Follow ups and fun

When I woke up on Monday morning I wasn’t sure about what the day was going to hold. For the last few weeks I had been nervous and worrying about what was going to happen because E had her follow up appointment with her surgeon.
This was the first appointment I was going to have with him since she had the Surgery in June to correct her Vesicoureteral reflux.
This is because the first appointment we were sent for 6-8 weeks after was canceled because it was in the wrong hospital (we didn’t find this out until we turned up to said appointment at the wrong hospital. I was fuming!).
We were told to wait for another appointment, which would be sent out to us. So we waited and nothing came for a while. So I brought the issue up with her Consultant Doctor when we went for her check up on her duplex kidney. Within a week I had an appointment thought the post and finally I was going to be told how everything went. (Over 6 months later)
We would also finally be able to find out if E could come off of her daily dose of antibiotic, that she take to help prevent UTI (urine track infection).

We arrived at the hospital early, like we normally do. That way they nurses can do the measuring, weight and blood pressure beforehand and I have time for E to give them a water sample. (This is the normal routine at appointments, so E knows the drill)

E has become a bit of a pro at all this, although she doesn’t like the weighing scales. (I don’t blame her I don’t like them either but for a different reason)
She sat really good and shows a maturity that was far older then the normal 3 year old. Even the nurses commented on how well behaved she was and how great she sat. Where as most of other children had the normal reaction of being scared and crying when it came to noise and squeeze of the blood pressure machine. E just sat and watched it.
I put this completely down to her obsession with Disney’s Doc Mcstuffin. I may have made the program seems really exciting when she was a baby because I knew she would love it as she grew up and it would help keep her calm with her assortment of hospital appointments in future.

After all her checks, we waited to be called in to see the doctor. E ran off to go play as I basked in the proud glow of my amazing little miss.

A short wait later and we were called in. E walked in the room and head straight for the toys as Baby and I sat and talked to the doctor.
I was scared about what he was going to say but I answer all his question about her health and if she has had any more UTI recurrences. When I explained that it had all been fine. He seemed please and scribbled down notes before checking her ultra sound scan results.
The wait was intense and what felt like forever was probably less then a few seconds. But he turned to me and said all was well her scan looked great and the surgery has been a success as far as he could see.
This meant she could come off her medicine and he didn’t want to see her again for another year. 😄 he did arrange for her to need have a scan between now and then which isn’t anything to worry about they just need to keep an eye on her to make sure things don’t change as she grows, plus the scan will help her Consultant Doctor check that her duplex kidney is working properly too.
So even though the appointment went well we still have loads of appointments in the future but the time period between them is getting longer. Which makes fitting Baby’s hospital appointments and groups in easier too.

I left the room beaming and we got ready to set off home. E asked if we could walk into town, so she could jump in puddles and stop at Gregg’s for a sausage roll before we got the bus home. (I know easily pleased)
At such a fun request and given how well she had behaved I couldn’t refuse.
So even though the wind was blowing wildly and it was pouring it down, we wandered off to jump in puddles and have some fun.

It was made even more fun when the rain stopped and we arrived at the water feature in that sits in Bradford City Centre. She really enjoyed jumping and running through the water. (It was a good job I had put her in her wellies and waterproof all in one suit, under her coat)

After all the fun we walked up to the bus station and got some lunch, so we went to Gregg’s. She got her requested sausage roll and I brought a pasta for the girls to share and a sandwich meal deal for me.

It was the prefect end to the day and I was left feeling utter pride and amazement at the beautiful daughter of mine. She just takes everything in her stride and doesn’t let if stop her having fun.

Nikki x

let kids be kids

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Difficulties in life

Day 27: Have you had to overcome something difficult?

This prompt had me thinking about the all the things I have found difficult in my life and that I had overcome or just learnt to deal with them.

Growing up I found a lot difficult because I was teased, tormented and bullied throughout my childhood. Primary school was horrible because all my bullies lived in my area. Which meant I couldn’t escape them. I barely went out because if I did I would be followed and teased. They would throw stones and mud at me, at my house and I didn’t help matters by getting angry and screaming, shouting or rising to their bullying.

