Letting a Sleeping Henry Lie

Today was a good day. Henry's sats looked good, and he was so restful compared to yesterday. It was a relief. Since he looked like he was getting some sleep, Jeff and I didn't reach into his isolette to touch him, except during his cares.

Gene was his day nurse. It was the first time that Gene has been his nurse. He did an excellent job making Henry comfortable. He suctioned out Henry's nose and got a lot of stuff out of it. Perhaps that's why Henry was fussing yesterday and desating. The CPAP nose prongs don't exactly work well when the nose is clogged up. Once suctioned out, his saturation levels went up, and Gene was able to turn down the oxygen.

I can't believe how many nurses it takes to run the NICU. And, the nurses are of such high quality and experience. Gene has been working at University Medical Center's NICU for seven years. Prior to that, he worked at a NICU in Phoenix for seven years. And prior to that, he was a fire fighter. He has five kids, ages 3 to 14 years old.

I talked with Lisa, the nurse practitioner. Henry had another chest x-ray. She said that there was some improvement over the one taken on 5/29. She said that Henry was doing very well. She said that he had progressed quickly on his respiration and was pleased that he wasn't intubated as many preemies his weight often are.

Dr. Wispe stopped by and said that he thought that Henry was doing OK. Because of the x-ray taken on 5/29, which suggested some fluid in the lungs, and because Henry wasn't doing well yesterday (oxygen levels were turned up), Dr. Wispe ordered lasix, a diuretic, for him. On the one hand, it could be the case that the low saturations levels and hence increased need for oxygen were caused by his nose, which Gene mentioned as a possibility to Dr. Wispe. On the other hand, his diaper output hasn't been impressive overall (other than the day he was given a small dose of lasix and then produced at 41 gram diaper).

Nadine was back as Henry's evening nurse. I came just in time to change a 29 gram diaper (the lasix worked!). I then helped weigh him. The isolette has a scale feature. (1) The nurse tells the isolette that s/he wants to weigh the baby. (2) The computer screen says to pick up the baby. (3) While holdig the baby, the computer calibrates the bed to 0 grams. (4) The computer then says to put the baby down. (5) Once down, the baby's weight is calculated. I "helped" by holding Henry up while the computer calibrated the bed. We actually took his weight a couple of times because I messed up the first reading by holding "blow by" equipment after I put him down (which had been on the bed during the calibration). The first reading said 940 grams, which was way too big of an increase. The second reading was 860 grams. The third reading (Nadine did the holding on this one) was 850 grams. Since Henry was tolerating us well, we decided to do a fourth reading (again Nadine did the holding). It was 850 grams, so we decided that this was his weight for the evening.

Holding Henry during the weighing was a good experience. I'm feeling a little more comfortable holding him in general. But his head and neck still makes me a little nervous.

Nadine checked his stomach. It looked slightly distended. Nadine felt it, and it was soft (which is good). Before feeding, she checked his feeding tube. No residuals were in his stomach (yea!). Henry's feedings are being held at 14 ml per 3 hours.

When I left around 10PM, Henry's saturation levels were great (95%), the oxygen level on the CPAP was in the 30s, and his respiration (breaths per minute) was lower than I'd seen it in a while (looked good).

Waking Up on the Wrong Side of the Isolette

Henry was a bit fussy tonight. His nurse tonight was Melissa (a different Melissa than before; this Melissa has brown hair). She said that Henry weighed 870 grams.

Melissa was struggling with Henry's CPAP when we arrived. His saturations were a little low, setting off the alarm. Adjustments to his tubing didn't seem to help that much. Any improvements only lasted a few seconds. As usual, he had been trying to take his nose prongs out, so Melissa used Frosty the Bull (the beanie baby) to keep Henry's hands away from his face.

I did skin-to-skin tonight. The CPAP was problematic. It took several minutes to get Henry into my arms with the CPAP working. His saturations at one point dropped to the 50s. Once we got situated, Henry was great. Minimal fuss. One brady in my arms (he was too relaxed). His eyes looked alert, and he enjoyed staring at Jeff. He did spit up on me (first time) and managed to make a good mess with a relatively small amount of output. And, he pulled out his feeding tube again (but this time he worked the tube out with his tongue rather than using his hands).

Jeff and I did the 11PM cares. He had prepared a 22 gram diaper for us. I don't know if we mentioned before that they weigh the diapers after each diaper change to let them know about his digestive progress so to speak.

His feeding tonight was up to 14ml. He should reach his feeding goal of 16ml tomorrow. They stopped the TPN completely. After the feeding, I placed my left hand on his head and let him hold my index finger on my right hand (so that he wouldn't go after his nose prongs again). His stats looked very good.

Dr. Erin McLain was on duty tonight. Sadly, tomorrow is her last day in the NICU. She is a third year resident. She was only assigned to the NICU for May. As of June 1, she'll be on the third floor of the hospital. Then, in July, she moves to Pinetop, AZ to join a pediatric clinic. I'm sad to see her leave. She's been excellent throughout this ordeal in keeping us informed about Henry's progress and telling us about the logic behind various decisions that the doctors make. I ask a lot of questions, and she gives me the answers. She has an excellent personality...very kind and warm. And, informative and kind are exactly the characteristics one wants in a doctor.

"Henry is huge!"

