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.......

"Dell"ightful!!!!!

So its been a few days at Dell Childrens hospital and already, we are thrilled and settling right in at our new NICU residence. The exiting news is that Thurston already, in this very short period of time, has been looked at by almost every specialist that must exist. He has been seen by two pulomonologists, a GI specialist, an ENT specialist, a heart doctor, and of course his Neonatologists as well as ot, pt and a life care specialist. The absolutely wonderful thing is the first day we were there, both the neonatologist and the pulmonologist took one look at Thurston and said....ummmm this kiddo does not look or present like a trach kid, with both of the docs saying, "wow, we were expecting a lot worse". WOW WOW and more WOW. Now by no means did they mean Thurston is not sick but I think both of them thought that we need to investigate Thurstons case a lot further before we even think about giving him a tracheostomy. The neonatologist even said he would rather wait even a couple more months and do some further testing then to trach him just to get him home....music to my ears. All I want is the best for my son whatever that entails and in the end, like I said before if he needs a trach than thats what we will do but so far, no one is in a hurry to perform any operation, and everyone seems to think we have some time to do some investigation before that might even be a possiblity. They both also said that they have never really seen a kid on the nasal cannula that needed a trach and the kids that were candidates for trachs are usually vent dependent, not breathing on their own etc. So that was very reassuring. The pulmonologist said that his excessive oxygen needs might also stem from some mild pulmonary hypertension and they are also investigating reflux as a possible culprit as well. So they are switching around some medications, giving him some lasix, doing some more echos on his heart, putting him on nitric(which treats pulmonary hypertension)and they are nj tube feeding him where the tube bypasses his stomach and goes directly into his intestines, with the intention of trying to reduce his reflux, gagging, and incessant coughing episodes. All of this is hopefully going to help reduce his oxygen needs and at the very least, make my kiddo a little more comfortable. Wow, they are really switching things up quite a bit and doing a lot in such a short amount of time.

The next most beautiful thing to happen is my sweet daughter and sweet son finally got to meet face to face for the first time. It was so sweet. The child life specialist gave Viola a doll first that had all of the tubings and wires that Thurston has to prepare her, allay any fears she might have when she meets him, and see how she would react to all of the medical equipement. I have to say, I almost wish we would have moved to Dell sooner, like a few months ago. They really specialize in so muh more than just medicine and we feel like we are such a huge part of Thurstons life now, they really make you feel like a family and that you are just as important as the patient is, now thats what Im talking about.

Viola was so exited. The first thing she did was to put the pacifier in Thurstons mouth. She stroked his head and he just kept staring at her almost as if he recongnized her or something. Then before you knew it, she gave him the biggest most beautiful hug ever. It was such a beautiful day. By the way, I was able to actually leave my mom with Thurston alone when I went to pick up Viola from school. Wow this place is so freeing.

So for now, we are still just trying to figure everything out. Nothing has been ruled in or ruled out, but at least we are on the path of discovery. Needless to say, we couldnt be more "Dell"ighted with our new residence and just hope that we can soon move forward and finally get our kiddo home where he belongs.

Here are a few recent pictures:



Thurstons new digggggs!!!



Awwwwww Brother and sister touching each other...look at Thurston trying to copy sissy!!


Are you sure she's my sister mom?


Viola giving her brother his paci, already mommys big helper!!!




Our first real family portrait...boy are we ever happy!!!!!

Bicenntenial days...200 days and counting...

I had previously wrote a very nervous and scared post. As I had stated we needed to make some decisions that involved both transferring him to a different hospital and also considering some surgeries. These are both very scary decisions to make and not easy. I am not a willy nilly person. When our dishwasher broke, it took me almost a month to research, and investigate the kind of dishwasher i wanted, the sales going on, I went into stores to try them out, I just really wanted to get the best value for my money, and be happy with my decision with no regrets. Well obviously when it comes to your child, I don't think any parent is going to enter into decisions, especially ones that could involve the life of your child, very lightly. I mean when you go buy a car you always take a test drive right? I know for some it may have seemed like I was dragging my feet, and maybe for a few, not making the best choice for my child, but I felt I had to investigate thoroughly every option for Thurston, so that I could make give him the best informed decision. My child is not a dishwasher or a car, he is a human being and I just needed to make sure that this was the right move for him. If the doctors had told me it was life or death or told me that it was urgent, obviously I would not have hesitated at all, but I had time to do some research and I am so glad I did.

Last Friday I made an appointment to go to Dell Children's hospital to see what it was like. I felt that that would help alot in allaying any fears I had especially as i had heard that the rooms were private. Now for you and I, if we were in the hospital, a private room is pure heaven, but for my sweet baby, who is so used to an open space or a bay as they call it, where EVERYONE and their mother(literally) walks by and says hi to him, talks to him, where he can hear a million conversations, it was very comforting to me to know that he was never ever alone and that he would get all the attention in the world. He is a social butterfly and LOVES to be around people, so that was very hard for me to swallow.

