Merry Christmas!

Merry Christmas, all! During this season of celebration and throughout the coming year, I pray you know the peace and hope that only God can bring. No matter what season your life is in. He sure loves you so!

that grin

I love her adorable, two-toothed smile, but this sweet little grin? It gets me. every. time.

PT progress!

I'd say this is progress. BIG progress! 

Somebody loves the stairs. 

And somebody is getting a gate 

for the bottom of the stairs for Christmas. ;)

discharged

On this day last year we were leaving behind the comforts of this familiar place...

with this familiar view...

and taking this sweet baby girl "home" for the first time... 

We left the hospital that evening grateful, yet unsure. 

Grateful for where God had us. 

Grateful for how well Brooke was doing just 21 days after her first open-heart surgery at six-days-old. 

Unsure of what the coming days, weeks and months would hold. 

Unsure of caring for our fragile little one three hours from what had been home to us for her little life and those who had become family and provided amazing care and support 24/7. 

But, off we went, so very excited to be together at home home as a family of five.

Trusting that God would cover us in her care and protect her through the Winter months in anticipation of her second surgery in the Spring. 

First stop...our St. Louis apartment for an overnight stay before we headed home home the following day...

a heart hero

Every heart hero needs a costume and a cape!

sister love

On this day last year, after a 20-hour wait, we had our first photo as a family of five and these big sisters got to really meet their baby sis. Abby was completely smitten from the moment she laid eyes on Brooke. That day, and every time she visited Brooke in the hospital, she rubbed and rubbed and rubbed Brooke's little forehead. Got me every time. Still does. Emily? She thought Brooke was hilarious. Laughed every time she made the slightest movement or sound. :) And was fascinated with all the monitors and beeps as well as all the other NICU babies. 

It's been so sweet to watch these two love on their baby sister. So grateful they have each other. And so grateful we have each of them. 

fun at the orchard / pumpkin patch recently

happy birthday, little one ... an open letter to my Brooklyn

My Dearest Little Brooklyn, 

You're turning one today. Oh what a year it has been, sweet baby. You are a warrior, Brooklyn. You are sweet and happy and even a little bit feisty. You bring such joy to our lives, just like your two big sisters. And just like them, you are "fearfully and wonderfully made," special heart and all. Incredibly, He "knit you together in [my] womb and ordained every single day of your life." (paraphrased from Psalm 139) Every single day, Brooklyn. The easy ones. The hard ones. The fun ones. The sad ones. All of your days. 

Your life. Your little life has touched so many people already, Brooklyn. God has shown Himself faithful and mighty in power in so many ways. God used the prayers of many wonderful friends and family and the minds and hands of several amazing medical professionals to hold you up and spare your life. And through those same prayers, God carried your daddy and me through some dark days. There are lots and lots and lots of people who love you, Brooklyn. They are rejoicing with us today as we celebrate you, your life and all God has done. 

From the time we received your diagnosis four months before we met you, I believed God chose you, chose us, to walk this road and endure this trial for a purpose, or many purposes. Only He knows that full picture, but be assured, His plan and purpose are for your good, for our good, and are so much greater than we could ever imagine. 

"And we know that in all things, God works for the good of those who love him, who have been called according to His purpose." --Romans 8:28

God loves you so, Brooklyn. He is for you. And He is good. No matter the circumstances. My deepest desire for you (and your sisters) is that you come to know Him and His love for you at an early age, fall in love with Him and follow hard after Him all the days of your life. In Him, there is life. The only life worth living. 

I consider it an honor to be your mama, sweet baby, and I can't wait to tell you your story, the one that God wrote for you, someday. I have no doubt you'll see God's fingerprints all over your life. I can't wait to see what He does with you and in you in the coming days, months and years. 

Happy Birthday, Brooklyn Hope.

I love you more than I could ever fully express in words. 

