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.  

Being Naïve

Over the course of the 8 weeks we spent at Wythenshawe SCBU.  We didn’t know much of the medical side that was happening.  We just came and seen Kaycee helped with her cares and just listened to the doctors.  Not that we understood anything they told us even in the simplest of terms they could possibly tell us in.   I just didn’t get any of it.   I remember them once taking us to a side room and telling us that due to the lack of blood going to her toes she might lose one or maybe more.  I remember feeling heartbroken and thinking I don’t want my daughter to have funny feet.  Gosh if only that was her only problem now, I wouldn’t be bothered.  

Its scary how naïve you actually are to it all, every parent we spoke to we all were like, yes that’s what they are doing to my baby.  We all thought it was normal to be like this, and for our babies to be like this.   When in fact looking back, our babies were fighting for survival and trying to fight through SCBU.  Which I now know was the most important part of Kaycee’s life.   Better treatment in the early years helped them so much in later life and to this day I stick by this.   Wythenshawe was a very small but fantastic unit, everyone nurse was brilliant and answered any questions you wanted to ask, even if it was the most silliest question in the world they would answer it.   

Kaycee was doing fantastic, only spent 32 days on the vent, but because she was a micro prem and under 1kg, she had been on the vent for over 28 days she developed Chronic Lung Disease.  At this stage of our life’s we didn’t think too much into that because we got told they grow out of it and live a normal life.   Naivety is an amazing thing.  

Then on 23^rd October I went upstairs and got told Kaycee was going Oldham.  I remember running back to Michael and telling him in floods of tears.  Michael re-assured me and we went back up to see Kaycee and to speak to the nurses.   They reassured us and told us because she has been doing fantastic and been on Cpap and having time off in oxygen she was stable enough to be transported back to Oldham for care on a lower level.   Normally a neonate has to reach 1kg to be classed as high dependency, but being the little monkey that Kaycee was instead of putting that extra 20grams on she lost it.  So she was 960grams in weight but classed as high dependency due to the level of breathing support she needed.   Looking back she did do pretty amazing at Wythenshawe and I do believe that if she would have stayed there we quite possibly wouldn’t be in this situation now. Don’t get me wrong she would still have her problems but I think Kaycee was never suitable to be moved from such a specialist unit to Oldham where they had never seen a baby like Kaycee with many complications that she brought with her.  

The transport team arrived and I burst into tears seeing her in her portable incubator, I was heartbroken and scared.   I was leaving a hospital where I had my girls, said goodbye to one of my girls and experienced the hardest days off my life there.  I couldn’t believe that I had to leave after what felt like a lifetime of being there.   I don’t like goodbyes.  I was upset to leave the nurses too as they had been my support at the times that I was struggling, but more than anything I had made friends with other premmie mums.   Friendships that no other friendship could compete with because they too had a special baby, and they understood how you feel and what it was like to feel robbed of your pregnancy.  I again I felt isolated. 

Home ...

After packing our accommodation up, we set off after the ambulance had gone so that we could give time for Kaycee to settle into her new surroundings etc.   

We arrived about an hour after Kaycee.   Everything was so different.  Whereas at Wythenshawe someone was also by Kaycee’s bed.  At Oldham they all sat at a nursing station watching monitors.   I didn’t like the set up but we got told different places have different policies and really Kaycee was well enough not to need 1 to 1 nursing.  It didn’t feel welcoming at all.  The nurses were nice but we never really spoke to any of them until the evening.    The most distressing part was because I knew that I would have to leave her alone in this place at night.   We didn’t leave until late that evening.     The next week day we got told that we had to buy Kaycee’s nappys.   I know this sounds silly but I burst into tears.   Kaycee didn’t fit in newborn sizes or anything and I just felt silly asking where we buy them from.   I was so upset that they couldn’t supply these.   We went Boots and a lovely lady helped up buy Micro Nappys.   They were so expensive for a pack of 20.  By now I didn’t have a good vibe about Oldham.   I couldn’t and didn’t feel at ease.  I felt at this stage Kaycee was too complex for them.    But I just thought it was me being her mummy and being very overprotective. 

