Meltdown (Project 366 – Day 16)

  
Pre-park meltdown (note the lack of actual tears) because I wouldn’t let that motley crew of teddies in the background tag along. After 10 minutes of tantrum there’s nothing else for it but to whip out the camera and snap a shot to embarrass him with on his 18th 😂. 

Sometimes I’m tempted to just give in to his ridiculous demands and probably too often, I do. Other times I firmly stick to my guns, fearing that I’m raising a brat. Nobody likes a brat. 

In the grand scheme of things carting soft toys to the park is no big deal but I’d said no and he’d had the mother of all paddies. If I’d then relented his cunning little self would believe that paddies = own way. He’s so strong willed, as these toddles are wont to be, and really doesn’t need any of his tactics reaffirming. 

That droning fake-cry noise they’re so good at really is the pits though isn’t it? I’m not the only one coping with this crap, am I?

Tax Hell (Project 366 – Day 15)

I’m pretty sure I’m one of the most disorganised people on the planet. I seem to function best when I’m in a last-minute panic and “the fear” has set in. “The fear” being the terrifying prospect that I’m going to miss the deadline/bus/wedding. All of my best uni assignments were done at the very last minute and any exam revision I did was done the night before. My method works, I get decent results. But it’s bloody stressful. 

Which brings me to today’s photo, which in itself is stressful to even look at: 

  
My husband owns a shop and I do pretty much all of the admin stuff, including the tedious tax return. In true Me style I’ve left it until the last minute, which means I’m now spending every free minute trying to get it done before the looming deadline.

It’s quite handy in a way though because the deadline is just before my birthday, which usually means my husband is so relieved I’ve done it on time that I get a decent present. Win! Told you my method yields decent results 😁.

My Baby’s Broken Heart (Transposition of the Great Arteries)

This is a pretty heavy subject matter for a blog post but what happened changed me, it changed my outlook on life and it changed the way I think and even the way I feel. I  have a need to write about it. So here goes…

Day 1

Newborn Zaki. Not a hint of anything wrong.
 
On 17th July 2015 at 4.48am I gave birth to my second baby boy, Zaki. I’d had a c-section with my first and I was so chuffed that I’d managed a vaginal birth with 8lb 5 Zaki, mainly because it meant I could go home soon and bask in the post-birth afterglow and mist of love that surrounds you when you’ve just had a baby, and be with my two precious boys. Or so I thought.

Everything seemed fine at first. We took some snaps of our new arrival and texted our nearest and dearest to let them know that he’d arrived.

Zaki took his first feed from me. Not much, hardly anything really. But hey, he’d just been born, he needed a rest, so we let him off. When I attempted another feed around an hour later Zaki wouldn’t wake or attempt to drink at all. Not too worried, I told the midwife who was in the room at the time. She suggested we try with a syringe to get him interested and left the room to get one. It just so happened that there was a doctor outside when she opened the door. She asked him if he’d come to check over Zaki. He hadn’t, but he would do, as he was there. I still wasn’t worried.

The doctor started checking over Zaki and after around a minute shouted outside that he needed help. A midwife rushed in. I started to worry. He told the midwife that Zaki’s sats (oxygen saturation levels) were very low. The midwife replied that they couldn’t be because Zaki was “a good colour” and his machine must be wrong. He tried again with another machine; still very low. He told the midwife to get Zaki to special care immediately. There was absolute panic in his voice. I was crying now.

We found out over the course of the next few hours that Zaki had been born with a congenital heart defect (CHD) called Transposition of the Great Arteries (TGA). I won’t go into too much medical detail (if you want to know more this website explains well) but basically two arteries were in the wrong position and pumping blood to the wrong parts of the body. They needed to be swapped over and a consultant who came in especially to diagnose Zaki told us that if something wasn’t done that day Zaki would die. 

 

Zaki being prepared for the journey to Leeds General Infirmary by air ambulance.
 
Zaki was deteriorating rapidly. He was put into an induced coma and onto a ventilator. The air ambulance was called, and he was flown to Leeds General Infirmary within the first few hours of his life. We couldn’t fly with him, we had to say goodbye, knowing that it might be a forever goodbye. Not knowing if he’d be alive when we saw him again. My heart was broken into a million pieces seeing his tiny body in that pod, knowing there wasn’t a thing I could do to help him. I put my trust in the air ambulance doctors who were amazing at trying to reassure us. They told us he was “very very sick but we’ll do everything we can”. The looks on their faces gave more away than their words though. 

