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.

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.

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.

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.

Insurance Woes

My dad visited Henry this morning and said he looked great. Carol is his nurse today.

I called the NICU to get an update. I wasn't feeling well yesterday, so I didn't go into the NICU last night and am holding off until tonight. I don't know if I was really sick, just ate the wrong foods, or was just tired. I hate not going into the NICU to see him. But I can't take the chance of getting him sick, or any other baby sick for that matter.

Carol said that Henry had his eye exam. The doctor didn't find anything alarming. In other words, Henry's eyes look fine for his gestational age. It is common for preemies to have eye problems. But these eye problems don't appear until a little bit later. The eye problems occur from giving them too much oxygen (too much for the eyes, but obviously necessary for breathing) and from grow spurts. As I understand it, the capillaries in the eyes sometimes constrict, and this sometimes results in retinal detachment. They try to minimize the problems with the vessels with laser surgery. Sometimes these problems don't appear until after the baby is taken home. The eye doctor visits Henry once a week.

Carol reported that they are increasing the calories in the milk to 24 calories per ounce (2 more ounces than yesterday).

In other news, I'm trying to sort out some insurance problems. I received a call from UMC last week, Tuesday I think it was. The NICU social worker Laurel had told them that Henry had been covered for the standard 30 days but wasn't covered after that. I have no idea why the social worker didn't come and talk to me first. But this resulted in UMC calling me, obviously concerned about payment because his NICU stay is expensive. I told them that of course I had coverage for him. I called my Schaller Anderson case worker, Rhoda, to see what was going on. I explained that I had enrolled him through the UA benefits office well within the 30 days limits for qualifying events and had the confirmation email to show that he'd been logged into the UA benefits system as of 5/21 (I dropped off the paper work on 5/17). As near as Rhoda could tell, there were problems because some claims were filed under Henry and some were filed under Henry J; the Henry claims were getting rejected. His account is listed under Henry J, not Henry. So she told me to call the number on the back of my insurance card to sort it out.

On top of that, I received a letter from the insurance company stating that they weren't paying some testing done on 5/2 for Henry because he needed to be pre-certified. Considering that he's obviously inpatient and my emergency delivery was pre-certified within the time frame, the idea that I would have to pre-certify every single test done for him while he is in the NICU seems to me rather asinine.

I called the Schaller Anderson office today to sort this out. The customer service representative said that the Henry versus Henry J wouldn't be a problem. But we might have some hold ups because his claims are often coming under my last name, but the records have him listed under Jeff's last name. Officially, they admitted Henry into the NICU under my last name because they coordinate the babies with their mothers' names. We didn't filled out the birth certificate information until two days after he was born (5/2). At that point, his last name became his father's. I copied his birth certificate information for UA benefits, so they should have both our last names on file for Henry. But I suspect this might be an ongoing battle, although several of his claims have been paid. Some get put on hold, others do not. It is a mystery how they choose to pay some but not others.

In addition, they haven't validated Henry's pre-certification for his NICU stay because the hospital hasn't given Schaller Anderson a release date on Henry. I told the customer service representative that they weren't likely to give a release date because it could be anywhere from two to four months away. This is somewhat problematic because the letter on one of the claims requiring pre-certification says: "This claim will be pended for 60 days awaiting pre-certification. If no pre-certification is filed withing 60 days a denial letter will be sent." Well, what if the doctors don't give the insurance company a release date within 60 days? The customer service representative said that it should be OK because the pre-certification is on file but it hasn't been validated. So hopefully, being on file will be enough.

My mom is going to spend time with Henry this afternoon. She'll give me the Henry report when she gets back. That's all for now.

Sleepy Afternoon

Nancy was Henry's nurse today. My dad visited Henry in the morning. He said that he was doing great. His sats went down at one point. Nancy suctioned out his nose, and they rebounded to the high 90s. The cannula tends to dry out the nose, so it is easy for the passageways to get blocked (hence the oxygen can't get through as well and the sats go down).

When I came in the afternoon, Henry was sleeping soundly. Nancy asked me if I wanted to hold him but I decided to hold off, since he was looking so peaceful. Today is a Lasix day. Nancy had changed his diaper about 2 hours after his Lasix dose, and he had a 38 gram diaper. She detected the precursors of diaper rash, so she put in an order for Desitin. Desitin is sold over the counter, but in the hospital, it is treated as a medicine, so the nurses have to get prescriptions for it. It took a long time for Henry to stir. When he finally did, Nancy and I did his cares. While we were changing his diaper, she turned him on his side so I could get a good look at his backside. He still doesn't have fat on him. Got a good look at his skeletal structure, especially the pelvic bones and spine. He's one skinny baby.

Once we dealt with the diaper, which I think was 13 grams, Nancy aspirated his stomach. He had about an hour's worth of milk left in his stomach, which was partially digested. The color looked good. He also had almost a full tube (approximately 9 mls) of air, which Nancy got out. When they aspirate his stomach, they connect a tube that looks like your ordinary vaccination tube. But rather than pressing liquid into the system, they begin with an empty tube and pull liquids out. Once they analyze the liquids and get the air out of the tube, they push the liquids back into his stomach. On a continuous feeding schedule, having an hour's worth (or even up to two hour's worth) of milk in the stomach is fine.

The only other new thing today was that they have started adding calories to his breast milk. Breast milk, on average, contains 20 calories per ounce. They are adding 2 calories per ounce to that. Hopefully, that will help him gain weight.

I'll be interested to see how much he weighs tonight. We usually see decreases on his Lasix days. But the 38 gram diaper is far smaller than Saturday when he had his all time record breaking diaper of 69 grams. It may be the case that he doesn't have a whole lot more of excess fluid to lose. Nancy said that she didn't think he looked bloated. I don't think he looks swollen either. As I understand it, he's on the Lasix because they don't want his lungs to be filled with fluid, and his kidneys needed encouragement to get rid of the fluid. Yesterday (non-Lasix day), his urine output was 2.4 ml per hour. That's where it should be. So the question is: Is that average representative of what he'd do if he was taken off the Lasix? The general rule is that, at a minimum, he should be peeing at least 1 ml per hour. But 2 would be better. I'll be happy when he's off the Lasix because it strips calcium, sodium, and potassium from his system. Once he's off Lasix, he may not need the additional supplements.

In other news, he had an isolette change last night. It's nice when it is changed, because by the two-week mark, it gets kind of grungy.

Karin, one of the associate administrative nurses, stopped by to see how Henry and I were doing. She's originally from Sweden. By looking at her, it shows. She has beautiful natural blonde hair and blue eyes. Karin spent some time with us yesterday, when his day nurse went on a lunch break. I was a little down yesterday, and she was great. We spent most of the time talking about research. She heard that I taugh research methods and statistics. She's going back to school to get her bacherlor's degree in nursing. She became a nurse 20 years ago when only a general bachelor's degree was needed. She's currently taking a methods course. She analyzed data from a handwashing study that compared nurses who used antibacterial soap to those who used alcohol lotion (or what the staff often call "goop"). Basically, the finding was that nurses who use the soap eventually develop special bacteria that are resistent to the soap. Those who use the goop do not develop bacterial-resistant flora on their hands. The bacterial-resistant flora that are found on the soap using nurses are unique to the NICU in which the nurses work. So UMC nurses would have different flora on their hands from those who work in a different NICU across town. In any event, the conversation was a marriage of my general interest in research methods and my current obsession with handwashing, so I was enthralled.

