Loy Lim came into our world and our lives on October 4th, 2019 at 3:05 am. The nurse had pulled my husband to the side and told him that she needed to talk to him about something. “The baby is not breathing well, so we need to figure out why and possibly transfer him to a bigger hospital” My name is Jinhee; my husband’s name is Paul and this is the story of how our first born son was never held at the moment of birth and how he never came home.
My pregnancy with Loy was overall a rather healthy process and all screenings went well, nothing of abnormality. We were both very excited to meet our new baby boy. But everything was changed when he was born. I got admitted into the hospital early on October 1st, due to lack of amniotic fluid and continued to wait and wait, day after day until we received next doctor’s orders. On the night of Loy’s birth, the doctor said he needed to come out at this moment due to the continued lack of amniotic fluid in the womb. I went into the operating room to have a Cesarean delivery.
Our precious, sweet baby boy came out at around 6lb 4 oz. Hearing his cries was the most amazing experience I’ve ever felt. My husband went over to take a look at our son and have a quick chat with the nurses. Loy was having trouble breathing at birth and nurses diagnosed him with a right pneumothorax, where one of his lungs was not working probably and collapsing. Loy was scheduled immediately to be transferred to NICU at a bigger hospital so they could take a closer look at his lungs. I went back to my hospital room to begin my recovery and the medical team had brought Loy into the room with an incubator. I only got a small glimpse of what he looked like and had to see what he looked like through the photos Paul took on his phone.
While I was continuing my recovery at the hospital, Paul was commuting back and forth between both hospitals to check on the status of Loy and my health.
At the Medial Center The doctors ordered an echocardiogram for Loy’s heart and found out that he actually had a heart defect, a congenital heart disease called Total Anomalous Pulmonary Venous Return (TAPVR). Total anomalous pulmonary venous return is a rare congenital malformation in which all four pulmonary veins do not connect normally to the left atrium. Instead the four pulmonary veins drain abnormally to the right atrium (right upper chamber) by way of an abnormal (anomalous) connection. This is what was causing breathing problems for Loy.
The surgery needed to happen in order for him to live and the procedure was simply TAPVR repair. The goal of the surgical repair is to restore normal blood flow through the heart. Doctors usually connect the pulmonary veins to the left atrium, close off any abnormal connections between blood vessels, and close the atrial septal defect. After I got discharged from the hospital, I immediately went to go see Loy for the first time. At that time, I wanted to see and touch him so badly. Finally, I could see him two days after he was born! When I called him, he opened his eyes and lifted his head up! That was an amazing moment! I felt like he recognized me!
Loy’s surgery was scheduled for the first thing next morning and said our goodbyes before Loy went into the operating room. After 7 hours of waiting and waiting, our doctor came out and told us, Loy has a normal working heart now and will be in discomfort and pain for the next few days. Loy was adjusting to his new heart and getting blood flow and circulation back to normal. They will need to continue to monitor his condition for the next 3-4 weeks to see signs of a healthy recovery. Loy continued his recovery in the PICU. The first steps in his recovery process was to make sure his breathing was okay. He was still breathing with the assistance from a ventilator. Doctors and nurses also found out that Loy’s diaphragm was stuck up on the right side and needed to bring the diaphragm down to normal position.
Loy was still having a hard time breathing on his own because his diaphragm is stuck higher up. He had what was called a left hemidiaphragm paresis. It is the loss of control of one or both sides of the diaphragm. Doctors will perform diaphragm plication. This usually happens after the cardiac surgery he received. So they scheduled another minor surgery to help bring his diaphragm down to make more breathing room for his lungs. After the surgery, hopefully he will be able to breathe on his own! Fast forward a couple more days, and Loy’s breathing started to see some positive signs. He was finally off the ventilator and we were able to hold him in our arms for the very first time! This was also the first time we heard his cries since birth.
After a couple weeks in the intensive care unit, Loy’s recovery was steadily increasing. He was then transferred to a pediatrics hospital to start his rehab process. During the rehab, Loy would learn how to eat, suck, track his eyes, and play! We had a great time there together. I read books and sang songs for him. We saw him smiling a lot during his time there. He played with lots of toys and bright neon lights. We were so happy every day and looking forward to him coming home. During those happy moments, his doctor told us with caution, that they found fluid build-up in his lung. Loy also had an appointment scheduled at the bigger hospital to check the status of his heart condition. His cardiac doctor at the university told us his scar tissue from the surgery site is not healing as expected so they will need to reexamine the heart and open up the veins through a cardiac catheterization procedure. Loy needed to transfer back to the hospital in order to receive his catheter procedure. Doctors said it wouldn’t be a big issue once he had received his catheter.
During Loy’s time back at the bigger hospital, I realized that he was breathing faster than before, sleeping too much, threw up a lot even though he ate a tiny bit through his NG tube, and sometimes had dry coughs. I talked to the doctors and nurses about all of these issues when Loy returned. At first, the PICU said since he was stable, he can stay on the pediatrics general floor instead of the intensive unit. His cath procedure was scheduled for next week but not any earlier because he was not to be in an “emergency” status. We were very uncomfortable and uneasy since we could tell Loy was not acting normal. I kept asking them when he would have the cath and if he could stay at PICU for better treatments. One of the nurses said he is stable and doing well so they pushed this cath back further until next week because this week was also the week of thanksgiving holiday, so they pushed the cath procedure again the next week. He was sleeping too much.
Even when I was changing his diaper, he was still sleeping. I told the doctor that he looked very uncomfortable and sweaty, but the doctor kept telling me he was alright. One day, his back was very sweaty, nothing like we have seen before. We tried to cool him down by blowing on his back and changing his sheets every couple hour. He had no energy to look at us. We talked to nurses about these issues but they have done nothing different. The next morning, Loy went into cardiac arrest and his heart stopped. Doctors and nurses came in to perform CPR but that wasn’t working so they hooked Loy up to an ECMO, Extracorporeal membrane oxygenation, also known as extracorporeal life support. After the ECMO was attached, he was admitted to PICU.
The next two days were the hardest and most emotional days of our lives. There was nothing we could do and nothing the doctors and nurses could help with. It was just a waiting game for Loy to come back on his own and to get his heart and lungs working again. He was a genuine warrior but he couldn’t overcome 60 minutes of cardiac arrest. The doctors told us his condition was not looking good and was doing worse as each hour passed on by. We were not ready for this to happen so suddenly. We had decided it was enough for Loy and accepted that he was not going to return. On December 2nd, he went to heaven.
This is the letter Paul wrote to Loy in his memorial service:
Our Sweet, Beautiful, Baby Boy. Our Baby Angel, Loy Lim has gone to be with our Father in Heaven last night 12/2 7:36pm. Thank you for being my first-born son. Thank you for loving us. We love you so much. I hope you know that God loves you so much. You have given us nothing but joy, happiness, peace, and love. 2019 was filled with joy, but the greatest joy was you. Thanks for smiling so much and being with us in our short time together. We are blessed to have been your parents and we shall meet again. You have fought so hard, now Rest in Peace, my son❤