Clean and Cool

Tonight Kathy was taking care of Henry. She works one 12 hour shift a week and tonight was it. Holly does as well and she was on tonight but had another baby to take care of. That didn't stop her from bringing in some little sunglasses for Henry which made for some cute pictures. He's ready to leave the NICU and hit the beach!

Henry weighed 1890 grams tonight. That is up 5 grams from last night. He seems to grow in spurts so we have to wait and watch for a big gain. It's hard to remember that it is best to watch his progress over a week rather than night to night.

We gave Henry a bath tonight. He has come down with cradle cap which is a condition that causes irritation to the skin on the head. We'll have to treat it with baby oil and scrubbing but it can be hard to get rid of. Tonight we didn't have baby oil so we just did some scrubbing. He loves to have his "hair" washed. He seems to have taken after me in the follicle arena which means they are few and far between. He enjoyed sitting in the bathtub as well until we started scrubbing him. Overall he took it well and maintained his temperature.

After the bath he was pretty relaxed. He was too relaxed to bother with breast feeding so he got his food through the tube. He lay on Kate's chest and slept most of the evening until we left.

Off Cannula, Back on Cannula, and Two Huge Bradys

Karen was Henry's nurse today. She has taken care of him a couple of times before. One of the nice things about Karen is that she is the mother of four children, two of whom were preemies (her oldest is now 25 and was a 32-weeker, and her youngest was a 33.5-weeker), so she has inside experience from the parent side of things.

The morning was fine. I believe that my dad came in early. I arrived before Henry's 11AM meal time. He nursed for 13 minutes. The doors to his room were open, but the curtain was closed while we nursed, so I overheard bits and pieces from the rounds discussion. During rounds, the residents report on the babies. There is a new group of residents today (month change). The person reporting on Henry's arithmetic was off, but not in a way that is really detrimental or anything. She reported that Henry gained 23 grams per day on average (it's actually 20 grams on average). That's a bit different when you are talking about preemies. Hopefully, her arithmetic will improve over the month. Long story short, Dr. Catherine Tsai decided that Henry should attempt to be without his cannula, just as a trial. She also described me as an "anxious mother" (might have something to do with the number of questions I ask, and that I have questioned when and why certain labs have and have not been done).

After rounds, Dr. Tsai came to tell me in person about the room air experiment. I had a chance to ask her about the calcium labs. She said that they hadn't changed previously from week before last to last week and therefore she is basically operating under the assumption that his alk phos test is still high. That test is one of the indicants of metabolic bone disease. However, Dr. Tsai said that some studies suggest that the correlation between the alk phos test and bone density isn't great. I strongly suspect that Henry does have bone problems. Most small preemies do. And, Henry was on Lasix for a long time, meaning that calcium was constantly being stripped from his system. Dr. Tsai clarified that the fortifier wasn't likely to make any major dents in his bone density right away. We'll have to make sure he is always handled carefully, because he will fracture easily. I appreciated Dr. Tsai's candor. If Henry has bone disease, there really isn't any point to drawing blood each week to confirm what we already know. Also, Dr. Tsai said that I shouldn't worry about such things, leave it to the doctors. I think that Dr. Tsai is a good doctor. That being said, I will always inquire about such things being: (1) the doctors rotate a lot in the NICU, and (2) the experience we had with my negligent OB has left me jaded about the medical profession. When Henry goes home, he'll have to take at least two bottles a day with the fortifier in them.

Karen waited until 12:30PM to take off his cannula. She wanted to give his stomach a chance to settle a little bit. Henry looked great without the tubes.

My memory of the day is a bit hazy, but I think that Henry nursed another 5 minutes about two hours later. Then, a little before 2PM, he nursed another 5 minutes. So Karen gave him half an NG feed (about 18 mls).

Henry was doing a lot of surfing. Unfortunately, Karen had to put the cannula back on him at 2:45PM. When a lot of food is in the stomach, the stomach expands and sometimes makes it harder for babies to breath as the stomach pushes against the lungs.

Jeff came around 4PM. He was hoping to see Henry without the cannula.

Dr. Heather Cahan stopped by to talk with us. She said that the blood bank called because the donor of Henry's platelets (given to him a while ago) has reported that s/he has a tumor in his/her mouth. They gave Dr. Cahan the option to inform us or not. She chose to inform us, which I appreciate. She said that she could find no studies to suggest that a person who gives platelets will transmit a tumor growth (or potential tumor growth) to recipients. She also made some calls, because she knows that I operate best when I have facts and figures. Hopefully, it won't be a problem. So there it is.

I nursed Henry a little after 5PM for 20 minutes. Took at 15 minute break. Then, he wanted more. So, we nursed for another 20 minutes.

Around 6PM, Henry had took huge bradys. One with sats down to 39%, and another with sats down to 42% (I think). The first one was probably 1.5 minutes long. Both required blow-bys for him to get back up.

We are definitely requesting a monitor for home. I was talking to Kathy about it last night. She's from Ohio, where she said that insurance companies won't pay for baby monitors unless the mother has already had one baby die from SIDS. That's messed up. There are many staff members who say, "Let's hope you don't have to go home on a monitor." I want one. After all these bradys, there's no way I'd be able to sleep without one.

In other news, two babies in Pod Three went home today. One is Floyd. His crib was right near Henry's door. The second baby, Maximus Hector-Trinidad Rangel, also went home. His mother, Melissa Bolivar, gave me some spiritual books last night, which she said gave her strength through her baby's ordeal. Maximus is indeed named after Russel Crowes' character in Gladiator.

I learned today that one of Henry's former podmates has died. While I filled out some breast milk labels on the desk at Henry's station, I saw a card that was left on the desk for nurses and doctors to sign that was addressed to the baby's parents. The baby, Nathan, is one that I've mentioned before. He had the most amazing head of hair that I'd ever seen on an infant. His hair got so long that his grandmother had to give him a haircut during his stay in the NICU. He went home a few weeks ago. He'd been one of Henry's podmates back in the Pod Two days. And, more recently, Nathan was Henry's podmate in Pod Four. Words cannot adequately express how profoundly sad this news has made me. Nathan was a beautiful boy.

Lowest Desats I've Seen

On Saturday night, Emily was Henry's nurse again. Jeff visited Henry without me. I think that they may have done kangaroo care. Emily weighed Henry at 1880 grams.

On Sunday morning, Joyce was Henry's nurse. Grandpa Kenski held Henry in the morning for over an hour. When I arrived, Joyce had Henry down to .05 liters of flow at 30% (I think). I nursed Henry at 11AM and 2PM. He did really well. My mom came around lunch time, so that I could slip downstairs and get a quick bite to eat before Henry's 2PM feed. He was hungry again by 3:30, so I broke the feeding schedule and nursed him again. Kathy came on duty at 3PM. At 5:55PM, Henry started stirring again. So, I nursed him about 5 minutes just to calm him down, as I was headed out the door to my parents' place for a little get together for Jeff's birthday and Carolyn's going away to vet school celebrations. Kathy put on a full feed for him at 6:30 or 6:45PM.

In my absence, Henry had a brady for about 45 seconds that included a drop down to 42 beats per minute and sats down to 39%.

Kathy weighed Henry at 1885 grams. His head circumference grew 1 cm over the week, and his length increased by 1.5 cm.

When I arrived at 9:15PM, Henry was beginning to stir. I started nursing him at 9:45PM, he kept pretending like he was going to latch, but he wouldn't. Then, around 10:15-10:30, I guess he must have gotten something b/c he had yet another brady, this one last a minute and dropped his sats down to 42%. Kathy got him a feeding tube together.

Holly came on duty around 11PM.

