The Cost of Good Care

American-flag-stethascope

The healthcare industry is constantly evolving. Scientific research spurs on new discoveries, techniques, surgeries and cures. The economic environment dictates the distribution of healthcare. In the present day and age, there are many “what-if’s” about how and to whom healthcare is delivered. This post is not intended to be an epic dissertation on healthcare in America. The purpose, rather, is to explain to those inquiring why we are no longer pursuing medical care for our pregnancy in Madison, WI.

Upon learning that we were pregnant with quintuplets, the initial meetings with our fertility specialist and perinatologists were an emotional undertaking, to say the least. These medical specialists fought long and hard to convince us to pursue multi-fetal reduction. They wanted us to take the five and reduce to 2, maybe 3. This was never an option for us, and we made it very clear from day one. However, despite our stance, the perinatologists would not discuss a plan of care with us for over a month under their supervision.

Finally, nearly two months into our pregnancy we were able to sit down and discuss how we were going to make our pregnancy a success and give our unborn children the best chance at a happy and healthy life. We came prepared to this meeting, well read on terms and proactive treatments and even brought along a few research articles to discuss. The docs may have been a bit thrown off; one was not even prepared to discuss how to combat pre-term labor. Luckily, his colleague was.

We had a long conversation about what their practice was willing to provide and what they were not. They were willing to provide monitoring prior to 24 weeks of gestation, which simply meant monthly ultrasounds. They were willing to provide a nutrition consult with their dietitian and psychological care with their social worker. But, they were not willing to consider preventative measures, and what I would consider proactive care. Despite the research I held in my hand, they would not acknowledge the efficacy of a cerclage (stitching of the cervix), non-stress testing (contraction monitoring), intensive tocolysis (treatment of contractions to delay labor), or even bed-rest. Instead they encouraged me to continue to take my prenatal vitamin and told me it was fine to exercise up to 30 minutes a day.

This information did not sit well with me, so I reached out to other mothers of quints and they were appalled. They encouraged us to get a second opinion and quickly. I didn’t at that point. I decided that I needed to come to trust my current healthcare practitioners; I did not want to seek care elsewhere knowing: 1) This would mean leaving home and 2) Our insurance would not cover it.

Then, at 18 weeks we sat across the table from another perinatologist from the same practice and a clinical nurse specialist. They informed us that we would most likely lose this pregnancy in the next 3-4 weeks. I asked and begged for them to reconsider a cerclage, and they said it would not help but would actually put me in more danger of losing my pregnancy. They shared that cerclages are only provided to persons with incompetent cervixes, which is a diagnosis typically given to moms only after having a previous miscarriage prior to 24 weeks. He told us not to give up hope but that there was essentially nothing else we could do. He encouraged me to continue to eat right and said I could still exercise up to 30 minutes daily. I asked about bed rest, tocolytic drugs and contraction monitoring and was once again told these treatment options would be of no help. Then, came the moment I realized that care at this clinic was not our only choice. I sought a second opinion.

The second opinion came from a renowned high-risk perinatologist in Arizona, who many other quint mom’s highly recommended and adored. They loved him for a very important reason; he saved their pregnancies. After a 30-minute phone call with this doc, also known as the, “Quad God,” I learned that if I didn’t have a cerclage within the next 3 days, we would, in all likelihood, lose our babies. He had a recipe for success that was incomparable to other docs’ practices due to his extensive experience with high order multiples. He has delivered 101 sets of quadruplets, 15 sets of quintuplets and 2 sets of sextuplets. To put that in perspective, our previous docs had delivered just 1 set of quads, no quints, and no sextuplets. Additionally, the average gestational age of quints delivered under his care is 33 weeks and 1 day… Academic research indicates the total population gestational average is somewhere between 25 and 27 weeks. The “Quad God’s” success was quite simply unheard of.

The next few days flew by as we attempted to plead with our insurance company to cover this care. However, to this day, they continue to deny us because:

  1. The services requested are/were with a non-participating provider.
  2.  The services are/were not medically indicated because they are not appropriate to treat the condition and do not represent the standard of care to treat the condition.
  3.  The utility of prophylactic cerclage is unproven and there is evidence to suggest it may be detrimental and may be associated with an increase in preterm delivery and pregnancy loss.

