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Lingering trauma from special care/ neonatal unit?

(17 Posts)
Joolie22 Sat 01-Oct-16 20:53:29

My baby is just over 3 months old. He screams, roars and shrieks in a way that is not like "normal" crying. He does it when he is hungry or unhappy about something and especially if he is tired. Sometimes I don't know why he is doing it. The hv and gp have been fairly useless, telling me that "all babies cry" or suggesting I leave him to cry to self soothe. But you have to see him doing it to understand what I mean. He screams like you are sticking needles in him, as though he is in tremendous pain, it's terrible. Sometimes it goes on for ages and I can't get him to stop. There have been days where he will scream any time he is not asleep or feeding, thus self soothe is not realistic. Also I can't always predict when it will happen. Those who have witnessed it agree that it is extreme crying and beyond what might be reasonably expected from a baby who is not in some sort of pain. My parents have witnessed it and also two osteopaths that I have taken him to. So far as anyone can tell, there is nothing clinically wrong e.g. reflux.

When my son was born he spent his first 5 days away from his dad and I in the special care unit in hospital. Although I am not diabetic, he was a big baby, 11oz and had low blood sugar. This had to regulate before he was released from special care. I visited him there as much as possible but he was fed through a feeding tube, and he was lying in an incubator in just a nappy because they wanted to observe his breathing. I wasn't allowed to pick him up without a member of staff giving permission and handing him to me and sometimes I was not given permission to handle him.

Furthermore, my labour was artificially induced, he went into distress in the womb and was delivered by emergency Caesarian.

I can't help but think that the rubbish start we both had is related to his continued unsettled behaviour. Since getting him home from hospital he screams every day and particularly going to sleep at night. He is slowly getting a bit better but i would love to know if anyone has had similar experiences and if anyone has any suggestions to help him to feel more settled.

Thanks in advance!

eurochick Sat 01-Oct-16 21:01:47

Hmm. I think you should look for another cause tbh.

We had a rubbish start too - a very unwanted planned section that I was hugely stressed about, some post op complications and three weeks in NICU for our daughter. I didn't see her at all for 12 hours post birth as I was so out of it and she was six floors away. I had the same experience as you as not being able to hold her much, despite the walks being plastered about the benefits of skin to skin and kangaroo care. I am not happy about the start but didn't experience what you are describing.

I hope things improve soon.

TeaPleaseLouise Sat 01-Oct-16 21:05:42

Message withdrawn at poster's request.

JinkxMonsoon Sat 01-Oct-16 21:13:14

He hasn't been damaged by his time in NICU smile

I agree that videoing his crying bouts to illustrate the pain he appears to be in is the way forward.

Joolie22 Sat 01-Oct-16 21:17:55

I have been thinking about recording him! Hv and gp haven't seen him at his worst, but staff at the weigh in clinic have and said i should consult the gp. I went to the gp specifically asking about silent reflux. The gp expressed doubt it could be that because he lies flat every night in his cot without complaint. During the night he is actually really settled- most of the time he wakes for feeds then goes straight back down. So it's just during the day and getting him down for the night.. most of the time anyway.

Nonetheless I came away from gp with prescription for infant gaviscon, but I can't say it made any difference, unfortunately.

Every day for the past 3 months i have been googling and debating with my partner and parents as to what might be causing this and how we could help him. My theory that it might be trauma related to special care is based on the fact there are no indicators anything is clinically wrong, and the fact that he fights sleep as though he is scared to fall asleep- and when in special care there must have been so many times he fell asleep in my arms/ with his dad or me there and then woke up and we weren't there...

