3 days old
When I talk about Cash, born at 25 weeks 5 days, weighing 1 lb 13 oz, via emergency c-section, I tend to leave the hard side of it out. People don’t want to hear about the sad things. They just want to read a success story and move on with their days. If it isn’t a success or what they imagine to be the best possible outcome, they say a quick prayer or thought and still move on with their day The trouble with that is, we don’t always get to move on. Sure the stories of micro-preemies born at 25 weeks, defying all the odds are not so rare anymore. It happens. Escaping the NICU unscathed with such an early gestational age is awe inspiring. It makes my heart soar. In no way, shape, or form, am I downplaying their miracle. Unfortunately and fortunately, (it’s such a contradiction, I know ) there’s those of us out there that don’t end that way. Some come home empty handed. Some come home with babies that will have disabilities for the rest of their lives. I wish that it was talked about more. I wish people would ask and really want to know the story. Not some beautiful synopsis of what they think it should be. My hope is to show some perspective on what is a very difficult, and rarely talked about side of things. In the process of sharing a glimpse of our journey, I want others in similar shoes to not feel so alone. I know I did and in fact in some moments still do...
8 days old
The NICU can be heaven and hell, sometimes within 5 minutes , or even 30 seconds. It can bring you joy that is unimaginable one moment and excruciating fear and sadness in the next. Some days you can hold it together, others you run out, holding back tears until you can lock yourself in the bathroom, fall to your knees and cry. It will undoubtedly be one of the most trying experiences of your life. It will change you in so many ways. Your outlook on life, your marriage, relationships, faith, and priorities. I should know, we spent 96 days total, emergency air lifted, between two different NICU’s, a level III and level IV.
Minutes old, shortly before needing intubated
Cash was taken so early, because I was suffering from a life threatening pregnancy illness called HELLP Syndrome. HELLP stands for: H- hemolysis (breakdown of red blood cells), EL- eleveated liver enzymes (liver function), LP- low platelets counts (platelets help the blood clot.) HELLP is often attributed to be in connection with preeclampsia or eclampsia. However, as I know all too well, that is not the case. It is also thought to be seen at term or near the end, sometimes even after delivery. Once again, not always true. From my experience some docs think elevated blood pressure and protein in the urine (the tell tale sign of pre-e) is the end all/be all, along with the rise in liver enzymes, and drop of red blood cells and platelets. Also, is not necessary to be indicative of HELLP syndrome. Along with the symptoms sometimes being similar to pregnancy symptoms, the flu or even other illnesses, it is often misdiagnosed. Today, in 2017, women still die from this, but this is not the story I am telling today. Had it not been for an observant and educated ER doc requesting I be admitted. Two days later, if my high risk ob doc, at the hospital I was transferred to had not requested a secondary run of blood work upon arrival, both my son and myself would not be here. My already extremely elevated liver enzymes had doubled within the two hours of the previous bloodwork. 15 minutes after that I was being prepped for an emergency c-section at 25 weeks 5 days. I knew he wasn’t ready, I knew he would struggle, but I had no idea of the journey that lie ahead for us all.
I don’t talk about the really hard stuff. The gnitty gritty, punch in the gut stuff.
I don't talk about how much it hurt when my baby was pulled from my body, 15 weeks too soon. The blow that hit me, when I couldn't even place my own eyes on him, as he was ushered away. My only image for several hours, was one my husband snapped as they were pulling him out of my body. The way my heart broke when his tiny cry wasn't louder than a soft mewl of a newborn kitten. Rushed away to be placed on machines to help him breathe, keep him warm, keep him alive.
