Pictures for the month of April can be found by clicking on the camera icon .

• We took Lyle in for his third set of vaccinations today. I could feel quite guilty about it. He was so happy this morning little realising that he had yet another meeting with a needle scheduled.
• Dr Moler was much calmer than usual. The last few times we've seen him he's spent more time complaining about the amount of work he has than actually examining Lyle or talking to us. Today he was very pleasant. We had actually been discussing whether we should change doctors or not. I think we'll stick with him a bit longer. At one point he did say that he was feeling a bit guilty about not jumping all over Lyle's infection when I talked to him in the middle of the night a month and a half ago. Too right, mate. Don't let it happen again. As I pointed out though, after having the VP shunt for two months no one really expected an infection in Lyle's belly to seed an infection in his cerebrospinal fluid. The most likely diagnosis was that he had a minor bug. Particularly so since there were a lot of minor bug cases being seen in Dr M's practice at that time.
• We did discuss Lyle's eating habits. So far he is taking, on average, 14 ounces of fortified breast milk every day. This is with us sticking a bottle in his face whenever he makes the slightest fuss. This just isn't enough. He now weighs 11 lb. 7 oz (or about 5.2 kg). The nutritionist at LPCH felt that Lyle should be getting 100 calories/kg/day. This means that he should get 520 cal/day. Assuming that the fortified breast milk has about 25 cal/oz he needs to take about 21 oz/day. In other, words he needs 50% more food each day than he's getting. Dr M said that the amount he's taking will satisfy his basic metabolic needs: he will be adequately hydrated but he probably won't grow much, he will wet his diaper but he might not poop very much. To really thrive he needs to gain somewhere between 0.5 and 1 ounce per day. Paloma and I have talked about this a lot and we decided that we will try him without the NG tube at least until his next weigh-in (on Thursday the 5th). If, however, the amount that he eats each day drops then we will insert a new NG tube whether he likes it or not.
• The nurse giving the vaccinations is extremely efficient. She had three needles to give him. She drew them up and waited until Dr Moler had finished with us. Then she descended on Lyle. I put him down on the examination table. He was still smiling and happily gurgling at this point. Then, she struck. In less than two minutes she had given all three shots. It was amazing. Lyle started crying with the first. I picked him up when she was done and he calmed right down. At least it was over fast. Not like those grueling marathons when half a dozen nurses tried to insert IV catheters. Lyle just shrugged it off. He was fast asleep by the time I got him to the car. He slept all the way home and was fine for the rest of the day. Paloma gave him baby Tylenol a couple times and that seemed to be all he needed. What a guy! 

• Therese, our home nurse, visited again today. She thought our experiment of feeding Lyle by mouth only was a good one. On her scale Lyle weighed in at 11 lb. 6.5 oz. This is up two and a half ounces from last week (we ignore the 11 lb. 7 oz. reading from Monday since it was a different scale). That's a small increase but acceptable. Since Lyle is not losing weight Therese recommended that we continue the test. If he starts losing weight then he gets the NG tube back.

• Paloma has been keeping track of the volume that Lyle eats on a daily basis for the past ten days and the trend is a bit disturbing. On his best days he will take about 440 cc's which is about two-thirds of what he really needs to thrive. The last couple days he hasn't even managed 400 cc's. He looks great. He has a lot of energy. He still pees and poops although not as much of the latter as we are used to. We watch and worry. Whenever he's awake we stuff a bottle into his mouth but we can't make him drink. He takes as much as he wants and when he's done he lets us know (usually by pushing the bottle away). Therese is returning on Friday to weigh him again. We will continue the eating experiment until then. I have to admit, however, that part of me wants to put the NG tube back right now. Would it really be a big deal for Lyle to have an NG tube until he's ready for solid food? I don't think so. Not if that's what it takes to keep him healthy.

• We started fortifying Lyle's milk with rice cereal today. Not much, just one teaspoon with his bottles in the evening. It will give him a few more calories and might make up for the low volume he's been taking over the last few days. We're guessing that he's getting about 30 calories per ounce of milk now. That means that he really only needs to take 16 or 17 ounces of milk a day. Call it 500 cc's.
• The change seems to have helped. He took more than 450 cc's today for the first time in a long time. If he continues eating this well then we can forgo the NG tube. Hopefully forever.