The doctors ordered a crit test, but no metabolic labs for the morning. I talked with Moe about that because he's alkalai phosporous (???) was several times too high the past few weeks, and without as many feeds through the NG tube, Henry's not getting the fortification. She was going to ask Dr. Wispe about it this morning.

I stayed watch over him until 3:30AM. Came home. Slept a couple hours. I called into the NICU. Karen is Henry's nurse today. She said that he didn't have any more bradys since I had left. Holly reported to her that Henry's crit levels were up to 28 (meaning that his body is making red blood cells).

And the cycle begins anew...

Henry's Preemie Primer

I know that Jeff and I often use medical vocabulary in our writing that we've picked up during our 89 days (and counting crash) course in neonatalogy. So I just thought I'd write up a short vocabulary list with definitions of things that are currently on our minds.

NICU: neonatal intensive care unit

Brady: short for bradycardia; refers to the heart rate dropping low; it is a concern when the heart rate drops below 100 for 20 seconds or more

Apnea: when the baby stops breathing

As & Bs: apnea and bradys

ROP: retinopathy of prematurity; eye damage caused by prematurity; happens when the blood vessels build up at the back of the retina, potentially causing the retina to detach

IUGR: intrauterine growth restriction or intrauterine growth retardation

SGA: small for gestational age

Desat: desaturation; when the oxygen concentration in the blood drops below a certain level; in Henry's case, the alarms go off when it drops below 85%; oxygen concentration is measured with an instrument called a "pulsocs"

NG tube: nasograstric tube, which is a feeding tube that goes through the nose

Anemia: low numbers of red blood cells in the blood; this is problematic because red blood cells carry oxygen to the body

Hematocrit: measure of the number of red blood cells in the blood

Mottled: discoloration of the skin suggesting circulatory distress; mottled skin looks blotchy and uneven

Gastroesophageal reflux (also called GER or reflux): stomach contents washing up the esophagus

Henry certainly has reflux problems, which I believe trigger a good number of his bradys. The stomach contents coming up the esophagus hit his vagal nerve, which slows down the heart. Reflux can be treated with medication as it is with adults. However, a quick google search reveals three possible side effects of such medications with preemies: (1) the medications tend to inhibit digestion by toning down the stomach acid; this is particularly problematic for preemies who are often malnourished, (2) the medications may predispose babies to fungal infections, and (3) there is some suggestion that reflux medications contribute to NEC (necrotizing enterocolitis), an intestinal infection potentially resulting in the death of sections of the intestines.

Jeff pointed out to me the other day that some of the reflux may be caused by the fact that Henry has an NG tube going down to his stomach, blocking the muscle at the top of the stomach from closing all the way. The muscle is called the lower esophageal sphincter. I'm hoping that if we can get Henry to take more feeds via breast, then we can add bottles into the mix and get the NG tube removed.

Bradys, Bradys, and More Bradys

Jean was Henry's nurse today. We've had her once before, back when we were in Pod Two. Jean told me that Henry had a brady this morning when my dad was holding him. She said it lasted about 25 seconds.

I nursed him at 11AM. First round lasted 17 minutes. I stopped him just as he was desating, so the alarms didn't go off. About 15 minutes later, he was ready for round two. That lasted about 30-35 minutes at a slow pace.

He had a few bradys in the afternoon. He had at least two that made his sats get down to 50%. Jean didn't think that the one she was present for was real because the signal was low on his foot (the pulsocs location), but the pattern was a steady trend downward. If it was just a measurement fluke, I don't think it would have made a sensible pattern. Moreover, that particular brady required a blow-by of oxygen to get him back up.

I decided not to nurse him at 2PM because he was still refluxing milk back up. So they give him his afternoon meal via the NG tube.

Other than that, he looked really pale and mottled. And, he didn't want to make eye contact (a sign of disorganization). All in all, a depressing day.

Boys Night Out

Kate stayed home tonight at my urging. She had very little sleep last night, even less than she usually gets, and needed to get some rest. It's not a bad thing to have some father son time as well.

Emily was his nurse tonight. She has cared for him many times and does a great job. He weighed 1830 grams tonight which is the same as he weighed last night. His oxygen was at 45% at .075 liters of flow which is still very good. I think the resident Hans was a bit surprised by his progress on the oxygen lately. He came in earlier today and checked it and said "Is he really at .075?" Kate and I proudly confirmed that he was indeed. Joyce has done a great job on this. Some nurses just want the oxygen to be at a level that the kid won't de-sat so they don't have to bother with them. Joyce is taking it on almost as a personal crusade to get him off of the oxygen, and we really appreciate that.

The nicu was rather loud tonight. It sounded like there was a half dozen or so babies crying at any given time. The census has increased I believe to 24 at this point. They still have pod 4 closed off so that leaves 27 slots so things are getting crowded. I'm very thankful to be in the isolation room.

Nothing real interesting happened tonight. We thought about hitting some night clubs or going to the casino but finally decided on just hanging out in the nicu. Henry was behaving in a way that I feel is his norm at this point, sleeping for a few minutes and then turning purple in the head and fussing for a few seconds, sometimes accompanied by a de-sat. I have been guessing it is gas. I held him in various positions, changed his diaper, he was fed but nothing changed the behavior. However, before I left I put him down and wrapped him up real tight and wedged his pacifier in his mouth. The behavior stopped and his sat's went to the high 90's and he looked very content. So maybe it's just a sign that he isn't happy when he acts that way. Being able to read minds would be real handy about now.

Interviewing Peds

Jeff and I began our morning with a "meet and greet" with a pediatrician who is in a practice affiliated with UMC. She was nice. She is a recent graduate of UofA. She is very upbeat. The upside to her is that she doesn't have a full roster of patients yet. The downside to her is that she doesn't have the experience that some other doctors do.

Jeff and I arrived at the NICU before Henry's 11AM feed. Annie, a nurse whom hadn't taken care of Henry before, was his day nurse. We really liked her a lot. We mentioned a couple peds whom we are considering. She had high praises for two of them in particular; Henry Bianchi and Sosan Moussa have been the peds for her children and grand children. Bianchi is the doctor whom Jeff talked with on the telephone the other day. His practice is closer to where we live than the other ones. We've made an appointment with Moussa for Monday at 4:15PM. She's the pediatrician for Hans' kids (a three year old and an infant).

Henry nursed for about 13 minutes at 11AM. No problems. His heart rate started to slow down at the 13 minute mark, so I sat him up, rubbed his back, and tried to burp him before the alarms went off. Afterward, he wasn't particularly interested in nursing anymore.

Jeff took a cute picture of Henry next to my Harry Potter and the Deathly Hallows book. I am a huge Harry Potter fan. The book came out last Saturday. I haven't gotten very far into it (page 145), but it is good so far. I haven't yet mastered the ability to nurse and read simultaneously. In other HP news, our friends Talia and Scott sent us Bertie Bott's Beans candy in celebration of Harry Potter mania. Jeff tried them the other day; I'm still working up my courage. For those of you who aren't HP fans, Bertie Bott's are like jelly bellies that come in a wide range of surprising flavors. Jeff did try sardine, grass, and soap.

At 12:30PM, we headed downstairs for a "meet and greet" with Dr. Kimberly Gerhart. We originally were supposed to meet with a Dr. William Madden, who specializes in children with disabilities. Rene (the lactation consultant) recommended him, but he is retiring. Gerhart was nice. She is an assistant professor on the UMC faculty. The peds clinic is in the hospital (3rd floor). The routine would be to meet with a resident before meeting with her each time we have an appointment.

We had lunch in the cafeteria and made it back upstairs for Henry's 2PM feeding. He nursed for 7 minutes, so Annie ended up putting half a feed through his NG tube to compensate. About a half hour after the food went through, Henry refluxed and had brady that took a while to recover from.

Other than that, Henry slept on my chest until my mom came at 3:30PM. We just got home. I'm planning to take a long nap as I slept less than 2 hours last night.

