Hyperemesis Gravidarum PEG Tube Protocol that Saved Our Babies Life!

Happy birthday to our precious Hyperemesis Gravidarum (HG) Survivor, Eragon! You completed our family 3 years ago as we stood our ground and fought for the best treatment possible to save your life and mine. We were informed that we should terminate you but we believed that there were options that we were not aware of and thank goodness for the HER Foundation website and all of the wonderful information that was available, so Daddy and I were able to become educated about HG and discovered the best procedures available; because of this we were more able to advocate for you and I. We love you and are so glad that Mommy could use the PEG Tube and the amazing protocol that aided in saving your life :) We have decided to post the amazing protocol that we used to save your life in hopes other families can also benefit. It is our hope that this protocol will help other women and their families do their best to find what works as quickly as possible. We all know that this is trial and error and as a team we can develop a system that will save lives.

I had the PEG tube placed in May of 2009 and was on Glytrol feedings 2000 calories a day. The hospital originally had me set my pump at 85 mL's an hour and that meant in order to get all of my feedings in I couldn't be off of my kangaroo pump even to do my medications. The other problem was there was no way to get proper hydration. In the beginning I was going to the hospital for fluids almost daily. I didn't have an OB until I was over 20 weeks pregnant because I was fighting the insurance. They wanted me to go to UC Irvine which is too far so I fought them. They sent me denial letters stating that HG does not cause death. So, I sent them my daughter Ayden Rae's Death Certificate and told them no matter what they said I was going to Loma Linda where they knew me and my condition.

I was able to see Dr. Block at Loma Linda :) He is really great! What we did really worked and my baby was above average in size and growth. The doctors are so surprised. This was by far my best pregnancy. The PEG J/G tube was the best choice they could have made for me and my baby. I had a PICC line in my 7th pregnancy and all of my organs started failing and my blood sugars went as high as 1422. I knew I couldn't do that again.

I don't want to overwhelm you so I am just going to give you a list of what we did!

1) PEG Tube placement. With J & G Tubes.

2) Alkaline water ONLY!!!!

3) We have a bedside drain bag connected to my G tube 24/7 and it is draining my G! I had such horrible heartburn so they wanted to just see what would happen when they connected it and they were amazed at how much Crap came out and decided to leave it. It really has helped.

4) Glytrol Hyperglycemia formula 2000 calories per day.

5) I figured out that I needed to speed up my pump to 180 mL's per hour; in order to get proper nutrition and hydration. My husband and I took a lot of my care into our own hands because we knew we had no choice. This was my last pregnancy and we were determined we were going to be successful. Speeding the pump up to 180 mL's an hour allowed me to do 6 hours of feeding and then 6 hours of water, 6 hours of feeding and again 6 hours of water. 1000 mLs of each every 6 hours.

Once we did the above I felt so much better. I was also not taking daily trips to the hospital for hydration. That was a blessing in itself.

6) Once we figured out the food and Hydration issues; we then decided that each time we would change from food to water we would then also do my medicine and flushes. Which meant no extra time off the pump and actually I would be getting more fluids at the same time.

7) We setup a medicine station in the bathroom. We got a pill crusher and were able to crush any pill that can dissolve in water and flush it through my J tube. With the liquid Zofran the insurance would only approve a few days at a time so we had to figure something out so my husband was not always at the pharmacy getting my medications. It was just better to crush the pills.

8) Medicine Schedule

a) 5am 2.5 mL sertraline, 12.5 mL Hydroxyzine, 8mg Zofran crushed, 5mL Prevacid.

b) 11am 12.5 mL Hydroxyzine, 8mg Zofran crushed, 5mL Prevacid, 30mLs Bazi Liquid Vitamin, and 8oz cranberry juice.

c) 5pm 12.5 mL Hydroxyzine, 8mg Zofran crushed, 5mL Prevacid and 30mLs Bazi Liquid Vitamin.

d) 11pm 12.5 mL Hydroxyzine, 8mg Zofran crushed, 5mL Prevacid, and 10mg Ambien crushed.

