Yesterday afternoon I got a call from the U and one of Dr. Silver's team wants us to get a MRI now. Mikey is upset about this but I figure we're being treated by a team (technically) and things like this are bound to come up. There is a Dr. Byrne that is his partner and she's the one that requested this test. I figure they're also educators and if this helps them have a definitive outlook of Ireland's chest...well, I'm okay. It's not like it's going to cost us a gazillion and it was at least scheduled the same day as my next appt. in two weeks.
Well, Mikey has frozen me this morning. He is the thermostat nazi and must have took it upon himself to turn it off. It was 53 degrees on our thermostat this morning and I can tell you it was colder than that in the main rooms of our house...the news is giving us a high of 42 degrees right now!!! During the day, it's getting around mid 60s and feels good enough to turn off....the nights, another story!
Anywho, I was pretty productive yesterday....let's go for another day like that! Bathrooms could use scrubbing, sheets need washed and I should probably start focusing on something for mother's day.
Thursday, April 30, 2009
Wednesday, April 29, 2009
Blessed / details of the appt.
Between emails, facebook and this blog...I'm feeling really blessed. Thanks so much for everyone thinking of us. I know that we're always thinking of our friends and family but something like this happens and all of a sudden, everyone makes it known that you're thought of. It's so nice and means more than you can imagine. ...I think some of our family worries because we're out here in Utah alone. Trust me, we're not alone. We have very good friends that will step up the minute we ask and plenty more that are there without being asked. In this technological world, we are in touch with everyone and we have daily encouragement. I'm in touch with people that I hadn't known for years, and this blog brings new friends all the time. Even better, I'm in touch with people who are either going through this or have been here and know what we're dealing with. I'm just feeling thankful this morning and wanted to make sure everyone knew...you all know who you are and I thank you.
Well, yesterday's visit to the U went very well. Our genetic counseling appointment was fairly short. All of the results to amniocentesis came back normal. The counselor took a quick family history from us and let us know that he saw nothing that raised his eyebrows. He was very kind and just stated what we'd already learned...basically, that CDH does not have any definitive cause. It is simply something that happens and the genetic counseling world is working very hard to find out ways to better understand why this happens. Good luck to them. It is noble and I understand nothing of what they do and am just grateful they have ways to assure us further that we're dealing with an isolated problem. ....Once we were done with that appointment, we were whisked back to our waiting room to meet with Dr. Silver. I was weighed, very happy because I hadn't gained even a pound, which is fine because I'm now being seen every two weeks. I had a midwife check Ireland's heart beat and ask routine pregnancy questions of how I was feeling and did I have questions. I preferred to wait to ask Dr. Silver, but she was efficient and knowledgeable in her own right. I saw her as part of my appointment because all of my routine pregnancy appointments as well as any additional care are being dealt with at the U now. It's nice because I do not have to go between two different hospitals. ...Anyway, Dr Silver arrived on a white horse (yes, this man is my hero right now) and sat down to talk with us. I immediately started with my questions. 1. We will explore dates of when to be induced as we near the end of my pregnancy. He'd like me to carry Ireland as long as possible and apparently, I'll be seen two or three times a week towards the end. 2. I will not necessarily have a C-section. He actually prefers for me to have a vaginal birth because he said vaginal birthing actually facilitates her problems by squeezing fluid out of the lungs as she comes through the canal. 3. I can freely have an epidural and this will not harm Ireland further. For those that disagree, we are all entitled to our opinions. I consider any birth natural seeing how a baby is coming from the mother's womb. Period. I could care less if a child came from your tummy or your vagina,...whether you used drugs or not...it's all natural to me. 4. Tristan can come and see Ireland when she's born. Any other children are a no-no. I have decided that Tristan can be with me during labor but he'll have to wait until he has his own children for the grand moment. But as soon as she's born, I'd like him to be able to come in the room. Apparently, my birthing room will have a window to another room where all of Ireland's doctors will be. The minute she is born, Dr. Silver will hand her through the window where she'll immediately be incubated (still truly figuring out what this word means) and stabilized. From there, they'll wheel her by me so that I can see her and then they'll be off to the NICU (neonatal intensive care unit). Mikey and I have agreed that he'll give me a kiss and follow Ireland. Tristan can stay with me at this point. 5. I asked if my diet should be changed in any way and he said no. To continue a normal diet and that nothing I do will effect amniotic fluid levels or anything else really. 6. We asked about Ireland having an MRI. He said that we could if it made us feel better but currently, they are getting very good pictures from the ultrasound. I'll continue to get ultrasounds at least monthly and if more organs seem to be moving into the chest cavity, then he said we'd probably get a MRI at that point. (once Ireland is born, she'll most definitely get a MRI herself.) Currently he sees the stomach and some intestine in her chest cavity but nothing else at this point. He also said that the ultrasound was so well that he really felt that the heart was going to look good during our echo cardiogram. 