Morning…

• The cell phone rings at the same time as the alarm goes off (9:00 a.m. in case you were wondering). Dwayne was calling from the NICU to let us know what had been going on with Lyle overnight. When we left Karen had been somewhat concerned that the concentration of carbon dioxide in Lyle's blood was too high. She wanted one of the respiratory technicians to service the CO₂ monitor to make sure that it was reading correctly. Apparently it was. His readings were still high so they drew blood for a blood gas check which confirmed the elevated concentration. Lyle was working too hard to breathe on his own. He was taking short, shallow breaths and was not blowing off enough carbon dioxide. This morning around 6:45 they reintubated him and set him up on a ventilator again. With this assist he is doing much better. The machine ensures that he takes deeper breaths and that more CO₂ is removed from his blood. It is a minor setback but not unexpected.
• They also decided to reduce his feeds to two and a half cc's per hour. They still want his stomach working but they don't want it working too hard. His IV nutrition will be increased to make up for the deficit.
• We will be stopping at Dave and Greg's for lunch before heading up to Stanford. They have offered us the chance to swim in their pool. Much needed stress relief. Unfortunately, as I write this it is a grey and overcast day. Greg assured me that the pool is still warm despite this so we may go in anyway.

Afternoon…

• Well, the pool was a bit chilly but we swam nonetheless. Dave and Greg also provided Paloma with a birthday cake and presents putting me to shame since I didn't organise anything like that for her. In my defense, I had already told her what her birthday present would be when I gave her the spinning wheel for our first anniversary: she gets as many lessons in spinning as she wants plus all the raw materials she could ever want. She gave me the digital camera.

Evening…

• I got to hold Lyle today. We had some problems getting him positioned. His body kept slipping down mine which would cause his sensors to misread and his ventilator tube to get tweaked. Other than that, a good time was had by all.
• Dr Benitz came by while I was holding Lyle to explain what had happened. I may get this wrong 'cos I'm not really very well versed in the chemistry of the human body but, as I understand his explanation, the problem was not with Lyle's lungs. Instead it sounded like they had made a mistake in the formulation of his TPN (Total Parenteral Nutrition = the stuff fed to him through his broviac catheter to keep him nourished until he can get all his caloric needs met by breast milk) and not given him enough of various chemicals that his body needs to indicate to his lungs that they need to remove more CO₂ from his blood. I think he said it was a potassium imbalance which led to the problem. Anyhow, the upshot is that Lyle's body chemistry is out of whack but that they should get it back in line over the next couple days and then he will be extubated again. It's a minor setback but not Lyle's fault. I will check with his doctor again tomorrow and make sure that I understand this correctly.
• You know, the nurses and doctors talked to us about TPN for weeks before I really understood what they were saying. I kept hearing "Total Parental Nutrition" which didn't make any sense to me. Wouldn't Total Parental Nutrition be breast milk? But they weren't injecting breast milk into his veins. That would be disastrous! I'd never heard of the word Parenteral before. It means something taken into the body intravenously or intramuscularly as opposed to through the digestive tract.
• We said goodbye to Crystal (Lyle's nurse a week or so ago) this afternoon. Sadly, health problems have forced her to resign her position at the NICU.

• Okay, now it's my turn. I was jolted out of sleep this morning when I rolled over in bed and the muscles in my lower back spasmed. I hobbled around the house until Paloma drove me to work. Before leaving I made an emergency call and left a message for Patti, masseuse extraordinaire, to see if she would take pity on me and fix me up. At the regular Monday morning engineering meeting Barry said that all the staff over 5' 10" had back problems and that from now on they would only hire short people. I'd've laughed if sitting down hadn't hurt so much. Patti was able to see me at noon so Paloma came and picked me up and we drove down to Salinas to her office. Ironically, we had just been there last Saturday for our regular massages. After working me over for an hour I felt somewhat looser although walking still hurt like hell. Paloma drove me home and I collapsed on the bed while she prepared dinner for our trip to the NICU (What? You didn't think I'd skip that, did you?). By the time we were ready to go I was feeling much better (although sitting caused my back muscles to stiffen up again). We arrived late.
• Talk about a rushed visit. Karen, Lyle's nurse once again, was busy with another baby, a new arrival to the NICU so we hardly had a chance to talk to her to find out what was happening with Lyle. We could see, however, that a new catheter had been installed in his right arm. Karen said that his hematocrit, a measure of the red blood cells in his blood, had been a bit low so they'd given him another transfusion. Every time they give him more blood products they also give him more diuretics so that he pees out the extra fluid and just retains the red blood cells.
• We didn't get to hold him. Our plan was to leave just a bit before 8:00 so that we could make it back to Santa Cruz in time for our 9:00 appointment at Well Within, a local spa where you can rent a hot tub by the hour. We had our dinner on the roof and then dashed home.
• On the way back I called Karen to get her to explain once again why Lyle ended up having the excess CO₂ in his blood. The story as I now understand goes like this: for some reason (perhaps due to an electrolyte imbalance caused by the formulation of his IV fluids) Lyle's body started producing an excess of sodium bicarbonate, NaHCO₃. This caused his blood to become excessively alkaline. To compensate and keep his blood's pH in the proper region his body started hanging on to carbon dioxide, which is an acid to balance out the base of the sodium bicarb. So his pH was okay but he then had way too much CO₂ in his blood. They put him back on the ventilator to get his lungs to work a bit harder to blow off more carbon dioxide. They are also giving him a drug called Diamox which works to reduce the amount of sodium bicarbonate in his blood. The theory is that reducing the one will cause the other to go down too.
• Our soak in the hot tub was wonderful.

• I'm pretty much back to normal now although I still get a twinge or two if I sit still for too long.
• Today it was Paloma's turn to hold Lyle. I have caught a few more pictures of the procedure which are in the album called Lyle Bartley Vachon, part 6. In the first photo (00.10.03 - Transferring Lyle 1) Lynda and Gary begin unplugging Lyle from all his monitoring equipment. In the second (00.10.03 - Transferring Lyle 2) Lynda holds Lyle before positioning him on Paloma's chest. In the third photo (00.10.03 - Transferring Lyle 3) Gary positions Lyle's ventilator tube while Lynda starts taping everything into position. In the final picture (00.10.03 - Transferring Lyle 4) more tubes are taped. The whole process takes somewhere between five and ten minutes. As you may imagine, we are very grateful that the nurses and respiratory technicians are willing to do this for us.
• Nurses are amazing. They could build an entire city out of tape and random oddments. In the fourth picture you can see the stand of a bili-light (used to treat jaundiced babies) on Paloma's right. At one point Barbara was walking by and decided that Paloma didn't need that light shining in her face so she taped a cotton blanket to the stand to act as a makeshift shade. Very impressive.
• Lynda transferred Lyle into a clean isolette just before the 7:00 shift change. But before doing so she weighed him. 1442 grams or a whopping 3 lb. 3 oz.! Now that's progress. All the nurses who haven't seen him for a while say he's looking much bigger. Since we see him everyday the change is so gradual that it's hard to believe it has even occurred. However, Paloma finally thinks it's noticeable. Here's hoping the progress continues.

• I forgot to mention that Paloma and I saw her OB, Margaret Moore, yesterday. It was a follow-up exam for Paloma and our time to ask questions. Like, why was Lyle born early? The quick answer, we don't know. Anytime a baby is born early a lot of lab work is done to see if there can be a reason. Paloma's placenta was sent out for examination as were samples of her amniotic fluid and blood. All results were negative. No abnormalities in the placenta. No infections in her amniotic fluid or blood. We would be able to rest a lot easier if there was a reason for this. Unfortunately this means that her next pregnancy will be watched very carefully and Paloma will probably be required to spend the last few months of it on some form of bed rest. As you might imagine, this will be difficult with Lyle as a (hopefully) active toddler and me working. As Paloma said to me the other day, she really wants to experience a "normal" pregnancy. She kind of feels ripped off that she didn't get to do all the Lamaze classes and the nesting phase and all that. Sean, one of my colleagues at work, told me that I should feel fortunate that I missed out on the childbirth classes. He says they tell you everything you need to know in the first hour of the first class and then spend the next four classes repeating the same information in various slightly different ways. He says the hard part is trying not laugh at the women practicing the breathing exercises. Sounds like fun.
• My turn to hold the boy today! The ever efficient Lynda performed the extraction again. It's so cool. We don’t even have to ask her anymore. As soon as we walked in she asked us whose turn it was and then went off to find an RT to help move Lyle into my arms. I always tell her how much we appreciate her going to all that extra effort on our behalf and she always says that it's easy.
• Lyle pretty much slept the whole time he was next to my chest. Even when he got chest hairs in his eye (all the indignities that poor boy has to suffer, I tell you). He just snuggles in. Every so often I would feel his little legs kicking and his hands would grab some hairs and pull them out. It was worth it.
• William Rhine, MD, is the Neonatologist in charge of the NICU for the next three weeks. He stopped by to check-in while I was holding Lyle. He said that Lyle had another brain ultrasound that day and that it looked like he was catching a break. His ventricles have not enlarged at all and it looks like the blood clot is slowly dissolving. The growth of his head is just that, normal growth. Not the swelling you would expect to see if the cerebrospinal fluid was accumulating in his brain.
• However, Lyle's next hurdle is upon us. Sometime toward the end of the week his eyes will be examined for evidence of ROP (Retinopathy of Prematurity). This is a condition seen in a large percentage of premature babies. Abnormal growth of blood vessels in the eye can cause the retina to detach. In the worst case this can lead to blindness. The eye doctor in the NICU is top-notch and has lots of experience with this condition. He will be checking Lyle's eyes on a weekly basis until he is released. If he develops ROP and needs treatment he is definitely in the right place for it.
• Then we headed home for another soak in the hot tub. This is the weather for it. Warm during the day but cool at night. We especially like the outdoor tubs. We lie in the hot water and look up at the night sky. Last year we were in a tub when it was raining. It was a great experience which we hope to repeat this year.

