Heartfelt Hope for Ty

Heartfelt Hope for Ty
Our son, Tyson Hugh Hooper, was born with coarctation of the aorta and a transitional avsd. These complex heart defects require a minimum of two open hearts surgeries and extended hospital stays. His first open heart surgery repaired his aorta and was on day 9 of life and kept us in the hospital for almost a month. His second surgery will be determined at a later date, but will most likely be around age 2 or 3. Our family covets your prayers for our brave boy and our family as we care for him. Additionally, there is a "donate" button below to use if you feel led to support us financially. We have experienced loss of income due to his extended hospital stay that required time off work. In addition, Ty has and will continue to have mounting medical expenses related to his condition and the care that he requires. We have set our current goal at $15,000 and are more than half way there. Thank you to each and every person who supports us through prayer, giving, or just by loving on our family! We are humbled and blessed by all of the ways the Lord is providing for us and know that he is using Ty and his story to do great things! Our greatest wish is that God be glorified through Ty and the sharing of his story.

Tuesday, May 19, 2015

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

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


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]

Sunday, May 17, 2015

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.

Monday, May 11, 2015

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.

Saturday, May 9, 2015

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.

Saturday, April 25, 2015

1 month old... and back to the hospital

6 days, 3 doctors appointments, 2 on-call-cardiologist phone calls, 1 ER visit and 1 day before his 1 month birthday, our guy threw us for a loop and sent us back to Vanderbilt.  This may be TMI to some, but we are a family of over-sharers (as evidenced by this very blog), so I'll go ahead and tell you it all started with blood in his poop.  He had at least 5 diapers withe the offending poo in them the day before our second pediatrician appointment, so I held off, took pictures of the poo, and asked our pediatrician Thursday.  He ran some labs that came back with elevated white cell counts and low platelet counts and informed us, that as much as he hated to, his gut told him he had to send us to the ER.  So off we went to drop Chris at his car so he could get Ava Grace from school and we parted ways with me headed down town to the emergency room.  I had nothing but a scantily stocked diaper bag and the baby with me and hoped for a quick trip.

 My hopes were dashed almost immediately.  As was the case last time, we received a call ahead and they were waiting when we arrived - that seems to be the case with cardiac kids... VIPs.  They took us straight back avoiding as many germs as possible and within moments, ummm... a couple of hours ER time... we had been seen by no less than 3 doctors and countless nurses and I was getting the impression this wasn't going to be an in-and-out visit.  They drew labs and sent them off and discussed a spinal tap (thankfully we avoided that one) and then cardiology finally broke the news... the dreaded words... the words I knew were coming before they were said... "you are being admitted."  Ugh.  It was at least another 3 hours before they finally had a room ready on the floor.  More labs.  x-rays.  Needle sticks and attempts at an IV a couple of times.  Finally we were carted off to 7A where we were not only recognized by a few nurses and care partners, but placed in our very own room!!  The same room we were discharged from! Ah, home sweet home (sort of)... room 12.

The didn't let Ty eat at all.  His labs came back looking great and they all but cleared him as far as infection was concerned.  After inconclusive x-rays the primary concern became NEC.  You can google it, but basically it's something very serious that is found primarily in preemies and newborns with health conditions, like heart defects.  It has something to do with the intestines becoming inflamed and possibly tearing or rupturing from what I understand.  Anyway, if you have it you can end up in the hospital for weeks and potentially face surgery.  The only way to test for it is observation, labs, and regular xrays.. all on an empty tummy.  So for 27 hours this little dude went without food.  As evidenced above, he protested by not speaking to any of us.

Friday afternoon they cleared him and decided he didn't have NEC and could begin eating again.  I kid you not, about 30 seconds after they turned on his feeding tube his eyes popped open and he was ready to roll!  I think he would have jumped out of the crib and hugged the nurse if he could have!  It was too funny.  This is when I asked about discharge.  The story changed a time or two, but by the time nutrition and cardiology had pow-wowed, they broke the news: "protocol in this situation is to phase feeding back in over several days."  oh boy.  They laid out the schedule - starting with new formula at 20 calories/ounce at a rate of 11 ml an hour working our way back up to 66 ml an hour and then increasing calories back to 27/ounce... and THEN starting bolus feeds (instead of continuous)... and THEN reintroducing the bottle.  Holy Canoli... this was going to be a process.

Turns out that now that his little insides were irritated (as evidenced by the blood) he was at an increased risk for NEC and pushing feeding too fast might make our minor situation a major one.  Most likely his issues were caused by a milk protein allergy (which Ava Grace also had).  So we skipped the trying different formulas and went right to the one that worked for his sister.  In the mean time, now that he is being fed, he is a happy boy and we are camping out at Vanderbilt until Thursday (or at least that is our goal).

