Survivor Saturday: Meghan's Story

I'm sitting here with my foot in a bucket of ice water, having just completed 10 miles in honor of Meghan and her baby. I've had to switch to a less agressive training schedule after re-injuring my ankle. I'm confident I will finish Leading Ladies, but I may be a bit slower than I'd hoped. The ankle is improving, and I was able to do all of my run intervals today, which is a huge improvement over last week where I walked four of six miles.

If you are a survivor of Preeclampsia or a related condition, I would love to share your story and to run in your honor. Stories can be submitted to whatyourunningfor@gmail.com . The more women know about PE, the better they can advocate for themselves and their children.

Meghan shared her story with me this week. She is a fellow runner who had preeclampsia. She includes some great tips for pregnant women and PE survivors.

Meghan's Story

I am a runner. I have run one marathon and about a half dozen half marathons since I began running for the sake of running in 2004, right before my 30th birthday. I have run 80 miles a week before (plus road
biking and distance swimming), and when I became pregnant with my daughter, I was running about 40 miles a week, while also swimming 1-2 miles at a time and road biking. I was fit, but in a healthy way -
something that had not always been the case. I always felt it was not worth going for a run for less than 6-7 miles - until I was pregnant. Those 3-6 mile runs were exhausting but exhilarating at the same time
- I had never worked so hard to put one foot in front of the other, yet be going so slowly. The fact that my legs were carrying my daughter and me over those miles, with my belly growing, was beautiful to me - and probably a little concerning for the random person who drove by.

I started wearing maternity clothes just before 7 weeks gestation. I literally gained a pound a week from moment one. You could tell how many weeks gestation I was not by my uterine height, but by how many
pounds I had gained. At 18 weeks gestation, while climbing a flight of stairs at work, I started to have contractions - and not just Braxton Hicks contractions. My headache from first trimester also returned
(gosh, it must just be that hormone headache I thought), and as the weeks went on, I was gaining 4 or more pounds a day at work, and then I would lose it the next 3-4 days while at home, laying down. I had squigglies at the top of my vision while I was out running and sometimes while laying down, and my contractions were continuing and getting more constant. At 26 weeks gestation, while at work as a
Pediatric Nurse Practitioner in a Family Birthing Center, my contractions started to wrap around my body and lasted for 45 seconds every 2-3 minutes, so I called the OB on call. Instead of staying at
my hospital, I traveled to the hospital that I was going to deliver at, which in the end, was a mistake. My blood pressure there was 150s-160s/90s-100s after I had always been 90s/50s, and the
contractions showed up nicely on the monitor. After a few doses of tocolytics and me laying on my left side, the contractions slowed and my blood pressure came down (of course), so they sent me home to do a 24 hour urine. I dropped it off about 30 hours later after fighting with the lab to accept it because my providers had not given me an outpatient lab slip. Little did I know that this was going to be the
first of many mistakes.

Speed ahead 9 weeks: after 9 weeks of continual contracting and hypertension and headaches and visual disturbances and not getting anywhere with my complaints, I am seen by the Nurse Practitioner on an urgent visit for my visual changes getting worse. I have spent these last 9 weeks on self-imposed bedrest when I was not working my 24 hour shifts, because my contractions are unstoppable, I have dilated some, but no one will officially put me on bed rest. I am admitted to the hospital with pre-eclampsia. Turns out my 24 hour urine 9 weeks earlier, along with my hypertension and symptomology, have diagnosed me - and no one acted on any of this. I repeat a 24 hour urine and it is higher this time. I am finally officially placed on bed rest, but sent home. At this point, I am supposed to return if I feel sicker. Honestly, I think I felt sicker, but you are already so sick that your brain is not working (beyond the normal pregnancy brain issues). I am seen at my regular OB appointment 5 days later and am sent immediately to the hospital for induction for severe preeclampsia. The first induction fails, probably secondary to inaccurate Cervidil placement, and I am re-induced. My daughter is born on my 35th birthday after 51 hours of induction and eventual cesarean section secondary to cephalopelvic disproportion after two failed vacuum attempts. She had crowned at 1.5 hours of me pushing, but 3.5 hours after that, she was still only crowned and stuck on my coccyx. The OBs (there were three of them at this point, plus two residents) pushed her back up into my uterus in the surgical suite, thereby completely lacerating/rupturing my cervix and part of my lower uterine segment. She was born healthy despite two severe episodes of bradycardia during my epidural administration and reinforcement, which was the result of my hypotension and loss of consciousness.

