Our neonatal experience
29 May 2019 | Tamsin Kingsley
A few months back a friend of mine had a baby who was poorly and ended up on neonates. I was in text contact with her and as I tried to offer help and advice (probably totally unsuccessfully) a lot of memories and feelings came flooding back from my own time with a baby there. Many of these memories I hadn’t thought about since the time, so I thought it would be good to commit them to paper (or you know, a virtual cloud somewhere), as an important part of the lives of my whole family. The last ‘story’ blog post I wrote was about Izzy’s birth and initial immediate struggles which led her to be taken away to neonates. So I thought I’d start where that left off, when Izzy had been whisked off and we were left without a baby to hold on to, and instead with a lot of unknowns and possible diagnoses. I could probably write a whole blog on my emotions over the course of that first night (she had been born at 11pm) but that wouldn’t be a fun read for anyone, so I’ll try and quickly get onto what quickly became my second home, neonates.
Amidst all the turmoil of that first night, there was a fairly hilarious moment not long after we’d had all the exciting news delivered. The midwives had left to give us a bit of space (and because I’m sure they had better things to do) but then there came a tentative knock on the door. In came the poor student who I’d probably already traumatised with my quick birth (the third she’d seen) and said she’d forgotten to take something. She grabbed a bowl on the side and ran out as fast as she could. Obviously terrified of being left with these emotional parents, but also hugely embarrassed at her task- the bowl contained Izzy’s placenta. You probably had to be there but Dan and I couldn’t help but laugh. Unfortunately, there was a lot more crying than laughing that night. They eventually moved us from the delivery suite into a private room (which I was hugely grateful for) on a ward. We were assured that it was really close to where Izzy was, which in my ignorance I thought would mean something very different to what it did. And then we were left….for a long time. Hours went by and all I could think was that I needed to be sleeping in preparation for my upcoming sleepless nights (little did I know), but I couldn’t sleep. I had no idea of the extent of Izzy’s difficulties and just wanted to be reunited with her and take her home. We didn’t know whether or not to text our families who had known I was in labour with the news of the birth, without knowing if she was ok. So we left it.
Eventually we got a call that we could go and see her so we set off. Thinking she was ‘really close’ I set off on foot but at the pace I was able to walk it felt like miles to walk through the hospital corridors to the neonatal ward. Our baby was in a box and hooked up to oxygen, fluids and monitors. Babies who arrive naturally are often quite squished so change a lot in the first few hours- these things combined meant she now looked quite different (see photos below), but very peaceful and beautiful. Reassured that she was ok we finally announced to our families that she’d arrived. For the first five days I lived between my postnatal ward and neonates, before I was discharged as a patient, leaving Izzy on neonates. Everyone seemed quite apologetic that I couldn’t stay at hospital, but if I’m perfectly honest, I was desperate to get home. For a year and a half Lauren had been my baby, occupying my time, thoughts and energy, and I had never spent so long away from her.
People talk about fear of the unknown, and the neonatal HDU (High Dependency) and ICU (Intensive Care) rooms were certainly unchartered territory for us. They are hard to describe to those who haven’t experienced them, but the otherwise quiet atmosphere is dominated by constant beeping of life saving machines. As we learnt later on, this does not indicate multiple emergencies constantly occurring, but is mostly feeds and IV drips having finished and no one being available to disconnect them, combined with badly calibrated monitors (we quickly learnt how to sneakily change the parameters of Izzy’s). But it makes for an uncomfortable atmosphere. The nurses have a lot of work and aren’t always available to update you when you arrive. As I got to understand everything a bit better I would content myself with reading her medical notes on arrival, but at first it was quite disconcerting to just walk in and not quite know how your baby was doing. Another difficult situation was coming in on a morning and finding an empty cot or another baby where yours should have been- they regularly rearranged the ward and moved children between rooms without informing us. Whilst you know they would have told you if something bad had happened, there was always that moment of panic.