As the weeks went by we got to know a few nurses, told them what had happened so far with our lifes and we established a good friendship with them.   I started coming round to the idea and realised that this was the next stage in Kaycee’s life and it meant we were closer to getting her home.   So I started to , relax and “enjoy” the experience, of doing all Kaycee’s cares, feeds and getting to know my daughter.   The hurtful thing at the time was, that I still couldn’t let go of Corrie.  I still cried every night once leaving Kaycee and still didn’t feel close to Kaycee like I was with Corrie.  

Novemeber came and Kaycee started to get poorly.   Obviously due to use being so naïve we got fobbed off saying its what “all” premature babies do, so you accept it and move on.  We thought going back on cpap / bipap was normal to give her a “rest”.   Not the fact that my daughter was very poorly and couldn’t breathe by herself like we know now.   I remember walking in in the morning, and finding my daughter on these machines.   No one had rung us in the night to tell us she had gotten so unwell.   I only realise this now because any slight change the phone rings and your informed.  This angers me so much now, communication is the key especially when that baby is yours who they are treating.     

First holiday to Liverpool

Kaycee needed a hickman line done via a small op because she was so hard to canulate due to all her tiny little veins being had.   So she got transported up there.  Kaycee at Oldham was on Cpap 24/7 , and the doctor went mad as he told us she was over ventilated.  At the time we didn’t understand this, we just got told Kaycee “has no lungs” so she needed this support 24/7.    He took her off the Cpap and put her in ambient oxygen in her incubator.   This was the first time since Wythenshawe that we had seen our gorgeous girls face without machines on it.    He also told us our daughter was very poorly.   Her infection markers were through the roof at 265.  A normal babies markers are 5 or below.   We were so upset and angry with Oldham.     When she went for surgery the consultant said that any concerns with regards to her bowel when she goes back to Oldham then to ring them and they will arrange for Kaycee to come back and for studies to be done.   Because NEC had been suspected they knew that they had to make sure she wasn’t threatened by it.    

We went back to Oldham on the Tuesday, I remember everyone being so surprised because Kaycee was in oxygen not on the CPAP.     Kaycee’s tummy was terrible, so distended.   Weeks had passed previously and kaycee’s feeds were started then stopped cause she was so poorly with them.   They told us they suspected “NEC”.   How they told us was like, “oh, its only NEC like it was some sort of tummy bug” not the fact that this takes many premature babies LIFES!!!!!!!!!!!!!!! 

When me and Michael read up on it we went mad, we got pulled into the office and Michael gave the doctors a dressing down.   This was a massive turn around for us as parents.    We were starting to get medically educated from being in this environment 24/7.    We told them we want Kaycee out of Oldham ASAP.   Within hours off we went again this time to Alder Hey Children’s Hospital for Emergency Surgery.    

We arrived at Alder Hey and got seen by her Consultant straight away.  Normally they do a contrast study where they put dye in the body and watch where it goes by x-ray.  They decided to not do this and go for the op.    She was first down the next morning for this operation.

Waiting for her to come out of that operation was probably the worse wait ever (well in Kaycee’s life so far).   It felt like she was gone forever.   When the phone called, my body froze and Michael took the call.    Everything had gone well.   She had a stricture removed secondary to NEC, 4cms of her bowel removed end to end.   The Consultant was very pleased to how it went.    She had been moved to PICU to be observed overnight due to complications that could go wrong.   

Previous to the operation the consultant had explained to us that we could be in Alder Hey for a number of weeks to keep an eye on her and to try and establish feeds, just to avoid complications and future trips up to Liverpool relating to her bowel.   So we had a room at the McDonalds Home from Home accommodation.   We stocked up on food and then went to see Kaycee.   We couldn’t believe what we saw next.    She was READY in a transport incubator ready for OLDHAM!!!   My heart sunk.   I felt sick with worry.   How could they deal with this, they couldn’t deal with her before never mind post-surgery.   I remember kicking up a fuss, and we had all top consultants, nurses in charge everyone speaking to us explaining that because she wasn’t a Liverpool baby she had to go back to her home hospital.   I felt ill!!!

