Helen: Hold On

We walked today, my girl and I. Holding hands and but a little at a time. From one sofa to another and around the room.

Small steps. In purple leather shoes. Stripey tights and a shaky walk.

And the five year old watched. Wanting to know when his sister would run. Shout and chase and catch and fall.

By the look of things not long at all.

And I remembered a day, with this boy. 2010  - had I a time machine the last place I would go. A house with a window full of sun - some friends, their children and us. And a babe, I no longer recall which mother or name. But my son held my knees and whispered then, 'One day Mummy we shall buy a baby and he will be my friend'.

And it happened then. When blood rushes and goes to the head. When you lose your way and cry instead. And those around you stop - assuming in an instant it was something that they said.

And I wished - in that moment - that babies were trade. That someone would name me a price to pay. That I'd move on and we'd be whole again.

I can't remember now if we'd lost 4 or 5 babes then.

It worked out - in the end. In our girl. Who for a time I believed was not to come. And in a room with a consultant - a day or so from hitting the wall - I begged that something else be done.

Low dose aspirin. Increase the flow and thin the blood. Proof or placebo I frankly care not. Where others failed my daughter walks.

And lives and breathes and talks.

I grew stronger as those months went by. That which warms your heart and that which makes you cry.

'What's for you, won't go by'.

I believe not - one word of that. But rather, 'what we yearn for may yet be in our grasp'. Through perseverance - and sometimes - the questions we ask.

There is always tomorrow and there is always another door. Today my daughter held my hand and walked across the floor.

Life finds a way - when all has gone wrong.

When you can't hold on? Hold on... x

You can read more about Helen on her own blog All At Sea.

John: Package Melody

This blog post has been taken from the end of a novel John has written that uses his own experiences. His wife, Julz, also publishes on Loss Through the Looking Glass and her own blog Beinghumanish. You can read more of John's work on his own blog Shaven Wookiee.

“Away with you all, dammit!

Mother?

Milk me now please.”

You have no idea how hard it has been to write this. I’ve been putting it off, and putting it off, but now here I am, having finished the novel, and all the internal mumbo jumbo, and now I want, or rather need, to talk about Melody.

We’re coming up to her first birthday (February 26th), and I’ve been wanting to do something myself for her for a while now. This novel is that thing.

As I write this, my wife Julz is pregnant with Melody’s little sister, who was measuring at four pounds at her last growth scan, over four times the size of Melody when she was born. So far, she’s healthy and well looked after by the hospital, although my wife is suffering quite a bit! I hate seeing her like this, but as she keeps saying it’ll be worth it in the end.

So, where to begin?

The beginning, I suppose, would be a good place wouldn’t it?

Melody wasn’t my first child. I had a daughter, Sophie, that was stillborn, when I was a lot younger and a lot less wise. What happened was the reason (or rather what pushed me over the edge) I started drinking.

But that’s a whole other story.

Julie and I had had two miscarriages prior to Melody, Alex and Castiel, and she has two absolutely amazing children from a previous marriage, Leah and JJ. She’s now going to Majorettes every Friday, and he’s still obsessed with trains (just ask him which is his favourite Thomas train, you’ll probably regret the lengthy answer. (Lol, just kidding).

Melody was conceived out of love. I know it’s a cliché, but it’s true. She was conceived on our blessing night (stop sniggering at the back), a special day for so many reasons.

She was trouble from the beginning, with Julie getting Hyperemesis Gravidarum (which is NOTHING like morning sickness as the British press would have you believe). It became worse after a car crash a couple months in, and she started showing signs of early pre-eclampsia a couple of months later, leading to lots of trips to the hospital until near the end of February 2012 when she was admitted until the baby was born.

Up until this point, I was scared shitless. I’d already lost one daughter, and was terrified history was going to repeat itself.

We had a tour of the NICU on the Saturday afternoon, just a brief look at what Melody would be staying in for a little while, and explanation about the sort of care she would have.

That night, Julie’s symptoms got worse and she was taken overnight to the Labour Ward, and I was asked to stay with her, which is unheard of unless something’s about to happen.

