Sunday, 12 January 2014

Our Christmas Miracle

After my 'perfect birth' things went slightly downhill. Then they got a bit worse, and a bit worse, until I was screaming in a neonatal intensive care unit and considering calling the police. Then they got better, almost 100% better in the course of a 5 minute conversation at midnight on Christmas Eve.

This story is really hard to write. I'm on my 6th draft. I want to not bother anymore, but I also think I need to get it out of my system forever. I just realised that I already started writing it, while it was happening through my Facebook status updates. So I'm going to start with them, and flesh out the details as I go...

23rd Dec 6:00am

 I just gave birth to a 10lb 6oz baby in my living room! (Boy2) was born in the water at 2.30am and is perfect, humongous and very hungry.

 Written from the labour ward where I had just been stitched up and we were waiting for Boy2's check up before we could go home. I was blissfully happy cuddling my boy but desperate to get him home and into our bed. After this status I got loads of lovely comments, congratulations and messages of love from everyone I know. It was so close to perfect and I felt lucky that everything had gone so smoothly and that the only thing wrong was I had needed stitches and a bit of extra fluid.






Proud new parents, blissfully unaware of what was to come...


 3:00pm

(Boy2) is on special care baby where newborn mothers and their babies are expected to bond and breastfeed on armless plastic chairs for 12 hours a day and then sleep in separate rooms at night. At a pro-breastfeeding hospital. Nice one NHS
B2's check up had been fine, but at the last minute they decided to check his PCV (packed cell volume - a measure of how much haemoglobin is in the blood) and found it to be dangerously high. I wasn't feeling so lucky anymore.

They took him to Special Care where they had assured me there was a 'rooming in' room that we could use, so I could stay with him. When they were taking him away I was being shown how to express milk for him. I asked for them to take BoyDad with Boy2 so he wasn't on his own and they reluctantly agreed. So BoyDad got to be there while they repeatedly failed to cannulate our tiny new baby and they didn't even let him comfort him while it happened. When I arrived it was clear that the unit weren't used to parents who actually expected to be close to their children. I couldn't stay next to him and he couldn't be moved to the room that I could sleep in... but I was welcome to breastfeed him as often as I wanted, on a plastic armless chair after approximately 33 hours without sleep and a body that had just given birth to a 3 month old baby.


Their reason for separating us was that he had a cannula that nurses 'needed to keep an eye on' (once an hour) and the rooming in room (next door!) was too far for them to come (once an hour for 30 seconds). He needed no other nursing, he wasn't on any form of monitoring and they weren't doing regular (any) observations on him. In fact they didn't even check his cannula hourly, I checked it more than them! I was livid... And about to get livider.


Too much haemoglobin = bright red baby!!


5:00pm

"You can't use your phone in here it interferes with the sats machines."
NO IT DOESN'T! (See!? I'm using it now!)
The kind nurse who had explained the stupid room rules took pity on me and found me a comfy chair to put next to his cot, a footstall and had shown me where I could make cups of tea. I was starting to almost like her, despite her refusal to break the stupid room rules. Unfortunately she then proceeded to tell me of yet more stupid rules that didn't make sense and she wouldn't break for me. Firstly, no visitors except Grandparents between 2-3pm. (Including siblings!) So if we were still there by Christmas Day it was going to be a pretty lonely one for me! Secondly, no mobile phones ON THE WARD. The entire ward. Seriously. Come on! Mobiles do not interfere with basic monitoring equipment like sats machines and IV pumps. I know this because I work in one of the best hospitals in the world and if they don't think it's a problem, it ain't a problem!

6:00pm

"Hey, look on the bright side, you can leave the baby here and go home for a bit and the nurses will look after him for you!" Said the doctor without any children (or brains)
This speaks for itself. I hated that doctor. I had been arguing with her about the stupid room rules and how tired I was and needed to lie down (with my baby near me). She didn't get it. AT ALL.


