Balancing elation and sorrow

It is very hard to explain how I currently feel. I am not certain that I really know in truth.

A week on from the death of my lovely little E, I still feel numb. Life in NICU is very strange. Surreal even. My days and nights here are all the same and roll into one. They are an endless cycle of waking, expressing, visiting W, listening to ward round, changing nappy, trying to breast feed, expressing, changing nappies, sleeping, eating, expressing etc etc etc.

The place is an unreal environment in which one operates in an adrenalin fed, sleep fuelled, dreamlike state, and all of the mums here somehow function and seem buoyant despite being physically and emotionally drained. Being defeated by it all is simply not an option. We HAVE to keep strong for our little ones, just as they fight to be with us.. Life on NICU has a dreamlike quality.

As a result E’s short life, lived out here, almost seems like a dream, with her last 48 hours, a nightmare. I almost dont believe that she was here at all, and when I do believe in her existence, I cannot then believe that she is gone, she is maybe just in the next nursery, sucking on her dummy in an incubator still amidst the beeps, defying death yet another time…. So, with my mind being so illogical, self preserving…. I keep on wondering when this will all really hit home.

When we lost our little boy three years ago, it wasnt really until we left the hospital later that afternoon, and walked home along the beach, that we completely realised that he was gone. I remember the hollow feeling, and the bizarre sensation that all around us people were just getting on with their lives, while we were walking home, our world collapsed having lost our son just seven hours earlier, with souls that wanted to scream out ‘STOP YOUR MUNDANE BEHAVIOUR – OUR SON IS DEAD – YOU SHOULD ALL BE GRIEVING TOO’. We felt almost like spectators, like we were standing still and everything was rotating around us. It was as though we were trapped inside a silent film where noone could feel or see us. Noone walking past knew of the aching pain that we were feeling at that moment.

This time, because we are still in the hospital and have W,  who is such an adorable boy who needs our love, care and attention, the grief for E is less forthcoming, and when with W it is impossible for me to feel anything other than joy, euphoria almost. It is only when I am back in our hospital accommodation that waves of grief will suddenly bombard me and I find myself physically aching for my little girl.

It is only a week since she passed, and it seems wrong that I am not constantly in floods of tears, I feel guilty for being happy about W thriving, and I wonder if I am somehow blocking out the pain in order to stay strong for W. Or maybe, the fact that we have cried so many times for her already – whenever we thought that we had or would have lost her during the pregnancy (bleeding, threatened miscarriage, IUGR, reverse diastolic flow..) until her arrival at 28 weeks, is the reason that I am not constantly crying now. Or perhaps I am just accepting the fact that the odds were stacked against her from the start, and that her little body was ill equipped to cope with life and that maybe, the six weeks and five days that I had with her, were maybe stolen hours, death defying days, and an incredible blessing for us and for her. I would never have known her, never have had the chance to love her, to see just how wonderful, determined and sparky she was and she would never have had the chance to be loved, to be cuddled, kissed, washed, stroked, sung to, gazed at adoringly, breast fed, had we not made the decision to deliver our twins.

But another part of me feels ROBBED. All of the dreams and hopes that I had for her have been snatched away from me. I had envisaged pushing the double buggy into town, breastfeeding them together, imagined them playing together in the garden (with E no doubt creating the games and W being the very willing playmate), I had imagined their friendship growing, their first day at school, walking in the woods, climbing trees, me teaching them to read, growing veggies with them, us all singing on long car journeys. I will still have (I hope) part of this future with W, but he wont have his little sister beside him who would have stimulated and looked out for him I am certain, and I feel that it is not only my Husband and I that have been robbed of this perfect future.

I can see how one could get so angry and bitter, because after so many years of trying for a baby, because of having already lost one baby, because of the endless unexplained pregnancy battles and difficulties, and because this pregnancy involved us and our little girl fighting for her life, having such patience, determination and mental endurance, it felt that maybe we deserved to keep her, and that she so definitely deserved to live. She was a wonderful baby and it was clear from the moment that I met her face to face that she would have been a wonderful adult, an asset to this world. I dont think that she and I would have got on as well as W and I, she would have challenged me more I suspect, but my goodness how I loved her. It makes no sense that a person so evidently special and who tried so very very hard for it, should now not have a life. 

BUT I dont think that it is useful to ask ‘why me?’, ‘why her?’. It is almost just a case of having to accept the inexplicable injustice of it all as there was no good reason as to why, of all of the babies in the ward, E caught NEC, why, yet again, I have had to hold a dearly desired and deeply loved baby in my arms as they died. It simply ‘is’ and trying to rationalise this would only lead to  introspection and insanity.