However, here I sit to write this post at 24 weeks- 6 weeks later- with healthy babies developing within me.

So, many ask why am I still here? I have the cerclage, the pregnancy is stable and insurance continues to not be willing to pay a dime towards our care. Why would I not come back to Madison?

The answer to me is plain and simple:

1. There were no other participating providers in our insurance network besides our  initial maternal and fetal medicine specialists.

We were concerned with the care that was being provided by our previous providers for several reasons, including their unwillingness to consider preventative and proactive measures of care.  Even after the cerclage, they informed me that they would be unwilling to provide intense tocolysis, contraction monitoring and support strict bed rest. I have been receiving these treatments here in AZ since the moment I arrived.

2. Emergent care, via cerclage, strict bed rest, contraction monitoring and tocolysis, were/are all required and medically indicated, in order to, prevent pre-term labor.

There is a body of research, which supports these facets of care during multi-fetal gestation. Additionally, a cerclage is not an “experimental therapy” but again is considered a component of normal perinatal care in a high-order multiples pregnancy.

My current perinatologist has published over 25 peer-reviewed articles on the management of high-order multiples and has delivered 15 sets of quintuplets whom have exceeded the average gestational age by over 5 weeks. The previous specialists have never delivered, or managed, a quintuplet pregnancy and while they are revered clinicians in their areas of research, they have not published on the management of high-order multiple pregnancies.

The peace that I feel in pursuing treatment under this new doctor’s care is overwhelming. For the first time in this pregnancy, I am confident in the care that I am receiving.  I would fear for the well being of my babies if they were subject to the care of the practitioners in Madison. They have not demonstrated that they truly care about our five miracles, nor do they appear willing to proactively fight for a healthy pregnancy.

Unfortunately, these reasons are not convincing to our insurance provider. Therefore, we will continue to appeal and grieve this process with them, as we have since we initiated care outside of network. It is truly unfortunate that we cannot find comparable care within our insurance providers network. Our current doctor even offered to communicate his care plan to our previous docs, so that we could remain in-network, however they have denied all collaboration at this point.

Our biggest concern at this point, outside the healthy delivery of our 5 babies, is the financial livelihood of our family. The medical practitioners we are working with are very cognoscente of our financial situation and have been more than accommodating. But, we know that once I am admitted for closer monitoring and more intense treatment, the bills will begin to accumulate. Then, of course, will come the likely astronomical Neonatal Intensive Care Unit bill for 5 babies.

And so, we are witness to the cost of good healthcare in America. Still, we are simply unwilling to sacrifice our right to choose a qualified practitioner just because an insurance company is holding us financially hostage. We feel as parents-to-be that we now represent our children; we are now responsible for their well being until they are able to take on that responsibility themselves. We will fight, and continue to fight, for our children’s God given right to life, liberty, and the pursuit of happiness.

The Starting Line-Up

Quints

As many of you may have heard, our starting line is four girls and one boy!

The boy is currently guarding the gate and is located at the very bottom with the four little ladies piled on top.

On Tuesday, I had another ultrasound to assess heart rates and fluid. It also was another opportunity for a photo shoot. It appears that we have some shy gals and guy because each time they went to take a close up on their faces they drew there hands in front of their face. Either that or there was an epic game of peek-a-boo that we were witnessing!

17 weeks and counting

We are now at 17 weeks and counting, which is halfway to 34 weeks!

I thought I would show the fruit of all those supplements that I referenced in my previous post. I’m growing, the babies are growing and apparently it’s a bit contagious!

Cassie, Frank & JD at 17 weeks
Cassie, Frank & JD at 17 weeks

We also thought we would share our bumps with my mom and Grandma-to-be!

Mommy in the Middle
Mommy in the Middle

This picture is very special to me!

Mother's Day 2013
Mother’s Day 2013

2nd Trimester here we come!