We were told that as soon as Zaki got to Leeds a procedure called a balloon septostomy would be performed on him to create a hole in his heart so that the blood could mix and more oxygen would be circulated around his body. 

The rest of that day is mostly a blur. My husband and I made our way to Leeds but I don’t remember the journey. I do remember that I googled like mad to try and find out as much as I could about TGA. I’m the kind of person that clings onto statistics, so I was comforted when I read that 90-something percent of babies born with TGA are successfully operated on and go on to live healthy lives with no need for further surgery. Zaki’s case was more complicated, although nobody knew why until the surgeons actually opened his chest and looked at his heart. But if your baby is born with TGA, the chances are, he or she will be fine.

In Zaki’s case we didn’t know that he had TGA before he was born, it wasn’t picked up at his 20 week anomaly scan and apparently around 50% of cases are not picked up pre-natally. If we had known, Zaki would have been born in Leeds, rather than in our local hospital.

Usually the balloon septostomy will buy time for a baby to grow and become strong enough for heart surgery, around 7-10 days after being born. When we arrived in Leeds we were told that the procedure hadn’t improved Zaki’s sats as much as was hoped or as much as it usually would. Sats should be as close to 100 as possible; Zaki’s were in the 60’s. The doctors couldn’t work out why. 

Day 2

  
The next day was probably the worst because it really hit home what was happening. The doctors couldn’t understand why Zaki was so poorly. A consultant in the Peadiatric Intensive Care Unit (PICU) told me that “Zaki probably wouldn’t survive”. I looked at her blankly. She said it again. I nodded but I didn’t believe her. My brain wouldn’t let me believe her because it knew that if I did wouldn’t survive. 

A few hours later she told us that Zaki was so ill they might have to operate as an emergency that day. It was a Saturday but she had called the surgical team in to discuss whether to operate. She told us that if they didn’t Zaki would probably die but if they did, he was so ill that he would probably die in surgery. I really don’t know how I survived as she was telling me this. I was on autopilot. I was hearing the words but not taking them in. I was responding to her but it wasn’t me speaking. It was decided the doctors would try  everything they could think of to improve Zaki’s condition as much as they could and he would be operated on the next day.

Day 3

Zaki looked so ill that day. His whole body and face were extremely swollen due to the extra fluids that were being pumped into him.   
We signed the consent forms. The surgeon and cardiologist spoke to us as length about the operation and the risks. I only heard “death, brain damage, organ failure”. Through my tears I begged the surgeon not to let him die.

We were told the operation would last around 3 hours. It was more like 9. The longest 9 hours of my entire life, it felt like days. Some people go shopping, go for a meal, go to sleep while their baby is in theatre. We couldn’t do any of that. We didn’t eat or drink anything. We were in a daze. My stomach was in knots, I could feel my heart physically aching. The last thing the doctor had told us was that Zaki was in a really vulnerable situation and that we had to prepare ourselves for the worst.

For the majority of the 9 hours we sat in the waiting area of PICU. The doctors had said they’d come and get us as soon as the operation was over. It was excrutiating and when the nurse finally came to tell us the operation was over I was shaking, through anxiety and sheer exhaustion.

We were taken into a room with the surgeon, a cardiologist and a nurse and it was explained to us that upon opening Zaki’s chest they had found that he had TGA and 2 holes in his heart. But what was causing the biggest problem was his coronary artery, which was too narrow; a quarter of the size that it should have been. That’s the reason he had been so sick. The amazing surgeon, Stefano Congiu, the man I admire more than anyone else in the world, had managed to make it bigger but he had no idea how successful the surgery was going to prove to have been. He’d never performed this kind of surgery before and neither had anyone else. Newborn’s hearts are the size of a walnut, the suture the surgeon was stitching with was finer than a strand of my hair. That this kind of surgery can be performed at all is a miracle to me. 

The surgeon told us that 1 in 4 babies in this situation would die. I immediately flipped that statistic and replied that that meant that 3 in 4 would survive.

