Ups and Downs....

I think I mentioned before that Caitlin got an MRI scan done in July to check for tethered cord.  I honestly wasn't worried about it because she wasn't losing any function but I began to feel a little uneasy as the weeks turned into months and we hadn't heard anything, despite several phone calls I made to the hospital.  Eventually, a couple of weeks back, Caitlin's urologist's secretary rang and said the results had been looked at and Mr Bailie wanted to change her appointment from December to November and to make sure her neurosurgeon was there.  Naturally, I went into panic mode.  I mean, if there was nothing wrong why would he move the appointment forward and want Caitlin's neurosurgeon there.  I thought that if her neuro was there it meant surgery was needed.  I ended up ringing the secretary back and telling her I needed a copy of the report because I was going out of my mind worrying about what had been found.  Two days later I arrived home to find the letter lying in the hall.  I ripped it open and scanned through it quickly, while Caitlin was busy trying to take the letter off me.  I skipped to the conclusion which said she had spinal dysraphism, tethered cord, dermal sinus tract and extensive syringomelia.  I was so shocked that all this had been found.  I knew a tiny bit about tethered cord but the rest may as well have been in Chinese, I'd never heard of any of it.  I set Caitlin down in her playpen and went straight on Google trying to find out what I could and what I read terrified me.  Syringomelia can destroy the spinal cord.  The rest of the words that she had been diagnosed with I couldn't even find out anything about them.  All I could think of was she was going to need surgery and as some of the syringomelia is at the top of her back, if the surgeon nicked the wrong nerve, she could end up paralysed from the chest down.  I have to admit I thought to myself, why my baby, she has been through so much already, why can't she just enjoy being a baby for a while.
Luckily, my friends from Spina Bifida Connection and the Spina Bifida parenting group on Facebook told me they had been in similar situations and their children hadn't needed surgery.  So I'm hoping and praying that Caitlin won't need more surgery any time soon.  Our appointment to discuss the MRI results is next Tuesday and I have already started to write out my list of questions.  Caitlin's doctors must hate it when they see me coming, I ask them everything under the sun!  I'm hoping they have some good news for us but I'm getting more nervous about it as the appointment gets closer.    

We also finally started the indwelling catheter.  It took nearly a week to get the supplies, I got the wrong stuff sent out so many times, I was going mad!  When we eventually got everything and did it, it all went fine, until the next day when I was catheterizing her as normal and blood came out.  I freaked out, thinking I had damaged her with the indwelling catheter and rang her nurse who said that shouldn't be happening (that helped  calm me down) and that I should ring her continence nurse who of course wasn't in.  She rang back a few hours later and told me it was quite normal as long as there wasn't much blood, which there wasn't, and that it was probably because it was a new thing that was in her bladder for so long, and that it should settle down.  Thankfully, there's been no blood since and I needn't have worried about Caitlin hating it, she thinks its a toy!

We also went to Dublin for the weekend to visit our family down there, and Caitlin had lots of fun staying with her Godmother Trisha, and getting fussed over by her big cousins.

We're really looking forward to Caitlin's first Halloween and I will post some pics of Caitlin in her costume as soon as I can.

Catheter's and funderland!

We got a call from Caitlin's urologist last week who was not at all happy with me for not taking his advice to use an indwelling catheter for Caitlin each night.  An indwelling catheter is basically a catheter inserted into the bladder and a bag is attached to it so that when pee goes into her bladder it is drained into the bag.  Her urodynamics test had shown that there was high pressures within her bladder and Mr Bailie wanted me to use an indwelling catheter to help reduce these pressures.  I didn't want to for many reasons, the high risk of infection that comes with it was the main reason and I knew it would be uncomfortable for her, and I was afraid that keeping her bladder open all night would cause her to leak constantly.  I wanted to use a drug called Ditropan, that is known to reduce pressures in the bladder but Mr. Bailie advised me against this as there are some alarming side effects that may come with this drug.  So after we discussed the pros and cons of both methods, I have decided to use an indwelling catheter.  It was a really tough decision to make.  We have the community nurse coming out on Tuesday to show me how to do it and i'm not looking forward to it.  I'm afraid Caitlin wont tolerate it and not be able to sleep with it as it might be really uncomfortable for her.  I just hate that she has to have these things done to her and I make the decision to do it.  But the truth is, it will prevent damage to her kidneys and that is more important.  Her MRI showed that when her bladder is full her kidney is put under pressure so using the indwelling catheter during the night will help her.

