I can't really put into words the amount of responsibility, stress, and worry that was thrown on my shoulders (and my husbands!) when we found out we were having a heart baby. I love Andrew more than anything in this world and would never change him for anything (unless I could completely take this nasty CHD away, I would!) I wont lie, it terrifies me sometimes that I am the one responsible to keep him thriving every day... aka alive. He gets his medications twice a day, feeds every three hours, and anytime he throws up and gets strangled and all that other stuff it's me every one runs to make sure he's okay. Which God knew I could do it and that's why we were blessed with this miracle baby! :) I know I can do it because I'm doing it, it's just a lot of work some days!
It's hard enough with a regular newborn, but throwing in the...does he look blue today? Is he pinking up enough after his bath or crying spells? THEN the oh no he's crying, I've got to get him calmed down asap so he doesn't turn blue/purple too long or get too worked up. :( Does he feel warm or running a fever? Has he thrown up twice today? Is he breathing too hard or show labored breathing signs? Do I have his NG tube placement right or has it floated around to his lungs? (Man, I really dont want fluid to build up around his lungs again!) Man, he threw up after his meds, I hope his aspirin stayed in his system to keep the shunt clot free. Oh no he's gagging again is it reflux or is he about to get strangled and possibly aspirate his feeds? And WAITING for that one poop a day like it's Christmas because he was up crying all night long trying to push and grunting and he literally just wears himself out and falls asleep trying to go, shortly wakened to try again. With all of that I'm up every 2 hours (no matter what I'm doing) around the clock 24/7 tending to Andrew's needs and way to often in between. He definitely keeps me on my toes. Of course I may be over paranoid, but one mess up on my part and he can be heading into trouble fast. :( Every day I wake up I'm super ecstatic that we're one day closer to his next surgery. After that one I know we will be no where near out of the woods yet, but the "set up" (as his surgeon calls it) will be more stable and out of this critical setup we're in now. Hence why they wait so long between the second and third surgery, because it's a lot better setup on their little bodies and blood flow/circulation etc.
I can't help but wonder if the other heart families and moms feel as overwhelmed as I do some days? I swear if it wasn't for God giving me strength some days I would have gone crazy by now. :/ I don't mean to complain because I know some sweet little babies and children that lost their battle all too soon to HLHS and other CHD's and their parents would love to have those worries back, but I am literally on pins and needles every day, even at night time. There's no "off switch". It's pitch dark in our room at night and any little sound or reflux gag, or throw up spell it sends me into a mini panic and then I'm sitting up with him for half an hour or more making sure he's okay. :( Everyone and other heart mommas say it gets easier and I'm really hoping and praying for that point, because right now I feel like I'm constantly going, constantly worrying, and I dont know if that will ever really go away...
He is having these three major open heart surgeries in his life, but it doesn't really "fix" the problem. He has and always will have half a heart. It's just being modified so that he can live. That's hard for me to swallow sometimes. (Sorry for my rant, I'm just having a rough past few days and wish more than anything I could take this from him.) CHD is a horrible thing, and I wish there was more I could do for those around us who suffer from it. These kids are truly the biggest heroes and fighters I've ever seen in my life. CHD has forever changed mine and my family's lives. My older two daughters understand that something is majorly wrong with their brother and my oldest especially has been on pins and needles probably just about as bad as I have. She's a good little momma hen! ;)
On another note...My son is only going on 7 weeks old this next Monday and has been hospitalized for the majority of his life so far, an ER visit, 2 ambulance rides and a med flight, and then open heart surgery at only 3 days old...3 days old! That's when they are normally cutting you loose to go home and enjoy your newborn at home and relax and have a big welcome home with family. Most of you carry around a diaper bag and car seat with your babies, I'm carrying his diaper bag, car seat, feeding pump equipment, medications, and a cardiac handbook/ paperwork from most recent visits, and bag packed in case he for some reason has an emergency. So yeah, life has been an adjustment and we're still "learning". I am now a heart mom, we are a heart family...this is our new "normal". We just have to find our groove.
Now I will say this, because no one gives my husband enough credit that he actually deserves sometimes (including me!) He is stepping into a management position of a company with over 150 employees literally as soon as we got to come home, and has to "fix" ALL the screwups from the previous manager, he's going to school, and when he gets home he still makes time for the kids and me and makes sure to help with Andrew plenty. He even gives me a night out of the weekend where he takes over the night shift with Andrew to let me catch up on some sleep. On top of all of this we are stepping into the home buying process as of this past week. (Ahh!) I know he's uber stressed and busy lately, but I am still so very proud of him! We kind of got thrown into all of this and he's carrying us right on through it all. We couldn't do this without you babe!
Over the last ten years we've been together we have developed this mentality of, "That's all you got?!?!!". OR we just buckle down and embrace the ride day by day pushing each other forward and encouraging one another. That's all you can do sometimes. You are your spouse's biggest motivator and cheer leader. We may not have had our groove and everything where it should be when we first got married/together, but over the years we have become quite the team! <3
Anyway, we will go back in late October for his first heart cath to get an idea on his next surgery. Which should be around November of this year if all looks well. NOT looking forward to another major surgery so soon and handing him over again. Hardest thing I will ever have to do in my life! As for now we're trying our best to enjoy each day we have with our sweet little boy and praying for many more years with him. <3