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 !!!!!!

Shes got a ticket to Ride...Shes got a ticket to ride and she really cares!!!!!

I am not sure how anyone deals with a crisis situation without any family around to help them.......oh wait, we are in that situation and I guess we are not dealing with it very well(at least I am not).

True to form, my mother is coming to the rescue. She will be here next Friday, not a moment too soon, as I was one Calaveras County frog jump away from the funny farm. Thank all of you who emailed me to see what I needed. I will get back to all of you and I got some great and interesting offers....hmmmmmmmm. Will write more when my Mom comes and maybe even catch everybody up on when Thurston was born. By the way, now that I know my mommy is coming, the cup now not only looks half full, but is overflowing at the top..............thats really all I needed....my mommy :)(and thanx grandma/mimi for helping....i love and miss you so much.

Its my blogy and I'll write what I want to....write what I want to....write what I want to, you'd write it too if it happened to you....

I find that every post I write is sad, whiney, complainy etc. Let me tell you why, I'll be brief.....because on the days that I am actually happy , or at least , not sad, I don't feel like writing. So its not that I don't have good days, its just that I'd rather just enjoy that moment. Misery likes company and I don't know the saying for Happiness....Happiness.... I guess......wants to be left alone:)!!!!!

All along the watchtower..........

There must be someway out of here
Said the Joker to the thief
There is just too much confusion
I cant get no relief



One of the hardest parts about being in the NICU, and something that is hard to avoid when you have been there for as long as we have(108 days and still counting), is watching other babies come in, get healthy, and then leave. I know I know, you are not supposed to compare, you are not supposed to pay attention to all of the other babies, out there in the open, hanging out with their nasal cannulas or sometimes nothing, sucking on their bottles, satting in the 99's/100's, on 21 percent oxygen, with their joyful parents taking pictures, bringing in the grandparents to ooooooh and ahhhhhhhhhh...yea they make it soooooooooo easy for us not to compare our kids let me tell you. Yea they decided to put pretty much the sickest baby this NICU has ever seen(not my words mind you but pretty much any nurse or doctor I have encountered likes to regale me with that phrase)smack dab in the entrance where we get to see EVERY SINGLE PERSON AND BABY walk by and where we have a perfect view of the entire NICU, almost as if we were a guard of the watchtower(they do call him the mayor, a term they use for the baby who is currently the longest NICU resident).

Thurston has now been on cpap for 11 weeks and has been doing nasal cannula sprints for about 2 weeks now. He is satting anywhere from the 40's to the high 60's(again 21 percent being the ideal)There is always another kiddos stats up in Thurstons room so the nurse can keep her eye on the other baby(or 2) she is watching....always the same.....high satting in the 99's/100's(Thurston usually hangs in the upper 80s or desats). He is 15 and a half weeks old(almost 4 months old). He is now 2 and a half weeks past his due date(3 weeks if you count my obgyn's estimate). AND STILL no light at the end of the tunnel. Still has not taken a bottle, still with the g-tube, still laying in his little bed. I had asked the doc yesterday to estimate when he could come home and she refused. They dont like to do that in case they are off.....I mean its not like Thurston is a car that needs repaired or something..NOPE its just not that easy to estimate.

In the meantime, Chad and I are hanging by a thread literally. We dont see each other at all, we are the proverbial two ships that pass in the night. As soon as he comes home I leave and stay at the NICU for 4 or 5 hours, come home around 1230-1am pump and go to bed by 230am. I have started to go up now in the day as well as I found a sitter for Viola so I am able to go for about 4 hours in the day. Chad goes at 4pm every day(thank god his work understands our situation). On the weekends we take turns going in the day and at night. In between, I pump and Chad watches Viola. People keep saying, you need to take care of yourself...With what we have no time or money to really do that....we have no family here, and even though our insurance is covering almost everything, we have incurred unexpected expenses(almost 700 dollars in breast pump rentals and storage bags, who knows how much for the extra gas going back and forth to the NICU, money for child care etc.). I really dont know how much longer we can keep up this pace. It seems there is no end in sight.......

