I hope everyone had a wonderful Thanksgiving Holiday. Travis and I feel so fortunate and are so very thankful for many reasons. Going through what we have in the past couple of years have made us realize what is really important in life. We are so thankful for Mason and his health. We are also thankful we have such a supportive network of friends and family. We have formed some wonderful friendships along the way.
This week, we took a trip up to Northern Michigan to visit Grandma and Grandpa Ellinger for Thanksgiving. We had a great time and Mason seemed to really enjoy the trip! They even had snow for us to play in!
Mason has really been cruising the furniture moving from object to object without a second thought. He can let go momentarily and balance for a few seconds. He has also been trying to repeat what we say. He even learned to say wow this weekend. He is also saying "turtle", although I am not sure most people would understand what he is saying :)
Here is a montage of pictures from this week. Enjoy!
Friday, November 28, 2008
Sunday, November 23, 2008
New Feeding Plan
We are trying a new feeding plan with Mason. As many of you know, we seem to be constantly revising and tweaking his feeding plan in hopes that his oral intake will increase. Our newest big revisions have come from the CDH clinic and our latest meeting with his Occupational Therapist.
I haven't posted much about this lately because I was afraid I would jinx Mason's progress. Mason has started drinking water, a really big step for him. Each day is different and sometimes he will take only a little, while other days he will drink 2 1/2 ounces. He has also overcome a HUGE hurdle recently. Until recently, Mason would gag and retch if he managed to get any crumbs or food into his mouth. Even pureed food would make him gag. Now Mason is willing to put food into his mouth and take small licks or bites of pudding. He has started to bite into crackers and goldfish and will even swallow the small crumbs left over, while removing the larger pieces from his mouth. Mason still has fear when larger pieces make it into his mouth and he will rake them out. We feel he is getting close to wanting to chew the larger pieces, and overcome this next big hurdle.
Now for the newest feeding plan. I must warn you that this goes into detail and probably won't mean very much to those who don't have tube fed kiddos...
Mason gets 30 ounces of 30 calorie formula per day, or 900cc's. His daytime feeding plan is split into boluses (or large bursts formula). He gets 4 boluses a day with 6 ounces (180cc's) and right now is taking them at a rate of 290 cc's/hr. Each bolus takes about 45 minutes to deliver. At night Mason gets 170cc's of formula delivered at a continuous rate of 45cc's/hr. His continuous feeds take less than 3 and 1/2 hours (since our pump is a little fast at lower feed rates).
This is a pretty big jump from where we were at before. Just two weeks ago, Mason was only getting 5 ounces of formula at a rate of 250cc's/hr. He received 250 cc's of formula at night for 5 hours (at the same 45cc/hr rate).
Our goal this week is to slowly increase the rate so that his bolus takes closer to 30 minutes. Once we get closer to 30 minutes, our next goal is to get him to take 7 ounces of formula (or 210 cc's). Every time we increase his bolus amount, we are removing a portion of his continuous night feed. The reason for this is that the night feeds pretty much zap any hunger he may have during the day.
We still have yet to determine if Mason is having any hunger cycles. We try and space out his boluses by 3 and 1/2 to 4 hours to allow him some time to get hungry. Before each bolus, I offer a sippy and snacks for him to take in orally. He also actively participates in lunch with me and dinner with Travis and I. At these times, we aim to give him experience with the food that we are eating, along with his usual crackers. This helps him to overcome his texture aversion.
Another goal just given to us by his OT is to try and get Mason to drink a little bit of whole milk. He is very willing to take sips of what we are drinking, such as water, gatorade, or milk. We hope to have him start taking whole milk in some measurable quantity. Once he can consume a few ounces per day, our OT will propose a 2-3 week trial of eliminating his dinnertime bolus. The goal here is to allow Mason to develop the connection between hunger and orally satisfying that hunger. Since Mason has been tube fed pretty much his whole life, he was never able to develop the connection that tells him to eat if he is hungry. As long as he is 100% tube fed, his tummy magically fills with formula when he is hungry. The hardest part will be convincing Mason's team of docs to buy into this 2-3 week trial, especially during the winter months. Since he is in the 80% for weight, I feel we might have a good shot at it. The milk he drinks will offset the calories lost by eliminating the bolus (and hopefully help convince his docs to allow us to try).
