H.A.L.T. - Take Care of Yourself

"Don’t sacrifice yourself too much, because if you sacrifice too much there’s nothing else you can give and nobody will care for you.” ―Karl Lagerfield

Mr. Lagerfield not only knew fashion, he knew human nature.

I saw a post from a new Mom who recently brought her adorable CDH baby home about how she had not taken a shower, truly felt she didn't have time in taking care of her child and this inspired this post.  Often times parents, expecially those of these children put their own basic needs at the bottom of their endless to dos they do on an hourly or daily basis and the results are not good.  This also applies to our grieving families too  Grief is very hard work. 

H.A.L.T. is a self-care tool.

H is for hunger, we need fuel to live, nutrition to keep our energy levels up and  lack of nutrition can lead to illness.  If you just can't make meals, stock up on healthy snacks, drink tea (herbal is best but black tea is fine too) through the day and water rather than caffeinated drinks all day.  You will not "crash and burn".  Ask others for help and be specific.  If you know your good friend makes the best vegetable soup ask if they will make you some to get you through this overwhelming time!  Most great friends would love to help and that is a very small thing that is truly appreciated.

A is for anger.  Often times with this diagnoses of CDH there is anger.  Why does a child, mine or anyone else's child have to endure this birth defect?  We are robbed of the perfect pregnancy and the typical ideal birth and going home.  It isn't fair, nor is life but we hope through it all it balances itself out in the end.  Do not suppress your anger.  It will manifest itself and come out in unproductive ways.  Writing about it can help, exercise can help and expressing it can help in a controlled way.  If you have trouble with this, do not be ashamed of asking for help from a professional counselor or clergy. 

L is for loneliness, our experiences can make us so isolated from the rest of the world.  There are wonderful on-line groups through forums or Facebook where you can communicate to other new or grieving parents who understand what you are going through.  Often times one person will express something others may not have realized they experienced or are going through themselves.  Feeling that connection can help.  For grieving families look into local groups of Compassionate Friends or others which may meet once a month.  For couples, take at least a couple of hours a month to have a date.  Go for a quick dinner, an ice cream cone or a walk around the block.  Listen to one another, it doesn't mean you are both going to be on the same page but respect what the other is going through.

T is for tired.  This is a tough one.  Often times many of our families have suffered with insomnia.  It is a nasty side effect of being a family of a CDH baby sometimes.  Some of the sleeplessness is normal for new parents and grieving parents too.  Try to get into a regular routine. Do not feel you have to do everything at once.  Pick one thing to "keep up with", laundry comes to mind and let the other things slide so you can rest or sleep.  If you continue to have problems sleeping or getting enough rest, consult your doctor who can help and come up with a solution.

Above all - realize all combined, you are far too overwhelmed to take care of anyone well and often times we lash out at others.  Apologize for this and do not make any judgements, hard decisions or take action until you HALT and rejuvenate yourself.  You can't take care of others if you don't take care of yourself first.  There is no shame in asking for help, in fact, it is a sign of strength to know you are overwhelmed you need help. 

We are often contacted when a family just learns their unborn or new born baby has been diagnosed with congenital diaphragmatic hernia.  We offer to send them a package with information we compiled from our families, painstakingly edited it and had medical advisers review and edit the information also.  In January, we also had a copy righter review them so they were easier to read.  We also provide infant blankets, hand print kits, Socks for Surgery socks, Guava Infant Mittens and a variety of other things donated by families we have on hand at that time.  We then hope and pray their baby will be of the 60% who will survive.  In some hospitals, it is up to 75% or higher.

Very often parents contact us after their child goes home or becomes an angel and they tell us how much they are amazed with the CDH Community, those that have reached out and encouraged them when they felt helpless or at their lowest.  How they found comfort in the words we wrote them, the items we gave them or the kindness of complete strangers who have this CDH Connection gave them.  How can they ever repay it?  They do, in turn they pay it forward by reaching out, being kind and keeping other babies and families in their hearts.  So much sometimes they must take a break, but they come back.

This blog post is about thanking all of you for reaching out, stepping forward, sharing your wisdom and children with those who just begin this journey forward.  We know not what will happen but we have hope that their child will be one that does pull it out and Kick CDH Booty.  Even the angels do some butt kicking of CDH and are miracles too.

