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.

Dr. Strangepreemie: or how I learned to stop worrying and love the NICU...21 weeks actual(5 months, gulp), 8 weeks adjusted

My little man hit 7 pounds finally 7.8 pounds to be exact.....yea he is now at that newborn weight, the big 7!!!!!! He is also 18 inches long, so not quite as long but he will get there. He now can almost fit into newborn clothing without drowning in them. He is my little fat daddy. The next great news is his ROP is resolved. It is zone 3 stage 0 which is fantastic. Last I heard his next appointment will be when he turns 9 months old YEEEEEEHAAAAAAW. This doesn't mean he may not need glasses, but it definitely means that most likely, he wont have any major vision issues.....whew we just dodged another bullet in the life and times of the IUGR preemie world. I remember sitting down with the doctors in the beginning when they were explaining that Thurston was at such a higher risk than most preemies because of his IUGR and I sat crying, begging her, that I would pay for someone to come and and check his eyes on a daily basis as I was so fearful that on top of everything else that he might be blind....Oh I am so glad those days are over.

Ok now the lung part. At first it seemed as if Thurston was rebounding from the steroids, and they had to up his liters a bit on his oxygen. Then the next day, Dr Maverick(that's just what I call him) decided to try something different. He put him at 1 and a half liters at 100 percent oxygen to see how Thurston does. If he does well he might be able to come home on some heavy duty oxygen equipment, a part time home health care nurse, an ng tube and a but load of medications, inhalers etc. Hmmmmmmmmm not sure how I feel about all of this, a part of me is scared shitless...what if he gets really sick, stops breathing, what if the machinery malfunctions, how am I going to be able to handle two kiddos all day, one whose medical needs probably equal that of 10 newborns and what will this mean to Viola, and we won't be able to go anywhere, sequestered in our house with daddy gone until very late at night(oh yea it's crunch time at work) gulp and more gulp. Of course the other part of me is thrilled at the prospect that he could actually be home in about a month or so, but as a lot of people say, never trust a preemie, so if he doesn't tolerate this new change, well let's just say the nicu could possibly be our permanent residence for quite sometime.....

Early on, it wasn't as hard to leave Thurston at the hospital. He was in this tiny incubator, clinging on to life, or on a few occasions, clinging on to death. It made it a little easier knowing there was nothing I could do for him outside of pumping milk. We were not allowed to hold him, and we were extremely limited to touching him, talking to him, singing to him, and anything else that would overstimulate him. Plus you are in such a state of shock, that you really are not capable of making any decisions anyway, literally, it was just easier to leave it up to the doctors.

I really also was emotionally detached from my sweet little man. After someone tells you that he is not going to make it outside of your womb, that he is going to die and you will never get to see your child alive, your mind has a way of detaching itself, to deal with the pain. I remember doing this on three occasions during his nicu life as well. The first time I laid eyes on him(you just cant believe that this little tiny baby could ever survive), on the third day when the nurse practitioner came into my room and told me that he had coded and they had to bag him to keep him alive, and on the 4th week of his life, when the doctor sat us down to tell us that he was on the highest amount of life support humanly possible and that he may not make it through the night.
After about 2 and a half months I finally began to hope and believe that my little man was here to stay. I was talking to my best friend the other day and she said she knew that I had crossed over that bridge when I started my blog and posted it on facebook. She knew that he was out of the woods.
Having said this, I think I have conversely been in denial as well for a very long time about how sick my little man was/is. At 24 weeks he was only 11 ounces, or 369 grams. He was the size of a 20/21 weeker....the statistics of a 24 weekers survivability was grim enough, but Thurston, had he been born at that point, well, as the doctor said, they just don't make tubes small enough....The doctors, although they don't mean to, also remind me of just how sick Thurston was, and statistically, just what they expected out of him. When the doctor was telling me that Thurston's ROP was resolving and at the least scariest stage you can get(zone 3, stage 0) he looked at me and said, "quite frankly I am surprised". Seriously, when I am telling you that the doctors expected this kid to not only not make it, but to have every serious problem that a preemie could have(blindness, NEC, Brain bleeds, Cerebral Palsy and PVL(still wont know for some time), hearing loss(we have no idea about this one yet as his o2 is still too high to test him), I am not exaggerating. The doctors at every stage have seriously and incredulously been completely shocked at his progress, that's how sick this kid was, and the fact that he is doing as well as he is so far(barring the lung issues) is truly miraculous.

