Timing and Trust

Timing and trust are my arch nemesis at the moment. I feel a sense of desperation, waiting for things to happen, to change. I am at the point where I am throwing my hands up yelling at the sky to just hurry up already. The notion that every thing happens at the right time, is exasperating to me until a memory of my son, Pants popped up in my head.

A month before his first birthday, Pants had his second heart surgery. His heart surgeon was to place an artificial artery that would supply blood to his lungs, place a valve that was missing when he was born and close the hole in the wall of his lower heart chambers, a common heart surgery that was named the Rastelli Procedure.

The heart surgeon walked into the waiting room and sat across from me. I knew it was too early for him to be done, so I braced myself for what he was about to tell me. He told me he was able to put the valve and artery in, but he discovered that the veins and arteries in his lungs were so underdeveloped and weak that if he closed the hole in his wall chamber, the strong volume of blood it would produce would surely blow out the vessels. He told me he was going to close Pants up and see what happens.

The old, familiar sense of dread and panic washed over me. The thoughts invaded my mind, “This guy is way over his head with Pants. You got to get him away. Don’t let him open him up again.” I didn’t know what to do. I had taken Pants for a second opinion a month earlier and the surgeon was about as useless as the one he had. The other closest children’s hospital was four hours away.

After the surgery, Pants actually got a little better and stronger. He was able to start sitting up and he was even starting to try to crawl. Three and a half months later, he started to decline again. I was frantic and terrified, begging his cardiologist to tell me what I needed to do to save my baby, only to have her tell me that they decided they wanted to go in and place stents in his vessels in his lungs to open them up and handle the blood flow volume.

“Grace, what happens when he outgrows the stents? Stents won’t grow with him! You know this, isn’t there anything else we can do?” I yelled at the cardiologist. After she told me that this was the only option, I begged her not to do it. She told me that she was going to go back to the team and discuss it again, but she told me this was it.

I knew in my soul that this was not the right decision for Pants. I knew if his surgeon opened him up again, he would not survive. I had no idea what to do. I never slept, nor ate. My time was spent researching aimlessly, never finding the answer. Every morning I would plead that I would find it so I could save him. Watching him slowly die was beyond agony. I would stand under the stars at night and beg for a miracle so the misery would stop.

The meeting never happened, instead Pants crashed. I rushed him to the hospital and paced the PICU room floor rocking him as he screamed in terror whispering that it was going to be alright and for him to keep fighting. His blue tint had turned gray and his oxygen levels were hanging in the forties. I looked out the window of the room to see a cardiologist and a surgeon talking and looking at us. I was so angry that they wouldn’t come in the room and do something. Surely they knew he was dying right in front of their eyes. I was so angry at them watching me and my baby dying, I laid Pants down in his bed to go out in the hall and hurt them as badly as they were hurting my son.

“The artery in his lungs has collapsed, along with many other vessels. He barely has any blood flow going into his lungs. He needs an angioplasty immediately to open all the vessels back up. The problem is his surgeon is on vacation, out of state and all of our cardiologists are at a convention. I could do the angioplasty, but if anything happened, we would not have the team we would need to save him.” The cardiologist said after he met me in doorway. “He needs to be transferred to another hospital. This hospital has a full pediatric cardiac team. I have already talked to them and they are waiting for him. A helicopter is on it’s way to transfer him there.”

I didn’t know what to say, so many things was going through my mind. I knew of the hospital they were transferring him to. The hospital had a reputation of being the best. If you want saved, you go there. Never in a million years did I think for a moment that they had a children’s hospital. I only thought they saved adults.

I drove up to the hospital, knowing if I went with him, he would die. I told him before they wheeled him out to keep fighting until he saw me again and I knew he would. The waiting cardiac team was not only able to save him that night, but his new surgeon was able to repair his heart completely six weeks later. The surgeon was able to reconstruct his vessels in his lungs using his own heart muscle. It grows along with him. I learned a lot about my son’s condition and the horrible mistakes his former cardiac team had done.

I always hate that Pants had to go through all of that, but I find something beautiful in the timing of it. Crashing at the perfect time where he wouldn’t be opened up again by a surgeon who’s God-Complex prevented him from ceasing his experiments on my baby.

So yes, every thing happens in it’s perfect time. The times where I can not see the answers, I must trust that it will be revealed on it’s own. Miracles happen when they happen, I just need to thankful when they do. And most importantly, if Pants and I  could endure that moment in our life and thrive, every thing else is pudding.

 

Advertisements

Self-Abuse

My baby spent the first year and half of his life in and out of the hospital with unexplained illnesses that would send us running into the ER only to have him recover on his own within a few days. I was forced to watch my baby suffer immensely. I always asked “Why him?”

