September 3rd, 2015 | Written by Jo
We are leaving again to head to Boston for Clara’s third Open Heart Surgery. It’s the last of the 3 open heart surgeries that kids with HLHS have, to change their circulation. One big outcome from this surgery is higher blood oxygen saturation levels than ever before, meaning more energy and higher endurance! We are so excited about a pinker more energetic Clara.
This surgery is called the Fontan, it will be the final step in changing her blood circulation. The blue blood from the bottom half of her body will be rerouted straight to her lungs to get oxygenated. Right now, that blue blood just gets pumped right back through her heart to her body again, which is why she still turns blue when playing.
Surgery is Sept 10, we begin pre-Op appointments on Tuesday and have a surgical Cath on Wednesday, Sept 9. The Cath is so that the surgical team can get a look from the inside, measure heart pressures and best understand how her heart is holding up.
We’ve been SO blessed by the Moms who have sent me books and tools and tips! It’s so much more than I could have wrapped my head around alone. This is the first surgery Clara will be aware of. She is going to know what’s coming when she has her blood drawn and tubes pulled and medicine given. It’s a lot to ask of a 2.5 year old.
We are sending Eleanor to my sisters in CO, where she is going to be spoiled with love but super missed.
While this is the “safest” surgery Clara’s faced yet, I think we are more nervous than ever. It’s wildly unnatural to send our silly, outgoing, affectionate, dramatic and super happy girl into surgery. I just want to soak in all my Clara hugs and kisses possible.
Now for some fun Clara stuff:
Clara paints about every day, she loves water colors, but occasionally she’ll paint with finger paint. She calls the finger paint, “bubble paint” because the containers look like bubbles. She knows all her letters and we are working on her numbers, and she likes to take a book to bed. I catch her waking up to read before she calls me to come get her.
She mimics most everything I do, so when Miss Rumble Tumble Eleanor falls and bonks her head for the 15th time in the day, Clara beats me to the “Oh Honey, Honey, Honey”. Clara takes all my dish towels and puts her babies to sleep all over the house and even attempts cleaning the chalk board and counters. She started to call Joe, “Joe” and I’ve got her to at least say “Daddy Joe” and it’s adorable. Lately, she’s even been asking for coffee to drink.
Clara thinks ice cream is called “apple pie” no matter how many times I try to tell her it’s not. She loves to use me as a jungle gym. She loves her “baby Elle” and stealing her pacifiers. When trying to count “1, 2, 3, go” she actually says “9, 2, GO!”.
I could go on and on, but basically we adore her.
We can’t express how loved we feel by all of you who have be in prayer over clara for the past 3 years. Serving a living God, who can bring joy despite our circumstance is what sustains us when we enter hard times.
Here are specific ways you can pray for as as we prepare for our Boston trip! - Health, Clara can’t have a cold or surgery will be postponed. She has to kick the end of the cold she has right now. - For peace over our whole family as we prepare and to reduce our anxiety - For wisdom when it comes time to talk to Clara about her “sleepover” at the hospital - That it’s not as hard a separation from Eleanor as I am dreading. - For safe travels to Boston for us and for Elanor and her Aunt Jen to Colorado. - And of course, for the Cath and surgery to go smoothly and without complications.