The Playpen

As many of you know, my wife and I started The Playpen as a resource for parents, new and old–particularly those of preemies.

Now, we are asking for your help

But first, I thought I’d give you some quick and interesting preemie statistics and hopefully provide some thought-provoking insight into the “world” of premature babies.

1. Babies are considered premature when born at 37 weeks or earlier


2. In the U.S., prematurity is the leading cause of neonatal mortality at 25%


3. Nearly half of all premature births have no known cause


4. The rate of preterm births in the U.S. has increased by 30% in the last 20 years


5. The average cost for caring for a premature infant in its first year is $77,000


6. The average cost of care for a full-term baby is $1,700


7. Number of preterm births in the U.S. per year: 500,000


8. Being poor, African-American, under 17 or over 30 can increase your risk of having a preterm delivery by more than 50%


9. African-American baby girls born weighing 2.2 pounds or less are more than twice as likely to survive as white baby boys born at the same weight


10. 1 out of every 10 babies born in the U.S. is premature.

Having gone through this experience ourselves, we know how incredibly stressful and emotionally testing it can be. When Frankie was in the NICU, one of the things we used to enjoy the most was looking at all of the photographs of babies who had been through the unit before us, leading happy lives as older children.

With this in mind, we’d like to ask for your help. We are starting a new preemie segment on The Playpen entitled “The Preemie Adventure – Then and Now.” The series will feature a picture of premature infants at birth, along with a photo of the child at present day, along with a brief story from the parents describing their personal experiences with preterm birth.

If you would like to participate in “The Preemie Adventure”, please comment here or drop either of us an email: matt[at]redsparks.com or aline[at]redsparks.com.

There isn’t that much required, just a paragraph or two and some photos (which we KNOW you have thousands of). Please help us get this off the ground, and thanks in advance.

Matt and Aline
Please stop by and check out our adorable line of clothing for preemies at our online boutique!

Thats how we read the general question being asked by this article posted on BusinessWeek. This question is being asked more and more frequently, and has become a hot topic, for obvious reasons. It doesn’t get the press that issues like abortion or gay marriage receive, simply because the overall population of parents who have premature babies is still relatively small in comparison to those with full-term children. However it is an extreme hot button for those parents who have gone through the experience of having a child in the NICU.

The core of the debate emanates from reports such as these:

Excerpt

“extending intensive care to the most immature infants would entail considerable suffering, resource use, and cost in order to benefit only a small proportion of infants.” Elderly patients who are subjected to painful, drawn-out hospital procedures can urge doctors not to take further drastic measures; preemies who suffer through heroic interventions have no such voice.

The issue is more complicated than simply taking a side. As in many great political debates the real issue stems from one side being overly analytical and mechanical, while the opposition behaves emotionally and oftentimes irrationally. Lina Moreco, the Montreal filmmaker who created Medicine Under the Influence, a 76-minute documentary on this very topic, is an example of the former.

“Many of those children would not have survived 30 or even 20 years ago. Now they do, with often terrible consequences,” Moreco states. “It doesn’t make sense that we, as a society, spend $250,000 to save a baby born after only 22 weeks, but spend next to nothing to provide the treatment and therapies they need to live with their handicaps. It’s scandalous.” Note that this film was release in 2004, the cost of NICU care of a 22 weeker can now often exceed $1 million.

Whether you have a preemie or not, it is easy to see why this type of cold, fact-based logic ignites such passion among parents of pre-term children. As anyone who has watched the amazingly heart-wrenching and touching film, “Little Man” can attest, there are times when even the most dedicated parent of preemies, particularly ones unfortunate enough to possess serious birth defects and lifelong health issues, can waiver and question their own decision to put their families, relationships, health and financial security behind the life of a child who’s very survival is uncertain.

For us, it was practically a non-issue. We have been blessed with a preemie who, at three-years-old, has no evidence of the health-related issues she once faced. Although her period in the Neonatal Intensive Care Unit was extremely difficult for us, there was never any shred of doubt in our minds about whether or not we wanted her to survive.

For others, however, it is not so simple. In fact, the great preemie debate is really a continuation of the abortion issue. Only the individuals personally involved in the situation truly understand the implications of their decision. Is it right to deny resuscitation to a child based on the possibility that its life may be complicated, expensive, cruel and laden with hardship?

In our opinion, the parents, and only the parents, can make that decision.

