Tag Archives: health

A Breastfeeding Story: Breastfeeding through Infant Botulism

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By Corby Selzer

theo 6 months

Theo at 6 months before infant botulism

Five years (accumulative) of nursing and many years of counseling women on a variety
of breastfeeding challenges could not have prepared me for two words..infant
botulism.

After two girls, I became giddy with excitement as our third child’s birth revealed
that indeed our last child would be a boy. A boy spun from pure sugar, and chubby as
chubby could be. My third nursling and fastest grower was known for his robust rolls
and “healthy” appearance.

At 7 months on a holiday where the girls were sick with colds, I didn’t think
anything of my son’s lack of energy assuming the virus had nabbed him too. As the
day wore on though, his cry became a sad moan, and when placed on his tummy his head
seemed too heavy to lift. I scooped him up, tried to nurse him and quickly grew
frustrated with his continuous biting. After a long night of failed nursing,
desperate pleas to my nursing village for help and very little sleep; my mommy
senses tugged, something was not right.

I remember driving to the emergency room while reaching back to hold his head in the
car seat so it wouldn’t flop forward, all while his cries had turned to wispy
whimpers. I cried too, what was happening to our son.

theo intubated

a couple days after being intubated

Infant Botulism effects approximately 80-120 infants in the US every year. Many
think instantly of honey and while yes, honey can contain the botulinum spores, so
can the soil in certain communities. Ingested botulinum spores does not in itself
guarantee that a baby will get botulism. A gut which allows the botulinum spores to
thrive is one key element in this disease and part of what makes it so rare.
Symptoms include constipation, weakness, lethargy, poor feeding, and difficulty
breathing. Spores are ingested, multiply, and result in paralysis beginning from the
head, down to the toes. Paralysis is temporary/reversible but botulism babies
often need breathing and feeding support until their bodies regain full fuction,
something that may take weeks to months to occur. It is rare..so rare that some care
providers never see a case in their entire careers.

Well, our local ER was a bit stumped initially, which made my mommy senses scream
just a bit more. A call to a local PICU changed all of that and soon we were being
transferred and Infant Botulism was suspected.

For once he looked so small. My robust, stocky fellow so helpless as they tried to
find a line through the rolls in his arms. Paralysis causing him to wince but be
unable to cry or open his eyes at this point as he endured multiple pokes. I spoke
to him, comforted him as best I could but was told I could no longer nurse him. He
needed a PICU, so by ambulance we went.

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intubated (again) with his mustache

Foggy and grim were our first few days in the PICU. From the institutionalized look
of a crib (especially cruel considering he’d only ever slept next to me) to the
uncertainties of what to expect.
I knew enough to request a pump but the horror of seeing my son intubated and
lifeless had robbed me of the milk that he had previously thrived on. Our family and
friends had questions, but we had no answers, and no timeline.

Medical staff clamored to get a look at our son, his pathology may have drawn them
over but the irony of his “vibrant” body made them a bit puzzled. Even a few nurses
admitted that they had come over to see his nearly edible thigh rolls.

An antitoxin was administered within 48 hours and our plan of action was to remain
in the PICU to maintain supportive care and wait.

With a pump and sheer determination (as well as a nursing village cheering me on) I
boosted my supply and proceeded to fill the PICU freezer with milk. I had never been
fond of pumping, but my stubborn streak took over and soon that pump became a
constant witness to the ups and downs of botulism recovery. It whooshed as I
celebrated my son opening his eyes, it whooshed as I cried tears of devastation, it
whooshed as I fell asleep when pumping at 3am (which resulted in many tears over my
precious spilled milk).

theo tube free mar 17

8 months and tube free

I stayed in the hospital alongside our son as he recovered. I read to him, spoke to
him, and sang to him. “You’ll soon be waking” from Baby Beluga (a lyric I later had
tattoed on my arm) became his theme song.

In all he spent 17 days in the hospital. He spent two weeks of that time in the
PICU . He contracted pneumonia, and after being extubated for 48 hours suffered a
lung collapse and was re-intubated. When he lost his IVs and needed dozens of pokes
I could not scoop him up to comfort him, but instead stroked his skin, nestled my
head next to his and shushed as his tears to fell upon my face.

When I was allowed to nurse him again it was like nursing a 25 lb
newborn. Our nursing reunion was not the glowing Madonna rendition that I had
envisioned, but instead a haphazard edition involving lines, machines screaming at
me and many witnesses. He bit me (as he had previously done to protect his airway)
and needed constant support due to low muscle tone.

His recovery was rapid considering a hospital stay of 6-8 weeks was the average that
research had revealed to our care providers.

Recovery continued as we were discharged with an NG tube and an assortment of
appointments for occupational & physical therapy as well as weekly weight checks. A
pump supplemented his nursing until he regained the strength to feed adequately and
on the 9th day post discharge he pulled his own NG tube out in gagging/sputtering
victory.

