::headbang::

let me preface by saying yes singleton parents know the hardships of raising children and yes they can, to some degree, understand the complications but if you've never had a preemie there is a different level of understanding and when you have TWO preemies at the SAME time, well that's an entirely different ballgame!

the boys' have severe GERD and severe milk protein allergies. while good intentioned, parents of full term singletons, with no feeding issues, are telling me that my kids' do not have special needs, don't understand why the problem won't "correct itself" and that i should just put a bottle in the crib with my child and "i promise you" they will eat....ummmmmmm, no. and that the government should in no way have to help us pay for the only formula the boys' can tolerate b/c they aren't special needs or have special needs...

so today is major frustration and banging my head against the wall day.

on the brighter side i was able to find a mead johnson rep that will be at the hospital i delivered my boys' tomorrow and has 5 cans of nutramigen AA to give me which should last until they go in for their ph probe study, 24 hour dye/swallow study and endoscope on thursday. i've also found an organization willing to help buy 4 cans of the formula for us at no charge so i'm doing that on monday.

it's just hard, and i know some of you think i'm the drama queen, but DH lost his second income so we are in an even bigger financial hardship then before. granted he's home more which is great for me and the kids BUT we lost our money to put food on the table and yet we still don't qualify for government financial aid, like WIC....

 

Hi there I have followed your post for some time but I don't think I have ever responded to your post. My girls are 6 months and 3 weeks old. I also think we were on best rest around the same time. I'm really sorry to hear about the boys' issues!! One of my daughters had the PH probe done and a suck swallow test. The suck swallow test with the dye was not bad at all. The PH probe was a little rough!! but it gave us a lot of information. My daughter was having As and Bs up to 20 times a day and they were convinced it was reflux. She wasn't allowed to breast feed and was on thickened feeds and zantac after the test we found out she DID NOT have reflux so I'm really hoping you get some answers!! As far as finances I feel your stress We have always been a duel income family but the girls came home on monitors and were still having the occasional spell so I took the year off. We cut the cable, gym membership, netflix and anything else we could. A friend of mine suggested The Grocery Game I think you can simply google it and it will come up if not I will get you the website. It has been our saving grace!!!! we cut our grocery bill down to 48 dollars a week and we are eating better then when we we spending 120 dollars a week. They have a free 2 month trial its worth a try. If you have any questions about it I would be more then happy to try and help ya out Good luck and God bless

 

I'm sorry you have to deal with this in addition to everything else. I think most people don't get that preemies are not just small babies!!!! For those who think they know better, point out that you will rely on the advice of your board certified pediatrcian, but thanks for the input anyway.


Resolving DS's feeding issues was a huge milestone for us and I hope you get there soon too. We are lucky that we can both afford his special formula and have insurance coverage for it. It really does make things easier.


And, for the life of me, I can't understand who is more suitable to get WIC aid than 2 preemies with a parent who is a working, contributing member of society??? Would the boys qualify for either Medicaid or Medicare due to their health needs? I wonder if that would help you get automatic qualification for WIC--in some states, you can do that.

 

i've got that route too, no luck. we have private insurance. what erks me the most is DH risks his life to save those people who are making these ridiculous requirements for income guidelines that are so unrealistic to what things cost...if they are burning to death in their home, DH is going to be the one saving them yet we can't get aid? i don't understand why they calculate income pre-tax, money you can't spend and that goes straight into the pockets of the government?? why wouldn't they calculate the money that you actual take home, deposit into your bank account, etc.??? the spendable income??? i know people who make more money, who have larger homes, less children, children with NO special needs/issues, who qualify for WIC and yet here we are, honest tax payers with premature twins with serious GI issues and can't get a dime thrown at us. it's sooooooo frustrating to me. i want to fly to washington and bang on the doors of the white house until someone listens to me!

 

Well personally I don't think the government should be providing formula or aid to anyone who doesn't qualify. They have requirements and thresholds for qualifications for a reason. If everyone who felt entitled to aid got it, the system would be bankrupt. Perhaps you can work on retooling your budget to cut out extras, such as expensive baby gear, so that you don't have to be in such a tough financial position. You can also call the formula companies and ask for coupons to help with the cost.

 

Are there areas that you could cut back, maybe getting rid of some of the luxury items (internet, cable etc.). What about selling some of the stuff the boys have outgrown on Craigslist or Ebay to make some extra money to pay for the formula. I seem to remember you saying that you bought the boys Britax Boulevard car seats, maybe those could go back and buy something a little less expensive??

