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.
Friday, August 31, 2007
Wednesday, August 29, 2007
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.
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.
Saturday, August 25, 2007
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.
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.
Friday, August 24, 2007
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.
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.
Thursday, August 23, 2007
A Little More Blood and Looking Gray
I was on Henry watch last night from 2:30AM to about 6AM. I had passed out on the couch from 10PM to 2AM, so Jeff was on-duty during that time. During my shift, Henry didn't sleep at all. Nothing would make him happy. He just couldn't settle down. He went through quite a few diapers. And, unfortunately, I found more specks of blood in his stools. At 6AM, I woke Jeff up because exhaustion was setting in. It's hard to take care of Henry but then to have to run and pump breast milk every three hours, especially when Henry won't sleep.
The more I thought about the pediatrician situation, the more unhappy I was. Jeff and I talked about it this morning. By noon, Dr. Moussa hadn't called. I didn't realize that she was only working part-time, which I assume must be the case considering that she wasn't there Wednesday or Thursday. I don't know why she told us to call when she wouldn't be there. I found out last week that our cousins had had a similar experience with Dr. Moussa not being available much, so they switched to another pediatrician in town.
Henry was looking gray this morning, which isn't a good color for anyone, let alone a baby. So, I called Dr. Henry Bianchi's office to see if he was still willing to take Henry on as a patient. His nurse called me back. She said that he was willing as long as we got the immunizations (which we already did). They didn't have any regular openings this afternoon, but given our concerns about Henry, made room for him at 2:30PM. We had 45 minutes to pack everything up and get over to the office. Luckily, it was only about 20 minutes away (much closer than Dr. Moussa's office).
Dr. Bianchi's practice is small (just him and another doctor). There are two waiting areas (one for sick children and one for well children). I filled out a couple forms, gave the co-pay, and we were ushered into the back within a few minutes (quite different than our two 45 minute waits at Catalina Pediatrics). Bianchi's assistant, Shawn, was nice. She took Henry's measurements and his temperature (for some reason, they didn't take Henry's temp at Catalina Pediatrics). He only gained an ounce since Monday, weighing 5 lbs 4 ozs. Henry peed on the scale.
We were then taken to another office to meet with Dr. Bianchi. He obviously didn't have all of the background from UMC, so we had to fill him in on everything. He described Henry as a "miracle" and "feisty." He's going to call Dr. Wispe to discuss supplementation and said that he'd get back to me tomorrow on that issue. I gave him Henry's most recent diaper with stool. He had it checked for blood (there was not obvious signs of blood but they can check it microscopically). The stool didn't have anything in it, which is good. As far as allergies go, he said to continue with my no-dairy diet. He said that it takes about 10 days for the diary residuals to leave one's system, so it could take a while. As far as possibly using soy supplements, we are holding off until he talks to Dr. Wispe. He said that 20% of kids who have diary allergies also have soy allergies, so that could potentially be a problem.
He gave Henry a thorough exam. By this point, Henry's color looked just fine. Henry was peeved during the exam, so he turned a nice rosy color. I mentioned him looking gray earlier. Dr. Bianchi said to call him if it happens again. He had us schedule another appointment for one week from today.
That's all on the Henry front. My mom just arrived to hold Henry while Jeff and I get some work done.
The more I thought about the pediatrician situation, the more unhappy I was. Jeff and I talked about it this morning. By noon, Dr. Moussa hadn't called. I didn't realize that she was only working part-time, which I assume must be the case considering that she wasn't there Wednesday or Thursday. I don't know why she told us to call when she wouldn't be there. I found out last week that our cousins had had a similar experience with Dr. Moussa not being available much, so they switched to another pediatrician in town.
Henry was looking gray this morning, which isn't a good color for anyone, let alone a baby. So, I called Dr. Henry Bianchi's office to see if he was still willing to take Henry on as a patient. His nurse called me back. She said that he was willing as long as we got the immunizations (which we already did). They didn't have any regular openings this afternoon, but given our concerns about Henry, made room for him at 2:30PM. We had 45 minutes to pack everything up and get over to the office. Luckily, it was only about 20 minutes away (much closer than Dr. Moussa's office).
Dr. Bianchi's practice is small (just him and another doctor). There are two waiting areas (one for sick children and one for well children). I filled out a couple forms, gave the co-pay, and we were ushered into the back within a few minutes (quite different than our two 45 minute waits at Catalina Pediatrics). Bianchi's assistant, Shawn, was nice. She took Henry's measurements and his temperature (for some reason, they didn't take Henry's temp at Catalina Pediatrics). He only gained an ounce since Monday, weighing 5 lbs 4 ozs. Henry peed on the scale.
We were then taken to another office to meet with Dr. Bianchi. He obviously didn't have all of the background from UMC, so we had to fill him in on everything. He described Henry as a "miracle" and "feisty." He's going to call Dr. Wispe to discuss supplementation and said that he'd get back to me tomorrow on that issue. I gave him Henry's most recent diaper with stool. He had it checked for blood (there was not obvious signs of blood but they can check it microscopically). The stool didn't have anything in it, which is good. As far as allergies go, he said to continue with my no-dairy diet. He said that it takes about 10 days for the diary residuals to leave one's system, so it could take a while. As far as possibly using soy supplements, we are holding off until he talks to Dr. Wispe. He said that 20% of kids who have diary allergies also have soy allergies, so that could potentially be a problem.
He gave Henry a thorough exam. By this point, Henry's color looked just fine. Henry was peeved during the exam, so he turned a nice rosy color. I mentioned him looking gray earlier. Dr. Bianchi said to call him if it happens again. He had us schedule another appointment for one week from today.
That's all on the Henry front. My mom just arrived to hold Henry while Jeff and I get some work done.
Diaper Genie Diving, Medication Questions, and Fabulous Eyes
On Tuesday, Jeff found a little blood in a stool during a morning diaper change. Jeff 
and I reached the unpleasant conclusion that we had to go diaper genie diving to see if Henry had had blood in his other stools and we missed it. Once we got Henry to sleep, we unloaded the diaper genie, put on some gloves, and inspected his old diapers. The diaper genie is a nifty little device that wraps up each diaper in a bag by twisting the bag after you put the diaper in it. The end result is a very long garbage bag with twists around each diaper. We diligently went 
through his diapers. We found five possible blood suspects. It was kind of hard to tell because some diapers were a few days old. But all in all, it doesn't look like Henry has had much blood in his stools...thank goodness. I have stopped eating all dairy products, which is hard. Hopefully, the blood is the result of a milk allergy, so we can just move on (rather than being left in limbo).
We did a little bit of tummy time in the afternoon. Jeff and I held the dogs and cats back from inspecting Henry. Bits, our kitten, was particularly interested in Henry and tried to bop him on the head. I think that she thought he was a new toy. We stopped her before she could touch him.
Henry gets three medications: Reglan (4 times per day), Ranitidine (2 times per day), and Poly-Vi-Sol (once a day). I came across some information on the internet that claims that in some cases, Reglan has had long-term neurological side effects. I called Dr. Moussa to ask about this. Got a call from a nurse, who seemed pretty clueless (about Henry and about Reglan side effects). Eventually, she came to the conclusion that I needed to talk with Dr. Moussa, who called me in the evening. She wasn't convinced that the Reglan side effects are anything but short-term. She said that she tried taking one of her preemies off it, and he ended up spitting up a whole bunch, so she put him back on it.
My parents watched Henry for a few hours on Tuesday evening, so that Jeff and I could get dinner at a nearby restaurant and stop by the grocery store.
On Wednesday morning, Henry had a eye doctor's appointment at 1PM with Dr. Banuelos who saw Henry in the NICU in July. The staff at the eye doctor's place were quite good. One nurse seem particularly informed. As it turned out, she (Sonia) had an infant born Henry's size less than two year ago (also was in the NICU at UMC for 100 days). Sonia let us stay in one of the back offices while Henry's eyes were being dilated rather than sending us back to the waiting room. She was very sensitive about the fact that Henry shouldn't be around a room of people. Dr. Banuelos does a lot of infant eye screenings around the city. She remembered me and Henry. She hadn't met Jeff before, but she remembered meeting Grandpa. I held Henry while she inspected his eyes. Jeff decided that it was best if I held him. The eye inspection wasn't exactly pleasant because she had to pry open Henry's eyes with a Clockwork Orange device. But the inspection itself was rather quick. She said that Henry's eyes looked "fantastic" and "fabulous." It appears that the laser surgery did the trick. He is, of course, at risk for some other eye problems and will most likely need glasses. But for now, things are fine. We'll be seeing her again in 3 months.
