Episode 378

Her breastfeeding story began with her first 2 children, long before we met. There was a 7 year gap between her second and third baby. With Megan and Toby, she pursued very traditional medicine. Whatever she was told to do, she always followed her doctors advise and never questioned anything she was told. She did not realize at the time, but following some of her pediatricians advise is what compromised her breastfeeding and was a factor in her low milk supply with her first 2 babies.

At about 6 months with each baby, her supply appeared to “dry up.” She struggled to give them enough of her milk and began supplementing with formul because, of course, her babies needed to be fed. At that time, Shelly had never heard of an IBCLC and did not know she could get help with breastfeeding. She just thought that this is the way things go. At 7 months she quit breastfeeding with each baby.

What motivated Shelly to have a different attitude toward breastfeeding her 3rd baby, Jacob?

Her second child, Toby, was diagnosed with an auto immune disease called eosinophilic esophagitis. This is a condition in which your white blood cells attack your esophagus and it ends up hardening and losing its peristalsis which creates swallowing and digestive issues. It was around this time that she began persuing alternative medicine. She began using a naturopathic physician, along with her pedicatrician and her Gastroenterologist. She felt good about the health care team she put together. It was important to Shelly to be open with each member of the team. She want everyone to work as a team. She did not hide anything from either physicians as she felt it was best to work together for the benefit of her child. Eventually, Toby was able to discontinue all pharmaceuticals as well as natural supplements and now controls his disease through diet.

By the time she was pregnant with her third child, she was a different parent. Shelly was using naturopathic medicine for her families health care. She was questioning traditional medicine and utilizing it when she needed it. She was now a full partner in her families health. She was a changed person and truly recognized the importance of exclusive breastfeeding. She was now radically committed to breastfeeding by the time she had Jacob and wanted to exclusively breastfeed him. She wanted to avoid formula in case he had the same experiences as her son had.

Jacob’s story:

When her pediatrician told Shelly that her baby was not gaining the appropriate weight and recommended she supplement with formula, she asked her pediatrician if there was anything else that she could do. She suggested seeing me as she had referred many of her breastfeeding mothers to me.

Shelly made an appointment and I saw her that same day. Our appointment was quite productive and as Shelly states: ” I gave her some good tips on breastfeeding, which included latch adjustment as well as helped her learn how to breastfeed laying down. Now that she understood the importance of cue feeding ( demand feeding), Shelly needed a way to help with sleep deprivation. I taught her how she could feed Jacob laying down so she could get much needed rest and not have to get up and go to the chair in the middle of the night to breastfeed her baby.

With this appointment, Shelly learned a few things about the previous breastfeeding advice she was given. She learned that:Breastfeeding is not suppose to hurt. She put up with it the first 2 times because she thought this was normal.She learned how to safely breastfeed laying down. With her first 2 babies she not only did not question the sleep training she was taught, she welcome it because she was so sleep deprived.

Schedule feedings, along with breastfeeding pain, longer night stretches and hormonal changes, all contributed to her low supply.Shelly felt confident as she put together her team – her naturopath, her pediatrician, her IBCLC and herself. All working together to ensure she had a well fed baby and kept up a good supply. Shelly still had milk supply issues but they were fairly minor until around the 7 month where she noticed her supply beginning to drop again just like it had the other times. Only this time, she utilized what she had learned so far and with the recommendation to have her hormones tested, she learned that her hormones were quite out of balance. Once the testing was complete, she followed the recommendations of her naturopath and began taking over the counter hormones.

Shelly still had supply issues and that is where we partnered with her naturopath to make a plan to continue working with her supply. Once she had hormones tested, her Dr. said that her hormones were so out of whack. He put her on some OTC hormones and when she made that change, she saw a boost in her supply. With all of this, she still struggled to make enough milk for Jacob. At this point, she had exhausted all efforts as she was doing everything she possibly could to provide a full supply. At this point, I recommended that she read the information about Domperidone by Dr. Jack Newman and speak with her Dr. about possibly adding Domperidone to her daily routine. Once she did her research, she decided to add Domperidone to her routine.

Jacob had significant food allergies until he was 15 months, so he breastfed until he was about 3 until his immune system was strong enough to handle a variety of foods.

Can’t anything with breastfeeding go easy for Shelly?

