Today, Benjamin Anthony is two days shy of being eight weeks old. If he was still in the womb, I'd be 35 weeks pregnant... But now, he's just about to come home from his long, long stay in the Neonatal Intensive Care Unit! I'll do my best to give you a glimpse of what our life has been like since his birth. This whole experience is unlike any I've ever had before... and my cup overflows.
Benjamin weighed just 2 pounds, 9 ounces when he was born and all of his systems were still immature. Luckily, I'd known since 22 weeks gestation that I was at risk of premature labor and was given steroids to help speed his development should he arrive ahead of schedule. Sure enough, he came at just 27 weeks and 3 days.
I had no idea what to expect. I was first able to see him a couple of hours after delivery. All I could see was his little body. All ten fingers and toes, and his tiny chest moving up and down with each breath. I felt like I couldn't really see his face because his eyes were covered with a mask to protect him from the phototherapy used to lower his biliruben levels (toxins in the blood that cause jaundice). He had so many wires and tubes covering his little body. He was hooked up to a ventilator for the first 24 hours to help him breathe; he had two lines inserted into the veins of the umbilical cord--one to feed him nutrients and another to continuously measure his blood pressure; he had an IV in his foot used for drawing blood; and monitors covering him to keep track of his breaths, heart rate, temperature and oxygen levels. It was extremely intimidating...
The first week was intense. We had to get used to constantly hearing the alarms and beeping noises of the NICU. It was hard not to be overly concerned each time his equipment notified the nurses of something. It was very unfamiliar. The day after he was born, the doctors happily reported that he had been breathing over the ventilator the entire 24 hours he'd been alive, so they confidently took him off of it and put him on Vapotherm--a heated mixture of humidity and oxygen to keep him comfortable and help him breathe. Then, a few days after birth, they discovered that he had a Patent Ductus Arteriosus or PDA. Simply put, an artery in his heart that should have closed shortly after birth hadn't. Treatment options included administering medication (indomethacin) or doing surgery. Surgery meant a long trip to Hawaii because there are no neonatal surgeons in Okinawa. We anxiously prayed and prayed that God would spare us from such risky travel and allow the medication to work. And he did! The PDA disappeared with two doses and God answered our prayer. I was able to hold him at four days old. Kangaroo Care they call it... holding him skin-to-skin. My heart almost melted right out of my chest.
The next several weeks were full of surprises. Benjamin only progressed, and with the exception of occassionally being put back under phototherapy, he never took a step back. He began metabolizing breastmilk through a tube in his tummy; he continued to gain weight; he required less and less oxygen and eventually moved off the Vapotherm and onto just the nasal cannula (room-temperature oxygen); he even began maintaining his own temperature. He no longer needed medicine, so they took the IV out. Each day seemed like more good news and it was hard to remember the words they told us, "Take each day one at a time... two steps forward, one step back."
Then, Thanksgiving Day, I noticed that Benjamin was acting rather cranky. He was irritable and having more episodes of bradycardia (extremely low heart rate levels). Preemies often experience bradycardia as a result of their immaturity, but he seemed to be having more than normal and even some apnea. The doctors also noticed that he wasn't acting like the same little boy, and did some tests only to discover that he had a urinary tract infection. It was so sad to see that IV go back in his little body. But a week of antibiotics seemed to do the trick and he was back to his normal self.
Soon after his UTI was resolved, he came off the oxygen completely; so that means that he's been able to breathe room air for weeks now! We were even able to start bottle feeding and finally the last tube came out. Now, he is wire-free and tubeless. :)
And, Grandma Marilyn came all the way to Okinawa to visit him!
With God's help, Benjamin has jumped over every hurdle in his way. Mark and I want to say thank you to all of you who have gotten on your knees for our sweet boy and lifted him up to the Lord; and for all your love and support and encouragement during this rough time. We are simply in love with him and in awe of God for even making little Benjamin a blink in our eye.
The doctor's hope to have him home sometime next week! Thanks again, and we'll keep you posted!
Mark & Laura
