Happy Birthday to our little man Jameson! We can't believe you're 5 months! Thank you for choosing us as your family!
Love,
Daddy, Mommy, and Ania
Life at home
Jameson has now been home for 10 days and things are going great. He has totally adjusted to life at home. Matty and I have gotten a hang of his feeding process, and now that Matty has been back at work for a few days, I have found the easiest ways to get it done by myself. Ania is my little helper and a great big sister. She asks to hold J all the time, and is constantly loving on him with hugs and kisses.
Jameson has already started his follow up appointments. We see his pediatrician once a week and have been back up at Stanford to have his G-Tube checked out. As the area around his tube heals there are a lot of things we need to watch for. If anything looks out of the ordinary to us, we can take a picture and email to his doctor. They look at it and decide if we need to come up or not. We met with his occupational therapist today,who will be helping J with taking a bottle, and monitoring his development. Due to his long stay in the NICU, and being premature, he is behind in some areas, but nothing he cant catch up on. Go up to Stanford again tomorrow to meet with his GI doctor and surgeon for follow up. Since J is not supposed to really go out much and be around crowds, these doctors visits are sometimes a nice way for us to get out of the house. He will start a series a flu shots in October, and then will be okay to go out more. Right now even just a common cold could land him back in the hospital so we have to be careful and take things slow.
Overall though, Jameson is doing amazing. He is gaining weight, up to 10lbs 6oz, 1 pound heavier than when he was discharged. He is taking more from a bottle now too. Not every time, but he has taken 60ml (2 oz) twice, which is 2/3 of a whole feeding. And keeping it down better too. Best of all he is still sleeping though the night!!! He is just soaking up all the love and absolutely loves being held. Makes sense after he spent so much time laying in his crib in the hospital. It is so great having our family together at home. Cant wait for you all to meet our amazing little man.
Jameson has already started his follow up appointments. We see his pediatrician once a week and have been back up at Stanford to have his G-Tube checked out. As the area around his tube heals there are a lot of things we need to watch for. If anything looks out of the ordinary to us, we can take a picture and email to his doctor. They look at it and decide if we need to come up or not. We met with his occupational therapist today,who will be helping J with taking a bottle, and monitoring his development. Due to his long stay in the NICU, and being premature, he is behind in some areas, but nothing he cant catch up on. Go up to Stanford again tomorrow to meet with his GI doctor and surgeon for follow up. Since J is not supposed to really go out much and be around crowds, these doctors visits are sometimes a nice way for us to get out of the house. He will start a series a flu shots in October, and then will be okay to go out more. Right now even just a common cold could land him back in the hospital so we have to be careful and take things slow.
Overall though, Jameson is doing amazing. He is gaining weight, up to 10lbs 6oz, 1 pound heavier than when he was discharged. He is taking more from a bottle now too. Not every time, but he has taken 60ml (2 oz) twice, which is 2/3 of a whole feeding. And keeping it down better too. Best of all he is still sleeping though the night!!! He is just soaking up all the love and absolutely loves being held. Makes sense after he spent so much time laying in his crib in the hospital. It is so great having our family together at home. Cant wait for you all to meet our amazing little man.
Home Sweet Home!!!
After being in the NICU for 86 days, making it though 4 separate surgeries, and giving us multiple grey hairs, Jameson was welcomed home on September 16, 2011. It has been such a long journey, and was happily put behind us as we walked out the front door of the hospital. Twelve weeks of tears came pouring out of our eyes as we brought our little man into the sun for the first time. It is a time that thankfully Jameson will never remember, but something we will never forget.
Day 1
Day 86
Early Friday morning Jameson passed his car seat test, which was our last requirement on the discharge checklist. This test was simply putting him in his car seat for the length of his ride home, and making sure his vital signs stayed OK. We had to wait until 10 o'clock that morning for rounds. As his team of doctors finally made it to his bedside, we waited for his attending doctor to make the final decision for discharge. Jameson had his discharge physical and was all set to go at 11:00, but the pharmacy took their sweet time in getting his prescriptions ready for us. Matty went down to check on them at 11:30 and was told it would be about 15 more minutes. When they still were not ready at 12:15, he stayed at the Pick-up window and refused to let them help anybody else til they got Jameson's ready, he got them 5 minutes later. We finally left the NICU at 1:30 p.m. and headed to Felton. He slept the entire time, making the ride very easy.
He woke up to his Grammy's face and smiled the biggest smile yet and even giggled for her. His eyes were wide open taking everything in for the next few hours. Some of Matty's family came to visit and J just soaked up all the love and being held non-stop. He got a little overwhelmed at certain points that first night, but has since adjusted and is doing amazing.When he woke up the first morning at home, he reached up and touched my face and smiled. It is still hard to believe sometimes that he is really home, seems like he thinks so too. He is taking more milk from his bottle than before, keeping his milk down better, and is sleeping all the time. Matty and I decided to request a feeding pump for nighttime use. It is set to pump 40ml (a little over an ounce) of milk into his stomach per hour from 10pm thru 8am. This makes it so he constantly has milk in his stomach, and does not wake up hungry. It turned out to be a great decision because Jameson only woke up 3 times the first night, and slept all night last night. Having him home and having our whole family together is indescribable.
