Monday, February 25, 2013

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!

Friday, February 22, 2013

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...

Monday, February 18, 2013

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.

Wednesday, February 13, 2013

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.

Saturday, February 9, 2013


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. 

Wednesday, February 6, 2013

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.

Friday, February 1, 2013

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.!