Friday, January 20, 2012

Erin & Hudson

Believe it or not, I'm not the only mum with a CF story to tell! Everyone has a different experience, here is Erin's.

Its quite hard for a mum to write about the happenings of their child coming into the world at the best of time, but I'll do my utmost to put it down without too much sop sop (not sure who I am kidding here)
On the 3-3-2011 we welcomed our Hudson Trevor Kingsley into the world. Fourth time was another 'blissful' labour, no complications and just as smooth and kind to me as the other 3 were. Hudson was tired pretty much from the time he was born til days after he was diagnosed. His body temperature was also quite cool and getting him to feed seemed impossible and he was almost 12 hours old before having a feed from me. But of course at this stage it was just put down to how hard of a job it was for the lil guy to come into the world.

I can actually recall quite a few times during my pregnancy that I had some inner feelings that all would not be as well with baby number four and even that it wouldn't be something we would pick up on right away. But of course I had him and those thoughts were forgotten until my best friend reminded me that I had those intuitive thoughts. A few days after being home the midwife came to do the routine heel prick test. I remember how lovely she was, complementing me on my lovely children and the great family I had made and even took a family photo for us just before she left. Before leaving her famous words were 'no doubt you will hear nothing from me but as per the other children, you only will if there is something wrong' Again another lil pang in my tummy that I was not as confident in hearing nothing like I was with my other babies. In days that thought was again gone and didn't think of it again. 

Hudson was a wonderful baby, he slept like I could not believe, only waking for a lil feed and for a change and really was never awake for long at all. Days past and this started making me feel like it was not OK that he like this, not to mention the frequent poo's he was having. No kidding I could change 1 nappy, not even get him back to the lounge and he would have gone again (number two's I mean) I can remember my cousin Donna being over for a visit and I expressed to her that this happened often and I didn't feel like it was normal. After not hearing from the local maternal health nurse to see when they would be doing his home visits and setting him up appointments, I took it upon myself to go there, knock on the door and insist they weighed him and spoke of his routine and frequent bowel movement but was told "don't complain, you're lucky, he is just a really good baby". That gave me no mind relief what so ever. Then she weighed Hudson and just as I had known, the lil guy was shrinking, it wasn't in my overtired (how could I be he slept all the time) mind. From there is was recommended I would need to wake him every 3 hours and give him a good feed and do whatever I needed to get him to wake up properly. I could strip him down to his nappy and he wouldn't stir but continued to do as recommended for the next almost 2 weeks and just began to enjoy him and try and not worry about why he was like that.

One gorgeous sunny morning (I know it sounds corny but it was, that kind of weather always makes me feel at my best) I had dropped Lachy off at school, came home and was in the lounge with my 2 girls and Hudson just admiring them loving him and enjoying him. I was texting Steve back and forth, just things like how much I love him and thank you for giving me another perfect child, how lucky we are and how happy I am while snapping away with the camera and Hudson and the girls. Within minutes of this unreal day that all mum's love to have and live for, after all its the reason we have them isn't it? My mood, life world had turned from the happiest to well, the worst I have ever felt in my life. The telephone rang but as I was in the head space of the moments I was sharing with Steve. I didn't really take note of where the lady who was on the other end said she was calling from. I snapped out of it when she asked how Hudson was, I assumed it was the health center nurse calling to let me know when I could bring him back in. So I was in my la la land saying, 'Oh he is fabulous, actually he is the perfect baby, he sleeps well feeds well and seems very content (god only knows how the lady on the other end must have been feeling, something like 'this poor girl is going on and on about how fantastic things are with her baby and I have to tell her this terrible news). Eventually I stopped bragging about my perfect baby and she said. "Erin I'm calling about Hudson's birth screen test."  (My heart was over pretty much at this point) One of the things we test for is Cystic Fibrosis and its come back that Hudson has tested positive. I'm crying beyond control at this point. The house starts closing in around me and my head feels the pressure like its been put in a vice and someone keeps tightening it. The lady is still talking saying something like 'call who you need to call, I'll give you an hour before I call back to let you know what you need to do". I don't recall hanging up the phone, I can remember that I was trying to call Steve but I could not work the phone, I must have got a text through to him and my father in law. Poppy had called me back and I was crying to him letting him know I needed them (him and nanny, Steve's parents) to come down to be with the girls cos something is wrong with my baby. Before I knew it Steve was inside the house home from work, that is how I know I must have managed a text. he himself was very confused what could be so so wrong when only minutes ago he was receiving texts from me about how happy I was and all of those good things and I told him, Our baby has Cystic Fibrosis and we cried and we cried. It's only as I write this I am now wondering how our girls must have been feeling [:(] )

