Coarctation of the aorta

I found this picture that shows exactly what is wrong with pax. One of the first signs we new something was wrong of course was when his pediatrician heard his heart murmur. One thing that was different about his was that it was very loud, which isn't normal. and she could hear it more from his back. Also when we went to see his cardiologist for the first time they checked his blood pressure around his ankle and it was really low, but up on his arm it was fine, so that tells you something is wrong with blood flow. The only symptom paxton physically shows from this is he has really sweaty, clammy, cold feet. Which he has had since he was born and we always thought it was weird that his feet would be cold, but sweating at the same time. He also gets fatigued really easy and sleeps allot. He will sleep 12 or more hours at night and then he will need a 3-4 hour nap during the day, sometimes i feel like all he does is sleep lol Hopefully after his surgery he wont be so fatigued all the time and can play a little longer. I'm just so grateful for his pediatrician for hearing his heart murmur and telling us to get it looked at. He could have been one of those people that died of a sudden heart attack at only 20 years old because we didnt know about his condition. I'm so relieved too that all he needs is a surgery and he will be totally fine after, his cardiologist told me out of everything that could be wrong with the heart this is what you would want because its fixed easily and he is totally healthy and fine after he is healed. 

Sorry if this is all i talk about, its just on my mind 24/7. I had a really bad night last night, pax was having a rough night as well and it got me all upset. i just get the worst anxiety every time i think about him laying in a hospital bed being miserable, i try my hardest to push it aside but i just cant. hopefully pax will totally prove me wrong and me AMAZING when he has his surgery and wont be so upset.

Another St. George trip

We had another fabulous time in St. George. We got to try a new little eating place called breakfast at Tifinys ;) it is a creperie and AMAZING, its so cute too!!! We went swimming and lots of shopping. The weather wasn't very good until the last day of course. So the kids got to play at the park one day. It was so nice to not have so much anxiety for once, especially because pax was in a really good mood and slept in every day. I finally felt normal since we found out about his surgery, that was the first time in a long time that i didn't have a nervous break down everyday. I feel like it consumes me everyday, the anxiety and stress get too much for me to handle sometimes, i really cant wait to get it over with. we only have 4 weeks from today until the big day. it cant come soon enough.

Donations

As you may have heard Paxton is having surgery on April 9th for his heart condition. We live off of one income, Greg's. So as you can imagine trying to pay for the medical bills is going to be rough on us, so despite the fact that this is extremely hard for us to do, we are asking for donations to help pay for the medical costs. We are being told it will be around 5,000.00 out of pocket that we will owe. If you can help us in any way we would greatly appreciate it. I have a DONATE button through Paypal on my blog where you can donate money. (you do not need a Paypal account to use it) Let me know if you have questions. Thanks

I'm so over it!!!

Seriously i'm so over being sick all the time. But a good friend of mine came to the rescue, she found out that we were all sick with RSV and asked me if i had ever tried essential oils, i have not. She told me how wonderful they are to use on sick babies since there is not much for them to take when they are sick. I thought what the hell, i have nothing to lose in trying them. Can i just say they are AMAZING, and i recommend everybody to try essential oils when you are sick. You see the week before we thought paisley had the flu, but really she had RSV and we didn't do much to help with her symptoms besides Tylenol for her fever and body aches. So she had some really bad nights, and the poor thing was just suffering. Well we did the essential oils with pax right away, and they were night and day with how they handled there illness. You see lemon helps with congestion, i would rub a little on his chest and i'm not kidding his buggers would dry up and his nose wasn't so runny. and there is one called breathe that is amazing for when you have a cough or a tight chest, pax was able to take his naps and sleep really well at night with that stuff. and then the last one we all have been using is the on guard on the bottom of our feet to help with our immune systems. This stuff helped us so much while pax was sick. I'm really not one for essential oils but now i'm a true believer!!!