We are all happy, healthy and going strong at 12 weeks and counting! Today we had our 2nd consultation with our perinatologists and this meeting was much more uplifting than the previous. It was a balanced discussion of impending risks, as well as, strategies to promote a healthy gestation. It appears that there is little medical intervention prior to 20-24 weeks. I, however, recognize that there is a lot I can do to help us all get to that 6 month milestone- the viability period.

My personal mission in the next 2-3 months is three-fold:

12 week bump
12 week bump

1) Gain weight. Researchers have published that women who have gained 75% of their total weight by 24-weeks have longer gestation periods. This means I have 40lbs to gain in the next 3 months, so I’m all stocked up on high calorie, high protein recipes and don’t forget my Up Your Mass Powder. I’ll most likely share my meal plan in the next few weeks for other mom’s of high order multiples.

2) Stay active as safely as possible. All that I have read encourages 30-minutes of aerobic exercise daily. I have been practicing this on “good” days  and I have to admit, it definitely is energizing and I even think it helps to combat the nausea a bit. I have also read that hydrotherapy is especially beneficial later on in pregnancy, so I plan on incorporating that as soon as I’m brave enough to buy a maternity bathing suit. I believe the more difficult achievement will be to practice bed rest when it comes time. I have to say I have been better at “taking it easy” than anticipated…I think it helps that I have 5 very important reasons to chill-out.

3) Continue to be a student of my body and our babies. I believe it will be important for me in the later months to be able to monitor and measure contractions, and currently I am not quite sure I know what those feel like. The doctors assure me that I will know them when I feel them. Some literature that I have read said that it is important to keep background contractions at less than 3.5 minutes apart. We’ll see how this all plays out.

Enough about me…on to those babies!

V-5 Family Photo
V-5 Family Photo

The second part of our visit today was focused on completing the 1st trimester screening which included anatomical assessments, heart rate assessments, nuchal scans, and numerical assignments. Overall, everyone is right on track. They are all just shy of 2.5 inches long, have all 4 limbs and strong heart beats between 150-155bpm. Also, the nuchal scan is an assessment of the thickness of the skin on the back of the baby’s neck. Greater thickness (> 2-3mm) is correlated with an increased incidence of congenital heart defects and Down syndrome. All of our little ones’ nuchal scans were <2 mm! They were also able to number each placenta for good, or so they are hoping. Based on the photo above, number 1 is on the bottom right, number 2 is in the center row on the right, baby 3 is to the left of baby 2, baby 4 is just below baby 3 and to the left of baby 1, and baby five is the cherry on top! All 5 have a distinct location, but have shifted a bit since the last ultrasound to provide themselves more room for growth. The ultrasound technician said that the placement of all of the placentas look great!

Cue “Eye in the Sky” by the Alan Parsons Project (a.k.a. the Chicago Bulls Intro Song)

And now all the way from Madison, Wisconsin, 12-weeks and 2.5 inches long the Vanderwall quintuplets!

When we were introduced to baby 1 at this visit, their little hand was right up to its ear, just like it was chatting on the phone. Our technician said it was probably calling the others to let them know Mom and Dad were watching :O) We deemed this one both our chatterbox and tattletale!

Baby 1
Baby 1

The next stop was to the three arranged in the middle. Starting from right to left: baby 2. It’s difficult to tell from the photo, but this one we think is going to be the tough cookie of the bunch. They had their fists raised just like a boxer and were kicking their legs like crazy. Little did we know, but those little legs were right up against baby 3’s placenta. We think we got to witness an epic battle of footsie!

Baby 2
Baby 2

Moving to the left, the monkey in the middle, baby number 3. This little one couldn’t sit still for a moment. They looked like they were break-dancing with an impressive worm.

Baby 3
Baby 3

On the far left, is baby number 4. Who appeared to be the most mild mannered of the bunch. They were chillaxin’ with their little legs propped up and ankles crossed. They moved a little, but looked quite content watching the others.

Baby 4
Baby 4

Baby number 5 was previously the baby they were most concerned about because they had nestled in near to the opening of the fallopian tube. They also were lagging a bit in growth last time we checked in. But, this time they scooted over a bit and have plenty of room to grow and they are tracking beautifully on growth. They are still the shortest of the bunch, but what they currently lack in length they make up for upstairs. The technician said this one had a beautiful brain! So, we’ve got a shorty with some smarty pants.

