Houston, we have a tubie!

It's been a while but here I am again, and what a fortnight we've had. On the 29th Jan I noticed that Anna's wet nappies were smelling a little bit more distinctive than usual. The following day I noticed a visible discharge. I decided to give it a day or two, thinking it would just clear up on its own. On the Saturday morning, Anna woke at 2am for a feed which is fairly unusual for her. At 4am she vomited this entire feed up. The whole of Saturday she was running a temperature and was very lethargic, not the smiley little Anna we're used to. In a space of 29 hours we had only managed to get her to take 5oz  of milk. By 5am Sunday morning her temperature had hit 39.7, paracetamol was not controlling her fever and she was inconsolable, so we called 111 who sent a fast response car out to us. On doing her observations, the paramedic found her pulse rate was over 250. He called an ambulance who took us straight to Birmingham children's hospital. When we arrived, she had to have an in-out catheter to obtain a urine sample, which showed she had a pretty severe urine infection. One of the nurses later explained that her urine was full of live bugs and pus, she had sepsis and they were keeping an eye on her as it would not have been unusual for someone in her condition to develop toxic shock syndrome. She was put on a saline drip though a canula, formula running constantly at a slow rate through a nasogastric tube and was hooked up to a heart rate monitor for 2 days to keep a close eye on her stats. She had numerous blood tests and urine samples taken. The first set of antibiotics used were not treating the infection sufficiently, so a stronger, higher dose of antibiotics were prescribed. She was also on paracetamol and ibuprofen to control her temperature and pain levels. 

All of this took a huge toll on Anna's feeding. Many of you will know already that Anna has been struggling to gain weight as a result of her condition, and has recently been put on a high calorie prescription formula to try and bulk her out a little. Her low weight made it even harder for her to fight the infection off on her own. What we were not aware of is that many children in a similar position to Anna have no concept of pain until it becomes unbearable. When we are feeling a little sick, we know where the pain is, we know how to indicate that we are in pain and we know how to treat it. It appears Anna had had this infection for a while, but hadn't registered the pain making it impossible for us to know that there was anything wrong. This horrified me, god knows how long the infection had been festering away inside her for. This illness has now, for the mean time at least, took the majority of Anna's feeding ability away from her. Together with the paediatrician, dietician, nurses and speech and language therapists, we have put a plan in place to ensure she is getting the nutrition she needs. Sam and I have both been trained in NG feeding, and will now be topping up the majority of her oral feeds with milk through the tube, as well as an additional 400ml overnight feed. We knew it would eventually come to this, it was just a matter of when. 

After 11 days and 10 nights, I am glad to say we are now home. I couldn't write this blog without mentioning the wonderful people, patients, their families and staff, we met during our stay at BCH. The staff work tirelessly and put 100% into everything they do. We were put on to the renal ward for the last 5 days of our stay, and were taken under the wing of the renal families right away. Those children are seriously the most inspiring kids I've ever met, and I wish every single one of them all of the luck and love in the world, here is to hoping they get their match soon. 

So, now our baby is a tubie! Below is a picture of her rocking her new tube! And she picked the right week to do it, as it's national tube feeding awareness week this week. I'm happy to say she's full of smiles again and off the antibiotics, with normal urine once more! We're meeting our community nurse on Thursday and things will go from there I guess. I am now off to have a long soak in the tub and an early night before we're back to the normal drill tomorrow. Hope everyone's been well and thank you all for your well wishes whilst Anna's been in hospital - having the support of our family and friends is the only thing we need at times like this and luckily for us you're all great 😊 x

Happy freaking New Year!

I want to be brutally honest, for myself, because sometimes it is better to get things out than keep them in. I feel so bitter as this year ends. This was supposed to be our year. Everything started fantastic. I had just finished college and was looking forward to starting university, I had a job I really enjoyed to return to, a brand new beautiful baby girl to watch grow and flourish. We bought a car and I managed to gather up the courage to go back to a weight loss support group and start different fitness classes. And then our entire world came crumbling down when we were told our beautiful baby would most likely be severely disabled. Life was put on standstill. Gone was the excitement about watching her grow, instead replaced with the fear of whether she'll ever crawl, walk, talk, keeping watch over every single little movement she made incase she had a fit, or incase she stopped breathing. Don't get me wrong, I wouldn't change Anna for the world. But sometimes, especially days like today, days of reflection, I feel like she (and us) have been absolutely robbed blind for no reason other than bad luck, and that is not fair. I do not care one little bit if that makes me sound like a petulant child, I'm finding more and more just lately I act like that a lot. My self esteem has hit rock bottom. I have piled on weight and am now bigger than I have ever been. It is a daily struggle to pull myself out of bed and paint on my okay face, pretend I am the same person I was before our lives were turned upside down. Slowly I am coming to terms with the fact it is okay for me to feel like this. But I don't like it. Next year will be a happier one, because we know where we stand now. My priorities no longer lie in being the "have it all" mommy I once was. I know now I cannot have a career, be the perfect mummy and fiancée, have a spotless house and look like I've just stepped out of a centrefold all at the same time. This year I will take things one step at a time, and hopefully that will bring me some peace.

