Through the modern age of technology - namely Facebook - we've been able to join support groups of parents (and adults who have EA/TEF and Tracheomalacia) of kids who have EA/TEF and Tracheomalacia. I didn't realize how much emotion I've been carrying around until we joined these groups. As awful as it is to know that other children have to deal with all of these health problems, there is such a sense of relief to be able to talk to other parents about similar issues we have and just to know we aren't alone...that William is "normal" in some sense of the word.
One of the groups is specifically for the Tracheomalacia and parents post videos of their children at various times throughout the day - playing, sitting still, eating, after eating, after a spell, etc... After we listened to a post of a baby girl after she nursed - tears welled in my eyes because William makes the same sounds - and I'm constantly questioning if it's a normal sound for him or does it sound wet? does it sound like aspiration? can he swallow okay? Something as simple as a cough now has 10 other meanings to us and is cause for concern.
I also know William is blessed and is very, very lucky because he doesn't have so many of the other symptoms that can be associated with EA/TEF. As hard as it is to have a baby with special needs, I constantly thank God for William. He is such a happy baby and brings an instant smile to our faces. I cannot imagine my life without him; he was always meant to be here....which is the same way I feel about Norah and Isabella. We, as parents, have been so blessed with the three children and we thank God for them daily.
Sunday, August 28, 2011
Monday, August 15, 2011
Cooler weather
The weather has finally gotten cooler in STL! We had beautiful weather starting last week and it's continuing this week. It's great to get back outside with the kids and let the girls run around. I also think William enjoys the fresh air - he seems to sleep better if we can be outside during the day.
Two weeks ago we went to Grant's Farm with Haley, Larry, and their kids. It was a perfect day and the kids had so much fun. Last week we went to the zoo and the weather was even better! We visited the stingrays and sharks - Norah was willing to put her hand in the water - but not willing to try to pet the animals :) Bella surprisingly wouldn't put her hands in the water! For the first time ever, we were able to make it all the way around on train without tears in the tunnels!
We went to the park this weekend and played soccer with the girls! We had a lot of fun and they loved playing a game just as much as they loved playing on the playground. William enjoyed the walk and the weather - he cooed and slept throughout the morning. I'm looking forward to fall weather so I can carry him in the Moby Wrap - it's nice to be able to move around easier without the stroller, but for now - with the heat and the strong sun - the stroller is best.
Norah starts school next week - she is so excited! We go this weekend to Open House and we're excited to see her teacher and her friends. I think it will be good for the girls to be separate during the day - they seem to get along even better when they aren't together all day long, everyday. We're lucky that - for the most part - they get along really well :)
I think Bella will like to get to be the only big sister home during the day. She loves helping with William and talking to him.
William is growing so much! He is now on demand feeding all the time :) and he's taking roughly 25% of his calories orally. That is such a huge improvement from where we were a month ago. Thanks to his nutritionist, feeding time is enjoyable for him (and us!) and more "normal". He is learning how to nurse better and doesn't need my help regulating as much as he did a few weeks ago. He's trying really hard to laugh and is so close! He is also cooing and mimicking a lot. Poor little guy has started teething and it's causing some problems for him with all the extra secretions and pain. Hopefully the teeth/tooth comes in soon and he can have a bit of a break before the next one comes in.
William is still having "blue spells" - he turns scarlet roughly every other day/every day and has been turning blue about once a week. He started breathing treatments, but those haven't seemed to stop the spells. They have helped with some wheezing he has occasionally. He has follow up appointments next month, so maybe we'll know more then.
We wish everyone a good start to the school year and hope everyone is enjoying wonderful weather like we are :)
Sweet William - pouty face right as I was bending down to pick him up
Norah, Daddy, and Bella playing soccer
Norah - she's getting so big so fast! She learned how to swing by herself this summer!
Our beautiful children (yes, I'm biased!)
Mommy and Bella
Tuesday, July 26, 2011
On a hot, hot, day in July...