I thought of so many solutions to our situation....life flight Thurston to a NICU in Ohio near our family, bring Thurston home with a 24 hour nurse(doesn't seem likely), sleep at the hospital at night on the couch in the waiting room so I could spend more time with him........I am at a loss, unusual for me, a person who has always found solutions to any problem I have had in life.....

I broke down again today. I wonder if they could estimate how much and how long it will take to repair me........................

One Hundred Days of Solitude..........

Gabriel Garcia Marquez once wrote:

“...human beings are not born once and for all on the day their mothers give birth to them, but...life obliges them over and over again to give birth to themselves.”

It has now been 100 days in the NICU.......and Thurston has definitely re-birthed himself a 100 times over, everyday, emerging from his journey there, stronger, and more durable. It truly has been a surreal period of time for all of us.
If it were not for my daughter Viola, and of course my hubby Chad, I think I would have gone crazy by now. The NICU is a very strange place for any parent, but for me it is the antithesis of every parenting belief inherent deep within my soul.

When Viola was born, she was very coll icky. We were extremely frustrated parents and it killed me to know that my baby was in pain. She would not go in the stroller, car seat, baby swing, you name it. She would not let us put her down for two seconds. We had a few sleepless nights until I decided to just sleep with her in my arms, with pillows supporting us......that night, we all slept like babies,and after about 3 months, when her colic disappeared we were able to lay her next to us in bed where she has remained ever since. I pretty much breastfed her on demand as well and let her decide when she was ready to wean. I realized after meeting like-minded peeps that I am an AP parent, or attachment parent. I allow the child to lead and tell me what she needs. Most attachment parenting involves one or more of the following.....natural birthing, co-sleeping, breastfeeding European styling, NON-crying it outing, baby-wearing, organic-buying, cloth-diapering, tree-hugging, nature-loving, recycling, back to the basics mentality. Let me tell you, the NICU is the EXACT opposite of how I want to parent, and there is no one to blame for this, it is what it is and they have taken excellent care of my baby(saved his life as a matter of fact) but nonetheless, it does make me cringe when I think of how divergent it is with my own parental philosophy.
For instance
-Natural birthing....well that one flew right out the window didn't it!!!!
-My son has slept in an incubator, and now a crib, by himself, away from Mommy and Daddy and Sissy...........we finally got him a glo-worm so he could co-sleep with something!
-He does "cry it out", not anyones fault, but there isn't always someone there to pick him up and nurture him when he cries...wish I could be there 24/7
-He is getting 70 percent formula and other additives that are probably not organic, and only 30 percent of my breast milk, through an NG tube, again, not anyones fault, he really does need to grow, but again, UGH!
-Um the breast pumping is pretty much de-tached parenting at its best!!!!!
-He soon will be bottle-fed, again, a must before he can go home, which kills me because they wont let me try and nurse him exclusively, but they need to know exactly how much he is getting, and if he can master suck, swallow breathe.....
-He of course wears disposable diapers, which I have used on and off with Viola, but am happy to say I am back to using cloth......its been a long 5 months...

So my sweet boy has endured a 100 days of solitude, detached from his parents in so many ways......yes he has docs, nurses, RT's, Ot's, and just about everyone in between, but he is still alone in his little bed, waiting for us to scoop him up and take him and his glo-worm home.

How it all started

Well I was not sure if I was going to write about this journey. It seems like such a long journey to tell and it takes a while to regale one with all of the details so I thought I should put it all down on virtual paper and have a common spot for all. I am in the process of back tracking so if you want to read how it all started come back often as I am trying to get everyone caught up from the beginning. I am pretty much done with February which was when I found out something was wrong with the pregnancy....it is probably the saddest of what I will post, outside of when Thurston's birth and first few weeks of life, which I will try and get up shortly.

