Henry's Fountain

Lisa G. was on duty yesterday. Henry slept a good part of the day. I came around 12:45PM. My mom was holding him. He was supposed to have an eye exam, but that was rescheduled for today. I held him for a while. He wasn't that interested in nursing. I put him back into his isolette around 3PM, so that I could get some lunch. When I came back up, he was still sleepy, so I left him in his bed.

Jeff and I came back to visit him in the evening. We ran into my sister Carolyn in the washroom. Aunt Carolyn changed his diaper. Henry put on a show for her by having a brady and then, in the middle of the change, making a fountain. His diaper was 32 grams. Kathy was Henry's evening nurse. She weighed him at 1450 grams. Jeff and I were a little disappointed because although we do not expect him to gain weight everyday, we don't like to see it go backward.

After the diaper change, Aunt Carolyn held him. We were lucky that the nurses decided to ignore the no visitors after 9PM rule. The pod was quiet, and there were no other families there, so it was easy for them to ignore it, which we appreciated. After Carolyn held him, I tried to get him to nurse, but he just wanted to sleep.

I suspect that his super sleepiness yesterday was brought on by one of two things: (1) he's going through a growth spurt, or (2) his anemia is getting to him. He was supposed to have a crit and retic test today. They usually do those blood draws in the early morning. When I called, Jen was his nurse this morning and she said no blood draws had been ordered or made, which is odd. So, I'm headed down there soon to see what they've decided to do.

Sponge Bath

Joyce, Kathy, and Holly were on duty yesterday. Henry spent the morning with Grandpa and Grandma Kenski. My mom reported that Henry had slept most of the morning. Joyce thought he looked great. He was put in one of the new outfits that my mom got him.

Joyce said that Jeff and I should start getting his nursery ready and find a pediatrician. So I plan to start looking today. Unfortunately, the NICU staff can't give out recommendations.

I tried nursing him around 1PM, but he ended up sleeping in my arms. I was glad that he was able to sleep through the pod ruckus. Two of the babies were being poked and prodded, and therefore were unhappy campers, letting everyone else know about it.

Joyce had an assignment for me and Jeff...go out and celebrate Henry doing well. So Jeff and I went to see "Transformers" in the evening. Afterward, we went to the hospital. Kathy had weighed Henry at 1480 grams. After changing Henry's diaper four times (consequently, I doubt that he was still 1480 grams), we took him out of his isolette. I held him first, and he did some nursing for a little while. Then, Jeff did some holding. After we put him in the isolette, Holly helped us give him a sponge bath, which Henry didn't mind too much. He seemed exhausted after it and went to sleep. It looked like he was going to have a nice deep sleep. When we left, the lights were dim and the pod was quiet (a rare thing).

Jurassic Pod

On Saturday night, Marcie was Henry's evening nurse. She had already weighed Henry by the time we got there. He was down 40 grams to 1410 grams. Jeff kangarooed Henry for a while. Marcie turned off all of the lights, so it was really dark in the pod (except for the light of the baby monitors).

I call Marcie before we went to bed. She said that Henry was quiet for about a half an hour after we left but then started to get fussy, so she held him for a while.

Around 8AM on Sunday, Jeff and I received a call from one of the pediatric residents in the NICU. She called to report that Henry had pulled out his feeding tube in the middle of the night. They think that it was out for about 20 minutes. For some reason, they ended up doing a blood test and found that his sugar levels had dropped to 34 and that such drops could indicate a sign of infection. They put an IV in Henry's foot, so that he could receive some dextrose. I told the resident that Henry has had infections where nothing was picked up on the CBC, but the CRP had picked it up. The resident said she would mention it during rounds to the attending doctor.

