Home Again

As I sit down at the desk this morning, I glance over to the Office calendar and the date showing is Wednesday April 13. "I know about your diabolical plan. I found a copy of it in the copier tray." Ryan, to Dwight. That was the day we left home, not knowing how long we were going to be gone. We were preparing for about a month, as last time was 46 days in total in the hospital. We made it by this time in a mere 12! We came out a little more grey, and a lot more thankful. Chris and I had one time together away from the hospital (ok out front of the hospital) Where we could connect and decompress a little. Other than that we were where we needed to be, at Owen's side, or resting at Ron's. The kicker here is that when you are so immersed in a situation, it is hard to actually digest what is actually going on. I felt the only emotional releases I had were on my drives/shuttles over to Ron's, and then I stuffed them away so that I could sleep. There was too much to be done at the hospital, between playing with Owen, calming him for iv placements/labs, helping manage pain, giving massages to Owen, distracting him during ECHOs and EKG's, feeding/changing, pumping, being available for when the care team came around, reading to Owen, distracting him from pulling/itching at his sternal incision, chest tubes, ng tube, 3 leads, O2 sat monitor, blood pressure cuff, and IV sites. There was just enough time to eat and pump, but it was even busier than home, so I was off most days in my pumping. It takes a lot for me to miss a meal, however! Basically, his oxygen levels were the same without oxygen as they were on 2liters. He hangs out in the low-mid 70-s. When calm or sleeping he goes up into the low 80's, and when crying or mad he dips into the mid 60's. This variability is normal for cyanotic birth defects. You may be thinking-His sats didn't really improve much- which has been on our minds as well. The fact of the matter is that Owen's surgeries are considered palliative, which means they are not curative. They are surgical band aids that allow him to grow, and have a good shot at activity and living. But he will never be 100%. As long as the team is fine with him, so are we! We just accept that he is stable and move on! When you get the green light for discharge, you just go go go, pack, and get outta there! Chris left and went to Ron's to do laundry, and the once over with the staff member. I packed up our stuff at the hospital. The second to last thing to be packed was Owen's toys. As I was putting them in a bag, he squealed and had a fit! His first legitimate tantrum! It was hilarious!! The last thing to be packed was my frozen breastmilk. We took our last wagon ride to the car (all of our bags were in the wagon this time.) As much as we love the prius, it isn't the best for long trips or extended hospital stays... But we fit! We could have fit in a smart car if we needed to to get home! On the ride home, while Owen was in a benedryl induced nap, I couldn't help but let go of some emotion. It is such a whirlwind of emotions with any procedure your child has, let alone 4 cardiac interventions. The roller coaster was a bit smoother this time, but that memory of "last time" is still so raw that it is challenging to put that out of your thoughts. It felt so dang good to be free, to be on our way home, and Owen leaving with the same tube he came in with, no more, no less! With a quick stop into the pharmacy to stock up on prescriptions, we were home in a jif. We were welcomed by Julie and Shane, who were using their day off together to help us out. Julie was on the riding mower and Shane was alternating between the push weed wacker and the hand held. These two were out on our property until they ran out of light. It looks so amazing, and we are so grateful for your service to us. I think I'm going to log roll down the hill later on today! It looks like a park out there. Your willingness to help us out just makes me get emotional all over again. You guys are the BOMB!

When we walked into the house, Chris and I kept saying how different it looked inside. The lighting was beautiful around 5pm and it felt like we had clearer, brighter, happier glasses on. There is nothing like the sweetness of home. Thank you Jay, Mat, Elly, and Ash, and Kim, Jon, Rylee, Brody, and Taylee for all of your help around the house. Mom was able to bring us the mail halfway through our sf stay. Last night Owen's hives were getting worse, despite the round the clock benedryl. We gave him a bath with our castile soap, and put him to bed. They started to crop up again and spread about 5 hours after the dose, and 6 hours is the recommended time of administration. He seemed to sleep okay, besides itching his incision site as well. He was back to his normal, up every 3 hours schedule. We had a great morning breastfeeding session, and he is back for his nap. I am headed that way myself. Ah, to be home again!!
One of Owen's faves from last time, Linda.
Aunt Jac, Uncle Colin, and Owen buried in his crib of toys.
Owen's homeboy Vince.
Lean back...
If you look hard to the left you can see Shane working the hill!
Julie rocking it on the rider! THANK YOU!!!

