After some tears and anxiety we have the date set

He had picked the day a few days ago.  We worked with the 2 weeks in March the cardiac nurse gave to us.  I called and left her a voicemail, but she never called back.  So, then, I called and she said the doctor (there are two cardiac surgeons) she was planning on may be on Spring break that week.  Uhhhh....why did you give us the choice then?  She said she would call back later that day or the next day.  Me, thinking by the same time the next day was growing inpatient by Friday.  I had to leave work at 12:45 to get Jaemin to kindergarten screening by 1:30.  Needless to say, I knew I couldn't talk to her in the middle of his screening at the busy elementary school, so I called to ask before I left.  Well, the receptionist decided I really needed to be stressed out and she asked how she could help me.  When I let her know I just needed to find out if we were getting the date or not she told me the nurse was wrong and the doctor would not do his surgery that day.  I told her that that day worked out perfectly and I needed to know for sure before they moved it up an entire week and I only had 1 week to prepare, at home, work, etc. plus figure out what to do with the kids because Cole specifically picked a day the kids would have no school to work around.  She couldn't seem to understand what I could possibly need to do before his surgery with 5 kids to think about.

The nurse called shortly after and I explained to her that the weekend was here, we only had 2 weeks left to plan, I had almost no minutes left on my prepaid phone to keep calling to get this arranged and get my questions asked.  I explained that I just needed to know.  She was NOT very nice to me.  I won't go into exactly how she talked to me, but needless to say I ended the conversation with "I'm at work and can't deal with this right now, by the time you call this afternoon at home I will have talked to Cole and maybe we'll get a 2nd opinion at the neighboring children's hospital".  I was starting to cry from the frustration and stress and didn't want that at work.  She called back and left me a voicemail to apologize for how she spoke to me and said she would call after kindergarten screening.

I walked in the door after getting the kids, after screening, and one of the surgeons called.  He said he just wanted to make sure we weren't stressed about the date because the idea of this surgery is stressful enough on a family.  He assured me one of the two would be there that day and he would be set to have surgery.  He said in addition, to alleviate some financial stress (yep, the out of pocket max on our insurance is high deductible, so that is high too) by paying for our hospital night since we have to come the afternoon before to meet and run tests.  He said the nurse would be calling that night.

She called last night after we ran for groceries and apologized again.  She told me they knew their job and sometimes forget all of the planning a family has to do prior to surgery (especially for 7) and how stressful it is.  She told me they would get us the hotel room and maybe even a 2nd night so Brian wouldn't have to leave so late.  We're hoping to stay a 3rd night (on our own dime) so that if he gets moved to step-down by that Sunday the kids can see him before they leave.  They, more than likely, will not be allowed in ICU, so one of us will just keep them busy at the hotel until they can see him, unless they say it isn't going to happen.  I think it would make Chelsi and Jaemin feel better for sure.

The worst part will be 5-10 days of hospital food and the expense of it.  Luckily, she said they have a fridge and I can bring some snacks and food with me and I can get by on little.  He'll be well fed since he's the patient.  I felt so much better when she gave us the date for sure and we could move forward with the next step of planning.  With this kind of thing and this many people and a hospital far away, it takes a fair amount of planning in steps.  It's not like it's an outpatient surgery and he'll be out in a day or back to school in just a few days, this is 3 weeks away from work and school with the possibility of only returning part time until he gets his energy level and tolerance built back up.  I have no doubt he'll do well and luckily he's very strong and very healthy, but open heart surgery is tough on the body and stressful on a heart.

Soon enough, like all of the other things in our lives, we'll be able to look back and just smile at the memory of it.  And while he'll have a lifetime of these, the kids will be older and we'll be more seasoned at it as will he.  And, hopefully, there will be advances to lessen the number of open-heart surgeries and allow for some cath procedures here and there instead.

It's time, we've picked a date.

The Cardiac Coordinator called today.  She said we can pick any day.  Feels weird.  Well, today's  a good day to saw open my son's chest and play with the one thing keeping him alive.

