So much to do, so little time!

Anxiety on the receding level means action on the mommy level. Grief is still there, depression is lurking behind (in a shadow, obviously) and anxiety still has me grinding teeth and thinking stupid thoughts while missing other thoughts of greater value, but the energy to do the things of family living is returning to our family life. Luckily, I still don't have a job, though it seems possible in the future. I keep telling friends I cannot fathom how I ever had a full-time, high-intensity job AND cared for kids and home and did all that therapy for Hannah, lived with a depressed and slow moving husband (in secret he may have been speedy, I am still not sure) and...!!!...then started on therapy for me, then spousal suicide and then more therapy for Claire, then me...then arrgghhh...then I remember that I was propped up with oxycodone from November 2010 to March 2013. And then propelled by PTSD, grief, sobriety and the need to eventually get better, then ... .... .... PRESTO! I now operate at roughly 65% and climbing of who I used to be before I married a depressed! lying! manipulative! wrongly made! sort of beautiful in a flawed but beautiful manly and deeply fucked up manly way kind of man and had children with him and eventually had all my own previous flaws and insecurities meet up with special needs! Depression of self plus spouse! Life threatened babies! Death of a parent (and beloved dog)! Life in a CAPITAL L Sense, plus regular life and fell the fuck apart. Boom. Did I mention BOOM!? So now, I figure 65% operational skills is not bad, considering. People say you need a year for grief, you need a year to get equilibrium in recovery, and obviously you need a year plus for PTSD due to its earth shattering and ass kicking nature. So sixteen months since spousal death, this is not bad, not bad at all. Except ALL. Kinda bad still, honestly, but not AS bad as before. A win!

We live to fight the good fight, and smile a little today. Knowing there are more smiles tomorrow and beyond.

In the last two weeks I have spent 40 hours or so pulling weeds, been social repeatedly on as many as four days in a row, volunteered at church, co-parented other peoples' kids as well as my own, gone to continued therapy, sorted the detritus of about the last two plus years in my homey mess and recycled or tossed quite a lot of it, and been validated for how I have cared for my daughter with a metabolic disorder and CP by people in the know who say I have done well by reducing PT and just living. I have read books to my kids and encouraged them. I have loved myself, if not fully, at least I have tried, and told myself it is OK to gain weight while I am in triple recovery, and I bought clothes for me in this size, to reconfirm my affirmation. Firm is a word that partly fits, except for when I jiggle a lot. I have prayed and meditated, though not always with feelings of peace. I have felt optimism, pessimism but less so, hope, despair (natch) but then, hope some more, belief I can truly make my journals of turmoil into a book that might help others recover from trauma and despair, doubt, and, ultimately, belief, again. We have been to the zoo, swimming lessons, the lawn mower repair shop, book club, the store (too many times to count reliably) and I almost set up the computer again to receive pix so I can catch up on holiday and event posts.

Crap, I am pooped. But also, I am having some extra coffee so I can keep going.

Back to bracing basics

Hannah must have just stretched or something and her wrist is kinking up a bit. We braced for so very long, and when, over the last year, and after the last brace had such fatigued fabric that it couldn't hold the stay in the palm of her hand anymore, we stopped bracing. Her OT said when her wrist didn't flex and drop her hand, as was not happening much last summer, she would do just as well without it so it wouldn't impair her volitional movements.  Happily, we stopped bracing. Suddenly Hannah recently noticed she couldn't hold a paper down with her affected hand while writing with lefty and she wanted to spend more time at OT.  We went in this week to get new ideas and I had thoughts of a new brace, and came home with two, one to help hold her hand down during school work and the other to provide a better grip on swings and playground equipment and the like. Now of course she doesn't want to wear either one, so we are back to that nasty place of trying to create a commitment to therapy after taking a break. This is not my favorite place, as it brings up all my issues of wanting to encourage her to build skills and strength and confidence and lay down neural pathways for the future, all conflicting with my desire not to ever communicate to her that she is anything other than wonderful, perfect, not broken, and not in need of fixing. This is something I will never feel I really have down.

However, in other Hannah news, communication skills are really on an upswing.  Han has fully embraced and adopted the family practice of making old songs new again, changing the lyrics to songs of interest and renown to fit the topic in one's mind.  Now "I just wanna see you ... I just wanna see you-oo, see you be brave" becomes "I just wanna see you, I just wanna see you-oo, see you be ... FART!"

Bracing.

Pop, pop, pop music!

So, what is getting me through, these days? Pop music! Everybody talk about, as in . . . and so I continue to miss Adam Ant, derailed by mental illness, but at least we now have Bruno Mars. M, anybody? I am all about inspiration these days, as I still battle the depression, the anxiety, the PTSD, recovery from addiction, death of my spouse, blah-de-blah endless blah and yuck and yet I am hanging on by embracing the beautiful, the divine, the brave, the innocence, the happy.

Right now my happy music is Brave and Happy.  Thank you pop music, just for being you.  And courtesy of Hope over at Grace in Small Things, I am adding on Mariachi music today and I will let you know how that goes (probably with horns).

If the people who live in my house will stop being ill or getting head lice or both (thank you grade school in all your hat sharing, scarf swapping, up close and personal glory) then I will return to blogging my way through the blues.  Right now I am charged with keeping up our spirits without spreading illness or despair. Those of you who know young children will correctly guess that this involves a lot of craft supplies and clean up, so you know I am otherwise occupied.

Whoever you are who Googles MCADD and lands here, please contact me if you need to talk about it.  We still have it and still find it to be the least of our worries, actually.

Your child was diagnosed with MCADD but will live a full life, with care

When we got the confirmation of my daughter's MCADD diagnosis, we had an answer for the crisis she had gone through, but I was terrified of being able to keep her alive. Five years out, she is indeed alive, and MCADD was not a death sentence. A butt-kicking experience, but doable.

Most children will be diagnosed through the expanded newborn screening, done shortly after birth through the heel stick blood tests. The nurses who have practiced for years often refer to the test as the PKU test, since for years that was the main illness diagnosed by newborn screening. Now, most states have expanded their newborn screening for metabolic disorders, and MCADD is about as common as PKU, and the second most common genetic metabolic disorder.  Loads of kids are diagnosed years after their births, when a younger sibling comes up positive on the newborn screening and then all other kids in the family get tested, and the family learns they have been successfully living with MCADD for years.  Regardless of how you learn about it, being told your child may die from a regular average every day cold, is indeed terrifying. The scariest day is when the parent goes to the internet to learn about the new presence in their lives, and they find websites describing the tragic stories of children dying when the condition was unknown. Armed with the knowledge that as long as your child never goes into a serious low blood sugar state, she will live, you pick up the pieces and move on, fear in your heart.

