Note: This story was written by Spare Key mom Amy H. We felt that Amy’s account of her family’s experience was powerful, moving, and inspiring and wanted to share it with other Spare Key friends and families.
Charlie, Grace, and Julia
Written by Amy H., former NICU mommy
It’s strange to think back to that day in December 2005 when we found out that we were pregnant with triplets. To think about the chain of events that led us to becoming the very different people we are today seems almost unreal. Being NICU parents changed everything.
We were shocked to find that there was not one but THREE little people developing inside of me. There were mixed emotions, but we were mostly excited. Our son, Benjamin, had recently had his second birthday. I worried about the attention that would be taken from him, but I vowed to not let that happen.
The pregnancy was physically exhausting, and the planning that had to be set in place for three babies coming into our lives was mentally taxing. We read books about multiples, made lists, bought a van, and a large freezer for the basement. We thought we were as ready as we could be.
What we were NOT ready for was the idea that these babies would struggle for their lives. We were told that the identical babies, (at that time named Baby B and Baby C) had Twin-to-Twin Transfusion Syndrome, meaning their fight would start in the womb. We were NOT ready for their arrival, 13 weeks early, when Charlie came into the world at 2 pounds, four ounces, Grace weighing a mere 15 ounces and Julia was in the middle at 1 pound, two ounces. This is not the way it was supposed to happen, but even if someone had given us a play-by-play of this scenario ahead of time, we could not have been ready. No one can prepare themselves for something like this. And so, this story is not to prepare anyone, or even to tell you what it will be like, but to let you know that you are not alone.
Their lives began with tubes and needles, pain and discomfort, scans and x-rays and test after test. It was chaotic and confusing, but that’s the NICU. I heard the voices of the doctors, nurses and fellows explaining that Grace needed to pee, Charlie had a grade 4 brain bleed, and Julia’s stomach was distended and not getting better. When all this shocking information is coming to you from all sides your body starts to go into protective mode. You may go into shock. You go through the motions, sign the paper of consent for surgery for your one-pound child and move through the days. People wonder how you make it through, and you just think, “Well, I breathed in and out, because it’s what I automatically do, and that is what got me through.” Looking back, I know it was more than that, but at the time you just allow yourself to be pulled from bedside to bedside.
And then there came a Sunday that snapped me out of my shock for a little while. My husband and I had just dropped Benjamin off at my parent’s house so we could spend the evening with the babies. I always looked forward to getting to the nursery, especially on the weekends, when the time spent there was less. For reasons unknown to me then, as we got on the freeway that day I began to cry. I didn’t want to go and I didn’t know why. I was shaky and anxious before we even got there and I didn’t want to walk into that busy nursery. Once we got there it only took a few moments to realize why I was feeling that way — Grace was so very sick. She had more than an extra pound of fluid on her 15-ounce body and her skin was stretched to its limit. She was on full assist and she had not peed. It was no longer about what the doctors were doing for her, but rather what they were doing to her. We were told we had to make a decision. No parent should ever have to make this kind of decision for their child. We felt like her life was in our hands. But if you could’ve seen her, well, it was obvious what had to be done. But still, we had to say the words. We decided it would happen the next morning so we could have our family and our priest there. Grace would be baptized and be given her last rites on the same day.
That next morning was surreal. And as crazy as it sounds, it was one of the best days of my life. It was beautiful. It was peaceful. It was LIFE. Extreme emotions surrounded by love and support. We were being HELD, and not by each other. God’s presence was so big in that tiny room… How else can you make it through something like that?
The talk the fellow on duty had with us before it all started was insane. She said that when they take out the tube, there may be some gurgling sounds, some gasping for air. She said Grace might turn blue. She wanted us to be “prepared” for that. Ha! She told us that Grace was on a lot of morphine to make sure she wasn’t uncomfortable. This made me really sad. I wanted her to know we were there. I wanted her to know what it felt like to be touched by her own mommy and daddy (something we hadn’t been able to do because of her underdeveloped skin). I wanted her to hear our voices. I was afraid that the drugs would not allow that but now I think that maybe she had been sitting comfortably in God’s lap, watching it all happen. And maybe her arms were around us as well.
