Hard to believe it's been so long since I posted! We've been incredibly busy with the boys. They already look so much older than the pictures I posted in June!
This month is a doctor-heavy month for us. First up was the developmental pediatrician. He was very pleased with Owen's growth, interaction, and overall appearance. He pretty much told us to keep doing what we're doing for now, so we're in a holding pattern with his therapies and feeding.
Next was the regular pediatrician; both boys saw her last Friday. And they both got shots. It was a little hairy - they were both really unhappy at the beginning of the visit, but they eventually calmed down and we got things taken care of. Gavin is 50-75th percentile for height, and 25-50th percentile for weight. So he's like Owen, longer than he is heavy. But unlike Owen, Gavin actually has a chubby tummy on him. It's adorable. =) So as of Friday, Gavin weighed 13 lbs 14 oz, and Owen weighed 18 lbs 7 oz. It won't be long before Gavin is overtaking his big brother in the weight department!
Next up is the pediatric ophthalmologist on the 26th, and the cardiologist on the 31st. That will be the big appointment, the one we're most anxious about. I have a feeling the cardiologist will look him over, do an ECHO, and release us for several more months in order to let Owen grow more before his next surgery. Everyone (medical professionals included) keeps telling us how great Owen looks, especially his color. And he really doesn't appear to tire out terribly easily to us. So I really think there will NOT be a surgery this fall, and that it'll happen closer to next fall. But we'll see. We may go in and find out his heart function really isn't so great after all. We're praying that's not the case.
Developmentally, Gavin was ahead of the game with rolling; he started rolling over both ways when he was just over 3 months old. It was a little sad for me. In fact, I cried when I first saw him roll over on his tummy. I'm happy he's growing and developing well, but it just seems too fast!
Owen is sitting on his own very well lately; in fact, he's started to appear much more comfortable and "normal" doing it. His favorite toys right now are his star stack up tower and his Duplo table. Today while he was playing with his Duplos, he stood up from his chair all by himself! He still is unable to transition from lying down to sitting, or from sitting on the floor to standing. He just doesn't want to put any weight on his hands. This is one of the main things we're working on in therapy.
And that's about it - everyone really is doing great and we're very thankful for Owen's continued good health. We still are able to function fairly normally as a family, and we're having a wonderful time being the parents of two sweet little boys!
Showing posts with label cardiology. Show all posts
Showing posts with label cardiology. Show all posts
Sunday, August 16, 2009
Thursday, April 2, 2009
ONE YEAR!
It's been such a long time since I updated that I hardly know where to begin! Today is Owen's first birthday. Twelve months ago today, he came into the world, we got a short glimpse of him, and he was quickly taken away. About two hours later, we got to see him and hold him for a bit. And then not again for several days. We got to hold him the day before his first surgery, and that morning before they took him away. And then not again for several days. He went back to the NICU and remained there until he was 2.5 months old. We saw him as much as we could, while also preparing for a move and with me trying to finish school. One year later, I don't really understand how we made it through all this, except by the grace of God.
So what is Owen like today? The little boy who could easily not have survived his heart condition, who easily could have been so affected by his chromosome abnormality that he would be completely unresponsive to us, is thriving! What's new with Owen? Well...
1) He can sit on his own, unsupported, for short bursts of time while he plays with toys. He loves to stand. He needs help with balance, but he supports himself and tries to take steps (yikes!) He is not very close to crawling, but is getting there. We will insist with him that he learn to crawl before walking, since crawling is tied to good language and speech skills later on. We are in PT and OT to accomplish these goals.
2) Owen has two teeth, and a couple more on the way!
3) At this point, he is completely G-tube fed for his formula. He started refusing the bottle around Christmas, when his first tooth came in. We are in speech therapy to work on this, and the therapist is optimistic that we'll get the bottle back. Aside from formula, he hates baby food, but loves to try what's on our plates!
4) Owen definitely recognizes strangers now, and has become a bit of a mama's boy. He loves to cuddle.