7. I asked about holding Ireland and spending time with her in the NICU. He said that holding her may take time but that the view of the hospital is that touch is important in healing babies and that I can expect to be welcomed by staff to touch her and be by her as much as I want. He said that if I'm tired, that the NICU tends to take very good care of parents that want to be there and for me not to worry about places to stay. And Tristan will have restricted hours but can visit with either Mikey or myself...other children are off limits and visitors will also have restricted hours and may not necessarily enter Ireland's room. .....Well, once we monopolized his time, once again (even though he is kind and laughed when I told him that I wasn't comfortable calling to ask a simple question...he insists that he'd prefer me to call about anything rather than worry....see why I love this doctor)...anyway, once done, we were off to our echo cardiogram appointment. After a small series of hallways and elevators and hallways, we arrived at the pediatric cardiology department over at the Primary Children's hospital (conveniently next door rather than across town, nice, huh?). Well, Dr. Silver had already made us feel good about this hospital and the appointment. He said that bottom line, rather than having hospitals throughout the state that could care for CDH babies that it was decided to have all the experts at Primary Children's. This helps with insurance approving the care and it keeps the knowledge concentrated here at Primary. ...Okay, back on track with the echo cardiogram. This test is a detailed ultrasound directed at Ireland's heart. It took about half an hour to 45 minutes because Ireland was jumping around so much. The only discomfort was me laying on my back and not wanting to move because I knew that Ireland wasn't staying still and I didn't want to cause even more movement....well, the tech wasn't allowed to say anything to us and it had us somewhat worried because the test was taking so long. Once she was done and the doctor came in, he immediately said that he wanted to take a few more pictures. Two more minutes of worry. Well, once he began to speak, it was all good news. Ireland's heart is definitely moved towards the right side of her chest but all 4 ventricles appear to be working properly and all the attached veins and such are also appearing to work properly. This is one more hurdle that we sort of passed. We asked if her heart was crushing the right lung but the doctor said that this is highly unlikely. Her heart is towards the right but not at an angle completely over her lung and not even at an angle that would even compromise growth of the right lung. This was very good news because of course, her left lung is being crushed and her right lung is what she'll need to be strong at first. The doctor let us know that he'll most likely check Ireland after her birth but that it's good news if we do not meet again. We would only need to see him if she would have to go on the ECMO (big bad lung/heart bypass machine) which of course, we really don't want to go there.
Well, that was our day. It was about three hours for all of that. The efficiency at the U is pretty amazing. We truly expect to have a major wait at times because clearly they take their time to answer our questions and common sense says that they're also answering questions for their many other patients. Compared to our last appointment, there was hardly any other patients there this time. That must be good...less sick babies coming into the world maybe?
Anywho, next appointment will be in two weeks. It'll be an ultrasound, routine checks and question and answer time with our hero, Dr. Silver. He'll be beginning to coordinate meetings with those that we need to know at Primary Children's and here soon, we'll take a tour of the neonatal department. We're feeling so good right now. We're trying to keep our feet on the ground because we know that despite all good news, there is still a very serious and scary thing we're facing. It's hard to find that balance but we figure we might as well embrace all of the good news we get!!!
Well, yesterday's visit to the U went very well. Our genetic counseling appointment was fairly short. All of the results to amniocentesis came back normal. The counselor took a quick family history from us and let us know that he saw nothing that raised his eyebrows. He was very kind and just stated what we'd already learned...basically, that CDH does not have any definitive cause. It is simply something that happens and the genetic counseling world is working very hard to find out ways to better understand why this happens. Good luck to them. It is noble and I understand nothing of what they do and am just grateful they have ways to assure us further that we're dealing with an isolated problem. ....Once we were done with that appointment, we were whisked back to our waiting room to meet with Dr. Silver. I was weighed, very happy because I hadn't gained even a pound, which is fine because I'm now being seen every two weeks. I had a midwife check Ireland's heart beat and ask routine pregnancy questions of how I was feeling and did I have questions. I preferred to wait to ask Dr. Silver, but she was efficient and knowledgeable in her own right. I saw her as part of my appointment because all of my routine pregnancy appointments as well as any additional care are being dealt with at the U now. It's nice because I do not have to go between two different hospitals. ...Anyway, Dr Silver arrived on a white horse (yes, this man is my hero right now) and sat down to talk with us. I immediately started with my questions. 1. We will explore dates of when to be induced as we near the end of my pregnancy. He'd like me to carry Ireland as long as possible and apparently, I'll be seen two or three times a week towards the end. 2. I will not necessarily have a C-section. He actually prefers for me to have a vaginal birth because he said vaginal birthing actually facilitates her problems by squeezing fluid out of the lungs as she comes through the canal. 3. I can freely have an epidural and this will not harm Ireland further. For those that disagree, we are all entitled to our opinions. I consider any birth natural seeing how a baby is coming from the mother's womb. Period. I could care less if a child came from your tummy or your vagina,...whether you used drugs or not...it's all natural to me. 4. Tristan can come and see Ireland when she's born. Any other children are a no-no. I have decided that Tristan can be with me during labor but he'll have to wait until he has his own children for the grand moment. But as soon as she's born, I'd like him to be able to come in the room. Apparently, my birthing room will have a window to another room where all of Ireland's doctors will be. The minute she is born, Dr. Silver will hand her through the window where she'll immediately be incubated (still truly figuring out what this word means) and stabilized. From there, they'll wheel her by me so that I can see her and then they'll be off to the NICU (neonatal intensive care unit). Mikey and I have agreed that he'll give me a kiss and follow Ireland. Tristan can stay with me at this point. 5. I asked if my diet should be changed in any way and he said no. To continue a normal diet and that nothing I do will effect amniotic fluid levels or anything else really. 6. We asked about Ireland having an MRI. He said that we could if it made us feel better but currently, they are getting very good pictures from the ultrasound. I'll continue to get ultrasounds at least monthly and if more organs seem to be moving into the chest cavity, then he said we'd probably get a MRI at that point. (once Ireland is born, she'll most definitely get a MRI herself.) Currently he sees the stomach and some intestine in her chest cavity but nothing else at this point. He also said that the ultrasound was so well that he really felt that the heart was going to look good during our echo cardiogram. 