Please submit your list of medical content you would like to have avaliable. The UNC hospitals are compiling what we list.
Obviously, (or not) a gastroschisis baby does not have a pre-determined or set course of care. So all possible angles and procedures can not be listed in sequential order. But care paths, surgeries, infections, procedures and so on can.
They also suggested compiling medically specific and concise carepath stories from parents. Our Avery's Angels will list the emotional and story section of care paths and stories, these stories are to just show the different care paths that babies can have.
Another very amazing and wonderful suggestion is that parents take pictures of their gastroschisis baby/child's belly buttons. This gives a very precious picture of how variant care paths can be and what to expect.
Email your suggestions, care stories and pictures to me at meghanhall@averysangels.org
Wednesday, January 27, 2010
Monday, January 25, 2010
Meeting today!
I'm heading out early from work to meet with the hospital staff at UNC.
I'm so excited to see them again. They're amazing and even though our journey with them wasn't always the most fun, I can say that they were very capable and I trust them with the life of all of my children!
We'll be collecting information for our websites and the group has been gathering thoughts on lay out and links and so forth. I'm so excited to start seeing what Chris and Herb put together!
It's never to late to submit your imput and suggestions and concerns! We'd love to hear from you!
meghanhall@averysangels.org
I'm so excited to see them again. They're amazing and even though our journey with them wasn't always the most fun, I can say that they were very capable and I trust them with the life of all of my children!
We'll be collecting information for our websites and the group has been gathering thoughts on lay out and links and so forth. I'm so excited to start seeing what Chris and Herb put together!
It's never to late to submit your imput and suggestions and concerns! We'd love to hear from you!
meghanhall@averysangels.org
Sunday, January 24, 2010
JOIN US!
Let's get linked! Please take the challenge to get people invited. We are on the eve of posting our website and we need volunteers and help! 1 out of every 5000 in the US means you know someone who has been affected! Get the word out there!
Twitter 4gastroschisis
Facebook Pages/Causes Avery's Angels NPO
Forums forums.averysangels.org
blog angelaverysmomy.blogspot.com
Twitter 4gastroschisis
Facebook Pages/Causes Avery's Angels NPO
Forums forums.averysangels.org
blog angelaverysmomy.blogspot.com
Wednesday, January 20, 2010
Getting Involved
Hey friends-
We will soon have up a more formalized list of specific "volunteer job descriptions" (thanks to June!! She's awesome!) posted and emailed out. In the mean time I want to hear from more folks! If you have specific talents and wishes, please email me what you'd like to be part of and we can work from there.
I do need-
People for awareness/education
People who want to be parent-to-parent support
State NPO fanatics ready to start once we get setup
Grant writers
Volunteer coordinators
Medical contacts per-state
The list could go on. I want to hear about your specialties. It? Volunteer? Previous NPO work? Volunteer? Secretary? Treasurer? CPA? Legal assistant? Medical? Mother? Grandma? Grandpa? Father? Nurse? Is there a skill you can plug in any way?
We hope to have a space up to do a formal "Roll Call" and we'll have more specifics posted but be thinking and reaching out meghanhall@averysangels.org
In the meantime, the meeting is closing in on us! It's NEXT Monday the 25th. So please please post your questions/comments and concerns at forums.averysangels.org
Shortly after the meeting the content will be organized and posted on our sites!! Can't wait to get us state/national/global!
We will soon have up a more formalized list of specific "volunteer job descriptions" (thanks to June!! She's awesome!) posted and emailed out. In the mean time I want to hear from more folks! If you have specific talents and wishes, please email me what you'd like to be part of and we can work from there.
I do need-
People for awareness/education
People who want to be parent-to-parent support
State NPO fanatics ready to start once we get setup
Grant writers
Volunteer coordinators
Medical contacts per-state
The list could go on. I want to hear about your specialties. It? Volunteer? Previous NPO work? Volunteer? Secretary? Treasurer? CPA? Legal assistant? Medical? Mother? Grandma? Grandpa? Father? Nurse? Is there a skill you can plug in any way?
We hope to have a space up to do a formal "Roll Call" and we'll have more specifics posted but be thinking and reaching out meghanhall@averysangels.org
In the meantime, the meeting is closing in on us! It's NEXT Monday the 25th. So please please post your questions/comments and concerns at forums.averysangels.org
Shortly after the meeting the content will be organized and posted on our sites!! Can't wait to get us state/national/global!
Friday, January 15, 2010
COME ON! LET'S GO!
Hey friends!
I wanted to update you on several things:
1) lawyer has put together our bi-laws and NPO information, our Tax Id information, and INC info. We are just waiting for the process to get through. It will take a wee bit of time so be patient! This will help people feel more comfortable to donate. And US folks and donate upto April 15th for tax deduction!
2) Meeting on the 25th is confirmed. I'm still taking questions and concerns, things you would like to ask the medical community, things you would like to see done, etc for content for the site. The purpose of gastroschisis.org is to present information to parents and the community that is medically sound and approved. We want to take away the overwhelming scattering and plethora of information out there.