That's all for now. When I left, Henry was sleeping, and my mom was staying with him.

Better Day

Today was a much better day. Kate's parents visited in the morning and let us know that Henry was doing well, calm and restful. Kate visited in the early afternoon and was able to hold him for a while and he continued to do well. Kate and I stopped by after 8pm and ran into her sister Carolyn who visited for a while. Again Henry was restful and calm. His weight was up to 1060 grams (2lbs 5oz). That wasn't as much of a gain as we would like to see on a non lasix day. Hopefully tomorrow he won't drop down below 1000 grams after the lasix. His day nurse was Henry again and his night nurse was Arlene who we had not seen before.

So I think this snuffs my potassium theory. I liked that theory but am glad to be wrong since being right would mean Henry suffering great discomfort twice a day. I think we'll stick with the gas pain theory for now. That makes me feel like I over reacted. But I guess that is something that parents, especially first time parents of sick children, have a right to do. Hopefully we didn't get the members of our blog audience too concerned. Welcome to that wonderful rollercoaster that everyone keeps telling us about.

Kate had an awkward conversation this afternoon when she went to visit. The nurse Henry was taking care of baby Henry again. He said he wanted to have a talk with her. He expressed concern over our stress levels and said that he didn't think we were having as positive an experience there as we could be having, that we focused on the negative. He mentioned that we needed to trust the staff and that they really knew what they were doing and if we had problems with them we could talk to them about it. He said that we were having an easy time of it in the nicu compared to many other babies. He also warned us not to over stimulate Henry because he knows that it is natural to want to touch and reassure a baby when it is stressed but that patting and rubbing motions are not good for preemies.

We know Henry was well meaning, but it did not have a positive effect on either of us. First, Henry has only taken care of baby Henry 3 times. We haven't seen him around when he has not been taking care of baby Henry either. So for him to feel like he knows enough about us and how we interact with our child and to lecture us on our emotional state was bizarre to say the least.

Secondly, his observations seem to be flat wrong. He specifically told Kate that I was stressed when I came in yesterday. Anyone who knows me would be hard pressed to find a time when they could categorize me as stressed. When I reflect on my interaction in nurse Henry's presence yesterday, I feel like I was calm and pleasant and basically spent the majority of the time asleep with Henry on my chest. Both Kate and I also know that for preemies you don't pat or rub, you gently hold in a way that contains the baby to simulate a womb where they have boundaries. On top of that we really don't touch him very much. We both take the approach that if he ain't broke, don't fix him, meaning don't touch him if he is doing ok.

The comments about not having as positive an experience as we could have actually made me feel upset. We are appreciative that Henry is alive and feel he is doing well given the circumstances. I think that in the long run this will be a positive experience for us because we will have a much greater appreciation for just how delicate life is and what a gift our baby is. If we had a regular pregnancy I don't know that we would have as much an appreciation for that. However, to tell someone is basically being dragged through the emotional meat grinder (or veggie grinder for you vegans and such) and experiencing what is probably the hardest thing they have ever had to deal with that they aren't being positive enough, especially when you have really only interacted with them twice, is really overstepping the bounds.

The comments about not having it as rough as others in the nicu again just seem inappropriate. Yes, we know it could be worse. For someone like him who has worked in the nicu for 20 years, maybe we seem like cry babies worried about the smallest things for nothing. We haven't been here before, and we are going to be concerned for our child. If only the people who have it worst off have the right to be concerned, then I guess well need to take a poll in the nicu and see who has the crappiest situation and give them a special t-shirt or something. There have been times when the doctors have flat out told us that things don't look good. Maybe he felt we should reserve our concern for those times. However, we know things can turn on a dime. When his last pic line went bad, it was Kate who pointed it out to the nurse. We spend more time with him than anyone and so are most likely the ones who are going to pick up on subtle changes that might reflect bigger problems.

As far as trusting the staff goes, we certainly do appreciate them. So far we have only had one nurse who we did not like because we didn't feel she was competent. We had her on her last night working there so didn't raise any stink about it. Other than that we have been tremendously impressed with the staff. We have had two nurses a day for 8 weeks and can only really complain about one. It is remarkable to me that so many people can be so outstanding. That said, we don't blindly put our trust in medical staff anymore. We put our trust in Dr. Chen and his staff, Kate's OB, and if we had continued to trust them, both Henry and Kate would likely have ended up dead. Fool me once, shame on you, fool me twice, shame on me.

I believe Henry may have received some of his information from Nadine. I will have to admit that I was rather stressed the previous night when Henry was screaming in pain every three minutes for four straight hours and we couldn't figure out why. One reason was that I was exhausted. There were a couple nights this week where I didn't have more than 2-3 hours sleep and I wanted to get home and rest but we just couldn't leave him like that. Basically, when our baby is stressed, we are going to be stressed. I don't really see any remedy for that.

It is possible he was privy to information from a survey that Kate filled out about nicu satisfaction. It had a lot of open-ended questions. She was rather glowing about the staff but mentioned problems with the noise levels and the sanitary practices of visitors. I still think he does not understand us very well and grossly overstepped his role as a nurse by making these statements.

On a lighter note, some more pictures have been added to the previous posts so please scroll down and take a look.

All Nighter

Yesterday was a long day. He did fairly well through the day. However, after Kate held him in the evening we were not able to get him calmed down. He would lay passively with his eyes open for several minutes and then erupt into a crying, flailing fit. His heart rate was also elevated, running at around 170-180 when normal is 143. We tried moving positions, giving him a binky to suck on, changing his diaper, turning off the lights and closing the flaps on his isolette but nothing could make him happy. Typically he is a pretty calm and content baby.

He kept this up for several hours. Eventually his heart rate started to slow and he seemed less agitated. However, he still would not close his eyes. Typically we see his eyes open very infrequently. It seems that the last few days he is more frequently alert with eyes wide open looking around.

Kate and I both feel uncomfortable leaving him when he is not resting comfortably. So we were there with him until 4am. We called the nicu after we got home and his heart rate was in the 150's and his eyes were closed, finally.

We developed several theories as to why he was so on edge last night. Nadine thought he might be trying to force a bowel movement or might have gas. She pulled the contents of his stomach up a couple times and found a significant amount of air in it. However, that didn't seem to relieve him at all. To reinforce her theory he had a big bowel movement at 5am.

She also thought he could be over tired. She has seen babies that get over stimulated and then just can't shut themselves down. They fight sleep for a while before finally crashing.

My theory is that he does not like the potassium they are giving him. I had been holding him in the early afternoon. He and I were both asleep when I awoke to find the nurse Henry standing over the top of us because he needed to give Henry his potassium.

After that baby Henry was much more agitated. At one point he had a screaming fit and set off his heart rate and respiration alarms which is something he very rarely does. That was at 1pm. It eventually led me to put him back in his isolette. I don't recall if his heart rate was elevated but I do recall he was wide eyed even until I left around 3pm.

The fun in the evening started sometime around when Nadine gave him his potassium, 1am. I'm not sure of the timing but I think things coincided pretty closely. So it will be interesting to see if this theory plays out. If it does I don't know what the options are. He needs the potassium because the lasix drains it out of him. He needs the lasix because he doesn't urinate enough on his own yet.

