preemies
The Preemie Primer: Recommended Reading for Mamas on Bedrest
September 2nd, 2010When you are pregnant, you are bombarded with information and advertisements for everything from infant swaddling blankets, to formulas, to cord blood banking, to strollers. Much of the information that I received in my bag at each of my first obstetrical visits was useless. They were simply little leaflets trying to sell me things that I didn’t really want or need. How much better it would have been if I had received a copy of The Preemie Primer: A Complete Guide for Parents of Premature Babies-From Birth Through the Toddler Years and Beyond.
The Preemie Primer was written by Jennifer Gunter, MD, a board certified obstetrician/gynecologist, who is also board certified in pain medicine and board certified in physical medicine and rehabilitation. At a first glance it seems like Dr. Gunter is yet another “expert” telling you what the “scientific evidence” says you should do for your baby. While Gunter offers comprehensive information on caring for a premature infant, the book is far from dry and overly ‘jargoned’. At its best it is a deeply personal account of how Jennifer Gunter, wife and mother, navigated the peaks and valleys of caring for her markedly premature boys Oliver and Victor (born at 26 weeks) while also grieving the loss of their triplet brother Aidan, born at 22 weeks. She is simply sharing what she learned and knows with other parents and has created a powerful resource for parents of preemies.
Now I don’t want to discount Dr. Gunter’s knowledge. She has done a great job of pulling together the necessary medical information pertaining to preterm labor, prematurity and caring for mom and baby (ies) post partum. But the honest truth is that much of the “medical” information is freely available-on the web and in books and texts. But The Preemie Primer is for parents of preemies who, at a time when this information is in critical need, they dont’ have a nanosecond to spare seeking it out. Part of what makes it such an excellent resource is that not only is the medical information readily at hand in one place, Dr. Gunter also includes information on self care for parents (asking for help with post partum depression for example, deep breathing, meditating…) and navigating the complex US insurance system to get the care premature babies and children desperately need. Yes, the chapters on “The Mind-Body Connection” and “Making the System Work for You” were really helpful and informative and a welcome departure from the sterile statistics, instructions and definitions.
But far and away the “precious jewel” of this book is that it is written by Jennifer Gunter, wife and mother to two 
navigated the peaks and valleys of caring for her markedly premature boys Oliver and Victor (born at 26 weeks) while also grieving the loss of their triplet brother Aidan, born at 22 weeks.premature little boys and an angel in heaven. The success of The Preemie Primer results from the fact that as I read it, I felt as if I was sitting across from Jennifer Gunter, drinking coffee and chatting as she tells her story. I think the most powerful parts of the book are the gray insets that tell her personal story, her personal struggles to care for her living boys while at the same time grieving her angel Aidan. The times she was so overwhelmed with emotions that all she could do was cry. At those times her credentials were irrelevant. She was a mom, struggling for herself and for her sons, and as vulnerable as the rest of us.
One of my favorite vignettes was her conversation with the hospital representative as she disputed charges for Aidan. Anyone who has ever had the frustration of speaking with hospital representatives who are insensitive, unyielding and basically ignorant to medical procedures will totally relate to this conversation. Gunter was arguing to have charges made for Aidan’s “care” removed from her hospital bill. You feel the pang in your own heart as you hear Gunter tell this representative that Aidan died and did not receive care as is indicated on the bill.
While I like and highly recommend The Preemie Primer (Remember, I said it should be in every new OB bag!), I realize it is a tough sell. In the same way that obstetricians don’t discuss the possibility of bed rest until a woman is having it prescribed, I doubt The Preemie Primer will become recommended reading for mainstream pregnancy. And this is unfortunate. Having had a late preterm birth, I would have loved to have had even an inkling of what to expect. As high risk as I was, no one ever even mentioned that I was at risk for preterm labor. I was never counseled about the signs and symptoms of preterm labor. When I delivered my daugher at 36 wks and 6 d, I fully expected to have her put on my chest, to nurse her and then to have her in my room. Instead she was whisked away from me by nurses and neonatologists and then admitted to the NICU (which is never mentioned or visited in hospital tours). I was completely blind-sided by the entire experience.
