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.

Monday, October 1, 2012


Today was completely busy. Many things happened. The most important event occurred around 1:30 p.m. Natalie's breathing tube was removed. The respiratory therapist and the doctors felt like the tube was creating too much anxiety with her and felt they needed to bite the bullet and just remove it. This was the greatest news to us and came without warning. This idea was no where in the works today, but it was exactly what needed to happen. Tyler and I just feel like the nurses and doctors have been very in tune regarding Natalie's care.

The breathing tube was becoming very difficult for her to manage. She was mostly awake while intubated. It can be the most freighting and uncomfortable thing. She struggled the entire morning desperately trying to communicate things to us. She couldn't talk because of the tube. She acted like she was yelling to communicate. We tried to remind her that we understand that she wants to tell us something. She often pointed to places on her body that itched or needed attention.

Occasionally she would show some signs of relief and comfort.

I asked her if she wanted Daddy to give her a blessing. She nodded; Tyler gave her a sweet blessing.

I finally realized that she must be incredibly confused as to what was happening. I climbed up next to her on the bed and gently spoke in her ear. I explained to her from the beginning of how she became in this situation. It was apparent that she needed that and could not remember how she became in such a situation.

She would point to things and I would explain what it was. I introduced many new faces to her.

Alice came to clinic today and afterward came to Natalie's room to visit. Natalie seemed happy to see her.

I knew that I needed to take Alice to her orthopedic appointment. at 3:30 for her hard cast. I really wanted to be able to take her....however; I felt I couldn't leave Natalie while she was so agitated.

Tender Mercy #1-- I was getting ready to leave with Alice, but feeling horrible about it--just then the doctors walked in with the respiratory therapist and announced that they are going to jump ahead and remove Natalie's breathing tube. I immediately felt a huge sense of relief and knew it was the right thing. It was done in 15 minutes; in fact the respiratory therapist asked Natalie if she wanted to do it herself. Of course, she wanted it out. The very moment it was out she took a huge sigh of relief with a big breath of room air. It was a beautiful thing for all of us. My eyes began to swell with happy tears.

We thought Alice was unaware as to what was happening, she was sitting in a chair away from Natalie, but over in the corner as the tube was removed we heard Alice cheering..."Hooray, Natalie!"

One of the first things Natalie said was, "Am I in the white hospital? Where is the window? Is this the basement?" She is so familiar with the fourth floor and beautiful views that she felt disoriented here in the PICU.

The next thing she said was, "Who is spending the night with me...MOM?" Of course I am Natalie....Of course! Grandma Schellenberg was visiting at the time, which also gave Natalie more comfort.

It was time to take Alice to get her hard cast. I felt 100 times better leaving Natalie knowing that she was happy and comfortable. Tyler stayed with her while I left with Alice.

Alice was very excited about a purple cast. She will wear the long leg hard cast for two weeks, receive another x-ray, and then change to a short leg cast for another couple weeks. She thinks the next one will be pink, in which we hope for the kind she can walk on.

When I arrived this evening to be with Natalie again she was happy to see me. Tyler had been playing UNO with her. Later Grandmother Fish and Aunt Amberly came to visit. She enjoyed the visits.

Tender Mercy #2--Natalie is hungry, can only have clear liquids, she's upset she can't eat. She decided that a slushy would suffice. The nurse asked her which flavor she would like. Natalie said lemon. The nurse explained to Natalie that they only have orange and pink. Natalie really wanted lemon. The nurse said, okay I will see if there is lemon, knowing there is only orange and pink...this is all they ever have. A few moments later the nurse walked in with a surprised look on her face. She handed a lemon slushy to Natalie. I asked the nurse if they change the flavors ever, she said she has worked here for a long time and has never seen other flavors.

It is very obvious that Natalie's improvements and sweet moments are delivered to us through answered prayers of so many...THANK YOU!!

Just before Natalie fell asleep she said to the nurse, "Oh dang it...I was home, riding my bike and scooter, I was at school, I woke up and it was a dream."