She is now two years old, and has a gross motor delay and an expressive language delay, and is seen by Birth to 3, our early intervention program. She is smart and lively - with fine motor skills and receptive language skills being at or above average. Her speech is improving every day, but I waited until the month before her second birthday to hear the sweetest words - "mama." Her gross motor deficits are probably the result of low core tone, and we are also working to improve that.

I had postpartum preeclampsia, along with a host of other issues. I was on blood pressure medications for the year after delivery. I have labile blood pressures now, but am not on any medications. I began running again about 9 weeks after delivery - my first run was 2 miles and it felt great to be pushing that jogger. I was up to 7.5 miles at 7 months postpartum, but we had a horrible winter that I could not take the jogger out onto the road, and I did not make it to the gym, so I lost that fitness over the winter. That next spring I was up to 5.5 miles within a month of running again, and then had a subchondral fracture of my ankle, so I had to take 6 months off running and walking and could not get out with a bike due to my husband's schedule. In more fits and starts, vaccine-not-covered influenza took its toll on me this winter when we finally got a treadmill, but I am now back at it with renewed committment. I am still a runner, even if I am barely getting in three miles a run a couple of times a week. Now, more than ever, any amount of running is worth it.

Pieces of advice for all pregnant women:

1) your spot-check urine does not have to have any protein on it for you to be preeclamptic - I was always negative because I hydrated myself so well and my kidneys just put all that back out there - the 24 hour urine is usually the gold standard, although some studies show a creatinine clearance ratio can be accurate.

2) your blood pressure is not accurate laying on your left side, with a cuff too big for you, with a person not carefully taking it - I never had hypertension in my OBs office unless the Nurse Practitioner or MD took it, but always had it at the hospital when I arrived for my contractions becoming intolerable (and my fetal fibronectin expiring) and I always had it at home.

3) don't be afraid to fire your OB - I wish I had when I miscarried prior to the preeclamptic pregnancy, and had a tech come in and ask when my last period was, what I was using for birth control etc, when I was there as a post-miscarriage appointment. After my delivery, and finding out when I requested my records about all the mistakes made, I did fire my OB.

4) don't be afraid to demand a second opinion with a Maternal Fetal Medicine specialist/Perinatologist - I wish I had, but I listened to the reassurance provided by my providers and did not go with my gut
feeling.

5) don't take any lip from the L&D nurses - I would rather be a "frequent flyer" than die or have my baby die.

6) educate yourself.

Pieces of advice for preeclampsia survivors:

1) see a MFM/Perinatologist after your pregnancy and before another pregnancy - make sure you have a plan of care for the subsequent pregnancy

2) know your risk factors for future health issues and modify as many of them as you can

3) grieve what you have lost

4) look to the future

5) educate your son and daughter for their futures

6) talk about this so more women are aware

If I had a chance to do it all over again, I would be much more pushy to my providers, and I would tell my husband to do the same. I knew what preeclampsia was. I knew I had it. I expressed this to my
providers, but I was not able to be a great advocate for myself because I was already too sick and figured my providers knew better than I did. As a result of my early preeclampsia, my husband and I
were very fearful of having another pregnancy, but were going to go ahead and have another with some very close medical care. As a result of my cervical injury and my investigation into my now incompetent cervix, I found AbbyLoopers and its experts on transabdominal cervical cerclage. Although it is an option for me, combined with another type of cerclage during pregnancy, my husband and I feel that, combined with the early preeclampsia, my cervical injury and the plan for a subsequent pregnancy, it is too risky for us, so we have decided to not have another child. Today, 26 months after the birth of my daughter, I still cry about this. I do cherish what I have with her and try not to let worry and fear and anger overcome all that I have.

