Rylee Rose Part 3: Peaceful Passing

My journal entry early Saturday morning, November 29, 2014:

"I've only seen her once so far. I am very anxious to physically progress from my c-section as quickly as possible so that I can go see her again and help her be healthy in every way that I can. My biggest focus is to pump a lot so I can get the breast milk that she needs. Nick is going to try to donate blood for her today, if they are a match. We love her so much and are praying so hard for her. There are tons of people praying for her which we are very grateful for. We are striving to keep our faith strong in God's will, but we are praying that God's will allows us to keep her here with us to enjoy her spirit in our family on earth for as long as possible. We are really anxious to get to know our sweet daughter and take the best loving care of her that we can. Her future is in God's hands and I know I must trust in Him because He knows best and has a greater plan than our mortal eyes can see."

I did progress quickly. I was very motivated! I was able to get the machines off my legs and get up out of bed first thing in the morning so I could ride in a wheel chair to the NICU. I got to touch Rylee for the first time that morning. 

It didn't feel right to want to touch her though when she looked so fragile. Her delicate body was bruised in some places and was so tiny. So, I hardly wanted to touch her because I was afraid of hurting her. It was a very odd moment because I wanted so badly to hold her and touch her but reality restrained my hand. I briefly caressed her arm and leg, but I couldn't touch her for very long. I just wanted her safe and sound with her cocoon closed back up.

Nick's hand next to Rylee to show the scale of how small she was.

The hope and excitement that I had carried with me was slowly cut down throughout the events that unfolded Saturday. We finally had a sit-down meeting with the NICU doctors who reviewed the results of the extensive tests that were done on Rylee and they revealed the reality of her condition. Things weren't looking as good as we had hoped. It was very difficult to transition to acknowledging that Rylee might not make it, especially since I am such a big believer in miracles. Was I supposed to hold on to hope or was I supposed to brace myself for tragedy by not getting my hopes up?  

I remember the moment when Nick and I decided that we needed to just stay optimistic in order to stay strong. Whether Rylee made it or not, what good would it have been for us to give up hope and start grieving before she had even gone. If she did survive, we would have wasted time being depressed for no reason. And if she didn't survive, we still would have been wasting our precious time being depressed rather than being happy with her in the short time we had left with her.

To give up hope would have rendered us debilitated. We wouldn't have been able to make important decisions with such clarity if we had let our minds be clouded by doubt and depression. I'm very grateful we made the choice to face the unknown with hope and faith in God's will. That made all the difference in the remainder of this difficult day. Nothing changed in our circumstances except our attitude and our choice to be strong, in fact our circumstances got worse throughout the day, but because of that choice, we were able to bear the unbearable. This choice was possible because of all the great examples in our lives of people we had seen be strong. We wanted to be strong like they were through their hard times. Witnessing others overcome their trials is a powerful force that can give you hope that in spite of your human weaknesses, you have the ability to be strong too.

Saturday felt like a lifetime. And I suppose it was in a way, for our daughter. We acknowledged the reality of her premature condition but we also hoped for a miracle if it was God's will. Nothing was anatomically wrong with her. There was nothing visually wrong with the pregnancy to cause my body to evict her early. The only thing that was holding her back was that her lungs were too premature and nothing was really working to get them to open up. Multiple rounds of surfactant had been given but were ineffective. If the doctors had had any type of warning and could have pumped steroids into me while stalling labor, that could have helped her chances significantly. But that wasn't in our luck. There was no time to do anything like that. Sometimes babies her age could pull through but it's hard to predict within the first few days after birth. At one point, we thought her lungs had opened up. My doctor came and told me he had heard that she was doing better and that her lungs had opened up.

The texts between Nick & I of our short-lived excitement when we were told Rylee's lungs opened up.

I thought a miracle had happened. But unfortunately, as we later learned, my doctor was mistaken.

One of my dear friends came Saturday afternoon to meet Rylee. Nick and I took her with us to the NICU around 5-5:30pm. When we got there, there were a lot of nurses hustling around Rylee. We had to wait a moment before going over to her. Once we got to go see her, we noticed she was moving a lot which we thought was a good sign. When we mentioned it to the head nurse, she told us that the movements were actually seizures and that things weren't looking good. She needed Nick and I to discuss with the head doctor over the phone what was going on because it wasn't looking like Rylee would live much longer. There's not much you can do in a moment like this except for keep putting one foot in front of the other. After a long conference call in a private room with the head doctor and nurse, we were notified that they had done absolutely everything that they possibly could for Rylee but she was not doing better and was getting worse. She probably wouldn't make it. We had to make a choice about what to do next. I can't remember the medical terminology. My mind can only remember single words or phrases like:

"lungs not opening"

"respiratory failure"

"lack of oxygen to the brain"

"seizures"

"hemorrhaging"

"life support"

We decided to keep her hooked up to everything but we would go ahead and hold her and say our goodbyes. We also made sure they gave her whatever she needed to not feel any pain.