While Zaki was in theatre his heart was stopped and he was put onto a bypass machine (called an ECMO machine) so that the surgeon could operate. The ECMO machine pumps the blood around the body, bypassing the heart and lungs. 

We’d been warned that he might come out of theatre still on that life support machine so that his heart and lungs could rest, but he didn’t, which we were told was a very good sign.  But it didn’t last. After about 2 hours the doctors asked everyone to leave PICU because they needed to implement theatre conditions to put Zaki back on the ECMO machine. His heart was too weak after the surgery and couldn’t function, so he needed the ECMO machine to do the work for him while he recovered. His surgeon told us that 1 in every 2 babies in this position would die. Again I flipped it and said “yes but that means 50% survive”. The odds don’t sound so bad when you put them like that, do they?

The ECMO machine is on the right.
   
 

After surgery Zaki’s chest was left open. We were warned that it would be. I could see his poorly heart trying its hardest to beat. Looking around the intensive care bay I could see that none of the other babies or children were in the same situation as Zaki. He was the only one on ECMO, as well as being on a ventilator and an enormous amount of life support drugs. We were told the situation had to be assessed on an hour by hour basis. The number of consultants, registrars, surgeons and nurses caring for Zaki was overwhelming. Each of them really trying their absolute hardest to save my baby. I owe each of them, and the amazing NHS, so much more than I will ever be able to give. 

Days 4-9 

 
Zaki’s surgeon told us that the maximum number of days he could be on the ECMO machine was 10. After that the blood would start clotting and there were other risks that came with the machine that would become greater, such as organ failure and brain damage. Also, in their experience, if a heart isn’t well enough after 10 days of rest, it’s never going to be. Each morning an ECHO (scan) was done on Zaki’s heart to assess the function. Each day we were told there was a slight improvement and that’s what we clung onto. As I walked down the hospital corridor on my way to PICU each morning I would beg and pray to God that the ECHO showed an improvement. 

We were told on several different occasions that Zaki probably wasn’t going to survive and we should prepare ourselves for the worst; that he was deteriorating.  But we always kept the belief that he could fight through it. I never once allowed myself to fully process that I might not be taking my baby home to meet his brother. And he was such a fighter, he always bounced back after each set back, his strength gave us strength. 

After 5 days on the ECMO machine the doctors decided to try to take Zaki off it. It was another agonising wait, this time for 4 hours. But he came off it and his heart and lungs were now working, his body was working, with the help of a ventilator, a dialysis machine and too many drug infusions to count. I was ecstatic, I started to dare to think about taking my baby home one day soon. That night though, Zaki took a turn for the worse. I stayed with him until 4am when his nurse persuaded me to go and sleep and she would call if there was any change. I didn’t get a call and when I called PICU at 8am they told me that Zaki had started to improve again and was doing much better. 

Days 10-17 

   
 Generally, things improved and improved from there on in. We had a few blips, a few blood transfusions, a few bad blood gas results and changes in medication. But we were starting to slowly relax and daring to believe he would be ok soon. His chest was closed 2 days after being taken off the bypass machine and as the sedatives were reduced he became more alert and opened his beautiful eyes on day 11.

  
Zaki was still sedated and on a huge amount of morphine, which was gradually being reduced. The next big hurdle was coming off the ventilator and making sure Zaki could breathe for himself without tiring. After a few failed attempts he mastered the breathing thing on day 20, which meant that I could finally hold him!!! I was so happy I thought my heart would burst. I still tear up thinking about that moment he was placed into my arms. 

 

The first photo of me and my boy.
 
He spent 3 weeks exactly in PICU before he was transferred to the high dependency unit (HDU) of the paediatric cardiology ward.    

Days 21-28

My oldest boy, Omar, only just 2 himself, finally got to meet Zaki when he was transferred to HDU. During the whole time Zaki was in hospital Omar stayed with my parents while my husband and I stayed in a house on hospital grounds for families of sick children. The Sick Children’s Trust relies on charitable donations to run the houses and it was a godsend. I missed Omar so so so much and felt unbelievably guilty for leaving him but leaving Zaki wasn’t an option. 

Omar meeting Zaki for the first time.
   

After one week on the cardiology ward Zaki was transferred to our local hospital to be weaned off morphine and oxygen and establish feeding. 