The Sunday morning, the consultant told Julie she wasn’t allowed to let Melody out unless she had read ALL the Harry Potter books (she was reading Prisoner of Azkaban at the time). But not long after I popped out to have some breakfast, he took a look at her bloods, and three minutes later returned, telling us he was “booking a cot” for our daughter. Little did we know, Julie was actually dangerously close to fitting because of the pre-eclampsia.

I was told to put some scrubs on (thankfully there are no pictures of that disaster), and some surgical wellies and was shown to the operating room. As a side note, the scrub nurse that was assisting the operation was heavily pregnant and fainted during the procedure! What a great start.

I think I was sweating the entire way through, from the moment the consultant said he would book the cot to when I got home late that night.

I had a daughter. A living breathing daughter. I shit myself. Not literally, but figuratively. Well, okay, maybe a little did come out.

She was put on a ventilator for less than 24 hours, which is amazing given how premature she was, and Julie’s pre-eclampsia and hyperemesis buggered off almost immediately, leaving her with the excruciating caesarean to deal with.

Hated seeing her like that.

Wanted so badly to be a Jedi at that moment, and take her pain away. All I could do was help in and out of the shower, and try and keep her spirits up (which was hard considering certain selfish people couldn’t keep their mouths shut).

The following Sunday Melody had an apnoea scare; we had only popped out for lunch with my mum when we got a phone call to come back asap. They were worried about her SATs dropping, and even started talking about sending her up to Bristol!

Thankfully, though, she bounced back an hour or so after, and she was back to her fighting self. It really knocked us for six, but we managed to get into a routine, coming to the hospital, sleeping at my brother’s whilst he was in Australia (just wish he hadn’t destroyed his fridge before he left); taking the kids to school when they came back from their dad’s; doing the run to the hospital with the milk for her; calling late at night before bed to check up on her.

We had lots of firsts (for me, anyway, Julie’s still managed not to ever do a baby’s very first yummy poop), changing nappies, doing bed baths, changing clothes and sheets, feeding her, and meeting other parents at the NICU with us.

I had just started my blog up not long before, and decided to do a random couple of blogs. Here was the first, Adventures in Poop:

So...

Melody’s now over three weeks old, and we’ve got involved in her cares and whatnot, and I’ve helped (at least a little) with expressing breast milk. We have had a wonderful team of nurses looking after Melody at Musgrove’s Special Care Baby Unit, and I can’t fault them at all. They’ve had us doing her ‘cares’ as I mentioned before; basically, we clean her, head to toe, use cotton bud sticks to clean her mouth and change her nappy! Therein lies the core of this particular post.

Poop.

Pooh.

Excrement.

περίττωμα (Greek).

excrementos (Spanish).

excrément (French).

Baw (Welsh).

pah (German).

Shit.

Either way, there’s lots of it coming from my tiny little daughter’s backside, it’s yellow, and it stinks! Yes, I know it’s supposed to stink, but it’s a bit of a shock when it comes from a person that weighs less than a bag of sugar, okay? When she was born, I had visions of holding her up to the sky and announcing her birth to the world, like at the end of Peacekeeper Wars.

Romantic, right?

Yeah, well, my experience has been somewhat different.

Yeah I know. But I do not begrudge a second. What? Why are you laughing? I don’t! According to the nurse, it’s to help us bond with her, and take the load (pun intended) off the nurses looking after her. I’m not really sure why they keep laughing at me when I say I’ll do her nappy. Is it a man thing?

My wife sat down behind me with a hand pump to express breast milk, and there was a smirk on her face.

This wasn’t the first time I’ve done her nappy, or an all-over bed bath, but what I didn’t know was that my ever-loving wife had already been informed by the nurses (who had sneakily taken a peak at the state of Melody beforehand) that she had a full nappy.

Thus began the Battle of the Poop.

So I opened up her nappy, and all the machines started pinging in random order. I swear it sounded like lasfire. There was some sort of work going on around the corner, one of the workmen using a large hammer that sounded like artillery. So now I’m in the middle of a warzone, and the nurse turns to me and says, “Get into it then,” like some cigar-chomping sergeant.

I felt like I had been handed a rifle and told to storm the enemy position.

