Support for Parents of "High Need" Babies

[MollyApple]

MollyApple - huge to you!!! I don't even know what to say! That sounds similar to my LO, but I had a lot more support (my mom and sister both had HN babies). Do you find that she likes something one moment, hates it the next, then loves it again a few weeks later? My most recent thing is bottles - my LO is super sensitive to bottles - she likes all of her bottles, then will stop liking one kind and will only like another kind - until she hates that kind then likes another kind. As a result, w have 27 bottles and 10 different kinds - we never know which one she'll take. SIGH.

It does get better though - she is now able to self soothe a bit (she's 4 months now) by sucking her thumb, and she's starting to be intrigued by toys that occupy her for a little longer - she'll play on her own now for about 5 minutes!

I am super lucky that she's a decent night sleeper - I too lost a lot of weight right away from the sheer amount of activity needed to look after an HN baby! We eat dinner after she goes to bed - otherwise we just can't enjoy it!

Any tips for taking HN babies on airplanes - 2 weeks until we travel home for the holidays... YIPES!


A

Thank you Adzuki, I really appreciate your reply

I had something similar but not as bad with the bottles. At first JP was okay with Tommy Tippee and not Avent, now she has completely switched preference and will not drink from a TT. I b'feed but on rare occassion use a carton of formula. First couple of times I did this she was very happy with it (even slept for 5 hours after the second time!). Ever since then I can't get her to drink formula. I can't believe you have to keep so many bottles for her!

Soothers is another fussy point, she has one favourite (its a medicine dummy so usually I put some gripe water or colic drops in it for her) any other dummy is flat out refused.

Tummy time is a no-no - she doesn't like it if I put her on her tummy BUT she quite often climbs off my lap onto her tummy quite happily, then after a bit starts getting distressed and complaining she doesn't want to be on her belly any more!!

This week she has finally started to pay attention to her toys and I am starting to have some success with her bouncer, which has been another love-hate thing from week to week. Tonight while I cooked dinner and cleaned the kitchen she was in her bouncer, crying for a few minutes then watching me for a few minutes then crying for a few minutes then playing with toys... it went on and on like this, I just kept doing what I was doing but talking to her all the time and trying to keep facing her as much as possible. I think what I'm trying to acheive is reassure her that I am around and relaxed so she is safe.

I am trying always now to think why she is behaving in a certain way and once I understand that I find I feel more tolerant (to begin with anyway!). It is hard though forcing a smile whilst thinking will you pleeeease shut up!!! Determination to cope always help and knowing its not for ever! Plus I am finally over the chest infection and illness that's been making things harder for the last month.

I am also finding waiting the extra time until she is in a deeper sleep has been successful in helping me to put her down. Probably works about a third of the time now and then I just have to hope something doesn't wake her! Her startle reflex finally seems to be improving, that will make a difference when its gone and I've also moved rooms with her so I'm now at the back of the house in a quieter, warmer room at night. She still wakes several times in the night but initially she is sleeping for longer and I'm definitely sleeping better for the move. I have noticed that even if I feed her 10 minutes before bedtime, when we go to bed (she won't sleep on her own), she still insists on another feed. I've decided this is her thinking "oh we're going to bed now? I'd better top up for a few hours!".

Julie - I'm trying out a variation on the pat/hush at moment as I can rarely get to JP's back so I am gently rubbing her tummy in a circular motion. She doesn't seem to like the shushing but the rubbing helps sometime (especially as I think she has bad wind probs). If it doesn't look like its working I go back to cuddling until she is calm again. She's still too young for PU/PD too so will persevere with the gentler stuff until then!

 

[MollyApple]

Oh and as for flight tips I have no idea but I think you are very brave! Expect the worst and hope to be pleasantly surprised?! I wish I could help, but good luck! How far do you have to travel?

 

[adzuki]

Oh my gosh, MA - certain parts of what you write make me wince with familiarity!!!!!!!! The soother..... (she frantically wants to suck but the only thing she'll take with any consistency is my pinky finger!), the whole routine of prepping dinner (we use the bumbo on the counter, and I explain everything to her!).