• Lyle got another blood transfusion today. The last blood test showed that his red blood cell count was still quite low. I asked Carol why he was still anemic, if there was something worrisome going on there. She said that it was quite normal for preemies like Lyle. His bone marrow hasn't started producing blood yet. When he gets a bit older his body will detect that he's lacking red blood cells and his marrow will start producing more. Right now he continues to grow but doesn't produce the extra blood. Carol once again assured me that the blood supply is carefully screened and that it is very safe.
• Paloma's turn to hold today. I told Paul, one of Lyle's night nurses who we almost never get to see since his shift generally starts at 11:00, that we share holding duties and he was very impressed. He said that a lot of mothers are totally possessive and won't let their husbands near the baby. Once again I find that I lucked out in my choice of a wife! Lyle seems to be a lot more tolerant of handling these days. He fusses a bit during the transfer but then goes back to sleep. Towards the end he became a bit restless. It turned out that his diaper was very wet. He had a shot of diuretic this afternoon and so eliminates fluid like nobody's business.
• Dave and Krissen took us out for dinner tonight. Dave and I first met when we worked at Borland eight or nine years ago. Somehow we got in the habit of having breakfast together. It's a habit that has stuck and we have kept in touch even though we haven't worked together for four or five years now. It's was really great to see them again. The evening went by too quickly. Non-medical conversation works wonders.
• After dinner we introduced Dave and Krissen to Lyle. He slept blissfully through the whole ordeal! Sorry, sorry. It wasn't really an ordeal.
• Before we left, Lynda told us that she'd just weighed Lyle and he was now 1532 grams. That's 3 lb. 6 oz.! He's put on a whole pound since he was born. No wonder he's looking more like a baby.
• Lyle is six weeks old today.

• The ophthalmologist checked Lyle's eyes this morning. I'm glad we weren't there. His eyes were dilated with drops just like in an adult eye examination and then the retina was thoroughly examined. His eyes were immature. The nurse said that he was exhausted after the exam and was sleeping peacefully.
• It wasn't until we got there this afternoon and talked to Terri, a visiting nurse from Denver who was looking after Lyle, that we learnt that immature was actually a good thing. It means that his eyes are still developing and there are currently no signs of ROP.
• Terri also informed us that a test of Lyle's stool had indicated that he was not absorbing as much fat from his breast milk as they thought he should. This is not necessarily a bad thing. On discovering this, however, the doctors decided to give him formula instead of breast milk and reduce the amount to 4 cc's per hour. Paloma was crushed by this news. Everyone keeps saying that breast milk is the best for babies so why put our baby on formula? I don't want to come off as someone who questions every move the doctors make but in this case I think their decision is a poor one. They're changing too many variables at once. Lyle was clearly tolerating 4 cc's of milk per hour. So why not just throttle him back to that level again? Switching to formula just adds another potentially destabilising change to his regimen. The rationale is that the formula in question, Pregestamil, is even easier to digest than breast milk. Fine except that Lyle has already shown that he will digest breast milk while scorning formula. We asked to talk with one of his doctors to get his perspective on the change (which even his nurse thought didn't really make sense) but I guess our concerns came in low on the list of priorities tonight. Maybe we can corral someone tomorrow and talk some sense into them.
• I got to hold my son again tonight. He does so well when held. Everyone comments on it: his nurses, his respiratory therapists, everyone. Again he got a bit fussy towards the end and again it was because of a wet diaper.
• After dinner we had a visit from Penny. Like Dave, Penny and I worked together for a number of years and while our careers have gone in different directions we have stayed in touch, meeting for breakfast or lunch every once in a while and exchanging email regularly. Penny has been following the saga of Lyle and when she saw that Dave and Krissen were visiting felt that it was a good time for her to come. It meant that Lyle was doing well.

• First of all, a number of people have commented that they were worried earlier this week when it took me a couple days to make an update to Lyle's progress report. I'm sorry, I didn't mean to scare you. Lyle is doing very well just now but we're very tired. Every day we recharge to a slightly lower level than the day before. We have been warned by the nurses not to burn out completely before Lyle comes home to us but we are almost completely unable to take a day off from visiting him. The best we've been able to do is, like tonight, leave the NICU a little bit early. Karen, Lyle's nurse again tonight, suggested that Paloma and I go on a date, use the NICU nurses as babysitters and have some "couple time". We will try, I promise, but for now we feel that we need to strengthen our connection to our son. He loves it when we hold him and talk to him. The only time he fusses is when his lungs are full of mucous. A simple suctioning clears up that problem and he hardly even notices it anymore.
• Anyhow, my point is: don't worry if I don't update. I probably just needed some sleep.
• The big news for today is that sometime in the next week Lyle will have an examination of his gastrointestinal tract to see if he is a candidate for reanastomoses (the surgical connection of separate or severed tubular hollow organs to form a continuous channel, as between two parts of the intestine). If his GI tract looks good then his small intestine will be reconnected with his large intestine. It could happen as early as this week. This is pretty exciting. Dr Skarsgard mentioned the possibility to us a couple weeks ago but since then we haven't heard anything further about it. Today both his nurses mentioned the upcoming tests. This would be a big step forward. But also a big step backward since he would be taken of his feeds for about a week. Still, the reconnection would put him that much closer to moving back to Dominican or even coming home.
• Paloma held Lyle for almost three hours today. It was a bit of trial for her since he slipped a bit and his ventilator tube almost pulled out (no big deal, Karen said that if it happened they would probably not reintubate him but let him try with just a nasal cannula again. Then part of his colostomy bag pulled away from his abdomen. Mercifully nothing spilled out on Paloma. Other than that it was just routine, a nice family time despite all the noise and bustle in his room.
• I have been thinking a lot about parenting over the last six weeks. Someone (was it you Wendy?) characterised parenting as a continual process of letting go. For most parents I think this is fairly benign. When your child learns to walk you have to let go enough to let him do so, to let him explore the world on his own. You let go again when he goes off to school for the first time. You let go some more when he learns how to drive. And even more when he goes off to college. I'm sure you can think of other scenarios that I've skipped. These are the little rites of passage from childhood to adulthood. There is another level of letting go that Paloma and I have had to face since Lyle was born. Before he was born we had our fantasies (is this the right word?) for how the pregnancy and childbirth would proceed: nine months of pregnant bliss followed by a short labour and pain-free delivery and then we would take home our happy and healthy baby. We have had to mourn the loss of that fantasy. We also had fantasies about what our son would be like and what he would do with his life. I saw him learning music and computer skills, maybe even being athletic. When we were told about his brain bleed and that he could have developmental problems and perhaps even some level of cerebral palsy as a result I had to let go of those fantasies. They really had nothing to do with who Lyle is anyway. They were my fantasies projected onto his little life. If he wants to become a musician or a computer programmer then I will do whatever I can to make that happen. But now it seems to me that the most important thing is to let him tell me who he is and what he needs. He will likely bring problems and challenges home with him but we will deal with them as they arise. I would welcome your thoughts on raising children. Feel free to email us or add a comment to Lyle's Guestbook.