One of Henry's nurses from his first or second week in the NICU, Joyce, said to me today that "Henry is huge!" He is after all almost at the 2 lbs mark! Joyce hasn't had Henry in a while because she has been taking care of the triplets that are in Henry's pod (very quiet triplets). Nice to know that Joyce is occasionally looking in on him; she has been in the NICU for thirty six years and has a great touch with the babies.

Janice was Henry's day nurse. When I arrived, she was trying to soothe him. Apparently, he kept desating every time she left him. And, he was crying a bit. He has a very small cry. His grandpa heard it for the first time yesterday.

Janice had tried positioning Henry in several different ways, but he wasn't a happy camper today. He had an eye exam this morning. Things look fine. Just as they should for his age. Preemies sometimes have problems with their eyes, such as retinal detachment. So, he'll be getting regular eye checks as he progresses.

I placed my hands on him for a while. He kept squirming and managed to roll over onto his face. His stats continued to look good as the oxygen mask did its job, but I asked Janice to reposition him.

He had a small brady/apnea episode but got out of it himself.

I talked with Dr. McLain. She said that he is doing "fantastic" for his age/weight. She said that a lot of preemies in his general group are still intubated at this point. So they happy that he's continued to do well on the CPAP.

Feeds are being increased by 1 ml every six hours. The goal continues to be 16 ml of breast milk every three hours. At that point, they can take him off the TPN (which means he wouldn't need the PIC line). The TPN is the liquid nutrients and sugar that are placed into his veins. As I have mentioned before, the feeds have to be monitored closely until we hit his projected arrival date (August 11) because necrotizing enterocolitis is still a possible problem.

Word has gotten around that Henry pulled his PIC line out. I'm glad that the doctors and nurses are amused by this. I was more amused by the feeding tube pulls than last night's PIC line episode. Over the past few weeks, Henry has been described by various NICU staff members as "feisty," "sassy," "a fighter," and "purposive." David, the respiratory technician, told me a few weeks ago that Henry was a fighter and that those types of babies tend to do better than the ones that are passive. My dad has said that he's never seen such spirit in anything so small. So I am hoping that Henry continues to be willful, except of course when it comes to listening to his mother.

Look Ma, No Tubes!

Another good day today. He is up to 860 grams. He is breathing well and seemed to sleep a lot. His nurse this afternoon, Lisa G, thought he was sleeping so soundly that she put off changing his diaper for a while to let him snooze. His feeds are up to 10mls, and he's tolerating them so far. His bowels are moving, rather impressively at times. (I may never look at pesto the same way again). His color is good, and his belly is soft.

Kate and I did his cares at 11pm with the help of nurse Melissa. Kate is working up the courage to rotate him. His little neck is so fragile that it is a little frightening. It still requires the two of us. We're getting better, but it's not easy with so many wires to contend with and velcro diaper tabs that stick to everything.

Exciting news is that he got his first stuffed animal today. It is a Frosty the Bull beanie baby. It is only about 6 inches long but fits well in his isolet with him. We chose the bull for a couple reasons. First, he is a Taurus. Second, Kate has a bull from when she was a little girl. Its name is Basco and was the mascot for the old Tucson Toros minor league baseball team. He wears a bit of a scowl and a frown which reminded Kate's father of her when he tried to wake her up in the morning. Henry has a similar scowl that we see quite frequently as he is poked and prodded.

Today was also rather amusing in that he pulled out his feeding tube not once, not twice but three times. He also pulled out his pic line. The feeding tube is rather simple to reinsert. The pic line is a bit more of a concern as it goes through a vein either in his leg or arm and feeds right up next to his heart. Fortunately they were able to put a new pic line in his leg without a problem. The old one had been in his arm for a couple weeks and the tape holding it down had become loose due to sweat.

It might seem kind of silly but I feel proud of our clever little boy. I never imagined myself as one of those parents who go on about their baby and how they are so advanced for their age but I'm getting there. I'll be able to say things like, "My boy is so far ahead he got to skip his third trimester." He's getting a reputation for being rather stubborn and feisty. The nurses know that if he is doing ok, it is best not to mess with him. I can foresee years of Kate and I pointing fingers and saying "No, he gets that from you."

There are no major procedures on the horizon. For now the amount of milk he is getting will continue to increase for another couple days. I imagine they might try the nasal canulla again before the end of the week, but they haven't said anything yet. We'll know they are going to do it when all the nurses and doctors start to tell us how they aren't going to do it for a while. That is how it has worked the last two times.

Here's hoping for another good day tomorrow.

Back to CPAP

A nurse that Henry hadn't had before was his nurse last night. Her name was Lisa. Henry's saturation levels were down, and Lisa had to turn up the oxygen on the cannula to 80%. When we got to the NICU a little after 9:30PM, she was tracking down one of the doctors. While she was looking for one of the doctors, another nurse turned up his oxygen to 85%, because the alarm on his saturation monitor was going off (it goes off when the saturation levels dip below 82%). Even when his sats looked OK after the oxygen increase, you could tell from looking at his chest that he was working way too hard. Further evidence was shown on the monitor; his respiration level measured in breaths per minute was high. The resident, Marsha, observed him for a little while. Then, it was decided to move his back to the CPAP. He had done pretty well with the cannula all in all...managed to stay on it 10 hours, which is about 6 hours longer than last time.

