Not Calm (dot com) four children ~ two adults ~ zero peace
Saturday, February 28, 2004
If you want to make a mama's day, say to her, "You have four kids?! You're too young and beautiful to have four kids." I guarantee she'll forget about her horrible cystic acne, those too-ugly-to-be-heroin-chic dark circles under her eyes, the sty on her eyelid, her matronly nursing bra strap that won't stay in place, her hair in desperate need of cutting and styling, her unmadeup skin and unfiled nails and lotionless hands and (aaak! I was rushing a little this morning and forgot and this has never happened before) unbrushed teeth.
We went to a wedding today. It was beautiful and fun and I'm very happy for my friend even though she's moving 3,000 miles away. If I could post pictures I would.
I bought a pair of pink jeans. Never say never, right?
Okay, I hafta type really fast so I can go to bed.
My poor honey is out working in the cold rain. I miss him.
Today was Willow's birthday. I had sort of hoped after her roller coaster year that today would be a day for her to relax and eat cake and play and be happy. Not in the cards. She has a nasty cold and it has settled in her lungs. Sophie's too. Today she had a checkup with her pedi for weight gain. I was glad we were going because she was wheezing and early Wednesday morning, around 3 am, we gave her a couple of puffs of the albuterol inhaler.
So, when I got to the appointment I asked them to take a listen, and even without the stethoscope it was evident that she was having problems breathing. Her weight gain was about 3 ounces for the week. She's grown 1/4 inch in 20 days. We thought that by now her medical issues would be winding down, but really things are just growing even more complicated. The doctor talked about admitting her overnight because of the wheezing, which was diagnosed as "viral wheezing." I gave Willow three 10 minute breathing treatments, with time between each for the staff to listen to her lungs, check her blood oxygen, her pulse, and her respiration rate. They didn't help much. A little. She was given a dose of prednasone, along with a prescription for four more days.
As for the original problems, here are the new developments:
+she will be tested for celiac disease +lots more blood will be drawn to check her iron and platelet levels, liver function (she's had some elevated numbers), zinc level, lead exposure (we did this last month, so I'm going to ask the doctor why it is being repeated), and a cbc.
+I am supposed to write down everything she ingests, and how much, including when and for how long she nurses (groan)
+we have to see the evil nutritionist to determine what her general caloric intake is and if it is adequate (double groan)
+she will see the GI doc and possibly have endoscopy to see if her intestines are damaged and causing her malabsorbtion
And in the meantime she has weekly doctor visits and physical therapy and home health visits every other week. Also, Lexy has homework and is in a play. He needs help learning his part, and there are t shirts and costumes and photos and tickets to order. There is a fundraiser and we're supposed to sell coupon books. Nate has gymnastics weekly. Sophie should go to the doctor, too. She and Lexy need to have their dental appointments rescheduled. The van REALLY needs to have multiple repairs done. We are going to a wedding and a birthday party this weekend and need to get gifts. I didn't get Nate enrolled for kindergarten in time to get into Lexy's school. Friday I will get a copy of his birth certificate and see if there's room at the local school. I have to figure out if Lexy will go there, too.
I think my head might explode.
John is such a good dad. He put the air purifier next to Willow's crib and cranked it up. I love him.
Tomorrow I have to leave the house at 7:30. My mom takes Lexy to school, because she is the best. I will drop Nate and Soph off at K's house and take Willow to a 9 am appt. Of course it is rainy and Nate usually sleeps until 8:30 or later. Should be a wonderful morning! Ya know, I write this all down because I don't have a paper journal going these days and I want to remember all these details later on so that if I feel busy and stressed I can look back and be glad it isn't now still. Make any sense? Anyhoo, if the whining is too much, please skip or skim.
Sophie is on my lap, coughing and feverish and clutching a little magnet dog. She wants her Papa. She does not want homeopathic cough remedy or tylenol. I think she and Willow both have RSV. I'm going to Willow's doctor tomorrow anyhow so I'll ask her to check.
Can we just be healthy?
I'm getting incredibly frustrated with Willow's medical care. She still has the ng tube. I give her three ounces of progestemil (a pre-digested formula to combat her malabsorbtion) five times per day. Before those feedings she eats solids. She likes scrambled eggs, yoghurt, avocados, bananas, crackers, cheese and so on. She isn't picky. She's growing longer and gaining weight. She nurses frequently. But, the doctor won't take the tube out because she isn't gaining fast enough. She's gotten pretty chunky and I don't know where she'd put all these pounds the doctor thinks she should pack on. I also don't know how I could reasonably get her to eat more. I wish they'd put their stinkin' charts away and look at the patient. She is gaining. She is eating. Her anemia is resolving. Why obsess on how she compares to other babies? She is a preemie and needs time to catch up. Today the home health nurse said, "How early was she? Seven weeks. Oh, that's not much." Right. Weighing four pounds and not having a suckling reflex and spending 15 days in intensive care, those things couldn't possibly cause a baby to not measure up to the stupid growth chart!! How silly of me to think so.