My daughter's stroke and cerebral palsy were caused by the MCADD factor, but are certainly not a common outcome for MCADD.  Hannah was not a gifted nurser, and her blood sugar went down slowly after her birth, so that 2 1/2 days after her delivery she experienced a metabolic crisis.  If we had a normal delivery she would probably have died and people might have called it SIDS, but since she was born by Cesarean section, we were still in the hospital.  Nurses charted her low temperature and took her from my room, her blood glucose was measured, they tried to feed her, and measured her blood glucose again, and again, and eventually charted "glucose IV stat" but it was not given for another 20+ minutes.  She became fully hypotonic, with absolutely no muscle tone, and experienced a metabolic crisis.  Doctors were baffled by her condition, gave antibiotics and monitored her closely, and about six days after she was born, we were given the MCADD results. At the time, no one expected there to be lasting complications, and the stroke was not diagnosed.  I had enough to worry about, being told that a few hours delay in feeding could kill her and that fever and vomiting might be cause for a hospital admission to avoid a hasty death. We came home without her, brought her home a couple weeks later, and I pumped breast milk for the next 18 months, since she never was an adept nurser.  I was terrified, I wondered if I should quit my job to stay home with her or try to get a nanny rather that putting her in day care, and I wondered how I could keep her alive if a world class medical facility nearly couldn't.  Three times I have taken her to the pediatric ER for testing and a glucose IV and three times she started keeping food down while there, recovered, and has never had to be admitted to a hospital for her MCADD condition.  Now that she is bigger, fasting is less risky, provided she doesn't fast for long or have other illness of a significant nature.  Day care was fine, in fact, given her CP, it was a huge part of her successful development to date.

If I could tell parents of kids with MCADD anything, it would be - you are good enough to do this. You really, really are, so don't waste any energy with fear and self doubt - just be mindful and do your best.  If you get here because you are in a similar situation, please email me for support. If you struggle with your fears of being adequate, get help.  If you are trying to be supermom, don't hurt yourself to do it.

I don't want to blame my meltdown on my daughter, but instead on how I reacted to her condition - but having a daily fear like this contributed in a big way to self medicating myself into a pain pill addiction that could have robbed my daughter of her mother altogether. Not cool! Not good parenting! I hope that other parents are smarter than I was, and don't let self defeating beliefs, the depression and anxiety that can come with family illnesses be part of why you sink under the weight of what is on your plate.  I wish I could go back and tell myself that indeed I was good enough to care for this child, that I was up to the task. History has proved that I was, so far, yet I didn't invest appropriately in my own health and well being and I very nearly blew it.  Having other family issues come along means I can no longer cushion the blows with pain meds and anxiety drugs, so now I must do it all sober, which is both harder and easier, and now I need not engage in further beating myself up for daily acts that affirm my negative beliefs. But I wish I had forgiven myself sooner and in a less gut wrenching fashion.  So my message to other parents who have similar burdens to carry, take care of you, so you can take care of the kids.  You deserve to be proud of what you do to serve your kids of every flavor, and to be good to yourself.

posting my way through anxiety without mind numbing drugs - bite me, MCADD

Argghh, just a simple little cold/flu, the ubiquitous second week of the school year bug in all its minor chord glory, is here to rattle my cage in my new single mom state. I have decided that Hannah ate enough, is large enough, that the fact that she threw up does not mean we need to race off to the Children's Hospital in the middle of the night, getting a blood draw, IV and having her catheterized to check all relevant levels of stuff that matters in the world of metabolic disorders.

This is one of those places where my late husband was in some ways helpful, in that he didn't get so wound up with worry and count approximate food vs. vomit ratios, and yet, I always knew that if we separated I couldn't count on him to get Hannah to the hospital should she actually need to go, and I could lose her to his lack of worry.  And still I hated having to worry so hard about her since I had to worry for the both of us.  The three times I have taken her in to the hospital with vomiting and illness were all times where her test results showed she was just beginning to experience a metabolic process that could indeed be serious and ultimately fatal should she not get her glucose into a normal range.  I know at those times I did exactly right to take her in, and get a glucose IV that would load her up and keep her going until her appetite returned as the virus ran its course. But what about the times we  just rode it out and treated her like a normal child who has a brief illness? Am I risking her life when I don't take her in?  I know from the patient education we have received that she doesn't always need intervention and the best person to gauge that is her caregiver but I don't really trust myself to get it right, even though history has proven I do. And so anxiety kicks my butt, every single time her little regular virus with a high fever comes calling.  Every. Single. Time.

Last night I kept her in my too large bed, felt the heat waves coming off her body, and gave her sips of flat Sprite, apple juice, and water in between hurling into my stock pot that I kept at the foot of my bed. But it always seemed that every sign showed she was not in distress beyond expected levels for vomiting and fever, and if I could get her to keep high calorie fluids down by morning we could make it through.  And we did.  I imagine she will not go to school tomorrow either, and hope we both get more sleep tonight, and today I have one more example to tell my PTSD addled, anxiety riddled mind that I actually am up to the job of mothering this child. And that may sound more credible tomorrow.

Time. Marching on. Thank all that is holy.

By golly, is that the time?  Time to sit down and consume all my remaining outlandishly overpriced and calorically overdense foods before reentry into reality tomorrow morning?  Yes, it is time, apparently, since I sat down to blog with a crusty roll (less crusty than a few days ago) the last wad of pâté (I am so hoping Blogger can read pâté as pâté and not pate because, ooooh, ICK!) small slices of dilled Havarti, half a cheese danish and a chocolate caramel nut thingie (name of which escapes me but this goody will NOT escape me).  And an eggnog with rum, natch.  Sadly, this year I couldn't even keep up with my previously set standards for eggnog consumption because this year I was too busy to drink.  Yes, strange but true, we haven't restocked our eggnog from Costco for three weeks, and that is not like us.  Over the past few weeks I have countless times found myself failing to urinate when the urge occurred, only to realize that hours have passed before I finally decided I could pull that off.  Now you may hate me for this, and I do apologize, but I lost four pounds in December.  Before you throw something heavy at my post, do remember I am actually overweight, and fair is fair - someone has to lose pounds in any social circle because the number of pounds compounded between any group of people is a constant, shifting back and forth between the folk according to a fairly complex mathematical statement that if I revealed, you'd have to kill me, so my lips are sealed.  Will you feel better when I tell you that not one person set foot in my house over the holiday season?  Not one?  Not my sister, my niece, my aging parents, my bestie, my other lesser but still beloved friends, not even a neighbor (they left their shit on the doorstep and ran).   So I have to eat the food now, before the break ends, because no one else did.  I don't think people meant to ignore us, I think I only invited people who were unavailable, or so I like to think.  My bestie was in Puerto Rico, my aging parents are too decrepit to climb three stairs to my front door and so prefer we gather as a family at my sister's house, and everyone knows people with kids don't actually have friends. 

