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.
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
