The Bereavement Pathway

So here we are. We’ve landed on a path that no one wants to get on. This is the official term for where we are in the system. James started a blog to help keep people near and far in touch with Elijah’s progress. It became to us, much more than this. I think it helped us process what we were experiencing, maybe it didn’t. Maybe it distracted us and stopped us processing. It certainly did keep people in touch which where we had all got to, and it also helped James and I manipulate a wonderful community of support (near and far).

So I find myself turning back to write. Maybe I want to distract myself. I am well aware we’ve left people hanging. This page turner ended abruptly with the outcome none of us wanted. 

I feel like I shouldn’t be able to write. I feel like I should be wailing constantly. “Should” is a horrible word. As James tells me, “there are no rules.” But, I’m going to write, whether I post it is another matter, but it might help me organise my very busy head. 

We are obviously devastated. When I look in the mirror my Grandmother Annie is looking back at me, I have her eyes right now. We are certainly in shock. It is coming in waves. But we are eating at odd times of day, and we are shattered, so we are sleeping too. 

Jonah is sad, and talking about Elijah intermittently. He is sad that he can’t carry Elijah around, and that he won’t be able to teach him things. He was so excited that he got to hold Elijah, but in the same breath disappointed that he only got to do it once. He is asking lots of questions about Elijah’s body (by which it turns out he means his torso, not his arms and legs and head). He is also very pleased today as he has mended his Lego X-wing fighter which has been broken for several weeks. When he left the hospital on Thursday evening he was very concerned he’d left his lego mini-figure in the waiting room. The consultant went and found it for him. 

Amos is saying very little. Although he did tell me at bedtime last night that he misses Elijah. He does love babies, and he had been very excited about the baby coming. For the last 5 weeks, he has been saying, “I can’t believe my baby brother has come already.” I suspect he’s taking more in than we realise. He is also enthusiastically avoiding having eye-drops put in, and punching himself in the “nuggs” every time James or I cry saying “this will cheer you up.” 

They are keeping us busy, and amused. – We’ve had some great help from friends who’ve looked after them for a few hours so we can rest and immerse ourselves in this new phase. 

Cards and flowers have started arriving. Which is very thoughtful. I don’t want to be me right now. I don’t want to accept that the cards and flowers are for me. The flowers and cards  show us even more love, and in time they’ll be part of the process that helps us accept this new “normal.” 

And Elijah? I can’t quite believe he arrived. We didn’t get the preparation and anticipation, and nesting phase. We went from very sick me, to our summer baby arriving in the snow. We went full pelt into Intensive Care. Now, “Intensive Care” – there’s a phrase. Whoever thought of that name was having a good day. It’s been non-stop, full-on care. Whether for Elijah, James and I or the big boys. I can’t begin to accept he’s gone already. 

Thursday night with Elijah was beautiful. I can’t write about that. I can’t bear to look at the photos yet. We are so glad we got the opportunity to spend time alone with him, he was true to form, lively and once again defied the Dr’s expectations. Had he died immediately post surgery or even before he recovered a bit we wouldn’t have spent those precious hours with him. 

There are many things to think positively about. I now have time to tidy away the lego, and we did go to Stannage Edge on Friday afternoon which was wonderfully refreshing. But clearly the tip of the balance amounts to very little in comparison. 

The bereavement co-ordinator will contact us on Tuesday and then we’ll start the process of working out how to celebrate that beautiful little rascal. We’ll keep you informed. 

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Elijah Joakim Halse

Elijah died peacefully in our arms in the small hours of this morning. A head scan yesterday showed his brain had been extensively and rapidly damaged due to his illness prior to surgery. There would have been no hope of getting him out of intensive care. The only right thing to do was to move to palliative care. With no hope, it would not have been fair to put him through any more. His big brothers came to hospital with their maternal grandparents to cuddle him. Once they had left, he was given enough morphine to keep him comfortable, all his wires and tubes were removed and Jenny and I held him for hours. He was and always will be beautiful. I can’t find the words to describe how much it hurts. We’re still so raw. May be I’ll write more at a later point. We will regroup. Our heartfelt thanks to everyone for all manner of love and support we’ve received in the last 37 days.

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The Dove Study

Elijah continues to recover as well as we could hope from his surgery. Many of his drugs have stopped, his morphine is coming down gradually and the amount of support he is getting from the ventilator has reduced. Tomorrow he starts very small enteral feeds (via an NG tube) of just 0.4ml of expressed milk an hour to see how his stomach and remaining small intestine cope. He had an eye test yesterday which we were advised not to watch. If you’re wondering how to ensure a tiny baby keeps its eyes open in order to test its eyes, think A Clockwork Orange. Breathing in too much concentrated oxygen can lead to myopia and even blindness. When Elijah was extremely ill prior to his operation, he was on 100% oxygen for a about 2 days just keep him alive. As far as they can tell, this does not appear to have damaged his sight. He will have another test in a couple of weeks time.

