Tyson Hugh Hooper

Tyson Hugh Hooper
Our son, Tyson Hugh Hooper, was born with coarctation of the aorta, hypoplastic arch, and a transitional avsd. His first open heart surgery reconstructed his aorta and was on day 9 of life. His second open heart repair was not anticipated to be needed until two or three years of age. Ty had other plans. We spent the vast majority of his first 3 months of life at Vanderbilt as he went into heart failure and was diagnosed with pulmonary hypertension. As a result, the medical team concluded that he needed the repair much sooner than usually recommended, and at just shy of 3 months old Ty underwent his second life saving open heart surgery. God has already worked so many miracles in Ty's life and the life of our family and we know he is using our story. Because of this, we are grateful for Ty's special heart and feel beyond blessed that God chose us to travel this road. We ask for prayers as Ty continues to heal. We are praying for a full recovery and life without restrictions for Ty. We are praying for God to use our family and Ty for His glory.

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!

Sunday, March 29, 2015

It's been a big day already

Our main man is "eating like a champ" according to his attending this morning!  Rounds were awesome will all good reports and we upped his breast milk intake again.  

Ty found his thumb for the first time and we were actually there with the camera to catch it!  He thought it was the best thing he'd ever done, but then lost it again.  He's been eating his hands when he's ready to eat - we love it!

The biggest news of all is that this happened...

Because of his great condition and my tearful plea, the wonderful nurses and doctors worked a little NICU magic to waive some rules so the girls could have a QUICK encounter with their baby brother.  We were on our way to the park when we got the call that the charge nurse had approved and Ava Grace said asked where we were going.  When we told her she was going to get to meet her brother, she was so crazy excited!  She said, "Oh my goodness!  This is so much cool!  This is better than the park!"  
 Ava Grace had to be carried in - wasn't even allowed to touch the floor - gotta protect all the little ones from germs.  Her Daddy held her up at a safe distance so she could examine baby brother.  Then we got a couple family shots and he took her back out.
 They deemed Lily old enough and healthy enough to scrub and gown up and to get to hold him....
...and it just happened to be time for mommy's milk, so she got to do that too!

We feel blessed beyond belief that the girls got to meet their brother and hold him before his surgery tomorrow.  This is the best day yet!

Now, on to Ronald McDonald House Easter Fun Day!  Egg hunt, face paints, and bouncy houses are on the agenda.  :-)  Then back to the NICU for more rocking time for this mama!

Friday and Saturday...

Warning: no time to proof read - just posting so you can finally have an update!  :-)

I have had so very little time or energy.  I have wanted to blog the last two nights to update, but at the end of the day I had nothing left!  So this morning, while I sit here hooked up to a pump, I figured I could at least hop on and give everyone a quick run down and some pictures from Friday and Saturday.  The pictures are out of order, so I'll just write under each one to fill you in on what they are.  Here is our latest news:

Friday and Saturday he got rave reviews from rounds and his attending said we could try breast milk from a nipple and then bottle.  He just gets a few swallows, but that is a start.  Saturday he had done so well Friday that they doubled his breast milk intake for the day.  For those of you who prayed for my milk - thank you!  We serve an almighty God and he is blessing me with the exact amount of milk that Ty needs.  It is awesome!  (back story, for those who don't know:  I wanted SO BAD to breast feed Ava Grace - we tried EVERYTHING and my milk never came in,   So me having any milk is a blessing and having enough to actually feed Ty is a miracle!)  He doesn't get to go to the breast because they have to measure everything,  but that is ok with us, we are just exciting he is getting mama's milk!

They have removed his IV and put in a pic line.  This is like a long IV that threads through his upper arm all the way to a vein just outside his heart. This is much more stable, so we can now move him home and hold him more!  Very exciting.

Chris and I have both changed his diapers now.  We have also both fed him - and let me just say our boy was born to eat!  Despite not having anything in his mouth but a paci and no chance to develop his sucking instinct for the first two days of life, with very little prompting he figured it out and gulped the milk down!

His coarctation is long, but still in the range that they can do an end-to-end repair and do not have to use other parts.  Unfortunately it is big enough that the cardiology team decided it would be best to go in through his chest.  His first open heart surgery is on the board for Monday.  They do have another "major thing" (in their words) on Monday, so he might get bumped to Tuesday... but for now the plan is Monday at some point.

Yesterday for the first time he woke up and was very alert when I went to see him in the morning.  Then he slept all day and woke up to be alert and eat when Chris and I went back in the evening to see him!  It was so fun!  I'll post a couple videos at the end I got a couple pictures of him with eyes open.