11:00pm

After promising that he could sleep next to me if his blood results were better, (Boy2)'s blood results are better but they're going to leave him in separate room anyway. (To make life easier for the underworked idiot nurse.)
I made her promise to wake me if he so much as stirred in his sleep so I could feed him (which btw will help his blood results even more!). She promised. I came back 5 mins later,  (Boy2)'s screaming in a soaking wet babygrow and she's looking for a DUMMY for him.
So I will not be sleeping tonight. You can go 48 hours without sleep right?
BoyDad had had to go home to be there for our Christmas Tesco delivery (and tidy up all the blood soaked towels from the birth!) so I was alone on the ward with my baby, a tiny premature baby in an incubator and a nurse who had obviously been 'warned' about me and answered all my questions with 'you need to ask a doctor in the morning'. The consultant had assured me that if his blood tests were better by bedtime we could take him off the drip, he could sleep in with me and we could go home in the morning. They took the blood and it was better, but they didn't trust the result and no one was available to re-do the blood test. I was disappointed but glad the result seemed positive and was sure we could go home first thing.

Looking a bit less red = baby on the mend!

24th December 1:00am (Christmas Eve)

Kicking up a fuss
I was tired. Not the sort of 'new baby' tired I am now where my sleep is a bit interrupted, but nauseatingly, room-spinningly, 'no sleep for 2 days and just given birth' tired. I couldn't sleep because I didn't trust 'dummy' nurse to wake me when I asked her to and I couldn't really understand why they hadn't stopped his treatment when they said they would. I started to worry that no one was really overseeing the junior doctor and that they could be harming him by overhydrating him. The consultant had said they were treating it very aggressively, with more fluid than they would use for most babies but since he was big 'he could probably cope with this amount for a few hours'. It was now 10 hours later and they weren't planning on turning the fluids down or off until the morning. I asked the nurses and they didn't know (ANYTHING). Nor could they get hold of a doctor. I went mental. I was crying and a bit shouty and really, really scared and no one knew enough to reassure me that they were doing the best thing for my baby. I really feel for the nurses from this shift because I know (and I knew then) that you can't magic a doctor from thin air. They were busy with more important things than reassuring me. I didn't want to take them away from the other sick children, but well, actually... I suppose I sort of did.

6:00am... Christmas Eve!

This morning I feel like I did too much at the gym yesterday. Think I must've been squeezing BoyDad's arm pretty tight during labour!

Clearly a bit more cheerful by this point. A lovely doctor had come to see me in the night and explained all about the fluids and it all made total sense. I was also pretty sure that we were on our way home. Just a repeat blood test to confirm the findings of the one last night and we'd be off. After all, the results were fine last night and he'd had an extra 12 hours of treatment to reduce his PCV even more. I could taste the Christmas pudding already.

7:00am

Uh oh. I have a reputation... Was greeted with. "So you're the great ormond street nurse are you?"... Translation: "so you're the annoying know it all parent who questions everything we do are you?
 This was the doctor who took the blood ready for the results to be seen by consultant on ward round. She took his blood, wished me a Merry Christmas and we chatted about how lovely it was going to be to be home for Christmas...

7:30am

Not getting out this morning. Blood much better but still not "better"
Same doctor came to tell me the results. She said they'd retest at 4pm and she was on the night shift so WHEN his PCV was OK she'd let us go (any time of the day or night). Once again I was disappointed but it seemed ok. It was just another few hours. We'd be home for Christmas with our babies.

7:35am

Ward sister: you can't use your phone in here it interferes with equipment
Me: what equipment? These machines are the same as the ones at my work and they are not effected by phones

Ward sister: some hospitals think they might effect the technology

Me: but they don't. That's ridiculous.
Ward sister: look, there is a sign on the wall that says no phones.
Me: Ohhh a SIGN?! I didn't realise!
Come ON. She's a band 7 clinical nurse leader. How in Florence Nightingale's name did such a moronic dimwit get to be a Ward Sister?!

8:00am

It's not Christmas Eve. It's just Tuesday.
Reading everyone's lovely, festive, hungover Facebook statuses, with pictures of stockings and turkeys being prepared and everyone in the world seemed to be having mulled wine for breakfast. I felt pretty darn sorry for myself. Weirdly I didn't really feel worried about Boy2, although I was well aware he was at risk of blood clots in his brain, which could affect his development or worse. Perhaps it was too much to think about that, so I was predominantly worrying about missing Boy1's Christmas and how desperately I wanted to be home, or at my Mum's with family all around me. 