Yah, I am taking the same approach with flying - crossing fingers and bringing the sling (we have one sling that helps her with her stimulation issues and she can sleep in it)

SHH pat didnt' work for us either. shhh rub did though (the patting upset her reflux and hurt her). We ended up getting a sleep sheep (white noise machine). The thing that helped the most with turning off Miss M's startle reflux was soothing her on her side. I didn't know that when babies are on their backs, their startle reflex goes off - so now we try to soothe her on her side at all times!

Good luck! Know that there's someone all the way over here in Canada rooting for you, MA!


A

 

[Cinderella]

I need a rant.... I'm so frustrated and tired and emotionally drained and no one seems to understand! I'm an absolute nervous wreck most of the time because I just can't switch off from Max and his screaming fits.

He has terrible reflux and probably because of this he has terrible screaming fits and terrible sleeping habits. Altogether in a day he's probably awake for fourteen hours (not consecutively, he naps for 15-30mins every 2 hours), and in that time he's probably screaming for at least 12hrs of it. We'll get a good ten minutes where he's the most beautiful, amazingly clever baby and then it's like something switches and he just starts screaming... he'll scream until he's blue in the face and sweaty and spluttering, for at least an hour, all the while i'm trying everything to stop him, patting, hushing, walking, bouncing, milk, dummies, blankies... you name it! And it just doesn't work. I think it's mainly sensory, almost like the 5 minutes of stimulation was too much as usually the only thing that can get him out of a screaming fit is to turn all the lights out and cover his eyes with a blanket. But even that is very hit and miss. I constantly have to entertain him when he's awake, but if it's not constant then he whines and whinges which within minutes escalates to a full blown screaming fit. He literally just wants to spend the whole entire day in my arms, facing outwards, being walked around. If you stop, he screams, if you sit, he screams, if you go to take a sip of your drink, he screams... see the theme? I take several walks a day as this seems to entertain him, but again, he has to be facing outwards and you can't put the rain cover over his pushchair as he screams. So if it's raining, no walks.

Feeding is a nightmare, he screams for food, screams during feeding, after spending an hour trying to get 3oz into him he then screams for an hour afterwards and throws up. He now can't tolerate nappy changing or baths... he used to be ok but now he screams through them both.

My ears are just wringing from the constant screaming. He goes to bed about 10pm, and sleeps through til about 7am, but does fuss for feeds every 3hrs. It's not a settled sleep, he wriggles, coughs, cries, thrashes about, whimpers, gags... constantly, so I don't feel able to sleep when he does because I worry he won't recover from a gagging fit. I only sleep when my mum comes to watch him for a few hours in the morning, but even that's hard because I hear him crying the whole entire time.

I've mentioned his behaviour to the Doctors so many times and they just say that it's normal and that some babies need more from their parents than others but his behaviour just seems ridiculous. The GP said it's normal for reflux babies, this is not normal!

The worst thing is, I do find myself resenting him sometimes, and then find myself hating myself for not liking him. It's not his fault, I know that, but sometimes, I really would just love a few hours where I'm awake and there's no screaming.

My situation isn't normal, which I know doesn't help matters. Max being my nephew and my sister not living with us. I don't want to get too much into her situation but it is mainly depression that's keeping him with me. I feel resentful to her sometimes that my whole life has changed because she got sick... I don't live with my OH as he's still in London and i'm up in Manchester living off my savings barely above the poverty line so that I can look after her baby. When OH does come to visit, even though we're supposed to be TTC, I can't bare to sleep with him because i'm now so scared that my child would end up being just as hard work as Max and I don't think I could cope with this again. I do work closely with the social worker, she's wonderful and really helping so I do feel supported... I'm just so completely lost as to what to do next with him. How I can make his life better, he obviously can't be too happy as he spends all day screaming.

No one has to respond and I don't really have any questions... I just need to rant and get it all out! Whenever I speak to the social worker I just end up a huge crying mess and then worried they'd take Max from me and put him into foster care, even though I know it won't happen..I just keep telling myself he'll grow out of it, but then I feel guilty that i'm wishing away his life.... this is horrible! Please tell me it gets better.... even if it's a year away... it least it gives me something to work towards! x

 

[MollyApple]

Hi Cinderella,

I have no advice to offer but want to say my heart really goes out to you & that you are amazing for coping so far. JP needs constant attention but I am so grateful that when she has it she's happy.

