This is WHEN I got this

Getting back to my post from a couple days ago. Here is why I took this picture. I was super proud of myself! From the time we got home from the hospital to this day (about a month ago), I was feeling pretty dependent on other people. I needed my Mommy to come live with me. I needed a driver everywhere I went so I could watch Sophia like a hawk. And even with all the help, it was scary. But little by little I became comfortable with machine after machine. I became comfortable knowing what is normal for Sophie, how to help her, and when (and when not) to panic. So here I am, driving Sophia and Max up to Salt Lake, all by myself! (Jason was on a business trip and meeting us up there btw.) It was her first road trip :-) Take a good look at this picture. There is the oxygen tank, the special car seat (actually called a "bed seat"), the pulse oximeter, and the feeding machine. Now the feeding machine I was particularly proud of. At home it hangs on a tall pole, designed just right. The bag has to be hanging 6 inches above the machine in order for it to pump correctly. To get it to work in the car, I took a phone charging cord, tied the bag through the headrest, and stacked the machine on top of a bag of wipes. And that folks, is why I took the picture. I pretty much kicked butt that day. Off we went to Salt Lake and we made it without much trouble at all. That was probably the first time I felt like I really "got this". :-)

Sophia Today...

Bad day with dystonia :-(

Sophie had a pretty hard day :-( until tonight she only slept about 40 min all day :-( she has these uncontrollable jerky movements. It's neurological :-( makes it really hard for her to sleep sometimes :-( I've heard a bunch of different terms for it. I've heard dystonia, chorea, kinesia, athetosis, and encephalopathy. It all pretty much means abnormal movements that she can't control because of abnormal brain function :-( poor girl :-( today I am grateful for a host of numerable people. Professionals, friends and family helping me help her :-) she is sleeping peacefully now and smiling in her sleep :-)

Medically Complex Children's Waiver

Hallelujah for the medically complex children's waiver! I received word yesterday that Sophia has been accepted into the program :-) which basically means that because she is so medically complex, she can be on Medicaid without them taking our income into account! What I'm looking most forward to are the respite hours offered on the waiver! I think it's 13 hours a month that they will send a nurse out to the house to stay with Sophia so we can get relief :-) Hospice has something similar but they are volunteers and not nurse's :-) Nurses make me feel safe :-) Anyways now that she's accepted you can imagine there's endless paperwork because it's state assistance so I'm too busy to post any further tonight :-) You'll have to wait until tomorrow for me to explain the picture from yesterday :-)

Sophia Saying Her Prayers...

 

Road Trip

So far I've only taken one road trip with Sophia. I've had to cancel two. I'm getting ready for another one next week. I'm tired and lazy tonight so I will just post these two pictures from my last road trip. See if you can figure out the significance of the second picture and I will explain tomorrow why that picture was taken in victory!

 

Writing on the windows

I was REALLY nervous when they let me take Sophia home from the hospital. There was so much to remember. So many things I needed to know to take care of her. So many machines I had to be comfortable with. So many tutorials from pharmacy techs, surgeons, and nurses. I had a total anxiety attack the night before we left; when a woman from the medical supplier was trying to teach me how to use the feeding machine. The NICU staff was really good about making sure I was ready, and they were in no way kicking me out. I wanted to leave, but like I said, I was really nervous too. When I got home my wonderful mother and step-dad pulled their trailer into our yard and my mom stayed for several days a week to help me. On their off days my dad, who lives closer, would come over. I couldn't have done it without them. Even with all that help it was entirely overwhelming. The thing that kept me going was the intense love for my dear Sophia and my desire to care for her. Her spot in the house was by the window and the windowsill became crowded with all the things I needed to take care of her. I also wrote all the new things I needed to remember on the window. I wrote a few basics to remember too. Because sometimes when you have to remember to move the pulse oximeter sensor every few hours, clean the surgery site 5 times a day, flush her tube, etc etc etc... you forget the ordinary stuff like changing a diaper ;-) 

One of my friends as she was leaving my house spotted the writing on the window and felt sorry for me..."Oh Jennie!" she exclaimed. I understood what she meant. It was sad all the stuff I had to remember. It meant that my daughter was not well. Now days I am happy to report that I've got this stuff down! I never look at the window anymore, my parents pulled their trailer out of my yard, and I only have to ask my Dad to come help every once in a while. I've got this Sophia thing down :-) :-) :-)

 Sophia today...