Nine Weeks to Race Day

I finished a brutal 16 miles this morning. I was a lot slower than usual, and my muscles were threatening major cramps toward the end, but I finished without skipping a run interval. I did not receive a submission for today's Survivor Saturday. I still had a mother and children in mind, but I hesitate to share too many details without her permission. (We are no longer in touch.)

J lost her first son to PE at 22 weeks around the same time I was diagnosed with my twins, also at 22 weeks. We both found the amazing forums at the Preeclampsia Foundation. A few months later, she was pregnant with her second. We encouraged, supported, and prayed for each other through those long, stressful months. J had a beautiful, living son at 36 weeks with only mild PE. I cried when I read her birth announcement. A new pregnancy after previous complications and especially after a loss can be so stressful. Sharing it with women who understand helps a lot.

Still Looking for Survivor Stories

I've used all the stories submitted to me so far. I've had three people mention they had stories for me but haven't gotten around to writing them yet. I'd like to get enough to have one each Saturday until race day, so that's nine more. I dedicate my long run in honor of the featured mother and baby(ies) each week.

If your life has been affected by preeclampsia or related conditions, I would like to share your story. It's so important for pregnant women to know about the risks, the signs and symptoms, and what to expect. Stories can be submitted to whatyourunningfor@gmail.com. You can find other Survivor Stories here.

I need this shirt...

...while training for the Disney Goofy Challenge in January!

Not a real shirt design...yet

Survivor Saturday: Jamie's Story

I'm a day late posting this, but I did run 8 miles in honor of Jamie and her children yesterday. Jamie's story shows how important it is to trust our instincts, and that high risk pregnancies should be handled by specialists. (I have a post planned for this week exploring that issue further.)

Jamie's Story

After about 1 ½ years of marriage my husband and I decided we were ready to have a baby.  We were pregnant in no time and aside from the nausea and constant vomiting, I had a perfectly normal pregnancy until about 37 weeks.  I thought I was going into labor and so I headed to labor and delivery to be checked out.  I was not in labor, but my blood pressure was so high so I was kept overnight.  I was sent home the next day on bedrest but went into labor that night and delivered a healthy 6 lb, 9 oz baby girl.  We named her Carly.  I was on the dreaded magnesium drip for 12 hours and then they turned it off.  I was sent home without any instructions regarding what could happen after delivery... or that this same scenario could repeat itself in my next pregnancy.

Fast forward about 2 ½ years and we decided we were ready to give Carly a sibling.  After a year of trying we were finally pregnant again.  We live in a very small town and it is common here for people to use their family practice doctor as their OB.  Since things had gone ok the first time I had no reason to believe things wouldn’t go the same way the second time.  So off I went, back to my family practice doctor.  Things were fairly routine again up until about 23 weeks.  I was at work and started having contractions.  I was very unconcerned at first and decided I just needed to drink some water and rest.  I did but the contractions did not stop.  I am an RN and worked at a hospital in a larger town about an hour away.  It is important that I am a nurse because even with that education and experience I had no idea what could happen.  I think we spent less than 30 minutes covering PE in nursing school and I worked in adult ICU and so we never deal with the women’s health side.  In hindsight, I so wish I would have gone to labor and delivery where I worked instead of driving the hour home to go to the smaller hospital. 

Oh hindsight is so very 20/20.  Anyway, I drove home and went to L&D.  At that time they did a fetal fibronectin test and noticed my pressures were a bit elevated.  I was not seen by my doctor that day because he was not on call.  The on call told me to go home on bedrest until the following Monday and then to follow up with my doctor for the test results.  I did just as I was told.  When I got to that appointment, my blood pressure was 140/90 so I was sent over to the hospital for an NST and then told to start a 24 hour urine when I got home.  When I got to the hospital my blood pressure just kept going up.  I think it was 160/110 at its highest.  I was admitted.  I was 24 weeks at that time.  Luckily, my blood pressure stabilized but I was told that my baby and I were both sick and that I would likely be Care Flighted to a larger facility with a NICU.  Instead, because my pressure had not spiked again on bedrest, I was sent home with a PE diagnosis and told to stay on strict bedrest. 