This has been a relatively uneventful week :) which by our standards is a very good thing! William's visit to the cardiologist went well and he has a healthy heart. Yea! The downside is William still has "blue spells" and so far adjusting his feeding isn't stopping them. We decided to try the antibiotic route the GI doctor suggested. He'll be subjected to the same amount of antibiotics as if he had an infection. I've read other accounts of children going on this to help with gestational motility, so we'll see if this helps.
It's still REALLY hot in STL so we've been forced to stay inside. Norah and Isabella have been so good even though they've not been able to be outside much. On Saturday, we celebrated Abigail and Jenna's 2nd Birthday and it was a lot of fun! Norah and Bella got to play outside in the kiddie pools and slip-n-slide and make cute flip flops. William hung out with me and was happy there was a ceiling fan to look at as well :)
The weather is supposed to cool down over the weekend, so hopefully we can get some outside summer photos to share!
William loves being on his back -something we just realized because he hasn't been allowed to lie flat. He "dances" and talks so much when he's on his back!
Two mommies :)
Sweet Daddy painting toenails for his little girls.
Three beautiful children :)
It's still REALLY hot in STL so we've been forced to stay inside. Norah and Isabella have been so good even though they've not been able to be outside much. On Saturday, we celebrated Abigail and Jenna's 2nd Birthday and it was a lot of fun! Norah and Bella got to play outside in the kiddie pools and slip-n-slide and make cute flip flops. William hung out with me and was happy there was a ceiling fan to look at as well :)
The weather is supposed to cool down over the weekend, so hopefully we can get some outside summer photos to share!
William loves being on his back -something we just realized because he hasn't been allowed to lie flat. He "dances" and talks so much when he's on his back!
Two mommies :)
Sweet Daddy painting toenails for his little girls.
Three beautiful children :)Sunday, July 17, 2011
Summer
Summer heat has come to STL! The past two weeks have been really hot and this week is no different. (100 plus!) Soo...we're inside most days which makes it hard to have energy burned off for the girls! Luckily, the weekends haven't been as hot as the weekdays and last weekend we were able to get outside and celebrate our good friend Angie's 30th birthday party! Her family threw her a surprise party and Angie was very surprised :) It was at the Millstadt park and was a lot of fun.
Norah and Isabella got to play with bubbles, t-ball, badminton, and kites! They also invented a fun game ;) of running around the field with a jump rope - imaginations are a wonderful thing!!
William enjoyed the warm weather and slept through the party. It was fun to go out as a family - the first time we've made it out as a family of 5 other than to doctor's offices, the hospital, family, or friend houses - and we hope we'll get to get out a little more before summer is over!
Daddy, Norah, and Bella flying a kite.
Mommy, Norah, Isabella, and William
Norah and Bella blowing bubbles
We've been visiting a lot of doctors for William lately. He is having a hard time with turning blue after he spits up or refluxes sometimes. One of the GI doctor's suggested we try lengthening his feeding to 2 hour feeds (vs 1 hour) or medicine. Since he's on a few medicines already, we preferred to try to extend his feeding to see if that helped. Unfortunately, he was just hungry the whole time and was very, very upset throughout the feeding. After trying it for 2 feeds, we went back to 1 hour feeds. Before we try medicine, we're going to visit a cardiologist to see if the hole in his heart closed. The GI doctor said that might be why he has a bluish tint to his skin sometimes.
We also started William's First Steps therapies this week. We have a wonderful OT/Feeding/Speech therapist and a wonderful nutritionist who each come once a week. Since feeding is the most difficult time for William right now, they are both helping to work with him and us to make that a better experience for him. It's really hard when something so fundamental to life is so difficult for your child. All you want to do is help him through it so he can be comfortable.