The potassium theory is also bolstered by Kate's own experience with potassium supplements. At some point in grad school she found that taking potassium and magnesium supplements caused her to stay awake. I'm not sure how she discovered this but she did. A quick Google search on potassium and sleep turns up a lot of results. A quick perusal seems to suggest that potassium and sleep are related but generally seems to say that potassium helps sleep, not hinders it.

In other news, yesterday was a lasix day and it showed. He had a new personal best on his diaper, 69 grams. He lost weight, going back to 1010 grams (2lbs 3.5 oz). Henry was his nurse during the day and Nadine was his nurse at night. He is up to 6ml's per hour on his milk intake which is considered his goal at this point. He seems to be digesting it well. Hopefully he continues to do so. This is his third time to reach full feeds of milk and we don't want to see him taken off it again. He needs the calcium to help his bones grow, he is still rather under sized.

I ran into a family that had a nicu graduate with them yesterday. Their baby had been 25 weeks when he was born and weighted 750 grams. I believe his mom said he is now 4 months old. He was in the nicu for 11 weeks and went home without any monitors or oxygen. He looked great and the mom said he was free of any health issues. I'm certain Henry is not going to be going home at 11 weeks, he will be eight weeks tomorrow and still has yet to really take off growth wise. However, it was nice to see a living and breathing example of a nicu success story.

I will add some pictures later. Right now I need to head down to see what happens at his next dosage of potassium.

Diaper Overload

Today was another good day. Nancy was his nurse during the day. She has cared for Henry before. The exciting part of the day was in the morning when his diaper leaked and he made a big mess out of his bed. Grandpa Henry was pleased that this gave him a chance to hold Henry for a few minutes while Nancy changed the bed.

Nancy decided to put a bigger diaper on him to try to avoid the leakage situation. I'll try to get a picture of the different sized diapers. They are just so small. We moved him back down to the smaller size later because the others are far too big. That graduation will have to wait for another day.

Kate visited in the afternoon. She did kangaroo care for a couple of hours and Henry responded well.

Kate and I went in again in the evening. Lydia was his nurse for the night. She had not cared for Henry before. I did kangaroo care for a couple of hours. He was more restful that he had been the previous night and pretty much slept the whole time.

He is now up to 1110 grams (2lbs 7oz). That is a 70 gram increase from the previous night. Now we wait and see if he pees it all off tomorrow when he gets his lasix. He is also off the tpn which was the replacement/supplement for breast milk that he has been getting. Hopefully he will continue to digest the milk and won't need the tpn again.

Nadine stopped by to check up on Henry. She commented on how he's starting to get some cheeks and his color looks pretty good. Due to some internal politics with the scheduling she was not taking care of him tonight.

We had another visitor, Edna. She is a volunteer in the nicu who holds the babies and feeds them. They are known as the "cuddlers". She's been volunteering there for 8 years and comes every other Friday night. She also works at the U of A as a staff member in the College of Social and Behavioral Sciences which includes the communication department that Kate and Hank work in. She had even attended Hank's retirement party. She reassured us that Henry was in good hands.

Easy Going Thursday

Henry had a good day. He had slept through the morning. Lisa G. placed his blue beanie bear at the top of his head and his beanie tiger at his feet to cocoon him in his bed. I did skin-to-skin with Henry for a couple hours in the afternoon. He was a bit fussy at first. During skin-to-skin, Henry lays on his tummy, but he didn't like that today, so Lisa G. helped put him on his side. Overall, his sats looked very good. My mom stayed with Henry when I left around 4PM.

In the evening, Sue was Henry's nurse. We had seen Sue around the NICU, but this was the first time that she was assigned to Henry. She said that Henry weighed 1,040 grams tonight. He's down 10 grams from last night, but today was a Lasix day, so that isn't a huge surprise. It was a pretty quiet evening. Pod Four was very quiet, which was nice. Jeff did skin-to-skin with Henry for around two and a half hours. Henry did a little surfing, but he rebounded from it on his own, which is good.

When we left, Henry was getting 3.5 ml of milk per hour. It should increase to 4 ml per hour at midnight. Sue said the area around his PIC line looked fine, which is good.

Calmer Wednesday

Yesterday was much calmer than Tuesday. Melita was Henry's day nurse. He appeared fairly relaxed and sleepy. Melissa had turned his oxygen up a tad during the night. Melita turned it back down to 30%. Yesterday was a non-Lasix day. His output was normal for a baby his size, which is good.

Henry and I kangarooed for about two and a half hours during the day. Fr. Joe, the chaplain at UMC, gave us a visit. He visited me when I was in the hospital and told me that he's come up to the NICU a few times to say prayers for Henry. Fr. Joe used to teach at my high school. He was my teacher for two religion courses (morality during my sophomore year and world religions during my junior or senior year). Small world.

In the evening, Emily was Henry's nurse. She said that he weighed 1,050 grams. He did a little sat surfing while we were there. Jeff and Henry did skin-to-skin for well over two hours. Henry set off the alarms a couple of times because his sats dipped below the appropriate level. They ranged from 70% to 99%. He recovered quickly from his dips and, for the most part, had sat levels in the mid to high 90s. He enjoyed it when Jeff talked and hummed softly to him. When we put Henry back into his isolette, he was wide awake and looking very cute. We stayed until he drifted off to sleep.

My dad went for his usual morning visit with Henry. Lisa G. is Henry's nurse again today. My dad said that Henry looked great. I'm off to see him now.

PIC Line 7 or 8...But Who's Counting

Today was an uncomfortable day. I called the NICU this morning and talked with Lisa G., his primary who hasn't been around for a few weeks. They hadn't yet tried to put a PIC line into Henry. She mentioned that if they couldn't put in a PIC line, then they might have to consider surgery.

When I arrived in the NICU, a father was bringing a three year old into the NICU. They washed their hands for a total of 20 seconds. Then, another father, who I hadn't seen before, said to me "Wow. Do you really wash for the whole 3 minutes?" as I continued to wash my hands. I said that of course I did. I explained how CDC research states that you need to wash that long to get rid of the bacteria on your skin and how bacteria can kill babies. I mentioned that even if you don't touch your baby, you touch other items in the NICU that other people touch. So it was important for everyone to wash for the entire time. He seemed surprised at this information. I think that I got him to wash his hands longer.

When I arrived at Henry's bedside, the residents were still in rounds, so nothing had changed. Henry's respiration was very high. Lisa G. said that he was probably upset from his morning eye check. His eyes look fine for his gestation. No problems yet. Henry couldn't seem to get comfortable.

After they finished rounds, his resident doctor, Dr. Jeminah Van Handel, said that they would be increasing his feeds by .5 ml/hour with the increases taking place every twelve hours. So he's now at 1.5 ml per hour. If all goes well, that would make him at 6 ml per hour (his goal) by the end of the week. I forgot to mention that Jeminah left us cupcakes yesterday to celebrate his reaching 1,000 grams. Very nice of her.

