Meet Emily: Cystic Fibrosis Mom

As told by Emily.

Our story with cystic fibrosis all started when I went into pre term labor at 32 weeks pregnant and found out our daughter had a bowel obstruction. I was only 18 at the time and was terrified. This was also my first child so I was so clueless. 

We were being flown down to Sanford in Fargo for her to be able to have surgery after she was born. I remember the day she was born. It was November 3rd all of these people were in the room with us it was not a typical delivery where there are maybe a few people in the room– this was like a whole army of people.

 When she was born, she was taken to the NICU and the next day was to have surgery. I remember being asked if we had cystic fibrosis in our family at all and I had no clue what this was had never even heard of it. At this time, CF was just suspected, but once the newborn test came back, it was certain. 

I remember being pulled into a room to talk to the doctor and I knew something was up. The doctor told me the news that my daughter had cystic fibrosis. Of course I was an emotional  mess and so scared specially being alone getting this news, and knowing nothing about it. 

This is when I started to make myself more knowledgeable and able to tell my family. 

We named our little girl Annabella Rose King. She did great after surgery and did get a temporary colostomy bag until she was ready to have the second surgery of putting the bowel back together.

 The NICU was a scary place but also a wonderful place because all the nurses and doctors were amazing and made us feel like family. There will always be certain nurses/doctors I will remember for the rest of my life. 

After Annabella’s first surgery she spent time just growing and getting stronger and ready for her second surgery where they were going to put the bowel back together and she also received a g tube. 

She did well with her second surgery for a while and even eventually got to go home for two weeks. This is when things started to go downhill.

 Annabella ended up with another bowel obstruction so we had to go back to Fargo where she stayed until she was ready to have surgery again. She eventually did have surgery where she got a colostomy bag again but something was different this time with surgery. This time she never came back the same and never got off the breathing tube except for a couple of days. 

Annabella had many more procedures done and more surgeries. She wasn't doing the best but she was such a fighter. This was a scary time in my life as I was alone a lot of the time as her father still had to work and provide for us. My mind honestly makes me forget a lot of this as a coping mechanism so it’s hard to fully tell my story in full detail. 

Eventually Fargo sent us down to University of Minnesota in Minneapolis where we spent a few days and they told us that our daughter was dying. She needed a liver and small bowel transplant and was not a candidate because of the state she was in.  They also found out she had a few strokes and some brain bleeds. At this point our world was turned upside down and we wanted to go back to Fargo where she had been the last 6 months and where they were like family to us. 

In Fargo we had to make a decision no parent should ever have to.  We had to decide to let our sweet girl go home to God and no longer suffer or to keep trying. At this point we knew it was not fair to keep making her suffer. 

Fargo helped us through  this difficult time and made it peaceful for all of us we took her breathing tube out on Mother’s Day where she spent all day with us passing away after midnight. She passed on May 9th. 

Throughout her 6 months of life, she was the most smiley little girl ever–always had a smile but she was also a little spit fire. She touched so many lives and will forever be remembered . It’s very fitting that her middle name was Rose and she passed in may during Cystic Fibrosis Awareness Month. 

Now, let’s fast forward to life now. I have a son, and another daughter who also has cystic fibrosis. Her situation is completely different than my first-born Annabella’s situation. 

Adalynn, my second daughter with cystic fibrosis, is doing SO amazing and is healthy as can be.

 I remember getting the news that she had cystic fibrosis and my world once again was crushed. I was so scared and worried because of how things went with my first born. 

Everything was completely different this time though. She was born healthy and has stayed healthy besides catching a few bugs. Things are advancing so much with cystic fibrosis in such a good way.

 I am hopeful hat one day cystic fibrosis will have a cure and that one day my daughter won’t have to take all these medications and treatments.

 When Adalynn was born this is when I found out about the CFA of North Dakota and they have been amazing to us. They lift so much stress off of me. I know that if we ever need help getting anything for Adalynn such as but definitely not limited to medicine or medical equipment, they will be there for us and that settles my mind tremendously. 

They also help us travel to be able to get Adalynn to her cystic fibrosis team. Without the CFA I would have so much more stress and worry. It is amazing to know that we have help and support behind us.

 I never in my life thought I would have children with a genetic disease. It has changed my life completely. I now have to worry about medications, treatments, keeping her safe and healthy from certain things, health insurance, and many other things. 

I would not change it for the world though it has been amazing to be a part of the cystic fibrosis community!