Baby 5
Baby 5

And those, folks, are the V-5! The next time we will get to see them is at 20 weeks! That is also when we will be able to assess their genders. So, please keep the prayers and positive thoughts flowing because these kiddo’s and their Mommy and Daddy have their eyes set on 34 weeks!

Eating for…Six

“Let food be thy medicine and medicine be thy food.”  -Hippocrates

Food-Is-Medicine

This is a statement I passionately believe in. Medicine is defined as “the science or practice of the diagnosis, treatment and prevention of disease,” and thus nutrition is also the science of the diagnosis, treatment and prevention of disease.

This is especially true when educating and counseling persons with chronic diseases, such as diabetes, high cholesterol, high blood pressure, kidney disease and the list goes on and on. Tweaks in what these persons eat on a daily basis can dramatically improve their disease state.

Many of you are probably waiting for the link to pregnancy, well here it comes. While I continue to believe in the power of nutrition, my view of food has shifted during pregnancy. I believe food during pregnancy is very similar to food for the elite athlete; it is its most basic form- fuel.

While dietary quality is of the utmost importance during both pregnancy and athletics, but quantity often is slightly more important. I have been intrigued by the amount of energy (Calories) required to grow and sustain life, let alone 2, 3, or 6 at one time.  The average adult woman needs approximately 1600 Calories per day and the average adult male needs nearly 2000 Calories per day. These amounts of course vary depending on an individual’s metabolism, body composition and daily physical activity. But, the average woman pregnant with one child needs approximately 300 additional Calories per day beginning in their 2nd trimester. However, this is not the case with multiples. This additional energy requirement starts in the 1st trimester and quickly escalates with each fetus:

  • Twins: 3,500 Calories
  • Triplets: 4,000 Calories
  • Quads: 4,500 Calories
  • Quintuplets: 5,000 Calories

One may be jumping for joy at this amount, because it’s like Thanksgiving everyday! Unfortunately, when you add in morning sickness, indigestion and limited belly capacity, this feat requires a bit of creativity.  Again, it is important to remember that quality is a close second to quantity and thus the type of Calories consumed is also very important.

The average dietary composition is 50-55% Carbohydrate, 25-30% Fat and 15-20% Protein. During pregnancy, this also shifts to approximately 40% Carbohydrate, 40% Fat and 20% Protein. Fat, primarily from unsaturated sources high in omega 3’s, like DHA, is critical for neurological development. Protein is known as the building block for life and food sources that maintain a complete amino acid profile, animal-based proteins, are ideal. The percentage of carbohydrates decreases during pregnancy, and my assumption for this decrease is two-fold: 1) To account for the increases in necessary fat and protein and 2) To limit edema, or swelling and bloating. Carbohydrates tend to pack on water has they are stored and extra L.B.’s from fluid tend to be unappreciated, especially later in pregnancy.

Overall, we know that nutrition is an individualized science and all of the energy goals have to be adapted to the individual. I believe the best outcome for measuring a person’s nutrition during pregnancy is maternal weight gain. Future mom’s of multiples are to gain an average of 2-2.5lbs per week beginning with week one, so that by 30 weeks mama has gained nearly 80lbs. Maternal weight gain is highly associated with fetal growth and gestational age, which we know are the two variables that often influence fetal complications.

So, for you “bump” lovers out there I will be sure to post a pic or two in the coming weeks along with some updated ultrasounds. Until then, hang tight…patience is a virtue (lol). And, for you nutrition geeks and foodies out there, much like myself, there will certainly be future posts on nutrition tips and meal planning for mom’s of multiples.

