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!