One day Anni was twirling and singing one of her original compositions.
"It's my gift!" she declared.
Dizzy, she fell with spectacular gracelessness.
Laying on her back on the tile floor she began flapping her arms and legs
as if she were making a snow angel.
"Falling down is also a gift!" says she.

Thursday, August 25, 2005

eulogy

My dad called at 6:15 this morning to tell me that my Aunt Pat had died. A heart attack during a visit to Pennsylvania. I confess I did not know my Aunt Pat well growing up. I knew she was my mom's big sister, the smart one, the one to whom my mom always compared herself. I knew she was a librarian, and spoke with a gentle voice, and told stories to children. I knew she had three children herself, my cousins: Sabrina, who seemed destined for the stage somewhere as she swooped about our family meetings dramatically, Cliff, artistic and the quietest boy I had ever met, and Eric, the youngest who bubbled with energy and had a smile that begged to be splashed all over ads for peanut butter and cereal. I knew she used to live in Kansas City with my parents and her husband, big Cliff, before I was born, but had moved to Texas and made it her home for many years. Everything else about her was hidden in the secrets of the Adult World. And when I finally joined the Adult World myself, I never thought to ask, finally, for the rest of her story. After all, there are so many questions to ask once you're old enough to finally think of asking them. And old enough to stop and listen to the answer. Aunt Pat on her second birthday When my first daughter, Annika was born, Aunt Pat sent me a thick book of Mother Goose rhymes, beautifully illustrated by Rosemary Wells. It was the kind of gift that matched perfectly my memory of my Aunt: bookish, aware of tradition, but slyly humorous. When Annika was a few years older, it became such a favorite that I had to put it away out of her reach. She kept trying to tear out her favorite pages and tuck them into her bed. Aunt Pat took time off to come to Chicago when Annika was at her very sickest as she waited for a liver transplant at the tender age of 12 months. Her sons, first Eric and then Cliff, had volunteered to donate a piece of liver to replace Annika's dying one. She had to sit with both Eric and Cliff as the doctors and social workers explained in stark terms the possible complications of donating. She was there with Cliff before they wheeled him off to the operating room. The last question they ask, and not for the first or even second time or third time, before putting donors under anesthesia is, "Are you absolutely sure you want to do this? Even if it kills you? You do know that you could die from this?" Cliff answered, "Yes," and his bravery is astonishing to me. But also amazingly brave was his mother, my Aunt Pat, who stood there with him. As a mother now, I know that the thought of losing a child is many times more painful than the thought of dying yourself. And yet she stood by Cliff, and told him how proud she was of him and his decision to save a dying baby that he had never even met before his trip to the hospital in Chicago. She was a strong and compassionate woman, who raised strong and compassionate children. During those days that we waited for the arrangements for the operation to be made, Aunt Pat spent most of her time in the hospital with Annika and my mom and me. The waiting was hard: Aunt Pat was not used to the waiting. She believed in being useful and productive in every waking minute, and our time spent waiting and watching Annika struggle was certainly neither. So she volunteered to do story times for the kids, but was told that the vetting process for volunteers at the hospital took many months. I'm sorry that the kids there didn't get a chance to hear her spin a tale in her soft and careful enunciation, and sorry, too, that I didn't get a chance to hear one of her stories as an adult. By the time Aunt Pat arrived in Chicago, Annika had reached the point in her illness that she needed me to hold her constantly. Even sleeping, if I tried to lay her in her crib, she would scream, eyes still closed but feeling the cold air that signalled that human contact had been broken. Jörg brought food to the room for me, and my showers became 45-second affairs rather than the warm-water escape therapy of the previous months. I could not stand to hear her scream. I was scared of her dying, but I was even more scared that she would die unhappy or hurting or not feeling the safety and security of loving arms. I was sleep-deprived and dreaded the necessity of showers and toilet breaks and anything that meant I had to remove Annika from my arms. But one day I handed Annika to my mom. As usual, Annika realized that the always available comfort of my breasts (she nursed often), was suddenly missing, and she started to cry. My mom began to rock Anni back and forth on her shoulder as she stood in the middle of the room. My Aunt Pat came over to them and stood right behind Annika, rocking in time with my mom, so that Annika was completely surrounded. Aunt Pat rubbed Anni's back and began singing her a song she had heard me sing Anni many times, Tell Me Why. Amazingly, Annika stopped crying. I left the room for the first time in weeks feeling relaxed. When I came back 25 minutes later, Aunt Pat and my mom were still standing and rocking together with Annika snuggled in between them. Aunt Pat was still singing, and my mom had joined in. It was a beautiful and touching scene. I wish I could have recorded that moment to show Anni, to show her how very much she was loved by this great Aunt that she never met again and now never will. I hope this eulogy will help her know someday. Aunt Pat was a beautiful woman, the sort of woman who knew how to give comfort, and which song fit the moment best. My Aunt Pat was generous with her love, and I am so sorry for the pain her children and husband and parents and sisters and grandchildren must be feeling right now. She lived a full life, raised three wonderful children, and touched the lives of countless others as the librarian who told eye-widening stories. The world is a lesser place without her gentle voice and smiling eyes. I hope her touch is carried on in the lives of her children and grandchildren, and perhaps even in my own child, who felt her loving touch at a time when she needed it most. Thank you and I love you, Aunt Pat. Goodbye.

