It just keeps going and going and going.......

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.

You better fasten your seatbelts its going to be a bumpy night.......

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 tons trach. 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.

Rough Week

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!!!!!!

Naked Face Club.....

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

Donna, Chad, Viola and of course Thurston

Habitat for Humanity...........

Well needless to say this has to be the worst and hardest year of my life, of Chad's life, of Viola's life and most certainly Thurston's life, although thank goodness he wont remember any of it! If anyone would have ever said to me that my brand new baby would be in the hosptial close to an entire year I probably would have told them that that was a mathematical impossiblity. Even when Thurston was first born, and went through all of those dips and turns in the first few months I just still kept thinking about his first birthday and how we would have all of this hospital and medical complications behind us. I even told my uncle that next year at this time(March 8th) we would meet up and how we would all have gotten through our ordeals and that we would celebrate. WOW is that not furthest from the truth. When you are in the thick of all of madness, thinking about the future is sometimes the only thing that gets you through the hardest moments, knowing that in a years time, that you will have gone through it all and survived. Well thank goodness we all survived, but we are in no way shape or form over any of the hard parts, not even close. Thurston will be having his trach surgery on Monday. He will most definitely be in the hospital for at least a month after and most likely through his first birthday. We are relieved with this painstaking decision, but we are also scared out of our minds, from the dangers of the surgery and anesthesea, to the many complications that the trach can bring, and the uncertainty if even that will be enough to bring him home.

And still, there have been some really beautiful moments this year, that unfortunately still does not overshadow the tragic aspects of what has happened to my son and my family, but I would be remiss if I underestimated the enormity of what has carried us through this last year. I cannot even begin to describe the generosity that has been bestowed upon me and my family, the selfless acts of love, the warmth that swooped in and wrapped its arms around our home. Just today we got yet another christmas present at our doorstep (anonymous), and so so many acts of its kind, that continue to lay the foundation on which we are resting upon at this very moment. Each and every act building upon each other like bricks, prayers and love the mortor, providing us with an emotional shelter and keeping us safe from the tedious and harsh environment that has enveloped our lives.

I meant to write an extremely long thank you letter on Thanksgiving, to every single person that I could possibly remember that has helped us, from the smallest gestures, to the hugest of gifts, but of course everyone knows that that night the only thing I typed was 911 into my phone. So I feel that before Thurstons surgery, while I have some time, I would write out in detail everything that I possibly can(and I apologize if I have forgotten anyone), to thank those that have helped us, and maybe for everyone to see just how many beautful wonderful people have participated in building our little habitat for humanity.

(please come back often as I will be constantly adding to this list, and really I did not forget any of you, it just might hit me later on but I will add everyone I swear, you all have meant the world to me)

To Thurston for fighting tooth and nail even when I told you it was ok to let go. Thank you for wanting to live, to be here. I am not sure if I ever mentioned this but your name, had you passed away, was going to be Sterling. Although yes a very vintage old name, it also means 'litte star". I thought if you had passed away, that every night I could look up into the nights sky and find the smallest star, and tell you how much I loved you and that you would always be a shining part of my life. We are forever grateful that you ended up being Thurston instead. Thank you for enduring so much pain and discomfort, even now with so much air shooting up your nose, and tape on your face, and a pulse ox and stickies all over your body, and with so many drugs filtering through your system, and so many pokes and prods, and continued surgeries, I cant even begin to imagine what this has been like for you. You must really want to be here.

To my Husband who thought that he would never be able to handle it if anything bad happened to the pregnancy or the baby....I have to say, you have handled it with the utmost grace, calmness, compassion, and patience I have ever witnessed in another human being. Without you, I truly would be lost forever and I love you with all of my heart.

To my darling Daughter, who has had to endure an entire year witnessing her mother crying, who has been ignored more times than I care to think about, and yet who has more patience and whines less than most adults I know. Thank you for being such a wonderful big sister and giving up so much for your little brother, I adore you and you are my hero.

I am really tired now, and I will finish this in the next few days but I wanted to update you and again thank every single person whose kindness you will never know has made an unbelievable impact on our lives, and without, we quite literally may not still be standing. Thank you thank you thank you..

Thank you to all of the nurses(especially his primaries Mommy Ami, Gladys, Lourdes, Mary Lou, and also Terri, Linda, Heidi, Corina, Analise, and every nurse at North Austin I think you all had him at one point or another and to his Dell primaries Michelle and Peter and all the other wonderful nurses at Dell, All of the doctors and at North Austin and Dell, to Yvette the director at North Austin all respiratory therapists(oh gosh I am so sorry there are just too many names to remeber but you know who you are), social workers, pharmasists, Nurse Practicioners, assistants, volunteers, child life specialists, Chaplins, Custodians and every person who had every part in saving my sons life time and time again, who cared for him, held him, read to him, played with him, played music for him, you all have been such a huge part of his life and I couldnt be more grateful for everything you have done.

Thank you to my mother who has flown out to help us numerous times, giving up so much of her own life and needs. Thank you for endless hours on the phone. Thank you for listening to me scream, whine,moan, bitch,cry, pout, cry, and thank you for never thinking that I was crazy, just extremely lost on this unbelievable journey. Thank you for loving your grandbabies like they were your own. Your support means more to me than you will ever know and you epitomize what a mother truly means.

Thank you to my brothers and sisters. Julie thank you so much for making arrangements each and every time mom came out even at the last minute and thank you for all of your texts of support I love you big sis. Shannon thank you so much for all of your texts and emails and for all of our long chats and thank you for loving your boy so much, I love you little sis. Lonnie thank you so much for all of your support and always responding to all of fb posts, you have been such an incredible big bro even though you have had a pretty rough year as well and just know I love you to pieces. Thank you to my sweet little brother Patrick who also has had such a rough year, mom always tells me how much you love your little nephew and I just love you so much. I miss all of you and wish we could be closer. I know this journey would have been a million times easier had we lived in Ohio and I cant wait to see all of you again.

Thank you to my Pops and his wife Barb. Thanks for calling and checking up and for understanding if I dont get back to you for a few days(or weeks). Thank you for your donation and I just love you guys so much and wish we could be closer. You are the best POPs in the world and I know alot of my strength comes from what you taught me way long time ago as a kid, all that persistence has paid off!!!!

Thank you to Pat and Fred my in-laws who drove out and endured their own tragedies this year, who have helped us financially in so many ways, who are the most dedicated grandparents, and who take over the household, cooking, cleaning, organizing, revamping our yard and garage, fixing everything in their path(especially Fred). We are more appreciative then you will ever know and adore both of you. You are two of the most amazing generous people I have ever met and am so grateful that you raised such an incredible son. Thank you so much for that!!!!

