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.

Thanksgiving 2017

Finally getting around to recapping our Thanksgiving last week! It was very low key, which isn't the norm for us. We're usually traveling either up to South Dakota or down to Oklahoma to spend it with family but with Baker's surgery quickly approaching, we thought it was best to stay home and keep everyone as healthy as possible.

We (and by "we" I mean Justin...) cooked up a whole Thanksgiving feast for our family. Just the five of us. Fifteen-pound bird included.... That's a whole lotta meat for basically two people. We still have some leftover in the fridge!

The kids got up early so we made breakfast and watched the Thanksgiving Day parade. The girls were very concerned that they'd miss Santa at the end and spent the entire morning asking when he'd show up.

Photo {Almost} Every Hour | Tuesday

This is kind of a sorry excuse for a blog post because my "Photo Every Hour" didn't pan out the way I planned. Actually, I take that back. This post very accurately depicts our days around here...

I start out strong...

6 AM | quick snack for the babe

7 AM | up for school with minimal whining

8 AM | preschool drop-off fuel

By 9 AM, I'm feeling good about life and set Leighton up with her songs while Baker naps and I try to work for a bit. She's been super into watching music videos on YouTube. Sometimes they're inappropriate (which is why she watches in my presence so I can reroute if I hear an F-Bomb or two...) and sometimes it's "Shake It Off" over and over and over again...

9 AM | show me how you werk werk werk werk werk

That lasts approximately 17 minutes until I have my assistants helping me send emails...

10 AM | sup bro

11 AM is missing because it involved leaving to pick up Gracyn from school and returning home to quickly shove lunch in the girls' faces before B and I left again for his evaluation with the therapists at our local infant development center...

12 PM | finally got the little dude dressed...

1 - 2 PM? Also missing, but the evaluation went great! Time to scoot home and pick up the girls (we're SO thankful for our neighbors who've stepped up to help me out more times than I can count!)...
 

3 PM | tired boy

Uh... what time is it now? Between afternoon snacks and tantrums and no naps and work I don't even know what I'm doing half the time. But LOOK! Another picture of the baby! Let's call it 6 PM...

6 PM | first bottle in 10 days!

^^ Silly boy has been boycotting bottles the last week or so. It's cute except when mama has a Saturday night out planned and spends the day worrying if he'll starve while I'm gone. No worries, though, we both survived but I'm still not sure why he stopped taking them all of a sudden. Homeboy must realllllly like the boobie. ;)

Life after 6 PM on this fine Tuesday? I had lost all control. We did the dinner-time hustle, the girls REFUSED to help me clean up the playroom which resulted in them being "grounded" for the first time in their lives, Gracyn asking if I still loved her (I do) and Leighton calling me a "mean mommy!" We had a talk about being good listeners and bad attitudes which I'm sure I'll have to revisit in the morning when they start asking for tablets and phones and television and forget the whole grounded part of the conversation...

I won in the end, though - the girls were in bed by 7:25 and I got caught up on a few things while watching the news and eating ice cream.

Wednesday, I'm ready for ya... :)

Hey Friday

One of these days my life won't feel so crazy, right?! My blogging game has been seriously lacking recently but by the time I actually get to sit down at night all I feel like doing is watching TV or mindlessly scrolling through my phone until I pass out. That, or I have Baker attached to me which isn't conducive to typing out a bunch of random thoughts.

{ONE}

via

We officially have Baker's open heart surgery scheduled. Our sweet boy will getting his repair on December 11th at St. Louis Children's Hospital. I've been trying to keep it together but I've been pretty emotional this last week with most of my feelings coming across as stressed to the max.

I had a rough day with the kids on Monday afternoon following a long appointment for Baker and ended the night feeling very overwhelmed. I've teared up several times when I'm not expecting it - driving in the car, answering an email for work, etc. and have to stop myself from thinking negatively.