Weaning Down the Flow

When I arrived this morning, Joyce said that Henry was doing spectacularly. She had been working on weaning Henry's oxygen, and she had him down to 30% at .075 liters of flow. Throughout the day, the oxygen had to be raised to 50%, but the flow stayed minimal.

I had a good nursing session with Henry in the morning (11AM). It is always a production getting him latched, but once latched, he did a good job nursing. He is rather slow about it, but that's fine. It means that he's not gulping down the milk and then choking and then having bradys. I've also changed my nursing strategy so that, like yesterday, I pump 30 minutes to 1 hour before nursing, so that he doesn't get flooded. I nursed him again at 2PM, but he kept losing interest. Over 35 minutes, I don't think that he nursed more than 9 minutes. I asked Joyce to give him some of the milk via the NG tube She gave him 1/4 of a feeding.

My mom came in the afternoon, which worked out because Jeff and I needed to go shopping. We hadn't made any nursery purchases yet (we thought that we'd have the summer to do it). We ended up going to Aldrich's on the east side of town and buying a lovely crib made of cherry wood (real wood rather than wood veneer). It's a nice looking piece of furniture. The downside was that it didn't have a matching dresser, so we'll have to figure out that one later. We also bought a good mattress, a bath tub, a diaper genie, and a portable diaper changing station. We're holding off the the stroller and car seat until we do some research. Our friend Laura (who has two children--one of them born a few weeks after Henry but was five times Henry's size!) gave me some suggestions in May that I plan on looking into. She had a great stroller for her eldest child Finn that was very smooth over cobblestone. I figure that it would probably work well in our neighborhood (we don't have cobblestone, but we have a dirt road that would probably have a similar effect on a stroller). If anyone has car seat or stroller suggestions, Jeff and I would love to hear them.

Jeff dropped me off at the hospital after shopping and dinner. He's still holding off on seeing Henry because he's not sure whether he's getting sick or has allergies. I can count the number of times that Jeff has been sick since I've known him. It's pretty darn rare, but playing it safe is best for Henry (and the other NICU babies).

When I arrived in the NICU, Kathy had just changed Henry's diaper and was weighing him. Henry was very upset and all worked up. He weighed 1830 grams (up 15 grams from last night). I tried nursing, but Henry was "disorganized" in his behavior. He was rooting and crying but couldn't seem to get it together to latch. It was very frustrating, considering that we'd had such a good day nursing. He's still a pretty sensitive little fellow. I think that the noise of the NICU (it has been really loud lately, with both controllable (adult) and uncontrollable (baby) sounds) was getting to him. By the time we got him settled to nurse, he was upset and then finally so worked up that he wore himself out. After half an hour, I got up to tell Kathy that we'd have to give him a feeding through the NG tube. In the process, I got caught on the cannula tube and disconnected it from the oxygen canister. I couldn't find Kathy initially (she was getting bottles for another mother), so I asked Chris to help me out. The good news is that even when disconnected from the oxygen, Henry didn't dip below the acceptable oxygen saturation threshold. .075 liters isn't much, but he still needs it for long stints, I think. Kathy said that when they are that low, a couple minutes might not matter, but he'd probably have trouble for longer periods time without the whiff of oxygen blowing into his nose. Kathy got his feeding for him, and I held Henry on my chest (kangaroo style).

Henry did well on my chest. Just before the end of Kathy's shift when Holly had just arrived, Henry had a brady that required a bit of stimulation from me. He was really in the zone sleeping. And, I think that it was one of those bradys caused by him being too relaxed. As near as I can tell, bradys can be brought about by three things: (1) general weakness in breathing, where the lack of breathing then causes the heart to stop or slow down, (2) being too relaxed, such that the heart forgets that it needs to pump, and (3) a vagal response brought about by bearing down, reflux in the throat, or tubes in the throat (e.g., when Henry had the replogle tube down his throat). These days, Henry's bradys tend to be caused by reflux. But this last one, I'm pretty sure, was due to being way too relaxed on my chest.

I think that Henry missed his dad today. When he was on my chest, he kept trying to grasp at it, like he does to Jeff's chest hairs. Alas, I had no chest hairs to grab (thank goodness).

Holly held a party in Henry's honor. She brought in a carrot cake, sparkling cider, and ranier cherries to celebrate Henry breaking the four pound mark. Kathy got a piece of cake before she left. Hans stopped by. He'd been by earlier trying to help Holly open the sparkling cider bottle. It wasn't budging; at one point they were trying to use tongs, but that didn't work so well. Nadine, Sue, Mary Ann, and some others also stopped by to see Henry and have some cake. Holly wanted me to bring home Jeff a piece of cake. Unfortunately, she couldn't find saran wrap, so she ended up putting the cake in a clean biohazzard bag, which I found amusing.

Jeff and I are scheduled to meeting two pediatricians tomorrow for "meet and greets" (one at 8AM and one at 12:30PM). All pediatricians that we are considering have been recommended by someone. Without knowing them, the downside to our 8AM doctor is that she just received her degree in 2006, and we aren't sure that an inexperienced doctor would be good for Henry (because he may have special needs that need to be identified as soon as possible). The disadvantage to the 12:30PM doctor is that his office is in the hospital, which means sitting in a large waiting room with a bunch of sick people before appointments. We have heard, however, that the doctor has extensive experience with kids with disabilities (in part due to the fact that his patients include a lot of low income persons who come to the hospital for their primary care). The doctor that Jeff talked to on the telephone yesterday said that he's been a pediatricians for 24 years; he's worked with "extremely low birth weight" (ELBW) preemies before; he's on our side of town; and he has two waiting rooms (one for sick kids, and one for kids needing check-ups). He called Jeff before he went on vacation, so we'll have to see when he is getting back.

We've put together a list of Henry's issues to date:
* ELBW and SGA (small for gestational age) due to IUGR (intrauterine growth retardation); born 1 lbs 4 oz at 25 weeks gestational age
* chronic lung disease
* had hyperbilirubinemia, which was resolved the first week under the bili lights
* had a PDA or patent ductus arteriosus, but it closed with medication
* came off ventilator quickly, but still requires oxygen assistance via cannula
* currently weighs 4 lbs 1/2 oz at 37 weeks gestational age
* may have had NEC; was treated for NEC
* had slight brain bleed in the cerebellum; appears to have been resolved; unclear whether it was a true bleed or a measurement artifact
* has bilateral hernias that will require an operation before he leaves the NICU
* retinopathy of prematurity Stage 2 in Zones II and III of both eyes
* anemic with hematocrit level at 26.5
* has good muscle tone
* beginning to breast feed, but most feeds are done through his NG tube
* heart murmur
* has metabolic bone disease
* noise sensitive

Jeff's Birthday Present

Joyce, Kathy, and Holly were Henry's nurses yesterday and today. And, I think that they are also on tomorrow. Yesterday was not a good day. I called in the morning, and Joyce said that Henry was fine but Cindy had reported to her that he had had a brady in the morning that required a blow-by. He hasn't had a brady that required oxygen before. He has almost always come out of the bradys himself or just needed a little stimulation. This brady lasted a minute and required vigorous stimulation plus blow-by.

My dad held Henry for a little bit in the morning before Henry had his weekly eye exam. My dad wasn't told the results of the exam. When I arrived, the doctors were in the middle of rounds. Joyce said Henry was fine. When I asked specifically about his eye exam, she said that his eyes had progressed and the doctors would talk to me about it after rounds. This bit of news sent me into a bit of a tail spin. Last week, his eyes had gone from immature to Stage 1 ROP (retinopathy of prematurity). Progression from Stage 1 isn't good. It was time for Henry to nurse, so we tried that. It didn't go particularly well. Henry didn't seem interested. And I was pretty tense. So Joyce gave him some breast milk through his nose tube.

