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.

I dropped a bra size, I dropped a bra size!

You should read the subject line with a "neener neener" tone in your mind.

This may be one of those TMI posts for some, if so, just skip it.  I know CaryAnne will be proud of me, being an actual Weight Watchers employee and all, and everyone who loves me will just be pleased that if I can ever get ginormous to reduce to just plain big, well my neck and back will be a good deal happier.   Claire, who is skinny and bony and needs a good cushion, will likely disappointed because she likes me squashy, but there's a long way to go before I lose my cushiony qualities.

Talking with moms about our birth stories, our nursing or failure to nurse stories, our bodies post baby and all of that leave us with pretty much one conclusion: this shit is hard!  I've struggled with weight for a life time, had breasts since age 11, never knew what a training bra was, until my 13 year old friends got them, and generally wished for decades that I was less voluptuous.  I'd tell you about the time I nearly squashed a tata in the refrigerator door, but I don't know if all ya'll know me well enough to believe it.  That was when I was about 16.  When I was of a normal weight in college but well endowed, I ruined countless shirts not just by catching food but by setting them down on a dirty table or bar.  I had my babies late and much heavier, when my breasts had already begun their race to my lap.  Claire was so little at birth, she really lacked the muscle strength to nurse, so I pumped and she had an NG tube and every day, with the occupational therapists and lactation specialists, we practiced and practiced.  Long after I got her home, she finally got the hang of nursing without a breast shield, a certain Boppy at a certain angle, and someone, myself or a friend if one was nearby priming the nipple with drops of milk from a syringe of previously pumped milk.  We never got to full time nursing and I went back to work, having made sure my supply would always outstrip demand, I filled my sister's deep freeze and my own with bags of milk.  She nursed for nine months and gave up, I pumped for six more., and she had three more months of defrosted milk to tide her over.  My size dropped between nursing and the next pregnancy, as did my nipples themselves, so I expected it would happen the second time around.   Again, I got a hospital baby with an NG tube, pumped myself into a frenzy (no Katy, I was never that mother, I was the mother people took from) and again stockpiled milk while trying to teach a lazy baby to nurse, despite the relative ease of bottle feeding.  I lost thirty pounds in thirty days because of all the fun and illness right after Hannah's birth, and still the durned things got fluffier still.  This one quit nursing at four months, and because I felt guilt over Hannah's metabolic disorder and feeling she needed the best I could provide, I pumped until she was 18 months old.  I expected my nursies to shrink, again.  Nope.

I actually have an exercise bra in a cup size that shall remain nameless, since the letter is further through the alphabet than I thought possible for clothing sizes.  Meanwhile, my neck injury of 13 years ago has reared its ugly head, given the weight of the pump bottles, the nursing, the holding of 20+ pound people, the crawling on my hands and knees to help Hannah get crawling, and the fact that all lawyers/women/office workers tend to hold tension in their necks and shoulders.  I've taken a million pills, I went back to PT and got some new ideas, went back to Jazzercise (where I get a few of those backhanded compliments about how great I am at it, which I am sure come when it must surprise them to see a fat woman outdance them, and don't come from pure meanness) and although I haven't really cut calories as I should I have dropped a few pounds.

And blissfully, a bra size.  I nearly kissed the sales clerk who helped me today.  I bought two.  One cotton, one not.  I nearly boasted at a child's birthday party this evening but I managed to find some self control and shut my pie-hole.  But here I am, telling you!  The whole internet!  You couldn't call them tiny, but I am so pleased I'm going to now eat an entire Totino's pizza with extra cheese.  Heh-heh.

Motherhood, juxtapositonally speaking

My sister made a point to tell me Happy Day for Claire's birthday, and told me she always feels extra special on her kids' birthdays. I felt special but sort of bitchslapped too, so much so that I ended up crying at the bakery when I picked up Claire's fancy cake for the family party. I thought of how I'd brought home a cake from that bakery when Claire got home from the hospital, and how much bigger it was than her tiny wee head, and how addicted I became to that buttercream frosting, making her at least %25 butter for the next two months when I stayed home with her, trying to fatten her up.