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Theo today

Now he is a vivacious 2.5 year old. You would never guess that he had ever been
sick. He never had a drop of formula or donor milk and I had in fact pumped so much
while he was in the PICU that I donated the excess to a mom whose baby needed it.
He nurses still, and finds great comfort in his “boombies”.

I now support moms as a LLL leader and have had the special joy of counseling moms
who have babies recently diagnosed with infant botulism. For more information
regarding infant botulism please visit infantbotulism.org.

102 Year Old Ran Marathons for Women’s Rights

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When I took up running, it was like meeting God himself. I have been running ever since. -Fauja Singh

 

Fauja Singh was born with a birth defect that prevented him from being able to walk until the age of five. At ten years of age, he said his legs were finally at full-strength.

However,  it wasn’t until the age of 89 when Singh began running!  After the loss of his wife and son he felt he was “more dead than alive” and decided to take up marathon running.

Singh not only completed marathons, he broke records! He became the star entrant in marathons all over the world.

“Running showed me kindness and brought me back to life by making me forget all my traumas and sorrows,” -Source

Singh soon found himself running to raise awareness for women’s right due to the recent rise in incidence of crime against women, which he said brought shame to India.

He told the Hindu that a Sikh would always stand in defense of women. Although, he is not just defending women who share the same faith as him. Singh explains history is full of Sikhs who have defended women of all faiths, but he did say, “I am pained to listen that my daughters, grand daughters and great grand daughters are no longer safe.”

At 102,  Singh listened to his body’s signals and decided to retire, but he still stays fit, active, and a  human rights advocate. His final race was the 10-kilometer event ahead of February’s Hong Kong marathon.

“I have retired because, given my age, my body has deteriorated a bit, but retirement hasn’t slowed me down.”

Are Vitamin and Mineral Supplements Harmful?

meme1Vitamins serve no beneficial purpose, according to three studies released December 16th, and published in the medical journal Annals of Internal Medicine. All three studies come to the similar conclusion that vitamins do not prevent chronic illness or disease and sometimes actually cause harm!

What many experts are now saying is that the American population is most-definitely malnourished, and vitamin and mineral deficiencies should not be taken lightly. However, we should be addressing these issues through better nutrition and not through vitamin supplementation.

Some important notes:

  • Folic acid and Vitamin B supplements could potentially be harmful to the general population.  (However, folic acid supplementation should not be avoided in the case of pregnancy!)
  • Beta-carotene supplementation increases smokers and asbestos workers’ risk of developing lung and gastric cancer.
  • Vitamin E (Omega 3) increases the  risk for prostate cancer.
  • Vitamin D still may still be beneficial, but further studies need to be done.

Time to get familiar with the produce aisle and your local farmer’s market!

A Breastfeeding Story: Breastfeeding Through Leukemia

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By Maggie Jones

 

I was committed to breastfeeding my daughter from the very beginning. Her
conception was a complete surprise, but as soon as I discovered I was
pregnant I began researching everything.

I decided to have a water birth at home with midwives, and learned
everything I possibly could about breastfeeding. I received many warnings
from well-meaning family members to not be too disappointed if my plans to
breastfeed didn’t pan out. But thankfully, I trusted my body’s ability to
provide everything my baby needed and vowed to stick with it no matter what.
I never set a “goal” about how long I wanted to nurse her; I knew I’d be
breast feeding until she decided she was done– be that two years, or five.

Olive was born in the water on September 2nd, 2012 after a peaceful and
joyous labor at home. Breastfeeding was a challenge at first– sore
nipples!– but all and all, educating myself on the most common pitfalls
really seemed to pay off. I had to do some problem solving when I developed
an oversupply and forceful letdown issue, but other than that our
breastfeeding relationship came very naturally.

Never have I been so thankful that I decided to breastfeed than now. Olive
was diagnosed with AML leukemia at the beginning of August 2013, just a
month before her first birthday. We are currently undergoing her third of
four very aggressive rounds of chemotherapy.

Her first week in the hospital was the most frightening and painful
experience of my life. Awaiting a cancer diagnosis and a prognosis for your
baby is something I wouldn’t wish upon my worst enemy.

Olive literally laid in my lap and nursed for five days straight. Through
blood transfusions and physical exams. Through the day and through the
night. The cancer was causing severe bone pain for her, and nursing was our
only saving grace; her only source of comfort.

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I will never forget my horror upon being led into the hospital room that
(little did I know) would become our home for the next six months and seeing
the thick metal crib. I was terrified they would have a policy against
co-sleeping. Lucky for us, I just needed to sign a safety waiver and the
crib (read: cage) was replaced with a standard hospital bed for us to share.

In that first week she had to have an IV placed in a vein on her head, a
PICC line placed in her upper arm, a central veinous catheter placed in her
chest, a bone marrow biopsy and lumbar puncture– all within the first three
days. I would put her in her favorite baby carrier and wear her while going
from our room up on the seventh floor to the operating room in a different
wing of the hospital. I held her close until the very last second when I had
to hand her over to go in for the procedure. They gave her a drug to help
her forget being taken away from me… I only wish I had a drug to help me
forget.

