Day 18 of Life

Items pictured above: mobile, sock on hand, paci with towel, and mini Blue dog!

"Whaaaaaaa? You think I look like Dad??"

the Britton 3, or CCO.

Baby O had a great day today! Chris and I started slowly today...We were dragging to say the least. We know as new parents that we would be tired anyway, but it is challenging with the emotional aspect of things, as well as not being in your environment for a few weeks. I called into the hospital (like usual) in the morning, and his RN was really sweet. We met her the other day and she actually lives in Folsom and comes down to SF for 2 12 hour shifts a week. She said that she was holding him during his breakfast and he was staring at her, super alert after he ate. She was moving our picture in front of her face so he wouldn't be staring at her! She got him a mobile and attached it to the top of his bed/heater thing. She also got him a blanket that had frogs on it. We didn't know that they allowed personal stuff, as Roseville didn't, but it makes him look a little more like he is at home, even if he doesn't notice! She also put a sock on his hand with the oxygen sensor to keep it in place (genius! everyone else had to come in at least once an hour to adjust it!) She also put a towel through his paci to weigh it down and keep it in. She was good! He did look a little goofy though! We held O all day long and got lots of snuggles in. He was in the high 70's and 80's most of the day and just a few little lower spells. He had some good time with Mom breastfeeding today and snoozed and peed on Dad also. I finally downloaded some of my pics from the digital onto the computer so there are some older ones on here as well.

Owen was also weighed today-gained 3 ounces since birth. He has been off of IV fluids for a week so this is very likely his true weight. His weight never has dipped down, and I guess at this point he should be back up to his birth weight but he is over! Ah, the only time in life when rolly thighs and double chins are cute!

Now we are hoping that O can scoot by without surgery....but still not sure yet... It seems like the fellows and attendings never leave the hospital...but we did hear that his cardiac surgeon was leaving town and wouldn't be back until next week. We trust in him that he wasn't positive that O needed surgery today and hopefully this week will be healing for O. If not then at least the team didn't rush into it. O has such a fun little personality-a pretty easy kid! He doesn't fuss between feeds/naps, only squirms when he pees/poos (which is right after/during a feed!), and chows down like no other. He burps when you want him to, and has only peed on us lately (we know the pooing is likely to happen again-it's only a matter of time, right?!). He just seems like such a good baby and we can't wait to get to know him 100% of the time. Not much else new here, but I am real excited for a ucsf sponsored scrapbooking hour for parents tomorrow! They provide a photo printer and supplies. Mom and Court are coming down, but I am hoping that they can accompany me for some crafty time (whooo-an outlet for fun that is O related!!) The programs here are very nice- 10minute chair massages (haven't done those yet), knitting classes, crafty stuff, and baby massage classes. We have been to enthralled in O to leave and do any of these wonderful programs but maybe tomorrow. Probably will head to bed early tonight...sleep deprivation is taking it's toll on us...But we are hanging in there and know there is always someone who has it worse. It is nice that O is otherwise a healthy kid:)

Love all of you and all your love for us and Baby Owen, we feel the healing thoughts and wishes!!

-Chelsea

"Quit playing games with my heart"

Owen and mini Blue

Owen with Mom's glasses this time

Mom caught me sleeping twice today

Papa Schlitz and Portia with baby Owen

Papa Schlitz and baby Owen

Owen's current life soundtrack would start out with track 1 being "Quit playing games with my heart" once sung by the very popular Backstreet boys. That is how we feel at times but we know that this is a waiting game. The cardiac team along with Owen's regular cardiologist have decided that they feel more comfortable with waiting 1 more week and giving his body more time to allow a decrease pulmonary vascular resistance. We are good with this, We both know that surgery would help correct this but this is major surgery in this little body that comes with risk. So we are down here for another week at least, in a perfect world we could come home if he begins to have better sats but that is being very optimistic at this time. We will re-evaluate next Sunday. He had another Echo today of his heart which was 2 hrs long. One of the many cardio docs did this and took about 300 images. Owen had some visitors today, friend Portia came by and got to snuggle with little O for awhile. Papa Schlitz was able to come by and hold Owen for a long time. Papa was the one who bought the "moose" his antlers. We have been staying with Rich (papa Schlitz) and it has been great. When we arrived the first night one of our longer days at the hospital he had made us stuffed pasta shells with shrimp and artichoke hearts and ricotta cheese followed but homemade chocolate chip ice cream. It was great. Then I awoke the next morning to the wonderful aroma of BACON coming the hall calling my name. The bacon was accompanied by an omelet. Last night when we got back to his house there was BBQ kabobs with an awesome salad followed of course by homemade ice cream. Again this morning while in the shower the smell of bacon cut through the bathroom and into the shower with me. I cut my shower short (not everything needs a deep cleaning!) and had to have the bacon and apple Cinnamon pancakes. We are eating great and I can not wait to see what is on tonight's menu. Owen was able to be moved out of the overflow area and back to the cardiac ICU. He has done well today saturation's mostly in the high 70s. We will wait and see and hope that his PVR (pressure in his lungs) lowers and won't need surgery for now, but who knows what tomorrow will bring us. Thanks for the support.

