Ahhh… there are not enough hours in the day! I have been meaning to write ever since the surgery… thank you to Meg for reminding me during a time when I have a few minutes!

Violet did GREAT during her surgery! Here is an update in pictures:

She was the happiest girl in the world just before getting wheeled off to the operating room:

Her surgery lasted SEVEN hours! The surgeons were oh-so-careful with her because of the bone disease and the fact that kids with OI tend to bleed more, so they certainly took their time! Here she was just after surgery, in the PICU:

She had IVs and tubes everywhere… IVs on every limb, a Broviak catheter (also known as a central line) in her groin, a catheter, blood pressure cuff, monitors for her vitals, etc. She was hysterical because she was disoriented from anesthesia and because her pain meds hadn’t caught up to her pain level yet. The next few hours were among the worst of my life.

The day after was the worst day of swelling:

Her left eye swelled shut and she started to bruise. However, her spirits improved dramatically when her catheter was removed and we could pick her up. Within a couple of hours, she was clapping and smiling again. It was incredible.

Two days after surgery, her bandages came off. Check out this major incision:

We estimate that she has 60+ stitches in her head. They are dissolvable, thankfully! It sure wouldn’t be fun to hold her as all those stitches were removed!

Later that day, Violet was in a great mood and really showed us that she is an incredibly tough little girl!

Her surgery was on Thursday morning (Aug. 9), and she was released on Monday, August 13th–their 11-month birthday! We were so glad to come home, and she has been doing so great with recovery ever since. It is amazing to see how quickly she is healing.

She was fitted for a helmet while in the hospital and received one a few days later. Her surgeon felt that because the bone disease causes bone to be lesser quality than normal, she should wear it when out of our care for protective reasons. So if she goes to daycare, she wears it, or if she is being particularly rambunctious. We don’t want her to hit her head and break one of those healing bones or damage a plate or screw that is holding everything together.

The weekend after Violet came home, we dressed them up to attend a family function. We usually don’t dress them alike, but these dresses were a gift from my mom and were too cute!

Layla’s on the left, and Violet’s on the right.

Both babies are starting to enjoy some solid food, finally! They are very picky about flavors and textures, and more often than not refuse what we feed them. I started out feeding them only made-at-home purees, but found that all they were eating consistently were bananas and sweet potatoes. We branched out and started in with the Gerber products–Puffs, Cheeto-like snacks, yogurt melts. They do like those, of course, because they are pretty much junk. They liked Cheerios briefly but now spit them out–must be too bland. They’ve refused all of our table food for a few months, but are finally starting to turn around. They like pizza and macaroni and cheese, so far!

Certainly not nutritious, but we are just happy that they are eating anything off our plates! We’ve offered them healthier options–blueberries, pieces of grape, corn, etc.–but they have refused it all. Work in progress, I guess.

They are crawling like crazy. Layla still only army-crawls, but she’s still getting wherever she needs to go, so we guess that’s okay. Violet crawls, and is quick! They are both also standing. Layla pulls up effortlessly on everything and has “cruised” a step or two. Violet can stand, but only if you stand her up. She’s a little behind, which I have read is normal with clubfoot treatment. She is also really scared of falling, and that is something we’re going to work on.

Now we are planning for their first birthday! They turn ONE on September 13th–only 15 days away! I can’t believe it. This has been an incredible year on so many levels. I just look so forward to watching their personalities emerge even more and for them to accomplish milestones and all of their goals. We are so lucky!

10 responses

  1. I have wanted to write since your last post….there are just no words. Little V is so awesome to go through this….but how aweful that must have been for you. Seeing her in those bandages made me ill…..I have a sweet girl myself and if I had to see her go through that…..I can only imagine what you’ve been through, and am proud of you for holding it together…and still being able to blog about it! And sweet V is such a trooper…you’d never know anything happened from those last few pictures. They are just beautiful little girls…so happy this is behind you all now!

  2. i am speechless!
    they are both so beautiful and full of life. i love all the photos. thank you!

    violet looks so well, considering she had such a major surgery! 7 hours?!! what a precious sweety pie, i want to give her a kiss on every stitch.

    her helmet is pretty, and i so hope that son this will all be squarely in the past, and her healing will be complete.

    thank you so much for the update, and i’ll continue to hold you all in my thoughts.
    have fun preparing for their one year birthday! what fun! congratulations!

  3. Wow, you are also very strong to be going through everything. Your girls are truly amazing! Everyone tells me time goes so fast and it sure does. Hope you all enjoy their first birthday!

  4. OMG Em…I am trying to imagine just how strong you must have been to keep it all together during and after the surgery. You are ONE brave chickie my friend! And the girls refusing food/picky eaters…I’ve got one myself too! Humpf…its not easy! LN10 is super picky about textures too. Its getting better though. And can’t WAIT to read about the birthday celebration…a milestone for SURE!!

  5. Hooray! That little Violet is one heck of a trooper. And both she and her sis are beyond adorable. I’m so glad things are going well! Thank you so much for posting an update. Congratulations to all of you! I hope the girls, and their parents, have a wonderful first birthday!

  6. P.S. I realized I should add: I’m getting ready to cycle at your CO clinic and found your previous blog and this current one while scouring the internet for info/others who’ve been through it. After reading all about your gorgeous daughters earlier this summer, I’ve been cheering on Violet (and you and the the rest of the fam) and hoping for the best since I first learned of her diagnosis and surgery. So although we don’t know each other, I’ve been sending positive thoughts your way.

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