One Year Ago Today

One year ago today we lost her. Today we took Max to Bryce and did some beautiful hikes. We brought back some rocks to put around both girls' trees in the backyard. When we got to Bryce though, I got really sad. The first place we stopped was called rainbow point. I immediately recognized where I was because I went there with my family as a girl. I think I was about Max's age. But I had forgotten until today. The memory of being there before was strong. It was a beautiful day and I was young and free and full of hope and joy. For a moment I yearned to be that girl again. And I allowed myself a few tears for my daughter, before pulling up my bootstraps and hiking all day with Jason and Max. Max said it was the best day 💜. It was. We hiked, we ate, we played catch in a field. We thought about Sophia. It was a lovely day.

Sophia's last bath, March 26th 2025

A Logistical Day In The Life Of Sophia

The first year that Sophia was born, a friend was at my house. She noticed that I had started writing a list on the window. All the extra things I needed to remember, on top of having a new baby at home. She sighed and exclaimed sadly "Oh, Jennie". She saw me 💗. Fast forward 7 years and that list would look like child's play to me now.

Then after Sophia was a couple years old I had met a few adult children like her and their parents. It seemed like they never got out of the house and I was determined that would not be us. 

It's kind of us. 

Sophie's nurse said something the other day that really changed my paradigm. She noticed that having a baby is hard, but the good part is the older they get, the more independent they get, therefore the easier it gets. But with Sophe it's the opposite. The bigger she gets, the infinitely more complicated she gets plus the harder she is to move around.

I felt seen again by my nurse. When it feels really hard, well that's because it really is. 

This is Sophie's schedule today. It can vary a little, there's a couple nebs we could add or take away depending on how she is. But this is pretty much it from now on. 

Typed up and put in a binder titled "How to take care of Sophia.":

Sophia's Daily Meds and Interventions

*Goal volume is 800mls. Rate is running at 45mls/hr. When she gets to 800 (and not before, over is better than under) switch to water and increase the rate to 60mls/hr. Switch to milk and clear the timer at 8am

*Flush each syringe after each med to get all those flakes in!

*Change site gauze every diaper change. If there's a rash put on a mix of triamcinolone and nystatin with a qtip.

*Vent g tube every hour and move any stomach content into the j tube. If more than 15mls hold feed for 10 mins.

*Every time I give meds, rinse syringes and cut and start new ones soaking.

**whenever I have time in between all of this, try to do as many "fun things" for Sophia as I can. Like...putting her in the living room; painting her nails; take a bath; blow bubbles; read her a book; snuggle; watch a show; play with toys; give her a massage. BARE minimum is one fun thing, plus going outside once a day (sit on the porch, lay on the grass, go for a walk; swing in the hammock)**

Upon Waking (don't let her sleep in past 8am)

Take bi-pap off and put nasal cannula on

Soak rinse and dry neb cups

Switch back to milk, change the feed rate to 45mls/hr

Change her diaper and site guaze

Weigh her

Work on constipation

Put her leg brace on left leg and move pulse ox to the right

shaker vest and cough assist treatment

stimulate a cough and suction

8am

levetiracetam (1/2 tab)

topiramate (1/2 tab)

hold feed for 10 mins

a bolus of miralax: mix 30mls of water with 1 cap miralax. attach to her med port and push in 10mls every 10 minutes, once empty wait 10 minutes and resume feed

9am

Move leg brace to the right leg and pulse ox to the left

2 puffs pro-air

Take nasal cannula off and hook oxygen to bipap

Put chinstrap on

put bipap on

1 vial sodium chloride at the same time as a shaker vest treatment

take bipap and chinstrap off

cough assist treatment

put nasal cannula on

suction nose with saline and bbg

11:00am

clonazepam (1.75 tabs)

baclofen (1/4 tab)

levetiracetam (1/2 tab)

another tab of senna if she hasn't pooped yet

hold feed for 30 minutes

move leg brace to left leg and pulse ox to right

take nasal cannula off, hook oxygen to bipap

change diaper and site guaze

put chinstrap and bipap on

wrap her up to go to sleep

1 vial of budesonide

2:00pm (wake her if asleep)