I was pretty proud of myself, i have been craving oatmeal choc. chip cookies and decided to bake some homemade ones, and they were so good. i cant believe finally for once in my life a baked cookies and they actually got eaten and not just thrown away because i may have burned them. lol it only took me a million times to bake cookies to finally get it right!!!!

once me and the kids started to feel better my crafty mood came back and i needed to do something crafty. so a friend of mine is moving and was giving away this cart for free. it was originally a wood color. so i thought eh its free i will figure something out with it. So of course i had to spray paint it a fabulous color. and now its so adorable. I didn't know what i was going to do with it, but once i brought it home it popped into my head that we have a laptop and a printer that is literally sitting on the floor, so i put the printer on the bottom and the laptop on the top with a cute lamp and its perfect!!!!

And FINALLY as of yesterday this little guy has been feeling much better.To prove it he ate 2 hot dogs and cheese for lunch lol and has been sleeping 9-9 without waking up for a bottle, all on his own!!! i thought that day was never going to happen since this kid likes to eat every 5 min. so now hopefully i can actually get me and the kids ready everyday, and have a normal life again for the next 6 weeks until his surgery. and we may or may not be going to st george soon, which is very much needed to get out of this crap air in SLC.

Bad news :(

Well today started out really bad with paxton puking ALL OVER me today, and he woke up every half hour last night so im running on VERY LITTLE sleep right now. We took him to the doctor and we found out he has freakin RSV, WHAT?! seriously this is not happening, i new after i heard that his surgery was going to be pushed back, i didn't know how long though. So when i got home i called his cardiologist and heard the dreadful news that sent me into a huge crying fit on the phone with him. He said it takes a good 6 weeks before you heal from RSV completely, they will absolutely NOT EVEN TOUCH him if he has it. the outcome after surgery could be very serious. But he did reassure me that paxton is very healthy and his heart is perfect. He feels waiting 6 weeks is totally fine and that i shouldn't worry about anything happening to him. which was a bit of relief knowing he is not emergent and that we would not have to run the risk of him becoming very sick. But don't get me wrong my anxiety is still very much at a max right now, i mean good hell my babies have been sick for months now, WHAT THE HELL AM I DOING WRONG?!?! i feel like i have completely  failed as a parent right now. why is my family unable to stay healthy, i mean seriously we have had croup, bronchitis, stomach virus, flu, ear infections and now RSV.  I'm in the dumps right now and not sure how to get out. HELP ME!!!!!

Valentines day and more sick days

Since my last post about paxton and his surgery we scheduled his surgery for feb. 26th. The nurse on the phone told me he couldn't get sick before his surgery, When i scheduled it, we had 3 weeks until his surgery, how in the hell was i supposed to keep him healthy in the midst of flu season? Well as you could imagine paisley became ill, and i tried my HARDEST to keep him healthy, i mean even making her wear a mask yes a 3 year old and a mask don't mix well. after a few days of her being sick, she looked really bad, like on her death bed bad. so off to the doctor she went and sure enough she had influenza, but it had already been 3 days so she couldn't have tamiflu, luckily her pediatrician new about our situation with pax and gave all 3 of us tamiflu. so we started taking it pronto. well she started feeling better this past weekend and we were all doing good so i thought we dodged a bullet, WRONGO pax started coughing a little on Monday and we just thought maybe a little dry throat, nope he is full blown sick today. you see you can take tamiflu two ways, the first way is if you have the flu you take 2 doses a day for 5 days, but you can take it once a day for 10 days to prevent the flu, since we weren't sick when we started taking it we have only been taking it once a day. i did find out today that if we think pax has it that we can bump his dose up to twice a day to see if it will shorten the illness. so im guessing because he is sick now, he must have already been sick before we started taking the tamiflu and thats why hes sick now. whatever. So what does this mean for his surgery next Tuesday, well the nurse said we need to take him to the doctor tomorrow and if she just says its a cold and he has no major infection or the flu and is feeling better by Monday we are still good to go, otherwise we will have to push it back a week or so. I'm so hoping to get the OK, i have been an absolute stress case and cant imagine waiting another week or more, I WANT TO GET IT OVER WITH ALREADY. and lets just say im going CRAZY being in the house for 2 weeks straight, literally i have not seen the outside in two weeks, i think i have even started talking to myself lol 

