quest for a faerie child

my heart breaks...

whenever I look at this picture:

I know every momma thinks their baby is the most adorable thing they've ever seen...but COME on... who could resist this child?   

In other news, Moose and I are finally doing the marriage thing.  I mean, Max is 17 weeks old.  It's about time, right?  In our defense, we had planned to get married last summer and then the first twelve weeks of my pregnancy hit and any thought of doing anything but lying in front of my air conditioner with my stomach doing the queasy jeebies, was left by the wayside.

Then we considered doing it before Max was born.  But, he decided he needed to make an early entrance.

So, we have now settled on May 1st, which satisfies my need to introduce a little of my pagan side into our marriage, as well as Moose's desire to have it on a day he can easily recall and truth be told, I think he likes the idea of having it on Beltane/May Day, as much as I do.  At 10am, it will be official in a very very low-key little ceremony with a handful of people.  I wish I really knew what the weather was going to be like, because I'd prefer to have it up on Mt. Tabor.  However, I fear it may be raining again that day and wedding + rain + outdoors does not equal 'good time'.

The emperor's labs on Monday were better.  His BUN was down to 50 from 62 and his creatinine was 2.5 from 2.6.  Sodium was the best it's ever been and everything except for his CO2, was good.  Of course, now that he's growing like crazy (11lbs on Monday), his electorlytes keep getting out of whack and we are having to adjust things after each set of labs.  This time it was the CO2.  Last time, it was phosphorus.  Overall, though.. he's good.

Moose has been working from home the last couple weeks, which has been an enormous help in terms of my being able to work from home, as well.  We manage to schedule our work time around each other so that we can have uninterrupted time while the other one takes care of the emperor.  Plus, I just love having him home all the time.   I find when I come in to work on Friday's that I miss them both like crazy and just want to be back home again.

In other news, I've begun tentatively talking with my mother from whom I have been estranged for almost two years.  I think I have come to realize that she simply does not have the tools to deal with things the way I would expect her to and I'm not sure it does me any good to take the hard stance of not having any kind of relationship with her.  I am now trying to simply lay boundaries, the largest of which will be that my family will have no contact with her husband, ever.  Other than that, I have also put my foot down about drama.  I will not have it introduced back into my life.  I've led a very peaceful existence for the last 2 years in that regard and I don't have the emotional capacity to deal with any more stress in my life.  It's sad that I have to do that, but I guess it's a fact of life...

or rather a fact of my life...

what is and what will be

Ahhh my little diary, it seems I have foresaken you for a skinny, bald, toothless, stranger, who pees his pants and doesn't speak a word of english.  What can I say?  I am in love and everything else just falls to the wayside, including my one-time daily rants about life.

Seriously though, life with the emperor will forever be known as pre-g-tube and post g-tube, or at least probably until we get to pre-transplant and post-transplant.  For now though, we are post g-tube and I must say that his doctor's were right (imagine that).  Post g-tube life is quite heavenly.  Gone are the days of constantly worrying that the emperor is not getting enough food.  Gone are the hour and a half feedings.  Gone are the sleepless nights, the sleepless days.  Gone are the worries about whether or not he's gotten all of his meds. Gone are the struggles, the spit-ups, the projectile vomits.  Gone, Gone, Gone.

Now that Max doesn't have to eat every single meal by mouth, he seems to really enjoy those that he does.  Now that he doesn't have to struggle through 8 feedings a day at an hour and a half a piece and is still getting 50% more food than he was pre-tube, he is happier, more active during the day and gaining weight like a normal infant would.  He's gained almost 2 pounds in the last month and is now a whopping 10lbs14oz as of yesterday morning. 

Now that Max is on a pump overnight which continually drips 55ml per hour into his little tummy, he sleeps anywhere from 8-10 hours per night in a single stretch, which means I get yummy yummy sleep.  Though, I do get up and change him 5 hours into the pump because he's a pee monster and soaks through every cloth diaper, diaper doubler, wrap, wool-soaker combination I can think of if I leave him longer than 5 hours.

