5 weeks

It has been a long time since i have done a post. Yesterday marked 5 weeks since Raydens passing it has been extremely hard I have been strong but I have also broken many times in the last 5 weeks. It is hard to still see photos of him and find little things of his from when he was here with us like I was cleaning out the couch and found one of his little shoes it makes me sad, and I always hear the maroon 5 song "daylight" almost every time I get in the car it comes on the radio. I miss rayden a lot I wish that he could be here with us I wish that I could see him grow up and have a life with us but I know that I cannot have that with him . Me and my husband have actually done a lot better than I expected us to, I think that we did a lot of are grieving before he was gone because we knew it was going to happen sooner than later. I am very happy to say that when we brought him home they said he would only be with us for a few days and he was home for exactly 4 weeks. I am thankful for every little second I got with him I wish that I could have more timr but I cannot change anything and I'm happy that I no longer have to see him suffering and in pain. My heart breaks because I feel like without him our family will never be complete. He was my only son and my precious baby it is hard yo express exactly how I feel. A lot of people ask if we will try for more kids and honestly I don't know I am extremely scared now I do not ever want to go through anything like this again but also I do not want to feel like I I am trying to replace rayden because no baby will ever be him. I am so thankful we got to bring him home so that everyone was able to meet him and he was able to be a part of our family and he will always have memories of home. Mommy loves you  rayden. I am missing you more everyday. Rest in peace baby boy. I know you are watching over us protecting us.

rayden has traded in his boxing gloves for angel wings!

my last moments holding him at home

MY FIGHTER!!!

As most of you already know Rayden  passed away Saturday morning at 5 am he traded his boxing gloves in for angel wings. It was a bittersweet thing when he passed away we are sad that we will no longer be able to love on him and watch him grow but at the same time we no longer have to see him struggle and be in pain. He went vary peacefully without seizures like the nurses anticipated but the last few days we had with him before he passed you could tell that his pain started to become more unbearable he started to need his morphine every 2 hours and he never seems to look as comfortable as he had before. we are having his services tomorrow Wednesday May 1st and it is going to be hard knowing I will never see his sweet face again. I would give anything to just be able to hold him again or feel his heart beat but at the same time I never have to see him in pain again. I miss him so much my heart feels like it is shattered into a billion little pieces but I know I can not bring him back but he will always be with me in spirit. I love and miss him so much and would do anything to be with him again. He is my angel and I am so blessed he was my son and he chose me as his mom.i am very honored to have been able to bring him home and share so much time with him he was so sweet and the cutest little angel  baby ever he put up such a good fight and i am happy he made it is long as he did i brought him home on a Saturday and he left us on a Saturday he was home with us exactly 4 weeks and i am going to cherish every moment of every day. i am going to remember every little smile and every time he opened his beautiful little eyes i am going to miss him but i know he will wait for me in heaven.

3 weeks and 2 days hom

 well it looks like I have been doing about one post per week sorry that I do not put more blog entries on. But really there is not much of a change he has been home now for three weeks and two days and he is doing as good as he can under these circumstances. He did just develop a cough and a fever these last few days it is so sad cause everytime he cough he cries and then if you cries he starts to cough even worse you can tell that it hurts him and it breaks my heart but all I can do is give him medicine to help his pain I wish there was more I could do for him but as we all know I cannot. They are doing a huge dance benefit concert for ryden on Monday May 6th it starts at 7 p.m. there will be food and a lot of live entertainment dancing and singers, and there will be a bake sale/silent auction in the lobby area the tickets are $8 at the door so if you are in town and have nothing to do we would extremely appreciated if you came and enjoyed his show and showed us your support. They only expected rayden to be here for about two weeks and he is still here so I am really hoping that he will make it until his show so that everyone there can meet him and see just how cute he is in person thank you all for the support please come to the benefit concert if you can they are selling Raydens fight t shirts and they also have wrist band bracelets so let me know if you would like to purchase anything thanks again and I will definitely update if anything big occurs.

home for 2 weeks and 2 days now!

