My apologies to all who were concerned by the lack of updates over the first three days of November. I've just been very tired and, by the time we got home, have only had the energy to post photographs.

• Lyle is still looking very puffy and his skin is quite red. It's kind of interesting. He looks like a little term baby now. All pudgy. I know the weight gain is artificial but it shows us what he will look like for real in a couple months.
• He's still quite sore. You can tell because he grimaces with pain when Paloma lifts his butt to slide in a clean diaper. We try to do it gently and pause often to allow him to recover. He shows his displeasure by de-satting and setting off alarms. It's the only way he can "talk" to us.
• So many medications! Today they added Dopamine. Just a small dose. It helps renal function. This is in addition to Lasix, the diuretic he's getting four times a day.
• Lyle's still getting morphine every two hours. I'm so proud, I told Paloma, we have our own little drug addict. She punched me.
• We asked Cristine, his night nurse, if Lyle could get physically addicted. She said that he could. When they stop the morphine they do so very gradually to minimise the problems of withdrawal. They also keep a very close watch on him and if he shows signs of not responding to the morphine or needing more of it to stay comfortable then he is addicted and needs to be gradually weaned.
• So, our boy is slowly healing. It was a big surgery and he needs time. It's hard to see him looking so hurt even though we know that it was something that had to happen.
• At one point, while we were watching, Lyle pitched a total fit for no apparent reason. He just started squirming and gagging and he turned very dark red. All his alarms went off. We held his head and legs to comfort him and watched as his oxygen saturation dropped lower and lower. And then he calmed down and everything returned to normal. It was very strange.

• When I call the NICU at 9:00 Gayle says that Lyle is slowly improving. His ventilator settings are better today than they were yesterday. This shows that his lungs are slowly drying out.
• Gayle explained to me that the fluid Lyle is retaining is mostly water with, perhaps, a few impurities. His blood vessels are still leaky and so the water leaves his blood and collects in his tissues. The albumen should help fix that problem. He also has Ranitidine mixed into his TPN now. This apparently helps to plug up the small leaks.
• Subjectively, I think Lyle is looking better today. His little body is still puffy but his skin isn't the angry red that it was yesterday. He also seems to tolerate having his diaper changed much better. He is peeing a lot (the Lasix and Dopamine ensure that) although his fluid balance is still positive (more going in from his various IVs than he is peeing out).
• His antibiotics have been stopped. I was checking some of Lyle's paperwork when I noticed that one of the doctors had written the order to D/C (discontinue) his antibiotics. The standard procedure is to stop them three days after surgery if there are no signs of infection (which there aren't). I asked Lynda when that had happened. She hadn't even seen the order yet! (It was written while she was off weighing one of Lyle's diapers.) We've definitely been hanging out in the NICU to long.
• Paloma baked brownies for the nurses today. We arrived around 5:00. By the shift change at 7:00 they are mostly gone. The nurses are very appreciative. We had to laugh. Michelle, the resource nurse tonight, was walking by with both hands full when she spotted the brownies. She bent right over them (we thought so she could appreciate the aroma), and then opened her mouth and plucked a brownie right off the plate. Everyone cracked up. Later, on her way past us, she said that if you're going to bake brownies you might as well give them to a woman who will appreciate them, like she does. I agreed. Seeing her do that is like offering a round of applause to the baker.
• It's a quiet evening. Paloma and I sit by Lyle's bedside and talk and read. He seems much more comfortable. Poor little sprog.
• Lyle is ten weeks old today.

• Paloma and I went to register her for her surgery on Monday. She will be having a laparoscopic cholecystectomy. We're hoping that this surgery will not be as invasive as her ovarian cystectomy. The surgeon will make four or five small incisions in her abdomen which will then be inflated with carbon dioxide. He will use a camera to locate her gall bladder (which is, so he says, attached to the liver). Once he's found it he will use a couple of titanium clips to isolate it and then will cut it away. If all goes well, Paloma could be released from hospital as early as Tuesday. She is determined to visit Lyle on Tuesday. Heaven help the surgeon if he keeps her there any longer than she feels is necessary.
• Next Tuesday is also Election Day. We're hoping to get Paloma to the polling station sometime that day so she can do her civic duty. The League of Women Voters of California has a reasonably non-partisan explanation of the issues. As a resident alien I can't vote but I certainly encourage all who can to do so.
• When we got to the NICU this afternoon Karen told us that Lyle may be septic again. His platelet count dropped suddenly overnight and this is often a sign of infection. Since his last set of antibiotics was stopped yesterday there are two or three possibilities. First, he could be infected with a bacteria that was not controlled by any of the three antibiotics he was on before. To try and cover this case he has been started on Vancomycin, a very powerful antibiotic. Second, given his history of getting a yeast infection after his last surgery he could have another one. To cover this case he is back on Amphotericin. Finally, he could be infection free and is platelets are just being used up faster than he can produce them. A blood sample was taken this afternoon and it will be cultured over the next few days to see what develops. Depending on what they grow one or both of these medications will be stopped.
• You may wonder, as I did, what the effects of starting and stopping all these antibiotic medications might be. I always hear from my doctor how important it is to complete the whole course of treatment when an antibiotic is prescribed to help prevent the evolution of a resistant strain of bacteria. Isn't Lyle in danger of having that happen to him? Dr Hintz assures me not. The difference is that when you or I have an antibiotic prescribed it is, usually, because bacterial presence has been detected (i.e. you have a strep throat or an ear infection). In this case completing the course of treatment is imperative even if you are feeling better half-way through it. In Lyle's case he may or may not have an infection. They don't know yet but have started the treatment now rather than waiting for him to get really sick. If he does not have an infection then there is no harm in stopping the treatment.
• Dr Hintz was wonderfully supportive and patient in answering all our questions this evening. It's frightening to think of Lyle having yet another infection but it sounds to me like the right things are happening to treat it.
• Unfortunately, we got more bad news this evening. Dr Gaynon examined Lyle's eyes again today and his ROP (Retinopathy of Prematurity) has progressed to Stage 2 in one eye and Stage 3 in the other. He is still "pre-threshold" which means that no treatment is necessary just yet other than keeping the light on over his bed 24 hours a day and keeping the oxygen level in his blood between 98 and 100%. Even at this stage the ROP could reverse itself but if he crosses the threshold then some intervention will be needed to prevent his retina from detaching and leaving him blind. The treatment is laser surgery. The areas of his retina which do not have blood vessels will be cauterised to prevent the growth of new ones. This could leave him with little or no peripheral vision. We're definitely hoping that it will reverse itself.
• Other than those little details, Lyle is fine. He's still very puffy but is peeing just fine and he seems quite comfortable. He still grimaces in pain when he's moved for a diaper change but he recovers quickly. His ventilator settings are still pretty good although he's currently getting a bit higher level of oxygen to keep his saturation level high.
• For dinner tonight we walked over to the Stanford Shopping Mall. We had soup and a sandwich at Boudin Sourdough Bakery and then browsed through a couple stores. After all the bad news from earlier it was good to have a break from the NICU.
• We spent the rest of the evening chatting with Karen and Dr Hintz and anyone who stopped by to check on Lyle. It seems that all the nurses know him and are interested in his progress. We're certainly not lonely when we're visiting him.

• First of all, many thanks to Robert and Dave & Krissen. Paloma has been pumping out milk for over ten weeks now and the little five cubic foot freezer which we thought we'd never fill is completely full. Today I started calling friends to find someone with a freezer where we could store some of this bounty until Lyle can actually use it. Robert graciously said that we could use half of his tiny fridge-top freezer. Dave & Krissen have a small stand-alone freezer (mostly empty) which they said we could use. Tomorrow morning we will pack up a box of Paloma Farms Frozen Whole Milk and take it over to Dave & Krissen where it can wait for Lyle. With luck he could start on his feeds sometime this coming week. The indications are fairly positive so far.
• And what, you may wonder, are those indications? Well, every couple of hours his nurse has to flush out his stomach with normal saline. This involves a big syringe which is filled with saline. This fluid is then injected into his stomach via his nasal-gastric tube. Then the contents of his stomach are sucked back out into the syringe. When Karen did that this evening all she got back was a bit of mucous. This is good.
• Lyle seems much more comfortable today. Even changing his diaper doesn't seem to bother him very much. His last blood tests showed a normal platelet count (over 120) and a normal hematocrit (around 40, this is the percentage by volume of red blood cells after centrifuging a blood sample). This is also good. He actually received two transfusions of platelets yesterday and that they have not since been used up or destroyed is yet another good sign. The only test that wasn't quite normal was for potassium. It was quite low so he will be getting some more later tonight. This is just a result of his fluid balance being off-kilter. It's getting Lasix four times a day which does this.
• This was a big day for Lyle (although he seemed unfazed by it all). He got to meet his maternal grandmother. Toshiko drove over from her home in Nevada to be with us for the next six or seven days while Paloma is recovering from her gall bladder surgery. As soon as she'd arrived we headed for the NICU. It was a long day of driving for her. The trip from Nevada took seven and a half hours. Add an extra two hours to that for the round trip to Stanford and you have the makings of an epic journey.
• Then, to make the day even fuller, Christine (Lyle's first visitor) made a repeat appearance. She said that he had grown a lot and that he was looking very good. Her son, Raffy, and I talked about skiing and scooters and motorcycles and other subjects dear to the heart of an eight year old while Christine was visiting Lyle.
• Karen gave Paloma a pep-talk about her milk production. Paloma has been feeling discouraged lately since it seems like Lyle will never get to use any of the milk she's been producing. Karen said that none of the milk she's saving should go to waste. Once Lyle starts on solid foods (like rice cereal) she can mix it with the frozen breast milk. That Paloma's milk supply is so good after two and a half moths of stress is a tribute to her mothering ability. Karen is a big fan of breast feeding. She advocates continuing for two or three years if possible. She even said that biting is not a sign that the baby needs to be weaned. You can train your baby not to bite and she gave us a few tricks to try. She really applauded Paloma's determination to continue pumping. It is a huge investment in time and energy and she continues to do an amazing job. Not only does her supply show no signs of drying up but it actually seems to be increasing.
• Karen also warned us that when they do start feeding Lyle they may begin with Pregestamil. Not to worry, she said, he will get breast milk eventually. The problem is that little research is done to show that breast milk is better for babies after surgery than formula. No one makes any money off breast milk so the studies that are done tend to focus on which formula is better. The makers of one brand are more than happy to fund research which shows that theirs is better than the other brands. Those studies never include breast milk. We will push for Lyle to get the best stuff.
• After we got home Paloma called the NICU to see if there were any results from Lyle's blood culture. So far there are no signs of anything growing in there. I'm not sure what this means. If they culture his blood for another two or three days and nothing shows up the question of why his platelet count took a nosedive remains. It would be great if he didn't need the full course of amphotericin. It's got the potential for some pretty serious side-effects. Actually, I forgot to mention yesterday that one of the potential side-effects of antibiotic use is deafness. Poor little Lyle, he's not even three months old yet and already two of his five senses are threatened.

