almost caught up

bear with me as i catch up lia's story a bit. i've got about 1 more week worth of posting that i have not finished. as i catch it up, it will go under this post until i'm current.

mama's girl

some old friends stopped by tonight. after obligingly staying away from anywhere that they could possibly pick up germs, they came to stay the night while passing through. living where we do, we are somewhat isolated already. having lia means that we are even more so. i used to resent the fact that everyone else has moved on around us, that life has continued on as normal, until i realized that this is how life is. i also realized that this is our time to be alone.

so most days i forget that i am alone. then someone shows up and i have absorbed the fact that we are alone, and i revel in the visit. visits from old friends, friends from school are especially bittersweet. i recall a time that dave and i were free, that the world was no more or less scary than poor grades, misunderstandings, and talking about the news. it was a time of candles, soup, and awkward conversations. somehow we became not only friends, but partners, as many of us from the Souphouse years did. i can't even begin to number the amount of pairs that came from those times. they were good times, so are these.

i couldn't wait to introduce tim and patricia to lia, they already knew zaya from a previous visit. lia, though, took one look at them and started bawling. nothing would settle her, except that i pick her up and hold her. i have no idea what was going through her mind. as i held her, she started trying to talk and said 'mama'. it was plain as day, and i was not the only one who heard it.

her first word, besides sign, 'mama'. i could listen to that all day long.

11 months

to celebrate 11 months, lia looked over at me and started copying the noises i made.

i couldn't stop laughing.

how much of everything she has brought to us, healing, hope, laughter, tears, pain, exhaustion, completeness. lia's name in greek, spelled as such, means 'bringer of good news'. we are hoping for some more good news soon. her full name, eliana, means 'God has heard my cry'. we rest on those promises.

this doesn't mean that i am not thankful for who and what lia is, we just dream of more. here's to hoping for one more day, one more week, one more month of lia's happy smile gracing our lives, intersecting our joys.

minx

looking up from the kitchen, i caught lia without the cannula on her face.

i couldn't resist a few pictures, she was so pleased with herself.

her delightful grin is hard to resist. i love that she has more energy, even enough to take the oxygen off at times. i try to stay one step ahead of her, because we'd rather not use tape on her face. mostly because we'd be taking it on and off constantly. her face doesn't need that kind of hurt. for the most part, we are just waiting. i give lia her iron supplements and she gags, but no longer spews like she did as a super small baby. hopefully we can figure out how to have her drop her sats while someone else is watching so that dave and i will not feel so crazy. until then, lia is up to mischief and zaya and i try to keep up with her.

that's about how it should be with an almost 11 month old.

making things easier

i love hand me downs, through the kindness of friends i have barely known, lia has a pair of overalls and other wonderful hand me downs for her to stay warm. lately, i try to keep her in the overalls, they are handy when you've got an active baby on oxygen. i wrap the cord around a strap and then down the back of the overalls. suddenly, it is almost invisible. i like overalls a lot, they make life seem almost normal. when i trip over the cord, it won't pull on lia's face, it pulls on her overalls. i try not to trip, but it's everywhere and so is lia. the alternative is that she sits in one place. so i try to enjoy the cords, even though it makes cooking hard. i enjoy the cord because it means lia has energy to be a baby.

with this kind of outfit, we feel normal, and then i can focus on the bubbles and the growling, instead of watching to make sure the cord is on lia's face. she does such a good job growling and blowing bubbles, it would be a shame to miss them for the cord.

delay

when you're busy not thinking about what may or may not come, it's still possible to have a lot of fun. it's so rare we get to go anywhere, that we made the most of it. we kept lia off the O2 all day to help wear her down for the test. it didn't work, but it made for some nice pictures.

i think that McCall must have been a surprise to the explorers when they came through. after the desert, and the stark lava flows to the south, McCall is an escape into the sky. the lake was glassine and blue. with the cloudless sky, it was hard to tell which way was up.

i took zaya out onto the docks and we made them sway in the water. he was impressed, and i was happy to be with him somewhere new. we jumped on the dock, we splashed our hands in the water. we discussed at length the many new things we could see.

