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!

Step Down

Sorry for a late blog tonight. We are out of the ICU. Owen has been taken out of the ICU and into a step down unit next door. This is a good thing. Another small victory. We all had a rough day. Owen has not been tolerating his feeds as well today, he is not drinking very much and had vomit with every feeding today. This has been rough for Chelsea and I to watch because he was such a strong eater before surgery. We fix one thing and now there is a new problem . There are a lot of factors playing into why he does not want to eat and with time we will fix them but it is still hard and very frustrating for all of us. The "moose" is eating like a mouse. He is trying and you can see how frustrated he gets. I have discovered what ever he does is cute including vomit. Yes, I would still eat him. On the positive side of things, He has no IV's, No longer requires oxygen, just the feeding tube. This is the first time that we have seen him without any O2 on his face. Once he begins to tolerate food better and we work on some resp things he has going on, we can come home. Just a few more things to fix. Hope all is well.
-Chris

Body Bling!

Owen is awesome. We are getting rid of things every day. Today all chest tubes were removed along with all the pacer wires. He looks so much more comfortable with all of that out of him. He had his Arterial line removed from his Right radial artery. He is now just down to his oxygen that they want to take off him as soon as possible. Maybe by the end of the day today. He then just has a Picc line that will be removed tomorrow and 1 IV that will be removed when he goes home. He is still working on eating and we are working on normal size meals. He only will drink about 1 oz and gets tired so we are still working it. It will get better with time. He receives the rest of his meal via a tube the goes down his nose to his stomach. We have gotten a lot more holding time today and we are so happy that now with the chest tubes out he is so much more comfortable and easier to console. He respiratory rate has slowed with the chest tubes out. It has been nice to see progress with him. It seems that he is a little better everyday. He is going to get another blood transfusion today. They like to have the blood levels a little higher in cardiac kids. We will see tomorrow they are going to try to switch all of his meds to the oral route.


We are doing good. We left a little early last night so we could make a run to Trader Joe's and get some food so we don't have to eat out as much and had to buy season 3 of entourage. I think we are losing sleep because we are addicted to this show. It has been a beautiful day down here yesterday and today. I have been laughing at people because they are all talking like they are having a heat stroke and we are in the middle of the Sahara. Some here think that it is Hell on earth with a scorching 85 degrees.

We are just crossing our fingers and hoping that we don't get any curve balls. This time next week we could be home. We have been talking about how home is going to be weird. I won't know what to do. We are going to have to adjust to having a newborn at home. Even though he is almost a month and a half old this will be the first time when will be taking care of him for 24 hrs a day. Today we have been in SF for 1 month. Time flies when you are having so much fun! Owen is strong and has gone through more in his short life so far than most will go through in their entire life. He has already touched so many people from the stories I have heard. It is amazing that this little 8 lb life has changed so much. I am seeing the world through new eyes.
-Chris

Grumpasaurus

I don't think you can blame him for being a little grumpy these days. I think the we are trying to get him back to a routine. He is back to bottle feeding again today. He is doing okay with it so far. I think he needs to relearn again. He is drinking about 1 oz every 2-3 hrs so we will see how things progress. He chest tubes have had minimal output in them so the plan is to be removed tomorrow. That is huge because they look so uncomfortable. The "H" bomb was dropped today by the surgeon's nurse practitioner. If you are wondering what the "H" bomb is, it's HOME. What Owen needs is a little more time. Chest tubes need to come, get off o2 and better eating status. She said Wednesday-ish of next week. Chelsea and I are very realistic and know things can change quickly with him but we will keep our fingers crossed and pray for this. How great would that be?

The sun has been shining down here today. It has been the warmest day we have had here. It has been in the 70s with no fog or wind. It is great! Chelsea and I stayed late last night and we were on our way back to Ron's when we pulled up to drop Chelsea off before I parked the car. I went to give Chelsea the keys to get into the house when the keys were not in my pocket. I frantically started to look for them but they were nowhere to be found. I then started to backtrack in my head of where they could have fallen out. The only thing that I could think of is when I was getting my keys out to get in the car back at the hospital. The problem is that we can't even get in the front door to make it to our room. So we drive back to the hospital and began looking for the keys on the street with a flash light. No luck with that. We had to make the call to the on call staff member at Ronald's. They met us back at the house and let us into the house and then our room. I still had to go park the car at the kaiser facility 3 blocks away. On my drive it hit me I took my keys out this morning at the parking garage. When arriving I looked in my normal parking spot-- no keys. I figured I would ask security if they had a lost and found and what do you know, our keys were there. It was now about 1030 I had not eaten dinner, I walked into our room to see the bed, broken and staring at me. I kept my cool, put the thing back together again, ate something then went to bed. So much for a relaxing night. Hopefully tonight will be a little more smooth.
-Chris

Day 37 Home is where the heart is.

I have to tweak that a little bit. Home is where the reconstructed heart is. I had a friend tell me that today after yesterdays post on home. I have always heard that but t has never really meant as much as it does now. I would love to be at home with the family but but it really does not matter as long as I am with the 2 of them. Owen has had another good day. He continues to be fussy but I think it is that the poor little guy wants to eat. He had some Tylenol today by mouth and he thought it was the best thing ever. They are continuing to advance his feeds. He is up to 5 mls of breast milk every hour now. They said that they would advance more tonight. It as a big day for Chelsea and I because we were able to hold Owen again for the first time in 2 weeks. It is hard to to decide what is bothering him, Is he hungry? in pain? Might be a combo of the both of them. We just want to see him get to eat more. Feeds have been slow to increase because of potential for re-intubation, possible chyle-leak, and fluid status. We think he will be just fine eating by mouth! His respiratory rate is still fast so we all have been trying different things. We found that increasing his oxygen did nothing to help slow him down but controlling his pain and helping him relax is doing better at calming him. I have wondered and talked with the nurses if he might be going through withdrawls from narcotics. He was on a narcotic drip for over 2 weeks. He does not have all of the symptoms of withdrawl. We will have to wait and see. Owen had a good amount of visitors over the last 2 days. He was able to see Papa Rich and friend Matt. Then Carolyn and her mom Debbie came by today as well and were able to meet little Owen for the first time. Cuzz Eric came over last night and met him for the first time as well. It has been great to see all the wonderful friends comes over to see us and him.


