Our experience having a baby on the neonatal ward and finally getting home……………
One thing I was told a lot when I was pregnant was how tough life with a newborn is, so I was expecting a bit of a struggle. But nothing could have prepared me for the stress, worry and sleepless nights of having a premature baby in neonatal/special care.
To start I do have to say that our neonatal experience was more or less pretty straight forward. Saying that we still we had our ups and down, good days and bad its one hell of a rollercoaster!
Walking (or should I say wheeled) into the neonatal ward for the first time was a daunting experience, I didn’t know what to expect. The ward was quiet, filled with tiny plastic incubators housing the tiny humans inside. Beeps from monitors were even unsettling (to start with you become fixated on the heart monitors watching every rise and fall and trying to work out what the symbols and numbers actually meant).
One of the first things your shown is how to wash your hands or as we used to call it “scrubbing in”, as a Grey’s Anatomy addict I feel I got the hang of it pretty quickly after watching Meredith and Co do it religiously before every surgery – I now had to do the same every time I entered the ward, after I changed a nappy, before feeding, if I touched anything outside that incubator there I was back at the sink up to my elbows in soap.
The first time I seen Sam in that incubator I remember feeling the urge to just pick up my tiny little man and never let him go, but at the same time being utterly terrified to stick my hand in just in case I hadn’t washed that tiny spec of dirt or bacteria off or I knocked off a lead/wire. As he was being monitored and had just been born we didn’t get any cuddles that day.
The first day was one of the hardest.
The second day I walked into a blue light glaring down at my tiny human (who was wearing an eye mask like you would on a sunbed). He was a bit jaundice so needed the light therapy (or his sunbed as it soon became known as) – so no cuddles again. That night thought they did turn off the light and take off his mask and for the first time we saw his little face properly – no CPAP and no eyemask. He was perfect.
On the third day, he had moved bays – cue a panic-stricken mama when I walked up to Sam’s usual bay to see an empty incubator!!!! Thankfully the nurses seen my face and quickly ushered us over to where he was then one of the best things ever happened – I finally got that cuddled I was craving!
Over the days we got into a routine while I was still in hospital, wake up – express milk – have breakfast – wait for Daryl – go over to neonatal for rounds – back to room to express – shower – lunch – visitors/neonatal – express milk – dinner- neonatal – express – say bye to Daryl ☹ – supper (cry while eating a loooot of chocolate) – express – sterilise everything – sleep and start it all over again!!
As Sam was born at 32 week he hasn’t developed his sucking reflex yet – so bottle or breastfeeding wasn’t possible therefore I expressed milk for him which he was fed through a nasal gastric tube (NG Tube for any of you Grey’s Anatomy fans) which was fed through his nose to his tummy. The neonatal nurses showed us how to feed him so we could start to get more involved in his care – we also became experts at changing nappies while he was in the incubator with minimal mess (except that one day we had a shit explosion which resulting in a whole new incubator…ooops).
We were also given a Cuski Miniboo*, during the day I would wear it (usually down my top) so it would smell like me – then at night when it was time to leave I would but it in the incubator with Sam to give him some comfort. I would usually swap his hat at this point and take with me the one he had been wearing – nothing can beat that baby smell!!
Then came the day I was discharged …..
The day I had been equally looking forward to and dreading all at the same time. At least I wouldn’t be alone at nights back home with Daryl but I was leaving my boy all alone in the hospital.
Leaving the hospital that night I cried the whole way home, not even the chocolate could stop me. One thing that made it a bit easier was that before we left we got told Sam was moving from the high dependency ward to special care! So the next morning when we arrived there he was in a small room (with 3 other babies) with his own dedicated neonatal nurse.
We had a lovely room and fabulous neo neighbours (stole your term Laura!) so it made the days a bit easier, having other parents to chat to and who understood what you were going through is a massive support.
But it was in special care we had our toughest day……
Sam had just been put up to 40ml feeds every 3 hours, we were so pleased he was doing so well…..but he started being sick. To start it was just little possets but as the day went on it got more and more. We would feed him (though his NG tube) and almost immediately the projectile vomiting would start. Watching your tiny little baby vomit up a whole feed while inside an incubator is heart-breaking, he would cry so loud but I wouldn’t be able to pick him up. I had to prop him up inside the incubator and just let him be sick. The worst point was just before visiting time, he had vomited so bad his full incubator needed changed – he was crying so loud. I was crying standing feeling helpless watching the nurses change the incubator as his cries got louder, then one nurse turned to look at me and said sit down mummy I know what you need. She scooped up my tiny screaming baby and wrapped him in a blanked and popped him into my arms – almost immediately he stopped crying and looked right at me, me the bubbling red eyed mess, me his mummy. All he needed was mummy cuddles. I sat like that, cuddling him, for about 2 hours. Leaving the hospital that night was horrible, what if he got upset during the night and I wasn’t there to cuddle him?? I called the hospital that night as I couldn’t sleep, I needed to know he was okay – and of course he was, sleeping away not a care in the world, taking his feeds like a champ! The next day we had one of our best days, the wee soldier was taking all his feeds, came out for a cuddle and even posed for a few photos. Just goes to show how much of a rollercoaster neonatal can be.
