go? So far we are still on time for a Monday departure for Griffith. As long as he continues to behave, he should get his walking papers. He's been off of his oxygen for about a week and so we are in the very fortunate position of going home without oxygen and without a monitor. Griffith will be fully mobile so long as someone is around to tote him. To that end, I am going to Babies R Us this weekend to pick out a harness/sling/kangaroo thing-a-ma-bob so that I can 1) satisfy his desire to be held and to be in the middle of things and 2) actually get some stuff done. And I am not making it up about how demanding the little turkey is. This morning Cheryl was feeding another baby and Griffith got all riled up (an hour before his breakfast was due) and was squawling and became increasingly outraged until she got someone to go and make sure that he wasn't dirty or something. As soon as the nurse picked him up, he stopped crying. She said he was going to have to learn to take turns. He has - he takes his turn first.
Sweet Allan, on the other hand, is the world's most contented child. He watches his mobile, listens to his tape, checks himself out in the mirror and eats, poops and pees. Occasionally he naps. He likes to be held and is very cuddly but he isn't prepared to expend a lot of energy in to getting you over there to pick him up. Today they went back to alternating between the nasal cannula and the c-pap -- 6 hours on one and then the other. Since he was on the nasal cannula at lunch today, he was able to bottle-feed and he sucked the whole thing down in record time.
I will try to take some updated photos of the boys together. It is a shame that they just now got to cobed and Griffith is going to take off, but at least they will be familiar with the process when Allan comes home.
Friday, August 04, 2006
Thursday, August 03, 2006
Homeward bound?
Well, we may have someone coming home on Monday. If we can get a few issues sorted out, Griffith may get to come home very soon. We aren't telling him since the last time we did, he misbehaved and required surgery. And there are any number of reasons why it might be delayed. For example, we still have to figure out why his poop is a very unusual shade of green (jade?) and make sure that he isn't going to overload on fluids since they've stopped his diuretic. And who knows what else he might come up with between now and then. All that having been said, it is looking like Monday. And not a moment too soon.
Allan is doing very well, too, but it will be several more weeks before he may be ready to come home. Despite the fact that he is by far larger than his brother (7 pounds 4 ounces v. 4 poiunds 13 ounces). he just has weaker lungs , was far sicker and is going to take longer to get home. We really hate it, but hope that it will only be for a short time. By the time he gets home we will have already figured out what we did wrong with Griffith and will have to find new ways to do it wrong with Allan.
Allan is doing very well, too, but it will be several more weeks before he may be ready to come home. Despite the fact that he is by far larger than his brother (7 pounds 4 ounces v. 4 poiunds 13 ounces). he just has weaker lungs , was far sicker and is going to take longer to get home. We really hate it, but hope that it will only be for a short time. By the time he gets home we will have already figured out what we did wrong with Griffith and will have to find new ways to do it wrong with Allan.
Wednesday, August 02, 2006
Wednesday August 2nd
My youngest son is spoiled beyond measure. I got to the NICU for lunch at 11:30. "Care time" is supposed to be at noon. Alissa was standing in the doorway of Nursery 9 holding Griffith who was ready to eat and had been making that quite clear for some time. She was trying to hold him off until I got there, but it was taking all that she had. After lunch, I put the boys in bed together and tried to get Allan to turn his head to look at his brother. Not only did he refuse to do it for me, but he kept his head turned all afternoon, preferring instead to look at himself in the mirror. Vanity, thy name is Allan. At least he and Griffith have that in common. They both like to look at themselves. Allan has now put on so much weight (he is over 7 pounds) that he has actually outgrown his preemie clothes. Griffith is already wearing his hand-me-downs. That will no doubt be cause for counseling later.
Tuesday, August 01, 2006
Tuesday night
Allan seems to have settled down with the C-pap. He will wave at it with his little hand and whine a bit every now and again, but he seems to have decided that it really just isn't worth fighting.
Griffith was very nearly worn out when we got there. He reportedly spent all afternoon awake and a fair portion of that being held by Alissa. When Alissa went on break, Alice took over the honors of holding Griffith and they got along fabulously. She joked to one of the other nurses that he must like big-breasted women at which point he broke in to a big grin. Yeah, it is funny when he's this size, but it won't be nearly so funny when he's 35.
Griffith was very nearly worn out when we got there. He reportedly spent all afternoon awake and a fair portion of that being held by Alissa. When Alissa went on break, Alice took over the honors of holding Griffith and they got along fabulously. She joked to one of the other nurses that he must like big-breasted women at which point he broke in to a big grin. Yeah, it is funny when he's this size, but it won't be nearly so funny when he's 35.
