Today marks Day Four of Congenital Heart Defect Awareness Week. Krueger Hat Trick Foundation will be sponsoring TEN heart patients at University of Maryland Children's Hospital, providing them EACH with a $270 Instacart gift card.
This will provide them with the delivery of the essentials that they need the most--food, personal care items, and more--so that they may focus on the needs of their Heart Warrior. (Additionally, we will be delivering yet another batch of Comfort Kits, which provide helpful items for Heart Families such as blankets, toiletries, stuffed animals, coloring books, slippers, and cell phone chargers.)
Here is the story of another Heart Warrior, 2.5 year old Grayson, as told by his mother Sarah.
"My husband and I were not trying for our third child when we found out we were pregnant. Our other two children are twins, and I have to admit I was very relieved to see only one baby on the first ultrasound.
Our twins were born 6 weeks early and required a NICU stay. With Greyson, I was picturing an easier pregnancy, delivery, and breastfeeding experience. I was picturing a normal hospital stay without the NICU, feeding tubes, and scheduled feeds--a chance to emotionally recover from the previous experience. These thoughts were exciting and something I couldn’t even imagine. However, after our 20 week anatomy ultrasound on March 15, 2018, I knew the experience I pictured would be extremely different from anything I had imagined.
The morning after our ultrasound I had a discussion with my OB that I will remember the rest of my life. 'Something is wrong with the right side of your baby’s heart. It may not be survivable.' 'Survivable,' a word that still haunts me to this day.
The following week, we received Greyson’s primary diagnosis--Pulmonary atresia with intact ventricular septum (PA/IVS) and Hypoplastic Right Heart Syndrome (HRHS) We were told this diagnosis was a critical CHD, and it was a valid reason to end the pregnancy.
My birthing plans changed significantly. Now, I would be induced, and there would be Cardiac Intensive Care Unit (CICU) stays, surgeries, procedures, and medications. All the things I had pictured about my pregnancy and delivery were now altered beyond recognition. To say I was devastated would be an understatement. I was very intensely grieving so many things: my son’s health, his future, and missing out on valuable time with my other boys.
Our heart warrior and one of the greatest loves of my life, Greyson was born via induction at 39 weeks. His prenatal diagnosis was confirmed at birth. He underwent his first cardiac catheterization on his second day of life. During this cath, he coded, and required a few minutes of CPR. I have never been so terrified or felt so helpless. Despite this awful event, the procedure was successful and allowed Greyson to skip the first open-heart surgery in the palliative series, the BT shunt.
Interstage was very tenuous for Greyson. He had several trips to the ER, 1 hospitalization for SVT with admitting heart rate of 265 bpm, and 1 additional hospitalization related to complications related to a second cath. Greyson began to deteriorate quickly at 3 months old. His oxygen saturations dropped quickly into the high 70’s and he stopped tolerating the majority of his oral feeds.
After many ups and downs, and multiple hospitalizations, Greyson had his Glenn surgery on November 8, 2018 at 3 months old. Unfortunately, he had multiple complications requiring two additional heart caths and a stent placement. We were discharged after two weeks.
Following Greyson’s first open heart surgery, we were able to return home and establish a routine. He was able to wean off of several medications in his first year of life, and we were only seeing cardiology every 3-6 months. Life was beginning to feel 'normal'.
In June of 2020, we learned Greyson had a large blood clot in his right ventricle. He was admitted for the first time in over a year, and started on blood thinners. After 6 months of anticoagulation treatment, it was evident the clot will remain. However, Greyson’s cardiology team is confident the clot will not move, and will instead become like 'scar tissue' in his unusable right ventricle. He is expected to remain on anticoagulation until his Fontan, and possibly after.
Greyson is a happy, smart 2.5 year old. He loves toy trucks, playing with and chasing his bigger brothers, “mowing” the lawn, vacuuming, eating, and camping. He is bullheaded, persistent, rebellious, hot tempered, slow to recover, brave, pain tolerant, gentle, sweet, loving, and affectionate. Some of these attributes may seem negative or undesirable, but to us, they comprise our son’s uniqueness. These are the attributes that make him our heart warrior, and they have served him well."
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