Eating, Eating, Eating

Jeff and I have worked out a schedule where he tries to sleep from 9PM to 12-1AM. Then, we do our shift change, which always takes a bit longer than one would expect, and I sleep from 1-5PM. Last night, I ended up going to sleep around 2:30AM, because I had some work to do. When my parents are here during the day, at least one of us tries to take a nap. I was the lucky one today that got some sleep while my mom took care of Henry in the afternoon.

Henry didn't sleep much this morning or this afternoon. He slept for maybe half an hour on my chest. He started up the eating constantly in small doses again. This made it impossible to do his massage today; the timing wasn't right. But I did force him to spend a few minutes on his tummy, because tummy time is really important for him building up his neck and back muscles. I read something online that said that many kids today are crawling later than they use to because of the whole "Back to Sleep" prevention of SIDS. Henry sleeps often on his tummy while in the Danny Sling because of his reflux. The tummy position is actually the preferred position for the Danny Sling. One of the nurses recommended it. And, one doctor independently suggested it as well. Putting them on their back when sleeping is supposed to decrease their chances of having SIDS. So sleeping on the tummy is a concern. But we only do it when he's hooked up to the monitors. His crib doesn't have any toys in it and doesn't have bumpers along the sides (again, for SIDS prevention). We are also having him spend some time on his back. Because once he's off the monitors, he'll need to sleep on his back.

Dr. Bianchi called this afternoon. He talked with Dr. Hassan and decided that we should give Prevacid a try as a replacement for Ranitidine (his current acid blocker). The nice thing about Prevacid is that it lasts 24 hours; Ranitidine only lasts 12 hours. Prevacid is stronger, and Dr. Bianchi hopes that this will help with Henry's vomiting issues.

We weighed Henry today at 6 lbs 1/2 ozs. Jeff also used our baby scale to weigh our cats: Princess (8 lbs 4 ozs), Bits (8 lbs 10 ozs), and Jackson (8 lbs 14 ozs). We're a little concerned about Jackson. He has a tendency to stop eating when he's stressed. I'd prefer to see him weighing a few more ounces than he does. I was surprised that Princess was over the 8 lbs mark. She's usually more like 7 lbs. Bits is holding her weigh well; she's mainly muscle.

Jeff and I finally managed to give Henry a bath. He was two days overdue. The prior evenings, Henry was always eating. Then, Jeff had to get to bed (he has to get some sleep). So bath time didn't work out. Tonight around 6:30PM, Henry seemed like the bottle he'd consumed was going to last him a little while. So we moved quickly and got him bathed. He seemed to enjoy it tonight. We took his cannula off while we bathed him. And, we both agree that having the cannula off made him happy. He has been fighting us on keeping the cannula in his nose for a couple days now. At his gestational age, he is supposed to be self-soothing by putting his fingers in his mouth. He does this a little bit, but more often, his hand touches the cannula tube when he touches his face, and then he spends time trying to rip it off. He made himself upset the other day because he got his hand underneath the tubing and then pulled really hard, which made the "tender grip" pad pull on his skin as he ripped it off (it would be like ripping a really sticky band aid off one's face). Anyway, he looked super cute without his tubes. We made the bath rather quick, because we didn't want him going without his oxygen for an extended period of time. Henry was wiped out by the bath and snoozed in the towel in my arms as Jeff put on the new cannula. Henry's moved up a size on nose pieces (from the 1601 to the 1615), which means he's getting bigger. Jeff did an excellent job putting on the cannula. Instead of the "tender grips" to hold the cannula in place, we decided to go back to the duoderm on his skin and then Spiderman bandaids to hold the tubing on top of the duoderm. This should make it more difficult for Henry to take his cannula off.

My dad has been holding Henry since his bath. Somehow, my dad manages to get Henry to eat quite a bit without vomiting. He has the touch. Henry usually has a very calm disposition when he's with his Grandpa. Henry is currently sacked out on my dad's chest. It's about 10:30PM, so I think that we'll have to risk waking Henry up, so that my dad can go home and get some sleep himself.

Six Pounds!

Today Henry hit 6 pounds! He's finally closing in on what a typical newborn would weigh. A bit exciting and depressing at the same time.

Our excitement over this milestone was tempered by some major vomiting this morning. This time it was bad enough that we made a visit to the pediatrician. He advised increasing his dosage of Reglan from .2 ml's to .3 ml's. He is also going to check with the GI doctor about changing him from his current acid blocker to a different one that is stronger.