NP Lisa McCoskey took a look at Henry to see if she could spot any potential veins for PIC lines. She found some candidates. NP Andrea Saugstad was the one who put in the PIC. She said he had good veins (at least for placing lines in him; the veins must be fragile b/c his PIC lines don't last long). By this time, it was around 2:30PM. Took a while to set up for the procedure. Lisa G. gave Henry some sucrose for the pain. On Andrea's first try, she went into a vein that had a good return (meaning the blood was flowing) but the line wouldn't thread up the canal. On her second try, she started further up that same vein (to by-pass the areas that it wouldn't thread) but the vein didn't give her a good return. Finally, she went to another vein that was large, but it was more complicated because it runs around the back of the arm. The vein had a good return, and she managed to get it threaded. An x-ray was taken, and its placement looked OK. Henry tolerated the procedure well.

Jeff arrived after his work, just in time for cares. Somehow, he managed to get my mom to help me change the diaper instead of him. The first diaper was 61 grams! Henry, as you can probably guess, had been given his 1 ml dose of Lasix a few hours earlier. Once the diaper had been changed, Henry made a mess of it within seconds. Grandma did the dirty work on diaper number two and changed it like a pro.

Henry's respiration was still very high. His chest was moving in and out rapidly. Lisa G. thought it was a combination of him having a busy day (eye exam and PIC line) and him needing to produce a stool to get the bowels working. I went home to get some household chores done while Jeff watched over Henry. He said that Henry's respiration went down to more appropriate levels. He decided not to kangaroo today, since Henry seemed worn out and needed quiet time.

I went back around 9PM. In the washroom, I saw a man that I had talked to earlier today about handwashing. I ascertained that he is the father of Henry's Pod One girlfriend, the 23.5-weeker. Despite there being 28 babies in the NICU today, it wasn't a difficult match to make. I'm guessing that about 75% of the last names are of Hispanic origin. The father is Asian-American, and Henry's girlfriend has the only Asian-American last name on the board. I still don't know the first name of Henry's girlfriend. Her father said that she is doing OK. She's been there two weeks and pulled out her ventillator tube (so she and Henry already have something in common).

Melissa J., his primary, was on duty. She had just finished with his cares when I got there. His diaper was 38 grams. It wasn't particularly surprising that his weight was down to 1,020 grams. She ended up taking out the peripheral IV that was in his foot because she wasn't able to flush it. Hopefully, the PIC line will continued to work.

I asked her if she could look at the records to see how many PIC lines Henry has had (the official count). There isn't a log of the PIC lines exactly, but she was able to see how many times he had had x-rays for PIC lines. There is one entry from a while back that reports an x-ray for PIC line in his left arm and then 45 minutes later reports another x-ray for a PIC line in his right arm. It's unclear whether that was really two PIC lines or whehter it was one that had to be taken twice based on a not great placement the first time around. I'd assume it was the same line. If you take that as the count, he has had 7 PIC lines, which is a lot. I pray that this recent one lasts. He's still too little for surgery.

Melissa asked me if I wanted to do kangaroo care tonight. I said that I would hold off since Henry had had a stressful day. She said that he'd been doing well and he likes the skin-to-skin. I still declined. Someone in Pod Three was screaming their head off. It was so loud. I'm glad that Henry's not in that pod. It sounded like mass chaos in there. Then, Nathan's father (Nathan is one of the babies in Pod Four; he's the baby with the amazing head of hair that was so long, his grandmother came and gave him a haircut) was loud. Kangaroo care is excellent when it is peaceful; but when it is loud, it stresses me and Henry out. In the end, I lowered the isolette and placed my hands on Henry's head and feet so he knew I was there. Henry's new corner of the world is much less hectic than other areas of the NICU. Hopefully, tomorrow will be a quiet day, and we'll resume skin-to-skin.

Another PIC Bites The Dust

After Jeff held Henry this afternoon, we headed out of the NICU during the 6:45-7:45PM shift change hour because they ask all visitors and parents to leave during that time. We grabbed some dinner and then Jeff dropped me off at the hospital. I had intended to leave by 11PM, but things tend to detain me. Tonight, it was Henry's PIC line.

Emily was Henry's nurse tonight. She's the primary for another baby, Julissa, in Pod Four, so Kathy ended up staying in Pod 2. Emily has taken care of Henry before. We have some lovely pictures of her with him. I started on Henry's cares shortly after I arrived. After taking his temperature, which is taken under the arm, I noticed that his right tricep/bicep area looked a little red. Not awful, but just different, so I asked her about it. She got one of the residents to take a look. He said that Henry's circulation looked fine. He tested it by squeezing Henry's hand, which turned it white, but then the color returned. He suggested, however, having the nurse practitioner take a look. Tonight, Carrie was the NP on duty, but she was doing some other things in the rather busy NICU, so I went ahead and did skin-to-skin with Henry for about two and a half hours. We put Henry back into his isolette around 11PM. The skin-to-skin went very well. He had one brady where I had to lighty stimulate his arm to get him to start his heart back up (as usual, I think he just got a little too relaxed while kangarooing).

Carrie took a look at Henry's arm. She agreed that it didn't look right. Henry was pretty unhappy with her when she felt around his arm. So, long story short, the PIC line needs to be removed and another one put in. PIC line number 5 has bit the dust. She said that it will be replaced in the morning. In the meantime, he has been taken off the TPN and put on a dextrose solution. That was frustrating because Dr. Wispe said today that Henry needs nutrition more than anything else. Although the TPN isn't great, it is better than sugar water. The TPN made for Henry can't be used through a peripheral IV because it has some nutrients that can't be given through it (e.g., calcium).

Emily and Michelle put a peripheral IV into Henry. Michelle asked me if it was OK to put in a scalp IV. I said that I wasn't thrilled by it, but that she should choose whichever location she thought best. She had spotted a nice "juicy" vein on the left side of his head. She tried putting it in but the vein went kaput. So, they ended up putting the IV into his left foot.

As I left around 12:30AM, I saw Nadine talking with Michelle. Nadine stopped by because she had been visiting one of the teenages that she counsels who had just delivered a baby. Nadine works part-time in the NICU and part-time for a pregnancy program for teenagers. I gave her the Henry update. Michelle was surprised when I said that the PIC line was number 5, meaning that by tomorrow, he'll be on line number 6. That's a heck of a lot of PIC lines. The PIC line procedure is a sensitive one. Everytime they put in a PIC line, there is greater potential for infections. When the put in the PIC lines, they wear masks and gloves and use sterile sheets during the procedure. And, everytime they do a PIC line, they have to x-ray him to make sure that the line isn't too close to the heart, but just close enough. X-rays, of course, mean radiation, which they like to minimize as much as possible.

Let's hope that PIC line number 6 is his last. And that the feeds take this time, so that no PIC line is needed.

Henry's Hideout

The big news of today is that Henry moved. He was in the second pod near the window. However, the sink there broke, and the repair was going to possibly involve ripping it out of the wall. They were going to keep Henry near the work but his grandpa Hank stepped in. I don't know if he turned on the charm (a wink and a smile from the "Silver Fox"), or resorted to his mastery of political communication before which a person with a mere bachelor's degree was powerless to refuse, or if he just slipped them a twenty, but he convinced the nurses to move him to the fourth pod to avoid the noise of the repairs.

