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

Bittersweet

I first titled this summer of bummer but that was just too "poor me". Bittersweet is a little better.

Ok, for starters, we are sooooooooooo lucky for sooooooooo many things. I received some shocking news today. I was laid off. I was expecting my boss to inquire about when I was coming back but instead was told my position was eliminated. We are so lucky that we weren't reliant on my benefits for us/Owen, as well as my income being the sole income. I am very sad and frustrated as I have working for Mercy for over 5 years. I feel that this was out of my manager's control, however that doesn't make this any easier. I'm over the ego part, but I am sad about the way that this has ended. I won't get to go and brag about Owen to my co-workers or let people know what really happened...It's like I left on maternity leave and poof..gone! That sense of finality is non-existant. I have worked so hard to have good relationships with the MD's, RN's, and staff, and that takes time to establish.

I know that everything happens for a reason, and that I wasn't wanting to rush back to work anyway. I am so glad to have this "extra" time with Owen, and we will get into all sorts of trouble together. This has to be a blessing in disguise--guess I don't have to worry about having holidays off this year :).

My boss did mention that if/when I was ready to go back to work that a supplemental position could become available for me....I did that for 2 years already and that would possibly work out well with Chris's schedule...But who knows. I feel like I have paid some dues already and starting over again would be a step in the opposite direction. I kept saying that "I just got started" with working, and looks like I will have to get started again...This also isn't the time in the economy to be choosy.

Anyway, just rambling a bit about this... it really is bittersweet.

An Owen update- he has been gaining about an ounce/day and Chris and I are gearing up to replace his ng tube one of these days...May plan a mini photoshoot around it to get some more tube-less pics. Feeds continue to be inconsistent. He takes up to 20 minutes of breastfeeding, up to 55ml of bottle time, or 10 mls and a scrunchy nose at my breast. He is all over the place, and we are keeping a detailed log about what is best. We are still learning but hope that his weight gain will bring his respiratory rate down sooner than later. He is grumpy about drinking the fortified breastmilk now and seems to get more tummy aches from it in the ng tube. He is smiling more and more each day and getting better at "playtime", was happy and awake for about 45 minutes yesterday playing in his crib on his own!

Over the weekend Papa Rich came up from SF and the Papa and Nana Britton were up from AZ. It was nice to have all the grandparents around. He also got to meet Great Granny and Lois.

Chris started back to work last week and thank goodness he just went for 2 days. It was nice for us to see how it was going to work. It went well and he gave me friday night "off" and I went down to Folsom to go to a Zumba class with Wynt. We have been working as such a team in all this, us each providing about 50% of Owen's care. So it was an adventure for me to do 90% of it for 48+hours! I'm gearing up for him going back for 2 12's, one off, and then 2 more. That will be a challenge for me but I'm looking forward to going on some adventures with Owen. I have already clipped his tube feeding bag to the stroller, and the mirror in the car. We can't let those hour long feedings stop us or slow us down too much!

Just when you start to get comfortable in life things change...Signing off as a stay at home momma! Gotta love it--look at that smile and chubbier cheeks! Work will always be around, but this time with O is limited!

We did it!!

We have had a great couple of days! Owen gained 6 ounces in 6 days! Yay! That is right on track for a non-cardiac kid! Hopefully this spurt continues! We now have a scale here that we can monitor him closely as well as weekly weight checks at the MD. Featured below is Owen at the river! We made it! The other morning Owen and I ventured out on a trek all the way to Lotus park! He was so happy to be there he was awake but happy during the whole jog! (Although his eyes are closed in the pic- it was pretty bright!) It was the best feeling to finally feel like we were where we were supposed to be!! Ok must go, this whole "afternoon quiet time" in the crib isn't so quiet. I just decided to give it a try for 10 minutes or so but poor boy has him some hiccups! Must go! Yay Owen!

