Victoria Ruth’s Last Hours and the Hope of Heaven

This morning our dear Tori met Jesus face to face and was healed.

Last night was my night to sleep upstairs, but I told Brennan, as always, to text or call if he needed anything.

My phone rang at 5:01am and it was Brennan.

As I struggled to wake up I was trying to comprehend why he was calling.

I then realized that something must be wrong with Tori. 

I ran downstairs to find him holding her, her pulse ox was flat lined and beeping, and she was blue. 

She was gone. 

We used his stethoscope to try to find a heart beat but there was none.

Time of death: 5:01am. 

We were not entirely unsurprised but it was still a shock. She had been having some “blue episodes” lately and we had a feeling the disease was progressing quickly. Still, she had been doing so well!

My parents (who were in the basement) heard us crying and came upstairs. My dad took her and held her so we could make calls. He held her skin to skin and she was definitely not breathing. No pulse. 

And then, a sigh. A deep breath followed by silence. And then another. We hooked up her pulse ox again and she was alive

Time of awakening: 5:15am

We cried and held her and praised God for this chance to say goodbye, if that is what needed to happen. 

The hospice nurse came out and assessed her and said she seemed to be doing great. Her numbers were perfect and she was comfortable. We were hopeful that maybe she would bounce back and that we would have her for a few more months.

I took a few pictures of her with my camera and my phone while she was resting, just in case it was my last opportunity.

  
Brennan and I put her in the middle of our bed and cuddled with her. We laid down around 7:45am and all fell asleep.

At 9:01am the pulse ox beeped and I woke up to suction her. Her numbers continued to drop and she didn’t take another breath. Brennan and I told her we love her and said that if she wanted to go to Jesus it was okay. 

Time of death: 9:05am.

God answered our prayers in many ways today: we were both there, we were at home, we got to say goodbye, and she went peacefully. 

She had so many adventures in her almost twenty months of life. She brought so much joy to so many. 

And, most importantly, her life will save lives! We will never stop fighting for Newborn Screening for ALL babies. And, we chose to donate her brain to research to further the knowledge her doctors have of Krabbe so that they can one day find a cure.

Her Celebration of Life will be on April 9th, details to follow. It will be a joyous day filled with love because she is with JESUS in Heaven. She is healed! She doesn’t need oxygen any longer, she doesn’t struggle to swallow, and she isn’t in pain.

Because of our faith in Jesus and what He did this Easter weekend 2,000 years ago, we have the hope that we will only be separated from her for a short while. We  will one day be reunited with her in eternity and she will be WHOLE. She will be able to run around and talk and smile again. 

We love our Tori and miss her more than our words can express. But we are so thankful that we are assured of where she is and that she is HEALED. ❤️

A GoFundMe has been set up to help us pay for any expenses that arise: https://www.gofundme.com/exw54vq4 If you feel led to help in this way, we would appreciate any donation you can give.

A Little Miracle

We received some interesting news today in a voicemail from Dr. Escolar:

She took Tori’s MRI to a neurosurgeon and it was discovered that, even though she does have extra fluid and high pressure in her skull, her brain “spontaneously perforated” and is “shunting itself”(or draining fluid) automatically. 

Tori won’t need to have a shunt placed and Dr. E doesn’t think we need to rush to see a neurosurgeon here. They just want to check her pressures in about two months.

While she didn’t say whether or not we could have actually gone to California without worry, we aren’t dwelling on that. She thought we went and said she hoped and prayed that all went well. 
We are going to choose to look at this as miraculous and focus on this miracle the Lord has done rather than focus or dwell on our disappointment that we likely could have gone to California after all. 
How great is our God! ❤️

Dreams of Healing, Part Seven

Whenever people message us to share dreams they have of Tori being healthy and healed, we save and compile them into blog posts because they are so interesting to us and give us hope. 

You can read all the dream posts here.

We were talking and Tori stood up by herself and then crawled away. I was amazed and said “look what she is doing!” But, you nonchalantly said she did it all the time.

