I'm Back!

Hey! Hello! Hi! If you hadn't of noticed.. I took a bit of a hiatus.. Life got hectic!

You know the feeling when you blink and suddenly life is passing you by at 100mph? I got this feeling ever since Noah's first birthday. Our weeks have been filled with appointments on top of appointments. Plus my health isn't great and to be honest.. I haven't been feeling in the mood to type my inner most thoughts out. 

So let's go back a few weeks and I'll fill you in. Grab a cuppa and a biscuit this is going to be a long one!

So the last type I wrote was 31st May! Wow.. It's been too long! So since then:

• Noah's Birthday
• Noah's Party
• Noah's Biopsy
• Noah's Dietitian Appointment.
• Noah's New Milestones!!
• Trouble with my own health.
• Noah's Has his own social media, Kind of..

Noah's Birthday was a great success! He loved it. Loved every present and everyone who came around to see him. He spent the day smiling playing with all of his presents, while I sat in the corner crying that my teeny 7lb baby was crawling around the living room demanding everyone around. 

Yes that is a life sized Olaf!..

Loves his trike!

His Party went just as well as the actual big day and he loved every second of it! He had so many friends to play with and I had gone to town with the party food! We were still eating it days later! Plus the center piece of this whole day was his gorgeous Curious George inspired Cake! He loves Curious George so we thought we would give him what we loved. It was made from a local baker and I think she did a wonderful Job!! Or am I biased to say that?!

Noah's biopsy was a complete mess! We had to ring the morning we were supposed to be travelling up (The 29th of June, The biopsy was scheduled for 30th June). We were going up a day before as they wanted us there at 7am on the 30th and we live over 2 hours away! So we rang up at 6am when they requested, to be told they wasn't sure if they had a bed for Noah?! Excuse me, what?
My poor baby had waited 9 months for this day, to be told that he could possibly have to wait even longer! We were told to ring back up at 10am, so we waited and rang again to be told to ring back again later at 3pm! So again we waited and began losing faith that a bed would pop up for Noah!

3pm finally rolled around and a bed was available. We dropped everything and left. Bags had been packed days ago, a hotel was booked for me and my father, everything was ready to go. We got there and Noah got settled in. 

Fast forward the next day and I was in a hotel down the road about 10 minutes drive away. I had a phone call from Chris at 8am to be told to hurry down as they were going to bring him in. I had just woken up and I rushed to get ready to go, begging Chris to get the surgeon to delay so that I could be there when my baby was put to sleep. Then Nightmare hit! Rush Hour in a busy bustling City!! Why me?! I rushed to the hospital and literally ran from the car to the ward, across the hospital and up 2 flights of stairs. I looked like a crazy person with my hair messily threw up and clothes thrown together, running through the hospital, apologizing to everyone I ran past. I made it to the surgery Ward and buzzed in. This hospital has doors that you have to wait to be buzzed in and out of. Basically this ward's receptionist decided to take a tea break just as I got there and I ended up buzzing loads and banging on the door, nearly in tears and gasping for air! Some poor doctor let me in and after thanking him between breaths, I ran the rest of the ward to Noah. Why they designed the ward to have 3 separate hallways and Noah's bed happened to be the furthest away bed away, I will never know! I finally made it 5 minutes before Noah was due to go down. Just as I got there I nearly collapsed.. I am not the fittest person and considering I had only woke up 15 minutes prior and just ran a half marathon from the car to his bed. I saw that Noah was happily smiling in his bed, confused I looked at Chris, In which he replied that Noah had been moved from that slot to later in the morning. I nearly had a bitch fit! I just raced here for nothing! Bad mood started here. 

I went to find nurses to ask what slot he had be moved to, I found the nurse who was looking after Noah and she was a grumpy, ignorant woman. I was a worried mother who wanted information about her poorly baby and she couldn't care less. She grunted at me and snapped that she didn't know. I understand that they don't always know but she didn't have to be an ignorant person. Turns out she did know as she began discussing it with a colleague as I was walking away and still in listening distance.

On to the biopsy itself, we were taken upstairs to theater, Inside I was screaming to not hurt my baby and wishing that I could swap positions with him. I kept reminding myself that this is what he needed to get better! It didn't make it any easier. They then told us that only one person could go in whilst he was being put to sleep. I offered, even though I knew it would kill me, I needed to be there for him. Call it being a mother but I knew I needed to see him in. 