I struggled at first with not knowing what was expected of me. As the weeks went by I became confident handling Izzy with the equipment attached, as well as learning to change her nappy and wash her and doing her tube feeding; but at first I would just sit next to her cot not knowing what to do or think. It was a million miles away from my expectations of the first few weeks- dancing round the kitchen with Lauren with the baby in a sling or trying to have a tea party with Peppa Pig whilst breastfeeding. I had been all ready to be supermum, but only in the way I had planned. Not with my two children miles apart, trying to live double mum life.
And it really did feel like a double life. The strangest thing was how normal everything felt when I came home. Lauren was ready to welcome mummy home with open arms, and was obviously totally ignorant of all that had gone on. When I first saw her again, she poked my tummy, saying ‘baby?’ as she had been for the past few months. But satisfied with the explanation that baby was now in hospital, it was down to the importance toddler business of playing, reading and singing. I spent my days at hospital, coming home for dinner, bath time and bedtime. In my head I tried to justify my absence by saying that to her it would simply feel like I had started a new full time job, something many mums do without guilt (and rightly so). Sometimes I would take a morning or afternoon away from hospital, and I even had 2 or three whole days away. Some people might say I should have been with Izzy more, but it’s hard to explain the oppressive atmosphere of neonates, and how the contrasting fun times at home with Lauren genuinely kept me sane. At home there was very little evidence that I’d even had a baby. Little babygrows hanging on the washing line, nappies on the shopping list, but that was about it. I found it hard seeing friends, as no one knew what to say. Even harder was seeing people who hadn’t known I was pregnant, and in response to the normal ‘how are you and the family?’ having to answer that actually I’d had a baby the week before. You usually don’t have to tell people that you’ve had a baby, as it is so much in evidence, and it felt very unnatural and sad.
I guess if I’m totally honest, the fact that I could spend and even enjoy whole days away from my newborn baby shows that we hadn’t yet got a great bond, which is hardly surprising. You know that instant surge of love you have for your baby when they’re born? I never had that with either of mine. With both girls, the few hours following birth were consumed by wondering why I was still in so much pain and discomfort if it was supposed to all be over. I just didn’t feel like I had enough energy to get excited by the baby- Dan gave both girls their first proper long cuddle while I recovered. The difference was that the first night in hospital with Lauren I was up all night with her in my arms feeding. When I used the toilet on the ward, I heard a cry and knew it was my baby. In contrast, the first time I went to see Izzy on my own I walked over to her cot and looked in, and then had a sudden panic that I could have got the wrong one- I couldn’t remember what my baby looked like. For me, building up a relationship with my baby girls took spending a lot of time together. This is not something I had the opportunity of doing with Izzy in the first two months. Even holding her required help from a nurse at first, and for her head to be supported in exactly the right position so that her oxygen levels didn’t drop. Her nappy had to be changed with her lying on her side (for her airway) and don’t even get me started on changing her clothes. But the most stressful part was trying to breastfeed.
Now I hear the term ‘negative breastfeeding experience’ usually used to describe when people have had a tough start with feeding, often due to lack of appropriate support. Now I would never want to discredit anyone else’s experience, but I reckon mine has to be up there with the most traumatic:- at least one nurse standing watching the colour of your baby while you try to manhandle a super floppy baby with tons of tubes and wires attached into a good position in an incredibly uncomfortable chair and vaguely trying not to expose yourself to the whole ward. She might take a few mouthfuls before the machines monitoring her oxygen would start getting overexcited and a few more people would come over and decide whether or not to start blowing oxygen in her face. I was so determined to show that I could do it, but struggled to come to terms with the fact that Izzy just wasn’t able to feed orally at this stage, whatever I did. *I won’t talk too much about this as the topic of breastfeeding probably deserves it’s own post*
Continuity of Care
One of the hardest things we found about Izzy being in hospital (both on neonates and afterwards) was the lack of continuity of care. Over the first few days we got to know the nurses and consultant working that week, but no one warns you that the consultant will change the following week, and that you may never see those nurses again. I really struggled with building up a relationship with professionals only for them to change… again. Generally ‘handover’ was pretty good, but occasionally it did feel like ‘handover’ was synonymous with ‘chinese whispers’ (if that’s even an ok term to use these days). One day I came in only to be told ‘Did you know Isabelle struggles and turns blue when she lies on her back’. I think my response wasn’t terribly polite, explaining that this was literally the reason she was in hospital. Another time Izzy had been ‘unsettled’ all night and ended up moving from HDU to ICU as she needed more breathing support. This meant that overnight her consultant changed to a man who had never met her, and yet on ward round told me with confidence that she needed a tracheostomy. It was something we were in discussion with other doctors about already, so wasn’t a shock, but it made me so angry and upset that he thought he could read her notes and know what was best for her, without even meeting her and me. The other problem with this situation was that I believe Izzy being left ‘unsettled’ i.e. crying all night was the reason she started to struggle, since her obstructive breathing always got worse when she cried. But chances are that her nurse hadn’t been made aware of this, or else was too busy to prioritise comforting her. Following my complaints about this they made a sign to put on her cot- see below.
