Follow the journey of our sweet little micro-preemie Thurston........
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
I am a stay at home mom and aspiring vintage seamstress interested in preserving and bringing back vintage fashion through the use of antique patterns. My years of interest include the Edwardian era through the mid 1930's.
Its hard to believe that a year has passed since I wrote this blog, and this day is very painful for me and my family. Today is the day Thurston should have been born, and had he been, we would have been celebrating his 1 year birthday. Instead, all I have to look back to are memories of this horrific last year, and all we and he went through. Here is my blog post from last year, and I can guarantee that this day will always be D-day for us and we are still continuing to "storm the beaches of normalcy".
June 4th 2010
"D-day: storming the beaches of normalcy!!!! 13 weeks actual 40 weeks gestation 1 day old adjusted
Yes today was the day, the day that my sweet boy should have been born. Due date day I will aptly nickname D-day. And boy has he been at the frontline of a battle, the battle for his life. His prematurity a nazish nightmare, an invasion of a full term pregnancy. So we continue to storm the beaches of normalcy. To try and find some kind of peace with our reality. It is today that the NICU will start counting his "adjusted age". So he is 3 months old actual, 1 day old adjusted. I cant believe he left my womb so early. I am feeling the mental duress of all of this. Today I did break down as one would expect. I should have been in a hospital room full of flowers and well-wishes with my sweet boy and husband and daughter snuggled up and warm, instead I am sitting here attatched to a pump, my sweet 2 year old daughter by my side watching Max and Ruby, my beautiful son, being seen by a pulmonologist to tell us how bad his bpd is and what the long term prognosis will be. I just never thought I would be in this situtation. It is one of those things that you only thought happened to other people. But I would never want anyone else to go through this. It is simply to painful for words."
So I have too many thoughts racing in my head I think I almost need to make this in parts. The first are my philosophical thoughts and feelings that this situation has left me in and the other how we are doing just a mere week later.......
First and foremost I would like to thank everyone for the most amazing support any family could possibly receive during such a painful time. We have received meals every night, I have read the most amazing and incredible emails, text messages, phone calls, and well wishes. Someone from my preemie web board sent the most amazing collage of pictures of Thurston that they had made with my favorite quote, I cant even believe the generosity and kindness from people I know and love and people I have never met. I also received an email from a paramedic from New York City who endured 9/11 who told me how much hope Thurston had brought back to her, that just blew me away. This process has truly made me a better person, and has imbued me with more hope than I ever thought possible. I want to thank all of you from the bottom of my heart and I cant even begin to tell you what your kindness and thoughtfulness has done for us. That instead of feeling jaded and sorry for ourselves, we feel empowered and grateful and without all of you we would probably have been in a very different place.......
On this very long painful journey, it has been hard not to think of one of my favorite novels, Mary Shelley's' Frankenstein; or, The Modern Prometheus. If you know the story of Prometheus, then you know that basically he created mankind from clay and played many tricks on Zeus(God if you will). He stole fire and gave it to human kind(much like the apple and Eve story) and therein sparking humans to move forward in science and creativity. One of the greatest themes in Frankenstein is how far is too far is science tempering with nature? How far should we really go?
I have often thought about why they would save 1 pound babies, especially my 1 pound baby, who had less of a chance of survival at 27 weeks than a 23 weeker because he had IUGR and was very compromised and stressed already in utero, starved of nutrients and oxygen and not growing because of it. It is definitely still a gamble that doctors, that society, plays with these children who have only percentages to go by and Thurston's chances of survival according to statistics were less than 17 percent if you went by his weight.
Here is where Thurston's chances get murky. Thurston weighed what a 23 weeker usually weighs. So basically he truly only had a 17 percent chance of survival. However he was 27 weeks so you would think, well then he has a 90 percent chance of survival. But the doctors all told me as well as the obgyn, with Thurston who was already sick and compromised in the womb he probably was closer to that of 23 weeks, perhaps even worse. There are also charts that depict the chances of morbidity and disabilities which are I think even harder to quantify but Thurston had an extremely high chance of severe disability and severe medical issues. I will never forget the day Chad and I sat down with the doctors and they had told us that his chances of blindness, severe lung disease, cerebral palsy etc. were so much higher than that of even a normal 23 weeker, he just was such a sick little guy.