Just remember to take care of you through this all too!  Thank you! 

The Frontline for Hope

A new series is featured Saturday nights at 6:30 on KSDK NewsChannel 5 titled The Frontline for Hope featuring patients, families and the doctors, nurses and staff at Saint Louis Children's Hospital.  The first episode premiered Saturday, March 16 and is now available for all to view on line.  We recognize many of our families and the amazing staff in Episode 1.  < Click on Episode 1 to take you to the website and view but before you do, grab a box of tissues!  

Thank you to those that put this together! 

6th Annual CDH Awareness Day - Week

After Breath of Hope established itself as a public charity, we had to find our nitch in the CDH Community and we came up with the idea of launching the first ever CDH Campaign for Awareness by establishing a Congenital Diaphragmatic Hernia Awareness Day in 2007.  March 31st was chosen because at that time, we had no CDH angel or survivor who was born on that date nor became an angel on that day either.  We didn't want to take away from special days of those children and families.  We did discover, quite by accident that one story of a child published in the newsletter, the child's birthday was indeed March 31st.  It was not intentional at all.  We thought at that time it was just something that we meant to be.  We sent out that Newsletter with ribbons and our announcement.  Our Board of Directors had already sent in requests to their respective states.  Iowa was the first State to Issue a Proclamation for March 2008 - the whole month to be Congenital Diaphragmatic Hernia Awareness Month.  Thirty-four states followed issuing Proclamations for March 31st to be Congenital Diaphragmatic Hernia Awareness Day. 

This year, March 31st is on Easter Sunday and in an effort not to infringe upon the religious holiday we are sending requests to have the last week in March (25th - 31st) to be Congenital Diaphragmatic Hernia Awareness Week.  This also gives family and friends more opportunity and flexibility to plan local events!  If you would like to send a request to your Governor or Mayor or locality, you can go to our website here and download the documents or if you have difficulty doing this, contact us at cdhawareness@breathofhopeinc.com, we are happy to send you this information!  We have already had one Proclamation received and we only request you send us a picture or scan of the document via email. 

We also have a Facebook Event you can join here and we are giving ideas on how to celebrate Congenital Diaphragmatic Hernia Awareness Week.  If you plan an event in your area, please let us know and we will help promote.  All funds raised for the month of March 2013 will go into our Research Fund which has a balance from March 2013 of $1,380.00. 

We also have started a Petition to have the White House turn Turquoise a day or the week of Congenital Diaphragmatic Hernia Awareness.  Here is the Petition and we must have 25,000 before February 6th to be considered, please sign and share here is the link!  Wouldn't it be amazing to see this image below or something similar? 

Please feel free to contact us (cdhawareness@breathofhopeinc.com) if you have any questions or would like us to help promote your event!  Thank you all always!

Kickin' some CDH Booty - Socks 4 Surgery!

There is a wonderful organization Socks 4 Surgery that provides socks for infants and children who are facing surgery.  These socks are to inspire, bring smiles during an otherwise uncertain and fearful time.  Several of our families have received socks from this amazing organization and we have now received socks to provide in our Expectant/New Parent Packages (pictured above).  To keep the toesies warm and bring a smile to the families, nurses and doctors!  Thank you Socks 4 Surgery and all you do!  Providing hope and comfort in even little ways - it is immeasurable!  You can also follow them on their Facebook Page at this link:  Socks 4 Surgery Facebook

Fundraiser in Kasas City, MO - BOWLING for CDH!

One of our amazing families is hosting an event in Kansas City, MO in honor of their son Noah click on his name here to see his feature for our Faces of CDH!

You can meet other families, bowl, talk corvettes and CDH!  This event is family friendly and will benefit so many families affected by CDH!  Thank you!

Yes, it is early but we are hoping to get a jump on this project and are requesting photos of YOUR individual "Face of CDH" for our 2013 Faces of CDH Calendar.  These make wonderful gifts for under $20 and people do take notice of these calendars when hung in offices!  It gives the opportunity for people to raise CDH Awareness.

Please email your pictures to pictures@cdhawareness.org or elizabeth@breathofhopeinc.com (sometimes our email accounts become too full when we request pictures!  The best format is .jpg and we do ask that you sign a release so we can use your photos.  We want both CDH Heavenly and Earthly Angels, even ultrasound pictures if you would like to share your soon to be CDHer! 

