A community of people dedicated to the open discussion of the long term effects of prematurity.
Thanks for sending us to Karen's blog - wow, so nice to hear that she feels helped by hearing all sides, not just the "M" baby side.She is right - best to know what the possibilities are for her child then to be blindsided later.I've always felt that the "not knowing" part of this was always the worst. You wait and wait and wait - finally you get a diagnosis, and although it's not what you wished for, at least the enemy is named and you can start to deal with it.I wish Karen and her daughter the best.
I just visited Karen's blog and am delighted to meet another kindred spirit!Wherever this road may take us, it is good to start the journey knowing the "lay of the land." Karen understands this.I want to echo her gratitude to everyone who is participating in this dialogue (which I hope continues -- after a short break -- just long enough to let some of us clean the house, do the taxes, and regain our strength.)Karen understands that empowered parents (who ask tough questions and go fearlessly where the information takes them) will be the best friends and most powerful advocates their children could ever have.Power to the Parents! Brava Karen!
Thank you so much ladies...Stacy I do feel you all here with me, it's funny but you all were already with me just because you cared enough to share your experiences.I know you'll all understand when I describe sitting up at 3am wondering how on earth I'm even going to begin dealing with this...but as Stacy mentioned I'm lucky enough to live in a time where I can turn to my computer...so there I was, in the dark, and I found these discussions that began to shed some light. I have my hope still - but I also have a name for those "scary things" that were playing right outside my field of vision. They're still as scary, but thanks to all of you I can see them now. You've also given me something that helps maybe a little more...you've helped me to understand that there's nothing "wrong" with me for having these questions. Cassie's docs are thankfully very informative and they seem to try hard to balance optimism with reality...but out here in the un-NICU world people either dismiss my concerns or look at me like I want something bad to come of this...for pete's sake all I want is to know what kinds of things might happen so I can try to be ready for them and know enough to help my daughter (and my family) if they do! Don't get the wrong idea though - there's nothing strong or fearless about me. I am scared to death and if people could see past the "tough" face I put on everyday they'd see a big blubbering mess shaking in her boots trying her best to hide away in a corner somewhere!Karen
To Karen,We were/are all still scared, but there are ways of dealing with it.FWIW, here are some of the things that helped me, and others, deal with the dreaded *dread.*Aerobic exercise: I started exercising just to lose all the weight I gained during pregnancy (only to deliver a 2 lb. 13 oz. baby). I had to start small with something I could do while housebound.I started jumping rope -- 2 minutes, then 5 minutes, then 10, then 15 to 40 minutes a day...and it made all the difference. I no longer had quite so much adrenaline left over to worry about Ed.When I could, I went running and felt like I was "escaping." It was, at first, a guilty fantasy. But then the guilt vanished.Sometimes people earnestly ask me what they can do to "help" new mothers of preemies. I tell them that they should get these moms personal trainers. Also travel agents and high quality respite care so that the moms can take a 2 week childfree vacation each year. It is hard to think of such things now, but the time may come...I would also now add that you might consider taking resveratrol (a dietary supplement that seems to override various risk factors and increase lifespan) and omega 3 fatty acids, (helps treat almost everything, especially stress) as supplements. I like Norweigan Naturals omega 3 and Source Natural resveratrol -- but there are other choices out there.Many preemie mothers have been helped by Prozac or Paxil. I wouldn't take these as a first option, especially if there is a possibility that you may become pregnant while taking them, but if all else fails...I also think one of the most important ways of dealing with stress is *sleep*. If there is any way to arrange some long unbroken sleep times (and I know this is hard for *any* new parent) go for it!Good luck, keep blogging, we are with you all the way!
minor correction to post above:It is Nordic Naturals that makes the Omega 3 supplement.
I hope no one minds if I come to the "trench" to vent. Had a crap, crap day.I hate the way prematurity has changed my parenting. It has turned me from a clam, reasonable person into a raving launitic - mother bear syndrome I guess. Why do buracracies (?sp) make it so damn hard. Being middle class they think you can pay for everything and do everything, all the time, for all your family. If you don't or can't they lay the guilt trip of funding issues (yes, I will scream if I hear the words lack of funding again), believe me I have enough guilt over my daughters prematurity and disability to last me a life time - do they really think that I need more! I'm sure that schools think that when you become a mother of a disabled child you loose all of your intelligence. I'm sure that if I sent my girls to school grubby, with no materials or lunch the support services would be layed on. Why is it when you are trying so, so hard to balance your work/life commitments to give your child and family everything physically, time wise, emotionally you are penalised by refusal of support services, because they think that you can just click your fingers and have another few hundred dollars out of your budget to provide for something else again through the private sector. It is sometimes the families who are trying their best to provide whatever they can that need the occasional support. I'm just to proud to talk about our own family funding issues with nearly complete stranges. My daughters disability will never, never go away. Her brain damage is here to stay- why can't they see that and work with me to support her to reach her potential. I'm sorry for the out burst but I just needed to calm my emotions and put on that "brave" face before I collect the girls from school and face another round. Why haven't I learn't to play the game yet?