Overall he is doing so well.  Not once have they given us bad news or had to give him oxygen.  Praise Jesus for his overall great health!  he also hardly ever fusses or cries, but the boy does NOT like getting a diaper change... that will get him tuned up every time.  

So, now for the good stuff!  Check out our sweet little guy:

 Friday with IV still in his arm.  LOVING his golfer hat!

 Second time getting milk through a nipple  - it is such a small amount that they just drop it into the nipple with a syringe.

Actual milk and mama pumped!  You have no idea how exciting it was to turn this in compared to my other bottles with literally half  a teaspoon in them!  When they doubled his intake, my output doubled almost exactly. What an amazing God we serve! 

OH!  Forgot to mention above that we were discharged.  We weren't sure what to do since home is an hour away in good traffic and longer in bad.  Our nurse really pushed us to consider Ronald McDonald House.  I have heard of people waiting so long on the list to get a room.  Our social worker put us on the list and our nurse told us to call every day to see if our name was up.  I thought it would never happen!  I called the day of discharge at 1:00 and asked and she said they had our room ready and we could check in at 3:00.  Again - a miracle.  Thank you Jesus. This place is amazing!  So much for the kids to do, so helpful.  We are so blessed to be here and can't wait until we are able to give back in so many ways!

 This is after he got his IV out.  The pic line is in his upper arm and his hand is just bandaged from where they took out the IV.  He gave me a little peek at those eyes too!

A wonderful group of people provided lunch at the house yesterday complete with dessert!  Funfetti cake with sprinkles - yes please!  Ava Grace, as you can see, is loving it! 

Snoozing on Friday. 

Awake finally!!!  A bath, diaper change, and bottle did the trick and mommy got to see those beautiful baby eyes! 

MAD!  he doesn't like to be moved around, so getting him up to eat makes him mad.  Plus he felt teased a little because she was showing us the proper way to give a bottle to a NICU baby.

 He doesn't care about the proper way - he just wants the good stuff.

Last night Daddy got to visit and see him be alert with his eyes open! 

 And he had to get some kisses... we like lots of kisses!

It was has been a really hard last few days.  So worth it though!  

Yesterday I had a hurricane of hormones.  I cried pretty much all day long.  Hopefully I'll be better today because that made my head hurt.  I told Chris and Mom that I'm pretty sure that would have happened even if we were all healthy and home - just normal pregnancy hormones regulating and some sleep deprivation, but it was awful still the same.  Anxiety about Monday is setting in, please pray for a peace that can only come from our savior.  Thank you Lord for mom and all she is doing to keep us going.  She has slept at the hospital, at the Ronald McD House, and at our house.  I know she must be worn out from all the shuffling.  I don't know how we would manage without extra help!  I am so thankful for Chris who has been all over creation trying to keep our little family running as "normal" as possible - getting Lily to and from school and her volleyball games and taking her out for special time!  He's done an amazing job seeing to the every day tasks and this has meant a lot of time away from Ty and from me and I know that has to be hard.  Pray for Ava Grace - she has been shuffled too!  You can certainly tell that she misses the undivided attention of Mommy and Daddy and she is pretty clingy when we are together.  I worry about her, but I know God will take care of her too and this is just a short phase we have to get through until we can take Ty home with us!  One last prayer - the NICU said they might send Ty up to PCICU early or make an exception in the NICU so the girls can see Ty before he has surgery.  If that is going to happen, it would have to be today since Lily goes back to school in the morning.  I think that would be good for both of them and I really hope they at lest get to see him, even if only through a window, before Monday!

Today is a new day.  I have yet to establish balance of time with Ty and the girls and Chris.  I'm wondering if it is even possible, but I am going to try.  I know we have friends visiting this afternoon and an Easter Egg hunt at the Ronald McD house!  The girls are excited about that and its nice to have "normal" fun stuff to do with them so they don't feel overshadowed by brother!  Hoping we have another good day with Ty.  I'll updates as soon as I am able.  For now, I'm up and getting ready to head over for morning rounds!  Thank you again for the prayers and support - we feel very loved on and very grateful!

