So we saw the surgeon yesterday, which went quite well, outside of us being there for 3 hours and me being late to work. Our appt. was for 12:30 and we did not see the doctor until 1:30pm, he met with us for a while and then we had to see the RN for feeding tube education, which was confusing because for some reason she had to show us all of the different feeding buttons even though those were not the kind we were getting. Then off to the surgery scheduling desk to schedule. I was hoping for sooner than later, but they had nothing until 10/29/2007, so there goes our Halloween which is one of my favorites. However I am going to take James to Boo at the Zoo the weekend before Halloween and still get him a costume.
So back to the feeding tube, my husband and I left of course feeling over whelmed to say the least. The doctor had asked us if we felt we had exhausted all efforts of feeding with James prior to this decision and we felt that we have with the exception of going to another state which just is not feasible right now. He agreed that we lack feeding therapist and tend not to have the most intensive therapies available, when comparing to other states. Which is so puzzling because people come from all over for care at Good Samaritan and Phoenix Children's hospitals. He did say he is working on a program. We will be getting the Bard Peg feeding tube. The scary thing to me is what we learned about the care at home, (ie), if the PEG comes out within 2 hours the opening could close, if the Button moves around could make opening larger and the most concerning was how sore she said he would be for the first week or two and having to insert the tube will be discomforting, I wanted to cry. In the back of my head I question are we doing the right thing, but I think we are James has only gained 1lb in 9 months.
Our surgeon shared with us that he had a preemie as well 13 years ago, 26 weeker, who though was slow to gain he gained more than a 1lb in 9 months. He shared some of his son's photos with us and said no one understands the life of preemie parenting unless they are the parents to a preemie. Very comforting to no he has not only hands like god for surgeries but knows the life that goes along with caring for our special miracles. He was so personable and comforting that I have great confidence in him performing surgery on James, again. He is the Surgeon that performed James' PDA and bilateral hernia repair as well as circ. way back in the early days of NICU living. He also went on to explain all the things that could happen to James later if we did not speed up his weight and growth. So I am ready to get started.
Thank you for all your responses to my last post it is helpful to know that I am not alone.
Tracy
Thursday, September 27, 2007
Friday, September 14, 2007
Our second opinion and our next journey
Well it is official, my son James is in need of a FEEDING TUBE. We had our 2nd opinion on Wednesday to confirm the need for the feeding tube. James is just not making progress with gaining weight. Although we do not see any significant problems with development thus far if we do not go forward with this, at the age of 5 or 10years we could have major issues with learning and growth and by then it will be to late.
I was pretty impressed with this new Doctor, and am going to switch care to her, she is a GI through our children's hospital. So we meet with the surgeon 9/26 who has also done James' surgeries in the past while he was in the NICU so some comfort there. The past two days have been pretty tough for me, but the more I think about it and the benefit to James, the better I understand the importance. So I will let you all know as I do with what is going on. Any words of encouragement are greatly needed. I guess it is good we do it now since he already does have the oral eating down just does not eat enough. Any how, they are also going to set us up for intense feeding therapy through children's hospital, after the surgery to help us try and progress more with his oral feeds. He does not have any severe oral aversions, just with his reflux and dysphagia which causes him to only eat the minimum.
Now on to some fun stuff. Today we painted Oh what fun we had. Here are also some pictures from last Sunday FOOTBALL!! ANYONE!!!
I was pretty impressed with this new Doctor, and am going to switch care to her, she is a GI through our children's hospital. So we meet with the surgeon 9/26 who has also done James' surgeries in the past while he was in the NICU so some comfort there. The past two days have been pretty tough for me, but the more I think about it and the benefit to James, the better I understand the importance. So I will let you all know as I do with what is going on. Any words of encouragement are greatly needed. I guess it is good we do it now since he already does have the oral eating down just does not eat enough. Any how, they are also going to set us up for intense feeding therapy through children's hospital, after the surgery to help us try and progress more with his oral feeds. He does not have any severe oral aversions, just with his reflux and dysphagia which causes him to only eat the minimum.
