Owen Update

Hi all,

I told myself I would be in bed at 9:30 but I am rescheduling that to 10pm...So better type fast!

We have been doing well. I have had a few goof ups lately, 2 to be exact. I pulled Owen's tube out one early morning when grabbing him out of the box bed to nurse him. It must have gotten caught on the blankets or something...and came almost all the way out. Since it was probably dangling in his throat we just pulled it out. Chris wasn't happy about having to reinsert the tube at 5 in the am. He really isn't a morning guy if you know him even the slightest bit you know that!

This picture was taken also right after the tube was out. I always feel the need to take photos of Owen with his tube out but of course he was sleepy. Me snapping 15 photos probably didn't help Chris's mood...

After a busy week and weekend of hanging with friends and family we decided to impose the first Britton family pajama day...THE BEST IDEA EVER! It is like a sabbath- we will observe it again but probably not weekly. We did stay in pajamas all day long, relaxed, went to the garden, and otherwise didn't leave the house. We just had good quality family time. I ended up goofing things up again. If you haven't seen us at feeding time, we are still having some issues breastfeeding. Sometimes O will nurse for 10 minutes, and othertimes for 2. Sometimes he won't nurse at all, even if he is hungry. His circulation, inconsistency with initial nutrition, and elevated respiratory rate all contribute to this issue. So I tend to do whatever I can to make this time longer. I will hold weird poses if he is latched. I will continuously move around if that is what he likes. I will do lunges if that is what he likes. I will do anything for this kid! So around lunchtime on pajama day I was changing positions during breastfeeding and I went to stand up from the couch and I stepped on the port of Owen's tube and yanked that puppy clean out faster than flies come in the screen door... Talk about a bad momma moment...hour...day... He did appear to be mad but that subsided quickly... Chris was understanding but offered some good advise that I need to chill out and be okay if his feeds vary. We may just need to coil it up and tape it to his clothing somehow. That is getting ridiculous....

We had a great appointment at the cardiologist on Monday. I will likely not explain this correctly but in a nutshell Owen may possibly not need another OHS this year. At 6-7months of age (or later if he is doing well!!) We will likely go down to UCSF and they will cath him and see if closing off his shunt affects his O2 sats. If his sats stay normal/acceptable (around 85%) then they will remove the shunt and he may not need further intervention. This was news to me because I thought that the Glenn was the next move. But because of O's interesting anomolous pulmonary veins the Glenn wouldn't help him. We thought that he may be treated at a single ventricle kiddo but Dr Rivera (aka "the riv") thinks that at worst Owen would be a 1.5 ventricle kid! Hard not to get too excited, and being cathed at such a young age also carries risk.

Anyway, had another fun day preserving tomatoes with Tracy. Had to can because this momma is out of freezer space. Will sign off. Hope to blog very soon about our garden investment, output, and the cost savings...I have kept detailed records of the harvest. I am so interested to see what the total outcomes are-I know the tomatoes are in the 400's+!!

Love and Hugs to all,

Chels

Been a while!

So a girlfriend sent me a message yesterday...Blog update please! Had no idea it had been a week or that people were still checking regularly (yay!). I don't know what was going on with my blogger account but I was unable to view updates on baby Paxton. I have been able to now, and he is doing well after his procedure. He not only had the Glenn procedure but the cone procedure as well that is reconstruction of the tricuspid valve using his own tissue. We have researched this procedure and very few surgeons do it... So glad he is doing well and it may be his last surgery at least for a while!! Okay, a random transition now to what we have been up to!! I have harvested over 400 roma tomatoes this season. I sliced and froze these for pizzas. For the tomato sauce everything was from the garden except the garlic and onions...I planted garlic yesterday! I like to use anything we have...grated zucchini, pureed carrots, chopped kale...Hopefully I can make 100% garden tomato sauce next year.
This was one harvest of 23# of tomatoes.
Thank goodness for freezer space! We actually are out of that though! Between all of my breastmilk, garden preserving, and recently purchasing some grass fed beef, we have 2 regular sized freezers full as well as the deep freeze. This is actually a good thing--as soon as people start getting sick, Owen and I will be keeping it real on the home front. That is why we are doing a little big of gallivanting these days.
Chris traded shifts and ended up doing 4 12 hour days in a row....He said he would have slept in the parking lot if he had a camper shell. I found him sleeping in the den in a sleeping bag! Owen and I had lots of time for dress up. This was facilitated by the fact that he likes to go through many outfits/day. He picked out this tractor outfit...hoping to get a tractor ride in the spring!
He was just cuddled up supervising me folding laundry. He is particular! "Sharper corners, Mom!"
Aunt Kim came over and hung out with Owen. She hadn't seen him since the day of our voyage home with Owen from UCSF (8/30). She picked up a prescription for Owen since we were trying to leave the city ASAP! Good times were had!
Owen and I got out to that Jahangiri's. We enjoyed a fantastic lunch- chicken and spinach mmmmmm. Owen got to meet Michael and hopes to meet Aiden at the next visit. Sayna and family were very avid blog followers and supporters.