Jeff called Dr. Moussa's office at 4PM. At our appointment on Monday, Dr. Moussa said that we should call her Wednesday afternoon. When I talked with her Tuesday, she said that she'd talk with us the next day. Well, Jeff called the office. They wanted to know the reason for the call. He said that Henry has had bloody stools, and we needed to follow-up with Dr. Moussa about his formula supplementation. When we bottle feed Henry, we fortify the breast milk with Enfacare (1/4 tsp formula to 45 mls breast milk). Dr. Wispe and other neonatalogists said that this was necessary for Henry because of his metabolic bone disease (bones weak because calcium is usually infused into the bones during the last trimester). The formula is a cow's milk based supplementation. When Dr. Moussa said to eliminate dairy, that included the supplementation. She was going to investigate other options and get back to us. A doctor from Catalina Pediatrics called back, concerned about the bloody stools. Jeff explain the situation. The person said that Dr. Moussa wasn't in this afternoon and wouldn't be in on Thursday either. We are perplexed over why she said to call Wednesday afternoon if she wasn't going to be there. We hoped that she'd call in the evening (as she did the night before), but no luck. Hopefully, she'll call tomorrow. Otherwise, we'll have to pursue other options. After the mess at Generations Healthcare with my OB, I don't want to take any chances.
and I reached the unpleasant conclusion that we had to go diaper genie diving to see if Henry had had blood in his other stools and we missed it. Once we got Henry to sleep, we unloaded the diaper genie, put on some gloves, and inspected his old diapers. The diaper genie is a nifty little device that wraps up each diaper in a bag by twisting the bag after you put the diaper in it. The end result is a very long garbage bag with twists around each diaper. We diligently went 
through his diapers. We found five possible blood suspects. It was kind of hard to tell because some diapers were a few days old. But all in all, it doesn't look like Henry has had much blood in his stools...thank goodness. I have stopped eating all dairy products, which is hard. Hopefully, the blood is the result of a milk allergy, so we can just move on (rather than being left in limbo).
We did a little bit of tummy time in the afternoon. Jeff and I held the dogs and cats back from inspecting Henry. Bits, our kitten, was particularly interested in Henry and tried to bop him on the head. I think that she thought he was a new toy. We stopped her before she could touch him.
Henry gets three medications: Reglan (4 times per day), Ranitidine (2 times per day), and Poly-Vi-Sol (once a day). I came across some information on the internet that claims that in some cases, Reglan has had long-term neurological side effects. I called Dr. Moussa to ask about this. Got a call from a nurse, who seemed pretty clueless (about Henry and about Reglan side effects). Eventually, she came to the conclusion that I needed to talk with Dr. Moussa, who called me in the evening. She wasn't convinced that the Reglan side effects are anything but short-term. She said that she tried taking one of her preemies off it, and he ended up spitting up a whole bunch, so she put him back on it.
My parents watched Henry for a few hours on Tuesday evening, so that Jeff and I could get dinner at a nearby restaurant and stop by the grocery store.
On Wednesday morning, Henry had a eye doctor's appointment at 1PM with Dr. Banuelos who saw Henry in the NICU in July. The staff at the eye doctor's place were quite good. One nurse seem particularly informed. As it turned out, she (Sonia) had an infant born Henry's size less than two year ago (also was in the NICU at UMC for 100 days). Sonia let us stay in one of the back offices while Henry's eyes were being dilated rather than sending us back to the waiting room. She was very sensitive about the fact that Henry shouldn't be around a room of people. Dr. Banuelos does a lot of infant eye screenings around the city. She remembered me and Henry. She hadn't met Jeff before, but she remembered meeting Grandpa. I held Henry while she inspected his eyes. Jeff decided that it was best if I held him. The eye inspection wasn't exactly pleasant because she had to pry open Henry's eyes with a Clockwork Orange device. But the inspection itself was rather quick. She said that Henry's eyes looked "fantastic" and "fabulous." It appears that the laser surgery did the trick. He is, of course, at risk for some other eye problems and will most likely need glasses. But for now, things are fine. We'll be seeing her again in 3 months.
Jeff called Dr. Moussa's office at 4PM. At our appointment on Monday, Dr. Moussa said that we should call her Wednesday afternoon. When I talked with her Tuesday, she said that she'd talk with us the next day. Well, Jeff called the office. They wanted to know the reason for the call. He said that Henry has had bloody stools, and we needed to follow-up with Dr. Moussa about his formula supplementation. When we bottle feed Henry, we fortify the breast milk with Enfacare (1/4 tsp formula to 45 mls breast milk). Dr. Wispe and other neonatalogists said that this was necessary for Henry because of his metabolic bone disease (bones weak because calcium is usually infused into the bones during the last trimester). The formula is a cow's milk based supplementation. When Dr. Moussa said to eliminate dairy, that included the supplementation. She was going to investigate other options and get back to us. A doctor from Catalina Pediatrics called back, concerned about the bloody stools. Jeff explain the situation. The person said that Dr. Moussa wasn't in this afternoon and wouldn't be in on Thursday either. We are perplexed over why she said to call Wednesday afternoon if she wasn't going to be there. We hoped that she'd call in the evening (as she did the night before), but no luck. Hopefully, she'll call tomorrow. Otherwise, we'll have to pursue other options. After the mess at Generations Healthcare with my OB, I don't want to take any chances.
Tuesday, August 21, 2007
Doctors' Appointments, Bloody Stools, and Swollen Surgical Area
On Monday, Grandpa Kenski came over in the morning to hold Henry for a while. Then, we had a doctor's appointment with Dr. Moussa. Henry was sleepy during the car ride, which was about 40 minutes long. Our appointment was at 11:15AM. I tried to get the appointment moved to first thing in the morning because Henry is too fragile to be around a waiting room of sick kids. They said that we could use the side doors because early morning was booked. We got there at 11:15AM. Jeff ran into the office to ask where the side door was. It took them 25 minutes to let us know that Henry could come in through the side. Henry and I waited in the car during those 25 minutes. Then, we stood in a hallway near the side door for another 10-15 minutes. I wasn't exactly thrilled.
Dr. Moussa's nurse obviously was clueless about Henry's situation. She asked me if we were feeding him rice cereal yet...uh, no. Does one normally feed a 5 lb baby rice cereal? Frankly, she should have been able to tell that by looking at him. He's rather petite. And, you don't calculate a preemie's age by their birthday unless you are on crack; you calculate it by what their gestational age is (due date should have been). Developmentally, that's what makes sense. That's what the literature says. Duh. Is it too much to ask that a nurse in a pediatrician's office know these things? The woman handed us a sheet before she got the doctor; it had Henry down as below the third percentile in weight, height, and head circumference. The sheet said that the baby should be looking around and smiling in reaction to environmental cues. Henry does look around quite a bit, but his coordination is still off. We noticed that the sheet was for four months old. Again, you should base a preemie's behavior off of gestational age, not birth date, meaning that she should have given us a sheet based on newborn behavior because in terms of gestational, that's what Henry is, a newborn. He would be 10 days old. So far. Not impressed.
Some good news. Henry was weighed at 5 lbs 3 ozs. He really packed on the weight this weekend. He has been eating, eating, eating.
Dr. Moussa came in. She was concerned about his groin area from the hernia surgery. The concern was that perhaps that intestines had popped out again. A possible situation because his tissue holding in the intestines is like tissue paper. The area has looked swollen. While inspecting him, Henry managed to pee on her. He also had a little bit of stool. She asked us if he had had blood in his stool before. We said no, not to our knowledge. I didn't inspect it thoroughly, but from where I was standing, it just looked brown, nothing unique.
Dr. Moussa stepped out for a few minutes. When she came back, she said that she had arranged for us to see Dr. Cosentino at 1:30PM, so that the surgery area could be inspected. She also said that she had the stool tested. There was blood in it. Could be a dietary allergy. Dairy is the prime suspect. So, I am to eliminate dairy from my diet and see if that helps. Henry's supplement is dairy-based, so we are stopping that for now, which is problematic because he needs the extra calcium. I am rather angry over the blood in stool situation. I had asked about allergies several times in the NICU. My concerns were blown off. When asking about stools, "Oh, that looks normal" was the response. The stool that I saw today looked like stools I'd seen in the NICU. To my knowledge, his stools were not tested for blood. I wonder if a good deal of his feeding intolerances could have been reactions to the milk that I had been drinking.
We visited Dr. Cosentino. The surgical area is swollen, but that's normal. Doesn't look like the hernias have popped back out. Disaster avoided for now. We are to see her again on the 10th of September.
My mom came by in the afternoon to look after Henry while Jeff took a nap and I prepared my lecture for the night. I started teaching tonight. It is a three hour class. Normally, teachers pass out the syllabus on the first day and let everyone go. But considering that one night class equals three day classes, I lectured for a while. I think that the class will be OK. It is a required course that most students hate, but I've gotten high teaching evaluations for it before. There's a long waiting list. Heard a student complaining in the hallway. My policy is that I drop students who don't show up on the first day because we have a very long list of students who want to get in. It is a class that a high percentage of students fail (regardless of who is teaching it; the material is challenging for undergrads). The student was mad that I said if she didn't come to class, I'd give her slot to someone who was attending. The bottom line is that I'm trying to weed the slacker students out (the ones who don't show up until after Labor Day in the fall or after MLK Day in the spring...extending their vacations by two weeks). These student don't do that well anyway. Dropping them saves me the trouble of having to fail them when (surprise, surprise) they don't perform because they aren't really serious about their education.