Bugs, Bath, and Beyond

BUGS
Yesterday (Easter) I noticed he had some little red marks on the nape of his neck, looked just like little mosquito bites... but about 10... After some benedryl and changing his sheets, they went away. But today they are back... The fellow thinks they are hives, and havent tried anything new...hmmm. more benedryl for the chick.
BATH
Owen has been known to be the dirty kid around here, so he got a bath the other night. It wasn't super enjoyable for him, as he cannot submerge, but it got the job done. He will soon get back to playing with his rubber duckies at home.
BEYOND
Sadly, Owen has tested positive for c. diff:(. In a nutshell, this is an infection that happens either due to antibiotic overuse, or from coming in contact with another who has it. The kicker here is that it needs soap and water to be killed, not the sani gels or foams...Which get used all the time around here... not all rooms even have a sink... So the bummer for Owen is cramps (we would imagine) and lots of pooping... But so far, it hasn't been anything like the horrible bug he had in January. Hopefully he will stay hydrated and not have any complications. It seemed like we were at a standstill this weekend with his care. Weaning the oxygen happened one time, but he went into the 60's. Currently, he is at 74% laying in bed asleep, off of oxygen completely.
Haha, guess I could have used bed, bath, and beyond as the title, as my next subject is bed! Oh well. I went to Ron's last night for my first night sleeping there. It was also my second night away from my boys, and my second decent night of sleep since....hmmm... ANYWAYS, I slept from 10ish to 2ish and went right back to sleep until 7ish. Wow, that was a dose of something delectable!! Chris stayed here with Owen and Owen slept more than normal, only waking once himself. Whoot! Chris has been back at Rons today making up for some sleep he missed. Im so glad I was here today, Owen had to get another echo to make sure his pleural space looked good. He was sad pants during that, and right after I needed to pump but as usual Owen needed his mommy too. So, that sweet little man was my pump! For 30minutes! Wahoooo! It was comical and wonderful all at once, and really made me feel so happy for pumping. I know moms who pump forever and dont get the bonus of breastfeeding. The comical part was I was standing, and Owen was laying on his side in his crib, with all of his tubes behind him. I didn't move a muscle because his sats were in the high 70's-low 80's! We snuggled a lot today, and his tummy doesn't seem to be bugging him too much. I'm going to eat while he is snuggled in bed. Hope Easter was wonderful, it was interesting being here. A volunteer brought an easter basket for Owen, so nice! Next year will be even sweeter!

Still here.....

We are still here. As I guessed we were not able to go home today and I know that we won't be able to go tomorrow as well. We were unable to remove Owen from the oxygen today. When we tried his oxygen saturation dropped to low into the 60's for the medical people out there. Don't freak out though the goal after this surgery is 75 to 85 %. When we were admitted his sats were only 65 so he would have benefited from some oxygen at home. This kid does great despite the problems. For the none medical people out there your oxygen saturation for me and You should be around 100% unless you smoke which is bad for you by the way and it stinks. I have talked with the doctors and asked why we don't have an improvement in his saturation's and they say it takes time sometimes for things to go back to normal. Owen also has some pulmonary hypertension which could be the problem behind this whole thing now. With Owens new anatomy half of his bodies blood is draining into his lungs passively. So if he has pulmonary hypertension the blood can not flow into the lungs because there is to much pressure that it is going against. In a normal heart your right ventricle is able to pump all of this blood through with no difficulty unless you smoke. They have medications for this and the main one is viagra. Yes it can help you breath and have an erection at the same time. In Owens case it will help decrease pulmonary hypertension. We have not started that yet we will wait and see over the next day or so.

Chelsea was able to get some better sleep last night. Owen was back on his normal sleeping routine with the chest tubes out and has not even required any pain meds since the chest tubes came out. Other than that Owen and I watched baby Einstein 10 times today, we also walked up and down the hall in the red wagon with oxygen about 20 times laughing all the way. Chelseas dad came by to visit and brought some good home cooked food for us all including home made ice cream sandwiches. Good thoughts for tomorrow for improving conditions because we are going slightly crazy in the little closet that they call a room. Sorry it's short but I lack energy to do more and I have to do some laundry. I hope that you got the take home message that smoking is bad and you should take care of your normally functioning heart and lungs...

The "H" bomb.

So, big day today. Owen had all of his chest tubes and pacer wires removed from his chest today. This was a great thing to have done. I can not even imagine how those feel and hurt under your ribs with every breath. Owen has already had his discharge echo done today so that is one less thing that will have to be done. They will continue to monitor him over night and start to slowly remove his oxygen. They have mentioned that there might be a possibility of going home tomorrow night. I have a feeling that this is not going to work out. I think that will be pushing it. So I bet we will be out of here by Sunday or Monday if all goes as planned. The H bomb stands for home if you were wondering.

