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Saturday, February 26, 2011

Brothers and Sisters......

So my best friend whom I also consider like a sister flew in at the beginning of the week to help out. It was so good to see her and then I got an even bigger surprise. My Mom decided to fly back to be with us and she brought the whole crew with her, ALL four of my brothers and sisters!!!!!!!! They all wanted to meet Thurston and be with us. They are only able to stay for a day and a half. I cant even believe that they all did this. They are the BEST siblings I could ever ask for and reaffirms over and over again why I wanted to have Thurston, why I wanted Viola to have a sibling to grow up with and to have a whole lifetime of love, support, and understanding. I am so lucky to have the best family ever. My pops is also coming out at some point but is getting over an illness. He calls me all of the time and checks up on me. Family is everything to me and without them I would be completely lost. Sure we fight, disagree sometimes, have different politics, even religions(or lack thereof) but ultimately the one thing we will always always have is each other, and that is what family is all about.............Love you guys!!!!!!

Sunday, February 20, 2011

holy shit!!!

Ok I just wanted to clarify that after some of the responses that we are NOT I repeat NOT pulling any plugs on our son. I guess when I was writing it came off like that was a choice we might make but we would only even consider doing something like that if he was down for the count, starting really desaturating like crazy for hours with no hope of getting back up, not able to resusitate etc. Like a DIRE situation. Trust me its not like we are walking in looking at our kicky smiley happy kid going, "hmmm should we pull the plug today or not". I know it is so hard to convey what the hell is going on in a blog and especially when my emotions are beside themselves but anyway, just wanted to make sure all of you knew that unless something really really reallly really really bad happens, obviously we are not doing anything and we are still in the meantime trying to find answers. I am SO SO SO sorry for the confusion. I guess it is similar for someone to tell you they had stage 5 cancer, I mean your not going to go in and suffocate them or something, you are just going to maybe try some of the treatments and hope for the best even though the odds are stacked against you, but know that the chances dont look so hot and then if and when you go hope it is peaceful surrounded by loved ones........ok now you know!!!!!

Friday, February 18, 2011

Hope floats........away.

In the last year I have been the parent of a preemie. I then had to transition into being a parent with a child who has a chronic health condition. Now unfortunately I must transition once again into a parent of a child with a terminal illness............

The sheer and utter irony that all of you will be blown away by by what I am about to regale you with may knock you cold on the floor. The utter sadness and devastation you will feel will leave you there lifeless as it has me Chad and Viola.

Last year on February 17th, 2010 we had one of the toughest decisions to make regarding the fate of Thurston. It is the very day that they told us that Thurston was not going to make it out of the womb and that we could either induce him and get him out to end his suffering, or go home and wait for him to die inside me, I remember staying up the entire night trying to make such a horrible decision:

"They went over our options. We could induce him, and get him out, or we could go home and wait for him to die. WHAT THE FUCK KIND OF OPTIONS ARE THOSE.....I thought to myself. I wasnt sure if I could handle the pain of carrying him around inside me, everyone asking me the proverbial onslaught of pregnancy questions "hows the pregnancy going", "how many weeks are you now", "is it a boy or a girl". I thought I would tell them to all Fuck off. I thought a lot of things. Chad and I tried to mull it over, how the hell do you mull something like this over."

Yesterday, February 17th 2011, ironically and tragically to the day, we were given those same options at the care meeting. They told us that by now the trach should have given him the support he needed to start growing. He should not be having these continual episodes. They told us that they now know his Pulmonary Hypertension and lung disease is irreversible, that his lungs are not growing and are too far damaged to fix. ...meaning there is no cure, no going back, no stopping its formidable force; permanant. Its like a cancer that Chemo cannot cure, its like having cystic fibrosis only Thurston's lifespan will not even be 1/4 of the predictions for someone with this disease. So yesterday, like clockwork, we were given the EXACT same options that we were given before he was born, either take him off of the life support and end his suffering or prolong his life and therefore his agony, that will always mean being hooked up to a vent and most likely include him being heavily sedated, and wait for him to crash again into his ultimate demise......

