Pearl's Story

The first day and a half of Pearl's life, we were not sure if she would survive.  Each time we arrived to the NICU after a quick rest in my post partum room on the floor below, it seemed there was a team of people surrounding Pearl's crib, performing one life-saving task or another.  Most babies in the NICU share one nurse, but for the first 30 hours after she was born, Pearl had two nurses all to herself.  And she kept them busy.  She was maxed out on several different medications, had a chest tube to drain the air from a leak in one of her lungs, was being pumped full of fluid and medicine to help keep her blood pressure up, had major heart issues, etc, etc.  She was a sick little baby, and yet she was a fighter.  The head NICU doctor who has taken care of thousands and thousands of babies, told us that she had such a strong will.  The fact that she was still alive after having so many major issues was a miracle.

By Saturday afternoon, about 36 hours into her life, Pearl finally started to stabilize a little.  The doctors continually reminded us that she was still a sick, sick baby and we certainly felt how precarious the situation was, but it was such a relief to walk into the room and see only one nurse standing by her bedside, instead of a team of people frantically working to solve another problem.  Saturday evening all four of our older kids were able to come into the NICU and meet their baby sister for the first time.  They each responded to her a little differently.  Ellie was full of delight from the moment she first laid eyes on Pearl.  Jane was a bit overwhelmed by how tiny Pearl was and by all the tubes and wires and machines.  Henry just kept giggling and giggling and commenting on how she looked like a baby doll.  And Lucy couldn't get enough of her and kept singing out, "I see my baby sister!"  Pearl's amazing nurse, Wendy, allowed the kids to spend as much time as they wanted by Pearl and talked to them about what they were doing to help her.  

It was a really wonderful time for our family, and for me it was the beginning of my deep connection with Pearl.  Before this, things had been so unstable and I think I was holding back a bit.  Protecting myself from falling too deeply in love with a baby that probably wasn't going to make it.  I know it sounds awful, but I had been through 10 long weeks of trials that had pushed me to the brink, and I think I was subconsciously protecting my heart from becoming too attached to something that was going to be taken away.  However, as I watched my older kids react with such awe and joy at their new baby sister, and as I realized that Pearl was doing better, even just a little bit better, I started to fall deeply in love with my baby girl.  I felt her strong spirit.  I saw her perfect body, behind all the wires and tubes.  I noticed her long, blonde eyelashes and her adorable head of blonde hair.  I stared in awe at her tiny fingernails and toenails.  I even got to put on a glove and hold her precious hand.  

The second I let down my wall, Pearl came rushing in to my heart.  

Sunday was another good day for Pearl.  She had been weaned off several of her medications and had been switched to another ventilator that was helping her lungs and heart to work better.  Kyle and I spent much of the day by her side and were even able to help the nurse and respiratory therapist perform some of their regular assessments on her.  We sang to her, told her about her siblings, and talked to her about how proud we were and how much we loved her.  It was a good day.  An unforgettably great day.

Kyle and I had both been at the hospital together since she had been born early Friday morning, and by Sunday night I was ready to go home to be with my other kids that had basically not had an available mom for ten weeks.  We stayed at the hospital until almost 10:00 p.m., then headed home with the plan to come be with Pearl first thing the next morning.  We left with a feeling of hope that Pearl actually had a chance.  It was such a wonderful feeling to think about the future and plan for the many days, weeks, and months ahead that we would be juggling our home life with our NICU life.  The other kids were beyond thrilled to have us home and we enjoyed a night in our own bed and the first morning together in a long time.

We sent the girls off to school Monday morning, dropped Henry and Lucy off with a neighbor and headed back to see our baby girl.  When we arrived, one of the first people to talk to us was the NICU doctor that had been with Pearl since the morning before- a truly amazing doctor.   He told us right off the bat that he was extremely worried about the brain scan Pearl had that morning.  Things did not look good.  Even with all of the improvements Pearl had made, Kyle and I had both always been worried about the possibility for a significant brain bleed.  Brain bleeds are fairly common in micro preemies and Pearl had already had several brain scans that had shown she had level 1 bleeds on both sides of her brain.  A level 1 bleed is usually not too big of an issue, but we had known that the chance of the bleed increasing in severity was a real possibility.  The doctor told us that it looked like she now had level 4 bleeds, the worst type, on both sides of her brain, but he wanted to have other specialists look at the images before he gave us all the information.