Your Grateful Mama

the first of many hands to touch your sweet life

very proud mommy and daddy meeting you for the first time

birthday eve

One year ago on this date, the four of us (five, really :) woke up in our St. Louis apartment and spent the beautiful morning exploring the neighborhood. We took in the scenery. We enjoyed our big girls. We spent some time with my parents. We thought a lot about what the coming days would bring. At this very time that evening, John and I left our girls with my parents at our apartment and headed a couple of blocks up to Barnes-Jewish for my scheduled induction. We were so excited and ready to meet our baby girl. We were ready for the next step of the journey with our sweet heart baby. We received Brooke's diagnosis in June 2013, so for four months we had been talking, researching, learning, appointment-going, processing, preparing, praying... We were as ready as we could have been. And though we felt well-prepared, we had no idea just how difficult those days ahead would be. But God did. God knew exactly what was coming. And in all His goodness, He met us there with grace and mercy. 

Let us approach God's throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need. --Hebrews 4:16

on the sundeck atop our apartment building
just a few hours before we left for the hospital

one year ago today...moving in

On this Saturday last year our family was packing up and heading to St. Louis to move into our (hopefully) short-term apartment a couple of blocks from Children's. So many thoughts and emotions on that day anticipating Brooke's arrival in just a few days. Today? Today we left our heart baby and her sisters with a sweet and wonderful sitter and went on a date to the football game. Today one thought and emotion outweighs all of the others. Today, I'm grateful. So very grateful. 

I will give thanks to you, Lord, with all my heart; I will tell of all your wonderful deeds. I will be glad and rejoice in you; I will sing the praises of your name, O Most High. --Psalm 9:1-2

Brooklyn is doing remarkably well. Physically, she's pulling to her knees and also pulling to standing quite often now. Still scooting instead of crawling but we've gotten her to crawl in PT the last couple of sessions. Our therapist would like for her to develop those crawling skills in order to build upper torso strength and so that her hip joints don't "freeze" from all the scooting. Carpeted flooring encourages at least more of an attempt at crawling. Our hardwood on the main floor encourages more scooting. So, I'd say she's well-rounded when it comes to physical movement. :) 

Grateful for progress, for improved strength and for our physical therapist. 

Brooklyn smiles, claps and babbles all the time. Her first real word (back in late September) was "uh-oh" which she says so deliberately and with lots of facial expression. SO cute. She also says "ma-ma" and "da-da." Hard to say if that's babble or intentional at this point, but we'll take it! She loves when her sisters, her daddy or I come into the room. Lots of smiles, squeals, claps and scooting. So, so sweet! Her personality is coming out more and more. She is generally a very happy baby only fussing when she's tired or hungry...or when we dress her. Hilarious. This girl's gonna take after her big sisters, I think. She'd rather be in her diaper than anything else at all. 

Grateful for progress, for reaching milestones and for Brooke's sisters and daddy doting upon her like they do. 

We are starting regular speech therapy visits again this week to try and address Brooklyn's feeding delays. She still loves her bottles, but we haven't made much progress on anything else at this point. She loves to feed herself puffs but will not swallow them or any other solids. She favors spinach/peas/pears baby food. In fact, that's really the only thing she will eat consistently and without resistance. Not a bad favorite! :)

Grateful that Brooke loves her bottles and for wonderful speech therapists who love my girl. 

Brooklyn has adjusted so well to being around (and even held by) other people. She and her middle sister are even going to the children's program during my Bible study each week. She loves to watch and be close to the other babies. So much fun and such a big deal for her to be well enough that we are comfortable leaving her with other babies and caregivers in that environment. Huge deal! The ladies that teach and care for her are amazing.

Grateful for progress and for Brooke's teachers and their hearts for Jesus. 

Grateful!

crazy hair

Seriously! Adorable even with crazy bedhead. And, by the way, we love our Illini, but sometimes a girl just has to wear red in this land of Orange & Blue. Go Tops!

just a few fun pics

sweet sleeper

 "you gonna let me out?"

 no words...this one makes me smile so much

"what do you mean you ate all the fries?!"

