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Sunday, 19 April 2015

Can You Help?

Following on from all the upheaval of the last few weeks I thought now would be the time to ask for everyone’s help, no matter how big or small in trying to raise funds/awareness for Cystic Fibrosis. As I have said in previous posts, we remain ever positive and hopeful of a cure being found if not a treatment which keeps CF symptoms at bay for sufferers like Harriet. I am certainly not asking for money although if you’re mega rich and want to make a huge donation then go for it!

First off we collect used stamps for The Stuart Gordon Fund. All money made from this goes directly to a researcher who believes he is working on a potential cure for Cystic Fibrosis; see here for full details. We have had so many from factories, schools and workplaces so it's easy to do and it all adds up. There is a poster here you can print out and stick up wherever you work, workout, worship etc. Just try to ensure there is at least a one centimetre border around the stamp please.  

We have a stall at Westoe Craft Fair, South Shields, 10am-4pm on Saturday 20th June so anyone local please pop along and say hello. Also to anyone living nearby there is a charity night at The Hebburn Legion Club on Saturday 4th July organised by another family affected by Cystic Fibrosis. A group of us are going so if you would like a ticket click here. It would be great to see familiar faces there supporting a great cause. And if you can't make it how about donating something for a raffle prize?

Anyone having a Spring clean like I am at the minute can sign up here to donate any old clothing with the proceeds going to the CFTrust. I have also spotted these, grow your own sunflowers for CF, which would be great to do if you have little ones who love getting dirty in the garden!

Our latest fundraising idea is to collect as much unwanted gold as possible! I am sure a lot of you reading this have broken earrings, necklaces with knots in, rings too big or too small that are just gathering dust in a jewellery box. You probably wouldn't think to do anything with them, and even if you did you would not get much money for just one or two pieces but we may get more with a substantial amount. If you find anything and want to do some good with it then please pass on to me or a member of my family. Like I said before I make a lovely cup of tea for anyone who wants to bring me things for our cause!

Lastly, we still have my husband Chris, sister-in-law Emily and good friend Marie all training hard for the Great North Run in September.  If you would like to sponsor one of them or all three (!) please do.

Many thanks to everyone who has already done something for Cystic Fibrosis but as I have said before we must keep going and continue to think of ways to raise money in the hope that one day this awful disease will be no more. If everyone who read this could do just one thing that would be incredible.

If you think you can help in any way please get in touch via my social media pages. You can also help by simply liking or sharing my blog posts on Facebook or Twitter. You can also subscribe to my blog here, there is a new post every Sunday at 2pm. If anyone has held a successful fundraising event or has any ideas on what we can do next please let me know.

Sunday, 12 April 2015

Harriet's Stoma Reversal Operation - The Worst Case Scenario.

Being a cup half full kind of person I genuinely thought that Harriet's reversal operation would go something like this: 

Go to hospital.

Have operation.

Baby fixed.

Come home.

What an idiot...

Apologies for dragging this out but I would like to think that any other parent in the same situation would want to know all the details - I know that I would. 

When we went down to recovery to collect Harriet she looked so pale lying there. I had to laugh as she was on her side and the nurse that had been sitting with her said she had tried several times to lie her on her back but she just kept forcing herself back over. In the end she had given up and just let her! Unbelievable. We got her back up to the ward and she seemed comfortable as she was hooked up to a morphine machine. She was asleep most of the time but spent the night crying out in pain every ten to fifteen minutes. Thankfully she didn't need any extra oxygen and all of her observations looked good. She remained nil by mouth, which in the beginning was easy as she was heavily sedated from the intravenous pain relief. 

Saturday passed without incident and despite still looking a little puffy and pale everything seemed to be good. Being a weekend, none of our usual doctors were around and later that night Harriet's temperature spiked. The nurse sent for the resident HSO who immediately suspected an infection of some sort and wanted to take bloods for analysis. When he tried to find a vein she barely flinched which he later said was when alarm bells rang. The surgeon who had assisted in her surgery appeared (straight from theatre still in scrubs at one in the morning!) and he began to discuss possible causes of infection, one being that her bowel was leaking at the join and that Harriet would have to return to theatre immediately. Needless to say I was distraught. This was not part of the plan. 

