y'all get to look at my cute card so i can get a $10 credit to shutterfly! but it is cute, if i do say so myself. and fits perfectly into my plan to write thank you notes to those who were instrumental in bringing little SJ home. yes, mom, i have already written thank you notes once. but you know, i feel like people need to see and hear again just how much their gifts to us helped perform a miracle. God is so gracious to have given us little SJ.
y'all get to look at my cute card so i can get a $10 credit to shutterfly! but it is cute, if i do say so myself. and fits perfectly into my plan to write thank you notes to those who were instrumental in bringing little SJ home. yes, mom, i have already written thank you notes once. but you know, i feel like people need to see and hear again just how much their gifts to us helped perform a miracle. God is so gracious to have given us little SJ.
reading the 'letters to the editor' in wheaton's alumni magazine tonight...
the place God calls you to is the place where your gladness and the world's hunger meet. Frederick Buechner
eric and i celebrated our 14th wedding anniversary the other day. and over a scrumptious lunch we said to each other, 'you know, our life really isn't any different than we would have imagined it would be.'
true. in lots of ways. in most ways. and yet as i've thought about that conversation i've realized there is something that isn't so much what i envisioned. adoption. yes, we had always thought about adopting a little chinese girl. but i don't think i ever thought about adopting two. and i never imagined being so in love with the adoption cause. i think if you would have asked me about it i would have simply explained our desire for an adoption and it would have ended there. not this heart-pulling desire to help the chinese orphan. it has caught me by surprise and i am still processing what it exactly means in my life.
on several occasions lately i have been asked questions like, "if you could go anywhere in the world, where would it be?" or something along those lines. and the first thing in my mind, without any hesitation, is to go back to china to help in an orphanage. not only would i love to do that but i want that for all my children. i want them to see the plight of the orphan, to see where God rescued lydia and sarahjoy from. to be able to touch and smell and taste china (however gross that may be...) i don't care about luxury vacations or even exposing my kids to the great US of A. what i really care about is the orphan, specifically china's orphans, and providing an opportunity for my kids to become passionate about caring for God's precious children. and if you had talked to me 14 years ago, that is not where i would have placed my heart.
i probably would have told you i would have a great ministry with teenage girls. and well, that's not so much happening these days. nor do i have any desire for that to happen. at least not for another 7 or so years when i have a small group of teenage girls under my own roof!
and to be honest, i have no idea what to do with this relatively newly discovered, unexpected passion. yes, we have adopted two kids. but i don't feel like it ends there. what's next? do we actively seek to encourage other families to adopt? we've certainly been approached by some who are interested but no one seems to really be interested. maybe they need a gentle push from someone who has been there, who has the fire in their belly. do we save our pennies and seek to expose our children to china's orphans? i would love to take them on a trip with 'show hope' or some other organization that does orphan work. does our influence need to be focused on the next generation, and not necessarily those outside our familial boundaries? (wouldn't that be incredible for God to give our kids a passion for adoption and we could have grandchildren who were adopted from all around the world?)
or does it involve us personally taking the dive again to bring home another orphan? let's talk unexpected...this, my friends, is a thought that was completely unexpected 6 months ago, much less 14 years ago. if you had asked me before traveling to get sarahjoy if we would even ponder doing it again i would have given you an adamant no. and yet again i find myself in a swirl of emotion wondering if God is calling our family to something that is so crazy and unsettling it makes my stomach turn.
i don't know. in reading mary beth chapman's book, 'choosing to see', she talks about their decision to adopt and how she asked God for a burning bush. i fell asleep the other night with that as my prayer. please, lord, send me a burning bush. i need to know if this is from you. i need to know where to go with my passions. i need you to be clear. really clear God.
i have no idea where we are going on this journey. i would like to know. really would like to know.
God, burning bush. burning. bush. really. clear. i NEED a really clear burning bush! k?
i realize an update is long overdue. gracious.
sarahjoy is doing spendidly (love that word!) we were at the cardiologist's and the pediatrician's office last week and both gave her superb reports of good health. it's not an exaggeration to say that they were giddy at how well she was doing. i have to remind myself, because things have gone so well, that when we brought this sweet thing home she was SICK. as in REALLY sick. like doctors freaking out sick. i remember sitting in the heart surgeon's office and going through what was going to happen with the surgery. eric kept saying, "and what if that doesn't work...and what if that isn't successful..." until the doctor said, "well, then we would be looking at a double lung transplant which generally children are not candidates for so we would just need to make her as comfortable as possible."
upon which i took a deep breath and said, "okay, can we stop talking now?"
all that to say, our little girl was really sick and there realistically could be severe long term health implications for her heart not being repaired until much later. however........................she appears to be completely healthy!
