12/21/08
12/20/08
Back to the Blog
Well, it's been awhile since we posted. Bobby is keeping us running these days - no more long naps :) But we're back and we promise to stay more up to date.
Since we last wrote we did resolve our daycare situation. We finally gave up on trying to make day care work and we hired a new nanny to watch Bubs until after his next surgery. Its turned out to be a wonderful decision. Nanny Beth is amazing. They adore one another and Bobby has made great progress in his therapy since she started working with him. He is exponentially stronger. He can roll over tummy to back. He's started working on some pre-crawiling moves. He's full of curiousity and wonder about the world around him. Valerie and I secretly believe that Beth is probably a better care giver than we are. But then we figure we're pretty good parents for having brought Beth to Bobby in the first place.
Not, of course, that life with Bubby doesn't involve some challenges. After weeks of no weight gain he was diagnosed with H. Pylori, a bacterial infection usually found in unsanitary environments and rarely found in babies. But that's Bobby for you. A round of antibiotics cleared up the gastritis caused by the infection and he's since gone back to his full figured ways.
He had a cardiac catheterization the day after Thanksgiving. This is a diagnostic test where they took the last set of measurements for his heart surgery. They have decided that the standard 2 ventricle repair is not an option for him. Instead they are going to put in a Glen shunt which will reroute the blood supply from his body sending it directly to the lungs. We're in the process of getting a second opinion, but all signs point to this being the eventual outcome. His surgery is scheduled for January 13th.
In the meantime, Bobby was well enough in October that we were able to visit my family in Kansas City for the first time. Bobby got to meet his Uncle Bob, one of the men he's named for. Big Bob was in the hospital, having just finished some very strong chemotherapy. He loved seeing Bobby. Bobby, for his part, was very excited to meet another member of the Robert lineage. He laid on my brother's stomach for a long time, chatting loudly. It was a wonderful visit.
With surgery looming, we are putting all our focus into enjoying Bobby's first Christmas. What started out as 'we'll just get him a couple of presents' has turned into a marathon of gift giving where he gets presents every day between now and Christmas day. At one point, Valerie questioned whether we were overdoing it, but then I reminded her "But he's having surgery in a month". I just want that recorded for posterity so Bobby will know which mama has had his back from the beginning.
Since we last wrote we did resolve our daycare situation. We finally gave up on trying to make day care work and we hired a new nanny to watch Bubs until after his next surgery. Its turned out to be a wonderful decision. Nanny Beth is amazing. They adore one another and Bobby has made great progress in his therapy since she started working with him. He is exponentially stronger. He can roll over tummy to back. He's started working on some pre-crawiling moves. He's full of curiousity and wonder about the world around him. Valerie and I secretly believe that Beth is probably a better care giver than we are. But then we figure we're pretty good parents for having brought Beth to Bobby in the first place.
Not, of course, that life with Bubby doesn't involve some challenges. After weeks of no weight gain he was diagnosed with H. Pylori, a bacterial infection usually found in unsanitary environments and rarely found in babies. But that's Bobby for you. A round of antibiotics cleared up the gastritis caused by the infection and he's since gone back to his full figured ways.
He had a cardiac catheterization the day after Thanksgiving. This is a diagnostic test where they took the last set of measurements for his heart surgery. They have decided that the standard 2 ventricle repair is not an option for him. Instead they are going to put in a Glen shunt which will reroute the blood supply from his body sending it directly to the lungs. We're in the process of getting a second opinion, but all signs point to this being the eventual outcome. His surgery is scheduled for January 13th.
In the meantime, Bobby was well enough in October that we were able to visit my family in Kansas City for the first time. Bobby got to meet his Uncle Bob, one of the men he's named for. Big Bob was in the hospital, having just finished some very strong chemotherapy. He loved seeing Bobby. Bobby, for his part, was very excited to meet another member of the Robert lineage. He laid on my brother's stomach for a long time, chatting loudly. It was a wonderful visit.
With surgery looming, we are putting all our focus into enjoying Bobby's first Christmas. What started out as 'we'll just get him a couple of presents' has turned into a marathon of gift giving where he gets presents every day between now and Christmas day. At one point, Valerie questioned whether we were overdoing it, but then I reminded her "But he's having surgery in a month". I just want that recorded for posterity so Bobby will know which mama has had his back from the beginning.
12/13/08
11/27/08
11/1/08
10/13/08
10/12/08
Welcome to Our New Home
Bobby's web page at www.babyannounce.net/bobbyg is soon to expire so we decided to move to a site with more functionality. We can't really do Bobby justice without full multimedia capabilities. We'll gradually move over all the old content.
Things are quieting down for the Grunsteds. We have a new day care provider for Bobby, starting October 27th. Beth is very excited to work with Bobby and wants to take him on lots of fun field trips. Valerie and I are meeting on Tuesday with the executive director of the community center where we had unsuccessfully tried to place Bobby. Our hope is that the center will implement some new policies regarding their admission of special needs children. I'm a bit nervous. I'm good at writing letters but in person confrontation scares me. That's why it's good I have Valerie at my side.
Bobby is eating much easier these days. His endoscopy showed no physiological problems with his digestive tract. We'll find out tomorrow if he has any allergies. In the meantime, he's eating well and gaining weight. Hopefully this means that Bobby's problems were caused by an acid reflux problem that he's now outgrowing.
Because he feels better, we're able to get out of the house much more often. Friday night we went to dinner and to Borders. Pre Bobby, Valerie and I split up at the book store, convening after an hour or so for coffee and for a comparison of the books we'd found. Now Valerie and I split up at the book store only to run into each other five minutes later in the children's section to compare pop up books. I guess it's true what they say - the more things change, the more they stay the same.
Things are quieting down for the Grunsteds. We have a new day care provider for Bobby, starting October 27th. Beth is very excited to work with Bobby and wants to take him on lots of fun field trips. Valerie and I are meeting on Tuesday with the executive director of the community center where we had unsuccessfully tried to place Bobby. Our hope is that the center will implement some new policies regarding their admission of special needs children. I'm a bit nervous. I'm good at writing letters but in person confrontation scares me. That's why it's good I have Valerie at my side.
Bobby is eating much easier these days. His endoscopy showed no physiological problems with his digestive tract. We'll find out tomorrow if he has any allergies. In the meantime, he's eating well and gaining weight. Hopefully this means that Bobby's problems were caused by an acid reflux problem that he's now outgrowing.
Because he feels better, we're able to get out of the house much more often. Friday night we went to dinner and to Borders. Pre Bobby, Valerie and I split up at the book store, convening after an hour or so for coffee and for a comparison of the books we'd found. Now Valerie and I split up at the book store only to run into each other five minutes later in the children's section to compare pop up books. I guess it's true what they say - the more things change, the more they stay the same.
10/4/08
The Bubsy Blaster
It’s wild ride here on Magnolia Avenue, hitched to the Bubsy coaster like we are and all.
The hospitalization of Children’s lasted 4 days. On the first day, he was admitted from the emergency room. Cardiology discontinued Lasix, his primary diuretic. The GI doc (we’ll call him Dr. Josh…mostly because that’s his name) put him on senna, an over the counter medication to increase the motility of the bowels (help the poop work it’s way down the chute).
On the second day Bobby made a poop for the ages. Cardiology decided that he shouldn’t be off of his Lasix, so they put him on a new, smaller dose. GI said that if he pooped the next day he could go home.
On the third day, Cardiology decided to keep him to make sure he responded OK to the Lasix. GI was too busy to see Bobby.
On the fourth day, Bobby vomited up part of his morning feed. Cardiology wouldn’t release him, saying we needed to talk to GI. GI still didn’t see Bobby. After we paged Dr. Josh he said that Cardiology was keeping him. He also said we shouldn’t page him anymore because ‘he had hospital patients to take care of’.
After a flurry of angry calls questioning why our son was in the hospital and no one knew why, Bobby was released rather hastily. All we accomplished for the GI problems that took us to the hospital was getting an over the counter medication the doctor should have thought to prescribe on an outpatient basis. Instead, Dr. Josh poo-poo’d our concerns about Bobby’s constipation until we ended up in the emergency room with a baby screaming with abdominal pain.
With all of his GI problems, as of September 25, Bobby had lost 4 oz since his surgery two months earlier. He’d slid from the 50th percentile on the Down Syndrome growth chart to the 25th percentile. So, finally, the GI doctor (a new doctor, much more responsive) scheduled an endoscopy for this Tuesday, The endoscopy involves sending a little camera down Bobby’s esophagus and another one up his back side to look for any GI issues. It’s the best diagnostic test they have.Of course, the day the doctor decided to do the endoscopy is the day Bobby started gaining weight like a mad man. We tried a new feeding schedule. He spends 2 hours eating and hanging out in his Tucker sling, a device that keeps him from sliding when we elevate his bed. The elevation minimizes the acid reflux. In the last eight days, he’s gained over half a pound.
The week before and after Bobby’s hospitalization were also topsy turvy on the daycare end. It became very clear to us that the early head start program that accepted him never intended for Bobby to attend the program. They were afraid to turn him down because it might look like a violation of the Americans with Disability Act (ADA) so they accepted him and made the transition requirements impossible for two working parents.
We spent about a week, hat in hand, being interrogated by the center nurse who was frightening the staff with misinformation about Bobby’s condition and being ignored by the center director who failed to return our calls and emails. When we did talk to her she said that Bobby’s transition would take 3-4 weeks and would include requirements like Valerie and I taking time off work to attend the day care center without Bobby, so we could understand how the classroom works.
Then, towards the end of the second week, Valerie and I found our fire again. As desperate as we are to find day care, we couldn’t leave Bobby in a place that so clearly didn’t want him. I was struggling being in a position of trying to convince someone that Bobby was worth their time. He’s the sweetest human being in the world. Taking care of him is a privilege, not some problem to be dodged. Plus, if I’m forced to go there, there is the ADA, designed to protect the rights of innocents like Bobby. So, we’ve stopped being beggars and have started being ourselves – mamas fully capable of protecting their baby boy.
First we decided to get Bobby a nanny until after his surgery. We can’t really afford it, but it’s the safest solution for him and peace of mind for his mamas. We think we found the right person – a woman who’s spent years doing special needs adoptions. She’s taking a year off and wants to get some first hand baby sugar. Bobby’s just the guy for her.