The biggest challenge for us when it comes to Mason's feeding seems to be his internal anatomy. Normally, we would try and have Mason receive a bolus while playing with food so that he can make the connection that food satifies hunger. However, Mason has some interesting anatomy and cannot tolerate a bolus while sitting upright. Somehow, his stomach does not empty well while his is sitting. He has his docs stumped. We give all boluses in a reclined position and he handles them really well. When he gets his bolus, we try and have him suck a pacifier (although his drive to do this is naturally fading with age) or give him a cracker and sippy cup.
I will post another feeding update in a couple of weeks.
I haven't posted much about this lately because I was afraid I would jinx Mason's progress. Mason has started drinking water, a really big step for him. Each day is different and sometimes he will take only a little, while other days he will drink 2 1/2 ounces. He has also overcome a HUGE hurdle recently. Until recently, Mason would gag and retch if he managed to get any crumbs or food into his mouth. Even pureed food would make him gag. Now Mason is willing to put food into his mouth and take small licks or bites of pudding. He has started to bite into crackers and goldfish and will even swallow the small crumbs left over, while removing the larger pieces from his mouth. Mason still has fear when larger pieces make it into his mouth and he will rake them out. We feel he is getting close to wanting to chew the larger pieces, and overcome this next big hurdle.
Now for the newest feeding plan. I must warn you that this goes into detail and probably won't mean very much to those who don't have tube fed kiddos...
Mason gets 30 ounces of 30 calorie formula per day, or 900cc's. His daytime feeding plan is split into boluses (or large bursts formula). He gets 4 boluses a day with 6 ounces (180cc's) and right now is taking them at a rate of 290 cc's/hr. Each bolus takes about 45 minutes to deliver. At night Mason gets 170cc's of formula delivered at a continuous rate of 45cc's/hr. His continuous feeds take less than 3 and 1/2 hours (since our pump is a little fast at lower feed rates).
This is a pretty big jump from where we were at before. Just two weeks ago, Mason was only getting 5 ounces of formula at a rate of 250cc's/hr. He received 250 cc's of formula at night for 5 hours (at the same 45cc/hr rate).
Our goal this week is to slowly increase the rate so that his bolus takes closer to 30 minutes. Once we get closer to 30 minutes, our next goal is to get him to take 7 ounces of formula (or 210 cc's). Every time we increase his bolus amount, we are removing a portion of his continuous night feed. The reason for this is that the night feeds pretty much zap any hunger he may have during the day.
We still have yet to determine if Mason is having any hunger cycles. We try and space out his boluses by 3 and 1/2 to 4 hours to allow him some time to get hungry. Before each bolus, I offer a sippy and snacks for him to take in orally. He also actively participates in lunch with me and dinner with Travis and I. At these times, we aim to give him experience with the food that we are eating, along with his usual crackers. This helps him to overcome his texture aversion.
Another goal just given to us by his OT is to try and get Mason to drink a little bit of whole milk. He is very willing to take sips of what we are drinking, such as water, gatorade, or milk. We hope to have him start taking whole milk in some measurable quantity. Once he can consume a few ounces per day, our OT will propose a 2-3 week trial of eliminating his dinnertime bolus. The goal here is to allow Mason to develop the connection between hunger and orally satisfying that hunger. Since Mason has been tube fed pretty much his whole life, he was never able to develop the connection that tells him to eat if he is hungry. As long as he is 100% tube fed, his tummy magically fills with formula when he is hungry. The hardest part will be convincing Mason's team of docs to buy into this 2-3 week trial, especially during the winter months. Since he is in the 80% for weight, I feel we might have a good shot at it. The milk he drinks will offset the calories lost by eliminating the bolus (and hopefully help convince his docs to allow us to try).
