Saturday, December 25, 2010
this is my favorite day of the year. our sweet Savior has come and every twinkling light and decorated tree is celebrating it. happy birthday to the One who holds us close and knows our every step and loves us irrationally. the One who sacrificed Himself to save us. to be with us forever.
oh how He loves us.
may we honor You and bless You Lord. may our celebrations bring you glory.
we've had such a great christmas so far. you and daddy are taking a nap upstairs. i'm sitting in gigi's den with a fire in the fireplace, watching the twinkling christmas tree, and listening to christmas music playing in the background. and guess what else. i'm watching the snow fall while it decorates the woods surrounding gigi and grandaddy's house with white. it's a pretty big bonus since gigi and grandaddy's house is in georgia. i can't remember ever having a white christmas growing up, so this is lots of fun=) pictures and videos to come.
let's talk about charleston. i've been putting it off because it makes me very sad and scared to talk about it. but here we go.
on monday they told us that they saw stomach in your chest on the x-ray the day after surgery. i talked to dr gully who then called dr rodgers at uva. quick refresher: dr gully is my boss and your pediatrician. dr rodgers is the surgeon at uva that did your first 8 surgeries. dr gully told him what happened, what dr saad did during surgery, and what they saw in the x-ray after surgery. in a very diplomatic way he said if it were his child, he would get a second opinion at musc with dr andre hebra. we would basically trust dr rodgers blindly because we were with him for so long and we just love him. so dr gully called dr hebra and told him everything that had gone on and that dr rodgers pointed us in his direction. he sang dr rodgers's praises for a minute and said he was basically the guru of diaphragmatic hernias, which we already knew;), and that he could see us before christmas if we wanted. you were discharged from the hospital tuesday and we had an appointment with dr hebra in charleston wednesday at 11am. we we left at 6am and made the trek down i-26. he was super nice. so was his nurse practitioner. and the gyst was (again, in a very diplomatic way) that he obviously wasn't the surgeon in the OR with catherine and he wasn't necessarily saying dr saad made poor decisions, but just going on your history he would've done things VERY differently. which makes us sick. he said that the gortex patch wouldn't have pulled at the diaphragm and caused another hole, and that it shouldn't have been touched and should have been left in there. and that he didn't think your diaphragm could've grown enough in 2 years to have healthy tissue to be sewn back together, and he's concerned that whatever tissue dr saad did sew back together (scar tissue, maybe?) won't be strong enough to hold and that you might re-herniate every 6-12 months. and he's not sure if the hiatal hernia had been there for a long time or if it happened as a result of taking out the only strength (the gortex patch) your diaphragm had...meaning the gortex patch was taken out, the diaphragm got "loose" and the stomach slipped up into your chest. and that he still would've gone in through the chest instead of the abdomen. that if the stomach had already been in the chest, you would've been able to see it if you'd gone in through the chest. so again, he doesn't know if dr saad did everything right considering what he had to work with, but basically it doesn't sound like that's the case. so at first he said that as long as you're stable he wouldn't do surgery at all, that hiatal hernias can be perfectly fine and cause no problem, and he DEFINITELY wouldn't do surgery now unless he absolutely had to. buthe had us getanother x-ray when we let his office just so he could see what all was up in your chest, and when he got the results he called us and said it was much more impressive (not in a good way) than he expected and he would definitely have to do surgery on it. but again, hopefully after you're fully recovered from this one. i'm guessing that means about 2 months, but i also think i might have just made that number up. after he saw the x-ray he asked me to get discs made of all the x-rays they had done of you during the past week and mail them to him. which we did thursday morning. he wanted to look at the x-rays to figure out if the stomach was up in the chest before that last surgery, or if it happened as a result of the surgery, and he also wanted to make sure he agreed that it was only the stomach that was in your chest now and no intestines. and he said that after he reviewed all of those, he would call us back because he probably would get a CT of you to see exactly where the hole is, and what is where in your little belly and chest. they tried to avoid a CT at greenville because it's an outrageous amount of radiation, but it makes sense at this point that dr hebra thinks he needs one. they emphasized that somebody was on call 24/7 and for us to call if anything is worrying us or if you're showing any signs of bowel obstruction. it scared us out of our minds, to be honest with you. the drive back home from charleston was not so fun because i was just staring at you the whole time wondering if you were really ok. but we started feeding you through the tube again that night and it really has perked you up. we did end up coming to atlanta to be with our family at christmas (they said there was no reason we shouldn't come) and you're doing much better. more energetic and less pain and closer to normal. you're much fussier than you were before, and though you're still a sweet angel you're not quite as sweet as before. i guess i can't blame you-having people do painful stuff to you for 5 days straight will wear a girl out and teach you to be pretty defensive.