I ought to go put Soph back to bed. Poor little thing. Her dial is set to 'cough.'
The kids fell asleep before me! Yay! Now I can read blogs until I pass out. I have a lot of catching up to do.
It's Sunday and the older kids spent the day with their dad. Since getting ready for Willow's party was an active sort of activity, we decided to have balance and make today more inactive. We watched a movie, Mirror, by Andre Tarkovsky. I need to watch it a few more times because I was too distracted by the great visuals to follow the story as closely as I should have. I kept looking at the windows. I have this odd, well, passion, really, for old windows. The kind without screens, with glass that is distorted a little. I love old stained glass, too. But that is neither here nor there, I suppose.
My legs are falling asleep. Think I'll stretch and go catch up.
Jeez, I throw a little birthday party and I'm too busy to get online for a week. Pathetic.
I don't even have time right now, since I need to get three out of four children to bed. Sophie ate cake and ice cream all day and passed out in the living room with a smile on her face.
On friday night, Jessie Sykes and Neko Case and Bonfire Madigan are playing. John promises to bring me a tshirt. Bah. I want to go, too. He also promised to ask them to play together again in a year or two so that I can go see them. Willow is still too small to leave behind for that long, but too big to tag along. She is doing well, by the by. Still has that dang tube up her nose, but that didn't stop her from enjoying her party and playing her new drum and xylophone. She also got the softest bear, the cutest blanket and the most adorable sweater ever. Her new sandals make grown men squeal, they are so cute. Quite a haul for the little smiling chunk.
I'll try harder to stay awake late enough this week to update. My friend D called the other morning certain that something was wrong because I hadn't blogged! It's just an incredibly busy time. This ng tube thing is time consuming.
I woke up this morning really happy that we didn't have to go anywhere until 4pm since I'm really feeling this cold. I decided to take Willow to see my doctor, who is the other kids' pediatrician, for a 2nd opinion about the feeding tube and when to use it (some docs say night, others say day) and for how long. So, other than the doctor appointment the day was pretty open.
It began with Sophie throwing a shrieking fit (just ask D; we were trying to talk on the phone) because I wouldn't let her have an entire bag of veggie soy crumbles. Frozen veggie crumbles. I put a little in a bowl and offered it to her. Of course she screamed and threw the bowl and flipped out because she wanted the bag. Last night she did the same thing because I could not take her to OUTER SPACE. Really. She was screaming and sobbing, "I go owdder pace. Pease. Owdder paaaaaaace!" Yeah.
From there things settled a bit. I let Nate and Soph watch the Power Puff Girls so I could feed Willow and drink my coffee and read the paper in peace. Well, peace except for the sound of the PPGs beating the living shit out of Mojo Jojo and Fuzzy Lumpkins. Eh, well.
I called the mother's milk bank where I was led to believe doctors had sent my breastmilk to be scanned for content and quality control type purposes. Didn't happen. Somebody was trying to shut me up. That would be why they kept telling me the results were, "not important," when I kept asking for them while we were inpatient.
While I was on the phone with the lovely woman from the milk bank (I'm not being sarcastic) Lexy got dropped off. The woman, C, who drove him home handed me one of those dreaded slips of white paper with the checklist of what germs your kid has been exposed to at school this week. You know: strep, tb, chickenpox, and oh please no please don't let it be oh nonononononono oh surely not. . . Yup. Lice. Ahhhhhh. Not this, not now. C said she checked him well and he seemed fine. If you know us in real life, you may have some idea why I live in huge fear of headlice. John and I both have long hair. Mine is shorter than John's and dark; his is blonde and down to his butt. If I can comb Sophie's hair once a day it's amazing and I can't imagine her sitting still for me to do the monkey mom lice picking thing. The boys, well, one boy in particular who is in first grade, would WHINE and WHINE if I tried to keep mayo or olive oil on their heads for hours. We have tons of pillows and blankets on the beds and since we have kids there are stuffed animals in every nook and cranny of this place. Then there are the hats and coats and dress up clothes. Then there are all the people who have been babysitting for us lately.
I did what I always do when I don't know what to do. I called my mom. She said to take them to the barbershop and cut off that scraggly long hair of theirs. So, we did that. And we weren't kicked out of the barbershop by any barber because he spied critters in the boys' hair. So, I'm hoping we're safe. I stripped the bed anyway, but that comes later in the story. Two kids have lice. As fate would have it, one sits right next to Lexy and the other is one of the kids Lexy has been spending lots of time with lately. I'm gonna be sweating it out for a few days. If those boys are at school tomorrow I'm going to call their mothers and do some yelling. I don't care if they have to miss the valentines day party. They won't remember that when they are grown up, but if we get lice I will have to live with hellish memories of it until I die.