It had already hit me some on Saturday, with her party coming up and me racing around doing party prep errands on a sunny spring day, high on my SECOND Starbucks Venti Caramel Macchiato, blaring Tom Petty in my minivan, and feeling the love. Jason had said something like "I wish I'd gotten this much when I was a kid" and I said yes you do, everyone should be so lucky to be as loved and cared for as my dear girl. It all came together in some weird "I won't forget this moment" sort of way, with the pleasure of giving her a great time and making her feel cherished and important, and the sun was shining and then came the juxtaposition of some of my old punk rock playing on the iPod, followed by Tom Petty with me screeching along with "oh baby don't it feel like heaven right now, don't it feel like something from a dream?" Yes! It is heaven! I get this lovely creature to spoil and fawn over and cradle in my arms, and then I remembered how I almost didn't get her at all. Once it hit me I couldn't let it go - how close I came to not getting to have heaven on earth. My doctors had no idea my baby was struggling, since I measured normally and the heartbeat was strong, but she is only alive because I asked for that extra test, just because I felt that I didn't feel enough movement. As soon as they slapped an ultrasound on me it was apparent the baby was not growing and needed to come out and be fed. When I asked how they could have just been willing to let me go home from the clinic that day, and what would have happened had I not sought extra testing, the doctor looked me straight in the eye and said "stillbirth."

I am normally a glass half full kind of gal. My glass has pretty well stayed on the full side except when it comes to motherhood. I should be able to just revel in the result, because the results I have are indeed astounding and glorious. Not for nothing did I make up a song like "Claire the Magnificent" to croon to her at night. Something about motherhood brings out the naked part of my soul. Any of you read the Narnia books as a child? When a character who has done wrong, really wrong, meets the Powers That Be and the all powerful Aslan rips through the extra bits right down to his soul, all naked and slippery? That is about how this motherhood gig goes. I am tooling along with just the joy, on a sunny day, in my minivan, and smack here comes the other side of it all, the fear and the worry and the oh-shit feelings. My people tell me how wonderful I am to have noticed and taken action, and saved the day for Claire, but it doesn't always look that way inside my head, through the PTSD. They tell me this too in relation to Hannah, that I noticed the signs of her CP before her doctors, before her father, and jumped on the therapy bandwagon at the first possible moment. I keep remembering how shocked I was that there was a problem for either of my kids, how inexplicable it all seemed, how close I came to not getting that first baby at all, let alone the second. I think sometimes how if I had not planned to breastfeed my second baby, despite all the motherfucking pumping and hassle with feeding Claire, in fact probably because how hard that all was I was determined to breastfeed baby number two and get it right, but if I had chosen to just formula feed, Hannah might not have CP at all, because she would never have dipped too low in calories learning how to nurse. Am I a good mother? Well, of course I am, but on the inside, I doubt, I wonder, and I feel guilty as hell. And then here comes that joy again, when I snuzzle them on the backs of their necks.

Twice this week total strangers asked me for advice about the big parts of motherhood, how to pick a day care and whether to use a day care for a medically fragile child. My name gets given out as an example of someone in the know. Fuckity, fuck, fuck I say! I don't know anything!! Of course I give advice but still, on the inside, I am full of self doubt. I keep wondering if I'll get caught faking.

Claire now has a new favorite song, because we played The Waiting for her on the way to the party. And now the poor girl at Mrs. Backer's bakery thinks I am insane since when I ask her to prepare a cake for us, I find myself telling her why I have to have a Mrs. Backer's cake on the actual birthday even though Claire would be happy with a Costco cake or even one of lesser quality, but I must have the buttercream icing that says "Claire came home" to me, and always will.

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.