He now has the best seat in the house. The fourth pod only holds four babies at the most. It is the farthest from the front desk where nurses and doctors gather to chat. It is the quietest place he could be and also has more room than his old spot. The screen saver for the computer at his station has been changed to "Henry's Hideout" instead of "Henry's House." It seems appropriate for the nice secluded location he now has.

Hopefully he will be able to stay there. They are trying to work out the nurses schedule to make that possible because they need to have the right number of nurses in the right location. Moving babies from pod to pod also requires shifting nurses around. They have been responsive to our requests in the past and I think they will accommodate us on this one as well.

In other news, Henry now weighs 1050 grams (2lbs 3 oz). They are starting him on breast milk again. He is getting 1 ml every hour in a continous feed. We've been told for several days that they would probably let his gut rest a while after he was off the antibiotics. So sure enough they started the feeds the day after he finished his antibiotics. This time I don't think Kate and I were suprised by the rush to put him back on breast milk. It seems that frequently we are told one thing and then another happens. So we start his third attempt to go on breast milk. Hopefully, the third time is the charm.

We were able to talk to Dr. Wispe this afternoon. He is the head of the unit and is taking over Henry's case in Dr. Cahan's absence. He is eager to get Henry on the breast milk because he needs the calcium. The diuretic lasix tends to take calcium away from the body. That is why he is now on it once every other day rather than every day. They tried another diuretic called diurel (sp?) but he said that it made his sodium level drop too low. So they will be watching him closely for signs of feeding intolerance and nec. They will be proceeding slowing but they are moving forwarding with the breast milk.

I was able to hold Henry for a little under two hours today. He seems to be coming close to sucking his thumb. He gets the knuckle in and sort of chews on it. He was very calm most of the time and his vitals were very good. Kate is going to hold him tonight.

Mary was his nurse during the day. She has been great the last couple of days making sure that the one recliner is available when we want to use it. We don't mind other people using it, but if they aren't going to recline then there are plenty of other chairs.

Today was his 7 week birthday. He could also be considered a 32 week old or a negative 8 week old. One more week and he will be as old as Kate was when she was born.

I'm continually suprised at the will he shows. I think that if I went from the nice warm comfy paradise of the womb where I spent most of the day sleeping and had all my needs taken care of to a place where I was continually poked, proded, injected, manhandled, xrayed, intubated, suctioned, wiped, taped and untaped, and had to do things like breath, digest and have my diaper changed I might just say, no thanks, this isn't what I signed up for. Just ask Kate, I'm an intolerable grump if I get disturbed during a nap. He just seems to take it in stride with only the occasional furrowed brow.

Thanks to all of you out there hoping and praying for him. You have helped him make it this far. There is a long way to go but he continues to give every indication that he has the spirit to make it. That spirit is being nurtured by all the positive thoughts from all the people connected to him through various channels. You don't realize how many people you have in your corner until something like this, and we are thankful for it.

Quiet Late Night

Jeff and I celebrated Father's Day at my parents' house tonight. Jeff received neat gifts. My sisters Carolyn and Erin and their significant others Chris and Brian framed a picture of Jeff holding Henry in a frame with Happy First Father's Day engraved on it. My parents got Jeff a digital picture frame. Both will look great on his desk.

We brought our dogs, Marley and Roger, over to my parents' house to give them a treat. Prior to Henry's arrival, we took the dogs on a lot of car rides (Marley loves our Honda Element). Both Marley and Roger are pound pups. We got them about 16 months ago. We still give them lots of love, but they and our cats (Princess, Jackson, and Bits) aren't getting the same level of attention lately. It's been a rather abrupt change for them. All in all, they are handling things well. A couple weeks ago, one of the nurses suggested that we bring in swatches of fabric to leave in Henry's isolette to get his smell on them. Then, she suggested bringing the swatches home so that our animals can get used to Henry's smell. Hopefully, this will make the transition a bit easier for them.

I headed over to the hospital around 10:30PM. Jeff had talked to Kathy before I left. When I got to the hospital, Henry was swaddled and looked content. I did his cares shortly after 11PM. He wasn't due for cares until midnight, but I wanted to hold him, so we did them early. I continued to be way off on my guesstimates of his diaper weight. I guessed 4 grams. I can't remember what it was exactly, but it was in the teens (17 grams, I think). The Lasix sure did its work this time. He shouldn't be getting a dose tomorrow, so I would suspect that the diapers will be much lower in weight. His shape is looking better. He no longer has the double chin that he had yesterday. And, his leg looks good. It was nice seeing his face without his scalp IV party hat. I was able to put my hand on the top of his head.

After cares, I did almost two hours of skin-to-skin with Henry. It took a little while to get him settled. He was having a bit of trouble getting into a comfortable position. He had a few bradys, but they didn't last long , and he got himself out of them without stimulation on my end. I doubt they'd be classified as true bradys because they were very short. I fell asleep a few times, until his alarms woke me up from the quasi-bradys. All in all, it was a relatively quiet night in the NICU. Overall, the alarms weren't going off much for the other babies either (or I'm just getting so used to them, I no longer hear them). It was a nice crew in Henry's pod tonight. The other nurses were Lisa, Jenny, and Marcie (all of whom have taken care of Henry at some point). They occasionally chatted, but the volume level was low, which was excellent.

Kathy asked me when the last time Henry had a bath was. I told her that I wasn't aware that he'd ever had a bath (aside from a sponge bath). I suspect that a bath is in Henry's near future. I can't imagine how that's done with all of the various wires that he's hooked to.

In other news, I noticed that a few babies have been switched from red status to green status on the board. That's nice to see. One of the nurses stopped by Henry's isolette last week to say that she'd found Henry a girlfriend, a 23.5-weeker who was born at 570 grams just like Henry. I was never told the little girl's name but I think that the nurse who stopped by was the baby's primary. If I'm right, then Henry's girlfriend has been moved from purple to red. I think that red is considered slightly better than purple, so that is good news. And the little girl across from Henry's isolette was changed from red to green the other day, which is also good news.

A Good Father's Day

Henry had a pretty uneventful day. Mary was his nurse in the morning and Kathy is on tonight. He was put on the diuretic again and had 47 gram and 50 gram diapers right afterward. Those were records for him. A normal diaper weighs somewhere around 5 -15 grams. The next one was 14 grams, so it looks like the flood is over. He was beginning to look rather puffy, so it is good that he shed some of that extra fluid. His weight came down a little bit to 1010 grams (2lbs 2 oz) tonight. Kate and I both thought it would have come down farther than that, so we are happy.

He had the last dose of his antibiotics. I expect that some time this week he will be started up on milk again. Kate and I are fine with them waiting a little while before doing this. It seems they have a tendancy to rush things. The doctors have a meeting in the morning on Monday to lay out a plan for the week so we should know more then.

His scalp iv is was taken out this evening. That is a bit of a relief. It was rather scary trying to move or hold him knowing there was a needle stuck in his head. Now he will be able to wear his cute little hats again.

This morning they flushed his stomach with saline. They had checked his stomach and found some fluid early. They put 3 mls of saline down his stomach and sucked it right back out and repeated that 3 times. They got some mucous out on the first flush and then just saline after that. I think that is a good sign, don't want anything too interesting to be discovered.

I visited in the early afternoon and Kate stopped by later in the afternoon. I was able to hold him for about an hour and a half. He was fairly active but content. He wakes up and looks around. We try to keep a beanie baby in view so he has something to look at. He didn't have any serious apnea or brady spells today. He occassionally set the alarm off for a second or two but nothing to be concerned about.