SORRY I WROTE THIS BUT IT NEVER POSTED.........
well we have been home with rayden for 2 weeks and 2 days and he is still with us i am very thankful that i am able to spend a lot of time with him he is just so cute and both of my girls just love him. the hospice nurses come over every few days and they check on him they have told me the things to look out for so i will kind of know when the time is getting near but so far i have not seen the sighs thank goodness the only thing i have really noticed is that he gets irritable a lot easier now you can tell he is in pain and it breaks my heart we just take everything day by day and hope for as much time with him as we can get but also hope he does not have to suffer long, we love him so much it is getting harder and harder every day to imagine him not being her with me. i finally took him out of the house yesterday cause the girls really needed to get out so we  took them to the park and we went to wal mart grocery shopping he did well he just  slept the whole time. on that note i have hardly slept since he has been home i don't want to miss one little thing with him he is just so darn cute. he has had lots of visitors lately it is nice to see how many people care about him it is amazing how true the saying is that when something bad happens your true friends come out, thanks to everyone who has been here for us and supported us. and a big thank you to my neighbors jen and cam you guys rock they are always checking on me and making sure we are fed and have everything we need you guys are seriously such a big blessing also setting us up with the vault/kalamity dance group that has been doing a bunch of fundraiser events for us it has helped so much you guys have no clue how thankful we are to you all, and of course my whole family they rock. mt aunt came from California with my cousin it was awesome to see them i loved having them here. i know i have not been writing a lot but i really am just holding onto rayden every second that i can. love you all.

hes home

Well I I am going to make this short Raydon came home with us yesterday because we had a meeting on Thursday after my husband got home and the news was not so good we have decided to bring him home and let him spend his last few days with our whole family so that everyone can meet him. They do not know if it will be days or weeks but I am going to make every second with him the best moments of my life. Thank you everyone for reading we love you all and we hope your havin Happy Easter I know mine will be the best 1 ever.

crib

Well Rayden finally got out of the heated hospital bed today he is now an a baby crib because he is maintaining his temperature on his own tomorrow we have a big meeting with the doctors his nurses and the neurologist and all the other people that have invested time in his care. I am excited because I want to know exactly what they think the outcome for his future is going to be and to get multiple peoples opinions on his future I will keep everyone updated thank you all love you and keep up the prayers they are much appreciated.

raydens update

well I have not written in a few days because my mom brought my girls up to Salt Lake for the weekend and I just spent time with them and of course rayden to.  we had a nice weekend I love seeing my girls. But anyways Rayden is doing very good without his breathing machine he is still on a thing that goes in his nose and it helps with oxygen and it also helps to keep his lungs open but they are slowly going to wean him off of that just to be safe, then he will just go to oxygen but when he gets off of this one then he can start to try eating from a bottle I really hope he learns fast and does really good cause he is already taking a binky and he loves it. He also loves to be wrapped up in a blankie it helps him feel comfort. They did a head ultrasound today to see what is going on with the fluid and they said that they still need to continue to tap and take fluid off once a day because his ventricles are still very enlarged. I am hoping that they will figure something out with the shunt soon so that we can just get it over with if he is going to need it But is going to suck because when he goes down for any surgery they have to re intabate him with his breathing machine cuz he will be put to sleep and it is just safer that way, I don't want them to Wait any longer than they need to tho cause I don't want anything to get worse. I love that I have been able to sit up at the hospital with rayden almost all day everyday and have quality time because on Monday I have to go back to saint George for the week and only be here weekends cause I miss my girls and they know I am gone and they need me, also my husband will have to go back to work. my mom and dad are taking care of my girls back in Saint George I am so lucky to have such great parents I love them so much I do not know what I would do without their support. I am just hoping that rayden gets to come home sooner than later but they still have not told me any potential dates, but I hope its soon because it is really hard to try to be in 2 places at once. Thanks to everyone who came out to Raydens yard sale I heard it was a big success thank you everybody for your kind words and support keep up the prayers love you all. O ya my husband comes home in 2 days I am so excited this has been a long 5 weeks:)