Together we will make a difference and save lives worldwide so families worldwide will no longer suffer from Hyperemesis Gravidarum (HG)



Thanks,

Vanessa Pack & Family

Ayden Rae Foundation http://www.aydenraefoundation.org/hyperemesis-gravidarum-petition/

Hyperemesis Gravidarum Support Worldwide

If anyone you know is seeking support for Hyperemesis Gravidarum (HG) please refer them to the Ayden Rae Foundation at www.aydenraefoundation.org, Pregnancy Sickness Support http://www.pregnancysicknesssupport.org.uk/ and/or Beyond Morning Sickness www.beyondmorningsickness.com so they can get the help and support they need and deserve to have a fighting chance to survive.

Kate Middleton Pregnant & Suffering with Hyperemesis Gravidarum

Find out what others are saying around the globe about Hyperemesis Gravidarum, Prince William and Kate Middleton; here at http://littlemamajama.com/2012/12/03/the-duchess-is-expecting-and-she-has-hyperemesis-gravidarum/ as one blogger and HG survivor explains. News around the world has everyone on edge about the new baby who will join the Royal Family and the health of the mother. The news about the baby came as a shock but not as much as the fact that Kate was suffering from Hyperemesis Gravidarum. There are so many questions and so much for everyone to understand as they wonder, just what Hyperemesis Gravidarum is anyway? Now is the time to become educated and spread much needed awareness to support those who suffer around the world. Please do your research before you refer to HG as nothing more than "Morning Sickness?" As so many families have suffered and many have lost their lives and the lives of their babies because of how severe HG truly is, if not properly treated and monitored. Remember HG is different for every woman and should not be classified as the same for everyone. Each case should be considered on a case by case basis and this condition is by no means rare; it has been brought to our attention that HG is about as common as Breast Cancer. 

Hyperemesis Gravidarum Awareness Month!

What are you doing to create awareness for Hyperemesis Gravidarum Awareness Month?

Hyperemesis Gravidarum Awareness Month

Hyperemesis Gravidarum Awareness Month! This Precious HG Survivor and Miracle just warms my ♥

Hyperemesis Gravidarum Awareness Month October!

Hyperemesis Gravidarum Awareness Month October!

HYPEREMESIS GRAVIDARUM AWARENESS MONTH OCTOBER

HYPEREMESIS GRAVIDARUM AWARENESS MONTH OCTOBER

HYPEREMESIS GRAVIDARUM AWARENESS MONTH OCTOBER

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HYPEREMESIS GRAVIDARUM AWARENESS MONTH OCTOBER

HYPEREMESIS GRAVIDARUM AWARENESS MONTH OCTOBER

HYPEREMESIS GRAVIDARUM AWARENESS MONTH OCTOBER

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HYPEREMESIS GRAVIDARUM AWARENESS MONTH OCTOBER

HYPEREMESIS GRAVIDARUM AWARENESS MONTH OCTOBER

HYPEREMESIS GRAVIDARUM AWARENESS MONTH OCTOBER

HYPEREMESIS GRAVIDARUM AWARENESS MONTH OCTOBER

HYPEREMESIS GRAVIDARUM AWARENESS MONTH OCTOBER

HYPEREMESIS GRAVIDARUM AWARENESS MONTH OCTOBER

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HYPEREMESIS GRAVIDARUM AWARENESS MONTH OCTOBER

Saturday Night Cruisers of Barstow California- 14th Annual Main Street USA Car Show

The 1^st Annual Ayden Rae Foundation Route 66 Run, Relay and Auto Tour 2012, is a brilliant event that will take place every September from Chicago Illinois to Santa Monica California.
The Ayden Rae Foundation Annual Route 66 Run, Relay & Auto Tour is a unique fund raising program that gives one a chance to directly support our mission of providing support for life-saving efforts in advocating and improving patient care for HG patients, education, research, and reaching populations at risk from Hyperemesis Gravidarum.

Hyperemesis Gravidarum is a devastating condition. Funding to develop screening, cures and treatment has been and continues to be woefully inadequate. We need to work together to improve awareness which in turn will hopefully lead to more research and support, and eventually a cure.

This life-changing event gives everyone a chance to celebrate the lives of people who have battled Hyperemesis Gravidarum, remember loved ones lost, and fight back against the disease while raising funds for ground breaking research and empowering women living with or surviving Hyperemesis Gravidarum.

