A long few days

On the Tuesday morning some how Darren and I slept through until 8:40! We looked at our phones and were inundated with texts from friends and family asking how Elsie's night had gone. We sniggered between ourselves at how terrible we both were at sleeping in so late and that we had better rush to the TM Unit because the nurses will think we were awful! We got there and it was a new nurse who we hadn't met. She was so lovely and we said sorry we were so late and that we had overslept. She smiled at us and said we must have needed it.  She hit the nail on the head.  We did.  After no proper sleep because of worry it was so reassuring to know Elsie had had the surgery she needed and yes, she was still very poorly but all her problems had either been addressed or were in the pipeline to be.  First thing I noticed was the dreaded longline had been successfully put in her arm.  They must have done it overnight when I wasn't around and waiting to sit with her.  I was relieved that they eventually got it in though. The Drs, Registrars and Paediatricians were doing their walk around and decided to start taking her out of the coma early!  I was really shocked as we weren't expecting that until late Wednesday! I was pleased, of course.  However in all honesty, I was a little apprehensive as I didn't want her to be rushed.  The Drs explained that the repair on the oesophagus hadn't been too difficult so she didn't have to be "dead still" for quite so long!  It was lovely to hear.  We sat with her for a bit then we went back to our room and showered etc.  I needed clothes and things and being so close to the town It was rude not to go and do a bit of shopping.  Yes, my child was in hospital, yes, I was worried but there really wasn't a better distraction.  Everybody deals with scenarios differently.  At the time Elsie was in a coma, I couldn't do anything for her so the least I could do was do a little something for myself.  To be fair also, we ended up buying more stuff for Elsie than we did for me.

I haven't spoken to another special care mum about it, but people's expectations and judgements were really high up in my mind at this point.  I don't know why but I was just very conscious of people's opinions.  Yes I went shopping, yes my husband and I went out for evening meals, I even went and got my hair highlighted all whilst Elsie was in her coma.  I didn't care any less that my child was poorly.  But I knew she was being looked after and there was nothing I could do for her at that point apart from express my milk.  Living in the Ronald MacDonald house was great and the charity is amazing but sometimes you just have to get away from the hospital walls and make the best of this horrible temporary life you are living.  I suppose it was my escapism. 

On the Wednesday afternoon Elsie was awake, just! The nurse showed us on the machine how to see which breaths Elsie was doing for herself and which ones she needed the machine to take over.  It turned into a bit of a game seeing how long Elsie could cope by herself, by the Thursday morning she was totally off of the ventilator and just had oxygen in her nostrils.  They kept on lowering the oxygen but she was getting very tired and struggling to keep her levels up so they had to keep raising the oxygen flow going to her.  But she was doing really well.  At this point too they were reducing her pain killers. She was awake and aware.  She could stare at me which was lovely. A Dr came along to do her Kidney, Liver and brain scan! He covered her in jelly. It was in her hair and everything.  Once he had told me all the scans looked good I couldn't wait to get all the jelly off of her! Her hair looked so gungey and horrid I couldn't not wait to get her home and give her a good bath! 

The next task for the day was Elsie's contrast study! This was big! If it went well, Elsie could have her chest drain removed as it meant the op had been completely successful and we could have a cuddle again!  At lunchtime Elsie went down for her scan! She had to swallow dye and make sure none of it leaked out of her oesophagus. She was bought back to us in the TM unit where they said it had all been successful. Yay! A lovely nurse said she would do the procedure to removed the chest drain and then I could haven my cuddle!  Darren and I helped her with the procedure.  Keeping Elsie on her side and keeping her arms away from the area. It was so nice to have been part of that process!  The drain was removed and then it was my turn for a cuddle!  It was lovely!  But again, in a soap it would have been a meltdown moment.  But it wasn't for me. It was a target hit! As of Monday I hadn't doubted that we would have got to the cuddle stage!  Elsie had proved she was a fighter and I knew she smash through and exceed every expectiation.  And she did!  Whilst I was getting my cuddle with Elsie a lot of Drs came over to speak to us.  They quite literally said "she's a waste of space in here and as soon as a bed is available in high dependency we shall move her."  It was the only time I think I will ever be pleased to hear my child being called a waste of space.  I loved my cuddle and it lasted for hours.  We were on a positive road now and I was excited for what could happen on the Saturday 

The start of her recovery.

Darren and I got back to the hospital at about 16:30 and spot on 17:00 one of the surgeon's came and knocked on the door of our room. He told us that Elsie was back in the Intensive care unit and that the operation had gone well.  I really really wanted to see her however in the back of my mind I knew that what I was going to see wasn't going to be nice. We thanked the surgeon and said that we would walk round soon to see her.