• Julie, Jeff and Isabella dropped by this morning with a gift of food. Julie made us a huge batch of soup. It was really good to see them again. Isabella is ten months old now and has grown so much since we last saw her.
• Then Paloma packed up a five or six bags of frozen milk and we went to Dave & Krissen's to drop them off.
• We arrived at the NICU just in time to meet Pearl, his nurse that day, before her shift ended. She told us that Lyle's urine had cultured positive for yeast and that the secretions from his lungs were showing signs of a bacterial infection. Karen later told us that it really didn't mean much to have the yeast in his urine. That could just be a sampling error. All humans have yeast growing in their groin area and getting a clean sample of urine is almost impossible. In any case, the amphotericin will take care of any yeast present. The bacteria in his lungs isn't too worrisome either since he's getting two antibiotics: vancomycin and cefotaxime.
• Other than the afternoon was kind of boring. I hate to say it but time really dragged while we were sitting by Lyle's bed. I read some more to Paloma but I could tell she was having a hard time staying awake. Lyle was adorable but he mostly slept. Around 5:00 we decided that some fresh air was in order so we went up on the roof and watched the sun set. The sky was beautiful, suffused with a wonderful pink glow.
• Lyle is looking much better. It seems to me that some of the swelling has gone down and his colour looks good. He is also in less pain now. They continue to decrease his morphine dose although he still gets it every two hours.
• On returning to the NICU I made Paloma read to me (I know, I know, I'm a cruel man but I know that if I read some more to her she'd go to asleep and fall off her chair). Time passed.
• We finally left at the 7:00 shift change and returned home to a meal of chicken donburi prepared by Paloma's mom. Service with a smile.
• Before going to bed we called the NICU to find out how Lyle was doing and Karen let us talk to him. It was kind of silly and kind of funny. She held the phone up to his ear and let us say hello. She said that he made an initial effort to open his eyes but that eventually he gave up and went back to sleep. He's not even a teenager yet and already he's ignoring us!
• Tomorrow is Paloma's surgery. It almost didn't happen. When we registered her last Friday they took a blood and urine sample. When we returned home yesterday evening we found a message from her surgeon saying that there was a problem with her urine. It turned out that the lab had found epithelial cells in it and since this could be a sign of a bladder infection the surgery might have to be delayed until it could be treated. Before heading up to the NICU we stopped at Dominican so she could leave another sample. Paloma called her surgeon when we got home tonight and he said that the new sample was clean. No signs of infection and so he had a green light for the surgery. Whew. We just want to get it over with. Paloma is NPO at midnight (nothing by mouth, no food or drink).

• Toshiko and I got Paloma to Dominican Hospital around 8:45 this morning. The same nurse who prepped her for the cystectomy last June was there again giving her an IV and some pain medicine to prepare her for the anesthesia. It's nice to see a familiar face but kind of sad that we're seeing them in hospitals all the time.
• The nurse took Paloma down to surgery at 10:30. After they'd taken her in I went to the nursery to say hello to any of the nurses and doctors we might know there. One of the nurses paged Dr Ismail who came right down to see me. He was really pleased to hear of Lyle's progress and had some very positive things to say. He felt that Lyle would have no problems from the brain bleed. He said that since there were no signs of hydrocephalus now that there wouldn't be and that Lyle's development should not be affected. He was very glad to hear that the reanastomosis had gone well and hoped that they would be able to start feeding Lyle soon. The sooner the better from his point of view. He would love to have Lyle at Dominican to fatten him up before sending him home with us. He is such a nice man. I can see why all the nurses and doctors regard him so highly. He said that he will stop by and visit Paloma sometime today.
• Then I went to work. I'm sorry to admit it but I just couldn't sit around the hospital waiting for the surgery to finish. I needed to have something to do and work provided me with that. I know it's not very romantic or even very supportive but as soon as she's been taken to her room I will go and see her. I promise.
• Paloma's mom called me around noon to say that the surgery was over and that it had gone well. Her surgeon said that she could even come home tonight if she felt up to it. Paloma was really hoping that would be the case.
• Gayle tells me that Lyle is doing well. She hadn't seen him since last week and she says that his edema is noticeably less than it was. Unfortunately his platelet count has dropped again so there is still some infection that he's fighting. They just don't know where it is yet. He was given some more platelets to help him fight some more. The other thing which is getting notice these days is a raised mark on his foot. I haven't mentioned it before (I think). It looks kind of like a blood blister on the sole of his left foot. But it hasn't gone away like a blood blister should. It has been there for at least two weeks now. Maybe even longer. His doctor finally decided to have a consultation with a dermatologist. That should happen tomorrow. Hopefully it is just a hemangioma (a kind of birth mark consisting of a raised region of skin containing a dense mass of dilated blood vessels).
• After work I went to visit Paloma at Dominican. She has four nice, neat little incisions. She's currently getting IV morphine to control the pain. She even has an override button on the auto-syringe which allows her to increase the dose temporarily. How do you like that? Two happy juice users in the same family. I made her eat her dinner which consisted of clear fluids: chicken broth, cherry Jell-O, cranberry juice and tea. Needless to say she wasn't too excited by it.
• I just finished talking to Lynda at the NICU. Some pus has been oozing out of Lyle's incision site. They have sent a sample of it off to be cultured and have changed his antibiotics. He's now getting something called Meropenem. It's apparently used after abdominal surgery to control various bacterial infections. Other than that she said that he's doing well and resting comfortably. We'll know more once they've cultured the pus to see what kind of organism we are dealing with.

• In the end Paloma was persuaded to stay at Dominican overnight. Her nurse said that if she was in pain or had an attack of nausea they had medications to treat her right then and there. At home she would be on her own with whatever problems developed. I sat with her and read her some more of The Golden Compass before heading home around 9:30. The night nurse turned off her morphine drip around 4:00 a.m. That stopped the queasiness she'd been feeling. Toshiko and I went to rescue her at 8:45 a.m. The nurses there were so nice. They all seemed to know about Lyle and wished us well.
• Paloma voted today, did you? She walked from our house to the polling station. A very good effort on the day after surgery.
• When we called the NICU this morning Gayle told us that the surgeons are finally worried about Lyle. He has taken longer to recover from the surgery than they'd like. It's very strange to hear one day that all is well and the next that the doctors are worried. The current thinking is that he has a pocket of fungal infection hiding somewhere in his body. A lot of tests have been ordered to see if it can be found. At some point today Lyle will have ultrasound tests of his heart, brain and other internal organs.
• Toshiko made us dinner before we drove up to the NICU. It was very nice but I found I couldn't really enjoy it as much as I would've liked. I was worried about Lyle and felt the pressing need to see him, to be reassured about his condition. We arrived around 6:20. It was just enough time to check in with Lynda and find out what had been going on. The surgeons have been squeezing pus out of Lyle's incision. They have made two small cuts in it and placed cotton strips there to drain off the infection. I have posted a picture of this in the album called Lyle Bartley Vachon, Part 11. Be warned, it's not a pretty sight. However, the drains seem to be working. The angry red areas around the wound are almost gone.
• Just before the shift change Carol Lin, MD, one of the doctors helping care for Lyle, came by to talk to us about his condition. The preliminary results of the ultrasound showed that his heart was clear of infection but that there was yeast in his kidneys and that it had seeded to form little fungal balls. This explains why his urine cultured positive for yeast. He will now get a full course of treatment with amphotericin. That means at least 21 days. Actually, he's been on it already for four or five days so I guess that means he'll need another two and a half weeks. The scary part of this drug is that it can be harmful to the kidneys too. So the disease and its treatment can both have a negative effect on the same organs. There will likely be some scarring of his kidneys from the yeast. She said, however, that our kidneys are over-designed. We really only need ten percent of their function in order to stay healthy. Still, I'd hate to see his capacity drastically reduced so early in his life. How's he going to enjoy drinking to excess when he's a college student if his kidneys are damaged now?
• She also told us that the ophthalmologist had seen a hemorrhage in one of Lyle's eyes. Not, apparently, in an area already affected by the ROP. She said that there were hundreds of reasons for babies like Lyle to develop hemorrhages there but one of them could be a yeast infection. No treatment was specified. Little bleeds like this one generally clear up on their own.
• Finally, as if this wasn't enough, the bacteria growing in the fluid of his lungs turns out to be our old friend enterobacter. Dr Lin said to think of it as pneumonia. The new antibiotic, Meropenem, is already working to clear his lungs and he seems to be responding well.
• Unfortunately, a yeast infection after surgery is not uncommon. What happens is that in the normal course of events the bacterial flora of Lyle's body kept the yeast in check. After surgery he was given three different antibiotics which killed off all the normal bacteria. This allowed the yeast a chance to get a foothold. Sucks, eh?
• But, you know, Lyle looks pretty good despite all this. The edema continues to go down. His lungs are much clearer and his ventilator settings are improved again. We spent a very quiet evening absorbing all this news. After the break Lyle was very much awake and alert. He was looking around and holding on to our fingers and just generally being as cute and engaging as a baby is supposed to be. He is my joy. Being with him calms and soothes me.
• Just before we left one of the surgeons came by to talk to us. He said that the infection in Lyle's belly was in the space between the muscles and the skin and so was not too worrisome. If it was in the abdominal cavity then it would be a big deal. He felt that there was probably some bacteria on Lyle's stoma (a not unlikely occurrence since it was an open end of his intestine that was protruding through a hole in his abdomen) which got inside him during his surgery. The drains they'd installed and the antibiotics will take care of it in time.
• The other big change is that Lyle's morphine orders have been rewritten. He is now to get it only as needed. And the good news is that he doesn't seem to need it very much. I was so careful when I changed his diaper tonight and he just watched me with a benign look on his face.

• You know, Lyle looked really good today. He was very comfortable and was obviously making an attempt to be alert for our visit. When we arrived at his bedside his eyes were open wide and he was looking around with interest. He even smiled. He just seems much better. His edema is less and he isn't as stiff as he was. He can move his little arms around now and he's taking advantage of this freedom to grab at his nasal-gastric and ventilator tubes. He is surprisingly strong. It looks like he is more than able to defeat the tape holding the tubes in place. I think his secret weapon is saliva. He produces such vast quantities of it that mere tape doesn't stand a chance.
• His ventilator mode has once again changed. He is now on pressure assist. This means that he does all the work of initiating a breath, at which point the machine helps him out by puffing a bit more air into his lungs. Before the machine was doing all the work: deciding when he was to breathe and how much air he was to get. He really likes this change. They've been able to decrease his extra oxygen requirement and the carbon dioxide levels in his blood are gradually decreasing. He also seems much more relaxed.
• Kathy let Paloma and me bathe him. He hadn't really been washed since before his surgery and he needed it. He was smelling kind of funky and had crud all over his skin. The first big task was to wash his neck. You wouldn't believe all the stuff hiding in the folds there. I'm sure it was a major relief to him to have that taken care of. And, you know, despite all the manipulation we put him through he was as happy as a clam at high tide or, for the benefit of our readers from the Commonwealth, as happy as Larry. He watched us with great interest and didn't once de-sat or otherwise indicate disapproval with the process. I apologised to Kathy for taking so much longer with the task than she would and she said that it was nice for Lyle to have so much gentle attention focussed on him. She said it was like a massage for him and would leave him relaxed and supple.
• The other big excitement was the discovery of poop in Lyle's diaper while we were washing him. This is what we've been waiting for. Yesterday he got a glycerin suppository and it finally worked. We were also able to hear bowel sounds. Kathy let me use her stethoscope to verify the noises. There was much jubilation at his bedside. Funny the things that bring us joy these days. What this means is that he could start being fed tomorrow. Now that would help make our trip to Mendocino relatively guilt free. We were hoping that he would be doing well enough that we could relax and enjoy the weekend.
• We also had a chance to discuss Lyle's situation with Dr Hintz. She is really pleased with his progress. The medications he's on are fighting the infections and he is looking much better as a result. I asked why he was being given Meropenem which is usually reserved for drug-resistant bacteria. She said that was to keep the number of medications he was getting to a minimum. If not Meropenem then at least two other antibiotics would be needed. I also asked her if it was possible to get drug resistant strains of yeast. After all, Lyle has been on Amphotericin twice before. Could these previous uses have engendered a resistant form? She said that she'd asked the Infectious Disease people the same thing and they said that the yeast in question, Candida, never develops drug resistance. (Paloma told me later that when Dr Hintz told us the name of the yeast all she wanted to do was break into a rousing chorus of "Blame Candida!")
• We left at the shift change and dashed home to have dinner. We have slowly been eating our way through the soup left us by Julie and Jeff last Sunday. It was delicious.