So, Jeff and I headed right down to the NICU. Joyce was surprised to see us because my dad had told her that my mom was coming in the morning (that was the original plan). I explained that we had been called by the resident about the blood sugar levels and possible infection. Joyce didn't think that there was as much cause for alarm because Henry, other than looking pale, hadn't shown any signs of problems. After rounds, Joyce had Dr. Edde to talk with us. Dr. Edde doesn't place much faith in the CRP test. The problems with running the CRP is that it takes 4 times as much blood as the CBC. So, we'll hold off on that testing until Henry shows signs of infection. The most plausible explanation for Henry's sugar drop may be that the stopping of the continuous feed while his feeding tube was out. Therefore, they will have to monitor him closely whenever they decide to condense the feedings rather than have them run continuously. Dr. Edde was concerned about the low sugar levels as the 50s is the preferred minimum on the sugar levels. At last check, Henry's crit level was back to 23.5 and his sugar levels were 56.

The census in the NICU was down to 19, so Karin had to shut down pod four. Joyce gave us some options on where Henry was moved. We could move to the isolation room. That's a nice space because it is a small, single room. The disadvantages are: (1) it opens up onto the hallway, which has a lot of traffic, and (2) if a baby needed isolation, then Henry would have to be moved again. The second option was pod three, or what Jeff and I have dubbed "Jurassic Pod," in a corner space. We cringed at Jurassic Pod because it has a few screamers in it. We call it Jurassic Pod because there is one baby in the pod that sounds like what we can only imagine a baby pterodactyl must have sounded like (which we could hear from pod four). I asked Joyce about pods one and two. But Joyce pointed out that although pod three has the screamers, pods one and two have the beeping machines. So, we decided to take the corner spot in Jurassic Pod.

The other big news of the day was that Joyce had me nurse Henry for the first time. Henry had been rooting. He did nursed for a couple minutes and then got tired. But it was a good sign.

Kathy came on duty at 3PM. Jeff and I left around 4:30PM. After we left, Kathy moved Henry into Jurassic Pod.

Jeff and I came back in the evening. Kathy had taken his head circumference, which read at 28.25 cm. That's a 1.25 cm increase over last week. He's almost on the growth curve now! He also grew 2 cm in length over the week.

I tried nursing Henry again. But he was too tired. Then, Jeff kangarooed with him. Holly came on duty at 11PM. We were going to give him a bath but decided to wait until the doctors decided about the blood transfusion. Kathy had prepared a new isolette for Henry before she left. Holly got everything in the isolette switched over. Once in his new isolette, she weighed him four times (1390, 1410, 1430, and 1430 grams). She was assuming that the 1430 grams was the right number. Jeff and I suspect it was a little lower because he has the IV in his foot. Holly mentioned that one of the reasons that they look at week trends rather than day-to-day fluctuations is measurement error with the equipment.

When we left, Henry was doing fine in his new bed.

Adventures with the Temp Probe

Last night was a good night. Kathy was his evening nurse. She and Jeff changed a diaper weighing 42 grams...rather impressive considering that he hasn't been on Lasix in a couple days. Jeff did some kangarooing with Henry. I called to check in on them and talked with Kathy. She received the lab results and his reticulation count was high (retic count of 4), meaning that his body has begun to produce red blood cells on his own. Consequently, he won't be getting the blood transfusion. But they will continue to monitor his hematocrit levels...just to make sure that his hematocrit levels don't get too much lower. The big news of the evening was that Henry gained another 50 grams (post-42 gram diaper). He weighed 1450 grams (3 lbs 3 oz).

Today, his primary Lisa G. was on duty. She'll be leaving soon to take another job in administration, so he'll get a new primary(ies). I am hoping that they are Joyce, Kathy, and Holly (who are currently associates, meaning that they won't get Henry if one of his primaries is on duty).