Dr. Wispe came by with Hans. Basically, the results of the eye exam were that Henry has Stage 2 ROP that has stayed in Zones 2 and 3 of his eyes. This increases the chances that he will need laser surgery. Dr. Wispe used the 50-50 percent chance again (50 percent it will resolve without surgery; 50 percent that he'll need surgery). I was incredibly upset but trying to hold it together. Dr. Wispe said that the surgery has no baring on his survival. I told him that I am not worried about survival at this point, but I am worried about his quality of life. It just feels like if it isn't one thing, it is another. Henry will have another exam next week.

Henry started rooting about 40 minutes before his scheduled meal time, so I nursed him for several minutes. And then, I held him for a long while.

My sister Carolyn came by to visit in the afternoon. I was glad that she stopped by because I haven't seen much of her lately, and she is moving to Washington state in August. She got into vet school and is getting a scholarship (which is rather impressive considering that vet school is harder to get into than med school!). My mom came shortly after.

Jeff and I returned in the evening. Kathy weighed Henry at 1790 grams yesterday. She helped us get a bath together. Henry tolerated it, but he wasn't thrilled. He liked the water but hated being washed with the wash cloth. And, then Jeff kangarooed with Henry afterward. At one point, Henry looked like he was going to crawl right off Jeff's chest. He is pretty strong for a little fellow.

Today (Wednesday) was better than yesterday. My dad held Henry in the morning for 1 hour 15 minutes. Folks from Physical Therapy stopped by to check Henry out. Hans had written an order for PT to stop by because he'd read some articles on preemie exercises and was hoping that PT would have some suggestions. They didn't really have any suggestions and thought Henry's muscles looked good. I suspect that PT doesn't usually see people unless there is a major problem and aren't up on the literature that Hans was looking at.

I had a good chat with Joyce in the morning. She thinks that Henry looks good and wants to make sure that I focus on Henry's big picture rather than some of the negative stuff, considering that we don't know for sure that Henry will need the eye surgery. I know that she's right, but it is so hard to relax. I feel like every time that I start to relax, shit hits the fan (so to speak). It happened when Henry had to be put on steroids for his lungs (week 2 of his NICU stay). It happened when he turned gray (week 3). It happened when Henry was diagnosed with NEC. It happened when his temp dropped to 34.8 degrees Celsius. It happened when his blood sugar levels went wacky. And the list goes on. It is bad enough that he will definitely have at least one surgery before he leaves. Henry has bilateral hernias that will have to be repaired. And, unfortunately, the surgery requires intubation. We've known about this particular problem for a long time (since the first week of our NICU adventure, I believe). On the bright side, it is a fairly common procedure.

I had two nursing sessions with Henry today (one for his 11AM feeding, and one for his 2PM feeding). Thus, he didn't receive anything through his nose tube during those feeds. I was pleased that his heart didn't stop during the feedings.

Joyce has been working on getting Henry's oxygen down. She's attacking the flow rather than the air composition. She turned the composition to 100% and the flow down to .2 liters. When we left this evening, I believe that the composition was down to something like 58%.

Today is Jeff's birthday. So I left the hospital a little earlier than usual this afternoon (5PM) so that I could get home to be with him. We were going to go crib shopping but Jeff was waiting for some of the pediatricians to call back. He got a hold of one possible ped, who was leaving on vacation but called to answer any questions that Jeff had. Jeff liked him (and his first name is Henry).

Before I left that hospital, I ran into Penny who gave me some materials on brain development. She had done an assessment of Henry on Sunday when she was working. She thinks that he is almost ready for some increased interaction (e.g., hearing soft voices, maybe a non-moving mobile). If we are here when she gets back from vacation in two weeks, she is going to show us some infant massage techniques.

Kathy weighed Henry at 1815 grams tonight (4 lbs). She referred to Henry's weight as his birthday present to Jeff. It was an awesome present. Henry was asleep when we arrived. He open his eyes for a second but then went back to sleep. Kathy was very sweet in getting the room ready for our arrival. She took the old pillow cases off the pillows in our area and got a large back of bottle and caps ready (for when I pump in the room). Nice to have someone take care of the details for us.

We didn't stay long as Jeff was feeling like he is on the edge of maybe getting sick. Not unrealistic given that we come across sick people all day long in the elevators, etc. It was an OK night to leave early as Henry was sound asleep. The patterns on his monitors suggested that we was sleeping very, very well.

Kangaroo Returns

This is a consolidated post for yesterday (Sunday) and today (Monday). Yesterday Henry weighed in at 1745 grams and today he moved up to 1770 grams (3lbs 14oz). Hopefully he will keep moving forward like this. Ideally he should average 20-30 grams per day. He seems to go in spurts growing 70 grams one day, then going backward 20 grams. It would be easier on his parents if he would grow every day rather than yo-yoing up and down.

Penny was his nurse yesterday morning, Kathy was his nurse at night. Today Nancy took care of him in the morning, and Cindy cared for him in the evening. They have all taken care of him several times. Nothing really remarkable happened that didn't involve poop. For Nancy he managed to poop on two new diapers while she was changing him forcing her to do three diaper changes in one turn. Then for Cindy he had such copious amounts that he suffered what they term a "blow out," where it comes out the side of the diaper. Strange the things I find entertaining these days.

Grandpa Henry was able to hold him for an hour both yesterday and today. Grandma took a shift yesterday mid morning to afternoon while Kate did some work, and I shopped for cribs. I took over around 1:30pm until the shift change. He seemed a bit restless for both myself and Grandma yesterday.

Last night, Kate and I returned in the evening after shift change. We got to chat with Moe Kane, one of the nurse practitioners. She saw Kate reading the latest Harry Potter book and said that there were at least 3 copies in the NICU that evening.

Sunday nights are the nights that he gets measured. His head circumference grew .5cm to 30.5. That is an acceptable amount of growth. He had a couple big weeks before that so it isn't surprising that he slowed down a bit. Anywhere from .5 to 1 is normal. His length was 39cm which was actually down 1cm. I seriously doubt he shrunk, so I'm guessing there is a significant margin of error. They also tested his hematocrit level which was 26.5. This was up 1.5 from last week. This shows he is still severely anemic but is an improvement over the 25 of the last 2 weeks. Hopefully, it will start to climb at a faster rate, and he can get some color back. He has been very pale for a long time.

Today they changed his feeding schedule to be over a half hour instead of an hour. He seems to be tolerating it fairly well. He has had increasing bouts of reflux which tend to cause him to stop breathing, then his heart rate drops and his oxygen levels drop. Nice little moments of panic to keep things lively. We haven't actually seen him spit up anything. If he continues to suffer from reflux issues, they may move him to a crib that has a special sling to prop his head up more. They can also write a prescription for anti reflux medicine.

Kate was able to breast feed him for about 20 minutes today. He managed to do this without choking which is really nice. We've found there is fine line between providing life giving sustenance and having the heart stop.

The last two nights we have done the kangaroo care (aka skin to skin). Kate did it last night, and I did it tonight. We hadn't been doing it because he had stopped tolerating it a couple weeks ago and seemed to only want to be held wrapped in blankets on his back. I thought he had become too much of a big boy to enjoy it anymore. However, both last night and tonight he took to it just like the old days, oxygen saturation near 100% and sleeping for long periods of time. I'm glad that he has let us do this again because it is rather enjoyable. It makes me feel like I'm actively helping him rather than just being a cheerleader on the sidelines. It is best not to picture me in a skirt with pom poms, from experience I don't make a pretty woman, see exhibit A. This is a picture of myself, my best friend Tony and his then girlfriend Mary from circa 1990. Yes we went out in public like this, on Halloween. Tony actually flirted with a guy in the mini mart. If only I had gone for the bigger chest and could find some size 13 heels I might have had a chance. Just a little random something to break of the monotony of all those sickeningly cute baby pictures we keep posting over and over again. Hopefully it won't cause any of you psychological damage.

