Just a couple of medical tid-bits RE Sir e that I neglected to include: I mentioned before the pediatrician's concern about hydrocephalus, and then I think I mentioned that we weren't so worried about that anymore, but I think I did not say why. So here's that part: e's brain is smaller than it should be and underdeveloped (something we have known since the CHOP neurosurg people looked at his MRI). Apparently, the extra fluid in his noggin making his fontanel full is the body's way of protecting the little brain. It fills up the extra spaces with fluid. The pediatrician delivered this news and was worried I would be quite upset. She was surprised when I said I thought it was good news. We already knew about the brain issues, I was just glad to cross hydrocephalus firmly off my list of things to worry about right now. Just a few days before that, e had his initial evaluation for Early Intervention services. He scored about like a 1-month old on the motor development scale but was about a 5-month-old on cognitive skills. This lined up with my assessment of him as well, so I wasn't very surprised. They actually had a better opinion of his cognitive development than I did--they have a whole host of babies to compare him to. I only have my two other kids. I'll go with their opinion on this one for now.--so that part was heartening. The Early Intervention people, like the pediatrician, were surprised by my reactions. They also keep asking questions like "what would you like to see e accomplish?" I am never sure how to answer these questions. No one, not even the fancy CHOP geneticists, know what he is capable of. How can I arbitrarily say what I would like to see him do? And what use would it be to spend time on things like that anyway? I just want to surround him with whatever supports I can find in order that he can achieve whatever it is he is going to achieve. I'm sure there will be discouraging things and alarming times. There will probably be times when we will have to come to terms with something that e just can't do. That's alright. e is a gift. I'm grateful to have him.
The kids continue to enjoy the dirt, the trees, and the space here in NH. I am rediscovering all the things I have missed--such as the sound of the wind in a natural setting rather than in a man-made one. It sounds much nicer going through trees instead of whipping around buildings. It is also nice to hear it unadulterated by traffic and people noise. It has the same sort of calming affect I find in the sound and motion of open water. I have finally convinced E that it is ok to let go of my hand when we go for walks on the road. (It is a dirt road. Cars are a rare occurrence. It is quiet enough that you can hear them coming in plenty of time to move.) It is so nice to be here. I am still totally exhausted, though. E won't stay in his bed, I is up to her usual tricks, e needs attention in the night and early mornings, all this dirt playing necessitates more baths and washing up (totally worth it)...but such is the life of a parent, yes? In the words of Bon Jovi, I'll sleep when I'm dead. Tomorrow we are going to take a trip to a farm. I wish we had brought our galoshes....
Thursday, September 27, 2012
Tuesday, September 25, 2012
There is a Balm in Gilead to heal a wounded soul.
We have escaped. Over the last year, I had daydreamed about going away for a few weeks back up to 'home' in New Hampshire. Originally, I had thought summer time would be good for that. e had other plans, though. Things went on, other things developed, and I had actually decided it would be better NOT to take the trip--but then was persuaded otherwise. Aside from the things that make it hard to be away, it is lovely to be here. I had to exert a considerable effort to arrange e's medical schedule such that pressing things got done before we left, a vacation-sized space was left in the middle, and then the rest of the things are scheduled nicely for when we get back. The result was a frenzied 5 weeks, two weeks of peace, and then another frenzied 8+ weeks after we get back. I am grateful for the break, though. We had a last-minute trip to CHOP the day before we left to upgrade to a slightly larger G Tube, but we successfully made a break for it after that. Poor baby e still struggles with his retching. I talked with the surgical nurse practitioner today about it and I'm not sure there are very many more options that can be pursued remotely. I will try fiddling a little bit with his feeds and I may have to start eliminating things from my diet as well. We shall see. In addition to being unpleasant, this retching business poses two other concerns--first, if he does actually bring anything up during these events, he runs the risk of aspirating. Second, the vigor of the retching can sometimes damage the Nissen, which could make it so he would need it surgically repaired. We would like to avoid both of those things. The poor sweet baby still doesn't complain, though, even when his little body is wracked with a fit of retches--his face gets all red and he gets all clammy. It is very sad, but he just looks around and waits for it to stop. When it is over it is as though nothing happened. Such a sweet little person.