We all find our support

One of the physical therapists we work with to address Hannah's cerebral palsy issues likes to say "we all find our support." He explains if he is near a wall you'll find him leaning on it. What he wants to tell me is not to be so close behind Hannah that it is easier to fall back against me than do her own work. Yes, he tells this to a woman with short arms, large breasts, and a small, tippy, wannabe toddler. We do all find our support. Mine starts with Z and ends in T and rhymes with Olof.

I spent some months trying not to go on an anti-depressant. Six months, actually, after Hannah's second set of issues became apparant. I was feeling like I didn't have PPD, but an acceptable level of stress and aggravation as would any forty something year old mother of two, one of whom came home from the hospital with a three hour expiration date. Who wouldn't cry? I didn't see the tears as depression, I saw them as a fairly normal reaction to an abnormal situation. I thought I was OK but sleep deprived. Then I watched as Hannah's little fist never unclenched and I knew something was lurking about. My husband and pediatrician did not want to jump to conclusions but I wanted answers and googled my way into a state of panic, then got my fears confirmed by professionals in the know and got started on supportive services to help Hannnah get her motor skills going.

After a few evals and visits I found I started each new discussion with "look, I am a crier so just know that now, make a note or whatever, and try not to notice or I cry some more. Let's talk about Hannah. Gulp." I couldn't get it under control to save myself. Every time I thought about right now I'd cry, thinking of where she wasn't on standard bell curves, and when I'd think of the future I'd cry to picture how Hannah's walk might look and whether she'll drag her foot, and how other kids will treat her, and the enormity of it all just kicks me in the gut.

I didn't want to use a powerful medication while I was still making milk, and my husband is distrustful of drug companies and would not be excited to see me reliant on medication. But, it seemed to me that my family needed me not to be so weepy. Hannah needed me not to cry at every damn therapy session, Claire needed me to not be so tense that every moment at home needed to be a therapy moment for Hannah. It wouldn't hurt Lord Honey to have me not be so unhappy, so I went with what seems to be the most favored option for breastfeeding mothers and took the plunge. And now, a month or so in, the reason to do this seems much clearer now, it was for me.

The world looks brighter. I still cry in therapy sessions sometimes, but not every time. I cried when the PT wanted to see her try a walker and nearly hit him when he asked me why I found it upsetting. Therapists often seem to forget that patients/parents might not have come to the fork in the road marked "acceptance." I still have something to wrestle with: I didn't want to be the brave little toaster who could. I didn't want to be the mother of a child with a disability. I'll be wrestling this demon for a while, I think, because I don't want Hannah to be disabled, and I don't want to define her that way. Using my super strong spidey sense powers of prediction, I think she'll end up being the child everyone is impressed by because she is smart and beautiful and happy, and she will be strong and probably even a brave little toaster. And it feels a little weird to say this out loud in writing, but she won't be the person with a disability who makes other people uncomfortable with icky evidence of ill health and need, so we'll coast on that, while other mothers of children with more severe needs are pitied or avoided. That is also strange. And someday, I will want to smack a stranger who makes a comment I won't like, and I will struggle with teaching my daughter to accept herself and also try to make herself stronger. The road ahead looks long and rocky, but better lit now with Zo' on board.

I am lucky to have this child, this sister, this family to care for even if I needed a little blue pill. When those eyes search mine I know it all over, I am lucky and fortune smiles on me. Wish he'd do the laundry, though. Let me cheer this blog up by showing you Hannah eating asparagus. Tomorrow we'll get back to less weighty topics, like asparagus pee.

Mad about the mouse

My feet may be wee bloody stumps but we are having a great vacation. As I type I am pumping milk for Hannah in a nicely air conditioned family bathroom whilst my children are minded by my best friend and my husband takes off on his third mission to Mars today. I will likely have some 'splaining to do when Lord Honey sees the bruise I got on my ass shimmying up onto this changing table to spend 20 pumping but there was no way I would spend any 20 minutes extra on my feet today so up I went. Hannah loves the undersea Nemo ride, Lord Honey loves space, and Claire loves her pink Minnie Mouse ears. More to come if I learn how to do pix on a Blackberry.

