We are honored to have Zoe's mom, Tashina, sharing on the blog with us this month to celebrate Zoe's birthday month. They have been through the unimaginable in their CHD journey but are working hard to create some beauty from ashes. Tashina has a heart for helping other families through their own CHD journey created a fundraiser this month in her sweet girl's memory. If you'd like to help support their efforts to raise money and awareness for more local heart families you can click here.
Since the beginning of my pregnancy, I had been considered as high risk, due to my age and because I was on bed rest due to complications in the first trimester of pregnancy. I went to an appointment to have a nuchal translucency scan, and it was around 15 weeks of pregnancy that my husband and I found out about Zoe’s, down syndrome diagnosis. After a series of blood tests, it was confirmed a few weeks later. Around 19 weeks of pregnancy, and a very in-depth ultrasound, we were told the gender. When my husband and I were told that we were expecting a girl, I was elated!! I have a 7-year-old daughter named Alexis and saw this as such exciting opportunity for her to welcome a baby sister. In that same appointment, we were told that she had a Congenital Heart Defect that was noticed on the ultrasound. This bit of news completely shattered our world. Every fear crept in, during those moments. We were told the name of her heart defect: Complete Atrioventricular Canal Defect, with an AV Valve Regurgitation. My husband and I had no idea what this meant for our baby girl, so we made the decision to just continue praying and hoping. After this appointment, it was determined that it was necessary for me to have an appointment with a Pediatric Cardiologist, and that it was also necessary for me to transfer to a different Obstetrician’s office so our baby could be born at a hospital with the specialty care she would need. The high-risk doctor determined that it was best for me to deliver at 38 weeks, by induction because they wanted to make sure that all would remain well with Zoe. Well, she decided to come 2 days earlier on Tuesday May 25th, 2021, at 6lbs 5oz. We were super excited about our baby girl. The delivery was seamless, with no complications. The NICU nurses were in the room, and they were instructed to bring her to NICU. The Doctors checked Zoe out in the NICU, cardiologists were able to also see her, and they noticed the defect there, but things looked about the same with her as it did prenatally.
Fast forward to 5 weeks later in June, she was not gaining or eating well, which is considered ‘failure to thrive.’ She remained at 7 lbs. for at least 2 weeks. The pediatrician decided that it would be best for my husband Ben and I to bring Zoe down to the hospital to be checked out further. We bought her in, and different tests were sent off to see what was happening. Zoe would become very tired and worn out from drinking bottles and would start working hard with her breathing. A NG tube was placed, to give her a break from the working with bottles. A week later, around early July, she was transferred to the CVICU (Cardiac ICU). When we arrived on the floor, we were told a week later that she would get a heart catheterization and a series of other tests. To do this, they had to stop her feeds for a certain length of time before both procedures. The cath lab was designed for the cardiologists to get a closer look of her heart. Once a closer picture of her heart was seen, it was determined that a PDA closure needed to be done. Once that was done, it was decided by the team that it wasn’t enough to make a difference with her heavy breathing. During this time, we were also told that Zoe had a dilated(smaller) right ventricle, which meant that this one side could not work properly. The entire cardiology team had a conference with the cardiac surgeon, Dr Shillingford to determine next steps. The team decided to do a Pulmonary Artery (PA) band surgery on her heart at 2 months old. The PA band was designed to increase the resistance of blood flow, through the pulmonary artery. She wasn’t strong enough and did not weigh enough to withstand an actual open-heart surgery, so this was the only viable option that early on. Zoe was put under anesthesia and taken off for this surgery. The surgery took about 2 hours or so then she was put back into the room with a 1 to 1 nurse. The cardiologists reported that everything went well with the surgery.
