Josh had his six month postoperative appointment today at the University of Cincinnati with our cardiologist. Since he needed to have an echocardiogram done and would have to lie still for almost an hour it was pretty likely they would have to sedate him so we had a bit of a rough morning since he couldn't eat or drink anything at all for the two hours before the procedure and could only do apple juice for the six hours before that. I think we may have the only baby on earth who hates juice but he did finally drink it this morning when he was hungry enough. Unfortunately two hours later he threw it up all over himself in the car on the way to our appointment. This did work a bit in our favor as we weren't supposed to let him sleep then either so they would need as little medicine as possible. Apple juice through the nose = very upset baby so there was definitely no sleeping in the car.
Overall our appointment was relatively efficient. We force fed Josh the phenobarbital (which evidently tastes horrible) by blowing in his face which forced him to swallow. As you can imagine this did very little to improve his mood, but luckily it worked quickly and in fifteen minutes he was fast asleep. The techs then took care of his ultrasound and EKG and once they were sure he was able to protect his airway we were off to wait on the cardiologist.
Luckily all of our test brought great news. His vein repair has healed well and the blood flows without any turbulence. There is no sign of strain on the heart or lungs or any stenosis of the vein sites and the atrial repair is holding great. The small defect in between the ventricles of his heart has closed itself as our surgeon believed it would and overall his heart on ultrasound looks completely normal. What a relief to finally get the word that the liklihood of any future surgery or problems with his heart are very, very low. In fact we don't have to see his cardiologist for an entire year now and even then they won't need to redo the ultrasound. Plan for now is they'll repeat it probably around age 3 as his heart grows and if things look as good then as they do now we'll be able to space our appointments to every other year. Trying to picture J as a three year old seems a long way away but I'm sure I'll be hear before we know it. Thankfully in the meantime, we just have to treat him like a "normal kid" although I'm not sure we need to tell him they OK'd football if he wants. We may go on pretending that's not an option for my sake.
Thursday, March 17, 2011
Sunday, March 13, 2011
The Happiest Place on Earth
We didn't think Josh (or Scott and I) would really appreciate Disney World at his age, but we did decide to brave Epcot for the day. We all had a great time and Josh proved again how much of a "go with the flow" baby he is. We got there just as they opened and found we were able to ride many of the rides with Josh on our laps. He wasn't scared by any of the loud noises, darkness or singing characters and he took two great naps in his stroller while we wandered through the park.
All set in the stroller and ready to go. I should have taken a picture of the areas for "stroller parking" outside each of the rides. If you ever want to pick out a new stroller model this is the place to go check them out.
He enjoyed the Finding Nemo ride but the aquarium at the end was a bigger hit. We stayed for quite a while just to let him watch the fish.
He started to get a little cranky then since he was ready for his morning bottle so we joked that we were going to feed him to the sharks.
Luckily dad changed his mind and came in to rescue him
The model train exhibit in Germany was another big hit
We had a great lunch in Italy and enjoyed meeting Rosemarie in the Italian shop who christened Josh with his first Disney trip button.
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The HGTV festival of flowers being held while we were there so the topiaries and flower beds were all decked out.
He loved meeting all of the characters but Winnie the Pooh and Tigger were favorites
For Josh though the most fascinating thing at Epcot was the grass. We were just trying to take his picture in front of the flowers but we couldn't get him to stop rubbing the grass and look at us. We finally realized he'd never seen or felt grass before.
With a change to a little concrete we were able to capture a Mouse ear smile and a good family photo to cap off our day.
All set in the stroller and ready to go. I should have taken a picture of the areas for "stroller parking" outside each of the rides. If you ever want to pick out a new stroller model this is the place to go check them out.
He enjoyed the Finding Nemo ride but the aquarium at the end was a bigger hit. We stayed for quite a while just to let him watch the fish.
He started to get a little cranky then since he was ready for his morning bottle so we joked that we were going to feed him to the sharks.
