check out our facebook page

Life is crazy busy, and I've had a bit of trouble keeping up with both the blog AND the Facebook page. As much as I'd like it to be the other way around, Facebook seems to be easier for me to update quickly. So...for now, check out our Hope for Brooke page there to keep up with the latest on Brooklyn. Lots coming up for our little heart warrior. Pre-op heart cath this week. Fontan (her third and final planned open-heart surgery) scheduled for March 21. Updates will be posted frequently to Facebook. Follow us there! And I will let you know if I plan to drop the blog altogether. Not ready to do that yet. :) Thanks!

Boo is 2!

This is my first moment alone today. And all of the memories have come flooding back. Along with that flood of memories, tears, tears, tears of gratefulness flow. 

Exactly two years ago at this time, I was finally in the NICU at St. Louis Children's Hospital (SLCH) with our sweet Brooklyn Hope. When I delivered her six hours earlier at Barnes-Jewish, I watched from across the room as a dozen medical staff carefully and thoroughly tended to our babe. They let me hold her for 15 minutes before they had to whisk her away to the NICU so that they could immediately administer a drug to keep the hole in the wall between the chambers of her heart open...and essentially keep her alive. In this photo, she's in Daddy's arms for the first time, in the NICU, at 5- or 6-hours-old.

Today, here we are two open-heart surgeries, two heart caths and too many follow-up appointments, speech therapy and physical therapy sessions to even count, celebrating our sweet babe's second birthday! Wow. What a journey. 

As it tends to do, time has passed ever so quickly. To sum up our lives with Brooke lately, we are enjoying this sweet spot. Brooke is doing so, so well overall. Words cannot even express how grateful we are for that. She is silly and sweet and strong. She loves her bear, paci and warm bottles at nap and bed time. She loves to imitate her big sisters--the good, the bad and the ugly. ;) She loves to squeal in delight when her daddy walks in the door. She loves to hang close to Mommy most all of the time. She loves to dance, play with blocks, kick the ball and swing at the playground. She loves, loves, loves playing mommy to her dolls. She loves animals, especially dogs twice her size. She loves order and lining things up. She loves to point to all of the men in the Bible and call them "Jesus." :) She loves pizza, mac and cheese, yogurt and hummus. She loves to say "no" and "poop." Thank you, four-year-old sister. ;) Her personality is hilarious. Her facial expressions make us laugh. And her grin. Oh, that grin. It gets me. every. time.

As for a long overdue update (like I said, we've been enjoying our sweet spot)... Brooke's last cardiology check-up in St. Louis was in mid-July. Along with her typical check-up with cardiology, we also accepted the invitation to be part of a new Cardiac Neurodevelopmental Clinic at SLCH for kids like Brooke who are at risk for developmental issues. We met with an occupational therapist, a psychologist, our cardiologist, a neurologist, a pediatrician and our dietician, all in an effort to assess where Brooke is developmentally and determine where she may need therapy or other follow-up. It was a looonnnnggg day of appointments. But, thankfully, those appointments confirmed for us that Brooke is right on track in nearly every area of development. Praise God!

As part of her assessments, we discussed her slight speech delay and were encouraged to follow up in three months.  In the last few weeks, Brooke's speech (vocabulary and enunciation) has expanded/improved dramatically. It's so fun to hear her say each of our names as well as point to herself and say, "Me. Brooke." :) We still have some obstacles to overcome with feeding/eating and will be working with some specialists at a feeding clinic soon to address those issues.

Her cardiology check-up as part of those appointments in July went very well also. Once we got her to sleep during the echo, they were able to get a good look at her heart thankfully. Her heart function, including the shunt, is good, and her oxygen saturation level was in the low 80s, right where it should be. I must say it was quite surreal to watch Brooke walk down the hallway of the CICU and 7West where she spent so many days and nights as a very, very sick baby. 

God has been so good to us. He has been present in every moment of this journey with our sweet girl. In the joy and in the pain. In the good stuff and in the darkest of days. He knows our Brooklyn even better than we do. I'm grateful for that. I'm grateful that He has a plan for her better than I can even imagine. I'm grateful that how well she's doing brings such hope to the wonderful team in St. Louis caring for her and to other families traveling this road. I'm grateful to remember where we were two years ago, unsure if our babe would make it to much less through two open-heart surgeries. I'm grateful to be where we are now. Living a "normal" life as a family of five. Watching our two-year-old do very typical two-year-old things. Watching beautiful relationships develop between our girls. "Grateful" really doesn't even come close...

the birthday tailgate party 

with family and friends last weekend

enjoying some gym time this morning 

and cake (again) to celebrate this evening

little boo is getting big

Twenty-three months (+two days) old. Such a peanut but growing and thriving in so many ways. Vocabulary has taken off in the last couple of weeks. Personality is hilarious. Still adores her big, big sis. Becoming such good buddies with her middle sis. More of an update from summer, including her six-month check-up results from July, coming soon on the blog...

there are three guarantees with Brooke...

