Baby been in nicu, now at home

[Jorowe]

Hi all,
Not sure really if this is the correct post as I have never done this before but just wondered really if anyone had been through anything similar and could give me some advise.
My second child was born in September last year. It was a difficult pregnancy where suffered from hyperemisis and then high blood pressure. At 31 weeks the midwife noticed I was very swollen and so I went to hospital and they said I had preeclampsia, they did a scan as when they monitored the baby it was a bit in distress. The 20 week scan had been fine. They found that they thought I had diabetes aswell and also polyamnious and that the baby was anaemic. They also found what they thought at the time was an ovarian cyst, I had to be told the sex as I didn't know but obv they had to tell me as a boy doesn't have ovaries! I then had to have an emergeny caesarean. She was taken straight to icu as she was struggling to breath and needed a blood transfusion. She was ventilated for 2 days and then in nicu for 4 weeks. They need to run lots of tests to find out what the mass was, it was 8 cm by 8 cm. she was transferred to another hospital at four weeks old and then was in a different hospital for two weeks where they found that she had a benign liver tumour, she had to have a liver biopsy as they thought it was an inoperable cancer tumour. We were obviously really pleased that its not and it's something the should not affect her and should shrink over time.
She came home overall after six weeks in hospital. She has done really well and is growing and her development has been great. I just feel though like since we have come home it's not stopped, she had a few blue episodes at the beginning because she got really bad reflux, she has had apnea episodes, breathing fastly, horrendous reflux, constant scans on her liver, an MRI as the benign tumour had grown an extra bit and they weren't sure what it was, it is fine. I also have a 22 month old whom I left at home when my seco d daughter was in hospital.

I have found now that as it has settled and there is not as much going on that what we have been through has got to me. I have been agitated, anxious, irratable, sleeping badly, not wanting to leave the kids. I went to the docs last week and he said that I am suffering from depression and has given me some tablets and referred me to therapy. However I am just wanting to know if there are other parents that have maybe felt like this after something has happened to them and if they could give any advice on other things to try before I take te tablets? And if anyone else's baby had been on nicu and how they felt after the experience? I know i am very lucky as I know that my baby is home and it could have been very different but I can't help feeling a bit overwhelmed.
I hope this makes sense.

Oh bless you. You've been through the mill but how you feel is a normal response to trauma. I have been through similar and, like you, I 'crashed' a bit after the experience was over.

The potted version of our story is that DD was conceived via donor egg (premature menopause - a traumatic diagnosis in itself), I lost her twin at 5 weeks but we didn't know until 7 + 2 that I hadn't completely miscarried. At the 12 week scan they couldn't get a very good picture - slightly low fluid and (I didn't find out until much later) DD was measuring small. 20 week scan DD was measuring 3 + weeks behind- we were rushed to the fetal medicine unit, fortnightly scans, refused tests, 'hung on in there' (DH also lost his job around this time).

At 27 weeks I started to feel pretty rough- V swollen, giddy etc, 29 weeks admitted to hospital with pre-eclampsia, somehow managed to hold on until 35 weeks (at 32 weeks we were given a misdiagnosis during a scan and my consultant started talking about a termination or inducing and not resuscitating the baby. . . ) second opinion turned everything back on it's head.

Eventually, DD was born at 35 weeks weighing a teeny 2 lb 10 ozs but perfect. 28 days in SCBU, 2 weeks in hospital she was born in then 2 weeks at more local hospital.

For the first three months I was on the biggest high. I had my beautiful, tiny little girl against many odds. But then at 3 months she developed a hernia, then they were worried about an odd marking at the base of her spine, she had a hernia repair. . . I did an awful lot of 'googling' and convinced myself that DD had some awful, rare conditions (she had some genetic testing after she was born as the growth restriction can be a sign of chromosomal conditions). I slowly started to feel as if I was losing my mind. I was unable to sleep for fear of something happening to DD. This was where it was almost a good thing DH was out of work as he took DD through to the living room every morning when I'd been up all night feeding her and googling. I felt panicky and was having intrusive thoughts and found sleeping once the sun had risen safer as I knew DH was awake and watching over DD.