Luckily dad changed his mind and came in to rescue him
The model train exhibit in Germany was another big hit
We had a great lunch in Italy and enjoyed meeting Rosemarie in the Italian shop who christened Josh with his first Disney trip button.
The HGTV festival of flowers being held while we were there so the topiaries and flower beds were all decked out.
He loved meeting all of the characters but Winnie the Pooh and Tigger were favorites
For Josh though the most fascinating thing at Epcot was the grass. We were just trying to take his picture in front of the flowers but we couldn't get him to stop rubbing the grass and look at us. We finally realized he'd never seen or felt grass before.
With a change to a little concrete we were able to capture a Mouse ear smile and a good family photo to cap off our day.
Surf, Sun and Fun
While southern Ohio has certainly been better than Michigan in terms of winter snow and grayness, we were all still ready for some warmth and sunshine. Last week I had a medical conference in Florida so we all flew down ready to enjoy some springtime.
Here's Josh showing his excitement (and his new teeth) on the plane
Our hotel had a great pool with a lazy river and a kids pool. Luckily the weather was warm enough by the afternoons that we could enjoy them. Since Josh seems to have inherited my fairness, the long sleeve rashgaurd and hat were essential.
The beach entry was also a big hit since he could practice his walking into the pool and it gave him a shallow place to do his favorite thing - splashing. We took this short video to showcase all of his new swimming skills from his lessons.
The lazy river also offered some great floating time
I don't know exactly how "lazy" all of this was since with a fresh change of clothes this is usually how he ended up
Here's Josh showing his excitement (and his new teeth) on the plane
Our hotel had a great pool with a lazy river and a kids pool. Luckily the weather was warm enough by the afternoons that we could enjoy them. Since Josh seems to have inherited my fairness, the long sleeve rashgaurd and hat were essential.
The beach entry was also a big hit since he could practice his walking into the pool and it gave him a shallow place to do his favorite thing - splashing. We took this short video to showcase all of his new swimming skills from his lessons.
The lazy river also offered some great floating time
I don't know exactly how "lazy" all of this was since with a fresh change of clothes this is usually how he ended up
Saturday, March 12, 2011
I want my baby back, baby back, baby back ribs
Josh loves rough housing with Scott and he will giggle like crazy when Scott tells him he's hungry for some "baby back ribs". They both seemed to enjoy "dinner" a few weeks ago.
Friday, February 18, 2011
Our furry friends
While most of our animals still aren't too sure what they think about Josh, he loves watching them and starts laughing pretty much if they just walk into the room. I'm sure once he starts dropping food, the dogs will gain a new appreciation but right now his biggest fan is our most reluctantly social pet, our cat Ella. She's definitely selfish and just wants attention so she loves the adoration from Josh. We've even found her sleeping in his crib with him before we put a baby gate in front of his door. While this probably was also a way of hiding from the dogs, she'll also cuddle with us in the rocking chair while we're going to sleep and loves to sit with Josh on the couch.
We took this video a few weeks ago of her tickling Josh's feet.
We took this video a few weeks ago of her tickling Josh's feet.
Thursday, February 17, 2011
Month Eight
Nicknames: J, munchkin, little bit
Temperament: Inquisitive. Now that he can move around he wants into everything and loves grabbing onto handles, the IPad, stacks of paper and whatever else he can find. He's definitely getting a little more forceful with what he wants. He still loves getting out and seeing new things and meeting new people. He will babble and giggle with anyone who will stop to check him out. He doesn't seem to have any stranger anxiety and is a big hit at the nursery at the church and the YMCA for being such a happy guy.
Stats: No doctor's appointments this month but at the nurse visit for his Synagis shot he weighed 17.5 lbs and was 28 inches long.
Looks: We have a tooth! Or at least the very beginnings of one. Right now it's just a little nubbin on his lower gum line but after the last four months of people always telling us he had to be teething, he finally is. I'm sad that our gummy smiles are now limited but we think he'll make a pretty cute snaggle-tooth. The single toothed look isn't going to last too long though since two other bottom teeth are about to be poking through as well.
