Isaiah is ONE!

This day last year we were blessed with a 39weeker! Our healthy baby boy arrived at 9:13pm. That makes him exactly one year, one day, and 10 minutes younger than Owen. He came out healthy and beautiful! We were so happy to have a beautiful little boy that would get to come home with us without spending any time in the hospital. We are truly blessed.

Isaiah means "salvation from God." God delivered Isaiah away from harm as he blessed us with 39 weeks of pregnancy! His name is so appropriate for his little life.

Isaiah is such a happy little boy. He has some crazy energy and won't stay still but we love it! He is full of life and full of joy! He completes our family and brings so much happiness to our lives.

We love you Zay Zay!

a year of pictures


Happy 1st Birthday Crazy Boy!
We Love You!

Happy Birthday to my amazing 2 year old!

Today is Owen's 2nd Birthday! I can't belive it has been two years. . . what a whirlwind! We were so unprepared on that day. Looking back I think, how stupid! Of course those back pains I was having all week were contractions! But you don't think like that, especially at 25 weeks pregnant. August 28, 2009 was a scary day, happy day, emotional day. We are so blessed that Owen made it. He is such a strong little guy and we are so thankful.

His journey has certainly not been easy. It will continue to be an uphill battle for Owen. But, today is not about that uphill battle. Today is about this precious MIRACLE! We are so proud of you little man! Today we celebrate life, Owen's Life! He is such a precious little boy and he deserves to celebrate life and live in each moment!

month by month . . .

Happy Birthday Owen

You Are 2!

10 Things I LOVE about Owen

1. I love your smile

Your smile is infectious! When you smile, everyone around you smiles! You bring joy to everyone who meets you. We are blessed to know you

2. I love your expressive personality

You wear your emotion on your sleave already. You are good at showing everyone just what you think or feel. Even people who are just meeting you can understand what you want and what you are thinking! Even though you don't talk with words, we all know you can communicate! hehe

3. I love your kisses

Your kisses are so precious! You love your family and you are not afraid to show it! When I ask for a kiss, I love how your eyes light up as you tilt your head up and lean forward . . . and you refuse to go the whole way! You make us all earn your kisses ;)

4. I love that you can be happy wherever you are

You have been in the hospital the majority of your little life. However, you don't let that get you down. You are happy no matter what. In the hospital, not even 1 minute after a nurse is done poking you, you can go right back to laughing and playing with your mommy. You let us know that nothing can get you down and you make the best of every situation! You may not know it, but you lift mommy up whenever she is bummed you are in the hospital again :)

5. I love that you HATE grass!

I think it is hallarious how you have reacted to grass! Mommy hated grass as a child and can sympathize with you each time you scream when the grass touches you at all. You are CLEAR about what you like and what you don't and I love it!

6. I love how quickly you catch on

Not even a week of our new routine with TPN and you have got it down! You take off the arm sleeve right when mommy starts to mix the TPN. Then you pretend to scrub the hub. Not only that, you dance to the song in your head that you know I will sing when I start to scrub the hub! We know that you know whats going on . . . there is no denying!

7. I love when you dance

You dance whenever you hear music. You love to dance and you have taught your brother to do the same! hehe

8. I love that you love to sing in church

You may not love to sit through the sermon but you participate through all the songs we sing each week! You sit on the bench holding your song book and watch the song leader. You then begin waving your arm like the song leader does and sing! You don't really like when the song is done and you scream. Everyone laughs and you love to be the center of attention so you continue singing. What a ham!

9. I love how you play with your little brother

It is clear, your brother can get on your nerves! I often find you hitting him because he has been a bully to you for the last time! He takes your toy and you are NOT happy! But, you still love him. You share with him, you try to feed, him, you pet his head, you try to pick him up, and you kiss him :)

10. Most of all, I LOVE that you are here with me and daddy!

Thank you Owen, for filling our lives with joy, laughter, and sometimes, even tears!

We Love You Little Man!



Feelings

Lately all I can do is feel. Think. Feel. There are many things up in the air with Owen. When you leave the NICU, the tornado is supposed to be over(some people call it a roller coaster but I think tornado fits much better). The ups and downs - the brick walls and drops from 100 story buildings - you think they are all behind you. It seems Owen is hitting a few more. He is doing really well on TPN. He isn't sick, he's not in the hospital, he is starting to walk, he is gaining weight. But there are still so many things up in the air. So many decisions to make. The past couple days I can't help but cry. I guess I cry because I feel like the weight of the world, or at least Owen's world - Owen's future - is on my shoulders. Owen is in no immediate danger. He is living life and he's a happy baby. But his future is so uncertain. In the next 6 months, Heath and I will need to make some pretty huge decisions that might affect Owen in a big way - or maybe not. The problem is, we just don't know.

