After my last post, I tossed and turned for the next few hours, finally giving up on sleep and getting everything together for the morning. Again I looked over the bags sitting in the kitchen filled with Indiana’s personal items and our own. We packed for at least a week long stay because we were told 7-10 days in the hospital. My guess I would last three days before I became stir crazy and restless as I fathom being stuck in one spot. Indiana slept, only taking minimal sips of pedialyte because starting two hours before surgery it’s NPO (nothing by mouth). I was a little surprised that she was sleeping on an empty stomach – maybe there was a part of her that new something big was going to happen that day and she needed all the rest she could get.
Time felt like it was moving fast, slowing down was not part of the plan and before I knew it, I was holding Indiana in front of my family to say goodbye. I watched, a lump forming in my throat, as each member of the house gave Indiana a hug and kiss, including Quinn. This is not a forever goodbye, we are going to bring her back to this house. For the life of me I can’t remember who put her in the car seat, if it was Alex or I. I know he took her and I walked behind him, my feet feeling like cement “walking the mile”, for those who have read/seen The Green Mile. That was the walk of death where this walk we were praying and wishing for a life.
As Alex drove, I closed my eyes and spoke to my guardian angels/spirit guides. These are the group of people I would talk to in the morning going to work, asking humbly for a good day and the guidance to give the best care I could to my residents. I talk to them when I do my tarot cards as I shuffle the deck and ask various questions, placing each card down in a particular layout. And I talk to them during the really tough, dark times, like this day. I humbly ask them all for guidance to keep calm with a clear head, to thank them for watching over the family and to surround Indiana with a healing light, to keep her safe. Some people talk to God, some people talk to passed relatives, some talk to nature, everyone has their own way of asking for help. This was mine and I was confident on this particular day, I was heard.
The upside to driving into Boston that day was Alex’s GPS system; Cookie Monster’s voice filled what would have been a silent car ride and kept us smiling. In five my-els, turn LEFT. OMNOMNOMNOMNOM! I watched as passing trees turned into skyscrapers pulling into the middle of Boston and I couldn’t help but notice how many hospitals we passed until we arrived at Mass General. Indiana was wide awake as we left the car and made our way to the main entrance of Mass General.
We rode the elevator to the 3rd floor and checked in inside the barren waiting room which I assumed was because it was 6:30 in the morning. Indiana continued to be all smiles as waves of emotion I had kept deep inside raged throughout my body. My attempts of having any types of fear that was associated with this surgery disappear were becoming futile as I watched the time tick away. A nurse came and took us around the corner to the triage room where she’d have us dress Indiana in a johnny and get her vital signs.
By request just for a little extra comfort, a very nice man named Stephen (who looked to me like he belonged in high school) came to give us one Hail Mary and a non-denominational blessing for Indie’s surgery. We’d take any extra prayers and well wishes we could get; this was one of them in particular that was wanted. Alex and I took turns playing with Indiana on the bed, then holding her and talking to her. I held her close, holding one hand as if dancing and tried singing in her ear before the words got caught in my throat, tears springing into my eyes. I shook my head still not ready to cry, it wasn’t time yet. Waiting for the surgical team to take Indiana away I’d say was the worst part by far. The more time that passed, the heavier the pressure felt in my chest and the louder the internal screaming became. I haven’t been away from this baby for more than maybe two hours in her entire lifetime. And I was starting to feel the reality of it settle into my whole being.
All at once, the entire surgical team (coming from Boston’s Children’s Hospital) entered our triage room with pleasant smiles on their faces and approached us delicately. A woman stepped forward, introducing herself as one of the scrub nurses who would be communicating to us from the operating room. She was my new best friend as she became the link between us and Indiana. We met the anesthesiologist fellow who was a very smiley, easy going guy and also the surgical fellow working along side Dr. Finn-Thompson, who was quiet but very polite. Kateri, the nurse-practitioner that works with Indiana’s cardiologist, Dr.Benavidez, had come to see us earlier and was a welcoming face to us. I always felt comforted by her presence as her entire being just was “mom” and when she spoke to you, it’s soft and warm and you just instantly feet relaxed. Indiana knew her right away, one of the familiar faces that she liked and beamed at her, showing off her two dimples. Dr. Finn-Thompson also said hello to us, a quiet confidence and humbling guy who approaches everything very chill, relaxed.