I have gone back and forth this last year about thinking if we should be saving these babies, I guess when you fall on the negative end of the percentages and you watch your child suffering endlessly day in and day out, being hooked up to so many machines and enduring surgeries and endless drugs in order to survive for more than a year, there is no way you cannot question; is science intervening where it should not? Was my sons suffering worth the "gamble" that obviously in the end did not pay off and by that I mean not only did he not make it, but he truly suffered greatly, especially in his first few months of life, in August and especially in the last few months of his life. When I was a special education teacher, I often tried to put myself into my students bodies. I thought what would it feel like to have their medical diseases, their aches and pains, their fragility. With my son, every day I couldnt help but imagine how it would feel if every breath I took was a struggle. I imagined it may have felt a lot like having bronchitis or even pneumonia every day for a year. I went back even just thinking about my c-section and how painful that was to recover from and thought about his surgeries and I thought, how can this little being endure so much pain and discomfort let alone how scared he must have been(I saw it on his face) of not knowing what happened to him. I imagine what some medications felt like and all of their side effects, dizziness, nausea, bloating, light headedness, headaches, you name it just think of any medication you have had to take and remember all the side effects and times that by 12-15 a day several times a day. Let alone all the needles, pic lines, ng tubes, loud noises, being woken up constantly right after you had just fallen asleep.....I just cant even begin to imagine
I often go through and think was his painful life worth it? Who is Thurston ultimately here for, us or himself? I know most of you may not agree but if I had a choice, I probably would have preferred that he died in utero when they said he was supposed to. Yes that means that I would have never got to meet him, got to see his sweet smile, got to witness his incredible perseverance, his formidable determination, and I would have been bereft of many of the wonderment that he brought to my life, however, as I have said before, Thurston was not here for me, he is his own person, and watching your child suffer so much, I would have to say that I would trade all of the beauty that I received from him to never have had him hurt so badly everyday of his little life.
Having said all of that he must have wanted to be here for some reason, he fought tooth and nail and lived way beyond all of the doctors expectations. According to one doctor he shouldn't have even lived one day let alone 380 even with all of the medical interventions. I am still left with more questions, than answers, more queries than results, more curiosities than knowledge, more pain than relief; I doubt this passage of my life will ever truly have a neat and tidy ending, it will always be open ended replete with uneasiness and doubt.
The flip side of course are all of the preemie babies who not only made it out, but with very minimal damage in the grand scheme of it all. Yes of course they have issues, I think most have eating issues, and some will unfortunately have life long health issues, but most are doing pretty OK and have a great shot at a happy and fairly pain free life, and that is all anyone can truly hope for for their children. So obviously, for those families the gamble is definitely worth it all and I am truly so happy for all of my wonderful friends and their beautiful babies............
The first few days after Thurston passed I was a complete mess as anyone would expect. His last week he was not doing that well and it was truly painful to see him so sick. The hardest part was when his sweet little body was taken to the funeral home. I curled up in a ball on the couch, I couldn't breath. It seemed like a horrible nightmare and all I wanted to do was wake up..........
After a couple of days I kind of shook myself as if there were two of me. One of me was shaking the other to snap out of it. It said, "you still have a beautiful daughter, you have wonderful memories of your son, and you need to move forward". I realized that unlike someone who suddenly lost a healthy child, Chad, Viola and myself have been literally grieving for over a year now. There was not one single day that I did not tear up in this last year, not one day where I did not grieve for my child. After the event in August, I think I even knew then how fragile Thurston was and I knew that there was a very very high probability that he could die. Even after the trach, although I was hopeful, I knew that even if he caught a cold let alone the flu, that it could possibly kill him. In a strange way, I was prepared for his death I guess, unknowingly.
