• Terri is looking after Lyle again today. She's a lot of fun. Very positive and upbeat. Lyle likes her too. When we arrived at the NICU she told us that the doctors are thinking of transferring Lyle to Dominican and that the transfer could happen as early as Monday! We were excited and somewhat perplexed given what Lori Lowthert had told us last night. As Paloma and I were discussing this Dr Lowthert herself appeared. She confirmed Terri's news and explained that Lyle was doing so well that there was no reason to keep him in the NICU for much longer. The surgeons wanted him there for another day or two to make sure he continues to do well on his feeds and then to remove his broviac but that took no time at all. Since it was installed by the surgical team they would be the ones to remove it. They knew exactly how long it was when they put it in so they would make sure that all of it was removed when they took it out. Lyle wouldn't even need to go to surgery. They would come to him. Dr Lori went on to explain that Dr Gaynon was not going to okay Lyle's release to home. His eyes still need time to mature and he felt that Lyle should be in hospital until they had done so. The key is to maintain Lyle's oxygen saturation in the right range and he felt that could best be done in hospital. If they sent Lyle home with us on oxygen there was the possibility that the oxygen tank could run out. Also, the oxygen monitors that are designed for home use are less reliable than the hospital ones. It will take Lyle's eyes eight to 12 weeks to mature.
• After getting our hopes up last night this revelation was like a kick in the stomach. It feels like our love for and ability to look after Lyle has been judged and found lacking. Dr Lowthert, bless her, is on our side and will continue to press for Lyle to be released into our care but if the neonatologist disagrees then there's not much we can do about it. And, of course, if Lyle does have to stay in hospital for another couple of months we'd sooner that happen at Dominican that at Stanford.
• Obviously I feel that Dr Gaynon's concerns are specious. We have watched the nurses caring for Lyle over the past month or so since he developed ROP and ever since he has been on the nasal cannula it has been simplicity itself. They set the flow of oxygen to 0.2 litres per minute and it has stayed there pretty much from the beginning. Even when his oxygen saturation dips they don't adjust the flow but let him return to normal at his own speed. To prevent the case of the home oxygen tank running out they could give us two tanks. When one goes dry we could switch him immediately to the other. If the home oxygen monitors aren't good enough send us home with a hospital quality one. About the only thing I can think of that the nurses in the hospital can do that we can't is re-tape his cannula if he pulls it off in the middle of the night. If that happened while we were sleeping then it could be a couple hours before we noticed. But still, if he's on three hour feeds the time to discovery of this situation wouldn't be that long. It would even be shorter if the saturation monitor detected a dip in his levels.
• I feel very bitter about this development. On the face of it, Lyle will be kept in hospital for another two months so that once a week he can have a five minute eye exam. When we heard that he might be coming home to us we let our hopes rise and to have this reversal occur so soon makes it even harder to take. We'd really thought that Lyle could be home for Christmas. At any rate, Lyle could be transferred to Dominican by the middle of next week and at that point Dr Ismail will be in charge of his care. Apparently there is a very good eye doctor at Dominican (Dr Gonzales?) who will follow up with Lyle's eyes. Dr Ismail may be more liberal and let Lyle come home sooner rather than later.
• The other bad news we had today was that Lyle failed his first hearing test. He will be tested again in a month to see if his response is any better. The test in question, the ALGO Newborn Hearing Screener, is pretty crude (according to one of the nurses) but babies do pass it all the time. Unfortunately for Lyle, he has had several courses of gentomycin and the -mycin antibiotics are ototoxic (having a toxic effect on the structures of the ear, especially on its nerve supply). A more sensitive test will be given prior to discharge and at that time it will be determined whether he needs an appliance or some other special care. I hate thinking of his senses as being at risk. Sight and hearing are so important to me that I can't imagine what life without them would be like for him.
• Lyle continues to improve at nursing. Today he latched on with hardly any encouragement at all. Paloma said that he opened his mouth as soon as he saw her breast. We weighed him before and after again. This time the scale didn't seem to work very well. Each time we pressed the reweigh button we got a different weight. When we put him on the scale afterward the numbers were all over the map. Eventually we decided that he'd taken in about 60 cc's of milk. More than enough to keep him healthy.
• Our son continues to delight us. He is almost always happy and content. He smiles at us, sucks on his hand and sometimes, to his astonishment, on his thumb too. He makes an especial effort to be alert when we're there and spends much of the time looking around him with eyes bugging out of his head. Paloma's nickname for him is "Bug".

Morning…

• Paloma called the NICU this morning and talked with Kirsten. Lyle is doing really well. The did the reducing substances test on his stool last night and the result was very good. He is digesting all the fat he needs. The surgeons were at Lyle's bedside as Paloma called and she heard them tell Kirsten to move Lyle to 50 cc's of milk every three hours. The other good news is that since he is now at "full feeds" he no longer needs his broviac catheter and so someone from the surgical team will be by today to remove it. He's had that line for a long time now and it has been a lifesaver but I'm not sorry to see it discontinued.

Evening…

• We actually made it to the NICU for Lyle's two o'clock feeding. Fritzi stopped by to offer moral support. She was really pleased to hear how well Lyle was doing. She suggested giving up on the weighing before and after when she heard how much trouble we'd had with the scale yesterday. She thought that Paloma could just watch the next time she pumped so as to get an idea of how much milk she produced in a minute or two. Then if Lyle nursed for a couple minutes Paloma could assume that Lyle had taken in about the same amount. This seemed to work fine. Paloma gave Lyle both breasts and he drank from each of them. Then he spit up.
• My friend and former colleague, Julie, and her husband, Barry, stopped by to visit. Julie had found a pattern for booties on the Internet posted by an English NICU nurse and had crocheted a couple sets for Lyle. They are totally cute. Unfortunately, Lyle still has the oxygen saturation monitor on one foot and so that booty got a bit stretched when we tried it on him. It was really great to see Julie and meet Barry. Visitors always make the day go faster. My apologies to Julie. I really meant to get your picture with Lyle but completely spaced in the excitement of seeing you. Next time, okay?
• Karen was somewhat surprised to hear that Dr Gaynon was set on having Lyle stay in hospital another couple of months. She said that he is a wonderful eye doctor who has saved the sight of many, many preemies and so his opinion has to be taken seriously but she felt that his concerns about Lyle's care could be easily handled by Paloma and me. She said much the same things that we did: take home two oxygen bottles, use two oxygen monitors, and so on. She talked with Dr Ariagno (one of the other neonatologists currently in charge of the NICU) who thought that a caregiver conference was in order. Someday next week, probably on Tuesday, we will have a chance to sit down with a selection of Lyle's doctors and discuss the next phase of his life. Paloma and I obviously want the best for Lyle and if that means he has to stay at Dominican for a couple months then so be it. However, we are more than willing to be trained in whatever aspects of care he needs and if we can satisfy the doctors that we are competent and capable and caring… Well, we'd do almost anything to get Lyle home sooner. It's nice to know that the doctors and nurses who see us every day truly believe that we could handle Lyle on our own. We really appreciate their support.
• The transfer to Dominican seems to be a go. That will probably happen on Wednesday if all goes well. We have signed the consent papers and arrangements are being made. We'd really like to be at Stanford when they prepare him for the journey. We could say goodbye to whichever nurses are there and then follow the ambulance to Dominican, to be there when he arrives. It would be great if the transport nurse was someone we knew.

• Well, it is not set in stone that Lyle will have to spend two more months in hospital. Almost everyone we talk to says that he should be sent home. Dr Chris Colby came by to talk with us this afternoon and he said that he's heard both sides to the debate. On the one hand it would be nice for the entire family if Lyle was at home. On the other the concern is that watching his oxygen saturation 24 hours a day might be asking too much of his parents (that's us!). We're told that the home oxygen monitors are notoriously finicky. They go off all the time and have been known to drive parents insane (okay... I'm indulging in a little bit of hyperbole but you get the idea). I told Dr Chris that we'd rather not have Lyle in hospital any longer than necessary but if it was necessary then we could live with the decision. We want what's best for Lyle. So do the doctors. He said that we have been very patient and good parents to work with. Sometimes when a baby has an extended hospital stay tempers can fray. That hasn't happened with us and the medical team all appreciated our forbearance very much. The feedback was nice. I really only have the highest praise for the NICU staff. They have made an awful experience bearable if not enjoyable. The staff there have touched our lives and our hearts and we will not forget them any time soon.
• Anyhow, as far as I can tell at the moment, there are three possibilities that are being discussed: 1) release to home, 2) transfer to Dominican for a couple weeks, and 3) transfer to Dominican for a couple months.
• The first is the scariest and also the most desirable. When we mentioned the fear factor to Karen she was quick to reassure us. Lyle is not going to get worse when he's shipped home. He will be the same baby with the same needs which are more than capable of meeting. Instead of sitting with him in a rocking chair in the NICU we could sit with him on our sofa at home while listening to music or watching TV. A much more congenial environment. Still, as I pointed out to Karen, we're used to having Lyle on our terms: we get there when it's convenient for us, leave in the evening when we're tired, do as much of his care as we want to (although Paloma will no longer let me get away with leaving a poopy diaper for his nurse to clean up). That will all change when he's at home. If this is the option chosen it could happen as early as this Friday.
• The second option would allow Lyle more time to get used to feeding by bottle or breast and help reduce his reliance on the NG tube for gavage feeding. Of course, if we have to we will learn how to manage the NG tube ourselves but it is an extra complication over and above the normal baby issues. A transfer could happen as early as this Wednesday.
• The third possibility leaves me feeling sick at heart. Come on, we've been driving up to Stanford almost every day for the last three months (we've probably put a grand total of 9000 miles onto our cars in that time... uh, just to be clear, that would be 4500 miles on each car). Can they really make us endure another two months of this kind of existence? Of course, having Lyle at Dominican would be an enormous change for the better. It's just a five or ten minute drive from our house. We would have some semblance of a life back again. Yes, we could survive it. Let's hope we don't have to.
• Lyle himself just sails through all these minor crises. He is looking better all the time. The yellow is slowly starting to fade from his eyes and his skin, although still kind of orange, is looking pinker and pinker. He makes all kinds of effort to interact with us when we're there. It is so much fun to watch his expressions. He now does a great job breast feeding and even seems able to deal with one of Paloma's milk letdowns. The hard part of breastfeeding him is balancing the surgeon's desire to have him only take in so many cc's per nursing session and the inherently immeasurable nature of breastfeeding. Karen reassured us that the surgeons were aware of this and were just happy that he was catching on to the nursing thing. When he's home, she said, he will be fed ad lib (a wonderful way to describe it, very graceful and musical). Paloma will let him decide when and how much. No more of this rigid X cc's every 3 hours stuff. We really enjoyed the process of waking him up for his 5 o'clock feeding. He was so sleepy. Paloma sat him in her lap. He would open his eyes and look at her and then sag back into sleep. When he did wake he did a really good job of sucking and swallowing. What a guy!
• Lynda had us give Lyle a bath before his 8 o'clock feeding. Let me tell you, it was nerve wracking bathing him under her watchful (perfectionist) eye. Paloma let me do the honours. I tucked him into my right arm in a football hold ("but I know nothing about the sport," I complained, to no avail) and washed his hair. He was compliant and complacent. And he smelled so good afterward. Then I plunked him down in the bath water. He made a little scream of surprise that had us all laughing. After his initial shock he loved it. So much so that he peed into the bath water. Then we dried him off. The expressions on his face were priceless. You can see some of them in the album called Lyle Bartley Vachon, part 13. Paloma and I agreed that he is a most delightful baby. Whenever we make this observation to the NICU staff they are quick to agree (they probably just don't want to hurt our feelings).
• After his bath he was very willing to nurse and did so sporadically for fifteen or twenty minutes. Lynda then gave him a little bit extra milk just to be sure that he was getting enough. Warm and clean and with a belly full of his mother's love he dozed off almost immediately.