He was moved to a new isolette. They change the babies' isolettes every two weeks, so that the isolettes can be cleaned. With all of the wires and tubes, it took two nurses and a respiratory techician to move Henry from one isolette to the other. He was, of course, unhappy about being disturbed. During the transition, Jeff and I had a good opportunity to look at his color, which was much better than I had previously thought. That was a relief.

His weight held steady at 840 grams.

Jeff and I did his cares around 11:15PM. Lisa found about 2ml of residuals in his stomach. They looked OK (nothing strange, just slightly digested), so she went ahead and increased his breast milk intake to 8ml. Hopefully, he'll continue to take it without problems. Last time, we made it to 7ml and then he developed an intolerance for it. So we are waiting with bated breath, hoping that he continues to handle it this time.

Monday Surprise

Jeff and I had a surprise when we visited Henry today. They decided to put him on the cannula. Lisa, his day nurse, was surprised as well. He did well on it, in terms of saturation levels. But the number of breaths that he is taking is a little higher than usual. Lisa said that they might not keep him on it for long, but it will give him a little break from the CPAP hat that squishes his head and the CPAP face mask that often squishes his nose.

We plan to get some more information about how medical decisions are made in the NICU. We really hope that the cannula works, but we are also concerned that he is going to get stressed out. Since they are increasing his feeds by 1ml every 12 hours, I am just concerned that they are asking him to do too much at once. And the nurse practitioner's explanation for keeping Henry on the CPAP last night made sense to me.

So far, he is taking the feeds well. I just called the NICU about 45 minutes ago and talked to Lisa. She said that he only had 1ml residual in his stomach at the 5PM feeding and the residual's color was fine.

I am a little concerned about Henry's color. He continues to look a little less pink than he did a few days ago. I'm going to check out his color again tonight and if it looks strange, I'll ask a doctor about it.

A Happy Sunday

Yesterday (5/27) was a good day. Henry was in his new spot at the end of the pod near the window. While it isn’t perfectly quiet, it is much better than being at the other end of the pod. Janice was Henry’s day nurse and reported that he weighed 810 grams. He wasn’t doing as much sat surfing, which is great. Jeff and I helped with cares (taking his temperature, changing his diaper, and helping with his feeding) at 2PM. Jeff managed to flip Henry from his side to his back (usually the nurse does this) to prepare him for cares. I was impressed because this has to be done delicately and one has to deal with a lot of wires and tube. After cares and feeding, I placed my hands on Henry. I had my right hand on the top of his head, and he held my left index finger in his hand for a long while and became very relaxed. I touched his forehead a couple of times when I thought he was getting a little too relaxed (respiration slipping into the teens) because I didn’t want him to have an apnea episode or brady.

We talked with Dr. McLain. Nothing new to report. We’re just hoping that he’ll continue to take the breast milk and continue to grow. I asked Dr. McLain how much of a back slide going from the cannula back to the CPAP was. She didn’t think that it was really a back slide because they tried the cannula without any expectation that it was going to work.

When we came in the evening, the staff was taking chest x-rays of Henry. The nurse practitioner (Mary Ann Roberts) said that she just wanted to take the x-rays to have a baseline, since they hadn’t taken x-rays of his chest in awhile. Also, the CPAP tends to be a bit noisy, so it is sometimes difficult to hear exactly what is going on in the lungs. Mary Ann said that for his age and size, she was impressed that he has been on the CPAP instead of the ventilator. She did not think that they should push him on moving to the cannula because she said that he does not yet have the muscle in the diaphragm to support the lungs quite yet. Once he gets a little bigger, his body will be more prepared to handle providing the pressure instead of needing the CPAP. She also explained that whereas adults and full-term babies have a solid skeletal frame to support the lungs, at Henry’s stage of development, the skeletal frame is still a bit soft (the density of the bones is more like cartilage than hard bone). Jeff and I took a look at the x-rays. The lungs are still underdeveloped, but at least the lung area on the x-rays were not completely white, like they were during week two. We could see a slight grayness on some of the areas of the x-ray, suggesting that there is some lung there.

Melissa was Henry’s evening nurse. He weighed 840 grams. His head circumference was little bigger since the previous week, but Melissa thought that it was probably because nurses may measure from slightly different areas of the head. The increase was small. So no hydrocephalus worries. Jeff and I again handled cares at 11PM. Jeff turned Henry from his stomach to his back. I was again impressed with Jeff’s ability to turn Henry over.

After cares, Jeff did some kangaroo care (skin-to-skin contact) with Henry. Melissa gave us the choice of doing the CPAP or a “blow by” for his oxygen. She said that he’d done well with his blow by on his previous cares. A “blow by” is used when they are changing his CPAP masks from face mask to nose prongs or the reverse. Basically, it is a bag that blows oxygen past the face (100% oxygen), but it doesn’t provide the pressure. They also do the blows for short periods of time just to give the baby’s face some rest. They often massage the face a little bit (since having a mask or prongs can be a bit irritating) during the blow by. We decided to do the blow by. Henry was placed on Jeff’s chest, positioned so that he could hear Jeff’s heart beat, and he looked really, really happy. His facial expressions were very positive. His eye brows were up, and he occasionally would open his eyes to stare at his daddy. After a half an hour, Melissa came back to put on Henry’s CPAP. Henry’s saturation levels were excellent, but Mary Ann told Melissa that she did not want Henry to do the blow by for long periods of time (based on the same logic as explained above regarding the cannula). Henry was quite mad when Melissa put the CPAP back on him in the isolette. He turned purple to show his anger. When we left, his stats (heart rate, respiration, and saturation levels) were good. So all in all, yesterday was a good day.

