Due Date

Saturday was Henry's original due date (August 11). It is hard to believe that Henry wasn't supposed to be born until today.

Joyce was Henry's nurse today. Jeff and I both called her in the morning, and she said that Henry was fine. Grandpa Kenski spent the morning with Henry. Joyce showed him how to change Henry's diaper.

Although the orders say that Henry can be discharged on Wednesday, Joyce warned me that these discharges almost always get delayed for one reason or another (e.g., surgery date gets changed, something doesn't get processed, the baby has a brady at the last minute). We are optimistic that Henry will be discharged sometime in the next week. The hernia surgery will require intubation (tube down throat, connected to respirator). Some babies get weaned off the ventilator in a few hours, and for others, it takes a couple days. The moderate intravenous sedation that Henry was given for the eye surgery resulted in Henry needing some additional cannula flow support for the evening. Therefore, I suspect that the stronger general anesthesia given for the hernia surgery will have a significant effect on his post-operative oxygen needs. Also, Henry had a apnea/brady episode about 10 minutes after Henry was given some of his reflux medicine today, while I was talking with Joyce. And, Nadine had had a similar experience before she and Joyce changed shifts earlier in the morning.

The pulmonary nurse, Kathy R., stopped by to make an appointment with me for Wednesday afternoon, when she will be training Jeff and me on the oxygen system and apnea monitors. She'll also be giving us infant CPR instruction. Given that the training won't take place until Wednesday, there's no way that Henry will come home before Thursday. After being trained on the equipment, Jeff and I will need to do a "Rooming-In" stay at the NICU. That means we'll need to spend an overnight in the NICU with Henry and his home monitor and oxygen systems--just to make sure that we know what we are doing. The apnea monitor might not be imperative for Henry's situation. He's borderline on the apnea/brady thing. Dr. Erenberg doesn't like sending babies home on the monitors, if it can be helped, because of the high rate of false positives. Jeff and I are will to take the risk of the false positives. Yes, false positives on the alarm will be annoying, but it is worth the inconvenience if we can preempt problems with true apnea/brady spells.

Joyce outdid herself today...again. She said that if Jeff and I were interested, she'd be happy to stay late with Henry after her shift, so that Jeff and I could have a date. After 15 weeks, Joyce knows me inside and out. She has certainly seen me under circumstances that have pressed my emotional and psychological capacities to their limits. She knows that I don't feel comfortable leaving Henry alone, even in the NICU with all of his bells and alarms active. I am hoping that six months from now, I'll be able to be more relaxed about Henry and not quite so protective as I have to be now.

We did take Joyce up on her offer. My mom held and watched Henry in the late afternoon. And, after she left before shift change, Joyce took over the "Henry watch." Jeff and I went to see The Bourne Ultimatum. Then, we came back home and took the dogs for a walk. And finally, we went to dinner before heading back to the hospital around 9:30PM. It was nice. Jeff and I ended up in the first row of The Bourne Ultimatum, a position that we don't recommend. It reminded us of the time that we went and saw Wag the Dog with Jenny S-G. in Philly (front row, very steep angle). The angle was a bit much for all the action, but we liked the movie nonetheless (not as much as The Bourne Identity, but much better than The Bourne Supremacy).

Joyce said that Henry slept until 8:15PM. He took 65 mls. Then, an hour later, he was still hungry and took another 30 mls. Joyce read to him from her nursing magazine when he wasn't eating. He was wide awake when she turned him over to me.

Nadine was on duty. Henry was rooting a little bit but also spitting up, so I wasn't convinced that more food was in order. Nadine asked if we wanted to give him a bath. He hadn't had one since Monday, so we thought it was a good idea, but I was concerned about his IV. We discussed our IV options. Thursday night, Holly said that we could get rid of it as soon as his pain meds were done. Thinking ahead to Monday's surgery, she said that she prefers to use a fresh IV on veins before surgeries. I think that Nadine agreed with Holly on that point. I don't like the IV because I've seen my son grab it (and he is a very strong young man). Today, Joyce said that we should try to keep the IV because the IV was well placed in a good vein that was giving excellent blood return. I wasn't thrilled with keeping the IV, but given that my son's veins often blow, a good IV placement isn't something to treat lightly. Nadine reported that the vein at last check was still giving an excellent return. So, we are keeping the IV in Henry over the weekend.

Nadine weighed Henry before the bath. He's 2195 grams...a loss since yesterday, but we had figured that a good part of yesterday's weigh gain was actually fluid retention. Jeff and I were both really pleased with the 2195 figure. Two nights ago, he was 2100 grams...so a 95 gram increase for two nights is very good. Nadine wrapped Henry's IV arm in a plastic bag with foamy tape before we gave Henry his bath. He really seemed to enjoy it this evening. He didn't fuss, even when I was using the wash cloth on him.