Blue finally went to the groomers and got a nice bath and trim. She also got a dorky ponytail that we took out after a few silly pics. We are thinking of contacting Cesar Milan (aka the dog whisperer) as Blue has regressed since Arthur has passed. Chris thinks that she needs an alpha dog. She does not want to go outside...we have to life or drag her outside almost every time... She is 70 pounds and with those cement feet is isn't the easiest task...It is kinda weird. She does love Owen, and follows us from room to room. Also if we have visitors she will get in between Owen and the visitor in a sweet yet protective way.

Fall days?!

Grandma, O and I at Apple Hill. Lots of good times, eats, and laughs.Enjoying the fall weather...NOT! I wanted to get the apple hill fall feeling but it was ~80degrees. Owen was a doll and just relaxed in the stroller. Not my smartest plan to go on a sunday, but we knew what to expect... It helped that grandma and I had a strict mission- arrive at 11, purchase lunch (to beat the crowds), purchase frozen pie, take to car, do a lap around crafts, enjoy lunch under the trees, hit up the fudge factory, take a few festive photos, and we were in the car getting Owen ready for his next feed by 1245. It was most enjoyable and I had the cover over the stroller most of the time but Owen was happy as can be.
Owen is holding his head up very well these days with the prop of the boppy pillow. When he is totally flat he doesn't know what to do with his arms so he just lies there on his tummy and can move his head side to side but not up. The nasogastric tube doesn't help rubbing flat on his face either.
Owen finally got to meet Elise! She had a stuffy nose at another time when they were going to meet up before. It was a great day for the girls to come up. Uncle Chris took them on a nature walk and Wynt and I hung out with Owen. Note Elise's upside-down crown. What a big girl!!
Chris wanted to go jogging the other day so I pounced on that idea! Lotus is so gorgeous and it is the best through the week. We debated...to take Blue or not to take Blue...but we did and she did well. I had a theory that she would bow-out before Chris and I was right. So they went to the river and she swam while Owen and I did another few laps.
We are LOVING every single MINUTE of being HOME!!! Owen's weight today was up to 10# 10 ounces for all of you counting his ounces along with us. His growth since the first week after being home has been fairly normal, but he is still catching up. I am measuring his head circumference and everything and that grew 1/2 inch in a week. What a brainiac!! I am cheating right now and feeding him without waking him up. I haven't done that yet, but his schedule recently has been a little off where he doesn't feed right before he is ready for bed. So he's getting his full volume via nasogastric tube while dreaming...

Many thanks to the continued support of our love (Owen). I keep checking in on Paxton (the other little boy who had surgery planned for 10/6) but the blog has not been updated. Him and his parents continue to be in our thoughts daily.

Please send your light, love, prayers, and thoughts

Morning all! Owen just woke up for his am meal, had a good breastfeeding session and is back asleep getting his feed in bed. I just gave him his aspirin, lasix, spirulactone, and zantac, and am getting ready to pump. I just couldn't stop thinking about another little boy named Paxton.

Dave found his blog by searching on blogger. He was born earlier this year, and also has Ebsteins anomaly, and another syndrome which affects his eating habits as well. We have been following their blog and Paxton's status this whole year. Paxton also had the BT shunt placed like Owen, and also gets his momma's milk through a feeding tube. His more complex feeding issues require further therapy. (As Owen's are related to his fast breathing aka tachypnea).

Today Paxton is having his shunt removed and is getting the Glenn procedure done. Please keep him in your thoughts, he is about 8 months old now. Also send his parents Susie and Scott, and the care team your strength today. Susie has given me a lot of inspiration, as she is still pumping, doing his feeds, working, and running her household as her husband is gone frequently for work/school (I can't figure that one out...) Susie is a veterinarian and also a dog lover like us!

