Amazing Grace

Avery's baby Sister was born on Dec 10th 2010.

She was one month and a day early....due Jan 11th 2011. But here she is and how amazing she is.

My fears going in were obvious 1) a healthy baby. Always and forever, a healthy baby. Each passing week would mark off one paranoia and add a new one....early and late miscarriages, cord and fluid fears, chromosome fears, size and growth concerns, early labor, still birth....you name it. It was all weighing on me like a stone; one growing in my belly and the other growing on my heart and mind.

You're both scared to grow close to the life inside of you and also guilty of feeling scared to grow close to the life inside of you. You're worried you hope too soon, or you enjoy too late, you love too little or feel too much with so little guaranteed.

You feel the pressure of producing a healthy baby, all eyes on you, because all eyes fell on you when your prior had such heartbreaking issues "What did you do?" and you hear and feel in your heart "How did I fail my baby."

She kicked and I would cry, scared of her, scared for her, then wishing it was Avery, and then feeling like an awful mother for feeling all those things.

At month 3 I put in my mind that no many how many times I ran to the doctors to make them let me hear her heartbeat, there would be nothing I could do if God put my stars in alignment for something other then what I saw to be best; I couldn't stop life from happening the way that God intended it to. I stuck to it and surrendered. It didn't so much ease the fears out of my heart, or off my mind, it did take my responsibility to those worries and fears away.

And then I was worried that she would make people forget Avery. And I threw Avery projects up everywhere. I felt guilty like I was choosing or spending more time with one child and not enough on the other. Would people remember Avery? Was I spending too much time on Avery or too much on her?

She's my daughter, she has my heart as much as my son does. She's here because of my son. And they both know and will know that I love them very much. One here and one in heaven and there's nothing more then being a mommy and worrying about loving them that I need to do to prove I love them both.

And Avery can't be forgotten, because his life lives on here in how we have all changed our lives and live our lives because of him. All the movement he has stirred and put into motion in his life here and continues to do so, no, he won't ever be forgotten. His miss doesn't ever go away. I cradle my little girl and still miss my angel boy.

But my life is because of him and my life is because of her.

Did I truly enjoy the pregnancy, did I feel a glow and a precious grasp on my body? No, I was petrified of my body. Did I love the hope of my baby girl any less, no, because no matter how much I tried to distance my heart from what was happening, she was, like all babies are, alive in my heart and my life from the moment I knew she was on her way.

Doctors would ask me "so do you feel more comfortable now?" No, no I don't. I hear "normal" and I hear "OK" but I don't understand or believe you. I've heard that before. I have yet to see it.

I knew I was pregnant, but sometimes it would take me off guard. It felt like a dream, a complicated one. Notice I didn't say nightmare....it was an enigma, but never a mirage or a night terror.

I would do all I could to get myself excited; little projects to decorate her room and bathroom, trying to get excited about her parties and obsess about her registry and stuff. I refused to wash any of her new clothes until after she was born, and I felt guilty for that.

Then she came early; and those dreaded words "NICU" "monitor" "too much/too little" came up again. And I was furious and scared. Furious at my body for giving out again, scared to have my hopes of a "normal" delivery and experience yanked away from me.

I just wanted to hold her after she was born. I kept saying that over and over. I just want to hold her, we just want a "wireless baby." We want to take her home.

And then she came, 2 pushes and she screamed and I cried and everytime she screamed I cried. I could have jumped up to Heaven with all the love that flooded my heart and all the hope that rained into my spirit with every cry, every furious motion of her wee hands and feet. It grasped my body and pulled the breathe out of me.

And she didn't go to the NICU and she didn't need to be monitored. She stayed with us in our room until we went home.

Did I sleep? No, I was afraid she would gag and I wouldn't hear her. I still will peer at her while she sleeps and touch her head or body to make sure. Do I want to sleep? No, I don't want to blink and I want to the world to see her, to tell me how beautiful she is so that it all feels more like my life and less like a dream.

Then the word "jaundice" came into our worlds. And the gastroschisis mommy in me laughs at me "really? that's what you're worried about?" We've been through so much worse. But the word "Hospital" came with that "jaundice" word (which I thought ridiculous and let people know) and I felt disheartened and frightened again. They came with her glow blanket and when Jared showed the Home Care lady to the door and my child had a long tube coming from her blanket I lost it....there was that damn wire again, tethering my child to machines or medicine because my body failed her. Something was wrong with her and it was my fault. And now her perfect heels are going to have to be poked and she's going to have to go through all these not so nice baby things and it's just not fair. Why can't she just sleep, eat, poop, pee and worry us about how tiny she is and how big her clothes are.

Because that's life. And if it wasn't jaundice and a glowie blanket, it would be something else.

And this is perfect. It's perfect and wonderful; like the angels in the Bible, frightening and fearsome, a display that makes all who have caught glimpse cower and be afraid. But yet they bring great hope, inspiration and the reflect the power, mercy and deep love of the Father.

Such is life; frightening and fearsome, yet perfect and full of hope and love of the Father.

I want to wake up in this good dream and grab on so that it feels real. And then I don't because it all feels so deliciously wonderful. The exhaustion, the mistakes and the learning curb, the stress, the confusion.

