Surgery Was A Success

I’ve tried to figure out how to type this post all day.  The short version is that surgery was a success yesterday.  Charlie spent about 9 hours out of his room from start to finish and tolerated going on and off heart bypass without much trouble.  The doctor was even able to close the skin over his open sternum which minimizes the risk of infection (and keeps mom and dad from having to literally watch his beating heart through his chest cavity).

Ultimately, I’ve decided the best way to share Charlie’s story is to share our FaceBook posts from the day.  So here they are….

Post #1

So many hearts are breaking now as they start the process to repair one. The anesthetist took Charlie back to the OR to prep for surgery.
Charlie is a strong, tough baby and will get through just fine. It is the time between then and now that is painful for us all.

Post #2

Just received welcomed but scary news: Charlie is successfully on heart and lung bypass and the surgeons have started to dissect his heart.

"Dissect his heart": Those are words I never thought I'd type outside of biology class in high school. Now I type them in reference to my own child with the faith that we'll be able to type them at least two more times in the future.

Right now all is well in Charlie's world, yet it feels like our world is being turned upside down.

Post #3

2:15 update... Just over 4 hours since leaving his NICU room, Charlie remains stable on both heart and lung bypass. His heart has been dissected and they are still in the process of using a graft to enlarge his aorta. This is the longest and most critical part of the surgery. The medical team was hopeful that they would complete this within the next hour and begin warming the room in preparation for eventually taking our little man off bypass.

Please continue to pray for God to steady the hands of the surgeon and for Charlie's heart and lungs to tolerate coming off bypass and working on their own again.

Post #4

3:15 update - 5 hours in they have completed Charlie's repair! They have basically rerouted his entire bloodstream out of his heart and are now double checking everything with an echo. Assuming Dr. Huddleston is happy with his work, they'll begin the meds necessary to wean him off heart/lung bypass.

We're now in a waiting game to see how much blood "leaks and oozes" around his stitches and how Charlie tolerates regaining control of his heart and lungs. This is a big step! Dr. Huddleston told us weeks ago that this would be Charlie's first big test post-op.

Pray that our little fighter passes this first hurdle with flying colors!

Post #5

4:15 update - I'm happy to report that we just met with Dr. Huddleston and Charlie's surgery is officially complete. Charlie handled coming off bypass like a champ! He'll remain on a ventilator until his breast bone is closed up with a second operation (hopefully Friday).

The next 24 hours are critical. It's complicated to explain, but the gist of it is that over the past several months in utero and the last 6 days in the NICU, Charlie's body has learned to function with a malfunctioning heart. Now he has to learn to pump a heart that has entirely different plumbing.

There is still a long road ahead - but we've officially survived the first part of the journey.

Thank you for your prayers over the past few months, today, and in the months to come!

Post #6

Vitals are promising. Oxygen saturation is at 75% and the ventilator was reduced to 80% oxygen mixture. Heart rate and blood pressure are normal.

Celebrate the small victories. He is not conscious and still oozing from the incision. It appears Charlie's body is recovering well. Two hours complete of the critical 24 hours. The marathon has begun and we are pacing with the pack.

Go Charlie!!! YEA!!!!

Post #7

So what does recovery look like?
11 IV solutions
9 sensors with 13 electrodes measuring
3 lines draining fluids
Ventilator ...

As an adult, when you start to run; first your heart beat gets stronger and then you heart rate increases. Because an infant heart does not have the size and muscle development, the only option Charlie has is to increase his heart rate. Along this marathon he is running, his heart rate is normal for an infant without a heart condition. The oxygen has been lowered to 60% and the saturation in the blood remains at 70%.

Charlie has the biggest heart. It may be due to the swelling after surgery, but it is his way of saying, "Thank you for cheering me on." Unlike a real marathon, this trek gets easier as you approach the finish. Keep running Charlie!!!!

Child of God

In an earlier post, I mentioned that Charlie is named after our dear friend and close confidant, Father Charles Latour.  We’ve known Father Charlie since for 12 years now and he has become more like family than a friend.  He presided over our wedding, baptized both our older boys, presided at the weddings of all our siblings and has counseled us more times than we care to admit.  He loves our family as though it is his own and has always made us feel as though we are the most important people on Earth to him.  In other words, he’s blessed our lives in more ways than we can count.

