3/31/09
3/30/09
The Final Countdown
Well, we're almost there - we've almost made it through Bobby's first year of life. He was born 4/4/08 at 7:07 am and weighed 6 lbs and 12 oz. If that's not being born on a numerically lucky star, I don't know what is.
His at home recuperation is going great. He got partially weaned from his oxygen last Wednesday and I have high hopes that he will be off of it completely after his Wednesday check up with surgery.
He's gaining some weight after basically holding steady during his month in the hospital. The continuous feeds are awkward, but its so nice for him and us that he doesn't get sick all the time anymore. Some days he actually wears the same outfit all day. We met with his GI doctor last week who formally recommended a g-tube. We knew that was coming. Our big decision is around whether or not he gets a nissen fundoplication. This procedure tightens the sphincter that connects the stomach and the esophagus, preventing reflux. If not done well, it can also cause long term problems. We have a meeting with a surgeon later in April to discuss the pros and cons. The g-tube will hopefully come in May.
Therapy has slowly restarted. He's doing tummy time and some simple exercises to help him gain his strength back. He's siting up nicely in his booster chair.
We had some issues last week with him not sleeping well. Valerie and I each spent a couple of nights getting little to no sleep. The surgery APN told us that it was an adjustment issue with being out of the hospital, that he was used to the stimulation of being in the ICU. Whatever it was, it was wicked. Things are getting better on that front as he's back to sleeping until 6 or 7 am.
Bobby has also developed a very crabby side to his otherwise perfect disposition. He screams if he gets put down when he wants to be held. Really screams. Its the first time we've had to really grit our teeth and let him cry. I know it's normal. I just somehow hoped we'd get a pass on some of the normal parenting trials, given that we've had some unique ones to overcome. But, given who his parents are, there was really no chance we were going to bypass the development of an opinionated boy.
His at home recuperation is going great. He got partially weaned from his oxygen last Wednesday and I have high hopes that he will be off of it completely after his Wednesday check up with surgery.
He's gaining some weight after basically holding steady during his month in the hospital. The continuous feeds are awkward, but its so nice for him and us that he doesn't get sick all the time anymore. Some days he actually wears the same outfit all day. We met with his GI doctor last week who formally recommended a g-tube. We knew that was coming. Our big decision is around whether or not he gets a nissen fundoplication. This procedure tightens the sphincter that connects the stomach and the esophagus, preventing reflux. If not done well, it can also cause long term problems. We have a meeting with a surgeon later in April to discuss the pros and cons. The g-tube will hopefully come in May.
Therapy has slowly restarted. He's doing tummy time and some simple exercises to help him gain his strength back. He's siting up nicely in his booster chair.
We had some issues last week with him not sleeping well. Valerie and I each spent a couple of nights getting little to no sleep. The surgery APN told us that it was an adjustment issue with being out of the hospital, that he was used to the stimulation of being in the ICU. Whatever it was, it was wicked. Things are getting better on that front as he's back to sleeping until 6 or 7 am.
Bobby has also developed a very crabby side to his otherwise perfect disposition. He screams if he gets put down when he wants to be held. Really screams. Its the first time we've had to really grit our teeth and let him cry. I know it's normal. I just somehow hoped we'd get a pass on some of the normal parenting trials, given that we've had some unique ones to overcome. But, given who his parents are, there was really no chance we were going to bypass the development of an opinionated boy.
3/23/09
3/21/09
Hospital Recap
Bobby being home is a wonderful thing. He is doing very well and is very happy to be out of the hospital. Bobby loves to go out and its so nice to be able to take him places again. Between the surgery and the throwing up all the time pre-surgery, its been a while since we had a family day out. Today we went to Barnes and Noble and Target, made many purchases for the Bubs, and enjoyed our smiley, giggling boy very much.
It's very hard to digest what's happened in the last month. We certainly didn't expect the marathon that we got. It was a very scary time. It was a very trying time. I think my best bet is to let Bubsy himself speak to the difficulties he faced.
It's very hard to digest what's happened in the last month. We certainly didn't expect the marathon that we got. It was a very scary time. It was a very trying time. I think my best bet is to let Bubsy himself speak to the difficulties he faced.
3/19/09
3/18/09
Big Bob, Little Bobby
It's finally going to happen. 28 days after coming into the hospital for a 5-7 day procedure, Bobby is going home tomorrow. The oxygen tank and pulsox (also called a pulse oximeter) are sitting next to his bed, waiting for our departure. We've been trained to use both. After many phone calls, Valerie has arranged delivery of a large oxygen tank to our house tomorrow. The prescriptions are sent to the pharmacy. Bobby's had his discharge echocardiogram. His course of treatment has been cleared by cardiology, pulmonology, and ENT. We're going home.
So many people have helped get us here. The surgeons, countless nurses. Friends and family who have kept Valerie and I sane through this (or at least as sane as we were when we started out). I joke that Bobby is well on his way to being a million dollar baby. Better, I think, to judge the magnitude of what he's been through by how many thank yous we owe.
And among those who we owe a debt is a man who isn't with us anymore. My brother Bob - one of the men Bobby is named after - passed away in November from a brain tumor. I comforted myself when he left that Bobby may have lost his godfather, but he gained a guardian angel. Bob was a very gentle man, very strong in his faith, a man who never complained throughout his illness. He withstood brutal chemo even though the doctors gave him little chance of survival. Like Bobby, he endured blood clots, breathing tubes. In the end, even my brother's strength couldn't win out over the chemotherapy and cancer that ravaged his body. But his spirit remains.