 

Contraction Timer

My labor with Sophia was fast and furious. I was at a 6 when I got to the hospital and had her a couple hours later. My contraction timer is still going. Having our last baby and feeling my family is complete, is tied with our wedding and sealing days, for the best day of my life. I think that's why I can't stop the timer. IDK how long the app will run for, but right now it has been 2,786 hours 7 minutes and 45 seconds since my last contraction on the best day of my life.

 

Nearer My God to Thee

When I was eight months pregnant with Sophia I was sorting laundry on the bed. I kept thinking about my Aunt Mary and one of her favorite hymns, "Nearer My God to Thee". For some reason I sang it over and over and over while (Sophie and) I sorted laundry that day. Now I think that song will always remind me of Sophia :-)

Sophia today...

Sophia Yesterday...

 

Sophia's Wall

My 5 year old niece brought me a picture and said, in her sweet innocence, "Umm...I just wanted to give her this picture before she dies." Melted my mommy heart 😌 It got me thinking,... Sarah had drawn Sophie a couple things too, back when she was in the NICU. So I started "Sophia's Wall". If there are any cousins or friends out there who would also like to draw Sophia a picture, please send them! I will paste them on the wall right above her bed so she can see and feel their love 😇

Made a new friend today

I made yet another new friend today. The social worker at the pediatric office got her permission and give me her number. I've been texting her and asking her about her son. I talk about Sophie all day to my friends and family, the social workers and hospice. Someone calls me about some aspect of Sophia every day. And I don't mind because I like to talk about her. But it is also really nice to hear stories about other babies like her. I eat up those stories. I hope these mom's don't mind my questions about their babies because I like to ask them. I feel like they like to talk about them though, so it's a win win I think ;-)

Sophia today...

Painting my toes

Before I have a baby I always paint my toes. Giving birth is not exactly pretty in my opinion. Especially when you do it without drugs....just ask my husband haha! So at least my toes can be pretty 😊 Painting my toes is a fun step because it means I'm getting close to meeting our new child. In preparing to have Sophia I painted my toes an aqua blue.

I haven't been able to repaint them since she was born. I had an emotional block. I couldn't do it. The paint chipped and the nails grew and were cut again and again. Until eventually there was only a couple spots of blue left. I wanted to paint them. I wanted to wear sandals as it got warmer. But I just couldn't bring myself to do it. It was a small reminder of when life was perfect. So I kept choosing close toed shoes.

But life wasn't perfect when I painted them. My baby girl was still sick. I just didn't know it yet. So today I cried as I removed the last of the paint. Then I applied a cheery yellow and picked out my favorite sandals.

I've made up my mind that I will go to the mortuary and paint my angel's toes from the same aqua blue bottle. When it's time. Which I hope is a long long ways away.

Coming Soon....Sophia's Baby Announcement!

It dawned on me the other day that in all the craziness I've forgotten to send out a baby announcement for our dear Sophia! I am working on it now. The hardest part is choosing my favorite pictures! I've taken thousands already!

Also, here are a couple pics of Sophia's "3 month" birthday presents 😁

Sarah got her some cute elephant pj's :-)

Max got her a rubber ducky, because she's getting close to being able to take a real bath! There is an explanation as to why he was naked at her birthday party, but it's so much more fun to let you all wonder....haha ;-)

I didn't get a picture of Michael's. It was a battery powered, clamp on, pink flower fan. He spotted at Wal-Mart and asked if he could get it for her. He wanted her to be cool when she has a fever, or when she's in the hot car. So thoughtful :-) As soon as we got home he asked if he could set it up for her. He didn't want to wait for her birthday party. And he did it all by himself. Got the screwdriver out and everything. He's the sweetest 10 year old boy ever. Almost made me cry watching how much he cares for her.

The "rest" of us got her a very cool, special, bathtub that cradles her just right (since she doesn't always have great muscle tone). She'll be able to lay in the tub and actually get partially immersed in the water! I can't wait, just have to get the go-ahead from the pediatrician about the feeding tube.

Happy Fathers Day

Happy Fathers Day to all of the fathers in our lives, and grandfather's in our children's lives. What would we do without you? We love you all so much.

And a very special Fathers Day Wish to a man who is an amazing father to all of our children and a diligent husband to me. You should all know how amazing Jason has been since Sophia was born. He works very hard and travels providing for our family... does all the shopping and the cooking... stays up late talking to me... and somehow still finds time for each of our children individually. You are my rock. I Love You babe! 😘

Cancelled again...

Last night Jason and I took Sophia and headed to a wedding reception. Our friends the Howe's, their daughter (and one of my favorite young women) was married in the Salt Lake temple last week :-) I'm SO proud of her!