-Chris

To cut or not to cut?

Chelsea after eating carbs. She won't be happy with me posting this.

MOOSE

Owen had a much better day today. The medical team says that it is more than likely from the blood transfusion. He did well with more time breast feeding today and probably drinking about 2-3oz of breast milk at each feed. His saturations were in the high 70s to low 80s all day so that was good. He continues to be on high flow O2 with the Nitric oxide. When we arrived to the hospital this morning our nurse had told us that the cardiac surgeons Nurse Practitioner was coming to talk to us. The surgeon had seen Owen in the early morning and thought it might be best to place the cardiac shunt. This is considered 'open heart surgery' and will not be the only one if they do it. But it may be the only one for a few months. We were informed that he is on the surgery schedule for first thing Monday morning at 0630. The procedure was gone over with us, and the consent was signed. There will be a discussion tomorrow with the cardiologist about maybe holding off on surgery a wait a few more days to see if Owen's pulmonary vascular resistance decreases. We will know for sure tomorrow and this is the medical world so things can change and surgeries can be pushed back so nothing is set in stone. I will keep you posted with tomorrows blog. Other than that we had a lot of cuddling with the "Moose" today and can't wait for more tomorrow. Chels has been able to take advantage of their breastfeeding mom trays, but we went out for some comfort junk food today. We had cookies and cream ice cream and a macaroon in Gramps's honor. Chelsea finished this sweet snack with a carb coma nap on the table!

-Chris

"O" is for oxygen.

Today was a rough day. Everyday is up and down and some are good some are not. We started the morning off with the cardiologist talking to us about how Owen is not progressing as good as they had hoped. The MD stated that the possibility of surgery is back on the table and we will see how the weekend goes and he might need a shunt placed to help with blood flow. They are going to wait and re-evaluate on Monday or Tuesday of next week. After that the morning was good. Papa Schlitz came by today to see Owen as well as Aunt Court and Robert. It was nice to see them. We went and had a quick lunch and when we returned Owen had to have another IV. This poor kid has had 6 by now with a total of about 20 misses. He needs to have IV access just in case but it is still hard to see. He was able to get a blood transfusion today and I was a great match for him so he received my blood that I donated a few days ago. As the day progressed his oxygen saturation continued to drop and he had an episode that went into the 40s and ther for a few mins. It took him at least 30 minutes to get back up to the low 60's. MDs were called, RT at bedside and Owen was put on high flow oxygen and recovered but it took awhile. This has not happened before so this was something new for Chelsea and I to see. At times I wish did not have medical experience. Chelsea and I have said how it is nice because we are at least comfortable in hospitals, but it is a challenge when it is your loved one, let alone your new baby. He recovered well and did better after that. That was today, so we hope for a better tomorrow. The days are starting to become a blur, it seems like one really long day. Owen is 2 weeks old today it has already gone by fast. We headed to Rich's tonight after meeting the night shift RN. Got there around 9. We ate dinner and homemade ice cream. We hope for a better day tomorrow and each day there after for baby O. We thank you for the support, prayers, positivity, and love sent our way.

-Chris

Visitors

Aunt Wynt loving on Baby O.

Another good day. Owen did well today. The team down here has been tweaking his O2 and N O. They were able to decrease his O2 down to 2 L via NC now but they had to bump his N O up to 20 again but he was able to tolerate well. He always does better of course when mom and I are holding him, and also great when Wynter with Grandma are around. Grandma Schledewitz and Aunt Wynter drove all the way down to SF to see little O. No word on what the plan is at this time. The MD's round really early before we get there so sometimes it's hard to get a full story. Owen was back to working on the breast feeding with mom today he had a break over the past 2 days as we let things calm down but its like riding a bike for him and was doing great again. Chelsea and I were able to sleep great last night in a good comfy bed. It makes things a lot easier when you have some sleep under your belt. The weather here is foggy and a nice change from the heat. We are happy to have little to blog about today and hope for more uneventful days...Although we wouldn't mind an eventful day of a transfer back up to Roseville!