One step forward, two steps back.... 8.01.06
A mixed bag today...Allan has gone back on the C-pap. Nothing catastrophic has happened. He's fine. With the start of the month, we change attendings and this one wants to try a different approach with him. He has been having quite a lot of trouble lately with fluid retention and needing higher percentages of oxygen. Poor little fellow is just having trouble making progress. So -- back on the C-pap which gives him a little more support so that he doesn't have to work so hard to breathe. He'll get a little rest, build up some reserves and maybe give the doctors a chance to figure out his fluid situation. Or just give him a little more time to mature. He doesn't like it much, but he doesn't fight it like Griffith did. With a little luck, this will only be for a short time and then we'll pick up some forward momentum.
Griffith's day got off to a rousing start. Apparently the physical therapist came to do his behavioral assessment this morning. She woke him up, poked and prodded him and then observed that he became quite tense. And that the more you poke at and/or fool with him, the angrier and more tense he becomes. (Yes, well, the apple didn't fall far on that one. How 'bout we just don't pester him?) Oh, and he's going to have to learn how to relax more and there are some exercises we can do for that. (Mother/baby yoga?) Anyway, despite his elevated level of irritation, he remains off of the oxygen and is doing great. This makes him more easily transportable so he and Alissa have been bebopping around the NICU all day. They've even worked on the computer together. He is such a clever boy. He'll be blogging any day now.
Griffith's day got off to a rousing start. Apparently the physical therapist came to do his behavioral assessment this morning. She woke him up, poked and prodded him and then observed that he became quite tense. And that the more you poke at and/or fool with him, the angrier and more tense he becomes. (Yes, well, the apple didn't fall far on that one. How 'bout we just don't pester him?) Oh, and he's going to have to learn how to relax more and there are some exercises we can do for that. (Mother/baby yoga?) Anyway, despite his elevated level of irritation, he remains off of the oxygen and is doing great. This makes him more easily transportable so he and Alissa have been bebopping around the NICU all day. They've even worked on the computer together. He is such a clever boy. He'll be blogging any day now.
Tuesday August 1st
Both boys were on their best behavior last night for Grandma and Grampy. They both got baths so everyone got to help. After every one was cleaned up, slicked up and smelling good, the boys settled down for some quality snuggling. Grandma and Grampy are heading out today for a few days in the Deep South and needed to get all the loving in that they could. The boys were pretty cooperative.
Griffith spent the majority of yesterday and last night completely off of his oxygen and he did very well. Allan was breathing much easier, too, so the meds must have kicked in. They had a new nurse yesterday and apparently ran her ragged -- each decided to be awake all afternoon and each wanted someone to stand and hold his pacifier for him. The sleepovers continue. They spent the majority of last night sleeping together and were in the same bed this morning when Dad got there. They really seem to like being together. It gives them something new to look at, they are both warm as toast and it makes it easier for one nurse to stand there and hold the paci.
Griffith spent the majority of yesterday and last night completely off of his oxygen and he did very well. Allan was breathing much easier, too, so the meds must have kicked in. They had a new nurse yesterday and apparently ran her ragged -- each decided to be awake all afternoon and each wanted someone to stand and hold his pacifier for him. The sleepovers continue. They spent the majority of last night sleeping together and were in the same bed this morning when Dad got there. They really seem to like being together. It gives them something new to look at, they are both warm as toast and it makes it easier for one nurse to stand there and hold the paci.
Monday, July 31, 2006
Monday July 31st
Had lunch with the boys. Griffith was doing great. He is up to 40 mls per bottle and not having any trouble sucking it down. The only problem that he has is getting me to hurry up with it. Honestly the child has no patience at all. I am going to have to get Dad to videotape one of these tantrums because it is going to embarass him to no end some day.
Allan wasn't having as good a day. He had "gained" about 6 ounces last night which puts him over the 7 pound mark, but it wasn't true weight -- it was mostly fluid. They just don't seem to be able to get a handle on it. They can't really tell whether it is just from the chronic lung disease (the damage caused by being born so prematurely and having to spend so long on the ventilator) or if there is something else at work. So they are doing a couple more tests today to try to rule out other potential causes. If it is the chronic lung disease, then he just has to outgrow it while they try to manage the fluid issues with meds. Despite the fact that he was breathing fast, Allan was very alert throughout lunch. He was lifting and turning his head (turtling), looking all around and checking out the scenery. He was also working his pacifier over pretty good when I left. He hasn't ever shown much interest in it (not like his brother) but, for whatever reason, he was all in to it today. He didn't get to bottle-feed at lunch because he was breathing so fast, but they've given him some Lasix and if that gets rid of some of the fluid then we may be on for it tonight.