So on this day, please be grateful for your health, eat well, be glad for your functioning body, and enjoy the ease you have of your breath--it doesn't come easy for these little warriors. They are strong but it is not an easy road.

GO TEAM PAXTON!!

A day in my life

Mom couldn't find me the other day and she came into my room freaking out. I was just trying on some clothes and reading--no big deal.What do I do all day??? Here is an idea...

0030 wake up with gas and hunger. If calm, mom will weigh me to estimate how much breastmilk I eat. I breastfeed for 5-10minutes, weigh again, get changed, go back to bed easily and receive fortified breastmilk while sleeping.

0400 I wake up with gas and or hunger. I breastfeed for 5-10 minutes, get changed, smile at parents, go back to bed easily and receive fortified breastmilk while sleeping.

0700 same as above

1000 same as above but we move out to the living room and receive fortified breastmilk in bouncy chair, swing, or parent's arms. I usually fall back asleep about halfway through this feeding session for another cat nap.

1200 Happy time. I play with my toys, silently laugh at my parents, make gaa noises, and enjoy sucking on my hands

1300 meal ritual with catnap

1430 tummy time which can lead to catnap and parents flipping me over like a pancake...Why are they so paranoid?

1500 If mom is on her own and the day is not scorching hot we will go on a walk. She loads me up into the carrier and I will sleep as she walks for 30-60minutes around the neighborhood. We collect eggs, pick waist high veggies (she says it's hard to bend over with me on the front of her), and she goes up the driveway multiple times to get an even better workout. She tells me about all of this because I am sound asleep.

1600 meal ritual no catnap

1700 happy time/tummy time/awake time/I like to stare at my mobile and watch the animals go around. Mom and dad hope the classical music makes me smarter but I really like james taylor better.

1900 meal ritual

2000 possible bathtime. Bathtime is getting some re-vamping as I have had 2 pale weird episodes now. Mom and dad have learned that when I am mad DO NOT make me even more mad. DUH! Bath is not my favorite time because I still have to have sponge baths until my incision is completely healed over. It just doesn't feel so good...So I cry. Then my feeding tube needs to be re-taped almost every 2 days now and they thought the best time to do it was when I was already PO'ed...WRONG. So now I get a bath whenever I am happy and they change the tape at a different time when I least expect it. They are getting really fast at doing this together so that makes it less stressful.

2145 usually I fall asleep in my box bed between mom and dad about this time, regardless of when I am put in bed. If I am put in bed earlier, sometimes I will just relax and suck on my paci and think of how great this life I have is. Sometimes I will play a game on my parents and spit out the paci multiple times. When mom is on her own, I have been known to spit it out 8 times (why does she count?) They think they are so sneaky with the video cam monitor...it does make this game more fun because I look at the camera sometimes and make them laugh.

That is pretty much a home day in my life. I love my hands these days and even found my thumb yesterday. Dad makes me laugh sooo much when he says funny things like poo-poo. Mom tries to make me smile with all kinds of weird noises and songs, it works most of the time. I can hold my head up really well now which also is an adjustment for mom and dad. I'm still working on holding it up when I am laying on my tummy...I am going to be a little behind because I was on that breathing machine for 3 weeks...

There is also this large black hairy creature who always tries to lick me. Mom and Dad call it Blue but I'm just learning my colors and stuff, but I'm pretty sure it's black.

Oh yeah, I am gaining weight slowly but surely. These parents are pumping me up with calories. Sometimes they add fat to my feeds but it gives me gas. I think they have found a good balance, and when they don't give me enough I demand more. When they give me too much I vomit, but for the most part I keep it down and enjoy eating much more now. I have only had 2 bottles in 2 weeks with Dad so mom could go out into the world without me. She loves me so much but she also wants the boys to have some time together. We enjoy watching football and laughing.

Hope you are all well, I have been meeting more of you as we have been home longer. I'm not sure if my parents are going to have a welcome home party. They love to entertain but this may be quite the party--guess I'm pretty popular. Should maybe wait until I have some vaccinations... this week I think! Yikes..

Love and wet kisses from Owen

(information sent from Owen to Chels via child-mom telepathy)

Time flies

(picture was taken in the ER when we knew he was better). Couldn't get a smile.. But the tube was temporarily out!

