Tuesday, December 28, 2010

I Have Nightmares

Last night, I had a horrible dream. It was happening. For some reason, we were outside, and when Maddox started to pass, I took him underwater with me and just held him close. For some reason in my dream, that was normal and thats what you were supposed to do when someone dies, was to take them underwater and just left them drift away. But then in my dream, he kept dying, then coming back to life, then dying, then coming back to life. It was torcher...

I am afraid that when we go home, I will always fear that he will die alone while he is sleeping and I will wake up one morning to his lifeless body. We talked to the doctors today about how he will go. The cardiologist said we will probably notice he will start breathing different and being more tired. She also said he might just go into cardiac arrest too though. Hopefully he wont go into cardiac arrest and that he will go slowly so I can hold him until his last breath. If he does go into cardiac arrest, they said I should just let him, do nothing. No compressions, no cpr, just let him go. If he goes slowly, his nurse will come and medicate him so he is in no pain and will go peacefully.

I still dont think it has fully hit me yet. When I am alone, I cant help but think about it and cry. I ache. My entire body aches. My face is swollen and hurts so bad. I would do anything if I could die too and be with him, but I cant. Unfortunately, I have to live until it is my time. I bet God will torcher me, and make me live until I am in my 90s...

I look at my son, and cant picture him not alive. It doesnt seem real yet. I try to stay positive but it is so hard. Knowing that my son will be in Heaven helps. But I am selfish and want him here with me so much more. If he was healthy, he would be so happy here with me. I love him so much. Love is such a simple, small, four letter word, but when I say it in my head, its like a loud, crying out, painfully strong word. LOVE, it HURTS. I dont think anyone could love anything more than I love my baby. He is everything to me. EVERYTHING. What will I do without him? The only thing that is keeping my going right now, is that he is still here and that when he is gone, we will meet again some day. That day, will be one glorious, happy day. I imagine the gates of Heaven opening, and Jesus greeting me with MY baby boy in his arms and handing him over to me. Once again, in slow motion. Everything is so much more beautiful in slow motion. My son smiles at me and I will hold him so closely and smell the smell that I already miss while he is still here. We will wander off together in Heaven and enjoy the rest of eternity, together.

My son and I are so into eachother, so in love. I can tell by the way he looks at me that he loves me and knows that I am his momma. When I feel his warm body, I know it will not always feel this way, and it kills me. The one thought I try to avoid most is his decaying body. It sickens me. I know it is not him, it is just his body but still. I MADE IT! He swam within me for 9+ months. This is one thing I will not think about from here on out. ever...

I just rubbed his head till he fell asleep. He is seriously the cutest little guy Ive ever seen. I love him so much it hurts. I dont know what I will do without him. Actually, I do know. I will go on with my life, I will keep his memory alive, I will work hard to do what I need to do in life and to help other parents who suffer from loss, and I will get a good job and do what makes me happy. Maddox would want me to be happy. I know that because he loves me, and before he got sick, I could get him to smile by smiling so big at him and laughing at him. My smile makes him smile and his smile makes me smile. We will enjoy the time he has here on earth, smiling and laughing with eachother. I will life a period of time without seeing his smile, but one day, I will see his smile again. That brings me some peace and comfort, that one day, we will be together again.

When I watch a movie or fall asleep, I go into a different place. Then when I wake up, I realize what is really going on. I forget that my son is very sick and dying, and it hits me hard all over again. Sometimes I think about it and feel like I cant handle it and that theres no way I will be able to live, but then I remember there are BILLIONS of people going through exactly what I am going through, and they are making it. It will be hard but I think I will be okay as long as I remember these things...

When Maddox passes away, I dont want to freak out. I feel like I will scream and cry. But I dont want it to go that way. I dont want to cry. I want it to be peaceful. I want him to cross over to the new world in silence. I want to be under control and comfortable with it. Sometimes, even just the thought of it makes me scream and cry, but thats why I am trying to prep myself. I know its coming, and I want it to be planned. I will talk more about my plan, not that it will go that way for sure, but if it does, I know how I want to do it. If not, thats okay too, he will be going to to the same place and feel the same love.

One more thing to clear up... Earlier, someone had said this to Ron... "If I were you, I would at least try the surgery because I wouldnt give up on my son"

First off, we are not giving up on our son. The doctors made it clear that Maddox will not survive surgery and will need echmo. They also made it clear that echmo may just hurt him more than help him. Echmo is way more complex and dangerous than it sounds.

2nd, if Maddox were to survive surgery and get off echmo, there would be WAY more surgerys. Surgery after surgery after surgery. He would need a liver transpant, which he is not a candidate for either because of his heart. Either way, he will live a short life, and as he gets older, he would start to itch and be completely miserable from all of these things. To me, that is not a good quality of life. I do not want my baby boy to suffer any longer! He has had enough and I dont want him to be cut open and sore for no reason. I think we can make the best out of the next few months he will have with us and then he will leave us to become an even more beautiful angel in Heaven. There, he will have no pain, no suffering, no surgerys, no tubes, no needles, no transplants. Only love. He will still feel our love and he will know that we will be together again one day.

