A wee introduction to my lady ...

Hello, I thought I best start putting some posts on here just to let people know a bit about our gorgeous little lady Kaycee.   

She is an ex prem, micro prem born at 25 weeks weighing 1lb 4oz (590grams).   She spent a long time in SCBU (9months) before coming home.   She has Severe Chronic Lung Disease, Pulmonary Hypertension (which is a life threatening disease if not treated correctly), She has a ASD (atrial septal defect - Hole in the heart) she is Oxygen Dependant, and globally delayed due to premiturity.  She has other medical problems but they are the main ones which contribute to her being hospitalised a lot of the time.  

She has been in hospital the majority of her life, all across the NorthWest, both as a Neonate and as a Infant.   She is currently in PICU (intensive care).   

She is an amazing little character for someone so small and for what she has been through in life.   She NEVER crys and if she does you know she is struggling with something.   She always smiles, shes a fantastic peoples person and makes everyone smile & melts the hearts of everyone she meets, even the toughest of characters like Doctors.  She fights to be here 24/7,and to date has never given up.   She fights everything shes challenged with and bounces back bigger and better and much more lovable.   She truely is amazing, and thats not us being biased.  

Shes taken over my page on Facebook and I decided to create her a blog.   Just so I could probably get more information out on here and quite possibly as this blog travels through family, friends and complete strangers we might actually bump into someone who has experienced this rollercoaster of a journey and might actually relate to our pain, anger and frustrations.  Because as it stands at the moment, we feel alone, we feel its only our premature baby, our strong little lady fighting the fight alone.   I would love more than anything for someone to find this page who could give us a piece of mind of what the future might be like.   As it as at the moment, we life everyday as if its the last and love her more and more.  We NEVER give up, we NEVER cry near her, We are ALWAYS positive around her telling her how proud we are to be chosen to take this horrible journey with her.  

I'm strong because my lady is amazingly strong, she is such an inspiration to us as parents so god knows what she is to people who have never met her.  

Anyways, I will try and get the story from the beginning on in bits.  Just so I can hopefully find someone in this world to have experienced or is experiencing this hell.  

As much as low as low and tough as tough it gets, everyday is worth the pain just to have my baby girl in my life.  I love her with all my heart and I am the proudest mummy in the world.

Thanks Everyone again for your support.  Feel free to contact me.

xxx

The beginning ...

We found out at 9 weeks pregnant that we were having twins, and like everything in the past 20 months nothing was simple.  

We found out we were pregnant to identical twins, monochromatic diamniotic twins, meaning one placenta and two individuals identical which are very rare and a very complex pregnancy.   Not only did it mean we would have to have scans weekly but also I would more than likely experience premature birth with a greater risk to losing both.   It also meant that I had a risk of my babies getting TTTS, a deadly syndrome called twin to twin transfusion syndrome, where one of the twin takes all the nutrients and goodness and the other couldn’t thrive in the womb as well as another.    Of course with my luck I feel into this category.  

We was transferred out of Oldham’s care to a specialist hospital in Manchester (st Mary’s) were we would be watched even more carefully and advised on the best possible care.  We got told that Birmingham could do laser surgery to split the placenta in two to give the babies a better chance of survival, of course anything like this comes with risks.  I could lose one baby or even worse both.   Or they would terminate the baby who was less likely to survive, horrible thought now but at the time when your clutching at straws because you want to make sure you come away from the pregnancy with at least one that sounded quite reasonable.  

The TTTS later in my pregnancy seemed to calm down and my girls were out of the risk factor from that, instead I was diagnosed with Velmentous Cord insertion on twin 2 which is Corrie, which means that my cord runs up my side of the womb into the end of the placenta instead of into the middle, again this could cause problems.   Although my doctor wasn’t concerned and after 11 weeks of scans and careful watching I got transferred back into Oldhams care with the plan to take my girls out by 32 weeks, by C Section 29 weeks at a push.  To me at the time this sounded great as I had now reached the twin safety net of 24 weeks, and starting to get massive, tired and feeling the pregnancy.  Little did I know that I was about to go into labour exactly 7 days after my last scan.  

