Thursday, April 26, 2012

Two Years Home

Owen came home from the NICU April 23rd, 2010. It has been two years since that part of the journey was over, wow! I have to admit that the day came and went and I didn't dwell on the day. I didn't spend the day in remembrance, I didn't look back or really think about it at all. I feel a little guilty. It was such a HUGE day in our lives and I actually forgot about it. I feel like I forgot to celebrate his birthday or something. (in case you didn't know - I am a huge birthday person. Especially when it comes to Owen because that day was a unbelievable day. A little boy came out crying, only to show us the start of many miracles to come.)
I see, in my life, the NICU drifting away. When I think of the hospital, I no longer think of iscolettes, gowning up, wearing masks, and touching a tiny baby. I now think of Owen's recent hospital stays - keeping a toddler occupied 24hours a day while sitting in a hospital crib, keeping nurses on their toes, skipping meals because Owen is NPO and won't let me eat in front of him, skipping showers because Owen woke up early, holding a little boy down as they poke him for the millionth time, ect. In a way, I am a little sad. Although I would never want to go back to the NICU and I would NEVER want to relive those days, I find myself missing the support. I had a ton of support from the parents that were right there with their little babies. I had support from Owen's primary nurses. I even had support from the neonatologists. I was there - all. the. time. I lived in Oakland. I lived IN the NICU. The nurses sometimes had to force me to go eat or sleep - even after 6 or 7 months. I was there. I got used to the enviornment. The transition to home was hard for me. My husband didn't understand the 24/7 NICU experience. My family didn't understand the 24/7 NICU experience. Over the past two years, I have learned a new life, a life where I am the boss. A life where Owen's health and Owen's care is in my hands. I have support but not the round-the-clock care support I had in the NICU. The NICU is a different world. It affects us all. I see it affecting my thoughts so often. However, I also see it being less emotional for me as the time goes on. As the years pass, I am sure it will get easier and easier.

A Little Update
Owen's health has been back and forth lately. The surgery I thought we had taken off the table, has come up again and is always on my mind. I want to have those nurses next to me at 2am to discuss this surgery but I don't. I have people in my life that have opinions about it but I feel like they made those opinions a year ago - when Owen was put on TPN instead of having surgery. I think that was the right choice - TPN instead of surgery. Owen was clearly not strong enough to withstand surgery without the extra nutrition support. However, he is a very different kid then he was last year. I can't help but think that the surgery might, I repeat, MIGHT be a possibility at this point. It was brought up in our last GI appointment because the summer is coming and illnesses will be less of a risk factor after surgery. I am praying but I just don't know what the right decision is. This will be in our thoughts and prayers until there is a peaceful decision.

Monday, April 23, 2012

Memory Monday - Meeting Auntie

The NICU has a strick policy about visitors (which I actually appreciated). In the first month Owen was at Oakland Children's Hospital they allowed any visitors to come into the NICU but only 2 at the bedside at a time. I ended up spending too much time in the waiting room. Not that I didn't want others to visit my son, however, I didn't want it to cost me my time with him. At that time he was still very small and we didn't know if he would make it through.
After Owen's first month there, because of the swine flu, they cut down the visitor policy to 3. Only 3 people could be on the visitor list. No switching names once you decide who comes in. So, Heath and I decided it would be the 2 of us, obviously, and my mom. My mom made the most sense. Heath's parents lived in LA which was much too far for them to travel all the time. We knew that we would probably need my mom the most since she was the nurse and would be able to come almost every weekend (which she did for 8 months).
To get to the point, other family members were not allowed in. Nobody would be able to meet Owen until he was out of the NICU. Well, my sister visited home while she was on Christmas break from school and so badly wanted to meet Owen. By that time he had been in the hospital for 4 months. She was not allowed in the NICU. However, she did get to see him through the door window. I went in and held him up for him to see her :)
They ended up scheduling Owen's re-connection surgery while she was home. We knew that he would have to be wheeled out of the NICU and into the OR. So, my sister sat in the hallway, waiting for him to go to surgery. When they wheeled him by they stopped so she could kiss him! It was soo special, a wonderful moment :)

Monday, April 16, 2012

Memory Monday - Blistfully Unaware

We had a 3-D ultrasound done 8 days before Owen was born. This ultrasound happened completely by chance. For my birthday my Dad had given me a gift certificate to go and get one. However, I wanted to wait until Owen was more developed. Heath and I looked at all the stages of development and the recommendations and we decided we wanted to wait to see our little guy until 32weeks. However, one day my mom called and told us that she had a friend in the OB department that had a time slot open if we left the house right then we could get an ultrasoun - so we did it! Side note: for those of you that don't know, my mom is a nurse and works at a hospital that is about an hour away from us. Looking back, I am so glad that we decided to go. These pictures are so amazing - they look just like he looked when he was born - technology is amazing.

This picture was taken 6 days before Owen was born. I was starting to look pregnant at this point and we were getting excited. We were at a friends wedding and we were so happy to see some of our friends from college. We had no idea what was in store for us . . .

Friday, April 13, 2012

THE Question

There is a question I hear pretty much daily lately. I try really hard not to let it bug me. I know it shouldn't bug me. But, it just reminds me of Owen's daily struggle.

THE Question: "Awww, twins?"