This news was a huge blow.  I cried and cried.  We knew enough information to know that things did not look good for Pearl's future.  Kyle and I spent the next 2 hours by Pearl's side, waiting for the team of specialists to look at her brain scans so the NICU doctor could talk to us about her prognosis.  Although many tears were shed during this time, it was also one of the sweetest times we had with Pearl.  We were both able to stand on each side of her bed and put our hands into her enclosure and hold her tiny, perfect hand in our fingers.  We stood there like that for a long time, talking to her, crying, and just loving our baby.  At one point, Kyle pulled his hand out and sat down to rest for a bit.  Only a minute or two later, Pearl's scrawny little arm reached back out towards him.  She had been totally still during most of her short life, resting comfortably on pain medications to help her body get the deep sleep she needed to heal and grow.  And yet, when we needed her most, she was there for us, reaching out to us and allowing us to feel her incredible spirit.  Of course, Kyle jumped back up to hold her hand.  During this same time, she looked as if she was trying to open her eyes to see us, arching her petite eyebrows and wrinkling her forehead, straining to open her still fused eyelids.  It was the cutest thing to watch.  I hope to never forget that image.

After what seemed like an eternity, the doctor told us he was finally ready to talk to us about Pearl's prognosis.  He gratefully led us away from the busyness of the NICU and took us to his private office.  He spent the next half hour confirming our worst fear.  Pearl had massive level 4 brain bleeds on both sides of her brain.  The biggest he had seen in a long time.  In short, this meant that even if she survived, which was highly unlikely, she had a 99% chance of having severe neurological problems.

As Kyle and I sat there next to each other listening to the doctor, I think we both already knew what Heavenly Father wanted for Pearl.  As the doctor left the office to give us time to talk, we both wept like babies, clinging to one another.  We talked for a while about what a sweet baby Pearl was and how much we loved her and how much we had already learned from her, and in the end we both felt that it was time to let her go.  Time to let her strong spirit be free from her tiny, struggling body.  We knelt on the floor of his office and together offered a prayer.  For the first, and probably last time in our marriage, I was the one who felt strong enough to be the voice for us both.  As I prayed to our loving Father in Heaven, I have never felt closer to God.  I talked to Him like He was right there with us.  We told Him how honored and blessed we felt that He had given us 3 beautiful days with Pearl.  We thanked Him for the amazing team of family, friends, ward members, nurses and doctors that had helped us along her journey.  We told Him how much we had felt His presence and the presence of angels during the hard times of the past 2 1/2 months.  And we told Him that we were ready to let Pearl come back home to Him but that we needed to know with 100% surety that was what He wanted, because we could not let her go under any other circumstances.

I testify that God hears and answers prayers.  I testify that God was in that doctor's office with us that day and that it was only through Him and with the power of our Savior Jesus Christ that we were able to walk back into the NICU and tell the doctor that we were ready to let Pearl go.  It was through His strength that we were able to drive home and get our other four beautiful children to bring them back to hold her for the first time, then say goodbye to their little baby sister.  I testify that my knowledge of God's love for us and my surety that He has a plan for each of us is what allowed me to comfort and testify to our older kids over and over when they asked tearful questions such as, "You mean, we did all this hard work for nothing?"  It was only with divine help that we walked back into the NICU with faith and the assurance that we were doing the right thing, even though we knew it would be the hardest thing we had ever done. 

The next 2 hours of time will forever be some of the most sacred moments I will spend on this earth.  I don't think I could ever describe the feeling in the little room our family was in as we got to finally hold and caress sweet baby Pearl and give her a name and a blessing before she was taken off the ventilator and took her last breath.  My wonderful brother-in-law, who is also our Bishop, was in the room to lend much needed support.  He said that if had to choose one word to describe that time, he would use the word 'POWER.'  There was a power in that room unlike any I have ever experienced before.  Although there were buckets of tears and anguish, there was an undeniable spirit and the love between all present was almost tangible.  In that room, all that mattered was each other.  The Plan was clear and the path has never been straighter.  That little hospital room turned into something sacred.

We had an amazingly kind woman from the organization 'Now I Lay Me Down to Sleep' who came and photographed our last hours with Pearl.  Although these pictures could never portray the feelings that were present, they are precious and priceless.