In the waiting room at the doctor's office a woman was admiring him and commenting on how small he was. She asked how old he was and I realized I don't really know how to answer that. I guess it would make the most sense to say he is 3 1/2 weeks old, based on his due date. Thankfully he isn't going to be out in public too often so we won't have to try to explain his circumstances too many times. Otherwise I might just have to print up business cards to hand out to save us the trouble of explaining over and over what his situation is.

We tried to take him for another walk tonight but it rained. In Arizona. Go figure.

Feeding him lately has become an exercise in patience. He frequently gets very worked up and will suck for a few moments before batting the bottle out of his mouth, flailing his head side to side and screaming. Wait a few moments and insert the bottle and he calms down and sucks for a few moments before repeating the screaming and flailing. Patience isn't my strong suit right now. Feeling exhausted and frustrated I said to Kate today, "How is it that the planet is over populated?" I can't imagine putting oneself through this more than a couple times in one's life.

Amazingly he is still growing despite the vomiting and flailing. One of our friends said that fussiness often precedes the development of a new skill. If that is the case I'm expecting him to create a perpetual motion machine or start speaking mandarin Chinese any minute now.

We made an appointment with yet another set of doctors today. These are actually doctors from the NICU who have a developmental clinic. Woohoo, more doctors!

Last night I took the night shift and Kate relieved me around 5am so I could go work. Henry was actually fairly restful. The problem is that before putting him to bed we have to hook him up to the apnea monitor. This requires a belt that goes around his chest under his clothes. So if we don't think ahead we find ourselves with a peacefully resting baby with no monitor strap on. To put him to bed we would have to wake him up to put the strap on. Bye bye peacefully resting baby. Last night I just let him sleep which meant zero sleep for me. I'll try to remember to put that monitor strap on earlier in the evening from now on but my mind just isn't working too well.

Henry's First Tour of the Neighborhood

Jeff was on the night shift last night. Henry didn't sleep all that much. He still continues to vomit on occasion (spit up about 15 ml of a 40 ml bottle). Amazingly, he continues to gain weight. Nurse Michael visited today. Henry weighed 5 lbs 15 ozs. He thinks that Henry looks fine.

Grandma Kenski helped out this morning, while I went to see the eye doctor. I'm not sure what we'd do without my parents' help. Even with their help, it is hard keeping everything straight. Henry still has way, way more doctors' appointments that the average full-term baby. He is currently on four medications. Those are tough because two have to be administered at least 15 minutes before he eats, one has to be given in his food, and one has to be given after he eats (and can't eat for 30 minutes). Plus, there's the oxygen to consider. On a happy note though, Henry is finely sleeping in ever so slightly longer periods of time. I suspect that most new parents find the initial period of having a baby difficult with the sleeping, feeding, and all stressful. Add 109 days of terror and sleep deprivation prior to the "baby coming home," and it is a bit waring on one's sanity. Henry finally sleeping for 45 minutes at a time is a real blessing for us.

Jeff and I took Henry for a walk around the neighborhood this evening. Henry is allowed to go outside based on NICU recommendations. But we can't let any neighbors lean over and breath on him or touch him. Courtesy of Carmen Stitt, one of the UA's fabulous graduate students, we put Henry in a Baby Bjorn. He snoozed through the entire walk.

I'm off to help Jeff with dinner. Henry's still sacked out in the Baby Bjorn! Thanks, Carmen!

Henry Houdini

Grandpa Kenski visited Henry in the morning. And, Grandma Kenski took the afternoon shift. Henry had his very fussy moments in the afternoon, but he also worked in a two hour nap as well while Grandma held him.

Henry's weight today: 5 lbs 13.5 oz

Having my parents around has been quite helpful because it allows me to get things done around the house. Today's mission was reorganizing our freezer space. Because Henry wasn't ingesting much breast milk initially (micropreemies don't eat much in the early days outside the womb), we have a backlog of frozen breast milk. I was initially inclined to do the so called "pump and dump," but everyone in the NICU said to freeze it. I think that they really push mothers to freeze it because many mothers stop breastfeeding after a few months. And, they want preemies especially to be on breast milk as long as possible. Statistics vary across studies, but something like 74% of women start off breast feeding. This drops to 34-39% after a few months. I would suspect that for NICU moms, the drop off may be earlier. Exclusively pumping for months on end is well...not fun. We had so much milk that we ended up buying a 13 cubic feet freezer because our regular freezer was filled. The NICU staff told us to ask family, friends, and neighbors if we could store milk in their freezers. Buying a second freezer seemed like a better option. I personally would find it a bit awkward to ask my neighbors if we could store breast milk in their freezers. I transferred all of the pre-diet change milk to the large freezer. Since it was discovered that Henry has milk and soy allergies, he may not be able to consume this milk. Hopefully, Henry will outgrow his allergies, and he'll eventually be able to have it. It can keep in the freezer for up to 6 months, so we'll keep it until then.

