Monday, June 13, 2011

Screeching Halt

Two months ago, I was offered an amazing new job. One month ago, we moved across the country. Fifteen days ago, our lives changed.

Ryann was happy and healthy her whole life. Other than a few colds and an chronically stuffy nose (no doubt due to our cat roomies) she never had any physical complaints. Oh, and the bumps and bruises from her daredevil ways. Ha! We put her down to bed at 8pm on Saturday, May 28 and she fell asleep like a champ. She had eaten normally, pooped normally, bathed normally, drank normally. Nothing was amiss. She woke up suddenly at 10pm crying. I went in to her room to try to lay her back down and as I started trying to calm her she threw up. Jared and I were able to clean her up quickly and I sat down to cuddle her while Jared re-made her bed. A few minutes after I sat down with her she started to become agitated and threw up again. Jared and I assumed that she must have picked up a bug at the park or Children's Museum. Since she was wide awake and very agitated we decided to get up with her and let her hang out in the living room with us for a bit. She didn't want to be held, so I let her onto the ground. She sunk to the ground, she seemed so weak. She was starting to look tired and we assumed that she would settle down and be ready to be put back down soon, but she just couldn't seem to find a comfortable place to rest. She kept scooting around on the ground on her belly. She didn't have the strength to get up on her arms, instead pushing herself around with her legs and on her chest.

We brought her to bed and all laid down. She still couldn't settle down. I suggested that Jared call a nurse to ask if we should get her checked, but since Jared doesn't know the area as well, I ended up stepping out to the living room to find a number to call. I spoke with a nurse at the emergency room and explained what was happening as I walked back into the room with Jared and Ryann. That's when I noticed that she had a faint blue cast around her mouth. The nurse suggested that we bring her in, since she seemed so incredibly weak and lethargic and was quickly getting weaker. We decided to drive her in ourselves, since we're only a couple miles from the hospital and we weren't even sure if our health insurance had kicked in yet from my new job.

The whole drive in to the hospital Jared sat in the back with her and was slapping her thighs and moving her arms and yelling for her to wake up and push his arm and open her eyes. As soon as we ran into the emergency room they took us straight back into a room and started an IV, they said that she looked dehydrated. A little while later I heard the doctor talking to some of the other doctors and nurses and telling them how she had looked so blue and pale when she had come. They did a chest x-ray, head scan, multiple blood tests, and a urine sample. The only things that showed up were a slightly elevated white blood cell count, blood sugar, and low potassium. All of which would be expected when someone has vomited and doesn't feel good, nothing unusual. They had monitors on her and an IV running, so she couldn't flip onto her belly, her preferred mode of sleep. After they had the IV going for a bit she seemed to perk up and we started feeling a lot better. We were thinking that she had just gotten sick and needed rest, which she wasn't getting with all of the monitors on her. We asked when we would be able to take her home, but they told us that even though she was stabilized, her vitals would have to get much better for her to be released.

After several hours her vitals were still the same, no improvement. That's when they started talking about transferring her to the Omaha Children's Hospital and doing a spinal tap. We really didn't want to do a spinal tap, since she was already not feeling well and it's such a painful procedure. They told us that they would let us have until 5am to see if she improved by then.

The whole time in the hospital Jared and I were holding her. She tried to rest and did sleep off and on. She kept waking up, pulling out her pacifier, pointing at the door and saying 'All Done!'. She wanted to go home. I asked her if she had any ouchies and if she needed kisses. The first time I asked she gave me her toe, but after that she just shook her head no. She wasn't in pain.

Jared passed her to me at about 3:30am. Pretty soon after I was holding her I started noticing her breathing getting quicker and more labored. She had been extremely hungry and thirsty most of the night and had a bottle, some pear sauce, water and pedialyte earlier. She kept asking for more water, but we just couldn't give her any more since she had already drunk so much. She started acting like she needed to throw up again and finally did spit up some water. After that she started having a gurgle in her throat. I thought she was going to throw up again, but she never did and I think I started panicing. By this time there were a lot of people in the room and I kept asking them 'Why is she gurgling?' but no one answered me. I think I knew then that she was going. That's when she started passing out. She would go completely unresponsive for a minute or so and then be back and then back out. They got her oxygen and then she started throwing up. Then it started coming out her nose. Jared was grabbing paper towels and trying to wipe her face clean. That's when they told me 'okay mom, we need you to get off the table fast'. They picked up Ryann and I untangled myself from her cords. She had passed out again and she never did come back. That's something that Jared and I are so thankful for. She never woke up and was surrounded by masked strangers poking her and no sight of Mommy or Daddy. That would have hurt even worse. We stepped out of the room, they called for a crash cart and pulled the curtain shut.

