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!