So what did we do from that point about three weeks ago until now, when I finally did three loads of laundry and put it away in the same 36 hour span rather than allowing it to mound on the window seat amongst the toys and handmade, glitter saturated Christmas decorations (glitter, as you may know, is Satan's dandruff, and remember the Satan / Santa conundrum, then add laundry and I think you'll see what I mean).   Well there was the shopping, and the wrapping, and the sickness, and the illness, and the wrapping, and the shopping, and the unwellness which delayed the shopping and the wrapping.  Anyway, the aging parents decided to go for broke and check into a nursing home and a hospital simultaneously two days after we had a child with a serious illness which requires the maintaining of a constant normal blood sugar barf her way through the night, Christmas night (bringing our percentage of children who barfed on Christmas to a respectable 50% of the four children in the household).  If it were me, and I were three years old, I'd be pretty upset to find vomit in my hair and my naked parents running around rapidly doing laundry and making me bathe in the middle of the night, but she handled it with all the grace a three year old can muster when she hears "good job, honey, you got it in the bucket!!" 

We did have fun.  We did have lovely gifts, some loud and some not, and some that brought great joy to their new owners.   We fully and finally realized just how much work my dear departed dog was doing to keep the floors clean - having now noticed that the rate of increased mopping is causing the kitchen floor tiles to buckle and rise up (the sort of uprising which leads to an all out revolution, eventually.  I know other parts of the house are planning insurgencies and I am turning a blind eye to the rebels, like many a colonialist before me).

The de rigueur photo post is coming . . . the ghosts of Christmas past, present, and future are coming . . . and possibly so will I when you tell me this whole rigmarole going on repeat is at least nearly one year away. 

They say it's your birthday . . . you're gonna have a good time!

My baby left babyhood.  Those of you who find me sentimental, well, overly sentimental, should perhaps skip this post.  I am going to wax sentimental, and I won't likely wane.  May I introduce my daughter, Hannah Rose?  We've been working on saying "pleased to make your acquaintance" and formally shaking hands (mostly because it is a nice OT type maneuver to get that hand to turn thumb up) but also because it is fun.  I remember when Claire had just been born and I asked Lord Honey if he had been practicing saying "and have you met my daughter, Claire?" in his mind, in anticipation of introducing her to someone.  He was baffled that I might practice such a thing, but I was excited.  I wanted to say "my daughter" far and wide and frequently.  I liked that daughter so much I wanted a second child and hoped mightily to get another daughter.  And fortune smiled on me, and I got this daughter.

 

Have you met my daughter, Hannah? Born on the eighth day of the eighth month of the eighth year, and under a lucky star.  As much as we could say we were unlucky that she had this annoying metabolic disorder, and more unlucky still to have had a metabolic crisis and a stroke in her first two days of life, we were lucky that Claire's lucky and unlucky c-section birth set in motion a need to have another c-section, and that having had Hannah delivered by c-section meant she was still at the hospital when her temperature dropped and her blood sugar tested low and after feeding didn't work she was eventually given a glucose IV (coulda been faster, like oh, say, STAT, the way it was written in her chart, but still) and that administration of glucose put an end to more damage occurring then and there.  So the luck and the unluck combine, the yin and the yang, the peanut butter and the jelly, and you still get a lovely girl, a lucky one, my daughter.

Some say she is lucky to have me, but I think I am luckier still to have her.  Go back and look at that first picture here.  Go on, I'll wait.  She is airborne.  She is brave and bold and funny and strong and beautiful and wicked smart.  And best of all, she is mine.  She says "I got you, Mommy! I got you!"  I got her.

She worships her sister, and who wouldn't.  Claire is so sparkly she competes with the sun.  Really, she does.

Look at that muscle tone!

Admire the hand placement.

Even at a birthday party where three-year-olds get amped up on Costco cake and become increasingly irrational, who wouldn't smile with a daughter like this one? Costs of renting a bounce house facility for a private party - more than some say is appropriate for a toddler.  Seeing her airborne?  Priceless.

Day three and counting

House date (I hate star dates, space bores me silly, except in Galaxy Quest): January 25, 2011

Today is day three of Hannah's third illness in two and a half weeks.  We started a few weeks ago with the delightful virus with a gastro bonus feature, had five days of normal eating and living, then Hannah's first bout with strep throat, probably courtesy of big sister who gets strep if someone talks about it, and after six days on antibiotics she got sick AGAIN.  Like God, she was supposed to rest on the seventh day but maybe because she can't read yet, she did not get the memo.  This would be your basic streaming nose and eyes, coughing (OK, hacking), high fever kind of virus.  Bonus feature add on: hands, lips, and nose turning blue when she either is cold or feels cold despite actually being 105 degrees.  Lest you think I am a crappy mother, I will tell you I asked Metabolics about the blue hands the first time it happened, when she was not actually even sick, and they sent me to Neurology, who said it was not CP related since it hit more than her affected side and so it must be metabolic, who again denied coverage.  My regular old garden variety pediatrician says it is vascular and inexplicable and not to fret.  A win for the GP!  Inexplicable!  Woo-hoo! But I digress . . . The strep was sort of anticlimactic, Hannah had a fever but never considered reducing her food, she was too busy catching up from the previous weekend.  Strep was small potatoes in her mind.  We were concerned she could get sick again without having even finished the pink stuff but a check yesterday says no UTI, no ear infection, just a suspected bone chilling, lung shattering, neck baking, snot making virus.  On the upside, the only body fluid currently distributed about my face and shirt are all snot or spit/snot related.  Hannah is napping right now, and just coughed so hard she said "Owie!" in her sleep, which is cute but distressing.  So far, in order to get her to consume enough calories to fuel this fever I have used the following: Polycose added to milk or in juice (a blend of secret not sweet sugars that have both quick and longer acting molecules to add calories) which is new to us, I have served almost all of her most favorite foods (many of which elicited no response at all, including pot stickers) I have squirted syringes of liquid in her mouth while sleeping as well as inserted bottles of milk until she remembers she doesn't want it, I gave her home-made buttercream frosting (hardly painful for me at all) and tonight I will try The Soup of Healing and the Rice of Togetherness (egg drop soup from my favorite Chinese place, which I swear really does have healing properties, and we need the rice of togetherness because if Lord Honey fails once more to understand my dosing instructions about Hannah and fever reducing medicines this family will have a reduction in force, effective immediately).  I just remembered marshmallows, and that I could perhaps offer her two big fat ones right before bed so I could feel I could safely sleep though the night.  I might make some brownies and frost them with buttercream frosting.  For lunch I made tea sandwiches (she wolfed them down the last time I made them for a party) and she managed to eat one third of the triangle which was 1/4 of a full sized sandwich minus crusts.  Success!  But I will please Claire with my tea sandwich efforts, and that is worth something. 

So a colleague in my office emailed me to ask how Hannah was and I gave her the update.  She wrote back how the coughing could make a parent feel so helpless.  I told her how empowered I felt when I got the child to eat nearly 1/12th of a sandwich.  She thought it sounded like I'd have Hannah mended soon.  I pondered whether I knew anything at all about any of this.  I decided I felt more like a fat old Idaho salmon, trying to get upstream to do my duty but not having a fucking clue how to work fish ladders when I don't have hands or feet. 