The first time I ever left Olive’s side since she was born was when she got
her port put into her chest so she could receive her chemo treatments. I
wasn’t allowed in the operating room. I was so scared and felt like a part
of me had been ripped away… Not what I had envisioned when I had imagined
parenthood.

Now, three months later, two rounds of chemo down, she is in remission! As I
mentioned above, we are currently inpatient while Olive undergoes her third
round.

The doctors warned us of many likely side effects Olive would experience
from her treatments– mouth sores, high fevers, nausea, loss of appetite
often resulting in tube feeding, etc.

So far we have seen minimal side effects. And although her appetite has
definitely fluctuated with solid foods, she has been able to tolerate breast
milk through and through.

It’s difficult to know why she has done well with her chemo because there
are so many variables, but I know that my milk has helped her avoid mouth
sores and the antibodies have helped protect her from secondary infection
while she is extremely immunocompromised.

There are even studies being done on the potential cancer fighting effects
of breast milk, so who knows for sure, but I’m fairly certain my decision to
breastfeed has played an integral role in saving my baby’s life.

We still have a long road ahead of us, but hopefully be early 2014 Olive
will be done with treatment, cancer free, and our nursing relationship will
continue for years to come.

If anyone is interested in following Olive’s story you can do so at her FB
page “Sweet Baby Olive“; www.facebook.com/oliveleighfleming

To submit your breastfeeding story, please visit our submission instruction page: iamnotthebabysitter.com/breastfeeding-story-submissions

A Breastfeeding Story: Breastfeeding While Having a Pituitary Tumor

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By Heidi Thomas

My breastfeeding journey has been just that—a very long, tiresome, surprising and rewarding journey.

Seven years ago I was diagnosed with a prolactinoma, a prolactin secreting tumor on my pituitary gland. I hadn’t cycled for about two years, and was using OrthoEvra, the birth control patch exclusively prior to my amenorrhea for nine months. I visited my family practitioner, mainly out of curiosity as to why I hadn’t had a cycle for so long. She did a routine blood work up and found my prolactin levels to be unusually high, so she ordered an MRI of the pituitary gland. Sure enough, a small tumor was present. I was immediately prescribed bromocriptine to contain the tumor from spreading and growing into other areas of the brain. Within a few months, my cycles returned and were fairly normal. It wasn’t more than a year later that we became pregnant with our first daughter, K. I had a normal pregnancy and routine vaginal delivery with epidural. While I had read a few books about breastfeeding during my pregnancy, my knowledge base and support systems weren’t strong enough to endure the problems we were about to encounter. K had a good latch and was nursing decently but on day three, it was obvious she wasn’t getting any colostrum or milk from me. The lactation consultant immediately started supplementing her with Alimentum in hopes that maybe my milk would come in a bit later. I used the SNS exclusively while formula feeding. I started pumping after every feeding. I took copious amounts of Fenugreek. To say I was devastated would be an understatement. I had just assumed that the mechanics of nursing would work themselves out. I had never prepared myself for a lack of milk production. I never experienced the euphoria of nursing much less a pain free nursing session. Looking back, I wonder if K was tongue tied. I developed a terrible breast infection, was cracked and bleeding and cried through nursing and pumping sessions. Eventually, after 7 weeks, I gave up nursing and went straight to bottle feeding upon the recommendation of my family doctor who said “formula’s not that bad”. The only explanation as to the lack of milk production was that my body was “protecting” the tumor from growing and withholding large amounts of prolactin from entering my system. I clung to this information—that it was my body’s way of keeping me from dying, basically. I was still skeptical inside though and swore I’d get to the bottom of my pituitary issues one day. I wasn’t content with my daughter’s pediatric care, so I sought out another pediatrician in the area. Upon interviewing him when K was 7 weeks old, he expressed deep concern over her being exclusively formula fed. He gave me information on how to find local milk donors and encouraged me to pursue those options. So, I did what every good mom does and sought high and low for milk donors. I knew that if I could find one, there had to be many others out there that would help us. Sure enough, K was exclusively breast milk fed from 7 weeks until 13.5 months.