Firstly they would try antibiotics overnight to see if that reduced her temperature. The wound site looked so inflamed and angry, and she was so pale and listless. The doctors were clearly very concerned and there was absolutely nothing I could do to help. I just sat by her bedside the whole night praying she would pick up and thankfully she did. By morning her colour had returned a little and the wound looked better. Throughout that Sunday she started to slowly wake up, her morphine was reduced, she played with some toys and things seemed to be looking up. Harriet continued this way all through Monday and some of Tuesday but all the while we were still waiting for that elusive first dirty nappy. As nothing was happening, her tummy was starting to become very distended and by the time the CF team came mid-morning on Tuesday they were visibly concerned at just how swollen she had become. The surgeons on the other hand assured us that this was all normal and we just had to be patient. The CF team wanted a routine chest X-ray so we headed down there at lunch time. On our way out the radiographer ran out after us and asked us to come back. The consultant down there had spotted something and said that Harriet needed an abdominal X-ray immediately.

By this stage Harriet's tummy was so big that all of her internal organs were getting squashed and breathing was becoming very difficult for her. We returned to our room to hear the outcome of the X-rays, not really expecting much if anything at all. The surgeon returned and from looking at the X-ray broke the news that he had now changed his mind and felt that the best way forward at this point was going to theatre again. Now. This was all beginning to feel like a nightmare. What on earth had been seen that had caused such a dramatic U-turn in events? 

We were given a few different scenarios ranging from okay to horrific - always what you want to hear - and we faced the walk down to theatre again. The only saving grace here was that it all happened so fast. Basically, we were facing what we had been told only that morning would be a worst case scenario. During our wait while she was in theatre I really struggled to think positive as I would normally. I discussed it with Chris and said I was sick of always concentrating on the good and focussing on a positive outcome because every time I have been left floored and totally unprepared for what we have been left to deal with. Maybe I should at least allow myself to consider the worst case scenarios instead of dismissing them so readily.  To this end I then convinced myself she would return from theatre with her stoma again and that she would have it for life. Probably a bit over the top looking back but at the time I was certainly not in control of my emotions! 

Finally the surgeon came back and told us that the cause of her distension was her cystic fibrosis and he had now treated the problem. He had to go in again to rule out all possibilities and the blockage she had suffered again was down to CF. If this was to happen in the future they have ways to unblock without resorting to surgery. As if all this wasn't enough they had inserted a long line into her chest by making an incision in her neck. It looked horrendous but meant they could give her nutrients (TPN) and take blood without having to continuously use her as a pin cushion which was obviously never pleasant. 

We were now back to square one in terms of recovery and the next day was spent with Harriet mostly sleeping off two anaesthetics and boatloads of morphine. Then, finally, two days post-op we got there - the first ever dirty nappy! What a relief after everything that had gone on. And I am pleased to say, like any other baby, she's not stopped since! In terms of her weight, she gained over two kilos in fluid and literally looked like some had inflated her! Again, after a few days and a lot of wet nappies, this subsided. Throughout all of this Harriet had no problems or issues chest-wise which was another bonus. 

Spending a holiday weekend in hospital was not fun but there were a few perks. We got to meet some of the Newcastle Falcons rugby team who came in dishing out lots of chocolate and Easter eggs. The hospital had that many donated eggs I was getting them on a daily basis (goodbye old clothes) and the staff on our ward were all so lovely which made things so much more bearable. 

On Easter Sunday we got our first laugh and smile out of her for over a week. She had come back to us and gradually became the happy little baby we were used to. Her milk was reintroduced, in very small volumes at first, and again I faced something that I hadn't expected. She was now ravenous! I had next to no sleep for two nights as she was given tiny amounts of milk every three hours. It did get better as the volumes went up but it was very hard in the beginning. Once she got close to her usual milk volumes I began to wear everyone down and eventually they let us go home mere days after her second surgery! Not bad all things considered. 