Amazingly, Sophie was well behaved at the barbershop. She sat and played with the assortment of broken, hairy happy meal toys and only ran outside one time. She did get a lollipop stuck in her hair, but was not too freaked out by it. After, we went to the ice cream shop next door and then she sat in the stroller with her cone while we walked home. The kids ate their icecream on the front step together. It was a Kodak moment. Then Soph dropped her icecream on the ground (inevitable) and slurped it up off the cement like a dog. The boys washed the porch for me.
I fed Willow and we left for the doctor. We had to wait ages to see him, but I'm glad we went. He basically agreed with all the prescribed treatment. I just wanted to go because he's been my doc for a good ten years and he has always taken care of my kids, too. While there, Sophie got another lollipop stuck in her hair and she kept running away. Nate used the exam table as a springboard. Lexy whined to go home.
We got home ten minutes before John. I had nothing to cook for dinner because we've been to the doctor so much this week and I can't go shopping with all the kids. So John ran to the store for eggs while I put Willow down for a nap. I made pancakes and scrambled eggs and rice and we had egg burritos and pancakes, which is a little weird I guess. Lexy had a plain tortilla with plain rice. He is getting harder to please lately. He eats barely anything. During dinner Sophie made a huge mess with her rice and syrupy pancakes and even the syrup container.
After dinner things got insane. Let's see if I can remember it all. Sophie needed a bath and hair washing, so John put her and Willow into the tub. I washed her hair while she screamed and splashed me. I took Willow out and asked John to watch Soph and the boys, who were now in the tub. After Willow was dry and in jammies and had all her wet face tape replaced, she pooped. I changed her, then took her to John so I could wash the boys' hair. Soph ran around in her robe and got in and out of the water a few times. Then we hooked Willow up to her tube, and everyone got out of the bath and brushed their teeth. I asked Lex to strip the bed and Nate to wipe down the tables while I did dishes and Willow played on the livingroom floor. John was in our room, shaving and washing the maple syrup out of his beard.
Nate tried to move a big ceramic bowl full of nuts from one table to the other and he dropped it. His thumb was bleeding so I told Lex to get John right away to help. John appeared, half his face with shaving cream on it, talking on the phone. I told Lex to sit with Willow and wrapped Nate's thumb in a washcloth. I showed him how to put pressure on it so I could clean up before anyone else got cut. Nate was really crying and I said, "That must really hurt, honey." He said, "No, but last time I broke a bowl I got spanked." (didn't happen here, folks, that's all I'll say) I assured him SEVERAL TIMES that the bowl was unimportant and that I was just worried about him. Then he wanted me to save all the nuts. I kept what I could and apologized to him since I'd asked him to put the nuts on the kids' table to clean the big one. He said it wasn't my fault, and that he'd moved it before without dropping it. "If you wanna blame anybody, blame Santa for bringing too many nuts," he said.
The kitchen clean, we went to the back bathroom for a bandaid. And tape. There was a fair amount of blood. John was washing his face and Sophie appeared holding a little poop ball. Truly one of those "what now?" moments. Finally, somehow, I finished stripping the bed, remade it and got the kids down. Lexy was really mad that he didn't get as much tape on his finger (incredibly small but painful splinter) as Nate did. Nate said, "Lexy. I can't give you my cut." We read a little of Farm Boy. John left for work. Soph and Lex conked out, so Nate and Willow and I went to the bed in the girl's room and cuddled and giggled a while before those two dropped off. I finished the book I was reading.
It's a crazy life, but I would never trade it. (Nobody in their right mind would trade with me!!)
Even more doctor appointments today. Willow is getting better, but will have the feeding tube a little longer. Her hematocrit is at 25 and needs to be 40. It was 15 when we checked into the hospital. Like I even have a clue what the hell that means!! Wait, I'll research it! Okay this is what it means. I knew that, sort of.
We saw the physical therapist today, too. The one we love. She was impressed with Willow's newfound ability to chow down on crackers and rice cereal. Now I just have to remember to feed her meals three times a day and let her snack. I'm kidding, but sort of not. She's never eaten and she's nearly one and the pattern is that her siblings eat on the floor a lot of the time like little animals while she nurses. I'd have dinner on the table more often if it weren't for all these damn doctor appointments.
Speaking of damn. . . Nathan came up to me while I was sitting in a chair by the window (courtesy of my mom, who graciously remodeled and gave us her furniture) and tried to scare me with a little stuffed animal kind of ghost toy that vibrates. I saw him coming and when he realized that I wasn't going to be scared he muttered, "Goddamnit." Just like his mother. Between that and me TOTALLY LOSING MY COOL AND RANTING AT THE CHILDREN LIKE A FREAK at bedtime (yeah, that will help 'em sleep, Jen!) I'm ready to proclaim myself "Mother of the Year." Having a malnourished baby gives one a boost as well. Maybe I could leave them all sleeping in their beds while I run to the liquor store or something. (Please know I am JOKING. JOKING. I don't even pee with the bathroom door closed when the kids are here with me. Sorry, too much information. But it does illustrate my point that the children are generally attended, as opposed to unattended. You never know when someone will fail to get the joke. But you always know that explaining that it is a joke sucks it dry of any teeny amount of weak humor it may have once had.)
