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After defeating the dreaded Ventilator, and conquering the hearts of every nurse during his three weeks in the East Jefferson NICU, EthanMan knew he had to find a more suitable location for his permanent base of operations. He decided to estalish his Crib of Solitude at the home of his two faithful assistants, Sean and Janine George. From there he could easily maintain his alter-ego as their son while enlisting their help in his on-going battle against his insidious arch-enemy, the Trisomy 13 Syndicate.
Ethan was born at the East Jefferson General Hospital in Metairie, Louisiana. He weighed 6 pounds, 9.9 ounces, and measured 18 3/4 inches long. He was taken to the Neonatal Intensive Care Unit shortly after delivery, where he has been ever since. Dr. Ginsburg worked with Ethan for several hours, putting him on the breathing machine and other life support systems while he examined him from head to toe. Dr. Ginsburg came back to us later that evening and described Ethan's situation in as much detail as he could at that point, indicating that the caause was probably Trisomy 13. Hopefully by now you have looked over the information about Trisomy 13, so you will be prepared for Ethan's specific external symptoms:
With Janine continuing to recover well, we awaited more information about our baby boy. We got to see him in the morning after we woke up, and were able to hold him for the first time that afternoon, albeit with considerable care being taken not to disturb his breathing or feeding tubes. Throughout the day the nurses and technicians ran ultrasounds on his abdominal area and his lower head, and did an echocardiogram as well. We took the first pictures of Ethan when we went in to see him before bedtime tonight.
We got to see Ethan several times again today, but were not able to hold him because of the attending nurse's fear of his tubes being displaced. During our morning visit Ethan got to meet both of his grandmothers (Mamaw and Grandma) for the first time, and we took more pictures with each of them. The nurses were able to give us the results of the previous day's tests, most of which indicated that the internal organs have some malformations but are functioning reasonably well so far. The most worrisome problem found in the heart was an incomplete closure of the patent ductus arteriosus, which connects the aorta and the pulmonary arteries to by pass the lungs while babies are inside their mothers. This connection is necessary since the mother is providing the oxygen during fetal development, but must separate entirely after birth to insure proper blood flow through the lungs. The incomplete closure of Ethan's ductus sometimes results in poor oxygenation of the blood because some of it still bypasses the lungs, and at other times allows too much backflow of blood into the lungs, thus overloading them. We will have to see how this develops.
The genetic analysis came back, confirming that Ethan does indeed have full Trisomy 13. He continues to make progress however, with the nurses stepping down his respirator again, to 15 breaths per minute. Additionally the nurses gave him his last dosage of Morphine at 8:00 AM, and he is starting to move and respond to stimulation a little more actively. Ethan got to meet his Cousin Stan and Uncle Richard for the first time, and made short work of wrapping Richard around his little finger. We were happy to see that Ethan's nurse for today had bathed him, and dressed him in a little shirt, hat, and booties, so we brought back some of his own clothes later that evening. We also got to hold him again in the afternoon, which of course, was bliss all over again.
Ethan still hasn't needed any Morphine since yesterday morning, and he keeps getting more responsive. We noticed that he is moving his mouth a lot more now, yawning, sticking out his tongue, and rooting in response to us stroking his cheek. After we got to hold him in the morning, the nurse noticed that she needed to change his diaper because he had his First Poop. Fortunately for all of you reading this, we had forgotten the camera this morning, or Janine would have surely taken a picture of it and had me put it on the website. The other good news for today was that they plan to try taking Ethan off the ventilator Saturday morning, to see if he can breathe on his own.
Well the doctor did not take Ethan off of the ventilator today, but it was mainly a result of missed connections between the doctor and us rather than Ethan's readiness (apparently Dr. Ginsburg usually comes in around the crack of dawn and we didn't get there before he left). We made it clear today that whether we can be there at the same time or not, we want the doctor to try to remove the ventilator tomorrow. On a brighter note, since Ethan no longer needs the Morphine, he continues to get more responsive and exhibit some of the natural baby activities like rooting, etc. Today he started sucking on his pacifier for a few minutes at a time while we were holding him this morning. The nurses said that they had to change his diaper again today, so his bowels seem to be working fine. The other highlight of Ethan's day was getting to meet his "Uncle" Tim and Auntie Sandy (for those of you who don't know them, Tim is a dear friend of Sean's from childhood, and Sandy is his mother).