According to Lisa, Henry had a quiet morning. She checked his hematocrit levels, and they were 29 and 30, which is much better than 23.5. I changed Henry's diaper and did skin-to-skin with him for a couple hours around noon. He was pretty relaxed during the kangaroo session, which was good because it was rather noisy in the room. The mother of the baby next to Henry only speaks Spanish. So the lactation consultant had to translate a lengthy conversation between her and Lisa. I don't know why translators have to speak at a loud conversational level. There are signs around the NICU that say that babies can't sleep well when exposed to more than 55 decibels of sound. The average conversation is 60 decibels. Hence, you need to speak in a quiet voice when in the NICU. This is the third translator who has been loud, loud, loud in the past week. I finally asked Lisa to ask them to speak quietly. I had been holding a fleece blanket over Henry's ear for most of the conversation and was getting a bit tired of trying to balance (with one hand) holding the blanket over his ear, getting him to nuzzle, and holding the cannula tubes in his nose (the tape was coming undone on the tubes). The other hand was supporting Henry's body.

Henry didn't like being put back in his isolette. He kicked up a fuss and kept desating. To make a long story short, he went through three diapers in 10 minutes. It looks like he is digesting food well. Lisa suspects that he will not have put on weight when he is weighed tonight, given his output.

My mom came around 3PM. Henry's isolette was really warm. The temp probes were screwed up again. So we spent the better part of 2 hours trying to make sure that he didn't get too hot. The temp probe is a wire that hooks into the isolette on one end and attaches to the baby under a little duck sticker at the other end. This morning, Lisa reported that the temp probe temperature matched the hand held thermometer that is used under his arm. When I took his temperature before skin-to-skin, it was 0.7 degrees Celsius off. He was fine with the hand held thermometer, so things were OK. When we put him back into the isolette, the temp probe was about 1 degree off, which was frustrating. The isolette adjusts the temperature inside the isolette based on what the temp probe says. So when the temp probe doesn't work correctly, it really screws things up. Today, it made his isolette feel like a sauna.

Henry was fine when I left around 5PM. My mom stayed to watch over the temperature situation.

Dropping the Ball

Grandpa Kenski visited Henry at 8AM. Grandma Kenski took the 10AM shift. Carol C. was his nurse. Henry was fussing, so Carol had Grandma hold him for a while. When I got there around noon, Grandma was holding him. Henry seemed content. I asked about the blood transfusion. According to Carol, the doctors hadn't made a decision because they were waiting for the lab results.

Around 2:15PM, my mom and I put Henry back into his isolette to change his diaper. Then, I did kangaroo care with him. I asked about the lab results around 3:45PM. When Carol looked at the computer, no lab results appeared. So she asked a resident about it. The resident said she would be right back with the numbers. She wasn't right back.

Jeff came to the hospital. We put Henry back into the isolette to change his diaper around 5PM. Around 5:30PM, the resident Becky said that Carol had mentioned that I had some questions. I asked whether or not Henry was going to have the blood transfusion given his low hematocrit levels. She gave me the same old schpeal about hematocrit levels and how they had to find out the reticulation counts before doing a blood transfusion. I refrained from saying "duh." I simply said that the lab results should have shown up, because Holly had ordered the reticulation tests before she left this morning. After practically living in an intensive care unit for nearly 10 weeks now, I didn't need the basic tutorial on hematocrit levels, which makes the doctors sound knowledgeable because they get to use big words and hence impress parents of patients who then assume that the doctors are on the ball. I would like them to actually take action and explain their decisions.

The lab results hadn't shown up, so the doctor, Becky, went to find out about them. She came back around 5:45PM. Basically, the lab tests had been canceled because the sample of blood was too small, but the lab didn't think to tell the NICU staff that the lab results had been canceled and the NICU staff didn't bother following up on them. So, the doctor put a rush order on the blood test. By the time I left at 6:15PM, they still hadn't drawn the blood yet. Once the blood is delivered to the lab, it will take at least 4 hours to get some results back.

To say that I'm frustrated right now is the understatement of the year. I am angry that we'd constantly been told by many nurses over the past few weeks not to worry about the temperature probe on the isolette (not one nurse, but many). I'm not happy with myself for not checking his temperature when the probe was off. But the staff had been talking about removing the probe because they thought he was at the point where he could go into an open-aired crib. I am angry that no one thought my son was important enough to follow up on his blood tests today. I strongly suspect that if Holly had been on duty, she would have checked. But she can't be there all the time. It makes me feel like we need to keep a 24/7 watch over Henry. When I'm not in the hospital, I need to do research on my own to get myself up to speed on the medical literature because if I don't watch Henry's back, he could get hurt.