After his bath, he got new leads and pulsocs. Nadine showed Jeff how to put the duoderm and tegaderm on Henry's skin to hold the cannula tubes in place. The duoderm is a rubbery strip that goes on the baby's face to protect his skin. The tegaderm is a really light, flexible, clear tape that holds the cannula tubes in place on top of the duoderm. Jeff did an excellent job fixing Henry's cannula. He was a much better student than I was when Holly showed me how to do it.

Henry was sound asleep when he left. He had a good evening.

Jeff took some pictures of Henry next to his bull Frosty. It is amazing to look at Henry today in comparison to Henry when he was a month old. The first picture below is of Henry on May 29. The last two pictures were taken this evening. In the last two pictures, Henry is bundled in his Danny Sling.

It's Not Surgery, It's a Procedure

Henry's eye surgery is complete. Actually, Dr. Erenberg, the attending neonatalogist, was very adamant that it is not a "surgery," it is a "procedure" or a "treatment." Of course as he is explaining this to Kate for the second time, a nurse walks up and asks when the "laser surgery" is going to take place. Cue the exasperated look on the doctors face and a laugh track. The difference between surgery and a procedure being? The best we could get was that they don't have to cut Henry open, which seems to be the criteria for surgery.

Anyway, it is done and seems to have gone ok. We won't really know for another 10 days, which is when we have a follow up with the eye doctor. My understanding is that they used the laser to destroy the outside of the retina. The reason for this is that blood vessels did not have time to grow in that area. So the eye tries to compensate by creating new blood vessels which are not normally there and extend them to the part of the eye on the edges that did not develop the blood vessels. By destroying the part that is lacking the blood vessels, the need for the blood at the outer parts of the retina is removed and so the abnormal blood vessels stop growing. If left unchecked the abnormal vessels would rupture and cause scarring that would cause the retina to detach, bunch up, and wrinkle, eventually detaching and causing blindness.

The retina doctor, Dr. Patel, used the laser to zap the outer part of the retina 4487 times in his right eye and 4780 times in his left eye. He said that the numbers weren't an indicator of which eye was worse off. The one that he did 4700 times was actually better off, but it had more area that was available to zap with the laser so he zapped it. He said it was like coloring, you fill in as much as you possibly can in the area available.

After the surgery, um, I mean procedure, Henry was pretty sacked out. His eyes didn't look too puffy. They have to hold the eyes open with clamps which tends to cause the eyes to puff up for a couple days. He had a few apnea/brady episodes. That is fairly common because they are so relaxed due to the sedation. These will not count against him in the count of 5 days without an apnea or brady that he needs to be released.

He was rather cold. They tried to read his temperature and couldn't get the thermometer to work. This happened once before when he was very cold. They put him under a warmer and put some warm blankets on him and he warmed up rather quickly. That was a bit unnerving but it is unlikely to cause him any problems as it was only for a short period of time.

He was weighed at 2230 grams but that seems very unlikely because it is 130 grams more than the previous night. He had an iv in him, which adds a little. We're guessing it's mostly water. Tonight should be a better gauge of his true weight. He started to wake up around midnight and even took a little food. We left him in Nadine's capable hands around 2am.

Kate's parents were there for the duration of the procedure. Holly also came in during her vacation time so she could help get him prepped and stayed around until almost midnight to keep us company. I think she is keeping an eye on Kate and myself as much as she is on Henry. We all went down the cafeteria for a bite to eat while we waited. The procedure took a couple hours to complete. It also got started a bit late. It was originally scheduled for 4pm. Then they changed it to 3pm about and hour before hand. Then they didn't actually get started until about 4:30pm.

This morning Joyce has reported that he is doing well. He ate 50ml's at 7:30am and at around 10:15am his grandpa was about to feed him again. He looks good and the apnea/brady episodes seem to have stopped.

Grandpa Kenski is going to stay there for a while this morning to let Kate and me get some rest. Of course after going to bed at 3:30am, my work called at 7:30am. Ugh! I'm going to go shopping for a car seat this morning and Kate is going to go visit him.

Eye Surgery This Afternoon

Yesterday, Janice was Henry's nurse for the first part of the day. We haven't had Janice since Henry's Pod Two days. She's very nice. She was training a new nurse (whose name escapes me at the moment), so there were actually two nurses helping with Henry.

Henry had a quiet morning. Grandpa Kenski fed Henry 40 mls of milk. When I arrived, Henry looked comfortable in his Danny Sling. I've been skeptical about the Danny Sling really helping. Henry's new bed is tipped at an angle, and the Danny Sling holds him up. The GI study is a requirement for bed tipping. But our nurses "illegally" had been tipping up his bassinet once they figured he had reflux. It didn't take them a probe to know that he had it. We (Grandpa Kenski, Grandma Kenski, Jeff, and me) hold him upright a good deal of the time, so I didn't think the Danny Sling would add much. Nonetheless, Henry gets swaddled well before being put in the Danny Sling, which he very much likes, so he seems content enough.

