Home At Last
I wrote out some of my memories from the past month tonight. Here are some pictures too. This will be my last blog post. I guess that's about it.
8:02 PM July 3rd, 2006 you were born at St. Luke’s in Bethlehem. 6 lbs and 9 oz, scrawny and lean like your Dad. Came out screaming like a good baby should, and nice and pink. They left you with us, and we each held you for quite awhile. I left to scare up some food, but the best my hunter-gatherer instincts could muster was some Arby’s down the street. Mom and I ate, and then you tried to nurse. We were both tired by this time, and you were baby #2, so we were content to send you to the nursery to catch some sleep. Little goodbye kisses on your ducky little head, we would have held you longer if we knew what lay ahead.
2:30 in the morning they woke us up and told us you had been sent to the neonatal intensive care unit (NICU) because you oxygen levels were dropping and your breathing was laboured. We were perplexed, but relatively assured that you were alright. We got a look at you about a half hour later, just a little oxygen through the nose. Breathing a little heavy, but still healthy and pink. Went back to the room to try to sleep. Later they said you needed to get an echocardiogram to check out your heart, so our stomachs were in knots as we laid in the dark trying to sleep. Stumbling back into the NICU at 5:30, I saw the echocardiogram being done. Negative for any heart defects or abnormalities, maybe this isn’t so bad after all. Talked with the neonatologist who then related that you had pulmonary hypertension, which could be very serious said you needed to be transferred to St. Luke’s in Allentown. Not so good now. An hour later I walked in again and watched them put the breathing tube down your trachea so you could be ventilated for transfer. They put you in a little plastic box. Now you had people all about you, and the tubes and IV’s were accumulating. You still didn’t look too bad, you looked like a good strong baby, nice and pink. We were both scared now though, and I called my dad and told him Augustine wasn’t doing very good. I had held it together pretty good until I talked to him.
We had two hours sleep, and your Mom had only given birth to you 12 hours earlier, but they let us go at 8:30 in the morning because we couldn’t stay there when you were somewhere else. 45 minute drive home to pick up some stuff and see Haven. Mom tried to get some sleep, but didn’t. We were both very tired and so very sad. We’re at home, without you. Haven makes us smile, as he did again and again the whole long month to follow. It was hard leaving Haven behind, but we needed to be near you and we piled into the car for a 50 minute drive to St. Luke’s in Allentown. We parked and Mom leans on me as we make our way to the NICU not knowing what to expect. It was a big NICU, little babies all around, but you were in one of the big rooms with a crowd around you. I knew you were sick, but when I saw you I knew you were really, really, sick. Now you were on nitrous oxide to help dilate the vessels to your lungs, and they were giving you dopamine and dobutamine to make that little heart work to push the blood to your lungs. Even with all that “help”, you looked very different than a few hours before. You were a waxy white pallor, a deathly shade of grey. We touched you, and you were so cold. You were pumped so full of drugs, you didn’t move, not even a little. We were crying now, you sweet beautiful boy.
We talked with God, that His Life would sustain you. I knew what had to be done now, I am your father, I have been called to watch over your soul. I told the nurse we were Catholic, and that we needed a priest, quickly. A good Father arrived about ten minutes later, a rectangular lapel pin identifying him as Fr. Fred Sattler.
He seemed a little awkward, and a little disheveled. He wore black suspenders. He looked like he was Amish, but the Roman collar didn’t lie. He asked for your name. “Augustine”, I replied. “How do you spell it”? he replied. “A-U-G-U-S-T-I-N-E, you know, like the Saint” I replied. Ex opere operato, thank God the Sacraments are not dependent on the holiness of the minister of the mysteries, or the their inability to spell the name of one of the greatest Western Fathers. He pulls out a blue bottle of sterile hospital water, and a little sea shell. In persona Christi he leads us through a shortened form of the Rite of Baptism, intoning “I baptise you in the name of the Father, and of the Son, and of the Holy Spirit. Amen.” as little droplets of water pour out of the shell and trickle behind your left ear. Sin, Death, and Hell have all been conquered here, the Light has pierced the darkness, a great victory has been won. Fr. Sattler then annoits your head with the chismating oil, confirming you thirteen years early. “I give them all the Sacraments I can” he states, God bless his soul. He gives us the seashell, the water, and the Rite of Baptism booklet. He leaves. A nurse walks in. “How do you spell his name again”? she asks, “Father needs to know”. I write it on a piece of paper. We return to your bed. The Communion of Saints is very real to me now. St. Augustine, St. Ambrose, St. John of the Cross, St. Mary Magdelene, St. Padre Pio, Fr. Luigi Guisanni, St. Joseph, and the Blessed Virgin Mary, along with countless family and friends and people we’ve never met, are all praying with us to Jesus for your little life. There at the bedside I gave you to mother Mary, but that’s your uncle John’s fault, and that’s a story for another time since this comment is already destined to be misunderstood.
The neonatologist tells me you need to be transferred to Philadelphia, to be placed on an ECMO (Extracorporeal membrane oxygenation) machine to keep you alive, otherwise you will die. I ask him what your chances are on ECMO, and he thinks about 50/50. He’s already called the transport team, they are on their way up from Philly in an ambulence. They can’t fly you down today, too many storms.
They arrive an hour later, and I wonder how so many people could possibly fit in an ambulance. They transfer you into another little plastic box, we sign a bunch of papers about something, and you leave a little bit later. Mom leans on me again on the way to the car. As we pull out of the parking lot I’m thinking of what I would like your funeral to be like, and what it would be like to bury a baby. I feel even heavier now, but there is a peace, there has been a victory, you are safe from the Evil One.