Secondly, I was not sold on the idea of my son getting a tracheostomy. Not that I wouldn't do it in a heartbeat if I felt that is truly what he needed, but I just had this little tick tock inside of me that was telling me not to rush into it, something just didn't seem right about it. Mostly because my son has never had really any testing or specialists looking at him. He has never even been seen by and Ear Nose and Throat doctor, his airways have never been evaluated, he has never been seen by a GI specialist, or a heart specialist for that matter. He has only been seen I think a couple of times by a pulmonologist but to me I just felt, not all of our options have been investigated, he deserves to have every possible scenario exhausted before he just simply "gets a trach" Now if for some reason all of these things are looked at and the ultimate conclusion is to give him one then so be it. But I don't think anyone would even consider an invasive surgery for even themselves let alone their children, especially one so life altering as a tracheostomy, without first exhausting other possible causes of their condition, and perhaps other treatments available.

So before visiting Dell, I was terrified. Besides the whole private room thing, we would have to adjust to all new nurses and nursing styles, new rules and regulations, new procedures, new policies, I just felt almost as if we were back to square one in a lot of ways. Also the drive is a bit further, and most importantly, I was petrified that all of the doctors automatically assumed my son would need a trach, that they would have a preconceived notion about my son and it would already be in their heads and that they wouldn't actually investigate any further what else could really be going on with my son.


OH BOY WAS I EVER PROVEN WRONG.......

First and foremost the NICU rules and regulations are OUTSTANDING and so much less restrictive than NA. Now I am in no way denigrating any regulations at Thurston's old NICU. Those rules and regulations have to be in place as Premature babies are so extremely fragile, its an extremely sensitive time for the families as there are soooooo many ups and downs and uncertainties etc. And most importantly, they expect most preemies to go home by their due dates, so it is unusual for most families to be there as long as Thurston, as any baby needing more support surgeries etc. will usually transfer out of there. So I fully support and am so grateful for those rules that were in place that protected my son in the time that he was there. Because Dell is a children's hospital, they take into consideration the fact that most of the children there have long term chronic illnesses and there is no way to predict how long the families will have to be there, so their rules and much more relaxed and geared toward making the families lives much easier. Here are just a few things that Chad and I were thrilled about:

First and foremost, FINALLY Viola and Thurston can meet face to face and spend some real quality time together. Because viola is on a delayed vaccine schedule, she was not allowed into our NICU(again I totally understood this and supported that) but now I can bring her in every day so they can finally get to know each other. Plus, if I want to go see Thurston I don't have to have a babysitter....I can just bring Viola with me, wow that takes a ton of stress off of us right there. After hearing this, I was sold!!!! That was almost reason enough to move Thurston.

Second...They do not ever close. Chad used to have to wait until 8 o'clock to go into the NICU to see Thurston which meant he had to stay at work an extra hour which meant that he came home later. Also, there were times that I was only able to go later in the day and would have to leave by 630 cutting short my time to be with him. Now we can go in any time we want, whenever we want, and stay as long as we want, which is very nice indeed.

Third...I can bring in any visitors I want any time. We were limited to only 4 visitors the entire 7 months we were in the NICU. That was hard on us as our family lives far away so when we signed up Chads mom and dad, that took up 2 of the spots and they only went in 2 whole times when he was first born. We signed up my friend Karen who also came to help us for 2 weeks and she only saw him about 2 times and then she went home. Then one spot was left when my mom came to visit and then she went home after 9 days. The director was nice enough and understanding of our situation and allowed for us to sign up Chads brother Brad who was only in town for 5 days. So Thurston literally only had probably 10 total visits from other people beside Chad and I in the almost 7 months that he was in the NICU, while other families who had family in town were able to bring them in daily. So we are excited that Thurston will now be able to meet more of our family and friends. More YEA!!!

Fourth...We get to sign up 4 very special people, who will be able to come see Thurston on their own, without Chad or I having to be there. This also will be incredible as we will have more people to give him lots of love and holding when Chad and I cant be there.

Fifth......They have volunteers who come in and spend time with the kiddos. They also have a child life program that includes development, OT, pt, speech therapies, and incorporates Viola in the mix to help her adjust to her brother and his hospitalization. FANTASTIC!!!!!

Sixth...Just a silly thing really but as a nursing mother, they feed me!!!! Yup I get to order from the cafeteria and they feed me for free...Hey Ill take it!!!!

Seventh.....Ok remember my post about HATING those damn sticky labels and the amount of time it takes to clean the bottles for my milk...WELL they provide all the bottles and do not reuse them so I never have to wash another bottle, or try cleaning the stickies off of them ever again. AND I get my kitchen counter back...It does make me cringe a little about the waste of plastic, as an avid recycler, however they said that breast milk is a bodily fluid so for germ purposes they cannot reuse the containers....Hey Ill take it, It would be nice for the break and free up some extra time for me to do other things yea!!!!

Eight...within the private rooms they actually provide my very own breast pump. I don't have to go scrounging for one ever again and the nurse don't have to either YIPEEEEEEEEE plus it is very sanitary to do it that way, so you don't have to worry about other peoples germs...

Ninth....They want me to use my fresh breast milk, and not my frozen if they can help it, and they are now giving Thurston 100 percent breast milk fortified with neosure so that is fantastic

AND drum roll please...the tenth and obviously most important reason is that Thurston will be evaluated by every specialist known to the pediatric world. They are all there, just popping their heads into the room, and it is great to get a ton of new ideas as to how to fix my poor little sweet boy. All of the doctors at NA told me that Dell was the best place for him for this reason alone, and were huge proponents of him moving there, I was just so nervous. We have built a family at his NICU, I love all of his beautiful nurses, RTs, Pharms, Doctors, Receptionists, custodians etc. and they love my son with all of their hearts and souls and I am indebted to them for life. But after leaving on Friday, it just was a no brainer for me, my fear flew out the window and I knew that this was the place for him. It was very emotional to leave however, and I cried the whole time. It was just to painful to say goodbye to everyone. I will have to pop in later, when things are settled to thank them properly for everything they have done for us.

