Tubeless

Here is the new port. It is not as bad as it looks but we can not give him a submersion bath so he has the antiseptic cleaner that is giving him a rash and cries when we try to scrub it. He has a bandaid over his belly button where they made a small incision.
This is how he looks with nothing on his handsome little face.

It was a long week for us all but even longer for Owen. It all started out on Monday of last week when Owen had to get an echo and EKG, 2 MD appointments, labs. He had an appointment with Dr. Rivera his cardiologist for the echo and EKG. The Echo was great. I always worry that when we get an Echo something will not be working right or there is a new problem. But his echo looked great and showed some promise of a better functioning right ventricle which Rivera was optimistic that Owen may not need another open heart but only time will tell. We will know more as he and his heart grow. We also had to get labs dawn that day and meet with anesthesia for a pre-op consult considering Owen is not your straight-forward patient.

The week went on from there and Owen had not been his normal happy self. Usually at group therapy he is the loud kid, crawling around, and having a great old time. This time (Chelsea's bday) he was Mr. Clingy. He is NOT like that... His OT appointment at home was cut short because he wasn't participating. We were nervous he was getting sick, he had had a fun weekend with lots of kids around, but we found that he was getting his top molars... awesome...more teeth... Actually slept ok for 2 nights then horribly after that...On Friday morning the day of surgery started early. We had to be at the hospital at 0600 and surgery was scheduled for 0745. That meant waking at 430, leaving at 515. We were both up with Owen that night, he was awake from 1-315 and ended up just falling asleep on me until 430 when Chels came in and woke us up in the recliner. Poor guy wants to snuggle but will wake up more if we bring him out of his room...Pre-op was all good with no problems so they did not start his IV until they had him in the OR and sedated. Owen is a little harder than your usual IV start related to having a lot of collateral flow due to his body creating different flow because of his low oxygen in the blood system. Some people may not understand what Owen needed in surgery. So, Owen still is not eating but is getting better with therapy. His eating is not going to get better with the tube going down his nose, irritating his throat, so they surgically placed one in his stomach that goes through the skin to his lower abdomen. Owen now has a port that is located next to his belly button that goes straight to his stomach. This will be able to be removed in the future but this is what he needs to work on his oral aversion. Surgery only took about 1 hour and the surgeon came and talked to us everything went well and as expected. We later were able to see Owen after they transferred him the PICU with out telling us and we were waiting in the OR waiting room and asked when can we come see our son. They a stated "He went to his room about 45 mins ago." That did not sit well with us so I will follow up with that later. When we found him he was crying in his room with his nurse. He was fine once we got there and were amazed that his oxygen saturations were 85-95% and we have never seen them this high we were impressed/amazed. They stayed there throught the whole stay. They have never been this high so we felt some relief for once. The nursing staff in the PICU was great at Kaiser Roseville--all of their care for Owen and us was nice to have. We were able to be discharged home early the next day because Owen was doing so well.

It was nice to be able to go home and not have a long stay in the hospital. On the way home the Maine family invited us over for lunch and Owens BFF Evan bought him a lion to go with his safari themed room. Chelsea and I had our 10 year high school last night and it was located very close to home. We split it and Chelsea wen for the first 2 hrs and I went for the last 2 hours. Facebook has kept most of us all in touch and everyone knows of Owen and his journey through the blog. It was nice to see old friends and re-connect, even for just a short time. All is well with Owen. He slept okay, but he's still sore in the abd from the surgery and has a rash on his chest from a cleaning product that they used prior to surgery. It brings a smile to our face to see his full smile with out anything on his face. He is acting normal I am currently watching a hilarious wrestling match. Owen is into pushing buttons and has figured out how to turn on the roomba. Roomba is a robot vacuum that does a good job but it has the ability to drag Owen and knock him over. The battle is for Owen to turn off the Roomba before it can get the best of him. Who needs physical therapy when you have a vacuum?? We are stoked to be home again, and hope to stay outta the hospital for a loooong time!Thank you all for the continued support and wish us luck with feeding therapy.-Chris