Tuesday, August 23, 2005

Frankie, and yet more Frankie

Frankie is weaned!! I repeat, Frankie is weaned! Woohoo! Thanks to all who offered advice and support in this tricky endeavor. In the end I used the old "Hey! Look! Is that an airplane?" method of weaning. Friday morning when I went to get her out of the crib, she snuggled into my neck and murmured sleepily, "Nursie, peez." Resolute, despite the sweet, sweet smell of her soft baby hair and her impressive grasp of the "magic word," I asked her instead, "Frankie, would you like to feed the cat this morning?" Her head popped up off my shoulder. You bet your ass she would! She solemnly carried the cat bowl, all stinky with Hepburn's favorite food sprinkled generously with smashed thyroid pill, to Hepburn's usual breakfast spot, and then sat down beside the cat to stroke her fur and exclaim unintelligible words of encouragement to Hepburn as she ate. Hepburn, of course, really needed no encouragement, but was wise enough to simply ignore the enthusiastic child bobbing beside her since there was Seafood Grille Delight being served. By the time Hepburn finished, Frankie's egg was cooked and the heavenly scones from Great Harvest were on the table. Nursing was forgotten. Frankie likes to nurse 3 times a day: first thing in the morning, before naptime, and before bedtime. I had made it through the first demand, and decided the best way to avoid the second was with a change of locale. So we went to one of the local pools with a fantastic children's area, and the girls played themselves dizzy. Frankie fell asleep in the car on the way home, and danger zone #2 was averted. At bedtime I got really shameless. I sat down in our usual nursing chair, a rocker, in front of the computer. But instead of turning on soothing music and attaching Frankie to my breast while checking my email, I loaded up a video of Dora the Explorer singing La Lechusa. We watched that 4 or 5 times, and then I laid her down in her crib. So easy! Honestly, though, I think she was ready for it. Certainly I got much more fight from her everytime I tried any little trick with her before. Still, she brings it up with me occasionally. Just to be sure. Saturday morning when I went in to pick her up, she snuggled into my neck again with that sweet, sweet smelling soft baby hair. This time, though, she patted my breast through my t-shirt and asked me in her quiet morning voice, "Nursie gone?" And when, later in the morning, I accidentally pinched her finger in the linen closet door and then quickly grabbed her with an "Oh, no!" and an "I'm so sorry!", she was not above asking through her tears, just to be sure, "Nursie?" Luckily, running cold water over the squished finger numbed the pain even without the analgesic effect of breastfeeding. I'm still working on finding a good bedtime ritual for her to replace nursing, though. She's been having a little trouble going to sleep since stopping, although she doesn't complain about it. With Annika, who decided quite on her own at 19 months that she was done with breastfeeding, I sang "Miss Mary Mack" to her while rocking. It wouldn't have been my choice, but Annika made her wishes very clear (even though she wasn't saying a word at 19 months). Looking back and comparing the two girls, I realize that Anni's always been pretty decisive and unshakeable in her ideas. The new nursing-independent Frankie spent the weekend experiencing lots of firsts. On Saturday Annika and I made our usual Banana Chocolate-Chip Cinnamon Nut Muffins (recipe at the end of the preceding link). We usually make these when Frankie is asleep, but Annika was pretty sure that the new all-grown-up Frankie would enjoy getting in on the mess-making action. We put Frankie in charge of smashing the bananas with a potato masher. She climbed up on a chair at the counter, next to her sister. Every once in a while she would turn around and shout at no one in particular, "Look at me! I'm cooking!" Then she would turn back to her task, all seriousness. She chanted, "Cook...cook...cook," saying "cook" every time she smashed down in the gooey stuff. As you can see, Annika insists on wearing an apron and hat when she cooks. Clothes, not so much.
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A few new phrases have entered Frankie's repertoire: "I made a mess!" "Clean it up, mama." "Clean me up, mama...Peez." And a new one, which is patently insincere: "LET. ME. GO!" She says this when being carried, pushing against my chest with her arms. But after I put her down, she is back tugging on my jeans and raising up her arms within a minute or two. Ah, the power of words. Heady stuff. Frankie is walking that line between independence and complete, snuggly dependence right now, trying to figure out where she should be. She wants to feed herself, wash herself, brush her own teeth, wipe her own nose, throw away her own tissue, get her own drink, but always with me standing right there, mind you. "No! Let me do it!" is surely the phrase heard most often right now. When I put her down to sleep last night, she insisted on arranging her stuff around her just so. "Let me do it!" as she placed her pillow in the right spot and gathered her favorite toys to snuggle. Finally she settled down and I reached down, as usual, to rub her back a little before leaving. "No! Let me do it!" and she reached her own arm awkwardly around to her back, doing her best to give herself her own backrub. The fact that it wasn't quite working didn't discourage her one bit. Hey, there's been lots of stuff that has taken some practice to accomplish, right? I just said, "Night-night. I love you!" and closed the door, watching her bend her arm around in the most determined fashion, and trying not to laugh until I was out of earshot. Still, despite the newly discovered independence, Frankie is clearly not the adventurous daredevil that Annika is. We went to a mini-carnival on Sunday with a bouncy castle and one of those giant inflatable slides. Frankie thought the bouncy castle was some sort of torture device (Make the baby fall down! Over and over on that horrible, soft surface! Oh, the horror.) She didn't even enjoy the slide although I went down with her (And hauled her up it on my hip. I'm sweating just remembering how hard that was). At first I thought maybe it was her young age, but then I remembered Shelby, and her wild abandon on a similar slide, never mind the nasty liver-induced osteoporosis, and that was when she was only a few months older than Frankie is now. Jörg, trying out his Voice of Reason, pointed out that one daredevil per family is more than enough. Who has time for daredevilry when you're busy perfecting pronouns, anyway? Frankie already has the proper use of "I", "me", "you", "my", "mine", and "your." Can "he" and "she" be far behind? And she has already figured out that there can be a, ahem, certain disconnect between what she says and what she actually does. So, for instance, as her Daddy was calling her upstairs for her bath tonight, she sat at the table happily munching on cheese as she cheerfully shouted back to him, "I'm coming!" And then asked me for more cheese, please.