So on Tuesday of this week, just one day shy of his 200th day of life, his bicentennial day if you will and just a just a few short days after my visit to Dell, we traveled to my sons new residence. It was his first trip ever outside and of course, he slept through the whole trip, how funny. A new post of how his first couple of days went will follow this one but just wanted to update everyone on the move.

Fundraiser for thurston

My dear sweet mamas group is holding a fundraiser for thurston...I like to call it a thurst-a-thon. Anyway here is the site. Wer so grateful and a big thanx to Melanie for putting this together

thurst-a-thon

Decisions, decisions....

Today was a very stressful day. We have to make some very very tough decisions about our son. I am pretty broken up. I hope no one ever has to make these kinds of decisions for their children. It's just very stressful and painful.

Candide, The garden of forking paths and The persistence of memory.......27 weeks and counting....

First not too much to report on Thurston. He is still on nasal cannula and they decided to lower his liters and put him on 100 percent oxygen, much like they were doing in August right before he took a turn for the worse. He had a swallow study done where they found he was NOT refluxing so we need to do some further testing to make any more forward moves. They have talked about trachs and gtubes but we are looking into getting some more testing done before we make any decisions. We still have no idea when he will come home and how. We are kind of in a holding pattern. But for now, he seems to be doing ok and is still the king of the NICU, adored by everyone who meets him.
Its hard to believe, but as of yesterday, Thurston has been in the NICU as long as I was pregnant with him, 27 weeks. WOW. Coincidentally it was this week last year that I became pregnant. I often think about all of those early happy memories, the dreams that I had of my pregnancy, how happy I was when I found out a few weeks later, the thought of my two kids taking baths together, what Violas reaction would have been, the playdates we would have went to etc. Those futuristic dreams are now distant memories. I often think of what our lives would have been like had everything been normal, like I am forever trapped in a Luis Borges novella. Every day is a struggle to remain positive and hopeful but I actually find that recently, I have been moving forward with my life, with our lives. There is something about this entire experience that paralyzes you, you feel as if you cannot move. At first its because literally you are like a deer in headlights, you cant believe any of it is happening, you feel like you are walking around in a Salvador Dali painting full of ants, melting clocks, and vast landscapes that seem to go on forever and nowhere at the same time. Then as you settle into your new world, and routine, you don't really plan because you think, well, he will be home soon, its just a matter of time and then after he comes home, you will settle into a routine and then move forward into the future, into your new life. Then suddenly, you realize, there is no end to this, it could be another 4 to 6 months maybe even longer.

But this last experience with Thurston in August when he had a 50/50 chance of living, I realized that I cannot just sit and wait, I must move forward, I have another child at home, I have a husband, and I have myself to think about as well as my son.

Right before all this happened I decided to open up a vintage shop on etsy, called Dust Bowl Vintage. I have such a passion for the early 20th century, mainly, the Edwardian, Flapper and Depression eras. I also love to sew and wear fashions from those eras so I thought, even with a newborn, I would find some time here and there to dedicate to those endeavors, those passions that I have had nearly my entire life.
I was also in the midst of planning things for my little girl who is growing up so fast. Swimming lessons, dance and/or gymnastics, playdates, preschool were all on the horizon when in February we found out my pregnancy was in jeopardy. My husband was supposed to finish his Masters Thesis as well this past semester in college as well as work on finessing his musical prowess by taking private lessons. All of us had so many goals that stopped completely in their tracks. Life completely halted.

So for about 7 months now everything has been put on a back burner. Our lives became just about survival and hard choices. Everyday our choices revolve around the NICU life, and now instead of "should I sew", "should I work on my thesis", "should Viola take a gymnastics class or a dance class", the choices are now; "do I spend more time with Viola today, or should I go see Thurston"; "do I pump before I go to the NICU or wait until I get there", "should we consider getting him a trach and gtube, or should we wait and just let his lungs heal" etc. Chad has always had to work fairly late, but tried to get home to at least be able to see Viola and read to her before bed. Now he has to make a choice; "Should I see my son after work, or do I go home to see my daughter", not a choice I ever thought myself or my husband would have to make, especially for this long. It is hard, I will not lie. Sometimes I feel like people who are undergoing something like this somehow are held to higher standards, like we have to be more stoic, less whiney, or something, that we are not allowed to ever ever complain or occasionally look at the glass as half empty instead of half full. But every day I see people bitching and complaining about their normal lives and their woes......I think we are entitled to the same privileges.