Also, with the developments that gastroschisis has made, it is no longer safe to counsel parents that the prognosis is 30-60 days in the NICU with a silo surgery. 60-80% of the babies can be in the hospital now for 60days to 4 months plus, have multiple surgeries and may return home with bells and whistles (ostomies, central lines, GI tubes and feeding aversions, etc.) We need to prepare our parents for this. They also need to make sure that discussion has been made with medical practitioners on trying to salvage as much intestine as possible for long term care and increase in survival. You probably are aware none of this is out there in one place for parents to have access too.
Mothers have expressed interest and need for pediatrician to be on board to supply information on feeding and alternative foods for babies (issues with formulas and breast milk) as well as developmental issues.
We have a lot to have the public gain access too. My hope is that eventually we gain enough info and credibility that hospitals and doctors can use the site to educate families. That's the credibility and comprehensive structure I'm after.
3) Support networks. We will need funding to help parents with NICU induced expenses (bills, medical and misc. while parents are out of work) Child care, and in the unfortunate case, funeral help. No parent should be forced to make long term arrangements that don't bring them any comfort. We will also need funding to help local chapters raise up all over the nation and globe. I want the support to be hands on and accessiable. There are up to 2-3 babies at UNC at one time going through treatment, so these parents are floating around the NICU and not even knowing that there's another person going through the same thing. Or that there are people out there that can lend an ear, support, a hand or a shoulder. I love that we have a global connection everywhere for parents to post stories, I think that's very wonderful and unites people. But I want to make it more human and provide parents with any type of support they may need therefore we need:
Volunteers for fundraising (medical research, support, general)
Volunteers to be parent-to-parent support
Volunteers to help establish medical links in each community
Volunteers to help educate and raise awareness
Volunteers to eventually help get a chapter of Averys Angels setup nationally and globally.
Spread the word. As soon as we get content and it's all been approved by the medical communities and the proper people it will be posted to gastroschisis.org and averysangels.org. We intend on updating and expanding daily. So don't think what we gather will be final!
Spread the word. One out of 5,000 babies in the US is affected by gastroschisis. My listserv should be longer and I want it to be. I want to reach out to parents from the 70s and 80s who lost their babies to provide them some support and hope that their angel has not been forgotten and great strides have been made to help in all angels honors and for all gastroschisis parent anywhere.
Don't forget our twitter @4gastroschisis, our Facebook pages/causes Avery's Angels NPO, http://forums.averysangels.org/, and my blog angelaverysmommy.blogspot.com all ways to get information on what we're about, what we've done and what we're doing now!
Love to all, have a great weekend, contact me at any time! meghanhall07@gmail.com
Love and blessings
Meg
I wanted to update you on several things:
1) lawyer has put together our bi-laws and NPO information, our Tax Id information, and INC info. We are just waiting for the process to get through. It will take a wee bit of time so be patient! This will help people feel more comfortable to donate. And US folks and donate upto April 15th for tax deduction!
2) Meeting on the 25th is confirmed. I'm still taking questions and concerns, things you would like to ask the medical community, things you would like to see done, etc for content for the site. The purpose of gastroschisis.org is to present information to parents and the community that is medically sound and approved. We want to take away the overwhelming scattering and plethora of information out there.
Also, with the developments that gastroschisis has made, it is no longer safe to counsel parents that the prognosis is 30-60 days in the NICU with a silo surgery. 60-80% of the babies can be in the hospital now for 60days to 4 months plus, have multiple surgeries and may return home with bells and whistles (ostomies, central lines, GI tubes and feeding aversions, etc.) We need to prepare our parents for this. They also need to make sure that discussion has been made with medical practitioners on trying to salvage as much intestine as possible for long term care and increase in survival. You probably are aware none of this is out there in one place for parents to have access too.
Mothers have expressed interest and need for pediatrician to be on board to supply information on feeding and alternative foods for babies (issues with formulas and breast milk) as well as developmental issues.
We have a lot to have the public gain access too. My hope is that eventually we gain enough info and credibility that hospitals and doctors can use the site to educate families. That's the credibility and comprehensive structure I'm after.
3) Support networks. We will need funding to help parents with NICU induced expenses (bills, medical and misc. while parents are out of work) Child care, and in the unfortunate case, funeral help. No parent should be forced to make long term arrangements that don't bring them any comfort. We will also need funding to help local chapters raise up all over the nation and globe. I want the support to be hands on and accessiable. There are up to 2-3 babies at UNC at one time going through treatment, so these parents are floating around the NICU and not even knowing that there's another person going through the same thing. Or that there are people out there that can lend an ear, support, a hand or a shoulder. I love that we have a global connection everywhere for parents to post stories, I think that's very wonderful and unites people. But I want to make it more human and provide parents with any type of support they may need therefore we need:
Volunteers for fundraising (medical research, support, general)
Volunteers to be parent-to-parent support
Volunteers to help establish medical links in each community
Volunteers to help educate and raise awareness
Volunteers to eventually help get a chapter of Averys Angels setup nationally and globally.
Spread the word. As soon as we get content and it's all been approved by the medical communities and the proper people it will be posted to gastroschisis.org and averysangels.org. We intend on updating and expanding daily. So don't think what we gather will be final!
Spread the word. One out of 5,000 babies in the US is affected by gastroschisis. My listserv should be longer and I want it to be. I want to reach out to parents from the 70s and 80s who lost their babies to provide them some support and hope that their angel has not been forgotten and great strides have been made to help in all angels honors and for all gastroschisis parent anywhere.
