Fighting with Every Beat of Her Heart

Fighting with Every Beat of Her Heart

written by Mandi, Aubrey’s mom

April 17, 2014 was the day our whole life changed. My husband, Paul, our oldest daughter Olivia, and I went in to find out the gender of our second sweet baby. We were so excited to find out that we would be adding another little girl to our family in September. The nurse had us wait for the doctor to come talk with us after the ultra sound. I had a few questions for the doctor as I was student teaching and there were some pretty crazy virus’s going around that I wanted to talk with him about. As we waited we called family members in such excitement that we were having a baby girl. Olivia, almost two at the time, was dancing around and so excited to play hide-n-seek with her new sister.

The doctor came in. His head was hung low and said, “We need to talk”. Within the next few minutes we found out that our daughter had a congenital heart defect. The right ventricle was not developing the way it was supposed to be developing. We were seen by maternal fetal specialists and a cardiologists within the next week. They both confirmed that our daughter, who we named Aubrie, would be born with Tricuspid Atresia, Hypoplastic Right Heart Syndrome and had a Ventricular Septal Defect (VSD).

Our hearts were broken and our minds struggled to understand that Aubrie was going to be born with half of a heart. We had weekly checkups with our maternal fetal doctor, and made occasional trips to the Heart Institute at the Children’s Hospital Colorado in Denver to be checked there too. In those five months, we began to create good relationships with doctors and other families who have children with congenital heart defects.

At the end of August, our doctors suggested that we re-locate to Denver, as we live in Grand Junction, CO- 4 hours away from Children’s Hospital. This was a precaution in case she decided to come early. Well, the day before I was to be induced, Aubrie sent us to the hospital. My amniotic fluid started leaking and when we went in to be checked, Aubrie’s heart rate started dipping. I was placed in a hospital room with many wonderful nurses at Children’s Hospital. It was a very long and nerve racking night as we prepared to become parents of a heart warrior.

September 3, 2014 and 6:56am, Aubrie was born. As soon as Aubrie breathed her first breath of air, I was able to see her and then she was very quickly whisked away. Aubrie was taken into a sterile room and nurses and doctors began getting vital signs and checking her heart and lungs. Because I had gotten an epidural I was not allowed to leave my room, so my sister helped me by facetiming. Paul was knelt down staring into a room that held so many questions. After all of her vitals were checked and she was stable, I was able to hold her for a minute. It was incredible. Then Aubrie was taken down to the CICU and within a few hours, I was able to be next to our sweet girl.

The first seven days of Aubrie’s life were spent in the hospital and she was not able to meet her big sister (talk about a mom heartbreak!). But, on day seven, the doctors decided that Aubrie was beating the odds and no longer needed to be in the hospital!! We were discharged locally in Denver. Aubrie had cardiology appointments at the hospital every three to four days to make sure that her heart was working for her. She was doing so well we had thought she was going to be able to skip the first open-heart surgery. We had an appointment Friday, September 26th and had such high spirits that they were going to allow us to go back home to Grand Junction. Instead of sending us home, we were told that Aubrie would need open heart surgery the next Monday at 8am. My body went numb. We knew and open heart surgery was going to have to happen, but until that moment comes, it is not comprehendible.

The night before Aubrie’s surgery we were to give her a bath and make sure her chest was sterile. We sat in the bathroom and just stared at Aubrie’s tiny body and unscarred chest. I don’t think Paul or I slept much that night. We just watched Aubrie sleeping in her bassinet and prayed.

September 29, 2014 at 6am we walked into Children’s Hospital. We signed in at the front desk, took the glass elevators to the third floor and pressed the button for an attendant in the pre-op area to open a door into a whole new terrifying world. The nurses kindly assured us that Aubrie was in good hands, gently scooped Aubrie out of the crib and walked away into the unknown. Tears filled our eyes and fear stormed our hearts. She was in God’s hands now.

