On February 16, 2016, we welcomed our daughter, Vera Kathryn, at 11:15 a.m. weighing 5 pounds 12 ounces. Vera Kate had a great first day of life and we were wrapped in joy with our first born. The morning of Thursday, February 18, the nursery brought Vera Kate in to eat around 2:30 a.m. but told us that she would need to return to the nursery in about 30 minutes because her oxygen saturation was a little low. In our sleepy fog, we didn’t think much of it. We fed her and sent her back. When Vera Kate came back to the room around 5:30am to eat again, we asked the nurse if they had rechecked her oxygen saturation and she said no, they were waiting on Dr. Robbins to come in for the day. Again – we didn’t think anything of it. When 8:30 a.m. came and we didn’t see Vera Kate, we got concerned and called the nurse. She said that her oxygen saturation was still low so they were going to do an echocardiogram on her just to make sure everything checked out normal.
This was the point when we got concerned. Dr. Robbins came in and spoke to us. He explained that Dr. Braden, the pediatric cardiologist, was consulted to read her echo. study and he would come talk to us after he finished. Dr. Robbins explained that this Pulse Ox screening, that measures oxygen saturation in the blood, is a non-invasive measure that he did not want to overlook. Around 10:30 a.m., Dr. Braden came in to give us the news that our daughter had total anomalous pulmonary venous return (TAPVR). As one would expect, this came as devastating news to us – our two day old daughter has a congenital heart defect. Dr. Braden explained her condition with a drawing and reassured us that her heart could be fixed with surgery. He said he had already called Dr. Salazar at Batson’s Children’s Hospital and they were prepared for our arrival. After Dr. Braden left they finally brought Vera Kate back to our room to prepare her for her ambulance trip to Batson’s Children’s Hospital. Because I was not yet discharged from the hospital, my husband rode with her and I would have to come later. Letting someone take your two day old daughter away from you in an ambulance is probably one of the hardest things I have had to go through. Once I was discharged, I met my husband at the children’s hospital. They admitted Vera Kate to the Cardiac Intensive Care Unit (CICU) to do a full work up of her heart. They explained to us that they would get an echo of her heart as well as a full body work up to make sure there were no other issues present. Then they would present her case at the Cardiac Rounds meeting to determine their course of action. On Friday, February 19, the cardiac team met with us and explained that Vera Kate did have TAPVR which would require open heart surgery. Dr. Salazar explained that her condition was the best case scenario for a successful surgery. He then told us that conditions like this usually go undiagnosed until the child gets very sick 2-3 months down the road and that it was the oxygen saturation test that saved her. The plan was to give her the weekend and he would operate on her Monday morning at 7:00 a.m. We spent the weekend snuggling, feeding and spending every waking moment with Vera Kate as we weren’t sure what the future would hold.
On Monday, February 22, they came and took Vera Kate away for surgery, another hard moment for us. After four hours of surgery, we got the call that everything went well, her heart was fixed and she would be down soon for us to see her but to be aware they left her chest open to allow for the swelling to go down. The sight of your child after a serious surgery, much less open heart surgery, is a sight I can’t even explain with words. I kept telling my husband that “she doesn’t look real, she looks like a doll.” Despite her condition, we stayed with her, talked to her, held her tiny hand and stroked her head all the while assuring her that she would be okay. Her tiny walnut sized heart was fixed.
Tuesday, February 23, the daytime nurse noticed that Vera Kate’s coloring was off meaning that her top half was pinker than the bottom half. Her face and left arm were very swollen but we were told she may have swelling in her face due to the bypass machine she was on during surgery. They successfully closed her chest and started to investigate her discoloration. They determined that Vera Kate had a blood clot in her neck where her central line was placed. Once they removed that line, her swelling went down tremendously but she would be on blood thinners for 3-6 months to ensure the blood clot dissipated.
Thursday, February 25, they removed Vera Kate’s dressing and her scar looked really good. It was healing great. They also moved us to a regular room. The next day, they did a repeat echo and both sides of her heart were the correct size. Prior to surgery, her right side was enlarged due to pumping larger blood volumes. During our stay in the hospital, Vera Kate had some complications with lung functioning, but thankfully they were corrected with adjustments in her treatments.
Monday, February 29, Vera Kate had her stitches removed and they removed her oxygen to let her breath on her own. They turned off her monitor so we could get used to watching her for any changes in her breathing, coloring, etc. We were quite dependent on the monitor so this was a good thing!
Tuesday, March 1, they removed Vera Kate’s chest drainage tube. She still lost a little bit of weight but they upped her formula to a higher calorie intake as she was eating very well. They gave us the good news of getting to go home on Wednesday.
Wednesday, March 2, after her morning weight check Vera Kate gained 0.9 ounces! After two weeks and two days, we were finally going home as a family of three! Once we were finally home, we became her caregivers by giving her shots and medicines. This required us as parents to work as a team, and brought us closer together than we ever thought possible. Vera Kate is the center of our lives and we cannot thank the wonderful caregivers enough for all that they did for our family. We are so thankful that Vera Kate did not have to leave the state to have this surgery and that we were able to stay close by in our own city. It is wonderful to have a medical facility and surgeons in Mississippi to handle these fragile, newborn heart patients.
We are also thankful to the American Heart Association in Mississippi and their valiant efforts over a three year time span to get the Pulse Ox screening to become a requirement for all newborns in our state. It truly is a life-saving test!
--Written by Alison Biggers, Vera Kate's mother