Children’s Hospital of Philadelphia, our third hospital in twelve hours. We make our way through the maze to the NICU. It is an impressive place. God uses modern medicine to accomplish His will, whether or not he is acknowleged by our self-sufficient, humanistic, and technological wonder-age. I see no conflict here, where he has endowed man with great gifts, in the instances when man is using these gifts to preserve life, especially of the little ones. The consent for the surgery is quickly explained as we arrive. The serious risks are explained, but there are no other options and I sign. We sit in the waiting room, dazed, watching the fireworks on TV on this most surreal of Fourth of July’s. Mom is crying, I’m blinking a lot. Other families in the little room can’t go see their babies because Augustine’s surgery is being performed in the same room next to their cribs. They give us glances of understanding. The Bowman’s tell us how they’ve been here a month. They found out their little daughter had CHARGE syndrome a week after she was born. She likely can’t see, can’t hear, can’t taste, can’t smell, and can’t feel touch on her face. The other couple in the room had their little Evan rushed in a week after he was born as he was going into heart failure. Evidently he had an anerysm of the vein of Gallen in his brain, shunting too much blood to his heart leading to heart failure. The doctors had threaded a catheder into a vein in his leg, all the way to his brain, and occluded several veins. I guess it was successful, and he was doing well. Wow, here was a whole new world we never knew existed, suffering families with sick babies. Those two families were a great comfort, and we saw them often over the next few weeks.
We had no place to stay, so the NICU let us stay in a room right in the unit. We layed down in bed again, and tried to sleep as we awaited the knock on the door signifying that the surgeon wanted to speak to us. An hour later he knocked, and explained that it was difficult to get the cannulas into the arteries and vein in Augustine’s neck, but the surgery was successful. He said you were one of the sickest kids in the hospital right then. We went to go to see you, and saw the three large plastic tubes exiting your neck with blood flowing through them. Ventilator on one side, ECMO machine on the other. The machine was now doing almost all the work, pumping the blood and oxygenating it. You looked so good now, pink again. The machine whirring in the background was a strange comforting sound. The greatest risk at this point was a significant bleed in the brain. You already had a Grade I bleed, probably from delivery, and now with your blood being thinned to run it through the machine, this bleed worsening was a very real possibility. If you began to bleed, we needed to make decisions, decisions we didn’t know how to make, decisions we didn’t want to make. Now we could only wait, and pray, and wait, and pray.
So we prayed. Some extemporaneous prayers, which were spontaneous, and which God doubtlessly honors, but which were only grounded in our seemingly distant selves. So we prayed the Divine Mercy Chaplet many, many times.
“Eternal Father, I offer you the Body and Blood, Soul and Divinity of Your Dearly Beloved Son, Our Lord, Jesus Christ, in atonement for our sins and those of the whole world.”
“For the sake of His sorrowful Passion, have mercy on us and on the whole world.”
“Holy God, Holy Mighty One, Holy Immortal One, have mercy on us and on the whole world.”
Concluding: “Eternal God, in whom mercy is endless and the treasury of compassion inexhaustible, look kindly upon us and increase Your mercy in us, that in difficult moments we might not despair nor become despondent, but with great confidence submit ourselves to Your holy will, which is Love and Mercy itself.”
So we cast ourselves on the one whose name is Mercy, to give us this day our daily bread.
Days pass, and you swell up from the inflammatory process of your body reacting to the machine that is saving your life. You look kind of fat, as if you were a few months old, with little distinguishing features left apparent. We couldn’t move you at all. We stare at the monitors and watch your vital signs-- blood pressure, respiratory rate, heart rate, oxygen saturation. They never change much, but watching them is an impossible addiction for me. We can only whisper to you, touch your head, your hand, and your leg. You’re sedated, but occasionally move when we touch you. Good news, no bleeding in your brain. Every day seems to bring a new hurdle though, from one lung refusing to inflate, to possible seizures, from the flow stopping in one of the cannulas draining blood, to the machine needing to be changed. But finally you look like your improving, it is day 10 and they say it is time for you to be removed from the ECMO machine. Now it is time for you to do it on your own, with only ventilator support. They take you off, and you remain stable. They start weaning you off the ventilator, and you do really well. No more ventilator after three days, only oxygen through the nose. You only needed that for another day, then you breathe room air like the rest of us. We can finally hold you, and we do, gingerly at first. You like to open your dark blue eyes and look around a lot. The swelling is gone and you look like a little peanut, you are our little peanut with a worried furrowed brow.
Now you have feeding issues. You improve slowly, and get transferred out of the NICU to an Integrated Care Unit. It is disconcerting, you don’t have two nurses caring for you around the clock like you did in the NICU. Its just you, alone in a big room. Mom can’t stand to leave you here alone, they’ll just let you cry in this place. So she stays overnight, every night. She also runs back to the Ronald McDonald House to see your older brother who doesn’t quite understand what’s going on. My sister Debbie and I are taking care of him as best we can. Debbie is the best, and I know were not the only one’s who think so.
They tell us you can leave Thursday, August 3rd, exactly one month after you were born. We pack up, and carry you out to the car where you belong. You are really coming home. Back to Ronald McDonald House to check out, pack up a months worth of junk and find ourselves in a massive traffic jam on the way home. It is still very stressful. We hope your gaining weight, today we are begin to weigh you every morning and night. We love you so much, especially your little worried peanut face. We pray you will be a great man of God, that many hardened sinners would be converted to Our Lord because of you. For this we all pray. Amen.