Christmas time!!!

The great anticipation on the stairs waiting to go up to CHRISTMAS!!!

 Oh Toothless Johnathen. He was soooooo excited

 She is REALLY excited about her new baby, she hasn't put him down

 Sevie Loves his ELMO- and bursts into song. Nanananut Elmos world!

 Johnathen got a DS, and "you can play it while it charges!"-J says  "oh goodie" mom thinks

 Just Dance Disney is a real favorite

cookie making 101

Neleh has a cookie exchange for her Preschool Christmas Party tomorrow. She is my "perfectly perfect" child for anyone who knows the story Mooseltoe. We have talked since last Friday about what kind of cookies to make. I was going easy breezy with the pretzel, rolo, m&m but no rolos on my ONE outing to Walmart. I guess everyone else had the same idea. I had her look through cook books. I told her about reindeer looking cookies- she needed me to "look that up" meaning google or pinterest so she can see it. Alas we decided to do roll out sugar cookies so she could decorate them.

Lots of sprinkles!

Then we even went a little more crazy and made "snow balls" with the marshmallows

We got this idea from Pinterest. I am thankful the 4&5 year olds these are made for will think they are great. These were way cuter on Pinterest. They are an upside down heart shape cookie, choco chip eyes, and marshmallow beard.  NAILED IT!!!! hee hee

CHiRp, cHiRp.....

Sorry blogity followers for the crickets chirping on here...
Here we are THREE weeks post Fontan. It is all a bit of a blur. Severin did really well for the first week home. He slept, ate, healed, his pain was under control, we were finding our groove. I made an awesome dinner on the 29th. I felt like me again, and I could handle my world.
Then the night terrors started, and a cough, and fluid positive, and zippo in the sleep department. Severin wakes up at midnight and stays in a delirious state of awake until about 5 am. Or if he somewhat stays asleep he wakes up crying out every 20 mins or so. He feels around to make sure I'm there, and then falls back to sleep. Of course I am sleeping next to him otherwise I would never sleep. His cough sounds like croup is coming but it has been 4 days and it hasn't gotten worse. On one of the "no sleep" nights he only got one dose of his lasix, after that his eyes are more puffy. His left eye was really red and blood shot looking. I thought he might have pink eye, so I started an antibiotic. It didn't seem to make a difference. Fluid retention is a common complication of this surgery. He is so grumpy. His sats are still 83-90 which is awesome. Cardiology wants post Fontan kids to stay above 85%.
Aside the normal Severin worry. My Sweet Grandma went to Heaven on Dec. 5, at the ripe old age of 91. I knew she was deterorating. The weekend before Sevs surgery she fell and broke her leg and her foot. I couldn't go and see her at the hospital, because I needed to keep Sev and myself very healthy. After her fall she stopped eating and drinking, and just slept. I was able to visit her a few times, and the Saturday before she died I spent a long time with her doing her hair, fluff and puff. She talked to me, it was a quiet voice, but it was good for my heart to hear her talk. I love her so much. I can only imagine the sweet reunion in heaven, she has been without my Grandpa for 20 years. I am filled with so much gratitude for this Woman, I was blessed to call her Grandma.

Post Op follow up

Dang it I forgot my camera! I do NOT do these early morning appointments. Anywho Severin checks out great! Xray, EKG, Blood Pressure, O2 sats 83-89 on room air, weight back up to 12.0 kg (26.45 lbs) They said he gets to kick the oxygen habit during the day, and take it down to a 1/2 liter at night. Weeeelllll.... that is what they say in every post op appointment. So I took Sev off the o's until we came home by about 5:00 his lips and finger tips were purple. Sorry I have seen my boy VERY pink for almost 2 weeks I was not about to let that go. For now I will wean down the O2, not be so freaky about him keeping it on 24/7, and let him keep healing at his own pace.
After clinic we met up with our Heart Buddy Jessica. She has HRHS like Sev and is 22 years old- same heart! She gives me a great hope and perspective of Severin's future. I am so thankful for medical advances, all she had to endure 20 years ago, made procedures easier for my guy today.
I have been thinking about something today.  I recently found out one of our CICU neighbors earned his wings and returned to Heaven. There is no rhyme or reason to which kid gets to stay and which one has to go. I sometimes even feel guilty that I get to see my son grow and others do not. This heart community is very unique population. We see many little ones leave too soon. We grieve with each other. We stand by each other for the entire journey. We celebrate little milestones, and remember "angel days". I know there is absolutely no scientific/medical reason Severin is still here. But yet he is. Not only here, but thriving here. I allow myself to dream of his future.  I know he will be here until he has fulfilled the measure of His creation. I hope his measure is longer then mine. He has great things to do on this earth. I, as his mom will make sure he has every opportunity to accomplish what he needs to do. I can only accredit faith, and prayers for sustaining our son and our family. One thing "Heartland" has taught me is perspective.

First day home

Severin took a 5 hour nap. I was really nervous and checked him constantly. When he woke up the kids were outside playing, it was such a beautiful day. He wanted to go out too. So I drug out the concentrator out on the back porch, and had his 100 ft oxygen tubing on. And away he went! He made it to the swing set, then to the road on his bike.

 

Thanks for the 100 ft of tubing! We even had JP and Soph over

He only got tangled up ONCE

Bath time!

He is holding his O2 on.

On Sunday Sevie got his sponge bath, hair do, lotion, and pjs on

 

oh yes he did!

FIVE DAYS!

 

5

Five Days ago I woke up after very little sleep, snuggled my boy and started the dreaded drive.
Five days ago I handed my sweet baby into the capable hands of two of the most brilliant men I know, and asked them to bring him back to me.
FIVE DAYS ago we sat for 5 hours waiting for surgical updates.
five days ago our sons heart was being "replumbed" in hopes of giving him a long life.

FiVe DaYs later our son is home!