Rather than being entitled to some of this stuff, maybe you could take some control on your end and make some financial adjustments so your boys can get what they need.

My DH is a firefighter as well. He doesn't do his job because he expects something in return from the people he saves. He does it because he is passionate about helping people, and he truly loves his job.

Best of Luck to you.

 

We too didn't qualify for WIC because my DH "makes too much". They were baseing it on his gross pay rather than his bring home pay. He works a ton of overtime (has to!) and they were counting that also. Need I mention that the OT may expire at any time. So, we went from 2 pretty decent incomes with only 1 child to 1 income with 3 children and myself as a dependent. And still can't qualify for any assistance. Makes me angry! My LO's were preemies also. So putting them in daycare for the 1st year was a NO-NO! I feel your pain, that's for sure!

P.S. I sent you a FB friend request

 

i'm not trying to say that we are entitled just because DH is a fire fighter it's just that the federal standards are not realistic....have you looked at them? state to state economies are different, there should not be a general rule of thumb for all states because the white house says so.

the stroller and car seats were paid for by mothers helping mothers.

we have a VERY modest lifestyle and live on a VERY tight budget. we've cut back every which way we can and no matter what it's still not going to give us nearly enough to pay for the formula which is 110+shipping+taxes for 4 14.1oz cans that last maybe 3 days.

again, not saying we are entitled to help i just think the system in general should not be so centralized and be more localized to the specific state not the country as a whole because we all know that the cost of living in each state varies greatly, therefor the standards of setting those WIC and government aids should as well.

like i said, i know people who make more money, have less kids and qualified for WIC yet we can't get help to save our lives.

it just bothers me.

 

I know in PA we have different qualifications than those living in VA, so I don't think its that broad? We did get wic, medicaid and ssi, and they didn't even look at my husbands income. They looked at my kids medical issues. We got it up until 1 year after they were born. Unfortunately I guess reflux is so incredibly common that its not considered a severe enough medical issue? I know its hard, it really sucks when you can't just get the normal stuff that people with normal babies get. But it just means you have to try harder....go on craigslist and see if anyone will give you the cans or sell them to you for half price. I do that all the time for my son's pediasure. You would be surprised at the amount of people out there willing to help out. Or, even though those carseats were gifts to you...maybe you could sell them (I have no idea what they would go for) buy cheaper ones and use the extra money to buy some more formula? Just a thought. Good luck!

 

I'm sorry your kids have difficult medical needs right now. I hope the GI testing gives you some answers.

I do understand where you are coming from as far as who qualifies for assistance. We didn't use formula, but DH are always in that category of people who make too much for any type of government aid, but not enough to easily pay for it ourselves. And I understand what you mean about how cost of living varies by state. We live in So. Cal, one of the most expensive areas in the country, where the cost of living is very high. Yet the scale for who qualifies for welfare in California is the same is the same one used in all the other states, except for Alaska and Hawaii. That doesn't make sense to me. There are people not working who qualify for WIC, etc., but then hardworking people often qualify for nothing.

Hopefully your kids will be able to drink something cheaper once they are a year old (maybe soy milk, if not cow's milk). You will get through this! I know it's expensive now, but they won't need expensive formula forever.

 

How does a child or children with relux deal on breastmilk? I dont know if you ever nursed, but there are milk banks and stuff out there..and if they could do better on breastmilk, wouldnt that be cheaper than formula?

My children never had eating problems, so I dont know anything about this..but just wanted to know how they deal with breastmilk..and has anyone tried it?

Brandy

 

there was a mom in my mommy's group who breastfed and her son used the same GI doc as i did and her boy had bad reflux too. it's harder when breastfeeding, at least she said, b/c she never knew when the LO was ready to eat and in order for the meds to work right you have to give them at least 20-30 minutes prior to the feed. she tried adjusting her diet and all kinds of stuff and nothing helped. just when she thought it got better it got worse. she is the one who suggested i see this new GI who visits our area more frequently and is FAR better.

and thanks for the understanding of what i mean by the government needing to alter their qualifications and use state by state economies vs. making a wide range spectrum and have everyone fall under an unrealistic set of income rules that one must meet in order to get assistance when everyone knows that it's far more expensive to live in states like NY, CA, FL and cheaper in other states like GA yet the qualifying standards for WIC are all the same, it's a federal, not state, regulated program. :/

 

thanks
we tried soy formula and organic but that didn't work which put us on the nutrimagen and it helped for a bit but got worse...so far *fingers crossed it's only been a few days* the nutramigen aa (amino acid) is helping A LOT it's just made of gold and sprinkled with fairy dust.

they've got, i'm estimating, about 4 more months of needing formula...so we just need to get through this really really hard time. hoping to find something more reliable than the random donation. regardless when we stop using the formula i'm going to continue my protest to the government, local, state, federal, about the ridiculous standards to qualify for assistance. someone needs to stand up and something needs to change!