Our culture likes to “stay positive” and always “look on the bright side”. But turning a blind eye to potential catastrophe is just plain stupid. No woman wants bed rest, a premature infant or, heaven forbid, to have a stillbirth. But the reality is that these events happen. Just because we don’t talk about them or “don’t have that in my family or medical history” doesn’t mean that they can’t happen to us. Obstetricians and midwives should talk about them (at the very least) and give parents tools and resources that they can readily access in the event that the most awful and unexpected happens. So yes, I do think that The Preemie Primer should be put in OB bags-or made readily available in OB offices, hospital gift shops, family resource centers and the like.
We have to face the fact that not everyone has the picture perfect pregnancy, labor and delivery. But things needn’t spiral completely out of control. Research shows that patients who feel that their health care providers are honest and up front with them, explaining every test and treatment and potential outcome are far less likely to come away with ill feelings or to sue their providers. We have to have the hard conversations. But if OB’s and midwives don’t want to do that, or feel uncomfortable or as if they are “scaring” their patients, then have resources readily available. As Dr. Gunter said herself during our podcast interview, “Plan for the worst but expect the best”.
The Preemie Primer is available on this website via our Amazon.com store in the Infancy/Childhood section. We respectfully ask that if you decide to purchase The Preemie Primer as a result of reading this blog post or listening to the podcast interview with Dr. Gunter that you do so via our store as it helps to fund the operation of this website.
Share your stories of preterm labor and caring for a premature infant below.
Mamas on Bedrest: Your Love is The Medicine Your Little One Needs to Survive
August 31st, 2010The Most Heartbreaking News
It was almost too heartbreaking to read. After 20 minutes of trying, neonatologists had to tell Kate Ogg that her tiny little son Jamie, born at a mere 27 weeks and weighing only 2 lbs, was gone.
A Mother’s Loving Touch
Despite the fact that twin sister Emily was doing well, Kate Ogg and her husband David clung to each other and tiny Jamie completely absorbed in their grief. “I couldn’t let him go,” says Ogg. She stayed there, clutching the tiny body to her chest. Miraculously, after two hours of being hugged, stroked, talked to and kissed by his mom, little Jamie began showing signs of life. First, it was just a gasp. The doctors assured Ogg and her husband that this was simply reflex a breath and that little Jamie was in fact gone. But when the infant began to stir a bit more, Ogg put a drop of breast milk on her finger and little Jamie drank it. Ogg could hardly believe her eyes. Then little Jamie opened his eyes, lifted his hand and grasped her finger. He finally turned his head from side to side. Even the doctors stared in disbelief. Little Jamie was alive, safe and secure in his mother’s arms against her chest. 
Kangaroo Care
Numerous research studies have reported on the effects of a mother’s love and touch on infants, especially premature infants. Kangaroo Care, the position that Ogg unknowingly assumed with little Jamie, consists of placing a diaper clad premature baby in an upright position on a parent’s bare chest – tummy to tummy, in between the breasts. The baby’s head is turned so that the ear is above the parent’s heart. Many studies report that this position soothes the infant; steadying heart rate, calming respiration, alleviating tummy upset and soothing colic. This soothing position has also shown to help babies sleep, gain weight and thus progress enough to leave the NICU and go home. Some researchers dispute the efficacy of kangaroo care, stating that data is too subjective and there are few measurable endpoints. Most studies have proven that Kangaroo Care has a major, positive impact on babies and their parents. Some studies have proven there is no change, but no study has proven that Kangaroo Care has hurt either parent or baby.
The Mind/Body Connection, A Mother’s Love and Mamas on Bedrest
Jennifer Gunter, MD, gives a wonderful explanation of Mind-Body medicine in her book, The Preemie Primer.
“Mind-Body medicine is the idea that our thoughts and emotions influence physical health, and harnessing this connection improves both emotional and physical well-being.”
Gunter further explains that chemicals such as neurotransmitters and hormones send messages all over the body. These chemicals can either stimulate a stress response or be controlled and used to effect positive health outcomes. While thoughts are not enough to cure disease alone, they can certainly be complimentary.
So what does this mean for Mamas on Bedrest? It means that your thoughts can influence your pregnancy outcome. Bed rest is never anyone’s idea of a great way to spend pregnancy. Unfortunately, about one out of every five pregnancies ends up on bed rest for part of the pregnancy. You may be feeling somewhat discouraged on bed rest, worried and afraid that things won’t turn out well. Stop those negative thoughts-NOW! Because your thoughts affect your body’s chemicals, negative thoughts send out negative brain chemicals and hormones and can have a negative effect on your health and the health of your baby. Start now to tell your baby how much you love him or her. Sing happy songs to your baby, read to him and envision holding your little darling. While this may seem silly, you are actually changing the chemical make up of your body and the chemical make up of your pregnancy. But don’t believe me, look at what soothing words and loving thoughts did for little Jamie Ogg!