As you all know they were supposed to disconnect the ventilator this morning. Well, we got a call from the hospital around 7:30 AM saying that Ethan wanted to talk to us, and when they put the phone near him the boy was screaming his fool head off. It was so nice to hear him cry for the first time, and indeed he has been breathing well on his own all day. Now that the breathing tube is gone we took another good round of photos, which we will post as soon as they are developed tomorrow, and holding him is so much nicer without having to worry about dislodging the tube. Another advantage of the tube being gone is that he can really go to town on the pacifier, and he is quick to let everyone know when he wants it. Since he doesn't have much of an upper lip or roof to his mouth, he has a little trouble keeping the pacifier in sometimes, but we noticed over the course of our several visits today that he figured out how to hold it in place with his own hand. The bottom end is still working well too, with three or four healthy poops today, and the nurse let Janine change his diaper shortly before we left tonight. We have been telling Ethan all about everyone who loves him and is praying for him, and he wanted us to tell you all that in return for your love and support, he will grant you the privilege of visiting him when he comes home. So when that happens, we'll let everyone know.
In contrast to all of the uplifting news yesterday, today seemed long and difficult. For starters we had to get a few things done around the house that had been neglected for the past week, so weren't able to spend as much time with Ethan as we really wanted to (paying middle-of-the-month bills can only be ignored for so long). When we did finally get to the hospital to see the little man, he was irritable and inconsolable. The nurse said she had even given him a mild sedative to try and calm him down, but to no avail. Not long after we had gotten there they took Ethan down to another department for a couple of tests that they had planned, so we had to leave him sooner than we wanted. Dr. McGettigan called when we were eating lunch to tell us what came of the tests. Unfortunately one test that they ran confirmed that Ethan has a problem with urinary reflux (backing up) above his bladder. The good news was that the second test went well, showing that his upper GI anatomy seems pretty normal and he can swallow fairly well. The other good news is that, although they had to run another small tube down his throat, they are now feeding him Janine's milk into his stomach and he seems to be taking it well. All in all, it wasn't a bad day, just difficult because he was so upset during the times we were there. Hopefully the milk will work some natural magic, and Ethan will be stronger and more agreeable tomorrow.
Yes, today was a better day. Ethan was fussy at times, but was also responsive to our soothing, and rested well most of the day. As for actual news, there is a fair amount. The nurses and doctors have noticed, since they have been giving him the breast milk, that Ethan has a problem with stomach reflux coming back up his esophagus. While this would just mean "heartburn" to most of us, Ethan's cleft palate makes this a more dangerous issue, since anything that comes far enough up his esophagus could easily get down his windpipe and into his lungs. We noticed along with the nurses that Ethan's breathing today seemed more labored, and we could hear the rattle of the gunk blocking his airway, which led to the nurse having to suction it out of the back of his throat with a tube (you can imagine how much he enjoyed that). A chest x-ray confirmed that there was indeed some material getting into his lungs. So tomorrow morning Ethan will have his first (but probably not his last) corrective surgery, in which Dr. Adolph will perform a fundoplication and put in a gastrostomy tube. The fundoplication means that they will wrap the top part of Ethan's stomach around the end of the esophagus, where the two connect, which should correct the problem with the reflux (see the diagram). The gastrostomy tube is basically a stomach plug that will allow Ethan to be fed directly into his stomach, bypassing his mouth and esophagus altogether, which eliminates the danger of anything going down his windpipe during feeding (see the other diagram). While Janine and I are naturally concerned about Ethan having surgery, we both see this as a positive step toward him being able to come home, and both procedures are fairly "routine" surgeries that many other people have experienced. All that being said, although we hope none of you are up as early as we will be tomorrow, we would obviously appreciate any and all specific prayers tomorrow morning during the surgery. Ethan is first on the schedule, at 7:30 AM, and the surgery should last about an hour and a half.