Bath Time Again

Kathy was still on duty when we arrived last night. Henry was sound asleep. She reported that he was up on 5 grams (1720 grams total).

I'm rather concerned about the weight loss and then failure to gain much. I'm not sure that the breastfeeding is a good idea at this point, because they can't tell how much he's actually getting. And it doesn't strike me as mere coincidence that he failed to gain on the two days when we substituted one of his feeds for a breastfeeding session. The other possibility, though, is that he's having to use more energy to keep his body warm now that he is out of the isolette.

We talked to Hans Bradshaw, Henry's resident, about pediatricians tonight. This was the first time that Jeff had met Hans. There are two practices that get involved early (e.g., they come and visit their patients in the NICU before they are released) that Hans has observed: North Hills and Catalina Pediatrics. North Hills has a new, young doctor who did her residency at UMC. She apparently comes down to the UMC NICU regularly. The advantage of her would be that she already has a rapport with the doctors in our unit. The disadvantage is that she is young. Hans and his wife had a 32-weeker. Their doctor is out of Catalina Peds. He said that either their doctor or someone from the practice visited the NICU every day. There is also a doctor on the east side of town who is supposed to be the top dog in the field (president of the academy of peds in the southwest) but he rarely takes new patients. We certainly want the best for our son, but we also want someone who has the time to spend on his case. I, of course, plan on calling around on Monday to figure this all out.

Holly came early last night so that we could give Henry a bath. He really enjoyed the beginning of the bath. Loved sitting in the water. He was very mellow through the first part of the bath. But he clearly didn't enjoy me cleaning his body. He cried through a good deal of it. We shampooed his hair at the end of the bath. He loved having his "hair" done.

Holly changed out his cannula tubes at the end of the bath. This all took awhile. Henry was getting a bit fussy toward the end because, by this time, it was about 40 minutes past his feeding time. But once the food was in him and the lights were off, he settled down and slept.

Feedings

Joyce, Kathy, and Holly were on duty yesterday and are the team on today. Yesterday (Friday) was a big day. Joyce said that Henry was ready for a crib. When I arrived in the morning, I helped move Henry into his new bed. Henry was bumped up to 35 mls for his feeding period. Before his 11AM feeding, I breastfeed him. He nursed for about 18 minutes (on and off), so Joyce skipped giving him his food via the tube.

Henry was pretty sleepy throughout the day. My mom came in the late afternoon to hold him. Kathy said that he threw a fit when she left. He prefers being held to being in his crib. Kathy settled him down and decided to hold off on the weighing of him, because he was asleep.

Jeff held him in the evening. I tried breastfeeding him, but he wasn't interested (kept falling asleep). I pulled a second recliner into our little room while Jeff held Henry. I took a nap for about 1/2 hour. I think that Henry kicked up a fuss when we put him back in his crib. I remember Holly quieting him down in a couple seconds. I don't really remember much beyond that. I'm having trouble remembering much beyond what has happened within the past few hours.

Jeff and I left around 12:30AM. I fell asleep on the couch when we got home. I woke up in a panic around 4:30AM with the feeling like we had forgotten Henry somewhere. It has happened a couple times recently. The little sleep I get isn't exactly the best.

We left before Henry was weighed last night. Joyce reported this morning that his weight had dropped a little to 1715 grams.

Joyce tried weaning down Henry's oxygen. She turned up the concentration but turned the flow down to .2 liters. Henry nursed for what amounted to about 11 minutes this afternoon. In the process, he kept choking on the milk and had 3 bradys (which made him turn blue). His oxygen had to be turned up after that (.3 liters).

Jeff came in the afternoon while we were nursing. He held him for a little while. Then, I held him for a while. At one point, he started desating, but Kathy was in the middle of a procedure on Ian. None of the other nurses came to help out (which didn't exactly instill confidence). The bottom line is that when a nurse is doing a procedure on a patient, the other nurses are supposed to step in when the alarms go off. Jeff ended up going over to where she was doing the procedure and she gave him the OK to turn up the oxygen. When we left, he was at 38% on .4 liters.

My mom held him until guests were kicked out at 6:45PM for shift change. He was fine until she put him down. Then he started yelling. When she left, Kathy was trying to quiet him down.

Living In Isolation

Tonight Chris was Henry's nurse. When we arrived, he had been moved to his new place in the isolation room. He weighed in at 1740 grams or 3 lbs 13 oz. This is a new milestone; he has reached the same weight that Kate was when she was born. Kate was in this same NICU for 17 days after being born 7 weeks premature. She was able to go home fairly quickly because she started eating and growing right away.

The isolation room is very nice. It is on a busy hallway but while he has visitors, the doors can be closed. This makes it relatively quiet. It's not sound proof by any means but is vastly superior to being out in the pod.

Henry was sleeping well when we got there and continued to sleep well for an hour or two. He was finally woken up by the nurse to change his diaper and listen to his breathing. We took him out at that point which took some work. When they moved him, they put the feeding tube and oxygen tube through one side of the isolette and the monitoring cables out the other side. This makes it so you can't really take him out because the cords can't reach.

After some adjusting and hullabaloo, they got his tubes and wires all on one side of the isolette. Kate held him for a while, but he had real problems keeping his oxygen level up. They turned him up from 30% to 100% and it didn't seem to make a difference. They then turned up how much oxygen was flowing from .4 to .6 and still he had problems. Then they suctioned out his nose, which still did not help. Chris gave us a face mask that gives out a high level of oxygen to use to get him back up to a level that wouldn't set off the alarms. We hadn't had to use that in probably a month or more.

Finally, as he continued to have problems, we asked to have the respiratory therapist come back to make sure the equipment was working. Chris couldn't find him, so she checked herself and found something was loose. His oxygen saturation immediately rose to 100%.

I don't know if he was basically off of oxygen assistance that whole time, probably an hour or so, or if he was just getting a very little amount. If he wasn't getting anything, I actually think it was kind of encouraging. He was able to get by, although not at the level he needs, but pretty close, without any additional oxygen.

It was nice to see him sleeping as soundly as he was when we first got there and again as we left. I think the isolation room is going be very good for him. Hopefully, he can stay there. His old neighbor Ian was screaming up a storm tonight, so it seems we moved just in time. Ian isn't being fed right now so he is not happy about being hungry.

We have had some conversations with staff about the past and how far things have come in the NICU. One told us that they used to play rock music in the pods and Kate's parents said that when babies stopped breathing the nurses would bang a spring board the babies were laying on to make them bounce up and down. Now they know better. Kate and I were discussing what it is they will know in another 10-20 years. I believe they will realize that the babies should have as womb like an experience as possible, quiet and dark. Seems like common sense. However, it will probably require years of research and billions of dollars to come to that conclusion.

In non Henry news, it rained tonight. Yea! We need it.

Moving to a New Location

This morning, I called Melissa Perillo, the NICU nurse manager. I told her that although we were impressed with the staff overall, noise was a problem...often a problem caused by the staff. I explained that we had a 25-weeker who still has a lot of developing to do and I wasn't convinced that the nurses were taking the noise situation seriously. They seem to think that once they look like "real" babies, they can be treated like them. With preemies, that's simply not the case. I said that because pod three has a lot of the bigger babies, it is often gossip central for the nurses. I also mentioned that the cell phone policy hasn't been enforced, which also contributes to the noise. Melissa took my concerns seriously. She said that they have been trying to work on the noise. As a temporary fix, she asked me if I wanted them to move Henry into the isolation room. I said yes. As mentioned before, the drawbacks to the isolation room are: (1) near a main hallway, (2) used to be next to the baby pterodactyl, and (3) Henry would get moved if parents needed to room in OR a child with an infectious disease needed the room. Well, given that the pterodactyl left yesterday, I decided it was worth a shot.

