In a manner quite befitting, reflux has regurgitated and spat itself back into our lives, seeping it’s poison into the darkness of the early morning and creeping stealthily into our bones. It has once again taken hold of our baby, stripped our family down to just barely functioning and is threatening to cave us in again. We’ve been here before. We’ve felt the misery of holding an inconsolable baby rigid in our arms. We’ve watched the pain contort on tiny faces as sleep slips ever further from grasp. We’ve begun, once more, the never ending dance on the hospital waiting lists. We’ve been here before.
Before Elsie was born, nobody really knew what to expect. We were told to anticipate a 4lb baby and instead we were blessed with a 5lb bruiser. We were told we’d need NICU and instead we narrowly escaped. We were told that our precious IUGR baby was a fighter. She would be fine. She was ready to go home, and we were ready to be her parents. It didn’t matter that she had yet to feed satisfactorily from the breast during her hospital stay; I was assured that with three other babies at home I was likely to know what I was doing. And in the euphoria that followed her birth and the revelation that she was well, I agreed. I could conquer the world.
Until that world began to peel. Until Elsie’s weight dropped to just 4b something. Until she refused to then just couldn’t feed. Something just wasn’t clicking, not like it had with the others. Elsie was different.
Grunting. All day, more so at night.
Sneezing. All day. After any stimulus at all.
Wet, painful sounding hiccups after every feed.
A constant sniffly nose.
All things we assumed were down to her being a little bit small, a little bit early and a little bit immature.
Well that is wrong. Elsie is all of those things, but she is more. Elsie is IUGR and she is not like the average 37 weeker. Her body did not grow at the same rate as other babies, inside and out.
Elsie’s tongue tie was confirmed at 6 weeks old. Her revision is being performed next week. Lots of babies with an upper lip tie have a tongue tie too, and Elsie’s is a posterior tie which cannot be treated by many hospitals in our area. Many tongue tied babies suffer from reflux because of poor attachment which leads to them taking in too much air at feeds. This causes painful wind. Elsie has always struggled to feed but her tongue tie was missed. She clicks when she feeds, and this is her losing suction on the breast. She struggles to latch on and then she slips off over and over and over. She and I find this so frustrating.
And yet, despite the tongue tie and feeding problems, her weight gain has been steady! Our little IUGR baby was proving that she just needed a little more time.
And then we noticed that the grunting we were told would disappear hadn’t really gone anywhere. The sneezes, the jerkiness and the hiccups, that were put down to her being so young and having an immature nervous system, were not improving. The constant sniffles and congestion were still there. The weight gain began to slow and she is now falling below the 2nd centile on the growth charts. But it was the face that told me the true story.
Reflux.
That grimace, just as she is trying to fall asleep. Just as she is giving in to the soft arms of slumber, reflux pulls her back again with a sharp tug of pain. Just as her little body dares to relax, it stiffens again. At her 8 week check it was noted that she’s very tense. She was prescribed Ranitidine to neutralise the acid, and we were told that she also has eczema.
Which slots another piece of the puzzle into place.
Often reflux can also be caused by a cow’s milk protein allergy. Congestion and eczema are also signs of this.
So she is being attacked from all angles. Reflux thanks to tongue tie. Reflux thanks to a cow’s milk allergy. Reflux thanks to an immature digestive systems due to growth restriction or just pure bad luck. Lots of IUGR babies have reflux simply because many are born too early and too small, or just too small, and growth restriction means that their systems need some extra time to catch up. Lots of non IUGR babies- like The Schoolboy- also suffer reflux. It’s a cruel guessing game at best.
So this is where we stand. The nights are filled with constant, frustrated feeding sessions that end with us both exhausted and tearful. I am following a dairy free diet in an effort to help alleviate some of her symptoms but it isn’t really having much effect yet. At her one week meds review I told the doctor how worried I was about her choking episodes and have been told to wait for her hospital appointment next month. At this point she had only choked during feeds so it was safe to assume she was taking in milk too quickly… yesterday she choked two hours after a feed, seemingly on nothing. She was unable to breath for a good few seconds, long enough to turn dark red in the face and to scare us all silly. Long enough to set the alarm bells ringing.
This is not right.
It is not good enough to wait another month for answers, for action.
It is not ok to have my baby suffer in pain, struggle to breathe night after night.
It is not right that we are getting no more than two hours sleep a night.
I will not let reflux take over our lives as it did before; I will not sit back and wait for appointments.
I want my baby to be able to eat, sleep and breathe as normal. I want her to be normal.