The ability to roll over and kiss her wee self where ever and when ever I want to. All the little things that I never got to do but can do with so much passion and so present and so amazed and so gifted now, how every breathe, every motion is a treasure. How each experience is like Christmas. How she continues to take my breathe away.

Things were like this with Avery, where your heart beats stronger with each bat of the eyes, each coo, each cry and each motion, and now it's even more precious because it's new again, and at home.

Home, which suddenly feels full and fulfilled. It feels like home. The nails, the carpet, the molding, it all comes together into a sacred place to try and contain the beating hearts and elated spirits of the residence inside.

How was life/pregnancy/second chance after gastroschisis and loss? It was amazing. A trip I strongly recommend. Was it always beautiful? no it wasn't. But it was well fought, well lived and well worth the battle. Will I do it again? I hope so. Will anything be different...

probably...but then again, everything always is.

So she's here, my amazing daughter; Breanna Grace Rauen. Breanna means "strength, noble." My Strong Grace is here. Her older brother is here too. And life...life continues to amaze, frighten and inspire me. And I'm grateful for each breathe exactly as it is.

Sometimes I just look at my pieces....

So I'm 25. It's young. It's the middle of being young I suppose. I'm an adult, but I'm still a young adult. I'm young enough to where people in their 30s look at me with that knowing smile...."you'll see one day"....you remember.....the same one you saw when you were 13 and 18 that annoyed the daylights out of you. Only now, you should be wise enough to look back and reflect thinking "yup! They were right!" And these smiles are probably going to be the same too.

So now those smiles come and I take them with all the faith I can. Then I watch the smiles have a quizzical twinge to them.

I suppose for a 25 year old I'm young but I'm also old in some respects. In 25 years I've gone through a rape, cancer, all kinds of abusive relationships, lost my parents, buried a child....

How did I get here? I ask myself that a lot. When did my life get like this? How...what? And I'm sure after talking to me for a few minutes, and as open as I tend to be (and talkative) people wonder, is she really 25?

Yes. I am.

I don't get it either. But it also doesn't bother me.

It doesn't bother me that either this is a pretty rough way to set up the rest of my life or maybe I'm getting the junk done first. I don't personally believe that God set up my life in any particular order for some long "sabbatical" from living, like I will go through the rough parts now and then just be able to enjoy the rest, or that He crams all the crap into certain portions of our lives for some long term lesson. Or for whatever other reason people come up with.

Life just happens. It happens more to some then others. It happens a lot to some and hardly any to others. It's not fair, it's not just, it's not right or wrong....it just is. It's just life.

Yes, I've got friends and people I know and have thought "well, why is she so lucky to have such an amazing family and life? She's never dealt with hardly anything." Why does life happen tons to some and hardly touches others?

Eh. That's just life. It really doesn't matter. It just is.

Some people will say; "well God gives things to those who can handle it" like it's badge of courage or a plaque. Should it be an honor that I'm the incredible punching bag? Is resilience the mark of some sort of honor?

Makes me chuckle. It's no particular honor. Like life, it just is. Would I rather the life where the worst worry I've had in the past few days is what's going on with my job? Well sure. I'd love to know what it's like to have a baby born and my biggest nightmare was that he had so many ear infections we had to have tubes put in, instead of planning a funeral at age 24. Or that my parents may not be able to be able to be at my bedside within the first hour of being settled in to the hospital room. Maybe never hearing "Well it's stage 5, and we're not sure how this will affect you long term" at age 18.....but then again, I wouldn't have what I do.

I wouldn't change what I have for the world. All my pieces, even though they sometimes surprise me too, with all of them I've had a beautiful life. All those pieces make up a beautiful mosaic that makes up my heart and guides most every step I take. I'm able to take an extra step with empathy when it comes to how I talk, how I treat others. You never know! You never know if this day is the day that the girl who's taking too long to get her change in her wallet got the news that she's got stage 5 cancer. You never know if the person who pulled out in front of you at 2 miles per hour is trying to wrap their brains around a birth defect that their unborn child has been diagnosed with. You never know if the man standing infront of the ice cream just staring and starting and staring is trying to figure out if he should have an open or closed casket for his dead child. Or any number of other issues, you just never know.

And who cares if instead of all those things, the girl or man or woman or boy just had an awful day because they couldn't find their favorite toy, shoes, or jeans? Or that the laundry is out of control, house needs cleaning or car has a ding in it. Life is. It is as big as it needs to be for some people and as small as it needs to be for others. It suites who it's given to and as it's given, with no particular reason or honor or consideration.

It just is.

It's funny to me to consider things from this perspective. I don't often get to think about how crazy my life can seem until someone points it out. Tonight I was sharing with a lady the course of the past year, a miscarriage, Maverick's death, 1 year anniversary of Avery's death and his 1st birthday....and then we got to how both of our cars have been in and out of the shop for the past 2 weeks and she says "can your life not be some what not insane?"

And I laughed....it's not insane. It just is. It's beautiful. It really is. Jared is the most amazing man ever. Us together, I really don't believe there could be a better suited couple in this world. Only the two of us would be able to walk through the way we do and still smile. Still laugh and find things to be goofy and happy about.

There's our families and how amazing and beautiful, how supportive and steadfast they are.

There are our friends who no matter what decide to give us a free ride whenever needed, or come and make sure we're OK when we're hitting the "insanity".

