Keeping a Young Heart Beating

By Chad Binette

 

It was already 5:45am on May 18th; how it came so fast eludes me. Abby, both of her parents, my Auntie Karen and Uncle Ronny, and I were off to Boston to go to Children’s Hospital for a long day of pre-surgery tests. We met Mémère and Pépère on the Mass Pike, picked them up and then we all drove in together. Abby and I sat in the way back of the Explorer where we hung out and she played a fishing game on my cell phone. Abby had a long list of tests today, getting scanned, poked, swabbed and meeting with doctors.

Abby was born with a congenital cardiac defect called complex Tetrology of Fallot in 1999. This meant that she was born with a few parts missing from her heart and some extra parts she did not need. At three months she had open heart surgery and the doctors did what they needed to do at the time to keep her healthy. Abby was a big-headed, brown-eyed, beautiful baby girl and at the time of her birth we were neighbors. I spent the first two years of Abs life playing with her holding her and loving her right from the start. Our families were and still are incredibly close; sometimes I don’t know if I have two parents and three brothers or four parents, three brothers and two sisters.

I came to the pre-surgery because Abby had asked me to come with them; it was a hard time and a big realization for me that the surgery was actually going to be happening the next day. My main goal was to keep Abby smiling and enjoy every brief minute I got to see her in between tests. She would go and get a CT scan, get blood taken or meet with the anesthesiologist and then come back to me. Every time she came back smiling it would cheer my heart right up, and I know she loved seeing me, too by her ear-to-ear smile. We would joke and fool around and at one point one of the nurses said “I have to ask, are you two brother and sister?”

Abby also has a little sister Emmy, and they are very much opposites in many aspects. Em is very outspoken, bold and likes to push the limits, whereas Abs is quiet and reserved. Emmy loves being in control and likes order; she very much tried to keep everyone sticking to the rules, though sometimes she feels they don’t apply to her. She is quite the character and is very funny sometimes; she loves her sister a lot but would never admit it. Em is a lot like her father. Her father is an iron worker foreman who tends to take charge in everything he does.

Pre-surgery was finally over and we were heading back home. Both Abby and I were exhausted; I hardly slept the nights leading up to pre-surgery due to thoughts of Abby weighing heavy on my heart. It was a stressful day and after dinner was done, I could barely keep my eyes open. If you looked into Abby’s eyes you could see her exhaustion. As I went and lay down on the sofa Abby came and laid next to me; we both feel asleep for over an hour together. Mémère said “You two looked more peaceful than you have in a while.”

Abby’s dad is one of the hardest working men I know. He puts on a tough front but is one of the most genuine role models in my life. He is a worrier but would never openly admit it. He told me about a conversation he had with Abby prior to surgery. He said to her, “Abby, during your surgery you need to fight, you fight and fight, and I’ll be here waiting. Your body is strong and if your head tells you to get better you will.” He is one of eight and has lived most of his life in the Worcester county area. They’ve also owned a summer house just over the border in Connecticut on a lake for over ten years, which is where I tend to spend most of my summers.

When we left the hospital Abby’s surgery time was set for seven the next morning which would have been good, an early appointment so not a lot of time to dwell on it. However, then the time was pushed back to noon and once again to 10:30am. We all had to go to sleep that night and I’d be surprised if any of us had slept more than a couple hours due to the anxiety of what the next day would bring.

Abby’s mom and I are very close; she has helped me though some of the hard times I’ve had and I have been blessed to have her in my life. Although Karen is a home-care traveling nurse presently, she has worked many other jobs in the nursing field. She had actually spent a few years as a child-life specialist at Children’s Hospital and handpicked Abby’s cardiac surgeon, Dr. John Mayer, because he is one of the best around. My aunt was working at the hospital when he performed his 9th to 21st heart transplant.

