Surgery 1 - May 20, 2020

 Y'all...being a mom is hard, right? My experience is one of attempting to know the boundaries and lines of being a stepmom and then having a special needs child, but I know all mom's can relate in some way!

I will say that the first 8-9 months of Henry's life, for me, is a blur. I cried A LOT. I grieved so much for what I thought should have been should be, but I did it on the inside and pushed so much down. I did not deal with a lot of my emotions because I was doing what needed to be done and I didn't have time to fall apart. I needed to be there for my son. I needed to help him in whatever ways he needed. 

Gosh, it was, and sometimes still is, such a rollercoaster of emotions. We just didn't get any solid answers from anyone and it seems like no one was really wanting to help. I cannot tell you the ups and downs of all the things we thought might be Henry's challenges. The thoughts of updating our house for wheelchair access, long-term care, etc. And those are all still thoughts, but you go into 'fixing' mode. You start thinking about the rest of his life and what he'll need rather than realize he's still a baby and so much of that is years away. But when you are in that state of mind, you just go everywhere...

Henry was 5 weeks old when he had his first surgery. 5 weeks. That's crazy to me. He had cataract/lens removal surgery at 5 weeks old. And because of the high risk of infection, they only do one eye at a time, so his first surgery was his right eye and about a week or so later, he went in for his left eye. 

Now I know there are parents out there that have so much more going on with the children and I never want anyone reading this thinking I want pity or I'm writing a woe is me blog. No. I am blessed that my child is healthy, as far as I know, and I know that it could be so much worse. My heart goes out to all the parents who truly have sick children that are suffering and hurting in more ways than we know. 

What I want is to be able to express what I've gone through and hopefully touch someone who feels like they can't grieve or feel the way they feel. It's taken me a while and lots of therapy to allow myself to be able to feel the way I feel and not feel guilty or wrong about it. I still have my days, don't get me wrong, but I don't beat myself up as much as I used to. 

Children's hospitals are scary...for the kids who understand what is going on and more so for the parents who can't do anything to truly comfort or help their child. You're leaving then in the hands of others and trusting that the meds works, the surgery works, they don't find anything more than they should, that they and remove it all and 'fix it'. 

I didn't know what to expect that first day. And unfortunately, I had to do it alone because COVID only allowed one person to be there. Which, let me just say, for a children's hospital, was the worst experience. This is your child...to not have the support of your spouse, let alone anyone to be there with you, was very hard. Luckily, I do have an amazing support system who called and texted to get updates throughout the day. 

The surgery was only about an hour and a half, maybe a little longer. They have TV monitors in the waiting room with your child's number that allows you to follow what is going on. You know if they are still in a holding room, in the middle of the procedure, finishing up, or headed to recovery. Doctors are in and out updating parents and letting them know how everything went. 

That first meeting with Dr. Reddy was a relief because he hadn't come out earlier to tell me something was wrong or something worse was going on. He came out to tell me Henry was in recovery and everything went as planned. He was able to remove the entire cataract and lens and his eye, otherwise, looked pretty healthy, which was great! 

I was excited to get back and see him, but y'all he looked so pitiful! He didn't have any issues waking up, but was pretty groggy. Just wanted the snuggles. Still does lol His poor face had a big eye patch and his arm had what they call no-no's. They help keep his IV and everything in place so he doesn't pull anything out. This is the part of every hospital visit that hits me the hardest. It just makes it more real, I guess. You see your child helpless and uncomfortable, not knowing what is going on and there is only so much you can do for them. I'm glad he won't remember any of this. 

Recovery is usually around an hour, at least. He needs to drink a little and be alert enough to go home. I believe this was an early surgery, so we were home by the evening. 

He was still so little and sleeping in the mamaroo at night because he had such bad reflux, so he did pretty good that first night and follow-up the next morning was great. He was put on 5 eye drops and a cream at night. That was tough to keep up with. Especially after his second surgery because each eye had its own set times for certain drops. I legit set alarms in my phone to make sure I put the right drops in the correct eye at the correct time. 

 

Hospital days are long days in general, when he has appointments. Surgery days are even longer. We have to be there 2 hours before the surgery and if they are on time, wait through the surgery and then recovery. Some days we were there for 6-8 hours. To date, Henry's had 8 procedures and been under anesthesia 7 times. And I cannot even count the number of doctor/specialist visits. 

When I think back on these first surgeries, I really was in survival mode. I was going through the motions. I was not in the moments or truly feeling any  true emotions. I was just trying to get through the things to get answers. And we still have no answers. The genetic testing is probably what helped me snap out of the expectation that I was going to wake up from the dream and everything was going to be 'OK'.