• Then again, some days you just have to worry.
• We are greeted at the NICU by Kas with tears in her eyes. Lyle is septic. He has picked up an infection of some unknown kind. It could be another yeast. It could be a bacteria. It could be a virus. He has been put on two different antibiotics and will later be receiving the first dose of an anti-fungal. Just in case. He looks bad. His colour is bad, he isn't moving and he has stopped breathing on his own. He is "in phase", meaning that the ventilator is breathing for him. Lyle is very sick and his body is responding much as ours would. He is trying to fight the infection and he
  doesn't have enough energy to breathe. It hurts to see him looking so lifeless.
• Tests have been ordered to determine what he is infected with and where it is hiding. it could be in his blood or in his urine or in his cerebrospinal fluid. An x-ray of his chest has ruled out pneumonia. His lungs are still clear. One of the doctors tells me that an x-ray of his stomach rules out NEC. I am aghast. Not NEC again! He's already survived it once. Could it happen again? His doctor says that it could. That he is at risk because he had it once already. A simple test can rule it out so they do so.
• Kas assures us that her tears are not because they are hiding anything from us and apologises for being so "unprofessional". She says that she is upset for us, that we are faced with yet another setback first thing on arriving. I am touched by her tears for us. Somehow it makes the situation easier to bear.
• All the nurses are upset when something like this happens. They are as much invested in Lyle's progress as we are. Rebecca came over to talk with us and she was crying too. Missy, a visiting nurse we met yesterday, is surprised by the news. She gives Paloma a hug and assures us that Lyle will be fine. That the infection was caught early and the NICU response in such situations is aggressive.
• We sit and watch Lyle in silence, stunned by this development. Our poor little boy. And yesterday we felt so hopeful. He seemed to be doing so well.
• I ask Kas how Lyle could've got another infection. She tells me that it is distressingly common in hospitals. You don't want to be in a hospital unless you have absolutely no other choice. They have a strict hand washing policy but all it takes is one person to forget and touch our boy. I am consumed by guilt. What if we infected Lyle by holding him. I try to be good about washing my hands but sometimes I have to touch the door handle after washing up to let us into the room and I have never thought that I need to rewash afterwards. Kas says that Lyle would be at risk even if he lived in a sterile bottle and that the advantages of being loved and held by his parents far outweigh the risks of infection. I am somewhat reassured.
• Later, I notice that he has some mucous in his breathing tube and point it out to Kas who decides that he needs to be suctioned. Something goes wrong. All of a sudden the oxygen level in Lyle's blood drops and his heart slows. Alarms always go off when Lyle is suctioned. Gradually it dawns on us that this is not the usual. Kas calls another nurse over. Other nurses gather. Someone asks if they need a doctor. Kas says yes. We hear a page, "We need a doctor in room one." Kas is trying to bag Lyle to get oxygen into his lungs but the bag isn't working properly. Our son is dying. I want to scream, "do something!!" but of course they are. I see the other parents in the room looking at us nervously as the doctors gather, they know as well as we do that this much activity around an isolette is not a good thing. And then his heart starts again and his oxygen level goes up and it's all over. A lifetime spent in less than a minute. Lyle is fine. The doctor tells us that it was a vagal reflex. The vagus nerve, a long nerve which runs from the brain through the neck to the abdomen, was stimulated by the suctioning and he gagged and his heart slowed as a result.
• We had previously arranged for Jennifer to visit Lyle and play her harp for him again tonight. She arrived just before 6:00. All afternoon I have been wondering what to do when she arrives. Is it really appropriate for her to play when Lyle is so sick? We decide that it is. The whole feeling of the NICU changes when she starts. Voices are hushed. People start smiling again. Nurses gather in the doors to listen. Kas says that she has never seen anyone do this for a sick baby before. She is very touched. I feel myself relaxing a bit.
• Jennifer joins us for dinner on the roof. It is nice to just sit and chat about nothing much of anything. We decide that the bright star I have been assuring Paloma is Venus actually is Venus.
• Jennifer returns with us and plays for another couple hours after dinner. We leave a port of the isolette open so that Lyle can hear. He seems better already. Really he does. His colour is better and he is moving his arms and legs. He opens his eyes to look around him. He has even started breathing on his own for a bit. He breathes for a while and then rests and lets the ventilator do it for him. Still, I feel cautiously optimistic. Kas says that she wouldn't really expect the antibiotics to help until 24 hours after they were first started but who knows.

• Lyle was accidentally extubated this morning. Carol was changing his stoma bag and he was wriggling around and out came the tube. When I talked to her just before 9:00 he was resting after all this activity. I asked her if he looked peaceful and she said he looked like he was recovering.
• When I called the NICU this afternoon Carol told me that they have identified the bacteria responsible for Lyle's illness. It's enterobacter, a bacteria commonly found in the gut. They have changed his antibiotics to ones that work well against this particular beast: gentomycin and cefotaxime. He won't have to get a full course of amphotericin again after all.
• That Lyle's blood cultured positive for enterobacter is not a particularly good thing. It means that there may be another small leak somewhere in his intestine. As he gets bigger and his immune system is stronger such infections should become rarer but for now there is no guarantee that once this infection is cleared up another won't take its place.
• That being said, Lyle is looking better today. He is feisty. He moves around some more and is breathing a bit more on his own. As the antibiotics work over the next two or three days he should quickly return to where he was last week. Unfortunately the test of his gastrointestinal tract have been put on the backburner as a result of this infection. It has set him back a week or so.
• Jeannie came to visit Lyle this evening bearing gifts of brownies for Paloma and me and a stuffed elephant for Lyle. Having the support of our friends has helped immensely. Jeannie very wisely pointed out to me, with regard to my thoughts about letting go, that "parenting is such a deep thing that I don't think any singular platitude can ever encompass it." Yes, I was definitely guilty of stretching a metaphor a tad further than I should have.
• When we left him, Lyle was resting quite comfortably in the capable care of Paul. It was a real treat to see Paul again tonight. As previously mentioned he generally doesn't start until 11:00 but tonight he started early. He begged and pleaded with Lynda to be allowed to look after Lyle again tonight since he has done so for the last two or three nights and she very graciously allowed him to do so.

• In retrospect, perhaps the hardest thing to deal with yesterday was when Carol told us that she thought Lyle's day had been so rough that she didn't think he should be held. He had been handled so much that she felt he needed a rest. What should our response as responsible parents be? Of course we want what's best for our son but was it best for him not to hold him? Paloma thought that he would be comforted by his parent's touch. So much of our parenting is on the sufferance of the nurses. There is so little we can actively do for him at this point that being denied one of the few things we can do hurt.
• Today, however, Carol was ready. She gave him his medications early so that he would be fit to be held when we arrived. I got to hold him. She and Junn transferred him over to me. Once again he proved that being held by one of his parent's is just about the best thing going in his little life. He was calm and relaxed and he slept almost the whole time. He woke up a bit towards the end when Paloma returned from pumping and peeked out at her.
• Lyle is definitely perkier today. His blood tests show that he still has an infection but the antibiotics are helping him throw it off. He looks much better again. He has come up with a new trick. Instead of dropping his oxygen saturation when suctioned he now has an episode of bradycardia. His heart slows way down. He comes out of it very quickly but I still wish he wouldn't do that. It is in response to an external stimulus and so isn't highly worrisome. Once he's off the ventilator it won't be an issue.

• Lyle is a wild man. When we arrived today we found Kas at his bedside getting him ready to be held. As she was working around his isolette he was wriggling all over the place, grabbing at his ventilator tube and threatening to pull it out. I was quickly recruited to hold his hands while Paloma went to pump. I put my finger in his left had to keep it from grabbing the tube and right away he swung his right hand over and let it have a try. I ended up with a finger in each hand and the tip of another one in his mouth for him to suck on.
• As soon as Lyle was in his mother's arms he calmed right down. Kas commented that he loves to be touched and held. That's music to our ears.
• Noushin came by to give us a pep talk. She thinks that Paloma and I should have a vacation. Go away somewhere nice (she said Hawaii) and try to de-stress a bit. She's been playing this song the last few times we saw her and I think we're going to take her advice. Paloma and I spent a fun weekend last year in Mendocino and now we're thinking to take a long weekend later this month and return there. I think we'll stay at St Orres again. It's funky and strange but they serve a mean breakfast. Noushin also gave Paloma permission to sleep all night. She said that Paloma should not give in to the dictums of the militant lactation consultants (pump every two to three hours with at most a five hour break for sleep or else!!). Until now she has been pumping at midnight and then again at 5 a.m. and 7 a.m. But now (luxury!) she can pump last thing before going to bed and then when she wakes up in the morning. Oh boy, a full night's sleep at last!
• While Paloma was holding him we had a brief visitation with Dr Moss. The current plan for Lyle is to hold off on any surgery for another two or three weeks. He wants Lyle to be at least 2 kilograms because this operation is likely to be an intensive one. Not only will the small intestine be reconnected to the large intestine but any strictures (areas where the intestine has narrowed abnormally) will have to be removed. The longer he waits before the operation the better are the chances of finding all the strictures at once, which makes the need for subsequent operations less likely. This delay is, however, unfortunate since it means that Lyle will likely remain at Packard Children's Hospital until pretty much his expected due date. We were hoping that he could be moved back to Dominican a bit earlier to give us a break on the commute. Oh well…
• Then we met Ruthann. She's working on an article for a magazine on the NEC surgery trial which Lyle is enrolled in. We'd agreed to be interviewed by her for this article. It was interesting trying to remember that night six weeks ago when we learnt that Lyle was seriously ill and needed surgery. We were both pretty exhausted and to then have to assimilate all the information about what had happened to him and what was needed to correct the problem was almost impossible. At the time I had some vague altruistic thought that we could help the furtherance of medical science by allowing Lyle to be enrolled in this study. I don't find it so cut and dried any more. On thinking about it now I can't help wondering if Dr Moss presented the information about the surgical procedures in such a way as to push us in the direction of joining his trial. My chief recollection of that horrible morning is of him explaining what the two possible operations were, then telling me that there wasn't enough data for him to recommend one over the other and finally asking me to choose. How can I make that kind of decision based on half understood facts presented at five in the morning? Things I've heard since then have led me to believe that Lyle got the right surgery. It was much more invasive than the other option but if I had dead tissue inside of me I think I'd want it removed rather than left to be reabsorbed. Of course it's easy for me to say this with 20/20 hindsight.

• Well, we've had a slight change of plans. After spending the morning on the phone checking availability Paloma concluded that St Orres just wouldn't work. The first weekend they have a free cabin (in our price range) is in December and we're hoping that Lyle will be home by then. So instead she booked us into the Cypress Cottage of The Inn at Schoolhouse Creek. We'll be there from Friday, November 10 through Monday, November 13. We stayed there last year too and so this year we get a 10% discount on our room. We're already looking forward to the trip. When we told Karen, Lyle's nurse this evening, she said that if she was working that weekend she would hold Lyle for us so that he still got some love and attention. On hearing that I almost, but not quite, felt guilty enough to call the whole thing off.
• Once again Lyle was wide awake when we arrived only to go right to sleep as soon as he was transferred into my arms. And, of course, he wakes up again as soon as he is returned to his isolette. What a little punk!
• He's recovering quite well from his infection. They tried to get a spinal tap the other day to see if he had meningitis (which an inflammation of the membranes enclosing the brain and spinal column caused by a bacteria or viral infection) but weren't able to do so. Someone may try again tomorrow or they may just extend the course of his antibiotics to be really certain of wiping out all the infection. Gayle, his nurse this morning, thought that he might've had some infection in his lungs as well which would explain why he was unable to stay off the ventilator last week. We hope that he will be well enough to be extubated in the next couple of days.
• He should also start on PO (by mouth or, in Lyle's case, by nasal-gastric tube) feeds again in the next day or so. The doctors probably won't push him back up to 4 cc's per hour. Instead they will likely leave him at 2 or3 cc's. Enough to keep his stomach working but not enough to over stress his system.
• The other big news is that he now weighs 3 lb. 13.5 oz. He has a double chin (if he holds his head just right) and there's some meat on his butt now.
• Lyle is seven weeks old today.

