That We Might Have Joy: Talia's Story

This story is about Amelia and the health issues she has, but for me, the trials, and joys, of being a mother started long before that. In January 2015, I felt like Aaron and I were supposed to start our family. I told Aaron this, and he agreed. We found out I was pregnant at the end of March, and I struggled to be excited. I had wanted to get my master's degree before we started a family, and I was simply following an impression. At my first doctor's appointment, we learned that the baby had died just a couple days before. I was alone at my appointment and had to tell Aaron the news by myself after he was done with his classes. We then had to call our parents, ultimately only telling our mothers and asking them to tell our fathers the news. I never knew my heart could break so much. However, as a result, Aaron and I had an opportunity to serve as ordinance workers in the Rexburg Temple for 6 months and I had the opportunity to work alongside sisters who were newly married, expecting their first child, and whose children were all grown. I learned so much from all these wonderful women.

In September 2015, we found out that I was once again pregnant. This time I was truly excited. I had experienced what it is like to be “baby hungry” for the first time in my life. As excited as I was, it was difficult. I was nauseous for the majority of my pregnancy and struggled to cook dinner and clean our little apartment. Luckily, I have a wonderful husband who knows how to cook and rarely complained about having to make dinner and try to find something I could keep down after he had gone to an entire day of classes and work. In December, we found out we were having a girl, and throughout the pregnancy, there were no concerns that she wouldn’t be perfectly healthy. We continued ahead with our plans to move to Tennessee the week before Memorial Day following Aaron’s graduation from BYU-Idaho in April.

On May 9, 2016, we welcomed Amelia Annis into our family. I had never experienced such great joy than at the moment I got to hold my perfect baby girl. I remember thinking she was tiny at 7 pounds, because most of my sisters had been over 8 pounds. We went home from the hospital two days after she was born with orders to get a bilirubin pad because Amelia was pretty jaundiced. We thought everything would be back to “normal” when we stopped needing to use the pad a few days later. However, just before her 2-week appointment, Aaron and my mom noticed a white patch on Amelia’s tongue. When we went to the appointment, we asked about the patch, and got no answer, as none of the doctors had ever seen anything like it. We were also told to start supplementing Amelia with formula because she had dropped from her 7-pound birth weight to 6 pounds 3 ounces. We weren’t too concerned since we already had a pediatrician lined up in Nashville, and we knew that it wasn’t going to affect our plans to pack, bless Amelia, and move a couple days later. Little did we know that our plans would drastically change the next day.

The day after Amelia’s appointment, I was taking a nap while Amelia slept in the afternoon. Aaron thought that he should check on Amelia and noticed that she seemed a little warm, so he took her temperature. It read 104 degrees. Aaron didn’t believe that was correct, so he checked himself and checked Amelia once again. He woke me up, and we talked about what we should do. I called the doctor’s office and they told us to take her straight to the ER, so that’s what we did. When we got there, the ER doctor was very concerned because Amelia wasn’t responsive and didn’t care that they were poking her trying to get blood, do a spinal tap, and start an IV. This was probably one of the hardest moments, knowing there was nothing I could do for her at the time. After they started an IV and some antibiotics, we were admitted to the hospital, taken up to the NICU unit, and put in an isolation room. It was hard to be put in a little room with two semi-comfortable hospital chairs, a bed for Amelia, and no windows or contact with other people in the unit, other than nurses, because we didn’t know if Amelia was contagious. It scared us seeing the nurses put on caps, special gowns, shoe covers, and gloves over their clothes to help prevent contamination. At the time, we were told that Amelia would probably just be in the hospital overnight, because the fever was probably going to break. At one point, late that night, we decided we’d go home and spend one last night in our apartment before we moved.

