I started my blog for many reasons. I have had a blog since the day that Tyler was born. I updated it regulary. It was something that was easy to have and easy to keep updated. It has seen been closed but I have saved the updates and can go back to almost any given day and read what happened that day while in the NICU.
After a bit I changed to a wordpress blog and documented for a long time before coming over here. Blogging is therapeutic for me. It also allows others ( like my mom) and our family from far away to keep track of us. It was also a way for me to put our story out there. To met and find other moms in the same boat and to have questions answered.
As time went on that is how I have kept it. As a way to share, information, allow my mom ( and Nicky) to stalk me and yet still have the therapeutic part of blogging out there. Having a blog also opens you up to criticism. I don't mind criticism and a nice discussion of opinions.
That said (please be kind) a few of my preemie groups are up in arms about funds and donations given to certain people. While I don't have a problem with people donating. ( it is their money after all) I do have a problem when I feel like some information never gets out to the people who are donating.
So, I wanted to tell a little story about our Financial difficulties then and now with having a child born as a micro-preemie and now having a child with special needs.
We found out we were pregnant around May. I had insurance and was covered 100 percent. I was double covered. There were no out of pocket expenses. Then we had a "life change" and suddenly we found ourselves in a position where Dallas was not employed and I was losing my insurance. No insurance company that we could buy would cover me because I was all ready pregnant. Dallas got a job. I applied for medicaid. We were denied over about 50 bucks a month. So we just went with what we could. I was a student and so I bought the health insurance plan offered to students. It would cover a pregnancy with pretty minimal cost.
We were poor, struggling, students/newlyweds. We were not expecting what we got. Dallas had a good job and I was able to get a job at the same place. I went into work one day and was told that our department was downsizing. I was the last one hired. I was layed off. I was ok, because Dallas still had his job and I was in school so we still had my insurance and his insurance. A week later he was layed off. This was the first part of September 2005. The company we were working with kindly said they would allow us to keep our insurance till October 1st and then we were on our own or paying cobra. We still felt we were fine because I was only 21 weeks pregnant and covered under the insurance at school. Things were fine.. Things were fine.
Fast forward to the last weeks of September. September 19th, I woke up that night not feeling well. Sept 20th my doc said take it easy, it was nothing. Sept. 21st at 1:24am it was something. A 1 lb 11 oz 13 inch long little boy. No bigger than a ruler and skinnier than a pencil. And we owed 20 percent.
Ty was lifeflighted to LDS hospital, stablizied and this is where we started our medical journey. Once we were dropped from the insurance from Dallas job we were kinda in a panic. But something that doesn't come out often in reading about micro preemies is that babies born under a certain weight automatically qualify for social security. Social security guarantees these babies medicaid. Fact if the matter is.. these people will get their money. There is no way anyone can pay 20 percent of what it costs to keep a 25 weeker alive. There is no way.
This was written October 2. 2005:
Today we got the first "bill" for any of Tyler's hospital fees. This bill was for his Life Flight from Alta View Hospital (Sandy, Utah) to LDS Hospital (Downtown SLC). The bill is for: $9,009.14!!!!! Now this statement says "do not pay this amount" so I am assuming this is the statement before they bill the insurance company. So I don't think we will be asked to pay this amount, but we will see...
This was not for any real service JUST getting him to the other hospital safely.
While at the hospital for Tyler we received level 4 NICU care. The list, not including procedures like PIC lines and transfusions because there were to many to count in those first few days. But major procedures.
After Insurance was over in October we had nothing. Hence when the medicaid kicked in we were ecstatic. We knew that Ty would be taken care of. We still had multiple visits from the business managers there and billing people but there was nothing we could do. Those bills would reach over a million dollars.
Our cost and medical drowning came from me. I was not covered by medicaid. I was not covered by anything but cobra and my meager health insurance plan by the U. They don't cover some of the things that I had to do. We were able to pay for cobra but again you have a portion of that that you have to pay along with the premiums.
For me alone we owe ( and still do owe) somewhere around the 50-70 k mark. I still get bills that the U insurance didn't cover that we didn't know about. I had to have plastic surgery to close my c section, I had a wound vacuum keeping it closed. I had to have nursing care. I had to have a breast pump for Tyler. We weren't made of that kind of money.
What we have found though was that we could let the medical bill eat us. We needed to live. Our day to day living expenses are what caused our financial woes. Dallas was not working. He had been laid off. We were living off what credit cards we had and what we could bring in. Until I had my C section fixed I couldn't work. But I got a job right before Tyler came home to help us make ends meet. Dallas was doing contract work after contract work and we were staying afloat but barely. We would pay off part of our credit card and have to use it again just to put food on our table. We were paying for Gas to get to the hospital 2 or three times a day. That is where we saw our expenses coming from.
As time went on and we had Tyler home we had other expenses. Because he got medicaid for the first year do to the above mentioned social security our formula was covered by WIC. Dallas got a new job and we had great insurance where we paid 20 percent. BUT when medicaid ended for Tyler so did the "free" health care for him. The stuff we paid or have been billed for included shunt placement, shunt revision and 2 skull reconstructions. The last reconstruction alone was 90 k. 20% percent of that is a lot. That is just the surgeons portion. We owe for scans taken after his reconstruction because Dallas had a new job in Arizona so we were no longer covered.