Now on to some fun stuff. Today we painted Oh what fun we had. Here are also some pictures from last Sunday FOOTBALL!! ANYONE!!!
Yes my husband is a huge STEELERS fan so much so one of our spare bedrooms is painted with black and gold steeler colors. Pretty oh so pretty!
Talk to you soon.
Talk to you soon.
Sunday, September 2, 2007
Where do I begin
Let me start by saying how excited and relaxed the past week and a half have been. Since James has been on his new regimen of medicines he has been eating well, and I think actually able to enjoy it too. This morning he had ice cream with ovaltine and after every bite he actually said MMMMMMMMMMM and was kicking his feet with excitement.
We are still on the Reglan, we switched to Prevacid twice a day AM and Pm we have added Zantac twice a day and give him Mylanta in between all of that. So we are constantly giving him something to hopefully keep his reflux at bay and let him eat, enjoy and put on some weight. I don't want to jinx it, but I want to jump and kick my heels. Every night he has been getting fudgesicles, popsicles or ice cream and eating the whole thing. Not to mention eating his food and actually chewing and swollowing instead of chewing a little and spitting out. He has even been eating some granola and blue berries. My husbands says lets think outside the box and give him lots of different things everyday.
My husband is doing awesome with him and was the one to start giving him the Mylanta after speaking it over with our GI. He is so great with James and helps me out tremendously. I am very lucky to have him.
Yesterday I had a great time with my girlfriend Caroline who came out for a visit from California. I went to high school with her and lost touch after 2003. So I met her and her mom for lunch, Pasta and Wine MMMMMMMM, I was kicking my legs too. Then her mom left and Caroline and I did some shopping and got pedicures. Oh how I needed that. Although the lady doing the pedicure nicked my toe, Ouch! Then we came back to my house for her to meet James.
James had a good dinner and
We are still on the Reglan, we switched to Prevacid twice a day AM and Pm we have added Zantac twice a day and give him Mylanta in between all of that. So we are constantly giving him something to hopefully keep his reflux at bay and let him eat, enjoy and put on some weight. I don't want to jinx it, but I want to jump and kick my heels. Every night he has been getting fudgesicles, popsicles or ice cream and eating the whole thing. Not to mention eating his food and actually chewing and swollowing instead of chewing a little and spitting out. He has even been eating some granola and blue berries. My husbands says lets think outside the box and give him lots of different things everyday.
My husband is doing awesome with him and was the one to start giving him the Mylanta after speaking it over with our GI. He is so great with James and helps me out tremendously. I am very lucky to have him.
Yesterday I had a great time with my girlfriend Caroline who came out for a visit from California. I went to high school with her and lost touch after 2003. So I met her and her mom for lunch, Pasta and Wine MMMMMMMM, I was kicking my legs too. Then her mom left and Caroline and I did some shopping and got pedicures. Oh how I needed that. Although the lady doing the pedicure nicked my toe, Ouch! Then we came back to my house for her to meet James.
James had a good dinner and
What a great day, I wish I could freeze frame and make the day longer.
Love Tracy
Tuesday, August 28, 2007
Where to begin
Well, we had our GI appointment, Monday, and the same. Except we now are on Zantac which we were when he was in the NICU and home for a little while. We also are giving him Mylanta in between meals. I feel like MEDICINE WOMAN. This is our schedule, AM Prevacid, Reglan and Mylanta, Pm Reglan,Zantac and Mylanta, Dinner PM, Prevacid, Reglan and Zantac. No wonder he does not want to eat his whole day is MEDICINES. But if it works then it's fine.
Today was a great day eating wise, well the best in about a month. He actually had a pretty good lunch and a hearty dinner including a bowl of vanilla ice cream with ovaltine on top, my husbands creations.