The morning of the surgery finally came and I felt so anxious. I took a shower and like the past couple weeks I cried in the shower once again. I recomposed myself for the long day to come. I met up with Abby at her house to ride into Boston with her and her family. When I arrived there, Emmy’s teacher was picking up Em to drive her to school to try to keep her relaxed. Em was a mess however and was crying. Auntie Karen was also being relatively emotional and I was entirely choked up. Abby had drawn Emmy a picture to keep under her pillow in case Emmy missed her sister.

The school system of the town which they lived had given their full support and help to my family during this hard time. On Abby’s last day of school her class threw her a surprise party and everyone made her cards. Some brought presents and they had cake. All of Abby’s former teachers had a dozen balloons sent to the hospital. They had also made a plan since Abby couldn’t return to school after her surgery that her teacher would come to her house and tutor her there to catch her up on her studies.

Abby and I hopped into the back of the Explorer we were laughing and hitting each other with the balloon. Back to Boston we drove. For close to a 90 minutes we were being goofy and just feeling carefree, if only for those moments. While sitting in traffic on the way, Abby ended up falling asleep while I massaged her to relax her. She woke up just as we are getting to the hospital and we meet up with “Abby’s Entourage.” There supporting her was her grandmother “Jeanie Beanie,” Mémère and Pépère, her aunts, Lisa, Nancy, and Peg, uncles, Rob and Craig and of course her parents. Abby managed to bring in quite the crowd of support.

Abby and I have a very unconventional relationship, though we are just merely cousins with a difference of 10 years between us there’s a lot more than just that. Abby and I are kind of a hybrid mix between cousins, siblings, and closest of friends. She looks up to me in such a way that makes me want to be a better person for it. We have unconditional love for each other that can only be described as pure. I would go to the ends of the world for that little girl and I know without hesitation she’d do the same for me.

Our bond started at Abby’s birth. I was home-schooled and she was my new-born cousin who conveniently lived just up the street. The first time I held her I knew she was something special; I was twelve years old and she was just the most beautiful baby I had ever seen. I remember sitting there in a big chair holding her for the first time; we had to wear the surgeon masks as to not spread any germs to Abby and her weaken immune system. I remember trying to be ever so delicate. I recall looking at her with her eyes closed; she didn’t have a lot of hair and her head was her biggest body part. Ever since that first time I held her I was in love with my Abby. I would get up at 5:30 am, finish all my schoolwork by 10:00 am, walk to my aunt and uncle’s house to spend the rest of the day with Abby and her mom. On most days I’d stay for dinner then walk back home and do it again the next day.

If I didn’t go to my aunts and uncles home, my aunt would assume that something was wrong. I spent about five days a week there watching Abby grow right before my eyes. I loved holding her, playing with her and watching her first smiles. She would reach for me over everyone, and when she’d cry, she’d want me to hold her.  I was able to see her first steps and to top it all off, my name was one of her first words; she called me “addy.” Moments like those just drove my heart to love her more. We would play for hours and hours. I would carry her around and entertain her for all her waking hours. I did this pretty much for the first two years of her life, and I think that it was this time that had created and solidified our bond for one another.

We waited for further directions as to where Abby would be going to next. My goal for the morning was to stay strong for Abby. Abby’s Entourage kept us all amused for the time being. We finally got to meet the surgeon. When I saw his hands I knew they were going to hold my baby girls heart and it scared the hell out of me. Reality hit me like a bomb. I wanted to cry all the worry away, but I stayed strong for Abby. I hadn’t really seen any reaction from Abby the whole time. After this meeting however Abby finally broke down, she was holding her mom’s hand and she just started crying. She fell into her mother’s arms, and that killed me so I fell into my mothers arms and wept. I remember that I just kept saying “Not my Abby, not my Abby.” After getting that out we finally pulled it together. Abby’s dad took her on a walk around Children’s to look at some of the artwork on the wall. Once she came back we played on the arcade games for a bit to clear our heads and then Abs sat on my lap for the rest of the time that we waited.

