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!

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.

Tuesday, April 14, 2015

Day 21... 3 weeks old!

 Hello from the 7th floor!
I haven't had a chance to update since we moved out of the ICU!  Praise the Lord for the progress we have seen and for the plans he has for our precious boy!

Sunday was Ty's last day in the PCICU.  He was released to move to the floor Friday night, but we had to wait for a bed to become available.  So, Sunday we visited and took Ava Grace.  She got to "hold" Ty for the first time.  I can't even describe to you how excited she was.  She is going to be one LOVING and PROTECTIVE big sis!

Of course, I had to get in some snuggles too.  Ty is off of all his tubes except for the feeding tub, so it is getting easier and easier to get him out of his bed to hold.  In fact, I was told he was the most popular boy on the 5th floor.  The last couple of days down there he spent lots of time hanging out with the nurses in the nurses station.  They went on and on about how cute he was and spoiled him rotten!  We would show up in his room and he would be missing from the bed!  I even called his nurse once to check on him and a different nurse answered and told me she wasn't his nurse, but was just in there playing with him and he was doing great!  (We have absolutely LOVED the staff here - they are awesome!)

Sunday night late they moved him up to 7 where we can room in!  His room is a "regular" hospital room... complete with TV, pull out bed, and mini fridge!  You know this Mama has been getting in as much snuggle time as possible (taking breaks to go home and snuggle Ava Grace too - dividing time is tough to do)!  Today they put him on a battery powered monitor, so we can be "unplugged" and go out and about the halls if we want to.  For now, I'm keeping him all to myself in his room.  Yesterday he took 10ml of breast milk through a bottle as a "test" and did great!  So, today we are having a barium swallow study that they will look at it on xray so we can make sure everything he swallows is going to his belly and not his lungs.  If he passes that, we can start bottle feeds and hopefully kick that feeding tube.  There is a really good chance he'll need both for a while until he can build up the stamina to eat all of his food through a bottle.  When you have been through so much in your short life, eating from a bottle is a major work out.

 It is hard to believe he is three weeks old today!  He has done so much in these three weeks that have both crawled by and flown by all at the same time!  Chris and I have also learned so much!  I told Chris that between Ava Grace (our wild child who has already had stitches 3 times in her 3 years on earth and who has had 8 surgeries on her Port Wine Stain - see side bar Port Wine Stain/Birthmark for more on that -) and Ty I feel like I could have some type of medical certification!  Chris and I recently took the CPR and Cardiac Care classes required before we can take Ty home.  This morning I have learned how to give medicine through the feeding tube and was told we will need to learn to put the feeding tube in as well!  I know more about the heart and how it works than I ever really wanted to, but now find incredibly interesting.  Ty has just brought a whole other world of experience and learning to us through his special self!  Not to mention genetics and his very unique y-chromosome mutation!  I'm confident we are learning more from our kiddos than they will ever learn from us!

So, today, like most days, we divide and conquer.  I'm at the hospital with Ty and Chris is being Daddy on duty (which he is amazing at, by the way).  I have to take a moment to brag on the man who has literally done it all the last 3 weeks.  He has offered to let me go home and him stay, to let me stay and him go home, and to do whatever I wanted whenever I wanted it.  Today I'm at the hospital and he has already gotten Ava Grace up and ready for school (complete with cute hair) and gone to the grocery store.  I know a lot of people know great guys, and I am probably biased, but I feel certain that I have the most amazing family man on the planet - don't know anyone out there (except for maybe my daddy) that loves his family so much and takes such good care of them.

I have to leave you with a picture my sister sent me last night.  I have been thinking from his first couple day of life that Ty looks like my side of the family, like a Stiner.  This is nice, since Ava Grace looks just like her Daddy and has since the day she was born.  So my sis sent me a comparison of Ty and his Uncle Ken - my brother.  What do you think - family resemblance?