With all of this lingering in my mind, I was contacted via Owen's Miracle facebook page, by a young mom currently in the NICU. She asked, "How do you survive the NICU?" This brought me back - back to a much different time. I began to look at pictures of Owen in the NICU. I began to think of the day to day life I led while Owen was in the NICU. Then, I came across a note I wrote. It hit me hard.
Here it is . . .

Tomorrow . . . Bittersweet

Tuesday, February 2nd, 2010

There is a baby in the ICN named Kylie. She is beautiful and was born on Oct 31, 2009. She was a twin but her brother, Alex, did not make it much past their birth. Their mother and I have become such close friends. Kylie has been through a lot. Her mother and I joke about Owen and Kylie being boyfriend/girlfriend :) lol

Tomorrow Kylie will get into a car seat and go home with her mommy and daddy!!!!! I am so thankful she is doing so great! Tomorrow will be bittersweet for me. I am so happy shi is healthy and gets to go home with her family. However, it just reminds me that Owen is not. I know he will eventually but he still has a long way to go. I feel bad that I feel this way. I am so happy for her parents and I want to be there to see them leave but I cried today.

I look at what I am saying and I feel horrible. I think about the times when the doctor told us "your baby will probably not come out of surgery alive" or when the surgeon said, before his second surgery, "he will make it through the surgery but he won't make it much past that". We are so blessed to have such a fighter. It could be so much worse.

So, I say this "Thank you Lord for blessing us with such a strong baby boy. Please help me to stay positive and remember that every day is a gift. We are not promissed tomorrow. Owen is not promissed tomorrow but you have given him to us today. I pray that I will remember those words every day I get to see him alive and praise You Lord for that."

Owen is now the oldest baby in the ICN. While that is hard because we have been here so long, I am reminded that we could have only been here a few hours. This hospital, this place, this place I want to leave so badly, has saved my baby and kept him alive. I will be forever grateful. I may complain about being here every once in a while but deep down I am thankful I am here with my son who will someday come home with his mommy and daddy.

I believe I need to bring myself back to this. I need to take a step back and see the whole picture. I will never stop being scared of making the wrong decision or stop being scared of losing Owen. However, I will strive to live in the moment, stay positive, fight for my son, and know that we are not promised tomorrow and we should know we are blessed with today. I think I am going to write the portion I wrote in green on my wall next to my calendar. Remember that life is precious and be thankful for every minute of it.

Walking Boys!

So, I officially have two walking boys now! Owen started walking on July 25, 2011 as I said in an earlier post. He was just taking a few little steps back then. Now he is walking all over the place! I have a video and will post it below!

What do you think?

A Little Bit of Summer

Our family hasn't had much of a summer this year. We have spent the bulk of summer apart from each other as Owen has been in the hospital for a majority of it. The other part of summer has been spent recharging and then being sent to the hospital again. We recently had a GI visit that was filled with some not-so-good-news for Owen. Not terrible news but news that has left us feeling stressed, helpless, and worry filled. We are unsure of which direction we are supposed to take. However, I am still processing it and I am not ready to put my thoughts out there.

Our family got a much needed break today. Heath spent the morning working. However, he got off work at 3pm leaving us with time as a family in the afternoon. It was a beautiful day and the kids had a very good nap right before Heath got home. So, we decided it was time to enjoy the outdoors. We took the kids to the park. Neither of them have ever been to a park! Owen doesn't really like outside very much, mainly because he hates grass. It turned out to be a very good afternoon!

Daddy and Isaiah
Heath decided to swing with Isaiah on the 'big kids' swing while we waited for the baby swings to be free. Isaiah was ok at first but then wanted down!



Both of the boys loved the swings! Owen wouldn't get out of it. All he wanted to do was swing. Isaiah wasn't so sure about it at first. Heath and I thought he was going to tip it over and fall out. Luckily, he didn't fall out but there was a point when he almost did. Owen liked to go really high. Heath would stop him by grabbing his legs and then let him go. Owen thought that was so funny!

 

When we moved onto the jungle gym, the boys first hung out at the very bottom. They kept going up and down that first step. Isaiah was crawling all over the place and it was hard to keep him under control hehe. Owen was more calm but was still very excited.