There's an incredible God who cries with us and laughs with us, who loves us dearly and never forgets us, who heals our hearts and gives us just enough and then handles our anger and frustrations, our praises and love, just as it comes. Just as it is.

Everyone likes to "justify" and "reason" things, well God has intentions, or things happen for a reason. You know....even the Philosophy major in me is OK with this statement; somtimes things just happen. There's no particular reason, they just happen.

I appreciate that so many try to justify things for me, like it will bring me some peace. But my life really doesn't bother me. I live with my miss, my pains, my joys and my happiness. It just is. I'm perfectly fine not having a reason here because that means that my God is bigger then what I can possibly understand. And I'm good with that.

If I could rationalize the justice behind why so many babies I work with now suffer, my God isn't big enough. If I could figure out why God feels fit to allow parents to bury their babies, He's not big enough.

There's no justice in the mind of a human close to the justice in the mind of God. So if God rules my life, no justice applied by the advice and reasoning of a human will be able to sooth or explain the happenings in my life.

And I'm OK with that. That's how it should be.

Who wants to believe in a God that's no better then they are at logic and reasoning?

And I have a degree in those things. Haha.

My life, simply, is beautiful. Just as it is. Just as it has fallen to me. We have an amazing son, who was absolutely beautiful, perfect and so amazing, and everyone who knew him would tell you the same. The self validity and autonomy I've found from all the other experiences has made me even more sensative to the world and people around me. I've learned great patience and the ability to put on my dancing shoes when the forecast is rainy. Why, I think if Noah and I had been pals and God had turned to Him and said "Well, you need to build an Ark and it needs to be as big as a blue whale." I would have probably turned to Noah and said "Good thing there's nothing bigger then a blue whale out there, we'd be at this forever!"

I'm glad I can laugh at the small stuff. That stuff is small. That if the cable is cut off for a few days, eh, it's no biggy. Or if both our cars are in the shop....and then again....and again....it's not such a bad thing. That I can even laugh at all of it, and be glad in what I do have.

I'm not worthy of any honors, nor is their any justification as to why so much happens, it just is. And we do what we need to.

I'm not even the strongest person you know. I cry quite often at sappy songs that remind me of my blue eyed son. This holiday is probably going to be tough too, like last year. I'm scared of cockroaches, and I hate the hem of my pants getting wet and touching the backs of my ankles. Some of the children I work with frustrate me to tears. But! I'm still happy about it all. I can still laugh about how irritated I get at inanimate objects, how ridiculous kids can be and how precious their logic is, and I have great stories about how I exterminate cockroaches.....plus it's even more funny considering I can waddle my pregnant butt to my neighbor's house and chop off a snake's head with a spade no problem but a cockroach has me screaming to get the shoe....come back...kill it....and while I flush it down the toilet. That's funny my friends. Snake be-header but cockroach scaredy cat.

It's just life. There's somethings that no sense can be made of.

Philosophers sit around and make logic and reasoning for what would be a perfect world. No Philosopher would say that the world is naturally logical or reasonable and therefore all things are within the grasp of logic.....especially with the way that life happens. They will make reasons for what would be the best explanation, or what better way it could have happened. But somethings just are.

Life is. Faith is. Just one of those things. Logic and reasoning doesn't always encompass. But it doesn't mean that it's not beautiful or amazing. Even when it's tragic.

Due to be a mommy again in 6-7 weeks. Still doesn't feel real and probably not as ready as we should be. But hey, that's life. And we're good with it.

Missing Avery...waiting on Sissy

So it's been over a year now...and I'm sure for everyone else things are worlds different. Avery will always be a memory for people...and in 20 years I'm sure some people won't even recall him that easy. That hurts...no mom wants to realize that their child's death here means his memory is limited to so many others. When I look around and see faces of babies and children who are probably about Avery's age, I always think "I wonder..." and I can't and won't stop that.

It won't stop at every annual event, every Christmas, when his friends would be going to Kindergarten, going to prom, graduating....all of it. I'll always wonder.

Some people like to try and give your heart ideas to hope for, positive thoughts to some how cut the miss...the sediment is sweet, but the words and ideas are no where near enough to do what necessary. It's like putting a bandaide on a broken arm, it's sweet but not going to help much. But he wasn't an awful memory, was beautiful, he was precious, the best time of life. Which makes it all the more hard to let go. He's not a painful memory...I just miss him so.

People say "O he's your angel" "he's with you everywhere" "he's happy" "he's whole" O boy do I know...it doesn't help much to repeat all of it...because he feels all those things feel so far away from me here. It just is the way I feel. No words are going to change that.

God aches for us in the same way, our Spirits long for Him in the same way, only more. Those who have babies and children in heaven know just how amazing Heaven is and how beautiful it will be to get back there. And it hurts to be here stuck knowing just how amazing it will be.

So it's a miss...it's not a pain...people think it's a pain...it's not a pain....it's the natural ache to "go home" and be whole...only a lot more intense. Who can be sad to have such a beautiful baby, to be loved so intensely, to be needed so wholly.

That being said...things are getting really tricky, waiting on Avery's sissy.

No baby has been hoped for more I believe. We're so excited to meet her so excited to see her and touch her. There are plenty plans and discussions....