• Lyle had his first appointment with the Packard Children's Hospital High Risk Infant Development Clinic today. They track premature babies and others that are at risk for developmental delays. In one intensive day you can see as many specialists as you need: occupational therapists, nutritionists, speech therapists, etc. Kim, our caseworker from the San Andreas Regional Center, was there too. Her job was to listen to the recommendations from the experts and then see that we get hooked up to the services locally that Lyle needs.
• Dr Magdy Ismail was the neonatologist checking Lyle out. Long time readers may remember him as the doctor at Dominican Hospital who took Lyle after he was born, stabilised him and then shipped him off to Packard Children's Hospital. All through Lyle's subsequent hospitalisation Dr I got reports on Lyle's progress. He's a very sweet man. Today was his first chance to look at Lyle "officially".
• Dr Ismail used a chart from the Denver Development Assessment (also known as the Denver-II). The chart covers development from birth to about six years. By drawing a line at the four and a half month line we can get an idea of what behaviours we can expect to see from Lyle. Here is an example of the chart which has been used to assess a twelve-month-old baby: http://cehs.cmsu.edu/webstUDENT/kjt34940/eport/Denver%20II.html.
• Dr Ismail was very excited by Lyle's performance. He did everything he was supposed to do. He tracked the ball of red yarn. He reached out for it and put it in his mouth. He usually turned his head in the right direction when a bell was rung behind his back (albeit with some hesitation). He took huge walking steps while Dr I held his arms and pulled him along. Despite all that Lyle has been through he seems to be right on track developmentally. The only slight negative was that his left ear seems less responsive than his right.
• Also of interest was Lyle's position on the developmental charts. We looked at three measures: weight, length and head circumference. When Lyle's weight was plotted against his adjusted age it was actually on the chart. Right at the bottom of the normal range for a baby of his age but this was the first time he'd even come near normal so we were pretty pleased. His length still isn't on the chart but Dr Ismail says it's just a matter of time. He has the genes to be tall. His head circumference was also on the chart but this might be due to the pressure from the fluid collecting in his skull before his shunt was installed. No big deal. His body will catch up soon enough.
• The only ambiguous data come when his hearing was tested. He turned to the right very consistently when a bell was rung on that side. The left side seemed less responsive. We already knew that he has hearing problems so this was not a great surprise. He has an appointment to see an ENT later this month. Eventually we will get some hard data to back up the anecdotal evidence collected so far. On the bright side, Dr Ismail said that even if Lyle only has 50% hearing (whatever that means) he will still develop normal speech. In the meantime the speech pathologist recommended that we start learning and using sign language. Visual communication to augment aural communication. Interestingly, they say you can (and maybe even "should") use sign language with all babies, even ones without hearing problems. In case you're interested, one of the best books on the subject is called Baby Signs by Linda Acredolo and Susan Goodwyn and it should be available at your favourite local bookstore).

• Lyle's Grandma V (my mom) arrived today. This is the first time she's had a chance to meet him (and vice versa). The original plan was that she was to spend some part of Christmas with us but that idea was dropped when Lyle wasn't released to home. Then in January, when Lyle came home and I was off work, she went to Mexico for a holiday with some friends. Now, finally, it's Lyle's turn. The plan is not to do much of anything special.

• We took Lyle to see Dr Spilman, a local ear-nose-throat specialist. Therese, Lyle's home care nurse, says that Dr S does deal with babies so we hope he will be able to give us some definitive answers on Lyle's situation. He managed to get a good look in Lyle's ears and said that there wasn't any obvious fluid behind his ears. Lyle was a bit uncooperative. He was just on the verge of falling asleep when Dr S came in and didn't take too kindly to having a cold otoscope shoved in his ear. Dr Spilman said that Lyle's crying as loud as he did was a good sign. Babies that have profound hearing loss tend to cry very quietly. The next step is to give Lyle a sound field test. This is where they put him in an isolation booth and then play sounds at him from different angles and see how he responds. That'll happen in a couple of weeks.

• Yesterday we told Therese how well Lyle was handling the rice cereal in his milk and she suggested adding it to all his bottles so starting today that's what we're doing. It'll give him a few more calories and may help him sleep through the night (our pediatrician is sceptical of this theory). The amount in each bottle is just enough to make the milk a bit thicker.

• This afternoon Lyle was evaluated by a Lisa, a physical therapist for the San Andreas Regional Center. It was pretty cool. She had a room full of toys and basically just wanted to watch him play with them. He did very well. She said he was right on track for his adjusted age. She was a little bit concerned about his eating habits but since we don't mind feeding him around the clock she wasn't going to recommend any interventions. What she would like to see, in a couple months, is that Lyle can take a full feeding in twenty minutes or less. She said it would be great for us if he only needed feeding once every three hours and if he could sleep through the night. A few physical therapy sessions may help with this. In the meantime she gave us lots of suggestions for stimulating him orally: wipe his mouth with a wet rag, do the wubba-wubba lip thing (you know what I mean - where you wiggle your finger on his lips while he's talking so as to make a "wubba" sound), anything to get him to focus on his mouth so that when the bottle goes in he doesn't just ignore it.
• It has been great for us to get such positive, objective feedback about Lyle's progress. We have had the sense that he is doing well but not having spent much time around other four and a half month old babies recently we're not really sure what he should be doing. We're just happy that he's such an easy, happy baby.

