a year ago today… I’d taken a full six weeks off of work for maternity leave, and followed that up with four weeks of working Monday, Wednesday, Thursday… that time off used up the entire amount of paid sick, vacation and personal time I’d had banked, except for just a few days – because I knew I’d need to take some time off for well-baby doctor appointments and my own as-yet-unscheduled post-partum checkup.
it was Friday, July 20th, 2012… my last day to spend with my girls before returning to work full-time and I was feeling some anxiety… anxiety over being away from my brand new baby, and also wondering how well Goose would adjust back to mostly full-time daycare after two and a half months of going just a few days a week. I was also anxious because we had woken up late and were running behind for Gator’s 9am, 2-month well baby visit. and I mean “running late” as in walking-out-the-door-two-minutes-before-nine-with-a-12/15minute-drive late. I still don’t know what prompted Hubs to go with us that morning, as he rarely goes to those appointments – especially if vaccinations are taking place.
I called our doctor’s office to let them know we were running late and waited on hold as the receptionist checked to see if our doctor would still have time to see us… the Big Guy Upstairs was looking out for us that day, as even though Dr. Liz had to be somewhere shortly after our appointment and it would be a tight squeeze, she said she’d still see us. I will FOREVER be thankful for that.
the appointment started off as per the norm except that instead of the medical student coming in to take Gator’s weight, length & head measurements and vitals, it was Dr. Liz herself she entered the info into her laptop and asked if we had any concerns, at which point I commented about the fact that Gator hadn’t been nursing well the prior two weeks and I thought it could be related to lip-tie and tongue-tie. I’d been researching it and had received a postive diagnosis by a trusted, knowledgeable International Board Certified Lactation Consultant and was in the process of deciding whether or not to make the 4hr trek to Dayton, OH to have them revised… Dr. Liz checked out her tongue-tie and said she could clip it for us if we wanted at the end of our appointment, but wanted to get the rest of Gator’s checkup underway.
there was no sudden moment of increased tension, more like a mild curiosity, when Dr. Liz called in her medical student to listen to Gator’s heart… although that curiosity increased and was coupled with a tinge of nervousness in my momma heart when she called in one of the other doctors in the practice to listen as well – which grew slightly as I heard her say to him “VSD? that’s what I thought.” it wasn’t even when she told us that she’d heard a murmur that we became concerned, after all, she’d said that many times murmurs go away on their own – and I knew that I’d had one when I was younger that did so.
for me, the anxiety started creeping in when she asked if we had plans later that day or if we could go to see a cardiologist (if she could find one in the office that day, it was a Friday after all) because their machine that measures oxygen wasn’t working, but even that she was able soothe away by saying “it’s probably nothing, but with it being the weekend I would just feel better if you saw a cardiologist today” I don’t know if it was my blind trust in her, or if I was more naive than I knew, but I believed that she was absolutely right. it was going to be just fine, we’d get her vaccinations, go see the cardiologist and enjoy the rest of my last day of maternity leave.
when Dr. Liz asked if we could drive to a cardiologist an hour away if needed and then we overheard one of medical assistants on the phone asking “do you know of ANYONE in the area who is in the office today?” I started feeling the knot in the pit of my stomach. Hubs and I exchanged glances over Goose & Gator’s heads – they seemed to show the same level of concern… Dr. Liz came back in after what seemed like forever, it could have been five minutes, it could have been twenty-five. I can’t recall exactly how long we were there that day, but I seem to think it was close to two hours, when regularly the well-baby visits are less than an hour – including the shots.
I think denial had already started, or maybe it was some protective-shock-response because even when Dr. Liz sent us on our way (luckily to a local office) without vaccinations (because “they aren’t urgent, we can do them next week sometime” and her cell-phone number for the cardiologist with a request to be called after our appointment) I still stopped at the checkout desk to make an appointment for the vaccination and clipping of Gator’s tongue-tie. nothing about the entire occurrence struck me as completely and totally out of the norm too unusual, I don’t know if I thought this was possibly normal for heart murmurs these days. Goose was born Heart Healthy – this was a new experience for us.