Not All Water Weight

Nadine was Henry's nurse last night. She's not going to be on duty again until Wednesday, which is disappointing because he does so well in her care.

Nadine weighed Henry at 810 grams, so his weight increase doesn't appear to be all water weight. She thought his color looked good. I think that she was a little disappointed that his breathing isn't quite as good as when she had him last weekend. It may be the case that the steroids are wearing off.

She said that Henry was pretty mad at her during his cares at 8PM. But at least he was alert. And, he held her finger with his hand. Jeff and I did some of the cares at 11PM. We took his temperature and changed his diaper. Although the nurses are adept at changing diapers, it feels like a two person job when Jeff and I do it because there are some many chords (e.g., the leads to his heart and breathing monitors, his PIC line). I suctioned out his mouth and lightly massaged his nose while the mask to the CPAP was off. He only frowned at me once and kept his sat levels up during cares. In addition, his body language was good (didn't suggest stress). Jeff did the feeding tonight. Henry is now up to 4 ml of breast milk. The plan is to up the ml's to a unit increase every 12 hours as long as he continues to tolerate it.

For the most part, the pod was relatively quiet. The noisy neighbors to the right of his isolette have gone home. But unfortunately, the staff decided to put a gargantuan baby right across from Henry. The nurses weighed this kid at over 9lbs. While baby didn't scream all of the time we were there, but when it did scream, it wailed. Nadine was trying to get Henry moved toward the very back of the pod, in the far left corner. Sarah earlier today was also trying to make this happen. Henry's pod holds 10 babies, 5 slots on the right and 5 on the left. He's been stationed in stall 11 during our entire time there, which is the second slot on the right as you enter the pod. I'm hoping that it will be better for him when he's no longer in the middle of the room.

The baby that was in stall 15 (the far left corner) was moved to first stall on the left. As soon as one of the cleaning staff has a chance to clean the far left corner, Henry will most likely be moved. The baby that was moved is quite a cutie. He is fascinating to look at because he has the thickest, longest hair that I have ever seen on a newborn. Even the nurses were impressed. Looks like he's about 3 lbs with black hair that is over an inch long that sticks straight up on top. In any event, I hope he thrives in his new location, just as I hope Henry thrives in his. The new location should give Henry a little more protection from the noise in the pod. Jeff is a little concerned because the nurses tend to congregate at the back of the pod when they are gabbing. But I figure that we are there so often, they'll probably find another place to do their gabbing.

Quiet Please!

Today Henry is doing well. He has gained a significant amount of weight and is up to 830 grams. However, much of that may be water. He was started on a diurectic today and had a very soggy diaper afterwards. His day nurse Sarah thought it was impressive. Overall he didn't look too puffy except for one hand. The hand that has his pic line looked like Popeye post spinach. They cut a slit in the bandage that was going around his arm holding in the pic line so it wouldn't go completely around the arm and elevated the arm. A call to the NICU a few minutes ago told us that the swelling has gone down greatly after that.

The NICU was fairly quiet today and he seemed to be pretty comfortable. He had a couple spells of not breathing accompanied by a drop in the heart rate. As Kate has said before, these are common. One was right after being given his milk for the afternoon feeding (up to 3ml's). The nurse commented that after feeding these spells are particularly common because the baby is very warm inside and out and becomes very relaxed.

Yesterday was a bit rough. He generally seemed unhappy most of the time and the noise level in the NICU was fairly high. His heart rate and oxygen levels were going up and down, known as surfing. Both Kate and I had the frustrating experience of trying to calm him with our touch and having him stop breathing. Nothing better for the old self confidence than feeling that if you touch your baby you might kill him. I figure he will grow up to have big keep out signs on his room and padlocks locks like a NY apartment.

To add to the frustration of feeling helpless to comfort our boy is the continued battle to keep the NICU quiet. We've posted a picture of him on his isolet with a balloon coming out of mouth saying "Quiet Please!". We talk to every nurse we have to express our concern about noise levels. We give the occassional concerned look toward the current offenders. Hopefully it will make a difference. We're going to be there a while, maybe we will have them all trained by the time we leave.

A Calm Day

Henry was relatively calm today. He slept for most of the time I was there. Janice turned up the oxygen, so Henry did a little less sat surfing than yesterday. His weight is at 780 grams. His blood sugar levels looked good. They have stopped doing the daily blood gases because the last several tests looked good. They'll probably take them twice a week rather than daily, which will give his little heel a rest.

The day shift nurses were still rather noisy at times (talking about movies). One of them was giving directions to his house to someone on the telephone. But at least no one was singing "Isn't She Lovely?" like one nurse was doing the night before last.

There was a bit of a commotion in the area right of Henry's isolette again, but it was the staff taking ultrasounds of the baby's heart. The family that was so noisy last night was actually pretty quiet this morning. It sounded to me like the baby is going to go home tomorrow. The nurse was asking the mother if she had watched the videos that all parents must watch before discharge. So, hopefully, the pod will be a little more quiet tomorrow.

Ruckus in the Pod

Last night, Henry was doing OK. His saturation levels were all over the place again. Jenny (again his evening nurse) turned him on his tummy, which seemed to stabilize his saturation levels a bit.