this adorable picture was me and pax on valentines day while daddy and paisley were at the doctors office, i didnt want him going to the doctors in fear he would get sick. who new he still would. so as you could imagine our Valentines SUCKED, i bought everybody cute little valentines outfits, just for us to sit around in and paisley to sleep in all day. oh the joys of parenthood, i sure hope it gets easier. and im about 2 seconds away from putting my entire family in a freakin bubble because all this sickness is going to be the death of me. i officially HATE winter, we are seriously talking about moving to st george i will let you know if it actually happens.

Results of Paxton's ECHO

I'm not even sure how to start this post i'm so worn out and emotionally drained right now. I guess i will just start off with how the day started. We got to his ECHO appointment at 1:30. They do the usual measuring and weighing of him, no biggie. But all the trauma started with him needing a IV for his sedation, i kept being told by other people that it was just medicine he would swallow, so i was thrown off when i found out he was getting an IV, but surprisingly he did really well. (as well as a 1 yr. old would do) they were supposed to come get him soon after, they didn't come get him until almost an hour after they put the IV in, i can tell you how stressful this was. First off pax hasn't been able to eat since 10 that morning so he was starving. And second he HATED the IV he kept trying to pull it out. We were trying to distract him and entertain him as much as we could. When they finally came back and got him i was some what relieved because they were going to sedate him and i just thought oh good he will get a little nap in and the ECHO will go smoothly, OH BOY was i WRONG. You see you never know how someone will react to medications so we had no idea what we were in for. They give them 3 different medications to sedate them, the first one is just to calm him down and then the ones after that actually put him to sleep. When he felt the first one he got really funny and was actually giggling and thought it just felt funny. when they gave him the next 2 that were supposed to put him to sleep he all the sudden got really aggressive and mad, he actually stayed asleep for about 15 min, but the ECHO can take up to an hour. so he started waking up after only 15 min and i mean screaming his head off it was so traumatic for everybody, and at one point his oxygen got really low and he needed an oxygen mask. She even tried to give him the maximum dose she was allowed and it didn't do ANYTHING, he was still awake screaming his head off. finally at one point the lady performing the ECHO stopped and said she would go check with his cardiologist to see if she got all the images we needed so we could just be done. THANK GOD she got them so we then headed up to recovery. I thought once we were in recovery and got the IV out and we could hold him he would calm down, once again i was WRONG, we could not calm him down NOTHING was working this kid was PISSED. the poor thing even started throwing up, it was AWFUL. and to end the day we got bad news from the cardiologist. He has a condition called Coarctation of the aorta. Basically there is a part in his aorta that is narrow (almost a complete blockage) that is restricting blood flow to the rest of his body, so he needs surgery to widen this part so the blood can get to the rest of his body. If he doesn't get this surgery it is pretty much lethal. We know one thing he is getting some blood to the rest of his body because he has a pulse and decent blood pressure in his leg, so that tells the doctor its not a emergency surgery. So he will get the surgery within the next month and it is a 5-7 day stay at primary children's hospital. I just lost it and started bawling in front of the doctor, i could tell he felt really bad he just reassured me that he is going to be totally fine after this, and live a totally normal life and have no health problems from here on out. His heart was perfectly healthy it was only this one little narrow part in the aorta. so that was a relief, he said sometimes in these cases they will see problems with the heart.
 I still am trying to digest this news, it is so awful to know something is wrong with your baby, i just cant believe this is happening to us right now. We are home now and pax had some dinner and is in bed now doing much better. I just cant wait to get this behind us, honestly i would want the surgery done NOW just so we can get it over with. I will post when his surgery is scheduled once we find out. 
and i have no clue why the font changed all the sudden, sorry.