Where have you been and What have you been doing.

It has been a while since my last post. Our computer crashed, wow you don't realize how much you miss having your computer. Plus we have all been taking turns on being sick.

James has had this horrible, nasty cough (cold) since last Wednesday. Which of course has caused little to no eating and at the beginning, vomiting. The vomiting has now stopped and he is slowly very slowly starting to eat again. Thankfully, we have the feeding tube, all though I had to cut that back some while the vomiting was occurring. It seemed pointless to give him it all and have him throw it up or make him throw it up. So of course his weight has dropped, it does not take long for him to loose, as of last night he is down to 22.65lbs. Not as bad as we thought it would be, but just last month we were almost 24Lbs. UGHHHH!

I took him in for a chest x-ray, because at first we thought we may have some bigger issues on our hands, because to us it seemed like his cough, choking and vomiting was due to his feeds, (aspiration) but thankfully the x-ray was clear. Then the nose started running and you could tell it was a cold. Oh well peace of mind knowing the x-ray was clear. However our GI nurse did mention that when children with reflux get sick it can aggravate there already bad reflux and make it worse, seeing how I think we had his pretty well controlled before, I agree.

Plus at our last GI appointment, since James was doing so well they decided to change some things, never again will I do what they say, unless we are a 100 percent sure he is ready, (parents know best) nor will we due 2 things (changes at the same time). Such as increasing his volume of feeds and decreasing a medication (reglan). All though we are anxious to get him off his Reglan, If you do it by itself so you know if he his able to tolerate it. But, increasing his amount by 150MLS was to much he started throwing up the increased amount, or was it the weening of the Reglan, see what I mean. We are pretty sure it was the increased amount. He went from 750MLS to 900MLS. Why would they do this when he was averaging almost a pound a month. The increase in volume not only caused him to vomit but he of course did not want to eat. So again we had 5 steps forward and now 3 steps back, such is the roller coaster life with a preemie. But we will eventually get back on track it just is slow, and thats OK, with a preemir everything is done slowly and in it's own time...

I think of our issues, which is eating and gaining weight, (the biggest of our issues anyway) which initself is huge, I have a child that does not enjoy food or eating, who gags and can make himself throw up just at the sight of food or even gag at the mention of food. But then I read about other families and there struggles and ours seems so minor. I guess it helps put me back into place. Not to say I pray on other peoples mis fortunes, but it just centers me and let's me know how blessed we are to have had a 25 weeker and all in all is doing very well. In respect to what could have been. With that being said.....

Please if you would add my blogging friend Shannon and her little man Ashton to your prayer list, I would refer you to her site but it is a private one. They live in Canada and have been in the hospital for well over a month and though have had some success they are still struggling with some pretty big issues.

Hope my readers are doing well and till next time, Peace.
Tracy

HAPPY NEW YEAR 12 days into it!!!!

Here is how we rang in the New Year, eating ice cream sundaes!!! Boy how having a child will make you mellow out! He made it until 11:30pm alomost big guy.



Heres after the big guy left!

We had the Merriest of Christmasses, having a child at Christmas time makes you feel like a child all over again. I had that same feeling I remember from when I was a kid at Christmas time the anticipation. I could not wait for James to get up Christmas morning and see all his gifts that Santa left, He still is talking about the cookies and milk we left for Santa.

Gramma and Pa Pa Santa Claus got this for James, now if he could only ride it! He tries but wants to push the pedals backwards which puts on the brakes. My back is killing me from pushing him around.

On the g-tube end of things, James is doing terrific. The surgery site has finally healed with no more ugly GRANULOMA'S to deal with, a little red at times, but no leakage. It also no longers seems to be painful or tender to him so connecting him to the tube is no longer a battle. He even says tube now. He is now as of last week 22.05lbs and his reflux seems to be better. Our surgeon at the time of our consult stated that 25% of kids with tubes get better, 25% stay the same and the remaining 50% get worse, I tell you I am so pleased with our outcome and so proud of James he is such a trooper and a great kid. I feel we are the 25% that have gotten better! We still have our off days with eating, but, I no longer need to stress over it, because I know that later he will get in his needed calories not to mention I can even bump the caloric intake by adding baby food. It really is easy once it heals and you get the routine down and adapt. We go back to our GI January 29th, so lets hope for another pound.

I see great things to come in 2008 for James and us, I finally feel at ease. Hope everyone is off to a great 2008!!!!

