another good check-up

We had another good check-up with Brooke on the 16th. Sorry it's taken so long to update you on it! We had multiple birthday celebrations (for the same birthday :)) and parent/grandparent visits right around that time, so it's been extra crazy (and fun!) around here. Can't believe this girl is 7! She is a sweet, book-loving, kind, cartwheel-turning, compassionate, sister-loving, thoughtful, hand-standing, bright, Jesus-seeking, forgiving, ballet-dancing, beautiful-inside-and-out, amazing little girl, and I absolutely love being her mommy. What joy she brings our family! And what great care she takes of both of her sisters. She's quite proud (and protective) in the photo below because she just put Brooklyn to sleep. :)

Brooke's numbers looked good at the check-up. From the first read, we had concern that her oxygen saturation number was pretty low (for her), so we took some extra time hooked up to a monitor to be sure she was at a good place. When I check her at home each day on the pulse oximeter, her heart rate is typically around 150, and her sat level sits around 80 (ideal range is 75-85% for her...closer to or at 100% for healthy babies). So, those numbers ultimately looked good, and she'd had good, consistent weight gain at about and ounce per day. She continues to gain about an ounce per day...and we hit 10 lbs this weekend! Woohoo! She's still a peanut, but her consistent weight gain is so encouraging. We'd like it to be even better in hopes that she will hit 12 lbs by the time she has her next surgery. 

Speaking of her next surgery... The doctor also wanted an EKG and echo done while we were there on the 16th, as Brooke had been extremely irritable for the few days leading up to our appointment. We assumed it was due to having her two-month vaccinations that Monday, 1/13. Turns out we were likely right. We were very glad to have the EKG and echo done though. The EKG looked good. The echo showed that the BT shunt that was placed in Brooke's heart is starting to narrow on one end. This is expected to happen. We've known from the beginning that as she grows, she will outgrow the shunt. They will continue to keep a close eye on the shunt at each bi-weekly check-up, presumably with an echo each time. The doctor indicated that the shunt should narrow slowly over time. We'll also be keeping a closer eye on her sat level at home. I check it a few times a day (instead of just once) now and also when she seems to be more irritable. She is consistently around 79-80. Huge praise! As the doctor said, we want her to gain weight faster than her sat level declines. This decline will inevitably happen in the coming weeks as she continues to outgrow the shunt. We got the impression that, based on the echo results, Brooke's second open heart surgery may come sooner (in March possibly) rather than later (in April as we first guesstimated) now. Time, and numbers, will tell.

She continues to take the bottle very well and seems to really enjoy it. We've had the pleasure of working with a fantastic speech therapist for bottle feeding in the last few weeks, and we feel like we're at a good place with a new technique for feeding. We would love to get Brooke on more of a feeding schedule, but with her good weight gain, we don't want to make too many changes or push any unnecessary change. She's still spitting up quite a bit, so we're trying to determine if our switch in formula brands or her continuous feed rate is affecting this. Ultimately, though the continuous feed 21 out of the 24 hours a day is a bit cumbersome sometimes (because she's "tied to" the feeding pump), we're making it work because it's what's good for Brooke...it's putting on the ounces!

So, there's the medical update. In the midst of all of the appointments and tests and feeding changes and monitoring, we're starting to finally really enjoy our little heart warrior. As I was telling our nurse practitioner recently, we've been so concerned about her health and caring for those intense needs, I had nearly forgotten the fun milestones we would typically begin to see...like smiling, holding her head up well, moving more, tracking movement with her eyes, finding her hands and fingers, making more noise, etc. Her personality is really starting to show, and it's been such a delight to stop and really notice all of these little milestones Brooke is hitting these days. So much fun!!

We have another check-up in St. Louis this Thursday. We are anxious to see how the shunt looks and when they anticipate her next surgery will take place.

Thanks for continuing to pray for and support us! You're making a difference!