The noise level of the NICU was high. I was pretty upset over it. The people in the area to the left of Henry's isolette were very noisy. Given the size of the baby next to Henry, she should be in another pod. Henry's pod originally had the real little ones in it (i.e., the micropreemies). As babies grow, they get louder. And "Johnnay," the baby next to Henry, is no micropreemie and screams a lot. In addition, Johnnay's family is quite loud. One of the nurses screened off their area to give them privacy, but they talked so loudly that you could hear everything they said. And tonight, they were having an argument about whether the mother should give the father a haircut (mind you, this guy's hair is as short as Jeff's). We did talk to one of the nurses to see if they could move Johnnay to a more appropriate pod (e.g., where there are babies her size who make similar amounts of noise). The problem is that the NICU is almost at capacity right now.

To add to the problem, the nurses at the end of the pod started gabbing about vacation spots or something, and they were loud. These are people who should know better. The literature that the staff have handed us states over and over the importance of peace and quiet for preemies, since they can't handle and shouldn't have to handle the auditory stimulation.

Here is what the literature says...

"Within the womb, noise is filtered and muffled by muscle, fluid, and bone. Outside the womb, your premie's ears enjoy none of that protection. The noise level in the intensive care nursery is 10 to 22 decibels louder than that in the newborn nursery, ranging around 60 to 70 decibels at all times. (Normal speech is at 65 decibels.) At 70 decibels, sleep disturbances may begin to occur. If the sound level exceeds 84 decibels repeatedly over time, your child can experience a hearing loss from the sound's cumulative effects.

The din in the NICU has a wide variety of sources. The infant is assailed by the incessant beeping of other babies' monitor alarms, the excited voices of parents visiting neighboring incubators, the jangle of the phones, the grating of the addressograph, and the rattle of trash cans.

These sounds are quite loud. For example, the sound of shutting incubator portholes runs from 111 to 124 decibels. Setting a milk bottle down softly on top of an incubator measures from 84 to 100 decibels, closing the cabinet doors under the incubator from 104 to 119 decibels. The ambient noise level has been measured at between 50 to 68 decibels inside incubators even when the portholes are closed. When open, it's 60 to 68 decibels.

With this continuous racket, it should be no surprise that a number of babies suffer from hearing impairment when they leave the neonatal intensive care unit. To be certain that hearing loss is detected, most babies are given a hearing test before discharge. Most hearing loss is temporary." (Ludington-Hoe & Golant, 1993, pp. 42-43)

I have repeatedly told the nurses that his saturation levels go down when the room is noisy. But a few of them don't seem to make the connection. Also, when a nurse is taking care of an older baby, s/he tends to talk at a level appropriate for that baby, failing to realize that there are smaller babies (that s/he isn't taking care of that day) who shouldn't have to handle that level of noise.

I feel like I need to keep watch 24-7 to monitor the noise level around his isolette, which is difficult. I'm there a lot, but realistically, I can't be there at all times.


REFERENCE
Ludington-Hoe, S. M., & Golant, S. K. (1993). Kangaroo care: The best you can do to help your preterm infant. New York: Bantam.

Mantras of the NICU

There are a few things that the NICU staff have told us over and over again...since the very first night that he was brought into the NICU.

(1) No news is good news. If things are OK, then we won't be contacted.
(2) NICU life is like a rollercoaster. There will be good days and bad days. If you google the word "preemie," you'll come across a lot of websites that use the rollercoaster metaphor.
(3) Preemie progress isn't linear. It's two steps forward, one step back. To look at a baby's progress, one should look at things from week to week, not day to day.

The "two steps forward, one step back" phrase is one of the staff's favorites.

From a parental perspective, the one step back days are still really difficult to deal with. Even the bradys, which are very common among preemies, are hard to deal with, even though they are "normal" for preemies.

All in all, I know that Henry is doing better than he was this time last week. Around this time last week, his stomach was gray, and they didn't know what was causing it. Today, his color is a little pale, but they were giving him a blood transfusion (he hadn't had one since 5/9), so that should help his color out. But in any event, slightly pale is much better than gray. Around this time last week, he weighed around 620 grams. Today, his weight is 740 grams...which is better than 620 grams. He doesn't look swollen, so it looks like the weight gain is real.

Dr. Wispe mentioned that he may reject the breast milk again. It could take several trials before his digestive system is ready. After all, if he had stayed in the womb, he'd be 28 weeks today...not expected to digest breast milk for another 3 months. So, we are asking a lot of his system to digest it now. Hopefully, he'll take it. But one step back on breast milk is quite probable.

Sat Surfing

While Jeff and I visited Henry last night (5/23), he spent a good deal of the time surfing on his saturation levels. It's rather frustrating to watch because he had been pretty stable on them over the weekend. Jenny was his evening nurse. We asked her to put him on his tummy (the position he likes best), since he'd been on his back every time we'd seen him over the last few days. She put him on his stomach on a special foam pillow. He, of course, managed to kick his leg out and roll himself over on his side. It didn't look like a particularly comfortable position, but his stats were pretty good, so we let him be.

Janice was his daytime nurse again (5/24). She told my dad (who visits Henry each morning) that Henry weighed 740 grams.

My mom visited Henry around noon. I came a little after 12:30PM. Henry continued to sat surf while I was there. He had some residuals in his stomach, so Janice didn't give him his 11AM breast milk. He had a little bit in his stomach at 2PM, but they decided to go ahead and give him his 2PM 1ml of milk.