Henry started his reflux meds yesterday (regelin (sp?) and something else). When I held him during the day, he slept well. So either he was just having a good day, or perhaps the meds have begun to do their job.

I asked Janice about the retina specialist. She asked the doctor and nurse practitioner who simply said that they didn't schedule it, so they had no idea (and didn't seem to want to check on it). This was the same response as yesterday. So I asked Janice to call Dr. Miller, Tuesday's eye examiner, to see what the status was. Dr. Patel had an opening in the evening or next day.

Janice reported that Joyce had called in for a Henry update. I thought that was sweet.

Grandma Kenski came in the afternoon to hold him. Around 3PM, Janice switched with Carol. The staff had reorganized the locations of some of the babies, which resulted in a staff change for Henry.

After I left at 3:30PM to get my haircut for the first time since February, Carol talked with my mom. She told my mom that she thinks the hernias are making life uncomfortable for Henry. I've asked a few nurses about whether or not hernias hurt. Most of them say that they shouldn't hurt, but I think that Carol is probably right. How comfortable can it be to have to squeeze stuff through your intestines through a poorly designed route? Can't imagine that it would be a lot of fun. So, hopefully, Henry will be even more restful after his hernia surgery next week.

Jeff and I had dinner plans with one of Jeff's bosses who was swinging by the west coast and wanted to meet Jeff. Right before I left to meet them for dinner, nurse practitioner Moe Kane called. Dr. Patel stopped by for Henry's second opinion eye exam and said that he had Stage 3 and needed laser surgery. She put Dr. Patel on the phone. He said that Henry's eyes didn't quite meet the classical definition for surgery based on some study, but his eyes are headed in that direction. He said that he preferred to be aggressive with the ROP and treat it right away. I had to give my verbal consent to both Dr. Patel and Moe, which I did. Hopefully, this will resolve the ROP. The lasers will be working on the periphery of his eye and thus shouldn't affect Henry's central vision. Dr. Patel said that most of the time, this procedure is successful. Out of the last ten babies he's had, it didn't work for one, who then required more invasive surgery.

After I hung up with Dr. Patel and Moe, Moe called back a few minutes later. The surgery is scheduled for Friday (today) at 4PM. It will be done in the OR in the NICU.

Had a nice dinner with Jeff and Michael Loop. Michael has a nephew born at 1.3 lbs.

My parents went back to see Henry after shift change, because they knew we'd be at dinner.

I got to the NICU around 9:30PM. Jeff was about 10 minutes behind me. Nadine was Henry's evening nurse, which was great. We haven't mentioned Nadine in a while, but she is one of Henry's primaries. Unfortunately, she always seems to be scheduled for the same days as our Dream Team, so we rarely see her. She hasn't had Henry since early July, I think (Pod Four days).

Henry looked peaceful in his Danny Sling. He hadn't eaten in a while, so I got him ready for feeding. He managed to pee on me twice. First time, I caught it early. But in the process of trying to figure out whether he'd wet his blankets, he sharp shooted me again (and did in fact get his clothes and blankets) and soaked my wedding ring (which I rarely wear these days because of the constant handwashing I do). Nadine had a good laugh over it. She said, "That's boys for you."

Henry was weighed at 2100 grams.

Nadine said that Holly called in. Holly is supposed to be on vacation, but she wants to come into work to be the nurse to prep Henry for his surgery. I know that Dr. Erenberg says it is a treatment, not a surgery. However, Henry will have to be sedated during this "treatment" with intravenous anesthetics. Holly is the IV Queen of the NICU, so I'm sure that she'll do a great job getting Henry prepped. And, I am touched that she cares so much about Henry that she is coming into work during her vacation to do it!

I nursed Henry for about 35-40 minutes over an hour. And he still wasn't satisfied, so I had Jeff hold him. He was very unhappy about not finding food on Jeff, so Nadine prepared a bottle, of which he consumed another 32 mls.

We were happy to see him eating a lot, because beginning tomorrow (most likely some time between 10AM and noon), they will place him on NPO (which stands for something in latin meaning no food).

We had a good night with Henry and left around 1AM.

Quiet Night

Tonight I took the night shift and let Kate get some rest. The 24 hour observation for the ph study was really a pain and has wiped us both out. It seems like a lot of hassle to go through to confirm what everyone was already saying, he has reflux. I don't know why they just don't treat for reflux and see if the symptoms go away. The treatment can be as simple as elevating their head while in bed and giving them Zantac, an over the counter drug. Instead they take days to get a specialist and make us stay up all night recording data that frankly they shouldn't need us to record since he is already hooked up to monitors. Why have a low cost quick solution when you can have a high cost one that takes a long time?