5) His favorite games are to see his daddy hop around like a bunny, see his mommy take slow steps toward him and tickle him, and see his soft toys get thrown around. He laughs up a storm anytime we do these things.
6) His favorite toy right now is his red bird that chirps when you squeeze its tummy. It can bring him straight out of a shrieking fit into smiles and coos.
7) Finally, and best of all, his heart function has remained great! It couldn't be any better given his funky anatomy. In fact, we last saw cardiology in February, and they released us until the end of AUGUST!!! Much, much praise to God for this blessing! The truth is, we *never* worry about his heart. Isn't that amazing?!
We know his next surgery is coming, either this fall or next fall. But we are at peace. Our baby boy is a joy to us, and whatever time we have with him is the time we're meant to have. We are thankful for it all.
The next several days will be big for us. Baby Frossard #2 is coming by scheduled induction next Friday/Saturday, April 10/11. We go in that Friday evening at around 5 for me to get checked, and if no dilation has occurred (as was the case with Owen,) they will give me some medicine, and we'll go from there. The reason I think we could still have the baby Friday is because Owen's induction began at 6pm and he was almost born that same night!
In the meantime, we are trying to get our house straightened and cleaned. The boys' rooms are almost completely finished. Owen has moved into his new, bigger-boy bedroom, and the nursery is put together for Bean. I feel the nesting instinct, but I am too tired to act on it! We let our house go so much that it's all we can do just to complete a decent cleaning.
I plan to start updating regularly again, especially now that Owen is getting a new baby brother to interact with! I have lots of pictures to post, once I get them downloaded. Owen was pretty cute with his birthday cupcake last night, though he didn't actually eat any of it. He definitely didn't inherit too much of my sweet tooth!
So what is Owen like today? The little boy who could easily not have survived his heart condition, who easily could have been so affected by his chromosome abnormality that he would be completely unresponsive to us, is thriving! What's new with Owen? Well...
1) He can sit on his own, unsupported, for short bursts of time while he plays with toys. He loves to stand. He needs help with balance, but he supports himself and tries to take steps (yikes!) He is not very close to crawling, but is getting there. We will insist with him that he learn to crawl before walking, since crawling is tied to good language and speech skills later on. We are in PT and OT to accomplish these goals.
2) Owen has two teeth, and a couple more on the way!
3) At this point, he is completely G-tube fed for his formula. He started refusing the bottle around Christmas, when his first tooth came in. We are in speech therapy to work on this, and the therapist is optimistic that we'll get the bottle back. Aside from formula, he hates baby food, but loves to try what's on our plates!
4) Owen definitely recognizes strangers now, and has become a bit of a mama's boy. He loves to cuddle.
5) His favorite games are to see his daddy hop around like a bunny, see his mommy take slow steps toward him and tickle him, and see his soft toys get thrown around. He laughs up a storm anytime we do these things.
6) His favorite toy right now is his red bird that chirps when you squeeze its tummy. It can bring him straight out of a shrieking fit into smiles and coos.
7) Finally, and best of all, his heart function has remained great! It couldn't be any better given his funky anatomy. In fact, we last saw cardiology in February, and they released us until the end of AUGUST!!! Much, much praise to God for this blessing! The truth is, we *never* worry about his heart. Isn't that amazing?!
We know his next surgery is coming, either this fall or next fall. But we are at peace. Our baby boy is a joy to us, and whatever time we have with him is the time we're meant to have. We are thankful for it all.
The next several days will be big for us. Baby Frossard #2 is coming by scheduled induction next Friday/Saturday, April 10/11. We go in that Friday evening at around 5 for me to get checked, and if no dilation has occurred (as was the case with Owen,) they will give me some medicine, and we'll go from there. The reason I think we could still have the baby Friday is because Owen's induction began at 6pm and he was almost born that same night!