I was scheduled for twice weekly NSTs and office visits.  Each time I would go in for an NST my pressure would be sky high again, usually I’d be admitted and then sent home the next day.  I think this repeated itself and then on the 5th admission I was told I would not be leaving until I delivered- whenever that would be.  I was somewhere between 31-32 weeks.  I developed gestational diabetes as well during this pregnancy and was taking insulin three times a day- the diabetes turned out to be a blessing later on because it had helped the baby to grow bigger than she otherwise would have been.  I had daily NSTs, daily urine dips, weekly 24 hour urines, weekly growth scans, and weekly biophysical profiles.  I kept asking to please be delivered but the doctor kept telling me the baby was “just too small.”  Looking back and now having more understanding- being so small was every reason I should have been delivered. 

Anyway, at 38 weeks, after 7 weeks of being in the hospital, the doctor finally agreed to deliver me IF an amnio proved the baby’s lungs were mature.  That decision was made on a Saturday and the amnio was to be done on the following Monday.  Monday morning came and they went to do the amnio and found that the baby’s fluid was virtually non-existent.  They did not do the amnio and instead my induction was started 15 minutes later.  I still believe that amnio saved my daughter’s life because if there had not been an amnio which showed the low fluid then my next ultrasound would not have been until Friday which I fear may have been too late.  My labor was short and within about 3 hours I delivered a tiny 5 lb 15 oz baby girl. 

We named her Anna.  She had a very weak cry and a very thin cord but otherwise she seemed fine.  I was started on a mag drip again and so the next 24 hours are very fuzzy.  I do remember her having some grunting but was told over and over that she was fine.  We were discharged home 2 days later and again I was not given any information about what could happen in the post partum period.  Luckily during this pregnancy I found the Preeclampsia Foundation and so I knew.  My blood pressure got far worse in the 6 weeks after birth than they ever were during the pregnancy.  I was trialed on many medicines and I remain on lisinopril to this day.  My blood pressure has not ever gone back to normal.

Due to my bedrest and not being able to work plus the mounting medical bills, we were financially devastated.  Aside from trying to dig out from under that debt I thought the PE nightmare was over.  Anna stayed very small and would not eat much.  Even at about 3 months she was only taking 2 ounces of formula at a time.  She vomited a lot also.  The same doctor who had delivered her and who was our family doctor finally grew concerned enough that he sent us to pediatric GI specialist.  We expected to go and be told we needed to concentrate her formula more and get something for her horrible projectile vomiting and reflux.  My husband and I loaded Anna up and headed off to the appointment.  We stopped and had lunch and the mood was so light.  We finally got in to see the doctor and at that moment our lives were forever changed.  He told us that he believed she had milk allergy and reflux and yes, she was tiny, but that he felt we had a much bigger problem.  He felt like she had a neurological problem, likely cerebral palsy, and that we needed to get in to see a neurologist as soon as possible. 

We left that appointment and drove home in complete silence.  It took about a month to get in with the neurologist who confirmed the diagnosis.  They feel her brain injury was suffered in utero from a lack of oxygen caused by a failing placenta.  Her asymmetrical IUGR was proof of that.  We immediately got her started in therapy and since that time have been to hell and back.  She has had to endure countless specialists, appointments, a feeding tube, seizures, leg braces, medications…  You name it and we’ve probably done it.  She is an amazing child though and to look at her you would never know what all she has been through.  The thing that is so hard is that her brain injury was preventable.  Had my doctor not been so arrogant in thinking he could handle our case, her brain likely would have been spared.  We should have been sent to an MFM or an OB at the very least.  I have since found forgiveness for that doctor because the anger was making me crazy.  I did not forgive for his sake, but for the sake of myself and my family.  I firmly believe he did the best he knew how to do but sometimes doctors should admit they are in over their heads and ask for help.  It wasn’t until I obtained all of our hospital records that I really realized how differently things should have gone.

