So to begin with, our darling little Cora has a heart disorder. The left ventricle of her heart has overdeveloped muscle mass, which prevents it from filling fully and pumping her blood as efficiently as it should. While she was in the hospital, the pediatrician noticed a heart murmur, and after two echo cardiograms, they diagnosed her with hypertrophic cardiomyopathy, HCM for short. It looks like this.
While we've mostly made our peace with it now, finding out was one of the most terrifying experiences of my life. I had my seemingly perfect newborn in my arms, but people kept coming in to our hospital room and checking her, hooking her up to monitors, calling each other and talking about her, most of them without giving me very much information at all. Newborns, in my opinion, should not be doing a single thing besides cuddling with their mothers and figuring out how to eat, pee, and poop. Overall I was doing a pretty good job of keeping people out of our space before the great freak-out began. Then it was dozens of conversations with doctors and nurses, comforting little Maybe (which I was calling her at the time, since we couldn't agree on a name) while a two-hour echo cardiogram was performed, and finally dealing with the ultimate nightmare of having her transferred near midnight to Rady Children's Hospital downtown. After talking to Aaron, I very nearly refused to send her, suggesting that given her visible health, any tests that needed to be performed could be done as an outpatient in the coming weeks. But just as I had made up my mind, Aaron got the phone call from the pediatrician that I insisted on, and together they agreed to send her after all. I still felt so uneasy about the decision, but we had a friend come and give her a blessing, while Aaron gave me one as well. After all was said and done, I still think my earlier plan to do the examinations and tests as an outpatient would have worked equally well if not better, but we were on edge enough that we didn't want to put our baby at risk, and our (expensive) insurance seemed to make that the better option. Just before midnight on Tuesday night, they loaded our little Maybe into an ambulance and made Aaron and I follow along behind down to the hospital.
 |
| Rady Children's Hopsital by day |
What met us there was worse than I had expected (and my expectations were low). Two days after giving birth, they assigned me to a fold-out chair next to a little plastic bassinet in a shared room in a brightly lit hospital ward teeming with beeps and buzzes and monitors of every kind. Someone gave me some folded sheets, and it was up to me to figure out how to turn the chair into a place to both feed my baby and sleep through the constant noise. I asked for darkness and quiet, but the curtain between the sides of the room gave me only a trace of either, while the sliding glass door that provided a slight noise buffer provided barely any privacy. By the next morning, I abandoned every remaining shred of dignity and stripped halfway down to try to feed my overly sleepy baby who had been hooked up to every imaginable device to measure her heart-rate, her breathing, her oxygen concentration, etc. (and believe me, each of those measuring devices had its own special beep or buzz). Eventually some kind soul must have felt some compassion for me, because someone finally showed up with the screen that I had been requesting from the moment I got there.
 |
| I couldn't bear to take any photos of Cora hooked up to the machines, but here's the spot where she spent her time, and the chair where I slept (behind the nurse). |
Because Maybe had already been exposed to the outside world, they had assigned us to Acute Cardiology rather than NICU--a mixed blessing, as I was able to hold and feed my baby freely, but they were not otherwise well-equipped for newborns. In the morning, I met with a cardiologist who specializes in HCM patients, and who explained in detail the condition and what they were looking for in her examinations. Basically, HCM is reasonably common, is treatable but not curable, and is a primary cause of infant deaths and the explanation for many cases of SIDS. Later on, it is a cause of death for student athletes during the adolescent years as well. When mild, it often goes undetected until the time of death. Based on the results of the echo cardiogram, he said that Maybe's case qualified as mild to moderate, and reassured us that the primary causes for immediate concern, restricted flow into the aorta or arrhythmias, were not present in her case. He explained that the most common treatment for the disorder is use of the drug propanalol, which slows the heart-rate slightly, allowing the heart more time to fill, promoting better oxygenation of the blood, and improving circulation. Many patients with HCM live normal lifespans, particularly when cases are diagnosed and treated. On the other hand, the existence of a strong murmur so early gave reason to worry, because fewer cases present with a murmur than without, and diagnoses in infancy are rare. After asking our permission, he started her on the drug and started monitoring her for her response. A neo-natologist came over as well to check on the regular newborn stuff, feeding and pooping and the rest of the rigamarole. Though she seemed extra-sleepy and hard to wake for feedings, she otherwise seemed to be doing well.
I pushed the doctors for as early a release as possible, both because I couldn't help thinking that being home with her family had to be better for promoting good health in a baby than being cooped up in a hospital, and also because I was a little worried about things coming apart at the seams at home with my unexpectedly prolonged absence. Aside from everything else, I had nowhere to shower. I managed to make my meagerly packed suitcase last a couple more days, and was once again grateful for the surprising respite from daily showers that this pregnancy (and the aftermath, apparently) provided--my hair, which has always required daily washing, stopped getting oily and required washings only every few days during my pregnancy. I spent the days feeding, changing, finding food (they eventually let me order meals as a breastfeeding mom), sending texts to friends for help with rides and supervision for my older kids, and reading snippets of the Mary Higgins Clark book I had taken with me to the hospital--it was a needed distraction.
Aaron came to visit that night and had a chance to talk with the doctors as well, though he came away more alarmed than I was and suggested that I should stay as long as possible. We did manage to steal away for an hour to get dinner at the Ronald McDonald house across the street, and I came to a new appreciation for these facilities that I had heard of but never experienced before. They offered showers, rooms for naps, laundry services, and meals for families who needed them. Though we fortunately ended up not needing anything more after that first day, I was shocked into an awareness of an entire process and set of families and needs that I had been blind to my entire life previously.
Things struggled along at home in my absence, helped tremendously by friends who called constantly to offer rides and services, and to take food to my family. Despite Aaron's fears and/or wishes, after 24 hours observation on the medication, we were released, and he had to rearrange his plans to come pick us up on Thursday at noon. Though we were only at the hospital for about 36 hours, it was truly the longest 36 hours of my life, and it wasn't until days later that I realized how brief our stay had actually been. The whole thing was exhausting physically, mentally, emotionally, and spiritually, and coming home felt amazing, even if I was at work wiping down sticky counter tops and sweeping filthy floors within minutes of arriving (like I said, my release came as a bit of a surprise to Aaron, so there was no time to fake that they'd all kept everything clean in my absence!). The kids were totally surprised to come home to their baby sister, and have had their hearts completely melted by her ever since. There's a sort of domino effect to the heart-melting, because you can't imagine what happens to a parent's heart when they get to watch their often grumpy and rude teenager turn into a puddle of butter around a baby. Since getting home, things have been busy but beautiful. More on the good stuff in the next post.
 |
| Home at last! |