Chelsea and I had a good night last night. We went out and had some pizza and beer which always good comfort food. I love how there are so many dog people down here and how dog friendly of a city this is. For example, I met Ike last night. Ike is a very calm black Great Dane. My dream dog for everyone who does not know. Chelsea initially said that I could have one after Owen is 6 months old. That was the deal before Owen was born. We might have to adjust that depending on how Owen does but it put a big smile on my face to meet Ike. It was great that the owner was very friendly and was talking great danes up to Chelsea. Chelsea seems to think that they are too big, but they just want love.

We then finished the night off (last night) with finishing the season 2 of Entourage. Nothing much else going on. To answer Helen's question on the last blog we will have a welcome home party for Owen sometime after getting back. I think that will be wonderful to see everyone. Owen can't wait to meet his fans, and of course we will have hand sanitizer to go around! :) Hope all is well with everyone and thank you all for the support.
-Chris

P.S. The bed broke again last night but we were to tired to fix it in the middle of the night so we woke up with a back ache and in an odd position.

Where is Home?

I'm Okay

Owen had a good night and good morning from what I heard. He had his catheter removed this morning so now he is back to the diaper changes freq since he is on Lasix. He had a large bowel movement this morning which is a good sign of things to come. They have stated his trickle feeds again so hopefully we can advance them as quick as possible. His saturation's are low to mid 80's which is what they want him to be. There has been talk about wanting to remove his chest tubes. One is still putting out a decent amount of fluid so hopefully that slows even more. He has been fussy on and off but he can't eat and he is in pain on and off. They have been watching his respiratory rate because it has been fast and adjusting his oxygen. I think it has to do with his pain response and being hungry. He will calm down with us but it takes awhile so he gets Morphine and Ativan around the clock. He just needs milk but I understand why we have to wait. Many people have asked me when will you guys be able to come home? The answer is I don't know. They have not talked about it too much to us yet. I would think if things progress well we will be home maybe in 2 weeks but that is just my guess at things.

I was the lucky one that was able to go home yesterday and Chelsea stayed with little O and friend Jac stayed with her. I was able to escape the cold but felt like I was visiting and it almost does not feel like home. I felt I was visiting our house like it was a vacation home. It was still good to be there but felt lost without Chelsea and O. I managed to get to the garden and pick some things for Chelsea and I to have at Ronald's. I was very excited to check on the chickens and found 2 eggs. Our first eggs, it was a pleasant surprise. They are probably fertilized by our rooster "Pat" who was supposed to be a Hen but you can still eat them and no there is no chick inside. I was able to run some errands for Chelsea today on the way back. I had to do what would be uncomfortable for the most "metro" of men. I went to the Bra section and found the nursing bras and shirts after looking for awhile. That was one thing I was not going to ask for help to find and when I found them I got out of the section as faster than you could say "panty hose". I then went to Ulta to get Chelsea a belated B-day present. It was like estrogen city and I was in and out as fast as possible. The man card was in check for sure today with those trips. I made it back to my wonderful fog filled "home" away from home with my little family. I would not want to be any where else with out them.

-Chris

Adios breathing tube!

Hello all!

This is Chelsea here with some great news! Owen got his breathing tube out early this morning at 63oam. He is also off all of his drips and got another big line out (non medical definition here: the line that went straight to his hear). He is on a nasal cannula, so we are still playing that game. He did very well and is a happy camper right now. He has been such a trooper today, just on morphine and tylenol for pain and a little bit of ativan here and there. Poor dude he is hungry but is coping well. I can't imagine what that has to feel like to be hungry and not have food and not be able to tell people you are hungry.

Chris and I rushed into the hospital to see our little man and his chin and lips:) they had been MIA for 12 days. They are cuter than ever, we missed them a lot, and hopefully will get some breast milk soon. The TPN is running, they are just being cautious since the eventful first attempt at extubation. He is off of all drips so that makes it easier to get more nutritive fluids in that volume.

Chris needed to make a quick trip home to pick up mail, so Auntie Jac came down to hang. When she got here, O was wide awake and stayed wide awake for 2 hours! We had fun staring at him and hopefully he had fun staring right back! He was sooo happy. It may have been the perfect cocktail of ativan and morphine, but Aunt Jac thinks it was her presence. Let's go with the latter:).

After he fell asleep we went for a late lunch to Pho (pronounced "Fuh", I am told, not "Fow"), and then walked back up to the hospital to chill with Baby O. We turned on his vibrating egg soother, put the paci in, gave him a foot and a head massage and he was golden!

We will hang out with O until late and then head back to Ron's. It has been a great day and I am sorry for no pics, I don't have the transfer cord on me. I wonder if I have to come up with another deep thought for Chris's question of the day...

A good friend texted me last night about Braille on drive thru ATM's, what's up with that?
My dad has wondered how do you plant seedless watermelons? If they don't have seeds then how do you make more? Ok that is enough for today. Miss you all, hope you are well, thank you for following us, and we can't wait to get back to our non-hospital lives and catch up with you and your lives!

xoxoxo Chelsea xoxoxoxo

One more day!