Wednesday, August 17, 2005

Lucky

Annika got to help me pack her own suitcase for her trip to the hospital. She reacted to this news like she had just summited a great big mountain called "Maturity." In other words, every book, every snuggly, every CD was weighed carefully before it went into the red rollcase. As we were approaching the end of the task, I asked her, "OK. Is there anything else you want to take along?" She leaned against the wall, crossed her arm over tummy, rested her other elbow in the palm of her hand, and tapped her finger on her chin as she murmured, "Hmmmm. Think, think, think...Oh, I know! I should bring along Hairy Joe!" "Hairy Joe? I have no idea what you are talking about. What in the world is 'Hairy Joe'?" I admit I was torn between thinking that asking for "Hairy Joe" at age 4 1/2 was either awfully cute or more than a tad creepy. "Mama. Hairy Joe! You know!" "I'm afraid I really don't, sweetie. Can you tell me more about Hairy Joe?" "It's just Hairy Joe! Uptown Girl!" "Ooooohhhhhh. Billy Joel." She gave me her best "whatever" look, and went on with her packing. Yes, my daughter is obsessed with perhaps the worst Billy Joel song, ever. But you haven't lived until you've heard a blonde moppet strapped into a Ford Taurus tsk tsk offkey at the top of her lungs that "She's been living in her white-bread world." Annika brought along her favorite hospital doll, Betsy. Betsy has endured a lot over the years in the interest of entertaining Annika during boring old hospital stays. Here she is, 18 months ago during a longish hospital haul (most of February to April). How Annika spends her time in the hospital (movie) * Jörg reports to me that Annika took her unpacking just as seriously as she took her packing. Her audience for this ceremony was her nurse, Donna. Reportedly, Annika amused Donna no end as she remembered things she had forgotten to pack and exclaimed, "Oh my goodness!" with her arms outstretched in the "Why me?" gesture. Donna is one of my favorite nurses, and not just because she evidently stayed in the room for quite some time giving ample appreciation for Annika's performance art. She is one of the older nurses on the floor, and she's been on the GI and liver transplant floor since its creation a decade or so ago. This is somewhat unusual, as the floor does have a fairly high turnover rate. The nursing team there assigns transplant patients a "primary nurse," who cares for that child every day she works. This is great practice for improving care for all patients, but especially for kids, who really appreciate the stability that seeing a familiar nurse's face every day lends. I can well imagine, though, that it leads to an awful lot of nursing burnout, as the nurses certainly develop strong attachments to their young charges, some of whom inevitably do not survive. But every time we end up in the hospital, there is Donna, walking the halls in the culottes she favors, looking every bit like your favorite teacher from grade school or the librarian that always shushed you when you walked by giggling, but you loved her anyway because she told the best tales during storytime. My most vivid memory of Donna is from the time between Annika's first and second transplants. We were all in shock that Anni was back in the hospital because her first transplant had seemed such a smashing success. It was truly a bucket of cold water to the face, and we didn't even know how to react. It didn't really help when the doctors told us that a clot in the Hepatic Artery, which was what was necessitating the second transplant, was something that usually occurred immediately after transplant, and only rarely showed up several months later, after the transplant appeared successful. Going through the numbers it seemed that if there was a slim chance something could go wrong for her, it did. Being born with Biliary Atresia: 1 in 15-20,000. Having a blood-type incompatible with both parents (so neither of us could be living donors for her): 1 in 4. Developing 4 major blood clots (hepatic artery, femoral artery, portal vein - which clotted again after the second transplant): I don't know, but it freaking sucked. Developing an allergy to the major class of drugs used to treat the type of bacteria infecting her abdomen: ditto. As you may gather, I was feeling simultaneously numb and whiny. So when some little procedure that Annika had had scheduled for the night before got bumped to the morning, I was not happy. I was at the nurses' desk when I found out that she had again been bumped, all the way to the afternoon (meaning she hadn't eaten for well over 26 hours). I knew that IR wouldn't bump her unless they had an emergency, so I really couldn't complain. But, still, it seemed unfair. All of it. Sighing, and trying very hard not to throw a fit, which, don't get me wrong, I had already done too many times in their presence, I said in my best martyred voice, "Oh, man! That little girl of mine really has the worst luck!" I paused for just a few seconds, listening to those words, and looking around me, at all those doors to rooms of children I had come to know through the rumor mill of long-term hospital parents. Then I shook my head and said, "Oh, no. She really doesn't, does she?" Donna was there at the desk, charting her patients. I didn't even think she had heard any of what I said, but then she looked over at me and lowered her chin so she could look over her reading glasses and into my eyes. "No. She really doesn't." And she gave me a look that was both "Shame on you for saying such a thing," and "I'm proud you figured out the truth on your own." Of course, Donna at that time was primary for the most pitiful case on the floor. He was only 8 months old, and waiting for a liver and small bowel transplant. His mother had essentially abandoned him when she found out how sick he was, which sounds horrible. But then I found out that she had lost a baby only a year before he was born, and I think the grief that comes from watching 2 babies die would be nearly unbearable. And chances were against his survival: babies who need both a liver and a small bowel wait much longer for transplant, and have a much harder time avoiding serious complications while waiting. Like many sick babies, he was only happy being held, but there just weren't enough volunteers to hold him 24 hours a day. The sound of him crying in his room, alone. God. And then the knowledge that these might well be his last experiences of this life. Meanwhile, Annika was ensconced in constant human contact. My cousin had already agreed to donate a piece of his liver. We bought toys in pairs, one for Annika and one for him. But it wasn't really what he needed, we knew. And now, 3 1/2 years later, Annika is living a glorious and bountiful life. The major complications 18 months ago that had her doctors frowning when they talked to us have not led to the kind of deterioration that they expected. It's amazing and unlikely, and we like living in the slim odds this time. Back in May, I wrote an entry about finding a website that documented a couple's decision not to pursue transplant with their daughter, who had the same liver disease as Annika. Instead, they watched her die, giving her pain medicine to make her comfortable, when a liver transplant would have given her a better than 90% chance of survival. As I struggled to understand how any parent could come to this decision, it did occur to me that children all over the world die of this disease. Most of the world's population does not live in a country that performs liver transplants, the most costly and complicated type of transplant surgery, on a regular basis. And, even in this country, we are among the lucky insured, who don't have to struggle and depend on the charity of medical boards to get treatment for our child. And now it is happening again, in the United Kingdom this time. And I am even more stunned this time, given that country's generous health care and social support system. In this case, the courts may well step in and force the mother to treat her son, to allow him to be transplanted. I am trying to see the mother's side; it seems wrong to me that a court should dictate this decision. But I can't help but hope that they do, and soon, and let him be one of the lucky ones, too.
* (edited to add a few notes about the movie) A) The baby you hear in the background is 4-month-old Frankie, not one of the lone hospital babies I've been mentioning lately. Anni was in strict isolation (which also means no leaving the room at all) when I shot this. B) I do know that hospital sinks are generally not good places for kids to play, especially immunocompromised ones, BUT C) This particular room had 3 sinks: by the bed, in the bathroom, and by the door. The one at the entrance was where everyone washed up as they entered and left the room, so this sink was relatively unused, AND D) The sink had just been cleaned, MOREOVER E) I don't usually allow her to play in the sink, but she was truly going stir-crazy. She was nearly over the latest infection, and sick of her cute, little blue-and-yellow room. STILL F) Oh, baby girl, don't put your mouth on the sink!