Here we go again!!!

Back at Oldham we had to give them the benefit of the doubt.  Everyone was tip toeing around us as it was cause we had really kicked off beforehand, but I think anyone would to be honest if they could see their child so ill like Kaycee constantly was.   Kaycee hadn’t been fed properly for 9 weeks whilst she was being cared for in Oldham.   To give credit to them they had listened and Kaycee was watched more closely.   Everything seemed to be going fine.  

Christmas came and things were running great.  Kaycee was on full feeds, out of an incubator Christmas Eve and in a Cotbed ready for Father Christmas.   Everything was fantastic.   We had a lovely day considering the mayhem on the day.   But all in all we really had a nice Christmas 2010 with all the staff there.  

Boxing Day came and we encountered our first problem.    I had been expressing my milk for Kaycee as they are always trying to promote breast feeding as it’s the best for your child etc etc, and because Kaycee hadn’t been fed for 9 weeks I had masses of the stuff.  I filled the entire freezer with milk and everyone used to joke and call me Daisy the Cow.   A nurse came in and asked me could I express some milk for Kaycee as they were none in the fridge.  So without thinking I went and did the same.   Whilst I was expressing I thought I would pull some milk out of the freezer so that I wouldn’t have to do it all the time as my milk was starting to disappear because it was nearly 4 months now that I hadn’t held my daughter properly, so my milk supply was starting to get low.    I was horrified when I opened the freezer.  It was EMPTY.   I stopped expressing and went over to the nurse and asked where my milk had gone.  She told me that I hadn’t expressed any.   I told her about my supply and her face dropped.    Not one person came up with an explanation to where my milk had gone.  ALL the nurses denied wasting my milk when I had seen bottles in the fridge and had to throw some of them cause they weren’t dated when they pulled them out of the freezer.   I was so upset.  I know it doesn’t seem massive but it was to Kaycee because normally you introduce normal milk mixed into my breast.  This meant Kaycee had to go from breast to milk without weaning her onto it.  And wow what a horrible time for Kaycee that was.   

Kaycee couldn’t tolerate it and the dieticians and everyone tried everything Kaycee’s bum looked like someone had poured acid on it.   Her belly was hurting her too and she kept being sick.   It wasn’t nice to watch.   She got that tired with it all she had to be moved back to room 1 and put back on Cpap, “for a rest”.      Eventually they started her on a lactose free milk and she started to absorb it and tolerate it.   Things started getting back on an even key.   I never did get an apology or an explanation as to where my missing milk went.  

After this things were a bit smoother.   We had a scare of H1N1 on the ward and everyone had to have their swine flu jabs.  All the babies were given an injection to protect them too.    Kaycee was back in nursery and I couldn’t believe it.  She was taking 2 bottles a day and coming along nicely.   That good that on the 1^st February we had a pre-discharge meeting.   We had the community nurses coming talking to us about what they would be doing at home etc etc, and we got a plan in place ready for Kaycee coming home on the 1^st March.    

We couldn’t believe it.  Kaycee would be going home aged 6 months old.   Of course this was really too good to be true.

Post Natal Depression

That evening I got pulled into the office with the Matron of the unit and the nurse who was having Kaycee.   They told me they were concerned about me.   Diagnosed me with Post-Natal Depression.   They told me that for a number of weeks nursing staff had been concerned about me because I was there all day and not having a break.   They said that I over handle Kaycee resulting in her getting over tired and that I do not listen to anyone when it comes to Kaycee’s care plan.   OMG can you imagine what must be going through my head right then.  That this was MY FAULT!!!  They made an appointment with a counsellor for me and I left that night feeling crap.  I couldn’t even say good night to Kaycee because I had it in my head that it was my fault she was this bad.  