I am going to stop here for now. At this moment my sweet boy is probably having a very good dream. I am looking over at him right now. He looks very peaceful. He feels our love and knows we are here for him and want what is best for him. Thank you all for the support. Good night.

My sweet boy, mommy knows whats best for you baby and mommy loves you so much. I am bawling right now but its only because I love you so much my little guy. Mommy will give you the best rest of your life that momma can okay? I love you so much and I cant help but cry because I will miss you so so much baby boy. I cant stand not being with you but momma will be okay and we will meet again. For now, we will love every second of each other. Baby boy you are so loved. SO SO SO SO loved. We will all be together again one day, I promise. Momma loved you from the day momma found out you were in my belly. Momma would always worry that she would lose you, and now it feels like she is, but momma is silly. You are in mommys heart always and forever bubba and right now you are with me and momma keeps thinking of when you will be gone. I am sorry for crying buddy but I just love you so much and will miss you so bad. Good night big man, thank you for being strong for mommy. I love you so much, mommys little soldier <3

Monday, December 27, 2010

our journey is already almost over

For some reason we really didnt understand the severity of our sons disease. The doctors would always ask "you know this is very huge surgery right?" and this one lady would always suggest that we should just not do anything. Then, one of the cardiologists finally sat down today and FULLY explained everything. They flat out said Maddox will probably not make it through this bypass surgery and probably will not be a candidate for echmo. Nor is he a candidate for a heart or liver transplant. They told us he has less than a 10% chance of surviving this surgery. I did not know this. I knew there were risks, but not this big of risks. Then they told us that we would be able to get him stable enough with medications, to be able to take him home for a few months, with 24 hour nursing care and he will be able to go peacefully at home with us, instead of him dying on the operating table or not being able to come off echmo if he was a candidate. Plus, all the risks that come along with echmo are just so much worse. We have not made it official but we are pretty sure we want to take him home and spend however much time we get with him at home. We probably wont be able to go on any vacations like we wanted or take him all the places we wanted to go with him but at least we will get some more time with him and be able to have the kind of passing we want him to have.

I am slowly coming to terms with this. Right now, I am not freaking out, which is why I am blogging now. All day I have been a wreck. They sat down and told us, and I just bawled and bawled and bawled. They called the Chaplin and I talked to her about what they will do with him and where he will go when he passes. I am content with where he will go and we have family in Heaven who will care for him. My dream of him laughing and playing with his cousin Nickolas, will probably go more like Nick pulling him in a wagon or something and making him laugh and taking him to go see Jesus. I picture that and it makes me feel so much better. My son, pain free, in loving arms, and happy. I know he will miss me, and I will miss him more than anything in this world,  but he will be taken care of and he wont have to suffer.

Even if the surgery would have gone okay and he would have recovered, he would still have more and more surgerys through out his life, he would start to itch miserably, and would just suffer more. As much as I want to try anything and everything to keep him here, keeping him here for him to suffer would be extremely selfish of me. We were thinking more about second opinions in other states, but then again, no matter what, he is going to suffer more and more surgerys, itching, and he still is not a candidate for transplant.

I can not wait to take him home. We will take bathes together every night, read stories, and do everything together and just make the best out of every day. I love my baby boy so much. He will always be my only baby. I cant even explain how much he means to me. He is everything to me. I deserved him and he deserved me. We are soul mates. I remember the first time I felt him kick. I was watching Twilight Eclipse and I was laying down, with my hand resting on my tummy, just waiting for it, then what do you know, I felt the tiniest little thump, and then ANOTHER ONE, and then ANOTHER ONE! I was home alone, so it was just a moment of silence where my heart melted and I fell in love. I fell in love with that tiny little foot that kicked within me. I loved being pregnant, as uncomfortable as it was and as bad as I wanted him here, I love knowing we were connected more than we will ever be.

As for breastfeeding, I will continue to pump. The doctor said he may be well enough to breastfeed once a day. All other feedings will go through his ng tube. Once a day is not much but I am so grateful for that. I will miss breastfeeding him so bad. I cant wait for his little suckle though! I hope he remembers how to do it. There is no closer connection outside of the womb, than when you breastfeed, and I will cherish every second of it.

I really want as much family and friends around as possible when he goes. I will want to be skin to skin with him and Ron and I will hold him together.  I want it to be in our bed and I want it to be quiet and peaceful. Earlier I asked questions like where he will go and what they will do with his little body. I learned that I can speak with the people who will take him to the funeral home, and if I dont like them, I can choose different ones. I want to choose the people who I feel will respect him and handle him as if he is still alive. He is my baby and needs to be handled with care, even if he is not alive. I have heard that the people who take the bodies away are rough with them and dont really care. I swear if I have the slightest suspision they will treat him like that I could slap them. I will make sure they understand that I want him handled very carefully and gentle and if I find out they are the slightest bit rough with him, I will find them and kill them, and I am so serious...