Playitagainsam Sat 01-Oct-16 22:15:19

I don't know if this is relevant, but my DS screamed a lot as a baby. It was a really blood curdling scream, deafeningly loud and like he was really distressed. I was convinced he must be in some sort of pain and took him to GP's/paediatricians/osteopaths. We tried reflux meds and nothing worked. Someone commented that 'maybe it was just his temperament'. I thought that was utter nonsense, there was no way that level of screaming could be 'just temperament'. Anyway, fast forward to 16 months and you know what, I think they were right. The older he got, the less persistent the screaming was. As a 1 year old he is cheeky, funny and often good humoured. But when that boy loses his shit, he REALLY loses his shit. Often over the tiniest thing, and the scream comes back! If he's under the weather he can easily waste a couple of hours a day just screaming.
I'm certainly not saying that the same thing is true of your DS, but maybe he is just a bit of a screamer like mine? You mentioned that he's been a bit better recently. My DS had a pretty straightforward birth and he was fine (me not so much!) so there was no trauma for him.
It's just a thought, one that I disregarded when it was suggested to me of course!

Playitagainsam Sat 01-Oct-16 22:17:11

PS my DS was a horrible sleeper and screamed and screamed at bedtime and if he woke in the night. Could some good old parental guilt be making you think your DS's screaming is related to his time in NICU?

TeaPleaseLouise Sat 01-Oct-16 22:26:07

Message withdrawn at poster's request.

Eminado Sun 02-Oct-16 03:52:01

Another one suggesting silent reflux. I am not saying you havent researched it but Gaviscon did absolutely nothing for my DD. It was only when we got Ranitidine that the blood-curdling screaming stopped.

Good luck OP.

bigfriendlygiant Sun 02-Oct-16 04:17:38

I agree with previous poster: I think you're projecting the SCBU guilt.

Your ds sounds like my nephew. He didn't leave my sister's side once he was born and was still exactly how you describe.

My ds was a NICU baby. I didn't get to hold him for 7 days and then it was supervised, sterile, clinical (as you describe)... They have no memory or residual trauma of this time... Us mums on the other hand, it takes a while to get over the shock and feeling of hose empty arms.

Joolie22 Sun 02-Oct-16 08:37:06

Thank you very much everyone for the comments. I am totally prepared to believe that I am projecting the trauma of the time we were separated at the start on to him. I am desperately trying to think of possible causes, and ways in which I can help him!

@Playitagainsam did you find anything that helped or soothed him? Music is the main thing that calms my baby down. Literally it's like flicking a switch- mid scream he will stop and watch/ listen to House of the Rising Sun on YouTube! (Not even a song I am huge fan of or anything, incidentally!) That's the other thing that makes me think not reflux or similar- the screaming will stop abruptly. Also really interested to know how you reacted to his screaming. I used to panic a bit, especially when he started the really shrill shrieking as its so distressful to hear you can't help but think he must be in terrible pain. Now I keep calm and try to soothe him. I have also tried being firm and saying "now now, that's enough" also tried just sitting with him and listening to him. The latter approach works sometimes he will tail off and fall asleep.

memememememe Sun 02-Oct-16 09:07:10

From my understanding of trauma the body can hold a memory of it. So just don't discount it entirely. As long as you are there as consistently as you can be this should help, cos that might have been what he missed. So don't do anything different, I just wouldn't depend on self soothe if your instincts are telling you something different, and keep pursuing medical route.

I am coming at this as a parent who is parenting taking early trauma into account. My opinion is based on theory and gut feel. Hope he settles soon. smile

Playitagainsam Sun 02-Oct-16 09:43:31

I don't actually think there was much at all that soothed him, or if there was we didn't find it! He did (still does to sleep) have a dummy and that did help but I didn't want him too reliant on it. The screaming with us was quite random too which made me question the silent reflux thing, although we tried all the meds including ranitidine (cue more guilt for potentially giving him unnecessary meds because we couldn't stop him screaming!). In honesty I don't think I reacted to it at all well, and I found it immensely stressful. It didn't help that we also had to deal with his older sister who was somewhat bewildered by it all. We used to get a solid hour of screaming every bedtime, and also if he woke at night, and even picking him up to hold him would not lessen it or calm him down. That was the hardest part, that he was not remotely comforted by me! But he's still like that now, when he has a paddy he will not want me to hold him and will arch his back and occasionally smack me in the face!!!
I did do a consultation with Sarah Ockwell-Smith who wrote the book about gentle sleep solutions for babies, and over a period of a couple of months that definitely calmed him at bedtime. That might be worth looking into if bedtimes are the stressful bit. I honestly think my DS just struggled with switching from day to night and he needed more help with it all.