We walked round together and I was right I wasn't ever going to be prepared for what I saw.  Not because of the tubes, or the wires, but the bonnet.  Elsie had a bonnet on that obviously had a purpose.  It had plastic going from one side of her face to the other across her mouth.  It was used to support the tube that was connected to her life support machine.  However, the way it was so tight to her face just completely threw me and that was what I struggled with the most.  Once I got over that, looking at Elsie's eyes was very strange.  We were told that she would be asleep as they were going to be paralysing her after her anaesthetic so that her body didn't move at all during recovery.  Well she was very awake. Glazed, but awake.  I didn't like this one bit.  She was able to look at me but couldn't move. It was all very normal and the nurses explained to me what exactly was going on with her body at that time.  First off, she was pretty much a newborn who was waking up from an anaesthetic, however at that point they were also  starting her on the pain killer morphine so she would have been having extremely strange sensations at that point too.  Then to top it all off whilst she is experiencing all of this she was being paralysed and having a machine help her breathe (once she was completely paralysed it would take over)

I knew it was normal but it was upsetting seeing Elsie's eyes open and close as if she was fighting it, so I thought I had seen she was ok but we were clearly distracting her so we went to our room to let her do what her body needed her to do. 

We both made a few phone calls. We had only really told close friends and relatives as it had all been so quick.  But the information we had told people was very limited and we had lost track of who we had told what.  Everyone sent their love and offered help in all sorts of ways which was lovely. 

At about 20:00 Darren and I went back to see Elsie and all the machines and medication had worked their magic as she was 100% asleep.  It was such a relief to not see her looking at me, which sounds awful.  But I knew now that she had had what she needed.  All the time she had been crying and needing me previous to this I couldn't do anything for her.  Now I knew that the next time she would be looking at me would be when she is better and everyone and everything is a lot more relaxed.  The night staff were on at this point and the lady said to us that over the next few days Elsie would have whoever is in charge on the shift looking after her and also told us what was the plan of action for her.  It was Sunday and they planned to start waking her up Wednesday morning and then hopefully I would be able to hold her again by Friday. It was nice to hear that as that suddenly gave us something to look forward to and aim for.  When we got to about 22:00 Darren and I decided to go to sleep as we had to sort lots of stuff out on the Monday. 

It wasn't a day to be sitting at Elsie's bedside as she was totally asleep and unconscious and it made no difference to her whether we were there or not.  So Darren and his dad moved all of our stuff and sorted our room in the Ronald McDonald house in the hospital.  I on the other hand thought I would go back to the hospital where I had had Elsie and get myself checked.  When I had had Elsie I was told that I needed to have my blood pressure checked every two days for two weeks.  This obviously hadn't and wasn't going to happen so I took the opportunity to go there and get everything done as I may not have had another chance in a while. I got to the ward and said I wanted to be checked and they were lovely.  They had all heard about Elsie through the grapevine and couldn't have done enough for me.  They put me in my own room, whilst a midwife went off to find my notes and a BP machine.  Next thing I know a lady came in asking me what I wanted for lunch.

"Oh no, sorry I'm only in quickly just to get my BP checked." I said to her thinking she thought I was in there because I was waiting to go into labour or something.

"No no the midwife has sent me in to offer you a lunch.  You need someone to look after you so the least we can do is offer you a cup of tea and some lunch."

I was so touched and as much as the hospital food was something I really didn't need it was nice to have a sit on my own in a quiet room.  Something I hadn't had for a while.  The midwife then took my blood pressure and unsurprisingly it was high so she advised me to come back on the Wednesday just to be rechecked.  She was very flexible about it but they just wanted to make sure that I wasn't going to get poorly aswell.

