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.