I got the old nappy off, full to the brim with yellow alien goop, and was about to put the next one on when she decided to poop on her nice clean towel-bed-thing. I got the next one under her bum and she kept going. Dammit. I looked up and Special Care was gone, replaced by a grassy, muddy warzone. The ping of lasfire ricocheting around me filled my ears and every now and then the artillery would slam through the air and I’d instinctively duck my head.

Then my wife chuckled, and something hit the back of my leg.

I turned to find my wife holding herself and spraying milk on me.

The nurse, chomping on a cigar, said, “Looks like you’re getting flanked!”

Don’t tell me that! Get in a foxhole and help me dammit!

Melody started wriggling and fidgeting, the second clean nappy wasn’t going on properly. Now one of the other babies was crying and the medics were attending to her.

“Jesus,” I thought, “How the hell am I supposed to do this? I’m just a rookie!”

“You’re doing fine, son,” the sergeant-nurse bellowed over the noise, “just dig in and fight on.”

So I did.

The second clean nappy went on, got wrapped. The pings and hammering went on, the warzone going on around me. I had to wipe the sweat from my forehead and shout, “Will someone call in a fuckin’ airstrike or something?”

Then I remembered I was still in Special Care.

Oops.

Melody looked at me curiously, my wife was trying not to smirk, and I swear every now and then the nurse in question occasionally has a half- chewed cigar in her mouth even now.

So I’m mad, right?

What? Why are you all looking at me like that?

*        *        *

Yes, I’m quite mad, as it turns out. But I loved every minute of it despite my hands shaking, and feeling nervous the entire way through.

We managed to get cuddles outside of her incubator, and Julie got kangaroo care (skin-to- skin). Even Leah and JJ got to hold her hand, complete with hundreds of photos.

Her last week was one of extremes.

She had bloods taken (my wife called her a vampire, the big bully), and had another apnoea episode whilst she was being cuddled, going blue and scaring the living crap out of the both of us. And then the day after, she was bouncing around, and actually starting to hold her head and trying to turn herself over, even going so far as to actually start raising herself up a little on her knees. Because of that, I wrote the second blog entry:

Okay, so it’s been a week since the last blog, which has raised a few eyebrows, and raised a few questions:

“Was changing Melody’s nappy that bad?”

“What were you smoking when you wrote that blog?”

“Who the feth are you?”

and

“No, seriously, who the fething hell are you?”

Stuff like that.

Anyways, it’s been over a week since the infamous Battle of the Poop. So, yesterday the nurses had me doing the same thing, full cares, with my wife expressing behind me. I swear since last week the nurses have all started chomping cigars just to shit me up! So, my hands shaking like a blancmange in an earthquake, I dove in. The day before, she had had a blood transfusion, which naturally meant that that day was the day she was epically hyper.

I managed to get through the bed bath easily enough.

And then onto the nappy. I took the dirty one off, wiped her, and she pooped again. Got the second one on, and she pooped loads, all yellow and radioactive.

And thus began the latest episode madness.

I turned my head because my wife had chuckled at the sheer amount of poop. When I looked back, she had gone. There was a rustling sound and I looked at the top of the incubator to see her on all fours UPSIDE DOWN and wearing a Spider-man costume (although somehow she was wearing a nappy at the same time that I hadn’t put on her).

“Uh-oh,” I said.

She nodded at me and then extended her arm out, putting the two middle fingers into her palm.

FWIP.

Spider stuff hit me in the face, and she was swinging away, and out of the incubator, slinging strings of web across the big room.

“Come back dammit,” I shouted. Spider-Melody stopped and turned, and put her hand out again.

FWIP.

I fell back against the incubator, trying to scrape the web off my face. When I did, Special Care had been replaced by a New York skyline.

FWIP FWIP.

The web was slinging all around me as the nurses (curiously dressed in full NYPD uniforms) tried to grab Spider-Melody as she swung around the room. I looked down and realised I too was wearing a Captain’s uniform of New York’s Finest.

“Get after her dammit,” I shouted. “She’s making us look like idiots.”