breathing machine

well it's been a few days since I have written but not too much is going on we are still taking it day by day and hoping for the best. about the DNR I talked to my husband and we are most likely going to sign 1 when he comes home next Wednesday but we are going to specify it so that it will only be if his heart were to stop then they would let him go and not be really aggressive because in my mind he has not had many problems with his heart so if it were to stop I feel like that is his way of telling me that he is ready to go to heaven. But on a good note they are going to try and take him off his breathing machine today at 3 o'clock I am extremely nervous but at the same time super excited I just really hope that he is able to tolerate it. I am so excited that I might be able to hear his little voice for the first time today even though it will most likely be a cry I am still really excited. People ask me how I am NOT a complete mess everyday but I just say for those of you wondering this question if tomorrow were to be my last day with him I do not want to remember it being super stressed out and crying all the time I want to remember being happy with him and just loving him as much as I can. thank you For all caring and staying updated with little rayden  I will keep you updated on the breathing later today. oh yeah and I forgot physical therapy started coming by and working with rayden todaay they can'T do much but I feel it will still be helpful in the long run the earlier we start with physical therapy:) Rayden has fought so hard to be with us and I am NOT going to give up on him we will learn new things and we will work through whatever comes along our path and hope for the best.

some video of my cute little man!

Rayden trying to open his eyes and wake up he is till on a lot of pain medications, but i think he is just so cute

ignore my voice eww!!!

My baby boy I love him so much

it is sad to see his little cry face but so cute at the same time i had to record it

you cant hear him cry cause he is on the breathing machine and the tube goes right in between his vocal cord but he defiantly has emotion and can cry

he is just to cute!!

hydrocephalus!:(

as you already know Rayden has hydrocephalus (fluid  build up in his brain). the doctor came into talk to me last night while i was with Rayden and showed me the CT and MRI scans of his brain, his brain is filled with liquid and the doctor says they are doing what they can but they are scared they will not be able to get that brain tissue back cause it is so damaged cause of the fluid and he is pretty sure Rayden is going to have a bad outcome in life like he wont talk, walk, feed himself non of those things, it breaks my heart to think of him having to live a life like that. the doctors want me and Chris to sign a DNR (do not resesitate) they say his quality of life is going to be poor and i am really just stuck i do not know what to do or think right now it's so hard being alone not having Chris to talk to in a time like this i want to know how he feels about it cause i honestly have no idea what he is going to think on this! i do not want to loose my son i love hi with all my heart it is unbearable to think about loosing him not having him in my life but if he is not going to be able to move or do anything i cant imagine putting him threw that either, i am stuck i wish they could tell me 100% what his outcome is going to be, and its also hard cause i have researched and read so many stories similar and the kids are fine now when the doc told the the same thing. I am stuck i wish i had super powers right now so i could see the future for him!

YARD/BAKE SALE MARCH 23

YARD/BAKE SALE COME OUT AND SUPPORT IF YOU CAN IT IS VERY MUCH APPRECIATED!!!! IF YOU HAVE ANYTHING TO DONATE OR WANT O BAKE SOMETHING CONTACT Tia Stokes @ 435-216-8974!

I love my little man!!!

his tube

 
 
seeing Rayden yesterday was amazing and being able to hold him was even better i love him so much! so he is doing alright we just take it day by day he had his tube put in and they want to convert it into a shunt in the next two weeks sometime but he had to much fluid in his abdomen to do the shunt on Monday so they will just wait and see. the nurse also told me that they tested for the 3mcc again and it came back negative but they want to do one more test to be sure he does not have it but they want to wait 160 days to test again cause they don't want his blood transfusion he got on Monday to mess with the results. the cut on his head where they put the tube is bigger then i thought it would be it makes me sad to see all these places my baby boy has been cut into! his oxygen needs have been GREAT but his other ventilator settings are on the high side so we just need to be patient and hope he can get off the ventilator soon. they also switched all his meds over to oral meds so they are not going threw the pic he has anymore only his antibiotic for his meningitis is going threw his pic so that is awesome. he is improving little day by day and that's all we can ask of him he has made it this far and i am so proud that he is my son. they said he will most likely not be home till this summer and that sucks really bad it feels like forever away like he is never going to get out of the hospital its sooo hard! but i guess i need to just be patient(and that's really hard for me). thank you all for you support as many of you know there is another yard sale on March 23. please come out and support if you can!