Ick. Bad mood a little???
We finished reading about the mermaid tonight. Big thumbs down from the boys who totally saw through the last paragraph. It tells about how when the mermaid becomes a sky spirit she will have to put in about 300 years of service before she can go to heaven. She is invisible and will float into children's rooms. If the children are well behaved, she gets a year shaved off her sentence. If they are bad, she will cry and every tear adds another year before she can ascend to the pearly gates. They were so very unimpressed and unsnowed.
Hans Christian Andersen. Did he have children? I looked at a few websites but I am out of patience and full of laziness. I did read that the prince in the mermaid story was modeled after a woman he loved who didn't love him back. But it's good for the kids to see the difference in that story and what the di$ney movie is like, so that when I tell them the di$ney versions of Pocahontas and Moses and other historically based stories are basically a big steaming load, they will have some experience that I just might be right.
While I was in line today at the hospital a young guy behind me (maybe in his early twenties) with the sort of hipster pierced and tattooed look going on (but in a stinky, unwashed and not so pleasant way) called me "MA'AM." I guess it's deserved since I'm over thirty and carting all these kids around, but even those of us with grey hair and wrinkles prefer to be called "MISS." I'd even settle for, "little missy," truth be told. A "ma'am" can just shoot my day, though.
I ought to go rest a bit. I'm sure someone will be up with a dream or a hungry belly or an urge to make a puddle of pee where it doesn't really belong. I should do some dishes and clean out the fridge or something useful. But sleep is sounding mighty appealing.
I have been reading. Not just things with titles like "Mouth Play for Babies" (that just creeps me out, sorry) and "Tips for Managing Oral Hypersensitivity," but actual novels and whatnot. There was The WeeFree Men (Elayne! I think that might be okay for TJ. Check it out first though, see what you think.), now it's Spirits in the Wires, by Charles De Lint. I've been reading Laura Ingalls' Farmer Boy and Hans Christian Anderson's The Mermaid to the boys at night. We keep in mind how stupid the mermaid girl is to let herself get so worked up over a guy she's never met. The boys agree that if you're going to have your tongue cut out for someone you should probably at least see if you have a few things in common first. I like reading the classic fairy tales to the kids so that we can see all the variations of it in popular culture. We compare the story to the di$ney movie and talk about how much 'nicer' they make it and why. Of course I'm always injecting my opinion into the story and they get cranky when I snap the book shut and say, "Let's talk about why she's choosing this and if it's wise."
When I last blogged we were going to go reinsert Willow's feeding tube. Poor baby. It is hellish to have a tube shoved up your nose and down your throat. Sometimes I get so angry at the medical workers who do things to babies that they'd never do to adults. Just because someone can't tell you to take it easy doesn't mean you can roughly grab them by the chin to keep them still. And when the mother of that someone says, "I'll will hold her head for you," in a firm voice, you'd better let go before you get slapped. I was, fingers almost touching graphic here, that close. But, overall it was a better experience than yesterday and we weren't stuck there for hours. I was thinking the other night at the lab how unfair it is that babies can't just go home and have a beer after a long crappy day now and then. Not often, mind you, but you know, when you've had tubes shoved up your nose and you've been stuck with needles and forced to be in rooms without windows for hours and hours.
Of course we were home for less than an hour before she pulled it almost all the way out again. What would you do?
I gently pushed it back in until I felt resistance. Then, when she swallowed, I slipped it in the rest of the way. She still loves me and smiles at me. I hope my tape job is masterful enough to keep the thing in for the rest of the time she needs it. Since she likes to eat yoghurt and guacamole and macaroni and cheese (only the purest and healthiest of substances for our littlest girl!) I hope it won't be for long. We go to the doctor again tomorrow. The back of her hand is purple and she has a little lump in her vein like I had after she was born. For months I'd find these little pea like lumps in the viens on my arms and hands from all the IVs and blood draws I had when I was sick. They seem to be mostly gone now. Often when I couldn't sleep at 3am I became certain that at any moment one would dislodge and rush through my veins and kill me.