Being back kind of made me sad. It reminded me of just a few months ago when my biggest concern was preparing my next lecture. Those days seem so blissfully easy in retrospect.
I remember a sunset that Jeff and I watched a day or two before Henry was born. We stood out in the backyard with our dogs. Everything was perfect. The future looked perfect. I miss that feeling.
Dr. Moussa's nurse obviously was clueless about Henry's situation. She asked me if we were feeding him rice cereal yet...uh, no. Does one normally feed a 5 lb baby rice cereal? Frankly, she should have been able to tell that by looking at him. He's rather petite. And, you don't calculate a preemie's age by their birthday unless you are on crack; you calculate it by what their gestational age is (due date should have been). Developmentally, that's what makes sense. That's what the literature says. Duh. Is it too much to ask that a nurse in a pediatrician's office know these things? The woman handed us a sheet before she got the doctor; it had Henry down as below the third percentile in weight, height, and head circumference. The sheet said that the baby should be looking around and smiling in reaction to environmental cues. Henry does look around quite a bit, but his coordination is still off. We noticed that the sheet was for four months old. Again, you should base a preemie's behavior off of gestational age, not birth date, meaning that she should have given us a sheet based on newborn behavior because in terms of gestational, that's what Henry is, a newborn. He would be 10 days old. So far. Not impressed.
Some good news. Henry was weighed at 5 lbs 3 ozs. He really packed on the weight this weekend. He has been eating, eating, eating.
Dr. Moussa came in. She was concerned about his groin area from the hernia surgery. The concern was that perhaps that intestines had popped out again. A possible situation because his tissue holding in the intestines is like tissue paper. The area has looked swollen. While inspecting him, Henry managed to pee on her. He also had a little bit of stool. She asked us if he had had blood in his stool before. We said no, not to our knowledge. I didn't inspect it thoroughly, but from where I was standing, it just looked brown, nothing unique.
Dr. Moussa stepped out for a few minutes. When she came back, she said that she had arranged for us to see Dr. Cosentino at 1:30PM, so that the surgery area could be inspected. She also said that she had the stool tested. There was blood in it. Could be a dietary allergy. Dairy is the prime suspect. So, I am to eliminate dairy from my diet and see if that helps. Henry's supplement is dairy-based, so we are stopping that for now, which is problematic because he needs the extra calcium. I am rather angry over the blood in stool situation. I had asked about allergies several times in the NICU. My concerns were blown off. When asking about stools, "Oh, that looks normal" was the response. The stool that I saw today looked like stools I'd seen in the NICU. To my knowledge, his stools were not tested for blood. I wonder if a good deal of his feeding intolerances could have been reactions to the milk that I had been drinking.
We visited Dr. Cosentino. The surgical area is swollen, but that's normal. Doesn't look like the hernias have popped back out. Disaster avoided for now. We are to see her again on the 10th of September.
My mom came by in the afternoon to look after Henry while Jeff took a nap and I prepared my lecture for the night. I started teaching tonight. It is a three hour class. Normally, teachers pass out the syllabus on the first day and let everyone go. But considering that one night class equals three day classes, I lectured for a while. I think that the class will be OK. It is a required course that most students hate, but I've gotten high teaching evaluations for it before. There's a long waiting list. Heard a student complaining in the hallway. My policy is that I drop students who don't show up on the first day because we have a very long list of students who want to get in. It is a class that a high percentage of students fail (regardless of who is teaching it; the material is challenging for undergrads). The student was mad that I said if she didn't come to class, I'd give her slot to someone who was attending. The bottom line is that I'm trying to weed the slacker students out (the ones who don't show up until after Labor Day in the fall or after MLK Day in the spring...extending their vacations by two weeks). These student don't do that well anyway. Dropping them saves me the trouble of having to fail them when (surprise, surprise) they don't perform because they aren't really serious about their education.
Being back kind of made me sad. It reminded me of just a few months ago when my biggest concern was preparing my next lecture. Those days seem so blissfully easy in retrospect.
I remember a sunset that Jeff and I watched a day or two before Henry was born. We stood out in the backyard with our dogs. Everything was perfect. The future looked perfect. I miss that feeling.
Sunday, August 19, 2007
Henry's First Days at Home
Henry has made the transition from the NICU to home quite well. He is sleeping soundly and eating a lot.
I was surprised at how well Henry took the car ride from the hospital to home on Thursday. He wasn't fussy during our travel. The cats were very interested in Henry's arrival. I don't think Princess is thrilled at having Henry around (she's not a fan of kittens either). But Jackson continues to play the "papa" role. When Henry starts yelling, Jackson commiserates with him by yowling. Bits loves it when Jeff holds Henry because he's stationary, meaning that she knows she'll get a good chunk of lap time in.
Jeff brought Henry's swing into the living room. Because of Henry's GERD (gastroesophageal reflux disorder), Henry has to sleep in a Danny sling that props him up at a 45 degree angle. The swing is nice because it props him up as well.
Thursday was a bit exhausting for Jeff and me, but Henry had a very good day. My dad brought us dinner and held Henry.
On Friday, we had our first visit from Henry's home nurse, Michael, who will be coming to check up on Henry every Monday and Friday (except this Monday, because we have an appointment with Henry's pediatrician that day). Michael will be visiting us for the next month. So far, Henry looks good and is doing developmentally appropriate things. On Friday, he weighed 4 lbs 13 1/2 oz. Strange not having Henry measured in grams. In the afternoon, we had an oxygen delivery, which should get us through the week. My dad came over again with dinner and held Henry for a while.
On Saturday, Grandpa Kenski came by at noon to hold Henry over an hour. Henry's steri-strips from his surgery fell off. Jeff went to Babies R Us for various supplies. He tried to get a baby scale, but they were out! We miss having Henry weighed each night. On Saturday night, Bits found a baby scorpion on the floor. I wasn't too happy about having a scorpion in the living room. Despite my vegetarian beliefs, I eliminated it. I usually have Jeff do the dirty work, but he was holding Henry. I was happy that Bits alerted us to it.
On Sunday, Henry spent a good deal of the day sleeping. His appetite was high. He ate every two hours or so. Marley took an interest in Henry today and sniffed his head. I think that she actually licked it too. I wasn't thrilled about that, because of my heightened neuroses regarding germs. We ended up giving Henry a sponge bath and washed his hair (not because of Marley, but because he'd been spitting up quite a bit during the day and hadn't been washed fully in a few days). My mom returned from Washington state, where she was visiting my sister Carolyn who had orientation for vet school this past week. My mom and dad brought dinner over this evening, which was nice. Both took turns holding Henry.
Jeff and I very much want to show Henry off to our friends. But, unfortunately, the NICU staff made it clear that Henry needs to be isolated from people (other than immediate family) for the next few months. He's allowed to go outside, but not in areas where there are a lot of people (e.g., we are staying away from the mall, stores, etc.). They said that he shouldn't be exposed to too many germs from others (for now). For family, we have to make sure that everyone washes their hands before they touch him. We aren't washing our hands quite as frequently in the NICU, but per nurses' recommendation, we do have hand sanitizing lotions around the house. We are making sure to sanitize our hands after we pet the dogs and cats before touching Henry. I'm a little nervous about the pediatrician's office tomorrow. We are actually going to entry through the side door, so that we won't have to sit in the waiting room with sick children.
Henry has been put on a priority list for synergis, a shot that is given once a month during RSV season (approximately October through March). Apparently, synergis is very expensive ($1,600 per shot), so you have to fall into an extremely high risk group to get it. RSV gives adults a cold, but it can be deadly to preemies (especially those with chronic lung disease, like Henry).
Our schedule for the week includes tomorrow's appointment with Dr. Moussa. On Tuesday, we have Henry's follow-up eye exam.
That's all for now. Henry's about to stir, so I need to help Jeff.
I was surprised at how well Henry took the car ride from the hospital to home on Thursday. He wasn't fussy during our travel. The cats were very interested in Henry's arrival. I don't think Princess is thrilled at having Henry around (she's not a fan of kittens either). But Jackson continues to play the "papa" role. When Henry starts yelling, Jackson commiserates with him by yowling. Bits loves it when Jeff holds Henry because he's stationary, meaning that she knows she'll get a good chunk of lap time in.
Jeff brought Henry's swing into the living room. Because of Henry's GERD (gastroesophageal reflux disorder), Henry has to sleep in a Danny sling that props him up at a 45 degree angle. The swing is nice because it props him up as well.Thursday was a bit exhausting for Jeff and me, but Henry had a very good day. My dad brought us dinner and held Henry.