For father's day the NICU employees made up shirts for all the fathers. They have the baby name above a set of the babies foot prints and NICU 2007 below. It was very thoughtful and much appreciated.

From Pale to Pink

Jeff visited Henry yesterday afternoon (6/16). Joyce was still on duty. Henry's blood gases looked good, especially his CO2, which looked almost normal, but his hematocrit levels were low again, so he received yet another blood transfusion. Grandma and Aunt Carolyn visited Henry. Aunt Carolyn brought him a present--an orange tiger beanie baby named Sandals. Henry stared at his new friend Sandals.

In the evening, Jeff and I arrived while Kathy was still on duty. She had given him part two of his blood transfusion. They give the blood transfusions in pieces, so as not to overwhelm the babies' systems. The blood transfusions make Henry's color very pink. He continued to look puffy, especially around the neck. His left leg was still a little larger than his right side, but at least the redness around the thigh was beginning to fade compared to yesterday's color. Kathy weighed him at 1,040 grams.

Jeff and I changed his diaper. My new hobby is trying to guess how much it weighs before the nurse weighs it. Jeff guessed 9 grams, I guessed 4 grams, and Holly guessed 3 grams. Jeff won. It was 7 grams. That's good because he hadn't had any Lasix yesterday, and 7 grams is about where it should be.

Holly checked his heart and bowel sounds. Everything sounded good. She also checked for aspirates in the tummy. She got about 1 cc of green tinged clear stuff out of it.

The recliner was taken by one of the nurses into the isolation room. I really wish that people wouldn't take the recliner unless they actually need to recline in it. There are plenty of other chairs that don't recline that one could sit in. There's only one recliner in the NICU. We need the recliner for skin-to-skin because we need Henry to be at an angle. I was told by one of the nurses that the upright position wasn't good for his lungs yet. It would put too much strain on them. Moreover, when we do skin-to-skin, I like doing it for a long time (e.g., over an hour and a half); the reclined position makes this possible. I really feel like the skin-to-skin is medically beneficial to Henry. His sats tend to stabilize when he does it. Holly negotiated a trade with the nurse in the isolation chamber. She gave them a different chair in exchange for the recliner plus putting in an IV into the baby in the isolation chamber. Holly is great. She got the recliner and wiped it down with a disinfectant wipe for us. I kangarooed with Henry for over two hours. Holly noted that Henry had been the only baby in the room who didn't have alarms going off...further evidence, albeit anecdotal, that the skin-to-skin is medically beneficial. It was really late by this point. We left around 3:15AM.

I called the NICU this morning. Mary is taking care of Henry today. He continued to have some dark aspirates, so she is going to flush out his stomach with some saline, which should hopefully get rid of whatever is irritating his stomach. Jeff has headed down to the NICU for his Father's Day visit.

Kilo Reached

The NICU noise was quite high last night. I arrived around 9:30PM. They put a full-term baby right next to Henry. The baby was there for observation. The baby made loud sounds, kind of like wind whistling through the trees foreshadowing a big storm. The nurse attending the baby was really loud. She said in a loud voice, "Keep it up. Scream to get those lungs working." The nurse was far louder than the baby. While waiting for the baby to do something, she talked with one of the other nurses about dog collars (she shops at Petsmarts). I was getting frustrated because Henry started fussing. His sats were OK, but the sound clearly bothered him. Henry's podmate across from him was bothered by the noise too. She started crying when the nurse got loud. I finally said something to Kathy. I asked if she knew if the baby was going to be in the pod for a long time because Henry and Bryanna had been moved to the end of the pod to stay away from loud noises; putting a loud baby next to them didn't make a whole lot of sense to me. And there were other slots available on the other side of the pod where they could have admitted the full-term baby (and his noisy nurse). Kathy talked with the nurse and got the "Well, this is where they decided to put him" response. At least her inquiry seemed to quiet the noisy nurse down.

It is frustrating. I know that there are times when the NICU is going to be noisy. Alarms go off. That can't be helped, because they serve an important purpose. Emergencies happen. But why, why, why do people have to talk in loud voices about trivia. I'm all for camaraderie. These personal discussions, however, could easily take place in quiet voices.

Kathy had put Henry on his tummy before I arrived. He had the blankets around him, so I initially couldn't see him well. I didn't want to disturb him when he was sleeping. When he started kicking his sheets off, I peaked into his isolette. He turned himself onto his side but was constrained by the tube from his PIC line. I reached into his isolette to give him a little more slack so he could move his arm around. He ended up rolling onto his back. I was impressed that he can already turn from tummy to back (at minus eight weeks old).

Holly did the shift change with Kathy around 11PM or so. Henry looked awake around 11:40PM, so Holly and I started on his cares. Jeff arrived around midnight. He'd been doing work all day. The noise had subsided by this time, so Jeff was able to do skin-to-skin with Henry. Holly helped us get into position for kangaroo care. And then Jeff kangarooed with Henry for about an hour. Before putting him back, Holly changed Henry's linens. She put some of his new blankets and sheets in his isolette (the new linens that his Grandma and Grandpa dropped off earlier in the day). Henry was alert when he was put back in his isolette. He was weighed twice and found to be 1,000 grams both times. The 1 kilogram mark has been reached! I suspect that some of it is fluid retention. By this time, Jeff and I were absolutely wiped out, but Henry's eyes were wide-open. He was very into his pacifier, which seems to relax him.

When I woke up this morning, I called the NICU to check on Henry. Joyce is taking care of him today. This is her last day before she goes on vacation. I assume that means that Holly will be assigned to Henry tonight. Then she is going on vacation as well. Joyce said that Henry was sleeping. She said that he's looking a little puffy. This is probably because Dr. Wispe dropped his Lasix dosage down to every other day. On the one hand, Lasix helps get rid of extra fluids. On the other hand, one doesn't want Henry to become diuretic dependent. Henry had his last dose yesterday morning. Hopefully, his kidneys will kick into high gear on their own.

Henry's New Party Hat

When I arrived this morning, Joyce asked me if I had seen Henry's new party hat. I peaked into his isolette to find that he had a cup on top of his head with tape holding it in place. It was his new IV. The PIC line (peripherally inserted central catheter) that had been in his left leg went bad. Apparently, Nadine noticed something wrong with the leg last night. It was getting swollen. By the time Joyce arrived on the morning shift, the staff decided that it needed to be pulled out. So Joyce had the fun task of putting an IV in his scalp. As you enter the NICU, there is a board on scalp IVs that says they look scary but are no different than regular IVs, except for the location of course. It does look scary, but it doesn't go into his brain. It resides in a vein between the skin and the skull.

His leg continued to look swollen throughout the day. And it was red around his inner thigh. The bad PIC line might explain why Henry wasn't releasing urine like he should have been yesterday. So, his Lasix doses have now been reduced to every other day. He had no problems peeing today. I changed two 25 gram diapers, which is pretty good for his size.

My parents stopped by right before Henry and I did our kangaroo care. They brought him a cute Snoopy suitcase filled with blankets.

