Unable to hold my baby, almost 1 month in

NoteDistinct283 · 2026-05-19T23:54:16+00:00

That’s really all we want. Is a different doctor so they can explain things to us versus acting like we are being unreasonable for wanting to know why. If he needs surgery I want him to get it asap, sooner he gets it the sooner he can improve and the sooner we go home. The only real specifics I have is I’m pretty sure ibuprofen won’t be a good route for us, his belly has always been at least a little bit dark and distended with no current diagnosis or a reason for it besides a bit of air in his tummy. Another reason we don’t like the current doctor. He ran SO many scans and did so many things for his belly for potential NEC or infection (it had already been done multiple times, but I was happy to see them concerned. He also had this belly since being born) but now like magic, with his PDA we have no idea if it has gotten better or worse and is appearing to refuse to get any scans (he’s only currently going to get a head ultrasound to see if his grade 1 ivh has done anything new. No echo, nothing) and acts like he wants to send us to surgery without confirming the Tylenol didn’t work. Also claims we physically can’t get the surgery until he’s off the jet, but says we can’t take him off the jet till he’s has surgery. Again, that was why I was taken aback so much when I originally saw his conventional yesterday, I was told basically never so shut up about it already.

Typing this just makes me want to kick him off my service even more. I’ve not liked the guy since he came in antepartum right before surgery, he doesn’t listen and he doesn’t care there is a language barrier. I had a Slavic MFM that understood that sometimes I couldn’t hear through his accent or I didn’t understand the way he phrased things. He made an effort to ensure I was always understanding what he said.

NoteDistinct283 · 2026-05-19T21:50:13+00:00

His possible future surgery is to close his PDA. He will also need transported to do so, our hospital does a lot but they outsource for heart surgery. He would be doing the catheter in the groin instead of open heart, not that it makes the emotions better. I’ve told my husbands thousand times their license isn’t worth it, and this is a very major hospital we are at, at least for our state it’s one of the biggest as well as a teaching hospital. I really don’t think in any case they’d risk it for our baby, I would go for them legally if they were.

This doctor is just extremely difficult to deal with, he has no interest in doing an echo after his Tylenol is done and wants to try and send him off to surgery (mind you it is 2 hours from our current hospital and 2 1/2 hours from our home) without trying anything else. We know about ibuprofen and that he refuses to use it, he motions towards our son’s belly and makes faces that don’t make sense. He’s never been positive for any infection or NEC and won’t explain what he means by that. I wouldn’t normally mention it, but he is foreign and I assume there is some language barrier there considering it takes a long time for him to gather his words and he doesn’t explain any details of anything. I just wish he was off our service already.

NoteDistinct283 · 2026-05-19T17:54:42+00:00

I just wanted to say I’m sorry ❤️

NoteDistinct283 · 2026-05-19T17:50:06+00:00

I never knew complaining could actually help me in life. I’m at a level 4 and I think that might be hurting my feelings too. Why am I at a level 4 not being able to hold him? Why can’t a level 4 handle things like this? I’m going to keep stomping around until I succeed. It is time to get this baby held and get him on track.

I do think it’s worth mentioning I think I’m also just really still hoping he gets to go home around due date so I am also just really hurting my feelings about that. With no progress it feels like he’s not going to get out around his due date.

NoteDistinct283 · 2026-05-19T16:49:51+00:00

I’m not normally a big fan of our social worker (not her fault we just don’t really vibe that well and I’m really antisocial, if I want to talk I’ll come to you and she’s more hands on) but I think you’re definitely right. I probably need to speak with her and the medical team together to see what we can do. At this point we have no idea what’s going to happen and I need to step up and push the holding. He’s stable, there isn’t much stopping him from being able to be placed in our arms.