I talked a little bit with Dr. Jonathan Wispe. Nothing really new to report. The two big concerns are: (1) keeping his respiration going, and (2) getting the feeds going while avoiding the necrotizing enterocolitis.

Janice said that his blood gases looked good. And, it looks like Henry's blood sugars have stabilized, which is great. According to Dr. McLain, that means that they'll be able to add some sugars to Henry's TPN, which will help him continue to gain weight.

Hanging Out, Having A Few Bradys

Henry looked pretty content this morning. I placed my hand in his isolette and let him grab my finger. He has a strong grip. He held my finger for quite a few minutes.

His saturation levels fluctuated quite a bit, and he had a few bradys while I was with him. My hands were already on him during one, so I tickled his foot to get him out of it. I'm not sure that it was necessary. Most of the time, he gets out of them himself. Janice, his nurse today, said that he had one earlier today that required her to stimulate him out of it.

His weight was 720 grams again today. And his blood gases looked good. His blood sugar was something like 109, which is great. That's a couple sugar tests in a row that have been in the normal range.

He did have an aspirate in his stomach earlier today, meaning that there were some residuals in his stomach. Lisa, not the Lisa who was his nurse yesterday but Lisa the nurse practitioner (NP), said that the residuals were a clear color not the bad green kind (suggesting bile going in the wrong direction). So, they've decided to increase his feedings to 1ml every 3 hours, hoping that they just need to push more breast milk through his system rather than letting it hang out for long periods of time. They'll probably go a little more slowly than last time in increasing the volume of breast milk given. Lisa reiterated that they may go back and forth for a couple times with him on the breast milk. They want him on the breast milk because it has a lot of nutrients that will help him grow. On the other hand, they can't push him too hard because then he might develop necrotizing enterocolitis (an infection that destroys the digestive system; also called NEC). About 5% of preemies get NEC.

All in all, it sounds like they are pleased with his breathing. He stayed on the nasal cannula for a couple hours last night. Lisa said that they'll try him on it again in a few days. And he'll probably go back and forth on it and the CPAP for awhile. But again, he's doing well for his size.

"Henry's the Man"

Tonight, Jeff and I received a surprise as we entered the NICU around 8:30PM. Henry was moved off of the CPAP onto a nasal cannula. The CPAP provides some pressure when deliverying the oxygen, whereas the nasal cannula provides the oxygen without pressure. The CPAP requires a tight seal around the face mask or nose mask (they switch back and forth between face mask and nose mask). The nasal cannula simply uses nose prongs without a seal. Basically, the advantages and disadvantages of the devices are as follows:

CPAP
Advantage: Requires less energy to breathe
Disadvantage: The device is rather cumbersome and requires a hat to secure the tubing of the device; the masks are uncomfortable (Henry frequently tries to remove the device from his face)

Nasal cannula
Advantage: No hat required; more comfortable around face
Disadvantage: Requires more energy to breathe, since the baby has to take in the oxygen, which was previously provided with some pressure from the CPAP

Belen was Henry's night nurse again. She said that they decided to move him onto the nasal cannula right around shift change (between 6:45 and 7:45). His weight remained at 720 grams.

One of Henry's former nurses, Melissa, walked by and was surprised to see Henry on the nasal cannula. I don't think that they normally put babies as small as Henry on the nasal cannula but he was doing so well on the CPAP that they thought he was ready. Melissa said, "Wow. Henry's the Man!"

Henry looked a lot more comfortable on the nasal cannula. It was nice to see his handsome face, which the CPAP tends to obscure. They did leave the CPAP near his isolette...just in case he needed it again

Henry did have a few bradys while we were there. Brady is short for bradycardia, which means that a baby's heart beat has dipped below 100 beats per minute. Bradys and apnea (where the baby stops breathing) often happen in preemies because their bodies sometimes forget that they are no longer in the womb and their mothers are no longer doing the breathing for them. So up until around 34 weeks gestation, bradys and apnea are quite common. The baby's heart beat will slow down or he'll stop breathing, the alarms will go off on his machine, and the nurse has to come over and revive the baby through stimulation (e.g., stroking his back or feet). Henry has had the occasional brady in the past, but most of the time, he brings himself out of it.

I called the NICU around 1:45AM. Belen said that they decide to put Henry back on the CPAP. He'd had a few more spells, and his oxygen saturation levels went down into the 70s (they try to keep them in the 88% to 92% range). But she thinks that they are going to try to alternate between the CPAP and nasal cannula (4 hours of one and then 4 hours of the other).

In other news, Belen said that he's digesting the breast milk so far. No residuals yet, which is very good news.

A Relatively Restful Few Days

On Friday (5/18), Kate went to visit Henry in the morning, the first visit since having stomach flu. Henry was doing OK, but the Dr. Erin McLain mentioned that they were quite worried over Henry's stomach. His stomach had developed a gray tinge to it (which is bad), but the stomach wasn't hard (which is good). The nurse and doctor went to show Kate what they were talking about, but as they looked at it, both remarked that it looked a lot better since the previous observation. They had started giving Henry antibiotics, so perhaps that helped whatever was going on. The other concern was that a genetic screen had come back suggesting that Henry may have a thyroid problem.

