Monday, December 24, 2012

Tuesday, December 18, 2012

GI appointment - turning a corner?

First I want to say, today was crazy! Owen's GI appointment was at 11am. That means that we have to leave our house by 8am, preferably 7:30/45am to make sure we have time for a little bit of traffic. Now, I know 8am doesn't sound incredibly early to most of you. However, our morning routine with medical supplies/pumps/formula/ect gets a little crazy. To have to do it all before 8am makes me a little crazy. And, of course, as I am setting up Owen's backpack, I drop it. This means that his formula bag popped, and formula when EVERYWHERE! The formula ruined his backpack so I had to go get his spare. I had to get a new formula bag fill it with formula and get into a new backpack so we could hook Owen up. It was a crazy morning filled with cranky kids but we made it :)

In the end, the long trip was extremely worth it today! My mom came with me today, which is awesome! The help is always very much appreciated on a trip to Oakland. It seems like it is 3times the amount of work when I go by myself (which I do often). On the way to Oakland I was telling my mom that I will be happy if Owen's weight is the same as it was last month. I always start to worry about his weight gain on the way to Oakland. It's all about his weight. How much did he gain? Why hasn't he been gaining? What's his feeding rate at? How can we help him gain weight? ect. The whole appointment is based off of the number that the scale says when we get there. I was worried because Owen had been struggling with keeping food down. He has been throwing up more often and we have had to lower his feeding rate. In fact, most of this month he has been under his goal feeding rate. That fact coupled with the fact that he was off a day of TPN a week, I was sure he would weigh less then last week.
When we got there the scale was the high point. He stepped on the scale. . . 34.1 lbs! WHAT?!?! That is awesome! He gained over ONE POUND in a month!!!!! yay!!!!
The doctor came in and said, "Ok, he gained a pound. How about we take him off another day of TPN?"
Now this is HUGE! This doctor is the doctor that tried to push us into surgery to lengthen Owen's bowel. Now Owen is weaning off TPN all on his own. She went on to say that it seems he is turning a corner and his body is adapting wonderfully. She made sure to say that this doesn't always happen but Owen was doing great. This makes me so happy. We had been worried about that surgery. We spent countless nights researching, praying, trying to understand the surgery and trying to grasp the fact that he might need it. Then, Stanford told us to stop worrying about it because Owen would never need it. And now, Now Owen is weaning off TPN without surgery. Without extra hospital time. Without unnecessary drugs and scars. It warms my heart to know that Owen is doing great and heading in the right direction.
Not only is he weaning from TPN, his liver numbers are NORMAL. He has been on TPN for 18 months straight (plus 7 more months of it when he was in the NICU) and it is not effecting his liver at all. They said that his liver numbers look like he has never been on TPN. We are so blessed by this.

There are a few other things exciting about this appointment. Owen has a few meds we push via gtube. They are compound meds that come in liquid form. In Sonora, there are no pharmacies that can make compound meds in liquid form. This has been a huge headache for us. We constantly have to drive to Oakdale (an hour away) to have his meds refilled. We have been doing this for 3 years and have just accepted that this is the way it has to be. Just another thing we have to deal with when it comes to living where we do and dealing with what Owen needs on a daily basis. Well, today I met a new GI physicians assistant. I told her that we needed a new prescription for his meds and she asked me where we get them filled. When I told her that pharmacy was an hour from where we live she asked if we would like to have his meds delivered via mail. WHAT?!?! Since when have they had this option and WHY have I never heard of it before? She called the company and they agreed to deliver his meds! YES!!! Awesome! I asked her if the company was just a pharmacy. She said that it was a medical supply company that delivered many supplies. This sparked my interest because we have been struggling with our current medical supply company which delivers Owen's formula, gtube supplies, and formula bags. Some of you may know, we had to drive to Oakland on black friday because we ran out of supplies when the company wouldn't send us any the day before Thanksgiving even though they were a MONTH overdue! Thank God we had extra supplies but we did run out on Thanksgiving and had to pick some up at Oakland Children's Hospital to get through the weekend. She said she would ask this new company if they would be able to take Owen on as a client. They agreed so I get to speak with them tomorrow! She said she has heard wonderful things about them so I am very excited to get them on board!

Overall, this was a wonderful appointment and it makes me excited to see what's to come in the coming months!