On Friday, we had our first visit from Henry's home nurse, Michael, who will be coming to check up on Henry every Monday and Friday (except this Monday, because we have an appointment with Henry's pediatrician that day). Michael will be visiting us for the next month. So far, Henry looks good and is doing developmentally appropriate things. On Friday, he weighed 4 lbs 13 1/2 oz. Strange not having Henry measured in grams. In the afternoon, we had an oxygen delivery, which should get us through the week. My dad came over again with dinner and held Henry for a while.
On Saturday, Grandpa Kenski came by at noon to hold Henry over an hour. Henry's steri-strips from his surgery fell off. Jeff went to Babies R Us for various supplies. He tried to get a baby scale, but they were out! We miss having Henry weighed each night. On Saturday night, Bits found a baby scorpion on the floor. I wasn't too happy about having a scorpion in the living room. Despite my vegetarian beliefs, I eliminated it. I usually have Jeff do the dirty work, but he was holding Henry. I was happy that Bits alerted us to it.
On Sunday, Henry spent a good deal of the day sleeping. His appetite was high. He ate every two hours or so. Marley took an interest in Henry today and sniffed his head. I think that she actually licked it too. I wasn't thrilled about that, because of my heightened neuroses regarding germs. We ended up giving Henry a sponge bath and washed his hair (not because of Marley, but because he'd been spitting up quite a bit during the day and hadn't been washed fully in a few days). My mom returned from Washington state, where she was visiting my sister Carolyn who had orientation for vet school this past week. My mom and dad brought dinner over this evening, which was nice. Both took turns holding Henry.Jeff and I very much want to show Henry off to our friends. But, unfortunately, the NICU staff made it clear that Henry needs to be isolated from people (other than immediate family) for the next few months. He's allowed to go outside, but not in areas where there are a lot of people (e.g., we are staying away from the mall, stores, etc.). They said that he shouldn't be exposed to too many germs from others (for now). For family, we have to make sure that everyone washes their hands before they touch him. We aren't washing our hands quite as frequently in the NICU, but per nurses' recommendation, we do have hand sanitizing lotions around the house. We are making sure to sanitize our hands after we pet the dogs and cats before touching Henry. I'm a little nervous about the pediatrician's office tomorrow. We are actually going to entry through the side door, so that we won't have to sit in the waiting room with sick children.
Henry has been put on a priority list for synergis, a shot that is given once a month during RSV season (approximately October through March). Apparently, synergis is very expensive ($1,600 per shot), so you have to fall into an extremely high risk group to get it. RSV gives adults a cold, but it can be deadly to preemies (especially those with chronic lung disease, like Henry).
Our schedule for the week includes tomorrow's appointment with Dr. Moussa. On Tuesday, we have Henry's follow-up eye exam.
That's all for now. Henry's about to stir, so I need to help Jeff.
Saturday, August 18, 2007
Leaving Our NICU Home
Henry spent 109 days in the NICU. On our last day there (Thursday), I took some pictures of it. Jeff and I ended up with two cars at the hospital on Thursday morning, because we had arrived at different times on Wednesday. We spent Wednesday "rooming-in" to make sure that we were comfortable with the home monitors. I ended up going back home on Thursday morning at 6AM to walk the dogs. My parents picked me up on their way to the hospital at 8AM.
The NICU at UMC is on the top floor (8th floor). Kind of strange to think that Henry hadn't been off that floor until his hernia surgery on Monday, when he got to see the first floor. The NICU is on the Labor & Delivery floor. To get to it, you have to pass through security at the L&D desk. Then, the NICU has its own security desk. Once you get cleared at the NICU security desk, you go through a door into the washroom.
When my parents and I arrived at the NICU at 8:30AM, Jeff was watching Henry during his car seat trial. Parents have to show that they have a car seat before the child is released from the hospital. And, the baby has to be placed in the car seat for twice the duration of the longest drive it will take (for us, the longest drive that we'll have to do is between our place and one of the doctor's offices on the east side of town, which will take about 45 minutes).
Holly stayed long past her shift to help get the paper work processed to get Henry released from the NICU. Carol was technically Henry's day nurse, but Holly was committed to seeing us off. It took much longer than any of us had anticipated. We had to wait for doctors to end rounds, so that an official order of release could be written up. Then, one of the nurses had to make our appointments for us before we left. Henry has an appointment with his pediatrician (Dr. Moussa) on Monday. We'll also being seeing the GI specialist (Dr. Hassan) to follow-up on his reflux issues, the pulmonary specialist (Kathy, the pulmonary RN) to make sure his oxygen requirements are being met, the eye doctors to make sure that his ROP hasn't progressed post-surgery, and Dr. Cosentino for his hernia surgery follow-up.
Henry is on two reflux medications and vitamins. Luckily, I called Walgreens before leaving the NICU to order his reflux medications. As it turned out, our insurance wasn't going to cover one of them because I guess they don't consider reflux a medical necessity to treat. Frustrating. His reflux isn't just a little problem; for a preemie, it can be a huge problem. Leslie, the NICU pharmacist, ended up changing the medication to one of the meds that Schaller Anderson would cover.
The newborn picture person came up to take Henry's picture. Henry wasn't particularly cooperative. The lady taking the pictures wasn't used to coming into the NICU. She seemed really, really nervous.
We finally packed up around 2PM. We said our goodbyes to the nurses and headed out the door for Henry's new home.
The NICU at UMC is on the top floor (8th floor). Kind of strange to think that Henry hadn't been off that floor until his hernia surgery on Monday, when he got to see the first floor. The NICU is on the Labor & Delivery floor. To get to it, you have to pass through security at the L&D desk. Then, the NICU has its own security desk. Once you get cleared at the NICU security desk, you go through a door into the washroom.
When my parents and I arrived at the NICU at 8:30AM, Jeff was watching Henry during his car seat trial. Parents have to show that they have a car seat before the child is released from the hospital. And, the baby has to be placed in the car seat for twice the duration of the longest drive it will take (for us, the longest drive that we'll have to do is between our place and one of the doctor's offices on the east side of town, which will take about 45 minutes).
Holly stayed long past her shift to help get the paper work processed to get Henry released from the NICU. Carol was technically Henry's day nurse, but Holly was committed to seeing us off. It took much longer than any of us had anticipated. We had to wait for doctors to end rounds, so that an official order of release could be written up. Then, one of the nurses had to make our appointments for us before we left. Henry has an appointment with his pediatrician (Dr. Moussa) on Monday. We'll also being seeing the GI specialist (Dr. Hassan) to follow-up on his reflux issues, the pulmonary specialist (Kathy, the pulmonary RN) to make sure his oxygen requirements are being met, the eye doctors to make sure that his ROP hasn't progressed post-surgery, and Dr. Cosentino for his hernia surgery follow-up.Henry is on two reflux medications and vitamins. Luckily, I called Walgreens before leaving the NICU to order his reflux medications. As it turned out, our insurance wasn't going to cover one of them because I guess they don't consider reflux a medical necessity to treat. Frustrating. His reflux isn't just a little problem; for a preemie, it can be a huge problem. Leslie, the NICU pharmacist, ended up changing the medication to one of the meds that Schaller Anderson would cover.
The newborn picture person came up to take Henry's picture. Henry wasn't particularly cooperative. The lady taking the pictures wasn't used to coming into the NICU. She seemed really, really nervous.We finally packed up around 2PM. We said our goodbyes to the nurses and headed out the door for Henry's new home.
Friday, August 17, 2007
The Last Few Days in the NICU
Wednesday was Henry's last full day in the NICU. He had had a very fussy Tuesday. On Wednesday, I stopped by Babies R Us on the way to the NICU to find a sound machine. There is one in the NICU that plays wave sounds (very soft, very soothing). Unfortunately, it was being used on another baby Tuesday evening (hence, the nurse tried the ADD mobile on Henry). Again, not a fan of the ADD mobile (switching nursery rhymes every 15 seconds on an infant, developmentally, makes no sense whatsoever). Long story short, I couldn't find the item I was looking for, but I did find two very cool substitutes instead. One is a little box that has a rain forest scene and plays the sounds of the rain forest (with or without music). The music is actually pretty nice for a baby toy, but I like the soft chirping of the birds and rain best. The second box has lullabies and waves.
I was looking forward to our last day in the NICU. Carol was Henry's day nurse. She thought that his sutures looked fine. She was feeding Henry when I arrived. She said that she hadn't had the opportunity to feed him much before (me or my family is there during the day to do the honors).
I discovered that someone had turned up the ringer on the telephone in the hallway near the sink across from Henry's room. This ringer is LOUD. It is on the same line as the telephone as the front desk. Because no single personnel is actually stationed near the phone in the hallway, the ringer on the telephone serves no necessary purpose other than to keep sick babies awake. The ringer is set at what I would guess is around 120 decibels (babies can't get into deep sleep with noise around 55 decibels). I have seen this ringer startle my son. When we first moved to the isolation room, Karin had the ringer turned off in the hallway. No problems. Then, Tuesday, someone turned it on (who cares if sick and fragile babies can't sleep). Tuesday night, Jeff asked one of the staff members to turn it off (the staff member said that it was impossible to turn the ringer off a single phone without turning all the ringers off...um, this goes down on the list of "what an idiot" statements). I get frustrated when people make up **** because they don't want to take the time to figure things out. I ended up talking to the person at the front desk. The gal tried to give me the same crap. I said a bit sarcastically, "Wow, that's interesting. Karin turned it off three weeks ago. Am I to understand that the NICU hadn't received any phone calls during those three weeks?" At this point, she realized the flaw in her logic but didn't know how to fix the phone, so she unplugged it from the wall.
