Baker the Brave | Open Heart Surgery

We've had a crazy couple of weeks around here with Baker's surgery and wrapping up the holiday season. It's been 2.5 weeks since B's operation and while that's hardly any time at all, it also seems like it was ages ago. I think it's because life has picked up where it left off, like surgery almost never even happened. Baker has completely amazed us with his recovery - he spent 5 nights in the hospital and went back to life as we knew it, the noticeable changes being his emerging personality and heightened energy levels!

Doctors and other families who had gone through surgery before us talked about how fast these kiddos rebound but to see it firsthand is pretty amazing. We're so thankful for the team at St. Louis Children's Hospital and Baker's doctors here at home who all helped him have the best possible outcome. His repair looks great with only slight leakage around his reconstructed valves, which they'll continue to monitor for the rest of Baker's life. His heart defect usually only requires one surgery but should the valves worsen as he grows, it's possible he'd require another procedure years down the road but it shouldn't be anything to worry about now.

I posted to Instagram and Facebook during our hospital stay but wanted to document everything here, too, along with about 534256 more pictures... ;) This is long and there are a few pictures below that show his little body with tons of wires and tubes coming out so fair warning if you're not up for seeing those - just scroll on past!

Christmas 2017

The holiday season is coming to a close and we're all officially depressed over here! Like most, I really love this time of year and all of the things that come along with Christmas and I'm always a little sad to see it go.

We had the very best Christmas at home - just our little family of five. We had some redeeming to do after last year when I was newly pregnant and the stomach bug took us out one by one. This year, there was no sickness and we have so very much to be celebrating and to be thankful for. Our 2017 was quite the doozy to say the least so to have a peaceful holiday at home with my husband and kids was nothing short of magical. 

We kicked off the weekend by making cookies for Santa on Friday afternoon followed by a quick dinner out as a family (Chipotle because we fancy...) and then drove around a bit looking at Christmas lights. There are a few stellar neighborhoods around town and it was so fun to hear the girls in the back seat getting excited about the displays. We hung out at home on Saturday and had my cousin and her family over for dinner. The kids played, ate cookies and stayed up way too late.

We woke up to SNOW on Christmas Eve! I don't even think we got an inch but it didn't matter - everything was covered just enough to make it look like a white Christmas! I snagged pictures of the kids this morning since I knew they'd be too excited to sit still after Santa came to visit!

I think Gracyn was bundled up and outside by 9am to play. It was cold but my South Dakota heart loved it. It'd been awhile since we had snow on Christmas here in Kansas so it was fun for sure. We had our traditional spaghetti dinner followed by opening a few gifts. We always got to open a few presents on Christmas Eve as a kid and we've continued the tradition with our family!

I thought the girls would be up suuuuuper early on Christmas morning but it wasn't actually too bad. They were so excited to see what Santa had brought. Fingerlings! A Smart Watch! A scooter! They were spoiled, for sure!

We went to my cousin's house for dinner that night and spent an extra day off on Tuesday recovering and trying to organize all of our new goodies. 

I normally leave the Christmas tree and decor up until New Years Day which gives us a little extra time to enjoy this time of year. I'm very much looking forward to 2018 but trying to soak up the last few (uneventful!) days of what was a very trying year for us. We're so glad the girls are healthy and that Baker has stolen our hearts - Christmas this year just felt good - like we could breathe - and I'm so grateful for this family of mine.

Kindness is Cool

I meant to share this story last week while we were still in the hospital but the days got away from me. That's funny to me seeing as how we were literally sitting around all day long but it managed to happen! I'm trying to get caught up with work and get ready for Christmas so this week has been a little crazy but this is definitely worth sharing, especially this time of year.

Leighton :: Three Years Old

We celebrated Leighton's 3rd birthday on Sunday with a nice relaxing day at home. Not knowing whether or not we'd be back from St. Louis in time, we didn't plan anything elaborate and I made sure she knew we'd be celebrating whenever we got home from Baker's surgery. Luckily at only 3 years old, we could have gotten away with celebrating at a later date but I was soooooo happy that we made it back in time!

Baker the Brave | Before Open Heart Surgery

You knew it was coming, right? The post where I write a letter to Baker and pound out all my feelings about my baby having open heart surgery?

Open. Heart. Surgery.

