We are happy to be sharing that Lasting Imprint has partnered with the Semple Mansion in Minneapolis in an effort to reach more families who want to participate in our monthly CHD Discussion Groups in the Twin Cities area! This month we will be hosting the discussion group at this location in hopes of making it more convenient for more of our families. We will be switching off between this Minneapolis location and the Eden Prairie location. Please make sure to watch for our events to be posted on Facebook, on our website, and in the monthly newsletters so you know when and where we are meeting each month!
Our CHD Discussion Groups provide an opportunity to meet other heart families, share your stories and learn from one another. Hope to see you there! Feel free to contact us with any questions or suggestions you may have.
Twin Cities Hospital Outreach
Twin Cities Regional Coordinator
"CHD Discussion Group"
For those continuing the fight against CHD
Be on the lookout for our new location!
No meeting in March
No meeting in March
Twin Cities Area
Immanuel Lutheran Church
16515 Luther Way
Eden Prairie, MN
Childcare and refreshments provided
See Semple Mansion location
The Semple Mansion
100 West Franklin Avenue
Childcare and refreshments provided
Sioux Falls Area
No meeting in March
"Remembering a Heart"
For those affected by loss to CHD
Twin Cities Area
1583 1st Ave E
As always, anyone is welcome to attend these gatherings. Please be considerate about germs and take precautions if you've been around anyone who has been sick.
CHD Awareness Week Events!
Due to the weather we had to reschedule the Mankato and Alexandria events. Please see the new dates below.
Alexandria, MN (serving Western MN)
Alexandria Area YMCA
110 Karl Drive
Join us for an afternoon of fun for the whole family! We will provide lunch and snacks. Families will be able to enjoy the gym and pool--waterslides will open at 1:30pm! Please RSVP to Lindsey at firstname.lastname@example.org by March 2nd.
Mankato, MN (serving Southern MN)
2030 Adams Ave
Join us for an afternoon of food, fun, and bowling! Lunch will be provided beginning at noon. Bowling and shoes will be provided from 1-3pm. Laser tag and mini golf will be at a discounted rate of $5+tax each.
Look for our group in the VIP Suite! Please RSVP to Samantha at email@example.com with how many adults and children will be attending by March 2. If you have family or friends outside your immediate family that would like to attend, we ask that they pay $10 per person. Please RSVP for them as well.
We can't wait to see you at one of the events!
Our Community Has Heart! 2013
Get your walking and running shoes ready for the 3rd Annual Our Community Has Heart! event coming up on May 18th in Mankato, MN! Registration will begin soon so start rounding up your teams. We can't wait to see you there!
CHD Awareness Week Event Recap!
Despite the snow on February 10, people trekked out from all over the Twin Cities to join us at Doyle's Bowling and Lounge for a fun-filled day! Although the snow kept some of the nearly 100 people we were expecting at home, we still had 34 people in attendance. Some brushed up on the bowling skills while others participated for their very first time. The lucky attendees got to enjoy a variety of pizza from Down in the Alley and delicious made-from-scratch cupcakes donated by Becky Hunt with Cakes from Grace. With flavors like peanut butter cup and banana split, they brought smiles to young and old.
Beginning to Heal!
In January, Lasting Imprint sponsored Becky Hunt and her husband Shawn to attend a weekend at Faith's Lodge. Here is what Becky had to say about their experience:
After losing your only child your whole world kind of crashes down and you feel stuck in a moment of shock and disbelief for days, weeks, even months. Your life takes a complete 180 and you feel hopeless and alone. My husband, Shawn, and I lost our first child to a heart defect called Hypoplastic Left Heart Syndrome in October of 2012. She lived 82 wonderful days and we miss her everyday. Finding hope in most things is hard after only 4 months of missing our Gracie Girl.
A fellow heart Mom and volunteer of Lasting Imprint who also lost her baby girl to HLHS told me about a retreat for bereaved parents of children. She told me that Lasting Imprint sponsors 2 families a year to go to Faith's Lodge and told me who to get in contact with to start the application process.
On January 17th Shawn and I headed up to Dunbury, WI for a long 4-day weekend at the Lodge. It's in the middle of the north woods of Wisconsin and is a beautiful, peaceful, and relaxing spot in the world to just get away from everything. The Lodge was all made of wood inside and out with a gas fireplace in every room. They had a library just full of books written about child loss and grieving. There was a cozy great room where we had a group session and talked about our missed loved ones with the other couples. My favorite part was all of the crafts we got to do in honor of our babies. We painted tree houses and heart-shaped rocks that we later placed in their rock garden, and where the men got to work on a wood project to take home. Our suite was wonderful and each room had a journal in it for every couple to write their child's story in to leave for the next couple to read just as I read them all. I took advantage of their big kitchen and scurried up whatever I could find in their pantry to make some cupcakes on a snowy afternoon. Their pantry was full and accessible to every guest. We had a nice campfire one night and made s'mores as well.