• This morning Gayle told me that the surgeons were pleased with Lyle's bowel movement and that they might even start him on formula today! Lucky guy. She agreed with me that formula couldn't possibly be better for him than breast milk (of which Paloma now has over twenty US gallons ready and waiting) but those surgeons just want to be extra cautious when re-introducing food into his stomach. The idea is just to stimulate those gastric juices, get the whole mechanism primed and ready to go.
• Michelle, Lyle's nurse when we arrived this afternoon, told us that although the surgeons had ordered feeds to start the pediatricians had decided against it because he was still having secretions from his NG tube. Plus he is coughing up a lot of mucous into his ET tube where it sits looking most uncomfortable. She thought it would be better for all his excess secretions to stop before he got fed. Michelle found one of the medical students familiar with Lyle's case and had him bring us up to date on the latest happenings. Lyle did have another ultrasound of his kidneys today and apparently there was no sign of the fungal balls. Yay!
• We knew this would happen sometime and we knew we'd just been pushing our luck but our nurses have been so nice about it that it was kind of shock to have it happen. Michelle very politely but very firmly informed us that we could only have two people at Lyle's bedside. She explained that one of the parents had earlier had her entire extended family visiting her baby and it was such zoo that she'd asked them all to leave and, in order to be fair about it, she now had to ask one of our party to do the same. Paloma went first. She had to pump anyhow and it was a good opportunity for her to do so.
• Then it was my turn. I went and walked around on the roof for a while and then decided to investigate a stairway that we've seen leading down but never tried before. I ended up in a marginally familiar part of the hospital (near where we found Lyle after his GI tract study a couple weeks ago). I then made my way up to the library on the third floor and passed the time with a magazine… until I saw a familiar face. It was Juan Carlos Rodriguez. He's currently a resident rotating through all the departments in the hospital. He now happens to be in the Renal (of or relating to kidneys) Department. When he heard about the fungus in Lyle's kidneys he thought that he might actually be called in to look at Lyle again. He told me that the interpretation of ultrasound images is an imprecise art and that the initial finding of fungal balls might have been an imaging artifact. Considering how small Lyle is and hence how small his kidneys must be this wouldn't surprise me at all.
• While I was away Christopher Barry, MD, the surgeon who talked with us the other night visited Lyle and told Paloma, "as you can see Lyle is currently getting small amounts of formula dripped into his stomach." Paloma looked at Lyle and then back at Dr Barry. After getting the explanation of the miscommunication from Michelle he said that the surgeon's orders to feed still stand and that he would consult with the pediatricians to make sure that happens. So, soon maybe.
• Lyle is eleven weeks old today.

Help: We tried taping that most recent episodes of Buffy the Vampire Slayer and Angel last Tuesday but something went wrong and we only got the first half hour of Buffy. If any of you, my faithful readers, happened to tape those episodes could you let me know? Thanks.

Note: Paloma and I are taking a weekend off. We will be in Mendocino Friday, Saturday and Sunday nights. I will update this page early next week. Probably Tuesday night.

• Paloma's mom left this morning. She was up way early and, by the time I dragged myself out of bed, had already packed her truck and cooked us breakfast (French toast, my favourite). She leaves us with more organised cupboards and a huge supply of frozen food.
• Paloma and I arrived at the NICU around noon. The plan was to spend a couple hours with the boy and then leave early enough to beat the rush hour traffic.
• Lyle's nurse this afternoon is Renee, a traveler from San Diego. Following the surgeon's orders, she started Lyle on 1 cc of Pregestamil per hour this morning. As he shows that he can digest this gunk they will gradually increase the amount. Every three or four hours he gets the contents of his stomach sucked out so they can see that he is actually digesting it. Paloma, Renee and I all agreed that breast milk was the best food for a baby so why, I asked, isn't he getting breast milk. Renee said that she'd asked two doctors and they didn't want to change the surgeon's orders. I said, bring a doctor over here, we'll ask again. Then, when Paloma and I returned from pumping Renee told us that she'd asked another doctor whether she could give Lyle breast milk and this doctor said yes! Joy! She wrote out the order. While we watched Lyle, Renee went to the freezer and retrieved a small bottle of Paloma's finest vintage for our baby boy.
• Lyle looks good. His incision is healing quite nicely (although the scab is quite horrendous). He seems comfortable and is alert. He is still having problems keeping his platelet count in the proper range. Once the infection is more under control this should stop being a problem. He was getting another blood transfusion when we arrived.
• Dr Ismail stopped by for a quick visit. He apologised for not visiting Paloma in hospital earlier this week. He'd been called away to an emergency at the Watsonville Hospital. He was very pleased to hear that Lyle was getting breast milk. He said again that he can't wait to have Lyle at Dominican. Lyle needs to get off the ventilator and the TPN before that can happen. If he tolerates his feeds this could be in a couple of weeks.
• So much for my idea of beating the rush hour traffic. Getting through San Francisco was pretty quick and surprisingly easy. 19th Avenue is usually a mess but today the traffic was moving well. Unfortunately, it then took over two hours to drive the 50 miles from the Golden Gate Bridge to Santa Rosa. Stop and go almost the whole way. At one point I looked over to Paloma and asked her to remind me why we'd thought this getaway would be relaxing.
• We finally arrived at the Inn at Schoolhouse Creek around 8:30 (we'd left the NICU around 2:00). Over six hours to drive about 200 miles. Once there, however, I was able to relax. Penny, the innkeeper, offered us a glass of wine. Normally we don't drink much alcohol but this just sounded right. It turns out that we were last here on the 15th of November of last year. Almost a year to the day.
• Our cottage (Cypress) is very cute; very small but with all the mod cons. Around 9:30 we went up to the hot tub and I soaked for half an hour. Paloma is still not allowed to have a bath for fear of getting an infection in her incisions. Actually, it was more like a lukewarm tub than a hot tub. Something had gone wrong with the heater and the tub's temperature was only around 90 F instead of the advertised 102 F. Still, it was nice to be outdoors looking up at the night sky.
• When we called the NICU Karen said that Lyle was tolerating his feeds. "Tolerating" always sounds slightly negative to me. As in, "he doesn't really like it but he endures it." In medical terms it is entirely positive. It means that his feeds aren't making him sick. His body is handling the food in an appropriate manner. We're just waiting for that first breast milk powered bowel movement. Karen let us talk to Lyle but she had just given him some morphine and he pretty much slept through it (foreshadowing his teen years? Uh… the sleep part, not the drugs).

• We staggered out to breakfast around 9:30 this morning. Penny really makes a nice breakfast. Very ambitious. Much more than just tea and muffins. This morning it was a bell pepper frittata and herb scones.
• Pearl is Lyle's nurse again this morning. She says that he is getting 2 cc of breast milk every hour and is still tolerating it. Other than that he is resting comfortably.
• Paloma and I went in to Mendocino around noon and spent a two or three hours shopping. More Christmas presents. That sort of thing. Very low key indeed. We decided to eat in our cottage tonight and so stopped at a local health food store to pick up some supplies.
• You know, it was beautiful and sunny out but we returned to our cottage around 4:00 and didn't leave it for the rest of the day. The cottage has both a cooking stove and a wood burning stove. We started a nice little fire in the latter, heated up the soup on the former and spent the rest of day in sloth and indolence. Paloma worked on a jigsaw puzzle and I read a bit.
• When I called the NICU around 10:00 Karen told me that Lyle had a bowel movement earlier in the afternoon, before the start of her shift unfortunately. Paloma and I toasted this singular event with the wine Penny had left in our cottage to welcome us back (Husch Vineyards Innkeeper's Reserve Chenin Blanc). She also said that he is sucking his thumb. She put his hand near his mouth and then heard him making sucking noises. When she checked he was working away on his thumb like he was born for the task. She has written THINK EXTUBATION in big letters on his chart. Just to give the doctors a push in the right direction.
• Karen told us that the surgeons had come to check on Lyle and had not rescinded the breast milk order. They said he could continue as long as he has no aspirates. They told her that they like to start babies on Pregestamil because it has less fat in it than breast milk and when they start feeding a stomach that has had nothing much in it for months they don't want to challenge it right away with lots of fat. If Lyle starts showing signs that he is not digesting Paloma's milk then they will switch him back to Pregestamil for a while. At least now we have a comprehensible reason for the decision to start him on formula.
• The hot tub was hot tonight when we got out there around 10:30. Soaking under the full moon: a nice end to a relaxing day.

• Lyle's nurse this morning is Gayle. She's one of his primaries. We really like her progress reports. She tells us everything and never minds explaining what anything means. She told us that Lyle's feeds were temporarily stopped for four hours this morning because a large volume (12 cc) of undigested breast milk was found in his stomach. The surgeons were consulted and they were unconcerned. The thing is that Lyle's gestational age is 38 weeks now. Close to being term (40 weeks). Really premature babies, the ones whose stomachs really aren't developed enough to tolerate food, do much better with continuous feeds where small amounts of milk are dripped into their stomachs by an auto-syringe. Term babies, on the other hand, do better with a more normal feeding method: they get all their milk at once and are then given a couple of hours to digest it. The milk accumulation actually triggers the digestive process. Lyle being so much bigger now may need the second type of feeding and so finding residuals in his stomach could just depend on when the check is done. Do it before he's accumulated enough and you will find a lot of milk. Do it after and you'll find none. At any rate, he will be started up with 1 cc an hour again later this morning.
• Other than that he's looking really good. Very calm and happy. Gayle says he's a delight to care for. He's got his arms and legs drawn up and crossed. Just like a term baby would. His edema is mostly gone now and so he's much more flexible. And, the big news is that he now weighs 6 lb. 9 oz. None of which is being attributed to excess fluid retention.
• After breakfast, Paloma and I drove north to Fort Bragg stopping at the Mendocino Coast Botanical Gardens. They have 47 acres of gardens stretching from Highway 1 to the Pacific Ocean with paths leading from the one to the other. We spent a couple of hours wandering the paths and admiring the mushrooms and other plants. It would be a wonderful place to visit in the spring when all the rhododendrons are in bloom. It was, actually, quite amazing. The sun was warm and bright and we were able to pretend that we were the only people there.
• Then we went to the Glass Beach. One person's trash is another's treasure and we spent a happy hour or two scouring the beach for interesting pieces of glass. The story is that some years ago garbage was just dumped into the ocean by the locals. Over the years the activity of the waves reduced the glass shards to glass pebbles.
• Finally we returned to Mendocino for some more shopping. This time we were looking for Christmas presents for each other. Common sense prevents me from mentioning my purchases here. Suffice to say they were things that Paloma had indicated liking when we saw them the previous day.
• Dinner was at the Albion River Inn which was particularly recommended by Penny. I wish I could agree with her. The service was inconsistent verging on rude. The salad we started with was wonderful (various types of lettuce with blue cheese crumbled on top and a raspberry vinaigrette). I didn't particularly like my entrée (duck with a mushroom bread pudding). Paloma's was very good (halibut in a pistachio crumb crust). After we'd finished our dishes we were just ignored by our server for fifteen or twenty minutes until we finally gave up on the idea of dessert and left. Of course, we paid on the way out. Still, the whole experience left me kind of cranky. This sort of thing seems to happen to Paloma and me quite frequently. Particularly in the fancier restaurants. My theory is that since we don't take wine with our dinner the servers figure they aren't going to get a huge tip anyhow so feel free to ignore us in favour of other, higher tipping, customers. Or maybe we're aberrant in that once we're done with the meal we like to leave and not linger over a cup of coffee or tea. I don't think we'd return.
• Then it was back to cottage to indulge in more TV. I finally got to see The Terminator. My theory about movies is that explosions = good. There were some darn good explosions in this film. The skeletal terminator at the end of the film was somewhat disappointing but considering the state of the art in the early 1980's it was adequate. All in all an enjoyable show.
• Yolanda is Lyle's night nurse. She said that he is back up to 2 cc of milk per hour and so far no residuals. She gave him a bath tonight. I asked how he liked it and she said not at all. Hmm... she must be doing something wrong. He loved the bath that Paloma and I gave him. Paloma pointed out afterward that those nurses really scrub hard when they're cleaning a baby. We see the newborns in the NICU squalling as the nurse tries to remove all the vernix.
• It was another beautiful night for hot-tubbing. Poor Paloma, she had to sit by the edge of the tub once again and watch me enjoying myself.

