Well where to begin?
I've started this blog as a celebration of our daughter's life, to inform and educate others about Kabuki Syndrome and as a means of release, somewhere to expound all the thoughts and feelings that go with having a special needs child.
The saying goes that the best way to start a story is at the beginning (although I've read many a great novel that start at the end!) so that's where I'll begin.
My name is Cath and I live with my partner Darren, more affectionately known as Foz. We are both homebodies and geeks at heart, enjoying films, games and reading. Our big passion is the local Rugby League team, the Warrington Wolves, a team never at the bottom but never good enough for the top. Still we persevere, it's difficult not to when you've been brought up with something. We bought a house in September 2007 and set about making it our own. Although both family-orientated it was not our intention to have children, at least not so soon. My pregnancy came as a complete shock. "Oh. My. God" I panicked. How on earth were we going to manage a child? Much of the time I still feel like an 18-year-old university student myself, how was I going to take on the responsibility of another life? Not only that, how could we afford it? Babies are expensive and we don't have the highest paid jobs in the world. The list of fears and worries just went on and on, round and round. When the dust from that first week of discovery had cleared and we were still standing, we set about preparing ourselves for the new arrival. Ready or not this baby was coming in approximately 8 months and we'd better get our backsides in gear!
We refused to buy anything or tell anyone beyond our immediate family before the 12-week dating scan. Superstitious maybe but we didn't see the point in tempting fate. So many pregnancies can end in miscarriage I knew I would be devastated if that happened to us. The thought of having to tell the world that we'd lost the baby we'd so recently been celebrating was just unbearable. To add to the stress were my terrible nightmares in the weeks leading up to that scan. I'd dream the nurse telling me there's no baby or the baby had died or some other terrible outcome. By the time the day of the scan rolled round I'd worked myself into such a state I actually half believed there was going to be something wrong. On the morning I dutifully drank my 2 pints of water and proceeded to walk to the hospital with my legs crossed. Not an easy task I can tell you. Our first scan was amazing. There really are no words to describe it. People will tell you that seeing their baby on that monitor for the first time is when it really hits you that there is a little life growing inside you. And believe me, that's true. I couldn't quite believe that tiny, wriggling form on the screen was actually a little baby growing in my tummy. The scan dated the baby due on 4th November 2008, which we were very excited about. We'd got engaged on Bonfire Night 2007 so a baby born on November 5th would have been lovely. We got a fantastic scan picture that looked like the baby was sucking its thumb and waving its legs in the air, we were thrilled. I couldn't wait to tell everyone and show them our precious tiny baby.
Fairly early on Foz's sister had nicknamed the baby 'Beanie', as babies tend to look like little kidney beans when first conceived and the moniker stuck.
It was with slightly less apprehension that we attended the second scan. The dreams had died down although I still had some real corkers and as we'd already seen Beanie once, we were feeling more positive about everything being ok. We'd decided fairly early on that we wanted to know the sex of the baby. Calling our baby 'it' for the duration of the pregnancy didn't quite sit right with me, I really wanted to feel like I was bonding with my baby and the person she was growing into and I didn't feel I could do that without knowing what baby I was actually having. Financially we also decided it was more practical to know the sex as we could better prepare beforehand and not have extra things to buy once the baby had been born. An hour before the scan I drank my pint of water, silently thankful it wasn't 2 pints again. Unfortunately for me (and all the other pregnant women) a member of staff was off sick and all the appointments were running behind. By the time we were seen an hour and a half after the appointment time I needed the toilet so badly I could hardly stand and had a piercing pain in my side. I hobbled to the examination room and lay down on the bed. As the nurse began to scan she discovered my bladder was too full and I had to go and let some out! I couldn't believe it! I warned her that if I started I might not stop but she told me it'd be ok. Finally, after so much waiting and suspense, we found out the sex of our baby - a little girl. We were so thrilled! Of course we'd have been thrilled either way
I became very uncomfortable as my bump grew so large that I couldn't sleep or sit without being in discomfort. At 26 weeks I was the size of a 30+ week woman. Because of my size I was checked out and diagnosed with polyhydramnois, an excess of amniotic fluid. This can be caused by a variety of reasons, the main ones being gestational diabetes and the baby having throat or stomach problems and not swallowing the fluid like she should. I had a negative test for diabetes and had regular scans to ensure the baby's body was functioning properly. All came back positive and by the end of my pregnancy the doctors were still none the wiser as to what had caused the condition in me. One of the side effects of polyhydramnois is a very tight, hard bump so with being so huge you can imagine how difficult movement, sleep and general living was. I was so uncomfortable and miserable. On top of it all I hardly felt Beanie moving as she was kicking into a great mass of fluid which cushioned me from feeling her, that was hugely disappointing. When all the pregnancy books and magazines were talking about feeling certain body parts sticking out and feeling your baby turning I was lucky to feel slight flutterings. This had an effect on my partner as not being able to feel Beanie move meant not feeling as close and bonded with her as he would have liked. During pregnancy I also discovered my blood is rhesus negative, a fairly rare blood type. There was a high chance that Beanie's blood would not be the same type and so, to stop my body from rejecting hers, I was given an injection of Anti-D immunoglobulin with another to follow immediately after the birth.
