Baby Theo

Theo is quite possibly, in our unbiased opinion, the cutest little infant baby-boy in the history of the world. It’s amazing how at just 31 weeks of age he is already showing quite a personality. It’s also amazing how much of a prototypical boy he can be at times. Here is a snapshot of  sweet little Theodore Joseph who has more than stolen mommy and daddy’s hearts. (If you click on an image, it will give you a full-screen slideshow of all the pictures).

 

Not pictured above:

  • In an unprecedented incident, during the night, Theo escaped out of his little bed, pulled himself across his isolette, and positioned himself right in front of one of the entry portholes. Apparently, he thinks he’s ready to go home :-)
  • We were photographing Theo and he felt the session was running a bit long. We kid you not, he looked right into the camera, conjured up an epic scowl for his little face, and then flipped us the bird. The picture was too obscene for this blog, but it was all captured in high-definition. We’re quite positive it will resurface in the years to come, accompanied by much laughter.
  • When Dad finally decided to jump in for one of Theo’s diaper changings, Theo made sure it was an unforgettable experience – if you catch our drift, literally :-) Welcome to fatherhood!

We hope you have enjoyed the pics and stories of our precious little Theo.

Please pray for his continued health, well being, and many smiles and blessings to come.

Stay tuned for photo galleries of all Theo’s little sisters!

Who Loves Cute Pictures of Little Quintuplet Babies?!

Over the next week, we will be starting a “Meet the Quints” series on our blog! Each post will feature one of our little cuties with lots of pictures and commentary. As we referenced in our previous somber-toned post The Quint’s First Two Weeks there have been many moments of pure joy in addition to the bumps in the road we’ve experienced thus far. These upcoming posts are our chance to share those joyful moments with you!

One last thing to prep you for the next five posts. The V5 are collectively in the best health they have been since birth. Still, they are hooked up to all kinds of Medical Miracle Machines (technical term) that are helping them to develop and grow into normal healthy babies. To help quell any concerns about their condition when we post wire-laden photos, below is a brief visual introduction into the anatomy of a typical NICU infant. Mr. Theodore Joseph has been selected to help enlighten you on the purpose of the lines and tubes you’ll see in the upcoming week’s pictures:

Anatomy of a NICU Baby, featuring Theodore Joseph
Anatomy of a NICU Baby, featuring Theodore Joseph

A: Free Baby Oxygen Bar/Spa Treatment – AKA: Nasal Cannula used to provide a variety of respiratory therapies

B: Hands-Free Food and Beverage Dispenser – AKA: Oral-Gastric (OG) tube used to provide breast milk and to check their bellies for residuals from prior feedings. It also can help to remove excess air from their tummies.

C: Personal Fitness Monitors (e.g. Nike+) – AKA:  All of these wires are leads which are connected to a monitor which help to assess heart and respiratory rates.

D: Remote Thermostat Adjuster – AKA: The wire tucked under the heart sticker is a temperature probe which helps to identify the baby’s temperature and keep it in an ideal range.

E: Belly-Button Jewelry Clip – AKA: this is a clamp placed on the umbilical cords and is later removed.

F: Oxygen Bar/Spa Treatment Membership Card – AKA: This is a pulse oximeter which is used to assess and monitor the baby’s oxygen saturation.

Zero to Quints

quintuplets31n-3-web

I believe further explanation of how we went from “status quo” to “the babies will be delivered within the next 45 minutes” is warranted.  I was settling in for a day’s work on the morning of July 31st, when I felt like I wet my pants. Now to be honest, I just assumed little Theo was going to be controlling my bladder for the day. But, upon further investigation, I realized he had popped his little sac and I had “broken my water.” I called my doctor’s office, but since they were closed it directed my call to the physician on-call, which just so happened to be Dr. Elliott’s “bat phone.” I felt awful for bothering him on vacation, but he didn’t mind one bit. He encouraged me to pack a bag and head to Ob triage (the moms’ ER).

We arrived at the hospital and were quickly shuffled in for an assessment. They tested the fluid and confirmed that indeed it was amniotic fluid. Then, they discontinued my nifedipine (calcium-channel blocker), gave me a steroid shot (Betamethasone) to enhance fetal lung development, and started me on 3g of Magnesium sulfate. I was then whisked away to ultrasound to confirm the culprit. It was indeed little Theo (baby A) whose deepest vertical pocket went from around 5cm to about 1.6 cm, which indicated that he only had about 1.6 cm of fluid surrounding his little body in his sac. His head was now so low in my pelvis he appeared as though his little body stopped at his neck.

