Scbu

[caliwoo]

Hi All,

I am a student midwife and am currently doing a presentation on feelings of parents/grandparents/siblings who have a baby in special care. I have read through lots of ppl's expereinces but they seem to talk about more what happened as opposed to their feelings. I have had a daughter in scbu who passed away after 2 days and so do have expereince in this area, however I do not want to talk about my own expereinces during my presentation. If anyone would mind helping, even if it is just a paragraph or even a sentence about what you were feeling with regards to things like, being away from your baby, your fears, concerns. Anything really that you would like to share.

I am going to read them out as if it is you all saying it.

I appreciate any help that anyone would be willing to give. x

 

[AP]

i will think about this and post something later tonight when alex is in bed. xxxx pinkie promise

 

[Marleysgirl]

How did I feel?

Primarily, oddly detached. Certainly when Andrew was in the incubator, cuddles were few and far between. That, and the fact that I'd never been hugely pregnant, meant that I didn't feel as if I'd given birth to him, as if he was mine. I didn't really bond and feel that huge rush of motherly feelings until the last few nights when I could stay on NICU and keep him in a room with me overnight, I was solely responsible for him - then he became mine

 

[AP]

At first, I felt loss. Loss of a pregnancy, but after 2 miscarriages, I felt like I lost Alex, and I couldn't picture ever getting her back. She seemed forever property of the hospital. I cuddled a teddy at night when I went home, for it seemed the only comfort I had now I didn't have her kicking about inside me.
Taking her home was an experience just as odd - I cried because I was scared I would miss SCBU and the nurses, I cried because I wouldnt see them again. It became such a huge part of my life and routine.

 

[hopedance]

At first, I was just overwhelmed with relief that my terrible pregnancy was over (selfish, i know) and relieved that the baby was here, alive, and doing as well as could be expected.

But then as the days/weeks slipped past, I felt like he wasn't really mine. I mean, I felt like he was my baby, this tiny piece of me and I loved him so much I ached inside to have to leave him, but I felt like I wasn't allowed to own him; the hospital/SCBU owned him. I was so afraid they weren't going to let me keep him; that I wasn't a good enough parent because I was always desperate to hold him without consideration for how tired he was, etc, and I never wanted to put him back in the incubator once I had him in my arms. I could hardly believe it when I was allowed to take him home, I wore him all day in a stretchy wraparound sling on my chest, and at night he slept in bed with me. I remember my mum saying that I was addicted to him. And I still am!!

I was also angry a lot - I was angry that nobody seemed to care, when I said I had pre-eclampsia and was going to/had had him early, people acted as though I was in the last weeks of pregnancy and acted as though he would be home in a day or two; nobody was shocked, and very few people were supportive, practically or emotionally. And when I started showing people photos, some acted disgusted by his tubes and wires, and then I was livid!!! I barely saw the tubes and wires, I only saw him and his gorgeousness!

 

[caliwoo]

Thank you all so much for sharing your experiences.

 

[toothfairyx]

I felt that I was in a total state of disbelief and shock for a while. I didn't find it hard to leave Jamie in the hospital at first as he looked so vulnerable I knew I had no idea or capability to look after him so it was actually easy to leave him. I didn't ring the hospital for updates incase they told me something I couldn't face hearing. The only time I started ringing was when he went into the nursery to find out when the feed times were. The longer he was in there, the more I got separation anxiety.
I also felt cheated out of a "normal" pregnancy. I was scared and sad in a way to bring him home as I'd got used to the hospital environment, liked the staff (the nurses were very supportive) and it felt like a safe environment for us.

 

[Laura2919]

At first I dont think I felt anything. I didnt see them until they were 5 days old so I didnt really feel they were mine as I hadnt seen them properly, Just a quick glimpse of Chloe before she was taken to another hospital and pictures of Jaycee.
Once I see them the fear set in, scared that I would get a call to say my babies didnt make it, the fear of not knowing what to do with a baby the size a mini baby born. It was hell on earth for two weeks and then once progress started being made and we could hold them and bath them and they were moved out of incubators and into normal hospital cots I couldnt feel anything but happiness and I was so so proud, and I still am.

 

[angelstardust]

It didn't feel real. All 3 were in SCBU/NICU and with all 3 it seemed like a long dream. I walked through the brighlt lit corridors at 3am into a room that had a UV blue tinge even during the day and cared for this alien child with a constant audience.

I found I coped for the first week then something would snap and the hormones would kick in and everything came crashing down. The lights and smells and noise was too loud and bright and I Had To Get Out. I came home for a night, slept in my own bed and went back in the morning ready to go at it again.

The feeling is not confined to SCBU. My daughter was recently very ill and was in Yorkhill sick kids. Again, it didn't feel real. They were talking about liver transplants at one point and it suddenly hit me. But I had to swallow down panic and go back to the numbness, it was the only way I could cope. My middle child has been in and out of hospital most of his life and each time there is a feeling of numbness, detatchment. You do everything you are supposed to but you always feel like you are pretending.

Then you get home and there is a deep down edge of panic because you are not entirely sure you are doing it right. You miss the audience and feel a bit lonely at times. Hard to describe really. You feel like there is something missing.

The worst thing for me was the little comments that meant very little, but you take to heart. I remember when Amber was in, nobody visited her except her Dad and I. We didn't bring the boys up becasue we didn't want them seeing her with drips. My friend came up with her daughter and I got told off because there was only to be 2 to a bedside. I couldn't wait outside, we couldn't leave my friends 9yr old outside, so we had to leave. My daughters first visitors were told to leave.

With the second and Amber I was aksed a few times if I was a single mother because my husband was not up next to me all day. he was at home taking care of our other child/children.

In my non hormone influenced state that doesn't seem so bad, but at the time I was in tears.

 

[TwoBumps]

At first it was an overwhelming feeling of relief. My horrendous pregnancy was over & the boys were doing well, breathing on their own with the minimum of support.

Then I felt guilt. Horrendous overwhelming guilt. It was my fault they were on ventilators and fighting to live. Why hadn't I been able to carry them to term?

As time went on (& I suspect my hormones calmed down!) I felt less guilt & more helplessness. They were my babies but I couldn't care for them. I was told when I could feed them and whether it was by bottle or tube, I couldn't bath them or change them when I wanted them too. I couldn't even show them off to friends and family. I also felt overwhelming protectiveness towards them. I hated my MIL & family trying to come & visit them every other day! I also felt frustration. When they told me to aim for their due date for them coming home I didn't believe it could possibly take that long, but as the weeks ticked by I would sob as each milestone passed & they weren't home, first 4 weeks then 6 weeks - I began to think I would never get them home! I also really started to worry. I never thought for a second that they wouldn't be ok, but when Joshua showed no signs of coming off his oxygen and they began to talk about CLD I worried so much that he might suffer the consequences of his early birth for the rest of his life. Thankfully he hasn't had so much as a chest infection since coming home!

Now they are 15 months old & most of the feelings have gone - apart from the guilt. I still feel guilty that I gave them such a rough start in life (even though they are absolutely fine now) & strangely given how awful my pregnancy was, I feel a little bit cheated that I didn't go full term & get to experience the excitement leading up to the birth.