There is one dark cloud hovering just above the horizon, though.  Max's labs 2 weeks ago were again somewhat concerning.  His BUN was 62 again, but his creatinine was still at 2.6.  His doctor thinks it could be because he's eating so much more.  However, she's unsure.  She is concerned but wasn't soo concerned that she wanted us getting labs sooner than 2 weeks.  She did mention the dreaded "D" word again, but I shoved that to the side and refused to dwell on it for the time being.  We'll see how his labs on this coming Monday are and cross that bridge when we come to it.

One thing I have realized is that it is best to take things one step at a time when dealing with a chronically ill infant.  People ask us all the time if Max is on a transplant list and for details about what happens with a transplant.  But the truth is, his doctors haven't even discussed that with us.  In fact, we haven't truly even discussed the reality of dialysis.  It isn't that I don't want to know these things and it isn't that they are keeping us in the dark.  I think the reality of the situation is that they don't want to overwhelm us with information on a situation that could be a long, long way off and I am realizing that I have enough to deal with in just caring for Max on a daily basis. 

Usually, I need to know everything about everything right away.  Pre-Max, when faced with a situation such as this, I would have headed straight for the internet and driven myself crazy with researching.  But, I've learned that there is something to be said for living in the moment.

There's just something to be said for that...

I'll get the information when I need to and when I can be mentally prepared for what it is that we will face.  Until then, Max deserves my undivided attention on his current status, not on what may or may not be...

repeat as necessary

After biting the bullet on the big G-tube, the emperor defied my previous statements about being unable to take what he needs and ended up taking 505mls of formula and an additional 128mls of free water yesterday.  This is so uncharacteristic of him that I actually had to put in a worried call to the nephrologist last night.  They think it is just a result of his sodium being higher than usual, because his labs looked much better yesterday.  His creatinine is now 2.9 and his BUN is back down to 31, which was better than the last labs we'd gotten before he was admitted for the infection.  We may have narrowly dodged dialysis once more.

Life with Max is a great big roller coaster ride... what else can I say? 

We are not going to revise our decision about the G-tube, because 1 good day does not a "consistently good-eater" make.  1 good day does not a "consistently good-eater make"

repeat as necessary...

please...

This weekend found us and the emperor incarcarted once more.  Friday through Monday night was spent within the confines of Doernbecher, which I've come to equate with a hellishly expensive hotel for which you get a crackerbox of a room and substandard service.  Soo many mistakes were made with Max's care that to recount them all here would only serve to rile me and upset me once again.  And God help me, we are in the process of scheduling a surgery for next week to have the dreaded G-tube placed. 

It has become clear that Max is going to require it to ensure he's getting all the fluids he needs.  Dehydration in even the smallest amount equals "life-threatening" for Max and he require more fluids than the average healthy child, but lacks the ability to ingest it all by mouth.  I've settled myself that this in no way equates to a failure on our part.  It is simply a result of his unfortunate anatomy and health.  We've tried our absolute best, but according to his nephrologist, it was inevitable given Max's condition.

In the end, I think this will be easier on him, will cause him less stress and ultimately will cause us less worry because we can ensure he is receiving adequate amounts without having to fight with him to take it all by mouth.  It should not take an hour to feed him the equivalent of 2 oz., yet unfortunately many times it does. 

He was admitted again because the urine culture taken by Dr. Hudson, did indeed show the same nasty resilient bacteria growing within him and the infectious disease doctors recommended IV antibiotic therapy for 2 weeks, rather than the 2 days of the last bout.  This required that a PIC line be placed so that Max could come home and have us infuse him with the antibiotics, rather than making him and us stay up at the hospital for the entire stretch.

So now he has a line in his little arm that can stay there for quite a while, perhaps even up to 6 months, through which we can treat him should the inevitable infections occur in the future, which they more than likely, will.  This is simply a fact of life with a renal baby and especially so with Max's urinary tract anatomy.