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.

Milk math

Douglas Adams said the Restaurant at the End of the Universe was powered by the mental energy of the diners doing math to pay their bills. I wish I knew what my mental energy was powering when I do milk math. Every night I lay me down, adding and subtracting ounces of milk relative to the number of hours that have passed since Hannah last ate, or might be expected to eat again. It goes something like this:

OK, she had 5 ounces at 5:30 but didn't finish the last 1 1/2 , then she was served part of a plastic thingie of peas and two TBSP of baby cereal with breast milk to mix at 7:30 and less than half was found on the child after the meal, but she ate really well at the beginning and didn't smoosh it out of her mouth until the end so she probably had 2/3 of the food that was consumed less the amount remaining in each of the three food dishes we used, but then I had a bite to make sure nothing was spoiled tasting so I have to account for that. Now she has had one more ounce and has been asleep for two hours and if I sneak three ounces of breast milk in by bottle while she is sleeping and I wait until 10:30 then she won't need food until probably2:30 but 3:00 a.m. is the maximum latest time to feed unless I count the solid foods which I can't really count because I can't quantify it but it makes her less hungry for milk certainly so if I wait and let her get hungrier will she eat more in the nighttime feeding so we can sleep longer before she wants to eat again at 5:30 a.m. or is that just caused by the stuffy nose? Should I use a decongestant? She's just so little and I hate to pollute her with wacky drugs not even the doctors believe in but a stuffy nose can impair her appetite and if she doesn't eat we could end up at the hospital and what time did she eat anyway, maybe I can squeeze in more milk now, OK but only half an ounce and does that push the time back for the longest she can go without food or is half an ounce too small to count anyway? Half an ounce is .5 ounces. When you round a number that ends in five, does it round up or down? Since breast milk is liquid gold can we round up when the number is in the middle or must I round down because MCAD babies need less fat and more carbs and so should I just be giving her formula or juice anyway? And I just pumped so I don't want to pump again soon so if she could sleep so could I but if she didn't have between four and five ounces then she hasn't hit her minimum feed and is three and a half like five, enough like five to go six hours or should we feed her sooner? Is this algebra or calculus? Have I spent enough mental energy on this instead of sleeping? What time is it anyway? How long have I been lying awake? Only a few minutes were spent on anything other than milk math, have I gone long enough that now I should take a sleeping pill so I know I get some sleep? How much Ambien lands in milk? If I take half an Ambien can I round it down and tell myself I didn't take any? Is it time to feed the baby again already? Who is that crying?

My vowel is wonky

Pretty much nothing cracks me up as much as when I misunderstand someone speaking to me. The level at which I won't understand you is directly proportional to the amount of sleep I didn't get. Recently, my husband offered to get me a glass eye, and of course, I accepted. Yesterday I explained to my best friend (not my breast friend, no!) that I couldn't meet her for lunch because my valve was wonky, meaning my breast pump couldn't pump, leaving me rather at loose ends and needing to run home to the big pump Ol' Reliable. She believed I said my vowel was wonky, and maybe it was. I once thought that my sister was insisting I should try schnapps because "It's good for you on Fridays" which I found baffling, until I found out she was telling me it was good for my arthritis. Even more baffling since I don't have arthritis. I will likely have arthritis by the time I stop using this damn breast pump though. Who knew that a moderately sized child could give one aching joints? Who knew a breast pump without a hands free attachment would create the dreaded "bottle elbow" pain? I think I once envisioned motherhood through a soft misty glow, seeing myself in a hazy Madonna and child sort of pose. I didn't know then that the filmy gauzy look I envisioned for myself was representative of the film of milk all over me, my pump, my pump parts, my baby, and every chair I sit in to feed my baby. The breast pump is still wonky, and I don't believe its good for you on Fridays. Or on Mondays.