When we found out we were expecting back in December, Father Charlie was one of our first phone calls.  We needed to put a baptism on his calendar for Thanksgiving weekend in San Antonio.  (We like to tie our baptisms into family gathering holidays and have had the older boys baptized at Matt’s home parish where he grew up.) However, when we received Charlie’s diagnosis in April we knew we wouldn’t be comfortable postponing his baptism to a “convenient time” for family and friends.  He would certainly need to be baptized in the hospital before his first surgery.

Ironically, the day after Charlie’s diagnosis Matt was scheduled to be in New Orleans for a conference.  Father Charlie has been in New Orleans for a few years now as a high school principal and had already agreed to meet up with Matt for dinner on his first night in town.  What a counselor he proved to be that night!

That night he also promised us to be here to baptize Charlie in the hospital!  Even though we knew Charlie would be arriving the first week of school!  He didn’t want to miss the opportunity to baptize another one of our children – so he gave us his word that he would be on a plane as soon as we knew it was time. 

A long story to get to this point – yesterday afternoon Charlie officially celebrated the sacrament of baptism in the Roman Catholic Church in his NICU room with as many family and friends as we could wedge in without upsetting the nurses and doctors.  We even managed to have Charlie’s godfather, Leif, on FaceTime on the iPad so he could watch and participate long distance from New York (don’t you love modern technology?!?!?).

Here’s some quick highlights of our afternoon…

What a great day it was!

 

PS – Mom was originally released from the hospital on a day pass for the baptism because the resident doctor wasn’t comfortable discharging her without the attending’s consent, but (literally) on the way out the door we ran into Jean’s attending doctor who called the nurse’s cell phone and told her to hurry up and get us discharged!  The nurse even ran back to the room with us to help pack everything so that we could get to the baptism on time.  Just another sign that God was watching out for us yesterday!

Charlie Is Here!

So it turns out that Charlie is going to share his birthday with his Grandpa Rekowski!

Charles (Charlie) Andrew Garcia arrived at 3:57 am on Thursday, August 15th, 2013.  He weighed in at 8 lbs 4 oz and was 20.8 inches tall.  He  is remarkably pink in color for being a heart baby and has a solid set of lungs that have already done plenty of screaming.

The doctors started mom on Pitocin around 4pm on Wednesday.  Labor progressed as expected with only a few little blips along the way.  Charlie seemed rather finicky regarding what position Jean was laying in so she spent a lot of time rolling over to different sides and using the oxygen mask to make sure Charlie had enough oxygen even when his heart rate would slow down.  As with both of Jean’s other deliveries, the end of labor moved very quickly.  With Charlie the nurse checked her and we were told she was 5 or 5 1/2 cm.  Because of Jean’s past pregnancies the nurse said she would go ahead and call Dr. Vlastos to let him know he needed to head back to the hospital.  However, a mere 17 minutes later the resident on duty caught Charlie after they rushed Jean down the hallway to the operating room for delivery.  (Nothing like hearing one nurse yell at the next nurse – No!  We need to go now!) 

Charlie was delivered in the operating room and immediately taken to the resuscitation room.  There they cleaned him up, warmed him up, weighed and measured him and gave him a relatively clean bill of health.  He needed a few extra rounds of suctioning to clear his nose and mouth but did great in his transition to the real world!

Because he was doing so well, Mom got to hold Charlie before he was taken to the NICU and Dad got a few kisses on the forehead.  It was precious but short time!  Charlie then spent about 2 hours in St. Mary’s NICU getting his IVs set, having a few tests run, and getting some meds.  

Around 6am the transport team deemed that Charlie was stable enough for transport and brought him to our recovery room for one last peek before he headed off in the ambulance to Cardinal Glennon. It was by far the hardest part of the whole delivery!  He seemed so perfect in the eyes of Mom and Dad and when the transport and resuscitation team wheeled him it was a stark reminder of the long road that lies ahead of Charlie and how medically fragile he really is right now.

Charlie had some trouble in the ambulance with apnea which was most likely caused by all the meds he was placed on at birth.  The transport nurse said they did have to stir him a few times to remind him to breathe.  But overall the transport was uneventful and he settled into Cardinal Glennon pretty quickly. 