She will throw a fit when you change her diaper. 

She will go to her big big sis when Mama doesn't satisfy. 

She will eat every last bit of her ice cream cone, no matter the mess.

praising Him

On this day two years ago... I was five months pregnant, sitting alone in an ultrasound room at the hospital having just listened to "Sovereign" by Chris Tomlin over and over and over. John was home with our very sick oldest. I knew what I was about to hear from the doc wasn't going to be good, but I had complete peace. Only God can do that. The ped-on-call came in and gave me ultrasound results...and Brooke's diagnosis of HLHS. My journey as a heart mom started in that moment. Still takes my breath to think about it.

Two years. So much heartache. So many tears. So much joy. So much laughter. So much overcoming. So much prayer. She's thriving. I'm different, stronger. Our marriage is stronger. Our family is stronger. I'm more in love with Jesus than ever before. I know Him more deeply than ever before.

I can't quite lift my hands high enough in praise today for all He has done. He was good through every single moment of those two years. Every. One. Even in the darkest of the dark. He was good. He IS good.

We celebrated God's provision, goodness and faithfulness this morning with a bowl of whipped cream. Pretty sure our little lefty thought that was the best "ice cream" she's ever had.

bear and paci

Bear and paci. 

She's had both since she was born. 

She goes nowhere without them. 

She loves to have Bear right up next to her face. 

Soooo sweet. :)

buds

It's not always fun and games, but I just 
love, love, love the way these three 
love and adore each other. 
Such fun to watch their relationships grow.

adorable

I mean, seriously. So stinkin' adorable. And a hilarious personality on top of it. 

Makes it a tad difficult to get frustrated with the tantrums.

will you pray?

As John and I have celebrated the one-year anniversary of Brooke being NG-free, celebrated these sweet 18 months we've enjoyed with her and marveled, like many of you, at how well she's doing, my heart has been heavy for another heart hero's family all week long. Her name is Maddie. "Mighty Maddie" as she's known. 

Little Maddie was diagnosed in utero with Hypoplastic Left Heart Syndrome, just like our Brooke. Cared for by many wonderful folks at St. Louis Children's Hospital​, just like our Brooke. Loved so well and prayed for so much by her family and friends and even those who didn't know her, just like our Brooke. This past Sunday she celebrated nine months. Nine months of sweetness...and fighting for her life daily. On Monday morning, while held in her mommy's arms and holding her daddy's hand, Mighty Maddie went to be with Jesus. I don't know Maddie's family personally, but in the CHD world, there's something unique that connects all of us as parents of heart heroes. 

Probably much like you, I don't understand why some of these sweet babies, like our Brooklyn, survive and thrive and beat the odds every day...and some of them don't. The mystery is not mine to solve. I have zero doubt that God knows what He's doing and He truly does "work ALL things together for the good of those who love Him." (Romans 8:28) The joys, the tears, the smiles, the heartache. ALL things. Nonetheless, the passing of another precious heart baby and the unimaginable heartache her family and friends must feel absolutely breaks my heart. The reality is, it could have been us at any point in these last 18 months. And the reality is, we're never guaranteed another day with any of our babies, our kiddos, our loved ones, no matter their age or health.  

Will you join me in praying for Mighty Maddie's family? I know they would appreciate it, friends. And, if you're interested, you can read more about this precious girl on Facebook at: https://www.facebook.com/MightyMaddiesHeart?fref=ts.

18-months!