I get so excited and happy when she rolls around and kicks. I get excited when my ticker clicks off closer and closer to the due date....and the months get smaller and smaller.

But a lot is bittersweet...like re-doing the nursery. I'm excited and happy...but I'm also sad and reminiscent. I remember how tickled Jared was when he got the paint and put up the border and how we picked out little things here and there to get the room situated. All the clothes and toys and gadgets...so many of them unwrapped...

She can't replace Avery and we don't expect her to at all. She's going to be a new gem in our family. A new tale, a new adventure. She'll give us a new meaning to life, a new chance and a new breath of life. She'll give us many laughs and many tears, she'll probably have us holding our breaths a few times and glad we are breathing to watch her many others.

I hope she knows how much she's loved, and I also hope she knows all about her older brother and how special and wonderful he is. I hope she knows how much we dreamed of her and want her and how excited we are to have her. I fall in love with her more and more everyday, if that's even possible. December/Jan feels so far away. I'm ready today.

But then...I've been ready for a while now.

First Annual Angel Day. GET INVOLVED!

Our First Annual Angel Day is planned for July 30th 2010.

On July 30th, 2009, Avery John Rauen left to be with the angels in the UNC Butterfly garden from his parents, Jared and Meghan's arms. His beloved family and amazing medical team looked on. He had fought heroically for 107 days against gastroschisis and his life has provided much unity, support and hope for a disease affecting many babies and many families all over the world.

We plan on honoring Avery and other gastroschsis survivors and victims every year on July 30th to raise awareness for the birth defect now affecting every 1 out of 2500 births in the US.

The event is to promote support and raise awareness of the members of your local community affected and how simple little gifts can mean so much.

There are events planned (location TBA) for the RDU area. They are listed below along with suggestions for events to promote, sponsor and put on in your area.

• Blood/Platelet/Plasma drive at area hospitals with NICU's (contact Meghan for NC area hospitals)

1 adult donation of plasma or blood saves 12 babies and gastroschisis babies require much during their surgeries.

• Please support the Ronald McDonald House by purchasing a Happy Meal or bringing your change in to a location or our planned potluck/picnic on the 30th.

The Ronald McDonald house provides access for parents to their children while they struggle through difficult diseases. However, they need your support! The houses tend to fill up quickly, while babies come in and have families who struggle to be by their side.

• On July 30th, Location TBA, at 5:30/6pm we will have a potluck/picnic.

Some food will be provided but please bring a dish to share.

• At 7pm we will do a butterfly release. (Suggested $2 donation to be part)

• At 8pm EST we're asking all families to light a candle or pause for a moment of silence to honor all survivors, victims, expecting parents and families enduring the journey.

You can also:

Promote and come up with a walk/marathon

Create a musical/family event

Promote your own blood/plasma drive at the hospital where your child was

Restaurant Promotional Event

If you would like to donate, get involved, volunteer your time or need help with suggestions please email us at meghanhall@averysangels.org

11,000 babies born today, 4.4 were born with gastroschisis. Let's do something about this. Let's take a moment to honor those families.

We hope you'll join us in our celebrations or have your own all over the world!

Love and blessings
Avery's Angels

Long time

So it's been long time for me to post.

Several activities since last time.

I miscarried in Febuary and was absolutly devestated. It rocked my world and I would spiral and not be able to grasp onto anything around me to pull me out. With some counseling and some meds I pulled through but was feeling very broken and alone.

I also was confronted rather sharply by a religious community I was part of devotedly through Avery's days and it also rocked my world. Jared's dad eventually told me, even through his own disappointment at the situation that "Don't let people who hurt you to rent space in your head or heart."

It's so true. I preach on it all the time. It doesn't matter how many hugs or kicks you did or didn't get, it's about this moment right now and what you're going to do with it and how you're going to live the rest of your life. I'm so glad that God took that moment to use him for those words.

Like everything in my life it's given me more fuel, more of a message and more passion. I was never lucky enough to be born into a Christian community and have always felt the brunt and coldness of the self-riteous who unknowingly look down upon those who aren't saved and speak with such condination and so little experience from being out of that world. I struggle, like anyone else who comes from my "outsider" experience of not feeling "good enough." Churches feel clichey often, and a place full of cookie-cutter people. I hope one day to grow a church where people genuinly can walk through the front doors and be taken in love at their pace in their lives with no strings and no expectations. I hope one day I can be the place where if it takes 80 years or 2 weeks to go down the journey, that you feel comforted and loved every step. Where God isn't the only person calling out, and you don't slip through the cracks, but that there are people consistantly calling and watching out for you. Just like I hope Avery's Angels to be.

I'm happy to say I am officially 12 weeks pregnant and due in Jaunary. It feels so very surreal and like a dream. I'm frightened and freaked at every cramp and pain and twitch. Jared laughs at me and tells me I'm a nut but I guess, granting my experience that it's normal and Mid-Carolina OBGYN has been so accomdating.

Avery's Angels finally has a functioning website! www.averysangels.org and we're growing in leaps and bounds. We suffer from lack of funding and have so many different families in need. I wish that we could strike it rich and get it all done.

We will have a Pepsi Refresh Project to vote on in August and God willing it will finally answer all of our funding needs!! Keep an eye out for posts and updates on voting and links to do so! It will only happen by vigelent people doing all the button pushing they can!!