Tuesday, August 16, 2005

fair warning

So here's what happened on Friday night: At 11pm Annika ran out of her room. I was still awake, so I heard her murmuring to herself as she ran for the bathroom, "Oh, please, Mama, please please, Mama." I followed her into the bathroom to join her for the first session in an all-night diarrhea fest. She was up every 30 minutes to use the toilet, until 3:30am. Which was when she added vomiting into the mix. She had a fever, but it never topped 102, which is pretty unusual for her. After a doctor's visit, blood draw, and stool culture (collected by me! fun!) in the morning, she began to perk up. By that evening she was already feeling much better, so I'm thinking either the world's wimpiest GI viral infection, or else she ate something just a little off that day. Either way, we were pretty pleased with the short run. Annika, however, thought that she should probably get to spend the night with me again. I explained that, no, that was only for when she was sick. Unconvinced, these were her cheerful last words to me Saturday night: "Good night! I love you! See you in the middle of the night!" So Annika was admitted to the hospital as scheduled on Sunday evening to prep for her transjugular liver biopsy. They did labs, again (2 sticks), and started an IV (another 2 sticks). She called me at 9pm to tell me all about it. It was the second time she had called me since arriving at the hospital at 4pm. The phone rang again at 7am. Annika. I almost never hear her on the phone, since I'm always with her, and I was shocked to hear how heartbreakingly sweet her little voice sounds over the telephone. It was strange to have Jörg go with Annika to the hospital this time, as my role has usually been "hospital parent," especially when any overnight stays were required. But it's also been great watching Jörg and Annika's relationship develop and change as she grows older and more independent. She sorely missed his presence during his recent conference trip, in a way that Frankie is not quite old enough to grasp. First, Annika cried all morning long on the day that Jörg was to leave. She wanted to come along to drop him off at the airport shuttle, but getting her back into the car to drive off was a huge effort. Especially since she was wailing and screaming, "No! Nooooo! Please! You can't do this to me! Please don't do this to me!" (I know! What a dramatic turn of phrase! I swear I do not watch any daytime soaps around the girls and have no idea where she gets her swooning elocution.) A few hours later she had calmed down. But as the days wore on, she began to hatch a plot to ensure that Scotland would never again steal away her father for 5 whole days. This is what she came up with: "Mama? You know what? When Daddy gets on a plane to leave Scotland and to come back home? They are going to put up a big sign on Scotland that says, 'No more coming to Scotland! Stay away! You are way too STINKY. Go home. Don't come back, ever.' " So if you are wondering about those apparently anti-social billboards dotting the borders of Edinburgh, now you know. Staying home gave me the opportunity to catch up on the laundry, but also to focus my attention on Frankie in a way that's just not possible with the megawattage of Anni's personality always shining over her. She loved the chance to sit and tell me about all her toys, and astound me with her new ability to name colors. Well, OK, she says everything is "gween," but she gave herself away when I actually showed her something green. She gave me a very sly smile and pronounced it blue. And, by the way, did you notice that Frankie said "gween"? Yes! Consonant clusters! (That is what you were thinking, right? Because we are all linguistics geeks.) She even pronounced the word, "Grandma," perfectly, although I hope she doesn't stop altogether calling her "Baba." Plus, she is talking in complete 4-word sentences. ("Mommy tickle my tummy!"). She is pretty much the epicenter of a language explosion right now. Given that she is relatively advanced verbally for a 22-month-old child, when she refused to wear a diaper on Sunday, I decided not to debate the issue but instead begin the long trek toward potty training. I got out Anni's old potty chair, and sat her down on it, explainng that she was to put her pee-pee and poopy in there. I turned on Sesame Street to entice her into sitting on the chair. Some 10 minutes later, Frankie jumped up off the potty and announced "Pee-pee!!!" And I watched her urinate right in front of the potty chair. OK, so chalk that one up to "still unclear on the concept." It occurred to me that my relationship with Frankie is, by necessity, very different since Annika is in the picture, too. She certainly does not get as much undivided attention as she was clearly enjoying these past few days. And part of me was a little sad about that. But pity the parent who doesn't understand that their relationship with their child is just one part in the grand scheme of social networks that go into that developing personality. Frankie's relationship with Anni is also a huge part of what makes her a happy, joyful little being. And vice-versa for Annika. The first time that Annika wanted to call home, she only spoke to me for a very brief couple of minutes before she was asking to talk to Frankie. "Put Franko on the phone, please!" I handed the telephone to Frankie, and she listened very intently. Then smiled. Then squealed. Noone, not even Grandma, has gotten Frankie to squeal happily on the phone before. And I see how much Annika is influencing Frankie's behavior, even when she's not here. Sunday evening we went out to pick up a few things at the store. Frankie heard a very tiny baby start crying. Sitting there in the seat of the shopping cart, she started to sing, "Baby, don't cry," which was a song that Annika made up to sing to Frankie when she was a tiny baby crying herself. It was a lovely moment, remembering how Annika would stroke Frankie's head as she sang her own little song of love. I wonder if Frankie was remembering that, too.
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So Annika is home now, sleeping in her own room again. Jörg tells me that they had to have 2 tries to get her IV in, and again 2 tries to draw blood, and then several sticks to check her hemoglobin after the biopsy. Overall, though, those aren't bad poke stats. There were no NG-tubes involved in this stay, and no urine catheters, so she's not too unhappy with the trip. She got to have her Favorite Nurse of All Time, the beloved Beata, and I hear that she also made great friends with Donna, another of my favorite nurses there. Anni also got to meet the adorable Natalie, another liver kid, who was recently transplanted and has had a very rough post-transplant time. She and her parents have been in the hospital far more than home since her transplant back in February. I was sorry to have missed meeting them finally. Annika did not have a single room for the first time in over 3 years, but this makes sense as she is doing so well. The single rooms need to be saved for the sicker, more long-term patients who need the peace, and also the protection from outside infection that a single room provides. And, of course, patients with infectious diseases need single rooms. So I understand why Annika ended up in a double. Still, I like the fact that many children's hospitals are moving to single rooms for all patients. Annika was sharing her room with the toughest of all roommates: a small baby in the hospital without parents. Again, it makes sense to try to give babies roommates as, clearly, small babies are not built for being left all alone in a room. But it can be tough when the baby wakes up in the night, and there's noone there to pick him/her up. Of course, the baby's nurse will eventually come, but sometimes it can take a little while. And I know that my little Annika is a sensitive creature, and I worried that she would come home with a broken heart, seeing a baby who didn't have someone there to hold her when she needed it, right away. I'm so glad Annika has never had to spend a night alone in a hospital. But I know better than to judge those parents. We are lucky enough to be able to afford to take time off work, and to have me work only sporadically. If we need it, my parents would always drive up to help us out so we could be there with Annika. The fact that parents are sometimes forced to leave their babies alone in the hospital has more to do with the general inequities in healthcare and social support in our country than with bad parenting. It makes me furious. So that's it. Anni is home. We don't yet know the results of the biopsy, but should by tomorrow sometime.