I started seeking treatment and answers for my lack of milk production in between my first and second daughter’s birth. I knew there had to be help for me, I just needed to find it. I started receiving care at OHSU by a Pituitary Endocrinologist. She confirmed my prolactin secreting tumor and couldn’t really give me any additional advice as to why my body didn’t make breast milk. She wasn’t invested in breastfeeding though, and said her children were both formula fed and healthy. I continued seeing her for my care, but decided that help for nursing would come from someone else. About a year later, my doctor recommended I start a drug called Cabergoline. She said there were new studies that were suggesting this drug could essentially starve the tumor and potentially kill it. I was willing to try it, as I was certain that if we could just get rid of the tumor altogether, then maybe I could nurse my future children. I was on Cabergoline for 9 months. After a follow up MRI, the tumor had grown to an uncomfortable size. I underwent brain surgery about a week later and had the tumor removed. They warned me about the risks of infertility, etc. since they were operating on a sensitive part of the brain. 2.5 months later, we moved to China for an overseas teaching opportunity for my husband. 6 months later, we conceived our second daughter. I had a normal pregnancy and natural vaginal birth and did everything I could to ensure a completely natural birth, in hopes of giving breastfeeding my best shot. Looking back over both pregnancies, my breasts never changed size, I didn’t experience any type of engorgement nor let-down experiences. I started nursing S immediately after birth, and had skin-to-skin contact immediately. She left a large hicky like bruise on my left breast within a few minutes of suckling. This girl had a strong suck reflex! I braced myself for the pain of nursing but continued to persevere. I had Dr. Jack Newman’s all purpose nipple ointment, lanolin, gel soothie patches, amongst other natural remedies for healing my sore nipples well ahead of S’s arrival. Earlier in my pregnancy, I had been gifted a large chest freezer from a friend who was moving, so I thought that was a sign that I should start seeking breast milk donors just in case I had a low supply. I put an online ad on a parenting group I’m a member of in Beijing seeking out donor milk. Within a few days, I’d already had several moms responding stating they’d love to be ongoing milk donors for our baby. I could barely believe that I was able to secure donor milk ahead of time in China. I’m so thankful I did, because my milk never fully came in post delivery. I remember being giddy with excitement when in late August I was able to hand express a couple drops of colostrum in the shower. I thought for sure I would have a full supply of milk if I could hand express before our daughter’s arrival. Unfortunately, that was wishful thinking. I nursed literally around the clock for the first week. S barely slept for any length of time the first few weeks, as she was constantly nursing and trying to get enough nutrition to her body. She was born weighing in at 7.2 and dropped at her lowest to around 5 pounds. The lactation helper at the hospital we delivered at was puzzled and said she had a good latch from the start, and that she couldn’t figure out why things weren’t working out for us. It was around day five that I called the La Leche League hotline number in Shanghai and spoke with a sweet mama. She was such an encouragement to me that day and kept me from giving up on nursing. I was deeply committed to making this work and was scared that starting supplementation would be a slippery slope. It became apparent by around day seven that I needed to start supplementing something for S. Here output was not what it should have been at all—there were several days in between bowel movements, her irritability at the breast was increasing and she was not gaining weight back like she should. I used the SNS exclusively as well as finger fed and cup fed. I got in touch with another LLL, an IBCLC in Beijing. She was a huge source of encouragement to me during this time. I had friends back home, in the states, who continued to encourage me to look into tongue and lip ties. They were convinced that S had some sort of posterior tongue tie that wasn’t allowing her latch to be efficient enough at drawing milk out. Meanwhile, several weeks passed and S slowly gained her birth weight back by around six weeks. I traveled to Beijing regularly for doctor appointments with a fabulous American expat pediatrician, and visited with my new friend and LLL leader about my case often. I pumped regularly, started taking 90mg of domperidone by around 3 weeks postpartum, started an herbal regime of fenugreek, blessed thistle and goats rue, drank copious amounts of water, tried visualization and relaxation exercises—you name it, I tried it. Nothing was working. I started to experience more nipple pain and soreness by around the fourth and fifth week. Everyone was puzzled. I was finally coming to the reality and conclusion that supplementing her would be essential long term, but at least I could enjoy a nursing relationship with her by using the SNS exclusively. In the days and weeks following, my family and I sought out donor milk urgently. Our hard work paid off and I was able to pick up milk from many different moms—both local and expats. I attended Chinese LLL meetings, shared my story with a well known lactation consultant who publicized our story on Weibo (Chinese social media site) and even received a large milk donation in the mail from Shanghai! Our story was going viral quickly in China, and it was apparent that we were an inspiration to many.

Her weight gain continued to be an issue, and after some encouragement from the LLL leader and her pediatrician, bottle feeding her in addition to nursing was implemented. S was simply burning too many calories at trying to nurse-albeit, ineffectively. She took a bottle easily and for about a week, things were going okay. After the first week of bottle feeding, I started noticing that she would make a clicking sound when sucking and she’d drool and not create a good seal around the bottle nipple. It was as if her problems breastfeeding moved into further problems bottle feeding. I started getting more serious about researching posterior tongue ties and started gaining confidence that this was a problem we were facing. When S was barely a week old, I had her evaluated for tongue tie at the international hospital where she was born, and they quickly dismissed it. They said she could stick her tongue out and that tongue tie was irrelevant. I felt discouraged and that no one would take me seriously. My friend and LLL leader in addition to her pediatrician listened to my concerns but were uncomfortable diagnosing posterior tongue tie as they just didn’t have a lot of experience in dealing with it. Up to this point, I’d undergone every test in the book to try and explain my milk supply issues. I had a vaginal ultrasound (I would NEVER do this again 3 weeks post partum! Ouch!) to check for retained placenta, all of my lab work was done including checking my thyroid function. Everything came back normal. I was not iron deficient. My prolactin levels were normal for a newly postpartum nursing mother. We were hitting a dead end quickly and everyone could feel it. Answers were around the corner and I didn’t even know it and my intuition started steering me deeper and deeper into posterior tongue tie problems and how that could impact a mother’s milk supply. I watched video after video on youtube related to tongue tie. I read every article on low milk supply and tongue tie and I could even feel a ridge or bump under her tongue indicating a problem. It was too convenient to dismiss my nursing struggles as my own though—after all, I had a complex medical history and there was no reason to doubt it was MY body and MY issues creating this mess. I wasn’t convinced.

