Bobby’s Story (a quintuplet)

“Five?” my husband’s jaw dropped in disbelief as we sat on the couch. “How could there be five?”

I had just come from a routine ultrasound at the doctor’s office. They wanted to follow me closely since I was an infertility patient. I had been taking injectable medicine to stimulate the ovaries in order to try to get pregnant. I had been in the hospital with dehydration and ovarian hyperstimulation as a side effect of the medicine. While in the hospital we found out we were pregnant and now four weeks later the doctor said we were pregnant with five.

Shock, uncertainty, and fear dominated the first trimester. We experienced two bleeding episodes but did not loose any of the babies. The second trimester had two preterm labor episodes. The first preterm labor at 20 weeks gestation was stopped with medications and a cerclage. The second preterm labor episode at 25 and a half weeks could not be stopped despite all efforts. The babies were coming and the NICU was standing by.

November 30th, 2001 Jacob, Bethany, Bobby, Kevin, and Alyssa entered this world each under 2 pounds, on a ventilator, and doing “well” for “25 weekers” according to the doctors and nurses. The babies were very similar in size and appearance. All fragile and precious. All loved tremendously. All fighting to survive. This is Bobby’s story, the greatest fighter.

Bobby’s vent settings were the highest. He needed the most support to breathe. The babies were born on a Friday. That weekend the nurses were calling Bobby and Kevin “the wild boys” since they were so restless and could only get comfortable on their tummies to sleep.

We met with the doctor about the babies’ status. He said “there’s no doubt in my mind you will be going home with five babies.” They were all doing well. He said Bobby was the more “typical” 25 weeker. He may be on the vent a bit longer but he’s doing OK.

Twenty-five days after they were born, Bobby was the only one of the five still intubated. His vent settings would go up and down. He had started getting “bursts” of steroids on occasion to help his lungs function better. A side effect from the steroids was restlessness so the nurse would give him a dose of morphine to help settle him down. The morphine would help but Bobby loved to cuddle. We would sit and rock in kangaroo care for hours. This is a most memorable time for me. Sitting, rocking, and listening to the sounds of the NICU and Bobby’s lullaby music. I would study his little face, fingers, and toes. Bobby also loved to be cuddled in his isolette with his stuffed animals. When they were first born the babies weren’t much bigger than a stuffed beanie baby. When Bobby died he was nearly 10 pounds.

On January 21st, 2002 the doctor thought it was time to do a trial extubation. Bobby was breathing on his own for three and one-half hours but he was working way too hard and they had to reintubate. I was so proud of Bobby. He tried so hard to breath on his own. It was one of the toughest days, though. Despite his valiant efforts, the ventilator came back on. It was about this time the doctors started to talk about a “trach.” They knew that now Bobby was not the “typical ” 25 weeker they first thought and will most likely need the vent for a few more months if not year. A trach would allow him to suck a pacifier better and be able to take a bottle. Bobby had his trach surgery on February 8th, 2002. It was a beautiful day. We saw his entire face- no tape holding a tube in his mouth! He seemed so happy with the tube out of his mouth. He didn’t know how to act- “Wow, my mouth is free!” I had been keeping a journal of the events in the hospital. On the 8th of February I wrote: Bobby did super with the surgery. He looks so comfortable now- what a cute face! It’s progress for the road home. Can’t wait for everyone to be home.

I would say we were in an optimistic pattern after Bobby’s trach surgery. His vent settings continued to go up and down but we had to be heading in the right direction. Or so we hoped. Bobby took his first bottle on February 21st. I was so excited to give it to him. He also moved into a regular crib. What a big boy!

It was on February 28th when the doctor talked to us about the possibility of Bobby being a “nonsurvivor.” He said that Bobby’s lungs weren’t doing as well as they’d hoped and if he didn’t “turn around soon” he may not survive. This was a shock to me. I had it in my head that Bobby will be home with his siblings, he will survive. How could this doctor even suggest that Bobby might not survive? How dare he say such a thing!

Things started to get tougher once Bobby’s siblings were discharged home. Home was four hours away and the doctors said Bobby was not ready to be transferred to a hospital closer to home. He needed to improve his vent settings and get on a home vent so the transition wouldn’t be so hard on him. This we understood. We would not jeopardize Bobby for our convenience and we would to our best to have someone with him as often as possible. Mike and I switched off being in Minneapolis and then my Mom would stay sometimes. For a while I was making weekly trips to Minneapolis to spend a day or two with Bobby and then rush home to care for the four babies and Emily. This broke my heart. Needing to be in two places at once in order to care for our children was a great challenge. Fortunately we had family, friends, and volunteers helping with the care our family needed.