We sat off to the side of the nursery, away from Julia and Charlie, in this little room. My parents were there, as were my brother, my sister-in-law, our priest and the NICU Chaplin who had become a dear friend. My husband Jedd and I each held Grace for the first time, as did each member of our family. We kissed her and stroked her cheeks. I questioned what God would think of us giving Him back this beautiful little girl he had just given us three weeks earlier. God answered my question through the people there that day. He said, “This decision has already been made for you — you are now just letting her go to the place she is supposed to be.” He said, “Maybe you are not human beings having a spiritual experience, but rather spiritual beings have a human experience.” He said, “You are a good mother. You are a good mother. You are a good mother.”
After she was gone, life went on. Can you believe that? Grace was still warm in my arms, and as Jedd looked out the window he saw people heading out to lunch, going for a walk, laughing… people were just going on with their lives while our hearts were breaking and our daughter was making her transition to an angel. Unbelievable!
We were moved to another nursery the next day, as the staff thought it might be upsetting to see Grace’s empty spot in the nursery. Her funeral was on the same day that I got to hold Julia for the first time. We went to the funeral with good news about Charlie and Julia, telling everyone they were doing so well. We hadn’t a clue. You see, we had told the doctors early on that we didn’t want to hear the statistics and the worse case scenarios. We wanted to hear about what was happening with our children at that time, and not what they think could or might happen. This way it was easier for us to hold on to HOPE. Hope is what also carried us through this journey. If you don’t have hope, you have nothing. And so we took great delight in the little things — open eyes, a wet diaper, a new hat, a change in ventilator settings — these may seem like little things to a person who has not been in the NICU, but to us they were reason to rejoice and smile and let down our shoulders a little. We knew there were peaks and valleys in this place, but when you know how deep those valleys can be, you stay up at the top for as long as you can.
That first day I got to hold Julia was the day that they were showing the last of the neonatal team the consecutive scans of Julia’s brain. The scans were getting worse and worse, and the neonatal doctors had agreed unanimously that the scans foretold the story of a life confined to a wheelchair, without words, without noise, and quite possibly full of darkness. The news was devastating, of course. The fellow who had to tell us cried right along with us. His eyes filled with tears and his voice shook as he tried to make predictions from this little black box, this thing that no doctor truly and completely understands…the brain. Before this meeting I had been feeling good about both Charlie and Julia. Charlie was ready to switch from a ventilator to a CPAP and Julia seemed to be bringing herself back up again whenever her oxygen saturation levels would drop. When all of this news was thrown at us, I felt myself going down a drain. I felt the spiraling and the dizziness and suffocation coming at me, and I didn’t have a clue how to stop it all. I leaned against Chaplin Chuck and thought maybe some of his “Chaplin-ness” would rub off and I would feel God lifting me from the haze. But that didn’t happen. I held on to Jedd’s hand, like I had so many times before, and squeezed.
As we let this all settle in and tried to think about what life would be like with a child who would have lots of special needs, life went on again. I couldn’t get over that part. People who have not been in the NICU have no idea what it is like. They can imagine, and do their best to make you feel better. They say things to you with good intentions, but sometimes leave you speechless with their inconsiderate words. You have to remember that they don’t know. They don’t know what it’s like and they say the typical things that people say during hardship or loss. They are doing their best without knowing what it is they would want to hear if the roles were reversed. Sometimes silence is golden. A hug can say so much more than any word could get across. How could they know this?
Having Benjamin in our lives was a Godsend! Many people think it would be hard to have a little one at home, but he actually was our break from reality! We kept him in daycare so he had that constant in his life, and our days were free for being at the NICU. Benjamin always made us laugh and smile and helped us put our minds on other things, like what his favorite song was, how many bananas he could eat at one time, or how long he could ride his Big Wheel. He kept us sane.
Charlie was sort of put on the back burner during most of his stay. His brain bleed required surgery to place a shunt, and we were told the outcome could be anything from a completely “normal” child to severe cerebral palsy. We would have to wait and see. His weekly eye tests were normal and his PDA fixed itself with meds. He finally got on a nasal cannula (we got to see him without tape squeezing his cheeks together!) and then an open-air crib. Thank goodness he was moving along without too much fuss. He was a trooper and a fighter, just waiting for us until there was time. Our little bear!
In the meantime, Julia was slowly taking a turn for the worse. She was not absorbing her calories, even with the two sets of steroids that she was given. She was unable to wean down on her vent settings and she eventually required surgery for her perforated intestines. She also had a shunt placed, just like her brother, although she had a harder time with the surgery and got an infection and a collapsed lung. The doctors told us there are two things a baby needs to get off of a vent — a strong heart and lungs, and a brain that remembers what to do. She only had one of those things. It was just one thing after the other with her. She hadn’t had a break since conception.