I wish I had words of advice, but I don’t. Its not fair that you’re all facing this after such a challenging pregnancy. You really do deserve a break. The choking sounds terrifying! I hope you get the help you need. You really shouldn’t have to wait so long for help for your precious little girl. Sending big love and hugs as always xx
Yes the choking is awful. We have a hospital appointment this week so hoping we get some answers soon x x
My boy was diagnosed with a tongue tie in the hospital when he was born, too.
Luckily though he didn’t have to get it cut. He went to his check up 2 months ago and the speed and language therapist and the tongue tie is not affecting his speech. It is a mild one.
He always took bottles ok too. Your baby girl might improve too. Tongue tie can vanish itself most of the time.
I so wish Elsie had been checked in the hospital! We were discharged before feeding was established and she lost so much weight! x x
Oh I have been here, this is so painful to read. I didn’t know L had tongue tie so when my milk dried up we moved straight onto nutramigen formula. I have no words of advice re dairy free breastfeeding, I have no idea how long it takes to clear from your system. Are you cutting out sugars too incase she is also lactose fructose intolerant? Just clutching at straws for you hun. I hope the revision helps her. xxx
Eeeek I never thought of lactose frustose intolerant! I will speak to hospital and hopefully get to the breastfeeding group to for advice. Thank you x x x
No advice, just sympathy. You’ve had a really horrible time of it, haven’t you. Poor little girl and poor brave mama. Good on you for fighting so hard but I wish that you didn’t have to. They should make it easier. They should fall over themselves to help tiny babies and their exhausted parents. The whole system isn’t fair.
Its a shame that we do have to fight but I guess thats just the way it is 🙁 x x
I’m so sorry to read what a tough time Elsie and you are having. Really hope things will improve for both of you!
Ah thank you x x
Hi I’m so sorry you’re all suffering because of reflux, it really is no fun at all. I think doctors brush it off as it’s so common but it’s a nightmare. We used a cranial Osteopath who massively helped baby j’s reflux. I blogged about it as it was like she untwisted something in his back and neck that eased the pressure on his tummy. If you can afford it, it might be worth a try alongside medical care. I do hope she improves soon. X
I’m going to get her in at the cranial osteopath we took Luka too I think. Thank you x x x
I have learnt parents know best and sometimes you really need to push for things to happen x
So true. I’m lucky to have a GP on my side too x x x
Oh I so, so feel for you. Other than the IUGR part (my baby was a rather whooping 11lbs, good thing though as she stopped gaining), I could have written this myself 6 months or so ago. It’s hideous, unbearable and heartbreaking. Also a month for a hospital appointment totally sucks. But I will get better, my Aria is such a happy little thing now. Wishing the best for you xx
It really is hideous isn’t it? And no matter what the birth weight, when they start to lose you feel so helpless don’t you? x x
Oh bless her, and you all too! I hope you manage to speed up an appointment for her (a lot easier said than done I know) so horrible seeing your children in pain, but seeing them choke is just too distressing. xx
Yes we managed to get an appointment at the rapid assessment clinic so fingers crossed we get some answers x x
Great big hugs lady.
It’s an awful time to go through – I’ve been through it many times in my work but twice as a mum myself. Utterly awful.
Cake helps honestly! Be kind to yourself – you’re doing an amazing job.
Rem miner you’re not alone – its pretty common and although perhaps that doesn’t help, perhaps it’ll reassure that at 2am when you’re wide awake pacing the floor – there’s others doing the same.
Here if you need a chat anytime xx
I only wish I could eat cake- dairy free diet sucks!! Thanks lovely, I know it will pass. Hoping to get some answers at the hospital this week x x
Poor Elsie and poor you- you’ve not had the easiest start!!I really hope it all gets sorted soon and you manage to get some rest!
Ah I hope so too. Hospital this week so fingers crossed x x
Oh my, I feel for you. It sounds so frustrating and painful and I am not sure how you are coping at all. You have a brave face.
I hope she gets better through all of this and sooner rather than later so that she can relax and sleep, also so can you.
You poor things. xxxx
Ah thank you. I hope so too! x x
Oh how I wish I had something to say that would make your situation better. The best I can offer is virtual hugs and perhaps the advice to contact PALs and see if they can pull your appointment forward? My daughter had (probably still has) a milk protein allergy but the doctors kept brushing me off with excuses, the dietician was no better. Interestingly she has eczema too.
Thank you. My lovely GP has got us into the rapid assessment clinic so hopefully we can get some answers x x x
heartbreaking.
I hope you get this sorted soon.