• We awoke to rain today. The perfect day to be heading home (well... except for the part about driving in the rain).
• Gayle has Lyle again. She said that he's up to 3 cc of breast milk per hour and is doing just fine with it. Other than that he looks comfortable. His oxygen saturation is good. He's breathing well on his own. The ventilator is set to ensure that he gets at least 30 breaths per minute but he's taking between 40 and 60 breaths per minute on his own and hasn't ridden the ventilator at all.
• We said goodbye to Penny after breakfast (a mushroom frittata today with pumpkin muffins) and packed up all our stuff. We had such a nice time this weekend that we will probably be back in the future. This was the ideal break from our NICU routine.
• Paloma and I decided to stop at the Husch Vineyards on the way past to pick up a bottle of their Chenin Blanc. When we found the place (near Philo on Route 128 through the Anderson Valley) we ended up tasting a few of their other wines and came away with three bottles: a Chenin Blanc, a Muscat Canelli, and a Postre, which is a late harvest Cabernet Sauvignon. Very pleasant and sweet white wines.
• We stopped for lunch at the In'N'Out Burger restaurant in Santa Rosa. We'd spotted it on the way north and decided we had to stop on the way home. It's one of those no frills places. They do burgers and fries and that's about it. As far as I know they haven't even spread out of California. The burgers are good. Well worth a stop (unless you're a vegetarian).
• And then, major disappointment. After making very good time (it took us under five hours to get from Mendocino to Palo Alto, we left at 11:00 and arrived there around 4:00) we were prevented from visiting Lyle until gone 5:00. The doctors rounds had started in Room 4 and they took forever to finish Room 1. Paloma and I sat in one of the alcoves and I read her some more of The Golden Compass. We're nearing the end and it is very exciting. Will Iorek Byrnison save Lyra from the dungeon where she is currently imprisoned? Will the panserbjørne let Lyra take the alethiometer to Lord Asriel (her father)? Don't expect to read the answers to these and other questions here.
• When we finally were allowed into see Lyle we found Lynda looking after him. Paloma asked her if she could hold Lyle. Lynda was willing. Yay! The first time one of us has been able to hold him in over two weeks. Think about parenting under these conditions. Can you imagine not holding your child for two weeks? Go and give your son or daughter a cuddle right now.
• It took a while for Cathy, the respiratory technician, to make it to Lyle's bedside but as soon as she did Lyle was in Paloma's arms again. Boy, did he fuss. If it wasn't for the tube down his throat he would have filled the NICU with his screams. As it was, whenever he cried he turned bright red straining against the tube. Interestingly I noticed that his oxygen saturation improved a lot whenever he did this. It makes sense. The sensor was strapped to his foot. When he made himself turn red he was forcing oxygenated blood out to his extremities. It was quite funny except when I realised that he was upset. He did settle eventually.
• While we were there we had a chance to talk to Christina Anderson, MD and Chris Colby, MD. They are both NICU fellows looking after all the babies there. Christina told us that the plan was to wait for Lyle's next eye exam (scheduled for this coming Friday) and if his ROP has not progressed then he will be extubated. To help control the ROP his oxygen saturation needs to stay in the 98 - 99% range and the best way to manage that is with a ventilator. It's really nice to know that there is a plan and that they are thinking about Lyle's future.
• And then it was time to go home. On arriving, we tried to fit the gallon of milk that Paloma had pumped out over the weekend into our little freezer. No joy. It was full again. I made a quick call to Carol who had said, after our last crisis, that she could fit some overflow into her huge freezer. We'll take some frozen milk over to her in the morning. Then we puttered around and watched some TV (Ally McBeal if you must know, I think it has gone way downhill from when we first started watching it a couple years ago) before heading for bed. I think Tuq was happy to see us. He certainly seemed to appreciate getting brushed and having his toenails clipped. Wouldn't you?

• Paloma called the NICU this morning to find out how Lyle was doing. Gayle gave her usual complete report then told Paloma that she'd just given Lyle some morphine. Not because he appeared to be in pain but because he was just very active. Legs and arms kicking. Like a baby. And she had another baby to attend to and she wanted Lyle to be calm and undemanding. I wonder if they will send him home with some of that stuff? There'll be no using the TV as a babysitter in our house. We'll use morphine instead.
• Carol's freezer is truly enormous. Big enough to hold a body or two. It swallowed up about half the frozen milk we had in our freezer and still looked pretty much empty.
• Paloma saw her surgeon today who said that she was doing just fine and that she didn't need to see him (ever?) again. He said she could peal off the tape holding her incision shut. She did so later in the afternoon and found them almost completely healed. So, she probably could've gone in the hot tub with me over the weekend. Poor thing. We'll have a celebratory soak later this week or early next week.
• Lyle is looking very good. He sucks thumb or, more usually, his fingers. He sucks on any pacifier given him. He even sucks on his endotracheal tube. It is very amusing to watch his little jaws working away at it.
• Lynda told us that he is now getting 6 cc of milk per hour. She thought that full feeds would be 10 or 11 cc. The new order is to increase the volume by 1 cc every 8 hours. This means that he'll be getting 7 cc per hour starting at midnight tonight and will be up to 9 cc per hour by the time we see him tomorrow evening. They have also stopped checking his stomach for residuals. Instead of a direct check to see if he's digesting they will rely on indirect methods. His belly will be measured every couple hours to ensure that he's not bloating. Lynda also measured him from head to foot for us. He's about 17 and 1/2 inches long. Unfortunately, I don't know how long he was at birth so it's hard to know what his growth has been. His weight is still hovering around 6 lb. 9 oz. which is also three times his birth weight.
• I got to hold him tonight. As soon as she saw us Lynda started getting Lyle ready for the transfer. The respiratory technician came right away and so I got a nice long cuddle. We aren't doing skin-to-skin holding just yet. I think this is to minimise the chance of any bacteria on my skin infecting his incision. Better safe than an extra couple weeks of antibiotics.
• Paloma read some more of Where the Red Fern Grows to us. I'm sure this book is a classic and all that but it seems overly concerned with the killing of animals and the felling of trees for my taste. Paloma says it's the relationship of the boy and his dogs which makes the book so worthwhile.
• Dr Christina Anderson stopped by to say hello again today and she said that she had squeezed a little bit of pus out of Lyle's incision and that he'd hardly even noticed her doing so. She said that it could take a while for the antibiotics to take care of all the pockets of infection there. Particularly if the pocket is somewhat isolated from Lyle's bloodstream. Everyone is very pleased with his progress. His belly looks so much better. His scar will likely be a big one but at least he doesn't have to worry about how he'll look in a bikini. Chicks dig guys with scars. Scars and tattoos. We'll look into getting Lyle his first tattoo when he comes home in December. I can just see him as a teenager saying, "You think a pierced tongue is cool? That's kid's stuff. Real men have a section of their intestine removed."
• I asked Lynda if she still had enough bottles of frozen milk to feed Lyle for a while and, after checking, said that we should bring in ten bottles or so. How exciting! This is the first time in several months that we've been able to bring milk from home. Of course ten bottles is only about a day's pumping for Paloma whereas one (4 oz.) bottle is about all Lyle can eat in a day. Still, the change is in the right direction.
• Bummer days. On returning home we found that our VCR had once again refused to record more that the first half hour of Buffy the Vampire Slayer. I suppose that in light of our experiences over the last two and a half months this is a minor setback but still... adding insult to injury or what?

• Terri, the travelling nurse from Denver, has Lyle again today. When we arrived at the NICU around 5:00 she said that she and Lyle had been bonding all day. She seemed quite pleased that it had been a quiet day. Little changes have been made. Lyle is big enough now to maintain his own body temperature so his hot bed has been turned off. Terri had him nicely swaddled and he was doing just fine with that. Get rid of a few more wires and tubes and we can start dressing him like a real baby.
• Paloma held Lyle. I read to them. Nothing big or exciting happened.
• No, I take that back. One of the doctors from the Infectious Diseases Department came by to evaluate Lyle's progress. He said that the first ultrasound from last week which showed the fungal balls in his kidneys was probably an error. No matter how good the treatment fungal balls don't disappear in two days. He said that his department was satisfied that the yeast had been adequately dealt with and they were recommending that Lyle's treatment with Amphotericin be stopped since at this point the risks associated with the drug were higher than the risk of the fungal infection spreading unchecked. He also indicated that Lyle would only need antibiotics for a few more days. These changes will have to be ratified by the pediatricians but we have every hope that they will change his orders tomorrow.
• After dinner on the roof (in a light rain) we returned to find Tammi in charge of Lyle. She wanted to know if Paloma or I wanted to hold him again! This was unprecedented. We were stunned. She explained that he was a big boy now and he was certainly up to being held more than once a day. After a quick discussion we changed our plans to leave at 8:00 and I got to hold the boy. He took the transfer with aplomb.
• Paloma read to us and then dashed off to pump (she'd planned on pumping in the car on the way home but this unexpected development changed those plans).
• Lyle pitched a total fit just before Tammi came back around 8:40 to weigh him and check his vital signs. His face turned bright red and he squirmed around as though trying to eject his endotracheal tube by force of will. I think his lungs were kind of junky and needed suctioning. I could hear him breathing and it sounded wheezy. There might have been other reasons for his straining, read on. Happily, his temperature was good (36.7 C).
• Tammi took off his old diaper and then put the measuring tape around his belly to make sure it wasn't distended. As she did so he let loose with some more pee. I was very impressed at the distance he managed. His stream cleared my arm (thank god) and hit the floor beyond. Tammi very patiently finished her measurement and then changed his diaper yet again. She then went off to get the scale. While she was gone he strained a bit and filled his new diaper with poop. That's my boy! Oh well. She then put him on the scale. He was 3030 grams or almost 6 lb. 11 oz. Finally, before leaving, I offered to change his poopy diaper. As I lifted up his legs he decided that now was the time to vomit. So he did. Stuff coming out of all three possible orifices in the space of fifteen minutes. Not bad. The only downside is that vomiting could be a sign that something has gone wrong in his intestines. They will have to keep a close eye on him and if he shows signs of discomfort or sickness he may get another belly x-ray to check for blockages. This seems unlikely to me since he is still pooping. However, better safe than sorry. I think his belly was full and I put pressure on it when changing his diaper. As discussed before, the stomach works best when it is full enough to begin the process of dumping partially digested food into the intestines. Half an hour later and his belly might've been empty. Tammi said that he didn't look sick (as he would if his belly was tied in knots) and, after all, babies throw up.