  

The ambulance journey from Leeds.
 

 Days 29 – 42
  

I had been expressing milk since Zaki was born but my neglected and stressed-out body couldn’t make enough by week 5, so he was having formula top-ups. Because he was sedated for so long Zaki had lost his sucking reflex though, so he was being tube fed. There was talk of Zaki being discharged with oxygen canisters and his feeding tube still in situ but in the end he needed none of that. He started to take his feeds from a bottle, ditched the oxygen and exactly 6 weeks after he was born, on day 42, we went home. 

  

It wasn’t all plain sailing once we got home. Zaki was prescribed (what seemed like) all the medicine in the world. It took me an age to prepare and administer it three times a day. He also had an undiagnosed cow’s milk protein allergy and vomited every single one of his feeds. Omar was confused and annoyed about being left for so long and I bore the brunt of it. Plus I was constantly (and I mean constantly) checking that Zaki was breathing and not blue. 

My boys.

Things have settled down a lot now. Omar loves me again and Zaki only takes two medicines a day. He’s also on hypoallergenic formula and gaining weight well. He had an appointment with his cardiologist this week, who was very pleased with his heart function and how he presented. 

Neither Omar nor Zaki will remember those 6 weeks of hell when they’re older, thank goodness, but I can honestly say I’ll never be over it. Sometimes I look back and wonder how I got through the days. I think about the other children that were in PICU over the weeks. The boy that was brain damaged during his surgery, the baby that didn’t make it after her surgery, the 11 year old girl that had such a rare type of cancer nothing was known about it and her mother’s wails as she died. 

Me and my baby were lucky. I’ll never stop counting my blessings and I’ll never ever stop championing the NHS for saving my baby’s life. 

  
  

Little Hearts Big Love
Mami 2 Five

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A Bit Of Everything

Kid Constipation

*Warning: this post contains poo talk and general rankness*

I know I’ve been AWOL for a while and as per my previous post, the reason was my poorly 2 year old. Well, we got the the bottom of the issue (literally the bottom) and he seems to be almost back to his usual self. 

He had been vomiting every day, starting  around 2-3am, for a week and he’d had diarrhoea as well. So in the early hours of Wednesday morning I decided to take him to a&e because he appeared to be dehydrated and was refusing liquids. And quite frankly I couldn’t handle the prospect of further nights of hardly any sleep. 

It wasn’t the first time he’d gone through a longish period of diarrhoea and vomiting either. The previous times our GP had said it was virus and I’d just assumed he’d picked up a bug at nursery. But after the third episode I thought it must be something more than just a bug. 

Sleeping in the pretty grim looking children’s ward room

From a&e he was admitted to the children’s ward to be rehydrated and so a few tests could be done to figure out what was going on. Long story short – he was so impacted with poo that the new foods he was eating had no room to digest in his already full gut, so they were coming back up. Lovely. Constipation had been an ongoing problem but because of the diarrhoea I’d assumed he was clear. Not the case. The diarrhoea was food squeezing around the mass of stuck poo, in a desperate bid to escape the overcrowded gut of my son. 

As I said, constipation had been an ongoing issue. My second child was born with a congenital heart defect, very nearly died, and was in hospital for 6 weeks after he was born. During that time I stayed in hospital with him, for the most part in a hospital a few hours away from where we live. My eldest had just turned 2 and he stayed with my parents, and although he was well looked after, he was unsettled. It was the first time he’d been away from me for more than a few nights at a time and I was only seeing him once or twice a week when he visited the hospital. It was during those awful weeks that the constipation took hold. 

What causes constipation in children?

I had no idea constipation in children was so common until I took my boy to a clinic and it was rammed full of bunged up kids. The paediatric specialist explained that it is really common and there are several causes for constipation in a child; it’s not always as simple as just putting it down to diet. 

Illness – a period of illness, just a simple cold or tummy bug, can cause constipation.

Habit – if a child passes a painful stool once they might be fearful of going again and try to hold their poo in. Leading to harder stools and a vicious cycle. 

Diet – obviously if a child isn’t eating much fibre it can cause them to be constipated. 

Historic – some babies are born with bowel issues and might be constipated from birth. 