Oh the prayers. Many, many prayers we said for our children & family, especially Bobby. Church members, family and friends said prayers for Bobby’s lungs to improve so he could go home with his siblings. I do believe God was listening to those prayers. He only had a different answer, a different plan. One we may not understand now but someday.

Bobby had good days and bad days. The good days were wonderful. One day in March my Mom was rocking Bobby and I called to see how things were going. Mom put the phone up to Bobby’s ear and he started going to town on his pacifier when he heard my voice. It gave me goosebumps to hear how excited he was to hear my voice. What a sweet little boy!

On April 4th I wrote this in my journal: Gave Bobby a bath, clipped fingernails, played and rocked him to sleep. Not suctioning as much out of his trach. Hard to leave him in Minneapolis. Bobby loved to sit in his boppy pillow and bat at his mobile. He also would play on the mat on the floor with his nurses. He was a flirt and had the biggest blue eyes that went right though you.

By mid-April Bobby was having more bad days than good. Was Bobby going down the wrong path? Will he be a “nonsurvivor” as one of the doctors was preparing us for? It was getting to be scary and unsettling to think of everything Bobby had been through and now nothing seemed to be working. April 11th, 2002 Please God, help Bobby. Please let us do what is best for Bobby. I love him so much it hurts. So many times I would wish to be in that bed instead of him for the lab draws, IVs, chest x-rays, everything he had to endure. I did not want Bobby to be in pain. I wanted what was best for him. The nurses told me the doctors would say if there was nothing more they can do. They would tell you if we were doing things “to” Bobby rather that “for” Bobby.

By the end of April and into May, Bobby’s vent settings and oxygen needs continued to be up and down. He was more restless and harder to settle down. He could not get enough air at times. Sometimes he was almost in a panic. I was so scared for him. The doctors did more tests. Bobby’s lungs were not getting better, he had 1/6 of his lung functioning. There was nothing more they could do. By the end of May Bobby was in hospice care and receiving “comfort measures only.”

June 1st: We are all born with a plan, a purpose. Bobby’s purpose is to teach about unconditional love, the power of the human spirit, compassion, and just plain and simply strengthen our faith in God. God will give him comfort, peace, and guide us in our decisions. Bobby taught us a lifetime of lessons in his short life. I am grateful for the profound impact he had on me. He made a difference.

On Sunday the 2nd of June, the whole family came to the NICU in Minneapolis. We took photos and had a special afternoon with our entire family together. It was difficult. We knew that would be the last time our family would be together. We were saying good-bye to Bobby.

Bobby died peacefully the morning of June 6, 2002 rocking in the arms of his parents. His primary nurses, the doctor, chaplain, and others surrounded us. We were all crying. It rained that afternoon and evening. In my journal late that night I wrote: There was a thunderstorm in Minneapolis tonight. The angel’s tears of joy- they have a new addition in heaven.

It has been a year since Bobby died yet seems like only yesterday. There have been some very emotionally tough times. The honesty that an inquisitive four-year-old can deliver will often catch me by surprise. Our four-year-old, Emily, speaks of Bobby frequently- she knows she has two sisters and three brothers and will share this with anyone who asks. Often there is silence when she explains “…and my brother, Bobby, died. He’s in heaven with Jesus.” It makes me happy when she speaks of him so innocently. While putting the babies in their high chairs she asks, “Does Bobby need a bib? Who’s going to feed Bobby?” Since she is only four I say, “Yes, he probably does need a bib and Jesus is feeding him tonight.” She is fine with that answer.

On June 6, 2003, we remembered Bobby with a picnic at the cemetery. We looked at his baby book and photos and let a white balloon go up into the sky. Later we went to a zoo as a family. In the late afternoon a thunderstorm rolled in. It was just like the day was a year before with a late afternoon thunderstorm. Bobby was letting us know he was with us, too. It was a very meaningful day for all of us.

I share Bobby’s story to tell others who are going through or have been through this experience that they are not alone. God will provide comfort and peace if you ask Him for it. I know the heartache, loneliness, and sadness of loosing Bobby but also rejoice that his is now in the arms of Jesus and I will be reunited with him someday.

I think of Bobby every day. When he died, a part of me died, too. I miss him.