Showing posts with label cCMV. Show all posts
Showing posts with label cCMV. Show all posts

Friday, 24 February 2017

Tomorrow you are Two

Every family has different parts that make it whole, every member brings something unique and indispensible and you, Finn, are our smile.  I don't doubt there will be years where you are a moody teenager, that your tantrums will get worse, that you won't always be the way you are now, but right now you are the sunshine in our days, you brighten up even the darkest Monday morning and we couldn't love you more.

One to two has been a busy year, you have learned to walk independently and as with everything, you did it your own way.  It was your brother's birthday and after months of confidently cruising you were still refusing to let go and attempt it alone.  When you finally did, it was with a big audience, an even bigger grin on your face and you walked right out the room like you had been doing it for ages.  It took you a little longer than your brothers, but we didn't doubt you would get there.


This year you learned to talk and I have found it hard not to compare your progress to your brothers.  You are unique and you are communicating in your own way.  Your language seems to have started snowballing since Christmas and every day you are learning new words.  There are still plenty that I 
don't understand yet, but you understand me (other than when I say no or stop).

At nearly 2 you are strong willed and defiant.  You have refused to just slot in like I was told third babies do - we know you are around! You are interested in everything, put off by nothing and everything is a climbing frame.  You are a little whirlwind at times, but you can also sit and play beautifully for ages.  You are desperate to be big like your brothers but you also want to be a baby like your sister.  You adore her, she is your favourite person and I love watching the two of you interact.  


I still think of you as a baby but from the outside you are starting to look less like one.  Those wispy baby curls that framed your face have gone, you race confidently into new situations, you make your choices known, you are growing and changing.  You still insist on your 'daddit' (dummy) to fall asleep though, and you lay with your arms tucked under you and your bum in the air as only babies and small children can. 

One was the age you became a big brother, just two days after you turned 16 months.  You loved your sister immediately and you two have a special bond.  You watch how close your big brothers are and you get impatient to have the same fun with Cora - I think you two are going to cause so much mischief once she is really on the move!

I am constantly reminded of quite how far you have come, the odds you have beaten and the mountains that you are still desperate to move.  You will always be a little miracle to us.


Happy Birthday baby boy, Happy Birthday Finn.  You are loved more than I ever knew you could be
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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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Wednesday, 5 October 2016

Dairy Intolerance and Starting the Milk Ladder

I haven't written much about Finn's diet - I am so useless in the kitchen that sharing recipes isn't going to be popular (I can make a great piece of toast though), but Finn has been weaned on a dairy and egg free diet.  His intolerance to dairy was diagnosed at around 10 weeks old (I wrote about his CMPI diagnosis here) and his intolerance to egg was evident when we started weaning.  It took us a long time to adjust to the changes and once I finally felt that we were sorted with the dairy free cooking, it seemed to be time to start the milk ladder!

cmpi, milk ladder, dairy intolerance, ted wears organic, the mummy adventure

If you didn't already know, the milk ladder is a step by step way to introduce dairy to a child or adult that is intolerant to cows milk protein.  We were advised that we could start at any point from 12 months but due to being heavily pregnant and having a newborn, we decided to wait a little longer until we were all a bit more settled before we began.  Finn is now 19 months and whilst his verbal communication is still very limited, we understand what we are looking for and recognise the signs of his intolerance - generally that he is very upset and clearly in pain all night after eating something he shouldn't.

We have made many changes as a family to accomodate his intolerances and we now only have dairy free spread in the house (Pure soya spread and Violife creamy original cheese spread) and all three boys love the Violife dairy free cheese.  We eat certain meals like lasagne less often as making them dairy free was a bit more akward (completely possible but we are lazy packet sauce type people).  We eat fajitas and casseroles more as they are naturally dairy free and we found the places that sell dairy free garlic bread (Asda value frozen is great and surprisingly Pizza Hut!).  Picnics contain pom bears and party rings and Finn's formula milk is available for him on prescription until he is two years old.


This week we took the first step on the ladder though.  Malted milk biscuits are the first stage as they contain milk powder and we gave Finn half a biscuit on the first day, one biscuit on the second day and two on the third day.   It has been roughly a week now and we are still giving the biscuits every day.  We haven't noticed any issues which means stage one is a success!  The next step is digestive biscuits and they are on my shopping list for tomorrow.  Hopefully we will start being able to introduce more dairy into our family meals soon, but we are going to take it slowly making sure there are no issues before we move on to the next stage.  The recommendations as to the amount you can start with vary but as Finn's is an intolerance rather than allergy we decided to go straight for the half biscuit.

Having two big brothers who are still little enough to leave crumbs everywhere, I am hoping that this means I can stop obsessively hoovering the living room floor when they have cheese with their dinners and watching Finn like a hawk at playgroups when they bring out snack time.  I don't think we are going to attempt egg again until he turns two as he definitely still reacted to it at 18 months when he accidentally ate a couple of pieces of egg fried rice.  

I will update more on our Milk Ladder journey as we progress.


