Christmas #2

We decided to have our first Christmas on Christmas Eve. This was a tradition that I had growing up with my immediate family. I worked hard the night before to clean the house, make waffle batter, and get ready for the fun ahead. I did a last minute shopping trip that week to purchase new jammies for us all. We each had blue jammies this year and we got to wear them the night before. Owen's jammies did only last a little while, as he almost always spews his breakfast all over them. "Old Faithful" is my new nickname for him--he can shoot almost 3 feet out... poor guy... Anyway, we had fun opening gifts, and then onto breakfast. Chris made the bacon, I juiced oranges and carrots, and made some yummy blueberry waffles. We enjoyed hot cocoa and each other's company. It seemed like forever since we had been home as a family. Chris ended up taking a class on 2 of his days off so it seems like he hadn't been home in a week. We were so tired but so happy to be together us 3.

Christmas #1

I am going to be a bit behind, and playing catch up here, but I wanted to get a start on our holiday bloggin! Our first shindig was on the 20th at the Aubins home.
MMM! German food: pork roast, saurkrout (?Spelling!!), potato, strawberry, apple verenics, mmmm!! It was so good to get together and enjoy each others company. We enjoyed seeing some old, old home movies of when my dad was a baby! Crazy! They were even in color. Ok, sorry Dad...
Oh just start by cooking the verenics in a CUBE of butter! WOW! Did you take your lipitor today?
Cousin Michael was sooooo excited to meet Owen. We are still taking a lot of precautions with Owen, but Owen had to snuggle with Cousin.
Thank you Nancy for Owen's hat! He wore it proudly! It was such a nice day! I proposed we do it again in the summer!! Thank you for spoiling Owen so much. He is so lucky for such a great family!

Also along with Xmas gifts, Owen decided to give us a lesson in Teething 101! His first tooth has emerged on the bottom! He really only had one horrible, no good, very bad day...Other than that he is back to himself!! His weight is up in the high 13's! Wahoo! Cardiology appointment 1/3, so we will see what is in store...I'm preparing for more wait and see! That is his style! Love and Christmas wishes to you all!

A quick update

Ok it's been a while! Here are some new pics!
The Bakers came up on a blustery day, we just missed the hailstorm on our walk!
Owen pulled his tube out while I was pushing him in the stroller. He ended up eating well for 1 feed without it, until I could get home and replace it with the head holding help from my mom. THANKS mom! Made for some good pics, though!
The tractor and Chris turned the garden wayyy under!!
Mama B loving on Owen!
Annual girls birthday/holiday lunch at Sequoia. MMM.

Just bragging now

Owen was getting changed (which he likes!) and started sucking both thumbs simultaneously. It was too adorable at the ferociousness he was going at it- I yelled to Chris- "Camera on the table, STAT!" and he delivered. Too funny. As most parents know the first time kids do something-yes anything- it is cause for photos, announcements, bragging, and other overreactions at the adorable smile, move, rollover, mess, or noise!
One of my absolute favorite days with Owen. We went to Lotus on a day that seemed to be beautiful. We walked outside, all ready to go, and there were some dreary clouds..The morning had been sunny and warmish... I went back in, grabbed my windbreaker and we went anyway. Running halfway around the track it did start to rain. This was also when Owen snuggled into his fleece and fell asleep. I put on that jacket and kept on it. Owen was dry and warm, so I enjoyed a wonderful run. The drips let up and the fog moved over the hillside. The park was almost all ours. I gathered some leaves and when he woke he loved looking at them. These photos are probably some of my all time favorite!
Curious little guy.

Friends and Family

Owen and I had a speech therapy appointment and got to see Tish and her son Christian. Tish and I worked together at Cafe Bernardo's and have been buds since. That was in 2001, wow how time passes. I remember when Christian was born, visiting them in the hospital, doesn't seem like that long ago. Now she is expecting #3 in February.
Went on an outing to High Hand Nursery in Loomis to celebrate Wynter's 30th birthday!! Couldn't resist the outing, admittedly it was quite a stretch...Driving to Loomis, in the rain, by myself, to a restaurant (which is technically off limits due to germies). But I really felt that the benefit outweighed the risks. It is really good for him to get out on little excursions here and there and interact with other people on a semi-regular basis. Owen was amazing, and slept on the way there, and the way home. I have a flashlight to safely glance back at him when it is dark, because those mirrors don't help if it's dark outside! It was a beautiful night in the nursery, with lights in trees, lanterns hanging, and fire pits. The food was pretty good, and the company was better. Happy Happy birthday Wynt, I hope you had a great one!
Iselin and I met up for a walk on the trail in Folsom. This is one of my favorite things to do when Owen and I are just hanging out at home. We will go for walks/jogs around our house. But getting out and going somewhere else is great. It is getting out, but also not hanging out somewhere where people are coughing or threatening us with their bugs. Can you tell we are a little careful about Owen's exposure? It was a beautiful day, and the boys enjoyed the walk also.
Best bud Evan and Erika and Jeremy hanging out. Erika and I grew our boys together, ha! We would swim together towards the end of our pregnancies.
So blessed to have wonderful family and friends. How many times can I say it? It never wears out for me!

Thanksmas- a new tradition

Aunt Jac and Uncle Colin (when he gets married in, ha!) came over for the first annual thanksmas dinner. We chose a surf and turf theme, had good drinks, games, and of course cuddle time with O.
Yes his bib says "being good is boring" and I think he is the geekiest adorable thing ever in this picture! Aunt Jac gave him this ornate piece of headgear. Look forward to many years of Thanksmas ahead.

