A New Kind of Love

Brennan and I have gone through what seems like a lifetime of emotions in the past three months. From such joy and love in seeing our baby grow and learn, to sorrow and grief over her terminal diagnosis.

We are living out our wedding vows in a completely new way – “in sickness and in health.” I never thought about that applying to our children as well.
It is so easy to love a happy, healthy, growing, developing baby. My heart would overflow with joy when she would smile and laugh and babble. It was effortless.
Now, with a terminally-ill baby girl, I am finding that loving her is completely different. It looks different and feels different. My love is now protective, fierce, strong, desperate, deliberate. It is now focused on helping her manage her pain rather than helping her learn new things. It means that I must choose to show love and grace even when she doesn’t let me sleep, she cries often, and I can’t put her down.
In my exhaustion and desperation, in my moments of grief and sorrow, I have to choose to love her and put any feelings of frustration at the situation aside. I have to remember that she is the one in pain, the one whose brain is deteriorating, the one who is losing her sight and other functions. 
And in those moments, I cry out to God and pray for two things: first, that He would completely heal her and show the world His power through her little life; second, that if He chooses to take her home with Him, that she wouldn’t suffer and that He would do it sooner rather than later for her sake.
Brennan and I have talked about the “what ifs” and the possibility of needing to plan a funeral. Of needing to decide upon a burial (but where?), cremation (a thought I can’t handle), or an alternative (did you know that you can have ashes made into diamonds?). We hate talking about these things, but we also don’t want to be making these plans in the midst of our grieving.
We also talked last week about the fact that, even though we desperately want to keep her here, we know without a doubt that Heaven is the best place for her – and any of us! No pain. No sorrow. No sin. No hardship. She would be able to hang out with Jesus and would be there to meet us whenever it is our time to go. 
God has given us such a peace about that possible outcome, as undesirable as it obviously is. He has reassured us that, no matter what, He wants what is best for Victoria. While we can’t see how that outcome will bring good to our lives, we at least see the good in it for her.
And so we continue on this undesired journey, taking it one day at a time, trusting the Lord even when we don’t understand and don’t like what is happening. Our faith has become so much stronger already through these last two months, and I know it will continue to grow. 
We continue to love her and to love each other, and, most of all, we cling to the hope of a complete healing for our baby girl. He is able to do that and so much more!
Tagged ,

A Timeline of Events

For my own benefit and for those who missed the start of Tori’s story, here is a brief timeline of what happened.

Krabbe works very quickly. As we look back, we see more signs of the disease that happened earlier, but we just didn’t know at the time. 

Lesson learned: if your child is not reaching milestones, it doesn’t hurt to ask their doctor. Yes, there are age ranges, but it doesn’t hurt.

December 30, 2014 – Tori turns 5 months old. She still hates tummy time. She starts wanting to eat more frequently.
January 6, 2015 – last picture of Tori smiling is taken.

January 7 - Tori’s demeanor begins to change and she becomes more irritable; she also begins regressing in the areas of talking, smiling, playing with toys, etc. very rapidly. She throws up more frequently. She only wants to be held.

