I need answers and I need them quickly..

Noah's Cardiff Appointment- Went and I'm just as clueless!

Monday 18th April, 11am. Food chart has been filled out, toilet chart has been filled out, A urine specimen has been collected and paperwork filled out and we are ready to go!

2pm: We get to Cardiff Children's Hospital, 2 Hours away from where we live. Within 10 minutes Noah has been weighed and has his height taken. He still weighs 18lbs 2oz.. He hasn't gained anything in 4 weeks! Nothing, not even an ounce. It's a bit soul crushing. It's hard to take in. Ultimately it's a knock in the teeth. We've seen him slowly decline this last month, to the point- He cannot poo on his own! He has to be physically helped and it ends up with lots of blood and tears! On the plus side, he is now 2ft 4 inches tall! He will be my little 6footer when he's older!

We head back to the waiting room and within minutes his name has appeared on the screen for us to see his consultant. I will give it to this hospital they are quick!

2.30pm: We haven't been here long and already we are being seen by his consultant/surgeon! We gather into this room and we talk about how this has been happening since birth and he was annoyed that it hasn't be brought to his attention sooner. Not our fault! But at the fact he is nearly 1 years old and only now just being seen!
 
He then gets on to feeling his tummy. He placed his hands down and straight away he can feel a blockage. Confirming there is something wrong. I've had this worrying feeling these past few months that I had been over worrying over nothing and it was all in my head. But knowing the surgeon could feel a blockage put me at ease. It made me feel better knowing that I wasn't a nervous, over cautious First Time mother. 

He then filled in a form and told us that Noah would definitely need a rectal biopsy. Just not today, or this week, or month.  It was a non urgent case! That made me sad, that my tiny baby/toddler was in agony everyday, could barely eat or gain weight, but not a priority. But alas, all prep I had spent weeks on, went unnoticed. He refused to see the charts, and photos and we were ushered out. 2 Sodding hours drive to see his man for 5 minutes!!

But we made our way over to another department, where we filled in forms for Noah to have this biopsy. Answering questions like:

Does your child drink?
Does your child do drugs?
Does your child understand the procedure?

How the hell was I meant to answer these questions?! Of course he doesn't understand! He doesn't even understand words yet!

We filled the forms as best we could and was told a letter would be with us for an appointment in 8-12 weeks! then a further few weeks for the biopsy and a few more weeks for a new letter for a follow up, Then a few more weeks for the appointment and then the same if he needed surgery! So basically he would sort this out when Noah was what 3, or 18?!

After an hour of being at the hospital, we made our way home! Just as confused and full of questions as we started. Th only benefit we could take from this is that he would have a biopsy, some time. Now we wait in the waiting list, as another name on paper.

Until Next time..

Comments

Post a Comment

What Are other people reading?

Living with a Baby who's ill..

Image
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...
Keep reading

Life through an Angel Mama's Eyes | Guest Harleyinmyheart's personal experience.

Pregnancy loss happens to 1 in every 4 people, this is a shockingly large number for such a taboo subject. We will end the stigma around pregnancy loss. I have my own personal experience with this. I have lost two babies both before the 12 week mark and it does not get any easier. Although myself and plenty of other women are open about it some are still fearing that it is not an easy subject to discuss. At the time of need a woman shouldn't hide away but should get support from a fellow mother and friend.  Our guest today comes from an Instagram page who lives everyday helping women who have been in this position. She works hard to break the stigma, whilst letting the memory of her son Harley live on.  Harleyinmyheart  also known as Miranda shares her personal experience. 'I was 17 when I got pregnant. I had all the symptoms and I decided to take a test on November 6, 2013. I went to take the test at school between classes. My school had this policy that...
Keep reading

You know what.. I'm not okay!

You may have noticed most of my social media I've been quiet, I've stopped posting . I just left!  Usually with this blog I have no motivation to post but I still keep up my social media. This time I just have no words to write, no pictures to share.  At the moment I'm just a shell of a person gliding through life. I still get up and be a mum. I still do what is required of me. But I'm just a walking, talking robot.  Nobody knows why, I don't talk about. I don't want to think about it but it's happening. Something happened in my past that's coming back to haunt me and to be honest I am so scared to be here right now. I scared to leave my house on my own and I'm scared of just thinking. I don't feel safe and I don't feel secure. I don't feel me.. On the outside I'm ok, I paint this picture for my friends and family. I paint such a wonderful picture that I'm doing well and I'm super mum and an amazing best f...
Keep reading

Noah's 2 Year Update | How is my baby 2 already?!

Image
2 Years! Wow have they flown by?! Noah turned 2 on the 14th June. I still cannot fathom it! It felt like 2 minutes ago we were celebrating his birth and now I have a walking talking human that I have created and kept alive for 2 Years! I struggle to keep fish alive this long, but this parenting thing.. I've got down! So what's new? He is still very ill, and we still don't have any ideas! He was put on a dairy free diet a few days after Xmas, we tried this for 6 months with no change. He is still dependent on medication and as he gets older the worse he is getting! He now takes so much medication he could rival an old man!  We discovered he had eczema at 6 months old and that too is getting worse with age. It started with a small patch on his back and now it has spread to his neck, his armpits, the creases in his arms by his elbows, the backs of his legs and all over his thighs and calf's. With a small patch on his belly. This has been just as bad to mai...
Keep reading

Meet Emily.