Brush her teeth

move leg brace to right leg and pulse ox to left

change diaper and site guaze

a bolus of miralax if she hasn't pooped yet

2puffs pro-air

1 vial of sodium chloride WITH a shaker vest treatment

take bipap and chinstrap off

cough assist treatment

put nasal cannula on

stimulate a cough

3:30 pm

levetiracetam (1/2 tab)

glycopyrrolate (1tab)

topiramate (1/2 tab)

hold feed for 10 minutes

4:30 pm

omeprazole (1 tablet) IN THE G-TUBE (this is the only med that goes in the g). Use 20mls of flush with this one only because the g-tube isn't used for feedings.

hold feed for 30 minutes

move leg brace to left leg and pulse ox to right

6:00pm

move leg brace to right leg and pulse ox to left

2puffs pro-air

take nasal cannula off and hook oxygen to bipap

put chinstrap and bipap on

1 vial of sodium chloride WITH a shaker vest

take chinstrap and bipap off

cough assist

put nasal cannula on

suction nose with bbg

7:30 pm

take leg brace off and put hand braces on. Move pulse ox to left.

change diaper and site guaze

pheno (1.5 tabs)

clonazepam (1.75 tabs)

baclofen (1/4 tab)

cyproheptadine (1/4 tab)

levetiracetam (1/2 tab)

take nasal cannula off and hook oxygen to bipap, put chinstrap and bipap on (don't use chinstrap if I don't have a nurse)

pulmozyme (1 vial)

hold feed for 30 minutes

9:30pm

pheno (1 tab)

topiramate (1/2 tab)

hold feed for 10 minutes

12am

pheno (1 tab)

levetiracetam (1/2 tab)

hold feed for 10 minutes

3:30 am

clonazepam (1.75 tabs)

glycopyrrolate (1 tab)

baclofen (1/4 tab)

4:30am

levetiracetam (1/2 tab)

topiramate (1/2 tab)

hold feed for 10 minutes

1 vial pulmozyme

5am

cyproheptadine (1/4 tab)

senna (1 tab)

hold feed for 10 minutes

1 vial of albuterol

1 vial of sodium chloride

So, this is just what I (or Jason, or the nurses) have to do to keep her alive/healthy. This daily schedule does not of course mention washing SO much laundry with multiple outfit and bedding changes from blowouts and reflux; sometimes constant suctioning; unscheduled meds for additional problems that arise; bathing; researching and proposing treatment options; addressing medical emergencies (which are becoming more frequent); finding my own supplies for things insurance won't cover; checking my support group for ideas (and to help others where I can); taking her to school occasionally and all that that entails (school has procedures too); keeping her room organized; unpacking boxes of supplies that show up; cleaning her equipment (suction canister.....barf!); swapping tubing and filters; researching equipment on my own when my options are limited by insurance; AND scheduling follow up appointments up north, making and executing travel plans, TRAVELING with Sophia and all of her machines and equipment!

AND THIS IS ALL WHEN SHE IS HEALTHY

And IF we keep this schedule up really really good, OCCASIONALLY we can take a couple days off (meaning just meds, food and nebulizers) for a (close) vacation, w/o her health sliding back.

NOW. I do have help. Thank goodness. I'm convinced w/o it she would have to be institutionalized😓. I am very lucky to have nursing. Not all families like us do. It is hard to fill the hours because nurses are sometimes hard to find. But atm I'm getting a few days a week of daytime and several nights a week of nighttime. 

And then of course there's my amazing husband who works full time, plus a couple side gigs in the evenings. Who finds time to make dinner, do dishes and laundry, and takes over Sophia's care when I am needed elsewhere.

Of course I cannot relax during that time. Oh no, there is still so much to do. During nursing/husband hours. I need to:

-manage other kids' lives and take care of them (sports, extra curriculars, friends, school projects, birthday parties etc)

-meal planning and shopping

-cleaning

-TRY to take care of the yard 😅

-general to do list

-and of course more Sophie stuff that I can't do while I'm caring for her ... like communicating with ...