I was carrying Tori flat across my arm. We were walking to a picnic table. Tori didn’t want to lay flat anymore and started to squirm. I put her down and she took off! Running toward the table. And she was FAST! I couldn’t catch her!

We got to the table and sat with a bunch of people. Tori sat up on my knee and messed with stuff on the table. Then she sat with my boyfriend when she got bored of me. It was all so normal, smiling and happy. Then she got back into my arms layed down and fell right asleep. All that running and playing tired her out since she wasn’t used to it. That’s when i woke up. It was so nice to see her play like nothing was different.

I dreamed that we were at church and Tori was sitting on your lap moving her arms all around and moving her head too!

I had a dream about Tori last night. Lesa was going to a women’s conference in the area and she needed someone to watch Tori, so I volunteered.

At first Tori was still sick, but I remember thinking how cute she was in real life (not just in pictures on FB). About an hour in I decided to take some selfies of us together. As soon as I took my phone out and held it up Tori said “screen” and smiled really big for me to take a picture. I thought it was a fluke, so I decided to take a few more. Every time I took a picture she would smile.

A little bit later I decided to take her for a walk outside. As soon as we got outside I set her down on the ground, so she could walk. We went on a trail that went through the town. (At this time she went from her current age to about four or five). She was following along behind me with no problems. She was talking up a storm about her favorite color (purple) and what she wanted to do when she grew up (I can’t remember what it was, but she was excited). We walked back and Lesa came to pick her up.

I dreamed Tori was 5-6 and pretending to be a dog at a (church) picnic. She had pigtails and was running around until Brennan told her it was time to go. Then she just stood up and walked to the car holding his hand. I actually got my phone out to take a picture to send to you, but of course that didn’t work. 😊 Some of the Lingles were there, which was weird. It was a mild, sunny day in a park with lots of trees. Gorgeous, but I couldn’t pick out the place.

Last night I had a dream that my family was visiting with your family. Tori was sitting up on my hip (like you would hold a toddler) and was smiling. She totally was melting everyone’s heart with her sweet disposition.

I had a dream your family came to visit mine. Tori was very happy, healthy, and active. She was still little (like now). But she appeared healed! She was very enthusiastically laughing, smiling, and clapping her hands with so much excitement! She still required some (but very little) medical attention. Little enough, you felt comfortable enough quickly teaching me how to care for her and letting me take her for you so that, mommy and daddy could have some cuddly nap time! (weird enough you and Brennan both were so tired you were passing out as you were speaking! )

Tori Update

Besides the fact that today marks one year since Tori last smiled, there is a great deal for which we are thankful.

Tori has been doing amazingly well since we corrected her sodium levels.

Her breathing has been perfect for a couple of weeks (no apneas!) and we are beginning a trial wean of her oxygen flow to see how she does. Already today, after dropping from 3/4L to 1/2L, she has kept her O2 sats above 95! On her own!

She has been feisty and has gone back to not sleeping, which is not fun, but it is encouraging. 😄

She can hold her head up for a minute at a time. By herself. We assume that can be attributed to her not being on baclofen anymore (about two months now).

She is nice and relaxed, not tense, constantly now.

She is alert and focused.

She has been more talkative than she has in weeks, if not months.

We are incredibly encouraged by how well she is doing. We don’t take anything for granted and we know it can change at any time. 

We don’t know why God continues to allow Tori to do well and to still be with us, but we are unbelievably thankful that He does.

Here are some recent photos of her – mostly of her not sleeping 😉❤️

Thank you for continuing to pray for our Tori! ❤️

    
    
    
   

A Week of Lasts

Most parents reminisce about their child’s firsts – first word, first steps, first everything. It’s exciting to watch our children learn and grow as they explore their new world.

For Brennan and I, it seems that we remember the lasts much more vividly – always in hindsight.

As our Tori loses her previously achieved milestones, we remember. We mourn. 

This coming week, one year ago, was one of lasts, but we didn’t realize it then. 