Don't forget our twitter @4gastroschisis, our Facebook pages/causes Avery's Angels NPO, http://forums.averysangels.org/, and my blog angelaverysmommy.blogspot.com all ways to get information on what we're about, what we've done and what we're doing now!
Love to all, have a great weekend, contact me at any time! meghanhall07@gmail.com
Love and blessings
Meg
Tuesday, January 12, 2010
What we need help with NOW
What we need help with now is several areas:
People who will be interested in starting the outreach/support/awareness groups in each state once we get the NPO filed for in NC it will be much easier for us to do this. (Our plans are to start after NC in CA)
People who can volunteer time for support.
People who have connections to medical facilities by state with gastroschisis experience. (The gastroschisis.org site will have a comprehensive map of hospitals and doctors offices with experience in these cases. We need to be making those connections now also for support.)
Any information on places and doctors doing research into causes. Lots are doing research into repair.
State listing for Family Support Networks and connections to (the one in NC will be training all of our parent-to-parent support volunteers. I'd like to have this same personal training offered in some shape or form per state.)
All of your gastroschisis stories, information, pictures.
Fundraising ideas. Funds.
Questions, comments and concerns.
Please email me or post on the forum http://forums.averysangels.org or email me directly at meghanhall@averysangels.org or info@averysangels.org
People who will be interested in starting the outreach/support/awareness groups in each state once we get the NPO filed for in NC it will be much easier for us to do this. (Our plans are to start after NC in CA)
People who can volunteer time for support.
People who have connections to medical facilities by state with gastroschisis experience. (The gastroschisis.org site will have a comprehensive map of hospitals and doctors offices with experience in these cases. We need to be making those connections now also for support.)
Any information on places and doctors doing research into causes. Lots are doing research into repair.
State listing for Family Support Networks and connections to (the one in NC will be training all of our parent-to-parent support volunteers. I'd like to have this same personal training offered in some shape or form per state.)
All of your gastroschisis stories, information, pictures.
Fundraising ideas. Funds.
Questions, comments and concerns.
Please email me or post on the forum http://forums.averysangels.org or email me directly at meghanhall@averysangels.org or info@averysangels.org
Forum!
We have a forum now to post questions/concerns and suggestions. You can do so for our general mission and progress or also medical questions for me to shuffle through to the Jan 25th meeting at UNC Hospitals.
http://forums.averysangels.org
Again the meeting is on Jan. 25th with Dr. Helmrath pediatric surgeon, Dr. Marshall attending neo-natologist, the director of large donations Cutler Andrews, the OBGYN coordinator for high-risk pregnancies Maya Lindley, Dr. Helmrath's pediatric surgery nurse practitioner and the president elect of APSNA (American Pediatric Surgery Nurses Association) Lynne Farber, Tara Bristol director of the March of Dimes at UNC Hospitals at UNC Hospitals. I plan on discussing content for the site and collecting their thoughts on the direction we need to be heading, collecting resources, basically picking the brains of everyone who is deep into the care and current research of gastroschisis.
I will be taking any questions anyone else may have to them as well as well as your thoughts on the medical poriton of the site which again will be gastroschisis.org Please either post them on the forum or email me directly at meghanhall@averysangels.org or info@averysangels.org
http://forums.averysangels.org
Again the meeting is on Jan. 25th with Dr. Helmrath pediatric surgeon, Dr. Marshall attending neo-natologist, the director of large donations Cutler Andrews, the OBGYN coordinator for high-risk pregnancies Maya Lindley, Dr. Helmrath's pediatric surgery nurse practitioner and the president elect of APSNA (American Pediatric Surgery Nurses Association) Lynne Farber, Tara Bristol director of the March of Dimes at UNC Hospitals at UNC Hospitals. I plan on discussing content for the site and collecting their thoughts on the direction we need to be heading, collecting resources, basically picking the brains of everyone who is deep into the care and current research of gastroschisis.
I will be taking any questions anyone else may have to them as well as well as your thoughts on the medical poriton of the site which again will be gastroschisis.org Please either post them on the forum or email me directly at meghanhall@averysangels.org or info@averysangels.org
Thursday, January 7, 2010
Wonderful open opportunity and how to get involved now!
Dear friends-
I have a scheduled meeting with Dr. Helmrath pediatric surgeon, Dr. Marshall attending neo-natologist, the director of large donations Cutler Andrews, the OBGYN coordinator for high-risk pregnancies Maya Lindley, Dr. Helmrath's pediatric surgery nurse practitioner and the president elect of APSNA (American Pediatric Surgery Nurses Association) Lynne Farber, Tara Bristol director of the March of Dimes at UNC Hospitals on January 25th. I plan on discussing content for the site and collecting their thoughts on the direction we need to be heading, collecting resources, basically picking the brains of everyone who is deep into the care and current research of gastroschisis.
Dr. Helmrath, if I haven't already told you, receives 5 million a year from the government in grants to study gastrointestinal repair. It goes without saying this research is central to gastroschisis care and patients. Dr. Helmrath also performs the bulk of gastroschisis surgeries here at UNC Hospitals which currently sees the highest number of gastroschisis patients in the country right now, between 50-100 babies a year. If there is anyone to ask it would be him. Please please, I'm opening up this opportunity to anyone who needs questions asked or would like to request specific information or resources from him.