 

Something does need to change, and in this situation I don't think its necessarily the government. All the time, every day people have to make sacrifices to support their families. As I said earlier, maybe the internet needs to go? Maybe you could get a job to bring in more income? Maybe you could move to a cheaper nearby state such as GA? As someone else suggested maybe you could sell the Super expensive car seats and buy something more practical, and save the difference. Another poster suggested Grocery gamer. There are options out there, you just have to be willing to get over your pride, and do whatever it takes to get what your boys need. Complaining about it, isn't going to get you anywhere. Rather than focusing on what everyone can do for you, why don't you look at what you can do for yourself (and your family).

People have offered you help here in the form of how to cut back on expenses, and your only response is how unfair the entitlements programs are because your family does not qualify. Like Trish said they have those qualifications in place for a reason.

You said yourself, it's only 4 more months, so maybe making a few changes in your personal financial situation until then would give the boys the formula they need. Sounds like the wants need to be put on hold for a bit.

You should be thankful your boys are as healthy as they are. Not to downplay anything you are going through, but if they truly were that sick you would instantly qualify for assistance. Obviously that is not the case.

BTW, how do you sign up for this Mother's helping Mother's thing? I would love a set of cars eats worth over $600.

ETA: Based on This post from yesterday about car seats, it sounds like you paid $750 for the seats and stroller yourself. :huh: Hmmm......

 

not true in regards to them being sick to qualify for assistance...medicaid in FL is income related, not medical...i've researched it, unless someone lied to me somewhere.

we are making sacrifices, we can't afford groceries, my mom buys them for us weekly. we are doing what we can and looking in every direction believe me i'm not trying to make excuses or blow things off, even though that's what it may be coming across as. i AM however still annoyed with the standards of aid. and we can't move to a different, cheaper state, we've thought about that...DH is certified to work as a FF in FL only, no other state. he leaves now we loose retirement and pension and health benefits forever...he's not fully vested yet, why would we walk away from that? it might be cheaper to live in GA but the job market is far worse in GA than it is in FL and that says a lot since there's no work here either.

if i went to work who would watch the kids? daycare is far too expensive and with a varying working shift for the fire department that's never the same it's hard to find an employer that will work around a schedule that changes on a weekly basis...i'm not saying it's impossible just extremely difficult.

in regards to mother's helping mother's and our car seats AND stroller that they helped us pay for, it's a donation. i am disabled, can't work...so i have a wonderful live saving woman that knows and understands our situation and is helping us in anyway she can.

 

I have lived in FL the majority of my life and it has by far some of the lowest cost of living in the states. It's not even remotely in the same category as NY, CA. Look you can make excuses all day long as to why you need help. The fact is I'm sure you have some luxuries that you could give up (internet, cable, cell phones) that would go a long way to making ends meet. Formula is expensive, most of us have been there done that. We were both unemployed the first 4 months of my kids' lives, so I know what it's like to struggle financially. We used every bit of our savings and then some to get us through, but nowhere did I think that the government should buy food for my kids. You need to get on the phone with the formula company or have your doctor contact their rep, I'm sure they can provide you coupons or maybe samples to get you through the 2 weeks until the study. You need to take control of the situation and make the best of it instead of griping about what you're not getting.

 

I think "headbang" was an appropriate title for this thread.

 

I'm sorry you're having a hard time figuring out a way to pay for their formula. It's hard to know your kids need something for their health and feeding and not know if you can afford it. I know many parents on here can agree with that whether it's food, medication, medical bills, etc. There are so many woman on here that have had to go to great lengths to get their kids what's needed. As far at the Nutramigin AA, I'd be petitioning my insurance company to cover it after having my GI Dr. write a letter of medical necessity. I'd also be collecting any and all formula coupons I could to help pay for it. I know I get them in the mail a lot and often give them away. Maybe you could make a plea to some of the ladies on here or Craigslist/Freecyle and see if anybody is willing to pass them your way. I posted a link when you first asked about it that had a ton of it on e-baby for much cheaper than the going rate. I'd look at that as well. I am curious though that if this works for your boys if they really will be able to be off of it in 4 just 4 months. I'd be interested to hear what the GI Dr. thinks the next step would be after they are a year old. We had a tough transition to something that my DS could drink and he only had mild milk protein allergies and was on regular Alimentum. I'm glad that you've found a new GI Dr. that seems to be taking you more seriously as well and that is closer. Sounds like that other one wasn't the best one even if others did say he was the best. Good luck figuring it out.