I was invited to a breastfeeding conference in Beijing by my friend and LLL leader earlier in the month, and she asked me the day before if I’d be the live “case study” for the evening with world renowned IBCLC, Linda Smith as the key note speaker. I eagerly agreed, secretly holding out hope that this woman would be the answer to my problems—surely she would know SOMETHING that no one else did. Right? Right. I took the train up to Beijing, sat in a taxi for 2+ hours in traffic and made it to dinner nearly 45 minutes late. I was devastated and thought I’d lost my one and only chance at getting answers that evening. Thank God I was wrong! Barely 10 minutes went by before Linda saw me from across the table, commented on her frontal bone structure, observed her at a distance nursing and asked to see the baby to check for a tongue tie. She didn’t even need to ask other questions. She knew. With a quick washing of the hands, S was in Linda’s arms and we for the first time heard the best news of the year. S was tongue tied in the back and needed surgery to rectify the problem. She casually offered for us to fly to Dayton, Ohio for the procedure and guaranteed that she could help our nursing relationship with the help of other practitioners in her area. I eagerly agreed. At the end of our evening together, tears rushed to my eyes as Linda embraced me and told me with certainity that “I’ve got this.” It was just what I needed to hear after working tirelessly for weeks without seeing any improvement or light at the end of the tunnel. In the meantime, I was to pump every two hours, nurse, cup feed and try to build up my supply once again. Two weeks later, I landed in Dayton, Ohio and the morning following, S received her first cranial-sacral appt. There was an immediate difference in her head and she regained full range of motion in her arms and neck muscles. A few hours later, her posterior tongue tie and lip tie were treated by laser treatment from a well known pediatric dentist. For the first time, I experienced a pain free nursing experience from S within minutes of the surgery.

I was given a gift in Ohio, one I won’t ever take for granted. I met two of the most amazing people ever, along with experienced medical practitioners who truly invested, validated and confirmed what I had thought all along. It was wonderful to finally be “heard” and taken seriously and be told that I was right. S and I were given a second chance at nursing.
I wish that I could say this was the end of our journey, and the rest was a piece of cake. Despite having a beautifully challenging and healing week for S and I, she received two cranial-sacral treatments, one of which helped S work through birth trauma, and surgery for her posterior tongue tie and lip tie, both of which were severely impairing her ability to draw milk from me, she still needed to have a second tongue tie revision stateside three months later. We maintained tongue stretching exercises in addition to suck training to help her re-learn how to use her tongue efficiently, but there was still some reattachment that occurred. The second surgery was also successful and while we had a few moments where I thought nursing would be dismissed, S came around and we persevered together.

My sweet girl is two days shy of celebrating her first birthday. I am feeling incredibly grateful for the second chances we’ve been given at breastfeeding. We worked incredibly hard for this kind of outcome, and I’m continually encouraged at her progress. While I was never able to exclusively breastfeed her, I have chosen to remain incredibly thankful for the gift of a healthy baby girl who is able to enjoy breastfeeding as much as I do. She consistently falls asleep nursing and is very eager and enthusiastic about breastfeeding. We have enough human milk stashed away in our deep freezer for at least six more months, with plenty more to come as needed and S is more and more eager and content to nurse multiple times a day. I am now an official LLL leader applicant and look forward to working with and encouraging mothers in their breastfeeding journeys.

Fruit and Herb Infused Water Recipe

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The Institute of Medicine has determined the adequate amount of water per day for men is 3 liters (13 cups) and for women 2.2 liters (about 9 cups). – Mayo Clinic

That’s a lot of water!

Granted, we are getting some of our water intake from other beverages and fruits and vegetables we consume, but many of us know we aren’t consuming enough fluid in a day for our bodies to run their best.

Drinking an adequate amount of water has been shown to improve complexion, help maintain a balanced weight, lower risk of heart attack, cleanse the body of cancer-causing toxins, and the list goes on and on.

Basically, water is important. 

So, I’ve decided to consciously improve my water consumption throughout the day.

One thing that has been helping is making fruit water. I’ll prepare the water at night and in the morning I’ll have the entire pitcher to drink. I know I’m getting enough water if I drink the water from the pitcher, plus it reminds me of being on vacation or a spa.

Fruit and Herb Infused Water Recipe:

1. Select sliced fruits (or slightly muddled berries) and sprigs of herbs of your choice. Add to empty pitcher.

My favorite combinations lately have been:

Lemon/Lavender

Strawberry/Orange/Mint

 Blueberry/Apple

and Blackberry/Basil.

2. Add water and refrigerate.

If you can make it at night and then refrigerate it overnight, that is the best way to go.

