Not even five minutes after Dr. Finn-Thompson left the room, the anesthesiologist came inside and introduced herself as Dr. Annette Schure. I immediately felt calmer in her presence – which I’m sure didn’t have anything to do with the fact she specializes in pain management (right?). I clicked my pen and awaited her spiel that I was very interested in. She was the one who would make sure Indiana was, in her words, “safe, with no pain and comfortable”.
Dr.Schure began to go over the day of the surgery from her perspective and what we would expect step by step. Indiana would not be allowed to have anything by mouth two hours before surgery and this can make an infant incredibly cranky. If that’s the case, they would offer a sedative just to calm her down but not put her fully to sleep. Once it was time to actually administer the anesthesia, this would be the woman we’d be handing our baby to.
Once inside the room, they would put a mask on her face and have her breathe in to get her to fall asleep. Once she is in a deep sleep they will put an IV in her hand and use more anesthetic – a “good amount of opioids”. They would also put in a muscle relaxer for her and along with the general anesthesia; fentanyl would be administered for pain management. They would put in what’s called an “A Line” that will either be in her wrist or her groin which they would check with an ultrasound. The team will also place a central venous line in her neck as well which will send very strong medication straight to her heart. They will monitor the pressures in her heart throughout the procedure. With these two lines, they can use them to for easier access to draw blood. She will also have a Foley catheter to monitor urine and a TEE probe, an ultrasound probe through the mouth to look at the repair after taking her off bypass. She will be put on bypass, which means a heart/lung machine will be doing her body’s work instead of the organs themselves. Simplest terms: her heart will be stopped so the surgical team can work on it. Try wrapping you head around that as a parent. In addition, they will administer a breathing tube while she is on bypass. Once she is transferred to the PICU after surgery, she will be put on morphine and round the clock Tylenol for pain management to keep her comfortable.
With all of these tubes down her throat, she informed us that Indie’s voice may be irritated and hoarse but that’s normal. It will go away after about 2-3 hours or so. Once we are allowed into the PICU after the 30-45 minute wait, she will have all of these monitors and tubes sticking out all over the place. There will still be tubes in her throat, monitor lines and IVs and the chest tubes to drain the excess fluid.
“You won’t see much of Indiana when she comes out. But, over time there will be equipment taken away and you will see more of Indie, less wires.” She paused, letting that sink into our minds.
I am more or less used to seeing people, infants in particular, in the PICU by various photos all over my Instagram feed. As an advocate and heart mom, my feed is full of kids pre and post surgery. I have a better chance of swallowing reality than Alex once we step into the PICU room. Not to say Alex can’t handle what he sees. If you ever watch Grey’s Anatomy, you’ll know Alex Karev and if you made it to this season, his character development is excellent. My husband is truly Alex Karev down to the name minus the surgeon part. He is tough as nails, smart ass (and handsome!) but, becomes jello when it comes to children. He is a bleeding heart for kids, especially babies. He could never do what Alex Karev does because his heart would literally fall out of his chest every second of the day.
So imagine the guy who cannot watch the tough Karev episodes regarding children actually living an episode in his every day life? It’s asking a lot of someone who feels that way and then has to see his 3 month year old daughter in that same position as the other kids. The downside is he can’t turn the TV off, he can’t turn away. He has to be strong for his daughter and be able to step through the doorway. I think about all this as I’m looking at him, holding Indiana and processing what is being explained to him. He’s an intelligent guy but these are all new things to him and he’s learning about them in less than an hour’s time. I feel so much for him. He is an incredibly strong person who has overcome a lot in his lifetime and I hate to see him struggle even the tiniest bit. I wish I could do more in supporting him and making him feel better; let him know that everything is going to be okay. Because it will. It will be okay, my love.
She finishes the conversation saying the main concerns after anesthesia are arrhythmia and bleeding, then asks if we have any questions. We ask a few, then she proceeds to do a quick exam and listen to Indiana’s heart and lungs before leaving. Again, I felt confident with meeting both doctors and relaxed a little more, my head still reeling from all the information. I knew most of it but, when it’s the actual surgical team telling you about it, it makes it more real. And overwhelming.
Lastly, Kateri the nurse practitioner came in to talk about what to do the night before the surgery and post op care. I am happy to see her – it’s like listening to a mother explain things to you. Her presence is light and happy, you can tell she genuine enjoys what she does and working with people. She hands me a surgical scrub for washing Indiana the night before the surgery. It’s for prepping her skin for the morning surgery like the surgeons use before they go into the operating room. Kateri then goes over where we go for parking, which building, what floor, what room. She answers all of our questions and tells us how great we’re doing.
