Joy Part 3 The Dark Night of the Soul

By Naomi Barringer
June 1st 2011 I woke up at 5:30 A.M. I realized that my water had broke. I was exactly 37 weeks. I called my midwife, Dawn, and she said to come in within an hour to an hour and a half. I went to wake up Jim who had gotten up in the middle of the night to help Jacob. Jake had a bloody nose and Jim had fallen back asleep next to Jake on his bed. I tapped him on the shoulder and said, “My water just broke” he casually laughed and said, “shut up”. I assured him that I was not kidding and he immediately bolted out of bed. We had nothing prepared for the hospital and so we both worked to quickly pack a bag. I took a shower & kept thinking to myself, “This can’t be happening!” My mother was in Nebraska spending time with my sister and her husband. We called our neighbor Stephanie across the street, who has 5 of her own children, and she gladly agreed to come over to watch our boys until Jim’s mother could arrive from Buffalo, MN.



We arrived at the hospital & and I still was not in any pain so we tried to get things going by walking up and down the halls, bouncing on the birthing ball, laying in the bathtub etc. At 2 PM, over 8 hours after my water broke, I let them give me Pitocin to help move the labor along. The baby was posterior (face up) which complicated the labor. I labored for 4 ½ more hours until Joy Dianne arrived at 6:36 P.M. I pushed her out while on my hands and knees & pulled her up through my legs. I immediately thought she looked just like our Jacob James. She was full of “cottage cheese” & didn’t cry at all. I was so thankful to have her out that I didn’t think anything of it. My mother had arrived just in time, after driving 7 hours straight, to be there when Joy was born. I was proud to tell her that Joy’s middle name, Dianne, was because of her.


The nurse took her to check her out and tired to get her to cry a bit, she did a little, but still no one realized anything was wrong. Joy nursed on both sides which was beautiful and wonderful! When they checked her blood sugar it was very low – 24 – it should be above 45. I had gestational diabetes so they had some concerns for Joy as well. They said they needed to give her some formula orally. However when they attempted to feed her they noticed her breathing was labored. Our nurse called in another nurse just as our boys and Jim’s mom were arriving to see Joy. It was a real scary time for the boys to be in the room and they were only able to see her a few minutes before they quickly took her to the level 2 nursery at St. Francis. Most of the initial concern for Joy was that she may have been fighting an infection because of the group B strep that I had tested positive for in pregnancy. I went to see her in the nursery and wept when I saw that they had her hooked up to oxygen. The nurses told us that if Joy’s condition didn’t rapidly change that they would have to take her by ambulance to Children’s Hospital in Minneapolis. They were not equipped to handle Joy’s needs at St. Francis.


Joy’s condition did not improve and in fact, it steadily got worse. A team came from Children’s hospital to transport Joy. They arrived around 10 PM (3-4 hours after Joy was born) with four people and a lot of equipment. I was overwhelmed. Physically I was exhausted after just giving birth and emotionally I was a wreck. “What in the world was going on?” I had to sit down. Jim took me back to the room. The hospital agreed to discharge me so I could be with Joy and Jim in the hospital at Children’s. When we arrived at Children’s around midnight the ambulance still hadn’t arrived. Both Jim and I felt a sense of dread. “What if she didn’t make it? What if we weren’t there with her?” We sat in the hallway of the NICU (Neonatal Intensive Care Unit) waiting for what seemed to be an eternity. Why was this happening? I began to second-guess everything in my pregnancy. Every detail was running through my mind. What could I have done differently?


The elevator doors opened and there they were wheeling a cart with Joy in her incubator / oxygen machine on it. Angela, who was a neonatal nurse practitioner, stopped by and talked with us. She told us that she had trouble with Joy’s oxygen / breathing & she was under such distress that they had to intubate her. We later found out that she had a pulmonary hemorrhage (bleeding from the lung) as a result of trying to get so much oxygen into her lungs. We finally got into Joy’s room with a team of people working on her. We were inundated with paper work and information. One of the doctors came in and said that Joy probably had an infection and that we would be here a week at the most but that she would ok – whew! Finally, we felt some relief.


We were told that we could stay in the room with Joy. They had a couch that folded out for Jim and me to sleep on. There was no room at the Ronald McDonald house (on the same floor as Joy’s intensive care room) and they had to prioritize those rooms based on needs of families. A social worker came and asked us what she could do for us. She was a wonderful advocate and explained all the wonderful things that Children’s offers to support families while they are with their children in the hospital. She gave us a $45 gift card for the Starz Café that the hospital provides for nursing / pumping mothers, a discount on parking, a breast pump to use, and evening meals at the Ronald McDonald house. Oh my goodness, what a blessing & amazing provision in our time of need. She also offered to look into getting us a night or two in the Ronald McDonald house if a room opened up but explained again they had to prioritize rooms based on need. Both Jim and I were so exhausted but we felt we could rest knowing that Joy was going to be ok. We tried to sleep on the futon but we were both restless – sick to our stomachs due to the traumatic events of the last 6 hours. I started praying right away. Wednesday night flowed into early Thursday morning and Jim and I got moments of sleep throughout the early morning hours.