They have rescheduled his hernia surgery for Monday instead of Friday, I believe because of the eye situation. That means the earliest he could possibly come home would be Wednesday of next week.

Angela was Henry's nurse again tonight. She weighed him in at 2050 grams again. I knew I shouldn't have been so excited about his weight gain the other day. Now we are back to the typical routine, big weight gains followed by no gain or losses.

I found him resting comfortably. He is now in a crib instead of a bassinet. He is in a Danny Sling which keeps him in position while he is tipped up. Without it he would slide down the mattress to the bottom of the crib.

Around 9pm he got fussy so I did his cares and he got weighed. Then he was fed. He hasn't been eating as much for me the last couple nights. Hopefully as he gets better rest due to the lack of reflux he will regain his appetite.

I stayed around through another feeding a couple hours later. When I left he was resting quietly. He wasn't quite asleep but was pretty close.

The NICU was much quieter tonight. The number of babies was down from 26 to 23. Last night I believe they had two new arrivals. Holly was on vacation but they called her and she came in anyway because they were so busy. It is sad to see it when it is busy because you know that so many people are going through the same pain that we have been going through.

ROP Stage 3

Grandpa Kenski had his morning visit with Henry. Joyce was on-call this morning, so she worked the first part of the day. She called in the morning to let Jeff and me know that the Ph probe was scheduled for 11AM. The Ph probe is a 24 hour monitoring system to test the extent to which Henry's stomach is producing acid that is going up his esophagus. She said that he looked great. His color is pink (amazing what red blood cells can do).

I arrived around 10:30AM. He was waking up but couldn't be fed because of the Ph probe. The nurse for the GI doctor came to insert the probe and hooked it to a monitor. The probe is in a tube that goes through the nose (just like an NG tube), but it doesn't reach the stomach. It lies right above the sphincter. Basically, it records the Ph levels throughout the 24 hour cycle. In addition, we have to track when he has notable episodes, so that they can match it against the recording. So far, looks to me like the boy has major reflux. The Ph levels in his esophagus have been really, really low several times already during the day.

After the GI nurse left, I nursed Henry for a little while. And, he does look good. His color is nice. Joyce said that he has more patience during diaper changes, which is good.

Joyce was supposed to leave around noon, but she decided to wait for the eye exam. That happened around 12:30PM. Dr. Miller was the doctor. And, the bad news is that Henry has progressed to Stage 3 ROP. That means laser surgery before the retinas detach. Dr. Miller is going to have the retina specialist come and give a second opinion. That will happen sometime in the next two days.

Dr. Erenberg had scheduled Henry's hernia repair surgery for Friday. However, given the new finding about Henry's eyes, the eye surgery will take priority. Dr. Erenberg corrected me when I called it "eye surgery." He said it was really an "eye treatment." I guess the difference is that they won't be cutting him. But considering that they will be zapping his eyes with lasers and he will have to be sedated, I think that "surgery" isn't far off the mark (one of the nurses today agreed with me; she said it was surgery).

Melita took over for Joyce until shift change. My mom came in the afternoon and held Henry after I nursed him. He nursed for 21 minutes.

Melita fed him a bottle of apple juice in late afternoon. Henry has to take two bottles of apple juice during the Ph probe study. This is because apple juice has more acidity than does breast milk (and they wanted the variation for the study).

Joyce is back on duty on Saturday. She called to check up on Henry yesterday (on her day off). And, she plans to come by before he checks out some time next week.

You Want Mooore???

I think Henry has finally figured out that if he wants to get out of the NICU he needs to grow. Now he is doing his best to make that happen. Last night he weighed 2050 grams, or 4lbs 8 oz. That is 50 grams more than the previous night which is fantastic. He has grown 125 grams in the last 3 days which is over 40 grams per day.

He has certainly been one to grow in spurts. It's hard to stop from thinking, "If he keeps this up he'll be 5lbs in a week." While it is possible and I'm hoping that it happens, the reality is he will probably put on the brakes in a day or two.

He is eating very well though. Last night I fed him at 9pm and he ate 70ml's. That is 20 more than I had seen him eat in any previous sitting. He is keeping it down very well too. Kate experienced some heart rate drops during the day yesterday when it seemed like he was choking. However, they are much less dramatic than they used to be and I haven't seen that happen for a couple days now.

Last night he was extremely active. I came in and he almost immediately started crying. After Sue weighed him and I did his cares I fed him 50 ml's. He was not satisfied. While trying to burp him he lay on my shoulder and lifted his head up and moved it from side to side and even head butted me. He wiggled to the point I thought he would crawl right up over my shoulder. After about 10 minutes of this I finally asked for some more milk which he plowed through. He still seemed to want more when he was done. I didn't give it to him. I was afraid of him getting sick and throwing it all up. I was definately tempted though. I'd like to know how much he can handle.

