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......................

The day the Earth Stood Still...Clatu Barata Nikto......Almost 24 weeks

I remember my love for older film started when I was very young. I remember watching "The day the Earth stood Still" with my mother when I was around 4 or 5 years old repeating over and over clatu Barata Nikto in my head as if MY life depended on it.....How I wish those words worked on this day, the day my Earth stood still, probalby the worst day of my life.......

We went back to the perinatologist, the high risk docotor. We were to get the results from the amnio. I actually had a pretty good feeling about it for some reason. Maybe I just wanted to believe that everything was going to be ok. We got there and Chad and Viola came with, I knew I could not handle this part alone. We got in the room, I jumped up on the gurney and lifted up my shirt(it was beginning to be a routine now) and she began the ultrasound. She checked the fluid and it was the same. She took some more measurements etc. and I was just so impatient. I wanted to see the doctor for her to tell me my son was ok. Hurry Hurry Hurry. Finally, the doctor came in and sat down. Hurry Hurry Hurry.....She had both that look that says, "do you want the good news or the bad news first". The good the good the good please!!!!!!! Ok well we got the intial tests back and your son DOES NOT have anabnormality. YIPEEEEEEEE. I was on cloud nine million. What great news yea......but WHOA...not so fast missy. Its not all good news. CRAP. I could here the BUT a mile away.
BUT your son is not getting the nurtrients and oxygen he needs. It seems that we can now whittle the problem down to an issue with the placenta maybe. Its now a wait and see from here on out. We can do weekly exams to see how he is growing, to check the fluid level etc. Chad Viola and I were about to leave when the doctor called me back and said, "let me just check the blood flow really quick". So I went back in the room again, lifted shirt etc. etc. and she checked the blood flow. She said yup, you have end diastolic flow from the placenta to the baby. She said basically the flow should still be flowing even when the heart stops beating(didnt know that but your heart actually takes a tiny rest in between beats) and when Thurstons heart was resting, evidently so was the flow. Not good but at least it wasnt reversing yet she said. That is the worst sign and really, at his gestation there would not be much hope so she said this is at least good for now. She sent me to go get my blood work done to see if maybe I had a clotting disorder as this sometime causes the placenta to malfunction. Then she said I need to go to the hospital to get a steroid shot in case (well not in case, it was pretty sure that I would be having an early delivery if this kept up) we delivered prematurly.

So Chad and I went to the hospital, and they sent me to a room where they hooked me up with an NST test(non-stress test). After about 30 minutes we were getting antsy to go home and poor Viola was getting restless. I asked the nurse did it always take this long to get a shot in the ass, trying to joke a bit. She said they just needed to get the approval or something so we waited and waited and waited. It was seriously about an hour now and I was about ready to to tell Chad to take Viola to eat when I saw not one of my OBGYN's but both of them walk in the room. What it takes two doctors to administer the steroid. And then they had those same DAMN faces that the perinatologist had when she first broke the news about my pregnancy. My heart started beating fast again. I knew this wasnt going to be good.

They both sat down and took my hand. They explained to me that his heart rate was all over the place. That from the looks of everything, that my beautfful baby, the one I spent months trying to convince Chad to have, that I had dreamed about, that I wanted for Viola so desperately, was not going to make it. That he was too stressed in the womb and that it was only a matter of time before he met his demise. It was just too much to take. The tears flooded forward, projectiling onto the bed. Chad started to tear up. Viola now had to see me and daddy cry. I think we asked them to explain everything and again, I just remember talking heads. blah blah blahbady blah blah. I couldnt believe this was happening to me, to my baby. why why why why why.

They went over our options. We could induce him, and get him out, or we could go home and wait for him to die. WHAT THE FUCK KIND OF OPTIONS ARE THOSE.....I thought to myself. I wasnt sure if I could handle the pain of carrying him around inside me, everyone asking me the proverbial onslaought of pregnancy questions "hows the pregnancy going", "how many weeks are you now", "is it a boy or a girl". I thought I would tell them to all Fuck off. I thought a lot of things. Chad and I tried to mull it over, how the hell do you mull something like this over. I still couldnt believe this was happening. By the way I am crying the entire time. At one point as Chad was holding my hand, I asked him"even if it just to humor me, do you think we could look into adoption". I will never forget what he said and it just solidifies my love for him and how lucky I am to have him. He said,"Well I guess if we have to endure losing a life, maybe it would be good to save one". He always knows what to say, even in the most excruciating painful circumstances.
We at that point thought that we would go ahead with the induction. The doctors were pretty convincing that he was not going to make it, and I did not want him to suffer any longer even though I was constantly changing my mind a 1000 times a second. They made Chad and I sign this thing and they left. Chad took Viola to get some dinner and when the nurse came back in I told her I didnt want to do anything without Chad here. I was already having second thoughts. My mind never raced so fast in all of my life. I just couldnt think straight. we had already called our parents and they said whatever we do they would support us. We have AWESOME parents by the way. Chad came back and I told him I changed my mind I think. How the fuck can anyone make a decision like that in such a short amount of time under that much emotional duress. One of the doctors finally came in and told us that by Texas law, we had to wait 24 hours because it was considered an "abortion". WHAT.....I did not even think about that word. I was dumbfounded because I guess when they told me he was going to die, that he was dying in my womb, that an induction would just be ending his suffering. That put a whole new spin on everything. I was actually relieved. There was no way I could make a decision like that in that short of time anyway.................next the longest night of my life.....

