Hello Again B11 Cubicles!

After being discharge from hospital 2 months passed fairly uneventfully. We still struggled with Bethany's feeding, she would cry and choke on the milk, and we were always told she was fine and it was normal. We were once told she was a 'fussy' baby if you can believe it. Still we struggled on with the feeding and Bee struggled on with the weight gain. She cried most of the time and life got very stressful. By the time our second hospital stay rolled around in May Bee still only weighed 12lbs at 7 months old.

Bethany started with a cough, high temperature and vomiting which meant she was getting down very little food. For a baby of Bethany's weight that was worrying so I made an emergency appointment at the GP's surgery. I took her down and she was examined. After listening to her chest the Doctor made a few notes on the records in front of him. Out of concern of looking like a paranoid parent, which was how I'd so often been treated, I broke the silence with: "I just wanted to get her checked out, I was worried about the cough and her throwing up. She's so little to begin with. Last time this happened we spent a week in hospital". To my relief the Doctor replied: "that's where I'm sending you now." Bethany's chest had sounded 'crackly' and with the constant vomiting and her low weight it was his opinion that she should be admitted to the children's ward for possible Bronchiolitis. As worried as I was I was also really pleased that the Doctor had taken me seriously and we were being seen immediately. Luckily the hospital is only a 5 minute walk from my GP's surgery.

And so we were admitted back on to B11 Cubicles for the second time on Thursday 7th May 2009. For the first few days Bethany was extremely poorly. Her temperature was sky high and she couldn't keep any food down. She coughed so much and so severely that her throat was hoarse and when she cried hardly any sound came out. She needed quite a bit of oxygen during the course of the illness as her breathing was very laboured and she would desaturate, meaning the percentage of oxygen in her blood would drop. It was heartbreaking. A chest x-ray had confirmed bronchiolitis but unfortunately the only treatment was to wait it out. We fell back into the old routine. I would stay there 24/7, sleeping on a camp bed on the floor and Foz would visit in the evenings and on his days off. Thankfully the bronchiolitis eased after 4 days, although Bethany's cough remained. Unfortunately she lost a lot of weight, 8ozs in total, which is a lot for such a tiny baby. She went from 12lbs 4oz to 11lbs 8oz.

After 6 days we were transferred to a larger room with a cot for Bee and a bed for me! Joy! Normally Bee would probably have been allowed home once her bronchiolitis symptoms has eased. But with her weight loss and reluctance to feed normally again we had to stay. Of course being in-patients had it benefits: we were seen every day by a Doctor, sometimes more than one. Bethany had more blood tests and examinations, trying to diagnose a cause for her failure to thrive. Bethany has also always had a rattle when she breathes. It sounds like she needs a really good cough and it's been there since she was born. One doctor once told us that it was milk in her throat. What 24 hours a day, 7 days a week?? I don't think so. After complaining to the umpteenth doctor about Bethany's difficulties with feeding and her rattle one finally suggested that Bee be checked out by ENT, or the Ears, Nose and Throat department. Hooray! Progress! Someone who listens!

So I wrapped Bethany in a blanket, the Children's Ward is always stifling but the corridors off the ward are cold, and headed off to the ENT department. We were accompanied by a nurse, as if I couldn't be trust not to run away with her. She dropped us in the waiting room, informed the receptionist that we were there and told me she'd be back to collect us. I tried to reassure her I was very familiar with the hospital by that point and the hospital wasn't that big to begin with but she insisted. So there we sat, waiting, amongst the eldery men and women. Eventually Bethany's name was called and we followed the nurse into the room. This was mine and Bethany's first experience of a throat examination and I was quite prepared for how unpleasant it would be. I had to sit Bee on my knee, facing me, then lie her down so her head was resting upside down on the Doctor's knee. He then used a large wooden stick, like a giant lollipop stick, to push down Bethany's tongue and see right down her throat. My poor girl gagged and retched and I honestly thought she was going to throw up but she was a trooper and persevered. It only took 20 seconds and it was all over. I lifted her up and she sat on my knee, blinking and taking us all in. I murmured some reassuring words to her and she gave me a big smile. That's my girl. I turned to the Doctor for the verdict and it was here we got our first clue on the way to getting Bethany's final diagnosis. Our little Bee has a bifid uvula. My first reaction was probably pretty much what yours is: "A what??". Well, according to Wikipedia a uvula is "a conic projection from the posterior edge of the middle of the soft palate." In laymans terms it's a piece of tissue that hangs down like the tonsils. Bifid means split. So a bifid uvula means it is split. I asked about the ramifications of that and was told that although it can cause trouble swallowing, it's not a huge problem in and of itself and many people live with them with no effects whatsoever. He referred us to the ENT department at Alder Hey Children's Hospital with the recommendation Bethany have an endoscopy (camera) down her throat. Of course it's never pleasing that a Doctor does find a problem with your child but if there is something to be found we are always relieved when a Doctor does finally find it. We were pleased with the Alder Hey referral. They have a great reputation and are the nearest children's hospital to our home. It is also a regional centre for so many specialist units we knew we'd be in safe hands.