so we're waiting. hopefully we'll hear next week when dr hebra wants the CT and we'll know more after that. in the mean time, we're praying for no complications and no bowel obstructions and complete healing from the surgery at greenville. and this next surgery will perhaps be your biggest and most intense one so we're praying that all will go smooth with that. that it will be successful and your insides will be fixed for good and that you will recover quickly and easily.
so yes, we're terrified. and sick over the fact that maybe we should've gone to charleston to begin with. but honesty, we had no idea. we're trying to be thankful that you're recovering well from this surgery, that we seem to be in good hands now, and that we have dr gully to run interference in ways that me as your mommy just wouldn't have been able to do. let's talk about dr gully for just a minute. who could've gotten two surgeons on the phone that quickly and made things happen like that? she's really just wonderful. i don't know how else to describe how i feel about the fact that she is in our life. and i think she loves you like you were her own. i'm just so thankful. and no, she doesn't read this blog so i'm not looking for a raise here or anything=)
alright. onward we go. let's talk about christmas again. last night santa brought your surprises to gigi and grandaddy's house, since he knew that's where we were sleeping. so this morning we saw what he brought you and you opened presents from mommy and daddy. then we went to grandmother's house and had christmas over there. lots of fun seeing sweet family we don't get to see very often. tomorrow we will do christmas with both sets of grandparents and all of your aunts and uncles. so tomorrow is a big day! how fun=)
i love you angel. i am very sure i'm forgetting things, but i'll remember and tell you later.
Monday, December 20, 2010
today you got to start eating real food. and gigi brought you an elmo airplane that you've been riding up and down the hall giggling with joy=)
but that's the end of the good news for today.
dr saad called and said the post-op x-ray they took saturday night looks like you have stomach and some bowel up in your chest that must've gotten up there through another hole closer to your esophagus (hiatal hernia). they were trying pretty carefully to avoid that area during the first surgery, and that's why they didn't see it when they were in there. insert expletives here, if you're an expletive kind of person.
they're doing an upper GI in the morning to confirm all this and then move on to surgery to repair it either tomorrow afternoon or wednesday. and we start all over again.
things to pray for:
-that they really wouldn't use fentanyl this time, now that they've seen your reaction (i talked to sweet mary dillon, one of the anesthesiologists in virginia that i used to work with, and she confirmed that morphine would be perfectly fine to use. she also confirmed that the anesthesia provider that did your surgery and completely sent me into an outrage has no place taking care of you, much less any other child)
-that we are in the right place, with the right surgeons. your pediatrician/my boss talked with dr rodgers this morning and they discussed the possibility of a second opinion at MUSC. i desperately don't want to do this, but if i knew it was the right thing we would go there in a heartbeat. i'll talk with dr saad about that this afternoon when he comes to see us.
-that this surgery goes just as smoothly as the last one seemed to--with no chest tubes or ventilators or picu afterwards. and that you would recover just as easily as you have these last few days.
-the surgery flipping works this time and there are no other holes hanging out anywhere waiting to pop some bowel on up to your chest.
i love you sweet angel. i am so scared. and sad and frustrated. but mostly scared.
our sweet and hilarious friend caroline bedingfield suggested that daddy and i stay away from sharp objects and ledges. and i'm trying desperately to go numb, but that's virtuously impossible when you own my heart.
Jesus hold us close.