I know many of you are asking yourselves, "but wait isnt there ANYTHING else you can do"......and please bear with me for being extemely frank in the very fragile emotional state that I am in right now. ANYTHING and I mean ANYTHING that you are asking yourself please be assured as astute, intelligent, thoughtful, caring parents it is nothing we have not asked ourselves, asked the doctors, looked up online, asked other people etc. There is always a need for someone to try and help, to think that they may have the AHA solution to our issues and problems, and really we know that you only mean well and of course you would like Thurston to beat this horrible disease as much as we do and we love you for it but trust me it will only make this process more painful for us so if you write to us or call us or text us or talk to us PLEASE I beg you do not berate us with the "isnt there anything else they can do" or "well what about this avenue or this road, have you tried that" "hey I read about this situation...." etc. Please please know that we have been dealing with this situaion for almost a year now. Please know that we have consulted many many people, have done gallons of research and have talked to a multitude of parents in very similar situations. I know it is only natural for an outsider to think that there MUST be something that they can do, but Thurston now has a terminal illness who is being kept alive by life support. That this couldnt be more painful or more tragic or more unreal and what we truly need is just some time to let it all soak in. We have no answers as to when where or why it will happen, much like someone who has been diagnosed with terminal cancer but the doctors think it is only a matter of time........

Having said all of that we are getting a second opinion and the doctors are helping us do that. We still may run a few more tests here and there. We obviously as his parents want to make sure that we have exhausted all possibilities in this manner, to make sure if and when he does pass away, that we did everything we could for him. Trust me we dont want to live in a world of regret either. After we have done all of that we will have the ability to take him home and to make sure that he can be with us. He is still very much himself and has moments where he is kicky and happy and coherent even through all of the sedation which they said they will slowly wean him off of. We welcome all visitors both in the hospital and at home who would like to come see him, to meet him for the first time, to say goodbye, whatever it is we would love it and I know Thurston would love it. He is a very social little guy and I would love that his life be full of as many awesome and incredible people and moments as possible. Thank you for all of your support this last year and continued support helping us get through such an unimaginable tragedy, something no parent or child should ever have to go through.

I clearly remember the one thing that always gave me hope on this very long journey was the fact that I always thought that one day, Thurstons lungs would get better. I always thought about all of the parents who had to drive to the hospital day in and day out knowing full well that their childs days were limited, knowing that they did not have a future with them, and I always thought, "at least we have hope". Well now we are those very parents that I always felt so bad for. I now have to redefine yet again what hope means, if I can even find it. Right now I only feel that all hope has truly floated away.

When he shall die
Take him and cut him out in little stars
And he will make the face of heav'n so fine
That all the world will be in love with night
And pay no worship to the garish sun.
~William Shakespeare, Romeo and Juliet

Tuesday, February 15, 2011

Critical condition.........

Thurston is in critical condition once again. he is maxed out on his settings and on 100 percent oxygen and 40 ppm nitric oxide. They think he is having a pulmonary hypertensive episode. We are not sure what this means. Please keep him in your thoughts. He was actually supposed to come home this Thursday. I am not sure how much more of this I can take. I feel so bad for my sweet little boy. Thank you so much for your continued support......

Sunday, February 13, 2011

How it all started part II.....

The next day.......

So Chad took the day off of work and we drove with Viola to the heart specialist. Thats the thing when you dont have family to help out, ya gatta take your kid everywhere, under the most stressful of circumstances. Yet it has also made us this really strong, tight little unit it has. Kind of like we are all in this life together and we do everything and I mean everything together no matter what. It definitely has made us stronger fer shure!!!!!!
Anyway, the docs office is located downtown so it is a bit of a drive. We walked into the building, and it reminded me of an old Victorian insane assylm. If the circumstances were differnet I would have been enthralled as anyone that knows me knows I love anything from the past, especially 1930s and before but in this case, it was creeping me out. Anyway, the doctor was running late as he had a last minute case at the hospital down the street so we waited, and we waited and we waited......

