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.
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.
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