Our very first blog post so I thought I better explain why this blog has been started!.
on 22nd July of this year after a very quick labour and an emergency c-section our second beautiful baby boy was born at the Leicester royal infirmary weighing in at a tiny 5lbs4oz. two days later we got to take our little bundle of joy home with a very excited big brother and started to settle into life as a family of four.
At five days old the midwife came out to do Stanley’s routine heel prick (Guthrie test) this is where they prick the baby’s foot with a needle and take several small blood samples to test for nine rare but serious conditions. She explained the conditions that would be tested for how it was done and that unless anything abnormal came up on the screening we wouldn’t hear anything else.
I doubt I will be the first to admit that I had never looked too much into this test and what it was actually for.. nor did we ever expect anything to actually come back from it. I suppose thinking back now Stanley had the symptoms of CF but as we never had any history of CF in the family and neither me or jack knew we were carriers we could put all of the symptoms down to other things.. sickness? that was reflux. constant nappy changes? his milk must not agree with him. no weight gain? that must be that he’s not keeping his feeds down. cough? apparently c section babies always have more mucus so we put it down to that. There were always things you could put it down to, things all babies had at some point.even though we had no idea that there was ever a chance Stanley could have cystic fibrosis as soon as I got the phone call to ask if we could go to the hospital for Stanley to be checked over things started to add up and I just had a feeling that I knew what we were going to be told.
During the phone call there was no mention of anything actually being wrong, the nurse on the other end of the phone simply said ‘ Hi I’m the respiratory nurse from the hospital is there any chance you and you partner would be able to bring Stanley into the hospital later on today as something has come back raised on his heel prick results and we would like to just have a look at him and check him over’. We agreed to take Stanley in that afternoon. I put the phone down and the first thing I did was google again what it was that the heel prick tests for. CF was the only thing that stood out – even more so that the nurse that had just rang was a respiratory nurse. why else would you need a respiratory nurse?
We arrived at the hospital at 3pm as agreed, the area normally filled by people waiting for clinic appointments was empty and we were greeted by a physio therapist, we were taken to a room at the bottom of the corridor and told we could wait here until the rest of the team arrived.. rest of the team? why would they need a whole team just to check him over?. 35 minutes later in walked a team of 5 people a consultant and his registrar, the physio therapist, a nurse and dietician carrying a pharmacy bag full of medicines and a pouch of apple puree ( will be explained later on). after introducing themselves the consultant went on to ask us what had been going on.. had Stanley been loosing weight even when feeding? to which we answered yes and his reply simply was ‘Well Stanley has cystic fibrosis’. and in that moment that was it our perfect little bubble as a new family of four was burst I turned to Jack and just cried it was all I could do, the whole team got up frantically searching for a box of tissues I sat there apologising because I just didn’t know what else to say, the doctor then went on to ask us what we knew of CF, which wasn’t a lot I think it seems to be one of those things most people have heard of but don’t actually know exactly what it is and unless you’re in that situation why would you?. it was like they then had to hit us with everything in one go..the list was endless..what CF was, what it affects, faulty genes, medicines, children for Stanley, more children for us, carriers, enzymes, physio, diet. In all honesty I don’t think either of us took in much until a few days after that.
The one thing Jack and I agreed was not to google. The only information we wanted to read was up to date and factual, we didn’t want to be bombarded with horror stories and the bad things that could happen. That night we went home and looked up the CF trust website, read the information booklets and even though they were all really positive, I personally just couldn’t see how all of these people could lead normal lives when there children had been given this diagnosis. Jack kept on saying we would be ok, Stanley would be ok that we just needed to know more,we both can deal with hospitals, medicines, treatments-we have been through that with Alfie who is tube fed had 19 operations to date and countless hospital stays. You can make life normal around that ,we refused to let it take over with Alfie and it wouldn’t with Stanley either. but how do you ever get your head around the fact your child has a life limiting condition. I cannot lose one of my babies was the only thought going around my head. How do you ever get your head around the fact you could out live your child.?
It’s something we have since decided not to focus on,Cystic Fibrosis is different for each individual in how it can affect them and as it stands the life expectancy is on the increase all the time, from what we have looked into so far the research going into cystic fibrosis and the information they are finding out is coming on leaps and bounds and this is expected to continue. Although there is no cure for Cystic Fibrosis as things stand.
We had promised Alfie that we were going to take him to Conkers on the Friday. so the next morning we got up,got ready and went to conkers for the day!no tears all day, no feeling sad.. just a nice sunny day out with both of our little boys because its true life does go on and things do have to carry on as normal!
The Monday after diagnosis we had phone calls from members of the CF team arranging to come out the same day. We cannot tell you how fantastic that team have been they are so hands on if there’s ever any questions to be answered they are there to answer them, we sat down with the physio and the specialist CF nurse again who answered the many questions we had , its amazing how many things can affect a person with CF, day to day things that we wouldn’t even think twice about. the biggest thing being bacteria, but we were assured time and time again ”It will become normal” the one thing we can say though that the worst thing is the not knowing. Jack and I both agreed that we both felt so much better and more in control once we knew what we were dealing with, what we should and shouldn’t do. what it effects and how it happens.. once you know what you have to deal with it makes it much easier to just get on with it.
It’s the strangest feeling in those first few days after being told, the only way me and jack could describe it was grief… That sounds awful because we had our little boy in front of us perfect as ever, no condition was ever going to change that, but those first days it’s as if you can’t imagine anything being normal again, its like everything you hope will happen for your baby has gone and from reading on the CF trust website of other peoples experiences this seems to be exactly how other parents feel to. One of the first things the team said to us sat in that room was I promise you he will have a normal life, he is a normal little boy that happens to have cystic fibrosis and this is true. We are aware there will be times when we will be tested with various things, but we will deal with things as and when they arise and not sit there waiting for them to happen, we could sit there and get upset every day but would be the point?
People have said to us in the weeks since finding out ‘ I don’t know how you do it’ ‘ I don’t know how you cope’ – but the truth is you would to if it were your child because you have to. Stanley has Cystic Fibrosis but Cystic Fibrosis is not him.
It has been nearly five weeks now since Stanley’s diagnosis and the hospital appointments, daily medicines and physio have now become a normal part of our routine. we are learning more about his condition everyday and we are so hopeful for his future and everything it holds – how can we not be? he is one of our two beautiful boys who make us smile every day, he is the little brother that Alfie was beyond excited to meet and now adores, he is the missing piece to our puzzle – our boys show us that its possible to love something as much as we love them. and for that our bubble hasn’t burst at all. In fact our bubble is floating along quite nicely.. our little family of four.x
We have started this blog to keep those who have been asking about Stanley up to date with what is going on and for something for us to keep as we learn more about CF, we will try and update as much as we can! and over the next few weeks we will begin to try and raise awareness and raise funds for the CF trust in order for them to keep looking into finding a cure for our little boy and others living with the condition.