In one of my more upbeat moments I laughed with one of the consultants that I must have been Genghis Khan in a former life, and she said that she hoped that I had really enjoyed being bad… I am no angel, nor do I purport to having been, but to think of this as punishment for former misdoings would be foolish.

I suspect that grief for my lovely little E will hit me when I leave the NICU, when, (hope above hope) we take W home, and when we re-enter the house with one baby, not two, and when we pack away the clothes, toys and friparies intended for her.  We will then have films and photos of our two babies together, of the four of us when we had our Mother’s day family cuddle, of the smell of her on the clothes that she wore, to help us remember the precious moments that we had with her. We will have to accept the inexplicable, and in future accept that little milestone moments, birthdays, first day at school for W will be tinged with a little sadness that E isnt there.

The words of the Kirty Macoll song ‘thank you for the days’ keep circulating in my head.

‘Thank you for the days, those endless days, those precious days you gave me, I bless the light that shines on you, believe me, and tho you’re gone, I dont regret a single day believe me.’

Kindness and follow up

The thing that has impressed us over this not so Happy Easter weekend is the kindness of the staff here. Not only are the doctors, consultants and nurses very competent (watching them work to save E was amazing) but they are also very kind.

Since her passing on Thursday, so many nurses and doctors have hugged us, told us of their disbelief about E’s death, many of them (in particular those who looked after her) in tears.

The way that E’s passing was facilitated, so considered and patiently, showed great kindness to both her and to us, enabling my husband to hold her, then enabling her to die in my arms, so that she could hear my heartbeat, feel my skin and warmth against her. Then some quiet time while we prepared her to be taken away.

Another couple have had bad news this week. Their baby is terminally ill and only has a few weeks to live. Today, the nurses organised for them to take their baby out of the unit for a walk by the seafront. He was taken to the seafront in a transport incubator, moved into a modified pram with oxygen cylinders cunningly disguised below it so that they could walk along by the sea (with a doctor and nurses walking discretely a few metres behind). I found this level of emotional consideration really overwhelming – over and above the medical care that one would expect.

Consultants and nurses have hugged us told us how much they hate NEC, told us that they had become fond of our lovely little ‘Mini but Mighty’ and how they all thought that she had escaped her risk factors, got past the danger zone and was on the journey home.

We discussed E’s case with the Consultants, who thought that this was probably going to happen at some point, and that maybe we were lucky not to have lost her in earlier episodes when her tummy inflated. Ultimately, they thought the arteries to her tummy just still weren’t developed enough to support the stomach enough against NEC, due to her original growth restriction and reverse diastolic flow. NEC could have been triggered by increasing her feeding, the blood transfusion that she had the day prior to becoming ill, a build up of gaviscon administered to avoid her terrible reflux, or just an infection. She could have survived had her duct not opened but the PDA was triggered by the infection. However had she survived she could have had other issues such as severe disability or brain damage from the acidosis.

They also told us that had she passed in utero at about 28 weeks, and had we not made the decision to deliver our babies at 28 weeks in order to give her a chance, there was every likelihood that, as her placenta broke down, I would have gone into premature labour with W anyway, or caused him to be very poorly when delivered, if later. He already had something in his lungs when he was born. They said therefore that we could have lost them both had we not made the brave decision to deliver early. We asked whether they were saying this to soften the blow, but they said that no, these would have been genuine concerns.

So perhaps W is our little miracle, and maybe his sister was born to protect him, rather than the other way around. All that we can do is cling to the positive scraps that are thrown to us.

Mourn-day Thursday

At the time of writing my last post, W had a cold (significant in premature babies) and E was about to have another blood transfusion.

The next day, E was much perkier. I changed her nappy; she was dressed in a mint green tiny baby vest that she was wearing as a little dress. I held her hand (or rather she grasped my finger) and then she lay on her back with a cushion under her head, waiving her fingers elegantly in the air – a fairy-conductor, while I obligingly held her dummy in situ for her while she sucked with a vengeance.

I waited until the consultant completed the daily ward round before going to see W. Plans for E were to take her off optiflow and move her onto the less intensive nasal canular, which, if she sustained it for two days would mean that she could be moved into nursery 3 with W. As she had grown and was now 2lb 7oz (more than double her birth weight) her milk intake could be increased by 2ml every two hours. After a top to toe inspection, which she didn’t much enjoy, (and during which another dirty nappy was revealed) she was declared fit, so I scooted round to nursery 3 to see the boy.