Raydens head surgery!

well they told me that they were going to wait till April to do the tube placement in his brain but they called me Monday mourning and said that they were going to do it so i had to give consent over the phone, it is really hard to give consent over the phone cause what if something happened and i was 4 hours away from him it would kill me, but at the same time i know that he needs it and i don't want to wait any longer because the fluid build up was already causing break down on his brain, and that is defiantly not good and we don't need any more problems then we already have, they only placed the tube for now cause he is swollen still so within the next two weeks sometime they want go in and place a shunt and that is something he will have permanently for life. i am going to go back up to SLC any day now but i called and cant get into the McDonald house today but hopefully tomorrow i am going to miss my girls a lot but i know Rayden needs me really bad, and i miss him a lot. Chris comes home in 2 weeks i cant wait it sucks not being able to talk to him ever with all that's going on we only talk about 1 day a week he does not even know that they did his head surgery:( its hard feeling like i am all alone but you defiantly figure out who really cares and who is really there for you in situations like these. they also have to do another eye surgery(#3) cause his eyes are not getting better i really hope he does not end up being blind! but i will keep you all updated when there are updates! crazy fact my due date was yesterday!i hope he can come home soon i want my baby boy home!

update!

just a little update for everyone Rayden is doing OK we are just taking it day by day they tried to go down on his ventilator settings day  before yesterday but he did not like that to much so they had to go back up and they actually had to go back up more then he was before they tried bringing it down but they said not to worry cause it is not uncommon for babies to do that! also they had to start him back on his diuretics to help him pee off the fluid better cause he is starting to gain weight and retain fluid a little bit but they also said that is normal for him considering how sick he is! they said he will most likely come home on those diuretics. but other then that it is all the same they are treating his meningitis and then after the six week treatment is over in the begging of April then they are going to put the tube or shunt in his head as long as he does not show anymore signs of infection i am home till Wednesday then i will head back up to salt lake by myself i am going to miss my girls a lot but my dad will be staying at my house to take care of all of them so i know they will be safe and cared for and Rayden needs me to i cant wait to get back up there and see him i miss him so much!! everyone keep your fingers crossed and pray nothing else goes wrong my poor little buddy does not seem to be able to catch a break, i wish there was more i could do for him. love you all and thanks for the support!!

Quick little update

so they did the CT scan of his brain and they did not find any abscess thank god but they did see that due to the extra fluid he has in the head it is putting to much pressure on the brain and is starting to cause brain break down, but they can not put in the shunt until his meningitis is under control and they are going to be treating it for 6 weeks but they believe they will need to do something before the 6 weeks is up, they are going to talk to surgery to see what options they have to get rid of some of this fluid to relieve some of the pressure. I hope they can figure out something soon so he does not have more damage done to him!

thank you everyone and please keep praying for my baby boy they are much needed and extremely appreciated!!!

is it ever going to stop!! meningitis

My perfect little angel!

The nurse is an artist! 

