I took care of Henry until my Grandma Kenski came from 8-10:30AM. This allowed me to get some things done around the house. Dr. Bianchi called with the results of Henry's thyroid test. Jeff took the call. Henry's thyroid level was normal, BUT his TSH level was elevated. As we understand it, this means that Henry's body has to work too hard to get his body to produce normal thyroid levels. Dr. Bianchi wants us to get Henry's blood work done again in two weeks to recheck the TSH. At that time, he also wants the hematocrit (red blood cell count) checked. We won't have the results of the genetic screen back for a week or two. Jeff told Dr. Bianchi that we took Henry off the Reglan. He didn't seem to have a problem with that.
When Grandma left, we weighed Henry at 6 lbs 14 ozs. At noon, we left for Henry's appointment at the Developmental Clinic on the other side of town.We arrived around 1PM at the Developmental Clinic. Our appointment was with Dr. Tsai. The nurse who did the initial check before seeing the doctor weighed Henry at 6 lbs. We told her that their scale was off. I don't think that she believed us at first. But it did turn out that the scale wasn't properly balanced initially. He weighed 6 lbs 13.9 ozs on the recheck. His length was 47.25 cm. And his head circumference was 35.9 cm.
Dr. Tsai was one of Henry's doctors in the NICU. We like her a lot. Her communication style is direct. She pulls no punches, even when news isn't great. We appreciate that. The Developmental Clinic is relatively new. Therefore, she is able to block hour-long appointments with patients. Usually, she meets with babies at 1 month, 6 months, and 1 year (age corrected). Because Henry's so small (even with his age corrected, he's still very tiny for a 25-weeker now over 1 month age corrected), she wants to see him more frequently. We went over Henry's diet history. She brought in a nutritionist, Jill Feldhausen, for this visit. Since leaving the NICU, Henry's gained an average amount of weight (about 30 grams per day) for a baby. That's good. But because he is small, she wants him to gain a bit more than that per day. Over time, preemies catch up with full-term babies by about two years of age. She'd like Henry to start that catch up now, rather than waiting. Given that Henry's problems with blood in the stool happened about a week or two after switching from the hospital's Similac 24 cal fortifier to the Enfacare store bought formula, Dr. Tsai was wondering if it was the fortifier that caused the problems. Although Henry hasn't been bleeding with the Neocate as fortifier, she doesn't think that it is going to provide him with some of the electrolytes that he needs. Plus, she'd like to see my breast milk fortified at 24 calories rather than 22 calories. For now, she is having us increase the Neocate in his breast milk to make it 24 calories. We'll do this increase slowly, so as not to overwhelm him. She is going to try to acquire some of the hospital Similac 24 cal (from the NICU or from the Similac representative), because she thinks it would be better for him. It is cow's milk-based. But he did tolerate it before. She'd like him on it again. She is concerned that my diet has now become too restricted, which isn't good for me or for Henry ultimately. She was thinking that I should try to reintroduce soy or milk into my diet. The concern more than anything is my protein consumption. I have said that I'm willing to eat meat. But having not eaten meat in 26 years, I probably don't have the enzymes to digest it. That would take a while to acquire.
From what I understand about nutrition, although meat-eaters like to think that the vegetarian diet is unhealthy because of lower protein levels, I think that the research shows that American meat-eaters actually eat too much protein. Just as too little protein isn't good for the body, overconsumption of protein (or any nutrients for that matter) is very hard on the body. The body, after all, has to process and get rid of excess protein that it doesn't need. Consequently, the vegetarian diet (if the vegetarian has variety in her diet) eats more appropriate amounts of protein and is thus healthier than the average meat-eater. When one is pregnant or nursing, the need for protein increases. I should be eating 80 grams of protein per day. Once dairy and soy got cut out, I know that I haven't been even coming close to this target. I eat some beans and rice and eggs, but I'm not able to keep up with 80 grams per day. The nutritionist was less worried about my calcium. My milk should be OK for Henry because my body will pull it out of my bones to make the milk fit for him. That's not great for my health in the long-run, of course. But I've been drinking rice milk and Almond Breeze (one glass has 30% of one's needed daily calcium intake) and getting it from other sources too.
Jeff suggested that rather than having me introduce soy or dairy back into my diet and see whether Henry can handle it, we use some of the pre-diet change breast milk that's in our freezer. If I start eating soy or dairy, it could contaminate my milk supply for the next 14 days. If Henry can handle the frozen breast milk, then we can assume that me going back to eating soy or dairy shouldn't be a problem for him. Dr. Tsai and Ms. Feldhausen liked this idea. They want us to run it by Dr. Hassan tomorrow, when we have our GI appointment (also at this Development Clinic).