Long story short, I was really frustrated that the super loud phone was turned back on. Again, I don't understand what folks don't get about keeping unnecessary noise to a minimum because sleep is crucial to babies' health (not just my son, but all babies). I tried getting various staff members to turn it off. They said it couldn't be done (it is a telephone, not a space shuttle). I called Jeff (wasn't supposed to use my cell phone in the NICU, but I was at least 50 feet from the nearest high frequency oscillator--the ventilator that goes off if a cell phone is 3 feet near it) and told him to bring a hammer. I'd been pretty patient and civil up until this point about my frustrations. By nature, I'm fairly reserved and measured with others (I'm told that I have a good poker face), but I don't handle laziness or stupidity well (e.g, I get pretty blunt with students when they say dumb things like, "I can't believe you have us read so much. We had to read like two books before a test."). And, I'm not patient by nature (I work really hard at patience because I know it is not one of my strengths). Once I've hit my tolerance level, I can be rather abrupt in demeanor. I told Jeff to bring a hammer so that I could smash the fill-in-the blank, fill-in-the blank telephone to fill-in-the blank, fill-in-the blank pieces because the fill-in-the blank staff were being fill-in-the blanks. In the end, I tracked down Melissa Perillo (the nurse manager). I explained the problem more diplomatically than when I discussed it with Jeff. She had it turned off in a matter of minutes. It is rather absurd that it takes an administrator to get a telephone ringer turned down. At least, I didn't need to use the hammer after all.
I assume that now we've left the NICU, the telephone ringer will be turned on full blast. Maybe someone will come to their senses and try to protect the babies that remain in the NICU. The telephone is located in an area where it is also disturbing to some of the Pod Two babies. But someone else will have to take up that fight.
Because Henry came home on oxygen and an apnea monitor, we had to go through monitor and CPR training on Wednesday night with Kathy, a pulmonary nurse who we'll be seeing a lot of over the next few months. Jeff, my parents, my sister Erin, brother-in-law Brian, and I were trained on the equipment. There were two dolls, so we practiced CPR and choking in pairs. Jeff and I went first. Then, Erin and Brian went. And then, my parents took their turn. We ended the training by practicing the techniques for helping a child who is choking. As my parents practiced, the leg fell of the doll my mom was using. Then, less than a minute later, a leg fell off my dad's doll. So, they finished their trial with legless dolls. It was rather amusing and horrifying at the same time.
It was about 9PM by the time we finished with our training (a three-hour class). Jeff and I then began our rooming-in. Holly was Henry's evening nurse. She traded days with someone else. We were pleased that she was Henry's last evening nurse. She weighed Henry at 2180 grams. His head circumference was a little smaller than that reported on Sunday. His hematocrit was 30.5.
Henry got wound up during the night. Holly showed us some techniques to calm him down. Holly said that when the little ones yell like Henry did, it meant that they were stronger and no longer needed to be in the NICU. I concur that Henry was ready to come home. As for me and Jeff, well...that's another story. We were really exhausted and stayed up most of the night (Wednesday). And then we were up almost all night during his first night home. Not to mention not getting much sleeping during his surgery days and recovery days.
Henry's going to be a hard one to keep up with. Joyce warned me a few weeks ago that Henry is going to be a handful. She pointed out that he's rather energetic for an anemic baby. Anemia usually makes babies lethargic. If the past month is representative of what Henry is like lethargic, just imagine what he's going to be like when his hematocrit is normal!!!
I was looking forward to our last day in the NICU. Carol was Henry's day nurse. She thought that his sutures looked fine. She was feeding Henry when I arrived. She said that she hadn't had the opportunity to feed him much before (me or my family is there during the day to do the honors).
I discovered that someone had turned up the ringer on the telephone in the hallway near the sink across from Henry's room. This ringer is LOUD. It is on the same line as the telephone as the front desk. Because no single personnel is actually stationed near the phone in the hallway, the ringer on the telephone serves no necessary purpose other than to keep sick babies awake. The ringer is set at what I would guess is around 120 decibels (babies can't get into deep sleep with noise around 55 decibels). I have seen this ringer startle my son. When we first moved to the isolation room, Karin had the ringer turned off in the hallway. No problems. Then, Tuesday, someone turned it on (who cares if sick and fragile babies can't sleep). Tuesday night, Jeff asked one of the staff members to turn it off (the staff member said that it was impossible to turn the ringer off a single phone without turning all the ringers off...um, this goes down on the list of "what an idiot" statements). I get frustrated when people make up **** because they don't want to take the time to figure things out. I ended up talking to the person at the front desk. The gal tried to give me the same crap. I said a bit sarcastically, "Wow, that's interesting. Karin turned it off three weeks ago. Am I to understand that the NICU hadn't received any phone calls during those three weeks?" At this point, she realized the flaw in her logic but didn't know how to fix the phone, so she unplugged it from the wall.
Long story short, I was really frustrated that the super loud phone was turned back on. Again, I don't understand what folks don't get about keeping unnecessary noise to a minimum because sleep is crucial to babies' health (not just my son, but all babies). I tried getting various staff members to turn it off. They said it couldn't be done (it is a telephone, not a space shuttle). I called Jeff (wasn't supposed to use my cell phone in the NICU, but I was at least 50 feet from the nearest high frequency oscillator--the ventilator that goes off if a cell phone is 3 feet near it) and told him to bring a hammer. I'd been pretty patient and civil up until this point about my frustrations. By nature, I'm fairly reserved and measured with others (I'm told that I have a good poker face), but I don't handle laziness or stupidity well (e.g, I get pretty blunt with students when they say dumb things like, "I can't believe you have us read so much. We had to read like two books before a test."). And, I'm not patient by nature (I work really hard at patience because I know it is not one of my strengths). Once I've hit my tolerance level, I can be rather abrupt in demeanor. I told Jeff to bring a hammer so that I could smash the fill-in-the blank, fill-in-the blank telephone to fill-in-the blank, fill-in-the blank pieces because the fill-in-the blank staff were being fill-in-the blanks. In the end, I tracked down Melissa Perillo (the nurse manager). I explained the problem more diplomatically than when I discussed it with Jeff. She had it turned off in a matter of minutes. It is rather absurd that it takes an administrator to get a telephone ringer turned down. At least, I didn't need to use the hammer after all.
I assume that now we've left the NICU, the telephone ringer will be turned on full blast. Maybe someone will come to their senses and try to protect the babies that remain in the NICU. The telephone is located in an area where it is also disturbing to some of the Pod Two babies. But someone else will have to take up that fight.
Because Henry came home on oxygen and an apnea monitor, we had to go through monitor and CPR training on Wednesday night with Kathy, a pulmonary nurse who we'll be seeing a lot of over the next few months. Jeff, my parents, my sister Erin, brother-in-law Brian, and I were trained on the equipment. There were two dolls, so we practiced CPR and choking in pairs. Jeff and I went first. Then, Erin and Brian went. And then, my parents took their turn. We ended the training by practicing the techniques for helping a child who is choking. As my parents practiced, the leg fell of the doll my mom was using. Then, less than a minute later, a leg fell off my dad's doll. So, they finished their trial with legless dolls. It was rather amusing and horrifying at the same time.
It was about 9PM by the time we finished with our training (a three-hour class). Jeff and I then began our rooming-in. Holly was Henry's evening nurse. She traded days with someone else. We were pleased that she was Henry's last evening nurse. She weighed Henry at 2180 grams. His head circumference was a little smaller than that reported on Sunday. His hematocrit was 30.5.
Henry got wound up during the night. Holly showed us some techniques to calm him down. Holly said that when the little ones yell like Henry did, it meant that they were stronger and no longer needed to be in the NICU. I concur that Henry was ready to come home. As for me and Jeff, well...that's another story. We were really exhausted and stayed up most of the night (Wednesday). And then we were up almost all night during his first night home. Not to mention not getting much sleeping during his surgery days and recovery days.
Henry's going to be a hard one to keep up with. Joyce warned me a few weeks ago that Henry is going to be a handful. She pointed out that he's rather energetic for an anemic baby. Anemia usually makes babies lethargic. If the past month is representative of what Henry is like lethargic, just imagine what he's going to be like when his hematocrit is normal!!!
Henry's Home!
We just wanted to give everyone the update that Henry came home yesterday. We've had a very busy few days. We'll be posting pictures of his last days in the NICU soon.We had a rather stressful night yesterday, trying to figure out what our Henry routine (as far as he lets us have a routine) is going to be. Jeff is on vacation from work (starting yesterday through next week). I start teaching on Monday. It's a three hour Monday night methods/stats course for undergrads. I've taught it before (just not as a three hour course).