I have always gained strength from others and the oddest thing is that Thurston's birth and death were bookended by two very horrible natural disasters: Haiti and Japan. When he was first born I kept reading and seeing horrible images of Haiti and I imagined how horrible it would have been, how some people lost their entire families, their homes, their friends, their villages and I realized we are certainly not the only people in the world to suffer, to experience tragedy. Now I think of all of the people in Japan who are going through the same thing. I grieve with them knowing only a little of what they could be possibly going through. It is a strange coincidence that I have had these two tragedies to look to strength for and to count all of my blessings in my life.
There is also a woman who I have never forgotten whose husband was killed in a horrible college shooting and then 6 months later, one of her children was run over and killed by a car. I remember her in the news and when people asked her how she was coping, how she was still standing I remember her saying that she still had so much to live for, that she still had another child to be strong for, I remember thinking what an amazing woman she was with tears streaming down my face. She has never left my thoughts and now I think about her with even more amazement
This week we took Viola to an improv Theatre, one I had taken to her before Thurston was born, and she had a blast. Her life completely vanished this last year too, and I not only grieved for my son but for my daughter as well. She has been the most amazing and patient little girl and truly put up with a lot, going to the hospital on a daily basis, me pumping 6 to 8 times a day for an entire year, me crying all of the time, etc...before all of this our lives were jam packed with library visits, playdates, parks, theatre, art, music, jumpy gyms etc......we truly had something going on almost every day. I want to get back to that and although there is a part of me that will always feel guilty for moving forward which I am sure is a very normal part of grieving for anyone, I must do it for my daughter who deserves to have a full life. I know her brother would want her to.
There is a strange part of me that feels like the last year was just one big nightmare that I finally woke up from. I sometimes feel like none of it really happened and that I am still 20 weeks pregnant looking forward to the future of my second baby. Unfortunately, when I look down I am not pregnant, when I look up I see my son's picture on the mantle with his ashes and I have to accept that it was our reality. Every day since he was born, to cope with him being away from me in the hospital, I have always brought him with us. I carry him in my arms while he is nursing, I pick his car seat up and put him in the car, I place him in the bathtub next to Viola, I put him in the grocery cart next to Viola and tell them to stop picking on each other, I lay him down beside me every night and wake up with him every morning.....Every single day I have lived in this alternative reality, even more so now that he is gone. I am sure I will be grieving the rest of my life, but I also remind myself that I have so much to still live for, to be grateful for, and although I will never be the same, like I taught Viola a while ago when she used to fall down, I am ready to "take a deep breath, pick myself up, dust myself off, and start all over again"..............
Baby mine, don't you cry Baby mine, dry your eyes Rest your head close to my heart Never to part, baby of mine
Thurston Keaton Mossholder
March 8 2010-March 22 2011
Thurston passed away very peacefully in his mommy and daddies arms. He enjoyed two whole weeks at home, which was more than we ever could have asked for. Thank you so much for all of your prayers, thoughts, love and support during this very difficult last year. We appreciate all of you so very much and will update you in the coming days and will be holding a memorial event in the weeks to come. We have kept a journal for visitors for Thurston while he was in the hospital and when he came home with thoughts and feelings directed to him, so if you would like to add a card, note, drawing or anything that I could eventually cut out and add to his journal we would so appreciate it. You can send them to:
Hello darkness, my old friend I've come to talk with you again Because a vision softly creeping Left its seeds while I was sleeping And the vision that was planted in my brain Still remains Within the sound of silence
I apologize for not updating as the last couple of weeks have been a whole lot of crazy. This will be a brief update. We got to take Thurston home on hospice on his birthday March 8th. It was a glorious day but also bittersweet as they told us that without a couple of the hospital medications, he probably would not survive the day. In true Thurston fashion, he hung on and we have been able to enjoy some wonderful moments with him, however, we have also encountered some very scary, sad and heartbreaking moments as well. Its only a matter of time and we are keeping him comfortable and loving all over him.