The nurses all looked at me like I was mad, and I realised Melody (not Spider-Melody) was still in her incubator and looking at me with a little mischief in her tiny eyes. My wife was shaking her head.

“What?”

I swear, though, whenever the nurses change her bedding, I can see a little bright red and blue outfit under the sheets…

*        *        *

Yes, I have an overactive imagination. Have you read my books for crying out loud? This event took place on the same day the paediatric doctors told us our going home date, when we would be able to finally take her home and leave the NICU behind, at least temporarily. It would have been another six weeks, but they were certain, even excited about it.

And so were we.

But then the Thursday, she had the ROP test, where they test babies’ eyes for Retinopathy, basically holding the eyes open and looking into their retinas. The experience isn’t pleasant, to the point where they don’t tell the parents for fear of them watching.

In fact, we discovered that many babies, including several that were in at the same time as Melody, suffer as a result of the test, to the point where the staff are actually worried it might be meningitis. That’s how bad it is! And yet, it happens all over the country, and they know what it does, but dismiss it as the cause of any problems!

Unfortunately, Melody was one of the babies that suffered. Her SATs dropped to the point where they were talking about putting her back on the ventilator to help her breathe.

But she came through it. Sort of.

On the Saturday, we took JJ in to see her as Leah was at a friend’s birthday party; she was back to her normal self, except her SATs kept dropping. But we made plans for Julie and Leah to come in the next day to change nappies and feed her and clean her.

The Saturday night, we phoned up as normal, and were told she was struggling a little, and they were waiting for a doctor. They told us that the doctor wouldn’t be able to see her for three or four more hours (and we don’t know how long they were waiting before we phoned). Her SATs had dropped again, this time really low, and they were once again talking about a ventilator and antibiotics… but they had to wait for the doctor.

We phoned up early in the morning on April 1st (we didn’t get much sleep), and it wasn’t encouraging. Although they didn’t say anything was particularly, we decided to go over anyway, and dropped the kids off at their dad’s. Just as we were about to leave there, the NICU phoned and told us to get over IMMEDIATELY.

Needless to say, Julie drove at 90mph-plus to the hospital.

When we got into the NICU, they had banned anyone else from going in, and put up dividers around her cot.

We knew something was wrong when Melody’s paediatrician came over to us, and the staff were all red-faced and had puffy eyes. They’d all been crying.

The doctor explained to us what had happened in the night, what they had done to keep her going.

For me, history repeated itself.

“She’s not expected to survive.”

Our world came crashing down around us. She had been fine only days before. Julie almost shouted the word, “Why?” Neither of us could understand. I don’t think it really hit either of us until later.

We were shown to Melody’s cot where one of the nurses was keeping her heart going manually with her own hands.

We were sat down, and Melody was taken off the life support and put into our arms.

And for a second time in my life, I watched my daughter die in my arms.

I… I can’t explain what it feels like.

I don’t really want to either, to be honest.

It’s painful, and it still hurts to even think a little about it.

I’ve lost a lot over the years: friends mostly, and some of them not particularly peacefully. I’ve seen people die, and I’ve been physically hurt myself. I know, more than most, what pain is.

Losing a child, you can’t describe it, not properly.

We managed to gather the strength to get our parents and a couple others to come and say goodbye to her before she was taken to the morgue. We refused a post-mortem.

The next morning I was sick everywhere in the bathroom. I hadn’t slept well, and I’d got up early, gone into the bathroom, and just spewed. I think it’s called delayed shock.

For the rest of that day, I was spaced out, couldn’t think, couldn’t do anything. I was sure Julie might slap me. Or leave me.

We had to go and see the hospital chaplain (who I wanted to punch for being so condescending), and register Melody’s death at the registry office (the woman we spoke to actually said to us that there’s always next time).

We discovered that she had been IUGR, which we hadn’t been informed of; we only found out because it was on her death certificate.

We got loads of sympathy cards and hundreds of messages on Facebook and Twitter. My mum insisted on coming back and making us lots of cups of tea, and she did it again on Melody’s Angel Day (we refused to call it a funeral).

We were told at the time that she had had something called NEC (Necrotizing EnteroColitis), although this was revised to an “infection similar to meningitis” after the Somerset Child Death Review panel.