Henry and I spent around two hours doing skin-to-skin. His sats were good. He did cry a few times. Joyce said that he was probably hungry and could smell the milk on me. Even though his bowels are looking good (yesterday was his last planned intestinal x-ray), they won't start feeds for another few days.

Dr. Jeminah Van Handel, the resident handling Henry's case for June, reported that his head ultrasound was clear, which is good news.

After skin-to-skin, Joyce helped me put Henry back in the isolette. My mom came back to the NICU right after skin-to-skin. Henry was quite alert during his afternoon cares. My mom keeps saying that Henry can recognize me. I haven't always been sure that she's right. But today, I think that he was focusing on me and looked pretty happy.

Then, Mary Ann came by to put in the new PIC line. The scalp IV is a standard peripheral line. Unfortunately, there are some nutrients (e.g., calcium) that shouldn't or can't be put in the peripheral line. So a new PIC line was necessary. Mary Ann asked me if I wanted to help hold him down while she did the procedure. She also asked me if I was able to tolerate the sight of blood and Henry being poked as she didn't want me to faint in the middle of it. I'm not squimish, and I watched Carrie do the last PIC line without problems. So, I helped out.

Mary Ann gets a kick out of Henry since he's so feisty. She was the nurse practitioner on duty the night that Henry pulled out his entire PIC line from his right arm. Henry is rather memorable. Today's PIC line is PIC line number 5. However, he hasn't yet broken the record, which is 8. I'm hoping that this is one record that he doesn't try to break. Nevertheless, Mary Ann says that he has made the infamous list of NICU babies and PIC lines.

Joyce gave Henry some sucrose before the procedure. Sucrose acts as a pain inhibitor in babies. The PIC line was placed in his right arm. It took Mary Ann a few tries to find a vein that would allow her to thread the tubing up to his heart. Basically, the procedure involves inserting tubing through a needle that looks much like a regular IV needle. Once inserted, the tubing has to be slowly pushed into the vein where it travels up close to the heart. This takes a while because sometimes the tubing doesn't go with the flow. It has to be pulled out if it hits the wrong spots. Henry was calm throughout the entire procedure. Then, an x-ray was taken to make sure that the PIC line was in place. Mary Ann said it was nearly perfect but decided to pull the line back 1 cm just to make sure that it wasn't too close to the heart. This involved removing the dressing and getting the sterile equipment back out. Henry started to get a little fussy at this point, but all in all, he handled the event incredibly well.

TPN, Mmm, Mmmm Good

Another good day today. Henry is now down to one xray per day. It will probably be a few more days before they start giving him milk again. However, he seems to be doing well on the mixture they give him which is called TPN. He gained 40 grams and weighed in at 950 grams tonight. Hopefully it is not all fluid. He is not urinating quite as much as they would like despite being given the diuretic. He doesn't appear bloated like he did before when he gained a lot of weight and then lost it all. He still doesn't really have any fat on him. I have some I'd be willing to donate.

His nurse was Jenn for a little bit this morning and then Penny took over for the rest of the morning shift. Penny is the developmental specialist and pays particular attention to things like atmosphere and positioning. She has lent us some books on preemies and kangaroo care that were interesting to read. She also has done things like prepared a booklet for Henry that describes his situation and has some pictures. I believe she was behind a framed picture of Henry that Kate received for Mother's Day. I didn't realize she actually took shifts caring for the babies until today.

Kate was able to do kangaroo care for two hours this afternoon during which he did very well. His oxygen has been turned down to 28% and he continues to maintain his saturation well which is encouraging. They also turned down the rate of flow of the oxygen from 1.5 to 1 liters. This will give his lungs less support so he will have to do more work on his own.

He had a visit from his aunt Erin again today. I should also mention that Kate's father visits him every morning and her mother visits every afternoon. It is nice to have him so watched over.

His xray was good, no bubbles. He received an ultrasound of his head again today but we didn't find out the results yet.

Nadine was back taking care of Henry tonight. She is one of our favorites and seems to genuinely enjoy taking care of Henry. It is also nice to have consistency in his care so that they know things like what his color normally is or how often he has apnea/brady episodes.

I held him for about an hour and a half this evening. He did well, pretty uneventful which is good.

After he was put back in his isolette, there was some dark substance that came up his feeding tube. It wasn't very much but Nadine showed it to the doctor just in case. They didn't see a cause for concern as long as it doesn't continue. It might be blood from agitation to the nasal cavity by the feeding tube, bloody nose. They humidify the air that goes up his nose but it can still dry out the insides. Something to keep an eye on.

Overall he had a restful day. We just need about 75 more days like today and we'll be able to take him home.

Wimpy White Boy Syndrome

Henry continues to do well. Tonight we had Melissa as his nurse. He weighed in at 910 grams again. This seemed a little suspect because the first time she weighed him he was 880 grams. The second time, 10 seconds after the first, he was 910. Seems like a pretty large discrepency. She chose to use 910. I think I'll wait one more night and if he is still over 907 for the third night in a row I'll consider him truly at 2 lbs.

His oxygen remained at 28% which is much improved over a couple days ago. He seems much more active. I believe that not being fed makes him agitated. He used to get agitated just before getting fed when he was on a once every 3 hours schedule. When he started the continuous feeds he really seemed pretty calm all the time. Now he is off the food again and seems much more active and ornery. Just my pet theory.

I was able to hold him tonight. He did well for a while. He was a little cold to start but they put him on my chest and covered him in heated blankets and he warmed right up. After about an hour he became fussy and started to cry. It's sad to hear him cry but it is also reassuring. We heard him cry when he was first born. Then he had a tube down his throat for a couple weeks and he couldn't make a sound. After the tube was removed he still couldn't manage to make any noise. He would sometime open his mouth and you could tell he was trying but nothing came out. Now he can wail pretty good when he wants to. It feels like he is making progress to have him do something now that he couldn't do a couple weeks ago, even if it is a sign of displeasure.

Dr. Ryan (not sure if that is his first or last name) stopped by to explain the xray results from this afternoon. He said that there was basically no change from the morning. However, he said that in the morning the air bubbles were gone. Dr. Cahan had not mentioned that which seemed a little odd since that seems like big news to us. Apparently he still has loopy bowels which I believe means there is a lot of air in them. However, I think they have been like that for a while. Kate and I recall the nurse practitioner Mary Ann commenting on how she could press on them and feel the air moving back and forth. The air bubbles that were the big concern were the ones in the lining of the intestines, not inside the intestines. So we don't know for sure but the worst part of this NEC episode seems to have passed. They will keep him on the antibiotics for several more days and won't start feeding again for a while.

It is hard to get a handle on what NEC is. It seems to me that it is any bowel problem that they can't explain. Dr. Ryan said it can be viral, bacterial or fungal. The bubbles in the lining of the intestine are symptoms of it but are not NEC itself. Dr. Cahan says that NEC research is large field and recieves billions of dollars in funding but they are still basically clueless about what causes it.

Kate was subjecting the doctor to her usual barrage of questions and managed to hit on a topic we hadn't heard before. Henry falls into the category of "Wimpy White Boy Syndrome." Basically, of all the race/sex combinations white males fare the worst in the preemie world and are most at risk for things like NEC. Females do better and black females do much better. So it seems the dominance of white males in positions of power and influence in the world throughout recorded history may be a simple overcompensation for certain inadequacies early in life. So it is not just lack of rhythm or inability to dunk a basketball that drives us, it actually starts in the womb. Wonderful.