One of the preemie moms on my preemie message board the other day asked how I remained positive after reading my post "a grain of salt and a pound of hope". I told her that it is BECAUSE I allow myself to feel depressed, scared, sad, whiney,and freak out, etc. How can anyone go through something this life altering and not have a bad day....normal people with normal lives have them all the time, why cant I. The other day, I stopped in a parking lot and just balled my head off for about 15 minutes, completely freaked out and then I felt a ton better. I told her the key that I have found to keeping positive IS by allowing yourself to feel all of the other stuff but just not allowing it to take over. There is a very poignant scene from the tv show "Lost" where Jack tells Kate how he conquers fear:
Lost Scene
This is how I now deal with our situation, I allow myself to feel all of the anguish, depression, and sadness, I allow myself to feel sorry for our situation, and to freak out, but only for a very short time, I don't let it consume me anymore, but I also don't pretend that I am made of steel either. This has allowed me to move forward and to ask for help, and we have received a ton of it lately; just this week I enrolled Viola in both a moms day out AND a dance class. I went thrift shopping for the first time in ages(thanx mommy) and found 10 vintage outfits that look like they walked out of those eras that I adore so much, hell I even fingerwaved my hair today, something I have not done since January. Chad has been working on some side projects for people as well. My moms group is organizing a fundraiser to help us out with the unforeseen costs of having a child in the hospital this long(love you guys!). It seems our lives are slowly but surely moving forward. Most days I am very happy and very grateful and although I envisioned my garden going down a different path, that I will not have that ultimate nirvana that I dreamt of, I realize that I must live in the here and now...as in the great last line in Voltaire's exquisite satire, "Candide", "we must cultivate OUR garden", the only one that truly exists.

GOING THE EXTRA "S"MILE.............

So its been a while and lots to update. First and foremost, my mommy is back in town....FOR A WHOLE MONTH...wow we really have had a ton of help lately and I just cant believe how lucky we are to have my mom back for so long(thanx Juju and Mimi, Shannon, Lonnie, Patrick, Trish and Winnie for helping with everything else). That's going to help a ton as Thurston is now 3 months old adjusted and needs alot more mommy and daddy time to work on his milestones, or should I say SMILESTONES.......

I know I previously posted he smiled and he did but it wasn't necessarily a social smile, you know the kind where the baby actually KNOWS that he/she is smiling at you, in response to your smile etc. As any preemie parent will tell you, especially in Thurston's case where we were told about all of his high chances of having alot of neurological issues, any and all milestones are huge, bigger than huge, because we are told early on that our children may not achieve them. Well this baby is just yet again, "proving those statistics all wrong". I remember that I told everyone I would shout it, scream it when I saw that first social smile, the one that every parent waits for with bated breath, the one that melts your heart...Here I am SHOUTING FOR JOY WHHHHOOOOOOOOOOOHOOOOOOOOOOOOOO. Well not only did we get one but we were recording it while he did it. How lucky was that. It of course made me tear up, cry even, it was just priceless:





He is also doing everything a normal newborn should so far....he is reaching out and trying to touch things, he looks around at different objects with intense interest, he is starting to coo just a little, he kicks his little legs and arms, just like a normal sweet little newborn should, we are just so relieved and delighted. I think everyone is. He is also 9 big ol' butterball pounds which is still under the 5th percentile, but he is acutally in the 13th percentile for his height(22.6, according to the average percentile charts) which is absolutely unheard of for a micropreemie, growth restricted, IUGR baby. Way to go my little man. I am just so proud of my son.

Another incredible joyous tidbit of info, although I was not really surprised to hear this(no pun intended) is that he passed his newborn hearing test...YEA....that is just one more thing we can check off the worry list. Thurston always showed signs that he could hear so it wasn't something I was ever truly concerned about, but it sure is great to have it verified by the professionals.

On the medical front not a whole lot has changed. He is still on the nasal cannula at 5 liters anywhere from 40-80 percent oxygen. They did finally wean him off of the nitric oxide as they do have plans to do a swallow study and an MRI which they need to transport him for and a nitric tank would be quite cumbersome to do that with. He still cannot eat by mouth as they want to do the swallow study first to make sure that he is not aspirating while he eats so he is still being fed through the ng tube. They also have him on a continuous feed as they think it is helping with his reflux and oxygen needs. He is still on too many medications to list, but hopefully they can begin weaning him off of a few here and there, especially the seizure medication once they rule out any neurological issues(see...hows them positive apples for ya).

When I was checking his chart today to see how much he weighed I had to do a double take at the day he was on in the NICU.....181 days and counting.....GULP...After this long you just kind of stop adding it up but that just kind of threw me for a loop. And the truth of the matter is, Thurston could quite possibly still be in the NICU by his first birthday, and yes that is a very daunting thought, but we continue to be grateful for all of his progress and we feel so lucky that he is such a little fighter. He shows me everyday what true strength is, what an unbelievable and tenacious spirit he has, and honestly when I think of how much this little Buster has been through, there are no amount of miles I have or will travel back and forth to the NICU that compare to how many miles he has traversed to be where he is, how much he has endured to be here and to stay with us......this kid truly has gone and continues to go the extra mile!!!!!!!!!

about the pics

so my nurse Ami is crazy about me and has stored all of these pics of me for my mom and dad.........my mom and dad have more on their web site and in their camera and one day my mom will interate them into the posts as well but for now this was the easiest and quickest way to get a bunch up so enjoy them.

pictures

One of my first smiles!!!!


My mom is crazy..


Ho Hum!!!!

pictures

Who little old me?????


Whatch you talkin bout willis?


Well you dont say hmmmmmmmm....


