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!!!!   

285 days and finally the finishing post in sight

Discharge Day – FINALLY

We couldn’t believe it when we got up on the morning of 15^th June 2010.  Kaycee was 9 ½ months old.   We hadn’t planned for any of this but we packed the car up and got things sorted.  We went upstairs and said our goodbyes to the staff, doctors, parents etc.   We were so scared but yet excited to finally be at this stage in her life.  A stage at many points of her SCBU stay were threatened by illness and her being so critical.    I thought I would have been in floods of tears leaving the unit.  After all they had saved my daughter’s life and made this day happen.  

I wasn’t at all upset to leave the unit.  One of our favourite nurses was upset; she was a fab nurse – missed very much.    I was relieved to finally get out of hospital as a family.   Loading Kaycee in the car was hilarious, the nursing staff weren’t allowed to help get Kaycee into the car due to policies.  So trying to fasten a baby seat in a car was a new thing to us and was bloody complicated.   We were that flustered & nervous it took us ages.  

Finally we were set to go.   We drove off and I remember thinking, stop panicking its going to fine.   Michael sat in the back with Kaycee and never once took his eyes off her.   Looking back if someone would have filmed us it would be a huge hit on u tube.   I drove like a learner, which probably made me more nervous and the possibly more dangerous.    

We arrived home, the journey took longer than usual due to me driving extra careful.    We took Kaycee in her home for the first time, placed her car seat on the floor and took a deep breathe.    I couldn’t believe that was it.  Kaycee was no longer in hospital.   Now what …

Home

With Kaycee being our first baby and all the plans you have whilst pregnant of how you will cope and how you will do this just went out of the window.   We didn’t have a set regime in place and if we did we didn’t follow it from hospital.   Within hours of being home it felt right and the 9 ½ months we spent on SCBU seemed miles away.   Kaycee on the other hand loved her new house.  With being a bit older you could see the difference in her, it was like she had been given a new lease of life.   She was more interactive.   When we put the TV on, wow it was like she had won the lottery.   She found it amazing lying there on the rug.   

The first night was hard.   Kaycee was too big for a moses basket and her bedroom was all done and the cot was in there.   So we decided we would camp out in Kaycee’s room.   We got all our bedding and made a bed on the floor and put her in bed.      New surroundings got the better of Kaycee and she wasn’t impressed with the massive change in her life.  We had a very restless night. 

A few days passed and Kaycee seemed to settle.   We got ourselves in a little routine and was finding it pretty straight forward.      We loved our little family life at home, it was amazing.   

Things soon felt normal again and off Michael went back to work.

Something inside screaming get help.

Kaycee was home for about 4 weeks straight and then she seemed to get a bit snuffly.  Obviously this was a sign she had caught a bug or something and from past experience we were a bit anxious to let her ride it out.    We have help from the Community Nurse due to her being on home oxygen.   So I rang them and asked if they could bob round just for a fresh pair of eyes point of view. 

As soon as they came they knew she wasn’t right.  They put her oxygen saturations monitor on and she was sitting low 80’s.   I could feel my body tense up and I felt sick.     The nurses told me that they would need to get her to the hospital.    The rung the ambulance because she is on the direct admission list the ambulance knows of Kaycee and knows to come ASAP. 

On arriving at the hospital we were directed straight to a ward.   She was admitted into a cubicle and seen by the doctors.   All the doctors knew Kaycee because of neonates so that was probably the only advantage of being on this ward.   It was hard to adjust to how they worked because on a neonatal unit they were closely watched.  Here you were left to defend for yourself, well not that extreme.  

Kaycee had loads of tests done, poked all day and then they finally decided she had bronchiolitis.  As we have learnt over the months every baby admitted to Oldham has this.   At the time we were heartbroken.  She had already been through so much and to top it off here we was back in OLDHAM.   All the memories from that horrible day were hanging over me.    

Kaycee’s oxygen went up sky high but they just put a mask on her, she tolerated this quite well.   She was treated with antibiotics and within the week stay she was stable and back in her normal amount of oxygen to go home.   So off we back went home.   