Karin tracked me down when I arrived. She just wanted to make sure that I really wanted the isolation room given I had turned it down before. I also received clarification that Henry would not be moved if parents were rooming in (she has another space for that). So as long as an infection disease case doesn't arrive, the room is his.

Kathy Berry (a Kathy that we haven't had before) was Henry's nurse today. She's been working at UMC's NICU for 19.5 years. She was very nice and quiet. I liked her a lot. She told me that Henry had pulled out his feeding tube last night. It's been a few days since he's done that (I often don't write it in the blog because it is normal for him to do that).

My decision for moving Henry proved justified after I had been in the pod for a few minutes. They hadn't moved Henry yet (they'll do that this evening). The mother of the baby next to Henry (Maximus) is a problem cell phone user. She had a friend who was speaking in a loud voice on her cell phone. Sherry, one of the nurses in the pod, told Carol (who was the nurse in charge of Maximus) that they had been instructed to monitor cell phones and tell parents that they could no longer use them in the NICU. As it turns out, not only is this because of noise, but the cell phone reception screws up some of the baby monitors and has been known to turn off some of them (when they are desperately needed). Carol said "Well, they keep changing their minds on the policy" in reference to management and didn't move from her chair. Sherry went to double check with management and was told that they needed to tell parents and guests not to use cell phones. She conveyed this information to Carol. Meanwhile, the woman on the cell phone continued to make calls. Carol wouldn't address the situation (continued sitting), so Sherry had to tell the woman that cell phone calls weren't allowed. The woman went to the phone near baby Ian (whose crib is right across from Henry's isolette and was being held by his great grandma), had Ian's great Aunt move, and then proceeded to make a call in a loud voice practically standing over Ian.

I guess I shouldn't be surprised at the stupidity of some people. My dad reported that during his morning visit, one baby's mom came into the pod, picked her son up under his arms, and shook him as she said "Wake up!" Mind you, this is a baby who still listed as critical (red) on the patient board.

Being in the NICU has made me come to the conclusion that people should have to get a license before they have kids. I realize that by writing this, I'm being politically incorrect. But there it is. I've seen some amazing parenting in the NICU, and I have seen stupidity and sometimes neglect. It isn't exactly rocket science to figure out the shaking babies is a no-no (even ones that are full term). In terms of neglect, last week, I heard one of the staff place a call to see what had to be done to release a baby to someone other than its mother because the mother wasn't going to be involved.

Once Maximus' mom and her friend left, the pod was relatively quiet, with the exception of a nurse who doesn't seem capable of speaking in a soft voice. She was discharging two babies in the pod. One baby who has loud parents, who typically don't contribute that much to the noise situation because they never came in much.

At some point, I took some pictures of Ian and his great grandmother. Ian's family comes into the NICU in shifts everyday to hold him. He is rarely left alone and likes to be held. His great grandmother (who looks way too youthful to be a great grandmother) was excited that I was taking pictures of her and Ian. I told her that I'd print them up at home and drop them off later. Jeff and I occasionally take pictures of some for various family members with the babies because we have the digital camera handy at all times. It's an easy way to bring some happiness to someone else's day.

Things settled down. I held Henry for a while. My mom came around 3:30PM. We changed his diaper. I handed Henry over to her, but then he got fussy and started rooting. They switched his feeds to send the 30 mls over one hour and then stop for two hours. It was toward the end of this two hours without food. So, I nursed him, and he actually did it for a few minutes, which was great.

Bath Night

On Tuesday, Debbie was Henry's day nurse. Henry's feeds were condensed to a two hour period (feed over two hours, no food for one hour). Debbie tested his blood sugar before his feed (after it had been off for an hour). It was 52, which is OK but kind of on the low side of OK.

Henry had an eye exam. Although the staff don't like it when the parents watch because it is a Clockwork Orange looking exam, I stayed and watched from a couple feet away. He has developed ROP (retinopathy of prematurity). Basically, ROP is when the blood vessels at the back of the eye build up. If too much build up occurs, then they can cause the retina to detach. Blindness is a potential side effect of ROP. Considering that Henry was so very premature and small for his gestational age, he was bound to get it...it was just a matter of when. The potential solution is laser surgery to zap some of the vessels and hence prevent detachment. But we aren't at that stage yet. Henry has a mild case (stage 1 in zones II and III of the eyes). And, hopefully, things will correct themselves. He has a follow-up exam next week.

At one point in the day, there was a power outage. All of the monitors in the pod went black. Luckily, the oxygen was set up on a backup generator of some sort. The backup can last 20 minutes. The outage messed up Henry's isolette, which kept going off, even though I could tell that the temperature was at the goal temp inside the box. After everything came back on, the monitors went out a second time. It was rather disturbing. Basically, as far as Henry's safety goes, the only thing he had to have was the oxygen. If his monitors are down for a while, it isn't great but he's been relatively stable for a few days (with the exceptions of some desats which he recovers from on his own). But, there are a lot of babies in the other pods who are attached to ventilators and such. Therefore, loss of power isn't an option.

Kathy was Henry's evening nurse on Tuesday. She does one 12-hour shift each week. She helped Jeff and I give Henry a bath. We changed and weighed him before the bath. Henry weighed 1650 grams. At first, the scale said 1680, but we decided that a 100 gram increase was highly unlikely, so we weighed him two more times (1650 was it).

Jeff took the lead on bathing Henry. Kathy guided us through the process. She took off all of his leads and pulsocs. So other than the feeding and cannula tubes, Henry was a free man. We wrapped Henry in some warm blankets. Jeff began with his hair. Henry loved having his hair washed. Then, we dried his head. Jeff placed Henry in the tub with the blankets around him. We slowly unwrapped him from the blankets in the water, and I washed him while Jeff held him upright. He loved it. However, when it came time to get Henry out of the tub, he was not a happy camper. He was really angry about being removed from the warm water. We wrapped him in a dry, warm blanket when he came out of the tub. As I held him, he decided to show his displeasure by voiding and stooling in the blankets and a little on me. The nurses in the pod were highly amused.

Word from the docs is that Henry only needs his blood sugar taken once a day. But Kathy, knowing my anxiety, asked me if I wanted her to take it again. She was afraid that I wouldn't be able to sleep. Very perceptive of her. She took it, and it was 60.

On Wednesday, Linda was Henry's day nurse. The word from the doctors was that Henry's feeds were to be given over 90 minutes rather than two hours. I held Henry for a couple hours as usual. The pod was really, really loud. The baby pterodactyl's family were incredibly loud. Like child, like parent, I suppose. Luckily, she finally went home at the end of the day. In addition, the mother of the baby next to Henry was on her cell phone all day (except when she was on the pod phone). There was one point where she was holding her baby and shouting to her baby's nurse what to tell her kids who were on the pod phone. I said something to Linda but she said, "Well, there's really nothing we can do but put Henry in the isolation room but he wouldn't be there long if someone needed it, like parents rooming in." Of course, there is another solution: People could STFU. Nurses should keep their voices low rather than using pod three as gossip central, and if guests are getting loud, nurses should tell the families that they need to keep their voices down. I told her that the staff is the problem. But she didn't know how to respond. As one can probably guess, I've had it. I'm planning to take it up with management today.

Jenny was Henry's nurse last night. It has been a long time since Henry had had Jenny as his nurse. She is a sweet, soft-spoken woman. She said that she had given him a thorough going over and thought he looked wonderful. She weighed him at 1690 grams. I don't know if it was her or Linda who did the test, but Henry's reported blood sugar for the day was 71, which is good.