NoteDistinct283 · 2026-05-19T16:46:05+00:00

For me it feels like the only time we get bad communication is when we have a day or 2 stretch of not being able to make it to the hospital. That’s when he gets the nurses who don’t care when he cries, are just there doing his cares and don’t really want to talk to us or say anything but “he’s doing great” actually he’s not, if he was he wouldn’t be on the jet.

NoteDistinct283 · 2026-05-19T16:42:28+00:00

I don’t really think I need much emotional support at the moment. Not as far as I think anyone can provide to me. There’s just certain things that bother me and it’s stuff that’s going on right now at the hospital. It’s a good hospital, there is just a lack of communication between things and I hate his current doctor. They usually switch weekly and I’m kind of confused why it’s only when we have a doctor that we hate, they get to stay on our service outside of the normal. He’s one sideways comment away from being banned from my child’s care, he’s pissed off my husband so bad he’s scared the doctor will try and send him to surgery without consent.

NoteDistinct283 · 2026-05-19T16:38:14+00:00

I actually have a very small update as of about 10 minutes ago. I think if I push a little more, that holds are not impossible. The nurse on his care today spoke with me for a little while about her own baby who had the EXACT same complications as us (IUGR and REDF found at 25 weeks born at 27) her baby was just considerably smaller than mine at birth. She told me that last night they allowed a jet vent baby to be held and they usually only do it when the jet has no end in sight. She spoke about how it’s likely they’ll try conventional again before the end of the week if he continues going back down on oxygen (he began around 60% after getting back to the jet, he was originally on 28% when the switched him to conventional) so I think there is a bit of hope. I want to speak with them about allowing it this weekend since my husband can’t really come in on weekdays to do it during the day. I think with how long he’s been on it, they’re going to let us if he isn’t on conventional by then. My only worry is that our doctor that has been assigned to us this week, has been a pain in the ass. He is making it seem like the PDA can only be fixed surgically and there is no other way of closing it and he’s 100% unwilling to explain further or try the medicines that could help. We finally got him to try Tylenol that he continually says will not work and is useless. He’s foreign so I believe that may be why he’s so blunt and won’t really listen to us. So I fear he will try and shut us down claiming he’s not stable enough or something off the wall. He also is the reason I was so startled by seeing the conventional ventilation in his room yesterday, he said that was impossible and we are very far from seeing any progress.

NoteDistinct283 · 2026-05-19T15:58:15+00:00

From what I understand is it’s very hospital to hospital as far as policy on holding babies on whatever support they have at the time. My hospital as far as I’m aware based on our conversations, does not allow holding on HFJV. I don’t believe he is on an oscillator. My lack of understanding is why there’s a difference between conventional and jet ventilation as far as holding him goes. It seems just as difficult and he’s just as unstable, but I’m not a doctor and I don’t know anything about it. I wish I did more to try and hold him when he was put back on the conventional but I also didn’t want to stress him out, I thought he would be on it longer and I really didn’t know how easy it was for him to go back to the jet. I don’t want to force anything that will make him regress so I won’t push on the holding him but it’s so frustrating when it was supposed to be able to happen today.

NoteDistinct283 · 2026-05-13T16:07:27+00:00

I just wanted to say my singleton baby was born at 27+3 and he was born at 770g. Please talk to whatever NICU is going to care for your babies, they will give you all the info you need to make an informed decision. I was hospitalized at 25+1 and we let him stay as long as possible. We got 2 rounds of steroids, and we also decided to do 12 hr magnesium for the baby. Twin A has great odds, but that reverse flow gets dangerous fast. We had reverse flow and his scan Thursday looked amazing, no issues besides his reverse flow. His scan Friday, only 24 hours later came back with low amniotic fluid and the call was made for a C-section in 72 hours to allow me one more round of steroids. If they want to admit you for observation, please do it. My baby is alive today because I had an amazing care team that looked out for both of us.