And today we celebrated 18 months of sweetness! Our little Boo loves dancing, watching and imitating her big sisters, swinging at the park and bouncing on the trampoline at the gym. She loves sleeping and eating--namely almond butter, hummus and strawberries. She loves books, Daniel Tiger, Boz the Bear and bubbles. She loves watching birds out the kitchen window with Mommy and "running" from Daddy when he plays chase. She keeps us laughing and keeps us on our toes. What a joy she is! Happy Half-Birthday, Boo!

another anniversary

Celebrating the anniversary of a huge milestone today. This cutie's been NG-free for one year! One year ago last night, much sooner than we anticipated, I pulled her NG tube for the last time. Seems like yesterday. Lots of hard work, two fantastic speech therapists, lots of love, lots of prayer, one big God...SO much amazing progress. On this day last year we were hoping, praying and trusting that Brooke would really take off with bottle-feeding and we wouldn't have to drop another tube. Today...she ate waffles, tons of strawberries, Cheerios, hummus, turkey, peanut butter, veggie straws, rice and steamed veggies. Without any trouble or hesitation. Seriously incredible, you guys.

no more PT!

After months of hard work in physical therapy, focused effort at home and lots of play time at the gym, this determined peanut met all (and even surpassed some!) of her gross motor goals. And she was officially *discharged* from PT yesterday! Another exciting milestone. We're celebrating...and praising God!

Showing off her walking and climbing skills for our therapist for the first time yesterday.
These stairs have long been one of her favorite parts of PT. So fun to watch her progress on them!

Our therapist, Earl. We sure think a lot of this guy. Brooke did *not* want to leave him yesterday. 

A little fun at the mall. That face!

Exploring on foot is SO much fun!

discharge anniversary

One year ago today Brooke was discharged from the hospital eight days post-Glenn (her second open-heart surgery). Eight days! 

Today we enjoyed the nice Spring weather and played and played at the park. Brooke even navigated walking in the wood chips for the first time. A big deal! She typically goes out of her way to avoid all outdoor surfaces other than the sidewalk. And, today, her sisters adore her, and she adores them, more than ever. Thank you, Jesus!!

17-months!

Sweet, smart, sassy and oh-so-determined to eat this bagel with only three teeth. 

This peanut is 17-months-old today!

what a difference a year makes!

What an incredible difference in a year! One year ago today our Brooklyn had her second open-heart surgery at just five months old. Today she happily played with her sisters, giggled at my kisses, entertained her Nana and Papaw with her silly personality, toddled everywhere and squealed in absolute delight at seeing her daddy for the first time in five days. I often shake my head in amazement at God's faithfulness and graciousness toward us. Thank you, Lord, for our sweet, amazing miracle...and for keeping her through it all.

walking, walking, walking!

So for the last few weeks we've been going to open gym time for toddlers and preschoolers at the local rec center one morning a week so Brooke could get more practice with her walker. We've had the walker since December, and she has slowly progressed from needing help navigating it through the living room to navigating well on her own to nearly running with it in the last couple of weeks as her sister "chases" her. :) So cute! Here's a video of her cruising with the walker just last Thursday...

And here's what happened over the weekend! Woohooo! Such a huge milestone for any little one but especially for our Brooklyn. We have been working hard in physical therapy a few times a month for several months and a lot at home and recently the rec center. So, so exciting! And she has progressed so much even in the last few days. She no longer prefers the scoot, which you see at the end of this video (taken on Sunday afternoon). She'd rather be walking! :) 

rocking, thinking, praying

I often snuggle and rock Brooklyn for a really long time before I put her to bed. I usually pray for her while I'm rocking. Sometimes I pray for others. Sometimes I think back to the hardest days when she was so tiny and things were more uncertain. Sometimes I just listen to her breath and thank God that I get to hold her and enjoy her today. Sometimes I think about, pray for and even cry for those mamas holding their babes in the CICU at St. Louis Children's Hospital.

Tonight? Tonight I did all of that. Especially the latter. Will you join me tonight in praying for those babes, those families and those amazing folks caring for them? Often such deep heartache on that 7th floor. 

God, hold them close. You know their needs, and You are bigger than ANY mountain they face.

joy in the grocery

Somebody LOVED Mom's super silly grocery cart driving this afternoon. Simple joys!

OT evaluation

This girl. She's a tough cookie. Our God. Well, He's amazing. Brooke had an OT evaluation today as a follow-up to her six-month eval. She just turned 16 months. She showed the skill level of a 20-month-old. Simply amazing given that research shows heart babies like Brooke often have neurological delays. And she would've "tested" even higher had it not been for her being sassy and refusing to finish a shapes puzzle.

Since her poor circulation prevents her from being out in the cold any longer than absolutely necessary, I brought some snow in yesterday for her to explore. Pretty sure she's over it. And so am I. It really is beautiful, but we're ready for some outdoor fun minus the layers and layers and layers! 

tired mama

This mama is wiped out tonight. A certain little person apparently didn't get that message and is STILL awake. Good thing she's cute.