I know everyone is wondering how Ethan's surgery went this morning, so I'll get right to the point. The procedures went well, Ethan didn't lose any appreciable amount of blood, and he seems to be recovering well. We got up obscenely early in order to get there at 5:45 and spend some time with Ethan before they started preparing him for surgery around 6:45. It was difficult to see him immediately before and afterwards, with his little body all exposed and the breathing tube back in place, but they will probably be able to take him back off the ventilator again tomorrow. The rest of the day was pretty uneventful, since it took Ethan a while to come off of the anesthesia completely, and then he needed some more morphine to ease his discomfort after the surgery.
Happy Thanksgiving!!!
I hope everyone else had a good one, because Janine and I have certainly never been more thankful on Turkey Day as we are this year. We started the morning with a visit to the Ethan man, and spent some time with him before going to Baton Rouge for the big family event. He was resting well, and had been stepped down on the ventilator again. The nurse said she had given him a little more Morphine at 5:30 AM, but since he didn't seem too uncomfortable, the plan was to start spacing his doses out a little farther apart. When we got back from Baton Rouge, around 5:30 in the afternoon, they said they still had not given him any because he didn't seem to need it. As a result he was awake and fairly active for most of the time we were there this evening, and we had another first. Prior to the surgery he had been lifting his head some, seeming to "look around" even though his eyes were closed, and even raising his brow occasionally in response to our voices and touches. Tonight he actually got one of his eyes to open slightly. Although it was very tiny, we could see his little iris and pupil and he seemed to be looking around. He was not fussy much at all tonight, except for being annoyed by the ventilator tube still taped in place, and trying to get his fingers into his mouth. The nurses seemed confident that Dr. Ginsburg will remove the tube again tomorrow morning, and said that they will probably start feeding him some milk again tomorrow, through his new stomach tube. As I said at the top, Janine and I could scarcely be more thankful than we are tonight.
Ethan came off the ventilator again today, and started feedings through his G-tube. They were giving him 2 mL of Janine's milk per hour today, and plan to step up the volume tomorrow. He was alert and full of personality again too, now that he's off the Morphine again. That is of course until we held him, at which point he promptly went to sleep. Even when he's sleeping though, he stretches, squirms, yawns, and makes the cutest faces possible. Then when we put him back in his "crib" he gets quite perturbed and lets us all know it. We are certainly looking forward to bringing him home so that we don't have to be away from him so much. Hopefully it will be fairly soon.
We had another good day with Ethan today, with the main news being his feedings. The nurses had increased the volume to 10 mL of milk per hour when we left this evening, and said that they would be stepping it up one more time tonight. Ethan also got to meet his Papa Jim (Sean's father) for the first time this afternoon. We are looking forward to talking to Dr. McGettigan this week to see what other issues are involved in getting the little man home.
Between church and going to lunch with my parents, Janine and I were starting to suffer withdrawal symptoms by the time we got to see the Ethan man this afternoon. The good news for today is that the nurses have increased the volume of Ethan's feedings to 19 mL per hour, which is the full amount he should be getting. As a result, they removed the I-V that has been running into his umbilical stump since the night of his birth. So now the only things connected to him are the G-tube in his tummy and the monitor leads which track his breathing, heart rate, and blood saturation. Hopefully there won't be much else to stand in the way of him coming home. Ethan also opened his eyes (actually only his right one) a little wider this afternoon. We got to speak with Dr. Ortenburg (sp?), the urologist, around 4:30 and he explained in some detail the three problems that he had found during his tests last week. To make a long story short it seems that one of Ethan's testicles is either undeveloped or has not descended, his penis is still retracted pretty far up into his pelvic area, and he has the problem with urine reflux because his ureters connect to his bladder in such a way that they do not close off properly as the bladder fills with urine. Fortunately none of these issues are life threatening, and some of them may correct themselves over the next few months, but we will have to keep a close watch on the situation. I will try to do more diagrams to explain these issue more clearly.
