9:30 EST
i promised i would update.
Chrissy is scheduled for surgery tomorrow (tuesday june 5) at 9:30 am.
the whole thing should take about 3 1/2 hours, with about 7-10 days of hospital recovery after that. our surgeon is the chief of cardio-thorasic surgery here at CHOP so, i feel pretty good about that.
in the end, our hope and trust is rooted in God, not the doctors-but i am REALLY grateful for good doctors.
thanks for the prayers you've been praying for us. please keep them coming.
Monday, June 4, 2012
Wednesday, May 30, 2012
less than a week
really?
less than a week until surgery. i hope so.
for those who may not know (which is probably most of you since i've been non-blogging for the past few months) Chrissy started out her life as a rock star. those are the words of her cardiologist, and i was oh so happy to repeat them any chance i got. she was gaining weight and being a pretty healthy baby, right up until she got a little cold- which turned into a nasty cold- which then turned into a couple nights in the hospital. before you start thinking anything too dramatic, they didn't really DO anything to her in the hospital. no medicine, no treatment (ok they did suction her nose out a total of 3 times but that's it), no supplemental oxygen, nothing. her stay pretty much consisted of them monitoring her breathing and letting all the nurses talk about how cute she is. the down side of having a nasty cold when it's already hard for you to breathe is that you really don't want to eat. doctors don't like it when babies don't eat, so we almost got to go hang out at the hospital again. but they gave us some medicine and said i could keep her at home as long as she didn't loose weight. (ever try to force feed an infant?? )
after seeing what one stupid little virus can do , and realizing how hard it is for "cardiac babies" to fight them off...well we've basically been under house arrest for the past month. we go to the store (where i look like a freakish germ-a-phobe wiping down the cart even though my kid is in a car seat) , we go to the zoo, and we go on lots of walks. what we CAN'T do is go anywhere that lots of kids or people in general would hang out- ie no bouncing bears, no library, and worst of all no church. (i don't care how clean you think the church nursery is, on some level it's still going to be a petri dish of slobber germs that gideon will bring home and give to the rest of the family)
that brings us to today's appointment, which was supposed to be the final call as to whether or not we get to have surgery next week (there was lots of talk about putting it off because of Chrissy's infection)
we went, she's gained a little weight (12 lbs 5 oz now!!) and her color looked better. which is great but doesn't count as much as what her lungs sound like. basically, our cardiologist gave us the go ahead, but made it very clear that the anesthesiologist will probably freak out when they hear her lungs and there's a slight chance her surgery could still be called off. that would be BAD. for multiple reasons.
which is basically why i'm finally sitting down and blogging again. i need my peeps to be praying this weekend. i'll be asking you to pray for her surgery when we get there, but for now i'm asking you to pray that we can just GET THERE.
pray that chrissy's lungs will clear. (it makes the surgeons happy, and makes recovery much easier)
pray that she eats a lot this weekend, so we can pack on even more weight before the operation.
i know God has His own timeline, and that He is in control. but.... (there's always a but) in my little human mind i just see this as the best time to get the surgery done. (garret's schedule, chrissy's overall health, availability of help, my sanity...lots of factors)
pray my people- PRAY.
i'll update monday when we get the final decision. (if not here then on facebook)
less than a week until surgery. i hope so.
for those who may not know (which is probably most of you since i've been non-blogging for the past few months) Chrissy started out her life as a rock star. those are the words of her cardiologist, and i was oh so happy to repeat them any chance i got. she was gaining weight and being a pretty healthy baby, right up until she got a little cold- which turned into a nasty cold- which then turned into a couple nights in the hospital. before you start thinking anything too dramatic, they didn't really DO anything to her in the hospital. no medicine, no treatment (ok they did suction her nose out a total of 3 times but that's it), no supplemental oxygen, nothing. her stay pretty much consisted of them monitoring her breathing and letting all the nurses talk about how cute she is. the down side of having a nasty cold when it's already hard for you to breathe is that you really don't want to eat. doctors don't like it when babies don't eat, so we almost got to go hang out at the hospital again. but they gave us some medicine and said i could keep her at home as long as she didn't loose weight. (ever try to force feed an infant?? )
after seeing what one stupid little virus can do , and realizing how hard it is for "cardiac babies" to fight them off...well we've basically been under house arrest for the past month. we go to the store (where i look like a freakish germ-a-phobe wiping down the cart even though my kid is in a car seat) , we go to the zoo, and we go on lots of walks. what we CAN'T do is go anywhere that lots of kids or people in general would hang out- ie no bouncing bears, no library, and worst of all no church. (i don't care how clean you think the church nursery is, on some level it's still going to be a petri dish of slobber germs that gideon will bring home and give to the rest of the family)
that brings us to today's appointment, which was supposed to be the final call as to whether or not we get to have surgery next week (there was lots of talk about putting it off because of Chrissy's infection)
we went, she's gained a little weight (12 lbs 5 oz now!!) and her color looked better. which is great but doesn't count as much as what her lungs sound like. basically, our cardiologist gave us the go ahead, but made it very clear that the anesthesiologist will probably freak out when they hear her lungs and there's a slight chance her surgery could still be called off. that would be BAD. for multiple reasons.
