Every Step of the Way...17 Days Until the Race

Milestones

After Joshua led the nation of Israel across the Jordan River, God commanded one man from each tribe to take one stone from the Jordan and pile them up where they stayed that night.  Joshua 4:6-7 says, "that this may be a sign among you.  When your children ask in time to come, 'What do those stones mean to you?' then you shall tell them that the waters of the Jordan were cut off before the ark of the covenant of the Lord. When it passed over the Jordan the waters of the Jordan were cut off.  So these stones shall be to the people of Israel a memorial forever."

In the same way, God has taught me to take the time to "remember all the times He's told us loud and clear - I am with you and I'm for you!"...to remember His promises.  During the times of doubt and darkness, we can look back and remember the times He has carried us through.  Even looking back to those dark days in the PICU, I forgot how bad it was - how many times we almost lost him.

Music has always been really important to me.  Some of you may not know, but I play the piano; I began taking lessons at the age of 12 and continued through most of high school and a bit of college.  I played for our church growing up, and after I quit teaching elementary school after Conor was born, I taught piano lessons until we learned of Toby's diagnosis.  God has always spoken to me through music, and for each mountain I've encountered throughout my life, God has given me verses from the Bible and a song or two to encourage my heart and carry me through.  Stephen Curtis Chapman has always been one of my favorite; I've been listening to him since junior high school.  In fact, before the days of songlyrics.com and the Internet, I used to sit and play the songs over and over to write the lyrics down (if I didn't have the cassette jacket). His latest CD just came out this week and already the first song is speaking loads into my heart, especially right now as I blog about the milestones and God's grace and faithfulness.  Here are the words.  I don't think it's on youtube right now - but I would highly encourage to buy this song or the whole CD from itunes.

Glorious Unfolding
Lay your head down tonight
Take a rest from the fight,
Don't try to figure it out;
Just listen to what I'm whispering to your heart

(The first verse especially speaks to me because I'm always trying to figure things out with Toby)

'Cuz I know this is not anything like you thought (this is certainly true)
The story of your life was gonna be...
And it feels like the end has started closing on you.
But it's just not true.
There's so much of this story that's still yet to unfold

Chorus:
And this is going to be a glorious unfolding!
Just you wait and see, and you will be amazed.
You just got to believe, the story is so far from over
So, on hold on to every promise God has made to us
And watch this Glorious Unfolding!

God's plan from the start for this world and your heart
Has been to show His glory and His grace
Forever revealing the depth and the beauty of His unfailing love
And the story has only begun!

Chorus:
And this is going to be a glorious unfolding!
Just you wait and see, and you will be amazed.
You just got to believe, the story is so far from over
So, on hold on to every promise God has made to us (this is what it means to remember)
And watch this Glorious Unfolding!

We were made to run the fields of forever
Singing songs to our Savior and King
So let us remember this life we're living is just the beginning of the beginning!

Of this glorious unfolding
We will watch and see, and we will be amazed!
We just keep on belieivng the story is so far from over.
And hold on to every promise God has made to us
We'll see the glorious unfolding!

As I was listening to this in the van today shedding many tears, I knew God wanted me to share this with you - I also realized that God has already given us just a small glimpse of His glorious unfolding.  We have been able to remember His promises and see His glory unfolding through Toby's life already - even this side of heaven...to see purpose in suffering.  I am so grateful for that.

Today I will talk about a few of Toby's milestones.
His first several years were full of doctor's appointments, therapy, bladder infections, G/J tube replacements in Interventional Radiology, sleep studies, CT scans, bladder testing, ventilator checks, blood gases, urine cultures, x-rays, an EKG, loads of antibiotics and blood tests!!  He also had a lot of digestive and belly distension issues.  This is something that would be an overwhelming problem for 6+ years until he got his cecostomy (this past July 2013).  He had barium swallow studies, upper GI scopes, and even a rectal biopsy testing for Hirschsprung's disease.

When Toby was around 6-7 months old, he finally began to smile - and he hasn't stopped since.  His smile completely lights up a room.  One of my nicknames for him has been "Sunshine" because even on our darkest days, all I have to do it look at his smile and it makes the clouds go away - truly...just look at these pictures:

This was one of his very first smiles!

He loved to fall back on pillows; even  now he loves to go fast and be twirled around; he loves roller coasters.

I can't help but laugh out loud at these pictures.

At first, it felt like Toby was always behind.  He didn't like therapy very much...well you can tell by these photos what he thought about it at first:

Oh my goodness, just look at that face!

Learning to sit up on his own.

 He often had his pacifier in his mouth because he cried all through therapy!