Our dog Marley was cute tonight. Well, she's always cute, but she outdid herself. Henry was screaming, and Marley circled the chair that Jeff was holding Henry in. She kept poking her nose over the edge of the chair to make sure Henry was OK. It was sweet.

Because Henry continues to be fussy and a bit "disorganized" at times, Jeff and I have implemented a Back to Basics plan of action, whereby we make sure that Henry is swaddled nice and tight in order to minimize his disorganization (e.g., arms flailing about, lack of focus). The problem, unfortunately, is that Henry is a master of getting out of any swaddling job. I openly admit that I'm not a good swaddler. I missed the evening in the NICU when Melissa J. taught Jeff how to swaddle, and when he does it, it is nice and tight. Jeff really does a great job. Even when Jeff swaddles Henry nice and tight, Henry is amazingly persistent at getting his arms out. He is quite a little Houdini when it comes to getting out of a swaddling job. As I write this blog entry, Henry has managed to get his feet out of the blankets. Jeff managed to constrain his arms, but there's no constraining the whole Henry.

A Pound Heavier

He continued to vomit quit a bit yesterday. I did the early morning (4:30AM) shift on Sunday, when he managed to do a nifty over the back projectile vomit maneuver that splattered all over our new glider!

I gave Henry his first full body massage at home in the morning. Nurse Penny had shown me a few massage techniques the day before Henry was sprung from the NICU. It is recommended to take all of the baby's clothes off while doing the massage. We plan to do this eventually. But in the meantime, we've opted for the all clothes off except diaper approach because Henry's been rather adept at squirting his father several times and his Grandmother at least once this past week. I have avoided being hit so far. Didn't want to take any chances. Grandma Kenski brought me some coconut oil the other day for the massages. Most massage oils contain mineral oil, which babies shouldn't ingest, so we are using real oil from the coconut (not scented mineral oil).

The massage yesterday went well. Henry was pretty calm. He's still guarded about his chest and abdomen. Preemies who have spent lots of time in the NICU tend to be more guarded about their bodies than full-term babies do. He actually did really well with his feet being touched. The feet tend to be a particularly sensitive spot for preemies, because of all of the needle picks that they've had to endure for various blood tests. I tried to end the massage but putting him on his tummy, but he didn't like that. The tranquil moment promptly ended at that point. I then handed him off to Grandpa Kenski for feeding.

The good news for the day was that Henry weighed 5 lbs 13 ozs. This was great because it means that he gained 1 lb since being home from the NICU. It has taken him a while to get to this point, because his surgeries really threw his eating progress off course.

Henry was rather fussy in the late afternoon, early evening. Jeff took the late afternoon shift after my mom left, while I went the mall to get some new towels. At one point, when nothing would satisfy Henry, Jeff let him cry for a little while. We know that many parents say to do this with their kids (who aren't preemies). We, however, haven't done this often because of Henry's chronic lung disease (bronchopulmonary dysplasia or BPD). There are, unfortunately, many suggestions that simply don't work when the baby is a preemie. He looks like a normal baby, just two pounds smaller. But he unfortunately has lingering problems that clearly make him unlike a regular, full-term baby. The bottom line is that we can let him cry for a little bit, but crying uses up a lot of oxygen. He doesn't have the lung capacity to recover as quickly as babies without BPD do. When the oxygen gets used up too fast, the oxygen saturation in the blood goes down. In short, when he cries, we still have to watch him like a hawk to make sure that he's OK. Yesterday, Henry did calm down for Jeff. When I came back from the mall, I held Henry, while Jeff made dinner. Henry got fussy. I tried settling him down by nursing him. Sometimes he prefers that to the bottle. He nursed for about 50 minutes with a few emesis episodes during it.

Henry had a relatively quiet evening. He actually slept quite a bit. The catch, of course, was that he wanted to be held while sleeping. Jeff did the night shift. He didn't get any sleep because Henry wanted to be held all night. We desperately want him to get some sleep, so Jeff obliged.