On the sunny side of the street......

I am now the proud parent of a 5 pound butterball......Well ok so he is only 4 pounds 15.9 ounces, but if you threw a feather on the scale it would have read 5 pounds. YIPEEEEE. I realized looking back at writing this blog, that it seems kinda somber. When I started writing it only a couple of weeks ago, my intention was only to update people on Thurstons medical progress really, but somehow, within one day, it turned into a very cathardic outlet for what we had been through. I didnt realize how rough it really was, mostly for Thurston poor little guy....I still need to write about his birth and first few months in the nICU....more somber moments to regale you with....so I thought I would change the mood and give you all some extremely positive news.....

My little man is 5 pounds. He is now a sumo-wrestler of the preemie world or even the size of a small newborn, a very small tinee tiny newborn, but a newborn nonetheless. He is still on the cpap as his lungs are just still needing that extra help, but the doc says its just a matter of time(hopefully a week) that they will try him back on the nasal cannula.....which means hopefully within the next couple of weeks we move on to trying to orally feed him where he gets to practice his suck, swallow and breathe technique, something he needs to master before they send him a packin!!!!!

His ROP (retinopathy of prematurity) is now RESOLVING....more yippppeeeee. It had been zone 2 stage 2 which is a little scary and they had to keep coming back to check his eyes, and if it continued to progress they would have had to do laser surgery on him. Now the eye doc says it is in zone 2/3 which is great(zone one is the center of the eye and the most dangerous zone for rop) and is 0-2 stage which means its regressing. So hopefully it will continue on this path. Whew, one less thing to worry about.

Also, the doctor had been concerned with his muscle tone last week. He has been pretty stiff in his legs and arching his back, both of which could point to some neurological issues(cp being one of them) although this could also be just a preemie issue, or what I have always thought, an issue related to how stressed out he is on the cpap, with reflux and gas bubbles from all the air pumped into his tummy. Well last night, the doctor came in when I was holding him and wanted to assess him. As she was bending his legs, checking his body she said, "Hey, I am really liking what I see here". She had told me that his muscles seem far more relaxed and his flexion is much better. She said she had never seen him relaxed before because she always does his assesment when the nurses are messing with him(in other words when he is stressed out and tense). She had a huge smile on her face and was very pleased. I of course am ecstatic. It is more common for preemies, especially IUGR preemies, to have developmental issues, sometimes mild, sometimes more severe, and Thurston from day one has pretty much been in the highest risk category as he is both IUGR and a preemie. So far, he seems to be developing great(for being born 1 pound 4 ounces)so the future just keeps looking brighter and brighter. I guess we can start looking on the sunnyside of the street!!!!

D-day: storming the beaches of normalcy!!!! 13 weeks actual 40 weeks gestation 1 day old adjusted

Yes today was the day, the day that my sweet boy should have been born. Due date day I will aptly nickname D-day. And boy has he been at the frontline of a battle, the battle for his life. His prematurity a nazish nightmare, an invasion of a full term pregnancy. So we continue to storm the beaches of normalcy. To try and find some kind of peace with our reality. It is today that the NICU will start counting his "adjusted age". So he is 3 months old actual, 1 day old adjusted. I cant believe he left my womb so early. I am feeling the mental duress of all of this. Today I did break down as one would expect. I should have been in a hospital room full of flowers and well-wishes with my sweet boy and husband and daughter snuggled up and warm, instead I am sitting here attatched to a pump, my sweet 2 year old daughter by my side watching Max and Ruby, my beautiful son, being seen by a pulmonologist to tell us how bad his bpd is and what the long term prognosis will be. I just never thought I would be in this situtation. It is one of those things that you only thought happened to other people. But I would never want anyone else to go through this. It is simply to painful for words.

Basic Instincts........