Maybe I'll put up some pictures of past champions of the Philadelphia Wing Bowl in his bassonet to inspire him. That is a lovely competition where they stuff their faces with hot wings. The winner last time I saw it was a tiny little asian woman who had the nick name "The Black Widow." I can't imagine a nobler aspiration than to eat more hot wings than anyone else on the planet.

After about an hour of changing him from one position to the next I finally got him relatively settled down. Nurse Joyce made an interesting point to Kate the other day. This is how he is when he is anemic. He is going to be much more active when he gets his red blood cell count up to normal. Yikes. I really think he might be crawling by the end of the month.

This recent progress has me very excited about him coming home. It seems like it could be very very soon. I don't want to jinx things but here's to hoping.

That opens up a whole new pandora's box. What are things going to be like when he is home? With his history Kate and I can't imagine leaving him unattended without monitors. So we're figuring we won't be sleeping for the next month or so as we will probably be keeping eyes on him 24x7. We might bring him home on monitors. I know that Kate definately wants this and I think it is probably the best thing for our peace of mind but it might not be necessary. He will most likely be on oxygen. Kate has pointed out that this is probably a good thing considering the animals we have. We've cleaned and kicked the dogs out of the bedroom where Henry's crib is. We are praying that he isn't allergic to pets as this would be devastating to our first family of 3 cats and 2 dogs. I'll probably be ordering some mega air filter soon.

I had better go, just doing a quick blog on my lunch hour. Kate is at the hospital where they were inserting the GI probe this morning at 11am. We'll see if this shows anything interesting.

2 Kilos and Counting

As Jeff mentioned in the last post, the days seem to blur together. I'm looking forward to the day when we can think more about the future rather than living minute to minute.

On Saturday, Kathy was on call. She spent a few hours with Henry before switching off at the 6:45PM shift change with Cindy, who was his evening nurse.

I went with Jeff in the evening to visit Henry, but Jeff did all the holding and changing. I spent most of the time reading Harry Potter. Henry weighed 1965 grams. I don't recall anything eventful happening. Jeff held, changed, and fed Henry.

On Sunday, Joyce was on duty. Apparently, she isn't going on vacation until next week. But, Holly and Kathy are on vacation.

Henry had an excellent day nursing. As Jeff has mentioned before, getting Henry latched is usually a big production. I haven't had a whole lot of luck unless Joyce helps, holding Henry's head. She has the magic touch. Long story short, Henry figured things out yesterday. No big production. It was nice.

Jeff and I finally made a decision about the immunizations. We decided to get his first round of shots (5 total). I think that Joyce was happy that Jeff and I had finally made a decision about Henry's shots, but she was unhappy that I decided to sign the forms the day she was on duty. The doctors recommend shots at 2 months, even if the babies are born early. Jeff and I have been dragging our feet on them, because one of Jeff's nephews had a negative reaction to the MMR, so we are well aware of the potential (not so well publicized) side effects of immunizations. Doctors don't know why the side effects sometimes occur. I've taken up the charge of doing a lot of research on various medical procedures throughout Henry's stay, but I gave Jeff the task of doing the immunization research. Of the five shots given at 2 months (DtaP #1: diphtheria , tetanus, and pertussis; IPV #1: polio; Comvax #1 (Hib & Hep B): haemophilus influenzae and hepatitis b; PCV #1: pneumococcal), the one that is a small concern is the diphtheria shot. We weighed the costs and benefits. Unfortunately, whooping cough is active in the Tucson community, so we decided that Henry needed the vaccine. I'm sure that we'll revisit the issue before his MMR (given at 12 months).

Joyce really hates giving shots. None of the nurses like doing it. Karin said that they don't mind giving IVs because the IV is just a pin prick. Immunizations are more painful (inserting fluids in spots that aren't supposed to have fluid in them normally). I felt kind of bad doing that to Joyce, because she has been so great to us. But, I wanted the best nurse to give the shots to Henry. And, well, that meant Joyce. I originally thought that they were going to give the shots over a week, but through some miscommunication, Henry got all five at one sitting. At least, it is over with. Joyce had a hard time finding someone to help her. Everyone she asked suddenly had other things to do. But Karin, who also hates giving shots, helped her out. Before giving the shots, Joyce asked me if I was sure that I wanted to watch. I felt obliged. If Henry feels pain, I feel like I should have to suffer through watching it. Joyce and Karin jokingly offered me tissue before they began as both of them have seen me tear up a few times over the past few months. Joyce has had the luck of being on duty during big Henry moments (e.g., the NEC announcement, the Stage 2 ROP finding, etc.), which means consoling me and helping me see the big picture on the NICU roller coaster.