7. I asked about holding Ireland and spending time with her in the NICU. He said that holding her may take time but that the view of the hospital is that touch is important in healing babies and that I can expect to be welcomed by staff to touch her and be by her as much as I want. He said that if I'm tired, that the NICU tends to take very good care of parents that want to be there and for me not to worry about places to stay. And Tristan will have restricted hours but can visit with either Mikey or myself...other children are off limits and visitors will also have restricted hours and may not necessarily enter Ireland's room. .....Well, once we monopolized his time, once again (even though he is kind and laughed when I told him that I wasn't comfortable calling to ask a simple question...he insists that he'd prefer me to call about anything rather than worry....see why I love this doctor)...anyway, once done, we were off to our echo cardiogram appointment. After a small series of hallways and elevators and hallways, we arrived at the pediatric cardiology department over at the Primary Children's hospital (conveniently next door rather than across town, nice, huh?). Well, Dr. Silver had already made us feel good about this hospital and the appointment. He said that bottom line, rather than having hospitals throughout the state that could care for CDH babies that it was decided to have all the experts at Primary Children's. This helps with insurance approving the care and it keeps the knowledge concentrated here at Primary. ...Okay, back on track with the echo cardiogram. This test is a detailed ultrasound directed at Ireland's heart. It took about half an hour to 45 minutes because Ireland was jumping around so much. The only discomfort was me laying on my back and not wanting to move because I knew that Ireland wasn't staying still and I didn't want to cause even more movement....well, the tech wasn't allowed to say anything to us and it had us somewhat worried because the test was taking so long. Once she was done and the doctor came in, he immediately said that he wanted to take a few more pictures. Two more minutes of worry. Well, once he began to speak, it was all good news. Ireland's heart is definitely moved towards the right side of her chest but all 4 ventricles appear to be working properly and all the attached veins and such are also appearing to work properly. This is one more hurdle that we sort of passed. We asked if her heart was crushing the right lung but the doctor said that this is highly unlikely. Her heart is towards the right but not at an angle completely over her lung and not even at an angle that would even compromise growth of the right lung. This was very good news because of course, her left lung is being crushed and her right lung is what she'll need to be strong at first. The doctor let us know that he'll most likely check Ireland after her birth but that it's good news if we do not meet again. We would only need to see him if she would have to go on the ECMO (big bad lung/heart bypass machine) which of course, we really don't want to go there.
Well, that was our day. It was about three hours for all of that. The efficiency at the U is pretty amazing. We truly expect to have a major wait at times because clearly they take their time to answer our questions and common sense says that they're also answering questions for their many other patients. Compared to our last appointment, there was hardly any other patients there this time. That must be good...less sick babies coming into the world maybe?
Anywho, next appointment will be in two weeks. It'll be an ultrasound, routine checks and question and answer time with our hero, Dr. Silver. He'll be beginning to coordinate meetings with those that we need to know at Primary Children's and here soon, we'll take a tour of the neonatal department. We're feeling so good right now. We're trying to keep our feet on the ground because we know that despite all good news, there is still a very serious and scary thing we're facing. It's hard to find that balance but we figure we might as well embrace all of the good news we get!!!
Tuesday, April 28, 2009
At the U of U
Today is our next appointment at the U. We've got a genetic counseling appointment...don't really know what that entails beyond the amniocentesis results and possibly medical history from Mikey and I....my history will be short due to adopted and have no history. This is the first time I've really wished I could have atleast some medical records of my birth parents. All I know is that my birth fater passed away not too many years ago and that my birth mother suffered from a mental illness. Not a lot. As for the amniocentesis results, I feel that this will be good news since the preliminary results came back all normal. After the genetic counseling, we visit with Dr. Silver. He is my primary physician now so I don't know if this'll be part examination / part consultation. I'll be sure to shave, just in case. ....I know that we have a list of questions this time around. A few I've got are: Will I be induced or have a c-section?, Should my diet change to help with amniotic fluid levels or to help Ireland in any way?, Is my cervix OK because I've stopped "relations" (trying not to put TMI) since I've been all out bleeding afterwards?, Will I meet with a social worker soon so that I can better know what to expect at Ireland's birth? Can Tristan at least see her?....a few more. He said to ask him anything so I'm taking full advantage. After this, we have an appointment for the echo cardiogram. I'm very nervous about this appointment. This will make sure that Ireland's heart is ticking along correctly and not too compromised since it has been moved over by her stomach. I've read that heart problems are fairly common in CDH babies and this will be such a relief if it means one less problem that she'll have to deal with. .....It's funny, sort of. I watch the ultrasound that is about 20 minutes, where they first discovered that she had CDH. I study it as if I know what to look for. For those that do not know, I do quite a bit of ultrasound myself, except on industrial materials. So for all of my experience, it is actually completely different...to the point that my screen is read in graph format, not an actual picture. But anyway, I understand fully the technology behind ultrasound and sit there acting like I know what I'm looking at. I don't really. There are dimensions that I get but I really know what I'm looking at simply because the lady that did the ultrasound told me what was what. I sit there looking at where her stomach is and where her heart is and swear that the heart is showing at least all 4 chambers and that it seems to be pumping at a good speed. I certainly hope that it is. I've prayed more than I can remember about this.