he is so small now compared
to when he was born he is
5lbs 9oz now

I hate getting all this bad news and it has to happen right when i come home, the last few days they have been trying to attempt a spinal tap to get spinal fluid to test for meningitis but rayden could not tolerate being turned on his side and put into a C shape so they said they were not going to attempt again for a few days so that mourning i drove back to saint george and of course right as i am pulling up to my house the nurse practitioner calls and informs me that they did the spinal tap and the results came back and he has meningitis it is an infection in the brain and it is a serious condition, i am so heart broken for him i don't want him to be in all this pain it kills me that i can not have a magic wand or a genii to grant me a wish, i would love to take away all his problems and for him to just be healthy and come home. they took him down for a CT scan of his brain this mourning they are looking to see if there are any abscess in his brain, cause they explained to me what happens is if there is an abscess then the white blood cells go and attack it but they also kill off the part of the brain that the abscess was on so it causes damage to him, the type of damage depends on where in the brain the abscess is at. they just took him down so i will not have the results till later today i am trying to stay strong but i just feel like we finally start to do a little better and then BOOM we are hit with another serious problem, i dont know what to do how much can you push a person before they fall. Of course i dont wish this upon anyone but i wish i could talk to someone who knows exactly how i feel, it is so hard to know what is the right thing to do, it is so hard to stay up in salt lake when i know the girls do not like it there but i dont want to be away from them since chris has already left for his training till the end of march, but i dont want to sit at home so far away from my baby either, i am torn. and my heart hurts for rayden i dont want him to have to have long term issues and they are pretty sure he will, my heart hurts for him i mean i am ready for any challenge life gives me but i dont want to have to see him go threw life "special" cause there are so many mean people out there, and i dont ever want to see my baby hurt or made fun of. i dont know what to think i am hoping for the best and expecting the worst i guess, sorry i am venting but it is the only way i let it out cause i have a hard time expressing myself when i am talking to someone face to face without breaking down, i am strong and i have been strong but i just want the problems to stop i know they will not dissapere and i can not chasnge  anything and i did not cause any of this but it is still hard as a parent to see this happen to your precious baby and not think i wonder if i would have done something different? i am still taking all this in and trying to organize myself i guess, i will update everyone with results! thanks for all the supporters and prayers they are much needed and appreciated!

holding him and new head information.

well as a lot of you know i got to hold Rayden for the first time last night it was amazing, so worth the wait. it was really scary at first cause of how many people had to be there to get him situated just so i could hold him and as they picked him up to hand him to me his heart rate dropped really bad but once he was in my arms and he was comfortable his heart rate was actually better then it was before, it was amazing.... when i walked in his new room for the first time cause they moved him while i was gone i could hardly even recognize him he looks so much better every part of his body looks good he weights 5lbs 9 oz now so he has lost a lot of fluid he is so small and cute and perfect i just love him so much. the nurse finally told me she thinks he is past that hump and that he is going to make it, now we just have to worry about what the long term problems will be, i am so happy. also one thing that scared me when i saw him is that the top of his head seems so big but it is because of all that fluid build up in is head, its scary i hope they do something about it soon cause i don't want it to cause him anymore problems then he already has, but he also has an infection and they said they can not do anything further until his infection is under control i hope it gets under control soon though, they are going to put either a tube in or a permanent shunt in that he will have for the rest of his life but they are still discussing it. they also said that they might be able to transfer him to saint george NICU soon after he gets his head stuff under control. if they put in the tube they want him to stay up here for a while so that they can test it and make sure it is draining properly just in case they would have to move to a shunt. i don't know but i hope they figure it out soon him being in STG would be 100 time easier.

i love him so much and i cant wait to bring him home one day!

eye surgery!

a lot has been going on i am in still in Saint  George cause they do not have any opening at the Ronald McDonald house and there is a really bad storm up in SLC right now so i don't want to drive the car up there int hat weather, and i do not have the extra money to spend on a hotel and gas for the SUV so i guess i have to wait till Sunday when the storm passes and hope that place has a room open then, even though i hate it so bad and i am so depressed here at my house it is hard to be here and not have him with me, also on top of it Chris has left for his 5 week training it sucks i hate being alone but we need the extra money so he had to go. but anyways about baby Rayden he is doing good on his new ventilator i am happy about that, but he is  having surgery on his eyes as i am typing this i am really sad i am not there with him for this surgery i know he is taken care of up there but i still wish i was there to comfort him, he is having laser surgery on his eyes cause something is not forming right i don't really understand it 100% but they say if they don't do it there is a chance he can go blind so i defiantly want to prevent that if i can! also he needs to get that tube put in his head to drain the fluid in there and they want to do that A.S.A.P but right now they cant do it cause he has an infection and if they do that surgery there is a high chance the infection could spread to his brain and we defiantly do not need that happening, so they are going to wait till his infection is under control and then put the tube in right away. they also had to give him a new feeding tube that goes threw his nose right into his intestine yesterday cause he was throwing up his feedings again, i feel so bad for him that he has to go threw all these things, i miss him so bad i am just broken i feel like i have tried to stay strong this whole time but Chris leaving just broke me. i hope my poor little man starts to get better soon and he stops having all these problems i want to bring him home so bad even though i know it wont be for a while, i just miss him and i am turning into a mess...

