This and That and BIG DAY MONDAY!

Well today we took James to Encanto park where they have rides and paddle boats for some fun. I forgot about this park and how much fun it is. The paddle boats were closed do to a private party but James got to ride on some other fun stuff, cars, tea cup twirl and we tried to put him in these bumper boats but he cried mainly because he wanted to get in the water instead of the boat, not to mention the kid operating the boats was a wee bit scary to James with a crazy mo hawk thing and piercings galore so he was a bit apprehensive to begin with. But I am in a way better about it, because the boats did not have belts in them and my little bugger loves water so much he may have jumped in. We waited in line a while though, so I was a little bumbed but quickly recovered, god works in mysterous ways so it probably was going to be a catastrophe. We had lunch then came home for naps, Oh how I love naps. That is the only thing I miss the most (outside of James of course) about having a job is my naps.

Tonight we might go to boo at the zoo and have James dress up in is Halloween costume, he is going to be spider man and he loves Halloween all the scary stuff make shim laugh in fact we decorated outside a bit and he even has been in his way saying Halloween, and I have been working on the trick or treat, of course I have to be silly and say trick or treat smell my feet give me something good to eat every time I say it and he just howls with laughter which makes you do it even more, because his laugh is so contagious.

Monday is our big day, feeding tube day. All though I am a bundle of nerves, as is my husband we are ready. I have finally got a phenomenal feeding therapist and we are switching OT's the beginning of November who is phenomenal, as well I think the feeding tube will enable us to be more relaxed with James' feeding issues and hopefully give us the time we need to conquer them. We will no longer have to stress as much because he did not eat enough and is not gaining weight. I can not wait for the weight to gain!!!! With that being said I of course am teary eyed. I have spoken with a lot of mom's who's children are now off the feeding tube but were one day in my shoes and have nothing but positive stories with great outcome for there children . So that helps ease the tension of the decision. But I really think this is the best thing for James and us at this time in our life's. So wish us well and I will post after surgery.

I will leave you with some photos to enjoy, just ignore me I am the most un photo genic person on the planet.

Thanks for visiting and all your support. I recently did a magazine article for parents in the NICU life and one of my comments mentioned was blogging and how mush support you can get and how therapeutic it can be, so thanks for that.

Tracy

You don't know LOVE until you have a child!

How many agree? I can not believe how much I love my son. It is just unbelievable how he fills my heart, sometimes it aches with love, sometimes it really hurts with love or angers with love but it never stops smiling with love. He is so amazing in so many ways and everyday surprises me with new amazement. I love being able to be home with him, I love how he still smells like baby and how when I hug him he squeezes me back tight and pats my back. Or how when he kisses me he follows with MMMWA! I love how he repeats or tries to repeat everything I say(got to be careful) I sometimes find myself spelling words because even though he may not say them yet he knows what they mean. I love how he tries to do everything I do, especially when I am cleaning he likes to grab wipes and wipe things or dust, and vacuuming the kids cries when I stop. I love going into a room after he has been playing and finding all the creative things his has done, like throwing my hair clips in the trash or throwing a shoe in the sink. I love hearing the pitter patter of his feet coming down the hall way just when I thought I had escaped to go to the bathroom by myself :) I love how he remembers things that happened days or even weeks ago,or things that are different from before. I love how I can show him something once and he does or tries to do it until he has successfully done it on his own(sometimes). I love his laugh and how sometimes he covers his mouth when he laughs I even love his temper and whining because he is so like me. I love to watch him sleep or play when he does not know I am there, I love it when he dances and tries to sing a song. I love going for walks and how he points and squeels just over leaves blowing down the street, I love how he now says mama water or mama rocko (our dog) And I espeacially love in the mornings when he wakes how happy he is and how he hands me his blanket. I love how sweet he is and well, I guess I love being his mom. I now know how much my parents loved me!!!

BIG FOOT

So I feel horrible, Since James does not grow much in the weight department and his height has been the same for a while, I neglect to think about his feet growing, DUH!! The other night we went for a walk and he had on his sandals every so often he would stop and sit down and grab his foot and say OWE, (one of his new words) I would check for rocks but nothing. So we continued on and he continued to do this every so often, finally I just took his shoes off.

So Monday I decided to go to the shoe store and get his foot measured, are you ready for this he was a size 6, I repeatedly had the sales girl measure them again, because I just could not believe this. Sure enough he is a size 6, his sandals were (Oh I am so ashamed) a size 4 and his sneakers a size 5, I always buy sneakers a little bigger. His sandals did not look to be 2 sizes to Small on his foot although his heel did hang over the back a little. So we bought some new shoes in a SIZE 6! I guess all his calories are going to his feet, oh and his head those seem to be the only thing with steady growth. So I guess he will be this brainy smart child with big feet. (Ha Ha)

Tracy

Surgeon Appt./Feeding Tube Surgery Scheduled!!!

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

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!!!

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.

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

What a great day, I wish I could freeze frame and make the day longer.

Love Tracy

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.