Gastrostomy Tube Placement Tomorrow

I am procrastinating packing my bag for the hospital... Owen is scheduled for his gtube surgery at 745 tomorrow, with an arrival time of 6am at the hospital. This means a wake up of.... 430...YUCK! Should be illegal... Reminds me of when I used to work the first shift at Mercy. His ECHO, EKG, and labs were all great this week. Pretty cool for a breast pumping/random food mixing mom and dietitian to hear! Owen has had a hard week with Monday starting out with all the appointments and being awake for 3 hours that night. He has been clingy, whiny, and tired. He usually is none of those things... Poor guy...We have later found that he is getting his last 2 molars at the same time. He now has 13 or 14 teeth. It is getting ridiculous. The good thing is that he actually has been sleeping better the last 2 nights, with a stretch of 7 hours both nights. He hasn't done that in a month. For all of you who want (why!!!??) to picture what our nights are like here goes: Owen goes down getting a feed around 8. Wakes up when feed is almost done (around 845 with a gag or cough). Goes back to sleep for an hour. Wakes up. Goes back to sleep. I go to bed around 10 or 1030. The minute my head hits the pillow ( or a few minutes therafter) Owen literally senses it and wakes again. Then he sleeps for another hour or two and wake when Chris's head is in close proximity to his pillow. If it were just a little whine or talk-babble that would be one thing, but this kid wakes with A VENGEANCE! Screaming like no other!! Anyway, I long for when these exhausting nights are a thing of the past, but so far they are still present... Except the last 2 nights, and 2 weeks in July, most of our nights have been like this...Up every 1-2-3 hours... Talk about a sleeping disorder! Okay, I better give into my to-do's... Owen's bag is packed, the laptop and DVD's are packed, and I am the only slacker...Wish us luck tomorrow, and a good night's rest. Thank you all who have contacted us this week/tonight about tomorrow, it means a lot to us. I have seen the procedure done outpatient, in adults, but Owen is going to be intubated, and will stay for at least 2-3days. More soon!

The "Maine Event!"

I have blogged about Owen's best friend Evan before. He is undergoing aggressive treatment for his abdominal tumor. We had an event at our home in honor of the Maine family. It was a party, a live and silent auction, and a good time for all. The Maines were there to party as well! Evan was one of the last to leave, what a little party animal!
Rob was the driver of the borrowed Polaris (thank you Scott!). He was gimping a little, so this was a perfect job for him. Our driveway is a bit steep and a tad precarious after a drink or two, so this was the perfect shuttle down to the pasture to avoid any future gimpings. Ron and Debbie are pictured here. Ron is gloating after he won 2, count 'em 2 baskets that I was bidding on...Oh well, He will put them to good use! When there is a competition I get a little feisty...
This is just half of our yard. I estimated about 80 people at the height of the evening. What an awesome turnout to support a sweet family.
The parking lot, er, pasture.
Evan and Owen hangin
The man behind the event, my awesome husband! He had quite a bit of help from Dee, Randi, Dan, Colleen, Corral, and all of our Kaiser family to boot! We couldn't have done this event without you all. Chris was on it with obtaining donations, organizing the set-up, and coordinating BBQ's... He returned the last one (of 6) today!! Thank you Dan for slaving under the easy up..Nothing easy about manning 6 BBQ's in the sun, on a hot July afternoon...

MAINE FAMILY WE LOVE YOU AND PRAY FOR EVAN's HEALING DAILY!

Aunt Jac's Wedding

As a follow up to my previous blog, I apologize for being so rushed...Owen hasn't been napping regularly so I rushed through it. My evenings when Chris is at work are still under development...Try to not clean or do laundry the whole time, and also attempt to have some "screen free" time:).

