Siblings and Spina Bifida

One question that we get a lot is how to Toby's siblings handle having a brother with a disability.
Today I would like to answer that question.

I would like to think that they do really well - at least it seems from my perspective.  Our kids were very blessed to be around Evan so much 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 age - Blue Jacket hockey games, Crew soccer games, even our trip to Disney last year with make a Wish, and 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.  Garrett is 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 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 compare their writing and Caris' handwriting is much neater than Toby's.

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!

Two years ago, I attended the National Spina Bifida Conference, and sat in on a sibling panel.  It was amazing to hear those 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.

I would also predict that at least one of our kids, including Toby, may end up in the medical field with all the medical terms and procedures they know!

Bringing Medically Fragile Baby Home - Oct. 8th SB Awareness

I apologize for missing posting yesterday, but I was blessed to have a dear friend come to visit me  - Jen Potter, who's son has Spina Bifida.  We met online through an SB Yahoo group several years ago - Owen and Toby are about a month apart.  We met in person for the first time when she came to our church for a conference for moms of kids with special needs.  After that we attended the National SB Conference together in Indianapolis, and since then have been able to get together several times. We also share home schooling, which has been wonderful for us!  She's a truly kindred spirit, and we had a great time together the last few days.

I digress - here's today's post:

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 and calling pulmonary for a steroid if his lungs sounded diminished.  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!

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.

October 6th SB Awareness - Toby's Trach and a Big Decision

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 before hospital renovations)

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 wasn't completely unfamiliar because of being around Evan, 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 live on a 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

There's No Way to Explain this....Except God has a Plan! (Oct. 5th - SB Awareness)

Today, I want to share an amazing story that only has one explanation: God.  Over 14 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.

Four months later, Evan was admitted to Nationwide Children's because his diaphragm was paralyzed and pushing up on his lungs.  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 doctors, 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.

During those long three months we planned meals, scheduled hospital sitters for Evan, decorated their house for Christmas, planned house cleanings and a myriad of other things.  During that time God gave me this song by Steven Curtis Chapman called "Carry You to Jesus" - Please click on it here and listen before you continue to read...

Did you listen to it?  It's really important that you do!!

So, I heard this song while Evan was in the hospital and it really spoke to me about how I couldn't understand the pain they were going through; I wanted a way to fix it all for them, and I couldn't. BUT, I could carry them to Jesus.  I could be on my knees for them, and we were and are.  

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.

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.  For four years, I didn't quite understand 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.

Are you ready to have your socks blown off?

One part of that song "Carry You to Jesus" has some lines that goes like this:

"Such a privilege for me to give this gift to you. 
All I'd ever hope you'd give me in return,
Is to know that you;ll be there to do the same for me when the tables turn."  

What?  When the tables turn?  I feel like this song was prophetic!  They did, the tables did turn, and I get chills every time I hear that part.  I shed tears because the tables did turn, and they have been there for us - God created this amazing friendship, and no one can say it was "chance, fate or destiny" - It was and is GOD - We are at the mercy of His higher ways, and I'm so thankful His ways are higher than mine!

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, I think you get the picture!

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 11 this summer? :)

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

October 5th - PICU 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.

Sleep Study, Waiver, and Prayer Request

I have a special prayer request today. It is for our friends Carl & Erika. Erika's brother (Nathan) and sister-in-law (Ivy) had their first baby today - a boy - Bradlin Andreas. He has spina bifida. They will be doing surgery on Friday to close his back and they know that he has at least one clubbed foot, and they are not sure if he has a rectum or not. Please pray for their family. The range of emotions they are experiencing right now can be so overwhelming; pray God gives them peace.

Update on Toby - we heard the results of the sleep study from our pulmonologist. They are very happy with how the ventilator is supporting Toby, so that was good news. I still voiced my concerns over how he didn't seem to sleep as deep as he does at home breathing right with the vent at 12 breathes per minute. According to the study he did go through all the sleep stages, but the doctor was still comfortable with increasing his breathe rate to 16 at night if he desaturates in O2 levels. They will do another study in 6 months. We are also waiting for insurance to approve the monthly synagis or RSV vaccines during this nasty cold/flu/RSV season. RSV is a very bad respiratory virus and because of Toby's condition he should qualify for the shots. Last, but certainly not least - and a HUGE PRAISE to GOD - is that we are keeping the Ohio Home Care Waiver. We actually requested for an additional nursing shift during the week so Bruce can join choir again at church. It has been his ministry for so long and he really needs to be involved again, but I just can't go it alone with all 3 kids weekly, so we asked for it. Insurance denied and then we were able to submit it to Medicaid. It was approved, which means we're actually using our waiver, so we can keep it and the Medicaid card which picks up extra medical expenses!! The only reason why we might need to attend a hearing now is to contest their decision to move Toby to a different type of waiver. It's a complicated explanation, so I won't go into it, but pray that this will also be resolved outside of a hearing. 

October 4th -- Spina Bifida Awareness Month

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 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.