The biggest challenge for us when it comes to Mason's feeding seems to be his internal anatomy. Normally, we would try and have Mason receive a bolus while playing with food so that he can make the connection that food satifies hunger. However, Mason has some interesting anatomy and cannot tolerate a bolus while sitting upright. Somehow, his stomach does not empty well while his is sitting. He has his docs stumped. We give all boluses in a reclined position and he handles them really well. When he gets his bolus, we try and have him suck a pacifier (although his drive to do this is naturally fading with age) or give him a cracker and sippy cup.
I will post another feeding update in a couple of weeks.
Friday, November 21, 2008
New Blog
We originally created Mason blog to keep our family and friends up to date on his fetal surgery, birth and progress with battling CDH. Since then, his site has grown to help provide information and hope to other families faced with a CDH diagnosis.
Now that we have lots going on in our family and are expecting baby #2, we have decided to create a new blog to keep our family and friends updated on all of us. You can find our new site at http://familyfour-rosie.blogspot.com.
We plan to keep Mason's blog up to date as well, but more specifically related to his progress with CDH. We really don't want to lose site of the information and hope that his page can provide others.
Now that we have lots going on in our family and are expecting baby #2, we have decided to create a new blog to keep our family and friends updated on all of us. You can find our new site at http://familyfour-rosie.blogspot.com.
We plan to keep Mason's blog up to date as well, but more specifically related to his progress with CDH. We really don't want to lose site of the information and hope that his page can provide others.
Friday, November 14, 2008
CDH Clinic - Long Update
Thursday was Mason's big day at the UofM CDH Clinic. Even though he had to wake up early for his appointment, he seemed to be in a good mood for the day.
First, Mason saw the same Physical Therapist that treated him while he was in the NICU. He did an evaluation to see where Mason falls on the charts for his gross motor skills. Right now, Mason is at a level equal to 10 months and 3 weeks. This was not really unexpected news for us, as we are currently working with Early On to try and get him caught up. The therapist thought that if we really challenge Mason physically at home, he may be able to catch up at a faster rate. We will share this info with his Early On therapist to try and develop a more structured program for him.
Mason saw a dietitian next. Overall they are happy with his weight gain and size. He is in the 80% for weight and 75% for height (on a scale corrected for his prematurity). We have a plan to modify his feeding schedule slightly so that he will only get 3 boluses during the day and 4 to 5 hours of continuous feeds at night. It will take us about 4 weeks to get to this goal if all goes well. The plan is the modify it slightly every week until we reach his new goal. The reason behind this new plan is to space out his feeds by at least 4 hours to allow more time for hunger to develop.
Next we saw an Occupational Therapist. It was nice that this therapist has some prior experience with Mason (from last week's appointment). He is showing some very positive signs that he is ready to venture into eating. Lately he has been drinking more and more water and even drank 2 and 1/2 ounces one day last week. He is also willing to explore and taste and variety of foods now. Tonight he even ate 4 to 5 small bites of vanilla pudding, a huge step for him!
Next we saw the Pulmonologist. They are very pleased with his progress so far. His lung function falls within normal range, but on the low side. Given Mason's history, they were not expecting results this good. We are all amazed at how well he has done in this area! The plan is to continue with his breathing treatments until winter is over. In the spring, they feel that we might be able to discontinue them since he does not show any obstructions when breathing.
Next we saw the Pediatric Surgeon. He was very impressed with Mason's progress so far. We reviewed his latest chest x-ray from last month and there seems to be some areas of concern. Mason's CDH was on the right side, so it is difficult to tell what is really going on. We did see some bowel above his liver, but it looks to be beneath his diaphragm. We are hoping that he did not reherniate, but we know this is very common in kids with a patch. Right now, the plan is to take another x-ray in 3 months. We will be watching him closely for any signs that might indicate a need for quicker action.