10 days passed and Kaycee seemed to be back to her normal self.  

Another date inscribed in my mind

Then one night the alarm on Kaycee’s monitor went off and her saturations were low again.   Within minutes of this happening we had made the decision to call the ambulance and get her looked at.   The ambulance again came within minutes and Kaycee was transferred back to Oldham.    As we arrived Kaycee needed more oxygen and a mask was placed on her face again.  

Again she was diagnosed with bronchiolitis.   We thought another week and she would be fine. 

Her consultant who had been with her since Scbu days came up to see her and prescribed her a nebuliser to help move some of the rubbish on her lungs.   Kaycee had this but then had a really bad reaction to it.    She went floppy and her saturations went low.  

At the time Michael was with her as I had nipped home by strict orders of Kaycee’s consultant to get a long relaxing bath and try and relax a bit.   That never happened as I got to the corner of our street and pulled up because my phone was ringing.   I couldn’t believe that I was in this situation again.   I needed to be at the hospital within minutes and I found myself back to the situation where I didn’t feel I was making much progress on the journey just making it more dangerous for me and other drivers.  

When I arrived at the hospital Kaycee had been sorted out but was in loads of oxygen.   Then the dreaded news none of us wanted to hear. 

Kaycee’s consultant had been in talks with the doctors down at Central Manchester Children’s Hospital.   They have decided that Kaycee needs additional care to what she was getting.   She was to be transferred down to that hospital.   Initially we thought this will be good because she will be looked at properly and the added bonus we were getting out of Oldham.    Then the news we didn’t want to hear … BUT (and a massive BUT) she will have to be vented to get her down there safely.  

Journey begins in PICU

At Oldham Kaycee had a nebuliser which totally knocked her off and dropped her sats massively.  It was scary.   She went all floppy and funny coloured.   From what was going to be a controlled event turned into a nightmare.   All the nurses were flapping.  Kaycee got moved to another room which was classed as a high dependency room.   Oldham only had one of these because they rarely came across babies like Kaycee.   We knew this on previous admission and due to her horrible stay in SCBU.   But being forgiving parents we trusted them with our daughters life again.    This was starting to wear very thin though as the more they were doing to Kaycee the more she got distressed.      The transport had been booked but they weren’t able to get to Kaycee until 7pm.   This meant that for the next 4 hours Kaycee would have to be tubed, sedated and kept stable.  

Obviously we were at Oldham and nothing is ever simple.   We had to kiss Kaycee and go out of the room.  It was like torture for us.  All I wanted to do was hold my baby and stop her being so upset whilst the doctors poked and prodded at her.   They thought Kaycee had been on the vent for 171 days which in fact it was nothing like that at all, possibly only 56 or something so pety to what they were stating so they were scared to put her on the vent which was even worse because they decided for the next 3 hours they would “bag her” (put an oxygen mask over her face and give her breathes) It was unbelievable.    

The transport finally arrived at 8pm that evening.   This had been going on since 2pm.   Was a nightmare for us and obviously for Kaycee.   It took another 4 hours for them to stable Kaycee and get her sorted for transport.   This was the first time at midnight that we were able to see our gorgeous girl.   She didn’t look the best, in fact now when I look at the picture of her from that day I see how poorly she actually was.

The ambulance set off and we went just before them.    We discussed the events in the car and reassured each other that everything will be fine.   We were mortified that Oldham had let us down again!   I think we both agree that we will never put Kaycee’s life in their hands EVER again.  

On arriving at Central Manchester Children’s Hospital it was scary walking down the long corridor of PICU entrance.   Then all of a sudden the door flew open and they were running in with Kaycee.   She had taken a massive turn for the worse on the journey down and was having to be “bagged” into PICU.     The nurse told us to sit in the parent’s room and wait.  

Again the wait for agonising.   It wasn’t until 2:30am that we actually got to see Kaycee.   It was frightening. Nothing like the SCBU days, it was far much bigger and scarier and so much medical equipment.   I couldn’t believe that it was all for Kaycee.   I was in shock and shaken from the previous events.   We were shattered and needed to get some sleep.   Kaycee was stable that was the main thing.  