Patience.......I'm learning again.....

Parenting, Venting in a quazi logical way

Pouring out the heart

As a teacher I get to see the product of many different things that a child has come into. First, every baby is a product of itself, meaning, it has a father and a mother and may have such tendencies that relate to their character. But they also possess their own identities and abilities for self thought and creation. The parent’s objection is to love, nurture, educate and impart wisdom upon their children so they may better survive the world around them. A parent cannot expect to with hold life, experience and the autonomy from a child. They will become who they are regardless of the amount of parental pressure.

Kahlil Gibran says this about children:

Your children are not your children.
They are the sons and daughters of Life's longing for itself.
They come through you but not from you,
And though they are with you yet they belong not to you.

You may give them your love but not your thoughts,
For they have their own thoughts.
You may house their bodies but not their souls,
For their souls dwell in the house of tomorrow,
which you cannot visit, not even in your dreams.
You may strive to be like them,
but seek not to make them like you.
For life goes not backward nor tarries with yesterday.

You are the bows from which your children
as living arrows are sent forth.
The archer sees the mark upon the path of the infinite,
and He bends you with His might
that His arrows may go swift and far.
Let your bending in the archer's hand be for gladness;
For even as He loves the arrow that flies,
so He loves also the bow that is stable.

Truer words have never been spoken about the parent to child relationship. There is no prescription for happiness. What determines ones desires and values is based off their experience and their past, an others is completely different. There maybe similarities in values but the expectations and dreams will vary greatly from child to child, generation to generation.

I look in my own line of work and see children born with tenacity, they’re able to see over their circumstance and strive for what they can and dream of. I see others that are overwhelmed and deterred by their circumstance and need coaching and support to love themselves as they are. The truth is as Americans, we have lost value in the individual. We think that all persons should desire greatness and access to wealth and opportunity, when in reality, being and individual means that we each value different things in different ways.

As a teacher I don’t want my children to be anything but happy. The same as in my relationship. There’s nothing monetary or legalistically that hands you the keys to fulfillment, that can only be realized in your own sense of accomplishment, and everyone has a different understanding of what that is.

Some say accomplishment is doing great things of heroic nature, saving millions of lives and accruing great sums of money. Erecting large buildings and putting a legacy with their name. Others view accomplishment as being a good friend to someone who has never understood the humanity that truly exists in the world.

Parents suffer from this in to opposing ways . Some come from without, have suffered greatly from their struggles and seek at all costs to protect their child from that hardship. They dream of greatness and accomplishment for their children and push them under the guise of “you don’t know how good this is for you or how important it will be to your future.” I’m not talking about encouraging homework, I’m talking about placing value in the extra curricular and their focuses on Ivy League schools and incredible dreams of greatness and success. Then when the child veers off the past, the disappointment and anger from the parents berates the child and makes them feel their uselessness. You see, when we ingrain in our children the value of who they are as individuals is their level of accomplishment, their short comings appears to them as themselves being useless.

On the other hand we have another type of self=absorbed parent who feels that “it was good enough for me so it’s good enough for them.” Was it really? Was it the best for you? And here is a brand new life with the capacity and ability to do something better. Should we keep our lives and our society as “good enough?” Should we not encourage more and better?

Education is a gift, a precious one that no one can take away. It’s perfectly acceptable to build value in education because you’re building value in self worth and self esteem. A child’s ability to problem solve, know the world around him and understand better the world around him equips him with the ability to make self sustaining autonomous decisions. Building the ability to discern wisdom and folly is also a way to insure positive self success.

And here we enter moral values. Plain and simple there are several different moral values, not intentionally causing harm to another person or yourself , respecting others (which in turn builds understanding) being benevolent and kind, standing true to yourself and valuing the good are all important. However, as we educate and build our children with the capacity for independence, and not just the “I know how to do laundry” independence, but the capacity to discern what is right and wrong we should never once condemn their well established and founded believes in opposing theological positions. How can one love God if they haven’t truly made and understanding of Him. He is Sunday school songs and stories, but He is also alive and acting. You may perceive Him in all that you do while others perceive these things as “luck” or “life.” In other words, it is rare that any 2 people have a shared experience, and a parent’s job is to continue to love with in their values and lead by their drawing in and demonstrating how well their own life functions with the set of beliefs they value.

Gibran said :

Your children are not your children.
They are the sons and daughters of Life's longing for itself.
They come through you but not from you,
And though they are with you yet they belong not to you.

You may give them your love but not your thoughts,
For they have their own thoughts.
You may house their bodies but not their souls,
For their souls dwell in the house of tomorrow,
which you cannot visit, not even in your dreams.
For life goes not backward nor tarries with yesterday.

God has given your children life. He already gave you life, now these are their own. Their future is different and will be different from your own because change is always happening. We say that history repeats itself, but in very different ways and very very different capacities. The experiences you have had are in the past, and “life goes not backward nor tarries with yesterday.” There are lessons to be learned from past experiences, and ideas to make not of, but inflicting these values and warning as inevitable is “tarring with yesterday.”