Lastly, we saw the Cardiologist. Mason had a heart echo on Monday and the results were good. He does not have any pulmonary hypertension at this time. This is pretty much what we expected since he did not have to struggle with this at birth. They had a hard time seeing all of the pulmonary veins and how they returned to his heart. There were many factors that played into this: his age, the fact that he was sedated and he has some strange anatomy in that region (one of the reasons ECMO was difficult for him). The plan is to see the Cardiologist yearly and then get another heart echo when Mason will tolerate it while awake, usually around age 3 or 4. The great news is that he shows no ill effects of having ECMO cannulation through the heart. His heart murmur has also seemed to disappear.
Mason will return to the CDH clinic in 1 year. Until then, he will continue to have individual follow-up appointments in each area. His PT and OT schedule will remain the same.
I have to say how proud we are of Mason. He was one of the sickest CDH kiddos that UofM had and now he is doing great! We were reminded of how much a miracle he really is!! We have received such great medical care from UofM and have such a wonderful network of friends and family that have prayed for and supported us. We have so much to be thankful for.
First, Mason saw the same Physical Therapist that treated him while he was in the NICU. He did an evaluation to see where Mason falls on the charts for his gross motor skills. Right now, Mason is at a level equal to 10 months and 3 weeks. This was not really unexpected news for us, as we are currently working with Early On to try and get him caught up. The therapist thought that if we really challenge Mason physically at home, he may be able to catch up at a faster rate. We will share this info with his Early On therapist to try and develop a more structured program for him.
Mason saw a dietitian next. Overall they are happy with his weight gain and size. He is in the 80% for weight and 75% for height (on a scale corrected for his prematurity). We have a plan to modify his feeding schedule slightly so that he will only get 3 boluses during the day and 4 to 5 hours of continuous feeds at night. It will take us about 4 weeks to get to this goal if all goes well. The plan is the modify it slightly every week until we reach his new goal. The reason behind this new plan is to space out his feeds by at least 4 hours to allow more time for hunger to develop.
Next we saw an Occupational Therapist. It was nice that this therapist has some prior experience with Mason (from last week's appointment). He is showing some very positive signs that he is ready to venture into eating. Lately he has been drinking more and more water and even drank 2 and 1/2 ounces one day last week. He is also willing to explore and taste and variety of foods now. Tonight he even ate 4 to 5 small bites of vanilla pudding, a huge step for him!
Next we saw the Pulmonologist. They are very pleased with his progress so far. His lung function falls within normal range, but on the low side. Given Mason's history, they were not expecting results this good. We are all amazed at how well he has done in this area! The plan is to continue with his breathing treatments until winter is over. In the spring, they feel that we might be able to discontinue them since he does not show any obstructions when breathing.
Next we saw the Pediatric Surgeon. He was very impressed with Mason's progress so far. We reviewed his latest chest x-ray from last month and there seems to be some areas of concern. Mason's CDH was on the right side, so it is difficult to tell what is really going on. We did see some bowel above his liver, but it looks to be beneath his diaphragm. We are hoping that he did not reherniate, but we know this is very common in kids with a patch. Right now, the plan is to take another x-ray in 3 months. We will be watching him closely for any signs that might indicate a need for quicker action.
Lastly, we saw the Cardiologist. Mason had a heart echo on Monday and the results were good. He does not have any pulmonary hypertension at this time. This is pretty much what we expected since he did not have to struggle with this at birth. They had a hard time seeing all of the pulmonary veins and how they returned to his heart. There were many factors that played into this: his age, the fact that he was sedated and he has some strange anatomy in that region (one of the reasons ECMO was difficult for him). The plan is to see the Cardiologist yearly and then get another heart echo when Mason will tolerate it while awake, usually around age 3 or 4. The great news is that he shows no ill effects of having ECMO cannulation through the heart. His heart murmur has also seemed to disappear.
Mason will return to the CDH clinic in 1 year. Until then, he will continue to have individual follow-up appointments in each area. His PT and OT schedule will remain the same.