The pod was quiet last night (busy but quiet). It was really nice (a different world since the Jurassic age). There were actually quite a few people in the pod, but everyone was keeping their voices low. The lights were dimmed. Henry's sats were excellent (hanging around 97-98% while Jeff was holding him). It was a really good night.

Compressed Feeds Begin

Joyce, Kathy, and Holly were on duty yesterday. Joyce had Henry down to .3 liters of flow on his oxygen. Dr. Tsai decided not to do the transfusion. There is some confusion as to whether or not his crit levels really improved. The 23.5 hematocrit levels were based blood work sent down to the lab, but when Holly had done it up in the NICU, the results were 25 last week. They recorded last week's as 23.5. This week, they didn't send it down to the lab and got 25.

I held Henry for a good part of the afternoon. Pod three is full. It is incredibly noisy with background conversations. Joyce had hoped to move him to a crib, but decided against it because of the noise factor. His body temperature has been fine.

Joyce started the compressed feeds at 1PM. This means that his continuous feeds were turned off at 12:30PM. Then, at 1PM, she gave him 30 mls to be given over a 2.5 hour period. She took his blood sugar at 1PM before starting up the feeds, and it remained relatively high (I think it was 67).

We tried breast feeding at 1PM (hoping that the stop on the feeds would make him hungry). He feed a little bit (just a few sucks). We'll keep trying.

Hans stopped by to talk about his liver. Some test results showed that Henry doesn't have enough calcium and phosphate. So they are switching his fortifier from the Enfamil to the Similac (which should meet or exceed his needs). Hans said that Henry will have fragile bones.

Jeff picked me up at the NICU during shift change. We went out to dinner and then came back around 7:45PM. The noise level was high (too many families in pod three chit chatting). The baby next to Henry has alarms going off all the time, so the nurses are desensitized to it and take FOREVER to turn the damn things off. Again, further sleep disruption for Henry. Henry was crying in his isolette when we got there. We changed Henry's diaper before Kathy weighed him. The diaper was huge. Henry was weighed at 1580 grams (so no change since yesterday). Tried nursing again, and he nursed for about a minute. I held him for a while. Then, Jeff held him for a while.

In some good news, the baby girl who makes the screeching pterodactyl noises all the time is going home soon. They really should have put that girl in the isolation room so she wouldn't ruin the atmosphere for everyone else. Her screaming fits wake everyone else up. And sleep is necessary for brain development. The father of the pterodactyl has told the nurses that he doesn't care if she screams as long as she is OK. Easy for him to say that. Meanwhile, she hurting everyone else's quality of life. I asked one of the nurses if she was in pain. They didn't think so; she's just an irritable kid. Again, seems to me that sticking such a child in an isolated area would have been to everyone's benefit.

I called the NICU this morning. Holly said that Henry was doing OK. His oxygen is at .4 liters of flow at 35%. He is still doing some surfing.

Sharp Shooter

Yesterday (Saturday), Joyce, Kathy, and Holly were on duty. Joyce thought that Henry looked good. We didn't really see a lot of our trio as their other patients were at the end of the pod, including one of the screamers, who requires a lot of attention because of gastrointestinal issues (born with her intestines outside her body, I think, which were put back with surgery).

I tried nursing Henry in the afternoon but he wasn't that interested. Joyce thinks that Henry's just about ready to go in a crib. But she's not convinced that I'm ready to have him go in a crib (which is an accurate observation). Henry is doing well with his temperature. Although he is tolerating noise better, I like the security that the isolette has to offer.

In the evening, Henry made another fountain while Jeff was changing him, so we had to get him new blankets. It's a bit challenging shielding the area from Henry's path, with him being in the isolette. We're hoping that the changing process gets easier when we have more room to maneuver when he's out of the isolette. Jeff held Henry in the evening. Holly weighed him when we put him back. He was 1560 grams. His skin looks quite pale; it is clear that he's still anemic.

Karen was Henry's Sunday day nurse. My mother held him for two hours in the morning. I held him in the afternoon. Before holding him, Henry made another fountain, which ended up soaking the blankets and hitting his pulsocs chords. Karen got a new pulsocs for him and changed out his blankets while I held him. I tried doing skin-to-skin with Henry, but I think he smelled the milk on me and cried until we tried nursing. He flailed around trying to latch for a while. He was clearly interested but not quite coordinated to do it. I ended up getting the pacifier and cradling him, which he liked.

Karen asked me what we had decided to do about his immunizations. I told her that Jeff was still looking into it. He has concerns about the shot protecting against diphtheria. Most nurses and doctors want the immunizations done. A few others, including Karen and his resident Hans, are quite understanding about our concerns and recommend researching our options. Karen has four children and had one child have a reaction to that shot (caused her discomfort for a few days after it). That child only got the first of the diphtheria sequence because of her reaction. The problem, of course, of not completing the sequence was that Karen was incredibly anxious because there were a few outbreaks of it in the community. Hans told me the other day that he and his wife decided to wait on their 32-weeker's immunizations until the baby was 2 months (age corrected) rather than 2 months (birth). Neither Karen nor Hans were saying that's what they'd recommend for Henry. They were just understanding about possibly waiting on the shots.

Holly was scheduled for a 12-hour shift tonight. Jeff went down by himself for some male bonding alone time. Holly weighed Henry at 1580 grams. His head circumference increased by 1.75 cm, so he's now at least on the growth curve when it comes to that. He increased his length by 1 cm. Holly tested his hematocrit levels, which were 25. So, we'll have to see if they decide to transfuse him tomorrow.

Jeff reported that the pod has gained a few new acquisitions. I'm hoping that they are quiet ones.

Joyce, Kathy, and Holly are on duty tomorrow.

Holding Henry

Jen was Henry's day nurse again yesterday. The pod was incredibly noisy yesterday. When I arrived, my mom was holding Henry because he'd been fussy inside the isolette. There was a lot going on in the pod. There are two babies on the opposite wall from Henry's isolette who are big and loud. On top of that, Karly, a baby on Henry's wall, had a few procedures done that made her upset. She's 2 months old and cries loudly too. She was being discharged yesterday, so there was a lot of commotion.

I held Henry was a while, but he was getting "disorganized" which is not good for his brain development. I think that the noise was getting to him. Jen had turned his oxygen flow up to .6 liters before I got there. I ended up putting him back in the isolette until things settled down. Henry got agitated inside the isolette, so I pulled him out again, and he settled in my arms for a couple hours. He did a little nuzzling.

We get different reports from different people about the levels of interaction that we can have with him. And it would be easy to choose the opinion that suits what the parents and family want to do (e.g., have a lot of interaction with the baby). Based on what I have read, I'm of the opinion that the noise should be kept to a minimum, since his brain is still laying down gray matter. Although he looks like a "normal" baby (just a lot smaller), every time he gets more stimulation than he needs, that's just mental resources getting diverted to the stimuli rather than to him laying down his neutral foundation. Basically, the research says that they continue to lay down gray matter (which is the stuff that connects areas of the brain to each other) for a month after they are born. Consequently, some development experts say that you really shouldn't overstimulate (e.g., sing, throw a lot of words at) babies even when they full-term. You should wait a month before singing to them (by then, most of the gray matter has been laid down). It would also be easy for people to misread the saturations levels and assume that if Henry's sats are OK, then he can be stimulated. But this is also a mistake. Just because he is tolerating interactions doesn't mean that he doesn't need rest and quiet time. The nurses often tell parents that they shouldn't use the monitors as a guide to their babies. And yet, I think that this is often what some nurses do (e.g., the babies' alarms in the pod aren't going off, so let's have a gossip session right next to the sleeping babies). By some nurses, I am by no means including Joyce, Kathy, and Holly in that group. I'm looking forward to the return of our trio (the Fab Three) later in the week.