It is amazing to see the stages of recovery happening before your eyes and despite things not going quite to plan we got there eventually. I really hope this helps parents facing similar circumstances. I would definitely have liked to have been a little prepared for what might have happened but hindsight is a wonderful thing. It's done, we got through it and so will many others. 

Comment below if you have any questions or get in touch via my social media profiles Facebook or Twitter. Please do not hesitate if you want to discuss anything mentioned in this blog post. 

Sunday, 5 April 2015

Harriet's Stoma Reversal Operation

Dad doing last ever bag change!
So as we all know, Harriet was due to have her stoma reversal operation last Friday. This had been looming since her first surgery at day five of life and to be honest I had quite mixed feelings towards it. I know that it's the best thing for her but to see your child go through something like this, especially a tiny baby, well, there are no words really. I even started to think that I could happily deal with caring for her stoma forever, but it's not about me, it's about her and her future.

There was no overnight stay for us so alarms were set for 3.30am to feed her up until the cut-off point of 5am. From there we said our goodbyes to Nancy (who was over the moon at the prospect of a day with Grandma!) and headed off to the hospital. We arrived at 7.30am to be greeted by a rather large queue to get onto the children's ward, something we definitely weren't expecting. After 'checking in' to seemingly the worst holiday ever, we had to sit and wait. And wait. And wait.

After routine bloods, admittance forms and general observations being carried out we then faced another wait. We had assumed that having to be there first thing in the morning was indicative of Harriet having her surgery first thing but it certainly wasn't looking that way. The poor thing was offered some water at about 9.30am but she wasn't overly impressed. We spoke to an anaesthetist who discussed possible pain relief measures. I don't know why but this made me really upset; I think it was because she was so nice. Niceness always gets me. Talks of epidurals, morphine drips and suchlike really brought it all home and that this was really happening to her; to us; my precious baby.  

Time was now ticking on and we were told that it would be more likely that Harriet's surgery would now be after lunch. How was I going to pacify a starving baby? Thankfully she went off to sleep and we managed to keep her entertained ‘til about 2pm when at this point she was really starting to become unhappy. I couldn't even entertain the notion of the surgery now not going ahead but as time passed it really was looking more and more unlikely, to me at least.
Just before going to theatre!

Little did I know that these surgeons - truly special people – sometimes work for days without sleeping. They are incredible. Finally, at about 2.45pm, Harriet was called for and we faced the long walk down to the children's theatre waiting room. Before her first surgery, I had faced it alone and found it totally traumatising but at least this time Chris was there with me too. Sitting with other parents all having to say goodbye to their children and pass them over to a total stranger is something I never ever want to witness again. When the time came to hand over my baby I was a mess. I had been trying to hold myself together for the sake of the other children in the waiting room but I couldn't help it. We walked away praying that it would all be over soon and that the operation would be a success.

In an odd twist of fate, we were then taken to what was going to be home for me and Harriet for the next however many days/weeks - the exact same room we had been in when she was born. Someone asked me if it was going to bring back bad memories or cause me upset but it was somehow comforting, plus this time around we were here under such different circumstances.

After a two and a half hour wait, during which time I tried to keep as busy as possible, the surgeon came to find us and tell us that the operation had been a success. As you can imagine, we were overjoyed to say the least. Shortly we were able to go down and sit with her in recovery till she was well enough to come up to the ward. I wasn't sure what to expect in terms of how Harriet would be post-op but she looked okay, maybe a little pale but who wouldn't be after major surgery? We were just glad that it was all over with and now we could focus on getting her better.

We knew that the next few days would possibly be hard but as long as she was comfortable and settled then that was all that mattered. It is such a relief to now have this operation over and done with. She is such a brave little girl who has already undergone so much in such a short space of time. Living in a children's ward temporarily isn't easy but it really makes you think just how lucky you are. I feel utterly ridiculous moaning about having to stay in for two weeks when she was born as some folk are in for months and months. 
Big sis and little sis post-op.