Then we turned our attention to the day care center. We spoke with several advocates in the Down Syndrome community. We could sue. The evidence of discrimination is overwhelming. But, we don’t have the energy, nor are we interested in personal compensation. We want new policies. So we wrote a letter to the director, explaining our position and detailing our desired changes. And we copied everyone from the director’s supervisor to the U.S. Department of Justice. You can view it at the following link if you like:
http://docs.google.com/Doc?id=dhgg89hh_25mhc9wg3
Bobby himself is, of course, sweetly oblivious to the drama around him. He spends his days playing and smiling and listening to music. Classic Country Western is his favorite. He can scoot across his playpen now. He makes raspberries on the back of his hand. He is showing a proclivity towards cow related toys. Today we’re headed to Lambs Farm, a place in the suburbs that has residential and work programs for individuals with developmental disabilities. Our goal is to some pictures of Bobby and a real cow, horse, goat, chicken. I’m sure we’ll have a fabulous time – I just wish the rest of life could be so simple.
The hospitalization of Children’s lasted 4 days. On the first day, he was admitted from the emergency room. Cardiology discontinued Lasix, his primary diuretic. The GI doc (we’ll call him Dr. Josh…mostly because that’s his name) put him on senna, an over the counter medication to increase the motility of the bowels (help the poop work it’s way down the chute).
On the second day Bobby made a poop for the ages. Cardiology decided that he shouldn’t be off of his Lasix, so they put him on a new, smaller dose. GI said that if he pooped the next day he could go home.
On the third day, Cardiology decided to keep him to make sure he responded OK to the Lasix. GI was too busy to see Bobby.
On the fourth day, Bobby vomited up part of his morning feed. Cardiology wouldn’t release him, saying we needed to talk to GI. GI still didn’t see Bobby. After we paged Dr. Josh he said that Cardiology was keeping him. He also said we shouldn’t page him anymore because ‘he had hospital patients to take care of’.
After a flurry of angry calls questioning why our son was in the hospital and no one knew why, Bobby was released rather hastily. All we accomplished for the GI problems that took us to the hospital was getting an over the counter medication the doctor should have thought to prescribe on an outpatient basis. Instead, Dr. Josh poo-poo’d our concerns about Bobby’s constipation until we ended up in the emergency room with a baby screaming with abdominal pain.
With all of his GI problems, as of September 25, Bobby had lost 4 oz since his surgery two months earlier. He’d slid from the 50th percentile on the Down Syndrome growth chart to the 25th percentile. So, finally, the GI doctor (a new doctor, much more responsive) scheduled an endoscopy for this Tuesday, The endoscopy involves sending a little camera down Bobby’s esophagus and another one up his back side to look for any GI issues. It’s the best diagnostic test they have.Of course, the day the doctor decided to do the endoscopy is the day Bobby started gaining weight like a mad man. We tried a new feeding schedule. He spends 2 hours eating and hanging out in his Tucker sling, a device that keeps him from sliding when we elevate his bed. The elevation minimizes the acid reflux. In the last eight days, he’s gained over half a pound.
The week before and after Bobby’s hospitalization were also topsy turvy on the daycare end. It became very clear to us that the early head start program that accepted him never intended for Bobby to attend the program. They were afraid to turn him down because it might look like a violation of the Americans with Disability Act (ADA) so they accepted him and made the transition requirements impossible for two working parents.
We spent about a week, hat in hand, being interrogated by the center nurse who was frightening the staff with misinformation about Bobby’s condition and being ignored by the center director who failed to return our calls and emails. When we did talk to her she said that Bobby’s transition would take 3-4 weeks and would include requirements like Valerie and I taking time off work to attend the day care center without Bobby, so we could understand how the classroom works.
Then, towards the end of the second week, Valerie and I found our fire again. As desperate as we are to find day care, we couldn’t leave Bobby in a place that so clearly didn’t want him. I was struggling being in a position of trying to convince someone that Bobby was worth their time. He’s the sweetest human being in the world. Taking care of him is a privilege, not some problem to be dodged. Plus, if I’m forced to go there, there is the ADA, designed to protect the rights of innocents like Bobby. So, we’ve stopped being beggars and have started being ourselves – mamas fully capable of protecting their baby boy.
First we decided to get Bobby a nanny until after his surgery. We can’t really afford it, but it’s the safest solution for him and peace of mind for his mamas. We think we found the right person – a woman who’s spent years doing special needs adoptions. She’s taking a year off and wants to get some first hand baby sugar. Bobby’s just the guy for her.
Then we turned our attention to the day care center. We spoke with several advocates in the Down Syndrome community. We could sue. The evidence of discrimination is overwhelming. But, we don’t have the energy, nor are we interested in personal compensation. We want new policies. So we wrote a letter to the director, explaining our position and detailing our desired changes. And we copied everyone from the director’s supervisor to the U.S. Department of Justice. You can view it at the following link if you like:
http://docs.google.com/Doc?id=dhgg89hh_25mhc9wg3
Bobby himself is, of course, sweetly oblivious to the drama around him. He spends his days playing and smiling and listening to music. Classic Country Western is his favorite. He can scoot across his playpen now. He makes raspberries on the back of his hand. He is showing a proclivity towards cow related toys. Today we’re headed to Lambs Farm, a place in the suburbs that has residential and work programs for individuals with developmental disabilities. Our goal is to some pictures of Bobby and a real cow, horse, goat, chicken. I’m sure we’ll have a fabulous time – I just wish the rest of life could be so simple.
9/20/08
Oops, Bobby's Hospitalized Again
Well, we're back. We brought Bubsy to Children's Memorial this morning after the second straight night of no sleep. He's had abdominal pain for a while, first centerd around feeding times, that's gradually gotten worse. Last night, we couldn't get him any relief.
The doctors think it might be a side effect of one of his medications. Hopefully, it will be that easy. Otherwise, he'll have to be sedated for an endoscopy on Monday. They don't think anything really scary is wrong. They think he might be allergic to milk. Poor little guy.
Its not been a banner week for the Grunsteds. It started off well enough - Tuesday we had our adoption court hearing and Bobby was served with the papers announcing my intent to adopt him (see photo on home page). The hearing itself was easy - the judge asked about his feeding tube, asked what we did for a living, asked where we live and how long we've been together. He then told us about how the nun who runs a local group home for developmentally disabled folks is the aunt of one of the judges he works with.
To my surprise, the week's toughest interrogation took place on Wednesday when the nurse and head teacher at Bobby's new day care came to our house. The nurse was very rude and basically told us that Bobby shouldn't be in day care. This even though we have letters from each of Bobby's doctors saying they had no medical reason to advise against him being placed in the program. The worst part was that the nurse didn't listen to anything we had to say about Bobby's medical condition and apparenty scared the heck out of his prospective teacher. So we don't know what's going to happen. It's very scary because we had stopped looking for other options when Bobby was accepted and we told his current nanny her last day was October 1st. My biggest issue is not that they might decide Bobby's not safe to be in the program - if they can't provide for his care, then we don't want him there, obviously. But the decision isn't being made based on facts. Its being dictated by a nurse who has never examined Bobby or even spent 30 seconds thinking about him as Bobby instead of a baby with Ds. And instead of these questions coming up during the original enrolment, they accepted him even though they had access to all the medical information they are now using against him. We have a meeting next week to see what's going to happen.
So that's that. Valerie and I are worn out from worry over all of Bobby's issues. We have folks trying to help with day care ideas, but nothing seems to pan out. We had to go to the er to get some progress made with his GI issues. It's getting very difficult to keep the longer term in perspecive as we struggle to make progress in the now. Thank God Bobby is so cuddly.
The doctors think it might be a side effect of one of his medications. Hopefully, it will be that easy. Otherwise, he'll have to be sedated for an endoscopy on Monday. They don't think anything really scary is wrong. They think he might be allergic to milk. Poor little guy.
Its not been a banner week for the Grunsteds. It started off well enough - Tuesday we had our adoption court hearing and Bobby was served with the papers announcing my intent to adopt him (see photo on home page). The hearing itself was easy - the judge asked about his feeding tube, asked what we did for a living, asked where we live and how long we've been together. He then told us about how the nun who runs a local group home for developmentally disabled folks is the aunt of one of the judges he works with.
To my surprise, the week's toughest interrogation took place on Wednesday when the nurse and head teacher at Bobby's new day care came to our house. The nurse was very rude and basically told us that Bobby shouldn't be in day care. This even though we have letters from each of Bobby's doctors saying they had no medical reason to advise against him being placed in the program. The worst part was that the nurse didn't listen to anything we had to say about Bobby's medical condition and apparenty scared the heck out of his prospective teacher. So we don't know what's going to happen. It's very scary because we had stopped looking for other options when Bobby was accepted and we told his current nanny her last day was October 1st. My biggest issue is not that they might decide Bobby's not safe to be in the program - if they can't provide for his care, then we don't want him there, obviously. But the decision isn't being made based on facts. Its being dictated by a nurse who has never examined Bobby or even spent 30 seconds thinking about him as Bobby instead of a baby with Ds. And instead of these questions coming up during the original enrolment, they accepted him even though they had access to all the medical information they are now using against him. We have a meeting next week to see what's going to happen.
So that's that. Valerie and I are worn out from worry over all of Bobby's issues. We have folks trying to help with day care ideas, but nothing seems to pan out. We had to go to the er to get some progress made with his GI issues. It's getting very difficult to keep the longer term in perspecive as we struggle to make progress in the now. Thank God Bobby is so cuddly.
9/15/08
Daycare, Raspberries, and Pyloric Stenosis
It's been quite a few weeks in the life of young Master Bubs. We found daycare! And by we, I mean Valerie, who did nearly all of the work. Starting next week, Bobby will be attending an Early Head Start Program. He qualifies based upon his Down Syndrome diagnosis. They have a nurse on staff, a very palatable 3 teachers to 8 infant ratio, and a staff that is already charmed in advance by Bobby. It's a huge relief.
It's a huge relief because the feeding tube is not going anywhere for a while. Since Bobby's surgery we've scarcely been able to work with a bottle because he has had some severe digestive problems. What started as the occasional spit up became vomiting of 2-3 feeds a day. His weight stalled, he was miserable all of the time. The whole thing was terrible.