The next morning around 2am on July 27, 2021, the unimaginable happened. Zoe became quite fussy just before her feeding, while the nurse was preparing her bottle. She held her breath, bared down, her heart rate dropped, and she went into cardiac arrest. At the time, I decided to stay at the hospital overnight, to be with my girl, so I was in the room to witness the whole entire scene. At the time I had no clue as to why so many doctors and nurses came flying into the room so suddenly. I just sat there in shock on the makeshift couch/bed, in the corner of the room. I felt puzzled, confused, afraid, numb. I remember a nice Chaplain came into the room and sat with me. Next, a nurse rushed over to us, apologizing stating that they needed me to just go out into the family room. I remember the chaplain sat in that cold room with me for hours. Once the cardiac surgeon, intensivist, and nurse practitioner came in to speak with me, I was told that she coded for an hour, and was resuscitated eventually. Dr Shillingford was able to perform a manual heart massage at bedside, after opening her chest back up. In essence, God used the Doctor to save her life in that moment. It was a true miracle.
From that point forward, it was a rollercoaster of emotions. Zoe was on ECMO for 3 weeks and was intubated on the ventilator for about 4 weeks. However, the team emphasized that she would remain on the ventilator at least until her lungs became stronger over time. Eventually, there came a point that my husband, Ben, were faced with the decision of a tracheostomy surgery for her. She had to be extubated because of the risks associated with it, so it seemed like the most logical decision for us. It was difficult decision for us, but one that was made with much consideration and prayer. The surgery went well and was a good decision for her. She remained on the ventilator with oxygen and support. She was able to take breaths on her own, but she just needed the extra assistance from the vent. Once Zoe had the tracheostomy surgery done in September 2021, the next step was the g-tube surgery. The team, along with Ben and I felt that it would be best because it would give Zoe a break with “working” so hard during feedings. Once both surgeries were completed, and MRI was ordered due to the concern of Zoe’s neurological status post the cardiac arrest (from losing oxygen. After an MRI, it was concluded that she had severe cystic encephalomalacia, which was a severe brain injury that affected every part of her brain. It was discussed that her neurological status was such that it would affect certain things in the future like speaking, walking, sucking, swallowing, and other things. It was very disheartening learning all of this, but at this point we knew that her outlook was all in God’s hands.
The next several months after September, discharge was attempted multiple times, however Zoe continued to show signs that she was not ready quite yet. She was faced with blood infections, trach infections, had 4 pneumothoraxes (air on lungs/lung collapses). All of it was traumatic, and we felt as though we constantly lived on the “cliff”, as so many of the doctors accurately stated. She experienced many struggles, ups, downs, highs, and lows. She was on quite a bit of medication and had episodes pretty frequently. My husband and I were told that she was going into heart failure in December 2021, just weeks before Christmas. We were also told that she was not a candidate for another heart surgery. This factor was based upon the complexity of her heart defect, chronic lungs, the likelihood that she would not survive the surgery, along with her overall clinical status. This was very heartbreaking, but we continued to take our petitions and cares to God. We continued to speak with the staff about treatment plans, along with how best to navigate. The conversations became tough, when we were asked if we wanted to discharge home or remain in the hospital. Ben and I decided that the best place for Zoe was in the hospital, as least until she could become more stable.
In January, I sought out a 2nd opinion with a nearby Pediatric cardiologist team. After a few weeks, and discussing Zoe’s case, that team also made the determination that they would not be able to take on her case, due to the severity of her brain injury, among other things. Another heartbreaking moment. It just didn’t feel like real life.
In early March 2022, things really turned, and she began to have tachycardiac arrythmias. Her heart rate had drastically jumped all the way up to like 180s and once 200. A medication was prescribed to bring her heart rate down to a normal range, however, as with many medications you can take it for one thing, and other areas of the body can be impacted. In Zoe’s case, the medication prevented her heart from racing, but also lowered her blood pressure, which impacted her kidneys. She was then taken off this medication. We were called at 4:30am on March 10, 2022, and told that Zoe was breathing heavily, requiring a higher amount of support on the ventilator, she was edematous and had a lot of fluid that she could not excrete from her body. She hadn’t had a wet diaper in a few days because her kidneys were critical and started failing, which was very telling. The intensivist and another Doctor explained that she had 12-24 hours left. Her body was tired, she was weak, and she struggled. Medication was given to help with her pain. Zoe fought hard and went on a tumultuous, long journey. After a long fight, being brave, and strong, she went to heaven to be with God on this same day. Zoe’s life was for a purpose, and she was able to make an impact on so many people, during her short time here.
