Tuesday 4 August 2009

Scoo Boo

Bethany's life started in the Special Care Baby Unit (SCBU) or Neonatal Unit, known affection to those who work or frequent there - Scoo Boo. Warrington Hospital's unit has two rooms, the high dependency room and, as one of the nurses put it to me, the 'nearly-going-home' room. Access is buzzer-only and there is a lovely parent's room just down the corridor with a TV, sofa and small kitchen.

Bee's first few days were spent in the high dependency room. Although I'd been wheeled there straight from theatre after having Bethany I had been high as a kite so my memories were very hazy. I was completely unprepared for walking in there, lucid and aware, for the first time. I rang the buzzer at the entrance to the unit and a nurse came to escort me inside. The room was so hushed it felt almost like a sacred place with only the quiet voices of nurses and parents and the beeping of monitors to break the silence. I was almost afraid to speak. Many of the babies in high dependency were in incubators, some with strong UV lights shining over them for the jaundice or quilted covers hiding them. The constant beep of monitors was like a weird melody broken occasionally by a loud alarm, indicating that a baby's heart or oxygen rate had dropped below acceptable and a nurse would hurry over. I was shocked to see just how tiny the babies occupying the incubators were. How could anything so small have so much perseverance and fight? But my biggest shock was approaching the small crib that held my beautiful daughter. She was so swollen and red, with tubes and wires seemingly everywhere. A monitor next to her showed her heart and oxygen rate and she has a little name tag attached to the head of the crib. Bethany's named nurse explained to me what everything was for and how she'd been through the night. It was all so much, I felt so overwhelmed.

Our first problem was with Bethany's oxygen level, it would drop every time she cried or tried to feed. These episodes, called desaturations, were very scary and we were concerned she would have to go into an incubator. She required an oxygen mask applied to her face when this would happen to bring her level back up. Her second problem was feeding. Bethany just wouldn't suck, she seemed to have no instinct for it. I had desperately wanted to breast feed but it just wasn't happening so Bee had a nasal gastric tube (known as an NG) to feed milk directly into her tummy and would take tiny amounts from a bottle. The nurses told us that this was normal for a premature baby. Bethany spent the first few days on a warming mattress in her crib as she was struggling to maintain her body temperature, something which is also normal for premature babies. She had an excess of red blood cells, making her appear very red and was jaundice underneath the red. She was also swollen, I think from the pressure of all my excess water.

Bethany was taken off the warming mattress after a couple of days - her first victory and stopped needing oxygen at 5 days old - her second. She still had the oxygen desaturations but had begun to self-correct so the doctors were no longer concerned. It still bothered us that her oxygen level dropped at all but we were assured time and time again that it's normal to drop a little during sleep. With those milestones behind us it was just a matter of establishing her feeding.

Of course every day, time and time again I was making the trip between the post-natal ward and Scoo Boo. Shuffling along the corridor in my pyjamas, trying not to jiggle my staples I must have looked a right sight! I would sit with Bethany as long as possible, tending to her cares like feeding and nappies then shuffle back down to the ward for meal times. Of course in the end I was doing too much and my legs and feet swelled so badly I thought my feet would explode every time I took a step, I couldn't even get my slippers on so I ended up wandering back and forth in my bare feet. The nurses told me off but I couldn't bear the thought of my baby crying and me not being there to comfort her. I just wanted to be able to what every other mum could. I would lie awake back on the ward, listening to other babies crying and their mums getting up to care for them, then complaining to the nurses that they were tired and wanted the baby to stop. I felt like screaming at them. They had no idea how lucky they were to have their baby at the end of the bed. The crib at the end of my bed was empty. A cruel reminder of our situation and my poorly little baby. I sobbed so hard I thought my heart would break in those first few nights, it was like torture. As I'd had a C-Section I had to remain in the hospital for three days for recuperation. On the third day the doctor came on the morning rounds and declared me fit for home, the words I'd been dreading. I asked a nurse if that meant I had to go home, as I didn't want to leave without my baby. She told me there was no rush as they did not need the bed immediately, but I couldn't remain too much longer as they would eventually need the bed for another patient. I told her I would see how Bethany was the next morning and re-evaluate. That evening I came back down to the ward from feeding and caring for Bethany and was feeling particularly emotional. I'd hit the 3-day 'baby blues' and had realised there was no chance of Bethany coming home in the next few days so I would have to face the prospect of going home without her. The nurse just arriving on the night shift caught me crying and sat down on my bed for a chat. I'd not complained to anyone up to that point. Tried to be stoic and strong for my baby and my partner, except for my late-night weeping sessions, but this nurse just caught me at a low point and I couldn't help myself: I just poured my heart out to her. I cried about Bethany, about being away from her, about feeling jealous of all the other mums, about being so tired from caring for Bee as much as possible and expressing every 3 hours, about my sore boobs from the pump, about missing my partner... the list just went on. She was very nice and comforting but in truth she couldn't really help. The following morning I headed to the loo, situated just by the nurses station, while all the nursing staff were in handover. I could hear my nurse, the one who had so kindly comforted me the previous evening, doing an impression of somebody crying. I realised it was me. She was making light of my emotional outburst the night before for the amusement of the other nurses. I was mortified and devastated. I ducked in to the toilet before she could spot me and ended up hiding there, crying, until the handover had finished and the night staff gone. It was at that point I decided that, despite how I felt about leaving Bee, I would have to face up to it and go home. She was not going to be home for a while and I couldn't stay on the post-natal ward any longer. Unfortunately, as Bee was so premature myself and Foz were completely unprepared at home so he'd been spending days at home trying to get the house in order, ready for bringing Bee home. Thankfully my wonderful Mum offered for me to stay for a few days and pamper me until the house was ready. I was so grateful, it meant delaying the inevitable: stepping back in my house without my baby.