    Durable medical equipment suppliers for her 7 machines; disposable medical equipment supplier; incontinent supplier; oxygen supplier (yup these are all different entities); drivers for these suppliers; technicians who come to the house to update/change/or train me on equipment; insurance (oh joy); that wonderful waiver we're on needs a yearly application, monthly report on Sophia, and a bi-monthly in home visit; her individual nurses; home health scheduling; the pharmacy; occupational, physical and speech therapists; her school; hospital discharge teams wanting to follow up; and of course I can't forget the most important...communicating with her 9 doctors offices about intermittent changes to her meds, machines and interventions. Also I cannot forget to relay those changes to home health because the nurses can't administer tylenol or even supplements without a doctors order!

*Currently (post hospital which is always an uptick) I am averaging 6-12 phone calls, emails, or appointments a day with the above list.*

-not to mention things like working out, showering, eating. I almost never get to do the budget, clothes shop for the kids or keep my electronics/emails/pictures organized. Read scriptures? Go to the temple? Pray? I try. I do get to take a nap almost every day. I'll usually pass out mid afternoon for a little while. My favorite part of the day is when the littles (Sophia and Max) are in bed and I get to watch TV with Jason and the teenagers (Michael and Sarah).

THANK GOODNESS FOR:

💘A husband who has literally never told me no when I need a break. Even though when she's choking (which is all the time) it reminds him of losing his daughter. I honestly don't know how he does that. I love him so much.

💘A plethora of humans who help me keep her alive. From her neurologist, to her nurses, to the pencil pushers, to the maids who sanitize her room in the hospital. I'm so grateful for all of these people.

💘Good family and friends who "see me" and let me lean on them. Who talk to me and get to know my inner thoughts. People who graciously accept that any plans we have (even big ones) could be cancelled last minute. Or that only one of us will show up 😉 Who are understanding when I forget to check on them and give me grace when I look scattered, or drift off into my own thoughts. And of course, there's our perfect little Southern Utah town, where the neighbors are always willing to help us in a pinch 😺

I will end with a portion of a quote from Elder Holland that a dear friend recently sent to me:

"A true Christian cannot follow the Master only in those matters with which he or she agrees. We follow Him everywhere, including, if necessary, into arenas filled with tears and trouble, where sometimes we may stand very much alone. I know people, in and out of the Church, who are following Christ just that faithfully. I know children with severe physical disabilities, and I know the parents who care for them. I see all of them working sometimes to the point of total exhaustion, seeking strength, safety, and a few moments of joy that come no other way" (he goes on to talk about other types of severe trials)

That last part really hits my heart. "seeking ... a few moments of joy that come no other way". It's like Holland really sees me. It's so true. If we didn't do ALL of this (with all of this help), we would miss out on her smiles, her coo's, that face she makes during therapy when she's really concentrating and so proud of herself, her sweet snuggles, and her belly laugh. Oh how I LOVE her belly laugh. One belly laugh could get me through a month of all this 💞 There is so much joy in this hard work.

And lastly a link to an amazing talk from a father, with a similar family situation. Sent to me by a friend, in a similar situation (except she has TWO Sophie's!):

What Happens When Life Gets One Degree Colder? - BYU Speeches

Anyways, if I don't see you for a few more years, now you all know why. Highlights from her most recent Primary Children's stay...

In the hospital

Lagoon

Lunch with Mason and Kara

Conference Center

Aviary

4th of July on top of the hospital

Michael won a prize at Lagoon (and gave it to Sophie :-)

Back Home:

Updated Pics of Sophie (since it's been a few years)

p.s. and this is very important: some may read this and want to do more for us. I know it's counter-intuitive but having people over to help can actually mess up Sophie's treatments (b/c I'm social and I'll end up talking to you). So if you're wondering what else you can do, you're already doing it 😉 Just pray for us, and we'll reach out when we need you. In the meantime, THANK YOU to everyone, for just being there 💗💗💗 I'll write again when I can ;-)

I'm Not Rocking Her to Sleep Anymore

She's Okay. Just in case the title made you scared. But I'll get to that.

First, Wow. It's been a long time. 3 years since I've posted. I don't know why really. Maybe I didn't need it anymore. Maybe life became so routine that there was nothing new to say. She hasn't changed a lot, only gotten bigger, heavier, longer. Same beautiful face. 