Of course I still hoped that they would come out and tell us that they had stabilized her, that she would be okay. But I knew that she was gone. Jared didn't know yet and was able to be strong for me so that when they did come out 45 minutes later and tell us that they had done everything they could I could then be strong for him. He sounded like a dying animal. It is so painful to see him hurt so badly. They had tried everything and pumped her so full of medications in order to try to jump start her heart again, but they were never able to resuscitate her. It was unreal. It is unreal.

She woke up at 10pm. We were at the hospital by 10:45. She died at 5:03am.

No one had any idea what happened. The team from the Children's Hospital got there about 15 minutes before they pronounced her dead. There was nothing they could do.

We were able to hold her for hours afterward. We sang to her and told her stories. We tried to memorize her face and birthmarks and hair.

The police had to ask questions, examine her body, and search our house. Although it was hard to talk to them so soon, they were so extremely kind. Everyone involved was so broken. The nurses and doctors and police and chaplain. No one could believe that she was gone so quickly and so mysteriously. The doctors at the Children's Hospital ordered an autopsy. As hard as it is to know that her body had to go through that, it is so good to have answers now.

Two days later, after what seemed like an eternity of everything swirling around and around in our heads, we finally had answers. We found out that Ryann had what they're calling mobile bowel. It is extremely rare and doesn't have an official name. It is a degenerative disease that affects the connective tissues that hold the intestines and bladder in place and connected to the stomach. She had never had any problems up to this point, but we had been lucky. She had none of this tissue. Her intestines and bladder were free floating and it's a miracle that she lasted this long. Although it doesn't make losing her any easier, it is good to know that there truly is nothing that we could have done to prevent this. Her bowels and bladder must have twisted at some point in the night and by the time we were at the hospital they were dead and so she had no pain when they prodded her stomach. This is why her white blood cell count was up, her body was trying to fight the toxins that her dying organs were already releasing.

What happened was terrible, but it could have been so much worse. If we wouldn't have gotten to the hospital so quickly I think she would have died within the hour at our apartment and we wouldn't have had that time with her alert at the hospital. It could have happened while I was in Lincoln and Jared was with her in Walla Walla. It could have happened in the ambulance on the way to Omaha with Jared right there while they were working on her and I was still in Lincoln. It could have happened on an operating table. It's awful, but it lifted our spirits that day.

On June 9 we sat in our new church and had our little girl's ashes in front of us in a tiny cherrywood box. We were surrounded by family and friends as we all remembered. We remembered the amazing little life that Ryann had. We will always remember.

8 comments:

  1. Damie and Jared this is so touching...I read it when you first posted it and I just read it again. With tears of course for your strength through all of this. The picture is beautiful, the memories are beautiful and I pray that her memeory will be as vivid as the colors in that picture until you greet eachother on that gloriuos day at the resurrection.

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  2. I came across your blog from a comment you made on girlsgonechild, and read from the present day up to this point where you lost Ryann. It absolutely breaks my heart, especially since my little boy Liam is the same age as Ryann would have been. I am sitting here with a lump in my throat and tears in my eyes, and I know nothing I say will make it any better, but I just want you to know, I am so so sorry for your loss. xxxxx

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  3. I'm so sorry. What a beautiful, sweet girl.

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  4. I read this story after you left a comment on panicroom - I have no words...I'm so sorry for your loss. This is heart breaking.
    xxx

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  5. Hi Damie. I don't know if you remember me but I knew you and your family from Bremerton. Deena N. posted a comment about you and I felt I needed to search what had happened. Thank you for sharing your story about your sweet little Ryann. My heart is so sad for what you and your family went through. I know you look forward to heaven to be reunited. God bless you and your family.

    Nancy

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  6. Hi, you don't know me. I stumbled onto your blog over a year ago via a mutual friend on FB. I had just welcomed my own first born daughter, and your story broke my heart in two. I have thought of your story often in that time, but I still haven't thought of anything meaningful to say. As my daughter is now a toddler, I am even more aware of how I can't imagine what you and your husband have gone through, and I broke into tears again reading your story today. Your daughter was truly beautiful. Best wishes, Liz.

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  7. She's just beautiful. I'm so, so sorry for your loss.

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  8. Extremely touching. I know Jared from a class I took at UNL. I have 2 small boys who both have had chronic health problems in and out of hospitals for a long time. I cherish everyday I have with them. I have not experienced anything as painful as watching a helpless child. But to lose one I imagine would be unbearable. And to have that life taken in one day, there, and then not. Peace to you and your family. Thanks for the courage to share your story, and create more life to enjoy. I believe that you will hold your baby again. I hope you believe as well. Your blog brought many tears but I am thankful for them. Many prayers to you.

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