Anyway, we need good news. We have been doing quite well with coping (I think) and I don't want to go back to those first few dark days. We have a few friends that believe everything will get better and that's an awesome look but really, it's a fact at this point. She has a definite hole in the diaphragm. Her organs can definitely move up and down. Her stomach and most likely those organs connected are in her chest cavity already and it's doubtful they'll move as they're developing. Biggest thing at this point, we pray the liver stays put and does not move up. This will continue to be a good thing if her liver stays low. ....we have accepted the facts as we have them so far and continue to learn what we can expect.
Oh well, just asking for people's prayers today that things go well. This brings me alot of comfort. It's all we really have right now. ...also, I wanted to touch base that for now, I'm over being angry about all of this. None of us know the big picture here and I guess if it's not my baby, it would have to be someoneelses' and that doesn't seem right either. I guess we're dealing with this because Mikey and I are strong enough to handle this together. It sucks, it isn't an answer that I like, it's simply all I've got. Who can answer why someone deals with this pain and the young child down the street has a dumb moment and has a perfectly healthy baby? It's completely unfair to me but I at least learned a long time ago that life isn't always fair. I like to imagine that Ireland had to have me as her mother because I will fight for her, I won't wither and feel sorry for us forever, I'll accept her completely and somewhere out there is this plan that God had for us because he has some higher purpose that we just don't know about yet.
Anyway, I know that the grass isn't always greener on the other side. Everyone has problems and pain. I definitely got a wake-up call on that in the past few days. I'm just lucky enough that the people in my life that are dealing with their own troubles, deal with it in ways to be mirrored.
....okay, time to start this day. Good vibes to everyone. Prayers to my sis-in-law because she's having some big time tests going on today, too. Hopefully, they'll bring some answers so that she can hurry up and get better!!! And of course, Ireland is my beautiful girl! I'll be posting soon to let everyone know how these tests went today and maybe share some answers to my pressing questions.
Anyway, we need good news. We have been doing quite well with coping (I think) and I don't want to go back to those first few dark days. We have a few friends that believe everything will get better and that's an awesome look but really, it's a fact at this point. She has a definite hole in the diaphragm. Her organs can definitely move up and down. Her stomach and most likely those organs connected are in her chest cavity already and it's doubtful they'll move as they're developing. Biggest thing at this point, we pray the liver stays put and does not move up. This will continue to be a good thing if her liver stays low. ....we have accepted the facts as we have them so far and continue to learn what we can expect.
Oh well, just asking for people's prayers today that things go well. This brings me alot of comfort. It's all we really have right now. ...also, I wanted to touch base that for now, I'm over being angry about all of this. None of us know the big picture here and I guess if it's not my baby, it would have to be someoneelses' and that doesn't seem right either. I guess we're dealing with this because Mikey and I are strong enough to handle this together. It sucks, it isn't an answer that I like, it's simply all I've got. Who can answer why someone deals with this pain and the young child down the street has a dumb moment and has a perfectly healthy baby? It's completely unfair to me but I at least learned a long time ago that life isn't always fair. I like to imagine that Ireland had to have me as her mother because I will fight for her, I won't wither and feel sorry for us forever, I'll accept her completely and somewhere out there is this plan that God had for us because he has some higher purpose that we just don't know about yet.
Anyway, I know that the grass isn't always greener on the other side. Everyone has problems and pain. I definitely got a wake-up call on that in the past few days. I'm just lucky enough that the people in my life that are dealing with their own troubles, deal with it in ways to be mirrored.
....okay, time to start this day. Good vibes to everyone. Prayers to my sis-in-law because she's having some big time tests going on today, too. Hopefully, they'll bring some answers so that she can hurry up and get better!!! And of course, Ireland is my beautiful girl! I'll be posting soon to let everyone know how these tests went today and maybe share some answers to my pressing questions.
Saturday, April 25, 2009
Insurance and shower info
Yesterday, I was a bit lazy. Truth be known, I did run a few errands in the morning, got Ireland a few outfits and went through clothes that had been given to me and even hung those up....so not that lazy. If Monica or Darryl is reading this, thank you. It's amazing that you guys have truly given so much to this baby. She is to the point that we just need a crib and bedding for having our basic needs covered. Wow!, Thanks again...we really don't know how to repay you, your daughter, or granddaughter.