The hospital called back and we were told we needed to take Hudson in right away, I don't remember the trip to the hospital at all. First we met the genetic counsellor who explained how it came about how Hudson has CF and a little bit about what it actually is. I will say right now, we too were not at all familiar with what it was and I had actually mistaken it for CP (Cerebral Palsy) because when they called I remember taking him out of his bouncer and making him move his limbs around and looking at his head and screaming no he doesn't have it he is normal he is completely normal! I honestly thought we would get to the hospital and they would soon learn they had given us someone elses test results and mixed them up under Hudson's name. But it wasn't true. We were taken across to the hospital to meet what would and has now become, our CF team, our CF Monash family. we were taken to a room and introduced to more people than I can remember, I didn't really look at anyone, just their feet, there were so many different pairs of shoes. I held Hudson, he clung to me like a lil koala bear and he slept, as he always did. I can remember thinking. Who are all you people? You have no right to bring us in hear and turn my families world inside out and upside down with one phone call. T he sound of them all rusting through papers and taking notes was so so loud I wanted to scream at them, and for the lady that just constantly spoke and spoke and kept giving us all this information about how we would have to manage our lives I just wanted her to stop talking, I wanted her to shut up, in my mind I swore to god if another person walked in those doors and said, you will now meet so so and an they will be your such and such I was going to storm out of there with my baby and never go back. But I knew I couldn't, I was now at the mental point of knowing that the information all of these people had meant life and death for my son, these people would be the people who will forever help us keep him alive. These people were not to blame, they kept telling us 'its not your fault, there is no way you could have known' and that was just my problem. No one stuffed up majorly while I was pregnant, no midwife stuffed up while I was in labour, and we didn't stuff up after taking him home. There was no one available to point the finger at and yell and scream at to get my hurt and anger out on. No one. Because Hudson having CF, is no ones fault. Its a genetic disease that Steve and I had no idea we were carriers of to know that it was a possibility that one day we may have a child that had 1 in 4 chances of having CF. So our dear Team Hudson supporters, that is how Team Hudson started. After much sorrow and sadness (there still is and no doubt always will be) we knew our energy had to be used for the great of good and top make change for our dear lil Hudson and all lil CF sufferers out there. I told Steve, there is a reason Hudson has CF and as vain as this sounds, I believe with my whole heart its in his journey to have it, because he is so loved and instantly liked by all that cross his path that people wont be able to resist want to help fight the CF fight with and for him. because of how loved he is I know that he will make so much change for the greater good for this horrible disease that til this day, still takes way to many precious children from their loved ones. Because of Hudson I believe so much good will be done. Even if its just awareness of the disease, I cant ask for more than that, cos as I already admitted, until Hudson was diagnosed, we had no idea what CF was. It is the mission of Team Hudson to spread awareness of CF to anyone and everyone we can. Cos lets be honest, no one put money into something they are not educated on so I know that education will equal much more funds being raised and that will lead to our CFers having a longer easier managed life that what they do as it stands. I'm his Mummy, I'm his voice and that people, is not my job but my dream and my goal. Thank you all for helping us achieve it.

Bless you all [♥] Hudson's Mummy Erin. ~BREATHE~


Jacqueline said...

Hi Erin and Danni, have just read your lovely post. My hubby is a twin and his brother and wife have a daughter with CF, neither new they were carriers until Jess tested positive. She is now 13 and doing really well. Jess now has 5 year old twin brother and sister, 1 is a carrier.
Peter's cousin also has twin girls, 1 has CF and 1 not, they are now 4.
I was tested when Peter & I decided to have children (we already new Peter was a carrier, being an identical twin), I came back negative. We have 3 noisy boys now, after the youngest Heath was born, I got the call from Melbourne to say CF had shown up in his heel prick test, get your husband to come home and I will call you back in 30 mins - we were distraught as we new all ablout CF, but knew he must only be a carrier - but we were scared. An appointment had been sceduled for the next day in Melb, we are 3 hours away, and it was an agonising night and drive in the morning. Half way home after the test, we got the call to say he was a carrier.
Thanks for sharing your story's and making people aware of CF.
Take Care

beck said...

it breaks my heart to read this ... having a friend with cf I can only imagine what her family went through .. I will keep spreading awareness until a cure is found <3