Still, leaving the hospital on the 4th day I was a mess. It felt a little like I was abandoning my baby. I spent the whole time worrying that she would be awake and crying and I wouldn't be there. Or something would happen and the doctors couldn't get in touch with me. For the few days I spent at my Mum's I still went to the hospital and spent all day and evening there, went back to my Mum's for sleep and would get up to express during the night. I needed to keep my supply going as I wanted Bee to be on breast milk. After a few days I couldn't delay the inevitable any longer: I had to go home. Walking through the front door of my house without Bethany was one of the hardest things I've ever done. I went straight up the stairs to her room, which had been decorated in my absence by Foz and a friend of ours Frilly, sat down and cried and cried.

The next 10 days or so were a blur of hospital visits and snatched meals and naps. As we don't drive our wonderful parents got together and devised a rota for ferrying us back and forth to the hospital. Luckily none of us live that far apart and the hospital is only a ten minute drive from our house. We fell into a routine of being up early for Bethany's first feed of the morning, usually around 7/8am. We'd take a picnic and stay for the day, doing her next two feeds as well. Then we'd be picked up and taken home for tea and a rest while the nurses did that feed, then we'd return for the feed in the evening and spend some time with Bee, returning home around midnight-ish to get some sleep ready for the next day. I would still get up to express and it was exhausting but this routine allowed us to spend as much time as possible with Bee without running ourselves into the ground, we'd be no good to her then. We couldn't have done it without those that helped us: my Mum, Julie and her husband Ken, Foz's parents Cheryl and Barry and a close family friend of mine, Stu. They all did so much for us, helping to take care of the practical things so our focus could be singularly on Bethany.

I remember walking in to the unit on about the 5th day and heading into the high dependency room to Bethany's crib. It was not there. What??? Where the hell was she??? Where was my baby??? Panic was setting in and the worst was running through my mind when a nurse must have recognised my horrified expression and told me Bethany had been moved next door. Moved? I hurried next door and there she was, sleeping peacefully in her crib. The tight band that had been restricting my chest loosened and tears started to well in my eyes. She was ok. Nothing the matter. What a shock that had been! The nurse explained that Bethany being moved was positive, she was now in the 'nearly-going-home' room as she didn't need specialised care anymore. We were thrilled.

After 10 days or so in Scoo Boo we were starting to get frustrated. Bethany had been born at a good weight for 6 weeks early: 6lbs 8oz and so her milk requirement was higher than she was capable of taking. Yet the more she put on weight the more she had to be given and it just seemed to be a vicious cycle. One of Bee's regular nurses agreed that maybe it was time to take the plunge and give Bee a chance to function on her own without the back-up of the NG tube and so it was taken out - another victory for our baby. She was even given the chance to demand feed, something she hadn't been able to do until that point as she'd been fed so often there was not the opportunity for her to feel hungry. To our immense pride Bee held her own. Not only did she demand food pretty much on the dot every 3 hours, she even took the amounts the nurses required, there or there abouts. Our clever little girl. We were thrilled. The feeding had been the only thing really keeping Bethany in Scoo Boo and with that mountain conquered there should be no reason we couldn't take her home. Bee had to prove she could keep the feeding pattern going over a couple of days. She did just that and on Friday 17th October 2008, we finally packed up Bethany's things, dressed her in her little warm coat (a present from NannyGranny Jan) and strapped her in her car seat for the first time. My Mum and Ken had come to pick us up and were waiting outside the doors, almost as excited as we were! Saying goodbye was a bittersweet occasion, as pleased as we were to be going home we would be sad to say goodbye to the nurses and some of the parents we'd come to know. A regular nurse of Bee's accompanied us down to the car and I fastened her in, saying our final goodbyes.

The drive home was exciting yet surreal. I kept looking at this tiny little baby in the car seat next to me and feeling a mixture of giddiness and apprehension. How on earth would we cope with this little baby now? We were so used to having a nurse there 24/7 to answer our questions it was quite daunting to think we were going to be on our own. Yet I couldn't wait to put Bee in her little crib we had all set up in our bedroom, couldn't wait to take her out in her pram for the first time and have her wake us in the night for the first time. My Mum and Ken didn't stay, just dropped us off and retreated, they didn't want to intrude on our special moment. Bringing Bethany home was one of the most wonderful days of my life. Finally my family was all together, the real adventure was about to begin...

1 comment:

Debra Clementson-Smith said...

What a very moving story of your lives so far..i was wiping away the tears all the way through. You really do express your feelings v.well in the written word Cath & am sure that it helps you to cope with your complete array of emotions. It is good to know that you have such a huge supportive network around you & also that ex-work collegues think of you all so very often and have strong supportive feelings for you, foz & bethany. All i can say from hereon is that you are all very strong & little bethany will not let her condition hinder her in anyway as she touches peoples hearts along her life's journey.
Our families love goes out to yours & if i can support you all in any way possible...please!..do NOT hesitate to contact me at any time. Thinking of you all. Lots of love Debra, Ray, Harry & Luke - xxxx -