Tomorrow we go for a barium swallow study. We see another GI Doc next month for a 2nd opinion and then we decide on the feeding tube. I am more at peace with this idea as well as my husband. Especially when I read other blog mom's post about blenderized diets, I would love to be able to feed James more healthy fattening foods. But we are going to try and manage his reflux with meds and hopefully get him to put on some pounds. There were recent talks of doing a Fundo but after lots of research and talking with another mom and our GI I don't feel James is in need, he does throw up but it is not our main problem and is only once in a while. It is my understanding that the Fundo is for severe vomiting and life threatening issues. Although James weighing only 19.12lbs and at the beginning of this year January was 18.4lbs. is severe and life threatening for growth reasons I strongly do not think a fundo will help this issue. The feeding tube however may be a good idea. One of which they should of done before leaving the NICU, But can't go back i time. So I hope what ever decision is made it is the correct one. But I would relish the day I don't have to hear the word failure to thrive and WEIGHT GAIN UGGGG!
Other than that my job is going really well and it has been the best thing for me. I also got my first pay check already woo hoo, only a weeks worth so it is pretty much gone, I need to learn to budget. But most of it was spent on my little man, a new toy, like he needed that. It is so funny how we change when we have children, I used to be very selfish, I guess because I could but now when I go to the mall or such I am looking to buy James stuff no longer me. Funny, I love it though and can't wait until CHRISTMAS, one of my favorites.
I have a girlfriend coming out this Labor day from California, we went to high school together. I can't wait to see her it has been a while. I need a girls night out.
Thanks Tracy.
Today was a great day eating wise, well the best in about a month. He actually had a pretty good lunch and a hearty dinner including a bowl of vanilla ice cream with ovaltine on top, my husbands creations.
Tomorrow we go for a barium swallow study. We see another GI Doc next month for a 2nd opinion and then we decide on the feeding tube. I am more at peace with this idea as well as my husband. Especially when I read other blog mom's post about blenderized diets, I would love to be able to feed James more healthy fattening foods. But we are going to try and manage his reflux with meds and hopefully get him to put on some pounds. There were recent talks of doing a Fundo but after lots of research and talking with another mom and our GI I don't feel James is in need, he does throw up but it is not our main problem and is only once in a while. It is my understanding that the Fundo is for severe vomiting and life threatening issues. Although James weighing only 19.12lbs and at the beginning of this year January was 18.4lbs. is severe and life threatening for growth reasons I strongly do not think a fundo will help this issue. The feeding tube however may be a good idea. One of which they should of done before leaving the NICU, But can't go back i time. So I hope what ever decision is made it is the correct one. But I would relish the day I don't have to hear the word failure to thrive and WEIGHT GAIN UGGGG!
Other than that my job is going really well and it has been the best thing for me. I also got my first pay check already woo hoo, only a weeks worth so it is pretty much gone, I need to learn to budget. But most of it was spent on my little man, a new toy, like he needed that. It is so funny how we change when we have children, I used to be very selfish, I guess because I could but now when I go to the mall or such I am looking to buy James stuff no longer me. Funny, I love it though and can't wait until CHRISTMAS, one of my favorites.
I have a girlfriend coming out this Labor day from California, we went to high school together. I can't wait to see her it has been a while. I need a girls night out.
Thanks Tracy.
Saturday, August 18, 2007
James, James and more James
James using his saftey glasses to pertect his head. He wore these for a good 1/2 hour until I busted out the camera!!! then he got mad in his cute little way.
James brushing his teeth. sorry I don't no how to rotate.
And yes he finally got a job at HOT DOG ON A STICK, so now he can by his medicines, diapers and pay his Co-Pays at the Doctors.
James brushing his teeth. sorry I don't no how to rotate.
And yes he finally got a job at HOT DOG ON A STICK, so now he can by his medicines, diapers and pay his Co-Pays at the Doctors.
Alot can happen in a week!