we acted like tourists, and put the kids on the iron bears for a picture.

then we found our kind of spot. we drove up higher, around the bend in a state park. the lake glimmered through the trees, and the woodpeckers cackled from the branches. while i love the starkness of where we live, i find that i miss the sighing sway of almost giant evergreen trees. the dank smell of wet forest land, the rocky dirt, the wavy grass, the thin chill sunlight. so we had a small picnic with elf cookies and special cheese crackers.

the ground was wet, and we were cold. dave stayed with lia in the truck most of the time because we didn't have any little shoes for her and because it was chilly. before we left, i brought her out for a little bit and dave took some pictures. i wish that we could stay up here, away from the future, away from problems, away from worries. i would keep all the uncertainties away, i would pack a tent. zaya and i would hike around all day while dave worked, and lia would ride in a pack on my back. she would be pink all the time, and this would be a dream. instead, we pack up and i know that this was the dream, a short reprieve.

strung

as we drove through McCall, Dr. C, the surgeon, called me back on my cell phone. never was i so glad that in a remote area my cell phone worked. i suppose it helps that a large portion of Idaho is remote and needs cell phone usage for various things.

if i had had a million dollars in which to predict the future, i would never have expected to hear the things he had to tell me. as the details fell thick around my head, i asked dave to stop the car. there was no way i could look out the window and still comprehend the information he was giving me.

her hematocrit is good, and her iron is low but not anemic. lia will be taking an iron supplement to help boost her absorption up to 46%. right now it is at 19%. after that, things got more abstract. Dr C is very concerned about her diaphragm and its height in relation to the opposite and functioning one. if i recall correctly, it's now at t-7 almost t-6.5.

'her diaphragm is high,' he stated bluntly, as he proceeded to ask me more questions about lia and her limitations. such as her activity level without O2, 30 minutes of sitting quietly. on O2, a power child into everything in sight. how low does she dip in her sats, 72-84.

the list went on, and i felt as though there would be no end to the questions. finally he sighed and said, 'i think we are going to need to tighten it up some more.'

i asked how that would happen, and he replied, 'surgery again.'

this is not a common thing. children do not get 'tune ups' after growing a certain amount with a diaphragmatic plication. besides, i hate the word 'tune-up' it implies that lia is a malfunctioning car that needs some greasing up. right now, we have entered into the realms of research and probability, lia is rare.

for now, we will try to enjoy the days that we have and grip the reality that surgery might be in lia's future as soon as this month, and as late as spring. there are no words for this new and unexpected idea, and i have run out of ideas, of thoughts. the teasing thought that someday lia would run, unfettered lingers in my mind.

traveling

the valleys were filled with rising mist and frozen fog as we traveled higher and higher from boise's city limits towards McCall. we traveled up there in order to see if lia would drop her sats at a doctor's office there. McCall is closer in altitude to our home than anywhere else we'd been while checking on lia. we still have yet to travel for fun with lia beyond the 2 attempts we made over the summer. each of those ended with lia being exhausted and working so hard to breathe that no one except zaya had any fun. so it was restful to drive this way, even if we were fairly certain that lia wouldn't do what was needed in order to prove we've got a problem.

seeing something new is worth it sometimes. and i'm glad it was worth it. i think it was the sitting in the carseat all day, but lia didn't drop her sats at all while we were in the doctor's office in McCall. she did seem to have dusky hands and feet a few times while we were up there, but never in time for an official reading.

it was still enjoyable to be somewhere new. McCall seems to be one of those places that is always filled with light. the people up there were friendly and stand-offish at the same time. the grocery store i took zaya into seemed quiet and clean enough that i could have imagined someday bringing lia inside. the list of things lia has never seen, and the places that lia has never visited is staggering to me.

by this age, zaya had flown at least 2 times with me, traveled cross country 3 times, been backpacking in the Grayson Highlands, and visited many bookstores and grocery stores with me. lia has been to 1 trailhead, and has taken many many trips to the doctor's for testing and checkups. she has spent months of her life limited by her recuperating body and is still on oxygen. most days i don't even compare them, it's not worth it.