I want you all to compile lists of things you may want me to ask or have covered at the meeting. It is very rare that I can collect this particular group of people together in one room. So I want it to be as thorough as possible. Spread the word amongst your friends and groups so we can compile and sort through all that needs to be. I think the next time I will be able to do this is sometime in March/April. Please email me your comments/questions/suggestions/concerns at meghanhall07@gmail.com
The Family Support Network of NC has generously offered to train all of our NC volunteers to able to provide parent to parent support. I am hoping to go through the training in February or March. It is also my intention of partnering with them to see what we can set up for this training to be accessible to others in other states. If you would like to be a part of this or want more information please contact me at meghanhall07@gmail.com ASAP!
This is our progress so far. I am desperate to get ahold of some of you so in your spare time please contact me, any time of day or night via email again at meghanhall07@gmail.com
Love to all I'm so excited about our progress!
I have a scheduled meeting with Dr. Helmrath pediatric surgeon, Dr. Marshall attending neo-natologist, the director of large donations Cutler Andrews, the OBGYN coordinator for high-risk pregnancies Maya Lindley, Dr. Helmrath's pediatric surgery nurse practitioner and the president elect of APSNA (American Pediatric Surgery Nurses Association) Lynne Farber, Tara Bristol director of the March of Dimes at UNC Hospitals on January 25th. I plan on discussing content for the site and collecting their thoughts on the direction we need to be heading, collecting resources, basically picking the brains of everyone who is deep into the care and current research of gastroschisis.
Dr. Helmrath, if I haven't already told you, receives 5 million a year from the government in grants to study gastrointestinal repair. It goes without saying this research is central to gastroschisis care and patients. Dr. Helmrath also performs the bulk of gastroschisis surgeries here at UNC Hospitals which currently sees the highest number of gastroschisis patients in the country right now, between 50-100 babies a year. If there is anyone to ask it would be him. Please please, I'm opening up this opportunity to anyone who needs questions asked or would like to request specific information or resources from him.
I want you all to compile lists of things you may want me to ask or have covered at the meeting. It is very rare that I can collect this particular group of people together in one room. So I want it to be as thorough as possible. Spread the word amongst your friends and groups so we can compile and sort through all that needs to be. I think the next time I will be able to do this is sometime in March/April. Please email me your comments/questions/suggestions/concerns at meghanhall07@gmail.com
The Family Support Network of NC has generously offered to train all of our NC volunteers to able to provide parent to parent support. I am hoping to go through the training in February or March. It is also my intention of partnering with them to see what we can set up for this training to be accessible to others in other states. If you would like to be a part of this or want more information please contact me at meghanhall07@gmail.com ASAP!
This is our progress so far. I am desperate to get ahold of some of you so in your spare time please contact me, any time of day or night via email again at meghanhall07@gmail.com
Love to all I'm so excited about our progress!
Tuesday, January 5, 2010
Plans and purpose of Avery's Angels and averysangels.org
Avery's Angels will be the NPO supporting, funding and backing gastroschisis.org. It will also be the site for a complete library of support resources. Not only will families be able to post pictures and stories, we are going to link you with parents in your state, in your area so that you have someone to call, talk to, email, touch, meet with. There will be a support system that isn't just purely web-based. You will have someone to meet you in the hospital and vent to, call for, seek help or just be available.
The site and NPO will help get Avery Angels established for all states and eventually nations for support networking. There will be places to go for counseling, group sessions, how to get financial support for traveling/working parents, care for parents with children, grief counseling, help with any funeral arrangements, case workers/counselors/facilities sensitive and familiar with cases, breast feeding support, all of it. It's going to be a library for any type of support.
I have contacted the Family Support Group of NC and will be getting trained to be a support parent through their services. They have generously offered to train any of our NC parents for the same purposes. I plan on asking how to branch this out nationally for our other support/Avery's Angels.
Avery's Angels will provide support in all forms: fiscally, emotionally, however any way we can provide help we will. The two sites will be linked gastroschisis.org and averysangels.org, each with it's distinct purpose, one medical support in all forms and the other family, financial and emotional support.
It's a huge undertaking. But it's needed. Some of you know more than others. Spread the word. We need people to become aware and help in all aspects, volunteers, potential pioneers for states to have their own Avery's Angels, fundraising, awareness. I want to hear from parents and support teams now on what they need, what they need us to be considering as we get the networks started, as we lay a foundation.
I'm so excited. I'm so happy, I have been so blessed. Everyone who has helped and pushed us to this point, I am overwhelmed.
I can only say:
Thank you.
The site and NPO will help get Avery Angels established for all states and eventually nations for support networking. There will be places to go for counseling, group sessions, how to get financial support for traveling/working parents, care for parents with children, grief counseling, help with any funeral arrangements, case workers/counselors/facilities sensitive and familiar with cases, breast feeding support, all of it. It's going to be a library for any type of support.
I have contacted the Family Support Group of NC and will be getting trained to be a support parent through their services. They have generously offered to train any of our NC parents for the same purposes. I plan on asking how to branch this out nationally for our other support/Avery's Angels.