I arrived just in time for ward round. W was looking extremely pale and on inspecting his nappy, it seemed to have GREEN poo. A blood test was ordered to check his haemoglobin and a stool sample sent off for cultures. The nurses were told to take precautions in case he was infectious and we were told to be careful not to cross- contaminate E, so best not to have cuddles today.

I expressed and popped back to nursery 2 to see E for an hour. She was off the nasal canular and in the incubator in ambient oxygen – as she hadn’t required any oxygen on the canular. This was great news as it meant she could be with her brother in nursery 3 within 48 hours. She seemed very restless, and I wanted to hold her, but thought better not to due to warnings re W and cross contamination. So instead I just stroked her hand and held her dummy for her. I returned to sit with the poorly boy for a little while and changed his nappy. More green poo… The bloods returned which showed a slightly increased infection rate and a low haemoglobin level. An hour later he seemed quite peaceful so I want back to sit with E while my Husband went off to run some chores. I noticed that E was breathing quite heavily and her saturation levels weren’t that great. I asked the nurse about this, who suggested that she was probably tired due to all of the autonomous breathing that she had been doing. She asked another nurse and they agreed that they should put her back onto optiflow for an hour or two. An hour after being on optiflow, her saturations still hadn’t picked up and she was requiring 35% oxygen support (more than ever before). The nurse called a doctor in, who decided to take bloods gases. The results weren’t good: high levels of C02, so a second registrar appeared and inspected E. It was immediately clear that her tummy was puffy and veiny and her complexion was starting to look a little mottled. A consultant (who is not the easiest to warm to initially as she tends to ‘perform’ and be a little remote, but is an amazingly meticulous doctor who you would want to be in charge on a night like this) was called and said that she would take E back into nursery 1 for observation and if needed she would be ventilated to help her combat whatever it was. She said that they would immediately give her a canular and start her on a course of catch all antibiotics until they knew what was going on. We were told to wait with W while she as moved.

An hour later the same consultant came to see us and said that as her tummy was puffy and putting pressure on her lung it was better to ventilate her to allow her body to focus on fighting the infection in her tummy. Again we were told to wait until this had been done.

Another hour later, she returned and told us that in her opinion E had NEC. NEC (Necrotizing enterocolitis) involves infection and inflammation that causes destruction of the bowel but is not well understood. It affects about 5% of pre-term babies http://kidshealth.org/parent/medical/digestive/nec.html. She continued that E could be stabilised and that the infection would tick over gently and that the surgeons would come and see if surgery could help her in the long term, OR that it could escalate and be voracious. She said that they were just doing a few more things to stabilise her and would then bring us into see her, ‘but’ she warned ‘she looks pretty ghastly’.

We waited for a further two hours, getting increasingly nervous, and were then called in by another consultant, who is very sincere and kind. We had our hearts in our mouths and I felt physically sick to see our beautiful little E, lying sideways on in her incubator, canulars in every limb, a long-line in her head, ventilation tube in her mouth and her sweet little body swollen to twice its size. She was almost purple and had a dark belly with shiny stretched skin. She didn’t look like our little girl and she didn’t look as though she was alive. She was on the oscillator so her whole body was vibrating and there was a sickly smell that reminded me of the day that our little boy H died. It transpired that she had been paralysed to try to stop her fighting the doctors as they ‘intervened’ putting in lines and ventilating her.

Two consultants, two doctors and one nurse were working frantically but methodically. The gentle consultant told us that they were concerned that this was ‘a battle that they may not win’. We just felt helpless and powerless as she was filled with fluids, FFP, blood, antibiotics, glucose and given bicarb to reduce her C02 levels. Bloods were taken every twenty minutes, only to see her lactic acid and C02 levels steadily worsen. At2amour consultant said that if the next set of blood gases weren’t better then it would be better to stop treatment as the level of acidosis may already have caused brain damage. She said that we should be ready to hold her and say goodbye.

We just sat and prayed and held our breath.

When the next set of gases came back, the acid levels had reduced, so the team decided to keep trying to stabilise her. By6amshe had been stabilised. At 7am the surgeons arrived and explained that the would take her for surgery later that day to see if anything could be done to reduce the inflammation to take the pressure off her squashed lungs. There was a real risk however that she wouldn’t survive the transportation to theatre, or the operation, or the trip back. They explained that they would cut her tummy from her belly button to her hip, take out her intestine and see how extensive the damage was. They may remove sections of the bowel if any had started to rot. We signed the consent forms knowing that this was her only chance of survival.

At1pmshe was wheeled away in the transport incubator after we told her that we loved her and had stroked her little swollen legs and hands. One of the consultants called us 15 minutes later to say that she had made it to theatre and was stable on the ventilator. We went and sat with W and waited. An hour later we were told that E was back from theatre and had survived the operation. We felt a huge wave of relief and the nurses who had taken her to theatre looked very positive. A nurse came and told us that they had removed a jugful of waste products from her tummy.

