One Door Closes…

The breast feeding consultant will be referred to as Jackie, because I don’t remember her name or her actual job title, but I do remember that she was very knowledgeable in her field.  She approached me and my mind flashed back to that first day momentarily.  I had seen her before, she had brought the photo of Betty to my bedside and had me squeezing my boobs in no time.  Jackie asked about my feeding preferences and I told her that I had originally hoped to breast feed exclusively, before this was taken from me.  So I explained that I was no longer precious about breast feeding, that I would like to try but I was quite happy to accept that my baby may well be formula fed.  And that is absolutely, perfectly and totally ok.  In fact, I am pretty certain that as long as your baby is fed, and you don’t feed them broken glass, then its just fine.  Anyway, I digress.  My memory is hazy but I believe we continued to give Betty a combination of breast milk and formula via her NG tube.  This day was different though.  Betty was put to my boob and remarkably, she knew exactly what to do but had a little diffickty staying latched on.  I blame my odd shape nipples for this and so I was offered a  nipple shield.  Whoever invented these things is in my opinion, a sadist!  It was this flimsy piece of silicone that I was to place over by own nipple/boob, to give Betty something to latch onto.  Well, the poor kid had never done any of this before and so my nipple or false nipple, she wasn’t getting it.  Around the time I was attempting this nipple ridiculousness, I asked the nursing staff to remove Bettys NG tube for an hour.  Her tube had become an object of play and she was constantly pulling at it which dislodged it, meaning it had to be fiddled with non-stop.  The tube in place was looking grotty and I just didn’t like it so the nurse kindly removed it and agreed to re-tube when Betty’s next feed was due.

When said feed was due, the tube had to be replaced and Betty screamed bloody murder!  She was clearly  in discomfort and the nurse was unable to replace it.  Jackie stepped up and managed, with quite a struggle, to re-insert the NG tube.  A few hours laer Jackie appeared again, peeping her head around the wall I had created out of the screens on the ward.  She asked me in a frank yet compassionate manner, how much I wanted to breast feed.  I repeated what I had already tol her.  That in an ideal world, yes I would have loved to, but now, I just wanted my baby fed so that I could take her home.  And with that, Jackie asked if I would agree to the permanent removal of the NG tube.  Im sure I said YES rather quickly and a little louder than she had expected!  It was the last medical thing on my baby girl and I was desperate to see the back of that tube.  I agreed to bottle feed Betty and continue to try putting her on my boob.

Enter Carol……!  Mum had arrived for a visit during one of my attempts to breast feed my daughter.  She asked if she could touch my boob…..ever the professional is my mum!  Of course I handed her my consent and with that, she repositioned Betty, told me a few key pointers for breast feeding, and that was it.  Betty was on the boob!  She still had to have the formula and bottle to maintain her growth and to measure exactly what she was taking in.  a benefit of bottle feeding I guess, is that you know exactly how much your bay has had.  She would go on my boob intermittently and I often did this as ‘skin-to-skin’ as I wanted to make up for lost time.


I had overheard someone use the phrase ‘room-in’ and came to realise that this was a final step before taking your baby home.  Someone mentioned it in passing to me and so when the Dr came round I mentioned it too.  By the next ward round (two to three times a day in NICU) the assumption had been made that James and I were due to ‘room-in’ that very week.  The beauty of gentle conversational manipulation (insert cheeky wink here!).  Plans were made for me and James to sleep in the parent room (one of only two in the Portsmouth NICU) on the Thursday and Friday.  We would be sleeping in this room with Betty!  I hadn’t realised this when I started telling the staff that we were in fact, due to room-in that week….I was so excited, terrified, gleeful, panic stricken, but above all, I was starting to believe that I would take my baby home.  That the thoughts I’d had during pregnancy of never bringing a baby home, were wrong.  My baby girl was going to be having her first ever sleepover with her mum and dad.  The two people that love her more than anything else in the whole universe.  The two people who had waited and prayed and listened and watched and hoped for 5 weeks, they were getting their baby all to themselves.  With no monitors!!!

The room that we all were due to stay in was actually decent for what it was.  There was a shower which meant I could stay.  I didn’t have to leave her for a whole 48 hours, how utterly blissful.  In the lead up to this, James and I had written a list of things we had to do/Betty had to do in order to take her home.  One Dr mentioned that a potential, discharge date for Betty would be June 30th 2018.  That was Betty’s due date and so I jumped on it.  It was a Saturday and so, in my experience, patients don’t tend to get discharged at the weekend but I clung on to it. 

When the day came to room-in I had given James a list of things to bring in for me as I had packed in a fluster.  When the evening turned to night and the night shift arrived, we were told we could take our baby to our room for the night.  Any problems or concerns, the nurses were all on hand to step in.  Once we were in the room it was surreal.  Just the three of us, how I had imagined it being from the very start.  Betty was settled and sleeping but I got her out of her hospital crib and put on my bed with me.  I lay next to her, watching and listening to her breathing quietly, rhythmically.  I don’t know what was going through my head at the time   but I know that I was in awe of this little girl who had proved to be so strong in her short life so far.  My little sausage is surely destined for great things.

The emphasis in our new found home-from-home, was very much on the parents taking the lead in the care of their baby.  Medical interventions were to continue, Betty’s feeds were on a strict regime, much like a medication regime, and we adhered to this, naturally.  I remember asking one of the night nurses how the oximeter would work in our private room away from the ward.  She told me, quite frankly but with a hint of warmth, ‘you are the baby’s monitor’.  And she was right, people that don’t go through the NICU journey would never dream of rigging their baby up to machines to check their heart rate and oxygen saturation level. 

On our list we had made sure to detail the ‘car seat challenge’ which probably sounds much more fun than it actually is!  The car seat challenge is a new protocol in place for NICU babies and their parents.  I had witnessed this challenge being carried out when in Southampton when Mason’s mum had to put her baby in her car seat and then wait…..I hadn’t paid much attention to exactly what she was being asked to do.  Mason was on oxygen and there was chatter about this, but I just looked over and felt a sense of genuine hope.  They were on their way home and ticking off the final requirements before they did so.  Mason’s mum, Amy, was a friendly face.  One of those that you see and feel instantly settled in her company.  She was a dab hand at NICU life and I got the impression she had been there a while.  She had all her stuff, pillow, bits for her baby and a real sense of knowing what she was doing.  This is most likely a persona she never thought she would have to portray, but she, like so many of us, had no other option.  She had embraced her situation and did so with such grace and composure.  My knowledge of the car seat challenge was minimal.  I knew that Betty had to maintain stable observations for a period of time.  I didn’t know that she had to maintain a stable heart rate and oxygen sats for a whole hour!  Anyone that has put a baby into a car seat for the first time after 5 weeks of being flat in a cot, will know that they tend to be a bit miffed about the situation!

When we did our challenge, James had popped home so I had to deal with the slightly power crazy care assistant on my own.  James had been put in charge of the car seat purchase as he is in the motor trade and that is his area of expertise.  He had chosen the Joie swivel style of seat.  It is (when we bought it) the safest on the market and can swivel around so you don’t need to struggle putting your baby in at that awkward angle.  This means you can get them comfy and ensure the straps are all secure without having to do your back in at the same time.  This type of car seat has an arm that goes from the care seat and onto the floor/foot well.  It is fixed by the isofix dooda so it is considered much more secure than the old seat belt style, although I will stress here that I am not an expert in car seat safety.  I’m just a really anxious mother! 

I put Betty into the car seat and she was not happy.  She settled for short periods but she was mostly really quite pissed off.  What made this more difficult was that the staff had not completed the car seat challenge with a car seat like ours.  So they had no way of replicating the actual angle of the car.  With a traditional car seat, you can place it on the floor and it sits nicely, baby can go in like this and then be transferred to the car.  With our model, when placed on the floor, the arm that is designed to sit on the floor of the car, makes the whole seat look really wonky.  The care assistant had tried to prop the arm up to complete the test but it was a shoddy piece of DIY and to no surprise, Betty failed the car seat challenge quite miserably!

I told the care assistant that I would walk her home in her pram if I had to!  What do people do that don’t drive?! The bloody bus seat challenge?! No, of course they don’t (eye roll!).  I do understand the importance of this test, please don’t mistake my sarcasm and cynicism for ignorance.  I know that it is vitally important to ensure the parents are aware what level of oxygen their bay needs when in the car seat.  The level of oxygen required will differ to their normal requirement due to the position of the car seat.  We all breathe differently in different positions but for most of us, we don’t even notice.  But a baby on oxygen will struggle to saturate appropriately in different positions.  But my baby, unlike Amy’s, was not on oxygen.  She had failed this new test because she simply did not like being in the car seat, or so it originally seemed.  I spoke to James who was instantly irritated but calm and asked about the position of the seat etc etc.  I agreed with the care assistant that we would try again later in the day.  I asked to do the test away from the many toddlers running around being loud, which didn’t help the first attempt.  At around 2pm we restarted the test, this time without the new-born insert that was recommended for the car seat and babies of a normal new-born weight, which Betty still was not.  Nevertheless I lovingly placed my little girl into the newly positioned car seat.  And I sat next to her, staring at the monitors and praying for stable readings.  My prayers were answered and she passed.  Even with the new power crazed care assistant insisting that the test had started at 2:15 so made Betty stay in the seat an extra 15 minutes.  Unnecessary but I, for once in my life, was not going to argue.  I had Saturday June 30th etched in my brain.  I was taking my baby home! 

When James arrived back at the unit we had a debrief of the day’s events.  He commented that I seemed angry, something I hadn’t been in 5 weeks.  And he reminded me that now, in that moment, I was able to be angry with the situation.  Before that time, anger was not an emotion I had even mustered.  Now the crisis had passed.  Now that we were simply jumping through hoops, I was getting short tempered with the hoops.  And rightly so I think, they were stupid poxy hoops. 

The next day a friendly consultant came to see Betty.  He was to carry out a final brain scan, Betty’s fourth in 5 weeks.  He spoke to me as he did it.  He told me that the bleed on Betty’s brain had cleared and it all looked completely normal.  I didn’t know she’d had a bleed on the brain until he said it.  I’m glad I didn’t know, I didn’t need that on my mind as well as everything else. 