I finished work at 33 weeks, exhausted and looking forward to the rest. I had swelled from retained water everywhere and that, along with my immense size and tautness of bump meant I was so heavy and uncomfortable I was just grateful not to have to wear a restrictive uniform and walk to and from work every day. A week later was my 34-week check. Due to work my partner couldn't make it so my mum attended with me. The polyhydramnois meant I needed extra scans through pregnancy to keep an eye of the baby. I'm told that pools 9-10cm deep were big, this latest one had me measured at 14cms of pooled water around the baby. The consultant took one look at me and insisted I was too big to struggle along and the stress on both the baby and my body was not good for us. He wanted to admit me overnight for some monitoring and steroid injections to mature the baby's lungs, then bring me back a week later to be induced. I was terrified but outwardly calmer than I would have expected to be. My mum on the other hand burst into tears! I'd brought her along to support me and now it was me doing the supporting! When I told her not to worry and they were doing it for the best she told me that she was just worried because I am her baby. Parents never lose that feeling. Thinking of the practicalities I realised I hadn't even packed my hospital bag yet, I was certainly not prepared for all this to be dropped on us so suddenly. The doctor allowed me to go home to pack an overnight bag and I had to report to the prenatal ward that afternoon. That day was a Thursday. I seemed to spend the next 3 days sitting on a foetal heart monitor, occasionally having to get up and walk around to encourage Beanie to move. Much of it was a guessing game. My bump meant that the nurses could not feel Beanie to know where to place the heart monitor so I spent a lot of time being ferociously poked and prodded while they tried to locate where she was lying and which way round. Over the course of Friday and Saturday they observed that Beanie's heart rate was constantly accelerated above what they would consider a normal rate or tachycardia in medical terms. By Sunday morning her heart rate had not decreased and there was concern that her heart wouldn't last through to 35 weeks at the accelerated pace. The consultant described it as feeling like you're constantly running a marathon, that racing heart feeling. Unfortunately it was my condition, the pressure of all that fluid around her that was causing her heart to race and because my condition was not going to change it was unlikely that Beanie's heart rate would slow down. I was conveyed straight up to the delivery suite and advised to ring Foz as, unless Beanie's heart miraculously slowed down over the next couple of hours, whether we were prepared or not, they were getting her out that day.
I. Was. Terrified.
I've started this blog as a celebration of our daughter's life, to inform and educate others about Kabuki Syndrome and as a means of release, somewhere to expound all the thoughts and feelings that go with having a special needs child.
The saying goes that the best way to start a story is at the beginning (although I've read many a great novel that start at the end!) so that's where I'll begin.
My name is Cath and I live with my partner Darren, more affectionately known as Foz. We are both homebodies and geeks at heart, enjoying films, games and reading. Our big passion is the local Rugby League team, the Warrington Wolves, a team never at the bottom but never good enough for the top. Still we persevere, it's difficult not to when you've been brought up with something. We bought a house in September 2007 and set about making it our own. Although both family-orientated it was not our intention to have children, at least not so soon. My pregnancy came as a complete shock. "Oh. My. God" I panicked. How on earth were we going to manage a child? Much of the time I still feel like an 18-year-old university student myself, how was I going to take on the responsibility of another life? Not only that, how could we afford it? Babies are expensive and we don't have the highest paid jobs in the world. The list of fears and worries just went on and on, round and round. When the dust from that first week of discovery had cleared and we were still standing, we set about preparing ourselves for the new arrival. Ready or not this baby was coming in approximately 8 months and we'd better get our backsides in gear!
We refused to buy anything or tell anyone beyond our immediate family before the 12-week dating scan. Superstitious maybe but we didn't see the point in tempting fate. So many pregnancies can end in miscarriage I knew I would be devastated if that happened to us. The thought of having to tell the world that we'd lost the baby we'd so recently been celebrating was just unbearable. To add to the stress were my terrible nightmares in the weeks leading up to that scan. I'd dream the nurse telling me there's no baby or the baby had died or some other terrible outcome. By the time the day of the scan rolled round I'd worked myself into such a state I actually half believed there was going to be something wrong. On the morning I dutifully drank my 2 pints of water and proceeded to walk to the hospital with my legs crossed. Not an easy task I can tell you. Our first scan was amazing. There really are no words to describe it. People will tell you that seeing their baby on that monitor for the first time is when it really hits you that there is a little life growing inside you. And believe me, that's true. I couldn't quite believe that tiny, wriggling form on the screen was actually a little baby growing in my tummy. The scan dated the baby due on 4th November 2008, which we were very excited about. We'd got engaged on Bonfire Night 2007 so a baby born on November 5th would have been lovely. We got a fantastic scan picture that looked like the baby was sucking its thumb and waving its legs in the air, we were thrilled. I couldn't wait to tell everyone and show them our precious tiny baby.