Allan wasn't having as good a day. He had "gained" about 6 ounces last night which puts him over the 7 pound mark, but it wasn't true weight -- it was mostly fluid. They just don't seem to be able to get a handle on it. They can't really tell whether it is just from the chronic lung disease (the damage caused by being born so prematurely and having to spend so long on the ventilator) or if there is something else at work. So they are doing a couple more tests today to try to rule out other potential causes. If it is the chronic lung disease, then he just has to outgrow it while they try to manage the fluid issues with meds. Despite the fact that he was breathing fast, Allan was very alert throughout lunch. He was lifting and turning his head (turtling), looking all around and checking out the scenery. He was also working his pacifier over pretty good when I left. He hasn't ever shown much interest in it (not like his brother) but, for whatever reason, he was all in to it today. He didn't get to bottle-feed at lunch because he was breathing so fast, but they've given him some Lasix and if that gets rid of some of the fluid then we may be on for it tonight.
Sunday, July 30, 2006
Weekend postscript
My clever boys have had their first sleepover. Griffith sneaked over and crashed with his brother for about 3 hours this afternoon. It was just like old times. Cheryl put them in together, they looked at each other for a few minutes and then Griffith, true to form, reached over and smacked Allan in the mouth. Brotherly love, indeed. I guess he just wanted to make sure that Allan recognized him. Really you have to kind of admire Griffith. As you can tell from the photos, Allan has him by quite a lot. A pound doesn't sound like that much until you realize that it is 20 percent of Griffith's total body weight. Other than that rocky moment, things went fine. Allan apparently was a little startled by the assault but didn't get too bent out of shape about it. They laid there for a while looking at each other, sucked on their pacifiers and listened to a tape and before too long they both drifted off to sleep. When I got there, they were snuggled up and looked as innocent as lambs.
While I was feeding Griffith, Grampy was holding Allan who was getting one of his breathing treatments. This consists of the respiratory tech holding a tube that spews out damp mist with medicine in it in front of Allan's nose. It isn't terrible but he doesn't care all that much for it and he closes his eyes, scrunches up his nose, and waves his hand to try to get the tech to leave. Some times he whines just a little. His brother was grinning from ear to ear while this was going on. Couldn't have pleased him any more if he were hitting him himself.
While I was feeding Griffith, Grampy was holding Allan who was getting one of his breathing treatments. This consists of the respiratory tech holding a tube that spews out damp mist with medicine in it in front of Allan's nose. It isn't terrible but he doesn't care all that much for it and he closes his eyes, scrunches up his nose, and waves his hand to try to get the tech to leave. Some times he whines just a little. His brother was grinning from ear to ear while this was going on. Couldn't have pleased him any more if he were hitting him himself.
Allan and Griffith -- together again
The boys co-bedding for the first time.
Allan on the left. Griffith on the right. As if there were any question about who is who.
Spoiled Rotten
Allan and Griffith have both had a good weekend. They have had so much attention that Dr. Bada has officially diagnosed them as "spoiled." I can kind of see her point because when she checked in each boy was being held by a parent or grandparent, each also had a parent or grandparent watching over him. And Cheryl was keeping watch over the whole situation. Five adults doting on about 10 pounds worth of babies might seem excessive.
Allan has now graduated to big boy diapers. No more of this preemie nonsense for him. He fits solidly in a Newborn No. 1 diaper, thank you very much. And fills them out quite nicely. His weight has been a little up and down, but he is about 6 pounds 10 ounces. He had his first bottle since his little setback with the fluid retention and did great -- ate 37 mls out of 45 before he tired out. He isn't as mad for it as Griffith is, but he does very well once you can convince him to open up and put his tongue down. There is an art to it that I haven't quite mastered. Apparently preemies are very adept at clamping their tongues up to the roof of their mouths. Which makes a lot of sense when you consider that they spend a lot of time with a vent tube, ng tubes and other unpleasant stuff shoved in their mouths. It takes a little time to convince him that this will be a pleasant experience. He isn't averse to the bottle, just skeptical.
Griffith is building up on his feeds day by day. He is now up to 30 mls per feeding which means that he doesn't need IV supplements. He loves to eat (you would, too, if you hadn't been allowed to eat for 2 weeks.) He wakes up early for his feeds and gets quite loud and insistent about being fed. He smacks his lips and makes sucking noises with his tongue and, if you don't get the hint, he progresses to squawling loudly and going red and stiff as a board which is pretty effective really. The usual pattern for care time has been to get a temperature, change the diaper and then eat. Since Griff has been getting bottle-fed, though, you have about 2 minutes maximum from disturbing him to when he insists on being fed. It is a little like NASCAR pit stops. Every one and every thing has to work just right or there is hell to pay. Once he is fed, he's as good as gold and will settle down, but he isn't going to stop until he beats you down. He used to go right to sleep after eating and burping, but lately he is spending more time awake -- looking and listening to every thing going on around him. He is gaining weight, although more slowly because he is on pure breast milk (Allan's is fortified with extra calories -- would you like fries with that?). He's still a respectable 5 pounds 4 ounces, though and they will add fortifier to his again some time next week.