Avery's Angels will provide support in all forms: fiscally, emotionally, however any way we can provide help we will. The two sites will be linked gastroschisis.org and averysangels.org, each with it's distinct purpose, one medical support in all forms and the other family, financial and emotional support.
It's a huge undertaking. But it's needed. Some of you know more than others. Spread the word. We need people to become aware and help in all aspects, volunteers, potential pioneers for states to have their own Avery's Angels, fundraising, awareness. I want to hear from parents and support teams now on what they need, what they need us to be considering as we get the networks started, as we lay a foundation.
I'm so excited. I'm so happy, I have been so blessed. Everyone who has helped and pushed us to this point, I am overwhelmed.
I can only say:
Thank you.
GASTOSCHISIS.ORG IS NO LONGER A DREAM!
This morning, thanks to the tireless efforts and generosity of Herb Ritcher we have officially acquired gastroschisis.org
Here is the why and purpose of of gastroschisis.org:
Currently our babies are under sub pages of hospital sites. There are plenty of support groups and places to post pictures and stories but when you get the diagnosis and you google the disease for information all that will pop up is a definition and that it will be a 30-60 day stay in the hospital with a silo. No mention of the reasons why, research, pre-natal care paths, neo-natal care paths that most commonly occure, resources and information for all stages of gastroschisis.
There is just nothing comprehensive and definitive that you hang your hat on. There is nothing to give any of our parents any peace, any sense of control or any sense of comfort medically speaking. There's no site to send your friends and family to when they ask and the information your practitioner will have to provide to you will also be very limited.
gastroschisis.org will be 100% medically comprehensive for all stages of gastroschisis and include information on research and development from accredited medical staff. No more searching and wondering "if;" is this site credible? Where can I find more information? What's going on? What can I expect? One complete comprehensive site for education, awareness and medical support for all stages of gastroschisis, pre, neo and home/angel bound.
You no longer will have parents "learning as they go" or medical staff the same apparent disconnect between one facility to the next. This site will branch out and provide communication between hospitals and medical communities to not only unit families but unite the gastroschisis medical community.
In addition and for the peace of all families, there will be resources on research and development and a place to donate to see that progress is made in all aspects of the disease: repair, causes and prevention.
Herb and his family have blessed us tremendously with this gift. We will be able to have full control over the site in 60 days. In the meantime we will be posting information as it is collected on gastroschisisresearch.org, then both sites will be linked. In that 60 day time I will be collecting the information from videos to research and information on all things medically gastroschisis from UNC Hospitals and working on the skeleton structure of the site with our volunteers and support. I need input and requests from families.
I need the word to spread that information is coming. Pass along our twitter (4gastroschisis) our facebook (Avery's Angels NPO) and my email to one and all (meghanhall07@gmail.com) We will need much fundraising to help our families. GOD has worked in all those who have gotten this project this far.
I am so overwhelmed by where we are today as opposed to when I first started dreaming.
Thank you all. I can't say more.
Thank you.
Here is the why and purpose of of gastroschisis.org:
Currently our babies are under sub pages of hospital sites. There are plenty of support groups and places to post pictures and stories but when you get the diagnosis and you google the disease for information all that will pop up is a definition and that it will be a 30-60 day stay in the hospital with a silo. No mention of the reasons why, research, pre-natal care paths, neo-natal care paths that most commonly occure, resources and information for all stages of gastroschisis.
There is just nothing comprehensive and definitive that you hang your hat on. There is nothing to give any of our parents any peace, any sense of control or any sense of comfort medically speaking. There's no site to send your friends and family to when they ask and the information your practitioner will have to provide to you will also be very limited.
gastroschisis.org will be 100% medically comprehensive for all stages of gastroschisis and include information on research and development from accredited medical staff. No more searching and wondering "if;" is this site credible? Where can I find more information? What's going on? What can I expect? One complete comprehensive site for education, awareness and medical support for all stages of gastroschisis, pre, neo and home/angel bound.
You no longer will have parents "learning as they go" or medical staff the same apparent disconnect between one facility to the next. This site will branch out and provide communication between hospitals and medical communities to not only unit families but unite the gastroschisis medical community.
In addition and for the peace of all families, there will be resources on research and development and a place to donate to see that progress is made in all aspects of the disease: repair, causes and prevention.
Herb and his family have blessed us tremendously with this gift. We will be able to have full control over the site in 60 days. In the meantime we will be posting information as it is collected on gastroschisisresearch.org, then both sites will be linked. In that 60 day time I will be collecting the information from videos to research and information on all things medically gastroschisis from UNC Hospitals and working on the skeleton structure of the site with our volunteers and support. I need input and requests from families.
I need the word to spread that information is coming. Pass along our twitter (4gastroschisis) our facebook (Avery's Angels NPO) and my email to one and all (meghanhall07@gmail.com) We will need much fundraising to help our families. GOD has worked in all those who have gotten this project this far.
I am so overwhelmed by where we are today as opposed to when I first started dreaming.
Thank you all. I can't say more.
Thank you.