Most preemies go home around their due dates, give or take a couple of weeks for example if your baby was born at 31 weeks it is reasonable to expect your baby will be in the nicu for approximately 9 weeks etc. When Thurston's due date rolled around I thought to myself,"well in reality, he was really kind of like a 23/24 week old baby, so if I add 3 or 4 weeks on to that expectation that is reasonable", so I figured ok, maybe he will be home by the end of June, or early July. Then when he wasn't even off of the cpap by then, and had not even bottle fed yet, I thought, "well, he was really really sick, he was not a "normal" preemie, he was stressed in my womb, he wasn't getting the nutrients and oxygen he needed, his body shut down to spare his brain and heart, he had very little amniotic fluid, I guess it is reasonable to think that he will just need a little more time to recover".

Before the doctor began trying him on this new "experimental" oxygen regiment, Chad and I were talking the other night about some other solutions if he needs to be in the nicu maybe 4 to 6 more months, maybe even longer. He said "maybe we could sell our house, and move into a rental closer to the nicu", maybe sell one of our cars, have him buy a scooter, and that way we would save a ton on gas, driving back and forth, and we would be able to go to the nicu anytime, day or night, if we could find a solution to our other issue of trying to find care for Viola. We were already on a fixed income before this happened and for us to put Viola in daycare all week would mean we would have to cough up some major dough....now if I was working that would be all fine and dandy but that would defeat the purpose of me trying to see Thurston more..... we were in essence, grasping at straws. We have had a few strands of good luck lately as Chads wonderful Brother Brad and his boyfriend Juan are in town and have helped out tremendously. My dear friend, Johanna took Viola for the entire week before that, and my wonderful friend Ja"nut" is coming out to help us next week. You will not meet more grateful people to have all of these wonderful loving people in our lives. I am actually going to write a post soon thanking all of the people that have helped us along the way but was going to save it for after Thurston comes home. That way we make sure we don't leave anyone out!!!

They say there are 5 stages of Grief

Denial
Anger
Bargaining
Depression
Acceptance

As I look back, especially when I read my blog, it is funny how I see each stage, some I went back and forth in between etc. but I think I am finally at the part where, you just realize, this is my life. There is no going backwards, only forwards and you face each day as it comes. I have accepted the fact that he has a chronic disease. I have accepted the fact that he will have a lot of medical issues to face when he comes home. I have accepted the reality that our son was born prematurely, and I am ok with all of that. I finally have accepted the fact that he might need to be in the NICU for longer and that we just need to find a way to keep up this crazy lifestyle until he comes home.
So I guess I reached that latter part of grief and not only that but I feel unbelievably lucky...And as much as it pains me that my child is still away from us, I need to be eternally grateful to the doctors and nurses who have saved my child. After all it is not their fault Thurston was born early so I guess you could say that I really have learned to stop worrying and love the NICU.

It could always be worse.....

It Could Always Be Worse: A Yiddish Folk Tale.........
A poor farmer is distressed by the fact that his house is too crowded and seeks the help of his Rabbi. The clever Rabbi tells him to bring a chicken into his home. The farmer questions the rabbi's advice but begrudgingly does as he is asked. Each time he goes to the rabbi, he tells him to bring in more and more livestock from his farm. Towards the end of the tale, the farmer tells the Rabbi he cannot take it anymore and he is going crazy. The Rabbi finally tells the farmer to release all of the animals from his home. The farmer does this and cannot believe how much better, less crowded, and peaceful his house is and thanks the Rabbi..........It could always be worse........

