The other adventure begins

Hi all,

This is the adventure that more of you can relate to! It's about time, right? I have a few minutes of computer time, so I am between feeding/pumping/changing/cleaning/throwing away food from July? Gross/cleaning toilets (how do they get so dirty without anyone using them?), and yada yada yada..

If you were wondering, when we called in yesterday morning to the hospital, they told us O hadn't gained any weight...We were more than bummed. He really needs to gain weight to help his shunt work the best it can. Also, he is behind in weight, although he started big. That was the only key factor that was keeping us hospitalized. Chris and I were getting pretty frustrated with this being the final kicker. I know appropriate interventions for an underweight kid, and we both have proven to be successful at the ng feeds. And we were hearing "He's going to do so much better at home" and "We aren't doing anything that you can't do at home" multiple times a day. So we were thinking..duh..send us home and let us give it a go!

As we were thinking this the social worker came up to us and asked us how we were doing. I started to cry (a third hormones, a third exhaustion, and a third impatient) and told her our shared bathroom person at Ronald's was up again twice last night blowing his nose and making other gross booger noises. He also took two long showers which were really loud. So, Chris and I both didn't get much sleep. Of course the snot dude and I couldn't coordinate his rockets with my pumping date.... The social worker did her job well and listened to us and was our advocate. We also discussed our frustrations and competency.

She took our appeal to the discharge rounds and next thing you know the cardiologist was there to do a stat echo, and then a 12 lead ekg, and then he got his sutures cut out, steri-strips removed from his sternal incision, (which looks beautiful!) and we were so overwhelmed with the thought of actually going home. Chris left to go to Ron's and I stayed and held O (who has been improving with his nippling each day, he takes between 45-60ml now every time, and quick too. He also kept down all but one spit up since 2 days ago!)

Anyway, long story long, we made it home and it was amazing to walk into your home and smell those smells...I dunno...house smells... and we set up O in a little box thingie between us and we went to bed. We did not sleep much. Every move he would make every sound he would make we were looking at him. I pumped when he finished with the bottle then Chris would finish the rest of Owen's feedings on the pump that we have from the hospital.

We did well through the night and he has been on a good routine for the most part of the day. We are having to adjust to everything. We did not know where half the stuff we needed was and were just exhausted but excited at the same time. The rent to own program just matured. We have him with us and we are responsible for everything. Crazy!

It is so wonderful to be at home with him. This is the first time that we can just walk around with him and not have anything attached to him. Sleeping with him is great. Last night was the first time that we have ever been with him through the night. Things are crazy but they will settle out with time. We will keep you all posted.

-Chelsea

HOME!

Hi All,

A late post because...well....we are HOME!! I'm writing this at 9:57 and I think we rolled in the driveway about 930. There is so much to do and 6 weeks of stuff to unpack! We finished feeding O in the car on the way here and gave him his meds, and he is trying out his swing right now. He gives it an A+. Thank you so much and love to all who have helped us. Pics and more to come. We will continue to blog. Stay tuned!!

Love, Chels

One more day!

One more day! We seem to be getting that a lot lately. "you will probably be going tomorrow". We have heard that the past three days but I have a feeling that tomorrow is the day. We had Owen sit in his car seat today because he has to prior to going home. He passed with flying colors. That will save us about 2 hours tomorrow. Tonight's blog is short. The only reason that we did not leave today is that they want Owen to gain some more weight. He gained last night but not very much. they want to see more of a gain tomorrow and pray that we will and we will be on our way home. I just read this and I am sure some of you have already seen this somewhere but it describes things perfectly.

-Chris

"Welcome to Holland"
Written by Emily Kingsley

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

An important day

1999

Hello all~

I'm giving Chris the day off of blogging. I am starting this late, about 7 and we haven't left the hospital yet. We also need to eat and pick up some fruit for the RN's in the ICU. We are anticipating a discharge tomorrow and wanted to give the RN's something yummy and healthy, so we came up with a fruit basket.

O has had a fantastic day and has increased the amount of momma's milk he can take on his own. His breathing rate is still fast, but improving little by little each day. He is up to between 30-50ml by bottle and his goal is 75. He's doing so good, but he gets tired and falls asleep which never happened during meals pre-op. He had one spit up but hey he's a baby, we'll give him that. Daddy is comforting

O right now because poor baby has the hiccups. He had them in utero twice a day especially towards the end. But after a decent spit up, and oh yeah, open heart surgery, hiccups kinda hurt. So he would have a little squeal after each one of pain. Dad has the mobile on and and O is getting the classic forehead rub and back massage. He is resting comfortably now and the hiccups are gone.

Today is an important day for many reasons. 11 years ago today Chris and I went on our first "date". It was a double date to Mels and I paid because Chris didn't have any money (we were 16 years old, give him a break!) It was a day that we celebrated for 5 years until he asked me if I would like to marry him. And that was 6+years ago! Our lives are better than we could have imagined together-going through college, getting married, travelling around, starting our family at home, and falling in love with Owen. We are so different in so many ways than 11 years ago, but also so much the same. It is funny to think about how much has changed but so refreshing to see that our love for each other has continued to grow and evolve just as we do.