She said there were no real, off-limits, days, so we decided Cole should decide.  We took the school schedule off the fridge and since they're off 1 1/2 days, after his birthday, next month, he decided he wanted it then.  It will be 1 1/2 less days of missed work.  It will also mean we can more easily take the other kids out of school to be there that day.  They will more than likely not be allowed to see him in the ICU since it will still be flu season.  She said they could come back when he's in the step-down unit, but that will be 2-3 days and it's a 2+ hour drive, so I doubt they will.

Now, I just have to wait for her to call me back tomorrow morning  to confirm.  We'll meet his surgeon the day before.  Don't think for a second I hadn't already done research on the two surgeons there.  He'll have blood tests, get xrays and sign some forms.  Then, we thought we could take the kids to a hotel (she says there are hospital discounts) for the night and they can swim before the stressful next day.  It will be good for Cole too.  Surgeries are at 7am except on Wednesdays, so it will be 7.  I'm dreading saying good bye to my sweet 5 year old for so long, but I know I need to be with Cole.  He will need me more.  Jaemin doesn't really need me and won't miss me half as much as I'll miss him.  Thank God for Skype!  I don't have many cell minutes since I'm on a prepaid plan, so that leaves my only real communication with Skype.  Not going to be easy for that long of a period, but it is what it is.  I'd like to up Cole's texts too, so he has something to do.

Hopefully, the pool table will delivered next week so he can do that.  With the snow in the forecast who knows.

I have 2 more weeks to tie things up at work before I'm gone for 3 weeks with Cole.  Just thinking about all this is so weird.  It's been 16 years of being told he will need a cath, then he'll need surgery, then he won't need surgery.  Then, we switched hospitals and were told he would definitely need surgery.  So thankful we switched 3 years ago.  They had never done an MRI and all tet  kids should have an MRI.  You cannot completely tell from an echo or EKG the true picture.  We would never had known without the MRI.  Dr. R said his heart function was still good but the dimension of his right ventricle had increased so much from 3 years ago and if he waited much longer he could lose function and you do NOT regain that.  Honestly, I think the other hospital would have killed him.   God tends to lead me the down the right path and even though I'm usually pretty scared and leery to go, I'm glad I do.

If you personally know us, we don't need a whole lot other than  prayers and maybe cards for Cole.

Lots to think about

Funny how you think you have your mind all made up and then in one instance, one experience can change it just like that.

We thought we had it all planned out, or pretty much anyways, what we were going to do with the kids and how we were going to handle the week of Cole's surgery.  I wanted it in my head so when they tell us what's going on this week or next  I was somewhat prepared so I could better process.  Then, my uncle was killed this week.  He was cutting a tree down and it fell on him.  He's the youngest child of my grandma's and is barely older than myself.  His kids are my kids' ages, I was in his wedding and babysat his oldest.  Because of family issues, my mom didn't quite make it to the hospital before he passed away.  It just broke my heart for her.  She is the oldest, he is the baby of the family.  I know how much he meant to her.  She couldn't be there to say goodbye to her baby brother.

I know, I really do, that Cole's surgery is going to be fine.  I know that it must be done in order for him to live.  But, it's his heart and kind of an important organ to his survival.  I was so set thinking the kids could just stay home that day since it's so far away from home.  They could stay in their routine and their aunt could stay with them until Brian leaves me at the hospital.  But, after this week, I'm doubting our plan.  What if anything happened?  Maybe they really should be there, just for that day, just in case?  Will they really focus on school that day not knowing if everything's okay with their big brother anyways?  It will be much harder to have them with us, but at the same time is it  really right for us to deny them of being with their family.  Really, this IS a big deal.

Another plan changed and unsure.  We're going to have a lot of questions for the doctor so we can figure out what to do.  I've been trying to chat with others at the support group, but it's been half one way and half the other.  We may lean to our family's old standby.  We'll call a family meeting, present the facts and see what the kids think.  See how they feel.  Cole will be out that day, so he won't even remember them stopping in, but it may make them feel better if they can just see him before they go home and then we can Skype the rest of the week.  I know Cole really can't wait until it's all over with and I'm completely with him on that.  I'm getting nervous about everything.  And I just want it to be over with so I can stop.  Stop worrying about the 4 younger kids, stop worrying about how to work things out and stop worrying about Cole being so scared and being completely helpless in it.  It really SUCKS being so helpless watching your child go through this.  I can't imagine how a cancer mom feels.  Kids should NOT be born with diseases and that's that.