Then... what was supposed to be a pit stop at the lab while we were out ended up costing our whole night.....boo! :-( We need to check Sophia's "levels" because of this seizure medication she's on called phenylbarbitol.  This was her first "check". We stopped by the lab in Hurricane, but they didn't feel comfortable finding a vein because of how young, and chubby she is. So we had to drive in to the into St. George. But not before Sophie left her puke on the floor ;-) At the hospital lab they tried both arms multiple times and ended up pricking her heels and squeezing the blood out. Drop. By. Drop :-( It took an hour. She screamed the whole time. Jason had to run and get her oxygen from the car because she was turning blue around her nose from all the crying. And subsequently she had a terrible time with her dystonia last night (uncontrollable jerky movements, like parkinson's, and gets worse when she's stressed) :-( It was heart-wrenching. The good news though is that her levels are all fine and so we can continue with this medication, which seems to be working. The bad news is she'll need her levels checked regularly :-(

(*side note the lab tech's were super nice and did everything they could for her. It was just a crappy situation for all of us :-(

Then this morning she had a fever :-( IDK if she picked it up from the lab or what but we had to cancel our trip to Navajo Lake. It's a place my parent's took me as a kid. One of those "core memories" places for me. I put it on her bucketlist because I want her to see it. Hopefully we'll get another chance soon. This is the 3rd trip that has had to be cancelled. It's starting to bum me out. But I won't stop trying to show her what I love about this world ;-) It will be nice for all of us to have memories with her, and I think I've said this before, but I personally believe that she'll be able to visit those memories any time she wants on the other side.

Sophia Lately...

She's Ticklish!!!

https://youtu.be/aCNEbE5gCAE

I forgot she was sick :-)

Journal Entry from day 3 after my daughter's terminal diagnosis:

"I just want someone else to deal with this. I want the NICU to take care of her. I want to visit and let them do all the hard work."

Now don't let that scare you. That was just a thought intrusion. A thought intrusion is an intrusive thought that is unwelcome and involuntary. It is not you. They are common in times of great stress. I wrote it down to get it out of my mind. Of course I love her and would do anything for her. I hope if there are any mom's that find themselves in a similar situation... That are reading this blog now or in the future... That you will be forgiving of your thought intrusions and know that they aren't you. Know that just because a thought like that passes through your mind quickly, does not make you a bad mother. Especially if you don't act on such a thought. It's normal to be scared. But you can be brave too!

Fast forward a few months and I am having more good days than bad I would say. Sophia is the light of our life and I enjoy her every day. Just yesterday I was rocking her to sleep and when she was good and still I lay her down. Something I've done with all my babies at one time or another. So it was a familiar feeling. And for just a minute as I lay her down, everything felt so perfect, that I forgot she was even sick :-)

Guess who is going to have her Daddy's eyes? SOPHIA JANE-MARIE! That's right! The sunlight was shining straight into them yesterday and I saw clearly that they are changing color! I tried to capture it in this picture but the shadow of my camera disguised the brown coming in ;-)

 Taking a nap :-)

 

Soaking in my kids/Meeting Auntie Ahna :-)

Sophia Met Auntie Ahna today! My dear sister has FINALLY moved back to Utah from Boise, which was way too far from us! Spent the day with her and Uncle Stephen and Cousin Emmalie today :-)

 Sophia and I arriving-love the feeling of my baby sleeping on my shoulder!!!

 Meeting Auntie Ahna

Cousin Emmalie

And Uncle Stephen

Taking a nap with mom

Singing songs with Uncle Stephen :-)

Max pretending to be a dump truck. Super Adorable! (don't try to play it, it's a screenshot of a video.)

Every day since Sophia was born has been difficult. But I am trying so diligently, in the middle of these hard times, to soak in my kids. Trying to soak in Sophia because she's only going to be here for a short time. Trying to soak in Max because one day he'll be my baby. And Sarah because one day she'll be my only girl. And Michael because he made me a mother and he's growing too fast. Every day I try to look them in their eyes and have a moment to connect with them. Often I wish I could freeze time. Freeze our family just like this. With all of our kids living under our roof. Mason is going off to college in the fall and Jonah on a mission. And then when Sophia is gone Max will be the only one at our house every other weekend and holiday. Jason says we are jumping into the deep end. I have to admit, it's not what I want. But life isn't always fair I guess, and we have to figure out how to be okay with that.

I have this idea of a picture project I want to do with my kids' blue eyes...I'll show you if it turns out.

Tonight Michael found sparklers in the pantry and asked if we could light them and I was like....what the heck....

Sophia Today :-)