So how can it be dealt with? Initially I tried all the usual remedies; apple juice, prune juice, lactulose, etc. When they didn’t work my GP prescribed Movicol (a powder that is dissolved in water) but that still didn’t work. What was required was a disimpaction regime, which was started off at the hospital. The backlog (log! Haha!) had to be cleared out so the number of sachets of Movicol I gave my boy was doubled every day until he had the worst diarrhoea anyone in the history of the universe has ever had. I’m talking a tsunami of brown water from the bog of eternal stench exploding from his backside. In fact it was worse than that, I don’t even have the words.  

 

The universal chart of poo. Aim for a 5!
 
Once the stuff coming out was brown water with bits in I knew he was cleared out and we could reduce the Movicol to a maintenance dose. I’d been given a handy poo chart so I knew what consistency of poo I needed to aim for. (Seriously, I can’t believe the words I’m typing sometimes.)

When a kid has been constipated their colon becomes enlarged (doctors call it megacolon but that makes me snigger!) so Movicol is required, sometimes for years, to help retrain the gut and get it back into shape.

Although the doctors were generally great, no one really told me what to expect with the disimpaction regime or how I would know the poo mass had been cleared out but I found this great website, which has a lot of info: The Children’s Continence Charity. I’d recommend checking it out of you’re ever faced with a poo query. 

Or you could always ask me. I’m pretty read up on kid constipation now. Can’t say it was ever something I intended to master but such is a mum’s life!

My Baby Looks Like Tim Off Corrie (and I only have myself to blame)

My baby looks like Tim off Corrie and I only have myself to blame. (And not because Tim off Corrie is the dad.)

   
 You may not totally see it in these photos but I can assure you that at times, my 4 month old baby boy is the spit of Tim off Corrie. Or Tim Metcalfe, as he probably prefers to be known (because it’s his real name.)

And I know why this has happened. It’s because I was mean. While I was pregnant I was mean about another baby. I giggled to my sister that a baby looked like Tim off Corrie and I provided her with screenshot evidence to prove it. That baby did indeed look like Tim off Corrie but as karma dictates, now too, so does my baby. 

But it’s ok. I still think my baby is cute so all it really means is that I now regard Tim off Corrie as cute. (Mothers are wired so that we find our own children the cutest little beings on earth aren’t we? Probably a throw back to cave men times so we don’t reject them or something.) 

My baby may or may not be a cutie but who cares? To me he’s a scrumptious little Tim off Corrie.

Anyway, moral of the story: don’t be mean about babies or you’ll get a Tim off Corrie one. (Which actually is no bad thing.)

He doesn’t always look like Tim off Corrie, see?

When Silence Isn’t Golden

My son is two and a half years old and he doesn’t talk. He doesn’t say mummy, he doesn’t say daddy. He never has. At the moment the only thing he does say is “oh no”.

As a baby he babbled away, giggled and cooed when I expected him to; there was no sign that he would be late talking or that anything was wrong.


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With each day that goes by without him saying anything I get that little bit more worried and that little bit more sad. I’m desperate to have little chats with him; to hear about what he did at nursery; to listen to the nonsense that 2 years olds come out with. I feel like we’re missing out on so much. And I feel guilty. Did I do something wrong? Did I not chat to him enough? Did I chat too much so that he couldn’t get a word in?

Last night I dreamt that he was singing along to ‘heads, shoulders, knees and toes’ whilst doing the actions and I was so so happy in that dream.

Until about 4 months ago I didn’t worry at all. He was so good at other things I just thought he was a late talker and he’d soon be chatting away. But when his 27 month check up came around with the health visitor he was extremely behind when it came to speech and language. That included understanding. He didn’t understand simple instructions. He understands more now (get your shoes, get your cup, etc.) but he’s still very behind. And my fear is that he won’t catch up; that he won’t ever talk normally.

I’m a natural born worrier and when I’m faced with something I don’t know much about I read and I research. Inevitably that means a lot of Internet research, which isn’t always a good thing. So far I’ve convinced myself that my boy has several different disorders (speech apraxia, autism, even brain damage) and occasionally convinced myself that actually he is fine and any day now I’ll hear that word I’m so desperate to hear; mama.