I have been thinking a lot about what he will wear for his service, and I found this beautiful little suit with a tie and shiny shoes. He will look handsome as ever and be buried with all his stuffed animals that will watch him while he sleeps.

I will still start scrap booking but I will probably wait to do it til after he passes. I will take TONS of pictures and videos and record everything in a notebook, that way when I start scrap booking I will still have all the information and photos I want, as if Id forget anything anyway. I just dont really want to waste time scrap booking when I could be spending my time with him.

As for school, I do online school anyway but I cant find motivation to do it right now and now that I know Maddox will not have long with us, I will just wait to work until he passes. Even after I dont know how I will concentrate or if I will even give a crap about school.

Every second hurts, and I have a constant head ache.  But I think I will handle everything as best as I can. I know whats best for my son and I know he will be safe. For right now, we will enjoy him while we can. I dont even think I will begin to try to explain how bad this hurts. There are no words. I can try but nothing will help anyone understand the FULL extent of pain a mother who has lost a child has.

I will blog a bit more later, I am SO tired and drained and today has been the hardest day of my life so far. My face hurts so bad. My body aches and I am just very weak and sleepy. I am not breaking down right now. I was all day but right now I am actually okay. If I do not reply to your calls or texts I am sorry, sometimes I just dont want to talk and dont want to be put in the awkward situation of you not knowing what to say. Again, please dont abandon me. I know when someone I know has experienced a death or someone is dying, I just try to avoid the subject or even them because I dont know what to say or do. Please dont do that to me. When Max passes I want to be able to talk about him and smile. I want to remember him and laugh cause he is so cute, not avoid the subject and hold it all in. When hes gone, the only bad thing now is that I will miss him terribly and that I will be broken. But he will be HAPPY and PAIN FREE and in the warmest, safest place he could possibly ever be, so whats so bad about that? I like looking at it that way, it makes it hurt less. I hate to just think of him as dead and gone. He is not, he is going to live on, laugh and play for eternity and one day I will hold him again, I will feed him again, I will kiss and hug him again, and THAT brings me so much comfort.

But for now, he is here, and I will love every second of it...

Thank you all for the support, we love you all!

Saturday, December 25, 2010

christmas eve/christmas day

It seems like I have been waiting forever for my family to get here tonight. I love when my family is here, especially my 2 year old little sister Peyton, or as I call her, "Lu Lu". hehe. Lu and I have a very special bond. I took care of her a lot and ever since Maddox came we havent got to be together very much. I felt very guilty about it because we were so close. She always knows how to make me smile. When Max got transferred to the NICU and we were up there for a month, Lu started misbehaving and acting out. I think it was because she missed me. Anway, I love that little girl to death. I miss her every day. Thinking about her makes me cry. Sometimes I feel like she is my daughter too. I love her like one, thats for damn sure.
Anyway, we decorated little guys room all nice. Its starting to get a little crowded though. I like having stuffed animals at the end of his crib. It makes me feel like they are watching over him while I go eat or sleep. He gets to wear his cute little Santa suit tomorrow! I am so excited, he is gonna look SOOO cute. I cant wait to open presents either. Hes got a TON of presents to open tomorrow too.