Fast forward 3 more years and I became unexpectedly pregnant again.  I found the best OB around who specializes in high risk pregnancies.  He knew from the start that this pregnancy was going to be a balancing act and he was prepared for the job.  He also understood how emotional this 9 months was going to be.  I started bedrest at 20 weeks.  I was on medication from the start and it was changed a few times.  I had no idea how hard a pregnancy would be following a pregnancy that had gone wrong.  The emotional toll was indescribable.  But we made it successfully to 34 weeks when my pressures became unmanageable and I was induced.  I delivered a 5 lb 13 oz little boy named Gabriel “Gabe”.  He spent 18 days in the NICU before coming home.  He is thriving and has healed a lot of the wounds that were so deep after my last pregnancy.  For me, it was far easier to have a baby in the NICU that I knew was doing ok than to carry one inside of me that I could not see.  I spent every day up until that day of delivery wondering if this baby’s brain would be ok and there was no test that could tell me the answer.

I was advised to never get pregnant again.  I will listen to the doctors.  I have learned to trust doctors again, but I have also learned to trust myself.  I have learned to go with my gut instinct- the one that kept saying “get Anna delivered”, the one that I ignored.  It has been a long road but one that has made me a better person.  For us, the PE nightmare will never be over because the damage done to Anna’s brain cannot be undone.  But we will go on and we will do our part to make sure this never happens to anyone else.  All of my children are alive and so am I and because of that we are some of the lucky ones.

Bra Review II: Enell

I'm sure you've been waiting with bated breath! Here is Bra Review Number Two: The Enell Bra. This was actually my first quality sports bra. Its claim to fame is being "Oprah's favorite sports bra". Since Oprah is a pretty curvy woman herself, it has to be good, right? Let's start with pros.

This is a monster of a bra. It is very durable. I've had one for over four years, and though it is a bit discolored, there's no other sign of wear. It will last practically forever.

This bra distributes the weight of the breasts across your whole back with a comfortable, wide back panel. The straps are wide and lightly padded, so no cutting into the shoulders. It's a fantastic compression bra, so there is no bounce. This is a very comfortable, supportive bra IF it fits you well.

And that brings us to the first con. It does not come in exact sizes; it comes in size ranges. It's basically a high quality small/medium/large type bra for curvy ladies. If you're between sizes, you're out of luck. Also, it clasps in the front with just one row of clasps. If you (like me) are the type to gain and lose the same five pounds over and over, you can't just move to a tighter or looser setting. The straps aren't adjustable, either, so if you're shorter or taller than average, you can't get a custom fit. I'm short, and I would prefer the straps to be just a bit shorter to really fit me well.

Now, the company does make custom bras. It costs an extra $15 for the first one, and once they have your pattern, it's an extra $7.50 for each additional bra.

The second big con for me is, again, it's a monster of a bra. It's very thick with no mesh parts. This makes it hot. I'm very heat sensitive when I run, as much as 2 min/mile slower in summer vs. winter. This is not my bra of choice for an outdoor long run if the weather is warmer than 30F/0C. I'm not kidding--my first winter of training, I often ran in a t-shirt with no gloves in 30-40F/0-4C weather with the Enell. (However, it was quite nice this past January the day I did 16 miles in 9F/-12C on snow and ice, but that's not typical weather most of the year.) Of course, since it's going to last forever, I'm not letting it go to waste. This has become my go-to bra when I run on the treadmill in the privacy of my home with no shirt and a fan pointed on me at all times.

So a mixed opinion. If it fits you well (or you're willing to pay the money for a custom bra) AND you don't mind the heat, it's a very comfortable bra that will last forever. But if it doesn't fit well and/or you're heat sensitive, look elsewhere. It gets a C- from me.

Note: I received no compensation for this review. This is just my opinion.

Survivor Saturday: Sima's Story

I had the privilege of running 14 miles in honor of Sima and her children this morning. This story takes us from the tragedy of losing a child to the triumph of a successful second pregnancy. It also highlights a woman taking charge of her health and actively improving her risk status.

Sima's Story

I just wanted to share my story to give hope to those who've lost a child to PE and are on their 2nd pregnancies. I lost my son seven years ago due to severe PE. He was born sleeping at just 500g (Severe IUGR) at 23weeks! My protein level if I remember correctly was 3++ and my BP was reading 190/95 or so. Having no knowledge of this condition, we were completely shocked and heart broken, the most traumatic incident to have happened to me and my husband.