Matt and Aline
Visit our online boutique for the latest in fashion and fun for preemie through toddler

When Frankie was born three years ago, among other problems she was diagnosed with a defect called ASD, or Atrial Septal Defect. Septal defects are sometimes called a “hole” in the heart. When there is a large defect between the atria, a large amount of oxygen-rich (red) blood leaks from the heart’s left side back to the right side. Then this blood is pumped back to the lungs, despite already having been refreshed with oxygen. This is inefficient, because already-oxygenated blood displaces blood that needs oxygen.

What did this all mean to Frankie? It meant that later in life she “may not be able to keep up with other kids”, as her cardiologist put it.


Symptoms of ASD include:

Severe complications include:

Many people live with ASD in some way every day and never even know. The symptoms and risk of this defect are determined by the size of the “hole”. In Frankie’s case, it was 6mm, which is very large. For females, 1mm or smaller is desirable (smaller than boys due to the strain placed on the heart during childbirth later in life.) It should be noted that this hole is present in all unborn fetuses to allow blood to bypass the lungs, and typically closes at birth. Because the hole may not have closed completely at time of birth, this defect is present in many pre-term babies like Frankie.

An atrial septal defect used to require open-heart surgery. Now, a relatively new procedure has been developed to close the defect without surgery. The procedure involves the introduction of an ASD closure device (such as the Amplatzer device) into the heart through catheters. A tiny incision is made in the groin to introduce the catheters. They are then advanced into the heart, where the closure devise is placed across the ASD and the defect is closed.

This, to us, was still very frightening, as anything foreign introduced into our daughter’s heart could cause complications. So we watched it very carefully, going to the cardiologist every six months for EKG’s and Echocardiograms. Around two years of age, we were fairly convinced that Frankie would have to have the procedure…it simply wasn’t closing.

Then, something amazing happened. On our second to last visit, her doctor told us that he couldn’t see it. He said it may have closed, or may simply have been a bad echo…they are not completely accurate, particularly when the patient moves a lot. So we scheduled another one 4 months later.

Frankie’s last appointment just happened and, to our disbelief and joy, the hole had completely closed! The cardiologist actually told us that he didn’t expect it to; it is fairly rare for them to close at this late of an age. We were absolutely overjoyed and thankful. Once again, our stubborn little bull-headed demon had willed herself to heal against the odds. Frankie, we are so proud of you. When you read this you probably won’t even have a memory of this entire drama in all of our lives, but know that you are an inspiration to us and hopefully to others who have children with the same condition. And thank you from the bottom of our hearts to all of you who supported her and prayed for her…we are truly blessed. Time to celebrate!

Matt & Aline
Visit our online boutique for the latest in fashion and fun for preemie through toddler

My wife went to the doctor yesterday for some routine tests and checkups. What should have been a pleasant, positive experience turned into a nightmare. First, he misdiagnosed something that scared her quite a great deal. Second, he was rude…SO rude and inconsiderate to her that I will be filing a formal complaint with the hospital.


When she called me in tears, I promptly left the office and drove to the hospital, where I found her upset and red-eyed on a bench outside. After she explained to me in detail about how tactless he had been, and about what he had told her, we agreed that he had indeed left some important information out, and that we needed to go back in to get the rest of the information.


I admit I was shocked at what a *censored* this guy was when we entered his office. Even with me there attempting to ask questions he would interrupt, and condescendingly dismissed our questions. But we persisted, despite his attempts to shuffle us out of his office. Finally, when we started to question some of the language on the report my wife had been given, his attitude changed slightly. He finally looked at us instead of his computer screen and told us to sit down. Although his personality remained abrasive, he spent quite a bit of time with us, and answered all our questions, after which Aline felt much better.


Which brought me to an interesting revelation and the query in the title of this post. I realized that my wife and I were not behaving in the way that average patients behave, we were behaving like preemie parents. We were stubborn, insistant and thirsty for knowledge. As I am sure any parent that has spent a fair amount of time in the circus known as the NICU can attest, you quickly become an expert on medical procedures, equipment, risks, stats, readouts, beeps, bells and more. Your fear and love for your child forces you to become involved; to seek out the answers and explanations that will, at the very least, provide you with the tools necessary to insert yourself into the process and make educated decisions about the future of your child. Before you know it you are discussing de-sats and nasal cannulas, atrial septal defects and bradys. You are questioning the doctors and interns, arguing with the nurses and pointing things out you wish them to pay more attention to. It changes you, whether you realize it has or not. From that point on, you are no longer happy with “I wouldn’t worry about it”, or “You’ll be fine”, from doctors. You want details. You want to make sure the information is accurate, and you absolutely want to be positive they have paid attention to the details and delivered an accurate prognosis.