We talked about the possibility of placing a tube when we were in the hospital but had planned to wait to see how Max's labs were today and then again on Monday before we made a decision.  However, after getting him home and struggling to get enough fluids in him, whether it was formula or water, we quickly came to the conclusion that waiting until Monday to talk was just postponing what needs to be done.  So, I contacted his nephrologist and she said she would begin setting things in motion today.  I am, at this very moment, waiting for a call from her to find out how Max's labs from today look and to discuss further the plan for next week. 

When he was admitted his levels were way up, higher than they were when he left the NICU and through discussion with the nephrologist we all realized that this may have something to do with the change we made to the volume of his feeds in order to combat the reflux.  I had no idea it would be so detrimental to him, but it was.  After having him on IV fluids for 24 hours, his creatinine came down from 3.2 to 3.0 and his BUN from 57 to 43.  Upon admissions, his creatinine was 3.3 and his BUN was 62.  He had never had a BUN over 35, even at birth and in the NICU, so this was significant.  His nephrologist was talking dialysis until we came to the conclusion that the elevated levels may have been due to the change in his feeds.

I can only hope that this is the case because there was the possibility that the bacteria had caused a hit to his kidneys that could be irreversible.

Time will tell.  Hopefully his labs today will show some more improvement..  Please let them show improvement...

Please...

thank you Max...

I don't want to jinx it, but I think I may have found baby feeding nirvana in the form of Dr. Brown's preemie nipples and bottle.  Today is Moose's one day off this week.  We utilized it this morning to make a babies R us run to purchase every low flow nipple known to man and a boppy travel swing, in which the emperor now resides, resting comfortably.  That swing was the first thing we've purchased ourselves for the emperor and I am quite pleased with its purchase as of now.  I wanted the travel swing for its portability and size.  You can bet the next time I sense a hospital stay coming on that swing will get packed up into the volvo.

The bottle/nipple was put to the test at the last feed and I did not need to count off Max's sucks and pull it away from him.  His burps were tiny little sounds of air, instead of great explosive blasts which have the tendency to cause him to start crying.  We'll see how that continues for the rest of the day.

I must also say that I am in love with the sling I purchased for the first pregnancy and never got to use.  It is a hotsling and the emperor really loves it.  I also have a maya wrap sling, which I am less enamored with.  Perhaps as he grows larger and gets older, I will come to love that one.  But the hotsling is amazing for now.  I brought it with us on the shopping excursion and when he started fussing, out came the sling and a quiet, peaceful emperor was the result.  We were able to stop in at bestbuy and check out computers, software and the like with no fuss.

I still don't know for sure if the move to half-time is approved, but Kim assures me she'll know by Monday.  So, I could very well be in for some work beginning this week.  I am not entirely sure how I feel about it.  In some ways, I think it will be good for me to be out of the house for 1 day and to be able to work the rest from home.  However, with work comes stress and god knows I have enough stress in my life as it is.  At least my job is such that I have been working in the position for so long that it is like second nature to me.  And the issue of Max's insurance coverage will no longer be weighing on me.

I got the statement from the hospital for the emergency room visit and subsequent surgery.  Two days of time was valued at almost 11K.  I'm just waiting for the 4 day visit which followed two days after his release from the surgery.   

I finally also got my short term disability payoff.  That combined with my tax refund actually puts us ahead in terms of pay for the time I've been off.  I am somewhat peeved that the insurance company states that recovery from a c-section is the same amount of time as a normal vaginal delivery, but whatever...an almost 3K payout is better than nothing, I guess.

I just realized that I never did post what happened with regards to the green/yellow discharge issue.  It turns out it was nothing and did not even require us to go in.  Dr. Hudson said it was the bacitracin triple-antibiotic ointment, which is applied to his vesicostomy several times a day working its way through his system.  Intuitively, I had already wondered if that was the case, but was really just somewhat paranoid that we might have ended up in the hospital again.  I can almost guarantee if I had called the pediatrician instead of Dr. Hudson, we would have been up there.  Thank god I made the right decision on who to call first.

Kim mentioned to me that after dealing with the emperor and all his myriad issues, I will learn how not to freak out and she's right.  If there's one thing I've learned in my time with the emperor, it's that jumping to conclusions and worrying incessantly never works.  It's much better to approach everything with a sense of calm, rather than stress. 