Thank you to Chads Brother Brad and his partner Juan who flew out and watched their niece and who surprised us all by creating the most unbeliveable playroom for Viola. You guys did so much while you were here I thought maybe Fred had flown back out lol. Thanks for being the best Uncles ever and the best brother in laws a girl could ask for.

Thank you to my beautiful friend Karen who flew out and sacraficed so much to do so. Thank you for giving me my hippy cow pow back right when I needed it the most. Thank you for dropping everything in your life to be in mine. I love you so much Karen, you are my little shnarkle pow sparkle friend!

Thank you to my dearest friend Susan who has threatened to fly out on numerous occasions but it just was always bad timing. Thank you for constantly taking my mind off of all of this and regaling me with your own crazy life. You always always know how to make me feel better no matter how horrible I feel. Thank you for letting me cry on your shoulder and calling me. Thank you for always remembering to send me and the kids gifts, and especially sending past momentos that you come across, those are always a lark. I love you so much and thank you for being my best friend for more than 21 years. You are the best!

Thank you to my Uncle Mike and his family. I so looked to you for strength knowing you and your family were going through their own hell, and I so enjoyed our back and forth bantering, and cussing missives, and truly understanding what it is like to go through something horrific and terrifying. I love you muchos!!!!

Thank you to my dear dear friend Johanna. I adore you. You have been with me every step of the way and you have helped me so much with watching Viola, to gift giving, to just being there and listening to me when I needed it the most. You are definitely a keeper and I cant wait until things settle down so we can get back into doing things together more.

Thank you to my dear friend Allison, Jesse, Nicole and Josh(sorry you guys are a foursome, I just cant separate you! :) Allison thank you for calling me weekly especially in those first few fragile months. You have no idea how much those phone calls meant to me and how much I needed someone to reach out to me especially since I was on major withdraw mode. Thank you all of you especailly Jesse for helping move that monstrosity of a playscape into our backyard. You have no idea what an enormous gesture that was especially since all of you had so much going on of your own. Only dedicated friends would help out with such an insane project. Thank you Josh for your Raki's and healings and Nicole my little brown recluse, I have felt your love from miles away. I have always felt your presence and power and I know that Thurston benefitted immensley from your energy. You are an amazing group of people and it is a priveledge to have you in my life.

Thank you Janet Yudichak for sending me the most amazing vintage tea set. That came very early on in our journey and I just couldnt believe the beauty that someone I had only met once(however connected with instantly with our love for antiques and all things vintage) would go out of their way to send me something so beautiful and lovely and antique. That set will always remind me of the beauty that abounds in the human heart. I cant wait to be able to give you the biggest hug ever!

Thank you to tom Yudichak, chads childhood friend, his beautiful wife Julie and their pretty darn incredible son Justin. You guys have given us consistent support throughout this whole ordeal with gifts of homemade yummy bread, cards, a wonderful frame, and just some really great nights where both Chad and I could just feel that life was a little normal even if just for a couple of hours. We love you so much and just appreciate having you in our lives, especially since I love playing board games and you are one of the only families that do toooooooooooo!!!!

Thank you to Tom's brother Bill for sending us gas cards, you have no idea how much that helped us. That has been one of our biggest expenses actually being so far away from the hospital and going up two sometimes three times a day takes its toll(sorry environment, I had to see my son :)

Thank you all of the Ronald Mcdonald House volunteers, especially you Peggy who have constantly inquired about Thurston. You all are amazing and I cant believe you find time in your day to volunteer. You have no idea what a haven you have built for us families in need and we really appreciate all you do.

Thank you to my dear dear friend Janut and Jim. What an amazing amazing gift you have given us by not only coming out once for three weeks in the deadest heat of summer, but coming out again for another three weeks to help us out. The companionship both Chad and I receive from you two is immesurable and it is incredible to hang out with two amazing people we have so much in common with. Thank you for buying all of our groceries and cooking us the most fabulous meals and watching Viola all day while I visit with Thurston. You two wont be able to get rid of us now!!!!!!!

Thank you to my amazing and dear O'mammas, each and every one of you have been there for me either by encouraging emails, offers of babysitting, setting me up with amazing meals, phone calls, gifts, visiting me in the hospital, and of course for all the amazing donations to our auction and for spreading the viral word all over facebook. You guys continue to hold me up and I want to thank all of you for everything you have done for me.

An extremely and unbelievable thank you to Melanie for organizing the most amazing auction. I just dont know how you did it all and cant believe the amount of time, donations that you put into it and you have no idea how much we appreciate it, even though you are so busy. We love you immensely and cant wait until we can just actually hang out without that at the forefront of our conversations. You are an amazing lady!!!

Thank you for all of the people that donated and bid and solicited for our auction. I am in the process of trying to make birth announcement/thank you cards and I hope to send them out sometime in the new year. I cant believe how many people donated time and money and how unbelievable and successful the auction was and how much it will help us out. We just were blown away by all of the response. Thank you so very much!!!!

Thank you to Donna R , Devon, Pey Pey and Emby and Steve for helping me out with Viola and for being so amazing and supportive through this whole thing. We miss you guys so much and would love to see all of you soon.

Thank you to my dearest dearest Inspire friends. I truly dont know what I would have done without you. You ladies are amazing and especially to my sweetest and dearest friends Jennifer and Anais, two parts of my three amigos, you continue to give me strength daily and my heart aches everyday for Benjamin and Natalie. I love you guys so much. Also to Rhonda, Courtanay, Florinsmom, and Mygirls mom. You guys have been amazing with all of your advice and support let alone for your unbelievable gesture and I am forever grateful to you.

Thank you to my built in NICU family, Jen, Michelle, Beverly, Candace, Questa and the many more families that I met. You guys amaze me everyday with your strength and it has been great to relate to people who have gone through it all. Thank you Jen and your neighbor who donated all of those canned goods and their preschoolers who donated, I cant even believe what a generous and thoughful gift and we just cant believe how total strangers would be so inclined to give so much to us. Thank you Michelle for giving Viola something to look forward to once a week besides hospital visits and for helping out with her costume. Your dance class has been amazing for us. Thank you Bev for your future picture date and I will get with you soon and thank you Candace for all of your words of encouragement. Thank you Questa for the picture of your little tater it is hanging in Thurstons crib. I look forward to the day when we get all of our babies together unfettered by cords and wires and oxygen tanks(course that might take a couple of years for us) but it will be fun to watch all of our preemies grow up together.

I still have a long way to go and this list is in no way in order or complete and I will continue to update it but I must clean the house now. Love everyone and keep coming back for the updates

Thank you I think I will put the date next to the last update so you all know when I have updated the list.

