The Natalie & Alice Fish Story

We are the Fishes. In 2011 two of our five children; Natalie and Alice were diagnosed with a rare gene disfunction called Leaky SCID (Severe Combined Immune Deficiency). Their condition is so rare that only two cases are reported in the U.S. each year. Both girls have endured much, and have spent most of their young lives in and out of hospitals due to common illnesess a healthy immune system would overcome. The required treatment for our girls is a bone marrow transplant.
Although the new marrow could mean a normal life for them, it will be a long and arduous road. This blog is to share our experience as parents and the courage of our children.

Thursday, May 31, 2012

A Better Day

Tyler said last night was rough without having another hand, however, it was initially his idea to send me home last night, it worked out better anyway.  My parents brought Evie and the boys to visit yesterday and when Tyler saw how happy Evie was to see me and snuggle with me, he told me that I needed to go home and be with her.  I was so excited to do so.  Of course I was calling the nurses through out the night checking on Natalie and Alice.

This morning I dropped the kids of at my Moms and headed back to Salt Lake.  By the time I arrived Tyler had the girls settled.  It was a rough morning for Natalie.  She ended up getting an IV placed, and had another nasal swab. Two attempts for the IV and two attempts for the nasal swab.  She really is a trooper. 

Natalie also had another x-ray today, they thought they heard some fluid in her lungs.  We haven't heard back on the news can be good news.  She seems well to me.
We sure hope we can do some really fun things with Natalie soon, she is beyond ready for a good time.  We are so lucky to have the best view in all the hospital.  She and I sit next to the window and watch the city, and right below our window is some major construction, we have been watching the work move along, big empty dump trucks pull up next to the giant backhoes until their buckets are full then they drive away, dump the dirt and come back for another load.  Again another sign of boredom, I'm finding the construction so fascinating.  I think they need more dump trucks, the backhoes have a long wait period.  I've been analyzing their work and continue to check on the progress.  I surely do come from a long line of engineers and contractors, too obvious.  I've tried to get Tyler excited about it, but he thinks I'm weird.

We have seen a difference in Natalie today.  She must be feeling better, because she has been happier and hasn't complained too much regarding pain.  Her fevers have slightly improved.  Her PICC line must have been contributing to a portion of her fevers. 

The doctors would like Natalie to have another PICC placed on Monday.  I wish she didn't need it anymore, she is so close to not needing it.  Yet still a possibility that she can go without a line.


Feeling a little better

A yummy strawberry milkshake...bite #1

Bite #2

Bite # 3
She maybe had three bites total

The famous's so cute.  She is proud of her swirl.

Just playing around.


  1. Hi! You do not know me... I just found your blog through another blog and I am in awe of your life. I just watched the youtube video about your girls and have been bawling for you and your sweet family! I can tell you all have amazing courage through these trials and I truly believe that Heavenly Father has his arms around you and your family! Your daughters are absolutely beautiful and so precious! My prayers and thoughts are with you! I am so glad you had a better day :)

  2. progress is PROGRESS! I am so glad Natalie is starting to feel better! Happy happy day! Is Alice ever sad for more then a second? She is always smiling! I love the swirl :)

  3. Your family and kiddos have been in my thoughts and prayers! No news hopefully is good news! Such precious babies you have!

  4. Alice and Kyle are twinners!! Love you guys.