Medical Status Update:

CT Scan indicated nothing.

Cerebral Spinal Fluid was clear, however her white cell count was elevated at 25. It should be 5. This could indicate a type of meningitis (inflation or infection), but not likely. At this point nothing has grown from the CSF.

Her VRP (nasal swab) was negative.

Nothing has grown yet in the blood cultures.

Aspergillus was positive (fungal infection)...more information to come.

Tomorrow she is scheduled for an MRI on her brain.

Natalie is dizzy, still not at her mental status baseline. She comes in and out. She is looking good, compared to this morning and yesterday. We hope her mental status will improve each day.

She has two IV's, One artery line, a central line in her leg and a catheter.

She has a scratchy and sore throat from the breathing tube.

The infection she has is/was septic. When she was given meropenem her body went into a spin as it was breaking up the infection. It later stabilized and had improved. This was hopeful and helped her septic status greatly.

Septic infections create low blood pressure.  Seizing creates high blood pressure.  It has been a challenge to keep her blood pressure under control.  She is taking Norepinephrine keep her blood pressure up.  As long as she is on this medication she will be in the PICU.

Maybe tomorrow they will move her to ICS.

Tyler and I feel much better today. I will admit that yesterday shook me pretty good. Tyler was calm and confident that she would be well. I drew strength from Tyler and it helped me greatly.

It's hard loving someone so much and wondering over and over again if they will be with you one day and possibly not the other. I know Mom's have to be tough, still it's hard to protect your heart where it hurts most. Many times I have reminded myself that Heavenly Father knows what he is doing, I trust him...I do.

Thank you for the texts, words of encouragement, messages, etc. It makes a big difference.


This is a long post and must have plenty of errors...I just needed to hammer it out so I can get some sleep.

Natalie was trying to smile...and that is one tired/worried Mama.

The artery line in her wrist.  It looks very tender.

pumps and monitors

Listening to Grandmother's voice on the phone.

Alice came to visit after clinic.

Natalie smiling so cute with Grandma Schellenberg.  So happy to have the breathing tube out!
I had to get some pictures of "the white hospital" for Natalie to help her confusion, her PICU room is in the center of the second story of windows.
South Side
North Side/Main Enterance

Alice's purple cast...I think she was winking for the camera.  Anytime I carry Alice she will  say; "Can I take my leg with me?"

Aunt Amberly and Grandmother Fish with Natalie...getting sleepy.



  1. Tender mercies all around! We love you!

  2. This post cheered us up greatly. We were worried for Natalie. We pray she continues to improve quickly. Love you all.

  3. Natalie,
    I am so happy that you are getting better. I was worried about you. I hope you begin to feel better soon. I cannot wait to play together again when you get home.
    Love you, Grace

  4. I have kept you all in my thoughts, and I'm glad to read that Natalie got the breathing tube out and is doing better. I also enjoyed seeing Alice's purple cast! ;-)

  5. Thinking of you and your family! We are so glad that Natalie is doing a bit better and that Alice has an awesome purple cast! We are praying for you guys! Glen and Katherine Murdoch and family

  6. So very glad to hear Natalie was extubated! I have been thinking of you and praying things get easier for your family very soon. I will be keeping a close eye on your blog. I am so glad I got to see you. I am back Wed morning, so I will try and check on you then. Hugs to you all!
    Sarah Wawrzynski

  7. WONDERFUL news! Yay, Natalie!!! And hooray for lemon slushees! I think that is just about the very best flavor in the world. I will have to enjoy one soon and pretend we are sharing it.
    Alice's pic with the mask is kind of really really cute.
    So happy for good news.

  8. Such great news!!!! praying still. love you all!

  9. Lemon Slushies brought tears to my eyes. Tender mercies for sure. We are praying for you and LOVE you guys so much. I need your cell number-text me yours. Mine is 719-645-5714. I would love to give you a quick hug next weekend when we are in Utah. Love you Lizzard! xoxoxo