Despite the realization that Jeff and I have to stay hyper-vigilant, I'm a bit anxious knowing that our trio, Joyce/Kathy/Holly, won't be be on duty until Sunday. They know Henry well. And, I feel that they really care for him as a person. Moreover, Joyce is a thinker. Some nurses are competent, but they are just trying to get to the end of their shift without thinking beyond it (not our trio). Joyce, on the other hand, thinks about Henry's long-term goals. Under her suggestion, Henry's oxygen percentage has remained about the same, but the flow has been weaned. Today, it was down to .7 liters of flow. Kathy knows Henry's personality well and picks up on details in his body language. She also has a good NICU voice (enunciates well and always speaks softly). And, Holly has been great on the parent front. She communicates very well with me and Jeff and has gone above her job description by giving me her home telephone number. All three are stronger than their good colleagues in other areas as well (e.g., body positioning of baby in isolette, having the milk tube ready before the alarms go off on the continuous feed, checking on the monitors immediately when the alarms go off, keeping their voices quiet, etc.).

Henry was pretty feisty today. He's not fussy without a cause. Henry's actions are logical. When he doesn't want to be touched by the nurses during cares, he desats. When he wants his pacifier, he desats until someone holds it in his mouth. When he's laying on a tube that he doesn't want under him, he desats until he is placed in a more comfortable position. When he doesn't want to be in his isolette, he desats until he is held. And when he's happy, he lifts his eyebrows up or smiles.

Jeff is at the hospital now. He sent me home to relax because I've been running on fumes the last couple of weeks. The stress of the situation really hit me hard the past two weeks. I apologize to all my friends and family for not responding to emails for the last 10 weeks. I do read them though, and I appreciate your thoughts and prayers.

Jeff will give an update when he gets back. I suspect that he is going to do some kangaroo care tonight. I'm sure that would make Henry happy.

Chilled Out

Yesterday was overall a good day. Henry is 1400 grams (3lbs 1oz). He continues to grow like a weed. He seems like he has some water weight, but it doesn't seem to be too much. Kathy/Holly/Joyce were his nurses again yesterday. Nadine stopped by for an update. Kate spent most of the afternoon holding him.

The excitement for the day happened when Kate and I visited at night. When we got there Henry was resting very peacefully. We decided to let him rest rather than waking him up to hold him. We noticed that his temperature reading on the isolette was rather low. However, there were problems with his temperature probe earlier in the day so we didn't think much of it. The probes regularly become detached and some isolettes just don't read very accurately.

When Holly arrived we were going to take Henry out and give him a bath for the first time. Holly decided to take a temperature before hand to make sure he was up to the task. She could not get a reading from the thermometer. She tried another and then another and still could not get a reading. It became clear that the isolette temperature reading was not wrong, he was cold, less than 95 degrees.

He was wrapped in warm blankets and the temperature in his isolette was turned up. He warmed up rather quickly. However, Kate and I feel awful that we left him in there for 2 hours thinking he was being nice and calm when really he was probably near hypothermic. Apparently Kathy felt very bad about it as well. She called in a couple times during the night to check on him.

The big question is what triggered the sudden drop in temp? His isolette had been set at a fixed temperature a couple days ago and he seemed to manage his body temp just fine during those days. He had pulled out his feeding tube around 8 or 9pm and it is possible that he got wet and that triggered the episode. However, it was also a possible sign of infection.

Kate called after we got home and asked that they do a CBC (complete blood culture) to see if he had an infection. It appears there is no infection. However, his hematocrit is very low, 23.5. This means the number of red blood cells in his body is very low. If it gets too low they give him a transfusion. He has been transfused before with levels of 29.5 and 26. It is reasonable to assume he will get a transfusion today since he is well below that.