Sunday, December 19, 2010
you've had a pretty good day. they are, of course, worried about all your thick secretions you can't seem to get up. and i am, of course, wondering if any of them would like me to say "i told you so". i promise that is the only bitter comment i'll make=)
last night your sats were dropping a little because of all the mucous and it hurt when you would try to cough it up so you'd try to not cough...so we didn't sleep much. today you have been such a brave girl walking through the halls and going from toy to toy in the playroom and sitting on daddy's lap blowing party kazoos and drawing...all this was done with the goal of getting all the secretions up. and it's working! you're still pretty junky, but your sats are improving and you're tolerating all the movement better and better each time we get you out of bed. (you still fuss and say "mommy mommy! tummy hurting!!" while we're walking down the hall, but you're getting the job done.) all this movement has also helped your bowels kick into gear. you passed some gas earlier this afternoon and daddy and i started squealing and throwing a mini party in your room. so hopefully soon you'll be able to drink and if you do ok with that you can eat and if all goes well you're one great big step closer to going home!!!
i'm very proud of you sweet love. you've worked very hard today!
ps. (i like ps's lately, don't i??) a few hours have passed since i wrote that first paragraph...they let you eat some italian ice and jello and broth and guess what!!! you pooped!!! your colon is definitely spasming when you pass gas and right before you pooped...i'm very sad about that. but i'm so thankful your bowels woke up and are cooperating!!! it's funny that it's a very specific answer to prayer, but it sure is=)
here's a video of you right after surgery. we'd gotten you back to your room after recovery and were barely awake. you were pretty cute kissing everybody and your new turtle toradol.
Saturday, December 18, 2010
1) i'm feeling less like a raging lunatic.
2) your surgery went well and you're recovering smoothly so far.
3) the first is directly related to the second.
we left you in the OR at 2:15 and they called us to come see you in the pacu a little after 6. the actual surgery only took about 2 1/2 hours. dr saad sounded really encouraged when he called me from the OR when he was done. he's not the kind of surgeon that sounds encouraged even if things didn't go well, so i trusted it. they made an incision just below the old one (just below your g-tube) which is why it didn't take quite so long (going through a ton of scar tissue would've taken a LO-ONG time). he said the hole was about the size of a quarter and it was medial to the old patch (i understand that to mean it was basically between the old patch and your spine). he pushed your colon back down into the right spot and took the old patch out. then he sewed your diaphragm back together. this is important because it means your diaphragm has grown and is a normal size and was able to be put back together without a patch. and then he did sew his patch on top of it to reinforce the place where he sewed the diaphragm back together. here's some explanation of all that...2 years ago dr rodgers put in a gortex patch (it's the only kind of patch they had then) and a gortex patch stays there forever, doesn't grow with the child, etc, which means as the child grows, the patch can (and 60% of the time does) pull at the diaphragm which can cause another hole. for the record, dr rodgers is still, in my mind, on a ridiculously high pedestal...i don't blame him in any way...that sweet bushy eyebrowed man didn't have a choice in the matter...he did the only thing he could. but yes-thank goodness for new kind of patch that dr saad was able to use yesterday. the new patches are made of pig skin and it's basically like a lattice mesh work--over 3-6 months the diaphragm grows new cells that weave themselves through the patch to form new diaphragm and the patch dissolves in that time. so there's WAY less risk that the diaphragm would re-herniate after that. PLUS the fact that your diaphragm was actually sewn to itself and the patch was only used for reinforcement....it's great news my girl=)
when they stuck you for an IV in the OR your blood was super thin and like kool-aid, so they checked a hemoglobin which was 6.7 and a hematocrit which was 19. laymen's terms: they were both super crazy low. you were very anemic and your blood was very thin and it wasn't carrying around enough oxygen to your little body parts. this is almost positively because you were dehydrated and hadn't had much at all in your tummy for nourishment in the previous two days. so they gave you some blood before they even started and it made everything better. and then was the surgery which i've already told you about.