Thursday was the worst day of my life to date. It was a roller coaster of information and emotions as things spiraled out of control throughout the day. One of the doctors had come by early in the morning to explain that Joy had something called pulmonary hypertension but not to look that up because it would freak us out. At the time, they considered Joy’s case mild and not one of the more drastic versions of pulmonary hypertension. It was a serious problem but the doctor didn’t want us to be unnecessarily concerned –whew – another glimpse of hope. They felt they were still able to help Joy recover and that she would be ok. Joy’s condition however got steadily worse. The doctors and nurses kept having to turn up Joy’s ventilator more and more until they couldn’t turn it up anymore. She developed a pneumothorax (hole in her lung) and one of her lungs had collapsed. They had to put a chest tube in her to let the air out. They told us that would help solve the problem. But Joy got worse.


It all came to head late in the afternoon on Thursday. We were in the room with Joy and one of her nurses. (There was never a single second while Joy was in the hospital when there wasn’t at least one nurse in her room looking over her constantly, not a second. The care Joy received was nothing short of extraordinary. Most of the time there were two or three people looking over Joy and taking care of her.) The nurse who was in the room at the time very calmly said to us, “I’m going to push a button & lots of people are going to come into the room now.” She pressed the button and people from all over came running to Joy’s room. CODE BLUE! They were losing her. Jim and I had to leave her room. We saw the look of concern on the nurses and doctor’s faces as we walked down the hall to find a place to sit. We waited.


The doctor came out to inform us that Joy’s condition was even more serious now. She had the most extreme case of pulmonary hypertension. Most of these medical words Jim and I had no idea what they were talking about. In the moments we had between doctors and nurses we would read pamphlets and look up definitions, risks and treatments for all the things they were telling us about Joy. The doctor said they could not keep ventilating her. We were going to have to make a decision, very quick. She told us that were going to have to put her on ECMO or “she wasn’t going to make it.” That was the first time we heard the words that we had been fearing in our hearts. Weeping does not adequately explain what we did and how we felt. We had no idea what ECMO was. Through our tears we quickly tried to read some information the doctor handed us to help us make our decision. ECMO (Extracorporeal Membrane Oxygenation) would become a lung bypass for Joy. They were going to operate on our infant girl, put two tubes into her neck. This machine would take over for Joy’s lungs. Instead of Joy’s lungs putting oxygen in her blood and taking carbon dioxide out her blood the ECMO machine would do it for her while her lungs remained dormant and hopefully healed.


The procedure and ECMO both carried with them considerable life threatening risks but we had no other option. It was either risk ECMO or Joy had no chance at all. We gave our consent and they said we could see her before they prepped her for surgery. Before that point we were not allowed to touch her but now Leann (our nurse on the horrific day) said to touch her. We touched her and prayed over her. We felt they were helping us to say goodbye to her. How does one convey enough love a parent has for their children in a few minutes with just a light touch? We cried (my tears were falling all over her), we prayed and we tried to hug her. They whisked us away and the doctor made sure that we were aware of the awful risks (brain damage, brain bleeds, seizures, hearing loss and often death). There was nothing we could do. It was up to God now.


By now, there was literally an army of people praying. The prayer network that developed for Joy was astonishing. We went down to the living room of the Ronald McDonald house to wait. We were joined there by my parents, Jim’s mom, his step dad, his dad, his brother and Tim and Sharon Whitmore. We sat there as we were praying tears flooded my face but truly God’s presence was filling my soul. My dad has long talked about something called the “dark night of the soul” the darkest moments are lives where God doesn’t calm the storm but calms His child. It is a peace that can only be experienced when all hope in self or man is absent and can only be found in Him. It is those moments where relationship with our heavenly father distances itself from man’s mere religions. While we were praying the manager of the Ronald McDonald house interrupted us and let us know that the doctor wanted to see us. That was the longest, most sobering walk of my life down three hallways to meet with the doctor. The last hallway seemed a mile long. At the end of the hallway we could see the doctor standing alone. We were trying to examine the doctor’s face and body language as we approached him. Our feet felt heavy. We didn’t know whether to run to find out the news or to run the other way.


Ps 144:3-4 “O LORD, what is man that You care for him, the son of man that You think of him? Man is like a breath; his days are like a fleeting shadow.” (NIV)