Back in January, when I first found out that my Abby was going to need surgery I curled up in my room, alone and cried for quite some time. Why Abby? A heart that pure couldn’t possibly be broken. I would have given everything to switch places with her then and I still would now. Recently, I have been crying in the shower most mornings, I felt like it would wash all my sorrows away then I’d get on with the day.

It was after one in the afternoon and most of Abby’s entourage headed down for lunch. I waited with Abby, her mom and dad, my mom and Aunt Nancy; we were all very hungry and only Abby actually wanted to eat out, but she couldn’t. Then all at once a woman came and took us upstairs where we split up. I grabbed Abby first and told her I loved her, that I would be waiting for her and that I would be there all week so we could hang out. She then went with her parents and I went to the surgery waiting room.

Waiting in the waiting room was grueling; minutes seemed to pass as hours, hours felt like days. The only benefit was that my family, especially my uncle Craig, is very funny. He can somehow bring a party to a funeral and find smiles in the darkest of times – definitely the type you need in the waiting room with you. The waiting area was a very nice place as was everything at Children’s. Our group was quite a bit larger than the others there, so we ended up taking a semi-private room, since we are quite a loud family it was probably for the best.

It felt as time had stopped, when the conversation died and my mind was entirely focused on Abby. I was on the verge of tears. Finally after what seemed like a of couple days but was in fact merely two hours, they told us how Abby was doing. They explained that she was all prepped and they were ready to start the surgery. I couldn’t believe it. Two long hours in a panicked state-of-mind and she hadn’t even started the surgery yet. We were surprised that it hadn’t begun yet but continued to wait anxiously.

My uncle Craig took me aside and taught me how to do a magic trick. Soon, we had the whole room in awe with the trick. That’s just the thing that my uncle does best – keeping a group entertained. He has a side part time job as a DJ for parties, weddings and gala events.

We went back to waiting and the surgery continued to weigh heavily on my mind. Long blank stares came out from me as thoughts running through my head were a lot of what ifs. I was just hoping that my Abby was going to be okay. We continued to talk to pass some more time as a couple of more painfully long hours went by and they brought us the news.

We were told that “Abby was just about ready for her bypass” which meant simply that they were going to shut her heart off. I remember thinking that I hated every thought of that idea as the room fell deathly quiet; my biggest fear was what if they can’t get it started. Everyone in the waiting room was thinking the same thing, worried and in tears, or on the verge of tears. Roughly ten minutes after they had given us the news that she was ready for her bypass, I had chills shoot down my spine and I knew her heart had been stopped. The thing about stopping a heart is that there is no guarantee that the heart will start back up again. Abby’s grandmothers started reciting a Hail Mary. I, not being catholic, was taken aback by this. I had never heard anything like it.

The room was cold. I was dying on the inside and the echoing repetition of the Hail Mary was adding to the internal tension that I was feeling. Mémère would say “Hail Mary, full of grace. Our Lord is with thee. Blessed art thou among women, and blessed is the fruit of thy womb, Jesus.” Then Abby’s other grandmother would follow immediately with “Holy Mary, Mother of God, pray for us sinners, now and at the hour of our death. Amen.” This continued over and over, again and again. All the time I could only think about Abby, Hoping her heart would turn back on. The only stability in the room was the continuation of the prayer.

The next hours dragged by even slower than the previous hours. Not a whole lot of talking occurred, just hopes and prayers. Around 6:10pm Abby’s dad, uncle Rob and pépère went for a little walk and got some coffee. At 6:18pm the woman came in and informed us that “Abby has come off bypass and her heart is beating.” We were also notified that she was still really cold but they were warming her up. I ran across the room, grabbed auntie, hugged and squeezed her and said “She’s gunna make it, our Abby’s gunna make it!” We held each other and cried the happiest most exhausting tears of joy. Everyone in the room was crying, there wasn’t a dry eye in the room. I thought to myself, this could be one of the happiest moment in my life.

Abby with her aunt and uncle, after the surgery.