I was in a good mood all day until around 5pm. I havent really been thinking bad things and Ron and I were getting along for the most part until later. I wish I had somebody supportive around all the time. I havent been in love in so long and I just miss it. I know all I should be worrying about is my son right now, and I am but sometimes I wish there was someone who could make me laugh, hold me, kiss me, and just protect me. Not break me down. I forgot what true love feels like. The only true love I know is for my son and my family. Dont get me wrong, its not like I am saying that they arent enough, I just want a lover. Maybe if my baby boy could wake up I wouldnt feel this way. I know I wouldnt feel this way. For those two days Ron wasnt around and it was just me and my little guy at home, I was perfectly content. I didnt think about needing a man at all. me and him just played all day long together, loving every second of each other. I love my little guy so much. I am like bawling right now. I miss my little mans personality and his smell. Its hurting me really bad right now. My face hurts. Its like killing me but hopefully if everything goes well next week we will be home by February. HOME. That sounds amazing. My little boy will be awake and happy and playing. We will have the best couple of months ever...  (will continue later)
I had to stop this blog yesterday so now it is Christmas night. Maddox got TONS of presents. It hurt me really bad that he couldnt be awake and smiling at all of them but we will have to go over them all again when he gets better. I cant wait for him to start playing with them. He will love them all. Ron and I also got some really cool stuff. Its nice to know people care about us. We had fun with our families. My family is chaotic but its kind of a comforting chaos. Lu and I took a bath together this morning. Thats something I love to do with her and Max is play in the tub. Its kind of a bonding thing. When we were home I could never once get in the bath without Lu finding me and crawling in with me. As soon as she heard the water turn on, she would run upstairs and get in. I didnt mind though.
My siblings really bug me sometimes though. They are so ungrateful and can be real brats. It really pisses me off. We are so thankful for everything we have and to see them get upset because of something they got but didnt want makes me mad. They do this on a daily basis too. They are really spoiled and it just bugs me. They always have to have something. I think its cause we grew up having more than some but less than a lot. That still doesnt give them the right to act the way they do though. Thats why I want to parent so bad. I KNOW Id be a good one. Thats all I want. Ever since I was little Ive always wanted to be a mom. I know exactly how I want to parent and I know I will love it. I just hope Max makes it long enough to where I can parent him and show him things in life and to appreciate things. A lot of my parenting inspiration comes from my teacher. She is so great with her kids and I just really want to parent like her. Her kids are great and I want Maddox to grow up like them.
See, thats what I dont understand about God. Why take a child away from someone who is ready to be a parent? There are people who would rather party or who will mistreat or neglect their child, so why not save a child from that. Not STEAL a child who is in perfectly good hands, from a mother who loves him so so so so much. A mother who will love her child and show her child the right way best. A mother who would do ANYTHING for her child. I know I am young but I was beyond ready for my son. I did everything possible to educate myself. I did everything I was supposed to for my sons health. I enjoy every second with my son. I do everything thinking of him first. I can barely leave him for an hour without getting that overwhelming, painful feeling of missing him. Like just today at the Christmas dinner, we had to go over to the Ronald Mcdonald house to eat, and as I was making my plate of food, I had to go and sit back down because I just started bawling because I wanted him there so badly. There are moms in this PICU that go DAYS without coming to visit their children. So why take a child that is so ubelievable loved and NEEDED. I honestly do need my son. When I am not with him it physically hurts me. I say that all the time because it does. It hurts PHYSICALLY! My body aches for him. I just love my son so much and will never understand why he was chosen for this horrid disease. and I will forever be resentful. Sorry, but its inevitable, resentment...
Ron and I werent that bad today. We got along more towards the day. We put our differences aside to give Maddox the best Christmas we could. We even enjoyed eachother some parts of the day. Our relationship is so twisted. We cant stand eachother one minute, and then the next we are okay and laughing together. I dont think he truly understands me and my love for Maddox, but I know that he loves Maddox. He is a good dad and enjoys being one. We dont always get along but I will always know and say he loves his son, because he does...
Today I left dinner early because I was in a rush to see my baby boy. I was only away from him 20 minutes but I just felt this uncontrollable guilt for leaving his side at all on Christmas Day. I kissed him and then started tidying up his room. I seriously cleaned every cluttered corner out and made space for most of his stuffed animals, books, and toys. My mom got him this Beethoven CD so he now listens to it all the time. Classical music is supposed to make connections in the brain and can some how enhance intelligence. Since all he can really do is listen, this is a really good thing for him! He got SOO much cute stuff I dont even know where to begin. He was also dressed super cute! We couldnt get the car open to get his Santa suit we wanted him to wear but he had a few other cute ones so we put the one from our cousin Marcy on him and he still looked just as cute! He stunk up his Santa hat reaal good so now I can sleep with it and smell it all night. I have been waiting for him to stink something up with his old smell! I missed it SOO much. Makes me cry just thinking about it. Hospital linens make him smell completely different.
The day of his surgery is getting closer and closer. It will probably be Monday because the surgeon was talking with one of the other moms and told her that her sons surgery will probably be after another little boy in the PICUs. So she asked me if I had a baby in the PICU and I told her yes and that it was probably my son he was talking about. I am extremely nervous about it but I try to avoid the feelings. I am afraid something will not go right but I will not stress about it until they tell me something does not go right. It sickens my stomach to think about it but again, I am avoiding them well.

There is so much more to say, but to whoever is reading this, Merry Christmas to ALL and seriously THANK YOU ALL SO MUCH for the support, gifts, prayers, and love. We cant find the time to thank you all individually because there are just SO many people supporting us right now in every way but I do appreciate each and every one of you guys! We are EXTREMELY grateful for everyone out there for even just thinking about us! We are so blessed to have such awesome friends and family and we would really be lost without you all! Thanks again and Merry Christmas!

Tuesday, December 21, 2010

I knew it

I am starting to become more in tune with my gut feelings. I have developed some type of anxiety induced, amateur psychic intelligence. Like today, when we dropped my baby sister off at her baby sitters house before we left for the hospital, I had a weird feeling today was going to be horrible. and when I said good bye to her, I just got this overwhelming feeling and all I could do was sit there dumbfounded. Then what do you know, we blew a tire on the interstate and now we got this horrible news. My son will not even live a quarter of a full life. and the majority of it will require major surgerys and hospital stays.