It amazes us how happy William is (when it's not a feeding). He started smiling and cooing the past week!! It's so much fun when they start to do that! In one of the picture's below, you'll see him looking at one of the animals on his bouncy seat. It's a lion and Norah and Bella loved it too! He loves to talk to us and smile at all of us and has the best expressions when he is cooing. It looks like he is taking after his sisters and will be a talker :)
We're so lucky to have such wonderful children. Norah and Isabella love helping with William and especially love holding him, singing to him, and playing with him. Brian and I were slightly concerned how welcome William would be, but both girls adore him so much. It's interesting because to them all of William's health issues are typical for a baby since they don't know anything else. When they play house, they keep a bulb syringe next to their babies "in case they spit up"and they feed their babies through a g-button! Most of all, they love on their babies, which makes any parent feel good!
William asleep at Aunt Haley's
William talking to the animals on his bouncy seat. All three of the kids loved the lion the best!
Norah and Isabella got to play with bubbles, t-ball, badminton, and kites! They also invented a fun game ;) of running around the field with a jump rope - imaginations are a wonderful thing!!
William enjoyed the warm weather and slept through the party. It was fun to go out as a family - the first time we've made it out as a family of 5 other than to doctor's offices, the hospital, family, or friend houses - and we hope we'll get to get out a little more before summer is over!
Daddy, Norah, and Bella flying a kite.
Mommy, Norah, Isabella, and William
Norah and Bella blowing bubblesWe've been visiting a lot of doctors for William lately. He is having a hard time with turning blue after he spits up or refluxes sometimes. One of the GI doctor's suggested we try lengthening his feeding to 2 hour feeds (vs 1 hour) or medicine. Since he's on a few medicines already, we preferred to try to extend his feeding to see if that helped. Unfortunately, he was just hungry the whole time and was very, very upset throughout the feeding. After trying it for 2 feeds, we went back to 1 hour feeds. Before we try medicine, we're going to visit a cardiologist to see if the hole in his heart closed. The GI doctor said that might be why he has a bluish tint to his skin sometimes.
We also started William's First Steps therapies this week. We have a wonderful OT/Feeding/Speech therapist and a wonderful nutritionist who each come once a week. Since feeding is the most difficult time for William right now, they are both helping to work with him and us to make that a better experience for him. It's really hard when something so fundamental to life is so difficult for your child. All you want to do is help him through it so he can be comfortable.
It amazes us how happy William is (when it's not a feeding). He started smiling and cooing the past week!! It's so much fun when they start to do that! In one of the picture's below, you'll see him looking at one of the animals on his bouncy seat. It's a lion and Norah and Bella loved it too! He loves to talk to us and smile at all of us and has the best expressions when he is cooing. It looks like he is taking after his sisters and will be a talker :)
We're so lucky to have such wonderful children. Norah and Isabella love helping with William and especially love holding him, singing to him, and playing with him. Brian and I were slightly concerned how welcome William would be, but both girls adore him so much. It's interesting because to them all of William's health issues are typical for a baby since they don't know anything else. When they play house, they keep a bulb syringe next to their babies "in case they spit up"and they feed their babies through a g-button! Most of all, they love on their babies, which makes any parent feel good!
William asleep at Aunt Haley's
William talking to the animals on his bouncy seat. All three of the kids loved the lion the best!
Friday, July 1, 2011
Summer Fun and Other Going Ons...
We've had an interesting couple of weeks. Last week, William had two episodes where he stopped breathing. The first was on Tuesday night after his 6:00 pm feeding and he spit up and started to turn blue. We sat him up straight and he turned pink again and was okay. On Wednesday morning, during his 9:00 am feeding (51 ml - I'll always remember that number) he spit up and turned blue. I always thought when people said someone turned blue, it was a figure of speech - but it's not. There isn't an in-between color - it's blue as blue can be. I sat him up like we did the night before, I turned him over on his stomach against my forearm and hit him on the back to try to force anything out, and nothing happened. I told the girls to go to their room, ran to hit the fire button on the alarm pad, and opened the front door. I laid William on the floor and tried to stimulate him, nothing happened so I blew one rescue breath and nothing happened, I blew another one and he coughed and sputtered and started to breathe - Thank God.