Hello all- They decided to wait one more day until removing Owen's breathing tube. They wanted to allow him more time to get a little more fluid off his body and lungs. The trunk of his body has been the most swollen and looks much better today. Tomorrow morning they will remove the breathing tube. They have stopped a lot of Owen's drips today. He is no longer on Epi, dopamine, fentanyl. He has been awake and calm for most of the day. Chelsea and I are able to calm him pretty well with the help of a vibrating egg and his mobile. He really knows who Chelsea and I are. He will just stare at us with his blueberry colored eyes and let's us know it's all okay. Owen still gets morphine to help with his pain control and ativan if he is really mad. His vent settings have been turned down to room air and he tolerates it well in the mid 80's which is good for him. They want him to be about 75-85%. When tomorrow goes as planned that will hopefully start the process removing all other tubes and wires from him over the next week. Labs still looking good for the little guy. Everything else is also looking good for him for him as well.
Chelsea and I were able to go out and have a dinner just the two of us and was nice to get away. The place we went to was a little loud but fine by us. We are use to the sound of a heart monitor that beeps non stop everyday abut 160 times a minute and there is always the other alarms that Owen loves to set off 1 way or another. We are excited for tomorrow to get here and see O with all the stuff off his face. We have been in the cardiac ICU so long that all the nurses know us by name which is good and bad.We are also getting on a first name basis with other parents. Chelsea was able to see one of the other parents getting ready to go home with her little girl today so that is great to see. They chatted quite a bit over the last weeks or so. We know our day is coming so we try not to let being here get us down. We know that so many other kids and families have it so much worse than we do. I have met to many parents and heard their stories and my heart aches for them and their situation but I also admire their strength and determination for they have been doing this much longer than Chelsea and I and their kids are typically more sick than Owen. As we sit here in in room 6 our home away from home I see other patients coming in after surgery all looking the same with the same equipment and same surgical team in tow. I often think about their parents and how they are doing. For most of them the journey is just beginning and will see the same rough road that we saw and are still seeing. Some are veterans because this might be the 2nd or 3rd open heart surgery. Nonetheless the fear and anticipation is in their eyes. I look forward the to getting back the country away from this concrete and asphalt with very little nature. I long for the the heat of the summer and the perfect temperature nights on our deck. I hope that tomorrow is the day and this tube comes out.
-Chris
Question of the day.
As I was riding in a elevator today I saw a painter. Why do painter's wear white? It seems like the worst color for a painter to wear. And our bus drivers name today was Ray if you were wondering.

Mood rings

This is the little man this morning. He has the breathing tube in place and the feeding tube is the little one coming from the nose. He is also getting a blood transfusion as seen by the blood in the IV tubing. You can see the top of his dressing over his chest incision. We covered up the belly for 2 reasons, 1 is that is where all the chest tubes and other stuff is going on and 2 is that these blankets are made by people and donated for these kids in the cardiac ICU. I posted their link on my FB page and here as well www.lilybellegreen.org. Read her story. It is a good group of people that do good things.

Today's title has to do with Owen's nipples. You can tell how well he is perfusing these days by the color of his nipples. when he is mad the blue/purple and when he is happy they are nice and pink so his nurse yesterday started calling them mood rings. Owen is doing good today. They want him to be more awake and moving around to get the fluids out of him and he has been. You can tell he just wants to scream and cry. They have had to calm him down with meds today a few times. It is hard to try to console a baby when you can't give them what they want. He loves to be swaddled but we can't because of all the lines and tubes, he loves movement but he is a little tied down to the bed, he loves to eat and they have started that to try to stimulate his gut. He gets a whopping 2 mls a hour through a NG tube they placed (about 30 calories/day per Chels). They will cut his feeding off in the morning because it will be time to remove the breathing tube again tomorrow and it will go better this time. They have been tanking him up all day. He was transfused with 2 baby units of blood and is ready to go. He is one tough little guy. His labs all look good, he is almost down to room air on his vent settings. Things are looking good.

I knew this would be a better day when I called this morning to see how he was doing and his nurse said "Owen has been doing great, He has been awake and calm but he keeps giving the WTF face" I started to laugh because I have had that same thought and to hear from his nurse was funny. It's sounds like something that I would say.

We weren't sure what type of day it would be when Chelsea woke up to pump at 530am and our bed collapsed (again). This bed, graciously supplied by Ron, has a plastic bed frame, that fits together in puzzle piece grooves. It fell apart last time late at night before bed, and this time in the am. The mattress basically folds in half when the frame collapses if you can picture that. So Chelsea is sitting in the half that has collapsed and I feel like I am on a weird fair ride laying down. The only good part about having to put our bed back together when you are hours from waking is that I found out (1.5 weeks later) that our bed was a sleep number. Allright!

Chelsea and I look forward to seeing Owen every morning, and we also get very excited to find out what our bus drivers name for the day is going to be. Yesterday we had a man by the name Bong, later Biu, today it was Benito. I also hopped on another bus just to check the driver's name and play dumb and it back off like I was on the wrong bus. His name was Vern. Today Chels and I had a chance to get free chair massages at the hospital. The 10 minutes were great! There is a lady on staff that does this 2 times a week at this location. How cool is that. They also had dogs here today. I felt like a kid myself. Those who know me know that I love dogs and would own 20 if Chelsea would let me. It brought an instant smile to my face. Not much else going on today. Big day tomorrow keep our fingers crossed for a better time.

-Chris

Day 33

Chels took this pic- the heart in the cement by the hospital.

3 weeks today in SF. Another day here Chelsea was able to scrap book in a class today for the 3rd time. They offer it to all parents and help you with it if you need help. We are getting to know other parents here and at Ron's. It is nice to meet them and we share the same stories with each other. We have a tentative plan with another try to extube (pull out the breathing tube) in the next few days. Owen is still going strong but manages to scare us at least 1 time a day. He had another episode of of a slow HR today but not anywhere as near as bad as yesterday. This is a slow process of weaning everything and they want to take their time with him. They say he is still not out of the woods yet which I believe more and more. We are are hanging in there but everyday is tough. Owen has been on a lot of lasix so he is losing a lot of his "puff factor," as put by the surgeon's nurse practicioner. He has a good amount of urine ouput which has made him more in the negative. This means he has more fluid volume going out then coming in. He has been weaned off the epi drip again which is a good thing. We are back on the the right track again. The team here contiues to be great with us and Owen. They are letting him just rest for the time being. They said that they might feed him tomorrow via feeding tube again to start stimulating his gut. He has been on TPN and lipids the past 2 days. Chelsea got to see his incision today when his dressing was changed. It's about 4 inches long, and looks normal. Today has flown by for some reason, and we are getting in a routine. The sun was out for quite a bit today, at least every time I looked out the window. Hope this update finds you all well and that you are also doing good. We write about us and don't always make a point to respond back to comments, but they mean the world to us. Until tomorrow...

-Chris and Chelsea

One step forward two steps back.

