The Playpen » Preemies

Calling All Preemies!

Aline & Matt — Tue, 12 Aug 2008 17:47:02 +0000

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!

Preemies – Are They Worth The Cost?

Aline & Matt — Thu, 19 Jun 2008 00:52:49 +0000

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

Closed! The End of Frankie’s Battle with ASD

Aline & Matt — Sun, 27 Apr 2008 22:50:36 +0000

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:

Frequent respiratory infections

Difficulty breathing (dyspnea)

Shortness of breath with activity

Sensation of feeling the heart beat (palpitations) when child reaches adulthood

Severe complications include:

Pulmonary hypertension

Arrhythmias, particularly atrial fibrillation

Heart failure

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

Do Doctors Hate Preemie Parents?

Matt — Sat, 19 Apr 2008 01:31:09 +0000

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

Did I Miss Out on Bonding Because I Had a C-Section?

Aline — Tue, 18 Mar 2008 04:48:46 +0000

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
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What it Means to be the Father of a Preemie

Matt — Mon, 10 Mar 2008 23:26:48 +0000

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.

One of the Most Touching Posts I Have Ever Seen

Matt — Tue, 19 Feb 2008 23:37:44 +0000

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.

Frankie – The Life of a Preemie

Matt — Sun, 10 Feb 2008 23:35:53 +0000

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.

Scared of having another preemie?

Aline — Fri, 25 Jan 2008 05:56:25 +0000

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
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NICU Do’s and Don’ts

Matt — Mon, 07 Jan 2008 01:08:14 +0000

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!

Do: Ask me what I like to be called. I may or may not want to be called “mom.” I would like to be called by my first name.
Do: Send me a Polaroid of my baby when I can’t get out of bed because I have had a C-section.
Do: When referring to my baby, please don’t call him “your baby” (as if he is your baby) or “the baby.” He is your patient, but he is my baby. The best possible way to refer to my baby is by calling him by his first name.
Do: Give me a tour of the nursery soon after I arrive so I know where the pumping room is, where to store breast milk, the lounge, bathroom, etc. (Remember if I am groggy or having a difficult time coping, I might need a second tour later.)
Do: Make a cute nametag for my baby’s bed.
Do: If you are the nurse caring for my baby, acknowledge me when I come in the room so I know who you are.
Do: Tell us when I can speak with the doctor.
Do: Promote attachment between parents and their babies. Show me that you are confident I will not cause my child any harm.
Do: Tell me how to read stress cues so I know the best time to touch my baby and when to stop.
Do: Show me how to do things that I can do to help care for my baby.
Do: Realize that once I am able to do some kind of activity for my baby, it is really stressful to have a staff member decline my doing it because they are unable to help.
Do: Acknowledge when we do things correctly, praise us, thank us!
Do: Tell me how to touch my baby in a developmental and soothing way.
Do: Allow me to hold my baby as early as possible-it is the best part of being a parent.
Do: Help me to do Kangaroo Care as early as possible. Please check on me during this time to make sure I am okay.
Do: Encourage us to make a tape to leave in the isolette; singing, talking, or telling stories for my baby. Tell me what I can do to decorate my baby’s bed.
Do: Create an environment for my baby that seems healing and supportive (ie. No harsh lights or minimal noise, but cluster care when possible).
Do: Put up a big sign that says, “SHHHH…BABIES ARE SLEEPING!!!!”
Do: Quietly set things down on the isolette—remember the sound inside is much louder!
Do: Take pictures (with a Polaroid or with a disposable camera I have left for you) of our babies when we’re not there, or when we’re cuddling or spending time with our babies. We may not think to get our cameras out at those special moments, and we may be missing some big ones when we can’t be there.
Do: Talk to my child and explain that you are about to touch them.
Do: If you find it necessary to shave my baby’s head for an IV, please save a lock of hair from the “haircut.”
Do: Provide support without judging.
Do: Realize that every parent is different and responds differently. Find out how we want to deal with things.
Do: Understand that parents, like our children, will have “crisis days” and they may not coincide with the status of my baby.
Do: Work to build genuine connections with parents. Even when there is nothing concrete or specific that you can do, your presence, attention, and compassion bring strength and comfort.
Do: Help parent of preemies build a community by removing obstacles preventing families from finding comfort in the experiences of others. Do what you can to create an environment in which parents can talk and support one another.
Do: Provide honest information and clear explanations. Please allow us to ask questions.
Do: Let us know when tests are being done on our babies (even if it means a quick call to home) and explain what they’re for-in parent’s terms. (Also let us know if any scheduled tests/procedures have been cancelled and why.)
Do: Let us know that we are allowed to read our baby’s chart.
Do: Give us access to as much information as possible. Have a parent library with current books, videos, and a list of websites available. We would love to be able to buy books right there in the hospital-please encourage your gift shop to stock a supply of books and resources that we may purchase to help us through this process.
Do: Give us complete information that is significant to future possible outcomes (concerning all drugs, procedures and alternatives that we can choose from).
Do: Realize that the truth is always easier for us to deal with in the long run. If a bleak prognosis can be expected, that prognosis won’t be any easier if it comes as a complete and total shock later on.
Do: Respect parents enough to allow them to feel all their jumbled emotions without running away or minimizing what they feel.
Do: Talk with us about other things than our baby to help us pass the time and get our minds off things (maybe even ask us about the birth or things unrelated to our baby). It’s nice to be treated as a friend.
Do: Support us if we are unable to breast-feed/express milk and must use formula for whatever reason.
Do: Refer me to a lactation specialist if I am having trouble lactating or feeling uncomfortable with pumping milk or breast-feeding.
Do: Please respect my efforts in pumping my breast milk and breast feeding my baby. Thaw only what breast milk is necessary for each feeding-it is a precious commodity! Please say only encouraging remarks about my breast-feeding efforts.
Do: Do ask me if I would like to have a screen put up when I am trying to nurse my baby, as it is a very exposing experience with these tiny babies. Please check in with me often when I’m behind the screen, especially when the alarms are going off.
Do: Make sure to let me know when my supply of breast milk is running low so I can make sure to bring some in.
Do: Dress my baby in her own clothes whenever possible.
Do: Find out our schedules so we can be there for feedings, baths, and maybe even a quick holding during weights and isolette changes.
Do: Encourage me to write notes to be left on my child’s bed that share my special knowledge of my child with the staff.
Do: Give credence to a parent’s intuition about their child. If I tell you, “Something is wrong”, act on that information as if it were true.
Do: Congratulate us on our baby’s milestones! (Diapers finally taped on, larger diapers, changing to a new type of bed, going to a lower oxygen setting, getting off the vent/CPAP, wearing clothes, learning to suck/swallow, being held, etc.)
Do: If you have not cared for my baby before, please read the chart carefully and note what times I usually come by.
Do: Put graduate pictures of former patients in the waiting room.
Do: Laugh with us.
Do: Cry with us.
Do: Treat us like real parents.

