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.
Friday, July 6, 2007
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.
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.
Thursday, July 5, 2007
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.
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.
Wednesday, July 4, 2007
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.
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.
Tuesday, July 3, 2007
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.
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.
Monday, July 2, 2007
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.
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.
Saturday, June 30, 2007
Firsts on Friday
Joyce was Henry's nurse yesterday and today. Yesterday, Henry and I kangarooed for a while. Joyce received the OK from the doctor to let Henry nuzzle. We won't be doing full breastfeeding for a while, I suspect, because of Henry being on the continous feeds. And, he's still a little young (gestationally speaking) to be doing the sucking, swallowing, and breathing at the same time. Joyce talked to me about immunization shots for Henry, because he's now two months old. Jeff and I are going to do some research first, but I suspect that we'll go ahead with them. Henry doesn't have a whole lot of muscles in which to stick the shots, so I think that we'll have the 5 shots spread out over a week's time. Kathy came on duty around 3PM. She helped me put Henry back into his isolette. He was a little fussy when we put him back. When I left, my mom was comforting him. Because he continued to be restless, Kathy had my mom hold him after I left!
Jeff and I went out with two of our friends to see Much Ado About Nothing at Reid Park. We arrived for our evening NICU visit shortly before 11PM. Kathy reported that she had given Henry his first bath, and he enjoyed the water and having his hair washed. He didn't enjoy his mouth being wiped. She weighed him at 1060 grams. That was down from the previous evening, but not surprising as it had been a Lasix day. Holly arrived shortly after we did. Jeff did kangaroo care with Henry for a while.
Today, I held Henry without doing skin-to-skin because the reclining chair had been taken by one of the nurses so that her patient could do kangaroo care. I was disappointed because the kangaroo care is optimal for Henry's health. It is unfortunate that there is only one recliner in the entire NICU. At least the other people using it were doing kangaroo care. So few parents do it, which is good for us to the extent that we get to use the chair a lot (at least lately because our pod is removed from view of others, making it less likely for other people to snag the chair). But it is clearly not so good for the babies who could really use skin-to-skin contact for their health. I asked Joyce to whom I should talk about the chair situation. I've heard from several nurses that they have been waiting for recliners for months, which is silly. Buying chairs suitable for the NICU isn't rocket science. I plan to talk to some of the administrators this coming week about it.
Henry very much likes to be held. My mom held him this afternoon as well. His saturation levels were excellent when my mom held him (usually staying around 96%-97%). After grandma left, I continued to hold Henry. I think that he's getting to the point where he doesn't like being left alone in his isolette.
Jeff and I went out with two of our friends to see Much Ado About Nothing at Reid Park. We arrived for our evening NICU visit shortly before 11PM. Kathy reported that she had given Henry his first bath, and he enjoyed the water and having his hair washed. He didn't enjoy his mouth being wiped. She weighed him at 1060 grams. That was down from the previous evening, but not surprising as it had been a Lasix day. Holly arrived shortly after we did. Jeff did kangaroo care with Henry for a while.
Today, I held Henry without doing skin-to-skin because the reclining chair had been taken by one of the nurses so that her patient could do kangaroo care. I was disappointed because the kangaroo care is optimal for Henry's health. It is unfortunate that there is only one recliner in the entire NICU. At least the other people using it were doing kangaroo care. So few parents do it, which is good for us to the extent that we get to use the chair a lot (at least lately because our pod is removed from view of others, making it less likely for other people to snag the chair). But it is clearly not so good for the babies who could really use skin-to-skin contact for their health. I asked Joyce to whom I should talk about the chair situation. I've heard from several nurses that they have been waiting for recliners for months, which is silly. Buying chairs suitable for the NICU isn't rocket science. I plan to talk to some of the administrators this coming week about it.
Henry very much likes to be held. My mom held him this afternoon as well. His saturation levels were excellent when my mom held him (usually staying around 96%-97%). After grandma left, I continued to hold Henry. I think that he's getting to the point where he doesn't like being left alone in his isolette.
