Cardiology Appt #4 Update

Yesterday was a big day. Bryan and I took Maddie over for her Cardiology check-up in Bellevue and for a visit to Children's in Seattle. She gained almost 2 pounds in 5 weeks, weighing in at 10 lbs. 13 oz. so we were very thrilled to see her now in double digits! I consulted with her dietitian and she has ordered for her to eat 90 ml (3 oz) per feeding, 8x a day. This would give her 720 ml/day. We've only hit this amount once before...so I hope she can take in this much "fuel". She's been having some puking episodes...we're thinking she may have a bit of reflux but it's mild since it's so sporadic. It's been going on for over a month now and some days it's more prevalent than others.

The surprising part of her appointment was her O2 sats. She was running between low-mid 70's. At home she's been consistent at 77-81 so I was a little alarmed to see the pulse oximeter bouncing around between 72...76...even dips into the upper 60's. Our temporary cardiologist, Dr. Seslar (Dr. Vernon is on maternity leave and had her healthy baby boy!!!) feels like our sat monitor runs higher and their scores are the accurate ones, which means Maddie is getting close to her next surgery. We go back in 3 weeks and he feels we should even see more of a drop then. Once her sats are consistently between 70-75, it's time for the cath lab then she'll be presented to the team for her Glenn surgery (her 2nd surgery). Seslar is thinking she'll be ready in August. The minimum weight they like to see them at is 12 lbs, so that's why we're working so hard on gaining (plus she's only in the 10th percentile).

Overall, Maddie is still doing great. These O2 sats are "normal" for her with her heart anatomy. They are doing what they're supposed to: drop. As she gets bigger, she's outgrowing the shunt she has (from her 1st surgery) so she's not getting as much oxygen profusion throughout her body. This is what has to happen before she can have her next surgery and we have to remind ourselves (since she's doing so well) that she HAS to have the next surgery in order to live. The repair is going to happen and I don't even like to think about it. When you look at Maddie, you wouldn't know she has such a complex heart disease. She's mostly "pink cheeked" and looks healthy, only cynotic (blue) when she's fussing or pooping! So she's plugging along just as she's supposed to, she just may be getting the surgery sooner than I'd thought.

It was our first time going back to the main campus which brought back many feelings for me. We went to see our favorite nurse, Anne. Maddie connected right away with Anne, I honestly think she remembered her! It was very special to see. Anne was Maddie's NICU nurse for the first week of her life and I have attributed much of Maddie's success from her great start with Anne. She got her to take a bottle right away, was persistent with her feeding before her first surgery and I know this has made a huge difference with our outcome. After our visit with Anne and Dr. Jeffries, one of the Cardiac Intensivists from the CICU, we made our way over to the Ronald McDonald House to visit our friends, Angie and Natalie from Alaska. Natalie was Maddie's roommate on the floor and she's back for her 2nd surgery, the Glenn. They are from Alaska so orchestrating this whole surgery thing for them is amazing. I've felt like Royal is too far from Children's...poor Angie, she has to take a plane to get there with her daughter! Natalie has the prettiest big eyes and longest eyelashes, she's just a little jabberer too! So cute! She has her surgery tomorrow, so please keep Natalie and her sweet family in your prayers.

Natalie & Maddie