The next day I came in to find Kaycee back in top room on bipap.   I was again upset because of last night episode but also because they never informed me, I walked into the nursery to find my daughter back in the top room.  

The counsellor had come to speak to me.  I let every feeling emotion and everything out.   I told her everything.   She couldn’t believe what she was hearing.  She told me I didn’t have post natal depression, but that I was simply looking out for Kaycee.  She took loads of details down and told me she was going to make this as an official complaint against the people involved.   I felt so much better after this because I knew I wasn’t going mad.   I knew I didn’t have post natal depression.   I was coping with it all relatively well considering what I had been through the past 6 months.  

The real nightmare begins … February 16th 2011

It was a Wednesday morning about 7am Michael rang me.  He always rang me that time before work as he rings Kaycee in morning to see how she has done overnight.   He told me she wasn’t the best and that overnight she had gone on to bipap (yet again Oldham failed to ring me to notify me) Michael wanted me to go up to just check on her before I made a start on her bedroom ready for Kaycee coming home.   

I jumped out of bed cause my phone rang again, I thought it was Michel forgetting to tell me something but wait …    “SCBU OLDHAM” on my phone screen, that was odd why are Oldham ringing me now, normally I would let it ring a few times but something was telling me to answer quicker, I had a horrible feeling in the pit of my stomach.  I don’t remember much from the conversation just the words “Kaycee is not good, come quick”   I knew this was bad because Oldham never rung us ever to update on phone. 

I remember frantically trying to get back in touch with Michael and when he eventually answered all I could say was “My baby is not good, she needs us!”  I made contact with my parents and I could hardly speak to them the words just wouldn’t come out at all.   I remember getting dressed and thinking, I can’t wear this I look stupid (I had my Pj’s on, Ugg boots and a scruffy top) but I knew wasting time wasn’t an option.    

It had been snowing too which made life so much harder because everything was icy and trying to de-ice a banger was not the easiest or quickest of tasks at the best of times never mind when you need to be there like half an hour ago.   In the end I just cleared the driver’s side of the car and set off.  

I don’t remember much of the car journey up there other than jumping plenty of red lights and Bruno Mars Grenade playing on the radio.   I was crying loads because I just needed to get up there quickly and safely and I was doing none.   I dumped my car on the main road on double yellows and ran up to the unit.  

On arriving at the unit one of the nurses was waiting at the door for me, she opened it and her face said it all.  I just remember feeling very faint and was hysterical screaming “please don’t tell me my baby has left me before I could say bye”.  It was horrible, I remember thinking I need to see her, but do I want to see her.  What am I going to do?  What am I going to tell people? How can this be happening?  Too many things were going round in my head. 

I got up to the room and my eyes were hurting from the tears, my heart was pounding inside.   I felt this hand on my shoulder and voice say “I’m sorry!” … I thought that was it, I thought she has left.   Then the doctor spoke.  Everything she said didn’t really go in.  I just heard “unwell, critical, died, vented”  I just couldn’t take everything in that I was seeing or hearing.

Kaycee didn’t look like my baby, she looked terrible.  Like something you see out of a scary film (only way I can describe it and want to describe it to be honest)   Kaycee had needed her heart starting twice, drugs to keep her sedated as she was very critical and she was vented.   I touched her hand and her oxygen saturations plummeted.  I was told off the doctor not to touch her as she was VERY unstable and the slightest thing could rock the boat in a big way.   By this time Michael had arrived, I hadn’t noticed he had been there for half an hour getting the low down of what has happened.  I felt like I was stood in a room all alone with my poorly baby screaming for help.  It was horrible. 

Kaycee’s consultant explained that she was getting transferred to a hospital where they could deal with her more and put her on a vent that would aid her a bit more.  Her words after that were every parent’s worst nightmare.  “She won’t survive this though, she’s very poorly” she seemed to repeat it and repeat it and told us she has to keep telling us because she knew it wasn’t going in and we needed to prepare for the worse.   I just felt numb.