James and I, with the help of the staff at QA NICU, had worked our way through the list of jobs to do.  It was Friday 29th June 2018.  We were waiting for ward round in the afternoon.  A female consultant this time.  She confirmed discharge for the following day.

At some point in this week back at QA, I had called Kim and asked if she wanted to come and see Betty.  She said yes, of course she did!  I also had my auntie Nicky and her partner Chris come to see us.  Nicky is a mum of two wonderful boys.  Her boys are men now and they are a credit to her and my uncle.  Nicky is one of the most honest people I know.  She cares deeply for the people in her life and I am lucky to be one of those people.  I remember her coming into the room, being told rather abruptly, to wash her hands and we grinned at each other.  I don’t remember what we talked about but I remember how she looked at me and Betty.  That feeling of knowing my baby was so loved by the people I love the most was and is the most humbling feeling in the world. 

Friday night is a blur.  I know that my mind set of ‘hope for the best, expect the worst’ was more relevant now than I thought possible.  Thoughts of, what if she dies in her sleep the night before we are due to take her home?  What if the Dr on shift the next day finds something wrong with her and stops her discharge?  The list of intrusive thoughts is limitless.  But, Saturday came.  We got Betty ready and James took her to the ward.  I showered and made myself as presentable as I could.  We waited for the paperwork and Dr T was there!  The man that saved Bettys life was there.  He offered us yellow card access to child assessment.  Yellow card in Portsmouth is direct access to children’s assessment.  It means you bypass GP, 111, A&E.  You call them and go straight in.  This was reassuring.  To know if we had any concerns at all, we could go straight into an assessment area and be seen, that was and still is, priceless.  When people say we are lucky to have this, I just smile.  I don’t need to tell them all of this.  They can read this blog if they wish.  But I don’t need to justify why my child has priority.  I know why.  And I know that it is warranted. 


James went to the car to get the pram.  The pram I had last seen in John Lewis when Sue had kindly bought it for us.  He wheeled it in and my heart flipped.  I picked Betty up.  I held her, smelled her neck, kissed her and gently placed her in her carriage.  We had all the paperwork we needed.  James had already loaded the car with our stuff and so we were good to go.  Someone took photos of us, maybe a nurse but I’m not sure. 


We put her in the car seat, still without the new born insert, and off we went.  I had asked James to make sure no one came out to see us.  We live on a main road and our house is attached to the showroom that James and his family own so his dad and possibly his mum would be there.  I just wanted to take her through the front door on our own, without anyone else to consider.  As always, James family were respectful of my wishes and in we all went.  James’s dad had had a gorgeous hand drawn sign made which simply said ‘welcome home Betty’ with a picture of a pram on it.  We stood inside our front door, in front of the mirror I used to routinely check myself in before I left the house, and we cried.  We cried tears of joy, relief, giddy happiness, relief, everything.  Everything from the past 5 weeks we stood and shed.  We slowly moved through to the lounge where we stayed for the rest of the day.  The heat was new to me.  I had only experienced brief periods of the heatwave, so sitting in a lounge that was 24 degrees was new.  It was refreshing compared to the air conditioned hospitals we’d treated as home for past few weeks.  Betty slept.  Betty slept on me, on James, in her new Moses basket.  She was home.  I am sure she knew that.  Everyone knows when they’re home.

This wasn’t the end of our journey.  We are still very much on it.  This marked the end of living in hospital, being told when we could touch or hold our baby.  It was the closure of one door and the opening of another.

This blog reflects on my experience and if you speak to James, you will get a very different perspective on what happened.  James will talk of facts, figures, actual words spoken.  I remember the bad bits mostly and I am thankful for James.  He became my everything.  Before we had Betty I was guarded with James to some degree.  But going through hell and having him by my side has shown me who he is, who I am and who we are when we are together.  I do not gush about how I feel about James, not to him or anyone.  I’m not that way, hearts and flowers make me shudder to be honest.  But what I have in James is a soul mate.  The person I want to see.  The person I want to tell everything.  The person who has seen me at my lowest, my most vulnerable, at my very breaking point.  He is more than hearts and flowers.  He is the love of my life.  He showed me and Betty the purest devotion, love and compassion while all the time, going through the very same trauma.  James coped far better than I did.  James continues to cope far better than me!  But knowing he will always be objective, honest, kind and will go to the end of the earth for me and Betty, makes me want to wake up next to him every day.

For me, the time I spent in NICU changed me. I am still me, I am still abrasive, honest (maybe too honest at times), angry, hyperactive and hostile when I want to be.  But, I see everything differently now.  I don’t judge others so quickly and I always look at what people are doing and think about why.  I wonder what people are suffering that they don’t share with the world.  I chose to document our/my journey because I find it helpful.  Some people choose to keep their experiences private and that is also fine.  Everyone copes differently with the events that this universe sends us and it is not my place, or anyone else’s, to judge how people deal with theirs. 

I have and am still, re-evaluating my own life, career, desires.  I no longer see work as a must.  It is something I will choose to do.  And in time, I will do something that brings me much more joy.  My whole life is now focused on my little girl, the little life that fought so hard to be here with me.  Everything I do is for her.  I surround myself with people that bring me joy, pleasure, happiness and laughs.  I have and will continue to distance myself from negative energy, in whatever form it comes.  I have offended people with this blog and it saddens me that some people, especially members of my own family, can treat me with such disdain when I have done nothing wrong.  I have spoken of my experience and my experience only.  For those that choose to make my story about them, they are no longer a part of my life.   This happened far closer to home than I could ever have imagined and my career is likely a curse at times as it leads me to see people in a light that others are unable to see.  I have distanced myself from this situation and from all situations that make me doubt myself.  I am me.  I am a good mum, I am a fun mum, and I am definitely on my way to being a very embarrassing mum!  My baby is happy.  Betty laughs from morning til night and is a content and beautiful soul.  And, I am happy.

I will be in debt to the medical and nursing teams that worked tirelessly to bring our daughter to full health, and in particular to Dr T.  Without his determination in the first 27 minutes of Betty’s life, we would not have our darling girl as we do now.  We remain under the care of Dr T as outpatients and until recently were also under the genetics team.  We still have no answers.  There is still no known cause for Betty’s hydrops and it is very likely that we will never know why or how this happened.  In future pregnancies I will be under Mr SG, the obstetrician who identified Betty’s hydrops in utero and I trust him.  We want to have more children and I understand that the pregnancy will be very difficult for me, if not physically then certainly mentally.  But we would like Betty to have a sibling.  And so I will have to accept what the universe sends our way.  I will of course, hope for the best but expect the worst.  There is no reason that a future pregnancy should have the same complications as before but because it has happened before, the risk is there.

If you have never been through NICU, if you have had your children and been sent home with a healthy baby within a few days, please count your blessings.  Please appreciate what you have.  I see and hear of people behaving in ways which make me believe they have no idea how lucky they are.  To never experience being told that your baby may very well die, and having to stand by and watch, helplessly, it changes a person.  If you have never had to worry that your baby may not develop normally because they had a bleed on the brain, count your blessings.  I know that you can never truly know what I went through, but I am hoping this might help.  Being a NICU mum or dad, changes you forever and you become a far more refined version of the original you.  NICU parents love in a slightly unique way, not to say we love our children more than other people do, but it is a unique and very special love that we have for our little ones.  It is being part of a group of people you never thought you would be.  NICU parents, I salute you all.  To everyone I met, I think you’re all incredible, strong, kind and just amazing people!

Always hold your little ones close for a bit longer.  Always tell them you love them.  Always hold their hand, sniff their neck as you hug them, look at every detail of their toes.  I still do this everyday.  Because every single day I am thankful for the beautiful gift I have been given.  And, she has really cute toes so….. 

Please continue to share this blog.  The most important thing is that no one else has to go through what we did.  And if someone is going through a similar journey, I hope that this blog may offer some comfort.

Thank you for reading.  I will post more about coming home so stay tuned……. Much love xxx

You’re Moving, Now….

                                                                         This is Betty in her transport incubator.


The following Monday we were approached mid-afternoon and told that there was a bed in Portsmouth and that we were to move in a few hours.  I had planned with mum to give Betty her first ever bath on this day, but mum wasn’t fazed. I called her and asked for a suitcase as James and I had been living in one room for a month and he had brought over a lot of clothes for me!  Mum arrived with the suitcase in her car and she came onto the unit with us.  She knew that she really probably should not bath Betty (there are rules about grandparents involvement and are encouraged to not even hold the baby they are visiting which is perfectly reasonable, but I trusted my mum more than I trusted myself so…) but again, that wasn’t going to stop her, or me.  She gathered the portable bath, filled it with warm water.  She got Betty ready and I was watching with pure intent.  I had no idea how to bath a baby!  I had only ever bathed dogs and that’s really not the same. 

Mum wrapped Betty in a towel, she did it so swiftly, and it was like a QVC advert for how to wrap your baby in a towel!  She held Betty in one hand and started by gently washing her hair.  Betty loved it from the get go!  Once mum towel dried her hair, she unwrapped the little parcel of loveliness and gently lowered her into the bath, using one arm to support her little body (her weight had dropped to 5lb 2oz now that the fluid had shifted).  Betty was instantly a water baby!  Let’s all take a moment and remember that Betty was 4 weeks old on this day.  I know there is something these days about not bathing your baby straight away etc., but 4 weeks is pushing it!  One of the nurse’s found some cheese behind her left ear!  Ok, so if you’re not a nurse/healthcare worker you may be wandering what the hell I am referring to.  Body cheese is a thing!  It is a white ish creamy substance that builds up, generally between folds of skin, and it STINKS!!!  A lot of nurses quite enjoy removing said cheese, and one of the nurses asked me one day ‘do you want to remove some cheese?!’.  Of course my answer was YES!  Betty had a chest drain in her right side and so she was on her left side for a long time, her poor left ear fell victim to this and ended up (accidentally) folded down under her head gear….!  Actually, to this day, her left ear pokes out a little and the left side of her head is a little flatter than the right.  But I don’t mind this slight cosmetic obscurity, she is a bloody miracle!  A flat head and a pokey out ear are and were, the very least of any of our worries!