.....I wanted to have a thorough and honest post for anyone going through this CDH stuff. This is really why I created this blog...AND getting my personal junk out there. I called the insurance company this week to have our major dose of financial reality out in the open. My first call to customer service didn't go so well. I must of got a hold of the ditziest girl in the place...she actually giggled because she said it was funny that I needed to see if I was going to be broke. The only reason that I even said this was for the fact that there was dead silence on her end and for a minute there I wasn't sure if anyone was on the line. Finally, after explaining our situation as simply as I could, I said please let us know if we're going to be broke or not. She giggled. Said she knew that there would b e a $200.00 admittance fee once Ireland was born and gave me another number to call once she was born. I was in a decent enough mood to say that I knew she didn't think this situation was funny and that I must of come across wrong, she atleast apologized. Anywho, about 2 minutes after I hung up, I decided to call the other number she gave me...this was actually the preadmittance number on the back of our insurance card (which is blue cross blue shield federal). ...Well, this time I got ahold of a very nice lady. She expressed concern for our situation and let me know that the pregnancy should be completely covered..very good news that I'll explain later. She then let me know that Mikey and I did not have to worry about making any calls once Ireland was born, that the U and Primary Children's was very good about covering everything, since our care is from here on out pretty much coordinated among many. More good news because there will be enough to worry about without having to stop everything and get insurance approval. ...From there, she wanted to transfer me to someone that could give us more detailed information about what is covered after Ireland's birth. This took a minute because she had informed me that she'd explain our situation. Well, this guy got on there, very professional and kind, and began to explain our policy in a straightforward and detailed format. Basically, there is an admittance fee of $200, there is a surgery fee (I'm pretty sure this was what he said) of $300. Our policy covers 85% of most everything else for Ireland's care and we'll pay up to our "cap" of $5000 and insurance will take over the remaining payments for the year that may go over that amount. Wow, $5000. We atleast have a number now. We figure with the doctor having already let us know that her care will at "best case scenario" be 3 weeks....that we'll be paying our full cap. We also know that at Ireland's birth, there is usually a minimum of 10 doctors and nurses present...most of these will be sending a bill, I'm sure. I pray to God that she will continue her road of "best case scenario" because come January of next year, we will start a new cap. ...Anyway, that man was very kind. He actually said that he was sorry to give us such news but that in today's world, it was much better than having to pay for all of Ireland's care. ...This is something Mikey and I agree on already. I can't imagine those that are stuck with the bill. .....Early this week, we got our first "bill" (really what was billed to insurance) and it was $1881. This bill was simply for my initial tests and did not include the dr's billing. Thank God again for insurance, because we won't have to pay a dime of this and also, I have so many appointments (every two weeks, later it's weekly and near the due date, I hear it can be a few times a weeek), that there are bound to be plenty more of these "bills" coming our way. ....I know we live in a society that complains about insurance, us included. Mikey works hard all week and pays a pretty penny for the insurance that we do have. We have complained with the masses until this came about. That insurance man was right, this is alot of money for us and is not an easy thing to swallow, but in the bigger picture, this is something we can atleast wrap our head around. We will most likely borrow against retirement. I have called our tax guy to see if any of this can be written off but so far I haven't had a return call....I'll have to try again this coming week. If you know anything about tax rules on any of this, please email, call, or post so I can get a hold of you.
Anyway, this may all seem very depressing but if you knew how much we have wanted this little girl, it's bearable. We had actually considered in vitro fertilization at one point and that, from what I understand, would have been just as expensive, actually much more. We just really want her to heal and come home. Maybe she'll get all of this worry out of the way and become an angelic teen....:)we can hope.
Well, we have friends and family starting to ask what we need. We truly need your hope and prayers. I'm still sort of wishy-washy on the whole baby shower. One day, I really want it, the next day, I don't. My friend, Jeannie is having it for me and I've actually decided to wait until July. Probably early July because she has a ton of obligations in June and I'd rather wait until we have more information from the neonatal side of things and know our basic needs from what the social worker will suggest. In truth, we know we'll need some baby things but we'll also need food and maybe gas cards (?) for while Ireland is at the U. Give what you can or what you think is best. Remember, Ireland's due date is August 23rd. This is the day before Tristan starts school....maybe you can just call us and see if we'd like a basic meal or something...I know I've got friends that make some great breads and stuff that can last our little family a week...that would be awesome and one less thing to think about. Also, if you buy Ireland clothing, she'll most likely skip out on the entire newborn sizes. In the hospital, the babies mainly wear a diaper, graduate to socks and hats....and if we're truly lucky, she'll be able to wear a onesie depending on her care.
....well, this felt like a very technical post. It's okay. Like I said, want this to be informative and personal. I hope everyone had a good week.
.....I wanted to have a thorough and honest post for anyone going through this CDH stuff. This is really why I created this blog...AND getting my personal junk out there. I called the insurance company this week to have our major dose of financial reality out in the open. My first call to customer service didn't go so well. I must of got a hold of the ditziest girl in the place...she actually giggled because she said it was funny that I needed to see if I was going to be broke. The only reason that I even said this was for the fact that there was dead silence on her end and for a minute there I wasn't sure if anyone was on the line. Finally, after explaining our situation as simply as I could, I said please let us know if we're going to be broke or not. She giggled. Said she knew that there would b e a $200.00 admittance fee once Ireland was born and gave me another number to call once she was born. I was in a decent enough mood to say that I knew she didn't think this situation was funny and that I must of come across wrong, she atleast apologized. Anywho, about 2 minutes after I hung up, I decided to call the other number she gave me...this was actually the preadmittance number on the back of our insurance card (which is blue cross blue shield federal). ...Well, this time I got ahold of a very nice lady. She expressed concern for our situation and let me know that the pregnancy should be completely covered..very good news that I'll explain later. She then let me know that Mikey and I did not have to worry about making any calls once Ireland was born, that the U and Primary Children's was very good about covering everything, since our care is from here on out pretty much coordinated among many. More good news because there will be enough to worry about without having to stop everything and get insurance approval. ...From there, she wanted to transfer me to someone that could give us more detailed information about what is covered after Ireland's birth. This took a minute because she had informed me that she'd explain our situation. Well, this guy got on there, very professional and kind, and began to explain our policy in a straightforward and detailed format. Basically, there is an admittance fee of $200, there is a surgery fee (I'm pretty sure this was what he said) of $300. Our policy covers 85% of most everything else for Ireland's care and we'll pay up to our "cap" of $5000 and insurance will take over the remaining payments for the year that may go over that amount. Wow, $5000. We atleast have a number now. We figure with the doctor having already let us know that her care will at "best case scenario" be 3 weeks....that we'll be paying our full cap. We also know that at Ireland's birth, there is usually a minimum of 10 doctors and nurses present...most of these will be sending a bill, I'm sure. I pray to God that she will continue her road of "best case scenario" because come January of next year, we will start a new cap. ...Anyway, that man was very kind. He actually said that he was sorry to give us such news but that in today's world, it was much better than having to pay for all of Ireland's care. ...This is something Mikey and I agree on already. I can't imagine those that are stuck with the bill. .....Early this week, we got our first "bill" (really what was billed to insurance) and it was $1881. This bill was simply for my initial tests and did not include the dr's billing. Thank God again for insurance, because we won't have to pay a dime of this and also, I have so many appointments (every two weeks, later it's weekly and near the due date, I hear it can be a few times a weeek), that there are bound to be plenty more of these "bills" coming our way. ....I know we live in a society that complains about insurance, us included. Mikey works hard all week and pays a pretty penny for the insurance that we do have. We have complained with the masses until this came about. That insurance man was right, this is alot of money for us and is not an easy thing to swallow, but in the bigger picture, this is something we can atleast wrap our head around. We will most likely borrow against retirement. I have called our tax guy to see if any of this can be written off but so far I haven't had a return call....I'll have to try again this coming week. If you know anything about tax rules on any of this, please email, call, or post so I can get a hold of you.