To Anonymous:I think when we *all* take off our "brave" faces and start telling the truth, en masse, we will see action. If we were all there with you, lawyered-up, you bet they would pay attention.This isn't a game anyone should have to play alone.
Thanks Helen, I have calmed down somewhat. Do you have any knowledge of any good articles that refer to VLBW, PVL, IVH, CP and neurodevelopmental and schooling outcomes? I would greatly appreciate any refrences so I can show the school that my concerns are real and validated. Thank you in advance.
Dear AnonymousSorry it is crap. Truth is - only a very few of us, in our own ways, are prepared to shine a light on that crap and we all get a kicking for it.We get told we should be grateful - don't ask me what for. I really don't know and care less.We get told at least we HAD a baby - think of all the women that didn't even have that..and that helps me how? I once, 11 years ago, when someone asked if they could "help", asked them to do my weekly shop at the market. They came back and said they wouldn't ever do it again. Thanks - nice.The list is endless. We adore our children but don't ask us to adore the stress and the strain, the long nights, the hospital appointments, the arguments, etc etc.As as song says " It's my party..and I'll cry if I want to". Well, these are our lives and sometime we want ..and need.. to howl.We'll be here.
To anonymous who asked: "Do you have any knowledge of any good articles that refer to VLBW, PVL, IVH, CP and neurodevelopmental and schooling outcomes? "I sure do, a whole computer and two rooms of filing cabinets full of them. I could either give you those references on "the preemie experiment" blog or you could contact me privately at Helen1144@aol.com and I could then email you some articles directly. It would help to know a few more specifics about the situation so I could send you the most useful information.
To Anonymous:My preemies are about grown now, and if I had all this to do over again, I would hire a lawyer to handle all the bureaucracies.I spent hours learning special ed laws only to have them changed every few years. I wrote IEPs myself so nothing got left out at the official meeting. Then, there were IEPS that needed correcting and IEPS than needed enforcing. At the time, I didn't think we could afford such a luxury as legal assistance, but now I see it as necessity. I stayed home to take care of our severely disabled child and have only worked part-time sporadically since. So there is no disability insurance for me if I become disabled -- and barely any retirement.All the special-ed programs have the kids home so early, I don't see how both parents can work. Some long-term planning would have helped. It is all too time-consuming to figure out on your own. Like other middle-income families, we didn't qualify for a lot of things, but we were fortunate to get our son in a waiver program. We could have put him in an institution, but I had rather be "poor" than let my child grow up minus a family atmosphere where he is treasured regardless of the things he can't do.
PM, can you say more about a "waiver program"?ThanksChris and Vic
The waiver programs would have been things like "Katie Beckett" - the child qualifies for services and it is not based on family income, but rather disability. This was put into effect under the Reagan administration, I believe, because of a little girl in Iowa (Katie Beckett) who could not leave the hospital due to her medical needs. As soon as she would leave, she would have been ineligible for services at home to sustain her. This of course, cost probably hundreds of thousands, if not into the million dollar range with her in the hospital, before the legislators realized through advocacy of her mom, that having these kids come home with medical supports was more cost effective.Katie Beckett who this program was named after, was a preemie.
pm said "I stayed home to take care of our severely disabled child and have only worked part-time sporadically since. So there is no disability insurance for me if I become disabled -- and barely any retirement."I HEAR YOU on this one!! Ugh. So many mothers in this situation end up financially destitute, and especially in the event of a divorce. Intelligent, educated woman become caregivers, and lose everything to care for your child at home because you believe it is the best thing for them.My daughter has status epilepticus seizures that were never well-controlled, so even though she might have been at school, I was close by in the event of a seizure. No one can be employed and do this!And I agree, legal assistance should be a given - you get walked on by the social service agencies, schools, etc. because they are hoping that if you don't know what services are there, you won't ask, and if you don't ask, they don't tell - maybe not even the schools as much as it is social services. They DO try and guilt you into thinking you should always be doing more with less.Let me just say that as a nursing student, I've had the opportunity to work in several nursing homes with the elderly, and 95% of those I've cared for are far more functional then one of my daughters, and yet, because she is my daughter, no one seems to think that her level of care is "caregiving" but rather simply "parenting" - this is NOT parenting in any way, shape or form. The support is horrible if you are a biological mother.