Anyway I digress.  So I was able to remove a really satisfying amount of cheese from behind both ears.  It was such a wonderful feeling to clean her up.  Those that know me are well aware that I like things (and people), very clean! 

We had about 4 hours in total to get our lives packed up and loaded into the car, before Betty was moved.  Me and mum went over to RMH to get started as James had chosen this day to ‘give back’, which meant he was busy giving blood when we were told about our imminent move!  Me and mum made good head way and had most of the clothes, makeup, dry foods, toiletries packed up before James read the text I had sent him which basically said “WE ARE MOVING BACK TO PORTSMOUTH!”  James loaded the car but he realised the picture of Betty, the one we were given the day she was born, had fallen behind the dressing table/chest of drawers.  He took his time and painstakingly unscrewed the whole unit in order to retrieve said photo. 

We had arranged that he would drive to QA and I would travel with Betty, in the ambulance.  This is something I was unable to do on the transfer from Portsmouth to Southampton and so I desperately wanted to be with her on her return journey.

All was agreed.  The transport team arrived on the unit and moved Betty into the transport incubator.  The same rule applies on the return journey.  The baby must be deemed stable for at least one hour, prior to the transfer taking place.  It was different this time.  Betty had her eyes open and she looked as though she had some idea of what was happening to her.  I longed to reach into that enclosed incubator and hold her next to me.  But that is not an option.  The ambulance team were fantastic.  They explained all the beeping noises to us and told us what everything meant.  The driver seemed like a nice old man.  Friendly and calm.  Perfect for our little road trip.  I was gutted that my seat was in the front of the ambulance and not in the back with Betty, but I understood the reason for this and I was just thrilled to be given this opportunity.  To take my baby girl back to where she had entered the world.  I sat patiently in the front seat, glancing behind me constantly, as we made our way down the M27, a very familiar drive but one I had only done once in a whole month.   

When we arrived at QA, the ambulance team were full of smiles and positive chatter.  I (sort of) relaxed into their mode and plodded behind Betty in her incubator, wheeled along by the transport team.  We arrived on the NICU that we had been on 4 weeks before, in a very different situation to how we had left it.  That didn’t stop me from feeling terrified.  My stomach flipped and I felt the same uncertainty that I had all those weeks ago. 

We walked passed the intensive care area and I could hear the familiar and haunting beeps and alarms of the big machines.  We headed past the intensive care and down towards the ‘special care area’.  We turned right and watched as the nurses and doctors received their handover from the transport team.  I watched as they removed Betty from the enclosed incubator and placed her in a ‘normal’ cot.  The cot you imagine your new baby coming home to is not the one that Betty went into, however, it was the same cot that all new babies go into in hospital and that was a huge milestone for us all. 

Betty no longer had big, scary looking screens above her cot.  She only had an oximeter which detailed her oxygen saturation and pulse.  She still had her NG tube in situ but the lack of machinery and alarm noises was a big change and a scary, but positive step. 


Once Betty was settled and we had met the nurse in charge of the special care area for the night shift, we made our way home.  I hadn’t been home since the day we left to go to QA to check the baby was ok due to my lack of movement.  Honestly, I can’t remember walking through the door.  I don’t remember seeing the bedroom although I had seen the picture that James had sent to me.  I remember a photo of the room.  James had set the next-to-me crib up and had cleaned and tidied.  It looked exactly how I had hoped it would.  But I have no memory of it in person.  My mental health nurse brain tells me that this is because it is a memory I do not want.  I did not want to be at home without my little girl.  I didn’t want her to wake up in the night and be fed by a stranger.  She knew the staff in Southampton and hadn’t seen any staff in Portsmouth since she was resuscitated, the guilt punched at me like Tyson fury.  I had not control over this whatsoever and my ‘reasonable mind’ told me to be thankful she was in a hospital with all the medical staff that had saved her life. 

I had heard the staff in both hospitals use the phrase “establish feeding” but I didn’t actually absorb this.  I was now so used to being in hospital that I assumed we’d be there a while.  The next day I was visited on the unit by the breast feeding consultant.  And so the breast feeding began…this would become our route to getting Betty home.

Bad Turn…

So the mastitis was being treated and my boobs were starting to feel less like glass expressing machines.  I had accepted the loss of milk production but I was still expressing and giving my milk to the nurses for freezing.  As usual, I called the ward around 4am and spoke to mums friend who was on shift.  She reported that all was well with Betty and that she’d had a good night.  I showered and had coffee, my usual routine. 

At about 06:30 my phone rang, private number.  My heart flipped and sank a thousand times.  I answered and it was mums friend.  She told me that Betty had taken a turn for the worse, that they had called the doctors over and they thought her Chylothorax had returned.  I was told her breathing was strained, she was working hard, crying a LOT which she had never done before.  They had ordered a chest X-ray and advised we get to her as soon as we could. 

I woke James up and we shot across as quickly as we could, James was so calm which annoyed me at the time, but he had 100% faith in the medical team at the unit so he just assumed she would be fine.

When we got there, Betty was screaming.  I got her out of her cot and tried to comfort her but it didn’t work.  She didn’t know who I was so it had no impact at all (this thought remains and it taunts me, that I wasn’t really her mum for so long).  She was red in the face and was pulling her legs up.  I thought it looked like colic but daren’t say so as I thought I would be seen as just naïve and stupid.  We watched as the various medics came and took blood, poked and prodded our screaming little girl, watched the X-ray team come, place her on a cold slab and do their job (when they X-ray little babies in NICU they’re placed on a flat surface, naked and left while the machine does its job, it is heart wrenching to watch). 

As Betty had recently started having 25% of my breast milk mixed with the Monogen, it was assumed by all, including me that this bad turn was the Chylothorax and that Betty would have to stop having my milk again and potentially face major surgery. 

The day doctors arrived and a friendly female consultant approached us.  She had a kind face and she spoke to me and James whilst examining Betty and asked us questions.  She asked if I was feeling ok, to which I replied ‘yes, I am fine’ because all things considered, until that morning, I was fine!  But I had forgotten about the searing breast pain of the past week and James was quick to point out that I had mastitis and was taking Fluclox.  The Dr opened Betty’s nappy and queried its contents.  She asked us what milk Betty was having and I assumed it was the stock frozen milk that was defrosted daily as this had been the case so far.  However, one of the nurses overheard this conversation and said ‘no, we’ve been using her fresh milk…..’. And bingo!  Betty had colic like symptoms, tummy ache and diarrhoea!  I was right!  The Dr was furious that Betty had been given my fresh milk for the past 48 hours which contained Flucloxacillin which can give little babies an upset tummy.  Phew! 

As a result of this commotion, the chest X-ray was available almost immediately and the Dr went through it with me, explaining exactly what the image showed.  Thankfully the image confirmed the Dr’s findings, no fluid accumulated in the chest cavity.  They went into a fair bit of detail too, which was really great because I actually understood what was being said and what they were looking for. 

The day this all happened was a Sunday.  The following day James and I were asked to meet with our lead consultant, Dr F and the family support nurse.  Again, this filled me with dread.  The thoughts that ran through my head while walking to the room to speak to them included:  are they going to tell us our baby is going to die now?  Are they going to tell us our baby is going to die soon?  Are they moving our baby to the general hospital? Is our baby ok?  Why do you want to see us privately?!

Actually the meeting was about none of the above.  It was a simple case of, we were Portsmouth patients, or rather Betty was, and we were taking up a Southampton bed which we no longer required.  We were not comfortable with leaving Southampton in the thick of Betty’s trial on  my breast milk.  But I was too intimidated and scared to speak up.  So James did.  He was polite of course, but he explained the situation back to Dr F in terms that were clear to him, and it was a pretty decent analogy to be honest.  James proposed that had he replaced the engine of a customer’s car (James is a mechanical engineer by trade and runs his own car repair workshop and car sales business) he would ensure the care was safe to drive, by keeping it for a period of time, test driving it etc.  This seemed to click something into place for Dr F and she succumbed to allow Betty to remain in their care in Southampton until the trial on breast milk was complete.  Now, as I work for the NHS and grew up with my mum working on the NICU, I know too well the pressure on beds.  So for Dr F to return to her superiors/bed manager and explain that Betty was staying put, would have been a difficult conversation.  Bet she did it.  And she did it because she is a truly compassionate and genuine person as well as an excellent doctor.  We were so grateful that she allowed us to stay and we will never forget her kindness. 

Sometimes we get so caught up in our procedures at work that we can overlook what is staring us in the face.  The people we treat are people.  They all have loved ones, regardless of what they may have done or how they behave.  The babies in NICU have parents that are most likely, scared shitless!  The patients I treat are probably scared too, and they can show this in ways that seem aggressive or hostile.  But one thing I have learned through our time in NICU is that what you see is probably not the full picture.  The people that look scary, tattoos on their faces maybe, they are human and they feel.  The person that seems completely calm and almost as though they don’t really appreciate how sick their child is, they are human, they are coping.  They are coping in the only way they know how and it may seem odd or different to us, but we are all different and we all cope differently.  I have learned to stop and think before I judge.  I have learned that you really have no idea what other people are dealing with so it’s best not to be a dick!  I remember one couple that I saw on our journey, I was weary of them, I had a feeling that our paths may have crossed before and I was terrified they might harm Betty.  Looking back I can see that this was probably irrational.  I told James that I was concerned about these people so James made an effort to speak to them.  He reported back that they were fine, normal, just parents coping in their own way.  At the time I was not convinced but I think he may have been right.  These people lost their baby on the unit and when I heard, I cried.  I cried for them, for their deep and irreparable loss, for their confusion, the fact they would have to leave this strange new community that we’d all become part of.  I think of that couple from time to time and when I do I feel guilty for making a judgement that was so far from the truth. 


So Betty was making great progress and it was only a matter of time before the pressure on beds was brought to our attention again.

The Comms Team…

I feel at this point I should introduce you all properly to the people that played an enormous role in this journey of ours.  When this all happened I didn’t know what was ahead of us so I just shut down.  I removed all social media from my phone and I selected specific people to do all of my communication.  Now obviously there was mum, and she had strict instructions not to disclose ANY details to anyone, just to say that my baby was poorly and having treatment.  I know this would have been hard for mum because she knew so much and she also knows a lot of people, all of whom were deeply concerned for all of us.  But I didn’t think about that, or care to be honest. 