I just want to thank all of my family and friends, especially Sam, my mum and my Aunty Karen for being my absolute rocks this year. And for putting up with me and my mood swings. I'd like to apologise to everyone I have distanced myself from - please know I haven't done this intentionally, I've just become so wrapped up in my new life as a special needs mummy and have become so unbalanced in the way of a social life that sometimes it all becomes too much to keep on top of everything. And I'd like to wish everybody who has bothered to take the time to think about us this year a fantastic New Year. At midnight I will he raising a glass and waving goodbye to the whole heap of crap 2014 brought us, and welcoming 2015 with open arms. 

Confirmed diagnosis.

On Monday 27th October, we had an appointment with the neurologist at Birmingham Childrens Hospital who has been looking at Annas case with the general paediatrician. In the room alongside her were the metabolic consultant, the genetic consultant and a sister from the neurology ward, all of whom have been looking into Annas case. The good news is that Anna does not have a neurological, metabolic or genetic condition. The 3 consultants we saw are happy to discharge Anna from their care. It may be that if and when Anna begins having seizures, we will be back under the neurologist, but for now, we don't need to see her again (less appointments, wahoo!). The doctors are now 100% certain Anna contracted congenital CMV in utero. They have told us they expect her to be limited mobility wise, however they are positive that there is some learning capability there. We are not sure of the capacity that she will have yet, but her interest in her surroundings is proof enough to the doctors that she is capable of learning, even if it is just a little. Anna does have cerebral palsy. And she has sensorineural hearing loss in her left ear. The nerve and cochlear are not connected, so she is not able to even be issued with a cochlear implant. Thankfully her vision is perfect.

Getting a diagnosis is harder than I thought it would be. I assumed that when we had a diagnosis, I would know exactly what we were looking at and could look to the future. But I haven't. If anything I feel a bit at loss. We've come to the end of the road, and whatever happens, happens. I'm hoping it will get easier in time, I'm sure it will. I guess we'll just have to wait and see. At the moment, I'm just trying to take things one day at a time. 

I would also like to use this post to reiterate that Anna IS NOT contagious. Just like when we have a bug and then get better. This is whats happened with Anna. Coming near Anna will not infect you and nobody has any reason to think otherwise. This point completely passed me by until the neurologist mentioned it, so I feel as though I should put it out there in case anybody thinks otherwise. Other than this Anna is still happy as ever! She now has 2 teeth, lots of hair and is getting stronger each day. Her physio is going well, and we have now also started having occupational therapy every fortnight. Already her personality is starting to shine through. She seems to have an eye for the men, and a bit of a sweet tooth! She still thinks her brother is the best thing since sliced bread, and enjoys having rides on his back. She loves being outdoors and looking at the trees, giggling when the wind blows on her face. And of course, Sophie the giraffe is still her greatest companion!

Please remember if theres anything at all you want to know about CMV or Anna you can ask us and we won't be offended! We welcome people asking us questions, and want as many people to be aware as CMV as possible to try and prevent this happening to any other family.

Retard spaz.

I've been wanting to post something like this for a while, but have struggled with wording it in a way that doesn't sound either whingey or aggressive. Please note that aggression or moaning is most definitely not the intention of this post, it is simply to make people think before they speak. I would also like to point out that this isn't directed at anybody in particular, it is much more a generational thing. So here goes...

The other week I was out shopping when I overheard a conversation between a young woman and her male friend. One of them said something silly, to which the other retorted "you retard!", followed by laughter on both parts. Since then I have repeatedly noticed people, jokingly in most cases, referring to others as a "spaz" or a " retard". Of course to a large number of people this wouldn't seem offensive at all (even in this day and age!). It is said as a form of mild teasing, without much thought. I try not to be offended. But I am. I am offended because it is used as a form of teasing. It's a negative word which is derogatory towards people such as my daughter. In my opinion, calling somebody a spaz is on a par with calling somebody a n*gger (another word I absolutely detest.). These words are old and outdated and have no place in modern day society. My daughter has spasticity in her muscles,  and will most likely have an intellectual disability (formally referred to as mental retardation). This is who she is, these medical terms are part of her life story. It doesn't make her less of a person. Yes she will have struggles, but she still has all the parts of the human body that makes us human. She is the same as the rest of us. So why should these words that define her condition be used as an insult? That is as absurd as me using "you abled bodied person" or "you intellectually average guy" as an insult. Silly really, isn't it? Please guys, just think about what you're saying before it comes out. I know people don't say it spitefully, but it doesn't make it any nicer or easier for those with disabilities, or those caring for people with disabilities.

Anna had her grommets fitted and her sedated hearing test on the 19th September. As usual, she bounced straight back and was her usual happy self almost right away! We don't have the results yet, but when we do I will post again. This morning we've been to see a genetic councillor to start ruling out any genetic conditions. Anna (and I!) are both really enjoying special needs baby group, which we started a few weeks ago. Anna seems to be coming on, her head control is improving, albeit slightly but any progress is worth recognising! She is also trying to grab at things more and more. And she still loves and dotes on her big brother!

An update.

