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?

Ok.

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.

Ok.

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!

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... http://kayleighannefreeman.blogspot.com/

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.

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.

Adult Preemies Needed for Research

I received an email from an adult former preemie asking if I wouldn't mind posting a request on my blog. Not only do I not mind, I am grateful to see research being done into BPD and honored to help in any way that I can.

Let's help him out... pass along the info to any adult preemies you may know. Please note... they are looking for former preemies even if they do not have BPD.

****

Hi Stacy,

My name is Steve Laurie and I got your name and contact info from Helen Harrison and wanted to email you and introduce myself. My twin brother (Tim) and I were born at 25 weeks back in 1980 and have miraculously survived with few complications due to the prematurity. I am now a graduate student at the University of Oregon studying lung function and one of the aims of our lab is to look at adult survivors of bronchopulmonary dysplasia. This follow-up work has not been studied and we are interested in the lung function of these individuals.

We are currently recruiting subjects to participate in our study (see attached flier) and would like to see if is possible to post our flier on your site. I am also trying to send an email out through the former preemie yahoogroup.

Please let me know if this is something we could do or if you have any questions regarding what we are doing, how we are doing it, what we hope to accomplish or even just questions about my story as a preemie.

Please do not hesitate to contact me via either email or phone, I look forward to hearing from you.

Thanks so much,
Steve


--
Steve Laurie
Department of Human Physiology
University of Oregon
Eugene, OR 97403
slaurie@uoregon.edu
541-346-0822 (lab)

******

I then asked Steve to comment on his outcome with regards to his own prematurity. Here is his reply...

****

Hi Stacy,

Thanks for the reply! Our lab has a number of things we work on surrounding lung function, some dealing with preemies, other aspects that do not. Currently there are three grad students in my lab and while we each have a project that is "ours" that we each head up, we all work together on all of the projects. Technically speaking, the preemie project is not mine, although all that really means is that when it comes to the contact person it is Ximeng (pronounced Simon), who sits right next to me in our office :) That being said, I obviously have a keen interest in the success of the project and so am doing whatever I can to get it up and running. Once the actual data collection begins, we all contribute to all the projects because they are such an undertaking.

Additionally, we are working on putting together a study to look at lung function of preemies that are still kids (5-15 years old) and see if putting them onto an exercise program can help their lung function before going through maturity. This project is still waiting for approval from our human subjects committee, but as that develops, I will let you know.

I'm not sure how much information is given out to parents regarding lung function of their preemies, but I can give you a brief idea of what we are interested in. Basically, with the advent of surfactant in the early 1980s (my brother and I were some of the first to get it) it has dramatically helped the long term lung function of these kids. However, as the lung is not completely developed when these kids are born, it finishes it's development while these kids are on oxygen and it is the high oxygen levels that actually stunt the lung's growth and consequently limit their overall lung function later in life.

My brother Tim and I were born in 1980 at Children's Hospital in San Francisco (see The Premature Baby book by Helen Harrison, we're in there) - I was 2 lbs even, Tim was 1 lb 16 oz. I remember growing up and going back for follow-up appointments until we were in our early teens and remarkably, we have nothing wrong with us. I think a lot of it is luck for being born at the hospital we were at; I know our parents said they were signing experimental treatment forms on a weekly basis! Actually, the only thing we do exhibit that is abnormal is that our lung function is slightly compromised due to the high levels of oxygen we were on while in the NICU for 3 months after being born.

I graduated from UC Davis in 2004 with a degree in exercise physiology, my brother from Loyala Marymount University with a degree in television production. I am actually a long distance runner and was a 2x All-American while in college, but have since moved up to the marathon where I just missed qualifying for the US Olympic Trials in 2008. I hope that parents of new preemies can see how lucky my brother and I have been and maintain hope that their preemies, despite the odds against them, can turn out healthy and have extraordinary lives too.

****
Here is the flyer that was attached...

Classroom and On-line flyer

Subject Recruitment

Paid Pre-term Research Subjects Needed.

Study population:

Healthy, non-smoking males and females age 18-49 yrs. Subjects born preterm (<32 weeks gestational age) with or without Bronchopulmonary Dysplasia, males and females age 18-49 yrs.

Study description:

This study is designed to examine long-term heart, lung and breathing outcomes resulting from preterm birth. It will be conducted over the course of 4 visits. First visit will involve resting saline contrast echocardiography to examine your heart, an array of lung function tests, and a VO _2max test. Second visit (for study population only) will test your lung function before and after administration of a fast acting bronchodilator. Third visit will involve total lung volume measurements, breathing gas mixtures with varying concentrations of oxygen and carbon dioxide, and a lung diffusion capacity test. The final visit will involve two exercise tests breathing different levels of oxygen, arterial blood samples and saline contrast echocardiography will be performed to examine heart and lung function.

Relevance to subjects born premature:

It is our hope that this study will provide a fundamental understanding of the long-term heart and lung outcomes of premature birth.

Study Location:

The study will be conducted in the University of Oregon, Department of Human Physiology, Cardiopulmonary and Respiratory Lab, located on the 2nd floor of the Center for Medical Education and Research Building (722 E. 11th st.) on the Sacred Heart Medical Center campus.

Subjects will be compensated for participation in this study.

If interested, please contact

Ximeng Yang B.S.

xyang1@uoregon.edu (541) 346-0822

Andrew Lovering Ph.D

lovering@uoregon.edu (541) 346-0831

Department of Human Physiology

1240 University of Oregon 122 Esslinger Eugene OR 97403

Paige Wonders....