Joyce gave Henry some sucrose (minimizes pain in babies) before they began. Joyce and Karin gave two shots at once (one in each thigh simultaneously), so that the pain would be over with as quickly as possible. Joyce convinced Karin to give the fifth one (in his arm, because his thighs got a little swollen with two rounds of two shots). Henry handled them like a champ. He cried a little, but all in all, he bore the pain well. Over the next 24 hours, Henry was given Tylenol to take the edge off the pain.

My mom arrived before the shots were given. Once the shots were given and I was convinced Henry was OK, my mom held him, and I went home.

Jeff took the evening shift at the hospital. Rosalind (whom I have never met) was Henry's evening nurse last night. Sunday is measurement night. Henry's head increased .5 cm. His length increased 1.5 cm. And, he weighed 2000 grams!

Today (Monday), Linda was Henry's day nurse. I arrived early. I ran into my dad at the entrance. He arrived a little earlier than usual so that he could give Henry his bottle. When we arrived, Linda had just given Henry a bath, complete with fresh leads and a new pulsocs. I came in early to attend a nursing lecture on baby blues with Holly. Holly is on vacation, but she comes to the in-service nursing lectures. The lecture was held in an auditorium in the hospital. There was a play after the lecture, but I left halfway through it. It was a little too artsy for me (not to mention that I'm a bit of a snob when it comes to theater...watching A LOT of theater in NYC and Philly made me this way). And, I missed Henry. It was kind of hard being in the same building as Henry but not with Henry for an extended period of time.

I went back upstairs to the NICU to nurse Henry. Linda reported that Henry had taken 52 mls from my dad at 8AM. After I nursed Henry around 12PM, Holly stopped by (she had stayed for the entire play and said I didn't miss much). Henry's cannula was askew, so she got new tubing. His old tubing was completely blocked with dried snot. I strongly suspect that he was getting almost no oxygen from it. The good news about this is that it suggests that he might be OK without the cannula. Holly did an excellent job taping the new cannula down. A lot of people asked Holly what she was doing in the NICU during her vacation. She explained that she'd been at the in-service lecture. I've never observed anyone take as much joy from her vocation as Holly does. I know that she really cares about Henry. She's become a good friend to me. She's great at what she does. And, she truly enjoys babies in general.

There are a lot of good nurses in the NICU. Enjoying babies is just one of those things that really makes Holly, Kathy, and Joyce stand out. Other nurses, of course, like babies too. But with the Dream Team, it is a pleasure to watch them interact with their patients. Mind you, their patients (being sick, hence in the NICU) aren't always in the best of moods. They handle all sorts of cases brilliantly.

Today, Henry had a few heart rate drops while spitting up/choking, but the drops weren't long enough to set the alarms off. He was a grazer today, wanting to nurse for a little while and then sleeping. My mom came in the afternoon. Henry was supposed to have a GI exam today, but the doctor never showed up. Apparently, there is only one GI pediatric specialist who does the reflux tracking in all of Tucson. So, hopefully, the tracking will take place sometime this week. I asked Linda what happened to Henry's hearing test. I didn't think that there was any wrong with his hearing because I know he hates noise. But he can't leave the NICU until the hearing test is done. Linda found out that they did it two nights ago. His hearing is fine.

The other good news for the day was that Henry's hematocrit (red cell count) is at 31. That's still low, but it is a big increase from last Sunday's 28. He's making great progress on this. Hopefully, his hematocrit will continue to rise, and he'll continue to get bigger (meaning more lung tissue), and then we can truly get rid of the cannula and stop worrying about desaturations.

Jeff is taking the evening shift at the hospital. He wanted me to stay home and get some rest, because I got up early this morning (and he likes some alone time with his son). I'm going to sign off now and return to Harry Potter.

Eviction Notice

It has been a long few days. One day is starting to run into the other, and it is hard to keep track of things. Fortunately nothing too dramatic has happened.

Lydia was his night nurse last night. She seems to have warmed up to us significantly. The first time we had her she was rather distant and didn't seem to be interested in answering our questions. Now, she brings Kate coffee and looks after us very well. We think the change is because she is good friends with Holly. Mary was his nurse during the day yesterday, and Joyce is back on today.

Last night Henry weighed 1925 grams which was up 15 grams from the previous day. He is still down from a couple days ago when he weighed 1930 grams which is just shy of 4lbs 4 oz. Hopefully he will resume gaining an average of 20 grams a day again. Growing seems to be the cure to all that ails him so set backs like this week are rather frustrating.