Image
My Light, My angel, My beautiful daughter.. Emily this week is now 3 Months old and is she is growing so quick. Learning things before I thought was possible and she has the most beautiful smile, that will make a whole room smile back. So what's been happening? She is rolling over, Although my health visitor told me it was impossible before 4 months, she first did it at 8 weeks which was probably a coincidence but has been actively rolling over since 10 weeks old. She currently does belly to back but when she is on her back she will go onto her side as if she was to roll. So rolling both ways is in the near future. I don't have a current up to date weight until this coming Tuesday, as she gets her 3 Months Jabs. But she was last weight at 10 weeks at 10lbs 2oz. So that's a 4lbs weight gain in 10 weeks! Emily is on the 9th Percentile where she has stayed since birth so that's great! She is in size 1 nappies and in Newborn clothes and has 4oz every 4 ho...
Keep reading

What Noah got for Christmas 2015..

Image
First things first..  I started buying for Noah in October! We had a little family holiday to Stoke On Trent to see friends- so we took the opportunity to buy. They had stores such as Smyths.. Which we living in the back of beyond don't have. But what do you buy a 6 month old for Christmas? They wont remember it, and the best part of the day for him would be playing with the wrapping paper.. So I went practical and got him what he need, and a few toys. Noah had more presents than the picture shown but this is what me and Chris bought him.  Before.. .. After This took forever to unwrap with him as he only wanted to tear a little piece at a time! But after 2 hours and a nice Christmas dinner he managed to actually enjoy his presents. So what did we get him? Pictures will be placed below! *Mainly clothes sized 6-9 (although he still fits in 3-6) he has now got clothes to last him until March! This includes: Long sleeve...
Keep reading

Nearly 7 Months old.. Whaaat?!

My Tiny Newborn isn't so tiny anymore.. 14th January 2016, Noah will officially turn 7 months old. This is how he's doing and a little life update. *Noah has officially joined the Weaning Team and has 1 meal a day, soon to be 2! He usually has a small jar of baby food, We are liking Hipp Oraganic and Heniz at the moment and he tried Mango Chicken Curry and Lancashire Hotpot this week!- My baby is eating better than I am. He took to weaning amazingly and loves his food! Another firm fav is full on Sunday dinner.. For those that are not aware.. Its potatoes, Meat (usually chicken), Stuffing, Yorkshire puddings, veg and gravy. He munched through his Christmas dinner. *Noah is balancing between size 3+ and 4 Nappies. We use Pampers Baby Dry nappies, which are usually on a 2 for £14 deal. Who doesn't love a deal. Wet Wipes he has Johnson's Sensitive Skin, which we buy in bulk 12 packs at £7/8. These haven't made his come out in a rash and uncomfortable, so we'v...
Keep reading

Things happen for a reason..

Look for the positives! So not many people knew this, both in my family/close friends and my internet friends but- On the 28th February, Me and Chris found out we would be expecting another baby. Shock was an understatement! We weren't trying or planning and we were being safe.. If you get what I mean.  Anyway my periods had really been messed up after having Noah, I only had 3 in the space of 8 months, so I didn't even know if i was late. The reason we became suspicious was the fact I couldn't eat for a month. I dropped nearly 2 stone and became really weak and tired. I had put it down to catching the flu but it just didn't seem to pass! So with my next Tesco delivery, I ordered a pregnancy test and the day after it came. I did my business and by the time I had finished in the toilet: The result was pretty clear. I started shaking and breaking down! Couldn't understand what was happening. How could I cope with 2 under 2. I nervously brought the test...
Keep reading

The most exciting post!

Well, IM PREGNANT! I know most of everyone who reads this already knows! But as of writing this blog post I am 15 Weeks!  So let's back track and I'll go from the beginning.. 16th August  We got the keys to our new house! We were over the moon and in full swing of moving. We spent more than I like to remember, we spent many hours packing and reminiscing about the time we lived with my father and how we would miss our little simplicities. We were content and excited. 20th August 2 days until we officially move in and become adults. I am now officially 2 weeks late and with the hustle and bustle of moving I hadn't realised. I had an app that would track my next period, as I'm super prepared and always have stuff in. So when I was flicking through my apps I had noticed that I was late. After having Noah my periods were all over the place and we were tracking to see when they went back to normal. FYI.. they still haven't (: I went out shopping that day to b...
Keep reading

It's Your Child!

Everyone is entitled to their own opinion.. But should it really be said? I read a post on this subject a few weeks back, and it really hit home. When you have a child, everyone feels the need to input their opinion and their life experiences. My friends, My family and  even people I don't even know. It's getting to the point, I would happily bitch slap anyone who voices their own opinion about how to raise my child. My child.. Noah. I have been with him 24 hours a day, 7 days a week. I know my child, inside and out. His likes and dislikes. His favourite food, teddy and position he is most comfy in. But it doesn't stop people reacting and telling me it should be done a different way.  People in the street, who don't even know Noah or me or my family- Feels its right to tell me i am doing something wrong or it should be done another way. Here are a few examples: *Letting Noah sleep on his belly! People complain and insist it's going to kill h...
Keep reading