I also wanted to ask in the coming days and weeks that although I do not expect anyone to ever know what to say to us in a situation like this, I do have one request and that is the one and only thing I do not want to hear is the phrase"at least". "At least you got to take him home", "at least you got to spend a whole year with him", "at least he is in a better place now".......I dont want to have to smile and pretend that what you say to me does not hurt, does not sting, does not sear into my soul. I have been standing idly by watching almost everyone I know for over an entire year live their normal lives, have normal births, have normal children, and I am so happy that most people will never have to go through this very long elongated process of suffering, but at the same time it hurts so much that Thurston had to be the one to go through all of this. My son has suffered greatly in the last year, it has been horrific watching my sweet child get poked and prodded, stuffed full of drugs you cant even begin to imagine, endured two surgeries, both which left him in great pain, pumped full of oxygen that I can only begin to imagine how uncomfortable that must have been on both the cannula and the cpap, lying in a lonely hospital room for over a year where he was constantly woken up, especially in the last three months almost every hour if not more, where everyday he had circles under his eyes because no one would allow him to sleep, and I really dont feel I need to go on, you get the gist. I would also like those few people that think my son still might "make" it that as his mother, I have accepted his disease, that death is not horrible especially when you are suffering, that I truly believe it will give my son the peace that he deserves and that if I can accept it, and that if I can wrap my brain around it and that I have been with him through thick and thin and I KNOW HIM BETTER THAN ANYONE ELSE ON THIS PLANET! then I please ask that you refrain from thinking that you know more than me.....it is extremely insulting and although I am not religious, I have always felt that it is ironic that people who believe in a place like heaven are so afraid of death and according to their belief systems, death actually should bring beautiful and wonderful things to my son. Ultimately, Thurston is not on this planet for me, for Chad or for Viola. He is not here to amuse us, to bring us joy, although those are all benefits we have received by his mere existence, but Thurston is his own person, he is suffering and when he chooses to go, he will, just as he has chosen to hang on as long as he has.
This has been a trying couple of weeks and although we are relieved he is home and that he is in a better place, it has not been easy on any of us to watch our son go through this process. Right now he is comfortable and sleeping and at this point, all we can hope for is that he does not feel any pain. I have truly been coasting on autopilot, which is the only reason I am standing, almost like an out of body experience. I so appreciate all of your support, prayers and everything everyone has done for us and would like to thank my preemie moms, Candace, Beverly, Michelle, and Jennifer for their wonderful gifts and for my father and mother, both of whom extended their stays to help out in this impossible circumstance and for Thurston's Ami mommy whom I couldnt begin to even think what this experience would have been like without her.
I wish things had turned out differently and sometimes I often exist in an alternative reality where Thurston was born normal. Every day I think about what we would have been doing had that happened what life would have been like for us if Thurston had been born under normal circumstances. You never ever forget about the dream that you once had no matter how tragic the circumstances......"and the vision that was planted in my brain, still remains, within the sound of silence".......
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!!!!!!
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!!!!!
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
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......
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 heart.....................is completely normal". WHAT.....my 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.......
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.
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.
Sorry so much for the very long time between updates. We have been training like crazy and thank goodness we had the wonderful Jim and Janet in town for another 3 whole weeks to help around the house and watch Viola or I probably would have gone completely crazy. It is hard enough to be away from your family when you have kids, but to have a situation like this and not have any family close by is extremely challenging and we couldn't be more grateful to everyone who has come out to help us.
I'm not sure what I wanted to write about in this post as sometimes I try hard to mask how difficult all of this has been. I always feel guilty if I think this is hard as so many other people have it worse or lost their babies and I always think that I need to be grateful but I guess having a child in the hospital for pretty much an entire year earns me some right to be down now and again right?.
I have to tell you that pre-trach I was doing ok. Thurston seemed on the cusp of turning a new leaf. He was happy and smiley, cooing, rolled over on his own once, almost able to sit with support, and I felt that perhaps he might have a shot at a half way normal life with lots and lots of intervention. Post-trach has been pretty devastating. My son has not had one day where he has been pain free. The vent is extremely uncomfortable for him and when he coughs or sneezes it hurts him so much, as it is a completely different ball game to cough and sneeze with a trach down your throat. He also gags ALOT and chokes every time you move him around, and due to all the coughing, gagging and choking his face turns red ALOT and he looks like a great big sad red balloon. He is also withdrawing from all the sedation meds and that makes him extremely uncomfortable. It has been a fine line of trying to wean him off of them but also, trying not to let him be in too much pain and discomfort from withdrawal. Aw my son son is an addict at the ripe old age of 11 months old. Wonder what the teenage years will bring.