And so, eventually we had to make another decision. I couldn’t believe it. To do it once was unimaginable, but TWICE?! I couldn’t wrap my head around it. When Julia would look at me with her big, dark eyes I couldn’t see the pain and the sickness and the doubt. I only saw her soul. My daughter’s beautiful soul was there in those eyes. We had made a connection. Because of this, it was harder to come to terms with having to make this decision. Who were we to decide what to do? Wasn’t this the doctor’s job? Wasn’t this God’s job?! We were swayed to let Julia make the decision. Not just by the doctor’s, but by our hearts, in so many (private) ways. She would decide.
It was a Monday morning and we held her for a while before they took out her tube. We took pictures, which was awkward, but necessary. That was one of the regrets I have from the NICU… we didn’t take enough pictures and videos. With three sick babies, pictures and videos were not at the forefront of my mind, and I only wish someone would have thought to just be present and do it more often. But I have the memories, clear as day, in my heart.
That Monday was a pretty good day, once she was off the vent she actually held her own — in fact, she seemed to be doing even better! My mind and my heart were a huge bundle of emotions. I didn’t know if I should pray that God would just take her so she wouldn’t have to live a life like the one that was predicted for her, or if I should pray that she would be strong enough to stay with us so we could show our little girl what it’s like to be loved and held. Maybe all of the doctors were wrong. I was being selfish either way.
When Jedd and I walked in to the nursery on Tuesday evening, I knew. I knew we would be there until Julia was gone. Her breathing was labored and there was a sort of rattle. She had spit up her food, which she had never done before. I just knew. And so I held her. I touched her and whispered to her how much I loved her. Through my continuous tears, I told her it was okay to let go — that her sister would be waiting for her and she didn’t have to be afraid. And as I held her in my lap with Jedd by our side, she laid with her eyes closed. Her head was in my hands and she was quickly slipping away. Her heart rate was down in the twenties and I knew it was almost over and so I asked her to open her eyes. “Just one last time, baby. I need to see those eyes one more time.” And she did!! She opened her eyes with peace and comfort, and they seemed to say that she was going to be okay. And then she closed them and she was gone. It was 12:02 a.m. I knew it was happening, but when Julia was gone I just couldn’t believe it. I couldn’t believe that we had lost another daughter. I couldn’t believe that He would give us three beautiful babies and then take away two of them so quickly. Why would He do that? What was He trying to teach us? Were all of our prayers, that we so fiercely repeated over each isolette, not good enough for Him? What did we do so wrong? I was mad. The thing I held onto with all my strength had disappeared… my faith was gone. My faith was crushed and my spirit broken. I was done with Him.
Each time I went into the nursery I would put my hands over Charlie, trying to protect him from something horrible happening. It scared me to have a doctor walk into the nursery, as I feared he would want to “talk” to us about Charlie. Fortunately, there were no care conferences for Charlie. He pushed his way through, learning to drink a bottle and breath at the same time. He made if home three days before his due date.
Leaving the NICU was bittersweet. I didn’t want to leave the only place my girls ever knew. I didn’t want to leave the comfort of our new family, as after three months and such extreme emotions, the staff there had become our extended family. They knew, first-hand, what we were going through. They saw what had happened and had walked by our side with tears in their eyes from our losses, or cheers of joy for our Charlie bear! Five years later we are still in contact with them and many of the NICU staff came to Charlie’s fifth birthday celebration. They will always have a part of our hearts.
Nothing I can say can prepare you or make you understand what life is like in the NICU. Our story is one of great loss, but there was also a wonderful, great success, as after several surgeries and lots of therapy, Charlie is just like all of his peers. You most likely could not pick him out as the preemie. He is sweet and patient, loving and empathetic… like no other child I have ever known. Sometimes I think that his personality is God’s way of saying “I’m sorry.” Charlie is my hero.
We have come out stronger on the other side of our NICU experience. God has never been more present in our lives and I have come to understand that God did not set us on this journey as a punishment, but rather as a chapter to lead into the next. We have met many wonderful, kind people and made lots of new, supportive friends that we would not have met otherwise. Our faith has depths that I didn’t know were possible. We count each day as a blessing and Charlie has taught us to slow way down. Life is busy, but we feel like we know what is important. We know that it doesn’t matter if the kitchen floor needs to be swept or that we need to go through the mail… it’s a beautiful day, and what we need to do is go for a bike ride, be together and remember that life is about spending time with those we love.