Friday, June 29, 2007
No PICs on Purpose
Henry had a good day yesterday. Joyce and Holly were back from vacation. Holly had in-service training in the morning, so she stopped by to see Henry and then we saw her again at 11PM when her shift began.
Joyce said that she was a little worried when she first came to work and didn't see his name on the board initially. There are 33 slot numbers on the board that correspond the various stalls. 31 of them are for the slots in the pods, and 2 of them are the isolation rooms. The board is white. For some reason, slot 33 is thinner than the other slots on the board and it is green. In addition, Henry's status is green, so the green pen on the green slot doesn't show up well. Anyway, she was much relieved when she found his name.
Henry had a treat for Joyce. He pulled out his feeding tube for the third time in the past week. At least Emily, who was on the night shift Wednesday night, had changed his isolette cover so that it was a half cover rather than the full cover. The advantage of the full cover is that it keeps the isolette dark, which is a good thing. But, if he's on continuous feeds and pulls the feeding tube out and it isn't spotted right away (there are no alarms to signal that a feeding tube has been removed), then it can create quite a mess.
During the day, Henry was restful. He and I spent about 4 hours kangarooing in the afternoon. I've noticed that he gets a little restless if kept in the same position for more than an hour, so I ended up craddling him at one point, rather than the straight tummy on chest position. It was the first time that I had moved him from tummy to back, and then back to tummy by myself. He's getting a little bigger, so it is much easier to find places to put your hands without disrupting his tubes and leads.
While we were doing skin-to-skin, Dr. Van Handel stopped by. Henry had four nights of weight gain in a row, so they gave the order to have the PIC line removed. Currently, there's no hyperalimentation (also known as TPN) running through the line. It is being kept open with a saline solution at 1 ml per hour. Dr. Van Handel's thought was to remove the PIC line and increase his feeds (gradually) by 1 ml per hour, so that Henry gets the extra nutrition and calories.
I asked Dr. Van Handel about Henry's IUGR (intrauterine growth restriction) because when born, Henry fell the the bottom 10th percentile on weight for his gestational age. There are some developmental complications that can arise from it (not that they necessarily appear, but risks increase significantly with IUGR). She was going to look into it for me, but I suspect that we won't have a lot of answers until he's four or five years old.
Kathy came on duty at 3PM. She took out his PIC line. PIC number 7 is out of his system...at least, it is elective this time. Another advantage of removing the PIC line is that it removes a potential site of infection.
Currently, he only has seven wires and tubes attached to his body! So progress has been made. He has three leads attached by wires, the cannula tubes, the pulsox, the temperature probe, and the feeding tube. The leads are used to measure his heart and respiration rates. The cannula tubes are used to give him oxygen. The pulsox is used to measure the oxygen saturation levels of the blood. The temperature probe is used to measure his temperature in the isolette (it's actually plugged into it); if Henry's temperature is high, the isolette is supposed to turn itself down, and if his temperature is low, it should increase the temperature inside the isolette. And the feeding tube is for the breast milk and for his medications and vitamins.
Jeff picked me up at the hospital during shift change, and we went to dinner. When we returned, Kathy asked us if we wanted her help in getting set up for the kangaroo care or if we were ready to do it ourselves. We decided to give it a whirl. So, we did his cares and then Jeff got ready in the chair. I managed to get Henry from the isolette to Jeff's chest without removing any tubes and wires. It's much nicer without having the PIC line to worry about.
Holly came on duty at 11PM. She helped us put Henry back into his isolette. We did his cares and then she weighed him. He had a weight gain of 40 grams. He now weighs 1190 grams.
I recently called Joyce to get the morning update. Henry was doing fine. He had one dip during the night, but other than that, it was an uneventful evening.
Joyce said that she was a little worried when she first came to work and didn't see his name on the board initially. There are 33 slot numbers on the board that correspond the various stalls. 31 of them are for the slots in the pods, and 2 of them are the isolation rooms. The board is white. For some reason, slot 33 is thinner than the other slots on the board and it is green. In addition, Henry's status is green, so the green pen on the green slot doesn't show up well. Anyway, she was much relieved when she found his name.