With her 4th baby she had postpartum hypertension. Listen to the show to hear the details about her scare in the parking lot of her baby’s pediatricians office. She had just brought her days old newborn to the pediatrician. She was tongue tied and scheduled to have a revision. The day did not go smoothly, easy or as planned.

Shelly talks about almost dying, landing in the Cardiac ICU and what it was like for her in the hospital to figure out how to provide milk for her newborn.

1. Where could she pump?
2. How could she pump?
3. Where could she store her milk?
4. The search for donor milk
5. How her brother factored in to all of this.
6. How her mother just jumped in her place taking care of MaddieOnce home from the hospital, she continued to breastfeed her throughout the whole situation, with reclining, support of her mother, donor milk and lots of co-sleeping for the 12 weeks she had to be on bedrest.

Supportive family members help Shelly succeed in her breastfeeding goals:

Her husband agreed that seeking help from an IBCLC was a good investment in breastfeeding. They continued to revisit their budget and figure out where they could make changes in order to help pay for breastfeeding help, her pump rental, supplements and Domperidone. Shelly was adamant about this and both she and her husband knew how important exclusively human milk was to her baby’s overall health. Yes, she was highly motivated to keep going.

What happens when you lead a busy life?

You forget things. Even life changing important things. How could she have possibly forgot about her major cardiac issue? The 12 weeks she spent on bedrest after Maddie was born? Shelly almost forgot the coordination it took for her to – first reach out to me so see if we could find her some donor milk, have her brother be the pick up and delivery guy, her mom feeding the donor milk to Maddie and babywearing her in Shelly’s sted.

As we talked about this time in her life, which happened about 6 years ago, all these memories came rushing into Shelly’s mind. She is grateful for the milk donors and for everyone else who helped to make things smoother for her and Maddie.

Please check out: My Breastfeeding Class to find out how you can help Shelly and her family with healthcare expenses not covered by insurance.

Part 2

Shelly thought it was important to share how critical her husband’s support was to her success with breastfeeding. While he was not the one who was actually breastfeeding, he was helpful in practical ways. Kevin gave her the time and space to pump – by being a partner in parenting and taking care of whatever household duties that needed to be done, while she pumped.

Financially – Shelly was a stay at home mom and her husband ran his own business. They assumed breastfeeding was going to low or no cost with needing to purchase just a few items. With her challenges, they quickly realized that breastfeeding was going to cost them more than they had anticipated. All of a sudden they had a choice to make whether they should invest in breastfeeding.

The big question on the table was not: Should they breastfeed or spend zero dollars? No, the choice was: where to put their dollars – to breastfeeding or for formula. Together they calculated the costs of formula vs. the cost of what breastfeeding was going to cost. They decided they wanted to use their money to feed their baby as much breastmilk as possible. Because this was not an item they had a line for in their budget, they needed to figure out how to get the money to invest in breastfeeding.

What did they spend their money on? lactation consultations, hospital grade pump rentals, scale rentals, meeting with Naturopathic Physician, lab work, purchasing hormone supplements and Domperidone.

How did they find the money in their budget to pay for these expenses? Shelly does not remember how much it all cost, but she does remember that it “was a wash.” She said they took a look at their budget and gave up all non-essential items. Her feeling is that many people can find the money needed to feed their baby. They can give up meals out or movie night or netflix or fast food or their coffee lattes or other items for a short time.

Grateful for Kevin: He really was very much her breastfeeding partner as he was committed to the process, which made the journey easier. She can appreciate the difficulties other women may have if their partner is not committed to the process as she is sure she could not have overcome the struggles in breastfeeding had he not been fully supportive.

Jacob: She says that Toby’s health ( her 2nd baby) was the fuel behind their committment to work hard at breastfeeding. Given all the health issues Toby had, she knew breastmilk was important to Jacob.

Advice for new moms:

If you want to breastfeed and can’t afford a visit with an IBCLC –
Find a free local group, like LLL, to gain confidence to move forward.
Shelly did not know about these groups with her first two babies. She does say that she wishes she started there with her first. She feels the other moms would have been able to share their knowledge and wisdom and she would have had this information as well as her pediatrician’s information and been in a better position to balance all the information and make informed choices.