The staff at Cardinal Glennon tweaked meds, oxygen, IV lines, and ran loads of tests yesterday.  The cardiologist even FaceTime’d with us to give us an update after Charlie’s echocardiogram.  The neonatologists, cardiologists and respiratory therapists have decided that Charlie is stable enough to wait until next week for surgery.  They have scheduled a meeting for Monday with the cardiothoracic surgeon, cardiologists, neonatologists to go over Charlie’s case and schedule him for surgery. 

Short and condensed – he transitioned beautifully!  He’s doing great!  Mama is headed over to Cardinal Glennon on a day pass this afternoon to kiss that precious forehead!  And we’ve got a baptism scheduled for later today!

Oh yeah…don’t you ABSOLUTELY LOVE those photos above?!?!?!  Our friend June from Reflections by June Hallowell Photography came to the hospital with us and captured our whole journey.  How awesome is she?!?!?!?  Make sure to check out her other work at www.reflectionsbyjune.com

HOW BLESSED ARE WE?

Today Is The Day

Well, today is the day!  It’s already been a busy morning in the Garcia household.  John and Nathan headed off for their first day of preschool and I’ve finished packing those last minute items into the hospital bag.

Nathan did great with drop off so hopefully the rest of his preschool morning will go equally as well.  He located his locker and settled in at a table to work on writing his name.  Right at the end he was a little upset to see Grandpa Garcia go, but overall the transition went well. 

John was a pro!  He went right into his class, put away his stuff and wrote his name on his worksheet.  Aside from playing “master distractor” and trying to avoid having to do the rest of the worksheet – he was perfect. 

Everyone at school was asking about Charlie.  Friends, teachers, aides, staff….  Not much to report right now.  We’ll head to the hospital around 1:30 with a scheduled induction at 2pm.  We’re excited!  But for now, there isn’t much to share.  We are most definitely in a holding pattern until this afternoon.

The boys are excited about Charlie’s arrival too.  They have both been asking this morning if Charlie would be here when they get out of school.  Matt and I are hopeful we’ll be able to take them to meet Charlie at the hospital tomorrow if I can get discharged (or at least get a hall pass) myself.  We’d really like to be there as a family for 5 together.  If Charlie’s health doesn’t warrant waiting until mommy is free from the hospital, then Matt will take the boys on his own. 

The next few days will be a roller coaster of emotions and activity.  We appreciate all the prayers and well wishes we’ve already received this morning.  Know that they are pulling us through this tough time.  Everything seems to be up in the air so we’re flying by the seat of our pants.  Luckily we have plenty of people here to help us out right now and even more waiting on the sidelines to be called into the game. 

We’ll continue to post updates here and on Facebook.  Hopefully we’ll have a chance to snap a picture or two of Charlie before he gets rushed out the door to the ambulance….  Otherwise, you’ll have to wait for a picture from the pediatric hospital….

Soon

You can officially mark your calendar! If Charlie doesn’t arrive on his own before then, I’m scheduled to be induced on Wednesday, August 14 at 2pm. 

We’re excited!  We’re scared!  We’re happy!  We’re nervous!  Ummm…how many other emotions exist in the world….yeah, let’s just assume that most of those describe our current state of mind.

The upcoming 5 days will be pretty busy.  The boys have their first Saturday gymnastics class this weekend and we have a wedding to attend that afternoon.  On Monday John has speech in the morning and I have a prenatal bonding session in the afternoon (more on this in a later post).  Tuesday I have one last prenatal bonding session.  Matt’s parents arrive that evening so we’ll need to make an airport run at some point. 

Then there is Wednesday!  Wednesday is the boys first day of preschool.  Drop off is at 8am.  Pick up is at 10:30am.  John has the same teacher as last year.  He’ll be a breeze!  Nathan will be venturing into preschool for the first time.  I’m not worried about his transition, but I am worried about how the stress in our home life will impact him at school.  He’s a little more outgoing (read: aggressive) than John and I don’t want him lashing out in the first few weeks.

Immediately after school John has speech therapy.  He should wrap up around 11:45-ish.  Assuming the stars align – that means we should have enough time to eat lunch as a family before Matt and I head off to the hospital. 