It took several hours to sort Kaycee out and get her stable enough for transport.  I remember driving down me and Michael in the car, not speaking just in total shock. 

Arriving at Hope

Kaycee had arrived safely and was being sorted out so we couldn’t go in until she was done.   We had loads of nurses keep updating us on what was happening etc.   We had to sit in the little parents room watching and listening out for little hints that she was ok.   We waited in that room for 4 hours before we could see her.  It felt like a lifetime.  

Finally a doctor came out and spoke to us.   He asked us her background and whats been happening over the past few weeks / months, so we told him everything.   Previous to Kaycee getting unwell she had been for an appointment at Royal Manchester Children’s Hospital for her heart and was diagnosed with Moderate to Severe Pulmonary Hypertension.   At the time we didn’t think anything into that we just thought it was because she was early etc.    She got given medicine and we thought that would be ok it would sort itself out.   What we hadn’t realised is that this could be the reason why Kaycee has just had this bad episode.    The doctor took on board what we said and then disappeared.  

We didn’t see anyone again for what felt like ages.  Then another doctor came out.  She explained that she had this PH and that this is why she has had acute respiratory failure resulting in her heart stopping.   She explained that Kaycee was in a very bad place, maximum support and that the next 24-48 hours were important.   She explained that she didn’t think that Kaycee would survive as in babies like her it had never been seen that having such a significant episode they could come back after it.   We were shattered, heartbroken and at the time so naïve still to the situation around us.   Sadly enough we just were grateful that we were out of Oldham.   Obviously we understood that Kaycee was not well at all, because only two weeks ago we were planning for her discharge home, now it felt like we were planning for her funeral.  It was terrible, I just couldn’t stop crying.  

Eventually we were allowed to see her.   I remember walking in and everyone staring, it took me right back to when she was first born.  I felt warm and dizzy.   Michael grabbed my hand and we walked over to Kaycee.  Looking at her was painful because she really did look mega poorly.  Not the cute little girl I had seen just 24 hours ago.   She was shaking, because she was placed on a special ventilator the Oscillator to shake the Co2 out of her body as it was at dangerous levels.   My word I cannot explain how bad it was it was just bad.   I don’t wish this situation on my worst enemy, not in a million years. 

That night we didn’t get much sleep we just went over and over how bad things were and what ifs and how it had got to this point.   I just felt like 5 months had been wiped from under us and here Kaycee was again, struggling to exist.    It was a bad night. 

6am came and the phone rings, we bolted out of bed and ran up the stairs.   Kaycee had needed cardiac massage again.  They had tried to wean her sedation and down, and Kaycee self-exuberated herself (pulled her breathing tube out).  It was another horrible moment, watching her heart rate disappear, oxygen saturations go down.   They managed to sort her out stabilise her.    We again got reminded that she was in a very very bad place.  

A few days passed and Kaycee seemed to look like she was improving.   We were then summoned to a room to be spoken to.   I felt like I was a kid at school again getting in trouble of the head teacher.   I remember sitting in the room facing the doctor with my head down, willing her to stop giving me negative information.    This was one of many talks about Kaycee not going to survive and advising us that maybe turning the machines off would be for the better.   Of course we chose to ignore this and said we wished to carry on her care and do everything possible to help her.   And so the doctor went away and respected our wishes. 

For days we beat ourselves up about it, often sitting in our rooms and crying.   Kaycee had arrived on the Wednesday and the following Tuesday the doctors had grabbed us again and asked us to gather the family up to see her because she didn’t feel she would make it through the night.  So this we did, everyone came.  Everyones eyes red and swollen saying their “byes” to Kaycee.   At this point I had it in my head that my girl wasn’t going to leave me and I kept telling the family everything will be ok, she will be ok.  Everyone thought that I was in denial and that I was setting myself up for a big fall.  But in my heart I knew my baby wasn’t ready to leave me.  

