Showing posts with label cytomegalovirus. Show all posts
Showing posts with label cytomegalovirus. Show all posts

Tuesday, 14 February 2017

My cCMV baby at nearly 2.

Just like most congenital issues, cytomegalovirus (cCMV) can present itself in many ways.  Each child has a different path ahead of them, different battles to fight and a different future ahead.  When Finn was born we were told that there was a 70% chance that he would survive and that the future would be complicated.  We took home our tiny son after 3 weeks of special care and embarked on a new adventure.

The first six months of his life, we seemed to spend more time in the hospital than at home.  The days were hard, but we knew we were lucky as well.   Finn was born symptomatic with an enlarged liver and spleen, a troubling white blood count and CRP levels (infection marker) through the roof.  His MRI showed abnormalities, but they were not sure how they would affect him.  After three difficult months, Finn started to grow and thrive and by six months he was still small, but getting there.  This month our baby boy will turn 2 and he is a determined, exhausting and beautiful nearly 2 year old.

In some ways you can see the effects of his troubled start - but we can never really be sure whether he would have been a bit later anyway.  At 11 months he started to crawl and at 18 months he took his first steps.  At nearly 2, Finn has come such a long way from the fragile newborn.  He is a chunky toddler who climbs on everything and knows his own mind.  His vocabulary is starting to expand and he has perfected his pronunciation of the key words - cake, milk, biscuits, snack and Cora.  He knows how to communicate far beyond his words and understands us well (other than when we tell him no).

This boy of mine is smart, sociable and ever so happy.  He knows how to charm everyone he meets, he has the biggest smile and he is full of energy.  You would never be able to tell him apart from another child his age, you cannot see the virus he was born with.

At a year old, he was signed off of his pediatrician, but he will continue to have hearing tests every few months for the foreseeable future.  As each test rolls around, I start feeling nervous, worried that things can't be this easy, that my music loving boy who dances to everything may start losing his hearing, but his test last month shows that he is still absolutely fine.  I can't spend my days worrying about what may happen so we are just quietly celebrating every victory and enjoying the typical toddler that he is.

We are so lucky that Finn is thriving, that he is one of the ones so mildly affected by cCMV.  Our journey may not continue as easily as the past year has been, there may be curve balls along the way, but I think this little monkey who has beaten the odds is going to continue to surprise us.  He has taught us the strength we didn't know we had and he brightens our every day.

CMV is a harmless virus unless you catch it for the first time during pregnancy, in which case it can be fatal for your unborn child.  It is passed on through bodily fluids and most commonly from children so if you are pregnant, never share food or drinks with children, kiss them on the forehead rather than the mouth and always wash your hands thoroughly after changing a nappy.
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Saturday, 9 April 2016

On Being Discharged

Finn was born beautiful, at least in my eyes.  He was so much smaller than we were expecting, but each tiny finger, each little toe was just perfect. I fell instantly in love and he slotted into a space in my heart I never knew was empty.

Our little bubble didn't take long to burst and it was discovered very early on that he was very poorly.  I wrote about our early experience and the diagnosis of congenital cytomegalovirus (cCMV), and whilst it was now over one year ago, there are so many parts of our stay in SCBU that are still fresh and vivid in my mind.  I remember where I was sat when they gave us his diagnosis, the doctor that had the horrible job of telling us, the papers they handed over to explain in more detail what was going on, they way they talked about his prognosis.

There was a seventy per cent chance he would survive, but cCMV means more than that, it means that the children that make it lead different lives to their peers.  Disability can take many forms, it can be physical or mental, seen or unseen, often both.  There was such a high chance that he would never reach some milestones and if he did then we shouldn't expect them when other children would.

We were told our perfect baby boy may never lead the life we hoped for him, and that is the hardest thing to hear.  That day we had to leave our expectations at the door, we had to stop planning his future and learn to live for the present.  Every day was a wonder and everything he managed to do would be special, and not taken for granted.

He was discharged but struggled at home, he didn't grow, he didn't attempt to lift his head or move, he was poorly and helpless. Around 11 weeks, after a diagnosis of dairy intolerance, the end of the toxic medication he was on and the start of his growth again, things started to change.  Finn started to show an interest in things, to regain a healthy colour and to feel more like a normal baby boy.

He continued to thrive, amazing us every day and at his six month check with his peadiatrician they were amazed at how well he was doing, as was I.  He was behind his brothers in every sense,  but they were both ahead of the average child at that age.

As the next few months progressed, Finn really became himself.  He started babbling, he learnt to crawl, he started clapping, and blowing kisses and copying you. He tried to join in with his brothers more and his whole body filled out until he was hitting the 50th centile in his little red book.  I knew our baby was thriving, I could see him learning, growing and reaching new milestones constantly, but I still worried about his next check up.

This week we saw his peadiatric consultant for a slightly overdue one year check.  And the result?  We have been discharged.  We no longer need to be seen at the hospital because this little boy of mine, this little miracle is doing everything he should be.  His consultant has no concerns for his health in any area,  

I don't think I will ever relax, the words we were told so early on will always stay in my head, but hearing the consultant tell us that our son truly is a miracle, that he doesn't need to be seen any longer was the best possible outcome and I am thankful every day that he is here, healthy and ours.

This baby boy of mine is something special, he is a reminder not to take things for granted, a lesson in appreciating things for how they are right now and he makes me proud every day.  

cCMV, max and the star, miracle baby

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