On a better note, Caitlin turned ten months today! Her new favourite thing is to clap her hands, it's so cute.  We decided to take her to Funderland today which for those who don't leave nearby is a big funfair that comes to Belfast every year.

This is us on the Carousel which she loved!

Then on the Baby Waltzer, which she really enjoyed, but there was moments like this were she was like what the hell is going on here!

Next was the baby Ladybirds and Caitlin hung onto the handlebars the whole time like a good girl and had plenty of smiles for Mummy each time she went past :)

Me and my gorgeous girl

The big wheel was her absolute favourite, she laughed the whole time and cried when we had to take her off!

Finally, just before we left we walked past this rather scary looking man, but Caitlin seemed rather pleased to meet him!

It really was a fun day out to the fair :-)

Living with Spina Bifida

I have lost count of the number of times Caitlin has needed to have blood taken, or the amount of times shes needed to be sedated or the amount of CT scans she has had.  She's had an MRI, Urodynamics, ultrasounds, and we have had to learn to catheterize her four times every day.  I do physiotherapy every day with her, and give her her medicine 3 times every day.  We have regular appointments for different things and sometimes it can seem overwhelming.

I didn't know what to expect when I found out my baby had spina bifida and I have learnt so much.
Sure, Caitlin has some extra issues that we need to deal with it but spina bifida is a small part of her - it doesn't define who she is.  It hasn't held her back when she learned to hold her head up, when she learned to roll, and when she learned to sit up.  She is a beautiful, smart, funny and happy little girl who loves to play peekaboo or get pushed on her swing or wave at herself in the mirror.  She loves to play, to try to copy what your doing or saying and she loves days out and splashing in the water.  She loves to have a giggle with Daddy and a cuddle with Mummy.
As another sb mummy once said, when you have a child with a disability, the lows are really low, but the highs...well they are the highest :-)
My little girl makes me so proud and happy each and every day and the best thing that has ever happened to me is that I got to be her mummy.

                                                          

Hospital

When Caitlin was 2 days old she had her first surgery to close her back which went well.  I was discharged the next day and spend every spare minute with her in the Children's Hospital.  I couldn't wait to get us home and the surgeons were hopeful that she wouldn't need a shunt as her hydrocephalus was stable.  After 5days we got the good news that she was doing so great we could go home the following day!
That morning I arrived at the hospital fully expecting to get her home and as soon as I arrived I heard her crying really loudly.  She had developed an infection and was very sick.  She was sore and had a fever and needed to be put on a drip.  Then her hydrocephalus started to increase.  As soon as her infection started to go, plans were made to insert a shunt.  We had hoped that we would get her home for Christmas but on Christmas Eve Caitlin went into surgery to have a shunt fitted.  We were really upset that she had to spend her first Christmas in hospital but we were able to get a camp bed and our own little side room so at least we were together as a family.
Unfortunately Caitlin's surgery had some complications and she ended up needing an emergency scan at 2am on Christmas morning as her surgeon was worried he had nicked her bowel during surgery.  Thankfully he hadn't and on Christmas Day you wouldn't have thought she had just had surgery, she was just back to her usual self.  She amazed me and still does.
On Boxing Day we got to go home! We were so excited, we couldn't get out quick enough! We thought at least now the shunt is done we don't have to worry about it, right?
Wrong.  Just a month later Caitlin's shunt malfunctioned and she was rushed in for her 3rd surgery at just 2months old.  Again, she recovered really quickly, she was so brave.
We got home 2days later and Caitlin really started to developed a little cheeky personality.  Once she started to smile, she never stopped and we were devastated when at 4months old her shunt malfunctioned again.  But it never fazed my little girl, the nurses were even surprised that after her surgery she didn't need the pain relief usually needed, she just bounced back and recovered brilliantly.