December 31st 2010

Update #3 January 3rd 2011

Thank you so much Hand to Hold and its founder Kelli Kelley. Thank you for all of your calls and listening to me kevetch!!! Thank you for forming such an incredible organization and wanting to help others through this very hard journey. And of course, thank you for creating the preemie power photo contest, that was truly one of the only times that Thurstons life was all about him and how cute and wonderful and strong he is and not about the hospital life. That really got me through a good month and a half and it was so much fun for all of my family and friends involved. What a great and fun way to raise preemie awareness. You are the cats pajamas

Thank you to my very dear friend Greg and his wife Leilani. They have also had a pretty rough year and yet still have found so much time to help with our auction and to send emails and phone calls of encouragement. We miss you guys and hope one day when Thurston is better, that we can fly out and take a very long vacation, ALOHA!!!!

The Little Boy That Santa Claus Forgot

In Dreams.......

I remember this time last year. We were decking the halls, laughing, smiling, singing, and most of all dreaming. Dreaming about having a new baby in our lives, dreaming about Viola's first reaction, how they would get along, dreaming about new adventures, playdates, library story times etc. When you are pregnant, you cant help but envision you and your babies future. I dreamt of this time of year and how old the new baby would be and how exciting our lives would become. But those dreams faded and had to be replaced with new ones. I was talking to a friend the other day of how many times this year I have had to reinvent those dreams, reinvent myself, reinvent Violas life. I can honestly say it is probably more than all the reinventing I have done in my entire life.

When I was in my 20s, it was definitely not a burden to do that, it was fun and freeing and wild and promising. Early on, I wanted to be a private detective after having read one too many Nancy Drew novels. Having always loved the early 19th century, I envisioned myself living in New York city, with my Nancy Drew outfit, walking into a classic movie theatre playing a Buster Keaton revival series and meeting my one true love.... yes I was a strange 11 year old kid I was. Then in my early 20s I wanted to be an Egyptologist/archeologist. I have always loved the past and I thought I would combine my love for private investigation with the past and try to solve mysteries of long ago. Then I fell in love with literature and decided to make my ardent passion of the 1920s and 30s into reality, and studied silent film and thought I would make my way into becoming a silent film preservationist. Then many many things happened along the way.

The funny thing is though that once I got married and became a mom, I stopped dreaming.....in that I mean, I didnt feel the need to reinvent myself anymore. I was in pure and unadulterated heaven.....in other words, I was finally living the dream life. I didnt want anything else after that. So when I became pregnant, I just kept thinking that my beautiful wonderful dream life would continue but with another beautiful child and I would continue all of the mommy things that I so loved doing with Viola, breastfeeding, co-sleeping, singing etc. I envisioned Viola and the new baby doing all of the things I had done with her, library, gymnastics, playdates, bathtime.....I just thought life would continue on the beautiful spectrum that we were on.

Then when things started to go downhill with the pregnancy, every other week I had to keep reinventing my life and my daughters life. Then when we thought Thurston was out of the woods in May, when I began blogging, I set up the nursery upstairs thinking that I could still have that same dream, but things just kept getting more and more complicated. So I accepted that and reinvented the dream once again, changing our lives around thinking well we wont be able to go too many places but I envisioned lots of arts and crafts and there was still bath time etc. since we would all have to stay indoors and hole ourselves up for the winter.

But that dream didnt last long either. Then realizing that Thurston just might need to either stay in the hospital indefinitely or get a trach I realized that my daughter had spent the better part of the last year living life outside of the dreams I had for her. I then had to reinvent her life again. I finally gave in and realized the only way she is going to have any stability is to go to preschool full time, no matter what happens to Thurston. This pains me so much because I so badly wanted to be with her as much as possible these early years, they grow up so fast and I just so desperately wanted her to stay home with me and with her brother. So the dream I first had when we moved here to be a full time mother and stay at home with my children died. But I couldnt just let her life squander away because of our situation, I had to give her an opportunity to make her own dreams too.

As far as my son goes, I have to do what is best for him. Chad and I have talked this over until we are blue in the face. We realize that he is wasting away in the hospital and that there is no way we can even start our lives until he gets home. And the only way to do that is to give him the operation that scares me to no end, that will make our lives extremely complicated, that could cause issues later on, but I think right now we just have no choice. It pains me to be away from him, it pains me for many other reasons I cant go into here, it pains me to know that we have not been a "family" for almost 10 months now, torn apart, never really together. I must reinvent my dreams once again. As this experience has been nothing short of a nightmare, I will try my hardest to rise from the proverbial ashes like the phoenix and hope that one day I can live the dream life once again.

I wish I had a river I could skate away on......40 weeks and counting...

It's coming on Christmas
They're cutting down trees
They're putting up reindeer
And singing songs of joy and peace
Oh I wish I had a river
I could skate away on

Honestly OK.............Life SUCKS!!!!!!!

i just want to feel safe in my own skin
i just want to be happy again
i just want to feel deep in my own world
but im so onlely i dont even want to be with myself anymore
on a different day
if i was safe in my own skin
then i wouldn't feel lost and so frightened
but this is today and im lost in my own skin
and im so lonely i dont even want to be with myself anymore
i just want to feel safe in my own skin
i just want to be happy again

yup that about sums it up.......

Too much has happened and I just dont feel inspired to write really. In short Thurston made great progress until two days ago. He was actually slated to go home today but somehow his o2 needs went back up. They have talked about traching him again or else he will be in the hospital indefinitely as it is just too risky for him to be home without one. I know for some of you this seems like an easy decision but the trach is not without its complications and/or risks. He actually could do worse with one or to be quite honest, he could die from complications because he is so fragile. We are exhausted, emotionally, physically, financially. I am at a loss. He is 9 months old today and trying to balance his needs against Viola's needs is daunting especially since now he is 6 months old adjusted. He is significantly far behind in every and all skills. All he does is sit in a hospital bed, I guess what can you expect . I am sick with grief, with guilt , with angst, with apprehension, with depression, with anxiety and the only thing holding me together is my husband and my daughter who I cant comprehend are doing so much better than I am. Chad gave me a very long pep talk last night. He saves me everyday but I am still just at a loss. I hate being in this postion, where we have to weigh the lesser of two evils: an operation that could cost him his life but MAYBE get him home sooner(um yea I know of several kids who got trachs who actually had to be in the hosptial a lot longer because of complications from the trach so its not an absolute guarntee to get him home) or let him rot in a hospital bed for the next 6 months and wait for his lungs to get to a point where he can be more stable at home. I am full of hatred right now, I am feeling defeated, I am feeling anger and sadness and just wish that asshole was watching where he was going before he hit me when I was pregnant and destroyed any sense of happiness and normalcy that we had. I hate him for what he did. I hate that my daughter and son are living at a hospital. Please dont give me a pep talk right now. No one knows what this is like unless you have been there and for this long and have this many unknowns. It is pure and utter torture and you really truly feel like your lives will never be normal, like life is passing you and your children by. I wish we could just go and enjoy the holidays and get a tree and decorate and be jolly but you just cant have any kind of normal under these circumstances. Life really sucks right now and screw the glass half full bull shit....no one can ever understand what an absolute nightmare this has been. Trust me I wish we could have been those lucky preemies who got to get off of oxygen early on and go home but we are very unlucky and Thurston the most unlucky of them all. My poor son just has no idea what it is like to be free and I am beginning to wonder if he ever will. If you really want me to be honest then OK...... life sucks!!!!!!!!