I was not going to blog tonight but I felt like I needed to. Today started as a great day. Owen was having IV drips stopped, his right lung that was collapsed was back up. He was more awake and having great urine output, he no longer looked like giant marsh mallew. Chelsea was about to get her birthday wish to have the tube removed from Owen's mouth because he was breathing on his own. As we were sitting there watching Owen get extubated he began to have a decreased HR and was not looking good. HR dropped to the 30's took a couple breaths. They were at the point when they were very nervous and multiple team members started arriving to help because Owen needed acute intervention at that time. Chelsea and I were asked to step out which we did and there was no reason to watch so we went down the hall. Owen was given emergency meds at that time that helped stabilize him. They did not have to perform CPR but were close from what we were told. This was not what we were expecting at all today. He is stable now and his lab work looks better after the event and has had time to recover. That is one thing that I wish to never see again with my own child. Part of you wants to run out of the hospital and not look back. The other part, the stronger part is that you don't want to leave his bedside. We have felt all the emotions that I think you can feel in one day today. Happy, fear, anger, helpless, etc.. Not sure where we will go from here. As soon as he gets back on track they will give him another few days or so and we will try this again. I know that every parent goes through what we are going through when in our same situation but it still sucks. This is a roller coaster that I no longer want to ride. I am ready to get off. I won't however because Owen needs us and we need him. I don't really have anything else to say about today... Hope for a better day tomorrow.

Muscle Milk

Are guns legal in hospitals? If not I don't know what Uncle Dave is going to do with those things.

Day-31. Owen is starting to wake up today. He is still holding strong at this time. He has had the medication that keeps him paralyzed stopped so that is a good thing. This medication called Vec (in its short form because I do not feel like trying to spell it out) causes your mucus membranes to dry up. They have had to put a lot of eye drops in and done a lot of suctioning to the breathing tube and the nose for some very thick adult like boogers (aka lung butter). He continues to do well and he is where they expect him to be for now. As I am typing this he is starting to move around a little more now. He will still be sedated until the breathing tube is removed. If he is on track he can hopefully have this removed in the next 3 days. We have allowed for Owen to be put into research while being here so he will be in some studies to help find causes for congenital heart defects. Chelsea and I are having our blood drawn as well for genetics research in conjunction with Owen's blood. He continues to have his vent settings decreased and changed which is all good. His oxygen saturation's continue to do well. They are continuing to work on the right lung to help with the collapsed part of it. He still has a lot of swelling and they will be giving him some more lasix when they are no longer concerned with his blood pressure.

Owen had some visitors today. Uncle Dave and Aunt Wynter came to visit along with Papa Schlitz. They took us out to a good lunch at a near by restaurant for some great kabob's. We had to off load a lot of breast milk to Wynter and Dave because we are running out of room for stuff. Dave is holding all the breast milk with his pythons blazing in the picture above. We will already have a full car with everything else. The Prius does not have a lot of room to start with let alone now with a car seat waiting for the little man to be put in it. I am so looking forward to the day when we are walking down the hall with him in the carrier to put in the car. I see parents doing it everyday and know that our day is coming soon enough. We miss home and cannot wait to get back there. We had a late night last night. Papa Schlitz invited us over for some taco's. They were great. We are going to head back early today, we have no cleans clothes left so we must do laundry tonight. Hope all is well with everyone and we will keep you posted.

Day 30

(Pic taken earlier this week)

Yes, day 30 of Owen's life. It has been a busy day for Owen and his nurses. There are constant adjustments in his 9 IV drips. Changing his vent settings often. (ventilator-the breathing machine.) On a positive note they have been able to decrease his O2 through his vent to less than 50% which is a first for Owen. Owen is very swollen at this time. Post operative patients will always have swelling and Owen sure does. Poor thing looks like a heated up marshmallow. They said it will get a little worse then start to decrease. Overall he is nowhere near stable it has been minute to minute with him a times.

Medical section- Owen is on drips to keep his blood pressure increased and has been low throughout last night. He is on med that keep him sedated called fentanyl and (VEC) Some will know what vec is. Owen is also on heparin, dopamine, milrinone, epi and others. These are normal medications for post open heart kids, I am told. He was given a blood transfusion as well since he has had so many blood draws with other things have lowered his blood count. Also had some Lasix to get some fluid off his body. Owen has a collapsed right upper lung which they see commonly when pts are on a vec drip. Vec is a muscle paralyzing drug. They are working on correcting this so that Owen does not develop an infection. The respiratory therapist is giving Owen a tapping massage on his chest. They are trying to get stuff moving around better.

Chelsea and I are doing good, There is not much Chelsea and I can do while here except kiss him and hold his swollen hands for awhile. We are doing okay with keeping ourselves busy while we are here from surfing the net, reading, ipod games, facebook, magazines, and of course our frequent loves on Owen. We would get more touches in, but almost every square inch of the front of his body is covered in some sort of medical probe. I am running out of things to keep myself busy. We can only do the same things for so long everyday. It seems that we are making progress with Owen but it is scary all the time while being here. There is something always going on with him right now and it is not fun to watch but we won't leave his side. We have chosen not to post any pictures of Owen now we will wait until he has a little less going on. We don't think anyone wants to see him like this. It is not an easy sight to look at if you are not used to it. He has a breathing tube in, 3 chest tubes, 2 pacer wires all ready to go if needed, a oxygen sensor for his brain, a foley catheter, a sternal incision dressing, a scalp IV, and other IV's in both hands, as well as in his groin, an oxygen sensor on his toe, and then the menagerie of medication lines running from those 4 IV sites. He has the type of bling that we really can't wait for him to get rid of. If he remains on the vent another day, we are hoping he gets another tube-a feeding one. Per Chelsea, aduls usually go 2-3days post-op after heart surgery and we would assume kids are about the same. (as long as they are stable...)

Back on the love for your child-I know that other parents would understand but there is something about the smell of your child. It is like a drug. I would continue to smell him as much as possible it is very intoxicating. Even with all of his medical garb on I would still eat him.Last night was the most exhausting night I think of my life for sure. I have been tired in the past from long hours of child birth-coaching, long working hours etc but never like I felt last night. People had commented on Chelsea and I last night saying that "you 2 look exhausted". Chelsea is still a trooper no matter how tired she is she is still up at night pumping with no difference. Chelsea has decided to push her birthday forward 1 month. Her birthday is on Monday and all she wants is an extubation. She might get one if Owen keeps progressing in the right direction. He continues to do well but we are still on the rocky road to recovery.