Enjoy!

Preeclampsia – My HELLP Syndrome Story

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Brian holding Aram for the first time. (My first time holding/meeting him was three days after this photo was taken.)

300,000 women each year will be diagnosed with Preeclampsia or HELLP Syndrome.

Knowing the signs and symptoms is the single most important thing you can do to increase you and your baby’s chance of survival.

Unfortunately, you can’t always trust the medical community to make an early diagnosis. Preeclampsia, and especially HELLP, are finicky diseases in the beginning stages and often go undiagnosed until the situation becomes severe.

Preeclampsia affects between 5-10% of all pregnancies. HELLP is considered rare, but I have met multiple women that have casually brought up that they had suffered from HELLP.

500,000 infants and 79,000 mothers die from Preeclampsia and HELLP each year.

I don’t think I have ever shared my full birth story on here. It is really hard to talk about in detail….but for this cause I definitely think now is a good time. I am a prime example of why awareness saves lives.

Since my HELLP Syndrome pregnancy, I have developed PTSD and a severe anxiety disorder- Aram and I are both alive.

Pre-term Labor

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In Hawaii right before preterm labor started.

I remember being around 29 weeks pregnant and going into preterm labor. Brian was working nights and I was all alone. He lived 62 miles away from our house so I had to drive myself to L&D with my sister on the phone with me the whole way there.  When I got to the hospital, they took my vitals and I met “S” my nurse. She was from Ethiopia. I told her we were planning on adopting from Ethiopia, and she sat and told me stories of what it was like there while we waited for the doctor to come in. She told me why her family came to America. Her sister had developed a rare eye cancer and they came to UCLA for treatment. Unfortunately, her sister passed away from her illness. It was clear that her compassion in nursing came from her own experience on the other end of care.

The doctor came in soon after. They gave me terbutaline and released me a few hours later.

A week later, I had been in twice with the same scenario. My sister being on the phone with me the entire time each visit. No one could really explain why I kept going into preterm labor. “Sometimes it just happens,” At this rate, I knew we were going to be in for an early delivery.

Something is wrong

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At our baby shower. At this point in my pregnancy I was gaining weight daily from fluid retention. By the time Aram had arrived I had almost doubled my pre-pregnancy weight.

At 30 weeks, I remember noticing how swollen I really was. I was an unhealthy 93lbs when I became pregnant and at 30 weeks I think I hit around 130lbs.  Doctors and nurses said nothing about my weight gain except they were happy I was putting on so much because, “underweight women should really gain more than women with normal BMIs.” Which was completely correct. The only problem was that the weight I was gaining was water weight and no one noticed because of how underweight I was to begin with.

At 31 weeks, I was so swollen I thought they were going to have to amputate my finger to get my wedding ring off. I started thinking that this couldn’t be normal. This never happened to my mom or sister in their pregnancies. I Googled “swollen hands in pregnancy,” and the first 100 hits were all Preeclampsia related. At this point, I had never even heard of Preeclampsia. I called in to L&D and a nurse came on. Our conversation:

me: I think I have Preeclampsia, but I’m not sure

nurse: Why do you think that?

me: My hands are really really swollen

nurse: Do you get a ringing in your ears?

me: Yes (it was happening every day)

nurse: Do you see flashing lights?

me: I’ve been seeing stars lately for no reason. The kind like when you stand up too fast.

nurse: Um… you need to come in immediately.

It was about 11:00PM and I told Brian. Off we went to L&D.

When we got there, my favorite nurse from my first trip there was working, the one from Ethiopia. She came over and hugged me and took a look at my blood pressure. At that point, the other nurses told me my pressures were not high and I was fine. “S” had another opinion. She said, “You need to look at what your blood pressure is normally, and then base it off of how much it has changed. Your pressures last time I saw you were like an athletes, now at 135/88, they are less than ideal. I don’t like this at all.”

I, once again, was discharged. They noticed my uric acid was high (a sign that Preeclampsia may be starting) but the midwife I saw gave me antibiotics and told me I had a UTI. I told her I had many UTIs and I know even when the most mildest is forming and I did not feel like I had one..but they didn’t believe me and sent me on my way.

Severe Symptoms

I made it another few days and noticed a dull headache was forming. I went to see a nurse practitioner for a dermatology referral. The tech took my blood pressure and her eyes were popping out, “your blood pressure is REALLY HIGH!” I was over 145/93. I went in to my appointment and the NP said NOTHING about my blood pressure. I figured it wasn’t bad and went home.

My OB appointment was a few days later. The tech was covering for multiple people. I asked her what my urine dip was, “just trace” (meaning not Preeclampsia) I told her my blood pressures had been high. She never came back in to take my blood pressure. I left the appointment and forgot to have her take it. When I got home, my medical record was emailed to me. I saw that she put in a fake very healthy blood pressure of 105/69, which would later come back and bite me in the butt. This was partially the reason I kept getting misdiagnosed.