By this time, there were all sorts of alarms going off - the house alarm, the apnea monitor, and the feeding pump. It took me a minute to realize all of them and to turn them off. The firemen came and the EMT checked William's lungs and said they were clear. They offered to take us in the ambulance, but since he was pink and breathing, I declined. I called the ENT's office since they told us to call if William stopped breathing and, after scaring the nurses, I was told to take him to the ER.
Brian met me there with William and the girls (who were amazing this whole time and did such a great job of listening. I am so proud of them!) and Brian's parents came to take the girls so they wouldn't have to stay at the hospital since we didn't know how long we would be there. It turned out, the doctor's wanted to keep William there overnight for observation.
On Thursday, we were able to take William home as he didn't have anymore episodes. They aren't sure what happened, which makes it hard to know how to prevent it from happening in the future.
Thankfully, he has had a good week since then and hasn't had any problems. While in the hospital, they put him back on formula, which has upset his stomach again. It's a new formula and seems to be better than the previous one, but it still causes him discomfort.
It amazes me how happy he is though! He is gradually getting to be awake more and more during the day and spends that time cooing and working on smiling (almost there I hope!!) at us. He especially loves looking at his big sisters, who in turn, love being around him and want to hold, kiss, and touch him as much as possible!
Norah and Isabella are doing great. They are loving summer in ways only kids can do - just the simple joy of playing with a water hose or swimming in the kiddie pool - makes them so happy! So far, the weather has been nice enough that we've gotten to spend at least some of the day outside at the park or in the backyard. This weekend is going to be hot but hopefully it will cool off a little next week and we can get back outside!
I hope everyone has a safe and happy 4th of July weekend!
Love,
Em
One of my favorite pictures of our sweet baby - here is his beautiful smile!
Big girl Norah - climbed the rock wall all by herself!
Norah, Isabella, and William celebrating Canada Day!
Bella playing at Kirkwood park in the sprinkler - we used to play as kids too - and both Norah and Isabella LOVED this!! We now call Kirkwood park the Sprinkler Park :)
Norah and Isabella playing with the pink (we also have purple) sand Mimi and Papa sent
We have such happy children!
Cute as a button
Norah and Isabella playing in the kiddie pool at Grandma and Grandpa's
Bella on the swing at Kirkwood
By this time, there were all sorts of alarms going off - the house alarm, the apnea monitor, and the feeding pump. It took me a minute to realize all of them and to turn them off. The firemen came and the EMT checked William's lungs and said they were clear. They offered to take us in the ambulance, but since he was pink and breathing, I declined. I called the ENT's office since they told us to call if William stopped breathing and, after scaring the nurses, I was told to take him to the ER.
Brian met me there with William and the girls (who were amazing this whole time and did such a great job of listening. I am so proud of them!) and Brian's parents came to take the girls so they wouldn't have to stay at the hospital since we didn't know how long we would be there. It turned out, the doctor's wanted to keep William there overnight for observation.
On Thursday, we were able to take William home as he didn't have anymore episodes. They aren't sure what happened, which makes it hard to know how to prevent it from happening in the future.
Thankfully, he has had a good week since then and hasn't had any problems. While in the hospital, they put him back on formula, which has upset his stomach again. It's a new formula and seems to be better than the previous one, but it still causes him discomfort.
It amazes me how happy he is though! He is gradually getting to be awake more and more during the day and spends that time cooing and working on smiling (almost there I hope!!) at us. He especially loves looking at his big sisters, who in turn, love being around him and want to hold, kiss, and touch him as much as possible!
Norah and Isabella are doing great. They are loving summer in ways only kids can do - just the simple joy of playing with a water hose or swimming in the kiddie pool - makes them so happy! So far, the weather has been nice enough that we've gotten to spend at least some of the day outside at the park or in the backyard. This weekend is going to be hot but hopefully it will cool off a little next week and we can get back outside!