 

Ain't that the truth. :faint:

 

You know Kristine,
You really need to stop for a minute and count your blessings. Your babies were born at 35 weeks, not 29. You don't have babies who are going to be permanantly disabled because they had bleeds in their brains after they were born, or chronic respiratory problems because of ventilator associated pneumonia, or god forbid problems like cerebral palsey. My cousin has down's syndrome. She is a special needs child. Your babies have GERD. That is not special needs. My babies also have a milk allergy, not special needs. Your babies are going to make it through these rough months with likely no long lasting problems. And really? What is your evidence it is such a severe milk allergy, did they swell up around their mouth and tongue after coming in contact with milk products, severe rash, anaphalaxys? Did they have allergy skin testing? I'm just curious where all these diagnosis come from since there is a new one every week.
I'm just offended at the way you throw all these words around like special needs when your babies are a healthy weight and are meeting all their developmental milestones. You have no idea what mothers of special needs children face on a daily basis. Do you have to suction out their tracheotomies all day long? or put feedings in a gastric tube? Didn't think so.

 

nevermind...i obviously can't seem to vent frustrations w/o ruffling feathers.

i have petitioned the makers of the formula and we have qualified for helping hands however it save us only 50 dollars per case so 110+shipping+tax vs. 158+shipping+tax for 4 cans that are 14.1oz. i have also petitioned our GI and they are in the works on writing a letter to our insurance company to try and back them into the corner to pay or at least supplement the cost of the formula.

as for my pride...we are going to food banks, salvation army, anywhere we can.

and i'm not sure where in FL you lived in but this area is NOT cheap and if given the choice we would live in a cheaper state...we hate it here but it's where DH works and where we get benefits via work, i.e. pension and healthcare.

we have minimal luxuries and i know how hard we all struggle to make ends meet, having twins ain't easy and it's not cheap.

i'm not special, not trying to say i'm special just venting about what's going on.

i'll end it now so you can all breath a sigh of relief that i've shut up.


edited to add - you can close thread anytime now. i'm all done...tired of assumptions, and you're tired of me.
thanks for the helpful support and tips from those that did though, i appreciate it!!!

 

That's the whole point, Kristine. We are trying to give you helps and tips, but you don't want to hear it. You want someone to agree with how wrongly you are being treated and how it's not fair.

For the record, I lived in South Florida most of my childhood,Central Fl after I got married and a few other places in between. So I think it's fair to say that I have a pretty clear picture of cost of living down there. FL is cheap compared to the majority of the country.

 

Kristine I hope you don't have this thread closed cuz i have so much i want to say but no time to type it all now

 

it can wait then....i'm sure you're not the only one that wants to say something...so mods, keep it open, please.

 

What exactly is your problem, and others for that matter? It is obvious you aren't posting on this thread to offer support to haleystar. You still seem hung up on things that happened a month ago. Mothers post venting threads here EVERY day and they are usually met with understanding, supportive replies. Instead you and others just want to make snarky posts, which are uncalled for IMO. I seriously doubt haleystar needs a lecture about sacrifices from some strangers on the internet who don't know her but rather who just want to constantly judge her. And do you seriously think buying a cheaper brand of car seats would really make much of a different financially for them in the long run?? That is a one time expense, and one that was paid for by an organization where she actually did qualify for help, and that still isn't good enough for you. In fact you seem a little bitter about it. Whereas this formula is super expensive and will be an ongoing expense for months to come. And your comment that DID downplay her boys' ongoing problems....my god the nerve of some people :headbang:

Haleystar, I don't blame you for being frustrated about your boys' situation and having to buy such expensive formula on only your husband's income. I feel for ya momma! And I say vent here anytime you want. If it pisses other people off, then that is their problem! :rotflmbo: :hug:

 

Well by golly if I didn't know any better I would think you know exactly what her husband's salary is and their mortgage too for that matter. Oh wait, they are probably one of those people who bought more house than they can afford so to heck with them.

I do find your second sentence very funny though, about how you are trying to give haleystar help and tips. It's funny because I didn't really see any helpful comments from you yet in this thread...

 

You're making some broad assumptions and misrepresentation on what I said. My point is, that it's not an high cost of living state.