I agree Max's behaviour sounds abnormal, I wonder if there are any support groups that can help. Have you spoken with a paediatrician or child psychologist instead of GPs? At his age he should be able to bond to you, but I know from JP that babies pick up on the slightest emotion/insecurity. Overtiredness also makes JP scream, so Max has it all poor little soul. One of my friends did have a baby that screamed constantly and it eventually stopped several months down the line.

Good luck, I really hope you find a solution and a rant helps you cope xx

 

[MollyApple]

Hi Cinderella,

I have no advice to offer but want to say my heart really goes out to you & that you are amazing for coping so far. JP needs constant attention but I am so grateful that when she has it she's happy.

I agree Max's behaviour sounds abnormal, I wonder if there are any support groups that can help. Have you spoken with a paediatrician or child psychologist instead of GPs? At his age he should be able to bond to you, but I know from JP that babies pick up on the slightest emotion/insecurity. Overtiredness also makes JP scream, so Max has it all poor little soul. One of my friends did have a baby that screamed constantly and it eventually stopped several months down the line.

Good luck, I really hope you find a solution and a rant helps you cope xx

 

[spidey]

Hi all- its my first time reading this group!

Hi Cinderella- Keep hanging in there... to me it seems that once babies can interact and control their environment more, they start to settle down some. One thing that worked really well for me when Kira was 3 months old was using a carrier. I had a Moby wrap and she spent most of the day in it. It helped her nap easier and longer and I had both hands free to play on the computer, cook dinner, shop, etc. Plus it keeps them more upright so the reflux won't be able to come up as easy. I would stick her in the Moby and turn on good dance music quite loud, and dance around the house for a few minutes. Once she fell asleep she would stay asleep for 1 hour or longer and if she started stirring, I would dance around a little to get her back to sleep. For Kira, being just slightly tired turns her into a whiney mess! She actually needed about 18 to 19 hours of sleep each day at 3 months to be generally happy during awake times.

 

[Hiding]

Hello there

Much as I'd not like to be a 'member' of this group...I'd like to be a member pleeeease!!!

I recently posted the problems I am having with my son and was pointed in the direction of this thread. The posts seem to be a few months old, and I'd be really interested in finding out how you are all doing now? My LO is very nearly 4 months now and I am hoping all this crying and screaming is something he will grow out of??? He is what I would call a high maintenance baby, high need, cranky and whiney!!! He is overly active and moves in some way or form every waking moment. Even to the point of falling asleep - there is NO wind down time for him, he just doesnt seem to know how to relax. Sounds fun eh??? He is also incredibly alert, very bright, loooves to 'stand' with you just holding his fingers, not even his arms or back. He is so strong.

I fall more and more in love with him daily as I feel we are bonding more now, but he really tests the little patience I have!! Especially with naps. If I crack this, I feel I can deal with the constant (and I MEAN constant) need for attention and need to be entertained at all times. Well actually, we have issues with SCREAMING through EVERY car journey - starting when he is put into his car seat. Its very distressing and makes my blood BOIL in every car trip. I just find it so hard to deal with.

Cranial osteopathy was amazing and literally changed him overnight - for about a week - but I feel he went 'downhill' again and is hard work all over again.

Moan over - I love my boy, heaps and heaps. But boy is he hard work at times. Like now....he has been in bed for 3.5 hours and I can hear him stirring - its the 5th night in a row that he has woken for a pre midnight feed - he used to sleep from 7 til at least 2 right up to 4am. Its tiring!!!

Better go, getting louder. Would love to hear from some of you

 

[MollyApple]

He is overly active and moves in some way or form every waking moment. Even to the point of falling asleep - there is NO wind down time for him, he just doesnt seem to know how to relax.

He is also incredibly alert, very bright, loooves to 'stand' with you just holding his fingers, not even his arms or back. He is so strong.

If I crack this, I feel I can deal with the constant (and I MEAN constant) need for attention and need to be entertained at all times.

But boy is he hard work at times. Like now....he has been in bed for 3.5 hours and I can hear him stirring - its the 5th night in a row that he has woken for a pre midnight feed - he used to sleep from 7 til at least 2 right up to 4am. Its tiring!!!

