To leave ds

[Hockeyboysmum]

Long story short my 8 week old son is in hospital. We have been here for 11 days now and also had a few days stay a few weeks back. I cant cope. Ive now not slept a wink in 72 hours. He screams all night. When we here before the nurses etc said i couldnt go home for a night and leave him. I stayed this time because i thought he needs me -he doesn't he hates me. I cant take anymore. If he doesnt get home tomorrow aibu to go home for the night without him? Hospital locked down ao cant go out for a walk or anything and no one can visit so havent seen older son

[OptimisticSix]

Go home, they will look after him. It's awful you're not getting enough food but Im not surprised, I stayed in hospital two days with my child once and wasnt fed. He was. I was told they don't feed adults and someone would have to bring something in. Unfortunately I had just moved and didnt know anyone.

[Hockeyboysmum]

Because we arent allowed out and no one allowed in we sre meant to get fed but its hit and miss.

He is currently just being bottle fed with no major issues. At the moment he has no ivs etc

He was sleeping as i held him at 5am this morning. Nurse took him and said shed settle him in cot so i could sleep. 3 hrs later she still hadnt managed to get him there. Awful but at least its not just me.

[SimonJT]

Go home, he doesn’t hate you, he isn’t even capable of feeling pain, he’ll be crying because he’s uncomfortable and tired, just as you feel awful because you are uncomfortable and tired.

If I were you I would start visiting in the day time and going home to sleep, that way along with better sleep, being in your own home etc you can take a packed lunch to the hospital.

A good parent isn’t someone who is with their child 24/7, it’s someone who puts their own sanity and health first so they can effectively parent.

Home, bath, bed!

[Mrsjayy]

But if you went home would they allow you back in the ward ? I'm not understanding that bit.

[Hockeyboysmum]

The rules on that are a big vague and keep changing. I should be allowed to go home and back the next day but you cant go in and out of the building on the same day. I have a letter to get access and there are guards at each door

All the parent rooms/patient kitchen/support stuff is all suspended so its very isolating just now. Now allowed out room to even be able to say hello to people in passing.

[Mrsjayy]

Could your husband drop off food he should be able too ? You must be beyond knackered go home have a shower and a sleep go back tomorrow take food in with you and you should be able to cope a bit better.

[princesspuds2004]

Hockey, I have a 15 yr old dd with Hydrocephalus, she has had a number of shunt malfunctions and also had the external drain fitted, if he has no drain in place atm, he will be crying in pain a lot of the time, have the drs discussed an ETV (Endoscopic Third Ventriculostomy) with you ? This is another way of treating Hydro in babies, my daughter had one but it didnt work for her as she was older. Have they discussed when they may be putting another shunt in and are they regularly monitoring head size ?
There is a charity called SHINE who would be able to help and may have a support co ordinator in your area.
Please feel free to message me if you have any questions or just want a rant

[Hockeyboysmum]

@princesspuds2004 they think its okay to leave at the moment as the drain overdrained so his head is a bit sunken. Pic attached is it better!

They did discuss etv option but surgeon didnt think it would work for ben and said it would involve a lot more hospital stays which given covid is too big a risk just now. I did think it it was worth trying but he didnt and hes the expert.

I think shine only covers england but i have been in touch with spina bifida and hydrocephalus scotland charity who have been brilliant.

Its so hard to know what is normal newborn fussines, what is reflux and what is hydrocephalus. Drs keep asking me if uis behaviour has changed etc. With all the ops and procedures etc im not sure i know what his normal is. He has tiny veins so everytime he loses a canula (frequently) it takes about 6 attempts to get another one in. He screams i cry and the drs look stressed. They all know his name and dread being called to do it now.

[Hockeyboysmum]

@princesspuds2004 head being measured daily and has stabilized. Correcting his age to 4 weeks puts his weight on 10th centile and his head size on 96th

[Mrsjayy]

I have a neuro tube defect no hydrochephalus though and SBHS are an amazing support. I am so sorry you are going through this.

[elliejjtiny]

Yanbu. My 6 year old has mild hydrocephalus so I understand a bit of what you are going through. Talk to the staff and if you are allowed to go home for a break and some food do so without guilt.

[Hockeyboysmum]

Just as update ive come home for the night. Wee one had MRI just before i left and surgeon came to tell me hes had a bleed on brain they werent expecting. If i hadnt already told my older son i was coming home id have stayed. Did say the bleed may explain his unsettledness.

[Mrsjayy]

Try and have a decent sleep tonight

[WendyHoused]

You poor love 💔
Have a bath, a takeaway and a cry. Have a glass of wine to help you sleep. It’s impossible to keep going in these circumstances, you need and deserve rest.

There’s a reason they say fit your own oxygen masks first on aeroplanes. If you can’t function, you can’t help anyone else function either.

[IJustWantFiveMinutesAlone]

I hope you get some decent rest tonight. Parenting a newborn is tough enough without any other issues and I really feel for you. I hope the doctors can help relieve whatever it is that is causing him such discomfort. He's beautiful. Congratulations xxxx

[Useruseruserusee]

I really feel for you. My two year old has had five operations and lots of other hospital stays, he is also a non sleeper. I can’t count the amount of times I have walked hospital corridors in the middle of the night whilst endlessly rocking him. It is one of the loneliest feelings.

Please do not feel guilty tonight. You absolutely deserve this rest and physical. I will be thinking of you.

[Useruseruserusee]

Should say physical space.

[AnneShirleysNewDress]

Your wee boy is gorgeous. Rest tonight, hope you manage to sleep.

[Hockeyboysmum]

Hard to believe hes so ill. Although they havent said it i cant help but feel this is beginning of end. Its going to be constant complications till one kills him. I genuinely cant see him coming back home. Just my gut feeling

[Needmoresleep]

OP, what a living nightmare.

However one thing that you need to remember. If you don’t look after yourself, you will not be able to look after anyone else. If it is getting to much you are absolutely doing the right thing by saying so.

Have a lovely break with your other boy and I hope things look more positive tomorrow.

[Grumpos]

I’m so sorry you and your beautiful boy are going through this. You’re stronger than you know

[Serenschintte]

He is a beautiful baby. And you sounds like a loving caring Mum who is dealing with so much at the moment.
I hope you manage to get some sleep. It’s ok to do that. And I hope you have some real life support to.

[Choice4567]

He is such a beautiful baby

[IJustWantFiveMinutesAlone]

Don't forget you are probably still in shock. If you only found out about his additional health complications late on and he was born early then you probably haven't had much chance to process it before you were thrown in at the deep end. Xxx

[ComDummings]

I hope you get a good sleep tonight OP what a beautiful little baby.