Perhaps you didn't read closely enough then. And I didn't say I ..I said "we", as in the many posters in this thread. Maybe it's inconvenient to hear, but selling things and cutting luxuries is good advice especially if you are in financial trouble.

ETA: I would also watch your tone when addressing the mods/admins of this site. The reason we have good advice is because we have been around for a while and know the history of many posters.

 

OK... but if you are barely making ends meet, not able to put food on the table, then maybe it's time to look for other career paths, other fire departments in the country.
My XH is a firefighter/paramedic. We weren't loaded by any means, but did fine. He should be able to roll over his 401(k) to a new job, I'm not sure what happens to the pension though. But seriously, if things are that dire, then look elsewhere. I don't know if firefighters are just paid incredibly low where you are or what, but take a look around the country for other opportunities.

 

he is firefighter/emt, florida fire fighter certificates are only valid in the state of florida. you move to another state you loose pension, it's a florida pension. they aren't paid great that's for sure but the requirements for fire fighters varies from state to state, county to county. he would have to re-certify in another state to move which costs money.

 

Kristine, I'm sorry you are finding yourself in difficult times.

I know this will not come across as supportive, but seriously, when all of your threads turn out this way - can you see your role in this debacle?

The ongoing situations you face remind me of The Boy Who Cried Wolf. Every day is drama for you, it seems, so when something is truly wrong and you truly need help and support - you are faced with questioning. Try to step back and think about how many people post on TS every.single.day - and really, how many of their threads turn out like this? Very, very, very few.
How many of your threads take this turn?

Perspective is important when communicating with other people.

When you post about your 35-week preemies, remember that there are parents on here whose twins were born at 24 weeks. When you post about your kids' special needs, remember that there are parents on here with kids who have signficant disabilities affecting their ability to talk, walk, learn, live independently, etc. Yes, your kids were premature. Yes, your kids have special medical needs. Yes, you need support. But, your defensiveness and constant cry of wolf results in many, many people not taking your cries for help seriously.

There are many financially smart women on this board - I'm sure if you posted your monthly income and your monthly budget, many of them would be happy to help you figure out what can be cut, what is a necessity, and where the holes are.

 

Yes, it costs money. But if you are barely scraping by, what's the point in staying in the job? Go where the money is.

 

I know that the departments here put you through their own academy anyway (and consequently certify you), so you don't have to have state specific certifications to be hired. They will also take into consideration past experience from other departments. I would venture to guess that is how most departments are around the country. How old is your husband? If he is less that 30 (I think the actual cut off here is 37) he has plenty of time to move to another department and put 20 years in for retirement there, and still get a pension. There are always options, you just have to be open to seeing them.

If being a firefighter isn't enough to support the family, then maybe other career paths altogether would be an option? Or Maybe your DH could go to medic school and greatly increase his salary, and career opportunities.

 

I feel like this is yet another thread where people are piling on the original poster. I have seen soooo many threads here started by similarly frustrated mothers, and I don't recall anybody suggesting that they just up and move to some other state (if I am wrong please show me a link), as if that is something easy to do, not to mention such a move would most definitely add stress to a marriage and family. So in that regard, I think others here have been making some pretty broad assumptions themselves.

Haleystar is taking her sons to get a battery of tests next week, she is following her doctors advice, and she is doing what she can to get them the best formula for them, but it still doesn't seem to be enough for some posters here. I usually find this forum to be very helpful and supportive, but apparently not for all posters.

 

Since you keep quoting me I'll bite. The reason many of Kristine's threads end this way is because regardless of the issue at hand (and there have been many), advice is given by people who take the time to want to help. And all we get in return is "yeah, but". It seems like no bit of advice or input is good enough unless it involves a :hug: and agreement with whatever the latest issue is. You will find that most other posters will say "thank you" or "I'll give that a try" and that's why their threads don't end like this, because they are open to the advice they receive.

 

:good: There are countless stories from moms (and dads) on this site that literally make me cry. Some stay with me a long, long time. And they all make me appreciate what I do have SO MUCH MORE. The medical issues, the losses...the women that have big enough cajones to leave a bad situation with their twin babies (and even other children, too) and by God, they FIND A WAY to do it - financially, emotionally, logistically. Alone. Amazing what you can do if it means enough to you.

The only thing that makes me sad about your situation is that you appear to have two very lovely, very healthy little men and you just can't seem to fully enjoy that fact. Be well. Let them be well. And find a way to make it work like every other parent out there.