Update....

So I guess our dream of home didn't last very long. Right now Thurston is at Dell PICU and is stable but still on very high oxygen of 15 liters comfort flow which is pretty much equivalent to Sipap/CPap but he can still be on a nasal cannula. He is on 20 ppm of nitric oxide which worked immediately to help bring him from satting in the 80s to satting in the 90s. They are doing all sorts of breathing treatments and changing around his medications.


Now to how it all happened....Well on Wednesday night our Nurse(yes we had no idea we were going to get home health care which is beyond fantastic, they set us up for 2 weeks at 16 hours a day and then to get reevaluated to see if we needed it beyond the two weeks unfortunately we didn't even make it 3 days ugh). Anyway, the nurse and I were trying to feed him and I stupidly tripped over his cannula cable which in turn tipped over his water humidifier which is hooked up to the oxygen concentrator and suddenly my poor son basically got a huge gigantic noseful and lungful of water, much like a neti pot but it was alot alot of water. He gagged and choked and desatted quite a bit during this event and I frrrrrrreeeeeeeeaaaaaaaked way out. Thank goodness the nurse was there to attend to the situation and after about 5 minutes and lots of nose bulb suctioning we were able to get Thurston stable again. Well I thought about taking him to the hospital that night but he seemed to be satting great and not breathing bad and we happened to have an overnight nurse that night so I wasn't too worried. The next day was Thanksgiving and he was doing great, at 1 liter satting in the 90s and was calm and playful and smiley etc. Well the day nurse left and we did not have a night nurse(the first couple of nights we didn't have any nursing care and boy oh boy was that stressful...Thurston is on over 13 different medications delivered 4-6 times daily, 3 nebulizer treatments a day and 1 liter of oxygen on a cannula he continually tries and succeeds at taking off and so pretty much you HAVE to stay up all night no ifs ands or butts or Thurston would be in big trouble....basically what I am saying is we took the hospital home with us so the nursing care as we have found out is essential until Thurston can get down to a much lower flow of oxygen or even off of it all together...we also feed him by gtube but that is a piece of cake so if that is all he needed and maybe a few meds it would be no big deal but we just cant chance Thurston desatting, without oxygen he goes down hill extremely fast). Anyway, My mom was in town and she was rocking him and suddenly Thurston started choking gagging coughing and snorting and a ton of saliva and foam came out of his mouth. I grabbed Thurston and started to suction his mouth with the bulb syringe. He seemed fine but suddenly he started to desat. I had Chad put him on our tank oxygen that goes up to 5 liters(the oxygen compressor only goes up to 1 liter) and within 5 minutes we had him on 3 liters and he was still satting in the low 80s. I knew right then and there that he had aspirated so we called 911. This time though for some reason I didnt freak out too much and remained pretty level headed, I guess the adrenaline took over. We got to Dell and he was initially put in the intermediate care unit on 3 liters thinking that maybe he was only going to need a few days to recover. Then suddenly started desatting again and they changed him from low flow 3 liters to a comfort flow 6 liters...then 8 liters...then transferred him to the PICU and then up to 12 liters. Then Chad spent the night on Friday and he seemed to be stable, then I spent the night on Saturday and he just seemed to start going down hill. The doctor decided to put him nitric oxide as that is used for Pulmonary Hypertension. It worked pretty immediately and he was able to get back into the 90s in his saturation levels and they had the sipap machine on standby just in case. Today they put him up to 15 liters to see if that helped at all to bring his saturation level up to the high 90s but they have not seen any results yet. They really thought he would be getting better by now but his xrays look pretty bad so he could be in the hospital for quite some time, maybe even for a few more months. He could also suddenly start to improve and be home in a few weeks, no one really knows for sure.

Thank you for all of your love care and support. This process going on almost 9 months now(10 months if you count all the pre-pregnancy drama/bedrest stuff) is absolutely emotionally, physically, financially exhausting. The most exhausting part is how life threatening Thurstons Chronic lung disease is. This is about the 7th time he has had a close call. And every time your life comes to a halt. Literally you have to drop everything, bills, events, phone calls everything just grinds to a halt and then when things stabilize you are left with dust settling everywhere to try and sort through. I can deal with ongoing appointments, therapies, all of the things that I was working on in that short period of time he was home, but this constant constant crisis mode might just end up putting me into the crazy house. I just don't know how much more I can take really.

We have an appointment tomorrow with the palliative care team. Now before you freak out(believe me I freaked when I heard that) they actually deal with alot of things, not just when a person is dying. They help families who have chronic health issues and where they for see the patient and family being in the hospital for a long time(OK why then did we not see one a long time ago lol) Anyway, this will not be the last time Thurston will ride in an ambulance, nor the last time that he will be close to teetering on the cusp of life or death. My son is no longer a preemie. He has moved on and now is classified as chronically ill. I think I have been in denial for so long. I wanted him so much to just have those normal preemie issues but now I just have to face the facts that he has a very severe, life-threatening chronic illness and we need to adjust our attitudes and act accordingly. The good news though is that hopefully in a few years he will eventually grow if not out of his lung issues, but at least they will improve enough that he will have a better quality of life, because right now, he is absolutely miserable. Even on the 1 liter he is still not the happiest baby in town and being on 13 different medications also screws around with his body enough to where he absolutely feels the effects(nausea, dizziness, pain jitteryness etc). He also is still dealing with the most horrible incessant cough he has had since about july of this year which sometimes is so painful it makes him cry. There is a rare moment when he is not dealing with physical pain or discomfort. I wish there was something I could do to take it all away, but only time can do that.


I will update when I can but right now we are just taking it one day at a time. Also, I threw my phone on the ground in anger. I just got a bad phone call so I took it out on my phone. Needless to say I have lost every ones phone numbers so if you could text me(I have the same number) with your name and phone number so I can update it in my new phone that would be great. Thank you so much also to my mom who helped so much and who listened to my crazy rants, hugged me through my tears, and supported us through all of this and also to everyone who has donated so much time energy and money into the ongoing auction for Thurston especially to Melanie for all the work and dedication she has given to it. We couldn't be more appreciative to all of you for continually support us on this very long hard journey.

Black Friday or The flying monkeys return or follow the yellow brick road///.......

Yes those damn flying monkeys came swiftly and stealthily back and again have taken our sweet Thurston for another harrowing ride to go and see the wicked witch of the west.