January 14 – appointment with pediatrician where reflux diagnosis is given. All symptoms align with reflux.
January 15 – upper GI X-ray to check on the intestines and bowels. All is clear.
January 21 – day 7 of reflux medicine with no improvement. Lesa calls doctor again. 
January 29 – another visit to pediatrician; fluid in head is suspected, mri scheduled for May 6. Doctor says she is in pain and wonders if it is migraines.
January 30 – Tori turns 6 months old. She doesn’t eat well that day, so pediatrician suggests going to ER at Hershey Med to try to push for an mri. We spend 3.5 hours there and a CT scan is performed. Brain abnormalities are observed.
February 3 – neurosurgeon appointment. He pushes for mri to be done the next day and succeeds. He is concerned about ct scan results and her developmental regression.
February 4 - MRI performed. Neurosurgeon calls that afternoon to give us results.
February 5 – Tori has shots and we show pediatrician the MRI. He tells us  to try to give her coconut milk to get fat into her body because her body is clearly not absorbing fat.
February 6 - meet with neurologist and she tells us that it appears to be a form of Leukodystrophy. Tori does not eat all day, and was dehydrated, so she was admitted to Hershey Med for a feeding tube.
February 6-11 – in the hospital. Tons of tests done, including a swallow study. Test showed that she is aspirating while eating, so the NG tube is going to stay. Blood work is drawn for Tori to determine which leukodystrophy she has.
February 13 – neurologist calls and asks us to come in for results. Krabbe Disease. Our world is turned upside-down. That evening, another Krabbe family puts us in touch with Dr. Escolar in Pittsburgh.
February 16 - Dr. Escolar asks us to come to Pittsburgh to see how far the disease has progressed to see if Tori is a stem-cell transplant candidate. 
February 17-21 – Lesa, Tori, and lesa’s parents take the train to Pittsburgh and back. Many tests are performed and it is determined that Tori is already in stage 3. Not a stem-cell candidate.
February 27 - appointment with pediatric surgery to discuss G-tube surgery and the Nissen procedure, and appointment with the Hummingbird Program to start discussing comfort care and other ways they can support us through this process.
March 2 – Lesa and Brennan decide that it is best for Tori to have both the G-Tube and the Nissen. Surgery is scheduled for March 23.
March 4 - Early Intervention comes to meet Tori and Lesa and to gather information. First evaluation is scheduled.
On March 23, she will have her G-tube and Nissen procedures and we will be in the hospital for at least a couple of days.
Tagged ,

Charleston-bound

This weekend has been planned since October. It was paid for, arranged, and anticipated. Tori and I were going to go to the retreat together, since all the ladies were so excited to meet her.

And then all of this happened.
I didn’t want to come at first. I was ready to cancel so that I could stay home with my baby girl. Since Southwest allows you to cancel without consequence, I was ready.
I kept thinking about how I would be leaving her for three full days. How we don’t know how many full days we have left with her. That alone made me want to just stay home.
But, in his wisdom, Brennan insisted that I go. He offered to take care of her and then my mom offered to stay longer to help him. 
My husband knows how weary and exhausted I am. He knows I haven’t had a break from her for more than a few hours since she was born. And he knows that, emotionally, I just need to get away so that I can be refreshed and ready to take on whatever comes our way.
It is true that we don’t know how many days we have left with her, but as I have prayed and pondered this situation, I have realized that I will never have “enough” time with her. Three days won’t make a difference if God takes her home to be with Him. I  will always want and need more time.
And so, I am on my way to Charleston, to spend the weekend in a beach house with nine other women from all over the eastern United States. By myself. With my camera, ready to capture everything I see. I haven’t used my camera much since she was born, and I have been longing to photograph something (besides her beautiful face). 
Thank you, Brennan, for “making” me go this weekend. We both know I need it. ❤️




Tagged ,

Early Intervention Intake

It has been a quiet week in terms of appointments for Tori – SO wonderful. We haven’t had to subject her to being in the car since last Friday and I know she appreciates that as well. 😄

Several people have come by to pray for Tori and it has been such a blessing. Prayer is powerful and we know that God hears our pleas.

We have been enjoying having my mom here for the past month, but she will return to California on Sunday. Starting next Monday, I am on my own with Tori during the day again. It will be a challenge, but it is our hope that as she adjusts to the medicine and to us gradually putting her down more, that it will be much easier to care for her by myself.





Today was our intake appointment with Early Intervention. I’m already SO happy with the service they provide – and I especially love that they come to our home so that Tori doesn’t have to travel anywhere in the dreaded car seat. 😉

Tori’s official evaluation will be in two weeks. Several specialists will come over and they will also look at the report and recommendations from Dr. Escolar. 

I love that we, the parents, are in charge of what therapies Tori will have. We have the right to say no (though I don’t see why we would at this point), and we have plenty of freedom. They are here to help Tori and to help us help Tori.

During the appointment, the woman told me that there is another Krabbe family nearby, but she obviously couldn’t be specific. I gave her full permission to pass our information onto this family so that we could connect.

I heard from the other family very quickly and they live less than two miles from us. We hope to connect in person very soon, though we obviously wish it were under different circumstances.

Next week she has only one appointment – a follow-up with the G.I. Specialist she saw in the hospital. I have no idea why this appointment is happening, but we will go. 😄 I think it is to evaluate the effectiveness of the MCT oil that we add to the breast milk each feeding to help her body absorb fat.

We continue to be so encouraged and loved by so many and we cannot thank you enough. It makes all of this a little easier.

