back in SLC

so we got back to SLC today the weather is not as crazy as they made it seem all the roads were clear so it was a nice drive. we went and saw rayden he looks a little less swollen he is still really big but i will take what i can get rightnow. being home in STG was awesomr and horrible at the same time, i miss mu familu and friends but i cant stand being home empty handed looking at the basinet and all his littlr cloths it was hard. they are taking off his versed this is his sedation med so maybe he will open his eyes soon. i hope so anyways. dont forget the first event for rayden pn feb.23 get all your friends and fam to come out.

short trip

we got rayden a puppy to look over him while we are gone i already miss my baby boy so much. we are on the shuttle right now going to saint george for a few days to take care of a few things and to get my girls and bring them back to SLC with us. it feels like we have moved to SLC i hate not knowing how long we are going to have to stay. i do have to mention in this post that i might not have a whole lot of friends but the ones i do have are amazing big thank you to my friends and of course my amazing family and a huge thank you to the best neihhbors a person could jen & cam you guys are amazing. there is a fundraisers for my baby boy thanks to them and the vault  dance studio so for everyonr asking how they can help please watch on facebook and on here for upcoming events that are su  pporting baby rayden and get everone you know to come out and support them. as for rayden today he looks a lot more swollen his poor skin on his legs has started to split and the skin on his tummy is also cracking bluntly he looks like he is going to pop if he gets any bigger it kills me to see him so sick. he had more urine output then ever before today witch is great news cause that is the only way we are going to get rid of the fluid.the nurse told us that he is the sickest baby they have in the nicu:( that sucks. and when i asked her if she thought he was going to make it she said well he should have been dead at least twice now ,so i think he is a tough little fighter and he has a better chance then before. i just want to hear someone say he IS going to make it but i know relistically i wont here that for a long time

post surgey

well today Rayden looks a lot more swollen it is sad to see his little sad face he makes when he is in pain, he hates it when anyone touches him and expecally he hares it when they do his cares this is when they change all his bandages on his open wounds from his skin breaking cause it is stretching so much because of all the fluid. it breaks my heart i am not able to take his pain away. i love to spend all the time i can with him but the nurse told me she thinks it would be a good idea for me to go back home to saint George for a few days to take care of things at home, so we might be going back for a few days i cant stand the thought of leaving him but like the nurse said i better do it now so that when he needs me to feed him and hold him i will be there and to top off the last couple days we blew a tire. money we dont have. blah today jsd been stressful i counted his medication machines he has 13 machines giving him different meds its sad. i just hope he starts to improve and get smaller loose that swelling i cant handle seeimg him so swollen that his skin is breaking it kills me. but on a good note he is peeing more and he finally pooped.

CT Scan and Surgery!

before surgery(excuse my puffy face
 i had been crying all morning)

right before surgery

Right after his surgery!

so the days pretty much all blur into one i really thought today was Friday and then i was informed it is only Wednesday lol, but anyways so they took Rayden down for a CT Scan on Monday he really does not like to be moved  he a little more internal bleeding but it was nothing huge that they could not take care of, after they got the CT scan results they tried saying they could not see what they wanted and they would like to get a MRI but i did not agree cause every time they move him they just hurt him more, they wanted the CT so bad and they got it, now figure something out and get my baby the surgery he needs to help him start to heal, the next day on Tuesday<yesterday> the surgeon came in and talked to us she said they surgery needed to be now or never and asked us if we wanted to go ahead with  the surgery or if we just wanted to "let nature take its course" WTF is that supposed to mean i thought, we definitely chose to go ahead and try the surgery even though the surgeon expressed to me multiple times how risky it would be because of how sick he was and that she did not think he would be able to survive the surgery, so we went on with the surgery cause if i am speaking bluntly i would much rather loose him in surgery trying to fix the problem then just let him go without trying. so we went and sat in a family room and waited they had to do the surgery in his room cause he was not stable enough to moved down to the ER so they turned his room into a mini ER! the family room was right next to his room so you could hear every machine beep and almost everything they were saying, it was kinda scary but the wait seemed like forever even though the surgery only took about an hour, they knocked on the door came in and sat down and told us that HE MADE IT! we were so happy to hear this, the whole time they were doing the surgery all i could think about was how i never got to hear him cry, i never got to hold him and i never even got to see him open his eyes, but now i am hopeful that i will get all of this someday maybe not soon but i have a chance now and he has a chance at life, they said right when they removed the mass and clamped the artery his blood pressure, heart rate and oxygen shot back up they said it was amazing and not expected but they were very happy. Now we just need to wait and hope his kidneys start to produce more urine cause that is how he is going to loose the edema in his skin and the liquid inside. keeping our fingers crossed that we only go up hill from here, he is such a little fighter and i am already so proud to have such a strong little fighter as my son! I love you baby boy keep fighting so you can come home with mommy!

