You may remember Charlie from a few photos floating around on my Instagram page. When we first met in the NICU last October, Charlie was just over 2 weeks old. He came into this world weighing right at 1 pound. You read that right. Charlie weighed 1 pound 0.02 ounces to be exact.
Although Charlie's life was short, he fought hard to be with his mom and dad. Here is Charlie's life in a nutshell, as told by his mom.
It all started on May 15, 2016. I wasn’t feeling so great and I knew I was late, so I decided to take a pregnancy test. Well it came back positive, and I decided to take 5 more tests just to make sure (I was very surprised). On June 6th we ventured to the doctor to hear Charlie’s heartbeat for the first time. My regular OB/GYN did some blood work and tested for Down’s syndrome but it came back fine. My numbers came back somewhat high for Spina Bifida, so I was referred to a Maternal Fetal Physician.
On August 2nd, Dr. Shaver confirmed we were having a little boy (quite the surprise for me). Charlie was quite active in the tummy and they found that he did not have Spina Bifida. However, the doctor did talk to us about the possibility of preeclampsia. I didn’t think that kind of thing would happen to me.
On September 16th (my birthday) I had a severe headache and could not function very well. By September 19th, I was being admitted to “Special Care” at Presbyterian Main to be monitored for preeclampsia. I was followed closely and Charlie’s heart rate would drop from time to time, which was a cause for concern. On October 3rd I had an ultrasound. Charlie’s heart rate dropped significantly while they were conducting the ultrasound, and that lead to me being sent to L&D for 24 hour monitoring. At 3:45am, I had to use the bathroom and when I returned, the nurse was unable to get Charlie’s heartbeat, even with the assistance of other nurses and a doctor.
At 5:30am my Maternal Fetal Physician made the decision for Charlie to be delivered by C-section because he would not have made it through the next 24 hours if they waited. It was at 6:33am when my story ends and Charlie’s begins...
Charlie was born weighing 1 pound 0.02 ounces and measured in at 10.25 inches long. The doctors prepared me telling me that since Charlie was born so early, he probably would not make any noises when he was born. I prayed and asked for a sign that he was ok. When Dr. White held him up for me to see, he screamed and cried. I cried at that moment because it was the most beautiful sound I had ever heard. I didn’t realize it would be the first and only time I would ever hear him cry.
Upon Charlie’s arrival, Chris met with Dr. Morales and Kayla (nurse) and they talked to him about Charlie. Kayla told Chris that he had nothing to worry about because she would be taking care of him that day. They wheeled me into the NICU from recovery and I was able to touch Charlie for the first time. I could not get over how little he was and that his eyes were still fused shut.
In the following days, we had a lot of ups and downs. The first big hurdle was on October 9th when Charlie was at 100% oxygen. I remember the neonatologist telling us that we didn’t have a lot of options at that point because his lungs were in such bad shape and he needed so much support. Chris and I just looked at each other and cried because we knew he was very premature. Everyone tells you about the roller coaster ride called the NICU.
It was on October 9th that we decided to have Charlie baptized. We wanted to be prepared if anything should happen. We celebrated each milestone as it came... whether it was weight gain, being able to tolerate feeds, skin to skin contact, or something as silly as my first experience with breastmilk poop.
It was not a surprise that Charlie had stolen Kayla’s heart when she first met him, so it was important to Chris and I to ask Kayla about being Charlie’s first primary nurse. As time went on we had Anna, Carmine, Rachel and Hannah all sign up to be primary nurses for him. We did have a few other nurses that had special relationships with us and Charlie but they already had primaries. These women all left a lasting impression on us. We will always see them as “Charlie’s angels.”
Charlie was a feisty little guy. I couldn’t help but laugh when the nurses would tuck him in and swaddle him and he would somehow break free, whether it was his little legs kicking or it was his arms. Out of nowhere, you would see his arm go up in the air like a defiant victory.
It might sound silly but I enjoyed changing his diapers, taking his temperature, wiping his face and just having those few minutes touching him and talking to him, so that he knew I was there. In the morning when I would arrive, I would sing songs to Charlie and talk to him about the great big world. At night time I would go back and read him a bedtime story. His favorite story was “On the night you were born.” I say this was his favorite because it seemed to be the one story that I read to him when he would open his eyes and look around.