Last week we took him to the GI doctor. They found that his problem may be something called pyloric stenosis. Essentially, the condition is caused by an infant being unable to relax the muscle that connects the stomach and the first part of the small intestine. Over time, the muscle gets very big from being overworked and food can't pass out of the stomach very well. The solution is, of course, a surgery. But not a horrible one, like open heart surgery. We're doing more testing today, but we may just watch the condition for a month or two.
The good digestion news is that we switched to soy formula last week and things are looking up. Bobby has had several good days and seems to be feeling much better, although his daily fevers are returning. Some days it feels like we're just playing the carnival game 'Whack A Mole'. We whack one ailment into submission and two more pop up to replace it.
In much, much happier news, Bobby's progressing in his development. His neck is getting much stronger and he's able to hold it up for a few seconds at a time. We're working with him on putting his toes to his mouth (ab crunchers) and reaching for toys (working his pecs).
Verbally, he's going crazy. Sunday morning about 3 am I woke up to the sounds of Bobby fopping away in his bassinet. His favorite sentence so far involves a series of coos and ends with a raspberry. It's the sweetest sound ever.
Tomorrow the three of us go to court for Bobby's adoption hearing. I'm very excited because, before court, we have to go to the sheriff's office so Bobby can be served with papers. Five months old and, already, he'll have a record. That kid is 2 cool 4 drool.
It's a huge relief because the feeding tube is not going anywhere for a while. Since Bobby's surgery we've scarcely been able to work with a bottle because he has had some severe digestive problems. What started as the occasional spit up became vomiting of 2-3 feeds a day. His weight stalled, he was miserable all of the time. The whole thing was terrible.
Last week we took him to the GI doctor. They found that his problem may be something called pyloric stenosis. Essentially, the condition is caused by an infant being unable to relax the muscle that connects the stomach and the first part of the small intestine. Over time, the muscle gets very big from being overworked and food can't pass out of the stomach very well. The solution is, of course, a surgery. But not a horrible one, like open heart surgery. We're doing more testing today, but we may just watch the condition for a month or two.
The good digestion news is that we switched to soy formula last week and things are looking up. Bobby has had several good days and seems to be feeling much better, although his daily fevers are returning. Some days it feels like we're just playing the carnival game 'Whack A Mole'. We whack one ailment into submission and two more pop up to replace it.
In much, much happier news, Bobby's progressing in his development. His neck is getting much stronger and he's able to hold it up for a few seconds at a time. We're working with him on putting his toes to his mouth (ab crunchers) and reaching for toys (working his pecs).
Verbally, he's going crazy. Sunday morning about 3 am I woke up to the sounds of Bobby fopping away in his bassinet. His favorite sentence so far involves a series of coos and ends with a raspberry. It's the sweetest sound ever.
Tomorrow the three of us go to court for Bobby's adoption hearing. I'm very excited because, before court, we have to go to the sheriff's office so Bobby can be served with papers. Five months old and, already, he'll have a record. That kid is 2 cool 4 drool.
8/18/08
A New Life All Around
We are all adjusting to life after Bobby's surgery. Valerie and I agree that this new world we're in feels very different - his heart is no longer our primary concern, we have moved on to thinking about daycare and therapy and getting rid of the feeding tube.
Bobby doesn't feel well today. We think we may have aggravated his sternum that still needs to finish healing. He's been so active that we probably rushed his recovery a bit. I stayed home from work today and Valerie and I have been exchanging worried phone calls all day. I'm very comfortable now with dealing with symptoms of heart failure - not at all comfortable when he's achy or has a stuffy nose.
We're looking for new daycare, starting the end of next month. It's very difficult - folks are scared away by Bobby's feeding tube, even though, as we tell them, its much less work than bottle feeding. That said we have one option that's logistically challenging but feels like a great fit for Bobby. So we'll continue to look, knowing that we have a safety net. Its very hard to have so many people turning down our wonderful son. The good news - no one seems fazed by his Down Syndrome, just that tube.
We're starting physical, occupational, and speech therapy. In speech, our goal is to get rid that darn tube. Bobby's progressing - what was a horrible oral aversion has become manageable. He's learned to suck on his thumb. His poor muscle tone won't let him keep his hand to his mouth for long, so he's learned to use both arms - one as a brace and the other as the object of his thumb sucking desire. I love to see the resourcefulness in him.
In Physical and Occupational therapy we're working on his neck extension. Again because of muscle tone issues, Bobby can't turn his head from side to side. Instead, to see around a room, he extends his head back and views the world that way. Another resourceful ending, but one we can't encourage. So, we have exercises to work on his neck muscles. The new direction feels very appropriate - Bobby's learning to face the world with his chin down and his eyes straight ahead while Valerie and I are changing our focus as well, attending to Bobby's future in a world beyond heart defects. It's awkward and exciting for us all.
Bobby doesn't feel well today. We think we may have aggravated his sternum that still needs to finish healing. He's been so active that we probably rushed his recovery a bit. I stayed home from work today and Valerie and I have been exchanging worried phone calls all day. I'm very comfortable now with dealing with symptoms of heart failure - not at all comfortable when he's achy or has a stuffy nose.
We're looking for new daycare, starting the end of next month. It's very difficult - folks are scared away by Bobby's feeding tube, even though, as we tell them, its much less work than bottle feeding. That said we have one option that's logistically challenging but feels like a great fit for Bobby. So we'll continue to look, knowing that we have a safety net. Its very hard to have so many people turning down our wonderful son. The good news - no one seems fazed by his Down Syndrome, just that tube.
We're starting physical, occupational, and speech therapy. In speech, our goal is to get rid that darn tube. Bobby's progressing - what was a horrible oral aversion has become manageable. He's learned to suck on his thumb. His poor muscle tone won't let him keep his hand to his mouth for long, so he's learned to use both arms - one as a brace and the other as the object of his thumb sucking desire. I love to see the resourcefulness in him.
In Physical and Occupational therapy we're working on his neck extension. Again because of muscle tone issues, Bobby can't turn his head from side to side. Instead, to see around a room, he extends his head back and views the world that way. Another resourceful ending, but one we can't encourage. So, we have exercises to work on his neck muscles. The new direction feels very appropriate - Bobby's learning to face the world with his chin down and his eyes straight ahead while Valerie and I are changing our focus as well, attending to Bobby's future in a world beyond heart defects. It's awkward and exciting for us all.
8/2/08
Bobby's Home
Bobby came home this morning. We are very relieved that today was the day - he's so tired of being poked and prodded that he was screaming at even minor procedures. Who can blame him? He got the last of his 3 IV liness out today - this one a central line that went into a vein by his heart. Last night they removed the stitches from the arterial line in his wrist that bled forever when they took it out last week. His chest is still swollen from his broken sternum. His cheek is scratched and raw from the tape that's been on his face to hold various feeding tubes and oxygen support. He's had endless thermometers and stethoscopes waved in front of him, stuck on and in him. Enough is enough. Now, he's asleep in his bassinet, tucked under his own blanket in his own house. It's quiet, it's dark, and it's a relief for all of us.
And an even greater relief? The swayhawk, suffering from little care and Bobby's tough times, is bowed but remains unbroken. We'll be washing it and returning the hawk to its full glory later on - after we give Bobby some time to recover from his debacle.
Thanks to all of you who have supported us these last weeks. It's been a tough time but your thoughts and prayers have seen us through.
And an even greater relief? The swayhawk, suffering from little care and Bobby's tough times, is bowed but remains unbroken. We'll be washing it and returning the hawk to its full glory later on - after we give Bobby some time to recover from his debacle.
Thanks to all of you who have supported us these last weeks. It's been a tough time but your thoughts and prayers have seen us through.
7/30/08
Input and Output
Valerie's early morning report began by telling me that Bobby was up all night trying to poo. He didn't sleep well, which means that she slept even worse. But at least it beats him being up all night struggling to maintain his oxygen.
We're hopefully headed towards an end of week coming home party. Bobby's 4 months old on Sunday and we'd like to celebrate the big .3333 in his own nursery. He needs to go down some more on his oxygen help (he's almost weaned now) and he needs to show he can tolerate his old feeding regimen (we're getting there).
The lingering issue is that he still has fluid on his lungs. He came to the hospital on 1 diuretic and he's going home on 3. We think the difference is that before we were trying to live with the congestive failure. Now we're trying to get rid of the fluid completely. The hospital carefully weighs each and every diaper Bubs has in an effort to see if his output (water leaving his body) is appropriate for his input (food). We're not there yet. But, happily, this won't keep us at the hospital.
We're hopefully headed towards an end of week coming home party. Bobby's 4 months old on Sunday and we'd like to celebrate the big .3333 in his own nursery. He needs to go down some more on his oxygen help (he's almost weaned now) and he needs to show he can tolerate his old feeding regimen (we're getting there).
The lingering issue is that he still has fluid on his lungs. He came to the hospital on 1 diuretic and he's going home on 3. We think the difference is that before we were trying to live with the congestive failure. Now we're trying to get rid of the fluid completely. The hospital carefully weighs each and every diaper Bubs has in an effort to see if his output (water leaving his body) is appropriate for his input (food). We're not there yet. But, happily, this won't keep us at the hospital.
7/29/08
The Tired Mamas Love Their Wiggle Worm
We had a good day today. Bobby had an echocardiogram that came back with good news - his heart functioning is as it should be, given his physiology. He also had an ultrasound which showed that he is only retaining trace fluid in his chest. His right lung, no longer collapsed, is still not working great, but these tests show us that the cause of his problem is probably not serious. He just needs time to heal.
His energy level is much higher than it was before surgery. He is wiggle worming himself into all kinds of precarious positions. This morning I found him with one leg beginning to poke from the bars of the hospital bed. He pulled out his feeding tube in the night (I let the nurse fight that battle). He is mesmerized by the musical mobile the hospital lent us.
Bobby is feeling much much better. Myself, I'm exhausted. Valerie and/or I have been her almost non-stop since last Tuesday morning. The hospital noise and Bobby's crying interspersed with doctor's visits and medical procedures is a lot to manage. I'm going back to work tomorrow. Valerie went back last week. Our nanny will sit with Bubs during the day. V and I will take turns at night. I think this is all part of Bobby's master plan - to gain energy for himself and drain V and I of our strength. By the weekend, Little Lord Wiggle Worm will have gained control of the checking account and the remote control.
