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, August 28, 2014

Official Results and Clinic/Labs

This past Monday August 25th, while in clinic with Natalie and Alice we received the official results for little Isaiah.  Apparently the bone marrow office received the gene testing results at the same moment we arrived to clinic. 
Isaiah does not have SCID!!!  
 I wish I could describe the feeling of relief that Tyler and I are experiencing...we have each been packing around an extra 20 pounds of weight in anticipation and worry for the past 9 months, and now to finally let it go; so thankful we thankful!  
Here's how it went:  
Doctor Boyer walked into the room and handed Tyler a piece of paper from the gene lab, like no big deal. Tyler began reading it while the doctor began to talk.  At first Tyler understood the results as positive for SCID.  I noticed that Tyler's demeanor suddenly changed, he had stress, confusion and worry written all over his face.  I was unaware of Tyler's confusion, but once he tuned into the conversation...about Isaiah NOT having SCID, Tyler instantly gasped for a breath of relief and perked up. 
This past week Isaiah had thrush...poor guy.  I will admit that when he got thrush I got nervous that maybe his immune system wasn't proper.  Thus the whole snow ball effect of emotions got away with me again, and I started to worry that he might have SCID.  Natalie had thrush as a newborn, however, her thrush took several weeks to clear up....thus an improper immune system.  Isaiah's thrush cleared up with Nystatin within 1-2 days.  It was so awesome!

In clinic this week Alice's labs were again wonderful.
ANC 3100
Platelets 194
Hemoglobin 11.4
Alice is still 100% donor!
Alice will continue to visit the bone marrow clinic monthly.
Which means....Yes it's that time.  Alice will have her central line removed September 2nd!  We are so excited for her to experience life without a line.  She is looking forward to being "free".  This particular line has lasted far longer than expected, two and a half years, we are thankful for it's durability.  She has had several PICC lines along the way too, but for Alice she has had a line attached to her for almost 4 of her 5 years of life.  Big step ahead for Alice. :)  On her next visit this means she will have to be poked by a needle for labs...that's the down side, but she can't wait to go swimming!

Labs for Natalie
Lucky Natalie she got to come along with Alice to clinic.  Not really.  She had to have lots of blood drawn for many many labs.  Natalie's yearly bone marrow check-up is next week.  It's hard to believe Natalie only needs to be seen yearly now.  Among the many labs drawn, some were for studies, others for bone marrow purposes, some for immunization titers, and lastly I requested an allergy panel, in hopes we might be able to pinpoint her hives.  By next week all results will be discussed.
I need to mention that Natalie did fantastic with the needle poke, neither Tyler or I knew it was happening, she just let the phlebotomist do it without a fuss (it helped that our favorite phlebotomist Elena did it).  I looked over and she was already drawing blood.  So proud of you Natalie!

A few funny things from the kids.
The night before we had our dear friends coming to visit we sat the kids down and told them to behave nicely and use their manners.  Natalie's reply was worth recording...she said, "So you want us to be something different?"
Alice and Evie were in the bathtub playing for a long while together...about 45 minutes.  They washed their 'My Little Pony' ponies hair a hundred times .  When they got out and dressed themselves I noticed that Evie's panties were on backwards.  I told her to switch them around.  She paused and looked at Alice then said, "I can't, because Alice will see my bum."  I guess the 45 minutes in the tub doesn't count.


Clinic for Alice and Labs for Natalie.  Don't they look so good and healthy!!

Brave Natalie!

You are a Pro Natalie.

The new fountains at Primary Children's Hospital.

Alice was throwing her money in and Natalie was trying to retrieve it,

Never a need for baby holders.
It's been a long time since we had cardboard pizza (frozen pizza).
With Natalie at school all day, we decided to cook up the gluten containing pizza that has been in the freezer far too long.
Our dear friends Annie and Woody came from California to pick up their new puppy "Hudson" and to visit.   My Brother in Law breeds Labs; it just so happened to work out that Woody and Annie were looking for a Lab.
The kids had a great time playing with all the puppies.
Good-Bye to our dear friends Woody and Annie and now Hudson!
Evie, Mariah, Malia (Cousins)
These little girls wanted to paint gloves on their arms.  Too bad it wasn't Crayola washable paint...thank goodness it was on the grass.

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 seen 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.