• Oo, scary! Oo, Friday the 13^th!
• When I called the NICU this morning I wasn't able to talk to Linda, Lyle's nurse, since she was assisting the doctor giving Lyle his eye examination. Paloma called back later and Linda said that Lyle's eyes were somewhere between undeveloped and Grade 1. I'm not quite sure what this means. I'm sure that Dr Rhine explained the different grades of ROP to us and I'm pretty sure that the lower the grade the better. I need to talk to a doctor again.
• Paloma was the designated holder today. We're getting so used to the routine that we're now acting as the nurse's helper during the transfer. Today I got to take the ventilator tubes from the isolette and pass them across to Karen while she picked up Lyle and deposited him on Paloma's chest. In a very self-serving move Karen decided to give Lyle a puff of air before completing the transfer. She admitted that it was just so that she got to hold him for a bit.
• After Lyle was settled I taped the ventilator tube to Paloma so that it wouldn't shift around so much. I ran the tape from her shirt onto her bare arm. When it was time to remove the tape Karen made me take it off because this tape sticks like a particularly nasty Band-Aid and she didn't want to be the one earning Paloma's wrath. I peeled it off as gently as I could and then apologised saying, "I'm sorry honey but I had to put the tape there to keep our baby safe." Karen pointed out that whenever a man apologised he always included a justification. She said that we (men) would get better mileage out of our apologies if we just stopped after "I'm sorry honey". Okay, point well taken. I will work on my apology style.
• I read some more of My Family and Other Animals to Paloma and Lyle during our quiet family time. After dinner we were looking at the book rack outside the Family Resource Centre and Paloma found a copy of Where the Red Fern Grows and she decided that since I had never read it before now was the time to do so. She started reading it to me as we sat with Lyle before heading home.
• Lyle now weighs 1799 grams! This is within spitting distance of 4 lb. Karen decided that he was big enough that his isolette didn't need to be on skin control (this is where a temperature probe is attached to his skin and the isolette determines how much heat to supply in a nice little feedback loop). Instead the isolette just maintains a steady temperature and Lyle regulates his own body temperature. That's one less probe to deal with.

• You know, today was kind of boring. Nothing much is happening to Lyle and our time with him was pretty much just the usual routine. I held him. Paloma read to us. He slept until his diaper was wet. He fussed. We put him back in the isolette. One of the nurses said to Paloma, "there's nothing like the sight of a hairy chest, it's good for the baby and good for the nurses."
• Lyle continues to pull on his ventilator tube. It makes me very nervous to watch him since he seems set on the idea of removing the damn thing entirely. Noushin was thinking about helping him out. It really is time for him to be off it.
• We left early so as to make it back to Santa Cruz in time for the first concert of the 2000-2001 season by the Santa Cruz Chamber Players. It was music by various members of the Bach family. After the concert Steve and Robert came back to our place for tea and conversation. It was a nice and normal way to end the day.

Morning…

• Lyle was extubated at 10:00 this morning. He is now on a nasal CPAP machine. I wish he was back on the nasal cannula but that will come with time. This is a big step in the right direction. I hope he can handle it.
• Nancy stopped by to visit in the late morning. It was nice to just sit with her, drink tea and chat about raising babies (among other things). She said she could very clearly remember the first time her son took a tentative step. She was torn between the joy of this first step towards independence and the certain knowledge that she could no longer completely protect him from harm. When she could carry him from one place to another he was safe. (I paraphrased a much longer and in depth conversation, I think I've captured the gist of it but, Nancy, correct me if I'm wrong.)

Evening…

• We got to hear Lyle crying today for the very first time. He was telling us he was unhappy in his very own voice. Before we could tell that he was crying by his facial expressions but no sound could make its way around the ventilator tube. He settled down very quickly.
• At one point, right after he'd had his diaper changed and just before Paloma got to hold him, his oxygen saturation dropped off. As we watched it went from nearly 100% all the way down to the low 20's. His colour changed as he became cyanotic. He got kind of dusky and blue. Noushin worked fast and got him bagged. As she squeezed air into his lungs his colour improved quickly. One thing about the ventilator, when he de-satted it was never quite this far. If such a situation lasts for too long then he could suffer brain damage.
• Paloma held Lyle today. She got to take him in her arms and look into his face. The nice part was that he no longer had tape over his upper lip. The not so nice part was that the nasal CPAP device covered large portions of his face and he has a tube taped to his chin. This goes down into his stomach and allows any air that gets in there to be drained off.
• Jennifer showed up shortly after we did with harp in tow. We're always getting the nurses asking when she will be there again. Noushin was very pleased to actually be there looking after Lyle when Jennifer was playing. I got to be the page turner (a job which is not too demanding and which I messed up at least once despite its simple nature). At one point I looked around and a nurse from another room was sitting in the doorway to our room feeding the baby in her care. She'd brought the baby over, IV's and all, to hear Jennifer. Dr Christina Anderson later told Paloma that while Jennifer was playing she'd gone around and checked on the babies in the room and they were all doing noticeably better, every baby had a slower and calmer heart beat.

• Lyle continues to have episodes of apnea. He's just so used to being on a ventilator that he forgets that he has to do all the breathing work. So he stops. Breathing that is. Usually he comes out of it on his own but sometimes his nurse has to give him a helping hand. When he was on the ventilator it didn't matter. It had a backup rate that supplied him with a certain volume of air whether he took a breath or not. To help his breathing the doctors started giving him IV caffeine again. It apparently stimulates the smooth muscles in the chest and reminds him breathe on his own. Still, it's very strange to hear the doctors talking about a "therapeutic levels of caffeine" in Lyle's blood. Last time he was on the caffeine one of the doctors joked that they would keep him on it until he could order a double latté on his own.
• Today was unusual for us in that we both got to hold Lyle. I went first and then Paloma got him after dinner. Caroline was his nurse and she managed to get him out of the isolette without any help other than what we provided. I guess the good part about having him on the nasal CPAP device is that he will still breathe even if he's temporarily disconnected. The bad part about having him on the nasal CPAP is that (as you can see from today's photographs, in Lyle Bartley Vachon, part 8) the apparatus is extremely awkward. Paloma had an awful time with it. She held him facing up and every time he turned his head the tubes would slip to one side pulling out the nose piece. I think it must have hurt him too since he would cry whenever the tubes slipped. He got very upset. I think it was a combination of the CPAP device and all the noise (other babies crying, nurses talking and so on… sometimes it is hard to hear yourself think) in the room. We just can't wait until he gets to come home where life is ever so much calmer.
• We have decided to take a day off. We are not going up to the NICU tomorrow. Our decision was supported by Caroline. She felt that we should take at least one day off a week. She says that we're not doing Lyle any good if we wear ourselves out before he even gets home. I'm already feeling guilty about it.

• I walked to work this morning. There is one street that I have to cross where there isn't a stop sign (for those of you who know Santa Cruz, it's the crosswalk at the end of Church Street where it meets up with Chestnut Street). In my usual cautious fashion I stood at the crosswalk waiting for a break in the traffic. Several cars sped by from the left. When I looked to the right I saw a CHP motorcycle officer coming down the hill from Mission Street. I looked to the left and saw a yellow motorcycle approaching. When I looked to the right again the CHP officer had stopped at the crosswalk to let me cross. At that moment the other motorcycle zoomed by. The CHP officer threw up his hands and yelled at the guy. I waved my thanks to the officer and crossed the street. He then did a quick U-turn and sped off after the yellow motorcyclist. I certainly wasn't expecting the traffic to stop for me but this officer obviously thought that it should.
• Lyle is doing fine. When I talked to Carol, his nurse this morning, she said that he was going to have another eye exam later this morning. Other than that nothing much was planned for him. Paloma called just after noon and apparently his eyes were unchanged from last week. We talked to Dr Rhine yesterday about it and he said that with luck Lyle's eyes would not get any worse than Grade 1. If they did some sort of intervention would be required, perhaps laser surgery.
• Paloma and I met downtown and shopped for Christmas presents at the Bookshop Santa Cruz. Time is passing by so quickly. Well, maybe quickly isn’t quite the word I should use. It's just that our days are so full. I keep telling Paloma that our friends and family will understand if we're a bit lax about Christmas gifts. Right?
• After that we had dinner at the Royal Taj. It's really one of our favourite restaurants in Santa Cruz and we haven't had a chance to eat there in ages. It was very nice. In case you are interested, we had a basket of assorted breads (garlic nan, murgh nan and aloo paratha), vegetable biriyani, fish tikka kababs and aloo mattar. We also had two cups of chai each, which is why I am revising this posting at 2:00 a.m.
• And once I'm finished with this update we're going to watch an episode of Buffy the Vampire Slayer, in my opinion one of the finest hours of television entertainment available. We have three weeks worth on tape demanding to be watched.
• It definitely felt strange not to be at our son's bedside today but we'll be back there tomorrow.