On Saturday (5/19), Henry's color looked better. He had a good day. Dr. McLain said that they retested his thyroid, and the readings were still lower than normal, but they don't think that it is causing him problems at this time. The low readings may simply have to do with his early birth, and hopefully, his thyroid will develop further. Nadine (his nurse on the night shift) weighed him, and it appears that his weight increased to 640 grams (up from 620 grams). She weighed him a couple times to be sure.

On Sunday (5/20), Henry had another good day. Nancy was his day nurse, and she thought he looked better than he had on Friday. Nancy took his head measurements, and things looked good. The circumference of Henry's head had increased just a little bit, which is fine. A large increase would suggest hydrocephalus, water on the brain, which would be bad. So, we were very pleased that his head size isn't increasing beyond what is normal. Nadine (again on evening shift) weighed him at 670 grams. We did the skin-to-skin holding in the evening. Kate did the holding this time. It went pretty well, although he seemed to get a little cold (despite the fact that we had warmed blankets on him).

On Monday (5/21), Henry had another good day. Today was his 3-week birthday! Dr. McLain said that they were going to start him on breast milk on Tuesday. They wanted to give him another day of rest. Lisa was Henry's day nurse. Belen was his evening nurse. She weighed Henry at 720 grams (she did it twice, just to make sure). Henry was a bit fussy while Jeff and Kate visited him. His oxygen saturation levels dropped ("de-sat"ing) a couple of times...scarying his parents. Belen ended up tucking a blanket around him, which seemed to calm him down immensely.

On Tuesday (5/22), Henry was pretty calm in the morning. Lisa explained that they've decided not to push the oxygen levels too much (meaning turning his oxygen down). They could, but then he'd have to work harder, and the doctors and nurses don't want him expending his energy on that right now. He still needs to gain weight, so they don't want him to use what little energy reserves he has on breathing off the CPAP. The nurse did give him breast milk (1ml, which they will be giving him every six hours).

Henry's Story

This blog has been created to give our family and friends updates on the status of our newborn, Henry Joseph. Henry was born on April 30, 2007. He was scheduled to arrive on August 11, making him a 25 weeker (born 570 grams). Basically, if all goes well, Henry will remain in neonatal intensive care unit (NICU) for what would have been the rest of his gestation in the womb (15 weeks).

WHY SUCH AN EARLY ARRIVAL?
Well, Kate began having vision problems on Sunday, 4/22. On Monday, 4/23, she called her doctor's office. After several hours, a nurse returned her call. When Kate explained that she was having vision problems, the nurse said, "Well, then you should call an eye doctor." Kate said that if hormones or something related to the pregnancy were causing the blurry vision, then visiting an eye doctor would not help. The nurse said, "Is the baby moving normally?" Kate explained that she had not felt the baby move during the pregnancy (something that she mentioned to her doctor at the previous visit, but he seemed unconcerned about it). Kate did get to see the doctor the next day (Tuesday, 4/24). At that visit, the nurse took Kate's blood pressure and said it was 120/80. The doctor listened to the baby's heart beat, and it sounded fine. So, he said told her to drink lots of water and come back the following Monday. During that week, Kate's blurry vision continued a few times. She took her blood pressure at two grocery stores, and it was rather high (in the 150s over 100s range). She was also rather swollen that week. Kate and Jeff bought a hand pump blood pressure device, and Kate's blood pressure continued to be high. They also used an automatic blood pressure reader that also showed that her blood pressure was high.

On Monday, 4/30, Kate and Jeff again went to the doctor's office. Again, when the nurse took Kate's blood pressure, she claimed it was 120/80. Kate was concerned because the nurse talked while taking the reading, and Jeff noticed that the nurse released the air gauge on the blood pressure device rather quickly. When the doctor came into the office, he asked how Kate was doing. She said she still had the blurry vision on occasion and was swollen. Jeff said that the nurse's reading of the blood pressure was dramatically different from the other four devices that Kate and Jeff had used to measure her blood pressure. The doctor then looked at the urine lab results and became concerned. He told them to take Kate to the triage unit at the women's center at Northwest Hospital. He said that Kate could have pre-eclampsia (meaning pre-seizure). Pre-eclampsia usually doesn't appear until week 30 or so, if at all. And, bed rest is used to hopefully bring down the blood pressure. The only cure for pre-eclampsia is delivery.

Kate and Jeff went to the triage unit where they confirmed that Kate's blood pressure was very high. A doctor was brought in to do a sonogram. Kate's doctor also came over to the triage unit. The two doctors conferred with each other and decided that Kate needed to be taken to another hospital where they had a Level 3 nursery, in case the baby had to be delivered right away.

Kate was taken by helicopter to University Medical Center. It was hoped that she'd stay there awhile before delivery became necessary. After two more sonograms, the doctors at UMC decided that a c-section was needed right away. They noticed some dips in the baby's heart beat. Kate was rushed into surgery. She was given a spinal anesthetic. A sheet was placed right below her chest so that she couldn't see what was going on. Jeff was brought into the surgery room to sit near Kate. And, at 6:45PM, they heard Henry Joseph's first cry. Henry was rushed out of the room. Jeff went along with him to NICU. It took a little while to sew Kate back up. She was then taken to recovery. After a few hours, Kate was eventually taken to the NICU to see Henry for the first time.