Starting to like therapy; this was before those ZipZac chairs - Help Me Grow therapists brought this out to help him get used to wheeling himself around.

One thing that really bothered me was that he couldn't eat by mouth.  Eating is more than just, well, eating...it can be a social event too.  After being around other mommies of kids with special needs that were similar to Toby's, we began to learn different things.  We heard about Cincinatti Children's Hospital amazing Aerodigestive Team. It's a team of doctors made up of ENT, Pulmonary, GI (Gastro intestinal), plus nurse practitioners, speech and occupational therapists, nurses, etc. that collaborate together to help kids with complex airway and digestive issues.  Toby definitely fit the bill on that one.  So, we made plans to go down there.

At 15 months of age, Toby had a huge list of testing down at Cincy Children's.  It included a FEES test, Upper GI (checking reflux), x-rays, a Bronchoscopy, and an overnight Impedence Probe to look at reflux also.  The biggest findings were Toby had a lot of airway issues - trachealmalacia, bronchialmalacia - basically a floppy airway.  They also said he had a short trachea, but the best news of all was that Toby was SAFELY SWALLOWING by mouth and could start eating.  We started with just tastes of baby food, and then it led to eating a teaspoon, tablespoon, etc.

On the left was the photo I took after three days in Cincy.  In the middle are his feeding tubes.  The white one is the feeding tube going into his small intestine with formula.  The green one was coming from his stomach, and it meant he had safely swallowed the green bananas.  They colored them green so we would know if he was aspirating or not because we would suction green out of his trach.  On the right was a few weeks later - trying it out at home.  Those are also green bananas!  Maybe that's why his favorite color is green!

This is what Toby thought of the therapist feeding him, but he gradually progressed to the far right...then this:

Feeding himself for the first time.

Today - eating pancakes!

Another thing they thought they found in Cincinnati was a bowel malrotation, where basically the intestine is twisted around and can possibly cause a bowel obstruction or even death.  They suggested he needed surgery to fix it.  After a lot of back and forth between Cincy and Columbus, we decided to come back to NCH and talk to our own surgeon about it.  She wasn't so sure he had the malrotation.  She and the radiologist here in Columbus, both thought that it just appeared that way on tests because of the way the J-tube was going into the small intestine. We decided to go ahead with an exploratory surgery anyway, and in the mean time Dr. C (who is now retired) decided to do a nissin, so we could treat Toby's reflux and possibly get rid of needing the J-tube altogether.  In surgery they in fact found that he had NO malrotation, BUT one positive that came out of this was Toby could now have food into his stomach instead of his small intestine.  This meant less time hooked up to the feeding pump - he eventually graduated to just at night, eating baby food during the day, and about 3 years ago got rid of the pump altogether when he began to eat enough pureed food by mouth all the time.

Nissin Surgery; oh my sweet boy.

This was when Garrett said that "they cracked Toby open."

Toby still has a ways to go with his eating; he's still eating mostly a pureed diet, but every day he gets better and better.  He has finally stopped asking for his two favorite baby food jars - Beechnut Ham, Pineapple, Apples, and Rice and Cinnamon Raisin Granola.  We are so thankful that we can look back and see God's glorious grace unfolding in Toby's life - the beauty from the ashes.

Every Step of the Way...18 Days Until the Race

It's hard to believe that the race is 18 days away.  This will be my third half-marathon, and Bruce's first. After 13 years of marriage, he's finally running with me again.  Every year I finish and think I'll take a break next year and give my body a rest.  About one week after every race, I am ready to do it all over again.  I run because it is a great way to release stress - pumping out those miles under the rush of adrenaline. It's a time to pray and regroup.  Last, but not least I run for Toby - because he can't.

Some of you may not know, but I actually have the opportunity to share our story quite frequently during the year.  I belong to a group at Nationwide Children's called Family as Faculty.  We are parents sharing our stories to hospital employees about what Family Centered Care looks like.  Our three main goals are to show: kids are kids all the time even when they are sick; kids are a part of families with interests and lives outside of the hospital; and the BEST care of kids comes through a collaborative effort between patients, families and their caregivers.  At the end of our presentations we open it up for questions.  We tell our audiences that here is the one chance they have to ask us any questions, to get the family's perspective.  This last time, I spoke to a group of nursing students, and it was a really great group.  I had tons of questions - some of them were pretty difficult.  One question recently (and I get this one a lot) is how do Toby's siblings handle everything.  Today's blog will answer that question - through a lot of photos!

I would like to think that they do really well - at least it seems like it from the inside.  Our kids were very blessed to be around Evan so much that when Toby came home with all of his equipment, they were sort of "used to it."  It wasn't a big surprise to them.