His energy level is much higher than it was before surgery. He is wiggle worming himself into all kinds of precarious positions. This morning I found him with one leg beginning to poke from the bars of the hospital bed. He pulled out his feeding tube in the night (I let the nurse fight that battle). He is mesmerized by the musical mobile the hospital lent us.
Bobby is feeling much much better. Myself, I'm exhausted. Valerie and/or I have been her almost non-stop since last Tuesday morning. The hospital noise and Bobby's crying interspersed with doctor's visits and medical procedures is a lot to manage. I'm going back to work tomorrow. Valerie went back last week. Our nanny will sit with Bubs during the day. V and I will take turns at night. I think this is all part of Bobby's master plan - to gain energy for himself and drain V and I of our strength. By the weekend, Little Lord Wiggle Worm will have gained control of the checking account and the remote control.
7/27/08
Sunday in the ICU
Just a quick update today. Bobby is still retaining too much fluid so his doctors are experimenting with diuretics. He's started eating again, working his way back to his old routine. He lost a little weight last week - totally expected given that he went 3 days with no food. He's very stable, but not ready to move off of his high flow oxygen help.
The best news? Bobby who shows no interest in toys is bonding with Elliot the elephant. We're glad he can find some comfort in his new little toy.
The best news? Bobby who shows no interest in toys is bonding with Elliot the elephant. We're glad he can find some comfort in his new little toy.
7/26/08
Swayhawkin' at the ICU
Bobby continues to progress. His lung collapse is now resolved (yay!), and Bubsy is starting to have more energy. He's even smiling occasionally. The doctors have added an additional diuretic - Diuril - to help with his lingering symptoms of congestive heart failure. He's started his NG tube feeds again, slowly at first, of course. He's off the morphine, and is only taking Tylenol and the occasional Ativan dose for pain / restlessness. After hearing about his great progress during the morning rounds today, I was surprised when the cardiac surgeon said he'll probably be discharged in 4 to 5 days. Four to 5 days? What happened to Sunday (tomorrow) or Monday (in 2 days)? The timetable is never predictable when you're Bubsy Malone.
7/25/08
Bobby's Getting Better
Good news this morning from Children's Memorial - Bobby's lungs look much better so his bronchoscopy is canceled. Instead, we're going to start the process of weaning him off of the oxygen. If that starts off well, he'll get to eat for the first time since Monday night.
Right now, he's laying in his bed, kicking his feet, waving his arms in spite of the IVs, in spite of the soft encasings wrapped around his arms in an attempt to protect the IVs from coming loose. Bobby's playing with his tongue by sticking it half way out of his mouth and waving it around, all the while trying to focus his eyes on the oxygen equipment that arcs from the top of his forehead down into his nostrils. He's started talking again. A lot of what he's communicating doesn't sound very happy, but I'm happy to listen to whatever he has to say. And I'm even happier to see that Bubs is feeling better.
I had a good meeting with the cardiologist yesterday and understand the plan better. We'll still be under close monitoring by doctors, but our timeline for surgery is significantly extended. In 3 months, they will do a cardiac catheritization to see how Bobby's doing and we'll make plans from there. Surgery might happen then or it could be a ways beyond that. As for the kind of surgery? We're just not going to know for a while.
After he's recovered from his big week, we should have a Bobby that feels much better. That and the extended repair timeline means that we need to revise our approach to this living with a heart defect. Instead of our life revolving around Bobby's heart, we need to start branching out, working on his development, playing with him more, leaving the house more, living more of a baby life. We had hoped to do this without the specter of more surgery hanging over us and this will certainly be a little harder for Bobby's fretful mamas, but with Bubsy, we're learning to make adjustments.
Right now, he's laying in his bed, kicking his feet, waving his arms in spite of the IVs, in spite of the soft encasings wrapped around his arms in an attempt to protect the IVs from coming loose. Bobby's playing with his tongue by sticking it half way out of his mouth and waving it around, all the while trying to focus his eyes on the oxygen equipment that arcs from the top of his forehead down into his nostrils. He's started talking again. A lot of what he's communicating doesn't sound very happy, but I'm happy to listen to whatever he has to say. And I'm even happier to see that Bubs is feeling better.
I had a good meeting with the cardiologist yesterday and understand the plan better. We'll still be under close monitoring by doctors, but our timeline for surgery is significantly extended. In 3 months, they will do a cardiac catheritization to see how Bobby's doing and we'll make plans from there. Surgery might happen then or it could be a ways beyond that. As for the kind of surgery? We're just not going to know for a while.
After he's recovered from his big week, we should have a Bobby that feels much better. That and the extended repair timeline means that we need to revise our approach to this living with a heart defect. Instead of our life revolving around Bobby's heart, we need to start branching out, working on his development, playing with him more, leaving the house more, living more of a baby life. We had hoped to do this without the specter of more surgery hanging over us and this will certainly be a little harder for Bobby's fretful mamas, but with Bubsy, we're learning to make adjustments.
7/24/08
Bobby's Better Night
"He's doing remarkably well for only having one good lung." These are the words that greeted me during ICU rounds this morning. I'd say they are words you never want to hear, but I'd rather hear that than be told that Bobby wasn't doing well.
Bubs had a much better night. They started giving him regular doses of morphine and he slept much more restfully. After a day of low oxygen readings, he is now responding very well to his oxygen help. He looks much better. He's breathing much easier.
But that lung is still collapsed. We're keeping the same regimen today and if it's no better tomorrow, he's going to get a bronchoscopy where they'll attempt to suction out the congestion that settles around the collapsed portion of the lung.
In better news, his chest tube comes out later this morning. The tube is inserted into a slit in his chest, just above his ribs, for the purpose of draining excess liquid from the chest. The nurses say older, verbal kids agree that its much more painful than the actual surgical incisions because every movement shifts the tube around inside the chest. Last night Bubsy caught his foot in the part of the tube that hangs out, causing him terrible pain. So we'll all be glad to say goodbye to that.
Bubs had a much better night. They started giving him regular doses of morphine and he slept much more restfully. After a day of low oxygen readings, he is now responding very well to his oxygen help. He looks much better. He's breathing much easier.
But that lung is still collapsed. We're keeping the same regimen today and if it's no better tomorrow, he's going to get a bronchoscopy where they'll attempt to suction out the congestion that settles around the collapsed portion of the lung.
In better news, his chest tube comes out later this morning. The tube is inserted into a slit in his chest, just above his ribs, for the purpose of draining excess liquid from the chest. The nurses say older, verbal kids agree that its much more painful than the actual surgical incisions because every movement shifts the tube around inside the chest. Last night Bubsy caught his foot in the part of the tube that hangs out, causing him terrible pain. So we'll all be glad to say goodbye to that.
7/23/08
Bubsy's Rough Night
We had a tough night here at Children's Memorial. Bubs' oxygen levels kept dropping below acceptable levels. He's been on supplemental oxygen since yesterday evening and that didn't seem to help. After an early morning chest x-ray his doctors discovered that part of his right lung is collapsed - a not uncommon result of being intubated.
As we're learning, a lung collapse is serioius, but not emergent. The collapse keeps him from taking big breaths and thus compromises his oxygen levels. The treatment is some therapy - pounding a disc on the colllapsed area of his lungs in order to open up the air sacs, and lots and lots of oxygen help.
Right now, Bobby's on a special oxygen machine that's one step away from a breathing tube. He hasn't eaten yet and won't eat until he's started breathing on his own - certainly not today but maybe tomorrow. He's on a combination of morphine and ativan to help keep him comfortable. One side effect of all the oxygen is that he has swallowed a bunch of air - his stomach is rock hard from his inflated intestines. When he's awake, he's in extreme pain from trying to pass the gas.
But he's hanging in, as is Bobby's way. The nursing care here is great - so far he's had his own nurse for the entire stay. There are intensive care doctors, respiratory therapists, nurse practioners, cardiologists and surgeons following his case. He's needed the attention.
We're still unraveling the differing doctor's opinions. It seems the different parties are settling on a 3 month timetable for surgery, but that, of course, can always change. In fact, I wouldn't be surprised if it changed by the time I write the next update.
As we're learning, a lung collapse is serioius, but not emergent. The collapse keeps him from taking big breaths and thus compromises his oxygen levels. The treatment is some therapy - pounding a disc on the colllapsed area of his lungs in order to open up the air sacs, and lots and lots of oxygen help.
Right now, Bobby's on a special oxygen machine that's one step away from a breathing tube. He hasn't eaten yet and won't eat until he's started breathing on his own - certainly not today but maybe tomorrow. He's on a combination of morphine and ativan to help keep him comfortable. One side effect of all the oxygen is that he has swallowed a bunch of air - his stomach is rock hard from his inflated intestines. When he's awake, he's in extreme pain from trying to pass the gas.
But he's hanging in, as is Bobby's way. The nursing care here is great - so far he's had his own nurse for the entire stay. There are intensive care doctors, respiratory therapists, nurse practioners, cardiologists and surgeons following his case. He's needed the attention.
We're still unraveling the differing doctor's opinions. It seems the different parties are settling on a 3 month timetable for surgery, but that, of course, can always change. In fact, I wouldn't be surprised if it changed by the time I write the next update.
7/22/08
Bobby's Surgery Update
Bobby is fine - resting in the ICU and battling to have his breathing tube removed. Hopefully that will happen later today.
However, Bobby's heart is still not fixed. After opening him up and performing some additional tests, the doctors decided that his left ventricle is to small for the planned repair. They instead put a band around Bobby's pulmonary artery. The band lessens the symptoms of congestive heart failure and buys time for Plan B to be figured out.
But here's where it gets tricky. Our surgeon told us we would wait 6-9 months in the hopes that the ventricle would grow. At that point, we'd either decide to do the 2-ventricle repair or move to our second option - rerouting his blood flow so that blood from his body bypasses the heart and flows directly to the lungs.
Our cardiologist, the same heart doctor Bobby regularly sees, told us that the 2 ventricle repair was unlikely, because of the left ventricle and because he has a problem with his mitral valve. With the 2 ventricle repair off the table, we'd only wait 6-8 weeks for the second kind of surgery.