The day our baby girl was born

Caitlin Rose McAuley -Steenson was delivered by C-section on 9th of December at 12.50pm weighing 7pounds 11ounces.  It was a totally surreal experience.  When they lifted her from me and I heard her cry, spina bifida was the last thing on my mind.  The doctor held her up so I could see her before she was whisked over to the other side of the room to be assessed.  Then a nurse bought her to me and let me have a cuddle! They weren't sure if I would be able to get to hold her so I was so happy that I did.  David captured that moment on camera...

I could only cuddle her for a few seconds then David got a cuddle and then she had to go into an incubator.  The paediatrician started to explain to me that Caitlin definitely did have spina bifida and went on about other stuff but to be honest I wasn't really listening.  I couldn't take my eyes off her.  She just looked so perfect.

                                          

The rest of my pregnancy

The next four months of my pregnancy were like a rollercoaster.  There was high points and some really low ones.  When we got back from Donegal, there was a letter waiting for us.  We had an appointment for a scan to be done by a specialist two days later.  That scan was probably the best scan we had after the baby was diagnosed.  The doctor was lovely and really reassuring.  She told us the spina bifida lesion was located at the bottom of her back which was really good, as the lower down it is the less damage there is.  She told us that our baby was kicking and that the fluid on her brain was very mild.  And we got the best news of all.  We found out we were having a girl!
The doctor offered us a aminocentesis as my baby was at a higher risk for having additional problems, such as having Down's Sydrome.  I refused it because there is a risk of miscarriage and after our scare I was not taking that risk, no matter how small it was!
We had scans every two weeks and when I was 28weeks pregnant a different doctor scanned me.  He thought her spina bifida was higher up than Dr. Hunter had thought and it was actually in the lumbo - sacral area rather than confined to the sacral area of the spine.  That was tough to hear.  We knew that the sacral nerves were damaged which meant she would have bladder and bowel problems but the lumbar nerves controlled the legs, so now we were faced with the nerves in her legs being damaged.  We met with a pediatrician who explained that our daughter would be just like any other child, except she would be in a wheelchair.

To cheer us up, my mum offered to pay for a private 4d scan for the following week.  We thought it would be good to see her face and her little features rather than scans that consisted of measuring fluid in her head and assessing her back and leg movement.  When we got there I remember me and David laughing that we didn't exactly fit in.  It was so grand and expensive looking with classical music playing.  And there was us dressed in jeans and trainers, while everybody else looked like they had quite a bit of money!
When we were called in we told the radiographer we already knew our daughter has sb and hydrocephalus and we were just looking forward to seeing her.  It was amazing seeing her little face on the screen.  She even picked her nose while we were watching her! She was moving around loads and I was really surprised because I couldn't really feel her - my placenta was infront of the baby so I didn't feel much unless she give me a huge kick!  During that we were just looking at our daughter and spina bifida wasn't part of the picture at that moment.  But then of course the radiographer hit us with a huge blow.  She told us she thought the baby had quite a bit of fluid around her brain and when she give us her report she had wrote that her hydrocephalus was severe.  So, the hydrocephalus had went from mild to severe within 9 weeks.  I still had another 10 weeks to go.  If the hydrocephalus continued to increase at that rate, it would start to squash her brain.  That's it, I thought.  My daughter is going to be brain damaged.

Thankfully, I had really good support from a forum I had joined, Spina Bifida Connection and when I posted my concerns, I got replies telling me that a baby's skull has not fused yet so there was plenty of room for the fluid without it causing pressure on the brain.  I then thought she would be born with a massive head.  They reassured me she wouldn't.  At my next scan I told the doctor what the radiographer has said and she scanned me, and told me the hydrocephalus wasn't severe.  It was mild to moderate.  But every scan we went to it was increasing.  I even thought they would end up delivering her early because of the hydrocephalus.  In the end though they scheduled me for a C-section for when I was 38 1/2 weeks pregnant.  The 9th of December 2009 was the date my daughter would be born.

Coming to terms with spina bifida.