Anyway, this may all seem very depressing but if you knew how much we have wanted this little girl, it's bearable. We had actually considered in vitro fertilization at one point and that, from what I understand, would have been just as expensive, actually much more. We just really want her to heal and come home. Maybe she'll get all of this worry out of the way and become an angelic teen....:)we can hope.
Well, we have friends and family starting to ask what we need. We truly need your hope and prayers. I'm still sort of wishy-washy on the whole baby shower. One day, I really want it, the next day, I don't. My friend, Jeannie is having it for me and I've actually decided to wait until July. Probably early July because she has a ton of obligations in June and I'd rather wait until we have more information from the neonatal side of things and know our basic needs from what the social worker will suggest. In truth, we know we'll need some baby things but we'll also need food and maybe gas cards (?) for while Ireland is at the U. Give what you can or what you think is best. Remember, Ireland's due date is August 23rd. This is the day before Tristan starts school....maybe you can just call us and see if we'd like a basic meal or something...I know I've got friends that make some great breads and stuff that can last our little family a week...that would be awesome and one less thing to think about. Also, if you buy Ireland clothing, she'll most likely skip out on the entire newborn sizes. In the hospital, the babies mainly wear a diaper, graduate to socks and hats....and if we're truly lucky, she'll be able to wear a onesie depending on her care.
....well, this felt like a very technical post. It's okay. Like I said, want this to be informative and personal. I hope everyone had a good week.
Thursday, April 23, 2009
Sad stuff...don't read unless prepared for sad story
I've been busy this week working with a particular company and don't have to go in until later today. Waking up a bit early, I decided to catch up on some of the babies I keep up with on their families' blogs. So far, I've been paying attention to Kaden, Ruby and recently, Gumdrop. Well, I started with little Gumdrop's blog. He's been in the hospital for over two months and is getting pretty strong ...well, out of nowhere, his mother has also been following Kaden's story and informed us all in the blog world that he had passed away on Monday. Crazy, totally started crying. I do not know these familes at all. I simply found them searching for a few stories of babies recently born with CDH. Kaden has only been in this world for a little less than 3 weeks. I found him about the same time I found out Ireland would be born with this condition. I feel so sad for this family and in a way, maybe selfishly, for myself. It's so good to hear people and there positive outlook on how medicine has advanced and for those that say all will be fine. ...reality is, this is a hell of a thing for a baby to be born with. Kaden had a very good prognosis during his mother's pregnancy and even in the beginning. I call these blogs I read, stories. Sadly, they are so real. A mother will be laying her baby to rest tomorrow and I just wonder how the hell she'll even get out of bed that day. She will, I'm sure and in time, she'll carry a beautiful memory of the 17 days that she knew her baby. Until that time, I'll carry a special place for her in my personal prayers because she, like me, was a little older and tried for a long time to even get pregnant. It all seems so unfair.
In truth, I have tried to avoid the sad stories because I don't want to go there. I want to see all the positive things that can come from this. I still have 16 1/2 weeks to go and I feel that since this is all out of my hands, that my only option is to pray and believe that little Ireland Rose will come out fighting. Today will be a bit tougher than it has been because I feel slapped in the face again with a reality that I don't want to see...a reality that could be us. God, please don't let this happen.
I'll be chipper again here soon but today, I feel that I invested just a little time and prayer for this little soul in California and that part of me just needs to mourn with his family and honor the battle that they fought. .....on the brighter side, little Gumdrop and Ruby (my other CDH baby blogs) are doing well. Ireland is also kicking and letting me know she's in there. If she kicks or drops any lower, I believe she'll start sneaking out to get a peek of the world....not yet, please.
In truth, I have tried to avoid the sad stories because I don't want to go there. I want to see all the positive things that can come from this. I still have 16 1/2 weeks to go and I feel that since this is all out of my hands, that my only option is to pray and believe that little Ireland Rose will come out fighting. Today will be a bit tougher than it has been because I feel slapped in the face again with a reality that I don't want to see...a reality that could be us. God, please don't let this happen.
