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.

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.

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.

Our sweet baby boy...

We are confident in God's plan for out little guy and know that God has big plans.  We feel that God has already worked through him and in the picture above, Ty is taking his first step in contributing to the greater good.  Chris and I were both confident that if we were asked to participate in research we would.  Ty will be a part of four separate research studies to hopefully help babies like him the future.  Above he is undergoing his base line test for the first study that is already progressing more rapidly than expected.  They are studying infant's inflammatory response and blood flow after open heart surgery. For this study they put a probe on his wrist with medication that feels a little tingly for a few moments.  The probe measures blood flow and inflammation in very top layer of skin.  They will do the test again after surgery and 2 or 3 different times to gather data.  Ty will be asleep for the additional tests and the first one didn't seem to bother him and literally only takes a couple of minutes.  Ty will also participate in an ongoing study of the use and effects of anesthesia on infants for heart surgery.  This study actually uses blood samples that the lab would dispose of, but instead pass down to the research lab.  So he isn't directly impacted, but they get research that may help future little ones.  The last one is the most interesting and important to Chris and I.  Ty's heart issues have overshadowed the fact that he has a genetic mutation of his y chromosome.  Our genetic counselor only found 11 other cases of this in her research.  For this reason, we have submitted Ty's DNA to be held in research lab.  It will be available for years for study.  The last study (so far) is a study of the correlation of body temperature and blood pressure.  An infrared camera will be placed  above Ty after surgery for a couple of days.  They are looking to see of there is a rise or drop in body temperature prior to a change in blood pressure.  He will be one of the first babies to participate in this study.  All four studies, of course, are associated with a number and not his name or identity.  We are very happy that he may be able to help other babies in the future by helping research!  If others hadn't been studied in the past, we wouldn't be where we are getting his heart repaired.  Hopefully we are paying it forward on some small scale.  We believe that this is just one of the many reasons God chose this path for Ty!

Easter Fun at the Ronald McDonald House!

This past weekend - which seems like an eternity ago and like yesterday all at the same time, we got the girls out for some Easter fun!  We were blessed with great weather and the company of the Hutchings to brighten our day!  Megan, me and the girls went outside for "the Easter hunt," as Ava Grace calls it, and Web, Chris, and the boys stayed inside for guy time in the teen room playing and watching baseball.

It was nice for the girls to get out and do something "normal" for a change.  This last week has been so strange and mostly inside a hospital, so the fresh air was wonderful! 

Ava Grace, who has no fear, ran into the arms of the Easter bunny!  She also gave him a high five and a thumbs up.  She cracks me up with her confidence.

Love these girls and their love for each other!!! 

There was a cake walk, games, bouncy houses, and face painting and the girls had a wonderful time! 

 We also walked to the park across the street to enjoy the weather.  We are so glad spring is springing!

Surgery Tomorrow

We had a rough day today.  I knew today would be an emotional day feeling the magnitude of tomorrow, but a layer of emotion was added when I arrived bright an early to less-than-perfect news on Ty.  Overnight Ty developed some fluid in his lungs.  They did a chest x-ray and echo early this morning to see what was going on since his respiration was too high and his stats were less than stellar for the first time.  Although after reviewing his x-ray and echo we were assured this was "not unexpected" and "nothing to worry about," I was still pretty shaken.  This is the first time he hasn't been perfectly stable and getting glowing reviews.  They started lasix to help him rid extra fluid, stopped his breast milk feedings, and put him on an nasal cannula with the equivalent of room air.  Over the course of the day his stats improved somewhat, although his respiration remained high.  After being on prostins for so long to keep his heart in good shape, his lungs began getting too much blood flow.  Anyhow, it meant more tubes, lots of monitor watching, and stress for us.  Thankfully we had lots of visitors since they lifted the flu ban and we were allowed more guests.

I haven't had the emotional reserve or physical energy to update the blog in a few days and I know there is a lot to say, but this is going to be rather scattered.  I am so exhausted I can't see straight and as I type this it is just as a distraction to keep my mind off of tomorrow.  I told Chris I don't know if this will be the longest night of my life or if tomorrow will be... or maybe both and a few days after that.  I wish I could go to sleep and wake up in about 4 days when the worst of this is over.

We met our surgeon.  Dr. Mettler.  He does all of the infant transplants at Children's.  He and one other doctor there also do all of the "most complex and complicated" cases, according to one of our nurses.  This is very encouraging.  He was wonderfully reassuring.  He thinks that it is possible that once he gets in there he may be able to fix both defects as the same time!  If this is the case, we won't have to return for a second surgery.  We are hoping this is possible tomorrow and for the best.  

Please pray for Dr. Mettler and the entire medical team tomorrow.  Please pray for Ty.  I am praying for Jesus to guide Dr. Mettler's decisions and hands as he works.  I am asking God to bless us with a perfectly executed surgery and an extremely quick and smooth recover.  

As I type my eyes are heavy and I know I'll be up very early to get back to Ty, so I'm signing off.  I'll post pictures and updates tomorrow if I am up to it.  Thank you for the continued support - God is good and I hope he is glorified through all of this!  Praying for healing!

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!