This is a set of my favorite pictures of Conor and Toby together.  I think Toby was trying to get his glasses!

One part of my personality, whether a blessing or curse, is needing justice and fairness in my life and the lives of those around me.  I try to keep things equal for the kids.  I know that at times this is dangerous and very impractical, so God is teaching me that everything in life isn't fair (obviously - we are living that out), but also that we need to teach/correct/instruct/rebuke our kids based on their personalities and learning styles.  I'm learning (focus on learning) to show my love to them according to their love language.  I'm also learning how to home school according to their learning needs.  HOWEVER, one advantage to this, is we try very hard not to allow Toby's hospital stays to interfere too much with their own events - like sports or birthday parties, etc.  We try to allow them to have their own interests/lives outside of Toby.  In a gentle way, we also point out to them the many things they can be grateful for.  They have experienced many fun and exciting events because of Toby.  They have had opportunities beyond anything most kids experience at their ages - Blue Jackets games, Crew games, events with A Kid Again, being on the television show - Tanked, etc.  So, even though some days can be really tough as Toby's sibling, some days are really fun too!

Each of the kids has a unique relationship with Toby.   Conor is his protector and a bit bossy, which lately has been a good thing.  He's been the one sibling who can motivate Toby to eat his solid food at every meal. He's good at thinking of ways Toby can participate (he's also good at this with his friend Evan).  When he first came home, he loved holding Toby - would read to him, and wanted to always be with him.

When Toby came home, Garrett was so little, so he didn't care too much about holding him, but that later changed.  He is our empathetic, bleeding heart. One time when Toby had surgery, and they came to visit he said, "They crack Toby open" and  "It's not fair."  He wanted Toby to come home from the hospital, and he was 3 1/2.  One time, Toby was crying during a trach tie change (those white ties that keep his trach in his neck), and he thought we were hurting him.  He said, "The nurse made me mad!"  He's also my kid that runs from the room with a queasy stomach if too many secretions come flying out of Toby's trach.  He's also the one that I think the instability of those first few months really affected him the most.  He turned 2 when Toby was in the hospital, and I think emotionally it caused too much instability.  I really have to work hard to communicate with him all that is happening when Toby goes in the hospital, so he doesn't fear the unknown.
Just a few months ago, I had to sit down and explain what Spina Bifida is, why Toby has a trach, a feeding tube, and a ventilator.  I just assumed he knew, but he was too small to remember when Toby came home with all that equipment.  I have to remember NOT to assume anything when it comes to Garrett - he has to talk things out.

Caris is Toby's playmate.  She is pretty mature for her age, and Toby is immature in some ways, so it makes it a perfect fit for them to play together.  She likes to pretend, and I can see how developmentally she has really helped him a long.  Sometimes, I laugh and cry when I'm quizzing Toby on letters, shapes or colors and she knows them before Toby!

When Toby saw Caris at birth, it was love at first sight.  We were so nervous about it because prior to this Toby was afraid of babies and toddlers...but his little sister was a completely different story.

Toby used to HATE having pictures taken with his siblings.  He would cry and cry.  I also laugh looking at the middle photo because Toby looks as if he's ready to rip out his g-tube!

Last summer, I attended the National Spina Bifida Conference, and sat in on a sibling panel.  It was amazing to hear these teenagers' stories.  They opened the panel up for questions, and you could tell that each of these brothers and sisters were so thankful for their sibling with Spina Bifida.  It had taught them so much - most of all to give to others and how to be unselfish.  Hearing their perspective caused the tears to flow; it was a very emotional session, but also helpful to hear their perspective, and I pray that when my kids are grown, they will also be thankful for each other - and for Toby, and what God has taught them through him in their lives.

Every Step of the Way...19 Days

Here is the link to give to the Nationwide Children's Columbus Marathon and Half-Marathon.

October is Spina Bifida Awareness Month.  It's one reason why I started the count down to share our journey.  A way to honor God for His faithfulness, to highlight how Nationwide Children's Hospital has been a home base for his care, and to educate others about Spina Bifida.  It's not a hopeless diagnosis - it can be full of valleys and rough spots, but we are changed for the better because it has touched our lives.

Finally, after spending almost 4 weeks on the step-down floor.  Toby was ready to come home.  Basically, we had a crash course in nursing and respiratory therapy in a few short weeks.  One of our favorite floor nurses and respiratory therapists came with us - Rita and Johnny.  They taught us everything we know. Johnny has since retired, but Rita still works at NCH, and I am always guaranteed a wonderful supportive hug when I see her.  We love her, and she loves Toby.  Toby came home in his own personal chariot - ambulance transport!