I'll be chipper again here soon but today, I feel that I invested just a little time and prayer for this little soul in California and that part of me just needs to mourn with his family and honor the battle that they fought. .....on the brighter side, little Gumdrop and Ruby (my other CDH baby blogs) are doing well. Ireland is also kicking and letting me know she's in there. If she kicks or drops any lower, I believe she'll start sneaking out to get a peek of the world....not yet, please.
Wednesday, April 22, 2009
So busy
My sweet Ireland Rose is well and kicking. Her mother is simply tired. I've had a rough job to do these past few days and am too pooped to do much by the time I get home. I've (hopefully) got one more day to do this job which is entirely too taxing on anyone and then will be back to what was becoming a domestically sweet job...aka, home.
Just to update on Mikey's sis, Sarah, she's as well as can be. I have to talk to her before I post too much because that is totally up to her. I can say, send her your prayers and/or positive vibes. Do the same for us, please. Thinking of all my friends and family and how much they all mean so much to me in their own special ways....and yes, that last statement was quite 'hallmark' of me, but i meant it just the same.
Just to update on Mikey's sis, Sarah, she's as well as can be. I have to talk to her before I post too much because that is totally up to her. I can say, send her your prayers and/or positive vibes. Do the same for us, please. Thinking of all my friends and family and how much they all mean so much to me in their own special ways....and yes, that last statement was quite 'hallmark' of me, but i meant it just the same.
Monday, April 20, 2009
Mothers and Daughters / Random Thoughts
First off, Mikey's home, sore but safe. Tristan caught our little virus and his toilet and trash can became his personal enemy. Luckily, Tristan gets sick, yacks a bit and then lets us all know he is hungry. I made him simply have chicken noodle soup, in lieu of his buffet appetite and he's well this morning. Ireland melted her dad's heart by finally letting him know for sure that she was most definitely kicking his hand. Me, I'm okay. I woke up thinking of stuff that I decided to write about this morning.
.....Part of my excitement in having a girl was the fact that I have mommy issues. As most of my close friends know, I am adopted. That happened when I was nearly 7 but I have what's called a repressed memory and have few memories of times before that. All I can say with certainty about my birth mother is that when she visited me once a week when I was in the foster system, she gave me tootsie rolls. Through records and my parents recount, I also know that she didn't want to give me up but was too sick with a mental illness to take care for me properly and the state took me from her. As for my birth father, I simply have a brief social care report and know that my husband found him through a search and he passed away not too many years ago....he was in his early 50s. For those that wonder, part of me would love to meet my birth mother and part of me is scared to death. For all of my issues, I could never imagine calling her my mom....she doesn't know me, she did not raise me, and mother means alot more than you look like me, we share blood, and I gave birth to you. This is my opinion and we could argue all day about this. It would be nice to know many things about her and of course, I'd love for her to know I'm well, that I was raised well and that my life has been tough at times and perfectly beautiful at other times. I'd like to know her medical history a bit better, I'd like to know a few other things as well....part of me would love to have a relationship and part of me has seen one too many crazy talk shows.
Anywho, the dream I have for my daughter is that I always accept her as she is and do my best to keep my expectations totally realistic for who she is....for me to remember that she is not an extension of me but a perfectly unique individual that will develop her own hopes and dreams. I hope for her to be happy and to always know who she is and who truly loves her and will support her through her ups and downs. I hope she loves me as much as I already love her.
I've felt that in my life, I've actually been fortunate. I've learned alot, some easy, some not. For those that are close to me, I've had more than my fair share of upsets. I've also had more than my fair share of criticism. Through it all, I've made just a few discoveries...atleast these apply to me. First, others can have unrealistic expectations. I don't want to be this person, it causes alot of pain and unease of who you are. There is enough to deal with in this world without having self doubts and someone else's damn expectations of who they think you are or who they believe you should be. Second, support has more than one meaning. I've often just needed someone to say I'm here to listen when you need it and to give you a hug if that is what you need. I've occassionaly needed financial help...it would have been nice to hear this is a gift or pay me back when you can.....that's all. It's very hard to ask for help in any form, you sure don't need to feel guilty or wrong. Most of the time, if you're to the point you need help, you've already learned a lesson or two at this point. (then again, if you expect hand outs every single time you turn around, you need to learn a lesson the hard way...trust me, I've had this happen too. Not neccessarily at a time I agreed with but let's just say I value what I have.) Also, on this support note, I learned to make good money and now, I'm in a place where life throws you loop and you pray that finances do not become a issue again in your life. I've already been down that road and do not want to go back. We have saved, we feel we have an umbrella...and we also know that things may happen that we've never dreamed. Third, less can be more. This applies to damn near everything besides underwear coverage in pregnancy (I don't care how cute you think you are, your bum is not when you're preggo no matter how much your man may say it's cute). More than anything (for this particular blog) it applies to advice. Unless you've been there, you just don't know. If you empathize, wonderful....maybe saying I care and am here for you would be more than appropriate. If you truly have advice, think it through. Make sure you're not referencing someone that would be hurt by you using their name, better yet, don't use a name...and if you have truly rich advice, make sure that your point is truly understood and that you can back it up, if need be, with something that can make said advice valuable to the receiver(hope that came out right). Fourth, acceptance. This probably goes right on back to my first thing I've learned, expectations. Anyway, to accept someone doesn't mean that you have to like them, it just means you accept them for who they are. You haven't been in there shoes, you don't know them. ....I personally believe that if people truly understood acceptance that the world would be a better place.
