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 30^th 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 30^th 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 29^th 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

                                                                         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.

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.

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…..it’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…..it 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.