Choices:

Traditional medicine did not give me a recipe for a successful breastfeeding relationship. It gave me a list of rules and suggestions disrupted a successful breastfeeding relationship. Shelly knows now that strict rules exacerbated her ability to make enough milk and it led to the decline of breastfeeding.

Shelly’s thoughts on being able to afford to hire expert help:

If you want to breastfeed, get help. Shelly did not know with her first 2 babies that there was help out there.

If you can, pay a professional and learn as much as you can during your consultation. Invest in one meeting so you can gain some tools that can make changes that will give you the help to carry on.

Ask yourself – How important is breastfeeding?

People say they cannot afford things and yet they spend or waste money on countless things.
For example: Fast food, music, movies, latte, netflix.
If you cannot afford to enjoy these items and afford other important items, you need to take a hard look at your budget and see what you can cut out, at least temporarily, in order to pay for much needed items.
Shelly and Kevin cut out those things so they could invest in breastfeeding help because that was so important to them.

Shelly get real personal about her health:

A few months ago, she was diagnosed with Ovarian Cancer. This came as a huge shock to Shelly and her family. This is a 6 month season of deep, hard challenges for which she has now completed 3 months of chemotherapy. She is now waiting for the next challenge. Surgery.

In hindsight, she was not feeling well for about the last 9 months, before diagnosed, but especially not for a full month before seeking medical care.

By the time she finally saw a doctor she was barely eating. She was experiencing bloating and digestive issues. She would eat small amounts and feel really full, and she felt sick when she ate. She also experienced constipation and was feeling exhausted, both of which is unusual for her. She was so bloated that she required larger underwear which she had never had to do in her whole adult life. Additionally she was having back pain and pain during intercourse. for about a year. She did not associate those things and had been struggling with those 2 things for about a year and did not connect those two things.

She focused on a clean out for the constipation. When this did not work and she was so sick and so tired and so bloated, she decided to make an appointment with her doctor. She went thinking she was probably going to be diagnosed with celiac disease because her mother has this. At the doctors office, she requested a test for celiac disease but her dr said: Let’s do an ultrasound first and see what that shows. This was in March of 2019

In August of 2018, 7 months before this drs visit is when she went to her gynecologist with all of these symptoms.
She told her: You are probably entering menopause and are experiencing the changes associated with aging.She suggested that Shelly:

cut out grains
use lubricant when having sex
start working out to strengthen her core so her back would not hurtShe did not screen her for ovarian cancer even though she had all the signs.
She missed the testing for the diagnosis.

Given this information, this was Shelly’s approach:

She went to dr who said nothing is wrong. She learned what she can do to deal with getting older. Exercise, watch what I eat and use lubrication. Shelly was compliant, nothing got better, all the while her cancer grew. She carried on with this, but finally it was affecting her daily life. Nothing she did made things better and so she finally went to see her PCP when it was greatly affecting the quality of her every day life.

What Shelly learned while getting chemotherapy:

A disgusting amount of women in the chemo room all went to their gynecologist first. It seems that their gynecologists are not educated in the signs of Ovarian Cancer. They missed the signs, so therefore, did not test for it. These women were diagnosed by other drs. they are not getting tested with catching oC , are not testing for it, it is a crime against women. Wants to become an advocate.
Going to use her public speaking skills and will teach and train them in the signs so that they don’t ignore them.

It’s a crime against women:

Gynecologists are missing the signs, they are not listening to women, they are not suggesting women get tested for it. Once Shelly is finished with her treatment, she plans on using her speaking skills to educate physicians and the public about ovarian cancer.

Ovarian cancer is the #1 gynecological killer of women.

Shelly tells us that if her Dr. had listened and done her job, 7 months earlier, they would have caught the cancer sooner. Now 7 months later, she is now in Stage 3.

What you need to know:

The average age is 60. Shelly is 45 years old and wonders if this is why her physician did not listen to her. If you are experiencing this symptoms for more than 2 weeks and they are not usual for you, seek help:

bloating, pelvic or abdominal pain, difficulty eating or feeling full with little food
urinary problems, consitipation, extreme fatigue, digestive issues, back pain
painful intercourse and change in menses.

Without knowing the signs of ovarian cancer, it might be easy for the lay person to not put together all these symptoms. It might be that another physician tells you that you are just getting older. We encourage you to know the signs, listen to your body and educate others in your life. This may not be for you, but could be information for your mothers and grandmothers.

