After you died I locked away my grief into different rooms in my heart. Some of the doors I could easily open and I could enter the rooms without fear. Other rooms stayed shut for longer, and only after time was I able to go in. Then there were the rooms that were tucked the deepest into my heart, with the strongest locks. They were the rooms where I put the memories of the day you died, and the memories of singing our song (How He Loves) to you.
With only two letters left to write to you, I have decided it’s finally time to enter into those rooms. I always knew I wanted to write about your last days, even if just for a record of those memories, but I’ve never had the strength to do so. This week I feel God is giving me the strength to unlock the doors of the scariest rooms of my grief, and enter.
So here is an account of your last days and moments on this Earth, my precious daughter.
On July 19th (day 44 of your life) we were told that your heart condition had worsened, and that you only had perhaps a week left to live. One of the three holes in your heart had gotten bigger and there was fluid filling the space around your heart and your lungs. I remember standing there, listening to the doctors, but barely being able to fully understand what they were saying. I think I just stood silently for awhile, as tears fell down my face, until I was able to muster up enough words to ask if we could stay with you around the clock. Even though they had never let another family have 24 access to the PICU before, they said we could. So that Friday we essentially moved into the hospital.
While we were in the hospital the nurses were all very gracious and let us hold you as often and as long as we wanted. This was quite a change from the norm, when we would go days without even being able to hold you for a few minutes. Your dad and I took turns sitting with you throughout the night, while the other got a few hours of sleep in a family sleeping room. When it was my turn to be with you I just held your hand, stroked your face, sang to you, and read to you from your Jesus Bible.
Your precious body was so swollen from all the fluid. It broke my heart to see you so uncomfortable.
On Saturday, July 20th (day 45 of your life) your daddy and I went home in the morning to take showers and change clothes. Your grandma and grandpa had come to the hospital to be with you, so we felt comfortable leaving for an hour. However, as soon as we got home (about 20 minutes after leaving the hospital) we got a call saying that we should get back as soon as possible.
When we got back to the hospital they said your heart was suffering from arrhythmia (irregular heart beats) and your oxygen saturation levels were falling quickly. As soon as we got into the room I sat in a chair and they placed you in my arms. I had wanted our song to be playing when you passed away, so we started playing it and your daddy, grandma, and grandpa all knelt around you and sobbed. We told you how much we loved you and how proud of you we were. I remember my eyes constantly shifting from the monitors to you. I was watching your oxygen levels drop lower and lower, and was just waiting for the moment that you would be gone. I felt a sense of panic as it dipped down and couldn’t stop saying that I loved you, over and over. I was almost hyperventilating as I repeated over and over how much you meant to me. It was not a calm moment, but one filled with fear and desperation.
But then, by the grace of God, your heartbeat started to stabilize and your oxygen levels started to rise. You went from being completely critical to relatively stable in the matter of 5-10 minutes.
When your levels stabilized we were all in a kind of emotional shock. We had just gone through the motions of losing you, yet you were still here. We had said goodbye, and still you remained.
Little did I know that we would have four more of those experiences throughout the next 48 hours.
For the rest of Saturday you remained stable, but we made the decision to discontinue most of your IV medications. Because your body was so swollen, and you were not urinating, we didn’t want to put any more liquid in your body than we needed to. We weren’t sure if your vital signs would crash again, so we had many of your aunties and uncles, and your grandma and grandpa Ly, Skype in to see you and to tell you how much they loved you. Even your precious doctor came to hold you (for the first time!).
Saturday night daddy and I took turns, again, staying up with you all night. I remember that night was harder because you seemed even more uncomfortable. I think it was all the edema that kept you crying. Watching you in pain, I just told you over and over that it was ok for you to let go. I let you know that you would be with Jesus so, so soon and that you didn’t have to fight anymore.
But you still had more fight in you. And we would have you for 29 more hours.
Sunday (your 46th day of life) was an extremely difficult day for us, emotionally, and for you, physically. On Sunday morning we ordered some sedation for you since we knew how uncomfortable your were. The doctors warned us that the sedation could cause your heart to slow down, but at this point we knew that you were not going to live. Our priorities at that point were to make the last hours of your life as painless as possible. By this time your oxygen saturation levels never got above 85%, and would periodically dip down into the 60’s. We knew that your fight was coming to an end.
Throughout the day your heartbeat would drop dramatically and so would your oxygen saturation. We (me, daddy, grandma, and grandpa) would gather around you and tell you goodbye. But each time you would pull your heart rate up on your own and we were able to keep you for a little longer. Saying goodbye to you, over and over, was by far the hardest thing that I have ever had to do in my life. I remember one of the times we thought you were going I was holding you, and your body made a sharp jerking motion. It scared me so much and I was so afraid that you were in pain, and that pain would be your last memory. After a few times of almost losing you it felt like God was playing a cruel joke on us. I didn’t understand why He would make it seem like He was taking you to Heaven, and then would just give you back to this Earth. Later, it would all make sense.