The others were: Fluff; Kim; Boss (my boss whose name I won’t use but will refer to as Boss!).  That was enough to cover all the people I know.  I remember speaking to my cousin Dan over text.  He lives in Los Angeles and is a physicist, so I could tell him details about Betty’s condition and he would be able to read a little and just get it, without any drawn out conversations about what if’s etc.  As a scientist, I just felt as though he would take the facts and just process them but would talk to me normally, no sympathy of sad eyes (because I couldn’t see him!).  I also felt I owed it to him to keep him in the loop as he is so far away, he likely feels somewhat helpless in such situations. 

I think I text my boss to give her an overview.  I called her from Southampton and it may have been a weekend as she was working a shift and she left the main office so that she could speak privately to me.  I hadn’t told any of my colleagues anything and I had started to get messages of ‘good luck, not long to go now…’ and I didn’t know how to respond.  So I didn’t.  I blocked the numbers of anyone that contacted me.  I waited a while, although I don’t know how long, before I told Boss that she could let the team know that I had had my baby, her name, that she was poorly and that I did not want anyone to contact me. 

I learned some months after that an email had been sent to the team to give them this information.  The news spread and an old friend that I went to uni with contacted me.  She asked if I was ok.  I replied to her, she’s an old friend and she would have been worried, I didn’t want that.  But she didn’t hassle me, which was perfect.

I actually also managed to complete my NMC revalidation whilst living in Southampton and Betty being treated!  I knew I was due to revalidate in September 2018 and the NMC are very unforgiving if you fail to do so.  The last thing I needed was to be struck off (basically fired from nursing forever!) so I completed the online form from my phone and I called them to make sure I had completed it properly.  Luckily my boss and I had completed all of the paperwork early in the year, thank god.

So then there was Kim.  Kim is connected to all of my forensic friends, she’s the cry baby I spoke about earlier in the blog, but she was the chosen one.  My forensic friends are a group of girls that I met and worked with in forensic psychiatry which sounds a lot more interesting than it actually is.  We talk everyday on our group chat and so I carried on, a little less, but I wanted to maintain a normal persona.  The reason for this was that Katy, one of the girls, was due to take her nurse prescribing exam on the Thursday of that week and I have been there and done that exam.  Any distraction from receptors, ethical considerations, dopamine pathways, half-life numeracy, adverse drug reactions……the list goes on, would potentially really fuck things up for Katy.  I did not want my situation to make her mind be anywhere other than in that exam, passing it, so that she could start to get her life back!  Anyone that has completed the V300 nurse prescribing course will know what I’m talking about.  It is hell!  But it is so worth it once completed and Katy is on the master’s pathway, she needed to pass this module.  So, I called Kim. 

I remember telling her not to react.  At all.  Because I knew if I didn’t give her very clear instructions, she would cry and insist on coming to see us.  So I told her I had a daughter.  I told her she was very sick I told her she had hydrops.  And actually, had I known more at the time, I would not have shared this with her.  But I did.  Kim said ‘ok’ a few times and then we ended the call.  I have learned since that she kept schtum until after Katy’s exam.  And then she called Katy, told her, and then they shared telling the others. 

Fluff came first, naturally, she’s the identical twin I never had!  Even though we are the most different people you could ever meet!  From our appearance to our whole outlook on life, we are polar opposites!  But I basically harass her into staying my best friend, so it’s her tough luck! I text Fluff the day Betty was born.  I don’t remember the text but she has kept it for me for this part of the blog.  And so I will share that message with you all:

So……weird day.  Keep between you and Paul as friends and most family not aware.  Emergency C section this morning.

We have a daughter.  She is not very well and I don’t wanna go into details on text as it’s upsetting and stressful etc.  I’ll call you later tho.

She was born at 11:06 today and taken straight to neonatal ICU.  She is currently not breathing for herself and the poor little thing is swollen as fuck.

I feel weird.  I had a baby and she was taken away immediately.  Me and James just been to see her and she has improved.  We just have to hope she keeps fighting.

I’ll call you later when things are more settled here.  Currently being tested and injected to fuck as they wanna know what happened to baby/why it happened.

James has been amazing but both of us are weeping messes!”

She read that to me a couple of months after it was sent and naturally I cried.  The bit that stands out most is that I say she was taken away from me.  And that haunts me constantly. 

Fluff was put in charge of logistics.  She allowed me to have all my amazon orders delivered to her house and then she would deliver them to me at the Southampton NICU.  When we had to leave the unit because another baby was having surgery (they operate on the babies in the NICU.  I think so that they don’t have to move them and risk destabilising them) I went to Fluff’s house because she lives in Southampton and I couldn’t bear to be far away from the hospital.  Fluff never hugged me, she knows me too well.  She came to visit, she washed Betty’s muslins and when she could wear clothes, she washed those too.  She was head of logistics and anything practical and she did a sterling job!

My Uncle John is someone that I am very close to, I lived with him for 5 years when I moved to Portsmouth and we are good friends.  It was strange not talking to him, but I could not face explaining anything to anyone and that included people I am close to.  My uncle visited and like my sister and dad, he looked at Betty like she was a normal healthy baby.  He didn’t even seem to notice the tubes and wires.  We went for a coffee after his visit and I felt like he didn’t understand how sick Betty was.  But it wasn’t that at all, it was just that he genuinely thought she would be absolutely fine. 

These people made things easier for me.  I could text or call, demand and be as needy as I liked.  It’s funny in a way that Fluff is the soft one of the two of us.  She is nice to everyone, doesn’t judge, would loan out hundreds of pounds and would never dream of asking for it back (this example is based on fact!  Although it wasn’t me, I always pay her back).  We have different views on most things except musicals.  We both LOVE musical theatre and were in a performing arts company when we were younger.  Fluff can sing, I can’t.  I can dance, Fluff can’t!  I think our careers have influenced us, having worked in forensic and adult mental health, I have seen people at their worst, I have seen what people can do to each other.  Fluff works for a big (very big) business and she works with nice people.  Don’t get me wrong, her job is stressful and hard going, but just in a very different way to mine.  I would spend a Sunday morning rolling around the floor trying to restrain a large man in order to medicate him to help him feel better and not want to kill us all.  Fluff will have to do a presentation to lots of people all around the world, being judged on her every move.  So we both know stress, but it just presents very differently.  ut when we are together it feels like the rest of me is there.  It probably sounds strange, and me and Fluff never say we love each other, but we do love each other.  And without her I am not me.  If I am in a foul mood because James farted, she will just laugh at me.  If she thinks I am wrong, she will tell me.  She knows I will always do what I want to do, what I feel is right regardless of her views.  But I always want her opinion, because it matters to me and she matters to me.  In every birthday card I have ever received she has drawn a penis (Cousin Dan also does this!)!  Fluff is just the perfect fit for me and even though I am a constant burden to her, I know she can’t live without me……!  I am the needy one, which is odd because I am the hard one.  I am comfortable with confrontation if it’s necessary but Fluff cringes at the thought of it and will do everything in her power not to offend.  Me on the other hand, I say what I see.  And being a mental health nurse, I can’t help myself from diagnosing people where I see a clear issue which Fluff finds annoying!  Probably because I have never diagnosed her, because she doesn’t need it (yet!).


Nursery one was starting to get a little easier.  I refused to leave Betty when there were certain visitors around, I wouldn’t leave her when there were screaming toddlers running around and I would make sure that the nurse with Betty for each day knew how I felt.  They were really understanding and they did all they could to keep the nursery quiet, but it was not easy.  Week three I started to notice my boobs felt a bit sore. I didn’t think much of it to start with, I had heard the nurses warn me about mastitis but I didn’t actually know what that was and I just sort of nodded at them.  One day I noticed my left boob looked a bit pink and James agreed that it did, but I carried on expressing and ignoring it.  I ignored it until I woke in the night in agony, unable to even touch my left boob.  I went to the bathroom and looked in the mirror.  It was bright red!  It looked really really angry.  I googled mastitis and thought, shit it!  Now I have this to deal with!  Thank you universe, like I didn’t have quite enough to deal with as it was…

Over on the NICU that day I showed my boob to the family support nurse.  I could tell by the look on her face that my boobs, my left one in particular,did not look good.  Now my friends will know that my boobs have always been funny! I am not ashamed of them, they are what they are, and they’re just not very nice!  But being pregnant gave me boobs!  Actual boobs that required a bra and proper support!  I even had a cleavage!  All of my friends have big boobs, literally all of them!  So when I finally got some I was like, wow!  They look quite nice for a change!  I mean, they got in the way at the gym and I found them a bit irritating and expensive as I had to buy actual grown up bras instead of my little cheap A cups.  So all of a sudden, my new full boobs turned on me.  As Betty was in the NICU, the PAH looked after me, so I went across the corridor (reluctantly leaving Betty withjust James) and was seen by a midwife. She did the same face.  The face a mechanic gives you if your brakes are shot or you need a new engine…’s a wince sort of a face.  Ok, I got it, it was bad.  I was in agony.  Anyone that has had mastitis will know the pain.  For any men that are reading, imagine you’ve been punched in the balls by Anthony Joshua, had them waxed and then dipped in sea salt, and then imagine tiny shards of broken glass being forced out of the most painful part of your newly damaged balls.  This is the only way I can describe it for you men!  I was told to express through it, I had to try to unblock the ducts.  I felt like I was squeezing broken glass through my nipple!  The left one was so bad that the breast lady (another team of people at PAH) said that the tissue damage was extensive and it may not produce much milk, if any, ever again. 

By this point in time, I had come toaccept whatever blows came next.  If I couldn’t breastfeed, then my baby would have formula and I had no worries about that.  Except I did have worries and guilt and self-loathing…..!  Betty wasn’t due to start having my milk again for about another week and so all of this was pretty ok in terms of timing.  I was prescribed a ten day course of Flucloxacillin and advised to warm my boobs before expressing, but to continue expressing through the pain.  The ducts were blocked and the only way to unblock them is to force milk through them. It was agony.  I then realised why I would see other mums walking around the unit with the blue hospital gloves full of water, shoved down their bras.  They were treating blocked ducts!  As well as this I was told a few old wives tales, one of them by an Indian nurse who advised me to get Fenugreek and take capsules of it, but then I read that this can reduce milk production and I was starting to lose all hope for my boobs and Betty ever having my milk.  I stopped the fenugreek after about a day! 