Jeff got me up around 5:30AM. We did Henry's massage around 7:30AM. Henry seemed like he was in a nice quiet, alert state. He didn't enjoy his massage today as much as he did yesterday. I think that he was too hungry to enjoy it. Between Henry's four medicines (all of which have specific administration times throughout the day) and Henry's on-demand eating schedule, it is hard to time these things right. I had the TV on (sound off, closed-captions on) while I was doing the massage. He seemed annoyed with me, but discovered the TV and was fascinated with "Austin Powers: The Spy Who Shagged Me." I suspect that he liked the very bright 60s color scheme. A couple nights ago, when Jeff was pacing around the living room holding Henry, he noticed that Henry's head would turn toward the TV every time Jeff changed directions. He caught Henry watching bits of "The Untouchables." Clearly, we are going to have to rethink the television programming in the living room.

Henry the Wild Man

Yesterday, nurse Michael came by and weighed Henry at 5 lbs 10.5 ozs. He initially thought that Henry looked pale. But he wasn't concerned because once Henry got peeved, his color returned to him.

In my free time, I had a fun round of talks with Schaller Anderson about why they weren't paying the $170 for the emergency anesthesia from my c-section. But let me back up. Our case manager at Schaller Anderson sent me a letter about two weeks ago saying that she assumed that I wanted to discontinue case management because she had not been able to get ahold of me. Mind you, I had talked with her three weeks earlier. Not sure what the fill-in-the-blank was going on for her to assume that we no longer wanted case management. I called her three times and left messages saying I had no idea that she had been trying to get ahold of me. She never left any messages on my voice mail and had not called Monday through Friday during the day because Jeff would have heard the call because he works from home. She finally called Friday and said that every time she called, she got a message saying that her number had been blocked from our line. But miraculously, it worked yesterday. I asked her about the $170 that Schaller Anderson had not paid for the anesthesia. She had called the claims department. Talked with someone named John C. (who wouldn't give his last name) and was told to have me call him. He couldn't talk with her because of privacy issues. This makes me of course wonder what the fill-in-the-blank a case manager is good for, if their own company representatives won't discuss the cases with them.

I called benefits looking for John C., but the woman answering the phone wouldn't transfer me. She said that she'd handle it. And, yes, they were denying the anesthesia because UPH (University Physicians Healthcare) had billed the c-section anesthesia as two line items (one for the anesthesiologist's time and one for the 2 units of anesthesia) instead of one line item. In other words, they were refusing to pay because UPH had described what they were billing them for. This was the same fill-in-the-blank that they had given me when I called them on 7/10. I said that they were being ridiculous. That I was taking care of a critical infant and that they weren't helping matters by giving me the run-around because of their nonsensical rules. The woman said that those were the rules. Essentially, she said that it was my responsibility to talk to UPH to get them to conform to Schaller Anderson's fill-in-the-blank billing practices and send things under one bill with one line item. What a bunch of fill-in-the-blanks.

I called UPH again. They reviewed the file and decided that the $170 wasn't worth pursuing. They aren't going to charge me for it. I thanked the woman at UPH and said that I realized that they were being gracious and that Schaller Anderson wasn't being responsible.

My dad visited Henry in the morning yesterday. My mom came by in the afternoon. We gave Henry a bath. He was pretty unhappy about it. I took the night shift of the Henry watch. Henry didn't sleep much.

Today (Saturday), we weighed Henry in mid-morning on our new baby scale. He was 5 lbs 11 ozs.

Jeff went to the grocery store. Brought some Sun Chips home. I had some. Then, unfortunately, I realized that they contain whey and nonfat dried milk in them. This, of course, presents a problem with Henry's milk allergy. Hopefully, this small amount won't effect him. But I've read cases online that say that even trace amounts can have them bleeding for several days after. Frustrating, because Henry has finally gone for over 24 hours without blood in his stools. Stools still contain mucous, suggesting inflammation, but the no blood is an improvement.

My mom came by in the afternoon. Henry had a nap that lasted an hour and a half (that's his new record for minutes sleeping straight). In the evening, he was a wild man. Vomited all over the place. Wouldn't settle down for the longest time. He would root, but then wiggle around like he didn't know how to suck on the nipple of the bottle. I tried nursing him. That worked for a few minutes but then he would shake his head back and forth not wanting to latch, despite making his "I'm hungry" La Cry.

Jeff and I really want to start infant massage with him. Babies who have massages on a regular basis gain weight faster than those who aren't given massages. But we can never seem to find a time when Henry is in a quiet, alert state that doesn't involve having just eaten. He's either screaming because he's hungry, drinking his bottle, content just having eaten (can't put him down horizontally for a 1/2 hour because of reflux), or taking an incredibly brief nap (in which case we don't want to disturb him).