good and bad news

well a lot has happened this week i came home to saint george on Friday cause we had some things we need to take care of and we are still here i miss my baby so much but anyways some good and bad things are going on with Rayden lets start with the good stuff, he got switched from his full support ventilator to a ventilator that only helps him as he needs help breathing and the nurse said it is set to make sure that he takes 32 breaths per minute and he is doing 36 on his own so he has not needed to much but they also took him off his morphine and that helped a lot with his breathing, also they took out the pick line in his leg where the blood clot is the blood clot did not break off and flout anywhere and that is awesome, but it sucks it did not come out with the pick line like we thought it would so now we still have to worry about it:( and also they said he has been awake a lot more awesome now when i get back he will not be sleeping all the time and i will also be able to hold him for the first time :) i am a little mad this is all happening while i am not there it makes me sad they told me they were not going to try to switch breathing machines till later this week and the day after i left they did it, i cant complain cause i am happy he is doing so good on this new ventilator i am just sad i am missing it all.  now the bad news so i was talking about his brain in the last post  well there are 4 brain cavity's 2 of his are really swollen with spinal fluid cause he has a clot in there that is blocking the flow form the spine, last Monday they checked them and said they will check them again today to see if they get any bigger and they did get bigger so now they need to discuss what they think they need to do, they can either wait and watch them another week to see what happens, or they can surgically put in a tube to try and drain it slowly, or they can surgically put in a thing called a shunt it goes from the brain down the spine into the abdomen and drains the fluid right to the abdomen, this one would be a more permanent thing that he comes home with when that time comes. also the clot in his leg did not come out with the pick line like we all hoped it would and this one has also grown in size since last weeks scan on Monday but he is not a candidate for the blood thinner medicine to try to break it up cause he has already had bleeding in the head and this medicine could make it worse so they also need to make a decision of what they want to do with that one to. but i really hope from now on he just gets better, and he can come home soon i cant wait to hold him and love on him.

His Brain.

my handsome baby boy!

this is his poor little foot but it
actually looks better then it ever has

the last few days have been a little crazy i guess i  say that in every post. lol but that's just my life right night crazy. Rayden is looking cute but he is still really sick they  did a scan of his brain and they found  2 holes in his brain, the doctor said this puts him a great risk of having motor skill disabilities ( the doc said he is not saying he is going to have them he is just informing n us that  he could. he also has a blood clot in his brain cavity, they said they are not going to do anything about it right now they are going to check it again on Monday and make sure it does not get bigger and if it does get bigger they will have to consult with surgery about putting a tube in his head to drain the clot out.  i feel like every time they do a scan they find a new problem and that's good that they are finding the problems i just really wish we could here something positive for once. the nurse also told us that the earliest she sees us going home if he does good is MAY! and thats also depending if i am willing to take him home with some of his equipment. that is so far away i dont want to wait that long, that's not till this summer that's forever away, i just hope that we are done finding problems they can treat the ones he has and he can be ok and he can do things fast and come home soon, i want to hold him it feels like the day will never come. he also has a blood clot in his artery right by his liver they do not know how they are going to treat that yet cause all the things they usually treat clots with, the doctors think will be to hard for him, and they don't want to penetrate his skin with and needles cause they dont think the meds will even get to the clot they think it will just leak right out with all his access fluid. i dont know i hope they come up with a plan today cause this is a very dangerous situation if this clot breaks loose and flouts anywhere and blocks off a main artery it could kill him instantly( doctors  words) so they dont want to take this lightly but they also dont want to do anything that is going to cause him a lot more problems, everything is so up and down all the time. i just want him  to  be ok and come home with me. i love him so much.

YARD SALE IN 2 WEEKS TELL EVERYONE YOU KNOW!

