Warning: Long, rambling post ahead...at least that's what I anticipate....I apologize in advance...I just want to be sure and record this for myself....and those of you still reading will have to muddle through, I guess.

I keep thinking that I'm doing really well...and in many ways, I am...I find that I am laughing a lot and am generally feeling optimistic much of the day...then on the drive home at night I sometimes just burst into uncontrollable sobs without really understanding what the real trigger is...most of the time it is my attempts to feed the baby though that set me off. I feel so incompetent and it is so hard for me to leave her with other people to tuck her in and meet her needs...especially when they don't do things the way that I would. I find myself getting much grouchier about her care and often I have to say nothing to prevent myself from saying somethign that I will regret. Example? One of the nurses replaced her NG tube with tubing that was so long that it was a good 2-3 times the length of her body. She didn't tie it up or clip it away or anything. I came in and it was wrapped all around Zoe's face. I nearly had a fit....It took every ounce of self-controlt hat I had not to burst into tears and...yell. I rolled it up like a hose and then taped it. The nurse's watched me, but said nothing. Later, I was able to comment that I would like it kept away from her so that she doesn't strangle...and I still don't know that I was super polite. I want her home...I want to snuggle her in my bed, put her in her bassinet, carry her around my house....not be tied to a NICU chair. I just want her HOME. Can I just say though that the NICU nurses really are fabulous, wonderful people and I don't have 'real' complaints...the problems I'm having now are really a result of me just fealing worn out. These nurses really make me want to become a nurse....

Thomas and I have been alternating between fighting and being civil and Friday night, I just lost it...I got so angry that I kept calling his cell phone and ....*gulp* hanging up. Rolling Eyes Yes...maturity is on my side these days. Rolling Eyes It all started with Amanda's Birthday. She decided that for her present, she wanted a new bike. We were supposed to go together (she, Thomas and I) on the weekend to get it, but she talked him into going on Friday without me....after dh complained about my messy car (it...is actually quite messy, but he didn't have to be rude about it) they finally talked me into letting them go alone.

She came back with a BLACK and BROWN boy's bike (Complete with boy bar) and a black helmet...I totally FREAKED out about it....as silly as it sounds. I just couldn't get over the fact that he bought her a boy's bike and that it was black....actually, I'm still not quite over it if I'm honest. I feel annoyed that my daughter now rejects anything femine...and also insists on wearing a single pair of pants to school right now that is so full of holes that it is simply embarassing. I was so angry with Thomas that I couldn't see straight and so disappointed in my daughter's choice that I struggled to make eye contact with her at all. I don't know why I let it get to me so much. I want to be able to embrace her where she is at in her life right now, but I just...I can't. She makes it so hard with her sass and obvious rejection and then embrace of me. Part of me also wonders how Thomas could manage without me here...Every time he makes choices that I wouldn't I get more upset than usual...because I imagine that if I were to not survive this...that...he will sometimes make choices that I wouldn't and I won't be here....

He went out on a boy's night out Friday night and I felt so resentful...and yet here I am always gone at the hospital etc and he's usually the one who has to take care of the kids...I should have been more understanding. I WANTED him to go and have a good time but then when he did, I couldn't let it rest.....I can't believe that I reacted the way that I did.

I was near tears anytime I was in the NICU this weekend because I feel like if Zoe stays much longer that quite honestly there won't be much of a 'home" to come back to. The tension is so thick that you can cut it with a knife and I don't know how much more stress we can tolerate. She's been in the NICU for 3 weeks today....and she's still not taking the majority of her feeds by mouth. She is also very, very sleepy....something I was told may need to be investigated if it doesn't improve. Embarassed

The lactation consultant came in to see me on Saturday. She wanted me to try the supplemental nursing system. For those of you who don't know what I'm talking about, you can learn all about it here:
http://www.medela.com/NewFiles/pdfs/SNS ... angIns.pdf
It will likely be more information than you want to know. Laughing Anyway...she came in and basically asked me to....disrobe in front of her. She is, of course, in perfect physical condition and there I am fat, with black lines drawn all over my sides and chest for the radiation and with boobs that pretty much hang down to my knees (sorry guys!). She got me a gown when it became apparent that I was embarassed (I've restarted an annoying habit of getting flushed everytime I get upset)....and then she noticed my bra:

"Oh...MY...."

I realized this is my most comfy bra...that I've had for about 5 years...but it also is ... sigh... no longer white...more like...gray. Rolling Eyes Yes, the dawkter's wife wearing old, gray, wal-mart bras!

