That We Might Have Joy: Mary's Story

Emery was first diagnosed with congenital heart disease at our 18 week gender ultrasound. Ty and I went in very excited to find out if we were having a boy or girl. The appointment went like any other; we were told we were having a little girl. Ty and I were so excited. The ultrasound tech was kind of quiet as she kept looking for what seemed like forever. She was having me roll over to each side saying that she needed to make sure she was seeing everything she needed to see. After what seemed like forever she excused herself, and a couple minutes later, she came back with our doctor. He started looking very intently, so we asked him what they were looking at. The doctor told us they were looking at her heart and wanted to make sure that everything was okay and that he was having trouble seeing everything because of the way she was positioned. After a while, the doctor put down the wand and told us that our daughter had a hole in her heart. He told us that we would need to go see the pediatric cardiologist the following week and that our baby girl would have to have surgery on her heart 3-6 months after she was born. He drew us a picture and explained that she had an atrioventricular septal defect meaning that the hole was positioned evenly between all 4 chambers of her heart and that she had one common av valve instead of the right and left like a normal heart has. He also told us that heart defects are a marker for Down Syndrome and that they wanted to do further testing. Ty and I agreed, so I had blood drawn from my arm. They were able to look at Emery's DNA that way. We left the appointment devastated and went home not knowing what to think. The day before we went to see the pediatric cardiologist we got a phone call where we were told our daughter's test had come back 99% positive for having Down Syndrome. I hoped and prayed that she would not have Down Syndrome because that wasn't something we could "fix", her heart could be "fixed," but she'd have to live with Down Syndrome forever.

The rest of my pregnancy was consumed with doctors appointments (I had 3 appointments a week for the last 8 weeks of my pregnancy) and brochures, paperwork, stress tests, and loads of information ranging from Google searches to blog posts to advice from other moms whose kids had a similar diagnosis. Although it was stressful, once the initial shock wore off, I allowed myself to get very excited to meet our little girl. We had named her Emery shortly after she was diagnosed, because we needed a way to hold onto hope that she would be okay, and giving her a name seemed like a good place to start.

When Emery was born I was shocked at how perfect she was. The doctors had warned me of what could happen. I was induced only because we needed to have a full NICU staff ready to step in if she was in distress once she was born. She wasn't. We spent the whole day with her. They took her to the NICU at 8 pm that evening because she needed some supplemental oxygen to assist in closing the PDA (All babies are born with it; once they breath in oxygen it closes. With Emery's other defect, hers did not close on it's own.) 

Emery only spent 5 days in the NICU, and then she came home. Even after we got her home, we had special appointments and obligations because of her health. We couldn't take her to church or into public places, because it was and is very dangerous for her to get sick. I was okay with that, because after her surgery, we would be able to move on with life and visit family and get back to normal or at least normal with the 3 of us. Emery had her open heart surgery the day she turned 12 weeks old. There are certain days in your life that you have a picture perfect memory of. Some things are so significant that the rawness of it never really wears off. Before Emery's surgery I remember just sitting on the couch holding her and crying because it was getting closer and I was so scared to send her back with strangers that would stop her walnut sized heart and cut it open in hopes of repairing it and giving her a future. The day of her surgery started too early. We had to be at the hospital at 5 am so we got up and 3:45 (I had gotten to bed just over an hour before it was time to get up, because I had to make sure I had everything in order). Emery was not impressed, but we let her stay in her pjs, and once she was put in her carseat she went straight back to sleep. We got to the pre-op area and I was surprised there were so many people waiting to send their children back to get operated on. Emery was the only one waiting for open heart surgery out of the crowd. 

We waited for what seemed like forever before we were pulled back into a pre-op room, where we put her in a greenish gown and white socks. She wasn't allowed to eat, and she was really fussy, so they allowed a pacifier with some sugar water stuff on it. That calmed her down enough to go back to sleep. They sent us to the room that Ty and I would wait in while she was being operated on, and then about a half hour later, they came to pick up Emery and take her to the operating room. I gave her one quick kiss and laid her in the nurses arms, because I knew if I held on any longer I would never let go. I told her that someone would be there the whole time to hold her hand, and that when her heart was whole, they'd bring her right back to us. The beginning of surgery went really well, in fact, the whole surgery went perfectly as planned, until she was to come off of the bypass machine. Emery's heart was not strong enough after her surgery to come off of the life support; they tried 3 times. The nurses came in and told us that she wasn't stable and that she needed all of the prayers we could get and that we needed to research what an ECMO machine was because she'd be coming out of surgery on it. Ty and I did our research and waited for what seemed like forever. It was about an hour later that we still hadn't heard, so we went on a little walk just down to grab something to eat. We walked down the hall, and when we came back, Emery was in the hallway, and they were trying to get her onto the elevator to go up to the PICU, but she didn't fit in the elevator with all of her equipmen,t so they had to go to a different one. 