Ten long days passed and no improvement at all.   Kaycee was given a massive dose of steroids as this was the last resort.  If this didn’t work then nothing else would and we would have to sit down with the doctors again and discuss things.   Miraculously they worked and things started improving.   Day 12 Kaycee came off the vent and went back on the Bipap.   It was so nice to see my baby girl stare back at me.  I don’t think I left her for the rest of that day.   

Long stay at Hope

When we arrived at Hope Kaycee was 5 months old.  So no longer was classed as a neonate.   So ideally she should have been transported to PICU when she initially deteriorated at Oldham.   I remember one of the nurses constantly asking us when is Kaycee getting transported back.   Of course after everything we went through at Oldham I did not want to go back to that place at all.   I was too scared to even show my face in that place never mind put my daughter’s life back in their care.    We spoke to the doctors and it was agreed that with everything Kaycee had been through that they would get her back to where she was before the episode and then speak about it again.  

In March Kaycee threatened to be nearly vented again, due to blowing up with fluid.   She managed on bipap and the tiny blip just caused her to be set back a little.   At this point loads of other stuff had gone on (too much for me to go into detail about and to be honest it angers me too much)  and Hope had decided to adopt Kaycee under their care and she was allowed to be discharged from Salford.   This meant never going back to Oldham at all.  We obviously were happy about this.    Eventually in April (Easter) Kaycee finally came off the cpap and was in oxygen all day and night.   This was the first time EVER Kaycee had been this well and again a discharge meeting was set up for home!  This time everything was in place and everything was sorted properly.  Even to the point of oxygen being fitted in the house and her bedroom being complete.  

Kaycee’s date was set for going home 20^th May 2011.  Which meant my little girl would be going home at 8 months old.   This meant that sleep studies had to be done to determine what oxygen she was going to be prescribed with at home.  This was a nightmare because didn’t doctors had different requirements.  So it took a good 4 weeks of traces to determine this.  Finally the right prescription of oxygen was agreed and Kaycee was all set to go home on the 20^th.  Which was 4 days away.   We were finally allowed to room in downstairs with her.    This was amazing.   I don’t think me and Michael slept all night.   We were so excited to have reached this point, considering how bad Kaycee was just 4 months back.  We were in heaven.

Knew it was to go to be true.

Sunday morning came and Kaycee had a very unsettled night.   Michael picked her out of the cot that morning and she was sick.   He lay her next to him and said to me “She’s not right”.  I remember going mad at him saying that he can’t be scared because we are going home.   He was adamant that he wasn’t scared, and that Kaycee was unwell.   In a tant I took Kaycee upstairs and told the nurses Michael was being a mard and that he was getting panicky about taking her home.   The nurses checked Kaycee over and reassured Michael that Kaycee was ok and to try and put February out of minds.  

Reassured we left Kaycee with the nurses as we had to pack up downstairs and do a quick run home with our stuff and get things more straight back there.

Back home we unpacked and did the last bits to Kaycee’s room.   We waited in for the Oxygen guy to come and show us how to use it etc.   We decided after that, we would go Tesco and get a bit of a shop in at home because after all we hadn’t been home for 8 months so we had nothing in and we planned on doing nothing when we got home so we needed food.

We piled the trolley up and then Michael told me just to check on Kaycee.   This was something we rarely did whilst she was at Hope because the staff were pretty good and we had regained our trust in them.  

I rung Room 3 up as she was in the “nursery” ready for home literally the next day.   When I rung I was put on hold which I found odd, because generally in room 3 the room was only nursed with one nurse due to all the babies being ready for home so the nurse could look after 3.   I just thought that she was busy.   The next conversation was horrible. 

I remember standing there and asking the nurse are you sure, its Kaycee’s mum your talking to.   Nope the nurse had the right mum.    She repeated again what she said “I was feeding Kaycee her tube feed and she went blue …”  Nothing else sunk in what she said.   I just remember putting the phone down telling Michael we had to go and dumping the trolley.   We were in Oldham. Kaycee was in Salford.   Yet again I found myself back to where I was in February driving like a complete moron with Februarys antics running wild in my head.   I just blamed myself all the way back for leaving her. 