We'll visit St. Louis the Friday before surgery for Baker's pre-op appointments and consultation with the surgeon. We expect Baker to be in the hospital for at least 5 days (although some warriors are out in as little as 3 days!) and we'll be hoping and praying we're back home in time for Leighton's birthday on the 17th. The most important thing, of course, is making sure Baker recovers well so we can get him home as soon as possible.

{TWO}

I recently signed up for Grove Collaborative to receive all-natural household cleaning supplies via a monthly shipment. I'm not big into monthly subscriptions or anything like that but I snagged a deal and a trial for free shipping so we're giving it a whirl! You can try it, too, by clicking here and getting $10 towards your purchase when you sign up! You can choose from a variety of brands like Seventh Generation and Mrs. Meyer's and prices are comparable to good old Target. Most importantly, you can control your shipment and cancel at any time. I'm most excited about the holiday-scented hand and dish soap heading my way just in time to start decking the halls!

{THREE}

I did it. I went all Chip & Jojo for Christmas stockings for the kids. They'll arrive just before Thanksgiving and come November 24th, we're getting all sorts of festive up in this mother.

Here are the three I got... now I just need to decide which one belongs to each kid!

1 // 2 // 3

{FOUR}

I have a date with my cousin on Saturday night for some much needed girl time sans husbands and kids. Sorry, peeps. We love you but PEACE OUT. For a few hours, anyway...

via GIPHY

{FIVE}

We're staying home for Turkey Day in an attempt to keep Baker and the girls as healthy as possible leading up to surgery. It'll be nice to lay low but we have every intention of cooking up a bird and all the fixings!

via GIPHY

Oh, and I might just start blogging and communicating via GIFs only - there is literally one for any scenario in life. Ha!

Happy weekend!

Friday Things

What a week!

{ONE}

Potty training might the worst part of motherhood. We originally tried potty training Leighton back at the beginning of September. I really wanted to try and get it done while I was on maternity leave but girlfriend was just not having it. We made it one awful day with tons of accidents and zero successful trips to the bathroom. 

I still think she was ready at that time but she is one stubborn little girl. We put her back in diapers and spend the next two months psyching ourselves up to train FOR REALZ ahead of her third birthday. 

We were running low on diapers so we decided to start the process again last Friday. We've had several battles back and forth since, including Leighton's lowest point in life on Monday morning (she screamed at me for a diaper for a good 30+ minutes, dancing around and in physical pain because she had to pee so bad yet refused to sit down and go..) but I'm so happy to report that she's doing great now! We've had very few accidents and she's using "but I have to go potty!" as an excuse to get out of bed at night so I'd say we're on the right track.

Leighton, I love you, but I never want to potty train you again.

{TWO}

Chip and JoJo are at Target, ya'll. Have you seen it?! Did you go!? I haven't been to Target in, like, 9 days or something absurd like that so I have yet to browse the collection in person but I've been eyeing somethings online, mostly holiday decor that Justin refuses to acknowledge before Thanksgiving...

Of course I don't need any of these things but it's Magnolia! I need to get something..

{THREE}

One of the things I wanted to do after Baker was born was say “thank you” to my doctor and her staff for not only catching Baker’s heart defect but for also offering up resources and knowledge and support when it came to dealing with a prenatal Down syndrome diagnosis.

We had a very positive experience but unfortunately, that’s not always the case. So many women I've met, either online or in person, describe receiving their baby's diagnosis - whether prenatally or at birth - as a very sad, scary, horrible experience. It breaks my heart to hear their stories so I’m determined to do my part to change the conversation.

My doctor's practice features families on their own blog from time to time so I had reached out to them and asked if they'd be interested in sharing our story, hoping it'd be a way for other mamas to feel connected should they find themselves in a similar situation. I also wanted to let my doctor know that she had my permission to share my contact information with any mom or family she had in her office receiving the same news we heard back in May. Read the interview here. :)

 {FOUR}

 This video was shared in one of my Facebook groups and I loved every second of it...



{FIVE}

Because it's Friday and I went a whole blogpost without posting a picture of my kids... An "outtake" from our family pictures. It might be my favorite...