So my sweet little man is now 4 pounds 10 ounces way over the 2000 gram mark!!!!!! He is gaining like a champ. His lungs are still bad and they had to put him on cpap again and are not switching out the nasal cannula until he can start satting in the 20s/30s. Right now he is satting in the 40s/50s. I got to help give him a bath last night and oh boy did he not like it. He screamed and screamed(music to my ears......you never realize what you take for granted until you dont have it....for the first 2 months of Thurstons life I never got to hear him due to him being on the vent and ng tube etc......now crying is the most beautiful sound I will ever hear). Anyway, I started paniking because the nurse had to take his cpap mask off in order to bathe him and I was worried that he was not getting the oxygen he needed. She noticed my concern and told me that unfortunately parents are trained to look to the monitor to see how their babies are doing, rather than trained to look at the baby. She said you know he is doing well by the color of his skin, his lips, the fact he was pissed off and squirming, and crying. If he wasnt doing these things, thats when you start worrying. I kept thinking about this notion, that parents in the NICU turn off their natural instincts and start relying on what the doctors, nurses, and equipment are saying. She is so right that I need to just start listening to my sweet boy.
Because Thurston has IUGR(or growth restriction) they have constantly cautioned us at how this will effect his development. I like to nickname some of the doctors Oh there is Dr. Gloomy and Dr. Doomy just for some levity. I even had a run in with a nurse practitioner(this particular one I call Dr. Strangelove) that mentioned CP(cerebral Palsy..which you cant really diagnose until a child is around 18 months or so unless it is extremely severe)even though I only asked about Thurstons chronic lung disease. Chad called the doctor the next day and he told us that cp would havce nothing to do with his lungs and he wasnt sure why the nurse practitioner would even have mentioned it. I am really done with what seems to me hyperbole and all of this crystal ball bull shit. Chad has always told me, even in the bitter first few weeks,"he looks good Donna, he looks like a normal baby, just small". I am now inclined to believe my husband, who has never once lost faith in Thurston. He does look and act normal. He looks around, tracks, looks straight at you when you are talking to him, turns his head to noises, he is now clasping his hands together, he flexes his legs and arms and really, just seems like a normal baby. I wont delude myself to think that he may not have issues as he grows, but I am tired of also deluding myself into thinking that he doesnt have a shot at a somewhat normal life either. I am finally going to grab the proverbial bull by the horns and start utilizing something that every new mother has within her, those eternal motherly basic instincts.......

pain pain go away....

No one knows the pain........My father once told me how his father(my grandfather died). My father was only 20 years old when his dad passed away and as he was sitting in the hospital room, looking out the window, he described what he felt. He watched as the world sailed by, people living their lives, as if they had not a care in the world. He couldnt understand why the world didnt stand still when his father died, why everyone was going on with their lives, why no one else was grieving......I never knew what he meant by that until all of this happened to me. I sit here in tears aching for my son. It has been 84 days since Thurston was born now, 84 very very long days, 3 drawn out months, 12 plodding weeks, it seems like a lifetime....and I miss him so much. I realize he is still here with us, that he made it and beat the odds. Too many people say, Hey you should be happy, you should be grateful and I am all of those things, but it doesnt take the pain away. I ache for the normal pregnancy I should have had, I ache to see my son, 24 hours a day, 7 days a week. I ache to have him in my arms, for him to drink my milk from my breast, to hear his sweet cry, to look in his eyes, for all the normal things that a newborn should be. It is very difficult for me to see pregnant women, especially in their third trimester. It is very difficult when I get birth announcements in the mail from friends with pictures of their healthy babies unfettered by wires, oxygen masks, and the look of pain and lack of sleep that often accompanies pictures of my sweet baby. I still cant believe that this is my reality. I wish things could have been different. There are still so many unknowns. Pain, Pain, go away dont come again another day, but it feels like your are here to stay........