-Chris

Chicks dig scars!

We made it through so far. I don't know where to begin. The morning started early, Chelsea and I were up at 0445 and at the hospital about 1 hour later. Owen had a good night we were told and he was awake this morning when we got here. It was nice to see his eyes before this whole thing started. The anesthesia team showed up at about 0730 and it was time to go. Chelsea and I were somehow very calm through the night and this morning with only minor crying episodes. We were able to get to go with him the surgery waiting area and give him a kiss before he had to go. Chelsea and I knew that we could not sit here and wait or we would go crazy but we were both exhausted. We decided after breakfast and hot drinks at starbucks we would take a 15 min power nap in the car (its never hot down here so you can do that). After the attempted nap we were on our way a few blocks down the road to the Golden Gate park. We spent some time in the Academy of science and then it was time for lunch. We had a good lunch and were expecting a phone call soon which we got! He was out of surgery and back to his room. (I guess that he got to his room around 12 but we didn't hear from the team until 1245.)

When arriving back to his room he had a huge entourage of about 15 people. He had great saturation's while in the OR in the 90's but he was having an episode down into the 40's and they were trying to figure out what was going on. They did an immediate Echo to make sure the shunt did not close off and they did not need to rush him back to surgery. The echo was fine and the shunt was working well. They then started him back on nitric oxide which helped a lot. His sats began to rise to much more acceptable level. No one was really talking to us or even looking at us, we were just sitting there trying not to get in the way or freak out too much. It was Drama but thank goodness his sats went back up.

I will go into the medical story now. Owen had a shunt placed like we were told. The shunt connects the aorta to the pulmonary artery to get more blood flow to the lungs. This was done in great fashion. Upon seeing Owen he looked much better than I thought he was going to. Owen has 3 peripheral IV's and and the picc line as well now. He has 3 chest tubes in now that drain fluid from his chest cavity.(these will be removed with time) Owen also came back with pacer wires in his chest. When they do these type of surgeries they the put pacer wires in place just in case Owen's Hr slows to an unacceptable level these wires would allow them tho shock his heart.They had to replace an arterial line that Owen managed to pull out. He continues to be intubated and they plan to keep him very sedated through the weekend. He has about a 3-4 inch incision going down his chest. He had to be put on Bypass during surgery. This machine allows the heart to be stopped while working on it and pumps the bodies blood for it. That's a lot for anyone, let alone a 4 week old!

Owen is doing good at this time. He looks even bigger than normal because he has more fluid and air just like anyone after surgery. His saturation's are in the 90's for now. That is a little higher than they want it to be at this time but it is nice to see for once. He is stable and hopefully continues to be this way. They say that the next 24-48 hrs are very critical and that kids sometime have a dip 12-24 hours after surgery so we are nowhere close to being out of the woods yet. We thank you all for the support leading up to this and are just amazed of our great of family and friends. I will keep you all posted.
-Chris

Done with surgery!

Shunt was placed, Shunt has been working. Owen is stable. He was out of surgery around 1200. He has been up and down a little but hanging in there. The next 24-48 hours are critical. I will have a blog later with a lot of detail but I know you all are waiting to hear something. We still have a bumpy road ahead but I will keep you posted.
Chris

Showtime

Team Britton

Nana and Papa Britton bought Owen his first motorcycle gear. This was a picture from Sunday night.

Owen's big day is tomorrow. He had a busy night from what we heard last night. He somehow lost his IV access which gives him his meds to keep him sedated. He then was very upset when they were trying to keep his airway. He desated a lot from what we were told. They had to take what they could get so poor guy now has another IV in his scalp that should come out soon. They were able to place a Picc line finally this morning so we should not have any further I access problems. I guess when reading back through last night's post I forgot to say what day he is having surgery. It is tomorrow (Friday) first thing in the morning, but as we all know things can change and he can be pushed out. He has started to have more desaturation's so they don't want to push him out too long. He is with one of his favorite nurse's today so that is good. They say that the procedure will take a good part of the day. Chelsea and I will be leaving at that time. We will probably go on a walk through the academy of science which is right by here and take a look at Golden Gate park. We don't know what to expect tomorrow. We know it is going to be a long day and more sleepless nights to come. It is surprising how you can still function without much sleep. You just adapt to your situation. Thank you to everyone for the comments, calls, emails, and texts. Your words of encouragement are uplifting and it gives us something to look forward to. The sun has been out today- that's a change. It is still cold but the sun was a nice change. Mark Twain once said "The coldest winter I ever spent was a summer in San Francisco" That is what one of our RN's told us. Owen is strong!

-Chris

We have a plan.

We had a later start to the day today. Chelsea had a doctor's appointment that we had to get transferred to down here and luckily where we have to park our car for the RMcDH is a kaiser parking garage so we are within walking distance to the Kaiser clinic which makes things nice. We left a little early last night because we felt helpless and frustrated with everything and need to remove ourselves from the situation. We found our way to a Bestbuy and bought a new series to us called Entourage which is pretty funny. We try to watch it and take our mind off things. When we got back to Ronald's a real estate company had volunteered their time and made everyone in the house a nice dinner. We have noticed this happens almost every night during the week. It's nice to not have to worry about cooking after a long day.
Owen did good through the night. He is very strong and they comment on that often. I don't think that I have mentioned this before but he had a Arterial Line placed when he intubated. This line goes directly into an artery instead of a vein. This allows them to get continuous blood pressure from Owen and draw blood from as it well. Owen had to have another IV placed which is bigger than the others he has had but I am good with that. The bigger the better is what I am use to.
Owen's surgeon came and talked to us today. His plan is to connect a shunt from Owen's Aorta to pulmonary artery. He described this as being the safest of all plans and to have the best outcome. The pulmonary veins are to small at this time to mess with unless they have to. The plan afterward would be to let us go home if he is able to hold his saturation's above 75 all the time. They are looking to buy more time for Owen to grow 3-4 more months before they would have to do another procedure. We were told that this is a high risk surgery with Owen's other issues in his heart but what open heart surgery is not high risk. We have a feeling of being trapped up against a wall, on one hand we can't take him home this way because he can not keep his saturation's high enough and on the other he has to have a open heart surgery to fix something temporarily. There is the possibility that it might not work and they might have to look at the veins. What do you do? Chelsea and I are tired. We are tired of this whole process. I am tired of looking at Owen intubated and waking up from time to time. It brings tears to my eyes every time he is staring at me and just wondering "what is going on?". He looks as if he is trying to cry but can not. It breaks my heart to see him like this. A lot of people ask us how we do it. We are only doing what every parent would do. You put everything to the side, the only thing that is important is each other. We stay strong for each other. When one of us has a bad day the other is there to pick you up- Including Owen picking the two of us up at times. This has forever changed us as parents, husband and wife, friends, and people in general. Please keep him in your thoughts and prayers as well as the surgeons and all other staff that take care of him.
-Chris