We have a speech therapist involved and my son goes to a really good Montisorri nursery 3 afternoons a week and they’re really trying to help him along too. We follow all the advice given; my sister bought him lots of different flash cards; my brother tries to encourage speech through play with his favourite toys; but so far nothing. And it’s really hard to keep up the enthusiasm when you’re faced with a wall of silence.

My family and some close friends know how much the issue is affecting me as a mum. And I end up explaining it to other people too, for example when a friendly old lady in a shop tries to talk to him. “Sorry, he’s not being rude, it’s just that he doesn’t talk yet, he’s got a speech therapist, I’m sure it won’t be long now, he says ‘oh no’…”. I end up with verbal diarrhoea to compensate for my boy’s lack of speech.

People tell me not to worry because worrying won’t change anything. Well, yes, I know that, but to get my brain to chill out about this I’d probably have to be sedated. When it comes to our kids how can we not worry?

And the biggest worry is that he won’t ever talk properly and he won’t lead a happy life. Everything will be harder for him, he won’t be “normal”. It probably sounds dramatic but I’m being honest and laying out my fears. And I know this might seem like something trivial to be fretting over to another parent whose child has a severe disability for example, and I get that, but for us right now for me this is my biggest worry.

For now I just have to keep encouraging him and keep hoping speech will come. On the one hand I’m told that the earlier the intervention the better the outcome but on the other hand no diagnosis can usually be made before a child is 3. It’s really frustrating not knowing what the problem is but the thought of him being diagnosed and labelled almost has me in tears too.

Sorry for the melancholy post, I just felt the need to share. And maybe someone might read who has some helpful advice. Although if I hear “well Einstein didn’t talk until he was four” one more time I reserve the right to climb the nearest tree and lob apples at people’s heads indiscriminately.

  

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A Bit Of Everything

The Library

  Today I had cause to go to our local library for the first time in about 2 years and it was lovely.

At first I thought it was lovely because I was alone, sans children, for only the second time in 4 months. The first time being when I went for a CT scan, an altogether less pleasant experience. But it wasn’t the lack of children that made it lovely (although that probably helped). 

Then I thought it was because of the peace and quiet. No screaming toddler having a paddy because I won’t let him eat 6 thousand starbursts in a row; no hysterical baby full of trapped wind; no demanding husband wanting to know where his shoes are. But it wasn’t that either. 

It wasn’t until I was leaving that I realised that it was the mixture of people in that place, all engrossed in their own individual activities, that had made the atmosphere so lovely. 

In the corner was an older gentleman, around mid-70’s, using one of the fairly ancient PC’s to look for package holidays. He was meticulously scribbling down the details of each one that fit his criteria and beaming as he did it. (I don’t think he knew he could print the pages for the bargain price of 5p per sheet.) Next to me was a scruffy, hippy type bloke, about 25. He was designing a poster for some sort of Christmas event and kept popping up to the counter to ask the opinions of the Middle-aged librarians, who were loving the attention and trying to out-flirt each other with him. 

Dotted about the library were all kinds of people choosing books, reading newspapers, writing, researching, immersing themselves in whatever it was they were doing. 

As I left it made me sad that my local library most likely won’t be around when my children are old enough to enjoy it. And not only that; the motley crew who were in there today won’t have that sanctuary to go to anymore. I found it almost comical that the elderly man was searching for package holidays in a library, but what if that was his only access to the internet? And what if the Scruffy Hippy relies on that place to design his flyers?

When cuts are made it’s always the most vulnerable in society that suffer but I have to be honest, the library is under-used. It was around midday and there was a maximum of 8 people in there, including me. The sweet little children’s section was totally empty. It’s no surprise that it’ll probably face the chop soon.

  

My 2 year old is already a member of the library, although he’s too boisterous to show much interest in books so far. But regardless, I’m going to start taking him to the library at least once a week to encourage him to see reading as something fun to do. It’s not much but it’s the only thing I can do right now to increase the footfall at the library and maybe help it hang around for a bit longer. 

Lately I read more blogs than books and that has to change too. As convenient as a Kindle is, I still love the feel and smell of a proper book; its high time I got stuck back into some good novels. Any recommendations?

Side Note: when I got home the husband hadn’t been able to find his shoes, the baby was hysterically crying and full of wind and the 2 year old had demolished six thousand Starburst. At least.