The nurses assured me that once my contractions stopped, it was entirely possible I could remain pregnant for several weeks. This amazed me but they said it happens all of the time. Unfortunately, this scenario is only true if 1) your contractions do stop, 2) you tolerate the medicinal anti-contraction regimen and 3) you do not develop an infection. My contractions did stop, thanks to the “mag.” But, it was clear after 24h on the magnesium sulfate that I was not tolerating it, and my lungs began to fill with fluid.

Magnesium sulfate is used for contraction management. It is thought to affect calcium channels to slow uterine contractions. Typical side-effects include water retention, muscle weakness, sweating/flushing, nausea, vomiting, constipation, and blurry vision. For most, these symptoms are tolerable and some mom’s of multiples can again remain on magnesium sulfate for several weeks, in order to prolong their gestation. Unfortunately, I hit the jackpot and experienced all of the symptoms noted above.

My body was only able to combat these side effects for about 3 days. I was placed on b-pap to increase my oxygen saturation and Lasix to try and rid my body and lungs of the extra fluid.  On the morning of August 3, I was moved back to labor and delivery due to my pending diagnosis of pneumonia. When I spiked a fever and my white blood cell count shot up, we knew today was the day. It was then that we got the news that we would get to meet the quints within the next few hours.

They informed us that Dr. Elliott was speeding to the hospital, on his way back from vacation, and we were going to try and wait for him to arrive around 4pm. But, when he heard that I had a fever, he gave the go ahead to deliver in his absence.

A moment to smile before delivery.
A moment to smile before delivery.

Thus, they unraveled the most well-orchestrated delivery I have every heard of. With over 20 people in the delivery room (6 teams: one for me and one for each baby), they delivered the quints in about 3 minutes. The entire “operation” took about 45 minutes. I vaguely remember these moments, but Frank was right by my side to catalog it all.

Following delivery, Frank headed to the quints’ recovery room. By the time I arrived, all were gone and up to the NICU. My mom awaited me in the recovery room, and was over-joyed to see me safe and sound. I, unfortunately, could not see our little angels until my fever subsided and my breathing had stabilized.

Frank is ready to be a Daddy!
Frank is ready to be a Daddy!

Dr. Elliott arrived and it was clear he was upset that he could not deliver our babies, but we truly respected his decision. He shared with Frank that sometimes as a physician you have to make a decision with your head and not your heart. If we had waited even a moment longer my infection may have complicated the babies course.

Those 48 hours preceding the birth of our babies, were some of the worst of my life. But, I know that without that treatment regimen, our 5 little miracles would not have passed the “steroid efficacy window” and may have been at an even greater risk for serious complications.

Our heartfelt thanks goes out to Dr. Elliott and the teams at Banner Desert for their superb, patient-centered care, compassion and wisdom. For I know that if we were anywhere else, the circumstances and outcome may have been very different.

We have much more to share with everyone and are working on getting some fantastic pics of the quints, so look forward to some more baby updates in the near future!

Lucky Number 7

Theo the masked man
Theo the masked man

Friday we surpassed yet another milestone! The babies have been cooking for 7 months, which means we are now above the average gestational age for quintuplets. All of the babies were measured on Friday and they are all measuring within a day or two of the recommended size for babies at this point in pregnancy.

The picture below is a cool diagram that my sonographer drafted for us, which depicts where each of the babies are located in my belly, along with their current weights and percentiles.

28wk_Diagram

The weight of each baby is estimated based on the length of the baby’s humerus (bone in upper arm) and femur (bone in upper leg), the circumference of their abdomen and their head circumference.

Baby B's Abdomen and Kidneys
Baby B’s Abdomen and Kidneys

The biggest one in the bunch is Baby B at 2lbs and 12oz at the 62nd percentile. Little Elle Rose (Baby E) is the munchkin, but not by much as baby D and Theo (baby A) are also the same weight (2 ½ lbs) but just a bit longer. At this rate, when the baby’s are measured again at 32 weeks they will be about 1lb heavier each. Let’s just hope this Mama can keep up!