"what? you didn't want me to re-organize the tupperware?"

fun at the park with sis

happy target shopper...like mama

11 months!

Four weeks from today this happy little pumpkin will be ONE! And, yes, we are savoring every. single. moment. She's scooting everywhere. Getting stronger and stronger. Working hard in PT twice a month and at home daily. Still not a fan of food but loves her bottles. Loves blocks, books and Tupperware. Great sleeper. Happy, happy baby. 

just a little longer

There are some nights when I just want to get her to bed so I can have some down time or even extra sleep. And then there are some like tonight when I sit in the chair an extra long time with her snuggled up on my chest, her soft, little cheek pressed into my neck, as I listen to every deep and sleepy breath. So grateful for these sweet moments. Thank you, Jesus.

standing

Went to get Brooklyn up from nap yesterday and she was STANDING in her crib...and quite proud of herself as you can see. :) Huge progress and huge milestone for this little monkey! Praise Him!

life is good

Life has been quite a whirlwind settling into new routines with school and Fall activities. Thus the long delay in posting. 

Brooklyn's cardiology check-up in mid-August went very well. Though she protested through both, her EKG and echo showed good heart function. Her oxygen level and heart rate were good, and, though she's still a peanut and probably always will be, she continues to gain weight and grow well. Our cardiologist, Dr. Lee, pictured below, said Brooke is doing so well overall. In fact, we don't have to go back for SIX MONTHS! Like, NEXT YEAR! What?! So amazing. We made time to visit one of our favorite places in the hospital, the rooftop garden, while we were there as well as the CICU. Everyone was delighted to see how good Brooklyn looks and how well she's doing. 

We are continuing physical therapy appointments every other week and do most of her PT work at home. We are currently working on getting her into the crawling position (trying to move her from scooting to crawling...which she hates), stretching out her tight hip flexors as well as supporting her in different ways--on a ball, on my knee, on her feet at a box or table--to build strength and balance. Though it's often hard work for her, she generally enjoys physical therapy. She has showed great gains in upper torso strength, leg strength and balance. She is scooting on her bottom everywhere. Though she gets anywhere she wants to go in a matter of seconds, progressing to crawling is important for her hip joint development and impacts the progression to standing and walking. So fun though to have messes all over the living room floor where this little peanut has been. :)

At Brooke's nine-month check-up, her pediatrician was amazed at how well she is doing overall. The only even slight concern he had was her lack of interest in eating pretty much everything I try to give her. He offered a feeding evaluation with a speech therapist, which we had last week. Brooke was a show-off for the therapist and ate better than she ever had. :) The therapist indicated that she is really only delayed by a few months with feeding and doesn't consider her to have any real oral aversion. Yay! And thankfully Brooke is still getting the calories and nutrition she needs from the fortified formula. 

I often say that if you didn't already know she had a heart defect and has had two open-heart surgeries, you wouldn't know...unless, of course, you saw her mid-line scar on her chest and/or felt the pronounced protrusion of her sternum. She is such a happy, content baby who loves to scoot everywhere, watch herself in the mirror, chatter, smile and laugh at her sisters, pick up tiny crumbs of food and pieces of lint, chew on everything...normal baby stuff. :) :) One of her favorite things? Swinging at the park...

To say we're grateful for how well Brooklyn is doing and how normal life seems at this moment would be a HUGE understatement. Praising God for His faithfulness!

nine months old!

This sweet little monkey is nine months old today! Not sure how that happened already! It has been quite an uneventful summer full of normal stuff...like trips to the park, play dates with friends, visits with family, trips to the library, water play, family vacation...all the fun things of which summer days are made. Ahhh, normal! :) 

We are so grateful Brooke is doing so well. She loves to sit and play (and scoot around on her bottom) on the floor. :) Loves her Jumperoo. Loves to smile at her sisters. Loves kisses from her daddy. Loves to snuggle with her mommy. Loves her bottles. Loves bath time. Loves to sleep. An all-around happy, smiley, chatty, growing and thriving baby! Praise The Lord! 

