A hard week...

I have tried to update several times this week, but I have literally not had a moment.  Several posts have played through my mind and I haven't been able to get them typed.  Chris lost his father this week and my mom started chemo.  We have been a bit overwhelmed and spread a little too thin.  So this won't be the poetic post I had planned and instead will simply fill you in on the latest.

We have been in the hospital for over two weeks this admission and have been ever so thankful for company!  Friends and family have come to see us.  We were so grateful to see each smiling face.  We have been taken out to eat a few times and brought food a few times and the girls have even been gifted with fun things to do while hanging at the hospital.  We have so very much enjoyed each visitor and treat.

Ty has spent the last week starting new medications to manage his pulmonary hypertension.  We have worked hard to wean him off oxygen as we slowly increase his dose of viagra (Yes, you read that correctly.)  This was supposed to dilate his vessels and relieve the pressure built up headed to the lungs.

It's been a slow process.  We worked our way to almost no oxygen only to add it back.  We added IV diuretics to help him get rid of extra fluid.  We have had some rough days when Ty looked very sick - pale, sweaty, and working so hard to breath and then we have had days when he looked great and was all smiles!  In fact, for the past 4 or 5 days he's been good one day and bad the next, alternating every other day.

We are completely off oxygen and we have anxiously awaited today - Sunday.  Today is the day we would reach our goal dose of the viagra and really see if it was going to help relieve his pulmonary hypertension.  All the ups and downs of the week would be worth it, if by the start of this coming week we saw improvement... and stable sats... and a comfortable Ty.

Saturday evening after visitation at the funeral home with Chris, my friend Anne (who stayed with Ty while Chris and I couldn't be there) called to let me talk to the nurse.  Anne said they had changed the plan and she thought I better check on it.  You can imagine my surprise when the nurse said they had stopped his viagra dose entirely.  I was pretty frustrated because we have been working him up all week and were less than 12 hours away from being at our goal.  So I asked the nurse to have one of the residents call. 

I have to stop here to say that I struggled a lot last week.  I looked to google for hope.  I read up on pediatric pulmonary hypertension and found noting encouraging to speak of.  I tried to give my worries to God... or at least I said I tried.  I prayed, but then I continued to worry.  I let my mind wonder to not so great places.  Places where I wondered what life would be like if we lost our sweet boy.  On the way to the hospital, with K-LOVE (our Christian radio station) cranked up, God laid on my heart that I was looking for hope in the wrong placed.  Why would I go to the internet, or even the doctors for hope, when I could go to the Creator, the Healer, and His Word.  That was a game changer moment for me.  I poured over verses and poured my heart out - out loud - to God.  I gave it all to Him.  Now, I'm not promising in days and weeks to come I won't take my worry back... that's human nature.  I am, however, at least reminded that I can turn around and give it right back to Him.  I have had peace the last couple of days and God has delivered hope in the form of verses and words of encouragement.  He also delivered a new hope in the form of the phone call from the resident last night.

So, back to why they stopped the viagra.  The resident called to explain and offer us a bit of new hope:  The cardiologist on service this weekend came in and looked at Ty and what he has worked on and looked like medically this week.  (All of the cardiologists there are familiar with Ty and his medical history because he has been the topic of cardiac conference 3 out of the last 4 weeks and they have all weighed in (all 20 of them) on possible treatment plans.)  She talked to the attending who has treated him all week and invited him to step back with her and look at the whole picture again.  His echo from this week looks exactly the same as it did upon admission.  We have overloaded him with diuretics and he is still breathing 80 times a minutes.  Her point:  what we are doing, even though we haven't gotten to our goal dose, hasn't made a lick of difference.  We saw minimal improvements on certain days, but stepping back and looking at his trends over the last two weeks - we really haven't made an lasting impact.  So, we take a new approach.  This weekend's cardiology attending specializes in analyzing echocardiograms, so she looked at his most recent echo from a couple days ago and compared it to all his previous echos and his heart cath.  She has a new theory about the way the blood is flowing through his heart and wants to take a closer look during a sedated echo.  If her theory/hunch is correct, Ty may not have pulmonary hypertension.  She has a new idea... a new way of looking.  We are hopeful that this new idea and fresh look at his heart will help us get to the root of what is really going on.  It looks like the coming week will be bringing new tests and hopefully new information.  We have restored hope.