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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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Wednesday, 24 February 2016

Tomorrow You are One

I always knew this was going to be an emotional post to write, and as I sat in tears shortly after you were born not knowing whether we would see this day and whether everything I hoped for you would come true, this day was just a distant wish.  Your birth was speedy and empowering, you were so tiny and so perfect and I felt complete as I held you in my arms as the sun rose on your first day.  I never expected our world to come crumbling down so soon after and as they wheeled you away from me a few hours later, I felt lost, helpless and terrified.

We were told you were born with a virus that would affect you for the rest of your life.  We were warned you would not grow up like your brothers, that the possibilities of your outcome were so wide that it was hard to speculate, but that there were things you may never do and milestones you may never reach.  We left hospital when you were three weeks old with a tiny baby who had his whole life ahead of him, whatever that may mean.

You didn't grow, you didn't try and when we got readmitted to hospital you were still as tiny and weak as a newborn.  Everything was going wrong, every certainty I had about the way I would parent you was being cruelly taken away from us and I struggled to remain positive when we had no idea what was going on.  

We reached a turning point though, about 4 months in when you rolled for the very first time.  I wasn't expecting it, I had learnt by then not to expect anything, but to take each day for what it was, to enjoy you exactly as you are and to find any progress so much more amazing than with the others.  Suddenly you were growing and developing and thriving in ways we hadn't even hoped for and you were smiley and sweet and still perfect.


This time last year I had no idea you would be making an appearance in just a few short hours and today I feel like a different person and a different parent to the one I was then.  Tomorrow you will wake up as a one year old, a beautiful, chunky, happy one year old.  You are exceeding every expectation we ever had and whilst we know things could change, I am continuing to appreciate every day and every milestone for what it is - a wonder.

Today you are crawling, pulling yourself up to standing and even taking a few tentative steps as you grip on tight to furniture or fingers.  You are babbling away, telling us all about your day, even if we don't understand quite what you have to say yet.  Once you finally got the hang of food, you started eating well and now you love feeding yourself, especially if you can find food on the floor.  You can clap and give us a hi 5, you can play and smile and laugh, you can blow kisses and you can entertain us all.  Your brothers adore you and Dylan proclaims you his best friend every day.  You love them right back, suddenly desperate to join in their games, to sit with them to watch tv, to share their snacks.  


We had a big party at the weekend for you and Archie and tomorrow we are not up to much.  Both the bloke and I have to work and Dylan is at school but it will be a special day regardless as it marks a year since you entered our world. 

This year has taught me patience, how to accept that some things are beyond my control, how to make a bottle, that sometimes we have to practice baby led parenting, even if it goes against what we know.  I have learned to juggle three under fours who all have such different and complex needs, I have met pretty much every pediatric member of staff at our local hospital and I have become an expert in a virus I had never heard of this time last year.  I have learned that no matter how many babies you have, every moment is precious, every milestone is an amazing achievement and that with the right friends and family around you, nothing is too big to get through. 


Tomorrow you are one and I owe most of this to you.  Your beautiful smile with those two little bottom teeth will be what wakes me up in the morning and your cuddles will inevitably be the start of my day.  You are perfect to us, you are thriving and you are a ray of sunshine in our everyday.

This has been a tough year and you are our miracle.  Happy Birthday baby boy, Happy Birthday Finn.  You are loved more than I ever knew you could be

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Wednesday, 24 June 2015

Finn and I

It began with a struggle, coming to terms with a third baby growing inside me, a baby so so wanted, but so so unplanned as well.  The bond wasn't instant, I felt tiredness more than love, and it took a while for it to sink in that this was a third little person growing inside of me.


I worried throughout the pregnancy that I hadn't spent enough time enjoying the moment, but that is what happens when you have two small toddlers running around.  With my first, I would relax in the bath every evening, telling my growing bump about my day, singing songs that he heard so often they calmed him instantly as a newborn and getting to know the tiny soul.  With Finn, my baths at the end of the day were to calm me down and help me sleep, he heard my voice and my songs as I sung to his brothers, but little attention was his own.


I found out at twenty weeks that I was growing a third little boy, and I started to plan for him,  thinking  of names, choosing clothes and things for his room, but still I didn't feel as connected as I had the first time.


When labour began, I went into my own little zone, suddenly it was just me and him, and everything seemed so real.  I was excited, exhausted, in pain and in love all at the same time.  It wasn't long until I was holding this child in my arms, so much smaller and more fragile than I remember the other boys being, so perfect and beautiful, a surprise that we had been anticipating for months.  I loved him from the beginning, I always had, but now it was different, he was so real and I was smitten.


I acted the same way all new parents do, counting those tiny digits, watching his face screw up to scream and relax as he was comforted.  I didn't want to let go, to put him down, he snuggled into me and I stayed awake as he slept on my chest, the bloke snoring away next to us after a sleepless night.  I counted my blessings, longing to see my other babies, to have our family complete and  together, to see the wonder in their little faces, to see their reactions.