Monday, August 15, 2005

the hygiene theory

An update on Annika is coming, but meanwhile I have gotten caught up with some wonderfully provocative comments made on my seemingly innocuous (and badly titled) about rings and things post below. First, Andrea noted, "But--aren't those little antibacterial thingies supposed to be the tools of the devil or something?" That's exactly why I read her every, single day: she is absolutely unhesitatingly putting herself out there, and pulling no punches. I posted a longish reply to her comment, basically saying I had heard no such talk of satanic activity swirling around the Purell business, but that I would be sure to check the bottle for any sign of a moon and stars. I did mention a study, though, and didn't give a link. So here's a report on the study showing hand sanitizer decreases incidence of tummy bugs. Then Mike, an old college buddy and also an extremely smart and kind guy, questioned my unbridled enthusiasm at the proliferation of hand sanitizer in our world by bringing up the hygiene theory of allergies and asthma. Basically, this theory supposes that the noted increase in allergies and asthma in developing countries is due to our increased concern with hygiene and more frequent use of antibiotics to treat bacterial infections. Thus, the immune system is left with nothing to do and goes a little stir-crazy, eventually beginning to attack our own cells rather than those of harmful foreign intruders, leading to allergies and asthma. I posted a reply to his comment right away, but then couldn't stop thinking about what he had said. So I began to write another follow-up comment, which eventually became long enough that I decided to make it its own post instead. The first thing that I neglected to say to Mike in my quick response was that I was sorry to hear about his as-yet unidentified allergy. Allergies are not to be trifled with, and I hope he is now armed with an epi-pen. Let me also say up front that I do believe that messing about with the immune system is likely to lead to allergies. There is new work being done in the transplant community showing that kids on immuno-suppressive drugs tend to be much more prone to developing violent, life-threatening allergies. I know of one little boy in particular who seems to be allergic to damn near everything, and I do mean everything. It's a nightmare. So I don't want to pooh-pooh the role of allergies in people's lives. And it seems reasonable that cutting down on the immune system's work, either artificially by drugs or by simply living in a cleaner environment and giving antibiotics to treat bacterial infections, seems a good theory to account for higher rates of allergies. But here's the thing: Some of the countries with the lowest incidence of allergies/asthma are in the developing world, where infections and parasites during childhood are rampant. Now, I have no doubt that children who contract these parasites/infections and fight them off on their own come through with stronger immune systems and smarter immune systems (i.e. immune systems that know better than to attack themselves, as is the case with allergies). But, geez louise! The rate of childhood mortality in those countries? Pretty high. It seems likely that if our children are exposed to many of these infections that we now shelter them from, that there will be quite a few children coming through with stronger, smarter immune systems. And there will also be a sizeable group who dies, either from a weaker immune system than the survivors or from the bad luck of being exposed to a more virulent strain. I guess my view is biased because I am the mother of one of the acknowledged "weak ones." But I'm just not sure that this approach is one that we would want to take as a society ("let 'em get sick and the strong and lucky ones will survive and be stronger for it..."). Maybe I'm straw-manning the opposition here. I don't mean to. Feel free to make a compelling argument the other way. I'm truly interested in thinking about this a bit more. Here are some other caveats to the hygiene theory that I came across in my quick reading: 1) The correlation between more infections and lower rates of allergies/asthma only holds for the first 6 months of life 2) The hygiene theory does not explain why there has been a rise in allergies/asthma in poor, inner-city environments, where the hygiene theory predicts there should be lower rates 3) a new study suggests that the observation that children born as second/third/later siblings show lower rates of allergies/asthma may be due to the mother's changing immune system with each successive pregnancy, rather than the supposition that later children are exposed to more bugs thus making them less likely to develop allergies (the hygiene theory) 4) Some of the earlier studies on the hygiene theory have been criticized as flawed as they often rely on self-reporting questionnaires and may suffer from faulty set-up. Here's one such report of a study, along with the noted criticisms. Also here is a general overview of allergies, the hygiene theory, and alternative hypotheses I suppose that, as a parent of a post-transplant child, I am too used to looking at life as a series of gambles and trade-offs. So when I hear that washing hands frequently, which is certainly and demonstrably beneficial to one's health, may also lead to later allergies and asthma, I tend to fall on the side of choosing to take that risk in order to avoid what I see as the greater risk to my child's health (including Frankie, not just Annika). I had heard of the hygiene theory before Mike mentioned it, but it's worth noting that I always read it in the context of "working moms shouldn't feel guilty for sending their children off to daycare, where they will be exposed to more germs than the infant of a stay-at-home mom." This, I think, is really the most useful approach to take on the hygiene theory. Decreased hand washing would be the wrong action to take in response to this theory.