Happy Weekend!

Baker :: Three Months Old

Baker Dee is 3 months old, officially out of the newborn stage and just a regular old baby now. Cue all the mama tears! Why does it go so fast? I usually tend to agree with the phrase, "the days are long but the years are short" but this time around, even the days are flying by.

The second half of last week was a little tough so I definitely still have my moments when I feel D-O-N-E - the kids bonkers thanks to some lingering Halloween highs and we all had a few rough days attitude-wise - but I blinked and we had miraculously made it to another weekend. Just like that, Baker was another week older.

Halloween 2017

Finally getting around to recapping Halloween! It was nice and chilly this year - it reminded me of trick-or-treating in South Dakota as a kid - so we weren't out too long but the girls still managed to get buckets full of candy.

My parents were in town so they stayed back at the house with Baker and handed out candy to the kiddos that stopped by. Our very own Waldo had a great first Halloween, napping away in the swing... 

Family Pictures 2017

Anytime we can get family pictures scheduled and get in and get out in 30 minutes is a win in my book! And bonus if a few of the photos turn out! ;)

We were introduced to Joe by one of our neighbors and he did a great job capturing our crew last week. That's another plus - he took our pictures on Sunday night and sent me some edited proofs by Wednesday! Go, Joe!

We had Baker's newborn photos taken in August but I wanted another set to use for our Christmas card, much to Justin's delight. Ha! He's a good sport and humored me. The kids cooperated for the most part, Leighton even started smiling towards the end. I'm so glad we had them done. Now if I could just get my act together and print them out and update some of the frames around the house!

Welcome to Holland

When I first started researching Down syndrome and connecting with other moms who had experienced a prenatal diagnosis, an essay called "Welcome to Holland" kept popping up in blog posts and articles. I didn't pay much attention to it at first but after seeing it repeatedly mentioned or referenced, I gave it a read.

Honestly, I didn't really "get it" until after Baker was born. It's a story likening having a child with special needs to planning an amazing vacation to beautiful Italy only to wind up in Holland, a gray and dirty place. Instead of things going to plan and realizing your dream, you have adapt and find beauty in the unexpected. Mourn the loss of what you thought your life would look like and form new dreams in its place. Once you start to do that, you realize "Holland" is a magical place with beautiful things like tulips and windmills and Rembrandts.

shirt from littlest warrior

We have our own little personal tour guide in Baker. I've mentioned he's amazing, right? ;)

Life Lately

Man, October is flying by. We've been keeping busy between work and appointments and enjoying the weather - it finally feels like fall around here and we're loving every minute. Time to recap life. I've tried to sit down and write this post for, like, the last 4 days so it's long overdue. Get ready for a whole lotta randomness... ;)

The extent of my indoor Halloween decorations... ha! I wanted to spruce up the mantel and go all farmhouse chic a la JoJo Gaines for fall but 5 pumpkins and a banner from the Target Dollar Spot will have to do this year...

Down Syndrome Awareness {Week 1}

I blink and the month is a third of the way over! I really don't know where my days go while I'm stuck in the trenches trying to keep three little people alive. It's all a blur, really. I need to start thinking about getting the girls' Halloween costumes put together because it'll be here quick. I am proud that I've started Christmas shopping, though! Small wins!

But before Christmas gets here, I want to recap week one of October and Down Syndrome Awareness Month (even though we're half way through week 2!). I've been sharing on Facebook and Instagram but I've also been learning sooooo much from other families in the Ds community who are sharing their own pieces of information! Lots to learn and lots to share!

First things first, what is Down syndrome?

Baker :: Two Months Old

Another month down! This one wasn't as jammed packed full of doctor visits as month one but we still had our fair share of doctor offices. I've heard through the Down syndrome slash special needs grapevine that appointments will taper off eventually but for now I'm still grateful we have lots of watchful eyes on our guy.