• Lyle is coming home!!
• Possibly as early as this weekend!
• Irina was bursting with excitement to tell us when we got there this afternoon. Dr Bill Benitz (who just came on service again) had talked with Dr Michael Gaynon and got his okay for the release. What a reversal from the news at the end of last week.
• As Paloma was breastfeeding Lyle, Dr Bill himself came by to bring us up to date. There are all sorts of conditions that we are more than willing to agree to. Lyle will have to stay on oxygen for the next two or three months. He will need to have an apnea monitor (but probably not an oxygen saturation monitor). The lights will have to stay on all the time. Even at night. Once a week we will have to bring Lyle to Dr Gaynon's office in Palo Alto for an eye exam (yes, there is an eye doctor here in Santa Cruz who could follow up but Dr Gaynon knows Lyle's eyes and their history). Also, we will have to learn how to gavage feed Lyle which, at this point, means learning how to insert the gavage tube. Once the tube is in place putting milk down it is simplicity itself. These are all conditions we are happy to meet. We finally get to be an almost normal family.
• You may be wondering why Lyle will need gavage feeding when he has been doing so well with breast- and bottle-feeding. There is a possibility that he could tire himself out from nursing which in turn could cause him to de-saturate. This would be bad for his eyes. If we use the gavage feeds to top him up then he can put all his energy into growing.
• Dr Benitz told us that the apnea monitor is only a formality. Whenever a baby is sent home on oxygen he has to have an apnea monitor since most babies on oxygen need it due to some pernicious lung disease. Lyle only needs the oxygen so his eyes will mature properly. He hasn't had an episode of apnea in months (end even then it wasn't his fault, motion in his endotracheal tube while he was being suctioned caused a vagal reflex). Apparently these monitors have a highly obnoxious alarm designed to wake you out of a deep sleep (presumably by stopping your heart and, probably, restarting your baby's at the same time). Also they are notoriously bad at picking up the baby's heart rate and so tend to sound false alarms quite frequently. I imagine the designers felt it was better to err on the side of alarming too often rather than missing the real problem. Oh well, I'm sure we will survive this indignity. Although Lyle could be on oxygen for as much as three months we should only need the monitor for the first six weeks or so.
• Sometime tomorrow Sue, one of the LPCH staffers who handles discharge, will begin the process of getting us ready. She will order a large oxygen tank for our home, a portable oxygen tank for when we take Lyle out and about and an apnea monitor. She will then arrange for us to be trained in their use. She will also arrange for our insurance company to pick up the tab. It should be an easy sell. I'm sure they would rather Lyle be home in our care than in hospital costing them 3 or 4 thousand dollars a day.
• Poor Paloma. Dr Benitz's visit coincided with her attempt to wake Lyle enough to breastfeed him. She really is a very modest person. I can't even imagine what it must be like for her to expose herself to all and sundry at the precise moments when she would like to just be left alone.
• Irina talked to us about inserting an NG tube. She said the key is to do it quickly else you can stimulate a gag reflex. You figure out how long the tube should be by measuring from Lyle's ear to his nose to his sternum. Once it inserted you tape it in place and then use a syringe to put a little bit of air into his stomach while listening with a stethoscope. If the tube is in his stomach you will hear a little gurgling sound. The tube will almost never go into the lungs but it's best to be sure. Milk in the lungs would be disastrous.
• We had dinner on the roof again tonight. Paloma made an Acorn Squash Soup which was absolutely wonderful. Seasoned with curry. The warmth of the soup and the spices was a perfect complement to the clear cold night.
• When we got back to Lyle's bedside Lynda was bustling around getting us setup for an introduction to Infant CPR. She said that people almost never need the skill but better to be ready than not. She put us in a conference room with a video tape. It was interesting and sobering. We both took a First Aid and Adult CPR course last summer. We even have little cards saying that we are trained in both areas. My advice to you is that if you should ever have an accident where you need help or resuscitation try to do so somewhere far away from either of us. I have a very clear memory of sitting in the class. Now, how many times per minute am I supposed to breathe for you? And where do I put my hands when doing the cardiac massage? It's the kind of information which I flush the quickest (i.e. stuff that I don't use everyday). One important tidbit of information I gleaned from the tape was to write everything important (your name, phone number, address with clear and simple directions to get there) on a card which you keep by every phone in the house. In the panic of an emergency you could be forgiven for forgetting even your name. Having the card there means you don't have to think too hard when calling 911 (or whatever emergency number is appropriate in your part of the world).
• After we'd watched the video Rebecca (a nurse who trains parents in Infant CPR) found a dummy we could practice on. That helped a lot. We'll try and get another hands on session with the dummy tonight. Interestingly, Rebecca had a technique slightly different from that demonstrated in the video. She said that the procedure is revised every so often and so refresher courses are very useful.
• On the way home Paloma and I took turns listing all the ways our lives would be better when Lyle comes home. No more daily commute came high on both our lists. Being able to stay home on the weekends. Having time to watch our favourite TV shows when they're broadcast rather than relying on a cranky VCR. Being able to entertain visitors. It's easy to think of things to add.
• We finished off the day with a celebratory soak in a hot tub at Well Within.

• Today was rather low key after all of the excitement yesterday.
• Paloma had a call from Sue at LPCH saying that the home nursing care was already organised. This was a surprise for us. No-one had mentioned it before but apparently we will have a nurse checking on Lyle once a week (or as needed) for some unspecified length of time. It's kind of comforting to know that we won't be entirely on our own. Lyle is doing well but I'm sure we'll have questions from time to time.
• Lyle's nurse today, I think her name was Joan but she spoke so fast on the phone that I didn't quite catch it, said that Lyle is on-call for an MRI. This is standard procedure for a baby that has had a brain bleed. No time has been set for the study but it will take about an hour when it happens.
• Paloma breast fed Lyle again today. He started out fine on her right side and then got all fussy. We spent a while trying to mollify him before thinking to try him on her left side. D'oh. He settled immediately and started nursing again. So we know that he does try to communicate with us. We're just not quite up to speed on understanding his messages. After he'd finished, Karen (not Karen his primary but a different nurse with the same name) wondered if he'd got enough so we tried him on a bottle. He took in another 5 cc's. Enough that we felt pretty confident that he was actually full from the breastfeeding.
• When we returned from dinner Paul told us that MRI had called and wanted Lyle prepped and ready to go at 8:30. He'd fed Lyle and given him a dose of chloral hydrate to knock him out (any movement at all will blur the MRI picture). Lyle wasn't quite out. He would make occasional sucking motions on his pacifiers. After some discussion Paloma and I decided to accompany Lyle to the MRI. We helped Paul push Lyle's crib over to the main hospital. Somehow, the trip caused him to wake up. When we got there Paul gave him another dose of chloral. It didn't help. I felt that the MRI tech was fuming under her breath. Lyle was not the last study to be done that night. She was, however, very restrained about it. I found it quite amusing. There was Lyle fussing and three adults hovering over him trying to calm him down. Yeah, right. As Paul said later, this is the time of night when Lyle tends to be most active since that's when we're there to visit him. He's used to having someone to play with. The chloral didn't even make a dent in his displeasure at being taken from us. Finally Stacie, one of the Neonatal Nurse Practitioners came and gave Lyle a shot of Ativan. He fought it briefly and then gave in. The MRI tech was pleased that she could get nice clear images of his head but I did hear her talking on the phone and rescheduling some of the later patients.
• After getting Lyle back to the NICU Paloma and I left Paul for what will probably be Lyle's last night under his care. Paul has been a great and comforting presence over the last three months. We haven't seen him much since he almost always works the graveyard shift. When we do get to see him we've really appreciated his compassionate, caring nature. Today he gave Lyle a little bookmark embroidered in the Hardangar style by his grandmother. It's beautiful.

• The results of Lyle's MRI study were not so good.
• All four of his ventricles are enlarged. Excess fluid seems to be gathering in his brain. We don't know what the implications are. He was examined by some residents from the neurosurgery team. They looked at his head and at the chart of his head's growth over the last three months. They felt that it was pretty much normal. It's not clear why his ventricles should be so much enlarged. The attending neurosurgeon has been called to look at Lyle's MRI and render a judgement. Unfortunately he is currently on holiday. We were told that he is to return tomorrow and that he will check up on Lyle sometime before Friday.
• If the fluid is putting pressure on his brain then they may need to install a shunt. This is a tube that goes through his skull into the ventricles and then runs under the skin and drains into his abdomen. The cerebrospinal fluid then has a way out. Dr Benitz said that this was likely a condition that Lyle would outgrow. As he gets bigger the normal pathways for the fluid will probably reopen. We'll know more once the attending has looked him over.
• This discovery makes it unlikely the Lyle will be coming home with us this weekend.
• On the bright side, although it sounds horrendous to install a shunt the operation actually is quite quick. It lasts about an hour. Recovery takes a couple days. If the shunt allows his brain to develop normally then so be it. If the operation happens now then Lyle will be back in the NICU where we know everyone already. If this discovery had been made a couple months out requiring him to be readmitted then it might've been to the Pediatric Intensive Care Unit (PICU). That Lyle looks so normal is a good sign. If there is fluid buildup in his skull then it hasn't been going on long. It's not (yet) an emergency.
• I feel cheated. I want to be angry at someone but who? There's no one I can point a finger at and say, "How could you let this happen?" It's cruel of fate (or god or whatever) to let us believe that we were almost done and to then throw this roadblock in our faces.
• Tuesday night Paloma and I signed consent forms to allow Lyle to be vaccinated. Paul did them that night. We were told that Lyle reacted "appropriately". This means that he got a bit of a fever and was very cranky today. He was reluctant to take food from a bottle and wasn't particularly interested in breastfeeding when we arrived. Of course, it didn't help that Dr Benitz arrived while Paloma was trying to put Lyle to breast. He very gravely told us all the news. Paloma said later that she hadn't been able to give Lyle the attention he deserved while Dr Bill was dispensing the bad news.
• She tried breastfeeding Lyle again after we got back from dinner but he was still peeved. He needed a new NG tube and Paloma put it in. She said it was pretty easy. She could hear the air in his belly which told her that it was correctly placed.
• Apparently Lyle had a couple episodes of bradycardia and de-saturation this afternoon. Gayle thought that they were probably a reaction to the vaccines but they could also be a sign of increasing pressure on his brain. As she says, Lyle never de-sats. The most likely explanation comes when you ask what changed in the last 24 hours. The MRI study was non-intrusive and couldn't cause such behaviour. The vaccines were and could.
• In the meantime, work is still proceeding on getting setup for Lyle to come home. I know it seems a bit strange to continue with the preparations while so much is still up in the air but if it's all in place then he can come home right away once he's cleared by the neurosurgeon. Tomorrow afternoon we will be trained in the use of the home apnea monitor. I continue to hear bad things about these devices. Many false alarms being the main problem.