Friday, August 12, 2005

I will be up late again tonight

so maybe I will catch up on my email. But the actual reason I anticipate little sleep is that Annika is having horrendous tummy pain tonight. The crying out, doubled-over kind of pain. It's times like these that Jörg and I glance at one another, wondering if we should take her to the hospital or wait it out. After about 30 minutes, she fell back asleep again, and so we're hoping it's just a little viral thing. Annika's biopsy is scheduled for this Monday morning, although she has to be admitted to the hospital early Sunday evening to get her prepped and ready to go (for any liver parents/medical types out there -- she's not having a percutaneous biopsy, which would be a 1-day in and out thing, but rather needs general anesthesia in IR for a transjugular). However, if she has some sort of illness, anesthesia will not approve her (they don't take the risk unless it's an emergency procedure), and we'll have to reschedule. This, however, is the last weekend that Jörg will be available to either stay with Frankie or go with Annika. And this after the following scene played out today: I take a cranky and tired Frankie upstairs to nurse, rock, and settle down for a nap. The phone rings. I hear Anni dragging a chair over to answer the phone. I hope the caller on the other end fully understands that a 4-year-old is not capable of accurately relaying a message. Remind myself to work with Annika on letting the answering machine pick up. Five minutes later, I am surprised when Annika shows up by the rocker just as Frankie was beginning to drift off. Frankie starts to cry at the sound of Annika's voice. Anni: "Mama! There is a person on the telephone. There is a person talking from the hospital. That person is really making me angry! I am really upset about the person on the phone. That person keeps saying my name and I am really upset about that." Anni is usually very good about entertaining herself while I put Frankie to sleep, and it would take a lot for her to come upstairs, knowing she would likely wake up Frankie, ever alert for the sound of her beloved sister's voice. So I knew that I had better check the situation out. I rushed down the stairs, and place a wailing Frankie down in a chair in the living room so I will be able to hear the phone. Me: "Hello?" Hospital Woman: "Hello? So she's not there alone? Thank God! I'm calling from Children's Memorial in Chicago." Me: "Of course she's not home alone. I was just upstairs putting the baby to sleep." (Pause here so that the woman can undoubtedly hear Frankie's indignant caterwauling.) Hospital Woman: "Oh, I'm sorry. But you know I do sometimes call homes where that happens. And she just kept telling me to call you back. I wasn't sure there was actually an adult there with her." (Me thinking, "Wow! Annika was actually being quite phone-mature.") Hospital Woman: "Anyway, I just have some questions for you before her procedure on Monday." (Me thinking, "OK, but you are the third person to call us with these questions, you know.") Me: "OK, go ahead." And then I go through, again, the list of all her allergies and medications and current health status. She puts me on hold once, and I run to pick up Frankie, hoping that will stop the heartbreaking sound of her confused crying ("Hey! I was going to sleep? Is nothing sacred?"). Fully ten minutes later we reach this point in the conversation: Hospital Woman: "OK. Let me give you your instructions for the day of the procedure. You need to arrive at the hospital Monday morning..." Me (interrupting): "No. She's being admitted Sunday evening. She needs to be given FFP through an IV before the procedure." Hospital Woman: "Oh. Well, then. I guess I didn't need to go through all this with you. Terribly sorry." Me (shockingly placid): "OK, then. Goodbye." After hanging up the phone, it was clear that Frankie was no longer in the mood for a nap. So I sat down to figure out why Annika was so "angry" about this phone call, and it turns out that this woman was being really insistent that she come get me. Annika, I guess, kept telling her "No," because she didn't want to wake up Frankie, but the woman kept insisting, sending poor little Annika into a fit of nerves. Then add the fact that Anni is pretty pissed off about going to the hospital again in the first place, and I don't doubt that she was getting a bit emotional with Hospital Woman. All in all a fairly crappy experience for all involved, especially Annika. I can't really blame Hospital Woman, though. I'm glad she cares enough about kids to investigate the situation. Although I'm not quite sure why simply calling back 5 minutes later, as Anni reasonably suggested, wouldn't have done just as well. So call #3 to set up the upcoming biopsy, which may well be cancelled anyway. Oh, man. I'm two days too late for Wednesday Whining. It's all about the timing, isn't it?