More good news! Ethan is now in a regular "open crib," whereas before he was in a special crib that had a built in heater, and could be outfitted to accommodate all sort of monitors, etc. The nurses have also shifted Ethan's feedings to a new pattern, increasing the interval between feedings as well as the volume. Previously he was getting a continuous input of up to 19 mL per hour. When we left tonight they were giving him 40 mL at each feeding (slowly pumped in through his G-tube over the space of an hour), on a 2 hour interval. The better news is that we spoke to Dr. Ginsburg this morning, and he said that as soon as Ethan's feeding rate gets up over 60 mL, on at least a 3 hour interval, he would be ready to come home. He said it could be as early as the end of this week, or possibly the beginning of next week, depending on Ethan's adaptability to the feeding schedule. Janine and I will have to spend one or two nights a the hospital so they can train us on his special care needs, and supervise us taking care of the little man on our own. Can you see us jumping for joy through your computer monitor? Thanks to everyone for all the prayers so far, and please keep them coming (especially after he comes home). While you are at it, you might want to say a few for the other babies in the NICU. Although Ethan will probably coming home after a three week stay, some of them stay in there for months, or never make it out. We are truly blessed.
We were a little frustrated this morning because we didn't get to see the little man much before we were kicked out so that one of the doctors could make their rounds. When we went back this evening though, Ethan was up to 60 mL on his feeding volume, on an interval of 3 hours. Yes you remember correctly from yesterday's update, that this is the minimum criteria that Dr. Ginsburg had mentioned for Ethan to be able to come home. Additionally the nurse tried the 5:00 feeding without the pump, simply letting the milk flow into Ethan's tummy by gravity as we held the container slightly higher than his stomach level. Tomorrow we will try to talk to Dr. Ginsburg about getting Ethan's discharge procedures underway, and making plans for us to "room in." Before going home they will do a routine hearing assessment, which they do for all babies, and make arrangements for any equipment that we will need to bring home with him. We also plan to talk to Dr. Adolph (who did his tummy surgery), to see how soon he anticipates changing Ethan's Gastrostomy tube to the button type. So it looks like Ethan may be home by the end of the week. On top of all that, Ethan actually stayed awake for the first 20-30 minutes of our visit, keeping his eye open and "looking" back and forth between us as we played with his hands, kissed his face, and so on. It was the first time we have held him that he has remained alert instead of going immediately to sleep. Of course after his 5:00 feeding he went out like a light, but hey, what do you expect from two-week-old with a full tummy? Hopefully tomorrow we'll get a definite timeline on Ethan's homecoming.
Well we did not get to talk directly to Dr. Ginsburg today, so we don't have a definite day for Ethan to come home yet, but he did tell the nurses that it would be "the end of the week." We did get our infant CPR class this afternoon, which is mandatory for all NICU parents before their babies are discharged. The nurses are also getting us more directly involved now with Ethan's care. Instead of them just doing everything, they are either explaining how to do it as they go along, or having us do it ourselves while they give us directions. We had already been changing some diapers, but today the nurse showed us how to suction out the secretions that build up in Ethan's throat, and gave us some other information in addition to the CPR class. The little man also stayed awake with us again for a little while just before his 2:30 and 5:30 feedings. Although we'd like to believe that he enjoys our company, we're realistic enough to know he's just being nice so we'll fill his tummy.
Tonight's update is fairly long because we had a very mercurial day. When we arrived this afternoon, the nurses told us that they were hoping to have us "room in" starting tonight, but there was not an adequate room available. So the plan is for us to stay Friday and probably Saturday night, and bring him home Sunday. This means that I probably won't be able to post updates to this site until we get back.
We got some more lessons today, on how to clean around the base of his G-tube, and how to check for residual stomach matter before each feeding. We also got to bathe him tonight, which Ethan didn't enjoy nearly as much as we did. This afternoon around 2:00 however, we got one of the most vivid lessons imaginable as we prepare to bring him home.
We were there this afternoon, talking about rooming in tomorrow night and bringing him home this weekend. As we were getting ready to change his diaper, we noticed that he had been unusually still and quiet for several moments, and when we looked at him we realized that he was starting to discolor. He had stopped breathing.