Until next time, Tracy and P.S. James has gone poo poo on the potty a total of 5 times now, still not really recognizing the urge but sometimes during diaper changes or between bath time he will say ca ca and by golly he goes. He goes pee pee to but still just when we initiate it. But hey at least he is interested and has been introduced to the idea. I need to get more serious about it but I feel we still have some time. Or should I go for it since he is interested?????

We have POOP in the POTTY & PICS to prove IT!

So here it is the proof that is James' little poo poo in the POTTY! I am so excited, we have been going pee pee for a little while, but not always on his cue mostly just randomly I place him on the potty and he pee pees but tonight while my husband was bathing him, he said ca ca and my husband asked do you want to go on the potty he said ya and went. I almost missed because I had just got home from work and was changing my clothes when it happened. We made a big to do about it and he got to have some pez candy from his pez dispenser that I just bought tonight on my way home, woo hoo!!!! I hope this is the beginning of more to come. What's my new year resolution HMMMMM! NO MORE DIAPERS SOON PLEASE.

I must recommend a video I heard of through another mom's blog that I think really helps during potty training time. It is called Elmo's potty time and we have been watching it repeatedly so much so that tonight after Mr. James pooped he said ELMO. Oh I must thank ELMO. What a guy.

I know he will not appreciate this photo when he is a teenager but I could not resist.

I hope all who read have a wonderful Christmas and the best for a GREAT NEW YEAR!!!!

James 2007

TIS THE SEASON

James with Santa, I can't figure out why this picture will not cooperate.

James with his OT Rosanne

James in the box.

James and his new robe.

James on a cold day in Phoenix.

James with his license to be so adorable.

James with his steelers garb.

Well my little man has had a cold. I took him to his pediatrician this week and his has a mild sinus infection with the beginnings of an ear infection more so in the left ear. So we are now on amoxicillian for 10 days. His eating of course declined and I never thought I would be so thankful for our feeding tube. He kept his weight and when they weighed him at the doctors he was 22 1/2 LBS of course that was with his clothes and shoes but still they can't weigh more than a pound.

As of today he is feeling well and his appetite is on the mend. This weekend we are going to decorate for x-mas, James first tree here at home, we skipped the last 2 years just because, but I am so excited to see his reaction. We saw Santa this week and as always James was a happy little lark. I leave you with some pics and will talk again soon.

We have WEIGHT GAIN to report!!!

So, today was our follow up at the GI clinic since James' feeding tube placement one month ago today, and I am happy to NO ELATED to report he weighed in at 21POUNDS!!! Now they are registering it as 300 grams gained from the date of the surgery. At check in pre-surgery he weighed 19.4LBS., But when we left the hospital since James had not had anything to eat times 3days except for a slow 20mls an hour he lost weight and when we weighed him at home after discharged out of curiosity (ONLY PREEMIE PARENTS OWN BABY SCALES) he weighed 18.8lbs. Then took ill times two days bringing his weight down to 18.5lbs. So all in all not only did we gain the so called 300 grams but he put back the weight he had lost too. SO THERE!! Can they give him so more credit please!

Any how we are so thrilled to say the least. Now we have a new goal we are to cut back from the 10 hour continuous night feed to 8 hours and gradually increase him by 5mls over an hour every 3 days to reach 70mls per hour times 8 hours, plus the afternoon nap time feed of 70mls an hour. We are to have him at a goal of 750mls (calories) via tube feeding and the rest by mouth.

So far so good, this week how ever was a rough one. James was gaggy at the beggining of the week and threw up his nap time feed yesterday. But this is the first since the tube placement and he has had a much better day today. So I guess this is to be expected every so often especially since it occured prior to the tube. But at least we know he will get more and all we have to do is hook him up. The cutest thing is he now calls the button and tube his baba. He no longer gets a bottle but maybe once in a while since his surgery. I think he has had three or four, but now when I hook his tube to his button he says baba. I never said to him either that this was replacing the bottle nor did I intend to stop, but I did want to and now it just kind of happened. No weaning no problems YEAH! Also,

James has been showing great interest in his potty chair as well as the big potty, so much so that we have been peeing in it 2 to 3 times a day and tonight he told me he had ca ca so we went to the bathroom took his diaper off dumped the dump in the toilet wiped his butt and sat him on the potty and said this is where you do ca ca and pee pee he then nodded his head got down and flushed and said bye bye ca ca. (We then washed our hands) So I think my New years resolution is to get my boy potty trained. Any tips are greatly appreciated. I also think I will buy some pull ups. I have been telling him that once he starts going in the potty regularly he can get spider man under wear or he can wear underwear like daddy in which he responds YEAH!!!!! I am excited too! He is very smart and I think he is ready, I think they learn from repetitions so if we do it often. I don't know first time mom but here we go and go and go!!!!!