Henry was placed on a high frequency oscillator. This is a machine that provides oxygen to the baby. It does all of the breathing for him. In addition to tubes down the throat, the machine makes the baby shake, so babies tend not to like it very much. Imagine going from a dark, relatively quiet, calm environment (womb) to one that is noisy and bumpy (warming table in NICU).

THE FIRST WEEK
The first week is a bit of a blur. Kate was released from the hospital on Friday, 5/4. Leaving the hospital without Henry wasn't easy. Henry stayed on the high frequency oscillator. The doctors detected a PDA on the second day (PDA stands for Patent Ductus Arteriosis). A PDA is a small blood vessel in the lungs that is supposed to close after birth. Henry's PDA didn't close, so they had to give him some medication to make it close. It did, which was good, because he otherwise would have had surgery to close it.

His blood sugar levels weren't steady that week (they continue to be unstable). And, he was under phototheraphy for a good part of the week, because of a high bilirubins in his blood stream. He had a few blood transfusions that week as well. The nurses and doctors had problems getting into his veins, but they were able to get a PIC line into him (necessary for giving him nutrients and fluids). They were unable to get an arterial line in him, which meant that they have to prick his foot every few hours to do blood tests. Finally, he had edema (swelling due to excessive fluid retention) for about seven days. He went from 570 grams to 900 grams at one point, but it was all fluid retention.

On Sunday, 5/6, Henry was moved from the high frequency oscillator to a more conventional ventilator (Servo Ventilator 300). This ventilator is different because it doesn't do all of the breathing for the baby. The nurses set how many breaths per minute will be assisted by the machine.

THE SECOND WEEK
Monday, 5/7 was a great day. Both Kate and Jeff got a chance to change Henry's diaper. They are really, really small diapers...and they are rather big on Henry. The nurses tried giving Henry 1ml of breast milk, but he wasn't ready for it.

Tuesday, 5/8 was a strange day. Henry had had a rough night. He had lost a lot of his excessive fluid (which was good) and looked like a different baby. But it was a lot to lose at once.

Wednesday, 5/9 was a really rough day. They were again unsuccessful getting an arterial line in him. Henry's lungs were not doing well. They had to up his oxygen levels to 100%. Basically, on these machine, you consider how much oxygen is being provided (those of us not on ventilators breath air with 21% oxygen...the goal). But you also look at the baby's saturations levels (how well they are breathing a given % of oxygen). It was determined that Henry had chronic lung disease. So that he could breath, they had to give him steroids. There is a potential negative side effect of steroids, some neural damage. But the study showing this was based on long term steroid use in preemies.

Henry had a good Thursday, 5/10.

On Friday, 5/11, the nurses tried giving Henry breast milk again. The breast milk is given in a tube to the stomach as babies do not developed sucking and swallowing reactions until around 34 weeks of gestation. 1ml was given. And he did really well with it. And they continued to up the ml every fourth feeding.

On Saturday, 5/12, they moved Henry from the conventional ventilator to the CPAP (continuous positive airway pressure) machine. This meant that they removed the tubes going down his throat and that he was breathing on his own (but the machine provides the oxygen...at levels above the 21% we breath). He continued to eat well.

On Sunday, 5/13 (Mother's Day), Kate got to hold Henry in her arms for the first time. That was exciting. Henry continued to do well on CPAP and continued to eat well (up to 3ml of breast milk every 3 hours). The one bad thing was that something went wrong with his PIC line, so it had to be removed.

THE THIRD WEEK
On Monday, 5/14, they had problems putting in another PIC line. They finally got one in later in the day. Henry did have a "brady." His heart rate dipped, and the nurse had to touch his feet to remind him that he needed to breath. He was moved from his table bed to an isolette in the afternoon, which is nice because it is much less noisy in the isolette. In the evening, Jeff got a chance to hold him skin-to-skin (also called kangaroo care). Henry looked like he was enjoying it. But he didn't enjoy the move from Jeff's arms back to the isolette. He got very worked up. He gets worked up quite a bit when he gets touched too much (e.g., when the nurses have to take his blood). He shows his discontent in several ways: (a) he furrows his brow, (b) he wiggles his arms and tries to pull out his feeding tubes or tries to take his oxygen mask off, and/or (c) he gives a silent cry. The nurses say he's feisty. Now, feisty can be a good thing (because the kid is clearly a fighter). But taking his oxygen mask off and pull out his feeding tube (both of which have happened several times) are hardly good things. Also, when he moves around too much, he burns calories (and he unfortunately doesn't have weight right now to spare).

On Tuesday, 5/15, Kate came down with stomach flu, and for obvious reasons, couldn't go to the NICU to see Henry. She has stayed away from the NICU since Tuesday because she needs to make sure that she isn't contagious. Henry continued to do well on Tuesday.

On Wednesday, 5/16, Henry was doing well in the morning but not so well in the evening. The nurses felt that, although his saturation levels looked good, he looked like he was struggling with his breathing. Also, a combination of things suggested that he may have an infection (not uncommon in preemies). He had a few bradys throughout the night. Jeff decided to stay home, just in case he too had flu germs (he hasn't had symptoms, but we didn't want to take a chance).

On Thursday, 5/17, Henry was doing OK. His oxygen levels were brought down to the 30s. And, the doctors decided to give him seven days of antibiotics to fight whatever infection might be present or on the horizon. At this point, he only weighs 610 grams. Kate's family continued to visit Henry throughout the day. Kate and Jeff plan to resume NICU visitation tomorrow.