Gastroschisis carepaths/info/why we need gastroschisis.org
Let me let you know why:
Gastroschisis is diagnosed at month 4-5 of pregnancy. For the next 4-5 months families deal with a barrage of scattered information and are put on the "high-risk pregnancy" unit and facility at their chosen hospital. During the last 2-3 months mothers must attended once a week and then twice a week ultrasounds to check for fetal development. During this time they are checking the baby for any complications they maybe able to determine from the gastroschisis and viability, if the baby is taking "practice breaths" in the womb. This lets the medical team know how to balance the baby and mother's birth date. Some moms will not be able to carry their babies to term as gastroschisis babies are notorious for dropping off the growth charts early (around 32 weeks) and coming early, thus battling both premi issues and gastroschisis issues. Some gastroschisis babies carry to full term and run the risk of being born still. So the team will balance the baby's development and assess if after 32 weeks they need to induce labor or wait.
The medical team will wait as long as they can but not too long to make sure the baby has little to no preemie issues in addition to the gastroschisis.
Once the baby is born (preferably natural, less stress on both the baby and mom) they are immediately whisked in to a NICU for surgery and to develop a care path. All gastroschisis babies care paths are unique and different. Some may have a silo, some not, some may be fully ready to go home in 30 days while some may need multiple surgeries and can stay in the NICU for several months and up to a year. Some may return home with little to no special "hook ups" while others may come home with many different "hook ups" from GI tubes to central borowiak lines and ostomies. Whatever the case, as you research, you will find that currently there are no medical sites that list all possible care paths. Most sites are generic and state the medical definition and the "best case scenario" which is silo and 30-60 days in a NICU.
If you have just found this blog let me reassure you. The success rate for gastroschisis babies is considerably better than it was 10-20 years ago. You will be at a 80-90% success rate. But you MUST be aware that there is no pre-determined path for how long you may be in the NICU or confronted with issues until your baby is born.
We all hope that our parents will be able to return home in 30-60 days. But please be aware that most gastroschisis cases can take up to 100-200 days in a NICU.
After surgeries have been completed and sometimes even while they're assessing your baby's case they watching for poop. Once your baby has reassured your medical team that all functions in the bowels are working and the stomach enzymes are passing through they will start the feeding process.No matter how much faith you have in your baby's ability to eat, (and I was convinced of this too with Avery) they will experience feeding aversions because they have been on a PCCC line since birth (a PCCC line is a central line run through any number of points in a baby's body, they can be placed through the foot, arms, or neck that runs nutrients directly to the baby's heart. A baby that has to stay on PCCC or central feedings for a longer time will seem jaundicey as the liver is not fully functioning and will start to break down a little bit.) I encourage you to speak to your medical teams about speech therapists early and get comfortable knowing them and them knowing your baby so when you do get to feeding stage they are ready to help should your baby not be taking to bottle/breast feeding quickly.
Now it may turn out that even though they think it's time to feed your baby's plumbing may not be ready. So even if you get here this may not be it. In Avery's case he was throwing all of his feeds up and couldn't make it past 10mls. This is also normal. It means something in the "plumbing" still isn't right and there maybe need for another operation.
You should also know that they must wait 6-8 weeks between every operation to see how the body repairs and if the operation was successful. So you may have one operation, need to wait 6 weeks and need another, then you wait another 6-8 weeks. Patience is key in all gastroschisis babies. You will watch other preemie babies born and taken home in days, other babies in and out but don't give up. Your time is coming. Be patient and sit on your hands as best you can giving your child all the opportunities to heal and show you and his/her doctors what he/she needs.You're tell-tell sign that you are ready to go home will be when the PCCC line is removed or they set you up for a central borowiak for home care. Even still you won't completely be out of the dark. You need to monitor your baby's feedings closely. This will be an indication of any infections or irregularities in the bowels. All medical faculties will be ready to see your child and expecting your phone call so any suspicions go ahead and call your medical staff.
This is just a brief synopsis of what you can potentially expect. There is tons more information about gastroschisis and care paths and this is why we have worked so hard to acquire gastroschisis.org.
Currently our babies are under sub pages of hospital sites. There are plenty of support groups and places to post pictures and stories but when you get the diagnosis and you google the disease for information all that will pop up is a definition and that it will be a 30-60 day stay in the hospital with a silo. No mention of the reasons why, research, pre-natal care paths, neo-natal care paths that most commonly occur, resources and information for all stages of gastroschisis. There is just nothing comprehensive and definitive that you hang your hat on. There is nothing to give any of our parents any peace, any sense of control or any sense of comfort.
gastroschisis.org will be 100% medically comprehensive for all stages of gastroschisis and include information on research and development from accredited medical staff. No more searching and wondering "if," one site for education, awareness and medical support.
You no longer will have parents "learning as they go" or medical staff the same apparent disconnect between one facility to the next. This site will branch out and provide communication between hospitals and medical communities to not only unit families but unite the gastroschisis medical community.
Gastroschisis is diagnosed at month 4-5 of pregnancy. For the next 4-5 months families deal with a barrage of scattered information and are put on the "high-risk pregnancy" unit and facility at their chosen hospital. During the last 2-3 months mothers must attended once a week and then twice a week ultrasounds to check for fetal development. During this time they are checking the baby for any complications they maybe able to determine from the gastroschisis and viability, if the baby is taking "practice breaths" in the womb. This lets the medical team know how to balance the baby and mother's birth date. Some moms will not be able to carry their babies to term as gastroschisis babies are notorious for dropping off the growth charts early (around 32 weeks) and coming early, thus battling both premi issues and gastroschisis issues. Some gastroschisis babies carry to full term and run the risk of being born still. So the team will balance the baby's development and assess if after 32 weeks they need to induce labor or wait.