I've picked out the bits of your post where you described my daughter to a tee!! She's now just over 5 months of age and I have to say I don't think she has changed that much, but I have learned to cope a lot better. That said I hate to admit there are still days when I can't bear the screaming and end up shouting with frustration at her

She is lovable and beautiful with the most gorgeous smile and most of the time she is a very happy girl but this is because she constantly has attention and is being held. Try to put her down, leave the room etc and the sobbing starts. We had a much better time during month 4 but now she is showing seperation anxiety and we are back to square one - if mummy leaves the room, its the worst thing ever!

I hoped things would get better when she started to get interested in toys, but that lasts about 15 minutes! BUT she does play herself on occassion and a few times I've got her to go to sleep without walking/rocking/feeding and I'm hopeful we can build on this.

She slept through the night from birth until about 8 weeks now she wakes frequently but we co-sleep so I barely get disturbed. Her Moro reflex was really bad, constantly waking her, that has definitely improved but once she is thrashing its hard to keep her asleep - I've learned that hilding down her limbs helps if she hasn't properly woken up, she often drifts back to sleep but it can take a few mins of whining. The evenings are worse because she gets tired but doesn't want to miss anything and fights sleep, little monkey! But again on a positive, around 9pm she is ready to go to sleep if someone other than mommy soothes her.

I just keep reminding myself how gorgeous this baby is and how I will miss having a baby when she is a toddler and beyond. I also attribute some of it to the fact she evidently a bright spark (Dr Sears also says HN babes tend to be very smart), very alert from the minute she was born and she is physically strong - by one month she could hold her own head, climb up my chest and support her weight on her legs, by 10 weeks she could stand and support herself against a chair and by 4 months she could walk around with hand support and was sliding off my lap to go towards things she wanted. Everyone we know is surprised by her strength (being as she is very skinny too) and predict she will be walking soon, she's already pulling up and sitting. Rather than feeling desperate, I regard this as who she is and what she wants to do and so I help and encourage her. It is making my life much harder doing so but she seems to respond better to it, she looks so proud every time she stands or sits herself up and I am very proud of her too!

Looking at what I have written, its probably not what you want to hear! But if you can learn to look at the positive side of the things your little man does and tell yourself to keep patience (even if it means grinning through gritted teeth at him) and stay proud of him I'm sure you will learn to deal with the most part of it.

The other thing that has helped is trying to tune in with JP, understanding why she does certain things and figuring out what to do to help. E.G. At first the moment she'd start to cry in bed I'd rush to pick her up, now I've learned that sometimes she will cry for a few mins IN her sleep and then drift back into quiet sleep again. I've also learned not to try putting her down or moving her until she is in loose-limb sleep and I've made a concerted effort to learn her cries and patterns to give me a better chance at working out what's wrong, its not always obvious but even a little understanding helps.

One thing I don't believe in is letting a baby cry it out and this is backed up by plenty of reseach. Sometimes its just not practical to pick JP up and she has to cry for a short while but I try to keep her happy as much as possible as this is a crucial development time for their brains and emotions too. I hope that by cuddling and loving her lots and indulging these difficult habits of hers now, that she will grow out of them in good time and in the future she will be a happy and confident person.

Good reads that really helped me to feel better and inspired me are Drs Sears and the Baby Whisperer (Tracy Hogg). The Baby Whisperer has been on one of the Doscovery channels too recently.

Sorry this post is a bit rambly, I have the most ferocious headache today. Good luck with Finn, keep up the love!

 

[adzuki]

Howdy and welcome!

Maia is getting better and better, though she still is really touchy. As long as she's had some decent naps, she's OK. She needs to get out for a bit each day, even though she gets super picky with eating (will take 1-2 hours to take a bottle) and that makes it hard to get out of the house. She also needs me to be in her sightlines constantly, and I have to talk to her all the time if I leave the room - it is quite exhausting.

But, she's as sharp as a whip and can entertain herself for quite a long time, so as long as she's near me, I get lots done.

Most days she's awesome - these past two days have been trying though - she's punishing me for being away from her lots this weekend. Sigh.


A

 

[MollyApple]

Adzuki, so pleased to hear about Maia's progress, wonderful you are able to get time to do things Hopefully in time the rest will iron out!