The next thing was to correct what Oldham had told Central Manchester because their hand over on Kaycee was very shocking, nothing was true well more like Chinese whispers which was quite scary.  It’s just a good job we were there to tell them the story of Kaycee’s life.  

Quick Admissions

We were home for a week and everything was going ok.   Then one morning of 16^th September 2011, I noticed Kaycee didn’t look the best.  I said to Michael that we could go on a quick road trip down to Manchester and present ourselves at A&E there.   We both didn’t trust Oldham not after all that’s happened there.   So we decided because she was stable enough we would put her in the car and drive to A&E.  Don’t get me wrong if Kaycee needed 999 I would never put her life at risk and would let the ambulance take her to Oldham if she needed it.   We have always agreed that.   Just at times when we can catch her before she crashes we rather admit her into Manchester as all the teams are under one roof and after all they do know her.  

Upon arriving at A&E because Kaycee was only an inpatient with a PICU stay the week before they admitted her to the ward straight away.  She was x-rayed and bloods taken upon admission.    She was diagnosed with aspirated pneumonia.  They thought because she had started taking interest to her food again that it might have gone down the wrong hole, and because her lungs are poorly some had gone onto them.   Kaycee in herself was well, so they gave her an antibiotic for aspirating, and a two night stay we were off home again. 

Although she had done this and was being treated she wasn’t 100% at home, and we were getting a bit twitchy and questioning whether she should have come home.   She didn’t seem to unwell to warrant another drive to Manchester so we just left it and pushed it to the back of our mind.   She started to get a bit snotty, but nothing that an oxygen dependant baby wouldn’t normally be like.    Again she went off her food and because she was teething it was easy to blame that and to be honest if you had just met Kaycee you would say she had all the signs of a typical teething baby.   So we just gave her antibiotics and the usual teething things.   A week passed and she wasn’t improving.  

31^st September, I decided to take her back to Manchester.   Michael was working so his mum came down with me so I wasn’t on my own in the car.   Again Kaycee got admitted to a ward.   She only needed a bit of suction as the snot in her nose had got hard with the oxygen (I know that sounds disgusting –sorry)  So in the morning she was discharged.    A lovely quick admission.

That day she was perfect, back to her happy self.   It was the morning of Corrie’s first anniversary. We have split the girls days, So Kaycee obviously has her birth date (2^nd September) as her day and Corrie has the day we lay her to rest (1^st October) purely just so its not taking Kaycee’s birthday away and it’s a way of making sure Corrie isn’t forgotten too.  

On leaving the hospital we decided that we can’t always wrap Kaycee up in cotton wool, so we decided to go out for pub lunch.   We went out and Kaycee’s first proper outing.  It was fantastic and felt like we were a normal family.  

10th October 2010

Leading up to the 10^th October as said before Kaycee wasn’t 100%.   She had to have the flu jab with it being her first proper winter in the community.  She was also due her 12months immunisations and had an injection to protect her from RSV (bronchiolitis).  So within the three weeks of being home she had one jab a week.   To add to them jabs she was teething.  This got too much for her and she got a chest infection.   The Sunday evening she went to sleep and was fine then in the early hours she started to work a little bit harder and dropped her sats in the night.   After a quick discussion with Michael we decided she was ok for a drive down to Manchester as we had a saturations monitor and to be honest once she was awake and dressed she was more perky.    So off we went in the car again.    On the way down Kaycee was smiling and looking at the lights.  She had never been out in the evening before so this was a new thing.   We had the monitor on her and although she was in 2 litres of oxygen we knew she was ok and safe so we just carried on past Oldham hospital onto the motorway to Manchester.  

On arriving, we got Kaycee in the pram and she looked better than she had over the past few weeks.   We was joking and wondering whether to take home because she actually looked fine, and we didn’t want to waste the nurses and doctors time just to be sent home the day after.    We decided that we would get her looked at just to make sure.