My boys need to go to the barber. I need to call the woman who is organizing Lexy's play about costume rental*. I have to reschedule dental appointments that were cancelled while Willow and I were in hospital. We have to finish Valentine's for school and select others. I need to find a wedding gift and reschedule Willow's party (I only was trying to call everyone, I didn't do invites or anything) so we can go to said wedding. It was going to be just a teensey one but now that you don't have to share blood to be on the list, we get to go. Yay! I love my friend D and since she is so selfishly going to move to a whole other coast right after she gets hitched, I'm extra glad to be included in the matrimonial festivities. Need to take the van in to get fixed, which means it has to be cleaned out first. It is vile and horrific. I need to find my tweezers and cook the dinner I have been planning to make for a few days before my fresh sage and thyme and oregano get icky. Not the Christmas we just had, but the one before, John got me (or maybe it was my birthday, but in any event it was over a year ago) a pair of purple lavender scented slippers that go in the microwave and then you relax and sip wine and take good care of your feet. I need to do that. I still haven't used them. I can see them now, sitting there in their wrapper, all chenille-y and soft looking.
I ought to sleep so I don't end up with the ear infection I feel brewing in my left ear. I hate that feeling. I know it's coming and I'm mostly powerless to stop it. Last time a homeopathic remedy from Whole Foods did the trick. Worth every ten of the bucks, since last time I bought antibiotics (for strep throat) it set me back ninety nine bucks. Yikes.
*call about renting a costume, the play does not deal with the subject of costume rental
Yesterday Willow and I went to a 3:45 appointment to replace her feeding tube. At 6:30, after the tube was finally in place (the staff told me the wait was due to them having "a really sick kid" there. Hmmm, would that be because it's an urgent care center?) we went to the lab for a blood draw that required two needle sticks and much wiggling of the needle to get the blood to flow into the two test tubes. Not a fun day.
Meanwhile at home: John watched the kids, my mom took Lexy to play practice, my sister took Nate to gymnastics, Lexy locked his bedroom door while the bedroom was empty so that John could practice his breaking and entering skills (winner---credit card method), and Sophie dropped a piece of string cheese down into the hole in the wall made when the computer desk didn't quite make the turn through the hallway when we moved in.
Last night I woke up after a strange sleep and went to the kitchen thinking it was nearly morning. It was only 11pm. Around 3 am I discovered that I'm sick with the cold the rest of the family has. Well, I thought, at least we can stay home all day. At 4:30 Willow pulled out her tube again. So, I have to get the kids ready and hustle to an 11am appointment to put it back. Oh, and I have to hope Willow makes a nice big poop today so I can put some in a specimen container and take it to the lab.
This camper is offically tired of bucking up. But I do detest whining, so I'll try to laugh it off.
At last I have a moment to tell this tale. I'll try to keep it brief. Ha.
Willow has always been a very pale little thing. She has always been cheerful, but also somewhat clingy and afraid of large people other than her parents. We started trying in October or November to get her interested in food. We had no luck at all. I've read that some babies aren't ready for solids until they get close to a year, and that it's okay, so I didn't worry too much.
In October when the public health nurse came to our house (Willow is being followed by the county for her preemieness, to make sure she gets up to where she should be by the time she's two years old) she weighed 13 pounds and 9 ounces. She'd gained well since her last check. I didn't take her to our doctor (He's our family doc, but doesn't take medi-cal. Willow is on medi-cal. The big kids have private insurance and John and I have none.) for the regular well baby check ups because we were waiting a bit to start vaccinations and since the nurse came to us frequently, I didn't see the need to go to the pediatrician unless she was ill. She was seen in that office a few times, though. Once for some vaccinations.
In December Willow came down with a cold that left her with a wheezy cough. She wasn't running a fever, but the sound of it worried me. I took her to the medi-cal urgent care clinic, because it was Saturday and the family doctor's office was closed. The doctor who saw her walked into the room and exclaimed, "Wow!! Is she anemic?" I looked at the doctor and I guess she saw I was worried, so she said, "Oh, I didn't mean to worry you. It's probably nothing. But, has she always been so pale?" I said she had, and we agreed to have her checked out at her visit scheduled for January 2nd with her designated medi-cal doctor. (confused yet??) At this same visit the nurse asked Willow's weight. I said that she was thirteen and a half pounds in October, so she was probably near fifteen now. The nurse got on a regular scale, zeroed it out, and then took Willow in her arms and claimed that she was roughly fifteen pounds. We went home that day with an albuterol inhaler which we never used.
January 2nd came. We went for the first time to the medi-cal doctor. I'll call her Doc. B, and our family doctor is Doc. D. I asked doc B if Willow might be anemic. I'd done some reading on the subject since the December visit and learned that preemies should have iron supplements (Nobody told us that, and I am embarrassed that I didn't find out on my own.) and that anemic babies have poor appetites, are pale, and cranky. Willow had been getting harder to console, but I thought it was due to her teeth. Doc B said that we'd test her for anemia and for lead exposure, because it was routine to do so on all babies her age. That day Willow got FOUR injections. Three vaccinations (I know lots of you are cringing out there) and a flu shot. I wasn't about to take her to the lab for a blood draw. I took the lab order and decided to come back before the next visit, scheduled four weeks away, so that the results would be ready for the doc to tell me. We didn't get back to the lab until three weeks later, though we did try to fit it in unsuccessfully a few times. Also at that visit Willow weighed 13 pounds and 7 ounces, but I thought something was wrong with the scale, because, hey just last month she was 15 pounds. It never crossed my mind that she wasn't gaining weight.