Accomplishments: Becoming mobile has been the biggest change this last month. He's still not crawling up on his hands and knees but he does this really cute inch-worm like scoot where he lunges forward then draws his knees and butt in and then lunges again. Between that, rolling and his army crawl he can pretty much get wherever he wants. Thankfully for us, he's not very fast yet so he's pretty easy to catch. He loves walking around still holding your hands and now he tries letting go. Usually this results in him falling but if he has a wide enough stance he can stay standing for 5 seconds on his own. His pincer grasp and coordination are getting better everyday and he was even able to lean over and steal a french fry off my plate the other day. His babbling continues and he loves making "b" and "m" sounds. No "mama" yet but we "practice" everyday. :)
Things he loved the most: Eating. It definitely took him a little while to warm up to the idea of solids and using a spoon but now that he has the hang of it he loves mealtime. He'll lean in towards you with his mouth wide open and he gets upset if you don't have a new bite ready when he's done with the last one. I'm losing track of all the foods we've tried but he's definitely had avocado, sweet potato, banana, spinach, corn, broccoli, peas, carrots, apples, pears, blueberries, strawberries, parsnips, pumpkin and squash. So far he loves them all (although he was less excited about the spinach) and is up to at least 2-3 ounces twice a day. We've tried some of the yogurt melts and other "dissolving" finger foods which he's able to get too his mouth but since they don't stay there the mess keeps us from doing them more often. We're starting to work on using a sippy cup too but the concept of tipping it up and sucking from it at the same time are a bit beyond us at this time.
Things we loved the most: Whatever sleeping problem we had last month appears to have resolved itself. We're trying not to get oo used to it but for about 98% of the last few weeks he's been taking 2 good naps a day and he's usually in his crib asleep by 7:30 or 8. He still wakes up around 4 or 5 and needs a diaper change and a bottle but then he goes back to sleep until 7:30 or 8 am and even then he's happy to lay in his crib and talk to himself for quite awhile.
Things he could do without: Getting dressed. Now that he likes being mobile, he is less than thrilled with being held down to get his clothes or jammies on.
Things we could do without: The alligator death roll he thinks he has to do everytime you lay him on the changing table. He'll roll and roll and roll which makes getting a clean diaper onto him a challenge.
Item/toy he loved the most: He loved anything that was interactive this month. His einstein activity table, crawl ball, and sprinkler duck were all used until the batteries had to be replaced. Scott's "I'ma gonna get you" game where he "sneaks" up on him to shake his belly is also a huge hit. His best buddy "G" (his giraffe wubanub) is still also ever present to make car rides, naps, bedtime, middle of the night wakings more comforting.
Items/toy we loved the most: Our high chair/booster seat and vinyl bibs have made our food adventures much easier to recover from :)
Item we all hated: Well the tooth hasn't been too popular yet. It makes it more painful for us when he tries and succeeds on chewing on our fingers or cheeks etc (It's like a small tack) and I'm sure given his insatiable need to chew on things it's not too fun for him yet either.
Surprises: It's been so fun to see him start to really interact with the world whether it's stealing french fries off of my plate or trying to use his "baby force" to draw his toys close enough where he can grab them but it still catches us by surprise almost every time. I guess we still need to adapt to him participating on his own instead of just being a recepticle that what's going on around him.
Momentous events of this month: Josh has loved the swimming lessons that he's been taking with Scott and he is getting really good at paddling to get closer to his toys. Since he sits up so well on his own now we also got rid of the infant bath seat and have been letting him take "big boy" baths complete with bubbles and rubber duckies which have been a big hit.