The two hostess', Evelyn and Kelly were very friendly and hospitable. They made some dinners and even some lunches for us. The 3 other couples and single mother that were there were so great and it was good for me to talk with the other Mom's about how they're coping and dealing with their losses. Each of our stories were different but we were all mourning the loss of our babies.
I asked some of the other couples to tell me what their thoughts on the weekend were. These are some of the things they wanted to add:
"Faith's lodge provided us with the chance to share our story and hear stories of other people in a similar situation and know that you are not alone in our grief and healing".
"Faith's lodge provided me with the chance to spend time with my daughter, something I never got to do with her outside of the womb. It gave me the opportunity to say her name to other people who understand just how important the act of acknowledging my daughter and her memory is to me as a grieving parent. It provided me with a place to connect with others and learn from them new ways to move through the grieving process or at times learn how to sit with my grief, but realize it will be okay to let it in. Faith's lodge provides you with the opportunity to do just that."
"I believe that time at Faith's Lodge is something that will benefit every grieving parent. It afforded my husband and I the ability to unashamedly focus in on the child we lost, remembering her without feeling rushed or pressured in any way. We walked into Faith's Lodge not knowing what to expect, and left with the memory of so many wonderful experiences honoring and commemorating our daughter. Most importantly, we gained friendships that I believe we will have for years to come as we continue stepping forward each day on this lifelong journey of learning to live with our loss."
"When we reflect on our time at faiths lodge the first thing that comes to us is the word peaceful. From the moment we arrived until we left we felt welcomed and the presence of peace. We felt less alone as we met other couples that were walking through a similar loss. It was a safe place to reflect without feelings of guilt, questioning, and being rushed. We would recommend faiths lodge to anyone who is looking for a place to continue their healing journey. Grief will always be with us, we are just getting better at dealing with it."
I think overall the weekend was healing and it was the beginning to the many stepping stones of our healing process. I walked away from that weekend feeling a sense of peace and gained some very special new friends. From feeling hopeless and alone prior to going to Faith's Lodge, I walked away with an eagerness and hope for what God has in store for our future. I highly recommend anyone that has lost their child to go to Faith's Lodge to meet other couples who are going through the same things and to just get away and honor your babies in creating memories and keepsakes.
Please be sure to read Gracie's story in the "Journey of the Heart" section!
Journey of the Heart
Gracie's heart journey told by her mother, Becky Hunt.
There are times in our lives that refine and define us. For some, we are placed into the fire of refinement more intensely than we would have ever imagined and this forever changes the course of the rest of our lives. 2012 was one of those years for our family. We have had lots of ups and downs but have had so many blessings and answered prayers along the way.
I was around 12 weeks pregnant when I had my first ultrasound. It was so exciting to hear this baby's heart beat and see my baby for the first time. This was also the first time we had any indication that there could be a problem. The ultrasound technician told me that there was some concern with the amount of fluid around her body, chest, stomach, neck and head. So we had to go to the prenatal clinic and have a level 2 ultrasound.
The day of the level 2 ultrasound was one of the most devastating and hardest days of my life. They said that this baby could have Down Syndrome but they were more confident that it would be Turner Syndrome. They told me that this baby probably wouldn't make it to full term.
We scheduled an amniocentesis for week 16 to test for chromosomes to see which syndrome it actually was. The tests came back at around 18 weeks and were completely normal. We were somewhat relieved but more confused than ever. If not this, then what was wrong?
They then wanted to wait until baby got a little bigger to do another ultrasound and look closer at the heart. It was around week 20 that they found some concerns with her heart. It was then that we met with a cardiologist and he told us that she had a severe heart defect.
Gracia Lorraine Hunt was born on August 2, 2012 at 37 weeks and 2 days gestation. She was born with HLHS, or Hypoplastic Left Heart Syndrome. The problem develops before birth when the left ventricle and other structures do not grow properly. Basically the left side of the heart is underdeveloped and unable to send enough blood to the body. As a result, the right side of the heart must maintain the circulation for both the lungs and the body, but the heart isn't connected to the arteries and veins in a way that will sustain this for long. The right ventricle can support the circulation to both the lungs and the body for a while, but without surgery, all this extra work for the right side eventually will cause the heart to fail.
So, our Gracie Girl, as we liked to call her, would need to have 3 different surgeries within the first 3 years of her life, one being within the first week after birth, the second being around 4 months and the third at about 3 years of age. These surgeries will slowly reconstruct her heart so that the right side of her heart can function on its own and do all the work that is missed from the left side.