When I went to upper school I thought it would be a fresh start and a new me.
Unfortunately I ended up going to same school as my bullies and was even put in the same form class as most of them. Upper school was rough until I reach 14. By which point I had made a group of friends and I started going out away from my area. I would go iced skating on a weekend where I made even more friends.

Just before I went 15 I started hanging out with and older group of people and going out to the pub and night clubs. (I would lied to my parents saying I was sleeping at friends or my sisters and would lied about my age to get in)
I know now it wasn’t the cleverest thing to do but back then just knowing I had somewhere I could go to be me, have fun and meet new people really helped my confidence. (it also helped 15 year old me survive my school days. It was the fact of knowing I had been out clubbing all weekend while my bullies where drinking cider on cold park benches because they couldn’t get in to clubs and I could. Petty I know but I was 15)
After high school things looked up. Obliviously I didn’t do very well in my exams due to partying nearly every weekend and not revising or working in class due to bullies.

I got in at a local college doing art and finally managed to get away from my bullies. I was happy for a while. Until I ended up meeting T’s dad and fell pregnant at 16 and very early into relationship. He was only 17 at time and we had a very volatile relationship (not all his fault). We weren’t good for each other but stayed together throughout the pregnancy and afterwards. After birth I was suffering from postnatal depression and didn’t really want to be with him or him me but we stayed together for T and because I was petrified of being a single teenage mother. Mainly due to the stigma that is attached to being a single teenage mum, I already had people commenting on bus or giving me stares when I was shopping.
Eventually we called it a day when T was 18months old and I was left alone, broken and with a baby to look after.

I hit an all time low. Fortunately I had a great friend who dragged me out of my depression and helped me learn to love myself, my life and figure out what I really wanted. (read about it here)

After that life still had some difficult times like when I fell pregnant with P at age of 20, while I was still a single mum and I had to go through the pregnancy, birth and raising 2 children on my own.

But when P was 4 months old a friends of mine asked me to go to a college open day with her and we both signed up to redo our GCSE’s.
It was that day that my life started to turn around. I was finally doing something for me to better myself and I loved it.

From then on my confidence grew and I realised I learning was fun and how much I had missed out on in school. Plus 5 months down the line I met the love of my life (my hubby). We have had our ups and down like any normal couple but he has made me the happiest I have ever been. With his help and support I finished college 3 years later with 5C grade or above GCSE’s, 2Alevels and 3Aslevels. I also left college heavily pregnant with our first daughter (not that we knew she was a girl at time).

After that I spent my time being a mum and I planned to look for a job when E was a bit older. She had other ideas though because when she was 3 months old she was rushed into hospital with a high temperature which was caused by a water infection. It was after that she was sent for test and found to have vesicoureteral reflux and duplex kidney. (you can read about it here and here)
Although it was easy to live with and just meant she was prone to water infections or UTI’s. As long as she took her antibiotics she would be fine unless she became resistant (which she did twice!).

One of the most difficult times though was when she was 10 months old. We had gone to hospital because she had a high temperature again and we were sat talking to nurse, when E suddenly went ridged in my arms and started to seizure because her temp had spiked.

At the time I had never felt so helpless and scared that I would lose one of my children. The hospital were great though and whipped her into a room and brought her temperature down.
Or the first time she a was put to sleep for a cystoscope and screamed to whole time fighting against me, the mask and the doctors. She was strong for a 1 year old. Eventually she settled and went limp in my arms because she was asleep. I left the room with tears streaming down my face because of how upset she had become and because I couldn’t be with her.
E has since had more tests another op and is doing well on her antibiotic.

But for me personally the day Baby was born and the weeks after where the most difficult things I have overcome. (read about it here)
You see after an easy pregnancy and semi easy birth (or as easy as birth can be) I was given the shocking news she had Down’s Syndrome.
Because of me not knowing much about down’a syndrome I was scared of what it meant. I had never really been round anyone who had a Down’s Syndrome. I thought my life was over, that people would blame me because I had carried her for 9 months, that my husband would leave me saying it was all my fault. I was scared I would reject her and that I wouldn’t be able to fully love her because of her condition. I worried that I wasn’t a good enough mother to be able to cope with everything she would need because I didn’t feel like I was a strong enough person. I was scared for her and what kind of life she would have and this was all within an hour of just giving birth.
I hadn’t even had a chance to properly clean myself up and I was already having to change and reprocessing all the dreams and hopes I had thought up while I was pregnant. (or so I thought at time before I researched and learnt more about her condition and realised DS isn’t anything to be scared of)
My head was a mess of confusing and conflicting thoughts because when I looked at her I still saw my baby, I had created her, I wanted the very best for her and she was apart of me no matter what. She was mine!

