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Friday, August 27, 2010

about the pics

so my nurse Ami is crazy about me and has stored all of these pics of me for my mom and 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.


One of my first smiles!!!!

My mom is crazy..

Ho Hum!!!!


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....


Ok let me see how many days Ive been in the

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....


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:


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.

Sunday, August 22, 2010

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.

Wednesday, August 18, 2010

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.

Tuesday, August 17, 2010

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!!!!!

Sunday, August 15, 2010

"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)
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.

Friday, August 13, 2010

Wednesday, August 11, 2010

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 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 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".

Friday, August 6, 2010

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

Note to 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.