Let's Play!

Jonah has a few angels that come to the house and help out. They are his Therapists. They work with his vision, his movement, and teach us how to help him progress.

This is Jonah's swing. It is equipped with things that hang in his line of vision and also hang on his hands so he has things to practice grabbing. The red beads have become a quick favorite. He likes their texture and he opens and closes his hand around them.

The pom pom is okay, Jonah doesn't love it, but he tolerates it. I think when he moves his hand on this side he is trying to get away from it.:) Not really, but it's harder to grab hold of. Its a different texture to explore.
Check out Jonah holding a binki in his mouth all by himself! This is a big deal my friends! Today we gave him a bottle for the first time ever and he LOVED it. He only got one or two teaspoons out on his own, but he swallowed it down fine. We would give him some, then give him a break, then go again. During one of these breaks, (drum roll please, for the big news)

HE SMILED!!!
Yes its true. A small, brief, intentional smile. I cheered extra loud to let him know that Mom wants to see a whole lot more of that action!

Here's what I take from it all. Jonah is learning. He is progressing. It is so exciting to me I can't hardly contain my joy. Keep up the good work Jonah! (Especially the smile-work!)

Do I not have the two most handsome boys ever?

Jonah's Eye

Who knew an eye infection could be so worrisome? To recap, Jonah doesn't close his eyes very well. He got a dry spot on his left eye that quickly turned to an ulcer. If the ulcer gets through the outer layer of the eye and inside, the infection could ruin the eye and it would have to be removed. The white part in his eye is the ulcer. It wasn't healing very well so last Tuesday the doc stitched his eye half way closed. (No, it isn't macaroni on his eye, its just protecting the skin from having the stitches rip through.) Then we can still get medicine in it, but it stays moist.

We saw the eye doc again yesterday and its improving, so he said we don't need to come back for 2 WHOLE WEEKS!! This is much better than going to SL 2 or 3 times a week.
The Doc asked if maybe we could stitch his eyes permanently. I said no. Eyes truly are the window to our soul. Its Jonah's only way to communicate and even if he can't see, I can see him. I need to see him. I won't let anyone take that away from him. Or me. He has the most beautiful eyes.

Jonah has great hair.

That's my boy.

This Week's Update

This has been a fine week. Let's see... Jonah has a cold. Monday night he spent the night in the hospital because he had water in his lungs and the doc wanted to watch him. He came home Tuesday. He still has water in his lungs but is on a serious antibiotic so it won't turn to pneumonia. We've seen his eye doctor 3 times this week and his eye is slowly improving. They want to see him everyday but I feel that's a little excessive. He also had an upper GI study done Thursday and is now officially ready for his G-tube surgery. That's scheduled for February 16th. Yay!


That's all the business part of it. Here are the good parts. I love spending time with Jonah. He is so sweet and content and pure and innocent. I am still discovering his personality. Besides seeing some of his obvious traits, it takes more time to really see him because he can't express himself very well. One thing I really love about him is that he is here. I imagine in Heaven before he came, he was told this body would have lots of limitations and his time would be short. And because we all have our agency, I imagine he could've said no. But he is here. He is ours. I love him for it.

We took Jonah to *basketball games* on Saturday and church on Sunday. It feels so WONDERFUL to have all our family together. We have kept him home and away from 'germs' but he got a cold anyway and ended up in the hospital, so now we figure he is here to be with us, and be with us he shall. Life is a lot more fun when we are all together.


While driving to Salt Lake for appointments, I have lots of time to reflect on life. During these reflections I see the Lord's hand and am made aware of the many people that are sharing in Jonah's journey. We have had so many people offer to watch kids, give rides, bring meals, bring treats, bring gifts, and share thoughts of love and encouragement. None of these sacrifices for our family go unnoticed or unappreciated. I need to say thank you again. THANK YOU! Jonah's influence is connecting people through love. It is quite remarkable. It is quite humbling.


Here's a "Mom" note. The good news is that I am still sane. It is largely due to the goodness of others, as I have mentioned above, and also, with much thanks to my mother-in-law. While Nana and Grampa lived in New Zealand they cared for a special needs boy until he passed so they understand Jonah in a way that only parents who have lived through it can. Nana has been coming over in the mornings and tending Jonah and Jaya so I can go exercise and do errands. She does the things that need to be done, be it laundry, or cleaning, or cooking. Most importantly, she holds and loves Jonah. My kids spend a lot of time with Nana and I am comforted to see Jaya become more and more independent and happy instead of clingy and whiny. I have to admit that some mornings I am torn... I feel like these are my children and I should be able to take care of them. But I recognize Nana's love for her Grandchildren and me and I remind myself that I can't do it alone-I don't have to do it alone- and I need to accept the blessings Heavenly Father sends. So I thoroughly enjoy myself.:) The half-empty cup seems to be half-full, or even overflowing, when I return home. Thank you, Nana.