There's been a few big changes in the last few years. I'll get to those over time. I'm not sure why I had the urge to start blogging again. Maybe it's because she's started school and I want to document what she might learn. Maybe it's because my Mom and StepDad are going on a mission. Maybe life has finally calmed down enough... hahaha... yeah no... that's not it ;-)

The blog I have in me tonight though is about rocking her to sleep. I sleep trained all of my babies. Except Sophia, of course. Until a couple of weeks ago, I have rocked her to sleep every night of her life. I would give her medication, hook her up to various machines, wrap her up and rock her. Once she was out I would transfer her to her bed. Stepping carefully so as not to trip over the cords. It used to take a long time, so I would usually sing a song or two and then turn on the TV. In the Hidden Hills house I even put a bench and extra chairs in the room so the kids could watch TV with me. 

But over the years it has taken less and less time. When we moved into the new house, I didn't see a need for any extra furniture, as it wasn't taking too much time away from the others to put her to bed. But I did think that it would be something that I would do for her whole life, no matter how big she got. And I liked that idea. 

Well it didn't turn out that way, but life is like that sometimes. For several months now she would wake up when I transferred her, which was turning into a problem. So a couple of weeks ago, I decided to try something new. I wrapped her up, held her and sang her two songs. Lay her down, then sat down by myself in the chair and sang "You Are My Sunshine" over and over until she fell asleep. It worked perfectly, she fell asleep beautifully and we didn't have to worry about the transfer. 

So now I sing her to sleep instead. Our rocking days are done. Unless she gets sick, I suspect there would be a fair amount in that case. It makes me a little sad, but... well... that is that. It is what it is. <3

Here's a recent pic of our family since it has been a while. 

Lava Hot Springs

 Tonight I'm grateful for the opportunity to take Sophia to a beautiful hot spring and make a memory. We sat in the water for about 30 minutes and she was very happy. Cooing and smiling. She always looks so relaxed in the water. It's one of those things I'll always remember ❤

#givethanks

My Four Babies

 Tonight, I was sitting around talking with my MIL&SIL's about giving birth. So tonight, I am grateful for my four babies. My girls were natural, I needed epideral's with my boys. But they all made it, safe and happy. And I'm so grateful that my family is complete(ly done)!

#givethanks

Here they are....plus my bonus kids....on my birthday last week :-)

Thanksgiving 2020

 Tonight I'm grateful for a wonderful family in law, for food, and for little things that remind me of a great childhood. For example, tonight I'm sleeping under a cotton blanket with ribbon lining...remember those? ;-)

Night

#givethanks

Cousins on thanksgiving...

The only pictures I took on thanksgiving. I guess I was too busy stuffing my face ;-)

Dang it!

I forgot to post gratefullness yesterday! Ack! It's just SO busy....so MANY things to do to keep everything in this family running smoothly! Well, I guess I will post an extra day so that I still get 7 posts in ;-)

TODAY I am GRATEFUL for sleeping children on the way to Idaho! 

Whoops....guess this one wasn't sleeping lol

I'm grateful for a lot of other things too. And I'm sitting in the car, so I will list them...

I'm grateful for...

-A nice car that fits our family (even if I have to sit in the back bc Sophie gets the good seat ;-)

-Family

-Sophie's machines. Namely the machine that helps her breathe when she forgets, the machine that concentrates oxygen for her, the machine that aerosols medication and delivers it to her lungs, the machine that shakes the mucus in her lungs loose, the machine that helps her cough it up, the machine that sucks it out, the machine that tells me if her heart rate or oxygen drops, and...oh yeah...the machine that feeds her! Each of these special machines keeps our girl comfortable, and alive ❤

-I'm grateful for a lovely house, big enough for each child to have their own room and Jason an office.

-Family

-That my husband lost his job, bc now he works from home!

-Family

-Lots of Friends

-Friends who are like family

-Family

-The Gospel

-The Prophet

-Our Country

-The President and First Lady (yep, I said it! I like Trump!)

-The Scriptures

-Living on a culdesac

-Our cute little animals

-Family

-Therapy

-My adorable and perfect children

-Sophie's smile

-Sophie's wheelchair

-Soccer games

-Cello concerts

-Band concerts

-Patriotic programs

-Mild weather this fall

-Family

-Holidays

-Temples

-Trees

-Cliffs

-Mountains

-That I've ALWAYS had a roof over my head and food in my belly. Like, my whole life, THAT'S pretty great.