Grandma and Grampy have had an opportunity to observe the boys up close which means that there is independent confirmation of just how distinct the boys' personalities are. (And of the fact that I have not been making this up.) Grandma was holding Allan and, although he was wide awake, he was content to lay still, wriggling his little fingers slowly, rolling his eyes around (slowly) to try to see where voices were coming from. Griffith, on the other hand, was stretching and wriggling, staring intently at Grampy, and kicking up a fuss because something wasn't suiting him. Night and day.
Since the boys have been moved to the same nursery, they now have double the primaries with half the time. It has been hard to adjust to not seeing everyone all the time but it has also been fun seeing Allan's nurses get used to Griffith and vice versa. Last night Allan's primary, Sarah, had them both for the first time. She has been threatening to put Allan in her pocket and take him home since April (she's going to need a bigger pocket these days). She was prepared to take on Griffith in order to have time with her Allan. The report I got this morning was that Griffith had won her over (or wore her down) with his antics last night and she spent a fair amount of time loving on him, too.
Time to go and see what Thing One and Thing Two have been up to this afternoon.
Allan has now graduated to big boy diapers. No more of this preemie nonsense for him. He fits solidly in a Newborn No. 1 diaper, thank you very much. And fills them out quite nicely. His weight has been a little up and down, but he is about 6 pounds 10 ounces. He had his first bottle since his little setback with the fluid retention and did great -- ate 37 mls out of 45 before he tired out. He isn't as mad for it as Griffith is, but he does very well once you can convince him to open up and put his tongue down. There is an art to it that I haven't quite mastered. Apparently preemies are very adept at clamping their tongues up to the roof of their mouths. Which makes a lot of sense when you consider that they spend a lot of time with a vent tube, ng tubes and other unpleasant stuff shoved in their mouths. It takes a little time to convince him that this will be a pleasant experience. He isn't averse to the bottle, just skeptical.
Griffith is building up on his feeds day by day. He is now up to 30 mls per feeding which means that he doesn't need IV supplements. He loves to eat (you would, too, if you hadn't been allowed to eat for 2 weeks.) He wakes up early for his feeds and gets quite loud and insistent about being fed. He smacks his lips and makes sucking noises with his tongue and, if you don't get the hint, he progresses to squawling loudly and going red and stiff as a board which is pretty effective really. The usual pattern for care time has been to get a temperature, change the diaper and then eat. Since Griff has been getting bottle-fed, though, you have about 2 minutes maximum from disturbing him to when he insists on being fed. It is a little like NASCAR pit stops. Every one and every thing has to work just right or there is hell to pay. Once he is fed, he's as good as gold and will settle down, but he isn't going to stop until he beats you down. He used to go right to sleep after eating and burping, but lately he is spending more time awake -- looking and listening to every thing going on around him. He is gaining weight, although more slowly because he is on pure breast milk (Allan's is fortified with extra calories -- would you like fries with that?). He's still a respectable 5 pounds 4 ounces, though and they will add fortifier to his again some time next week.
Grandma and Grampy have had an opportunity to observe the boys up close which means that there is independent confirmation of just how distinct the boys' personalities are. (And of the fact that I have not been making this up.) Grandma was holding Allan and, although he was wide awake, he was content to lay still, wriggling his little fingers slowly, rolling his eyes around (slowly) to try to see where voices were coming from. Griffith, on the other hand, was stretching and wriggling, staring intently at Grampy, and kicking up a fuss because something wasn't suiting him. Night and day.
Since the boys have been moved to the same nursery, they now have double the primaries with half the time. It has been hard to adjust to not seeing everyone all the time but it has also been fun seeing Allan's nurses get used to Griffith and vice versa. Last night Allan's primary, Sarah, had them both for the first time. She has been threatening to put Allan in her pocket and take him home since April (she's going to need a bigger pocket these days). She was prepared to take on Griffith in order to have time with her Allan. The report I got this morning was that Griffith had won her over (or wore her down) with his antics last night and she spent a fair amount of time loving on him, too.
Time to go and see what Thing One and Thing Two have been up to this afternoon.
Subscribe to:
Posts (Atom)