Highs and lows

It's been a year, one I can not fully explain. It's been hard very hard at times. There have been some major lows death of my mother in law and my job burning down. Also some highs two of my cousins welcomed new lives in there life A's last surgery went so well.

The last few days have been no different. On Thursday we took A in for his heart appointment. He did so well when they got the medical braclet out he held out his arm to have it put on and opened his mouth when asked. He didn't even cry when they put the IV in and was giving high fives with that hand minutes after. What a little trooper! It took less time for the medicine to work on him before he was asleep do they used less which meant he woke up sooner afterwards. The cardiologist is very happy with his heart and by this point the device closing the hole in his heart will stay in its place. Also his coarctation repair looks great which means they do not need to see him for at least a year to a year and a half. Also no more sedated echos.

My grandfather has been in the hospital the last few weeks and moved to rehab. Last night my mom talked to him telling him how well everything went for A. He was so happy to hear that he was doing so well. Sometime during the night my grandfather had what they suspect to be a stroke and he died this morning in his sleep. RIP grandpa.

Wordless Wednesday

First day of school!!

Last few days have been busy! Connor turned six and had an outer space birthday party. 

On Sunday we went to the zoo to celebrate his cousin's birthday. 

Connor showing me a worm he found.

Both enjoyed the wagon we rented. Figured they would have fun last time A was in the hospital he was taken to the car via wagon and was very upset when he was taken out of it.

And lastly but definitely not least I just dropped Connor off for his first day of Kindergarten. Hope everything goes well do nervousness for him. Big, big day!!

Can't sleep

I'm laying here listening to my son sleeping knowing how beru lucky we are he is here alive and well. If we had him say thirty years earlier would he have survived his first year? I'm not sure. If the ultrasound technician hadn't second guessed the twenty week ultrasound I'm not sure I can say we would be in the good position that we were in. His story had the potential to end much differently.

Four heart babies have died this week. I... It kills me to think about this. They never made it to the first birthday most of their short lives was spent in the hospital. It just isn't fair. But who said life was fair? Because it's not. This year has shown me over and over that life simply is not fair and it is not always easy.

I mean let's look at this way Ausen is alive partially due to the Loss of another family. During his open heart surgery his heart was stopped and a piece of his tiny aorta was removed and replaced with the  tissue of a donor. Somewhere out there is a family who I owe a debt to one that I feel can never fully be repaid. I know I  am rambling  right now it's late and a just ache for the families who have dealt with a lose I can not fathom. My boys are my life and all I can say is thank you, thank you for donating. I will do the only thing I can think if to pay it forward be a donor myself.

I wish more people saw how the world I have been thrown into can be. I am and always shall be a heart mom it has changed me in ways I did not know where possible i and my husband find ourselves when talking about heart kids as just saying our kids. How frustrated we have been in the lack of funds for research . People have asked me what caused Aiden's heart defects simply put we have no idea most of the families who have children with heart defects do not know . It just happens and without proper funding and research we may never fully understand.

Decision made

Ok so my brother use to work at that school and he said Connor would be better off at the school by our house. Education wise it's not that great . So that problem is now solved.

Hello

Can I just say life for us right now is crazy??? Should be little obvious with my posts as of late. Must decide on something ASAP. Connor who was suppose to start school on the second may be starting earlier. Depending in what we decide to do! Got a call today he had been accepted to a charter school! I did want him to go to one just... School starts tomorrow, yeah. Which means he will start school a few days late we also did not get orientation. Decisions, decisions. Have until Friday to decide. Thinking about what we should do! Smaller class sizes, rules less strict but that's a quick change on when he starts!!!

Also one thing i did not mention on Monday was bedsides beings Aiden's surgery date it was also my mother in laws first birthday since her passing :(. I know hubby struggled with it. It has really been a hard year for us to say the least.

And that is why I want to say how thankfully I am for my boys. They have brought me a new perspective in life. Connor is so quick to make holes and works do hard to make me laugh and Aiden? Oh this kid amazes me do much he is so strong! He is not on any pain meds. They gave us plenty he just doesn't need them cause he is acting completely normal! Wow just wow kid thanks got showing me what it is to be strong. And thank you Connor in showing me it's ok to laugh in even the hardest if situations.