I guess I can say thank you Max... you are already teaching your momma much-needed lessons on life.

dangling the carrot

I am awake at 6am and not crawling back into bed for much needed sleep because the emperor had a major vomit/spit-up attack in the 5am feeding.  There's nothing like puking up your entire bottle over the course of a feeding to wake you up, I guess.  I have found partially digested formula all over me, including in my underwear, somehow.  I am unsure as to exactly how that occurred.  I can only think it was because I was sitting cross-legged while feeding him on my lap.

Afterwards, I placed him in his new favorite place ---the bouncy chair and stepped outside for a minute to feel the fresh air on my face.  I looked in the window and saw him happily waving his arms around and was hit with the realization that he is my son.  It sounds odd that I can care for him on a daily basis and not be ultra aware that I am his momma, but I guess I don't always think about things on that level.

Of course, nothing says 'momma' like finding formula in your underwear.  Though, being sprayed with diahrrhea runs a very close second, especially when it happens on your 3rd day into a ridiculous hospital stay when all you have with you are the clothes you are currently wearing, you've been wearing them for 3 days straight and your friends are walking into the room right as the poop spray occurs. Yes, somehow I think that says 'momma', as well.

Sometimes I place him in his bouncy chair in order to run crazily around the house, attempting to pick up the mess, do the dishes, cook dinner or some other 'wifely' task that isn't exactly conducive to having him in the sling.  I try to tell myself that it is ok that I don't carry him in the sling every waking hour.  It is ok that he has some time where he entertains himself in his little chair.  But there are times where I feel guilty about that.

I've come to the realization that being a mother brings with it a new sense of guilt every single day.  I wonder if it gets better with more children.  I'm sure it probably does.  But for the time-being, I find myself wondering on a daily basis if I am doing something that could be detrimental to his development.  I manage to find new and interesting things to be worried about each and every day.

I wonder if this ever stops...

I am sure it doesn't.

In other news, I am back on caffeine.  I prided myself that I had managed to remain caffeine free throughout the first 8 weeks of mommahood.  However, I now credit Max's crazy two hour feeding schedule mixed with Moose being back at work with forcing me back on the caffeine wagon.  Even now that we are back to a 3 hour run, I am still attempting to catch up on sleep and find myself wandering around with a glazed look until I have a small amount of coffee.  At least, I am still only having a small amount and I only do it when I wake up in the morning.  I'm not using it every time I feel exhausted.  Of course, if I did that, I'd just have to have a permanent cup in my hand and I refuse to make caffeine that much of a crutch.

It looks like I may start back to work next week.  My director has to sign off on the plan, but I know they are desperately needing me and I think, even if she has misgivings about whether or not it will work (which I actually find ridiculous), the need for my knowledge and ability will outweigh anything else.  Admissions has begun and I have been responsible for coordinating that massive project, as well as dealing with all its technical aspects for the last 3 years.  They are freaking out without me there and they are only dealing with the small admissions run right now (approx. 250 applicants for 8 slots).  The big run is still to come in the two months or so (approx 600+ applicants for 24 slots).

I told them I would come back as soon as they made the decision to accept the plan.  Hopefully that's enough of a carrot to dangle...

We'll see...

deleriously deprived and awe-inspired

Somehow in my delerious, sleep-deprived state of the last couple days, amidst fighting with the emperor, who has made it very clear to me he does not wish to eat every two hours, that I might be able to inquire about the possibility of increasing the calorie amount of his feeds and allow him to get back to a 3 hour feeding schedule.

Yesterday, I did just that.  I spoke with the nephrology nutritionist who thought the idea was a perfect solution to my issues.  She worked with me to get the formula concetration such that he need only ingest 500ml per day, instead of the 600 that I absolutely could not get him to take.  This means he now needs to eat 62ml every 3 hours, and miracle of all miracles...he managed that in the last 24 hours with only minimal struggle on my part.