Well we were only home for 4 days and Thurston we think aspirated on his own saliva and within minutes he went up to 3 liters. We called 911 and he was admitted and slowly but surely he had to be put back on high flow and he is now on 12 liters. I am a complete mess. I feel like it just keeps happening over and over again like we are on the yellow brick road except it just keeps winding around and around and around in circles never ever ending. I feel like not writing in my blog anymore and just telling everyone to keep rereading it from the beginning because we are in continual repeat mode. When will the nightmare end, I am not even upset that he had to go back to the hospital if it was just for something minor or non-life threatening but at this rate we are just not sure of his outcome. Please someone give me a damn bucket of water so I can kill that damn wicked witch once and for all. Please keep him in your prayers and thank you for all of your support.

There's no place like home...There's no place like home...There's no place like home....

"Toto, I have a feeling wer'e not in Kansas anymore"



So from the title you can rightly assume that indeed, infact, unbelieveably yes our sweet Thurston is finally home. It has been a very long 260 days, 8 1/2 months, 37 weeks; as long as a full term pregnancy. Its hard for me to fathom that someone who got pregnant when Thurston was first born will be having their baby in the next week or two......I will write all about our experience much further in detail but right now I am just too exhausted in a very wonderful wonderful way but I wanted to leave you with this thought.....

I got to thinking about how this experience has felt very much like the journey that Dorthy went on in OZ. It very much felt like a tornado came and ripped my whole house up into the sky, knocking me out and swirling us into the air, landing in a very strange, dark and unknown world full of mystery and fear, dread and hope, tears of sorrow and of joy. And much like Dorthy, I have met many a Scarecrow, Tinman and Lion along the way as well as confronted scary moments of flying monkeys and witches, fell asleep among the poppies and faced Grand Wizards. And the whole time all I wanted was for our sweet boy to come home. So I donned a pair of ruby slippers, put my hair up in pigtails, closed my eyes and whispered those infamous words, ....and just like that, I awoke to have my sweet sweet boy sleeping in my arms, taking his first home bath, playing with sissy, looking up and seeing all of us together in our cozy home, and enjoying watching Thurston soak up his new environment and realizing that truly, there is just no place like home.

AUCTION FOR THURSTON

My sweet Mamma's group is holding an auction for Thurston starting November 28th. If you would like to donate an item or a service we would so appreciate it. If you are donating a local service(San Diego, Austin, Columbus Oh etc) all you need to do is put the city in which the service is located in the bid, for example "this item is for Austin only". Thank you so much for all of your continued help and support. If you Have any questions feel free to email me. Thank you friends!!



click here for Thurston Auction




Thanx!!!!

Happy 8 months Thurston!!!! and the best news yet!!!

So this has been an interesting couple of weeks. I dont even know where to begin. Thurston has been doing AMAZING!!!!!! The doctors last Monday decided to try him on low flow cannula. Last Monday they tried him on 2 liters.....then 1 and a half......then 1......then 3/4......then 1/2.......and that is where he is at today. We are all in amazement, shock, elation, and so many other insane feelings. Then the doctors pounced on us and said, "well it looks like this little kiddo is on his way....I cant even bare to say it outloud...it doesnt sound real. Ok I will say it


HOME


Wow were we shocked. Seriously I thought we were going to try a sloooooooow wean. I thought maybe a couple more months...maybe he might be home before Christmas. But Thanksgiving.....I just didnt think that was going to happen. So we have been scrambling this week. Lots of information, lots of last minute testing. Lots of last minute training. Lots of last minute organizing. Wow its just happening so fast...I say that and yet it has been 8 months. As a matter of fact Thurston is 8 months old today(5 months adjusted), Happy Birthday sweet sweet boy. Cant even believe that this journey has been that long. Cant believe my sweet little boy has beat every single odd, fought tooth and nail to be here. He amazes me.

Today I walked up to the NICU with viola and the one thing that always made me sad when I saw others carrying theirs, not sad for those that got to leave but just sad that it wasnt us....yup that wonderful beautiful car seat. Ok so he wasnt leaving in it but I got to proudly put it in his room for them to do a carseat study. It doesnt even seem real. It felt like a dream that I have had a million times before.

I can barely even write this my thoughts are just bouncing all over the place. We dont know exactly when he will come home but they think it might be as early as next week, GULP.....We have so many ducks to get in a row before that happens...medications, oxygen tanks, medical supplies, cpr class, gtube stuff, doctors appointments set up, holy holy crap. I just cant even believe this is real. When my mind is not floating some where up in the nether regions I will write more but just wanted to let everyone know, that soon soon soon my boy will get to see his very first cat, smell his very first home cooked meal, feel his very first cool breeze on his face, take his very first bath with his sister, touch his very first leaf.....he has a whole world he has never ever explored, one we take for granted every day, the little nuances that make life fascinating, interesting, beautiful, intriguing, all the tiny tiny things that make up this great big beautiful world of ours, I am so thrilled that my sweet boy will finally get to absorb it all, drink it all in, and love every second of it......it just makes life that much more sweet for all of us.


So I will write more later and also just wanted to thank everyone who has helped us along this journey. There are too too many people to thank and I will thank all of you personally one day in some way shape or form. We could not have done this without all of you, every single one of you. Thank you thank you thank you. And thank you for all of your votes too in this contest. It shows me how much this kid is loved, how many people are a part of his life, people I have never even met, people that have been routing for him every day. All of you amaze me to no end. We are so lucky to have so many wonderful human beings in my sons life. Will update very soon..... Love all of you!!!!!!!!

preemie contest

I will update after I hear from Thurstons doctor but wanted to let you know Thurston is in a preemie contest to help raise awareness of premature infants. You can vote once a day through November 11th. There are some amazing babies in this contest and each story is just beautiful and inspiring.


preemie photo contest


Have fun

Curb your enthusiasm........

I know its been a while but so much has happened and Thurston is still always on that roller coaster, we just cant seem to get a break when it comes to his stability, I just didn't feel much like writing because things just change too quickly. I have also been depressed on top of being severely sick(all three of us caught what I can only assume was the plague) and we also had a theft from our home so its just been a hard couple of weeks.

The hardest and most depressing thing for me that happened actually happened to a friend of mine(well two friends of mine). I met her through a preemie group and we have been going through this very hard roller coaster together when we first emailed each other over 6 months ago. Our babies were due around the same week in June and without going into details, her baby who was still in the NICU, just passed away. My heart is breaking as I write this. To go that long, to fight that hard, and both her and her child and her family have been through more than anyone can ever imagine, including me, and to have lost her sweet dear baby brought me to my knees in tears. She was part of a trio on that message board, referring to ourselves as the three amigos. The other mom of that group also lost her baby a couple of months ago. These ladies were and still are my rocks. They are stronger than I could ever hope to be. I love them with all of my heart and they remind me everyday how lucky I am and there is no room for whining or complaining on this journey when so many other people have to endure so much pain and loss. My heart is still breaking for both of them and I will never forget their children and hold them very close and deep in my heart forever.