So as I held her in my arms and tried to make sense of it all plus get her to latch on for her first feed. During which she started getting very sleepy or so I thought. Within seconds I noticed she wasn’t sleeping but turning a grey colour and her lips were going blue. (the scariest moment of my life so far)
My mother and husband ran to get doctors and she was whisked off to neonatal to be given oxygen support.

She deteriorated through the night and went from only needing a bit of support to be completely ventilated on nearly 95% oxygen. She stayed like that for 2 days and in hospital until she was 23 days old.
I wasn’t able to stay with her in neonatal and was left in a room alone with only my ever confusing thoughts.

The hardest thing I have ever had to do was leaving her in the hospital when I had to go home. That night walking into my house and seeing everything I had laid out for her was torture because at that point I didn’t know if she was even going to make it home. (you can read about it here)

Eventually Baby got better, came home and quickly expelled all the fears I had after she was born. She showed us just how amazing she is.

So here are some of my most difficult and scariest moments of my life. I know to some they might not seem that bad or difficult but they were to me and I have overcome them all.

One thing I know is that I am glad for all the difficult times I have had in my life because they have taught me something about myself, shown me how strong I am or made me realise something I was missing.

Did you learn anything from a difficult time in your life? Did you come out the other side a stronger person?

Nikki ❤

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Fun in unlikely places.

Today has been a roller coaster of a day with me being extremely stressed and on what can only be described as “high alert”.

Today E had the hospital for her operation to correct her vesicoureteral reflux.

I have been trying not to think to much about recently but have been failing and going out of my mind with stress for days over it instead. It got to the point that I was barely able to type a full sentence about how I was feeling since Friday. I can say now that after it’s all over and I have her home (it was a day surgery), that it’s a huge relief to know it went well.

To try and make it easier I brought all her favourite things such as pj’s, slipper, Teddy’s, snuggie and blanket, so she would be as comfortable as possible and able to relax in the unfamiliar surroundings.

As you can see she made herself at home pretty quickly!

While we were waiting for E’s turn in theatre. A lovely ward play supervisor came to E’s bed and offered her a doctors kits to play with. She explained to me that it’s helps the children become less scared of the instruments the doctors might use by playing with them first.
I happily agreed and she brought E her kit.

E was in her complete element, specially with her being an avid Doc McStuffins watcher and fan. She knew what nearly all the little tools did in her kit with out needing my help. She spent at least 20 minutes listening to both mine, hers and doc’s heartbeat.

She even tried listening to her eye, which I found super cute.

Here are a few of the other ways Doctor E made doc feel better!

Now I know I am bias but to see her play like that was just the cutest thing I had seen in ages and made me realise just how clever and grown up she is.

Also the kit really did help because when we got to theatre E was a lot more relaxed and happy. She even fell asleep cuddled in my arms singing “twinkle twinkle little star”. Where as the last time she had a similar surgery in the same hospital, she screamed the theatre down and was fighting me and the doctors off (quite well I might add for a 1 year old at the time).
This time the kit made things easier and she even had fun too. So much so she was a little gutted when we had to leave the kit there for other boys and girls that go to the hospital.
(luckily mummy has already brought her a Doc McStuffins dressing up outfit and doctors kite in sales for her birthday)

I really do love this idea though and advise anyone who little ones are going into hospital to do something similar. I am amazed at how much it helped. I have always tried to make doctors seem fun to E because of her many hospital visits with her kidneys (that’s part of reason I got her watching Doc McStuffins) and I hope to do same with baby too.

I am so glad today went as well as it did though and there were no tears from me or E.

Nikki ❤

magic moments

let kids be kids

A lot playing on my mind!