The future is so uncertain but we serve a God who knows all and He can still heal our baby girl and make her new. That is where our hope is found!

http://www.facebook.com/prayingfortori

Tagged ,

Surgery Date

Short update…

Tori’s g-tube surgery will be on March 23rd in Hershey. She will be in the hospital at least two days, likely more.

We also have decided to go ahead with the Nissen procedure at the same time. We read about it, heard from a couple of Krabbe moms who regretted not doing it at the same time, and watched how many times Tori spit up or threw up this weekend, and we feel that it is the best move to make. We don’t want to have to do this, but it will make her more comfortable.

This also means that we likely won’t come to California until April now.

Only three more weeks of the NG tube 😄

Tagged , ,

Patience and Grace

I have been learning a lot about grace in the past few years – mostly pertaining to how infrequently I offer it in my daily life. The book “Grace” by Max Lucado was eye-opening and I was so challenged by it when I read it a few years ago. 

A practical example? Most of my early driving years were in Southern California. Enough said. 😉 I am much better now in that area.

I have found that patience and grace go hand in hand: for example, being willing to be patient with people is often a form of grace (think Bill Engvall’s “Here’s Your Sign” stories). 

I always try to remember that I usually don’t know the back story behind someone’s behavior or attitude and that helps me to be graceful toward them…usually. Do they deserve my patience and kindness? Yes.

When I became a parent, I was amazed at how naturally patient with Tori I became (I now believe that God gives mothers an extra dose of patience and grace for their babies, especially given the sleep-deprivation that accompanies motherhood). Granted, she was also the perfect baby for the first four months and was rarely fussy or irritable. She didn’t sleep much, but she was at least happy about it.

Throughout the past two months with Tori’s increased/constant irritability, decreased sleeping hours, and the added stress of a terminal diagnosis, I have had to make a conscious decision many times a day to show a new level of patience and grace toward her and the situation. She can’t help how she feels and she doesn’t have any other way of telling me that she is uncomfortable.



I fully admit that the first two weeks of this behavior change were frustrating and I was not very patient. I assumed that the fussiness was simply a growth spurt or something like that, and, given that I haven’t had a full night of sleep in about ten months, its constant presence wore me down quickly. 

However, it is amazing how the word “terminal” can totally transform your attitude in an instant. 

Now, I recognize that a day may come when I would do anything to hear that cry again. To be up all night with her, as sleep-deprived as I would be. To comfort her and hold her. Just one more time.

Edit

I pray that this lesson doesn’t fade away as quickly as it came, because it applies to everyone I meet and not just Tori. We have no idea how many days are left in our lives or the lives of others. We cannot imagine what impact our kindness and patience may have on someone’s hurting heart. 

And so, grace continues to be the primary lesson the Lord is having me learn thus far during this wonderful journey of motherhood. It is often accompanied by the lessons of selflessness, humility, and patience. And I am so thankful for the changed person I am becoming, even though the lessons aren’t easy.

Tagged , , ,

My Heart’s Desire for Tori

Thoughts that cross my mind almost daily…and prayers that I pray moment by moment.

Thank you, Jesus, for the beautiful gift you have given us in Victoria.



Lord, I want to watch her learn to crawl, walk, and talk. I want to watch her learn to enjoy food and how to cook. I want to see her learn how to ride a bike, learn to read, learn everything. I want to nurture her innate talents and gifts and help her discover her passions.

I want to teach her to love music, to teach her to sing and play instruments, and to worship through music. I want her abilities to surpass my own.

I want to see her grow up and become a beautiful young woman. She is so beautiful now – I want to watch her become gorgeous both inside and out.



I want her to become a teenager and all that comes with that. Attitudes, independence, makeup, sleepovers, boys that Brennan will chase away. After all, she isn’t allowed to date until she’s thirty 😉

I want her to see what an amazing, godly, wonderful man her father is and to choose a husband just like him.





I want her to graduate from high school and pursue her dreams – whatever those may be.

I want to teach her to love to travel and explore. To love other cultures and learn from them. To use a camera to capture images that have impact.

Most importantly, I want to see her use her miraculous healing as a powerful testimony to bring the kingdom of God to those who do not yet know You. I want to see her grow in wisdom and grace as she follows You, Lord. 