• Rebecca gets to look after Lyle again today. She told me that the surgeons are not worried about Lyle throwing up last night. They have decided to keep on increasing his feeds 1 cc every 8 hours. Their theory is to challenge him and see what he can do. He will let them know if there are any problems. When I called Rebecca was in the middle of giving Lyle a sponge bath since he still smelled like stale vomit. There are lots places on him where partially digested breast milk can hide and she was trying to scrub them all.
• His next big challenge is tomorrow's eye exam. Will his ROP be worse, better or unchanged? If either of the last two then he will be extubated. Probably just placed on a nasal cannula. Hope for the best.
• Paloma insisted that I hold Lyle (she wanted to pump before the shift change) so Lynda, Lyle's night nurse again, got him all set up and, with Junn's help, transferred him to my lap. We're still not doing skin-to-skin holding. Maybe when he's been extubated. She bundled him up and then dropped him in my lap. He pretty much slept the whole time.
• Shannon, our social worker, finally stopped by to introduce herself. She took over when Maria left suddenly a couple months ago and except for a couple chats with Fran we've been social worker free ever since. To be honest, I'm not sure I know what Shannon could do for us. If we felt that we didn't have a clear picture of Lyle's situation and progress I suppose she could set up a team conference for us. All Lyle's doctors in one room, ready and waiting to have their brains picked. Somehow I find that thought daunting rather than comforting. I'd rather deal with doctors as they appear at Lyle's bedside. Individually they are all nice, kind and thoughtful people. En masse, I'd be afraid of getting lost in the jargon.
• When it was time to put Lyle back Junn suggested that I could do it myself. He promised to make sure that Lyle's ventilator tube stayed put. So I just stood up, very carefully, and placed Lyle back in his bed. Junn warned Lynda to keep a close eye on me now that I knew how easy it was else I'd be taking Lyle out all by myself.
• After dinner (on the roof again tonight, it was warm and sunny today and so all the benches were nice and dry) we returned to Lyle's bedside to find him covered up with a cute little quilt. Vicky, one of his nurses from a few weeks ago, had made it for him. We both thanked her and I asked when she'd found the time to make it. Didn't they keep her busy enough working in the NICU? She said that she'd made it at night after her children were in bed! Now, if there was any answer calculated to make us feel guilty about the way we spend our free time that was it. It's a beautiful quilt and we're both very touched that Vicky was thinking about Lyle.
• Then we spent a bit more time with Lyle before heading home for a soak in a hot tub at Well Within. This time Paloma got to take part too. The incisions from her operation are completely healed. They're so small and neat it is hard to imagine that they were big enough to get the surgical instruments in and the gall bladder out.
• Lyle is twelve weeks old today.

• I'm so worried about Lyle's eyes I hardly want to call the NICU. Paloma does it while I'm messing around with one of our smoke detectors (despite having a so-called ten year lithium battery installed in it last year it is making the low battery beep and has been doing so intermittently for the last couple days). Denise is Lyle's nurse. We haven't met her before. She has dilated Lyle's eyes and is waiting for Dr Gaynon to examine them. Other than that Lyle is doing well. He hasn't spit up any more milk and is resting comfortably.
• Paloma called the NICU again around noon, before she went out for lunch with Denise (not Denise the nurse mentioned in the previous paragraph but our friend Denise the technical writer). Lyle's eye exam went well and so the doctors have agreed to extubate him. Whew! We'll find out more details when we get there this afternoon. Paloma and Denise had lunch at Mobo Sushi. She brought me all the leftovers.
• Lyle is sleeping peacefully when we arrive. Big changes are afoot. Denise extubated him around 2:00. The doctors wrote the orders right after his eye exam but, she says, he hated the exam so much and fought against it so hard that he was thoroughly exhausted by the time it was all over. As soon as Dr Gaynon left him alone he crashed, fell fast asleep (as who wouldn't) and she felt that he deserved the rest. So rather than stress him out even more she let him sleep. A very thoughtful move.
• The other big change is that he's no longer getting TPN or lipids! Since he's almost at full feeds of breast milk (he's currently getting 12 cc per hour and full feeds for him would be around 14 or 16) he doesn't need much extra IV nutrition. All he's getting now is some sugar water (a 10% dextrose solution with some trace nutrients). This is wonderful news. It means that his liver can gradually relax into normal function and it will eventually remove all the yellowness from his eyes and skin. He looks great. Happy and relaxed. His blood well saturated with oxygen.
• Paloma and I went for dinner at the Long Life Noodle Company & Jook Joint again tonight. The first time in quite a while. We sat at the bar and watched the cooks doing their highly choreographed thing with woks and steamers and cleavers.
• After dinner we stayed late at the NICU and chatted with Paul, Lyle's night nurse again. I asked Paul if there was anything special we needed to know when handling Lyle. He said that as long as we support his neck that he should be fine. He probably can't hold it up on his own yet and if it goes too far in either direction it could shut off his air supply. Just before we left, Paul weighed Lyle. He came in at around 3010 grams. A bit less than yesterday but Paul felt that was because he didn't have the ventilator tube down his throat any more.

• We seem to spend most of our life in the car these days. This morning we drove to Salinas so that I could have a massage (yes, there are masseuses in Santa Cruz but the one who has proven that she can fix me when my back is hurting works in Salinas so we make the drive every other week… it takes about 45 minutes). After filling up there on cheap gas ($1.64 per US gallon) we came home so that Paloma could pump before heading for the NICU.
• A new Linda was looking after Lyle today. He's doing wonderfully well. He hasn't de-saturated at all since being extubated. His breast milk intake has been increased yet again and he's not showing any signs of distress. After so many weeks of feeling that his life was a tenuous thing, dangling from a thread as it were, it is very comforting to hear so much good news. We arrived just before the shift change and really only had time to say hello before we were kicked out.
• Linda informed us, almost gleefully, that we'd just missed an episode of projectile poop. She was changing his diaper and she lifted up his legs to slide in the clean diaper when he let loose. It fired across his bed and hit the counter across the way, splattering his new quilt on the way. I was just as glad to have missed that particular mess.
• After the shift change we returned to find Carol in charge of Lyle. She is a primary care nurse for the twins across the aisle and today Lyle is paired with one of them. I asked her if Paloma could try recreational breastfeeding. This is something done with preemies to see if they can get the idea. The mom empties her breasts by pumping and then gives the baby a nipple to see if he will suck at it. Since mom is dry and the baby is getting his nutrition elsewhere it doesn't matter if it takes a while for him to catch on and it's fun for all parties. Carol wasn't sure if it was appropriate to try that just yet but she said she'd ask one of the doctors. Christina Anderson said that they weren't quite ready for Paloma and Lyle to try this yet. Paloma has a very good milk supply and Lyle has a very strong suck and so they were worried that he would start sucking and get a lot of milk. More than they really wanted to challenge his stomach with just yet. So, the plan is to get Lyle up to full feeds (perhaps 19 or 20 cc's per hour) and then start him on bolus feeding. This means that instead of continuously dribbling small amounts of milk into his stomach over an hour they would give him two hours worth all at once and let him work on that for a while. This mimics the more natural way of feeding. Once he's handling that well then we can see if he will take to the breast. Some preemies never do. After being intubated for long periods they don't want to have anything else in their mouths, not even their mother's nipple. However, Lyle gives every indication of being ready to breast feed. He loves having a pacifier in his mouth and will happily suck on it for hours at a time. He has a translucent pacifier which provides you with a little window on his sucking activity. Through it you can see his jaw working. I think he will do just fine.
• So, at least there is a plan. He should be on full feeds by the time we arrive Monday evening and then maybe Paloma can put him to breast. It's really exciting to see all the changes in the last week. He seems to be getting closer to release every day. All his antibiotics were discontinued today and so the only medication left is the Amphotericin. He should be done with that by this coming Friday. My guess right now is that we'll have him home in the first or second week of December.
• Paloma held Lyle and this time we didn't have to have a nurse help us at all. I arranged all his tubes and wires, picked him out of his bed and placed him in Paloma's arms. We had one tense moment when his head titled too far forward and he couldn't breathe properly but Carol got that sorted out in no time. Then I started reading The Subtle Knife (by Philip Pullman, the sequel to The Golden Compass) to them.
• After a brief visit we put Lyle back to bed and then dashed home to have dinner at Zoccoli's Pasta House with Steve and Lori and Robert before going to the second concert of the Santa Cruz Chamber Player's winter season.

• Little Lyle seems much like any other baby now. Well... if that baby had a nasal cannula and a broviac catheter and lots of electrodes sticking to him and a nurse looking after him 24 hours a day. But other than all that he's just a baby. He gets fussy when his diaper is dirty. He calms down again when it's clean. It's really nice to see him behaving so normally.
• The numbers keep changing as his weight changes but I think the plan is now to get him to 20 cc of breast milk per hour and then start him on bolus feeds. That should happen by Monday evening.
• We're now starting to get a lot of nurses say things like, "he's looking so good, he could be released soon." based on that we hope to arrange a conference with Dr Halamek, the pediatrician currently in charge of the NICU sometime this week to get some idea of how the next few weeks will play out. We know that Lyle has to finish the antifungal medication before they will consider moving him to Dominican (or, even, sending him home). And once he is through with that they can remove the broviac. But what else needs to happen is less clear. This is so exciting! The starting line is in sight.
• Karen, his nurse this evening, bought him the cutest little outfit. He was wearing it when we arrived. It's a little button front jacket-like thingy which is enormous on him. She had the sleeves rolled up so that we could see his hands. You can see it in the photo called "The mommy holds the baby" in the album Lyle Bartley Vachon, part 12. Karen says that we can now bring outfits for Lyle and dress him up whenever we want to. See, I told you he was just like a real baby now.
• Sunday was otherwise uneventful. We left around 7:00. Went home and watched last week's Buffy the Vampire Slayer and Angel crossover event courtesy of Denise and Robert. Thanks guys. It was good fun and explained a bunch of loose ends that had been nagging at me.

