Crumbly Day

When Lentil was nine days old, her pediatrician heard a murmur in her heart which we had diagnosed the next day as a ventricular septal defect. She has a small hole in her heart, near her left ventrical. Her cardiologist at Children’s Hospital Oakland says that in about 50 percent of cases, the holes close themselves. Another percent will close, but not entirely, yet pose no risk to the person as she grows. The rest require surgery.

At CHO, Lentil first had an EKG to confirm the murmur, then she had an echocardiogram to get a picture of what was really going on in there. Her hole is about 3mm (I think).

The doctors told us to watch her breathing, no small feat since newborns breath eratically. We also knew that if she were to get sick, she could become much sicker than other babies because her heart and lungs are working harder than other babies’. The news was devastating but with time, we have seen her be healthy and thriving, and met someone from each of the categories of VSD who are thriving adults. Still, we watch her carefully and freak out a little when things happen because we aren’t sure if whatever’s going on is related to the VSD.

In early December, she had a stuffy nose that cleared up after a couple of days. Then we took her to Truckee where the altitude made her grousy. (She may have had a touch of altitude sickness.) This past week, she got a diaper rash. Then she started throwing up. (Lentil’s end to end yuckies) Initially I thought the vomit might have been in response to how badly the diaper rash hurt when we changed her. But we decided to take her to the doctor on Saturday when she threw up repeatedly on Friday. We took her to her pedicatrician on Monday, seeing another doctor in the practice who was thorough and deliberate in her review of Lentil’s condition. We agreed to watch her closely though I was ready to take her to Children’s (okay, I was ready with the first vomit but let’s not panic). When we took her in on Tuesday morning for her follow up, none of us was happy with how our baby looked — very pale and thin. She was more listless than normal, having a difficulty waking. We didn’t see any of her usual smiles.

Her vomiting led to weight loss and dehydration — any weight loss is serious when you don’t have much to begin with. When the scale showed a drop of an ounce and a half from Monday to Tuesday, our pediatrician sent us to CHO. I was relieved.

The pediatrician called ahead, a boon as we got there at 9:45 and were in a room by 10am. The waiting room was filled to overflowing that day with kids. It’s winter, one of the nurses said, and lots of kids have chest colds and fevers. There was a boy with sickle cell anemia, a disease that Mister and I only knew had to do with blood. We asked our second nurse about it as she was discharging us. Life expectancy for those children isn’t past their 30s at best. It is a painful disease, she said, because the blood isn’t moving oxygen around which causes blocked blood vessels, among other things.  We were in line for the ultrasound to determine if Lentil was suffering from pyloric stenosis, a condition in which a muscle in the stomach is too narrow for food to exit properly. The baby projectile vomits several feet, which Lentil was not doing. It generally presents when the infant is 4-5 weeks, not nine weeks as Lentil is.img_0281

The nurses put a saline block in her hand so that they could pull blood and adminster an IV. They wrapped a lot of tape around the block to keep it from moving and put a board on her hand and a little “house” over the unit to protect it. It was a horrible process for her, leaving her hoarse from crying and without the hand she sucks for comfort. Later, I talked to a friend whose daughter has a condition that requires exhausting and painful annual tests. We both marveled at the other’s situation and hope neither worsens.

Lentil had another echo to determine whether the VSD had a role in her illness (it didn’t). Blood and urine tests that confirmed dehydration (duh) but showed nothing else.

The doctor ordered a 10cc bag of saline for her which, though it looked like something for a child’s Barbie, perked her up enough to nurse with a bit of vigor. She had another 20cc before we went home. It was like Lentil woke up from a long nap. We went home at 5:45. The sickle cell boy was being admitted.

Today she woke, stretched, and smiled. She’s nursed like mad, slept like a log, and smiled.

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One response to “Crumbly Day

  1. How awful for you all. (((((((((((((hug)))))))))))))

    I’m pleased that she back on fighting form.

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