   

Even now it is hard to pinpoint exactly when she has lost abilities because most of them have happened so gradually that we didn’t even notice; or, we assumed she just wasn’t feeling well one day and therefore was not doing normal things, when in actuality she had lost another ability.

I often wonder if the Lord allowed us to have five perfect months with Tori because of what He knew was going to happen. Five months with a perfect baby; five months of smiles, laughter, and joy; five months of calm before the storm.

This week last year was the last time Tori smiled, laughed, played with her toys, attempted to move on her own, and many other abilities. 

This video is the last one we have of a “healthy” Tori – still happy and able to express herself. Still able to play.

One year ago today. ❤️

  

These were her five month pictures, December 30, 2014.  
 

These are the last two photos we have of her smiling ❤️ It’s a slight smile, but it’s there. January 6, 2015.

 

She rolled over for the first and last time this week last year.

 

And then the number of photos posted daily slows down drastically, indicating that Krabbe came on with full force. 

She stopped being herself so suddenly and we didn’t even realize it at the time.

However, in the midst of the sadness these memories bring, there is also immense joy. 

Every breath she breathes. Every time she opens her beautiful eyes. Every sigh of contentment. 

Every day that we are given with her is precious beyond words and we are filled with gratitude.

We are thankful for her presence. For how she has impacted our lives and the lives of thousands who follow her story. For how she has changed us for the better.

She has taught us to love abundantly, to live fully, to forgive wholeheartedly, and to show grace freely.

We are thankful for our Victoria.

God gave her to us for a reason, and we will love her for the rest of our lives. We love this baby girl even more than we did one year ago – our love is more fierce, more intentional, more compassionate.

She is such a fighter and we can see her continue to try to fight Krabbe with all she has: she is only on one med now instead of three; her visual perception *improved* as of last month. She even held her head up by herself two days ago!  

We don’t know what the future may bring, but we cherish every moment we have with Tori and continue to live life with her to the fullest ❤️ It’s the least we can do for our baby girl.

Dreams of Healing, Part Six

We continue to collect notes and messages about dreams people have had about Tori being healed. There have been so many, and it is the constant prayer of our hearts that they come true. ❤

You can read all the dream posts here.

I dreamed it was almost her 2nd birthday and she was currently starting to put sounds together in an effort to talk. On the morning of her birthday you went in to her as she was waking up and she said “mamma” the moment she saw you. I pray that my dream comes true and that Tori is going to be blessed by God with a miracle to allow her to live to enjoy being a grandmother.

i was babysitting her. and it was morning. she got up and grabbed onto a (tree) that was beside her and pulled herself up and climbed up onto a couch. she was still somewhat sick, but she was really moving and expressional.

Aww. I had a dream about your child last night!!! I was standing on the left side of her, a bit behind her shoulder (wildly enough, much like the angle of this photo) And she not only moved her right arm to take something from me but turned her head toward me and said 3 words. Someone else was there to witness it, the mom, of course was there, but also another woman and not sure who.

I had a dream last night that you were driving with Brennan and the kids and I were in the back. I was rubbing Tori’s legs because I thought they were cold and she smiled a huge smile; just short of laughing. I’ve never dreamed of Tori before and my continual prayer has been that she smiles for you again. I will keep praying for you guys for her to be healed and of course to give you that smile. ❤️

 

I had a dream about Tori last night. I don’t remember much but she was smiling. She must have been about 3 years old, and I think it was like a picture you sent me. She had a big, beautiful, healthy happy smile on her face.

Had a Tori healing dream last night had to share! For some reason she came with me on a Mary Kay conference and you did too but you were vacationing and Tori was hanging with me so I was eating and holding her and she’s all eyeing up my food so without thinking I gave her a taste and she loved it. But then I was so freaked out BC I was like oh my gosh she can’t do that Lesa isn’t going to trust me to watch her I was super upset. So I go to tell you and I remember thinking maybe she won’t b so mad if she brought lots of milk (not sure why that fixes but it’s a dream) and so I reach into this packed bag of Tori’s food and it’s like carrot sticks French fries, like not even mashed up baby food like big food. And you are all casual like yup she eats it all! So I felt better and Tori and I went to a Mary Kay meeting and not sure what you did but we had carrot sticks and French fries! 😉

Last night I had the clearest dream about Tori. It was so real to me that I couldn’t shake it all day.

