bed rest

The Preemie Primer: Recommended Reading for Mamas on Bedrest

September 2nd, 2010

When 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.

Pre-Eclampsia: A frequent reason Mamas are prescribed bed rest

August 25th, 2010

Pre-Eclampsia-Definition and Background

Pre-Eclampsia is a medical condition that only affects women during pregnancy and post partum. It is characterized by high blood pressure and protein in the urine, subsequently creating a toxic physical environment for both mother and baby. It is frequently the reason a pregnant woman is prescribed bed rest. While it can occur anytime during pregnancy, it typically occurs after 20 weeks of pregnancy, in the late second or third trimester. Pre-Eclampsia occurs in 5-8% of all pregnancies globally and is the cause of some 76,000 maternal deaths and 500,000 infants annually.

Pre-Eclampsia can rapidly become a serious or even fatal medical condition. Women should know the signs and symptoms of pre-eclampsia and report any signs or symptoms they have to their health care provider immediately.

Major Signs and Symptoms of Pre-Eclampsia

None – The problem with Pre-Eclampsia, much like other hypertensive disorders, is that it often has no symptoms.
Hypertension is known as “the silent killer” and pre-eclampsia is no different. Bed rest has been shown to reduce blood pressure and frequently reduces the signs, symptoms and complications that may arise as a result of pre-eclampsia. Even though bed rest is inconvenient at best and quite uncomfortable and physically challenging at its worst, if your health care provider prescribes bed rest for pre-eclampsia, Please follow his or her directions, even if you feel fine.

Hypertension – Hypertension or high blood pressure is defined as two blood pressure readings over 140/90 at two different times at least six hours apart. However, pregnant women with normally low blood pressure, such as 110/65, may be diagnosed with pre-eclampsia prenatally or in the post partum period when their blood pressure rises to 135/80 and/or they develop signs and symptoms of pre-eclampsia.

In 1990 the National Institutes of Health, National High Blood Pressure Education Program: Working Group Report on High Blood Pressure in Pregnancy issued the following research guidelines:

In the past it has been recommended that an increase of 30 mm Hg systolic or 15 mm Hg diastolic blood pressure be used as a diagnostic criterion, even when absolute values are below 140/90 mm Hg. This definition has not been included in our criteria because the only available evidence shows that women in this group are not likely to suffer increased adverse outcomes. Nonetheless, it is the collective clinical opinion of this panel that women who have a rise of 30 mm Hg systolic or 15 mm Hg diastolic blood pressure warrant close observation, especially if proteinuria and hyperuricemia (uric acid [UA] greater than or equal to 6 mg/dL) are also present.

For this reason, it is extremely important that women know what their baseline blood pressure readings are and at each prenatal visit they ask their providers what their blood pressure is. In this way, both health care provider and patient can be on the look out for blood pressure abnormalities and address them as soon as possible.

Swelling (Edema) – Swelling can be an insidious symptom of pre-eclampsia because so many women experience swelling of their hands and/or feet or even their faces when they are pregnant. However, when the swelling is significant enough to change your facial features, you should notify your health care provider immediately, advising them that you believe the swelling has become excessive. You may need to show them a photo of you prior to pregnancy, your driver’s license for example, to prove your point. In any event, if swelling concerns you, make sure it becomes a concern of your health care providers and that it is addressed.

Proteinuria – Proteinuria occurs when proteins, usually filtered by the kidneys and retained in the blood stream, leak into the urine because the small blood vessels in the kidneys have become damaged allowing the proteins to pass through. (This is usually due to your elevated blood pressure. Remember, pre-eclampsia creates a toxic physical environment to both mother and baby!)

Other Common Signs and Symptoms of Pre-Eclampsia

Sudden Weight Gain – Since weight gain is a hallmark of pregnancy, it’s often hard to discern between regular pregnancy weight gain and weight gain associated with Pre-Eclampsia. The rule of thumb is that if you start gaining more than 2 lbs per week or more than 6 lbs in a month, you should consult with your health care provider as this could be an indication of pre-eclampsia.

Headache – Severe, migraine-like headaches which are often one sided and dull and throbbing could be a warning that your blood pressure is dangerously high. Contact your health care provider immediately for evaluation.

Nausea or Vomiting – While nausea and/or vomiting is common in the first trimester, it usually abates during the second and third trimesters. If you have sudden onset of nausea and/or vomiting in the second or third trimester, contact your health care provider immediately for evaluation.

Changes in Vision – If you experience any sudden blurred vision, double vision, flashing spots, or sudden light sensitivity, this is another warning that your blood pressure may be dangerously high.  Contact your health care provider immediately for evaluation.

Racing pulse, mental confusion, heightened anxiety, trouble catching your breath – While all of these symptoms can occur in pregnant women, when they suddenly occur from out of the blue and especially if they occur together, this is cause for concern. Contact your health care provider immediately.
Stomach or Right Shoulder Pain – I want to be a bit more specific here. The pain you may be experiencing here is right upper quadrant abdominal pain, specifically, liver pain. The pain may be “radiating” or “referred” to the right shoulder, but its origin is in the liver. This pain requires immediate attention as it is an indication that the liver is under stress and you may be suffering from HELLP (Hemolysis-bursting of red blood cells, Elevated Liver enzymes levels, and Low Platelet count) as serious obstetrical complication. It is imperative that you be evaluated immediately if you have symptoms of HELLP to avoid more serious complications or even death.

Lower back pain - Low back pain is so common in pregnancy that it is difficult to distinguish between the typical low back pain of pregnancy and low back pain associated with pre-eclampsia. If you are unsure, certainly consult your health care provider. But consult with your health care provider immediately if the low back pain is present with right upper quadrant abdominal pain as this may be another sign of pre-eclampsia.

This is a cursory overview of Pre-Eclampsia and we will delve into the subject with more depth in coming blog posts. Just remember that pre-eclampsia can have serious medical consequences for both you and your baby including death, so if you are concerned about symptoms, consult with your health care provider and have an immediate evaluation.

This list of signs and symptoms is edited and reprinted from the list presented on The Pre-Eclampsia Foundation website. This website is a holds a wealth of information on pre-eclampsia; current research and resources for more information and to get more help and/or support.

Did you have pre-eclampsia during your pregnancy? Are you a Mama on Bedrest now for pre-eclampsia? Share your story in our comments section below.

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,

  1. Deliver a baby,
  2. Bring home An adopted or foster child
  3. Care for a critically ill family member such as a spouse, child or parent
  4. 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). However, 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.