Henry had a treat for Joyce. He pulled out his feeding tube for the third time in the past week. At least Emily, who was on the night shift Wednesday night, had changed his isolette cover so that it was a half cover rather than the full cover. The advantage of the full cover is that it keeps the isolette dark, which is a good thing. But, if he's on continuous feeds and pulls the feeding tube out and it isn't spotted right away (there are no alarms to signal that a feeding tube has been removed), then it can create quite a mess.
During the day, Henry was restful. He and I spent about 4 hours kangarooing in the afternoon. I've noticed that he gets a little restless if kept in the same position for more than an hour, so I ended up craddling him at one point, rather than the straight tummy on chest position. It was the first time that I had moved him from tummy to back, and then back to tummy by myself. He's getting a little bigger, so it is much easier to find places to put your hands without disrupting his tubes and leads.
While we were doing skin-to-skin, Dr. Van Handel stopped by. Henry had four nights of weight gain in a row, so they gave the order to have the PIC line removed. Currently, there's no hyperalimentation (also known as TPN) running through the line. It is being kept open with a saline solution at 1 ml per hour. Dr. Van Handel's thought was to remove the PIC line and increase his feeds (gradually) by 1 ml per hour, so that Henry gets the extra nutrition and calories.
I asked Dr. Van Handel about Henry's IUGR (intrauterine growth restriction) because when born, Henry fell the the bottom 10th percentile on weight for his gestational age. There are some developmental complications that can arise from it (not that they necessarily appear, but risks increase significantly with IUGR). She was going to look into it for me, but I suspect that we won't have a lot of answers until he's four or five years old.
Kathy came on duty at 3PM. She took out his PIC line. PIC number 7 is out of his system...at least, it is elective this time. Another advantage of removing the PIC line is that it removes a potential site of infection.
Currently, he only has seven wires and tubes attached to his body! So progress has been made. He has three leads attached by wires, the cannula tubes, the pulsox, the temperature probe, and the feeding tube. The leads are used to measure his heart and respiration rates. The cannula tubes are used to give him oxygen. The pulsox is used to measure the oxygen saturation levels of the blood. The temperature probe is used to measure his temperature in the isolette (it's actually plugged into it); if Henry's temperature is high, the isolette is supposed to turn itself down, and if his temperature is low, it should increase the temperature inside the isolette. And the feeding tube is for the breast milk and for his medications and vitamins.
Jeff picked me up at the hospital during shift change, and we went to dinner. When we returned, Kathy asked us if we wanted her help in getting set up for the kangaroo care or if we were ready to do it ourselves. We decided to give it a whirl. So, we did his cares and then Jeff got ready in the chair. I managed to get Henry from the isolette to Jeff's chest without removing any tubes and wires. It's much nicer without having the PIC line to worry about.Holly came on duty at 11PM. She helped us put Henry back into his isolette. We did his cares and then she weighed him. He had a weight gain of 40 grams. He now weighs 1190 grams.
I recently called Joyce to get the morning update. Henry was doing fine. He had one dip during the night, but other than that, it was an uneventful evening.
Thursday, June 28, 2007
Henry 2.0
A new milestone tonight, Henry now weighs twice his birth weight! He was born at 570 grams and is now up to 1150 grams as of tonight. He gained 20 grams despite this being a lasix day. I'm not sure if the lasix is losing its effectiveness or if he is truly gaining that much weight. He looks like he is gaining more than just water weight. Hopefully he can keep it up.
This afternoon Lisa was his nurse. She was a bit concerned about the amount of air she was pulling out of his stomach. She thought he might have a hole in the tube or it might be placed incorrectly so she pulled it out. She had Henry the nurse put it back in because she couldn't get it down after a couple tries and didn't want to cause trauma to his nose. She knew that Henry the nurse had been successful getting the nose tube down when our son had pulled it out over the weekend.
This evening Emily had to replace the feeding tube again because Henry pulled it out. He does quite well at pulling those tubes out. She was not seeing the large amounts of air in the stomach that Lisa was, so maybe the tube replacement did help. She also said that he is still digesting well with very little remaining in his stomach.
