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Children's health

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Original poster

4 week old daughter and pyloric stenosis: handhold please!

52 replies

plimsolls · 19/09/2016 03:37

Excuse any overly sleep deprived emotional ramble.

My 4 week old daughter was admitted to hospital on Friday after I took her to OOH due to frequent and increasing projectile vomiting and distress. I (and docs) assumed bad acid reflux but they kept her in for obs. The projectile vomiting continued although she seemed a little happier on the meds for acid.

They did an ultrasound just in case and detected a thickened lower stomach valve which indicates pyloric stenosis. Initially they said this would mean an op. But now they're saying it's only just within thickened limits and it's unusual to be present in girls so want to do further investigation tomorrow.

In the meantime, my tiny baby is on nil by mouth and has spent hours and hours screaming. She has spent her whole life comforted by my breast and now she can't have it.

I'm terrified of her having an operation, I'm dreading them saying not to operate yet (as what do I do about the vomit & distress?) and I can't bear the hours of her screaming on nil by mouth whilst everyone decides what to do.

I just can't stop crying.

OP posts:

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NewIdeasToday · 19/09/2016 03:41

Oh dear. Sorry to hear you're having such a tough time. Can the hospital suggest anything to help sooth your baby?

I hope they can quickly work out how to help her. It's times like this that make you really appreciate the NHS, even though it's horrible at the time.

Eminado · 19/09/2016 03:43

I am so sorry.
I really hope you get a quick diagnosis / decision soon.

Would you be allowed to play music or something like Ewan the dream sheep to try to soothe her? Sorry of that's impractical.

LuchiMangsho · 19/09/2016 03:47

I commented I your other thread. Sorry to hear there has been no resolution. It IS almost unheard of for baby girls to have pyloric stenosis so the doctors aren't wrong. But it is distressing to see your baby like that. Fingers crossed this is over soon and they decide one way or another.

BillSykesDog · 19/09/2016 03:50

I don't really have any useful advice but just wanted to send you a lot of and sympathy. Must be incredibly hard.

theconstantinoplegardener · 19/09/2016 03:56

That sounds dreadful, what a worrying time. I do hope they can come to a decision in the morning and hopefully by this time tomorrow you and your baby will have been able to put this horrible time behind you and things will be looking brighter.

In the mean time, having a very distressed baby that you can't comfort is terribly upsetting for both of you. I expect your baby is on a drip to provide fluids so she needs comfort more than milk. Will she suckle on your finger? Is there anybody else who could hold her for a bit (as she might associate you with milk/smell milk, and be frustrated that she can't have any)? I expect the last thing you want to do is hand your sobbing baby to anyone else - but it might possibly help, and you could have a break from the screaming. I do hope this can be resolved soon.

Tootsiepops · 19/09/2016 03:56

Hi op. Im so sorry you are having a tough time. My baby spent the first week of her little life in special care and it was horrible. Even though she was in the best place, and all the doctors and nurses wanted good things for her. Hold on to the thought that you will have a decision about the way forward soon. When my daughter was at her worst, there was a lovely midwife who offered to sit with her whilst I took a break. Is there someone who could do that for you?

Original poster

plimsolls · 19/09/2016 08:03

Thank you all.

One of the fantastic nurses took her for a few hours overnight so I could sleep. She's currently snoozing now. She was awake a little while ago but didn't seem interested or bothered by me at all. I guess I should be pleased as it meant she wasn't screaming for milk but I feel like she's forgotten me or that I have nothing to offer her.

OP posts:

BillSykesDog · 19/09/2016 08:09

She's probably just knackered and spaced out from not eating and crying. She hasn't forgotten you, she's just feeling rotten.

MothersGrim · 19/09/2016 08:38

Do not underestimate the trauma this will have on you. I want you to take really good care of yourself during this time.

When people you know ask you how you are doing, do not say 'Fine'. Ask for help. Ask for a hug. AsK if someone can stop by the hospital for a quick coffee. Ask someone to bring you a piece of fruit or a cooked teacake.

Don't try and.bundle yourself through. You need support so that you have more to give your baby

monsterbookofty · 19/09/2016 08:43

My ds had pyloric stenosis and had the op at 3 weeks. I hope they make a decision quickly. Its a horrible situation and hearing your baby scream because they are hungry and not be able to help is the worst feeling!

