DC in intensive care & another at home - How do I cope? Think I might go mad!

[twinmam]

I am grabbing 5 mins whilst my DD1 is asleep. Am home from hospital for the first time in days to spend some time with her. Basically what happened is this: DD2 has had a cough I've been concerned about since Jan, mostly at night. Have been to GP several times & virtually been accused of being a fussy mother, nothing to worry about etc. A week ago on Sat she developed a very croupy cough, barking etc and by the evening her breath sounded very heavy. I rang the out of hours dr and we ended up being taken into hosp where she was given steroids for what they thought was croup. She was given 6 doses of 3 diff types of steroids but her breathing didn't improve. They transferred us to another hospital on Tues where there are ENT paediatric specialists. On Wed night she was struggling so much with her breathing they transferred her to intensive care. On Thurs they took her into theatre to do an endoscopy. They were reluctant to as they knew her windpipe was very swollen but decided they would need to put a breathing tube in etc. They found a severe infection but nothing else as it was all too red and swollen. They are thinking she may have an underlying structural weakness, possibly a floppy larynx which has meant the chest infection was so dangerous. They were going to bring her round from sedation today (she has been under since Thurs) but windpipe is too swollen still so too risky so they will review tomorrow. They are using the size of breathing tube they would normally use on a newborn (she is 16 months old) and it is still really tight. Hopefully the antibiotics will really kick in and she can be woken up and have the tube removed tomorrow. They will then do a barium swallow and possibly another endoscopy or look further down at a later date. I feel a bit as if my head is spinning. Just over a week ago we were living a normal life and I was complaining about what hard work it is to look after two babies. In the last week I have held my daughter down whilst they have tormented her, taking blood, repeated cannulas, nebulisers that have terrified her.... Handing her over to the anaethetist on Thurs was the hardest thing I have ever done. I literally felt as if someone was ripping my insides out. And we have our other DD at home. DH is sleeping at home and I am at hosp so we can try and give her some sense of normality. My parents are looking after her and DH's parents have flown back from abroad to help. We are lucky that we have a big support network and that the paediatric staff are wonderful. The consultant even hugged me on Thurs when I was a mess and the surgical team were promising me they would look after her. The anaethetist told me had 3 Dcs of his own and he would take good care of her. They were true to their word because she is still here and I am eternally grateful. I feel so torn though. I feel as if by leaving the hospital something could happen but then I feel guilty for not spending time with DD1 who has been saying 'Mama mama' for the last few days and even kissing a picture of me It has all been so frightening and surreal and I am just longing for an ordinary life. Not really sure why I'm spilling my guts on here other than that in RL I am feeling the need to stay really really strong and positive as that's the only way I'm holding it together. Has anyone else had a similar exp and returned to normal life? How did you cope? What is the best way to get through this nightmare? Thanks

wanted to add hope dd gets better soon

Been in a very similar situation with dd2 in and out of hospital over 18 months. The worst was when she was in PICU for 2 weeks at the Evalina childrens hosp I stayed there the entire time. She was 9 months old. DH would bring dd1 up to see us both when he could.

Everyone helps out and don't be afraid to ask for help. DH was a rock as were our friends and family who helped look after dd1.

Don't forget to look after yourself.

dd2 was in hospital last year with beathing tubes up her nose and otherwires and things but no where near as bad as your dd.
Things that helped were DH coming with dd1 so I could see her, and spend some time as a family. Used to bring dinner too, so we could eat together.
Get others to do shopping, washing cleaning ect.
Dont worry too much about LO at home, you would be amazed how well they cope and she'll be fine. Look after yourself, eat well, and use the help you have.

Hope things are improving for you and your family.

Hugs

Oh twinmam How awful. Not been there thank god but you have all my sympathy. I'm glad you have a support network round you and the hospital is doing it's best. Fingers crossed for little DD.

god you poor thing

and your poor dds

hopw she is improving now

take care of yourself

(((twinmam))) you poor love, its a nightmare situation to be in and I'm just glad you've spilt a bit somewhere. Holding it all together is too much to bear, even though you are having to bear it for most of the time.

I was in v similar situation for a week when dd2 was a month old, and dd1 was just 3 (it was her birthday, and Xmas, when dd2 went in to hospital). Reading your post brings it all back, and I can tell you honestly that you life WILL return to normal, and at the same time, that I have not forgotten what it felt like and it hurt for a long time - not least that feeling of being torn between my LOs. dd2 recovered fastest, and dd1 needed to talk about how she felt when dd2 and Mummy were 'in hospital' for some time - but is fine now.

dd2 has a floppy larynx, and ended up in HDU on CPAP for a week with bronchiolitis as a result - we've had ENT issues with her since, but never anything as scary, and she's very much a normal 2.5 yr old now.
Its utterly surreal, trying to go between the intensity of hospital life and attempting normality with your other LO for the brief periods you get home. Surreal and very, very exhausting.