Baby C's Brain
Baby C’s Brain
Theo's Heart
Theo’s Heart

All of their organs (kidneys, bladders, hearts, brains, stomachs) look great and are also appropriate sizes. The blood flow to Elle has improved and has stabilized.  All heart rates remain within normal limits, and are often on the higher side, which is probably because they just can’t sit still.  We are truly excited to meet our little wiggle worms!

Baby D
Baby D
Elle Rose
Elle Rose

I am also doing well. It seems I am stretching by the day, but my body is adapting.  Pregnancy is definitely a physical challenge, but the emotional, mental and spiritual journey that accompanies gestation is truly a blessing!

28weeks_belly3

Fuzzy Wuzzy was a Baby

Thank you for everyone’s prayers for Baby E, Elle Rose, because God is answering every one of them. At today’s appointment we found out that her Doppler readings from her umbilical cord were in the normal range, with only one reading just above normal! She is our little fighter. I also shared with Dr. Elliott that we name little Elliott (Elle) Rose after him and I think I saw tears well up in his eyes. I love the heartfelt compassion of my doctor!

Baby E_Dopple

Additionally, at today’s visit we got to see almost everyone’s little face, and most of them have what looks to be a full head of hair! The sonographer asked me if I was having heart burn and nausea and I answered with a resounding yes! She said it is most likely due to the amount of hair on their little heads, because the hair protein can irritate the GI tract. Theo and Elle have the most hair and the rest are little fuzz balls at this point. I’ll let you see for yourself!

Chubby Cheeked Theo
Chubby Cheeked Theo
Baby C
Baby C
Baby C's Profile
Baby C’s Profile
Elle Rose
Elle Rose- I think she’s smiling!
Elle Rose's Profile
Elle Rose’s Profile

Baby B & D didn’t want to come out to play at the photo shoot, so unfortunately we don’t have any images of those two little ladies.  But, from what we saw today everyone remains on track with healthy hearts, brains, organs and blood flow.

My doctor also gave me a warning that this is the point where growth really picks up.  Amazingly, all of the babies have shifted to a transverse position with their heads to my left and little feet to the right.  Theo still has his little noggin tucked into my pelvis but his feet swing left. So, they are in ideal positions to bulk up…which of course Mama is going to need to find some XXXL shirts pretty soon! Muumuu’s here I come!

Again, thank you to everyone for your prayers! We appreciated every single one of them. We also want to send a special thanks to our friends at Culver’s who threw us a baby shower. Now our little ones can sport their little Culver’s onesies on their way home!

One Happy & Thankful Daddy!
One Happy & Thankful Daddy!

We are simply overwhelmed by everyone’s generosity and support. Please know we could not do this without you!

Happy 3rd Trimester!

We have reached yet another milestone in this pregnancy! In just a few days we begin our 3rd trimester!

I did thisAlthough the third trimester often brings aches, pains, and discomfort from gaining half of your original body weight it also brings the joy of knowing that- for me- in 9 weeks or less, I will be holding each of these beautiful miracles!

24 weeks, or 6 months, is a critical milestone because it is the point in the pregnancy where doctors will consider your pregnancy viable, or in other words if you give birth after 24 weeks your doctor’s will help to save your babies. Therefore, from this point on the babies are coming, it’s just a matter of when.

The average gestation for quintuplets is 26-27 weeks, which for me would be in 1-2 weeks. However, my current perinatologist’s average for quint pregnancies is 33 weeks and 1 day, and of course my personal goal is 34 weeks! When it comes to high order multiples average just isn’t good enough.

So, how does this compare to a singleton pregnancy if we make it to 34 weeks? Well, being born at 34 weeks for 5 babies is about the same as being born at 30 weeks for 1 baby. According to all of the statistics, the risk of brain bleeds, respiratory distress, cerebral palsy, etc. all plummet at 28 weeks (you can read more about this in my previous post, entitled Visit to the High Risk Clinic).

Our outlook is pretty good. At my last doctor’s visit on Tuesday, I was informed that I might be able to stay out of the hospital for another 3-4 weeks. This was music to my ears because:

  1. Most make it another 4+ weeks after admission to the hospital before giving birth.
  2. Our pregnancy is stable enough for me to continue to enjoy the perks of living in a home.
  3. Hospital food doesn’t even come close to my mom’s delicious and nutritious cooking!