I really can’t overstate just how brilliant our NHS is and we’re all so fortunate and lucky to have this wonderful institution looking after us. It truly is an amazing organisation. I have nothing but admiration for everyone involved in our hospital experiences from surgeons to nurses to reception staff as well as the other parents we’ve met. Such amazing people who all played a part in Harriet's time in there. Hats off to them all!

Sunday, 29 March 2015

Our Morning Routine

At the moment I am up at approximately 5am with Harriet and more often than not her big sister is up at the same time too. The difference is that Harriet will go back to sleep; Nancy will not! Lately we have had lots of bags coming unstuck on Harriet’s tummy overnight so to wake up and see she’s covered in poo is a nightmare. I know there’ll be no chance of going back to bed as it’s quite a process to clean and redo. I’m sure every parent reading this has been there though, and there’s not much difference to this and a nappy explosion. I just have to be well prepared with pre-cut bags and have all the products ready and set up. Good job I have early starts as we do have a lot to fit in, starting with breakfast for Nancy and I…

Sleep deprived and desperate!
I always have the same thing every morning – I’m a creature of habit, although I may switch up the topping depending on what we have in. Mine is porridge with half a banana, cinnamon and honey. I make sure I get plain porridge with the only ingredients being oats. I try to keep it simple. At the moment I am adding a couple of golden berries that I picked up from Costco which I’ve just joined. (It’s amazing. Why didn’t anyone tell me about this place sooner!?) The packet claims the berries are anti-fatigue which I am slightly sceptical about but anyone who is a parent will know how desperate things can get. I also like to have a mug of hot water and lemon before I eat my breakfast. I tend to drink this while I am sorting Nancy’s breakfast, putting out dog food and water for our lovely cocker spaniel Arthur, and preparing Harriet’s medicines. I am trying to be healthy but I think it is going to be a long road to my pre-pregnancy jeans!

Depending on how Harriet is she has six syringes of various medicines, all with different amounts, antibiotics to keep infections at bay plus additional vitamins and salt. She has four bottle feeds a day alongside breastfeeding, and we have to inject salt into each bottle as well as administering it orally twice per day. Harriet has salt supplements as her body’s cells don’t pass salt and water which is what would normally happen for us. The water thins down all our mucus but as hers doesn’t get diluted she is left with the thick stuff which can be a breeding ground for bacteria and infection. We have to keep all the syringes sterile too. 

Every time Harriet has any milk she has to take enzymes (Creon) to help her absorb all the nutrients as she is pancreatic insufficient. To help Harriet take these I use a pouch of apple puree. If anyone hasn’t spotted them yet, Aldi have started doing their own version which are a lot cheaper than Ella’s Kitchen where we were having to buy them in bulk. The contents of a tablet are poured onto a spoon full of apple sauce and she takes it that way – I got some funny looks doing this when she was a tiny baby! When she is older she will swallow potentially 30-40 of these tablets per day. 

Once the medicines and bottles are prepared I eat my breakfast then start Harriet’s treatment. First thing is physiotherapy, which we only do if she is unwell. She has two twenty minute sessions a day to help move the mucus in her chest. How this goes is anyone’s guess – I have actually managed to do the whole lot while she’s been asleep to the antithesis of hysterical crying from the get go. Once the physio is done, next up are the medicines. Again this can go really well or really badly! There are certain ones, mostly the Flucloxacillin and the salt, that she hates and will try to spit out. We have found that taking our time and injecting tiny amounts at a time help Harriet take it all in. During all of this Nancy is usually very good, and will just sit and eat her breakfast and watch TV. 

Once the medicines are done all of the syringes have to be cleaned and sterilised for use later on that day. Finally, after all this, she is generally fed up and hungry so she has her bottle of high calorie formula (Infatrini Peptisorb) which washes down the contents of two different tablets (Creon and omeprazole). As I am typing all this it makes me realise how different things are for Harriet, but for us it has just become the norm. 

Most days this all happens smoothly and we can get ready and head out somewhere. (FYI afternoons are best for us if anyone fancies a playdate!)

Please comment below if you have any questions or get in touch via my social media profiles Facebook or Twitter.

To sponsor Chris Emily Marie.