The meeting started off okay, only because the GI doctor started first, and the liver is not the main issue right now. He just explained that every heart surgery will cause strain on the liver and so his liver will get worse with every surgery.  The heart is the main issue right now. His mitral valve especially. They are all just too small to function. They told us that he will probably not survive if we decided that we wanted them to try to repair the valves entirely first. It is just too difficult. But that he would survive longer if we did a temporary fix with artificial valves and some type of cap to cut off the two small valves and create a whole new route of blood. He will need more and more surgerys, but I  just want to keep him here as long as we can. At the most, they said kids with liver and congenital heart disease make it to 6 years old. That is no where near long enough for us. That is my baby. My only baby! I dont even want to think about it. We are just going to try to make the best out of his little life. We are going to do everything we can with him. I want him to experience as much as possible in these few years we have with him.

Towards the end of the meeting, I couldnt hold the tears in any longer. I tried so hard to focus on what they were saying, and not imagining my life without him. Finally, the meeting was over and my mom and I just broke down. I went and saw him and just broke down again, so I went to the bathroom and just sobbed for 20 minutes. It was a different kind of sob. The most helpless sound and feeling Ive ever felt. I felt like I could just die, right then and there in that bathroom. Being a mother is the only thing Ive ever felt so confident about. Ive never loved anything more. I never thought I could feel this much pain, and Ive said it before but its likie PHYSICAL PAIN.  My jaws cramp up and my finger tips hurt and my stomach hurts and I just want to die. The only reason I am not going to die is because I learned that when you kill yourself, you dont go to the same place. and the only reason I would do that is to be with my son, and if I couldnt be with my son then there is no point. In the future, I have a fear that when he passes I will go crazy. I feel like I would do things so I can die faster, like start smoking or be less careful or do drugs or something. I dont want to but I feel like thats what I would do. I do want to die faster  but I dont want to do it like that. But I just have a feeling I will,  and that I wont care. I want to do more research though on where I will go when I die. because if I need to make it to the celestial kingdom where my son will go, I need to be the best I can be so I can go there. I dont even know  what the criteria is for making it to the celestial kingdom. But I need to be there with my son. If I go to another kingdom, I need to know if I will be able to see my son still. I am afraid I have already done too many bad things to make it to the celestial kingdom anyway. I hardly have any knowledge about these kingdoms and how they work so I might even sound really stupid right now. This is just my understanding of them.

I have a dream that when my son passes, he will wave goodbye to me, my cousin Nickolas will be there to greet him and they will hold hands and take off laughing and playing in a field with lots of other children. This dream is a day dream and it goes in slow motion. That dreams makes me feel better.

In addition to my amateur psychic intelligence I spoke of previously, I was right about my son, I was right about my moms boyfriend Andy when he died. Just weeks before I was talking to my mom about how I had a bad feeling about him and that he was going to die soon. I can almost tell by just looking at someone. I probably sound crazy, but thats okay, I kinda am.

Right now, I am just trying not to think about when my son dies. It will be the most excruciating pain. I dont know what I will do, where I will go, or how I will handle it. But I guess when the time comes, whatever happens, happens. I am going to stop replaying my reaction, replaying his death scene, his funeral and everything, and am going to enjoy everything as much as possible. When he is healthy enough, we are going to do everything imaginable.There are no limits now and it is time to live spontaneously because now I am truly experiencing that life is WAY too short. This is it. This is the only time I will have with the most precious thing in the world to me. He is everything to me,  EVERYTHINGughh Im like breaking down again. I just dont understand, and sometimes when I think about it, I get very frustrated and grit my teeth. Almsot resentful at God or whoever did this to us. The big question for me is WHY and I type it so hard on the keyboard. W-H-Y! The one fucking thing that I love more than anything, I swear I would have given up everything for him. Right now I would do anything for him to be healthy. Anything! I would stab myself as many times as needed if it was just fix him!!!!!!!!!!! I cant handle it. I will be okay again in like 20minutes I just get these moments of unbearable pain and just i dont even know.sorrow. I guess. It just hurts. I dont understand and I never will. You can say just put it in Gods hands and pray but it already is and praying wont do anything because GOD is the one behind all of this!  and every other horrible thing that happens in this world! ugh Im sorry,  I just get these uncontrollable moments. I usually always ask for forgiveness because I sometimes say very hateful things to God, and I know thats not the way to the celestial kingdom with my son. I am already not following what I vowed to myself. I said I wasnt going to think about it but I am. I will start over and try again. He is here now and I need to be thankful for just today and not waste this time, this precious time.

I know I need to stop looking into the future  right now, but I am not sure if I will ever be able to have another child after this. The risk of losing another one is just too much for me. I could never love another child as much as I love Maddox. He is my baby. My only baby ever.  I dont want another one ever. He is mine and he will never be replaced, and I feel like if I have another baby in the future, I will not be able to love that baby as much and might even end up resenting the child. I love seeing other peoples babies though. It makes me happy to know that they wont have to suffer. One day Max will not have to suffer, it will be the worst day of my life, but there will also be some comfort  in knowing he isnt hurting anymore. He is healthy in heaven and his beautiful soul is living on and laughing and playing with my cousin Nickolas.