a crazy few last day

kisses:)

my poor baby all swollen again!:(

feeding the ducks with the girls!

so we got transferred over to primary children's hospital a few days ago and when they were moving my baby boy over to the other hospital he started to hemorrhage inside of his lungs so he is very unstable again, he is on double the meds and he is extremely swollen up again it is so sad to see my little baby like this, on Friday they were supposed to do surgery on him they had it all set up but i guess the surgeon came up and said that he did not fill comfortable doing the surgery cause he did not think Rayden would make it threw the surgery, the surgery is to remove the mass in his lungs and this should solve most all of his problems they are going to go in threw his side and cut threw his rib cage and remove the mass. they say now we will just need to take it day by day and see if he can get a little better so that the surgery is not so risky for him but if he gets worse they will go in and do it right away. this is the worst waiting game of my life i hate it i just want him to have the Surgery already so he can get better even though i am so scared for him to get it i know it is the only thing that will make him have a chance and help him get better! and yesterday Saturday he was stable all day but he is on a lot more stuff to help keep him that way, i just want to hold my baby love on him and kiss him but i know that cant happen for a long time. my girls are going back to STG today with my sister i am going to miss them lots but i need to  be able to go to the hospital lots and with them here i cant really go see Rayden that often, im sad but i know  they will be in good hands.

January 15 2013

(this is the doctors doing their rounds
discussing his care)

(taylee playing with the ducks)

(he looks better but i would give anythingto
switch him spots and him to be ok.)

so today has been a long one we went to the hospital early so that we could for sure be there when the doctors did their rounds this is where they all get to together and talk about how the baby is doing and what they think we need to do next, when we were there they said they wanted to take him off his heart meds and see how he did and also they want to order a CT scan cause that mass in his lungs is there after all and they want to see if surgery would be necessary so they need a CT scan. after they were done we stayed for a while longer and had to experience the scariest thing we saw one of his episodes when they took away his heart med it hurt him and he started to shut down i guess you could say, it was the scariest thing i have ever experienced. they put him back on his heart meds and after he got stabalized again i waited a while and then i left again so that we could take Taylee to a bird museum, i called and checked in on him every thirty minutes i swear. i went back around 5pm and the doc came in and told me that they are not going to be taking away those heart meds anytime soon and that they want to wait till next week to do a CT scan and possibly surgery on the mass. cause when they do the CT scan they have to put a color liquid in him thats not good for the kidneys and his are not super good right now so he wants him to be a little better before they put him threw that, more waiting i hope time will heal him! i love you baby boy keep fighting. i wish i could take your spot and you could be ok!

leaving

i snuck a photo of my favorite nurse!

i love holding his little hand:)

yesterday was crazy i was discharged from the hospital last night, leaving the hospital empty handed without my baby is the worst feeling even though my husband mom and Taylee were there i felt like i was all alone, and it did not make it any easier to leave knowing just a few hours earlier he had an episode where they had to turn all his settings oxygen meds all that to full blast cause he was having a hard time. and then i was brought to a weird place that was not my home, the Ronald McDonald house its ok but i am definetly going to need to get use to i\t. i miss my family but honestly even if they were here i dont know if i would notice much i felt like a different person like i have stepped out of my body and i am beside myself. this is the stuff you see on TV and think it could never happen to you, but i guess it can right. everyone wants to help and know what they can do and i appreciate everyone and everything but the only thing i want is for my baby to be ok and come home with me. i just want one nurse to tell me he is going to make it but they never do. but i do have a favorite NICU nurse now her name is heather i wish she could be the one with him all the time but i guess she has to go home sometimes to!