Kate held him for a couple hours this afternoon during which time he did well. He is up on his oxygen to 30% from 28%. He seems to be sat surfing a little more the last couple days than he was. At this point, it isn't really a concern. They are trying to wean him down on the amount of oxygen he is getting but it could take a while.
Not much to report. No news is good news.
This afternoon Lisa was his nurse. She was a bit concerned about the amount of air she was pulling out of his stomach. She thought he might have a hole in the tube or it might be placed incorrectly so she pulled it out. She had Henry the nurse put it back in because she couldn't get it down after a couple tries and didn't want to cause trauma to his nose. She knew that Henry the nurse had been successful getting the nose tube down when our son had pulled it out over the weekend.
This evening Emily had to replace the feeding tube again because Henry pulled it out. He does quite well at pulling those tubes out. She was not seeing the large amounts of air in the stomach that Lisa was, so maybe the tube replacement did help. She also said that he is still digesting well with very little remaining in his stomach.
Kate held him for a couple hours this afternoon during which time he did well. He is up on his oxygen to 30% from 28%. He seems to be sat surfing a little more the last couple days than he was. At this point, it isn't really a concern. They are trying to wean him down on the amount of oxygen he is getting but it could take a while.
Not much to report. No news is good news.
Wednesday, June 27, 2007
Weight Increase, Probably Fluid
Last night (6/25), Jeff visited Henry and did kangaroo care with him. Arlene was his nurse. She weighed him at 1080 grams.
Tonight (6/26), Jeff and I went in together. Emily was Henry's nurse. She weighed him at 1130 grams. She said that she weighed him a few times just to make sure. That's a 50 gram increase. Given that it was a non-Lasix day and Henry's output was low, some of that is most likely fluid retention that will be released tomorrow. We had to wait awhile for the NICU's one recliner to become available. During that time, Henry's heartrate dipped below 100 but Jeff talked him out of it. A little while later, Henry did have a brady. Emily reported that Carol had mentioned that he'd been doing some sat surfing. The nurses have been instructed to wean Henry off the oxygen, so they aren't inclined to turn up the oxygen levels if Henry can recover on his own.
Jeff did skin-to-skin again with Henry. His surfing was less pronounced when he was on Jeff's chest. One of Henry's podmates, Julissa, is going home tomorrow. Her mom and Emily were giving her a bath while Jeff and Henry were kangarooing. I took some pictures of Julissa and her mom, which Jeff printed out when we got home. I'll take them into the NICU tomorrow before Julissa checks out. Henry's other podmate, Angel, went home today. So there is a light at the end of the tunnel. The NICU's current census is 24 babies. There's already a new baby in the slot that Angel formerly resided in.
After kangaroo care, Jeff and I changed Henry's diaper. Emily aspirated his stomach. It had 4 mls of milk in it, which is OK. It had about 1 ml of air in it too.
Tonight (6/26), Jeff and I went in together. Emily was Henry's nurse. She weighed him at 1130 grams. She said that she weighed him a few times just to make sure. That's a 50 gram increase. Given that it was a non-Lasix day and Henry's output was low, some of that is most likely fluid retention that will be released tomorrow. We had to wait awhile for the NICU's one recliner to become available. During that time, Henry's heartrate dipped below 100 but Jeff talked him out of it. A little while later, Henry did have a brady. Emily reported that Carol had mentioned that he'd been doing some sat surfing. The nurses have been instructed to wean Henry off the oxygen, so they aren't inclined to turn up the oxygen levels if Henry can recover on his own.Jeff did skin-to-skin again with Henry. His surfing was less pronounced when he was on Jeff's chest. One of Henry's podmates, Julissa, is going home tomorrow. Her mom and Emily were giving her a bath while Jeff and Henry were kangarooing. I took some pictures of Julissa and her mom, which Jeff printed out when we got home. I'll take them into the NICU tomorrow before Julissa checks out. Henry's other podmate, Angel, went home today. So there is a light at the end of the tunnel. The NICU's current census is 24 babies. There's already a new baby in the slot that Angel formerly resided in.
After kangaroo care, Jeff and I changed Henry's diaper. Emily aspirated his stomach. It had 4 mls of milk in it, which is OK. It had about 1 ml of air in it too.
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