• Grandma V left this morning. We really didn't do much to entertain her while she was here. About the only tourist-like thing we did was a quick walk through the redwoods in Henry Cowell State Park last Sunday. Low key is our style.

• We made the trek back up to Palo Alto this morning for Lyle's neurosurgery check-up. Trish was really pleased to see him looking so good. He was on his best behaviour for her. She commented on how aware and alert he was. He looked her over with great interest. Since he continues to do so well it is now time to plan for the removal of his Hickmann catheter. The risks of keeping it in any longer (especially the risk of infection) now outweigh the benefits of having it in (easy access if antibiotics need to be administered). I can't say as I will be sorry to see it go. It is nice to know that I can do the maintenance tasks (daily flushing with heparin, weekly dressing changes) but I'll be just as happy not to.

• We returned to the Dr Spilman's office for Lyle's sound field test today. It was disappointingly unhelpful. For some reason we were only scheduled for a half hour appointment when, for a baby of Lyle's age, an hour would have been more appropriate. The thing is that when you are testing a baby's hearing you have to go from indirect cues to tell whether the sound is making it through or not: does he turn his head, does he hold his breath a little, does he stop sucking form the bottle, etc. We had barely got started when they told us that Lyle's time was up. I feel a bit bitter about the whole thing. They knew Lyle's age and history when we set up the appointment, why didn't they set aside enough time for him? We re-scheduled for the 7^th of May but we're starting to wonder if we shouldn't just get a referral to a pediatric ENT at Packard Children's Hospital. They are used to dealing with children like Lyle there.

• I guess we should just call it the Unfortunate Formula Incident.
• If you have spent any time with Lyle at all you will know that he is generally a very happy and content baby. Yes, he does cry every once in a while but usually there is a reason for his doing so: hungry, dirty diaper, tired. The list is a short one and once the problem has been corrected he quickly returns to his normal, happy self. The last couple days, however, have been just awful. Lyle cried almost non-stop. He was inconsolable. We're just not used to dealing with this kind of baby. Every time I called Paloma from work I could hear Lyle crying in the background. I could also hear the tension and frustration in Paloma's voice. None of the usual things would calm Lyle for more than half an hour or so.
• In my worry for my wife's sanity I headed home a bit early yesterday to help out and give her a break. As we sat and talked about the problem we noticed that Lyle seemed gassier than usual. It was like he needed to fart and yet it hurt him when he tried. We gave him some Mylicon drops (which supposedly help a baby pass gas more easily) and some Tylenol to ease the pain a bit. By pressing his legs up to his belly we could help him expel some of the excess gas in his belly. He seemed much happier. But what changed in his diet that could have given him this problem?
• Well, we have been supplementing his breast milk with both infant formula and rice cereal. We had been using Nutramigen for the last couple of months but we ran out a couple days ago and switched back to using Pregestimil. They are both from the same manufacturer and are both anti-allergenic but... When Lyle came home in January we were using Pregestimil in his milk and he had mild gas problems then. We went through a lot of Mylicon. When we switched to the Nutramigen that problem went away but we didn't really notice since that was when he got his shunt infection and had to return to Packard Children's Hospital. We had other things on our mind. Suddenly it was clear what had happened. The switch to Pregestimil was upsetting his stomach!
• The first thing we did on realising this was to dilute out the Pregestimil in what remained of the pre-mixed bottles. Then we went out and bought a new can of Nutramigen (it can be hard to find, it is also quite expensive at around US $22 per can). Sure enough once we got him back on the Nutramigen he quickly returned to his old, lovable self.
• I should take this opportunity to thank Dr Moler and Deborah, the Mead-Johnson distributor in Santa Cruz. Dr Moler mentioned Lyle's situation to Deborah and she very kindly placed us in a program which provides us with their product. In the first shipment (which came in January) we got a case of Pregestimil. Six cans. When Paloma talked with Deborah this morning and explained what was going on she agreed to get us some Nutramigen. She said we should take the remaining unopened cans of Pregestimil to Dr Moler's office so that he can distribute them as needed.
• The bad side-effect of all this drama is that Lyle's eating dropped off dramatically over the last couple of days. He has taken several ounces less per day than in the days before the formula change. Hopefully we can get him back on course now that we know what the problem is. We were left feeling quite guilty that we hadn't figured out the problem much sooner. 

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