Brooke has physical therapy appointments once a week, then we work on things at home to help with core strengthening and skills like going from laying to sitting, getting into crawling position and eventually crawling. She is steadily gaining strength and working toward those major milestones. 

Our next cardiology follow-up in St. Louis is in a couple of weeks. Looking forward to seeing our SLCH family! We miss them!

Enjoying the water on our recent vacation...

\

Big sisters enjoying the water...and their baby sister in the water...

the day this journey began

Today I listened to our sweet Brooklyn "talk" non-stop. I mean non-stop. So sweet. :) I watched her sit and play in the living room floor, happily jump in her Jumperoo and smile and laugh at her silly sisters. This day one year ago seems like a distant memory in some ways. But as I think back over the days and weeks that followed, read some of my old blog posts and look through some of the photos from the past year, considering this day, June 25, of last year evokes such emotion. Much more than I expected actually. What an incredible journey. So many moments along the way stand out in my mind. Moments I will never forget. First receiving Brooklyn's diagnosis on Tuesday, June 25, 2013, was one of those. "Your baby has a heart defect called Hypoplastic Left Heart Syndrome."

One year ago today I went in to Maternal Fetal Medicine at our local hospital for a targeted ultrasound on Baby Girl's heart. As I drove to the hospital alone to have the ultrasound, I remember having such peace. Though from the beginning of the pregnancy, I sensed God preparing me for something. I just wasn't sure what that something was other than I believed it was a health issue with the baby. I didn't mention that to anyone other than my dear friend Nancy because I didn't want to worry anyone...but I needed to process it. John had been with me for nearly every ultrasound up until that point. We'd had many more than "normal" because of our history of loss. (Miscarriage in September 2009, ectopic pregnancy in December 2009 and ectopic pregnancy in June 2010. Those are other stories for another time. More stories of God's grace. :) Anyway, extra precautions were always taken throughout my pregnancies. So, another "extra" ultrasound wasn't out of the ordinary for us. On this particular day, John stayed home with our other two girls because Abby was very sick with a stomach bug. We agreed that dealing with that in addition to a busy 21-month-old in a small ultrasound room was not a good idea. So, I went solo. 

I remember the sweet lady who did the ultrasound. Her name was Kelly. As she did the ultrasound she pointed out all of the details of our sweet baby girl's little body. I asked her after she was finished how everything looked. I remember her sweetly saying that the doctor would be in to discuss the results. I vividly remember sitting in that room alone, for what felt like an eternity, listening to "Sovereign" by Chris Tomlin on my phone over and over again. No coincidence it was that song. I remember letting the lyrics soak in and having a complete peace about what was to come, though I had a feeling it wasn't going to be good news. But I had complete peace. 

The doctor came in and pulled up a chair close beside me. She gave me the diagnosis and sketched on a piece of paper what Baby Girl's heart looked like. I remember that sinking feeling in my stomach as she continued to explain briefly. I tried to process the news just given to me and wondered how in the world I was going to tell John this news. I left the hospital in tears yet still having complete peace. That's peace only God can give. I remember listening to "Sovereign" again and again. I called Nance to talk through what I'd just been told so I could process it a little more before I faced John with the news. After taking some extra time driving around praying and trying to process it all before I got home, I finally pulled into the garage, hesitating to even get out of the van, still struggling in my mind with how exactly I should tell him. I remember him coming out the door and meeting me in the garage. He was headed in to the office, assuming everything was just fine with the ultrasound. I told him it wasn't good news and there was something wrong with our sweet baby's heart. I remember leaning into him, holding each other closely, trying to process together the news we had just received. The next 24-48 hours were extremely difficult. Full of tears, wondering, research, conversation, research, tears, sharing news with our families... 