We had to stay in overnight, and as much as I was desperate to take my baby home, I looked at it as time to bond, without anyone else to disrupt us.  We had a private room and whilst conditions were not ideal as Finn had to stay in the billibag to help with his jaundice it was just us two.  The night was difficult, with my baby boy so unsettled away from my side and in the morning he was taken to SCBU to find out what was wrong.  I was still a patient in the maternity ward, which meant he was wheeled away by the doctor as I waited to be discharged so I could follow him.


They took my baby away, he was only hours old and I was devastated - that I couldn't comfort him, that something was wrong, that he wasn't by my side.  We were told that it wasn't normal, that his liver was struggling and that he would need to undergo numerous tests to get to the bottom of it.


It was then that I realised how fierce my love for him was.  How intense and all consuming it was, there was nothing in the world but my baby boy and I.  I didn't see other mums as I walked the corridors to find him, I didn't hear any of the other newborn cries, I knew they weren't my newborn and I needed to be with him.


I barely left his side for the 19 days we spent in special care.  The unit was not set up for parents to stay, but I made it clear that I wasn't leaving and they adapted.  I love my other children, but my baby was the one that needed me most right then and I needed him right back.  Every moment I could hold him, I did, every piece of care I was allowed, I took, until he and I were living alone together, seeing the nurses only when he needed his drugs.  It was intense, we were alone in one room all day and night, we had visitors, but it was just us, no long walks, social groups, distractions, just us.  


Even now, I sometimes feel like it is just Finn and I, despite only having a few hours on a Tuesday when his big brothers are at nursery and it really is just us.  We went through so much in those early hours, in those first weeks and I feel a love so intense for him, that I can't comprehend how I ever doubted it.  Every night when he wakes up for a feed, I feel tired, exhausted even, resentful sometimes and then at peace, as we snuggle up together. I see his angry, hungry face settle into a contentment and I know that even though he is drinking from a bottle rather than a breast, this is something only I can do for him, only I can comfort him like a mother, wake up at the slightest noise, because we are still so in tune with each other, and stay up even once he has fallen back asleep just to watch his chest rise and fall as I know how fast this period of his life will go.


Finn and I have something special, a mother and son bond, what we have been through these past 4 months, we have been through together.  I love him no more and no less than I do Dylan and Archie, but differently.  He is our last, my baby and him and I, well we are snuggled up as I type this and I just don't want to put him down.


cCMV, CMV baby, mother and son, parent blogger, mummy blogger, CMV virus baby

Did you know I am a finalist in the MAD awards in the best pregnancy category?  I loved recording my pregnancy with Finn and if you can spare 30 seconds I would love for you to vote for The Mummy Adventure - you can do it here
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Wednesday, 10 June 2015

Our Feeding Journey

It is fair to say that Finn's first three months have been rocky.  After being born with a virus, he has undergone all sorts of tests and procedures, and we have found a second home in the hospital. We seem to finally be coming out the other side of the newborn blur though, and I have discovered that we are going to have to do things Finn's way rather than mine.

I knew way before Finn was born that I wanted to breastfeed.  I had fed both of his brothers, for 9 months and 16 months and it was what felt natural to me.  I had enjoyed it, both my children were born already seeming to know how and it was certainly easy, especially once you got past those first few weeks.  Finn latched on well after birth, and we had 48 hours of breastfeeding on demand.

After his admission to special care, the testing started, and to rule out a rare disease called galactosaemia, we were told Finn must stop breastfeeding, and instead have a soya based formula until we had the all clear.  I was so determined that we should do everything we could to establish breastfeeding, that the nurses and I decided he would be cup fed, to avoid the nipple confusion of a bottle, and I was set up with an electric pump and a space in the freezer.  The results took far longer to come back than we expected and it wasn't until 8 days later that I was finally allowed to breastfeed again.  Finn was 10 days old, the freezer was so full after 8 days of expressing every 3 hours and I didn't realise how hard it would be to teach a baby to breastfeed again.

We struggled, and he was topped up via his nasogastric tube when he didn't seem to be taking enough, but after 12 hours a lovely nurse told me he could come into my room, and we would stop topping him up for 24 hours to give him a chance to really 'get it'.  He seemed to get back into feeding, and I prioritised getting milk into him over anything else.  I ended up very sore, but after 3 days and lots of work his latch started to right itself and he was putting on weight.

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Monday, 1 June 2015

My cCMV Baby

On February 25th I gave birth to a baby boy.  He was perfect.  His bright dark eyes immediately found me, his lips formed a sweet pout and knew they wanted milk before I knew I wanted to feed him and his tiny nose connected him to his brothers straight away.  His feet were soft and smooth having never born his weight and his little hands curled into fists in anger at entering a cold and scary world.


Our baby boy was born with a virus called Congenital Cytomegalovirus or cCMV, a virus so common yet so rare.  At 12 hours old he was found to be jaundiced and at 24 hours old he was admitted to SCBU.  His blood results showed us he was fighting something massive, and he had every possible to test to try and determine what.
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