she is growing like a weed. she has gained 3 pounds in the past month - that's just about 15% of her body weight. she has grown in height. and her two-year-old-ness is off the charts. all of which are indicative of a healthy little girl. as much as i frown upon fits and getting in to everything, it is a nice reminder that we are being a normal two year old. in fact, i was thinking on the way home from church today that she is always wanting to walk everywhere, little miss indepedent. which, one would argue, is pretty typical of the age. however, in china, she didn't want to walk anywhere. she wanted us to carry her all the time. at that point, i chalked it up to stubborness and/or adoption related issues. but i was thinking this afternoon that maybe a lot of that had to do with the fact that she was exhausted! her poor little body barely had enough energy for her to breathe, much less have energy to walk. i remember she would go a few steps and then stop. she didn't climb on anything and she certainly couldn't be described as being 'all over the place'. really, i think we were witnessing a miracle. our little girl shouldn't have been alive. but there she was, hanging on until mommy and daddy could come bring her home and get her healthy.
sarahjoy is doing great. she is a bundle of energy, into everything. she adores her brothers and sisters and her stuffed panda. she eats anything in sight. she wants to put her purple converse on and go out the door at any opportunity. she loves to play chase (inside or out!) she has particular amounts of fun when she finds a crayon or marker and no one is looking. i am fully expecting to have at least one piece of furniture ruined by her and am fairly sure i can count on her giving herself a haircut at some point. it is a different kind of challenge to have a two year old who hasn't been in my care except for a short time. things that i most certainly would have disciplined and taken care of by this age with the others are new experiences for her. surprisingly, i never felt that with lydia - she is my very compliant, soft-spoken, quiet little girl. she would and still does go off and play quietly with her dolls. she did get into some mischief but she wasn't as fiesty as the ol' sj. sarahjoy...not so compliant, soft-spoken or quiet. she is a maniac! into everything, constantly. most definitely keeps me on my toes and regularly reminds me - in case i forget - that we have a two year old in our house now. i would be willing to bet my house on the fact that sarahjoy is going to be our firecracker and there will be some significant explosions under this roof! a fighter, that kid. in more ways than one.
we are so thankful. this morning while i was getting ready and listening to all the kids scurry around i was marveling at how completely normal it seems to have sj in our family. she fits. it doesn't even seem weird anymore to have such a little one. it is our family. and i love it. you know, i would love to adopt a treasure trove more. because adoption is an amazing blessing, a miracle, a God thing. and i love being a part of that. i love having miracles staring back at me everyday. i love having a world perspective right under my own roof.
i love getting a stomachache when i see money being spent lavishly because i have two little treasures that are pictures of how that money could truly do something to change the world. i love that i do have two little treasures and they have changed me.
i am pondering what to do with that change. it's like going on a trip to see the third world, how the 'others' live, and coming back to the comforts of home and feeling a bit, or more than a bit, uncomfortable. and you don't quite know what to do with what you've seen. how to process that you have a closet full of shoes and so many have a pair of shoes, or none at all. except, my trip lives with me. the memories don't fade and i can't forget what i saw. i see their precious faces every morning. and when i see them, i see thousands of other little treasures who need families. and what do i do? we can't keep adopting. we don't have the resources - financial or emotional. and quite obviously, even if God were to lay it on our hearts for another one (which he hasn't at this point, don't y'all go freaking out on me,
although i'm not ruling it out) that doesn't begin to touch the thousands of orphans i can't bring to my home. but maybe i can do something bigger. be a part of the adoption journey for others. be an advocate for those sweet faces.
The Butterfly Foundation. makiah loved butterflies. and butterflies symbolize new life. hope. ......in the very beginning stages of thought. but it's there, rumbling in the back of my head.
so, back to what this post was supposed to be about. sarahjoy!!! she's fabulous. your prayers, God's mercies, and a few amazing doctors. from all that we can tell, she is 100% healthy. she will continue on her medication; the doctor will keep her dose steady while she grows so she will essentially be weaning herself off in the next few months. and then after 4-6 months they will completely stop it. all the while monitoring her heart and lung pressures. after that, we're done! of course, we will continue a regimen with the cardiologist to keep an eye on things but will be done with any treatment of a heart condition.
God has been very merciful to us. he is always good, but life does not always go the way we would like for it to. even still, God is good. so i refuse to say, "sj is healthy! God is good!" because truly, even if she were not healthy, God is still good. but for now, he has bestowed his mercies on us and we have been the recipients of a great gift. we are immensely thankful. and we are enormously indebted to those of you who have faithfully prayed for sarahjoy and have given to her little life. you truly have been part of a miracle.
she is all we dreamed of.
|this girl loves to be outside!|
|super big sisters annaclaire and lydia|
|sj's three favorite things - the doctor, chickfila, and panda|
and to finish our list of 60...
- i am thankful for mrs. whaley's english classes who have prayed faithfully over the last few months
- i am thankful for a dad who has thoroughly embraced our crazy adoption adventures (after a bit of a pause...)
- i am thankful for little tiny rocking chairs for little tiny girls
- i am thankful for pajama pants
- i am thankful for a person in florida who i have never met who sent us a check
- i am thankful for a loving birthmother who placed sarahjoy in a safe place before saying goodbye forever
- i am thankful that i can walk in the room and sarahjoy instantly stops crying
- i am thankful for chili's (english classes...why is there an apostrophe there?)