I made it to my dermatologist appointment, where the tech took my BP and it had made it to 150/98. I decided at that point I better go down to the OB nurse. She took my blood pressure and it was 156/105. She told me I needed to immediately go to L&D and with my blood pressure so high, I shouldn’t walk. Well, this was pre-hypochondriac Jamie, so I walked.

This is where I met Nurse Rudolph. She had me lay down to get my blood pressure unnaturally lowered. It then went down to 138/80. The doctor came in to check me, but she got to him before he could see me. She just said, “She’s fine!” and gave him something to sign without reading my chart.

My mom flew in that day.

The next morning I started bleeding and going into preterm labor. If these doctors weren’t going to notice something was wrong, Aram was going to make them.

We went to the hospital where I had the most lovely Asian doctor and nurses. They worked together as a team, which was great, but since they all spoke Mandarin to each other I felt a little clueless as to what was going on.  However the team took me seriously, and finally gave me the validation I had needed. At that point, I realized I was sick and I was expecting to be sent home again. Luckily because I was bleeding my urine dip came up a misleading “plus 3″ (needed for diagnostic Preeclampsia) The doctor looked nervous and immediately gave me a steroid shot in my side (to mature babies lungs for an inevitable preterm birth).

I then was taken into an observation room where I met my Perinatologist. I saw him a couple of times months after my delivery where I found him to be the most kind and ethical doctor. Unfortunately, that would be the only time I saw him during my stay in the hospital.

Feeling Completely Alone

In the days following, I became a nervous wreck. One of the physical symptoms of HELLP is nervousness and anxiety, which I noticed increased significantly right before I found out how sick I was. However, I believe the majority of this came during the time I discovered none of the doctors or nurses believed I had Preeclampsia. My mom and Brian knew nothing about the disease and also trusted the doctors, so I felt like I had lost them, too.

I had a resident doctor who actually thought my nervousness was caused by my blood pressure getting taken every 30 minutes. She then called for my blood pressure to NOT be taken. I also refused any more terbutaline (the perinatologist advised against more due to my heart rate being so high, but apparently no one was reading his orders). The same resident doctor told me that the staff would be mad and essentially hold a grudge against me if I had a preemie baby because I refused the medication.

The single most damaging moment for me was when nurse Rudolph returned, giving me “care” during my time in observation. I remember telling her how I was glad I had made it to 33 weeks and had my steroid shots in case the baby had to be born early due to Preeclampsia. She sat down next to me and said, “Oh Dear, stop saying you have Preeclampsia. You don’t want Preeclampsia. Worst case scenario, you and the baby would die! So stop saying you have that because you don’t.”

She then explained to me that Dr. Rudolph would be discharging me that night, and tried to make me feel guilty because other people who “really needed” the beds in observation could not get in and I was basically taking it away from “people who really are sick.”

I really don’t understand what her motives were behind all of that, but I have never fully recovered from the psychosis that came after realizing I was totally alone. I knew I was sick and I thought, “Wow, they are really going to let me die…”

I was on the phone with my sister in a panic and I remember her and her husband praying for me.

I then had a new doctor walk through the door.

Breakthrough

He came in and sat on the cot that Brian had been sleeping on for the past few days. He introduced himself and said, “Well, your 24 hour urine showed that your kidneys are functioning beautifully (which means I did not have diagnostic Preeclampsia) but how are YOU feeling?” I told him I felt like I was going to die. He then answered with the best words I have ever heard, “You are the best judge of you. We will keep you here and I’m going to run a few more labs.”

At that point, they came in to do some blood work and I began to read 1 Samuel chapter 1. I remember vividly reading and praying.

I was interrupted by two nurses carrying in a bag of magnesium sulfate. The nurses were really calm and sweet, but wouldn’t let me know what was going on. Then the doctor came in.

Doctor: “We have your blood work back. Your liver enzymes have tripled and your platelets have dropped to 120K. I would like your permission for a cesarean.” 

Me: “YES!”

My mom: “There is no way of having a natural delivery?” (my mom was delirious and has no memory of saying this, but when Brian and I told her what she said, she replied with, “Why didn’t you punch me in the face?”)

Doctor: “No, her condition is very severe. We will be operating in 30 minutes.”

Aram is born

It wasn’t even 5 minutes and I was in the delivery room. There was a staff of about 15 people waiting for me (and Aram)- it was weird knowing they had all known about the severity of my condition before I was even told.

Aram was born quickly after. I remember hearing him crying and one of the NICU staff members trying to bring him over to me, but I was groggy from the mag and don’t remember much.

The next few days are a huge blur. I thought my blood pressure was going to go down immediately after delivery, but it didn’t. My doctor was away and I somehow convinced the on-staff doctor to keep me on the magnesium sulfate an extra day.

I remember my doctor frantically coming into my room when he returned. At this point I had turned into a huge hypochondriac and I felt I was the only one that could take care of myself.

Doctor: “Why are you still on magnesium sulfate!?”

Me: “My blood pressure is still really high and I thought I needed an extra day of it.”

Doctor (laughing, kind of): “How were you able to convince the doctor to do this? You know that this is a delicate balance? If you stay on it for too long it becomes toxic!”