After many false starts there came a day when I was finally able to…..take Izzy for a walk along the corridor!!!! Only I couldn’t. I asked the nurse to come with me; I had never been alone with her and it was terrifying. She had to wear an apnea alarm at all times, and I had to carry a suction machine under the buggy to deal with secretions that affected her breathing. As with everything, we got used to it a lot quicker than anticipated, and before I knew it I was ‘rooming in’ on the ward- two nights in a special room for just me and her. When we were finally discharged we practically ran out the hospital before they changed their minds. To be honest this was a genuine concern, and to this day neither us or Izzy’s respiratory consultant are sure how sensible a decision it was (for her not to have a tracheostomy), although we agree it all worked out in the end! She had barely passed the ‘car seat test’ (in terms of her oxygen levels staying stable in the car seat) and we basically had to take her on the 15 minute journey home with a promise not to put her in the car again until she was a lot stronger. Perhaps we were over cautious but we didn’t even make it home without stopping to settle her. I wasn’t ready to go back and would do everything I could to get her home safely, even if that meant cuddles in the kfc car park!
Having written all this I realise it comes across as quite negative, but I think it would be wrong to hide what it was really like. One major positive was the sleep! There was no possibility of sleeping with my baby so I had no choice but to sleep at home, which was blissful. The worst thing about having a newborn is usually the sleep deprivation, and so while I was hormonally and emotionally all over the place, I was well rested. Admittedly, other than that it is hard to find many positives, but neither was it totally awful. My baby was alive and eventually got to come home with us. There are many people who never get to experience the joy of taking their baby home from hospital, and so whether that is on day 1, day 21 or day 201 it is always a cause for great celebration. For those going through the neonatal experience I would just say that it will end eventually, though it may feel like forever. People told me it would soon be a distant memory and they were right, soon you will be home and making the type of memories that you imagined you would from day one.
It is not unusual for babies to end up on a neonatal ward, although often more short term than Izzy, so hopefully my experiences might help you to support someone in the future. Please don’t ever judge how much time parents spend at hospital or with their other children (if relevant). We were only able to be there as much as we were because of the immense kindness of family and friends, and there are a hundred reasons, practical, financial, emotional etc. why a parent may not be with their hospitalised newborn as much as they would like. If you have friends in hospital, keep contacting them. Messages of support will at worst be ignored (unlikely) and in my case were all read and appreciated, though rarely replied to due to the complete chaos going on both around me and inside me. If you don’t know what to say, just say ANYTHING as long as it is nice! And offer to visit. Parents of poorly babies still want to show them off to the world, because no amount of tubes and monitors make them less beautiful.
I am a 30 year old living in Leeds with my husband and two children. I am a full time mum and carer to Lauren, 4 years and typical, and Izzy, 2.5 years with Down's Syndrome. Izzy has complex health needs mostly due to her low muscle tone, and struggles with feeding and breathing, resulting in tons of appointments and hospital admissions. Both children are happy and full of life, and our family all love each other very much.
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