Adrenalin does get you through, as does the kindness of strangers (our family were all away, it was just me and dh), until you can let go a bit...and IME, thats when the exhaustion and grief/anger kick in. Its the start of getting back to normal.

Meantime, the things that helped me: talking to others who'd been through similar and were through it; chocolate without guilt; the hospital's parents' room; shouting and crying in the car between hospital and home; reminding myself that there was NOTHING I could do to make it all better for my dds, except what I was doing, and that they would be ok and recover after the crisis had passed. And they are.

Will be thinking of you lots, let us know how she is, and how her sister is, and how you are especially, when you get a chance.

Most of all, wishing you little dd better and out of IC asap xxx

Thanks so much everyone. We are no further forward at the mo which is very frustrating so have come home to spend more time with DD1 (who is very contentedly watching Cbeebies sitting on Dh's lap at the mo!) They were going to take DD2's tube out today but her windpipe is still too swollen so they will look again tomorrow and then if no change by Thur the ENT consultant will have to come and have a look. I'm trying not to think that far ahead and worry too much, just taking it day by day. I think it's just that the infection hasn't gone yet so it's all still inflamed. The thing that is hardest at the mo is that I just miss her so much. It has been nearly a week since she was 'with' us rather than unconscious and I just want to hold her and hear her voice or see her smile. I'm worried too about how DD1 is coping not just without me but without her twin. They have never been separated for more than a few hours before in their life and before this never overnight. The best thing is that neither of them will remember this (tho we will never forget!)

Thanks for all the advice. Am def doing the crying in the car thing but I am managing to not cry whenever I'm with either of the girls. Coming home is helping as it is that little bit more normal but then there is this huge gap where DD2 should be and I just feel hollow. I have been speaking more to DH about how I feel and we've discussed how much we're yearning for a return to normal life. I do feel quite grief-stricken and surprisingly angry at the moment, Elibean - that definitely made me think. It just seems so unfair which of course it is. It is very reassuring to hear of others who have been through this and returned to normality afterwards.

I will update as and when I can. Once she is awake I imagine I will be at the hospital constantly again which is why we are so fortunate to have family who are staying with DD1 and spoiling her rotten, people she is used to and loves so she still feels secure.

We will get there I am just so very desperate now for DD2 to be awake and in my arms

Of course you are

I remember a nice doctor looking at me and saying 'its a bit like watching paint dry, waiting for them to get better, isn't it? She will, though' and that helped hugely. As soon as she turns a corner, it'll go in leaps and bounds - this is a hard, hard bit.

dd1 sounds in very good hands, and in good shape too - I wouldn't worry too much about the impact, because life is full of impactful events (iyswim!) and the most important part is not so much them happening, as the support and love that helps us/them deal with it all. And your dd1 clearly has that in bucketfulls.

She will be missing her twin, and you, but she'll be reaping in loads of attention and time from Daddy and other relatives - so a mixed bag, for her!

Hang in there, the infection/swollen windpipe thing makes sense to me - non-medic though I am. xxx

And yes, hugely unfair, on all of you.

Wishing you all the luck in the world. I remember that too missing my little son cos he was unconcious .The same with your DD. You cant hold her or hug her... and you miss her smiles and interaction with you and her family. It will soon be over this horrible ICU bit... fingers corssed for you. Keep us posted here. x

What a terrible experience for you all It sounds like you are doing all the right things though. Your dd2 needs you with her and your dd1 will be ok surrounded as she is by love.

Another well wisher here; hope you have your DD home soon and both of them running around keeping you busy.

Hope today has been a better day for you

Thinking of you and the dds, Twinmum.

hi there !... im a twin mum 2. just to let u no that ive bn there nt so lng ago. my ds had same symptoms and more,had to stay in hosp wth him while he had his op for floppy larnyx and breathing probs. its the hardest thing i had 2 do but had no choice! i hope u and ure little family r ok. can i jst say that most flop larn, mend on thr own without intervention so not 2 wori.... my younger twin stayd at home but visited everyday with his dad which worked out better in the end although i missed him dreadfully!! im stil dealing with on going problems and attending hospitals ev mth. you just have to stay focused and relax which is easy to say but things wil get easier. hugs & thoughts xx.