We brought a few things from home to make our stay more enjoyable, like Ty's "fish tank" that he loves.  He is currently drifting off to sounds of the ocean.  Mommy is staying with him and Daddy is holding down the fort at home. 

Keeping the girls from feeling overwhelmed, overshadowed, or left out is it's own challenge.  Today Ava Grace had some hang time with Mommy and Daddy together for lunch and then Daddy took her to the Gallatin Square Fest for some bouncy-house-face-painting-balloon-getting fun and then grocery shopping while Mommy headed back to the hospital.

Ty met all his goals today so far.  He has one more ml increase at 2 AM and then tomorrow we'll start increasing calories.  Also on the agenda tomorrow for Ty is a visit from Ava Grace and Lauren!  Lauren will be visiting Ty and then taking Ava Grace for a special afternoon out to eat and to build-a-bear so Mommy and Daddy can have some time together with Ty for a little while.  I think we are all excited for tomorrow to get here!

Thursday, April 23, 2015

The adventures of Ty at home...

Well, it happened.  A week ago today, they decided Ty could safely come home.  I was excited and a tiny bit anxious.  Discharge took a while.  We had to get all of his paperwork in order, meet with the dietitian to get the "recipe" for his higher calorie milk and directions on when and how to increase feeds, get his medications and a lesson on how to give those, and get a crash course on how to "drop an ng tube."  It was a whirlwind of activity and excitement and before I knew it, we were loaded in the car and headed home.

When we got here, my "excited and a tiny bit anxious" quickly turned to "anxious and a tiny bit excited."  As soon as we got home we had to set up to do his first feeding.  I suddenly felt like we had come home with half the hospital as we put together an IV pole, unloaded tubes and bags and monitors and started hooking our little guy back up to wires and tubes.  Freedom was short lived.  To add to my anxiety, I failed to warm his food before I put it in the bag and after his first every at home feeding was complete, he proceeded to spit it ALL back up.  Spit up is a normal baby thing, but not so safe when you have left vocal cord paralysis - freaked mommy out!  Baby Ty didn't seem bothered at all, of course.

(Chicks dig scars... and dimples too!)

We survived our first night at home with very little sleep.  I should say, very little sleep for the grown ups.  All three kids slept great, of course.  I am an eternal optimist, so I have to point out that Ty being on a feeding tube has a silver lining - he gets continuous feeding at night (a constant drip), so he sleeps all night long!  Unfortunately, the pulse ox monitor they had us using was going off every few minutes.  Enter my first call to the on call cardiologist.  He said not to worry - the monitor was going off at 92 (% oxygen saturation is what we are talking) and his goal was actually over 88.  Good.  As long as we stay out of the 80s, we are okay.  Problem: the monitor is VERY loud and obnoxious and sill set to 92.  Hence no sleep.

Saturday the sun came up and I was feeling pretty good.  We were getting in snuggle time and enjoying having our boy home.  He had a little congested sounding cry after his feeding and that had us concerned, but we were being overly observant.  As the day wore on his monitor slowly drove us crazy sounding the alarm and got me thinking maybe I should give him a once over for the "warning signs" we'd been told to watch out for.  I lifted his onsie and to my horror saw that he was "retracting" (pulling in under his lungs when he breathed).  That's a sign of working too hard to breathe.  He also head bobs off and on, also a sign.  Then I got to thinking of the hours-long stretch he had been sleeping.  That's a sign as well, overly tired and sleepy.  I got more and more concerned the more I thought and finally put a call in to the on call cardiologist again.  He didn't sound overly concerned - not a call 911 kind of thing, but asked me to bring him on in for an evaluation.  So, we headed to Vanderbilt Children's ER and they were waiting for us when we got there.

 (After his 24 day stay and only one day home, Ty thought the ER felt like home sweet home, lol)

Turns out, Ty was fine.  Apparently his base line includes half the darn symptoms of respiratory distress.  He is still tachypneic, head bobs off and on, has minor retractions all the time, and well... he's a newborn, so the sleeping all the time is technically normal.  So, we were thanked for coming in, encouraged that we did the right thing, and told to pay close attention to how he looked right then and there and to use that as a base line.  All the same warning signs, but worse than what he was already doing would be a bad thing.  This boy is giving mommy and daddy major gray hairs!  I left wishing I had a medical degree - it's a lot of pressure for a parent with little training to make judgement calls on major and potentially life-threatening stuff like this!  We have monitors, feeding tubes, heck they even sent us home with a stethoscope, but we still feel like we are winging it.  The good news is, they faxed an order to have our monitor changed to alarm at 88, so we could  at least get some sleep!

