Really?

Yesterday, through tears, I turned to Jordan and said "I hate my life*". Jordan responded by saying "I hate your life too". That pretty much summed up our afternoon yesterday, after the boys' surgical consult.

I suppose, when you have a surgical consult, you should be prepared that the result at the end of it is surgery. I thought I was prepared, but apparently similar to the CP diagnosis, no matter how prepared you think you are for bad news, you're never prepared enough.





I will start with the good news:

Nolan does not need surgery of any sort!

Asher does not need surgery on his formerly giant umbilical hernia! It has shrunk on its own, from the size of a golf ball or bigger (not exaggerating) to the size of an M&M. Considering that in his early months surgery to repair that thing was a foregone conclusion, that is indeed good news.

In bad news, however, Asher needs surgery. A minimum of two.

I will start by reassuring you that it is not major surgery, thankfully (however, I won't go as far as to call it minor). I will also count my blessings that he never needed surgery on either his brain or his heart - two very real possibilities in his first week or so of life; he has thus far not needed surgery of any sort which is pretty much a miracle in and of itself, given all of his early complications. But now he needs at least two, and no matter how reasonably routine they are, that does not sit well with me.

To allow Asher a bit of modesty, I will only link to the procedure instead of detailing it in my own words. You can read about it here.

So here's how it's going to go down. They will perform one side at a time, hence the two surgeries. Reason being, that although it is only day surgery it is fairly detailed and therefore they want to keep a young one like Asher under anaesthetic for as short of a time as possible. Additionally, they then have a better idea of what they're in for for side two.

The reason that it is a minimum of two surgeries is that the first two may not go well. It may be more difficult to move into place, and therefore they may need to stretch the connected blood vessels as long as possible, let them grow, and then go in again at a later date to stretch them further. Worst case is that they go in the first time and find that the blood vessels aren't long enough to stretch at all. That means that first surgery is a complete bust and they go in again at a later date for a much more complicated surgery that involves cutting vessels and reattaching down lower. We will hope and pray it does not come to that.

So there is the task at hand of the initial two surgeries that we are obviously hoping go off without a hitch. But even if those go well, he lives with an increased risk of testicular cancer and negative consequences to his fertility (things up high where they shouldn't be lead to higher temperatures and potential damage to his swimmers).

Now do you understand why I momentarily hated my life? I'm incredibly tired of complications, and of pretty much all of those complications falling on Asher. By no means do I wish anything bad on Nolan - we are thrilled that things are in tip top shape for him. But how is it fair that two babies, identical babies at that, were both born 14 weeks early, yet one bears the entire brunt of the medical issues?? Not to mention that this is quite common in preemie boys (30%). Yet how come none of the other preemie boys I know (quite a few) have not had this?!

On top of angry and sad, I can't forget to mention the stress. I am stressing about the following, in no particular order:

1. Surgery #1 - the procedure, the recovery, the success, the hospitalization - all of it. There can be complications with any procedure.
2. Surgery #2 - see #1 above.
3. Surgery #3, 4, etc, if 1 and 2 don't go well. Can't let myself think about that right now.
4. The thought of my baby being anaesthetized and intubated. Thankfully, the surgeon doesn't see any reason why his lungs are at more risk than a full term baby. There will be a consult with a pediatric anaesthetist just to be sure, but Asher's chronic lung disease is/was so mild, and he hasn't had any respiratory issues since discharge, so he should be a fine candidate for surgery. Tell that to the mama who is going to completely lose her mind imagining her baby on a ventilator again. Can we say PTSD?
5. The increased cancer risk. Cancer. Seriously. What is it with this family and cancer?
6. The chance that he and his future partner may have issues with fertility. I know reproductive technology has come a long way, and there's adoption and a whole other world of possibilities. But my word, after all he's been through, the thought of him then having trouble conceiving a child hurts my heart. Thankfully, he shouldn't be overly concerned with procreating for at least 25-30 years. For that reason, this worry really should take a back seat, but you know me. It's not going to.
7. The lack of control I feel with scheduling. There's my surgery to consider (still not booked). There's all the important events we have this summer. There's our trip to Mexico for the first half of October. All of this is making me ill, wondering how it's going to sort itself out, and what we do if any surgery(s) coincide with all of these other important things.
8. My surgery + Asher's surgeries = overall too much stress to take

Needless to say, we're pretty frustrated around these parts. The one saving grace is that our happy little guy doesn't have a clue what's up and will hopefully not be overly bothered by any of it. His parents, however, may lose their minds.

Lastly, let me just say that if you are thinking that life could be worse, or that this is nothing compared to what he's already been through, you are absolutely right. 100%. Doesn't mean this doesn't suck though. Leave me to my pity party for today, then things will be back to normal around here. I have a 5th birthday party to host tomorrow after all.

*Jordan and I obviously don't hate our lives. Most days our family is very, very happy. But yesterday was rough.