Bitsy, our kitten, has adapted to Henry well. She settled on Jeff's lap as he held Henry last night. Our dogs are a little concern about the change of events. They were removed from our bedroom area, starting a few weeks ago, so they are feeling a little neglected. I accidentally left the dog gate open yesterday. Roger (our lab) wandered back into the bedroom where Henry's crib is. Henry was crying up a storm, and Jackson (our very sensitive male cat) got territorial and hissed at Roger. We think that Jackson might have been playing up the paternal, protector role; he did that once when we brought kittens home for a couple months when they had been abandoned on a golf course in Philly. For some reason, Jackson really plays up the papa role sometimes and takes it upon himself to protect the young. Jackson was very sad when we had to find a home (Jenny and Jon Stromer-Galley) for the two kittens (a necessity at the time because we already had three cats in a 1-bdrm condo, and 2 additions was pushing the limits). Jackson has been very curious about Henry, and checks him out when he fusses.
My dad brought dinner to us last night and tonight. He's currently feeding Mr. Henry. Jeff thinks that Henry missed Grandpa. Grandpa didn't get a chance to feed him yesterday. As I write this blog entry, Jeff has reported that Henry has just polished off a 50 ml bottle and looks content in Grandpa's arms.Other than that, the big thing is that Henry is sleeping well. His sleep looks much more peaceful than it ever did in the NICU. Some R&R will do him much good. We have a no TV around Henry policy right now. We don't want to overstimulate him. The new sounds (or lack of sounds) of our household is enough stimulation for now.
Wednesday, August 15, 2007
No Sleep
On Monday night, Jeff took the evening shift at the hospital. Sue was Henry's evening nurse. Henry had woken up, but wasn't feeding well. It took Jeff hours to get a minimal amount of milk down Henry. This was important because if Henry hadn't been taking it, the medical staff would have had to reinsert an IV for fluids. I called Jeff at 3:45AM to see if he wanted me to come down and relieve him. But in the end, Jeff came home as Henry was sleeping by this point. After Jeff left, Sue weighed Henry at 2155 grams--a 50 gram loss.
Angela and Melanie were Henry's day nurses on Tuesday. Melanie recently graduated and was being trained by Angela. They said the sutures looked good.
At 1PM, the home medical equipment people arrived right as I was about to feed Henry who was very hungry. Angela turned on the bright overhead lights, which Henry hates. The equipment folks needed some light. They showed me the equipment (oxygen tank and apnea/brady monitor) while Melanie tried to feed Henry. Henry took 45 mls, but Melanie described it as a poor feeding. Henry was overstimulated.
The apnea/brady monitor is set to go off if Henry's heart rate dips below 70 or if he doesn't breath for 20 seconds. The oxygen should be easy enough to figure out.
After the equipment people left, Henry wouldn't settle down. His pulsocs alarm kept going off (it wasn't reading correctly). Angela tried changing the pulsocs cords, but nothing would get it to work. So, she ended up turning it off and said to let them know if he turned blue. I eventually tried to breast feed him (did about 25 minutes over an hour). He still wouldn't settle down. Tried changing his diaper. He threw up while I was changing him. Then, he let out a foot long geiser of urine, which got everything wet. And, I couldn't find his nurses to help me change out his blankets. Plus, the pulsocs was still off and he was looking really mottled. Luckily, Karin came along to help me, and she got the pulsocs unit to work.
My mom came to relieve me in the late afternoon. She had a hard time settling him down too.
Sue was back on the evening shift. Henry weighed 2160 grams...not exactly a great weight gain.
Jeff finished giving Henry the bottle he had started with Sue. Henry slept about a 1/2 hour. By this time, it was about 9PM. Henry wouldn't settle down. He looked overstimulated. He was fussy, sounded at times like he was hurting. We tried changing his diaper and putting him to bed. Nothing worked. Tried nursing him for a while (about 35 minutes over an hour). He kept rooting but pushing food away. Lots of throw up. Tried another two rounds of bottle feeding. Sue put him back in bed around 1AM. He still wouldn't settle down. She got him a mobile (unfortunately, it was the one I hate with a passion...designed to create ADD in kids by playing different nursery rhymes for 15 seconds then switching). That didn't work. He let out some screeches. Sue talked to the nurse practitioner who just said to wrap him in warm blankets and talk to her later (great...excellent...don't even bother to check the screeching kid out).
He finally slept for a while around 3AM. We left around 4AM, but it looked like he was going to stir again.
All in all, a pretty miserable night.
Angela and Melanie were Henry's day nurses on Tuesday. Melanie recently graduated and was being trained by Angela. They said the sutures looked good.
At 1PM, the home medical equipment people arrived right as I was about to feed Henry who was very hungry. Angela turned on the bright overhead lights, which Henry hates. The equipment folks needed some light. They showed me the equipment (oxygen tank and apnea/brady monitor) while Melanie tried to feed Henry. Henry took 45 mls, but Melanie described it as a poor feeding. Henry was overstimulated.
The apnea/brady monitor is set to go off if Henry's heart rate dips below 70 or if he doesn't breath for 20 seconds. The oxygen should be easy enough to figure out.
After the equipment people left, Henry wouldn't settle down. His pulsocs alarm kept going off (it wasn't reading correctly). Angela tried changing the pulsocs cords, but nothing would get it to work. So, she ended up turning it off and said to let them know if he turned blue. I eventually tried to breast feed him (did about 25 minutes over an hour). He still wouldn't settle down. Tried changing his diaper. He threw up while I was changing him. Then, he let out a foot long geiser of urine, which got everything wet. And, I couldn't find his nurses to help me change out his blankets. Plus, the pulsocs was still off and he was looking really mottled. Luckily, Karin came along to help me, and she got the pulsocs unit to work.
My mom came to relieve me in the late afternoon. She had a hard time settling him down too.
Sue was back on the evening shift. Henry weighed 2160 grams...not exactly a great weight gain.
Jeff finished giving Henry the bottle he had started with Sue. Henry slept about a 1/2 hour. By this time, it was about 9PM. Henry wouldn't settle down. He looked overstimulated. He was fussy, sounded at times like he was hurting. We tried changing his diaper and putting him to bed. Nothing worked. Tried nursing him for a while (about 35 minutes over an hour). He kept rooting but pushing food away. Lots of throw up. Tried another two rounds of bottle feeding. Sue put him back in bed around 1AM. He still wouldn't settle down. She got him a mobile (unfortunately, it was the one I hate with a passion...designed to create ADD in kids by playing different nursery rhymes for 15 seconds then switching). That didn't work. He let out some screeches. Sue talked to the nurse practitioner who just said to wrap him in warm blankets and talk to her later (great...excellent...don't even bother to check the screeching kid out).
He finally slept for a while around 3AM. We left around 4AM, but it looked like he was going to stir again.
All in all, a pretty miserable night.
Monday, August 13, 2007
Bilateral Hernia Surgery Completed
Henry had his hernia surgery today. We started off the day with Janice as his day nurse. At 6AM, he was only allowed to have pedialyte. Of course, Henry was hungry when Janice came on duty, and there was no pedialyte in the NICU. Janice eventually was able to get some around 8:30AM, which calmed him down a little.
I arrived around 9:30AM. My dad was in Henry's room, talking to Joyce, who came into the NICU at 8:30AM (during her vacation) to make sure that Henry (and me) was alright. I have to say (again) that Joyce and Holly are amazing nurses. I am so touched that they care about Henry so much to come into work during their vacations. My dad went to work after I got there. The surgery was scheduled for noon.
Holly came some time between 10-11AM. Jeff had work to do in the morning but managed to get there around 11:15AM. Around 11:30AM, someone from downstairs arrived to take our baby to the operating room. Holly said a prayer with me and Jeff before we headed down there.
Once downstairs, we spent about 45-60 minutes in a prep room. Jeff and I met the surgeon for the first time, a doctor named Catherine Cosentino. We didn't talk with Dr. Cosentino long. But she put me at ease almost immediately. She carried herself in a self-assured manner (not cocky but confident). There are a few people in this world who possess a natural leadership style. They don't have to list out their accomplishments or drop names to gain respect from others. Competence and command emanate from their behaviors seamlessly. My mentor in graduate school (KHJ) is such a person. And, Dr. Cosentino exhibited these traits as well. She explained what would happen in the OR. She checked out Henry's hernias while we watched. Unfortunately, he had one on both sides (bilateral). She explained the risks of the surgery but said matter of factly that they wouldn't happen under her hand. She wasn't braggadocios as she said it. She just stated it as fact. Unfortunately, just because he has had this surgery doesn't preclude the hernias from breaking through again, since the tissue on preemies is very delicate. But we'll hope for now that no holes appear and that Henry can enjoy some semblance of digestive normality once the surgery has been completed.