Monday, December 17, 2012

Memory Monday - 6 month photo shoot

In February 2010, Owen was 6 months old. His nurse helped me put some together a mini photo shoot in his crib with a old car seat. We covered it with blankets to make a little backdrop type thing. These pictures represent sooo much. Owen had just survived the unimaginable. He had his bowel re-connection surgery in the beginning of January, got RSV 3 days later, was horribly sick. He required the oscillator and having seizures. When he finially kicked the illness and was looking better, he got parainfluenza which put him back into deep water. We were so worried for our little guy. He just kept getting sick and his immune system was not stong enough to fight it all off.
However, this little trooper sustained it all and kept fighting for life. Look at that beautiful face! Just two weeks after recovering from the flu and he looks so happy!

 
We decided to put a hat on him to cover up his ugly picc line in his head :)



 
In the middle of the photo shoot Owen decided to rip out his NG tube (which wasn't feeding him anything at the time, but instead, draining his stomach because he was still sick). So, we got a couple shots of his clean face!

Thursday, December 6, 2012

Our Anniversary!

Three years ago today Heath and I were married!
It's hard to believe it was only 3 years ago. It feels like we have been through so much together, in marriage, and yet we are only hitting year 3. We have learned and grown so much together. I look back at all we have been through and it makes me proud to say we are still together, still married, we still love eachother, and we love our children dearly.
Looking ahead, I am excited to spend another year figuring out this journey we are on. I pray that we find more time for eachother, more time with our family. I pray that our relationships with God flourish both together and separately. I am excited to carry on and Love my Husband :)

Just us . . . 
Our Journey to our Family . . .
We Make Life Fun . . .

Wednesday, December 5, 2012

Elf on the Shelf

Yes. yes, we are sucked in. Well, at least I am. My boys could care less. I am hoping that, since we have introduced them to the Elf this year, that maybe next year they will understand more about it and be excited. There are many opinions on Elf on the Shelf. Naughty or nice list? santa? God? Jesus? Does it all fit? How do you make it a fun tradition and keep that little kid dreaming and believing without making it seem like a lie. I don't know. When I was little I believed in Santa . . . and God. I never made the connection. "Santa isn't real so God must not be real!" That never occured to me. I don't see it as an issue but it seems to be a main topic for many when I say I want my kids to believe in Santa.

Personally, I love Christmas. I love everything about it. I love making traditions to be passed down for generations. I love Santa, I love family togetherness, I love the music, I love the overall merriment you are aloud to show on a daily basis. I love having a huge smile on my face as I shop, saying as I pass those around me and say "Merry Christmas!" It's magical to me and I want my kids to always have that magical feeling. I don't think it's wrong to believe in Santa or have wonderful traditions. However, I am hoping that it is just simple, merry, magical, and fun for my kids as they grow up.

For now, the Elf on the Shelf is not interresting to my boys, Santa is a scary man mommy makes them sit with and take a picture with, the Christmas tree is a new thing in their living room they get to crawl around and play with, and mommy gives us lots of hot chocolate while she gets starbucks carmel brulee lattes often. I hope soon they will see and feel the magic of Christmas. Until then, The Elf on the Shelf will continue to stick around.

 Our Elf :) When you get your Elf, you are supposed to name him. Well, my kids don't name things yet. I really want to name him Ferdinand but I resist. I am hoping the kids will be able to name him next year :)

Elf played with legos the first night. As you can see below, the kids went straight to him. However, they were really just interested in playing with the legos lol!



Elf hanging out in the Christmas tree :) Notice one of my favorite ornaments next to him - Owen's "first Christmas home" ornament. 2010 was the first Christmas home for both Owen and Isaiah :)

Elf looking at our family Christmas card :) he's awesome! lol


Monday, December 3, 2012

Memory Monday - the surprising normal

These pictures were all taken in November 2009. Owen was three months old. He was just over 3lbs. At this point, the NICU was starting to feel like our normal. We had a routine. I was living in the family house across the street. Every morning was get up, take a shower, pack my bag, grab a pop-tart (for breakfast lol), and run over to see this little guy.
I was there all day. Holding him, reading to him, taking (LOTS) of pictures of him, singing to him, the list goes on. Time for lunch - head to the cafeteria and bring it to the waiting room. I didn't like to eat in the cafeteria because kids anyone could go there. There were many families that would eat lunch there after havign an outpatient apointment across the street. I would often cry watching them just be a family. So, the PICU/NICU waiting room suited me better. I would eat and head back into the NICU. Stay there until dinner, eat, go back into the NICU. I was there often times until late, late into the night. I liked to make sure to stay until shift change. It made me feel better to know each nurse taking care of him. So, there until midnight or so and then back to the family house. Only to repeat the same schedule all over the next day. Again and again
...
amd again.
Did it get tiring?
Yes!
Mentally, physically, emotionally
But it was our normal. We lived it. Every day.
And look at this cutie!
Who wouldn't want to sit and stare at him all day, every day, for 8 months?