It was about nearly eight in the evening when everyone started leaving. Abby’s condition was stable and she was in the ICU – the Intensive Care Unit. Everyone had left by 8:15 except for Abby’s parents and myself. My body was exhausted, my mind was drained, but all that mattered was that I wanted to see my Abby before I left. For some reason cousins aren’t allowed into the ICU so I signed in as Abby’s brother. Finally, at about 9:05 pm I was able to see her, but I was not ready. I walked into her room and was immediately shocked at what I saw before my eyes. Her face was puffy from the surgery, a lot of her body had stains of iodine, there were roughly ten computer monitors keeping track of all her vitals. She had what seemed like 30-40 wires and IV’s coming out of her at all points of her body. She was being fed oxygen with a breathing tube which filled her whole mouth.

As I walked in I was standing at the foot of her bed as Abby’s mother and father casually talked to her. I was speechless. I was taking it all in couldn’t understand that “this” – all of these machines keeping her alive was progress. After a couple minutes of just watching I began to feel a little dizzy. My aunt told me to come over to her side and talk to her so I did. As I walked closer and closer I could see how swollen her hands face and body really were. I was afraid to touch her in such a fragile state, but I finally held her hand. Her hand was cold, puffy and soft, her face was so swollen and her color was off. I couldn’t find my voice; I was in shock and getting really dizzy. I stumbled out of the room, fell into the door and then hurried to get out of sight where I finally fell to the ground and cried.

I wasn’t ready to see my Abby hooked up to so many machines. I was so exhausted I just couldn’t think anymore. My aunt found me and tried to comfort me by saying that Abby’s doing really well, that they couldn’t have been happier with how she’s coming along. I told her I didn’t like seeing her like that and she informed me that after her first surgery when she was a baby she blew up like a balloon so this was hardly any swelling compared to that. After a couple of minutes I pulled myself back together and went back into Abby’s room. I stood next to her and held her hand and arm trying to help her warm her body back to temperature. (When they do open heart surgery, they cool off the body because it’s less likely to have complications and has a higher success rate.)

I finally found my voice and I said “Hi Abby. It’s Chaddy. You look so beautiful, I can’t wait to talk to you later. I’ll be here all week, I love you.” It was hard to talk to her in that condition but I did. I stayed another 15 minutes until they had to take out some drainage tubes attached to her outer abdominal area.

My uncle then walked me out of Children’s where I had a friend picking me up. I have been blessed to have friends who lived a short distance from the hospital, just a little over a mile away in Brookline. They allowed me to sleep there for the next couple of nights so that I could spend the days with Abby.

When the next morning came I was up pretty early, but visiting hours weren’t until noon, so I had time to kill. I took a walk around Boston and grabbed some food before walking to Children’s. I waited a couple of hours in the hospital and finally the clock struck noon and I could see Abs! She looked great! She didn’t say a lot but I managed to squeak out a smile from her face when I “mooed” at her and she couldn’t have been more beautiful. She smiled at the sound I made because she had a bovine, aka a cow, valve to replace her missing one. She is one tough kid, she was walking within 24 hours of surgery. By day two we went for a walk outside and a few days later she came home.

Chad and Abby, two days after the surgery.

Abby normally spends most of her summers in the water but this year she was stuck on land. It was very hard for her to sit on the sidelines and watch all of her sister, cousins and friends swimming about and having fun. She did manage and received the best news in August; she got the “okay” from her cardiologist to go swimming and she couldn’t have been happier.

Abby is currently doing better than we could have hoped for. She has recently been given the clearance to start competing on the swim team and to do block starts which are diving starts. She has also been preforming very well in school, earning straight A’s. Prior to her surgery her heart was pumping at less than 60 percent efficiency. Her heart is pumping significantly better now. Some might even say that the higher grades in school might be coming from the increased amount of oxygen that is reaching her brain. Of course this is all speculation but there seems to be some strong correlation between the two. She is a wonderful person and a true inspiration in my life.

 

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