Hirschprungs Journey

You’ve most likely heard someone say, “nothing will prepare you for motherhood”. Of course that is true. There’s things that I’m not denying will help, like parenting classes and books. However, there are some parts that are much too raw. Nothing will emotionally prepare you for that moment you first lay eyes on your baby, or lay eyes on yourself when you get that first glimpse of your body in the mirror 😳 Yikes. Nothing will prepare you for the postpartum hormones, how to react to parenting advice you never asked for, sleep deprivation, or even the abundance of anxiety you suddenly have about everything.

Furthermore, there is definitely no mental preparation available for when it’s 48 hours into your childs existence, and your precious baby who was doing so perfectly.. is suddenly not.

Your innocent, beautiful baby that you just carried for 9 months, dreaming and craving to know who they will be. This baby that you finally held in your arms for 2 days, nourished from your body, celebrated, weeped over, and fell in absolute awe of, is now being taken away from you, to a Children’s hospital. And you? Now you’re headed up there in a different vehicle, not knowing.

A little back story: The second day of Charlie’s life, he became a lot less interested in feeding. He started to vomit a green colour, and was still without his first bowel movement. Nurse after nurse continued to say everything was “normal”. Even this green bile? “Yeah that’s normal.” (Why did they all insist on using that word?) As his parents, James and I knew something was off. We were scared, and it was just not being validated by anyone. For quite some time. Finally though, after so many nurses coming in and out, there was one who was extremely attentive, and said “I don’t like what I’m seeing, I’m going to call a paediatrician”. She got the ball rolling, and quickly. Fast forward a little, and the doctor (who is Charlie’s doctor to this day) is sending him to a Children’s Hospital about an hour away. They rolled him away from us to the special care nursery. When we were “allowed” to see him before he was transferred he was attached to so many wires, and part of the front of his head was shaved. They explained calmly, “His head was shaved because we were trying to get an IV into his scalp, but we couldn’t.” I was distraught. They deal with this on a daily basis, but that was my world laying there, so vulnerable and pure.

When we arrived, he was to be in the NICU. That journey was an emotional rollercoaster (Insert no sleep and the hormones following child birth here). I am unbelievably lucky to have the partner I do, as well as the family we both do. It was only two weeks, but I promise you it felt like a whole century. Poor babe had a rough go in the beginning, constantly being poked and prodded from tests and those IV’s (yep, more head shaving) to nose tubes that he enjoyed pulling out and needed to be put back in through his nostril, down his throat. That sucked. We definitely missed out on some serious cuddles, too. Being away from his incubator at any point, whether it was trying to sleep at night or scarfing down a meal, was sickening. Sometimes I’d have breakdowns, whether it was right in front of his bed, or a random one in the parking lot.

Thankfully, Charlie won’t remember any of that. He was in an outstanding hospital, getting all fixed up. Perhaps he was just wondering why the hell he had to exit the womb for all this. He had it just fine floating in there!

Fast forward a little, and we’ll make an extremely long story short. We ended up finding out that our sweet boy has Hirschprungs Disease. His large intestine was missing nerve cells, (ganglion cells) and because of this, he was unable to go “number two” if you will. (Coincidentally, I’ve always despised every word for that act, ie. “poo” 😒. It has now become our life).

Hirschprungs disease is 1 in every 5000 babies (frequently male). There is no cure for this congenital disease, nor will we ever know why Charlie, or any baby thus far, is born with it. I’ve racked my brain thousands of times before. Was it something I ate? Something I said….?

Before we were allowed to take Charlie home, we had to be trained by medical staff how to perform a “rectal irrigation”. Without being too graphic, a rectal irrigation includes inserting sixteen inches worth of a rubber catheter into his rectum, filling it with saline solution, and having his bowel movements come back through the catheter. This was what we performed every 6 hours in order for Charlie to be alive and healthy. Side-note: it didn’t seem to bother him, and he enjoyed spraying daddy with the only weapon he had available at the time. Needless to say, it was a mess! Between this, and myself being hooked up to a breast pump every 2 hours, you can imagine that we didn’t get out much. This was what life consisted of until our brave boy was 2 months old, and had a major, four hour surgery, “The Pull Through”. It was performed by a remarkable surgeon (who essentially invented said procedure) alongside his team. Charlie started to go on his own that very night post-op, and with only a couple bumps in the road since then, he is 4 and a half months old and currently doing great.

This condition will be something that has an affect on Charlie’s life. With a special diet, an active lifestyle, the amazing medical team that Charlie follows up with which includes the very man that saved his life, as well as the skills that we as parents have acquired here on out, I have all the faith in the world regarding his future.

Of course, there is an abundance of details and stories that aren’t included in this blog, as it’s a complicated condition. I am included in an online community of parents (around the world) whose children are living with Hirschprungs. Some babes are living with no diagnosis, some have colostomy bags, extreme amounts of discomfort and chronic complications, a larger area in the intestine affected, the whole intestine affected, etc. I must say that in the grand scheme of things, we are lucky.

Charlie is quite the little spitfire. For a baby his age, he can get right pissed off. He goes from grunting at you when he just doesn’t feel like making eye contact in that moment, to completely ecstatic babbling and laughing. He loves hearing “In the Jungle”, specifically the “a-weema -way” part, trees (and chiming “ouuuu” when he sees one), his jolly jumper and walker, swimming pools, baths, screaming (I mean screaming, he’s got pipes) in excitement, and of course “Little Baby Bum”.

He has blue eyes (so far), a bald spot on the back of his noggin, long feet and toes, Hirschprungs disease, the cutest little chunky leg rolls, and the best smile my heart has ever known. Not one of these sole factors define him, although one has admittedly been shittier than the others. Literally and figuratively. 💩

It’s so wonderful to watch our Charlie boy progress every day. We are at the point in his journey where we are treating him like we would any baby, (although I’m sure I’d give him more kisses). If and when we hit another bump in the road, I know that we’ve got this. (His dad never slows down for speed bumps anyway. Perhaps it was a metaphor all along).

We’ve got a chunky, hilarious, perfect little warrior on our hands.

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10 thoughts on “Hirschprungs Journey

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  1. Melissa I am so proud of you . You have persevered through an emotional rollercoaster and have taken on the role of a new Mom with strength I didn’t know you had . You are my baby and I will love you forever just as you love Charlie . There is no greater gift than the lesson of motherhood . It teaches you to love unconditionally and become soooo strong !
    This is just the beginning my love ❤️ Love Mom ❤️

    Liked by 1 person

  2. You write so well! It was a tough topic to write about,but I enjoyed reading it. I look forward to future blog posts. Hopefully on lighter topics. Thanks for telling your story. You sound like an amazing mum, and Charlie is lucky to have you.

    Liked by 1 person

  3. My goodness melissa! I can’t believe what an amazing mother and writter you have become. From being one of my best friends little annoying sister when you wanted to be. To this incredible woman. The strength you have in you to not only be able to manage through this life you have been handed but to also be such an inspiration to other woman is honestly breathe taking. You should be so proud of yourself. I know i am.

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  4. What an amazing story, you are so strong. Putting it all into real feelings from frustration to appreciation is so beautiful. I am sure other mothers will find this so comforting who are going through similar situations. There is no words to describe the feeling you have when your baby is in any pain and just reading from another mom that understands makes you feel less alone. What a gift you have to be able to express it so well.
    Xo Auntie

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