• My poor sweet wife. It's bad enough that she had to have surgery while pregnant to remove an ovarian cyst (which was, ironically, done to prevent one of the possible side-effects of cysts which is pre-term labour) but now, adding insult to injury, she has to have another operation. As I think I mentioned previously, an ultrasound during her pregnancy showed that she had gallstones which probably accounts for the occasional bouts of extreme gastric distress which she has had over the last three or four years. We consulted with a surgeon this afternoon about the situation. He said that her gall bladder is broken. They could remove the stones but the gall bladder will just continue to make more of them. So now Paloma is facing a laparoscopic surgery to remove the damn thing. That will probably happen towards the middle of November. Preferably before Lyle comes home. She will be unable to drive for a week after surgery. With luck Lyle will be at Dominican by then so that she won't have to endure these long car trips to Palo Alto to see him.
• That nasal CPAP (continuous positive airway pressure) device has got to be uncomfortable. It has these rubber prongs that stick into Lyle's nose which are attached to a (relatively) huge plastic structure. The hoses from the air pump attach to this plastic structure. One hose provides the air, another monitors the air pressure. The last hose acts as a muffler, it pipes the noise of the rushing air out of the isolette. All these hoses have to be positioned perfectly so that the rubber prongs stay in Lyle's nose. Unfortunately, the slightest movement on his part causes the weight of the hoses to shift which causes the prongs to dislodge which causes the pressure monitor to send an alarm to the air pump which causes lights to flash and annoying bells to ring. The problem is even worse when Lyle is being held. We watch to make sure that all the lights on the air pump are the proper colour (indicating that he's getting the right volume of air with every breath). If one of the alarms goes off then we have to try to re-position the hoses to make the alarms stop. Every time we mess with Lyle's CPAP nose piece he gets a bit more irritated and thrashes around even more. It's a vicious circle. Today when Paloma was holding him he got so agitated that he was crying and pushing away from Paloma in an attempt to get away from the nose piece. Dr Rhine happened to be right there at the time and he and Noushin decided to give Lyle a try completely off the device. Noushin hooked up an oxygen mask to so that there was a continuous flow through a face mask. Then she took off the CPAP device and gave Paloma the mask. If Lyle's O2 concentration dropped below 95% then she was to move the mask closer to his face. That was it. Lyle settled down almost immediately and went to sleep. It must've been a blessed relief to get that infernal device off his face. Plus it was great for us to see all of his face for a change.
• While Paloma was holding Lyle, Dr Rhine came by to ask if he could videotape the process. He's putting together an informational video for mothers who may have preemies to help de-mystify the NICU. He wanted to show that it was still possible (even desirable) to hold small babies that were attached to all sorts of life support equipment.
• Before she put him back in the isolette, Noushin weighed Lyle. It was simple to do it without the CPAP device in place. All she had to do was pick him up off Paloma's chest and then plop him down on the scale while making sure that none of his tubes or wires was touching. He weighed in at 1940 grams which is about 4 lb. 4.5 oz. He's closing in on the magic 2000 gram mark.
• Dr Rhine told us that they will be doing some studies of Lyle's gastrointestinal tract next week to see if he's ready to be re-connected. This is excellent news. The sooner he gets that done the sooner he can come home to us.
• We came home early and watched some more of our taped Buffy the Vampire Slayer episodes.

• Lyle is 8 weeks old today. Time flies. Paloma baked an applesauce cake for the NICU staff to celebrate this milestone. The nurses were very enthusiastic. Give them something sweet and they flock like fruit flies to a ripe banana.
• He is now allowed to be off his nasal CPAP for one hour out of every eight hours. They call it "breathing practice". We're encouraging the nurses to arrange it so that our time there will coincide with one of his practice sessions. That's what happened tonight. Carol extracted Lyle from the CPAP and strapped him into a nasal cannula (which just supplies a flow of oxygen). Then she arranged him on my chest. It's so much less hassle this way.
• Dr Rhine appeared with his digital video recorder (amidst jokes from the nurses about boys and their toys). He said that he didn't have footage of a dad holding a baby and that I was volunteered. He recorded me and Lyle (the latter looking very comfortable indeed) and then showed his isolette. At some point his video may appear on the Lucile Packard Children's Hospital web site. No guessing when. He said that he'd have to get his eight year old (or was it his eighth grade son?) to help him edit the raw footage.
• After dinner Lyle was wide awake, looking around and just generally appearing very happy and playful. He grabbed the CPAP device a couple times and partially removed it. He also removed his oral-gastric tube at some point during the evening and Paul then had to replace it. The procedure is pretty slick. He measured the tube from his left ear to his mouth and then to his solar plexus. That gives the exact length needed to insert the thing into his stomach. Lyle was such a trouper. He hardly fussed at all as it was inserted. I'd've been kicking and screaming and gagging the whole time.
• He now weighs 1998 grams, about 4 lb. 6 oz. That's up two whole pounds from when he was born.

• Apologies for taking so long to make updates available the last few days. I've been so tired on getting home that writing a diary entry is almost the last thing I want to do. I will try to write something for every day but it may take a day or so to get it posted. Actually, the last few days have been so uneventful that sometimes it's hard to come up with anything worth saying. I will, however, struggle on.
• Lyle seems to find life on the nasal cannula difficult. When Paloma was holding him we could hear his breathing. It sounded very laboured at times. Still, the oxygen level in his blood remained good. He would just have periods of very fast breathing interspersed with more relaxed times. When he was returned to the isolette (and had the nasal CPAP device attached again) he had an episode of bradycardia. His heart slowed (from around 150 to around 50 or 60 beats per minute) and his breathing slowed (from 70 or 80 to less than 20 breaths per minute) and his oxygen saturation dropped (from the high 90's to 40 or 50). Paloma and I quickly tried to stimulate him to get him breathing again by touching and stroking but it took a long time for him to recover. The frustrating part was that his nurse was working on the other baby in her care and she ignored all the alarms from Lyle's monitors. Another nurse had to come by and deal with it. I think the volume of air being provided through the CPAP was too high and he was reacting to that. Junn, the respiratory therapist (who, by the way, pronounces his name "June" which is short for "Junior") came by and turned down the air volume a bit and Lyle quickly relaxed and started looking much better. I hope they don't use this episode as justification for not letting Lyle have a break from the CPAP. You try living with air blowing in your nose all the time and see how you like it.
• Another incident I almost forgot. Lyle's nurse decided to change the tubing for his TPN and lipids while Paloma was holding him. It was also time to change all the tubing. Have I ever explained how this all works before? Well, the TPN and the lipids are in two separate bottles. Both are to be fed into his veins through the broviac catheter. This is achieved by using a Y-type structure. Each arm of the Y takes one of the bottles and the mixed result is passed to Lyle through the tail of the Y. If more stuff needs to go into his veins they just add in another Y so that the tail of the first one feeds into the arm of the second. This would give them three ports to use. Lyle was receiving his antibiotics so three ports were needed. His nurse added in another Y but forgot to clamp off the free end. I looked over and saw a rather disgusting mixture of blood and sugar water (TPN) dripping out of the unsecured end onto the rocking chair and onto Paloma's shirt. It all got cleaned up eventually but it was not a move calculated to instill great confidence in Lyle's eagle-eyed parents.
• Other than that Paloma and I sat by the isolette and took turns reading to Lyle (and each other). Sorry, it's not wildly exciting but we really like the boring days.

• Karen's back, yay! She was actually working yesterday but got sent out on a transport job. She brought a baby back from San Luis Obispo. She got to fly down there in a small plane. Imagine living that far away from the hospital looking after your baby. For those of my readers who are not familiar with the towns in California, it's about 200 miles from San Luis Obispo to Palo Alto.
• It was my turn to hold the baby today. He was pretty much happy throughout the entire time. I find holding Lyle while he's on CPAP to be a rather perilous affair. Both his CPAP machine and his vital sign monitor tend to sound the alarm at regular intervals. Often this means that the prongs of the nose piece have slipped out of his nose. This necessitates an adjustment of either the nose piece or the head piece (the fancy little stocking cap you can see in the photos). It's a major pain.
• Just before the shift change Karen weighed Lyle (2055 grams = 4 lb. 8.5 oz.), he has more than doubled in size since he was born. Then Paloma and I helped wash him. It was so cool. He was wide awake and really seemed to enjoy the attention. He kind of gurgled and smiled and was just delightful. Karen and Paloma washed and I applied Aquaphor (a preemie-safe ointment) to the dry skin on his body.
• Bruce and Karin arrived unexpectedly right at the shift change. Karin and Paloma had lunch last Thursday and she said that they might come and meet Lyle but we weren't expecting them so soon. We went out for dinner together and then took them back to the NICU to see our little boy. Bruce wondered what the long term effects this experience would be on the three of us. He thought Paloma and I were more in tune with each other. I figure that most problems we have in the future (if any!) are going to seem pretty small after this one.