We immediately called the nurses, and they tried to give him a few breaths with a bulb-breather, but his chest was not rising and falling with the puffs they were giving him. So they asked us to wait in a small side room while they did some serious suction, and gave him some oxygen. Just before the nurse practitioner was considering trying to put the ventilator tube back in, he started breathing again.
Start to finish, the whole incident probably lasted about 3-4 minutes. His heart never stopped beating, but it did slow considerably after he was without oxygen for a little while. The nurse practitioner said that apparently some of his secretions must have pooled in a particularly bad spot, and blocked his airway. We know that the nurses suction him him pretty regularly, and it is something they have already been training us to do, so there is no way to determine or prevent the possibility of another similar problem. It is the kind of thing that Dr. Ginsburg has warned us about, and we have told ourselves could happen, but this afternoon was probably the clearest reminder that we could lose him at any moment.
Despite his afternoon episode Ethan is just as stable now as he was before, which really means that "stable" is a relative term with his condition. I debated whether or not to give so much detail in this update, but decided to include it so that no one will be unaware in the event that such a thing happens at home. The timing actually was quite instrumental, letting us know what we could potentially face. We are still planning to "room in" at the hospital tomorrow night (Friday) and possibly Saturday night too, so don't be surprised if there are no updates. By then however, I should be able to announce his homecoming. Thanks again for all the love, prayers, and support.
After rooming-in and the hosptial Friday and Saturday, December 3-4, we brought Ethan home on Monday the 6th. We were prepared to bring him home on Sunday the 5th, but there was a mix-up with his suction equipment. On Monday morning we switched from the home health company and equipment supplier that the case-worker had originally recommended, to Hospice of Louisiana. By 2:00 that afternoon we had the right machine, and we were doing the paperwork for Ethan's discharge. We got home around 5:00 PM Monday evening.
The rooming-in went well in terms of our ability to perform the necesary functions for Ethan's care, but the weekend was not without difficulty. On the Friday afternoon, not long afer we arrived, Ethan had another one of his obstructive apnea spells (i.e., he stopped breathing because of blockage in his airway). We recognized it sooner this time and he caught his breath again more quickly, with the nurses' help, but it was still a traumatic way to start the homecoming process.
Since we have been home this past week there has been a lot of news to report, but not a lot of time to report it. Ethan's feedings come every three hours, so our sleep patterns are definitely suffering. Between suctioning the little man's throat, preparing his milk, and waiting for him to consume it all, we are generally up for 30-45 minutes at each feeding. Add to that the occasions when we have to get up to suction him in between feedings, which is usually once or twice per night, and we end up sleeping in 1-2 hour snatches at best.
Ethan made his first visit to the pediatrician (Dr. Babin) on Wednesday the 8th. He measured 19.5 inches long, a gain of .75 inches since birth, and weighed in at 6 pounds and 5 ounces which is an increase of 3 ounces over his last hospital weight on Sunday. We also visited the urologist, Dr. Ortenberg, again on Thursday the 9th after noticing that Ethan was developing a little hernia on the left side of his pelvic area. Dr. Ortenberg said that it was an indirect result of Ethan's second testicle beginning to descend, because part of his small intestine was caught in the opening that the testicle was coming through. Obviously the testicle descending is good news, but we will have to watch to make sure that the hernia does not get inflamed.
Between the two doctor visits and his ride home from the hospital, we are learning that Ethan does very well in his car-seat, sleeping pretty soundly most of the ride. He had his first bath at home, complete with shampoo for his curls, on Tuesday the 7th. Unfortunately Ethan did not enjoy the bath nearly as much as his mom did, but we figure he liked the drying-off part pretty well, since he stopped screaming when we started rubbing him with the towel. He is still staying awake for a few hours each day, and seems to enjoy us walking him around the house and letting him "look" at different things during these waking times. Ethan has also enjoyed several visits this week, from Pastor Tom Logan, the Hospice nurses, the ChildNet workers, his Mamaw and Papa Jim, and his "Aunt" Dette from California. If anyone wants to come over, please feel free to give us a call at home.