*I have to share the 'miracle' that happened yesterday for Cousin Danja. She and Tahlia play in the same basketball league, she plays for Mountain View's team. Yesterday, Tahlia's Springville team only had 4 players show up and Danja had played the game before Tahlia's, so we asked her to be our 5th player. It was a tough game. We had the lead the whole game, and then with about 2 minutes left the other team went up by one point. With about 35 seconds left, Tahlia dribbled down the court, got double teamed, and passed to Danja on the block. Danja turned and shot. She scored the game winner!! It was the first basket she has made all season. It was so fun to see how excited Danja was, and how excited Tahlia was for her. I love cousins! I am so glad we could all be there to share in it.*

**One other thing that made me smile this week: Mariah's very persuasive "Top Ten Reasons I Need a Cell Phone" list. I just have to share #8. "I will feel very mature when I get a phone otherwise I just feel like a kid on a 3 wheeler bike! Sad, huh?" Ahhh, who knew 13 would be SO FUN? Love you Ry!**

Opposition

How do I start this pleasantly...

Yesterday I started crying just after lunch and stopped about midnight when I crawled into bed. Today my eyes and face are puffy and my head still hurts. But everything is ok. It all started Thursday when we went to see the eye doc. There was a small dry spot on Jonah's left eye ball. The doc said he needed 2 medications to avoid infection, because if it gets infected, Jonah could lose his eye.

Friday his eye got worse, and yesterday it was even worse. Instead of being clear, the blue of his eye is cloudy and the white of his eye is red. So I called the opthamologist on call and he told me come in. After approximately 2 hours of jumping through proper hoops for insurance purposes, we were in the ER at Primary Children's. Jonah had a fever and his breathing was irregular. The doc told me that she wanted to do blood work, a urinalysis, and a spinal tap to check for serious illness because babies that young shouldn't have fevers. I told them (like they couldn't see it) that he had an eye infection, and his fever was probably due to that. She told me that yes, that was probable, but with an immune system like Jonah's, an eye infection could quickly spread to his blood, or his brain, or his shunt... My sweet Jonah that has been so healthy suddenly went from stable to life-threatening illness in 30 seconds.

At that moment, I was holding Jonah and he was asleep with his eyes open. He had some florescent drops put in his eye earlier. His eye looked dry and gritty and cloudy and perfectly still. The same eyes that my other sons had, holding them after they had just passed away. Suddenly death was too real and too close. Looking at Jonah's other crystal clear beautiful blue eye, I could plainly see life in his eye. He was still with me. But I have held my sweet babies after they passed. It was too real. It was too close. And sitting in the ER with the bad news docs sucked the hope right out of me. So I completely fell apart. Why can't those 'falling apart' moments happen in private? I am not a crier. I don't cry. In fact I only remember 2 other times in my life crying like yesterday.

With my other boys, I have known when it was their time. In my moment of fear, I couldn't feel anything. So I let them take Jonah's blood and put in an IV. The opthamolgist scraped Jonah's eye-yes scraped his eye- for cultures. His blood counts came back normal-ish. I decided he'd had enough for the day. We battled the pharmacy and finally rolled home about 10 pm. Still crying.

A few weeks ago Rob and I were saying night prayers. Rob was expressing gratitude for the time we have enjoyed with Jonah and how well he is doing. Then he said, "we know that Jonah has other work to do". And the Spirit told me it was true. Jonah has other work to do. His mom doesn't very much like hearing about it. But it gave me a new perspective that I hadn't considered before. He is a blessing to us, loving us and allowing us to love him, until his precious time is up. His body is a blessing. And death, as horrible and lonely as it is, is also beautiful and merciful. It will surely come. So sometimes its ok to take off the brave face and cry. Preferably in private.

My day wouldn't be complete if I didn't share the tender mercy. As Jonah's and my day began, at about 1130am, we waited at the Moran Eye Center to see a doc. I met an older man who was a little rugged and rough who brought his friend in because he got a piece of metal in his eye while welding. We made small talk, he kept me smiling. When it was Jonah's turn to go back, the man asked me if my insurance would cover Jonah's appt. I was in the wrong building for my insurance, so I answered that I hoped so. He opened his wallet and gave a $100 bill. Who does that? WHO DOES THAT? I certainly can't dry my tears with a $100 bill, and $100 won't heal my hurt, but someone somewhere knew it would be a rough day and wanted me to feel the love. I am still feeling the love.