Finally they called us back into one of the rooms. We waited in there for a while as well. My poor daughter, I thought. She sure is one patient little girl. Finally we were escorted into another room where Chad and Viola were allowed to sit and watch Curious George the cartoon movie. We had never seen it before and Viola actually enjoyed it thank goodness because my examination took the entire movie. And the entire time the doc was doing the ultrasound, he was completely silent......I mean like a silent movie silent, with no orchestra, no organ accompianiment, no cute 1920s cartoon sound effects, painfully quiet. That made me so nervous. He was marking things down, looking and looking over and over again. Finally, as if it was planned as soon as the credits to the movie rolled down he said, "ok I think we are done here, I got what I needed". So with bated breath I looked at him like, "OK tell me everything what is wrong with my babies heart". He told us to go back in the other room and he would talk with us. Tears were pouring down my face. I knew something was wrong. I could feel myself wanting to throw up, my stomach creeping up my esouphogus. We waited patiently again, and finally the doctor came in. I was standing in the corner, leaning up against the wall hoping that it would hold me up when he told us the horrible news. He looked at Chad and then me again and said,"well I looked for a very long time and I was very thourough and i want to let you know that it looks like your sons completely normal". knees buckled, I could feel this unbearable weight suddenly fall off of my shoulders, I started crying, I looked at Chad with happy eyes. The doc explained why the first doctors thought there was a heart defect and said it is very hard to see anything with this low of fluid. He drew us a diagram and everything but assured us that Thurstons heart was normal. Chad and I thanked him and he wanted us to have a follow up appointment in a month. I couldnt believe how relieved I was. I knew that if he did not have a heart defect that the chances of a chromosonal abnormality were also low.
We actually felt like celebrating a little. We knew that there was still something wrong with Thurston but this was a victory, a small victory, but a victory nonethelss. We went to Mohters cafe, our favorite vegetarian restaurant in Austin. we knew we could at least have a somewhat normal weekend now. At least until the next appointment.......

Thursday, February 10, 2011

How it all started......

I am not sure if many of you know how and when this all started. Unfortunately it started in utero when we found out something was wrong with the pregnancy. As anyone who has dealt with a tragic situation, it is very hard not to think about it at the time of year of when it all happened. I often have thought about the very happy days right before my world crashed around me. I remember fun valentine playdates with Viola and I remember being so excited about having my little boy, about the vintage maternity clothes I had been working on, about the upcoming blessing way that my moms group holds for pregnant mommies, about so many things until this very day last year.........

