Saying Goodbye

Ruby and Katya together again

Monday, October 24: My mom and I went up to the hospital that morning. I tried to be there by 11:00 am so we could help change the girls’ diapers. We hadn’t been able to do so the last few days because the nurses were very worried about infection on the girls’ skin due to their open sores. They wanted to give their skin a break from the light. The nurses described that the ointment under the light acts like sun tan oil. It can damage their skin. Ruby was able to come off the light first but Katya’s bilirubin level was too high. That is the level that indicates the amount of jaundice in their skin. The nurses had to start giving Katya and Ruby morphine before they would change their dressings and diapers because they knew with the condition of their skin they were in pain. Tonio and I had noticed that the girls had been especially active and fidgety. It seemed like they had more pain. Ruby had bacteria in her blood that they had to treat with a new antibiotic. They needed to treat it to prevent it from spreading to her brain. This particular antibiotic could make it difficult for the valve in her heart to close. They told us that Ruby’s heart valve had reopened. Katya’s valve had also opened more than it had been the day before. This news was very discouraging. If medication doesn’t work to close the valve the only other option is surgery. Our girls are too fragile to withstand surgery. The valve pumps blood into their lungs. Then the heart has to work harder to pump it out which can lead to congestive heart failure.

Ruby getting a little of mommy's milk

The nurse practitioner, Brenda, told us that the doctors would meet again for their weekly meeting to discuss all the babies in the unit. She mentioned that one of the doctors would like to meet with us after the meeting to talk about future steps.

Katya's incubator and all her monitors

Ruby just loves her name tag!

That evening we met with Dr. Stoddard who is one of the directors of the NICU. One of the nurses told us that he is a stake president. It was comforting to know that many of the doctors shared our religious views. He started out asking us what we understood our girls’ condition to be. Tonio and I both explained our understanding of their condition and complications. He told us about what the doctors had discussed. During their meeting they review all the brain scans, heart ultrasounds, and all the details of our girls. Dr. Stoddard told us that all the doctors agreed that they were just prolonging the inevitable and that our girls would most likely not survive. He said that there have been many medical advances in the NICU field and they could probably keep them alive for some time but questioned whether that was that the right thing to do. The doctors came to a consensus that in their medical opinion it would be best to remove support and let the girls die naturally. The doctor showed us the girls’ brain scans. We could see that the blood was going into the brain tissue on at least one side of the brain. We could see bleeding on both sides of their brains. The doctor mentioned that if the girls were a few weeks older and if they only had one or two of these conditions they might have a chance to survive. Our girls had some complication with almost every major organ in their bodies. Their skin was a very real concern because at any moment they could get more infections. Their bone marrow is too immature to fight off these infections.

Tonio and I shed many tears during our hour plus conversation with Dr. Stoddard. Tonio asked him what he would decide if he were in our position. He told us that he did not know. He said that a few years ago his grand daughter was born premature. Even though he had been a NICU doctor for more than twenty years he said it was very different when it was his own flesh and blood. We wondered what we should do. He gave us counsel to talk about it between ourselves and come to a decision and then take that decision to the Lord in prayer.

We had two nurses come into the room with us. One of the nurses, Kris, told us about her son who was born premature. He was in the NICU for seven months. When he got home they faced many challenges. She said that they spent about 5 days a week at Primary Children’s Hospital. On the other days of the week they had occupational and speech therapists coming into their home. He was almost two years old and he struggled to sit up on his own and he could only say a few words. Unfortunately, he caught pneumonia and his health really declined. They had to come to a point where they had to decide to remove life support. She told us how strong they had fought to keep him alive. She had many priesthood blessing that told her to keep going. Ultimately, they did decide to remove support. It has been ten years since her son passed away. She thinks about him every day. After that she became a NICU nurse. It was nice to hear her story and perspective.