On the Thurston front, I will go back about a week. He seemed to have been doing ok oxygen wise after his surgery maintaining at 6 liters at around 80 percent oxygen. But in a matter of a days, he climbed up all the way to 10 liters. We are very lucky that Dell has the ability to administer CPAP like pressure through the nasal cannula as it is so much more comfortable for Thurston and 10 liters truly is equivalent to him going back on the CPAP. They actually did put him back on the CPAP for a day but he just didn't tolerate it very well and kept taking it off as he is just too big now and can manipulate everything with his hands. They were THIS close to putting him back on the vent but the doctor did not think it would do much good anyway. Thurston is still an enigma to everyone. He still does not present like a baby who has a severe case of chronic lung disease( oh he has a pretty hefty case of it believe you me, but it just isn't as severe as his saturations shows). His respiratory rate is still very normal. He does not look like he is struggling to breath but yet his saturation dipped into the mid 70s and that is not good for long periods of time. Finally the steroid question popped back up on the table. This would be his 4th round of Dexamethasone which already has its risks but we always seem stuck, like we have to ask ourselves. "we either risk the dexamethasone, or risk him dying" Those pretty much have been our two options with Thurston at least on 3 out of the now 4 occasions we have used it on him. The good thing about the steroid is the bigger the baby is and the older, the less the risks of the steroids use. Doctors were using it on neonates when they were first born and for 2 to 3 months straight at high dosages in the 1970s and found out that it caused developmental delays etc. So the new studies from what I have read(and trust me I have researched the HELL out of Dexamethasone as well as talked to Several mothers who have also had to use multiple doses whose kids are older now who seem to not have any ill effects from it) seem to be a bit more mild(slightly lower IQ and smaller in size) and when the choice becomes whether my son lives or dies, YES those are MILD risks trust me. There are never ANY easy choices on this journey, but when it comes to life and death, the choice HAS to be that easy.

So he started back on the Dex about a week ago and I know how giddy everyone will be when I tell you he is now down to 2 liters of oxygen at 80 percent. BUT WHOA NELLY NOT SO FAST. We have just been down this path before. The only other time he has been that low was in July, after his 2nd round of dex. It did last about a month until he aspirated in August and where we almost lost him AGAIN. So I am going to CURB MY ENTHUSIASM for now and wait until he tapers off of the Dex and stabilizes. We don't know where he will end up once he is off of the Dex and how far he might rebound back up to. They are also not sure that a tracheostomy will help/hurt him(the surgery and afterward is GRUELLING and at this point could be more harmful than helpful according to one of the doctors...again it does not cure him it just gives him a different port to breath out of). The other thing is I talked to the doctor yesterday and they had done a ct scan of his chest, his first ever. I know you would think for a kid that has chronic lung disease um why had they not done this before. Well he just always was too unstable. But the pulmonologist was pretty shocked to find that his lungs, albeit definitely showing scarring and showing lung disease, was no where near as bad as they were expecting. So they are now thinking that it might have something to do with his heart which is what the very first pulmonologist said when he first came to Dell. So now they are trying to schedule some further testing, a bronchioscope, which they just don't think they will find anything from that as they don't think it is an airway issue, and a heart catheter, which I am more nervous about as this is a risky procedure, but they think they might find something that is causing his saturation levels to constantly be low even though he is not breathing hard. They are also puzzled as his blood gases always look pretty good as well which is another thing they would NOT see in a kid who had very very severe lung disease. So I guess there are some pockets of good news, riddled with pockets of puzzles and mysteries that have yet to be solved.

In the meantime, we have been so sick that we have not been able to see Thurston in over a week. I can guarantee that this nasty nasty cold that has draped our house would have most definitely killed him, and I am serious when I say that. I was up last night thinking about how scary it will be when he comes home and how even just a small tiny cold, let alone what we just got would be life threatening to him. But then I stopped myself....live in the moment Donna, live in the moment. There is no sense worrying about what isn't yet. Gotta just keep living day by day, worry about only what I need to right now, keep the sanity going. So I will both Curb my enthusiasm but also Curb my fear too and just continue to plod along, trying to be strong for my son, daughter and husband, and be forever grateful that we are still on this path, however shaky and uncertain it may be.


I know Natalie

I know Benjamin

postcards from the edge......

Sorry to give you whiplash but here it goes.......So as I was feeling pretty good about Thurston's recovery in the last post, this has turned out to be a very very very long and stressful week. I was already pretty exhausted from staying up all night Tuesday because Thurston was not given proper pain management, but Friday when I went into to see him the doctor called me right when I was going into the hospital and told me there have been some setbacks. I did not panic.....I am finally at a point of where I am able to do a wait and see before I react when it comes to Thurston. I walked up to his room and lo and behold he was under lockdown, with full on gowns, masks complete with a huge STOP before you enter sign. I knew right away that it meant that Thurston might have an infectious disease. I still did not panic....I was actually pretty proud of myself, I really am learning I am I am. I put on all the garb and went into see Thurston and to wait for the doctor for explanations. I took one look at Thurston thinking maybe he would look like the plague but nope, he looked completely normal, looking around, his color was great, he was satting pretty high 90s so I kind of thought, "well whats all the fuss about". Apparently Thurston had a huge coughing fit that morning and it was so bad that they thought it could only be one of two things; RSV or Whooping Cough(pertussis). The doctor looked at me with somewhat grim eyes and I almost wanted to laugh but held back. I said, "um I really really am not worried, Thurston looks really good, in fact better than ever. The doctor looked pretty relieved but said that they had to take every precaution, do some more testing and that Thurston would be on lock down until the results came in. They put him on an antibiotic that treats whooping cough and started swabbing away.

Ok so far so good right? WRONG.....well Saturday I went in and Thurston was having a horrible horrible horrible day. He absolutely could not be consoled at all and AGAIN I had to keep telling the nurse and pretty much anybody that walked by that I was concerned, what can they give him for the pain etc. I dont want to get into to much detail but I was again ignored, pooh pahed, and I started to get very very very upset. I felt completely helpless especially after the doctor finally came in and told me she would give some gas drops to help with the gas...WHAT...he is in pain. Finally Chad and Viola came(this was 8 hours later) and I lost my shit. Chad held Thurston and I took Viola into the waiting room, called my mom and just literally lost it. I think everyone heard me. The nurse came out of the NICU to check on me and I told her I just couldnt take it anymore. My son was in pain all day and no one was listening to me. Finally we all went back into Thurstons room and the doctor finally came back and was able to witness what we were talking about. Thurston was crying at the top of his lungs writhing in pain. She finally prescribed some morphine and did some xrays to make sure that everything looked ok.