We also learned at our previous visit that all of the babies are growing at a similar rate now; they are all between the 60th-70th percentiles. My side of the family is known for making big babies, so we’ll see how this plays out. The only difference was that Baby B’s legs were much, much longer than everyone else’s. It looks like she takes after her Daddy and will be the speedy queen of the bunch. We also learned that everyone’s hearts, brains, kidneys and circulation look great!

The only concern from the visit was that Baby E’s umbilical cord did not insert centrally into her placenta, which is correlated with causing distress later in pregnancy. Right now, baby E is as playful as the rest, so my prayer is that her circulation stays strong. She has been the doctor’s concern since day one, so I know she is going to be our little fighter.

Baby E has got her dukes up!
Baby E has got her dukes up!

Now, for those that have bared with me to the end of yet another lengthy post, I plan to present to you the names of our five little miracles…with a bit of explanation of course in the next post!

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 Story of Theo and the 4 Princesses

BABY_C2

As I lay on the ultrasound table this afternoon I watched the story of Theo and the four princesses unfold.The sonographers took just over 30 minutes on each baby to specifically measure and examine:

  • The spine
  • The heart, including all 4 chambers, the aortic arch and the heart rate
  • The brain and specific parts including the cerebellum
  • Nuchal fold
  • Kidneys and the blood flow through the renal arteries
  • The umbilical cord and placenta
  • Fluid within each placenta
  • Boy and Girl parts
  • Head circumference
  • Facial features (eyes, nose, lips)
  • Both arms with open hands
  • Both legs and feet

As you can see it was truly a marathon of measurements. But, three hours later we now know that we have very healthy babies. Everyone’s organs look great at this point and have great blood flow. All of the nuchal folds were less than 6 mm, which means they are all at a very low risk for genetic disorders, including downs syndrome. Everyone has 10 fingers and 10 toes and the cutest little noses!  Also, all of the babies’ measurements are within normal limits. We have two babies at the 70th percentile, meaning they are measuring bigger than one baby would at this time. The remaining three babies are at the 30th percentile.

We also got confirmation that we will be having four girls and one little boy. We have decided to name our little guy Theodore Joseph, or Theo for short. He may eventually come to enjoy the name TJ, too!  As for our little ladies, we are still tossing names around but definitely have a few that we like.

I commend all of the sonographers for their work because we certainly have a bunch of wiggle worms. However, everyone did give us a beautiful profile shot and a quick glance at their faces.

Baby D
Baby D
Baby E
Baby E

Even little Theo decided to show us his face, which up until this point he would only reveal his boy parts.

BABY A

The only baby who stayed in the same position was baby E, who is at the very top. She may be quite the diver some day because she assumed the Pike position and didn’t switch. Baby C was tucked in a little ball and was quite the rascal. The rest were rolling about the entire time. I was happy to see everyone moving and grooving.  I wish I could share all of the images from today with you but unfortunately I got a faulty disc. All of the images within this post are from our 19-week ultrasound.

So, all in all we are doing very well! We are quickly approaching 22 weeks this Friday and then it’s just 3 more months to make it to our goal of 34 weeks!

Greetings from Arizona

Superstition Mountain

All is well in Arizona!

21 weeks

Today we celebrate 21 weeks, which may have not been possible without this venture to the desert.

My mom came to visit this week and it has been amazing to have her here. She has cleaned, cooked, and cleaned some more. It will be hard to say goodbye tomorrow, but I just have to remember that it’s really, see you later.

The home where I am staying is truly an oasis with a beautiful view from the patio.  Since there is not much to share in terms of updates, I thought I would share the scenery.

One tall cactus
One tall cactus
Cactus in front of Superstition Mountain
Cactus in front of Superstition Mountain

There is a lot more wildlife than I thought there would be. The birds are constantly chirping. I am greeted each morning by a pair of lovely doves. I even found a family of quail- mommy, daddy and several babies.  After meeting those little guys I was happy to see the vulture fly away. There are also the little lizards scampering to and fro and the coyote who takes his walk of shame down the road every morn.  I am truly surrounded by God’s handiwork, which is yet another blessing.

Mr. Morning Dove
Mr. Morning Dove

We will be having our 5-hour, 2nd trimester scan next week- woo hoo! I hear it’s a marathon with snack breaks and all! So, I will definintely have more to share about the V-5 next week. Stay tuned!

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!