After Kate left on Thursday night, I stayed until around 4am. I think I mentioned before how we gut stuck in these cycles. He feeds and then needs to be held upright for 1-2 hours after feeding to prevent reflux. Then before you know it he feeds again and has to be held again. It is very difficult to leave because when he has the reflux he is basically gagging and can't breathe. How do you leave your child when you know at any minute they might start gagging? Of course the nurses will be there and the monitors are on but the best thing to do is to prevent it by holding him upright.

I have enjoyed feeding him via the bottle the last couple days. It is a bit nerve racking in that he might forget to breathe and have an episode or get things down the wrong tube. However, so far he seems to do very well at it.

I feel a bit guilty because I have not been a big fan of the breast feeding. It is not possible to know how much food he gets when he breast feeds and he has not been gaining weight when he does it. It is also a big production to get him to latch on. It is very frustrating for Kate to have him go into hysterics while trying to feed him. Joyce is the only one who can really seem to get him to latch quickly by holding his head and forcing him on. I have tried to emulate her technique but I'm missing something.

I have to admit that I've also been disappointed to be excluded from getting to hold him and interact with him as much because it seems he always needs to be fed. I know it is important for Kate. Besides the bonding aspect for her, I think it would also be nice if she could be some reprieve from the breast pump.

I think that the most interesting thing to happen in the last couple days was a conversation between Kate and Dr. Erenberg, the latest attending to be in charge of the NICU. He started the conversation by telling Kate that they needed to get Henry home because he has overstayed his welcome. He adjusted Henry's oxygen to a level that is what he would get if he went home on oxygen, 1/8th of a liter of flow and 100%. This equals .125 liters which is significantly higher than the .05 and .02 that he has been on the last two days. It is also much higher than the percentage of oxygen he has been getting which is between 30% and 50%.

During the conversation, he gave the impression that Henry was going to be going home in very short order. The main concern here is that he is having brady episodes very frequently. We have been told that he can't go home unless he has gone at least 5 days without a brady. Erenberg gave the impression that he would be going home regardless of this and that he wanted him to go home without monitors so we wouldn't know when he was having one of these episodes.

Thankfully it seems this was a misunderstanding. We talked to Moe Kane, one of the fabulous nurse practitioners in the NICU, and she said that he will not be going home while having brady spells. She confirmed with Erenberg that he was really only making changes to the oxygen.

We talked to one of the other parents who has been there for a long time that we see at all hours of the day and night. He had been told by the nurses that Dr. Erenberg had a bad bedside manner. The nurses were actually curious to see how this parent and the doctor got along because this parent is not shy in telling the doctors his opinions on his sons care and the nurses could see a train wreck coming when the two of them first interacted. We'll have to see if anything comes of this.

One good thing Erenberg has done is to order a ph probe for Henry. This will go down his nose and hang out in his esophagus and read the ph levels. This will give them confirmation as to whether Henry has reflux or not. All the nurses and nurse practitioners have said he has classic reflux which is extremely common in preemies. Dr. Erenberg said that reflux and brady episodes are not related. This was a bizarre statement as it goes against what every other person we have talked to has said and seems to contradict what we see everyday as we watch him have these spells. Depending on the results, it might affect the decision to put him on medication for the reflux or if they do something like put him in a special bed and sling that can tip him more upright. Of course if it shows he does not have reflux at all, then I don't know where that leaves us.

I finally got a good nights sleep last night, or good days sleep since I went to bed around 5am and got up at noon. Kate went in to see Henry earlier today. I'm going to try to drag her away to go see a movie this afternoon while Grandma is there watching Henry.

Pediatrician Found

I spent last night at the hospital. Jeff stayed until 4AM. I left around 7:45AM. The nursing went well. I discussed bottle feeding with Holly and Joyce. As much as I would have loved to see Henry take his first bottle, I asked them to bottle feed Henry if he got hungry while I was gone. I really don't want to see another NG tube in Henry's nose if it can be avoided.

I returned to the hospital at 10:15AM. My dad was holding Henry. In my absence, Joyce had given Henry his first bottle! He took 33 mls. My dad held Henry for well over two hours.

Jeff picked me up at 11AM. We went to Catalina Pediatrics to meet with Dr. Sosan Moussa. She was great. When we left the meeting, Jeff said, "Shall I assume that we've met our pediatrician?" She felt like a good fit for Henry's (and our) needs. Not only does she currently have a couple children who were 24-weekers under her care (the kids are now six year olds from different families), but she also had 33-week twins (one of whom was very, very small). So she knows the problems with extremely low birth weight children from both a clinical and parental standpoint. She spent a while with us. The meeting wasn't rushed, which was nice.

We went back to spend time with Henry in the afternoon. Henry had had a 40 ml bottle at while we were at Moussa's office. Later in the day, Henry had a brady for Kathy.