Well, believe it or not my rambling has a point....though it may be perfectly scatter-brained...for one I'm trying to respect others while getting my point across (to you or me, I'm not really sure)....not an easy task. Bottom line, I'd like my daughter and I to be close. My son and I have always been close but we've also been through alot together...we've been poor as hell when he was young and had some good times when it was just us and then when I met Mikey, we were lucky and meshed together fairly quick and with a minimum of issues. ......With having a daughter, I am just acutely aware of my relationship with my mother and of a few more mother/daughter relationships that are not exactly easy or close although each of these relationships are filled with their own brand of love. .....I just really want my daughter to be able to talk to me about anything and everything. I hope she is comfortable in her own skin with me and that she feels love, support and acceptance from me always. Whether she comes out perfectly to the norm of society or perfectly to the norm of her own unique self, I just hope I am the mother that she needs and will also want.
.....Part of my excitement in having a girl was the fact that I have mommy issues. As most of my close friends know, I am adopted. That happened when I was nearly 7 but I have what's called a repressed memory and have few memories of times before that. All I can say with certainty about my birth mother is that when she visited me once a week when I was in the foster system, she gave me tootsie rolls. Through records and my parents recount, I also know that she didn't want to give me up but was too sick with a mental illness to take care for me properly and the state took me from her. As for my birth father, I simply have a brief social care report and know that my husband found him through a search and he passed away not too many years ago....he was in his early 50s. For those that wonder, part of me would love to meet my birth mother and part of me is scared to death. For all of my issues, I could never imagine calling her my mom....she doesn't know me, she did not raise me, and mother means alot more than you look like me, we share blood, and I gave birth to you. This is my opinion and we could argue all day about this. It would be nice to know many things about her and of course, I'd love for her to know I'm well, that I was raised well and that my life has been tough at times and perfectly beautiful at other times. I'd like to know her medical history a bit better, I'd like to know a few other things as well....part of me would love to have a relationship and part of me has seen one too many crazy talk shows.
Anywho, the dream I have for my daughter is that I always accept her as she is and do my best to keep my expectations totally realistic for who she is....for me to remember that she is not an extension of me but a perfectly unique individual that will develop her own hopes and dreams. I hope for her to be happy and to always know who she is and who truly loves her and will support her through her ups and downs. I hope she loves me as much as I already love her.
I've felt that in my life, I've actually been fortunate. I've learned alot, some easy, some not. For those that are close to me, I've had more than my fair share of upsets. I've also had more than my fair share of criticism. Through it all, I've made just a few discoveries...atleast these apply to me. First, others can have unrealistic expectations. I don't want to be this person, it causes alot of pain and unease of who you are. There is enough to deal with in this world without having self doubts and someone else's damn expectations of who they think you are or who they believe you should be. Second, support has more than one meaning. I've often just needed someone to say I'm here to listen when you need it and to give you a hug if that is what you need. I've occassionaly needed financial help...it would have been nice to hear this is a gift or pay me back when you can.....that's all. It's very hard to ask for help in any form, you sure don't need to feel guilty or wrong. Most of the time, if you're to the point you need help, you've already learned a lesson or two at this point. (then again, if you expect hand outs every single time you turn around, you need to learn a lesson the hard way...trust me, I've had this happen too. Not neccessarily at a time I agreed with but let's just say I value what I have.) Also, on this support note, I learned to make good money and now, I'm in a place where life throws you loop and you pray that finances do not become a issue again in your life. I've already been down that road and do not want to go back. We have saved, we feel we have an umbrella...and we also know that things may happen that we've never dreamed. Third, less can be more. This applies to damn near everything besides underwear coverage in pregnancy (I don't care how cute you think you are, your bum is not when you're preggo no matter how much your man may say it's cute). More than anything (for this particular blog) it applies to advice. Unless you've been there, you just don't know. If you empathize, wonderful....maybe saying I care and am here for you would be more than appropriate. If you truly have advice, think it through. Make sure you're not referencing someone that would be hurt by you using their name, better yet, don't use a name...and if you have truly rich advice, make sure that your point is truly understood and that you can back it up, if need be, with something that can make said advice valuable to the receiver(hope that came out right). Fourth, acceptance. This probably goes right on back to my first thing I've learned, expectations. Anyway, to accept someone doesn't mean that you have to like them, it just means you accept them for who they are. You haven't been in there shoes, you don't know them. ....I personally believe that if people truly understood acceptance that the world would be a better place.
Well, believe it or not my rambling has a point....though it may be perfectly scatter-brained...for one I'm trying to respect others while getting my point across (to you or me, I'm not really sure)....not an easy task. Bottom line, I'd like my daughter and I to be close. My son and I have always been close but we've also been through alot together...we've been poor as hell when he was young and had some good times when it was just us and then when I met Mikey, we were lucky and meshed together fairly quick and with a minimum of issues. ......With having a daughter, I am just acutely aware of my relationship with my mother and of a few more mother/daughter relationships that are not exactly easy or close although each of these relationships are filled with their own brand of love. .....I just really want my daughter to be able to talk to me about anything and everything. I hope she is comfortable in her own skin with me and that she feels love, support and acceptance from me always. Whether she comes out perfectly to the norm of society or perfectly to the norm of her own unique self, I just hope I am the mother that she needs and will also want.
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