I hope everyone has a safe and happy 4th of July weekend!
Love,
Em
One of my favorite pictures of our sweet baby - here is his beautiful smile!
Big girl Norah - climbed the rock wall all by herself!
Norah, Isabella, and William celebrating Canada Day!
Bella playing at Kirkwood park in the sprinkler - we used to play as kids too - and both Norah and Isabella LOVED this!! We now call Kirkwood park the Sprinkler Park :)
Norah and Isabella playing with the pink (we also have purple) sand Mimi and Papa sent
We have such happy children!
Cute as a button
Norah and Isabella playing in the kiddie pool at Grandma and Grandpa's
Bella on the swing at KirkwoodThursday, June 16, 2011
Summer Updates
Starting last week, William began his first round of doctor appointments. On Friday, the OT/Feeding/Speech therapist came to the house for his initial assessment. This is scheduled through First Steps - which is a state run program that assists children who have special needs. So far William will have an OT/Feeding/Speech therapist (she is specialized in all 3) and a Nutritionist. We've also asked for a PT to evaluate his motor skills to make sure he is on track. It is a great program and we met with our family coordinator two weeks ago. She will go back to the team and develop a family plan with the team and us to help William meet developmental goals.
The meeting on Friday went really well and so far William is doing really well skill-wise. He behaves like a 2 week old (now 3 week old) with the exception of the feeding/eating issues. She had a few exercises we can do to help him strengthen his neck muscles which will hopefully strengthen his ability to swallow properly. We've also been doing the exercises they taught us in NICU - so between those, we're doing what we can at this point.
We meet with his nutritionist from First Steps on Monday for his initial assessment. Between her assessment and the information we received from the GI doctor's nurse practitioner, it seems everyone is on the same page - waiting for next week's swallow study to determine the next steps for major adjustments in the feedings and what to do now to help him with current feeding issues.
William is still really uncomfortable during his feedings so they changed his medicine and adjusted his volume of food. Brian and I both think there seem to be a few things going on during his feedings - gas, reflux, and the pain of being hungry and not getting full fast enough. Hopefully the new medicine will help with the reflux pains, and the volume should help with the hunger pains. William is able to do 1 on-demand feeding a day :) which is great because that should also help with gas and hunger issues. We've been feeding him if he gets hungry at the 2-1/2 hour mark, but sometimes that is more frequent than others and starting this week, he's actually sleeping longer at night and going past the 3 hour mark for a feeding! (Any parent reading this understands the joy that extra sleep brings!)
Unfortunately, he is getting granulation tissue around his g-button site. He's had two silver-nitrate treatments to kill the excess skin growth so the button can lie flat. It really seems to bother him, both the presence of the granulation tissue and the removal of it, but after the initial 24 hours after removal - he is happy again.
Overall he is doing really well. He has been gaining weight and is tracking more and more. We've been lucky enough to get outside to the park and for walks, which I think he really likes. He's definitely a true St. Louisian - he loves the heat! He is most comfortable when all bundled up at home and even though he wears a short sleeved onesie on walks, he likes the warmth of the air around him. I did some research and found a great baby carrier - Moby Wraps - which is one of the fabric wraps to carry him around. His therapists recommended we look at them since he likes to be so close to us. It is fantastic! He is all snug and safe and I can have both hands free. I wore it today to the park for the first time, and it was great to be able to snuggle with him and have my hands free to push the girls on the swings and play with them. I recommend them to anyone!
Norah and Isabella are enjoying summer to the fullest! They love getting out to the parks and had such a great time last week when we went to Kirkwood park. Kirkwood has this great sprinkler that runs in the summer. I remember playing in it as a kid and it's great to have our kids play in it too! Kirkwood park is also great because it's shaded all day - so we can spend more time there especially in the mornings, which makes them oh so happy!!
I'll post some pictures next time - until then, have a great week!