Before moving to Arizona we put together our debt. It was large. It had ruined our ability to purchase anything on credit. This is including a house or a car. We have had me work to pay off some of the debt but we are no where near being out of medical debt. We will have it forever. BUT the day to day living is not like it was then. We don't' worry about that medical debt. We don't worry about that doctor who is still pursuing us after 4 years. Why? Because we can't. There is no way to pay it off.
Moving to Arizona was a hard move for me. Our medical insurance here is SOOO much better than Dallas and I could ever ask for. His work insurance, though an HMO, has been great. As long as I make all the necessary calls and make sure all the needed paperwork is done ahead of time we are fine. We pay extra to have the upgraded insurance instead of getting it in the check each paycheck. It has helped us a lot to have it covered. We have yet to have to pay more than our co pays.
For Tyler, because of his diagnosis of Cerebral Palsy and his vision we are able to get DDD insurance here. Which is basically medicaid. So Tyler is double covered. Why? Well at some point without medicaid children will cap out. He will cap out. He will have a max payout at some point. Brain surgery gets expensive. We may go YEARS without one and then do 2 in a year, like this year. It helps him get services like therapy that usually gets denied in an HMO.
HMO's don't think that water therapy or PT in general is beneficial to a child with cerebral palsy because it is a life long condition. But with his DDD services we do get them and we get what we need. Along with his DDD services we get respite care and other care for him.
So why the long post?
While people do need help in their day to day living with children with special needs, what you read on the Internet is not always what it is made out to be. Yes, financially it has ruined many people. Us included. But we made the sacrifice and moved to a state that allowed us to have better insurance and better state insurance.
We save babies at what cost? It doesn't stop when they walk out of the NICU. It doesn't stop when they are suppose to have caught up by age 2. 9 specialist for one small little boy doesn't stop if we didn't have insurance. I would be homeless to give him that care. There has to be something that works in this country.
Those living in socialistic health care countries don't have worse care. Is it the best for us? People say that they have to wait hours and hours for care in these countries, We waited for 9 hours for something that could have potentially been life threatening. Is it really "better" care because we are here.
I think it is great that people are able to get donations and feel the need to ask for them. I don't feel the need to. If someone like The Doctors want to give me 40 k I would gladly accept it and pay off what is left of our debt so we can keep moving forward. But I feel that Ty's story and his struggles and most importantly his triumphs are ours to share without reward.
Someone once made the comment ( who has a 24 weeker) that everyone should have a Tyler. And that is how I feel. I want to share him with the world. I want to be a advocate for children like him. I want to be a support system for the mother and those going through the NICU. Not asking and begging for help.
We love our son and we are and would go through financial "ruin" if you will to have him hear with us. We would and will continue to do all we can to afford his care and get him the best.
That is my soap box.. Get all the facts. Get all the information you can before sending money to people you read about over the Internet. If you feel inclined to donate, donate to the local NICU. Give them gas cards to give to the parents, give food to the food bank, make care packages. Those little things would have helped our financial situation way more than anything.
Soap box over... if you made it this far.. you get a cookie!
We were poor, struggling, students/newlyweds. We were not expecting what we got. Dallas had a good job and I was able to get a job at the same place. I went into work one day and was told that our department was downsizing. I was the last one hired. I was layed off. I was ok, because Dallas still had his job and I was in school so we still had my insurance and his insurance. A week later he was layed off. This was the first part of September 2005. The company we were working with kindly said they would allow us to keep our insurance till October 1st and then we were on our own or paying cobra. We still felt we were fine because I was only 21 weeks pregnant and covered under the insurance at school. Things were fine.. Things were fine.
Fast forward to the last weeks of September. September 19th, I woke up that night not feeling well. Sept 20th my doc said take it easy, it was nothing. Sept. 21st at 1:24am it was something. A 1 lb 11 oz 13 inch long little boy. No bigger than a ruler and skinnier than a pencil. And we owed 20 percent.
Ty was lifeflighted to LDS hospital, stablizied and this is where we started our medical journey. Once we were dropped from the insurance from Dallas job we were kinda in a panic. But something that doesn't come out often in reading about micro preemies is that babies born under a certain weight automatically qualify for social security. Social security guarantees these babies medicaid. Fact if the matter is.. these people will get their money. There is no way anyone can pay 20 percent of what it costs to keep a 25 weeker alive. There is no way.
This was written October 2. 2005:
Today we got the first "bill" for any of Tyler's hospital fees. This bill was for his Life Flight from Alta View Hospital (Sandy, Utah) to LDS Hospital (Downtown SLC). The bill is for: $9,009.14!!!!! Now this statement says "do not pay this amount" so I am assuming this is the statement before they bill the insurance company. So I don't think we will be asked to pay this amount, but we will see...
This was not for any real service JUST getting him to the other hospital safely.
While at the hospital for Tyler we received level 4 NICU care. The list, not including procedures like PIC lines and transfusions because there were to many to count in those first few days. But major procedures.