He sucked He sucked He suuuuuuuuuuuucked!!!!!38 days 6 days

Last night was a HUGE night for little guy. When I put him on my breast I expected him to just swirl his tongue around it(which is hard to do with an ng tube by the way) and just kind of play with it but he sucked he sucked he suuuuuuuuucked!!!!! Like he really latched on and started sucking. He kept this up for about 2 minutes. He didnt get anything out(at least I dont think so) cause his suck is not that strong yet and I had just pumped, but could this be the start of something.......I am so determined to exclusively breastfeed him at some point even if he needs supplementing, I just know how beautiful breastfeeding was with Viola, the benefits are enormous,not just nutritively but emotionally for both of us. I was very excited. In other news, he is now doing 6 hours of nasal cannula a night and the rest of the time he is on Cpap. Not sure how long this will be, but his lungs still need so much help and who knows if the reflux is adding insult to injury, that is yet to be determined. He is also now 4 pounds 6 ounces and believe it or not he almost is growing out of his preemie clothes. He is actually looking like a little chunky monkey. Mamma couldnt be prouder of her little man.

Mother always knows best :38 weeks 5 days

Today doctor Breed called me. He said he was concerned about Thurstons oxygen needs and felt that by now he should have a lot less. He has been needing about 40-50 percent and what they want him to be at is in the 20's(we breath in 21 percent oxygen). He said that he noticed Thurston always arching his back and he suspected that he might have reflux which often times will make a child's oxygen intake increase due to silent aspirations...........WHAT....I was actually quite livid, not at Dr. Breed as I had not seen him in a while(we have about 5-6 doctors that rotate shifts) but because I have been bringing this up for about 3 weeks now as I have noticed his back arching, face writhing in pain, he has looked like he has been gagging a lot lately, and he has frothy bubbles at his mouth that have looked whitish, as if he had spit up. I have brought this up to all of the nurses, the nurse practitioners, I think I asked one of the doctors about it and also the Occupational Therapist, and all of them told me that they did NOT think it was reflux and because he is still ng tube fed, that it was highly unlikely. So now Dr. Breed is putting him on prevacaid and said that if it is reflux we should notice a difference in his arching and his oxygen levels within a couple of weeks. Seriously when am I going to listen to my instincts and just be more forceful about them. Dont get me wrong, I know all of them have a ton of experience and education and if it were not for them my son would not be here, but no one can take a way that gut instinct a mother has for her child. No amount of education or experience overrides that innate ability.

The pump is sucking the milk, AND the life out of me!!!!!!

Seriously, I mean come on SERIOUSLY......this SUCKS, literally and figuratively. I am DONE with the pump!!!!!!!!!! I have pumped before yes, when Viola was first born she had lost over 10 percent of her body weight so they made me pump and supplement her with the tube hooked to my breast. I then did this for a few weeks at home but never had to do it continuously throughout the day or anything. I then pumped when I went back to work and pumped a couple times a day. I actually liked pumping cause it gave me an extra little break at work where I could read a book and be alone in my own thoughts througout the day so I never had a pumping aversion per say..........but it is so different now, oh so different. The other day, Viola was holding the peice that attaches to my breast and we were going to go upstairs to take a bath, the phone rings, and suddenly I am in pumping HELL as when I went to go find the peice it was no where to be found. But I need this peice in order to pump, and if I wait til the morning to go buy it my boobs will be exploding and my body will think that my baby does not need as much, and my supply will go down and then I will lose all hope of breastfeeding Thurston when he comes home AAAAAAAARRRRRRGGGGGHHHHHHHH. This is the mental state of a preemie pumping mom. Its exhausting. Let me give you my daily senario. I get up, I pump. I wash pumping peices. I have coffee. I give Viola breakfast and sometimes me(I know I know I need to eat). I chase her around the house to get her dressed, I get me dressed etc. al. and we are ready to go out the door to........oh wait is it really almost time for me to pump again.....damn time flies when your trying to get ready to go somewhere. Ok so I pump again. Ok lets go Viola cause we only have a short time before we have to come back home for me to pump again. We fly like witches on broomsticks, go out, do our thing and then.....holy crap batman I am going to be late for my next pumping.....get home....oh crap I forgot to wash the parts.....run upstairs...wash parts.....shake them dry.....viola come over here let me read you a book...pumping again...............
This goes on until Chad gets home and i go see my sweet boy. Come home and pump. Then there is all the labeling, pouring into bags, freezing, calculating my daily output..........pant pant pant......

