6 am rolls around and I feel like I’ve barely slept – but I’m pretty sure I had a few hours. A lump sits in the middle of my throat and I find as many things to do as I can to keep my mind clear. This is not a day to feel, I think to myself as I’m walking into the kitchen and looking over our bags.
Furosemide and Ranitidine? Check and check.
I shuffled through her bag again, making sure there are a few changes of clothing, her kitty wubanub pacifier and “Gloob”, her favorite toy. It’s a blue octopus light with the cutest little smiley face. She’s going through a few hoops today so it’s going to be handy. Quinn is bouncing around, clearly aware something is going on and her go to in dealing with people hustling is, “Mumma, play with me! Daddy come in my bedroom!”
“I can’t right now, Quinn, Mumma’s getting ready,” I say with my dress in hand, and looking down at my 4 year old.
She’s clearly disappointed; she’s used to hearing the words “can’t”, “no” from me a lot lately. I feel terrible saying it because for four years, we were attached at the hip. Ever since Indiana was born, Quinn’s world has been flipped upside down and Mumma has a new center of the universe. It’s not the case but to a little girl who knows nothing but being the center, it’s everything.
“I’m sorry Bo, we’ll be back later today.” And off she went, probably asking Daddy the same question. I hate having to always make her wait because of Indiana this or that. I hope to make it up to her for the rest of my life.
Meanwhile, Indiana must have had an idea of what was happening today because her feeding was terrible. She played with the bottle with her tongue rather than eating. In addition, she barely ate at her 3 am feeding. Indie was just not having any part of anything.
“This is NOT the day to decide not to eat either, Indiana.” I sighed. She smiled widely, both dimples showing and I dressed her, temporarily relaxed by her calming presence.
The beginning of the day wasn’t very promising and I started to feel nervous. It got even more “exciting” when Alex couldn’t find his wallet for a good 10 minutes. Mom found it thankfully and it was off we went to Mass General. My dad had brought me an industrial sized Cumberland farms iced coffee – which I sucked down within an hour. He also brought a chocolate chip muffin from Dunkies and while I knew I should’ve eaten, the appetite was clearly non-existent. I brought the muffin with me but it stayed on the floor, inside the bag untouched for the remainder of the day.
Following a quiet car ride, we arrived early to Mass General and made our way up to the 6th floor. With time to kill, we took a few minutes to look out at the skyline because I’m pretty sure for as many times we’ve been here, Indie hasn’t had a good look at the buildings.
We checked in and as usual, the ladies went wild over her hair. Our little Indie will not be famous for the heart but for the hair. As if electrocuted, it stands up straight into a faux-hawk and I don’t dare brush it. It’s her trademark. Like Derek Sheppard from Grey’s Anatomy (for those that live under a rock), she’ll be known for “the hair”.
We started with her EKG and a 45 minute long echocardiogram where a nice gentleman took the images of her heart.
Afterwards, he had ushered us into the room where we’d meet the surgeon, the anesthesiologist and Kateri, the nurse (though we’ve met many times before). As the wait continued on, I tried feeding Indiana again and just like earlier, she was picky about eating. I don’t blame her – she still had blood tests and a chest x-ray to go, hasn’t had a nap so she’s exhausted. With time ticking, we were wondering if maybe they had found something on the ultrasound and decide a new course of action. We later learned this was not the case – they were finishing up a (successful) surgery before our conference.
Dr. Finn-Thompson walked in, introduced himself and offering his hand to shake before sitting down at the desk. This man was about to be Indiana (and our) new best friend so we got comfortable as he explained the day of surgery.
Our day would start at arrival to MGH around 6:15-6:30 am to get ourselves ready for the 7:30 am surgery. He explained that the surgery itself would be about two hours, the anesthesia part would take a while to put together as they’ll be testing machines and getting everything ready. Indiana’s procedure would finish as an estimate somewhere between 12 and 1 pm. Dr. Finn-Thompson went over how they would repair the VSD with a patch material called Dacron and make sure the hole is entirely closed. He went over risk factors such with infection/bleeding being at the very top, and also an arrhtymia and heart block, which would be permanent but recognized immediately.