From the day he was born, I was determined to make myself suffer as much as he was suffering. I rarely slept. The moments my son would sleep, I would use that time to do things with my other two sons or make phone calls, begging people to help me. In the middle of the night, I would step outside to finally release that pain I would carry around all day. I would stare at the sky until the sobs would come, usually followed by a bout of violent vomiting. How many nights I spent doing my routine, I couldn’t even begin to count.

A couple of months after my son was born, I was instructed to take him to a “clinic” for his cleft palate. I was told to bring enough supplies to spend the whole day there. My baby didn’t have to have a feeding tube in his nose any longer and was drinking from a special bottle designed for babies with cleft palates. We arrived at the clinic to be welcomed to a waiting room full of mothers with babies that had cleft palates or cleft lips. We were told that there were many doctors we would see all day..plastic surgeon, orthodontist, ears, nose throat doctors, etc. They weren’t kidding when they said it would take all day. Each doctor would check my baby out and ramble off what they intended to do to him. Honestly, I couldn’t tell you what they all said that day, it was all a blur. I knew that I would get a written summary of what they said in the mail in a couple of days, so I just focused on getting through the day.

The last meeting we had that day was with the clinic’s social worker. I had heard of social workers many times throughout the last couple of months. To receive the help of a social worker was golden. I was so excited, thinking this social worker would finally give me list of people who could help me and services that my baby that had no muscle tone could benefit from. Enduring this day was going to be worth every minute since I would finally get a social worker.

“I see your son has severe heart defects, congenital scoliosis and hypotonia along with potential of having a genetic disorder plus a diagnosis of Failure
To Thrive?” The social worker asked as she flipped through my son’s chart.

“You are correct, although I disagree with his diagnosis of Failure To Thrive, he fights and thrives every day.” I told the social worker as I waited for her to answer all of my problems.

“This has to be extremely difficult for you to endure. I see you do this all on your own. Alone?” The social worker said as she looked me up and down. I agreed with her, anxiously awaiting for to tell me she knew of nurses and therapists that would help me and my baby. My excitement was a little overwhelming.

“This is a place where you can talk openly and candidly. I am only here to help you.” She said as she paused, waiting for my reaction. I smiled and agreed, still waiting for to tell me what I needed to hear.

“Do you ever have feelings of hurting your baby?” The social worker said as her demeanor changed to a cop with a bright light shining in my eyes. The room started to spin and it took every thing I had not to start screaming. The rug was ripped out from under my feet once again.

“I think my baby suffers enough without having his mother hurt him too.” I finally said, defiantly. Oh there were many times I wanted to inflict pain on someone, but it was always directed at doctors and now it was directed at this social worker. I didn’t wait for her to reply. I felt the tears coming and I vowed a long time ago that no one would ever see them so I jumped up and gathered my baby and ran out of the room.

My self-abuse became worse after that day. I knew I would never receive help. I knew my baby would continue to suffer. After he received an operation to have a feeding tube placed in his stomach, I developed an eating disorder. I stopped eating because how dare I enjoy putting food in my mouth when I am pouring formula into my baby’s stomach. I stopped showering because my baby’s heart was so weak that he couldn’t handle the shock of a bath. I quit combing my hair out of disgust of looking at my brush with all of my hair in it.

I continued this abuse of myself until I found myself in a hospital room with a nurse that I did not know. My son was sent there after I struggled to get him seen by a doctor. I took him to the emergency room the day before telling the doctors that there was something terribly wrong with him, only to be brushed off and sent home because it was only a stomach bug. We arrived home, only to have my son vomit blood all over the front of me. I rushed him back to the hospital where their alarm of the blood all over me convinced them to keep him. I watched the nurse stare at me across from my son’s bed. I knew there was something she wanted to tell me but I didn’t have anything in me to encourage her to talk. She excused herself for a moment, only to return with towels and soaps.

“I don’t want to offend you and I am sorry I have to tell you this. You are covered in dry blood and you don’t look well. We have a family room where you can shower and lay down to get some sleep. Do you have any clean clothes?” The nurse told me as she laid the towels and soaps in my lap. I informed her that I did have a bag in my vehicle. I thanked her for the stuff and opportunity to clean myself up. Instead of sleeping in the comfortable bed in the family room, I chose to sleep in my baby’s room on the window sill.

I knew my self-abuse was not helping anything. It left me in despair and clouded, not able to see any different avenues to pursue. I don’t know how I could have handled it differently but I vowed to try to figure it out. It wasn’t until my son’s heart surgeon performed his third heart surgery that completely repaired my son’s heart that I stopped hurting myself completely.

“Your son is going to live. Now go get a life so he can have one.” My son’s surgeon told me as we stood over my son’s bed. I was naïve thinking the worst was over, that the struggles were all gone, but I promised myself that instead of harming myself, I would recreate myself and my life in order to give my son the life he fought so hard to stay here for.

