A Long Three Days

It's been a long three days. My exhaustion was highly elevated Wednesday. Unfortunately, this coincided with a computer crisis at Jeff's work, which has kept him occupied for last three days. Over the last three days, I've had about seven hours of sleep. Jeff has probably had about two hours of sleep (naps while holding Henry in his arms while I'm pumping). Both of my parents have helped. While they have been here, I've tried to manage the household duties (taking care of the pets, doing the dishes, etc) and take naps when I can.

WEDNESDAY (6 lbs 15.5 ozs)

We had a doctor's appointment with the GI specialist, Dr. Hassan, in the morning. The crisis at Jeff's work occurred right before we left. Jeff had to stay home to take care of things at work. I called my mom to see if she could come with me. Someone has to stay in the back with Henry when we are in the car. Henry can't be left unmonitored for long periods of time. The GI specialist's office was on the east side of town, about 45 minutes from where we live. Luckily, my mom was able to come. Otherwise, we'd have had to cancel the appointment, and the doctor only meets patients at the clinic once a week. He spends the rest of his time going to the hospital around town.

When Dr. Hassan came into the room, he asked us why we were there to see him. I found this frustrating. The doctors see so many patients that they have no idea why one is there. This appointment was made while we were in the NICU. It was a follow-up on Henry's reflux. Dr. Hassan was the one who prescribed his reflux medications. I find it a bit disturbing that one can prescribe medications without knowing the patient's entire medical history.

I told Dr. Hassan that he had conducted the Ph Probe on Henry and diagnosed him as having reflux. Isn't there a file that has this information in it? I also mentioned Henry's problems with changes to his fortification (Similac 24 cal in NICU to Enfacare to Isomil to Neocate). I told Dr. Hassan about Dr. Tsai's plan to switch Henry back to Similac 24 with Dr. Hassan's approval. Dr. Hassan didn't want us to make any changes to Henry's diet until he tests Henry's stools for blood. He said that Henry could be having internal bleeding (hence blood in stools), but we might not notice it. He said that there could be microscopic blood in the stools. We have an appointment with him next Wednesday. In the meantime, we'll be collecting three stool samples on different days and bringing them to that appointment.

I pointedly asked Dr. Hassan if I should be eating meat, considering that I'm a vegetarian who can no longer eat dairy or soy b/c of Henry's allergies. He said that I have to get the amino acids from somewhere. He stopped short of telling me that I needed to eat meat.

I told him my theory about NEC (necrotizing entercolis...death of the intestines). 5% of preemies in NICUs get NEC. 7% of infants have milk allergies. Yes, there is an ecological fallacy in my inference making. But when you combine it with the knowledge that 1.2% of breast milk only preemies get NEC, 2.5% of breast milk with fortifier (usuallly cow's milk fortifier) preemies get NEC, and 7.2% of formula-only babies get NEC, my inference seems pretty darn logical. I'm not claiming that the only cause of NEC is milk-based formulas or fortifiers. However, I think that it is sufficient to produce NEC in many instances. Why do 1.2% of preemies who get only breast milk get NEC? Probably because their mothers are consuming milk products. I certainly was. If I could do it over again, I would cut dairy out of my diet from the start. I believe it would have avoided the NEC scare and rounds of feeding intolerances, preventing weeks of slow or no growth to Henry. Dr. Hassan thought my explanation was plausible. He believes that all babies are allergic to cow's milk, but a smaller percentage of those babies have severe reactions. Cow's milk is for baby cows not human infants. I asked him why amino acid formulas aren't being given to preemies from the get-go. He said that the pharmaceutical companies and FDA don't have any incentives to consider that perspective and there isn't the research to back that explanation. He didn't think research would be done on it because you'd need an experiment to "prove" it. I recognized that a clean randomized experiment wouldn't be plausible (or ethical), but surely an observational study could be done. After all, there are plenty of medical treatments that are given without clean, randomized experiments behind them. Moreover, half the medications that they give preemies in the NICU aren't FDA approved for preemies.