Christmas Tree

This is the final product! We supported the Rescue fire station and picked out a beauty. Owen was asleep in the car so we shopped fast! We also did this outing after grocery shopping...Not a lot of room in the truck bed after that. Chris and I had our usual laughs that happen when we are lifting heavy items together. Someone always pushes too fast, someone is always walking backwards, it is always goofy to coordinate!Owen enjoys the lights, and eats in front of the tree daily.
Why is it always so messy?
Why is it always hard to get a straight edge? This photo is documenting Chris cutting off the end with a chain saw, yes the trunk is outside the house, but it was loud and messy! Owen and I did not help in this endeavor. The final product kept falling over, at least 3 times. So Chris has it secured by string and screws. This is nothing new to me, as I grew up with 20+ft tall trees that always had to be secured to the staircase/bannisters with string for safety. It is so funny to hear the words out of Chris's mouth, this year much more positive than the last during this process! Is there a laser pointer cutting edge thing to ensure a straight edge...Even with a straight edge they lean sometimes..

Heart Info/Owen's plan (nothing is ever set in stone with him, though!)

I got this from the Down's heart group, I hope this isn't causing any copyright issues...

I just cut and pasted it. again, the down's heart group website is the source.

Blalock-Taussig (BT) shunt (Owen had this on 8/13)

This procedure was developed in the 1940's and is a palliative (temporary) treatment used to improve the blood flow to the lungs in conditions such as Pulmonary Atresia, severe Pulmonary Stenosis, Tricuspid Atresia, and severe Fallot's Tetralogy, until such time as the defect can be repaired.

This is usually a closed heart procedure which is carried out through an incision through the ribcage on the right or left of the child's back. The shunt (a small tube of synthetic material) is attached to one of the sections of the blood vessel to the arm and to the pulmonary artery making a direct connection between the aorta and the lungs (mimicking the ductus arteriosus). This allows more blood to flow to the lungs and improves the oxygen saturation levels (SAT's) relieving severe blueness (cyanosis) that the child may be experiencing. ***Owen's incision was sternal****

A shunt is used for a limited period, usually up to six months, until the child outgrows it and a further shunt is necessary or a full repair is done. The child will need to take an anticoagulant such as aspirin to prevent clots blocking the shunt. ***Owen takes a quarter of a baby aspirin daily, kinda cute if you gotta take it***

Glenn Procedure (Feb/March)

This is another palliative (temporary) treatment used to improve the flow of blood to the lungs in complex conditions where only one ventricle is working properly and not enough blood is getting to the lungs.

It is an open heart procedure usually using the heart lung bypass machine and involves connecting the superior vena cava (which returns unoxygenated blood from the head and upper body to the lungs) to the right pulmonary artery thus taking the blood straight to the lungs for oxygenation without going through the heart. This increases the blood flow to the lungs and decreases the work of the heart. It will not work where there is pulmonary hypertension as the blood has to flow without the force of the heart pumping.

It is sometimes referred to as the Modified or Bi-Directional Glenn Shunt as the procedure performed now is a modified form of the original operation and it now supplies blood to both lungs, hence bi-directional.

The Glenn is usually one in a series of operations, done after the removal of a BT Shunt, or pulmonary artery banding, for example. ***Owen was on the bypass machine for 29minutes with his first surgery.***

The Fontan Procedure (2013-15)

This type of surgery is used for children with complex congenital heart disease where the child cannot have surgery that gives them two pumping chambers and it usually undertaken at two to three years of age. It is designed to direct the blood coming back from the body directly to the lungs, without it being pumped there by the heart. Many patients will previously have had a bidirectional Glenn shunt.

The Fontan is an open heart procedure during which the unoxygenated blood returning from the lower part of the body is diverted directly to the pulmonary (lung) artery without passing through the right ventricle. This may be achieved in several different ways all of which connect the inferior vena cava directly to the lung artery, allowing the de-oxygenated blood flow to the lungs while the ventricle pumps the oxygenated blood to the body. The procedure relies on blood flowing to the lungs without the benefit of a pump so it is not suitable for patients with pulmonary hypertension (high lung artery pressure).

Ok this was a minor miracle that I was able to complete these blog postings with Owens supervision. He is now pinching my elbow with some crazy baby man strength so it is time for us to go play!!!

A Plan?

Okay I am typing with a post-feed baby who is still in the vomit zone (versus the vomit free zone, namely 30 minutes after the end of a feed). He is allowing me to type with both hands at this current moment, so we will see how long that lasts! Type faster, type faster!

Cardiology appointment on 12/2... Sats in the low 80's, weight up to 12# 13 ounces, echo/EKG looking okee dokee... Chris can explain everything so much better, but here is the plan?

1. Lasix only twice daily for a bit! Yay! No adult pees in the middle of the day!

2. Follow in a few weeks as well as January to check sats.

3. Cardiac cath

4. Fix anomalous veins as able

5. Glenn Procedure.

3-5 Will occur in Feb/March depending on how Dec/Jan sats and check ups go...You know, this kid is a wait and see type of dude!!

I will post a little about Glenn procedure as able!

Guess what? I have 2 mommas for feeding therapy and friendship! Their little boys have issues feeding and other chronic problems (which is not good) but soo amazing that we are connected! (which is good!)

One of them being a momma from Ron's house ( have I blogged this!??) and the other one is Paxton's momma, who also has Ebstein's. Remember previous blogs about him?? Testing your comprehension now, ha!!

So, Still enjoying every last second at home and yes dreading going back...Admittedly will be harder than the first time, none of us knew any different. Now we have routines, bonds, smiles, and Owen doesn't sleep for 90% of the day!!

Wow he is just enthralled staring at the screen..I will try to look up glenn procedure and then post something about that if my techie (lack of techie) skills allow!