• Well, still no news. Shannon, our social worker, called Paloma today to find out how Lyle's discharge was coming along. She was surprised to hear this latest development. She went off and asked around. Apparently the attending neurosurgeon was on holiday but returned today. The plan is for him to examine Lyle soon and make a recommendation.
• In the meantime we were trained on the use of the oxygen bottle and the apnea monitor by a respiratory technician from Apria, a medical supply company. It was all very straightforward. She explained how the monitor worked and then had us hook Lyle up. The sensor placement is very tricky. We had alarms sounding with distressing regularity because the sensor couldn't register Lyle's heartbeat or his respirations. We finally squirted a bit of saline on the pads. That helped. The tech wanted us to leave Lyle on this monitor while he was in the NICU, so we could get used to using it, but we took him off it as soon as she left. He doesn't suffer from apnea or bradycardia anyhow (except in certain rare cases). We kept him off monitor until Paloma had finished breastfeeding him.
• Which went very well. Lyle was very much awake after messing around with the monitor. And he was hungry since we were past his usual feeding time. He settled in to nurse with gusto. He nursed on both sides and only messed around a little bit (sometimes he will latch on and then push Paloma's nipple out of his mouth with his tongue... we tell him that he shouldn't play with his food but he seems unconcerned with our quirks). It was very gratifying for Paloma after yesterday's lackluster performance. He really is back to his usual self now. Kate, his nurse this afternoon, explained that the NICU nurses weren't used to administering vaccines. She said that as a mother she just knew that you start your kids on acetaminophen or ibuprofen six hours before their shots and keep them supplied with it for 24 hours afterwards. Fever and irritability are a major side effect of the vaccines. Might as well make it easier for the kids. There were orders to give Lyle Tylenol as needed. But he probably didn't get enough to keep him comfortable.
• Kate had me give Lyle his medications. She was surprised that we hadn't been trained to do this yet. Particularly since there has been so much talk of sending him home. He got a dose of Actigall (ursodiol) down his NG tube before nursing and a dose of Potassium Chloride (Rum-K) after. I had to push one and a half cc's of air down the tube afterward to make sure all the medicine got into his stomach. Very easy. Of course, when we get him home the doses of medicine won't come pre-measured. We'll have to fill the syringe on our own. But how hard could that be.
• You know, it was really reassuring to see Lyle this evening. Whenever we get some bad news it is very easy to focus on that and feel that our world is falling apart. Lyle just endures through it all. He is no different today than he was yesterday or the day before that. He's a baby. He behaves like a baby. He's happy to see us. He makes funny faces. He fills his diaper. He soothes us by being who he is, so innocent and accepting and happy. If he needs a shunt so that his brain can grow properly then that's what he'll have.
• We left early. After too many late nights it was nice to get home before 8:30. We watched TV (caught up on Buffy and Angel). Then I read the final chapter of The Subtle Knife to Paloma. What a cliffhanger! I'd forgotten. I read it when it came out three years ago. Now we have the final book in the series (The Amber Spyglass) to read. We've heard that it is very sad. Maybe we can get started on it tomorrow evening.
• Lyle is fifteen weeks old today.

• Thanks go to Carol once again for sacrificing even more of her freezer space to give a home for some of Lyle's milk. We think that she now has more bottles of milk than we have the capacity for. Lyle has enough food stockpiled to see him through the next three or four months.
• We had more bad news today. Lyle had his eye examination this morning and Dr Gaynon found that his right eye had gone from Stage 1 ROP back to Stage 3. He wants Lyle to stay in hospital at least another week so that he will be there for next Friday's examination. Everyone is aghast at this news. How can eyes that have improved once already suddenly show such a dramatic change for the worse? The only good thing that can be said is that since Lyle is still in hospital the change cannot be blamed on the care provided by his parents. Scant comfort indeed.
• The drive up to Stanford was a cheerless affair. After feeling so happy just a couple days ago this latest dip in the roller coaster has hit us pretty hard. Karen, one of Lyle's primary care nurses, said that it felt like she was kicked in the stomach when she heard the latest developments. She was all set to give us a call at home this evening and ask how we were handling Lyle by ourselves.
• Karen went off in search of Dr Benitz to have him give us the full story 'cos she was unable to answer some of our questions. Dr Benitz came right away. He is a very caring man, generous with his time. We asked how it was that Lyle's eyes could have gotten worse. Dr Benitz went through Lyle's chart and showed us the last three or four eye exams. He showed us the area in Lyle's right eye which had suddenly developed a knot of veins. In the previous two exams we could see that there were no problems in that eye. Then we saw the one where his eye had been at Stage 3 before. It was the opposite side of the eye that time. So it wasn't that one area had gotten worse, then better, then worse again. As I understand it, the veins in the eyes grow out from the centre to the edge of the retina. Any areas without veins are called "immature". If the veins tangle and snarl that is a sign of ROP. The veins in Lyle's eyes have a way to go before filling his retina. All the areas without veins are at risk. Dr Gaynon has requested that Lyle stay in hospital at least until after his eye exam next Friday and Dr Benitz feels that this is a reasonable request given his track record for saving the eyesight of preemies.
• Then I told Dr Benitz that I was concerned that no-one had mentioned that there were any signs of hydrocephalus in Lyle until after the MRI at which point we had nurses and doctors saying things like, "well, his fontanel is open from the front to the back" and "the growth of his skull did proceed too rapidly". His nurses have been measuring his skull circumference (just above his eyes) every day since his brain bleed and at every step of the way we have been told that the measurement has been entirely normal. The MRI doesn't cause hydrocephalus. Why was there no indications of a problem before now? Dr Benitz was quick to reassure us. Lyle's head growth is entirely within normal parameters. He is allowed 1 cm change per week and if you look at the measurements going back three months that is exactly what he has done. He used a football metaphor to explain what was going on. I didn't entirely understand the allusion but I will try to reproduce it here for my faithful readers. He said that on Monday morning everyone knows that the quarterback should have bunted when it was the third down with two men on base. If I understood him correctly, what he was saying is that hindsight is 20/20. Knowing that the MRI showed a problem everyone is being quick to reinterpret their understanding of events. Anyhow, Dr Huhn, the neurosurgeon, will look at Lyle's MRI and at Lyle himself on Monday and make a recommendation. The talk at rounds this morning was that if Lyle needed a shunt then it could be installed as early as next Wednesday. The procedure takes about a hour. Lyle would be reintubated for it but they would extubate him as quickly as possible afterward. His feeds would be interrupted for about a day. They would want to keep Lyle in hospital for two or three days after that for observation.
• Dr Benitz assured us that his goal is to have Lyle sent home with us before he goes off service on Christmas morning. He thinks this is still a very good possibility. I could play doubting Thomas. Lyle has a history of getting yeast infections after operations (because he is routinely put on antibiotics at such times and yeast infections are much more likely when the normal bacterial flora have been eliminated). If that happened it would mean another 21 day course of Amphotericin. But, let's leave all such speculation aside. If we have to wait a bit longer to take Lyle home then we will wait.
• We did start reading The Amber Spyglass tonight but didn't get very far. Since we've been in the NICU for so long we know most of the nurses there and so were continually interrupted by someone wanting to know how Lyle was doing. After making the same explanation for the tenth time the emotional reality of it fades a bit. Chase, the traveller from Alabama, was very reassuring. He said that he sees kids in the clinic back home all the time who have shunts. Often their parents forget to even mention the existence of it since it is so routine and trouble free.
• On arriving home we found blanket for Lyle on our front porch. Our neighbour Andrea had made it for him. It's very sweet. Blue with fishes.

• We had a blessedly quiet day. It was much needed after the disappointments of the week. Paloma and I saw Patti for a massage this morning. Kim and her duaghter Rhiannon, neighbours from down the street, dropped by with some books for Lyle. Kim had a little boy at the end of July so Lyle will have a playmate nearby.
• We headed up to Stanford late in the afternoon. We sat with Lyle. Held him. Paloma nursed him. After dinner we gave him a bath. We stayed late and chatted with Karen. All very ordinary. All very normal. Not every day is full of sound and fury (whew!).

• I'm not sure if this is more bad news. When we got to Lyle's bedside there was a new order from one of his doctors. They want his milk fortified with some kind of formula. Karen explained that they are concerned that Lyle is not gaining weight as fast as they would like him to. The fortified breast milk will give him a few more calories to work with. Also, Karen tells us that Lyle's stool is not as well formed (seedy) as it should be. His shortened intestine may be having problems absorbing nutrition.
• Current problems aside, Lyle is a real sweetheart. He always seems pleased to see us. We found him sleeping in a swing when we arrived today. Karen said that he was very surprised when she put him in it and started it moving. She thinks that he might get a bit bored. No-one had thought to put him in a swing before now because he is such a good baby. He hardly ever fusses and is easily mollified. The swing is usually reserved for the trouble babies. I wish we could have seen him. She said that his eyes were bugging out. The other nurses were laughing at his obvious excitement.
• He is, however, having problems nursing. We spent a lot of time discussing the situation with Karen and one of the other nurses there who had taken a lactation course. Lyle will suck on his pacifier for hours at a time. When put to breast, however, he will only suck for a minute or two before pushing away. In half an hours nursing he will only actually get perhaps five minutes of nutrition. After much discussion it was decided that he probably hasn't quite worked out the suck-swallow coordination. He gets a mouthful of milk and isn't quite sure how to dispose of it before the next mouthful arrives. The general feeling is that he needs to work with an Occupational Therapist to learn how to make this work.
• Paloma has an enormous store of patience. She switches Lyle from side to side. Sits him up for a burping. And then tries it all over again. Not knowing how much milk he actually gets is very frustrating. Maybe he gets enough in that five minutes of nursing. Maybe not. She said that she understood why mothers give up on nursing and revert to bottles of formula. It so much easier to be sure that your baby is getting enough food.
• Karen asked to see some pictures of our house so I spent a wild hour or so this morning taking pictures. You can see them in the album called 124 Kennan Street. The cat you see in some of the outdoor pictures adopted us shortly after we moved in almost two years ago. Her name is MC, short for Mangy Cat. She looks a bit ratty but is actually very sweet. She also rid our lawn of pocket gophers. In the space of a week or two last summer we found four bloody gopher heads on our front porch.
• I don't think I've mentioned this before but Paloma has been very busy in the last three months. She has stayed home while I have been trying to work. Among other things, she has been working on painting the kitchen. She chose the colours. One of the TV shows that we really like is Changing Rooms. The designers on this show often choose very dramatic colour schemes and I think that influenced Paloma's choices.
• The hardest part of being left hanging for so long without a definitive opinion from the neurosurgeon is that behaviour that used to seem normal is now worrisome since it could be interpreted as a sign of hydrocephalus. Is the fluid collecting in his skull making him more lethargic and less interested in nursing? Does he seem less alert today than his did yesterday? Are his eyes opening as wide today as they used to? Does it look like his fontanel is bulging more now? You can drive yourself crazy with such speculation. Dr Benitz said, last Friday, that Lyle didn't behave like a baby with a headache. And if there was significant fluid collecting he would be more irritated, less easy to appease. I know this isn't the case but it feels like the doctors are being cruel. To leave this situation unresolved for so long is maddening. It's been five days since we were told that Lyle's MRI was worrisome.

• Dr Huhn has weighed in with his opinion. Lyle needs a ventricular shunt. The operation is planned for Wednesday. We will meet with him tomorrow afternoon to discuss the procedure and sign a consent form. There are a lot of things to worry about. Lyle will have to go back on the ventilator and it may take him a while to get off it. Especially if he gets as much fluid during this operation as he did in the last one. It collected in his lungs and tissue and took forever to be removed. Lyle got a yeast infection after his last operation and, given his history, it could happen again. These are all issues that need to be addressed. The destination of the shunt may be a problem too. Poor Lyle has had so much done in his belly already that there may not be room for the shunt. Dr Huhn will discuss the situation with Dr Skarsgard (the one who did Lyle's reanastomosis) before he sees us tomorrow. Despite all this, Dr Benitz says there is a very real chance that Lyle could be released to us next weekend. We're not holding out much hope for this but it sure would be nice. The big question mark is the state of his eyes come Friday.
• I think I totally offended Christina, one of the NICU Nurse Practitioners, when I jokingly suggested that when we're not there they all sit around trying to decide what problem Lyle will get next. It was just a joke. Honest.

