To some this may be strange, but to us today marks a day that will forever be etched into our memory...
We definitely try not to dwell on it and enjoy our time with him and the rest of the kids, but to be honest we have our days. Probably more me than anyone, but I think that's because I'm the mom.
A couple of my favorites moments from his 1st stay at the hospital are...
A year ago today our little man had his very first open heart surgery. It's hard to put into words how this has affected us and our lives. We wish that we could change the way Tyson's heart had developed. We wish we never had to endure what we did as parents or what he did as a baby.
It's been a year and we don't talk about it all the time, but we're reminded every day just how much we all went through. Seeing Tyson's chest just breaks our hearts. Knowing that, what has been done to him before he was even a month old, is more than what anyone will ever go through in a lifetime, is just beyond comprehension some days.
We definitely try not to dwell on it and enjoy our time with him and the rest of the kids, but to be honest we have our days. Probably more me than anyone, but I think that's because I'm the mom.
There are certain things that trigger those memories, whether it be something on tv, someone asking about our delivery story, certain songs or even the smell of certain hand sanitizers. It's strange how little things like that can bring back such strong memories as if they happened yesterday.
Rob & I deal with it in different ways, but it's something that we will forever be bonded by. We still get somewhat choked up & teary when people ask about it. We were very close to there being a chance that we could lose our son and as much as we are thankful he his here with us today, we wish we, including Tyson, never had to go through it.
We know that they repaired his heart and is doing better...that he still has the murmur and he was growing into it, but I know that I won't be "okay" with it until they tell me that the murmur is gone and we'll see you in a year. It's so hard to just sit back and just put it on the back burner and not worry. I'm sure I'll never stop worrying, I'll probably even end up going to his yearly echo and cardiologist appointments with him until I'm well into my 90's!
I will say this, even though I wish we could have taken all that away I will forever cherish the friendships and memories that developed between us and staff at St. Joes. Those moments are ones I hope to never forget!
- After they were born and Tyson was brought in the PCTICU, Jess (Resp. Therapist) picked out a little kitten beanie to put in his bed---everyone else said not to because kittens were more girly, so she asked Rob if it was alright---in every effort not to affend anyone Rob said it was fine, but immediatley told me he thought it was girly, but since we had a cat he would deal with it!
- Laura (his nurse mainy times throughout our stay) taught us an easier way to tube feed him called "Gavage" feeding. Now to most people no one would think that's funny, but to us for whatever reason we all would just crack up any time anyone would say "Gavage" and especially when Rob would end up saying "garbage feeding"---I know we're crazy silly, but we were also on pretty much no sleep so anything can become funny when that happens!!
- The one and only time I had a breakdown, Nicolle (Nurse Supervisor & now a dear friend), saw my face on my way to his room one day and immediately came in after everyone walked out and just sat with me while I cried and cried, and probably made absolutely no sense, but that didn't matter to her she just wanted to make sure I was ok and that meant everything to me.
- Oh, the number of trips we made to get soda out of the fridge during a 12 hour period...we'd try to be sneaky...we know it's free to us, but we felt bad some days! I don't think we drank too many but they were little cans and Rob could never have just one little can! So we'd order one with our meal then go run and get a couple more from the kitchen!
- I'd say the food, but we all know how great hospital food was! After being there for so long, we did become good friends with Dominos late night drivers...they delivered to the hospital which was so nice!
- My absolute favorite memory...Rob & I would play rock-paper-scissors when deciding who would have to change Lincoln's poopy diapers and every time we'd play the nurses at the station would just crack up! We'd have no idea they were there until we'd hear them laughing cause obviously whoever lost would make a big stink about it! They thought it was great that that's how we'd decide who would change the diaper!!
They are like family and we will forever be thankful for what they did for us!
Comments
Even though I really can't comprehend what you and Rob have experienced this past year, I can tell you one thing. The love that you have for your boys is obvious. You made me cry reading this.
It's okay, I cried too when I was writing & putting the pictures on. But honestly for me I think I needed to write it down. I hadn't done so since he was born and this was definitely healing for me.