Donhill Sun 02-Oct-16 18:55:15

Probably irrelevant, but was his blood sugar consistently normal and good by the time he was discharged? Did it regulate quickly after the first day or so? Does he feed normally now or get hungry quickly? Sorry to ask about the first traumatic days and don't answer if you don't want to, it's just I'm wondering whether there could still be issues with his blood sugar. My ds had ongoing issues with blood sugar so I tend to be hypersensitive to wondering if others do too!! But probably not.

Joolie22 Mon 03-Oct-16 20:50:00

@Donhill yes his blood sugar was consistently normal and good by the time he was discharged, they wouldn't discharge him from the special care unit until it was. I don't think it regulated all that quickly though. I was quite out of it for the first couple of days, but I recall that there was a threshold that his blood sugar had to be over for three tests in a row and then they would leave it incrementally longer between feeds and then he'd need to pass another three tests... Etc. It look 5 days for him to get through that. There were a fair few times it would dip below the threshold and he'd be back to the start, so to speak.

I would say that now he does get hungry quickly. I exclusively breastfed for about 6 weeks but then switched to combination feeding as he seemed to still be hungry and I thought he wasn't getting enough from my breast milk. Like I say he was 11lbs when born so a big baby to feed! He is not in regular feeding schedule. He feeds well during the night but during the day it's not uncommon for me to offer him a feed and for him to refuse or take a small amount but then scream a short time later and take a full 7oz!

You have me wondering if I should be asking to get his blood sugars checked out again. Any info on the issues your ds had would be useful to know. Hope he is better now.xx

Donhill Wed 05-Oct-16 22:28:20

hi Joolie, my son is better now, but when he was young he had loads of blood sugar issues that went on for his first couple of years. He was a big baby too and his blood sugar was low immediately after birth but stayed bad for ages. Through my son's illness, I met another parent whose daughter had low blood sugar at birth and then was discharged from hospital as they thought her blood sugar was good enough, but then they found out over a year later that actually her daughter was having low blood sugar often. My son was very obviously ill, but her daughter had more mild blood sugar problems and therefore the hospital hadn't realized there was an ongoing problem. But I don't want to cause you any worry - (my son and her daughter are fine now) - and the illness my son had is really, really rare. But I just thought it might be worth you checking your son's blood sugar is at ok levels in case that is what is causing him distress.
I hope things get better for you and your ds. It is so difficult to know what is upsetting them!

sycamore54321 Wed 05-Oct-16 22:59:39

Honestly, I believe vaginal birth, however natural, is much more traumatic for a baby than a section - being squeezed so hard through a bony passage where you don't quite fit, a pelvis which is much better evolved for walking upright than birthing offspring, with oxygen cut off at regular intervals at the peak of contractions, rather than being lifted out of a non-bony soft tissue exit made especially for you. Injections, blood draws etc would be a breeze by comparison.

I also agree with those who sense your projection of guilt on him. Babies don't have memories of the type you think, otherwise every NICU or other sick child would have the sam screams and distress. I know it must be awful to see him so upset but honestly, THIS IS NOT YOUR FAULT. Even if were (which is is not), what were your alternatives? Refuse medically indicated section and risk brain damage or shoulder dystocia etc? Refuse NICU care and leave his blood sugars dangerously unregulated? You clearly did the absolute very best for your child at every stage and are still doing so now.

I would continue to ask doctor to explore a physical cause and use all the tools you have - music etc - to comfort him. Best wishes

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