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.

And on the third day, he rose again.......

I am not a religious person. I was raised catholic and started questioning everything during my teenage years and eventually, by my early twenties, pretty much eshewed the idea of a God. I guess if I had to classify myself I am kind of like an athienostic or and agnathiest with a little bit of paganism and humanism sprinkled on top. I don't want to get into to much detail but basically I believe that all peoples religions are valid. I get upset when one religion basically says that people are going to hell or are not going to be saved if they don't believe in such and such. It cracks me up even more when certain belief systems have different sects or offshoots and even if their basic beliefs are the same, those that are fundamentalist within those sects believe that only THEIR particular breed of that religion is going to be saved. Religion baffles me, but I respect every ones right to choose and believe what they want and as long as people are ultimately good and help one another, create laws that are equal and just and fair for everyone, and treat one another how you yourself would want to be treated, that is what is most important in this life.

Anyway, my son is a true miracle. He was supposed to die inside me, die in the first day of life, but was proving everyone wrong as he was doing pretty good by day three, or so I thought. I was in the hospital room feeling actually pretty good about our situation. So far Thurston seemed stable and I was making a lot of milk and I felt like hey, how bad could this be. No one told me about the roller coaster that was to ensue. One of my friends who visited me in the hospital thought I might be in a bit of shock still, "no way" I told her. "I feel great"(morphine + shock+ post partem = complete and utter denial).

I had just finished pumping milk and was going to walk down the hallway to the nicu to deliver it to my son. I was sooooooooooo proud of myself for keeping up with the supply. Right before I was going to get out of bed, the Nurse Practitioner walked in the room. Again with those damn eyes....I'm telling you doctors need to take an acting class so they don't give away everything on their face alone. Breathe Donna breathe.......
I am so sorry to tell you......breathe Donna breathe......that your son has just coded.......vomit Donna vomit.....and that we were reviving him for almost 10 minutes.....hes dead hes dead Donna......and right now he is in stable but critical condition and we are just not sure how he will do throughout the night..........

NOOOOOOOooooooOOOOOOOOOoooooooOOOOOOOOOOo..................I cant take it anymore, call Chad, get me out of here, I cant believe it, how could a small baby undergo anymore stress, anymore oxygen deprivation, anymore.....nooooooooooooooooooo I cant breathe, get me out of here, what the fuck is going on, who am I , call Chad, I cant breathe.......
I called Chad hysterical again. He couldn't understand anything I said outside of get to the hospital. I told him I couldn't stay there anymore. I needed to be home with Viola. I just couldn't take one more piece of shit bad horrible painful fucked up crappy news. What in the fuck is the universe doing to us. I felt like a pack of wolves ripped me apart, tore and shred me into tiny pieces, and left me for the crows, what in the hell was going on here.
Chad finally got to the hospital and we packed up everything. I actually don't even know if we went to see Thurston it was such a blur. All I know is that when I finally got home, I ran upstairs where Viola was sleeping and stared at her for hours, motionless, tears running down my face, wondering why me, why us, why my poor sweet little son....

And so on the third day my son rose yet again, almost exactly 72 hours after he was born. The symbolism is not lost on me, the irony staring me right in the face, was there a God beckoning me, mocking me, what.......at that point, I so wished I could believe in something, something that could get me through this horrible situation, it felt so devastating; isn't that how other people coped during a time of crisis, didn't they cling onto something ethereal, otherworldly, all powerful? In any case, I needed a huge dose of hope, where could I find that in such a dismal situation, is anyones guess....

welcome to the jungle....

So we all drove up to the hospital, my mother in law Patricia, my father in law Fred and my daughter Viola. I had called Chad and he was going to meet us up there. They checked us into labor and delivery, and hooked me up to all the monitors etc. At first it seemed like we might be OK and may just be able to buy a few weeks. No one was rushing around or acting crazy, so I thought, thank goodness we have family here to watch Viola as I thought I would be in the hospital for a while on bed rest. So the in laws and my daughter went home and Chad stayed with me. He was going to go back to work after a while as nothing seemed to be happening.......so we thought......oh boy were we wrong............

Suddenly a doctor walked in, not my doctor but a different obgyn. She told me one of my obgyns was on vacation and the other one had just worked like 48 hours straight. She seemed frantic and told me that Thurston's heartbeat was all over the place and we really needed to get him out, but that was our decision. My obgyn then called me over the phone and gave us our options but said this was the game changer that we had been waiting for to determine whether or not we would take Thurston out(funny I never realized we were playing a game here). She said that she knows we were waiting to get to at least 28 weeks but she thought that a few days would not make a difference and she felt he would be better out of the womb then left in as he was in distress. UGH UGH and more UGH.