Thankfully Paul’s twin brother, Michael and his wife, Laura surprised us to come sit with us. They brought a deck of cards and we sat in the waiting room, quietly playing cards and waiting for updates. Esther, one of the OR nurses, came out about an hour after they had taken Aubrie back and said everything was going great so far. It was 9am and they were about to cut open our daughters chest, talk about a surreal feeling. About thirty minutes later, Esther came back again, she said that Aubrie was doing so good and had not needed to be put on the bypass machine (the machine that pumps blood for your body when your heart cannot). A sigh of relief came out of our bodies; we knew that God and those doctors were doing everything they could to keep our baby alive. The third time Esther came out, she said that surgery went fabulous, Aubrie did great and they were going to close her up and check to make sure everything was in working order. When Esther came out the next time, we were expecting to hear the same good news as we previously had and get to see our daughter soon, but that was not the case. Esther told us that after they had closed Aubrie up and did and Echo, the shunt they had placed was too big and was kinked in a crucial spot. They were going to have to open her back up and start over. We were in such disbelief. Our sweet girl had to go through another open heart surgery? How is she going to make it through? Well, Aubrie is tough and she did just that! She made it through! After about three more hours, Ester had come out for the last time. Aubrie did wonderful, still did not need the bypass machine and we would be able to see her within the next thirty minutes.

The moment we had been waiting for all day came, we were told we could go see our sweet girl. We walked in and Aubrie looked so small, so helpless, and we noticed her lips were grey. We asked if this was normal, and the nurse said that she was going to ask us what we thought of her coloring, as all heart babies seem to have a different color tint. We said, no, this is not normal and within a matter of seconds we were being escorted out of Aubrie’s room and back into the waiting room. Doctors and nurses rushed into Aubrie’s room, took the crash cart with them and were moving all about as we watched from the windows in the doors. We were so scared. What was happening? Twenty minutes went by, and finally Paul had asked if someone could please come out and tell us what was going on. A nurse came out and he explained that Aubrie’s body was not tolerating the new blood flow very well yet and she needed to be on oxygen to help stabilize her lungs. We would be able to see her again soon.

When we were able to see Aubrie again, we just sat, in silence and hoped and prayed that, that was going to be the last of scary moments we were going to face. Sadly it wasn’t.

The next twenty four hours were rough for Aubrie. She was able to eat an ounce from a bottle a few hours after surgery. Her body unfortunately was still not used to the blood flow and there was not enough blood going to her digestive system. Her intestines started to die. This is called NEC. She was put on gut rest for five days, which means she was not allowed to eat anything for five days. This was to help her intestines heal and give her body some adjustment time. After the five days she was allowed to eat again, but her brain told her body to not do this because eating causes pain. And on top of really bad belly pain, Aubrie got a severe diaper rash, one so bad that a nurse, who had been working in wound care for 30 years, said she had never seen a rash that bad. These two factors made Aubrie refuse to eat. A feeding tube was placed in her nose and she would slowly get nutrients through that during the day.

Aubrie struggled to heal. Her body was weak and tired. She had a lung collapse. She couldn’t keep her oxygen levels up. She was in constant pain. We feared for Aubrie’s life. She had a few days where the nurses and doctors would not even step out of her room. They had to keep a close eye on her.

About a little over a month after Aubrie’s surgery, we were discharged locally in Denver. Her incision was still not healing well and she was still not eating much, but her health was good. The doctors thought that maybe out of the hospital she would heal and thrive. We tried so hard to get her to eat, we tried so hard to help her heal, and it just wasn’t happening. For the next month and a half we were in and out of the hospital often. During our time in the hospital, Aubrie had eye surgery (as there was a fatty tumor on her eye), and a g tube (permanent feeding tube through the belly) placed.

Finally, in the second week of December, the doctors grew concerned that Aubrie’s incision was not healing and asked for us to come in so they could see it. They gave us two options, one was that they would open her back up and wire her chest closed and let her heal. And the other was that they could open her up and do the second step, The Glenn of her three step heart surgery, that they were going to have to do the next month. We said that we should just go ahead and do the second step of the surgeries. There was no point in opening her up twice within a month of each other. Aubrie was now three months old heading into her next open heart surgery. Two days after her appointment, December 18, 2014, Aubrie went back into the OR.

Just like before we got the hour by hour updates. The Glenn is a little more of an invasive surgery, as the doctors began the rerouting of Aubrie’s blood flow. Aubrie did have to be put on bypass during this surgery, but did not have any issues with it. Aubrie rocked her surgery.

