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.
4/26/08
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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