Internet down..

Wow I have sat down at the computer many times this last week to do some blogging, email, online banking, you name it...and our internet has been hit or miss... Or like, dare I say... Dial up! Ewww!! So this time I sat down and here blogger is!

Owen has had many appointments each week, usually 3. He is in the process of getting qualified for home occupational and speech therapy. This will be so great for him to have these services in our home. In order to qualify, a baby has to have at least 1/3 deficit in 1 out of 6 developmental areas. The initial assessment summary was that he was delayed in his self care (eating), speech, and gross motor. We will get the full scores next week. None of these were surprises to us, and we also know that he isn't too behind. His social scores I think will be high!!!

Owen had his best ever echo today. I think it was due to Baby einstein being on the entire time, but he was still for 30 minutes. This is a very big feat for any child, let alone with someone pressing on your chest and neck. He never ceases to amaze us. The EKG was also performed in the "movie theater" and it was his best one yet. Didn't even cry until we we were pulling off the last few stickers!

Our cardiologist was pleased with Owen. He decreased his lasix to once daily (down from twice), and said he wouldn't need to see us for another 3 months! He is always accessible to us, but that was so great to hear. He is still hopeful that Owen's right side of his heart will grow normally and could someday function as a 1.5 ventricle kid versus 1 ventricle.

The next step for his feedings...

Our cardiologist is going to work with the GI doctor to get him on board. Via email, the GI doctor basically wrote me that he wasn't comfortable putting a gtube in Owen. This was a big source of frustration for us, knowing how much he has struggled with his feeding. It seems like he will have the nasogastric tube forever... But "the Riv" said he was okay with a ng tube out trial. As groovy as this sounds, I am a little realistic here. It has taken Owen 9months to have a negative association with food, so that doesn't all go away in a day without the tube irritating his throat. But, it is worth a try and we have never been in a situation with his weight to try it. Now that is not an issue! We do need to watch for him getting dry, as that is also hard on his heart. But when sick, "normal" kids don't eat for a day or don't eat much for a day, and we have always been on his regimented schedule for feeds. Wish us luck! Not sure when we are going to do this trial but soon. His tube is due for switching so it will be this week or next. If Owen does need the gtube (very likely) "the Riv" said it will be this summer, probably July or August, and that he would like to be there. So looks like Owen will have his ng tube until he is 1, unless he proves to otherwise be the moose he once was.

Carefree snuggle time

After an appointment with Owen we stopped at a nursery. The nursery was located at an intersection where across the street was one of my favorite bakeries. It is a gluten free/vegan bakery, which my diet is not, but they make darn good eats. So Owen and I did something we usually don't do together...TWO stops out in the world. It is a challenge during his feed to be on the road, let alone unhook him, unload him, re-hook him back up, run the feed, then unhook, and then re-hook and reload him back into the car. Also we have been minimizing his contact with the outside world at much as possible, so he doesn't make many errand runs with either of us. This whole process is made easier by two instrumental pieces of equipment: 1. The plastic claw hair clip 2. The BOB stroller. #1 makes it possible to hang his feeding bag from basically anything, and in our 10 months, we have hung it from light fixtures, dining chairs, jumpers, car seats, and the ever popular BOB stroller. Which brings me to #2. I am a frugal person. I will think and rethink any purchase. Given my passion for exercise and the rants and raves of other BOB stroller owners, we made the purchase of the stroller (at first a little hesitantly, admittedly, due to the cost) from REI before Owen was even here. I have never looked back. It is an amazing creation, and it is a garden cart, mail toter, grocery cart (went grocery shopping with Wynt once after a run with Owen) and egg collector, in addition to concealing Owen as well as providing many areas to hang his feeding bag on. I recently hosed it down and it looks brand new. It was getting dirty from our daily walks or runs on the country roads, and wow, we are ready for some real roads now, ha!