We're not happy. Obviously, we're not happy that Bobby still has a bum heart. We have no idea what to do in terms of Bobby's day care - do we come up with a 6 week or 6 month plan? We wonder how long we can hold off on his physical and developmental therapy and still hope that he can catch up. And we're simply angry that we're being told very different stories by our doctors. Our cardiologist promised to resolve this tomorrow so now we're in a holding pattern, waiting with Bobby, trying to feed him only the most positive energy.
The good news? Bobby is recovering nicely so far. He has an incision down the middle of his chest and a broken sternum. He'll hopefully be home by the weekend.
Better news? While not a fix, the pulmonary band will make Bobby feel better while we decide what comes next.
The best news? We still have options. While this was a very disappointing bump in the road, it's not the end of the world. The next surgery will come and we will have a healthier Bobby. It's just not today.
However, Bobby's heart is still not fixed. After opening him up and performing some additional tests, the doctors decided that his left ventricle is to small for the planned repair. They instead put a band around Bobby's pulmonary artery. The band lessens the symptoms of congestive heart failure and buys time for Plan B to be figured out.
But here's where it gets tricky. Our surgeon told us we would wait 6-9 months in the hopes that the ventricle would grow. At that point, we'd either decide to do the 2-ventricle repair or move to our second option - rerouting his blood flow so that blood from his body bypasses the heart and flows directly to the lungs.
Our cardiologist, the same heart doctor Bobby regularly sees, told us that the 2 ventricle repair was unlikely, because of the left ventricle and because he has a problem with his mitral valve. With the 2 ventricle repair off the table, we'd only wait 6-8 weeks for the second kind of surgery.
We're not happy. Obviously, we're not happy that Bobby still has a bum heart. We have no idea what to do in terms of Bobby's day care - do we come up with a 6 week or 6 month plan? We wonder how long we can hold off on his physical and developmental therapy and still hope that he can catch up. And we're simply angry that we're being told very different stories by our doctors. Our cardiologist promised to resolve this tomorrow so now we're in a holding pattern, waiting with Bobby, trying to feed him only the most positive energy.
The good news? Bobby is recovering nicely so far. He has an incision down the middle of his chest and a broken sternum. He'll hopefully be home by the weekend.
Better news? While not a fix, the pulmonary band will make Bobby feel better while we decide what comes next.
The best news? We still have options. While this was a very disappointing bump in the road, it's not the end of the world. The next surgery will come and we will have a healthier Bobby. It's just not today.
7/19/08
The Swayhawk Kid
We're in the home stretch now - only 3 more days until Bobby's surgery. Valerie says it feels surreal; I feel numb; Bobby is unconcerned. We take him in Monday for a long series of tests - blood work, echocardiogrm, etc. Tuesday morning we're back for early morning surgery.
We had another emergency room visit/hospital stay last week. Bobby's chest was congested so we went in for an xray and found that, sure enough, he had extra fluid on his lungs. One day and a couple of Lasix IVs later, he came home feeling much better.
Bobby is so much fun to be with. He's started baby talking a mile a minute (like his Mama V. :) and kicking up a storm during bath time. We've even taken him in to the big person bathtub a couple of times- something he loves. His spark is getting brighter every day.
Through these first months, the outward sign of this outgoing, funloving boy has been his mohawk. It started out as some hair sprouts on the top of his head and then extended front to back into a full hawk even a professional wrestler would be proud to call his own. Now its starting to bend to one side of his head. No longer a straight line, its organizing into a semi circle, still waving proudly in the wind. His mohawk has become a swayhawk.
That hair has grown over the course of 4 hospitalizations. When he stopped growing, stopped gaining weight, his hair got longer and stood up even straighter. That hair has helped defined his persona during these early months - to the nurses at the hospital he is Bobby with the mohawk. It draws people to him. It's the hawk that can't be stopped. And when I start to get scared about this Tuesday I think about that hair. It just seems to me that open heart surgery is nothing to the Swayhawk Kid.
We had another emergency room visit/hospital stay last week. Bobby's chest was congested so we went in for an xray and found that, sure enough, he had extra fluid on his lungs. One day and a couple of Lasix IVs later, he came home feeling much better.
Bobby is so much fun to be with. He's started baby talking a mile a minute (like his Mama V. :) and kicking up a storm during bath time. We've even taken him in to the big person bathtub a couple of times- something he loves. His spark is getting brighter every day.
Through these first months, the outward sign of this outgoing, funloving boy has been his mohawk. It started out as some hair sprouts on the top of his head and then extended front to back into a full hawk even a professional wrestler would be proud to call his own. Now its starting to bend to one side of his head. No longer a straight line, its organizing into a semi circle, still waving proudly in the wind. His mohawk has become a swayhawk.
That hair has grown over the course of 4 hospitalizations. When he stopped growing, stopped gaining weight, his hair got longer and stood up even straighter. That hair has helped defined his persona during these early months - to the nurses at the hospital he is Bobby with the mohawk. It draws people to him. It's the hawk that can't be stopped. And when I start to get scared about this Tuesday I think about that hair. It just seems to me that open heart surgery is nothing to the Swayhawk Kid.
7/1/08
July 22nd is Our New Surgery Date
We found out yesterday that Bobby will have his surgery on July 22nd. The doctors don't have any new concerns - our cardiologist just wasn't happy with the original July 31st date so she pushed for something earlier.
It's a little scary, for sure. July 31st seemed like forever and a day from now. July 22nd is 3 weeks from today.
In less scary news, Bubs has broken the 5 kilo mark, which was the weight our doctor was shooting for. That's 11 pounds, 3 oz for us non metric-ized folks. He also slept from 9 pm until 5:30 am this morning. That's just a little something for us.
Three weeks to go isn't very long, so I'd ask on his behalf that you send extra prayers and good energy his way. Today he is struggling with a 90 breath per minute pace. Four weeks from today, that should be cut in half.
It's a little scary, for sure. July 31st seemed like forever and a day from now. July 22nd is 3 weeks from today.
In less scary news, Bubs has broken the 5 kilo mark, which was the weight our doctor was shooting for. That's 11 pounds, 3 oz for us non metric-ized folks. He also slept from 9 pm until 5:30 am this morning. That's just a little something for us.
Three weeks to go isn't very long, so I'd ask on his behalf that you send extra prayers and good energy his way. Today he is struggling with a 90 breath per minute pace. Four weeks from today, that should be cut in half.
6/30/08
Bobby and the Technicolor Diaper
OK...it's getting harder to come up with good titles for these things.
It's been a quiet week here as we settle into a new routine of Valerie being back at work. We're very happy with Bobby's new care giver. She holds him for most of the day, which is really all he wants out of life. Synthia won me over when I asked her, "do you ever notice that Bobby looks a little smug when he cries and gets you to pick him up?"
"I sure do," she said. "Don't let them tell you that little brain ain't working; that little brain is working fine."
Yes, Bobby has us wrapped around his fingers. And, Bobby continues to grow. He's now a couple of ounces shy of eleven pounds, meaning I only have a week to come up with an alliteration to eleven that means handsome and robust around the waistline.
Not that Bobby is as big as the pictures might lead you to believe. Oh, his weight is outpacing his length for sure - that's what the feeding tube is designed to do. We need him to be as big as possible for the surgery so we keep him on a high calorie diet. An ounce of breast milk or baby formula is typically 20 calories. We add vegetable oil and extra powder to Bobby's meals so that he is eating at a 30 calorie per ounce clip. It's hard on him - he often gets too full and struggles to get through his meals, but it's a necessary evil for now.
With all of that, Bobby's weight is in the 5th percentile for typical children his age. He's not long enough to even show up on the growth charts. Part of this is likely due to his heart defect - his breathing takes an inordinate amount of energy which in turn takes energy away from other parts of his development. But, the reality is, Bobby is just going to be a little guy.
The average height of a Ds adult male is 5 feet 3 inches. In fact, the growth patterns for Ds kids are so different from typical children that they have their own set of charts. On the Ds chart Bobby is in the 50th percentile for weight and just above the 25th percentile for height. So, while the heart surgery may be stunting his growth a bit, we're not raising a center or a power forward.
Which doesn't matter. Any child of ours is going to want to run the team from the point anyway. Or maybe he won't like basketball at all. Maybe he'll be a third baseman, or a goalie or some ice hockey related position that he'll have to explain to me. That's for Bobby to figure out.
It's been a quiet week here as we settle into a new routine of Valerie being back at work. We're very happy with Bobby's new care giver. She holds him for most of the day, which is really all he wants out of life. Synthia won me over when I asked her, "do you ever notice that Bobby looks a little smug when he cries and gets you to pick him up?"
"I sure do," she said. "Don't let them tell you that little brain ain't working; that little brain is working fine."
Yes, Bobby has us wrapped around his fingers. And, Bobby continues to grow. He's now a couple of ounces shy of eleven pounds, meaning I only have a week to come up with an alliteration to eleven that means handsome and robust around the waistline.
Not that Bobby is as big as the pictures might lead you to believe. Oh, his weight is outpacing his length for sure - that's what the feeding tube is designed to do. We need him to be as big as possible for the surgery so we keep him on a high calorie diet. An ounce of breast milk or baby formula is typically 20 calories. We add vegetable oil and extra powder to Bobby's meals so that he is eating at a 30 calorie per ounce clip. It's hard on him - he often gets too full and struggles to get through his meals, but it's a necessary evil for now.
With all of that, Bobby's weight is in the 5th percentile for typical children his age. He's not long enough to even show up on the growth charts. Part of this is likely due to his heart defect - his breathing takes an inordinate amount of energy which in turn takes energy away from other parts of his development. But, the reality is, Bobby is just going to be a little guy.
The average height of a Ds adult male is 5 feet 3 inches. In fact, the growth patterns for Ds kids are so different from typical children that they have their own set of charts. On the Ds chart Bobby is in the 50th percentile for weight and just above the 25th percentile for height. So, while the heart surgery may be stunting his growth a bit, we're not raising a center or a power forward.
Which doesn't matter. Any child of ours is going to want to run the team from the point anyway. Or maybe he won't like basketball at all. Maybe he'll be a third baseman, or a goalie or some ice hockey related position that he'll have to explain to me. That's for Bobby to figure out.