Today Chris will lay his dad to rest.  I didn't have the pleasure of knowing Mr. Hooper for as many years as I would have hoped, but I did know him to be a gentle, kind, and loving man.  He was passionate about his family, history, and his home town of Milton.  He was a great Daddy to Chris and one of the reasons Chris is such a great Daddy to our three littles.  He will be missed.  Please pray for Chris' mom and the entire Hooper family as we all adjust to living without Pap right here with us.  Although we are sad for our own loss, we celebrate that he is in heaven with Jesus - he is pain free, no longer tied to a bed or wheel chair, and he is home.

2 months old

Well, I never dreamed we would celebrate Ty being 2 months old in the hospital, but here we are.  This past week has been full of tests and putting pieces of the puzzle together.  Ty has endured countless sticks, draws, scans, and probes!  He's had xrays, ct scans, scopes, and even a ph probe down his throat for 24 hours!  His NG tube (feeding tube to his tummy) was advanced to NJ (to his intestines) and they stopped all tials by bottle, then his NJ tube was pulled back to NG and we upped his trials by mouth.  It has been a roller coaster.

(starting to coo and "talk" a little)

He, of course, has taken it all in stride.

 (Peek-a-Boo... I LOVE YOU!)

(first real tummy time)

We have added 3 new medications, oxygen, and a new diagnosis to the mix.  It's official.  Ty has pulmonary hypertension.  This can be some scary stuff.  It can have no cause and severely limit your life span and physical abilities or it can cause you to simply take some meds or change your diet and lifestyle.  It can be cause by something else going on - like a heart defect, and may go away when you treat the other cause, or may stay for life.  This has been a really tough one for Chis and I to accept and we are still struggling with the unknown of Ty's situation.

What we do know is that there is a possibility that if we treat some of what we think might be contributing, there is a chance (very very small, but still a chance) that this ugly thing called Pulmonary Hypertension will go away or be "reveresed."  We hare praying like crazy that this is the case because otherwise PH has no cure.

For now, the plan is to possibly send us home some time next week if he is doing well on all of his new medication.  We'll be under close monitoring from his cardiologist as well as his pulmonologist that we have added to the mix.  The goal is still to get to August or September so we can have his second open heart surgery and then see what things look like after that.

(LOVE this little swirl... been there since birth)

In the meantime we have been trying our best to take life one day at a time and enjoy it as much as possible.  We are trying so hard not to worry about the future.  Taking Ty home again is going to be a very scary thing for Chris and I.  Plus, Ava Grace has laser surgery in Cincinatti next week (see tab on sidebar for explanation of this under Ava Grace or PWS birthmark).  Her surgeries are rather routine for us at this point, but it means one of us will be home alone with Ty and the other in Cincinnati with both girls flying solo.  So, it should come as no surprise that we ask again for prayers and lots of them.

 (life in the hospital...)

 (Zoo visits and forts!)

There is nothing we can do but to rely and trust in God.  He has carried us this far and will continue to be our rock.  We have days when the fear creeps in or the "It's not fair" or "why us" drifts across our minds, but for the most part we have been able to give each day to our Heavenly Father and know that no matter what, we are in his hands and he has gone before us.  If it were not for his peace within us, neither of us would be able to function at this point.  Thank you Lord - we praise you for all that you have done, all that you are doing, and everything you have planned for us.

 (We have come to enjoy Pizza Perfect across the street)

(....and the baker around the corner)

(...and ice cream down stairs)

I have to also ask for prayers for my mom.  She begins chemo on Thursday and will do so every other week for 4-6 months before she can have surgery.  My heart aches for her and Daddy and my whole family, but I know that God will bring us peace, comfort, and joy in the morning.

Sing praises to the Lord, O you his saints,
and give thanks to his holy name.
For his anger is but for a moment,
and his favor is for a lifetime.
Weeping may tarry for the night,
but joy comes with the morning.
Psalm 30:4-5

Mystery solved????

They doctors may have solved Ty's mysterious symptoms.  Bless his heart (literally and figuratively).  His BNP level was at 3,000 (normal is under 100).  BNP is an indicator of degree of heart failure.  The problem is, with a BNP that high, he should be one foot in the grave, not grinning and pink as a piglet like he is.  So yesterday we really dug in and started looking harder.  Now they think Ty may have Pulmonary Hypertension.  I know the worst possible reaction to this news is google, but I went there anyway.  The more I look the more desperate the situation appears - like talk of life expectancy and heart/lung transplantation.  I know that is the worst case scenario, but Ty seems to find (and embrace) even the smallest odds.  Only 1% of babies are born in heart disease - way to go baby boy, making sure you are unique for sure.  Our geneticist only found about 56 documented cases of babies with Ty's genetic mutation and make up... I can't even put a percent on the chances of having that it's so small.  Ty nailed it.  So forgive me if, for just a moment, I hang my head in dread when I see the tiny percent chances of #1 an infant even having pulmonary hypertension and #2 the fact that there is no known cure.  I'm speechless and telling myself that God is in control and I need to wait and talk tot he doctors after rounds before I freak out.  If you could, please say an extra prayer or 2 (or 2,000) for us today.  This Mama needs answers and a plan.  