Like, his heart will be stopped and he'll be kept alive by machines while a surgeon operates on his tiny little heart, an organ no bigger than his baby fist. And then, when the surgery is done, the machines will stop and if all goes according to plan, that little tiny baby fist-heart of his will start beating on it's own. Baker will wake up and get the breathing tube removed and he'll smile at us and after spending a few days in the hospital we'll bring him home as good as new. Sounds easy enough, right? Just take it one step at a time.

Baker :: Four Months Old

Happy F O U R months to our big guy! Another month come and gone and life with this boy is sweet as can be. He's still the chillest babe on the block and we love him dearly.

We had his four month well visit this morning and he weighs in at 12 lbs 9 oz and is 22.5 inches long.  Short and chunky! He's in 3-month clothes and we're quickly using up all of the size one diapers. He has a blowout almost once a day so he definitely needs to move up in size!

We've seen full-blown smiles this month, too! Oh man are they cute. My eyes well with tears every time I see that smile of his. They're coming more frequently but I have yet to capture a good one on camera! His whole face lights up and it's just the best. It's common for kiddos with Down syndrome to mile later than their typical peers and it was definitely hard to wait but so, so worth it. Can't wait to see them come more easily as he grows!

Baker is gaining more strength every day. He went all baby Hulk on me and was legitimately trying to sit up when I was taking these pictures! Look at him lunging forward! I couldn't believe it. We need to do better about him spending more time up off the back of his head. Poor dude has a flat spot developing since he favors his right side. I'm hoping it'll correct itself before we're told he needs a helmet!

Baker is starting to find that voice of his and will "talk" back and forth as he tries to imitate sounds. We usually have some really good conversations after he eats. A few weeks ago, he started refusing bottles (either offered by me or Justin) so he's been exclusively breastfed pretty much all month. I'm a little nervous about this considering he's starting daycare in February and will need to eat while I'm gone. We have some time to work on this and I'm curious to see if he goes back to taking one after surgery.

Speaking of surgery. Baker will be getting his broken heart repaired next Monday. It still doesn't seem real or that the time has come but we head to St. Louis on Friday to meet with the surgeon to go over the plan to get our little man all fixed up so he can continue to thrive. I'm feeling anxious and I have a to-do list a mile long to get done before we leave which is keeping my mind occupied so maybe that's a good thing. Since Baker doesn't get admitted to the hospital until Monday morning, we're doing one long day there and back on Friday for pre-op so we can come home and spend the weekend at home as a family. We're so thankful for grandparents who can help us out during this time - both Justin's mom and my parents will be looking after the girls as we go back and forth in the coming days.

Our little warrior has some tough days ahead of him and my own heart breaks knowing he has to go through this but I've seen time and time again how resilient these babies are when it comes to healing after an operation of this magnitude. Baker is so brave and strong and I'm so incredibly proud him.

Transitioning to the Crib | Newton Baby

This post is sponsored by Newton Baby. All opinions - and cute sleepy baby - are my own.

All of my babies spent their first weeks of life sleeping in the pack 'n play next to our bed. It's handy to keep them close for those middle of the night feedings and to check to make sure they're breathing 47 times a night. The girls were moved to their cribs for night time sleep around the 8-week mark but Baker managed to spend a little more time rooming in with us.

I was nervous bringing him home after he was born knowing he had a heart defect. He didn't have any issues while in the hospital and before we were discharged, we were educated on what to look should he begin showing signs of heart failure.

Sounds scary, right? Heart failure?! To my surprise - and relief - actual heart failure can be a gradual process and often times, symptoms may be managed by medication. But still! My baby could potentially go into heart failure! My desire (want, need, obsession - whatever you wanna call it!) to keep him close at all times was definitely real. 

Thankfully, Baker has never shown any serious signs of distress. He has great coloring, maintains his oxygen levels (even more so now that he's on medicine) and we're close to getting that broken heart of his all fixed up. There was one slight problem, though. 

Mr. Man is L O U D. From day one, he's been grunty and snorty; he squeaks and sighs in his sleep which means I'm constantly popping up out of bed to check on him, thinking he's awake. Nine times out of 10, he's still fast asleep and I was up for no reason. When he was around 3 months old, I decided it was probably time to move him to his own room so we could all sleep a little more soundly.