6/22/08
Bobby's New Beginning
We finally have a surgery day to look forward to/worry about. Bobby's heart will be fixed on July 31st. He'll be one day shy of 17 weeks old.
In all honesty, we were hoping for a quicker date. His breathing is getting worse and he is often very uncomfortable. Plus, we just want to be able to move forward and focus on something new. That said, it's good news that the doctors believe he can wait another 6 weeks. We also have the chance to put another 2-3 pounds on him, which can only improve his chances of doing well.
Valerie goes back to work this Thursday. We're both anxious about leaving him - it's been so much easier for me to go to work knowing that Bobby was with Valerie. But, we have what we believe will be a wonderful option for Bobby. Synthia is a baby expert who has been taking care of kids longer than I've been alive. She's worked with special needs babies before, in fact she had one herself. When she holds Bobby he gazes at her as if to say 'Hi beautiful lady who knows what she's doing. Where the heck have you been?'
On the Bobby front, he's mostly about getting bigger and dealing with the heart problems. But he has also started an amazing new phase of baby talking. Valerie and I both talk to him non stop and he is rewarding us with a series of coos and one high pitched greeting that sounds like a drawn out 'hi', though maybe what's he's really saying is 'Can you mamas please stop talking so much? A boy needs his rest.' Who knows? It's all such a beautiful mystery.
In all honesty, we were hoping for a quicker date. His breathing is getting worse and he is often very uncomfortable. Plus, we just want to be able to move forward and focus on something new. That said, it's good news that the doctors believe he can wait another 6 weeks. We also have the chance to put another 2-3 pounds on him, which can only improve his chances of doing well.
Valerie goes back to work this Thursday. We're both anxious about leaving him - it's been so much easier for me to go to work knowing that Bobby was with Valerie. But, we have what we believe will be a wonderful option for Bobby. Synthia is a baby expert who has been taking care of kids longer than I've been alive. She's worked with special needs babies before, in fact she had one herself. When she holds Bobby he gazes at her as if to say 'Hi beautiful lady who knows what she's doing. Where the heck have you been?'
On the Bobby front, he's mostly about getting bigger and dealing with the heart problems. But he has also started an amazing new phase of baby talking. Valerie and I both talk to him non stop and he is rewarding us with a series of coos and one high pitched greeting that sounds like a drawn out 'hi', though maybe what's he's really saying is 'Can you mamas please stop talking so much? A boy needs his rest.' Who knows? It's all such a beautiful mystery.
6/14/08
Ten Pound Tubster
The big news in our house today is that Bobby now weighs over 10 pounds - quite an accomplishment for a baby who struggled to gain any weight just over a month ago. For now, most of the weight gain appears to be in his cheeks and tummy. We're hoping that eventually evens out.
This Wednesday we will find out the date for his heart surgery. After more consultations, it seems that our risk of having to do the more complicated repair is higher than we believed in the last entry. Still, complicated or no, it should work and should allow Bobby to have an active life.
He is definitely feeling the weight of his heart failure these days. He's sleeping less, needing comfort more. The first hot days of summer were very hard for him. That seems to have improved now that we've lowered the dosage on his diuretic, installed our air conditioners for the season, and bought him a bunch of cutie new summer clothes. Our 10 week baby wears a size newborn pant, is close to belly busting out of a 0-3 month shirt and needs a preemie sun hat. Again, we're hoping that eventually evens out.
Speaking of head sizes, our pediatrician mentioned at our 2 month visit that Bobby's head was growing slower than normal which might indicate a problem with brain development. Of course, that scared us both, led me to spend hours reading about microencephaly, and fed right into our fears that Bobby has one of the more severe cases of Ds, meaning slower development and less upside. At the next visit, we asked about this again and our pediatrician said 'Did I say that? I'm sorry. That measurement was an outlier." We love our pediatrician - she has been wonderfully involved in Bobby's care and is our most trusted resource. Yet at that moment, I wanted to scream. Just another lesson, I think, that we need to keep focused on the long run and not worry about the day to day bumps in the road.
This Wednesday we will find out the date for his heart surgery. After more consultations, it seems that our risk of having to do the more complicated repair is higher than we believed in the last entry. Still, complicated or no, it should work and should allow Bobby to have an active life.
He is definitely feeling the weight of his heart failure these days. He's sleeping less, needing comfort more. The first hot days of summer were very hard for him. That seems to have improved now that we've lowered the dosage on his diuretic, installed our air conditioners for the season, and bought him a bunch of cutie new summer clothes. Our 10 week baby wears a size newborn pant, is close to belly busting out of a 0-3 month shirt and needs a preemie sun hat. Again, we're hoping that eventually evens out.
Speaking of head sizes, our pediatrician mentioned at our 2 month visit that Bobby's head was growing slower than normal which might indicate a problem with brain development. Of course, that scared us both, led me to spend hours reading about microencephaly, and fed right into our fears that Bobby has one of the more severe cases of Ds, meaning slower development and less upside. At the next visit, we asked about this again and our pediatrician said 'Did I say that? I'm sorry. That measurement was an outlier." We love our pediatrician - she has been wonderfully involved in Bobby's care and is our most trusted resource. Yet at that moment, I wanted to scream. Just another lesson, I think, that we need to keep focused on the long run and not worry about the day to day bumps in the road.
5/31/08
Bobby Bear's Heart Repair
This week we focused on getting ready for Bobby's surgery. Tuesday he had a sedated MRI and echocardiogram. This procedure was necessary because the physiology of his heart isn't ideal for a standard AV Canal repair. The doctors needed more information to decide what to do next.
We had a surgical consult on Friday, where we found out their verdict. It turns out that he's got a very high likelihood of having the standard surgery - about 90%. If for some reason that repair doesn't work they will know while he's still on the operating table and they and will start work on the backup plan.
To understand the surgeries you just need to remember the primary job of the heart - take in blood from the body and send it to the lungs to be oxygenated. Then, take in oxygenated blood from the lungs and send that to the rest of the body.
Right now, Bobby has a big hole that prevents these two functions from being separate. Blood that's been to his lungs sloshes into the wrong ventricle and gets sent back to the lungs instead of out to his body. The whole process is really inefficient so his lungs have to work overtime to keep his oxygen at acceptable levels.
The traditional surgery, the one Bobby likely will have, involves putting a couple of patches on his heart to close the holes. In addition, and this is the tricky part, he also currently has only one valve sending blood from his atria to his 2 ventricles. He needs separate valves. However, the doctors are a little concerned that Bobby doesn't have enough tissue to do the job correctly. If this happens, we have a second option.
This second option doesn't involve a repair of the heart. Instead, the doctors will relieve the heart of one of its two functions. Over the course of two separate surgeries - one as an infant and one when he's three - the upper and lower arteries that feed the heart would be detoured so that they bypass the heart and flow directly into the lungs. The heart then would only have one job - to take blood from the lungs and pump it into the body.
Both surgeries have very positive outcomes. Less is known about the long term viability of the second, simply because the surgery has only been around 20-30 years so they have no data on what happens when folks get older.
In terms of success rates - since 2000, the doctors of our hospital have performed just over 60 traditional AV Canal repairs. Only one child failed to survive, and this child died months later of an unrelated liver failure. The surgeons are very obviously proud of this statistic - one we will be more than happy to add to. Otherwise, the most serious risk of this surgery is that one of the valves will leak and have to be repaired with Bobby is older; more common but less severe problems can occur if Bobby develops an infection as the result of the surgery. These infections slow recovery but don't have long term repercussions.
As I mentioned, less is known about the second kind of surgery but it's success rate is also very high. The survival rate is 94% and Bobby should be able to have a normal activity level after the surgery.
So we're feeling good. Our timeline has been moved from the original 3 month mark to somewhere around 4 months. The side effects of Bobby's heart failure are fairly well under control so, unless that changes, we're going to let him grow for a month longer before surgery.
We had a surgical consult on Friday, where we found out their verdict. It turns out that he's got a very high likelihood of having the standard surgery - about 90%. If for some reason that repair doesn't work they will know while he's still on the operating table and they and will start work on the backup plan.
To understand the surgeries you just need to remember the primary job of the heart - take in blood from the body and send it to the lungs to be oxygenated. Then, take in oxygenated blood from the lungs and send that to the rest of the body.
Right now, Bobby has a big hole that prevents these two functions from being separate. Blood that's been to his lungs sloshes into the wrong ventricle and gets sent back to the lungs instead of out to his body. The whole process is really inefficient so his lungs have to work overtime to keep his oxygen at acceptable levels.
The traditional surgery, the one Bobby likely will have, involves putting a couple of patches on his heart to close the holes. In addition, and this is the tricky part, he also currently has only one valve sending blood from his atria to his 2 ventricles. He needs separate valves. However, the doctors are a little concerned that Bobby doesn't have enough tissue to do the job correctly. If this happens, we have a second option.
This second option doesn't involve a repair of the heart. Instead, the doctors will relieve the heart of one of its two functions. Over the course of two separate surgeries - one as an infant and one when he's three - the upper and lower arteries that feed the heart would be detoured so that they bypass the heart and flow directly into the lungs. The heart then would only have one job - to take blood from the lungs and pump it into the body.
Both surgeries have very positive outcomes. Less is known about the long term viability of the second, simply because the surgery has only been around 20-30 years so they have no data on what happens when folks get older.
In terms of success rates - since 2000, the doctors of our hospital have performed just over 60 traditional AV Canal repairs. Only one child failed to survive, and this child died months later of an unrelated liver failure. The surgeons are very obviously proud of this statistic - one we will be more than happy to add to. Otherwise, the most serious risk of this surgery is that one of the valves will leak and have to be repaired with Bobby is older; more common but less severe problems can occur if Bobby develops an infection as the result of the surgery. These infections slow recovery but don't have long term repercussions.
As I mentioned, less is known about the second kind of surgery but it's success rate is also very high. The survival rate is 94% and Bobby should be able to have a normal activity level after the surgery.
So we're feeling good. Our timeline has been moved from the original 3 month mark to somewhere around 4 months. The side effects of Bobby's heart failure are fairly well under control so, unless that changes, we're going to let him grow for a month longer before surgery.