Not moving anywhere!!!!

Frustrating day. So they had their big meeting today and have not decided anything. One of the cardiologists did come chat with us which was nice, we were feeling a little in the dark. This is day 26 of Owen's life and 2 weeks we have now spent in SF. We were told they talked about Owen the most during the cath meeting but no decision yet. Owen is very complicated because of his unusual anatomy, and they are not sure how to approach him without causing other problems. There is too much for me to go into about what is going on with why we are still waiting. They are keeping him intubated and he is doing well with it. They placed a NG (feeding tube) so he can eat. He's getting the good stuff from Chels so we are all happy about that. His growth was right on track the other day Chelsea calculated that. We will hopefully have a plan soon. Chelsea went to the scrapbooking hour again since Tuesday rolled around again. We are thinking of taking a half day off tomorrow or something...We feel kind of helpless, we are used to changing him, taking his temp, feeding, etc. But now we just kiss and touch and let him know we are here. I was going to wait and publish this at the usual time but no news is no news. Sorry it's short but that's all I can do today.

-Chris

Moving Forward

Today has been crazy. It started at 10:00 when we were arriving to the hospital. While pulling into the parking garage my cell phone was ringing. It had a 415 area code and that is the hospital. You just never really want a call from them. It was Owen's cardiologist on the phone. This was Owen's week to have things done. There was always a chance that they might be able to do a MRI on Owen and see his pulmonary veins that way, but it was thought by the team of cardiologist that his veins were to0 small to be to seen. I guess that they talked with whomever does the MRI's and they said that they should be able to see them. With this type of MRI they have to control Owens breathing. To control his breathing they will insert a breathing tube into Owen's trachea and take over his breathing. Prior to doing this they will give Owen a few different meds that will make him sleepy and another that will paralyze all of his muscles. These meds are common and I use them at work so don't let the paralyze med scare you, it is done to most of everyone when they are intubated. Chelsea and I were able to see Owen right before this and were able to give him a kiss. He was awake so that make it even more difficult as he was looking at us and then we had to leave him in the hands of others. Today has been my hardest day so far and I'm sure Chelsea's too. What do you do? You are so helpless. You sit and hope that everything is going to be okay but you feel that you want to come out of your skin with emotions. We did not get to see Owen until 3:oo pm and we had not heard anything. We tried to keep ourselves as busy as possible during that time but it was hard. Owen had his normal entourage of docs and nurses with him through the whole procedure from what we were told. I got the understanding that he stressed out the cardiologist and our nurse when the MD said I think I just lost years off my life with that stress and our nurse said she wanted a drink after it all. I don't even drink that often but I can see their point! I have been writing the blog through out the day and we are getting ready to head home(Ron's house) soon for the night-run some errands and wash clothes. Some of the results they are telling us are complex to understand so I will try to explain them. Owen's right ventricle that pumps blood to his lungs is only pumping 1/3 of his total blood volume. The rest will shunt across from the right atrium to the left atrium. So if only 1/3 of his blood in is making it to his lungs only that small amount is getting oxygenated. The next issue is that is pulmonary veins that return the 1/3 of his oxygenated blood. Only part of his oxygenated blood is making it to his left atrium and even a smaller amount is making to his left ventricle to get to the rest of his body. He has part of his pulmonary veins drain oxygenated blood to his to his right ventricle which is the deoxygenated part of the heart. This is why he turns so blue. He is not moving a lot of oxygenated blood around his body. Tomorrow is the big meeting, the decisions will be made from what we are told tomorrow but we have been told that before. The cath is not completely off the table at this point but maybe we can avoid that if possible. Owen will stay intubated (on a breathing machine with a tube) through the night until we know what the plan is tomorrow. He has been stable since the MRI and should stay that way. Hope you could understand the medical stuff if not feel free to ask a question and I will try to answer it. PS. if you want to leave a comment you need to have a gmail email account. Chelsea has one only for this purpose and doesn't check her email, but can leave comments on other bloggers. We do go back and read all them even if we don't respond. I will keep you all posted.
-Chris

Back in the City!

We are back in SF. We had a a nice time at home. Owen was always in our mind and heart so it was hard to even function. Nothing seems real without him there with us. We were missing our 3rd and 4th member of the family. (Blue the dog is the 4th member is still at her cousin Kalua's house. We heard that Owen had a rough night not doing well with his sats but since we have returned he has had a great day. We were told today that Owen is on the schedule for a cardiac cath on Tuesday. This will tell the docs (and us) what he is going to need. Not sure when they are going to do it on Tuesday but they said that they need a time when the OR is open and on standby for any unknown problems. We will know more tomorrow.

We slept the best that we have in the last 20 something days last night. It was amazing to be in our own bed. It was also nice to be back to summer again. The area that we are in, we have been told that is has its own micro-climate and it sure does. Everyday there is fog, the misty fog that is almost like rain. The wind is always blowing and it amazes me that it is 55 degrees everyday, it never changes. Owen had some more visitors today. He was able to meet Erika for the first time and see Jeremy again. He was not able to meet his future best friend Evan yet but soon enough. Also Nana Britton came by to and was able to hold him for the first time and took us out to dinner.