Aside from that, we are all enjoying our break. Husband is still stuck in the Philly area for work--poor guy had to use most of his vacation time for surgeries and other hospital things this year. Not much fun. He does get to come up for a weekend at the end, though, and will bring us back down to our paved paradise at that time. Presently, 4/5 of our family are enjoying being in the clean and the quiet. The air is neither polluted by hoards of people, cars, and businesses nor clouded with incessant noise. The dirt is just dirt. Clean and nice. Not tainted with people filth. Just dirt. I and E are having a BLAST running, digging, running, exploring, running, climbing, and running. I really forgot how wonderful it is to live in a place like this. There is something of a balm in Gilead here for me. I can expand. I can breathe. I have discovered that, after this frightful year of ours, I am in dire need of convalescing--just as one who has had a long illness. My soul is chapped and raw. The fresh air, living earth, rustling trees, and slanting autumn sunshine are very soothing to it.
More to come RE our autumnal New England romp, but for now just one funny story:
E's most favorite thing to do here is to dig. He digs with his hands (evidenced by his dark brown fingernails), with trucks, with rocks, with shovels, with his whole body. He spent 4 hours one day just digging. It has been really dry this year, so the dirt is rather dusty. This means that fine dirt particulates end up in hair, ears, eyes, noses, mouths, and streaked all over faces. Grammy one day commented on his smudged visage. E replied matter-of-factly, "sometimes you have to get dirty to get the job done." We're still trying to figure out where he got that one. Perhaps from Grampa or from Thomas the Tank Engine?
Aside from that, we are all enjoying our break. Husband is still stuck in the Philly area for work--poor guy had to use most of his vacation time for surgeries and other hospital things this year. Not much fun. He does get to come up for a weekend at the end, though, and will bring us back down to our paved paradise at that time. Presently, 4/5 of our family are enjoying being in the clean and the quiet. The air is neither polluted by hoards of people, cars, and businesses nor clouded with incessant noise. The dirt is just dirt. Clean and nice. Not tainted with people filth. Just dirt. I and E are having a BLAST running, digging, running, exploring, running, climbing, and running. I really forgot how wonderful it is to live in a place like this. There is something of a balm in Gilead here for me. I can expand. I can breathe. I have discovered that, after this frightful year of ours, I am in dire need of convalescing--just as one who has had a long illness. My soul is chapped and raw. The fresh air, living earth, rustling trees, and slanting autumn sunshine are very soothing to it.
More to come RE our autumnal New England romp, but for now just one funny story:
E's most favorite thing to do here is to dig. He digs with his hands (evidenced by his dark brown fingernails), with trucks, with rocks, with shovels, with his whole body. He spent 4 hours one day just digging. It has been really dry this year, so the dirt is rather dusty. This means that fine dirt particulates end up in hair, ears, eyes, noses, mouths, and streaked all over faces. Grammy one day commented on his smudged visage. E replied matter-of-factly, "sometimes you have to get dirty to get the job done." We're still trying to figure out where he got that one. Perhaps from Grampa or from Thomas the Tank Engine?
Sunday, September 16, 2012
G Tube life
After our 5-month NICU adventure, it seems that no matter where I go, I see kids who are using the support of some device I learned about while in the hospital. We learned about LOTS of things there, and I am very happy that we have so few of them here at our house. We are getting the hang of this G Tube business, I think, and his heart monitor has not had too many false alarms (only once when the leads were loose) and had provided us with considerable peace of mind. All things considered, e is really quite well off. We were at CHOP again on Thursday, and he was able to get his hearing aids for the first time. He can definitely hear without them, but I can already see that they make a difference for him. As soon as we put them in, he perked up and started talking more than usual. We are having some issues with them in getting the feedback under control, but once we get that sorted I think they will be a great asset to him. In case you are curious about e and his accessories, here is some info about how his G Tube works and fits into our daily lives. (I'll put up some pictures eventually)