• Last night we told Karen that we were going to sleep in this morning and then go out for brunch. Today she admitted that when she heard that she was thinking, "enjoy it while you can." She got home at 3:00 a.m. this morning only to have her 2 and a half year old son wake her at 7:00 because he had slept enough and wanted to do stuff. She made her husband deal with it.
• So, we slept in and then went to Kelly's Bakery for brunch materials. They have a wonderful house-made yogurt which goes really well with fruit. That and a couple pastries and we were set. It was a lovely sunny day (if a bit windy) and so we walked downtown.
• After the shift change Karen was Lyle's nurse again. She got Lyle into Paloma's arms almost right away. While Paloma was holding, Barbara (Paloma's younger sister) came to visit. The last time she had seen Lyle, other than in photographs of course, was on the night he was born. I think she was quite impressed by his progress. She said that she would warn her son (Philip, now just over six months old) not to mess with Lyle 'cos with Lyle's daddy being a six footer he would likely pass Philip by at some point. Both Philip's parents are more modestly proportioned.
• One of the issues that I have been trying to understand is why Lyle had the intra-ventricular hemorrhage (brain bleed) and the necrotising enterocolitis (perforation in the wall of his small intestine). There's still a lot of guesswork involved but the story as I understand it goes as follows. There were probably two separate mechanisms at work here. Lyle was under a lot of stress when he was born. Stress that he wasn't really ready for. Now, the body's response to this kind of stress is sometimes called the "fight or flight reflex". Various hormonal changes occur in the body which in turn cause changes in the flow of blood (among other things). Blood is shunted to the heart, lungs and brain and away from less useful organs such as the stomach. This increased flow of blood to brain is actually a bad thing in a preemie. His veins and arteries were not ready for the extra blood and so they tore spilling their contents into the ventricles of his brain. This is not a place where blood should be. The lack of blood flowing to his stomach had another disastrous effect. It caused a portion of his intestine to die. The other mechanism was that after he was born Lyle had an open (or patent) ductus arteriosus commonly called a PDA. For his survival this had to be closed. If you ever hear talk of an infant's heart murmur they are probably referring to a PDA. It's not a good thing but is very common in premature babies. Basically it is a sign that they are not yet ready to be an air-breathing mammal. Lyle was given a drug (indomethicin?) which acts to close the ductus. Unfortunately, one of the possible side-effects of this drug is NEC. This kind of makes sense, if the ductus is closed by this drug then other blood vessels could be as well including those providing blood to the intestines. At this point Lyle was "NEC waiting to be fed". He was asymptomatic even though a portion of his small intestine was dead. As soon as the food he was receiving reached the dead section the wall ruptured spilling bacteria into his abdomen. This was a very bad thing. What does this mean for the future? Basically we cannot ignore Lyle if he ever complains of a stomach ache. It could be a sign of some complication of his NEC and the surgical interventions which he has undergone as a result.
• Sorry, that was probably more than you wanted to know. On to more cheery stuff. Paloma decided that she needed to go pump and she wondered if I would like to hold Lyle. Well, I didn't want to usurp her turn but what the heck. Karen let us perform the transfer ourselves. What an accomplishment. It was really good to know that we didn't need a nurse's help. Paloma stood up holding Lyle. I sat down. She placed him in my arms. We made sure that the CPAP was in place and that none of his wires were tangled up and that was that. Every day we get to do a bit more for him.
• Tomorrow Lyle gets his lower gastrointestinal tract study. They will administer some barium (as an enema I think) and then x-ray his belly to see how it looks. They will be checking for strictures (places where the intestine narrows which could trap food). On Thursday they will check his upper GI tract. If all looks good they could reconnect him the following week. Keep your fingers crossed.

• Lyle went for his lower GI tract study this morning. Apparently it was a grueling procedure. They wheeled him down to x-ray in his isolette, gave him a barium enema (I didn't even want to ask how they accomplished that) and then x-rayed his abdomen at regular intervals. The barium is opaque to x-rays and so the doctors can use the pictures to see all the nooks and crannies of his intestines. They had him down there for about an hour and a half. The doctors were looking for perforations and strictures (abnormally narrow areas) and other oddities. The unofficial report (given us by Donna McMillan, MD, one of the interns helping care for Lyle) was that his colon was small but that this is expected given that no food has been passing through it for the last seven and a half weeks. Other than that he's looking good. If the upper GI tract study on Thursday goes as well then he could get the surgery to reconnect his intestines as early as next Monday (the 30th of October). This is really good news.
• The other good news is that while he was having the GI study they took him off the nasal CPAP and had him on a cannula instead and he tolerated it really well. So they are going to reinstate the "sprints". He will get to be off the CPAP for two hours out of every eight hours. If he continues to do well they will increase his time off by an hour per eight hours per day. Hmm... what I mean is that tomorrow he would get three hours off out of every eight. The next day four hours off out of every eight. And so on.
• Paloma decreed that I was to hold him again today. She said that she'd had her turn yesterday and that she'd voluntarily given up half of it so that I could hold. Therefore it was my turn again. I felt that since I'd held him most recently that she should get the next turn. But you try arguing with her when she has her mind made up.
• Caroline, Lyle's nurse this evening, is actually more than prepared to let us hold him both before the 7 o'clock shift change and after it. Except she felt he'd been handled so much already today that it would be better to just have one hold. Lyle was pretty exhausted. He slept through much of the transfer and went right back to sleep as soon as he was comfortably settled on my chest. Then, at 6 o'clock it was time for his sprint. Caroline removed the CPAP and taped the cannula in place. He hardly even noticed. His oxygen saturation stayed good and he had no episodes of bradycardia at all. Donna had told us earlier that they'd upped his dosage of Lasix (this is the diuretic they use to ensure that his weight gain is real and not just fluid retention). Apparently his lungs had been a bit wet and this change should help correct that problem. Subjectively, he seemed much more stable today so I think this was a good call.
• There are several unfortunate side-effects of being on the nasal CPAP. The first is that his nose is getting pulled out of shape. The pressure is all upwards so he's getting a little hog nose. I suggested to Paloma that we both tape the tip of our nose to our forehead so that we'll look more like Lyle. She wasn't too impressed with that idea. His nurses assure us that this nasal deformity is just a temporary thing. That his nose is just cartilage that can be massaged back into shape once he's off the CPAP. The second is that he has deep grooves in his cheeks from the straps used to hold the CPAP to his head. Again these are just temporary. As you can see from today's pictures, he sure looks cute when all the devices are removed.

• Paloma was contacted by her surgeon this morning. Her gallbladder removal is scheduled for Monday, November 6. She has to check in to the hospital by 8:45 that morning. Talk about a complication. Chances are good that she will be released from hospital the next day. We're still planning on taking our getaway trip to Mendocino on the 10th. The nurse said that Paloma will be weak but that as long as we weren't hiking huge distances she should still be able to enjoy the holiday. I don't know what I'm going to do. Do I sit with my wife on the day of her surgery or do I make the trip up to Stanford to see my son? Talk about being torn in half. Paloma's mother will probably come out from Nevada to help out while Paloma is recuperating. That should make it a bit easier.
• Lyle continues to do well on the nasal cannula. He now gets three hours off the CPAP and five hours on. He rarely de-sats anymore.
• Carol had three babies to look after today. One by each door. She was so busy she was almost reluctant to take Lyle out of his incubator for Paloma to hold. It was very frustrating for us. We watched her looking after one of her other babies and ignoring us. Time ticked away. We arrived at five o'clock and she didn't even do much more than acknowledge our existence with a smile before quarter to six. Meanwhile we were watching the clock anxiously knowing that we would be kicked out of the NICU at seven for the shift change. Finally she came by and I asked if she could take Lyle out so that Paloma could hold him. This didn't fit with her plans. She said that he was to remain on the nasal CPAP until quarter past six then she would put him on the cannula and then let Paloma hold him. I pointed out that this would mean that he'd only get held for half an hour or so. Then I asked her if we could take him out. After all we've watched it done and helped out often enough. It's not like with the ventilator where you pretty much need a respiratory tech to make sure that nothing goes wrong. The CPAP device is much more forgiving. She didn't like that idea. She wasn't sure that the hospital regulations would allow that. But, fortunately, this suggestion made her reconsider. She put him on the cannula early and then let Paloma hold. Whew! I later apologised to her for being so pushy. She also apologised saying that having the extra baby (usually the most they do is two babies per nurse, I gather the NICU is short staffed currently and the three babies in question are doing really well) made her feel very rushed. Like she couldn't lavish attention on any one of them.
• While Paloma was holding Lyle one of the surgical team came to talk to us. He confirmed what we'd heard about the lower GI study and said that they weren't anticipating any problems to appear in the upper GI study. Mostly they just wanted advance notice of what to expect when they opened him up. He said that the operation could last between one and four hours. For Lyle it would likely be less than two hours. Then they would watch him for his first bowel movement. That could take three or four days. Then they would start feeding him. He thought they would get him up to full feeds in four or five days after that. When I relayed this information to his nurse later she said that the surgeons tend to be rather gung ho and that the NICU staff are a bit more conservative but that he would likely be at full feeds a week after he starts feeding. I asked the surgeon what the long term effects would be on Lyle. He said that the surgery had removed about 18 cm from about 200 cm of intestine (small plus large). He didn't think there would be any noticeable problems.
• After dinner Lynda was his nurse. She hadn't seen him for a while and she was concerned that the output from his stoma was looking a bit bloody. She took it and said that it tested positive for blood. Susan Hintz, MD, the neonatologist currently in charge of the NICU, felt that it probably wasn't anything to worry about but she ordered some tests just to be sure. I imagine we'll find out more details tomorrow.
• Paloma took the opportunity to ask Dr Hintz if there were any hospital regulations that would prohibit us from removing Lyle from the incubator. She said that we should ask the nurse first so as to not step on any toes.
• This being Tuesday it means that Lyle gets weighed and he gets a clean isolette and it's bath time! She was just waiting for us to show up to help her out. She unhooked him from all his monitoring wires and then took him out again. He weighs 2085 grams or about 4 lb. 9.5 oz. His weight gain has slowed a bit since the upped his Lasix dosage. The Lynda held Lyle while Paloma washed his hair. My impression through all this was that it would go a lot faster without us. After his bath Lynda wrapped him up in a clean cloth and plunked him down in Paloma's arms. You may be wondering why Paloma got to hold him again... well, I said that we should play Rock, Paper, Scissors to determine who the lucky parent should be. Paloma was quite happy that she'd won (Paper covers Rock) until she realised that it meant that she'd be holding Lyle again. She really wanted me to have a turn. While we watched and talked to Lyle, Lynda changed his isolette. She is very efficient. She knows exactly what she wants done and she does it without wasting any time.
• The nurses who know Lyle are starting to talk seriously about his being home for American Thanksgiving. That's on the 23rd of November this year. This would be wonderful. Of course we know that things can go wrong at any time but it's nice to hear a concrete release date being mentioned. With luck he can be transferred to Dominican sometime before then making our lives a bit easier.
• Lyle is two months old today. It's hard to believe, isn't it?