Oh Lord, we continue to plead with you for a miracle, for a complete restoration of our beloved daughter’s brain and body. You have set the stage perfectly for something magnificent to happen and for thousands of lives to be impacted through the healing of our Tori. Her (many) doctors would be astounded to see her suddenly able to eat normally, to talk and smile again, and to develop as a seven month old should.

Please heal her, Lord Jesus. Allow her to experience all this life has to offer. Allow her to testify of your mighty power for many decades here on earth. 





Please, Lord, allow us to not just be parents, but to be HER parents. To raise her and love her for the rest of our lives. We know that You alone can restore life to her brain and heal her body, and we ask you for this miracle.

EditEdit

Tagged , ,

The Hummingbird Program and the G-Tube

Today we had two appointments: The first was with pediatric surgery to discuss our options for a G-Tube, and the second was with the Hummingbird Program to discuss comfort care. 



We are being forced to make decisions that no parent should ever have to make; and, without God’s miraculous intervention, this is far from the end of those decisions.

I know that Tori is not the first child to need feeding tubes, and I know that the G-Tube will greatly improve her comfort and it will reduce the stress around NG tube feedings when I am by myself with her again. But, these are not decisions that we want to be making. I just want her to be whole again, to be healthy and growing and normal.



I found myself feeling paralyzed in a way as the surgeon discussed our options – keep the NG tube since her life expectancy is so short, have a G-Tube (“Mickey Button”) inserted surgically, or do the G-Tube along with a Nissen (See details here), which is what was recommended by Dr. Escolar, but is also a major surgery.

They offered a great deal of information and asked us to think about it at home and let them know. We decided that we will do the G-Tube but will wait for the Nissen since it can be done later. We will see how she does with just the G-Tube for now.

We then headed over to our Hummingbird Program appointment.



Essentially, the Hummingbird Program is for children who have chronic or terminal illnesses. They provide support to the entire family as well as the child. This was our first meeting with them, and it lasted two hours.

We discussed comfort care for Tori and pain management. We were given a prescription for morphine and Valium to use if she is in terrible pain that the other meds aren’t relieving. 

In that moment, I was forced to re-enter the reality that our daughter is dying. There is a fine line between living in hope for a miracle and living in the reality that our baby girl has a terminal illness…that her life expectancy can likely be counted in months, not years. 

The pain we are experiencing as her parents is palpable at times. My heart hurts like never before. Yesterday we began discussing what we want to do if God chooses to take her home – a discussion we never finished because it was too difficult. No parent should ever have to plan their baby’s funeral.

We are waiting to hear when her surgery will be so that we can plan a trip to California to see my side of the family. 

And we are still praying, along with thousands of others, that God is waiting for the perfect moment to heal her. 

Some of the best Bible moments are the impossible situations that are followed by the words, “but God…” We are praying that this is one of those times.

https://thebrackbills.wordpress.com

Tagged ,

Trusting God

I have been a follower of Jesus for most of my life. I have attended church since I was born and officially became a Christian when I was eight.

During the past 24 years of my walk with God, I have seen Him do amazing things. I have seen Him keep His promises time and time again. I have watched His plans for me unfold and have always been amazed at how things turned out, because there were many times when I could not see what He was doing. I could only see the trees when He could see the forest. I have seen Him work all things together for good (Romans 8:28).

I could list example after example of His work in my life – including the process of bringing me from California to Pennsylvania, where I met the love of my life and started a family. Brennan could do the same. But I won’t do that right now.

Right now, Brennan and I are journeying along an undesirable path, and we are pleading with God daily to change the course. Losing our daughter is absolutely not what we ever saw coming, and our hearts are broken over the prospect of being childless again.

Over two years ago, God changed my heart about being a stay-at-home mom (and about having children in general). You can read about that here and here.

We prayed for Tori for nearly two years as we tried to conceive. We trusted that God would bless us with a child. When we saw the positive test on December 1, 2013, we were ecstatic! We knew (and know) that God had placed parenthood in our hearts and we were so happy to finally begin!

His timing is not our own, and it is perfect. His thoughts are not our thoughts, and His ways are not our ways (Isaiah 55:8-9).

Trust is built over time in any relationship. God has never failed us and we know without a doubt that He loves us.

We trust God and His plan, but that doesn’t mean that we aren’t struggling with any of this.