As a result of the ENT diagnosis and because of Bethany's feeding difficulty we also had a Speech and Language Therapist come and see us. We were pretty confused when we were told this as Bethany wasn't yet old enough to be speaking and she'd only just started baby babbling. When Claire the Speech Therapist arrived we felt immediately at ease with her. She was one of the nicest and approachable health professionals we'd met with so far and explained everything very clearly, instead of just assuming we understood the long medical terms. She explained that a speech therapist didn't just do the obvious of encouraging and developing speech. It was her job to look at the function of the mouth and throat, see how the mechanics were working and if there were any problems. We'd had to starve Bethany before the appointment to make sure she would eat while Claire was examining her. Consequently she was irritable and moaning so we started with the examination pretty quickly. Whilst Bethany had some solid food and then her bottle Claire listened to her neck with a stethoscope. She let Bethany finish eating then had a quick examination of her throat as the ENT Doctor had done, I then settled her in the cot with some toys so we could have a chat. She asked me lots of questions about Bethany's feeding, breathing and general health and finally gave me the verdict. Claire confirmed what the ENT Doctor had told us about the bifid uvula and gave us some rather bigger news. She suspected Bethany had a sub-mucous cleft of the soft palate. A cleft palate?? But she was fine, there was no split in her lip or the roof of her mouth. How could she have a cleft palate? I just didn't understand. Claire explained that the mucousal layer is the layer of skin and tissue that forms the roof of your mouth and cleft means split. So basically the sub (underneath) of Bethany's mucousal layer is split. That's why we couldn't see a split, it's underneath the roof of the mouth. The physical evidence was a high arch and a faint silver line running down the center of her roof. What this means is the muscles haven't come together and fused after the tongue descended during development. When a regular person swallows those muscles lift up the soft palate at the back of the mouth, to close off the passageway to the nose. As this hasn't happened in Bee's mouth it means when she swallows she gets fluid coming back up into her nose. This means effectively she has to swallow twice for each mouthful of food, doing twice the work, and she's got a constant amount of liquid sitting in the back of her nose, making her rattle as it doesn't drain properly. The second major effect that a sub-mucous cleft can have is difficulty sucking. To get a decent suck a baby needs to create a vacuum with it's mouth. If the soft palate isn't closing off the nose passage then air can still circulate and sucking becomes difficult. Suddenly all those hours struggling to breastfeed popped into my head and things started falling into place. Of course the little we knew about cleft palates involved surgery, speech therapy and all kinds of drastic procedures. Claire reassured us that in a lot of instances no surgery was required. As long as special bottles were used and weaning encouraged Bethany shouldn't have a problem. Usually surgery was only performed if the child developed nasal-sounding speech as they got older. That was reassuring. Bethany just seemed to tiny to go through surgery and it was the last thing we wanted to put her through. Claire gave us some special squeezy bottles so Bethany wouldn't have to struggle sucking, we could help push the milk into her mouth and promised to inform Alder Hey Cleft Palate department, who would send a specialist nurse to come and see us.

Trish, the Cleft Palate Nurse Specialist, came the following day. She confirmed everything Claire had told us and referred us on to the Cleft Palate Surgeon, Mr. Van Eden for a surgical consultation. Trish expressed concern during her examination of Bethany that her fontanelle (soft spot on her skull) appeared to have closed. We already knew Bee's was small but it having closed so early in life was a cause for concern. Trish explained that normally, as babies brains grow their skulls grow with it, closing the gap between the skull plates, known as the fontanelle. As Bethany's has closed so early their was concern that whilst her brain would continue to grow, the skull would not be able to accommodate the growth. This would result in the skull essentially squashing the growing brain and causing inter-cranial pressure leading to brain damage and an abnormally shaped skull. The correct term for this is Craniosynostosis. She told us she'd put a referral through to the Cranio-Facial Unit at Alder Hey and they would contact us in due course. Of course when she left I panicked. I imagined every minute going by was causing more and more brain damage to my beautiful little girl. As you can imagine we were completely freaked.

Bethany was finally discharged, after gaining 6 of the 8ozs she'd lost, on the 13th day. It was the day before my 26th birthday and the best present I could have hoped for, as cliched as that is. This time round we felt like we'd made progress. We had an answer as to why Bethany struggled to feed and I had the comfort of knowing the difficulty with breastfeeding wasn't my fault. But the up-shot of all this was it becoming increasingly obvious the Geneticists had something to find when they started testing. Now not only did Bethany have failure to thrive, developmental delay and hypotonia, she also had a cleft palate and bifid uvula to contend with as well as possible craniosynostosis. Trish actually asked us if we'd be surprised by a genetic diagnosis of something and we told her we wouldn't be. Her reaction was "if I'm brutally honest I wouldn't be surprised either". That just said it all.

We again couldn't have got through this period without the support of some very wonderful people: my Mum and Ken, Foz's parents and our good friends Lynne and Mike, even when it was just a pint of milk for a cuppa in the parent's room! :)

Our First Hospital Stay

Life at home was bliss. Well, as bliss as it ever is for first time parents. there was lots of crying through the night and getting to know each other. After returning home on that first day it wasn't long before Bethany went to bed. Of course, she wasn't asleep for long: hunger soon woke her up.