We hope to have the calendar out in early November this year and deadline for submissions are November 2, 2012.

Thank you - always!

Dear Friend,

You have an exciting opportunity to help us make even more of a difference inour community. GreatNonprofits – a review site like Amazon Book Reviews or TripAdvisor – is conducting an awards campaign to identify the top-rated social justice nonprofits in the country.

Won’t you help us participate in the awards by posting a review of your experience with us? The awards deadline is October 31st, 2012. All reviews will be visible to potential donors and volunteers. It’s easy and only takes 2 minutes! Go to http://www.greatnonprofits.org/reviews/write/breath-of-hope-inc/campaign:social-justice-2012/

With your help, we can gain greater visibility in the community.

Thank you!

3rd Annual CDH Summit - You can View!

Our 3rd Annual CDH Summit in Colorado was amazing.  We have the following links to the "raw" presentations we had a live stream available for everyone to attend.  Thank you all who tuned in and please bear with these - new technology and we are all learning!  We hope to do this for all future summits too!  Nothing compares to being there and meeting the amazing speakers and other families.  Truly, there is healing and lifelong friends confirmed at these meetings!  No one goes away without a hug!

We would also like to thank each of those that presented information or their stories. 

Jason Gien, MD - Advancing the Care of Infants with CDH through Laboratory Research

                            Long Term Care for CDH Children

Susan Marshall, NICU Dietician - CDH Infants - Nutrition for the CDH Neonate

Elizabeth Doyle-Propst - Post Traumatic Stress Disorder - CDH Parents Experience

Katie Edic, 29 year old CDH Survivor - also in the above link video footage

Timothy Crombleholm, MD - Fetal & Pediatric Surgery, Surgeon in Chief-Children's Hospital of Colorado 

Julia Wynn, MS - Certified Genetic Counselor/Research Coordinator, New York Presbyterian Columbia - DHREAMS

Meaghan Russell, MPH, PhDc, Pediatric Surgical Research Laboratories, MassGeneral Hospital for Children and Anna Frangulov, Research Coordinator, Boston Children's - both with the Pediatric Surgical Research Laboratories for the CDH Study

We would also like to thank Amber Burton of Team Abel - Colorado Chapter of Breath of Hope and Eva Schaeffer who both helped to put together all the events and coordinated everything so well!  Your work is invaluable! 

3rd Annual CDH Summit in Aurora, CO

Our third annual summit will be held in Colorado this year.  The dates are:  Wednesday, June 27, Thursday, June 28 and Friday, June 29th.  Hotel reservations must be made by June 5, 2012.

Please sign up here so we can have an accurate headcount and below is the tentitve agenda:

Wednesday June 27th
9:30am-10:30am Dr. Jason Gien-CDH/PPHN Research Doctor for University of Colorado/Children's Hospital Colorado

11am-12noon Susan Marshall Dietician/Nutritionalist from Children's Hospital Colorado (CDH nutrional info followed by Q&A)

Lunch 12-1pm

1pm-5pm Museum of Nature & Science followed by dinner (we can pick a place and invite families to join us or families can do dinner on their own)

Thursday June 28th
9:30am-10:30am NICU social worker (Name TBD)

10:30am-11am Katie Edic, CDH survivor share her story.
11am-12noon Dr. Crombleholme Fetal Surgeon (This is still being confirmed so times may change) CROMBLEHOLME HAS BEEN CONFIRMED

12noon-1pm Dr. Jason Gien CDH Pediatrician specializing in following CDH children in clinic and long term effects/complications of CDH (this specific topic and time is flexible but it's very important to discuss the long-term care of CDH children)

4pm-8pm Family Dinner/Fundraiser at Cici's Pizza

Friday June 29th

9:30am-10:30am Liz McKelvey NICU Nurse (specialized with CDH babies followed by Q&A)

10:30am – 11:30am Dhreams Presentation (Columbia University) Julia Wynn

11:30am-12noon Fetal Maternal Center & NICU Tour

1pm Zoo (if not attainable, Cherry Creek reservoir picnic pavilion for lunch, volley ball, and fun for all)

**Butterfly release will be scheduled for one of these days!**

Updated May 21, 2012 – still working on details and there could be adjustments to the schedule.