which is basically why i'm finally sitting down and blogging again. i need my peeps to be praying this weekend. i'll be asking you to pray for her surgery when we get there, but for now i'm asking you to pray that we can just GET THERE.
pray that chrissy's lungs will clear. (it makes the surgeons happy, and makes recovery much easier)
pray that she eats a lot this weekend, so we can pack on even more weight before the operation.
i know God has His own timeline, and that He is in control. but.... (there's always a but) in my little human mind i just see this as the best time to get the surgery done. (garret's schedule, chrissy's overall health, availability of help, my sanity...lots of factors)
pray my people- PRAY.
i'll update monday when we get the final decision. (if not here then on facebook)
this is Dr Rogers, our awesome cardiologist. we love her. lily thinks she's a mermaid.
Saturday, February 4, 2012
God is so good
well it's been awhile, but i'm pretty sure that i finally have a good excuse for not being up to date. i am now a mother of 3 kids under the age of 3. that's not to say that life is absolutely crazy, but it is a bit harder to find time to sit and blog. first things first- for those of you who don't live on facebook- Christina Rochelle Slaugenhoup was born friday january 13th at 6:21 pm. here's the best part- she was born loud, pink, and did AWESOME! she stayed in the cardiac intensive care unit for 5 days, but she was never on any medication or supplemental oxygen. basically our little girl has defied her diagnosis, and has made all the doctors and nurses smile. (the smile of "wow, we really saw this going down a little differently, but we're happy it's working out")
2 things strike me as funny right now. i'll try and get my point across, but i may ramble a bit. what can i say..i'm out of practice when it comes to getting my thoughts down in a concise manner.
1) i really can't tell you how many times we had to have "the talk" with different doctors, nurses, social workers, or random strangers. the talk i'm referring to it the "yes. we understand the gravity of the situation. we're not in denial, but we also refuse to freak out and be stressed for our entire pregnancy." it's almost like they expected us to come in to every visit with blood shot eyes and break out in hysterical sobs whenever they talked to us. look i'm not saying we weren't a little concerned about what was going to happen, but we decided early on that God was in control and there was pretty much nothing we could do- so why stress about it. that sort of confused some of the medical professionals. especially the ones that don't know why we were able to have that assurance or peace. (i feel like i'm babbling here, so i'm going to hope that i made my point and you get what i'm trying to say) anyways, the thing that makes me laugh is this- prior to delivery, when we had no idea what the outcome might be, the doctors sort of viewed us and our attitude with concern and scepticism. after delivery, when our rock star daughter was busy being a champ at breathing and basically just being a great baby, they viewed our attitude as ok. like now that things were stable it was acceptable for us to have faith that things would turn out ok. the thing is, we had no way of knowing how Chrissy would do, and our faith that God is sovereign and good REGARDLESS OF THE OUTCOME is what helped us be calm and rational. (babbling again, sorry) bottom line- it's nice to have the docs on our side now, and not looking at us like we're crazy uninformed, ignorant schmucks. now they smile and they LIKE that we aren't hysterical.