Then it was time. The anesthesiologist whom we had met before, Dr.Schure, stepped forward as she was the person we would be handing Indiana to. Alex held Indie first, giving her extra snuggles and talking to her out of earshot from me; I didn’t need to know what he was saying, that was his and her moment. He handed her over to me and I gripped her tight, the flood gates I could feel were coming close. I don’t remember what I said to her in the moment except I knew it was words of comfort and that I’d see her when she came back to us. I turned to Dr.Schure who gave us a reassuring smile and walked into the hallway as they did a quick huddle, discussing what would be next. We watched as Indiana looked at each face, quietly observing and not crying, not one tear was shed. I think I would have lost it if she looked back at us, wondering why this woman was splitting us up.
We watched as their huddle ended, the circle dispersed and headed off down the hallway, out of our line of sight. I took a deep breath, turned to Alex and promptly sobbed into his chest for I don’t know how long. There are no words I can describe ob what it’s like to hand over your child to a complete stranger. To put all your hopes and confidence into a group of people that were going to put your child to sleep. The surgeon would make an incision in the middle of her chest and open. They would put her on bypass, stopping her heart: clinically dead for at least a half hour. The team would work on that tiny heart, patch it up, take her off bypass and hope that the tiny heart beats on it’s own. If so, then they’ll take the time to close her up, take an echocardigram and make sure it’s all looks good. Afterwards, she’ll be more machine than baby, covered with tubes and wires. And finally, bring her up to the PICU (Pediatric Intensive Care Unit), where her parents will be eagerly waiting with baited breath. Can you imagine what that’s like as a parent to know this is happening to your child?
Everything I had kept pushed down into a little black box spilled over and came out all in that moment. Not having my baby within my vicinity was gut wrenching and felt like I temporarily lost my child. I immediately fought the instinct of marching down the hallway and grabbing her saying, “Forget it, give her back.” Obviously that was not the right course of action; these were all normal feelings of a mother just wanting her baby back. I fought the urge throw up, my mouth watering as a clear sign that it could be just around the corner. Everything inside was shaking, my teeth were clattering when I clenched them together and it took all I could do to not lose complete physical control of my body. As I clutched Alex, surrendering to my emotions, my mind went over everything I had done since the beginning.
- Staying healthy, eating right and carrying her safely in my belly for exactly 40 weeks.
- Going into spontaneous labor the day she was due, then 26 hours later doing a successful VBAC delivery.
- To receiving the diagnosis hours later and realizing just how serious her heart condition is. Even more so when the genetic tests all came back negative. It was just a case of “bad luck”.
- Working diligently for three whole months to make sure:
- She ate every 2-3 hours, waking her up from a sound sleep so that she got at least an ounce of formula.. because cardiac babies burn calories faster than others. I was dubbed early on as the “Feed Queen” as she truly ate well with me, if she ate at all.
- Took her Lasix (a diuretic to keep her lungs clear as possible) 3x a day and her Zantac (acid reducer) 1x a day. She hated doing this.
- She NEVER got sick, never had any infections, nothing. To almost be sterile because illness wreaks more havoc on CHD babies vs normal babies.
- Watched for any color changes, any fevers, any signs of congestive heart failure. Anything you watched for a normal, healthy baby, it was 10x as terrifying for a cardiac child.
- Questioned all the time. “Is she sleeping because it’s the normal newborn thing to do or it’s the VSD?” “Is she eating less because she’s just not hungry or it’s the VSD?” “Is she congested because her lungs are filling up faster with blood, is it a cold or is it allergies?” “Is she coughing because it’s allergies or it’s her lungs filling up with blood?” Those were just some of the daily questions that any heart parent thinks about every day of their lives.
All of that led up to to the moment I handed her off to Dr.Schrue and it was officially out of my hands. I have a problem with not having control of things, I’ll be the first to admit it. Not knowing what was going on in that OR room for x amount of hours (5 hours she was gone, to be exact) was a nightmare for me (and Alex, of course). I sat down on the chair, still in the triage room after being handed a glass of ice water by the nurse.
Did I do enough? I had to believe that it was. I did everything possible short of just handing her my own heart, which I would have. I took a few sips of water, looked at the clock and then at Alex. Minutes passed before I took another deep breath, wiped my eyes and stood up. Enough now. Time to lock away what was left, become the rock again and wait for the first phone call stating surgery had begun.
Keep your heart strong.