Jeff came in the afternoon. We'd been planning to give Henry a bath. Penny was going to show us how to do it (there are ways to minimize stress when giving the little ones baths). But Henry was sleeping soundly with high sats, so we decided to wait. We put Henry back into his isolette around 6:15PM. Changed his diaper. They have stopped weighing the diapers on day shift. So we changed his diaper, but gone are the days when we get to predict how much it weighs. To make a long and gross story short, Henry made a huge mess while Jeff did the changing. It involved me having to wipe down the side of the isolette. Changing Henry will be so much faster and easier when we don't have the restricted movement that comes from changing a baby through port holes.

We returned around 9:30PM. Ashley was his evening nurse. After we changed his diaper, Ashley weighed him at 1550 grams. Henry was pretty darn fussy during the diaper change and weighing. He stopped crying when I took him out of the isolette and handed him to Jeff. But he was wired. He was hyper-alert, looking around. He almost looked paranoid. We gave him his pacifier, which did its job relaxing him. And he stared at Jeff for several minutes before drifting to sleep. Jeff was dozing off as well. So around 11PM, I suggested to Jeff that we call it a night. Henry was relaxed when we put him back in his isolette.

Surfing Again

On Wednesday afternoon, Jeff arrived about an hour after I left. My mom was there. Jeff held him until shift change.

Holly was Henry's nurse on Wednesday night. She weighed him at 1480 grams. Jeff held him for a while again. Henry had a good night.

Yesterday, Jen was Henry's day nurse again. Henry had been doing a little surfing. I held Henry for a couple hours. He didn't seem as crazy about the skin-to-skin. He was a little fussy. I ended up cradling him. After I left in the afternoon, my mom came and held him for a few hours.

Before I left, I ran into Hans, Henry's resident. Hans spent about half an hour with me talking about Henry's progress. We looked through some of Henry's old x-rays. We went through the ultrasound reports. It's unclear whether Henry really had a brain bleed back in May or whether that it was a measurement artifact. If it was a bleed, it was really small (6mm by 5mm on 5/8 and 4mm by 3mm on 5/15) in the cerebellum. Hans showed me Henry's most recent chest x-ray. You can actually see some tissue there. And finally, we looked at his abdominal x-rays because I wanted to see what the NEC looked like. I was curious because when we talked with Dr. Wispe on 6/18, he wasn't convinced that Henry had had NEC. Based on what I saw, there are some bubble like things on the x-ray but it doesn't look like it was in the lining. And it disappeared by the following x-ray. Hans said that Dr. Tsai said that such a pattern could be stool in the bowels, which people sometimes confuse as pneumatosis (bubbles). This is of course frustrating to find out now because the whole NEC incident put Henry two weeks back on nutrition. He was given TPN during that time, but one doesn't really gain weight on TPN. It's hard to grow with it. Looking back on 6/11, Henry showed no signs of distress other than a few As and Bs and a CRP test, which suggested infection, but the other tests didn't. Several doctors don't believe in the CRP test.

Jeff and I went to Babies R Us last night...just to get a sense of what's out there. Then, we headed to the NICU around 9PM. Ashley was Henry's evening nurse. She has taken care of him before...several weeks ago. She had weighed Henry at 1510 grams.

Jeff tried doing skin-to-skin with him, but Henry was pretty fussy. Jeff tried cradling him. Again, Henry was fussy. Then, I tried holding him. We ended up putting him back because he was doing some major surfing. His oxygen was at .5 liters of flow at 30%.

Henry did much better when he was put back in his isolette. I don't know if his surfing is brought on by too much stimulation today or not having his caffeine anymore.

I called the NICU this morning. Jen reported that Henry had done a lot of surfing through the night, so Ashley wasn't able to wean down his flow of oxygen.

Our plan for the day is to do less holding because Penny wanted to show us how to give him a bath this afternoon. We suspect that the bath will wipe out his energy reserves. We'll have to see how he's doing this afternoon.

Quiet Day

Henry was asleep for a good part of today. Jen was his day nurse. Although we had been told that they were going to test Henry's hematocrit levels today, they didn't do it. They decided not to transfuse based on the tests done on 7/6 (hematocrit at 23.5 and retic count at 4). It is a bit frustrating when we are told that they are going to do something and then they make decisions based on old information. I thought that Henry looked rather pale today, and he seemed more tired than usual. But I guess that they are waiting for him to have some bradys before they decide to transfuse. They decided in rounds to pull his IV (which Holly had already pulled out a few nights ago because it had gone bad). According to Jen, they don't want to transfuse because that would set back his red blood cell production 6 weeks. They also decided today to stop his caffeine prescription. He had been getting caffeine every day to help stimulate his heart rate and breathing.

I did skin-to-skin with him today. It had been a few days since we'd done skin-to-skin because he's been wearing outfits. Tried nursing, but he wasn't interested. I suspect that until he's slowly weaned off the continuous feeds, he isn't going to get excited about nursing. When Jen aspirated his stomach, he had 8 mls of breast milk in there. That's OK because preemies are allowed to have up to their hourly dose of milk in their stomachs when on continuous feeds. He's currently getting 9 mls of breast milk over the course of an hour. And the breast milk is still being fortified to 24 calories per ounce.

One of the frustrating things about the NICU (and I suppose medicine in general) is that we often get different instructions from different people. I was upset yesterday because in the discharge packet, they said that freshly expressed breast milk could only be refrigerated for 24 hours. But when we first arrived in the NICU, we were told that it could last a week. We had quite a few vials of breast milk in our fridge for 6 days, which were then moved to the freezer when it was clear that Henry wasn't going to use them right away (this was early on in our adventure). Henry has since consumed those vials of milk when we took the frozen vials into the NICU. I became concerned that they have been putting spoiled milk in his stomach. I asked Lisa G. yesterday, and she said that she wouldn't keep it for more than 24 hours. Then today, Jen thought it was a week, but she asked another nurse who said 48 hours. I ended up talking to the lactation consultant, Rene, who clarified that it was good for 1 week in the fridge at home (only 24 hours in the NICU because the NICU fridge is opened and closed 300 times a day).

My mom arrived at the NICU while I was holding Henry. I left around 2:30PM. She stayed with Henry. Then, Jeff stayed with Henry from 3:30PM until shift change.

I'm continuing to have problems with the insurance company (Schaller Anderson). University Physicians Healthcare sent me a bill for $170 that they said Schaller Anderson wouldn't pay. Basically, the anesthesiologist's bill for my c-section was $1020 for his time (64 minutes) and $170 for 2 units of emergency anesthesia. I called Schaller Anderson yesterday and they called back to say that I needed to call UPH to have them resubmit the bill as one item rather than two separate line times. My insurance is supposed to cover emergencies in total. Considering that the UPH bill is simply for the same event but broken down by detailed expenses, I don't understand what Schaller Anderson's problem is. The brain trust in the claims department categorized the emergency anesthesia line item as a "misc physical service." Under their codebook, that's usually reserved for cosmetic surgery (which they don't cover). I don't think that I would have been able to handle the c-section without the anesthesia (hence, it didn't seem cosmetic to me). I have a high pain threshold, but I suspect that the emergency c-section without the 2 units would have been beyond my pain tolerance capacity. I called UPH and asked them to resubmit the bill. According to them, the "misc physical service" category was done by Schaller Anderson's claim department. The UPH side clearly labeled the anesthesia as "emergency anesthesia 2 units." I considered calling my case worker Rhoda about this but her helpful advice is often to call the phone number at the back of my insurance card, which is of course what I did.

Henry's Fountain

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

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

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

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

Sponge Bath

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

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

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

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

Jurassic Pod

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

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

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

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

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

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

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

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

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

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

Adventures with the Temp Probe

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

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

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

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

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

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