9:00am


New nurse made me tea and toast... She's my favourite so far.
She remains my favourite. She cared about what I wanted and how I was feeling. She sung to Boy2 when I went to the loo or to eat my lunch. She fought for me to be able to continue breastfeeding when the doctors suggested we bottle feed (again).

9:30am 

Consultant (male): the key to breastfeeding is being comfortable and relaxed and in physical contact with your baby. And no stress. Don't stress. Stop stressing about it.
Me: I see... can I go lie down on that bed with my baby and feed him?
Him: no. Excuse me while I shine a fluorescent light at you both and turn up these loud beeping machines and stick pins in your child.
Me: mmmm relaxing

A new and annoying consultant was on ward round. Boy2 already had a treatment plan: continue and re-test at 4pm. This fella wanted to make up his own plan, which involved stuffing B2 with formula for 3 days and also doing extra blood tests for electrolytes. I disputed this as unnecessary and got upset that he was going to force us to bottle feed when 2 other consultants said there was no need to. I cried during the conversation which led to his unhelpful and stupid advice regarding my stress levels. I thought I hated this guy the most, but there was worse to come! (Luckily he backed down on his plan B when I used logic and sense to trip him up.)

5:00pm

Worst news yet. 5 mins ago we were 95% sure we were going home, packing our bags when bloods came back worse than their original levels. (Bizarre and unheard of) so being transferred to another hospital for more invasive treatment. Christmas is utterly cancelled. 
I was beyond sorry for myself now. I rang my mum and spoke to Boy1, who was having an absolutely wonderful time with all of the family. I cried for the entire phone call whilst trying to keep my voice cheerful. The doctors were so busy arranging our emergency transfer for the next level of treatment that no one could really explain to us how on earth his PCV could have increased. The whole condition was supposed to be from him getting too much of my blood during labour and we were just waiting for his body to process the excess haemoglobin. It made no sense that he now had MORE haemoglobin than 24 hours earlier (in hindsight it seems that he didn't and it was an error). 

I thought that this was the lowest point. Things could only get better from here. We were going to a better hospital because our local wasn't equipped to do an 'exchange transfusion' (where they take a load of his blood and swap it for saline). I was sure the next hospital would be more progressive and have less archaic rules and regulations, and there was no way that he could still have a high PCV once they'd taken 20% of his blood! I was incredibly sad we were going to miss Christmas and that he was still poorly but at least this whole thing was finally going to end (and we were getting out of the much hated SCBU.) We even planned Christmas dinner in the new hospital's canteen with my parents and Boy1.


7:00pm (It's still Christmas Eve out in the real world)

Waiting for bed in better hospital. Anyone at work wanna convince one of our docs to take us? He just needs a transfusion and close obs. We'll sneak into HDU Right or bed 16 no probs...
The two best hospitals nearby were full. I work on a Neuro ward in a hospital miles from home, so this wasn't a serious request. There was no way we could go there, but I would've given an arm and a leg to be under the care of nurses that I know and trust!

9:00pm 

Merry Christmas :(


This is Boy2 in the neonatal intensive care transport incubator, about to be put in the ambulance. He had to be starved for 2 hours before the transfer (more stupid archaic rules), it was an hour late and then they faffed around putting an unnecessary new cannula in his arm so he was desperate for a feed by this point. This was a low point.

9:15pm 

The neonatal transfer doctor is right grumpy cos she's working Christmas Eve. Poor grumpy arsed doctor, how terribly awful for you.
... True story. She ACTUALLY moaned about working Christmas while my brand new baby was being rushed to have his blood drained because the risk of him developing a brain clot was dangerously high.

11:00pm


New worst news ever. Not even allowed to stay with him anymore!!!