He seems to be able to take that amount without crying and screaming through each feeding.  So, I think the smaller feeds in combination with the baby zantac, have staved off the reflux problems.  The longer period between feedings allows him to get more sleep in between, meaning he's less cranky and I can get a little more sleep in between at night.

Though, I'm having a huge and I mean H U G E issue with bottles/nipples.  Is it too much to ask that there be some consistency between bottle brands when it comes to flow?  I mean, for fuck's sake, one brand's slow flow is another brand's level 4 nipple and I am having tremendous difficulty finding a nipple that Max can take without vomiting because he's getting too much, or falling asleep after struggling to get something out of the bottle for over an hour.

I'm on the 4th different brand of bottle and I've tried over 8 different types of nipples.  The closest one to not causing many issues is the Gerber NUK orthodontic, slow flow nipple.  However, finding that in a store is like looking for a needle in a haystack.  I was actually given a package when we were in the hospital last because he was being so fussy during his feedings.  He has since worn those two nipples out and yesterday, I found myself scouring the internet for them.  I finally found them and ended up paying 30 dollars for 3 packages and expedited shipping just to make sure I get them as quickly as possible.

However, even those aren't exactly what I would hope for in terms of his feedings.  I also ended up purchasing Dr. Brown's preemie nipples off the internet from a separate location to try those because the level 1 nipples absolutely drown him and the Dr. Brown bottles were recommended by his pediatrician, but I can't find the preemies in a store, go figure.

As it is right now, I'm struggling through each feeding using the playtex drop-ins slow-flow nipples and when I say struggle, I mean that I have to literally count off 10 sucks before I pull the bottle away, allow him to catch up and then try to get the bottle back in his mouth.  It's a huge pain in the ass, and I'm introducing huge amounts of air when I do that, but there is no other way at the present time.

Who knew it could be such difficult process?

Of course, as I am fighting with this, it never fails to occur to me that this would not be an issue if I could have breastfed him and then I am faced with that overwhelming feeling of disappointment and a sense of failure because I can no longer even pump.  Any milk I might have had has disappeared amidst the incredible stress of hospital stays and daily care.  There just wasn't enough time in the day to pump and care for my little time-consuming, special needs emperor.

The only thing I am no longer feeling like a failure about is that I have finally been able to switch him fully to cloth diapers like I originally wanted.  Up until last week, I could not get the cloth diaper to work, what with his vesicostomy and then catheters.  However, since his vesicostomy redo surgery, the site is much smaller and lower on his abdomen and the catheter has been removed.  So, I've been able to figure out how to work cloth diapers so that he's not immediately leaking onto whatever clothing he has on.  This makes me incredibly happy and gives me a ridiculous sense of self-satisfaction.

I mean...at least one thing is now going the way I intended it to.

There is one other that that is going well and that is just the fact that the emperor is the most adorable, lovable, sweet creature I have ever known.  Sometimes it breaks my heart to think of all the challenges he has ahead of him.  And then I just choose to believe this will strengthen him.  I happen to know from experience that dealing with a disease can make you incredibly strong, can give you a sense of self-awareness that you would never get had you not had to deal with the stress of a chronic condition.

He is a trooper.  There is no other way to describe it...  I am in awe of him, even at 2 months of age, I am in utter awe.

the center of our world

It turns out that I was freaking out a bit in my last post.  Since that day, things have gone somewhat better with the emperor and his feedings.  I am still forever stressed that he's not getting enough nutrition, or that his necessary medication isn't making it into him due to sporadic spit-up/vomit attacks.  However, he's eating relatively well and I feel calmer, in general.

Though, I am currently waiting for a call back from his pediatric urologist, the lovely and wonderful Dr. Hudson, because while changing the emperor's diaper this morning, I saw a thick green/yellowish discharge on his diaper and on his testicles, which had clearly come from his penis.  Of course, this freaked me out and I quickly took his temperature, which was normal and has remained so since that time.  I don't know about you, but when I see green/yellow anything, I think I N F E C T I O N.