When I got back to Brighton hospital that evening we had been moved to our new room in the R McDonald house.  It was perfect and just what we needed.  That evening Darren popped home about six and I went to go and sit with Elsie.  It's amazing when you are not at the hospital how much you want to be there, even if it is to sit with a baby who quite literally isn't doing anything.  To say I picked my timing badly was an understatement.  There was a Dr and the usual nurse that monitors Elsie there preparing for something.  The nurse came over to me and said we are going to start a procedure to put a longline into Elsie's right arm so that she can get nutrients whilst she isn't having anything to her stomach.  You are more than welcome to stay here for that. I did think about going as there probably wasn't any need for me to be there but I thought I would stay just to be a part of Elsie's recovery and be there if anything happened.  They put a massive light on over Elsie and then covered her with a big green sheet making sure it was all sterile.  All that was visible now was her little right arm.  Then what happened next was not nice.  He was pulling at her arm, squeezing and stretching it like child would to their Stretch Armstrong.   Only Elsie wasn't his toy, she was my child and I was watching her all over again being pulled and poked and suffering.  I looked under the green sheet which I really shouldn't have and her eyes were rolling so she was feeling something.  I don't know how or what but she was aware of something.  This was when I felt terrible.  The Dr was struggling to find a vein and was pulling at Elsie so hard it appeared to me that he was hurting her.  I could feel myself getting hotter and hotter as I thought, does she really need this longline for nutrients? Can they not just try again tomorrow?  The nurse could see I was getting so upset and she said "are you ok?"  This nurse was so lovely and I completely knew she had Elsie's best interest.  I had to get up and leave because what I thought was going to be a little procedure looked not much less that torture for anyone let alone a baby.  The nurse followed me out of the unit to check I was ok and I had quite a cry.  I didn't want her there with me though I wanted her back with Elsie making sure she was ok.  As I looked back over to where Elsie was she still had the Dr yanking at her and doing what he had to do. I just asked the nurse to come and get me when it was done as it was only meant to take ten minutes.  I thought I would just go and wait at the lounge area where our room used to be, at this point a friend of mine called me from Dubai so I filled her in on the story and it was just what I needed at the time to take my mind off it all. One hour later the nurse still hasn't come to get me so I thought she must have forgotten. I confidently walked into special care and Elsie was still being worked on.  I couldn't understand, what they said was going to take ten minutes was still happening around an hour and half later!  I went upto the nurse who said they had done many attempts to get in the longline and that they were just finishing off and going to put this time down as unsuccessful.  I was nothing but relieved!  I don't know why because I know it had to happen but I think the fact that Darren had gone home and wasn't around made it even worse.   When they had finished and cleaned up I sat with Elsie for a bit until Darren was back and then we both went back to our room so we could get up early and see how she was the following morning.

So Elsie's first day of recovery had been pretty none eventful apart from me having my check up, Us being moved into the McDonald house and Elsie being an unsuccessful stretch Armstrong toy for one of the Drs! As far as I was concerned it was four more sleeps until I got my cuddle!

Our new place on the seafront

We drove over to Brighton hospital after my mum and dad had come round with a Shepherds Pie just to make sure we had eaten something.  Whilst we were quickly eating I had a phone call from the ambulance driver saying that they had just arrived at Brighton with Elsie and that they were handing over and transferring her. Then they were going to begin scans.  

Darren and I gathered a sports bag of clothes and made our way to the hospital. My parents decided to follow us over in the car.  To see Elsie more comfortable, to make sure we got there, I'm not totally sure but I was glad they did.  Darren was driving and ten minutes into our journey he got angry and upset. 

"I nearly killed her, I could have killed my daughter" he said

"What?" I honestly could not believe what he was saying. I didn't know whether to be angry for him even uttering those words or to reassure him. 

"I doubted you when you wanted to go to the hospital, I just thought it was tongue tie. I didn't think it would be this serious." He was so frustrated.

"No Darren" I said.  "If you had disagreed with me I would have taken Elsie to the hospital on my own whether you thought I should or not.  Now stop being stupid and concentrate on the driving."

Writing it now, I feel I was slightly harsh. However, my instincts were telling me I can either fight or flight. I'd worked so hard so far so I am not crumbling now, so I chose to fight.  My daughter was fighting for her life so the least I can do is man up and get on with this far from ideal situation.

We got to Brighton and eventually made it to the Trevor Mann unit where the Drs and nurses were still adjusting her suction and oxygen.  But they were also looking at a computer screen. They were still doing the scans. Did I want to see any of this? I knew I was only going to stand there watching the faces of the multiple Drs and nurses standing watching.

"We're all finished now" The Dr said. 

"Sorry, finished what?" I asked

"We had to do scans on her lungs, heart and stomach.  They are the three areas we need to check tonight before we can risk the operation.  The kidneys and liver can wait until after the op. See this is her stomach now."

I looked at the screen and all I could see was what can only be described as a black and white photo of a washing up bowl.  It was just full of bubbles! Where all her tubes were confused, she had air that was coming down her trachea going into her stomach as well as her lungs.  Her lungs were also full of stomach acid. It was all starting to make sense.  This would all explain why her oxygen was low and a multitude of other things.  It was all starting to get a bit much so I thought I would go out to the visitors lounge and fill mum and dad in then send them home after they'd popped in to see Elsie. It was about midnight by this time.  When I was walking back to the unit Darren was talking to the paediatric surgeon on call.  I walked in at the wrong point.

"Your daughter is extremely weak and poorly.  Tomorrow she has to have life saving surgery."

That was it. I'd held it together long enough.  They were the words to break me.  To be fair, I think they would break most humane individuals.  Then suddenly my mind went into immediate over drive.  What was he getting at?  Why was he telling me she was weak? Did he think I'd done something wrong? Was he saying I hadn't tried enough?  Should I have known that this was going to happen? Bottom line is I felt it a personal attack.  