here are some other fun facts (understatement of the century) from surgery: they did a chest x-ray while you were still under anesthesia to see if there was a pneumothorax (hole in your lung caused by surgery) and if there was one he would've had to put in a chest tube. there was no pneumothorax and therefore no chest tube. he also thought you might have to remain intubated for a while after surgery just in case your sweet lungs were having a hard time. you did not have a hard time at all when they took out the breathing tube, so you didn't have to stay on a ventilator either=) both of these things were great to hear and it meant that you didn't have to go to the picu. you got to come back to your room that you were in before surgery on the regular pediatric floor. the picu wouldn't have been so bad-that didn't make much of a difference to me, but it WAS great that you didn't need a chest tube or a ventilator after surgery=)=)=)=)=)
all in all, this means surgery was a great success and that it went far better than we feared it might. again, i will try to keep this part short, but today you are in fact having some trouble because of the fentanyl-type drug they gave you during surgery, and it makes me want to go back and smack everybody who didn't listen to me. but i will refrain=) it's not lady-like. or Jesus-like. basically you just have really thick sticky secretions (mucous) that you try and try to cough up but the fact that it's so thick and sticky would make it really hard for anybody, even if they hadn't just had major surgery and an abdominal incision that felt like it was on fire. so you need to cough constantly and every time you cough you start crying because it hurts so bad to cough. but you're powering through.
i stayed with you in the hospital last night and you slept like a little angel. all was well until 8am and you went from peacefully sleeping to screaming the next second. "mommy! mommy! mommy! tummy hurting! tummy hurting! tummy hurting!" it was actually very cute. and heart-breaking. all at once. you were crying and hurting for a few hours and it took all morning but a little after lunch time the right combination of pain medicine kicked in and you've been sleeping soundly for a few hours now. i swear you are the sweetest little girl i have ever met. i can't even say that i'm being biased. when your nasal cannula comes out of your nose you try your hardest to put it back and hold it there until somebody helps you. what a good little patient you are. the first thing you said last night when you woke up a little in the pacu was "water" and "i'm better" and "i did it". and the occasional "tummy hurting". most definitely the most popular words coming out of your mouth today are "mommy" and "tummy hurting". makes sense to me. you are super clingy to your mommy and i am ever so willing to be at your beck and call. all you've really wanted all day is for me to snuggle next to you in bed and you keep saying "hold hands" and you'll reach around till you find my hand then pull it close to your chest and go to sleep. or keep crying and looking scared, however you're feeling at the moment. i like the sleeping better. i don't like you hurting sweet angel. but it will get better. and soon. they said when your belly wakes up your colon will spasm a little since it was up in your chest and that it will not feel good when it does, so we're not looking forward to that. but we'll figure it out. if your bowel sounds pick up you might get to have some liquids tonight and maybe some food tomorrow. IF your bowel sounds pick up and you pass some gas. you're usually very good at that. don't fail us now, sweet girl=)
every time any medical person (except dr saad and a few of your nurses) comes in the room, you look at me frantically and say "i'm better" or "i'm sleepy" because you think that will get you out of whatever they're about to do to you. smart thinking, if you ask me. i wish it would work.
you have a plethora of stuffed animals surrounding you in the hospital bed. your own little personal zoo. it's a habit that when you have surgery, we buy you stuffed animals. this time you've gotten a big fluffy snowman and a turtle (gigi named it theodore and daddy named it turdy, which gigi didn't like, so daddy came up with "toradol" instead. toradol is the pain medicine you're getting around the clock and we all are big fans. so "toradol" as your turtle's name is a happy compromise for everyone.) you also got a ladybug named lily that we get to draw on and wash off and draw on and wash off. pretty fun. that's the only real activity you've been interested in today. mostly you wanted mommy to color the hearts on lily pink and then you watched and colored your own nose with red marker. brilliant. just now you stirred around a little and reached over and touched my arm, looked up at me, and said "hi". oh there you go waving and saying "hi" to daddy. i think it's hilarious when you just say "hi" out of nowhere. especially when you're gorked out on pain medication. oh just now you looked at me and said "i sleepy" and i told you that you could go back to sleep so you nodded and shut your eyes. you really are a funny little bird. you're doing lots of cute things. i can't remember them all. i'll tell you later maybe.
