6/05/20 - A great trip to the cardiologist

Update: We got some wonderful news from our cardiologist!  We will still be watching her aortic arch that the amazing Dr. Hammel (seriously... other heart surgeons/whole institutuons said "no, why bother", he said yes. Amazing.) reconstructed almost 1 year ago, for any scar tissue that might grow and make blood flow a problem... maybe another year or year and a half until we don't have to watch for that anymore.  Her bicuspid aortic valve (info about that https://www.mottchildren.org/conditions-treatments/ped-heart/conditions/bicuspid-aortic-valve) isn't leaking or causing any problems.... and the tiny vsd that was left over is gone! Whoohoo!  Praise the Lord for Omaha, His goodness, and the blessing of this great news about Annelise's health!🥰🥳🤩

This morning, we are on our way to the cardiologist!  First time bringing her out for an appointment since March! We can't do an echocardiogram via telehealth though, so we're going in!
I bought a rain cover for her stroller, and we are masked up.  Trying to preserve as much of our bubble as possible in the world. Using our brave hearts this morning to rest in the comfort of knowing God has our future in His hands.
Annelise is a late sleeper usually, and is very not excited about being awake.

12 lbs!

6/1/2020 - One year since the road trip

Last year, on June 1st, Kevin and I packed up the car and hit the road to Omaha❤
This year on June 1st, we spent the day at home with our 51 week old baby girl. This has been the longest and shortest year ever!
We were driving toward hope.... driving away from the rejection felt by not being able to find a willing heart surgeon for Annelise locally... trusting that the wisdom we prayed for was taking us where God wanted us to be.  The thing is, if we had stayed here, that's where we would have found our hope in the Lord,  because when we look for Him, we find Him.  For Annelise's sake though, I'm so glad we took the leap and knew in our hearts that her best chance was to be born where we knew everyone would be on her team. I love our Omaha story.  I don't think anyone could have cared for Annelise better, or us for that matter.  God knew.  He knew then and He knows now what is in store for Annelise, and for me, and you for that matter.  I am so glad that I can trust Him with my future, and all of what's going on now as well.  I haven't left a song here in awhile, but I heard it for the first time "at" church (online) this weekend, and I loved it so much.  It's so hard to get over myself and my plans for my future... I love songs that make me sing what my heart wants to say.

I'm Available song

 Cute baby on a pile of laundry. Love, laugh, love, laundry.... that's how the saying goes, right?

 DIY project for the big day next Wednesday!

5/28/20 - There is SOUND in our house!

Turn up the volume! Thank you Lord for such a gift, our silent baby found her squeaker! Can't wait until it's safer to get a new bronchoscope to see what's going on with her paralyzed vocal cord.... or is it still?🤔😁  During that scope they will do a big hearing test that should also get the ball rolling on what kind of hearing aids might help her.  The procedure was scheduled for April 6th, but got cancelled when everything else non-emergent got cancelled.  Hard to be patient... but also not excited at all to take her out of our bubble.

5/27/20- 2 weeks until the big ONE!

Hello!  This blog is duplicate information of updates that are posted to facebook as well.
If you don't have a facebook page, please email your photos of Annelise rocks to me at jnet.buchanan@gmail.com
So excited to celebrate the birthday girl!

 Tired of this photo shoot :)

This adorable outfit was ha dad down from two of our toddler friends with trisomies in Southern California❤

5/21/20

I think we are pretty tired, but more in love with our sweet baby and how well she is doing!
We have a bummer and a blessing all in one today... after we started giving her sweet potatoes through her g-tube, we noticed that when she was laying down, already on an incline, she had orange tinted drool. We had stopped her reflux meds for weeks already, and she seemed to be fine... but orange drool after sweet potatoes points to acid reflux. The blessing is that we discovered it while it is mild, and there's no indication that anything that came up from her tummy bothered her lungs🥳.... bummer is the disappointment of having to add a daily med back on the list.  Her GI doctor wasn't surprised at all, due to Annelise's low muscle tone, she said it's very common for the muscle that keeps the food in the belly to have low tone as well.  I know God has a plan, but since I also know He wants me to share what's on my heart.... I'm praying for this med to work beautifully, and for her muscle tone all over to shape up🥰
She's working on it!  💪😁🏋️‍♀️
I've been getting some questions about what to get for Annelise's 1st birthday on June 10th!  Here's  a link to her Amazon wish list if you are interested.  Of course please do not feel obligated whatsoever.

https://www.amazon.com/hz/wishlist/ls/2T903DZL9G4OP?ref_=wl_share

We aren't sure how we will be celebrating her big milestone of ONE!! Most likely via video somethingorother...
Here's a video for you today that shows off how she plays with stuff these days.

Annelise video

5/15/20 - First Solid Food!

Here's a fun update! Annelise had her first babyfood today, sweet potatoes, mixed with her formula/breastmilk combo through her g-tube. No signs of it bothering her tummy at all yet.  The plan is to check for food intolerance one at a time for the ingredients that are in a pre-made mix of blended food.  It feels like there are about a bazillion ways to feed a baby with a g-tube.  We have friends who stay on formula for years and years... friends who use a packaged blended food product like we plan to use.... friends that just take the food they use for the whole family's meal and stick it all in a blender... or a mix of all those things.  As we are starting out, I am hoping that maybe real food will change the amount of gas bubbles that bother us all day long.  If I find that I can fit blending our own food into the weekly activities, I'm interested in trying it out in the future.... for now though, I can't even find the time to clean off the dining room table! So I'm trying to set us up for success by taking baby steps. 😁👍
Soaking in this healthy time with our precious girl as we get ready for her 1st BIRTHDAY!  My big plans for her half bday were messed up by a UTI, so specifically praying for UTI and shunt malfunctions to stay awaaaaay. Thank you all for continuing to keep our girl in your hearts and pray for her and our family.  This is the part of the post that is hard to write just because "grateful" seems like such a little word for such a big feeling. My heart is so grateful overflowing for God's goodness through the hardest year of my life, and the blessing of this time to get to know and love on our sweet girl!  Words don't seem enough.  I'll leave you with some photos!

5/12/20 Virtual PT

Annelise had a virtual Physical Therapy appointment today.  So now we have PT and OT weekly, both via Zoom for now.  I'm excited to get more ideas about how to help Annelise grow those muscles!
She has low muscle tone pretty much all over.  We are working toward the goal of sitting unassisted.  The point is to make it fun, so no matter how long it takes for her to get there, we'll enjoy the journey.
The casting of her feet continues to be put off as we are still trying to stay at home as much as possible.  I'm so lucky to get to spend the day with this babe, she's just amazing.