Right now it’s 2pm on a Wednesday – and I should be asleep not watching repeats of Made in Chelsea, why you ask? Because my baby has finally fallen asleep. But I know that as soon as I heard all of the cats out of the room (there’s two) lay down, get comfortable and close my eyes…he will wake up. Why? Because babies have unbelievably bad timing, they will be perfectly well behaved in a restaurant right up until your food arrives, or completely asleep and content until you have hooked yourself up to the breastpump, are halfway through pumping and it’s a complete pain in the arse to detach yourself without trying to spill any of your precious hard earned milk (I did not get sore nipples for nothing).
Anyway I thought writing this blog might be some sort of cathartic free therapy for me…because god knows I won’t be able to get it through the NHS.
On the 14th March 2017 my beautiful son was born, Barnaby, or Barney for short, or just Bee when he’s being super cute. My journey through conceiving him and pregnancy was uneventful and relatively straight forward. So it came as a shock when Barney was born that at just 48hours old he was rushed into intensive care. Two long weeks later we were finally allowed to take him home from the hospital. We were elated! Our beautiful baby boy could come home, we could have some semblance of normality in our lives. The only downside was that we would have to take a bag of medical bits and bobs with us, perform a medical treatment on him once a day and come back two days later to find out his diagnosis. Because yes after two of the longest most sleep deprived, stressful weeks of mine and my husband’s lives we still didn’t have a confirmed diagnosis.
Barnaby has Hirschsprung’s disease. A condition that affects the bowels, meaning that baby’s are born with nerve cells missing from parts of their bowels. Because these cells are missing they can’t poo. They have all the right bits and bobs, so they eat fine and the milk makes its way through most of their digestive system fine, it’s just the last bit – the bowel – where there is a problem and it can’t finish the final bit of its journey. This can only be fixed with surgery to remove the section of the bowel which is missing the cells. It’s four months on and Barnaby hasn’t had the surgery yet, and we now do the medical treatment on him twice a day, without it he would get extremely ill very quickly and it’s become a very normal part of our daily routine.
Since we found out about his condition I have been reading what I can find online about it, I think the more informed I am the more I can ensure Barney is getting the best treatment and care. But if I’m honest there is not a lot out there, especially when it comes to stories of people’s personal experience of Hirschsprungs. So I thought I would write this blog of our experiences as a family, so that should someone end up in the same position as us, and they are sitting late at night, unable to sleep, scouring the internet for information which might provide them with some comfort or arm them with some more knowledge they could stumble upon this, and hopefully it would help them out.
On a lighter note – I am a first time mummy, so this blog will also contain some of my musings on motherhood, things I wish I had known and reviews of the numerous baby products I have panic brought at 2am on Amazon in the vain hope they will help him sleep at night.