Gibran illustrated the role of a parent beautifully, you are the strong bow, and God places the arrow and aim into the future. You are not the archer, God is, in His infinite wisdom and knowledge, he bends you back and takes aim. But as Gibran points out, the bow must bend graciously and with joy so that the arrow will fly far and aim for the target that God has intended as He is the archer.

Many parents forget this. Their child’s life is not their own, through conception and birth you labored them into this world, but it was God to gave them life, dreamed of them coming and created them. He gives them their heart and plans out their road before they are even thought of by you. And although they may suffer and make meandering trips towards directions that you would not wish for them, they do not belong to you and their life is not yours to dictate. Your place is to love them and protect them as to your ability and not dream for them.

Be a flexible bow and trust the great archer. Although they are your children they do not belong to you, their souls are not for you to maintain. You impart the wisdom, love and education that you can, you support them unconditionally as Christ washed the feet of those who would hang him on the cross, but you cannot direct the aim of their life. There is only one person who caused that movement and allowed it to come to be. Beseech the archer, love the arrow and surrender to your shortcomings. You are a parent, to help love, lead and gently persuade. Not to dictate and self determine. No matter the fact that the arrow and bow may have been cut from the same tree, their function, their grain and their density is much different.

All parents, love on your children, encourage their wild dreams and their not so materialistically bound endeavours. The truest bliss and happiness to God is when those whom he has set forth act in a full heart with great joy their truest talent and are really thankful for their abilities. Not when they are just happy they covered their bills and their lights are still on.

Here’s another warning:

Be quick to think before you take and emotionally charge opinion on anything. Breath and rationalize your truths and think about the answers to the dissension

Just a philosophy trick. Arguments are much more effective and well “fought” when not based in emotion. Emotion has the capacity to cloud judgement

Avery's Angels Update

Hello Friends-

The good news is I now have a computer and wireless! So I can work on more things!!

First off; we need funding! Kasey Butler is running an AVON eparty to benefit our cause! Contact her at kbutler810@gmail.com

Also, we need some English majors for 2 projects: re-reading over any stories that we are accruing from members and also to re-read over any literature we're looking to put out. Need our best foot forward.

We also need more area volunteers to help with childcare for those in the NICU, bringing food to families going through the NICU exprience or just volunteering their time/phone lines for people who may need the support.

We also need someone else to help support our amazing June scower the internet looking for new friends and people who may benefit from our support.

Help now and get involved! Email me at meghanhall@averysangels.org

Dear Friends!

So Avery's Angels friends and family browsers you're probably scratching your heads as to why the delay? Where is Meggo? What's going on?

Lots and lots. I felt extremely overloaded for the past few months, by life. Life happened in very cruel ways and it has taken me more time then normal to jump back on my feet.

I had a very personal and tragic health issue happen in February, it has made me take a bit of a "Jesus sabbatical" which some of my friends are having a tough time wrapping their heads around. I don't blame them but it's all true to my personality. I'll explain:

I've been shoved around and hurt a lot. I am "Suzie Sunshine," a "Pollyanna" of sorts. People have always said "You're too nice" or "You let people walk all over you." Which is funny. How are you "too nice?" And a close friend of mine put it best "I treat others the way I wish this whole world treated people." Perfect. There's no point in adding to all the "thick skin" and "apathy" in the world, so many admit that as a problem. Plus, who doesn't love being around the person who always inspires a smile and hope? I absolutely loved the "Pollyanna" story/movie when I was a little girl and I remember hoping to grow up and be just like her; persevering always and blinded to all the wrong in the world and only able to see the sunshine and "rainbows on the wall." She was someone that made the grumpy smile, the invalid want to live, the broken hearted whole. Who doesn't want to live a life like that?

I constantly stop myself mid ramble to say "I'm going to stop because I'm being ugly." I had to do it on Weds night. There's a difference in venting and "being ugly." Being ugly is when you get swept up in the emotion of what you're saying and feeling, your body tenses, your face darkens, your thoughts obsess, and it turns in to a voo-doo-mama-joojoo bashing session. Not good, for your spirit or those previe to the shpeal. Venting is when you release tension in a private setting to one or a couple people, it usually ends in some sort of cathartic release and or realization on the sore spot and a solution to fix the issue. Being ugly just makes the whole thing uglier.

So I spend a lot of time fighting the urge to be "ugly." So many people get swept up in venting and don't realize that they've stopped looking for rainbows in the issue and have started heaping on the poop. It's ugly.

When you're at a sensitive and bruised part of your life there's a lot of venting to be had and then there's a lot of ugly to be swept up into. I went through a lot of venting and was sore. So it made me more previe to being ugly. I saw it in myself last week and think now I'm on the upswing to being back to "Pollyanna." I'm nursing a lot of bruises but I'm getting back there.

This is a long explanation but you'll see where I'm going.

I was watching one of the "Forensic Files" from I think A&E last night and the sister of a murder victim said "The person who said 'Time heals all wounds' has never experienced something like this. Because time doesn't heal this wound. It makes it more tolerable, but it doesn't heal. There isn't an hour in a day that goes by that I don't think of her." BINGO! Time doesn't heal my Avery wound, and I don't expect it to. There isn't an hour or minute that goes by that I don't think of Avery. How can I, even in death I am still his mother. I won't ever stop being his mother and he won't ever stop being my son, in death or otherwise. Time hasn't made anything any easier, it has made it so I don't cry all the time, but it wouldn't take much to get me there.