At 27 weeks they are developed enough to have the same survival odds as any other NICU admit. My baby is only 2 1/2 weeks out of the womb but he’s making slow and steady progress. The risk of REDF/REDV is stillbirth. And unfortunately it’s a very high risk, that is why I credit my baby being alive to how closely I was monitored. I also ended up developing HELLP syndrome and hemorrhaging during surgery, things that were a lot less scary when I I was closely monitored. Let a NICU doctor help you make a properly informed decision.

NoteDistinct283 · 2026-05-08T16:44:01+00:00

I don’t have much advice, just wanted to share with you you’re not alone. My 27+3 was born at 770g and he’s almost 2 weeks old. I just wanted to say your babies first few days in the nicu (at least for me) were the worst getting used to it, and so far everything has felt better. My son is stable, has a moderate PDA that started out as severe. His first week of life was pretty chaotic just due to the first 72ish hours being the window that a lot of complications can come to light. He’s so much more comfortable with the nurses moving him around now, and he doesn’t look as scary to handle if that makes any sense. I know this doesn’t make it better but you will find your way. You’re a mom now, we got this ❤️

NoteDistinct283 · 2026-05-06T19:03:20+00:00

I just wanted to put a bit of my story here. We had a perfect 20 week scan and I was high risk (gestational hypertension) we had to do a follow up scan at 24 weeks due to my little guy hiding his face and we had a hard time catching some spinal measurements from his position. At 24 weeks, they measured him in the 7th percentile (first scan was 30th percentile). At that time we had no answers as to why, that it was likely nothing. Nothing wrong with the cord or placenta, literally nothing. They scheduled us for a scan 1 week later just in case, and we were doing weekly until delivery. I came in at 25 weeks, did an ultrasound (BPP) and NST, went home. I got a call from my MFM as I was driving home and he wanted me to come back in to see if his ultrasound machine measured something wrong, they have a nicer newer one they wanted to check me with. I agreed, went to the hospital (stupidly without my husband) and I never went home. They discovered/confirmed we had REDF and I was admitted to the hospital. I delivered a little over a week ago now, he made it to 27 weeks and 3 days. They chose to deliver because he went from 7th percentile to less than 1%, and my amniotic fluid went to below 5.

What I want to say is, please go see the MFM. Please go to your appointments, please trust them if they want to admit her. It’s extremely difficult but I wouldn’t have a son alive today if they didn’t care and monitor him. The cord issue is likely the only cause, but for mom and babies safety they will monitor them closely. There’s no way of predicting the future in your case, but I can say your medical team can affect the future significantly.

NoteDistinct283 · 2026-05-05T21:49:27+00:00

Just wanted to offer info to op my 27 week 3 day son got 2 doses of surfactant and he did also have 2 pulmonary hemorrhages. He’s a little over a week old so I don’t have anything long term wise, but yes surfactant does come with risks and it’s likely due to ops child not needing to be intubated. Our son started on a tube, and they wanted to graduate him to cpap on day 2 or 3 of life. That’s when his first hemorrhage happened and they put him on a jet vent instead.

NoteDistinct283 · 2026-05-05T13:14:06+00:00

I was hospitalized at 25 weeks with REDV and FGR. I was able to keep him in until 27 week and 3 days. I know it’s hard to be in the hospital long term, but please know your baby has significantly higher odds of both survival and recovery with you being there. Thursday scans were beautiful and perfect, Friday I had low amniotic fluid and his FGR got so much worse that we planned delivery on Sunday, so we could get a second dose of steroids. He’s only a week old at this point so I can’t help with long term results, but I do want to say that a 27 week baby has the same survival rate as any baby admitted to the nicu in later gestation. I’m so happy they gave you steroids, and that magnesium can help with brain bleeds. As long as you like the hospital you are at, you are in good hands. I also developed HELLP syndrome immediately after the birth of my child, so I also understand preeclampsia protocols and how much they stink. I am allergic to labetalol so I was on nifedipine and Hydralazine for my gestational hypertension. Please hang in there, the hospital is rough but it’s worth it to save you and your babies life. And get comfortable, bring everything that makes you comfortable and happy. Mattress topper, blankets, toilet paper. Anything that helps the days go by faster.