Oh!  One more note, not to be forgotten.  I have been very meticulous about keeping up with funds raised for Ty.  Because I am wanting to be so careful and make sure each penny is accounted for and going to the right place, I didn't want to update our total or do anything, really, finance related while we were in this whirlwind of labor, delivery, ICU, surgery, and sleep deprivation.  That said, I finally had a quiet moment yesterday to deposit and calculate and make sure all the pennies were put in the right place and I have updated our total - check the side bar.  We are overwhelmed with gratitude and the generosity of others both in financial giving and, most importantly, in prayer support.  I don't know how in the world anyone could do this without the good Lord and while their spouse continued to work.  I certainly know that we couldn't have made this work, especially with our other two girls, without Chris being off work.  Each week we get closer to our goals - goals for Ty, which he seems to accomplish daily, and fundraising goals as well.  God has provided so much and in so many ways.  He has provided a way for Chris to be off while we are living this crazy schedule of hospital and home and is providing ways for us to chip away at medical expenses.  He has also provided miracles for our precious boy and his fight against CHD.  Through all of this, it is the most important to Chris and I that God be glorified.  We are thankful for our baby boy and for his heart defects, for it is through this that we have drawn nearer to our Lord and learned to trust His will and His plan moment by moment (and for a planner like me, this is no small feat).  

Thank you Lord for all that you have done and all that you are at work on and all that you have planned.  Amen.

Wednesday, April 8, 2015

Ty Update Day 15 & Special Prayer Request

I haven't updated in a couple of days!  We have had a roller coaster of ups and downs that I have come to learn is just part of life in the PCICU.  We have also tried to have a little bit of "normal" family time with the girls at our own house, so I haven't had much time to update with the back and forth.
It seems these days we take 2 steps forward and 1 step back.  I wouldn't say my faith has wavered, but I would admit to having some emotional moments and having to be reminded that this is all in God's hands! Chris has been a rock, available for every need, to wipe every tear, and to encourage and uplift.  He has been a peace and presence through all of this that has amazed me.  I am so thankful to God that He chose Chris for me.  I can't imagine doing this with anyone else.
 They have removed most of Ty's lines - he is down to: 1. His chest tube (this drains his body cavity of excess blood and fluid) and it should be removed "by this weekend."  2. A pic line that they use to administer medication and draw labs.  3. His feeding tube in his nose.  4.  Vapotherm - nasal cannula delivering oxygen. ...and a few little wires to monitor his heart rate, pressures, and temp.
 They did a scope yesterday and discovered that his left vocal cord is paralyzed.  This is common after intubation and after surgery on the aorta.  This is where my special prayer request comes in.  Please pray specifically that his vocal cord will be healed.  This type of issue can resolve on its own, but it can take months to even 2 years.  Sometimes intervention is needed in the form of feeding and speech therapy and sometimes even surgery.  We are praying that God will heal Ty's vocal cord.  Right now it can be a challenge to eating, so we are just hoping it will resolve with God's prompting and he'll be able to eat like a champ again after he gets off vaoptherm.  That's our other request - pray that we will be able to get off vapotherm.  We are kind of in a holding pattern until we can get that thing out of the way!  It is on it's lowest setting, but every time they take it off his respiration is too high and back on it goes.  Hopefully this will be our next big step - no more vapotherm!
 This little boy is so loved already!  His sisters adore him.  Ava Grace is head over heels in love and just gushes over him every time she gets to see him.  It melts my heart!
 The good thing is we are able to hold Ty more - that is a very good feeling!  He is also much more alert and interactive and that is so encouraging!
 Please keep us in your prayers.  It is a daily challenge to balance life with the girls and with Ty.  We spend a lot of time on the road trying to do it all.
We are so grateful for all of the prayers and support.  We are most grateful that our little guy is showing slow improvements each day.  Even though we have seen setbacks, when we look at the big pictures he is getting better and better and closer and closer to coming home!
 I'll try to update again tomorrow.  For now I am hopping off here to go snuggle that sweet boy and then head back to get snuggles from my Ava Grace!  Gotta fit it all in!
Lord, please work through us and our special little boy.  We know you have great plans and pray that you will use us and our situation to bring glory to your name!  Amen.

Saturday, April 4, 2015

Day 11: quick update

Ty has had such a great day!!!!  

