Tuesday, October 21, 2014

The effects of extreme prematurity continue

To start this post off, I have to say that every day we struggle with one thing or another with Kenny but he is and always will be my little superhero. As I've said in previous posts, when the pediatricians look and tell you what COULD happen with your micro preemie...they don't know themselves...for the most part, they are giving you either an extremely horrible outlook (example: vegetative state, never walk, or even death) or they could give it to you sugar coated (oh, he'll catch up by his actual birthdate, he's developmentally DELAYED...but...doesn't that mean...a delay in development...so, he...should catch up. right? In our case, we have a little of both.
But no one told us it would honestly be THIS hard. I mean, I thought we hit that peak of  "preemie issues" that were given in that initial list of things that are told to you. I guess people forgot to mention what happens to a micro preemie when they are no longer babies, toddles, preschoolers...but when they are actually in kindergarten or first grade!
I'm not going to sugar coat this post...its very difficult. There, I said it. Sometimes I wish we weren't in this whole "special needs/medically fragile" nightmare. I love Kenny deeply and we have this extremely close bond, him and I, but sometimes I wish I could go back in time and erase my life. From when I noticed Nick not looking the right color in the NICU (the day he passed) to today. My whole mommy hood was consumed by mourning, worrying, caring for a sick little guy, worrying, hospital stays, mourning, and medical stuff. Where was the time for me to enjoy the other 6 kids (I'm including Gina)? Now that some of our kids are full blown teenagers, I am feeling really guilty that I wasn't their for them more. What these kids had to experience in losing a brother and seeing how sick and close to death Kenny has come numerous times...and even having a brother that is not typical...It robbed them of their childhood innocents, and I'm sad for them. I am sad for the fact that we cant just go to a store or restaurant as a family, because Kenny has meltdowns. I am sad that we cant just pick up and go hiking in the Metroparks because of Kenny. I am sad that we cant have the life we used to have...and even more so, I am sad that Kenny cant experience what the older kids did when they were younger. I hate that when I still look at pregnant women who "just want their baby out anytime after 34 weeks" that I want to shake the stupidity out of them! I hate that I can never look at twins without thinking that I AM STILL A MOMMY OF TWIN BOYS. I carried them, I know what it was like to have a twin pregnancy (even if it was for only 23 weeks).
Every cold, I pray he doesn't end up in the hospital. Every doctor appointment or weird thing that he does and I choose to google it, could send anyone into a post traumatic stress moment. Every time I have to give him a tube feed, medication, change his poopy diaper or have to experience one of his OCD moments...I am thankful he's here, but I also feel so sad, stressed, angry and exhausted by our daily grind and what we have to deal with...
I hope this makes sense...
Anyhow, back to why I am writing this...
We took Kenny to his eye specialist because of his ROP that he developed when in the NICU. Last year, he was given a prescription for bifocals...this year, the bifocals are coming off. Not because they've helped, but because they haven't. His left eye has been going inwards more and more...and well, nothing is working. We are now going back on wearing a patch over his straight eye (the right one) to try to get his left eye to get stronger. He is still to wear his glasses because his eyesight is so poor though. The doctor believes that he will need surgery again, but not just yet. And it wont help his vision, it will specifically be for cosmetic appearances...you know...so the mean kids don't call him the slow kid with stupid crossed eyes. He is still monitoring his nerve damage to see if it is progressing or staying the same, but with this, I am now holding my breath on how his brain and the cerebellar hypoplasia are doing. I'm waiting for the second shoe to drop...so to speak. Is the arachnoid cyst growing? how much will he be able to learn? Why oh why couldn't those stupid neurologists at Metro and the Cleveland Clinic be wrong?! I so badly want them to be wrong with their prognosis...or their lack thereof! Years ago, they told me that he'd only be 1/2 of his age...developmentally. I hate this because, they are pretty close to being right. So, what else will they be right about? I don't want to know...or never want to experience...EVER but chances are, because of extreme prematurity, we will...plus much more...for instance, I also get to be the receiver of the best hugs, mushiest kisses and have my little boy for just that much longer.

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