On the serious side Ethan, Janine and I have all survived three more of the little man's apnea episodes, in the evening on Tuesday the 7th, mid-morning on Thursday the 9th, and in the wee hours of Sunday the 12th. Like all heros, EthanMan does have a major weakness that could be his undoing-- his temper. When he gets himself worked up he is prone to hyper-extending his neck, which seems to completely block his already mucus-laden windpipe. Everyone concerned needs to understand that at this point it, these spells are the biggest threat to Ethan's survival. They happen spontaneously, and it may just be a matter of time until one of them is so severe that Janine and I are unable to help Ethan catch his breath again. We don't want anyone to be caught off-guard if that happens.
Another busy week, and another late update--sorry for the delay. I (Sean) started going back to work on Monday, leaving Janine and Ethan at home. Tuesday afternoon however, all that changed quickly. I came home around 1:30 for my lunch break and walked in on Ethan having one of his apnea spells, with Janine and my Mom trying frantically to revive him. He did eventually come around but it was the second spell he had had that day, making a total of eight. Janine and I knew that it was time to make some serious decisions.
We decided that we were fighting so hard to resuscitate him more for our own interests rather than his. We realized that at some point Ethan would have an apnea episode while we were both away (at work, etc.), and even though his sitter would most likely be a nurse, the time would inevitably come when no one would be able to revive him. We were certain that we wanted to be present to hold Ethan when the time came for him to go, so we decided not to intervene again during his apnea spells. Based on our assumption that we were now on a short term time frame, I decided that I would not be going back to work until Ethan was gone, or the beginning of the year, whichever came first.
With all of these things in mind we had Ethan baptised Tuesday afternoon, rather than waiting until the 26th as we had originally planned. Given the circumstances of the afternoon, and the implications of our decisions, the baptism was a bittersweet occasion, but we were glad for the few people that showed up on such short notice. That night, shortly before midnight, Ethan had what Janine and I both expected to be his final apnea episode. Instead of scrambling to suction him, we picked him up and held him between us, stroking his cheek and telling him how much we loved him. After being out for a few minutes, he made a couple of spasmodic movements that we assumed were death spasms, including a strong exhale. A few seconds later he inhaled spasmodically, and again a few seconds after that, and then we realized that he was breathing again on his own. Needless to say, Janine and I were both astonished, as Ethan's breathing evened out.
Over the rest of the week, Ethan worked up to 4-5 apnea spells per day, with each lasting 3-5 minutes. He recovered from all of them without any assistance from us, but they do seem to be increasing in frequency and duration. The Medical/Developmental Profile has a table of each day's episodes, if anyone is interested.
Thursday the 16th was a busy day. Ethan made his second weekly pediatrician's visit in the morning, where we told Dr. Babin about Tuesday's events and our subsequent decisions. He supported our decision, and agreed that the apnea spells would probably get more frequent and longer lasting, and that it was just a matter of time until the final one. On the upside, Ethan weighed in at 7 pounds even, making for a gain of 11 ounces in 8 days. Dr. Babin also supported our decision to increase Ethan's feedings to 3 ounces on a 4 hour interval, as Ethan continued getting hungry earlier.
Thursday afternoon Ethan made his first non-doctor-visit trip out of the house, going with us to the airport to meet his brother and sister for the first time. Trevor and Emma arrived in one piece, albeit noticeably bigger, and Ethan seemed to enjoy the trip, sleeping peacefully the whole time. Trevor and Emma both fell in love with their new brother immediately, and were visibly shaken when we explained the recent events and decisions regarding Ethan's apnea. Considering that they were now face to face with their brother and his condition, as opposed to only hearing and reading about it from a distance, Trevor and Emma both dealt with it remarkably well.
After the successful airport trip, we decided that travelling in general was no problem for the little man. So, with suction pump in place on his stroller, Ethan joined us for some shopping trips to Sam's on Friday, Wal-Mart on Saturday, and attended church with us Sunday morning. At Sam's we had our first away-from-home apnea episode, which came and went no differently than it would have at home. At Wal-Mart we had our first experience with explaining Ethan's condition to a curious stranger, an oddly significant event that I had not really anticipated. And of course after the worship service Sunday morning we had our own receiving line, as that part of Ethan's extended "family" lined up to meet the hero for whom they had been praying over the past month.