Well I really thought I had blogged since the Yikes one...Time flies and I must have blogged in my brain during a walk or something... We are doing well. For the last 5 days Owen has been nursing almost every feed for 5-10minutes, and we follow up with high calorie breast milk depending on how much he takes from me. If possible I weigh him prior to and after each breastfeeding session. It has been working out well-he is soooo much happier, calm, and hopefully the scale will also show it works! His pre-lasix weight today was 10# so he is likely very close! I had always offered O breast but he wouldn't consistently take it. Just recently he did! I am still pumping because I have wanted to keep my supply going when* he was able to nurse completely. (*not sure if that will even happen). But I am scaling back a little bit to match his need a little (and the deep freezer is filling up.

I am adjusting to my role here-Chris had his stretch of days and we made it thru. I have found that I have a better day when I do more than just laundry/house stuff. I had a cooking extravaganza one day during 2 of Owen's cat naps. I made a plum tart, 2 lasagnas for friends, 2 taco casseroles, zucchini soup, granola, and tomato sauce for the lasagna. The kitchen looked like a tornado had passed thru, but although tired I felt this was a very therapeutic and fun way to spend my morning. Plus I know you are supposed to "sleep when the baby sleeps" but I just couldn't... It was a nice day and I plan on having home tasks like that when I am not planning on doing any errands. I have a few hobbies so it shouldn't be to tough to find other things to do:).

A friend asked me what was next for Owen...He will need another surgery in the next 3-9 months depending on his weight gain, as he hasn't grown into the shunt yet. As he grows, he will also outgrow it. He also needs his pulmonary veins corrected...MD's are discussing the Glenn procedure. It is usually the second stage of 3 stages of heart surgery in single ventricle patients. If Owen's heart grows well and the Ebsteins does not worsen, hopefully they can get away with only one more childhood surgery. But if he continues to be seen as a single ventricle patient then he will like need the Glenn and the Fontan procedure after that. These surgeries are like bandaids to help the kids grow and be home and have better outcomes in the long run. Our cardiologist (whom we LOVE) also said that if Owen doesn't ditch the ng prior to the Glenn procedure that he will get a PEG. (feeding tube in the stomach). Just like now, it doesn't mean he can't take foods by mouth, but it may be a supplement type of thing. That is all down the road...

Gotta go check his feeding pump!

-Chels

Yikes

Well I must type fast (as all posts these days!)

We had a not so good day yesterday in addition to my news. I went on a big outing by myself to the grocery store but couldn't leave because my prius's battery had died...While Chris charged it I took his truck around town.

We were getting Owen ready for his night feed after bath and needed to re-tape his ng tube to his face as it lifts every few days and he likes to grab it! This is no fun for any party involved. Owen started the bath and ng routine with about an hour of crying/fussiness which is pretty normal. After we replaced it Owen had a gag and a nasty mucus spit up (which he has been doing recently...usually during/after a feed). He then turned pale as a sheet and was lethargic and not acting normal. From being fussy to nothing at all and pale as a ghost we knew we needed to get outta here and get him checked out. Poor boy. We loaded up the car and Chris flew down the hill. If either of us were by ourselves we decided we would have gone to Marshall, but we went to Roseville. Chris called them and gave his buds a heads up that we were on our way in. Not the best way for Owen to meet all of his fans! By the time we got there (and with 30minutes of sleep under his belt) Owen's color did look much better. We didn't want to overreact, but with his history we didn't want to write it off. Chris replaced the ng tube, and off we went for a chest xray to rule out aspiration. The tube was in the right spot, and the xray looked a little more congested than his last one (due to overcirculating d/t his shunt being too big for his body size). As long as he doesn't get a fever he likely didn't aspirate. So we got home late, Owen finally got his dinner 4 hours late, and then he slept for 5 hours!! Wahooo! But we have to make up for those calories somehow!

I went down the hill today for the weight check and Owen is up to 9# 11 ounces. Our scale is the same so that is good. Busy errands and let me tell you I couldn't do them fast enough because it was time to get back and feed the boy. It has been a better day but we have to work on those nasty spit ups. They can lead to him losing a decent portion of his feeds. Our cardiologist suggested saline and a bulb syringe prior to feeds for a while. This worked great for the first one today and then I forgot to do it at the last one and he spewed after gagging... GEEZ!

He is a happy camper though and played happily in his crib for 45 minutes! Crazy! I kept thinking he was asleep and checking on him because the monitor was quiet but he was watching his mobile. What a sweet heart.

Please keep his mealtimes in your thoughts-it is challenging for us all.

Love and wet kisses from Owen.

-Chels