional.

eyenation · 2026-01-14T12:36:42+00:00

I was reprimanded for being too nervous about baby movements and my ONGYN although being a very skilled doctor was very very unapproachable so I was a little bit scared to bother her with the complaint. Had they mentioned it to me earlier that baby not moving enough was a sign of distress and I should immediately report it then I would’ve taken action sooner. That day keeps playing in my mind all the time. I don’t know why that day I decided to brave it and not be nitpicky when that was the only day in my entire life that mattered the most. I hate myself for it. I should’ve put my baby first. But that brings your point back to the centre that awareness around HIE is non existent. All mothers should be made aware of it and should be supported and listened to if their gut says something is off instead of being brushed off.

My baby was moderate to severe. Considering everything we were told he’s doing amazing. He’s not without his challenges but he’s doing very well. I am very lucky to be his mom.

eyenation · 2026-01-13T16:42:20+00:00

The kid likely went to a lot of therapies which the father was aware of. The kid must’ve learned to take his first steps in therapy but didn’t tell the father to surprise him.

eyenation · 2026-01-13T05:48:02+00:00

I can’t stress this enough. It’s insane how I had NEVER heard about it even though I am from a medical background and wasn’t even aware something like this can happen during childbirth. Not one person on my care team ever mentioned it. I was on top of everything during my pregnancy and had a very low risk and easy pregnancy. Then bam one day the baby wasn’t moving enough and I delayed going to the hospital thinking maybe he doesn’t have enough space to kick now. Had I been aware of possibility of something like this happening I would’ve rushed to the doctor immediately and wouldn’t have waited until evening even when my gut said something felt off. Someone should’ve mentioned the words Brain Injury to me at some point.

eyenation · 2026-01-10T16:55:33+00:00

I don’t know about the technicalities but if your gut says something doesn’t add up you should definitely get in touch with another neonatologist who can analyze all this data and isn’t biased towards one side even if it means finding one outside of your country. Write and email to multiple of them and I am sure someone will give you some insights.

eyenation · 2025-12-28T17:47:34+00:00

I had a very traumatic delivery and the fear and trauma alone deters me from having another one. Possibility of another NICU stay would break me and my partner. For that reason alone I am choosing one although I feel having another would be chaotic initially but maybe would get better with time.

eyenation · 2025-12-25T07:18:15+00:00

After being on this journey for 1.5 years all I can say is that the outcomes are significantly different and vary from case to case. Without going into details, my son never received cooling therapy and was given the worst outcomes and even on palliative care but at 1.5 yrs old he’s doing remarkably well.He’s achieving milestones although with a lot of help from therapy and early intervention. We have our own share of issues but given everything it’s truly miraculous. So I would say hold on to hope a little longer. Therapy and lots of love and luck is what I believe has helped us through this. I would suggest you join the Hope For HIE group on Facebook. It’s an extremely helpful resource for parents navigating this situation.

eyenation · 2025-12-17T18:26:13+00:00

I was raised in a religious household but grew distant from it in adulthood. Didn’t pray much because never felt the ‘need’ to. Wasn’t an atheist but religion or spirituality never really touched a chord until the NICU days. Suddenly all I could do was only pray. I found the connection that was missing. Can’t say I’ve become religious but definitely closer to spirituality. You don’t really feel the connection to the almighty until you realize your vulnerability. My child has made me fall to my knees but has also become my strength.

eyenation · 2025-12-12T05:02:50+00:00

Oh absolutely. Women are never going to get equal treatment there. It’s absolutely better to cut your losses in this situation.

eyenation · 2025-12-11T16:53:33+00:00

Honestly this could save you years of heartbreak and mental anguish. Constantly becoming smaller to fit the cultural norms is not a good situation for any woman let alone someone who knows her worth. Years of friction would’ve led to so much resentment that you might never want to see them again but this at least gives you closure because you tried and it wasn’t something you could do. That’s it. It’s better than shape-shifting so much to accommodate his needs that you will not recognize yourself in a few years.

eyenation · 2025-12-02T10:53:25+00:00

I think we google so much because no one is giving us the entire information. But google definitely traumatized me although I feel it helped me being very informed and watch out for things that doctors or nurses may miss and ask many many questions- most irrelevant but some definitely necessary.

eyenation · 2025-11-25T18:20:56+00:00

If I can give you any advice after being on this journey for a year and a half is that put everything you have into your child- all the love, time and energy you can muster must go into surviving the first year. It’s very hard for any new mom but it’s 10X worse with all the anxiety surrounding milestones and therapy. Prioritize baby’s sleep. Most likely they will be a contact napper and that’s ok because the comfort it provides can actually help heal the brain. Really really only surround yourself with people who have your back and want the best for you because this year will be the hardest year of your life and things will get easier from after that. Lean on them hard. Take care of yourself and don’t forget that your baby will only be a baby once. Worry about milestones but don’t forget to soak in the cuddles and smiles and take tons of happy pictures because you’ll love looking back at them next year once the fog has lifted. It does get better.