Whew, this place wears me out!!!


Oh god, not another Glowie picture, sheeesh mom....

pictures

Ok let me see how many days Ive been in the NICU..one..two..three......


Ok Ok so Ive gained a little weight, so sue me!


Its mine its mine its all mine, hands off!!


Its just not fair I tell you!!!


I think I can I think I can I think I can...I know I can I know I can....

PICTURES

Im just plain cute arent I



Who me? I didnt do it!!!


Damn I knew I shouldnt of had that extra bottle!


Pst Glowie, I gatta tell you sompin!


Here I go being cute again!

BPD.. aka...Big Pain in the Derriere.....or "just keep swimming'......

So the best way I can describe BPD to anyone is to think of someone with emphysema and now think of my poor little 8 pound baby.....with emphysema. Here is a link with a very extensive description and outcome of BPD:

BPD



This disorder is extremely serious, and as we have seen, can be potentially deadly. If Thurston had a milder form, or if it resolved somewhat, he would have been home almost 3 months ago, around his due date which was June 4th. I have a bet going with my new Nicu friend, Questa(the coolest name ever) that her little one, whose due date is in 6 weeks, will be home before Thurston, and this will most likely be true. Her daughter was born at 26 weeks and weighed just an ounce more than Thurston, and has also has had some major and scary complications, BUT, she does not look like she will have BPD and actually weighs almost as much at 34 weeks than Thurston did at his due date(40 weeks). BPD takes so much out of a child that Thurston just burns more calories than he can take in, which is why he gains weight more slowly than most kiddos.

So yes they did put him back on the nasal cannula, but I have been extremely hesitant in posting this because, he is at the highest settings(5 liters) and his oxygen needs keep creeping up (in the 70s) so I am sure at some point, he may have to go back on cpap. If that is the case, we may have to talk about getting him a tracheotomy in order to get him home with a g-tube(two surgeries I just dread putting him through). If for some miraculous reason he stays on the cannula, then he would probably just need to stay put in the NICU for quite some time, he may even still be there by his March 8th birthdate. We of course are sad about our situation, and I try not to stop and think about it because if I do, I usually break down.

One of the hardest parts of having a child in the hospital for an indefinite and long time, besides the obvious(having him separated from you) is the inability to plan ahead. You watch as everyone elses' lives move forward....people take their spring breaks, then their summer vacations, enroll their children in dance classes, swimming lessons, preschools, etc. You are literally stuck in limbo. Chad and my anniversary came and went without as much as a harrumph, I dont even think we got each other cards, you just never know how the day is going to unfold, and then you just get so caught up in it all, you never get around to even belatedly celebrating it.....You cant really plan a vacation or even a short getaway, because you cant be away from your child in the hospital for that long. Hell we feel guilty when we skip a day here or there, due to illness or just pure exhaustion(you can only keep up this pace for so long before you get burnt out). You cant enroll your other child in anything because you have no idea when your other kid is coming home, and in Thurstons case, they have strongly advised us to keep Viola out of any kind of daycare, or any other activity that involves any close contact with other children and circulation of germs after he comes home which pretty much rules out, well almost everything. You also don't know when a crisis might hit and what little activities you do make you end up having to cancel (dinner date, birthday party) to go up and talk to the doctor, or just to see your son. Most people do not understand this pace, this crazy lifestyle, unless they have been through a very long hospital stay with a family member they have to see daily, for hours at a time. After 7 months of this whole ordeal(thats when we found out something was wrong with the pregnancy and then I had to go on bedrest)It has become very gruelling, unpredictable, tedious, scary and just plain draining.

I was just thinking last night I so wished we lived closer. Like 5 minutes away. I would be able to pop in several times a day on the weekends and try and find help here and there with Viola. The drive just takes a lot out of you.

So we are still no where near coming home, I wish I had more upbeat news about that. In the meantime, my boy is being well taken care of by his nurses who adore him. When I come into visit, sometimes Thurston doesn't even recognize me though and searches for those that take care of him day in and day out. That makes me a little sad, well alot sad really, but also grateful that his nurses truly treat him as if he was their own child, I couldn't be more happy about that. I keep trying to tell myself daily to, in the simple yet profound words of Dore from Nemo, "just keep swimming".....I just cant wait until we can finally reach the top of the ocean and both Thurston and I can breathe in a huge gulp of beautiful oxygen-filled air.

If you want the rainbow, you must have the rain.....

If you want the rainbow, you must have the rain sung by one of my all time favorites, : Annette Hanshaw


So here we sit, 24 weeks later, 168 days, 6 months, longer than how long I was pregnant when I found out something was wrong with my pregnancy, and in three more weeks it will be as long as I was pregnant with him(27 weeks) which we will most definitely still be here. Chad and I were walking into the NICU today in disbelief at how long we have been doing this, driving to the hospital, climbing up the stairs to the second floor, pushing the button and waiting for someone to buzz us into the nicu, scrubbing up for 3 minutes, etc. but also, we are completely grateful that we ARE still doing all of this, especially in light of the last few weeks, we really get how lucky we are, so no complaining or whining here!!!!!!! Remember ye ol post of "it can always be worse"...well it got worse, and we are ecstatic that he is back on track. Right now my little Buster is 8 pounds 6 ounces, 22 inches, and his head measurement is 14 and 1/4 inches, his head circumference is now bigger than his height was at birth (11 3/4) which just amazes me how tiny he really was.