After trying to draw you out of your shells I had planned to be bitingly funny, poignant, witty, maybe even worth forwarding.  Oops!  Someone is calling "Mooooommmmyyyyy" so I must fly.

Edited: updating with the news that she can now cough enough to lose her lunch.  Lovely!

She's better, we're better, wouldn't you like to be better too?

So Hannah did in fact need to go to the hospital Sunday evening when she got up from a nap, turned purple with cold, then cooked up a 104 degree temp in the blink of an eye, and I knew that dehydration needed to be beaten.  Only two little results on a big broad metabolic panel showed anything funky going on, which would be stopped by the dextrose IV solution we were given.  I was sort of concerned by the size of the IV bag, and that if we had to wait to absorb all of that then I had not brought enough changes of clothing with me.  Ultimately they had us fluff up with dextrose/saline, using maybe a tenth of the bag, and the ER sent us away to follow up with the metabolic clinic the next day, which upon seeing Hannah seemed frankly surprised I was concerned, pronounced her as healthy as a person with MCADD and raging diarrhea could be, gave no answer whatsoever as to why the child sometimes turns purple and sent us packing.  Back at home we changed clothes a lot and tested the retention capacity of size 4 Kirkland diapers (poor when challenged by power pooping)  I have resumed my role as forensic scatologist looking for anything remotely turdlike in the diapers of disaster so we could at least tell ourselves the er, um, end?, was in sight.  It was.  A lot.  We saw a lot of that tiny behind, the laundry room, and diaper Genie.  And I spent some time wondering why diarrhea is spelled that way: doesn't the extra "r" seem excessive? Is that the point? It is meant to be a run-on word?

Today Hannah made a big turnaround and begged to go to school, so I took her in midday and she spent the evening cheerfully being herself with extra verve - I think she is pleased to again be capable of knocking her big sister down (she lost only 1 pound of her 25.5).  I am rewarding myself with an early bed and a new book.  For you - I hope for peace and an absence of runny poo.

It's four o' clock and all is well enough to go to bed for three hours

People, what are you dreaming about? Send some this way, will you? I've been up all night so far, dozing holding Hannah, and now that I feel she has enough blood sugar to get her through until she wakes, of course I am so awake I need a blog and a snack. I don't feel entirely comfortable taking a sleep aid in case the human vomit comet fires up the engines. It's funny how every time Hannah has any risk factors for an MCADD metabolic crisis all thoughts of the ass face of stroke or CP or cloudy indistinct brain damage all fly right out of my head and I am paralyzed with fear that I won't guess correctly and Hannah will expire because I didn't take her to the ER. However, the two times I've been to the ER in the middle of the night she did stop puking by 2:00 a.m. but we were held hostage until at least 6:00 only to get sent home. Once they utterly failed to follow the emergency protocol outlined in her emergency letter (written by the genetic metabolic docs at that very hospital) and the second time they only failed to follow about 30% of the protocol. Each time I felt I may have jumped the gun, that if I'd waited two hours I'd see that she would start to keep fluids down on her own if given in small doses, and as long as I kept at her she'd be fine and not spend one more night as hospital baby but instead just as baby down for an evening but well cuddled in the arms of Mama. And yet the smaller she is, the shorter period of time she can safely fast so things only get better for us with the passage of time. But now I don't have breast milk to give her, not that the hospital wanted me to last time because "milk is not easily digestible." Last time we were told we could go home when she could keep down Pedialyte, which tastes like ass (purple ass, but still ass) and I gave folks a lecture about how it was unreasonable to expect that a child who doesn't like the taste of ass should be asked to consume it after vomiting her guts out and that breast milk was actually made for her and not by Monsanto and was more digestible than anything else available to her. I'm pretty sure that got me an "uncooperative wacko mom" note in the file but I did actually later lodge a complaint and request for additional training after the nurse who discharged us advised me to give my daughter nothing but apple juice for at least 36 hours. I had reminded her of my daughter's specific diagnosis and how diarrhea could be as devastating as vomiting for her risk of hypoglycemia and she said even breast milk was just a really bad idea for anyone who had suffered from vomiting. When I talked to the on call genetics doc the next day he wisely (I thought) told me that a physician he trained under said "no human condition is improved by hunger." I've begged the docs we see to give me greater guidance about how to know Hannah's sugar is dangerously low, and are they sure I shouldn't test her sugars, and all of that and what they keep sticking to is how she looks/acts/presents when other indications are she may be low. Once they said she could go as low as about half her normal intake for a while but not for too long (isn't that nicely specific) and they tell me to keep cake decorating gel on hand to squish inside her cheek if I think we are in danger and need time to transport to get her an IV. Didn't I tell you this disorder was strange? So after one barf before dinner, a happy perky child running about later, three changes of bed linens and two for my shirt/bra, I just sat in the nursery chair with her nestled happily on me on the giganto extra large boppy on my lap, and we dozed on and off and had sips of apple juice and Gatorade and she kept telling me off for trying to sing the wrong songs or telling her to sleep. She has ten ounces of liquids containing sugar on board and hasn't hurled for more than two hours. My neck and back are screaming in pain but she is now snoring peacefully, back in a clean crib and smelling only faintly of vomit, and I have hung my hat entirely on how she kept reaching about to pat my cheek, forcefully insisted I sing the Hannah songs only and pulling back to look me in the eye in the dim glow of the night light over the diaper pail (that makes it sound more romantic, right? Like moonlight on a river but somehow more fundamental) with BOTH hands on my cheeks and smiled delightedly at getting to go to sleep on Mommy over and over and over.  I'll keep you posted, please send positive thoughts of clean laundry and a dearth of extra bodily fluids.

The yinyanginess of bittersweetyness

My little mind is all a jumble. We had the joy and excitement of Hannah's second birthday, which marks a major milestone not only in her transition from baby to toddler but also in that she has not been hospitalized for an MCADD related illness since her release from the hospital after her birth. We have made two nighttime rushes to the pediatric ER, but were held captive only a few hours and turned away. I'm proud! I'm successful! I don't suck! We've also now had the two year anniversary of her metabolic crash, a date which I believe marks the fatal drop of oxygen that bought us the CP of which we are so very, very fond. I spent that day, last week, hiding it from the world but I felt myself counting down the hours to the time two years ago when they charted she had signs of hypoglycemia, the time I know they did the first blood draw, tried to give her formula, drew the next blood for testing, and then waiting 45 more minutes to test again and place the glucose IV that saved her life. And where was I? In and out of the nursery between bouts of vomiting and diarrhea, but still, trusting in the nurses to pull it all together. We didn't get the MCADD diagnosis for days and there would be no way for the docs to know and anticipate that waiting on that glucose level would be catastrophic because of her MCADD, but still, in the textbooks, they say you always treat hypoglycemia in a newborn. Always. I wonder and I ask why, and I kick myself a bit and feel really angry with the universe because I actually love nurses and don't really want to blame them, since I actually credit them for getting people well. I know they waited for the nurse who is the best at newborn IVs. I wish they had given me second best on a faster timeline. I hate that Hannah has to battle to walk, to learn to use her hand, will have her good hand immobilized so we can motivate her weak one, will maybe need botox or surgeries, and mostly that instead of just enjoying her, every moment is a moment I should be teaching and encouraging her use of her body, even as I know my family has far fewer burdens than many others carry. I'm still pissed off.