Things we're looking forward to: We're taking a family trip to Florida for a medical conference next week and we're all looking forward to some warmth and sunshine. We'll be in Orlando and may attempt a day visit to Epcot or Sea World. Obviously he's a bit too young for Disney World so we'll save that for when he can appreciate it more. Since he's been enjoying his swimming lessons so much we just hope it's warm enough for some pool time. We're also seeing his cardiologist next month and we're hoping that all the signs of heart strain are gone on his echo this time.
More favorite pictures from this month
Watching Sesame Street while Dad takes a shower
Bathtime
Hanging out, looking cute
Getting ready for the outdoors
Trying out our baby backpack
Testing out kayaks
Temperament: Inquisitive. Now that he can move around he wants into everything and loves grabbing onto handles, the IPad, stacks of paper and whatever else he can find. He's definitely getting a little more forceful with what he wants. He still loves getting out and seeing new things and meeting new people. He will babble and giggle with anyone who will stop to check him out. He doesn't seem to have any stranger anxiety and is a big hit at the nursery at the church and the YMCA for being such a happy guy.
Stats: No doctor's appointments this month but at the nurse visit for his Synagis shot he weighed 17.5 lbs and was 28 inches long.
Looks: We have a tooth! Or at least the very beginnings of one. Right now it's just a little nubbin on his lower gum line but after the last four months of people always telling us he had to be teething, he finally is. I'm sad that our gummy smiles are now limited but we think he'll make a pretty cute snaggle-tooth. The single toothed look isn't going to last too long though since two other bottom teeth are about to be poking through as well.
Accomplishments: Becoming mobile has been the biggest change this last month. He's still not crawling up on his hands and knees but he does this really cute inch-worm like scoot where he lunges forward then draws his knees and butt in and then lunges again. Between that, rolling and his army crawl he can pretty much get wherever he wants. Thankfully for us, he's not very fast yet so he's pretty easy to catch. He loves walking around still holding your hands and now he tries letting go. Usually this results in him falling but if he has a wide enough stance he can stay standing for 5 seconds on his own. His pincer grasp and coordination are getting better everyday and he was even able to lean over and steal a french fry off my plate the other day. His babbling continues and he loves making "b" and "m" sounds. No "mama" yet but we "practice" everyday. :)
Things he loved the most: Eating. It definitely took him a little while to warm up to the idea of solids and using a spoon but now that he has the hang of it he loves mealtime. He'll lean in towards you with his mouth wide open and he gets upset if you don't have a new bite ready when he's done with the last one. I'm losing track of all the foods we've tried but he's definitely had avocado, sweet potato, banana, spinach, corn, broccoli, peas, carrots, apples, pears, blueberries, strawberries, parsnips, pumpkin and squash. So far he loves them all (although he was less excited about the spinach) and is up to at least 2-3 ounces twice a day. We've tried some of the yogurt melts and other "dissolving" finger foods which he's able to get too his mouth but since they don't stay there the mess keeps us from doing them more often. We're starting to work on using a sippy cup too but the concept of tipping it up and sucking from it at the same time are a bit beyond us at this time.
Things we loved the most: Whatever sleeping problem we had last month appears to have resolved itself. We're trying not to get oo used to it but for about 98% of the last few weeks he's been taking 2 good naps a day and he's usually in his crib asleep by 7:30 or 8. He still wakes up around 4 or 5 and needs a diaper change and a bottle but then he goes back to sleep until 7:30 or 8 am and even then he's happy to lay in his crib and talk to himself for quite awhile.
Things he could do without: Getting dressed. Now that he likes being mobile, he is less than thrilled with being held down to get his clothes or jammies on.
Things we could do without: The alligator death roll he thinks he has to do everytime you lay him on the changing table. He'll roll and roll and roll which makes getting a clean diaper onto him a challenge.
Item/toy he loved the most: He loved anything that was interactive this month. His einstein activity table, crawl ball, and sprinkler duck were all used until the batteries had to be replaced. Scott's "I'ma gonna get you" game where he "sneaks" up on him to shake his belly is also a huge hit. His best buddy "G" (his giraffe wubanub) is still also ever present to make car rides, naps, bedtime, middle of the night wakings more comforting.