We showed up this morning late and missed rounds for the first time in 11 days.  We came in to a much less puffy Ty who had been peeing like a champ all night!  Thanks, no doubt, to answered prayers, he had a very stable night and got rid of a lot of his excess fluid!  In addition, his sweet nurse had played dress up!  She found his diaper bag and had him in a hat, socks, and snuggled next to his bear!

 Today has been a great day and we have seen steady progress.  He has continued to void fluid, his catheter was removed, he got breast milk through a nasal feeding tube placed this morning and is about to increase that.  He has been breathing over the ventilator and is currently in the middle of his first c-pap trial (where they turn the vent all the way down and let him do all the breathing on his own to see how he does for an hour).  He will do a few c-pap trials over the course of tonight and if he does as awesome as he is on this first one, He'll come off the vent in the wee hours of tomorrow morning.  What an Easter blessing that would be!

They came in with meds at one point today that had run low and the nurse offhandedly commented, "There's angels in this room."  I thought, you have no idea how true that is!  At evening rounds just now the doc said, "He's a champ!"  What a great day of progress this has been.  I am sure there will be ups and downs, but I am so pleased with today.  

Thank you Jesus for hearing and answering our prayers for a stable night and for lots of pee pee.  Thank you also, Father, for a great day full of progress.  We can't wait to celebrate Ty's first Easter tomorrow and to get to spend time with Ava Grace as well.  Please bless us with safety as we travel to get her and with another stable night with lots of progress for Ty.  Amen.

Friday, April 3, 2015

Post Surgery Update: Days 9 and 10

Here are a couple of pre-op photos:

Yesterday at around 8:00 the anesthesia team showed up at our NICU door to get Ty ready to head up to the operating room.  Chris and I were much calmer than I thought we'd be.  Over the previous 24 hours we had seen Ty begin to struggle a little.  His respiration was too high and his little heart was just having to work too hard.  He was just sleeping non stop, not even cracking and eye to eat.  We could just tell that it was time.  He needed his surgery to happen.  It was a couple hours before surgery actually began.  They got him started on anesthesia, cooled him down to slow everything, and then began.  The first incision was made about 10 minutes after 10 and by 11:30 they had stopped his heart and had him on the heart and lung bypass machine.  At about 1:00 we got a call that his aorta had been repaired.  Dr. Mettler said he spent about 20 minutes looking at his AVSD to see if he could get it too and eliminate the need for a second open heart surgery.  He was as disappointed as we were when he told us he just didn't feel comfortable doing it.  He said the tissue he needed to anchor the patch was just too thin and he didn't want it to fall apart and create more problems and a more complicated surgery later.  He felt like the risk of tearing an additional hole outweighed the risks involved in a second surgery and we trust his judgement.  At 3:00 they were finished and we got to talk to Dr. Mettler, but it was after 5:30 before we were able to go back and see our little guy!  

Here are his post-op photos:

This morning at rounds they said he had "kind of a rough night" but nothing unexpected.  He was a bit puffy this morning and has continued to puff up throughout the day.  This is a normal inflammatory response.  He is on lasix to help him pee of fluid.  They really would like to see him peeing a lot more than he is, so we are now asking everyone to pray for lots and lots of pee!  His blood pressures have been good all day and his anesthesia is worn off.  He is doped up on morphine, so he isn't in any pain and we are just waiting for him to get rid of the excess fluid before much else can progress.  We had hoped to wean from the ventilator today, but it doesn't look that like will happen just yet - gotta deal with the fluid first.  I have caught him (on the monitor) taking a couple of breaths on his own, so that's a start.  He also cracked an eye at us this morning.  Right now we just need lots of pee, to continue to be stable, and for his little body to "rest and get used to the new plumbing."

Because his AVSD couldn't be repaired at this surgery, we'll be planning a second open heart surgery around age 2 or 3.  For now, Chris and I are trying to focus on one day at a time... healing from this one and hoping for a day soon when we can take our baby boy home!

Thank you for continued prayers and support.  I have many many many thank you notes to write - please know they are coming, but I just haven't been able to focus on anything but our little guy at the moment.