• Another couple of firsts for Lyle today.
• He got his first bottle. Fed to him by his father. Okay, so it wasn't entirely successful. Still, it was fun for me. Lynda had me prop him up a little and then she handed me the bottle. All warm and ready to go. I tilted it down to put it in his mouth and warm milk sprayed all over his face./ I hadn't realised the milk would come out that easily. I thought he'd have to suck on it for anything to happen. When I did get the nipple in his mouth he started working it even though he was mostly asleep at the time. I could see milk in his mouth and little bubbles of air appeared in the bottle. When he'd taken about 5 cc's Lynda had me burp him. Diaper over the shoulder. Little body over the diaper I carefully patted his back. Was that a burp. I stuck my ear close to his mouth but I couldn't tell if he'd burped or just made a protesting noise, "why are you hitting my back, Daddy?" Uh... sorry son. I tried him on the bottle again but he didn't seem to be too interested. We reverted to bolus feeding. Lynda put the rest of the milk into a syringe and then taped it to my shoulder (heh, I finally get to be a piece of medical equipment...). She started the flow with a little pressure from the plunger and then let gravity do the rest. I feel confident that he will get the hang of it eventually. The doctors want to get him started with the bottle before moving him to the breast. I suspect that it's because they have an obsession with numbers. They want to know exactly how much he's eaten (so they can be sure that he's getting enough calories to grow big and strong). I'm often amused by the way they attempt to quantify perfectly natural, and inherently unquantifiable actions.
• Then, while gravity was feeding my son, Lynda rolled out Lyle's hot bed and replaced it with a crib. A big, polished chrome crib which looks more like prison equipment than a place of warmth and comfort but a crib nonetheless. Our little boy is growing up. He doesn't need the hot bed to help him maintain his temperature any more. Progress is being made.
• After dinner (leftovers on the roof, it was a bit cold but still quiet and private which is very important to us) we returned to Lyle's side. We had asked Lynda if we could talk to one of Lyle's doctors to find out what the plans were for him leading up to his release. Dr Lowthert, one of the residents following Lyle, came by to speak with us. She said that there were three things required before Lyle could go home with us: he has to be able to maintain his own body temperature, he has to be eating on his own (either from bottle or breast) and he has to be off the oxygen. But, she said, they were flexible on all those requirements. Babies who have had cardiac surgery, for example, are allowed home while they are still being tube fed. This is because sucking a bottle uses up precious calories which those babies need to grow stronger. Also, babies can be sent home on the nasal cannula if they need a little oxygen boost. Apparently, Lyle is only on the oxygen right now because of his eyes. The extra oxygen maintains his saturation in a place where his eyes can grow and heal at their best. Also, Lyle has been keeping himself warm for over a week now so that's not an issue. We will have to learn Infant CPR before Lyle can be released to us but the nurses will teach us as we get closer to that time. She also said that they would love to send Lyle to Dominican if he needed a week or so of growing before coming home. Having him closer to us is high on their list of priorities. All in all, very encouraging.

• Two Vickies. One right after the other. As Lyle's nurse that is. Only, the first one spells it Vickie and the second Vicky. Still, I think this is another first for Lyle.
• Vickie had taken her other baby for an MRI when we arrived. After looking at our baby for a little we decide to hold him. Pett asked if we needed any help. No thanks, we'll manage. So we arrange all his wires and tubes and then Paloma picked him up out of bed and put him on my lap. Too cool. He's portable. We're self-sufficient.
• Okay, I have to go back in time a bit and fill in some details that I skipped over. We met Dr Halamek as we were entering the NICU. He was on his way back to his office but he stopped to talk with us a bit before hurrying away. He told us that the Dr Gaynon was the gatekeeper on the path to the next stage of Lyle's life. If Lyle's eye exam (tentatively scheduled for this coming Friday - Lyle's due date) goes well then he can move on, either to the intermediate nursery or to the nursery at Dominican. We talked a bit more about the ramifications of Lyle's brain bleed. Dr Halamek said that at this point we were like any other parents taking a new baby home. Would he hit the appropriate milestones at the appropriate times? LPCH will follow up with Lyle at regular intervals over the next couple years. If Lyle is having problems at any stage then they will have the resources to help him maximise his potential. Dr Halamek did say that they can't promise Lyle will do well but that he is not hydrocephalic at this point is a good sign.
• Our friend Lori stopped by to visit Lyle. She even jumped in a changed one of his wet diapers. What a trooper! Right as Lori arrived, Dr Anderson came to talk with us about breastfeeding Lyle. She has written the order that he can be breastfed once per shift. The actions of coordinating sucking and swallowing with breathing is difficult for newborn babies to learn. Dr Anderson doesn't want Lyle to struggle too much. It would not be a good thing for his eyes to have wild swings in his oxygen saturation. The first time he gets the breast they will suck out the contents of his stomach afterward to see how much he's getting (yet another attempt to assert control over a natural, uncontrollable event).
• We went with Lori to The Long Life Noodle Company and Jook Joint for dinner. It was fun to chitchat and get caught up on all the gossip (don't worry, Steve, we didn't talk about you too much).
• Paloma had wanted to try breastfeeding Lyle after we got back from dinner but we didn't convey this intent adequately to his nurse. On returning to the NICU we found Lyle being gavage fed (through his nasal-gastric tube). Oh well, we can try again tomorrow. He was being quite fussy. His diaper was a slightly wet but changing that didn't seem to help too much so the next Vicky helped us remove Lyle from his crib and deposit him in my arms. He liked it and went to sleep pretty quickly. Paloma read us some more of Where the Red Fern Grows. Carol, his nurse from last weekend, told us that she'd never read this book. She thought she should stand by us whenever Paloma was reading so she could hear it too.

• The latest news from Gayle is that if Lyle's eye exam goes well then there is really no reason to move him to Dominican. He could be released directly into our care! Perhaps as early as next week. The prospect is exhilarating and frightening. We've been waiting so long for this time. The thing of it is though, we have evolved a very comfortable schedule. We know and trust his nurses and so have been visiting him whenever we wanted to. We changed his diapers when we wanted to. We held him when we wanted to. When he is home he will be the one driving (in a metaphorical sense of course, I'm not letting him behind the wheel of a real car until he's way older than three months, try 198 months and even then he's not getting my car on Saturday night... his mother's maybe). Gayle said that they will try to get him feeding every three hours instead of every two hours so as to make the night time a little easier on us. Anyhow, our excitement is palpable.
• When I talked to Gayle in the morning I told her that Paloma would like to try breastfeeding Lyle today and that we'd be there around 4:00, just in time for one of his regularly scheduled feedings. I said that if we were a bit late to just hold off the gavage feeding until we arrived. She promised to pass the word on to the next nurse.
• To our dismay we saw a syringe attached to Lyle's NG tube when we arrived about ten minutes late. We were worried that Gayle had forgotten to tell his next nurse that we were coming. Carol quickly reassured us that the syringe was left over from his 2:00 feeding and that she was waiting for Paloma to provide him with the fresh stuff. Whew. You can a (discreet) photo of Paloma nursing Lyle in the album named Lyle Bartley Vachon, part 12. It was marginally successful. Lyle probably swallowed a mouthful of milk over the space of half an hour. He just didn't seem to want to suck. He would make a half-hearted attempt every minute or two and then drift back to sleep. After 45 minutes or so Carol sucked out the contents of his stomach make sure that something had gone in and then fed him the rest of his allotment through his NG tube. Paloma then moved Lyle to my lap and went to pump. I put a pacifier in his mouth and he sucked like crazy. Carol thought it was just what he was used to and that he'd get the hang of the breast soon enough.
• Carol told us that Lyle had a chest x-ray earlier today and that his lungs are still a bit moist so the doctors have added another diuretic to his regime. This one is taken orally. She felt that he could be released into our care despite this drug. That we would have to feed it to him with his dinner. We talked a lot about what it would mean to take Lyle home. She said that he would likely come home with an oxygen requirement. They would give us one of the big green metal bottles of oxygen plus a smaller backpack-like supply which we could use when taking him for walks on the beach. If he still needed gavage feeding they would give us a supply of feeding tubes which we would have to learn how to insert. They need to be changed once a week or so. None of this sounds too difficult. It would be nice, of course, if we could just have a "normal" baby to deal with but if he has extra needs, so what? We'd rather have him home on oxygen than not home.
• The other good news is that his Amphotericin has been discontinued after tomorrow and since that's the only thing they're currently using his broviac catheter for then that can be removed too. Tomorrow being a holiday (Thanksgiving for our non-US resident readers) the broviac probably won't be pulled until Friday at the earliest. How exciting, though. The less attachments, the better.
• The only slightly ominous note was when one of the nurse practitioners came by to tell us that there was some evidence that Lyle wasn't digesting all his breast milk and so they were go reduce his feeds from 41 cc every two hours to 35 cc every two hours. I asked Carol if we should be worried about this and she thought not. She felt that it just meant that he'd been given too much too soon.
• Other than that, Paloma and I took turns holding Lyle and reading to each other. It was a good evening made better by the hope that we could be bringing our little boy home soon. Still, as we were driving home we agreed that it was hard to relax completely and enjoy all the good news. Too often in the past we have had lots of good news only to be sucker punched when something bad happens.

• Did I lay it on a bit too thick with the foreshadowing yesterday? Paloma called the NICU this morning and talked with Irina. The surgeons are concerned about the presence of fat in Lyle's stool since this is a sign that his intestine is not working properly to absorb all the nutrients being passed through it. Also, his weight gain has not been good. Their feeling is that his stomach is not ready yet for full feeds and so they are going to reduce the amount of breast milk he's getting and re-start him on TPN and lipids. No-one wants to make any guesses as to how long it will take for his stomach to be ready for full feeds. This means that he probably won't be coming home any time soon. This also means that he can't even be transferred to Dominican since they don't have the facilities to produce TPN. They might, however, transfer him to the Intermediate Care Nursery. I have very mixed feelings about this. We know and trust all the nurses in the NICU and we know the schedule and just feel comfortable there (or about as comfortable as it is possible to feel in such a strange and unnatural environment). Moving to ICN would mean a whole new set of nurses to break in. I'm not sure I have the strength to train more of them…
• Speaking of training nurses, we first met Irina shortly after Lyle was admitted to the NICU. At that time she was a trainee. She was shadowing Ingrid for six or seven weeks being exposed to the full range of infants that need intensive care. Today she has Lyle all by herself. She's fully trained now. I'll spare you the obvious thoughts about time and its rapid passage.
• Thanksgiving dinner was provided by Dave and Greg. It was a fine vegetarian affair. We chatted about failing dot-coms and nipple confusion, ate far too much and then took a brisk-ish walk through their neighbourhood in Scotts Valley before heading off to see Lyle. It was a nice way to celebrate whatever it is Thanksgiving is supposed to celebrate. Pilgrims and Indians I guess.
• Paloma told Irina this morning that she wanted to try breastfeeding Lyle again today and that we would be there in time for his six o'clock feeding. She was all prepared for us when we got there around 5:00. We changed his diaper and chitchatted with some of the nurses (congratulations, by the way, to Ingrid, who is now engaged and will likely be married some time next year).
• Then Paloma put Lyle to breast. Now, one of the problems that babies like Lyle can have is really, truly called "nipple confusion". The various objects that he's had to suck on all behave differently than a breast does. He has quite happily sucked on his ET tube, on pacifiers and even on my finger but nothing has really prepared for getting milk from a breast. I think I said earlier, there is even a good chance that he might never get it. That certainly seemed to be the case. Whenever Paloma put her nipple in his mouth he cried violently and used his tongue to thrust it out. Paloma tried valiantly for three quarters of an hour and he just got more and more pissed off. Finally we fed him his allotment of milk (20 cc's for two hours) through his NG tube. Then we checked his diaper. It was full. Both ends had fired off. I changed it and he almost miraculously calmed down. Oops. Maybe he wasn't mad about the breastfeeding. Maybe he had been unable to concentrate on it because he had a poopy diaper. Duh. He was telling us as clearly as he could what the problem was and we made the plausible but incorrect assumption that we understood him. Okay, better luck next time. Irina said that Paloma could try again at Lyle's eight o'clock feeding since this attempt could hardly be counted.
• Shirley was Lyle's nurse after the shift change. One of the first things she asked us was, "when is your harpist friend coming back?" She was disappointed to hear that Jennifer is probably going to be here on Friday evening since she is off on Friday.
• Shirley got Paloma a privacy screen so she could try nursing Lyle again. This time we changed his diaper first. And he liked it. He took in Paloma's nipple and really worked on it. I could see his jaw moving as he sucked. He would often stop and seem to fall asleep but wiggling her nipple in his mouth always made him start up again. I don't know how much milk he actually got. Shirley sucked it out of his stomach and there didn't seem to be too much there but that's okay. He's getting the right idea. As I said to Paloma, she's fortunate in that she has a good milk supply. Pity the poor mother whose milk hasn't come in and who is trying to nurse a hungry full term baby. There's a recipe for frustration.
• We were quite concerned to learn that Lyle's Amphotericin might be continued even longer (particularly since the doctor from the Infectious Diseases seemed happy to D/C it last week) and we were happy to have a chance to discuss it with one of the residents. She said that since his infection had been so extreme (fungal balls in his kidneys) that they thought he might need a longer course to completely clear it from his system. I told her about the comments of the doctor from ID who said that the first ultrasound image had probably been wrong since the second image showed no signs of fungal balls and they just can't disappear in two days. She looked through Lyle's medical chart and found the order to D/C the Amphotericin from last week and said that it was very clear. She promised to mention it to the chief pediatrician at rounds tomorrow morning. So, maybe we saved him from even more of that horrible (life-saving) drug.
• Shirley reassured us about the transition to the Intermediate Care Nursery. She said that it is much quieter and calmer there and that the nurses are much more laid-back than the NICU nurses. It would be a good step for Lyle (if it happened). Intellectually I believe that, emotionally the change is disturbing. We'll see what happens tomorrow.
• Lyle is thirteen weeks old today.

