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


  1. Oh Bex he is a little miracle indeed. What awesomely wonderful news and a massive weight off your shoulders! Yay yippee and yay!!

  2. Bex this is the most wonderful post to read! He's one amazing little boy xx

  3. I'm so happy for you that everything has worked out well. Finn really is adorable and is a very special little boy x

  4. What a lovely post! You have been through so much and it is wonderful to hear that he has been discharged and that he is doing so well. xxx

  5. Oh this is a joy to hear. So fabulous. He is so so adorable and now with this news wow! I know the undercurrent of worry is there but what a wondrous special miracle. And your gorgeous girlie on the way :-) xxxxxxxxxxxxxxxx


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