So, I was going to be brief!! Ummm, I'll try harder.
Soon after that visit, on the last monday in January, the public health nurse came for a visit. I had no idea she was coming and the house was trashed. I was horrified. It got worse when we weighed Willow and she was, yup, about 13.7 pounds. She'd lost weight since October. Not good. The nurse kept telling me to feed her solids. I told her I'd done everything I could think of to get her to eat. I told her we'd tried mashed table foods, jarred baby foods, sweet things, maple syrup on her lips, scrambled eggs, rice, and so on, and that Willow refused everything. The nurse seemed like she was listening, but then she said that I should put chicken or beef in a blender and feed it to her. Um, hello, STUPID! SHE WON'T EAT. Later that afternoon, we took her to the lab. Her blood was drawn at 4pm. That night at 11pm (John had already left for work for the night), Doc B called me and said I needed to take Willow to the emergency room and have her admitted to the hospital. Right now. I got my brother to come watch the big kids for the night. I tried, but was unable to get in touch with John. I called my friend K, who has a newborn, for advice. I always go to her with medical questions. Then when my brother arrived around midnight, I took Willow and left.
Ever hang out at the county hospital er after midnight? Not too fun. It was packed so tightly that I was afraid to breathe. I was sure we'd get that awful flu or sars or whooping cough or something. The receptionists are behind bulletproof glass. That did little to inspire any safe feelings. Then a man came in the door yelling about his need for a psychatrist and a urine test. RIGHT NOW. He needed that test RIGHT NOW, because his doctor told him to get it. After he piped down, I smiled at another man sitting down near where we were standing (no seats open) and the man growled at me. I decided to pass the wait by watching the tv in the corner where BJ and Hawkeye were having a debate about who was funnier. We finally got called in.
From the get go doctors were discussing cystic fibrosis. But it was one of those, "well, it could be anything from simple anemia to cystic fibrosis, we just don't know," references. I asked the er doc if she was in any immediate danger (thanks to K who told me to ask that question) and they said no. She suddenly looked terribly sickly to me and I wondered why she'd never looked like that to me before. I asked if it looked like she had leukemia or something horrible. They said her white blood cells and platelets were fine, but that she was severely anemic. To put it in perspective, a low-normal reading of hemoglobin (red blood cells) is from 11 to 13. Willow's was 4.6. That meant she only had a third of the red blood cells she should have. The ones she did have, we later learned, were shrunken and their ability to carry oxygen was compromised. This had given her a heart murmur because her little heart was working so hard to get her body oxygenated.
John arrived while we were still in the er. I'm always happy to see him, but I was really happy to see him. Then my friend K arrived. She lives about 40 miles away, and she came in the middle of the night with her tiny baby because she thought that I was there alone. I have such amazing friends. I made her leave, after thanking her a million times for coming, so her little one wouldn't get ill or accosted by people who urgently needed to have urine tests. Then we were shown to our room.
From there it gets a little blurry. There were lots of tests. I was always present, and did lots of the holding down while she was poked with needles. The first night was one of the hardest. They needed to get lots of blood samples and she just wouldn't bleed. They were sticking her on the backs of her hands and in the crook of her elbow. The goal was to try and get an IV in to do all the future blood draws and to administer any medication, but the nurse said after the third or fourth try that if the doctor wanted an IV he could damn well do it himself. Yay nurse! The second nurse grumbled, but the first one was right. Willow turned out to never need any intravenous meds, so it wouldn't have been too helpful anyhow. We got settled into our room. We had a roommate who was sleeping with her mama on the little sofa by the window. Willow and I got all set up on our sofa, and slept a little. It was eerie to be back in that hospital.
The baby cribs there are big and have these heinous metal bars. If it was one of those talking baby movies, the babies would all sing Jailhouse Rock while the moms slept on the uncomfortable window seat couch thing.
So, as I said, the time is sort of fuzzy. Right off the bat the nutritionist, (we HATE HATE HATE her) told me to wean Willow. I looked her straight in the eye and cut her off in mid sentence and said, "I'm going to breastfeed my baby." She explained that she was all for breastfeeding, but that because Willow refused to eat, the best thing to do would be to only give her breast milk in a bottle. Because, the pseudo-nutritionist said, (did I mention that I HATE her?) that as long as she was getting what she wanted, she would never eat. Then she told me that because I'd been nursing so long the quality of my milk was poor and that was why my baby was ill. (Can I just say that I HATE her?!) I get all tense just thinking about her. So, I'll move on.