Paige: "Mom, I've been thinking about what kind of doctor I want to be. What kind of doctor deals with the most blood, guts and bodily fluids?"

Me: "A nurse"

Sending love to all my nurse readers out there! lol

A few minutes later Paige comes out and tells me she wants to be a surgeon. This isn't the first time we've heard her say this. We always try to balance our answer with reality (she has very mild CP and shaky hands) while not squashing her drive.

"Well, maybe I'll stick with my original idea and create a preemie doctor field."

You do that sweetie!!

ABDUCTED CHILDREN

****Update March 30, 2009**** First I want to thank everyone who took a moment to look at the pictures of Jack and Duncan. The boys were found but sadly they were not found alive. There are no more details at this time.***


While the majority of the posts on my blog are dedicated to prematurity (with the occasional teasing of my husband), this blog post will be dedicated to 2 children who are missing.

Their family needs your help.

Please take a moment to look at the information and study the pictures. Please do NOT assume that you won't be able to help because of the location of the abduction. Many abducted children are taken far away from the point where they were taken. Also, just because these boys were taken by their father, please do NOT assume it is not as serious as a stranger abduction.

If you would like to help, you can print posters from the following link:
National Center for Exploited and Missing Children

For more information you can visit:
http://www.myspace.com/helpfindduncanandjack

If you are on Facebook you can join the group

"the official bringing jack and duncan connolly home safe group"

If you have any information, no matter how small, please contact

The National Center for Missing and Exploited Children at
1-800-843-5678 (1-800-THE-LOST)

Family Abduction

DUNCAN CONNOLLY DOB: Oct 17, 1999 Missing: Mar 8, 2009 Age Now: 9 Sex: Male Race: Asian Hair: Brown Eyes: Brown Height: 3'6" (107 cm) Weight: 66 lbs (30 kg) Missing From: BLOOMINGTON IL United States

JACK CONNOLLY DOB: Apr 10, 2001 Missing: Mar 8, 2009 Age Now: 7 Sex: Male Race: Asian Hair: Brown Eyes: Brown Height: 3'4" (102 cm) Weight: 62 lbs (28 kg) Missing From: BLOOMINGTON IL United States

MICHAEL CONNOLLY Abductor DOB: May 20, 1968 Sex: Male Race: Asian Hair: Black Eyes: Brown Height: 5'8" (173 cm) Weight: 175 lbs (79 kg)

Duncan and Jack were allegedly abducted by their father, Michael Connolly on March 8, 2009. A felony warrant for Kidnapping was issued for Michael on March 9, 2009. They may still be in the local area or they may travel to Hoffman Estates, Illinois in a grey Dodge Dynasty with license plates A326109. The photos shown above are a representation of what the vehicle may look like. Michael may go by the alias name Gung Yer Lee.

ANYONE HAVING INFORMATION SHOULD CONTACT National Center for Missing & Exploited Children 1-800-843-5678 (1-800-THE-LOST) LeRoy Police Department (Illinois) 1-309-888-5030

Paige's Knowledge of Her Own Medical History

Over the past 2 years we've covered the topic of "how much should you tell your preemie about their medical history" a few times. I believe it's a personal decision but with Paige we have made her a part of her own care since day one. She has heard her medical history countless times and can pretty much repeat it on her own. She knows her current meds including dosage. We never drilled this information into her head. She has just heard it so many times that it is 2nd nature.

If you would like to read the previous blog posts/comments on this topic, you can do so here and here.

Recently we changed doctors from a family practice doc to a pediatrician. I filled out all of the paperwork ahead of time (it's not a simple task when you have a preemie) and was less than thrilled when the doctor proceeded to ask all of the same questions that I had answered on the extensive paperwork. I was answering them as cheerful as possible, as to not start off on a bad note with the new doc, when Paige spoke up...

"Wait Dr. XYZ, I do have an allergy to medicine. Mom, why did you tell her that I'm not allergic to anything?"

I tried to hush Paige with the usual finger to the mouth but it didn't work.

"Mom, duuuuuh! I can't believe you missed something! hehe" (she always thinks it's funny when she realizes that I have made a mistake-loves to rub it in my face too-lol)

I shot her the glaring eyed mom look and then put my finger up to my mouth to hush her again. I figured she was talking about a reaction she had to a seizure medicine where she lost the ability to walk and see colors-after only one dose. "Paige, your reaction to the carbamazepine was due to an overdose on the doctors part. It was not an allergic reaction."

I looked up at the doctor, still trying to smile through the questions that I've already answered.

"Mom, I'm seriously allergic to Omnicef! DUH! Remember my full body hives? Remember those steroid shots I needed? Remember the doctor telling you to make sure I never have any 'cillins'? Remember Mom? " She then breaks out into hysterical laughter, turns to the doctor and says, "Maybe you better ask me the questions from now on."

At that moment I was reminded of why we have always included her in her care. I was proud of her (even her snarky attitude-lol). I watched, in awe, while she answered the rest of the questions on her own (completely accurately I might add). She is such an amazing child!

I beat myself up over the fact that I forgot such an important bit of information. My facial expressions must have made it obvious too because the doctor leaned over, patted my shoulder, and said, "It's ok. You taught her well."

Ok, yes I learned a lesson. Asking those questions, despite the fact that I had answered them already on the intake form, was a good thing. I will never complain about that again!