The medical team will wait as long as they can but not too long to make sure the baby has little to no preemie issues in addition to the gastroschisis.
Once the baby is born (preferably natural, less stress on both the baby and mom) they are immediately whisked in to a NICU for surgery and to develop a care path. All gastroschisis babies care paths are unique and different. Some may have a silo, some not, some may be fully ready to go home in 30 days while some may need multiple surgeries and can stay in the NICU for several months and up to a year. Some may return home with little to no special "hook ups" while others may come home with many different "hook ups" from GI tubes to central borowiak lines and ostomies. Whatever the case, as you research, you will find that currently there are no medical sites that list all possible care paths. Most sites are generic and state the medical definition and the "best case scenario" which is silo and 30-60 days in a NICU.
If you have just found this blog let me reassure you. The success rate for gastroschisis babies is considerably better than it was 10-20 years ago. You will be at a 80-90% success rate. But you MUST be aware that there is no pre-determined path for how long you may be in the NICU or confronted with issues until your baby is born.
We all hope that our parents will be able to return home in 30-60 days. But please be aware that most gastroschisis cases can take up to 100-200 days in a NICU.
After surgeries have been completed and sometimes even while they're assessing your baby's case they watching for poop. Once your baby has reassured your medical team that all functions in the bowels are working and the stomach enzymes are passing through they will start the feeding process.No matter how much faith you have in your baby's ability to eat, (and I was convinced of this too with Avery) they will experience feeding aversions because they have been on a PCCC line since birth (a PCCC line is a central line run through any number of points in a baby's body, they can be placed through the foot, arms, or neck that runs nutrients directly to the baby's heart. A baby that has to stay on PCCC or central feedings for a longer time will seem jaundicey as the liver is not fully functioning and will start to break down a little bit.) I encourage you to speak to your medical teams about speech therapists early and get comfortable knowing them and them knowing your baby so when you do get to feeding stage they are ready to help should your baby not be taking to bottle/breast feeding quickly.
Now it may turn out that even though they think it's time to feed your baby's plumbing may not be ready. So even if you get here this may not be it. In Avery's case he was throwing all of his feeds up and couldn't make it past 10mls. This is also normal. It means something in the "plumbing" still isn't right and there maybe need for another operation.
You should also know that they must wait 6-8 weeks between every operation to see how the body repairs and if the operation was successful. So you may have one operation, need to wait 6 weeks and need another, then you wait another 6-8 weeks. Patience is key in all gastroschisis babies. You will watch other preemie babies born and taken home in days, other babies in and out but don't give up. Your time is coming. Be patient and sit on your hands as best you can giving your child all the opportunities to heal and show you and his/her doctors what he/she needs.You're tell-tell sign that you are ready to go home will be when the PCCC line is removed or they set you up for a central borowiak for home care. Even still you won't completely be out of the dark. You need to monitor your baby's feedings closely. This will be an indication of any infections or irregularities in the bowels. All medical faculties will be ready to see your child and expecting your phone call so any suspicions go ahead and call your medical staff.
This is just a brief synopsis of what you can potentially expect. There is tons more information about gastroschisis and care paths and this is why we have worked so hard to acquire gastroschisis.org.
Currently our babies are under sub pages of hospital sites. There are plenty of support groups and places to post pictures and stories but when you get the diagnosis and you google the disease for information all that will pop up is a definition and that it will be a 30-60 day stay in the hospital with a silo. No mention of the reasons why, research, pre-natal care paths, neo-natal care paths that most commonly occur, resources and information for all stages of gastroschisis. There is just nothing comprehensive and definitive that you hang your hat on. There is nothing to give any of our parents any peace, any sense of control or any sense of comfort.
gastroschisis.org will be 100% medically comprehensive for all stages of gastroschisis and include information on research and development from accredited medical staff. No more searching and wondering "if," one site for education, awareness and medical support.
You no longer will have parents "learning as they go" or medical staff the same apparent disconnect between one facility to the next. This site will branch out and provide communication between hospitals and medical communities to not only unit families but unite the gastroschisis medical community.
Monday, January 4, 2010
Push now!!
We only need $350 for our domain name thanks to the timeless and enduring work of Herb Ritcher!!! Please contact me on how to donate and helping us unite our thousands of families here in NC, our nation and the globe!! We are well on our way to providing the most comprhensive medical information and support for our families!!!
WE CAN DO THIS!!!
- Contact me at meghanhall07@gmail.com to get involved or more info about Avery's Angels
WE CAN DO THIS!!!
- Contact me at meghanhall07@gmail.com to get involved or more info about Avery's Angels
MUCH new hope!!
Dear friends!
We have had just a wealth of help and support come in for the New Year. We have officially acquire, thanks to Herb Richters, Grandfather of Angel Amara from CA, the domain averysangels.org! This will be our support site for families. There will be a wealth of information about families in your area who can supply support for gastroschisis as well as professional support and other resources!
I meet with the medical staff at UNC the end of this month for content for the medical portion of the site. There will be a ton of information that we collect for all stages of gastroschisis from diagnosis to care paths to home resources. Everything you can possibly ever need will be posted on the site.