The G Tube is actually a little cap-looking thing, sort of like the thing you blow into on floaty toys or a blow up beach ball. The "extension set" is a tube that clicks onto the G Tube opening and twists into place. There is a clamp and two ports on the end of it. His food plugs into the larger port and medicine can be injected into the smaller one. It has to be 'primed,' or filled with water before it is connected so that when the food is hooked up it doesn't send all the air that was in the tube into his belly. His food gets put into a bag with a long tube and a little contraption that gets plugged into a pump which meets out the milk at a slow pace which allows him to digest it a bit better. Some kids with G Tubes can be fed 'by gravity'--where the food is just put in a syringe, attached to the extension set, suspended above the baby, and allowed to run in at whatever velocity is permitted by the tubing. e can't quite handle that, so he gets his food from the pump. Each 'bolus' feed during the day takes about 45 minutes. He eats at 8a, 11a, 2p, and 5p. Before and after every feed, we have to 'vent' him, wherein we connect his extension set to an open syringe and suspend it above him in order for him to get the extra air out of his belly. Because of his Nissen fundoplication, he has trouble burping like a normal baby would. This 'venting' business allows him to get the bubbles out. We have referred to it before as his 'Freud time'--he lies down and 'vents.' Get it? Ha. We crack us up. His G Tube site has healed up really well, so all we need to do to care for it is keep it clean and dry. A few swabs with Q Tips each day does the trick. It is also permissible for it to be submerged, so he is allowed to have baths (much to his chagrin). Also because of his fundoplication, e is not able to put enough food in his belly during the day in order to sustain himself. Therefore, he is fed continuously through the night as well. This 'continuous feed' begins at 8pm. We have to change the rate and dose settings on the pump each night and morning. Overnight, he gets 440 mL over 10 hours, so he is hooked up to his food from 8p to 6a. It is not ok to leave the breast milk out all night, so we have to pour in fresh stuff around midnight and then we just let the rest run till morning. We are technically supposed to change it every 4 hours, but going 6 doesn't seem to have caused any problems. He gets a fresh extension set once every week and a fresh feed bag each morning. His G Tube needs to be replaced every so often as well. Eventually I will be able to do that at home, but the first one will be done by the surgeon. We are slowly getting the hang of things. I have learned some tricks to make feeding him on the go a little easier, and I have great hope that this will all someday feel manageable. We are still working to get his retching under control. This sometimes alarms people when we are out in public. Poor baby. It can't be nice for him, either. I am grateful to know about some of the things we can feel grateful NOT to have, and I am grateful for the aids he does have that make his life possible.
The G Tube is actually a little cap-looking thing, sort of like the thing you blow into on floaty toys or a blow up beach ball. The "extension set" is a tube that clicks onto the G Tube opening and twists into place. There is a clamp and two ports on the end of it. His food plugs into the larger port and medicine can be injected into the smaller one. It has to be 'primed,' or filled with water before it is connected so that when the food is hooked up it doesn't send all the air that was in the tube into his belly. His food gets put into a bag with a long tube and a little contraption that gets plugged into a pump which meets out the milk at a slow pace which allows him to digest it a bit better. Some kids with G Tubes can be fed 'by gravity'--where the food is just put in a syringe, attached to the extension set, suspended above the baby, and allowed to run in at whatever velocity is permitted by the tubing. e can't quite handle that, so he gets his food from the pump. Each 'bolus' feed during the day takes about 45 minutes. He eats at 8a, 11a, 2p, and 5p. Before and after every feed, we have to 'vent' him, wherein we connect his extension set to an open syringe and suspend it above him in order for him to get the extra air out of his belly. Because of his Nissen fundoplication, he has trouble burping like a normal baby would. This 'venting' business allows him to get the bubbles out. We have referred to it before as his 'Freud time'--he lies down and 'vents.' Get it? Ha. We crack us up. His G Tube site has healed up really well, so all we need to do to care for it is keep it clean and dry. A few swabs with Q Tips each day does the trick. It is also permissible for it to be submerged, so he is allowed to have baths (much to his chagrin). Also because of his fundoplication, e is not able to put enough food in his belly during the day in order to sustain himself. Therefore, he is fed continuously through the night as well. This 'continuous feed' begins at 8pm. We have to change the rate and dose settings on the pump each night and morning. Overnight, he gets 440 mL over 10 hours, so he is hooked up to his food from 8p to 6a. It is not ok to leave the breast milk out all night, so we have to pour in fresh stuff around midnight and then we just let the rest run till morning. We are technically supposed to change it every 4 hours, but going 6 doesn't seem to have caused any problems. He gets a fresh extension set once every week and a fresh feed bag each morning. His G Tube needs to be replaced every so often as well. Eventually I will be able to do that at home, but the first one will be done by the surgeon. We are slowly getting the hang of things. I have learned some tricks to make feeding him on the go a little easier, and I have great hope that this will all someday feel manageable. We are still working to get his retching under control. This sometimes alarms people when we are out in public. Poor baby. It can't be nice for him, either. I am grateful to know about some of the things we can feel grateful NOT to have, and I am grateful for the aids he does have that make his life possible.