• Paloma called me in tears around noon today. Dr Huhn had just called her to say that he wouldn't be able to make it to our planned meeting this afternoon. "After all," he said, "this is not an emergency situation. Let's talk tomorrow afternoon instead. How about five o'clock? I should be able to make it then." (I'm not really quoting him here, just relaying the gist of his conversation as though it were a quotation.) After waiting for the better part of a week, after being told that we weren't going to be able to take our baby home soon after all, this additional delay feels like a cruel slap in the face. Perhaps Lyle's condition is not a medical emergency but his parent's emotional state has deteriorated dramatically. The torture of delayed parenting is tearing Paloma apart. It hurts to see his clothes. It hurts to see his toys. It feels like he will never come home. After this next operation is complete something else will go wrong requiring Lyle's hospital stay to be extended yet again. Intellectually we know that Dr Huhn has to take the time necessary to get it right. He has to meet with Dr Moss or Dr Skarsgard to discuss the proper placement of the shunt. Lyle's belly has already been traumatized. It may not be appropriate to drain the shunt there. What are the other options? Think carefully before committing. Emotionally the delay is almost unbearable.
• I left work early (sorry Barry) to comfort my wife. Being home alone is hard. We sat and talked. Eventually we decided to watch a movie. Princess Mononoke was on one of the DishTV Pay-per-View channels. We've been wanting to see it for a while. We missed it when it was in the theatres. It was sad but moving and beautiful. Nice to be involved in someone else's problems for a brief time.
• Since we weren't going to meet Dr Huhn we decided to stay home. Take a breather before diving back in the NICU experience. Lyle is doing fine. He eats and sleeps. One of the nurses told us that he did miss us. He woke up while Megan, his nurse for the evening, was busy with her other baby and started crying. Fortunately, a "cuddler" appeared just then, took Lyle out of his crib and held him for a while. That was all he wanted, a little bit of attention. Caroline thought that he wanted someone to read to him. Lyle's used to having that as part of his daily routine. Of course I can't hear news like this without feeling guilty for "abandoning" him.

• The last week has been very wearing for our already damaged nerves. I took the day off work to be with Paloma.
• Mid-morning we got a phone call from Shannon, our social worker at LPCH. She had heard, through the grapevine, that Lyle's surgery was being postponed again. This time to early next week. She wanted to know if we'd received this news already or not. Not! I felt sick at heart with this latest delay. I told Shannon that we were very angry at being left out of the loop. The lack of information over the last week has made us feel like we were being ignored and that we were losing confidence in the care Lyle was receiving. She was very supportive. She talked with Dr Benitz and then called us back and promised to have someone, probably Dr Huhn's nurse practitioner, talk with us before our scheduled meeting with him this evening.
• We sat by the phone all afternoon. No-one called.
• Please indulge me while I rant (it's my web page and I'll rant if I want to…).
• I like to think that we are being "responsible parents" and are doing whatever we can to maximise Lyle's chances for a normal existence. Much as we would like to, we know that we could never just take Lyle home against medical advice. We could never forgive ourselves if our actions caused further damage to our sweet little boy. I think the hardest part over the last week has been the lack of information. Big decisions about our son's care are being made without the courtesy of consulting with us. From where we sit, the neurosurgeon appears arrogant and unapproachable, delivering his wisdom from on high at his leisure. We have heard similar things from another parent whose daughter also requires a ventricular shunt. I think this is a result of treating the medical problem in isolation, of not considering it in the context of Lyle's family and all that we've gone through in the last three and a half months. Common courtesy goes a long way in ameliorating hard feelings. If the neurosurgeon had answered his pager last Friday and spoken with us then, even if he didn't have the full story at that time, we would've at least known better where we stood. Instead we were left dangling over this new participle. That feels mean-spirited even if unintentional.
• I feel that we were wronged by his cavalier attitude but I could just be picking on him because he's a convenient target. As that other parent told us, "you can forgive his poor bedside manner since he's such an excellent surgeon."
• Look, we know that we are not the only ones with problems. We certainly don't know what other situations manifested last week requiring immediate attention. Crises abound at Lucile Packard Children's Hospital. Sometimes it is hard to maintain that perspective. Misery tends to narrow one's vision. The big picture is always more complex. We know that there are no villains in this particular drama. In the real world motivations are painted in lovely shades of grey. I can totally understand his reluctance to talk to us without first fully understanding Lyle's situation.
• And we'll survive. Lyle will come home some day. Christmas will be Christmas even if we spend it at the NICU.
• When we got to the NICU we had Dr Huhn paged. Shortly thereafter we were informed that he was in the middle of his last procedure for the day and that he would be there to see us within the hour.
• While waiting we gave Lyle a bath under Lilly's expert guidance. Lyle didn't like it very much. He cried the whole time. Then Lilly had me bottle feed Lyle. She had this new bottle for him to try. It's called the Haberman Feeder and is designed to help children with a weak or disorganised suck. Lyle loves his pacifier but often seems surprised when given a bottle. As Lilly pointed out, he has to learn that nursing is pleasurable. The Haberman bottle has three possible flow rates depending on which portion of the nipple faces up. This ensures that Lyle will not be overwhelmed by an enormous volume of milk. It was reasonably successful. He took about 35 cc's from the bottle and then was tube fed the rest.
• Dr Huhn arrived while I was feeding Lyle. He apologised for not talking to us sooner and explained that he'd wanted to discuss the draining of the shunt into Lyle's abdomen with Dr Moss before he made any decisions about the procedure. Dr Moss will actually be assisting him on the shunt operation since he knows the insides of Lyle's belly better than anyone having been in there twice before. Coordinating the schedules of the two surgeons is a difficult task hence the delay until next Tuesday. Dr Moss will do the approach to Lyle's abdomen. If they can do the operation sooner they will let us know well in advance. We should have the final date at some point in the next day or so (Paloma and I both thought, "I'll believe that when I see it," at the same time). He was aware that we were anxious to take Lyle home and said that they would only need to keep Lyle in hospital for two or three days after the operation for observation. We will have a lot of follow up visits after Lyle comes home. The big problem with shunts is that scar tissue at the incision site can block the valve off completely. Other than that Lyle can have the shunt forever. They will, of course, teach us what the signs of shunt failure are. He said that they are hard to miss.
• I asked Dr Huhn how Lyle could have hydrocephalus when all along the measurements of his head growth had been so normal. He said that it was only in the last couple of weeks that the growth was slightly higher than normal. The change was a very subtle one. Easily missed.
• As Dr Huhn pointed out. Lyle needs to stay in hospital until Friday anyhow for his next eye exam. It now sounds as though he will be there for his exam the Friday before Christmas too. We hope that his eyes will not have degraded any further by then.
• Lilly was very comforting after Dr Huhn left. She suggested that we take Lyle out for a stroll and then got us all set up with an oxygen bottle and the stroller. I know that both Paloma and I were thinking the same thing when she suggested this. We looked at each other meaningfully: maybe we won't bring him back... Unfortunately, as mentioned above we are too responsible to jeopardize Lyle's health by doing so but it was a fun thought. It cheered me up no end. As we were heading out the door I told Lilly not to look out the NICU window, just to give us a good head start.
• It was great. We got to have Lyle during the shift change. A time when we usually have to leave him in his bed. We walked around the second floor and found an uninhabited alcove. We sat there for an hour or so. Paloma held Lyle and I read to them. It was a wonderful family time. Usually when we sit in the NICU we are interrupted every five or ten minutes by a nurse or doctor wanting to chat. Our alcove time was undisturbed and peaceful. Healing for both Paloma and me.
• Cristina was Lyle's nurse when we returned. I apologised for leaving her with nothing do. She didn't mind at all.
• It was about eight o'clock when we got back and despite being hungry ourselves (not having brought a dinner with us) I encouraged Paloma to breastfeed Lyle. He was awake and fussy and did really well. He seemed to really get the whole suck, swallow and breathe thing. He nursed for about half an hour and did so well that we didn't even feel the need to tube feed him afterward. Every time it looked like he was done Paloma tried something: burped him, switched him from one side to the other, etc. Each time she put him back to breast he started nursing again. It was great. Very encouraging.
• And on arriving home I got to watch the end of a Junkyard Wars episode. It was great fun.

• Okay, I'm better now. Yesterday I ranted and roared like a true Newfoundlander and today I'm calm again. We can face the prospect of more hospital time for our precious son. A pre-Christmas release is still possible. Likely even.
• The phone call that we waited for all yesterday afternoon actually was made. When I got in to work this morning there was a message waiting for me from Dr Huhn's nurse practitioner explaining everything that we learnt from the good doctor himself last night. In retrospect I suppose I shouldn't have confused the staff at LPCH by giving them too many phone numbers where we could be contacted.
• Lyle is just fine. Lynda got him the cutest little Christmas outfit and he was dressed in it when we arrived. You can see the pictures in the album named Lyle Bartley Vachon part 14. Every nurse who walked by did a double take and then gushed all over the poor boy, "he's so cute!!" Well, yes, he is pretty damn cute, thank-you very much.
• He is also very sleepy. He could barely keep his eyes open when Paloma tried nursing him. It was not very successful. Then I tried him with a bottle. That wasn't very successful either. We gavaged him again. He slept most of the evening. He didn't like it when I took his temperature but even that wasn't enough to really wake him. Paloma thought it was because he was toasty warm when snuggled into his new outfit. I guess we'll just have to be mean and strip him down when we want him to nurse.
• Sadly, we said goodbye to Dr Lori Lowthert tonight. Her tour of duty in the NICU is over. Six weeks already! Hard to believe. We will miss her. She was a tireless champion of our cause. She pressed very hard to have Lyle released into our care. We will always appreciate her support and kindness. Darn it! I just realised that I never got her picture for Lyle's scrapbook.
• I would be remiss if I did not mention that Lyle is sixteen weeks old today.

• Lyle had his eye exam this morning. His left eye is unchanged at Stage 1 ROP. His right eye is slightly improved, although still at Stage 3. Since his eyes have been at Stage 3 and then improved once before we hope that they will do that again.
• Lyle is way more portable now than he used to be. When we arrived Karen had him in the swing again and he was off monitor. She said that we must be sick of being tethered to that one spot in the NICU and suggested that we take him out for a stroll again. We agreed. She got us some oxygen and put Lyle in the stroller and off we went. We stayed out for almost three hours. Just wandering around on the second floor of the hospital. It was very nice. Much, we imagine, like it will be when Lyle comes home. Just the three of us hanging out. We took turns holding him and reading to him. When he got hungry around 6:00 we took him into one of the parent rooms and shut the door while Paloma nursed him. He did quite well. Gratifyingly well in fact. We kept him out until after the shift change.
• When we arrived at NICU we explained to Karen that we still hadn't heard whether Lyle would get his shunt surgery on Tuesday or not. She paged the neurosurgeon so we could get his final answer. Unfortunately, he came to the NICU right after we'd left with Lyle (we hadn't expected him so quickly since his nurse practitioner had indicated that he was in the middle of his final procedure for the day). Fortunately, we'd briefed Karen on the questions we wanted answered and she was able to get the details for us. Lyle's surgery is definitely scheduled for sometime Tuesday morning. Given that it's a non-emergency procedure he could still be bumped but we'll deal with that if it happens.