How have you used positive imagery and soothing thoughts to get you through your bed rest experience? Share you successes as well as you challenges in our comments section.
Do finances have you worried while on bed rest? Stay tuned to some exciting news coming from Mamas on Bedrest & Beyond.
Hypothetical question: Preemies & Maternty Leave?
August 24th, 2010
Libby283, A mama to be posted the following “hypothetical question” to the community on The Bump.
This is just a hypothetical question and wondering if any other ladies had it happen and how it was handled…
What happens with maternity leave if you have a preemie baby that will require a lengthy hospital stay. For instance I only get 6 weeks maternity leave with my employer. If I delivered tomorrow, at 30 weeks, the baby would be in the hospital for the duration of the maternity leave. Does your doctor & employer let you go back to work early and then use the remaining leave time for when the baby comes home?
Just curious, but I hope I don’t have to worry about it as a reality.
There were some conflicting responses to her question, and I thought it a really good question to respond to on Mamas on Bedrest & Beyond. We’ll also be posting a reply on The Bump.
First and foremost, Libby283 is entitled to 12 weeks of unpaid medical leave as stipulated in the United States Family Medical Leave Act (FMLA). This act states that eligible employees are entitled to up to 12 weeks of unpaid leave with guaranteed job protection each calendar year to,
- Deliver a baby,
- Bring home An adopted or foster child
- Care for a critically ill family member such as a spouse, child or parent
- Heal and recuperate from serious illness.
Here is the actual text of The Family Medical Leave Act as posted on the US Department of Labor Website:
The Family and Medical Leave Act (FMLA) provides an entitlement of up to 12 weeks of job-protected, unpaid leave during any 12-month period to eligible, covered employees for the following reasons: 1) birth and care of the eligible employee’s child, or placement for adoption or foster care of a child with the employee; 2) care of an immediate family member (spouse, child, parent) who has a serious health condition; or 3) care of the employee’s own serious health condition. It also requires that employee’s group health benefits be maintained during the leave. The FMLA is administered by the Employment Standards Administration’s Wage and Hour Division within the U.S. Department of Labor.
So Libby283 is actually covered by the law as well as her employer.
What gets sticky is when people try to combine two or more leave policies to get more time off. The scenarios play out very differently depending on your employer, your state laws and how you choose to use the federal law. Recently in Massachusetts, the courts ruled that the Massachusetts Maternity Leave Act entitled women to 8 weeks maximum for maternity leave (See Massachusetts Maternity Leave Act: No Help for Mamas on Bedrest). since that is only a state ruling, women could then attach an additional 12 weeks onto their leave as stipulated by the Family Medical Leave Act. What is allowed varies from state to state so women planning to become pregnant should find out what they are entitled to and to make provisions in the event of a complicated pregnancy (requiring bed rest) and/or a complicated delivery requiring an extended hospital stay for mama, baby or both.
What employers choose to do becomes another matter. Libby283’s employer can say, okay, you can have 6 weeks paid leave (not sure if she is being paid or not) but if you want the entire 12 weeks, the remaining 6 weeks is unpaid. In that way her employer has not violated FMLA and has not breached the company policies. Likewise, the company can say, you are entitled to the 12 weeks of unpaid leave as stipulated by FMLA, but we are not obligated to pay you. Or, if they are a really family friendly company, they may even offer 12 weeks of paid leave (haven’t seen this one in a while, but one could hope!)
As the law reads you are entitled to 12 weeks family medial leave total per calendar year. So Libby283 could in fact split her time off between when she actually delivers and is discharged and when her baby comes home. While this is good in theory, it is my experience that when a mama has a preemie, she is not back to work but in the NICU any chance she gets, so time off could still be an issue.
It’s clearly evident from Libby283’s question and the laws that this is a confusing issue. Mamas on Bedrest & Beyond is committed to working with other organizations to advocate for improved maternity privileges including extending maternity leave and having maternity leave be paid. Subscribe to our blog and e-newsletter to stay abreast of what is happening with maternity leave and how we are working to initiate change at local, state and national levels.
