Monday, May 18, 2009

Goodbye For Now

After watching the video that TPD posted (which has been removed) on my blog, which I feel is a serious threat, I am going to stop blogging for the time being until I can figure out what I want to do.

It's a sad day for me. Over the past 2 years I have received so many emails from people who have been helped by this blog. I have made some wonderful friends as a direct result of this blog as well.

It took one jerk to ruin it all.

Thank you to everyone who has been with me through it all.

Helen, I am so very sorry that this happened to you! Thank you for all that you've done for us parents over the years!

Moving On

After cutting through all of the bullshit (sorry-I'm in a mood), it seems that most can agree that resuscitation should be a personal choice. Agreed?


If the conversation was to end there, most would be able to take a deep breath and go on discussing the long term impacts of prematurity and how they may affect ones life and the lives of the family.

Wait. Then we'll get stuck because some people don't like the way the statistics are compiled. Some believe that it doesn't tell a whole story and some believe that certain issues shouldn't be considered a disability.

So, we argue about statistics and we move on.

Wait. We'll get stuck again because some people don't like it when parents discuss how hard life can be. For some reason an open discussion of our daily lives leads some to think that you don't love or value your child.


We'll all change and start only talking about the happy, happy, joy, joy parts to our lives. Would that make everyone happy? We'll all just stop talking about the long term issues that our kiddos endure or will face in the future. No more honesty.

Guess what? The issues will still be there. Our kiddos will still have seizures, constipation, mental health issues, CP, blindness, social issues, intellectual difficulties, etc. Marriages will still fail. Families will still struggle financially. Parents who were told that there child will catch up by age 2 or 3 will be wondering how they failed their child because he/she is still behind.

Our silence will solve NOTHING! Does it mean that we love our children any less because we openly discuss the issues? I'm still baffled why people think it will. I love my children, with all of my being. I've devoted my life to them and their happiness. (if anyone doubts this... try homeschooling your own child and you'll see how much I love Paige-lol) Just because I talk about how prematurity has affected all of us, does NOT mean I love her any less!

I don't mind the argumentative nature of the comments but what I cannot stand is the nasty bickering.

We will all disagree at times. Get over it. State your point and move on.

As for attacking Helen. She is merely the messenger. You may not like what she has to say but she backs it up with statistics, none of which she compiled. She is merely the messenger!

Thursday, May 14, 2009

The Financial Impact of Prematurity-In The Media

Some of the on line preemie support groups, and various blogs, have been turned inside out this past week due to some recent media coverage of a few preemies.

First up... The Freemans. They were featured on a recent episode of The Doctor's. Their blog (seems to be mostly authored by Dad) is quite popular among preemie blogs. Kayleigh was born 3 months early in June of 2008. The show featured their story due to the financial impact that prematurity has played in their lives. They were doubly hit when the economy crashed and they were on the verge of losing their home. Many of us have been in that situation. I've been very open about our financial hardships, beginning with the NICU bill that was not covered by insurance and continuing for the past 10 1/2 years of medical bills due to on going care. Their story is NOT unique.

So why the buzz in the preemie world? Well, they used their blog to solicit donations all the while never disclosing how the money was being used. Some have commented that they never sent thank you's after they've received said donations. I am not one of those who donated so I don't feel qualified to comment on any of the above.

What I do know is that many of us are one more procedure away from being completely broke. Unlike decisions we make on our own medical care, as parents we cannot chose to withhold a medicine or a procedure because we cannot afford it. They are our children and we do everything we can to improve their quality of life.

I think the frustration in the preemie world over this family is that "their story" is "our story" too. Many of "us" need help but no one is beating down the door and tossing cash our way. Some people felt that the family was still spending money on extras (getting nails done, etc) and they shouldn't be doing so since they were receiving donations. (Since I don't know how those extras were paid for I also won't be commenting on it)

Some states have wonderful resources such as SSI and medicaid. But what about those who live in states where income is used to determine if you qualify? What about those who live in states without waivers? What about all of the bills incurred after the NICU? Co pays? Medicines? Living on one salary because your preemie cannot be in day care? It all adds up.