Wow so just 5 minutes ago, I asked if Max will ever have my milk again. The answer is no and for some reason this is hurting more than I thought it would. I cant stop crying. I want to feed him so badly. Maybe when he is healthy he can still just have little snacks from me. So I was keep just enough for him to have a little bit. I want to breastfeed so badly. It hurts so much.  I cant stop crying its just hurting me really bad. ugh this is just too much. I am going to lay down. good bye :*(

Monday, December 20, 2010

A Short Visit Home

So my mom stayed the night with us last night and so I decided to go back home with her for the night so I could visit and see my new niece Jennica.  She is SO sweet and small and it just made me really happy to see her. I wish I could help with her more but when Max gets healthy again, I will and they will be best friends. I am very glad I am friends with a lot of girls that have children Maddox's age, so he will have LOTS of friends and cousins to play with. 

Speaking of my baby boy, I miss him really bad right now. I found some of his old clothes that are still dirty from before we checked into the ER a month ago. I miss his old smell. He still smells sweet, it's just not my breastmilky breath smell. He also had a different kind of smell when he would sweat. Now he doesn't do much sweating and smells more like hospital.

I really miss his personality. He was SUCH A GOOD BABY! He was always so content and happy. Before he got sick, he had just started smiling like crazy! He was becoming more social and was on the verge of laughing! Each time he gets sick and has to stay in the hospital it sets him farther back in his development. But that's okay, we will work with him. My mom suggested letting him listen to classical music while he sleeps because it is supposed to create some type of connections in his brain. Not a bad idea since all he really can do is listen and sometimes look. He has lots of presents that I wish I could sit down and open with him on Christmas. We will still open them in front of him for him. I am very happy because my mom and siblings are coming up for Christmas so it will kinda be just like it would at home. He had the CUTEST Santa suit I wanted him to wear but I don't think he will be able to. Maybe we can put in on him for just a second to take a picture. 

Today another mom of an child with AGS added me on face book. I was extremely encouraged by her blog. Her son is now 7 years old with AGS and he looks great! He is SO similar to Maddox and it just gave me a lot of hope that I didn't know I had.

My "bad thoughts" are becoming less. Surprisingly. Sometimes I still picture his funeral through out the day, but I automatically block the thoughts out. That's one thought I do happen to get a lot though, is him at his wake. Sometimes I will be looking at him and he will not move, and I think if that's what he will look like and it always brings me to tears. I really can't help those thoughts. They always just pop up. But it's getting better. Another thought I have a lot, is when they come to tell me his surgery didn't go as planned. I imagine my reaction, what I will do, if I will want to be held by my family or not, if I will want to isolate myself, if I will freak out, or if I will not believe it. Will I want to see him? Could I handle seeing him? I think about what I will do when I go home without him. I don't think I would be able to leave his side. I think about what they will do with his little body. I couldn't leave his little body there alone, to where ever they take him. I just always think about these kind of things and I can't help it. I don't know if it's just my mind trying to get used to the idea or what. But it seriously, physically hurts me. Like it hurts me jaws, and it hurts my throat and stomach. If just the thoughts are doing this to me, I don't even know what I will do if it actually happens.

Enough with talking about that. Anyways, my milk is barely producing. I like only needing to pump twice a day, but I just can't seem to cut it off completely. My supply and all. I just can't do it. I don't want to. I really hate pumping, I would MUCH rather feed my baby skin to skin, but I can't. and I want to have a full supply if one day they say Max can feed off of me again. So I guess I will try to start getting my supply back up next week. I will enjoy this week, only pumping twice a day, and then next week I will start pumping every three hours again, even if nothing comes out. and it's going to suck lol. It's so much different then actually feeding your actual baby. I wish I could feed him so badly. I think about it soo much. It was just such a special thing to us. I guess I am being a drama queen about it. I just really really miss it. Like right now I am bawling just because I keep thinking about feeding him. At least I felt like my ugly, stretch marked,  uneven breasts were worth something when I fed him. Now they are pretty much worthless besides the 6 bottles of milk they pump a day...

 Anyways, I talked to Ron and I guess Max is doing a little better. For the past couple of days he has had loads of secretions because he got a bacterial infection from his breathing tube. They started another anti-biotic and I guess he has hardly coughed or had any stuff come up at all today. I hated seeing him cough. His whole face would turn red and he would squirm like he was just so uncomfortable and it just hurt me really bad to see that. I would get really bad sympathy pains and need to clear my own throat even if nothing was there, and it would make my chest hurt really bad and my whole body just tighten up. But good thing he is doing better! I miss him reaaallly bad so I think I am going to give the hospital a call so I will post more later.

Oh and as for the little boy I was talking about in prior posts. They finally pulled the plug. I hate walking by his room and seeing it empty. There has yet to be another patient in there. So it kinda gives you chills when you walk by. It's just too orderly and... empty...