- PDA heart surgery
- Head Ultrasounds
- ventilation 93 days worth
- life flight transfer by helicopter and life flight transfer to PCMC by ambulance
- Reservoir placement
- multiple eye exams followed by surgery on his eyes
After Insurance was over in October we had nothing. Hence when the medicaid kicked in we were ecstatic. We knew that Ty would be taken care of. We still had multiple visits from the business managers there and billing people but there was nothing we could do. Those bills would reach over a million dollars.
Our cost and medical drowning came from me. I was not covered by medicaid. I was not covered by anything but cobra and my meager health insurance plan by the U. They don't cover some of the things that I had to do. We were able to pay for cobra but again you have a portion of that that you have to pay along with the premiums.
For me alone we owe ( and still do owe) somewhere around the 50-70 k mark. I still get bills that the U insurance didn't cover that we didn't know about. I had to have plastic surgery to close my c section, I had a wound vacuum keeping it closed. I had to have nursing care. I had to have a breast pump for Tyler. We weren't made of that kind of money.
What we have found though was that we could let the medical bill eat us. We needed to live. Our day to day living expenses are what caused our financial woes. Dallas was not working. He had been laid off. We were living off what credit cards we had and what we could bring in. Until I had my C section fixed I couldn't work. But I got a job right before Tyler came home to help us make ends meet. Dallas was doing contract work after contract work and we were staying afloat but barely. We would pay off part of our credit card and have to use it again just to put food on our table. We were paying for Gas to get to the hospital 2 or three times a day. That is where we saw our expenses coming from.
As time went on and we had Tyler home we had other expenses. Because he got medicaid for the first year do to the above mentioned social security our formula was covered by WIC. Dallas got a new job and we had great insurance where we paid 20 percent. BUT when medicaid ended for Tyler so did the "free" health care for him. The stuff we paid or have been billed for included shunt placement, shunt revision and 2 skull reconstructions. The last reconstruction alone was 90 k. 20% percent of that is a lot. That is just the surgeons portion. We owe for scans taken after his reconstruction because Dallas had a new job in Arizona so we were no longer covered.
Before moving to Arizona we put together our debt. It was large. It had ruined our ability to purchase anything on credit. This is including a house or a car. We have had me work to pay off some of the debt but we are no where near being out of medical debt. We will have it forever. BUT the day to day living is not like it was then. We don't' worry about that medical debt. We don't worry about that doctor who is still pursuing us after 4 years. Why? Because we can't. There is no way to pay it off.
Moving to Arizona was a hard move for me. Our medical insurance here is SOOO much better than Dallas and I could ever ask for. His work insurance, though an HMO, has been great. As long as I make all the necessary calls and make sure all the needed paperwork is done ahead of time we are fine. We pay extra to have the upgraded insurance instead of getting it in the check each paycheck. It has helped us a lot to have it covered. We have yet to have to pay more than our co pays.
For Tyler, because of his diagnosis of Cerebral Palsy and his vision we are able to get DDD insurance here. Which is basically medicaid. So Tyler is double covered. Why? Well at some point without medicaid children will cap out. He will cap out. He will have a max payout at some point. Brain surgery gets expensive. We may go YEARS without one and then do 2 in a year, like this year. It helps him get services like therapy that usually gets denied in an HMO.
HMO's don't think that water therapy or PT in general is beneficial to a child with cerebral palsy because it is a life long condition. But with his DDD services we do get them and we get what we need. Along with his DDD services we get respite care and other care for him.
So why the long post?
While people do need help in their day to day living with children with special needs, what you read on the Internet is not always what it is made out to be. Yes, financially it has ruined many people. Us included. But we made the sacrifice and moved to a state that allowed us to have better insurance and better state insurance.
We save babies at what cost? It doesn't stop when they walk out of the NICU. It doesn't stop when they are suppose to have caught up by age 2. 9 specialist for one small little boy doesn't stop if we didn't have insurance. I would be homeless to give him that care. There has to be something that works in this country.
Those living in socialistic health care countries don't have worse care. Is it the best for us? People say that they have to wait hours and hours for care in these countries, We waited for 9 hours for something that could have potentially been life threatening. Is it really "better" care because we are here.
I think it is great that people are able to get donations and feel the need to ask for them. I don't feel the need to. If someone like The Doctors want to give me 40 k I would gladly accept it and pay off what is left of our debt so we can keep moving forward. But I feel that Ty's story and his struggles and most importantly his triumphs are ours to share without reward.
Someone once made the comment ( who has a 24 weeker) that everyone should have a Tyler. And that is how I feel. I want to share him with the world. I want to be a advocate for children like him. I want to be a support system for the mother and those going through the NICU. Not asking and begging for help.
We love our son and we are and would go through financial "ruin" if you will to have him hear with us. We would and will continue to do all we can to afford his care and get him the best.
That is my soap box.. Get all the facts. Get all the information you can before sending money to people you read about over the Internet. If you feel inclined to donate, donate to the local NICU. Give them gas cards to give to the parents, give food to the food bank, make care packages. Those little things would have helped our financial situation way more than anything.
Soap box over... if you made it this far.. you get a cookie!