I’m not going to go into how we were treated by certain people, despite the fact that I still want to deck them even now for how they’ve treated us (and still treat us). And I’m not going to go into how Melody should have survived, and why she didn’t.

As we approach Melody’s birthday, we’re both scared of looking in the memory box that Julie’s online friends put together to send to us. We’ve only looked in there once, and that was her Angel Day.

She’s our Angel baby, and our soon-to-be-born daughter is our Rainbow baby.

There’s a ray of light at the end of the rainstorm.

*        *        *

With this novel, I wanted to bring some sort of understanding towards grief and specifically grieving parents. There is a message to it, but I’m not going to start getting philosophical.

Besides, you may not get the same message as I had intended. But that’s the beauty of novels, isn’t it?

With this novel, I’m going to be giving any money I make from it (not just profit) to charity, specifically the Musgrove Park Hospital NICU’s Just Giving, hopefully towards their counselling team.

Claire: Laura's Story

In August 2011 I was shocked yet delighted to discover that I was pregnant with my second child. Shocked because I was 41, and despite many years of trying to conceive, we had no luck despite conceiving our 11 year old girl naturally (and quickly). It was an absolute delight to be expecting again. My Mum had passed away just 9 months earlier after a long illness and my Dad had finally settled into a nursing home suffering from Alzheimer’s disease. Years before we conceived, my GP told me that I was probably too stressed to allow things to happen naturally. I saw this pregnancy as a sign that things were beginning to calm down a little. We were all so excited.

I suffered with awful morning sickness (as I had done with my older daughter Georgia). Despite losing 5kgs and vomiting sometimes up to 7 times a day, I assured myself that it was a good sign that the pregnancy was established and normal.//39 weeks into my pregnancy I discovered that baby was laying in full breech and I made an appointment to go into hospital on Friday 20th April 2012 to try a procedure called an ECV... baby’s position was not discovered by health professionals until late in the pregnancy so unfortunately the ECV was unsuccessful. As I’d started to have contractions, the safest method of delivery all-round was deemed to be a C-section, which was carried out without complication and our precious and most wanted baby, Laura, emerged into the world at 11:35am.

Laura & Mummy

All seemed well, she was a good size 7lbs 3oz and on first inspection perfectly normal. We spent a few wonderful hours bonding but she wouldn’t feed which worried me slightly. I was told that she may be sleepy and mucousy after the C-section and not to worry. We were transferred to the ward where Laura showed the first sign that things were wrong. She struggled to breathe on bringing up some mucous. A nurse whipped her away from me and cleared her mouth and again I was told this was quite common in babies delivered by C-section, so although it frightened me, I wasn’t unduly worried.

My older daughter Georgia was so delighted when she arrived to see us – finally fulfilling her wish to become a big sister. She spent around 2 hours cuddling her and was a complete natural!

Sisters!

Laura was so relaxed and content in her arms. In fact she seemed quite content most of Friday, but I began to get concerned towards the evening when she wouldn’t feed and the choking incidents increased in frequency and became more and more frightening. A doctor was called to see her and at 12:30am on Saturday it was decided to move her to the Special Care Baby Unit where they carried out some tests. Very quickly she was diagnosed with OA/TOF – a condition that affected her esophagus:

Oesophageal Atresia (OA):

In oesophageal atresia there is a break in the continuity of the oesophagus. The end nearest the mouth is not attached to the end which enters the stomach, the gap usually occurring high up in the chest. The presence of a blind-ending pouch in the upper oesophagus means that food is unable to reach the stomach; any swallowed milk or saliva instead returns to the mouth.

Tracheo-Oesophageal Fistula (TOF):

A fistula, from the Latin meaning ‘a pipe,’ is an abnormal connection running either between two tubes or between a tube and a surface. In tracheo-oesophageal fistula it runs between the trachea and the oesophagus. This connection may or may not have a central cavity; if it does, then food within the oesophagus may pass into the trachea (and on to the lungs) or alternatively, air in the trachea may cross into the oesophagus.