Owen had a lot of wagon rides again today. It is like being on a smile parade. He just makes everyone smile as he goes down the hall. I have not seen 1 person not smile when seeing this little fatty coming down the hall. All of Owens nurses ans doctors really seem to get a kick out of him and how much he will laugh at them. There is a lot of care and compassion that goes in to taking are of Owen and us. Owen received his first bath tonight since we have been here and boy was it over due. He was the stinky kid on the unit for sure.

Owen had some visitors today. Jac and Collin came by and brought Owen a lot of new toys to play with. He loves his new toys and the two of them. Owen and I on the day shift when Chelsea is not there watch a lot of baby Einstein. The same one over and over again. He loves the little puppets and just laughs and laughs at them. I don't see the humor but he does for some reason.

The tiredness continues to linger and what makes it worse is the small little space that we are in with Owen and another pt. I have wanted on many occasions to slap people for being loud. For those of you who have kids know that naps missed is a setup for bad things to come. Poor Owen can never catch a break. If it's not one thing it's another that will wake him up. For the most part Owens neighbors recognize that he is sleeping and try to be quiet but what they don't know if they are not Owen will just keep them awake all night. We feel bad because they keep putting Older kids in the room with him and you know that they are pissed by morning, Owen never sleeps well at home and Chelsea says He has been waking up almost every hour on the hour at night. Hopefully we will be in our own beds soon and still not be sleeping well but at least we will be a home.

Sunny Thursday in SF

Outside, together!

Owen laying back on 7North. This gorgeous view is right outside our room.

The golden gate to the right, and the ocean to the left. Not bad scenery.

The cutest patient ever. Yes we are a little partial:).






Today has been a great day. Owen is doing so well, and went on 2 wagon rides today. Chris took him on one when I went to Ron's for a nap. He is quite a hit in the hallway, making people smile left and right. He has been sitting up most of the day, and crossing his feet like usual. We are still waiting on 2 chest tubes...One is still milky and putting out just a little of yucko stuff. The team wants the chest tubes in until there is no drainage...Who knows when that is, but we hope it is soon. He is putting out
about 10mls/day. He is also working on his oxygen levels. They range from 65-85 even on 2 liters of oxygen. This is something that everyone anticipates will normalize (up to 75-85) without oxygen... That is something that we also will wait out and see how he does. Another thing we are waiting on is his meds. He has been on a blood pressure lowering med via iv, as well as iv lasix. They have yet to switch him to PO/ng medications for those. But it is so nice to see him acting like himself, pulling tubes, putting random things in his mouth, smiling and having his voice back. He had a very sore throat from being intubated, and I would say his cry and voice is back about 90%. We have had a great RN today who basically shoved us out the door. She said Owen was her only patient and told us to go enjoy the sun. So we went outside and sat for about half an hour and enjoyed being outside. We then had some frozen yogurt like old times:). Owen is becoming quite the tv junkie and has his own personal dvd player. He has been watching baby einstein when awake and laughs at the puppets that used to scare him!











We are so dang lucky that Owen is healing and doing so well. We are so thankful every minute, and even though we are tired, it does not compare to what he has to go through. He is so awesome, it amazes us both.











Owen got to visit with one of his favorite RNs from last time, and in the middle of the night I saw another one. I wasn't speaking clearly or thinking clearly but hopefully she can come see Owen soon. We had her a lot when we were here before, and in 12 hours you get to know people pretty well.











I forgot to thank Rebekah, Jeff, and Sera for our yummy dinner from Beautifull last night. The restaurant took longer than their slated delivery time and wanted to comp another meal to us another time. Double Score!!











A big thank you to our house sitters, egg getters, and mail collectors! Thank you to the Bowens for watching Owen's "doggie Blue". Owen misses her, but we hope to be home soon.

Well we have been slacking in the blogging department due to excelling in a few other departments, namely: 1. Tube watch for Owen 2. Switching between night and day shift between Chris and I
3. Napping at any chance possible 4. one of us staying at Owen's bedside 24/7

This experience is much different than before. Owen doesn't sleep all day, so we can't necessarily go out to eat and know he will be out for 2-3 hours. We also don't want to leave! We have been parents a little longer and know that even though he has good care we just want our eyes and ears here as well.