That's where the journey began for us. One year ago today. Life as we knew it was forever different. We became the parents of a "heart baby" in an instant. But God knew long before June 25, 2013, that we would receive news that day that would change our lives forever. He was knitting Brooke together fearfully and wonderfully and chose us to be her parents. What an honor and a privilege. 

This has no doubt been an incredibly difficult journey, but it's been a journey filled with God's grace and goodness. Evidence of His mighty hand is all over our story, her story. Evidence that He is, indeed, Sovereign. And He is good. Not because our sweet girl is doing miraculously well. He is good because He is God. It's His very nature. Thankfully, our circumstances, no matter what they are, never change that. He will always be good.

He was good when we first heard those words..."The left side of your baby's heart is severely underdeveloped. She won't survive without a three-stage reconstruction of her heart." He was good when we wept at the thought of losing our babe. He was good when we questioned what the future held for her if she did survive. He was good when we held her close in the hours before her first open-heart surgery. The most difficult hours of our lives. Six-days-old. So sweet and seemingly perfect. He was good when she came through that highly complicated, risky surgery remarkably well. He was good when we sat by her bed holding her tiny hand, praying over her, talking and singing to her, waiting for her to open her eyes after being under such heavy sedation and paralytic. He was good through all the tubes, wires and drugs our baby girl endured. He was good through the many, many sleepless nights we spent by her bedside, watching her and watching monitors, alongside the amazing nurses we had. He was good while we spent weeks and weeks away from home and away from our other girls. He was good while we prayed and waited and prayed and waited those weeks and months between her first and second surgery because we knew it was a highly critical time in Brooke's short life. He was good when Brooke came through her second open-heart surgery at five-months-old. He was good through the long winter days and months as we kept her home in an effort to protect our highly susceptible baby from all the nasty viruses. He was good all the nights (and days) we spent cleaning up vomit while she was on the feeding tube. He was good through all the speech therapy appointments, cardiology follow-ups and pediatrician visits. He was good through all of it. Even the most difficult days and darkest nights. He was good. And He IS good.

"Give thanks to the Lord, for he is good; his love endures forever." --Psalm 107:1

Feel free to look back in our blog archives if you're unfamiliar with Brooke's entire story. It's an awesome story reflecting an awesome God. And it's still unfolding...

please keep her as she sleeps

I put my baby girl to bed tonight in her own bed. In her own room. For the first time. 

Much emotion. Many tears.  

Other than the few nights our nurses talked me into taking a break and sleeping in the parent lounge or when John would take his turn bedside when Brooklyn was in-patient, my sweet baby has been no more than an arm's reach from me overnight in her short, but long, seven-and-a-half months of life. Such a huge deal, this transition. 

As I stood beside her bed tonight and prayed over her just as I have done with her and her sisters at bedtime from the time they were born, that prayer for protection and safe-keeping seemed to carry more significance than ever. And that prayer of thankfulness evoked more tears than ever. 

I am overwhelmed with gratefulness to be at this place. This place of normalcy. This place of transition. This place of trust and hope that everything really is going to be alright. That God has her. Whether she's in my arms...a few feet from me...or down the hall. He has her. 

In peace I will lie down and sleep, for you alone, Lord, make me dwell in safety. (Psalm 4:8 NIV)

sitting!

Look who's starting to sit unsupported...if only for a few seconds at a time!

 

And, oh, does this baby girl love her sisters...and do they love her...

looking back

Missed it by a few days, but one year ago on June 7, I was half way through my pregnancy when we found out by ultrasound that we were getting another sweet baby girl. We were so excited! As a result of that same ultrasound, my OB indicated that she'd like to get more pictures of Baby Girl's heart because she wasn't quite satisfied that she'd gotten a good enough look at it...not because she thought there might be a problem. She referred us to our local Maternal Fetal Medicine area for a "targeted ultrasound" on Baby's heart, which wouldn't happen for another couple of weeks. Two days after that 6/7 ultrasound, we were on a flight to Orlando with our Abby to extend a business trip of John's and take our big girl to the beach and to DisneyWorld for the first time. We had an absolutely fabulous trip with Abby. Little did we know of the incredibly difficult, yet grace-filled, journey on which we were about to embark when we returned home. SO very grateful God protected us from the initial news of Brooklyn's diagnosis until after that long-awaited trip with Abby. How deep the Father's love for us...