sacred

there is something sacred to every parent, the ability to keep your child safe from hurt, safe from harm. most parents don't lose this sacred innocence until their children are older. until they fall while riding their bike, or scrape their knee while running, or need stitches, or break a bone. then there are parents who run into it far too soon, and their child is incurably ill.

lia is not one of those children, i am blessed that she is relatively healthy except for this maddening oxygen issue. while this is so, i keep thinking that i had already lost the belief that i could ever hope to prevent pain, to keep her safe from harm. from her first breath, her first day, lia has been in unassailable pain that i could not ease in any way. somehow, though, each time we approach the circumstance again where i must either inflict the pain through shots, or allow the pain to be inflicted through IV blood draws, something small and precious to me is killed.

as i hold her down, and she cries, yet does not flail away from the pain, something deep inside hurts. it hurts until i almost cry. the only reason that i don't cry is that lia needs me. so i lean in close, and i whisper nothings into her ears. i kiss her nose, i kiss her face, and i pray that this stick will bring the blood. that this time, they will find a vein, that the vein will not clot before they get the necessary blood for their tests. and lia and i wait, and she clings to me tightly, crying 'mumum mama', and i cannot even pick her up until they are finished.

when they finish, i don't even wait. i take the gauze from the phlebotomist's hands and snatch lia off the metal crib that she has been held in while they drew the blood. i hold her close and thank them for getting it the first time, instead of the seventh. and i dry her tears, and then we leave.

walking out the door, into the fresh air, we both breathe a little more freely. and we've left behind the testing and the pain for another day. and it will come. still lia trusts me to make it all right, to keep her safe. while i am grateful that she still does so, i know that the day is coming when she will look in distrust at my face as they draw yet another sample from her and i am helpless to do anything to comfort her.

yet another trip

we made the trip to boise again, it's the 4th doctor's visit, i think, in as many weeks. our trips there are often uneventful, but tiring. i wish that we could travel for fun sometimes, instead of always to boise, and always for doctor's appointments.

dave dropped lia and i off at Children's and then took himself and zaya to the RMH to get unpacked in our room. lia and i waited and waited. there were other children running around, so i didn't feel good putting lia down to crawl around. so i held her, and we waited. while we waited to see Dr. C, the nurse from the endocrinologist's office came to measure lia for me. i wanted to get her measured because her previous measurements at the pediatrician's seemed off to me.

either she was smaller than i realized, and she had dropped off her normal 50% curves down to below 25%, or they measured her wrong. either way, i felt better having them double check. so we measured lia and she was 28.5 inches long, 1.5 inches longer than the measurements taken last week. her head is 17.75 inches, 1inch bigger as well. so she not only had maintained her growth curve for length, but her head has come up into the 50% as well. the nurses all exclaimed not only over her size and progress, but her beautifully round and large head.

lia basked in the attention until she got a glimpse of someone's name tag. at this, she realized it was a doctor's office and she would probably be poked with something. she started wailing and snuggled harder into my shoulder. as i comforted her, i kind of laughed inside.

i never thought i'd have a baby who was so aware of what she was seeing that a small white square would make her upset. we went back to the waiting room with an order for a heel stick to check her thyroid levels.

after waiting for a while, we get into the room where we will meet up with Dr. C. it's a nice large room, and i wipe everything down again with the sanitizing wipes they have there. i'm sure that they've already done it, but i feel better doing so again. the mirror on the door is to the floor, lia happily begins kissing lia-in-the-mirror as if it's been too long since they have met. it has been, it's been since last night.

after apologizing profusely for having opened the door and hit my knee, Dr. C is incredibly happy to see how well lia is doing. that is, until i begin explaining the difficulties we've been having. he indicated surprise that lia was ever limited by altitude, and asked detailed questions about how she has been behaving. i tell him about the O2 at home and the elevation and the difficulty we're having in proving that her sats are dropping.

he places a call to a friend in McCall, ID and explains the difficulty. he asks them to check lia's sats tomorrow in the hopes that we can prove something is going on. i think we are going to drive to McCall.