- i am thankful for a heart that kept going despite being twice its normal size and completely overworked
- i am thankful for xrays so we know what's going on in her lungs
- i am thankful for pizza gift cards
- i am thankful for people who i meet for lunch and hand me money
- i am thankful for a one pound weight gain in one week! (for sarahjoy that is, not me, although i'm running a close second...)
- i am thankful for antibiotics
- i am thankful for great friends who invite themselves over for dinner
- i am thankful for hot showers
- i am thankful for college kids who love our family and babysit for free over spring break
- i am thankful for sarahjoy's cries, even if they do last for way too long at naptime
- i am thankful for disposable diapers
- i am thankful for full nights of sleep (what are those again?)
- i am thankful for consignment stores that give me money to pad my clothing budget
- i am thankful for weekends
- i am thankful for PBS kids
- i am thankful for sweet tea
- i am thankful for PICUS and IV's and breathing monitors
- i am thankful for family reunions
- i am thankful for a praying, God-fearing Mimi who has lived to see an enormous return on her investments in her children
- i am thankful for two little twin sisters of Makiah that fill their mom and dad's arms again
- i am thankful for josiah, annaclaire, micah, lydia and sarahjoy for being the cutest and most amazing kids any mom could ask for
- i am thankful for eric who hands down is the best father and husband a woman could ever imagine
|missing our little itsy...a new family pic is coming soon! but dang aren't those kids the cutest!|
so many things about sarahjoy's journey are reasons to be thankful and proclaim God's faithfulness. in honor of the 60 days she has been with us here are 30 things i am thankful for (people, i cannot think of 60 good ones tonight, operating on about 4 hours of sleep!)
- i am thankful for God pricking our hearts for adoption.
- i am thankful for God providing every penny for us to travel to china.
- i am thankful for a brood of loving children who have embraced their new little sister like she has been here forever.
- i am thankful for friends who have been spoiling us with delicious meals.
- i am thankful for a pediatrician who noticed the need to get us to a cardiologist.
- i am thankful for an amazing surgeon who i think would take sarahjoy home if he could.
- i am thankful for a children's hospital that is literally 20 minutes from my door.
- i am thankful for nurses and doctors who don't freak out when a child quits breathing.
- i am thankful for a mother in law who went above and beyond in caring for our kids for three weeks.
- i am thankful for a husband who has set aside getting to work early and instead has been going in a bit later in order to get the kids breakfast every morning.
- i am thankful for naps.
- i am thankful for a little girl who loves to kiss me and give me hugs, even though she's only known me for 2 months.
- i am thankful for a mom who could be beside me during the most harrowing 30 minutes of my life.
- i am thankful for a comfortable home and plenty of stuff to make life easy.
- i am thankful for the multitude of people who gave sacrificially to bring our little girl home.
- i am thankful for china who allows us to adopt their precious princesses.
- i am thankful for a church family who has prayed faithfully for sarahjoy and loves her to death when she walks in the door.
- i am thankful for health insurance.
- i am thankful for a government that allows me to heat my home if i so choose (which i do, to a nice comfy 70 degrees)
- i am thankful for warm cozy blankets to snuggle with while i'm laying on the floor of sarahjoy's room.
- i am thankful for a little girl who loves to nestle right up to me when we're in bed together (which currently is way too often, but i'll still be thankful.)
- i am thankful for the family who has lent us their car for the past few weeks while my mother in law was here.
- i am thankful for our adoption agency who provided a seamless adoption process.
- i am thankful for president obama and his new laws about adoption expenses and tax refunds.
- i am thankful for completely unexpected gifts towards sarahjoy's medical expenses.
- i am thankful for babygap gift cards so sarahjoy can at least have a couple of things to call her own.
- i am thankful for husbands who love me in spite of an ever increasing waistline thanks to a plethora of stress lately.
- i am thankful for cameron and rachel who allowed us to name our little one sarahjoy makiah so we can always remember that little blond angel.
- i am thankful for people who gave us change from their piggy bank and people who gave us $10,000 and every one in between.
- i am thankful for sarahjoy.
i have been avoiding writing a post. i suppose because i feel like there is nothing dramatic going on. no one has stopped breathing. we aren't teetering between life and death. we are doing the daily routines. figuring out life.
and it is hard. i know that a lot of you are silently saying, "i told you so!" but i am ignoring you. and i have many things to say to that sentiment but i need to be thinking a bit more clearly.
we knew it would be hard. it is no surprise. i have welcomed four children into our family and every time it is a big adjustment. the fifth is no different. for those people who say, "once you have three, another one is no big deal," well, i just don't think they have actually done it. or they're lying. because with every new child comes more work and more responsibility and less time and less energy. and with every child there is more 'MOMMY!!!! I NEED YOU!!!!' and less time to give to each call for attention. it's a balancing act and it takes time to figure it all out. but it's hard.