Again, we want to thank you all for the love and support through this long and difficult journey. We could not have made it through without you.You are all welcome to come by for a visit and meet J. We were advised by his doctors not to bring him around big crowds right away because we need to give his immune system time to adjust to life outside the NICU. We are planning to have a Baby Shower/Welcome Home Party in early October. Over the next few months J has a number of follow up appointments to make sure he is progressing and developing the way he should. We will keep you posted with any news, but if all goes as we hope, it will be smooth sailing from here : )
We love you all and can't wait for you to meet our lil guy!
Day 1
He woke up to his Grammy's face and smiled the biggest smile yet and even giggled for her. His eyes were wide open taking everything in for the next few hours. Some of Matty's family came to visit and J just soaked up all the love and being held non-stop. He got a little overwhelmed at certain points that first night, but has since adjusted and is doing amazing.When he woke up the first morning at home, he reached up and touched my face and smiled. It is still hard to believe sometimes that he is really home, seems like he thinks so too. He is taking more milk from his bottle than before, keeping his milk down better, and is sleeping all the time. Matty and I decided to request a feeding pump for nighttime use. It is set to pump 40ml (a little over an ounce) of milk into his stomach per hour from 10pm thru 8am. This makes it so he constantly has milk in his stomach, and does not wake up hungry. It turned out to be a great decision because Jameson only woke up 3 times the first night, and slept all night last night. Having him home and having our whole family together is indescribable.
Again, we want to thank you all for the love and support through this long and difficult journey. We could not have made it through without you.You are all welcome to come by for a visit and meet J. We were advised by his doctors not to bring him around big crowds right away because we need to give his immune system time to adjust to life outside the NICU. We are planning to have a Baby Shower/Welcome Home Party in early October. Over the next few months J has a number of follow up appointments to make sure he is progressing and developing the way he should. We will keep you posted with any news, but if all goes as we hope, it will be smooth sailing from here : )
We love you all and can't wait for you to meet our lil guy!
Day 83
Jameson is doing amazing and is almost at his full feeds. He is gaining weight and is currently 9lbs. 8oz. Matty and I were able to give him a bath and do his feedings today. We have to show his doctors that we are comfortable using his G-tube as part of the discharge process. He has two tests for discharge he has to pass. They are a hearing test and a carseat test. The hearing test is pretty standard, but the carseat test is designed for babies born before 37 weeks to make sure they can tolerate the ride home from the hospital. Since we live about an hour away, he will have to do about 90 minutes in the carseat with no desaturations. Other than that we are getting closer. We haven't received the official discharge date from the doctors, but we should know by tomorrow.
This picture is after we gave him a bath!
This picture is after we gave him a bath!
Day 80
Jameson is doing great. Yesterday, Jameson started on food after not eating for 72+ hours The doctors are starting slow because they need to slowly stretch his stomach out. Matty and I were able to learn how to feed him thru his new tube. It was pretty easy. We also saw a discharge checklist at his bedside. Which means the end is near! Matty and I are being taught about how to care for the G-tube, CPR, and getting all of our appointments together. Most of his care and nutrition watching will come from his pediatrician. We will see a Gastrointestinal surgeon every 3 months to switch out his G-tube. We also will see an occupational therapist to work on feeding from a bottle, work on muscle tone, and stretching.
We will continue to keep you informed on the discharge process and to when he can come home. Love you all and thanks for all your thoughts and prayers.
Fourth Surgery
Yesterday, Jameson was added to the surgery schedule as an add-on for his 4th surgery. At about 5:30 p.m. we made our way down to surgery. It's a pretty simple and a fairly routine surgery. The surgery lasted for about an hour. He received a Gastrostomy Tube (G-Tube) and a Nissen Fundoplication. The surgery was successful and we're just waiting for him to heal. Recovery is expected to be 5 to 7 days. Once he can show his doctors that he can tolerate his food and gain weight, we can take him home!
Day 1 thru 75 (today)
Matty and I decided to create this blog to give our friends and family the opportunity to know exactly what is, and has been going on with Jameson.