One of the risks involved because of the larger VSD is damaging her natural pacemaker in her heart. With that being said if it does happen and does not resolve itself within a few days, they’ll place an artificial pacemaker that is for life.
After the surgery, there would be a 30-45 minute wait until we could see her again in the PICU (Pediatric Intensive Care Unit). That is the average time of admitting a child after this particular surgery making it a grand totally of about 4-5 hours being separated from our little girl. Not. Pleasant.
“Now I know that Dr.Benavidez was looking to rule out Tetralogy of Fallot which he is because there are no other defects besides the large VSD.” He added, looking over the paper work on the desk.
I paused for a moment because that was news to me hearing the name of another type of congenital heart defect. Tetralogy of Fallot is a type of CHD that has a combination of FOUR different defects present at birth. I have provided a passage below from the Mayo Clinic website of what is involved with TOF:
“The four abnormalities that make up the Tetralogy of Fallot include:
Pulmonary valve stenosis. Pulmonary valve stenosis is a narrowing of the pulmonary valve — the valve that separates the lower right chamber of the heart (right ventricle) from the main blood vessel leading to the lungs (pulmonary artery).Mayo Clinic
Ventricular septal defect. A ventricular septal defect is a hole (defect) in the wall (septum) that separates the two lower chambers of the heart — the left and right ventricles. The hole allows deoxygenated blood in the right ventricle — blood that has circulated through the body and is returning to the lungs to replenish its oxygen supply — to flow into the left ventricle and mix with oxygenated blood fresh from the lungs.
Overriding aorta. Normally the aorta — the main artery leading out to the body — branches off the left ventricle. In tetralogy of Fallot, the aorta is shifted slightly to the right and lies directly above the ventricular septal defect.
Right ventricular hypertrophy. When the heart’s pumping action is overworked, it causes the muscular wall of the right ventricle to thicken. Over time this might cause the heart to stiffen, become weak and eventually fail.
Some children or adults who have Tetralogy of Fallot may have other heart defects, such as a hole between the heart’s upper chambers (atrial septal defect), a right aortic arch or abnormalities of the coronary arteries.”
So you can imagine my head was spinning over the idea that they were looking for this in Indiana’s heart. We are incredibly lucky with having, as of right now, an uncomplicated congenital heart defect. I tried to think back when we first met Dr.B and if he had mentioned that at all, but for the life of me I couldn’t remember. I did recall a tidbit about a “narrowing” within one of the arteries but by that time, my head was full.
Indiana has what’s called a Conoventricular VSD that is commonly found in Tetralogy of Fallot; but, as stated above, she has no other defect that’s been seen thus far. We don’t know if they’ll find something else once they open her up because echocardiograms may not show everything. I swallowed this new information, all the while checking out of the corner of my eye to see Alex’s reaction. His forte is not medicine so it was obvious by the lack of reaction he didn’t know anything about TOF – just that it sounded more serious.
There are no other defects present, I thought to myself, trying to relax the banging of my own heart in my chest.
However, due to the large VSD, it is fairly common for smaller holes to be seen once the chest is opened up and they will close those as well. As of right now there are no other holes seen from her most recent echo.
Afterward his “spiel”, he gladly answered all the questions we had written down in our Handy Dandy? Notebook! (cue the Blues Clues music).
“That wasn’t too bad!” he joked after our barrage of questions and we laughed, easing the tension for a moment. I liked him – I felt confident and comforted by his presence and that Indiana was going to be in very good hands.
After a few more minutes of conversation, he shook our hands, said goodbye to Indiana and left us to digest. It wasn’t very long before the anesthesiologist came into the room and the roller coaster started again.
This is part one. Part two will be tomorrow where we meet the anesthesiologist (it needs it’s own post) and the afterward feelings of the visit. I did not want to overload everyone too much with information as we left the meetings incredibly saturated ourselves. There was a lot more to the discussion with the surgeon but with this post being long already, I decided to cut out the “small” stuff. I’ll be more specific come the actual surgery day and post surgery.
Thank you so much for reading and following along.
Keep your heart strong.