"Kris, it isn't even....padded"

double sigh....I nearly started crying. I promised to go shopping for new bras (and yes, I dropped $50 on just TWO bras the next day...and man...does it make a HUGE difference. Who KNEW I could get those little girls to stand back up again!!! Mr. Green )

Then, she proceeded to "help" me get Zoe latched on, etc for an hour.... I think I just finally zoned out and decided it wasn't really happening. Then...she came back on Sunday too....and by that time, I was just...resigned. She is a neat lady and she wants to help....she can't help it that I'm embarassed by my body and my breasts. She did mention that my breasts are "heavy". I'm definitely getting the girls lifted someday...really.

OH...I threw away my dingy bras....all of them. ewwwww!

The supplemental nursing system has some bugs and I just can't get it to work right...so this weekend, I was fumbling around with the poor lactation consultant watching and helping...then later on my own with the nurses behind me at their desks even though I was hidden behind a curtain. The whole time I tried to "nurse" Zoe, I imagined that they were asking themselves why I didn't just "give it up" and I'm sure that they think I'm harming her or preventing her from going home now in some way.

Several times now, they have reported being able to feed her most or all of her feed by bottle...and when I come....she rarely takes 1/2. I feel like they think that I'm not a good mother to her, that I'm holding her back by not feeding her well...then I ask myself if I AM reluctant since I so desperately wanted to be able to breastfeed...then the crying starts all over again. Sad


Also, while I was in the middle of trying to use the supplemental nursing system on Sunday, my OB stopped by to see how I was doing. He came in behind the curtains and I tried to cover up a little bit...but I think he pretty much got an eye full. Embarassed All I can say though is thank God for him...he is a wonderful, caring doctor. He took time to come and see me on a Sunday while he had call and asked about my emotional state. I joked around and told him that I was hoping to become a professional alcholic when this is all over Mr. Green at first, but then was able to tell him how hard things are right now...and he listened and he understood. I am so glad that he came into my life....he has been a huge help to me. I wonder if his wife was sitting at home on Sunday grumbling about the wasted weekend because he was on call????

Funny thing...I have a RX for Reglan that I got from the oncologist. In a couple of moments of weakness I did end up taking two of the tablets to boost milk production...but when he said a clear and resounding "NO" I stopped...I value the dr/pt. relationship and don't want to lie to my doctor. His nurse, upon hearing this from me last week when we were discussing the whole nursing trauma said "Oh, KRIS...Grow UP...if you have the Reglan, by all means take it for a week and see what it does!" Shocked Apparently though, she shared this conversation with him and when he saw me on Sunday he said "Oh, btw...I think the Reglan would be ok at the anti-emetic doses". Very Happy


Back to the breasts....aren't you glad you're reading? Since I'm having radiation to the chest, this has meant all kinds of flashing for the public....well...for the radiation techs and rad onc anyway....This is probably more embarassing to me than letting them see my chubby midsection. I have drawings with black ink on my sides and...they gave me a little dot of a tattoo on my right...breast. Rolling Eyes I suppose this is my...souvenier? ugh! Every day I have to strip from the waste up and lay on the table semi-exposed. The worst part is that...they took PICTURES of my....breasts....

I had forgotten about it until I got in and saw the rad onc. He was looking at my chart. The front has an obnoxious picture of my face...and the back...the part that was staring right at me? My nipples. Rolling Eyes After 5 children and weight gain and loss....let's just say that they aren't really playboy material anymore. Embarassed It's just so humiliating!!!

Today, the rad onc called me "not a complete responder" and I it just upset me so much....I can't hear anything negative. This was a new guy and he basically said "we got the baby out alive, now we need to get you out alive"...and raised an eyebrow at my info....I felt like throwing myself in front of a train when I left his office....

I just have times where I can't help but to think that this all shouldn't be happening...to anyone...I feel this startling shock and sadness. I wonder how people face death and uncertainty with courage? I can't do it. I am terrified of dying, and I barely am able to manage the uncertainty of a disease where I know that the statistics are on my side. How can people cope with diagnoses of almost certain death? I am in awe of the strength that many people possess.

I sometimes feel that I've lost hope...at those times, a song that I hear on the radio can take me back to times in my childhood and the memories and images are so vivid in my mind that I wonder if my life isn't "flashing before my eyes. The days immediately following the PET scan were terrible for me...I simply don't want to do this anymore.. I want to be spending time with my children and my husband enjoying life like we did before. Right now, even when I am here...I'm not here. I am impatient and tired...and I know that this is hurting them. I keep begging myself to stop focusing so much on my own fears and I try and redirect my attention to them...but it is just so hard. I imagined that after the PET scan I'd be feeling better about all of this, but now I feel worse...even though I've been assured that the radiation "will take care of it". I am continuing to adjust to all of these changes and uncertainty.