Grandpa is holding him down. Looks like they are both taking a nap. Nice that he's finally not so crazy.

Emesis (A Fancy Word for Throw Up)

It's been an exhausting few days, but in the larger scheme of things, there isn't much to report. Grandma and Grandpa Kenski continue to come over everyday and feed Henry. On Wednesday, I left a message for Dr. Hassan (GI specialist) because he indicated on Tuesday night that he wanted to know what the ER physicians had to say. Dr. Hassan called back. I told him that Henry was switched to Neocate for fortification. He said that was the best choice at this point. He also thought that we should only be fortifying Henry's bottles twice per day. When we left the NICU, the staff said to fortify a minimum of two bottles per day, but we could fortify every feed not directly taken from the breast. Jeff and I were a little concerned about going down to only two fortifications per day because Henry's growth, while increasing, hasn't broken any records. We'd like to see him gain 30 grams per day, and he's been under that. Decreasing fortifications means decreasing calories which means slowing the weight gain process. Henry had at least one stool with blood in it, but nothing compared to Tuesday night.

This morning (Thursday), we started our day off with a visit to Dr. Bianchi's office. Henry's head circumference was measured at 34 cm. His length was 17.75 inches. And he weighed 5 lbs 10 ozs. That's a 6 oz increase from last week. Talked with Dr. Bianchi about our fortification concerns. He said he'd call Dr. Hassan to discuss the matter and get back to us. He called us later in the day to say that we could fortify all of Henry's feeds.

Someone from Dr. Bianchi's office called me to say that Henry needed to have a genetic screening done 3-4 months since his last blood transfusion. Apparently, they received a letter saying that the screening done on Henry's blood after he was born was done after a blood transfusion, meaning that the results were inconclusive because blood transfusions often yield false negatives. They wanted to know off hand when his last transfusion was. I suggested that they look at the records from UMC. The woman on the telephone seemed to not want to research it. I'm pretty sure that his last transfusion was in mid-June, but I am perplexed that they would rely on parent memories from a stressful time a few months back rather than going to the written records. It is frustrating to think that we thought he was in the clear on the genetic screens and that this may be a false negative. But we have enough to worry about with his feedings, so I'm mentally shelving the genetic screen concern for now.

Henry spent the afternoon vomiting up feeds, while my mom held him. He did a nice projectile emesis on me as well at one point. "Emesis" is one of our NICU vocabulary words. The vomiting has since subsided to mere spit up episodes this evening.

Henry had a pretty good nap on me early this evening and a good nap on Jeff later in the evening. It's nice when he actually sleeps for 45 minutes straight because that's pretty much a record for him. All in all, he rarely sleeps and feeds every 1.5 hours at a slow pace.

Jeff bought a baby scale via Amazon that arrived yesterday. We tried it out this evening. It had Henry's weight at 5 lbs 9.5 ozs. Pretty close to the scale in Dr. Bianchi's office.

Henry had a diaper tonight that had flecks of blood, but it wasn't that bad. We're hoping that the blood goes away in the next week, now that he's off the Isomil, and I'm eating very little soy (just the occasional piece of tofu). My diet is a bit of a challenge. Added to my already restricted vegetarian diet (no meat, chicken, or fish), I'm avoiding dairy (including any product that lists casein or whey in the ingredients), soy products, coffee, chocolate, and peanuts. Doing a bit of research that mentions caffeine creating fussy babies. I have also heard that peanuts are on the common allergy list, so peanuts are out the window too.

That's all for now.

An Evening in the ER

Sunday and Monday were relatively uneventful days. Henry's Grandparents came over on Sunday. On Sunday night, Jeff and I gave Henry a bath, much to Henry's discontent. On Monday, Grandpa Kenski did the morning shift, and Grandma Kenski did the afternoon shift, so that I could prepare for class. Jeff returned back to work. Michael, the home nurse, came around 10AM. Henry weighed 5 lbs 6.5 ozs. I left for class around 4:30PM (class starts at 6PM). Jeff said that Henry had two stools that contained a bit more blood than Henry's previous bloody stools. I was surprised because Henry's stools had been blood-free earlier in the day. The blood specimens had moved in size from flecks to spots.