You know I was actually felt really good about our life when he came home on the cannula. I knew it meant more equipment. I wasn't even bothered by all of the doctor and therapy appointments he would have...Pulmonologist, GI, Optomologist, Heart doctor, Neurologist, Developmental Pediatrician, Regular Pediatrician, OT, PT, Speech, etc. You name it Thurston pretty much is being followed by every ologist known to man. Still I didnt care. All of those appointments were still way less traveling then we would be doing had he still been in the hospital......I was really trying to find the silver lining to it all....I mean at least my kiddo was home so I wasn't about ready to complain about anything. I was looking forward to even giving him and Viola a bath together. It still wouldnt have been easy but doable. Now with the Trach and with the vent that is an impossibility. That saddens me to no end. With the Cannula Thurston would have been fairly easy to transport around in the stroller. With the trach and vent, it would pretty much take an army to do that, and quite frankly, who the hell wants to do an emergency trach change strolling around the neighborhood or have the vent suddenly break and have to bag him...best just to stay home close to all of the necessary equipment. With the cannula I was able to transport my son in my car...never mind all we would ever really be able to go to is doctor appointments but there was something nice, normal about putting your son and daughter in your car together. Now we cant even do that. When we travel, Thurston has to go in an ambulance and Viola and I riding behind him. It is too dangerous for him to travel in a car. Thurston was cooing so much right before the surgery. One of the most devastating things about the trach is now he loses his voice. Although he has been able to squeak through the trach at times, I am so sad that I cant even hear him cry. He truly has lost his voice which also means, even more delayed speech down the road. And I don't even want to get into the mobility issue. With the cannula Thurston was pretty much still relegated to the living room but you could still easily transport him upstairs with an oxygen tank if we wanted him to explore the house a little more. The cannula also was very very long so we could at least walk around holding him, but not with the trach/vent. It is barely even 2 feet long. I had to rearrange the living room and even though I squished the rocking chair, the co sleeper and the changing table as close as I could, I still think we will have trouble moving him from those three places. Also, I cant hold him over my shoulder and have him fall asleep upright in my arms, one of my favorite positions before. And nevermind that my son aspirates and will probably not even begin to eat for at least another year if not longer. The trach also will make it much harder for him to roll over, yet another impediment to his already delayed milestones.
And dont get me started about the daily routine the trach has to offer. We still have to give him his army of 14 different medications daily at various times, we still have to give him his nebulizer treatments, but now boy oh boy, we have to do the fun trach cleaning daily which is very difficult and scary with a squirmy kid, and changes once a week. I roomed in the other day for 12 hours and Thurston was not doing well. We think he got a little cold and he kept desatting all day. I had to constantly suction him (yet another thing that causes Thurston great discomfort)and try and trouble shoot what was going on. I finally had to do an emergency trach change. But I kid you not I had to be by his side for all 12 of those hours trying to keep his sats up. I was crying the whole day thinking about how I would do that at home with a 3 year old daughter and no one else around, no family in town to call and help. I thought there is no way I am going to be able to do this, it is impossible, you really cant even walk away for two seconds to even go to the bathroom, a split second could mean life or death for your child with a trach and vent.
As I was talking to the doctor I told him that the saddest part for me, and why I was crying the most was that the entire day, I was Thurstons nurse, his doctor, his respiratory therapist, his clinical assistant, his pulmonologist, his G.I. specialist, his ENT, and his pharmacist, but the one thing that I was not able to be in that 12 hours is the one thing that I want to be the most and that was his mommy. All I want is to be his mother, to read to him and hold him, to play with him and to love him, but I was too busy trying to make sure that he was breathing OK to do that. I'm just not sure how I am going to hold up during all of this. I am truly devastated and sad about all of this. I have not been in the best spirits lately and I want to snap out of it but I find myself constantly grieving. It just seems that this nightmare will never end. Its like some sick and twisted demonic energizer bunny that is out to get me and my family. One day soon I hope to write something a little more positive but right now, I am just a bit down. I really hope no one thinks I am being negative, I am just trying to cope as best I can given the cards we have been dealt in life. I have to say its a pretty shitty hand.