In the meantime, we are trying to get our house straightened and cleaned. The boys' rooms are almost completely finished. Owen has moved into his new, bigger-boy bedroom, and the nursery is put together for Bean. I feel the nesting instinct, but I am too tired to act on it! We let our house go so much that it's all we can do just to complete a decent cleaning.
I plan to start updating regularly again, especially now that Owen is getting a new baby brother to interact with! I have lots of pictures to post, once I get them downloaded. Owen was pretty cute with his birthday cupcake last night, though he didn't actually eat any of it. He definitely didn't inherit too much of my sweet tooth!
Wednesday, December 3, 2008
A Healthy Baby...
Is exactly what it appears we're having! Our ultrasound today showed all of the appropriate parts, formed the appropriate ways, and in the appropriate places. It also showed one particular part that tells us the gender of the baby. Yes, we're going to tell. No, not today! We're waiting until we have a chance to tell our families before announcing it here.
Our experiences with having children have obviously been anything but typical. The doctor looking over the ultrasound (the same one that delivered Owen) said, "Well, I can't find anything wrong with this kid." It was music to our ears, but I'm sure it's not exactly the phrase uttered by most OB/GYNs upon analyzing ultrasound images! During our first ultrasound with Owen, I was excited during it, and terrified after. This time I was terrified during it, and excited after. Given this good result, we are not having amniocentesis performed this time. We will simply wait and have the new baby's chromosomes analyzed once he/she is born.
Meanwhile... Baby Owen has an ear infection. =( He had a fever on Monday, and his temp came down out of fever range but has remained high since. He's been cranky and wanting to be held constantly. I talked to his pediatrician's office Monday, and they weren't concerned. We saw the cardiologist this morning; he looked in Owen's ears and declared the left one fine, but the right one he couldn't see in because of too much wax. He wasn't concerned either. However, once I got to my regular OB's office (yes, we had 3 doctor appts scheduled today,) he had developed a discharge from his right ear. I took him over to an urgent visit center and sure enough, the pediatrician thought Owen's eardrum had ruptured. Hence the discharge, fever, and irritability. Poor bubby. So now we have two antibiotics to give him. Hopefully he'll be out of the miserable stage soon! It's heartbreaking to see him so sad and in pain.
On the plus side, though, our cardiology appointment went great! The cardiologist says Owen's doing very well. We get to discontinue one of his meds altogether, and go down to once a day on another one. So we're back to the schedule we had before this surgery. Also, Owen officially gained 12 ounces in less than a month! This is huge for him, and the cardiologist was really happy with that. So hopefully we can continue these positive trends, and get Owen feeling better soon! We want our bubby to be able to enjoy all the fun Christmas events!
Our experiences with having children have obviously been anything but typical. The doctor looking over the ultrasound (the same one that delivered Owen) said, "Well, I can't find anything wrong with this kid." It was music to our ears, but I'm sure it's not exactly the phrase uttered by most OB/GYNs upon analyzing ultrasound images! During our first ultrasound with Owen, I was excited during it, and terrified after. This time I was terrified during it, and excited after. Given this good result, we are not having amniocentesis performed this time. We will simply wait and have the new baby's chromosomes analyzed once he/she is born.
Meanwhile... Baby Owen has an ear infection. =( He had a fever on Monday, and his temp came down out of fever range but has remained high since. He's been cranky and wanting to be held constantly. I talked to his pediatrician's office Monday, and they weren't concerned. We saw the cardiologist this morning; he looked in Owen's ears and declared the left one fine, but the right one he couldn't see in because of too much wax. He wasn't concerned either. However, once I got to my regular OB's office (yes, we had 3 doctor appts scheduled today,) he had developed a discharge from his right ear. I took him over to an urgent visit center and sure enough, the pediatrician thought Owen's eardrum had ruptured. Hence the discharge, fever, and irritability. Poor bubby. So now we have two antibiotics to give him. Hopefully he'll be out of the miserable stage soon! It's heartbreaking to see him so sad and in pain.