On Tuesday morning, I called Dr. Bianchi's office. He returned my call a few hours later. I told him about the increased spots. He said, "Oh darn. You are going to have to call the GI doctor." Called the GI doctor in the morning. Left a detailed message. Grandma Kenski came by in the afternoon. Grandpa Kenski came around 6:30PM to trade off with my mom. I changed Henry's diaper before my dad gave Henry a bottle. The stool in the diaper had a significantly larger amount of blood than I had seen previously. I woke Jeff up (he had just settled down to get some sleep) and said that we needed to take Henry to the ER. Jeff looked at the diaper contents and agreed. As Jeff and I packed up the diaper bag for our trip to the ER, Dr. Hassan (the GI doctor) called. I told him the situation. He said he thought it was most likely the Isomil; he said to give him a report about what the ER doctors concluded.

We headed out to the ER, arriving around 7:40PM. Jeff dropped us off and then went to park the car. As I entered the ER, I was not prepared for the chaos inside. I had been to less than ideal ERs before. For example, the HUP ER in West Philly isn't a good place to be; it's gunshot central. There were about 60 people packed into the waiting room at UMC, many of whom were coughing and hacking. Frankly, I'd take the gunshot people over the people with communicable diseases any day. People were laying on the floor, hunched over. I was upset. After all, the NICU staff told us that Henry should not be exposed to the germs of other people quite yet. This presented us with a bit of a dilemma. On the one hand, I didn't want Henry exposed to these germy people. On the other hand, the kid is anemic, and I couldn't have him bleeding through the night. I filled out one of the forms. Tried to find a place against a wall, away from the seats. A nice man offered his seat to us. I thanked him but explained that Henry wasn't supposed to be near people. While waiting for Jeff to return from the parking lot, some teenage girl curled up on the floor about three feet from where I was standing with Henry. As soon as Jeff arrived, he ushered Henry outside, while I waited for Henry's name to be called. I called the NICU, asking them if the ER was where we were supposed to go, considering Henry wasn't supposed to be around people. They said yes. That's where we had to go.

Several minutes later, a nurse named Chris called out Henry's name. I waved to Jeff to bring Henry inside. Chris was the registration RN. He took Henry's temp (37.1 degrees Celcius), weight (5 lbs 8 oz with clothes on), and head circumference (34 cm). We gave Chris the details. Rather than having us wait in the waiting room, he put us in a small room, not far from the check in desk and screening exam areas. As we were waiting, we could hear people coughing up a storm. One nurse walked by and said to someone, "I'm trying to stay away from the kid with chicken pox because I haven't had it yet." Great. Super. We closed the door to the small room. I guess you'd have to have been there to appreciate how horrifying the scene was.

Unfortunately, I forgot to pack the nipples to Henry's bottles, so I ended up breast feeding. Very thankful that we were in the small room by ourselves rather than the waiting room. Several ER personnel burst into the room without knocking. Jeff stood near the door, so that I wasn't completely exposed to the world. Henry didn't seem phased by the noise level of the ER. Jeff said that it probably reminded him of the noises of his first home.

A doctor named Rebecca Fung (who I assume was a resident) saw us first. She had been called from pediatrics by the ER staff because the ER was so overrun with patients. We went over Henry's list of issues. It is always a chore to answer the question, "What problems did he have while he was in the NICU?" Glad that Jeff was there, because listing out Henry's history is a two person job. A second doctor named Stephanie Castrillo (who I assume was also a resident) came into the room. Then, a few minutes later, a Dr. Cleo Hardin came in and was briefed by Dr. Fung.

We showed the doctors one of Henry's bloody diapers. It didn't look as bloody as it initially was, because a good deal of the blood had been absorbed into the diaper by this point. Dr. Hardin thought it was unlikely that the blood signified a return of NEC. She said that Henry was took "vigorous" and didn't look particularly sick, other than the blood in the stool. Plus, considering that the blood had been happening for a week now, she said that was uncharacteristic of NEC, which would be more aggressive in time span. She felt his belly. He is a bit guarded about his belly (preemies have had such negative experiences with touch from being poked in the NICU that they are often guarded). Eventually, he relaxed, and she said that his belly was nice and soft (a good thing). She didn't think that the amount of blood in the stool was particularly large. The stool had a bit of mucous in it, which suggested inflammation to her. She thinks that a food allergy is the most likely culprit.

I told her that I'd cut dairy from my diet a week ago. We were concerned about the blood because it was getting worse, not better. She thought that maybe Henry was having a reaction to the increased amount of soy in his diet. So now we have a possible soy allergy in addition to the dairy allergy. I told her that Dr. Wispe had said that Henry had to have fortification to the breast milk because of his metabolic bone disease. A problem, since most fortifications are made with either milk or soy. She ended up prescribing a formula called Neocate for his fortification. Neocate is much like Simulac's Alimentum. Essentially, this formula has all of the amino acids that the babies need, but the amino acids are already broken down, so they are easily absorbed into the intestines. No breaking down of the soy or milk proteins is needed. I believe that they often give this type of formula to short gut babies, because such babies don't have the intestinal space to break down regular foods.