 Today, September 8, 2012 Ayden Rae Foundation Founder & CEO Vanessa Pack and her children were able to attend and support the Saturday Night Cruisers of Barstow California- 14th Annual Main Street USA Car Show. The Saturday Night Cruisers are a local car club located in Barstow, California. This amazing event was held in Downtown Barstow on Historic Route 66. 

This event was open to everyone and this proved to be a wonderful event for all ages. The Show was open to all vehicles regardless of the year. There were Raffle Prizes, a 50/50 drawing, Snow Cones which were yummy and the whole family enjoyed such a sweet treat to calm the blistering heat. Many vendors surrounded the stunning and breathtaking cars that had been entered in this year’s 14th Annual Main Street USA Car Show. The Ayden Rae Foundation wishes to support all those who live, work and play on Route 66. Our family decided years ago in 2007, when we delivered our precious Ayden Rae Pack, who was born sleeping and lost her fight to Hyperemesis Gravidarum, that we were going to keep her memory alive by keeping Route 66 Alive. 

This event was supported by Barstow Police Department, Barstow Del Taco, and many vendors who were in attendance. Make sure you save the date for next years event and support the 15th Annual Main Street USA Car Show Event!

Hyperemesis Gravidarum Awareness Poem: God's Special Flower

Shared By: Brenda Legge

God's Special Flower

The flower was a gift kissed by God's grace.
But it did not bloom nor it's beauty unfold.

For God's own reasons it hid it's face
This world that is ours to never behold.

Not once this flower of it's beauty did sing.

Though it struggled and tried to bloom.
It knew so little of earthly things.
Its fragrance could fill no room.

But then one day God came for His prize.
For this was a flower so rare
He knew with His love its fragrance would rise
And sweeten the Heavenly air.

Now, protected by angels and under His light
The flower will grow, a joyous shadow to cast.
And in full view of His wondrous sight
This precious flower will bloom at last.

Written by Joanne Campbell

Hopefully these words will help soothe the moms and dads who have lost their precious flowers.