Chelsea and I are so blessed to have amazing friends and family in our life. You are all great people. I know that there are a lot of people that read this blog that I don't even know and you care about us so much. To my co-workers at Kaiser Roseville, You are the best. People always ask me why I work in the ED. It is because of you all that I work there. I will send out an email to you all soon. Sorry for no pictures but I am doing writing this from a old computer at Ronald's and their wi-fi is not working.
-Chris

Recharge of batteries?

Most of the time when I think of the word "home" I get teary. Today we decided to get a little taste of it and attempt to re-charge our batteries. I had a to do list a mile long and Chris's was also longer than desired. Also, a little extra push in the north-east direction was Portia and Trey's wedding, a good friend of many years. The wedding was 5 minutes from home, we needed to go and check on the homestead, and also pick up dinero from the state which was held at the post-office. Thanks to Ronald, we were up at at 'em early today, saw O for a while, fed him, changed him twice, and snuggled him so! He had one of our favorite RN's again today (the one from Folsom), so we felt better about being far away. We have also called at least 4 times to check on him, and he is doing well. Eating...Sleeping...Missing us...doing good! We jetted up the hill, picked up chicken supplies, made it to the post office, and headed...home...homeward bound....weird! But still didn't feel right without our third (and cutest) member of our family. We made it and were buzzing around most of the day. I was trying to find clothes that fit this transitional body I'm living in. I was also packing warmer items (who really needs tank tops in August in SF? not me!!), and marvelling at the work that Wynt and Lindsey did in our garden the other day. While in the garden, I noticed things were looking a little limp...Chris checked the drip system that is on a timer...batteries dead... oh no! Who knows how long they had been dead, but he is down there right now replacing them and also drilling through the side of the barn for the chickens to have a place to lay eggs. Against warnings from my co-workers (Linda:) ), we did not go easy on the garden and home commitments.... and there is a lot to do. In a normal situation, if we were actually home with a newborn...this would be different...I'm pretty sure we could hang with keeping up with it..but anyway, Chris built some egg laying bed things for the chickens to lay their eggs in with a hatch that the eggs can be gathered through. He is down there now with his truck lights shining down through the garden and aiding him in this endeavor. Oh what a man he is. Did I mention that was after we went to the wedding?? We went to the wedding, enjoyed the special ceremony, and had a little time with the bride and groom. We decided before it started we needed to leave at 730 no matter what to complete all our tasks and still have a minute of down time and rest. By 7 we were thinking...stay or go..is it rude to leave before the meal or rude to leave directly after? I didn't bring my pump so also had to think about this schedule as well. We were dismissed to go get our meals and our time schedule was adhered to. We also decided we were allowed to do what was best for us at this point in our lives. I got a few special moments with the bride-which you know are hard to come by. We got to visit with the host and hostess, thank them, and we were left. It seems like Chris is the better blogger, I am all over the place. I am trying to help him out by starting the blog to get him to relax sooner:). Since I am in reverse-side-backwards order of our day, earlier today we had some special visitors. Linda from Chris's work, and her family, Brian, Dillon, and Meghan drove all the way up to our home with a special delivery. The first token was a huge snoopy card signed by over 80 of Chris's co-workers. We read through every single inscription and cried a lot. The second token was an amazing collection that everyone (ER, radiology, EVS, MD's, RN's, techs, you name it!) poured their heart and soul into for our little Owen. Words cannot describe the wonder that we have and the thanks for the overflowing love that people have for us and Owen. We are so amazed at the support that we have and it brings forth such overwhelming emotions. I have said it before and I will say it again, I get emotional not only from our situation but from the positive support, love, and prayers that we really can feel from all of you!!!! We also received many amazing cards in the mail, which was really nice to come home to. The Payne's, we will call you tomorrow on our way back down the hill!! My co-workers are on round #2 of awesome support and congrats cards signed by all! Also in the mail was the bill for the air flight down to SF--sure hope we don't have to pay that...Chris called on that today but no answer on the weekends. That was not a kind piece of mail. Anyway, this was a whirlwind of a day, and we are unsure yet if our batteries are charged...I wouldn't go that far...I don't think they would be as new parents anyway.. But I would say that the warm summer air up here sure felt good. And we could just feel that O was aching to come with us, and that he would have been the star of the wedding. But Portia and her family reassured us that when she comes and visits again we would all be hanging out at our home and reminiscing of those harder times. I just can't wait for that!

-Chelsea

Day 22- Can I get fries with our room?

He is a little creepy but means well.

Owen has had another good day, He is hanging in there. He is like your normal newborn right now except for the medical equipment attached to him. Eat, cuddle, sleep, poop and pee is the extent of his day. We were told to enjoy this because if he does need surgery we won't be able to hold him or change his diapers for the days following the surgery. We are enjoying this time that we have which seems like a calm before a storm. No major change in condition or plan. We are waiting until Tuesday for the decision to be made on Owen's plan of care.

Today we moved to another place to stay. It is the Ronald McDonald house. This place is nice and offers you whatever you need. They have donated goods of all kinds including food. I was half expecting to get a super sized fries when we walked in the door but were greeted by some nice people instead. McDonald's is known as "the Devil" in our house but we may need to rethink that. (On road trips Chelsea won't even stop at one to use the facilities!) Not only do they provide weight gaining food but they do good work for their community. The room is nice and we have kitchen space, including fridge, pantry and freezer space. They have volunteers who come in and cook dinners for all the house guests which will be nice to enjoy at some point. We will miss Casa de Rich but we might go back if needed. We are forever grateful for what everyone has provided us.

Owen continues to have great nurses while being here. They all are loving and compassionate with him. I know that it takes a certain person to be a nurse of any type but to work with these small people is just amazing. Chels and I are still doing good. We enjoy the time between feedings and diaper changes as any new parent would. Chelsea has been reading while holding O, and I blog/surf the net. When mom leaves for a break or to go eat, Owen has his own TV in the room and we have logged many hours of ESPN already. We are tired of hearing about Brett Favre and Tiger. We were able to watch a whole Wed night baseball game the other night so I am teaching him the ropes already. Breast feeding has been good the last few days. We could never get a lactation consult at Roseville which was weird that we could not but we asked yesterday and had one in our room here in about 1 hour. Since then Chelsea and Owen have improved much together. The lactation consultant really helped us all relax during feeds which could be stressful due to hunger, crying, and desaturations. Today Owen had his longest session of breast feeding that lasted about 25 mins.