When I was in my early twenties, I had a really shitty car.... I nicknamed it shitty shitty bang bang. It would break down at least once a month. I was trying to go to school full time, worked three jobs, had no health insurance, and still had trouble paying my rent etc. My car broke down, again, and I had to take the bus to one of my jobs, again, which took about an hour and 45 minutes with about 3 different bus exchanges and while I was sitting at one of the stops I started thinking about how miserable I was and how horrible my situation was, and how everyone else my age had a running car, had parents who were able to help them pay for college etc. I looked up from my little pity party and I noticed a man who appeared to be homeless. I had to do a double take as I realized that this poor man, had no nose. Yes you heard me, no nose. He had clear tape over two holes where his nose was. I couldn't believe this poor mans plight. I thought that he must have burned his nose so bad from years of sleeping outdoors that maybe it burned off. The bus came and I had to get on. My heart sank. Here I was feeling soooooooo sorry for myself and my situation but hell, I still had my nose. I felt about a centimeter tall if that. I think I cried the rest of the way to work. All I kept telling everyone was that I had a nose. Everyone thought I was nuts but all I knew, was from that moment on, that you never have it as bad as you think, and that truly, it could always be worse.


The NICU has been a strange experience. There have been moments where it is very hard to maintain that "it could always be worse" attitude. It makes it even harder when your kid is one of the only ones who is still needing oxygen 6 weeks after his due date(most kiddos either go home by then or they only have some minor eating issues). My kiddo will be going home on oxygen there is no question about that. He may need it for a very long time. We will have to sequester ourselves for a year, maybe even 2. He will need a ton of therapy, no question about that either. And we still have no idea when he will come home and we don't have a ton of help nearby so to try and keep up this NICU lifestyle will be pretty grueling..... But, it could always be worse. I met a couple of preemie moms online whose babies are still on the vent because their babies lungs are actually worse than Thurston's. One mom has been unable to hold her daughter for almost 3 months now...it could always be worse. Another preemie moms baby just passed away in her arms.... it could always be worse. A week after Thurston was born, I read about a mother who had a full term baby but caught a staff infection and who almost died, but they had to amputate her arms, and her reaction to it all" I am just so happy to be alive to be able to watch my children grow up".....it could always be worse.

The other day, I was talking to a very lovely nurse about a friend of mine who had a late term preemie, who never had to go to the nicu, but has had some lingering issues here and there with her child and how badly I felt for her. The nurse looked at me funny and said,"wow, how can you feel so bad for someone who has not gone through anywhere near the experience that you have gone through". I told her that I think an experience like this can either make you one of two ways, either more empathetic toward the plight of others, or you can think, "well my experience has been "worse" than anyone else's so their pain and sorrow doesn't matter as much as mine". I think this has made me much more empathetic. I told her it doesn't really matter if your child has been in the nicu for 1 day or 100, It is still painful any way you slice it. I just don't want to be that kind of person that thinks someone else's fears, anxieties, and sorrows are any less significant than mine, that life is some kind of "pain" and "hardship" competition to see who has suffered more, or turn into that parent who tells her kids "I had to trudge through 20 miles of snow uphill to get to school" etc........ To me that would not make me a good person, just a bitter one.

So I am ready to put down my proverbial violin, relish the fact that I am able to wrap my arms around my daughter, son and husband, touch my nose, look up at the roof over my head and think to myself, "it could always be worse".

"Breast"fast of Champions.........

Today was a HUGE day for little man and for our family.......

First, it was the first time in 127 days that my sweet baby was able to drink milk from my breast. Because of his high oxygen needs, he was unable to drink orally and all last week he got a chance to take to the bottle. He did fairly well drinking about half a feeding worth of formula/breastmilk. Well today was the first day they allowed me to try and let him feed from my breast. I had to use a nipple shield so that he could grab a hold of it as his suck may not be that strong, and boy oh boy did this kid take to my breast like a champ. He was high satting the entire time, sucking, swallowing and breathing awesome, and completely relaxed as a noodle. He nodded off a bit on the left breast, and switched him over and he sucked right away on the next without skipping a beat. WOW.....cant believe we had to wait so long for this moment. Hope he keeps this up cause let me tell you, I would LOVE to eventually feed him full time this way. Only time will tell but we are off to a great start.............