Right now he is doing swimmingly on the cpap. Today they got him down to a pressure of 5, 4 being the optimal point at which they would finally be able to switch him back to the nasal cannula, which could be sometime this week if his oxygen stays as low as it has been(between 25-40 percent). They tried to wean him off of the nitric oxide but his oxygen went up, so they decided to keep him at a rate of 5 and said they would also continue to give him the nitric on the nasal cannula which is fantastic as it helps to keep his lungs to stay open, and does not have any major side effects, so to get him back on the nasal cannula would be great as it is way more comfy. We also are able to hear his sweet little voice again, just barely, as when he was intubated it strained his throat and when he was extubated he loses his voice and he sounds like a kitten who has been smoking 2 packs of cigarettes a day. And most importantly, we get to cuddle again, and let him melt in our arms as he drifts off to sleep.

During all of this time we have had the lovely pleasure of a couple of folks, Janut and Jim, who have become dear dear friends of ours, and we hope to one day see them up in there home town of Seattle. They are amazing wonderful people and have done so much for us these last three weeks. They came at the most amazing time, right when Thurston took a turn for the worst and we are unbelievably grateful for all they have done for us, watching Viola, cooking up some great meals, cleaning, and most importantly, being great company and lending some wonderful sympathetic ears. Again, I am actually in the process of writing my thank you post, making sure I detail every single person who has helped us on this crazy journey that I will post once Thurston comes home. I say this time and time again but you will not meet more grateful people. We just cant believe the love and outpouring of support we have received and it has made me feel so wonderful about humanity in general. Hows them apples for you.

So yes its been a long journey and it is no where near being over, but ultimately, this has taught me so much, that in life sometimes going through something really bad makes you realize how lucky you are, how much you take for granted, how beautiful life is and can be. Sometimes if you want the rainbow, you must have the rain.

please help me.....

Two preemie moms and their kids lie heavy in my heart and no matter what I am going through, I always think of them and their unbelievable struggles. One of the moms lost her child today. I write this with such a heavy heart. The other is still going through her journey and I am hopeful everyday that her child will pull through just like Thurston has on so many occassions.

If you could find it in your hearts to think about, pray, send good vibes, whatever it is that you do, they need a ton of support right now. Thank you so much.

That really sucked!!!!!!! and WHEW!!!!

Ok so no cutsie titles, puns, or cultural affinities, no song or book titles or film references..... I just want to say the last two weeks really SUCKED!!!!!! And I also want to add a big gigantic WHEW. Dr. Maverick as I like to call him, decided yesterday to try out Thurston, not on the regular vent, not on the cipap, but the cpap. Now for those of you not in the know, this is the linear order in which a preemie usually navigates the breathing process, as the vent gives a little less support than the oscillator, the cipap acts like a vent in that it helps gives breaths(usually like 15 a minute) but at a much lesser rate, and the cpap just gives a lot of pressure and is the same device that is used on people who have sleep apnea/snoring issues, so the person is breathing on their own but aides in giving the person constant pressure to help keep the lungs "open".

Anyway, the Doc called me yesterday and told me "well we decided to try Thurston on the cpap and so far he is doing pretty good". I about peed my pants. And just like that we went from 0 to 60 in the forward direction, much like we had in the reverse direction just 2 weeks prior. Basically, the doc said that Thurston got a bug that pulled the rug out from underneath him, he fought it and needed a lot of extra support while he was in battle, and now he is on the mend. That's how horrible it is when my bub gets sick, it truly is life or death, damn Chronic lung disease. So for now he is resting comfortably, doing pretty good on the cpap, and will just need some more time for him to recover completely, and a lot more time for his lungs to grow and heal to a point where he can come home safely, and we hope and pray he doesn't get sick anymore. That was just way too scary...You know they tell you that the NICU journey is like a roller coaster ride, well our particular journey has been more like a roller coaster ride where you reach the highest peak, right before you start the downward drop, and you realize your seat belt is broken.........yea good times good times!!!!!

"Smile" by Charlie Chaplin

Smile, though your heart is aching,
Smile, even though it's breaking.
When there are clouds in the sky-
You'll get by.
If you smile through your fear and sorrow,
Smile and maybe tomorrow
You'll see the sun come shining through
For you.
Light up your face with gladness,
Hide every trace of sadness.
Although a tear may be ever so near,
That's the time you must keep on trying,
Smile, what's the use of crying?
You'll find that life is still worthwhile,
If you just smile.

"Smile" is a song, originally used as an instrumental theme in the soundtrack for the 1936 Charlie Chaplin movie Modern Times. Chaplin composed the music(if I could figure out how to put music within the posts I would put this) http://www.youtube.com/watch?v=Ps6ck1ejoAw
lyrics were added in the 1950s and sung by many a crooner.......

side note: I was able to publish two more back posts entitled "welcome to the jungle" and "on the third day he rose again" in the March archives. It chronicles the first day he was born and the third day of his life".........