Friday, December 17, 2010

Just to clear some things up/Max's life

The title of my blog is My AGS Son and Me, not because I always refer to my son as an alagille syndrome kid. It's so when another AGS parent goes to google their child's newly found disease, they will find me and be able to read my story and relate. You have no idea how much knowing that you aren't alone in this helps.

Now more about my son, he obviously has a disease called Alagille Syndrome. It affects his heart, kidneys, and liver mostly. He has stenosis of the aortic, mitral and pulmonary valves in heart. Which means those valves are extremely narrow, causing extreme amounts of pressure and obstruction. Which is very serious and they don't even know if they can do anything about it. His liver is HUGE and is full of billiruben, which makes his skin very yellow and his poop very dark. He has little to no bile ducts so the bile can not pass into the poop as well and fast as it should. He has a hypoplastic kidney and bladder reflux, so his pee splashes into his kidney which is small, so he is on an anti-biotic at all times to prevent infection. He is on countless medications. Actigall, By-cytra, Phenabarbatol, a multi-vitamin, Vitamin D, Iron, Atenolol, an anti-biotic, and right now he is on a temporary laxative and of course medication to make him asleep all the time because of the intubation.

When I was pregnant with him, on the ultrasound, they saw a few of these things but failed to tell me until the day I delivered. Yeah, I was pissed. My delivery was very hard on me. It was unorganized and rushed. Thanks to my nightmare of an OB/GYN.  Just a few hours after Maddox was delivered, the doctor came in and said they wanted to do an ultrasound on his kidney because it had been smaller in the ultrasound while he was in utero. I thought nothing of it because I and everyone in my family have always had perfect health and I guess I just took that for granted. I figured he'd be fine because nothing like that ever happens to us. They came back in and said he was going to be taken to Rockford because of his kidney, liver, and heart. All I could to was cry and cry. I had no idea anything was going to be wrong with him. It never crossed my mind. Luckily my doctor discharged me from the hospital just hours after giving birth so that I could drive to Rockford and be with my newborn son.

After getting the news that my son had problems, I immediately started blaming myself for smoking that one cigarette in my second trimester, or soaking in the hot tub for 5 minutes when I was 14 weeks pregnant. Little did I know, all these problems were possibly genetic. GENETIC. (We now know it was not genetic, but this what written when we thought it was) That word sunk deep in my mind. No one in mine or my son's father's family have any problems like this. and to think it could be MY fault. MY genes that is making my son suffer makes me sick. I would have never brought him here and made him suffer if I would of known I had bad genes. I would have been more careful. We still don't know if it is me or his dad Ron's genes.  But when we find out, we won't be having anymore children. If its me, I will get my tubes tied, and vice verse.  I would NEVER put another child through this...

So we left KSB hospital, the hospital I delivered at, to go to Rockford hospital to meet my son there.  I could barely walk, but I was eager to see my brand new son.  We got there and he was in a little plastic bassinet. He was only hooked up to the monitor at this time.  He didn't need oxygen or anything. He was doing great on his own. The only problem he had was eating. He couldn't drink from a bottle and I had yet to produce milk. So he had an ng tube in for a while, and then my milk came in after a week. I was SOO excited. Breastfeeding just seemed so natural and motherly. It was all I wanted and I tried damn hard to get that milk to come in! I would pump for 45 minutes at a time with just DROPS coming out. But it payed off. At first he could not latch because my breasts were so full and big. But after a few days they went down, and he latched PERFECTLY. Every time I breastfed from that point on, it melted my heart. I was feeding MY baby from a milk made just for him inside ME. I miss it so badly. Right now he can not be breastfed obviously because he is in a drug induced coma. He can't even get my pumped breast milk because it is too much work for his gut to digest. But hopefully he will be well enough to breast feed again. So I am only pumping twice a day now. I miss breastfeeding  SO bad. When I am alone and just get to thinking, I start thinking and imagining the sensation of breastfeeding. His little suckling. It sometimes tickled but I love the feeling. It didn't hurt. It felt natural. It gave us a connection again like we were when he was inside me. I miss it. Extremely bad. It makes me feel like my milk is worthless because he can't have it. Today I asked the nurse for more bottle to store my milk in, and she said, "you might want to ask if he will ever even be able to have breast milk again because if he can't, you might as well dry up and that might make you feel better." ARE YOU KIDDING ME!