THAT WAS THE HARDEST THING I'VE EVER HAD TO DO IN MY 20 YEARS OF EXSISTENCE.

He had a mask put on and he was kicking and screaming, whilst I was holding him tight to my chest. He kept looking up at me with his sad eyes and he was so distressed. He pulled so hard on my necklace that a pendant snapped off. I wish I could of taken away the fear away from him but all I could do was just hold him and keep telling him it was okay and Mummy and Daddy loved him.

He then just dropped.

He went floppy. His head dropped and his legs flopped. The only thing that didn't was his hand that was still clutched onto my necklace. I prized it from my necklace and placed him on the bed that was waiting for him. I gave him a kiss and rushed out the door. I couldn't stay in there. I couldn't look at him. A nurse rushed out after me and brought me into a strong hug. The type of reassuring hug, she whispered to me that I was so strong and she was so proud that such a young mum was so strong.

That's when it hit.

I broke, cracked, snapped. My knees went weak and the tears came out my eyes so fast. Chris heard me and ran straight to me, he brought me into a hug. The nurse was rubbing my back and I was sobbing into Chris' chest. I never want to do that again. The nurse rushed to get me a tissue and after the lake of tears I had just produced, I put myself together and made my way out of the ward and downstairs outside to have a cigarette!

I feel sorry to the people who had to witness me going downstairs! My eyes were bright red, my face was blotchy and I was a sniffling mess.

After we grabbed lunch and headed back upstairs. I had previously made my wishes clear that I wanted to be told as soon as Noah was in recovery so we could be there when he wakes up. He would be in a strange place, with people he has never met before and in agony. So when we went back to the ward to wait for him and we went straight to the nurses station to ask if there was any news. No news, we went to the ward to eat and talk to the other parents who was in the bay with us. They were lovely and had been superstars to us, offering drinks and advice and general a person to chat to who knew what we were going through. One family even gave Chris their pushchair to get Noah off to sleep the night before as he as in a strange place and didn't want to sleep!  
About an hour later we were still chatting when we heard a massive cry from a baby. I looked at Chris, and told him that was Noah. He replied that they would phone us! I looked at him and snapped that it was Noah and I knew his cry a mile off!

I ran out to the corridor and lets just say Momma knows best. That was my baby cubs cry! He was inconsolable! He was screaming and kicking off big time! I ran and grabbed him off the nurse.

I WAS FURIOUS!

One lesson.. Do not piss off a Mama who is full of worry and stress, you will get a mouthful!

It took 2 hours to settle Noah. He spent the time screaming his little head off! He was terrified and in agony and he just wouldn't settle. If we was there when he was in recovery, before he woke up this would not have happened! He would be calmer and not be in so much of a mess. 

The surgeon came to see us after a few hours and explained that he only took a biopsy and not done more, like they had told us on the phone a week earlier and when I questioned him about it, he replied that they didn't have a probe small enough to go further. What stupid Children's hospital that also deals with preemie babies do not have a stupid small enough probe! He then explained that we would have to wait 6-8 weeks just for a letter for an appointment that could take a further 6 weeks! So basically we would have to wait 12 weeks just to find out if my son is dying! 

Nobody is taking this seriously! He can die! He can be seriously ill! What if his bowel explodes and it kills him! What if he needs a permanent colostomy bag instead of a temporary one for a few years, that could of been sorted and not been as serious.. 

So that's where we are 4 weeks later. A woman who lives just down the road from us has been through the same procedure and her son only has to wait 3 weeks for results and surgery, so why is Noah being singled out against other Children in the same area, with the same symptoms!

Trust me.. I will be on the Phone this week, demanding answers and I will not give up until this is sorted!