So I apologize profusely for not writing and updating as much as I used to. The longer this whole thing drags on the less I want to write about it. I feel so repetitive and things change so quickly that if I update one day, the next is usually 180 degrees different.
Anyway, I have also been having some huge issues with the hospital, I wont go into detail at all but that has unbelievably compounded our stress levels to the point where I almost think that I am more stressed out in the last month and a half than in the previous 8 months due to the fact that I have had to deal with a lot of other issues besides just dealing with going back and forth to the hospital and being with my son. Enough said.
I have been extremely adamant about the training of the trach as I do not want Chad and my training to uphold Thurs tons release(they wont release him until we are signed off on all training) so yesterday was the first time that I was able to change Thurs tonstrach. When he is at home we will only have to do it once a week, and of course during emergency situations(lets hope those are few and far between.....the trach can get occluded or clogged as it is very very tiny and he could suffocate very quickly unless you change it out pronto...happy happy joy joy) So Chad and I have to change it at the hospital 3 times each and you cant change it but every 3 days so you don't irritate his poor little windpipe, so you do the math, that is at the very least 18 days. Anyway, he is no where near ready to go home or stable enough but just want to make sure we get all of that in. It went very smoothly and quite frankly it is actually very easy. It does take time to set everything up and it will most of the time take two people because Thurston has no neck and he wiggles alot, but the actual trach change really takes about 1 second. So that is going smoothly so far and I hope we can get all of this out of the way quickly.
As far as Thurs tons stability, he finally is OK, as a matter of fact, the doctor told us that he had an overload of patients and Thurston was the healthiest so he would be the one to move back to the Intermediate care first...wow never thought I would ever hear those two words together ever, Thurston and healthiest one. Don't worry, I am not disillusioned by my sons illness. He is still a very sick little man. I am now very aware that he could still possibly die from this illness.......its something that just comes along with a kid in his shoes, who has been in the hospital this long and who is still on an unbelievable amount of cocktails and oxygen and support. Once he no longer needs oxygen and he gets the trach out will be the day when I can finally feel that he has somewhat joined the rest of the preemie world and be may be only more suceptible to illness than other kids etc. I kind of doubt he will ever join the real real real world. I fear that too much has happened to him and that unfortunately alot of this will haunt him for the rest of his life, but I hope we can get to a point where life will be comfortable and enjoyable for him. He has been puffing out quite a bit lately, retaining a lot of fluid, alot more than even right after the surgery, I might be able to post a picture later but my poor boy looks like the stay puff marshmallow. They are now tweaking a lot of things this week in hopes of transferring him from the hospital vent to the home vent and then we will be trained on all of that. Then they have to keep him on the home vent for a while to tweak that and see where he lands. In the mean time Chad and I will be training away, trying to get it all in so he can finally come home. Could be another month, no one knows it all depends on Thurston.
Yesterday was pretty exciting. Right after we did the trach change we were on our way home where Viola was being watched by our wonderful friends Janet and Jim who came out for a second time to help us again...they are just pure and utter angels!!!!!! So we get a call telling us Viola had vomited all over the place and she had a slight fever. So far we were not too worried until we got a second call telling us her fever had risen to 105.6. We were driving in the rain, through heavy traffic, and no where near home. I did not even hesitate, call 911. She had also complained of a headache and I was terrified as to what that might mean. So I called 911 and they came to the house and we were able to get there before they took her to the hospital. They asked us where we wanted to go and said pretty much anywhere we went most likely they would send us too Dell. You know what Universe. When I told you that I really really really wanted my whole family under one roof for once, that is not exactly what I meant. Anyway, the weird thing was when we got there I thought I had recognized the EMT people....lo and behold they were the same ones that transported Thurston on Thanksgiving day. One of those top 10 lists of how you know you have a very very very sick child.....you start to know the entire medical personnel throughout Austin Texas. Anyway, when we got there there was no way I could go see Thurston because of Violas illness and vomit all over me. Ain't no way I was going to expose him to all of that, that's the last thing that poor kiddo needs. So even at the hospital we were still separated. UGH. I did manage to get a pumping in and give him a nice dose of antibodies hopefully that protected him.