Countless times, I have been asked what I do for myself. Sadly, there were many times I answered nothing. It got annoying, the mantra of “you need to take care of yourself”. I totally agree with that, but some times you don’t have that luxury. There are times you have to just sit in your pain and despair, but never stay there. Always look for hope and find your strength to create your life for you and your child.

 

 

Pants’ First Week

My third son, Pants was born via emergency C-section on a Good Friday. I knew he had severe heart defects. I knew he was going to be born sick, I just had no idea how ill he would be. He was born five weeks early due to me hemorrhaging. They took him away from me and by the next morning, I was signing myself out against medical advice and I headed up to his hospital bed.

Family stopped by that Easter weekend and I still clearly remember standing on the bridge waving to my two older sons as they waved back from the backseat of the car. As I watched the car vanish down street, I could not help but to place my hands and head on the glass as I sobbed.

Monday morning started a routine for me. I would wake up around four in the morning, alone in my room at the Ronald McDonald house. I would get dressed and walk to the hospital. I had a chair that sat beside my baby’s bed that I would stay until around eleven at night when his nurse would urge me to pop a pain pill and head back to the Ronald McDonald house.

My days would start off with “Rounds”. I would bow my head and stare at my baby’s tiny little hand grip the tip of my finger as the doctors would give me a list of reasons why my son was not going to live.

Thursday came around and I bowed my head and waited for the usual speech from the doctors, but this time, they hit me like a freight train. They told me he was losing blood. They said his organs were shutting down. They urged me to call my family so they could help me with the decision of taking my baby off life support.

I stared at them, afraid to say a word for fear of what thought would come out. I was pissed. I wanted to lash out at them for asking me to give up on my baby who clearly was a fighter, overcoming every thing they told me would finish him off. I swore they made up things to see if they could finally make me break. Call my family? What family? I had been the only one they saw all week and now they wanted me to give them permission to talk me in to giving up? My sons had not been given the chance to visit with their mom and baby brother all week and they wanted them to finally get an opportunity to see their brother, only to tell him goodbye?

I dropped my head and closed my eyes as Pants’ nurse told them to give me some time. I don’t remember any more of that day, but that night as I laid in the bed and waited for the pain pill to kick in, I asked for answers.

I slept hard, the best couple hours of sleep I had all week. I was in such a deep sleep, that I had to have a woman wake me up. Woman you ask? Trust me, it gets weirder. You know those situations when you were young and clearly needed to sleep for a few more hours but your mom still decides to talk to you as you struggle to stay in sleepy land? I tried to shut out the woman’s  words, thinking I was still in a dream.

She told me that if I wanted him to stay that I would have to tell him. She comforted me as she told me that if it was too much, he would understand. He came here for me. There was no right or wrong decision, there was only a sense of extreme, unconditional love. It all became too much for me and I snapped out of it and looked around my room to find the woman who had been talking to me only to find the room empty.

As I wandered to his bedside, I worried that I had finally snapped. It was all so real, but there was no way any of that happened. I couldn’t tell anyone. The only people I talked to were Pants’ nurses and I was certain they send me off for some help.

The doctors surrounded us as they told me that my baby was worse than the day before. They told me they were going to have a meeting to decide what they should do next. They were telling me my baby was dying. The doctors left and the nurse stepped away for a moment to give me some time alone with my baby.

I looked at my baby who was covered in wires and tubes. I know I was bonkers, but I could feel when he would leave his body to escape his burdens. When he would be present, he would slightly open his left eye to give me the chance to see inside his world. His doctor told me that him grasping my finger was just a mere muscle spasm but I swore he would squeeze tightly during the darkest of moments.

I leaned my face close to my baby’s ear and whispered.

“Hey Bud, this is your mom. I am sorry, but I need you to stay with me. Please don’t make me go home without you. I promise you, I will do whatever it takes, just please don’t go.”

The nurse came back in the room and wiped my tears off of my baby’s cheek. The doctor’s meeting concluded that there was no hope and I found myself pleading with my baby’s nurse to tell them to all go to Hell as I stormed out of the hospital. I had no idea how to get out this situation. I had no one to talk to. I was lost.

The next morning, I had no idea what to think or do. I was completely at a loss. The surgeon was humble and almost happy when he started to talk to me. His demeanor was startling to me. He told me that something happened overnight that he couldn’t explain. Not only was my baby’s organs working properly, but he had stopped bleeding and his blood count was at a normal level. They were going to give him a few days to build his strength up, but they were certain that he could handle getting his first heart surgery.

It took me years to share this story with others, mostly out of fear of being called crazy. It took me quite a long time to accept the woman was either an angel or spirit guide blessing me with the answer I needed.

I can’t explain it all to you, for I am not quite sure myself. All I know is this was the first of many magical moments I will share with my sweet soul, Pants.