The waiting game

We went to the hospital (a 2+ hour drive) to have Cole's cardiac MRI/MRA done.  They were running an hour late, so it made the day even longer.  We didn't get home until 6:30 and both of us were just tired from the driving and sitting and waiting.  The radiologist said they got good images and he was beginning to circle and calculate.  Now, we just wait for them to give those numbers to the cardiologist and then the team will get together and decide how to proceed.  Cole said he hopes it's awhile until he needs another one.  2+ hours in that machine and lying still and taking your breathes is kind of tiring and SO not fun.

Now, I'm wondering what Cole will decide if he gets choices.  He said he wanted to do it as soon as school was out this year, if possible.  He really doesn't want it during his senior year and since he's taking a couple of college classes I would agree that it's not a good idea.  I reminded him that if he did it after school wrestling would for sure be out.  He said he was so mad at the coach for how he treated him that he didn't care.  I tried to remind him that he would only be punishing himself, not the coach.  Those kinds of coaches do not care about their athletes, only themselves.  I told him even if he changed his mind come fall he wouldn't be able to so by doing that he'd be making the choice already.  Then he said he didn't want teachers coming over.  I think there's probably more to his worries and concerns, but he's just not sharing them right now.  He's like me.  He needed to hear the information, but now he needs time to let it sink in and him to just think about it.

Now, if my mother in law would just leave me alone.  I know she's just trying to make sure we know she cares, but WE KNOW.  Trust me.  Asking constantly if we know anything and acting like we're hiding anything is just pushing us away and making us not want to talk.  We've both told her multiple times that it would be at least a week or two after his MRI until we knew anything and we would let her know then.  Just let got and trust us and remember he's our child!  We've had this fight before.  First we will deal with everything on our side and get things figured out for this family of 7, then we will tell people who's doing what and when things will take place.  Wait until we let you know, please!

All things must come to an end

Everything, good or bad, must end at some point.

I realize that after Jaemin came home I was consumed with helping him adjust because it was rough to say the very least.  He's one of the worst case scenarios in adoption adjustment, but we're getting through and I love the kid.  But, it was by this time that all these girls just left me.  Left me when I probably needed to talk the most.  Luckily, I had online adoption friends who got it.  I've grown and changed and I guess I outgrew them or they undergrew me...I don't know.  Somehow, it's just done and over and they began to choose it and I am finally accepting it.  I really wish it didn't have to end like this, but it really does affect me in other ways to be as hurt as they made me feel and I don't want that anymore.  Place in my life's book closed.

Cole's wrestling has also come to an end.  Today was it.  He ended his very last match with a win.  JV, but glad to see it.  No matter how many wins some of these boys have, not matter how tough they look and act, I know it's my kid who is the toughest, no matter how many losses.  He's out there with his heart, pushing past most broken hearts' limits.  Doing something some heart kids only dream of.  I hope he gets his surgery so next year he can really see what he's capable of and realize just how good regular people feel because they're heart isn't so tired!  I'm so proud of this kid no matter what!

And, while I was at the tournament, Brian called to let me know Jynx died.  We don't know why or how, he said he laid his head on Chase's tackle box and died.  He loved Chase so much and Chase was his person for sure.  We had been keeping him in for the cold and Brian said he whined to be let out and we then we made him come back in.  We wonder if he knew and didn't want to die in the house.  We kinda knew something was coming, but I think Chase is still pretty sad and Camo for sure is going to mourn since Shot Gun disappeared he has no brothers left.

your kids grow up

whether you want them to or not and it IS hard.