Aunt Jac and Uncle Colin were married 7/30/2011. It was BEAUTIFUL! It was so much fun being a part of the wedding, and to see such in love kids tie the knot. Chris was quite the photographer, playing with my early birthday present, a Canon Rebel. It is awesome, even more clear than real life! Ha! I have selected some of the best photos from that night.
Kind of in love, can you feel it?!
I led the shoe game, which I saw played at my good friend Michelle's wedding years ago. It was quite a hit.
This photo is too funny, love Adam's (Chris's best man) expression here, with Jac in the blurry background. Good job, honey.
My Dad and his "wing man" Chris. They had a blast at their table, quite a hit with his some of his cronies from high school.
Way to suit up, Chris! Love the gray, and your hair looks good too! Had to go there... We had so much fun watching two people whom we love, who are CRAZY for each other get married. We were reminiscing about our day for while afterwards. We would do it over again in a heartbeat, and also decided that we were young! Not too young, but WOW, after this year, looking back, we were young! Chris was just freshly 22 and I was still 21. After we had been together 5 years it seemed fitting. I wouldn't change a thing, but I will admit, we feel a little like the old [happily]married couple at times. We both also agreed that we have never been happier in our marriage, and that our relationship has continued to exceed our expectations by far! Sitting pretty if you ask me! Love this man, and he can move on the dance floor too!!
Pre- wedding photo shoot with Aunt Jac aka my younger sister from another mister. Hair done by ladies at Marilyn's Salon in Placerville. She did our hair at my wedding also.
Love this pic, I was trying to get around the real photographer so I can't wait to see her pictures.
Walking down the isle, happy as can be!
The KISS!!! Whoooooooooot!
The happiest groom. Love this photo! Taken walking back down the isle to no other than James--"How Sweet it is!"

Owen UPdate!

Owen is EvERRRYWHERE!! I am holding him for 2 seconds to update our world here... We have a surgery date (whine, wiggle, squirm, try to get the keyboard) for Owen's gastrostomy tube (aka gtube or PEG tube) to be placed... In other words, no tube on his face, and a more permanent, less-conspicuous one will be coming out of his tummy! This is a good thing, very long overdue, but still another surgery. Next week will be a pre-op ECHO and EKG, as well as an appointment with a peds anesthesiologist. Please wish us luck at the ECHO and EKG, we have never had an appointment with him where he has had to stay still for an hour at this activity level. We will have to hold him down, let him watch whatever he wants... too bad we can't bribe him with candy because we would do it!!!

A few updates...

He started crawling early July.

Pulls up on everything, started early August.

Will drink sips of water consistently from an adult sports water bottle.

Has put random foods in his mouth and eaten them... (cheerio, puff, green bean, and...basil... yep! That's my boy!

Ok must go but please keep Owen in your hearts!!

World Breastfeeding Week

How fitting to blog about breastfeeding/pumping this week... If you are already cringing at the title of this blog, then feel free to not read on. It is an homage to the hard work, persistence, and commitment mothers have to give babies the best nutrition around. I have nothing against giving babies formula, but I have lots and lots of props for mothers who choose to breastfeed and or pump instead, or even try it! It is what women's bodies are made to do, and how humans have started out their lives for thousands of years, but it seems like it is not the norm.

Enough politics already... I am here to toot my own horn.... haha!! This is more of a report of my experience this past year plus... This blog may not mean much to you men, but if you are a numbers person, it may...

I started out pumping because Owen was unable to eat because the doctors said so... BOO! The nurses and I would sneak him the colostrum good stuff anyway, because they were giving him sugar water, so we figured that that would be even better. I sunk into an every 3 hour schedule which I did not deter from more than twice in 6 months... I WAS RELIGIOUS! I can't say that it was easy, as I was getting up to pump when my baby was sleeping... Which sounds ridiculous now, looking back, but I wanted to have enough for him!! Thinking back to our feeding routine at this time, I get exhausted...here is how it went down for MONTHS...

1. Weigh Owen

2. Attempt to breast feed.

3. If successful, re-weight to see how much he ate.

4. If unsuccessful, heat water for milk to warm up for bottle.

5. Attempt to bottle feed

6. If breast or bottle unsuccessful, or even if successful, heat up milk to fortify to give through the tube to give him enough, or make up for whatever he didn't eat.

7. Get pump ready and set up for Owen.

8. Get my pump ready and set up.

9. Hook up Owen to feed (30-45minutes)

10. Hook me up to pump (15-20 minutes)

From start to finish the whole fiasco took at least an hour...If he didn't poo or throw up in the process.... WOW! I can't believe we did that for so long.....

