Monday, January 28, 2013

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.

Saturday, January 26, 2013

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

Friday, January 25, 2013

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.

Wednesday, January 23, 2013

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!

Sunday, January 20, 2013

a crazy few last day

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.

Tuesday, January 15, 2013

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!


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!

Sunday, January 13, 2013

January 13 2013

Have been spending most of the day with my baby boy i hate it how it is just a waiting game the days seem so long now. we were there this AM when the docs did their rounds this is where they go over everyhing about the baby what they are going to do what they have done and medications and all that good stuff. they were saying that they did not see a mass in the xrays they just did last night on his lungs, so now we are trying to figure out WHY he has the hydrops, and i found out they have still not pulled my labs from saint George that they did before the baby was born cause for some reason they could not get into the system, this could be the answer to everything that is going on with him so i am still really upset that they did not get the results right away, they say he could have gotten hydrops from some kind of an infection i had or a viral thing, i just want to know whats going on with him i am trying so hard to stay patient but it is so hard to stay patient when i have to go see my baby in pain. just be positive hope for the best and keep up the prayers. mommy and daddy love you Rayden.

Saturday, January 12, 2013

January 12th 2013

today we have spent a lot of time with our baby boy, it is so weird how different all the NICU people are some seem like they are trying to just prepare you for the worst and some want to make you think that he is doing really good  but from my understanding he is doing better, he is still really sick and in very critical condition, he is in a lot of pain and they have him on a lot of different medications so he does not feel any pain, and so he does not really move. he is on a lot of different machines and meds that are helping him stay alive and be stable, he has lost about 2 lbs he was born at 8 lbs and now he is 6 lbs and this is a good thing cause he needs to loose all that extra fluid in his bod they have tubes going into his chest and that is sucking the fluid out but the fluid in  his skin needs to come out on its own so he still looks really swollen in his face and arms and legs.i am still feeling really helpless and still in shock i wish i could have him in my arms i miss him being right in my tummy and now i am empty inside and he is struggling and there is nothing i can do but i love him so much and i am just praying and hoping he pulls threw this and is a healthy boy. they also did a bunch of test and xrays and ultrasounds of his body but i have no new information yet, i hope to find out more soon, it is hard to be patient but i know i have to be patient and just have faith that he will make it.

The Beginning

On January 9 2013  i went to the labor and delivery at 31 weeks pregnant with my baby boy Rayden cause i was having back pains and i had not felt him move in bout 2 weeks, and i just had that feeling that something was not right, when i got to the labor and delivery they started to monitor the baby his heart rate kept dropping off while they were monitoring him inside so they sent me for an ultrasound, and that is when i found out my baby boy was not okay he had a lot of swelling and a lot of extra fluid in his lungs, chest, around his heart, and in his abdomen and his head. He has very sever hydrops:( and he also has a big mass where one of his lungs should be. so they life flighted me to the university hospital in SLC, not to mention my husband was not here and i could not get a hold of him to get this information to him cause he was in a special training for the army so i had to contact red cross to get him home and let him know what was going on. the next day my husband flew into SLC from his training right in time he arrived at the hospital at about 5pm and rayden was born by emergency c section at 6:30 pm on January 10 2013, they took him right away to the NICU i did not get to see him, when he came out they had to get his heart started again cause it had stopped and they had to get him on a breathing machine and everything right away. he was born ten weeks early and he weighed 9lbs 3 oz cause of how much fluid he had all over him. I was not able to see him until later that night around 10pm when i got my feeling back in my legs, when i saw him for the first time it was a shock he was so big filled with all this fluid he was so swollen he didint even look like s baby i was still in shock cause everything had happened so fast i was still in denial that this was happening to us, and i still am in a way and all i do is ask WHY? why does he have to go threw all this pain, i feel so hopeless and bad there is nothing i can do for him to get better, i just have to sit there and hope that everyone in the hospital is doing all they can to help him it is out of my hands now. i am still in shock and don't know what to do or think. all we can do is be here for him and think positive!