Fairly early on Foz's sister had nicknamed the baby 'Beanie', as babies tend to look like little kidney beans when first conceived and the moniker stuck.
It was with slightly less apprehension that we attended the second scan. The dreams had died down although I still had some real corkers and as we'd already seen Beanie once, we were feeling more positive about everything being ok. We'd decided fairly early on that we wanted to know the sex of the baby. Calling our baby 'it' for the duration of the pregnancy didn't quite sit right with me, I really wanted to feel like I was bonding with my baby and the person she was growing into and I didn't feel I could do that without knowing what baby I was actually having. Financially we also decided it was more practical to know the sex as we could better prepare beforehand and not have extra things to buy once the baby had been born. An hour before the scan I drank my pint of water, silently thankful it wasn't 2 pints again. Unfortunately for me (and all the other pregnant women) a member of staff was off sick and all the appointments were running behind. By the time we were seen an hour and a half after the appointment time I needed the toilet so badly I could hardly stand and had a piercing pain in my side. I hobbled to the examination room and lay down on the bed. As the nurse began to scan she discovered my bladder was too full and I had to go and let some out! I couldn't believe it! I warned her that if I started I might not stop but she told me it'd be ok. Finally, after so much waiting and suspense, we found out the sex of our baby - a little girl. We were so thrilled! Of course we'd have been thrilled either way
I became very uncomfortable as my bump grew so large that I couldn't sleep or sit without being in discomfort. At 26 weeks I was the size of a 30+ week woman. Because of my size I was checked out and diagnosed with polyhydramnois, an excess of amniotic fluid. This can be caused by a variety of reasons, the main ones being gestational diabetes and the baby having throat or stomach problems and not swallowing the fluid like she should. I had a negative test for diabetes and had regular scans to ensure the baby's body was functioning properly. All came back positive and by the end of my pregnancy the doctors were still none the wiser as to what had caused the condition in me. One of the side effects of polyhydramnois is a very tight, hard bump so with being so huge you can imagine how difficult movement, sleep and general living was. I was so uncomfortable and miserable. On top of it all I hardly felt Beanie moving as she was kicking into a great mass of fluid which cushioned me from feeling her, that was hugely disappointing. When all the pregnancy books and magazines were talking about feeling certain body parts sticking out and feeling your baby turning I was lucky to feel slight flutterings. This had an effect on my partner as not being able to feel Beanie move meant not feeling as close and bonded with her as he would have liked. During pregnancy I also discovered my blood is rhesus negative, a fairly rare blood type. There was a high chance that Beanie's blood would not be the same type and so, to stop my body from rejecting hers, I was given an injection of Anti-D immunoglobulin with another to follow immediately after the birth.
I finished work at 33 weeks, exhausted and looking forward to the rest. I had swelled from retained water everywhere and that, along with my immense size and tautness of bump meant I was so heavy and uncomfortable I was just grateful not to have to wear a restrictive uniform and walk to and from work every day. A week later was my 34-week check. Due to work my partner couldn't make it so my mum attended with me. The polyhydramnois meant I needed extra scans through pregnancy to keep an eye of the baby. I'm told that pools 9-10cm deep were big, this latest one had me measured at 14cms of pooled water around the baby. The consultant took one look at me and insisted I was too big to struggle along and the stress on both the baby and my body was not good for us. He wanted to admit me overnight for some monitoring and steroid injections to mature the baby's lungs, then bring me back a week later to be induced. I was terrified but outwardly calmer than I would have expected to be. My mum on the other hand burst into tears! I'd brought her along to support me and now it was me doing the supporting! When I told her not to worry and they were doing it for the best she told me that she was just worried because I am her baby. Parents never lose that feeling. Thinking of the practicalities I realised I hadn't even packed my hospital bag yet, I was certainly not prepared for all this to be dropped on us so suddenly. The doctor allowed me to go home to pack an overnight bag and I had to report to the prenatal ward that afternoon. That day was a Thursday. I seemed to spend the next 3 days sitting on a foetal heart monitor, occasionally having to get up and walk around to encourage Beanie to move. Much of it was a guessing game. My bump meant that the nurses could not feel Beanie to know where to place the heart monitor so I spent a lot of time being ferociously poked and prodded while they tried to locate where she was lying and which way round. Over the course of Friday and Saturday they observed that Beanie's heart rate was constantly accelerated above what they would consider a normal rate or tachycardia in medical terms. By Sunday morning her heart rate had not decreased and there was concern that her heart wouldn't last through to 35 weeks at the accelerated pace. The consultant described it as feeling like you're constantly running a marathon, that racing heart feeling. Unfortunately it was my condition, the pressure of all that fluid around her that was causing her heart to race and because my condition was not going to change it was unlikely that Beanie's heart rate would slow down. I was conveyed straight up to the delivery suite and advised to ring Foz as, unless Beanie's heart miraculously slowed down over the next couple of hours, whether we were prepared or not, they were getting her out that day.