Hopefully by Wednesday evening or Thursday morning we’ll have welcomed Charlie into this world!

After that most everything is up in the air except for an airport run to pick up Father Charlie on Thursday.  We’ll baptize Charlie on Thursday evening or Friday morning depending on how the medical stuff is going.

In the meantime, please pray for our growing family.  Pray that Charlie stays put until Wednesday so that the proper team can be available at the hospital during his delivery.  Pray that he arrives as healthy as can be and can sustain life until his first surgery.  Pray that we have the window of opportunity to allow Father Charlie to baptize his namesake just like he has baptized our our other boys.  Pray that mom and dad can remain strong for each other, for Charlie, and for our other boys. 

I know it’s a lot to ask – but any/all prayers are appreciated.

Things Are Getting Real

It’s amazing what a week can do to your mental state.  Last week I was in my “straighten the house, arrange for babysitters” state of mind.  This week I’ve moved into total panic.  My brain is screaming “NOTHING is ready for baby!” 

I spend a great deal of my day self-talking myself down from the ledge.  All will be fine.  If there are still clothes that need to be put away on the couch when Charlie arrives, it will be fine.  If the dining room table has some papers and toys on one end, it will be fine.  This too shall pass.  I know this.  But my brain still wants the whole world to be ordered before we bring a new baby into this world. 

At the same time, sleeping is getting tougher.  I’m waking up repeatedly to go to the bathroom.  And a few nights ago I had my first very real, very legit nightmare about Charlie’s arrival.  I woke up in a sweat with my heart racing.  It’s probably to be expected under the circumstances, but it messed with what little sleep I’m getting these days. 

Matt describes the situation as a giant roller coaster.  No matter how much people describe it’s twists and turns…no matter how much you think you’re ready…when that last car clicks loose of the chain at the top – there is no turning back.  And you have to experience it first hand to fully understand what others are talking about.

I simply describe it as being pushed off a cliff.

Not sure which is more appropriate….but I know that we’re as ready as we’re going to be…

Charlie Update (Week 36)

Charlie continues to thrive in utero.  That’s always the most important.  At 35 weeks we had our last appointment with the cardiologist until Charlie arrives.  Dr. Peterson was very happy with Charlie’s state.  There didn’t appear to be any valves leaking in his heart and she couldn’t identify any fluid build-up around the heart (a sign of heart stress/failure).  The only lousy news from the cardiologist is that it appears that Charlie’s ventricular septal defect (VSD) is probably getting smaller.  In a regular situation – doctors would literally be rejoicing and celebrating!  In Charlie’s situation it creates an environment where his blood flow to the body will be even more limited than it is already.  The good news in all this is that the doctors know about his defects ahead of time and he will be given drugs immediately upon birth to keep his blood flow as stable as possible.

At the last doctor’s appointment there also seemed to be some discrepancy in how much Charlie weighs…a few weeks ago we were told he measured 6 lbs 9 oz, but at week 35 he measured 5 lbs 13 oz.  My OB certainly doesn’t think Charlie is losing weight – it’s most likely user error in the measuring.  Either way he’s over the 5 lb mark which is vital.  And he still has a few more weeks to go! 

Mom is doing well too.  I’ve no signs of pre-term labor.  Contractions are occasional and mild but I’m not progressing at all.  I’ve got very little swelling (no cankles here!) and aside from feeling big, pregnant and hot during the summer…all is good.

The current plan (subject to change at any moment) is to induce in week 38.  We don’t want Charlie to have any distress in the womb.  Plus everyone is trying to control the uncontrollable by having the doctors who have been working with us at the delivery.   So it would be ideal if Charlie was born between M-F, 8-5 on a day that Dr. Vlastos is available to assist with delivery and with a long enough labor window for the Cardinal Glennon team to arrive at St. Mary’s Hospital prior to Charlie actually being born.  Anyone who has kids knows that this is like asking for every star in the universe to align….Kids are never this predictable. 

Please continue to pray for us as we navigate this process.  We’re excited to welcome Charlie into the world, but also battling the feeling that his arrival will feel much like being pushed off a cliff.  Fear of the unknown seems to be the worst….