My most treasured memories were either when Charlie would grab my finger and hold it, or when we had our skin to skin time and I could just sit there and snuggle with him.
I received a call from the Pediatric Surgeon on 11/26/16 and he informed me that they needed to do exploratory surgery bc they thought Charlie might have Necrotizing Enterocolitis. I would not give verbal consent. I wanted to see Charlie before they did the surgery and I made it to the hospital in time. I got to hold him with the assistance of a Respiratory Therapist until they got his bed set up. They told us he had a 50/50 shot of making it through the surgery, and I remember thinking and feeling like this was all of my fault becasuse of the preeclampsia. I felt like my body failed Charlie and put him through more pain than I went through.
Charlie made it through the surgery and did great. We stayed overnight at the hospital just to be on the safe side. I woke up at 1:45am because I wanted to be at his bedside for his 2am assessment. I received a text at 1:50am from Charlie’s nurse telling me that we needed to get to his bedside. I woke Chris and we went running. As we turned the corner we were not prepared for what we were about to see.
A nurse was giving Charlie chest compressions. His primary nurse had just given him a dose of epinephrine because his heart rate dropped and it was not coming back up. Once they were able to get him stabilized, Chris and I made phone calls and some of our family members came to the hospital. Charlie’s nurses all showed up. Charlie really knew how to draw a crowd and get the emotions going.
Around 9pm Monday night, we started to realize that things were not going as well as they were earlier in the day. Charlie was on 3 different blood pressure medications to bring it up, but nothing seemed to be helping. He just looked so tired. It was at that time that I looked at Chris and I told him that Charlie is getting tired and that we needed to make a decision. He looked at me and shook his head yes. Dr. Morales was getting ready to approach us and tell us about the terrible blood gas that he just had, but I stopped her and said that we knew he was tired. We wanted them to go ahead and unhook Charlie from everything and place him in my arms, and that is how he would leave this world.
Our families and nurses were there and said their goodbyes. We then asked our families to leave and we only wanted Charlie’s nurses, our Deacon and Dr. Morales there. The nurses dressed Charlie and laid him in my arms and Chris sat next to me. I sang to him and told him that we would never be angry for him not wanting to fight anymore. After about 5 minutes, Dr. Morales came over and listened to his heart and looked at us and said that he was no longer with us as of 1:24am.
Dr. Morales and Kayla were there when Charlie came into this world and they were there when he left and that meant so much to us because we had such a wonderful relationship with them. When they removed the ventilator tube, I felt so heartbroken but when I looked at my sweet boy, he had this beautiful smile on his face. It was like he was happy and at peace and I felt like maybe my dad was there to greet him in Heaven.
You Are Not Alone
I want other moms to know that they are not alone and that this is a unique club that no one ever wants to be in. I never in a million years thought that I would be cremating my 7 week old son. I still to this day struggle with the feeling of my body failing Charlie and causing him more harm and pain on the outside. There are triggers everywhere and somedays I can walk around the mall or a store and be ok and other days I can walk in and walk right back out because of my anxieties and triggers. I have a few friends who have suffered miscarriages which is still the loss of a child but they cannot fully relate to what I struggle with because we had Charlie for 7 weeks and had a different experience.
Chris and I started attending Kindermourn for grief counseling which has been great. I started going to a support group last week called “Empty Arms,” which specializes in miscarriages, stillborns and infant loss. The first meeting was definitely eye opening for me. I didn’t expect to be in a group with 4 other couples and myself (Chris does not want to participate in the group) discussing the loss of our children and talking about the trauma that we suffered.
One thing that I have learned is that men and women definitely grieve differently. That is something to be prepared for. Do not let people tell you that whatever you need to do to help you grieve is wrong. There is no handbook on grieving or how to cope with the loss of a child and everyone grieves in different ways. One other thing I wanted to mention is that it is ok to need medicine to help with depression or anxiety. It does not have to be a permanent thing but it can help especially when you are going through so many emotions and it can be very hard to handle.