We were all at an airport, getting ready to board an international flight. I feel like we were going to Israel via Russia (mostly because I’ve been looking at those flights recently). We were waiting on line (a large group of us). The portion of the dream that pertains to Tori is that she was 3 or 4 years old… A toddler and she could speak, but in typical toddler talk. Cutest little squeaky voice. She got the attention of so many people in the terminal because she was wearing a Cinderella dress.

She stayed with me as we were in line to board and you two went to get coffee or some snack.

After getting on the plane, I told you both that I would keep Tori with me so the two of you could sleep. In the dream, you both were sure that she wouldn’t go to sleep right away and since you were so exhausted, I kept her with me in my row. She and I played peekaboo in our seats. It was a pretty fancy plane too. She finally fell asleep on my lap just as you and Brennan were waking up. The flight had two hours to go, and both of you kept saying, “I can’t believe we both slept twelve hours!” Now, I don’t know why a flight would take so long, but it did and you were both very pleased to have slept so well.

I was at your house holding Tori and she kept pushing/kicking me with her arms and legs and then started pinching me (lol, little fighter!). I think I remember telling you that she’s even cuter in person. My mom was also with me, but we didn’t stay long because you guys had a wedding to go to. Lesa, you were really proud to show off your ugly Christmas sweater. Not sure why you’d decided to wear that to the wedding, but hey, whatever makes you happy, Lesa. 😊 It ended with Brennan fixing you breakfast to have for the following day.

I had a dream that I came and visited you guys. We were chatting and catching up. Tori could hold up her head by herself most of the time. We had to catch her from falling off the bed and the high chair because she was moving around so much. She was not completely healed YET, but was making improvements.

Tori was still not completely at full health in my dream, but she was definitely living life – running around in the terminal, acting shy when adults in line would say hello to her, and twirling in her dress. I don’t really know how better to describe it. It doesn’t sound like much, but the feeling it left me with was very powerful. When I woke up, I felt like I literally spent a 48 hour period with three year old Tori.

 

Ten Months Later

  
Tori was admitted to the hospital almost exactly ten months ago for a feeding tube pre-diagnosis. 

That hospital experience was incredibly stressful because we felt like we were in the middle of life or death, waiting for a definitive diagnosis and corresponding treatment – or lack thereof in our case. The time passed so slowly and we never knew how long we would be there.

This stay is much different, a relief in many ways. 

Caring for Tori at home is challenging and exhausting, sleep deprivation aside. Being in the PIMCU means there are plenty of people to care for her, including a respiratory therapist every two hours. We know that she is in the best possible hands.

And yet, despite the relief, we are yet again reminded of her fragility. Of her terminal diagnosis. 

The first night here they asked us about life-saving measures and we had to make decisions about whether to resuscitate or choose DNR given her prognosis should that situation arise. 

Parents should never have to make these decisions for their children.

  
I want to cuddle with her like we do every day at home, but she is so attached to monitors that I went nearly two days without holding her. That was remedied today ❤️

I am sleeping about eight feet away from her, which I haven’t done since diagnosis for a variety of reasons. It feels so far.

And yet, we are still filled with hope and gratitude each step of the way. 

We are so blessed to have an amazing children’s hospital right in our backyard. She truly is in great hands. We have been able to educate so many people about Krabbe during this stay, and that alone is priceless.

We have been so touched by the nurses who have cared for Tori, as well as other staff members (the man who brings the meals has become one of my favorites because of his kind heart and gentle spirit and for how he takes care of me).

And, we are so thankful to still have Tori in our lives. We know time is short, and because of this we treasure each and every moment with her.

Ten months isn’t a long time, but so much has changed and we are thankful for our new perspectives.