Thursday, March 26, 2015

Day 3 with Ty

This little guy was referred to as "amazing" this morning by the cardiologist!  He is doing so well.  He hasn't had to have any oxygen since he was born, his vitals have all remained strong and healthy.  His temperature was elevated once, and that can be a result of the meds keeping his heart happy, but they are doing a culture just to be sure.  His temp came down and has remained "normal" all day, so we are encouraged.  After his echo yesterday, they have chosen Dr. Mettler as his surgeon and determined that it will be best to do a front-entry "open heart" approach to his coarc repair.  This means we'll be here for at least 2 weeks.  The echo also revealed that the hole in his lower chambers has been completely self-corrected.  It doesn't quite look the same as you or me, but tissue has filled in the gap and the two chambers are separate and should remain that way as he grows. Way to go God - thank you and praise you!  This leaves him with a hole in the upper chambers and a cleft in the valve - all repairable by open heart surgery that may not even need to happen until age 2 or 3!  Thank you Lord - you are amazing!  So overall, we are very pleased.

And then....

...this happened!  He is doing so crazy good they decided he could get up and attempt to breast feed!  He was sleeping and uninterested, but I enjoyed holding him still the same!  This was certainly a fantastic day!  

Thank each of you for all of the ways you are loving and supporting us.  Thank you most of all for all of the prayers!  We hope to keep the good news rolling in!  Our little Ty is clearly a fighter!

Wednesday, March 25, 2015

Meet our handsome boy...

Yesterday was a long day, but worth every moment!  We fought crazy Nashville traffic to arrive at Vanderbilt for induction 30 minutes late.  It was a VERY slow start and I never made it past 3.5 cm.  Although I was contracting good and things were moving along at a slow but steady pace, Ty was not enjoying the process.  His heart rate was steady, but indicated he was tired and didn't fluctuate enough!  We rubbed on his head to "wake him up" a few times and each time his response was less enthusiastic.  The result, given his little heart already has plenty of challenges, was to go ahead a do a c-section just to keep us out of any trouble.  So, at 7:00 we started getting ready at 7:24 we met our precious baby boy!

Ty arrived crying loud and clear and pinked up pretty quick with the help of a little oxygen.  He weighed in at 8lb 7oz and measured 20.5 inches long.

Ty's NICU team did a quick clean up and started his IV right there in the operating room and then I got in a quick kiss before Chris and Ty's very talented team of doctors sped over to the Children's hospital so start his full evaluation.

It was all hands on deck in the OR and I was ever so thankful for each and every wonderful doctor and nurse who helped get Ty here safely!  

About 10:30 last night I got to go to the NICU to see Ty for the first time out of the operating room.  He is such a sweet and handsome little guy!  I felt blessed to get to touch his soft cheeks and tell him how much I loved him before we headed back to rest up.  He had a big night of rest himself and a preliminary echo cardiogram to see how things were looking.

Chris and I got up bright and early this morning and headed straight to the NICU to be there in time for rounds.  While we waited for his medical team to make their way to us, his nurse asked Chris if he would like to change Ty's diaper!  We were pretty stoked at the opportunity to help care for him!

After he had a nice clean diaper on, they asked if I would like to help wash his hair!  It was so fun giving him his first shampoo.  Well, at least mommy thought it was fun, Ty didn't enjoy it quite as much.

 We put on a nice clean and dry hat on that freshly washed head and then it was time for rounds!  The doctors has news for us after reviewing his echo.  First of all, he is doing VERY well and his stats look great!  His pulse is a little weak in his lower limbs, but they aren't yet sure if that is because of his coarctation (narrow portion of his aorta) or if that's just Ty being Ty.  Tests from today will let us know and we'll find out at rounds tomorrow morning.  

They said his coarcatation is a pretty big segment of his aorta, and they are debating whether or not they can do a thoracotomy (go in from the side for the repair) or if they will need to open his whole chest ("open heart" surgery approach). Ultimately that will be up to his surgeon and we may know that tomorrow as well.

 The great news of the day was that his AVSD is looking much better!  The hole in the lower chambers is almost completely gone and his valve is functioning well!  This means surgery #2 that will be open heart for sure may be postponed for a year or two! 

He had a few other tests today - they scanned his head and kidneys just to make sure everything looked good and he passed with flying colors again.  We will find out more detail about his second echo at rounds in the morning!

 This afternoon Daddy got to change another diaper and we got to give him lots of love and kisses!