Morning…

• I just got off the phone with Gayle, who is Lyle's nurse again today. The news is pretty positive. The surgeons are not overly concerned about the fat in Lyle's stool or the slow weight gain. They feel it is just a matter of time before he will be able to take full feeds and they will try him again early next week. That he did not drop much weight and is not suffering from extreme diarrhea is a sign that he just needs to grow a bit before they try him again. One of the doctors even wanted to increase his breast milk again today but he was overruled by the others who said that Lyle hadn't had enough time to grow yet.
• But, the really good news is that Lyle had another eye examination this morning and has shown improvement in both eyes. His Stage 2 eye has been downgraded to Stage 1 and his Stage 3 eye has gone down to Stage 2. This is an enormous relief. The oxygen and light regimen seems to be working.
• Gayle also said that Lyle would not be the first candidate among the babies in the NICU for transfer to ICN. He still has enough issues that other, healthier babies would be moved first. So maybe we won't have to deal with that particular change just yet.
• We are planning on doing a bit of Christmas shopping this morning before heading up to the NICU. Hopefully we will get there in time for his two o'clock feeding.
• Lyle is three months old today.

Evening…

• On thinking about it we decided not to go out Christmas shopping this morning after all. The thing is that our days are so full already what with work and visiting Lyle that we felt it would be nice to have some unstructured time at home. So we hung out at home. I tuned my cello. It was the first time I'd touched it since before Lyle was born. I was chagrined to see rosin on the strings left there from the last time I played. I messed with the tuning a bit before deciding that it actually sounded pretty good the way it was. I played some scales and some exercises from Feuillard's Exercises Journaliers. I am totally out of playing shape. My arms were aching after fifteen minutes. But my fingers still remember where to go. Of course I'll have lots of time to play when Lyle gets home…
• After re-reading yesterday's entry I decided I should have another try at explaining "nipple confusion". This is a (somewhat controversial) condition which supposedly arises when a baby is both breast fed and bottle fed. Breasts and bottles behave differently. When eating from a bottle the baby has to use his tongue to regulate the flow of milk into his mouth by pressing the nipple up onto the roof of the mouth. Eating from the breast requires a more of a massaging motion. If both methods are used the poor little baby can get confused as to which technique he should be using. To avoid this the nurses and lactation consultants generally prefer you to stick with one method or the other. In Lyle's case he's had so many negative oral stimuli that he seems a little gun shy when presented with the breast. He does suck on pacifiers and fingers so he should figure out how to nurse eventually.
• There was an audible murmur of excitement from the nurses in the NICU when Jennifer arrived (around five o'clock) with her harp in tow. The nurses are a wonderful audience. They were quite happy to listen to her tuning up. One nurse opened up the doors between Room 1 (Lyle's room) and Room 2. Of course there will be much wailing and gnashing of teeth when the off-duty nurses learn that they missed her once again. We can't thank her enough for her generosity in playing for Lyle and his caregivers. After she'd left Karen said that she was a friend to treasure since she had seen Lyle through all his stages from quite sick to quite well. We agreed.

• We finally did manage some Christmas shopping this morning. It was a beautiful day. Warm and sunny. So we walked downtown and had breakfast (at Kelly's French Bakery, in case you were wondering) before cruising the shops. Good progress was made. Now we just have to wrap stuff and get it in the mail before the Postal Service deadlines arrive.
• Paloma's adventures in nursing continued when we arrived at the NICU today. We got there around a quarter past two. Gayle had held his two o'clock feeding so that Paloma could try yet again. It was only marginally successful. Lyle seems to distrust the breast. Gayle promised to have Fritzi, the lactation consultant, stop by later this afternoon to help Paloma.
• During the shift change at 3:00 we went up on the roof and sat in the sun and ate some snacks bought at the bakery this morning. It was quite lovely and peaceful. We hardly wanted to head back for the hurly-burly of the NICU.
• Paloma and I headed off to one of the parent rooms so she could pump at 4:00 when Karen came hurrying after us. Fritzi had arrived. Did Paloma want to try nursing again? But of course she did!! It turned out that we had met Fritzi once before. Way back when we first started coming to the NICU she had helped Paloma ensure that she was using the breast pump correctly. Her approach was very calming. She changed the way Paloma was holding Lyle to make it more comfortable. She advocated a very calm and patient approach. Her theory is that Lyle knows that Paloma produces a lot of milk and he's afraid of getting drowned. Therefore his sucking is very tentative. (Okay, so, the part of this theory that I'm not so sure of is how he could possibly know that Paloma has a good milk supply but we'll go with it for now.) She told us how to interpret Lyle's behaviours so that we could tell when he was rooting and when he was actually ready to latch on. I was very impressed, she was teaching us patience. She definitely wanted the feeding to proceed at Lyle's pace. She had Paloma rub her nipple against his lower lip and let him smell and taste the milk. Once he has the smell in his nose he gradually starts to display his interest by making little grunting noises and opening his mouth. When it's open enough then Paloma puts her nipple in. He is still very tentative about sucking. When he got anxious and fussy Fritzi had Paloma move him away from her breast and offer him a finger instead. The little beast sucked on the finger like crazy. He probably is a bit gun-shy.
• I can only imagine how Paloma feels about this but at one point Fritzi helped her out by placing a hand on her (Paloma's) breast to get it in the right shape and then putting it in Lyle's mouth. Paloma says that she is no longer self-conscious. Not since giving birth with a dozen or so people in the room watching her every contraction. But even still, it is a bit of an invasion to have some stranger watching and helping her breast feed.
• We asked Karen if there was anything fun we could do today with Lyle. Something out of the ordinary. She suggested taking Lyle for a walk. While Paloma was talking to Fritzi, Karen was marshalling her forces: a stroller, an oxygen bottle and an auto-syringe (for his TPN). After Paloma had abandoned this attempt at nursing we went off to one of the parent rooms so she could pump. When she had accumulated 20 cc's I was sent back to Lyle's room, warm bottle in hand, with strict orders from Paloma to return and continue reading to her after I'd completed my delivery. Karen had other ideas. She quickly got Lyle out of his crib and into the stroller, hooked him up to the auto-syringe and oxygen. Then we went back to the room where Paloma was awaiting my imminent return. She was surprised and pleased. She said that she had been planning on reaming me out for not returning to her after making a solemn promise to do so. Whew! Dodged a bullet there.
• Karen said she'd feel more comfortable if we stuck to the second floor of the Children's Hospital. The hospital is built around a central garden on the first floor which opens out to the sky. A corridor runs all the way around it with huge windows showing off the greenery. We walked the corridor deasil until bored and then widdershins. I can't tell you how nice it was to be at the hospital with our son but not stuck in his stuffy room. Tomorrow, if it's sunny when we arrive, Karen says we can take him up on the roof and expose him to some sunshine. At one point Paloma said that she felt like a make-believe parent. We can push the baby around in his stroller but only as far as his real mom (or, in this case, his nurse) says. After making a few too many circuits of the halls we were sorely tempted to make a break for the elevators.
• When we brought Lyle back to his room one of the receptionists told us that we looked really happy.
• I found the whole experience of walking around the hospital with Lyle on his life support equipment to be very enlightening. I have often seen patients there strolling about with medication pumps and surgical masks, attached to all manner of equipment. My reaction has often been one of pity for these poor beleaguered souls. Walking with my son my feeling was one of pride. He is such a beautiful baby and he has survived so many hardships. I wanted everyone to congratulate him. To admire him. I didn't want their pity. I will think of that the next time I see one of Lyle's fellow patients in the hospital halls.
• Pictures of the Great Escape can be seen in the album named Lyle Bartley Vachon, Part 13.

• Today was more or less a repeat of yesterday, including another attack of Christmas shopping. Now to get it all wrapped and in the mail before the end of the year.
• We arrived too late for Paloma to try nursing Lyle during his 2:00 feeding but she was there and ready at 4:00. Lyle proved uninterested despite having a clean, dry diaper. In an particularly infuriating display of independence, when we finally gavage fed him after half an hour of attempted nursing he was more than happy to lie on his back and suck away at the pacifier while milk was being piped directly into his belly. Sheesh. Has this kid got a mind of his own or what?
• After the feeding we sprang him from his crib and took him for another stroll around the hospital. This time we had permission to visit the third floor. This was a nice change of scenery. The halls of LPCH are covered with art and we really enjoyed having something different to look at. Although we didn't have explicit permission to do so we took Lyle onto the roof and walked him around for a bit. It was after dark and so a bit chilly but Lyle had lots of blankets tucked in around him. Unfortunately, Paloma and I were unprepared having left our coats in the NICU. We made one circuit and then quickly retreated to the warmth of the third floor.
• It's very interesting having Lyle unhooked from all his monitors. Questions about his breathing and oxygen saturation have to be answered the old-fashioned way: is his skin a healthy orange colour? are his lips turning green? does his little chest move up and down with every breath? I think this is good practice for us. For when we get him home and he is finally monitor free. In the event, he slept the whole time he was in the stroller.
• The six o'clock nursing went a bit better. Lyle actually latched on to Paloma's breast and started sucking (or, at least, his jaw moved as though he was sucking). Linda then aspirated the contents of his stomach and found nothing much of anything there. He was just messing with our minds. He wasn't sucking at all. As soon as the milk started flowing down his NG tube and his mother stopped annoying him with her breast he went right back to sleep. We keep telling him that unless he develops this particular skill they will keep him in the NICU. Even the babies in the Well Baby Nursery have to learn how to feed before they are released to home. He continues to ignore our sage advice.
• The surgeons are talking about increasing the amount of breast milk he gets tomorrow. From 20 cc's to 25. Diana, one of the NICU nurses who checks in on Lyle every so often (although to the best of my knowledge she has never cared for him) said that Lyle's course is typical for babies with his history. Increase his feeds until he can't take it any more. Back off for a while. Increase his feeds again. Back off again when he has difficulty. Eventually, after enough cycles like this his stomach matures enough to where it can handle full feeds. The sooner the better from our point of view but there's no point in pushing Lyle.
• In case you are interested, one of the signs last week that he was not ready for full feeds is that he was having very fluid diarrhea. His stool now has much better form. Kind of seedy. If you've ever seen breast milk poop you'll know exactly what I mean. And no, I will not post any pictures of it. You're welcome.