Five Buns in my oven

Written by: Cassie Vanderwall, MS RD CD CDE CPT

Woes and Wishes of the First Trimester

The first trimester poses something new with each week. The two-week wait presents great anticipation of finding out whether you have been part of the miracle of conception, as well as, the opportunity to strengthen your patience. In week three and four you begin to realize that your body is certainly not your own. As your blood volume begins to increase your heart rate, blood pressure and respiratory rate all tend to also increase, which left me exhausted and out of breath. It is amazing how nature has a way of slowing down even the busiest of all the bees. Then, come the GI (gastrointestinal or belly) woes. Bloating, indigestion and the beloved “morning” sickness all of which can be attributed to the hormones that are bouncing around like Flubber. My biggest woe has certainly been “morning” sickness, which for me has been 24/7 nausea.  I am very grateful that everything has stayed down, because we know every nutrient counts. I’d love to take a moment to share my tried and true tips for nausea.

The Do’s and Do Not’s of Morning Sickness

  • Do take 60-100mg of extra vitamin B6 everyday.
  • Do get your hands on ginger chews and ginger tea.
  • Do have your own stash of seltzer water and salty snacks on your person at all times…in your purse, car, desk, bag and table next to your bed.
  • Do get fresh air. For me, there was nothing like taking a walk around the block.
  • Do try a cold cloth on your forehead and back of neck.
  • Do stay hydrated with ice cold water.
  • Do purchase Seabands…they rock.
  • Don’t eat really fatty or smelly foods. The high fat foods take a long time to digest which delay transit time. Smelly foods (spicy foods, fish, etc) can trigger the nausea center in your brain, which usually doesn’t end well.
  • Don’t become constipated. If you can help to keep that train running you will prevent the intestinal traffic jam that can cause a nasty back-up. Focus on whole grains and fruits and vegetables that you can tolerate.
  • Don’t eat foods that don’t sound good. Food aversions are odd to me. Foods you love can quickly become foods that you cannot even think twice about. Don’t force it, save them for later because this too shall pass.
  • Don’t wait until you are hungry to eat. Establish a meal pattern, such as every 2-3 hours. An empty stomach is not your friend.

Alright, thank you for entertaining my list. Hopefully, some of you find it helpful. Onto a few more woes and wishes. During week 8, my nausea began to subside, which was scary for me because up until that point that’s how I knew I was not alone. My greatest fear at this point remains miscarriage. So, I am highly cognoscente of my signs and symptoms. This fear only escalated during week 9, this is a warning that if you’re grossed out by lady talk skip on to the next paragraph.  During week 9, I started spotting. It is really frightening to bleed during pregnancy, because I immediately think Aunt Flow has come for a visit and she doesn’t visit pregnant folks. I called my docs and they assured me that as long as it is not accompanied by cramping or back pain and does not increase in flow that everything is alright. I’ve heard a variety of reasons for bleeding during pregnancy, including:

  • Implantation
  • Placenta Formation and Attachment
  • Blood clots created during placenta formation
  • Bursting of blood vessels
  • Uterine growth and contractions

My plan is to keep a close eye on things and make a follow-up to ensure that everything is alright, so please be praying for this.

My greatest wish at this point is to make it to 32-34 weeks miscarriage free because I know at that point my babies have the best chance of a handicap free life.  I also hope and pray that I can create the ideal environment in my belly for their growth and development.

All of these woes and wishes, hit me pretty hard on the way to work yesterday. Then, I was blessed by a song on the radio; “I need you now, how many times” by Plumb. Amazing song and exactly what I needed to hear.  I hope it inspires you, too!

Written by: Cassie Vanderwall

The Announcement…explained.

Sharing the news that you are going to have a baby is an exciting opportunity; sharing the news that you are going to have five babies is seriously five times as exciting! We decided to share this news with our family and very close friends the day of our first ultrasound. We sat in the car after that quintessential moment and contemplated how we would share with each individual. Everyone was as lost for words as we were, and their support was also breath-taking. Since that day, the thoughts, kind words, prayers and support and have not ceased to bless us. My dad even lit individual candles for our five miracles, and my mom texts 7 hugs to us every night!

Five heartfelt prayers for five little miracles
Five heartfelt prayers for five little miracles

We welcome the opportunity to share this news with the world yesterday. It was a difficult decision to share this so early in the pregnancy (8 weeks). But, with risks being so high we know we are going to need all the prayers we can get!

More to come on our first visit with the perinatalologists…