We practically ran into her and about 10 people who were working on her while they were walking her down the hall to the PICU. There were alarms sounding and it was very hectic. We weren't able to see Emery for at least another hour following that, because they had to get her all settled in her room with all of her equipment. While she was on ECMO, she had 2 nurses in her room at all times. One nurse had to be facing her at all times. For the first 3 days Emery got a blood transfusion at least every 2 hours. Her chest was open for 6 days. They tried to take her off of ECMO on day 4, but she was not ready. It was extremely scary, because she was ice cold, pale and her feet and hands were turning purple and black. We knew she couldn't stay on ECMO much longer and on the 6th day she was successfully weaned.  They closed her chest the next day. 

She was doing very well, and they were hopeful to remove her breathing tube. On the 11th day post surgery, they took her breathing tube out, and they had to put it back in 20 minutes later, because she was in distress. We got to hear her cry that day. That was the last time we heard her cry, until she got her speaking valve on June 17th.

I won't go into all of the details of Emery's hospital stay because it's exhausting. She had X-rays, medicines, blood draws, and therapies daily. She got very sick following the first time they tried to remove her breathing tube while in the hospital. Emery was septic twice, had to be put on an oscillator, developed chylothorax, had 4 chest tubes, 3 central lines, 3 art lines, 7 pic lines, and too many IVs, She was intubated until January 14th when we decided to send her back into the operating room to have a trach and g-tube placed. Ty held her once and I held her twice between November 19th and January 21st.

While the trach was never planned, we anxiously accepted it, because it was what Emery needed to be able to be held, to wake up, and to start being a baby. She did it so well! Despite withdrawals, pain, and countless other life size hurdles for a tiny baby she woke up every day and fought; so I woke up everyday and fought with her. We had so much support and love from our new friends in the PICU. The nurses, doctors, RT's, and everyone else made me feel like they came to work everyday to take care of us. Despite everything else that goes on in a PICU, I never once felt like they didn't go above and beyond everyday to make us feel loved and at home. They truly loved my daughter and fought right along side her every step of the way. They truly believed in her. They gave me the hope each day that I needed to keep my spirits up. They are our angels.

We started sprints off of the ventilator at the end of February. We started very slowly at first, 30 minutes a day. We worked up to 2 hours, then we went for 2 hours twice a day, then to 3 times a day, and so on. By the time Emery left the PICU, she was sprinting 3 hours 3 times a day! We went to another hospital for rehabilitation, because she was not ready to come home yet. Today, Emery has been off of the ventilator completely for almost 2 months. She's eating by mouth, saying "mama" and "daddy," sitting, and standing. She came home about a week ago, just 11 days short of a year in the hospital.

Currently, with Emery, we are still dealing with effects of her open heart surgery in the form of mitral valve regurgitation, different degrees of chronic heart failure, pulmonary hypertension, chronic lung disease, stage 2-3 kidney disease, and hypothyroidism. 

I am so unbelievably proud of Emery for the demons she has overcome this past year. It's an overwhelming feeling. I could not do what she has done. She has overcome challenge after challenge with grace and composure. I share this story, because I get asked all the time how I am so happy and how I can keep going after all that we have been through. I really don't understand it completely myself, because sometimes I am overwhelmed, discouraged, tired, and selfish, but I have seen others that are going through far worse than I can ever imagine. I see how blessed we have been. I can see how Emery has blessed my life and many others as well. I can see that she has a purpose. I can see how much she is loved, and going through all of this, I have developed an unbelievably strong bond with my daughter. Through this, I have been able to see that I have a purpose and the unbelievably strong bond that Heavenly Father has with me and with each one of his children. I have learned that people matter and that everyone has a cross to bear, and no one's cross is any less significant than another just because they are not the same. I know that Heavenly Father wants to help make our burdens lighter and that if we lean on Him and allow His peace and love into our lives, then we can find happiness, even in the midst of our worst days. Emery shows me this everyday by waking up with a smile on her face ready to greet whatever her day has in store for her. Happiness shouldn't evolve from things or places, so we should be able to find happiness everyday no matter what we have or where we are just by being with the people we care about most.

Life isn't always perfect; it can be scary and dark at times, but the hard times help us appreciate more fully the light that comes. I found joy this past year by not focusing on the dark, but paying more attention to the good in each day. Although Emery is sick, she is still growing up and I find joy in being here with her, helping her live the life she has been given.

"Focus on the journey, not the destination. Joy is found not in finishing an activity but in doing it."
Greg Anderson

No comments:

Post a Comment