Spring Update 4.15.2

A Little Update…

I attribute much of Gabby’s growth over the past few months to her sisters. She wakes up every morning immediately searching for them on the couch as we exit her room! They cart her around everywhere, give her rides in her wagon that she crawls into and hollers "rideee". They push her on her swing, and share their food during meals. They constantly grab her hands and encourage her to practice walking.  If she hears them in the bath and a few minutes later you can find her seated in the middle of them, mermaid in hand, happy as can be.  The peer modeling alone encourages Gabby to keep up with them. At night, you can find her right in the middle of them, reading a book—or stealing the one they originally grabbed.

I’ve helped coach both big girls’ basketball teams and Della’s soccer team, which has meant some days Gabby has no choice but to attend practices and play on the sidelines. During gymnastics, she hollers from the balcony for them to look at her or reaches her arms out to another parent to carry her around (she knows no stranger). These are all things I wondered if she would ever be able to do?

Of course, we are cautious about the weather and hyper-aware of germs, but we’re doing all the things we would be doing despite her heart condition and developmental delays. I think that’s what made the cardiology check-up we had this past month feel like a bit of a gut punch. The fear of missing all this with my big girls and her on my hip is a reality that’s impossible to fathom.

Gabby has had labs drawn in January, February, and March. The purpose of these labs is to gather data and safely wean her off a few of her medications. The idea is to fully optimize her body before her next open-heart surgery. In a best-case scenario, her little body can prove it’s not diuretic-dependent.

To safely wean these medications, her medical team is closely monitoring her kidney function and BNP levels. A BNP (B-type natriuretic peptide) or NT-proBNP (N-terminal pro-B-type natriuretic peptide) test is a blood test used to help diagnose and monitor heart failure. Her doctor would like her number to be in the 1,000–3,000 range.

Last fall, her BNP level was at 19,000 during her digoxin toxicity episode (SO HIGH!). In January, we were elated that her numbers were down to 2,000. In February, it went up to 3,000, which we attributed to her recovery from Influenza A. Then this past month in March, she tested a little higher—at 5,000. It’s discouraging to see that number rise.

Despite what the labs showed, her cardiologist agreed we should move forward with the medication wean and dropped two more of her diuretics to a half dose. He said to me in February, “Let’s treat the patient and not let these numbers scare us too much.” Of course we are thoughtful and considerate of the lab results but it's always a balance of looking at every angle and right now her other gains are so encouraging. Over the past couple of months, she has continued to steadily gain weight and improve her social, physical, and feeding skills by leaps and bounds—truly the best she has ever been.

Gabby will get labs done again next week. If her BNP numbers continue to rise, we’ll likely need to consult her medical team in Colorado, which may mean a trip down there for a heart cath as a precaution. The worry that her heart is failing is one that scares me more than anything.

When my fears feel crippling, I have to remind myself that I am not in control—and trust His goodness, which has prevailed over and over again. I read this on a morning I desperately needed a God Wink a few weeks ago after her appointment.

“To find Joy in this day, you must live within its boundaries. I knew what I was doing when I divided time into twenty-four-hour segments. I understand human frailty, and I know that you can bear the weight of only one day at a time. Do not worry about tomorrow or get stuck in the past. There is abundant Life in My Presence today.”

Psalm 118:24; Philippians 3:13–14; Hebrews 3:13

A beautiful reminder-read at no coincidence-at the exact right moment. Thank you for continued prayers and keeping up with our little miracle girl. For now we will continue her medication wean, and pray for a low BNP next Monday and great echo the following week! Luckily we have lots of activities to distract us, between Gabby's therapies of Speech, PT, Feeding Therapy & OT, weekly soccer/basketball/gymnastics/softball and mom's marathon training we should be set!

Go Win The Day!!