At two months old, Baker weighs in at 9 lbs 8 oz - that's a whole four pounds over birth weight! Sayyyyy, what?! Oink, oink baby.

Father + Son {and a Giveaway!}

When I was pregnant with Baker and we told people we were having a boy, I had several mom friends tell me to prepare for a love and a bond unlike anything I'd ever experienced before. I thought it was a tad weird seeing as how we already had the two girls - I was on my third baby and knew without a doubt that I had more than enough love to go around.

I mean, how different could it be?!

Enter Baker Dee. From day one, this boy had me wrapped around his tiny little finger. I can describe the three facial expressions I see from him at the start each nursing session and I can tell you the exact moment he looked at me - like, really looked into my soul - for the first time as I promised I'd be his advocate and protector. The mother/son relationship is the real deal, ya'll. I, of course, love each of my children with every fiber in my body so it's hard to describe the differences between mothering the girls and becoming a mom to this sweet little babe but they're there. Maybe it's because he is my first son and maybe it's amplified by the fact that he has special needs, I'm not sure, but one thing is certain - I freaking love this boy.

I also love watching Justin interact with Baker. Justin was made to be a father to his little girls. He is so good with them and they sure do love their daddy but watching him with Baker, his son, has been so special.

October | Down Syndrome Awareness Month

Where did September go!? I mean, really. It's October 1st which means maternity leave is over (excuse me while I cry...), Baker is almost two months old (excuse me while I cry some more...) and the unofficial start of the holiday season is upon us (excuse me while I start my online holiday shopping to cope with my emotions...).

Tears aside, the whirlwind that has been our life these last few months quickly led us to October which also happens to be Down Syndrome Awareness Month. We're the new kids on the block when it comes to raising a child with special needs so I'm super excited to have the opportunity to learn more about Down syndrome as well as have the chance to educate others on what life with Down syndrome looks like. 

Spoiler alert: it looks a lot like your life. 

32

I turned 32 years old on Monday. I love my birthday and don't fret too much about turning another year older. Not yet, anyways! 32 seems older (like, basically mid-thirties!) but I'd say I still don't feel a day over 30... ;) That's good, I suppose - you're only as old as you feel, right?!

Justin had to work but my parents and my brother were still in town from the weekend and we ended up having the best little day with the kiddos!

Step Up | 2017

 What a weekend! I shared on Instagram (and Facebook!) that it's hard to find the words to describe what it's like seeing your family and friends and neighbors and coworkers come together to support your new family of five and the special little boy we welcomed into our world just seven weeks ago.

Five on... Saturday

Meant to post yesterday but life got in the way and another busy week came to an end! Justin was out of town for work so my mommy came to town to help me for a few days. She stayed with the girls while I ran Baker to a couple of appointments, mopped my floors and even cooked dinner one night. A saint, I tell you. 

Justin made it home Thursday night in time for me to scoot on over to my next door neighbor's house to help celebrate her birthday. It was a nice little break after wrangling the children all week!

{ONE}

Baker had a follow up with the audiologist on Monday. He passed the newborn hearing test in his right ear after he was born but failed in his left ear twice so we were sent to a specialist to check it out. He was actually showing mild to moderate hearing loss in both ears this week which explains his ability to sleep right through things like the vacuum cleaner and his sisters screaming at high pitches!

The Official Diagnosis

It might seem silly but after Baker was born, no one specifically told us he had Down syndrome. At least, not right away. We had been waiting months to finally meet him and find out for sure and I figured we'd just know one way or another the moment he was born. Like we'd be able to tell just by looking at him.

Maybe it's because we already knew the chances and all of the nurses and doctors were aware of our situation. Maybe it was obvious to them when he was born so they didn't think to tell us directly, "Your son has Down syndrome." but I was sitting in the recovery room after my c-section and suddenly remembering to ask about it. I had seen him for just a couple of minutes before he was taken to the NICU and Down syndrome wasn't even on my mind at the time.

For the love of Friday...