The only other news from the week was in connection to our sleeping pattern, or lack thereof. Even though we had increased Ethan's feeding interval to four hours, we were still not getting more than an hour of sleep at a time because Ethan was waking up crying several times in between each feeding. Finally we had a brainstorm that since Ethan had spent the first several weeks of his life in ICU, where the lights were always on, perhaps he was waking up momentarily in the night and freaking out when he opened his eyes to a totally dark room. Sure enough, when we started leaving a light on, Ethan started sleeping straight through between his feedings. Well, most of the time at least.
Now that Trevor and Emma are here, the computer is on a time-sharing schedule, which is my excuse for this update being two days late. Now that things have settled into a decent routine, I will try to post new information in a more timely fashion (i.e., at least weekly). Thanks again for all the love, support, and prayers. Happy Holidays-- whichever one(s) you celebrate --from EthanMan and our whole family.
Lots of new experiences and holiday fun this week for the EthanMan. He met most of the staff and administration of the St. Charles Parish Library, where his dad works, visiting the West Regional branch on Monday the 20th and the East Regional branch on Tuesday the 21st. That night the whole family went to eat sushi, marking Ethan's first restaurant outing. On Wednesday the 22nd Ethan went with us to the airport again, this time to meet his Grandma & Papa Favrat who flew in from Nevada for the holidays. His Grandma noticed right away how much Ethan had grown, and his Papa met him for the first time.
Christmas Eve and Christmas went fairly well, with only minor difficulties. Ethan went with us to the Christmas Eve church service on Friday the 24th, but he was not as agreeable as he had been at the previous Sunday worship service, so Janine and I took turns sitting with him in the narthex. After church we all exchanged our gifts to each other, a long standing tradition in Janine's family, and Ethan got his fair share of the haul. Christmas morning we all got up to see what Santa left us, then we got ready and drove up to Baton Rouge to celebrate the big day with Ethan's Mamaw and Papa Jim George and Uncle Richard and Aunt Sandra. Although Ethan had several apnea spells throughout the day, including one each on the way up and back, everyone enjoyed the day. Ethan got to meet new family and friends, with visits from his Aunts Karen and Lisa, Aunt Mary and Uncle Beverly, and another visit from his Uncle Tim. We finished off the week with Ethan's first hockey game, the New Orleans Brass against the Mobile Mysticks at the new arena downtown. The home team lost but Ethan did get a picture with Scratchmo, the Brass mascot, which we will post as soon as it gets developed.
In addition to all the holiday excitement, we also had some general news. We increased Ethan's feeding volume again because he started getting hungry early. We thought we would try adding a little rice cereal to increase the bulk, but Ethan had some bad gas problems on Christmas Eve that we thought might be related. So instead we just increased his formula volume up to 3.5 oz. in order to stay on the four hour interval. We have also had some more sleepless nights for some reason that we can't really figure out. Dr. Babin's office had suggested alternating doses of Tylenol & PediaCare added to his night feedings, which seemed to work at first, but he is still getting agitated some nights. We didn't make it to church on the 26th because we hadn't gotten any sleep to speak of the night before. Of course we still have the apnea spells, which are detailed on the Medical/Developmental Profile page.
Monday and Tuesday, the 27th & 28th, were fairly quiet days spent at home. Wednesday the 29th however proved to be quite the opposite. Ethan said good-bye to Emma around 6:30 in the morning, before she left to go back to California. The rest of the morning, and throughout the day, Ethan had to compete with his older brother for his spot at the center of attention as Trevor generated some excitement of his own (which we won't go into here).
Not to be outdone, Ethan decided his regularly scheduled doctor visit for that afternoon was not enough. We had been having progressive trouble with leakage around the base of his G-tube for the past couple of days, so we called Dr. Adolph for an appointment to have Ethan's original tube replaced with a "button." Of course Dr. Adolph was up to his ears in scheduled surgeries at Ochsner all day, but he managed to squeeze us in. Janine and I certainly could have done without watching Dr. Adolph "yank" the old tube out and "pop" the button in, but after it was all over it was nice to have just a little cap over that space instead of a hose hanging off of his tummy.