I am grateful for the love of a stranger.

I need to remember to be somebody else's stranger.

Jaya is Learning to SHARE!

Today, for craziness, I decided to go play basketball. I crave the exercise and miss my friends. Plus everyone wants to meet Jonah! So Jonah, Jaya, and I packed up and headed to the gym to meet the ladies. We have been playing for years. Anyway things were great until Jonah's oxygen monitor started beeping. When I got to him I realized that sweet Jaya was taking great care of Jonah and sharing her snacks with him. I pulled a piece of honey buzzer cereal out of his mouth and did a finger sweep. My pinky could feel one more piece further down his throat. I turned him upside down and gave a few wacks to his back and he started crying, so I knew he could breath. I did a few more finger sweeps and couldn't get that other piece out, in fact I was pushing it further down. It felt like a small broken piece, but it was definately down there. His oxygen was still really low so I hooked up his oxygen (with lots of helpful hands from teammates) and cranked it up and his oxygen level came up. I decided I'd have to take him to the emergency room to have them remove the darn honey buzzer. And while we were fussing over Jonah giving him a second to breath his oxygen, he spit the other cereal out. One whole full-sized, now soggy, honey buzzer. My boy who doesn't have a gag reflex and a very weak cough somehow managed to get that out of his throat. Nice work, Jonah!! I was one very grateful (and proud!!) Mom. Jaya now understands that there are no snacks for Jonah.

It makes me wonder how I have survived motherhood this long without an oxygen tank and monitor. I was tempted to hook myself up to Jonah's tank! Thanks to all my friends for not freaking out and helping me deal with the craziness.

Tomorrow Jonah sees the vision doc and has his brain tested to see if he can process sight. I am excited about this one. We want to understand what he's up to so we can help him reach his potential. On Thursday we see the g-tube surgeon. Also excited about that one because Jonah continues to reflux when he eats and has to have oxygen. Its getting worse. But Jonah battles through, spitting up and even swallowing. He has a lot going for him. It makes me excited about life for him!

Josiah

Today for fun I visited Josiah's website. I was struck by the contrast of Jonah's and Josiah's lives. Jonah is a month old and we haven't had a single crisis moment yet. Josiah's life was one big crisis sprinkled with a few beautiful moments of profound peace. I cried as I read the entries from the hard days. Bitter-sweet tears. So grateful. So grateful to be here and not there. So grateful for Josiah and the time we had with him. So grateful for Jonah's strength and how well he is doing. I am also aware that could change at any moment. Its a good reminder that life is precious and time is a gift.

Josiah's website is
http://www.caringbridge.org/visit/babyjosiah if you want to see my other angel.:)

What's New?

Do you notice any changes in Jonah? I'll give you a hint, there are 3.

First, he HAS NO OXYGEN CORDS ON HIS FACE! This is today's goal, to keep the oxygen off. I am monitoring him to see how he does and his home health nurse is coming later. Isn't he a beautiful shade of pink? We think Jonah can do it all by his big self.

Second, he is indeed showing his battle wounds. The wraps came off today. Actually, Jaya pulled his bandaid off his head yesterday and freaked out because of Jonah's "OWIE!!". She was crying and screaming about it. The empathy a 21 month old can feel is amazing. But then who better understands an owie than one so young who is constantly bumping and bruising?

And lastly, can you see that double chin of his? He is putting on weight. We need him a little bigger and stronger before we try the g-tube surgery. Doesn't he look great?

Yesterday Jonah, Jaya and I spent the ENTIRE day in Salt Lake for eye appointments. What we learned is that Jonah has a cataract that completely covers his right eye. The doc explained that in a normal child he would remove the cataract immediately or else the child would lose vision completely in that eye. With Jonah, we need to test whether or not his brain is processing sight before we do an unnecessary surgery. So next week Jonah has another couple eye appointments for testing things. Jonah responds to light, so I know he sees some. I don't know if the benefits of the surgery outweigh the risks. Hopefully we'll figure that out next week. I need a few good books as I hurry up and wait at these appts. Any recommendations?

A New Year

While the older kids spent New Year's Eve with friends Jaya stayed home to help Mom and Dad with Jonah. Jaya snugged Jonah while we watched a movie and then she fell asleep. Jaya loves her baby. Jonah loves his Jaya.

Jonah made it home Thursday evening from his surgery. He is doing well. Happy New Year!

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.:)