Oh my goodness, we were scared to death bringing Toby home.  We were beginning a new normal that not only included all of his medical equipment: ventilator, oxygen, suction machines, feeding pump, nebulizer, concentrator, and ambu bags, it also included all the supplies that go with those items.  Another part of this  was adjusting to having strangers in our home: private duty nurses, physical, occupational and speech therapy, respiratory therapists, nursing supervisors, case workers from the county, and the list goes on and on.  They were there to help us care of him, but the chaos and lack of privacy really got to me at times.

Just a little picture of our home set up.

Our second night home, sleeping on Daddy.

The first nurse Toby had during day-shifts was truly sent from God.  She had experience with respiratory issues from her children being premature, and that really helped with Toby.  God truly used her to keep him out of the hospital that first year.  He was sick many times with urinary tract infections, respiratory infections, but not once was he hospitalized for any type of respiratory illness.  Somehow, we always managed to take care of it at home.  She was proactive with breathing treatments, calling pulmonary for a steroid if his lungs sounded diminished, and just a few short weeks after he came home.  She started putting him on his tummy within a few weeks of being released from the hospital, so he could strengthen his head, neck, shoulder, and tummy muscles.  He hated it!

Within just a few days of Toby being home, he got sick.  Bruce and I were also living on very little sleep as we didn't have much night nursing at first.  It took some time for us to get into a routine, but the boys loved their little brother right away. One day when Toby's alarms were going off Conor said, "It's okay, Mom, the nurse will get it!"

A passage of scripture that I have clung to over and over, and I know I've shared it before on this blog, but it begs repeating is Psalm 40:1-3

"I waited patiently for the LORD; And He inclined to me and heard my cry.  He drew me up out of the pit of destruction, out of the miry clay, And He set my feet upon a rock making my footsteps firm.  He put a new song in my mouth, a song of praise to our God; Many will see and fear and will trust in the LORD."

There have been many times that we have had to wait patiently to see how God was working.  While Toby was in the PICU, we were in a pit of destruction - the miry clay...sinking in sadness and despair, wondering if Toby would make it to his next breath.  He has drawn us up out of that pit many times - setting our feet upon the rock, and giving us a new song.  This song is different than before - changed - because we are different, we have changed.  I'm so thankful we have that new song to praise God for his faithfulness.  I always say - every morning God's grace and mercy pours out on my heart, so I can face a new day and take those firm steps of faith, that no matter what will come - He will be with us - every step of the way.

Every Step of the Way....20 Days

I apologize for not getting this post out earlier today.  We had a long day of home school, dinner, soccer practice, etc.  In fact, my mind was so distracted this evening, instead of making rice for dinner - I boiled wheat berries (I grind my own flour) - burned them once, and then a second time boiled them correctly, only to realize that wasn't rice.  Oh well; Bruce said he prefers noodles anyway.

Toby was doing fairly well with his trach, but he would still have really long pauses in his breathing, especially when he was asleep:

He also got really puffy, and they had to put him on lasix to get rid of his extra fluids.

On February 12th, Toby had his fifth surgery in six weeks.  This time it was for a feeding tube or g-tube. We were really hoping he could be fed into his stomach, but...just when we thought things were becoming stable, curve ball after curve ball was thrown our way.  The night after g-tube surgery, he coded again around 2:00 a.m. - turned blue and gave his Grandma Holt quite a scare.  We still aren't sure what happened, but I rushed to the hospital right away, and they put him back on ventilator support.  A few days later, after a bolus (large amount) of milk into his g-tube, he began to act strangely - lethargic.  Fearful he had aspirated or had an infection, they ordered a bunch of labs, blood cultures, etc.  Only to discover his IV was gone, and after trying five times to put an IV in, they settled on a tiny one in his head.  This would hold them over until he could go back under for a PICC line.

Sometimes when you are living day in and day out in the ICU - you start to lose all sense of reality, and that was definitely the case for us. I just wanted some sense of normalcy - whatever "normal" might be.  God was continually asking me, "Do you trust me?"  "You know I trust you, Lord."  But, I certainly felt like Thomas, "I believe, please help my unbelief."  Josh Wilson released a song last year called "They Just Believe" that goes perfectly with that passage of scripture, and describes how we have often felt on this journey.  You can find it here.

At this point, the PICU doctors began to plan that Toby would be on a trach mask (see middle and right photos above) when he was awake, and just need the ventilator while sleeping.  On February 20th, Toby was FINALLY stable enough to move out of the ICU and to the step-down pulmonary floor.  We were ecstatic.  He had been in the PICU around a month, and it felt wonderful to have a room with a bathroom in it - and windows.  Oh yes, what are those?  (This was in the old hospital)

This is one of my absolute favorite photos of Toby in the hospital. After many weeks of holding onto life by a thread, he began to do normal baby things, like sit in his bouncy seat.