Robots???

Today was a good day. No major changes today. Owen has been doing good. They have begun to decrease his N O today. He had saturations in the 80's for some part of the day- But still likes to live in the 70's for now. The cardio team has been telling us that we just need to be patient and let things run their course. That is easier said than done as a parent. He has been calm and not giving his nurses too hard of a time except for when he wants to eat. He still turns blue when he cries but does well overall. There are rumurs of us being sent back up there to Roseville once he has a little better saturations.

I have worked in a hospital for about 7 years now and have been to a lot of other hospitals through out the years but this was a first for me. Today I was getting in a elevator when this cart (push cart) with a siren light on top started talking to me and asking me to move out of the way. It caught me off guard and thought that the no sleep was catching up to me but it started coming at me. "Please move I am exiting the elevator". So I moved and this robot cart was on its way. Weird. No more Carl Hotel tonight it was a dive by the way. We are able to stay at at Chelsea's college friend who lives about 3 miles away. Thank you Jamie and Eric for the hospitality and yummy dinner. Not much to report today. For all the blog stalkers out there to make it easier I will only post around or after 9:00 pm for the most part. Thank you for all the support.

-Chris

I heart SF!

I look like a burglar trying to steal milk!

Loves his mom.

You can see my real head!!!

This is Owen's little transport rig that he was able to ride in coming to SF. He the little orange thing on the inside.

Well after last night I think we have everyone on their toes waiting for the next installment of Owens world. From the last post Owen had a hard day yesterday with decreased oxygen saturation's which was making the staff at Roseville a little nervous. He continued on oxygen and viagra. They started him yesterday on another drug called nitric oxide that he breathes through his nasal cannula. N O helps dilate only the the vessels in the lungs and is said to help with the pulmonary pressures that the little guy has been having. He did not have great results with it. His cardiologist had sent some images to UCSF with concern to Owens pulmonary veins. UCSF saw this and with the symptoms that Owen was having yesterday they thought it would be appropriate for Owen to be transferred down to UCSF. Chelsea and I had already left the hospital and just made it home when we got the call that Owen was going to SF. It was good that we were at home so we did a lot of packing and last minute clean up. We both think we over packed but we have no idea how long we are going to be here. We loaded everything up including Blue the dog and were on our way. Blue is at her cousin Kahlua's house for now and has been doing fine. Wynt reports some goofy behavior like sprintng around the yard, following people into the bathroom, and hanging out in Wynt's walk in closet all day. These behaviors do not shock us- she's a weirdo. We were able to make it to the hospital on time to see O before he left. There was a change in how he was going to get here. UCSF said that they wanted to come and get him and were going to fly him here. Yes, day 11 first plane flight with a MD, RN, and RT. He was in very good hands for the flight here. He did well and arrived at UCSF at about 4 in the morning as we did too. We were able to set up a hotel before leaving to come down here so it was nice to be in bed around 5, it was a long day with everything. We were able to get a few hrs of sleep before the trolley cars started running and I mean the large ones. Remember those commercials where the train or subway goes by and the whole room starts shaking?? that's what happened at about 0700.(this is why we live in the country) We were able to find our little man this morning in the Cardiac ICU and he looked very rested and calm wondering where we had been. He had another repeat echo today and they were able to see that his veins looked good and there will probably not be anything that needs to be fixed. The cardio team also said that Owen has a very mild case of Ebsteins which was great to here as well. The plan will continue that they will stop the viagra for now and continue him on the N O and try to wean him off that as his sats come up when the pulmonary pressure decreases. He has been doing good, in other good news they removed his scalp IV so its been good to see his normal head. Some other things they are going to try is to give him a blood transfusion that they said will help, so they are letting me donate the blood to be given to him. Word for the wise, when you donate blood do it on a day when you have slept for more than 2 hrs and have eaten some food. I did not pass out because I would never live that down but it was an interesting walk back to the hotel. Today, all and all was a good day. The staff here is good, Chelsea and I are good. We had to take a Hotel room tonight that has 2 twin beds because this is all they had. (kinda funny, feel like I am 10 again) Thank you for all the well wishes we will let you all know when we know more.

-Chris