Sunday, September 9, 2012
The week in brief
I and E were playing in the living room this past week while I was doing some things in the kitchen. The couch was a ship (it has been many things in its 25 year life...and it shows...). They had collected all the toy food from our pretend kitchen as well as the two big Melissa and Doug chopping knives we have, several books, stuffed animals, cars, trains, and other things that I am still finding in the cushions...they were sailing away on the ocean. I observed this exchange:
I: "There is a shark! Quick, E, jump in and battle it!" (handing him a knife)
E: (takes the knife, looks warily in the 'water') "What if I get boo boos?"
I: "That's what happens in battles. You'll be fine."
E: "But I'll get boo boos."
I: "I'll wipe the blood off later. You'll be fine. Now get in there and bop it on the head."
E: (Still regarding the 'water' with uncertainty) "Ummmm...no way."
I: (Sighing exasperatedly) "Fine! I'll do it. Give me the knife!"
(I snatches knife, leaps off the couch/ship, 'battles' the 'shark', and turns to climb back up out of the 'water.')
I: "See?! I fixed it. I'm fine. No boo boos."
I was proud of E for taking a stand, and I was proud of I for jumping in instead of waiting around to be saved. Not to mention the fact that this little game of theirs lasted a good 15 or 20 minutes before anyone screamed at/hit/pushed/kicked anyone else. Not that any of those things ever happen in our house. Ever.
I got a $7 haircut last week. Not something I would recommend. I might have to go and buy a real haircut now to fix it. Sometimes I envy Husband's hairdo.
In e news, we have been cleared for now of imminent concerns RE hydrocephalus. Phew. Our pediatrician spoke with the neurosurgeon and clarified some of the instructions. It sounds like e's fontanel could be full due to some of the other abnormalities in his brain. (About which I will gain further clarification at our next Peds appointment.) A CT scan will be planned at some point in the next month or two. Until then and as long as none of the other symptoms of hydrocephalus show up, we can cross that off our list of things to fret about this week.
I: "There is a shark! Quick, E, jump in and battle it!" (handing him a knife)
E: (takes the knife, looks warily in the 'water') "What if I get boo boos?"
I: "That's what happens in battles. You'll be fine."
E: "But I'll get boo boos."
I: "I'll wipe the blood off later. You'll be fine. Now get in there and bop it on the head."
E: (Still regarding the 'water' with uncertainty) "Ummmm...no way."
I: (Sighing exasperatedly) "Fine! I'll do it. Give me the knife!"
(I snatches knife, leaps off the couch/ship, 'battles' the 'shark', and turns to climb back up out of the 'water.')
I: "See?! I fixed it. I'm fine. No boo boos."
I was proud of E for taking a stand, and I was proud of I for jumping in instead of waiting around to be saved. Not to mention the fact that this little game of theirs lasted a good 15 or 20 minutes before anyone screamed at/hit/pushed/kicked anyone else. Not that any of those things ever happen in our house. Ever.
I got a $7 haircut last week. Not something I would recommend. I might have to go and buy a real haircut now to fix it. Sometimes I envy Husband's hairdo.
In e news, we have been cleared for now of imminent concerns RE hydrocephalus. Phew. Our pediatrician spoke with the neurosurgeon and clarified some of the instructions. It sounds like e's fontanel could be full due to some of the other abnormalities in his brain. (About which I will gain further clarification at our next Peds appointment.) A CT scan will be planned at some point in the next month or two. Until then and as long as none of the other symptoms of hydrocephalus show up, we can cross that off our list of things to fret about this week.
Sunday, September 2, 2012
Special.
I've always been especially afraid of having a child with special needs. I've looked at other parents in that situation, and wondered--how do they do it? Parenting in and of itself is plenty difficult--when a kid needs more, everything is more, harder, and longer.
Because of my faith, I believe that God talks to people. This can be a dramatic incident, but usually it's just a feeling or a thought or a collection of circumstances that helps you to see something differently. I had a few of these experiences before e was born--some of them before I even knew I was pregnant:
First, I took I and E to a little music event at Barnes and Noble. One of the songs went something like this "I may not look or learn just like you. My voice may not sound just like yours does. But I have feelings just like you, so smile and say hello." During that song, I experienced the feeling I have learned is one of the ways God talks to me. I didn't understand exactly what he was trying to say at that point, but when I arrived home that same day, our new church magazine had arrived. There were three separate stories about children with special needs--two written by parents and one by a sibling. That feeling again. I began to worry. Days later, I learned I was pregnant. "Oh, boy." I thought.