Then, one of the hardest realities hit us square in the face.  After reviewing Toby's entire medical history thus far and his sleep study, the doctors felt that Toby needed to go home on a ventilator 24/7.  It's not something we were completely unfamiliar with because of being around Evan so much, but it was definitely not what we hoped for.  They said even when he was awake and breathing, his breaths weren't deep enough, and this put him at great risk for pneumonia.  What happened if he got sick?  He would end up right back in the hospital. When, the pulmonary fellow broke the news that day; I sat there and cried.  One thing that I have learned on this journey is when you are raising a child with special needs you are constantly on the grief continuum.  In the beginning when you first learn the news you are in denial and angry...then the full force of grief hits - mourning the changes in your life, mourning what your child has lost.  After awhile, healing comes and there's acceptance and you learn a new type of normal.  Then, you have those days when something changes, perhaps it's a surgery or another diagnosis.  Perhaps it's just watching all the other kids at the playground run around and play when your child can only watch - and the grief slaps you in the face again.  I have learned not to fight this cycle, but to roll with it.  I have learned that grieving through our circumstances brings healing and yes even joy.  I've also learned that when I hold it all inside, and I don't grieve - it will come back and bite me in the bum (as my kids like to say) and the littlest thing will send me sobbing to my room.

It's always interesting for me to see this picture of Toby - his little tiny body and that heavy ventilator tubing.  

Toby loved his pacifier very much!  He also loved sleeping with his arm out or over his head.

Finally, we began to make plans to bring our medically fragile bundle of joy home.  God was every faithful - with us every step of the way.  One Sunday morning, Bruce and I were able to attend church together and the choir sang this song:  "Bow the Knee"  I'll end today's post with the words (Click on song to hear it):
May the journey we are on encourage you to draw closer to God; He is all we need...He has been guiding us every step of the way.

Bow the Knee

There are moments on our journey following the Lord
where God illumines every step we take
There are times when circumstances make perfect sense to us as we try to understand each move He makes When the path grows dim and our questions have no answers turn to him

Chorus
Bow the Knee
Trust the heart of your Father
When the answer goes beyond what you can see
Bow the Knee
Lift your eyes towards Heaven
and believe the One who holds eternity
and when you don't understand, the purpose of His plan
in the presence of the king, Bow the Knee

Verse 2
There are days when clouds surround us and the rain begins to fall
the cold and lonely winds wont cease to blow
And there seems to be no reason for the suffering we feel
We are tempted to believe God does not know 
when the storms arise, don't forget we live by faith and not by sight

Every Step of the Way...21 Days

Today, I want to share an amazing story that only has one explanation: God.  Over 13 years ago, Bruce and I began a friendship with an engaged couple named Erika and Carl.  We met through our church's singles group - though none of us were single for very long.  In August of 2000, Bruce and I were married.  The following year in May of 2001 - Erika and Carl were married.  We would spend weekends double dating, playing miniature golf, picking apples, watching our guys cook dinner and week nights watching the Amazing Race together! A few years later in May of 2002 - we spent a week together in Hawaii.  It was a dream trip, and we had a lot of fun!

That fall, Erika and I discovered that we were both expecting, three weeks apart.  I was due July 13th, and she was due August 1st.  We were so excited to share our pregnancy, and kept Wendy's in business that summer, as we were often craving hamburgers...(I hope she doesn't kill me for posting these pictures! I also apologize for the picture quality; they're old and were scanned from my scrapbooks.)

Hmmm...who's bigger?  I was always larger!

My due date, July 13th came and went, and the 14th, 15th, 16th....Finally, my doctor scheduled an induction on the morning of July 25th.  On July 24th, Erika, Krysty (another dear friend of ours), and myself were scheduled to go out for lunch, but then the phone rang.  It was Erika. She had been having some difficulties during her pregnancy, nothing major, but the doctors were ready to induce that day.  I was so upset.  I called Bruce and my mom crying; it didn't seem fair that I had waited 11 days past my due date, and Erika was going to have her baby a week early - and before me! (boo - hoo).

At 10:16 p.m., Evan David Weise was born weighing 5 lbs. 13 oz.  Almost at that exact moment, I began having contractions.  By 1:30 a.m. we were at Riverside hospital - in the waiting room, no less...waiting for a delivery room to come available.  Carl and Bruce were sitting on either side of me having a conversation while I was deep breathing through my contractions.  "Don't mind me, I'm just in LABOR!"  