We have a Twitter account- 4gastroschisis we have Facebook pages and causes: Avery's Angels NPO. Look them up! Join them and spread the word!!! I'm looking to create a list serve for families to know our progress and get ideas and information and support!
We also have a bank account through Wachovia informally until we are officially registered! It had to be filed under my name but the title is Meghan Hall Avery's Angels. We will be able to post a link to donate directly online.
We still desperately need the following:
$500 for our domain name gastroschisis.org PLEASE donate to this cause! It is so so so needed! We have the medical community ready to post information that will be a comprehensive site for our families to know what to expect at all stages of gastroschisis as well as medical support.
Families to join and support us! please pass along our information! We can do so much to support families right now! I want to start a listserv to get peoples information, what they would like to see us be able to do and supply to them, any suggestions. Get the word out!
A CPA- as I have stated before, our funds are very very limited but we are offering a permanent position on our board. I need someone who is committed to helping and serving the families here and all over our nation and world.
$2000+ is our fund raising goal for the first 3 months (so by March.) That will go towards the purchase of our domain name, all of our legal and fiscal responsibilities as a NPO and filing for NPO status as well as nationally! We also will begin to provide care and support to families who are currently undergoing gastroschisis repair at any major hospital. Hopefully we can get our paperwork through and start getting our support to families everywhere. Through just our recent work we are realizing how global this effort needs to be. As I have said, Angel Amara's family is on the west coast and have contacted me. As soon as our NC chapter is up for Avery's Angels, I have to start sending Herb support to start a chapter in CA, and as soon as our website starts linking our large community, the need will spread fast.
Donating a Laptop-this sounds funny, but I don't currently have a home computer. I have been emailing, posting and searching all from my cell phone. My college computer has died and we currently aren't in a position to run out and spend $300-$1000 on a laptop. So if you'd like to donate a working one with wireless Internet capabilities, I would be deeply indebted.
There's no limit to what we can do! We're building a foundation to be here for as long as the disease exists. I won't stop. I buried my son but I won't bury his hope.....
I do plan on sending receipts or official thank yous once we have our NPO status. That way if you can't claim your donation officially this tax season (and you have until April 15th to file and so do we!) you can claim it next go 'round. I have been trying to write thank you's to all donations currently.
Immediate goal is getting the paper work through and the domain! Contact me any time 24-7 to help!
meghanhall07@gmail.com
We have had just a wealth of help and support come in for the New Year. We have officially acquire, thanks to Herb Richters, Grandfather of Angel Amara from CA, the domain averysangels.org! This will be our support site for families. There will be a wealth of information about families in your area who can supply support for gastroschisis as well as professional support and other resources!
I meet with the medical staff at UNC the end of this month for content for the medical portion of the site. There will be a ton of information that we collect for all stages of gastroschisis from diagnosis to care paths to home resources. Everything you can possibly ever need will be posted on the site.
We have a Twitter account- 4gastroschisis we have Facebook pages and causes: Avery's Angels NPO. Look them up! Join them and spread the word!!! I'm looking to create a list serve for families to know our progress and get ideas and information and support!
We also have a bank account through Wachovia informally until we are officially registered! It had to be filed under my name but the title is Meghan Hall Avery's Angels. We will be able to post a link to donate directly online.
We still desperately need the following:
$500 for our domain name gastroschisis.org PLEASE donate to this cause! It is so so so needed! We have the medical community ready to post information that will be a comprehensive site for our families to know what to expect at all stages of gastroschisis as well as medical support.
Families to join and support us! please pass along our information! We can do so much to support families right now! I want to start a listserv to get peoples information, what they would like to see us be able to do and supply to them, any suggestions. Get the word out!
A CPA- as I have stated before, our funds are very very limited but we are offering a permanent position on our board. I need someone who is committed to helping and serving the families here and all over our nation and world.
$2000+ is our fund raising goal for the first 3 months (so by March.) That will go towards the purchase of our domain name, all of our legal and fiscal responsibilities as a NPO and filing for NPO status as well as nationally! We also will begin to provide care and support to families who are currently undergoing gastroschisis repair at any major hospital. Hopefully we can get our paperwork through and start getting our support to families everywhere. Through just our recent work we are realizing how global this effort needs to be. As I have said, Angel Amara's family is on the west coast and have contacted me. As soon as our NC chapter is up for Avery's Angels, I have to start sending Herb support to start a chapter in CA, and as soon as our website starts linking our large community, the need will spread fast.
Donating a Laptop-this sounds funny, but I don't currently have a home computer. I have been emailing, posting and searching all from my cell phone. My college computer has died and we currently aren't in a position to run out and spend $300-$1000 on a laptop. So if you'd like to donate a working one with wireless Internet capabilities, I would be deeply indebted.
There's no limit to what we can do! We're building a foundation to be here for as long as the disease exists. I won't stop. I buried my son but I won't bury his hope.....
I do plan on sending receipts or official thank yous once we have our NPO status. That way if you can't claim your donation officially this tax season (and you have until April 15th to file and so do we!) you can claim it next go 'round. I have been trying to write thank you's to all donations currently.
Immediate goal is getting the paper work through and the domain! Contact me any time 24-7 to help!
meghanhall07@gmail.com
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