Things progressed, ultrasounds were had, frightful things said by doctors. When we first heard the news, I was frightened, but I found myself completely unsurprised. I wasn't sure how I was going to handle whatever was coming--I felt totally overwhelmed parenting my two other children already. It was a long process to get to a place of peace and acceptance, but it did come.
Another time before e was born--I don't know if it was before or after I learned of the pregnancy--we were visiting the aquarium and I saw in the cafeteria a girl--maybe about 17 or 18--who was in a wheelchair and entirely dependent on others. I noticed that her hair was neatly braided, and someone (perhaps her mother?) was lovingly and carefully feeding her with a spoon. The girl had some trouble keeping the food in her mouth, and each time some spilled out the person feeding her would gently wipe her clean again, never allowing her to remain a mess--and she seemed very happy to be doing so. The feeling again.
In a general conference session just after e's birth, this quote was read twice: “some of the sweetest spirits are housed in frail frames" In our scriptures, it is written: "Remember the aworth of bsouls is great in the sight of God" I am beginning to get it. My perspective has changed/is changing. I am aware now of being afforded a privilege in this. I hope I can be worthy of it.
Because of my faith, I believe that God talks to people. This can be a dramatic incident, but usually it's just a feeling or a thought or a collection of circumstances that helps you to see something differently. I had a few of these experiences before e was born--some of them before I even knew I was pregnant:
First, I took I and E to a little music event at Barnes and Noble. One of the songs went something like this "I may not look or learn just like you. My voice may not sound just like yours does. But I have feelings just like you, so smile and say hello." During that song, I experienced the feeling I have learned is one of the ways God talks to me. I didn't understand exactly what he was trying to say at that point, but when I arrived home that same day, our new church magazine had arrived. There were three separate stories about children with special needs--two written by parents and one by a sibling. That feeling again. I began to worry. Days later, I learned I was pregnant. "Oh, boy." I thought.
Things progressed, ultrasounds were had, frightful things said by doctors. When we first heard the news, I was frightened, but I found myself completely unsurprised. I wasn't sure how I was going to handle whatever was coming--I felt totally overwhelmed parenting my two other children already. It was a long process to get to a place of peace and acceptance, but it did come.
Another time before e was born--I don't know if it was before or after I learned of the pregnancy--we were visiting the aquarium and I saw in the cafeteria a girl--maybe about 17 or 18--who was in a wheelchair and entirely dependent on others. I noticed that her hair was neatly braided, and someone (perhaps her mother?) was lovingly and carefully feeding her with a spoon. The girl had some trouble keeping the food in her mouth, and each time some spilled out the person feeding her would gently wipe her clean again, never allowing her to remain a mess--and she seemed very happy to be doing so. The feeling again.
In a general conference session just after e's birth, this quote was read twice: “some of the sweetest spirits are housed in frail frames" In our scriptures, it is written: "Remember the aworth of bsouls is great in the sight of God" I am beginning to get it. My perspective has changed/is changing. I am aware now of being afforded a privilege in this. I hope I can be worthy of it.
Swap!
The other day at the library, I let E hold the receipt with all our due dates on it. He immediately started swinging it around and shouting "swap!" at things. I did my best to herd him out the door without too much damage, but as I was opening the doors with e in arms (they really need one of those automatic open buttons...) he ran up to this 10ish year-old boy standing nearby and repeatedly "swapped" him with the receipt. E then came obediently back and calmly reported "I swapped him." The boy had a very offended look on his face.
I've had earned a new insult to my singing from Isabel: This morning it was "Uh...Mom? My brain is getting tired from your singing."
In other news, Sir e is still doing well. His retching is a little more under control now, though he has had some sturdy bouts recently. We continue to work on it. He seems to be growing much better at home. It takes fewer calories here. He has been pushing with his feet a little lately. He will have his first meeting with the early intervention people soon. He is so sweet and happy. It is so nice to have him home with us.
I've had earned a new insult to my singing from Isabel: This morning it was "Uh...Mom? My brain is getting tired from your singing."
In other news, Sir e is still doing well. His retching is a little more under control now, though he has had some sturdy bouts recently. We continue to work on it. He seems to be growing much better at home. It takes fewer calories here. He has been pushing with his feet a little lately. He will have his first meeting with the early intervention people soon. He is so sweet and happy. It is so nice to have him home with us.
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