Another week gone. This means I'm that much closer to the end of my maternity leave which makes me full-on depressed. Not that I should complain since I'll still be working from home for the time being but come October, I'll have to physically turn on my work computer and answer emails and things like that. I'd much rather be snuggling a baby all day, thank you very much.

Until then, though, I have big plans to enjoy September which is arguably the best month of the year. The weather cools down, the leaves change color and we end the month celebrating my birthday! Woo! The first week of this glorious month was a good one and I'm sure the rest will follow suit.

{ONE}

Baker turned ONE month old on Monday and his belly button stump finally fell off. That meant this boy got to enjoy his first official bath at home! Those big sisters were all too eager to help out but the little man wasn't so sure... I mean, look at his face! He didn't cry and only fussed a little so I'd say it was a success.

Girls & Dresses | Dot Dot Smile

Girls and dresses. They kind of just go together, right? We're fully submerged in the girl world over here and even though we recently added a little brother to the mix, our lives are still very much filled with different shades of pink and daily emotional rollercoasters thanks to these sweet sister girls of mine.

We were recently introduced to Kayla and Dot Dot Smile and when I told the kids that they were going to get to try out the most fun and twirly dresses in all the land, their girly hearts rejoiced. They were so excited!

Baker :: One Month Old

O N E  M O N T H

Say what!? So hard to believe but our little man has been with us for one month already. It feels like it's been days. Not an entire month. In true mom fashion, I can't remember life before this boy joined our family. We're all smitten although obsessed might be a better word.

blanket // monthly sticker

Baker's Newborn Photos

After I first shared Baker's story earlier this summer, we received emails and messages from so many wonderful friends and family members wishing us well and letting us know that they were keeping Baker and our family in their thoughts and prayers. I even got a few Facebook messages from total strangers who had come across my blog and wanted to either share a story or resource or just thank me for being so open about Baker and his diagnoses.

One of those people was Amanda from Amanda Nichole Photography. Amanda went to college with my cousin years ago and when she read Baker's story, she contacted me and asked if she could take his newborn photos. She mentioned she normally does one or two sessions a year for a family who is facing financial hardship or other extenuating circumstances and she wanted to do this for us as a gift.

Life Lately

Playing catchup on the old blog today, trying to clear my camera roll (to make room for more baby pictures, I'm sure of it..) and share a little bit about what's been happening in between all of the newborn snuggles over here! Life continues to chug right along, Baker is almost a month old which is freaking insane and those older two girls don't slow down either!

We've been spending as much time as we can outdoors before the weather turns cold. Come cold and flu season I'm sure we'll be holed up like recluses in an attempt to keep Baker healthy prior to heart surgery. The weather has been fantastic lately and it helps wear the girls out a bit before bed.

Step Up for Down Syndrome

Prior to getting the genetic test results regarding Baker and his Down syndrome diagnosis, Justin and I had met with the director of the Down Syndrome Guild of Kansas City. Amy was kind enough to give us a "welcome basket" full of literature and pamphlets related to Down syndrome along with a few new outfits for our boy. She was calm and reassuring and knowledgeable and answered all of our silly questions. Questions like, what is the correct terminology to use when talking about Down syndrome? How do I reference the diagnosis without sounding derogatory towards Baker or insensitive to others? What is the best way to educate others about Down syndrome, especially while we're still learning ourselves?

Most importantly, how do I make sure this diagnosis doesn't define Baker and show people it's merely something he was born with, not something that he IS?

Bumpdate :: 40 Weeks

Ok, so not an official bump date since the baby is three weeks old but I couldn't help but reminisce on his official due date today!

Five on Friday | Life With Baker

We've survived our first full week at home with our sweet boy!

He's still pretty sleepy and we typically need to wake him up to eat every 3 hours. We're doing a combination of breastfeeding, bottles of pumped milk and formula as a means to make sure he's gaining weight like he should these first few weeks. I'm hoping as he grows that we'll be able to move to a nursing-on-demand type of routine but we'll just have to wait and see and read his cues!