Despite Elijah’s good progress over the week since surgery, Jenny and I remain distinctly edgy – not without good reason. We don’t quite trust him since seeing how quickly things can change. As Jenny alluded in her post yesterday, I’ve been browsing a few papers about nec and surgical short bowel syndrome. Survival rates for babies with conditions similar to Elijah’s vary from study to study, but seem to be mostly in the range of 60 to 95 per cent, although in almost all cases the sample size is very small (c. 20). However, the worry for us is the ongoing risk of being on parenteral nutrition (intravenous feeds) which is associated with infection and also liver disease. We have to be prepared for some set backs along the way, but hope that he gets through them with the help of the team looking after him.

When Elijah was born he was recruited for something called the Dove Study.  Researchers plan to analyse the faeces of 1200 babies to see whether there is a chemical change in the poo of those who go on to be diagnosed with nec. The hope is that it will be possible to identify babies with the disease at a much earlier stage and treat accordingly to prevent death or serious complications. We were very happy for Elijah to be in the study – although of course hoped he would not get nec and that his poo would for used for the comparison group. Each time he soiled his nappy (‘diaper’ to our North American readers) we would scrape a bit out using what looked very much like a coffee stirrer from the canteen, and stick it in a pot. Now that he has gone on to develop nec, it might be that something good will come out of this shit.

Jenny: I met the “poo lady” as she referred to herself, recruiting babies to the Dove Study. She later described herself as just floating around the ward. Careless use of words. The implement was a coffee stirrer, from Starbucks.

His reduction in Morphine means he is more alert again, bright eyed, if not bushy tailed. He’s beautiful. He has no cannulas in his arms at the moment, so this means he can put his hands to his face again, and put his fingers in his mouth. It’s great to be able to see him looking more like a baby, than a beached turtle. He’s filthy. They don’t bathe babies until they are 1.5kg, because they can’t regulate their own temperature until that size. They weighed him today and he is 950 grams. Consequently he’s grubby as anything, but I can’t really smell him through perspex.

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“It’s funny how your standards slip isn’t it?”

Elijah is stable. Dr’s are happy with his progress so far after surgery. He’s half the size he was this time last week, due to reduced swelling. He has 3 available limbs now without cannulas. They had to shave his hair to put the one in his scalp, but he can’t wave it around, so it’s a little more comfortable for him.

Our friend Lilly came to visit a few days ago bringing more food parcels, I like to think she looked at the state of me and said, “It’s funny how your standards slip isn’t it?” because that would be someone treating me normally, rather than everyone being utterly utterly nice to me. The very busy nurses stopping to make you a cup of tea and give you a cuddle is unnerving. So a little normality and banter is very refreshing. (The nurses have stopped making us tea now.) Lilly and I chatted about the way you let things slip in the weeks after having a new baby. Doing the school run with toast in your hair, going to a coffee shop with a breast pad stuck to your jeans etc. James and I aren’t having that sort of new baby. We’re shattered, but not because he’s literally keeping us awake at night. Our standards have slipped in other ways. The week before last I was weeping over my birthday, this week we’ve adjusted our standards. When told he had a collapsed right lung yesterday morning, I don’t think I batted an eyelid, he’s done that before, and if the consultant says “It’ll reinflate,” then I trust her that it will. 3 weeks ago in the “milk kitchen” I met a mum who’s baby had had 2 collapsed lungs, and thought I ought to keep my mouth shut as Elijah was doing rather well in comparison. I’m (once again, and I hesitate in writing it) feeling a little better as I’ve started rolling my eyes at people whose babies are over 5lb’s and or breathing for themselves. I am an old goat, but that feels much more like the normal me.

I think I mentioned the other babies in Elijah’s room a few posts ago. Not to be “holier than thou” at all. It is just eye opening to see the shear number of sick and premature babies in the Unit. At least 18 intensive care incubators, I’ve not sussed how many are in High Dependency and Special Care too. There are IVF prem babies and people holding out hope for this their 5th attempt at having a healthy baby. Elijah is really sick, but he’s far from stand-alone in his needs. We are also lucky enough to be so local that we have friends popping in, some people are 1000’s of miles from home, and isolated. We have a whole backbone of support on our doorstep.

So, while he is stable, he is still really sick. Due to his surgery, he’s going to stay sick for a long time. We won’t be certain that he’ll make it for many many months and even then I’m not sure how certain we’ll be. James is obviously looking into this. I am trying to retrospectively fill in maternity leave forms, and still taking photos. Elijah may not know me yet, but I get the feeling he thinks, “I can hear clicking, that round headed woman must be here again.”

I shall put some more photos on flickr. Most are far from pretty, and not for the faint hearted. But these are a record for me of where we were, what went wrong and how far we’ve come again.

http://www.flickr.com/photos/anarchybunting

This evening, with his SATs probe on.