On our way to Ronalds from the parking garage a woman pulled over and asked Chris directions on how to get to 101S. He gave them directions. This wouldn't seem so crazy but over the years every time Chris and I have come to SF we have gotten lost. And now we know our way (or think we do at least.)

A little update at Ron's- no bueno sleep last night. Our neighbor/shared bathroom dude had some interesting nose issues at 1 and 5am, and kept Chris and I up running the shower. After 130 our bed decided to give way one last time. We decided to not put it back together, and just remove the boxspring itself and slept on the mattress on the floor. It was solid so we didn't care. Plus, I am still pumping twice through the night so it was not very restful. It sounds weird to say but we are actually looking forward to being tired from Owen keeping us going at night. It is something that new parents have a hard time with adjusting and all (and I know we will too!!) but it will mean that we are HOME and we can START what we have been craving for so long to do...hug on him and cuddle him and love him and snuggle and give him what he needs when he needs it in the comfort of our home.

I can just picture him in our arms on our deck, staring up at the trees! I can just picture Blue running up to him and licking his feet. I can just picture him sleeping in bed with us although we swore we wouldn't let him. I can just picture myself wrapping him up around me and carrying him around like I have been craving to do for so long. I cannot wait for these pictures to turn into reality.

But I know that we wont be home until we are bouncing down our driveway, and I am patient. I have learned that through this process patience is key. Also, fear is harder to manage than stress. I think that when we get back to our lives- I mean start our new lives with Owen- we will strive to not sweat the small stuff. We all know how precious life is, but so many of us (us included!) focus on silly things that really don't matter. So in this waiting game we are now patient. And in this stressful time we are calm. And are we afraid of this rent-to own agreement coming to a close? You bet! But our excitement wins tenfold!

Milk, It does a body good.

Another day down. Hopefully there are not too many for that we have to count down. Owen is doing better with each meal and has not been having any projectile vomit like he has had in the past couple of days which is good. We have began to fortify his breast milk with more calories to get him to grow. It's not that he is very far behind in his growth, but that he has higher needs due to surgery and also his heart anatomy. As he grows he will grow into the shunt that they gave him. This will help slow his respiratory rate down a little bit as well and he won't have as much fluid on his lungs as he grows. He has been doing great--better than they want actually with his o2 saturation's but as he grows this will come down as well.

We asked the surgical NP about elevation difference. We live at about 1200 feet right now but they don't think that will bother him too much. (because of less oxygen at higher elevations) So no trips to Tahoe or anything like that for Owen at this time. Owen has still been gaining weight almost 9 lbs today. Crazy that he didn't lose any with surgery and everything else that was going on. They said that it is hard to keep him here because they are not doing very much for him at this time. They are only really watching his respiratory rate and don't want to send him home too early and we end up back in the hospital. They will do another chest x-ray in the morning an re-eval after that.

Chelsea and I went out to dinner last night had some good Mediterranean food. We haven't been leaving the hospital until between 8-9, so it was a light and perfect late night meal for us to have. The fog and wind are back which is nice because the hospital is no longer 85 degrees in the rooms. We have met a lot of great people during our time here and wish for the best for them. There are some other cardiac kids here that are very sick and a couple we know had a very hard day the other day with their little one. We try are best to give them all the support that we can from our experience.

These kids are amazing and bounce back a lot better than adults. I pray and hope for the best for all the other kids and their families here. Our time here is soon to be over (for now) but I wanted to say thank you all for the continued support of Owen and his quest. By the way, we also made a compliant to Ronald's people about the bed and they said they will be getting a new box spring and frame. The 6th time was 1 too many.
-Chris

Better day!

The happy face. This is the only picture that we have of him since birth with nothing on his face. This is right before mom placed the new NG tube in him.

"I am so mad."

So this is the 3rd time that I am writing this. Blogger has been giving me a hard time and not saving. So when I set the computer down and it turns off the wi-fi here will kick you out and everything is lost. Owen has had a better day. You can sense that he is getting stronger his cry is beginning to get a lot stronger now as well. He has had a sore throat and it's been difficult to cry after being intubated 2 times. He has tolerated his feedings better today with only 1 episode of spit up. He took more from a bottle with the last feeding than he has in a few days. We are back to holding him a lot as well which is good for all of us. Chelsea had a good learning day today. Since Owen will be going home more than likely with the feeding tube in his nose we must know how to replace it if Owen pulls it out. There was no practicing on dummies for Chelsea. She was a trooper like usual and we pulled out his old tube and Chelsea put in the new one including checking placement and taping it down to little mans face by herself. I do this often at work so not too big of a deal for me to do.

We were moved to the step down unit last night but would be better called a step down closet. We share this closet with 3 other pts and their families The other families are very nice. One of them saw us sitting at the shuttle stop last night and gave us a ride back to Ron's. It was nice that they went 20 mins out of their way when it was late and they still needed to drive back to Fairfield. If there is one thing that I have learned in this whole thing is that people can be so giving, thoughtful, helpful, nice, loving, compassionate. We are so fortunate for what we have and learn from peoples generosity everyday

Better day!