Sunday dawned a new day.  I would like the record to show that I made it through the entire day without calling the on call physician.  Yay mommy.  I also managed to get both Ty and Ava Grace to sleep at the same time.  Sweet victory.  Sunday was a good day - full of worry, but that seems to be the norm these days.

Monday we went to the pediatrician for his first check up there.  Getting ready was a trip!  We had to load up baby, bag, and the feeding pump and bag of milk.  Oh. My. Word.  Traveling with all these tubes, bags, and machines is no easy task.  That was an adventure.  Ty "ate" in the waiting room while I filled out paperwork.  Then we were called back.  It was a quick evaluation in which they said he looked good, but wanted to see him again Thursday (today, actually) so they could spend more time going over his records and more time with us.  (Shameless plug here - I LOVE our pediatrician.  He is awesome.  William Johnson at TN Pediatrics in Hendersonville.  Take your kids - he's the best.)  When we left the pediatrician's office Ty threw up all over himself, me, and the car seat and COMPLETELY freaked me out.  Later Monday evening he did it again.  Ring, ring - another call to the on call cardiologist.  Spitting up is okay, but not great.  Watch him for changes, "too much," etc... another one of those judgement calls we have to make.

(This boy seriously LOVES his "fish tank" - thank you Hutchings family!)

Tuesday home health came!  This was a pleasant visit, but she observed Ty on his pulse ox monitor and was concerned that he might require oxygen.  Great.  She called the cardiologist.  The alarm was sounding too much.  The cardiologist moved our appointment up.  Long story short, we stressed, he kept dipping into the 80s too often for comfort.  Come to find out much later in the afternoon, it was total user error.  The monitor wasn't on tight enough and he was (and has been for the last couple days) keeping his sats between 94-100!!  Go baby go! Big sigh of relief.

Wednesday... ah, yesterday.  The first day his monitor hasn't gone crazy and we haven't worried ourselves sick.  No calls, no nurses or doctors, just a day at home with our sweet baby boy.  We did all then normal stuff.  Normal (for us) feeds with only 2 very small spit ups, a bath that he didn't seem to hate too much, and home cooked dinner at the table together as a family.  Yesterday helped me know that eventually we will adjust to this.  Eventually we won't worry every time he takes a deep breath, or shallow breath, or sneezes, or looks too sleepy, too awake... too..... anything.  One day we will settle into our new normal.  For now, I'm just trying not to be scared of my own kid.

(4 weeks old!!!)

Today Chris is off taking the girls to school and mom's day out while I hang with Ty.  When he returns we'll load up our guy and all his gear and head back to the pediatrician for our follow up.  After that, we are on our own until home health returns on Tuesday and we follow up with cardiology on Thursday!  Hopefully it will go smooth!  This is an adventure, for sure.  Thank God for his presence in our every moment.  We wouldn't survive without him.

This week's prayer is to heal Ty's heart and speed his recovery.  We would love to see big improvements and hear great news when we head to cardiology clinic next week!  We also ask for prayers for mommy and daddy.  We are both supposed to head back to work after next week.  Not sure how we'll manage all of this and work too, but we aren't sure we can afford to take more time off.  Lord, please guide us in our decisions, prepare us for our days ahead, and provide for our needs.  We are so thankful that God has brought us this far and taught us so much.  Thank you, Lord, for this miracle little heart warrior and for entrusting him to us.  We aren't sure why you chose us, but we love him so much and are doing our very best to take care of him.

Thursday, April 16, 2015

Our journey has just begun...

As we come to the close of our stay here at Vanderbilt, it occurs to me that our journey has just begun.  Ty has won one tiny battle against CHD, but for him the war rages on.  Our little heart warrior still has much to accomplish.

We have gotten so many great reports and to look at Ty in clothes, you'd never know his heart was working so hard!  His little feeding tube coming out of his nose is the only indication that he's not the perfectly healthy boy that we had hoped for.  He is so much more!  He is a strong baby boy who fights with every beat of his heart!

Ty has had his aorta repaired and bounced back from open heart surgery at day 9 of life.  What he still as to contend with are the results of that coarc repair and the remaining defect.  