The next morning, Aaron dropped me off at the hospital and then went back to our apartment to help load the moving truck, since we expected Amelia to be discharged that day. However, when the pediatrician came and talked to us, he said that we wouldn’t be able to be discharged until Amelia had not had a fever for 24 hours. We had to cancel everything, including our flight to Nashville, until we knew that we’d be able to make our flight. Luckily, if you have a doctor’s note, they don’t charge you for cancelling. Instead, they’ll just rebook it when you can make the trip. That day was really hard as I called Aaron and asked him to come back to the hospital to be with me. I was emotionally exhausted at that point, because I was so worried about my baby girl. We felt terrible that so many family members had traveled for Amelia’s blessing. My grandmother and one of my sisters came up that morning from Salt Lake City, Utah; another sister and her family came the night before from Carson City, Nevada; and Aaron’s parents and youngest sister had flown to Utah from Houston, Texas and then driven to Rexburg. It was a blessing that, at one point, my dad and Aaron’s dad were able to come to the hospital and help Aaron give Amelia a blessing. We were also blessed with a visit from our wonderful bishop and his wife who were there in the NICU visiting another family in our ward. At this point we still didn’t know what was wrong or how long we would be there. Our bishop knew we were moving out of our apartment and didn’t have anywhere to go, so he made sure to notify our relief society president about our situation. Luckily, Aaron’s grandma lives about 10 minutes outside of Rexburg and offered to let us stay with her until Amelia was released. At the time, we didn’t really know what else we needed help with as we were still trying to wrap our heads around the situation. After Amelia had been in the hospital for almost 24 hours, she started having respiratory problems and had to be put on oxygen. Because they didn’t know if the oxygen was needed because of a heart problem, they had to do an echocardiogram, or ultrasound of the heart. We found out that Amelia has two small holes in her heart, but the doctors weren’t concerned because they weren’t letting a lot of blood through. The next day we started to get answers. Amelia’s blood cultures came back with no infection, so they stopped the antibiotic she was on. We thought that we’d be out of the hospital within a couple days because her fever had also gone down to less than 100 degrees. However, the next day the fever came back.

The doctors didn’t know why the fever came back, other than it was some type of virus. They decided they would need to take a spinal tap and have it sent out and tested for a whole bunch of viruses. I went out to the waiting room while the doctor did the spinal tap, and then the doctor ordered that we restart the antibiotic, as well as two antivirals because we were still waiting for one more blood culture, and those three medicines would cover most sicknesses. And this is when the real waiting game began. We literally felt like we were in limbo. We started seeing a neonatologist (baby specialist) once a week and continued to ask the nurses if they’d gotten the results. During this waiting period, we were blessed to be the recipients of service from members of our ward. We were brought dinners each night, which not only brought us some food, but also some much needed association with friends. We also had friends from the ward bring us cookies and ask us if we needed anything when they went to the store. Mark and Shalise will never know how much they blessed us by picking me up a small bottle of contact solution, as we struggled to know how we would make it financially, since neither of us had jobs, and Aaron wouldn’t be working until he finished his internship. 

A week and a half after sending out the spinal tap, we finally got a diagnosis. Amelia had herpes simplex virus (HSV). There are two types of herpes: Type 1, the one that causes cold sores and Type 2, the one that is sexually transmitted. We didn’t know which one Amelia had for several days, however, we finally learned that she has HSV 1 in the central nervous system. We’ve speculated about how she could have gotten it, but the fact is, we will never know. Neither Aaron nor I know if we have it, and we could be carriers but never have any symptoms. And Amelia came into contact with several people that we made sure to see before we moved. Luckily, Acyclovir, the antiviral for HSV had been started before we had the results, so we were already 10 days into the 21-day IV treatment.

In the end, Amelia was in the hospital in Rexburg for 24 days. The day before Amelia’s last day of treatment, they did another spinal tap to make sure that the HSV wasn’t going to make her sick again, because it is a virus that never actually leaves your system. Following the spinal tap, we noticed that the white patch on Amelia’s tongue had become a mass about the width of her tongue. The doctors all thought she just had what is known as a geographical tongue and discharged us without much concern. The day after Amelia’s discharge, we traveled to Salt Lake to finally finish our move to Nashville.