This every 3 hour business was pretty serious... If I left the house, I would barge in needing to pump... If I left the house, I would plan my trip around pumping...I would bring it if it were more than 2 hours of a trip. I would need a plug to give it power. I have pumped in some interesting places- bathroom stalls, restaurants, hotel lobbies, toy stores, babys r us, hospital waiting rooms, you name it! After 6 months I transitioned down to 6-7 times a day, and (always hoping) that Owen would eat better after his second surgery. Before his surgery I was thinking I would pump until we were home just in case he would eat better then.... If you remember, he DID eat better, but only for a few days... Then he was back to refusing to take a bottle, spoon, cup, etc...

So when Owen was 9 months I went down to pumping 4 times a day which felt like a vacation! I was pumping about as often as I ate! I felt a big surge of freedom!!! I could play with Owen more, and time it so that he wasn't needing to eat right as I needed to pump... I could time it better with what worked for our family instead of needing to pump after trying to breastfeed him every time. He would just refuse 99% of the time anyway so it wasn't worth the efforts.

Owen didn't start crawling until he was a year old. This made this whole process a lot easier. He wouldn't pivot on his tush either... He would sit and play while getting his feed. That made the whole I pump he pump situation a lot easier. Also, he is our only child. This would have been very difficult had he a brother or a sister. Also, I haven't worked very much. That would have added another challenge to the rigid pumping schedule. I would have continued but my supply possibly would have changed.

So, I haven't pumped in a day. It feels very weird to say that. I returned the hospital grade pump (featured below) the week after Owen's birthday, and switched to a great pump of Wynters. I didn't want to switch when I was in serious pumping mode in case it made a difference...The last two weeks I have just been pumping morning and night and then the last few days when uncomfortable either morning or night. I may be done with the pump after a very long, long relationship.

The very awesome neato frito part of this whole deal is a two-parter: 1. Owen is STILL getting breastmilk in his tube! I am mixing some other stuff in it, but I am still using frozen milk! I had more than enough to get him through his year plus. 2. The only consistent part about Owen's oral intake is that he will always breastfeed. Of course this is only at night, for comfort, but he will open his mouth and receive it! This is HUGE for him, his oral aversions, and has no doubt helped his vocal development. YAY!!!

Ok here is the breakdown, and I had to do the math a few times because I couldn't believe it!!

For 6 months at 8 times per day at 15 minutes per pump, aka 2 hours per day= 15 days straight of pumping

For 3 months at 6 times per day at 20minutes per pump (took longer to get the same volume as time progressed)= 8 days straight of pumping

For 3 months at 4 times per day at 20 minutes per pump=4 days straight of pumping

**Rounded a little on the days straight of pumping***

drumroll....27 days straight... Plus I didn't include the two weeks after Owen turned 1...

Is that crazy or what? That is why I tooted my own horn in this blog... It was a total lifestyle and commitment. I am so glad that I did it, Owen was/is very healthy and he needed my mama milk. I wouldn't have had it any other way, I have said it is part of my religion!

When I cut back to twice a day I was having a hard time with it... Babies are supposed to wean themselves, not mommas weaning themselves... Plus, the alternative to breastmilk is tube feeding formula. I wouldn't want to live on that, and if he was eating, he would have the goods available. I'm tapping into the "owen fund" to purchase a vitamix blender to make him blenderized food. More on that later:).

Ok, have you heard enough on this topic??? I'm almost done...

To all you pumping or breastfeeding mothers, I used the lansinoh plastic storage bags, shoulda bought some stock in them....I also had a deep freezer that was full until about a month ago when Owen was getting 35 ounces daily and I was only making 25....

And....Guess who has "extra" time now???????? Good thing, because this crawler has be hopping!!!!! I was fantasizing what I would be doing with my time when I was pumping, and I am so glad to be chasing after this kid! I would read when we were first home from the hospital, when Owen slept a lot, then I got in the habit of spending waaaay toooo much time on facebook and words with friends, I became an addict to both of them. I am trying to slowly wean off of the facebook too, or scale back, but that has been a challenge also.

Good night, I am going to go straight to bed, and NOT pump! Aw the taste of freedom!!
I spent a lot of time sitting right there, attached to that machine....