She looked so much better, her body was still swollen but her tummy was deflated and looked more pink, although there was a scar across her belly and a stoma had been inserted on her right hand side. She was being pumped full of morphine and several other medications, but when I spoke to her she still twitched her hands and legs in response to my voice.

We now had to wait to see how she would respond to the surgery. The surgeon came and explained that on taking out and examining the bowel and intestines, it was evident that the NEC had affected the whole of her bowels, and although none was rotten, all was blue. They had emptied her bowels as much as possible to reduce the inflamation and enable her lungs to function, in the hope that they would then be able to pump blood back to her tummy and restimulate them. It would be a case of wait and see, to discover which way the infection went. Her bowels could be reoxygenated as the inflammation came down and blood returned to the tummy, or it could be too late, and the bowels could give up.

My husband & decided that, not having slept for 36 hours, we would do shifts – 3 hours sleep each and 3 hours with E. We each sat and spoke and sang to her, watched her, held her little hands.

Things looked up. E was moved off the oscillator and onto the ventilator and was in air, not requiring too much pressure to operate her lungs. Her tummy was pink again – not dark and blotchy any more.

However, a t5am, her blood pressure began to dip. The doctors started putting more fluids into her and another x-ray of her chest and tummy was taken. This showed that although her bowel was no longer inflamed her lungs were hazy. It implied that her lungs were receiving too much blood to them. Another scan of her chest revealed that she had a PDA, with the valve reopening due to stress and infection. This meant that blood was starting to flow from her heart to her lungs rather than enabling general circulation, which was not what her belly needed and was muddling her blood pressure.

One by one the drug infusion pumps that had been being removed throughout the night began to reappear as her blood pressure dipped. At11amE was put back on the oscillator and seemed a little more stable, until1pmwhen again the tide turned and she seemed to deteriorate. The consultant in charge performed and ultrasound and then she, the surgeon and the nurse looking after E asked to see us.

My husband and I decided this meant one of two things:

1)      the bad news that E needed surgery to remove part of her gut or

2)      the terrible news that her gut had died in its entirety.

We were desperately hoping for the former. We sat in the bedroom that we had been temporarily staying in while the consultant in charge explained that in fact E’s gut had been destroyed by the NEC and the surgeon sweetly told us that no more could be done. We would have to turn off the life support systems and ventilation.

My husband and I managed to hold it together (just) and asked when they wanted us to do this, and if we could cuddle her before and during her passing. My husband hadn’t yet had a chance to cuddle E during her 6 weeks and 5 days of life. They said that yes, it was all doable, and said that we could do this in our own time. They left the room and the second that the door closed, we wailed.

My parents were due to arrive with a few supplies for us and we updated them. We decided that it would be nice to have E blessed and so called the vicar who performed our wedding for us and who buried our little boy previously, to see if he could come to the hospital. We asked the medical team if after that, my Husband could have a cuddle, and then I, and if they could then take out the canulars and wires and finally her ventilator while I held her skin to skin, so that she had the comfort of feeling me holding her and hearing my heartbeat as she died.

We spent the next couple of hours with her until the vicar arrived. He christened her, which was lovely and prayed for her onward journey. Then, at about8pm, we arranged ourselves behind a screen, and E was carefully moved out of the incubator and passed into my husband’s arms. We both cried and he spoke to her for fifteen minutes. I then manoeuvred into position so that she could be moved into my arms. A few of the nurses came to say goodbye, most in tears. One who remembered our little boy said ‘there’s something just not right when this happens twice’ a sentiment that we felt deeply.

Claire, a super competent nurse and very calm in this situation (at least in front of us) moved E to me for a skin to skin cuddle. I sang her a few songs and told her just how loved and precious she was, and how very brave she had been. Then Claire returned and one by one started to remove the canulars and lines and then finally the ventilator. She helped position E so that she was upright on my chest with her head on my breast and her tummy against my tummy. I held her close and stroked her back for a few minutes. My amazing little girl still tried to live, kicking and trying to breathe and I tried to hold and calm her. We told her that it was okay, she could stop fighting for life now, and could have a long and lovely sleep. A few minutes later she gave up her fight and was at peace.

The Consultant in charge came and listened to her heart and confirmed that she had died. I swaddled her and my husband and I carried her along to a side room where we made some hand and foot prints and gave her a bath, dressed her in a little baby vest and had a final cuddle each before tucking her into a Moses basket for her to be taken away.

Then we cried.