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Hugely overdue update

I realise it has been MONTHS since I’ve posted, and for the first time in my (admittedly rather short!) blogging history, I actually feel a little guilty and it has been weighing on my mind.

On 28th November 2015, I delivered a gorgeous little boy by caesarean section. Weighing in at 4lb 120zs, he was tiny but perfectly formed.

A week prior to the delivery, growth scans had shown that he was starting to develop late onset intrauterine growth restriction (IUGR). This combined with increasing episodes of reduced foetal movements necessitated his early arrival at 38+5, with caesarean being the safest choice for him. As they consented me for the procedure, the risk “reduced future fertility” was mentioned (apparently, the scar tissue can theoretically make it harder for future embryos to implant). I remember thinking, “well I don’t want that”, but the priority was getting number 1 baby into the world safely, and if he ended up being “one and only”, well then so be it.

Delivering by elective caesarean is a strangely calm experience. Labour, living up to the word, is fraught and stressful for the overwhelming majority. I had a designated time slot for theatre that day, I had visits from various members of staff beforehand, I had my husband sat with me happily chatting to theatre staff, I had a colleague I’d known for a year operating on me, and I had Adele’s “Hello” playing on the radio (rather suitably) the moment my son was brought into the world – entirely pain-free. Bliss.

And so we entered the mad twilight world that comes with newly-found parenthood. We were in a windowless room on a ward with no real sense of day and night, and no mobile phone signal for contact with the outside world. As his birth weight was low, we were being encouraged to wake him every 3 hours at least, for nappy changes and feeds, and as he wasn’t latching well on the breast, I was doing my best to express whilst feeding and giving him formula top-ups. Every 24hrs was devoted to this little man, and the strangest thing was that he didn’t feel like mine! I don’t know what it was, whether it was having a caesarean rather than a natural delivery, and being behind a screen and being pregnant one moment and then having a baby just handed to you the next. Very, very odd considering I’d yearned for the moment for so long.

And  then Day  4 came.

This was the day they detected a heart murmur on a physical exam and arranged a scan of the heart, and then broke the news to us that he had a condition called Tetralogy of Fallot. This is a heart condition that comprises of four defects and requires open heart surgery before 6 months to fix, and then further surgery in later life.

I could not have been more shocked and devastated if somebody had hit me over the head with a sledgehammer. My husband nearly fainted. I held my 4 day old baby in my arms and sobbed. We grieved for weeks. It felt so bittersweet – having waited so long for our child to come along, we feared losing him. We shared the news with family and friends, trying to maintain a stiff upper lip, but fighting back the tears. All the  time whilst trying to look after a newborn which is challenging enough in its own right.

Since then, we have been seen by cardiologists in the Children’s Hospital. They do not think that we are dealing with Fallot’s (good news), but our boy does have a large ventricular septal defect (hole in the heart) along with a mild narrowing of the pulmonary valve. The hole definitely needs surgery in the first few months of life, as it starts to cause irreversible damage to the lungs if left for too long. The valve narrowing should not need any intervention other than perhaps a balloon stretch. And hopefully, following the one big open-heart surgery, he should be a normal little boy and lead a normal life.

The hole in the heart has started to cause symptoms of breathlessness (which we were advised would be the case). His little ribcage sucks in as he breathes, and he breathes fairly quickly, especially whilst he feeds. A fortnight ago, we were started on diuretics to remove fluid from the lungs and to therefore ease the work of breathing. This is used as a temporary measure before operative repair to buy time for the children to put on weight and thereby reduce the operative risk.

Two days after starting the diuretics, he became poorly. He was irritable and refusing to feed, and had such a weak wobbly cry. We spent a week in hospital being treated for kidney failure and dangerously high levels of potassium, caused by a drug overdose. It transpired that the prescription for the diuretics was TEN times that that it should have been, and my precious little boy was essentially poisoned.

Sometimes, I just have to be allowed to have a pity-party. There is only so much adversity a person can take.

But this is followed, later (and often after a sob to my better half) that we should also count our blessings. This time last year, after a failed cycle of IVF, I was convinced we would never be parents. Now, I am completely and utterly in love with something that is 50% me, which goes to show that you should never lose hope. There will be tough times ahead, and it will be hard to always be positive, but as my mother-in-law says, “he is the most perfect little boy – God just dropped a stitch when he made him. A bit of darning, and he’ll be as right as rain”.

6 thoughts on “Hugely overdue update

  1. Oh sweetie, first off – a big congrats!!! I’m sorry to hear he’s having these challenges right off the bat. What a strong little guy, and what strong parents. I bet you don’t feel it sometimes, but know that you are. A close friend of mine has a son with TF, and he’s had multiple surgeries now and has always been amazing at bouncing back. He’s 3 now, just 3 months younger than my eldest, and he’s by no means weaker. Not scared of life. Not shy for challenges. If anything, I think having these challenges to face early on had made him even more resilient. I felt the same surreal feeling about both my babies after they were born, both vaginally, and one to NICU because she was early. It took a good few days to kick in for me too. I still have to pinch myself sometimes! I’d love to connect with you outside wp if you’re up for it – g2the4thpower@gmail.com

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