• I finally got my Christmas shopping finished today. Finding the time for it has been extremely difficult. With only one exception I didn't do any on-line shopping this year (on-line shopping is just so twentieth century). Unfortunately, I can't mention any of the cool stuff I got for Paloma since she could just read this and the surprise would be gone.
• We got to the NICU quite late (like maybe 5:30) and found Terri holding Lyle. Bonding with him she said. He was bored earlier in the afternoon so she had taken him for a little stroll to look at the Christmas ornaments that have appeared around the ward over the last couple of days. He especially liked the bright and shiny balls dangling from the door to Room 2. Terri started them swinging and he was fascinated by the motion and the flashing colours.
• Lyle was awake enough and hungry enough to do a good job of nursing today. He and Paloma sat together for the better part of an hour. At the end of that time we were confident that he'd had enough to satisfy his little belly. As soon as he was full he started snoozing.
• Then we woke him up again by giving him a bath. Oddly enough he didn't cry at all this time but actually seemed to enjoy it. He watched us with trusting eyes while we soaped him up and scrubbed him down. Then we dressed him in the Santa Suit very kindly loaned us by Kim, our neighbour from down the road. The nurses went gaga over him.
• At shift change we met Jackie, Lyle's nurse for the evening, just in time to say "see you later." We bundled Lyle up and then took him for a walk. This time we left the stroller behind it being a less than noble steed for Santa (where's Rudolph and the sleigh when you need them?). We just carried him and walked around until we found an empty alcove to plant ourselves in. The big difference between sitting by Lyle's bed and sitting in one of the alcoves is the noise. The NICU is perpetually noisy with the throbbing and humming of all the life support equipment, the calls over the intercom and the general hustle and bustle of the nurses who have to talk loud enough to be heard over the general hubbub. The alcove is blessedly quiet. We overheard occasional snatches of conversation as people walked by but are otherwise undisturbed. It's a nice taste of things to come (when we get Lyle home that is).
• Around 8:00 Jackie came looking for us. Lyle was scheduled for another feeding and she wanted to make sure he didn't miss out on it. Paloma and I took Lyle back into one of the parent rooms and nursed him once more before we returned to the NICU. He was pretty sleepy this time and didn't do so well. Paloma decided that he should be gavaged when we took him back.
• But first came the photo opportunity. We've been wanting to take a picture of Lyle to use on a Christmas card and we finally remembered all the accessories including his Christmas stocking which we hoped he would fit into. He did. It's the kind of picture that you just know he will hate when we trot it out year after year. I probably won't post any of our Christmas photos online until I've had a chance to make the card and send it out. Just so as to not spoil the surprise. Suffice to say he looks astonishingly cute.
• It was a fine day, made better by the discovery of a sheet of paper in Lyle's chart which under the heading of Plans said, "Release to home next week." What a fine Christmas present that would be.

• It was so beautiful here today. Warm and sunny. We met Robert and Denise for lunch at the Dynasty Restaurant in Capitola (sorry, oddly enough they don't appear to have a web page). They do a sort of dim sum. Not the usual Cantonese style. I think this was Shanghai-nese style. Interesting and different. Plus, of course, it was great to hang out with Denise and Robert. After lunch we walked down to Pleasure Point (you'll have to select Pleasure Point yourself at that link) and watched the surfers for a while. Paloma was delighted to spot an otter cavorting among the waves and surfers. I was in the middle of my "what a bunch of goofs" rant when I discovered that Robert surfs and that he was "hearing the music" (the Hawaii 5-0 theme song of course)and longing to be out there with them. Sorry, dude. What can I say, I was bitten by a surfer once and it left me rabid.
• Karen was Lyle's nurse again this evening. We arrived, packed up Lyle and took him out to play. Karen was, I think, a little disappointed that we didn't stick around to visit but she thought we were doing the right thing. She said that the experience of having Lyle to ourselves would make us much more confident when he was actually released into our loving care. I feel that we can do everything needed. The only really hard part will be looking after him 24 hours a day. We're accustomed to visiting, playing parent for a while and then going home when we're tired. Paloma is fierce. If his diaper needs changing she will not let me leave it for his nurse. She browbeats me into changing it.
• We ended up in an alcove on the third floor (one up from the NICU in case you were wondering). This time we were prepared. We'd stopped at Zanotto's #2 in Scotts Valley and picked up sandwiches. You know, it's hard to eat a sandwich when you're holding a wriggling baby who wants your undivided attention. Finally we clued in: Lyle was hungry. D'oh! He is such a good baby. He always tells us what bothering him (we often don't understand but we're learning). Fix the problem and he's happy again. The nurses tell us the same thing, if they leave him alone too long he will start fussing. He stops as soon as they drop everything and hurry over to talk to him. Anyhow, Paloma very bravely breastfed him while we were sitting there in the alcove. Karen had encouraged her to try it since, as she pointed out, we wouldn't always have a secluded room somewhere in which to nurse him. Would you want to nurse your baby in the bathroom? Yuck. I thought not.
• After the shift change we took him back and hung out with Karen for the rest of the evening. She's a lot of fun. She suggested, very gently, that perhaps yellow was not the best colour for a baby recovering from jaundice. She also said that it's hard for a blue baby to look good in baby blue. Keep that in mind if you ever have a baby with a heart problem. Karen showed us some pictures of her youngest son dressed as Captain Hook. He would wear that outfit everywhere if he was allowed to. Kids are so cool that way. I've seen kids dressed as Superman in the grocery store (and not only when it was Hallowe'en). Paloma wondered when it stops being okay to dress the way you want to? When does this horrible conformity in clothing set in? How old can you be and still get away with child-like eccentricity? When I see the guy walking around Santa Cruz in his Viking helmet I think, "uh oh, loose grasp on reality in sight, evasive action required."
• I'm dreading Lyle's operation on Tuesday. It's not like we can explain what's happening to him. It was like this before his intestinal surgery. He was so much fun then. Happy and interactive, always pleased to see us. And then after the surgery he was very sore and unhappy. I hate having to put him through yet another period of recovery. The responsibility of being a parent weighs heavily on me. Deciding what's best for my child is hard. I can barely be allowed to decide what's best for me. Am I an adult yet? It doesn't feel like it sometimes.
• Lyle started crying when we bundled him back into his crib. Oh no, we can't leave him when he's crying. That would be wrong. Paloma picked him up and he quieted a bit. She checked his diaper. It was very wet. We changed it, wrapped him up again and he went right to sleep. What a guy.

• Dr Benitz was waiting to talk to us when we arrived. He told us that Lyle was still scheduled for surgery tomorrow morning although he still wasn't sure of the time. One of the anesthesiologists was there at the time going over Lyle's chart to decide what he was going to use to knock Lyle out for the operation. Interestingly enough, it is the anesthesiologist who books the time in the operating room. So Dr B asked him when the operation would take place. Lynda already knew. It's supposed to happen at 10:30 tomorrow morning.
• Dr Benitz also told us of the latest change to Lyle's regimen. He is on completely ad lib feedings. Basically he can eat whenever he's hungry. In fact, he has to be hungry and demand food before they will feed him. No topping him up with a gavage feeding. He called it "tough love". Lyle has to learn that he's part of the equation too. He has to learn that he has some responsibility. They still want him to get 60 cc's of formula enhanced milk every three hours but if he did 80 cc's and then waited four hours for his next feeding they would be happy with that too.
• Then Paloma and I packed up the boy and his gear and camped out in one of the alcoves again. Paloma breast fed Lyle (with a blanket discreetly covering him). We passed him back and forth. We ate dinner. It was all very domestic and low key. We'd like to be doing this at home. Maybe Friday.
• When we returned Lyle to the tender care of Lynda around 8:30 she told us that Dr Huhn wanted to talk with us before the operation tomorrow and asked that we be there around 10:00 a.m. to sign the consent form. Since that's earlier than usual we decided to make it an early night.

• After a quick stop at the post office to send off a somewhat late Christmas present (sorry Natasha) we left Santa Cruz around 9:00 a.m. to be at the NICU by 10:00 (as requested by Dr Huhn). Traffic was heavy. I was reminded of all the mornings I commuted to Redwood Shores with Karen while working at Oracle. Lyle was hungry. He had been NPO (nothing by mouth) since midnight. Gayle said that whenever she came near him he would fuss, "hey! hey you! I'm hungry now, please feed me." He was quite upset when she didn't.
• Dr Huhn brought the consent papers by and talked with us some more about the procedure. He showed us the MRI pictures of the insides of Lyle's skull. The enlarged ventricles were clearly visible. Distressingly so in fact. As we were talking to him Gayle got a call from the operating room to say that they would be there to get Lyle around 10:45. A little later than originally planned but not unexpectedly so. I told Dr Huhn that we were concerned that Lyle would be receiving more antibiotics. I told him about the fungal infections Lyle had got after the last couple of operations and that there was some evidence that Lyle's hearing had suffered from previous courses of antibiotics. Dr H said that they would use a very narrow spectrum antibiotic which wouldn't kill off all of Lyle's bacterial flora. This would make it less likely that any yeast in his system could take over. He also said that hearing damage from antibiotics is associated with extended courses. They would only be Lyle three or four doses. One before the surgery and a few more after.
• Paloma and I took turns holding Lyle and comforting him. He was very good. Even though he really wanted food he was quite happy to be rocked while sucking on his pacifier. It looked like he was sucking hard enough to actually extract sustenance from it. Around 10:30 we put him back in his hot bed and got him hooked up to the portable oxygen saturation monitor and oxygen tank so he was ready to go when the anesthesiologist came to get him. She didn't want them tapping their fingers while we got him ready.
• Time passed.
• Lyle started fussing again.
• Around 11:15, when it was clear that they weren't going to be there any time soon, Paloma took him out of the bed to comfort him so more. Various nurses would walk by and do a double take when they saw us still sitting there. "Hasn't he gone yet?"
• At 11:45 Gayle had the receptionist call the operating room to find out what was happening. The previous procedure had taken much longer than expected. They were just cleaning up the operating room and they would come and get Lyle at 12:15. Yeah, right. Paloma dashed down to the car to get her breast pump since she was uncomfortably full. She set up a screen next to Lyle's bed so she could pump while we were waiting. She finished just before 12:15.
• Finally at 12:30 the anesthesiologist came for Lyle. She said that she would give him caffeine citrate after the operation in hopes of getting him extubated quickly. She warned us that there was a 50% chance that they wouldn't be able to extubate him. If he got into a state of periodic breathing (where he breathes on his own for a while and then stops and lets the ventilator do it) they wouldn't extubate him until tomorrow. She said that it wasn't a hugely bad thing for him to remain intubated after the operation. Just be aware that it could happen.
• We kissed him goodbye and watched as they wheeled him off. Tears were shed.
• Gayle said that although the operation would only take and hour and a half, the preparation time before and the cleanup time afterward could easily add an extra hour. She said not to expect him back until 2:30 at the earliest. More likely 3:00 or even 3:30.
• Rather than sit around and wait we decided to go to the Stanford Mall and have lunch and browse the stores. It was a bad time to be there looking for food. Thousands of people were there Christmas shopping and the restaurants were all full. After wandering around in an indecisive fashion for far too long we decided to try La Baguette. They had ready-made sandwiches in a Parisian style. Meat and cheese in a buttered baguette. Quite nice. Simple yet satisfying.
• We walked around for a while but didn't do much shopping. We finally headed back to the hospital around 2:30. Lyle was back! He had returned around 2:10 and Dr Huhn had been by a couple times already looking to talk with us. Even better, Lyle was extubated. He was breathing just fine on his own thank you very much. Through the door of the NICU we could hear him crying and see his arms waving around. The operation had, according to Dr Huhn, gone as well as they could have hoped. Dr Moss was able to make space inside Lyle's belly for two feet of catheter. More than enough to handle his future growth. Everyone was very pleased. I have posted some pictures of his head where they shaved it and inserted the shunt valve in the album named Lyle Bartley Vachon Part 15. They're not too gross.
• Except for Lyle who was sore and hungry and wouldn't be allowed to eat until tomorrow morning. We sat by his bed and moistened his lips with a gauze pad dipped in water. He loved that. He sucked on the gauze in a most passionate manner. It calmed him considerably. His mouth was so dry at this point that he couldn't even suck on a pacifier. Once we'd wetted his mouth a bit he was able to work the pacifier much better and took a lot of comfort from it.
• Then we were kicked out for the 3:00 shift change.
• When we returned Lynda had Lyle all swaddled and mostly calm. He gets some Tylenol to help with the discomfort. It's in suppository form. The poor guy. Someone is always poking him or prodding him or doing something unpleasant to him. He forced it out the first time she tried to get it in his little butt. He was really upset about the loss of his dignity. We calmed him as best we could. Whenever he cried we told him he was a good boy and he had every right to cry.
• The rest of the afternoon was spent sitting by his side and reading to him. We headed home around 6:00 it having already been a long day for us. Fortunately he wasn't crying when we left. That would have made it much harder to go.
• Since it was the rush hour I decided to drive home via the coast so we took back roads through La Honda to Highway 1. The thought of sitting in traffic on Highway 17 left me cold. This way took a little bit longer than our normal drive but we were still home in time to watch the all new episodes of Buffy the Vampire Slayer and Angel. Whew!