My First attempt

Ok so I think I have figured out where to find pictures that I have recently uploaded...Just some minor technical difficulties but hopefully they are figured out now. I have promised pictures of our chicken crew...Here is Pat the rooster and his laying ladies.
Peeking at the door when I opened it!
Laying in the roost. I had a double yolked egg today... TWINS!
This is the picture that goes with todays post which is actually about yesterday (9/11). Ya follow? Ok. So I haven't really been going many places these days. We have had about 2 MD's appointments weekly and Chris drives us and I hang in the back with O. Since Chris is going back to work this week (eek!) I decided it was time to get brave and go out on my own. My big plan was to go jogging at Lotus Park which is really only minutes from here. I fed myself, fed O, got the Bob in the car, diaper bag, etc. Ready to go! I even let O's stomach sit for about 30 minutes before loading him up into his carseat. I snap him into his carseat and he coughs...Uh oh...this has been the precursor for some vomit in the past...that ng irritates his throat and sometimes all he needs is a little cough...yep, you guessed it. Luckily I had a burp cloth right there and caught most of it...but not the part that went on his jammies and carseat.. If we really NEEDED to go, then I would have done the quick change of jammies and put him down on a towel or something in his seat. So our "jogging in jams" didn't happen. I changed him, put him in the snugly (baby bjorn thing) and we went on an hour walk around our neighborhood. It was a nice morning and he slept the whole time. So that was the extent of our adventures for now. Maybe in the next few days we will try it again. The pic above is of him tucked in asleep in the carrier.

I was able to go get a massage today (birthday present!) with my mom and sisters. It was special for sure, and not every day that we can all get together. I can't quite keep up with our visitors on the blog, but aunt Court, Jac and Colin came back by (engaged!! wahoo!!), Jay and kiddos, Brittany and Sol, and Margaux and Jake in the last few days.

Chris and I are gearing up for him going back to work and also really trying to get this kid's feedings down. We are infusing his high calorie milk over a longer period of time and it seems to have helped. He stopped taking as much higher calorie in the bottle so we went down on that a little so he can enjoy it more. Doesn't make for a flexible schedule but as long as we are home it has been working. He has been regulating his own schedule which has lead to a happier household. He sleeps well at night- going up to 4.5hours. It has made a difference these last 2 days. Will keep this going, even if I write it in shifts (started in the am and finished at night!)

Love to you all!

SMILE!

Oh I forgot, Owen has started to smile!Looks like Dad in this pic!
He is a little hit or miss but smiling more each day. (not when he's passing gas either, guys, come on!)

Good days

Ok, so when I got back into blogging before O was born I was starting with our land photos, and the progress on the garden. And then he came! Here are some updated pics from this season.From left to right: corn, zucchinis, melons, basil, weeds!
Left to right: kale, cosmos, starting romas.
Soybeans
Corn with house in distant view.
These cosmos are now 7 feet tall!!

Chicken pictures to follow sometime soon!

Well I am a little behind in blogging, funny how we had extra time in the hospital and time has a complete new meaning. For the first few days home Chris and I agreed that we worked for an hour and then had a 2 hour break! (When O was sleeping). After getting in a groove and enjoying the every 3 hour schedule like clockwork, and not having any weight gain, we decided to let O decide when he was ready to chow (but not letting him exceed 4 hours). We started that 2 days ago and it has been going well. He did go one stretch of about 3.5 hours but has made up for it thru the day with a 2.5 hour one but really is just on his own schedule. It feels good to let him do that instead of waking him up.

We have been so fortunate for all of his care. Our cardiologist called us tuesday to check in after we saw him on friday, as well as the NP at UCSF has called us once and personally emailed me. It is so kind, I know how busy she is down there at UCSF, and she even reassured me after we kinda haggled her about discharging us. SUCH good follow up.
Here is O hanging with Great Aunt Lori.
O smiling while cuddling with Aunt Jac.
Ok, so this isn't our garden, but it is Aunt Tracy's garden in Cool. We went there at least once a week last summer and hadn't made it yet until the other day. Owen blended right in, a true future farmer (like he has a choice!)
Daddy O and relaxed O.
A beautiful sunny flower. Tracy gave me one that had fallen for seeds to roast and seeds to plant for next year!

Owen has been doing well. I think I already blogged it but we are adding more organic formula to my breastmilk to up the calories to make up for his increased nutrition needs. Hopefully that does the trick. I am eating butter and ice cream to fatten up my milk just kidding but maybe that part of the problem, no one knows exactly how much nutrition is in my milk itself. Hopefully this works, he has done well with it last night and today. Aunt Jac came to say bye before she leaves for Haiti on Saturday to go be a professional cuddler at an orphanage and also use her MA skills at a clinic. Aunt Court came by an was a professional cuddler with O today. We relaxed and Owen had some naked time out on the deck today under an umbrella. He loves being naked, and the fresh air also.

Chris was gone for most of the day doing errands and stopping by his work. We had a big THANK YOU to deliver to all of our extended Kaiser family. What a crazy blog, here there and everywhere. That's what you get for not blogging every day. Anyway, hope you are all doing well and wish me luck...Chris is going back to work next week! I will fend for myself- meds, diapers, and NG oh my!

Love, Chels