The Pratt's Guide to Heart Warrior Parenting

It’s no fun when your baby has Rhinovirus (i.e: a cold). The most you can do is gear up for a few long, congested nights and dream of the day when a head cold doesn’t mean a week of sleep deprivation for the entire household. It’s not fun, but that’s as bad as it gets. For single-ventricle babies, however, Rhinovirus means a hospital stay. There’s a lot of medical reasons why, but the gist of it is that respiratory trouble equals oxygenation trouble and oxygenation trouble affects the entire body. So, Liam needs help getting enough oxygen and, until the cold passes, he’ll be under close observation and on some amount of “flow,” though it may very well be longer. More on that in a minute. While it is easy to feel sorry for ourselves- after all, we are 3 for 3 on celebrating holidays in a hospital room- he doesn’t have RSV (very bad for CHD kids) and we do have the best pediatric cardiologists and nurses watching out for our son 24/7 (God, I really hope we’re not here for a whole week)...

Watching your baby go through open heart surgery is difficult on a variety of levels- the stress and struggle is constant and the emotional casualties can be lasting. Studies indicate parents of CHD children are at higher risk of PTSD among other issues like anxiety and depression [ Mental Health ]. Other studies indicate parents’ health related quality of life (HRQoL) diminishes immediately following a child’s open heart surgery [ Predictors of Parental QoL ] and while it can improve within 6 months of a surgery, that positive change is largely determined by how well the child is faring. So it should come as no surprise, as we gear up for Liam’s Bi-Directional Glenn procedure [ What is the Glenn? ], we are filled with anxiety.  People like to ask us how risky the Glenn procedure is and while it’s a less complex, less risky surgery than, say, the Norwood (1st surgery), it’s still an open-heart surgery. There are no guarantees and no golden tickets, but then again, when is there ev...

When I returned to work 3 months after giving birth to my daughter, Eliza, I was heartbroken. I handed my sweet baby to a person who was, at that time, a near stranger and then drove to my job in tears. So it has gone (sans the tears) for the last two years and some change.  I must repeat this process yet again with Liam in mere hours. The only difference this time is instead of sending Liam off to daycare, he’ll be staying home with my husband- which is nothing short of a saving grace. Interstage is a time of near isolation to avoid any and all contagion with only small spurts of calculated risk taking the form of having people over for pockets of time. For Liam, going to daycare during this time could kill him- a banal cold might as well be Ebola, so Logan has started an FMLA leave which should be enough to get us through the second surgery and recovery. Logan’s ability to stay home does  help relieve the feelings of guilt- after all, Liam will have some amazing Dad time E...

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...

One week after bringing Liam home from an almost five week stay at the hospital, we’re bone weary, but happy. One thing we’ve learned quickly is that Eliza was an easy infant to take care of by every measure.  It has been a long week filled with sleepless nights- moreso than the average parents with a 5 week old. This is mainly due to Liam’s feeding schedule and my pumping. Unlike a normal breastfeeding mom, not only do I pump every 3 hours, I have to prepare it with formula for additional calories. Liam is on an NG tube and his feed is pumped in over a 70 minute span by machine which has to be manually shut off when complete - it will let you know by producing an obnoxiously loud beeping every second until you turn it off (the manual offers no mute option). Pump parts need to be cleaned and set out to dry and then about an hour and a half later we get to do it all over again. The intermittent sleeping is more than a little challenging for daily life and more than once the questio...

You may be surprised to learn that medical professionals, for all their expertise and extensive science-based training, are supremely superstitious. Nurses have rules about which way the lines of the baby blanket run on the bed (always vertical, never horizontal). They never ever positively comment on a good outcome, fearing an immediate reversal of said outcome. Most importantly, they never utter the word “home” in the presence of a patient (or pretty much ever), instead opting for a less than accurate phrase, “going on a field trip.”  I think the superstition is a way of feeling like they have some influence or control over a wholly unpredictable and uncontrollable job. Of course, I welcome the insights of friends in the medical field should I be wrong about that observation. The superstition has grown on me. I follow their rules about the direction of the blanket lines; I have abstained from using the word “home.” I do still commend Liam for his amazing progress with his pract...