We went from Ochsner to see Dr. Babin for Ethan's regularly scheduled six-week pediatrician visit. He was still none too happy about his G-tube being switched out, so you can imagine how much he enjoyed being stripped down and put on the cold hard scale and measuring board. After six weeks he weighed in a whole pound over his birth weight at seven pounds, nine ounces, and measured 20 1/4 inches long. Amazingly, with all the screaming Ethan did between both of his doctor visits, at the end of the day we realized that he had had no apnea spells all day long-- the first day since he started having them in the hospital.
Thursday night Ethan made his first trip to everyone's favorite restaurant, Pancho's, with his Mom & Dad, Grandma & Papa, Mamaw & Papa Jim, and Trevor. Friday brought New Year's Eve and a visit from Ethan's Aunt Cynthia, Dana & David. We all rang in the new year with a pay-per-view O(+> concert, fireworks in the front yard and, of course, champagne at midnight (Moet & Chandon, thanks to Cynthia). Ethan toasted us with the syringe from his midnight feeding. On Saturday, the first day of the last year of the second millenium, Ethan finally said good-bye to his brother, as Trevor prepared to return to California. Ethan went to church again with us on Sunday the 2nd, joining us for the first Communion of the year 2000 and for his official recognition by Brother Tom, a slightly delayed follow-up on his baptism. Later that afternoon he cruised the French Quarter with parents and both sets of grandparents, and capped off the day with dinner at Mike Anderson's in Metairie.
Over the course of the week, we increased Ethan's feeding volume to 4.5 ounces, had the aforementioned trouble with his G-tube leaking, and suffered through more sleepless nights, which may have been due to nothing more than "normal" colic.
Ethan had a particularly bad day Monday the 3rd, fussing and crying continuously throughout the whole day and night. On the morning of Tuesday the 4th, after we took his grandparents to the airport for them to fly back home to Nevada, we made a doctor's appointment for later that morning. We discovered that Ethan had good cause to be so upset the previous day, because he had an infection in both ears. The doctors prescribed Augmentin to treat the infection, and Tylenol with Codeine to ease Ethan's pain.
We began giving Ethan the medications with his noon feeding. The good news is that the medicine did ease his pain and he rested well all afternoon, free of the discomfort that had plagued him before. Unfortunately the Codeine also depressed his respiratory system, and although he had not had any apnea spells Sunday or Monday, he had 14 between 1:00 and 10:00 PM. Nevertheless we had a pleasant evening, just the three of us eating dinner and watching television. His fifteenth apnea episode began at 10:11 PM. He began to recover from it at 10:15, taking a few breaths, but stopped again and never recovered. We realized that he was not going to recover after 10 minutes of him not breathing, but waited until 10:45 to call our Hospice nurse.
We have arranged for the following schedule of services for family and friends:
| Service | Day | Time | Place |
| Wake/Visitation | Thursday, January 6, 2000 |
6:00 PM to 9:00 PM (CST) |
St. Charles United Methodist Church 1905 Ormond Boulevard Destrehan, Louisiana 504-764-8292 |
| Wake/Visitation | Friday, January 7, 2000 |
10:00 AM to 11:00 AM (CST) |
St. Charles United Methodist Church 1905 Ormond Boulevard Destrehan, Louisiana 504-764-8292 |
| Funeral Service | Friday, January 7, 2000 |
11:00 AM (CST) |
St. Charles United Methodist Church 1905 Ormond Boulevard Destrehan, Louisiana 504-764-8292 |
| Burial | Friday, January 7, 2000 |
following Funeral Service |
Green Oaks Memorial Park 9595 Florida Boulevard Baton Rouge, Louisiana 225-925-5331 |
| Memorial Service | Friday, January 7, 2000 |
11:00 AM (PST) |
Almaden Hills United Methodist Church 1200 Blossom Hill Road San Jose, California 408-269-2345 |