On the plus side, though, our cardiology appointment went great! The cardiologist says Owen's doing very well. We get to discontinue one of his meds altogether, and go down to once a day on another one. So we're back to the schedule we had before this surgery. Also, Owen officially gained 12 ounces in less than a month! This is huge for him, and the cardiologist was really happy with that. So hopefully we can continue these positive trends, and get Owen feeling better soon! We want our bubby to be able to enjoy all the fun Christmas events!
Sunday, November 30, 2008
Let it Snow!
We woke up this morning to a beautiful blanket of snow on the ground, and more on the way! It's still coming down fairly heavily; we expect 2 inches total by tomorrow. Not very much, but enough to start getting in the spirit of Christmas. It just isn't Christmas to me without snow!
Our little man is currently lying on the floor, drifting off to sleep. We spent the day with family yesterday, and he only had about 4 30-minute naps between 8am and 10pm; there was just too much going on! So he's been catching up on his sleep.
I think his weight is trending a little better. The day of his surgery, he was weighed at 13 pounds even, and two weeks later at his cardiology appointment, he still weighed 13 pounds even. At that point, our scale said he was 13 pounds 7 ounces. Now it says 14 pounds, so hopefully that means he's gained at least half a pound. We'll see on Wednesday.
Speaking of Wednesday, we have lots going on then. Owen is up first with a cardiology appointment in the morning. Then he and I trek off to my regular OB/GYN for a monthly checkup. And later that afternoon, Mark will meet up with us for an appointment with the perinatologist. This is the big appointment: our ultrasound to get a good look at whether Bean is healthy. I know there are no guarantees, even if all the "parts" are there. So we may still opt to have amniocentesis, or we may decide to wait until the baby is born and have a blood test drawn then. I don't think we will ever have another child without having its chromosomes tested. There are quite a few families in the trisomy 10q group who didn't have diagnoses for their children until they were a year or older, simply because those children were physically healthy. It wasn't until they started falling behind on developmental milestones that they noticed a problem. The luxury of having a prenatal diagnosis for Owen is that we knew he would fall behind, and we can take steps now to help him progress and keep him from developing bad habits in the meantime.
Developmentally, we're about to reach a huge milestone. That's right - no more sternal precautions as of tomorrow!!! We are VERY excited about this. Owen has become more and more steady holding up his head, and he wants SO badly to sit up and roll over. However, we haven't been able to let him do anything that would put pressure on his chest. So he hasn't been on his tummy in several weeks, and we can't hold him with our hands supporting his chest. It really has set him back, because he can't develop the muscles he needs to sit properly without being on his tummy and rolling over. Hopefully we will make some good progress over the next few weeks.
We set up our Christmas tree on Friday, and Owen adores it! Of course, he loves anything that lights up. Santa has Owen's Christmas all set, and Mark and I are interested to see what Owen thinks of Christmas overall. It was difficult to keep Santa from going overboard, because there are just so many toys that look like fun for Owen, but I think we did a good job.
I'll definitely update again on Wednesday to let you all know about Bean. But don't be surprised if you don't hear the gender of the baby just yet; we probably won't tell our family until Saturday, so look for news next weekend!
Our little man is currently lying on the floor, drifting off to sleep. We spent the day with family yesterday, and he only had about 4 30-minute naps between 8am and 10pm; there was just too much going on! So he's been catching up on his sleep.
I think his weight is trending a little better. The day of his surgery, he was weighed at 13 pounds even, and two weeks later at his cardiology appointment, he still weighed 13 pounds even. At that point, our scale said he was 13 pounds 7 ounces. Now it says 14 pounds, so hopefully that means he's gained at least half a pound. We'll see on Wednesday.