• On arriving at the NICU around 5:00 Barbara told us that she'd just put the eye drops into Lyle's eyes because Dr Gaynon would be by at any minute to give Lyle his weekly eye examination. On hearing this I immediately began to feel queasy. Barbara asked if we'd ever seen A Clockwork Orange. Do you remember the scene where Alex is being conditioned? They clip his eyes open and make him watch violent films until he can no longer do violence himself without feeling sick. Dr Gaynon uses metal clips like that to hold Lyle's eyes open while performing the exam. She said that she'd ask us to step out while the doctor was doing his thing since it can be very disturbing for parents to watch. Since he was due at any minute she felt that we shouldn't hold Lyle until afterwards.
• We asked Barbara about the blood in the output from Lyle's stoma and she said that she'd asked Dr Skarsgard, one of the chief surgeons at LCPH, and he said not to worry about it. Barbara said that if anyone else had told her that she'd have pursued the matter further but that he was just so good that if he wasn't worried then she wasn't worried.
• Then we waited. And waited. Time crept slowly by. I read some more of Dragon's Bait (by Vivian Vande Velde) to Paloma. (Did I mention that I finished reading My Family and Other Animals a couple of days ago?) We watched the clock. Finally at 6:45 it was obvious that the doctor was not arriving soon. We went off and had our dinner.
• Despite the rain yesterday we were still able to eat on the roof. We found a dry bench and sat out watching the dark clouds pass overhead. It sprinkled a little bit but not enough to drive us inside. We're really going to suffer when we don't have a calm and private place to go for dinner.
• On returning to Lyle's bedside we found Janet looking after him. She said that Dr Gaynon had arrived right at 7:00 and had performed the eye exam before she'd even had her report from Barbara. Lyle's eyes are at Stage 1 now but no orders have been written. As a precaution Janet is uncovering
  Lyle's isolette so that he gets more light in there. This can apparently help reverse or slow down Stage 2 ROP so she decided to start now rather than wait.
• Paloma asked Janet if she'd let me hold Lyle for a bit since we'd missed our time before dinner. She readily agreed. She took him out of the isolette, weighed him (2145 grams - almost 4 lb. 12 oz.) and then wrapped him up in a blanket before putting him in my arms. He was quite calm about it. If I'd had an eye exam half an hour before my nerves would still be jangling but he just seemed sleepy. Paloma read some more of Where the Red Fern Grows to us.
• Dr Hintz came by and we took the opportunity to talk to her about what life with Lyle would be like once he came home to us. Would he have to be quarantined for a while? When could he be moved to Dominican? She felt that he wouldn't need to be placed under house arrest. She said we should just exercise some caution when exposing him to other people. Don't let anyone sneeze on him, for example. Of course we will have to balance the risks with the needs of day-to-day life. Shopping needs doing and we can't control the health of every single person in the supermarket. She felt that once he was doing well on his feeds that he could be moved to Dominican for the final fattening up. If the surgery happens next week then he could be moved to Dominican maybe two or three weeks after that. What a change that would make in our lives!
• Oh, and one other positive change. Lyle is now sprinting four hours out of every eight. That's four hours on the nasal cannula and four hours on the CPAP device. Apparently he hardly even notices the difference.

• Today is my 42^nd birthday. Paloma has been bugging me all week asking what I wanted for it. I kept coming up blank. Turns out she already had an idea. She bought me a beautiful wooden music stand. We saw them at the Berkeley Festival & Exhibition last summer and she has been keeping in touch with the maker ever since. She had it hidden away in the attic. I had no idea.
• In honour of my birthday we headed up to the NICU early. We left around 3:00 instead of our more usual 4:00. It was raining hard on the way up. Traffic was very slow. I was glad that I was being driven not driving. At times the visibility was nonexistent. Still, cars streamed past us seemingly unconcerned by the weather. It must be nice not to fear the elements.
• When we talked to Lyle's nurse this morning she said that he should be going for his upper GI study at 2:30 so we knew there was a chance that he'd be gone when we arrived. Sure enough, we were met at the door of NICU by Barbara who informed us that he was still down in radiology. Paloma asked if we could go there to be with him. One of the other nurses said of course and gave us directions.
• When we found the room we could see his isolette through the door. He was up on the x-ray table padded all around with towels. He looked so sweet. He was very alert, staring around at everything. We don't often get to see him from above without his head being twisted to one side or the other so it was a real treat to see him looking so ordinary. Karen showed us his stoma bag. Barium (a chalky white substance) had already starting to move into it.
• Shortly after we arrived the radiologist told us that he'd got all the pictures he needed and asked if he should call transport to help us back to the NICU. Since his doting parents were there Karen decided to use us instead of waiting around for some other hospital staff (who were apparently being run ragged today). So I pushed and Karen pulled and Paloma carried all of our junk. We really like feeling useful.
• Paloma said that I should get to hold him since it was my birthday (she said, "I got to hold him on my birthday so you should get to on yours."). So I did. Skin to skin. After she was done pumping Paloma came and read to us. It was all very uneventful. But nice.
• After dinner I read more of Dragon's Bait to Paloma. At one point Karen interrupted because she wanted to make sure that nothing was wrong. She said that my monologue sounded very intense and I guess she wanted to make sure that we weren't having a quiet fight. Not that Paloma and I ever fight. And even if we did (which we don't!) she always wins.
• Paloma is taking me out for dinner tomorrow evening. We will take a break from visiting the NICU. Our second day off in the last two months. I feel like a bad parent for looking forward to it, despite all reassurances to the contrary.
• Lyle is nine weeks old today.

• Melissa, Lyle's nurse this morning, said that he is resting comfortably. He did have some breathing difficulty last night so they are going to give him a break and leave him on the CPAP all day today. If all goes well they will start sprinting him again tomorrow. The results from the GI tract study came back and there are no strictures. This is excellent news. It means that his surgery will likely be a short one. The plan is for it to happen sometime next week. No-one seems willing to commit to a date yet.
• It turns out that Paloma has been planning surprises behind my back. The magic of email allowed her to organise a surprise dinner party. I was more clueless than usual. The only hint was when we got there, Café Cruz that is, the waitress said, "if you come this way I'll take you to the rest of your group." Huh? The rest of what group? Well, it was Dave & Greg, Denise & Robert, Gail and another different other Robert. Paloma had even brought in a cake (from The Buttery, where we got our wedding cake last year). All in all a wonderful surprise and a lovely end to the week.
• And we have a 10:30 reservation for a hot tub at Well Within tonight. Yay!

• When I called the NICU this morning Gayle told me that the surgeons are reluctant to commit to a date for Lyle's surgery. Apparently their schedule is pretty full for Monday. This is disappointing but not unexpected. They waffled on the date when he had his broviac catheter installed. We still hope that he will have the surgery next week.
• Paloma has been pumping milk for over nine weeks now and Lyle hasn't had much of it fed to him. We have a 5 cubic foot freezer which is filling up rapidly (which is another reason why we're anxious for Lyle's surgery to happen… he's got to start eating soon or we won't have any place to store it all). So, for the sake or argument, let's assume that Paloma has been pumping for 64 days and that she gets, on average, 32 fluid ounces per day. There are 128 fluid ounces per (American) gallon and so we currently have 16 gallons of milk waiting for Lyle to start feeding. That's just over 13 Imperial gallons or 60.5 litres. Impressive, eh?
• One of the surgical residents came to talk with us about Lyle's surgery while Paloma was holding Lyle. He said that Lyle is on the surgical schedule for Monday but he didn't know what time the surgery was tentatively scheduled for. He was kind of kicking himself about it since that's the question that everyone asks him. He did make the standard disclaimer, though, that even if he was scheduled for a particular time the surgery wouldn't necessarily happen at that time. It depends on whether an emergency arrives or a previous operation goes over its allotted time. The resident wanted us to sign a consent form for the surgery. He explained what they expected to do to our little boy. They will examine his intestines to ensure that there are no unexpected problems (none are really expected since the upper and lower GI studies both went well). Then they will take down his ileostomy (this means that they will open his abdomen and move the section of intestine poking through it back inside him). Finally they will perform the reanastomosis by connecting the small intestine to the large intestine. They may have to do a further resectioning of his bowel to find a good place to perform the connection. It's a fairly long procedure. If all goes well it could take as little as an hour. If there are other problems discovered then it could take four hours. The resident guessed that Lyle's surgery would last between one and two hours.
• I have very mixed feelings about the surgery. On the one hand I'm glad that he's finally getting the operation since it is a major step on the way to getting him home again. On the other hand it's yet another invasion meaning yet more pain for the poor little guy. He will have to be reintubated and weaning him off the ventilator again will take some time.
• I finished reading Dragon's Bait to Paloma. I'll have to find something new for tomorrow.
• We left the NICU early (in the pouring rain) to attend a Halloween party at Dave & Greg's house. They traditionally have a Scary Movie Night sometime around this time of year. They were showing The Woman In Black. Very creepy. I felt the hair on the back of my neck stand on end during the scene where the solicitor is looking out over the marsh at the graveyard and turns around to see the woman of the title standing behind him. Just writing about it sends a shiver though me again. I told Dave afterward that this was the most socialising that Paloma and I had done since Lyle was born.

