Against All Odds

The story of Gus's birth is a hard one to tell. It is such an important piece of the his story, and it needs to be told. While the pain of that day will always haunt me, the miracles that followed from his first breath and every day after are a testimony to the power of Jesus.

We pulled into a gas station to fill up before the 37 mile drive to the hospital in North Austin.  It was induction night. I had several bags packed, pillows, my diffuser and lavender oil, and keepsakes for Gus. I started crying as I waited for my husband to fill up the tank. I cried the whole way to the hospital and balled when we parked. It was cold, it was dark, and it was time to have my baby. I didn't want to go. My family helped me drag all my things into the hospital. We had to wait an extra 30 minutes for our room to be cleaned, more time to worry and more time to be frightened.

I got to my room, put on my hospital gown and waited quietly for the nurse. My first nurse was amazing. I will never forget her. She had a cousin who had a T18 baby, and she was very sweet and uplifting. She took excellent care of me and monitored Gus so carefully. She made sure she slowed down the pitocin if Gus was stressed. I adored her. I will always wish she had been there the next day when it was time to push. But she wasn't. Another nurse came on duty at 7 that morning. This is when it all started to go wrong.

By 1 pm it was time to push. This new nurse told me to bear down and push as hard as I could and to take a breath and push again. It didn't take too many pushes until Gus crowned. There was no doctor, but the nurse said she had called him and he was on his way. Instead of waiting for him, she continued to order me to push, bear down, as hard as I could. I told her I felt like he was going to come out.... and he did. Gus's head was hanging for minutes while this nurse frantically yelled at my sister to pull the emergency cord. Nobody knew where it was, there was no label that said "EMERGENCY CORD".  After finally finding this cord and pulling it, "the stork" was called over the loud speaker repeatedly. Nobody told me who the "stork" was or why he was being called. Actually nobody told me anything.

Next thing I know there is a man with glasses and a surgical hat and scrubs on staring at me from below my legs still tucked into the stirrups. He says nothing to me. Gus is taken to the warmer and the NICU team comes rushing in asking what is going on. The Stork, is talking to the nurse saying there is a lot of bleeding, and the cord is too fragile, therefore delivering the placenta is going to be difficult and risky. Again, he says nothing to me, just looks at me with ghoul looking eyes. Nobody reassures me, nobody tells me if Gus is ok. My mom and sister just keep saying Gus is perfect, he is perfect. I see my husband crying. I am in a fog. I don't know what is happening. Chaos ensues.

My OB shows up, says nothing to me, just barks, "Somebody turn on the lights in here". Mumbles something about me having several tears, and starts sewing me up. At no point did anyone ever tell me how Gus was, or say I am so sorry I wasn't here. There was no explanation for how or why things were so out of control. 

I hear the NICU nurse asking what we want to do with Gus. She has the birth plan in her hands, I have met with her previously, I have had several email correspondences about what I wanted for Gus, yet here she is, questioning repeatedly what my wishes are. My sister asks if we can have a pulse ox to monitor him, we are denied a pulse ox. They tell her that they cannot leave one in the room unless a nurse is present the whole time. My sister says take him back to NICU to be monitored, and again they ask if we just want to hold him and keep him with us. They say if he turns blue they can be back in 10 minutes. I cannot understand why this is happening. We met with everyone before Gus was born. Everyone knew the plan. We were told he could be monitored close to me in the room unless he needed extra support. Why are we now being told that wasn't possible, and why is everyone acting like it is ok to just leave us alone with him? The trauma of the whole thing is not something I will likely ever be able to express in words.

I can't really say what happened in between all of this. I know at some point my husbands family was allowed to come in, and Gus was in my arms for a little while. There are pictures of this, though it is so foggy in my mind. Gus and my husband are taken to NICU, where Gus did turn blue and his oxygen saturation plummeted. Daddy was holding him when it happened. What if we had just kept him with us? Would he be here right now? NICU could be there in 10 minutes? Gus would be dead in 10 minutes. Looking back, I recognize that Gus was indeed supposed to be here. He survived what I would call a traumatic and horrible birth into this world. I wish I could say it got better, but it really didn't.

Gus was given a feeding tube through his nose, and placed on oxygen. He was given formula without my knowledge, and did not tolerate it. He was then given IV fluids. By the time I was released to the antepartum wing, it had been several hours. Eventually I was able to be wheeled over the the NICU to see him. He had the deepest eyes, so blue, like pools of water. I could see that Gus had knowledge beyond his age, as if he was a very old soul. By far, he was and is the most beautiful thing I have ever laid eyes on. There is something about him that draws you in. He is mesmerizing.