I weeped back at him "Please don't think we thought this was normal, we did take her to hospital and we were sent home. I've known something was wrong but there's always been a reason why..."  I had to get it out there I didn't know how this worked.  Was he saying other good parents would have known and did he think Elsie would be better off without us as her parents. All-sorts were going through my mind.  

He said reassuringly, "I know and she's here now and getting stabilised. Now please go and have a good nights sleep because tomorrow is going to be a very busy day for you all."

Of course, I totally ignored him and went back to see Elsie.  He's just told me my daughter, that I nurtured (badly clearly) in my tummy for nine months is having emergency surgery tomorrow. I'm going to go in there and not leave her side...that lasted ten minutes.  The nurse said to me to go to bed. I knew I was in the way as they were still quite busy with her but also actually sitting with a new born baby isn't as exciting as you would think.  She really was just laying there asleep, coping.  It wasn't  exactly the circumstances in which you stare at your baby adoringly.  It was more staring at her tormenting myself that she was actually broken and had to be fixed tomorrow. Each minute was just edging her ever closer to her big operation.

Darren and I went to our room that they provided in the Trevor Mann unit at weekends.  On the Monday we were able to sort out getting a room in the Ronald McDonald charity.  (And if I don't say it again. Fantastic charity, I will never feel guilty for having my BigMac and chips again)

I got my pump ready next to the bed as at 2am I was due to express.  I couldn't do much for Elsie at this point, but what I could do was make sure she had plenty of milk to eat when she was able to.  Darren and I laid in bed. I cried a lot, Darren tried not to. Then I thought, Ok this is a pants situation. I can cry and make myself more tired but, what good was crying going to do? It wasn't going to make my daughter any better.  I thought about my support worker saying this is the day your hormones kick off so you may feel a bit tearful.  She definitely got that right.  Anyhow, I tried to sleep with the beeping, honking and dinging going on through the wall as the room was one stud wall away from the Special care unit.

2am my alarm went off.  I expressed, Darren slept. I remember looking out our window and all the street lights on in the distance. Car lights moving along the coast road.  Without sounding like a deep and meaningful cliché, life really was going on whilst I felt like mine had just been smashed into a brick wall. Then I tuned into the beeps and dings from the unit.  Every now and then there would be alarms.  Was that noise Elsie? Was she ok? I  wanted to pump so fast and then go and take my milk to the nurses to  put in the fridge and whilst I was there go and see Elsie quickly.  I went in my PJ's, I didn't care.  The nurse smiled at me and told me I should be asleep so I handed her my milk.  She said  something along the lines of oh fantastic or something.  Whatever it was it made me feel like I was really helping.  At this point I didn't realise how much therapy I was actually going to get from expressing.  I went back to sleep feeling reassured Elsie was comfy.  She looked a better colour already.  They had her on IV fluids and under a lamp.  The jaundice wasn't going to hang around for long.

We got up about six that morning and got ourselves ready for the day. My parents and Darren's dad were coming over too at some point.  We sat with Elsie in the morning going forward and backward to our room for a break.  At about 8am the surgeon we were waiting for came in.  Mr Mohammed, who is now my real life hero.  He came to chat with us along with the same surgeon who spoke to us lastnight.  They explained the operation, the risks, what they were doing, how they were doing it and what to expect when she comes back from surgery.  At this point there was a lot of hustle and bustle going on around Elsie.  I also noticed the morning nurse wasn't quite as on it as the night one was.  From my work history I could see Elsie's suction wasn't being flushed as much as it should.  She had saliva flowing out her mouth and nose.  I asked the nurse to flush it through so the mucus would clear.  She did about 5 ml of water and that was enough to clear it but not enough to last fifteen minutes which was the gap between flushes.  I went to get my parents and also Darren's dad had arrived at this point so they went in to see Elsie at different intervals.  My parents and Darren's dad and his partner sat round in the lounge area near our room.  There was an immense amount of tension between them.  None of them had been in this situation before.  They should have been coo-ing over their new grand daughter and sharing happy stories.  Instead they were silent and nobody really knowing what to do or what to say.  They were all worried not only for Elsie but for us aswell.  In a way, I totally appreciate that they almost had it worse.  They were worrying about two generations and also had no idea what the right thing was to say or do for us.  I took a break from sitting with Elsie and Darren took his dad and partner in to see Elsie.  I didn't know what to say to my parents at this point.  I had just left Elsie after asking to do a flush before I left.  I knew she was ok for a bit.  I wanted some time on my own. I had had enough (in the nicest possible way) of people looking if I was coping.  Seeing if I was about to cry.  And in a way I didn't want to see my relatives cry even because that made me feel so guilty.  I don't want to say I felt like the whole thing was my fault, but I did.  My mum asked me if I was ok and I just threw her a smile and went into my room and expressed.  I also needed to call the tongue tie nurse and cancel the appointment for Monday as Elsie was clearly going to be unavailable. How was I going to explain the situation to her and hold it together....easier than I thought.  She was lovely and said there were lots of people in Brighton who could do it etc etc. I expressed and went out to see mum and dad. Darren's dad and partner were back sat there so I spoke to them.  We were talking about the operation.  