At 25 weeks I drove up to the Hospital (don’t ask how I managed that) and got told I was and had been in slow labour for a few days and that I was 2cms.   Obviously I was absolutely petrified and in pain.   My girls weren’t suitable to be born at Oldham as they didn’t take babies younger than 28 weeks gestation which meant more hassle as I had to be transferred out ASAP in order to give my girls a better chance of survival at a unit that could help me.   Wythenshawe flagged up and I was rushed down there.  

I do not remember much of my labour but the small memories I do have are either funny ones from being so drugged up from the morphine or bad ones, hearing the words “I’m sorry darling but you have lost twin 2 (Corrie)” at 6.15pm on the 31.08.2012 was heartbreaking, I couldn’t even look at the ultrasound because I felt so lost.  Even though I had  never met her I knew where she was in my tummy at all times (due to her being stuck to the wall of my womb), she was the lively one always nudging me telling me to back off and move off her at nights.   Inside it was killing me, but then I got a sudden burst of protection and I was scared for my other girls life, due to Corrie passing away from Acute TTTS, Kaycee was still at risk of dying from the same.

They managed to stop my labour and by Thursday they were due to discharge me to Oldham for hospital rest until Kaycee would be more safer to come out, as sometimes you can go full term with the other twin.  

But Oh no Kaycee decided to come that morning.   The doctor examined me and basically told me sorry love you aint going no where your girl is on her way.  Withing seconds the room was filled with doctors and nurses.  I was that scared I felt like I was on the top of a rollercoaster it was the worse feeling in the world not knowing how this was going to be as I knew that I had a little girl coming out too early and one other girl born sleeping.   

Then at 10.25am Kaycee was born, weighing a tiny 590grams (1lb4oz).  The room was silence, due to not being able to find a heartbeat so it was panic stations for the doctors as they thought the other twin Corrie had dropped from the wall of my womb down.   I just thought I had lost them both it was dreadful.  Then in true Kaycee form she let out a little screech, which to this day still melts my heart when I think back.    I never saw Kaycee they did try and show me but she was too tiny to even see, and too critical to hold.  They rushed her up to SCBU so that they could deal with her there.   

I then had to wait an agonising 2 hours until I had to deliver Corrie, due to my contractions not actually starting properly when I delivered Kaycee.   I had no drugs with Kaycee I simply had to push her out.  With Corrie I had everything and don’t remember a lot (& from what I am told I am glad I do not remember it at all)

At 12.33 weighing 510grams (1lb 1oz) my gorgeous sleeping angel was born.   She was tiny (510grams, 1lb 1oz) but so perfect.   I remember Michael trying to protect me and asking me am I sure I want to meet her as she was a bit battered due to the hell they had taking her out, as she was literally glued to my gall bladder.   I needed to meet her, after all this little madam had won my heart in the womb with her cheekiness at bedtime.   I didn’t really have a favourite twin in my belly as they both seemed to have their own ways but Corrie was the one who would make me suffer the most, I used to call her the naughty one.   She was perfect, so tiny, smaller than a forever friends bear.  They put her in a little pocket that had been knitted,   She looked so peaceful.   I was sad but it was weird because I felt an instant connection with her.  I loved her so much and just couldn’t believe how much she looked like me, how perfect she was and formed considering how early she was.   It was an unbelievable experience, and to be honest with you I cant remember every moment spent with her, and I think anyone who has experienced a still born birth could probably relate to me here, not sure if you all will, but I didn’t feel too saddened, not because I had Kaycee in Scbu but just because I felt she was at rest and in safe hands, it’s a weird thing to go through and a very hard thing as a parent to go through at the same time.    

The adventure then begins ...

Spending precious time with an Angel.

The girls were born on a Thursday, so over the course of the next few days I was able to spend a lot of time with Corrie.  

We decided that we would agree to a post-mortem examination to determine the true cause of death.  We knew what she died off but just for clarification that no other aspect had contributed to it.   We also wanted it for research reasons, due to TTTS not being a curable disease, just to help the medics understand it a bit more and like most things in life find out if anything can stop it in the future.  

The next few days were surreal, I had met Kaycee but was petrified by everything surrounding her (will explain my experience with Kaycee later), and I wanted to spend loads of time with Corrie.  I used to joke and say that I had a daughter in the fridge (as Corrie was placed in their in order for her body to stay the same after she had passed) & because Kaycee was in an incubator nice and warm I used to say she was in the oven.  I know that sounds weird but that’s the only way I could cope with it. 