 As you can imagine, we are already deeply in love with this little guy and we are dying to get him in our arms!
 Because of his condition, he gets all of his nutrition through a central line in his umbilical cord.  Babies with heart conditions usually aren't allowed to eat the traditional way until fully recovered from surgery.  However, the medical team thought that he was doing so well that they might let him try a little bit of breast milk to see how he does.  This is an area we need prayers for as I have not been able to produce any milk yet.  This was major motivation for me, however, and I am pumping away and doing all the tips and tricks I know to see if I can produce enough for him to try!
 Another area we request you pray for tonight is the coarc repair!  If they are able to go in from the side it is less invasive with a shorter recovery period.  For that reason, our prayer tonight is that his coarctation is able to be repaired from the side instead of through the middle of his chest!
 Most of all we are praising God for this beautiful boy.  We are thankful for a safe delivery and we are praying for healing and recovery for me and Ty both!
One last note on today...
My Mom and Dad, who are in town keeping Ava Grace, brought her to visit today.  It was such a bright spot in our day.  I had been having a lot of severe muscular pain in my shoulders and back and when Ava Grace and I snuggled up together, my pain literally melted away.

There is no gift more precious than a child.  No matter how big or small, they are certainly God's biggest blessings.

Sunday, March 22, 2015

In all things God works for good...

My latest post was met with some criticism.  I have had a negative comment here or there in my past blogging experience and have always been able to simply delete it and move on.  This particular comment, however, at such a critical time for my family, stuck with me.  I actually woke up several times last night constructing different responses in my mind.  My blog is set up to screen comments, so they come directly to my email for approval before they are displayed on the blog.  This is primarily to avoid the occasional piece of spam, but in this case served to keep negativity off of this page.  This particular comment was mean spirited and full of assumption and accusation.  It actually encouraged others not to support or help our family in any way.  Worst of all, although left anonymously, it clearly came from someone who knows us, or at least Chris, very well and either is, or is related in some way, to a colleague of his.  I had so many responses in my head.  I could fire back with an "answer" for each false accusation.  I could straighten out every assumption that this person made with personal details of our finances and our doctor appointment schedule and intimate details of our comings and goings over the past weeks.  I had in my head a pretty good response ready to go this morning, but I couldn't find any peace with it.  I couldn't feel "good" about a reply to this person.  As I laid in bed this morning, God spoke to me.  I heard him asking me to turn to him, turn the other cheek, seek - what would he do.  So I hit the scripture.

One of my biggest pleas in our situation with Ty has been that God would be at work and use our story.  We cling to Romans 8:28, "And we know that in all things God works for the good of those who love him, who have been called according to his purpose."  Even in our fear for Ty and his health, we know that God is at work and that good will come from a scary situation.  We pray that God will use us and our journey to bring glory to Him.  As hurtful as the comment was, I believe that God will work good through this and every part of our journey.  So, this morning I continued to claim this verse.

A friend that Chris consulted last night, reminded us that the more we "put ourselves out there" the more we open ourselves up to criticism, etc.  He is absolutely right.  I don't know that we have ever, as a family, been more transparent or in a more likely situation to be used by God.  Given that, we should expect to meet adversity and criticism - more than usual.  As such, we have to prepare ourselves and seek God in every situation and in every response.

We have to push away fear and doubt and trust God.  In reading this persons comments, the thought crossed my mind, "What if we get the miracle we have prayed for and God completely heals Ty?  Will that make this person feel justified?"  There will still be such a need - all the bills for prenatal specialist care, the time off work... the list goes on.  I had to remind myself, that we can't fear and doubt, we just have to trust God.  God has led so many of you to support us for a reason and we are so very grateful.  God is using so many people and so many ways to provide for our needs and to support little Ty and his fight against CHD before it even begins outside of the womb.  It is humbling and overwhelming and wonderful to see God working in our lives.  He has a plan for Ty and for our family that might involve complete healing as we have asked - either before birth in the form of a miracle or after at the hands of skilled doctors.  He may even have a different plan.  Our job is just trust, no matter what adversity we face and no matter what challenges come our way.  Trust Him and praise Him in all things.

This morning I found another verse that brought me comfort.  Matthew 5:11, "Blessed are you when people insult you and persecute you, and falsely say all kinds of evil against you because of Me."  I'm not sure what the motive was of the criticism we received, but God will work through that as well.  I have come to the conclusion that the best reply is no reply, but prayer.  I will not reply directly on email to the comment that was left.  I will delete it and pray for the person who sent it.  I will pray that God will work in their heart and reveal himself and his great work to them.

As for why I am acknowledging the comment on my blog?  In reading this morning on the biblical way to respond to criticism I found this:  "Ask the Lord to use false accusations as a platform to display greater courage, faith, and hope in the Lord's ability to cause all things to work together for good."  and "Never doubt God's ability to send the most unlikely people, provisions, and processes to deliver you."  I felt led to share, to continue to be transparent.  This isn't intended as a reply to the person who left the comment, but as a way to share our journey - every part of it - publicly, which is the reason this blog exists.  I have no idea how God will use this, or any part of our journey, but I trust that there is purpose and He will.

