Milestones and Set Backs

In a little less than a week Stella will be ONE! I cannot believe a year ago we were anxiously awaiting her arrival, full of fear and anxiety, and now she is the light of our lives! But in the category of never dull, here is what's new:

Since her bought with RSV Stella has struggled to put on weight - she lost over a pound (and was already a peanut) but we are back to making progress with sippy cups. Most days if we have to hook her up to the feeding tube, it is simply for water to make sure she is hydrated. She hated drinking formula (can you blame her?) but will finally drink whole milk and we are just thrilled to see her chug :) She loves provel cheese, eggs, cereal - she literally eats more than Ellie will most days. FINE. Ultimately, it has been left up to us when to wean her from the feeding pump and we feel good about how she has done. Would we like a plump baby? Sure. Are we ever going to have one? Time will tell.

Unfortunately, in terms of set backs, Stella had an echo last Wednesday and it was the first time we didn't get a glowing report from the Cardiologist. After an hour with a screaming baby and a cold ultrasound probe, the doctors were not satisfied with the images they saw and requested we bring her back for a CT with contrast to get a better picture of what is going on inside her heart. Specifically, they would like to see if there is flow into her Left Pulmonary Artery. If there is not, she will likely earn a trip back to the Cath Lab where her doctors could open the LPA - a "simple" repair in the world of a heart baby, but it still carries risks and means more hospitalization.

In addition to concern over her LPA, her Cardiologist is concerned about regurgitation (or leakage) in her new aortic valve. A normal heart has 4 valves, Stella's heart has 2. The new aortic valve was built by Stella's heart surgeon during her first surgery when she was 2 days old because the valve that typically comes from the aorta was too small. Since then both of her valves have had mild leakage which is tolerable and something we knew had to be monitored. But since her echo in May, the new aortic valve has gone from having mild leakage, to mild to moderate leakage. What does this mean? Nothing great. For now we will continue to watch the valve for increased regurgitation (leakage). If it continues to become moderate, she will be saddled with medicine similar to an ace inhibitor 2 or 3 times a day (with no end in sight). Should the leakage become severe, Stella would need the valve repaired (meaning another open heart surgery) or would be put on the transplant list.

We've come so far in a year beating so many odds. Stella has recovered from surgeries faster than we imagined, and despite being a very sick little girl, charms the socks off of everyone she meets. She is that happiest kiddo and just brings JOY to our world. The mere discussion of these set backs, the idea of more surgery so soon, and the suggestion of a transplant list (albeit years down the road) have sent me into a tailspin.

We ask for prayer leading up to her CT on December 13th - for clarity and wisdom for her doctors (and peace for her parents!) We pray the leakage from her new aortic valve doesn't worsen and that we have a very long time with our Stella bean before the words "heart failure" are ever spoken in an appointment again.

I've realized the Christmas season will never be the same, it will never feel normal. Glory to God in the Highest is taken literally, and on earth peace, goodwill toward Man is what we wish for. Thank you, Jesus, for a year with Stella, and for all the years we have to look forward to. Christmas birthdays are a blessing, as is our baby girl, your saving grace, and your Father's love for us all.

Check back in on 12/15 for a post CT report and a VERY happy birthday celebration for the girl that has stolen our hearts!

Stella is very happy about her new pajamas

Oh hey, I eat now.

With Izzy and Bubby celebrating the best day for the best cause at the I heart Food and Wine Festival