 

The Slide

I thought the slide would be an exciting part of the jungle gym. I told Heath to go down the slide with Isaiah. However, Isaiah didn't seem to excited. In fact, when they got to the bottom, he just walked away - not excited at all. Owen was the same way. Go figure - swings are way more exciting then slides

Our Little Explorers

Once they got used to the jungle gym, they were crawling/walking all over the place. It was really hard to keep up with them. There were some parts of the jungle gym that were very dangerous for them. They are not old enough to go on the jungle gym by themselves, but they sure had fun! Before this family outing, I thought I would be able to take the boys to the park by myself. I am glad I didn't attempt that hehe.

The Grass

We already knew Owen didn't like grass and that Isaiah didn't really care either way. We tried to get Owen used to the grass but he just would not let us put him down! I can't blame him - I have never really liked the feel of grass. At his age, my mom said I would cry if I had to sit in grass. Well, Owen is just like his mommy! He spent his time on the bench and Isaiah had fun running, sitting on, and eating the grass lol

All in all, it was a wonderful family afternoon!

I am so happy we finally got to have a nice outing all together





HPN Awareness Week

This week is HPN (or TPN) Awareness Week. I have been participating (or at least reading) on The Oley Foundation's facebook page. They have been posting a new question each day. I wanted to share the questions so far along with some of the answers just to give some of you an idea of what it means to be dependent on HPN.

1. What you want people to know about IV nutrition or your routines. Are there misconceptions you’d like to address?

"That those on HPN are super heros - 365 days of the year with no time off for good behavior - every daily plan has to take into account hook-up and un-hook - yet we constantly see smiling faces who make this work for them - they are not slowed down or deterred and continue life that most take for granted."

 

"That preparing TPN is a non-negotiable part of my day. I'm getting pretty good at planning around it and doing it on the go, but that doesn't change the fact that my son's TPN must be running at 6 p.m. every day, no matter what else anyone else is doing. I will refuse phone calls, be late or leave early, leave cleaning undone,turn down invitations and otherwise put other things aside to make sure that this is done. I don't do it to be rude."

 

"I resisted my Dr.'s discussion of TPN for a long time. When it became an undeniable fact that I needed nutritional support due to intestinal failure I 'gave' in. In my mind TPN was an 'end of life' therapy, not the 'life saving' therapy it really is. I gained 40 lbs. in the first two months...and felt better than I had in years. I will always need this amazing therapy and don't feel hard done by this. I'm just thankful for a new lease on life. Thank you Oley for your help and support."  - This post made me cry. This is exactly how I felt about TPN and was so against Owen getting it. Now that he has been on it for a month, I am sure that it is saving his life. It is making him healthy enough to fight off the little things and giving him a chance to grow.  

2. Can you describe a positive experience you have had because of HPN, and what made it positive?

 

"My daughter has so much more energy when she is receiving TPN....her skin is brighter, she is happier, she has gained some weight, she isn't dehydrated. Has made a big difference for us!"

"We learned to know what is most important in life and not fret the small stuff. But over all the best thing is to have met friends and caring doctors that otehrwise we would not have ever known. We have formed friendships that will last forever but also our kids have made friends and together who better to know the ups and downs we go through then thiose who walk the same journey"

3. Can you describe a negative experience that you have had because of HPN and what should have happened to prevent that?

"I was sent home on HPN without having the proper medical personal in place to oversee the nutrition aspect of it all. My PC contacted Boston and thankfully some accepted to be in charge of the formula. Also my first visiting nurse group had tooooo many patients and I wasn't receiving the proper care. We replaced them!! So many issues... not enough space!!!"

 "Line infections, and problems with homecare with threats to provision........"

Owen "all hooked up"

This is what he does when I say, "Show me your picc line."

what a cutie :)

Journals for Owen's 2nd Birthday NICU delivery

 We will be donating Journals for Owen's 2nd Birthday! We will need all the help we can get due to Owen being in the hospital. Please spread the word so we can collect 70 journals before August 28th! Thank you all!

We will be delivering to Oakland Children's Hospital NICU and Doctors Hospital NICU in Modesto on August 28th!

Can you believe Isaiah will be 1 and Owen will be 2 this month?

I thought I would write a few updates on how the boys are doing and what they are up to these days since there birthdays are coming up! They are growing up and I am so thankful to have them home with me :)

Owen
nicknames (names we call him more than Owen):
"O" "Ohwee" "Oeon"

Owen is now 23 months old. He is such a happy little boy and really thriving since he was put on TPN. His face is fatter, his arms and legs are bigger, and he seems to be all around just a stronger kid now that he is getting the nutrition he needs. The most exciting event in Owen's life right now is . . . WALKING! That's right, he is starting to really walk! He took his first steps on Monday July, 25th 2011. He was just walking around the ottoman when Grandma got home from work. He was so excited to see her! She was in the kitchen talking to me. He just couldn't wait anymore - just started walking! He only took 6 steps before he fell but we were soooo proud of him! I am so excited he is taking interest in walking. Before he was admitted last time, he was not interrested at all. However, I think Isaiah walking had something to do with it. He seems to work harder to do something if Isaiah is doing it too. I think Isaiah being around him has helped his development in so many ways.