"Do you actually know what's wrong with her?" I asked in a very matter of fact way.  I could see Darren's dad was getting upset.  This poor bloke had had a massive trauma of his own in the past two years.  He did not need this too.  

"No, not really." He replied.  So I showed him a diagram.  It was the easiest way rather than try and explain it.

I had to go back to Elsie.  I wasn't at this point trusting the nurse.  Elsie was not happy  which didn't make it any easier.  She just had continuous bubbles coming out her nose,  I asked the nurse to do some more suction.  Darren was with me at this point.  I kept saying to him they need to do suction again.  Five minute later I said to the nurse again "I'm really sorry, she needs suctioning again." She just looked at me.  It was so frustrating because I knew I could do it.  I was trained to do it.  But I have experienced that kind of parent and they do not go down well.  Another Dr, maybe a registrar came over to speak to us explaining that she"ll probably be going down to surgery in about half hour.  Midday. That was great, I also used him as my life line to get Elsie some more suction.  

"Please can you suction Elsie please, she's really distressed and bubbles are coming out of everywhere."

He called the nurse over and she did.  I asked her to do loads as I wanted to get all her grandparents in to see her again before she went down.  I didn't want her looking distressed at all as they had enough to worry about. When she was clear I went to get everyone and said they could go in ten minutes and then I wanted time on my own with Elsie and Darren. 

Darren went in with his two relatives and then me with my parents.  Then Darren and I were on our own with Elsie. She was transferred into the mobile incubator. Tubes, suction and everything in tow.  At this point she looked at me and was crying.  She had bubbles going everywhere again.  Please someone look at her and realise. I really don't want to be that nagging mum.  But instead, and I can't complain as they have a job to do, they were sorting notes and wrist bands etc.  Elsie was harnessed into the box, looking at me and struggling to fathom her bodily functions.  I couldn't not ask... 

"Please, before we go can you just suction her." I asked. I was really feeling it now.  I had an eruption of tears on the way, yet I had to hold them back.  Everything now was positive.  My daughter was about to be fixed.  Why did I feel so emotional? It was awful.  Yet in my mind I was constantly thinking. We are lucky.  Our daughter is going to be fixed.  She hasn't got cancer, she hasn't been diagnosed with a life threatening disease.  Get a grip.  I was actually in a really lucky position.  But I was in my bubble.  I didn't really care now, I didn't even really care how Darren was coping.  I didn't want to know.  If he wasn't, which of course he wasn't, it was just somebody else's emotions and feelings for me to feel guilty about.  

Elsie was suctioned and we were allowed to the theatre with her.  We followed her incubator to a private part of the hospital.  It was the worst walk ever. We got to the theatre door and all these Drs and nurses came out and met us in the corridor.  What do I do now? 

"If you say bye to Elsie here as we'll have to put her under in the theatre as opposed to the anaesthetic room" a lady said.

I looked at Elsie who needed suction again and was crying so hard in her incubator.  I couldn't hold it together.  They opened one of the hand holes and I just stroked her arm crying and turned and left Darren to do the same.  As I turned the Drs started spilling back into the theatre and I caught a glimpse of the table.  A massive light above it but I was drawn to the Velcro straps that were unfastened on the table.  That was where my daughter was going to be strapped still during her operation.  The feeling was indescribable.  Awful.  We waited outside for someone to take us back to our relatives. I was a mess and mustered the words, "what have we done?" Darren immediately replied.

"What do you mean what have we done?"

I didn't answer.  What I meant to say was, what have I done? What had I done in pregnancy to make this happen.  I shouldn't have, but that was all I was thinking.  I had done this and this poor innocent baby was quite frankly broken and it was all my fault.  The nurse came out and took us back to the unit where our room was and said she would probably be out in about six hours but if we were leaving the hospital be back for 5pm.  We left for the Brighton marina as it was only around the corner and I needed a change of scenery.  I was no use to Elsie whilst she was in surgery so what was the harm.

There's no place like home...isn't there?

Elsie was born on Wednesday 12th and we got home late Thursday 13th. Friday 14th Elsie had her tongue tie appointment. Her appointment was at 11am so we had plenty of time to get ready and get out the house...in a normal house yes, in ours, NO!

I had been up all night with Elsie making sure she was comfy, breathing and not choking on the milk I had been giving her.  I had got her into a routine of feeding her 10mls every four hours. Feed her, wind her and change her nappy. Then the cycle would start over. I would feed her and the next few hours would be full of horrendous breathing and sicking up the milk. When this was over it was time for the next syringe feed so  I would change her nappy and it would be her opportunity to bring the last bit of milk up. Then she was ready for the next feed of milk.

