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.
good news from the cardiologist today!!
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.
i have only had the feeling two other times. once when i stepped off the plane with lydia. and once when i stepped off the plane with sarahjoy. it's like my body is going to collapse. as if my knees are going to buckle and i am going to crash to the floor. the strength is gone and it is all i can do to stand and take a step forward. the situation is so overwhelming my body can't quite handle all of the emotions and my adrenaline is going haywire. it's what i felt as i walked into the doctor's office today.
i wasn't expecting it. actually i have been feeling quite calm about the whole scenario and even driving to the hospital this morning i was not anxious. but as soon as i started walking down the hallway towards the door my body started screaming. 'this is too much.'
dr. mumtaz was wonderful. he walked in to the room and immediately crouched down to speak to sarahjoy who was playing around. he tickled her a bit and gave her a little plastic heart to play with. he was kind and gentle, which was a pleasant surprise. i had braced myself for a super smart surgeon who had less than ideal bedside manner. but i was wrong, thankfully. i'll take a great surgeon and great bedside manner any day!
the surgery is scheduled for 8:30am next thursday, february 10th. they will cut her from the top of her breast bone to the bottom, place her heart and lungs on a bypass machine (which takes over for the heart while it is being repaired), fix the hole, and then close her up. the surgery will be 7-8 hours. of course, there is a multitude of things going on in there that i can't even begin to innumerate but that's the basics. she will then go to the PICU where she will have more tubes coming out of her than she has fingers and toes. i am thankful i saw my mom after open heart surgery as i am at least a little bit braced for how awful she will look. as eric tells my mom, 'you were the deadest looking live person i have ever seen.' i am fully expecting to get that weak-kneed feeling again when i go see my baby girl.
sarahjoy will remain in the PICU her entire stay. they estimate discharge anywhere between 4 and 7 days. it varies depending of course on how she comes off the ventilator and all the other tube action going on and if there are any complications or scenarios that need further attention.
the doctor was a perfect blend of optimism and full disclosure. it is very rare in this country to see a two year old with an uncorrected VSD. so there is some anxiety among the heart doctors simply because her heart has worked so hard for this long. the anxiety stems from the reality that with a VSD there is too much blood being sent to the lungs, and thus sarahjoy could quite possibly have permanent lung damage ('pulmonary hypertension') which is a whole different, albeit related issue that we may or may not have to deal with. the good news is that right now they are not seeing any indicators of lung damage. but this is the big question mark. our doctor has decided that because of her age, he will aggressively treat her for pulmonary hypertension after the surgery, watch her lungs closely, and then make long term decisions once the body has settled into its new normal a few months from now. and consequently, the drug used to treat pulmonary hypertension is viagra. so i am going to have a good time sending eric to the pharmacy for that one. maybe i'll get him to pick up a pack of tampons too.
overall, dr. mumtaz was very positive. he said there was definitely a fair amount of robust conversation amongst the doctors regarding sarahjoy's case. bottom line, it isn't seen a lot. and quite honestly i think many of the doctors, who have not been exposed to third world realities, are thrown into a tailspin when they see her case. they cannot fathom why her VSD has not been fixed. dr. mumtaz is from pakistan and didn't seem to be at all confused as to why it hadn't been repaired. he gets that children (much less orphans) in the middle of nowhere china are not going to be high on the heart surgery list. and it's not that anyone has ever been critical of eric or me, they just seem to be dumbfounded that a fairly straight forward heart defect would not have been repaired. i wish i could take them all with me to see the realities of china's orphans, or just china for that matter. medical care is such an expectation in our country - we have no idea the blessing it is to live in america.
so that's the skinny (where in the world did that phrase come from?) we are praying, praying that sarahjoy will stay healthy. that's the #1 concern right now. i'll worry about the whole surgery thing on wednesday night. right now, we need all the germs to hang on to micah, lydia and josiah and not feel a need to jump ship.
thank you so much for your prayers. i know that so many of you are praying. please continue.
and i might add that there was an incident that included eric, a purple diaper bag, and intense words coming from his wife. that will be the topic of another blog post. i am afraid if i addressed the husband's absurdity tonight i might undue 13 good years of marriage...
tomorrow is a big day for us. we will meet with the cardiac surgeon (separate doctor from the cardiologist) at 9:30 and then do all of the pre-op stuff after that. they tell us we'll be there until 1:00 with blood work, x-rays, etc. we are anxious to know more details, and the ultimate detail of when exactly the surgery is going to be.