The other doctor seemed very frantic and kept saying whats your decision whats your decision.......Like it was a matter of life and death, and i guess according to all of them it was. I never trusted those damn NST(non stress tests) and I had reiterated to the doctors that on his ultrasound his heart was fine, just his flow was bad again(they had told me once it reversed that is when we should get him out so now i was all over confused)

The pressure the pressure.......OK OK get him out. Seriously, just like that, just like on TV, it happened so fast. The anesthesiologist came in. Because I had been taking Lovenox, a blood thinner, they thought I should be put under for the c-section because I could bleed to death if I had a spinal. I had been pretty much just over 24 hours but the doc said she didn't want to take any chances. The anesthesiologist had other thoughts. In the middle of the hallway, he was trying to convince us to have a spinal because I had eaten breakfast and he thought I might aspirate to death if I went under....what the hell is going on here, either I could die from bleeding to death or aspiration hmm decisions decisions ugh....then the doc comes out to the hallway, pissed off as all hell and says, what the hell is going on here, I am all scrubbed up and ready to get this kid out.....the anesthesiologist and her have a few choice words. I'm swirling, like its some kind of crazy nightmare I cant wake up from.......she tells him that I was going under, lets go....they wheel me down the hallway, the lights going by one by one above me, my mind following in tandem, then into the operating room....Chad didn't realize that he couldn't go into the room if they put me under and everything just happened so fast. I had told him how sorry I was, how I didn't mean to put him through so much hell. Tell Viola I love her and she has meant the world to me, I really thought I wasn't going to make it.........suddenly they were shaving my pubic hair, pinning my arms down, putting a mask over my face, I struggled and told them I couldn't breathe, and then..........I awoke with Chad leaning over me in a corner of a large hospital room. It was over. Did he make it Chad? Is he OK. What the hell just happened?, where are we?, what is my name?, is this all just a bad dream?................

Just like Heaven.......24,25,26 weeks........

So my Mommy flew in to be with us for three weeks. Yea!!!!!!! I was so happy that instead of her being there to mourn with us that the news was so much better. We still were not sure what the outcome of all of this would be but we were definitley at a much better place. Did I ever tell you how amazing my mother is!!!!!!!! That Monday I had another appointment, and things just kept getting better and better. Blood flow looked awesome and my doctor told me that at this point, it would be best if I went on strict bed rest. She also told me to take a baby aspirin and I had to give myself injections to thin my blood in hopes to help the placenta continue to do its damn job, stupid misbehaving placenta!!!!!!. ( I was diagnosed with placental insufficiency and my son had IUGR, or intrauterine growth restriction because he was not getting the nutritents he had needed). My fluid levels went up again and by the 26th week were almost back to normal. I just thought for sure if I could keep up it up, that we might make it to at least 34 weeks. My doctor was also hopeful. I had asked her about the outcome in these cases, and she said she had no idea because unfortunately most women dont make it this far.......in other words they either lose the baby by now, or unfortunately, they decide to induce earlier on. That still haunts me to this day. What if we had decided to.......nope cant let myself go there......we DIDNT decide and I am so grateful for that decision every day of my life..............