Laura was transferred to Chelsea & Westminster Neonatal Intensive Care Unit at 5am on Saturday morning (with her father Enda in tow), and I waited for the Doctor’s on the ward at West Middx Hospital to discharge me in the morning as no beds were available for me to join her at Chelsea & Westminster. At this stage, Laura (despite being on ventilation and IV fluids) was in a stable condition and not in any distress. We were not unduly worried and were assured that the C&W Hospital were very familiar with this condition and performed the corrective surgery required as a matter of course.

Laura & Daddy

Laura spent Saturday at the C&W and we all joined her as soon as I was discharged. On the journey into London we all spoke about how everything would be ok, how we would adjust, how having a child with a disability would pose challenges but that we would overcome everything. We called ourselves the “Awesome Foursome”. I took a phone call from my brother on that journey and he reminded me that the son of one of our first cousin’s was born with the very same condition (it is found in 1-3500 live births). This buoyed us up even more as he was now a happy 30 year old. I rang my cousin in Devon and spoke to his wife who made me feel ever so positive about what was facing Laura.

We were told that Laura was scheduled for surgery the following morning which surprised us a little – surgery on a Sunday? We were assured that she was well and had passed all the pre-op screening and that the surgery was routine (although not without the usual risks), so at around 1am we went home for some sleep to return again at 8am ready to see her before the operation. Again, on Sunday morning she seemed fine. I got to change her nappy and she opened her eyes and looked at us. We eventually said goodbye to her at 12:30pm outside the Operating Theatre and went off to ride out the wait while the operation began. We walked along the Fulham Road, although I was tired and sore following the C-section. We sat in a restaurant and had some lunch, all the time talking about “after the operation”. How would I manage to get into hospital to see her every day when I wasn’t allowed to drive? How would I manage juggling the school run with hospital visits? Would extended family be able to visit?

Laura

Just before 6pm I went to a little room to express some breast milk (finally with some success). My husband & daughter called me with shocked looks on their faces. We were ushered to a room and we were told by the Consultant of the NICU that all was not going well with the operation and that Laura had been resuscitated a number of times (it turns out that they tried to resuscitate for 40 minutes) but was not responding and was going to die. We rushed to the operating theatre in a state of shock and disbelief and stood outside while the life of our little baby hung in the balance. Sadly, tragically, she did not survive despite the surgeons best efforts. It seems that the operation was far more complicated than originally thought... she had two fistula’s and the second one was in a very difficult position up towards her throat. They removed this, but Laura suffered a collapsed lung and cardiac arrest and was unable to regain her breathing. At 6:08pm on Sunday 22nd April 2012 she was pronounced dead.

It is the most awful feeling to be completely helpless when your child is in a grave situation. My heart was well and truly broken on Sunday and I now know what real pain feels like. At no time had we considered that she might not live through the operation. There were babies recovering from the same operation that were 10 and 12 weeks premature and Laura was a full term, (seemingly) healthy baby. We were at a loss as to what went wrong and agreed to a post mortem to hopefully uncover some answers, but the results were fairly inconclusive. They showed that the operation was more complicated than first thought and that her poor little newborn body was simply not able to cope with the strain.

The Chelsea & Westminster hospital were absolutely fantastic – they offered Laura incredible care in her short time there and all the staff were visibly affected by her death. We had a few precious hours with Laura after she died when we could hold her and wash her and dress her and some of the family here in London were able to see her. Nothing could have prepared me for the emotional roller-coaster of one day feeling true elation at the birth of a much wanted and much loved child, and two days later the devastation and loss at her death. My body was tricked – I’d given birth but had no baby.

I don’t think I will ever really come to terms with it fully. Those words “the baby is not responding to resuscitation” will never leave my mind. That memory of buckling at the knees outside of the theatre with my husband and my daughter Georgia waiting for Laura’s poor little battered body to be closed up and handed to us is one that we will sadly share forever. As we walked to the parents’ room with our precious baby in a sad little moses basket, I hoped that 22nd April 2012 was the worst day of my life.

The information on Laura’s condition has been provided by http://www.tofs.org.uk/. They are a charity who provide information and support to families of TOFS babies. They receive no government funding and rely on fundraising and subscriptions to keep running.