The tone of the NICU has gone from very busy to super crazy busy. A new baby moved into the slot right outside Henry's room last night. I'm no neonatalogist, but it looks like he or she has gestational diabetes. The baby was born at 10 lbs. Today, there were two more new admits to Pod Three. And, the commotion in Pod Three is extraordinary. Looks like one of the new admits is full-term and one is very small. All three of the admits from yesterday and today are on warming tables, which take a fair amount of room. It was so crazy in Pod Three earlier today that it almost felt like being in Pod One (the room for the very, very sick babies).

Jeff left at 5:45PM to go and take care of the dogs. My mom and sister Carolyn visited in the late afternoon. Henry was upset right before shift change. Kathy helped me settle him down, so that I could have dinner with my family at Lovin' Spoonfuls. Carolyn is leaving for Washington in the morning, so it was the last time I'll see her until Thanksgiving. Henry was still fussy before I left for dinner, but I knew that Kathy would make sure that he was fine. Kathy, Joyce, and Holly are going on vacation. Joyce will be back Sunday. Kathy is on-call on Saturday, but I suspect that she's hoping that she can actually have some R&R.

After dinner, Jeff and I went back to the NICU. Kathy weighed him at 1910 grams (a 20 gram loss from the previous night). Henry was asleep despite the commotion in Pod Three right outside the isolation room. Then, a person came to do Henry's hearing test. By this time, he was waking up. He has to be asleep for the test to take place. Long story short, she was unable to give him the test because he was awake and upset. I tried to nursing him after but he was way too upset to nurse. Because I had only had about 45 minutes sleep in the past 24 hours, Jeff sent me home. He is with Henry now.

Rooming In

The preliminaries, Henry gained 10 grams today and weighs 1930 grams. I believe we missed blogging on Tuesday when he weighed 1920. Joyce/Kathy/Holly were his nurses.

Yesterday and today has been an experiment. Kate is rooming in at the hospital to try to make sure that Henry is able to breast feed well enough so that he can start bottle feeding without worry that he will then reject the breast. The bottle is apparently much easier to nurse from. This causes some babies to only feed from the bottle, especially if introduced to the bottle first. Lazy little buggers.

The overall goal is to try to manage his reflux. Since breast feeding his number of reflux and brady episodes have dramatically increased. One thought is that the tube going down into his stomach is holding open the connection between the esophagus and the stomach which allows stomach contents back up into the throat, reflux. If he can be fed via the breast and bottle then he won't need the tube into his stomach anymore.

It is not certain that this will fix the problem but hopefully it will lessen it. At this point when he is fed via the tube that takes 30 minutes. Then he has to be held upright for about 90 minutes to prevent reflux which can lead to bradys. So then he has about 1 hour left in which he can lay down in the crib and get some rest. He does rest while being held but it is hard to say how well he is sleeping in any position right now. Not to mention that we feel like we are trapped in an endless cycle of feeding and holding.

So far the experiment is going ok. He is breast feeding well. Kate and I both feel he has the hang of it enough to try bottle feeding. So far we have not tried bottle feeding and I'm not sure when we will.

On the down side he is still having the bradys. He had one group of episodes this afternoon where we had to put the oxygen mask on 3 times in about 30 minutes because his oxygen saturation's got so low after a brady. Later we had been holding him for about 90 minutes and I put him down to change his diaper and he had a brady within about 5 seconds of being put on his back.

If this continues then he will likely be evaluated for possible medication to prevent the reflux. We've heard different stories of what is considered a large number of bradys and when reflux medication is prescribed. The new attending doctor even told Kate today that reflux is not related to bradys. That kind of blew our minds after every nurse and nurse practitioner has said they are and by observation it seems blatantly obvious. We would like to keep him off any medication if we can, that is why we are doing this experiment. However, it might be necessary to allow him to get decent rest. If he can't get a good nights sleep then it is harder for him to grow and growing is the cure for all that ails him at this point.

Another alternative is something called a Danny Sling. It is some contraption that allows them to tilt him at a greater angle in his bed without having him fall out. Next best thing to holding him upright but it looks rather uncomfortable.

On a lighter note, Kate and I had been concerned about the lack of response to his alarms going off. With the increased bradys we wanted to make sure that he wasn't left without oxygen for extended periods of time. So last night they setup a baby monitor for his room so the nurses in the pod could hear his alarms better. Well of course Kate and I are chatting away when we realize that anyone out in the pod can hear what we are saying. Recapping our conversation we realize that we had a few embarrassing quotes like this one:

Kate: "I'm tired of being naked all the time" (referring to breast feeding)
Jeff: "Kate Kenski, all naked all the time!" (in my best radio announcer voice)

There were a couple more but I'm too tired to remember them now. If Henry ever reads this I'm sure he will be horribly grossed out by his crude parents.