Let me say, on record, that I owe absolutely everything to those who helped my daughter through her stint in the NICU. Those people, and all of the people elsewhere in their profession, can never be repaid. My point is simply that, surviving the NICU has made me realize that doctors are human. With no disrespect to their intelligence, intentions or experience, some of them lose their way. Some of them make mistakes. Some of them, like my wife’s new best friend mentioned above, simply have the personality of a tree stump. So, while I owe an un-payable debt of gratitude to all of you for what you have done for my family and what you will continue to do for others, know this – I will continue to question everything you tell me until I am sure it is correct and the best possible guidance you could give me. And if my refusal to leave your office until you have answered all my questions irritates, annoys, frustrates or upsets you in any way, deal with it. You are the doctor, I am the parent of a preemie, and I need you to answer my questions so I can sleep at night.

Matt
Visit our online boutique for the latest in fashion and fun for preemie through toddler

This is a question that I have always had after my daughter was delivered. Leading up to her birth, I had read so many books and articles on this subject and, have to say, was really looking forward to it. When my daughter was born early via c-section, I did feel a bit slighted, and wondered if we would have the same relationship as a mother who delivered “normally”.

A writer who’s posts I enjoy reading, Valorie Delp, had a post recently that I felt did a good job explaining things. Here’s a brief excerpt:

I have to say that I’ve never heard a mother who has delivered both vaginally and via c-section say that there is no difference. (I’m sure there’s someone out there that might prove me wrong.) But the truth is, if we refer to bonding as defined scientifically above, you do miss out on that initial hormonal response by necessity.

Read the rest of the article here.

Now that my daughter is almost three, the truth is that in many ways I feel that I bonded more with my daughter because she did come into the world the way she did. The emotion I felt, and my consuming desire for her to become healthy and thrive caused me to bond with her more than I think I could have otherwise.

I agree with Valorie, bonding is bonding, and your personal definition of what that means is something that science and medicine will never be able to touch.

Aline
Visit our online boutique for the latest in fashion and fun for preemie through toddler.

After reading an amazing story written by Nicole Cann, the mother of Nicholas, born 100 days too early and weighing only a pound. She has released a documentary entitled “little man’, which tells their story.

Sometimes, with our daughter being almost three, I tend to push aside those emotions and fears associated with the early days of my daughter’s life – a typical male response, I think, to adversity and emotional trauma. However, Nicole’s heart-wrenching story not only caused those feelings to rise back to the surface in droves, but also got me thinking about the lives of the parents of preemies, and how they are affected not only by the birth of a premature child, but also on an ongoing basis. I have only been a father for three years, but I imagine I will carry these feelings for the rest of my life. The following is my perspective on what being a father of a premature baby represents, and how it has changed and affected me over the years.

Every cold, fever, cough, runny nose, tumble, strange movement and sometimes even certain lighting, will make your heart race, regardless of the severity.

Expect parents of healthy full-term babies to think you worry too much, are too concerned with what and how much your baby eats, are obsessed with cleanliness, fret over the temperature her room too much and spoil her with too many gifts and too much attention.

Somewhere, deep inside, you will lose some of that “toughness” you had before your child was born. If you were never a big cryer, you can expect some tears once and a while, sometimes triggered by what is seemingly the most insignificant event.

Many of your peers and other parents will grow weary of hearing about how difficult and traumatic your experience was. I expect that somewhere someone is reading this, rolling their eyes and saying “Oh Please! We get it. It was hard having a preemie. Now move on.”
Be prepared to experience the desire to somehow wish your own experience on them. Of course, none of us would vocalize this, and most of us wouldn’t really want it to happen, but it exists nonetheless. My advice: allow your mind to consider it for a moment, then dismiss it. As I myself could never experience the maternal depth of love that my wife feels for my daughter, I cannot expect anyone who has not endured the early stages of premature life to relate to it either.

You will develop a love/hate relationships with doctors, pediatricians, the whole medical profession. While they are amazing people and, in my case, helped nurture my baby girl to full health for almost two months while I stood helplessly watching, you will inevitably have had experiences with some of them that have made your blood boil. The simple fact of the matter remains that doctors, interns, nurses, etc. are human beings. I have yet to find a vocation in which every single member radiates a glowing personality. In my opinion, its OK to question them. Its OK to tell someone you’d like your child to be treated by someone else. Its OK to tell an intern that you think they are being cold and uncaring, and that perhaps there’s more to med school than big houses and fast cars on the other end. Ultimately, you will be affected by a poor bedside manner for the rest of your life. A physician will be affected by pointed questions, observations or requests for a few minutes. And you have a lot more to lose than they do.