So, I have a week of my new job under my belt. Things are going really well. I am catching on quick and feel real comfortable with everyone. So YEAH!
James had his GI appointment on Monday, and of course same ol' same ol'. Does not weigh enough and talks of a NG tube and now fundo. I don;t think so. First off how in the world would you do a nose tube on a very strong, determined, 2 year. I can not even suck boogers out of his nose when he can't get them all out by blowing. Do you really think he his going to leave it in there if I was successful in inserting through his nose. NOOOOOO! These doctors sometimes you want to smack them upside the head and say do you have children? As far as the fundo, I know my son has reflux and it his hindering his weight gain, but I have read alot about the fundo and I just don't like the idea of if you have to throw up you can't so it just stays there. Speaking of which he does not throw up very often unless of course he is sick. When he does throw up it usually is because of something he is eating got caught or occasionally on his medicine, I know it is great for reflux and if we can;t get weight on him like we should I would think about a feeding tube in the stomache with out a fundo!!! So cross your fingers. We are going to see another GI for a 2nd opinion as well as a dietician/nutritionist who by the way specializes in preemies!!! Hard to come by. So we will see.
Tuesday he had a hearing test. He was so good throughout the whole testing. I was thinking he would not be cooperative, do to them having to stick things in his ear, but he was great and past with no significant problems. Our Neruologist ordered this test just to make sure for speech he had no hearing issues. Since he is behind in speech. So another YEAH!
Friday we had our 2 year old well check. Which went as I predicted. Weight 5th %, Length 30th% and Head 25th%. At least we are marks ont he CHARTS, which I just want to rip to shreds!!
We have finally found a new Physical therapist, Speech therapist/Feeding so it was a good break while it lasted. But, I am anxious to get started. Our OT mentioned to me again that at 2.9 years of age he will be going to preschool, I think I had a heart attack. That is only 8 months away. OMG can I stay with him. James does not leave my side unless he is with my husband, my good friend or occasionally my mother-in-law, but if I can take him with me, ie: the dentist, hair cut etc. he is always with me. I guess it shall be good for the both of us.
I just worry he has been through so much to be alive I can't let myself depend on someone else to care for his well being. I am afraid. I have already decided he is not going to drive until he is at least 30 something.
Well, hope everyone is well. I enjoy reading all your blogs and your miracle children. Tracy
James had his GI appointment on Monday, and of course same ol' same ol'. Does not weigh enough and talks of a NG tube and now fundo. I don;t think so. First off how in the world would you do a nose tube on a very strong, determined, 2 year. I can not even suck boogers out of his nose when he can't get them all out by blowing. Do you really think he his going to leave it in there if I was successful in inserting through his nose. NOOOOOO! These doctors sometimes you want to smack them upside the head and say do you have children? As far as the fundo, I know my son has reflux and it his hindering his weight gain, but I have read alot about the fundo and I just don't like the idea of if you have to throw up you can't so it just stays there. Speaking of which he does not throw up very often unless of course he is sick. When he does throw up it usually is because of something he is eating got caught or occasionally on his medicine, I know it is great for reflux and if we can;t get weight on him like we should I would think about a feeding tube in the stomache with out a fundo!!! So cross your fingers. We are going to see another GI for a 2nd opinion as well as a dietician/nutritionist who by the way specializes in preemies!!! Hard to come by. So we will see.
Tuesday he had a hearing test. He was so good throughout the whole testing. I was thinking he would not be cooperative, do to them having to stick things in his ear, but he was great and past with no significant problems. Our Neruologist ordered this test just to make sure for speech he had no hearing issues. Since he is behind in speech. So another YEAH!
Friday we had our 2 year old well check. Which went as I predicted. Weight 5th %, Length 30th% and Head 25th%. At least we are marks ont he CHARTS, which I just want to rip to shreds!!