2) now that Chrissy is here and doing awesome. it has caused me moments of "did we over react? did we make a mistake? did we get people worked up and worried over nothing?" the answer of course is NO! we had no way of knowing that she would do as well as she has, and her little heart is still messed up and in need of multiple surgeries to repair it. we just lucked out that she didn't need those operations right at birth. this way she gets time to get bigger and stronger, and her heart will be bigger when the doctors go in to work on it. bigger is easier to work with in this case. so why does all that make me laugh. the fact that we pray to God asking and expecting him to answer us, and when he does we act so surprised. i truly believe that we did not over react. Chrissy could have had major complications at birth, but i believe with all my heart that the reason she didn't is because God answered our prayers and the prayers of our friends and family. any one who would dare to say we over reacted or accuse of of being drama queens looking for attention - well i can show those folks her echos or her chart notes. (not that i think anyone would say that) i'm just trying to get the point across that while God might not have healed our baby in utero, he is carrying her in his hand everyday. HE not our doctors (all of which are great by the way) is why my daughter is sitting beside me sleeping and swinging, waiting for her next opportunity to eat, and doing it all without trouble breathing or with any tubes hooked up to her.
ok, this might have been a weird "first blog since the baby" but that's the stuff that's been rolling around in my head. rest assured- life is great. life with 3 kids is...well...busy. BUT it's great and i wouldn't change it for the world.
i feel like i should put a picture in here, but i'm on garret's laptop and he doesn't have many pictures. so that will be my goal for next time, or you can just check out our FB page.
real quick details just so folks have the info if they want it :
surgery is put off for a few months, unless chrissy's oxygen levels start dropping. she's currently holding strong in the high 80's so we're good for now.
we have weekly weight and oxygen level checks, and bi-weekly visits to the cardiologist for EKG's and all that stuff.
keep on praying for us.
2 things strike me as funny right now. i'll try and get my point across, but i may ramble a bit. what can i say..i'm out of practice when it comes to getting my thoughts down in a concise manner.
1) i really can't tell you how many times we had to have "the talk" with different doctors, nurses, social workers, or random strangers. the talk i'm referring to it the "yes. we understand the gravity of the situation. we're not in denial, but we also refuse to freak out and be stressed for our entire pregnancy." it's almost like they expected us to come in to every visit with blood shot eyes and break out in hysterical sobs whenever they talked to us. look i'm not saying we weren't a little concerned about what was going to happen, but we decided early on that God was in control and there was pretty much nothing we could do- so why stress about it. that sort of confused some of the medical professionals. especially the ones that don't know why we were able to have that assurance or peace. (i feel like i'm babbling here, so i'm going to hope that i made my point and you get what i'm trying to say) anyways, the thing that makes me laugh is this- prior to delivery, when we had no idea what the outcome might be, the doctors sort of viewed us and our attitude with concern and scepticism. after delivery, when our rock star daughter was busy being a champ at breathing and basically just being a great baby, they viewed our attitude as ok. like now that things were stable it was acceptable for us to have faith that things would turn out ok. the thing is, we had no way of knowing how Chrissy would do, and our faith that God is sovereign and good REGARDLESS OF THE OUTCOME is what helped us be calm and rational. (babbling again, sorry) bottom line- it's nice to have the docs on our side now, and not looking at us like we're crazy uninformed, ignorant schmucks. now they smile and they LIKE that we aren't hysterical.
2) now that Chrissy is here and doing awesome. it has caused me moments of "did we over react? did we make a mistake? did we get people worked up and worried over nothing?" the answer of course is NO! we had no way of knowing that she would do as well as she has, and her little heart is still messed up and in need of multiple surgeries to repair it. we just lucked out that she didn't need those operations right at birth. this way she gets time to get bigger and stronger, and her heart will be bigger when the doctors go in to work on it. bigger is easier to work with in this case. so why does all that make me laugh. the fact that we pray to God asking and expecting him to answer us, and when he does we act so surprised. i truly believe that we did not over react. Chrissy could have had major complications at birth, but i believe with all my heart that the reason she didn't is because God answered our prayers and the prayers of our friends and family. any one who would dare to say we over reacted or accuse of of being drama queens looking for attention - well i can show those folks her echos or her chart notes. (not that i think anyone would say that) i'm just trying to get the point across that while God might not have healed our baby in utero, he is carrying her in his hand everyday. HE not our doctors (all of which are great by the way) is why my daughter is sitting beside me sleeping and swinging, waiting for her next opportunity to eat, and doing it all without trouble breathing or with any tubes hooked up to her.
ok, this might have been a weird "first blog since the baby" but that's the stuff that's been rolling around in my head. rest assured- life is great. life with 3 kids is...well...busy. BUT it's great and i wouldn't change it for the world.
i feel like i should put a picture in here, but i'm on garret's laptop and he doesn't have many pictures. so that will be my goal for next time, or you can just check out our FB page.
real quick details just so folks have the info if they want it :
surgery is put off for a few months, unless chrissy's oxygen levels start dropping. she's currently holding strong in the high 80's so we're good for now.
we have weekly weight and oxygen level checks, and bi-weekly visits to the cardiologist for EKG's and all that stuff.
keep on praying for us.