 Then mum arrived with a large savoy cabbage….She put it in the fridge in the family room and told the other mums to help themselves.  This likely sounded completely bonkers but the mums who knew, knew!  There was a mum opposite Betty in nursery 1 (we were moved a lot and thankfully placed near some really wonderful people) who jumped at the chance for a savoy cabbage leaf around her boob.  She was one I had seen with the blue glove down her bra and I noticed she had actual boobs, not like mine.  We got talking and she told us that she had a blocked duct and was desperately trying to avoid mastitis.  Her baby was thriving by this time and was actually feeding from her which was so so lovely.  I remember one day this mum went to have her dinner, I think she’d ordered Chinese or had something nice to eat.  Well, her baby obviously got wind of this and he screamed for her boob!  Bless her, a nurse had to go and get her so she could feed her darling boy.  I would have a sneaky peek at her feeding and hold onto a slither of hope that I too may be able to do this. 

Once the fluclox had kicked in and I had had many a hot bath, dangling my boobs in red hot water and squeezing with as much force as I could muster, I gave in. I turned to James.  I told him that one of the boob ladies had suggested the ‘dangle theory’ which basically involved me on all fours, boobs a dangling, pumps attached and pumping, we were trying to let gravity do its thing.  But the pain was just too much to bear.  I couldn’t inflict this pain on myself.  So I told James to use his thumb and forefinger and gently (VERY GENTLY) pulse them in and outon each boob.  For some reason, I was able to let him do this, but I could not even touch my own boobs by this point.  So, back in our room at the House, we started.  James was nervous, he knows me!  He knew if he squeezed too hard I would launch him into next week!  But, he started and he did so very well.  He responded to my commands of ‘harder, slower, faster’ with apparent ease and at this point, we both burst into absolute hysterics! For the first time in 3 weeks we were laughing!  Proper belly laughing, tears and all.  God knows what the people next to us must have thought, with my commands……I guess the laughter made it clear we were not indulging in anything naughty!  I think that by James doing this though, he was able to sort of, crunch up the massive lumps that had formed and the next day, although still very painful, my left boob started to produce more milk.  Things started to flow, albeit very slowly and it still felt like passing shards of salt laced glass through my nipples, but it was moving!!!  Every time my boobs went ‘ZING’ from this point, I was able to get a little something from my left and an ok amount from the right. 

It’s funny you know, my sister was asking about boob things the other day and I said to her, I wish I had taken photos of my boobs back then, that would be so useful to have and to show people what mastitis looks like.  She replied“you did”…..followed by a photo of my left, red raw, lumpy, oozing boob!  Seeing that image brought it all back.  I showed James and he literally shuddered at the memory of my boobs.  I have considered sharing that image, but I have decided not to!  It is not a nice image, but if any of you are intrigued, I am happy to share individually as it may help others to know that someone else’s boob looked rank! 

The photo of me on all fours……yes it was a selfie.  I took it to send to James and Carol.  To lighten the mood, to bring a smile to their faces, or rather an eye roll from them both!  But this is the reality of NICU life, mastitis when it is really severe and it is a snippet of my zany yet charming personality.  I am not shy!  Neither am I a fool though, and this image is not to make light of our, nor anyone’s NICU journey.  It is about being real.  Remembering who we are.  Despite the trauma, the heartache, the not knowing (which continues to this day).  We are still us.  And yes, these events have changed me for sure, but I am still Mandi. I still insist on my name being spelled with an I….I am moody, I take the piss way too much, I am loud, I am way too honest (apparently) I am ‘weird’, but above all, I am unapologetically me. And this kick in the tits was just another twist in our turbulent tale.  And I own it.

Ladies, if you have, have had, or ever do have, mastitis… is a bitch!  I strongly recommend savoy cabbage leaves.  Put it in the fridge, get that chill factor, trust me, you red boob/boobs will appreciate it.  The cooling effect lasts hours, and if you’re in hospital and can’t easily access a fridge, just turn it around, trust me, it’s like a whole new leaf on your boob!

Another nugget of wisdom that was bestowed upon me during our stay in Southampton NICU, was the magic, self-made expressing bra!  One of the mums in nursery 3 (intensive care) told me about this and it sounded so simple.  Literally cut a hole in your bra, around about where your nipple is.  Boom, done!  Instead of paying ridiculous money for an expressing bra (naming no names…).  So I did this, which meant that I could cling onto a little bit of dignity while expressing. In the photo, I am wearing one of said home-made bras.

This chapter makes me smile, which is strange because it was, at the time, such an enormous blow to me.  But I just rolled with it and I did that thing that I hated people saying at the time……I took each day at a time.  And when you’re in NICU as a parent, this really is all you can do.  Each hour that passes turns into a day, then it rolls again, and again…..and for some the time  stops and their baby becomes an angel.  And for these babies and these parents, I send you my love. These tiny babies leave tiny footprints that leave an imprint on this world. 

Our First Cuddle

Our First Cuddle


As Betty seemed to be getting better, the decision was made to remove her breathing tube.  She hadn’t breathed on her own at all so I was petrified at the thought of the tube coming out, which I am sure sounds bonkers.  I asked what would happen if she didn’t breathe and the doctors said quite plainly “we’ll re-tube her”.  They said it like it was the most normal procedure in the world and actually, to those guys it is, but for me, the thought of my little girl struggling to breathe filled me with fear that shook my body from the inside.  I decided not to be present for this.  The step-down from fully ventilated is continuous positive airway pressure or CPAP.  CPAP applies mild air pressure on a continuous basis to keep the airways open in people who are not able to breathe spontaneously on their own.  It also has oxygen flowing through it into the lungs and this is adjusted according to the baby’s ability to saturate oxygen sufficiently.  All NICU parents know their babies numbers!  We knew what was good for Betty but all the babies were different.  It is wise to only look at your own baby’s numbers because looking at others can cause all manner of thoughts.  Thoughts such as “oh my god that baby is really struggling” or “why is my baby not doing as well as that baby over there”.  All babies are different and so I tried to focus on Betty’s numbers but when other alarms sound it is hard not to look and be concerned.  Once the tube was removed, Betty breathed without the ventilator which was fantastic.  She moved onto CPAP which was a huge step forward in her treatment.

All the time she had the chest drain in, a cuddle was not an option because the position of the chest drain is vital and it is a delicate process.  Moving her with that in situ would have been dangerous.  I agonised over this.  I was so concerned about our bond because I couldn’t hold her.  But looking back, I know she knew I was there.  She knew our voices and she knew our touch.  With the chest drain now clamped, our first cuddle was getting closer…

To our delight, we were told that the chest drain could be removed.  This meant a huge reduction in the risk of Betty contracting a hospital acquired infection, or any infection to be honest.  It was also another step forward in her treatment, Betty seemed to want to get better now.  And I didn’t ask, but I prayed for a cuddle with her.  One morning, while I was eagerly filling in my little booklet on how to perform the NG feed safely (this is a requirement of all parents before they can go ahead and feed their babies via NG tube) I was asked by one of our favourite nurses if I wanted a cuddle.  I thought it was a bit odd, why are you offering me a cuddle….?!  She instantly saw the panic on my face (I am not a cuddly person!) and she made it clearer.  Do you want a cuddle with your baby today?   OH MY GOD YES!!!  I could not believe it!! I just wanted everyone to go away so I could have my cuddle.  I had to wait until the afternoon, to make sure Betty remained nice and stable.  I was happy with this because my mum would be there in the afternoon and that made me feel safe. 

When that time came, the nurse got me a reclining armchair, a screen to put around us for privacy and she told me to sit down and get comfy.  She would get Betty out and place her, very gently, on my chest.  And there it was.  My first cuddle.  Betty was 16 days old and I was so happy.  I remember mum looking at me and James standing to my right.  I was worried and kept looking at the monitors behind us and the nurse told me to stop it, she would worry about the monitors, just enjoy this first cuddle.  I have to say, it is the only cuddle I have ever truly enjoyed in my entire life!  My little girl, all 5lb 2oz of her (her weight after the fluid had drained off her) nestled into my chest.  It is a feeling I can’t describe.  I know all you mums out there reading this will know that feeling.  This is the moment I fell madly in love.  The fierce protectiveness was still there but it had been joined by an enormously overwhelming sense of love and devotion.  This little girl might actually come home with us, maybe.  I still didn’t want to get ahead of myself so I tried to focus on the moment, on each moment as they happened.  I wanted to share this photo and part of our journey on social media a while ago, but I thought that without this explanation and background, people may judge.  I think it is difficult to imagine not holding your baby for over two weeks, so I wanted to make the whole situation very clear first.  If I could go back in time and have a smooth delivery and a healthy baby, I would take it in a heartbeat.  But that isn’t an option.

It was James’s turn next and he looked instantly perfect with her on him.  But he was selfless with his time and he insisted on me having more time with her.   Carol said that Betty looked much more comfortable on James and it reminded me of when my sister had her little girl and she told me my arms were too skinny to hold her baby comfortably.  That stuck in my head for all these years, thinking a baby would never be comfortable in my arms.  But she was wrong and mum was wrong too!  My little warrior princess was perfectly snuggly on me and I know she loved that first cuddle as much as I did.

Betty had whizzed through her breathing support really quickly.  I will ask James to help me clarify the exact durations, but she went from CPAP to high-flow (oxygen prongs up her nose) to nothing in the space of about a week.  When she had high-flow, she just pulled the prongs out of her nose constantly and no matter how the nurses taped the tubes down, she would yank them out!  Actually this just proved that she didn’t need the breathing support any more.  I think she was trying to tell the nurses and doctors this by playing with the tubes so much!

Betty was also being tried with cup feeds and she was doing well considering the monogen has a reputation for tasting and smelling gross!  Thankfully she hadn’t ever tasted breast milk so she had no comparison to make!  The nurses had to do the cup feeds and I’m glad of this, it looked really fiddly. 