Me: “I had no idea…”

Great, so I already almost poisoned myself….

I was discharged and told to come back in two weeks for a blood pressure check. I was not told that most preeclampsia deaths happen postpartum, or to be checking my blood pressure at home. I had to figure this out on my own. I had scary but benign symptoms like weird jerking movements from my brain being swollen…Oh and spontaneous bleeding from my eyes and nose due to my platelets dropping under 100K.

However, my blood pressures were still a cause for concern.  We bought a blood pressure cuff, and made a trip a few days later to the ER where they were so concerned I had to get a CT scan of my head.

I then went to see a GP about controlling my blood pressure. It eventually went down, but I needed a lot of medication to balance it out the first several weeks. My GP knew nothing about Preeclampsia, definitely never heard of HELLP Syndrome (much like a lot of the L&D nurses)- and he was even more confused about how to wean someone off of blood pressure medication.  Once he puts people on blood pressure medication, they are generally on it for life. We had to learn together.

I’m not forgetting about Aram, just saving him for last. There are more deaths of infants from Preeclampsia than mothers. Aram was one of the lucky babies.  Preeclampsia is a disease that leads to a catastrophic cascade of events. Eventually your blood flow gets messed up and your entire body starts to attack itself.  PE babies often have IUGR from the body trying to protect the mother (a balancing game of nutrients in any pregnancy). In my case it chose the baby over me, and my body was still able to hold out to 33 weeks.

He was born with developed lungs (thanks probably to that quick thinking L&D doctor), a healthy weight, and was doing as well as a full-term baby. His sucking reflex wasn’t quite developed yet, but it took about 10 days and he was able to nurse like a pro.

So that was my story. Unfortunately, it isn’t that unusual. Here is an almost identical story (in terms of care) to mine, except this mother did not make it. Her husband wrote this story, here is the most heartbreaking section (at this point in the story she had the baby, was discharged, and home with no instructions):

That evening we went to bed at around 11:15pm. About an hour later I was awoken by her and was told that she “needed my help.” Quite groggy, I took a moment to get my bearings and then accompanied her into our kitchen. When I asked her what was wrong, she said she couldn’t breathe and quickly devolved into what appeared to be hyperventilation accompanied by extreme anxiety and fear. I tried to calm her but it just increased to a point that about 5-10 minutes later I called 911, having determined that it was beyond my scope of understanding. I stayed on the phone with the dispatcher for 7 painful minutes while my wife went from a seated-on-the-chair position to a seated-on-the-ground position to a laying-on-the-ground position. At the same moment that the paramedics arrived, my wife stopped breathing and began to turn blue. Though the paramedics tried in vain to get a pulse and start her breathing again, they ultimately left the house performing CPR on her, heading to the hospital only 5 minutes from our house.

I was told upon arriving at the hospital that they had managed to regain a pulse after 25 minutes but that my wife had most likely suffered severe brain damage from the lack of oxygen. Their prognosis for recovery was grim, with little hope given for any meaningful recovery. For all intents and purposes, my wife had died in my arms on our kitchen floor, her final words being “I love you.”

Here is a video about another mother that died of HELLP:

And this video demonstrates the importance of blood donors out there! Saving so many mother’s lives pre- and post- pregnancy.

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Kids Healthy Eating Tips from Dr. Jay Gordon

Dr. Jay Gordon is a vegetarian that encourages a vegan/vegetarian lifestyle. I am more of an omnivore, but I’ve learned so much from him about child nutrition and getting kids excited about eating healthy foods that I want to share some of it with you.

 

Teach her that fruit is the sweet.

A berry tastes incredibly sweet unless you have just eaten an Oreo cookie. Help your child appreciate the sweetness of fruit by limiting artificial sweets including cakes, cookies, and most any of your favorite guilty pleasures. They don’t have to be her guilty pleasures!

Offer two bites of each vegetable until your child acquires a taste for it, but don’t force him to eat any certain food.

Two bites are manageable for a toddler. If he wants more, he can always ask for it. Forcing a child to eat his peas will, at best, be a power struggle between parent and child. At worst, it will cause an aversion to the green vegetables that instigated the fight.

Make a Bargain.

Try this: ‘You’d like more fruit? Okay! Eat one bite of your asparagus and then I’ll cut up some strawberries!’ We don’t encourage taking this method too far, but if he doesn’t want to try his asparagus before getting seconds on strawberries, he might just not be hungry. Self control when it comes to food is going to be an important lesson for our children to learn.

Present fresh and healthy vegetables in delicious and fun ways. 

Whether you steam your green beans with onions or shape kiwis into palm trees, children are simply more likely to eat vegetables that are tasty, cooked well, and look appetizing.

Don a disguise.

Hide vegetables within the foods they love (i.e. a small amount of green beans blended in the tomato sauce for pasta; spinach in a strawberry mango smoothie). We only recommend this idea when offering vegetables on the plate in addition to the vegetable purees. Just think of it as added nutrients, but not the only way they should be consuming vegetables.

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