All in all the show did a fairly good job of showing what life is can be like for people without insurance (or under insured) when a crisis hits.

At one point Dr. Sears talked about a late night encounter he had with a father in the NICU. The father was questioning whether or not it was all worth it.
"I know as doctors and pediatricians we try to do everything we can do for these little babies but sometimes we forget what happens outside of the hospital, what the cost can be for the whole family. This reminds me of a story. I was spending the night in the neonatal intensive care unit with a family a few years ago and very similar situation as your guys (pointing to the Freeman's). The baby born 3 months premature, barely over a pound and you know, the child was only a few weeks old and had all of these procedures and surgeries. The dad came in in the middle of the night and we were sitting there together and the dad just kind of broke down and he said, "You know, is this going to be worth it? You know I don't know if we can pay for all of this." and seeing their little baby go through all of these things and not knowing and probably even doubting if there is even going to be a good end to all of this. It's just really tough."

At that point I held my breath. He seemed choked up, like he really wanted to say what was on his mind. But it ended there and I let out a sigh. Although it wasn't the right time for that kind of discussion (being that it was a show on insurance), I really wanted to hear what was on Dr. Sears' mind.

As for Kayleigh... she passed away on May 11th, having never left the NICU. You can read her blog here...

Next up (in a few days) will be a post about the People Magazine article on the 6 micropreemies. Please hold the comments until then as I'm sure you all will have a lot to say once you hear what I have to say.

Wednesday, May 6, 2009

Stacy, where are you?

Lately, I've gotten a few emails asking that very question. They coincide with facebook posts to my wall asking, "what happened to TPE?"

First, I need to apologize to those who I have not responded to. I am reading my emails and appreciate every one's concerns. I'm so thankful for everyone who follows this blog and I don't want my absence to convey a different message.

Second, an explanation is warranted. Part of the reason for the lack of posting can be attributed to the fact that homeschooling takes up most of my free time. In the near future I'll be devoting a post on the subject of homeschooling and we can all discuss that further.

Another reason why I haven't been chatty on the blog is due to the stress of our current situation. Both hubby and I have been bit by financial and medical issues that sucked the energy out of me.

But in all honesty, the biggest reason for my absence is the sadness I have been feeling with regard to the world of prematurity. I am an optimist and can be found looking for the bright side or upswing in every situation. I'm always looking for the study or the report that shows promising information in regards to outcomes. They aren't there. This past month, within the preemie community (bloggers and people on the on line support groups) the sadness was overwhelming. We saw the death of older children due to complications from their early birth. Other parents were left wondering how this could happen, thinking that their child was safe once they were out of the NICU. Pregnancies ended early and resulted in parents making decisions to not resuscitate. New preemie parents are joining the groups in record numbers. Parents of toddlers are wondering what they may have done wrong because their child did not catch up by age 2 (like they were told in the NICU). Parents of older children are realizing that their child will not be making the recovery they had held out hope for. Children receiving diagnosis's of CP was more than some parents could handle. Marriages are falling apart due to the stress of having a child with special needs.

Is this past month any different than all of the months in the previous 10 years since Paige was born? No. And that is what has me down. Day after day, month after month, year after year the cycle continues. What has been learned from all of early births? Why are statistics not improving? There are times when it just gets me down.

I will be back soon. I just need time to recover. I started to feel that there was no use to continue this blog. I have changed nothing. (pretty sad that I thought I could actually make a difference when the problem is so huge) Then I realized that there is still so much I have to say. I started this blog because I was outraged at the fact that parents were being told that their preemie would catch up to his/her peers by age 2 or 3. Those of us in the trenches know this is not true and I feel, now more than ever, that something needs to be done about this. There are still parents blaming themselves for the outcome of their preemies. This should enrage you all as it does me.

Thanks again to all of you who have written to me to ask, "Stacy, where are you?" I'll be back soon and with the help of all of you, we will once again bring light to the subject of the long term issues related to prematurity.