Reflecting

It's crazy how fast the time goes by.  As my baby girl fast approaches her 2nd birthday I have been thinking a lot about the past two years.
I remember so well the day Caitlin was born.  I remember the first few months of my pregnancy.  I daydreamed about the moment I'd get to cuddle my baby, the look on David's face when he seen his first born, the stream of visitor's we would have with cuddly toys and cuddles for her.  I couldn't wait to smell her baby smell, feel her hand wrap around my finger, watch her wiggle her toes.  I was so excited to bring him or her home with us. That's the way it should have been.

Then spina bifida came into our world.  Suddenly, our baby girl wasn't the baby we thought we would have.  We hadn't imagined her beautiful little body to be broken.  So when the day came to go into hospital, it wasn't because labour had started.  It was because the hospital needed to have a team of specialists waiting for her to arrive, to rush her to Intensive Care, to prepare her for major surgery.  Although I already loved her dearly, I was terrified of her coming into the world.  She was safe were she was.  I was keeping her safe.  I knew that when she was born I couldn't keep her safe and that broke my heart.

I remember like it was yesterday, waiting anxiously in the hospital room - the time was ticking by so slowly.  I remember a cot being beside my bed and it made me feel so sad.  I remember leaving the room and when I returned the cot was gone.  It wasn't needed.  My baby wasn't going to be with me after she was born.  At that time I found it difficult to have hope.
I remember the nurse finally coming to get us to bring me to theatre.  I remember David holding my hand, and squeezing it tight.  I remember the spinal block, the many, many surgical staff in the room.  It reminded how serious this was.  So many medical staff for one little baby.  My little baby.
I remember tugging as the doctor told me she was nearly here.  Then I remember that sound.  The sweetest sound in the whole world, and my worries and fears melted away right in that moment.  It was my daughter crying.  I started crying, and laughing at the same time.  She was here!

The nurses were all commenting on what dark hair she had and I was desperately trying to sit up, which is a bit impossible when you are paralysed from the waist down!  I started shouting, "Would somebody let me see her!!?" My manners went right out the window lol.
They took her to me and let me have a cuddle.

I was elated.  They say you have a love for your child like no other.  Never have I heard a truer word spoken.  The love for your child is unconditional, pure and true.  How much I wished for my daughter to be healthy is indescribable.  But she wasn't  She was taken from us, shortly after that picture was taken, and as I was left on my own in the recovery room I ached to be with her.

I remember visiting her in the Neonatal Unit and I heard her screams.  A nurse ran out and told me not to come in, that they were taking her blood for surgery.  They were also fasting her which meant she was starving.  She was a day old.  I couldn't do anything to help her.  They ended up cancelling that surgery and she was fasted again the next day.  Those first few weeks of her life were a dark time, when they should have been the best of my life. I felt so guilty that I couldn't help her, I couldn't protect her.  I felt I was failing her.

I remember the day of surgery.  Caitlin was 2 days old.  I was in my room when I got a phonecall to say the ambulance had arrived to bring her to the children's hospital.  I hobbled as fast as I could to her to say goodbye and the whole way up I told myself,  Be Strong.  I have to be strong.   It's the least I could do for her.  But as soon as I saw her I burst into tears.  There she was, so beautiful, peacefully sleeping in her incubator which was wrapped up and secured for the ambulance.  She looked so innocent, not a care in the world.  No idea that she was about to be given anathesic and major spinal surgery.  I didn't know how she would react to the anathestic.  Nobody did.  The surgeon only had to make one tiny wrong move, one little jerk of the hand, and she could have ended up paralysed.  I was so scared for her.  Every instinct told me to pick her up and run but I knew she needed this.

So we waited.  And waited.  And waited some more.  It was so unbearable.  They told us 2-3 hours and 4hours later we still had no news.  I was panicking.  What had happened?  And then her neurosurgeon walked in the door and my heart skipped a beat.  We were told he would call so why had he come the whole way over here unless something had gone badly wrong?  He introduced himself and I cut in and asked him "Is she okay?"  He said yes.  I had never been so thankful.  He told me to rest, (as if that was ever going to happen.)  I went straight to the nurse and told her I was going to see my daughter.  Ten minutes later I was walking as fast as I could around the Childrens Hospital in my PJs, getting a few funny looks from passers by and we couldn't find were we were going.  Eventually we got to the ward she would be in and they took us to theatre and there in that massive big room was Caitlin, in her incubator at the back of the room, monitors bleeping all around her.  But she was alive and that was all that mattered.

How I got through those first few weeks, is because of her.  She showed me true strength.  She lifted me up.  It was a horrible time, and I wouldn't wish it on my worst enemy.  After 5 days the nurse said we could bring her home the next morning and I practically hopped and skipped the whole way up the ward to collect her.  Then I heard her sore cry and my heart sunk.  She had caught an infection and needed to stay in.

 Then the fluid on her brain started increasing even more, to the point were the fluid was causing her eyes to look like this,

So, she needed to have a shunt and unfortunately this had to be done on Christmas Eve.
We spent our first Christmas at the hospital, with Caitlin recovering from her shunt surgery.

She looked so adorable in her Santa suit.  The nurses were lovely.  When we woke up on Christmas morning they had left a stocking on the end of Caitlin's bed with a few presents.  That was so thoughtful of them.

We got the best present of all though.  It may have been a bit late, but on Boxing Day we got to go home!!

I would love to be able to say it has been all plain sailing from those first few weeks but it hasn't.  I don't think Caitlin's shunt ever worked when it was first inserted as shortly after she came home from hospital she was irritable, vomiting alot, slept alot.  It took me a month to realise it could be her shunt.  It never occured to me before that it could be blocked because she has just got it.  I didn't think it could block at any moment.  But it can.  And it has with Caitlin.  It's blocked five times.  She's on her 6th shunt now.  It is so scary to know that my daughter, the most important person in the world to me, is kept alive by an artificial device that's attached to her brain.  It can malfunction at any moment and that frightens me.  I wish that she didn't need it but the fact is she does.  I hate her shunt because she needs it yet I am so grateful for it because it gives her the chance to live.

I sometimes can't believe a child so young can go through 7 major surgeries before the age of 2, yet be so happy.  She's shown me that.
Through her own hard work and determination she learnt to sit up,

 crawl,

stand up,

 cruise along furniture

and walk with her walker.

Even after surgery, I'll take a picture of the wound,

And she'll turn around and smile at me.

That's just her nature.  When she's knocked down, she picks herself back up and smiles.  It's pretty admirable.

I've had the privilege of watching her grow, smile, giggle and enjoy life as she does.

It's an honour to be her mummy :)