Finally, and probably the hardest for me to deal with personally, you will be completely overwhelmed by the significance of your actions and the choices you make concerning your child. While I am sure that every father, regardless of the length of pregnancy, feels this, the care that she was given in the NICU and the qualifications of those giving it makes your own world experience and judgement seem almost laughable. I compare it to something I once read where convicts who had served lengthy sentences actually felt safer back inside the penitentiary rather than left alone on the streets to fend for themselves. There is no more support. No more advice. It is up to you and you alone, and that is a tremendous responsibility unlike any I have ever known.

After having spent my life desiring different material things, setting lofty financial goals for myself and striving for what I thought was important I know realize that there is only one true thing I want to be able to say when looking back on my life as a father and husband.

“I did a damn good job.”

Matt
Visit our online boutique for the latest in fashion and fun for preemie through toddler.

Since the last post was all about us, this one is all about someone else.

I enjoy spending time reading several preemie blogs around the net. Most of them are encouraging, some are tragic, others are fun. I just now came across a blog written by a Neonatologist, called Neonatal Doc.

His topics are poignant and personal, and I find them to be extremely heartfelt and sincere, although sometimes controversial and painful to read. His most recent post, entitled “Loss”, moved me in a way I haven’t felt since my daughter’s stay in the NICU. I find it somehow refreshing to hear perspective from the “other side”; the comments in particular on this post actually choked me up.

For whatever reason, it appears that, last July, Neonatal Doc mysteriously stopped blogging with no explanation as to the reason why. From what I can tell, many readers are very disappointed and worried. Because of the content and tone of his last post, one does worry about his well being. We all know that these issues and events are devastating for Mothers and Fathers, but do we ever really take the time to consider what affect they may have on those who cared, or are caring, for our children?

To Neonatal Doc and others like you who dedicate so much of yourselves to our precious sons and daughters, we are forever in your service.

Matt
Visit our online boutique for the latest in fashion and fun for preemie through toddler.

We’ve gotten a lot of emails and requests for some pictures of our daughter, Francesca. So we thought it would be fun to put a little photo montage together of the past (almost) three years. We hope you enjoy looking back on her life as much as we do! (We know this one’s a little self-indulgent, but hey, we’re entitled, right?)

Matt & Aline
Visit our online boutique for the latest in fashion and fun for preemie through toddler.

Are all mothers of preemie babies as scared as I am? Does your mind go back and forth about having another child one day and the next, absolutely not?

Almost three years later I still feel anxiety at the thought of getting pregnant and having another preemie. Will it happen again?

I am so satisfied and proud of my little girl, Frankie. But sometimes I watch her run around the house looking for things to do, I wonder if she’s bored. She would really benefit from having a sibling I think to myself. They’d play together and Frankie will help raise her little brother or sister.

I was diagnosed with preeclampsia at exactly 32 weeks into my pregnancy. Fours days later our daughter was born via emergency C-section rendering our lives from dreamy happiness to terrified stupor. We had absolutely no idea what to do, how to feel and what was going to happen next. It took me an entire year to get over what happened and the depression that followed. An entire year to calmly accept the occasional sneeze, cough and spit up without overreacting and feeling she was going to fall apart at any minute. And even now (as I’m writing this) nothing has taken away the unexpected tears that rush out of me from nowhere at a single memory, or thought, even a smell that brings me back to the beginning days of Frankie’s arrival.

I generally don’t think of myself as being selfish. On the contrary, I’m known for my generosity and caring for others, down to a fault! But the way I feel about having another baby makes me feel selfish. Selfish for my daughter who possibly won’t know the joy of having a sibling and the memories she’ll grow to cherish from her childhood.

Am I emotionally not ready to accept the things we have no control over?

Or am I scarred for life?

Aline
Visit our online boutique for the latest in fashion and fun for preemie through toddler.

We have spent a lot of time searching for meaningful content for The Playpen. One of the sites we found, http://www.premature-infant.com/, is run by a NICU nurse and mother of a preemie, and is a great resource for preemie info and links. One of the articles on her site, “NICU Do’s and Don’ts” is a fantastic article about how new preemie parents prefer to be treated in the NICU. We’ve pasted the article below, but you can read it on there site by clicking http://www.premature-infant.com/DosandDonts.html.

We hope you enjoy it!

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