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!!!!!!!