One of the complications of X's delivery and prematurity is a hernia...and it's a doozy of one too. It's very large and....well, here I'll show you:
This is what is looks like from the inside....
And THIS is what it looks like on the outside...
Unbelievably, this was taken on a day when it was "smaller". Yeah...not good.
There are many theories about what kind of hernia this is exactly. We've heard it's diaphragmatic, maybe abdominal..there are lots of guesses. It doesn't really fit into ANY category. What I can tell you is that X has had this since he was just a few days old. For basically his entire life, he's had to try to do everything from eating to rolling to sleeping and anything else babies do with this huge ball on his side. It's been a rough journey to say the VERY least.
The complications from this hernia and the pressures it causes range from reflux symptoms to now the beginnings of scoliosis. We've been to see multiple surgeons and each time we were more or less dismissed. This did NOT make this Mama a happy lady.
You see, what I couldn't seem to get the surgeons to understand was how much this one thing was negatively impacting X's life. He can't drink more than 4 ounces of his bottle at any one time. He has reflux that he didn't have before this got so large. He struggles with GI problems from the hernia compressing his GI tract. And now his spine is starting to be affected as well. While the rest of the issues aren't great, they're manageable with round the clock care and a big team working together to make sure X's needs were being met. Then we found out that his SPINE was being affected. Frankly, that's not a side effect we were willing to put X through.
So, we went back to the surgeon a few days ago. We went very prepared this time. We had letters from as many other members of X's care team as we could possibly manage. In these, they each explained how this hernia was impacting their specific realm of care for X. They talked about their observations about how it was negatively impacting his quality of life. They talked about their concerns with it not being addressed sooner than later. We went prepared with examples of how each and every symptom caused by this hernia had worsened since our last visit. Finally, we talked to X's GI doctor who PERSONALLY went to talk to the surgeon face to face and they agreed it was absolutely time to deal with this.
So in a couple of weeks, X will go in for surgery to finally repair this hernia. Yes, the dreaded S word.
The downside is that this will be a big surgery. It can't be done laparoscopically with the size and placement of the hernia. There's too much risk of puncturing something that shouldn't be punctured. Instead, X will have to have the repair done through a large incision on his abdomen. It'll reach from about his belly button to his back. It'll be large. It'll hurt. It'll leave a pretty big scar. It means several days of being in the hospital to control pain and get him back on track.
If I said I'm looking forward to this, I'd be lying. I'm absolutely not looking forward to the surgery part. It's risky but necessary. I know he needs this...but just like every other time we've had to make a hard choice or agree to put him through a hard procedure, I worry. He's my baby. He's already had to fight so hard in his short life and sometimes I really dread putting him through more. Despite my own fears and worries, I know in my heart of hearts this is the right decision for X. It will improve his overall quality of life. If it was purely a cosmetic procedure, I wouldn't even consider it. X is perfect exactly how he is. But, as I watch X struggle with so many complications that make his day to day living so HARD for him - all of which are a direct result of the hernia - I'm reassured this is right. This needs to happen. I AM looking forward to the positive impact this will ultimately have for X...and I'll be right there with him through it all.
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