Dr. C also suggested checking lia's iron levels and hematocrit to ascertain that there is no underlying anemia. i'd love for this to be the problem. anemia can affect oxygen absorption, and is easily fixed with some added iron to the diet through supplementation.

giving back

for each of the 68 long dark nights i would stay alone at the RMH, i would dream of these kinds of moments. i really do believe that they had a strong part in making this dream come true. tomorrow we head back to stay with them again as lia has appointments and testing done to see where we are going from here. since that long stay at the RMH, i have been back many times to stay while lia has appointments, and i am sure that there are many more stays in our future. this time i am bringing some bags of lia's clothes that she has either outgrown or was unable to wear due to her health issues. i don't have much to give, but i want to give.

many of these clothes were given to us by people who cared about lia. i hope that they don't mind i'm sharing them forward with others. it makes me happy to think some other loved little girl will wear these cute clothes. that some other little girl who had a hard time will at least have something to wear that is not worn and stained.

the RMH of idaho has given so much to so many people. each night costs a family $10 to stay, but no one is turned away due to inability to pay. we were one such family. the sudden need to stay in boise overwhelmed us. at first we stayed on the NICU floor in the family rooms because lia was so incredibly fragile and critical, but eventually we had to move somewhere a little more permanent. the social worker set it up for us, and dave checked it out.

he told me how nice it was, he told me i would like it. at first when i got there, i hated it. there was no lia, no dave, no zaya. just an empty crib in the room, and myself with my thoughts and self-hatred that i wasn't still sitting with lia. i resented every moment i needed to have away from her, sure that God would find fault with me for leaving her. as my stay stretched out, i began to see just how much people gave to the RMH. i began to see the kindness and desire that the staff had to bring any measure of joy into a family's life while they walked a hard road.

they made christmas for zaya, they saved him special treats. and i felt unworthy of such kindness. it costs the RMH $120/day to staff the house for one family. so now we eat at Mc Donald's when we have a bit of spare cash. it may be junk food, but it is a genuine charity that they provide for families. i put change in their boxes at the restaurant, and i go through our clothes looking for things to donate, and i try to think of ways that we can give back.

if you don't have an idea of where to donate items this christmas, consider your local RMH. they are not picky about what they could use, even an extra package of toilet paper, a box of cereal, or granola bars is appreciated.

cord escapee

after a diaper change, we have a little O2 break. actually, lia wriggles away from me and heads for the windows any chance she gets. she pats the windows, growls at the dog and the tumbleweeds. i wish we were outside. i wish we knew why lia's O2 needs are increasing.

when we first got the O2 she would sat back up to 96 on .25L. now, she will only get up to 92 and sometimes 94. that may not sound big, but just remember that a healthy person is normally at 98-100 without effort. i am hesitant to put lia at .5L because there is a relationship of toxicity of oxygen to the lungs. so i keep her in the 90's and bump her up hen i think that she need it. otherwise, she remains on .25L. the ability of my body to metabolize oxygen is fascinating to me, and it doesn't seem fair. i'd gladly give my lung function to lia if it meant she could wander unencumbered by the cords. maybe her needs are not increasing, they are merely being masked by her inactivity.

since getting the O2, she becomes more active every day. i wonder how long this has been going on and i wasn't paying enough attention. some days it's hard to quiet the accusations in my heart. it is not helped by the mean and thoughtless remarks we receive about our care of lia. the perceived neglect, carelessness, supposed falsities, and other negative statements made towards our life are draining. it makes me doubt myself, it makes me tired.

a while ago

this picture is from before we needed O2 again, or at least before i figured it out. sometimes i wonder how long lia needed it before i noticed. i feel guilty, as if i have been so busy enjoying her that i ignored something crucial to her development and well being. then i get it together and try to stop worrying about everything.

i love where we live, especially because it is far from everything. our neighbors are kind and have roots in homesteading. i think this spills over into an amiable friendly kind of inclusiveness that still respects people's privacy. one of them called tonight. her son had the same surgeon operate on him last fall. it saved his life. now he is similar to lia in needing to be kept from exposure to many many things.

when we walked in and were introduced to her in-laws, she tagged onto the end 'this is lia, she is like L. no touching, and lots of hand sanitizer.' no one asked for clarification, there were just smiles and a general agreement that 'we are good at not touching!' i am sure that almost everyone knew of lia already. their church has been kind in praying for us as well as helping out when we haven't even known that we needed it.