I'm going to add a couple pictures to some recent posts so scroll down to check them out. And if you are concerned about the time stamp of this post, I took a three hour nap this afternoon.

Replogle Tube Be Gone!

When I came into the NICU shortly after noon, Joyce told me that Henry was feeling better today. Henry took out his replogle tube and nose prongs from his cannula out this morning. He's back to his fiesty self. The replogle tube is a large tube put down the throat that sucks air and goop out of the stomach. It was put down his throat when they stopped feeds because they didn't want any more food or air to enter his intestinal track. He couldn't close his mouth fully with this tube down his throat.

Luckily, Joyce was given the OK to remove the replogle tube, so Henry is more comfortable now. Also, Henry's oxygen level was down to 28%. This was good news because yesterday, I believe it was as high as 70%. Room air is 21%.

Joyce let me know that the surgeons stopped by this morning. His stomach felt nice and soft. Hopefully, we'll avoid surgery. Henry was supposed to have a head ultrasound yesterday, so Joyce checked on that.

Joyce and I changed his diaper. He managed to get his bed wet. Unfortunately, his diapers don't fit that well. So out with the old bedding, in with the new.

Henry and I did around two and a half hours of kangaroo care. Dr. Cahan stopped by while I was holding Henry. The morning x-ray looked slightly better than before. There are still some problems in the intestines, but Henry is moving in the right direction. She still wants Henry to have his brain checked via ultrasound. She really doesn't think that there is much to get excited about, but they want to keep track of it...just in case. She has put Henry back on Lasix. He wasn't urinating enough without it. I have been concerned about Lasix because it is known to cause kidney stones. She is less worried about that than the effects of Lasix taking calcium from the system which should be going to bone development. If all goes well, she'll eventually get him off the Lasix and back to the diuryl (sp?). I thanked her for answering my barrage of questions yesterday. She said it was no problem. Jeff refers to me as The Polish Inquisition, due to my constant stream of questions.

Dr. Cahan is going out of the country next week to India. She'll be there for two weeks. So we'll have a new set of doctors starting Friday. Holly told me yesterday that both she and Joyce will be going on vacation soon too. I happy for them, but rather disappointed for us because Henry had a great team going during this scary NEC incident.

When Joyce left at 3PM, Kathy Coin (a different Kathy from the nurse who often takes care of him) was his nurse for two hours. My mom showed up right before we put him back to bed. Kathy helped me get Henry back into his isolette after the kangaroo session. She put him in his isolette on his tummy. He likes that best. I learned how to change his diaper while he was on his stomach. It's quite a bit more difficult than when he's on his back.

Around 5PM, Cindy became his nurse. Cindy has had Henry before. I believe that she was his nurse a couple of times during the first two weeks of his NICU stay. She's been a nurse for 27 years. At one point, someone at the far end of the pod turned on the bright fluorescent lights, which may have irritated Henry's eyes because he looked upset. Luckily, one of the nurses on our end told them to turn down the lights right away. At one point, Henry was howling. I don't know what made him mad. Cindy managed to calm him down quickly by massaging his left temple.

That's all to report for now.

Heavy Henry

Holly was Henry's nurse tonight. I arrived just in time for his cares. She helped me change his diaper because he has so many wires and tubes running all over the place. His diaper weighed 25 grams. Carrie, the nurse practitioner, had put him on Lasix this afternoon and ordered 20 mls of saline for him because they were concerned that he wasn't releasing enough fluids. Looked like the Lasix was having the desired effect. Henry looked pretty unhappy during cares but he kept his sats high. Holly weighed him after the diaper change, and he weighed 910 grams! That means that he is now just over 2 lbs (907 grams = 2 lbs). Some of it may be fluid, but it appears that he is moving in the right direction. He was 880 grams last night.

I asked Holly about the results of the afternoon x-rays. Nothing has changed.

Other than that, it was an uneventful evening, which is good. I like it when Henry has uneventful evenings.

Holly was very nice as always. A couple days ago, my dad had mentioned to her our dissatifaction last week with nurse Kim. My dad often sees Holly in the morning as she is getting off her shift. Holly was appalled by Kim's story about the small preemies she took care of (the girl lived and the boy, who happened to be named Henry, died). She let Jeff and I know the other night that if we have problems with any of the nurses, we can talk with the charge nurse. We told her that we knew Kim was leaving, so we didn't see the point of lodging any complaints. And, we have been impressed with the nursing staff in the NICU. Henry has had so many different nurses over the past six weeks. The fact that we have only been unhappy with one is amazing. Long story short, Holly will be going on vacation next week. But she gave me her home telephone number and said to call her if we have any problems or have questions. She's going to be on duty Friday and Saturday, so hopefully, Henry will get her then.

Slightly Better Than Yesterday

Last night, Kathy and Holly were Henry's nurses. Kathy took over after Joyce left. Jeff and I went home for a couple hours. In the evening, my dad visited Henry. Henry had a few As & Bs.

Jeff and I returned to the NICU around 11PM when Kathy and Holly were doing their shift change. Holly had to draw a lot of blood from him for various tests. He tolerated the blood draws well.

One of the nurses set up a new isolette for Henry. The isolettes get changed ever two weeks for sanitation purposes. His new isolette has a sports theme. His last one had a purple blanket with purses on it. I didn't even notice the pattern until Sarah, one of his previous nurses who stops by to visit him, pointed it out. The nurses generally like to stick to traditional sex theme match ups (e.g., boys wear blue, girls wear pink). And it is kind of funny to see a baby boy dressed in pink flowers. I imagine the traditional colors help keep the babies' sexes straight when the nurses are referring to their various patients. It is easy to slip and call a he a she. The sports theme is very cute. Looks great. Jeff and I helped Holly move Henry to his new isolette. He had some desats after the move.

After a while, Henry seemed to be OK. But then again, he hasn't displayed the usual symptoms of NEC. We left around 3:15AM, once Henry seemed comfortable.

Virginia was Henry's nurse today. My dad visited Henry this morning. He was there when Dr. Cahan came by to check Henry's stomach. It looked a little better than yesterday, but she can still feel the intestinal loop that's distended.

Dr. O'Connor, the surgeon, inspected Henry this morning. She's hoping that he will not need surgery.

Jeff and I returned in the early afternoon. I noticed that on the board, Henry's status had been changed from blue to green. I also noticed that Joyce, Kathy, and Holly have signed up as associates for Henry. That means that if the primaries aren't there, then they would get him. We are very happy about having Joyce, Kathy, and Holly as his caregivers.

My mom stopped by around 2PM. Henry's Aunt Erin and Uncle Brian visited around 3PM.

I talked with Dr. Cahan. She said that the x-rays taken in the morning looked slightly better, but basically there wasn't a whole lot of improvement. She didn't expect that there would be. Getting rid of the bubbles takes time. Consequently, Henry will be off the breast milk feeds for 7-10 days and will continue to get antibiotics.

Later in the afternoon, Henry had his afternoon x-rays. He is having x-rays taken of his belly twice a day until the bubbles in the intestinal lining go away.

Jeff and I left around 4:45PM. My mom decided to stay and look after him for a while. We'll be heading back there after the evening shift change ends at 7:45PM.