Thurston was awake the entire day. He couldnt sleep, thats how much pain he was in, I was livid. Then right after the morphine sets in he conks out in my arms and then Respiratory Therapy comes in to give him his treatment. They put this mask over him to do it and I asked them if they could just do the nebulizer(maskless) and they said it isnt as effective. And here is where I feel like a horrible mother because I let them put the mask on my sleeping baby hoping that maybe he was so tired that he would just sleep through the whole thing, but he then wakes up in a panic and writhes in pain and I could only guess that he thought they were suffocating him, at least I think that is what it must have felt like. I was so distraught. I just couldnt believe they were doing this, why cant they just leave my poor baby alone. I was going to stay all night but I havent really slept much this week. The nurse on last night was amazing and I did feel that after he fell asleep again that he was in good hands and she promised me that she would call me if he ever got even an inch next to inconsolable.

Anyway, I went in today and he looked so peaceful and well rested. He was in no where near the amount of pain he was in and I finally talked to the director in charge and he said that all of these things will be fixed. There is more details involved and I am just way too tired to go into it but needless to say it is the opposite of carpe diem. I would rather not seize the last few days. Nothing is worse than seeing your baby in pain and not being able to do anything about it, feeling like no one will listen to you, feeling completely and utterly helpless. Im ok with him in the NICU when I dont have to worry about his well being and if he is feeling ok, I am not ok if that is not the case. This is a very draining expereience and trying to remain positive after over 7 months is exhausting in and of itself. I am grateful but also Chad and I are starting to become completely drained from this whole experience and we are starting to unravel. We are definitely living on postcards from the edge.

PS...Thurston does NOT have RSV and no one in their right mind actually thinks it is Whooping cough although they still have him on lockdown until the final results come back on Tuesday. WAnna know what I think? I think he was in so much pain that he started to hyperventilate and gag and cough on all of his saliva and tears. I think he just went into spasm mode. I wish I was there just an hour earlier I could have told them that. For now they think the pain appears to be both from sharp sharp gas or cramps in his lower abdominal area, and/or just a lot of residual pains from the surgery. I will update later I really need to get some sleep.....

Carpe Diem

Tu ne quaesieris, scire nefas, quem mihi, quem tibi
finem di dederint, Leuconoe, nec Babylonios
temptaris numeros. ut melius, quicquid erit, pati,
seu pluris hiemes seu tribuit Iuppiter ultimam,
quae nunc oppositis debilitat pumicibus mare
Tyrrhenum: sapias, uina liques, et spatio breui
spem longam reseces. dum loquimur, fugerit inuida
aetas: carpe diem, quam minimum credula postero.

Don't ask (it's forbidden to know) what final fate the gods have
given to me and you, Leuconoe, and don't consult Babylonian
horoscopes. How much better it is to accept whatever shall be,
whether Jupiter has given many more winters or whether this is the
last one, which now breaks the force of the Tuscan sea against the
facing cliffs. Be wise, strain the wine, and trim distant hope within
short limits. While we're talking, grudging time will already
have fled: seize the day, trusting as little as possible in tomorrow.

Horace

Before I update you on Thurstons progress I wanted to tell you about a beautiful woman I met a few days ago. Her sweet daughter entered the world a mere week ago, born a preemie at 33 weeks, but also born with a chromosomal condition, a condition that most born with die from, sometimes immediate, some in a few months and even fewer will live past a year. My heart bled for this woman. The strength she must have, to know that her daughter will only be here for a very short time, how much no one knows, and to have to at the same time ride the uncertainties of the nicu roller coaster, the tediousness of it all, my heart just gave out.
This family truly understands that every single day counts, that every day they have with their daughter is precious and not one to sit and complain about, that her time is so limited that every single ounce of every second cannot be wasted. They are truly my heroes.

I was able to talk quite a bit with her and her family and wax philosophy with them about the brevity of life, how our situations have changed us and I told them that it was quite a while ago that I just stopped thinking the inevitable question that ALL parents of premature babies ask. "when will my baby come home". I remember early on, I thought for sure Thurston was going to be one of those lucky ones that was able to come home around their due dates, give or take a few weeks. He seemed to have been beyond the horrible ups and downs those first couple of months of the nicu life bring and so I set up his nursery in anticipation of his homecoming. I organized all of his little newborn clothes, I hung vintage plaques of Bambi and Thumber and Flower above his changing table for him to gaze at while I was changing him, I put the glider in a little nook, dreaming about holding him late at night while Viola and daddy slept in the next room. I remember feeling so relieved that he was past all of the hard stuff and could now just move on to cpap, to nasal cannula, then ultimately to room air, just like most of those other little babes did in our NICU. Closing in on his due date, I started to realize that he would be there a little longer, especially as babies that were born 1 and 2 months after him were already at room air and he was stuck on the cpap. I began to get frustrated at the prospect of a couple more months and that is when my mom came back in July to help us out as we just didn't realize he was going to be still in the nicu so much past his due date. Then as he started to show signs of coming home, drinking his bottles of milk, breastfeeding, I was thrilled and so excited that soon, maybe my boy would be able to be home by the time he was 2 months old adjusted....then August hit us, Cold and swift, and I remember thinking to myself that week, please please if he makes it out of this, if he lives through this, I will never ever ever complain again about life in the nicu, I will just be so happy to have my son be alive and well. Well he made it out and I have not even once thought about it ever since. I truly have been changed. I don't even for a second think about when he might come home. I don't even care really. I know we will still be here for halloween and if Thanksgivng and Christmas roll by then so be it. At least now Viola can visit him so we will be able to spend those holidays together as a family, that is what is most important to me.

Anyway, I was telling this brave family that I have learned what Horace meant when long ago he inadvertently coined the phrase "Carpe Diem". Truly truly I enjoy every second of every day with my son. I don't care if he is in the nicu, I just care that I have the ability to go and be with him, to hug and cuddle him, to sing and talk to him, to kiss his sweet face all over. We are truly blessed that he is here with us. I cant truly remember the last time I actually thought that question,"when will he come home?" The only important thing is that he is still here and every single second I get to spend with him, wether it is in a nicu, at home, at the north pole, I really don't give a flying monkeys uncle where, as long as I get to spend it with him.