There's an expectation in just people's faces and demeanors around me to "give it up." "Get better," "Focus on the positive." I am focused on the positive. I always smile, I always seek the hope, I always shine in the sun. But I will always miss my baby boy. That hurt has no resolution until the day I can ask Jesus "Why" face to face and get an answer. That means a life time of living with the question.

Yes I always talk about Avery, don't you always think or talk of your kids? Doesn't your heart jump into your throat when their school or day care calls? Or when there's something not OK with their health or well being? Or when they're teenagers and all of a sudden that sweet child is replaced with a rambling, fumbling and often times hurtful teenager? Well, Avery is my son, my child, and he will always be in my mind in that way because he was born "sick" and died. There wasn't a time I got to spend with him outside of my body that he wasn't attached to wires and machines. So that "worry" is present inside of me in a very different but real way. And his death magnifies that. No matter the prayer, therapy and time, I will always feel that I failed him as a mother, I couldn't protect him and preserve his life. That's just the sheer nature of being a mother or a father, that is my biological function, to preserve his life. So yes, Avery walks with me every day and he's on the forefront of my brain and on the tip of my tongue.

He will be 1 year on April 14th 2010. Don't expect a pretty, sunshiny Meghan on that day. I have been dreading that day and July 30th for a long time. I have no expectation but I do have worry.

So when I ran in to health obstacles in February, as I was on the upswing on my grief "cycle" from a very difficult holiday, I again found myself flat on my back. It felt like I was just beginning to tread water and I got a tsunami dumped on my head.

And I walk closely with God all the time. And I wasn't happy with Him at all. I can't figure out why He picked all these things to happen to me before I was born. Enough is enough. There's a whole theological discussion and ranting I had, but I'll spare you the details because it's very bleak and dark and no fun.

My roots were shaken. I've already been in two abusive relationships and have my "cut off" point. When I get hurt, I shut down. Literally. I don't respond, I get very apathetic and I turn inward. I shut the aggressor out, I "run away" and I make myself unreachable. And I look at God the same way.

Some may think, like a lot of my friends "Whoa there lady! You can't be that way with Jesus." Here's my charge to you.

Your pastor probably talks all the time about a personal connection and relationship with Christ. No one knows that better than myself. God isn't up there in the clouds or in the steeple somewhere. He is everywhere, in everything, part of me, part of everyone. God is my husband, my best friend, my confidant, my Father, my God, my ruler. Everything. But as my husband, best friend and confidant, why wouldn't I be honest with him? That does no justice to our relationship. I wasn't happy with Him at all. He could chase me with words of "sorry" and "I love you so much" all He wanted and I just told Him "Hey! Let's see it, stop talking all this jumble bumble and let's start seeing it buddy." Just like I have other relationships.

We spoke about how in earnest I look for Him everyday. How I turn my life over to his bidding everyday. How I search His word, pray and turn my problems over to Him. How I try to serve Him always and put Him first. How I am honest but turn to Him in my times of need. How I hold my success and goodness to His glory. How I surrender.

And I told Him, I come crawling into your lap and you hold me for a moment then let me tumble right out and I come crawling back. Not going to any more. I love you, but I don't like you at all right now. I'm taking a "sabbatical," we're taking a break. I'm not going to talk about Your love to others, because I'm struggling to see it in my life, we're not going to be shinning any Glory because, I don't like you right now and I need some time. No glory right now, not going to give it. You love me? Come find me. I'm open but I'm not going to be running after You. I've been chasing after you for a while and you're making me feel like a fool. It's your turn in this relationship to start making some real movement of healing and progressing this stuff forward. You're Jesus...

Sounds a bit audacious doesn't it? Well, He's God, and He can take it. The truth is, He loves me, He made me the way He loves me, so why wouldn't I be honest with Him? In our relationship, this is how I feel.

So I'm in a "halfway house" with Jesus right now. Our relationship is real and I can tell you that He is real, but right now, I'm not speaking in such a loving tone with Him. He's big time in the dog house.

He's been very patient with me. For a week or so I had some heavy hitters pushing Him on me and I suppose He gave me the right words to space out their desires for me and let Him come through. I've taken a break from worship team because if I can't get on stage and help lead others to His praise wholeheartedly and undistracted then I'm not going to. It's not responsible. I'm not ever going to put on an act.

He speaks in great volumes through Jared. I live in a very protected and provided for world where Jared sees me through, he's always honest with me and he's always loving. He provides, protects and loves me. The cards and words he picked out to "spoil" me with on my 25th birthday (March 9th of this year) were perfect and amazing. He is the closest thing to God's love in my life. Unconditional and real. He gets annoyed with how "gushy" I get, but when you haven't ever felt all the aspects of true, unconditional love in your life ever, you're continually amazed by it. And yes, I really am.

I also have an animalistic response that has been conditioned in me from my life experience that I work against daily; my mind sometimes convinces me that everyone has left me (sometimes I start to think it's my fault, something is wrong with me) for one reason or another and that Jared will too. But in his love, in his trust and truth and self, I know that's not true. I know quite clearly that is a lie that the devil uses to weaken me and distract me. To put fear in my life, to shackle me.

