As Luke's cardiology appointment approaches, I can feel my heart beat with more anxiety than usual. Graciously, God gives us pieces of encouragement that fit our needs perfectly. Today I came across a list of names ascribed to God, revealed by Him to His servants. Each name and definition brought to mind pieces of our journey with Luke and I thought I'd get them down in black and white.
1. Jehovah-jireh: The Lord Who Provides (revealed to Abraham, Genesis 22)
After 8 days in the NICU, we got to bring our new baby boy home. Along with him came a baby scale and the instructions to weigh him every couple of days, at the same time of day. Luke was born at 7 lbs. 4 oz., dropped a bit after birth, but quickly jumped back up to 7 lbs. 3 oz at 10 days old. Over the next two weeks, he dipped again, to the high 6 pound mark. We began fortifying his breastmilk to 27 calories to help him gain.
At 4 weeks old, on a Monday morning, I undressed Luke and brought him down to the scale. 6 lbs. 9 oz. As tears fell, I called Roger at school and he quickly drove home. We called our cardiologist and asked if we could be admitted. It wasn't just his weight loss, Luke had continued to struggle with jaundice. Those home-care lights just weren't cuttin' it, as you can see in the picture below.
Dr. S. made a few phone calls and arranged a room for us on the floor at Mary Bridge Children's Hospital. An NG tube was placed and the plan was to get him going on 30-calorie continuous feeds, with 24 hour light therapy for his jaundice.
This was our first experience with anything invasive being done to Luke and Roger and I decided not to be in the room when the NG was inserted. It seemed to take an especially long time and the nurses did report a bit of trouble getting the tube in. We didn't think much of it as we were busy comforting Luke and getting situated to spend the night in the hospital room.
Later that night, we woke to Luke screaming and arching and the nurse trying to get him hooked up to a second sat monitor. Without any warning, Luke's sats had dropped 10 points, from mid-80's to mid-70's. Dr. S. was called and he drove to the hospital to assess the situation. Luke continued to scream and despite some productive coughing, his sat's did not bounce back without blow-by oxygen. Dr. S. decided he wanted Luke to be brought upstairs to the PICU. I will never forget the fear we felt walking Luke up to the ICU. We were so new to this world and my mind was frenzied with the thought of losing Luke. I even remember asking Dr. S. if Luke was going to die. He quickly assured me that he did NOT bring Luke up to the PICU for resuscitation purposes.
Once they got Luke in the PICU bed, he continued to fight and kick and arch like nobody's business. The PICU doc thought she might have seen a slight pupil dilation and ordered an MRI for the next morning. Seizures and blood clots to the brain were given to us as possible causes for Luke's severe reaction and seeming pain.
The minutes ticked by as they got Luke calm and put the nasal cannula on him. "You guys should get some sleep," they told us. There was nothing we could do for our son in that moment. We headed back downstairs to Luke's original room and were given the room for the night, even though Luke was upstairs. Roger and I slept a little, cried, prayed, and slept a little more on a tiny hospital bed, waiting for morning and the MRI results.
So what happened and how did we see the Lord provide during these trying days?
Luke's brain scan came back perfectly normal, showing no signs of clotting or seizure activity.
The Lord Provides.
The doctors' best guess at this point was that Luke aspirated after a tricky NG tube insertion and the distress on his lungs caused his sats to drop.
At this point, no one was ready to send Luke back downstairs, so he stayed put in the PICU with his supplemental oxygen and NG tube. The PICU at Mary Bridge does not have sleep-in beds for parents and Roger and I didn't feel comfortable going home to Puyallup at night. Early in the afternoon on Tuesday morning, a social worker came to offer us another sleeping situation. She told us that Mary Bridge owns several apartment units right across the street from the hospital, free-of-charge for PICU parents and that there was one available if we wanted it.
The Lord Provides.
This apartment was so much more than a roof over our heads for six nights. It was a tangible outpouring of God's provision. After long days in the hospital, we had a quiet, comfortable place to sleep, within 3 minutes of our son. It sounds strange, but it was a refuge.
Luke was moved back to the floor after two days in the PICU and would stay there another five days, until being transported up to Children's for his first heart surgery. Although the Mary Bridge apartments are reserved for parents with children in the PICU, the unit we were staying in remained available for our entire stay.
The Lord Provides.
As I type those three words repeatedly, the truth that the Lord provides — then, now, and beyond — settles into my heart and helps ease my anxiety.