sarahjoy is a miracle, let's not forget that! but she is also two. and quite spoiled - given that she has had my undivided attention essentially since we first held her in china. barring a few days of regular family life before surgery, she has been my primary focus. and she is really not happy when she doesn't have me all to herself. she does not like me doing anything that doesn't involve her being within 12 inches of me (including sleeping) and she certainly doesn't like me snuggling with her brothers and sisters! she obviously doesn't speak english, and i don't know that she really speaks chinese either. i think most of it is baby babble. but she refuses to point or gesture and instead stands and whines. a pointing finger would seriously be the best gift from st. patrick i could possibly imagine (if in fact ol' pat gave gifts.) meanwhile, i get to play the game of figuring out what in the world she wants. hungry, thirsty, a toy maybe? does your incision hurt? is there something else going on medically?or maybe your two year molars? do you need something else i'm not thinking of? or...do you just need me. thankfully, my mother-in-law has been here and has been a LIFE SAVER. but she leaves tuesday and i have this crazy life all to myself. help!!!!! how do i do a whiny two year old, four other kids, a husband, and a household?
so come tuesday, i may be a puddle on the floor. and if you can't find me there, check the closets. or the local chocolate shop. i may have run away. i'll come back, though. cause i have to have a chat with all you i-told-you-so peeps.
on behalf of all the people who have said it before, either to our face or quietly discussing it when we're out of earshot (and there's a lot of you.)
and that's about all i have to say today. driving me nuts.
good news from the cardiologist today!!
sarahjoy's heart looks great. the surgery was successful in closing the hole. we will continue to monitor every month to keep an eye on the pressures. which is the big question mark because her defect was not corrected until she was 2. right now, the pressure on one side of her heart is 3 times higher than the other side. over time, with a healthy heart, that pressure will hopefully subside as the lungs recover from being overworked the last two years. she is on medication currently to help with this, and will continue for the forseeable future. but all of that is no surprise to anyone and is 'normal' for her situation. overall, things are good.
her left lung is still a bit junky. we will have a chest x-ray next week before our surgical follow up and they will take a look at the lungs. again, not a surprise there but they want to keep an eye on it.
i did ask about her non-silent, non-rhythmic breathing while she is sleeping. there may be some sleep apnea going on which we can address after we get through this initial heart stuff. i asked the doc generally about what i was hearing. eric cut to the chase for me and said, "basically ashleigh is wanting to know if sarahjoy is going to die in the middle of the night." nothing like being totally forthright and getting right down to my fears! the doctor's response, "well, we don't tend to see that sort of thing happen." not exactly what i wanted to hear but eric reminded me that a doctor is never going to say never. true, good point. we are going to try and get her on videotape during the night to bring to our next appointment. and if he feels like it would be a good thing, we will do a sleep study and see what's going on. i don't think this has anything to do with her heart issue, but i am not sure on that one.
her incision is looking fabulous. i'll have to take some pictures and post them. it is pretty amazing. obviously it is major scar, but it is looking really good. and speaking of pictures, our camera decided to quit working but as soon as i get that worked out i have got to get some pics up here of our beautiful smiley little girl!
God has chosen to give us a great blessing in bringing sarahjoy home (debt free) and allowing her to be healed by modern medicine. why he has chosen to bestow on us tremendous favor, i don't know. but i want to be clear. he has done this for us. this whole sarahjoy journey is not of our own doing. this is a God story. he alone could have orchestrated all of these events. he alone could take an abandoned baby girl in the middle of rural china and place her in a loving family on the other side of the world at just the right time for successful medical intervention. and he alone could provide every dollar that was needed. and he alone could give her breath again. and he alone has her life in his hands. we are thankful and we treasure her with everything we have. but ultimately, she is God's and her story is about Him.
she is beautiful. her eyes light up when she sees her daddy. and disappear when she smiles. her grin would melt the hardest of hearts. she is our treasure and tonight we thank God for his gift to us. for our treasure.
every once in a while life brings you an event that changes your perspective, gives you a new outlook on things you otherwise might pass over. maybe even changes who you are. rarely is it anticipated. it comes. and the days tick by. and it may go. but life is never again the same.
i was watching as my baby lay lifeless on the bed. moments ago she had been fine. we were a day out from surgery and i was stroking her midnight hair as she lay peacefully recovering. all her monitors said she was doing great. and then in an instant there was nothing. no movement. the nurse began to shake her. 'breathe, sarahjoy, breathe!' there was no response. i watched in horror as my baby slipped away. there was no warning, no indication anything was wrong. her body simply stopped. 'sarahjoy! mommy is here! BREATHE!' as they swarmed the bed i moved to the corner. by this time my mouth screamed and my cheeks were flooded as i watched. i could still see my little girl, in between the bodies of the nurses and doctors attending to her, but there was no life. no breath.
i cried out. 'this isn't supposed to happen! she's dying! she's gone! we should have never done the surgery! my baby!!!!'
i don't know how long they worked on her. maybe 30 minutes before the medical staff began to disperse. before my cries subsided and i began to sense that this wasn't the end. i remember walking out of the PICU, down the hall and wondering what in the world had just happened. i took my sweatshirt off and put on a tshirt. i was sweating. my body felt like i had run a marathon. i was exhausted.
and now those minutes haunt me. i close my eyes and there she is again. laying there breathless. six sets of hands working to bring my princess back to life. i can't sleep. i walk into her bedroom, trying not to panic, but scared that my nightmare is reality. i check for her breathing. i lay beside her and watch her chest go up and down. i listen. it all sounds good. but it sounded good before. and then it was bad. really bad. i'm scared.
those 30 minutes have changed my perspective. they have changed me. and not the least of those changes has been my renewed and incredibly deep sympathies for my sweet cousin rachel and her husband cameron. who can never open their eyes and wake up from their nightmare. they will never walk into their little makiah's room and be able to see that she is okay. my heart breaks for you in a whole new way.
we see the cardiologist tomorrow for our first follow up visit. maybe then i can gain some peace.