Speaking of Wednesday, we have lots going on then. Owen is up first with a cardiology appointment in the morning. Then he and I trek off to my regular OB/GYN for a monthly checkup. And later that afternoon, Mark will meet up with us for an appointment with the perinatologist. This is the big appointment: our ultrasound to get a good look at whether Bean is healthy. I know there are no guarantees, even if all the "parts" are there. So we may still opt to have amniocentesis, or we may decide to wait until the baby is born and have a blood test drawn then. I don't think we will ever have another child without having its chromosomes tested. There are quite a few families in the trisomy 10q group who didn't have diagnoses for their children until they were a year or older, simply because those children were physically healthy. It wasn't until they started falling behind on developmental milestones that they noticed a problem. The luxury of having a prenatal diagnosis for Owen is that we knew he would fall behind, and we can take steps now to help him progress and keep him from developing bad habits in the meantime.
Developmentally, we're about to reach a huge milestone. That's right - no more sternal precautions as of tomorrow!!! We are VERY excited about this. Owen has become more and more steady holding up his head, and he wants SO badly to sit up and roll over. However, we haven't been able to let him do anything that would put pressure on his chest. So he hasn't been on his tummy in several weeks, and we can't hold him with our hands supporting his chest. It really has set him back, because he can't develop the muscles he needs to sit properly without being on his tummy and rolling over. Hopefully we will make some good progress over the next few weeks.
We set up our Christmas tree on Friday, and Owen adores it! Of course, he loves anything that lights up. Santa has Owen's Christmas all set, and Mark and I are interested to see what Owen thinks of Christmas overall. It was difficult to keep Santa from going overboard, because there are just so many toys that look like fun for Owen, but I think we did a good job.
I'll definitely update again on Wednesday to let you all know about Bean. But don't be surprised if you don't hear the gender of the baby just yet; we probably won't tell our family until Saturday, so look for news next weekend!
Thursday, July 31, 2008
Welcome!
Hello, and welcome to our new site for updates on Baby Owen! I decided to switch to Blogspot so our family and friends would have slightly easier access (eg no sign in required.) Not sure if I can archive the updates from our CarePage on here, but I may try at some point. And now for today's update!
The big news I mentioned last time has not been finalized yet, so we're all still waiting on that. Sorry. But we do have other big news. Owen had a cardiology appointment today, and his catheterization is scheduled for August 27th. The cath will be done to check out his heart prior to his next surgery, the Glenn. Dr. Parikh, one of our four cardiologists, said Owen's heart sounds very stable and good today, and we have no reason to believe we will end up needing the Glenn before October. In fact, if Owen's heart function remains this good, we may wait through the winter before having the Glenn. What we want to avoid is having the Glenn during the winter, since that is the high season for infection. This surgery is usually done between 6 and 9 months of age (6 is October, 9 is January) but can be postponed longer if heart function is good enough. I want to do what's best for Owen, but I definitely prefer October. I'd hate to get in a situation where we have to have the Glenn emergently in the winter.
Aside from scheduling the cath, Dr. Parikh was happy with how Owen is doing. We also saw Dr. Escobar (developmental pediatrician) today, and he is downright thrilled with Owen's progress. According to their info, Owen's height and weight, while extremely low, are tracking along the curve. This means his growth rate is normal, even if he's very small for his age. His weight is 3rd percentile, and his height is not even on the curve. Dr. Escobar also looked at Owen's current motor skills, and was pleased with those as well.
Speaking of motor skills, Owen has been showing off lately. Yesterday he started reaching out and grabbing the toys on his gym. He also reaches out and grabs toys while lying on his side. He has one toy that is a cube, and when you push each side it plays a song. He is able to push the sides and turn it on, although I don't think he realizes he's the one doing it! He just sees it light up and wants to get at it. It's handy that he can turn it on by himself, though!
Dr. Escobar also suggested we start Owen on solid foods. So today we experimented with rice cereal, with mixed results. He doesn't seem to care for it too much (I think I mixed it too thick) but he doesn't push it out of his mouth, either. He sort of moves it around until he accidentally swallows it, or I give him the bottle to wash it down. I think if I mix it a little thinner, he'll have an easier time swallowing it. I forgot to say it, but you've probably already guessed he's eating again. I don't know what his issue was over the weekend when he was refusing the bottle. I took him to the regular pediatrician on Monday (he needed vaccinations anyway) and she could find nothing wrong with him. That day he just up and started eating again. He's not back up to eating quite as much from the bottle as he was before, but we're at about 50/50. I'll definitely take it!