so lia crawled around, zaya was ecstatic and ran wildly around with the kids. dave and italked with the other adults. we heard stories of the days this land was settled, promises of showing us where certain caves are in the desert, and lia crawled and crawled. it was like being in my parents' house filled with my sisters and brother. it was as close to normal as we have felt in a very long time. i hope we have chances for more of these kinds of normal again soon.

from here

the black pine mountains are hidden by the clouds. i love these kinds of mornings, odd, reddish, promising snow in the high country. lia, zaya, and i have been watching the tumbleweeds fly past us and speculating on their destinations.

tomorrow is november, the thankful month, and i'm thinking about thankfulness. today i am thankful that even though it's doubtful Medicaid will approve the O2, no one has taken it from us yet. we still have a chance to prove she drops her sats.

escape

south of us, the albions glimmer blue and white. the clouds are flitting by, zaya calls them horses, cats, and giraffes. they look like ships to me, racing by on important matters of the heart. each one carrying prayers, hopes, wishes, the breath of heaven farther along.

when the sky looks like this, i can't help wanting to get outside and play. until recently that has not been possible. when the sky looks like this, it is usually windy. the wind makes lia gasp really hard and she gets short of breath. so no playing outside. however, a recent photo shoot and a coupon, i was able to get an accessory for the Chariot. the jogger kit means that i can go on walks and lia is protected from the wind. i can feel fresh air, i can stretch my legs, i can breathe. it does feel really good.

here in the high desert, elevation and climate means that winters are windy and wet. however, bike trailers are handy in that they are made to keep out a lot of weather. i figure with a lot of bundling up, i can even take walks this winter on days that are not windy and too wet.

fences

we like fences, zaya and i are making them all the time with boxes, baskets, blocks, and cans. since we were just able to install our woodstove, we needed to make a fence around it. lia is just too young to understand 'hot', and oxygen flow is something that has become part of our daily lives. we made this one out of MDF and some 4x4 scraps. it was far cheaper than the heavy iron gates you can purchase. i think it's more fun, too. we're going to paint it with chalkboard paint and then we'll draw on it.

the first time we were given O2, i had to have a safety talk with the people supplying it. things such as: 'never keep O2 near an open flame', and 'don't smoke with O2 flowing', and other useful items were given to me in a serious tone of voice. if it hadn't been for the gravity of the situation at the time, i would have laughed. i was nervous, though, at that time, because we were getting close to finally bringing lia home.

this time? this time, i giggle. i'm so used to the safety concerns, the tubes, and flow.

and my mind can't help thinking:

• who heard of an infant smoking?
• or who would really be so reckless as to smoke while holding their child who was on O2?
• or let their child play near open flames anyway, let alone while on a flow?

lia's O2 sats today: high 94, low 82. most of the day we just keep her on it. every now and then i allow her to roam for a few minutes cord free, usually after a diaper change.

imp

there's a small part of me that i call my hidden imp. it comes out once in a while, when i'm happy and relaxed. i tease dave, i throw pillows at him, and tickle him.

i think lia has inherited this little imp, too. tonight she crawled over to say 'hi' to me while i was working on some pictures. so i snapped a couple of her goofy grin.

afterwards, i noticed that she had something in her hand. i noticed as she was transferring the item to her mouth. i said to her, 'what do you have in your mouth?' she grinned at me, flopped down on the floor and crawled away.

little imp, i love her.

taste

lia enjoys chewing on things that i chop for dinner. tonight, she saw the onion come out and got very vocal. she was waving her hands and squealing, so i figured it wouldn't hurt to try. honestly, i thought i would give it to her and she would be put off by the taste.

this didn't happen. i gave her a good sized piece and she placed it in her mouth. with much drool and a satisfied grin, she began to chew on it and suck on it, until i knew i would not be getting this piece of onion back to add to the pot. lia is truly my girl, i love the little bit of zip that fresh onion can add to a salad, or on top of lentils, curry, beans and rice, or even scrambled eggs.