Screening:

We have mammograms and pap smears to screen for cancer. Pap does not screen for ovarian cancer. There is no specific screening for ovarian cancer.

Tests that should be ordered:

Ultrasound
pelvic and abdominal exam- internal and external
blood test – CA-125

In August, her tests came out clean, so she thought she had the all clear and went home with the mindset that she was aging and to follow her drs suggestions and continued to try other home treatments for her issues. She did this, until nothing was working.

The majority of women do not catch ovarian until Stage 4, at which the death rate is about 78%. The outcome is not good when caught at Stage 4. We have to listen to our bodies, speak up and find the right expert.
Very much parallels my breastfeeding stories with my 4 kids.
Obviously the cancer story is a bit more dramatic, so that is how I was diagnosed.

Her ultrasound showed that she had ascites, which is a a fluid build up in the stomach.Shelly had 5# of fluid in her stomach when they removed it. When that came back, with ascites, let’s run blood test. I don’t think you have ovarian cancer because you are young, but and it came back high and he recommended her to the best gynecological oncologists in Phoenix.

Shelly does not have any tumors. She had tiny little specks that were seen from exploratory surgery and they
found 100-200 specks of cancer all throughout her abdomen. During this surgery, they burned them all
and 9 days later began chemo with a surgery in the middle. That 9 day stretch was a very, very dark time.

Did not tell anyone outside of the immediate family and very close church family for about the first 3 weeks.
She kept it private for a few weeks: How do I have cancer? She was in so much shock. So afraid. So depressed. So angry.

Shelly shares a life changing conversation with a good personal friend. She said:

I had this most powerful conversation – life changing conversation that made me reach out.
I shared my diagnosis with a personal friend. I was whining about my cancer.
I had been a stay at home for 17 years. My husband worked outside the home.
I home schooled kids at various times and when my youngest Maddie started Kindergarten, I looked at my husband and said: I am ready to do something outside the home.

Becoming a mom was a huge transition for me. I have my Masters in counseling. I never intended on having kids, but life happens. I had very strong career ambitions. I was going to take over the world, write books, very strong career ambitions. Kevin said great and I spent a couple of months brainstorming and decided to launch a book last year. I was having the time of my life. I was having so much fun.

This part of my life that I had put to sleep was awakened and I was having the timeof my life and then I got diagnosed with cancer and I was devastated and I this is what I shared with my friend.
I told her: I was having the time of my life and now I have cancer.

She said: why don’t you keep having the time of your life.

It was like a light switch went off. Suddenly I remembered everything I had learned about mental health. I had my masters in counseling. I was a therapist. I knew the power of mental choices. I have seen the research. It literally changes your health.

I know the power of positivity, faith, gratitude, joy, contentment and accepting your reality for what it is.

Her one comment – why don’t you keep having the time of your life – it was life changing.
It was like the darkness lifted, the light came on as I flipped the switch in my mind.

Not all sunshine and unicorns:

I told myself that no matter what, I am going to keep having the time of my life, because it is just a choice. From this moment forward, Shelly says that she has been open about her journey. She does have dark days.

It has been super hard, hard for her, her family, finances and hard on her body. However, because of this one comment, Shelly works hard to have the time of her life. She flipped the switch in her brain, her spirit and her heart and for the most part, about 90% of the time, she is choosing joy and faith and hope and it has made all the difference to her.

In that dark time- thoughts of her kids were significant – this is a 6 month treatment on – When you are a mom who is running the household, this is very scary. Shelly said that she was mentally in a place where she thought her life as she once knew it, was over. Perhaps not in the terminal sense that cancer was a death sentence to her physical body, but of every hope and dream that she have ever had.

When her friend made that comment, Shelly realized that cancer does not have to kill her hopes and dreams, her spirit, and her faith. faith. In fact, it has actually revealed it. She will one day write a book and call it: Cancer, the greatest gift you never wanted.

Not that if she could ever go back, would she want to have cancer, but while she is going through this journey, she is paying attention to the lifes lessons and life gifts that she has received during the process. All the core values that are super important to her, don’t have to die with this diagnosis.

I had 3 projects that I was working on, and I have put it all aside – it doesn’t have to die, j ust change, along with everything else in my life. The only thing that is dying is the cancer and I am happy to report that we are killing the cancer.