about rings and things

I don't wear my wedding ring anymore. It's not at all some sort of statement that I'm making, "I am married, but am not marked by possession...Physical adornment by heavy jewelry is simply a stand-in for the shackles of an ever-pervasive patriarchy...Advertising economic status on one's fingers only encourages the unhealthy urge to attain more more more in the pursuit of happiness defined by material accoutrements..." Pshaw. My fingers have just grown too fat. Plus, my hands are subjected to so much soap and water and hand sanitizer in the course of one day's living that I'm never going to get back into the career world following my dream of being a hand-model. And I keep my nails really short, to discourage gathering bacteria under them. Really, drawing attention to my stubby-nailed, soap-roughened fingers with rings is just not a great idea. Still, I've been thinking about getting my wedding band resized. But that feels like giving up on my plan of losing weight. And then there would still be the issue of washing hands every 5 minutes or so. Not only will my hands probably continue on their course of aging at the average canine's speed (7 years for every year actually lived), but I will also have to contend with my own personal phobia concerning jewelry. Back when I was 16, I became obsessed with owning an opal and diamond ring. I pored over pages and pages of rings displayed in the circulars that arrived stuffed behind the daily newspaper, fantasizing about the certain glow that would surround my entire being with such a piece of beauty on my finger. I took a part-time job working in food service at the hospital, saving my earnings until I had a reasonable start on my first year's college expenses. Which was when I decided that I also had enough money to sneak out a bit to finally purchase my ticket to instant loveliness, a gold ring with a little circle of opal in the middle, with the merest chip of a diamond nestled next to it. I painted my nails, shaping them lovingly with an emery board, and wore my ring proudly every day, depositing it carefully into its velvet box on my nightstand every evening before bed. This went on for three glorious weeks. However, working food service in a hospital means that frequent hand washing is a requirement of the job. The sinks were actually set out in the open, so the supervisor could be sure that her band of irresponsible teens were actually satisfying the hygienic demands of the hospital satisfactorily. Of course, being 16 also meant that I was just one big walking tidal wave of hormones. So, naturally, when the guy I had a crush on decided to chat with me one day while I was washing up before work, I didn't notice the ring, slippery with soap, slide off my finger and down the drain. In the interest of sanitation, the elbow below the sink was welded closed, and the physical plant guys did not deem the $50 ring of a hormone-addled teenager reason enough to open the bend. I was miserable and, for the first time, I didn't spare a sympathetic thought for the poor souls in the floors above me who were about to be served a "soft/bland diet" off of bright orange plastic trays. I felt silly crying over that ring. I really did. So I decided right then and there never again to wear any piece of jewelry costing more than $10. When my parents bought me a beautiful garnet necklace as a graduation present, I wore it on graduation day and then tucked it away to give to my own daughter someday. Judging by Annika's fondness for adorning herself with shiny plastic things, despite the fact that she hardly ever sees me in jewelry, I won't have to wait long for her to love that necklace. Frankie will get the opal necklace and earrings that my sister bought me to soften the blow of losing the ring. Of course, I did wear my wedding band for several years, and it did cost more than $10 (but less than $50, if I remember correctly). I did not have, or want, an engagement ring, much to Jörg's relief. Still, I'm missing that band. I mean, if I have it resized bigger, I can surely downsize it when I finally get myself back in shape, right? It's not like giving up altogether, surely. But there still is the issue of the non-stop hand washing, which has turned into something very like an obsession with me, post-transplant. Frankie, at 22 months, can already say "hand sanitizer" perfectly, and Annika is so well-trained that she cleans her hands in a thoroughly automatic fashion at the appropriate times (after the toilet, after touching the cat, after throwing something away, after wiping her nose, before eating, upon entering the house, upon leaving the hospital for blood draws, upon entering the car, and every 5 minutes when we're in a place crowded with children or animals). Recently one of my favorite famous bloggers, mimi smartypants, wrote a little paragraph wondering about the necessity of washing hands after using the toilet. (Notice by "recently" I mean in May. See? I really do get behind on my internet reading and response duties. If you're looking, the paragraph is about halfway down, under the heading "Blasphemer.") After I picked myself up off the floor where I was writhing in pain at the mental picture of unused bathroom sinks and poop-covered hands reaching out to stroke my daughter's soft head, I fired off an email: [blah blah blah, who I am, how much I love her writing, etc. segue to:] But, EEEWWWWW! Questioning post-toilet hand washing? Most tummy bugs and such friendly things as Hepatitis A are spread via oral-fecal transmission (official medical terminology!). Since I assume that most people, like me, would never intentionally put shit in their mouths, it seems safe to assume that people sometimes gets poop on their hands unintentionally while wiping or flushing or sitting down or whatever. If everyone in the world would just wash their hands with soap really well after using the toilet...(sighs dreamily)...just think of all the nasty illnesses we could wipe out (wipe out! ha!). No ill will, though. Just a bit concerned at the thought of a new wave of rebellious hipsters skipping the soap and water. So I guess I'm practically a hand washing activist, although my efforts are usually a bit more passive-aggressive. For instance, as I stand in public restrooms making sure that my daughter rubs her sudsy hands together for at least 15 seconds, I have to fight back the urge to correct other people's less-than-perfect hand washing techniques. Instead I usually just "remind" Annika a little too loudly to do correctly whatever it is that that poor person is doing wrong ("OK, Anni, be sure that you don't start rinsing until the full 15 seconds is up, and, no, rubbing your hands under the water with the soap still on them doesn't count!") Honestly, it's no wonder I'm not the most popular mommy around. This little control quirk of mine is exactly why my mom could only stand to stay with me for 2 weeks after the birth of Frankie. Still, I think our society is becoming a more clean-handed one. At Annika's preschool the kids are required to wash their hands with soap and water before entering the classroom, where they are also given a squirt of Purell, just in case the hand washing was a typical preschooler's half-assed job. And then at the county fair this past week, Annika had to use one of the port-a-potties. On the blue plastic door was a sign that advertised the fact that they were equipped with "hand-sanitizing stations" inside, which made my heart do little flutter-y things. But then, even better, after Annika was done and we turned to leave we were confronted with a cheery little sign that featured an arrow pointing to the hand sanitizer and asked, "Did you clean your hands?" Exactly like a nagging mom. Awesome. Just awesome. So maybe someday soon having reddish hands roughened by repeated use of soap and alcohol-based hand sanitizers will be the new mark of beauty ("Hey, look! She must have really clean hands!"). Hey, it could happen. I still think I might get that ring resized, though. I missed Jörg while he was gone.