I want to share what Ty is still fighting because I covet continued prayers.  So many people have been so faithful in praying for our precious son and we are grateful and have seen blessing upon blessing because of those prayers.  I ask that you continue to pray.  I simply pray for God to heal Ty's heart and for him to be a healthy boy.  Here are the specifics of what he's up against:

Ty is still on 2 diuretics to help him get rid of fluid that builds up in his system.  This is a very common side effect of open heart surgery.  He will slowly be weened off of these medications.  He is tachypneic - his respiratory rate has been consistently high and occasionally his little head starts bobbing when he's really working to breath.  This burns extra calories and we sill aren't sure why he continues to have this issue.  They are running a test today to rule out diaphragm paralysis (update: his diaphragm is just fine).  The good news is, he always seems comfortable and it doesn't seem to be bothering him, so this is something we will likely just keep an eye on.  He can't tolerate full oral feeding, so he gets a small 10ml by mouth every 3 hours followed by the remaining 56ml through a feeding pump.  We'll be learning to put in a feeding tube and have already learned how to operate the pump (prayers for mommy and daddy on this one).  He'll be slowly weened from the feeding tube - for some kids it takes days and for some it takes months.  Because of his tachypnia, they are being extra cautious - not wanting to overly tire him out with feeds when he's already working a little extra hard to breathe.  His discharge echo had some interesting findings.  There is a flap of tissue kind of hanging into the aortic arch where his repair was done.  This is causing the blood flow to be turbulent.  This is something else we just watch and hope that as his tissue grows to encompass the patch that was used on the aorta that it will grow over this flap as well.  In addition, his pulmonary pressure (blood pressure going to his lungs) is higher than the rest of his pressures. The medication used to treat this would cause his AVSD, that has yet to be repaired, to worsen, so it is something that we will just have to watch.  Because of his existing AVSD (hole between his upper chambers and leaky valve) he has an enlarged right side of his heart.  We are told after his AVSD is repaired, it will level out to be more balanced with the rest of his heart.  In addition to his little heart, he has a genetic mutation of the y chromosome that may (or may not) impact him later in life as far as being able to have children of his own.

With all of the aforementioned issues, they are planning (here's hoping nothing changes) to send us home this weekend.  This is why we need prayers and why it dawned on me this morning that our journey has just begun.  As bad as all of that stuff sounds, it is all mild compared to what he has already been through and accomplished.  God has brought us so far and we have no doubt he will continue to walk with us each day.  We are so excited to bring Ty home and so nervous as well.

So here are some words of warning to all of our friends and family who can't wait to see Ty and hold Ty and love on Ty.  Please bare with us.  Please be patient and understand.  We have been through the wringer and have much more in our future, including another open heart surgery.  We are also coming out of an ultra-protective environment and have been educated on all the "risks" out there and precautions to be taken when bringing home and caring for a heart baby.  So, be prepared loved ones.  Chris and I are already a little over-protective when it comes to our kiddos and now we are shifting into high gear!  We'll be heeding every word and taking every precaution.  Please don't even think about suggesting a visit if you or your kiddos have been sick, exposed, or recently immunized.  Be prepared for hand washing... like scrubbin' in for surgery kind of washing...and blanket barriers, and, well, everything short of putting on a hazmat suit.  You might even be issued tutorial on how to hold, where to touch, and what to avoid to keep him comfortable - his little chest will take a full 6 weeks to fully heal.  Also know that we will probably be living like hermits for a few weeks, so if you want to see us, or him, you'll most likely need to come to our neck of the woods.  We have been in the hospital for 23 long days and counting - when we get home we plan to stay a while.  We've been advised to keep him out of indoor public spaces as much as possible for as long as possible.  Ty will not even be allowed to get his own immunizations until he is cleared by cardiology at a future follow up date, so we will be on major germ patrol!  I know you'll understand and would do the same for your own kiddo.

The good news is, as over-protective and slightly paranoid as we will be, they are sending us home with everything we need to keep our little guy safe.  I know many parents have joked that they wish kids came with an instruction manual.  Turns out, when you have a heart baby, they do!  Mommy and Daddy got classes on how to care for him and Ty will come home with lots of instructions, a feeding pump, a pulse-ox monitor, and even a home health care nurse to visit and check in on him for a few weeks!  It's a different experience for bringing home baby, but we'll take it.

The cardiologist on service this morning said we'd probably go home "in the next few days."  The case manager, after rounds, pulled me aside and said she was "the needle in his side" and she would keep poking him in hopes of getting us home tomorrow.  So, here's hoping, that tomorrow I will be updating you from the comfort of my own couch with our baby boy by my side.  For now, I'm spending another long and really short day at Vanderbilt - that's just how the days are when you are here.