Struggling to cope with baby's repeated hospital admissions

[Goodluckanddontfuckitup]

NC for this and will try and set everything out as I hate a drip feed.

DS2 is 4 months old and has already been admitted twice to hospital with infections. First time he had a kidney infection and a cannula with antibiotics. We were in overnight and then at the hospital for appointments every day for 3 days. DS was really poorly in the run up to being taken to A&E. I stupidly arsed about dealing with 111 and the GP like you are supposed to do. He typically had temperature spikes when we weren't at appointments, 🤦🏼‍♀️as is the way of the baby. He responded well and had a kidney ultrasound after which was totally normal. I was told this was rare and we were just horribly unlucky.

When DS1 was born he picked up an infection during birth, got jaundice was dehydrated and we were readmitted for a week. He was cannulated five fucking times. The cannula was out more than it was ruddy in. I was there for a lot of the attempts and frankly found it horrific. When they said DS2 needed one I burst into tears and told them about DS1. The doctor said having both your newborns cannulated with different infections is vanishingly rare, she said it was like winning a crap lottery.

We've just gotten back from DS2's second hospital stay. Went in with a suspected UTI but it turns out his main illness was a viral respiratory infection. Basically he had a bad cold. A fucking cold. We were in hospital for 4 days. A&E was BUSY when we arrived and we were straight through. We stayed in the acute care room on the ward most of that time. There were consultants being paged for my baby. His heart rate was over 200 for 2 days and his temperature was 40 and would not come down. They strongly suspected meningitis or sepsis. He was desperately unwell. I was absolutely terrified.

My question I suppose is where the hell do we go from here? He had a cold for Christ's sake! I know it's a nasty one at the moment but it was still a cold. He was surrounded by children that had major surgery, chronic conditions and for a while he was sicker than all of them. I just think it's not normal to have a hospital admission every 2 months. But how do I get him tested when he is medically fine? What would anyone test for?!

I also don't know how the hell I parent normally now. How do I take him to baby groups or happily send DS1 to preschool knowing they could pick up colds there? I am so paranoid about his health it's insane. I just looked up his weight and noticed he's dropped 2 percentiles. I hadn't been worried about it before because everyone comments that he's big. All I do is feed him! But now my mind is going to dark places, why is he lighter than he should be? Why does he keep getting infections? I can't turn it off. I don't know if it's all too raw and I need to give it time. I keep thinking of the reasons why the other lovely children were in hospital and thinking he has the same.

The problem was compounded by DS2 being EBF so I've done all the admissions and stays alone. DH was allowed to drop stuff off and relieve me for a few minutes but that was it. I found it so hard. I felt so alone and mentally I'm in tatters if I'm honest. I flit between thinking this is a normal reaction to an absolutely shit situation and total blind panic about DS2. I don't know where to turn with it all and I'm hoping someone can offer some pointers to help or maybe calm me down at least.

Thanks for reading my ramble too.

Your reaction is totally normal. One of my Ds’s nearly died at 6 week and they had to put a canula in his scalp (the doctor kept telling me to breastfeed him while they were doing it as it wouldn’t hurt as much).

Babies bounce back quickly within 3 months he’d caught up with his twin but we had pressure pads under the mattress which alarmed if they stop breathing for as long as I could.

Not sure I’m helping but time is a good healer, things don’t seem quite so scary the further away they get. Do whatever helps you get by, take his temperature twice a day for instance. He will get stronger. Keep the faith and try to enjoy your family xxxx

Ps my 9yr old has just had a week in hospital and he only wanted me with him. I don’t think they grow out of wanting mum when they’re poorly xxxx

Bless you OP. I get it. My daughter was in NICU when she was born (jaundice and struggled with feeding). She was also admitted due to a cold at 1.5yr.

It's traumatic for sure.

My daughter has a disability and a heart condition.

My ways to cope was a taking a low dose antidepressant (came off it this year with no issues) and I went to baby groups nearly everyday (I had a toddler as well).

I would have lost my mind staying at home and my daughter's consultant encouraged is to get out and about even in winter!

I hope things get better

For a small baby it’s often not a cold, the cold virus RSV in rhem presents as bronchiolitis and although in the vast majority of cases it’s just a mild illness for some it can be really bad. At this time of year kids wards are full of bronchi babies.

Ds spent his first two years in and out of hospital. He is 12 now and still has a lot of health issues but thankfully a lot less admissions.

It’s shit. It’s easy to forget the impact it has on us as parents and we feel like we have to be strong but we don’t. It’s normal to struggle and find things hard, you need to make time for you to let yourself process everything.

You are describing perfectly reasonable worries which relate to the circumstances you find yourself in.

It is very, very hard being on a ward with a poorly baby, especially when you have another young child at home who needs you too.

The worries should ease as he gets better and the assessments rule out things and or give you a plan. If they don't, then speak to your GP.

I managed for years while our son was unwell. Once he was better I fell to bits, this is common, we cope because we have to and once we don't have to we collapse in a snivelling heap.

And, as PP said, have a very low bar for getting medication from your GP to manage your mood.

I have to echo Sirzy - in young children and babies the cold virus can be really, really nasty and require hospital admission, so don't think of it as 'just' a cold. My DD is a paeds nurse and this time of year the children's wards are full of respiratory infections.

It's absolutely horrible when they're in hospital and bound to make you anxious. Hospitals are not nice places especially when you have a poorly baby.

Thank you to everyone who posted. I read them all a few times and found your replies really calming.

We're all feeling better now we've had a bit of clear water since the last admission. Oddly DS2 getting yet another cold has been a good thing. I've seen him as a healthy baby with a snuffy nose, and the difference with how he was in the hospital is like night and day. It's helped me to panic less.

DS1 has developed some health anxiety, and assumes people are going to hospital every time people leave outside of the normal routine. It's understandable and we have a lot of other disruption going on generally (major building project at home) so hopefully that will ease soon. It's a lot to take in when you're 3 and he adores DS2 and missed him terribly whilst we were in.

We have a review meeting to create a plan for DS2 and run some further tests later this month. I'm assessing how I feel until then to see if I need some extra help. I'm not sure if I do or not, but having a low threshold for seeking help stuck with me and I keep reminding myself of that.

Most importantly DS2 is in rude health at the mo and is most likely going to be absolutely fine. Despite aging his mother by about 20 years, but he's very cute so we'll forgive him.

OP, I have a 4-month old too and I very much feel for you. When he was 3 weeks old, we ended up at Emergency Paediatrics after he became lethargic and his body temp dropped below 35C. Apparently he was fighting off a virus but we never found out what happened exactly. Low temp can be a sign of sepsis in young babies though. This experience scared the shit out of me, especially that I lost three babies in pregnancy before him. Also had reduced movements since 37 weeks when I was pg with him and had to be monitored daily in hospital. Genuinely thought he'd die. I'm still very anxious and waiting for my CBT to start soon to cope better. Be gentle with yourself, these things hit us hard xx

Glad to see your update, Good.

It's worth mentioning to DS2's team that you've found it hard - they often have resources that they can signpost you to.

Took me a couple of years (and a very noisy, rather undignified, breakdown in A+E) to realise that. The hospital had lots of groups of parents in similar positions - talking people who had the same pressures as me was really helpful. And they gave me lots of nuggets I hadn't figured out, like where to get a bite to eat, where to park, where the quiet corners were for when I needed 5 mins off the ward, what I needed to bring with me when we were in. Absolute God send.

Sounds like Santa needs to be very good to you this year. You've earned it.