There are many more medical details I could go into, but this story isn't really about the medical aspect. It is about the human aspect. I was assigned a primary doctor in NICU, who really didn't want to do anything for my son. They went through rotations, we would have a different doctor for a day or two, then the primary would return. I was refused an EEG and told Gus was not having seizures, I was refused an airway scope, but finally got one which I would deem as completely inaccurate. I was refused a sleep study and told Gus had central apnea. I was refused a visit from pulmonology or any other specialty for that matter, and told that I could see all of these people out patient. They did get Gus a cardiologist and that was how I learned Gus did have a VSD and a small PFO. I was told that room air was not an option at home, and that such a machine for home use did not exist. Someday, I will type up a list of what I asked and what I was told, because there were so many ball face lies, it is truly shocking. There was an article titled, "Is Your Doctor Lying To You?"... let me spare you reading that and just say from my own personal experience... YES, it is highly likely you are being sold a bill of goods that is no where near the truth.

It is hard to imagine that the people who swore to do no harm, are actually the ones inflicting harm on innocent babies by denying them the care they deserve. Yet, I promise you, this happens every single day, and if you are not educated on the issue at hand, you are at risk of becoming a victim. Thank God my sister and my mother spent my pregnancy researching. I wasn't able to do so while I was pregnant. All I could do was get Gus here. My family advocated for Gus, and while we were denied so many things he needed, we got enough to keep him alive, and that is what this next paragraph will be about... going home.

Two weeks of NICU and it was time to go home. We had fought for home equipment, and thankfully had blow by oxygen and a pulse ox to monitor Gus with. We had a feeding pump and NG tube for nutrition, and caffeine for his "central apnea".  Home was better than the hospital, but still horrible. The monitor would go off all the time, feeding was so hard because it had to be done every three hours over the course of an hour and then you had to clean the bag. By the time you checked tube placement, changed a pamper, ran the pump and cleaned it, plus jumping up every 5 minutes when the monitor dinged to make sure he didn't need blow by... it was time to do it all again. Nobody slept. It was a nightmare.

New Year's eve, at around 5:30 AM I had to call 911. Gus's oxygen saturations were dropping into the 40's and I was having trouble keeping him up. An ambulance picked us up and we went to McLane Children's where Gus was well taken care of and stabilized, then took a helicopter ride to Dell Children's. He was admitted and they believe he had a respiratory virus. It was truly a blessing to have to come here. This hospital has treated Gus a million times better, and the team that eventually was formed has gotten him the things he needed. It was found that Gus does have seizures, he does not have central apnea, it is obstructive. His airway is the worst obstruction they have ever seen, and it is miraculous that Gus survived at home. That little boy has the kind of fight in him that doesn't quit. Truly, he makes it look easy, though I know it was not easy at all.

While so often I am faced with medical professionals who insist that the worst case scenario is always the outcome, my little mister continues to prove this false. He brings so much joy to his family and his nurses. I take videos of him doing all the things a 2 month old is supposed to do and force doctors to watch them. I am in contact with other families who have living trisomy 18 children and I share their children with medical professionals as well. It is hard to understand how they can not know these children do exist, especially in an age where information is a click away. Yet here I sit daily, shocked at the misinformation and ignorance stated by doctors.

It is a fact that there have been very few studies on trisomy 18 since the 1960's. I find those studies to be ridiculously outdated and not something to put any stock in. The statistics are skewed, mostly because people believe what doctors tell them and assume their child has no chance of survival so they choose comfort care with no interventions, or they abort. How many kids would live and have a great quality of life if we gave them the opportunity? Well we don't know. I can't say for sure the numbers would change, but neither can doctors... why? because there isn't any research. There are many still births and miscarriages with trisomy 18. There are babies so severely effected that they probably are much better off just being in their mothers arms. A mother knows when it is time to let go. Every case of trisomy is different. Children are effected differently. Ultimately, the parents should be the ones making choices for their children, not a doctor. The push of medical "ethics" is actually unethical. If a medical professional is not educated in all possibilities, they should learn. If they know the possibilities and only give the worst case scenario, they should lose their license. A family needs all the information, not just the portion that suits the doctors beliefs. But that is for another post another time.

I was told to include my religious beliefs in my birth plan and if I wished for a Chaplin to be present. I wrote that I did not want a Chaplin, and that we believed Jesus himself would be there. It is clear to me that Jesus is always there. Even in the most heartbreaking situations, He remains. We have to actively reach for him because the chaos and pain in our lives will steal our awareness of Him. Miracles are not just the big things in our lives that cannot be explained. Miracles are in the every day, every moment things... like breathing. Gus was born alive against all odds. Gus went home against all odds. Gus lived with the most severe obstruction this hospital has ever seen, against all odds. Gus went through a large multi surgeon surgery and survived, against all odds. Gus went into recovery with no complications and is healing, against all odds. This child was meant to be here. There is a plan for every life. Gus has a purpose. He deserves his best chance. WE ALL DO.