Heart Attack....23 weeks....

So Chad took the day off of work and we drove with Viola to the heart specialist. Thats the thing when you dont have family to help out, ya gatta take your kid everywhere, under the most stressful of circumstances. Yet it has also made us this really strong, tight little unit it has. Kind of like we are all in this life together and we do everything and I mean everything together no matter what. It definitely has made us stronger fer shure!!!!!!
Anyway, the docs office is located downtown so it is a bit of a drive. We walked into the building, and it reminded me of an old Victorian insane assylm. If the circumstances were differnet I would have been enthralled as anyone that knows me knows I love anything from the past, especially 1930s and before but in this case, it was creeping me out. Anyway, the doctor was running late as he had a last minute case at the hospital down the street so we waited, and we waited and we waited......

Finally they called us back into one of the rooms. We waited in there for a while as well. My poor daughter, I thought. She sure is one patient little girl. Finally we were escorted into another room where Chad and Viola were allowed to sit and watch Curious George the cartoon movie. We had never seen it before and Viola actually enjoyed it thank goodness because my examination took the entire movie. And the entire time the doc was doing the ultrasound, he was completely silent......I mean like a silent movie silent, with no orchestra, no organ accompianiment, no cute 1920s cartoon sound effects, painfully quiet. That made me so nervous. He was marking things down, looking and looking over and over again. Finally, as if it was planned as soon as the credits to the movie rolled down he said, "ok I think we are done here, I got what I needed". So with bated breath I looked at him like, "OK tell me everything what is wrong with my babies heart". He told us to go back in the other room and he would talk with us. Tears were pouring down my face. I knew something was wrong. I could feel myself wanting to throw up, my stomach creeping up my esouphogus. We waited patiently again, and finally the doctor came in. I was standing in the corner, leaning up against the wall hoping that it would hold me up when he told us the horrible news. He looked at Chad and then me again and said,"well I looked for a very long time and I was very thourough and i want to let you know that it looks like your sons heart.....................is completely normal". WHAT.....my knees buckled, I could feel this unbearable weight suddenly fall off of my shoulders, I started crying, I looked at Chad with happy eyes. The doc explained why the first doctors thought there was a heart defect and said it is very hard to see anything with this low of fluid. He drew us a diagram and everything but assured us that Thurstons heart was normal. Chad and I thanked him and he wanted us to have a follow up appointment in a month. I couldnt believe how relieved I was. I knew that if he did not have a heart defect that the chances of a chromosonal abnormality were also low.
We actually felt like celebrating a little. We knew that there was still something wrong with Thurston but this was a victory, a small victory, but a victory nonethelss. We went to Mohters cafe, our favorite vegetarian restaurant in Austin. we knew we could at least have a somewhat normal weekend now. At least until the next appointment.......
V