5/21/08
Bobby Bear's back where he belongs
Bobby's hospital adventures have come to an end, hopefully until his surgery. It wasn't easy. We spent 10 days experimenting with heart medication and diets and were almost ready to go home when Bobby started having mysterious temperature spikes. As is the protocol with young infants, the hospital did blood and urine cultures and a spinal tap. All were negative so they cut us loose even though he was still having the fevers. We've spent the last week working with our pediatrician trying to figure out the problem. More blood tests and more sticks of the needle haven't revealed any major infection. Fortunately, the spikes are becoming less frequent and less severe so we hope that they will soon be a thing of the past.
In keeping with our family traditions, Bobby hasn't allowed his fevers to stop him from gaining weight. Since we hit upon the right type and frequency of formula, he has blossomed from 7 lbs 6 oz to 8 lbs 12 oz in just under two weeks. All this after having been stalled for the three weeks before then.
We're thrilled to have Bobby at home. Its sometimes scary - two days after he was released we were back in the emergency room because his respiration rate was above 100. The doctors have explained that we will just have to live with some of these moments between now and the surgery. Still, now that we're home we can appreciate some of his development. He can now maintain eye contact for short periods of time. He gives us small smiles. He loves his light projection toy - cooing and waving his arms at the light patterns we project on the wall.
His first Early Intervention assessment was Wednesday. EI is a state sponsored program that sends speech/physical/occupational/developmental therapists into the home of special needs kids. Until Bobby is 3, we will have access to these home visits with financial coverage being provided first by our insurance and, if and when that runs out, largely subsidized by the state.
The visit was a little difficult - already Bobby is getting scored. His cognition is at a 2 week level, his movement at a 1 month level, etc. It's tough to hear those numbers and know that we'll be hearing different versions of them for the rest of his childhood. For now, Bobby will receive speech/feeding therapy. The other areas will wait until after his heart surgery. As the therapists reminded us, no child with heart failure develops on schedule. We won't be able to make big gains with Bobby until his surgery.
So, lastly, what about that surgery? Tomorrow Bobby is going to be sedated while he gets an MRI and echocardiogram. These tests are necessary to ensure that the surgeons have the most precise measurements possible. We then have our surgical consult this Friday. After that we'll know a lot more about what the next few weeks hold.
Thanks to all of you for your support over these weeks. 7 weeks down. In another 7, we'll hopefully have a heart healthy baby.
In keeping with our family traditions, Bobby hasn't allowed his fevers to stop him from gaining weight. Since we hit upon the right type and frequency of formula, he has blossomed from 7 lbs 6 oz to 8 lbs 12 oz in just under two weeks. All this after having been stalled for the three weeks before then.
We're thrilled to have Bobby at home. Its sometimes scary - two days after he was released we were back in the emergency room because his respiration rate was above 100. The doctors have explained that we will just have to live with some of these moments between now and the surgery. Still, now that we're home we can appreciate some of his development. He can now maintain eye contact for short periods of time. He gives us small smiles. He loves his light projection toy - cooing and waving his arms at the light patterns we project on the wall.
His first Early Intervention assessment was Wednesday. EI is a state sponsored program that sends speech/physical/occupational/developmental therapists into the home of special needs kids. Until Bobby is 3, we will have access to these home visits with financial coverage being provided first by our insurance and, if and when that runs out, largely subsidized by the state.
The visit was a little difficult - already Bobby is getting scored. His cognition is at a 2 week level, his movement at a 1 month level, etc. It's tough to hear those numbers and know that we'll be hearing different versions of them for the rest of his childhood. For now, Bobby will receive speech/feeding therapy. The other areas will wait until after his heart surgery. As the therapists reminded us, no child with heart failure develops on schedule. We won't be able to make big gains with Bobby until his surgery.
So, lastly, what about that surgery? Tomorrow Bobby is going to be sedated while he gets an MRI and echocardiogram. These tests are necessary to ensure that the surgeons have the most precise measurements possible. We then have our surgical consult this Friday. After that we'll know a lot more about what the next few weeks hold.
Thanks to all of you for your support over these weeks. 7 weeks down. In another 7, we'll hopefully have a heart healthy baby.
5/9/08
Bobby Bobba-Loop's Hospital Adventures
It's been a rough 5 weeks since Bobby was born (he's been in the hospital for 3 of those 5 weeks)... As Anne's last entry discusses, his latest hospitalization started last Thursday (5/1) with symptoms of congestive heart failure (rapid breathing, fluid on the lungs) and poor feeding. We're both exhausted from being at his bedside 24x7, frustrated with Children's Memorial, and not really any closer to discharge.
Shortly after he was admitted to the hospital, the doctors decided that Bobby needed a feeding tube (nasogastric - NG tube), and we were very hopeful that it would solve the feeding issues, but this has not been the case. Instead, he's having problems with food volume, gagging, vomiting, continued excessively rapid breathing, etc. Even the hospital has not been successful at getting him to gain weight... he's the same weight now as he was when he was admitted there (3.38 kg = 7 lbs 7 oz). So, in an effort to give ourselves some respite, we've opted to have a nanny pull the night shift for us at his bedside a couple of nights next week, and Children's has finally (and graciously) offered to loan us a nursing assistant for a few hours, for a couple of nights, too, so we can get some sleep. Bobby's on a telemetry unit at Children's and not the ICU, and in my opinion, they have a really poor policy on how frequently they check on their kids on telemetry... the nurses are only required to do checks every 4 hours. Which means, Bobby might be vomitting from his feeding tube and no one would know it until the next time the nurse checked on him, perhaps 4 hours later. For this reason, we feel like someone needs to be there all the time, since clearly their staff won't be. Frustrating!
Anyways, Bobby's on 3 different heart meds now (2 diuretics and Digoxin), and if we can get some weight on him, hopefully he'll be able to have his heart repair done when he's 3 or 4 months old. That should resolve most, if not all, of the breathing, lung fluid and eating issues we're seeing. Hopefully the three of us can hang in there until then! We're very lucky he's such a forgiving, patient, wonderful little baby, because in addition to the medical stuff going on with him, we're still new parents and are still learning how to take care of our first child!
For now, we're taking things one day at a time. :-)
Shortly after he was admitted to the hospital, the doctors decided that Bobby needed a feeding tube (nasogastric - NG tube), and we were very hopeful that it would solve the feeding issues, but this has not been the case. Instead, he's having problems with food volume, gagging, vomiting, continued excessively rapid breathing, etc. Even the hospital has not been successful at getting him to gain weight... he's the same weight now as he was when he was admitted there (3.38 kg = 7 lbs 7 oz). So, in an effort to give ourselves some respite, we've opted to have a nanny pull the night shift for us at his bedside a couple of nights next week, and Children's has finally (and graciously) offered to loan us a nursing assistant for a few hours, for a couple of nights, too, so we can get some sleep. Bobby's on a telemetry unit at Children's and not the ICU, and in my opinion, they have a really poor policy on how frequently they check on their kids on telemetry... the nurses are only required to do checks every 4 hours. Which means, Bobby might be vomitting from his feeding tube and no one would know it until the next time the nurse checked on him, perhaps 4 hours later. For this reason, we feel like someone needs to be there all the time, since clearly their staff won't be. Frustrating!
Anyways, Bobby's on 3 different heart meds now (2 diuretics and Digoxin), and if we can get some weight on him, hopefully he'll be able to have his heart repair done when he's 3 or 4 months old. That should resolve most, if not all, of the breathing, lung fluid and eating issues we're seeing. Hopefully the three of us can hang in there until then! We're very lucky he's such a forgiving, patient, wonderful little baby, because in addition to the medical stuff going on with him, we're still new parents and are still learning how to take care of our first child!
For now, we're taking things one day at a time. :-)
5/4/08
More Hospital
Today is Bobby's one month birthday. Unfortunately, we had to put the cake and ice cream on hold because Bubba is back in the hospital. He was admitted for a fast respiratory rate and difficulty in gaining weight.
The respiration problem was diagnosed in the emergency room - he has fluid on his lungs. This is expected and treatable. In fact, the doctors have already found the combination of drugs that will keep his condition under control while he gets bigger.
Two consultations with the hospital feeding specialist identified our problems there. Bobby can't drink breast milk from a bottle - it's too thin and he can't swallow fast enough to keep it from flooding his mouth. So, he's now on formula by day and fortified breast milk via a nasal gastric tube by night. He's gained 4 ounces since Thursday night, the same amount he'd gained in the last 2 weeks. He's 7 lbs 11 oz now. Our surgery goal is 11 lbs.
He continues to be a good sport through all the poking and prodding, although we're testing his limits as we practice the insertion and removal of the feeding tube. His sweetness draws everyone close to him. The hospitalization is hard on us all but it's been a blessing to make so much progress in just a few days. We look forward to him blowing out the candles on his real birthday cake 11 months from now.
The respiration problem was diagnosed in the emergency room - he has fluid on his lungs. This is expected and treatable. In fact, the doctors have already found the combination of drugs that will keep his condition under control while he gets bigger.
Two consultations with the hospital feeding specialist identified our problems there. Bobby can't drink breast milk from a bottle - it's too thin and he can't swallow fast enough to keep it from flooding his mouth. So, he's now on formula by day and fortified breast milk via a nasal gastric tube by night. He's gained 4 ounces since Thursday night, the same amount he'd gained in the last 2 weeks. He's 7 lbs 11 oz now. Our surgery goal is 11 lbs.
He continues to be a good sport through all the poking and prodding, although we're testing his limits as we practice the insertion and removal of the feeding tube. His sweetness draws everyone close to him. The hospitalization is hard on us all but it's been a blessing to make so much progress in just a few days. We look forward to him blowing out the candles on his real birthday cake 11 months from now.
4/26/08
The Zen of Bobby
Bobby continues to do pretty well with his heart condition. Feeding times are becoming more labored as he loses his breath and tires out. So far, the Lasix has not helped so the doctor put him on a higher dose yesterday. Sometime in May, we expect that we'll start the drug Digoxin. Digoxin increases the strength of the contractions in his heart, helping things work a little more efficiently.
All of these medications are geared towards one real goal - keeping Bobby strong enough to gain weight over the next couple of months. He continues to get bigger, although not as quickly as he did in the early days. We continue to experiment with feeding positions, burping positions, timing of feedings, etc. trying to give him the best possible dining experience.