I told Dr. Hardin the same thing that I've told several doctors and nurses in the NICU. If I have to eat meat, I'm willing to do so, even though I haven't eaten it in 26 years. She didn't think that it was necessary. It would put a stress on my system, considering that I don't have many of the enzymes to breakdown meat proteins at this point. She said to avoid soy milk, but that tofu had less soy in it and should be OK to consume on occasion. She also suggested almonds, which are high in protein and calcium.

Dr. Hardin took a look a Henry's tongue. He does indeed have thrush. A bit disturbing because I know that he had a white tongue in the NICU, but no one in the NICU ever said anything about it. She prescribed some medication for it.

All in all, although the ER was indeed horrifying, we really liked Dr. Hardin a lot and just wished we could find a primary care physician with the same level of expertise in infant care as she has.

Nurse Chris came back to help us with our discharge papers. He explained that it was unusual for us to have seen someone from pediatrics (he initially tried NICU, but there was only one attending doctor who couldn't leave the area); it was just because of their backlog of ER admits that things worked out for us on that front. Dr. Hans Bradshaw (Henry's resident from July in NICU) stopped by to say hello. He's working in the ER this month for his residency duties.

That's about it on the Henry front. Jeff gave Henry a bottle when we got home around midnight or so. I pumped and cleaned up the kitchen. Crashed on the couch for a little over two hours. Around 4:15AM, I went on Henry duty while Jeff went to the guest bedroom to get a little shuteye that is hopefully alarm-free.

A Good Day

It's Saturday, and there isn't actually much to report. That's a good thing. Henry is rather active in the evenings, when we'd like to sleep, but I suspect that is true of a lot of newborns.

Jeff tried out the "military hold" that nurse Michael showed us last week. Michael said that they use the military hold (baby on one arm, facing down with the baby's belly against the forearm) in military nurseries. I looked online and found that it is often used for babies with colic. Michael said that he thought that babies liked the hold because there was more to look at (rather than staring up at the ceiling). We saw nurse Henry in the NICU use such a hold. Because Henry can be held with one arm, it makes it easier for lugging the oxygen tank around the house.

Grandpa Kenski came by around noon. Grandma Kenski took over in mid-afternoon. I paid bills while they watched Henry. Jeff went out, looking for a chair for the space next to Henry's crib, so that we can feed him there at night (and not have to disconnect him from his apnea monitor while doing late-night feedings).

Unfortunately, more blood was found in one of Henry's diapers. It is more than usual, but it still is a rather small amount. It hasn't been 10 days yet since I gave up dairy, so for now, we'll assume that's the culprit. I plan to call the pediatrician's office on Monday morning to let him know about it. We also think that Henry might have thrush. I noticed white stuff on his tongue in the NICU, but I assumed it was just residual milk. Hasn't gone away, so it is time to get it checked out.

Jeff and Henry are currently on the couch watching Pirates of the Caribbean. We have the sound off and have been using the closed-captioning feature, because we don't want Henry to be startled by the sounds. Other than that, it looks like a bath is in Henry's future.

The Responsive Pediatrician

Last night, I took a nap while my mom and Jeff looked after Henry. My dad switched off with my mom and brought us Mexican food. Jeff and I switched shifts around midnight. Henry is feeding every two hours, and he's a slow eater. I was able to get the occasional 20 minute nap in here and there. I wanted Jeff to get some sleep, because I thought Jeff was more sleep deprived this week than I was. I believe that Jeff got a whole 5 hours of sleep. The alarm on Henry's apnea monitor went off because of a loose connection around 5:15AM. Jeff got up when it went off. I had actually intended Jeff to sleep a little longer. I got some shut eye an hour or so later.

During my nap, my dad arrived to watch over Henry for a few hours. Dr. Moussa called while I was asleep. She told Jeff that she hadn't yet figured out the supplementation issue (mind you, she took Henry off supplementation on Monday, and it was now Friday, and he was born a micro-preemie, just about all of whom require supplementation as a necessity). Jeff told her that we had decided to switch to Dr. Bianchi. Probably best that Jeff took the call. He is fundamentally a more diplomatic person than I am. When I was on the speech & debate team in college my freshmen year, I received an award for being "The Most Diplomatic" person on the team at the end of the year banquet. Those days are long gone, I'm afraid.