And then here is Hannah, in all her Hannah-ish glory, who is making enormous progress in all her therapies and charming all her therapists and as far as I can tell having a pretty good time. She just learned to say her name as "Hnana" with her sweet girlish voice. She'll tap her chest and say it quietly, and smile at me, if I touch my own and say "Mama." She is so obviously delighted with her increasing mobility and strength. She runs! Somewhat crookedly and drunkard like, but she is moving quickly. I love to see her walk over to the window seat, and casually lift one foot halfway, standing as if balancing is no chore and her feet can just sit around looking dainty and girlish while she gets a toy or shares a laugh with her sister. She'll move into the group of kids closer to her age at day care in two weeks, possibly skipping the not quite twos and head for her age group, who passed her by when she didn't walk on schedule. Her therapists all agree on this for her cognitive and social development, and to show her a model of her movements on kids who are on target, and I do agree, except the part of me that says she is small, and light, and tippy, and will maybe have setbacks with growth spurts and therapies that will have her coming to school in casts or getting uncomfortable treatments. And then the day care administrator showed me the kids who she'd be with, who will be her kindergarten cohort, and I watched a girl maybe 8 months older than Hannah fly up the curved ladder of a jungle gym and felt my heart sink. She will do that, but not with her hand as it is now, not yet.

So I'm all mixed up. I'm up as can be and I'm down in the depths. Every time I sit with her and spend a moment on working on her opening and closing her hand, I see how far she's come. She likes to feed me blueberries with righty. I have to lick a squashed piece of fruit out of a questionably clean hand but she is learning to turn her hand up, so I eat the berries and it pleases her. I'm up, and light as air, and Hannah is a joy forever, and I'm dark, and guilty, and not even as guilty as I am mad that she carries these burdens. What should be a normal little MRI and a doubled up dental procedure for her will be a day of general anesthesia for her on Friday (I waited this long so I could keep her at home the day before and not admit her as a precaution to emptying her system of food before a sedative - Hannah will never have easy peasy outpatient surgery) and it literally took something like thirty phone calls and emails to get it scheduled only to have it all nearly dashed when no one wanted to be responsible to move her from one floor of a pediatric hospital to another. But today I heard that the dental suite scheduler pulled some kind of miracle together and I'll be bringing her sweet rolls so my baby doesn't go under twice just because "that isn't the way it's done, ma'am." An office administrator angel in disguise. Perhaps she'll let me sit by her and knit while the dental work gets done.

I wish my camera could do justice to the loveliness of this girl. She has learned so much about how to communicate, I think she doesn't talk much because she doesn't need to, but today she said car and moon on our evening walk. But better still, she can fairly talk with her eyes, her beautiful eyes and joyful smile. When she is awake.






This childhood of my darlings passes so quickly, too quickly. Bittersweet is the right description "more sweet than bitter, bitter than sweet." I want her bigger and stronger and yet to stay so perfectly sized to be held in my arms with her head tucked under my chin. It must cause mothers physical pain when their grown children can't fold up onto them anymore. I don't know how I'll stand it except taking comfort that I got them along in the world that far even when some of the battles were harder fought than was really fair.

Haiku Friday an ode to fever

Grape Ibuprofen
smells awful but works wonders
bless its purple soul

And by the way, I never thought of CP for six hours

Six hours and a kick in the ass later. . .

I’m on my way to Hannah’s regular six month metabolic clinic appointment to check her status with MCADD and feeling all my general PTSD feelings on the way. The route I drive to get to Primary Children’s Medical Center is the same route I would drive to see Claire in the hospital, right next to PCMC when she was born, and again to see Hannah when she was born, and each time I have driven one of the girls up in a panic that they were ill and fading fast, such as when Claire got RSV at five months of age, or the two times Hannah’s vomiting has caused me concern enough to take her in for a blood work up in the middle of the night. I felt the tears come up but the Xanax kept them at bay. We went in to clinic and were seen only about thirty minutes behind schedule which is not bad, considering their track record. I had to report that Hannah had a fever this morning, and that I didn’t know why, but that she was 102 so I had given her Ibuprofen and brought her in anyway although this was a regular check and not a sick child visit. Dr. You-know-who was concerned and started amping me up immediately, because Hannah has once had an unexplained UTI. The regular pediatrician had wanted me to get a test called VCUG which is an ultrasound to check for abnormalities that allow reflux back up the urethra or some such thing. I explained I’d been reluctant to spend any time at PCMC during the really sick kid season, since the UTI could have been a flukey thing and I didn’t want her exposed to any bonus bugs that the hospital is full of. While we were there, the doc checked her temp and found it had spiked to 103.5 even with Ibu on board so he sort of panicked and wanted her to have an intramuscular shot of high dose antibiotics while we waited for a test to show whether she did indeed have another UTI or that this fever was just from a regular ol’ virus, but still one that could cause a metabolic crisis. After much ballyhoo, we went at the doc’s direction to the outpatient pharmacy to get a dose of antibiotics which we were to bring back to the clinic to have a nurse administer. Now, the genetics docs are mostly theoretical folk, and although they see their patients when they are sick, they lack some basic skills about regular kinds of testing and treatment, and just the way things are done generally. So down at the pharmacy, they didn’t want to even fill the thing because I would need home health nurse to administer it. I explained that I don’t have a home health kind of child, that Hannah doesn’t see a nurse at home in that fashion. Back to the drawing board. Eventually I got it filled (about one extra hour) had my poor infant catheterized in the ER because the lab doesn’t catheterize, and finally headed back to clinic. By now metabolics is done seeing patients, my doctor is gone, and everyone wants me to know my doc has been wandering around with a sheaf of papers looking for me so he could give me my referrals and see that we’d had our shot. I kindly offer up the vials only to be told no nurse on duty in this clinic can reconstitute the drugs, and that must be done by inpatient pharmacy. So we wait. We are not inpatient. We are not a priority. An hour passes. For someone to mix two vials, warm it up, fill a syringe, and bring it back. Meanwhile our doc comes back, gives me his personal number, tells me Hannah is making ketones so we know she is not eating enough to handle this high a fever, and sends me out with strict instructions about ibu / acetaminophen dosages and how to call him directly if she seems lethargic. She is of course passed out in my arms, having been poked, prodded, had a tube up her hoo-ha and a generally shitty day. He tells me if he can find my drugs he will give us the shot himself. I feel some concern that he may not be good at it. And we wait. Eventually a nice nurse returns, who is possibly the official doctor you-know-who wrangler and she takes us in an empty room and gives Hannah the shot. Hannah screams bloody fucking murder at the indignity of it all but passed right back out on me as this whole episode had now occurred thought the timing of normal naps. So then, because I was unsure I could get her in the house and back down for a nap, I went home, but left her sleeping in the nice cool car, and went in. Got my laptop, wrote in the still idling car in my driveway (environment be damned, I have a baby to make rest) and then went for another drive so I at least know she has had one hour of uninterrupted sleep in the relative peace and quiet of her Cheerio encrusted car seat. Soon I will take her in and dose her for fevers and try to tempt her with any food known to Hannah kind, including Natural Cheetos, and everything the nutritionists oppose, because I just want her eating. And not going to PCMC in the middle of the night. Call me selfish, call me irresponsible, but a mom’s gotta do what a mom’s gotta do.