This time I didn’t feel scared I knew she was in the right place, due to how well she had come on.   On arriving back we got by Kaycee’s bed and her consultant from Oldham was looking after her.   She told us that Kaycee went blue, and because she was due for going home her monitor was taken off her and when they put it on her saturations were very low and took a while to come up.   She asked us if she had been unwell over the past few days and my first answer was no.  Then I remembered what Michael had said in the morning.  I physically felt sick.   I couldn’t look him in the face at all.   He knew that our girl wasn’t well and I was so set on going home I just ignored his plea.   What have I done!!  

To be fair to Kaycee’s consultant she tried everything, she looked after her all day when she had other patients.   She ensured that she was settled, saturating right and everything and she never left the hospital until she was.   She had spoken to us and told us the options.  One being the vent if she gets to the point where she looks like she will need it.   This obviously to us was not an option we wanted to go down. 

Monday morning came, the day we was suppose to be rejoicing her finaly day in sCBU.   Instead we sat besides her bed watching her get more poorly on cpap.   She was moved to a bigger space and put onto the bipap which helps her breathe more.  

The next few days were horrible and we personally think with better care the next part of her life could have been avoided despite what people state.   I aint going to go into detail because this upsets me more than her massive episode.   The conversations we had and how it happened will haunt me forever.  

Goodbye Discharge Hello Ventilator …

Wednesday came and Kaycee was very very bad.  The night staff rung me to come upstairs and see if I could settle Kaycee.  We got upstairs and the night staff said that a doctor was coming in early to speak to us.   What she said to us was not what we wanted to hear.   We were in shock.  Yet again our baby girl was critical. 

We found ourselves sat back in the parent’s room where we had waited ever so patient for 4 hours back in February asking the same questions, going over events in her life and crying.  

Casually walking past was Kaycee’s consultant.   She was surprised to see us and joked “We not got rid of you guys yet” … She didn’t need telling as she could tell by our faces.  Her face dropped and she raced off.   The next thing the door flew open and she sat by us.  She held my hand and said “its not good, its not good its not good its not good” … I looked at her all confused and I could see her eyes were filling.   She explained that Kaycee’s heart rate was very low and so were her oxygen saturations.  I froze.   I actually couldn’t take it in what she was saying.    Then the nurse came in who had her that morning.  She was trying to keep compose but when she seen us she too burst into tears and told us the news we had been dreading to hear.   She told us Kaycee wasn’t good, and it didn’t look good.  She couldn’t talk.  We all sat there and Kaycee’s consultant was praying.  It was silent.  A deadly silence that no one seemed to want to break.  Then another doctor came to the door and said “Kaycee’s ok, that was a bit rocky but she is back and stable on the vent”.   We all looked at each other and I just burst into tears.   

Over the next few days we had to deal with seeing parents we had said bye to giving us their regards and how sorry they were to see us back where we started.   By this time 5 months on everyone knew us, all the staff were close to us and everyone loved Kaycee.  Everyone was saddened by our story so far.   I just felt like we were never going to achieve our goal and get her home.   I just shut everyone out.   We had worked so hard to get her to the home stage and then back 5 months we go.  I had so much anger inside me for events that had happened that we never acted upon at the time.  

Kaycee did really well this time on the vent she only needed it for 7 days.    She recovered very well considering how poorly she was.   This time she didn’t need the steroids to get her off the vent.    The doctor told us that he had never heard of any baby to do what Kaycee had just done.    3 weeks passed and she went from Bipap to CPap to being off her onto her oxygen 24/7.      She then had her dreaded sleep studies and they were better than the previous ones.   The oxygen was agreed and the doctors told us we could take her home Monday.   Again we were told Kaycee could room in with us and get used to her downstairs.   Due to the last time we were a bit scared.   The nurse came over and told us that they had spoke to the doctors and the have agreed that we didn’t need to room in with her and that we could take her home THE NEXT DAY!!!!