15 hours and 59 minutes after Evan was born, Benjamin Conor Holt came into the world - July 25th - at 2:15 p.m., weighing 6 lbs. 11 oz.

Evan is on the left and Conor is on the right (Do not ask me why his face and mouth are so red!)

I'm actually holding Evan in this photo, and Erika is holding Conor.

We had no idea that four months later, Evan would be admitted because his diaphragm was paralyzed and pushing up on his lungs or that he would spend the next three months at Children's puzzling the doctors, because he couldn't breathe on his own.  He had every genetic test, biopsy, etc. known to the doctors performed, and still no one could explain what he had or why.  He also had surgery for a trach, feeding tube, and went home ventilator dependent.

We had no idea that four years later, Erika and other friends (Krysty and Jamele) would be meal planning, scheduling hospital sitters for Toby; just like we had done when Evan was in the hospital.

We had no idea that she would be there for me walking through my house before Toby came home from the hospital - helping me make a list of all we would need to convert his nursery into a hospital room at home.  I found this list a few months ago, and it made me cry.

We had no idea that 7 years later, we would plan, host, speak for and execute a conference for mothers of kids with special needs, or start a small support group for mothers of medically fragile kids.

We also had no idea that our second sons - Garrett and Andy (hers) would be born 3 months apart and be absolutely the best of friends.

It can be difficult some times to relate to people who are walking different paths than you are - it's hard to understand when you haven't walked in someone's shoes.  But, Erika has.  I didn't quite understand for four years what she had gone through with Evan, until Toby was born and everything happened.  I remember calling her saying, "I'm so sorry I ever said that to you, I had no idea; I get it now!"  We have laughed together, cried together and prayed together.

She's not the only one, either. God has blessed me with an amazing support network of other moms who truly "get it".  I'm so thankful for Jen, Cassie, Heather, Tracy, Hannah, Marne, Alissa, Becky, Jenn, Theresa, Sarah, Suzi, Danika, Allison, Krista, Sylvia, Kayla, Andrea, Carol, Kim, Melissa, Donna, Megan, Mary Evelyn, Katie,Mitzi, Stefani, Renee and Sonya.  I apologize if I forgot to list someone - it's late and I ran 10 miles this morning - forgive me? (I wrote this post Saturday night - late)

God's plans are so much bigger than our own.  It's wonderful when He allows us to see just a glimpse of His purposes, to be able to look back and experience that hindsight of,  "Oh, that's why you allowed that to happen."  I'm so thankful that He sees the past, present, and future, and that He orchestrates every tiny detail for His grace and glory.  We experience hard times to be able to comfort others with the comfort we have been comforted with, and to encourage each other.  So, do I think God was just waiting to pour out the most awful things in our lives that I dreaded might happen when I was pregnant with Toby?

No, He was waiting to pour out His gifts of grace, mercy and His blessings.  It wasn't how I pictured His blessings being packaged - It ended up being better!

By the way...here area few photos of our boys together:

The boys were just over a year old here...

 Did I mention that they both turned 10 this summer? :)

From left to right: My Garrett, Conor, and then Erika's Evan and Andy

Every Step of the Way...22 Days

When Toby was in the PICU; it felt like we were riding a roller coaster. One day he would be weaned down to just a teeny tiny bit of oxygen, and then the next day it was turned back up and he was on CPAP because he coded on us.  They finally did another MRI - this required intubation because he went under anesthesia

The MRI didn't really show much, but then a few days later, Toby began to get very agitated.  Nothing was soothing him, not even the "sweeties".  Basically, this child got addicted to the little containers of the glucose water.  They use this on boys when they are circumcised, and before other procedures to give them an adrenaline rush, so they won't feel the pain as much.  We were constantly dipping Toby's pacifier in this stuff to soothe him.

After this, neurosurgery tapped his shunt to see if his irritability was due to the shunt not working.  It wasn't, and January 25th, he had his 3rd surgery to replace the shunt.  The shunt surgery was successful, and Toby improved some.  The doctors thought he was doing so well he could be moved out of the PICU to the step-down neurology floor.  He was still needing just a low level of oxygen to keep his saturation levels up.  The next step was to see if his airway issues had resolved, and a sleep study to look at his apnea.  We already knew he had apnea, not sure if it was obstructive (airway related) or central (brain).