5:30am Darren came downstairs and took over me caring for Elsie.  I was exhausted and I handed over. As soon as my head hit the pillow I was asleep. Next thing I knew it was 10am and Darren was waking me up for Elsie's appointment at 11am. 

I couldn't believe it. When I was pregnant I wanted to be a mum who was on top of it all. I didn't care if in my head I was a swan on acid, on the surface I wanted to be cool, calm and in control.  I could not have been further from this ideal. I got out of bed covered in disgusting post natal sweat and quite frankly, I didn't care. I got myself in the shower for all of a second and threw some clothes on.  Meanwhile I was yelling at Darren what to pack in the changing bag. "Nine nappy's, two baby grows, three vest....because you just never know for a half hour appointment!!!!"  Anyway we were all bundled in the car, we just pulled out of our road and I had the awful feeling you get when you have forgotten your PE kit at primary school.  I didn't have Elsie's hospital notes.  In hindsight it really wasn't that big of a deal but for me it was just another way in which I was failing miserably at this new job I had inherited...being a parent. Not only did I have that feeling but I was also terrified, not because Elsie was about to have her tongue cut which allegedly is not painful, but they encourage you to feed your baby afterwards as pain relief! I can't successfully feed my child when she's relaxed never mind screaming in agony! What if they realise just how rubbish a parent I am at that point????!

We got to the hospital in a crazy panic at 11am, appointment time!! Darren dropped Elsie and I and we ran into the children's department.  "I have an appointment for Elsie at 11am for tongue tie" I said "I'm really sorry but I've forgotten her notes" I said in a jokey but really I'm trying so hard not to cry kind of way.  "Oh," the receptionist said "I'm sorry we've rearranged the appointment, we have just tried to call you and tell you on your mobile and landline but there was no answer, if you could come back Monday?"  

Of course, all those caller ID phone calls on the home phone weren't PPI, they were the hospital. Lesson number one learnt! Answer the home phone from now on!!!

We got home and settled ourselves. Waiting for the first visit from the midwife. She came and was lovely, asked all the questions about feeding but raised concern for the jaundice colour that Elsie was.  I think it would be a good idea if you popped to the hospital to get her checked over if that's ok?  She was concerned about the sickness and lack of milk she was taking. Not to mention the sickening yellow tinge that any fake tan addict would have been envious of.

We took her to the hospital to get checked, her sugars were fine and she was briefly checked. I was a weeping mess. I had all of the right answers to all of the questions yet I knew deep down ,my child wasn't normal. Everyone said babies are hard and I have dismissed a lot of the comments but really....they cannot be this impossible!!!!  Anyhow we were sent home the same afternoon after being told that its just normal baby possetting the fact that my baby is drinking 10mls of milk and yet bringing up a whole muslins equivalent fifteen minutes later is fine.  We went home. I was lost, embarrassed and feeling ridiculously helpless.  Friends were offering help. It sounds like reflux, raise her head up. Sounds liked colic etc etc but I knew there was more to it but I had nothing better to suggest. That night I watched her sleeping in her bouncer, it was the only place she seemed comfy, upright! I'd sing a song to her with her name in it that I will never forget. I will never forget that feeling of being so lonely. 3am is a horrible time to think you need to do something but you don't actually know what. I would listen to her horrible raspy breathing and then I had a beautiful moment where the noise stopped. Finally, I thought, she's comfy and isn't struggling. I watched her and in my mind I was having an epiphany. I'd cracked it, this is what sleeping like a baby really means.  Then it dawned on me, her face is red, her top lip is blue! This isn't right, she isn't bloody breathing!  I sat bolt up right and grabbed her out her bouncer giving her a short sharp shock. Thankfully starting her breathing again. I thought something has to be done now. So I got the ready made bottles of milk out the drawer thinking, well my breast milk isn't making her better, maybe it's me. Lets try Aptamil it seemed a thinner consistency. Perfect, what do I have to lose. 4am I tried it. Fail. She cried, I cried, she threw up for an hour and the same routine continued.  Something had to work so I left her to sleep again in her bouncer. I'd exhausted everything but my manual breast pump. I don't know what difference it would have made but at the time I had to try everything. I was failing so I had to give it all a go just to know I was failing properly!  6 am I gave her some of my breast milk I'd managed to express. It didn't work so I thought sod this. Maybe it's me. I'll leave 10mls downstairs in the fridge and go get Darren to give it go whilst I have a sleep.

