We have a plan...

                   

Owen did so well yesterday at his Cardiology appointment. The highlights were:
1. When they called his name to come back for his appointment he ran up to the MA and said "That's me! That's me!" and gave her a hug.
2. He was perfectly still for his 35 minute ECHO thanks to the monster truck DVD we brought and his awesomeness

3. He was also perfectly still for his quick EKG. These have been more challenging for us in the past as  he really does have to be still to get a good reading. He was so still (with minimal holding down on our part) and it read within 2 seconds...A FIRST!
4. He put on gloves and checked Dr Rivera's heart first with the toy stethoscope we brought then with the doc's stethoscope.

Owen's oxygen levels have been stable at 83-86% for a while. This is consistent with his anatomy and he really won't improve. The challenges with a lower oxygen level for a prolonged period of time are many. The body is in a constant state of trying to adapt. His body makes more red blood cells, so his blood is thicker, and his hemoglobin and hematocrit levels are chronically elevated. This is why he takes 1 baby aspirin daily to thin his blood from the thick red blood cells. The risks are mostly here-- he is at a higher risk for stroke for this reason and other as well.

The other challenges is developing normally with a decreased oxygen level. He currently does not have any developmental problems but we have also been working on his development for years!

So MD usually recommends the next surgery between ages 3-4. He has mentioned this to us in the past but I also thought we would monitor for failure first and then fix Owen up. The problem with that mentality is that heart damage can occur and then he could go into surgery in a weaker state.

So, given the fact that our upcoming fall season is a little busy with you  know, a new baby, and the fact that Owen is stable now he was agreeable to us moving forward with things in the Spring.

So he will first have a cath in Februaryish and then the Fontan procedure in April/Mayish at UCSF.

The question of the years still needs to be answered....
What about the feeding tube?? The one we haven't used for a year!? Well Riv was willing to sign us off from a cardio standpoint and defer to GI to take it out but with an actual surgery on the books he thinks it wise to leave it in. It doesn't cause any issues, but it would be more of a milestone to get it out! So we are with the tube for another 6-9 months.

Here is some info I just cut and pasted if you want a review of Owen's anatomy, past procedures, etc. Owen's summary/my additions in RED.

Operative stages for achieving a Fontan circulation This final surgery is the goal of the previous two.

The type of operation needed in the newborn period is quite varied depending on the specific type of single ventricle cardiac defect. In some babies there is not enough blood flow into the lungs, resulting in cyanosis. In these babies, a tube graft is placed from an artery (usually the left subclavian or left innominate artery) to the pulmonary artery. This is called a systemic to pulmonary artery shunt or Blalock-Taussig (BT) shunt. Owen had this placed 8/13/2010

In other babies, the flow of blood into the lungs may be excessive, placing an extra burden on the ventricle and exposing the pulmonary arteries to dangerously high pressure. In these babies, a procedure will be performed to restrict blood flow to the lungs. This is done by placing a piece of material or a “band” around the pulmonary artery.

Rarely, a baby with a single ventricle anomaly will have “just right” flow into the lungs so that an equal amount of blood flows to the body and the lungs. These babies do not require intervention in the newborn period. This was why the team waited so long for the first surgery, as they wanted to be sure that he really needed it.

Whatever is needed in the newborn period, the aim is typically to balance the blood flow between the lungs and the body, achieving stable oxygen levels and adequate heart function.

The second stage for most children with single ventricle anomolies is undertaken around three to six months of age. The operation is called a “bi-directional Glenn” or sometimes a “hemi-Fontan.”Owen had this in Spring 2011... Need to look up the date again...

During the Glenn operation the large vessel that drains blood from the head and upper body back to the heart (the superior vena cava) is taken off the heart and sewn directly to the pulmonary artery. If a prior BT shunt was present, it is removed. If a pulmonary artery was previously placed, it may be removed but can also be left in place in some situations.

The Glenn operation has two major advantages in most children. First, because the connection is a direct one between two blood vessels, rather than made of artificial matter, it has the ability to grow with the child.

Second, it removes some of the work of pumping blood to the lungs from the single ventricle so that the ventricle will no longer have to pump all of the blood to the lungs in addition to all of the blood to the body, which places it at risk for early heart failure. In most cases this stage is tolerated the best of all the stages with a survival rate of 95 percent or better.

After the Glenn operation most children will have oxygen saturation levels of 75 percent to 85 percent. His saturations have met goals after this procedure.

The third and final stage in the reconstruction of a single ventricle heart defect is theFontan completion operation. This operation is usually performed at 2 or 3 years of age, based on the child’s size and clinical status. The shunt placed here is a large one that is meant for kids >15 kg. It is supposed to last decades.

During the Fontan operation, blood returning to the heart from the lower half of the body (via the inferior vena cava) is connected directly the blood from the pulmonary arteries. Up until now this blood has bypassed the lungs resulting in oxygen levels lower than normal.

After a Fontan operation, oxygen levels will be nearly normal (90s). The two most common methods of performing the Fontan completion today are the “lateral tunnel” and the “extra-cardiac” techniques.

In the lateral tunnel method, a tunnel-like patch is placed inside the atrium so that blood returning from the inferior vena cava is directed through this tunnel. A connection is then made between the end of the tunnel / top of the right atrium and the underside of the pulmonary artery.

In the extra-cardiac method, the inferior vena cava is taken off of the heart and a synthetic tube, usually Gore-texTM, is sewn directly to the top of the inferior vena cava and to the underside of the pulmonary artery, routing the blood flow outside of the heart. We are hoping for the extra-cardiac method as the less trauma the heart itself can have the less likely for him to have irregular heart rhythms. 