• On the way out of town this afternoon we stopped at the medical supply company here in Santa Cruz to pick up one of the feeding tubes we will use for Lyle. Yesterday Gayle told us it would be a good idea to get one and practice using it under a nurse's supervision before we got him home. It's a CORPAK CORFLO feeding tube. It's very soft and has a wire that you remove after it's been inserted. This type of tube can be left in for a month if necessary. Lyle, of course, won't leave it alone for that long. A while ago Dr Lori Lowthert told us that when Lyle would get bored in the early hours of the morning he would pull his tube. She would often walk by and find him waving it at her in a most self-satisfied way.
• Lyle is much more comfortable today than he was yesterday. Lynda gave him a shot of morphine around 10:00 p.m. and he slept through most of the night. He was allowed to eat today and is much improved for it. His nurses today are Caroline (who is, oddly enough, from Ontario... Canada not southern California) and Valerie, a recent nursing graduate who Caroline is training. Caroline was worried that Lyle's belly was looking more distended than usual as though the milk they've been feeding him isn't moving through it fast enough. This could be a not unexpected side effect from the anesthesia. Unfortunately she's not really familiar with his belly since she's never taken care of him before. She asked Dr Benitz to take a look. He said that Lyle's belly looked fine. Even before this latest surgery it poked out a bit. We checked it out too and didn't think it looked any different.
• Lyle is still tethered to his bed. He has an IV drip providing a certain amount of fluid every hour. We are allowed to take him out of his bed and we do so. To me he seems somewhat sore. Particularly when his head is touched. I'm not complaining about it. I think he's allowed to be sore and cranky. After all, he did have surgery yesterday. When Paloma breastfed him he would nurse for a while and then start crying. Perhaps because of her hand on the back of his head.
• After dinner Lyle's nurse was Linda. We've seen her around the NICU a lot but have never had her as a nurse before either. We took Lyle out of bed again and held him some more. We chatted a bit with Caroline who was in Lyle's room tonight. She said that she thought he should've been fed last night. It was, she said, cruel to deny him for so long the two things in life which provide him with comfort: food and being held. We tried to make up for it by holding him as much as possible.
• Around 8:00 Linda wanted to give him some of his medications. She put them in a bottle with some milk and I got to feed him. He did pretty good. He drank an ounce of milk mixed with Rum-K. He did so well that Linda filled up his bottle with another ounce and a half of milk and I tried to get him to take that too. He did about half of it in the space of an hour before running out of steam. Every time he fussed I put him on my shoulder to burp him and then would try him with the bottle again. It was a slow process but so what? He almost got his full three hours worth of food in the space of an hour. I was pleased.
• The big question is when will we get to take him home. We've heard, "Friday" and we've heard, "no later than Sunday". It's hard not to get excited even though we know that there is a lot that has to go right between now and then
• We got home time to catch the tail end of Junkyard Wars followed by an all new episode of Changing Rooms.

• Paloma called me at work around noon. She had just talked to Rebecca, Lyle's nurse until 3:00, and learnt that Lyle is running a bit of a fever. He's also not taking the bottle very well. They may gavage him. I'm worried by this news. What does it mean?
• When we arrive Karen tells us that Lyle's fever spiked at 38.5 C. This is high for a baby whose temperature usually hovers around 36.7 C. He may be fighting an infection. More likely, however, is that he just got dehydrated yesterday. When they checked his fluid intake they saw that it was about a third less than it should have been: 40 cc's every three hours instead of 60 cc's. They were trying to have him demand his feeds. The hope was that he would get hungry enough to take in all the fluids he should. That obviously didn't happen. This indicates that when he comes home he will need to be gavage fed for a while. Karen said that Dr Benitz is very comfortable with this. He knows that we will do what we have to do to keep Lyle well fed. Paloma is more than willing to breast feed him every hour and a half if that's what it takes. Right now his mouth is so dry he's having problems sucking on his pacifier. He seems much less happy today than he was yesterday. His eyes are only open part-way and he makes discomfort noises. Probably just due to being hungry. His temperature is still a bit high: 37.6 C.
• Just to be safe they have drawn some blood and are running some tests to rule out a possible infection. Karen is frustrated because the blood was taken around 2:30 and no results have appeared four hours later. She gets on the phone to the lab and "encourages" them to give Lyle's tests priority.
• Dr Benitz appears around 6:30 and tells us again that the most likely reason for Lyle's fever is dehydration. As we're taking to him the blood test results appear on the computer. He and Karen discuss them and decide that they can be accounted for by inflammation due to his surgery on Tuesday. In light of this Karen suggests we take Lyle out for a stroll. Especially since we will probably have him at home with us tomorrow. We bundle him up and find an empty alcove on the third floor. Paloma nurses Lyle while I read to them.
• After shift change we return to the NICU. Lyle's temperature has risen back to 38.5 C. I figure this is just due to him being wrapped up while we had him with us. It's much cooler in the alcove than in the NICU and we didn't want him to get chilled. Karen isn't there so I hold Lyle and try bottle feeding him. He does quite well taking in another 20 or 25 cc's. When Karen returned we sat and chatted with her for a bit until Lyle throws up come partially digested breast milk while I'm burping him. Karen says that he's probably just relishing being full after yesterday and didn't know when to stop. She figures he only lost 5 or 6 cc's.
• His temperature is still high. Karen is very worried. Dr Benitz and Dr Carol Lin arrive at his bed side. The throwing up and fever imply that he has an infection. More blood work is ordered. Paloma is crying. I feel sick and faint. I have to sit down. Not more bad news! We can hardly take it. Lyle's supposed to come home tomorrow. If he's septic than that's not going to happen.
• Karen urges Paloma and me to get some food. We haven't eaten since lunch. We drive into Palo Alto and find a deli that's still open. It's gone 10:00 p.m. Paloma won’t eat. I have a bacon, lettuce and tomato sandwich with French fries.
• When we get back to the NICU the news is bad. The doctors want to start him on antibiotics but can't do so until one of the neurosurgery team arrives to tap some cerebrospinal fluid from his shunt. They want a clean sample. They tried to do a spinal tap while we were gone but were unable to get any fluid. Lyle's getting some more Tylenol to help bring his fever down but his temperature is still high. Karen mixes the medication with some milk and feeds it down his gavage tube. As we watch him he gets one of those "I think I'm going to be sick" looks on his face. He throws up a bit of the milk he was just given.
• Karen points out that we wouldn't want to take Lyle home on Friday and then end up in the Emergency Room of the Dominican Santa Cruz Hospital with an out of control sepsis the next morning. While true this is not a comforting thought. I'm not even sure I would've recognised something bad enough wrong to require a trip to the ER. I thought Lyle looked great when we had him to ourselves upstairs. He was eating well and seemed very responsive. There is so much about raising a child that I don't know. This has shaken my confidence in being a good father.
• We are devastated. I see red eyes on some of the other nurses in the room. I can't stand their kindness when they come over to say they are sorry. I want us to be left alone in our misery.
• The neurosurgeon arrives and explains the plan. They will determine the location of the infection and then decide what course of action to take. If it's in his lungs or urine then they can leave the shunt in and just treat him with antibiotics. If it's in his blood or cerebrospinal fluid then the shunt is most likely the source of infection and will have to be removed. But, I say, Lyle will still have hydrocephalus. How will they treat that if the shunt is removed? He says they would treat the infection and reinstall the shunt once it had gone. I feel sicker. The course of treatment with antibiotics is about 14 days. If Lyle develops a yeast infection, as he is prone to do, the course lasts 21 days. Our biggest fear is being realised. Lyle gets infections after surgeries. I expressed my concern about this very thing to both Drs Benitz and Huhn and they said that another infection was unlikely since the source of his previous infections was likely due to fecal matter from his intestines getting into his blood during the previous operations.
• We headed home around 10:45. Our hopes for a pre-Christmas release have been dashed.
• Paloma called the NICU before we went to bed. None of the blood work had been completed yet although Paul says that Lyle's temperature is slowly dropping.
• Lyle is 17 weeks old today.

Apologies for not posting updates for the last few days. I just haven't had the time or energy to write. I'm almost caught up now so please bear with me.

Morning…

• Paloma called Paul again this morning. There appear to be bacteria in Lyle's cerebrospinal fluid. Paul thinks this means that the shunt is the source of infection. Paloma does some research on the Internet and finds that infections after shunt surgery are common. Bacteria from the skin gets into the incision and contaminates the blood. The passage for the shunt into the brain acts as a superhighway for infection. Lyle definitely won't be home for Christmas.

Afternoon…

• The report we got from Paul this morning wasn't quite correct.
• I called the NICU to talk to Karen and since Dr Benitz happened to be at Lyle's bedside she had him talk to me. No bacteria have grown out of the sample of cerebrospinal fluid taken last night. What they actually found was white blood cells in the CSF. Neither Dr Huhn nor Dr Benitz is quite sure what to make of this development but it is not (yet) indicative of an out-of-control infection. In fact, so far there is no indication of bacterial infection at all. Nothing has grown out of his urine or his blood or his cerebrospinal fluid. It could be that the elevated readings from his blood tests are purely a result of the operation he underwent on Tuesday. Elevated readings are a sign of inflammation and inflammation is common after an operation. Lyle will be watched carefully over the next two or three days. He may have a viral infection that he just needs to get over. Unfortunately there is not much that can be done to help him with that. We are in wait-and-see mode for now.
• Dr Gaynon found Lyle's eyes unchanged this morning. Not exactly the desired finding but not overtly bad news anyhow.
• We hope that they will not have to remove his shunt. If that happened we could see a cycle of repeated operations followed by repeated infections playing out ad nauseam.