In this photo, he still had his PICC line in, they ended up removing it that weekend, but then three days later - he coded on the floor, and was immediately moved back into the PICU.  His stridor began to worsen, the scopes by ENT showed no change in his vocal cords,  he was severely retracting when he breathed, and he wasn't gaining any weight because all of his calories were being used up to stay alive.  At this point, the neurosurgeon was saying he didn't need a Chiari decompression.  This is where they take bone out in the neck to create room around those nerves that control breathing, swallowing, etc.  They said he had good CSF flow from the MRI's/CT scans, and really didn't see a reason to do it.  Then, the tough decisions began. Bruce said that the attending PICU doctor came in one day and said, "Enough is enough; we need to put in a trach."  In a few short days, on February 7th, Toby had tracheotomy surgery; his fourth.  It was devastating to realize that we would no longer hear Toby's voice - not his cries, coos, or even speech.  

So, you may be wondering where Conor and Garrett were all this time?  For the first few weeks they went back to Michigan to spend time with my parents.  Then, they came back for a little while.  Aunt Shauna (my sister) came for a period of time, and my grandparents. Everyone was helping out.  Our church took care of our meals; and we had around the clock "sitters" scheduled to be with Toby (from our church), even at night so he was never alone.

I love Toby's eyes in these pictures.  They are so expressive.

My parents are on the left, my sister Shauna, and on the right is Heather - a dear friend who also happens to have Spina Bifida.  I've know her since she was 9 years old.

Bruce's parents holding Toby while out of the PICU.  During this time Lon Nell (Bruce's mom) lost her mom.  It was a really rough time for all of us.

These are my grandparents.  They are holding Toby back in the PICU right before his trach.

So, do you remember when I started this a few days ago, I mentioned how I prayed that Toby wouldn't have: stridor, weak cry, difficulty breathing, central apnea, feeding and swallowing disorders, reflux, and failure to thrive.  All of the above happened.  So, what is my conclusion on that?  Do I think that God said, "Oh, well - you prayed that none of that would happen, so here you go - let's see how you deal with this!"  Not at all.  I believe that God allowed it to happen for His greater purpose.  I think He allowed me to be aware that that long list might happen to prepare my heart.  I can look back and see how I may not have relied on Him completely had Toby just had regular "Spina Bifida."  I also have an amazing story to share about my friend Erika (husband Carl) and their son Evan.  That will come tomorrow.

Every Step of the Way...23 Days

When I committed to doing a blog every day for 25 days, I think I should have thought it through a bit more!! I haven't written this much in....well...ever.
23 more days until the race.  

If you would like to donate on Toby's behalf, click here

The next step in our journey with Toby began on the evening of January 14th.  While I was nursing that day, I began to notice that something wasn't right.  I suspected he may have reflux.  He had projectile vomited a few times, and a lot more milk was coming out than going in.  I wasn't panicking just yet because I had a similar issue with Garrett.  I had so much milk that he couldn't eat on both sides or he would vomit it all back up; his tummy was too full.  I tried to slow things down with Toby too, and then that evening I called my friend Sonya.   She's a dear friend from college, a nurse, and one of her boys had severe reflux, I knew she would give me good advice.  The biggest fear in the back of my mind was shunt failure because a major symptom of that is projectile vomiting.  That night things got worse, and Toby started to make this awful sound when he was breathing called stridor.  In the middle of the night milk was coming out of his nose.  by the next morning his breathing was really fast.

When we had left the hospital eleven days prior to this, our case worker handed me a huge binder with different doctors' names and phone numbers. It contained a variety of different information related to Spina Bifida: orthopedics, physical medicine, urology, developmental pediatrician, and neurosurgery.  I felt overwhelmed that morning because I had no idea which doctor's office to call.  What area did this fall under?I called a friend who is a pediatric nurse practitioner, and she had me do a respiration count, and then said, "he needs to go to the ER."  I don't know why I didn't think of that.  She came over to stay with the boys, while Bruce and I headed to the ER.

We were admitted later that day to the Infectious Disease floor because the ER doctors suspected RSV.  I knew they were wrong, but I didn't speak up; no one in our house was sick, even with a cold.  In the back of my mind I kept going back to what I had read - that this was a symptom of his Chiari II Malformation. Chiari II is named after a man named Arnold Chiari.  During brain development when a baby has hydrocephalus, certain pieces and parts of the brain - specifically the cerebellum end up being a different shape, size, and cause it to be displaced into the brain stem.  Your brain stem is where the vagus nerve is located, which controls breathing, swallowing, etc.