Jameson was born 6 weeks early with part of his intestines coming out of his abdominal cavity, similar to a hernia only completely on the outside of his stomach. Two hours after birth, he was rushed off to Lucile Packard Childrens Hospital at Stanford to await surgery. At two days old he went in for his first surgery. The surgeons removed 6cm of the illiem section of his small intestines, and put them all back into his abdominal cavity. He recovered really well, but was having trouble passing stool and tolerating feedings. About 3 weeks later, the surgeons decided to do exploratory surgery to see if they could find what was causing the problem. When re-examining the area of his original surgery, they found a small hole where stool was leaking out. He was placed on antibiotics for 14 days to cure the infection resulting from the leakage. He progressed very quickly after, tolerating his feedings and passing stools, but started having to work harder to breathe. He has what is called Stridor, basically an underdeveloped airway. In his case they needed to go in and remove some of the extra tissue that was causing a small blockage in his airway and making him work hard to breathe. Almost immediately following this surgery he was breathing easier, but then he caught a cold virus. With his throat healing from the surgery, the subsequent cough from this virus was a big wrench in his recovery. The cough also made it harder for him to take a bottle, and caused him to spit up more than he should have been. When the cough went away he was still having trouble taking a bottle so he had a barium swallow study. Which is where they put an x-ray dye into his milk and while he is swallowing take a bunch of x-rays. During this study they found that his problem was stemming from a really bad acid reflux. They decided that he would need to get a feeding tube inserted directly into his stomach as well as tighten up his esophogus to minimize his reflux. And that brings us up to where we are now. Waiting for the surgery to insert this feeding tube. Since his surgery is not emergency, and since he is doing really well right now, he is not considered a high priority operation. So he keeps getting pushed back until they have time to get him in the operating room. Once he gets the operation, if all goes well as they think it will since it is a fairly common operation, he will have 3-5 days of recovery, then a couple more days to make sure everything is functioning properly, then he will be coming home. It may be that he has the tube in until he moves on to solid foods. We will be working everyday on taking the bottle and he may grow out of the reflux and have the tube removed earlier. He just needs to be able to take a whole feeding through a bottle and keep it all down. Developmentally he is right on track and doing most of the things a full term 10 week old would do. Smiling, recognizing our voices and tracking us with his eyes, supporting his head more and more each day, and even giggled. They say that he may a little behind on some things, due to being 6 weeks early and also because he will have spent the first 3 months of his life in a hospital, but he will catch up over time. There should be no long term effects from anything that he has been through.
Now that we are caught up, we will try to update at least weekly. We want to thank everybody for their love, kind thoughts, prayers and just being there to help us through this long process. We can't wait for you all to meet our little man. Love you all, until next time...
Jameson was born 6 weeks early with part of his intestines coming out of his abdominal cavity, similar to a hernia only completely on the outside of his stomach. Two hours after birth, he was rushed off to Lucile Packard Childrens Hospital at Stanford to await surgery. At two days old he went in for his first surgery. The surgeons removed 6cm of the illiem section of his small intestines, and put them all back into his abdominal cavity. He recovered really well, but was having trouble passing stool and tolerating feedings. About 3 weeks later, the surgeons decided to do exploratory surgery to see if they could find what was causing the problem. When re-examining the area of his original surgery, they found a small hole where stool was leaking out. He was placed on antibiotics for 14 days to cure the infection resulting from the leakage. He progressed very quickly after, tolerating his feedings and passing stools, but started having to work harder to breathe. He has what is called Stridor, basically an underdeveloped airway. In his case they needed to go in and remove some of the extra tissue that was causing a small blockage in his airway and making him work hard to breathe. Almost immediately following this surgery he was breathing easier, but then he caught a cold virus. With his throat healing from the surgery, the subsequent cough from this virus was a big wrench in his recovery. The cough also made it harder for him to take a bottle, and caused him to spit up more than he should have been. When the cough went away he was still having trouble taking a bottle so he had a barium swallow study. Which is where they put an x-ray dye into his milk and while he is swallowing take a bunch of x-rays. During this study they found that his problem was stemming from a really bad acid reflux. They decided that he would need to get a feeding tube inserted directly into his stomach as well as tighten up his esophogus to minimize his reflux. And that brings us up to where we are now. Waiting for the surgery to insert this feeding tube. Since his surgery is not emergency, and since he is doing really well right now, he is not considered a high priority operation. So he keeps getting pushed back until they have time to get him in the operating room. Once he gets the operation, if all goes well as they think it will since it is a fairly common operation, he will have 3-5 days of recovery, then a couple more days to make sure everything is functioning properly, then he will be coming home. It may be that he has the tube in until he moves on to solid foods. We will be working everyday on taking the bottle and he may grow out of the reflux and have the tube removed earlier. He just needs to be able to take a whole feeding through a bottle and keep it all down. Developmentally he is right on track and doing most of the things a full term 10 week old would do. Smiling, recognizing our voices and tracking us with his eyes, supporting his head more and more each day, and even giggled. They say that he may a little behind on some things, due to being 6 weeks early and also because he will have spent the first 3 months of his life in a hospital, but he will catch up over time. There should be no long term effects from anything that he has been through.
Now that we are caught up, we will try to update at least weekly. We want to thank everybody for their love, kind thoughts, prayers and just being there to help us through this long process. We can't wait for you all to meet our little man. Love you all, until next time...
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