They hold off on the transfusions because if they give him red blood cells his body won't make it's own. The level of red blood cells needs to hit a certain low threshold to trigger the body to make more. They don't want to transfuse before he hits that low threshold because it is better for him to make his own. However, it seems that at some point they decide that his body just isn't going to do it and that's when they give him a blood transfusion.

It is rather disturbing that if Kate hadn't asked for it, he would not have had the CBC and it would have been Sunday before they checked is hematocrit level again. So again it seems to prove the point that you can't blindly put your faith in medical personnel. They can do great things but they have many patients and tend to like to follow guidelines for "normal" patients. Dr. Cahan has said in the past that you can't trust Henry and she is right. He is a special guy and doesn't fall under many categories that can be considered normal.

So what should have been a great day turned into a pretty crappy one. Just when we were feeling like we could let down our guard and maybe even take a day off we get this wake up call. It certainly could have been worse but it can't be good to be that cold for a couple of hours.

We've been pretty lax on getting pictures lately. The area he is in is pretty dark most of the time so it is really hard to get a decent picture. However, this one from last night turned out pretty well.

3 lbs. Milestone Reached!

Today was a good day. Joyce, Kathy, and Holly were on duty again. I called Joyce in the morning, and she reported that Henry was doing well and that he was back his old self (meaning that his feist was back). Grandpa Kenski visited him first thing in the morning. Then, Grandma Kenski visited him at the lunch hour.

Jeff kangarooed with Henry in the afternoon. Kathy told Jeff that they are setting Henry's isolette to a fixed temperature with the hope that Henry is now mature enough to maintain an appropriate body temperature on his own. Previously, the isolette was set to adjust to Henry's temperature.

Henry has one less medication to deal with. They are no longer giving him potassium because he's off Lasix.

Jeff dropped me off at the hospital before he went to pick up Carolyn and Chris at the airport around 9:45PM. My sister Carolyn is setting up a residence in Pullman, Washington, where she'll be attending vet school at Washington State University in the fall. I forgot my identification, which is required after 9PM, but a very nice security guard let me through because I have a medical bracelet for the NICU. It was put on my wrist when Henry was admitted. Jeff had one too, but his fell off after a month, so he carries it in his wallet.

When I arrived, Kathy told me that Henry had reached the 3 lbs. mark! She said that Henry was getting fat. That's a compliment in preemieland. I kangarooed with Henry. Henry's saturations were good during kangaroo care. Kathy helped get Henry out of the isolette and into my arms. She mentioned that Henry has a temper and is going to be a handful when he's older. I was pleased to hear it. I was so worried about him yesterday, when he was so passive. Jeff made it to the NICU while we were doing skin-to-skin. Holly did her shift change with Kathy at 11PM. Both Holly and Kathy mentioned this evening that Henry might be placed in a bassinet soon, if he can hold his temperature. He has to hold it, while the isolette is kept at 27 degree Celcius. The isolette is currently being kept at 27.6 degrees Celcius.

Jeff got Henry into the isolette when we'd finished skin-to-skin around 12:45AM. Henry could have gone on longer, but it was getting late and Jeff has to work tomorrow. Holly listened to Henry's chest and stomach. She said that his bowels sounded active (that's good). His urine output was good today, even without the Lasix. On day shift, he put out 2.7 mls per hour. His minimum goal at this point is 2.0. So the 2.7 was very good indeed.

Once Henry was settled, he spit up a bit of milk and made a bit of a mess of his blankets. Holly suctioned him out and helped get him settled. Henry was rather alert after kangaroo care, which is pretty normal for him. Holly mentioned that Henry's getting much more social. He smiled at her.