The meeting on Friday went really well and so far William is doing really well skill-wise. He behaves like a 2 week old (now 3 week old) with the exception of the feeding/eating issues. She had a few exercises we can do to help him strengthen his neck muscles which will hopefully strengthen his ability to swallow properly. We've also been doing the exercises they taught us in NICU - so between those, we're doing what we can at this point.
We meet with his nutritionist from First Steps on Monday for his initial assessment. Between her assessment and the information we received from the GI doctor's nurse practitioner, it seems everyone is on the same page - waiting for next week's swallow study to determine the next steps for major adjustments in the feedings and what to do now to help him with current feeding issues.
William is still really uncomfortable during his feedings so they changed his medicine and adjusted his volume of food. Brian and I both think there seem to be a few things going on during his feedings - gas, reflux, and the pain of being hungry and not getting full fast enough. Hopefully the new medicine will help with the reflux pains, and the volume should help with the hunger pains. William is able to do 1 on-demand feeding a day :) which is great because that should also help with gas and hunger issues. We've been feeding him if he gets hungry at the 2-1/2 hour mark, but sometimes that is more frequent than others and starting this week, he's actually sleeping longer at night and going past the 3 hour mark for a feeding! (Any parent reading this understands the joy that extra sleep brings!)
Unfortunately, he is getting granulation tissue around his g-button site. He's had two silver-nitrate treatments to kill the excess skin growth so the button can lie flat. It really seems to bother him, both the presence of the granulation tissue and the removal of it, but after the initial 24 hours after removal - he is happy again.
Overall he is doing really well. He has been gaining weight and is tracking more and more. We've been lucky enough to get outside to the park and for walks, which I think he really likes. He's definitely a true St. Louisian - he loves the heat! He is most comfortable when all bundled up at home and even though he wears a short sleeved onesie on walks, he likes the warmth of the air around him. I did some research and found a great baby carrier - Moby Wraps - which is one of the fabric wraps to carry him around. His therapists recommended we look at them since he likes to be so close to us. It is fantastic! He is all snug and safe and I can have both hands free. I wore it today to the park for the first time, and it was great to be able to snuggle with him and have my hands free to push the girls on the swings and play with them. I recommend them to anyone!
Norah and Isabella are enjoying summer to the fullest! They love getting out to the parks and had such a great time last week when we went to Kirkwood park. Kirkwood has this great sprinkler that runs in the summer. I remember playing in it as a kid and it's great to have our kids play in it too! Kirkwood park is also great because it's shaded all day - so we can spend more time there especially in the mornings, which makes them oh so happy!!
I'll post some pictures next time - until then, have a great week!
Monday, June 6, 2011
Park Trip
This weekend, we went to the park before the weather got too warm. Part of the reason was for me to take Norah's 4 year old photos - still unbelievable to me that she is 4! The other reason was just to get some cute pictures of the kids and let them enjoy the playground.
Enjoy our photos!
Norah - one of my favorite pictures of her - our sweet 4 year old
Isabella swinging - one of her favorite things to do at the park
Norah on the swings - contemplating swinging higher!
William wearing his cute plaid shirt and gazing up at the sky
This picture cracks me up and I think captures Isabella's spirit!
Sweet William puckering his lips
Norah and Isabella being nosy (they were watching another little kid play) but is such a sweet picture
Isabella with her beautiful hair flower and a telltale sign of a toddler - band-aids on the knees
Norah done with posing and ready to play!
Enjoy our photos!
Norah - one of my favorite pictures of her - our sweet 4 year old
Isabella swinging - one of her favorite things to do at the park
Norah on the swings - contemplating swinging higher!
William wearing his cute plaid shirt and gazing up at the sky
This picture cracks me up and I think captures Isabella's spirit!
Sweet William puckering his lips
Norah and Isabella being nosy (they were watching another little kid play) but is such a sweet picture
Isabella with her beautiful hair flower and a telltale sign of a toddler - band-aids on the knees
Norah done with posing and ready to play!
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