Like I said, lots of tests. Poop, pee, blood, guts, sweat. The poop had fat in it. The pee looked alright. The blood was downright scary. The guts were normal. (That was a super-cool test. We put barium in her belly and looked at her insides with an x-ray camera. It was like an ultrasound picture, but crystal clear. I could see all her little bones and guts.) The sweat (that's the cf test) was normal, too. What we're left with is a baby with an absorption problem and severe anemia.
A physical therapist came to evaluate Willow for oral aversion. We LOVE the physical therapist. She said that Willow has oral hypersensitivity. Basically that means her mouth is way too sensitive and she doesn't eat food because it makes her gag and she can't handle the textures and flavors. We decided that we'd start her on outpatient pt to teach her how to eat. I told her that the night before a nurse had force fed Willow rice cereal with vitamins and iron in it for the better part of an hour and that both of us were upset and traumatized and that Willow barfed it up shortly after the "last bite" that the nurse had been giving her for thirty minutes had finally been tearfully swallowed. Need I say how we feel about that nurse? She called me "Mommy," too. Ick. I didn't mind the ones who called the moms "Mama," but "Mommy???"
Alright. Now the doctors come to me and tell me that since she won't eat, and she's lost weight and isn't growing taller, she's in danger of starting to pay in the brain department. We can't have that. I was, and still sort of am, baffled that nursing wasn't enough for her to grow on. I asked if she could have supplemental feedings with breastmilk. They said they wanted to use formula because they wanted to see how she gained compared to the amount of calories she got. They wanted to be able to measure. I asked them (thanks again to K for telling me) to scan my breastmilk. In the end I agreed to let them put in the ng tube (that's a feeding tube up the nose, folks, sad thing to see on a happy little infant) and feed her formula. Now, compared to formula, the nutritionist and the nurse who called me mommy, well, they seem like a breath of fresh spring air after a long winter inside with a stinky dog. A dog that eats cheese. (Uh, oh, I think I'm getting sleepy and silly.) I hate formula. I hate the companies who sell it and who give away free samples to new moms and I think they should all burn somewhere for a very long time. I know it has a purpose, but I'm sickened by the unnecessary and harmful use of it and the outrageous price of it. It should be used sparingly and it should be affordable. It should not be so fucking expensive that people dilute it to save money and make their babies suffer. I'll stop my rant, but I could go on and on. In our case I came to peace with using it after a friend pointed out that formula in a tube was Willow's version of solid food. She was still nursing (the formula intake was 15 ounces per day), and since she didn't eat like most babies her age, and since she clearly needed something more, this was the best we could do for her. Still, it was hard. She started with regular old formula, then moved to one that is made for babies with fat absorption problems. She gained weight and jumped through other hoops that mostly had to do with what her poop looked like, and was able to come home.
She came home with the ng tube in. That means that we have an IV stand in the living room with a little pump on it. From the hooks at the top hang, on one side, a stethoscope, and on the other, a bag with tubing to deliver the formula and twice a day supplements. The stethoscope is to listen to her tummy before each feeding. You inject 10cc s of air in and listen for the little fart noise that tells you the tube is in her tummy, as opposed to her lungs, (no pressure or anything!) before you pump that liquid in. The schedule is for five 3 ounce meals per day at 8, 11, 2, 6, and 10. She nurses at night and as much as she wants during the day, but I have to try to hold her off when it's too close to her formula time. I don't want to pop her stomach or something. (I'm kidding. I know that won't happen. But she will barf if she gets too much formula on a full tummy. I told John she needs a "DO NOT TOP OFF" sticker on her tube. Did I mention he calls her "hose nose?")
Oh, they're playing the music and dragging me off stage.
One piece of information that my mom discovered that the woman who thinks she knows something about nutrition didn't know or didn't tell, is that anemia makes your mouth sensitive. One could even say, hyper sensitive. Let's just say that now that Willow is feeling so much better she is starting to eat. She had mashed potatoes last night, just a little. Today at lunch she willingly ate cheesecake and lunged for some coffee to wash it down. Tonight, before that 10 hook up, she got her finger in her nose beyond my oh so well and carefully constructed tape tube holder inner and pulled that sucker right out. Once again, Lexy and Nate gleefully got to exclaim, "Mom said, 'shit!' HAHAHAWW!" While I flipped out and called John and told him. But, you know, she totally knows best. She's ready to eat, and the tube was due to come out when she showed she could eat. It will most likely have to go back in tomorrow, but maybe I can finagle a way out of it. The first time it went in I cried, too, even though I'd managed to stay dry eyed during the needle sticks. It was a bad traumatic scene.
We still don't really know why she has the absorption problem. That was what prompted them to test her for cystic fibrosis. The doctor told me on a Friday that he wanted to test her for it. They couldn't do the test until Monday. I asked him what else might cause the set of symptoms she was having. He said, "I can't think of anything else, though it could be some rare thing that I don't know about."
You can see why we were so worried.