first haircut

Somebody had her first haircut earlier this week! Here she is just after the cut, drool and all. Somebody is also teething. :) More on how our sweet babe is doing very soon hopefully. How has it already been three weeks since my last post?! Crazy. Time really does fly when you're having fun...and boy are we! :)

bed head

Now that's some serious, oh-so-cute bed head!

freedom!

"The Lord has done great things for us, and we are filled with joy." --Pslam 126:3

As of last Thursday, May 8, we are officially free of the NG tube, and we could not be more excited! Brooke had a check-up in St. Louis that day, and we received the "official" green light to discontinue use of the NG tube and get rid of the feeding pump and pole. I turned those in this past Tuesday. Woohoo! Needless to say, Brooke has taken off with bottle-feeding. I pulled the tube on Sunday evening, 4/27, to start the "trial" period, and we've never looked back! This is WAY faster than we ever expected to get rid of the feeding tube. We were settled in to our new "normal" and had adjusted quite well to dealing with the tube, pump, pole, feedings, etc. Wow has God shown Himself mighty--once again--in Brooke's little life! Seriously amazing. 

So, what does being free of the feeding tube really mean? It means our baby girl isn't tethered to the feeding pole for most of her waking and nearly all of her sleeping hours. It means that we have much more freedom to do simple things like carry her around the house and move her from place to place with ease. It means that she spends a lot less time laying in her swing (while on a feed) and a lot more time playing on her activity mat, on the floor with her sisters, in Mommy's and Daddy's arms. It means that we have much more freedom to leave the house for typical things like errands, groceries or even going for a walk or to the park to play. I did those things before but it was definitely a lot more challenging to take the feeding pump and bag along and keep her on schedule with feeds. Bottles are WAY easier to manage, as you can imagine. No feeding tube means that I don't have to carry a stethoscope, syringes, pH strips and the like in case I need to check placement of the NG tube in her tummy. It means that Brooklyn no longer needs speech therapy because she has the hang of this bottle feeding stuff (which is actually bittersweet because we miss our Jeanne). :) It means that she finally gets to sleep in her pack and play rather than upright in her bouncy seat or swing because of the continuous overnight feeds she was on previously. It means that we're as close to "normal" as we've ever been with our Brooklyn. A. ma. zing!

And more good news. She checked out well overall at her appointment. So well that we don't have to go back for another check-up until August. Three months! So exciting. And SO strange. I must admit that it makes me a bit nervous to know that we don't go back until the end of our summer break. We've been visiting St. Louis at least twice a month since last July. It's comfortable. It's like home. And now we don't need to go back until August. We are so very grateful for sure. But I'm nervous! :)

These last few weeks have been fabulous. The new-found freedom. The normal. I'm not quite sure what to do with myself, but I'm sure enjoying the freedom with my baby girl. And, oddly enough, I feel like I'm fully enjoying my two big girls again, since last October. Thank you so much, dear ones, for praying for Brooke. You make a difference! 

We'd love for you to join us in praying for Brooke's physical strength and development now. We will be starting physical therapy this week to help her catch up on some milestones like rolling over well, sitting up, etc. We knew all along that these things would likely be delayed given the nature of her surgeries and recovery. Now we're at a place where we can focus on her strength and movement. Honestly, not a big deal compared to all we've been through with her heart! :) 

Man, I just can't get enough of this sweet face...

church as a family

Big day for us! First Sunday morning at church as a family of five. Welcome to FCC, Brooke. You're gonna love this place, too! And, yes, that sweet little face is STILL tube-free! Update on that coming soon!