Yesterday we transferred out of ICU. I was at Ron's sleeping when Owen and Chris came to the step down unit. This was a step in the right direction for sure. Unfortunately Owen had a de-satting episode into the 50's shortly upon arriving to the unit. Chris noticed that the oxygen level was a different gauge and it was set to .2 versus 2 liters. That was not optimal! When the time comes, Owen will be weaned off of it, not just a decrease all of the sudden... He recovered after about an hour. It is never a restful time when he does that, he always takes a while to recover. Must be his unique anatomy and ability to continue to freak us out. We are at the point where you just have to joke about it, though. I was telling the RN last night about how a lot of moms I know think that their babies getting their shots is a big deal (it is, and it is all relative, I know:)) but the thing to be happy for is when your baby cries he/she doesn't turn a nasty color of purple/blue/grey....

Which brings me to yesterday. Mom and Wynt came by to see Owen. Owen got a beautiful easter basket from Wynt and she enjoyed reading him all of her books. Grandma got some good time with Owen as well, she lets him crinkle books... those grandmas are such spoilers! It was a challenge to work in getting a few hours of sleep but I went to Rons in time to get back for visitors. Wynt and Mom were going to watch Owen so Chris and I could spend a little time together. After owen's de-satting episode we decided it wasn't a good idea to leave, and he was also getting a chest xray (daily routine here...) so we wanted to be around for that. There wouldn't be much peace of mind leaving. We are so lucky that Wynter came from Dad's with cooked stuffed shells with homemade pesto and tomato sauce. Perfect! So we ate that for a late dinner in Owens room and then they took off. Chris hung out for a little while longer and I vented a little about being tired and feeling a little wacky. As usual he listened and consoled. I have contemplated switching to the 'day shift' but I am already on this schedule of staying the night here, then catching 2-3 hours thru the day that I don't want to try to get back to the other way. I think it might be harder now.

So I was staying awake a bit to start Owen's feed, pump, etc, when he woke after being asleep for about 15mins. He was very irritable and seemed in pain. We opted for some meds to calm him and chill him out. His IV site appeared to not be working...and needed another access point. He is on a continuous infusion of a blood pressure med which needs an iv, and they just like to have access, especially because he still is randomly desatting, and he doesn't really make anyone too comfortable yet, between his chest tube, sats, etc. So, to make a long story longer, it took 2 hours, 4 RNS, 1 MD, and 5 pokes to get another access point IV for baby O. I normally just go with the flow, but man, this was from 11-1 in the morning... the one night we didn't have a roomate!! One I got over the fact of not getting sleep, I was there for Owen. He needed blow-by which is additional oxygen because he was so freaking out that he was turning aformentioned colors that are not becoming to anyone. He finally was so exhausted that after the iv was placed and they were taping him up he fell asleep.

WHEW! Today was no exception for roller coasters. Chris noticed Owen's chest tube pleuro-vac wasn't bubbling (therefore not suctioning) and also that his chest tube did not appear to be all the way in his chest. This called for a stat chest xray (told you this was a daily routine) to confirm that he did not have air in his chest. I think. This stuff is usually Chris's forte. So, he was fine, and chest tube came out. Wynt, mom, and the girls came back, and we went out to lunch. Pomelo, soooo good. It was good to hug on the girls since it is hard to hug on Owen at this point. I did get to hold Owen today and he was trying to breastfeed but that little bugger thought I was a teething toy or something and wasn't into it... OUCH!

I left and went to Rons to pump and nap and shower. The minute my head hit the pillow our neighbors stormed into their room and started making a ruckus... Thanks to my earphones and relaxing massage music I was able to sleep for a couple hours. Got up, showered, pumped again, and ordered some dinner from a friend who called and arranged for us to get it delivered to Ron's. I did this and made my way to Rons. I thought. There were all kinds of crazy police blocking off the street and our driver said it was the pres. Didnt know he was going to be in SF but I don't even know what day it is... Saw the whole motor brigade but no limo... Hmmmm.

Ok we are going to blog as often as we can but it is harder than last time to blog every night. Much love to all, and hope to not sign off from SF too much longer. Keep us all in your thoughts, please, we need it.

Yesterday amidst everything Chris got the news that his declining grandmother Mary isn't doing well. We wish we could be closer to be with family but we need to be with Owen. Mary is such a sweet lady, I have many good memories with and of her.