Bobby has shown that same patience and strength throughout his stay in the hospital. No matter how much he is poked and prodded, he starts each day fresh, with a smile and a desire to love and be loved. As day 27 comes to an end he has every right to be fussy - he's had a tube dropped from his nose to his small intestine, he's been held down for an echo and an x-ray, he's had his blood pressure and chest listened to countless times. Instead, he's watching Sesame Street, content as can be.
In the world of Down Syndrome, I think it's easy to obsess about developmental milestones. At our last therapy assessment, the therapists agreed that Bobby's development was that of a 4 or 5 month old. I myself have used that language to describe his progress to doctors. But it's an unfair convention.
True, in his quest to sit up alone, to crawl, his progress is consistent with a typical 4 or 5 month old. But what about the development of the strength required to survive 2 heart surgeries? His patience with repeated medical intrusions? His forgiveness of all the things we've had to do to him to make him well? In those categories he's more than lived up to the legacy of my 50 year old brother, partly, I believe, because his uncle has been holding his hand throughout the ordeal, holding the boat steady while we crossed some rough waters.
So many people have helped get us here. The surgeons, countless nurses. Friends and family who have kept Valerie and I sane through this (or at least as sane as we were when we started out). I joke that Bobby is well on his way to being a million dollar baby. Better, I think, to judge the magnitude of what he's been through by how many thank yous we owe.
And among those who we owe a debt is a man who isn't with us anymore. My brother Bob - one of the men Bobby is named after - passed away in November from a brain tumor. I comforted myself when he left that Bobby may have lost his godfather, but he gained a guardian angel. Bob was a very gentle man, very strong in his faith, a man who never complained throughout his illness. He withstood brutal chemo even though the doctors gave him little chance of survival. Like Bobby, he endured blood clots, breathing tubes. In the end, even my brother's strength couldn't win out over the chemotherapy and cancer that ravaged his body. But his spirit remains.
Bobby has shown that same patience and strength throughout his stay in the hospital. No matter how much he is poked and prodded, he starts each day fresh, with a smile and a desire to love and be loved. As day 27 comes to an end he has every right to be fussy - he's had a tube dropped from his nose to his small intestine, he's been held down for an echo and an x-ray, he's had his blood pressure and chest listened to countless times. Instead, he's watching Sesame Street, content as can be.
In the world of Down Syndrome, I think it's easy to obsess about developmental milestones. At our last therapy assessment, the therapists agreed that Bobby's development was that of a 4 or 5 month old. I myself have used that language to describe his progress to doctors. But it's an unfair convention.
True, in his quest to sit up alone, to crawl, his progress is consistent with a typical 4 or 5 month old. But what about the development of the strength required to survive 2 heart surgeries? His patience with repeated medical intrusions? His forgiveness of all the things we've had to do to him to make him well? In those categories he's more than lived up to the legacy of my 50 year old brother, partly, I believe, because his uncle has been holding his hand throughout the ordeal, holding the boat steady while we crossed some rough waters.
1 More Day...but don't jinx it
Bobby had a pretty good night. His saturations went back up into the mid 70s to low 80s. So, the dip yesterday wasn't a harbinger of bad things to come. It did, however, guarantee that we're going home on oxygen. But we're going home...tomorrow they say.
On Bobby's first day in the ICU, they gave us a sheet that is taped to his bed during his stay. It asks for his name, his weight, and his likes and dislikes. We didn't have a lot to say...he likes You Are my Sunshine; he doesn't like things being put into his mouth.
A month later, we have a revised list.
Bobby likes:
Going home on time
Cannulas
Spraying on his nurses
Pooping all over the sheets
Eating without throwing up
Raspberrying and making dinosaur noises
Music Therapy
Being held
Being held
Being held
Going home on time
Bobby dislikes:
People that disrespect the 'hawk
CPAP machines
CPAP head gear stretched over ears that are newly tubed
CPAP machines
Sedatives that aren't serious
Being mocked
Teething the week after open heart surgery
Severe diaper rash the week after open heart surgery
Multiple intubations/extubations
Nurses who tell mama she doesn't know how to read the monitor
Doctors who tell mama she didn't try hard enough to get him a hearing test
Mamas hanging out in the room all night and ruining his nurse sugar time
Music cds that aren't "Country Western Lullabys"
People that disrespect the 'hawk
On Bobby's first day in the ICU, they gave us a sheet that is taped to his bed during his stay. It asks for his name, his weight, and his likes and dislikes. We didn't have a lot to say...he likes You Are my Sunshine; he doesn't like things being put into his mouth.
A month later, we have a revised list.
Bobby likes:
Going home on time
Cannulas
Spraying on his nurses
Pooping all over the sheets
Eating without throwing up
Raspberrying and making dinosaur noises
Music Therapy
Being held
Being held
Being held
Going home on time
Bobby dislikes:
People that disrespect the 'hawk
CPAP machines
CPAP head gear stretched over ears that are newly tubed
CPAP machines
Sedatives that aren't serious
Being mocked
Teething the week after open heart surgery
Severe diaper rash the week after open heart surgery
Multiple intubations/extubations
Nurses who tell mama she doesn't know how to read the monitor
Doctors who tell mama she didn't try hard enough to get him a hearing test
Mamas hanging out in the room all night and ruining his nurse sugar time
Music cds that aren't "Country Western Lullabys"
People that disrespect the 'hawk
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