Really its actually exhausting. The part I hate the most is the sticky residue that gets left behind after I strip the lable off. I have tried baby oil and that was a fun slippery mess. I am afraid to try that goo gone stuff cause of all of the chemicals and I am afraid the chemicals will seep into the plastic and contaminate the milk..........
Now I am imagining doing this after Thurston comes home GULP.............This is also why I am determined to get him on the boob!!!!!!!!! I am petrified of how I am going to handle all of that and taking care of two kids, one of whom will probably be on oxygen and apnea/brady monitor and medications galore. Must....take....to....breast...............

......by the way, after an hour and a half of searching, I finally found the peice in a kitchen drawer......my sweet daughter had thought she was being a big girl putting it away where it goes....that melted my heart!!!!!

Double Noahs Ark Day!!!!!!38 weeks 3 days

Yesterday was Thurston's Noahs Ark Day. I nicknamed this day because he has been in the NICU now for 80 days and 80 nights. The time here has felt nothing short of a catastrophic flood. The tears I have cried probably could have filled his tiny little room full, his little ark incubator keeping him afloat......the medical equipment climbing aboard 2 by 2, 2 by 2 oxygen masks, 2 by 2 ng tubes, 2 by 2 needles etc.
I was very frustrated last night before I arrived at the NICU. Chad had to work very late (poor guy) so that meant me going in very late(midnight). I actually dont mind the late hours as much as the driving at night. It kind of creeps me out like the beginning scene from "Lost Highway", the car lights barely bouncing off of the road, and everything around a complete mystery.......so very David Lynch. Maybe I should of just threw in the soundtrack for good measure....make it even that much more ominous. The drive truly is a grind.
Anyway, Thurston is now up to 4 pounds 3 ounces and he is getting used to the cpap again. It sure looks uncomfortable. There truly is no adult that could handle this much pain. These babies go through so much!!!!!!! As for my visit, Thurston had his favorite Nurse, Ami(pronounced like the french for friend). She told me she was born during a Boston snow storm in a taxi cab and her mom had drank a half bottle of tequila during her contractions cause they couldnt make it to the hospital. She apparently was so out of it, she named her after the soap, bon ami. A nurse convinced her to leave out the bon part. But I feel, she truly is a good friend, to me and to my sweet boy. When I had walked in she had just finished giving him a bath and a theraputic massage with olive oil. None of the other nurses do that for him. She and Thurston have such a special relationship, I asked the charge nurse if she could be his one and only..........and so she shall. Thurston was very happy about that. We got to snuggle and that made the whole drive there so worth it!!!!!!!

The good, the bad and the ugly.......

I am going to encompass almost a month and a half into one post just to catch everyone up(I started writing this blog about 2 months after he was born) and also, because I don't remember everything so clearly, I was truly in a depressive mess. Thank goodness Chad's parents were in town helping us for the next few weeks, and my beautiful friend Karen came for 2 weeks after them to help us out. I just don't know what we would have done without them. His dad single handedly re-landscaped our front and back yards and his mom just took care of everything else, I just love them so much. And my friend Karen gave up so much to be with us and just helped with everything and gave me my hippy cow pow back!!!!