Tonight I am a little bit numb, either that or I am not letting myself feel my emotions because I need to process the days events.

This morning E had a hospital appointment but I didn’t know what was going to be said or if anything would happen.

To understand I should probably start at the beginning.

See E has vesicoureteral reflux (a condition where urine leaks back up from the bladder towards the kidneys) on one side and a duplex kidney (where her kidney has duplicated and become 2) on the other.

We found out about this shortly after E was 3 months old when she became very ill with a raging temperature and was hospitalised for 2 days due to a urine tract infection (UTI).

At first they didn’t know what was causing her temperature and she had to have lots of test run on the poor little mite. Luckily it was sorted with a course of antibiotics Trimethoprim (which is aniseed flavour. Not an easy medicine to give a 3 month old baby that’s never tasted anything but breast milk!) and then she had to have had to have 5mls every night before bed, as a precaution while they run more tests.

In the months that followed, she continued to take the trimethoprim while they did ultrasound scans (that’s how they found the deplex kidney), Micturating cystourethrogram (MCUG) (they insert X-ray fluid into the blander through a catheter to check if it leaks out of bladder and goes back up to kidney. This is how they detected the reflux) and a dimercaptosuccinic acid (DMSA) scan (this is a scan to check for scarring to the kidneys due to UTI’s. Luckily E’s kidneys weren’t scarred).
E was put under a consultant and then a surgeon due to how serve her reflux was.

She did fine with the Trimethoprim for well over 6 months with out any UTI’s but then at 10.5 months old she got a really nasty one that was resistant to the trimethoprim. She again had a raging temperature and I was sent from my doctors to the hospital.
It was lucky that we got the the hospital when we did because 10 minutes after we arrived, E’s temperature spiked and she ended up having a febrile seizure.

When E had the seizure it was the scariest moment in my life (until Ivy came along with her surprises).

I remember it all happening as clearly as day. We were sat at the nurses desk being bucked in. All of a sudden E jumped and then went stiff and started to scream/cry. The nurse grab her an went into next room to find a doctor.
There were 3 in the room when we sat down minutes before but they had all disappeared to deal with other patients (typical!). I took E back as she went to find a doctor and we scurried down the hallway where we were greeted by more nurses that took E into a side room. I just remember being stood tears streaming down my face as I watched them give her oxygen and try to bring her temperature down. It seemed like everything was going in slow motion. Finally she stopped fitting and stopped crying but I didn’t recover as quickly. The nurse who was booking us in was lovely and I can’t fault her one bit. She was due to finish work and E was going to be her last patient and she ended up staying 2 hours longer then she needed to. E had a 4 day stint in hospital that time because the antibiotics didn’t work straight away, due to her being resistant to trimethoprim. Luckily amoxicillin worked the second time round and she was sent home.

After that her surgeon wanted to do a cystoscope. She went in for a day surgery and luckily it went well.

It didn’t really help that due to my nerves and anxiety beforehand. That on the morning me and my husband had a huge argument an I stormed out of house and ended up going to hospital alone (I had all the money in my bag, in my purse). So he couldn’t come after us if he wanted to.

Since then E has been fine. Her kidneys grew and her surgeon and consultant stopped her antibiotic (the weekend of my wedding, like I didn’t have enough to worry about). She did really well for over a year she didn’t have any UTI’s, until December 2013. She wasn’t hospitalised that time although when they sent the sample off for testing they found that she was now resistant to trimethoprime and amoxicillin (joy!).

Then we had our appointment with her surgeon at the start of the year. I told him about the UTI in December and he weighed up what he was going to do. He said he would get back to me on a decision once he talked to her consultant.

This lead me up to today. I met with her consultant who explained that E will be having surgery to fix the reflux with Endoscopic surgery within the next 6 months.

My poor baby is going to have to be put to sleep again. I just hope this time I will be able to keep my nerves and anxiety at bay because I don’t want to go through sitting in the parents room again alone.

I am hoping it goes well and we can finally have this all sorted because the. It is only check ups with her duplex kidney which seems to work well with each other.

I just want to fast forward past it all. I want it to be over with. I hate waiting for the next letter to come through post.

Nikki ❤