After talking with Dr. Cosentino, we talked with the anesthesiologist, Dr. Loeb (I think). Holly came down to the prep room with us. Between her and Janice, they covered Henry's prior history for Dr. Loeb.
Henry got wheeled away around 12:20PM. My mom (who arrived while we were in prep), Holly, Jeff and I then went to the cafeteria for lunch. The cafeteria today seemed particularly unappetizing. As far as cafeterias go, it isn't bad given how inexpensive the food is. But as a vegetarian, there are only a couple things I can eat. And having been at the hospital 106 days, I couldn't stomach those options. So I had a chai javalanche and a brownie (not exactly nutritious). We got back us to the NICU around 1PM. The doctors called from downstairs to say that the first part of the procedure had gone well. We sat around Henry's room for a while. Joyce joined us. She didn't go downstairs as she didn't want too many cooks in the kitchen. I was pleased that she was there when Henry came back upstairs.
Henry emerged with an entourage of doctors around 1:30PM. Dr. Cosentio reported that everything had gone well. We are to have a follow-up with her in two weeks. Henry was still ventilated when he came back upstairs. They had him on a slightly different ventilator than the ones he had had during his first two weeks in the NICU. This one was a Galileo ventilator. I gather that the NICU nurses weren't exactly impressed with the intubation that they had done in the OR. They had put the ventilator tube down Henry and taped it down over the cannula tube, rather than removing the cannula, which at least two NICU nurses independently described as "lazy."
Rather than putting Henry back in the isolation room, Dr. Erenberg had Henry placed in Pod Three, slot 22, which as you look at the room toward the windows is the slot second from the back on the right hand side. Pod Three just has a few babies at the moment, so Henry didn't have podmates near him. My mom counted eleven people in Henry's entourage. My mom, Jeff, and I hung back as the entourage got Henry settled.
Once Henry began to stir, Janice took a blood gas. The results looked quite good. Jeff headed home once Henry was settled in. We decided to try to split sleeping shifts. Jeff came home to take a nap. He's at the NICU now. I'm home, obviously writing this blog entry, and plan to take a nap and then relieve Jeff in a few hours.
A little while after Jeff left, once Henry showed signs of really wanting to wake up, the doctors and nurses decided that he was ready to be extubated (off ventilator, tube removed from throat). By this time (around 3PM), Janice was going off duty and nurse Henry was taking over Henry's case. The Galileo ventilator was different from the Servo that Henry had been on before, in that it had a computer screen that allowed the machine to be set in a CPAP (continuous positive airway pressure) mode. This version of CPAP was a little different than the CPAP that Henry had been on for 29 days in that it was run out of the tube down his throat, rather than through his nasal passages. The CPAP provides pressure for the baby to breath but the baby has to do the work taking the breath in. By running through the mouth, it creates a situation that Melita said is kind of like breathing through a cocktail straw. Henry's test for being ready to be extubated was that he had to keep his sats elevated for 10 minutes while on CPAP mode. Not only did he managed to keep his sats elevated, but his oxygen saturation levels actually increased to 99%. Nurse Henry counted down the minutes. And then switched Henry over to cannula. The cannula tube got kind of messy with the tape that had been placed over it. Therefore, nurse Henry showed me how to get rid of all the old tape and put down fresh duoderm and tape to hold the cannula in place. While replacing the tape, the cannula was off Henry's face for several minutes. I kept an eye on his sats, and they stayed around 100%. I think that he'll be ready for being off oxygen soon. He just needs to get a little bigger (more lung tissue) and to raise his hematocrit up a little bit (it was 30 on Sunday).
Nadine called into the NICU to check up on Henry. Aren't these nurses sweet? Holly took the call and gave Nadine the update. Henry's primaries rock!
Holly headed home around 5PM, having once again going beyond the call of duty (she is after all on vacation and not getting paid for her visit, although she helped out with a lot of things). Henry was very awake and hungry by this time. Nurse Henry got me a bottle of 45 mls to feed my son. Henry took 15 mls, but then didn't seem to want anymore. Nurse Henry said that I was being too gentle with him and showed me how to get him to eat more. He kept Henry alert by twisting the bottle a quarter turn every time Henry tried to drift off to sleep. My son ended up eating 45 mls. Nurse Henry had to go to Pod Two to attend to another baby. My son was still rooting. I tried giving him the pacifier. But after sucking on it vigorously for 10 minutes, I decided that he needed more. So Kathy Lucas got me another 20 mls, of which Henry drank 10 mls. Not bad for a post surgery feast. Nurse Henry removed Henry's IV once it became clear that Henry was eating.
Henry's sutures are quite small. Two little lines held together by steri-strips right above the groin about an inch below the belly button. The biggest obstacle for recovery is probably getting the anesthesia out of Henry's system. My mom overheard one of the doctors say that Henry's vitals were rock solid during the entire surgery. They are prescribing Tylenol for his pain. And, since he had several apnea spells after his eye "treatment," they decided to give Henry one shot of caffeine.
While I was feeding Henry, Aunt Erin stopped by to check on him. Erin, my mom, and I chatted for awhile. Around 6:45PM, we got kicked out for shift change.
It was an eventful day. Things are looking fine. And, hopefully, on Thursday, we will be able to bring Henry home.
I arrived around 9:30AM. My dad was in Henry's room, talking to Joyce, who came into the NICU at 8:30AM (during her vacation) to make sure that Henry (and me) was alright. I have to say (again) that Joyce and Holly are amazing nurses. I am so touched that they care about Henry so much to come into work during their vacations. My dad went to work after I got there. The surgery was scheduled for noon.
Holly came some time between 10-11AM. Jeff had work to do in the morning but managed to get there around 11:15AM. Around 11:30AM, someone from downstairs arrived to take our baby to the operating room. Holly said a prayer with me and Jeff before we headed down there.
Once downstairs, we spent about 45-60 minutes in a prep room. Jeff and I met the surgeon for the first time, a doctor named Catherine Cosentino. We didn't talk with Dr. Cosentino long. But she put me at ease almost immediately. She carried herself in a self-assured manner (not cocky but confident). There are a few people in this world who possess a natural leadership style. They don't have to list out their accomplishments or drop names to gain respect from others. Competence and command emanate from their behaviors seamlessly. My mentor in graduate school (KHJ) is such a person. And, Dr. Cosentino exhibited these traits as well. She explained what would happen in the OR. She checked out Henry's hernias while we watched. Unfortunately, he had one on both sides (bilateral). She explained the risks of the surgery but said matter of factly that they wouldn't happen under her hand. She wasn't braggadocios as she said it. She just stated it as fact. Unfortunately, just because he has had this surgery doesn't preclude the hernias from breaking through again, since the tissue on preemies is very delicate. But we'll hope for now that no holes appear and that Henry can enjoy some semblance of digestive normality once the surgery has been completed.
After talking with Dr. Cosentino, we talked with the anesthesiologist, Dr. Loeb (I think). Holly came down to the prep room with us. Between her and Janice, they covered Henry's prior history for Dr. Loeb.Henry got wheeled away around 12:20PM. My mom (who arrived while we were in prep), Holly, Jeff and I then went to the cafeteria for lunch. The cafeteria today seemed particularly unappetizing. As far as cafeterias go, it isn't bad given how inexpensive the food is. But as a vegetarian, there are only a couple things I can eat. And having been at the hospital 106 days, I couldn't stomach those options. So I had a chai javalanche and a brownie (not exactly nutritious). We got back us to the NICU around 1PM. The doctors called from downstairs to say that the first part of the procedure had gone well. We sat around Henry's room for a while. Joyce joined us. She didn't go downstairs as she didn't want too many cooks in the kitchen. I was pleased that she was there when Henry came back upstairs.
Henry emerged with an entourage of doctors around 1:30PM. Dr. Cosentio reported that everything had gone well. We are to have a follow-up with her in two weeks. Henry was still ventilated when he came back upstairs. They had him on a slightly different ventilator than the ones he had had during his first two weeks in the NICU. This one was a Galileo ventilator. I gather that the NICU nurses weren't exactly impressed with the intubation that they had done in the OR. They had put the ventilator tube down Henry and taped it down over the cannula tube, rather than removing the cannula, which at least two NICU nurses independently described as "lazy."
Rather than putting Henry back in the isolation room, Dr. Erenberg had Henry placed in Pod Three, slot 22, which as you look at the room toward the windows is the slot second from the back on the right hand side. Pod Three just has a few babies at the moment, so Henry didn't have podmates near him. My mom counted eleven people in Henry's entourage. My mom, Jeff, and I hung back as the entourage got Henry settled.
Once Henry began to stir, Janice took a blood gas. The results looked quite good. Jeff headed home once Henry was settled in. We decided to try to split sleeping shifts. Jeff came home to take a nap. He's at the NICU now. I'm home, obviously writing this blog entry, and plan to take a nap and then relieve Jeff in a few hours.