The bonus about staying at Ron's house is that it is about a 10 minute drive away. We are able to get in more time with O which is very important. We imagine that the RN's here like to get Owen as their assignment because we do all of his care while here. AND he is the cutest kid on the unit...no, the hospital!
-Chris

Day 21-Groundhog day

The last few days all feel the same. That is why I titled it groundhog day (like the movie). No real changes he has been holding steady. Sats in the high 70s to low 80s. I don't think this is going to be good enough to go home with. Some readers might be wondering what is going on and why are they not doing anything? They are doing things even as it might look like they aren't. Owen is very complicated and 1 of the doctors said that he was having dreams about him because he was thinking about him so much. They are not wanting to do anything to this little body unless they have to. The question is, is Owen turning blue from his Ebsteins or is he turning blue from the pulmonary veins that are not draining the right way. We were told if they do the open heart they will only fix 1 problem but they are unsure what to fix at this time. They have a meeting next Tuesday with the cath team and all of the cardiologists to make the plan. I think Owen will more than likely need the cath to find out what his anatomy is really like.

Chelsea and I were next on the waiting list for a room at the Ronald McDonald house here in SF. These rooms are free and close to the hospital with FREE parking. They are private rooms most with private bath. You share a kitchen and common area with other parents who have kids at the children's hospital. So we are leaving Casa de Rich tomorrow but might be back if Ronald's house does not work out. We get a lot of people asking how Chelsea and I are doing. We are doing good. As best as we can under the circumstances. We both think that this is the longest that we have been around each other for this length of time. We are normally very independant and with different schedules. We are doing surprising well. We both have our moments but the other is there to pick you up. As we have for years, we continue to balance each other well. We miss home a lot an can't wait to be back, back to what is normal. What is normal anymore? And what would normal be like with a new baby anyway? We have only been doing this for 21 days and others have been doing it much longer so we always keep that in mind. We know that someone always has it worse and our situation could be a lot worse than what is for us and Owen. Things are good and we look forward to this being a memory. We look forward to making our own "normal" with Owen at home someday. Owen had visitors today, he was able to meet Jamie and Kyle. They both had the chance to hold him and did well with the both of them. Sorry for the late blog. I was trying to type and also trying to help Rich diagnose the surround sound problem but that didnt work out so well.

-Chris

Day 20-Owen's stats

What do you expect-- you give me a recliner, I am going to fall asleep. Owen is sleeping too.

Owen by the numbers=

Weight- 8 lbs 3 oz

Length-20 inches

Number of dirty diapers a day- 10

Number of visitors- 17

Number of times Owen has pooped on me-2

Number of times Owen has urinated on parents -2

Number of nurses that want to date Owen-countless

Number of times Owen has turned blue while crying- countless

Number of times Owen has scared the crap out of me- at least once a day

Number of hospitals Owen has been to- 2

Number of echos Owen has had in utero and out-9

Number of cardiologist that follow Owen-7

Number of days in the ICU- 20

Average mls of breast milk that he eats during feedings-90

I have been starting the blog early in the day while watching Owen sleep. He has had a good night and morning so far. So as you know his NO was stopped yesterday and they have also stopped he the high flow O2. He is now on 3 L via NC (nasal cannula aka plastic tube that gives him more oxygen) with regular flow. He has been in the mid 70s for the most part this morning. As the day progresses things change but we will see. As before we are just waiting and watching. If we can keep progressing this way and he does well we might avoid intervention. This is still optimistic but we try to stay positive.

Since this is a blog I can talk about what ever I want right? Complaints that I have to get off my chest are listed below:

The elevators here are beyond slow. When you are walking, if you are a slow walker, please walk in a straight line, don't walk like your drunk, you are in my way when I am trying to pass you. My fellow men, raise the seat up when you pee, some of us have to use the public restroom for things other than urinating. Don't pass gas in the elevator-- wait 30 seconds until you get to the floor that you are going to --it will still come out then. Please don't touch me in the elevator, I am not touching you. Just don't even talk in a elevator I don't want to hear about that girl you just met. I know this is a children's hospital but the waiting room is a spot for parents to get away so when your kid is screaming at the top of their lungs and they are not a patient, that's not OK. Sorry I had to get that off my chest and now I feel better. Thanks for listening, will update if there is anything to update.

-Chris

P.S.-It is still summer right? Why is it so cold everyday here?

Day 19

Today had been a good day so far. I am starting the blog early. Owen just had the Nitric oxide turned off for the first time. They had been weaning to N O for the past 3 days and we are at the point today that it can come off. We now will wait and see how he does for the time being. The saturation's have been sitting in the 70s today while happy and but they will drop when he is mad. He had another Echo today done by the chief of what ever department he was from to get the best pictures of little Owens very little veins. They still continue have a hard time a trying to see Owens little (yet very important) veins. So the plan for now is, (not that it won't change in an hour) that if he has no further improvement he will have a cardiac cath done on Monday or Tuesday of next week. This has given him an ample amount of time to improve and get better. Of course the main surgeon is out of town until then so they will not attempt the cath until he is back just in case they need to go in. The heart cath will be very diagnostic to determine the real layout of Owen's veins. In this procedure a catheter will be inserted into Owen's vessel in his groin area and advanced up to his heart. Once in the heart they will use a combo of live xrays and the injection of dye through the cath and this will show his true anatomy of the vessels in the heart. So it is the same story of waiting and seeing what happens. We must be patient but it is getting hard. Owen was able to visit with aunt court and grandma Marcia today. Chelsea was able to get out and go to a scrapbook making class that the child life team puts on in the hospital. They allow you to print out your pictures and give you all the supplies that you need. Chelsea made some great pages of Owen's beginning days of life.

-Chris