The day after the scan myself and David had planned to go on a weekend break to Donegal.  We had spent the past 24hours crying, thinking about spina bifida, trying to find out more about it and driving ourselves crazy.  So we decided to go to Donegal as planned.  There was no point staying at home glued to the internet trying to find out what our baby's life was going to be like because the internet had no definate answers. 
So off we went.  We spent the weekend talking and trying to come to terms with what had happened.  It still felt a bit unreal.  We were grieving for the healthy baby we thought we had,  we still had the same baby but this baby was going to be disabled.  Then something happened that completely changed our perspective on everything.
I started to bleed. 
We rushed to the nearest hospital and ended up in the wrong spot, with David running up and down empty corridors trying to find a doctor.  We eventually found a member of staff who told us we were in the wrong hospital and had to go to across the road to the other part.  When we got to reception the room was full of waiting patients and I thought we would be there a while.  But when David explained what was happening we were sent straight up to Gynacology who sent us to Maternity.  I was a blubbering mess.  I thought I had stressed myself out so much I had gone into labour or I was losing the baby.  The past few days had been centred around spina bifida and now it just didn't matter anymore.  I just needed my baby to be alive. 

After what seemed like an eternity the doctor came and took me to be scanned.  She watched my baby on the scanner and pointed out to us her little heart beating.  She was just fine.  And I had never felt so happy.  

The day of the diagnosis

30/ 07/ 2009.  The day that sent our whole world into a spin.  My 20 week scan.
I was really looking forward to my scan.  We had only had one scan before and it was just amazing.  Our baby was waving to us and jumping around and I went into this scan looking forward to seeing her.
When we walked into the scan room it was different than before, I suddenly felt nervous and I didn't know why.
The radiographer was quiet as she scanned me, and she spent alot of time looking at the baby's head and spine.
Then she stopped, turned to us and said, "I'm just going to have to get the doctor, there might be a problem with the baby's spine."
My heart sank as she walked out of the room and I turned to David and said, "What if it's spina bifida".  I don't know why that popped into my head, I didn't know hardly anything about it, I knew my cousin had it but it was nothing we had worried about.  I had taken my folic acid before I conceived my baby so I thought spina bifida wouldn't affect us  - but now I wasn't so sure.
David reassured me, he told me that the radiographer probably just needed to make sure everything was okay and that they probably double checked with the doctor all the time but neither of us could take our eyes of the image frozen on the scanner.  It was of our baby's spine and towards the bottom there was a blurry white mark that wasn't anywhere else.  We just stared at it hoping that our baby was okay.

Eventually the doctor came in accompanied by the midwife and turned the lights on and asked me to sit up.  Their faces were full of sorrow and concern and I knew it was bad.  I braced myself but it just didn't seem to be real.  This kind of thing happens to other people.  Not us.
But it had happened to us.  The doctor explained that our baby had spina bifida.  I found myself asking tons of questions, I can't even remember what they were and I don't really remember her replies.  She mentioned a wheelchair a few times and that we would find out more when we had a scan done by a specialist in a few days.  I remember the midwife was rubbing my foot and David was rubbing my back while I was trying so hard not to burst into tears.  The doctor asked me was there anything else I wanted to know and I asked her was there anything else that appeared to be wrong.  She hesitated then told me that there was some fluid on the baby's brain.  It was at that moment I just completely broke down.  I imagined my baby in a wheelchair, mentally disabled and having no quality of life.  Yet there was no doubt in my mind of one thing.  I was going to keep her.  She was still my baby and I loved her.

When we got home I was on the internet straight away, typed spina bifida into Google and felt sick as I read what spina bifida meant.  Our baby had a split spine.  Spinal nerves were therefore exposed and damaged.  Spina bifida meant paralysis.  It meant our baby would have bowel and bladder problems. 
Then I looked up fluid on the brain.  It meant hydrocephalus.  Hydrocephalus could cause brain damage.  It could be controlled my a shunt being fitted but the shunt couldn't be placed until she was born.  I was only half way through my pregnancy and I had never felt so scared.

About us

I decided to start writing this blog as October is Spina Bifida Awareness Month.  If you asked me a year and a half ago what did I know about Spina Bifida the answer would have been not much.  Now, I'm becoming quite the expert!
My beautiful little girl Caitlin Rose was born on the 9th of December 2009 with spina bifida and hydrocephalus.  This blog is about our experiences with spina bifida and how we live with it.  I'll start from the beginning, on the day of Caitlin's diagnosis...