Pictures, Pictures, Pictures Jan 28- May 17

When you have a critically ill child, your life goes on hold. I stopped having the ability to really help my other kids with homework. For a time everything I or Andrew did was to help Lily. Yes, we were able to speak to our other children and we've tried our best. But some days are just exhausting.

Jan 28th, 2016

Lily after bath time. She hates baths, but I love making her hair all soft and fuzzy.


All clean and wrapped up in the blanket I crocheted for her.


Meeting Uncle Bryan. Bryan's oldest daughter Kate, passed away from complications of a genetic disorder also.

Jan 29th, 2016

Danny adores his sister. He is the most difficult child I have in regards to understanding that 'mom needs to help you hold her because of medical equipment.'

Jan 30th, 2016


I went to Target and found a couple of Carter's size newborn outfits on sale. She is adorable in this fuzzy grey kitty cat jumper!

Jan 31st, 2016

Lisa Woods (in my ward) brought us dinner.

Feb 1


Bath time, no strings attached!

Jeff & Karen Arnson, our home teachers, and Karen taught scouts with me for a long time.


Joni Villagomez, I'm her visiting teacher! Love this lady too!




Feb 3rd, 2016


Kris Bromley, she had a grandson pass away of T13.

Feb 5th, 2016

Sister from my ward, she brought us dinner too, I know her face, but cannot remember her name at the moment.


Kaitlin Blocker, I've known this delightful lady since 3rd grade! Though really, I think we must have known each other before we were born.


Feb 10th, 2016

Janelle Hillyer, she's in book club with me.

Feb 13th, 2016

Sporting James dinosaur blanket, as the other one with being washed.

Feb 15th, 2016


Her NG tube has been irritating her cute little cheek!

Feb 17th, 2016

My sister sent Sarah a Gryffindor robe and Hermione wand, she finished reading all 7 Harry Potter books!

Feb 18th

Sweet little daily yawns--- and complete insomniac days!

Feb 19th, 2016




I asked James to let me take pictures of silly faces.


Feb 20th, 2016

Grandpa Rosenvall came to visit, and shared a remarkable experience with me.

Feb 21st

Notice something wrong with Peter's seat? He was determined to sit there!

Feb 25th

A tiny smile!

Feb 27th

Brother Danny strikes again! "I give stickers to baby Lily!" - D *He was so happy.*

Feb 29

Bath time, and fuzzy pj's.


Mar 5th

'Cuz somedays you need more than one outfit.



Mar 6th

My niece Rachel. Lily was able to visit Grandma and Grandpa Tolson's home.

Mar 8th



Mar 14

Anyone else have primary at 1:10 am?

Mar 16


Mar 19


I took the kids to an Easter Egg Hunt. It was unique because it was also for disabled kids, like Lily. The kids were able to see kids collect eggs using magnets or other accommodations.

Mar 21, 2016


My sister Pam.

Michael and his missing tooth!



Mar 23rd, 2016


Mar 26

At grandpa Rich's 100th birthday party- Thanksgiving Point.

Mar 27th, 2016

Easter Egg hunt at Grandma and Grandpa Rosenvall's --Also, pictures next to her cousin Taylor. (They are about 2 months apart, Lily is older and smaller!)


Mar 28, 2016


Mar 30


April 1, 2016

Tupperware hats are good for pretending to be Paw Patrol!



April 6th, 2016


Cousin Amber!

Uncle Dan!

Uncle Dan and my cousin Kaylee

Aunt Elese! (Dan's Wife)


April 7th, 2016


April 8th, 2016

Calcifer hiding.

April 10, 2016

Try out the Bumbo.

April 12, 2016


Danny found my witch's wand.

April 14th, 2016


Cousin Jacob,  his wife Cassia, they brought their baby Charles too.

April 16, 2016


April 20, 2016



April 27th, 2016

This little insomniac, I'm beyond tired....

Told myself I would never post a picture of my kids in the bath.... then I had kids.



May 1, 2016


Enjoying a sunset with Lily and the family.

May 3, 2016


Cute little Rainbow Dress


May 4th, 2016



Seahorse/Blue Dress.


May 5th, 2016



May 6th, 2016




May 9th, 2016



May 12, 2016


Cleaning the garage...



May 13, 2016




May 17th, 2016



Helping mommy garden.

Adorable

Lily is adorable everyday.

You can't really see them, but she was wearing seahorse leggings.

This bow is as big as my head.

Lily has been smiling at the angels that surround her. Last night while I was cleaning and Lily was on Andrew's lap, she started cooing and smiling at him. She repeated back his tongue raspberries and flailed her arms happily. We didn't think we'd ever get to experience this behavior from her. It was a tender mercy sent from the Lord, that we didn’t know we needed until we got it.

Happy Easter

Lily and her cousin, they are 2 months apart. 

Enjoy

 Late night insomnia. These first 3 pictures were taken at 2:30 am.

 Grandpa!

When you know you have brothers....

The Dark Side of Heart Failure

I never knew what it was like to experience heart failure.

I've experienced a broken heart-- your chest clinches, you become light headed, vision swirls, breathing becomes difficult and in my case was accompanied by a 3 day fever of 104, multiple tests, an ER visit, and a spinal tap. The doctors attributed my sudden illness to a virus. But my chest has never quite felt the same after that.

My daughter sleeps.

All. Day. Long.

She sleeps.

She doesn't wake for feeds or diapers. She snores, cuddly on the couch. I hold her. I sing to her.

She sleeps.

Midnight arrives and she wakes. Her breathing through her nose sounds obstructed, yet, after multiple nose bulb runs produces nothing. We lay her down and a few moments later she gasps for air, her chest sucking inward. Her body shudders and then she begins to cry.

She cries, until exhausted she sleeps. But her sleeping is not the pleasant sleep of the daytime. The daytime when you cuddle her and rock her and she dozes on silently.

I never knew that heart failure patients suffer from insomnia, but it's actually quite common.

So at night, I watch her. Her shutters, her gasps for air, her cries. She's been prescribed morphine for the pain, pain I know she is feeling. But even with the morphine, she cries at night.

As parents we would do anything for our child. If our child were standing on train tracks and a train began approaching, we would yell, shout, even risk our own lives to move them out of the way.

My daughter is on a train track. The train is approaching. Nearer. Closer. There's nothing I can do, but watch.

Her nighttime sleep is restless. She tries tossing her head, but is too weak. She sleeps then wakes suddenly gasping for breath, unable to fill her lungs, they sound obstructed again. Her eyes roll backwards, she shutters, she screams.

She is in active heart failure.

Do we have another day? A week? A year? Only a second more?

Cherish every moment, good and bad. Hold your loved ones close.