Living with a Baby who's ill..

It isn't easy.. Full Stop.

When I was pregnant, I imagined everything I would do with my little boy. I imagined playing football with him on Sunday mornings, I pictured his face light up a Christmas and I dreamed of him on his first day of school.

I didn't picture going back and forth hospitals miles away from our family home, watch him scream in agony as my eyes both drooped from tiredness and from sadness watching the one person you would die for be in pain. I didn't picture stand there watching him having countless cannulars in his tiny hands or tubes down his throat or watch him be sedated with morphine. I stood there and took it, inside I was screaming at the nurses to make him better, I was shouting at the doctors to find a cure and mostly I was crying with sadness and guilt. Guilt that i still carry today..

Did I do something wrong whilst i was pregnant?

Did i not take enough prenatal vitamins?

Did my own issues interfere with his development?

Why me and my family?!

But on the outside I wasn't a scared 20 year old who wanted to cuddle her parents, I was a worried and anxious mother.. who would do anything to protect her baby cub.

This is Noah's Story so far!

Saturday 31st October 2015, 4pm

 Noah has just turned 5 Months old!

Day 5/6 of non stop screaming, no breaks just pure high pitched I'm in pain scream. 24 hours a day! We put it down to teething, he was showing the signs! We tried everything to settle him but to no avail. We were all shattered and all praying that it would stop. But we got on with day to day life. We travelled to see my partners mother and even she couldn't settle him and told us it wasn't right and it needed to be seen to.. but it was Saturday so that meant Care on Call to be transferred to out of hours GP in our local hospital. When we arrived we saw a doctor and he told it was colic and to go home. My mummy intuition was telling me different and i tried telling the doctor that hes had colic before and this is different. I didn't know what was different but i knew he wasn't right. I argued and argued with that doctor! (One thing i can say is don't argue with a stressed and tired momma! She always wins)

I asked to see a pediatrician and eventually he gave in and we went to the children's ward.

Straight away they knew something was up and got right ahead to fitting a cannular, fitting his tube and taking X-Rays. I looked on, not knowing what to do and just wanting everyone to go away and let me cuddle my little guy. But i knew he was in the best place! Unfortunately my local hospital doesn't run a children's hospital at night so we had to be transferred, at first they queried 

Glangwili- 45 Mins away.. Wouldn't Take him, didn't have ultrasound available

Cardiff Children's- 1 1/2 away.. Wouldn't take him, him being underweight

Bristol Children's- 2 Hours away.. Took him in and we were shipped off.

Same Day 11pm

Sat in a unknown hospital A and E department (ON HALLOWEEN), on my own (Partner was not allowed to come due to accommodation) with severe social and normal anxiety and a screaming child who I wasn't fully comfortable looking after at the time on my own. I felt like i had to grow up there and then and actually act like an adult..With no one I knew and couldn't phone anyone. I will admit at that time I looked like a terrified 5 Year old. I didn't know what to say to the doctors, what to do. I kept pacing his bed, giving myself a pep talk. One of the nurses must of guessed as she handed me a Luke warm cup of tea and sat me down, telling me everything that was going to happen.

1st November 2am

Noah's just heading up to ultrasound still screaming (This makes it day 6), all i could do i follow behind carrying a small bag put together by my father of our belongings and holding back tears on my own. They were looking for what is known in the medical world as an Interserseption, in our words basically they were looking for his bowel that would be going in on itself and back out (Picture a telescope going in and out)

They couldn't perform the ultrasound, he wouldn't stay still long enough and was still screaming his poor heart out. They looked at me and asked if i would allow them to give him morphine.. Morphine for gods sake! He's a tiny underweight 5 Month old and they want to give him morphine!!!! I've had morphine before.. but that was after a operation! So why the hell are they suggesting it now! I know it was only a tiny amount but as i watched on holding his hand, he stopped crying, he stopped screaming, he stop wailing his arms and legs around.. he just stopped.

My poor screaming child went limp, like the life was sucked out of him. At the point that's when I felt most scared.. If something had gone wrong with the morphine, it was on me- I signed the papers. But looking back at it now, I know he needed to have that scan and i know how much pain he was in but i still feel an ounce of sadness that my smiley baby just stopped.

1st November 4am

Interserseption was ruled out and I've settled into the surgical ward (if things went downhill) The lovely nurse gave me a little tour and made sure i knew where baby milk and food was, where food for me was and everything i needed. This helped a lot! This settled my anxiety as i became used to my surroundings. Noah then ripped his cannular out, but still on cloud 9 with morphine found the funny side, me on the other hand.. Ran around like a headless chicken! A peaceful night sleep (the first in nearly a week) started a 6am and was rudely disturbed at 9am! Roll on another day in the life of Noah.

4pm

We were told that Noah couldn't go home yet but could transfer us to a Glangwili, a hospital which was closer to home, a hospital i knew (I Delivered here) and a hospital in wales with welsh signs that made me feel homely! just waiting on hospital transport!

8pm

Baby we're closer to home and it feels so dam good! I'll tell you now, a hug from your partner (after not seeing them for 24 hours and going through so many emotions without and not being able to pick up my phone) was the best feeling ever.. My anxiety melted away, i no longer felt scared and i had my partner in crime back to help me. It was bittersweet!

2nd November

Another Doctor, another consultant, Another 'Noah could have..

3rd November

Still in hospital, but luckily for me.. Noah has his daddy and i get to go home and change and bath and sleep a full 6 hours!

4th November 1pm

Consultant is hopeful he knows whats wrong, the symptoms fit and he told me he was 80-90% sure. He told me it could be Hirschsprungs Disease.. No i hadn't heard it before either! Bear with me i'm still learning what it is..

This disease is uncommon found in 1 in 5000 births and it starts from when he was in the womb. Its a problem with the bowel and ends up in surgery, and that could go two ways, 

1) Simple keyhole, remove bit of bowel done. Follow ups every so many weeks/months

2) More complex 'pull through surgery' which means pulling the bowel through the skin to the outside and he would have a colostomy bag which has to be changed frequently through the day and could live with it for the rest of his life.. or a small possibility of having a reversal when he would be older.

I'm obviously praying for the first option, not just for me and my partners sake but for Noah's!

Apparently Noah not pooping till he was 5 days old is a massive warning sign (99% of babies poo in 48 hours of birth) and also the fact he has be constipated his whole 6 months of life it a massive warning sign. But as a first time parent who went to doctors to be told it was normal- What else could i have done?!

 4th November 6pm WE WENT HOME, ALL 3 OF US!!

To not go home for days to return back is the best feeling in the world, you own surroundings, your own bath, your own food! Its heaven and I don't take it for granted anymore! We were released with information that Noah would be seen in Cardiff hospital at a later date for a biopsy, Which is a new challenge that i will deal with once it comes.

Fast forward to Today 21st December 2015 4.15am

I cant sleep! I feel inspired to tell others of Noah's story and use this space to document our journey for both friends and family and for strangers that might be going through the same thing.

Noah Day to Day

Noah everyday has what we call 'episodes'. This is when he will start screaming a high pitched scream for no apparent reason (he could be playing and suddenly it starts) it's usually if his belly's hard or if he needs a poo or when he's feeding! but all I can do in the moment is trying and calm him and settle him. With him its usually 70% pain and 30% being scared.. So i combat his fear first so then i can settle him better with painkillers and hes not kicking off. And this happens everyday without fail, I can't avoid it or ignore it! its life now and we've just got to wait and see where the future takes us!

PS I'm still bummed that i spent £10 buying him the cutest pumpkin outfit for Halloween and it went unused. Waste of bloody money! 

Even in Pain he's still my little smiler (:

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