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.

Wednesday, August 20, 2014

Welcome Baby!! Back to School!!

Hello World!!

Isaiah Martin Fish
Born August 11, 2014
6 lbs. 15 oz.  20 inches

Monday morning (Aug 11th) I called the University of Utah to ask when they wanted me to come in...I was being induced right at 39 weeks.  We planned to be induced for two reasons, we knew the drive to the University hospital was an hour drive, and wanted to be sure to make it in time, and I don't normally make it to my due date anyway.  Our other babies came very quickly.  We nearly didn't make it to the local hospital with them.  In addition, we knew we needed plenty of time to organize the cord blood collection and all the genetic labs that Isaiah would need to have done right at birth.
It worked out that when we checked in and monitored my contractions I was already in active labor having consistent was perfect timing for all we hoped to accomplish.  Baby came fast enough and everything was done properly.

I can't believe he is here...he is perfect!  I told Tyler that I feel like I can't set him down, because if I do--he will grow up too fast.  He is one week old and I'm already having a hard time with the fact that he might grow up.  Is this normal?  Honestly, I have not felt normal for 9 months...why should I worry about that now!
We could not have a more beautiful and perfect baby, he is smothered with love and kisses.  The moment he makes a squeak, five little people are to the rescue.  Some of his nicknames include:  Izzie, Z, Zaiah, ZZ, and every now and then Kipper.
As I mentioned in a earlier post the plan was to remain in the hospital for two weeks after the baby was born to ensure a germ free environment while SCID testing was pending.  Just minutes after he was born and the cord blood was collected, the NICU nurses came and took nearly 10-12 ml of blood from him for the many tests being sent.  I was told it took seven pokes to get that much blood.  Poor little man.  The labs were sent immediately.

Two days later (Wednesday) I was being discharged, and asked the doctors if I could take the baby home with me--rather stay two more weeks.  Both Tyler and I felt good about taking the baby home.  I was unofficially given the green light...then two hours before I was leaving they told me to plan to head across the sky bridge to Primary Children's where Isaiah would spend the next two weeks.  At that moment I got nervous that some labs had already come back abnormal.  Tyler and I began to anticipate the bad news.  Within the next hour a doctor with the University came to inform us that the preliminary Immunodeficiency panel had just been posted.  According to our immunologist all values looked good, and indicated nothing regarding SCID.  This was a huge relief, yet we know until the genetic results are back nothing is set in stone.  However, with this bit of information we were again given the green light to take baby home.  Yeah!!  Isaiah's skin is perfect, no signs of SCID rashes...unlike Alice who developed a terrible rash day two of life.

The past week at home with Isaiah has been good.

Today (Aug. 19th) the immunologist Dr. Chen called, we had a great lengthy conversation.  She informed me that his newborn screening panel had returned completely normal.  This is great news!  Because of the type of SCID that we carry (Leaky SCID) it isn't 100% certain that the newborn screening will catch Leaky SCID, so again we still anticipate the genetic results.  It is reassuring that so far their have been no indications of something abnormal.  Even Dr. Chen feels like if Isaiah has SCID we would have seem at least something odd or abnormal with all the labs that have been posted at this point.

Excitement...anticipating the arrival of baby.

This is for Natalie...Mom gets IV's too.

Delivery room and baby's bed that awaits.

So he fell asleep just after we checked would think we had spent all night laboring.  Just a cat nap I suppose, getting ready for the big moment.

About 20 minutes before baby arrived.

First moment with Mom.
Big Boy!

Blood Draws.

Just taking pictures of ourselves.

Freshly washed hair.

The kids were SO EXCITED to meet Isaiah.

One happy Natalie.

Grandmother and Grandpa Fish

Blair...a good big brother.

One last picture before going home.

Ready to go.

Just wanted to remember our room and the sky bridge to the Primary Children's thankful we could go home.

Tyler was in a hurry to get out of there...he didn't waste any time.

First time in the car.

He is not a fan of diaper changes.

First real bath.

Something about Mom and Dad's bed that makes naptime that much better, it's that time of day...afternoon.  Three sleeping little ones.

Any chance she gets to steal the baby's bottle...she will.
  Isaiah is good to take one little bottle a day, and it gives me a chance to let my supply catch up.

Alice's new favorite thing to eat...cream of wheat.

Family Night...the night before school starts.  Tyler was giving the lesson, and helping the kids to understand what to expect and how to behave, etc. etc.  You can see that they are very interested in what he was saying.  I was just impressed to get a picture of them all on the couch at the same time, which was a brief moment.

First day of School...2014!
Fourth Grade, Third Grade, Second Grade.

Natalie is testing out a specific program offered by the district and therefore takes the bus to a different school.  We decided to give it a couple weeks, if she does well--great.  If it's not the right fit for her then we put her back in the same school with the boys, and will get her in the right setting.
Update on Alice. 
Next week we will visit clinic and check her counts, likely schedule a date to remove her central line...if all labs look good.  She is doing awesome.  She had a little nausea a couple weeks ago, but we think it was from something she ate.  Dairy is still hard on Alice's tummy, but most other things are okay.  We hope and pray for a healthier winter this year than last year.

Saturday, August 9, 2014

Birthday Girls!

Happy Birthday Evie (3) and Alice (5)!

Evie's birthday is August 2nd and Alice's is August 8th.  I think it's best to celebrate them together when they are young.  It would be easier for me and for them.  It was hard for Alice to watch Evie's birthday and then the very same thing in reverse. I'm sure when they are a bit older they will prefer to have a separate celebration.  But next year it's going to be one party....can't wait.

I will say that Evie was the sweetest and most polite little thing all day on her birthday.  When she woke she was singing to herself the Happy Birthday song.  All day she was pleasant, even opening presents.  She shared everything with Alice.  I was so proud of her...impressive for a three year old.  Evie is such a lively fun girl.  

When Alice woke on her birthday, she came to my bedside very early in the morning and said into my face...."Peek-a-boo, it's my birthday!"  She then proceeded to the bathroom where she planned to comb her hair and look her best for the big day.  Shortly after I heard some whimpering from my bathroom and went to see what the trouble was.  She was discouraged, and said that she cannot be beautiful for her birthday because her hair had a bump in it that she couldn't comb flat.  She looked at me and said, "Mom, I need a birthday hat."
Not exactly the birthday hat she was hoping for....too big! 

Every day with Alice and Evie is an adventure...usually exhausting but surely I will miss these days when they grow older.  I over heard them playing with their dolls, each Alice and Evie were acting as  Mommies....they were talking about how their babies had too much diarrhea.  Such is the reality of Alice's life.  It was quite silly actually.

August 2, 2014
Tyler and Birthday Girl....Evelyn!!!

The simple way to do things.

Disbrow Cousins

Happy 3rd Birthday Evie!

Landon with Evie.

A new car!

August 8, 2014
The Big Five!
Evie, Natalie, Alice and Addie.

Alice and Cooper.