Friday, August 05, 2005

Grandma the Ogre

Just a few days away from the computer, and the world, known through my internet connection, keeps moving on. I have much to catch up on over there on the sidebar, but at least one big event I have finally caught wind of. Havalah, one of my liver kid links, received a liver this week, but has already suffered a post-transplant complication, which may cause her to need an immediate retransplant. This complication, hepatic artery thrombosis, is the same one that Annika suffered after her first transplant. My thoughts are with her and her family, and I know prayers would be appreciated, too. You might also leave an encouraging message at her guestbook. It's always nice to know that even strangers are pulling for your child to make it through a rough time.
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I've been inflating helium balloons like a madwoman for our organ donor awareness event at the county fair. We went through nearly 1,000 of them on the first day, and most of the fair-goers were sporting the neon-green organ donor awareness reminderbands we were giving away. It's been a lot of work, but I'm hoping for a lot of payoff, as well. If we could increase to 100% the number of people willing to donate their organs at the time of death, so many lives could be saved.
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Jörg is in Edinburgh in Scotland giving a paper right now. I'm a tad jealous that this is the second time in our marriage that he's gone off to my favorite European city without me. Oh, well. He missed Annika's face during this episode: My mom and dad are here to help out with the girls while I run the booth at the fair, but I have been taking the girls around when I have a chance. Yesterday, Annika and I spent two hours wandering around the animals. This year they have baby chicks on display, although you are not allowed to pet them. However, it turns out that the woman in charge of the chicks display works at the university and so knows Anni, and so she got one of the chicks out for Annika to touch. This was, by far, the high point of the day for her. When she got home, she was eager to tell all her adventures to her grandma. Now, my mom was raised on a farm, and she realized that here was her opportunity to tell tales from her childhood to an eagerly receptive audience. Since Annika was excited about the chicks, she began there: "When I was a little girl, we would go once a year and buy ourselves 100 or even 200 chickens. We had a little house for them, and we took care of them." "That's a lot of chickens. Grandma, why did you buy so many?" "Well, we collected their eggs and sold them. And we also ate quite a few of the chickens." At the word, "ate", Annika's hands flew to her mouth and she sucked in her breath so hard there was a little whistling sound. Her eyes got rounder and huger than I have ever seen them before. Which was when we all realized that Annika had somehow not connected the word "chicken" to describe her nuggets, and "chicken" to describe the animals she adores. We'll see if a new era of vegetarianism ensues.