The Pratt's Guide to Heart Warrior Parenting

The day before our second discharge-when we were initially scheduled to leave, I walked into the unit with a car seat and a stroller. Liam was screaming in his bed with a nurse about to attempt a blood draw for the second time. I asked the nurse why they needed a blood sample on discharge day and she let me know he spiked a fever a few hours before- automatically barring us from our planned jail-break. The disappointment and frustration at not being informed earlier was profound. In tandem with a poor needle-stick (just one of the many failed attempts throughout the 12 day stay), I was beyond angry- I was ready to throat punch someone. I sat with Liam in my arms and soaked him in my tears. They were tears of disappointment for Liam and our family’s plan to be all together that day at home, but there were also of tears of self-pity mixed in. I cried because I was stir crazy. I cried because I just wanted to be a normal mom with a healthy baby. You won’t see that kind of cry face on a s...

When your infant starts to look unwell what do you do? Most parents walk into a pediatrician’s office with their baby, get seen and handed a prescription, then go home to work through it. That’s normal, right? If you’re most people with a healthy kid, sure. If you’re a heart warrior parent, normal is a trip to the ER and an admission. It doesn’t have to be a big issue that sends you there, either. This week it was as simple as a twice daily 0.5 mg dose of a diaretic that sent Liam into a respiratory spiral (med fact: diaretics cause you to pee- that fluid is pulled from everywhere in the body and for heart babies, diaretics are prescribed to pull fluid from around the lungs. When the diaretic is discontinued prematurely, fluid around the lungs builds up and can create enough pressure to make it hard for them to breathe). 1 mg of 1 drug per day is enough to send a heart baby into the PCICU. That is our new normal. It doesn’t have to be a drug miscalculation- it can be as little as a UTI...