My dad spent the morning with Henry, and my mom took the afternoon shift, because I had a faculty meeting to attend at noon. Henry's home nurse, Michael Jones, visited around 10AM. Henry weighed 5 lbs 4 ozs. His oxygenation was tested with a pulsocs; it was 97%. Henry was fascinated by Michael's pulsocs cord. He watched Michael intently as he pulled the cord from his bag. Each day, Henry's focus seems to grow a little bit more. We mentioned the supplementation issues to Michael, who suggested that ProSoBee might be a potential solution; my mom's friend Michelle had also mentioned this formula, which she used on one of her children who had a dairy intolerance.

Before I left for my meeting, Dr. Bianchi called. He talked with Dr. Wispe late yesterday afternoon. Dr. Wispe said that Henry absolutely has to have supplementation. He said that if he couldn't tolerate the Enfacare, then we should supplement the breast milk with Isomil (a soy-based formula). I strongly suspected that this would be the case. After all, as I told Dr. Moussa on Monday and reiterated on the telephone on Tuesday, Dr. Wispe had said that Henry needed the extra calcium because of his metabolic bone disease. His bones are fragile and need the extra calcium that he failed to get during the third trimester. What little he had was sucked out of him by the Lasix. When I talked with Dr. Moussa on Tuesday, she said that she was concerned about it too. But if she was so concerned, why did it take her until Friday to call us back and still not have an answer? Although it is true that on Monday she called the GI doctor who said it was probably a milk allergy and agreed with her about taking him off the formula supplement, the GI doctor doesn't know Henry's file from Adam and wouldn't have the knowledge of Henry's other problems, like the doctors in the NICU have. The GI doctor only knows about Henry's reflux. And, frankly, he didn't spend much time with Henry (maybe 5 minutes while we were in the NICU). Moreover, the medical literature on children with chronic lung disease is pretty darn clear that supplementation is necessary for preemies because they tend to extend more energy while breathing than do those babies without chronic lung disease. Without supplementation, Henry won't gain weight.

My intuition to switch pediatricians as soon as possible has been validated. Henry Bianchi came highly recommended by the NICU's lactation consultant (Rene) and the discharge nurse (Laura). Plus, one of the nurses (Annie) had taken her children to Dr. Bianchi. Finding a pediatrician with background in extremely low birth weight (ELBW) infants isn't easy. There are a lot of pediatricians with good backgrounds in kids in general, but ELBW infants aren't the same as other preemies. There are a whole host of issues that come along with them.

Hopefully, Henry won't have a soy allergy too. That would be very problematic. As for now, we won't worry about it. We'll cross that bridge later if it becomes necessary. I'm hoping that Henry's milk allergy is relatively brief. Jen (cousin) told me that one of their children had a temporary milk allergy. I'm hoping that is the case with Henry. After all, he'd been taking a milk-based formula while in the NICU for several weeks without any bleeding to our knowledge. It also be that I just overdid it in drinking too much milk last week, which then just pushed Henry over the edge on the amount that his system was willing to tolerate.

The meeting at my department was longer than usual (over two hours and 45 minutes). As far as meetings go, it was a good one. My department tends to be meeting-adverse, despite the fact that everyone has a good personality and enjoys each other's company. It's a small group of eight faculty members. I was surprisingly focused during the meeting. As soon as I left the meeting, however, I called to make sure Henry was OK. He was fine. My mother had switched with my dad at this point.

I stopped by Babies R Us to get the Isomil. And, I ended up buying some dietary supplements for me. I've been taking Expecta as an Omega-3 fatty acid supplement since the beginning of second trimester. Because I'm no longer eating dairy, I decided that I needed an animal source as well. So I selected a supplement that has some fish oil in it. This is a big deal for me because I haven't purposefully consumed meat, chicken, or fish since I was in third grade (when I became a vegetarian).

Jeff and I still haven't figured out how we are going to handle our work schedules. My hours are more flexible than Jeff's are, but I still need solid blocks of time to get my work done. Guess that will be one of tomorrow's tasks.

Henry apparently had slept a good deal of the day. By the time my mom left, however, he was very alert. He had a feeding marathon that lasted two hours. He again had some flecks of blood in one of his stools tonight. It wasn't much. Just a few flecks, each about the size of a felt tip pen dot. Considering that it could still be residuals from cow's milk in my breast milk (it hasn't been 10 days since I've stopped eating dairy), we've decided to hold off on calling the doctor quite yet.