So the first month of a micro-preemies life is pretty daunting. I don't even think they weighed him much as they were trying to ensure his survival. He weighed 1 pound 4 ounces at the time of birth and I didn't even really want to know how much he had lost after that, he might of very well dipped under a pound. I think he was breathing on his own at first and his apgar scores weren't horrible for a 1 pound baby, but I vaguely remember them telling me they had to put him on the vent as he just needed a little more support. I remember I couldn't see him until a full day after he was born as I wasn't allowed out of bed because of my c-section. When I finally got up, they took me in a wheel chair dressed in that oh so beautiful hospital gown, doped up on morphine(a sight I have now seen so many times over after being in the nicu for 6 months, yet it still sends shivers up my spine even to this day). They had put Thurston in this little room because at that time he was the sickest baby there and they wanted to isolate him(some would argue he is still one of the sickest babies there poor little man). I remember them lifting the cover off of the incubator, and there he was, tiny, isolated, wearing these little sunglasses, with a jaundice/biliburn light shining down on him as though it were a spotlight, showcasing all of his fragility. I sat and balled, I couldn't even believe that was my baby. I remember thinking how in the hell did this little tiny person survive, how will he survive, how did they make tubes small enough for his airway, how did they intubate him, it was just surreal, and I do remember emotionally pulling away from him, a horrible thing for a mother to do, but I didn't want to believe that this little man could be OK, he just looked so sick, so fragile, so helpless.

Anyway, at first they were able to give his nutrition through his umbilical cord which I thought was fantastic as they did not have to put any IVs in him the first 9 days or so. That was the other thing I remember, just having to consent to a million things in the first few weeks of his life and allllllllll of the risks associated with it. You have to consent for a arterial line, so they can draw blood and not have to poke his tiny little feet a million times over(called a heel stick) so they can test for a million different things and monitor his blood gases(oxygen and carbon dioxide levels), we had to consent to blood transfusions(I actually lost count at how many he has had but I am pretty sure it is well over 20, which is a lot even for a micro preemie because he just lost so much blood and he was not oxygenating well on the oscillating vent), we had to consent to a central line that gave him tpn(total parental nutrition)because after they could not use the umbilical cord anymore, he had to be given nutrition somehow and he just was not stable enough to take anything by ng tube yet(nasogastric) down into his belly. Everything is a double edged sword in the NICU. Obviously if your kid wasn't getting nutrition, well, they would not survive, but the central line could have punctured a vein leaking nutrition in parts of his body that could kill him, and there is also a risk of infection getting into his body. Same for the arterial line. Blood transfusions could be tainted and cause any number of diseases, the list is endless. As parents introduced to this process, it is dizzying putting it mildly. There is also all of the medications; diuretics, antacids, antibiotics(at one point they thought he was septic and they did an lp or lumbar puncture or spinal tap on him to make sure he did not have meningitis ), pain medications, apnea medications, sedation drugs, dopamine, steroid treatments, supplements, nebulizers etc. Its just too much to list here not to mention all of the million xrays that he has had. Around week 2 I think his PDA(patent ductus arteriosus) was open(extremely common in preemies) and they had to give him basically what is ibuprofen and they told us if that did not work, they might have to close it surgically, another "whew" and hurdle jump for Thurston as his PDA closed with the first round of medication and for as sick as he has been, this kid continually jumps through almost every single hurdle you can think of so far(outside of his lungs). There is also all of the medical equipment, the incubator or Giraffe, the leads which are hooked up to measure his heart rate and lung rate, the pulse oximeter to measure his oxygen saturation, the oscillating vent, the regular vent, the cpap, the terminology and acronyms are endless: bpd,pda, cld, desats, EEG, apnea, bradycardia, hmf(human milk fortifier), hematocrit, LP, NPO(nothing by mouth)tpn, surfactant, NEC(necrotizing encrolitis)...just so many terms I cant even begin to name them all; they have become second nature, you really feel like you are in the first year of medical school.....anyway, you feel like a deer in headlights, like a zombie, all of the medical terms, risks, coming at you at the speed of light, it was hard to weigh the odds, you just had to really rely solely on the doctors and nurses, you nod your head yes through your tears like one of those bobble heads you put on your car dash. It hurts tremendously just thinking of those first few weeks.