I don't talk about the first night he crashed. The fact that I asked the nurses if he was okay, just hours before. His eyes looked bloody, to which they responded, that's left over bruising from the fight to get him out. The way his doctor looked at us when he came to my room to tell us our baby was dying. The look on his face when he turned to walk out the door, the tears welling up in his eyes. That look still haunts me to this day. How I started to scream when I realized what he actually was saying. The fact that moments before I had been reading a NICU binder provided to us, that had said 25 weekers had a 50% survival rate played over in my mind as I was wheeled away from my room. The hallways seemed to go on forever to get to the NICU. Once inside, the chaos before my eyes. Not only was Cash in distress but another baby was too. The beeping, ringing, and dinging was constant. We were asked to sign a form, giving consent to take extreme measures. When we were offered to bring a Chaplin up to have him baptized. How angry I was when the Chaplin would not leave us alone, after she baptized him. I remember wanting to shout at her to GO AWAY. The feeling of my screams and cries as the left my throat and rattled all the way down to my 24 hour fresh incision. Squeezing the pillow to try and help with the physical and emotional pain. The look on my husbands face and how I saw him cry for the first time in four years. Our parents arrived and their faces were unforgettable. They mirrored our emotions. The realization that he had gotten the last blood transfusion he could get for the night and then the last platelet transfusion. Knowing that at this point we were just waiting for him to leave the earth. Looking at my husband and asking him if it’s time to just let him go, the look when I asked, followed by a not yet. The way his little body seized beyond anyone's control. I pleaded with God and then the devil and then God again. I gave up and decided to let him go. I was okay with that thought but I knew I would never come back from it. I changed my mind again. I asked to leave the NICU. I couldn’t bare to be in there for another minute, only to have my dad tell me that I needed to stay, I needed to be there for this. The feeling of absolute helplessness. The doctor telling us he won't make it through the night. Watching his O2 and heart rate dip lower and lower and bounce back up again, only to drop once more. Willing myself to put my hand inside his isolette and talk to him, rest my giant hands against his skeletal frame. Tell him of my hopes and dreams for him and how much I loved him, his daddy loved him. His grandma's and grandpa's loved him. Letting him know that I want him to keep fighting, but if he is too tired it is okay to let go, go home. After more hours than I can count, having to go to sleep. Arriving back in my room to a full on panic/pain attack. Drifting to sleep, expecting news of his death when I awoke.
I don't talk about how for days after he survived, I had trouble getting myself to get close to him. I was afraid to become attached and have him exit our lives before I was ready. I don't talk about the how grim the outcomes were that we were originally given. How he would never walk, talk, feed himself, recognize me, limited cognitive ability, etc. I wasn’t made aware until about a year later that several very close friends and family members were approached in those early days. Approached by staff and asked to talk to my husband and I. Really try and let us know how difficult things could be. That he may just a shell of a person, and how constant care would be more than feasible. My husband knowing me, said no, not yet. If we let him go, I will loose her, and I can’t loose her too.
Daddy’s first Kangaroo care
I don't talk about that for a month after his birth his lungs hemmoraghed and his PDA, in his heart, pumped blood into his lungs. Every time they would suction his ET tube, I would watch streaks of red, pink and brown shoot up the line into his container. How days are spent hoping, wishing, that the bleeding will just stop. When given a medication to help assist his PDA close, caused his heart rate to shoot to up to 300 beats per minute. The first time it happened, I was away, and only told of the occurrence. The second time, I was right there. My stomach dropped to my knees as I watched his heart rate grow higher and higher until I could no longer take it. I turned around and locked myself in a private bathroom to fall to my knees and cry. I spent a lot of moments crying in a bathroom. Most of the time I couldn’t bare to cry that hard in front of others. It was easier to keep that pain to myself and let it out alone.
I don't talk about how scary it was to send our newborn to neurosurgery when he wasn't even supposed to be in the world for another two and a half months. I don't talk about when not one but both his lungs collapsed. That my grandparents were there, and in order to keep them calm, I hid my fear. Hid my emotion and stayed strong to keep them calm. I knew if they unraveled, I would as well. I don't talk about how fearful I was, that he was going to leave us for good.
2 days post-op
I don't talk about how well he did afterwards, only to come down with meningitis. Haemophilus, a bacteria that grows on our skin had entered his incision. I don't talk about when his respiratory drive stopped and I was all alone, with the exception of the nurses and doc present. The way the voice left my throat, “HE’S NOT BREATHING!”. How we ran from one part of the NICU to another, one where babies could be intubated. The feeling that soaked into my soul as I was asked to step away and wait , as they placed him on a machine yet again, to keep him alive. The way the world slowed down as I walked out and sat in the waiting room, trying to process what was happening again. Realizing I was without my husband at that moment when I needed him more than anything. The night he started seizing and when he would seize in my arms because of the infection surrounding his brain. How utterly out of control you feel.
I don't talk about watching other families' babies succumb to their prematurity. Watching their tiny lights flicker out. How you cry with them and beg God for them. The sadness that falls over the NICU as we're asked to exit, so they can spend time with their little ones and say good bye. The loss is something you never forget. My heart still aches of all the little angels, we were near, when they left this world. The guilt I feel for still having my son, yet they don’t have their child/children.