Once we were in A&E, we waited for the nurse to assess Kaycee.  We went into the side room and I took Kaycee’s coat off.   Within seconds she was screaming and crying.  Kaycee NEVER cries, I know that sounds silly but she doesn’t unless something is up.   I looked at her and she was BLUE.   The nurse panicked and we had to run through to the High Dependency part of A&E which was just behind the room we were in.   A monitor was put on Kaycee and she was saturating at 63, which is obviously not good.   Kaycee was very distressed and upset as she wasn’t getting enough oxygen.   She was placed on a mask and she calmed down.    The doctor was rushed down and he took bloods, put a canula in her head and got in contact with her consultant.     Because Kaycee was Kaycee they decided to admit her and this time she was admitted to PICU with the plan to put her on CPAP that helps her breath.   

We were transferred to PICU later that morning.   The staff welcomed us back, in the nicest way possible.    We just thought she would need a bit of extra support get over what she had and then get put back on a ward.    We couldn’t have been more wrong.

Kaycee managed to sort herself out once she had calmed down and put on the machine, her breathing calmed down and everything looked a bit better.    48 hours passed and they were talks of Kaycee being moved to High Dependency as she was classed as “Stable”.    The next few hours passed and things weren’t looking the best.   Kaycee’s oxygen requirements went up to 100% and she was struggling again.    Then all of sudden everyone was running around and within the matter of 15 minutes a tube was being placed down Kaycee’s throat and she was back on the vent.    Again backwards we went, what felt like a 100 steps. 

We felt deflated seeing Kaycee like this again.   How many more times could one little girl do this.   To make matters worse every day since arriving on PICU the doctors had dragged us in the office for what we called “doom chats”.   Kaycee won’t survive written across their heads.   They told us with babies like Kaycee what the general trend is her PICU admissions will become more frequent as the winter progresses until eventually us as the parents have had enough and we want to let her go.  I remember thinking in my head are you for real, when “we” have had enough?   How could they talk about my baby in this manner.   I don’t think so this is my baby and my baby fights and continuously proves the doctors wrong.   Fair enough if one day she’s given her all and we know in our hearts that she has had enough then fair enough but we believe as parents if Kaycee fights and gets herself well then that is obvious to us that she wants to be here. 

One of the doctors had arranged a meeting for us with a Chronic Lung Disease Specialist, initially we thought this would benefit us loads because we would be able to ask questions that we have never wanted to ask for ages and see if we could shed a bit more light on this disease that our daughter has.    We went to the “doom room” for the chat.   When we got in the room the lady introduced herself.   We couldn’t believe what we were hearing.  It was a lady from Palative Care.   I sat there and thought to myself let me see what she has to say, because if she starts talking about my girl not being well and the future I would walk out, as we had only just come out of a doom chat.   She started talking and her first question was “Have you thought about Kaycee’s funeral arrangements?” … OMG I couldn’t believe what she had just said, I asked her why she was asking and she told me that she isn’t going to survive.    I remember going mad, I asked her if she was god.  I gave her a right dressing down and said she had no right to be having this conversation with us when my little girl was fighting for her life in there.   We stayed and put her to rights.   To be honest I don’t think she had been given the correct information from the doctors and even she was shocked of how we thought about things.   It didn’t stop us being angry and upset though.   Even the nurses couldn’t believe that this lady had come talking to us as they all knew that Kaycee wasn’t well but she was an ex prem and it was expected that they have a rocky time during the winter, especially if it is their first winter.  

Kaycee did better this time round coming off the vent.  To the point where all the doctors were surprised.   They didn’t believe that the flu jab and all the other jabs had initially knocked her off and then on top she got chesty.   Kaycee also struggles with fluid retention due to her hole she has in her heart so all this doesn’t help Kaycee at all.    The doctors decided not to send her over to High Dependency due to the fact she was due her 2^nd part of her flu jab.   Kaycee had her jab and again it knocked her off again.   Finally the doctors could see what we had been saying and agreed she obviously doesn’t like jabs.