Surgery Recovery-Still in Progress

Jonah showing off his new shunt. He is super handsome. And maybe a little medicated:) I especially love seeing his duck-fuzzy hair.

The idea of a shunt is to put a valve into the right side of the top of his head into the ventricle (where the water is accumulating) with a tube attached to it that runs behind his right ear, down his neck, and empties into his heart. When the pressure is too great in his head, the valve releases the excess water. So no more headaches for Jonah!
I don't love pictures after surgery because he looks so out of it. But this is real life, my friends! He is naked in a bed warmer because he went hypothermic after surgery. He impressed everyone by being the COLDEST PATIENT EVER to be seen on their floor. Of course he recovered with many people bustling providing lots of help.

This morning we went to radiology for a ct scan and some xrays to make sure the shunt is in all the right places. He looks so little going into that huge machine.

Notice all the blankets? He's also got heat packs wrapped up in there. No one wants to see him get cold again.
Now we're just waiting for the ct scan and xrays to be read and for Jonah to be stable enough to come home. He isn't breathing great, but still doing it on his own. He is acting a little stressed. Dr. Kestle said we ought to wait a while until Jonah is fully ready. I agree. (Hurry Jonah!)

I am enjoying our stay at the hospital this time. Sometimes its super stressful. Last week when I took Jonah to schedule a shunt surgery it felt all wrong. This week I know this is exactly where Jonah needs to be and don't want to race home before he's ready.

We can do almost anything and be happy about it when we know its right, right? But next time I'll bring a change of clothes, a toothbrush (don't worry, they found me one) and a good book.

Successful Surgery

We are thankful to report that all went well in Jonah's surgery. Our other two special needs boys had this same surgery. Josiah's lung calpsed after the surgery and he never recovered. So, we are very grateful that Jonah's surgery has been a success. He has a handsome new shunt and is recovering without needing to be in the intensive care unit. Behka is staying the night to watch over him at the hospital. The rest of us were thrilled to hear the news about his surgery while we stayed home and watched movies in the comfort of our warm home. We are amazed by Behka's strength, grateful for the doctors and appreciative of all your prayers and support.

Thank you

Snow and Surgery

Jonah's head continues to grow. He has shunt surgery today at 2:30, if I can make my way through the snow storm to get there:)

A Blessed Day

Every Mother loves the day of her baby's blessing and Jonah's was no different. Jonah has been doing so well and has been so stable, we wanted to share this special occasion with our ward family, so the day after Christmas Jonah was blessed at church.

Jonah has many aunts, uncles, cousins and grandparents who love him very much.

We are so grateful for the Priesthood and the worthy men who bless so many lives.

Jonah comes from a family of good and strong men.

Proudest parents ever!!! What a gift a new baby is.

Jonah's blessing was absolutely beautiful. Afterwards, Rob shared with the family his tender feelings as the father of this special child. It is very humbling to remember as we race around trying to care for his physical needs, that there is so much we can learn from him if we can slow down long enough to be taught. He has already taught us great treasures of truth, but I know he has lots more to teach us, because we have lots more to learn:) We are so happy Jonah is part of our family.

White Family Christmas

Christmas Eve we act out the Nativity. Jonah enjoyed playing his part.

Opa narrated the story from Luke. Oma supervised. (I think there is a chance we over-worked Oma, who takes any occasion to catch up on her sleep.)

Here comes Joseph and Mary on her donkey.

Mary and Joseph learn there is no room at the inn.

So Mary wraps her baby in swaddling clothes and lays him in a manger.

And a new star appears...


As the angels declare 'Fear not!' to the shepherds.

And everyone comes to adore the New King...

Bringing gifts of love and hugs and slobber kisses. Then the wise men arrive bringing music and sharing talents. Uncle T on the guitar...

Mariah on the violin...

Ezra and Nathan on the bag pipes...

Aunt Moana singing a solo...

Opa accompanying the choirs of angels on the violin...

Tahlia on the piano...

Tai Nui and Ezra singing a duet...

And Nathan singing a solo. It was a lovely Christmas Eve celebration with our extended family, whom we love having so close!



Christmas morning arrived bringing much cheer and excitement from all Christmas elves.

Mariah striking a pose...In mom's Christmas shoes?

Tai Nui stacking his jenga blocks...

Jaya dressed up as the fairy princess she is... Mom and Sydney also decked out as fairy princesses...

Tahlia and Jonah soaking in the peace. The best gift of all this year was certainly having Jonah in our home. He is so peaceful and sweet and reminds us what Christmas is really about. Things don't really matter. People matter. Families matter. We can keep what matters forever, because of the Babe born in Bethlehem and the great plan of happiness. Merry Christmas!

Coming Home

Before leaving the NICU we got quite a bit of instruction for Jonah's home care. First we learned how to place Jonah's feeding tube in case it gets pulled out. It's a little tricky, his nasal canal is so teensy! We also learned about suctioning, how to care for Jonah's skin under all the sticky stuff on his face, how to move his oxygen sensor, and when to freak out if the alarm starts sounding because its not always an emergency. We learned how work his feeding pump and oxygen supply. We discussed CPR and other life saving heroics.

We are officially home care professionals by now.

Then we dressed Jonah.




Then Jonah had to pass his car bed test. He had to lay in his car bed for 1 hour and 10 minutes (because that's how long it takes us to drive home) while breathing normally and keeping himself warm. He passed with flying colors.

Jonah's nurse Amy gave her approval and we were FINALLY out the door!

When we got home, Home Health brought us a huge tank of oxygen plus a few smaller portable ones...
Accessorized with 50 ft of tubing (which stays surprisingly untangled!) so he can go almost anywhere in the house...


Jonah's feeding pump...

An oxygen sensor that reads how much oxygen his body is getting equipped with bells, alarms, and whistles...

And finally my least favorite machine, the breast pump. Pumping is truly the worst part of my day and I have to do it "Every 3-4 hours for 10-15 minutes, even at night". My husband assures me that Jonah appreciates the gesture. Ugh.

And with Jonah home, then began the wonder of a little girl on her tiptoes...

So she can be tall enough to peek at her brother in his bassinet...

Of Grandpa loving his newest Grandson...
Of a sister spending as much time as she needs...

Of a 5-year-old loving her brother completely and entirely...

A brother trying to figure out the best way to entertain a little one...
And our teenager spending her best hours with Jonah.

Life is a little hectic but completely worth it. Its amazing how a new baby always changes the atmosphere of our home, and Jonah is no different. Home can be a heaven on earth and Jonah brings us a little closer to that ideal.:)