Update

Aiden is doing really well. He isn't in pain and not even on any pain meds! We're in the process of bring discharged right now :).

Recovery

I forgot to mention earlier that the one that leaked was almost two inches long. The other one was much smaller. Right now we are in a room and he will be staying the night. So far he seems pretty good overall.

Update

After a four hour delay they finally got him in. They are closing him up now. They do not have to remove his tonsils and after they are done and he is still out there going to do an echo cardiogram.

Delayed

Surgery has been delayed he was suppose to go In at 11:45. Now it's not until one.

We're just waiting right now to take him back.

Surgery info

Monday is A's surgery and we are to be at the hospital to check in at 10:15 mst and the surgery is set for 11:45 baring no emergencies. The surgery is suppose to last three hours I will update when I can on that day.

That's one more thing done

Well the dying trees in my yard are down. That's one more thing off of my very long list.

Aquarium fun

So we all decided that we needed yo have some fun before Aiden's surgery next week and before Connor starts school. Earlier this year the aquarium opened and we finally went to see it today it was a lot of fun!

Gah!

(Little warning with the mood I'm in this post will most likely be full of sarcasm and some swearing, sure I'm born and raised in Utah but I'm not Mormon.)

There seriously are times I ask my self why the hell do I not drink??? The past while has really, really been testing me a lot. For example work we have a building, never mind we don't. Ok now we have it oh wait... Gah!!!!! So no we do not have the new building yet more delays upon delays . Probably because it's not privately owned its owned by the state! And yeah giveemt sure likes to make things easy right? Hah. You would think they would be happy to get someone into a building that has been unoccupied for eleven years? Yes? Maybe?? Hopefully...

Aiden has surgery in less then two weeks and yea I am anxious and have been having anxiety attacks. It's not as big of what he has had in the past but it's still SURGERY!i still have to hand my baby over to doctors and kiss him good bye. 

Talking about Aiden just got a five hundred medical bill from something done in match and there giving ten days to pay it. Umm thanks for that! Can't even figure out what he had that day? Shot maybe? Yeah don't have a fucking clue. Calling them tomorrow.

And on the medical stuff took Connor yesterday to register for kindergarten and they told me he was not up to date on his hep b shot? His six month was given on December 29 but oh no it should have been on the 31st so oh no they won't count it as done! WTF??? Thankfully his doctor is awesome and they have already dealt with it.

Let's see what else? Oh yeah my newly fixed car air conditioner broke again! It worked for a week... Also the two big trees in our yard are dying and we are having them removed next week. Thankfully my parents are helping with this one there putting the cost of it (2500 bucks) on their loan  so I can do payments. So going to ask again why the fuck do I not drink???

Wordless Wednesday

Repeat of little kid survey done last year.

Last years answers are in blue.

1. What is your favorite TV show?  Jack and the Neverland Pirates
Jake and the Neverland Pirates

2.What is one thing you like about yourself? My dimple
 My butt... (boy through and through)

3. What is your favorite thing to eat for supper?  Cheese burger
Pizza

4.What is your favorite color? Blue
  Blue

5. What do other kids think about you?  Thinks I'm funny.
That I am an old kid but I'm not I'm a little kid.

6. What is your favorite song?  Twinkle twinkle little star
 The imagination movers songs.

7.What do you like best about mommy? Hair

Hair

8. What is your favorite school subject (or is this case, what are you excited to learn about in school when you start?) drawing
 To read.

9. What is your favorite video game?  Robot fighting
Skylanders

10. How do you feel when you have to do chores around the house?  When I clean up I sweat.
 Grumpy

11. What do you like best about daddy? His smile
  His arm it's big and strong 

12. What do you like best about your teacher? na
NA

13. What is your favorite movie? Bugs bunny
 Tangled

14. When do you think your bed time should be? Staying  up late
 Late

15. What do you like to do in your free time? Exercise 
 Play zombies

16. What do you want to be when you grow up?  A doctor
 I Don't know

17. What kind of people do you like?   Mommy
Everyone

18. What is one thing you would change about yourself? Nothing actually
 My hand it's sticky.

19. What kind of people do you not like?  Bad guys 
 Nurses they give shots.

20. If you had lots of money, what would you do with it? Save it
  Buy a popsicle

So sometimes there lack of communication at my job is frustrating! Found out that they did get the building so for the moment my hubby's and my job is safe! Though I have a new area once it started they have let go about five people and instead of being the runner and helping everyone I'm now over waste water which is what I am helping with over at the other lab.

