A New Start on Verity’s F-ed up Heart

Hello again!

Happy Valentine’s Day! This heart-filled day is especially meaningful to us this year because today we can celebrate what has so far been a very successful arterial switch operation (Jatene Procedure) and recovery! Spoiler alert: Verity’s heart is now anatomically correct, and she’s meeting all of her goals so far!

Now that we’ve gotten the good news out of the way, we can go back and detail a bit more about how yesterday went and how today is going.

Yesterday, Mike and I made sure to arrive at Lurie super-early since Verity’s surgery was scheduled for 7:30. She looked gorgeous, as usual, and despite not having eaten since midnight, she was surprisingly chill.

The morning of surgery, she decided to flick us off before we let the surgeons take her.

She is happiest when she’s being snuggled and has something to suck on, which, for better or worse, is her pacifier. She and I napped a little, and had a nice time hanging out. Shortly before 7, some of Verity’s surgical team stopped by to answer any last minute questions, and by 7:30, she was rolled out of her cozy room down to the operating room.

Mike and I holed ourselves away in the Family Great Room, where we awaited bi-hourly updates on Verity’s surgery. Since you’re reading this after the fact, I won’t bore you too much with details, but a nurse practitioner informed us when Verity was put onto bypass, when the first incision was made, and when she was taken off bypass. Surgeons use the heart-lung bypass machine to immobilize the heart and lungs during surgery. What this means is that Verity’s own heart was stoppped, and the machine was responsible for pumping her blood throughout her body keeping her alive. The same machine was also responsible for taking over work done by her lungs.

Anyway, things had gone really well up until that point, around 2:00 pm. We were told to expect another update around 3:00, at which point she would be in her room. Unfortunately, we didn’t receive an update at 3. And we didn’t receive an update at 4, and at that point, Mike and I were getting really nervous about Verity. After another painful amount of waiting, one of Verity’s surgeons walked in with a smile on his face, and he quickly announced that “everything went as planned.”

Mike and I (and my family, who had joined us in the fun game of waiting) released a collective sigh of happiness and some of us may have even shed a few tears. It’s so crazy to completely relinquish control over your child’s fate to a few (very well-trained) people you don’t even know. Clearly, everyone had Verity’s best interests in mind, but it’s still wacky.

Only a short time later, we were invited to go see our daughter. If Mike and I hadn’t had 20 weeks to prepare for this surgery, we might have been completely floored by the state we found her in.

Verity hours after surgery.

She had (and still has)

• About 6 bags of intravenous fluids being pumped into her through various ports,
• A respirator (that is put in her mouth in such a way as to make her look like a fish),
• A urinary catheter,
• A drainage tube leading from her chest cavity,
• A few blood oxygen saturation monitors,
• A heart rate monitor,
• And probably some other things that we are failing to notice right now.

While we were moderately prepared for the state that we found her in, obviously, it was still hard seeing our wiggly, cuddly daughter laying completely prone and motionless in her bassinet. Among the many fluids that were being pumped into Verity’s little body were a couple forms of sedatives (to alleviate the pain of the surgery and the annoyance of being on the respirator) and a paralytic (to keep her from using up energy wriggling around and to keep her from straining the stitches made on her chest. Her surgical incision is covered with a long line of gauze and some surgical tape, but since it’s covered, it’s actually among the least scary things going on.

An hour after surgery, Verity was hooked to so many devices.

We chatted with Verity’s nurse for a long time in order to get a grasp on everything that we saw, and while we were just sittinig in the room keeping her company, a few other doctors trickled in to check up on her and give us a few updates. Yesterday, Verity’s big goal was to make it through surgery and to stabilize enough to begin her recovery. When we finally left her room that night, we had heard from several doctors who told us she was still doing as expected, and that they didn’t anticipate any new surprises.

Mike and I headed home exhausted, but I think we were both in fairly high spirits. We snacked on some random food my family had left behind, and I settled in to watch Grey’s Anatomy. Or, I started to watch it until Mike pointed out that I probably should try to watch something unrelated to hospitals and sick/dying babies. I switched to Parks and Recreation, which probably was a better choice to begin with anyway.

So today! Valentine’s Day! There isn’t too much to report since all the exciting stuff has already come and gone. Today’s goals were to (1) reduce the amount of paralytic she was receiving, (2) get Verity breathing a little on her own, and (3) get her urine output up. So far, she’s met goals 1 and 3, and the nurse is working on getting her to meet goal number 2 – it’s apparently a process, since the sedatives Verity is on suppress the body’s desire to breathe.

We’re looking on 24 hours post surgery, still hooked up to a slew of equipment.

In additioon to those goals, the nurse is also slowly decreasing the amount of morphine being pumpd into Verity in order to increase her awareness and help her meet her breathing goal.

In all, Verity has had a very good day. She’s starting to do all the things we already learned to love about her, like making cute suckling faces (this time on her breathing tube), wiggling around (a bit), and grasping our fingers. She seems a lot more present today than yesterday (for good reason, obviously), and we are looking forward to tomorrow when her sedatives will likely be reduced even more. If she continues to improve at her current rate, she might even be ready to be extubated! This is particularly exciting because it’s the most important thing that needs to happen in order for us to snuggle her in our arms again.

Phew! So, this was a long post, but the next posts should be short and sweet as Verity slowly regains her health. Again, we are so grateful for all the support you all have given us, and we remain very positive and hopeful that the next couple weeks will continue to be just as good.

Love,

Dana and Mike