After the last 4 day stint at the hospital, for which I was completely unprepared, I quickly packed a momma bag, just in case.  I refuse to spend days on end up there again without a change of clothes, toiletries, a book and my knitting.  That was a completely hellish experience, especially considering that Max was clinically well and all we seemed to be doing was waiting incredibly long periods of time in a hospital room for urine cultures, which take 24-48 hours for results, hours during which Max and I could have been at home waiting just as easily as in a hospital room costing thousands of dollars a day.

So, this time, should we end up admitted once more, I will be prepared in some small sense.  I mean, nothing truly prepares you for your infant being admitted to the hospital, but at least I will have something other than the damn TV to entertain me.  Being prepared in that way, makes me feel at least somewhat in control of the situation.

I am also prepared in the sense that you can be damn sure I will question a decision to admit.  I will request to be able to stay home until results are known, even if it means having a saline lock placed in him and coming home with it.  I feel capable of flushing it periodically.  I'll even go back up there daily for IV antibiotics, if that's what they decide, but damnit... I want to be home and Max wants to be home, as well.  His demeanor is vastly different at home than it is after days in the hospital.

It took over a week for him not to scream when I laid him down to change his diaper.  I can only assume this was a result of the fact that every time I laid him down it was so that someone could poke him and prod him while in the hospital.  He's now back to his normal self during diaper changes, thank god.

I also spoke with work about the possibility of coming back half-time, doing one 10 hour day in the office and working the remaining 10 from home.  Moose would arrange his one day off a week on his current project to be on Friday, so that he can care for the emperor.  This would solve our insurance issue, our money issue (to some extent) and the issue of childcare.  They seemed receptive to the idea at least for a period of 2-3 months while we evaluate whether or not I want to come back full time or want to stay at half-time.  However, my director needs to sign off on the idea... so, we'll see.

In other news, the emperor is developing a personality and is becoming fun to interact with.  His neck and back are growing stronger and his head is quite a bit more stable.  He can ride in the sling with his belly against mine, with only minimal head support.  He's also begun cooing and making noises other than a cry, piggy snort or scream.

Oh, and he prefers Coldplay and Howie Day as his musical choices, a man after my own heart.

Moose was reading The Happiest Baby on the Block and came home with the following quote:  "You will fall in love with a fat, balding, toothless stranger who poops his pants and can't speak a word of english."  Everytime I think of that line, I start laughing.  It's so true.  I am so in love with the emperor. 

He's the center of our world and we wouldn't have it any other way.... 

I'm wearing thin...

I am overwhelmed of late, overwhelmed with not only the care of an infant but of one with special needs.  In the last 2 weeks, I spent a total of 6 days in the hospital with Max, two of which were very necessary, four of which I felt as if we were being held hostage by the urine police. 

Additionally, I am struggling with what in the hell we are going to do when my FMLA runs out, which is about 4 weeks away.  I hadn't planned to go back to work.  However, Moose is working as a consultant without benefits right now and I'm the insurance provider through work.  Plus, Max's hospital bills are easily coming close to 100K at this point in time and we are 8 weeks into his life.  We can't truly afford to switch insurance plans (even if Moose were to get a job with benefits) when we met our out of pocket maximum by the 3rd day of his life.

Childcare is a huge issue when we are trying to find someone who could actually care for Max, which is a daunting task.  It's not like we can drop him off at a local Kindercare (and we wouldn't really want to), but still...

Then there's the whole fact that I don't think I can trust another human being, besides Moose, to care for Max.  His daily care, when fucked up, could very well be life-threatening to him.  What childcare provider is going to want to assume that liability?  I would venture to say there are not many.  And how could I place my infant's life in the hands of someone else when he is so fragile?

There's the possibility that Moose could stay home with Max, but I don't make enough to support us.  Moose probably could support us, but doesn't have the insurance.  Dwelling on it makes my head hurt and my insides churn.  This was all supposed to be different.  Moose wasn't supposed to be laid off a month prior to my delivery.  He was supposed to be the insurance provider...

But we all know that life doesn't go according to plan.

Of course, added to all of this is that I require medical care, as well.  I am, right now, putting off an MRI I am supposed to have to check on my MS because I don't have the time to think about myself and with Moose working, I don't really have anyone to watch Max long enough for me to go in and get one.