Within a few days, Toby failed a swallow study - he was aspirating his food into his lungs, so they put in a nasal gastrointestinal feeding tube placed (through his nose), and once again I was back to pumping.  His oxygen was low, so he was hooked up to oxygen through a nasal cannula. They also ruled out any shunt issues at this point, but he cried often.  It was just awful - I can remember being so frustrated that I couldn't feed him.  One night he was just miserable, and I was there holding him in a rocking chair with my back to the door, he just wanted to nurse.  I was so angry, and I can remember a PCA (Patient Care Assistant) opening up the door to ask, "Mom, are you feeding him.?"  My reply was, "No, but I want to."  What was so frustrating is that I hadn't been there for the swallow study.  It wasn't supposed to be for a few more days; I had gone home to get rest, and then they had a cancellation.  Just the day before, an occupational therapist had evaluated me nursing him to see if the swallowing was positional; her conclusion was he could continue nursing.

Then, ENT came up and put a camera through his nose to look at his upper airway.  His vocal cords were paralyzed, and neurosurgery ordered an MRI to see if he would need a Chiari decompression.

On Thursday, he had an MRI.  They didn't get any decent pictures because he was retracting too much when he was breathing.  I can remember carrying him back up to the floor from radiology, and he was completely limp in my arms.  The PCA came in to do vitals and his blood pressure was 140/80; temperature in the low 96's.  "Something is really wrong," I told her, "I'm really worried."  Toby had been a very strong newborn; we would have to lay him on his side to change his diaper because of the open hole in his back, and he would roll over on me.  He was that strong!  Now, he was limp - I just remember his arms/legs hanging down past my arms.  One of the residents called an ICU doctor to come up.  She is an older cardiac doctor that has been there forever - Dr. Kraenen.  She took one look at him and said, "Get him in the PICU right now!"

Then, it was the "Running of the Bulls" (as my friend Allison calls it).  Blood tests were being ordered, people were rushing in, and I was falling apart.  Dr. Kraenen gave me a side hug and said, "It's going to be okay, he's going to be okay."  The major reason for his limp unresponsiveness and crazy vitals was his sodium had dropped to 108.  They put him on an IV drip of saline, scheduled for a PICC line for antibiotics, and then an EEG to make sure he wasn't having seizures.  Normal sodium levels are between 135-145...anything below that and you run the risk of seizures.

The mask was just awful; it never stayed on right.  It was also really strange because one eye was always cracked open a bit; it sort of creeped me out.

Once he was in the ICU hooked up to the sensitive monitors, we started to see the apnea episodes.  When you look at this screen below you can see:
HR (in green) - 112
BP (in purple) - 75/32
Temperature (in purple/Celsius) - 35.6
Respirations (in white) - 8
Oxygen (in blue) - 100

We would have to rub his arm to get him to keep breathing.  The doctors would then try to wean him off of CPAP, and he would code - turn blue, oxygen and heart rate dropping.  That happened so many times I lost count.

By this time, his sodium was staying level.  He finally was maintaining his own body temperature (prior to this he needed warming lights, etc.), and his thyroid tests came back normal.  They were trying to figure out why his sodium dropped.  They also wanted another MRI to see if he had any damage to his brain from the low sodium.

As I was driving back and forth from home to the hospital I was listening to a CD by Stephen Curtis Chapman.  The song called "Believe Me Now" really spoke to my heart during this time:

I watch you looking out across the raging water
So sure your only hope lies on the other side

You hear the enemy that's closing in around you
And I know that you don't have the strength to fightBut do you have the faith to stand

And believe me now, believe me here
Remember all the times I've told you loud and clearI am with you and I am for you

So believe me now, believe me now

I am the one who waved my hand and split the ocean
I am the one who spoke the words and raised the dead
I've loved you long before I set the world in motionI know all the fears you're feeling now

But do you remember who I am?

Will you believe me now, believe me here
Remember all the times I've told you loud and clear
I am with you and I am for you

So believe me now, believe it's true
I never have, I never will abandon you
And the God that I have always been
I will forever be, so believe me now

I am the God who never wastes a single hurt that you endure
My words are true and all my promises are sure

So believe me now, oh believe me now

So believe me now, believe me hereRemember all the times I've told you loud and clear

I am with you and I am for you

So believe me now, believe it's true
I never have I never will abandon you
And the God that I have always been
I will forever be, so believe me now
Believe me now, believe me now

God was asking me to trust Him.  He was telling me that He was with us, that He would always be God no matter what happened with Toby.  He promised that He wouldn't waste this hurt we were going through; that I needed to believe.  I have clung to this song over and over through the years.  Even now, listening to it my eyes fill with tears.  One day at a time; He taught me to take things one day at a time.  He holds the future, and He can return to the earth at any moment to take us to heaven...then all that worry would have been for nothing.  I needed to trust Him one moment at a time because HE IS TRUSTWORTHY.