So I met with the high risk doctor today. I was sooooooooo not worried at all. I just thought maybe I need to drink more water. I had just left a wonderful playdate with Viola. She came with me and played with toys while I sat up on the table. The sonographer came in. She was as nice as pumpkin pie, seriously such a sweet sweet girl. As she sat looking at the scan I had asked her to confirm if it was a boy as I seriously did not trust that last sonographer. And she confirmed it. I did see some worry in her eye. She kept measuring the baby with her instruments and kept looking at his heart over and over again. I asked her about the fluid and she said that it was very low. I started to panic a little. Then she said she thought she saw something in the heart. I really started to worry. She then said, "let me get the doctor". I called my mom immediately. We have some valve thingy that runs in our family. I think both my sister and grandmother have been diagnosed with something else, and Viola and Chad both have a heart murmur so I was praying and hoping it was something along those lines. Then the doctor walked in and I told my mom I would call her back. She had that look in her eyes. I will never forget that look. That, "there is something really really bad I have to tell you" look. She sat down and said she thought there was something seriously wrong with Thurston. She thought it could be chromosonal based on the fact he was measuring 3 weeks behind(more like a 20 week old fetus), his fluid was low and he looked like he might have a heart defect. It seriously felt like she was talking in slow motion....almost like a charlie brown adult but in slow motion. I could feel my stomach hurling, I could feel my heart beating, I could feel the world collapsing around me. I think I screamed hysterically, and then I remembered Viola was in the room(She had been sitting there patiently for over an hour and a half during the examination bless her heart). I picked her up and held her. She looked at me funny and said"mommy crying". I will never forget that moment. It haunts me to this day.
I told the doctor I needed to call my husband. I am not sure of what I told him over the phone outside of get over here as soon as you can. Chad came and was so calm. He just has this strange ability to be calm during the most stressful of situations. The doctor went over our options. She asked if we wanted an amnio to see if he had a chromosonal abnormality. We said yes. She then said we could see a heart specialist to see what kind of heart defect Thurston had. Everything just happened so fast. Chad took Viola out of the room and the doctor did the amnio. She couldnt get any fluid because it was so low and it hurt like hell. She poked me twice and then decided to take a sample from the placenta instead. Tears were pouring from my eyes. I couldnt believe this was happening, and way too fast. I wanted time to stand still, like in Narnia. I wanted to process it but I couldnt. I felt like I was inside a blender. The blades cutting me into small pieces that I couldnt begin to put back together.

When we finally got home, somehow I managed to call the heart doctor and made an appointment for the next day. Seriously I don't remember the rest of the night. There were alot of moments that I have buried deep inside me. This was one of them.

Friday, February 4, 2011

Dust Bowl Days......

"Theres a new wind blowing" they say
Its going to be a cold cold one
so brace yourself my darlings
it wont bring anything much our way
but more dust bowl days......

Things have gone from bad to worse........

So we were told that with the trach things would be better. That Thurston would be breathing better, that he would be more comfortable that he would be stable and that he would have a guaranteed airway to work with. Nothing could be further from the truth. He is even more unstable than he ever has been. He was supposed to come home yesterday but because of the weather and the threat of rolling power outages, we all decided to wait until Monday. Well now that is not even going to happen. I have to wonder if he will ever get home. Need I remind everyone he was born March 8th..............yes a year is creeping slowly up to us with no end in sight.

This morning he had yet another "episode" and desatted down into the 70s and they had to take him off of the vent and bag him several times and turn up his oxygen to 10 liters(he is supposed to be in the 3 to 4 liter range). They have absolutely no idea what happened to him. Of course they are running the battery of usual tests that I could repeat in my sleep. The only solace is that at least he was in the hospital and if he had come home we would have had to call 911 within the first 8 hours of him getting home besides going through the horror of trying to get my son to breathe.

Thurston is more unstable than ever, he is more uncomfortable than ever, he is less mobile than ever.....and the trach was supposed to be this miracle.......we knew it wouldnt cure him but everyone said how great it would be and how we would be so relieved, how he would be so much happier and more comfortable and that we would be asking ourselves why we didnt do it a long time ago.....Ive never ever seen my son in so much consistent discomfort in his entire life. When is this going to end. When do we get to see the light at the end of the tunnel. When will it be our turn to not just get our son home but to get him to a point where we can have a half way normal existence with him. I have talked to several trach mommies and all of them said that their children thrive once they got the trach. I guess Thurston is just one of those unlucky cases. Why does he always get the short end of the stick? Why does he have to be the one kid that has to suffer endlessly? I am beside myself with grief. This process just seems to be neverending. I feel like I am trapped in a Steinbeck novel you know the long one not the short novella where he describes each and every ant hill in detail, it feels that you are never going to get through the the next chapter let alone the book. Where is FDR when you need him, where is our New Deal. The tumbleweeds just continue to blow down our alley of life, the water just keeps getting sucked dry and all I can envision for our future is more dust bowl days.