The day that my whole world stopped......23 weeks

So I met with the high risk doctor today. I was sooooooooo not worried at all. I just thought maybe I need to drink more water. I had just left a wonderful playdate with Viola. She came with me and played with toys while I sat up on the table. The sonographer came in. She was as nice as pumpkin pie, seriously such a sweet sweet girl. As she sat looking at the scan I had asked her to confirm if it was a boy as I seriously did not trust that last sonographer. And she confirmed it. I did see some worry in her eye. She kept measuring the baby with her instruments and kept looking at his heart over and over again. I asked her about the fluid and she said that it was very low. I started to panic a little. Then she said she thought she saw something in the heart. I really started to worry. She then said, "let me get the doctor". I called my mom immediately. We have some valve thingy that runs in our family. I think both my sister and grandmother have been diagnosed with something else, and Viola and Chad both have a heart murmur so I was praying and hoping it was something along those lines. Then the doctor walked in and I told my mom I would call her back. She had that look in her eyes. I will never forget that look. That, "there is something really really bad I have to tell you" look. She sat down and said she thought there was something seriously wrong with Thurston. She thought it could be chromosonal based on the fact he was measuring 3 weeks behind(more like a 20 week old fetus), his fluid was low and he looked like he might have a heart defect. It seriously felt like she was talking in slow motion....almost like a charlie brown adult but in slow motion. I could feel my stomach hurling, I could feel my heart beating, I could feel the world collapsing around me. I think I screamed hysterically, and then I remembered Viola was in the room(She had been sitting there patiently for over an hour and a half during the examination bless her heart). I picked her up and held her. She looked at me funny and said"mommy crying". I will never forget that moment. It haunts me to this day.
I told the doctor I needed to call my husband. I am not sure of what I told him over the phone outside of get over here as soon as you can. Chad came and was so calm. He just has this strange ability to be calm during the most stressful of situations. The doctor went over our options. She asked if we wanted an amnio to see if he had a chromosonal abnormality. We said yes. She then said we could see a heart specialist to see what kind of heart defect Thurston had. Everything just happened so fast. Chad took Viola out of the room and the doctor did the amnio. She couldnt get any fluid because it was so low and it hurt like hell. She poked me twice and then decided to take a sample from the placenta instead. Tears were pouring from my eyes. I couldnt believe this was happening, and way too fast. I wanted time to stand still, like in Narnia. I wanted to process it but I couldnt. I felt like I was inside a blender. The blades cutting me into small pieces that I couldnt begin to put back together.

When we finally got home, somehow I managed to call the heart doctor and made an appointment for the next day. Seriously I don't remember the rest of the night. There were alot of moments that I have buried deep inside me. This was one of them.

So my OBGYN called me today and told me that not to worry but my amniotic fluid was on the low end. She said it is still normal but she wanted me to make an appointment with a high risk neonatologist just to make sure......................I of course said well should I make one right away, and she said it doesnt seem that worrisome so I made it for a week later, boy had I wished I would have just gone in sooner. I was somewhat put off also, that it took two weeks AFTER my 20 week scan for them to call me as they had noticed the low fluid, and also, why didnt the sonographer notice this right away......this whole things reeks of "shoulda, woulda, coulda", and "had I of known", and "I wish I would have done things differently".......

Anatomy of a scan: 20 weeks

went in for 20 week anatomy scan ultrasound and to also find out sex of baby!!!! I had been on the fence about finding out as I thought it would be a nice surprise as I would be happy either way(I was thinking it would be nice if Viola had a sister, but a boy would be lovely too...whole different experience). Chad and Viola came with me and the sonographer was lets just say ABRUPT. She seemed to be getting upset that she could not get him to move and she said she could not see his heart because of his position. She then asked me a very strange question "have you been bleeding or spotting"? "No" I said, "is something wrong". She said she saw some blood spots on the placenta. And then told us it was nothing to worry about...........So after a while she said she might not be able to tell the sex of the baby because of his position. I told her not to worry about it as we had a genetic ultrasound on Monday, So we could check all of the stuff she could not see. She gasped and told us rather snippy, "Well that is what this ultrasound is and your insurance company is not going to pay for it". Chad and I talked later at how put off by her we were. She then convinced us that everything was ok, he was measuring fine, and that we could see the genetic specialist at the 28 week appointment.(ironically, my pregnancy did not even last that long). That little tick in my mind told me to keep the monday appointment, but I eventually just cancelled it. Boy do I wish I would have just kept that appointment. You will find out why in the next post.......

car accident: 12 weeks

Viola and I were headed to the park around 10 in the morning. Stopped at a red light for at least a few minutes when WHAM out of the blue some guy slams right into the back of us, shattering the back of the van. Poor Viola saw the whole thing as she is still rear facing. My neck really hit the back of the head rest pretty bad. My first thought was, "oh my god Viola" my second thought "oh my god my baby". It took me a second to get out to check on Viola. I was pretty hysterical. When the driver of the car got out he was crying because i was crying. Viola, although upset, seemrd to be ok but all i kept saying was, i am 12 weeks pregnant oh my god i am so worried oh my god..............we went to the obgyn and the babys heartbeat sounded good and they didnt seem too worried....i still was.........

Positive Positive Positive

Positive Pregnancy test......I peed on a stick at freebirds of all places. I just couldnt help myself. I was too excited to wait!!!!!!!

Sometime in August 2009.........

Finally I talked hubby into having our second sweet baby. He was adamant about not having another one, I was adamant about having one. We both laid out our arguments for and against and somehow after months of finageling I was finally able to convince him to go ahead and try for baby # 2......His biggest argument against another one was his fear of something going wrong with the pregnancy....I told him that the chances were so small since we had such a great pregnancy with Viola, that this pregnancy and baby would be just fine.................