Although it had only been about two months after Aubrie’s first open heart surgery, it is NEVER easy walking into a hospital room, seeing your child connected to so many machines, and seeing their chest with a huge incision. I remember looking out of the window and praying that this time around would be less traumatic for our girl. Thankfully, it was.

Just five days after The Glenn, we were discharged locally. While Aubrie’s incision was healing much better this time, her pain was so severe. She constantly had to be held, rocked or bounced in her bouncer. If she wasn’t asleep she would just cry. It was heart breaking. We asked for stronger pain meds as she was only on Tylenol.

Since Christmas was just around the corner, we made our hotel room as Christmasy as we could. We turned our lamp into a tree by wrapping lighted garland around the whole thing and put our wrapped presents at the base. We had friends and family make us Christmas dinner and bring it in Tupperware and brought presents for our girls. We were so blessed to be shown the true spirit of Christmas.

On December 26, 2014 we had a follow up appointment and we were able to GO HOME!! All the way home to Grand Junction. We were given the go ahead and so we left as soon as our appointment was over!!

For the next five months Aubrie began to grow, and thrive! She was able to live her little life. She was able to get to know her home, her family, her place in this big world.

When Aubrie would sleep, we noticed that she would snore pretty loud. We noticed at times she would snort as she was just trying to breathe. When Aubrie would take some of her bottle we noticed she would pull away to catch her breath. We brought our concerns to our absolutely amazing pediatrician and she suggested we go to Denver and get a sleep study done. For the first study we had scheduled, Aubrie came down with a horrible cold. She was put on oxygen and the doctors suggested we wait another week before we so the study. They did not want the cold to affect her results.

A week later she and I went in. She slept pretty well though the night and we were able to get a good read. When her results came back, the doctors were shocked! Her adenoids blocked 90% of her airways!! So it was evident we needed to get those out! While we were getting a consult about her adenoids, the doctor suggested we get a hearing test done because she had multiple ear infections during the spring season. After the quick test, results came back that Aubrie had mild hearing loss. So, August of 2015 Aubrie went back into the OR, this time the general OR, and had her adenoids removed, tubes placed in her ears and a skin tag removed. These surgeries went quickly and well!

Winter hit and Aubrie was sick often, she was on and off oxygen. In February of 2016 Aubrie caught a stomach virus; she vomited seven times within an hour. Her oxygen levels were low and her coloring was grey. I contacted our pediatrician and she advised us to go to our local hospital. We were kept overnight and sent home on oxygen. She began to get over her stomach virus and then came down with pneumonia. We had a cardiologist appointment about a week after her pneumonia diagnosis and so went in thinking her oxygen levels were low because of her pneumonia. Our cardiologist wanted to do an echo on Aubrie to just make sure her heart was working ok after being so sick for so long. When he did, he noticed that where the surgeons did The Glenn, in her pulmonary artery, Aubrie was getting scar tissue. This was limiting the blood flow to her lungs. Because her blood flow was constricted, her body grew arteries to get blood from her heart to her lungs. This is obviously not a good solution, although we were thankful her body was working to compromise.

We headed back to Children’s Hospital March of 2016. The doctors there also agreed that the pulmonary artery needed to ballooned open and the extra arteries needed to be coiled off. Back to the OR Aubrie went. We were able to walk her through those big double doors this time. We laid our child on the operating table and left her in the care of doctors once again.

This surgery took longer than the doctors expected. She had grown twelve extra arteries which took them a little longer to coil off. As the doctors were looking over her heart, they noticed that the artery that takes blood to her right arm was extremely narrowed in one area. They ballooned this artery open as well as her pulmonary artery. Aubrie came out of the surgery in good spirits and was eager to get home to her big sister.

It is now October of 2016 and as we wait in anticipation for her next open heart surgery, next spring, we are so very blessed to have had the healthy and wonderful summer we did! Aubrie is a silly, smart, outgoing and happy child. She is one tough cookie-

I know she will continue fighting with every beat of her heart!!!

Posted in: Awareness, CHD, Heart Hero of the Month, Heart Heroes

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