• The extra hour of sleep available did us some good. We got going early and made it to the NICU around 1:30 (okay, that's early for us). We mostly just sat by Lyle's isolette talking and reading to him and each other. I chose to read Volume 1 of the His Dark Materials trilogy. It's called The Golden Compass (by Philip Pullman - it's a very dark fantasy, I wish I could say that if you liked Harry Potter you'd probably like this but, in truth, it's more of a book for young adults than for young teens).
• At the 3:00 shift change Paloma and I decided to walk to Palo Alto. We spend so much of our time sitting that a little walking sounded like a good thing. It was a long walk, along Quarry Road to Palm Drive, over the top of El Camino Real and then down University Avenue. We finally got there and spent some time wandering about the shops. It feels very strange to be doing something so normal when we're caught up in a completely abnormal experience. We walked for two hours. Tiring but worth it.
• On returning to the NICU Paloma went off to pump while I went back to Lyle's room hoping to hold him for a bit. I sat by his isolette for half an hour waiting for his nurse to return. I figured she had gone for lunch and I didn't want to disturb any of the other nurses to help me. When Paloma got back she took charge and asked one of the nurses there who was looking after Lyle. It turned out that she was. I hadn't realised that the nurse from before was ending her shift. Duh! Joan, his new nurse, was very willing to help. She hadn't realised that I hadn't realised that she was his nurse.
• As we were getting ready Dr Rhine appeared. He had been called in for some emergency and decided to stop by and say hello. You may recall how early on we found it hard to talk to him since he had given us so much bad news that we always flinched when he came to talk to us. I am happy to say that we no longer have that feeling. He's a lot of fun to talk to. The day always feels a little brighter when he's there. His energy is so positive. Dr Hintz joked with him about how running the NICU was actually a popularity contest and that it wasn't fair that he was there campaigning while she was in charge.
• Paloma asked Dr Rhine about Lyle's surgery and told him that we were still in the dark about the actual start time. He bustled off and returned to tell us that Lyle was on the surgical schedule for 1:00 on Monday. Dr Hintz then drew up a big sign to have the anesthesiologist call us at home to give our consent (yet again).
• I should mention, yet again, that everyone talks very fondly about Jennifer playing the harp and that they really want her to come back often. Joan said that she mentioned it to her family. She said she was amazed at how calm the NICU became when Jennifer played. I emphasize how busy Jennifer is but...
• And that was all the excitement for the day. Paloma read more of Where the Red Fern Grows to me. I sat and held Lyle who slept the whole afternoon away. We left at the 7:00 shift change and spent the evening watching our taped episodes of Buffy the Vampire Slayer and Angel. It sure is nice that the whole "little sister" story line has finally been explained.

• As of 9:00 this morning Lyle had been readied for surgery and was still on the schedule for 1:00. He had been removed from his isolette and placed back in a warming bed. He is 2303 grams. That's 5 lb. 1 oz. He's a real bruiser now.
• Paloma drove me to work through the rain.
• The anesthesiologist called Paloma around 10:30 as they were moving Lyle to the surgical theatre. It seems that the operation before Lyle's was postponed and so Lyle got moved up. Dr Moss began the procedure around 11:00. As of 12:30 Lyle's place in the NICU was still empty so the surgery continues. It's about 1:00 as I write this and we still haven't heard any further news. I will add more as time permits.
• Lyle was moved back into his place in the NICU around 2:30. We arrived there at about 4:00 only to find that the room was closed. The surgical team were in there performing an emergency operation on one of the babies. When an operation is underway they kick out all the parents and put all the remaining staff in caps and gowns. They try to make the environment as much like their operating theatre as possible. That's what happened when Lyle needed his first surgery.
• We found a room for Paloma to pump in while we were waiting for them to be done. By 4:30 they still weren't through so we went and camped out in one of the alcoves off the main hall of the second floor. As I was reading to Paloma, Dr Moss and his team walked by. He did a double take and then came to talk to us. He said that the operation had gone well. Apparently Lyle had a lot of adhesions which hadn't shown up on the x-rays. These are areas where one loop of the intestine was stuck to another loop. They all had to be pried apart before he could be closed up. He said that he'd only had to remove a few inches of bowel in order to make a good reconnection. He felt that Lyle had enough intestine left to tolerate full feeds. The only possible problem would be if the inside of the intestine had died but it had not gone all the way through to cause a stricture (a constricted area which could prevent waste matter from passing). Lyle will be watched very carefully to ensure that he tolerates his food. Dr Moss being very conservative estimated that it would take Lyle seven to 10 days to recover enough from the surgery to tolerate feeding. We hope that he is better sooner rather than later.
• Lyle was pretty obviously in pain this evening. He had three shots of morphine in the time we were there. He also had some problems with his ventilator tube. Apparently he's so big now that the tube they used was too small. Air was leaking out around it. This caused him some problems while we were there. If too much air leaked out then he couldn't blow off the carbon dioxide that was accumulating in his blood. This is not a good thing. Fortunately, Cathy, one of the respiratory technicians checked on Lyle while she was on her way out the door at the end of her shift and she stayed with him until a solution could be found. He will either get a bigger tube or a different ventilator machine. Possibly both.
• All in all we are very glad that he's had his operation. He just needs a break. No more intestinal problems.

• Lyle is not feeling very well at all. He's getting morphine every two hours around the clock to keep him comfortable. He did get the larger ventilator tube and they switched him over to a BabyLog ventilator. It's a wonderful device. It has lots of different settings that allow the respiratory technicians to find just the right way to help Lyle breathe. In particular, they can set a specific volume of air that they want him to get and the ventilator will do what's necessary to ensure that he gets it. Even if there is leakage around his endotracheal tube. This ventilator is even smart enough to know when Lyle is breathing out and not try to blow air into his lungs at that time. It's pretty amazing technology and has only been
  available at LPCH for the last six months or so.
• Unfortunately, this ventilator is right at the limits of what it can do for Lyle. If his breathing becomes more belabored or the level of carbon dioxide in his blood increases they may have to put him on The Oscillator. This is a very ominous gadget which blows small puffs of air into his lungs a hundred or more times per minute (the BabyLog is set to give him about 45 breaths per minute whether he wants them or not). Apparently The Oscillator can be gentler on diseased lungs (like Lyle's) than an ordinary ventilator. When it's running it gives off a deep throbbing noise not unlike a muted jackhammer. There's a baby in Lyle's room that has been on one for the better part of a week now. We would really rather not see Lyle on it since they seem to be reserved for the really sick babies.
• He still has a lot of fluid collecting in his body. Since his lungs were already compromised a lot of the excess fluid ends up there which impedes his breathing (hence the need for the fancy ventilator). You can see from his latest photos (in the album Lyle Bartley Vachon, part 10, be warned, I have posted pictures of Lyle's newest incision) that his body is very puffy. He is now getting Lasix (the diuretic) four times a day. Hopefully this will help him piss out all the extra fluid. Unfortunately, the amount of morphine he's getting could interfere with his ability to pee. If his urine output drops too much they will insert a urinary catheter (I squirm just thinking about it). He is also getting albumin. This is a protein which encourages fluid to leave his body tissue and enter his blood stream from where it can be eliminated. When I heard this my first thought was, "hey, isn't that just egg white?" Yes, that's exactly what it is (although purified for injection into a human body).
• Lyle pretty much gets a nurse to himself now. While he's recovering from the operation his condition is much more delicate. The pediatricians would like to do more for him but Dr Moss, his surgeon, is still pleased with Lyle's progress. He's the one in charge just now. Despite my previously mentioned reservations I have a lot of faith in him. From all reports he is a top-notch surgeon and despite his busy schedule he has always had time to talk frankly with us. One of the NICU nurses told us that his assessments are never overly optimistic. If there's a problem he will say so and he has not said so in Lyle's situation.
• Paloma made lemon bars for the nurses. Carol took them into the break room since, technically, food is not allowed in the NICU. On the way out he door she was mobbed by nurses and doctors and respiratory techs looking for a sugar fix.
• We mostly just sat by Lyle's hot bed and watched him and talked to him. He gets a lot of visitors. He has been there so long that everyone knows him and they all want to hear how he's doing. The amount of caring concern in the NICU is just wonderful. We can't thank the staff there enough.
• It seems there is much less that we can do for Lyle just now. Paloma and I changed his diaper at one point but I felt uncomfortable doing so. Almost every time we moved him he winced and cried no matter how gentle we were.