So there's my long reason to the delay. I shut down. I was introspective and trying to breath. I had a lot of "life" in my lungs, I was drowning and then tired from the struggle. I am Pollyanna and I'm getting back to sunshiny. God is pursuing me and working in my life. I'm letting Him, like I said I would, but like all relationships it is constant work. We're coming together but it takes time.

Jared doesn't like that I think about it as much but my prayers constantly turn towards another baby. Those around us wish for other things but let me tell you: a child represents hope and future. When it is taken away from you, there's little purpose. When life constantly throws up reminders, and trust me I see every pregnant lady, I see every family, every baby buggy, every diaper purchase. EVERYWHERE I'm reminded that I'm not a mom here. I'm waiting, constantly waiting to use that part of me that has already been awakened and is just sitting innate in me. I'm waiting on a baby. Nothing will change that until I feel a small body swimming in my belly. Whether you think your prescription to what Jared and I need isn't this, you need to step into our shoes and walk a mile. We are mommy and daddy, our lives in that aspect is on hold. We're ready, we have the supplies, physical and emotional. We've been ready and waiting for over a year. No one is more prepared and wanting than those of us who are angel parents. And I'd appreciate it if your prayers and petitions would turn towards this realization as well. No peace will ever take full grasp of Avery's gap in our lives, but purpose and hope will come through only in his sibling. There's no way of you fully comprehending this if you haven't experienced it, but just trust in my experience. This is the truth. I speak from no other way.

My update is simple. I needed a break from everything. Just some time to reconstruct my Pollyanna. I fell out of the tree reaching for my doll and I'm learning to walk again. There's lots to do and accomplish and I'm well on my way. The sun is peeking through, Spring doesn't happen suddenly, blooms open, slowly but graciously.

Hello!!

I'm sorry I haven't posted in a minute. I've come through some medical fun-ness. I'm sure my doctors turned into vampires for 3 weeks there. O well! At least that's done! I'm feeling much better too!

So Avery's Angels is well on it's way! We have so many new faces who have reached out for help or to help and we are getting the site up soon (look for it in a few weeks!) and UNC Hospitals has created a whole team for our medical web needs. It's very promising.

If you have been referred to this site looking for support please email me at meghanhall@averysangels.org We have a library of support available to you and whatever you may need, medical answers, hospital referrals, support, or just to talk we can get you plugged in!

(I LOVE SAYING WE!!!)

If you are an existing group or related group I want to enlist your help and support. We're taking everything out there to the next level. And we want you and your members listed to broaden your efforts, help you and also have your help with what we have going on! Put it this way, if every gastroschisis site out there could umbrella there would be a family in each county in the US with gastroschisis experience who could help another family. Let's do this!!!

I will forewarn everyone that I'm thankful that I will no longer be the sole face and spokesperson for this endeavor. The websites will be up and you will see how many thousands of families out there all need Angels (that's us!) and how we're getting to them AND how our angels and babies (some of whom are grown!) helping everyone.

(And I can start journaling again!!)

Cycles of grief are tricky and I don't want anyone who is searching for answers to be dissuaded and overwhelmed by some of the content here. YOUR PROGNOSIS IS GOOD! Our Avery boy was a little anomaly but his carepath was not. That is my motivation, our motivation (I LOVE SAYING OUR TOO!!!) That we know how alone it feels and how little there is out there that you can get to for a real answer. There's a lot, scattered everywhere, but we're getting to answers in one place to inform you and give you some of that control and power back that I'm sure you're feeling got yanked right out of your hands. Your baby is going to be on an amazing adventure. And we're here to get you through it all.

LET US HELP! I know we sound like every other website out there for right now, but the good news is we have reached their admins and hopefully soon we'll be all together. And we can offer a DIRECT LINE OF COMMUNICATION WITH ONE OF THE MOST EXPERIENCED GASTROSCHISIS COMMUNITIES AND HEALTH FACILITIES IN THE NATION! (It will come from a doctor with a UNC email address so don't believe me? Just try! hehe)

Join us! Meet us! Let us meet you! Let us help you!

Love from so so many at Avery's Angels
Meg

Forward momentum

This week we have recruited many new volunteers and the gears are turning. I'm learning how much I desperatly need a computer as my iPhone makes organizing all these folks and information increaslingly more and more difficult.

Several things-

We need more volunteers and more information. Please contact me with your name, information, talents to offer and interests to meghanhall@averysangels.org

We will be moving forward to get our websites up. I have a meeting this weekend with the webdesigner to organize and design our content. I will warn that our initial output will be a work in progress but I'm so confident that it will be a great foundation. We will be starting with our support site, averysangels.org while we allow time for the UNC Hospitals to collect the massive amounts of information for the medical site.

I'm still looking for carepath stories and belly button pictures. Please submit them too me (bear in mind we won't list names if people would rather not once they are posted.) Any medically relevant pictures or video we'd love to make accessible to our parents out there.

Let me hear from you! Contact me at meghanhall@averysangels.org any time with concerns, questions, support needs and suggestions. We are here to serve.

Psalms 91, we are here to be the angels to lift your body and spirit up so that your feet will not strike a stone. Let us help and build this organization in the way that will best benefit you.

Love and blessings
Meg

CONTENT

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

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

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

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!

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

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

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

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!

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.

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.

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.

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

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