God, please help me be patient and trust you and praise you in midst of the unknown.

And with that, I leave you with another song.  My song for today:

Click here to listen to it or read the lyrics below.  So fitting.

"Praise You In This Storm"

I was sure by now
God You would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say "Amen", and it's still raining

As the thunder rolls
I barely hear Your whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away

[Chorus:]
And I'll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
And every tear I've cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm

I remember when
I stumbled in the wind
You heard my cry to you
And you raised me up again
My strength is almost gone
How can I carry on
If I can't find You

But as the thunder rolls
I barely hear You whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away

[Chorus]

I lift my eyes unto the hills
Where does my help come from?
My help comes from the Lord
The Maker of Heaven and Earth

[Chorus x2]

The unexpected...

I have had to look back at my last post a few times in the last few days to remind myself:

"He'll get us through all of the worsts.  When the worst turns even more worse, He'll still be there.  He still has a plan.  He is good all the time.  He is the best and the only and all we need.  Safe in Him is the best feeling in the world."

On Friday afternoon we found out that my amazing Mom has begun her battle against breast cancer.  I went to bed fighting worry for her and my dad and worry for Ty, not to mention my ever present underlying worry about Chris and the girls and what effect this is having on all of us..  I actually packed a hospital bag before bed... I just had a feeling.  Sure enough, at 3 AM I found myself in the car on the way to Vanderbilt Children's again.  This morning I am blogging bedside - Ty is snoozing beside me in room 3 and I'm thinking about our awesome God and my Mom and baby Ty and this whirlwind we have lived in the past few weeks.

Ty is okay.  He is doing well, as he always does when we are here, and is well taken care of.  He's a mystery we can't quite figure out.  He respiration was too high and sats were too low at home.  He'll have another swallow study tomorrow to see if it is related to eating or aspiration.  In the mean time, we are hanging out for observation.

It is really my mom I wanted to post about this morning.  I have asked so often for constant prayer for my son, and now I come to ask for prayers for my mom.  One thing in life that you truly can't over do or have too much of is prayer.  So I ask you to join me in praying for my mom daily or hourly or however often you think of her or are led to pray for her.

My mom is, quite possibly, the most generous person I have ever known.  She is compassionate.  She is a nurturer and takes care of everyone around her with equal enthusiasm and effort, from her own children to the children she graciously serves as teacher, comforter, and fill-in mom.  She is strong and gives everything 110%.  Mom is the kind of person that goes above and beyond - always.

My mom is also a woman of faith.  It is with a positive attitude and faith in our God that she has received the news that a mass in her breast is malignant.  The lab report was very discouraging, but she has taken it all in stride.  She will meet with her doctor this week to discuss treatment options and we fully intend for God to beat this thing!

For every person that reads this and has (or will) say even one prayer for Ty or for my mom, I thank you from the bottom of my heart.  

This morning I had "Bring the Rain" in my mind.  The chorus played in my head over and over...

Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings You glory
And I know there'll be days
When this life brings me pain
But if that's what it takes to praise You
Jesus, bring the rain

Click here to hear the whole song.  It's my song for today.

The worst feeling in the world...

In the past 48 days I have had a recurring thought.

"This is the worst feeling in the world."

The thought is in response to a different circumstance every time, but it pops up in my thoughts still the same.  But if something is the truly the worst, it can only be once, right?  THE worst.  Implying worse than all the others.  What happens when what you thought was the worst, gets worse?

On March 24, 2015 after Ty had been delivered and taken to the NICU in the late night hours (or early morning hours), I laid in my hospital bed and thought, "This is what it feels like.  This is the worst feeling the world... having your baby and not having your baby in your arms."  The same thought occurred to me many many times over the next 3 days as I was wheeled the long long walk from the adult hospital over to the children's hospital to visit my newborn son in the NICU and then was wheeled back to my room, far removed from him.  "Having your baby and not having your baby is the worst feeling in the world."

I revised my thought on Friday, March 27.  The nurse came in my room and told me I was being discharged.  When someone is discharged from the hospital, it should be a joyous occasion.  I however, was struck with a feeling of panic.  I had to leave.  Ty had to stay.  "This is the worst feeling in the world - leaving my baby behind."   

I kept thinking, now I know.  Now I know what the worst feeling in the world really is.