***for those who have been following rachel and cameron's journey, their baby girls were born last tuesday! abigail kaitlyn (6 lbs) and alena kaitlyn (4.13 lbs) were healthy and went home with mom and dad on friday! the family continues to grieve and miss makiah but is thankful for full arms once again.
home is surely sweet.
we are all back as a family. sarahjoy has now spent almost equal time with us in china, at our home, and in the hospital. so needless to say, she is still getting adjusted. poor kid doesn't know where she belongs. but she does know who loves her. and her little smile is bright and beautiful these days in my arms. i even got a few giggles today.
she is doing great. i have to admit it is a bit unnerving having her home and knowing that it is my responsibility to tell if something is wrong. last night she slept with me and i spent most of the night listening to her breathing. when it was loud, i wondered if i should call the doctor. when it was quiet, i worried she was gone. i didn't get much sleep. it's her heart for crying out loud! talk about stressful.
we will see the pediatrician tomorrow to check on her pneumonia. hopefully that's all that will happen. i am still so nervous about something going wrong and us ending back in the hospital. we see the cardiologist on monday and the surgeon the following week. i will be thankful when we get the all clear from the three of them. or at least i am hoping we get some sort of all clear or else i am going to need some blood pressure meds. although, we've maxed out our insurance deductible for sarahjoy for this whole year already, so i say bring on the doctors and all their expensive tests - they're free! : )
life will get back to normal. right? at least our new normal. i am anxious for that to come. i feel so out of sorts. with the holidays coming right before we left for china i feel like i haven't really been in a good routine since the fall. because of us 'sequestering' sarahjoy prior to her surgery, i haven't even been to church since christmas eve i don't think. even this introvert is ready to see some of the outside world! trying to take one day at a time knowing that one plus one equals two and then four and then maybe a new normal.
thank you so much for your continued support. we are incredibly blessed.
tomorrow is going to be a fabulous day!
sarahjoy is slated to walk out the doors around lunchtime. she is doing great, they even took her off oxygen tonight. the only thing left is one measly IV in her hand. she will get an xray and an echocardiogram on her heart tomorrow morning. assuming all of those things are good, we are driving home!!!! (and lord help me if they are not good) she has not had a fever at all today or tonight and everything points to her moving along to complete healing. we will go home with a bag full of drugs and innumerable follow up visits but hopefully no more PICU!
she is definitely feeling so much better. she was a bear today - wanting to get down, arching her back, throwing fits. you know, acting like a 2 year old cooped up in a hospital room. they took the oxygen out of her nose around 7:00 and from then until 11:00 she did not stop babbling. i don't know what it was about the oxygen but it must have had some affect on her talking because she had been almost silent until tonight. and then the kid would not be quiet! carrying on like crazy. FINALLY, around 11:00 she fell asleep. but she was so happy and talking away - as much as i wanted her to fall asleep it was pure joy to hear her and her cute little voice babbling on about who knows what. i wish i knew what her little mind was thinking.
and............my sweet cousin rachel is having her babies tomorrow!!!!!! alena and abby will enter the world around 1:00 tomorrow afternoon. we are expecting them to be tiny but healthy. and i am so excited i can hardly stand it. God has certainly allowed them to bear a tremendous burden of tragedy and grief these last few months; i am praying that joy would come again when they see those little girls. please pray for an uncomplicated delivery and healthy little girls!
come on tomorrow!!!!
|getting some good snuggles with daddy (and look how long my hair is getting!)|
okay day today. sarahjoy spiked a fever in the middle of the night which is not good. however, she did not have a fever during the day and then about 7:00 tonight it was slightly elevated so that is possibly a step in the right direction. she was fairly cranky most of the day - i think she was probably in some discomfort and after finally figuring that out we gave her ibuprofen after which she was perky. i suppose the girl has a right to be in some pain after having her chest cracked open 10 days ago. i also think she is really tired of being there which shows up in some two year old fits every now and then. sometimes it's hard to discern what's a fit and what's true pain/sickness.
at this point the fever is the big question mark. no one knows exactly what is causing it. they are continuing to do blood cultures and nothing is showing anything. they have tested her urine and no infection is there. there is no sign of infection at her wound site. their best guess is pneumonia but for reasons i don't fully understand they are unable to say an absolute yes or no to the pneumonia theory. bottom line, there continues to be junk in her lungs that needs to clear up. and everyone's best guess is that is what is causing the fever. she is on heavy duty IV antibiotics so we are hoping we see some improvement in the next few days.
please continue to pray. we really want to see our china princess come home soon.
i am exhausted.
