Gracia Lorraine was born on August 2, 2012. 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.
On August 8th Gracie had her first open heart surgery called the Norwood procedure. 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. 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. 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. 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.
Gracia Lorraine was gone at 4:55 am.
The time since we lost Gracie has 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. In December of 2012, I started thinking of a way I could honor Gracie and share her story. I’ve started a nonprofit organization called Cakes From Grace. We donate cakes to families effected by Congenital Heart Defects. Whether a heart family wants to celebrate a milestone, a surgery coming up, an anniversary or birthday, we want these kids to have a special cake to celebrate with.
Watch my Gracie’s Story & CHD Awareness video: https://youtu.be/LCquIc0RT2c
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