So we sit here almost 2 weeks after Thurston's downhill spiral and not a whole lot has changed. They have pretty much ruled out an infection of any kind which is the good news. The not so good news is he is still needing a ton of support to breathe and we just don't know what that means. They decided to do a third round of dexamethasone steroids on him, as his settings are so high on the oscillating vent that if we waited too long, well, it just might be too late. He is also getting lasix which is a diuretic to extract fluid from his lungs, so hope that will help as well. They have also started feeding him again, starting off at 5 ml every three hours and today they upped it to 10 so hopefully within a week or so they will be back up to full feeds and they can take his tpn out(total parental nutrition) where he has been getting nutrition through an IV. We also don't know how much he weighs as when kids are sick, they don't weigh them that much as they are just trying to maintain his survival, and even if they did, I just don't bother asking as there are so many other questions I usually have for the nurses and doctors.

The incredible news is that my sweet boy is acting totally and completely normal. He is playing, sticking his tongue out at you, looking at all of the nurses out of the corner of his eyes wondering what they are going to do to him next, and the best part is he is smiling. Yes my sweet boy started to smile, a developmental milestone I would have preferred happen when he didn't have a tube shoved down his throat, but it just melts my heart, tickles my cockles and proves to me over and over again what an incredible, beautiful, lovely child he is, that in the face of extreme adversity, he has found a way to smile through it all. And although I definitely have my sad days at seeing my poor son having to go through all of this over again, and dealing with the uncertainty of our immediate future, he is able to put a smile on my face too.

sad

a grain of salt and a pound of hope..........

The other day I told one of the nurses that as much as we were always trying to get out of the NICU, I told her I would be ecstatic to still be here next month, because that would mean my son will have fought his little heart out and won, it would mean that eventually I will get to take my son home no matter how many days or months we spend here, to me that just doesn't even matter anymore, I just want my baby to be OK.

Right now there is not too much to update except now they think Thurston does not have pneumonia, just really crappy lungs, in fact Dr. Breed said Thurston's X-rays look better than ever and he is more perplexed than as to what happened. His best guess is that he was probably hit with a very powerful Virus, as they have tested every bacterial infection known to man, they even have an infectious specialist working on him, and although some have grown on the cultures, they truly don't believe that any of those is what actually caused his illness. He is still on almost 100 percent oxygen on high oscillator settings. We just need to wait and see how Thurston will do. Its all up to him.

A couple of days ago Dr. Breed told us he really wanted to do a lumbar puncture(spinal tap), which they would have done earlier on but it is really hard to do with a kid who is on the oscillating vent and especially for one who is so unstable. He was pretty stumped especially with Thurston's seizure activity, and thought that maybe Thurston might have gotten meningitis. They did a head ultrasound and found no brain bleeds and cannot do an MRI because he is so unstable so he wanted to "fill in some of the puzzle pieces". We felt that the benefit outweighed the risk, as Dr. Breed said that although Thurston was already put on antibiotics to cover meningitis from the get go just in case, he might be able to tweak the antibiotic therapies if they could determine what kind of strain it was.

Now every step of the way, for some reason, I tried to always prepare myself for the worst. Since the moment they told me he was going to pass away in my womb(of course they told me 99.9 percent sure at that point that he was not going to make it), to when he coded the third day, to when they told me they fully expected to find brain damage on his 1st through 6 head scans, to a high possibility of being blind, to not making it through the night at 4 weeks old etc. etc. Every step, I just assumed the worst would happen so that I would be "prepared" if it did.

I FINALLY DECIDED TO STOP THAT!!!!

I looked at all of the evidence behind me.....this kid is a damn tough little BUSTER!!!!!! He truly has surpassed every ones predictions. I also thought to myself after the first few days of this new crisis, "if my son does die, will it be any worse or better if I "prepared" myself for it". Seriously think about it. I will be just as devastated if he dies whether or not I sulk around for the next couple of days or not, whether I worry myself sick, stay up all night vomiting, not eat or sleep, grind my teeth into oblivion, research a million stories on the Internet etc. Can you really prepare yourself for the death of your child or any of the other things that might possibly happen to them. Sure its good to know all of the possibilities, it is the doctors job to lay all of the proverbial cards out on the table but it is up to me how how take in that information and process it. So I tried a little experiment.............

Doctor Breed told us that meningitis could be the possible culprit to Thurston's illness and also explain his seizures. Now I could have gone home and been crushed. I could have gone home and sulked, cried, pouted, worried my head sick especially as to what a horrible blow that would be, the brain damage it could cause, I know first hand what meningitis can do to a child, it is pretty devastating. But instead I decided to do something Chad has been doing this whole time...........simply wait and see; and not only that I did the opposite of what I have always done, I actually said to myself, "he does NOT have meningitis until they tell me he does" yup I decided to actually hope for, dare I say it, the best possible scenario. Guess what. I was actually in a pretty good mood, I actually ate dinner, I played with Viola, I actually felt normal. I decided I will deal with meningitis if and when I am told he has it......

Drum roll please and forward to the next morning when we got the news..........no meningitis. Boy I thought about all the wasted negative energy I would have poured in to myself, the mother I would not have been for Viola or Thurston for that matter, the strength I would not have given my husband had I sat and worried all night about a prognosis I had no idea would or would not come to fruition. Dr. Breed is now even more stumped than ever but he said"well it definitely makes this much more puzzling but I would rather it be puzzling than for your son to have a brain infection".....yup me too.