Anyway, after a few days in Rockford, Max started having apnea spells. The scariest thing in the world. Apnea spells are where he stops breathing and turns grey and you have to either stimulate him by rubbing his back and lifting him up or by giving him oxygen. It got to the point where he was having them every 10 minutes. It's the worst feeling in the world. I was constantly on my toes, watching his stats on the monitor. If they even dropped to 90 I was up and already rubbing him. He had those for a week and then one day he didn't get one, and then another day passed without one, and then all of a sudden they disappeared. THANK GOD. The doctor said it was just a phase. But we went hope on an apnea monitor just to be safe, after four weeks at RMH. Going home was AWESOME. I loved being home with my baby, alone, doing what I want with him, without anyone watching or nurses coming to do rounds on him every couple of hours. He was ALL mine and I LOVED taking care of him. I didn't mind getting up in the middle of the night. It made me feel like he needed me, and I wanted him to need me so I could be there for him. I loved being in our own home, knowing I was his only care-giver and that he was doing just fine in my care only. We were taught how to put down the ng tube and did that every night for meds. It made me feel just as good and smart as the nurses.

After a few amazing weeks at home, Max started to have trouble breathing. I would count his respiratory rate to be 80 and you could see his chest contract and his entire diaphragm move. I took him to the hospital, thinking it was just constipation pressing up on his chest and that he would be fine. Little did I know, his condition had worsened. His weak heart could barely do its job. He needed to go back to Rockford. Where he did good for a week and then back to the respiratory distress. So they sent us to Hope Children's Hospital in Oak Lawn, Illinois, two hours from home.  The night we got here we got an awesome nurse and so I was happy with that.  He was doing okay on the oxygen and seemed fine.  Then the next day, the most horrible thing of all happened. I was just going to go play with him, when all of a sudden his heart rate went from 100 to 70 so fast, and kept going lower and lower and lower. The alarms sounded loudly and one of the top cardiologists happened to be by his room and came rushing in, yelling for help. He immediately started doing compressions and giving him oxygen. They called code blue on him and everyone came rushing in frantically.  I automatically assumed he was dying when I saw what they were doing to him. I ran out and started bawling and panicking. I kept asking them why is this happening and they didn't know at first. His heart was failing and I didn't know if he was gonna make it. I sat in a small, enclosed room, where the Chaplin was called to stay with me since none of my family was here at the time. I surely thought he was dead and I could not come to terms with it. Finally the doctor came in and told me he was in critical condition but stable for the moment being. They told me had had a tube in his mouth that helped him breath. I didn't want to go in there right away. I was afraid of seeing him like that. They had put a large amount of drugs into his system really fast so they could intubate him so he looked very out of it, limp and lifeless. When I finally decided to come and see him, they were lifting him up to change his sheets. His eyes were glazed over, his  pupils were dilated, and his body was limp. He didn't look alive and it scared me so I immediately left the room bawling. I came back and finally got used to seeing him like this. His eyes look normal now and he is more alert. He will be asleep most of the day but open his eyes for ten minute periods all through out the day. He has not coded since that time last week thank God. He was blessed by the Mormon missionaries and many people are saying prayers for him. Whether they will do good I don't know. I just want my little boy back. The cardiologists always seem very concerned. They always use very blunt terms with us and it can be overwhelming. For example today, one of the best cardiac surgeons in the world said to me, "we don't want to perform such a big surgery on his heart, if he is only going to live for three months to do his liver."  Just as an example. I'm sure he meant that as the worst case, but still. Anyway, that pretty much sums up our story until now. So I will post more later. There are so many more things I would like to cover. But I guess this is all for now.

Thursday, December 16, 2010


It is now 7:26pm, and I am trying very hard not to be nosy. The little boy two rooms down from us is either dying or has already passed. They had to pull the plug on him today. I saw his family breaking down. It hurt me really  bad. People are coming into the room so I will finish this blog later. I am very hurt and bothered by this...

In continuum, I guess they didn't pull the plug yet. It's 12/17/10. But they will soon. I am so afraid of making that kind of decision. I see my son, asleep most of the day. It hurts me. He is supposed to be laughing and playing and learning. I hope he hears my voice when I talk to him. Maybe he will dream of me saying what I am telling him in his ear. I know he loves me, I just hope he doesn't think this it's me doing this to him, or that I'm not protecting him. Yesterday someone told me that this could be the way that God wants me to come to him. What do they mean by me coming to him? Does he want me to go to church every Sunday? Does he want me to read the bible? What more does he want me to do? I believe, I told him I do. I've been praying. Does he want me to join a religion? How do I know which is the right one? What does he want me to do? I don't know if I even have the energy to indulge myself in a religion. I wish the psychic twins would message me back. They told me God is real, and that they are praying for me, but when I asked who will take care of my son in heaven, they didn't reply. So I sent it again, and still no reply. Are they testing me? Why would they not reply to that? It would make me feel better. Did they not want to break it to me that my son will be in heaven?


I decided to create a blog, so I don't dump everything on my facebook friends.  My mom brought me my laptop today so this is what I am doing with it. Ron's family is here so I will post more later. This may be a good way to talk about what is going on with me, and what goes on in my head, without overwhelming anyone. So that way, if someone wants to read what I post, they can go to my blog, knowing the things I will be talking about. Where as on facebook, one has to unwillingly see my post on their news feed. So yeah, this is it...