today is the first day i felt like i cannot do this anymore. i cannot take another week of this.
ironically, today was also sj's best day ever. but she has been so bad that even though she had her best day ever, there is still a long way to go. and i suppose that hit me like a ton of bricks today. she is so much better. but she still needs to be way better than today to go home.
her xray was improved this morning. not great. but improved. her fever was not as bad today as it has been. i begged them to give her tylenol because she is such a different kid when she has a fever - completely lethargic and blah. which they did this morning. but then they came back and said they would not do that again because they want to see how high the fever goes. which was thoroughly discouraging. on one hand they tell me she needs to be up and walking and eating to get better. but they won't give her tylenol and so she is not interested in any of the above! i thought about getting in their face and wagging my finger and giving them a piece of this mama bear mind, HOW ARE WE SUPPOSED TO BE PROGRESSING IF YOU WON'T GIVE HER STUPID TYLENOL????? but i refrained. i did get a little testy with eric regarding the tylenol because he has so much power over the doctors and their decisions. okay, he doesn't. but i needed to get mad at someone! (i think this is why they say kids' illnesses are really stressful on marriages...)
so we are taking steps forward. even if sometimes it feels like the doctors are working against me!
today also was a realization for me of how long term this thing is. i wish i could say we have done the heart surgery and we are done. put the jammie pants in the wash and say goodbye to the hospital. but there is so much else. and if i am honest, i let myself go to the place today where i thought i cannot do this. this is not what we signed up for. this was supposed to be a 'minor' special need. not only are there innumerable follow up visits over the next 12-18 months but there is also a real risk to her heart and lungs if she should even get a cold in the next year while recovering. bottom line, her heart and lungs need to stay away from any additional stress. so i am looking at trying to keep her well for the next year which is so completely overwhelming i cannot even think about what that looks like.
and, the biggest reality of today. because of sarahjoy's enlarged heart over the last two years (it was TWICE the size of a normal heart) her breastbone has grown in a domed shape in order to accommodate it. i was hoping that it would just go away with the surgery but we were told by the doctors today that it won't. in all likelihood what will happen, although her heart will eventually go back to a regular size, is the breastbone will continue to grow abnormally and cause a somewhat disfigured looking chest. once sj hits the tween years when her body starts developing and breast tissue comes into the picture it may be disguised some. and as the muscles enlarge and pull on the breast bone the body may flatten it out a bit. however, there is a very good likelihood that she will have to have another chest opening surgery where they insert a metal rod to reshape the breast bone. when that surgery happens, i don't really know. the good news is that there is a world-renowned clinic here at this hospital that operates on that deformity, known as 'pectus.' the bad news is that truly our little girl will not be completely normal looking. does she care when she is two? no. but her mama cares. and she will care. in fact, i really care. i can't lie. it really bothers me (insert major tears here.) people can tell me all they want about how wonderful we are and that sj is a miracle and all that true stuff. but this mama doesn't like it any more than any other mama that her little girl is going to have to deal with something that makes her look different. at this point i don't even care about the surgery. i just care about my little girl's heart and how she is going to have to deal with being different. and how bad is it going to look and will people constantly ask about it and what will it do to her self-esteem............
i am exhausted. i am physically and emotionally wiped.
i am scared to hope, but maybe today we turned a corner.
sarahjoy was doing great this morning. during the night they took all of her monitors off except her oxygen so she is almost wire free. when i got there she was up walking around, playing and looked wonderful. she did throw up which we still don't know what that is related to - i.e. food, medicine, vests of torture or all of the above. but overall she was looking much better than she has been. her xray from this morning wasn't super; it looked about the same as yesterday - i am choosing to take that as a good sign that at least we aren't getting worse!
around lunch her fever went up again and she was miserable. they have now ordered tylenol to be administered more often which i think will help us to stay ahead of the fever. it seems that once it comes on (with a vengeance) it takes awhile for her body to get rid of it. and she is completely mopey and miserable when she is feverish, which she was for the whole afternoon.
however............this evening her fever subsided and she was amazing! she ate dinner like a champ (and kept it down) and she was acting like an ornery two year old. which although it was wearing me out (ornery two year olds and hospital rooms are not a good combination), i was glad to see! when it came time to put her to sleep i cradled her and assumed she would lay down like every other night. but oh no, she wanted to play. so i let her get down off the bed and she played on the little mat for awhile. it was a bit surreal for me to be watching her refuse to be held and not want to go to sleep! eventually she settled down and i rocked her to dream land. but for a few hours tonight i could actually picture us taking her home.
the two things that need to happen are a) her xray to clear up (and thus her fever to disappear) and b) her to eat and keep it down. i will be really curious to see what her xray shows tomorrow because it sure seems like she has progressed a whole bunch. and maybe, just maybe, she will eat more tomorrow. the word today was hopefully we could be home at the beginning of next week. i am putting absolutely no stock in that guess, i even told the doctor to quit saying things like that. but we'll see.....of course, that's what they said last thursday too. : )
and for the record, she was a royal pain in the butt when it came to medicine taking today. hoping for a better day tomorrow on that front also!