I. Was. Terrified.
After 3 days of sitting on a hospital ward I was just about coming round to the idea of having the baby in a week's time and now, all of a sudden, I was having the baby that day. I was only 34 weeks. I wasn't ready. I hadn't packed a hospital bag, we hadn't painted the baby's room or bought any of the furniture, we hadn't even had parentcraft classes. I felt I was going into it so unprepared.
I rang Foz and then my mum and was swiftly conveyed up to the delivery ward and settled in a delivery room full of lots of scary looking equipment and a birthing ball. I was hooked back up to the foetal heart monitor and Foz arrived about an hour later, looking a little like a rabbit caught in the headlights. I was mean to be monitored for an hour then a decision made but emergency deliveries and c-sections kept arriving so I was constantly being bumped down the queue. I had been warned that I may have to have an emergency section and so had been prepared by being put in one of those lovely flattering gowns and having a cannula (for a drip) placed in my hand. Let me tell you there are no words to describe the pain of having a cannula put in, it was awful. Maybe I'm just a big girl but it was just horrific. After 4 hours of sitting on the monitor and being checked on sporadically the consultant arrived. Finally I was going to get a decision. Beanie's heart rate had not slowed and so it was decided to deliver me. The consultant said the preferable way would be a normal delivery but he would have to examine me first to assess when the baby was lying as my bump was so big and hard he and the nurses couldn't really tell where the baby was by feeling it. I had an internal (not a pleasant experience at all) and the consultant found that my womb was still closed and the baby's head was nowhere near in my pelvis This meant the risk was too great to artificially try and induce me by breaking my waters, it would have to be an emergency caesarean section. I was just petrified. Having a section had never even crossed my mind; I'd always thought I would have a normal labour and delivery. I'd decided I didn't want an epidural so to know that now, with a terrible needle phobia, I was going to have to have one in my spine was shake-inducing!
Within 15 minutes of the decision being made I was being wheeled into theatre. After being conveyed on to the operating table I was given a spinal, which was nowhere near as bad as I was expecting. I had the local pain-numbing injection first then the actual spinal, which felt more like extremely strong pressure on my spine than actual pain. The cannula being put in was much worse. I was hooked up to a blood rate monitor and a drip through the cannula in my hand. There was a sheet pinned across my chest as a screen so neither myself or Foz, who was sat at my shoulder, could see them performing the operation. After my spinal every minute or so the anaesthetist would trickle an extremely cold liquid up my side and ask me when I could start to feel it, by doing this they were judging how numb I was so they could start. I can't believe how awful a c-section felt. I thought the spinal was to take the pain away. The surgeon warned me I may feel some slight tugging. Slight tugging??? It was horrendous! I started to panic, even though the feeling was not quite pain in the classic sense of the word, it's impossible to describe unless you've had it. The anaethetist ended up plying me with opiates as I was getting in a state and my heart rate was going up. It made me high as a kite and I have very few memories from the birth and following few hours, which I find very upsetting.
Once she was out and they held her up for me to see I just burst into tears, it was the most intense feeling I'd ever had and worth every single ache and pain throughout my pregnancy. After she'd been checked over, cleaned and wrapped in a blanket they placed her on my chest while they were cleaning and stitching me up. As she was so premature she had to be taken to the special care baby unit. Foz was able to hold her for a while and then take her across to the unit, making sure she was settled before returning to see me in the recovery room. I was so high I have no recollection of him leaving my side during the surgery but he tells me he did. I'm glad of it as it meant our little baby was cared for in that first hour by her dad and not a stranger. After I'd been in recovery for an hour or so I was transported to the ward. On the way they wheeled my bed into SCBU so I could see my baby. They took her from the warming cot and placed her on my chest for a while so I could have a cuddle. It was during this time that Foz and myself decided to name her
Little did we know that this eventful birth was going to set the tone for Bethany's life to follow...