On one side, we have seen and heard already how Tori’s life is impacting people and how, potentially, God is changing thousands of lives through her. We praise Him for that and are humbled that He would use our family in that way.

But, we also ask why it has to be her. Why us? Why do we have to lose our daughter for these lives to be impacted?

Why doesn’t He heal her and change the world through her testimony? What an amazing display of His power that would be! We believe that He can – and pray that He will – do that. But we just don’t know what He is planning. Right now the trees are looming overhead and our perspective is limited.

It is a moment by moment struggle for us. We have never loved anyone like we love this tiny, precious human. We cannot imagine our lives without her. Yet, we know that God loves her, and us, and that He has an amazing plan for her. And we are choosing hope over despair, because we know that God is sovereign and we trust His plan.

And so we wait. We pray. We trust. We love her and each other. We cherish each moment because we don’t know how many moments remain. And we are thankful for whatever time we are given with our precious Tori.

God is faithful and trustworthy.

Http://www.facebook.com/prayingforTori

Tagged ,

Pittsburgh, Day Three (and the Journey Home)

Friday was the last day of tests for this trip. And it began in the ER again.

IMG_7902

IMG_7904

IMG_7894

When we had the tube reinserted on Wednesday night, my Dad and I noticed that they didn’t measure it – they just did it. We thought that maybe Hershey just did it differently and didn’t question it.

Thursday afternoon, Tori started to be very angry during feeds and sounded very uncomfortable. She then started vomiting a little bit during the feeds – not milk, but this yellow liquid. She also had not gone #2 since before the MRI. We thought it might just be from the anesthesia, so we let her do a few more feeds to be sure, after I consulted a nurse friend.

By Friday morning, she was still crying as if she were in pain during feeds and she was still vomiting a little. So, we left early for the hospital to try to ensure that she would still make her appointments.

Yeah, that didn’t happen. We missed the first one entirely, and were 45 minutes late for the second. There is no such thing as a quick ER visit.

They took her to have an X-ray of her stomach to see where the tube was, and while we waited for the results they took her vitals. When they went to take her temperature rectally, she got SO mad and ended up solving one of the problems! Haha. We were laughing SO hard because so much came out! I know this is TMI…😉 but with babies, you have to watch things like this.

The X-ray showed that the tube was coiled in her stomach, meaning that it was far too long. Amazing how, in just two weeks, Brennan and I have become so knowledgeable about NG tubes. This explained the yellow liquid somehow, but I can’t remember.

So, lucky Tori got to have another tube replacement! Poor baby. They did a second X-ray to confirm placement and we were free to go. She has been fine ever since.

After over 3 hours in the ER, we ran upstairs to her first opthamology appointment where they tested her Visual Evoked Potentials (VEPs).

IMG_7911

IMG_7913

She was so tired that I had to work to keep her awake!

Then, her final appointment of the day was another opthamology one. They dilated her eyes and looked at the anatomy.

IMG_7915

IMG_7918

IMG_7920

We will know the results at some point next week.

We then headed back to the hotel where some friends came to see us and brought me Chipotle for dinner! We had a wonderful visit and we spent time in prayer for Tori.

IMG_7960

IMG_7962

We got up early this morning to catch our train. We are being followed by a huge snow storm so we are very thankful to be in a train, again.

IMG_7996-0

IMG_7967-0

IMG_7977-0

IMG_7969-0

IMG_7980-0

IMG_8003

IMG_8035

IMG_8042

IMG_8037

IMG_8038

IMG_8034

IMG_8036

IMG_8039

IMG_8041

We were amazed to find out yesterday that country star Rodney Atkins had tweeted about Tori! A friend of ours grew up with him and he shared Tori’s story with Rodney. We hope this will help raise awareness of Krabbe and help the fight for newborn screening across the nation.

IMG_7983

We will soon be reunited with Brennan and we can’t wait!

Next week, Tori will see a geneticist, a G.I. doctor, possibly Early Intervention, and I think that is it. I also have a podiatrist appointment. It will be another busy week, but we will at least be home.

We will return to Pittsburgh in late May for an evaluation and follow up testing. Brennan will be able to make the trip with us this time, thankfully! Please pray that her brain will be healed by the time we go back – what a testament to God’s power that would be to even more medical professionals!

http://www.facebook.com/prayingforTori

Tagged ,
Follow

Get every new post delivered to your Inbox.

Join 2,595 other followers