|feeling pretty good|
|"i am so OVER this hospital thing!"|
not one day did i ever imagine us being in this scenario. i guess i thought that if things were going to go south, it would be during the surgery, not in recovery. but we are here - going on day 9 in the PICU.
speaking of being over it, sj is hilarious. every time a nurse walks in the room (which is a lot since there is one nurse to every patient and the kid has something going on every hour at least) sj gives them the evil eye. and then she closes her eyes and just stays really still hoping they will go away. she'll open them, see the nurse, and then quickly close them again. she does not like any of those people with stethoscopes around their neck. and she cries every time they put a finger on her, whether it hurts or not. she is so tired of being here. and it is getting very weary having to watch her be so sad.
a lot of people ask how i am doing. i suppose the answer is, okay. i am getting good sleep at night - most of the time i stay at the hospital in a sleep room that they have for PICU parents. but it is exhausting. i don't know how these families do it that have sick kids for lengthy periods of time. sj is pretty 'demanding' in that i am constantly entertaining or cuddling or consoling or
as much as i get frustrated at our situation, i can't help but be thankful. there is a little boy next to us who just had surgery for a brain tumor today. there is a baby boy who will be heading to heaven any day now. yesterday you could hear his family wailing. there is a teenage girl who was hit by a car last week and is laying in bed with a million machines hooked up to her. and those are just the stories i know. there is so much pain and tragedy going on all around us. i have to block it out when i walk to the bathroom. i just can't go there right now. but i am pretty sure my mind will wander to those beds and to the PICU unit for the rest of my life. you can't help but be changed.
thank you so much for your continued prayers. we need them, constantly. i will continue to update as best i can. but know that we are immensely grateful for every prayer that goes to Jesus on our behalf.
|sj and the vest of terror. i am not even going to comment on what i look like.|
|"seriously, mom? you told me my new life was going to be great. not exactly living up to my expectations."|
grrrr, i am so annoyed. i just checked facebook and only half of my updates have posted from my phone and NONE of the pictures have posted. i am so sorry - i thought i was at least updating you via facebook.
happy valentine's day to me! i am home for the night...our little sweetheart had a good day and she was sleeping soundly by 7:00 so i decided to run home for a night in my own bed. but i have to say, i am so frustrated that i have not been able to update frequently because there is so much going on. i have got to figure something out.
here's the rundown...
sarahjoy is doing good. not great, but good. and that simply means that she is stable and we are seeing small improvements each day. she is still in ICU, she is still on oxygen, she is still a sick little girl. but we are moving in the right direction.
i feel like our goal is slowly shifting from keeping her alive to getting her home. hasn't shifted completely, but we are tipping the scales towards home. today she was more alert than she has been. we got her up twice to get out of bed. she took about 10ish steps and then promptly sat down in the floor. and there was no way she was budging. we picked her up and carried her to the beautiful playroom they have for her to be able to sit up for awhile. the first time she wasn't interested in anything. looked around for about 10 minutes before we brought her back to the room. the second time she did actually play with a couple of toys. watching her play reminds you of how frail she is. she slowly moves her little arm and shakes when she is trying to do something. she won't move her other arm because it is full of IV's. and she doesn't move except for her arm - the rest of her body is completely still. she hasn't really given us a smile yet and her eyes are still very sad. but i can tell that she is more comfortable and one day soon i am going to get a smile!
right now we have a few things that need to happen. she is still on oxygen. it was turned lower today and we will see what happens. when we have done this before that is when we go to crisis mode. and i can really go without another code blue baby not breathing episode. i think that took about 10 years off my life. they will try to slowly lower it over the next several days. this is a very specific prayer request....that she does not have to go home with oxygen. there is a good possibility right now that she will. but i am really not excited about having a two year old with an oxygen tank.
another specific is that she needs to be able to eat and drink. today was a start. she did keep some diluted apple juice down which we are giving her via a syringe. and late afternoon she ate a little cup of applesauce and some cheerios. we are moving in the right direction but we need to make sustained progress. the poor little thing is so skinny. she was skinny before all this and now she has had nothing to eat for almost a week. we are going to seriously need to work on her bird legs before bathing suit season.
she also needs to be weaned off of an IV heart medication (milronen for you medical people.) she cannot go home on this particular medication. she will certainly go home on plenty of things, but this can't be one of them. they have attempted to wean her previously but her left ventricle was not pumping properly so they put her back on it.
she also needs to have a clear xray. right now both of her lungs are pretty junky. they are much better than they were (her lungs are not fully collapsing, which is a great plus) but there is still a lot of stuff there that needs to disappear. having her up for a bit today will help. and having her feeling good enough to simply sit up will help too. which i think we may have reached the point today where she can sit without support. she did sit in my lap unsupported and watch almost all of toy story which is huge progress. xrays are done every morning (and more often if needed) so we should get a report tomorrow when we go in.
and last but not least, she needs to be up and moving around. we need to be able to get out of bed, walk to the playroom and be much more like a normal two year old. right now if you came to see her you would see that she is one sick little puppy. in fact, i forget to warn people when they come visit and it is pretty much instant tears when you walk in. i forget how alarming it is because i have been staring at it for a week. as much progress as she has made, we are nowhere close to being a normal little girl!