We have finally found a new Physical therapist, Speech therapist/Feeding so it was a good break while it lasted. But, I am anxious to get started. Our OT mentioned to me again that at 2.9 years of age he will be going to preschool, I think I had a heart attack. That is only 8 months away. OMG can I stay with him. James does not leave my side unless he is with my husband, my good friend or occasionally my mother-in-law, but if I can take him with me, ie: the dentist, hair cut etc. he is always with me. I guess it shall be good for the both of us.
I just worry he has been through so much to be alive I can't let myself depend on someone else to care for his well being. I am afraid. I have already decided he is not going to drive until he is at least 30 something.
Well, hope everyone is well. I enjoy reading all your blogs and your miracle children. Tracy
Wednesday, August 8, 2007
I GOT A JOB!
So I went on an interview last Thursday at an Urgent Care center in Scottsdale. They called on Monday and offered me the job. Excited yes, nervous oh yes, It has been 2 years since I last worked. I am looking forward to it though. It is only for 4.5 hours Monday through Friday from 4PM to 8:30PM, so I will still be home in time to tuck my baby in to bed, if things go right I will just miss dinner and bath, that it itself will be a break. I like bath time though but dinner is exhausting.
I am looking forward to the interaction with many different people, I am a big people person. I also will be happy to take a shower everyday and do my hair and wear make-up again. Not that I don't bathe, but most of the time if we don't have plans I don't even change out of my pajama's. My poor husband must just be so attracted to me, HA HA. But seriously, I am just lazy, plus I usually get thrown up on, or food thrown at me or well you know, so why bother, It sure makes doing laundry a breeze. I have a uniform I will be wearing so that is a blessing in itself, how easy, the only thing is there are 5 different colors I have to remember to wear for that particular day, hopefully I don't wear blue on khaki day. I have worn different shoes before same color just different style.
I am ready nonetheless, At least I think so. I think it will be good for my husband and James, not to have me here. when we are both home James is still all about me. So they need to have some father, son time. We are always together, James and I and once and a while my husband will take James over to his father's house or to the park but usually we all go as a family. Especially since I am usually cooped up in the house all week, Heck I get excited just going to home depot in the middle of the week, I see it as an outing.
So wish me luck. I start Monday 8/13/07. I am sure I will have days where I say WHAT WAS I THINKING, but all in all it will be good for me and I can handle 4.5 hours it will go by quick. Oh and the money will be nice too, living on one income has been a challenge, but my the things you give up not realizing how much you were spending before. So some money to help out here and there and maybe a pedicure once in a while more lunches with friends and some more activities for baby. YAHOO!
I am looking forward to the interaction with many different people, I am a big people person. I also will be happy to take a shower everyday and do my hair and wear make-up again. Not that I don't bathe, but most of the time if we don't have plans I don't even change out of my pajama's. My poor husband must just be so attracted to me, HA HA. But seriously, I am just lazy, plus I usually get thrown up on, or food thrown at me or well you know, so why bother, It sure makes doing laundry a breeze. I have a uniform I will be wearing so that is a blessing in itself, how easy, the only thing is there are 5 different colors I have to remember to wear for that particular day, hopefully I don't wear blue on khaki day. I have worn different shoes before same color just different style.
I am ready nonetheless, At least I think so. I think it will be good for my husband and James, not to have me here. when we are both home James is still all about me. So they need to have some father, son time. We are always together, James and I and once and a while my husband will take James over to his father's house or to the park but usually we all go as a family. Especially since I am usually cooped up in the house all week, Heck I get excited just going to home depot in the middle of the week, I see it as an outing.
So wish me luck. I start Monday 8/13/07. I am sure I will have days where I say WHAT WAS I THINKING, but all in all it will be good for me and I can handle 4.5 hours it will go by quick. Oh and the money will be nice too, living on one income has been a challenge, but my the things you give up not realizing how much you were spending before. So some money to help out here and there and maybe a pedicure once in a while more lunches with friends and some more activities for baby. YAHOO!
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