Karen wrote: "Don't get the wrong idea though - there's nothing strong or fearless about me. I am scared to death and if people could see past the "tough" face I put on everyday they'd see a big blubbering mess shaking in her boots trying her best to hide away in a corner somewhere!"We all can relate. Helen had some great suggestions regarding excersise. Her and Chris have more energy than I ever had. If you can be active, it's worth it.Me, on the other hand... I took Tylenol 3 (and stayed under the covers as much as possilbe) until hubby was so concerned that he made me stop taking them. We lived 90 minutes away and I didn't have any way to get to the hospital. I had a company car that I had to give back when they realized I wasn't coming back (can't blame them). I know this is going to sound strange but... try to get as much sleep as you can now, while she is still in the hospital. There will be plenty of time for lack of sleep when she comes home. I would call the hospital every night around midnight (right after they weighed her) and then would head up to bed. Keeping you in my thoughts.
Anonymous said... I hope no one minds if I come to the "trench" to vent. Had a crap, crap day."Anonymous, you are always more than welcome to vent here. I am so sorry you had such a crap day! Today is my crap day, so I'm right there with you.As far as financial assistance, we have never gotten any. "They" say that hubby makes too much. But they never take into account all that we pay out. We've been told to get a divorce so I can claim to be a single parent. From what I've learned from other single parents, the services and financial assistance is still not there.And, each specialists thinks they are the most important. So, when one of them suggests something for Paige and I say that we cannot afford it because we are doing something that another specialist ordered, they look at us like we are horrible parents who are choosing to not take care of our daughter.ARGH!!!!
Long Time Listener said, "We adore our children but don't ask us to adore the stress and the strain, the long nights, the hospital appointments, the arguments, etc etc."I completely agree with you! I can't even begin to tell you how many times I've been made to feel like I didn't love my daughter because I was venting about everything else.
Chris and Vic said... PM, can you say more about a "waiver program"?HI Chris,Every state has a waiver program but every state varies the way you qualify. We have never qualified for it, even when Paige was diagnosed with epilepsy.If you google "Katie Beckett" followed by any state name you will get the site of the government office that handles the waiver program.
Terri wrote: "because she is my daughter, no one seems to think that her level of care is "caregiving" but rather simply "parenting" - this is NOT parenting in any way, shape or form. The support is horrible if you are a biological mother."So true Terri! When we were thinking about adopting (before son was born) a "hard to place" child we were told that we would never have any out of pocket expenses, that the state would take care of it all! But, they won't help us, one bit, with our own child!And, let me just say, where is the respite care for parents of children with mental health issues?
PE-This does not relate to the topic at hand, but I wanted you to know that you, and others like you, have inspired me to begin my own blog! I am not able to contribute to the issues surrounding raising a preemie, but if you "meet" other moms coping with infant loss you might want to point them my way. I would want you to warn them though that I will be sharing stories about my living children as well and so if that is painful for them I would want them to avoid my blog.Here it is:http://lossesandgains.blogspot.com/My best to you as always,Lori
Chris,Our son has been enrolled in the Elderly & Disabled Waiver program since he was 18 months old. He gets it due to his significant disabilities which they call "institutional deeming," meaning he is institution-eligible. The program provides Medicaid insurance which serves as his co-pay since we already have an insurance program, but as you know, those co-pays add up in a hurry. I also receive respite care, meaning he gets a part-time caregiver so I can have some time off. That's when I do my grocery shopping, dentist and doctor visits or just plain go back to bed - not often! ha.ha.
TPE- You DO provide an invaluable service by informing people of 'the realities' of having a preemie. Just think how lives might turn out differently if every pregnant woman could read your words and learn from your experienes.Personally, I don't have kids and never wanted them and for the life of me I don't know how parents of preemies and micropreemies live the life that has been thrust upon them.One of my close friends had a sister born with numerous severe disabilities. The doctors told her parents she wouldn't last a week. Now, more than $23 million and 21 years later, she's still here. Parents are broke and live paycheck to paycheck. Retirement? Gone. Insurance? Capped out years ago. Cost of therapy (including suicide counseling the entire family has been thru). Stratospheric.When his parents pass, my friend will have to assume care for his sister. Try explaining that to someone you're trying to date and form a long-lasting relationship with. He's 25 and already stressing about the future and how he'll do it.Stumbled across you and several other preemie blogs by accident and have stayed out of curiosity and looking for happy endings where the kids do get better and 'catch up' after 2.It's been sorta depressing, cause it never seems to happen.Costs in terms of money, sadness, loss of the life you used to have before the preemie came along and the condition of the child as well. Makes me glad I never had kids.And I've also started praying for all of you as well. That, somehow, life will get easier or some special angel will come to your financial rescue.Sorry, I'm rambling.In closing, thanks again for the courage and candor you use to discuss your life and the lives of your family. I have a feeling your blog will help more people than you'll ever know.Peace.
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