Monday, Monday

Owen has done well today by interacting more with Chelsea and myself. He seems to get a kick out of all the staff. He loves to smile at them. As for the chyle leak- we are still watching the chest tube drainage. The surgeon was less concerned with this because the volume that is coming out is so small. This is good and we will continue to watch this and pray that it does not get worse. Labs are looking good and vitals are holding stable. We are still in the cardiac ICU and will continue to be probably for the next few days. They continue to remove fluid from Owen with increased Lasix over the past 2 days which he has been doing well with. He still has his chest tubes, pacer wires, arterial line, and cardiac line in and I think tomorrow we will start to remove some of that stuff. Owen's best friend Evan came to visit but only Jeremy and Erika could come and see him. The friends had to kept apart for germ reasons but soon enough Evan will be ready to help Owen again try to remove his NG tube like in the past. What are friends for? It was nice to have visitors today to change up the routine a little. Not much happened today. Just tried to keep a 9 month old busy from trying to pull everything out. I heard that there was a little more sleep last night which is good for him. I can not even imagine how he feels. It is sad to watch him when he coughs, we know it has to hurt so bad with the chest tubes that are rubbing on the ribs and the fact the his chest has been spread apart doesn't help either. They changed the dressing on his incision and said that everything is looking good. Poor kid has a lot of bruises from multiple IV attempts. On a better note the Dietitian came by to see Owen and was very impressed with what Chelsea has been doing with Owen. I don't think a lot of people know how much time, effort, Patience and love that it takes to get through all of his feeding everyday. The amount of effort that Chelsea has put into Owen is amazing. He is not an easy baby at feeding time.

Hospital Day 4

It has been cold, windy and foggy all at the same time. But inside it has been nice. Owen has been doing well again today. He continues to get better every day which is so nice. . His chest tubes are putting out less and less and not as bloody as before. His middle one isn't working well and looks a little cloudy so they are attaching a pleuro-vac to suction out more blood. Hopefully he doesn't have a chyle-leak. This is something that would change our hospital course and lives for a while. He was on the fence last time, but ended up not having it. He would essentially not be able to tolerate breastmilk, as he would need a very low fat diet. This leak happens sometimes when the thoracic duct gets messed with in surgeries like he had. Owen would need a special low fat formula and wouldn't be able to breastfeed or get any breastmilk. We are really, REALLY hoping that this doesn't happen. We hear the formula also tastes nasty. He hasn't been eating practically anything today so we actually have requested for an ng tube. He needs the nutrition and it would also help him rest and also show if he had the chyle leak or not. He is calm and watching Baby Einstein right now. He made some cute little talking noises today which was good to hear. We are kinda blah today, tired and just going with the flow. It is challenging to spend the nights/days apart so we can attempt to get some sleep. We were prepared mentally for these challenges so that is good. We are so happy to not be worrying too much about his stability, and it is hard to complain about being tired when you see what a trooper Owen is. Chels is spending the night again, as she had a few hours of sleep at Rons and is attempting to get on a schedule. I was going to stay the night tonight but she has been on the night shift the last 3 nights so she is going to try to stay on that schedule. All is pretty good here just tired. We are so glad Owen is doing well and having more energy. Chels even got to hold him today for a bit, so that was a bonus today.

Moving on up

Traditional team Britton picture.

Owen had a better day today. We finally have a med schedule that seems to be working. They are also letting him eat which has made all the difference in the world. On a very positive note Owen has been eating everything from a bottle. This has not happened in months which is awesome for us to see. Owen prior to surgery has been getting all of his nutrition via NG tube(tube in his nose), and bonus random breastfeeding sessions mostly at night. We are not getting our hopes up on this but this is a welcomed surprise. Chelsea stayed with him last night and there was no sleep for the both of them. Owen whined all night in pain and hunger but they could not feed him. Pain control was a problem with trying to catch up to it. He has a high tolerance to pain meds because he has had so many in his day.

Today he has been just hanging out in bed. We have him sitting up in bed all layed out and looks like he is sitting in a custom lazy boy. He has not been very interactive with us. He will stare at us and put his arms out to pick him up but we can't. It is so hard to not pick him up. He will cry and give you that look. It will melt anyones heart. Hopefully in the next few days we will be able to hold him. He has been watching a lot of TV today. I have spent most of the day with him so we have watched non stop ESPN. He will just zone in on the TV and nothing will bother him. Under these circumstances he can watch as much as he wants. His labs have all been looking okay and getting a lot of lasix today to get all of the fluid off of him. He is not nearly as swollen as he was with his last surgery. His Potassium has been a little low, but no problems replacing it. He is getting ready to get a blood transfusion. This will help his sats but it is also because they have to draw so much blood from him all the time.