Just an update from me. We are no further forward unfortunately She has now been in intensive care and unconsious for 8 days and at times it feels as if it's tearing me apart. I'm home tonight because DH practically dragged me away this evening. I've been living in hospital for 2 weeks now and it actually does feel nice to be at home although obviously I keep worrying that the phone will ring and there will be a problem. The reason DD2 is still unconscious is because they have to leave the breathing tube in (still a tiny newborn size tube) as her windpipe is still swollen, no sign of it going down at all. They were talking about the possibility of another infection on top of the one she already has but bloods suggest otherwise. It could be something viral - we're still waiting on those results and wont have them for a few days. So, we're where we were a week ago with her still sedated, still on antibiotics and waiting for the swelling to go down. They obviously can't give us any idea of when this will happen and I must admit it is starting to frighten me that we're no further forward. I keep worrying that the potential underlying problem (floppy larynx/ blood vessels constricting things/ whatever it is) is worse than we thought and that she could be in danger. The drs haven't given us any reason to think this and have reassured me but it all just seems so wrong that she's still going to be lying there on Monday a whole week after they said they'd bring her round. She has lots of secretions when they do physio so that ties in with the infection being there and her chest x ray today showed fewer problems than before so maybe it's clearing up. All this waiting is so frustrating and I miss her so much. It's been over a week since I heard her voice or saw her smile and it sometimes feels unbearable especially when we don't know when we'll be able to have her back. I said to DH today that I feel as if she's slipping away from me. I know I'm just tired and low today and that a night in my own bed will help me be strong again tomorrow.
DD1 is doing brilliantly. She is being spoilt rotten by her grandparents and is loving it. She is my one ray of sunshine at the moment and I'm managing to get a few hours with her every day. It will be lovely to be there when she wakes up tomorrow.
I did get to cuddle DD2 today for almost 2 hours. I got very upset and broke down and the wonderful nurses got her out of her cot (no small task given that she is attached to a million tubes and wires) so that I could sit holding her. It was a very precious moment and did make me feel a lot better. I hope that she could feel and hear me and know that I'm there rooting for her. I felt so close to DD when we were in hospital in the days leading up to the op, like it was just me and her against the world IYSWIM as we were sharing every minute of each day and she ended up sleeping with me most nights so I could settle her. I just have to believe that she can hear me and knows that I'm nearby most of the time.
Thanks everyone for sharing your experiences and offering your support. I know that some of you have been exactly where I am now.
Riven - I know you've been there more times than anyone should ever have to. Of course no one should ever have to at all. Thank you for your kindness and solidarity.

Stilling pulling for you here twinmam......lots of hugs and fingers crossed. I hope she pulls through very soon.

I am sorry that you are still all going through this. I hope things improve really quickly.

Just wanted to add my good wishes to you and your family. I hope you get some news about your DD soon. Take care. Will be thinking of you all.

omg you poor thing

so glad you got to hold her

I really hope things start to improve soon - the chest x ray clearing up sounds positive doesn't it, poor poor poppet

will be thinking of you

twinman, I couldn't read and not post. What an awful thing to go through - I hope you got some sleep last night and they get to the bottom of it soon. I am sure she knows you are there for her. xxxx

Aww twinmam I do feel for you. My dd was in PICU for 4 weeks fully ventilated and I know how precious that cuddle is. When people say that their arms ached to hold their child it really is almost a physical pain isn't it?

I had two boys at home during this period and they did fine honestly. It was tough on them at the time but like yours their grandparents did a sterling job.

I hope your dd starts to improve soon. Take one day at a time and look after yourself too; make sure you're eating properly.

Another person thinking very positive thoughts for you and your dd. I'm sure that holding her helped her. Hope she feels much, much better very soon.

Thanks again, all of you. I DO feel much better for a night in my own bed and especially for being there when DD1 woke up. MIL and FIL are at the hospital with DD2 at the moment and I'll go through this afternoon. I guess I'm just so frustrated with it all at the moment as we seem no further forward.

Maltesers - it does sound like your DS was in a very similar situation, poor love. It's so reassuring to hear that you all got through it and that he's now well, bless him. They did tell us a trachi was a possibility and I guess it still is - esp if the swelling won't go down. The very idea of it breaks my heart, just as it did yours - the idea of us 'losing' her voice. She was a real chatterbox before she was ill and the thought of not hearing her is just awful. Of course it might not come to that but it just makes me feel so helpless. I would give anything for it to be me and not her who is ill, it just seems so wrong. What symptoms did your DS have for subglottic stenosis to be diagnosed? I know I'm second guessing everything at the moment but it does help me to have things in mind that I can discuss with the doctors. It seems better to be informed than be wondering and it does seem odd that there is no reduction in swelling at all after 8 days. That said, there are still secretions so I guess the infection could still be going strong. Also her temp keeps going up although they are controlling it with paracetamol.

Saggar - it IS a physical pain isn't it? I felt that the most when I handed her over for the op - as if they were ripping her out of me. I had stayed so strong before then but I just collapsed at that point, it was just agony. Thank god they brought her back to us safely. I do ache for her, to be able to look into her eyes, to be able to hear her voice, to have her put her arms round my neck. I'd even gladly have one of her mega tantrums at the moment!

I just have to believe that we will have all of that again and that it won't be too long as this waiting is starting to feel unbearable.