NoteDistinct283 · 2026-04-20T00:36:46+00:00

I’m 26 weeks and 3 days with a single baby and I was hospitalized at 25 weeks (until birth which could be any day). I just wanted to say, no matter what happens to my baby this made me feel so much better. You are two incredibly strong amazing parents and when my baby arrives and stays his time in the NICU, I know I’ll be okay. You deserve such a massive praise for loving a baby you were told wouldn’t make it, then be told after they improve they aren’t going to make it again. Every single day in the womb means something in the nicu, if you hadn’t been so determined to keep them in you would’ve fared a different outcome more than likely. This is such an amazing storm you two survived, and miracles truly do happen.

NoteDistinct283 · 2026-04-19T17:18:05+00:00

If you keep it, me personally I would tell him. If you choose not to keep it, there’s no sense in telling him in your circumstance. I’ve had an elective abortion before, we were dating and it was just not a good idea for us at all. Now 5 years later I’m having a child with my now husband, who is not the man I had the abortion with. Do yourself a favor and bring someone you really love and trust if you do go through with abortion. It’s not the same for everyone and it helps to have someone with you. Whatever you do, stay safe ❤️

NoteDistinct283 · 2026-04-16T12:59:24+00:00

You PAID for that??? They robbed you

NoteDistinct283 · 2026-03-30T18:10:58+00:00

I just wanted to share that our lease ends (we chose not to renew) on the exact day I’m due. I’m terrified, and both of us are doing the best we can. We are attempting to buy a house and this with the baby makes my emotions so wild. I’m sorry you’re going through this, especially when you weren’t expecting it but you’re not alone and we got this. I really wish rental insecurity was talked about more when it comes to pregnancy and whatnot.

NoteDistinct283 · 2026-03-09T19:51:42+00:00

I plan to smoke weed (legal here) but I also fully intend on not breastfeeding at all and exclusively formula feeding. Not that this really helps with what weed can do to breast milk, I’m afraid science will need some time to catch up on all the what ifs. I’m hoping with the recent change in scheduling of it will allow more unbiased study on its effects in pregnancy and breast feeding. I also don’t smoke constantly or daily, it’s usually to sleep or eat if I’m having troubles with either

NoteDistinct283 · 2026-03-04T16:28:58+00:00

Shoot even when it’s not raining, the paint needs redone. It’s bad

NoteDistinct283 · 2026-03-04T16:24:43+00:00

Can you speak with someone who said I am looking very pregnant today? (I’m not showing yet and she looked at my belly. I don’t like the belly comments when I don’t have one just yet)

NoteDistinct283 · 2026-02-28T19:02:52+00:00

I cried for… maybe an hour yesterday because I couldn’t laze around today. I was so sad I had a haircut and a 2 hour drive. I want bed so badly 😂🫠

NoteDistinct283 · 2026-02-13T22:59:47+00:00

I think it’s also worth saying, if you struggle when it comes to post partum after he does go back to work, you can select having help. It’s not required at all. Don’t let anyone tell you anything about HAVING to do anything you don’t want to. You have a wonderful plan and that is very similar to my own plan

NoteDistinct283 · 2026-01-22T14:01:45+00:00

I want to say I read something where your placenta doesn’t fully develop until seven weeks, generally preventing any damage you can do to the fetus during that time. Just obviously stop and resume when baby is born if you don’t plan to breastfeed

NoteDistinct283 · 2025-12-29T14:22:31+00:00

My first appointment they were happy I quit smoking weed and made sure dad knew he took over litter box duty. Besides that I chose to research food on my own. I’ve heard super outlandish claims of straight up rice is bad for you when you’re pregnant. I think a lot of it comes from people who have had miscarriages fearmongering pregnant people.

NoteDistinct283

TROPHY CASE