Even though I couldn’t do much with her like some families can with a still born like bathing, dressing etc.  It was nice to see her all cuddled in her basket, she looked like she was fast asleep, and she looked so peaceful and beautiful.   On the other hand it was hard to see her like this but when I was with her I felt better but it was very upsetting, the tears and pain was unbearable.  

Over the next few days it was heart breaking.   I would find myself sitting near Kaycee and blaming myself, I would cry myself to sleep; I would burst into tears just at nothing.   I found it so hard to deal with.   The only comfort I had was I knew I could bring Corrie out and just sit and stare at her.   I remember the smell of the room, and to this day if I smell it, I say “Corrie Smell” (fresh leather, due to the room being newly decorated).  I loved that smell, I found myself just sitting there cuddling the sofa and looking at Corrie.   I found so much comfort in that.   I have even recently bought a new leather sofa now, so I can smell the “Corrie smell” (suppose it’s a good excuse for a new one too eh?)  

One night I got talking to an amazing lady, called Emma.  She had just had a baby girl, who may I add looked huge next to Kaycee.  Before I got to know Emma I used to call Jessica the giant of SCBU.  Well a 4lb baby compared to a 1lb scrap was HUGE!! Ha.

She told me about her previous pregnancy before Jessica, baby Thomas, he was still born (a single pregnancy and full term), I remember thinking wow she’s amazing, at least I still have Kaycee.  We stood and spoke for hours about her experience and mine now.  I found so much comfort in it all.   I remember getting back to the room and crying, feeling selfish for moaning at her.  It was the most surreal experience.  That night I had the weirdest dream ever.    I dreamt that I was walking down this white corridor crying holding a baby boy with his name beginning with “T”, I was shaking cause I was so cold & I meant cold to the point of freezing.  But then all of a sudden I felt this sudden burst of happiness.

In the morning I woke and I was sweating.  It was freaky, because what I hadn’t realised until then & when Michael spoke to me is that I had woken up crying my eyes out, cupping my hands saying I was holding a baby, I was ice cold and had wondered onto the ward searching for blankets.   After speaking to someone who believed in spirits and afterlife etc they told me Corrie was giving me a hug that’s why my body was so cold.   I do not believe in things like this but by eck it will never go out of my mind that dream.  I had a few after that but nothing like that one. 

We had a lovely lady who helped us the whole way through it and without her I don’t think I could have done it.  She was just amazing.   She sorted everything from the Birth Certificate (or Still Born in Corrie’s case) to the full funeral arrangements for Corrie.   If I needed to let off steam and moan about the most irrelevant things, she sat there held my hand and never once butted in, never gave me her opinion was just simply there for a shoulder to cry on.   She really was my guardian angel. 

Corrie’s date for going down for post-mortem was Monday, saying Goodbye that morning was worse than anything I have ever done, because I knew that I wouldn’t be able to just take her out of the “Fridge” I knew that this was goodbye forever.   I remember crying so hard it hurt.   I had to get away from everyone and be on my own.   I ran out of the ward and down this long horrible corridor to the main building.   I remember stopping, gasping to breathe through my tears and sitting.   I hadn’t realised I had ran into the Hospital Chapel.   (I am not a religious person and never been to a church unless its been wedding, funeral etc)  My tears stopped and again I felt happy.   I must have been there for hours because when I got Michael looked at me, he looked worried.   He told me I had been gone for over 2 hours.