On August 8th Gracie had her first open heart surgery called the Norwood procedure. After surgery her vital signs and cardiac output were all acceptable, however the amount of medication needed to keep her stable was higher than the doctors were comfortable with. In order to help support her body's needs and maintain a better balance of meds, additional measures were recommended.
During the procedure on her heart the surgeons had to bypass the heart entirely for blood circulation in order to perform the operation. They relied on a machine, the ECMO, to essentially perform the same functions of the heart. It would take blood from the body, oxygenate it and then pump it back throughout the body. Typically following the procedure with Hypoplast patients, they are able to be weaned off the ECMO within hours after the surgery, given their body is fulfilling all its needs. In this scenario the doctors thought it best to keep Gracie on the ECMO for a week. After 7 days of being on ECMO, she did remarkably well without it.
This was our first of many setbacks. Gracie later had to go back into the OR for different surgeries and procedures such as getting a broviac central line put in two separate times for all her extra IV's, getting a tracheostomy for the extra support she needed in order to grow, and a gastrostomy-jejunostomy tube, or a GJ tube for feeding. After the tracheostomy was put in, Gracie developed infections and pneumonia but fought these like a trooper.
In early October, Gracie was doing great and she was being weaned off of so much medication that we finally talked about getting to go home and I decided to leave my full time corporate job since someone would need to be home with her 24/7 for medical reasons. Soon Gracie had yet another setback and crashed so she had to go back on all of those medications. All these things never seemed to phase her. Despite all of the setbacks and the incredible amount of sedation that she was on, she was always such a happy baby, so bright eyed and alert, it was amazing. My favorite picture of Gracie is one where we have her sitting up in her hospital bed, she has a cute little dress and hair bow on her head, she is staring right at Grandpa's camera, her eyes and mouth are wide open and she is telling you a story with the bright expression on her face. She loved so much to sit up and look around the room and see that there is more to this little world than just the ceiling and IV's laying next to her head.
On October 23, 2012, I got a phone call from Children's Hospital in Minneapolis at 3 in the morning. The nurse told me that Gracie's heart rate was very low, in the 80s, and told me I should come in. I threw a sweatshirt on and headed down through the rain and lightning. I got up to her room and a lady explained to me that she had been getting compressions for the past hour and they were prepping her to go back on ECMO.
I watched through the window outside her room. The nurses were pumping and pumping her little chest. I watched for a long time praying and praying that this wasn't it. One of the doctors came out and told me that they couldn't find any arteries to put the ECMO into and explained that an ultrasound had specified that her heart was not pumping at all. The doctor asked me to call it but there was no rush. So I called it.
Gracia Lorraine was gone at 4:55 am.
The past few months have been so incredibly hard and I miss her so much. No parent should ever have to feel the pain of losing their child, and you know what the pain never really goes away and every day I wake up and don't want to get out of bed, but The Lord has so much planned for my life. He has blessed my family with this miracle baby and he has also Graced me with a special talent. In Romans 12:6 it says "In his Grace, God has given each of us different gifts for doing certain things well." God made me an artist and Graced me with the talent of Cake Decorating and Baking. In December of 2012, I started thinking of a way I could honor Gracie and share her story. I've started a business called "Cakes From Grace." In addition to making cakes for Weddings, birthdays, showers, and any other occasions; I wanted to give. A big part of what "Cakes From Grace" is all about is donating cakes to Events and Organizations that raise awareness about Congenital Heart Defects. Part of my Mission is to put smiles on the faces of kids born with CHD's through the cakes we donate to CHD organizations such as "Lasting Imprint." I also discount cake prices for every Heart family.
"Cakes From Grace's" name has a very special meaning, not only is it my daughter's name, but I am making every cake in honor of her. When I had Gracie I dreamed of all the thousands of cakes that I would be making for her throughout her life. I am still going to make those cakes and I believe she has a part in all of them. She is my inspiration, my muse. Not only is the name for her, it's only by the Grace of God that I have this dream, this talent, and this passion for creating delicious and beautiful cakes.
Thank you for reading my daughter's story and I hope that she will inspire you as well to make your dreams happen. My ultimate dream has always been to have my own cake shop, and someday I will have a storefront, you just wait and see!
Please like "Cakes From Grace" on Facebook and visit www.cakesfromgrace.com.
March 24, 2009
Do you have a birthday to celebrate in April? Please send us the date along with a picture so we can celebrate with you!
We also want to celebrate all your angel's birthdays! Please send us their information so we can include them as well! Email Rachel at firstname.lastname@example.org
2013 Upcoming Events
May 18th- Our Community Has Heart! - Mankato, MN
September 7th- 4th Annual CHD Awareness Walk - Alexandria, MN
PO Box 261
Mankato, MN 56002