Fuck you universe. I’ll get you back, you asswipe.

The clothing changes around here would make you think we are high fashion models

You may insert platitudes here about how pride goeth before a smackdown. I didn't hit publish on my last post because I wanted to put in some updates about Claire's general sassiness and Hannah's well being. Harumph!

I have now had been puked on, shat on, and had snot smeared on multiple body parts, and made one middle of the night trip to the pediatric ER. Good times!

Hannah wouldn't eat when we did our stealth milk maneuver on Saturday night, wherein we sneak up on the sleeping baby, poke a bottle of milk in her mouth to tide her over for the night, and slip away. Instead she coughed, then hurled, then wailed. We changed everyone's clothing and tried to settle in, got more barf, changed again, then again, then I headed to the hospital when it appeared she could keep nothing down. After a few hours and some time on the glucose IV, her labs looked good so we were allowed to leave, and I got the two of us in bed at 7:00 a.m. to rest a few hours. The discharge nurse told me not to feed her for 36 hours and to stick to apple juice for better digestibility. Hannah also had an "angry" ear infection in both ears so she went on antibiotics, and between the stomach virus, the juice, and the bug killing in her gut, she developed some super powerful pooping skills, and managed to go through three pairs of pants and the walker seat in the first half of the day alone. We kept the washer running just about full time. I talked to the metabolics doc on call who agreed with me, that Hannah should be given food if she wanted it, and certainly breast milk, and he spouted some common sense: no human condition is improved by starvation. Aha! Once the virus caught up with me last night, it was finally clear to me just why Hannah didn't want to eat or drink much of anything. Puking sucks! But, we muddled through and gave Hannah small amounts of whatever she would take, only some of which came back up, so we avoided going back to the ER. She seemed to sleep better on me, so I slept in the rocking chair in her room so I could 1) give her comfort 2) keep her more upright (bonus: easier to roll her over when she puked if she was right on me, and then the puke could flow in an orderly fashion downward) and 3) I would be more likely to know if her condition suddenly worsened to the signs of metabolic crisis that would leave me scrambling. And, she didn't want me to put her down. I actually used the toilet holding her, because she and Lord Honey were both sleeping and strangely, it was easier to pee without getting her off me. Perhaps the powers that be have made Hannah smaller so she is easier to carry until she is up on her own. Claire didn't get the bug until yesterday, when she "throwed up on her pretty purple dress" and got sent home. We had to put up with some extra redheaded grouchiness until the ibuprofen kicked in, and Lord Honey and I spent some time wondering just what we had done to deserve all the extra body fluids. Claire, bless her wee heart, can hurl in a bucket! The last stomach bug she had found her without any control or powers of prediction, but she is now advanced enough to have never once fouled a parent or piece of furniture. Say it loud, I'm proud! No one has actually hurled today, although we still have some chills and queasiness here and there. We learned some MCADD lessons. Learned that even at 18 months of age, spilled breast milk still doesn't stain a shirt but breast milk that has been forcibly ejected does stain, even a new Gymboree shirt. We learned that Hannah's regular and specialty docs are very invested in her care and always take my calls. We learned Oxi-clean really can remove green poopiness. We learned Pedialyte tastes like ass. We learned that if the binky is missing, we should check my bra. We learned the prescription ear drops may be worthwhile. We learned much, and we are tired.

Nuts, I say

I have to thank you all, once again, for assisting me in sorting out my madness. Thinking about what I'll write helps me enormously in the let's get it all sorted out process.

Wee Hannah has been in her crib and out of our bedroom now for eight nights, all nights in which she lived until the morning, so I am delighted. Four of those nights she slept from the time we gave her the midnight milk snack until I woke her or she woke on her own at the time we get up. So I am now officially delighted but slightly wiggy, especially when I walk past her old bassinet and see it empty, which is unnerving. At Hannah's current weight, she can now go eight hours of fasting before she should burn up all her glycogen and have a metabolic crisis. But I am paralyzed by fear: what if I sleep in? What if she is having a growth spurt and has extra caloric needs? What if a fever comes upon her and that amps her rate up but the grogginess keeps her from waking herself up as she normally would if hungry?

Imagine you are Keanu Reeves in Speed, and Dennis Hopper narrates your situation and says WHAT DO YOU DO?? WHAT DO YOU DO?? You have a sleeping baby with a weird metabolic disorder. She is sleeping. You think she should eat. What do you do? This has weighed on my mind since we brought her home from the hospital and started setting the alarm for three hour feedings. She is at the day care. A new person is in the nursery today. She doesn't understand the MCADD diagnosis. What do you do? And it colors my view of the future. She goes to school having refused to eat much because she has to do her hair. She skips lunch because that is what skinny girls do. The dinner I make disappoints her. What do you do? You want her to sleep all night without dying so you pump milk right before bed and have the bottle handy, because breast milk can sit out for a while and be served room temp when the baby squawks. Now the nutritionists and docs want her on more calories because her growth has bottomed out. What do you do?? Do you take away the food source she is familiar with and hope she takes to liver and onions?

I am quite certain I have often said "don't borrow trouble" to my friends and family when they want to worry themselves into a state. I've said it to myself. I've said it many times since we had Hannah. I'm not very good at following this advice.

I've now been pumping milk for her for seventeen months. I loved it when she still breastfed but she is a smart cookie and knew bottles were easier. Devastated by her choice, I nonetheless continued to make milk. I am winding down and planning to stop fairly soon, but I am loaded with guilt over my choice to stop. Loads of breast milk is not enough for a person of her age, so she is now anemic and needs supplements. Iron based formula would help out here, but if I have a personal belief that Nestle scientists can't possibly do a better job than me in making Hannah designed milk, should I really switch her over when I have months worth of milk stored in my my extra large freezer? And yet I am so excited to throw away the last remaining milk stained nursing bras, the hands free pumping bras, and get that time back in my days. I'm tired of how much it hurts to have largish sensitive body parts pulled on for hours a day. I'm ready to be done. I feel no small amount of joy in believing I've suffered the pumping to give her something Enfamil can't. And a normally developing breastfed baby would at this age be just at the low end of normal in not falling in love with food, and many toddlers are said to exist on two noodles and a kiss. We are not alone in this, we just also have CP kicking up the burn rate and MCADD telling us to have a bottle of milk handy for whenever we might slip some in. I can't really have a waffle and two strips of bacon on the bedside table for midnight snack. Well, I could, but that would be for me.