A little while after Jeff left, once Henry showed signs of really wanting to wake up, the doctors and nurses decided that he was ready to be extubated (off ventilator, tube removed from throat). By this time (around 3PM), Janice was going off duty and nurse Henry was taking over Henry's case. The Galileo ventilator was different from the Servo that Henry had been on before, in that it had a computer screen that allowed the machine to be set in a CPAP (continuous positive airway pressure) mode. This version of CPAP was a little different than the CPAP that Henry had been on for 29 days in that it was run out of the tube down his throat, rather than through his nasal passages. The CPAP provides pressure for the baby to breath but the baby has to do the work taking the breath in. By running through the mouth, it creates a situation that Melita said is kind of like breathing through a cocktail straw. Henry's test for being ready to be extubated was that he had to keep his sats elevated for 10 minutes while on CPAP mode. Not only did he managed to keep his sats elevated, but his oxygen saturation levels actually increased to 99%. Nurse Henry counted down the minutes. And then switched Henry over to cannula. The cannula tube got kind of messy with the tape that had been placed over it. Therefore, nurse Henry showed me how to get rid of all the old tape and put down fresh duoderm and tape to hold the cannula in place. While replacing the tape, the cannula was off Henry's face for several minutes. I kept an eye on his sats, and they stayed around 100%. I think that he'll be ready for being off oxygen soon. He just needs to get a little bigger (more lung tissue) and to raise his hematocrit up a little bit (it was 30 on Sunday).
Nadine called into the NICU to check up on Henry. Aren't these nurses sweet? Holly took the call and gave Nadine the update. Henry's primaries rock!
Holly headed home around 5PM, having once again going beyond the call of duty (she is after all on vacation and not getting paid for her visit, although she helped out with a lot of things). Henry was very awake and hungry by this time. Nurse Henry got me a bottle of 45 mls to feed my son. Henry took 15 mls, but then didn't seem to want anymore. Nurse Henry said that I was being too gentle with him and showed me how to get him to eat more. He kept Henry alert by twisting the bottle a quarter turn every time Henry tried to drift off to sleep. My son ended up eating 45 mls. Nurse Henry had to go to Pod Two to attend to another baby. My son was still rooting. I tried giving him the pacifier. But after sucking on it vigorously for 10 minutes, I decided that he needed more. So Kathy Lucas got me another 20 mls, of which Henry drank 10 mls. Not bad for a post surgery feast. Nurse Henry removed Henry's IV once it became clear that Henry was eating.Henry's sutures are quite small. Two little lines held together by steri-strips right above the groin about an inch below the belly button. The biggest obstacle for recovery is probably getting the anesthesia out of Henry's system. My mom overheard one of the doctors say that Henry's vitals were rock solid during the entire surgery. They are prescribing Tylenol for his pain. And, since he had several apnea spells after his eye "treatment," they decided to give Henry one shot of caffeine.
While I was feeding Henry, Aunt Erin stopped by to check on him. Erin, my mom, and I chatted for awhile. Around 6:45PM, we got kicked out for shift change.
It was an eventful day. Things are looking fine. And, hopefully, on Thursday, we will be able to bring Henry home.
Sunday, August 12, 2007
Take My Hernia........Please
Kathy Lucas took care of Henry during the day today and Ben is his nurse tonight. Ben took care of Henry the very first night he was in the NICU. That conjures up many memories of the things he has been through and the progress he has made. Unfortunately I think I'm too tired to articulate them right now. Suffice it to say, it is amazing where he has been and what he has accomplished. He has fought on through, never giving any signs of giving up. There is still a long way to go but he has the heart to keep moving on.
Sunday night is the measuring night. Tonight he weighs 2205 grams or 4lbs 14 oz. That is what Kate weighed when she went home from the NICU some, umm, 29 years ago. His length was measured at 42 cm. That is down 1 cm from last week. Obviously length is not an exact science as this is the second time they claim he has shrunk. His head circumference is now 33 cm which is up 1 cm from last week. That is what we like to hear.
Grandpa Henry spent the morning with him from 8am to noon. I took the noon to 4pm shift. Grandma relieved me at 3:30pm and stayed until shift change at 6:45 pm. Kate is visiting him this evening.
For the most part it was an uneventful day. He was a bit fussy for everyone it seems. He had not had a bowel movement since his eye procedure on Friday and I think that was getting to him. While I was feeding him just after Grandpa left he finally made a sizable deposit. He had another one some time this evening.
I feel bad that he is just getting back to normal and tomorrow he is going to be sedated again for his hernia surgery and will have to go through this again. A couple of the nurses mentioned how it would be nice if they would double up on things like the hernia surgery and the eye procedure. It would make much more sense to only sedate him once. I would think it might even save the hospital money. But they don't do that.
The surgery, yes it is a surgery this time, is scheduled for noon tomorrow. It is kind of a welcome surgery. It just can't be comfortable to have your intestines leaking through to places they shouldn't be. It is very swollen and may well contribute to his general restless he displays so often.
Kate took the afternoon off from the hospital to stay home and get some work done. She feels terribly guilty every time she stays home (which has been maybe twice) instead of visiting him. However, I think it is very important for her to take some breaks for her sanity. I keep telling her, that is why there are two of us. Listen to Hillary, it takes a village. Best to take some time now while we have a team of highly trained professionals to be babysitter. Soon it will just be us and the grandparents.
I took this evening off. I haven't had more than a few hours sleep in a night all week. I was going to sleep Saturday and then my work had an emergency and woke me up first thing in the morning. I had to work today as well but that was planned. So I stayed home with the idea of getting to bed early but I'm still up and will be up for a while longer because there is just so much to do. I spent the bulk of the evening putting together baby things. The stroller was pretty easy as was the swing. The pack 'n play was some work. It is one of those things that you are supposed to be able to pack up and take with you. I believe you would need to be able to solve a Rubik's cube to be able to put it back in its carrier. I got two sides once before pulling the Rubik's cube apart with a screw driver and putting it back together. That's not against the rules, is it?
Tomorrow is hopefully the last surgery for the rest of his life. On Wednesday we are going to be receiving instruction on his oxygen and monitoring equipment as well as CPR. Grandma, Grandpa and uncle Brian will all be participating since they will be taking care of him. Then Kate and I will need to stay overnight in the hospital to prove we can handle the equipment. Fun.
Sunday night is the measuring night. Tonight he weighs 2205 grams or 4lbs 14 oz. That is what Kate weighed when she went home from the NICU some, umm, 29 years ago. His length was measured at 42 cm. That is down 1 cm from last week. Obviously length is not an exact science as this is the second time they claim he has shrunk. His head circumference is now 33 cm which is up 1 cm from last week. That is what we like to hear.
Grandpa Henry spent the morning with him from 8am to noon. I took the noon to 4pm shift. Grandma relieved me at 3:30pm and stayed until shift change at 6:45 pm. Kate is visiting him this evening.
For the most part it was an uneventful day. He was a bit fussy for everyone it seems. He had not had a bowel movement since his eye procedure on Friday and I think that was getting to him. While I was feeding him just after Grandpa left he finally made a sizable deposit. He had another one some time this evening.
I feel bad that he is just getting back to normal and tomorrow he is going to be sedated again for his hernia surgery and will have to go through this again. A couple of the nurses mentioned how it would be nice if they would double up on things like the hernia surgery and the eye procedure. It would make much more sense to only sedate him once. I would think it might even save the hospital money. But they don't do that.
The surgery, yes it is a surgery this time, is scheduled for noon tomorrow. It is kind of a welcome surgery. It just can't be comfortable to have your intestines leaking through to places they shouldn't be. It is very swollen and may well contribute to his general restless he displays so often.
Kate took the afternoon off from the hospital to stay home and get some work done. She feels terribly guilty every time she stays home (which has been maybe twice) instead of visiting him. However, I think it is very important for her to take some breaks for her sanity. I keep telling her, that is why there are two of us. Listen to Hillary, it takes a village. Best to take some time now while we have a team of highly trained professionals to be babysitter. Soon it will just be us and the grandparents.
I took this evening off. I haven't had more than a few hours sleep in a night all week. I was going to sleep Saturday and then my work had an emergency and woke me up first thing in the morning. I had to work today as well but that was planned. So I stayed home with the idea of getting to bed early but I'm still up and will be up for a while longer because there is just so much to do. I spent the bulk of the evening putting together baby things. The stroller was pretty easy as was the swing. The pack 'n play was some work. It is one of those things that you are supposed to be able to pack up and take with you. I believe you would need to be able to solve a Rubik's cube to be able to put it back in its carrier. I got two sides once before pulling the Rubik's cube apart with a screw driver and putting it back together. That's not against the rules, is it?
Tomorrow is hopefully the last surgery for the rest of his life. On Wednesday we are going to be receiving instruction on his oxygen and monitoring equipment as well as CPR. Grandma, Grandpa and uncle Brian will all be participating since they will be taking care of him. Then Kate and I will need to stay overnight in the hospital to prove we can handle the equipment. Fun.
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