Next on the agenda was later that evening. Because Viola is on a delayed vaccination schedule, they will not let her back into the NICU so my sweet daughter and sweet son have never even met each other. 127 days without ever even laying eyes on each other.....well that all changed tonight. She knows who he is, she sees tons of pictures, she asks about him all the time, and just this morning she actually said "Mommy, I want Brudder Turstin come home".....awwww my sweet angel. So the director of the NICU arranged for Viola to be able to see Thurston through the glass of the door when you enter the NICU. It is a HUGE production, especially since he is still on oxygen, they had to jump through some hoops but boy was it worth it. We took video and pics, and Thurston was pretty upset the whole time poor guy. He just doesnt like change too much(must get that from daddy :)) but yea, it was a good day, the light at the end of the tunnel is getting a little bit closer each and every day....

SURVIVOR NICU: OUTWIT, OUTPLAY, OUTLAST..18 weeks actual, 6 weeks adjusted....

So I have been so enjoying my son lately. He is now a month and a half old, and because my mom has been here, I have been able to go up to the NICU and spend oodles of time with him. Because of this I have also been able to notice NORMAL things. That is one thing about having a premature baby, you sometimes get so caught up in the ABNORMAL things about your babies prematurity that you forget that he is first and foremost, a baby. When I taught my students who had different abilities, we learned something called "people first" language. In other words, you define the person before the "disability". For instance, you don't call someone who has Down syndrome a Downs baby, you say, a baby with Down syndrome. But most people including myself refer to a baby who was born prematurely as a "Preemie" and with that comes a ton of connotations, images, and assumptions of just what that means.

This week I was able to notice so many wonderful "non-preemie" things in Thurston. I have brought in a ton of toys for him and I jingle them on one side of him and he turns his head toward the sound, looks at the object and then tracks it as I move it alllllllllll the way over to the other side. So not only is he hearing, but he is able to visually track with his eyes, and he is also able to move his head from one side to the other. I was so tickled that I laughed out loud and said "oh look at you, you are tracking, what a great milestone you have hit". I then looked up to see a nurse looking at me. She didn't have to say a word, it was all in her face. I looked at her and said , "oh but I know that he will still have issues". I cant even believe it. I cant believe that I wasn't even able to enjoy that little moment, that very normal moment with my son and retain that little ounce of hope in my heart that he could very well be......dare I say it......NORMAL.

You see since day one, everyone has been convinced that my son will have cerebral palsy, I will say it out loud since some people will only say it with their looks and obscure monikers they have come up with. They have called it by many other names like "challenges" or "issues" or "he will need some help" or I love it when people say to me "It is great that you have special education experience" (thats my favorite one)etc. Even though his brain scans so far have been clear, they still fully believe deep down in their hearts that my son will be "challenged". Its almost like a self-fulfilling prophecy and I fear that if he stays in the NICU much longer, they will "will" him right into submission and downright cause him to have something "wrong" with him.

They have had me convinced as well. They convinced me that he wasn't going to make it outside of my womb, they convinced me that he would die within the first day of life, they convinced me he would die after he coded on the third, they convinced me he was going to die after he was 4 weeks old and had very little good lung tissue left, they convinced me that they were positive they would find some type of brain damage after his first, second, third etc. brain scans, they convinced me that he had a high probability of being blind and deaf, could be wheelchair bound, cognitively delayed......you name it they have given me every worst case scenario they could vomit at you, and gave it to me with so much conviction that I am surprised their eyes haven't popped out of their heads by now!!!

Guess what my son has done to all of their crystal ball predictions......He has outwitted, outlasted, and outplayed all of them. I am tired of trying to appease them, it should quite frankly be the other way around, my son and I are the customers after all. I am entitled to enjoy the fact that my son looks and acts NORMAL, that he clasps his hands together, that he can prop himself up with his forearms, lift his head up and look in the mirror at his handsome self, that he eye gazes right at ya, that he tracks and moves his head from side to side, that he seems for all intensive purposes, like a normal newborn, not like a non-people first language "Preemie". I am tired of tempering all of this excitement with an "oh but don't worry everybody, I know he will have some, "issues" "challenges" "problems" "delays" etc. Why cant I believe that in the end, everything will be OK. Isn't that the definition of hope. My son IS the ultimate survivor and he deserves the million dollar prize.....a mother who never gives up on him nor on his chance at having a "normal" life.