our little princess is in God's hands. and i am hopeful that his plan is for her to be a healthy little girl with a big huge story. we are praying.
i am simply sick about having all of you so out of the loop. you all have been praying so faithfully and i feel horrible that i have not kept you up to date. please forgive me and know that it is not because i have forgotten you. i am so thankful for your prayers. we need them desperately. our little princess still has some chapters to go in her miracle story!
here are a few pictures. progress is being made!
|sJ post surgery. she had so many tubes coming out of her but she actually looked better than we imagined|
|seeing my baby on a ventilator was not fun. i was so thankful that she was off of that so soon.|
a little perkier. no more ventilator and no more chest tube!
|my miracle valentine|
|sitting up and playing...major progress!|
i woke up in the middle of the night and thought, oh my gosh! we don't even have a picture of all of us together. not even one of all five kids! my mind was racing as i pondered the what if's and should the most awfulest of things happen. i wouldn't even have a picture of all of my kids together. and no family picture.
it's a good thing i've experienced a few social worker visits over the past few years. today was our first follow up visit. she was scheduled to come at 10:30. the last couple of weeks eric has taken morning duty and gotten everyone breakfast and off to school which has been such a help. i was exhausted this morning and so had been laying in bed playing with sarahjoy until about 9:45. at which time i decided i should probably get up and do something with myself. i was tempted to remain in my pajama pants but decided otherwise. mostly because i couldn't possibly admit to any outsiders that i had failed to get dressed to meet the social worker. i would have either had to lie to my mother or bury her. neither of which is an acceptable option.
so i pulled on a pair of jeans and headed downstairs. micah and lydia had been playing for a couple of hours without me so the place was a complete wreck. toys were strewn everywhere. blocks, tinkertoys, books, kitchen food, every toy you can imagine had been pulled out. but, you know, i didn't care. not sure that i shouldn't have cared, but, i didn't. (this might be a sign...)
i am dressed, with my hair pulled in a messy ponytail and not a stitch of make-up on. slurping on a bowl of cheerios. the kids are playing in a mound of toys that stretch far beyond the playroom. and it must have been "trailer park day" because the choice of outfits were amazingly similar to those you might see in such a place. micah had on sweatpants that were too big with his underwear hanging out. lydia had sweatpants and a shirt that looked like it had been balled up under her bed for a year. neither of them had brushed their hair so there was this matted mess in the back of their heads. sarahjoy was still in her pajamas (but had her purple converse on) and her hair was going in 107 different directions.
a knock on the door.
as if on cue, sarahjoy spills her bowl of cheerios she's been walking around with (note: walking around with food would never have happened with child #1-#4.) so now there are cheerios all over the floor when you first walk into the house. she starts to cry and i ask micah to please go pour her some more. he quickly obeys (with his pants hanging halfway off his butt) and poors some in her bowl . and pours the remainder of the box all over the kitchen floor. "MOM...i don't think i am a very good pourer."
enter mrs. jewel cooper, social worker lady.
toys everywhere. food covering the floor. sarahjoy is crying. kids are looking, shall we say, a bit questionable. in fact at that point i am fairly sure the stability of my mental state was questionable for the common observer. perfect for a reality show intervention. or maybe we could just be our own reality tv show.
but thank goodness that
i had enough dignity to apologize profusely and run around frantically for 3 minutes to pick up the mess i have been worn down to just a hint of my former self and didn't waste a moment worrying about it. of course, i sort of felt bad, but not bad enough to do anything about it. i am not sure if that is a good thing or not. sometimes it scares me how much i just let go. stuff i would have never allowed to happen 5 or 10 years ago. even 2 years ago.
the social worker came and left and didn't appear to have a problem. she laughed. and wrote a bunch of notes. so i suppose we'll see what those notes had to say. maybe they say, "warning. mother in danger of complete loss of control."
but i kept thinking about the whole scenario. i wrestle with my desire to do things vs. my ability to get them done. i would love to have a spotless house, or even a mildly clean one. i would love to cook healthy meals and always have a refrigerator stocked full of healthy food options. i would love to exercise regularly and get back my old self. i would love to just have some self-control and self-discipline! i would love to get dressed everyday and look decent. i would love to spend quality time with the Lord. i would love to be prepared when the social worker comes. i would love to bake fun treats for community group and not just a pan of brownies. i would love to welcome in friends with a homecooked dinner and not digiorno pizza. you know what i would love? i would love to wake up at 6:30 every day ready feeling energized.
but i don't do any of those things. at times i feel like a big failure. sure, i have 5 great kids and in so many ways we have the 'perfect' family. and by that i mean we have the family that is the dream of so many - happy marriage, healthy kids (well, almost healthy), great job, beautiful house, fun place to live. but i am lacking in so many of the other things. so many of things that really don't matter, but they do matter. i am frustrated. i am trying to tell myself, "you have so much going on. don't worry about it."
but i don't like how things are right now. and i can't decide whether i just need to let it go, or whether it's time to stop letting it go and get my rear in gear.
grrr. i'm just frustrated.