i can't possibly begin to express my thankfulness to our friends and family who have checked on you. their prayers and encouraging words mean more to me than i could ever explain. they are our cheering section and so much more. i was hysterical with fear during surgery yesterday. i didn't want to even think about what was going on with you down there in that OR because it made me crazy but then i felt bad for not thinking about it and just wanting to be distracted. in the middle of all this madness going through my head i got a text from my sweet friend abby that said "keep picturing Jesus gowned up in that OR. guiding those surgeons. like...let's fix my girl again guys. on my knees, friend." and although this put me into another round of hysterics, it came at the perfect moment and gave me the peace i hadn't been able to find all day. and my sweet cousin melissa reminded me today "whenever you feel down, just remember you have so many people always praying for y'all and your miracle girl! you quite literally have your own prayer army ready to bombard heaven's gates on your behalf." thank you abby, and melissa, and everyone else who has prayed for catherine and encouraged us and stood behind and walked with us during this particular part of catherine's story. we have felt you and been strengthened by you. i am enormously thankful and wish i could hug every one of you and give you big kisses on the cheek. and then let catherine kiss you, because she gives the best kisses.
alright my angel. you can do this. i love you more than life and wish desperately i could be doing this instead of you.
bring on the gas.
ps. it has been predicted that sometime over the next couple of days i'll erase my letter from yesterday. that maybe i won't be happy with the way i was griping after i calm down a bit more. that might be right-i don't generally like to talk bad about people. it's virtuously impossible to do that and reflect Jesus at the same time. but then again i value authenticity over almost everything else, so i might just leave it there. and i am a flawed and imperfect daughter of the King walking around in a fallen world. so right now, my bet is that the previous letter will remain just as it is...but it's yet to be determined=)
Friday, December 17, 2010
Wednesday, December 15, 2010
here are some fun things we've been doing over the last few weeks.
i love this picture of you. you were so excited about our christmas tree and the ornaments. "oh-muh-nents." you would tell us that bob was your favorite (bob the tomato) and that the tiger was daddy's favorite. i asked which one was mommy's favorite and you pointed to one of our "baby's first christmas" ornaments. fair enough=)
christmas is absolutely magical with a sweet little girl in our home. i remember being little and feeling all "magical-y" on christmas eve because the whole world was anticipating together and watching the sky for santa claus to come...and what fun that was. and now it's magical all over again, but in a very different way. i like the kind of magical with you in the house the best=)
Tuesday, December 7, 2010
we're pretty excited about christmas at the davis house. we decorated before thanksgiving even got here and we listen to christmas music at home and in the car all day every day and we read christmas books every night before we go to bed. you now know that we celebrate christmas because Jesus was born on that day lots of years ago. you know that mary is His mommy and "jofef" is His daddy and there's an angel and a star involved...you also learned that Jesus made you better when you were a baby and so sick. you see pictures of yourself as a baby in the hospital and you say "baby cat-n sick"...and you not only tell me that Jesus made you better but that He also made mommy better. yes my sweet girl-He did indeed make mommy better. i think i froze and didn't say anything for a few seconds when i heard your sweet voice say that=) hands down one of my favorite things you've ever said. do you have any idea the depths of those words that came from your sweet little mouth? that Jesus really did, and nothing less than the greatest miracle in all history, make everyone all "better". purified and white as snow. that He died on a cross and forgave all of our sins and redeemed us from the pits. you kind of get it...one second i think that you're supernaturally understanding it all and then you say that, in addition to cat-n and mommy and daddy and gigi and jackson, He also made elmo and big bird better. so in your sweet 2-year-old mind, you get it=) i couldn't possibly be more proud. below this is a video of a few of our "Jesus was born and He made catherine better" lessons. enjoy=)
i love you sweet angel. you are our heart's delight and i'm so excited to celebrate Jesus' birthday with you and your sweet daddy.
Monday, December 6, 2010
a rare moment of bashful.
Monday, November 15, 2010
in other news, i thought i'd share what you thanked God for during your bedtime prayers tonight. in this order: "apples, bananas, water, ice, dora, boots, elmo, daddy". dora, elmo, and boots always make the cut...and usually gigi, grandaddy, grandypa, nikki, jackson, anna cate, and hazel are all in there too. but tonight you were particularly focused on God's provision of nourishment in your life=)
i love you sweet angel. i'm so lucky you are my girl.
