Heart Week 2015 || To the Mammi who's just found out her Baby has a CHD

I might be jumping on the bandwagon here; but I saw this post on Facebook from The Mighty and I couldn't help myself. I think that it's because so much has happened since that fateful day in April 2013 when our lives were changed cataclysmically.

I remember trying to think logically when we came back from our 20 week scan and telling myself "But blood is being pumped around her body, every part of her has developed and grown and she is still alive now - it can't be that bad!" I had no idea how a fetal heart worked back then...little did I know about the arterial duct that was my baby's lifeline! Now...well now; I could probably label every valve, artery, ventricle and atrium on a diagram of the human heart!

But if I could go back to that day, what would I tell myself about the journey we were about to embark on?

To the Mammi who's just found out her Baby has a CHD,
You haven't done anything "wrong" and there is nothing that you could have done differently to avoid this happening to your unborn baby. In fact, I don't think you'll ever get to know why this happened to your baby; you'll meet countless other parents over your child's lifetime who will wonder the same thing from time to time - and do you know what? It's OK to ask "Why me, why us, why our baby?" just don't let yourself dwell on that too much.

I know that right now the thought that scares you the most is Surgery; handing over your baby to people you don't know and have to put complete trust in them that they'll take care of your baby - I promise you they will. But it won't always be plain sailing when she comes back up to Intensive care; don't think that once you've had that call to say she's back that your worry is over because I'm afraid
it's only just the beginning. Some days it will seem like you've taken two steps forward only to take six steps back; but that will be because she wasn't ready to take those steps - she was being pushed a bit too hard and she wants to remind you that she's in charge of her own recovery, she will go at her own pace. But when she is ready - she will amaze you, she will come on in leaps and bounds...some week's you won't believe the she's the same baby that you were crying in despair over the week before. 

The constant beeping from the monitors will drive you crazy; when your baby is just out of theatre their parameters will be set so tightly that they alarm more than usual. But the alarms aren't for you - the alarms are for the nurses; to alert them that something is changing and they need to be more vigilant, so they can start planning ahead and working out how best to treat your baby and what med's they need to tweak, so they can give the Consultant a heads up that they might need to come to your baby's bed space before they go to visit a patient on another side of the ward. But if it's too much for you then don't feel bad if you can only cope with popping in to see your baby for a few minutes before escaping to the parents room again - Intensive care isn't a normal environment and none of the nurses (or other parents for that matter) will judge you if it's a bit much for you.

The instinct to fight for and protect your baby will become all the more prevalent; you will learn your baby's base line for everything, you will know how much of each drug she should have and you'll watch as each nurse draws up those meds to make sure they've done it properly. If a new Consultant comes along and suggests a new treatment plan, you'll question them on why they're considering these changes and scrutinize all of their ideas. This is OK - you're her Mammi and you'd rather prepare the Spanish Inquisition for a team of Cardiologists than watch your daughter deteriorate because someone had a new idea. But remember to listen - take on board everything they suggest, they only want what's best for your baby too.

Talk to the parents of other Babies in the ward as they will be a massive support to you, just as you can be to them; no one will understand your fears better than them. Never underestimate how valuable hearing your experience might be to someone in a similar position; and hearing someone else's good news will give you hope and strength to fight another day for your baby.

Every achievement, every milestone your baby reaches will leave you bursting with pride; like every time you pop her nappy on a scale and it's one of the heaviest she's ever had. And the first time she takes her feed orally will be your proudest achievement (even if it is only 10mls) Though you will jump at the chance to be signed off on NG tube feeding, 10mls orally isn't enough to sustain her I'm afraid - but it is an amazing start. But the day they say you can take her home; nothing can compare - no money in the world could buy that level of happiness. Yes it will be scary not having a nurse on duty 24/7, or that trusty ole monitor displaying her Heart Rate, Blood pressure or Oxygen saturation levels; but come off it - if you be honest with yourself you know damn well that you'll be able to tell just by looking at your baby if she isn't well. You would have spent so long with her that you will spot the signs quicker than any monitor can beep.

Finally; just take each day as it comes. Though there will be occasions where you can only cope by taking each hour at a time. Don't try to be strong for everyone either, look after yourself and your baby; if the Psychologist visits and ask's if you'd like to talk - please accept their offer, there is a reason why they're there.

It's a hell of a journey you are about to embark on - but I promise it's worth it.


This is the image from our 20 week scan


I am hoping that my fellow Heart Mammi's would like to take part and so I tag

The purpose of our blog is to raise awareness for Congenital Heart Defects and offer hope to families who are about to begin their journey. If it can happen to us then it can happen to anyone. Please consider sharing this post using one (or more) of the social media icons at the bottom of this post - it might reach someone very much in need. Thank you xx

Little Hearts Big Love

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