Yesterday we found out Anna has a sort of form of epilepsy. Her vacant episodes are in fact seizures, as we expected. According to the EEG, they last for around 30 seconds at a time. As the paediatrician  only received the report during our appointment yesterday morning, anti convulsion medication wasn't prescribed, however I am expecting a phone call this morning with details of the prescription she will be put on to control this. As she gets older, the dosage will be increased in order to  minimise the severity of her seizures. I've been watching Anna like a hawk, for some reason since getting this diagnosis I'm expecting her to start having full blown seizures. Apparently her choking episodes may also be attributed to this. 

The good news is Anna doesn't have a metabolic condition. We are relieved to hear this,. The test on her newborn heel prick shows that's CMV was present at birth, so we're now 99% sure that this is the cause of her brain damage. What I'm struggling to understand is why CMV isn't routinely tested for in newborns. If this had been picked up earlier, I wouldn't have had to go through the struggle of getting somebody to listen to me and take me seriously when I suspected something was wrong to begin with. Anna would have had a diagnosis sooner, and measures could have been put in place to ensure Anna was getting the support she required right from the get go. However as this isn't the case, I have to try and let it go and concentrate on the fantastic support we've received since diagnosis. 

Anna is still happy as ever. Like any baby her age, she has started teething. Her lumpy bumpy gums are causing her some discomfort, but after a quick cuddle she's back to her usual smiley self. She's laughing more and more, usually at Leo comically hitting himself for her entertainment, my kids are nuts! I wish I could say the same for myself. I am not coping well. I'm exhausted. I'm not sleeping well at all. I'm waking at several intervals through the night to check that she's still breathing, not choking, hasn't had a seizure. Why is it that all the evil thoughts like to creep into your head when it is time for rest?  I know I've got an amazing support network around me, but I feel so lonely. It's so hard seeing people babies develop normally (not that I'd ever wish this on any parent!) and knowing my baby will probably never do these things. And I feel so selfish for feeling like this. I should just be grateful that she's here and happy. She's happy, and it's her that's going through it all! I have no place moaning about how tough I've got it when Anna has a lifetime of difficulty and prejudice facing her.  I know there's nothing I could have done to stop this, but I still feel partly responsible. My one job was to grow her safely, protect her, nourish her with goodness until she was ready to enter this world, and I didn't do it. I know logically that it's not my fault, but it's hard not to play the blame game when you're faced with such unexplainable situations. 

I feel terrible for Leo too. He doesn't understand the severity of the situation. And to top it off, Anna has an operation on her ears on his birthday. It's the only date they have available. He feels left out as it is, so for the dates to collide in the way they have is awful. I just hope as he gets older he realises we don't love him any less, he is just as loved and cherished as Anna is. All I can do is try and make it up to him by throwing him the best birthday party possible. 

Its a girl!

On this day last year, we discovered we were expecting a little girl. I cried tears of joy when we found out. I couldn't believe how lucky we were to have one of each. After the absolute shambles that was our anomaly scan we booked a private scan, I was so thankful to have a decent photograph of our baby to share with people. And the bonus was she was a girl! I wanted a little girl so desperately, a little lady to buy pretty dresses for and play dolls with (yes, I am one of THOSE mums!). I imagined a bossy little madam charging around the house, making us play mummys and daddys, making up dance routines, writing and performing terrible songs that we'd think were fantastic regardless. I imagined her teenage years, the endless arguments we'd have over the amount of make up she deemed necessary, whether high heeled school shoes were suitable or not. I laughed as I remembered my teenage years and thought "great stuff, I have all that to come!". I imagined her blossoming into a young woman, helping her with her university application, shopping trips, relationship advice, weddings, babies. I vowed that my daughter and I would have a relationship very much like the one I have with my mum. My mum is my best friend, she knows absolutely everything there is to know about me, I do not know what I would do without her. I prayed that Anna would feel that way about me. I am slowly coming to terms with the fact that in all likeliness, these things won't happen. It breaks my heart that my little girl won't grow up to do the things she was supposed to do. We'll rewrite our future of course, only time will tell how much she will be able to do. And it will still be filled with happiness and love. Just in a different way to how we imagined. And as my mum so beautifully put it, she'll be our very own little Peter Pan, the girl who doesn't grow up. 

Anna had her sweat test for cystic fibrosis 2 weeks ago. We've heard nothing yet, I'm hoping no news means good news. Yesterday we received copies of the referral letters to the ophthalmologist and the neurologist. On one of these letters, we have the correct term for her brain malformation - polymicrogyria. In addition to this, there are cysts present. We have the appointment with the neurologist in just over a week, so hopefully we'll learn a little more then. Physiotherapy seems to be going okay, Anna's upper body strength does seem to be improving slightly. I've had to rearrange the audiology review due to personal circumstances, but she appears to be hearing more these days too. Its a busy week again this week appointment wise. I probably won't post again until after we've seen the neurologist. I just wanted to say thank you all again for all of the support and love thats been sent our way, its times like these you realised how lovely people are. 

Welcome to Holland

This poem was shared with me by my mums cousin. It sums it up so brilliantly, so beautifully put. I just had to share it with you all.

WELCOME TO HOLLAND

by

Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reservedI am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.