I woke up at 11am and woke up with the paralysing dread...how has Elsie fed?? I couldn't even get myself out of bed so I text Darren asking how she had been. He replied "we're ok". I know by now that's code for I can't tell you the truth because I'm now worried and I don't want to make you worry more. So of course I was worrying but thought I'll have a good shower and feel a lot fresher and level headed about this shocking situation.  How do people actually manage having children???! I stepped in the shower and the door bell went. It was my breast feeding support worker. I hung my head in shame as she looked at me like I had done something wrong when I appeared in my nighty and dressing gown. I always remember a midwife saying to me "on your visits, if you are still in your dressing gown it is a good thing. You are concentrating on your newborn baby. If you answered with a full face of make up it almost gives off the wrong impression." This support worker didn't get the memo. She looked at me as though I was a lazy mother who wasn't coping...she had got half of that correct in her defence.  We chatted and she told me that today was the day hormones were going to go crazy, NO KIDDING! I said Elsie was having about 10mls of milk every four hours.  Her face dropped. She took numbers, age, weight. She said the awful words. Your child should be having 60 mls every two hours! My heart sunk!  10 mls is practically killing my child and its taking her four hours to recover. How am I meant to give her 60mls every two hours???????!

She ran and got a breast pump for me out her car. 
"Have this" she said "until next week. Keep your milk coming in. Express every two hours, here you are start now" she started looking at Elsie with concern. It was 12 lunch time "when is she due a feed?" She said.  I dreaded that question. I didn't want her to stay and watch Elsie do a feed. 

"12:30" I said. 

"Ok well you must do 60 mls from this feed every two hours, she does wake up for her feeds, yes?"

I looked down at my yellow daughter who was pretty much unconscious at this point. The only sign of life was her loud raspy breathing and the jerks she would do every few seconds (now we know was caused by low blood sugar)

"Yes" I said "when we are feeding her she wakes up." (Because we are choking her)  At this point I am losing every ounce of dignity as I am crying because of my lies and hormones but also the fact my nipple is essentially being stretched within an inch of its life to get milk for this child who cannot tolerate it by this strange machine!! Thank fully the support worker left in time for Elsie's next feed. I couldn't cope doing it so Darren sent me in the shower and he gave 60mls a go. 

I got out the shower and shouted how did it go?  I got a awful reply of we are just having a rest. Enough said. I went straight downstairs saw she'd just managed 15mls and told Darren we are going back to hospital. I called my mum and dad in tears who rushed over. I was at the point now that something had to be done. Babies are hard, not impossible! We got to the hospital and Elsie was stripped off. ..

"We cannot do anything for this baby here she needs to have tests in special care...." One nurse said

"We do not like the strain on her chest and her stomach is distended" a Dr then said

I didn't care. Take my baby and tell me there is something wrong, please!! I needed something to be wrong with her just so I knew I wasn't a bad parent.

We were told she would be back in 10minutes. Darren started watching a football game on his ipad and I was keeping friends and family up to date.  My mum had turned up at the hospital so I nipped out to see her and fill her in. She had been to Boots and done a supermarket sweep of different types of bottles.  We were hoping these feeding issues may have been down to tongue tie, I thanked her and she left. I returned back to our room, Darren's football was at half time. This 10 minutes was getting longer and longer. A Dr came back and told us Elsie had a blockage. They aren't sure what it is but they're just going to do one more test. I wraked my brains. We hadn't given her anything to block her throat. What could it be?  By the end of Darren's football game we were told we could see her. She was stabilised. Covered in wires and suction machines. It was an awful shock. But I was so pleased that it wasn't me and that there was a tangible reason I had been unsuccessful at every attempt to feed her. 

We were told that she was being Ambulanced to Brighton Trevor Mann unit for an emergency operation tomorrow. It was all getting a bit real. They needed to take my blood for some reason. But anything that they needed to do I was going to comply with. I was just pleased finally my prayers were answered. My child was ill. It wasn't just me being pants!  They put Elsie into a portable incubator with oxygen and allsorts of equipment. Then the question I knew was coming but I had dreaded was asked...do you want to come in the ambulance with her...?  I really didn't. I wanted to go home, eat, pack my bag and get my head straight. I just burst into tears and looked up at Darren and asked if that was ok that she went on her own? I knew in the soaps that would have been the moment the mum would have ran behind their child being taken off in an ambulance and maybe seeing that on a daily basis on TV was what made me feel guilty.  I just needed to get my head straight as I knew if anything Elsie was being looked after now. So I need to look after myself, be it for five minutes.  We went home and packed our bags and made sure we were fed and watered and made our way to the Trevor Mann unit in Brighton where we knew things were going to get worse before they were better...

Elsie was here...