It was as if Betty was a computer that needed to be turned off and then on again, you know what I mean?!  She needed to be paralysed and ventilated and medicated and drained etc etc.  She needed all of these things so that she could reboot herself.  And once she started to make progress she was unstoppable, mostly. 

The next scary bombshell to be dropped was that Betty was to be moved to nursery one.  Nursery one is half high care and half special care.  While Betty was on the Monogen milk, and was doing so well with her breathing, she no longer required intensive nursing care.  This was scary for me because I had become accustomed to nursery three.  I knew the layout, the nurses, the mums and dads in the room.  But it was progress and if she needed to go back to nursery three then they would take her back.  So we moved…..Betty was put into a cot which reminded me of a Romanian orphanage.  It had cream coloured metal bars, like something you’d see in an advert for a children’s charity.  But, it was a cot!!! Not an incubator!     

I didn’t like nursery one.  There were a few saving graces though.  One of mum’s best friends worked mostly in that room as a nursing assistant and she worked nights which meant when she was on shift, I could semi-relax.  The things I didn’t like were the other people.  It was busy in nursery one and there seemed to be loads of people around all the time.  I remember one day I could smell cigarette smoke really strongly and it was from a family opposite us.  I hated having no control over who my baby was around.  There were also a lot of toddlers because siblings can visit any time, which is great….but I had been used to nursery one and our NICU friends quiet and polite little girl.  Nursery one was chaos during the visiting times, grandparents and friends of other people.  I wanted to protect Betty and I was terrified that one of the toddlers that were running around would poke Betty or bump into her cot.  I wanted to take her home but I couldn’t.  I had no control, again. 

Another diagnosis…

Another diagnosis…


For two whole weeks we did the same routine, about 12-14 hours with Betty, then back to the House, eat, shower, express.  James went home a lot.  He would go and get me more clothes, pants, whatever.  I wouldn’t go home.  I didn’t want to ever go there, not without Betty. I don’t know how James managed it.  There were hypnobirthing posters all over the house.  All of my positive mantras plastered over the kitchen and bathroom.  A picture of how my baby should be positioned inside me to allow for a smooth labour.  I would sit on the loo and look at this picture, trying desperately to make sure baby was in the right position and that my labour would be smooth and go to plan. 

At the House I would stare at my reflection in the bathroom, my face and my body.  I’m not sure what I was thinking, if anything at all, but I would stare.  I was still much bigger than I had ever been but I didn’t care at all.  I was wearing one of Carols dresses and Fluff lent me one of hers too.   They fitted nicely and mum was so chuffed that at long last, her clothes fitted me! I lived in flip flops as my feet were so puffy and also, remember how hot it was this summer?!  The NICU in Southampton did not have air conditioning, or if it did, it was hard to notice as Betty’s incubator was heated from above and below.  I felt like a chunk of bacon, slowly cooking between the lamps! 

I got used to the routine in the NICU and although I didn’t fully understand what was being discussed, I had a vague idea of what was happening. One of the medics was a professor and I will refer to him as Prof through the blog.  I liked him.  He and Carol got along well, I could see that as soon as they saw each other.  Prof took a real interest in Betty, maybe because he was a friend of mums but I think he was genuinely intrigued as many of the medics were.  One morning, at about 2 weeks in (I am relying on James for these details) we were called early in the morning.  The NICU team would call us if there was anything at all to tell.  My heart leapt out of my chest each time a call came through from a withheld number, I knew it was them and I feared the worst each time.  During this call we were told that Betty’s chest drain was blocked.  The night shift team of ANP’s and medics were honest and told us that they were on their fourth night shift and as it was about 4am, they didn’t feel it would be safe or appropriate for them to start moving or clamping the drain.  The reason they clamped the drain was to ‘test’ whether or not it was still needed.  Chest drains are very invasive and so it is better to test it by clamping than removing it and having the possibility of re-inserting it. 

We appreciated their honesty and we agreed that it would be best to leave the chest drain well alone until a set of fresh eyes arrived on the day shift.  The day shift consisted of the Prof and he was the one that told us “I don’t think it’s blocked, I think it has drained all the fluid it can”.  In order to test his theory the nursing team had to move Betty into a different position a few times throughout the morning to see if any more fluid drained off.  Small amounts of fluid appeared which showed that the Prof was right and it was not blocked but instead there was very little fluid left in Betty’s chest.  Because of this it was decided to clamp the drain for 24 hours.  All of this was so bewildering to me.  But James was doing his stern nodding face, with one hand on his chin and the other folded across his middle.  That is his serious face.  He means business when he looks like that! And I knew he would help me understand it all later so I just nodded……completely bemused, a nodding, half grinning girl that wanted all of this madness to stop. 

With the chest drain still in situ, the medical team decided that now would be a good time to start giving Betty some actual food via her NG tube.  They wanted to keep the chest drain in and her fully ventilated to reduce the risk of any problems with too many changes.  Betty’s first feed of my breast milk was 3.5ml…….!  At the time this seemed like an enormous amount to give her but I trusted the decisions made by the team.  Until this point Betty had been receiving total parenteral nutrition (TPN) only, which is basically all the essential vitamins, electrolytes, fats and minerals that we all need to survive, it was delivered intravenously, she had never had food in her little belly before. 

This was also the same time that the decision was made to place a ‘long-line’ in Betty (in her little foot).  A long line is a fine plastic tube 10 – 15 cm long that is threaded into one of the baby’s small veins in the arm or leg until it reaches a point where the veins are much larger, usually just outside the heart.  This was another worry as it was another potential route for infection and with the line leading directly to her heart, any infection could be life threatening.  A constant battle between risk and benefit, the ultimate decision and I have so much respect for the people that make these decisions. 

A quote from my little black diary, date 6th June 2018

“Ventilator staying in situ while we wait to see how Betty copes with food and to see if chest drain changes in colour/quantity.  Seen again by the prof about vent and fee.  He is talking +ve about Betty and her progress.”


7th June 2018

“12pm ventilator out CPAP on.  Morphine stopped.  Milk increase to 14ml every 2 hours.  Longline in situ.  Restarted Morphine 5mcg.   First sneezes.  First cries.  First coughs.  Lots of spit bubbles!  Jaundice lights/lamp.  First vomit…”

The first cries I mention in this little note are not the cries you expect to hear when a baby is born.  It was a silent cry.  Her face screwed up ready to scream but no sound came out.  Just a pained look on her face.  It was heart breaking to watch.  I remember that, I turned away the first time I saw it.  Then the guilt hit me in the gut.  I put my hand on her, I tried to comfort her.  But it wasn’t the same as being able to pick her up and wrap my arms around her.  All I could do was place my hands gently on her head and bottom or feet, and hope that she felt the love oozing out of my heart and into hers. 


8th June 2018


“register Betty’s birth.

Belly button lines out.  Chest X-ray done.  New cannula right hand for HAS (human albumin solution).  More settled with mussy under neck.  Up to 10ml per feed. 

Kyle fluid in chest drain, re-testing to make sure…stopped breast milk and plan is to use formula for 2 weeks then re-test chest drain fluid to check if chyle fluid is gone.

Dummy!  Going well.  Nasal CPAP prongs in.  Going well.  Bought blanket from Etiquette.  Feeds stopped.” 

The Prof had noticed that the colour of the fluid in the drain was a bit cloudy and he said it looked like ‘kyle’.  I just heard the name Kyle and thought it was a bit weird but he explained what this was.  It was actually Chyle and is a type of fluid.  So, Betty now had another diagnosis.  Chylothorax.  This is (putting it very simply) a type of pleural effusion.  Chyle is a milky fluid which is formed when the body digests fat.  It is absorbed by the intestines and drains into the lymphatic system. The lymphatic system forms part of the immune system that identifies and fights off invaders, such as bacteria and viruses. There is a network of vessels within the body through which lymph circulates. The lymph drains into the blood through the thoracic duct in the chest (  I have taken this explanation from the above website because I am not a doctor or a specialist in Chylothorax!  Please do read more about it if you would like to, I find it really interesting because it directly impacted Betty. 

Chylothorax can be present at birth but this is very rare.  In Betty’s case, no one is actually sure what came first, the hydrops or the Chylothorax.  It is possible that one caused the other but we are still not sure and we likely will never know.  I will up-date this blog following our up-coming appointments with various medical teams we are under.  But one thing I know for certain is that Dr T in Portsmouth identified Chylothorax as a possibility on day one!  With no tests or evidence, he said that his opinion was a problem with Betty’s thoracic duct, which is Chylothorax.  Dr T once again was right.  One thing that has just popped into my mind is that Dr F in Southampton had been trained by Dr T, and this was another reason we felt so safe in her hands (Dr F was Bettys lead consultant in Southampton). 

Now what Chylothorax meant for us, for Betty and for me, was that she had to stop having my breast milk (she was being fed via a nasal gastric (NG) tube).  My breast milk, well everyone’s breast milk, contains long-chain fatty acid.  In Chylothorax, this is what gets dumped into the pleural space and so Betty needed to stop having my milk immediately.  She was on only TPN for about 24 hours and then was put on a synthetic milk called Monogen.  My inner voice ramped up again at this point.  My breast milk was poisoning my baby.  I was poisoning my baby.  Not only had I completely failed her in pregnancy, but I continued to do so out of the womb.  This thought process became normal to me and still to this day, I believe that I poisoned her, unknowingly yes, but the fact remains. 

Chylothorax can self-right itself and so the plan was to stop breast milk for a minimum of two weeks and a maximum of 6.  This is standard procedure for people of all ages with Chylothorax.  We were told that if this did not work, there is a medication that can be used to try to fix the problem and the worst case would be surgery.  But we had options and it was treatable, this was positive.  I continued expressing because it was anticipated that Betty would restart having my breast milk once the Chylothorax had resolved.  Betty was starting to deflate by now, the swelling all over was slowly but surely reducing and bruises appeared under her gorgeous eyes and her chin.  We were told the bruising was from the resuscitation, that the mask would have been held firmly down on her little puffy face in order to revive her.  A little bruising didn’t faze us.  It was the very least of our worries and I think it gave Betty an edge, a bit of a gangster look!    My little warrior princess.