After he coded on the third day, Chad and I pretty much demanded to know what to expect, what other issues Thurston might face, and what his chances of survival were at this point, I think we mistakenly thought he was doing OK the first couple of days but we came to find out that that was considered "the honeymoon period" where a preemie doesn't realize he is out of the womb, sort of, and after a few days, he says"what the....." Anyway, one of the Doctors took us into a room and told us that Thurston was very very very sick. She explained that because he was IUGR(intrauterine Growth Restricted) and was more like a 22/23 week old baby but even worse because he was stressed in the womb that his chances of pretty much everything a micropreemie could face was ten fold that of a "normal" micropreemie . She explained his chances for cerebral palsy were greater and they expected to find brain damage on his ultrasounds, he might not walk or talk, he could be deaf, and he was at a much higher risk for ROP(retinopathy of prematurity) and blindness. We asked her to explain what ROP was and she said that there was an eye doctor that comes in once a week or every two weeks to make sure that the disease doesn't progress and she said sometimes it progresses very quickly...I stopped her in her tracks and said,"please please I will pay the eye doctor to come in every day, I just don't want my son to be blind", my desperation at hearing all of these horrible things that Thurston could face was just too overwhelming. Chad and I told her that we were OK if and when they thought that he was just suffering too much that we would let him pass away. We just couldn't take our sweet little boy suffering this much. She said that we were not at that point yet but they would let us know. We walked out of that meeting completely dejected. I just couldn't believe this was happening to me, to us, to our son. As much as I was happy that he made it, I often thought maybe it would have been better if he had passed away in my womb. You think of a lot of things during this process. The good, the bad and the ugly.

At another point, a nurse practitioner, the one I call Dr. Strangelove, pulled us into a room and told us that his head ultrasound was clear(probably a week into his life). He reiterated cerebral palsy to us and said he fully expected that at around 6 weeks, when they do another head ultrasound, that they would find some sort of brain damage from the stress in the womb, and from his latest coding episode. I just told him that I used to teach a class full of students who had severe cerebral palsy and I adored every last one of them and we would just face it head on if that was the case. But deep down I was horrified, petrified, it is one thing being the teacher of a student with cerebral palsy, but being a parent, well that was a different story. I saw what those parents went through, yes of course they loved their children, but their lives were full of unbelievable hardships, and it gets harder and harder the older they got. I thought that if it became too difficult we could put Thurston in a group home. Many of the parents of the students did this and I NEVER EVER EVER judged them. I thought it was the best of both worlds. The parents could visit them every day, the kids were getting their physical and medical needs met, and the parents could take them whenever they wanted, on vacations, Christmas, holidays etc. Anyway, I continually kept trying to prepare myself for the worst case scenario. It was, at that time, the only way I could cope. Chad, on the other hand suddenly became the worlds biggest optimist. He continually told me, "He looks normal Donna, just little" I wished I could have an ounce of Chads optimism, Chad singlehandedly carried the both of us during that very dark time. He truly is my hero and my love and respect for him has grown infinitesimally during this process.

That first month and a half I cried every hour on the hour. I cried myself to sleep, I cried as soon as I woke up. I remember going to a park with Viola and my in laws, and I was still recovering from my c-section. That was my first outing and I cried the whole time. It was hard to see other people going on with their lives, with their healthy children. It was so hard to see pregnant women. When we got home, for some reason all of my neighbors were outside. No one had seen me yet, my in laws and Chad had done a very good job at sheltering me. I walked out of our van and turned around. Everyone was looking at me, with their faces of sorrow. I wanted to talk to them, run and hug them but all I could do was burst out crying and ran into the house. I just couldn't face anyone. Chad again saved the day and went out to talk to them. All of them of course understood(we truly have the best neighbors ever). That was truly the most god awful month and a half of my life. I didn't ever think I was going to make it through. I am sure there is a million things I left out and it seems like such a garbled mess of the first month or so of Thurston's life but there you have it, the good the bad and the ugly of it all.