So today was a good day and I thank you lord. Our week was hectic with therapies and doctor appointments. This is our schedule now, Tuesday PT, Wednesday Feeding, Thursday Speech and a visit from our early interventionist, Friday OT this week we threw in a visit to the Surgeon because of recurring granulation and today the GI, But such is life of a premature child. Oh and did I mention working 20 hours a week (@ Night) doing Laundry, Now if I could just clean my house too, I so think MOM's RULE!!!

I tell you though I have learned so much in so many ways and I am starting to understand a little of why god chose me to have a premature baby. I think any way, I have always since high school wanted to be an RN, from a CNA in high school, to an MA and caring for my parents and now my son I think this is his way of pushing me a little harder to achieve. Does not have to be so harsh, but OK already, I get it. So once my life becomes a little more balanced and James is in school and seems to be doing well, I am going back to school to finish what I started.

LIVE, LAUGH, LOVE!
Tracy

What a Boy!

Well my James is still doing great. I can not believe what a difference this feeding tube has made this far. Reflux seems better, no vomiting and he is still eating much better than before the tube???? I don't know what it is, but I will take it. I am amazed I totally thought the worst before and thought things were going to go backwards but so far so good YEAH!!!

The only problem we are dealing with severely is granuloma's he has one where they made the cut to place the button it just will not heal, and we are now on our 2nd granuloma in a week and a half. Last one we went to the surgeon's office and they burned it with the nitrate stick. I have found this wonderful web site with all sorts of tips for feeding tubes and the care. I tell you mom's are so SMART. So I am going to try a few. I also have not been placing the gauze pads around the button thinking that not covering would help it, but apparently from what I have read this is a big mistake so I stocked up on gauze pads and found a few other tricks to the trade, that I will be trying as well. Hopefully I can get this solved for him it seems to be very bothersome and painful. But again he is doing remarkably well.

He also has been speaking so well lately. New words are emerging and he is just so smart. He says the appropriate words at the right time, thank you, please, move and just understanding his world around him. If you ask him where daddy is during the day he will tell you (WORK! and it is so adorable. He also is finally getting into books I have been trying for a long time to get himnterested and now not only is he intersted he will bring you a book and he will say BOOK! I spent the other day with a good friend of mine Kelly and her son Aidan and James was saying their names. My friend made a comment to me that made me feel fantastic, she said she can not get over how well James is doing and how she felt he was quite on target for his age. She is a wonderful mom to a gorgeous boy who is 4 years old. We had a lot of fun with them on Friday and can't wait until our next fun day!

Well that is all for tonight and thanks again for staying tuned! Tracy

A little quick update. James is doing really well with his feeds, we have increased him slowly and he is at 45mls per hour, our goal is 50 to 60mls, depending on his toleration of course. I have yet to incorprate the BOLUS feeds (large amount over short period of time) because James has been eating so well. I tell you I did not see this coming, and the old saying if I would have know this then I would have done it sooner. So 18 days in to tube feeding and all is well. He today ate for lunch a half of a PB&J a whole brownie square some milk and bites of my Panda Express/to include some fried rice bites, a whole piece of Orange Chicken, and a quater of crab puff. Not to mention a handfull of crunchy cheetos a little prior to that plus a little ceral at breakfast, I AM OVER JOYED!!!! The other night he ate a whole half of a GRILLED CHEESE SANDWICH!!!!!

We meet with our GI clinic on 11/29 for weight check and evaluation of feeding/tube feeds to include a 2 day diary of all consummation for James. I will let you know the outcome of that. I have some great pics but I need to go get ready for work so I will post those later.

FYI for other mom's with GTUBE KIDS, I have found a tape that is absolutely phenomenal, it is called MEPITAC and it is used with tubes, it does not pull or irritate your child's skin once so ever, and may be re-used repeatedly, thankful for that because it is PRICEY about 15$ a roll(DONATIONS PLEASE :)! I have found this to be the cheapest so far, but it is so worth not having your child scream, cry and shake when removing the tape. As for James' button site it is healing slowly very slowly, still so very sore for the little guy and tends to be red some days and pink other days, not much drainage and so far no granulation's!

Thanks for reading, Love Tracy.

P.S. In regards to our ordeal at PCH, I have put in a complaint through our insurance company and am still working on my letter to the President of the Hospital for their careless actins of my son's well being (MRSA). Just so they are aware and to get it off my chest........ My letter is taking more time than it should but I want it to be effective and written properly. Any english majors out there or writers????? Thanks