Ok so there you have it... Yipes. We are dreading this since we know what to expect per se, but the experience does come in handy. It will be interesting with an infant, dividing our time between two kids who we want to be with so much. The time to prepare is nice but also gives us a lot of time to think about it all. Thank you to all of the continued support, love, and care for us and "baby O" who is not so much a baby anymore! He read (memorized) me the entire The Very Hungry Caterpillar tonight, so special. I'll try to post that video if I can be so technical tonight. 

Home days

Until the last 2 days it has been pretty hot outside. We've spent more time indoors than we all like to. The past 2 nights we have enjoyed time out on our deck and the boys have been racing around the yard. Tomorrow Owen has a cardiology echo and EKG and sat check. Hoping for no news and no plan! 

Jelly bellies in my belly

I passed the glucose test. It was fun to eat the jelly beans- for the first 20 or so. A desirable value is 140 or less mg/dL. I went to bed early last night but woke to my level emailed to me this am.

120mg/dL- awesome! So glad to be done with that and find out my sugars are groovy. A woman's insulin
needs triple during pregnancy, a fact
that is so mind boggling. Our bodies really are amazing to adjust to handle that load.

I'm measuring right on at 28 weeks and my weight is within healthy range for growing a baby (although I get wow you're big! A lot.) I gained 32# with Owen and 12 inches around my belly button. Yes I was big but that's what's supposed to happens. I'm suspecting very close growth with this one as I've gained 18# and 7 inches so far around the button. it is my favorite- feeling her move around in my belly. She was head down yesterday, although that can change!

Oh baby!

I'm in my third trimester, growing big and things are looking good. Have an appt tomorrow hoping all is well. Doing the glucose test. My midwife gave me a few options to get 50gm carbohydrate in. I picked 50 jelly bellies. I have to say I'm looking forward to it, ha! I drank the glucola syrup soda with Owen and my glucose was 1 point higher than the lab likes so I had to complete the 3 hour test. Those results were fine. Hoping to slide by on this test in the morning.

Hope the rest of pregnancy goes smoothly, here are a few belly pictures for fun!

Owen gets a kick out of feeling his sister move. It's pretty much the sweetest thing ever. Hard to believe I'll be a mom of 2 soon. Excited for sure but nervous for dividing my time. I love how much 1:1 time I have with Owen. It's all gonna change but I love change so that's good:).

Weird elbow or baby rear poking out in an odd angle.

Big garden vs little garden

This year we opted for 4 raised beds vs the gigantic 100' x 50' garden we did last year. I had a vision for 2 of the rows this season but the vision was overshadowed by large amounts of weeds and an early heat spell back in April.

I planted 70 potato plants in the big garden back in march when I was feeling great before the prego sick kicked in. The next row over I envisioned overflowing with zinnias. Sadly we hadn't turned the water on (due to a broken pipe) and lost the potato plants with a heat wave shortly after they took root... Bummer!

I didn't lose hope with the zinnias though- and planted 4 packets along 20 feet. I was packing them in as the weed situation in the garden was quite intense. And by the time the soil was ready for zinnias I was much bigger round the middle and found it a little more challenging to bend and pull weeds out.

The zinnias started growing, finally. And I didn't give up on the potatoes, knowing that they were probably hangin out underground just a little moody from the conditions. So we watered 2 rows for 2 months. Then the water bill came. 2 days later I dug up the zinnias and moved them to a raised bed up by the house that had some room. The water is now off at big garden. I miss having such abundance and ability to share but it really wasn't feasible this year.

The raised beds are decently managed, and I harvest what I need when I need it, in under 5 minutes. With the big garden we would get lost down there harvesting or weeding for hours out of necessity.

I do miss it terribly though! I would love to do a smaller bigger garden next year but we will see what shifts happen around here as a family of 4:).

The second photo is one of the 2 5 gallon buckets Owen and I hauled up the driveway. (Where was that red wagon when we needed it!)

First photo is the planted zinnias. Hopefully they thrive and grow to 5 feet as they did last year. So far my best ones are the ones from saved seeds...

Owen is 3!

Yup that's correct... We have a 3 year old! He is still wearing diapers but he can chat your ear off all day, has been "off" the feeding tube for a year, enjoys doing anything with friends or family, and is very excited for his baby sister coming in October.

We had a wonderful low key day riding the train with cousins and then swimming at the Aubins house.

He really wanted a spider and ladybug
Cake so we found a ladybug piñata at party city and I made vanilla bean "dirt" Oreo crumb top cupcakes with plastic bugs.. Easy!

Although we have a cardiac appt on 8:6 we have had a very good year! Owen has grown 4 inches, 6 pounds, and is now 38! Inches and 32 pounds. He graduated from OT & ST from the county and will continue Speech at our close by school for 30 mins per week working on articulation. His social skills have developed to the point where we are preparing him for kids who do not want a hug for a greeting! He enjoys a variety of foods (still will not eat fresh fruit or veggies tho... Except kale, basil, sage).

What a wonderful year! Wish us luck this week with bedtime boot camp in a big boy bed! Chris is setting it up today, so hopefully this week will go smooth. He's never been able to get out of bed on his own and this new bed he will..... Breathe.... But we need to get it Rollin before the next babe is here!

Another successful camping trip on the books

We have been using our trailer a lot since February. This last trip was to Snowflower lake up 80. It was booked because of the holiday so we had to be a little further away from the rest of our crew. We loved our campsite in the trees.

We brought both dogs and Buster did better than he did at Collins lake. Previously he would not pee when walking on a leash... This has much improved! The lake was very small but just perfect for kayaking around.

Since it was an RV park there was full hookups as well as a pool. Owen had a blast with his aunties and cousin Mat.

Buster has enough room in the backseat of the truck, even riding with Blue, but he always gets himself in weird positions cracking us up the whole way!