Despite the fact that you had several episodes of your heart failing throughout the day, you were kept very comfortable through sedation. You slept much of the day, always in someone’s arms, and were completely surrounded by love. In the last 48 hours of your life we had soft worship music playing non-stop, had the lights dimmed so you might open your eyes, and had the door to your room closed with your sound machine humming all in an effort to keep you as calm and comfortable as possible.
On Sunday you had many wet diapers, which was good in that your body was free of some of the fluid, but the nurses said it was a sign that your body was shutting down. Your oxygen saturation had been low for many hours, and your body was starting to let go.
Late Sunday night your grandma and grandpa went home to get some rest. Daddy and I knew that this would most likely be our last night with you, so we both decided to stay up all night with you.
We had been sitting in a chair and holding your all day, but that night we both wanted just to be able to lay down next to you. We had the nurse lay you back in your bed and daddy and I took turns snuggling with you.
From about midnight (officially July 22nd, your 47th and last day of life) on your heartbeat and oxygen levels slowly started to decline. This last night things were very different than they had been in the two days prior. There were not sudden drops that sent up into a fearful panic, everything was slowly and steadily slipping away. I know that this was a gift from God.
We knew the end was so near, yet we were given lots of time to process it in a meaningful and healthy way.
After snuggling with you in the bed, I picked you up and held you for a few hours. That was the last time that I would ever hold you that long. I remember while I was holding you your face seemed to change. You looked so incredibly peaceful and beautiful in those last few hours, which was such a contrast to the pain we had seen you in just 24 hours prior. As I gazed at you, my precious daughter, I felt such a sense of pride in your life. I knew that you were such an amazing, strong, fighting little girl, and I was so grateful that I had been given the privilege to carry you for 9 months and to be called your mommy for 47 days.
After I held you it was daddy’s turn to lie next to you. He had always told me that all he ever wanted was the chance to bring you home and to be able to curl up with you on the couch. He didn’t get to take you home, but he did get to curl up with you in your hospital bed. It was then that we made the last video of your life, just two hours before you went to Heaven.
By 4:00 AM your heartbeat had been in the low 20’s for several hours, and your oxygen saturation levels had been holding in the 50-60%. There was no hope for you living, and in many senses you were already gone. We were tired, and more importantly we knew that you were tired of fighting. We knew it was time for you to go.
We told the doctors that we didn’t want you to suffer any longer. So at a little after 4:40 AM on July 22nd, a nurse came into your room and removed your breathing tube. She placed you in my arms and quietly left the room. Even though you were no longer connected to the ventilator, you managed to breathe on your own for several minutes. You were a fighter until your last breath.
I held you and your daddy sat next to you. This time there was no feeling of panic or anxiousness. I know now that’s why God had us say so many goodbye’s to you before. It was so that at our final goodbye we wouldn’t have to tell you too many things—we’d just be able to savor your last seconds. I remember calmly telling you that I loved you and that you would be seeing Jesus very soon. We watched as the numbers on the monitors slowly fell to zero.
Zero. No more heart beats. No more breaths. You were gone.
The doctor had been watching from the window and as soon as he saw you were gone he came in and said “I’m sorry to tell you that at 4:53 AM, Sophia went to Heaven.” The nurses then came in and unhooked you from all of your wires and cables. We told them to take out your intubation tube so we could hold you the ways we had always wanted to.
I called grandma and grandpa and told them that you were gone, and they quickly came back to the hospital.
In the meantime daddy and I took turns holding you against our shoulder, held tight against our chests, they ways we had never been able to do before.
Then your grandma and grandpa came and got to hold you in the ways they had never been able to before.
A nurse came back in after we had held you for around 30 minutes, and said that they would give you a bath. We helped her wash your precious swollen body, and then we dressed you in a beautiful pink dress that I had brought for you to wear after you died. We held you some more and just tried to savor the last moments that we would have to spend with your physical body.
Then, about an hour after you had passed away, I carried you for the last time. I carried you out of the PICU walls, into an elevator, and down to the basement of the hospital where we would leave your forever.
Looking back on your last days and moments I realize just how much I miss you. Opening up this room of grief in my heart has completely broken it again. Oh, how I wish we had had more time together. Oh, how I wish you had not had to die at all. But oh, the grace of God I see in those last days and moments.
I look back at the pictures and want to tell myself (then) that your next year is going to be your hardest yet, but you will survive. You will be ok. You will heal. You will feel safe to love again, and to love deeply.
Sophia, thank you for letting my hold you in my arms when you went to Jesus. I’m so glad that all you felt in those last moments was love and then Love.
I love you, Super girl.