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One month old today

Home, 27 April 2013, 11.00pm

Jenny and I have had to vacate our room at Jessop’s Hospital as another couple’s need was deemed greater than ours. When you only live a ten minute drive from the hospital, it’s worrying to be high enough up the priority list to be given a room there. (Jessop’s is a regional specialist hospital, with people travelling from Halifax, Lincoln, Doncaster etc.) While the convenience of having somewhere private to hide away for half an hour when things get a bit too much, along with the free tea and toast, will be missed, it is reassuring to know Elijah is doing better and it’s OK for us to be a bit further away. We arrived home shortly before 10. It all seems very quiet – especially as the two older boys are with my parents. I’m enjoying a few of the comforts I missed in hospital: beer, wasabi peas, a sofa and being able to write this on a computer instead of a phone.

Elijah is fairly unchanged. He still has a cocktail of drugs going through him although his morphine is being gradually reduced and some of the drugs for his blood pressure have stopped while he is being weaned off the others. He has also had another transfusion of platelets. He needed a new cannula today. Unfortunately the doctor couldn’t get one into his only available limb which has taken something of a bruising to say the least, so Elijah is now sporting a cannula on the side of his head. We are assured it’s not as bad as it looks. He is one month old today, but still not due for another 10 weeks.

Jenny: We have continued to be fed and watered with great generosity by friends. It’s been so refreshing to see a familiar face who’s a friend, and lovely to offer the odd viewing of the Bijou Legend. His survival has become a community effort. Thank you x

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Day 2 post op.

Elijah’s recovering well. He’s more than 48 hours post op. His ventilation settings are reducing, he may come off the ventilator onto CPAP again this weekend. His catheter is out, he’s regulating his own blood pressure, and calm in himself. He has a new long line in his right leg, and has just started his TPN feeding through that line, via a combination of drip and syringe driver. This will go on 24 hrs a day from now until… I’m not exactly sure when, possibly beyond his first birthday. I’ve asked several questions about feeding – thoughts jump into my head, I ask a question, my cogs go round, I rapidly forget the original question and or lose the thread of what they’re saying. The children’s hospital will take us on after Jessops boot us out, they’ll deal with the longer term feeding issues. We’re still living day to day, but thoughts of possible long term issues are creeping on in. ‘How do you feed/deal with a baby who’s crawling while attached to a drip?’ I didn’t get a definitive answer.

I am still expressing milk every 3 hours. I do it in a small windowless room where I can lock myself away. I have to label each bottle with the mothers name, baby’s name the date and time. Since Saturday night when things started going wrong, every 3 hours (apart from middle of the night) I’ve been able to hide away for 20 mins, emerge again and fill in a label that connects me to him, write the advancing date and time, and think ‘we’re still here Elijah, we’re still here.’

He’ll barely need/be allowed any milk because he doesn’t have enough gut to process it, he’ll be allowed a ml an hour initially via NG, and this will increase incredibly slowly as the year progresses, if his gut grows/adapts or tolerates it. The TPN will sort him out for all nutrition. I have no idea at what point his mouth is allowed to get involved. I’ll ask that tomorrow.

His scar and stomas are healing. I’m not exaggerating when I say it’s 8cm wide. It’s from one side to the other. ‘A little like he’s had a Caesarian,’ I say. Cue the jokes about him not being able to Hoover for 6 weeks. But I’ve never had a Caesarian, so I’m told proportionately his is bigger than that. As our friends Anna and Andrew say, ‘chicks dig scars.’

We both dared leave him this evening to see Jonah and Amos. Jonah was weepy, and I think just wants a bit of normality. Amos just said to me, ‘duh, you don’t have to cry about it.’ they’ll be fine, and are being very well looked after by Grandparents. It was hard to see them and come away again, but as things settle we’ll get into a rhythm and routine.

I could write and write and write about all that’s going on in our hospital cocoon, But it’s late.

Our friend Liz shared this link with me today: it doesn’t half sum up the love, care and emotion the staff have ploughed into us and others on the unit in the last month.


nursing the nation

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Better an empty house than a bad tenant

So much has happened over the past few days that we’ve focused on reporting events as accurately as possible. I’ve had neither the time nor motivation to reflect on how Jenny and I are feeling. Now that things are a little more settled and the immediate problem has been dealt with, we are being hit separately by a wave of differing emotions. Jen is doing much better than me at focussing on the massive positive that he is still alive and there is some hope.