We too have made progress in some areas. She's much happier playing on her own with toys and I've managed to leave her with a babysitter for 1, 5 & 6 hours now. But most of the time I have to be within sight. Even when someone else is holding her she keeps looking for me for reassurance. In one way I'm very flattered, on the otherhand, having to get out of a long yearned for bath just 5 minutes after getting in it because she is hysterical does not go down well with me.

I've been working really hard on getting her to drift off to sleep without feeding or holding and I've managed its half a dozen times, maybe more now. A small stepping stone but hugely important to me.

Hope everyone else is making small triumphs!x

 

[celine]

We are making baby steps as well! With much determination I pt G down in his cot for a morning nap once he has been awake for 2-3 hours and sometimes he naps up to 2 hours (ok that happened once) but there is always one or 2 off days in the week but nomrally it goes quiet well

 

[MollyApple]

Yay, great to hear some of us are winning in the challenge with our spirited little ones.

Having met a couple of really docile babies (so uninterested in the world and - dare I say it? - dull), I am actually very grateful to have a little girl with so much personality and attitude who really knows her own mind! (Although I'm sure some days I'll regret saying that )

 

[Per16]

Hi Girls I am sitting here looking at my darling daughter and I feel so much love, joy and happiness it is crazy, I just feel at this very moment, the luckiest girl on the planet all the sleepless nights, feeding issues are ALL worth it when I see my baby girl chuckling at me and looking at me and OH with so much love, I feel so so blessed and will cherish every second I have with Annabelle until she is 101 and looking after us!!! hahaa!

Happy Friday Mommas

 

[Hiding]

Hi girls,

I came on and asked for help, then I vanished! Sorry and thank you for the reply Adzuki and Mollyapple Havent been able to get on here for more than 5 minutes so not been able to respond.

I called the HV's about a feeding problem I had with LO and discussed the whole nightmare napping problems. I was advised to keep trying LO in his cot and 'hold him down'. I suppose in effect he is crying it out, but I am with him at all times and soothing him until he is asleep. I dont like holding him down, but it really does work. He is soooo active that he will kick and thrash until he is awake, so this makes sense for him. The aim is to just be in the room without touching him, then to be able to put him into the cot and leave him to fall asleep. Well, nearly 2 weeks on, I am still holding him down, and progression seems far away!! However, I am sooooo much happier with this than bouncing him on the ball and using the car seat!

He still HATES being restrained - in car seat, in the car, in a sling, even being put into a jacket. He will scream and cry and driving is still very difficult. As a result, I am still not taking him out as much as I'd like to as its just too much hard work!

He is thriving though, and like the more recent posts, I am finding it easier, little bit by little bit, to 'deal' with him, to keep him amused and happy. He is still my high need baby, but I suppose he is just inquisitive, nosey and eager to learn!

Does anyone have any problems with putting their LO in the car, or when driving? I have put toys on his seat and on his lap etc but they rarely help. We've had one or two journeys where he will coo at the toys, and my god, it makes me so happy!!! I'd love some suggestions if anyone has any!

Thanks girls, and great to hear that it gets easier bit by bit xxx

 

[MollyApple]

Hiya Hiding,

Well done on keeping up with the sleeping plan! Don't feel bad about holding him down, JP wakes up thrashing and I now hold down her limbs, she thrashes and cries for a few minutes then goes back to sleep (in fact I soon realised she's not properly awake but in that inbetween state - I wonder if she'll be a sleepwalker like my sisters were...). I think it's trapped wind that's usually the cause in JP's case as the thrashing is usually followed by a good bout of letting rip

Luckily JP likes the carseat - as long as we keep moving! She hates being stopped at traffic lights and cries. My parents live nearly 3 hours away and that journey is too much for her, she usually sobs for the last half hour or more (the bit I need to concentrate most on) so I understand what you mean about driving being difficult and sadly I have no suggestions to share. I try not to stop, but at times I have pulled over, cuddled her then put her back in her seat only for her to start crying before we're barely back on the road! We just have to keep on in there, it'll get better one day, right?!

 

[Fluxuspoem]

Hi everyone

I am a mum of a wonderful and bright HN baby. My daughter Christina was born prematurely in October and her corrected age is 2and a half months now or so. Christina is also a reflux sufferer and has already experienced a lot of pain from it. She is also a chockey baby and had to be hospitalised for a week due to a very bad drawning incident ( she choked on ranitidine - yes that one ml was enough).