-My hard workin man

-That I can watch the sunset behind the mountains, from my living room/kitchen, every night.

-The schooling I've had, and the schooling I plan to continue one day

-Dreams

-Inspiration/The Holy Ghost

-Jesus Christ

-Joseph Smith

-Family

-Did I mention family? ;-) Seriousy, my family associations (immediate and extended) are just about the most important thing to me.

#givethanks

Night Nurses #givethanks

 Tonight I'm grateful for our night nurses. We didn't have one last night, for the first time in a long time. I forgot how much we depend on them! Thank goodness we have full time nursing. It's such a necessary blessing.

Temple Prep

#givethanks 

This must be why I don't blog anymore. The kids are older, life is busier, and it's hard to find the time! But I'm committed not to miss a day!

Tonight I am grateful for my children. Specifically Sarah tonight. We had a temple prep class together at the church. She will be old enough to have a temple reccommend in January. I am grateful Bishop did the class in person. I think we needed that. I am grateful that Sarah was SO excited to go. She was just popping her little hand up and answering all the questions. Even one question that I didn't know. She is developing perfectly and she makes me SO proud. Young Women's here she comes!

 Tonight I am grateful for...

An opportunity to go up to Apple Valley and spend time with friends and family. How I love that place. It will probably always be home...

#givethanks

Also, here's the most recent photo of Sophia. She is doing great ❤

#givethanks

 Our prophet encouraged us to give thanks for the next 7 days on social media. Since I'm not on social media I decided to do it on my blog. Sophia is alive and doing well. Life is really busy. Tonight I'm grateful for my cool 11 year old daughter who likes to watch Gilmore Girls with me and my shiny bedtime face ;-) 

Three Amazing Months

Hey all! Sorry for the drop off there! It was actually for a good reason this time! Sophia's health has been SO good that we have been busy busy getting out and enjoying life! We even took her on a week-long trip to Idaho and then up to Yellowstone! I don't have anything profound or spiritual to say today. Just wanted to catch up. Life is fun. Life is hard. We have our ups and our downs and we are trying to make the best of all of it. 

Some happy developments for Sophia are.....

She has said a couple of words! I know! Can you believe it?! It actually started with "Mom" a while ago, but she only says that when she is really sick and suffering :-( Then the amazing moment this summer when she was trying to get my attention and said "HI" clear as a bell! It was a one time thing, but SO amazing. AND Lately when she is in the right mood... she will repeat "uh-huh"!!!!! It is SO FUN to go back and forth saying "uh-huh" with her!!

Some sad developments are that we are pretty sure she has bronchiectasis. It's a chronic condition because her pneumonia's have caused damage. It basically means she will FOR SURE have a cough for the rest of her life :-( Which we BASICALLY already knew, but it's still difficult, that moment when you know for sure :-( She did get a new machine to help us manage the symptoms. It's called a Shaker Vest and it's pretty cool. Her machine count is up to 8 now. We're grateful that they help us keep her comfortable, and buy us more time with her.

What fun we've been up to...

Manti Pageant...

4th of July in Kanab...

 (4th of July Nails :-)

Sibling Reunion...

My brother Chris came down for the first time in years! :-)

 We took the kids to Sand Hollow on Grandma and Grandpa's boat

 Cousins :-)

My sister Holly and I took our kids swimming at Hurricane Pool

Idaho/Yellowstone Trip...

Said Goodbye Grandma and Grandpa Hayes.

They left on their mission to South America!

 Met up with Jay's siblings at the Henry's Lake Cabin

And took the kids to Yellowstone!

Went to the annual UtahPCH reunion at Nicole's!!! There are 6 PCH kids in this picture.....see if you can find them :-)

Went on a "staycation" at the Marriot in Cedar ;-)

Took the kids out to Navajo Lake (my favorite place to camp as a kid)...

Met some friends at the Veyo Pool for the day...

Took Max to the fair...

Max's first day of Kindergarten...

 (and his first day on the bus)

More random cute pics...

Met a BEAUTIFUL family in Logan with a little girl with similarities to Sophia. Gave Sophia's wheelchair to her as she has grown out of it :-)

 And here's Sophia and I waiting for her appointment to get a NEW wheelchair!!!