Back to the story... So I decided to go out of my comfort zone and take Owen to 2 different places while feeding... thanks to #1 and #2. I still had to do the unhooking and unloading but once he was in the BOB I was happy to push him through the nursery and peruse the plants available for Mothers day. (Just can't blog "real time" anymore). We enjoyed the fresh air, and spent a little time there. Now I was getting hungry and had already planned on a bakery lunch. Yes the dietitian in me knows that this is something that just should never be done. But the dietitian in me also knows that 'never' in a diet doesn't exist, and these things sure are fun to do. So Owen and I crossed over the street and made our way to the bakery. If you are curious, it is called Anza Gluten Free bakery. I made my cinnamon roll selection, and was good to go. Owen and I were sure proud of ourselves. If only there was a grocery store that we could walk to we could really get some stuff done! I parked the BOB by the truck, and stopped his feed to unhook him from it to put him back into his carseat. In the process of doing this something set Owen off into a gagging fit, and I was reaching for the nearest burpcloth. These are a dime a dozen in our household, and there were many ready for action. I sat in the back seat of the truck, in the parking lot, holding Owen, and trying to talk him down. It was too late. He was gagging and having his mucous up then a vomit. They have been a little more forceful lately, but as I was making that mental note, the tube started coming out of his nose-inches- as he was gagging. I pushed it back in with the burp cloth, but I hadn't had time to sanitize my hands to get a grab on it. With his next gag it came out all the way to the number 8cm. For a reference, to make it down into his stomach, it is at 34cm down. At that point I figured that the tube was probably hanging in the back of his throat and just pulled it all the way out. His feed was almost done anyway, and his meds weren't due for another 2 hours. I loaded him into his seat, buckled him in, and he fell asleep, exhausted from all of the gagging. Didn't have to re-hook him back up that time... Cruising home, with him asleep tubeless in the back, and me noshing on my scrumptious cinnimon roll, I couldn't help but be a little sad. I felt myself getting in a little "I wish" conversation with myself... These are very dangerous if you have ever had them. I find them helpful if the conversations are kept very, very short. Allow yourself to vent, say what you wish, and then allow that to pass and be glad for and love what you have. So in this brief conversation with myself, I wished, so much, to not have Owen gag and vomit repeatedly daily, and to not have to place an ng tube on him, and for him to not feel any of these traumas. But these are real, and these are his and our normal now, as much as we have wished for "normal," this is our own normal. Our tiredness of Owen's gags and vomits with each sneeze or cough, or in bed, waking him up, stems from how hard it is on him. This train of thought screeched to a stop when I picked up the mail on the way home and had a lovely surprise from Aunt Syl and Uncle Doug. The tears of happiness came forth and I became glad for what was coming next. Yes, it was replacing the ng tube. But before that, I got to snuggle and dance and cuddle with Owen. Not once did I have to worry about where the tube was, if it was caught on anything, or if it was open or closed. We usually have to put the tube back in fairly quickly after it is out due to needing to give him meds or a meal, so it was such a special time, a carefree time. It was just him and I on the deck, laughing, and enjoying the sunshine. It was one of my favorite times which may otherwise not have happened. I also took some of the best pictures EVER with or without the tube. Here are some of my favorites.

Garden 2011

I got to thinking the other day that my last garden blog was one with a pile of dirt?! I was lazy and didn't go back to check but I am pretty sure... Here is an update with what we did before we went to SF...I picked and we ate all of the carrots that I grew in the raised bed up at the house. 1 seed packet= 10 pounds of carrots easy. MMM! I ate eating some of the greens and giving some to our chickens.
Chard and asparagus
More rows for weed control..
The beginnings of plastic weed control...

Family Day

The day of Mary's (aka Granny's) memorial was beautiful. It was a warm one, last week. Jim lead the service, and did a perfect job. He made us cry and laugh, which was just right. Family gathered at our home afterwards, which was extra special. Owen hadn't met his Aunt Shari, Uncle Josh, or cousin Mat, so this was a happy outcome out of the situation.
Na-Na with the two grandkids.
Blue even came around for a family shot!
Pa-Pa and his boys.
This was the best pic of the boys- Owen kept trying to grab Mat's ears, arm, anything!
See!
Owen was given a very special gift of mickey mouse eats with his name on them!
Love this boy so much. My heart hurts that we can't see him more often.
Chris and Mat walking back up the hill after a zip ride.
Looking so handsome! Cutest 3 year old boy I've seen!
Loved seeing the fam, sorry it had to be for a good-bye. The day couldn't have been more gorgeous, and that made it even more special remembering a wonderful woman.

Remembering Mary

Been meaning to blog this for a loooong time....

Chris's grandmother passed away when we were in the hospital. Mary, Chris's Dad's mom, had been not doing well recently, and she passed away with family near in Arizona. She was an active community member here in Placerville in her day, and she moved with the Brittons when they went to AZ. Mary was such a sweet heart, and would always speak her truth. She loved her family so very very much, and we will miss her so. The graveside service is tomorrow and we are housing a small family get together tomorrow afterwards. Although it isn't for a happy reason, we are sure looking forward to seeing our nephew Mat, and Auntie Shari and Uncle Josh get to meet Owen as well. The whole Britton side hasn't been together since January 2010 when we went down to Havasu for a belated Christmas. We will miss you very much, Mary.

A quick posting this morning....

Owen is doing well, had our follow-up cardiology appointment and EKG on friday. Sats were even up to 78%! We will take a C+ for SURE!! His c diff is doing ok, the hives are still itching, and the benedryl is still on board to help keep him comfortable. He is also getting more teeth, had an additional snaggler pop through yesterday. (Has 2 incisiors on the top, no front teeth:)) He is doing very well, going against the no tummy time rules and reaching like crazy for everything in sight. Even had his first wave yesterday to Aunt Court! We have been well fed between the Aubins, Bowens, Langfords, and Fusons. Blue was also returned to us by Kim and Austin, and Owen was so happy to see her. Have I said before how LUCKY we are for all of the LOVE in our lives? Just had to say it again. We are still unpacking and laundering around here, as well as catching up on sleep. The laundry is at an all time high due to Owen's poo issues, needing twice daily baths, washing whatever chair he is sitting in, and usually at least 4 outfit changes. Signing off from home sweet home!

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!