Overall, Max is doing well.  His levels continue to drop slowly, which means he is gaining some kidney function in his one kidney.  However, reflux reared its ugly head this week and feeding has become a huge issue.  I switched to a 2 hour feeding schedule along with baby zantac, which appeared to be working for Max for the first couple days and which is now presenting a huge issue.  Of course, I'm not getting any good sleep and I feel like the walking dead.  I'm working so hard to keep him away from a tube in his stomach because that's one solution.  That's one solution to ensure he's always getting the proper nutrition and to ensure his meds are getting in him.  As it is now, I am struggling through every feeding with him, stressed out that he's going to spit up formula which has been fortified with any number of medications and knowing there is no way for me to estimate what he didn't get when he spit up.

But somehow I view the tube as a failure, as if I am not momma enough to be able to care for him without this invasive procedure.  He's already been in surgery twice in his young life, the most recent of which was over the weekend of the 10th.  I don't want to have to put him through yet another surgery.

His doctors tell me that I need to be conscious of myself and that I'm not going to do anyone any good if I'm not getting proper rest and if I'm stressed through every feeding.  I know this to be true.

Perhaps today is just a difficult day because he was doing so well the last couple days.  Perhaps I shouldn't jump to the conclusion that the tube is imminent, based solely on a relatively short amount of time.  It is possible he's just not cooperating today and that things will get better again.

I can only hope that is the case...because I'm wearing thin.

in which I realize I am boring AND forever stained

Ok, so I have hit that point when I am beginning to wonder if I will ever have anything truly profound to write again.  I also realized today that I do not own a single item of clothing that fits me AND that does not have at least two stains on it.  And when I say stains, I do not mean little tiny things that only I can see.  I mean very large stains that are in very visible places.  Part of this is due to my absolutely massive breasts, which act like a shelf to catch every misplaced mouthful and I tend to lack any grace when it comes to eating lately.  Part of this is due to baby mess.  But yanno, that makes me a momma, right?

right...

Here's a conversation between Moose and myself last night:

Me:  I no longer have any idea what day it is.
Moose:  Why?
Me:  Because I'm not used to not working.
Moose:  Oh, you mean because you no longer have the structure of trying to make it through each day just to get to the weekend so that you don't have to work?
Me:  That's exactly it.
Moose:  And you are complaining, why?

Uh yeah.... was I complaining?  Perhaps I was.  Or perhaps it was just a statement on the fact that I require structure to figure out the day of the week.  I mean, seriously.  How does one keep track when every day is the same as the next?  The only difference is that daytime TV changes slightly on the weekends.

Thank god for the Emperor's various appointments on a weekly basis.  They keep me semi-aware of passing time.

Speaking of the Emperor, this week's labwork showed his levels are all coming down.  Two major numbers that we are watching were significantly lower.  I was speaking to his Renal nurse on the phone and when she told me the levels I wanted to jump through the phone line and kiss her.  I can't help but attribute this to myself and Moose, which is, of course, rather self-centered.  But : (cheese alert, cheese alert) love heals everything, right?

Actually, there is the possibility that his lone little 10% functioning kidney will pick up function over the first 2-3 months and it appears that it might be doing just that.  I'm going to knock on wood right now, because I am superstitious that way.

Knock Knock Knock

on Wood.

He also ripped out his nasal feeding tube last Friday and clairvoyant parents that we are, we decided to leave it out, knowing that he would be able to take all of his feeds by mouth, which he has done. Is it that we actually knew it?  Or is it that we somehow realized that we may have been giving up a little too early during a feed, thinking he couldn't take it all, when he really could have if we'd only had a little bit of faith in him.

I believe it is the latter, to be honest.  I also believe the doctors instilled that belief in us to begin with by telling us he would need a stomach tube in order to get all the nutrition he needed.  We eventually asked to hold off on that surgery and thank god we did, since he's now functioning without any tubes at all and seems quite happy and about it.

With that, I will leave you with pictures to worship: