Tuesday, January 8, 2008

One Year Later

Today is the one year anniversary of the day I started my blog. I still can't believe that one whole year has passed.

I started this blog driven by extreme emotion.

Extreme sadness-after 9 years of listening to new preemie parents at the beginning of their journey. I was, and still am, so very shocked that the preemies of today seem more affected by their prematurity, while they are still small. A diagnosis of cerebral palsy seems to come much sooner than it did 9 years ago (Paige's generation). I'm amazed at how many kiddos have brain bleeds now, compared to 9 years ago. Kids coming home on oxygen seems to be more common too. Why is this? Why aren't preemies coming out of the NICU in better shape than they did 9 years ago? Hasn't technology improved? Why are preemies still being diagnosed with cancer? Cancer that is a direct result of prematurity. Why can't this be stopped?

Extreme frustration-in our daily dealings with living life with a preemie and the long term issues related to prematurity. Not being able to get help for our child, in many areas, due to the lack of knowledge that the medical community possesses regarding older preemies, crushes our hearts. We are not alone. Preemie parents have little support as their child ages. School issues, breakdown of marriages, insurance issues, financial woes, sibling stress... the list is much longer and affects the extended family and the entire community as well.

Extreme disgust-at the media for painting a picture of prematurity that is so far from the truth that it is a crime.

Extreme anger-after hearing not one, but many neonatologists, talk about how preemies catch up to their peers by age 2/3. Hearing them speak to parents about their child breezing through the NICU and how that criteria means that they will be fine later in life.

And, the most disturbing aspect to prematurity that caused me to go over the deep end and start a blog was learning that no one, on a large scale, is following preemies to see what they are facing. How can treatment in the NICU improve if the current experiments are not being followed? Honestly... can someone fill me in as to how parents and doctors are making informed decisions if the long term (beyond age 2/3) outcomes are not studied.

I just went back and read my first post, written one year ago. Until today, I had not read it, since the day I wrote it. Wow, it was pretty raw. I can still remember the all of the above emotions running through my fingers as I typed.

I've learned a lot over the past year, about others and myself. I've learned that the world needs balance. We all don't feel the same way on every issue and that is ok. We are passionate about our kids and prematurity. That passion fuels our emotions. I've learned that I had a lot to learn. I encourage all to read the blogs that are listed on my side bar. Each and every one of them has brought something into my life and allowed me to continue on my journey, in an enlightened manner.

This blog would nothing with out all of the people who have commented here over the past year. As much as I would love to thank everyone by name, I am sure I would accidentally leave someone out. Whether you have left your mark here once, or hundreds of times, please know that I appreciate all of you!

I have received many sweet emails from parents who were thankful to have found this blog. I have shed tears reading your letters and hearing how you thought you were alone and how you have been helped by all of us here.

Then there are the letters from adult preemies who are now able to understand why they feel the way they do... I am so very glad you found your way here! And, you all have helped me to better understand Paige. I have made changes to the way I parent her after hearing your stories. Your voices and experiences are incredibly needed. I am honored to know all of you.

Finally, my hope for this blog is that it can be used as a tool.

If you are a parent of an older preemie who has not caught up to their peers, you will find that you are not alone.

If you are an adult preemie, I hope you that you will find some answers here.

If you are a member of the media, please notice that prematurity does not end at the NICU doors.

And, if you are a neonatologist, please spend some time reading about the long term issues that our kiddos deal with on a daily basis. Please use this information to help future preemies. Please don't just focus on getting them healthy enough to go home. They have their whole life ahead of them and deserve improved care based on outcomes of preemies past.

28 comments:

Sarah said...

A very big congratulations on your 1-year anniversary! I find it fascinating that I found you for the very first time one year ago tomorrow - my birthday.

Thank you for all of your information and your passion towards prematurity. I don't always agree with the opinions with everyone here, but I've always said you can't like all things at all times. And it's nice to know that I have a wealth of information on what to look forward to in the coming years.

As far as babies coming home on oxygen - I can't answer for anyone else, but from our experience Emery likely wouldn't have survived 10 years ago because no one would have resuscitated him. Only a handful of facilities would have even attempted now (he never took a breath at birth, and upon intubation his lungs were extremely stiff). Also, I don't know about other facilities, but at the U of I they send nearly all of their babies home on oxygen for growth. Their theory (or their experiment, if you will) is that babies who don't work to breathe grow better, and we certainly have living proof of that! They look like they have a high incidence of BPD, but their growth rate of their preemies is much better than the national average.

Personally, I'd settle right now for some in-depth research on why these kids can't stand to eat and throw up every day lol!

Congrats, and keep blogging!

The Preemie Experiment said...

Thank you Sarah!

As far as the vomiting and not eating... It's worth getting in to an ENT and asking him/her about the size of tonsils and adenoids compared to head size. Paige's tonsils were not enlarged but instead it was her small head/neck size that mattered. She was choking on her tonsils. Sleep apnea/hypopnea was an issue too. She had hers out when she was 6 and it made a world of difference. It seems that ENT's are now doing the T&A surgery on preemies more and more. I'm not saying that it's the right decision for everyone, it's just that I hear about it being done so often now and it sure worked for Paige.

Sarah said...

I'll have ask about that at our next visit. Sometimes we are seriously out of our heads with the vomit. My husband and I will be having a great day with him and then the vomit fest starts and drops our spirits into our shoes. I'm sure a lot of preemie parents can understand that feeling, whether or not it's related to vomiting.

Anonymous said...

I have never been known to be a woman of few words . . . but today I would say you have mastered the art of CONSCIOUSNESS RAISING. KUDOS!!!

Now, if we could only raise the consciousness of the press, the docs who disregard the long-term consequences, the educators who never heard of preemie syndrome . . .

Chris and Vic

Anonymous said...

PE says:

Honestly... can someone fill me in as to how parents and doctors are making informed decisions if the long term (beyond age 2/3) outcomes are not studied.

??? Yes !!! I wonder if docs ever see themselves on the recieving end of info necessary in order for THEM to make informed decisions???

Do they see themselves exercising the rigor and discipline in preparing themselves to make informed choices for their patients and families? That is, gathering the hard facts from the front lines?

Chris and Vic

rlbates said...

Congrats on your one year blog anniversary!

Carrie said...

I feel very lucky to have found your blog. Thank you for this blog and happy anniversary! I actually feel like I have been reading this blog forever, so I was surprised that it has only been a year:)
Carrie

no one said...

You say, I was, and still am, so very shocked that the preemies of today seem more affected by their prematurity, while they are still small. A diagnosis of cerebral palsy seems to come much sooner than it did 9 years ago (Paige's generation). I'm amazed at how many kiddos have brain bleeds now, compared to 9 years ago. Kids coming home on oxygen seems to be more common too. Why is this? Why aren't preemies coming out of the NICU in better shape than they did 9 years ago?

Do you have data regarding this? Separated by gestational age at time of birth? Or is this anecdotal?

Rebecca said...

Can you talk about cancers in former preemies? I've never heard this before.

Helen Harrison said...

Certainly, the recent accounts that I am reading on preemie-list are frightening -- and I have been reading that list for well over 10 years now.

The severity and complexity of the poor outcomes have increased over the past decade *on the lists,* but this may be due to a greater willingness of parents to talk about about poor outcomes. In the early days, eveyone seemed to think their child was the only one to have problems, and they were often hesitant to talk about it in public. That has changed.

Or perhaps there is simply a larger population of families speaking out and seeking support via the Internet -- certainly the list seems to have grown enormously.

I have been reading official med journal follow-up data for over 30 years now. Poor ELBW outcomes and/or <26 week gestation outcomes (as diagnosable at age 2)escalated sharply in the mid-1990s along with the escalation in the use of steroids and surfactant; it may not have been the drugs per se so much as the eagerness of neonatologists to try to resuscitate at ever-lower gestations, based on optimism that these drugs engendered. The evidence on what caused the upsurge in handicap is not that clear,yet,IMO.

There *may* have been a lessening in severe CP with the very recent decrease in the use of postnatal steroids, in some centers. However, BPD rates remain steady and so do retardation rates (and retardation is the most widespread single serious outcome of prematurity) and BPD is a major risk factor for poor outcome. Meanwhile, ROP rates may be going up, as noted in a previous thread. but deafness may be on the decline.

Psychiatric problems such as autism and schizophrenia are becoming more freqently diagnosed in preemies. Whether that means they are on the rise, or that they are simply being noticed and mentioned more now is hard to tell.

Cancer rates are, I have heard, higher in preemies and we've seen a fair number of cases of infant cancer, particularly liver cancer, on preemie-list.

I think I have some data on cancer and preemies that I will try to locate and put up here.

The Preemie Experiment said...

Rebecca wrote: "Can you talk about cancers in former preemies? I've never heard this before."

Hi Rebecca,

Below are only a few of the resources that I was able to find by simply searching google using "hepatoblastoma prematurity" as the search terms.

http://www3.interscience.wiley.com/cgi-bin/abstract/98516478/ABSTRACT?CRETRY=1&SRETRY=0

http://www.ncbi.nlm.nih.gov/pubmed/9108853?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVAbstractPlus

http://www.emedicine.com/ped/topic982.htm

There are so many more links I could post but I really am short on time tonight. It's easy to find by searching. And, there were quite a few articles that I don't have access to since I am not in the medical profession. You may have better luck at a medical library.

On a personal note, I have been on various lists for 9 years. I can barely type this without tearing up thinking of the preemies who have passed from hepatoblastoma. I have heard speculation that it is more common in preemies who have been on prolonged TPN but like I said, it is only speculation.

Whether the correlation between liver cancer and prematurity is rare or not, it's real. Real kiddos have died.

The Preemie Experiment said...

"no one" wrote: "Do you have data regarding this? Separated by gestational age at time of birth? Or is this anecdotal?"

Nope, no data. Why? No long term, LARGE scale, studies! Why? Because no one is following our little ones!

Yes, my statements were purely based on 9 years of listening to parents. Like Helen said, it could be due to more parents speaking out or seeking comfort through on line groups. My point is that serious issues do not seem to be diminishing.

Tammy said...

You said, Kids coming home on oxygen seems to be more common too. Why is this? Why aren't preemies coming out of the NICU in better shape than they did 9 years ago? Hasn't technology improved?

I can’t speak for anyone else but I know my son came home on oxygen in 2002 because of a study that was released a month after his birth regarding the use of postnatal steroids. I showed it to his neo doctor, who agreed, that the study was compelling enough to avoid using any more steroids. I believe the study pointed out that postnatal steroids (in particular –Dexamethasone) did decrease oxygen dependence and incidences of CLD (chronic lung disease) but had increased risk of short and long term complications, including impaired growth and neurodevelopmental delay. The name of the study was Postnatal Corticosteroids to Treat or Prevent Chronic Lung Disease in Preterm Infants, and was printed in the American Academy of Pediatrics in February 2002.
Also, I want to send a BIG THANK YOU your way for starting your blog. It has been a lifesaver. Thank you,
Tammy

Helen Harrison said...

To Stacy,

The people who are keeping track of our children(sort of)are in the school systems -- and they report a quadrupling in handicapped and medically fragile children in the past 20 years.

Anonymous said...

I can't speak for liver cancer, but our teenage preemie has been diagnosed with gallstones, and when I asked why preemies seem to be susceptible to gall bladder disease, the physician said that it could be due to TPN and severe illness as infants and children. Apparently, the gall bladder functions by regularly squeezing bile. If the infant or child cannot eat normally, then the gall bladder tends to "freeze up" and form stones. So I just wonder if lack of proper nutrition and feeding might also affect the function of the liver.

Anonymous said...

Helen, the number of medically fragile children in my child's special ed class pretty much quadrupled this past year! Half the class is fed by g-tube, and they had to hire a nurse to do g-tube feedings all day.

Helen Harrison said...

To anon 10:59,

I'd love to know:

What is the approximate age range of your child's classmates?

What state do you live in?

Do you know if this situation is typcial in other special ed classes in your area?

Helen Harrison said...

To anon 10:57,

About 20 years ago, a friend of mine was sent to psychotherapy because of her infant preemie son's eating disorders -- which the docs felt was due to her failure to bond with him. The child's feeding problems were finally solved after gall bladder disease was diagnosed and his gall bladder was removed.

I've heard this story *so* many times since, and I hope anyone out there whose baby or child resists eating will mention the possibility of gall bladder problems to the docs.

NICU101 said...

First off congrats! I first found you while I was in the midst of a post preemie pregnancy. I love the insight you've brought to the topic of premature birth. So many people who are in our lives want me to gloss over our daughter's problems and say she's ok, because she "looks so healthy." I won't do it anymore.
-Kristie

Kathy said...

Happy blogoversary!

Helen Harrison said...

To NICU 101:

Just went to your blog and followed the link to the article in AJOG on infection and preterm birth --especially very early preterm birth. Thank you for the refernce!

I went to check it out and found it was a free download. I would recommend it to *anyone* who has had a preterm baby (for reasons other than preeclampsia) and is contemplating a future pregnancy.

Aidan's mom said...

Happy blogoversary Stacy! Thanks for being around and educating!

terri w/2 said...

Re: Gallstones and prematurity. .my 21 year old was in the ER on Tuesday this week and dx with a rather large gallstone. We have an appt with a surgeon on Monday. Interesting that this popped up today! I will be certain to pass this info on to the surgeon.

Helen - my best friend was also sent for psychotherapy because of her daughter's feeding issues. The hospital videotaped her attempting to nipple feed her daughter and then told her to go home for a few days while they took over. They had no more success than mom did, however, they still blamed mom for the baby's feeding issues.

She was later dx with cerebral palsy, had a fundoplication done (twice) due to severe reflux and a g-tube placed at age 2.

I hope that medical care in this area involving preemies has since changed, as this caused this very devoted mom a mountain of anguish.

Anonymous said...

Stacy-
This blog is such a great public service! It provides vital and too rarely mentioned info. Hope you are around and blogging for many years to come!

Anonymous said...

Congratulations!

Joan said...

Helen Harrison said...

About 20 years ago, a friend of mine was sent to psychotherapy because of her infant preemie son's eating disorders -- which the docs felt was due to her failure to bond with him. The child's feeding problems were finally solved after gall bladder disease was diagnosed and his gall bladder was removed.

I've been thinking about this story since reading it last week. It's one more example of what preemie parents go through over and over and over - dealing with so many issues that don't have appropriate identification or treatment - in the context of the health care system - and enduring treatments or attitudes that inadvertently become abusive, although the abuse is stemming from blatant ignorance rather than intentional cruelty.

Lack of real help is SO prevalent for the many issues our preemies face.

Joan

The Preemie Experiment said...

You are so correct Joan! Over the years hubby and I have been told that various issues that Paige dealt with were our fault or even imagination. But, in the end, the docs were proven wrong.

Anonymous said...

There is this doc on public radio--Zorba Paster (The Longevity Code), who always says, "You've GOT to get a diagnosis". I don't agree with everything Zorba says, but I think he is dead-on with insisting that people who call in have got to go back to their docs and get a diagnosis.

In the case of our ex-preemies, if there is no diagnosis, what Joan says happens will happen again and again. Blaming parents. Yes, it is an abusive practice--and I would not let any doc off as easily as Joan lets them off. I think it is abusive, and ignorance does not absolve . . .

Instead, if a diagnosis is doubtful or long-in-coming, those docs should document, document, document what has been ruled out; what parents suspect; what docs suspect but cannot prove with conventional testing. Docs should go on to write, to document, that they do not blame parents, that they believe that the parents have some insight into the problem, etc.

The docs should write a tentative diagnosis. They should write into the record the lab error rate for the tests that have been done. They should write that they have referred the child on for a 2nd or 3rd opinion to such-and-such specialist. They should write in the record (a commitment) that they will follow up in 6 months or a year, repeating the tests, or giving the child a trial on a med, or giving the child more time to mature or show additional symptoms, or whatever.

Often enough, the parents are sent home with their child having symptoms, even worsening symptoms, and the parents have to figure out a way to deal with it on a day-to-day basis. And the docs get to blame them for their creative solutions, or for whining about the problems, or for their angry or depressed reactions to the lack of a solution.

Come on!!! Play fair!!! Follow up.
Keep sleuthing till you find a diagnosis. Repeat the tests. Refer to a specialist. Do whatever needs to be done. Don't dump on parents and then blame them for the difficulties they have in coping.

Chris and Vic