up down up down up down up down......24 weeks and counting

Well, it was time for yet another appointment. Chad stayed home with Viola. She had had enough of doctors appointments. Her stamina and patience through all of this astounds me. For being two years old, she sure held her own. I almost think she knew her Mommy needed her to be strong. I went in knowing full well that they would still hear his heartbeat, as he was kicking like crazy inside me. I was so fearful that he was stressed out. I knew I did not regret my decision(although I really di not have a choice anyway) but I was worried that he was suffering. I went into my regular obgyn first and as I waited in the waiting room, of coures I couldnt help but start balling my eyes out. All of these damn healthy pregnant women kept pouring in, smiling, happy as ahppy can be. I couldnt believe the torture. how dare they do this to me, make me wait among all of these pregnant women.....wait oh yea I was pregnant too but with the knowledge that my child was going to die. Finally the receptionist who knew what was going on, fianlly came up to me and escorted me to the back. She apologized and hugged me and said no one should ever have to endure that much pain. I thank her between my tears and finally went into one fo the rooms. Both of my doctors came into talk to me. They listend and heard the hearbeat. I asked them if they coudl guess at how long it would be. They said there was no way of knowing but they said if they had to guess it would be less than a weeks time. They explained to me what would happen when he finally passed away. They told me I could come in through the back door and I would never have to wait like that again. They also cautioned me that if I started bleeding etc. that I should call them first. if I did go into a hopital they would try and get him out and ressusitate him even though they coudl nto force me to have a c section I am actually not sure what would have happenend but I did nto want to find out. I knew that I wanted him to have a quality of life(he was still under a pound at that point, he just would have been too little, too sick) so I told them I would call them first and then they would advise me what to do. Anywyak=, we made a plan to check again after the weekend. I also had an appointment right after with the high risk docotr. They wanted to see if his flow had reversed yet and then they coudl give me a better idea of maybe how long he had
The regular docotr was not there, but they had this australian guy who actually showed up in bike gear. I thought I didnt want soemone new. Its just too overwhelming at this point. Anywya, got back into the room, lay down, lift shirt up, squirt gel on tummy, start ultrasound yada yada yada. The sonographers face was funny while she was doing the exam. I figured, hell what news could she possibly tell me that could top the death of my child. She told me that his fluid had gone up.......WHAT!!!!!!! She also said it looks like he gained a little bit of weight. he was now 15 ounces(he had been about 11 ounces before). He has grown a little, she told me. She then looked at the blood flow to the cord for a looooooooooooooong time. I really had no idea what she was looking at, what she was measuring, but she said, "hold on let me get the doctor, I will be right back". So the Aussie came in and looked at the ultrasound for a while as well and said,"HEy dont give up on this kiddo, he looks like he might have a chance". My heart SANG!!!!!!!!! What news is this floating into my ears!!!!!!! I was beyond elated but also, so confused. He went over all of the details and told me that the blood flow is now back to normal. He said, "dont give up hope just yet, this kid is a fighter". I just couldnt belive what i was hearing. I just didnt want to believe after all of the grief that i have felt, could this really be true. Could my child really still make it. The emotions I felt were insane. The huge rock that was sitting upon my heart floated away(although it left a lasting dent for quite a while after). After all of the ups and downs, this was definitely an up that I would take and hold onto for dear life........

Brave new World.....Brave new Mommy......

Well as you can imagine, the next two days of my life were the most painful I will(and hope to) ever experience. I could not stop crying. I kept feeling him kick. I talked to him. I sung to him. I tried to enjoy him. I tried to get to know him. I tried to imagine what he would be like. I tried to accept that he was not going to make it. I have never experienced grief like this. I have never had anyone very close to me pass away outside of my grandfather and my cousin and both of my cats, Buzz and Fido. This was soooooooooooooooooooooooo very different. I kept trying to be positive through my tears. I kept trying to feel lucky. Lucky that I got pregnant so easily, so many women and men have so much trouble, I thought, lucky that I got to carry him this long, so many people have miscarried, lucky that I got to feel him kick, so many people have never got to feel even that. I thought how lucky I was to at least have had this time with him. I fought through the tears. I rubbed my belly. I was relieved my Mom said she was flying out and would be there Saturday. There is nothing more genuine and more unconditional than a mothers love. I felt hers, as I so hoped Thurston felt mine. The night before my next appointment I kept telling him that it was ok for him to pass.....that I was his mommy and mommies have to be brave, that I would understand if he let go. I promised him I would always love him. That I would never forget him, that he would always be a part of our family. I kept saying it over and over, mommy is brave so you dont have to be, mommy is brave so you dont have to be, mommy is brave so you dont have to be.......

This is the end.....How to disappear completely: Part 2

It was beginning to be about mid afternoon and Chad and I finally decided that we would go home and wait for Thurston to pass away. We actually both felt good about our decision. Obviously we were not happy, but we did not want to have any regrets. The doctors stressed to us as well that we both need to be on the same page because if we were not, it could cause great hardship in the future for our marriage. Thank god we were both on the same page. Then, finally my obgyn came in. She sat down and before she said anything I had told her that we decided not to have the induction, and that we would just wait for him to pass away. She told us she couldnt be happier with our decision because we wouldnt have been able to do the induction anyway. She said that all of the doctors and administrators had to sign off for us to have the induction and there was one hold out..........the neonatologist. Suddenly, dr. Mcormick came in. She is a doctor in the NICU and was going to explain to us why she would not sign off on the form. We told her we had decided not to go through it anyway, and she looked relieved too. She said that we were right on the cusp of 24 weeks which is a point of viablitiy for a baby and a cut off to have an abortion(again I hate that word because I just never thought that that is what it was). Although, earlier, another neonatologist came in and gave Chad and I the statistics of a 24 weekers chances(which are grimmer than grim) and that because Thurston was more like a 21 weeker, that if we had a c-section to get him out at this point he would probably not make it....they didnt make tubes small enough for him, and even if he did he would most likely have extreme severe disabilities. Anyway, we decided to go home, to grieve, and we made an appointment for Friday, two days later, to see if his heart had stopped beating yet. I convinced them to give me the second steroid shot anyway, even though it seemed futile(to everyone but me) as I figured, well it cant hurt but just in case, just in case that 10 million chances to one that somehow he holds on I know that we did everything we could to help him once he came out......................