1^st October 2010, the date of Corrie’s funeral.   It was a very wet day, I remember everyone getting to our hospital accommodation (as that’s where we was staying at the time with being so far from home) early, I was so upset by this because I wanted to be on my own, wanted to get dressed on my own and just wanted to be alone.   I was that cut up I remember giving the wrong turning to my mum to get to the Crem, which caused problems as they got lost.  But I just could function.   I couldn’t believe that I had to go to my own daughter’s funeral.  I was numb.    We had Corrie Cremated because we was out of the area and the only other option was to put her in the baby garden with other little angels.   But I personally didn’t want this for her.  She was ours, well Kaycee’s really as she had spent more time with her.   So we decided this will be best.    Hopefully when Kaycee is better either this year or October 2013 we are opening a grave up and having her ashes put in and getting a lovely stone for her.  That way we can have a lovely place to visit.  Our original plan was to let Kaycee choose where to put her but knowing our girl she would decide Mcdonalds or something silly.  We wanted somewhere all the family could go to visit whenever they wanted, at the moment she resides at her Grandma&Grandads because I didn’t want her to be home alone (silly eh).    Back to the day, much of it was a blur.  We had an amazing Chaplin who had gotten to know us over the month that went by, and he made it so personal it was just a gorgeous send off for a perfect angel.   We had two gorgeous songs “Time to Say Goodbye” & “Unbreakable” both suited down to the ground.   Her tiny coffin was gorgeous and all the flowers.   I felt very heartbroken but I knew she would be safe.   The whole day (considering) was lovely and I am glad I got to meet my gorgeous angel Corrie Brooks. 

R.i.P baby girl mummy&daddy love you and miss u more everyday. xxx

Meeting my gorgeous girl for the first time ...

After giving birth I wasn’t allowed to move for a few hours because I had an epidural, obviously I couldn’t feel my legs or anything.  Michael went up and seen Kaycee whilst I was spending time with Corrie.   This is where our differences where.   I had spent time with Corrie and bonded with her and Michael was with Kaycee bonding with her.   I found it easier with Corrie but I think that’s because I knew she couldn’t hurt me as much as Kaycee could.  

It wasn’t the first time I had been in SCBU because the day before I got shown around and got everything explained.  I remember meeting a little lady called Faith, I remember thinking wow she’s tiny but so gorgeous.   I couldn’t get over how small a baby could be and be so perfect.   I never stopped talking about baby Faith all that night, I wanted to go see her again but obviously I couldn’t.  

The nurses took me up in wheelchair to see Kaycee, and even though I had seen Faith the day before I was a little bit frightened, but looking forward to seeing my other girl. 

I remember getting into the room and I felt sick, I felt like the room was tiny and that everyone was staring at me.  I remember trying to stand from the wheelchair and then suddenly sitting and asking the nurses to get me some water.   I was horrified.    I looked at Kaycee and burst into tears.  I was so upset because Kaycee didn’t look like Corrie.  Mainly because she was hooked up to a ventilator and had wires everywhere.   I was heartbroken because I remembered how tiny Faith was and Kaycee was very tiny compared, I don’t know why that upset me so much but I was very upset by it.  I remember whispering to Michael that I wanted to go back downstairs, he asked me why and I didn’t know why, but then I kind of shouted it and told him I need to go downstairs Corrie needs me.   I felt scared weak and just wanted to see Corrie lying peacefully in bed.  Its not that I didn’t like Kaycee I was very scared.  Most people who have experienced this will realise what I mean.  The whole walking into the room, seeing a baby that’s way too early hooked up to many machines with wires hanging out everywhere was terrifying. 

I didn’t go back up to Kaycee again till late evening, once I had got my head round the whole situation.   This time was a bit easier, it felt like we was the only people in the room.   I walked over to Kaycee and looked at her.  I couldn’t believe how tiny she was, but yet so perfect.   The nurse came over and asked me if I wanted to touch her.   I didn’t think you were allowed to.  I remember washing my hands thinking what if I break her.    Putting my hand in for the first time was like putting your hand in something off I’m a Celeb, pulling it back and egging yourself on to touch the object inside, it was very scary.   I touched her hand and couldn’t believe that she gripped me, her whole hand covered just my finger nail.  Her hands were perfect with tiny little nails on.   She felt so soft and light to touch.   I instantly fell in love.  Even though I loved her I still didn’t feel like she was mine.    I had already felt robbed of a pregnancy and of Corrie, I just couldn’t accept that she was mine. 

Everything felt so surreal.    At the time of this we was so naive to all the situation and never had much medical background to it all, which I feel knowing what we know now was probably the best situation to be in.  To be a parent that looks like a rabbit trapped in headlights, to think that its ok get to your due date and you can take your baby home, no problems and live your life like it was planned.   I wish it was so simple like that.