I was even fairly nonchalant about it when my mom called to see if Goose wanted to go to a bounce place with her & my sister, nephews and niece. “oh, no. that’s okay, we’re on our way to see a cardiologist for Gator – yeah, she has a murmur so we’re getting it checked out… no, Goose can stay with us, it shouldn’t be too long of an appointment. yes, I’ll call when we’re done. love you too…” in hindsight, we should have sent her. by this time it was just about lunchtime, which is followed closely by naptime, and we had skipped breakfast.
the appointment was a bit of a blur… we were expected (and extremely lucky as it turns out. not only was this particular cardiologist part of the Mott Children’s Hospital – U of M, but she happened to be in the office and available to see us – on a Friday. a day their office doesn’t see patients. I mentioned the Big Guy Upstairs, right?) and were shown right into an exam room where Gator was once again weighed, measured, her vitals taken, and then – she had a bunch of sticky electrodes attached to her chest and abdomen for an EKG. it was a bit tricky for the nurse, Karen to get a good pulse reading, but she assured us that it wasn’t unusual. I don’t know if she meant not unusual due to the murmur, or because the pulse is hard to find on tiny 9wk old babies.
we met Dr. Goble and she took us right in for the Echocardiogram – which she told us, she doesn’t generally do herself, but their sonographer was not in the office that day. Gator was semi-cooperative, she didn’t fuss too much, but she was hungry and squirming. Dr. Goble was able to get a good enough look at Gator’s heart to make some determinations, and unknowingly dropped quite a bomb on us when she said that Gator “has a very large VSD, and small ASD, as well as a narrowing of her aortic valve… these can be fixed with open heart surgery, which we can get scheduled. how soon would you be available? I can check to see which surgeon is available and make the choice for you if you’re undecided…”
Dr. Liz had been trying not to scare us, which I definitely appreciate, but maybe if we had been given some type of idea of what to expect we may not have been so blown away. again, I’m so thankful Hubs was there that day, as I definitely went into Momma Bear mode, while he was able to stay calm enough to start asking questions. Dr. Goble finally left us to make a few phone calls to the Cardiology Team down at U of M to start making plans for Gator’s OHS. it was then that I hugged my sleeping baby tight to my chest as the tears started rolling down my cheeks. I never lost control, or became hysterical, I just silently cried sitting with the three pieces of my heart… one of whom whose was broken. I couldn’t fathom it. I couldn’t understand how just a few hours prior my tiny little girl had been perfect, and now she was broken… requiring a major invasive surgery to save her life. it was too much to comprehend…
my phone was dead. Goose had fallen asleep after much whining about being hungry. Hubs was lost in thought. and then Dr. Goble came back into the room. she had called and consulted with the Team, and it was decided that August 1st was Surgery Day. eleven days away. it seemed so soon… and yet, knowing that we would essentially have to be quarantined in our house so as to prevent any illness in Gator, it also seemed so far away. we placed our trust in Dr. Goble and Mott’s Cardiology Team when she said “if it were urgent, you’d already be in an ambulance on your way there” she made sure that she had explained exactly what CHD’s Gator had, and gave us printouts with detailed descriptions of each, and assured us that the surgeon we had been scheduled with was excellent in her field, and we would be in the best hands at Mott.
shortly after 4:00pm, after a very long day, we left quietly, carrying our precious sleeping daughters, both of us in a state of shock, with prescriptions to be started immediately to get the fluid off of her lungs (there was finally a reason for her having the “quietest cry” anyone we knew had ever heard… and for the fact that even at 9wks old she did nothing more than eat, sleep and poo… it was all her little heart could do to keep her body breathing) an appointment for the following Monday, and handful of paperwork and information sheets and the numbers for the hospital social worker and Ronald McDonald House…and a heart-stopping, down-to-the-bone fear.