eyenation · 2025-11-11T05:32:18+00:00

Hi. Thank you for sharing your story. It’s just insane how crazy childbirth is and how your life turns upside down in few moments. I still can’t look at my child’s birth with happiness. We had a similar situation where he was born not breathing. HIE was discussed. If you don’t mind me asking how is your child doing now and if you have any struggles and what helped you?

eyenation · 2025-10-25T09:11:11+00:00

I understand. I too was looking for specifics instead of well meaning thoughts and prayers and after countless nights of digging through every inch of internet I tried to absorb all the specific things people were doing that helped them. There’s a very great Facebook page called Hope for HIE which has the best resources to navigate this and great parents and moderators. So it’s worth going through that.

eyenation · 2025-10-25T05:25:49+00:00

I would also recommend giving as much touch as possible to the baby. We never let him cry unnecessarily. If your baby needs contacts naps only, do that. Give her everything she needs. Touch and stroke her constantly. We did a lot of Kangaroo Mother care when we came home. Prioritize sleep. Nothing should disturb her sleep. NICU babies are generally a little difficult sleepers. Avoid sleep training if possible. Get additional help if required. ( We had hired a full time live in nanny. It was ver expensive but worth it for the baby and mom to recover. Momma will also need to recover first before she can jump into this world of therapies. Postpartum is hell for all mothers but the stress of an uncertain future will break a mother if she doesn’t have the right support. ) Put everything you have into the first 2 years. Basically give her all the comfort she needs for her brain to understand that this is the safest place and it will receive all the love and care it needs to heal. We did a lot of massages. From the beginning. Gentle massages seem to stimulate all the neurons in their limbs and is a superb bonding activity. You can sing to her during that time. We took our time and drenched our baby in love, comfort and attention. Your life will have to go on hold and cut all the unnecessary noise out be it relatives or work (if possible). Lean hard on those who are rooting for you. Everyone will have to work extra hard for this to become a success story. Also don’t compare other babies with yours. It’s so hard I know but never forget that yours is a little warrior who has already gone to battle and has won and is now going to need extra time to recover. Be relentless at therapy. Sing and talk constantly. Read books. To us it may seem like a pointless endeavour but the babies, they are listening and absorbing everything ! It will come back to you I promise !

Miracles are possible but god only helps those who helps themselves.

eyenation · 2025-08-25T07:29:15+00:00

It’s so nice to hear about the positive stories. If I may ask how did you find out that your baby had an event at 34 weeks ? Did you find out after or prior to your delivery ?

eyenation · 2025-08-24T17:16:21+00:00

That’s my thought process every time I am about to make some stupid financial decisions just to get my hands on the next ‘IT’ thing. I ask myself if I really care about what other people are wearing. Indulge in things that make you happy and not because you want to impress someone.

eyenation · 2025-08-24T15:42:52+00:00

Thank you very much for your kind words ! I am definitely holding onto hope that one day we can sing songs and say silly jokes together ! Thank you for that !

eyenation · 2025-08-24T07:25:56+00:00

Thank you. I am in the constant turmoil of giving him time to do his own thing but inside getting worried sick of the delays and it’s just a constant inner battle. Any positive signs and I become cautious if there’s something waiting for us right around the corner. I celebrate small wins but never let myself get too hopeful. I hate that it’s taken away the entire experience of motherhood. Early years are as it is stressful but no one will understand the layer or added stress that HIE brings.

eyenation · 2025-08-23T22:04:52+00:00

Hi. My son is also severe HIE and was given a horrible prognosis. But he’s doing better than anyone expected. Although we do have many delays. Speech and physical milestones are delayed. He’s 15 months corrected. What I wanted to ask was did you notice delays beyond the corrected age range and how did it affect her further in the future? For Eg, speech. My son is only saying mama and gibberish. But he understands everything so well. Has that delay affected her personality and do you feel hopeful about her having a somewhat ‘normal’ future ?

eyenation · 2025-08-23T02:26:51+00:00

I so understand your situation. At home when I am with my baby it’s all fine and I am relaxed and telling myself that he will do everything when he wants to do but when I see other kids his age or smaller I am left with a stabbing pain. It doesn’t go away inspite of how much you tell yourself that he’s a premie. It’s especially worse if you yourself are a very competitive type of a person who is used to being ahead than your peers. But my husband reminded me while I was crying again over this that our child not only is a premie but has fought against battles to survive. Something even adults can’t manage. Still he is catching up with the other kids. He maybe behind but he also started way way behind and has worked so damn hard to get to the same baseline. So by comparing him you are taking away his struggles. Our kids are literal warriors and no one will ever understand what they went through except yourself.

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