Or, perhaps, nuts.

Ma-ma-ma-milestone!! I'd do the happy dance but I can't stop crying.

She finally pulled herself up to standing. Lord Honey saw it first and failed to mention it to me. Men are rather odd.

Here is the lead up.



The approach.




She shoots, she scores.



I had suspected it would happen any day as she'd suddenly gone through the kind of exponential change that had her sitting up in her wee bassinet, and therefore finally kicked out of our bedroom and into her own, and refusing to sit down, and rolling about in her big girl crib like a wild monkey just because she could, and we've been working on the parts of getting up for months.

Then I saw it today during our PT session and burst with pride. My little baby! All grown up! Suddenly she seems so mature, pulling up and hamming for the camera then expecting to be shown the picture for her approval.



I want her to walk, and to walk soon, but more so I want her to walk well. We are seeing two different PTs who recommend different things and I've focused more on the one who we met first, and how he wants Hannah working at basic skills and building up strength and balance. The other therapist, he of the pithy sayings such as "we all find our support" wanted her on walking toys (she said no), in a walker (she said fuck no) and cruising the furniture (she says OK to that). Her primary PT, he who visits my house, sometimes to comic effect, instead wants me climbing her up the stairs so she learns weight shifting and balance and bears weight on her weaker side in ways that mimic walking, and he believes in selectively splinting her elbow so she can't revert to her scrunched up arm pattern and pull herself out of balance. I went with his methods more, on instinct, and also on him saying look, she will walk late anyway so instead of pushing walking just push for the basics because her walk will look better if she shifts her weight well. After our session on Tuesday as he was readying to go he said it was one of the most fun therapy sessions he's ever done, and he's done quite a few. I haven't been able to talk about it because I can't control my emotions. Mike has always said Hannah would walk, he just couldn't say when or how steadily, but he is absolutely delighted with her progress and her many tricky skills, like cruising both directions (including to her weak side) and the way she holds her trunk and moves her shoulder and chest, and he says she'll be walking soon.

Every time I walk into the day care and find her standing at the table I think I'll just burst with pride and joy, It used to be that Hannah would bee sitting about while her peers romp about her and now here she is right in the thick if the action, leaning up against a table or shelf and looking so much more normal. 'Scuse me, I need Kleenex. Normal posting will resume soon.

News: small babies don't weigh a lot

This earth shattering news brought to you courtesy of Hannah's metabolic clinic visit this week. And the other big shocker: they want her to eat more protein and well, more food generally. Because they want her to weigh more. Wow! The dietitian will contact me with information about "power packing" Hannah's food to give her more calories without more mass. She actually told me when her daughter was too small she fed her avocado sandwiches on bread laced with oil. I'll sign up for that one anyway, with a side of cheese.

Now that I've got that out of the way . . . once again I went to a doctor's appointment that lasted nearly four hours, and felt wholly inadequate for all but the time spent in the waiting area where I stood Hannah up to play with toys and helped some non English speaking folks find the toys for their child. I was adequate then.

I am trying to feel grateful that Hannah's doctor would call as soon as the labs came back to tell me how her carnitine levels were, and discuss dietary issues from the diet analysis, but instead I just feel grumpy. I wonder if he calls because he is worried about me being a lawyer and that I blame the other hospital for letting Hannah go so hypoglycemic to begin with so now he is worried about dealing with me. Anyway, it is never good when the doctor calls right back. He did rightly observe, though, that Hannah is very beautiful.

I am working on gratefulness, I am.

She's not disabled, we're just visiting

As we are on our way in, a mother carries her baby out on her hip. Baby has a cast on her leg. Baby is nonplussed, mom is on a cell phone. I am not nonplussed, I am shattered. On the way out, a salesman is on his way in with an adult sized prosthetic leg. I check my legs just to make sure I've got two to go.

Today my baby had her evaluation for services at a Shriners Hospital. Hemiplegia as a form of cerebral palsy is considered pre-orthopedic because if left untreated, spasticity in muscles will create an orthopedic condition that requires surgery, so my daughter can get services there even though she doesn't actually need their higher end stuff. We get to skip things like the conversation I overheard at the nurses desk "we'll do the muscle biopsy before the skin." Our physical therapist had warned me the visit would last about four hours, so at least I was prepared for that, but I cried six times today before I even arrived, then lost count of how many times I came to tears with the nurse, the care coordinator, the orthopedic surgeon and the neurologist. I start each new interview with "I am a cryer. You can write that down if you like." It will be true the next visit also, and maybe the one after that. The staff were delightful and remarkably calm. Something about being funded privately really changes how they handle patient time and interaction. The facility is new and clean and quieter by far than the other children's hospital. I did enjoy the way the young patients interact. Hannah got a wave from a young man flying by in an assisting device I don't know the name of yet, I can see how the wide open atrium room for PT will be great for us when we teach her to run or to ride on a toy, teach her things the rest of our kids can learn in the living room or backyard.

I realize these nearly four months we've been working on this have been an easing into the world of getting ability out of disability. Hannah has not stood out in her nursery as anything but super cute and smart, because only now at almost twelve months are her peer groups jumping up to creeping and walking really making her look different and stationary. I ponder how it will feel when she sits in the middle of a room of walking babies. Its a damn good thing she has those advanced verbal skills. Maybe I should get that informercial product "Teach Your Baby to Read" so the toddlers will rely on her for advocacy for snacktime rights and notepassing during naptime. I know she'll use her powers for good.

If you are lucky enough to have a free pediatric orthopedic hospital in your city when you need one, well, fantastic! It's that whole "if you need one" part you have to watch out for. I knew I needed to be there, and I am glad I went, but let's just own up here - I was not prepared for the vision of the wheelchair chop shop, where devices are modified to meet the needs of each patient. This adds up to a lot of spare parts. I wasn't prepared to see the kids in the beautiful, clean and well lit therapy room and see my future. Furious is not too strong a word for how I feel. Terrified that I will fail to to get the job done in every way that matters for my daughter. Horrified that all the "special" time I spend with her will be the drives to Shriners, the Early Intervention meetings, the therapy sessions, the coaxing her to wear a brace or do the next move or try the next step. Sorrow, for the good health she doesn't have. Grateful to have all this help and furious we need it.

Our prognosis is still good, in fact great, but it was again emphasized to me that not all kids like this crawl, and not all kids like this get out of the brace she will certainly benefit from when learning to walk. Um, this part was new. Every time folks tell me how great she is, I think that she'll be one of those people you hear about who have CP but you almost can't tell. I didn't think the brace would stay. And it might not. And they'll custom make it after casting her leg and we won't be using the equivalent of a 6-12 month old baby shoe. Hooray! And oh fuck I need air. It was the best of times, it was the worst of times.