But she is fine and happy. Since her anemia has begun to resolve she has started to talk, is less clingy and nervous, she laughs more, is trying to crawl and is pulling to stand all the time. She has lots more energy and she constantly chuckles. The chuckling is so cute. It's somewhat like Bevis and Butthead, but in a good way. Is that even possible?? I mean it's sort of an out breathing little laugh that she makes over and over.
This week will be full of doctor visits. I'm hoping to get some answers. I still have to track down the results of my milk scan. Can a vegetarian successfully eat liver for the sake of her child? If the iron in my milk is low, I will consider it. I really want to ditch the formula. I really want to know why there is fat in her poop and if that is such an awful thing. Maybe she just has freaky supermodel genes. Maybe she just wasn't absorbing well because her body chemistry was so off. I don't know. But a lot of the time I felt like the doctors didn't really know much more than John and I. At least we both independently cobbled together a theory about what happened. We think that she started out anemic. As she got older, the anemia got worse and her appetite was affected. After awhile she didn't nurse enough to enable her to grow. We missed it because she was happy and developing normally. She passed all the milestone tests the public health nurse had for her. It was just toward the end there that we got any idea something was wrong. And now that she isn't so anemic, she's starting to eat and not gagging on everything that goes in her mouth. She is chewing on stuff, which she rarely did. The only unresolved thing is the digestive problem, but perhaps that will go away, too. Or maybe that is just how she is.
I left out so many things. No, really, I did! There were amazing nurses who hugged me when I cried and cried with me (two nurses, count 'em two!) when her cf test came back negative. There was the string of roommates we had. The little fifteen month girl who'd been in a car accident and was alone and crying for ages before any family came in. The boy who was having trouble breathing that had been born by emergency c-section two hours after Willow in the same hospital. The three week old boy with the infected circumcision site and his IDIOT father who treated the nurse and his own wife like crap and then was all chummy with the male doctor. All my family and friends who put their own lives on hold to take care of my kids and bring me food. Especially the one who took care of my kids for 8 plus hours a day for several days and then I found out her husband is undergoing chemo. She didn't want me to worry about it, so she didn't tell me. How bad do I feel? My mom watched the kids and spent the nights here so John could work, then had to work herself the next day. I left out how John took care of the kids and brought me stuff from home from my endless lists and when he finally got to go out briefly last night to see some friends he had to listen to me on the cell phone crying because I was feeding my baby formula through a tube. Poor John. But, you know, Nate had lost the roll of cloth tape for Willow's face and she'd pulled the tape on her face off and I hit the wall of not being able to stay calm about it. I used bandaids and then when those came off I woke John up at 5am and sent him out for tape.
There's even more. But I need to sleep. It's very late. The dickens keeps waking up and I've been typing at this for a good long while.
One last thing. One of my favorite nurses is totally Elayne's long lost sister. She looked a lot like her and she was 5'11!! It was strangely like having a friend there. Then when I got home I read all these nice things Elayne had written and she even sent email to check up on us. I love this on line community. And I'm going to really miss Pink. I was looking forward to reading all about her new house.
I can't seem to find time to get on the computer. Willow continues to do well, and I'm slowly getting the hang of five tube feedings a day. I have a whole lot to say on the subject, and I will, soon as we get the house in better shape and go grocery shopping.
We are home with our IV stand, case of syringes, baby formula (!!!!!!! I'll explain later), feeding tube, tape, stethoscope, tubing, pouches, vitamins, iron and BIG happy smiles. I need to get the boys to sleep,and if I can stay awake, I'll try to tell about our week.
Thanks for all the love you sent. When the nurse told me the test was negative I looked outside and saw a triple rainbow. Triple. Didn't know such a thing was possible!
(No hospital internet access for me, just a written note for John to type.)
Our fifth floor window looks out toward Mt. Hamilton. At night we can just see downtown among the valley of amber lights. For six mornings we have watched the sunrise. Pinkish gold clouds the color of Willow's hair.
We may go home in two or three days. She's gaining weight like she needs to and she's feeling happy and energetic (she even pulled herself up to standing position for the first time today - John). Here she has said her first words, "bye bye," and "baby." The nurses make quite a fuss over her sweet smiles.
tomorrow, monday, she will have yet another test done. If it's positive, our lives will be radically changed. We will know by tomorrow night if Willow has cystic fibrosis. I can't tell if the doctors have an opinion about what the test result will be. They just say for me "not to worry" until we know for sure. Right.
If she has it I guess that we'll find some way of coping. This is what people do. We will make sure to provide her with the best possible life. We will be able to better recognize the important things and let go of the trivial.
So, one more day of searching and wondering. Then we will move forward with whatever version of our lives this test result gives us. Either way we are blessed by the pure love and happiness that finds a home within our little family. There are many things worse than cystic fibrosis.
Thanks for your thoughts and prayers. We are grateful. Every kind word means so much when life is this hard.