I’m getting bogged down by the numbers. After the operation, the surgeon told us the odds are stacked against him, but he has seen babies survive a trauma like this. I’m glad that E is still here and of the opportunity to get to know him better, but scared it will hurt even more if he doesn’t make it. We may have a long and difficult road ahead, but I’ll take a long road over a short one. I’m not sure how we will cope, but I know that we will. I am amazed by the resilience other people show when faced by terrible things worse than this. Now I’m learning something about that resilience at first hand. I don’t know where it comes from – I’m guessing some sort of chemical reaction in the brain (it’s not something I’m minded to research right now), and I know the emotional and practical support of friends and family is a massive help. Knowing that so many people are rooting for Elijah and our family lifts our spirits.

It’s strange reading over the older posts before Elijah got really sick – the little knock backs seem so trivial now. A week ago I was worrying about how we’d get past the next 2-3 months until Elijah came home. Now if he is still in hospital on his first birthday, that will be a first birthday to be thankful for. We knew there was a risk of necrotising enterocolitis (nec), but I never really believed he’d get it. The prevalence of nec among preterm babies with very low birth weight is around 5 per cent. Most things that could have been done to further reduce the risk, like introducing small amounts of breast milk as soon as possible, were done. Yet he still got it. Bad things, however unlikely, do happen. But conversely good things that seem unlikely happen too. For there to be a survival rate, there needs to be survivors. Elijah’s capacity to cling onto life thus far, along with the unit’s expertise in managing children with similar conditions, gives me hope that he will be one of those survivors.

There’s been so much information to take in. After the discussion with the surgeon immediately post surgery Jenny and I came away with quite different understandings of the outcome. We met later in the day with one of the registrars who went through it all again.

Because Elijah is so young, what remains of his intestine has the potential grow and perhaps even double in length over the next few months (as it would if he was in the womb). If he makes it that far, he will have another operation to reconnect the bowel.

He has been seen today by the surgeon and by his consultant. Elijah, true to past form, is doing about as well as could possibly be expected considering what he has been through. They are really pleased with how he has responded. They are hoping to get a new long line into him soon to start TPN feeds. At some point he will need a more permanent broviac line surgically inserted. He is being ventilated normally so would be able to travel to the children’s hospital to have that done. Ventilation wise, he is doing really well. The registrar said if hadn’t had surgery yesterday they’d be weaning him off the vent and putting him back onto CPAP.

Jenny: the phrase which keeps popping into my head is ‘better an empty house than a bad tenant.’ he’s bright eyed and looking around. Much more stable now the diseased bowel is gone. I still have 3 sons today. I can’t knock that. I’m not looking at the numbers, because as the registrar says ‘for Elijah it’s either 100% or 0%.’ As a team James and I will no doubt see-saw between thought processes and emotions…oh, and the surgeon put his thumbs up at me today, so I don’t feel such a twit for doing it to him yesterday. His scar is about 8cm long, the surgeon also said that he’ll be able to show that off when he’s older. So I’ll cling to that morsel for now too.

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Short bowel syndrome

Elijah’s operation did not take long (less than an hour), but since then we have had a lot of information to absorb. I was hoping to be able to write an update offline while I sat with him in recovery, but I wasn’t allowed to use my phone at all.

I’ll cut to the chase. He is still alive. The surgeon had to remove 86cm of e’s bowel as it was diseased and gangrenous. This was most of his small intestine, his appendix and a small part of his large intestine. It’s not a good outcome, but it’s better than the whole bowel being diseased and us now being in a palliative care situation – although that may come. He now has what’s known as ‘short bowel syndrome.’

We find ourselves in the best, worst case scenario. If he survives the next little while, he will be tpn fed for perhaps a year. We are looking at a possible year in hospital, but with life threatening obstacles along the way.

Post operatively, he seems to be doing well. Marked improvement in his respiration immediately due to the release of pressure. We will write a fuller update later. We’re still trying to absorb the information and understand what it means for the road ahead.

He is still alive, and I hope still to get another cuddle one day soon. The acute phase still very much on-going, we have to focus on that for now.

Xx.

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Go for your life

Jessop’s Sheffield, 24 April 11:30am

Jenny here. The surgeons are just starting now. He has 2 consultant anaesthetists, 2 surgeons and at least 4 other people in the team, trolleys of gear lining the corridor. There was a delay while they extubated him to reintubate with a more secure vent tube. His left lung collapsed so we went away for a tea break as we’d been told they may not be able to start for a couple of hours.
10 mins later we returned, and they’re poised to start operating. Taken entirely by surprise I look at the surgeon, stick my thumbs up and shout ‘thank you, go for your life.’

Essentially that’s what we’re all saying to Elijah.

There are many possible outcomes, some very bad but there is some hope.

We won’t know what’s what for a few hours. We’ll update later on. X x love and thanks for all the support, we’re leaning on everyone x

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Slight change of plan

Brief update: 23 April, 6:26 pm
Plan is for surgery tomorrow morning. Normally he would be transported 200m down the rd to sheffield children’s hospital, but due to type of ventilation he is on he can’t be moved so the surgical team is coming here.

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