After that we were so put off that we decided not to get pregnant for a while. I was on BP meds for at least a month after the delivery. The initial diagnosis was that I was obese and should lose the excess weight before going for a 2nd pregnancy. We decided then that we would just enjoy life and forget about having children for a while.

After a couple of years (still obese) one day I experienced severe headache. I went to my doctor, and she found that my BP was elevated 150/90, gave me some meds to get it down, and asked me to go home and rest. In the middle of the night I found my heart to be beating extremely fast. My husband and I decided to go in, and I was admitted. They performed an ECG / blood tests / 24 hr urine tests and found absolutely nothing. I was kept in for observation for a couple of days and was then told, as I was still young in my early 30's, that meds were not the right way to go, and that I must lose weight. I was then referred to a dietitian.

At the same time, I was asked to go in for an ultrasound of the kidneys just for reference. This is when we found out the 2nd shocking news that one of my kidneys was extremely small in size. No one could say if it was congenital or if it happened over a period of time. In any case, I was told by the doctor to definitely consider losing weight.

I lost around 18 kgs in a span of a year or so with lots of exercise and just a good diet. After that, we found that my BP levels had become normal. I was advised to have the small kidney removed if I could, as it was only functioning at 2% capacity. I had a laparoscopy to have that kidney removed.

We then consulted with the MFM to check to see whether we could try to get pregnant and were advised that all should be OK, and that I would be on LDA (low-dose aspirin) from as soon as the pregnancy is confirmed up to 34 weeks. I was advised conceiving with a single kidney was not a problem, either. While trying to get pregnant, I maintained a healthy diet and also worked out regularly.

And finally last year I became pregnant once again. I was very closely monitored by a good MFM throughout my pregnancy i.e. regular ultrasounds / doppler scans etc. There were no signs of any protein throughout the pregnancy, my BP level remained pretty steady i.e. within acceptable levels up until 24 weeks. Thereafter there was a slight increase, however more so due to anxiety and in some cases perhaps what is described as "white coat hypertension". The BP machine would beep whenever I was at the doctor's but absolutely fine when at home. I was asked to closely monitor my BP at home as well.

The anxiety levels were so high that my doctor asked me to find a means to relax and just think positive, as the pregnancy was going very smoothly. I did have quite a few braxton hicks plus a lot of acidity. I was also experiencing severe shoulder / arm aches on both sides during nights, which did cause a lot of nervousness, but after doctor's assurances that there was no way it would be what they call an epigastric pain, we relaxed a bit. Anything little that happened triggered us off, as the first time PE struck, it was very sudden with extremely high BP and proteinuria. I also had repeated UTI's but was told it was normal. The 1st time around the water retention in my feet was severe, this time around I was amazed to see that I could fit into my normal shoes. 

I was asked to get myself admitted immediately if my home BP readings were anything higher than 140/90 and also if I experienced blurred vision or extreme water retention. During my pregnancy I was also doing yoga, though only up until week 16 as that's when my braxton hicks became quite painful so I was asked to stop. My pregnancy as per the doctors was basically pretty much uneventful (phewwww).

I was asked to come into the hospital on the first sign of labor pains. Come week 40 I was still hanging around waiting for the contractions. Since I was considered high risk, the doctors admitted me when I was 40 weeks 2 days. I was still not yet dilated and my cervix didn't seem ready at all even for an induction, so I opted for a C-section. I gave birth to a healthy baby girl at 40 weeks 4 days.

Words cannot describe our happiness! All the anxiety / nervousness etc. was worth it, as in the end we were blessed with a little bundle of joy. Though we waited over 6 years to conceive, it was well worth it. I believe my lifestyle change i.e. diet / exercise & weight loss also played a big part, though I firmly believe that obesity was NOT the cause of PE. In my case it was probably renal related as I had one small, improperly functioning kidney which was also the cause of repeated UTI's.

There is hope, ladies. We are now considering another baby, but the doctor thinks it's perhaps too risky as my bp levels after pregnancy have been slightly elevated, but then again only at the doctors. At home it's always fine. I have been asked to start taking hypertensives, but I think the better option would be to exercise and get back into shape as I did the last time, as it did help with my BP.