We had my parents come to the hospital with Eli. We met in the NICU at 6 pm when it was temporarily closed to visitors so that we could have some privacy. My husband, our bishop from church, and my dad administered a blessing to Rylee, taking one more chance to place her life in God's hands, which gave me great peace to let God know that we wanted His will to be done. It was so relieving to let go and let God take control.

A team of several people worked together to transfer Rylee and her life support equipment from her incubator to my chest. 

I was seated in a chair and they taped all the tubes to my hospital gown, with Rylee on my chest, skin-to-skin.

This was my first and last time holding my baby girl. I was the only one who got to hold her while she was alive. We touched her, kissed her, sang to her, and said our goodbyes. We held her little hands and rubbed her tiny back. We calmly waited and watched as her heart-rate slowly dropped.

Rylee holding Eli's finger.

Rylee holding her daddy's finger.

Rylee holding her daddy's finger.

Rylee Rose passed away peacefully in my arms at approximately 7pm, Saturday, November 29th, 2014. Her short life spanned about 30 hours. I can't really write much more about it. There aren't really words or time for it all right now. It was painful but beautiful, sorrowful but sweet. I need to always remember that I truly felt at peace when she passed away. I was heartbroken to say the least, but I was relieved for her to not have to suffer anymore. 

After she passed away, the nurses disconnected her from most of her tubes so that Nick could have a chance to hold her. 

Our sweet little sleeping beauty

Our last moments with her, after she had passed away, before we had to leave her. 

Official cause of death: 

Respiratory failure/ Respiratory distress syndrome, due to extreme prematurity.

Conclusion:

Would it have been easier to not have ever been pregnant to begin with? Yes, I suppose; however, I would have missed out on an enriching depth in my life that I now enjoy only because I had her.

Would it have been better to not have gotten my hopes up after she was successfully delivered and after her doctor said her lungs opened up? No. What good would doubt have done for me? It's always better to choose to have hope, rather than hope's unproductive opposite, pessimism. I'm so glad that I spent my short amount of time with her, grasping for hope, rather than being distracted from the present by despair. 

Would it have been easier if I had gotten to spend more time with her? Or would it have been easier if I had gotten to spend less time with her? Do I wish things could have turned out differently? This list of questions could go on forever. "The grass is always greener" if you waste enough time looking for a greener field. But... it doesn't make your actual field any greener by focusing on someone else's.

With all of the "what-ifs" and "if-onlys," that I could endlessly wish for, I have to focus on what actually was in order to keep my sanity and to be able to move forward in life.

I was pregnant with a perfectly developing baby girl.

Rylee was born too early but...

...it was not my fault.

She was fragile but...

...she was alive.

Her chances were slim but...

...there was still hope.

I was happy.

I was excited.

I was in love.

After becoming aware of the reality of Rylee's deteriorating condition, I was worried.

When I officially found out that she might not make it, I was overwhelmed.

When I desperately turned to God for help and guidance, I was strengthened.

When I was told she wasn't going to make it, I was heartbroken, but...

...I was able to be strong when I needed to be.

I was able to hold her in my arms, next to my heart, which helped me be able to breathe.

I was there for her in every way that I could be for her short life on earth until her little heart stopped beating.

I was relieved for her to pass away and to not have to suffer anymore.

I was at peace with God's will because I knew He had the power to save my baby if it was the right thing to do, but He chose not to for a greater purpose that is beyond my limited mortal comprehension. 

Those are the facts. Although there are a lot of things I could wish were different, I have to count my many blessings. I am so grateful that I got to see her while she was alive and meet her. I got to name her, touch her briefly, and talk to her. Eli got to meet his sweet baby sister when there was still hope that she would survive. She was perfectly healthy except for the complications due to her lungs being too young and underdeveloped. I got to hold her in my arms before she passed away. I got to kiss her and sing to her. I got to be there as she passed away painlessly and peacefully. I am blessed with the knowledge that I will see her again someday, that she is my daughter forever, and she is in a better place now. 

Our one and only decent family picture with all four of us while she was alive. Families are forever.