Frazier's Full House Farm and the Adventure of Addy's Heart: A GOOD UPDATE!

I really have to hand it to those moms that manage to blog every day, or at least once or more weekly. I think at least several times a week that I need to write....but then a million other things in life happen and before I know it another month has passed me by! I guess with all I have going on that should be excusable but I still really want to find some way to prioritize some time to make more regular postings, for all 15 of my readers ;) That is, after mommy & Addy do our special time before bed after I've been gone all day at work, clinicals, or school!

I'm really not a fan of selfies, but Addy recently learned how to make "fishy pouts" and "kissy lips" and she thinks it's super fun to do with mommy and take pictures together!

Grandma has always been convinced that Addy was going to have curly hair! Her hair was actually really curly that night but the pics really don't show, I think Grandma might just be right! Love this girl!

So anyway, we had our cardiology followup for Addy today. We actually were due back at the end of March but due to Heath's job change we had to wait for his new insurance to take effect. God watched over us and didn't require Addy or any of our children to require medical care during that time so for that we were blessed. We have noticed over the last month or so Addy has had more cyanotic moments than before and her oxygen saturation has been 91% instead of the 94-96% it was before. Also, even though Addy's heart rate has always been a little higher than most single ventricle kiddos I know, her HR is still 140-160 most of the time, which is a little high to live life at since she is almost 3. Jeez, it's hard to even accept that she's almost 3.... it seems like just yesterday we were starting this helluva journey. I sat in class today listening to a lecture about Pediatric Palliative Care and found it very difficult to concentrate as I thought about how much it pertained to Addy and complex congenital heart defects. I'll actually take this as an opportunity for education that Palliative care really is there to provide an extra layer of support for patients and families that are experiencing any life threatening, serious, or difficult diagnosis or illness. Their goals are to improve comfort, support, assist with pain management, and help make sure the needs and wants of the patient and family are heard. These great ladies really get a bad reputation because people hear the words "palliative care" and it has a tendancy to become a hostile or awkward situation that they are here to say your child is dying or that they want to make them a DNR or limited code. This does not necessarily mean "end of life" or "hospice" (hospice typically anticipates death within 6 months), although they may certainly be included in these stages. Our program at VCH unfortunately lost a great MD recently that headed up our Palliative care program so the remaining NP and social worker now they are primarily focused in Heme/Onc and perinatal patients simply because of the volume of patients is simply all 2 people can handle . Other hospitals around the country are making in common practice to consult them as soon as a serious CHD diagnosis is made and they follow the patient throughout their entire life, every admission, surgery, and event. I never really thought about it but in hearing this lecture it reminded me of several times over the last 3 years we have encountered issues with pain management and communication of the team that had palliative care been involved, I believe could have been handled much better with more satisfaction from us and better care from Addy...and this is coming from the two PICU educated parents who sometimes have more knowledge than the caregivers and whose words are probably heard a little more often than most parents that aren't PICU nurses. So then I wonder, how much better could we provide care if we made this our standard practice for all of our complex CHD families, to have an advocate and someone that has seen us and our child every step of the way. I guess it just reminded me that our experiences with Addy as a heart parent really have changed how Heath and I nurse and act as providers.

So I kind of got off subject but back to Addy's appointment.....it went great! I think she forgot the whole cardiology visit routine so there were a few tears when she had to lay down for the echo and EKG but once she did and nothing painful came afterwards she was a trooper! Her echo looked wonderful with the best function she could possibly have, no leaky valves, and no clots or narrowing anywhere. We cut her lasix in half again since Addy has been "water hungry" again lately, and we are stopping it in a month. Hopefully we are out of the clearing for pleural effusions by this time! Addy is also wearing a holter monitor for the next 24 hours just to check her tachycardia (high HR) and make sure she isn't having any arrhythmias that could be causing the blue spells or high HR....and it will put mommy & daddy's concerns to rest. She was a trooper and by the end she was chatting with everyone just like always. And the best news was...WE DON'T HAVE TO GO BACK TO CARDIOLOGY FOR 1 YEAR! When we finished in the clinic we went up and visited a few of our favorite nurses, doctors, and nurse practitioners on 7A, the cardiology floor. The men and women that work there really pour a lot of themselves into those patients, so they are always very happy to see happy, healthy, growing patients that don't hate them anymore! We are so thankful for the amazing people that we are honored to work with and have take care of our child.

OK, let's get this over with!

You want me to do what? Nope, I'll sit, thank you.

Checking out my heart pictures, don't go far Mom!

Look left...look left...OK, look at the phone to the left!

All done, let's wipe this goo off!

I think I prob'ly need to eat after all that!

It looks like it's finally going to stay warm enough to plant a garden! Heath had some big helpers to plant the vegetables. For the first time in my life I saw Addy NOT want to get dirty, and Maci getting down and dirty with gardening and not mind a bit to be hot and dirty- I was so proud of her!

Maci helping Dad, Addy carefully supervising

Dad, you planting?...Dad, you planting?...Dad, I plant too?....

I'll just move the plants around instead of planting!

The only other news that we have is that Addy is going to need glasses! I have speculated for quite awhile that Addy couldn't see, but my suspicions are validated! Maci is already in glasses but has binocular and convergence problems so she will be starting vision therapy soon to help her with helping to strengthen her eye muscles and hopefully make school much less physically exhausting. Addy apparently has some acuity and depth perception problems so she will also need glasses. This explains why Addy can climb the cabinets like a monkey but she spontaneously falls no less than 20 times a

Those baby doll glasses don't fit me!

Scuba Steve to the rescue!

day and trips over her own feet all the time! It just wasn't logical to me that she can do the splits, headstands, and tumble better than most 5 year olds, but her feet are always banged up from her falls. It's been almost 3 weeks and they still aren't in...I'm going crazy waiting! It's sad that our little hobbit had to wear the "newborn" size! I considered the less bulky metal framed ones but decided they would only last about 5 minutes with Addy. So we're going
with the plastic rimmed indestructible ones for now and maybe in 6 months or a year we'll reconsider, maybe by then her head will be a little bigger! We tried every pair on that they had and finally found a style that mostly fit, just had to order them in pink. As you can tell, Addy had a bit of a thing for glasses before so hopefully she'll be more than happy to wear them all the time, lol!