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!

big strides!

Brooklyn has made BIG strides in bottle-feeding this week since I pulled her NG tube on Sunday night. Praise God!!! He is truly showcasing His power, once again, with our little heart warrior's life. We have thoroughly enjoyed the freedoms that come with not having to be concerned with the feeding tube and pump. 

I've been working closely with our incredible team (our speech therapist here + our cardiologist, NP and dietician in St. Louis), and we are all excited about our babe's progress with bottle-feeding. We would love for you to agree with us in prayer that Brooklyn continues to take more and more volume with each bottle and continues to make good, steady progress. We are hoping and trusting that this trial turns into a permanent change. It's possible if we continue on this path of progress. Thanks, once again for lifting us up!

six months old!

No more free rides around here. You're six months now. Time to start pitching in with the laundry. :)

Happy Half Birthday to our little heart warrior! It's been six months, and, in many ways, it seems like a lifetime. God has shown himself mighty in your little life. I can't wait to see what other big, big plans He has for you. We love you beyond measure and are so grateful for you, Brooklyn Hope. You are a gift!

loving the bottles

Turns out that our sweet babe is a HUGE fan of having her NG tube out! :) She's had a great day with bottles. Thank you so much for praying. Keep it coming! We still have much progress to make, but we are thrilled with how far she's come in just a day! As a dear friend said this morning..."God is showcasing His power again!" Yes He is!! And just look at this adorable tubeless face! :)

NG-free trial

Wow! I can't believe it's already been over two weeks since our last follow-up appointment. Brooklyn checked out well. Praise the Lord! Life has surely been happening since. And THAT is the best news! We are loving being out more and more and enjoying the simple pleasures of life...taking walks in the neighborhood, taking big sisters to the park, going to the grocery, etc. It was a LONG winter!! :) 

As far as her check-up back on the 10th goes, Brooke's chest x-ray looked good. Echo looked good. Numbers looked good. She looks good. :) Our next check-up in St. Louis is in early May. So strange not to be going back every other week! Woohoo! 

So, for the prayer requests... 

Tonight (Sunday) I pulled Brooklyn's NG tube, and we are giving it another trial run for the next day, maybe two, without the tube for feedings. Typically, Brooklyn gets a vast majority of her calories through the tube during her continuous overnight feed. She loves bottle-feeding for the most part (and takes four per day currently), but she just hasn't  taken the volume (and calories) she needs overall.

In working with our team (speech therapist, cardiologist, NP and dietitian), we agree that it's best to give bottle-feeding a try for an extended period (1-2 days depending on how she does) without the tube in place.  

Will you pray that our sweet babe just takes off with these bottles in the next day or two? 

Specifically, please pray that...

*She learns quickly what it feels like to be hungry

*She understands that bottles can satisfy that hunger

*She maintains a positive association with bottles especially throughout this trial

*She takes significantly more volume than she has thus far. She averages about 30-35 mLs per bottle. This is a good increase from even previous weeks, but it is still only about 1/4 of the volume that a healthy almost-six-month-old would typically take. 

We have high hopes as usual for our sweet baby girl. We would love to get rid of the NG tube sooner rather than later, but we know that, as Brooklyn's speech therapist says, "This is a marathon, not a sprint." Yes. Yes it is. Speaking of our speech therapist, she has been such an encouragement to me, and I am SO grateful God crossed our paths on this journey. We love you so, Jeanne! 

Thank you so much for lifting us in prayer, friends and family!