“Are you going to be there the day of surgery?” I ask with baited breath.
Please say yes.
She nods, ”I will be there, yes.”
Thank god. I feel better knowing that, having a very familiar face be there from the very beginning.
“You guys are doing amazing,” she says with a smile and pats my back when we leave the room for the next round of tests.
Indiana, Alex and I head down the hall so she can have her chest x-ray. They lay her down on the table and she is getting increasingly grumpy. She’s barely eaten, barely slept and I can tell she’s just done with the day. I calm her by singing “Part of your World” from The Little Mermaid. She loves that song and she gives me her biggest smile. Two photos later and the chest x-ray is finished within two minutes. I gather her in my arms and Alex follows us back to the other end of the hallway for her blood work.
This is where “Gloob”, from my previous post, comes in handy. This little octopus will make Indiana smile no matter what. Something about it’s cute little face.
To keep her distracted, I stuck her kitty wubanub in her mouth and turned on “Gloob”, while singing as the needle stuck her. She screeched for literally 5 seconds, then stared at “Gloob” and moved on from the pain. An absolute champion. Almost like saying “Eh, I’ve got bigger fish to fry” like a blood test was nothing compared to what’s coming later. She knows she has to be strong to endure what’s coming on the 22nd. We leave MGH 5 minutes later and the drive is again, quiet. Indiana has passed out, exhausted from a long 4 hour day at the hospital. I take this time to collect my thoughts.
Since learning about her diagnosis, I have been (mostly) made of steel. I’ve shed some tears; I can count on one hand of how many instances in the last three months. Distracting myself by keeping busy has been incredibly helpful – whether it’s washing/sterilizing bottles, playing with Indiana or working on other CHD projects. All of my energy goes into taking care of Indiana, with little to spare for everyone else. Becoming a heart mom has been easily the most challenging part of my life and yet, I feel like I was made to do it. Like I was hand picked by the universe to take care of Indiana because it knew I would be able to handle the pressure that comes with it.
As a heart parent, you focus on washing and sterilizing everything to make sure your child doesn’t get any colds. You become a professional infection control worker. Whenever there is a feed, you document the time, how much and how long it takes because you don’t want your baby to burn the calories off. You inspect every part of their body every day for any blueness, any swelling or fever.
Hundreds of questions run through your head every day.
How much are they sweating and are they sweating when they feed? Do they sweat when they sleep? Are they sweating because of the VSD or because it’s a little hot today? Are they not eating because of the VSD? Are they eating too much because they’re burning calories like cardiac babies do? Why do they sound so congested – is it the VSD, a cold or allergies? Why are they sleeping so much? Is it because of the VSD or because it’s part of baby milestones and growing? It can drive you crazy. That’s just tip of the iceberg questions.
The repair surgery is both a blessing and a curse. Waiting for the surgery has been torture and yet how the hell did it become 5 days before? I’m so glad she’ll have her hold repaired but deep down I am also terrified. What if they find more? What if they mess with the natural pacemaker? What if it leaks? What if? What if? What if. I should be letting my emotions go and feel what I’m supposed to feel but I’m afraid of falling apart.
I need to stay a rock. I need to stay a rock for Indiana, for Alex, For Quinn. I need to be steady in the storm. Stay calm when there’s chaos surrounding us. I am in the midst of my youngest daughter’s largest battle that is for her life. It’s daunting, it’s traumatizing, and it’s downright scary. But I refuse to back down from it. Not ever. My struggle will not be when she’s in surgery or in the PICU.
It’ll be the moment we hand her off and they take her to surgery. I won’t even try to picture the moment because… I know once I do I’ll start sobbing. Handing your child over, trusting all these people with your daughter’s life, watching them walk away with her after you’ve been attached to her since birth… Having done all you can to keep her safe for three months to becoming completely helpless? Fresh hell. 10th circle of hell. How many circles are there? Add at least 8 more, actually.
For the next few days, I’m going to enjoy the time I have with my family. Once the surgery is finished, I will be staying with Indiana her entire stay at the hospital. This is anywhere between a week to 10 days. I tend to get stir crazy after just 2 days. However, I believe I’m going to be very busy with Indiana’s post op care and staying on my toes for whatever happens after her repair. I am mentally preparing myself for what’s to come in five days.
I just want it to be over with. I want Indiana to be okay. I want us to do actual family things together and not have to worry. I can’t wait for that. I can’t wait for the four of us to do things together as a family.
Thanks for reading.
Keep your heart strong.