As the days in the hospital stretched for twenty-four straight, my thought evolved again.  "The worst feeling in the world is having to choose which of your children you will be with."  I struggled with where to be.  Every moment spent at home with Ava Grace with overshadowed by guilt that I wasn't at Ty's bedside.  Every moment spent at Ty's bedside was filled with a sadness that Ava Grace needed her mommy and I wasn't there with her.  "This is most certainly the worst feeling in the world, being forced to choose between your children."

Upon our first discharge I was excited and anxious, but not scared.  I felt prepared, as much as anyone is when they bring home a new baby.  After less than 24 hours, I thought, "I'm afraid of my own son."  This must be the worst feeling in the world.  Every hiccup, sneeze, cough, and nap caused me anxiety.  Was he sleeping too much, crying too hard... he coughed, did he aspirate?  And in about 24 hours time we were back in the ER.  He was okay, I'm not so sure I was.

Two hospitalizations and 3 trips to the ER later, we were slowly getting a routine.  My "worst feeling" thought was finally fading.  Then it happened.

It was a blur, but I was driving my baby, turning blue, in distress.  I was deciding whether or not to drive on or call 911.  I was praying, comforting Ty, driving, and reviewing the steps of infant CPR in my head all at the same time.  In my head I was screaming at the top of my lungs, "this is the worst feeling in the world - I take back all the other times I thought it - this really is the worst."  Every parent fears for their child, maybe even their child's life, but most often it is unfounded or over-reactive.  Really and truly fearing for your child's life and knowing the a negative outcome is a real possibility, THAT is the worst feeling in the world.  Feeling that your child's life is literally in your hands and his survival based on your decisions - that's a bad feeling.  Did I make the right call to take him to the ER myself, or should I have called 911.  He's turning blue, do I keep driving, I'm so close.  What is going to happen.  "Jesus help us" - I said this over and over and over.  Knowing your child's life is in danger is the worst feeling in the world.

As they loaded my sweet boy into Vanderbilt Children's Angel Transport and I continued to pray, we headed down town.  I prayed and prayed and reminded myself that Tyson belonged to God.  God chose Chris and I to parent him here on earth, but ultimately he was God's child.  As I followed that speeding ambulance, my thought came back.  "This is the...." and then my thought changed.  What about the best feeling in the world?  I took a deep breath and felt a new thought settle in.  "God's plan is perfect, God's plan is better than mine."  This is the best feeling in the world.  Knowing that we are held in His hands and that His plans are greater than our own.  My negative thought has been replaced.  "Jesus' love is the best feeling in the world."  He'll get us through all of the worsts.  When the worst turns even more worse, He'll still be there.  He still has a plan.  He is good all the time.  He is the best and the only and all we need.  Safe in Him is the best feeling in the world.

Back at it again...

I have been planning to update, but since my last post we were discharged.  It's easy to update the blog at the hospital while Ty sleeps.  It isn't as easy at home when my spare moments are few and far between and filled with things like laundry and dishes and rest, believe it or not!  So here I am to update... from the hospital... again.

After 6 days of NEC rule out from Ty's bloody stools we were discharged!  That was on Wednesday, the 29th.  We were home for a few days and then on Saturday night, May 2 we headed back to Vandy ER because Ty's monitor kept saying his oxygen saturation was in the 80s.  After labs, xrays, and 3 hours of observation it was determined that he was fine and the monitor wasn't reflecting a true reading and needed to be replaced.  Sunday we just managed and on Monday I called the monitor company and they were supposed to bring a solution on Tuesday.  Tuesday they brought new sensors and that didn't fix the problem, so Tuesday night we turned the monitor off because it was alarming constantly.  Wednesday Ty woke up fussy.  All day he was pretty much either sleeping or crying.  When he cried he would get so worked up he would get sweaty.  Chris and I commented a couple times that he was a little off, but then he would have spells where he was alert and looking around and he slept peacefully.  We had cardiac clinic scheduled on Thursday morning, so figured we would ask then if his formula was upsetting his tummy again.  We thought he looked a little pale, but couldn't decide and kind of thought we were over thinking it.  After all, he had been to the pediatrician the day before and checked out great with sats at 95.

 Outside play time with big sis!

