Absence Makes the Heart Grow Fonder

By-Trey Darnell

It has been many weeks since I have been able to blog about our journey as two dads. In November, I had surgery on my right wrist and found myself in a cast for a couple months. After too long of an absence, it is time to resume sharing our story with The Next Family. We left off with our return home from Texas with one-week old Harper.

16 Screws

16 Screws

It only took two weeks in Harper’s life until everything took a sharp turn toward the unknown. It started as a normal Friday that included a pediatrician appointment. Harper was jaundice, and we had been treating it with a bilirubin blanket at home for several days. On this Friday, we were hoping to get the good news to stop using the bilirubin blanket, but the day didn’t proceed as planned.

Bilirubin Blanket

Bilirubin Blanket

Over the period of a week, Harper had been undergoing daily blood tests. Over a three-day period, her hemoglobin level had dropped to a critically low level. We were instructed to proceed to the hospital for a blood transfusion. Before the hospital intake was finished, Harper was transported to the children’s hospital a half-hour away.

After arriving at the children’s hospital, Harper was taken to a private room where many doctors and residents surrounded her. We were asked question after question. Inquiries were made about the medical history of the birth family. One of the positive aspects of an open adoption is the availability of the health history of the birth parents and birth grandparents. In one of my obsessive moments, I had scanned all of this medical information and had it readily available on our smartphones.

Harper's Ambulance Ride

Harper’s Ambulance Ride

Before our second intake of the day was complete, it was determined that Harper would be transferred to the Pediatric Intensive Care Unit (PICU). We were a total emotional wreck. We were scared, confused and speechless. My parents had met us at the first hospital and travelled with us to the children’s hospital. Harper was taken out of the room to receive an IV, and Matthew and I had reached the point where we needed some alone time. My parents gave us a hug and reluctantly left the hospital.

Within a few moments, Harper was returned to the room. She had an IV inserted into her head. Band-Aids were stuck to both arms where attempts at starting an IV had failed. As the staff left the room, Matthew and I fell apart. Even to this day, seeing pictures of Harper like that is very emotional.  It was the toughest thing I have ever experienced.

Harper with IV

Harper with IV

Before we had a chance to process what we were experiencing, Matthew’s parents arrived at the hospital. Matthew’s half-sister began to tear up as she saw Harper with all of the tubing and chords monitoring her vitals. We politely asked Matthew’s parents to leave the hospital and allow us to support each other and Harper. It was an emotional moment for everyone involved.

There was one positive outcome of this intimidating experience, solidifying our new family unit. It was one of the first times in our lives that we had to turn to each other for support and not rely on our parents for comfort in this moment of uncertainty. It was now our time to claim our position as the parent and be strong for our daughter. Over the next four days, we continued to stand strong for our new family.

The first night in the PICU, Harper was under two enormous blue lights for the jaundice. Her red blood cells were breaking down at an alarming rate, and the cause was unknown. Harper was not producing enough red blood cells to replenish the red blood cells that were being rapidly destroyed. She would need a blood transfusion while the physicians worked to determine the cause. Until all the tests were completed, Harper was not allowed to eat.

PICU Room

PICU Room

One of the most difficult things in life has to be caring for a sick infant. She was so hungry and crying for food. There was no possible way to explain to her what was happening. She was connected to several different monitors. The bilirubin lights required her to be blindfolded. She was connected to a pump that was administering the blood transfusion. We were unable to pick her up and hold her. The only method of comfort came in the form of a small dosage of a glucose solution called Sweet-Ease. The Sweet-Ease provided a couple of drops of sugar and purified water to calm her when she cried.  It provided only a few minutes of peace for Harper.

Harper and her nurse

Harper and her nurse

Harper underwent a heel stick every couple of hours over a four-day period to monitor her hemoglobin levels. In the end, she only needed one transfusion. Harper is currently six-months old and is under the care of a St. Jude’s hematologist. We still do not have an explanation for the rapid destruction of her red blood cells. This past week, St. Jude withdrew a fair amount of blood to send to the Mayo Clinic for genetics testing.  It is my understanding that part of the testing will simulate a sickness to see how Harper’s blood will react when she is battling a common illness.  It is actually fascinating stuff.  We are still waiting for the results.  Several months of blood test have indicated that  her body is now producing enough red blood cells to maintain what is considered a normal level.  We are very hopeful that the current test results will be negative and point to an anomaly. In this case, no news is good news.  Harper provides every indication that she is a happy and healthy little girl.

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Trey Darnell

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