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!

Friday, August 10, 2012

Ava Grace's Surgery #1

This was a big week in the Hooper House!  Surgery, braces, school starting, whew!  ...but we'll start with the surgery for this post...

  Ava Grace had her first laser surgery to reduce the appearance of the birthmark on her face on Monday.  Prior to this week I scoured the internet for blogs and information on her type of birthmark - especially for post-op photos... very hard to find.  I wanted ot know what it was going to look like right after surgery, the next day, the next week, etc.  For that reason, I plan to blog several pictures in this post and future posts.  Maybe one day someone who is looking for the same things I was will find my blog and in it a few answers to ease there mind. 

(day before surgery)

Ava Grace was born with a birthmark called a Port Wine Stain (PWS) on her face.  A PWS is a vascular malformation.  Basically, Ava Grace has normal capillaries in an abnormal quantity.  This causes the skin to appear bright pink/red on her cheek.  If I had a dollar for everyone that has said, "Oh, honey, it'll fade, just give it time!" I think I would be a millionaire!  Some birthmarks fade, but a PWS does not.

(Leaving for Vanderbilt Children's Hospital at 4:30AM)

As a PWS ages, it will frequently become darker and pebbly or rough.  Later in life, if left untreated, they can grow thick and textured and can begin to look like a growth or deformity.  For this reason, even though we love our wild girl just like she is and think she is the most beautiful baby in the world, we decided to schedule laser surgery to treat the PWS.

(With Grandmommy, waiting to be called to pre-op)

I think the whole experience of her surgery was much harder on us than it was on Ava Grace!  The unknown was the worst part - we weren't sure how she would respond to the anesthesia and that scared us both!!  When we got to the surgical floor at the hospital we were humbled.  There was a huge waiting room full of kids and worried parents!  It was certainly eye-opening.  I sat there looking around thinking - this many kids needing surgery?  This many kids on one morning at 5:30 AM?  And I overheard a nurse say, "we don't have too much going on this morning."  WOW.  I felt overwhelmed and so thankful that we were there for an "elective" surgery and not something that seriously affects her health!  How scary. 

(Ava Grace with Daddy in her tiny hospital bed, in her tiny scrubs, playing with her tiny blood pressure cuff)

Chris and I were both nervous wrecks, but tried to put on our brave faces for Ava Grace!  She could only have formula until midnight, so I woke her at 11:30 for a bottle and again at 3:30 for a pedialyte bottle because she could have clear fluids until 4:00 AM and then nothing until surgery.  Our girl LOVES to eat, so I was a little worried, but she did great!

(Waiting in pre-op)

After we were called to pre-op, we went into a holding room where they came and took her vitals.  We dressed her in her little bitty scrubs and waited there while everyone came to speak with us.  Each member of the surgical team came to personally meet us and explain/answer questions about their part of the procedure.  We met the nurses that would be with her, the anesthesiologist, the nurse anesthetist, and then Dr. Chester herself came by to mark Ava Grace's cheek and have us sign consent.  And then, the hardest moment.  We had to hand Ava Grace over to a nurse and kiss her goodbye and go back to the waiting area.  Oh. My. Goodness.  It was so hard to walk away.  20 minutes later we were called.  I was worried something went wrong, but it turns out they were done!  We met with Dr. Chester and she told us that she felt like she got good results, kept the laser set very low, and that Ava Grace was in post-op and as soon as she began to stir we would be called to go sit with her.  It was not long before we were being led back to post-op and there was our sweet angel... barely conscious, sitting propped up by the nurse, sucking down 4 ounces of pedialyte.  We got to hold her and rock her as she finished her bottle and continued to work on waking  up and becoming alert.  About 10-15 minutes later we were checking her out and heading to the car!  The whole thing was so FAST!  We left the house at 4:30AM and were back home by 9:00AM.  I was SO impressed with the hospital and everyone there!  I also can't say enough about Dr. Chester - she is WONDERFUL!

Home from the hospital!

Ava Grace's PWS was a dark purple color after surgery.  You can see the little circles that the laser makes in some of the close up pictures.  The good news is, it didn't hurt her much at all.  Dr. Chester told us that it would feel like a mild sun burn for the first 24 hours or so and then she wouldn't even feel a thing after that.  The most challenging part for Ava Grace was letting the anesthesia wear off.  Her balance was a little off and she'd get clingy and drowsy off and on all day, but other than that she was her normal happy self!

Here is what her PWS looked like about 3 hours after surgery.  You can see her eye is a little puffy.
She took lots of short naps and did lots of snuggling!

Amazingly, her cheek feels perfectly normal.  Although it might look like a scab in the pictures, it's actually as smooth as ever.  Dr. Chester explained that the "damage" was all within/under the skin, not on top of the skin.

Overnight her eye got pretty puffy, but we were prepared for swollen shut and that didn't happen!  By mid-morning the next day she was rip-roaring-and-ready-to-go!  Emotionally I was still recovering, but she was happy as a clam and all over the place! :-)

We are so happy to have surgery #1 under our belt!  Recovery takes 10-14 days... we are very anxious to see what type of results we got from round one!  :-)  Hopefully it won't take the 10-14 treatments that our dermatologist predicted!

I would also like to thank Mama for coming to help us out!  She went with us to surgery and babysat all our stuff in the waiting room for us and she stayed home Tuesday night with Ava Grace so that we didn't have to take her with us to Lily's open house.  We can't thank you enough, Grandmommy!  You were (and always are) such a huge help!

I have lots more pictures to share from this week, but my computer has decided not to load them and I am ready for bed (yes - it's not even 9:00 yet, lol).  I'll try to load more picture tomorrow, but for tonight I am headed to the bed!  :-)


Sarah said...

what great pictures and I'm so glad you're documenting this for us and for others to use as reference. Turning a not so fun experience into something useful and helpful for others.

Allyson said...

OH MY WORD. The thought of handing over my baby for surgery and not knowing what's going to happen! SO thankful with you that it's over and she did so well and it was SO fast! Wow! Love hearing all about it! Praying for you little Ava Grace!