No real new news.

Feel like I am in extreme limbo right now. Still at the other lab working. So far after two weeks of trying to buy a new building that is already set up to be a lab they have not yet been able to finalize it! Its owned by the state so I am guessing there is red tape galore. If they can not get this building I... I have no idea what we are going to do :(. Just beyond frustrated with it all right now. Hate not knowing what will happen its been 21 days and I feel like we have gotten nowhere so far.

Good news

A's last appointment went very well. His doctor said the thing with his kidneys is very moderate and so generally overall nothing to worry about. It could cause infection but since it hasn't yet it's not very likely and overtime should take care of itself. 

More good news is he now weighs 25 pounds and 12 ounces and is finally on the growth charts!!! He is now twenty percent for weight first good news I've heard in quiet sometime. Needed it.

The insurance has put the lab at a hundred percent lose and four employees were let go in Friday (not me). I am at a lose for words for this. Shock, anger at Diamond Tree who caused this with there carelessness and sadness extreme sadness at the lose. 

They are planning on rebuilding but not there, not there. Insurance will no longer cover for a building that close to an extreme fire hazard. Go figure huh? I don't blame them. We also do not want to be next to them ever again . So they are in the process of buying a new building. They found a building for sale that was built to be a lab, lucky right? Hope if works out if not I will not have a job come October.

When it rains it pours right?

Got a call over A's latest ultrasound they found a minor problem that needs to be addressed by his Pediatricion. Its something called hydronephrosis. Not quiet sure what it all entails yet. Figure it all out later bit read it could cause vomiting if so that could explain something's.

Ok the lab is definitely bad. There are going to have to redue everything on the inside. All the walls are going to be knocked down and rebuilt. It's by far horrible. There trying to find a place to put us temporarily while the lab is rebuilt :(

Heart mom

Just wanted to say that tonight I am thankful to be a heart mom. My son has unknowingly given me strength I did not know I had. Not sure if you all saw about the fire at the mulch company Thursday night. My husband and I work at the lab next door to it. There was extensive damage done ( picture attached shows just a glimpse). With my sin scheduled for surgery next month I of course started freaking out about the future will we have a job, insurance?? So many questions and do far we still have jobs but it could change the future isn't set and yes I have been panicking at times but seeing my son who has been through do much and is still so happy and energetic that I realized its a bump in the road a small one compared to what he has been. Though the pictures I have seen of the lab break me apart I try, try to stay strong for him, because of him.

Looks like we will be getting paid through insurance. The lab is not opening Monday, to much damage.

But , but I will be working at the lab that will be getting our samples. They need help with the BODs which have a five day incubation period. So you need to get the dilutions right the first time. Which is why I'm going there.

I do not know what we are going to do. There is a lot of damage done to the lab. It's bad, really bad. And I Dom just trying not to freak out.

The mulch company next to my job caught fire and there is a chance our sprinkler system went off if it did we could be out if a job. Beyond scared right now what am I going to do?

Ultrasound

A had his ultrasound yesterday we do not have the results yet. No idea when will get them. I'm really not stressed about this one if his peering is any indication on how well his kidneys are doing he's fine, more then fine ;). 

He was overall good about the testing. He did cry at first mdinly because he's had some not do fun tests that involve an IV and sedation, but not this one. As soon as he realized it was not hurting he stopped crying and started acting like his normal two year old self. Which meant me kneeling by the table and holding him down by making it seem like I was giving him a message. Especially when he was on his tummy. They had Finding Nemo playing but it was not keeping his attention. While on his back he wanted to crawl away. And who can blame him? With all the tests he has gone through  I would want to crawl away to!

I am really hoping that his surgery next month fixes ado merging he has been doing a lot, randomly throwing up. Monday night he was just playing in the living room watching Rio and he turned around and was just covered and in throw up no warning, nothing ! He didn't even make a sound just suddenly totally covered. He coughs he throws up, he cries he throws up, he does nothing and yes he throws up! It's incredibly frustrating! Starting to wonder if this thing on his neck is causing the problem if it does go all the way up to his tonsils it may be affecting his gag reflex. Hoping that's it cause the surgery would fix it.