I know that a lot of parents out there think that they've experienced reflux and sleeping problems with their children. I can guarantee that Henry is on an extreme end of both these issues that few people have actually gone through. It is hard to get this across to doctors who think that they understand, because mild reflux and sleeping issues are common. Extremities are not common by definition. One good thing about this appointment was that Dr. Tsai really listened to what we were dealing with. And, because we spent about 1.5 hours with her, she got to see Henry's eating habits firsthand. Once you see what we are dealing with, it is an eye-opener. When I say that Henry doesn't sleep much, I mean that Henry hasn't slept more than four hours per day on a "good" day. These fours hours are divided out across the day. Typically, he eats every hour. When he eats, it is really slow. Then he does a light cat nap. Then the cycle begins again. In the office, we had a 2 ounce (60 ml) bottle. He was hungry when Dr. Tsai came in. We gave him the bottle. He drank about 30 mls over 40 minutes. At the 40 minute mark, Dr. Tsai asked if that was normal. A typical baby would probably have downed 2 ounces in 20 minutes. We said, "Yes. This is what he does." Over the rest of our visit, Henry drank the remaining 30 mls. 5 mls, then stopped for 5 minutes, 2 mls, then stopped for 3 minutes, etc. Painfully slow. But this is how we've been living for the past 5 plus weeks. She said, "He's a lazy eater." She asked if we get much sleep. We said, "No." She was impressed with the fact that we've been able to survive this. Although not ideal for us, she and the nutritionist suggested that Henry is eating this way because of his reflux. He's managing to keep things down because he takes them in such small doses. This, however, is also contributing to his lack of sleep because he ends up being hungry all of the time. Once he is able to take more in his stomach, it will sustain him longer, and he'll be able to sleep better. At some point (soon hopefully), she wants us to push him on his eating. Make him wait a little longer so that he feels compelled to eat more at any one feed. However, because he is "fragile," she doesn't want us to push him quite yet. She could tell that Henry has Jeff and me well-trained. Henry continued to take his 2 mls here, 4 mls there, throughout our discussion. Dr. Tsai said it was like Henry was sipping a martini over cocktail hour.
As far as development goes, preemies tend to be stiff in the legs and arms. During their NICU stay, their arms and legs aren't flexed, as they would be in the womb. We need to encourage Henry bending his legs and arms, so that it feels more natural to him than the straight leg and arm positions. She asked if he disliked tummy time. I said, "Yes. He hates it." She wants us to have him do it, even if it is only for a few seconds here and there. She said that babies muscular development begins with the head and then goes to the torso and then to the legs. She decided not to play with Henry too much during this visit. But she did put him on his tummy. He did much better than she had anticipated. She looked rather impressed with his ability to hold his head up while on his stomach. We'll continue working on tummy time at home. We were very happy with our visit with Dr. Tsai. This is the kind of attention to detail that we've been craving.
My mom was at our place when we came back home. She helped with Henry from 3:30PM to 6:30PM. We watched Oprah today. It was on autism. Jenny McCarthy was the guest. She has written a book on her experiences with her son, who has autism. His autism symptoms appeared when he was about 2 (incidentally after his MMR shot). It was an interesting interview. She pleaded to doctors to take the time to listen to mothers. She felt that doctors often don't listen and take a one-size fits all approach to medicine. I could certainly relate to that. In the NICU, the nurses and doctors would say that "Every baby is different." But it didn't seem like they did much tailoring to these differences when it came to treatments. Jenny McCarthy talked about how children with autism can learn, but their wiring is different from other children. She's worked hard to find different learning strategies that work for her son. For example, he didn't understand how to play ball. She'd throw a ball at him, and it would just bounce off him. She and one of his therapists videotaped her playing catch with the therapist. They showed the video to her son, and then he got the concept and was able to play ball with her after that. That is certainly something to keep in mind with Henry. Among other things, Henry is at increased risk for autism because of his extreme preemie status. Because he didn't have the comfort of the womb during the last trimester, the wiring of his brain is bound to be different than typical children. Many micro-preemies, at the very least, end up having ADHD (attention deficit), which is often attributed to the unique wiring of their brains caused by being exposed to sights, sounds, and overstimulation at such an early gestational age.
Jeff and I took Henry for a walk at dusk. I held Henry this time. He was good, but he got annoyed about halfway through the walk because he decided it was time to eat. When we got back, my dad had arrived and was ready to feed and hold Henry. Jeff went to sleep around 8:15PM. I got him up around 1AM, so that I could pump, clean up the kitchen, and write this blog entry. Henry did very well on eating. His Tuesday total was 596 mls. He took a deep nap on my dad's chest. He ate and slept on me for a while. And, he ate and slept for Jeff. His sleep is certainly getting better. He might exceed the four hour sleep total today! Wouldn't that be great. He's eating right now. Hopefully, he'll get in an hour nap during Jeff's shift. That's all for now.
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