We left the hospital with very heavy hearts. We were not looking forward to making that decision. All along we had prayed for Heavenly Father’s will to be done. We were prepared for him to take them if that was according to his plan. We didn’t want to have to make that choice. We soberly went home. We talked about everything that doctors had told us. We cried. We both mentioned that we felt like our sweet girls were suffering. We felt that it was unfair for them to be in so much pain that they needed morphine to be calm. It hurt us tremendously to see them having to go through these trials and challenges. We decided to withdraw the support. We knelt beside our bed and Tonio offered a very sincere prayer asking if our decision was right. As he prayed, I stopped crying, and I felt peace. Tonio also felt peace and he saw an image of our little family running in a field. We knew the Lord had confirmed our decision to let the girls die naturally. Even though we felt peace we continue to cry and hold each other. We decided to talk to the doctors about our decision the next day and that perhaps Wednesday, October 26, would be the day we would withdraw support. Monday night was a long night.

Tonio helping with Katya's diaper change. We are training him already.

On Tuesday we went to the hospital in the morning. We wanted to spend as much time as we could with Katya and Ruby. We were able to help change their diapers. We spoke with Dr. Contreras about our decision. We said we would like to do it on Wednesday around 10:00 am. They said we could be in a private room with the girls and spend as much time with them as we wanted. Tonio asked her if all the doctors agreed that this is the best course of action. She said that it was unanimous that this would be for the best. We spent more time with the girls and then we went and had some lunch. We came home feeling exhausted.

Helping with Katya's weigh in.

In the evening I was able to help weigh the girls. I got to hold them up above the bed for a few seconds. Tonio helped change their diapers and I was able to swab their mouths with my breast milk. Ruby was making a funny face when I swabbed her mouth with water to clean it. When she is irritated she wrinkles her brow. Ruby was a little restless. Her nurse put her hand on her to calm her. She also tucked her legs under a blanket. That really calmed Ruby. She remained there for a few minutes. As we watched her in the incubator her little leg shot up out of the blanket. Tonio and I just laughed. Ruby doesn’t like to be told what to do. She likes to wiggle and she loves moving her legs and feet. We had our mothers, Ben, and Melissa visit the girls again.

Ruby making a funny face. She doesn't like having her mouth washed out.

Calm Katya. She keeps it cool.

On Wednesday, October 26, we went to the hospital. I wore a pink sweater because it is soft and pink. Tonio wore a nice blue shirt. We wanted to look our best for our girls. We arrived shortly after 10 am. We saw Dr. Minton and he was going over the girls’ status. He confirmed that he was in agreement with our decision. He asked us if we wanted to move the girls into a private room. We said that we did. He told us that when they remove support it may only be a few minutes that they remain with us. Two of the nurses, Jennifer and Shelly, gave up their day off to come and be with us. They had both looked after our girls. They knew that the nurses who were on the schedule to be with us didn’t know us. It was very considerate of them to take the time to be with us.

Holding Katya for the first time.

Our two little pearls

The nurses began with Katya. They had her morphine drip, a heart monitor, and a ventilator. They carried her into the private room. Two chairs were set up so we could sit and hold our girls. They hooked her up to a ventilator and I held her. Katya was wrapped in a cute blanket and had her pink and white hat on. The nurses gave me hand warmers to put around her body so she could stay warm. The girls have been in very warm conditions since their birth. They had to keep the humidity very high in their incubators to protect their skin. It was wonderful to hold her. Her little nose was so cute and it was great to snuggle her close. Next, the nurses brought in Ruby. We decided that I would hold them both first because Tonio had brought his violin to play for them. We thought the nurses would leave and we would be alone but they stayed to watch the monitors and make sure the girls were okay.

Katya Sophia

Ruby Alexandria

Tonio began by playing Cannon in D by Pachelbel. It was beautiful. Ruby squirmed a little bit on the really high notes. She looked so cute. Katya was very calm and peaceful. Originally we had decided not to have family in the room with us. We wanted it to be just the four of us. When the nurses stayed then I thought it would be nice to have our family join us for a little while. My mom was already at the hospital so she came in the room. Tonio played the hymns: I am a Child of God, Families Can Be Together Forever, and I Know that my Redeemer Lives. He also played Mary’s Lullaby from the Children’s Song Book. It was lovely. I think the girls loved it.