Chelsea left around 1030 and went to Rons. She said she felt like a zombie wandering from the parking garage to Rons. Since I normally drive I started to give her directions but she stopped me promptly, as she was too tired to remember them. She said later she could drive there in her sleep, had no problems at all.

Rich came over to visit Owen today. It was good to see him. They went out to a quick dinner for a belated birthday dinner for Rich. They went to Koo, a sushi restaurant that we tried to go to multiple times last time we were here, but they were always closed or too busy. Chelsea won't stop talking about the salmon-asparagus roll she inhaled.

And now for the belated installments of the Britton blog....

The Cashier

I have been eating at the cafteria quite a bit, as Chels gets breastfeeding mom trays. So, there is the same cashier, who is usually the only one there. When most people give you change, the change is simply dropped into your extended hand. But this rather nice gentlemen finds it apppropiate to first cup the bottom of my hand with his left hand and hold it while he places the change in with his other hand then holds my hand longer than what is considered professional. There is also an uncomfortable lean in that he does as well that invades my personal space. I have now stopped paying with cash so that I can avoid this situation.

Owen's Pre-op Yoga Moves (Written by Chels)

I have been working with Owen with his physical development. Every morning at home I put him on his stomach while I change his feed bag, heat his feed, get Owen's meds ready, get my pump stuff ready and make some tea:). This morning routine takes about 15minutes, so Owen gets a lot of tummy time. He has progressed so well, doing backward crawling, and massive pivoting around in circles. He also did one from sitting to crawl position the night before we left to come down here. When crawling he would always lay flat and take breaks. Well, here, on Oxygen, it was like he had super power for crawling! He did a full push up (plank), pushed up even more with his tush in the air (downward dog), and even did a somersault from a sitting to crawling to rolling position (ok that one was an accident). I guess if your kid is getting a little more oxygen than normal, he can maneuver around a little better...Probably should have been on some oxygen the last few weeks at home, but whatcha gonna do? Hopefully his increased sats will continue to fuel his physical development.

Owen es muy fuerte

Today has been a big day. The morning- like most these days- started very early. I arrived to the hospital about 0600 after battling with the security to get my car out of the locked kaiser garage. When I made it to the hospital, little Owen was sleeping on Chelsea's chest. He had a good night from what Chelsea said, waking every 3 hours to breastfeed for 10mins each time and going right back to sleep. We both played with him when he awoke and snuggled him to the last minute. We were able to go down with him this time to the Pre op area for some more time with him. This was short lived and it was time for Owen to go. Owen was not a fan of riding in his bed so he received some VIP treatment by the anastheiseologist and was carried. I was weird to see him getting carried down the hall by a team of doctors but it was cute at the same time. Chelsea and I decided to go back to Ronald's so she could shower then we ended up falling asleep/resting for the next 3 hrs which was nice. I think we were both exhausted and felt like the deepest sleep we had both had in a long time. I forgot to add in when we left the hospital in the parking garage it was still early and I was a little stressed. There was only 1 exit this time normally and you can exit through anyone of them. Not this time, apparently I went down the one that only card access can go down since I don't have a card and must pay cash this would not open for me. Also by ths time it was about 0745 and all the employees were leaving. I had about 7 cars behind me that we had to organize to back up so I could get out. That was awesome. (by the way before you make fun of me this was the same exit that I went out last night and paid cash at) We made it back to the hospital around 12 and waited...and waited...Owen made it back to his room about 2 pm. We were unable to go in and see him when he was dropped of in his room because the surgeon went directly from Owen's room to another babie's room to close their chest. From last year we knew that when this happens, no visitors can go into the unit or out of the unit. So we got a small update from the social worker and waited some more. The clerk brought us out a gift that Paxton's family had sent to the hospital. It was an edible arrangement of fruits which could not have come at a better time. We ate chocolate covered fruit and relished in it's yumminess, which helped quell our impatience. Thank you so much for thinking of us, you guys ROCK! Around 245 we noticed the hold had been lifted off of the unit, and we gave them a few minutes. Then Chelsea went in to the unit and only saw the clerk and the RN in the room. Comparing this experience to last time, there were so many MD's, RNs, and surgeons in Owen's room. So this was a good thing for her to see. The RN recommended coming back in another few minutes, so Chels went out and chatted with me and we got excited to see O. Going back into the room, he looked swollen but not like last time. We have been told it worsens over the next few days. They were already talking extubation the minute we walked into the room, which was also crazy to us, because he was on the vent for a week before surgery, and a a week and a half afterwards. So this sounded too good to be true. But it was true! He tolerated extubation very well and we came back into the room. For the next few hours (and still..) his pain is in need of managing better. He has a high tolerance to meds and his blood pressure has been high due to pain, agitation, etc. He kept getting more meds, more meds, and still whining, crying, and sucking his paci like crazy. Good thing he was finding relief in the paci. This was also weird because he has really given up taking the paci for the last few months. We aren't sure if it is a regression, or if it really is the only comfort he has right now, but we don't really care. We are glad he can find some relief in that. He is still restless and uncomfortable, and the second the paci falls out he screams with a desire to have it back. Chelsea will be the paci-putter-inner tonight, as she is pulling the night shift. Owen's sats are in the upper 70's right now, which is great. The surgeon is hopeful that they will come up even more over time (and yes, also over a longer time, they will start to come down, but that is far away we sure hope!) Owen was fighting a temp, and the RN is checking it right now. Hopefully it is lower or gone and that will be one less thing to worry about. A little one, only about 99 which isn't worrysome. YAY! We LOVE OUR FAMILY AND FRIENDS AND SUPPORT SYSTEM. These days are so full that it is hard to have visitors, and a challenge to blog even. This was written in a few shifts. We are amazed at how fast this process has gone so far, and hope that his recovery continues to follow the same path. The Glenn procedure has it's own challenges, with increased blood flow to the head and neck, so Owen likely has a headache, and will for a while. We look forward to seeing family and friends, and love love love the support via texts, email, facebook, and on the blog. THANK YOU! We CAN feel the love. Stay tuned for the overly friendly cashier update, as well as Owen's pre-op yoga moves. Signing off for tonight, Chels, Chris, and Paci-loving, tubeless Owen By the way, the title of this is spanish and means Owen is strong. We say this to him at home and he laughs out loud when ever we do it.