Anyway she still chokes ( has done one this morning) but slowly as she started growing up, she also started developing other habits such as always crying before sleeping, always wanting to be carried around, hates her crib, wakes up really easily, cant self soothe, goes very quick from happy state to upset state, needs a lot of sleep to be happy but resisting it like mad, can't play alone for more than a few mins, waking up like 4 times in the night or more sometimes, screams like hell when she gets a bit tired and the list goes on.

She is howevery extremely sociable and bright for her age, and i love her to bits. She seems to be getting worse though, and its really difficult to cope with her crying bouts all the time. I have really bad tentonitis from carrying her around and cannot leave the room without her otherwise she screams

Does anyones LO cry a lot before sleeping? I do hold her 2leep but nothibg really works she just screams and screams. She is too young for CC yet, but I am almost certain that it wont work for her, she is happy to cry for over an hour, nothing stops this little one, and I dont want to subject her to it, as it really wont work and will only frustrate her further.



I was also a hn baby so I suppose this is my punishment and blessing!

 

[mum2b2009]

Hello every one! i am M and also have a HN baby! defo confirmed by reading this whole thread. My boy has always been HN i.e needing to be rocked to sleep and not sitting on his own for any longer than a few seconds.
I hoped that he would get better as he got older but has been getting worse and he is 3 months.
He likes to be walked around else he will cry even beeing cuddeld,he will settle after a while of crying fuzzing but soon gets gumpy again! i would wear him but have a bad back and he is not light lol.
He fights his day time napps unless he is out in the car or pram,he does sleep at night which is a god send!

I find my self losing patients with him and crying on really bad days but i try too remember that it cant be very nice ior him neither. He does have the most wonderful smile and giggle and i love him too bits.

great thread, great to know that i am not the only one

 

[MollyApple]

Hi ladies, quick update from us. JP has just turned 6 months - oh my gosh!

She's currently going through a very particular stage where she doesn't like to sit down anymore and cries so she has to be held standing up. If I am holding her, I'm not allowed to sit down, I have to stand up. Talk about aching arms having to carry and rock her around!

But the good stuff now! We no longer have that terrible little grump in the evening! We've just started weaning, so now its dinner, bath, milk feed and sleep and actually nows she got used to that it really does seem to be helping. Unfortunately doesn't always work, tonight we had to skip the bath as she was throwing a tantrum every time I put her down and it was a choice between her bath or our dinner lol! But she is now either asleep or happy to play in the evenings, she still wakes up frequently (mostly wind still) but most evenings are free of those overtired tears which feels like a great advance!

Keep strong girls, I'm starting to see how quickly time really does fly!

 

[Nic1107]

Oh my god, I read this entire thread and the whole thing could be about my baby! Carmen hasn't been an easy baby since I brought her home from the hospital; even as a brand-newborn she refused to sleep anywhere but in her vibrating chair or in someone's arms. She will sometimes sleep for an hour or so in her snuggle nest (co-sleeper cot which fits in my bed), but she is fussy even in her sleep, constantly moving and startling herself awake.

She has silent reflux, and had bad gas that she would struggle and struggle to pass when she was on expressed breast milk and later on regular formula. Now she's on a low-lactose formula, and although she still has reflux the gas has improved dramatically. She was never able to breastfeed; she couldn't latch at all and she hated every single breastfeeding hold. The only way she'll feed in somewhat upright in my arms, and it was impossible to get her to the breast that way. Even that lactation specialist at the hospital gave up. She has trouble with every kind of bottle nipple except Dr. Brown's, but I have to use the bottles without the insert or she'll dribble formula all over herself. She only occasionally accepts a pacifier, and only one specific kind.

The only sleep I ever get is about 4 hours in the evening when my mom can watch her; then I'm up with her for the rest of the night and the next day. She eats little and often, and has to be feed to sleep most of the time. If she's very tired, I can rock her to sleep swaddled. She hates being naked, she cries for diaper changes, she hates her car seat, hates her swing, only tolerates her play mat for a short time. I know she'll grow out of a lot of things, but she's only 6 weeks old, and "eventually" seems so far away!