Chapter 12 Treatment, Diagnosis……

Chapter 12 Treatment, Diagnosis……

On arrival to PAH Betty had a chest drain inserted and this was aimed at draining the fluid from her chest.  Now here is the bit I never understood and I still struggle with it so please bear with me.  The fluid that was drained off her chest was measured every hour and documented.  In neonatal care the very tiniest of figures are significant and so this was a vital part of Betty’s treatment.  Luckily, James as an engineer had a sound grasp of the mechanism at play and he kept a very close eye on the drain.  He actually helped the doctors a couple of times when there had been some confusion with the drain.  Chest drains in neonatal care are not common practice and so understandably the staff were a little unsure at times.  This is not a criticism of the nursing team, they were and are the most magical wonderful humans alive, but this was just an unfamiliar procedure. 

James explained to me that equal fluid was being put back into Betty via her many tubes, in the anticipation that she would begin to appropriately place the fluid around her body, out in her urine for example, and stop dumping it into her chest cavity (pleura). 

Now a little note on how things run at PAH.  Every week the doctor in charge of your baby changes.  This is obviously for good reason, but it is unsettling to have a new doctor each week because I didn’t know if they would completely change the plan with Betty or if they would continue on the path that I had (sort of) got my head around.

Betty’s main doctor, the one that was in charge of her care overall, was a lady and for the sake of this blog I will refer to her as Dr F.  Mum liked her, which was a good start!  She had a kind face, genuine and she was on the ball.  She had been fully briefed about Betty and on day one, she and the nurse for Betty that day took me and James into the room we were in on the ward (the family room that we slept in the first two nights).  We all sat down.  I remember their faces, they were serious but kind and empathetic.  They were delivering information to us and it wasn’t good, but I can’t recall it and I am thankful for that blip in my memory.  One thing I do remember though, is that Dr T from QAH trained Dr F, and I liked Dr T, he’d given me hope on the day Betty was born so anyone trained by him would be a skilled and knowledgeable Dr.  After that conversation I don’t remember seeing Dr F for a while but I was happy that she would be kept up to date with Betty and would be making the big decisions.  Dr F filled me with hope, she wanted Betty to get better, I could see that in her eyes, I have a good sense of people and their characteristics and this Dr was definitely a good egg.

As well as the fluid situation, Betty was also born in complete renal failure, another fact I learned after the event.  Luckily, her organs were all fully formed and after two doses of Furosemide she was urinating well and her catheter was removed.  This was progress, small, but it was positive. 

On day two a team of geneticists came to see Betty.  There were three of them and not to be judgemental, but if you imagine what a geneticist looks like, these guys were just that.  They looked geeky, clever and didn’t have the same soft, calm persona as the other professionals.  Nonetheless they were there to help provide us and the medics with answers.  They had a camera and they took phots of Betty.  Her face at different angles, her feet, chest, back, arms and hands.  You name it, they photographed it.  This is because babies born with hydrops often have a genetic condition which causes the fluid build up.  Babies with hydrops also usually have a heart or lung condition which would cause the fluid to leak into the wrong compartments.  I didn’t realise there were so many genetic conditions but there are and none of them are detected in the tests you have during pregnancy.  I hadn’t heard of the conditions the doctors were talking about.  I googled some of them and I wept.  I started to grieve even more.  I thought if Betty had a long term condition that she wouldn’t have a quality of life.  How naïve I was.  Since this, I have learned so much about the beautiful babies/children that have various genetic conditions, and they are all wonderful, loved, happy little people.  But in my state of shock, I couldn’t comprehend a child that could be different to what is deemed ‘normal’.  To me, it was another blow that I couldn’t take. 

One genetic condition that was talked about a lot was Noonins syndrome.  I had never heard of this but mum said straight away, ‘she doesn’t look like a Noonins baby’.  I was curious and scared so I googled Noonins syndrome.  I was frightened.  I wanted ‘normality’ for Betty.  However, I later learned that Noonins syndrome is not necessarily life limiting, it is a condition that people can live with and some people have it and don’t even know.  I learned all of this much further down the line though.  I remember one of the doctors saying that Betty had one feature in particular (on her body) that made him and the genetics team suspect Noonins.  James was not phased in the slightest.  He was accepting of all possibilities, as long as Betty would have a good quality of life, we could cope with any additional needs.  I didn’t mention Noonins to any of the communications team (more of them later).  I didn’t want them to ask questions or god forbid, google it and make assumptions, so I quietly tortured myself.  The difficulty with this possible diagnosis was that Betty was still ever so swollen and so it was tricky for anyone to really see her features at all (facial and body feature/proportions can help to identify genetic conditions), if you would like to know more then please read (  So I agreed to additional testing for this condition.  I was told the results would take up to 6 weeks to come back (they actually took 3 months, not that I was counting…).

One doctor in particular had taken a real interest in Betty and I saw him one day researching hydrops and searching for other causes or conditions linked to it.  The fact that Betty’s hydrops had evidently developed so late in the pregnancy was baffling to the professionals (and us).  Usually hydrops is picked up at a 20 week scan and the prognosis tends to be poor.  Hydrops is also difficult to detect for a novice sonographer and so it can be missed.  I was lucky beyond all belief to have had Mr SG perform my scan as he recognised it instantly. 

All the while this is happening, people are toing and froing from our little girls’ cot side, and all the time she has a chest drain in her right side, draining fluid constantly.  The fluid keeps up its pace, draining almost equal measure to what is being pumped into her each day.  James has his eye on the drain and is keeping tabs on it.  He and the doctors discuss it in detail while I sit next to my little warrior, bottles attached to each boob and pump, pump, pump.  Betty is still fully ventilated and paralysed by the drugs.  My poor little sausage.  I would talk to her, tell her how much I loved her, how much I wanted to cuddle her, hold her, take away all of her pain.  Even going for a coffee would take a good ten minutes of telling her how much I loved her and whispering “I love you baby girl, be healthy, be strong, be happy”.  I said sorry to her a lot.  I failed her, albeit completely unknown, my body failed her completely and to this day, I blame myself.  I didn’t drink alcohol or smoke or use drugs.  I didn’t even take a paracetamol for a headache while pregnant.  I ate well, I exercised regularly.  But somehow, somewhere along the line my body let her down and I will forever place the blame for that on me.  There is simply no one or nothing else I can blame.  It is something I live with every day and although it has not gone away, it is getting a little easier to live with as I watch her grow and smile and play.

I look at her and I think, this didn’t happen to us, to you, surely not.  But I dream it every night and I relive it every day and I am reminded that yes it did happen, and I am still trying to heal myself while growing my darling little sausage. (Betty is my ittle sausage!).

Chapter 11 Post 48 Hours and Ronald McDonald House

My sister, loving my Betty…..

James was introduced to Ian, a good friend of mums, he was also there the night we arrived in Southampton.  Ian is a technician on the NICU and knows everything there is to know   about all the equipment.  Ian also helped James with parking tickets and general day to day things that we needed to know but we wouldn’t had it not been for Ian.  He was also just a friendly face.  He explained the breathing machines to James one day and that was really helpful.  It was just nice to have familiar faces around the place and we were lucky to have that.

When I first went to the house (that’s what I’ll refer to the Ronald McDonald house as throughout this blog) I was in pieces, emotionally and physically.  James carried all the heavy stuff in, the breast pump which became my loyal companion and the suitcases.  We were there for the long haul, we knew that.  The House was like a premier inn.  Clean and spacious.  But the first time I went there I kept my head down.  My body was aching and my head was gone.  I got in the lift, pressed the button James had told me to and when the doors opened there was a big Fijian man standing there.  He must have asked me where I was going and he took the bags I had and placed them in our room.  I had no idea who he was and he me.  But that was the start of the House.  Every single adult in the House had a seriously sick child, either in PAH or in Southampton general hospital.  We were all going through hell.  There wasn’t lots of chatter but we talked, smiled, made our meals, drank our coffee, and shared milk/bread/cereal.  It was like an adult student accommodation.  We all kept it clean and helped each other wherever we could.  It was a sanctuary in many ways. 

I asked James to bring me make up.  I needed to have a routine, I needed a little control.  I could get up and put my make up on.  At least that was a slice of normality.

Our routine became slick.  I would express around 3am, call the ward at 4am, shuffle around, do nothing, text Kim in the hope she was on nights and I remember texting her so she must have been on nights (Kim does not communicate at night otherwise!  She sleeps more than bears do in the winter) wake James up and then head to the NICU to see Betty.  The walk from the House over to where Betty was being treated was gloomy at best.  Once we left the House, there was a very short walk, through some higgledy piggaldy corridors and then into what I refer to as the tunnel. 

It’s a long corridor, with dim lighting, that stretches from one side of SGH to the other.  It’s like the M27 in rush hour.  People are on their way to work mostly, they’re all walking at pace, fast, and how I like to walk under normal circumstances.  But in the condition I was in, I was holding people up and I’m sure they didn’t notice me as they pushed passed.  But I was there, hobbling along that busy corridor, day after day.  You can genuinely see the light at the end of that tunnel.  That’s when I would increase my meagre pace.  I was getting closer to my little warrior.  I wanted to be there before the night shift went home so I could catch the handover, even though I had spoken to Bettys nurse at 4am.  We would see the night staff, say hello to our little angel and then go for a coffee.  We were lucky to have a team of excellent nurses in the intensive care unit.  They’re all band 6 or 7 which means they are experienced and have undergone special training to work in the intensive care area.  Betty had a whole nurse all to herself every day in the ICU.  This enabled me to feel comfortable to leave Betty so that I could eat, express, sleep.  Nonetheless it still took a good five minutes or more for me to say goodbye to Betty, to tell her how much I loved her, that I was so proud of her, that she was a strong little girl and she was my little sausage (sausage became my nickname for Betty!).  James would wait patiently for me to complete this ritual before leaving the room.  I did this because I feared that she would die when I left and I wanted her to know how much I loved her just in case this happened. 