I see someone walking towards me as I unload Owen and Isaiah from the car, push them in the stroller down the street, play with them in the park, walk into a resturant, etc. They have that look on their face. That look that says, "awwww twins! How cute, what a handful." I cringe as I know what will be coming out of their mouth when they get close enough.

Many things go through my mind when I know this question is approaching. What will I say?

1. I could say, "Yes." nodd my head and move on with my day. This is something I do on a particularly stressful day, a day I don't want to deal with the rest of this scenario.

2. Try to avoid the question by looking away, quickly changing direction, acting like I'm in a hurry, etc. These things are never sure to work but sometimes I get away with it.

3. I could say, "No." However, I have been down this road. This road is questionable. It could be followed by three things:

a. "Really? But they are the same size." When this response occurs I will say something like, "I know." or, "They are a year apart, he was a preemie so he is a little small for his age." I don't always like getting into all the explanations in public. If we are at the park or something I don't mind. But in the middle of the grocery store after a day of errand running with two kids and a feeding pump screaming at me all day - no thank you!

b. "Are you sure? They look exactly like twins." This response makes me want to smack them upside the head. Are you kidding me? Like I don't know how old my kids are!?!? haha

c. "Oh, ok." This is my favorite response! No judgement, just knowledge and understanding. Thanks to all who have used this response . . . it makes my day a little better.

This might seem petty to you. The truth is, it probably is. However, it goes deeper for me. This isn't about people thinking my boys are twins. It doesn't bother me that they are the same size - it cuts down on storage since they are in the same size clothing LOL.

THE question gets to me because it reminds me of all the reasons Owen is the same size as his little brother. This question reminds me of all the struggles Owen has ahead of him, the daily battle he fights. It reminds me that soon people will be guessing that Isaiah is the bigger brother (which is already starting).

Owen has been through and overcome so much in his short life. It breaks my heart that this is his battle, I can't fight it for him. It breaks my heart that he has such a long road ahead.

I am so thankful our little miracle is with us. He makes great strides every day. He continues to struggle with handling his g-tube feeds and gaining weight, but he thrives in so many areas. He is catching up so quickly. Each day home from the hospital he grows and his body is strengthened by all of his activity. We have every hope that he will someday be off TPN and only on bolls feeds through his GT. I pray the days of no TPN and bollis GT feeds comes soon and with minimal "roller coaster*" activity with Owen's health.

*roller coaster activity: many hospiitalizations, line infections, etc.

Thursday, April 12, 2012

Daddy Time

My Husband works extremely hard. He has two part-time jobs which works out to be a full time job+. He usually works 50-70 hours a week.There are weeks he works M-F 6am - 11pm (with no overtime pay because its split between two different jobs). Then he still works saturday and sunday from noon - ?? whenever he's done with his job (usually between 8 and 11).He rarely has a day off. between Christmas and the middle of March,he didn't have one day off while Owen was out of the hospital. Last week was a nice week because he had two days off! We took advantage of it by going to the park and lots of time playing in the back yard. I wanted to share a few picture of the boys with their daddy :)

Tuesday, April 10, 2012

Our Easter


We colored eggs the night before Easter :)

 We wrote both of the boys' names on an egg but didn't know where those eggs were when we were all done decorating with the crayon so we were surprised by what color they turned out to be  . . . haha

 The baskets were layed out and ready to go when they woke up!
Owen's basket is on the left and Isaiah's basket is on the right

What's inside the basket?

We dressed the boys in their suits and went to Church
They were sooo adorable in their suits!

We had to drop Heath off at work after Church :(
When we got home we took off their vests and ate lunch. They had some fun playing together

And then it was time for some egg hunting! Isaiah was so interrested in it this year! Isaiah was too but he didn't want the plastic eggs, only the real ones :)

"Where's the egg?!"

They are growing up soooo fast!

Monday, April 9, 2012

Memory Monday - First Kangaroo Care

Kangaroo care is where a mother or father holds their baby to their bare chest.
My first time with Owen was Sept 6th. I was all alone with Owen and the nurse asked me if I wanted to hold him. It was both terrifying and wonderful. He was so small and fragile, I was scared to move.

One of the best moments of my life

Saturday, April 7, 2012

A Wonderful Package!

Today I received a wonderful package in the mail! It's funny because I usually know when I am getting a package in the mail but this one was a complete surprise. I buy online a lot so I get packages on my front door all the time. When I got this one, I didn't even see who it was from because I am so used  to bringing them in the house and just opening them up.

Can you guess what it was?

It was a little boy handmade jacket!!

Here's a pic:

Aren't the little buttons ADORABLE?!?!

This jacket is so precious to me for a few reasons. The woman that made this jacket is the mother of one of Owen's NICU primary nurses, Janie :)! How sweet is that?! Janie's mother knows so much about Owen that she thought she would make him a beautiful handmade jacket! It touches my heart to know that even Janie's family is in love with Owen.

Janie is very close to my heart. I think of her as another mother, another friend. She is part of our family. She loves us like family as much as we love her. I text her often, mostly when we are down in Oakland for a doc visit or a hospitalization. She will always be part of the family and I can't wait until my kids grow older and begin to call her Auntie Janie :)

I love you Janie! Thank you so much for loving my little man so much!

Owen loves his one-of-a-kind Jacket!