i've stopped checking constantly and putting the O2 on lia. i think it's silly, and i am certain when i see the doctor next, that she will agree. why slow her down to check her when i know if she has been active that she is going to need O2 anyway. lia rarely stands anymore without a boost from O2, anyway. i don't want to slow her development.

i can only hope that this is a needing to get stronger thing, and not something else. even with O2, by the end of the day lia's hands and feet are often very dark purple. i rub them, i try to help her be still, when all i want is to have a conversation with dave that goes like this:

'i can't keep up with her! she's into everything and it's driving me crazy. what were we thinking to have 2? i need a baby gate!'

as it is, our conversations usually relate to how low she got today, how purple her hands are, and whether or not she did anything fun. i want to revel in the silly, the mundane. i want to be aggravated over normal things, like short naps, throwing food, fussiness and the like.

despite that, i am very aware of how gifted i am to have lia at all. if she needs a power cord to help her be active, then that surely is better than when she was super small and needed O2 to stay alive. it is better.

on the go

after a boost of O2, lia is on the go. i think that there must be a climbing gene, because both of our kids have it. every time i turn around, lia is trying to climb up to the window, putting her feet on the mirror and working the beginnings of a good heel hook. zaya was heel hooking the counter by 14 months of age. i hope that doing O2 will afford lia the same ability to develop and not slow down.

i'm looking forward to the future, one in which i go climbing with dave and our 2 climbing pals. zaya, and lia, lia with no more O2 needs. may that day come soon.

new reality

the new normal around here involves cords, and O2 again. after a good visit with lia's pediatrician, i explained what was still going on. we have ended up with a month's prescription of O2 and a pulse-ox to track her sats. so far, i've tracked her down to 83, at which point i stop and place the O2 on her. for now, we're supposed to place it on as needed. so i have to pay a lot of attention to her activity level and color.

since her ear infection cleared up, she has not had a repeat of the blue lips incident. her hands and feet do get dark after activity and towards the end of the day. looking at her x-ray up close, i can see the scarring and ground-glass look is still there. she has 1 full lung and .333 of the other, the right lung. her colon, liver, intestines, and stomach are all out of place due to the weakness of her diaphragm. it's paralyzed, and up to t-7, almost t-6.5. that's high.

the O2 agrees with lia. i put it on and she slows down her breathing, she breathes deeply through her nose. it helps her, i can tell. since wearing it, she has stopped sitting for 10, 20, 30 minutes at a time and playing. we are calling this her power cord. she is a different baby, pinker, olive, happy, calmer, active, in general a Normal Baby.

i hate that the O2 is back, i hate that we don't know what is going on. is it her activity? is this going to get worse? we're already at .25L, and that makes her a strong 93. up from 84.

answers, i just need a few of them, please.

finger food fiend

lia only eats so much baby food before demanding in a strident voice and signing 'more more more' to have finger food.

thankfully, there are Target brand puffs. mango, sweet potato, blueberry, apple, strawberry, and much cheaper than Gerber. i like budget items. i like feeding lia things that are good and cheap. making our own baby food allows me to spend on something fun like this.

self discovery

perhaps the best $20 we spent on a toy. it lights, it sings, it has a mirror. it can be a table, a stand-up toy, a lay-on-the-ground-and-kick toy. it's wonderful, and lia quite agrees.

on the good days, she will stand and stand at it. pushing the buttons, laughing when i sing the note back to her. she will spin the spinner with abandon. and she loves to look in the mirror. she smiles at it, kisses it, and thinks this little friendly hide and seek is all very very fine. i do too.

i placed her toy in the warm area, near the window-that-was-a-door. so the sun comes in, the puppy gazes fondly, and lia and zaya play with silly toys while i try to cook something useful in the kitchen. i'd much rather be playing. so sometimes i pull something leftover out of the freezer, count my blessings, and get on the ground to play.

heading up

towards the end of the day, lia is rarely willing to stand anymore. she is just too tired.

every now and then, though, she does. i am proud of her for trying, for continuing to push through the exhaustion and the effort it takes to breathe. monday we see the doctor again. i hope that there is an answer of sorts.