Tootsiepops · 19/09/2016 12:28

How are things now op? Are you any further forward with a treatment decision?

Original poster

plimsolls · 19/09/2016 13:10

Had a meeting with brilliant surgical lead who confirmed she does have pyloric stenosis. She's booked in for surgery later today (unless greater priority/emergency arises). I feel a little calmer now we have a plan, and she's settled a little, not so distressed and desperate to feed.

Thank you all for the messages. They really helped take the edge of the despair and fear

OP posts:

Kbear · 19/09/2016 13:13

wishing your DD all the best for her op and take care of yourself OP, what a stressful time.

NewIdeasToday · 19/09/2016 13:17

Hope everything goes as smoothly as possible and that your baby recovers quickly. Do you have anyone who can sit with you or maybe take you for coffee while your baby is in surgery?

Footle · 19/09/2016 13:18

A dummy might help a bit ? Hope she's in theatre now anyway.

SometimesItRains · 19/09/2016 13:35

Hi there OP, I hope you manage to get surgery this afternoon. DS1 had PS at 3 weeks so I know what you're going through. It is hard to hand them over to the Drs for the op, but it is a routine short op and so your DD will be back with you before you know it.

Just a warning that she may still be sick after the op - apparently it is all their bodies are used to and so can take a feed or two before their stomach realises it doesn't need to any more. DS was sick twice after the op I think and I panicked that it hadn't worked, but he was fine.

Have you managed to express while she has been nil by mouth? The hospital we really good at supporting me to do this and DS was able to carry on feeding when he was better (until I'd had enough at 8 months!)

You will get through this and be home before the end of the week - just focus on that. DS is now a strapping 4 year old with no sign of the horrible first 4 weeks he had apart from a little scar that he is fascinated with.

and hugs for the next day or so.

vinoandbrie · 19/09/2016 13:43

I hope she gets into surgery this afternoon, you are being incredibly strong

moobeana · 19/09/2016 13:44

Oh I'm so pleased you have a plea. A lot of the time the worst of it is not knowing and not being able to mentally plan.

I am so sorry this is happening, but she will not remember this, she will be well after it. You have done a fantastic job as a mummy, you have comforted her and when it became evident she wasn't ok, you got her the right help. Well done, I say this because you will probably be beating yourself up, you have done a wonderful job.

Next you need to think of the next few days and weeks.
Think about yourself too, if you have an iPad, get someone to load films, to and books on it and bring it in. I spent a week watching Gilmore Girls on mine while my newborn was in SCBU.
Get some microwave meals (I'm assuming there is a parent kitchen area) you need to eat!
Get pumping! Keep your milk going, hospital should have excellent pumps you can borrow, they are well equipped for this. I borrowed one and took it home while my baby was still in so I could pump at night.

Big hugs and I hope today isn't too bad

WankingMonkey · 19/09/2016 13:49

Sorry to hear you are going through this..this doesn't seem to have been mentioned yet and I am sure it is the last thing on your mind right now with everything but some practical advice, make sure you keep expressing even when baby is not being fed. My milk dried up extremely fast when my son went through a period of illness and was never the same again.

theconstantinoplegardener · 19/09/2016 14:02

Good to hear that your little one will be operated on today! I hope everything goes smoothly and you both start to feel better very soon.

LotsOfDots · 19/09/2016 18:14

Hey plimsolls, how is she doing? Has she had her op yet? Hope all has gone well.

moobeana · 19/09/2016 18:57

How are you? How are things?

Thoughts and prayers are with you

legoqueen · 19/09/2016 19:24

Hope that you & DD are doing okay

CormoranStrike · 19/09/2016 19:31

My niece had this op (girls can get it) and she recovered very well. Hope all goes well.

Owlytellsmesecrets · 19/09/2016 19:37

I totally feel for you!!! We spend the first 18months of DS2's life in and out of hospital .... In for 2 out for 1 back in for 2 ...... It was hell but you do survive! They thought DS had Pyloric Stenosis but he actually had severe reflux. 7 years later we discovered he had a very rare (30 kids worldwide) gene mutation and all the kids had severe reflux!
You need ready meals, Pepsi Max and Netflix!!!!
Feel better soon DD xxxxx

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