• I have to keep reminding myself that it's not a race. Lyle will come home when he's ready. The progress made by other babies is irrelevant. Still, sometimes it's hard to see babies come and go while Lyle remains in the spot he's occupied since birth. Last week there was a sick baby in the spot next to Lyle's. We watched his parents with compassion. They were just embarking on their NICU experience. Their baby was on the oscillator. His red-eyed mother visited him frequently. A couple days later he was completely off the ventilator, on a nasal cannula, just like Lyle. A couple of days after that he was transferred to the Intermediate Care Nursery. It almost felt that we wasted our compassion on them since we are still stuck in the NICU. We know that Lyle is doing better every day. It's really not fair to him to compare his progress with that of the other NICU residents.
• Paloma had two opportunities to nurse Lyle tonight. Caroline, his nurse for the evening, called Fritzi who came by to help out again. Lyle was much more awake for this attempt than yesterday's and he seemed to get it. I even got to do something. I held Lyle's head and, when his mouth was open, pushed it onto Paloma's breast. He fussed a bit but was generally quite willing to suck and swallow.
• Lyle was awake most of the evening. Unusual for him, he often seems to nod off right when we get there. We spent most of our time there with Paloma nursing or me holding him while she pumped.
• Part of the surgical team stopped by to check up on Lyle. They seem pleased with his progress and will have his milk allotment raised tomorrow from 25 cc's to 30 cc's every two hours. Caroline told me that they look at the number of his bowel movements and the consistency of his stool when making the decision to change his feeding. They want him to have no more than three or four bowel movements each day. More than that and he's probably dumping undigested milk (a bad thing)
• Chase has reappeared. He is back from Birmingham, Alabama for a two week stint in the LPCH NICU. In one sense it was nice to see him again. In another it was real drag to think that we had been there long enough for him to have been gone for over a month.
• Also, I don't think I ever mentioned Gayle's comments on ROP from last Friday. She said that, in her experience, once the degree of ROP has been downgraded it never gets worse. Of course, Dr Gaynon would be the one to make the final pronouncement on this subject but we are cautiously optimistic.

• Lyle did well nursing again today. We think he's just a bit too used to getting his nutrition without any effort. He will eat for a few minutes and then just gets cranky when asked to do more. When we talked to Gayle this morning she said that he was able to take about 15 cc's (half his feeding) from a bottle. He did, however, get a lot of air with that. She had to aspirate it from his stomach before gavage feeding him.
• There seem to be two schools of thought as far as feeding is concerned. One school says that the surgeons will be much more comfortable graduating Lyle if he can eat from a bottle. Then they can see that he's taking all the milk they give him. The other school says that breast feeding is the best and so why confuse the poor boy by giving him a bottle. I always thought Gayle was of the latter school and so was surprised that she had given Lyle a bottle. Since Paloma and I are usually only at the NICU for two or at most three of Lyle's feedings it kind of makes sense to me to have him used to both forms of feeding. If we insist on him only being breast fed then he would have to gavaged for all the rest of his feedings. I don't know about him but I would feel a lot better if he didn't have to have that tube down his nose. You can tell he doesn't like it either. He worries at it all the time. Even the industrial strength nursing tape can't hold the tube in place for more than an hour or two.
• As we were entering the NICU after dinner we had a chance to talk with Dr Lori Lowthert about Lyle's progress. She said that Dr Gaynon had okayed a transfer to Dominican and that they were just waiting on the surgeons to agree to the move. For that to happen Lyle has to get up to full feeds and be shown to be gaining weight. One of the surgeons later told us that full feeds for him would be 40 cc's of milk every two hours. That could happen by Friday. Dr Lowthert said that the surgeons were in charge of this phase of Lyle's recovery. She said it was their repair and so they were driving.
• When we got to his bedside we saw that Lyle's eyes were dilated and the eye exam equipment was out and ready. Dr Gaynon had called to say that he would be there soon so get Lyle ready. We were quite excited. This would be our chance to meet him. We sat and held Lyle while waiting. Paloma has started reading Little Men (by Louisa May Alcott) to me. It was a gift to us from Karen, one of Lyle's primary care nurses. She said that Paloma and I reminded her of Dr and Mrs Bhaer. Paloma has read me a couple chapters already and I'm quite enjoying it. The love the Bhaers have for children is quite appealing.
• Dr Gaynon showed up around 8:30 to examine Lyle's eyes. Lynda said that she thought it would be better if we weren't there for the examination. She said that it was hard to watch and that she didn't even want to be there for it. We went for a quick walk while he was doing his thing. When he was done we had a quick chat with him about the state of Lyle's eyes. The news is all good. The ROP has been downgraded to Stage 1 in both eyes. Dr Gaynon said that keeping Lyle's oxygenation in the right range is working. It will be a long slow process for Lyle's eyes to fully mature. Perhaps another two or three months with an eye exam required every week. Dr Gaynon said that Lyle will be at risk for myopia as a result of the ROP but that would've been the case anyhow since I am nearsighted. It might just show up a bit earlier in him than it did in me (I think I got my first pair of glasses when I was twelve years old, thirty years ago in case you're keeping track). I asked Dr Gaynon if Lyle's eyes could get worse now that they were seen to be getting better. I think he dodged the question. He did say that when ROP gets worse the downhill slide comes very quickly.
• A transfer to Dominican would be nice of course but our ideal would be release to home. It doesn't seem like there would be any point in sending Lyle to Dominican if he would spend less than a week there. So, if they send him there it would probably be for a couple weeks. If they transfer him at the end of next week (I'm hypothesizing here, trying to second guess the doctors) that would give the surgeons enough time to verify that he's doing well on feeds. Then another couple weeks at Dominican for him to get fat. That makes release before Christmas look a bit iffy. I know these numbers are pure speculation but they are disheartening nonetheless.
• We have resolved not to talk about potential release in front of Lyle. Whenever he knows that we're getting our hopes up he does something to increase his time in hospital. He knows what we're talking about. The official story, the one that we tell him, is that he will be in the LPCH NICU until he's eighteen. That would make our life so much easier. Guaranteed twenty-four hour babysitting, seven days a week. We could take off on holiday whenever we wanted to. Maybe if he thinks that his coming home would be a bad thing he'll shape up and come home sooner. Reverse psychology. Can't you just tell that we're going to be wonderful parents?
• Paloma and I are both feeling burnt out. We're going to take tomorrow off. Have dinner out. Maybe see a movie. Maybe just do nothing.

• Lyle is getting 35 cc's of breast milk every two hours and, so far at least, is handling it well. Keep your fingers crossed. Oh and he's now over 7 lb. Other than that nothing much is happening with him. Lynda gave him a bath. I wish we'd been there for that. She said he can have another one in a day or so. Maybe Friday evening. She said that she held him for an hour so that he got some human interaction. Actually, hearing that made me feel very guilty about not making the drive up there this evening. He needs us. How can we deny him? Being a parent is so hard.
• We did stay in Santa Cruz today. I had a hankering for a hamburger and fries so after work we met at Jack's Hamburgers (as far as I can tell they don't have a web site but their hamburgers are really good - 202 Lincoln Street). They closed at 4:00. Plan B, quickly arrived at was to head over to Foster's Freeze. The burger was quite satisfactory and then, for dessert, we had chocolate dipped soft ice cream cones.
• We stopped in at Atlantis Fantasy World to pick up some comics before heading home. Yes, in case you didn't know, we are comic book junkies. We have an account at Atlantis with a vast number of subscriptions in it. Every week they set aside for us the new comic books which we have said that we want. What, you may be wondering do we read? Well, Paloma really likes anime (Japanese comics) so we get Blade of the Immortal and Gunsmith Cats and whatever else strikes her fancy. I like dark and brooding commentaries on the absurdity of our urban existence so I get Herobear and the Kid and Castle Waiting and Bone. And a whole lot more. I like looking at the pictures and can no longer seem to find the time to just sit down and read a novel. Comic books require a lot smaller time investment and so fill my need for written words quite nicely.

• Terri, the traveller from Denver, was able to feed Lyle almost 35 cc's of milk by bottle this morning. It took him ten or fifteen minutes and then he threw up. Oops. She thinks that he probably had an air bubble in his gut that she was unable to move when she burped him. He managed to get vomit all over both Terri and himself. She gave him a bath and he went back to sleep, happy and worn out. He showed her a thing or two.
• I asked Terri is she'd get one of Lyle's doctors to talk with us. Fortunately, Lori Lowthert, MD, was there and she was more than willing to answer any questions we might have. The big question was Lyle's release. What, I asked, would incline them to move Lyle to ICN versus Dominican? What would convince them to send him home with us? She said that they probably wouldn't send him to ICN simply because that doesn't help us the parents. Stanford is still a 55 minute drive from home. ICN might be a more congenial environment for Lyle but it would be a disruption for his family. Dr Lori said that there were negotiations going on behind the scenes. If, for example, the only reason for keeping Lyle in hospital was so that he could get an eye exam once a week then he might as well be sent home since we would be more than happy to bring him to an eye doctor, either in Santa Cruz or Palo Alto. The NICU doctors have a good opinion of us in that they trust us to learn whatever we need to in order to care for Lyle. If that means dealing with an oxygen tank or inserting a tube down his nose into his stomach then we'll do it. Anyhow, we were elated by this news. To my mind it shows two good things: 1) they are thinking about releasing Lyle and 2) they are thinking about the health and welfare of his entire family.
• Later, while I was holding Lyle, about half a dozen surgeons trooped past his bed. They were pleased to hear that he was tolerating his 40 cc's of milk every two hours. They want to hold him there for a day or two of observation and will then switch him to 60 cc's every three hours. One of the doctors said that they didn't want him on Q3 feedings just yet because of the "osmotic load" on his intestines. Yeah. Right. Whatever you say.
• At six o'clock Fritzi came by to coach Paloma on her breastfeeding again. And, to our delight, Lyle latched on with hardly any need for encouragement at all. He nursed quite solidly for four or five minutes (perhaps longer, I was watching him not the clock). We weighed him before feeding and then again afterward. It appeared that he was able to get 50 cc's of milk in that short time (Paloma's milk supply is really good... Fritzi called it "feeding from the fire hose"). Fritzi advocates a very gentle burping technique. Basically she had Paloma sit Lyle up and then rock him backward and forward a couple times over the space of a minute or two. Any bubbles of gas are supposed to work their way through the twists and turns of his stomach and then up and out his mouth. She didn't really want us thumping on his back.
• We also talked about reading Lyle's body language with Fritzi. We have often noticed him holding his hands up with his fingers outstretched. Sometimes he even tries to move his hands across his face. Fritzi says that this is his way of saying "stop, I'm stressed". He's trying to hide his eyes to remove the excess stimulation.
• Paul was Lyle's nurse after the shift change. He was very discreet about Paloma's breastfeeding at 8:00. He let me do all the work from weighing Lyle before to moving him onto Paloma's lap to weighing him after. This time Lyle wasn't very interested. He was pretty sleepy. It must be hard to be a baby and get woken every two hours to nurse. Still, he managed to get perhaps 30 cc's this time. We dumped another 20 cc's down his nose tube, just to be sure. Once all this was done Lyle was wide awake and very sweet. He's really a delightful baby. He was happy to suck on my finger while being gavaged.
• Lyle is 14 weeks old today.

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