Items/toy we loved the most: Our high chair/booster seat and vinyl bibs have made our food adventures much easier to recover from :)
Item we all hated: Well the tooth hasn't been too popular yet. It makes it more painful for us when he tries and succeeds on chewing on our fingers or cheeks etc (It's like a small tack) and I'm sure given his insatiable need to chew on things it's not too fun for him yet either.
Surprises: It's been so fun to see him start to really interact with the world whether it's stealing french fries off of my plate or trying to use his "baby force" to draw his toys close enough where he can grab them but it still catches us by surprise almost every time. I guess we still need to adapt to him participating on his own instead of just being a recepticle that what's going on around him.
Momentous events of this month: Josh has loved the swimming lessons that he's been taking with Scott and he is getting really good at paddling to get closer to his toys. Since he sits up so well on his own now we also got rid of the infant bath seat and have been letting him take "big boy" baths complete with bubbles and rubber duckies which have been a big hit.
Things we're looking forward to: We're taking a family trip to Florida for a medical conference next week and we're all looking forward to some warmth and sunshine. We'll be in Orlando and may attempt a day visit to Epcot or Sea World. Obviously he's a bit too young for Disney World so we'll save that for when he can appreciate it more. Since he's been enjoying his swimming lessons so much we just hope it's warm enough for some pool time. We're also seeing his cardiologist next month and we're hoping that all the signs of heart strain are gone on his echo this time.
More favorite pictures from this month
Watching Sesame Street while Dad takes a shower
Bathtime
Hanging out, looking cute
Getting ready for the outdoors
Trying out our baby backpack
Testing out kayaks
Wednesday, February 9, 2011
At the Heart of it All
February 7th-14th is congenital heart disease awareness week. I have to admit even as a former obstetrician who knows that CHD is the most common birth defect affecting almost 1% of babies born in the United States, it wasn't something that I ever thought of when I was pregnant. I worried about miscarriage, preterm labor, and pre-eclampsia which seemed to effect just about every pregnancy I can recall from my time as a resident. While those things are certainly much more common, it's been amazing to me how many people we already knew and new people that we've met who have a baby with CHD. While it's not something that I've really talked about here since we brought Josh home from his surgery, it's something I think about every day. The shock of discovering that something was wrong with our precious baby, the fear over what would happen next, the guilt over not forcing the medical team to do the testing sooner even though something didn't seem right, the gratitude that he's now home safe with us. Most days, those first eight weeks seem like a dream but you only have to look down at his chest scar to see that it wasn't. Every night while I'm rocking him to sleep I think about the fact that he easily could not have survived everything that he's been through and that we're so lucky his defect was relatively simple to repair and I squeeze him a little tighter. Everytime I get up with him in the middle of the night I think of those heart parents out there who don't have a baby to wake them up anymore and those middle of the night bottles don't seem like such a big deal. I think about the babies who have more surgeries in their future and the young teenage parents who had the bed next to use in the PCTU and wonder how they cope.
Our next and hopefully last (at least for a while) echocardiogram is next month and we have no reason to suspect they'll find anything abnormal. In the meantime, we'll hug him as tight as he'll let us (rolling over these days is much more fun) and continue to say prayers for his continued health, those we've met on this journey, the doctors that have cared for them and that future babies and parents won't have these worries.
In honor of CHD week (and Valentines day) love on those around you a little harder.
Look how far we've come.....
Our next and hopefully last (at least for a while) echocardiogram is next month and we have no reason to suspect they'll find anything abnormal. In the meantime, we'll hug him as tight as he'll let us (rolling over these days is much more fun) and continue to say prayers for his continued health, those we've met on this journey, the doctors that have cared for them and that future babies and parents won't have these worries.
In honor of CHD week (and Valentines day) love on those around you a little harder.
Look how far we've come.....
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