Owen is also learning sign language! He hasn't said much and we were in the hospital so long, he hasn't had much time with his infant teacher. So, we decided to help him by teaching him sign language. He loves signing! He can only say 3 things in sign language - I'm trying to go slow so he doesn't get confused. He now knows how to say more, all done, and please. I love it when he signs! He often will point at something he wants and then sign more. We just introduced please and it confused him a little bit at first. He tries to say more please but ends up just hitting his chest lol. He's working on it and getting better every day. You can tell he is proud of himself with the big grin he gets on his face when we give him what he asked for. I am hoping this will help him as he learns to talk. However, I am worried it might delay his talking because he already knows how to get what he wants. Owen also has learned how to blow kisses and give hugs. It is sooo cute! He always blows kisses and waves goodbye when somebody leaves the house.

Owen is a pretty good big brother and loves having Isaiah around. I think Isaiah is already bugging Owen lol. In the car, I often find Isaiah screaming because Owen is pinching his arm. Owen is smarter than Isaiah and is more aware of what is his. Isaiah is not as aware of property but he is stronger and faster than Owen. You can see that this combination makes for some pretty crazy fights. Unless Owen really wants something, he will hand whatever he has to Isaiah before Isaiah even tries to take it from him lol. I think it is his defense mechanism - avoiding the fight at all costs lol. But, if Owen really wants what he has, he will fight. Isaiah pretty much always wins but soon is on to something else and Owen gets what he wanted back.  

All in all  - they are pretty good kids.

 Owen's new favorite smile - it looks like he is growling at me lol

awwww so sweet

Owen being weird lol - he is on the ottoman - this is what he does when you tell him to fall

haha

Mommy and Owen!

Isaiah

nicknames (names we call him more than Isaiah):
"Zeah" "Zay" Zay Zay"
Isaiah is getting bigger every day. I can't believe he is going to be 1 at the end of the month! crazy :) His favorite thing to do at the moment is scream. He loves to stand in the middle of the room and just scream. His a big walker and is starting to get pretty fast lool. He really is such a happy baby. His favorite foods right now are strawberries and blueberries - this doesn't make for a pretty diaper but he just loves them so much. He likes to play with Owen. If Owen is taking a nap, Isaiah doesn't really know what to do with himself.
Owen and Isaiah

Isaiah is, what we call, a drunken indian. He runs into everything! He just walks and runs into walls, people, objects all the time. He trips over his own feet and gets off balance all the time. He also does not look at what is in his way. He just walks. If you are in the path, you will get run over or you will trip him, make him fall, and hear him cry. I am hoping, as he gets older, that he will get more calm and not be all over the place (but I have a feeling that won't happen lol).
Isaiah is also starting to babble like crazy. He talks all the time! - especially in the car. Isaiah and Owen often talk and talk and talk in the car. He also laughs at everything. He has the cutest laugh but his fake laugh is really ugly. It sounds like he is choking. His smile is much like his laugh. When he is really smiling - it is the cutest smile!!! But, he also has a 'fake' smile which is much like Owen's smile above (looks like he is growling).
Isaiah is attached to two things. 1. His bottle - he loves his bottle. I know that I am supposed to start weaning him and I am very nervous - he carries it everywhere! He sucks on it all the time - even when there's nothing in it. I can't get him to stop. If anyone has any ideas on a good sippie cup for bottle loves I would appreciate the advice hint hint ;) 2. His blanket - really any fuzzy blanket. We have a box full of baby blankets and I have to go around the house and pick up all the blankets at the end of the day. He drags him around everywhere! It's pretty cute but I wish he would like those little ones with the stuffend animals attached because they are much smaller.

This is what he looks like most of the time - mouth wide open lol

Pretty smile

Mommy and Isaiah

Our Boys

I love Owen's face in this one. He was mad because Isaiah took the sunglasses

Owen thinks Isaiah is funny - I'm not sure what Isaiah is thinking hehe

Awwww - what cuties!

 The boys and I on my birthday

 I just had to post a picture of Heath and I. Having two crazy babies hasn't changed us a bit. We still love each other and LOVE being weirdos! This picture pretty much sums up our daily life.

Love you Heath