Standing Watch

Today was a fairly active day. Kate will likely have more to add because she was involved more in the goings on. I just wanted to give a quick update. The tag team of Joyce, Kathy and Holly were taking care of Henry today. Overall he is doing well. His weight is up to 1330 grams (2 lbs 15 oz). His urine output was at acceptable levels which is good since he was taken off the diuretic Lasix. He probably is still carrying a significant amount of water weight, although he does not look swollen as he has in the past. He is up to 7.5 mls per hour of milk which is still being fortified with formula to add calories. Kate held him for several hours today and I held him for about 2 hours tonight.

In the morning Kate was told that Henry had several apnea/brady episodes overnight. This was a concern because that was really the only sign he gave last time he was diagnosed with NEC (a serious intestinal condition). So at Kate's direction they did an xray of the intestines and also took a picture of the lungs while they were at it. They did not find any signs of NEC or fluid in the lungs. So at this point it looks like he is just being a preemie. Holly explained that before they can go home they have to go 5 days without and apnea or brady. She said they frequently won't do that until the very end of their stay in the nicu. That is still a long way off for us.

Kate is doing an excellent job of being an advocate for Henry. She reads his charts every day and researches every possible condition he might encounter and continually asks questions. It is also nice to have the Joyce/Kathy/Holly team take care of him so often because they really know him by now. Today when Kate was raising her concerns about the increased apnea/brady episodes Joyce was able to back her up by confirming that such an increase was the only sign he gave previously of being sick. On top of that Grandma and Grandpa Kenski are there every day keeping an eye on him. I feel that Henry is in good hands with the doctors and nurses but it is good to keep them on their toes. The staff should all know that when it comes to Henry, they better bring their A game because they aren't going to get away with anything half assed when it comes to this kid.

Push Ups

Carol was Henry's nurse today. We've seen Carol several times around the NICU, but I don't think that she has ever taken care of Henry before.

The exciting news in the morning was that his Grandpa K got to hold him for the first time! His Aunt Erin stopped by during the lunch hour. She was impressed by Henry's ability to do push ups in his isolette when on his tummy. Aunt Erin helped contain Henry while I changed his diaper. Then, I kangarooed with him for quite a few hours in the afternoon. Jeff came later in the afternoon and is witness to Henry doing a push up that launched him at least three or four inches off my chest. He received bonus points for height and distance. It was very impressive. But it also scared me a bit because I had no idea he had such muscle strength. And, it will make me a little wary of sleeping while holding him. Grandma K arrived in late afternoon. She took over holding Henry for me. I think that his sats were better when my mom was holding him than when I was holding him.

When I was holding him, the nose prongs from the cannula weren't in tight, and I could hear air escaping from his nose. He was surfing, so Carol turned up the oxygen from 32% to 50%. I don't know if he really needed quite that much, but it was a quick fix during our kangaroo time. She adjusted his prongs after Henry was put back in his isolette. And Henry became the guinnea pig for a new nose tape device that is supposed to hold the tubes in place better. Seemed to be working. By the time Jeff and I came back in the evening, his oxygen had been turned back down to 34%.

In other news, the resident who had been taking care of him during June disappeared without saying goodbye. Her style was much less interactive than her predecessor, Dr. McLain, who gave me updates every time she saw me (whether they were good, bad, or neutral). Dr. McLain's approach was excellent. And perhaps a good deal of the anxiety that I've felt this last month is in part because we haven't received continual updates from the doctors. The interactions have been few and far between. The nurses are excellent when it comes to telling me about his current status, but the doctors are the ones who are supposed to come up with the game plan for recovery. Some communication on that front would be helpful. Apparently, Henry has been assigned a new resident for the month of July. I asked Carol who that would be, because s/he hadn't introduced herself/himself to us yet. Carol found out who the resident was around and asked someone to tell him that I wanted to meet him. He never showed up even though he was around the NICU today.