I have to say how proud we are of Mason. He was one of the sickest CDH kiddos that UofM had and now he is doing great! We were reminded of how much a miracle he really is!! We have received such great medical care from UofM and have such a wonderful network of friends and family that have prayed for and supported us. We have so much to be thankful for.
Sunday, November 9, 2008
Watching Outside....
Things have been going pretty well here. We are now officially in "lock-down". This winter we will not take Mason to any public places, besides Dr. appointments. He has approval to attend playgroup once per week and attend family functions this winter (if all attendees are healthy of course).
Tomorrow Mason will be going in for a sedated heart echo. This is just a follow-up before our big CDH clinic appointment at UofM. It is especially critical for Mason since he had ECMO cannulation directly into his heart (a procedure often used for infants with congenital heart defects), resulting in 3 heart surgeries. Mason was not born with any heart defects, however his anatomy did not allow him to sustain on ECMO the traditional way. Hopefully they don't see anything alarming.
Thursday is our CDH clinic appointment at UofM. They just developed a multi-disciplinary clinic for CDH patients. When we go, Mason will see Pediatric Surgery, Pulmonary, Cardiology, PT, OT and Dietary. We are very excited to see everyone all in one appointment. We are so thankful that UofM has developed this program.
Friday we have our 16 week ultrasound for baby-to-be Ellinger. We have still not decided if we are going to try and find out the sex. Right now we are leaning towards having it be a surprise. I am thinking that curiosity might get the best of us, and we may change our minds later.
We spent most of the weekend at home cleaning up leaves and branches in the yard. Travis and I had a chance to get out to see a Lions game this afternoon. It started out as an exciting game but unfortunately the Lions lost again. Grandma and Grandpa Sennett looked after Mason for us, and wore him out :)
I captured a few good pictures of Mason watching his Dad work outside on Saturday. He loves to stand and look out the front windows.
Tomorrow Mason will be going in for a sedated heart echo. This is just a follow-up before our big CDH clinic appointment at UofM. It is especially critical for Mason since he had ECMO cannulation directly into his heart (a procedure often used for infants with congenital heart defects), resulting in 3 heart surgeries. Mason was not born with any heart defects, however his anatomy did not allow him to sustain on ECMO the traditional way. Hopefully they don't see anything alarming.
Thursday is our CDH clinic appointment at UofM. They just developed a multi-disciplinary clinic for CDH patients. When we go, Mason will see Pediatric Surgery, Pulmonary, Cardiology, PT, OT and Dietary. We are very excited to see everyone all in one appointment. We are so thankful that UofM has developed this program.
Friday we have our 16 week ultrasound for baby-to-be Ellinger. We have still not decided if we are going to try and find out the sex. Right now we are leaning towards having it be a surprise. I am thinking that curiosity might get the best of us, and we may change our minds later.
We spent most of the weekend at home cleaning up leaves and branches in the yard. Travis and I had a chance to get out to see a Lions game this afternoon. It started out as an exciting game but unfortunately the Lions lost again. Grandma and Grandpa Sennett looked after Mason for us, and wore him out :)
I captured a few good pictures of Mason watching his Dad work outside on Saturday. He loves to stand and look out the front windows.
Monday, November 3, 2008
Halloween Fun
We hope everyone had a great weekend. Our Halloween weekend was filled with excitement. On Friday, Mason visited his CDH buddy Riley for a playdate. They had lots of fun. Riley's mom and I dressed them up in their costumes and took a few pictures. I don't think either boys really enjoyed this part, but we sure did :)
Mason's Grandma and Grandpa Ellinger came down for a weekend visit as well. We dressed up Mason and decided to take him to trick-or-treat at a couple of neighbors houses. We didn't take him out any further since it is cold and flu season. We managed to get him out before many other kids were out to avoid germs. We spent the rest of the evening roasting pumpkin seeds and handing out candy.
Now for the pictures you have all been waiting for :)
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