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!

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!