We got to the new unit. It was an intensive care unit (which no one had told us - he only needed a level 2 unit but it was the only bed they could find). There were no facilities for parents to stay in the hospital, let alone on the ward. We were told to go home. They wired Boy2 up to an apnoea monitor, ECG, sats machine and put him in a proper NICU incubator. (They hit his head trying to get such a giant baby into the incubator designed for premature babies). They refused to let me feed him and the nurse said "shall I put his NG tube in now?" within 30 seconds of us arriving. (An NG tube is a feeding tube through the baby's nose into their stomach - it's for babies who can't feed normally. Not my breastfeeding champion baby!)

The world's stupidest nurse took me to the 'expressing room' where she gave me an electric breast pump (less than 48hours after I'd given birth, my milk hadn't come in - what I needed was a syringe to hand express colostrum). She told me he'd be formula fed because he looked dehydrated and because I wouldn't be able to feed him once I'd gone home. (He didn't look dehydrated, he had been OVER hydrated for 36 hours!) I could have literally thumped her stupid face. She was the worst. She should lose her nursing registration for idiocy, lack of tact and a total misunderstanding of what a normal baby is.

I was in tears and incredibly angry. I didn't know what I could do to make them let me stay, but I knew that I wasn't leaving my baby here. I contemplated calling the police if they forced me to leave. (This makes no sense and I knew it but I had to have a plan). I stormed out of the expressing room with the idiot and went to see the doctor. She was nice and seemed to realise that I was a force to be reckoned with. I was doing a fair bit of shouting in the middle of the night in a ward full of premature babies. I'm not proud of that. I think they agreed to let me stay on the ward overnight in a chair (or something like that). But I'm very happy to say it didn't come to that!...


12:00am Christmas Day!





Oh MY GOD!!!! Look what happened!!!

12:05am

1. Get transferred for emergency blood transfusion
2. Arrive at intensive care unit, have baby ripped from arms and covered in wires
3. Get told to go home (without baby)
4. Get new blood results
5. GO HOME WITH BABY!!!!

HAHAHAHAHA! Best Christmas present ever!!!!
While I was busy shouting in the NICU, a doctor came back with the latest PCV results. They showed that his haemoglobin was not only vastly reduced from the last test, but was actually within NORMAL limits. They said that this was great news so we could go home in the morning. We refused and said that since there was nothing at all wrong with our baby anymore we would be going home now. The nice doctor (who realised she wouldn't be able to get us to stay) agreed and let us go home 10 minutes later. It felt like an actual miracle.

1:00 am

I think I just hallucinated the worst 48hrs in the world.

We were home! BoyDad set to work preparing Christmas dinner and 8 hours later Boy1 came home to the best Christmas present he will ever get. Despite being beyond exhausted, emotionally drained and still in shock, it was without a doubt the best Christmas ever.


A huge thanks to everyone who commented on these statuses at the time and sent texts and emails of support. It still makes me well up to think about how kind and concerned everyone was. 





 

7 comments:

  1. Whoa you have been through the mill - shocked at some of the comments made to you. Yes go home and have a nice rest and leave you baby here WTF!!
    Very very glad you got home for Christmas day xxx

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  2. Thanks Katie. Yeah pretty shocking how thoughtless people can be! Thankfully it all seems like a bad dream now :) x

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  3. Oh my god, I can't believe how stupid (sorry) some people can be! I too, would have been livid, most likely I would have lost it on one, two, maybe even three of the nurses and a doctor. I'm glad you held your ground and stayed with your son, goodness knows what would have happened if you didn't. Have you considered writing a letter, even sending this blog post to the Hospital administrator? It's a thought.

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    Replies
    1. Thanks for your comment. I have thought about it but the whole hospital has such an ingrained culture of treating the illness and not the person that I don't think anything could change it. I just want to move on from it now really.

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  4. TwoBoysOneMum6 March 2014 12:19

    Thanks. It was horrid but so many people go through LOADS worse! X

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  5. Hattie Hodkin28 March 2014 02:57

    Oh gosh I just cried through all of that! Sounds similar to my experience of my boy2's entrance, he had pretty bad jaundice and had to stay in for a week. They fitted an NG tube and had me feed him breastmilk down it (even though he was feeding perfectly fine??). We managed to get out of hospital at 10pm the day before my boy1's second birthday. It was emotional! x

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  6. TwoBoysOneMum28 March 2014 13:28

    Aww sorry you had a rough time too! Xx

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