Pre-op

This is going to have to be short and sweet. It was a very busy and tiring day for the 3 of us. Poor Owen had to go through a lot of stuff today on no naps, and not sleeping well last night. Owen had lab work, xrays, echo, ekg and multiple other things done to him today. He was finally falling asleep at 9:30 pm when I left the hospital. Chelsea is staying with Owen tonight in the hospital so I hope that they both get some good sleep. I am at Ronald's and will be going to bed after this. Owen is first case in the morning at 0630. This is good, just to get it done and not have to think about it all day. Like I said yesterday tomorrow is a very big surgery with a lot of risk involved with complications. They added another procedure as well making 4 things to do. He will have his shunt taken down, the Glenn procedure and fixing his pulmonary vein which will be the hardest per the surgeon and the 4th is he has a hole between his 2 atrium and this has been helping him in his case. They are going to make an insertion in his right atrium and cut that hole to actually make in bigger. This part I am not sure for the reasoning why and will learn more about it tomorrow. So just a few things to do. He will be on bypass for awhile but they are less concerned because he is much bigger. The surgeon was very happy with Owens weight gain. In the cardiac kids world, Owen is a moose compared to the others. He was impressed at all the hard work. While the surgeon was there the most interesting thing happened. Owen had been fussy all day whenever someone would come in but when the surgeon came in Owen was calm and just starring at him like he knew him. I was weird if you could have seen it in person. Owen had a look of understanding and calmness, it was a touching moment. I must go to sleep it will be an early morning with a lot of stress. Thank you all for the support and prayers and I will update tomorrow with all the good news. Sorry it was so short and had no jokes but I will include some funny stories in future blogs like the over touchy male cashier in the cafe. Chris