Anyway, after all the tests etc it was decided that she just had a virus and they sent us home. Its funny Chad and I were talking about had this happened to Viola pre-Thurston we would have thought it was the end of the world. We would have thought that was the worst thing that could have ever happened to us or our family hahahahahahahahhaaaaaaaaa. I wish. Throw any flu our way, I dare you. Give us a broken leg or arm, I laugh in your face hahahahaha. What we thought was so horrible at one point, now just seems like a mere drop in the bucket. My son has a horrible life threatening illness, and yes there are some things that definitely could be worse I know, but now spending 5 hours in the hospital emergency room was like a spa treatment in the grand scheme of what we have been through. You never know how good you have it etc. al.
Anyway, sorry for the long delay and because my husband is in charge of the camera and loading of videos, I cannot post any stay puff pictures but hopefully I can as soon as that is all done. Thank you again for all of your continued support and prayers. I hope all of you are doing well and healthy safe and warm. I knew this beautiful older lady that I served in my restaurant in my waitress days who always used to tell me the one simplicity of life.....Everything is always alright as long as you have your health.......she was 100 percent dead on right. Cant wait for that to be true for my son. It seems that its just taking too long poor little guy.
So I knew the honeymoon would be over quickly, as everyone was so pleased with thurstons progress, but things went downhill and he has had a rough few days. He is getting a million mucos plugs in his lungs and is severely atelectic(http://en.wikipedia.org/wiki/Atelectasis). His xray looked worse than before and he has needed a lot more oxygen and is trouble keeping his saturations in the 90s. I truly hope things turn around soon, he gets his first trach change tomorrow and then they can lay off of the sedation meds and hopefully he can start moving around more. He is pretty miserable right now and completely agitated. This definitely was one of my greatest fears of the trach surgery, the week after was supposed to be pretty tough, and it makes me wonder if we made the right choice. Only time will tell........
Update..just called the hospital and now they think he has a bacterial infection/upper respiratory and he is on anti-biotics, pretty much all my trach fears are coming to fruition...my kid has never had a single illness his entire life, only aspiration, not one little sniffle, nothing. UGH!!!!!!
So here are a couple of pictures of my sweet boy without his famous mustache. He did really well post surgery but they did have to use nitric oxide to get his oxygen down. Right now he is somewhere in the 50s on oxygen and I actually dont remember what his setting are on the vent. Most likely he will be coming home on a vent so I will be re-trained on all of that. Chad and I are going to have a very busy next few weeks as we get trained on all aspects of the trach, how to take it out and put it back in(yes we must push it into that ominous hole in his neck). CPR for trach, how to tie it on, all of the vent settings, cleaning, emergency etc. As long as Thurston does not get an infection, or barring any complications from the surgery we should be home fairly quickly, in about a month or so. I guess if you have been in the hospital for almost a year, a month is actually pretty quick. I remember thinking how a month was a very long time, I remember thinking 4 months was a long time, wow things change. I may not be able to update as often as I like and unless something out of the ordinary happens, I will be busy training and getting ready for my son to come home and preparing our living room to duplicate that of a mini hospital setting. We decided not to put Viola in preschool as it was just too far away and if I didnt have nursing or someone called in sick, I wouldnt be able to pick her up. Just trying to get her to and from the preschool would be very complicated but if Thurston does come home fairly quickly, then she and I can start doing other things like going to the library again, playdates etc. so I am happy about that. Thank you again for all of your encouragement and hanging in there with us and I am still going to continue my thank you post, really there are still many people I need to thank. Take care one and all