A couple days after we arrived in Nashville, we had an appointment with our pediatrician there to follow up after Amelia’s hospital stay. At this point, the mass on her tongue had grown to span the width of her mouth, and not knowing what it was, our pediatrician referred us to an ENT (ear, nose throat doctor) at Vanderbilt Children’s Hospital. He looked at the mass, did a scope to see if it was blocking any passageways, and decided to admit us so Amelia could be monitored because of the size. About four days after being admitted to the hospital once again, Amelia had surgery to remove the mass on her tongue. This was the end of June, and at this point, Amelia had spent more of her life in the hospital than out. The pathology came back as rapid-growing granular tissue, which means it was scar tissue that was growing abnormally fast. Even though it wasn’t much of an answer, we were satisfied because that meant it wasn’t a tumor or cancer. However, the doctors wanted an answer, and so they sent it over to the adult pathology and to the top pathology center in the nation. Everywhere came back with the same result.

The middle after Amelia’s surgery, we went and saw an infectious disease doctor, also at Vanderbilt, about the HSV because we knew that she would need to be on the acyclovir orally for a time. They adjusted her dose and told us she would be on it until she was 6 months old, which seemed like forever at the time. We also saw a cardiologist about the murmurs (holes) in Amelia’s heart, but luckily they should close on their own, as one is a fetal heart valve and the other is so close to the wall of the heart that it should close as Amelia grows. We’ll really know if heart surgery is in our future when Amelia’s a year old and has another echo.  In addition, we saw our ENT, Dr. Penn, again as a post-op follow-up. Amelia had healed well, but because of how unusual her case was, Dr. Penn wanted to see us in a month, but to email him with her progress. Just before we were leaving to go to a family reunion, the mass started to come back. We emailed Dr. Penn, monitored it, and then saw him shortly after we got back. We decided to put her on the surgery schedule at the end of August, planning to only stay overnight after the surgery and follow up in a month. The surgery went as well as the first one and we were able to continue with our plan of blessing Amelia over Labor Day weekend.

When we followed up after Amelia’s second surgery, the mass was once again coming back. However, the pathology on the second mass had come back with an answer: there were hemangioma cells (a hemangioma is a growth that is not cancerous, doesn’t usually affect daily functioning, often looks like a red strawberry on the skin, and is most commonly external). There is a team of doctors at Vanderbilt who are using a heart medication to help decrease the size of hemangiomas and we decided that was the next path to pursue with Amelia. She is now on Propranolol, a medicine that helps regulate irregular heart rhythm but has also proved effective in treatment of hemangiomas in infants. She has been on the medicine for 2 months now and the results have been positive. The hemangioma is not gone, but it is shrinking.

After the diagnosis, one of the neonatologists explained to us that HSV has an 80% mortality rate because most parents don’t catch it soon enough and wanted to know how we had known to bring Amelia in to the hospital. Aaron says he just had a feeling to check her, but I strongly believe that it was the Holy Ghost helping us to know how to care for our baby.   He also told us to expect developmental delays because of where the virus was found. We have also been blessed to move to an area where we have easy access to all the specialists Amelia needs, in addition to support from my family. Even with all the trials that have come with Amelia, the joy of having her has greatly outweighed anything negative. She’s slept through the night pretty much from day 1 (made easier for me when I stopped breastfeeding during her first hospital stay). She is happy pretty much all the time, even when she has to have blood drawn or get shots. She makes us laugh with her sounds, silly faces, and giggles on a daily basis. She loves everyone she meets, and everyone loves her. She has had no developmental delays; in fact, she’s done everything earlier than expected (with the exception of crawling, but she’s figuring that out). She also is the best teething baby I’ve met—no fussing until literally two days before the teeth come in and then she’s done. She loves to play and most of all loves her mommy and daddy. Amelia is how I am able to find joy in my trials.