Katya compared to Tonio's violin

Tonio playing for his girls. Grandma Jensen came to give kisses.

After Tonio finished playing he sat down and we transferred the girls over to his lap. Our friend, Ali, had sent us a book called On the Night You Were Born. It was very sweet and I read it to our girls while Tonio held them. Tonio had to help me read it because I started to cry. I really hadn’t cried much that day because I was in bliss holding my girls. I also felt great peace from the Lord. Tonio was so tender with them and a little nervous because they were so small and fragile. We joked that they must be Italian because they are Fragile (A joke from the movie A Christmas’ Story). After that we each held one of the girls. We told them that they would have to be missionaries in heaven. Tonio said that we serve missions in our family. I said they could play around a little but then they had to get busy. We told them to say hello to all our family on the other side of the veil. I told Ruby to say hello to my great-aunt Ruby. We knew the girls would be well taken care of by our loved ones.

Proud Papa

The hospital has a person that is in charge of bereavement. Her name is Heather Walker and she lost an infant. She was very helpful and understanding. She was also with us throughout the day. She took pictures of us holding the girls. Later she did molds of their hands and feet. She made foot and hand prints for us to keep. She also brought dresses for the girls’ burial.

Tonio in bliss

The hours just passed away and we held them. We would occasionally take turns in holding each girl. It was a little tricky with their ventilators and tubes to do the switches but we were always assisted by the nurses. Tonio’s mother and brother came to see the girls. It was so nice to see them in our arms and not hooked up to ten machines. They could kiss them and touch their faces. Tonio’s brother left and then his wife came to see the girls. We wanted to hold them all day and into the night but we knew it was time.

We waited until 2:30 pm so the girls would officially be ten days old. Our family left the room and the nurses removed the tape that was holding the ventilator. It left a little residue so it looked like the girls had a milk moustache. We were prepared for them to go at any moment. They still had their heart and oxygen monitor so the nurses could tell when they were gone. Tonio and I just enjoyed holding them close. They were breathing on their own and their little hearts were beating strong. We held them for 30 minutes and then an hour passed. The nurses marveled that the girls were still holding on. Occasionally their monitor would beep and the nurse would check to see if they had a heartbeat. As they would come to check the girls would take another breath or they would still hear their heart. Eventually two hours had passed. We were so happy that they were with us. Katya’s monitor went off and Shelly checked her heartbeat. She couldn’t hear it. Then Jennifer checked it and she heard it but it was very faint. They called in Dr. Cheatham to make sure. The doctor could also hear it very faintly. We joked that the girls were competitive and Ruby wasn’t ready to go so Katya was hanging on. We visited with the nurses and we began to tell them about how Tonio and I had met. We were laughing and enjoying our time. Then at 4:58 pm both of their monitors went off at the exact same time. The nurses checked and both girls were gone. Shelly said that in her 26 years of working in the NICU she had never seen twins leave in that way at the exact same time. We were calm knowing that our girls were at peace. The nurses left the room and we got to spend a few more moments with Katya and Ruby alone.

Katya holding daddy's finger

Ruby with her mommy

Ruby and mommy

We both can say that it was one of the best days of our lives. We loved every minute of holding them and talking to them. We loved looking at their beautiful faces. Their skin was so soft. They both have my button nose. Tonio thinks they have his toes and long fingers. It was wonderful to see their different personalities come out even in ten short days of life. Katya was the calm and peaceful one. She usually seemed content and relaxed. Ruby was the feisty one. She would make a face if you were bothering her. She was more active and seemed to get into mischief. They both would stick out their tongues at us from time to time. We feel very blessed to have those precious days and hours with them. We know that we are an eternal family and they will be part of our family forever. We know we will see them again and we will always be their parents. It was hard to say goodbye but we know that they are running and jumping in heaven. We know they will be well taken care of. Now we have a goal to live our lives so we can be worthy to return home to them and Heavenly Father. The Lord has given us great peace and comfort. He has also blessed us with family and friends who have showered us with love. We feel very blessed indeed.