The doctors decided to take Henry off of Lasix. Jeff and I were rather surprised because his output on non-Lasix days hasn't exactly been stellar. Carol said that she didn't know why they reached the decision they did but thought that if they weren't getting as much out of Henry on Lasix days, they probably didn't want to continue the Lasix because it would dehydrate him. I feel like his output on Lasix days has been relatively consistent (around 8 mls per hour for the first 12 hours after receiving it). That would suggest to me that the Lasix is doing something. On the other hand, the nurses have reported that his chest sounds clear. So if there isn't fluid in the lungs and he doesn't have edema, then it is probably a good thing to get rid of the Lasix. The Lasix takes calcium, potassium, and sodium from the body. And, Henry has to take potassium and sodium supplements because of it.

Angela was Henry's evening nurse. We hadn't met Angela before. She had already done his cares by the time we arrived. He weighed 1270 grams. That's a 40 gram increase from the day before. Some of it, of course, may be fluid. Henry was pretty sound asleep when we arrived at the NICU around 9PM. We waited until he stirred around 10:30PM before taking him out of his isolette. Jeff and Henry did skin-to-skin. Both of them slept soundly during it. Both were a bit cranky when we put Henry back in his isolette around midnight. Jeff has never been a good napper. And, Henry is always a bit cranky when we put him back into his isolette. He much prefers to sleep skin-to-skin with his daddy. His sats were great during skin-to-skin. They were in the high 90s.

All in all, today was a good day.

Ski Jumper

Henry has picked up a new behavior recently. He lays flat with his legs straight out and his arms straight down perfectly in line with his body. We first saw this one or two nights ago and he's done it a few times since. I think he looks like a ski jumper as they flatten themselves out trying to catch the air. I don't think there have been many ski jumpers from Tucson Arizona but you never know. Ski jumpers have a saying, "Fat doesn't fly". Henry would certainly fit in with that culture, all muscle, no fat.

He has been doing ok recently. There's no major news. He is growing and continuing to take the breast milk, which is great. He has been rather fussy, especially today. He just can't seem to get comfortable and has more frequent episodes where his oxygen level drops and sometime his heart rate as well, which is not so good. The concern is that this is leading to another episode of NEC which would put a stop to his feeding and could require surgery. Last time he had NEC he didn't give the classic signs but did have increased apnea and brady spells which eventually led to enough concern that further tests were orderd and the NEC was discovered.

However, it might be nothing. He had one night a week or so ago where he was crying every few minutes and seemed to be in real distress. It passed without intervention. Might be gas, constepation, the formula they are supplementing his breast milk with, what Kate ate the day the breast milk was made, the vitamins they are giving him, reflux, the phase of the moon or something else. I wish he could just tell me "Hey, bald guy, don't just stand there, get in here and change my diaper!" or "Excuse me, but the iron level in my vitamin supplements has caused my bowel movements to be increasingly difficult thus causing me to strain which in turn lowers the oxygen saturation in my blood." But until my psychic abilities emerge we'll just have to wait and hope for the best.

Penny was his nurse during the day today and Melissa was on the night shift. Tonight he weighed in at 1230 grams (2 lbs 13.5 oz). This was the same as he was last night which is good because today was a Lasix day. I look back and see that he was 1060 grams on 6/24. So in the last 7 days he has been growing at just under 25 grams per day. That is really good news. It should be between 20-30 per day so he is well within the normal range. Hopefully he can keep it up. His length and his head circumference both grew 1cm this week. That is also good news. They don't care so much about the length but the head circumference is important to show that his brain is developing. The normal range is .5-1cm per week. He is behind so he needs to have the growth be at the high end of normal for a while to catch up.

Kate spoke to Dr. Wispe this afternoon regarding his growth. He said that she is right to be concerned about his slow growth. He has suffered several setbacks that prevented him from taking breast milk and so he is generally behind where they would like him to be. The doctors are very hesitant to give out numbers but Dr. Wispe gave Henry a 50/50 chance of being retarded/normal. I don't know what good that little stat does. We already know that he has a high risk of some sort of impairment but that doesn't change his course of treatment or how we relate to him. There's still a 100% chance he is our son and we are going to love him no matter what. We won't know the full effects of this whole episode on his developmental state for years. Right now he is doing very well. If he is going to have problems later, well, we'll cross that bridge when we come to it.