We soon fell into a routine. As Foz would be up for work in the mornings I always had Bethany through the night. I would get up with her, feed her and put her to bed, then express and go to bed myself. It was exhausting. I'd just be falling back into a decent sleep after expressing when Bethany would be awake again, wanting more milk. Still, I just felt grateful to have her home. Foz would have her Tuesday and Saturday nights as he was off work the next day and it gave me a break. But of course that meant he never got a lie-in so he was exhausted too.

As a premature baby Bethany has always been on the small side and we'd trained ourselves into repeating the mantra: "she'll catch up, she'll catch up". Still, on one of the health visitor's first visits, we were told Bethany was not gaining weight quick enough and it was a cause for concern. I was very upset. Not so much at Bethany not growing quickly, we'd come to accept that this might happen as she was a prem baby, but at the HV's insinuation that it was something we were doing or not doing to cause this. She again pushed me to try breastfeeding, as if I hadn't been upsetting and stressing myself trying over and over. Bethany would just not latch on, much less attempt to take milk. Why on earth did she think I was driving myself to exhaustion expressing every 3 hours day and night? because I know that breast milk is the goods and Bethany deserved the best I could do for her. I explained that every time we tried to feed Bethany she would cough and choke then cry. That she didn't really have an interest in milk and we struggled to get much in her. She told us to raise the concerns about her weight with the Paediatrician at the following appointment I duly raised the HV's concerns and the Paediatrician agreed her weight gain was slow. He had a good examination of her, asked me all kinds of questions about feeding and sleeping habits, her mood and such at Bethany and the gently told me that Bethany had certain 'dysmorphic features'. Ok, no cause for alarm. We'd been told In Scoo Boo that Bethany had certain features which may be indicative of a genetic disorder of some kind. She'd been tested for Turner's Syndrome but it had come back negative. Since that we'd pushed it to the back of our minds. There's was nothing wrong with our perfect girl. Unfortunately now, the 'features' coupled with other factors: her failure to thrive and increasingly obviously floppiness, was pointing more and more to their being something wrong. The doctor asked if it was ok to refer Bethany to the Clinical Geneticists team at Alder Hey Children's Hospital. I told him it was. Ignorance is not bliss. In terms of her feeding it was suggested that maybe Bethany was just a fussy baby and it was best to just persevere. She was also diagnosed with Hypotonia, meaning low muscle tone, also known as floppy baby syndrome.

By Bethany's 6-8 weeks check she passed all the goals apart from smiling, we were yet to see Bethany's first smile. We'd had a few twitches but were never sure if they were just very cute 'wind smiles'. A further appointment was made for Bethany's 13th week just to check that she had started to smile.

As Bethany grew and progressed the differences between her and other babies became more apparent. Bethany finally smiled at 12 weeks old although where other babies could hold their heads up, play happily on their tummies and reach for toys, Bethany could do none of those things. She still lay on her back, as immobile and weak as a newborn.

Bethany's first trip to A&E was on Friday 13th March, when she was 5 months old, after she had been off her feeds for a couple of days and we were worried. As she was only 9lb 14oz in the first place we couldn't afford for her to not be eating properly. She was weighed in A&E at 9lb 13oz and admitted with a view to possibly putting a feeding (or NG) tube in her nose. After two nights in the most uncomfortable chair I've ever had the misfortune of sitting in my Mum and Ken stepped in and bought us an airbed. No more nights in a chair!

Due to Bee's low weight we were admitted and her feeds were monitored for a couple of days. She also had a lot of blood taken for various tests to try and diagnose why she's 'failing to thrive'. After another weigh-in at 9lbs 6oz she was given the NG tube before she went to bed on the 3rd day, it's not normal for babies to lose weight and is especially worrying for babies as small as Bethany. After a feed through the tube she threw up twice and it was removed. She did better after that and started taking more milk each time. She managed to get back up to 9lbs 9oz, although was still very skinny. You could feel her ribs and spine.

During that stay in March she was diagnosed with a small fontanel (or soft spot) on her skull. We didn't know what, if any, impact that would have or really what it meant in terms of her health, the doctors were vague.

After a few more days of monitoring and after liaising with the hospital's Dietician Bethany was put on something called Infatrini. That is a high protein and calorie milk and to add to the milk, Duocal, a high-calorie powder.

Her blood tests all came back negative (or perfectly normal), which was great, but left us no closer as to what the problems were. She's was tested for basic functions like liver/kidney etc and some infections but all were ruled out. While we were still waiting to see Alder Hey for the genetic, doctors at Warrington General were working on finding or ruling out a clinical cause.

We were eventually discharge after 6 days feeling like we'd made no progress. Of course this wasn't entirely true, we'd managed to rule out some things, which was helpful. So March 2009 was our first taste of hospital life (not including Scoo Boo of course), something which we'd become accustomed to.

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...