Don’t: Call me “Mom.” Please ask me what I would prefer to be called.
Don’t: Move the baby without telling me ahead of time, or at least meeting me at the door.
Don’t: Tell me how I should be feeling or that I “need to be patient.”
Don’t: Dismiss or diminish my concerns. I am not used to seeing my baby have bradycardias or color changes.
Don’t: Assume that I don’t care for or love my baby if I don’t touch him. I may be very scared or overwhelmed.
Don’t: Tell me my baby had a bradycardia because I was touching him, feeding him, or doing something wrong.
Don’t: Please never treat me as if I am stupid. All of the medical terms and information are very difficult to understand and comprehend at times, especially since I am probably feeling a tremendous amount of stress.
Don’t: Write harsh judgements about me in the nurse’s notes, unless the information you are recording is known to you without question from both observation and communication.
Don’t: Assume anything about me or my family if we are unable to visit regularly. My family may be very loving and supportive, but cannot come to the NICU for other reasons.
Don’t: Sound annoyed or make insensitive comments when I call to check on my baby. The phone is sometimes my only connection to my precious baby.
Don’t: Do the tasks that I have already been doing (bath, diapers, feedings, etc.) if you know I am on the way to the nursery. It takes away what little parenting I can do.
Don’t: Act as if breast-feeding is not crucial for my baby. There is enough scientific evidence of its importance to preemies that it should be encouraged to breastfeed. However, if I am unable to produce milk, please do not make me feel inadequate by comparing me to all the other mothers who have no problem with lactating.
Don’t: Talk loudly or keep the lights on unnecessarily.
Don’t: Please be careful to not share information about a baby with the wrong person. Please check and double check that you have the correct information with the correct parent.
Don’t: Talk about a baby in a negative way when the parents are gone. It is morally wrong, very unprofessional, and may also hurt other parent’s feelings (wondering what they say about my baby when I am not here).
Don’t: Try to instill your personal views (philosophies, religion, or ethics) on us. Allow us the same freedom to choose and have our views, as you were allowed to choose and have yours. (This includes miracles happening in the NICU.)
Don’t: Be afraid of my emotions, or of your own.
Don’t: Let me travel this difficult journey alone.

Edited by: Dianne Maroney
Andrea O’Brien
Sheri DeBari

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