We also had our first meeting with Early intervention yesterday. In a couple of weeks, we'll get a visit from physical, speech, development, and occupational therapists. They'll help us identify where Bobby needs some extra help and where outside therapy might help.
So far, the idea of Down Syndrome is still mostly an idea. We have no idea how he's impacted now or where we're headed. He seems pretty magical to us.
When we first found out last year that he was likely to have Ds, we were devestated. I spent days crying, wondering what the future held for him and us. Would he ever fall in love? Would he always live with us? Would he ever hold a job?
These days, worries about his heart condition block out any concerns about what happens beyond this summer.
Worries about bulking him up for his surgery and the constant struggles to find a good feeding groove leave us with little time or energy to obsess about the surgery.
The battle with his incessant gas and constipation that slows his food intake fill the spaces between feeding schedules. Last night I spent eight hours comforting him as he shifted and strained. Minute by minute, I held him, desperate for him to go to sleep, sniffing the air anxiously for signs that he'd gone to the bathroom. When, at 2:00 am, I opened his diaper to find a pile of poo, I was nearly beside myself with happiness.
In three weeks, he's taken me from extreme anxiety about 20 years into the future to a early morning moment of pure joy over the tiny victory he and I shared. What a cool kid.
All of these medications are geared towards one real goal - keeping Bobby strong enough to gain weight over the next couple of months. He continues to get bigger, although not as quickly as he did in the early days. We continue to experiment with feeding positions, burping positions, timing of feedings, etc. trying to give him the best possible dining experience.
We also had our first meeting with Early intervention yesterday. In a couple of weeks, we'll get a visit from physical, speech, development, and occupational therapists. They'll help us identify where Bobby needs some extra help and where outside therapy might help.
So far, the idea of Down Syndrome is still mostly an idea. We have no idea how he's impacted now or where we're headed. He seems pretty magical to us.
When we first found out last year that he was likely to have Ds, we were devestated. I spent days crying, wondering what the future held for him and us. Would he ever fall in love? Would he always live with us? Would he ever hold a job?
These days, worries about his heart condition block out any concerns about what happens beyond this summer.
Worries about bulking him up for his surgery and the constant struggles to find a good feeding groove leave us with little time or energy to obsess about the surgery.
The battle with his incessant gas and constipation that slows his food intake fill the spaces between feeding schedules. Last night I spent eight hours comforting him as he shifted and strained. Minute by minute, I held him, desperate for him to go to sleep, sniffing the air anxiously for signs that he'd gone to the bathroom. When, at 2:00 am, I opened his diaper to find a pile of poo, I was nearly beside myself with happiness.
In three weeks, he's taken me from extreme anxiety about 20 years into the future to a early morning moment of pure joy over the tiny victory he and I shared. What a cool kid.
4/21/08
Bobby at Home
Bobby's first week at home has been happily uneventful. His doctor asked us to move him from a one feeding every four hours schedule to a more chubby-friendly 2-3 hours. For his part, Bobby has adapted easily and even helps out by reminding us if we go a little too long between feedings.
He's also started on Lasix, a diuretic that will help with any fluid build up in his lungs. So far his lungs are clear, but he's running out of breath while eating and the drug should help with that. We just started it and don't know know how its going to work for Bobby yet.
Valerie and I are both tired, especially Valerie who is the primary owner of the night shift now that I'm back at work. Bobby is well rested and already showing off. Last week during 'tummy time' he pushed himself from his stomach to his back. This is nearly unheard of at this age, and we're appropriately proud.
To make sure it wasn't a fluke, we've tried putting him on his tummy two other times, and he is now very good at the roll over. Our pediatrician doesn't believe us. We'll be getting out the video recorder soon.
Valerie and I went to Canada to get married a couple of years ago. When we told her 92 year old father that we were going there because 'we didn't have the right to get married here', he rejected our rationale. "What do you mean you don't have the right? You make your own rights."
Valerie and I adopted that as our pep talk to one another when we're feeling put upon. "You make your own rights".
When Bobby rolled tummy to back Valerie got so excited that she kissed him and said "You make your own Down Syndrome".
I think that's our new mantra.
He's also started on Lasix, a diuretic that will help with any fluid build up in his lungs. So far his lungs are clear, but he's running out of breath while eating and the drug should help with that. We just started it and don't know know how its going to work for Bobby yet.
Valerie and I are both tired, especially Valerie who is the primary owner of the night shift now that I'm back at work. Bobby is well rested and already showing off. Last week during 'tummy time' he pushed himself from his stomach to his back. This is nearly unheard of at this age, and we're appropriately proud.
To make sure it wasn't a fluke, we've tried putting him on his tummy two other times, and he is now very good at the roll over. Our pediatrician doesn't believe us. We'll be getting out the video recorder soon.
Valerie and I went to Canada to get married a couple of years ago. When we told her 92 year old father that we were going there because 'we didn't have the right to get married here', he rejected our rationale. "What do you mean you don't have the right? You make your own rights."
Valerie and I adopted that as our pep talk to one another when we're feeling put upon. "You make your own rights".
When Bobby rolled tummy to back Valerie got so excited that she kissed him and said "You make your own Down Syndrome".
I think that's our new mantra.
4/16/08
Bobby Ganoush Finally Comes Home
After 11 long days at Evanston Hospital's neonatal intensive care, Bobby came home to us last night. We are very excited (and just a little sleep deprived) :-)
4/13/08
Bobby's First Week
Bobby has Down Syndrome. There are tons of misconceptions about what that means - we had more than a few when we got the news last year. But we've since learned that nothing is preordained about his life or his potential. We know he will need extra help in his development, but he will achieve the milestones all children make. He will have strengths and weaknesses and loves and dislikes and from those he will construct the future he wants. As long as we help him when he needs help and get out of his way when he needs that, he has every chance to grow old living a happy and fulfilling life.
For now, our biggest concern by far is that Bobby has an AV-canal defect, meaning he has a hole in his heart where he should have tissue separating the 4 chambers. Because of the hole, blood that's been oxygenated by the lungs will not always get properly pumped to the rest of Bobby's body. Instead, the blood will slosh back into the right ventricle and get sent back to his lungs for another cycle. This makes his pulmonary system work extra hard.
Right now, he's in the hospital because, about once or twice a day, usually after a meal, the oxygen saturation in his blood drops to uanacceptable levels. He's breathing on his own the rest of the time. It might be that his lungs haven't completely developed. It might be that he has some acid reflux interfering with his eating. We're watching and waiting. He should be home early next week.
You may know that some holes in the heart heal by themselves. AV-canal defects do not. He will have open heart surgery in about 3 months, depending on how strong he is. In the meantime, we expect to struggle. Right now, Bobby is eating well. As time goes on, he will get weaker and may have trouble keeping his weight. At some point, as his lungs are stretched beyond capacity, he will have some fluid build up in his lungs - the early stage of congestive heart failure. That will have to be controlled by medication.
After his surgery, we should see dramatic changes. As scary as open heart surgery is, it's completely successful in 90%+ of cases. So, we have every reason to be hopeful.
In the meantime we are starting physical therapy to help Bobby build up his core muscles for all the fun that comes after surgery. His muscle tone is a little low so therapy encourages him to move his arms and legs; keeps him from favoring one side of his body over another; and all important for him - helps build the muscles of the neck and upper back. For us, therapy ranges from very fun (massaging his chest so that he grabs our arm) to easy (watching TV while he sleeps on each side for 30 minutes) to difficult (encouraging him to lift his head). Through it all he is good natured and forgiving.
For all the detail above, the reality is that Bobby is thriving in the face of his heart issues. He's eating great. He's mostly holding his own in the oxygenation arena. We're already 1 week down in our 12 week marathon to surgery. We just ask that you pray or think or hope good thoughts for Bobby as we want as much positive energy around him as possible as he navigates this hurdle.
For more information about Down Syndrome check out http://www.nads.org/pages_new/facts.html
For more information about A-V Canal defects go to http://www.americanheart.org/presenter.jhtml?identifier=132
For now, our biggest concern by far is that Bobby has an AV-canal defect, meaning he has a hole in his heart where he should have tissue separating the 4 chambers. Because of the hole, blood that's been oxygenated by the lungs will not always get properly pumped to the rest of Bobby's body. Instead, the blood will slosh back into the right ventricle and get sent back to his lungs for another cycle. This makes his pulmonary system work extra hard.
Right now, he's in the hospital because, about once or twice a day, usually after a meal, the oxygen saturation in his blood drops to uanacceptable levels. He's breathing on his own the rest of the time. It might be that his lungs haven't completely developed. It might be that he has some acid reflux interfering with his eating. We're watching and waiting. He should be home early next week.
You may know that some holes in the heart heal by themselves. AV-canal defects do not. He will have open heart surgery in about 3 months, depending on how strong he is. In the meantime, we expect to struggle. Right now, Bobby is eating well. As time goes on, he will get weaker and may have trouble keeping his weight. At some point, as his lungs are stretched beyond capacity, he will have some fluid build up in his lungs - the early stage of congestive heart failure. That will have to be controlled by medication.
After his surgery, we should see dramatic changes. As scary as open heart surgery is, it's completely successful in 90%+ of cases. So, we have every reason to be hopeful.
In the meantime we are starting physical therapy to help Bobby build up his core muscles for all the fun that comes after surgery. His muscle tone is a little low so therapy encourages him to move his arms and legs; keeps him from favoring one side of his body over another; and all important for him - helps build the muscles of the neck and upper back. For us, therapy ranges from very fun (massaging his chest so that he grabs our arm) to easy (watching TV while he sleeps on each side for 30 minutes) to difficult (encouraging him to lift his head). Through it all he is good natured and forgiving.
For all the detail above, the reality is that Bobby is thriving in the face of his heart issues. He's eating great. He's mostly holding his own in the oxygenation arena. We're already 1 week down in our 12 week marathon to surgery. We just ask that you pray or think or hope good thoughts for Bobby as we want as much positive energy around him as possible as he navigates this hurdle.
For more information about Down Syndrome check out http://www.nads.org/pages_new/facts.html
For more information about A-V Canal defects go to http://www.americanheart.org/presenter.jhtml?identifier=132
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