thank you so much for all of your prayers. our big prayer right now is that we have 4 sick kids. so far, sarahjoy is standing strong, but there are germs ready to pounce! the other 4 are on the upswing i think, but they have all been feeling pretty nasty with a variety of pinkeye, stomach bug and bad congestion and cough. they will not do surgery if she has even the slightest sniffle. so we are praying for God to put protection around her little body and keep her healthy.
we'll update tomorrow when we know more!
and now for the cutest little kid on earth in her purple converse...(and i promise her tights match even though they look rather gnarly in this picture!)
i would like to mention that i had a piece of pizza for dinner. and am now snacking on conversation hearts (that were purchased for the kids' valentine's cards, because you can't just have a plain card these days.) eric, however, is eating a salad and an apple. and this is why sometimes it is really annoying living with another person. you know, your flaws and weaknesses completely in your face. i even have to wake up staring at the salad and apple man. geez. (but, i had a diet coke)
and now, for take 5. kids, that is. 5 kids. and dare i say that 5 kids is more than a few. we have exactly twice as many kids as the average american sized household. and for those that say after having 3 kids or 4 kids, adding another one is easy? i think those people don't actually have that many kids. or else i'm doing something really wrong.
sarahjoy is a delight. in a two year old sort of way. she's cute as pie (although my pies are not that cute, i make much cuter brownies) and giggles and runs her tiny diaper butt around in the most adorable fashion. she smiles and her deep brown eyes disappear. her two little hands squeeze my cheeks and she lays her face on mine and waits for kisses. she adores her purple converse and insists on wearing them at all times. and she has now mastered her first english word, "uh oh!"
and then there's the not so cute two year old thing. for one, she poops in a diaper. which is just gross. she needs help with her food. she has to be buckled into the car seat. and unbuckled. she wants to be carried everywhere. her outfits don't just jump on her, and she has a penchant for dumping and running (toys, that is.) she needs me. constantly. and this particular person really liked the somewhat independent life we had trained our 4 kids to lead. things like not bothering mommy on saturday mornings. or going to bed at 7:00 without a fit. or taking a shower by themselves.
i knew life would be different with an itsy bitsy around. i've had four two year olds already (which i think has to make me some sort of expert.) but i would be lying if i didn't say that it's a big adjustment. just this semester, for the first time in 10 years, i had a few hours to myself when the little kids went to preschool three days a week. and i LOVED it (trust me, i was not the mama walking back to the car crying.) but alas, i am never alone now...and this introvert gets really tired of people needing me all the time. and climbing on me. and calling my name. one day last week i was sitting on the sofa with the kids all piled around. it was a norman rockefeller moment, except for me saying through gritted teeth, "please. stop smothering me. mommy needs some space." (repeat 10 times nicely) (and i must add that just after i typed that sentence eric sat down on the sofa and leaned up against me and i had to repeat once again...)
so we are working it out. the new normal. i am no stranger to introducing new children to the family and so there does come perspective with experience. i know that in time we will settle in to what works for us and that each little and big person will figure out what 7 people in their family means for them. for now, i am exhausted, a bit irritable, and overwhelmed. doesn't that make you want to be my friend? i feel like a big slob - i haven't been to the gym in weeks. i barely remember what i look like in make-up and i am not sure if i could have a conversation with an adult or not. in the 12 days we have been home i think i have gotten dressed 4 or 5 times.
and because i just think it's sort of funny, here is our schedule of the last 12 days...
friday - come home
saturday - urgent care for me (pink eye)
sunday - pajamas
monday - pediatrician for sarahjoy
tuesday - pajamas
wednesday - cardiologist for sarahjoy
thursday - pajamas
friday - micah wakes up with a fever and throwing up (pajamas)
saturday - micah throwing up (pajamas)
sunday - annaclaire wakes up with pinkeye, lydia wakes up with a fever (pajamas)
monday - I RAN ERRANDS!!!!! (not in my pajamas)
tuesday - josiah throwing up (pajamas)
wednesday - ???
i think i might have to get dressed tomorrow. micah is hacking and we're going on day 6. i think it might be time to see a doctor. because, of course, we have itsy bitsy who needs to stay HEALTHY so she can have OPEN HEART SURGERY!!! just a minor detail which occasionally takes up some of my energies.
so here we are. in all of our glory. but she is the cutest thing on two purple chuck taylor feet. (which i should follow this post with an incredibly adorable picture of her and her shoes. and that would make me the perfect blogger. but i don't have one. tomorrow...)