The Castle

We made to San Fran in good time today arriving around 3pm. We quickly found our hotel the Castle Inn and it's not bad. Parking is always a challenge, and for those of you who have read the past blogs know this is one reason why I don't like this place a lot. We picked this hotel because it has parking and its FREE. We chose to park in the basement thinking that it was the only area to park in. Needless to say I am glad that we are in the Prius because anything bigger could not have made the turn into the garage. After making it through the 7 foot wide door you drive into a small basement garage. Once in the basement there was only 1 stall left. There was a reason that no one was in this stall. This stall was almost impossible to fit into and the wall has writing on it- no backing into stalls. (I would like to find the person who posted that and have them come park for me!) I had to do about a 25 point turn and back into the stall with about a 1 inch clearance from a concrete post. I made it work and fit in just like a tight glove. Hopefully I can make it out in the morning. Enough car talk, tomorrow we check Owen into the hospital at 0900. No one has really given us a plan yet on what is going to happen. I assume we will get Owen checked in, not sure if we will go straight to the cardiac ICU or the transitional care unit. They will then check him in with vitals and questions the normal routine I'm sure. We will talk to the Mds sometime during the day to get the exact plan and see what time he will have surgery on Friday(hoping for first case in the morning). Owen will have the same surgeon that he had last time and the last words he said to us was "get him bigger for me" and we did. Chelsea did most of the work with growing this little guy and trust me it has been a fight for every oz that we have put on him. All of the pumping, fortifying, night feeding, spewing, has been worth it. Owen at 18 lbs. We have doubled his weight since the last time we were here. The size was so important so that they could operate on Owen's little vessels. It was too risky on Owens life if they were to attempt this last time. This is a scary and very serious surgery that Owen is about to have. There will be 3 major things completed in this surgery. First after opening Owen's chest they will place him on the bypass machine which will take over the pumping and oxygen perfusion that the lungs and heart normally do. They will then take out the shunt that they placed in the last surgery. The next step is to either fix his veins so that they are attached to the part of the heart that they are supposed to or do the Glenn procedure which is removing the superior vena cava and connecting it to the pulmonary arteries. I am not sure which one the will do first, we will find out tomorrow. Chelsea and I are scared, nervous and about everything else you can think of. There is not much more you can say than that. We have our love for each other and what else do you really need. We have done this before and will do it again. Hug your kids tonight and keep Owen in your prayers. PS At the bottom of our driveway leaving, Chelsea looked down at her phone and had a new voicemail. We had gotten a room at Ron's. We have been told that you had to be admitted into the hospital to get a room, but we think sometimes it's who you know. We are thankful, so thankful for this opportunity. The shuttle is such a nice thing. PPS The Castle is near Jamie and Eric's so we had a quick bite with them tonight. Good to see you guys!

Spring Chicken

Oh what a JOY Owen is. He has been changing so much these days, it is amazing. He talks to all of the animals around our property. The horses, goats, lambs, hens, roosters, llamas, dogs, donkeys, cow, and pig provide Owen with entertainment on our daily (or twice daily) walks. We are so lucky to have our own zoo in our backyard! Our little spring chicken is getting ready for another heart surgery on friday. We have been preparing so much to get to this point again. Owen doesn't even know it is coming, but I think he does sense something is up around here. He has been such a great companion, helping me with the laundry, gardening, and taking care of the chickens. Chris has been very busy getting the property ready with burning, mowing, weed-killing, roto-tilling, amending, weed-preventing, and garage cleaning. This is a busy time of year around here, regardless of what is going on with Owen. Grandma, Na-Na, Wynter, Courtney, and Aunt Jac came over recently to wish Owen a bon-voyage. Chris, Owen, and I had a wonderful family walk just us tonight. That is a tradition that my parents did growing up, and Chris and I started when we moved out to the country. A nice walk after dinner- the fresh air calms the mind and relaxes the soul.
His dexterity has really come a long way recently. Even though he doesn't eat much- still just breastfeeding sessions at night-his pincer grasp is fantastic, and has graduated to the point of finding every little thing on the ground. He also has been a fan of tags on anything for some time now. He pulled up on me last week from sitting to standing, and today went from sitting to a crawl. He pivots around, crawls backwards, and can get around pretty well. He stops and takes breaks where he just lays flat on the ground. He is calm when he does this, so I'm not sure if he is short of breath or just doesn't want to work to move around.
These sweet little explorer's hands just melt my heart. We haven't left yet but are already pining to return home.

Getting Owen's Garden ready

This photo describes my impromptu gardening style as a mom, also called 'Just get it in the ground before Owen needs to eat again!'Radish patch, lettuce that has re-seeded itself, and potato starters.
Owen got used to the sound of the tractor after a while.
Chris tilling in the compost. I love me the smell of dirt!
On the way down to the garden, see how Owen fondles the wheat grass-so cute!
Just chillin', getting a ride to the garden.

Bloggin thru photos

Owen's quite the snuggler.
Falling asleep on any comfy person around!
Not too picky about where, either! He has never fallen asleep like this, but this was the day after the cath.
So much for keeping his leg straight for 6 hours... This was about 3 hours after the end of the cath.
How we spent the day before the cath... Hiking around and enjoying the beauty around!

Whelp I have a few hobbies but this is acutally pretty "easy" to do... There is no set up, clean up, or take down, and I can leave it to rush to Owen's digestive outbursts as needed! Here are a few recent photos...