1st Annual Ayden Rae Foundation Route 66 Run, Relay & Auto Tour Day 1

The 1st Annual Ayden Rae Foundation Route 66 Run, Relay & Auto Tour begins in Chicago, IL on September 1, 2012 and will span the entire length of Route 66; all the way to the Route 66 Rendezvous in San Bernardino, CA on September 15, 2012 and then to the Pier in Santa Monica, CA to end our wonderful trip on Route 66 on September 16, 2012. This wonderful tour of Route 66 will have many sites and attractions along this breathtaking highway that you won’t want to miss. Please come and join us in all the fun and support our wonderful cause all at the same time.
The Ayden Rae Foundation Annual Route 66 Run, Relay & Auto Tour is a unique fund raising program that gives you a chance to directly support our mission of providing support for life-saving efforts in advocating and improving patient care for HG patients, education, research, and reaching populations at risk from Hyperemesis Gravidarum.
Hyperemesis Gravidarum is a devastating condition. Funding to develop screening, cures, and treatment has been and continues to be woefully inadequate. We need to work together to improve awareness which in turn will hopefully lead to more research and support, and eventually a cure.
This life-changing event gives everyone a chance to celebrate the lives of people who have battled Hyperemesis Gravidarum, remember loved ones lost, and fight back against the disease while raising funds for ground breaking research and empowering women living with or surviving Hyperemesis Gravidarum.
Today, the Ayden Rae Foundation begins to spread Hyperemesis Gravidarum Awareness along to entire span of Historical Route 66. This year marks to first year for the 1st Annual Ayden Rae Foundation Route 66 Run, Relay & Auto Tour, a 16 Day Guided Tour From Chicago to Santa Monica. This is going to be an amazing experience and will definitely create a great deal of education and awareness worldwide.
We kicked off the First Annual Ayden Rae Foundation Route 66 Run, Relay and Auto Tour in style by missing our flight to Chicago! But, that didn’t stop us as we were determined to catch the next flight out and we are still on track to kick off the official event tomorrow morning. This is already proving to be an exciting event : ) Those who suffer from Hyperemesis Gravidarum know first hand how things don’t always go as expected and oftentimes are forced to improvise; and our family has faced such challenges before. This event is dedicated to those who have suffered from HG, those who are suffering currently and those who will suffer in the future. We are determined to fight for a cause and cure for Hyperemesis Gravidarum.
Saturday, September 01, 2012 Day 1, Chicago to St Louis we had an amazing breakfast at Lou Mitchell’s. Next stop was Odell IL and as we approached the wonderful little town of Odell we saw a sign that said, “Welcome to Odell” followed by another sign saying, “Route 66ers” and still another sign saying, “A Small Town”, then another wonderful little sign which said, “With a Big Heart” and yet another sign saying, “Where Everybody” and the last sign said, “Is Somebody”… Therefore, all of the signs together say, “Welcome to Odell Route 66ers, a small town with a big heart where everybody is somebody. So, then we went to see the small town where everyone is somebody and found a delightful little town with a big heart for Route 66 and Route 66ers. Once we finished our adventure in Odell we traveled to the Museum in Pontiac IL, known as Pontiac Visitors Center to enjoy the wonderful museum and everything that comes with it. We were graciously invited in and enjoyed a wonderful walk back in time at the Pontiac Museum/Visitors Center. Route 66 Association of Illinois is in the process of partnering with the Ayden Rae Foundation and our Annual Route 66 Run, Relay and Auto Tour. We would also like to take a moment to thank Jim & Marty at the Pontiac Museum for all of their great ideas to improve the 2013 Ayden Rae Foundation Run, Relay & Auto Tour in the great state of Illinois. They are already actively considering several different events along the route in the great state of Illinois for the 2nd Annual Ayden Rae Foundation Route 66 Run, Relay and Auto Tour in 2013. In addition Dinner that evening was at the Ariston Cafe in Litchfield IL, Nick was our host for the evening and the service and food was great and very filling.
We are looking forward to tomorrow Day 2 of our 1st Annual Ayden Rae Foundation Route 66 Run, Relay & Auto Tour, when we head to the Chain of Rocks Bridge in St Louis MO. Tomorrow morning 7am Central Time where we will kick off the 5K Run in St. Louis. Ayden Rae Foundation Chapter Leader, Carla Covin Lowman is super excited to lead the pack in the 5K Run to create much needed awareness for Hyperemesis Gravidarum. What an amazing day, we have already created so much HG Awareness and there is still so much more to come. Stay tuned for more wonderful highlights and adventures along Route 66 as we continue our Ayden Rae Foundation 1st Annual Route 66 Run, Relay & Auto Tour.

1st Annual Ayden Rae Foundation Route 66 Run, Relay & Auto Tour Day 1

Saturday, September 01, 2012 Day 1, Chicago to St Louis we had an amazing breakfast at Lou Mitchell’s. Next stop was Odell IL and as we approached the wonderful little town of Odell we saw a sign that said, “Welcome to Odell” followed by another sign saying, “Route 66ers” and still another sign saying, “A Small Town”, then another wonderful little sign which said, “With a Big Heart” and yet another sign saying, “Where Everybody” and the last sign said, “Is Somebody”…  Therefore, all of the signs together say, “Welcome to Odell Route 66ers, a small town with a big heart where everybody is somebody. So, then we went to see the small town where everyone is somebody and found a delightful little town with a big heart for Route 66 and Route 66ers. Once we finished our adventure in Odell we traveled to the Museum in Pontiac IL, known as Pontiac Visitors Center to enjoy the wonderful museum and everything that comes with it. We were graciously invited in and enjoyed a wonderful walk back in time at the Pontiac Museum/Visitors Center.  Route 66 Association of Illinois is in the process of partnering with the Ayden Rae Foundation and our Annual Route 66 Run, Relay and Auto Tour. They are already actively considering several different events along the route in the great state of Illinois for the 2^nd Annual Ayden Rae Foundation Route 66 Run, Relay and Auto Tour in 2013. We are looking forward to tomorrow when we head to the Chain of Rocks Bridge in St Louis MO. Tomorrow morning 7am central time we will kick off the 5K Run in St. Louis. Ayden Rae Foundation Chapter Leader Carla Covin Lowman is super excited to lead the pack in the 5K Run to create much needed awareness for Hyperemesis Gravidarum. What an amazing day, we have already created so much HG Awareness and there is still so much more to come. Stay tuned for more wonderful highlights and adventures along Route 66 as we continue our Ayden Rae Foundation 1^st Annual Route 66 Run, Relay & Auto Tour.