Here is all the information you might need!

roller coaster ride.3-MCC Disorder

his battle wound from surgery
it goes around to his mid back

well Rayden is looking a little more puffy over the last few days then he has been, they tested him for infection but they did not see anything, so they called infection control, they want a xray of his abdomen to make sure there is no pockets of fluid built up, if there is the will insert a needle into his abdomen and suck it out, and if there isn't then we keep searching for why he is a little puffier the last few days. we also found out one of the many long term issues he is going to have he has a rare thing called 3-MCC disorder  its an inherited disorder in which the body is unable to process certain proteins properly. People with this disorder have a shortage of an enzyme that helps break down proteins containing a particular building block (amino acid) called leucine. this condition, which can range from mild to life-threatening, include feeding difficulties, recurrent episodes of vomiting and diarrhea, excessive tiredness, and weak muscle tone. If untreated, this disorder can lead to delayed development, seizures, and coma. Many of these complications can be prevented with early detection and lifelong management with a low-protein diet and appropriate supplements.this happens to 1 in 36000 babies so of course it happens to him right. but anyways i am sure this is just one of the many things we will have to deal with threw his life, i feel so bad all this is happening to him i wish i could stop these bad things from happening but unfortunately i am no super women, i wish i was though. but he is still overall better then he was before even if he is a little more puffy then a few days ago i just hope they can find out why he is getting a little bigger and turn it around before it gets worse. other then that nothing has really changed just waiting to see if he has any pockets of fluid built up in the x ray. 

looking in his little eyes

well its been a few days since i have done a post rayden is starting to look like a real baby now. we drove down to st george on monday feb 4 to suprise my sis amanda for her birthday and then we took care of a bunch of stuff while we were there. chris is going to have to leave soon to go back to his army training so i am trying to figure out what the best thing for me to do is while he is gone. while we were in st george rayden spiked a fever of 102 they pulled a bunch of labs and they came back negitive that means he does not have an infection so thats really good, but he is doing a lot better today no fever. the most exciting thing about today is i got to see him open his eyss today for the first time, i am a little mad at myself for not taking a picture:( but i was way to excited to see his little eyes and i spaced it. he looks so cute with hid little eyes open he rarley opens them cause he is so sadated and you can tell it is hard for him to open them and keep them open but the nurse said that when he opened them for me it is by far thr longest he has kept them open it was the cutest thing hr just sat and stared at me. this has definetly made me open my eyes and relize the things you take for granit like them being awake, breathing, looking at you, and just being healthy. they are going to take his last chest tube out today and then his surgery staples today and if not today then tomorrow, that will be one step closer to me holding him i cant wait for that day to come.

A few steps at a time.

hos first feeding.

well i have not written in a few days but they have pretty much been the same. He got one of his chest tubes out cause it stopped draining now only two more to go but they said when all his chest tubes are out i can hold him, i know its not going to be for a few more weeks but now at least i have something to look forward to. they have also took away one of his machines the nitric machine, that's one less machine he is on still a long ways to go but he is getting there, they say we are still not out of the woods with him but he is getting better then he was he is making steps in the right direction. also a big thing they did yesterday is they started to feed him breast milk he only gets a tiny bit every six hours cause they need to see if his body can handle it, i really hope his body does good with it cause i don't want to take any steps back. but other then these changes nothing really new he looks a lot better now, he has a lot less swelling and he has went from 9lbs to 7lbs in the last few days he still has a lot of fluid to loose but it is getting there. i really just want my baby to make i can not wait till he opens his eyes for the first time i hope i am there to see it, i don't want to miss anything. my  mom and sister are coming down today i cant wait to see my family and also for them to see how much he has changed, also i am excited my mom will be here to help with the girls cause i  have hardly got to spend any time at the hospital since we brought the girls up here i love having them here with me but it is sooooo hard to be at the hospital with Rayden. Chris is going to have to go back to saint George soon to go back to work i am going to have my dad come here and he me with the girls as long as he can handle it and then i don't know what i am going to do i really hate being up in SLC i am torn i don't know what i should do.!

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!