Evening…

• Paloma spent the afternoon baking cookies and so we didn't head up to the NICU until gone 5:00.
• We ended up walking from the parking lot into the hospital around 6:00, right when Dr Benitz was leaving. He spotted us and came over to give us the latest news. The situation was much as he told me this afternoon. They have started doing viral cultures to see if they can identify whatever it is that is making Lyle feel so bad. After talking it over with Dr Gaynon he decided to give Lyle a blood transfusion. His hematocrit is a bit low (about 28%) and Dr G would like to see it higher (over 30%) to help Lyle's eyes mature properly. Dr B said that Sunday would be Decision Day. That was when they would decide what is next for Lyle. He said not to be surprised if they wanted to keep Lyle in the NICU until next Friday. That would definitely give him time to get over whatever he has and allow Dr Gaynon another crack at his eyes. The eye issue is a bit complicated since Dr G is technically on holiday for the last two weeks of December. Despite this he still comes by the NICU once a week to check up on his eye patients. He is a very dedicated man. Dr B told us that from his reading of Dr Gaynon's report Lyle's eyes, while still at Stage 3 ROP, have actually improved a little over last week. He calls them Stage 3 Regressing.
• Dr Benitz is off-service as of Sunday and won't be in over the weekend unless one of his ECMO patients needs him. ECMO stands for Extra Corporeal Membrane Oxygenation and is a kind of artificial lung used on babies with severe lung disease. Happily Lyle has never needed that treatment. We said goodbye to Dr B and Paloma gave him some of the cookies she'd baked this afternoon.
• Paloma's cookies were a huge hit. Caroline, one of Lyle's off-and-on nurses, was very impressed that Paloma had taken the time to do something so nice for them after all that we'd been through yesterday.
• Lyle doesn't seem as sick to me today as he did yesterday. He still isn't as alert as he was before he got sick. To me it looks like he has a virus. He looks achy. Karen says that a viral infection is likely since if it was bacterial after 24 hours of treatment with an antibiotic he would definitely be feeling better. All tests are complicated by his recent surgery which would skew the results even in the absence of a real infection. He was getting more blood as we arrived and is looking much pinker. He was very pale yesterday with a mottled look to his skin. Karen tells us that we can take him out of bed once his blood transfusion is complete. She has another 30 ml's to give him over the space of an hour. We should get to hold him after the shift change.
• After dinner and pumping we returned to Lye's bedside.
• Karen said that she is glad to see us looking so much better today after last night's bad news. She was very worried about us. She said that I was obviously in shock. All the blood had drained out of my face and she was scared that I would pass out then and there. I remember having that prickly sweating feeling on my scalp that usually means I'm going to throw up. She called it a classic fight-or-flight response to a frightening experience. She said that we have been through a very difficult time with Lyle, often fearing for his very life, and that if we ever found ourselves suffering post traumatic stress disorder she, or Dr Benitz even, would be happy to help us. One of the warning signs would be if we ever found ourselves avoiding the NICU (the site of the trauma) and hence not visiting Lyle.
• Paloma and I took turns holding Lyle which seemed to calm him. His temperature remained high however so Karen suggested giving him a tepid water bath. That sounded like a good idea. His skin looked dry and sticky and itchy and we all agreed that after having a fever it was nice to get clean again. He didn't enjoy the bath as much as he usually does but he settled into it. He is such an accepting little guy. "Okay," he seems to say, "I don't particularly like this but since it is my lot in life I will put up with it." Afterward his temperature had dropped to about 37.7 C and so we considered it a job well done.
• We stayed until almost 11:00 again tonight. We both agreed that it was good to have an uneventful day with comparatively good news to balance out yesterday's experience.

• When I called the NICU this afternoon Emily, Lyle's nurse today, said that a Gram-negative staphylococcus bacteria has grown out of the sample of cerebrospinal fluid taken on Thursday evening. I ask her what that means and how it will be treated. She said that I should really talk to a doctor. I told her that we would be there around 5:00 and that we'd like to speak with someone when we arrive.
• When we got there Emily paged a doctor for us. It turns out to be the new resident looking after Lyle. Her name is Swati Agarwal. She told us that it was actually a Gram-positive staph. Paloma later explained that the "Gram" in "Gram-positive" is some guy's name. He invented a kind of stain that reveals bacteria. I'm still not sure what the difference between Gram-positive and Gram-negative might be. Is one worse that the other? Dr Agarwal explains that there are several possible explanations for the bacteria in Lyle's CSF sample. It could be a contaminated sample or it could be a bona fide infection. The bacteria in question commonly resides on the skin and could contaminate a sample taken even under very sterile conditions (such as when tapping a ventricular shunt). She said that the NICU pediatricians will make the case that it is a real infection. If the neurosurgeons agree then they will probably remove Lyle's shunt. From our point of view we would prefer it if the bacteria came from a contaminated sample since it would mean two less operations for Lyle (one to remove the shunt and then one to replace it). However, as Dr A pointed out, once a shunt catheter is infected it is very difficult to clear that infection. The bacteria hides inside the catheter and is not easily exposed to the antibiotic medication.
• After the shift change Jan is looking after Lyle. It turns out that 17 years ago she had a premature baby who spent 4 months in hospital. This was before she was a NICU nurse but around the time her interest in caring for sick babies was increasing. She actually returned to work while waiting for her baby to come home. I can't imagine how hard that must have been. She was in one hospital, he in another. At one point they considered transferring him to her hospital but it was decided that she would be unable to focus on any of the babies in her care if her son was there too. When she took him for his first visit to a pediatrician the receptionists looked at his age on his chart and then looked at him and then started whispering among themselves, "… he's four months old…" and "… doesn't she feed him…". It got so that when people looked at him and asked if he was a newborn she just said yes to avoid long and drawn out explanations. We were divided on whether it would be easier to be a nurse with a baby in the NICU or not. On the one hand you'd understand all the jargon and so the learning curve wouldn't be so steep. On the other you’d know everything that could go wrong.
• Lyle seems a bit better today. He still seems achy but he isn't as fussy as he was earlier.

• Apparently they took a sample of Lyle's cerebrospinal fluid right after his operation and that sample isn't growing anything at all. This is standard operating procedure. I think this particular negative result is a good thing.
• After some discussion the neurosurgeons decided to tap Lyle's shunt again this afternoon. Noushin told us that he was alert and interested during the procedure and didn't show any signs of being in pain. The dressing has been removed from the incision site on his head and while the skin there is a little red there is no sign of a raging infection (not like the pus that oozed from the incision on his belly after his reanastomosis). I have posted a picture of this in Lyle Bartley Vachon part 15. It's not for the very squeamish. Anyhow, the hope is that this second sample will not grow out anything.
• My big question, however, is if the sample taken last Thursday was contaminated why has Lyle been running a fever?
• The length of time it is taking for him to get better could mean that it is meningitis. This is an inflammation of the membranes enclosing the brain. It is a very serious illness. It could also explain why it is taking so long for the antibiotics to make him feel better. It is notoriously difficult to get medications across the blood-brain barrier. If it is meningitis then they will almost certainly remove the shunt.
• Paul told us that Lyle's CRP (C-reactive protein) has been high over the last two days and this is usually a sign of infection.
• Despite everything, Lyle is actually looking a lot better today than he was yesterday. So much so that Paul suggested we take him out of the NICU. Which we did happily.
• As we were leaving for home Paul brought in a guava berry liqueur cake that he'd baked. He claimed it was just like a rum cake only with the aforementioned liqueur replacing the rum. He also claimed that the baking process should remove most of the alcohol. Yeah, right. I could taste the alcohol in the cake. I told him that if I got stopped for drunken driving that I would hunt him down (pretty easy, actually, since we know where he works!).
• As it turns out, we made it home uneventfully.
• Lyle is four months old today.

Day 124 (Monday - Christmas Day) 

• Paloma cooked a turkey this morning. She got up to pump while I was still lounging in bed and then started the bird cooking. She also made candied yams, stuffing and cooked some string beans. Then we had a real Christmas feast while watching Miracle on 34th Street (the original not the remake!). I don't think I've ever seen it before.
• According to Noushin's report this morning, Lyle's temperature is pretty much back to normal. She actually had to dress and cover him since she was worried that he'd catch cold. So far nothing has grown out of Sunday's CSF sample.
• We took Lyle's presents to the hospital with us so that he could open and enjoy them himself. He didn't seem to get it. I had to help him with the packaging. He did seem to like the various stuffed animals and books that ended up in his bed but I could be reading something into his facial expressions that wasn't really there.
• Once again we got to take Lyle out for a walk. This time we scrambled up to the roof arriving mere minutes before the 7:00 p.m. cutoff. It was quite cold but we had a knit cap for the boy and we kept him well wrapped for the whole painful process. This was the second time in his life that we'd exposed him to the outside world. Pictures can be seen in the album called Lyle Bartley Vachon Part 15.
• We ate our sandwiches (turkey and stuffing, yummy) and then went back inside.
• Our time alone with Lyle must seem hopelessly mundane. It is, however, healing for us. Sometimes when we're in the middle of a crisis it easy to lose sight of the big picture. I have to keep reminding myself that Lyle is not just a shunt and not just bad eyes and not just potential hearing loss. He is a delightful little baby who has a unique and lovable personality all his own (yeah, I know, every parent says that, they're all deluded, I just happen to be right). He's the reason we hang in there through all the ups and downs of NICU life.
• By the way, we finished reading Little Men. It was very good. Paloma gave me a copy of Anne of Green Gables for Christmas. I gave Paloma a copy of Anne of Green Gables for Christmas. Scary, eh? We must be meant for each other. That will be the next book we read.

• Still no growth from the latest CSF sample. Gayle said that Lyle had a temperature of 37.7 C this morning so she gave him some more Tylenol.
• I asked Gayle the question mentioned here on Sunday: if Thursday's CSF sample was contaminated why did Lyle get a fever? Well, she pointed out, he did have surgery a week ago. But why would it take a couple days before he developed a fever? He was, she said, getting Tylenol around the clock for the first couple days after the shunt placement operation. That could easily have masked the developing fever. Despite his robust size he still doesn't have a whole lot of reserves and fighting the inflammation from an operation would have the same affect on his blood chemistry as fighting off an infection.
• But, I responded, how could the sample get contaminated? One of the neurosurgeons took it under (supposedly) sterile conditions. She said that there were literally dozens of opportunities for sample contamination. All it would take is one incautious (ungloved) touch. It could've been the neurosurgeon. It could've been the lab tech. Who knows? Of course, we hope that they decide the sample was contaminated since that means that Lyle could come home to us sooner. Time will tell.
• Before heading up to the NICU we stopped at Paloma's sister's house and had lunch with her and Philip (Lyle's cousin). We then made a lightning visit to Dave and Greg who, very thoughtfully, had made us tofurky sandwiches for dinner. These were especially appreciated since we hadn't had time to prepare a dinner. The taste and texture were surprisingly like the real thing.
• Today Lyle was being looked after by Linda who was orienting Heather, a recent nursing program graduate. Linda was playing the role of cuddler when we arrived. Orienting could be kind of dull. The orientee is supposed to do all the work under the supervision of the more senior nurse which leaves nothing much for the senior nurse to do. Except cuddle our son! It's a tough job, reserved for the cream of the nursing crop.
• Everybody wanted to visit with Lyle today. Poor Paloma. Lyle was hungry. She wanted to breast feed him but every few minutes someone wanted to say hello. Even the privacy screen didn't deter them. Come on people! Paloma is a modest woman. What makes you think she wants you watching her as she breast feeds her son? Get your cheap thrills elsewhere. We'll let you know if we need your help.
• Lyle, we were told, is the NICU mascot. Even nurses who've never looked after him have to stop by to see how he's doing. The general consensus is that he will be released from the NICU, that he won't be sent to the Intermediate Care Nursery or back to Dominican. In many ways he is doing so well that he doesn't need the around-the-clock care provided by the NICU nurses but, given his history, everyone would rather be safe than sorry.
• We were somewhat surprised to learn that Lyle received another transfusion today. His hematocrit was around 32%, on the low end of normal. They decided he needed a boost. One of his nurses last week said that once a baby reaches a certain age and weight they don't like to give them transfusions since there is a feedback loop controlling the generation of new red blood cells. If the body determines that it has enough of them it slows production. If you production drops off too much the baby could end up needing another transfusion. Still, the result for now is good. He looks nice and pink.
• I did get a chance to talk with a couple of the NICU fellows (pediatricians who specialise in neonatal intensive care) about Lyle's "infection". One of the doctors (I'm sorry to admit that I didn't catch her name) said that bacteria could hide inside the shunt catheter but the shunt would likely stop working if that was the case. It's a very fine tube and it wouldn't take much growth inside it to gum it up completely. Lyle's shunt is obviously still working. His fontanel is very soft, depressed even, and his head circumference has actually decreased half a centimeter or so. She said that the planned course of treatment is to continue with the Vancomycin for a bit longer (length of time to be decided by the neurosurgeons) while keeping a watch on Lyle's blood chemistry. Then they would stop the antibiotic and watch him for a while more. If he then developed signs of sepsis the shunt would have to be removed.
• Paloma's brother, Ralph, and his wife, Lan, and daughter, Natasha, were supposed to stop by the NICU this evening around 8:00 to meet Lyle. We took him out of his room and sat in one of the alcoves while waiting for them. I read to Paloma while kept an eye on the elevator. Then she started reading Anne of Green Gables to me while I watched out for them. I love the contrast between the talkative Anne and the taciturn Mr. Cuthbert. Very amusing.
• When there was no sign of them by 9:00 we decided to put Lyle back to bed and head home. At 9:30 as we were getting him all tidied up, the receptionist called us. They had arrived. Paloma went out to greet them while I got Lyle ready to go out once again. The poor little guy. Just when he thought he'd be able to sleep for a while. It was nice to see them again. They were happy to see Lyle looking so good. After hearing all the negative reports about his health they were expecting to meet a minor tragedy not a sweet little baby.
• I took Lyle back to bed while Paloma visited with Ralph and Lan. As I was leaving I chatted a bit with Kas. She said that she was disappointed for us every time she came to work and saw Lyle still there. She said that we were one of the reasons they all loved Lyle. She admired our ability to take the hard knocks and maintain our hope and optimism. She said they often see parents in our position who become hard and bitter, who start to blame the nurses. I told her that we can keep the distinction between the messenger and the bad news clear. And that Lyle was such a wonderful baby we just had to keep coming back for his sake.
• That being said, as Paloma pointed out the other day, it gets harder to bounce back after every disappointment. We're telling all the nurses and doctors that we just don't want to hear the release plans any more. Call us the morning of his release and say, "by the way, bring your car seat when you come in today."