Saturday, November 6, 2010
you are the cutest. that's nothing new, but it just surprises me every day i think. my sweet friend libby told me that the terrible two's is a crock. that her sweet boy isaiah gets cooler every day. so far, you are following in his footsteps. do you remember the germer's? libby and kevin and isaiah?? they are in virginia and we miss them so much.
so as for general updates, fall is here. it's getting cooler and we're liking that except that we're both a little sick. no big deal though. i think we're gonna make it. you're in your little pre-school 4 or 5 days a week now and doing MUCH better than before. i don't think i've told you this either, but we started you in one but switched after a month. i didn't know if i was being a crazy mama with unrealistic expectations, but we went on my instincts and changed schools, and they have proven me not crazy. at least, not crazy in this situation. mama's crazy is still up for debate. but you like this new school so much better. i'll leave it at that. but mama's heart is much happier now that yours is=) i've started my new job. i love it. it's a somewhat emotional thing for me to be working as a nurse practitioner-just because it reminds me of how God carried me through grad school in the midst of having a sweet precious girl that was so sick and in and out of the hospital for the first two years of her life. but enough of the dramatic and back to the updates...
~one of my favorite things you do lately is give us a run-down of each day. this is what you say, in this order: mommy work, daddy work, cat-n play friends (catherine plays with friends, at school), eat, take nap, mommy comes, go home." i think it's hilarious (and also brilliant) that you tell us in the correct order what happens every day.
~a few weeks ago you were playing in the tub with your letters that stick up on the wall. i was listening to you playing and you kept saying "LETTERS! YEAH COME ON! LETTERS! YEAH COME ON!" i don't know where that came from, but it was pretty funny=)
~remember how you got a skin infection around your g-tube this summer? well now you will randomly pull up your shirt and point to your tube and say "tube hurt......better". and then you got strep throat in august and you keep saying "sick.....better". like you want to remind us that you were sick but now you're better. we saw auntie robyn in target last month and that was the first thing you said to her. drama queen, maybe?
~you like to tell us who you think is cool. which is everyone. but if we let you go in order you usually say "cat-n cool! daddy cool! mommy cool! jackson cool! gigi cool! granddaddy cool! grandypa cool! nikki cool!" we also don't know where you learned what "cool" means...
~you have a book called "poodlena" about a pink sassy poodle. you call her "penny-woona" and we make you say it all day long.
~we had one of my favorite saturdays a few weeks ago. we sat on the couch snuggled under blankets together reading books and watching movies and eating pizza. i hope we have lots of those saturdays over the next 16 years=) they are my favorites.
ok. here are some pictures.
warner zagorski demasters is here!!! we were lucky enough to be in columbia for the day of his arrival!!! congratulations kristy and dave!! we'll never be able to thank you enough for letting us be a part of that special day!! i love you three so much=)
mommy and daddy went to my high school reunion a few weeks ago...these are some of my favorite friends from high school! back row: danielle longo makris, carly dwyer whatley, emilie ross smith, your mama, robyn rayside zercher, hannah phillips dichiara. front row: lauren turriglio, ashleigh wallace huggins. sweet girls!!! they have all been cheering you on since you were growing in my tummy!!!
Thursday, September 2, 2010
~when you see pictures of penguins, you say "pennies"
~you found our old baby einstein videos and you call them "baby fine-fine"
~we were looking at some pictures of our cousin's sweet new girlfriend...when we got to one looking at her from behind while she was looking out at the ocean (in a bathing suit) you said "HINEY!" and got really excited=)
~we finally gave in and bought you your own little potty. you sit on it and grunt and push and it's hilarious. you tee-tee in it once or twice a day and are very proud of yourself! we are proud of you too!
~pillow is "pedal" and yellow is "yadow"
~you know the game "pee-pie" kinda like peek-a-boo? when we play it and you say "POO-PIE!" ~you call diapers "boppers" and i can't get enough of it. you always tell me who's on your diaper-it used to be elmo and you got upset when we started buying mickey mouse diapers instead...but you're on board now and tell me "MEE-MOUSE!" when i tell you it's time to change your diaper=)
there's the update for now=) you were a sweet sweet girl at your party-my grandmother kept saying she didn't know another 2 year old who was so patient opening presents one by one and not playing with them until the end. i think she's biased, but i am too, so i'll take it=)
i love you my sweet 2 year old girl=) enjoy your pictures!