Moving on, Noah had a dietitian appointment on the 19th of July, he was weighed and he now weighs 20lbs which is between the 9th and 25th percentile, which basically he has stayed between since he was a few months old.
She is happy with what we are doing and we are still following an unlimited diet, given to us by a consultant a few months before. Which basically means, give him anything and everything as long as he eats it. This could be chocolate or Turkey dinosaurs as long as he is eating. We are supplementing him with liquid vitamins which contain everything he needs, such as calcium, Iron, minerals and all vitamins. There is also a plan in place that if his weight drops from that percentile or he starts losing weight - which is a liquid diet of fortified Milkshakes which has everything he needs in. We don't particularly want him to go down that path as he would be going backwards and missing out on solids completely.  But a plan is in place that I would ring his dietitian as soon as it happens and sample milkshakes would be sent to us to see which flavours Noah likes, we then decide and then a package will show up with 4 months worth of shakes, to be given 4 times a day. So at least worse case scenario is covered.

Taken from: http://www.nutricia.co.uk/products/view/paediatric/fortini_smoothie_multi_fibre

Fortini Smoothie Multi Fibre is a Food for Special Medical Purposes for use under medical supervision. Fortini Smoothie Multi Fibre is a nutritionally complete 1.5 kcal/ml ready to drink fruit smoothie style sip feed, with added fibre, for the dietary management of disease related malnutrition in children from one year of age (>8kg in body weight). It is enriched with 1.4g/100ml Multi Fibre, providing 70% soluble and 30% insoluble fibre. Fortini Smoothie Multi Fibre can be used to supplement the diet of children who are unable to meet their nutritional requirements from other foods, or it is suitable as a sole source of nutrition for children aged 1-6 years or 8-20 kg in body weight
For Gastrointestinal problems. 

Noah's Milestones have come from nowhere! He is suddenly trying to hold a conversion, getting ferociously independent and is becoming a toddler more and more everyday! He can say 20+ words, is cruising around furniture and recognizing places and things when we are out and about. He is even taking a few steps here and there but not fully walking yet! He is also so caring and bubbly! He always gives you a kiss when he wakes up and goes to sleep and is always smiling. He waves at everyone and tries to butt in on conversations so he is part  of it. It's like I've blinked and he's gone from a tiny baby to a toddler!

Next onto Mama! It hasn't been plain sailing for me either. I have decided to not share this until now but writing is my therapy and I needed to get out there how I am feeling. 

Before Noah went into hospital I went to my doctor complaining about my downstairs area. I'm not going into detail as my parents read this. Hi Mum, Hi Dad! But I am in a lot of pain and it is hard going to the toilet! I was sent for swabs to be taken, I was even on a bed having swabs taken 2 hours before we left to take Noah to hospital! I then went back a week later to have more taken!
The took swabs to test for Cervical Cancer also known as a Smear Test! Which 1) I had 3 injections at 14 to prevent, so I would be pretty annoyed if it came back as I had it, as I only had the jabs 6 years ago! and 2) It's not usually offered to women under 25! Which is ridiculous as Cancer can strike anytime, It doesn't just decided to attack you after you turn 25! 
I was also tested for chlamydia. Which by the way, I was fairly confident I didn't have it! I'm not the sleep around type..
I was tested for 4 types of infections at different areas. Altogether they took 8 swabs! 

They all came back negative and I went back to my doctor who gave me gastrointestinal painkillers which made me feel super sick, so now I've been put onto strong painkillers that make me just want to sleep! My doctor also wrote a letter to a gynecologist so they can test me further, which includes a ultrasound and CT scan and possibly a MRI scan, along side a blood test and urine test. They will be looking for 2 main things: Cysts, which is now apparent that it does run in the females in my family! About 7 women in my family have had them removed so its not something new in my family and the other they are looking for is Ovarian Cancer which is not common in my family and is definitely not common in women my age! I'm nervous for the further tests and the outcome, but it's a bridge I will cross when I get to it. I just wish it wasn't right at the same time as Noah's condition. It's hard enough dealing with one sick person let alone 2! Overall I am nervous for the future for all of us!

Lastly, I want to end on a happier note!

Noah has his own Facebook page! Many of my friends and family wanted us to make a Facebook page with all of his updates! I also update there (alongside my own personal Facebook) more frequently than my Instagram and Twitter and here!

You can find us there at: Noah's Journey (I've even made it easier for you so you can click this link and it will take you to the page, in a new tab). While you're there, drop a little like, so you can keep updated on his journey. 

Look at my little guy! I adore his smile, It always warms my heart <3

Now I am back my from a little break, I will be posting more frequently, so look out for more updates!

Until Next time..