Saturday, January 7, 2012
another update
well there's sort of some stuff to update. not much, but enough that i am sitting here typing. so i guess that's something.
as for baby girl- SHE HAS A NAME!!! Christina Rochelle. (Chrissy for a while because that's a big name for a little girl) for those of you who are curious where the name came from, it's the girl version of my two brother's names (Christopher and Richard). it's subject to change until it's actually on a birth certificate, but we're pretty sure we're sticking with it.
we've met with the doctors a few times. nothing really different to report there. her heart has not fixed itself, but it hasn't gotten worse either. we're still just waiting to see how her airway looks at delivery, and from there we will be able to figure out what kind of shape she's in and how we progress.
as for progress...we're making some. without going into too much detail (because it's weird to talk about my cervix in a blog) things are starting to happen, and we should have a baby within a week or so. that's a little early but everyone is ok with it. especially me. the funny thing is Gideon's birthday is Jan 18th so, if Chrissy is born before that, we'll have had 2 babies in one year. silly. crazy. whatever adjective you want to insert there.
we did receive some good news this week. a couple weeks ago they thought they might maybe have seen something abnormal in one of her ultrasounds, so we ended up getting an amnio test just to see if there was anything else going on that we should be aware of. (there are some specific chromosomal / medical things that often accompany heart defects and some of those have medical components that the doctors would need to know about if Chrissy got rushed to surgery right after delivery) we just got those results back and they are all normal. huge praise for us! we know that if the test had come back differently we'd deal with it, and that God would still be there to help and give us the grace and strength we need to tackle that. but we're thankful that everything looks good in that area.
so that's where we're at as a family. just sitting around waiting for Chrissy to show up. Garret's bosses are awesome and sent him home early, just in case things start moving quickly. i've never met them but i love his bosses. they have been AMAZING throughout this whole thing.
this entry seems disjointed and random, and i really don't have a good closing thought. sorry about that.
i'm blaming it on end stage pregnancy brain.
and.....done.
as for baby girl- SHE HAS A NAME!!! Christina Rochelle. (Chrissy for a while because that's a big name for a little girl) for those of you who are curious where the name came from, it's the girl version of my two brother's names (Christopher and Richard). it's subject to change until it's actually on a birth certificate, but we're pretty sure we're sticking with it.
we've met with the doctors a few times. nothing really different to report there. her heart has not fixed itself, but it hasn't gotten worse either. we're still just waiting to see how her airway looks at delivery, and from there we will be able to figure out what kind of shape she's in and how we progress.
as for progress...we're making some. without going into too much detail (because it's weird to talk about my cervix in a blog) things are starting to happen, and we should have a baby within a week or so. that's a little early but everyone is ok with it. especially me. the funny thing is Gideon's birthday is Jan 18th so, if Chrissy is born before that, we'll have had 2 babies in one year. silly. crazy. whatever adjective you want to insert there.
we did receive some good news this week. a couple weeks ago they thought they might maybe have seen something abnormal in one of her ultrasounds, so we ended up getting an amnio test just to see if there was anything else going on that we should be aware of. (there are some specific chromosomal / medical things that often accompany heart defects and some of those have medical components that the doctors would need to know about if Chrissy got rushed to surgery right after delivery) we just got those results back and they are all normal. huge praise for us! we know that if the test had come back differently we'd deal with it, and that God would still be there to help and give us the grace and strength we need to tackle that. but we're thankful that everything looks good in that area.
so that's where we're at as a family. just sitting around waiting for Chrissy to show up. Garret's bosses are awesome and sent him home early, just in case things start moving quickly. i've never met them but i love his bosses. they have been AMAZING throughout this whole thing.
this entry seems disjointed and random, and i really don't have a good closing thought. sorry about that.
i'm blaming it on end stage pregnancy brain.
and.....done.
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