And Iit got to get back to my kids because the two year old thrw through crayons all over me. Oh the joys if being a mom!

Much needed update

Sorry it has been so long since I have last updated! I have been incredibly busy with work. Let see what has happened since my last update? Well my oldest has lost two teeth!

Andy youngest? He is doing well his hair has gotten longer and very curly! I do not have the heart to cute it it's just do cute! He weighs 25 pounds now do he is growing and acting like a normal two year old.

Just last week we went on saw the ENT doctor about his neck he has bilateral branchial cleft cysts. These will be surgically removed in August 18th. Surgery should last about three hours and will be kept overnight. There is a chance that if they connect to his tonsils they may need to be removed as well. He may also have a drain if it is that large . We won't know until they go to remove them. He also has a ultrasound set for Tuesday there is apparently a genetic correlation with this defect and ptoble with the kidney do they want to make sure they are working properly. He also had a hearing test and passed with flying colors. So we are done with those yay!

Few days ago we went to Fantasy con the boys very much enjoyed it. My oldest went as Harry Potter :).

Eye appointment

A had his eye appointment today and everything looks good. His lazy eye has gotten even better. Looks like both of his eyes are now tracking together. They also checked to as  if he needs glasses and he does not need to be seem again until August. They want  keep an eye on him due to many different medicines he was on the first few week  of  his life. And  the many ,many x-rays. I admit  the large amount of x-rays he had to have do bother me a lot :(.

Looks like his medical stiff is going to cost us an extra thousand this year cause he is going  hit the maximum out of pocket again this year. The synergis shots along can possibly hit it. He  is getting one ever  eyes are four thousand a pop! We are responsible for twenty percent of that (plus the copy which we will full fill that with one shot).  So that's about eight hundred a shot, we are getting s one financial support for it thankfully. Otherwise hmmmm ouch! Though part of the medical stuff will hit next month at his cardiology appointment.



A after the eye appointment. They had to dilate his eyes and he refused to look a me and take a picture. Acting all Joe cool I suppose.

I HATE CHDs another little heart warrior who I have been following for several month  died last night. Heart is broken fir her family. Babies should not have to go through that. They should grow an  love an  not be in pain an  die before there first birthday. It's not right.

update

Sorry for the lack of updates. Not much has been going on. A is doing well he is growing yay! Still just on pediasure. We tried to decrease the amount he was drinking but that month he did not gain any weight so back to just it, no milk. He is up to 21pounds and 7 ounces.  Saying a few more words but is still much more explicit with his hands over his voice. I know he understands just doesn't say much.

He has a cardiology appointment in February. Hopefully they are happy with his progress and with his heart and growth. Because sometime this spring or summer he will need to have another operation. Can't hold this one of forever. The small hole  in his neck has started to leak more and its pretty yucky. But can't deal with it until he is all cleared by cardiology. So waiting game on that. We see the eye doctor in a few weeks feel confident about that appointment.

Let see we have not done much since my last post in November, since he is on synergis once again we Hhave not been going out much. The bugs around here are really bad quiet a few heart kids have been hospitalized due to the bugs. I  one of those mom's who goes overboard in wiping down the cart before he goes in there.

A has a new behavioral thing that is driving  this mom crazy! If I leave him for too long he cries so much he throws up.. and  does it often. Just what you want a kid who is way behind in growth to do *face palm*. That has been just a little bit stressful ok more then little. Gotten  to the point  that going to the bathroom or taking a shower is stressful . The pediatrician'  idea to help stop it so did not work! Said to make  him sit in it for a bit before cleaning  him up. Yeah well he just plays with it and makes an even BIGGER mess. Now everytime he starts crying big brother goes running from the room yelling I don't want smell the throw up! Funny thing it usually strawberry pediasure so it doesn't smell that bad. Though hate to think how big he would be if he was not doing this meh. Hope he stops this soon for all of our sanity. Has made bedtime oh so fun.

Well that's about it just going to end this with  pictures.

Shows how small he is.

Signing at the restaurant after Christmas.