Little Lu's CHD Journey: The Rollercoaster Continues

A few days after my last entry, Lu's health went downhill. She started throwing up 3-4 times a day, and not like baby throw-up. This was intense vomiting. She would gag, turn red, let out a huge belching noise, and then puke up the entire contents of her stomach. She would then try and catch her breath, cry a little, swallow a few times, and then smile (very Lu and very misleading). The vomiting didn't just scare the crap out of me, inflict pain on my poor baby, and make her lose weight. It also concerned me, and her doctors, because we were not sure if she was absorbing all of her medications. She has vomited like this before (something we thought was a side effect of all her meds and reflux, which she was on Zantac for) but not very often. She was now doing it after almost every feeding.

After the vomiting worsened, she also slowly started eating less volume each day so I knew her weight would be significantly less the next time we saw the doctor. We saw her pediatrician on the 20th (the day before she started vomiting) and she weighed 10lbs.11oz. By the 24th, she had lost an ounce and was very sick looking. I went to the pediatrician and demanded a referral to a GI specialist and ultrasound of her stomach. That same day we went to the hospital for the ultrasound. I had to starve her for a few hours but it was no big deal since she didn't really want to eat anyway. The test was on a Friday and by Monday she has lost another 7 ounces. The results of the ultrasound came back as "highly suspicious of pyloric stenosis" which meant immediate surgery. Pyloric stenosis is when the sphincter muscle, that allows the stomach to empty into the small intestine, is too tight. This lack of gastric emptying results in vomiting, loss of appetite, weight loss, and dehydration. Normally a surgery like that could be performed locally and pretty simply but since Lu has a heart condition, we were told to go to the ER at the Florida Hospital Walt Disney Pavilion in Orlando. On the way over, I was pretty scared. A part of me was relieved that we had found an answer and a part of me was very overwhelmed at the thought of Lu having surgery with her heart condition. Lu slept almost the entire way so my mind wandered a little. Could this really be a separate issue? I found myself thinking about how well I had taken care of myself before, during, and after my pregnancy and wondered why my daughter had so many serious health problems. I tried to stay positive as I stroked Lu's hand and watched her smile in her sleep.

After spending about an hour in the ER, the doctor came back and informed us that their radiologist had looked at her ultrasound and did not find pyloric stenosis. A feeling of relief overtook me but I also felt discouraged that our answer was taken away. Why was she so sick all of a sudden? Was it her heart? Her reflux? A number of possibilities ran through my head. I knew she was in pain after eating and I knew she was smart enough to correlate her pain with her bottle. Was her lack of interest in eating a behavioral issue now? But what about the vomiting?

They took some of Lu's blood and started IV fluids (something that took way too long and really upset us both). One of the tests they ran on her blood was to see her Digoxin level (her most recent heart med). It came back pretty high, something I don't fully understand still, but it has something to do with absorption and the amount of food she was getting. They admitted her to the Pediatric Cardiac Unit that night and scheduled an Upper GI Series for the next day.

The Upper GI went okay. They wouldn't allow Lu to eat for four hours, again not an issue, but when they gave her the bottle of barium, they only let her drink less than an ounce, which teased her and upset her so she cried and kicked a lot. Three nurses had to hold her down, which upset her even more. They got a good picture of the barium coming back up the esophagus (confirming the reflux we had suspected) and it also went right through the pylorus (totally ruling out pyloric stenosis). The radiologist couldn't document normal bowel function because Lu was moving around too much to get a good picture but she was almost certain that there were no problems there. So the result was reflux. Now it was time to develop a plan.

We saw the GI Specialist and he increased her Zantac to 3x a day instead of twice and came up with a good feeding regime to test out during our last night at the hospital. They gave us some Enfamil 24 calorie premixed formula and we added 1/2 tsp of cereal per ounce to thicken it up and give her more calories. We tried it overnight and Lu loved it. She also did not throw up at all. It smelled really yummy and I thought the taste might get her over her aversion to eating. We also decided not to put her meds in her bottles so that they would not ruin the taste for her and make her associate bad taste with eating. All this was encouraging except for the the fact that you could only buy this formula online and it was very expensive (48, 2 oz. bottles costs around $120 plus shipping). Afraid to ruin the good thing we had going, we forked over the cash and bought enough for about 2 weeks if we mix it with breast milk. The goal is to slowly ween her off of the formula that she loves and back onto a fortified version of my breast milk (we mix 1 tsp of powdered formula per 3 oz. breast milk to add calories). The nutritionist gave us a recipe on how to make normal powdered formula into the same 24 calorie formula that they gave us and insisted it was exactly the same but it looked and smelled different plus this was the exact recipe that we were following before when she was throwing up.

We are going to follow up with the GI and if this plan is not working we will discuss other causes of her problems. There is also the possibility of a protein or lactose allergy but so far she is tolerating the formula and breast milk pretty well.

We are also following up with her cardiologist soon. I am still unsure about the role her high Digoxin level played in the whole mess. They skipped a few doses while in the hospital but then started her back up on the normal dosage when she was discharged. Another concern I have is that the admitting nurse accidentally wrote that her prescribed dose of Digoxin was 1.2mL instead of 0.5mL. We did not discover this mistake until 5 minutes before we were discharged and although we let the doctor know of the mistake, I still fear that this mistake could have affected how the doctors would have treated her while in the hospital. I wonder if they would have lowered her dosage more at discharge so I will bring it up to the cardiologist.

It has only been less than 2 days since she was discharged so we are still monitoring her progress but she weighed in at 10lbs.8oz. today which is a 5oz. increase in 3 days and she has not vomited since the night before we brought her to the hospital. Her ounces per day has increased from about 8 oz. a day (when she was at her worst) to about 13-14 oz. a day. Our goal is around 18oz. a day, which is lower than normal for a baby her age but made up for since we are on a 24 calorie/ounce formula instead of 20 and adding cereal to her bottles. Hopefully we can reach that goal after her Zantac dosage has kicked in.

Fingers crossed!