Thoughts From A Pregnant Preemie

Just to provide a little background, I am 26 years old, and I was born at 29 weeks gestation weighing 3lb 13oz. I was in the NICU for nearly 100 days before being brought home. My mother also had a second daughter two years after me, who was born too early to survive.

From the day I found out I was pregnant, I felt my joy and excitement tempered by worry. My mother had preeclampsia and recent studies have suggested a hereditary component which might put me at a higher risk of delivering my child prematurely.

I feel like most people don’t understand the challenges that I have faced as a preemie, since it has left no visible scars on me. As a result, no one seems to understand why I am terrified that my son will make an early entrance “because look at you, you’re just fine.” Either they don’t understand what kind of issues preemies can suffer from and think they’ll be just like a full term baby only smaller, or they think I’m being paranoid and shouldn’t be borrowing trouble.

I’ve never found that hiding my head in the sand solved any problems, and I want to be as prepared as possible in case my son does need to make an appearance early. It’s true that there have been tremendous strides in the care of premature babies since I was born, but the media tends to gloss over the real facts like survival rates and disabilities, while focusing on the ever-smaller miracle babies who pull through. I wanted to make sure I understood all the hard facts so that if there were any decisions to be made, they wouldn’t be based on emotion or popular misconception.

It really frustrates me though when people simply don’t understand the reality of having (or being) a preemie. They see the success stories, or are assured by doctors that preemies catch up by age two. No one seems to pay any attention to the ones that don’t. It makes me so angry when I see women in their third trimesters (or even second trimesters!) talking about how they can’t wait for the baby to be out because they are so uncomfortable, or begging their doctors for an early induction. At least in my mind, my baby’s health is far more important than any amount of pregnancy discomfort that I will suffer; I will gladly endure whatever’s necessary to keep my son inside me until it is safe for him to come out. Will it be difficult? I am sure it will be. Pregnancy is no picnic for most women, but who ever said that being a parent was easy? It’s all about making the best decisions you can for your child, and that means putting his/her health ahead of your comfort.

On a pregnancy message board I frequent, they have a tradition of celebrating “V-day” when they reach 24 weeks, or viability day. It makes me so frustrated to read those posts because most of the women seem to feel that once they’ve reached that point, they are safe. Their children will be fine, just a little small. I wish there was some way to show them the reality of a 24 week preemie, the heartache of the NICU roller coaster, and the possibility that their child still may not survive or be severely disabled. It boggles my mind that people can truly believe that a fetus just barely halfway through a normal pregnancy would be just fine if born.

Am I being negative? I think that I’m being a realist. Some children who are born as early as 24 weeks may suffer very few visible effects of prematurity, or they may not appear until adulthood. I can testify to that. But the majority of babies born this early in pregnancy will have lasting issues and many will die; I don’t see that as a milestone worth celebrating.

I’m currently in my 26^th week of pregnancy, and aside from having a few scary moments in the first trimester when we thought we were losing the baby, I’ve had a fairly normal pregnancy so far. Due to my family history, I’m being carefully monitored for any warning signs. Every time I feel my son kick or move inside me, it’s the most wonderful feeling in the world. I would do anything to keep this little one safe and healthy, and in the womb until he is fully developed and ready to be born.

I just wish there was some way to help more people understand what a serious issue prematurity is. Kudos to Stacy for helping to show people that there is another side to prematurity other than the warm fuzzy one that the media chooses to publicize.

When I was a little girl, my mother always told me not to wish my life away when I said I wanted to grow up faster or be older. Now that I am pregnant with my son, that comment rings even truer for me.

Susan

**Note from Stacy... Ok, before you click on "publish your comment" please keep in mind that the person who was brave enough to share her thoughts with all of you is PREGNANT, in a high risk pregnancy no less. Do NOT sling drama her way. If there is a topic within her post that you would like to discuss further, please post your request in the comments or email me and I will gladly make an entire post out of the topic.**

Thank You

Over the past few days I've typed and re-typed this blog post many times. I can't seem to find the right words to say what's on my mind and in my heart.

I have appreciated all of the emails that I've received. See, even that isn't sounding right. Appreciated? Does the meaning of that word really convey what I'm feeling? Is the word strong enough? I hope so.

I had always hoped that this blog would help someone that needed to not feel alone; someone who may be wondering why their child had not caught up and they were beyond the magic age of 2 or 3 or maybe someone who was dealing with raw emotions that were scary. But, the blog went way beyond my expectations which became evident by the number of emails I have received since going on hiatus.

Thank you.

Simple words-are they strong enough? There I go again. I'm not going to try to find any other words or else this post will never reach the blogosphere.

Thank you to everyone who has written to me. Please don't take my lack of response as a lack of appreciation. Please. I've run through a gamut of emotions and needed to let it all soak in. I am so thankful that the blog has helped so many and I still read those wonderful emails when I need to be reminded that there are good people out there.

What I was not prepared for when I started this blog was the anger and negativity that would be directed toward me and those who comment here. My skin has thickened over the past 2 1/2 years of blogging with each and every insult and rude comment that was thrown at me. But, that thickness becomes paper thin, still to this day, when the attacks are directed at others. It was easy to walk away from blogging to avoid that gut wrenching emotion that takes over my entire being when people start being nasty to each other.

Easy to walk away... yes. Easy to stay away... no.

I will be posting an entry from a guest blogger in the next few days. It was her story that brought me back to blogging. I am asking everyone to keep an open mind. Not many of my readers can say they have ever been in her shoes-not completely. You'll see why. Her words are important. Every parent of a preemie, especially preemie girls, should read her words carefully. Every pregnant woman should take note. Above all else, I am asking that everyone be kind to her. There will be topics in her post that warrant further discussion which I will gladly make a separate post so the drama will stay separate. I will not allow drama to be thrown her way!

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?

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