Luckily, both of our older boys have been too shy to ask girls out, so no girlfriends yet.  Cole has become friends with a coworker that he's begun texting constantly.   I had to remind him if he kept it up he'd run out of texts for the month before the plan renewed (GoPhone).  He said she keeps texting and he has to answer.  I asked what they say to each other and he said she just texts to say 'hey'.  Oh sheesh.  I informed him he does not have to text back when that's all she saying.  Definitely not during school.  It can wait until after school and after practice.  I told him if he likes her so much he should ask her out already.  He said he didn't want to.  He said she changes boyfriends too many times.  Smart boy!  That talk alone made me feel better about his common sense.   She may be a really nice girl, but at least he knows enough not to knowingly get his heart broken.

The texting has slowed WAY down.  They still text each other, but on a better level. With all these gadgets out there nowadays, it's much harder for parents to keep up with kids.  They can say and do so much with these things.  I keep hoping that as long as we keep their user ids and passwords and occasionally check until we trust them it will be okay.  But, what I realized so far is that watching your boy talk to a girl really brings out the mom in you.  I told him that in no way will any girl  be good enough for my son, but I will always do my best to make anyone feel welcome if he finds her to be good.

Teens in general do require different parenting.  While I tell Kaelin that I'm not okay with the yoga pants wearing girls who don't cover their rears (tiny girl or not) I'm trying to pick my battles.  Like lately, I don't care for what she does with her hair.  But, I don't know the teenage styles and I'm not going to make her feel  bad about herself when she really did spend time putting it that way.   She tries to be a good girl, so that's more important.

There are million battles you could pick with 3 teens, daily.  But I'm learning everyday to bite my tongue more and more and only talk about the important things.  I incorporate some of the tactics my mom used or tweak those tactics or come up with new ones, but I keep trying find my way through this maze of momhood.

Trying to enjoy all of the little things.

Really just trying to sit back and enjoy.  Trying not to get upset over stupid trivial things.

Here is Jaemin actually coloring.  He absolutely hates coloring.  It's part of his sensory disorder.  It's just torture, so we've been doing everything to get him to half-way enjoy it to the point he'll get through school.

Cole had a rough weekend wrestling at a pretty big tournament.  He lost all 4 matches and texted us (we couldn't go since it was 4 hours away) that he wanted to quit.  I figured he just needed to cool off, so Brian texted back to remind him that he's JV wrestling in a big Varsity tournament against state contenders with only 20 minutes between matches when you're supposed to have 45.  On top of that you have a heart condition.  He just refuses to let that be a reason for anything.  While I'm so glad he has never made excuses, sometimes you just need to say okay.  By the time he came home Saturday night we talked to him without bringing that text up and he seemed fine.  We decided not to talk about it and see if he went to practice today.  Sure enough he was back at practice.  Now, I'm praying he can place at the JV tournament.  Not for me, the team or anyone else but himself.  Just to show himself he is special and he can do it.

Chase is finally enjoying the beginning of high school football.  Yes, the 8th graders start working out with the coach this early.  They ended up calling off school tomorrow for the expected snow and he came up all bummed he was going to miss weight lifting.  Well, that's a new Chase.  Good to meet him.  I don't need him to be the best, but to put his best out there.  That's all we want from any of them.

Chelsi is all signed up for gymnastics and is wanting to do it more often after seeing the Gabby Douglas story.  She's so ready to go, but she doesn't realize she's only in tumbling.  We could never afford full on gymnastics.  It's over $100/month!

Kaelin is playing on her first modified league for volleyball.  They won't be good, but it will good for them to play good teams and she'll have fun with her friends.  Her coach from last year volunteered again and she's been trying to get that overhand serve down all Winter.  Hopefully, she'll get SOME over the net.  :)

As Cole gets closer and closer to 17 and I realize he'll soon be 18, I'm realizing the short time we have left with each of them and I want to squeeze in more talks, more cuddle time, more movie nights.  I LOVE sitting and hearing about Cole's  night in a hotel with 2 other wrestlers and the jokes they play on each other.  The sense of humors these boys have and the good stuff being part of a team brings out in Cole.  I love seeing him happy and finding a place.  I pray everyday he continues to figure things out.  I know he doesn't want mom and dad telling him what to do anymore and deep in my heart I know he knows what's good and right, I just hope he finds some good honest thing to do in his life to pay his bills and be happy.

I love these kids so much.  And they really are good kids.