So there she was, handed to me as a bundle of towels.  I just laid back in relief that it was all over. I suddenly realised I was holding a baby, not any old baby, my baby.  I had a rummage in all the towels and under a little hat was a screwed up little face. Cute but not looking overly pleased with life. Anyway, when I was having a proper look this cough came from this tiny precious thing and out of her nose and mouth spewed what can only be described as watered down snot! I grimaced as the midwives came over and said "oh that's fine, well done for not freaking out, mums that have babies who do that often have a panic."  When I asked it turned out that when Elsie was delivered she suddenly flew out at the last minute sending a Dr quite literally flying. So she didn't manage to squeeze out the mucus like most babies.  I was fine with that reason.  But after all this stuff came out of her she was making extremely loud raspy breathing.  Nobody seemed concerned so neither was I.
We were transferred from delivery suite to the ward.  I was so pleased, one step closer to home.  Elsie looking perfect in her baby grow fast asleep. Or not so much.  She was breathing so loud and it was effecting her sleep. Every time I was told to breast feed her I quite simply couldn't. She would latch on but as soon as she sucked she just cried.  In the end I had to surrender and express one ml into a syringe. She could cope with that for five minute.  Then the loud breathing would start, the coughing would begin and then she would become distressed. At 22:30 I sent my husband home. I can cope with this I thought. I have midwives to help me, plus all the other mothers on the ward are coping.  Anyway, feeding time again at midnight. One ml into a syringe again. Elsie took it but couldn't keep it down. At this point I needed help. I hadn't slept for days, I was in pain from labour and it was my baby that was screaming and waking the other babies up.  A midwife came in to help me and held Elsie upside down to help her clear the mucus that sounded awful.  She took Elsie to the feeding room. I felt I should follow although all I really wanted to do was curl up on my bed and let them take care of her.  I sat down with the midwife and I asked "is this normal?" She replied "yes, but we can call a paediatrician if you would like."  At that point I didn't know what to do, midwife is telling me this is normal however she's willing to call a paed.  I thought it can't do any harm, plus no other baby is making this noise in their cot!  I'd had enough, I needed sleep so at 2am I called my husband. "I can't do it, please come in."  At that point we were waiting for the paed and I wanted Darren to have a time machine and arrive then and there. I knew when he was there I could get some sleep and let him worry about Elsie for a bit.  I was too tired to feel guilty that I was thinking like that.
Darren arrived and let me sleep. Apparently whilst I was asleep the paediatrician called the ward and said give her water. That should clear it.  I woke at 08:30, all the other mums had their babies. I could have felt like a bad mum. But I didn't. I couldn't cope. My first night as a mother, I had failed and I really didn't care. I went to the feeding room and Darren was there with Elsie watching a film. He had been there most the night and not even thought to come and wake me up. I wandered over thinking this must be a good sign. No coughing, no spluttering, no noise .  But I was wrong she still sounded like she had been smoking 50 a day.
That day things didn't get much better. She wouldn't latch, wouldn't keep things down, wouldn't do what any of the other babies on the ward were managing to do quite easily.  I needed to go home, I needed to sit there on my own with Elsie and get her to feed.  I couldn't do it with ladies coming in and out of my cubicle asking if I wanted tea or lunch.  Please don't think I am complaining I just needed space and privacy! Lord knows I hadn't had much of the latter recently!
 At three Elsie had her paediatrician check to see if they were happy for her to go home.  A trainee and a qualified paed took a look and checked her and were happy for her to go home.  They noticed tongue tie but that was going to be dealt with. I was ecstatic.  I hadn't been home for five days. This was surely all I needed to get my child to latch and keep things down.  Be in our own, relaxed and happy environment. The midwives weren't happy about sending Elsie home for the pure fact she was being syringe fed. But I pleaded, feeling that I knew what was needed and it was just a case of a bit of time and perseverance.
We got home about 20:30 and the next few days and nights proved me wrong and that actually there was a lot more that was necessary....

Introduction to me...

My name is Erin and at twenty two I got married. At twenty four I fell pregnant and had our first child. My husband Darren and I were so excited at the arrival of our surprise baby daughter Elsie. Labour was long but they don't call it labour for it to be four days of fun and games. We hadn't had everything planned to military precision because I had listened to stories with realism. I hadn't gone into motherhood lightly. I knew I wasn't an expert on children. I had probably only held enough children to count on one hand. But it's what you do, get married, have children and live happy ever after watching your children grow up happily and healthily....right?
WRONG! Day four after days of worrying, sleepless nights and crying  Elsie was diagnosed with something called Tracheo Oesophageal Fistula and Oesophageal Atresia.  Elsie was a child born unable to swallow and needed emergency life saving surgery.
I have decided to start this blog for people who are interested. You may know a TOF baby, parent or grandparent. You may be a TOF child. TOF effects roughly one in four thousand children but is lacking in awareness. No body knows what causes it either.  I am slowly but surely going to be adding our story onto here so people may be able to relate but also get some reassurance that if you know a TOF or are a TOF, you are not alone on what can seem like an extremely lonely and traumatic journey.