Morning…

• The plan now is to continue the Vancomycin until next Sunday all the while watching the CSF samples to see what develops. That would be a ten day course of the antibiotic. I doubt that Lyle will come home before the end of the year. Perhaps we'll try to be in the NICU at midnight on the 31st. That kind of sounds fun, in a perverse kind of way.

Evening…

• Lyle has been fussy all day, Carol told us when we arrived this afternoon. The only way she could keep him happy was by holding him. She said that Paul was holding Lyle when she arrived that morning and she had the impression he'd been doing so for a long time. Carol had not yet fed Lyle and we thought that he might nurse well if he was awake and fussy. No such luck. Almost as soon as Paloma took him he fell asleep. He nursed for a few minutes in a very half-hearted manner. We finally just gavage fed him. He must've been exhausted from waiting for us.
• Dr Bill Rhine is once again the neonatologist in charge of the NICU. He came by to say hello while we were passing Lyle back and forth ("you hold him", "no it's your turn", "no it's not, I held him last"... we're much too polite). He said that there are two different opinions regarding the sample of Lyle's CSF which grew out the staph bacteria. One says that it was a contaminated sample. The other says that it was a real infection which is being treated by the Vancomycin. He is of the latter opinion. He feels that Lyle's behaviour is more consistent with an infection than anything. When the stop the Vancomycin on Sunday (after the full ten day course) they will hold on to him for another couple of days to see what happens. I asked if two days was enough time for any bacterium not killed by the antibiotic to reveal itself. He thought that it was. If that happened they would have to base further treatment on what developed.
• On thinking about his comments afterwards I wasn't sure if he felt that the decision to put a shunt in Lyle was a good one. I can't remember his exact words but the impression I had was that he felt the indications in favour of the operation were ambiguous. I will try to pin him down on that the next time I see him.
• I took the opportunity to ask him what he thought about Lyle having failed a couple of the ALGO tests. He asked if we thought Lyle could hear us. Sometimes it seems like he responds to our voices but perhaps he just sees us moving at the same time as we're talking and so points his eyes in our direction. Often Lyle will start crying when another baby in the room cries. But this could easily be a coincidence. Every test which implies Lyle can hear could be explained by something else. Dr Rhine said that the next step would be a Brainstem Auditory Evoked Response test. This is a very subtle and accurate test. It will tell whether Lyle's hearing has been damaged and, if so, where the damage occurred. It will be performed on an outpatient basis after Lyle's release.
• Before he left Dr R said that he was on service for the next three weeks and that Lyle would go home before he was off service. We just laughed. We've heard that one before, we said. We repeated our desire to hear about Lyle's release on the day and no sooner.
• We took Lyle out over the shift change again. We took turns holding him and being read to. He slept the whole time we were there. Pat, his nurse when we returned to the NICU around 8:00 even gave us permission to not change his diaper. If he's sleeping then he needs to sleep and a wet diaper won't harm him. We left early in hopes of getting to bed early and catching up on some missed sleep. We did, however, watch a couple more episodes of Junkyard Wars (the ones with the fire boats and the dragsters in case you were interested). I think Paloma thought I was silly to stay up until 11:00 when I could've been in bed by 10:00. Okay, that's probably true but it was my show! I couldn't just abandon it now, could I? 

• Today was very uneventful.
• No, I mean really.
• Lyle's temperature was pretty much normal (37.1 to 37.4 C).
• He nursed quite well for the better part of half an hour shortly after we arrived. Lynda topped him up with an extra ounce of milk plus Pregestamil formula. He continues to gain weight. Slowly but surely. He is now 7 lb. 7 oz. It's pretty clear, however, that he's not yet ready to get all the calories he needs from demand feeding. He nurses for a bit and then loses interest. He pops Paloma's nipple out of his mouth with his tongue. It's really quite amusing.
• We took Lyle out of the NICU around 6:00 and didn't bring him back until it was time for his Vancomycin at 8:00. As usual we took turns holding him and reading aloud. The reading part makes our time there special. We ate dinner in the family room tonight and watched TV for a while. It was fine but... I don't know. Part of the problem is that the family room is so public. People go in and out. It just doesn't feel private. When we take over an alcove we can set the chairs to face the windows and don't even have to acknowledge the people walking by.
• Before leaving we put Lyle back in his bed. He was not too happy about this. One of the nurses warned us that when we get him home he's going to demand our attention around the clock. I can't really see this as a problem just yet. Maybe it will seem worse once we have him at home and can't go anywhere in the house without a baby in one arm. Lynda very kindly took Lyle out of bed and held him. In one way it makes it easier to leave knowing that there are people there to pay attention to him and cuddle him. In another way its harder knowing that someone else is bonding with our son. Lynda has probably spent more time with him over the last four months than we have.
• Preparations are still being made to send Lyle home. We're doing our best to ignore them. Too much depends on getting Lyle to the end of this course of Vancomycin and then seeing what develops from his blood work. His poor little heels have little slits all over them from all the blood they've taken in the last week. Paloma counted something like 15 separate sticks.
• Lyle is 18 weeks old today.

• Uh…
• We're really falling into a rut here. Lyle is doing fine. We got there around 5:00. Paloma nursed him for a while. We chatted with the nurses. We hooked Lyle up to his portable oxygen tank and took him out of the NICU. Same as yesterday pretty much.
• Our only excitement was when we got Lyle dressed in the new outfit Paloma had brought from home. He looked very cute and all the nurses flocked to look at him. He looked at all the faces gathered around him and started screaming. It was very funny.
• I took some new photos. You can see them in the album named Lyle Bartley Vachon part 15.
• Uh…

• Some time this morning it was discovered that Lyle's most recent IV catheter was no longer patent (this is cool medical talk that you can use to impress your friends; in plain English it means that it wasn't open, they could neither draw blood from it nor inject Vancomycin into it). All his peripheral IV sites had been used over the last week and so none of them could be used again today. She did manage to get a catheter into one of the veins in his head but the neurosurgeons were unhappy with it being so close to his shunt and they had her remove it. I'm very glad we didn't get to see this. I have seen other babies in the NICU with catheters in their head and it's ugly. It makes you feel like the baby is much worse off than is actually the case. When I talked with Gayle this morning she was waiting for word on what she should do about Lyle's next dose of Vancomycin. He was supposed to get a full ten day course of the drug but, apparently, the neurosurgeons thought he'd had enough earlier this week and it was the NICU pediatricians who'd decided to continue the treatment. There's a good chance, she said, that they'd just D/C it (more cool medical talk, it means "discontinue").
• When we arrived at the NICU Lynda told us that the Vancomycin had been discontinued. The orders have been written to perform a CRP test tomorrow. This will help them determine if Lyle is still fighting an infection or not. We hear rumours that they are talking of sending Lyle home but we're disregarding them. We've been excited and disappointed twice now and we're not falling into that trap again.
• Richard, one of the physical therapists at Packard Children's Hospital, came by to talk to us about massaging Lyle's scar. He explained what the scar should look like and showed us how we could encourage it into that form with some simple daily exercises. We have to put a little lotion on a finger and then draw it at an angle across the scar. Then do the same at right angles to the original pass. Finally we have to rub little circles on either side of the scar. The goal is for the scar tissue to be as easy to manipulate as the non-scar tissue. We should be able to pinch it and pick it up and move it around. Right now there are parts of the scar which seem to be stuck to the underlying tissue. With a little work that should no longer be the case.
• That was the major excitement of the evening. Other than that we just did what we'd done yesterday and the day before. Anne of Green Gables is very good and we're reaching the climax of The Amber Spyglass.
• I hope we'll have some more positive news for you tomorrow.

• Gayle told us that Lyle was having a good morning. They drew blood for the CRP test and hope to have the results by the time we get there this afternoon. This is the big test. The results will determine Lyle's future for the next month.
• It was so beautiful and warm today that we decided not to work on the Christmas cards after all. We walked downtown and enjoyed the sunshine and all the people gathering for the First Night celebration. On returning home we had a late lunch before leaving for the NICU.
• Lyle was holding court when we arrived. Two of the nurses, neither of them his designated nurse for the day, were at his bedside keeping him happy. One was holding his pacifier and the other was soothing his back. We took over both those jobs.
• Karen told us that the CRP had come back negative. No signs of infection!! The next hurdle is the sample of cerebrospinal fluid which the neurosurgeons will take from his shunt sometime soon. We figure that if they draw the sample tomorrow and culture it for two days we should know by Wednesday when Lyle will come home. I guess it kind of depends on when Dr Huhn is available since it seems as though he wants to draw the sample. The sample which cultured the staph bacteria was taken by his resident. We all thought that was significant except that Karen, who was there when the sample was taken, said that the resident was as sterile as could be.
• While we were sitting with Lyle Dr Rhine came by to chat. He just happened to be in the NICU this evening for the birth of a 28 week baby and he always stops by to say hello when he sees us. Karen told us that he gets attached to babies and their parents and that he really liked us. Well, it's mutual. We talked a bit about the what would happen next for Lyle and reiterated our desire to be told on the day he was ready to come home.
• Then we just did a repeat of the past few days. We took Lyle out of the NICU and sat with him for a while before returning him for his 8 p.m. medications. Then we sat by Lyle's bed and chatted with Karen and whoever else came by. It seemed that every NICU nurse wanted to come by and wish Lyle a Happy New Year.
• We really thought hard about staying until midnight but the thought of an hour long car trip at that time of night was less than appealing. We left for home around 10:30 and arrived with plenty of time to prepare for the arrival of the new year. Here's hoping that 2001 is nice and dull. All the best to you, our faithful readers. Thanks for your kind support over the past year.

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