So Monday night we checked into the Ronald Mcdonald house. It is a few minutes walk from Dell so we felt it would be good to stay there for a few days so we could be close to Thurston. This place just makes it so easy for families in their time of need. I was very nervous so Chad and I decided that I would be with him the night before and Chad would get up early to be with him while he was being wheeled down for surgery. I probably would not have handled that part very well. It worked out great. The scariest part of the surgery for me anyway, was the anesthesia, and going back on the vent. I was nervous with Thurstons chronic lung disease that it would be difficult to get him off of the vent. Well, right after the surgery, we waited in a little room and the surgeon came in and told us it was successful and he did very well. He answered all of our questions and so we went up to Thurstons room where he was waiting for us. He actually was already awake and struggling with the vent and kept fighting it. He had a very scared and pissed off look in his eye, like"what the hell mom, why am I on this again!!!". So the neonatologist came in and I asked if there was anything we could do for him, he was just so uncomfortable, and with his wonderful british accent he said,"well lets just try extubating him and see how he does". WHAT....I was both excited and nervous. They were fully expecting Thurston to be on the vent for at least a few days, but this doctor is crazier than Doctor Maverick back at North Austin. It was only a few hours after his surgery so I really thought this guy was nuts!!!! He said, "well we wont know unless we try and he is not tolerating being on the vent so lets just see how it goes, if we have to reintubate him then we will but we wont know until we try"...Uh ok Ill be going downstairs for a cup of coffee, I just cant stay to watch.......So I go eat and come back and VOILA...my kiddo is back on nasal cannula at the same settings he was on before at 6 liters at around 80 percent oxygen. WOW.........

Anyway, he was ok that first day but during the night he was in a lot of pain and I kept trying to tell the nurse to do something but she kept dragging her feet. She was a very nice nurse but I just couldnt get Thurston to calm down, he wasnt getting any rest and he was practically crying and moaning the whole night. Finally at around 6 in the morning she called the doctor on call and they gave him a phyntinal drip and low and behold, THurston was soooooooooo much more relaxed and comfortable. I just hate pulling teeth with nurses, I mean I so respect them and they do such a great job, but occasionally they just dont listen to parents. I KNOW MY KID HE WAS IN PAIN!!!!!!! The doctor in the morning apologized and said that she should have given him the drip much sooner and that always makes a parent feel a little better that we are NOT THAT ÇRAZY. We truly just want what is best for our kid and truly, we know our kids well. Anyway, they started his feeds back up, THROUGH his g-tube and he will probably be back on full feeds tomorrow. We are very excited for him as he now has a fundoplication that will protect his lungs from reflux and microaspiration(and hopefully help protect him from an incident like the one in August) and he now no longer has to have that tube shoved down his nose poor little guy, that was irritating his throat and making him very uncomfortable. Only time will tell to see if this helps to reduce his oxygen needs at least to a point that he can be on a lower flow, and ultimately, so that we can avoid giving him a tracheostomy. We just have to be patient for our little patient.

So for now, we just have no idea about Thurston's future. All we know is that he is here with us now, he is as cute as a bug in rug, and that we are very lucky that everything so far has been working out at his new NICU and that he is on the path of healing, protecting, and getting the help he needs. Truly this whole experience has taught me that none of us know what our future holds, none of us knows how long we will be here. So when your kids wake you up at 3 in the morning, just know no matter how tired you are, rather than looking at it as an inconvenience just think about it as an extra hour or so that you GET to spend with your child, what a privilege it is to have that little being in your life. I know, especially being separated this long from my sweet beautiful son, that life truly is all about carpe diem!

Tuesday Afternoon.....

Tuesday, afternoon,
I'm just beginning to see, now I'm on my way.
It doesn't matter to me, chasing the clouds away.
Something, calls to me,
The trees are drawing me near, I've got to find out why?
Those gentle voices I hear, explain it all with a sigh.



So we have gotten a lot done in these past 2 weeks at Dell. Thurston has had a ton of specialists look at him and has had a real swallow study done and an ENT look down his throat as well. The good news is that his vocal chords are normal and not damaged(we were a little concerned as Thurston does not have a strong cry and it is rather raspy at times). Everything looks normal but he does have some irritation where the NJ tube goes down his throat. The bad news is it really seems as if Thurston has some very severe reflux. He is often very uncomfortable and coughs a lot as well as gags and chokes. I had noticed this in early August as well as some projectile vomiting right before Thurston took a turn for the worse. The doctors have tried every medication, a 24 hour feeding schedule, and an NJ tube that bypasses his stomach to his intestines to no avail, he is still coughing and gagging a lot and it is still making him sooooooo uncomfortable and so now the doctors think that having a gtube/nissen fundoplication( a feeding tube that goes directly in his tummy, and a fundo is placed around his esophagus to prevent contents of his stomach coming back up which will prevent aspiration) will help him immensely with reflux and with oral aversions caused by reflux as well as making him oodles more comfortable as we can say goodbye to the NJ tube down his throat. I cannot even imagine having something stuck down my throat 24 hours a day and it does not seem there is an end in sight due to his high oxygen needs,(Thurston most likely will be on oxygen for a while even at home probably for the next year of his life, his chronic lung disease is very severe).
The other hope with the gtube/fundoplication is that it will help reduce Thurston's oxygen needs. The thought is that because of his severe reflux, Thurston is probably micro-aspirating into his lungs. This micro-aspiration for more healthy babies(Viola being one of them as she also had severe reflux when she was a baby) usually does not effect their lungs. But with Thurston, his lungs are just so fragile and delicate, that even the slightest amount can not only cause higher oxygen needs, but like in August, cause a major life threatening event(pneumonia). So the doctors are hoping that within a month or two after this surgery, Thurston's oxygen needs should go down enough and hopefully to a lower flow(2 or 1) and maybe even low enough that he can finally finally come home(1 liter or less). Its just a wait and see but I truly do feel Thurston will at the very least be a lot more comfortable and his coughing episodes will be eradicated and he can just be a happier more well adjusted baby.


So for now the idea of a trach is put on hold, and we will just hope that this will help him avoid that. His surgery is scheduled for Tuesday afternoon and we will most likely be staying at the ronald mcdonald house for a couple of days so we can be close to him while he is recovering. The most nerve wracking part of the surgery is that he will have to go back on the vent and it might take him up to a week to get off of the vent as he will be sedated for a while to alleviate the pain from the surgery. So we have to expect his oxygen needs to go up and that will be hard for me to take after he has been doing pretty well so far hanging out on 6 liters at around 60 percent oxygen(this hospitals nasal cannula goes up to 8 liters which is awesome as he does not need to go back on cpap at all, another reason to love Dell!!!!)I just hope that his recovery will not entail complications and we can move forward with his recovery.

Thurston also got his RSV shot the synagis(a very expensive shot (1000 dollars a pop) to protect him during rsv season. He will get 1 shot a month through April. Wow talk about an expensive kid.

My mommy is leaving on Saturday, unfortunately, as it would have been great for her to be here for his surgery, but we have had so much fun with her here and it has been incredible to get so much help for so long, we are now officially spoiled rotten. Life at Dell is good though and our stress levels have been significantly reduced since moving Thurston here and just to be able to bring Viola with me anytime I want and/or need to has made our lives much much much more simple and much much more beautiful to just be a family. I love how Thurston and her interact with one another, its just plain cute!!!!!

So next week will probably be a little tough, but we will get through it like we always have, one step at a time, one evening at a time, one morning at a time, and one Tuesday afternoon at a time.......