As we'd had complications and DD wasn't gaining weight that quickly, we still had weekly visits from the loveliest community special care nurse and when I broke down during one visit, she realised that I was actually a bit of a mess. She arranged for me to see a counsellor based on the special care unit and that was just what I needed. I felt I could actually voice my biggest fears and discuss my intrusive thoughts without upsetting my DH or anyone close to me.

Whilst I've had some amazing moments over the past years, it's been difficult to shake my sadness at having a far from normal conception, pregnancy, delivery and start to family life. I've felt cheated, angry and for the longest time felt unable to be relaxed enough to allow myself to feel happy as I realised that bad things can happen. I didn't end up going to my GP as I'd had counselling but I have had moments (and still do sometimes) where I think I should see my GP. We have other stuff going on in our lives too though.

Sorry to have waffled on but I sometimes thinking sharing experiences can help. To answer your question, things that helped me cope as well as the counselling were: trying to remember that 'a thought is just a thought', I used Bach's Rescue Remedy a lot, I talked about my experiences quite freely as voicing things made them feel less scary, I considered going to the coffee mornings run for parents who'd had babies in SCBU but never got round to it- these might help you if available and I've tried to be kind to myself. It's awful having a difficult pregnancy and being so scared of how well or not your baby will be at birth then not having them with you when they're in hospital. Then I should imagine the episodes your DD has had with breathing issues etc must have been so scary. When you're in the middle of all of that, you cope because you have to. You deal with it and adrenalin gets you through. It's when the trauma is over that reality hits you and then you crumple. Totally normal, I'd say!

Anyway. I need to go to sleep now but I'm thinking of you. You will get through this.

Feel for you. Something similar happened to my SIL and she had a real time of feeling like you.
Chats with GP helped and she had some talking therapy which seemed to help as did time.
Look after yourself. !

Hiya Jorowe,
Just wanted to reply and say poor old you. You have had a horribly traumatic time, and you need to be kind to yourself.
I understand a little of what you are going through, as my now 16 month old was terribly ill at the end of last year, quite unexpectedly, after complications during an operation. He came home 7 weeks later, after 2 weeks in PICU, and 5 weeks on general ward with life changing complications, which massively changed our family dynamic. I also have 2 other young children and it was horrendous for them also, as they had to be left with relatives throughout that time.
I think my main mistake when I got home was assuming that because I was home it would be normal again, and it just wasn't. I had days where I felt incredibly overwhelmed, I cried a lot, and even doing things like the washing up felt overwhelming. I also had a lot of flashbacks to the time when he was so poorly that we thought he might die.
I definitely think there were times when if I had gone to the dr that they would have said that I was depressed, but it didn't take a rocket scientist to work out that really I was just, quite justifiably traumatised by the experiences. I think it was circumstantial depression more than anything else, and I was determined not to take any medication for an experience that I knew I had to work through.
Honestly, I would say that it is only now, 6 months later that I feel more like myself, I still have bad days, where I am transported back to a dark place. But generally life gets easier, and more 'normal'. You learn to live with a new reality of your life, filled with more hospital appointments, you get used to a constant white noisy of anxiety, and things get better.
I talked-to anyone that would listen-family and friends, on the bad days I went over and over the experiences, told them I feel overwhelmed, and it really got me through it. Having people saying 'yes, it was the most horrendous experience, of course you are traumatised' massively helped.
So, you might find it useful to be kinder to yourself, to accept that what you feel is totally normal, you have had an awful time. You will not be the same carefree person you were, but you will get through this, but it will take time, and talking.
Hope some of the waffle helps. xxxx

Hi all,
I want to say thanks for sharing your experiences with me as know it can be hard to talk about it and bring everything back up. I think when you are in the situation you have to cope with it and get on with it to be there for your baby but once it's over is when it hits you, that's what's happened to me. I think talking about it does help, even writing it down for this forum helped! Once I have maybe talked it over with the counsellor I think it will help, I suppose it's just knowing that things can happen so quickly and it being something out of your control but the thing you want to control the most is having a healthy and happy baby. I am lucky to have my two children and hopefully these feelings will soon go, thanks again for your advice and shariNg your experience, it ha helped xxx