As we left, Dr. Hassan mentioned that he thought Dr. Bianchi, Henry's pediatrician, was one of the best in town. He said that Dr. Bianchi really cares about his patients.

My body was really hurting by the afternoon. I've had aches in my legs and joints for days. And I began hurting around the lower back. When we got back to the house, I called my doctor to make an appointment and then pretty much crashed. I literally couldn't move at one point for about 10 minutes. But my mom had to go and Jeff had to work, so I somehow managed to get up to take care of Henry.

Henry had a cute little Nike outfit on when I got up. Our friend Marilyn sent it to him. We are excited that he'll finally get to wear the adorable outfits that our friends have given him. Until recently, he's been stuck in preemie-wear...too small to fit the normal newborn sizes.








My dad came over in the evening and held Henry. Jeff and I agree that Henry is neither a Mommy's boy nor a Daddy's boy, he's very clearly a Grandpa's boy. Henry had a good snooze on Grandpa. Once Grandpa left, I took care of Henry. Jeff continued to work. I napped a little bit when Henry napped on my chest. Henry doesn't sleep long, but his sleep is definitely better than it was two weeks ago.

THURSDAY (7 lbs 1.5 ozs)

In the morning, I put Henry in the bassinet. He discovered the handsome devil in the mirror. I decided that it was time for Henry to listen to music. I contemplated whether he should listen to Bach or Mozart. I settled on Buddy Holly.








This day was a bit of a blur. I think that my mom came in the late morning and stayed until late afternoon. I think that I took a nap at some point. And I got some work done around the house.

I called Dr. Tsai to update her about what Dr. Hassan said. I think that she wants Dr. Hassan to take charge of Henry's nutrition. I don't see that happening. That isn't the role that Dr. Hassan sees himself in. She feels that the Similac 24 cal would be better for Henry, because it is made with preemies in mind. She wants to know with certainty: Is Henry allergic to dairy or not? The bloody stools coincided with the change to Enfacare. But he didn't have bloody stools (visible bloody stools, that is) while in the NICU on Similac 24 cal. She got a box of the Similac 24 cal from the Similac representive. It is expensive: $150 per box. A box would last us a week.

Jeff and I took a walk with Henry around sunset.

My dad came in the evening to hold the Grandpa's Boy. I went to the grocery store. Jeff crashed for a little while on the couch.

Then, I took care of Henry after my dad left, while Jeff worked. Another long night.

FRIDAY (7 lbs 2.5 ozs)

My mom came in the morning. I slept for an hour before heading off to my doctor's office. It was probably a waste of time. My body is physically hurting, but the causes are pretty obvious...lack of sleep and poor diet. Jeff and I simply haven't had the time to put together well-balanced meals. The breast milk is really important for Henry, but the side effect is a huge drain on me. Dr. Hee decided to do a basic metabolic panel on me. I told him that I also needed a breast milk composition analysis ordered (it was suggested by the nutritionist at the Developmental Clinic). After I met with him, it took a while to get into the lab. The person ahead of me was having a break down. Once my blood was drawn, I asked the lab worker what procedures were needed for the breast milk composition analysis. She had no idea. She called Sonora Quest, but they don't do it. Dr. Hee's nurse called a lab in Phoenix that does it. But they didn't give her the procedures. Another person in the office called them to get the procedures, but the person she talked to had no idea that the lab even did a breast milk composition analysis. Long story short, I waited two extra hours at the doctors. No one could find out what needed to be done. Dr. Hee said I should go home and they'd call me with the directions. No one has called yet, however.

While I was at Dr. Hee's office, nurse Michael came. He thought Henry looked much bigger. He weighed him at 7 lbs 2.5 ozs. He said that Henry's lungs sounded good.

Grandpa came in the afternoon. I took a nap. After Grandpa left, Jeff and I took turns with Henry. Jeff made dinner. Jeff is holding Henry now.