Saturday, March 21, 2015

Our last weekend as a family of four...

It is hard to believe how quickly the last few months have gone by!  Our little Ty will be here on Tuesday and we couldn't be more excited.  The Lord has truly filled us with his peace and we are trusting that He is in control.  In that respect, even though in my head I know this delivery and baby will most likely present some different challenges, in my heart I feel exactly like I did when anticipating Ava Grace - just plain excited and ready to meet the newest member of our family!

I think I am more anxious about the girls, especially Ava Grace, adjusting to a younger sibling.  What a big adjustment for a little girl!  Of course, Chris and I worried about Lily adjusting to Ava Grace and she did so with flying colors.  Lily has made us so proud from day one in being such an amazing big sister and young lady.  Lily could write the instruction manual on big sister how-to.  She is so gentle, kind, helpful, and patient.  Ava Grace might need some pointers... in all of those areas.  lol.

Today and tomorrow I plan to finish up getting the house ready for Ty.  I have a few things left to wash and some odds and ends that I want to take care of before we head to the hospital on Tuesday.  We also plan to have some fun with the beautiful weather and to go to Lily's volleyball game tonight!  I'm hoping for a fun, productive, low-key, no-schedule weekend together.

I have so many thank-yous to send and 3 showers and a benefit to blog about!  Stay tuned, I'm hoping to do that this weekend to.  In the mean time, let this serve as a temporary, but heartfelt THANKS to everyone who has been so supportive.  We have had friends and family and even some strangers give donations to help us take time off work and pay for medical expenses.  We have had benefits and been showered with gifts that have just overwhelmed us with gratitude.  Most special of all, we have been added to countless personal and church prayer lists and I can assure you that we feel every prayer!  We believe that God has already performed miracles for Ty and have seen the wonderful ways he is providing for our needs.  We are blessed and ever so grateful for every prayer and know that God hears each and every one and will do great work through Ty's story!

Tuesday, March 10, 2015

An update on Ty

I spend another day at Vanderbilt yesterday checking up on our little man.  Maybe I should start calling him big man.  He is weighing in at 7 pounds now with a predicted pound-a-week gain for these last two weeks.  I am SO not prepared to give birth to a 9 pound baby, but the machines are just estimating his weight, so there is a margin of error there.  I figure God knows the perfect size for him to be and that's what he will be, so no since in worrying over it.

We had a non-stress test yesterday where we monitored his heart for an extended period of time.  He, and his ticker, passed with flying colors.  I even had a contraction while hooked up to the monitor and his heart rate went up during the contraction, not down, which is a very healthy response that we were happy to see!

Following the non-stress test, I headed to cardio for our last echo before Ty arrives!  He was stubborn, as seems to always be the case, and spine out again.  Our wonderful cardiologist worked hard to get as much of a look as he was able.  He could see even less this time because of position and size, but we were still greeted with what we feel is good news.  The narrowing in his aorta seems to be a small portion (they had originally said it was a rather long, extended portion) and the AVSD (holes and valve issues) looks like a partial instead of a complete like they originally thought.  These are both great news to this Mama's ears!  Anything that lessons the severity of his defect from the original diagnosis I am counting as straight up miracle and blessing from God as a result of all the wonderful prayers going up for us and for Ty!  So, keep those prayers coming folks!

Ty will be here two weeks from today!  Nesting has kicked into high gear and my to do list seems to only grow as I mark things off.  Mark off two things, add three more.  That's the way it goes, I suppose.  Yesterday one of my doctors asked if we were ready.  I told him I don't think you are ever really ready for a new baby.  He laughed and agreed.  Perfectly healthy or not, a new family member is a major adjustment and you can prepare as much as possible, but some things just have to happen when they happen and we adjust.  I can't wait to meet our little guy.  We'll be as ready as we can be... the rest is in God's hands.  I had a teacher once tell me, "prepare as if everything depends on you, and pray as if everything depends on God."  I have always thought that was pretty good advice.  So we are doing our part to prepare, but remembering that it is all ultimately in God's hands and we can't wait to see what He has in store of us and for Ty.

And because posts without pictures are no fun, here are some snow day shots from our most recent winter weather.  (Sorry no shots of Lily this time... she stayed at her mom's this time to get to enjoy playing in snow there with the neighborhood kids since she already got snowed in here last time!)

Now bring on spring!!!!