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.