When Cade was pulled out of me, my first thought was “he is SO tiny”. I hadn’t mentally prepped myself for a 3lb baby. They showed him to me- I was trying to look for any indication of the high-risk doctor’s concerns, but I couldn’t see anything obvious. He was 9 weeks early and so obviously he didn’t have much fat on him, but I couldn’t outright tell if he looked OK or not. My head was spinning. Adam followed Cade and the NICU team to the corner of the room so they could work on him, while my doctor continued to work on me. I was staring at Adam’s face the entire time and I could tell he was extremely stressed out. I kept asking for an update from him and he would just turn around and give me an OK sign. I know him well enough to understand that he wasn’t sure what was going on but wanted to keep me calm. As they wheeled baby Cade out of the O.R. they stopped and let me get a good look at him and touch him just for a few seconds before he was whisked away.
I was wheeled back into my room where my parents were waiting. Of course, I didn’t have much of an update for them on Cade’s condition but I kept trying to tell them how tiny he was so they would be more prepared than I was when they saw him. We were in recovery for probably 45 minutes when the NICU doctor came in with Adam. He cut right to the chase. “So there are some concerns we have with Cade…. Our first concern is his jaw is recessed enough that his airways are extremely small. If he needs a breathing support, we don’t have the equipment here small enough for him so I am recommending that we transfer him to Rocky Mountain Children’s Hospital. Next, his skin is extremely tight. I haven’t seen this before but it could be fluid under his skin. Lastly, his umbilical cord isn’t exactly right. Babies should have some skin that comes up and around the cord, where as with Cade, he had no skin around the cord at all, which makes the connection to the cord very delicate.” At this point my mind was reeling. At some point the doctor said something along the lines of they weren’t sure about chance survival because he wasn’t familiar with anything he was seeing. I think I blacked out about here. I don’t really remember much of anything next until they let me get into a wheel chair and go see Cade. I know I was crying – but only because that is what I saw in pictures later.
This is the part of the story that gets really hard to tell. As I was wheeled into his NICU room my mind was literally blank. As I looked down at this tiny baby with tubes, a huge mask on, IVs, etc. he didn’t feel like my baby. They said I could hold him, so I scooped him up and just held him in front of me so I could stare at him. I could tell he was in pain…. I kept looking at his jaw but then would look at his skin and think of how uncomfortable he had to be. His skin was SO tight. I thought immediately how we would worry about jaw surgery at some other time because I wanted the Doctors to at least make his skin comfortable for him. Adam took him then and I literally was dumbfounded. I know a mother’s love is supposed to be instant but I had just been through so much and at this point was overwhelmed and wasn’t able to fully wrap my head around the situation. I knew that if this little baby wouldn’t make it I was scared to let myself fall head over heels for him. Adam was amazing with him. So comfortable with him as if the IVs and cords and mask didn’t bother him at all. I got to hold him one more time before he was transferred. This time I really looked into his eyes. The nurses kept telling me that he knew me and had immediately calmed down when I got there which I could tell and feel more than anything. I kept thinking “I’m sorry, I’m sorry” wanting to be able to convey that to him. The longer they let me hold him I started recovering from the initial shock of seeing him and began to let myself FEEL like a mother. HIS mother. It was hard to be completely honest. When all of your hopes and dreams are sitting there right in front of you, in pain, it is a lot to take in.
Cade was loaded into what looked like a space ship to be transferred to the Children’s Hospital. My dad and Adam went with Cade. My mom stayed with me in recovery. Unfortunately, the doctor on call at the Children’s Hospital wasn’t familiar with any of Cade’s issues either. This was really disheartening but he assured Adam that the entire team would meet in the morning to analyze the situation. Between all of the doctors someone would know something. Thank you Jesus for my parents. (my mom had come in the 9th and my Dad surprised us and showed up while I was in labor. I don’t really know how Adam and I would have handled everything alone…. They were our angels.)
I was about 2-3 hours postpartum, needed to eat and could feel the sleep deprivation setting in. At some point the tears ran out, the nurse brought me a sandwich and then tried to help me pump. When I learned that Cade was going to be in the NICU I had assumed I wouldn’t be able to breastfeed. This is not the case at all. The plan was actually for me to pump until Cade got strong enough to get it from the source. I wanted to start that night, as this was the 1 thing I could control in the situation. Of course nothing really came out, which I had expected but it did make me feel somewhat better overall. I woke up in the middle of the night to do it again and then early in the morning 1 more time. A lactation consultant then came to help me and she was amazing. She showed me a few quick tricks and voila- a little came out. Enough to take to Cade in the NICU- which they would feed him through a tube.
By this point in the morning, all of the nurses and staff knew what was going on and I was discharged by 9am so I could get to my baby. Everyone kept asking how I felt physically and I couldn’t even tell you. As much as my body was hurting, my heart was hurting 10 fold. Cade was on my mind and I couldn’t wait to scoop him up in my arms. When we got to the NICU, his nurse let us get a good look at him and hold him for just a tiny bit while we waited on the doctor.
When the nurses had told me the breastfeeding plan they reiterated over and over how any drop of colostrum or breast milk I got would be liquid gold for Cade. They had also told me how if I can get it to him fresh that was ideal, but refrigerated was OK too. So that’s why I was so excited and proud to hand over what I had pumped that morning – still fresh. This was a huge turning point for me because the nurse took it from me and went and put it in the refrigerator. My heart dropped… I just knew that that wasn’t a good sign.
We finally got to meet with the doctor that morning. Dr. Horst came into the room and told us what the situation was. He was 99% sure that Cade had a condition called Restrictive Dermopathy. He had seen it 1 time before about 11 years prior. The head of genetics also happened to be in town that day for a conference and was able to validate Dr. Horst’s suspicions. Cade’s condition was not survivable. There was nothing that could be done.
I don’t really know how to tell you what happened the rest of the day in clarity. Thinking back on this day there are some moments that really stick out and other moments that are a complete blur. Our request was to make Cade as comfortable as possible for the remainder of his life. Our families at this point had gotten to the hospital or were on their way. We spent the day with Cade to put it simply. Adam and I got to have skin to skin time with him. My sister’s helped change some of his bandages and put Vaseline all over his delicate skin. We all got to hold him & comfort him when he cried. We got him baptized and took some newborn pictures with him by an amazing organization called Now I Lay Me Down To Sleep. By late that night, he was in pain and you could tell it was getting worse. It was time to make a decision on whether to take him off support or try to keep him with us a bit longer. My first real lesson as a parent was that sometimes you make decisions because they are in your child’s best interest. Of course I wanted to hang out with Cade for as long as possible but looking at this tiny, helpless baby (MY baby) in pain was almost too much to bear and Adam and I knew it was time to take him off of support.
The hospital actually had some hotel-like rooms within the NICU for parents, which they had set up for my family. It was connected to Cade’s room. At about 12:30am on March 15th we let the nurses know it was time to take Cade off of support. We would take him to bed with us and just hang out as a family as he drifted off to heaven.
It took about 2 hours for Cade to pass. Adam held him as I watched him – trying to memorize every detail of his face & body. I kept praying that God would take him fast as I didn’t want him to suffer any longer. Adam and I talked. We talked to Cade, to each other and to God. At about 2:30am we knew he was gone so we called in the nurse and handed our baby boy over for good. Hearts broken but so full of love for his precious life that we were blessed with. And I was changed. From that moment on I would never be the same.
Cade James Griffin