Poor baby
Thank you x x
Oh lovely I am so sorry you guys are going through this. Newborn life is tough at the best of times but when your stricken with worry and sadness for your poor, in pain baby, it takes what should be a joyful time and turns it on it’s head. I struggled with feeding Boo and had a hellish first week that made me incredibly anxious and haunted me during her first year, and still does now when I look back on it. And that was nothing compared to what you’re going through with beautiful Elsie. I totally agree it’s not good enough to have to wait when your poor little baby is experiencing constant discomfort. Stamp your feet and make yourself heard- to hell with being polite; you know what your girl is going through, they only see her for brief meetings so can’t know all that she suffering with. Thinking of you all xxx
Thank you. I’m lucky to have a GP on my side who realises that we know something isn’t right with Elsie. Hopefully this week’s hospital appointment will give us some answers x x
You poor poor things. I hope you get some help soon. Keep fighting lovely x
Thanks lovely x x
Now I see why you’re on a dairy free diet.
Really sorry, I know how worrying it is to have a sick baby. I hope someone can give you some answers and a solution very very soon.
X
Haha yep dairy free diet is not through choice!! Thank you x x
Aw bless her (and you) There is nothing like that feeling of desperation with no sleep. She is so beautiful – lots of prayers that everything is sorted out very soon x
Thank you x x x
I’m so sorry this is happening. It is miserable. I know that grunting, almost squealing in sleep that comes with reflux. My daughter suffered badly with it, and we too had a choking episode such as you describe. I couldn’t sleep for fear it might happen in her sleep.
You’re right to insist on being seen by a specialist consultant. It was only when that happened that things got better, and eventually she grew out of it. It will be fine, but I feel for you, it’s very distressing. x
Thank you for your lovely comment. It really is horrid isn’t it? I remember it all so well from Luka but it doesn’t make it any easier at all 🙁 x x x
You’re doing a brilliant job – and you’re not alone. You’re right to push for answers and treatment though, your instinct is the strongest thing you have when it comes to fighting your little one’s corner. Baby girl was diagnosed with silent reflux last week but now I’m not convinced she has it. So many of the signs were there but then we had 5 normal days with her last week where she was like the baby I’ve known for the first 11 weeks of her life. Today she was unsettled again but seemingly (fingers crossed) fine after a huge burp and filling her nappy. Who knows though, it’s all such a guessing game with babies! Well done for writing such a well written post when you’re existing on just 2 hours sleep a night. xxx
Oh Molly I’m so sorry baby girl has been struggling! Its so not fun at all. I hope it’s just a blip for you, I really do. I’m going to take Elsie to a cranio osteopath- might be worth a visit? x x x
Oh bless you hunny you have had such a struggle. I can’t even begin to imagine all that going on and not having answers or the waiting for them. Bless you. I am sending virtual hugs I hope you get answers soon babes. And things get smoother for you all. Thanks for linking up to Share With Me. Sorry if you had any trouble commenting on my site today as the host is being transferred there are a few glitches to fix. Apologies. #sharewithme
Thank you lovely! x x x
How awful for you all – huge hugs xx I hope that they get an appointment for you quickly and that something can be done to ease her symptoms, my heart aches for her reading this x
Thank you, we are being seen next week x x
This just broke my heart. We went through reflux too and never got any help because M always gained weight satisfactorily. If I knew then what I know now, I’d have stamped my foot and screamed until someone listened. I hope you can do the same and they do listen to you, but I know it’s exhausting – I sometimes wonder whether the resignation to it not really being reflux when my instinct told me otherwise was due to me being too tired to carry on fighting. Big hugs x
It’s so hard when all they seem to care about is whether or not baby is gaining weight! Its awful to see them in pain 🙁 x x
I can imagine how much it hurts to see your little angel in pain. You’re right in not wanting to wait, and why should you? I hope she gets the right treatment and is better soon xx
Its so odd reading this and seeing so many things that describe Taylor, although I have no experience of reflux. He grunts at night, sneezes a lot, always has hiccups which make me feel useless and he’s very congested at night. He also pulls off the breast coughing/choking often too. I should mention it to the HV at our next appointment. I hope yourself and Elsie are getting any help you need xxx
Lisa, do mention it- although these are all things that new babies do anyway. This is why we went so long without realising Elsie was suffering. Keep an eye on him and if you’re concerned definitely mention it x x x x
I’m currently on the same boat. Iugr born at 3 lbs 14 oz, lip tie, milk protein allergy. Zantac not working. Currently experimenting with expensive nutramigen. I definitely feel her pain. Her voice got hoarse from the reflux. Reading your posts definitely reminds me that I’m not alone
Oh I’m so sorry to hear this. Its hard, but it does get better I promise! xx
currently in the same boat with my iugr daughter. hardly gettin 2…3.hrs sleep….its reallyy frustraring amd depressing.. i can feel and understand each and every word you wrote and how much pain is behind those.