On Wednesday, the new monitor that was supposed to arrive hadn't come by7:30 PM, so we called.  There had been a mix up and we had been taken off the delivery list.  They dispatched someone with the monitor to our house and told us it would be after 9:30.  It was almost 10 when it was delivered.  We went to his crib and attached the sensor to his foot and plugged him in.  (Note:  healthy oxegen saturation is 95-100, when you get to the 80s your cells really aren't getting all the oxygen they need, but it is okay for Ty to dip briefly into the upper 80s and return to lower 90s considering his anatomy.)  We waited for the monitor to boot up and to our horror when it came on, Ty was sating in the 70s!  Chris and I went into action.  I threw on clothes and we loaded him in the carseat.  He actually looked okay, but if the monitor was correct, he was in trouble.  We decided I would drive him to the ER in Gallatin, about 15 minutes away, so that they could get him on oxygen if he really was in the 70s.

I was half way down our road when his cry changed to a scary grunt.  I could tell by the sound that he was having trouble breathing, but we live way out in the sticks and there is no phone service, so I was past the point of no return.  I drove as fast as I safely could to the first well lit stopping point that had cell service.  I jumped out and threw open the van door to look at him and he was turning blue and obviously in distress.  I made a judgement call to continue to the hospital because we were only 5 minutes (or less) away and I figured it'd take an ambulance longer than that to get to us.  I practically ran into the ER and was asked to sign in.  I looked at the nurse behind the receptionist and frantically told her he was sating in the 70s and recovering from open heart surgery, we ran back to an exam room and everyone rushed to to get him out of his seat and hooked up to the monitor... he had fallen into the 60s.  They started oxygen and in just a matter of moments and he immediately began to pink up and look more like himself.  In just those short moments, literally less than 5 minutes, Vanderbilt Angel Transport was on the way to get us!

Chris and I had passed the angel transport ambulance a few weeks ago on our way out of the hospital and I had commented, casually, that I sure hoped we'd never need that... and here we were anxiously awaiting it's arrival.

I have nothing to say, but that Vanderbilt has knocked my socks off and I feel so safe with Ty in their care.  Sumner Regional kept Ty stable and as soon as Vanderbilt got there, they went right to work.  Their were 4 lovely medics and they went to work treating Ty right away.  They gave him an IV, catheter to take labs, and replaced all of Gallatin's gear with mini size (appropriate size) stuff.  Then, they loaded Ty up and off we went.  I've never made such good time from Gallatin to Nashville.  They didn't use lights or sirens, but they were moving for sure!

When we arrived at Vanderbilt Children's, we were admitted straight to the PCICU.  As we exited the elevator on the 5th floor I heard a call go out on the radio, "the cardiac patient has arrived."  By the time we got from the elevator door to our room door there were exactly 13 people waiting.  Some might have called the scene chaotic, but I found it all very soothing and a thing of beauty.  Each person had their role and they all worked in sync to get Ty examined and treated and settled in.  They immediately did an xray at the bedside and determined that he had pneumonia.

Around 3 AM, after Ty had started meds and was stable and settled in, I laid down.  A few short hours later at rounds I was handed quite a surprise.  In just that short time and closer look at Ty, they had decided pneumonia was less likely (he had no other symptoms) and it looked more as if he was in heart failure.  Over the next 24 hours opinions differed on Ty.  Everyone was a bit perplexed.  Some felt heart failure was the answer, others thought pulmonary hypertension.  The problem is that the treatment for each of those issues would complicate the other diagnosis if they were wrong.  It was decided he needed a heart cath for a closer look.

Ty's heart cath procedure went well and confirmed that we are in heart failure.  On 100% oxygen, Ty has 7 times more blood going to his lungs than the rest of his body.  This is less pronounced on room air, but still happening.  There is way too much blood shunting to the right side of his heart through the hole.  It causes his heart to becoming enlarged and for too much pressure and flow to his lungs causing them to get too saturated.  The decision has been made to medically treat the syptoms and try to get Ty fully recovered from open heart surgery #1 and this event and then to go ahead and have open heart surgery #2.

Our surgeon came to speak with me this morning.  He was pulling his own two little girls around with him in a wagon as he checked on his patients.  He told me that with Ty's anatomy, he should have been able to go home and be healthy with his unrepaired AVSD for at least 2 or 3 years.  Unfortunately, he said about once a year they have a baby that reacts as Ty does and needs the repair much much sooner.  If they can get his heart back to a reasonable size and manage his heart failure with medication we will take him home for an estimated 4-6 weeks.  Dr. Mettler said it could be this hospitialization, a few weeks, or (not likely) but a few months.  It all depends on how Ty does with his medication.  The bigger and stronger he gets the better off he will be to go into his second ohs.

So, for now, we are camped out int he PCICU.  He is off his vapotherm and doing well.  We may resume feeding at some point today and work on finding the right balance of medication to make sure his heart and body are in good shape to go up to the 7th floor and, Lord willing, eventually home.  Please continue to pray for our little guy!  We feel so blessed to have him here - he is such a fighter.