Something else you have to deal with when you have a baby in neonatal is guilt – a shitload of guilt. You feel guilty when you’re not up at the hospital first thing in the morning, guilty when you need to leave to eat, guilty when your leave early one night because your exhausted, guilty that someone else is sitting doing the night feeds when you’re at home in bed. No matter how much your told not to feel guilty you do – its human nature.
Battling with the guilt for the first 10 days or so we were up at that hospital all day everyday – until one day after some lunch I didn’t feel very well. Sitting sipping some water feeling shaky and drained, crying (yet again) we decided it would be best to go home and have a rest. Soon as we got home I crawled into bed and slept for a good 4 hours (possibly the best sleep I had since Sam was born). It was then we decided we couldn’t keep doing this, spending every hour possible at the hospital – as much as we wanted to – we needed to be strong and fit for Sam. So, we made sure to come home for dinner, or meet family for a coffee etc. taking time for ourselves so we were refreshed and ready to spend quality time with our boy.
Making this decision was hard but it did start to make things a bit easier.
Just before Christmas Sam was moved from his incubator to a hot cot – which is basically a regular hospital cot but with a heated mattress, this was to help Sam regulate his temperature and started taking a few bottle feeds.
Then a few days before new year I got the best phone call of my life………
I had just gotten out the shower and was hurrying trying to get dressed to get up to the hospital when my phone rang, scrambling about on the bed looking for it I noticed it said “Plastics Department Ayr Hospital” – that weird I thought, but answered it anyway. On the other end was a cheery voice “Hi Amy, its Sarah Jane here from neonatal, don’t panic its nothing bad – but we were wondering what you thought about some transitional care**” now here I didn’t quite understand what she said and I replied “yeah it sounds like a good thing” to which she laughed and said “I don’t think you understand, I mean would you like to come in for transitional care, we want to start to process of Sam coming home!”
From here it’s a bit of a blur of tears, shock, more tears, cuddles, phone calls and rushing to pack overnight bags.
The drive to the hospital that day felt longer than ever, but never have I been so excited!! We got to the neonatal ward where we were told we had to wait till a room became available then we would be transferred over to the transitional care ward. After what felt like forever (but was probably only an hour) in came the nurse with the paperwork to transfer us, our neo neighbours gave us a cheer as we “Graduated” from neonatal and where finally taking that first step towards going home.
Our Super Sam had done it again, after 16 days in neonatal we made our way to the ward where we had a private room and got settled. It was surreal being left alone with our baby for the first time – we just say in awe staring at him. I was still expressing so I was set up with another pump and bottles so I could feed. I was so excited finally getting the change to look after my baby like any other mum!
If we had known to ask beforehand Daryl could have stayed with us but we left it too late that night to organise a bed for him, but made arrangements to sort that for the next night. That night when Daryl left I didn’t cry, I was too happy at having my boy with me I was even wide awake for the night feeds – desperate to soak it all in.
Then the next morning after breakfast there was a knock at the door and in walked one of the doctors from the neonatal ward – he introduced himself and asked how we were, then he just blurted out “Well how would you like to go home?” “WHAT?! REALLY” I practically shouted back. He went on to explain that we had to wait for our prescription (vitamins) but we could leave as soon as we had them.
Cue me frantically trying to call Daryl – who didn’t answer the first time! But as soon as he picked up I said “Don’t bother bringing an overnight bag” he knew what I meant straight away and rushed up to the hospital to pick us up.
After waiting a while for our prescription, in came the midwife with our discharge papers. And that was us…time to finally go home as a family.
I was walking on air the whole way out of the hospital that day, with Daryl and our baby boy.
Home together at last.
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P.S I cant leave with out saying a huuuuuuuuge thank you to all the staff on the Wishaw General Neonatal ward, their care and support during those first few weeks really helped make leaving our little man that little bit easier.
*A massive shout out to Cuski for their miniboos what genius idea, we loved ours and were so lucky that our hospital provided it for us! Check them our here at: http://www.cuskishop.co.uk/miniboo–claires-nest-37-c.asp
** Transitonal care if your not aware is when your baby is almost ready to go home, you may be able to take over his care while he’s still in hospital. This is a kind of stepping stone between hospital and home. You stay overnight with your baby, with nurses or midwives nearby for help and advice if you need it. (definition from http://www.babycentre.co.uk/a555453/the-neonatal-unit#ixzz4dTbv7Hdv)