I decided to deal with his 50/50 chance of survival the same way. In reality, when the docs have NO idea whether a kiddo is going to live or die, they place this random statistic on it. So when people have seen me this week they look at me at first with devastating eyes and then puzzled eyes at my new found strength. Instead of grief or anxiety, my eyes are filled with hope. I told Dr. Breed that I know my son is in critical condition, but he is still alive, he is still fighting. That me trying to "prepare" myself for something devastating is not going to make it any less so if it happens. It has taken me a long time to get to this place, a place of hope and courage and strength I never knew I had. This journey has allowed me to evolve in ways I never thought possible. I am not giving up on my son. He needs me to be strong for him. He is still here. I cant believe it took me this long to finally be in this very healthy place. Trust me if I am dealt any bad news, I will be devastated, you will not be able to peel me up from off of the floor, but unless I get a 100 percent diagnosis, not some random statistic thrown my way, I will take it with, as Pliny the Elder concocted oh so long ago, "a grain of salt"and Ill add a little dash from my own new found spice cupboard, "a pound of hope".

2 steps forward, 20,000,000,000,000 steps back....

Note to self....you cant really be at the last stage of grief, acceptance, when there is still a possibility that you have to start the process all over again....

I just never ever ever ever ever thought I would hear those words again, those words that I thought were behind us, those words that will cripple even the strongest of human beings, a doctor telling us yet again., "he might not make it". Yesterday they gave him a 50/50 chance, and just like that my sons fate is determined by the flip of a coin, heads or tails, its just anyones guess. I just cant believe we are back here again, but this time it is even worse. We have clocked in 5 and a half months with our baby. We have got to hold him, smell him, touch him, sing to him, read him books, rock him to sleep, breast/bottle feed him, look into his sweet little eyes, hear his beautiful little cry, adore his sweet little pout, and just love him silly. His little adorable personality has shone through; he likes it when one of the nurses plays him country music(much to my chagrin), he hates and spits out his formula but loves straight breast milk, he looks out of the corner of his eye when he is trying to sleep to make sure you are still there, he loves being held and screams when he is put down, he loves when you make goofy faces, he stares intently at you when you are talking to him about your day, he looks up through the blinds wondering what is beyond his little NICU world, he has everyone wrapped around his little finger and then some. As you can imagine we are truly devastated, and completely in shock as we just never thought we would be back in this horrible place, especially with as many strides as we have made, it is just plain unfair.

On Tuesday, I came in at night and Thurston just wasn't looking right. His eyes were glassy, he sounded congested, and his liters went up to 3. Everything kind of happened so fast, just a blur really. I actually went to go visit a friend who just had a baby in the same hospital and when I came back Thurston was put on the cpap. I had called Chad earlier and said I was going to spend the night just to watch him and see how he progresses. At that point we were concerned but not overly worried. We thought maybe he was working too hard at breathing and needed a little break. It was getting late, and the doctor told me to go lay down for a bit(they let me sleep in one of the rooming in suites) and she told me she would come get me if she needed to update me on his progress. She had said there was a possibility they might have to put him back on the oscillating vent but she would wake me up if that happened. At around 3 in the morning she came in the room and told me that he was indeed on the oscillator, and not only that, it looked as though he caught something, something that was pretty bad and that she felt he was very sick as he was on the highest oscillator settings at 100 percent oxygen, thats the most support a baby can be on. She put him on every antibiotic known to man for safe measure. She told me that it was probably best to call Chad and have him come up as she was not sure how Thurston was going to do which is code for...."he might die so you better have your husband come in so that he can say his goodbyes"...we have been there before but to hear it again at this stage was just too much for me to handle. The nurse tried calling him but he didn't answer. I told them I could drive home to get him and they said there was no way they were going to let me drive. They called the police to see if they could drive by the house and ring the doorbell. Still no Chad. I kept thinking,"oh my god, the oven got left on or the furnace is broke and they are dying of carbon monoxide poisoning". I began panicking and told them I had to go home. By now it was close to 5am. At that point Thurston was on 100 percent oxygen but not getting any worse and was critical but stable. I told them I just wanted to go home. they gave me a taxi voucher so I wouldn't have to drive. I waited and waited outside but the taxi never showed so I finally just said fuck it and took the car home, I just had to make sure Chad and Viola were OK. I got home around 6am and Chad and Viola were fine. Somehow, Chad left the phone downstairs, again, not realizing how grave our situation was and was able to sleep through the doorbell. I crashed with exhaustion. Everything just seemed so surreal, so like a bad nightmare, I just couldn't believe this was happening all over again.

Fastforward to today, Sunday. Right now Thurston is still fighting off a bacteria gram negative bug(one of the most virulent strains) and has pneumonia . He is still in critical condition. He began having seizures a few days ago and they are not sure what is causing them. Could be any number of things, he has had a slight fever but nothing over 101 so could be febrile or could be something else. He has been on every medication, sedative, antibiotic, and now seizure medication. It is too much to list here. Right now my very good friends Janut and Jim are in town helping us out with Viola. Somehow they just came at the right time or I probably would be going insane. I am sure there are a million details left out. I will try to keep everyone updated but for right now he is still in critical but stable condition and they have been able to wean his oxygen settings a little bit but things just change too quickly for me to keep up with. Thank you for your continued prayers and thoughts and I just hope my little man has some fight left in him, and I hope I do too.