Her corn storage was full

Six hours at the pediatric ER in the middle of the night to find out her corn storage was full. Now, that is not what the doctor said, but they were so damn unreliable that I had to make my own diagnosis.

A few years ago my sister and I realized by observing that since all vomit contains corn, vomiting must be caused when one's corn storage gets to capacity. Hannah's corn storage got full about 1:00 a.m. on Saturday night. We woke to the sound of the gak (something a little like the call of the wild, not a sound you can easily ignore) and of course I panicked out the outset, since MCADD kids are supposed to be seen at a hospital upon any vomiting or diarrhea since they can decompensate very quickly when blood sugar goes out of whack. I knew she had eaten a meal between 7:30 and 8:30 p.m., not all of which came out as corn, so I knew we had some leeway, but as soon as we changed her to a fresh set of jams and bedclothes we got round two. I knew then we were going to the ER, and Lord Honey would stay behind with the other kidlets. A small barf number three convinced me to leave (and might have made me go through a red light or two when I had stopped and identified that no one else was on the road). Of course I cried when Hannah wasn't looking and drove on up, trying not to think of sad songs. As directed, I approached the triage nurse with the emergency letter I'd been given after Hannah was discharged last August and explained what MCADD was and said we should be seen immediately. They got that part right and had us in a triage room quickly, where Hannah flirted wanly with everyone, especially those who called her pale. A quick blood sugar check gave us an 84 which they said was great and they had us go back to the waiting room to wait to an exam room. Now, we didn't wait a long time because frankly it was not as busy as they often are but we got taken back to a room after 15 minutes or so.

A nurse said they would be calling the metabolic doc on call but first we could try Pedialyte and see if Hannah could keep it down. I said gosh, she hated it the one time I gave it to her, so if you want to do a trial of keeping food down let's use her actual food, breast milk, which I have lovingly pumped out of my body for the express purpose of nourishing her(!!!) rather than crappy tasting Gatorade lite. The nurse said well milk can be hard to digest but she understood why babies might not want Pedialyte and theirs wasn't even flavored. Now, was she dumb as a post or did she relay this info through four other people who garbled it, I don't know, but someone tells the doc (but not me) I have refused to let them give Hannah a glucose IV (which is in fact the reason I am there, since my understanding is that if she needs one nothing else will do) so after the baby takes an ounce and a half of milk, keeps it down, sleeps until a new glucose check requires a new blood draw by an inept tech who fails to draw enough to test, then she takes two more ounces of milk, two exams by the pediatric fellow, then the actual doc comes in and says "Well since you refused the IV we will need to get the labs before we call metabolics (!!!)" at which time my head exploded and was scraped off the ceiling tiles by an underpaid troll blah blah blah at which time I said, no, I refused PEDIALYTE and if the metabolic doc says an IV is needed then GIVE IT TO HER NOW, THREE HOURS AFTER WE CAME IN and if they tested her sugar and it was fine what was the deal? She said metabolics preferred her up at 120 not down at 84 which of course I would never know the expected numbers because they don't want me testing her because the sugars might give me false security when her metabolic cycle is really whacked out and she needs medical evaluation and labs done. Despite having been told 84 was good, now 84 was not good enough, but they thought she'd be better now she was keeping tiny bits of milk down. So, I say, does my baby need IV glucose or not??? Well if she is keeping food down now, probably not but let's run the metabolic labs and get back to you.

The first nurse we saw was apparently leaving early and didn't want to get stuck with the paperwork for an infant IV blood draw because she told the tech that Shawna (the replacement) could do it after she glanced at her watch and tapped her motherfucking foot. So we waited for the new nurse to come on shift, get up to speed on Hannah, then call the IV team who were on another floor, but who, bless them, were better at sticking a baby but they get a fail on taping the baby arm to the immobilizing board as she now has a big red tape burn. They left the IV cath in her hand in case after the "special" labs were run they still wanted to do a glucose IV (remember, the IV is what I thought I came in for, four hours previously). They told me the labs could take a while then they'd talk to genetics on call and get back to me and it might be two hours, so I pumped and comforted Hannah and got her to sleep and passed out in a chair at an inappropriate angle for all of fifteen minutes until the results came back about 75 minutes after the test, and we were discharged as all her labs were normal.

So, what did I learn from all this? 1- I need to give more directions to the hospital staff, and just take charge. Even with all this education when it comes to my baby I believe I should be putting my trust in the folk who are in the know, but they blew it on three different points in how Hannah got care, even as described by the metabolics doc who also works there. 2- My instincts are not wrong. So, my instinct that she should go in was right, as at the time she was puking she made ketones but then, as soon as she could eat and hold down breast milk she really stabilized in every way. When I talked to the on call doc on Sunday afternoon he said if I had only called in he would have sent me in to the ER just based on her age and the vomiting, he would have preferred they had followed the emergency letter and done the glucose test, labs with an IV, and called him instead of dicking around for four hours, but the ketones tell him she was not great however she righted herself. 3- I love Hannah beyond words, dammit. 4- I look forward to not pumping anymore but if you try to tell me breast milk is indigestible I might gouge out your eye with my very flexible pump tubing and it won't be fast. Do not come between my baby and my fucking pumped milk. I am much, much meaner than I look when I am wailing in your exam room at two in the morning. 5- You remember a time when you cried until you sobbed and the sobbing wouldn't stop right away and every time you took a deep breath and it would catch in your chest from the spasms in your ribcage like a half sob? It is heartbreaking for a mom to see her baby do that. 6- I am only taking back some of the nice things I have said about nurses. 7- Sale on corn.

Tell it like it is

Medical records pull no punches. A careful read of Hannah's records reveals she is white. At various times her skin tone is described as pink, pale, slightly pale, and normal for ethnicity, depending on who wrote the note. A read of my medical records on the fateful day two of Hannah's life, the day she didn't eat enough, describes my breasts as large but with erect nipples. Oh, goody. Now everyone knows. My gas was politely described as "flatus" and they only used one adjective (green) to describe my emesis. If I can hurl far enough to startle a nurse, I think that I should at least get an honorable mention for distance and speed. In the past I have often been surprised to see notes in medical records that refer to topics entirely outside the scope of the exam: "patient denies pain." No, I don't deny the existence of pain when I claim not to have any. You didn't ask about my belief system, so why should I spill the beans? Infant exams are similarly slanted: "patient regards raisin" doesn't actually means the baby looked at fruit, only that she could, and the difference between complete and incomplete fisting is not quite as racy as it sounds. When she was born Hannah had no clicks or clunks (just like a high quality used car)and the nurses uniformly believed that I had no barriers to learning about how to care for my baby (kindly glossing over the overnight IV morphine drip while my husband made me watch a leprechaun movie when I was too high to object and kept insisting that the pot of gold looked like a pizza). So why did it all go so wrongly?