We have PT, a visit with Mark's family, and the Feast of St. Alphonsus (our church's patron saint) tomorrow. So it will be a busy day! On Saturday I graduate from Purdue's Doctor of Pharmacy program. This has been a long time coming (I've been in college 10 years!) and it feels like such a huge accomplishment. Especially given what we have gone through in the past year. God has been so good to us through it all. One more example of just how good: we found daycare for Owen. Not only did we find what seems like a great, loving in-home situation, but he will be cared for by a woman who was formerly a NICU nurse for 27 years. We found this person through a post I put out on a website. We got ONE response, and it was her. How amazing is that? We just keep getting taken care of so completely. See what prayer can do??!
The big news I mentioned last time has not been finalized yet, so we're all still waiting on that. Sorry. But we do have other big news. Owen had a cardiology appointment today, and his catheterization is scheduled for August 27th. The cath will be done to check out his heart prior to his next surgery, the Glenn. Dr. Parikh, one of our four cardiologists, said Owen's heart sounds very stable and good today, and we have no reason to believe we will end up needing the Glenn before October. In fact, if Owen's heart function remains this good, we may wait through the winter before having the Glenn. What we want to avoid is having the Glenn during the winter, since that is the high season for infection. This surgery is usually done between 6 and 9 months of age (6 is October, 9 is January) but can be postponed longer if heart function is good enough. I want to do what's best for Owen, but I definitely prefer October. I'd hate to get in a situation where we have to have the Glenn emergently in the winter.
Aside from scheduling the cath, Dr. Parikh was happy with how Owen is doing. We also saw Dr. Escobar (developmental pediatrician) today, and he is downright thrilled with Owen's progress. According to their info, Owen's height and weight, while extremely low, are tracking along the curve. This means his growth rate is normal, even if he's very small for his age. His weight is 3rd percentile, and his height is not even on the curve. Dr. Escobar also looked at Owen's current motor skills, and was pleased with those as well.
Speaking of motor skills, Owen has been showing off lately. Yesterday he started reaching out and grabbing the toys on his gym. He also reaches out and grabs toys while lying on his side. He has one toy that is a cube, and when you push each side it plays a song. He is able to push the sides and turn it on, although I don't think he realizes he's the one doing it! He just sees it light up and wants to get at it. It's handy that he can turn it on by himself, though!
Dr. Escobar also suggested we start Owen on solid foods. So today we experimented with rice cereal, with mixed results. He doesn't seem to care for it too much (I think I mixed it too thick) but he doesn't push it out of his mouth, either. He sort of moves it around until he accidentally swallows it, or I give him the bottle to wash it down. I think if I mix it a little thinner, he'll have an easier time swallowing it. I forgot to say it, but you've probably already guessed he's eating again. I don't know what his issue was over the weekend when he was refusing the bottle. I took him to the regular pediatrician on Monday (he needed vaccinations anyway) and she could find nothing wrong with him. That day he just up and started eating again. He's not back up to eating quite as much from the bottle as he was before, but we're at about 50/50. I'll definitely take it!
We have PT, a visit with Mark's family, and the Feast of St. Alphonsus (our church's patron saint) tomorrow. So it will be a busy day! On Saturday I graduate from Purdue's Doctor of Pharmacy program. This has been a long time coming (I've been in college 10 years!) and it feels like such a huge accomplishment. Especially given what we have gone through in the past year. God has been so good to us through it all. One more example of just how good: we found daycare for Owen. Not only did we find what seems like a great, loving in-home situation, but he will be cared for by a woman who was formerly a NICU nurse for 27 years. We found this person through a post I put out on a website. We got ONE response, and it was her. How amazing is that? We just keep getting taken care of so completely. See what prayer can do??!
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