Happy Days are Here again.....17 weeks actual, 1 month 1 week adjusted

Happy days are here again
The skies above are clear again
So let's sing a song of cheer again
Happy days are here again

Altogether shout it now
There's no one
Who can doubt it now
So let's tell the world about it now
Happy days are here again


So today was a very good day, a very good day indeed. First of all, my mama is here. With her here, I really wonder how we have been holding up all this time without any family around. Family lifts you up. Not just physically, by helping around the house, cooking, cleaning, helping with Viola etc. but there is something about your family that just the sight of them helps you on this deep down emotional level, that just by looking at them, you know everything is going to be ok. Anyone that has been through a time of crisis and has family around them on a consistent basis, are truly blessed and extremely lucky people. Even though my mom is only here for a very short time, I truly feel like I have won the lottery. Its just what we needed and hope that it will help to carry us forward after she leaves. You just never stop needing your mommy!!!!!!

Today also was the first time in 3 months that Chad and I were able to be with Thurston together. It was beautiful to be able to enjoy our son together, especially now that he is so much older and healthier and interactive. So that was extremely special for us.

Yesterday was also very special as Ama was able to meet her grandbaby for the first time. When we walked in she had mentioned she saw something going up his nose and I thought she was referring to the nasal cannula. I actually had to do a double take as they had put his ng tube up his nose instead of down his throat. It totally threw me off because that could only mean one thing.......he was going to be completely weaned off of the cpap. Well not only did the doctor tell us that but they wanted to try giving him a bottle. WHAT....I had not expected this as they usually only try bottle feeding when they are down to 2 liters and Thurston is on 5 liters. The doctor explained "Thurston is not your normal preemie, we need to bend the rules with him".....AWESOME!!!!!!!! I say!!!!!

So today, the nurse gave him his first bottle and he passed with flying colors, just gulped it down like a champ. 15 ml which is about half and ounce. We took a video so if I ever figure out how to load stuff up I will post it later this week. Chad and I both cried. This is the light at the end of the tunnel that we had been waiting for, a very long tunnel, but a light nonetheless. It has been so hard for me to talk to other NICU moms as it seems all of their kiddos, no matter what their gestation they were born, and weeks later after Thurston, they are all on low oxygen and starting to bottle feed, that is the one of the first indications to a nicu mom that her child could be coming home soon(and soon to us could mean another couple of months but HELL, to us thats amazing considering what we thought could be another 5 months). This has all happened so fast that my head is spinning, I just never thought that we would see this day. Now Thurston's oxygen is still pretty high, he is still needing 50s/60s, but like the doc said, Thurston gets to bend the rules a bit. It does seem the steroids are helping a bit, not as fast and much as of course we would like, but I have even noticed that his breathing doesn't seem as laboured as it has been, so I just so hope we can continue on this upward spiral, however slow it travels.

When I asked the doctor today how much oxygen Thurston would have to be on to get him home, he walked over and turned his pressure from 5 to 4. He said lets just see how he tolerates that and we will go from there. He could go back to 5 but I am just ecstatic at all of my son's progress these last few days.

Its nice to have my mommy here, its nice to get some good news from the docs, its nice to see my sons progress a little, its nice to finally feel that happy days are here again.

Breathing lessons.....17 weeks actual...4 weeks adjusted

So before I update everyone, I thought I would explain some terminology for everyone to understand, especially dealing with Thurstons lungs as this has been one of his biggest obstacles to date. And if you are a medical expert, feel free to correct anything I am saying, as this explanation is filtered through my rather scattered and disorganized brain :)

We breathe in 21 percent oxygen and if we are breathing that 21 percent in correctly, our blood saturation should read at around 100 percent. Our saturation changes when we run, if we are ill etc. Anything that basically impedes our ability to breathe in enough oxygen.