Mum was there a lot and my sister Lisa came as much as she could, but she was big and waddling and she had a long drive to get the PAH.  I remember feeling surprised that she was visiting so much, considering how shit she was feeling herself (remember she was also pregnant and was due June 26th).  Mum joked that she was in the right place should she go into labour!  I remember thinking, oh please do, then you’ll have to stay here with me, however selfish that sounds, I wanted my big sister.  I never have before, not really and not like that.  She was an extension of my mum so having her there made me feel safe, protected in some way.  Even though Lisa is short, she is my big sister and regardless of any squabbles, she would look after me.  Her eldest daughter is like me and I have always found it funny that my sister, who has always been good, well behaved and probably my parents favourite, had a daughter with as much sass and attitude as me! Now in chapter two I spoke about my sister being pregnant at the same time as me and how that made me feel at the time.  Well, as the pregnancies all progressed, it turned out to be a blessing.  Comparing notes with two other people who were pretty much as pregnant as me was a great help and I started to look to the future.  Three cousins all the same age growing up together was a good thing and it was exciting.  I no longer saw the other pregnancies as a threat to my baby and I embraced them.  My sister was the guru, she’d done it twice before so we tended to trust her opinions and advice. 

When Lisa visited for the first time, she looked at Betty as if she was a normal healthy baby.  I can remember the look in her eyes, she looked proud and happy.  She didn’t look sad or scared and that was exactly what I needed from visitors.  I told mum to tell family that visited that I did not want to see them cry.  They would have to hold their shit together until they left because I couldn’t handle my own emotions let alone other peoples.  The other part of this was that Betty was my little baby girl.  To me she was perfect.  So the thought of people looking at her and crying would have been really difficult for me to handle.  For this reason I put a ban on all visitors except immediate family.  Fluff was included in immediate family because she is the person I am closest to in the world.  Rachel came too because when Fluff told her my news, she was desperate to see me and to show me the love that I needed.  Sadly, my other best friend Kim is a big cry baby!  I love her dearly but James reminded me that she would cry which would make me cry and I was doing more than my fair share of that as it was, so I kept my NICU circle very tight.

The first week was a blur, and it was after this first week that I was advised to get a little diary to write everything down in.

James didn’t need a diary.  He was composed and together as usual.  I was shown the expressing room, and was given my kit which contained two funnels, caps and tubes to attach to the expressing machine and bottles.  The expressing room became a place I would go to just to take a breath.  Sometimes I would go there to sleep, although that isn’t what it’s there for!  It was a place where many conversations took place.  Strangers sharing their stories and asking about each other’s babies.  I’m not always good with new people so it took me a while to get the hang of this.  We had met a couple whose baby was in the ICU with Betty.  They were lovely, calm and kind. 

Their little warrior was born the day after Betty and she was 26 weeks at birth.  This couple also stayed at the House and we would often see the dad in the kitchen at the House, sterilising the expressing kit.  That was clearly a job that was delegated to all the men, James was chief steriliser in our room too!  In the interest of privacy I will refer to this couple as A (mum) and B (dad).  They had another child, I think she was about 4 years old and when she visited she would put on a little doctors uniform and quietly play while A and B split their attention between their little fighter and the 4 year old.  They were decent people, I think through my job I have a sharp sense of good and bad people and I make my mind up quickly, these two were good and I took comfort from the little conversations we had.  At the weekend the House often had some activities for the families so we would see the little girl with her face painted from time to time.  Although our babies had very different problems, they were there, next to each other, fighting.  And it meant that the four of us (parents) were connected in our new world. 

I would sit next to Betty’s incubator (which was an open one) and express there. A would do the same.  Like most women I imagine, I no longer cared if people saw my boobs.  They were just things that produced milk, they were no longer a secret part of my body.  The thing about expressing when your baby is sick, is it is all you can do.  So you do it.  I was starting to nail it, I was producing about 200ml per boob every 2-3 hours and the nurses were always really complimentary of our efforts.  I would label the bottles, date and time and pop them in the fridge in the ICU.  The milk was gathered and taken to the unit milk kitchen, another department on the unit that is worth its weight in gold. 

Betty was fully ventilated at the beginning so all I could do was a little mouth care with my breast milk.  I would get a cotton bud, soak it in my milk and wipe around her mouth carefully.  This was as intimate as our contact could be.  But I felt a sense of delight that she was getting at least something good from me.  The other contact we had was a containment hold which is simply placing one hand on her head and one on her feet, apparently it makes them feel secure and it feels ever so slightly like a cuddle.  Not the first cuddle I had hoped for, but a cuddle none the less.  There were different types of nurses and I’ll talk about them more in a separate chapter, but one in particular explained a lot to me about the contact I could have with Betty and what it all meant.  She explained it as being very primal.  She spoke about babies being able to hear us and recognise our voices, she advised against stroking and suggested various ways in which I could feel closer to my little baby girl.  For me, this closeness was something I was craving.  I wanted to be connected in whatever way that I could be and so I asked James if we could give her my surname.  James agreed without hesitation, he understood why I needed Betty to be a Woolridge and so she was given my name and it did help me feel closer to her and it still does.    

Chapter 10 Princess Anne Hospital

I knew the way to the PAH like the back of my hand so I knew when we were close.  The sick feeling in my stomach kicked in again and as we turned right and approached the main entrance, I saw a few bodies.  Mum.  Mum was there.  It was late at night, really late I think and I knew things had to be seriously bad for my mum to be out of the house that late at night.  Was my baby dead already?  Is that why I had a party waiting for me?  I don’t even know where my brother went from there, I just remember being in a waiting area, waiting to be checked into the ward I would be a patient on.  I did not care!  Where the fuck is my baby is all I kept thinking.  I had no idea what was going on.  Mum must have told me, but nothing registered.  James told me (as I am typing this) that he was also waiting for me with my mum and that he came to the ward with me and that he answered most of the questions that I was asked.  I remember being really confused.  And these nurses and a Dr kept asking me questions and then talking amongst themselves, probably about where I was supposed to go, the transfer had been a bit of a rushed job it seemed. 

James’s account is quite different.  When he arrived at PAH he went with Betty to the NICU.  He watched as the highly skilled staff moved Betty from the transporter incubator into the open incubator which would be her bed for the time being.  Unbeknown to me, the journey from QAH to PAH had been very turbulent.  James is a man of few words and he very rarely shows emotion.  His description of the transition from Portsmouth to Southampton brought tears even to his eyes.  He told me that Betty had had a few ‘moments’ in transit. The first moment was in the lift at QAH before they had even left the building.  The transport team had to stop the lift and perform lifesaving treatment to Betty before setting off again.  In the ambulance on the way this happened again. The ambulance is different to normal ambulances.  It is white and it says Neonatal Intensive Care Ambulance of the sides and it only transports babies.  And it is an incredibly precious and important piece of kit.  Right now Southampton Neonatal Unit are raising funds to purchase another ambulance so that no baby should have to wait to be moved in order to receive life-saving treatment.

Despite the rocky move, they arrived in Southampton and headed to Nursery 3, NICU.  Betty was moved from the transport incubator into the open one with apparent ease according to James.

I have a very patchy recollection of the next bit but James tells me that me and him went together to the NICU and saw Betty.  The staff were absolutely incredible, they really were.  They let us see her together after they put the chest drain in.  I knew from my own nursing experience that chest drains are not pleasant at all so there was no way I was going to stay and watch them do that to my little girl.  They also wouldn’t let us stay for it, and rightly so.  We were shown to the bedroom on the ward, on the actual NICU.  I can remember bits and pieces from that room.  The shower.  The two single beds pushed together. 

Please click the image to donate to the NICU Ambulance service and help them get a second ambulance!

The lack of sleep and the tears.  I am sure I got up and went to sit with Betty at some ungodly hour.  I was so close to her and I couldn’t sleep.  The nurses would have been kind.  I don’t remember but I know they were always kind.  If I fell asleep I would wake and feel a punch to my stomach, a reality check, yes this is happening. 

On our way to that room I bumped into a nurse with a familiar face.  An old school friend who had always wanted to work on mums unit.  We looked at each other, both equally bemused.  She hugged me and I cried.  I have no idea what else was said, if anything at all.  But knowing she worked there gave me more faith.  I knew mums unit was a centre of excellence, they are the best at what they do.  But at the same time, doctors kept telling me that Betty was really sick and she quite feasibly could die.  So my head was to shot to shit. 

Surprise surprise I do not remember that first night.  I know what the room looked like but we were in it for two nights.  We were told that the parents with the sickest baby get to stay in that room.  So, it’s a tough one because you don’t want any other baby to be even as sick, let alone sicker than your own baby but at the same time, you don’t want your baby to be the most sick.  So along with all the other thoughts running round my head, I was thinking, please someone tell us we have to leave that room.  I don’t want my baby to be the sickest baby here.  And sure enough, two days later we were approached and told that there was a baby sicker than ours, so we had to move to Ronald McDonald House.  I had heard people talk about this place over the last 48 hours but I had no reason to question it, it was just another weird thing.  Everything was weird. 

Mum was there every day, I don’t know which day it was but I remember being on my knees, leaning on one of the sofas in the parent room on the NICU.  Mum had asked me something, I don’t know what, but I remember my response.  I was sobbing, painful, hearty tears, and my whole body in agony from the emotional torture I was going through.  I remember saying to my mum “I want to run away, I want it all to stop…..”  And in true Carol fashion she said, as clear as day, “well you can’t”.  And that was it.  She told me I couldn’t run away, my little girl was just over there and needed me.  I recognised the words I used.  I meant it.  I meant it when I said I want it all to stop.  My patients say that.  My suicidal patients, the ones that really want to die, they just want ‘it all to stop’.  And that was where I was.  I had a plan.  If my little girl was to be taken by the angels, I would go with her…  I was 100% set on that.  In my head I had a clear plan.  Something else I ask my patients when assessing their level of risk about suicide and intent.  Have you made a plan?  Do you know how you will do it?  If the answer is yes, then the risk is high.  And that was me.  I didn’t tell anyone, not until right now as I type, no one knows this.  But yes, I was going to end my life if my little girl didn’t make it.  I couldn’t comprehend it, the thought of her not being here, I just could not.  It wasn’t a world I was prepared to live in.  I always have a contingency, and this is the darkest one to date, but I took comfort from it.  I had a way out.