I don't talk about sending our baby miles and three hours ahead of us via emergency helicopter on Thanksgiving. To a new place, with new nurses and docs, away from all of our support. His respiratory drive had once again began to suffer and the fear was the meningitis was getting out of control. While we're stuck trying to pack and prepare for what will be another step in our already long journey. Speaking to a nurse and neurosurgeon on the drive down, being told he will have yet another neurosurgery, followed by at least one more, to be decided at a later date. That once we were discharged, we were back within 7 days and spent the majority of our son’s first year in a hopsital.
Waiting on Riley’s Lifeline flight team to arrive via Helicopter. First of four, emergency air lifts in a year. Thanksgiving 2015
I don't talk about when Cash's seizures wouldn't stop the first time. His nueorologist or NPP popping in with an update in meds or reporting yet more seizures. Brainstorming ideas and game plans. The phone call after phone call I would get that night informing us that he was seizing still. Reaching the final step of placing him in a medicated coma, to give his brain a rest. Essentially a control, alt, delete as his neurologist called it. Later finding out the term was status, and can be very dangerous. When it happened again, 7 days after we were discharged from the NICU.
First time in a medically induced coma to calm brain down and stop seizures.
I don't talk about how difficult it is to pass your baby over to a nurse in pre-op. It never gets easier. We’re at 13 times, 9 of which have been neurosurgeries now and I still ache every time. How anxious the waiting room feels. The way he screams when we go to post-op to calm him down.
I don't talk about how difficult it is to realize how far behind developmentally Cash is. How jealous I am of other babies. How scared I am for his future and what he will do when we’re gone. How he will be treated, as a child and adult.
I don't talk about Cash's severe brain damage. Shortly before we left Memorial's NICU (the first one we were in), we were shown Cash's CT of his brain. That the right side was literally all black, except for a tiny bit at the top and the bottom. The left side had much more brain tissue but there was still a massive black spot. The next two days I spent crying because I had not realized how truly bad it was or honestly I had let myself think it wasn't that bad.
I don't talk about the fear of shunt malfunction, infection, aspiration, or seizures. How anxiety creeps into my brain daily, worrying about serious things, because serious things can really happen with his history. I can't work because I have to watch for ALL of these things, care for him. I can't trust someone to be able to do everything that I do on a daily basis, watch for everything that needs to be kept track of. No one knows him the way I do and my intuition has proven right time and time again.
I don't talk about how hard it was to say good bye to a baby I had come to know and love. Her parents were one of the few people who truly understood our struggles. How hard it is to not be able to talk to them anymore because I feel guilty. Guilty that my son is still here. How unfair life can be. Why one baby lives and another dies. The weight I carry that I couldn't attend her funeral because Cash had been airlifted to Riley. His shunt had malfunctioned again. The sadness that haunts my soul because what makes us so lucky, that our son came home and their girls’ did not. That her picture still sits on my fridge and I pray for her parents every day.
I don't talk about how I suffer from PTSD and depression. How hard the flash backs are. That sometimes have to pull over the car and try to calm myself down. The feeling of dread that follows any thought of going to Memorial or Riley. I don’t think I could ever actually walk into a NICU. I couldn't look at any pictures of Cash in the NICU without having a panic attack, followed by anger. The nightmares and how I'd lie awake at night replaying things over in my mind, scared to fall asleep. How angry and then sad and angry I was, over and over again. A smell, a sound, a thought, a story all could send me to a place that was so hard to get out of. The loneliness and isolation only made everything that much worse. That I saw a therapist and got treatment because I needed it not because I wasn't strong enough.
I don't talk about the sadness of not having any more children. By the time we could even think of having another baby, I will have at least three different things that would make me high risk. My husband and Cash need me more than we need another child. The care Cash needs alone, it would not be fair to bring another into the world. How I at one point, in the very beginning, questioned if we did the right thing by fighting to keep him alive. How guilty I feel now for thinking that.
I don't talk about any of these things but I am starting to. And I think that's the first step to recovering from our trauma. I will never forget what we've gone through but I hope, as I begin to open up, I heal.
Today Cash is two years old, as of Sept 18. He is such a joy to be around, despite everything he has been through. He has the biggest personality and is always smiling. His current big diagnosis are quad spastic cerebral palsy, acquired hydrocephalus, seizures, g-tube dependent, chronic lung disease, cortical visual impairment, GERD, and motility issues. He is in six different therapies and a weekly swim class. He is army crawling everywhere and we recently acquired a gait trainer to help him learn to walk. Although, he may still need a wheelchair, we are pretty optimistic he will still be able to walk short distances. He gives me hope, strength, resilience. He has taught me more about love and the ability to fight for everything you have. He is the blessing, we never knew we needed.
Defying the odds and surpassing doc’s expectations since 2015. #CourageforCash