So Thurston's saturation levels are set between 87-94 percent(instead of 100 percent). They keep the saturation levels lower on him for many reasons(so his rop does not progress, to try to wean his oxygen levels down etc.) Because Thurston has BPD(I will explain this in another post) due to both his prematurity and from being on the vent, his lungs are damaged and that damage has caused inflammation and cannot hold as much oxygen as normal lung tissue can. So his oxygen percent runs much higher than 21 percent in order to give him enough to keep his saturation levels up. Right now he is needing anywhere from 40 percent to as high as 80 percent oxygen. The goal here is to get him down to needing only 21 percent, then he can lose all of the oxygen and just breathe in normal air like you and me.

The other complication here are the different equipment that administer the oxygen. At first, Thurston actually needed a vent, which pretty much breathes for you as his lungs were so immature, he was unable to breathe on his own. We were able to wean him off of the vent and onto a cpap which kind of helps him breathe by inflating his lungs.... for example giving him 15 "breaths" a minute etc. Now he is on High Flow nasal cannula which gives him oxygen at a high pressure which helps to push the oxygen into his lungs. Thurston is breathing on his own but is getting alot of extra help. Next is to try and get him down to a Low Flow to where he is really getting just some extra oxygen, kind of like someone who has emphysema that you see walking around with an oxygen tank. Once he gets on 2 liters of low flow he can actually start eating orally with a bottle/breast and this will be the next step in getting this poor kid home.

Right now he is on 5 liters, or high flow and he has not been doing great on it and still needs 50-80 percent oxygen(again 21 percent being the goal to move to 4 liters, then 3 liters, etc.) to keep his saturation levels between 87-94.

He is now 4 weeks old adjusted, a one month old baby, who is missing out on a TON of development by still being in the nicu. The longer he stays there, the more at risk he is at of falling further and further behind. The longer his oxygen stays high, the more likely he will need a g-tube to feed him(after a while babies lose the ability to suck and swallow and will need a ton of help later on if they don't get practice)a ton of physical and occupational therapy, not to mention intellectual delays from not being stimulated like a normal baby should. They do everything they can at the hospital and Chad and I go as often as we can, but with no family here to help us out, it is just not enough. I am also a firm believer that neurons are formed even just by holding/breastfeeding, smelling from a baby/mother closeness perspective so he is missing out on the 24/7 that I would have given him if he had been born full term or even if he were like most "normal" preemies who usually go home around their due date.

so having said all of this, the doctors thought they would try giving him another round of steroids. He had one round of steroids at 4 weeks old(I will regale you with that story when my mommy comes and I can backtrack for you)that got him off of the vent and on to cpap. So it was successful. The steroids basically are an anti-inflammatory drug and by decreasing the inflammation in the lungs, it helps the lungs to hold on to more oxygen, thereby decreasing his oxygen needs. It is not without its risks, as pretty much EVERYTHING during this entire process has always seemed to be the lesser of two evils scenario, but we all felt that the benefits(getting his oxygen levels down which will eventually get him closer to going home)outweigh those risks. We are not sure if this round will do the trick so we have to wait and see and if in a couple of days it does not seem to be helping they will take him off of it and then we go to plan B or C or D etc. So please pray that it works!!!!!!!

Thurston is now over 6 pounds a little chunk!!!! One of the nurses calls him her "fat daddy". We LOVE that nickname. He is really acting more and more like a newborn. He looks at you and his environment. He is not really smiling yet(just those passing gas smiles) and again, he might develop later than most kids but when he does crack that first real smile, you all will be the first to know and we will have a huge gigantic enormous picture for all of you to see. I will also be posting more photos and backlogging here as my mommy will be arriving in Austin tomorrow. We cant wait to see grandma or AMA as she likes to be called and it will be the first time for her to meet her grand baby so I know she is very excited as much as we are. Hell, I feel that once she gets here, that I can finally breathe a little better myself !!!!!!