Our First Update From Home

Charlie seems to be settling into his new home pretty well.
He has increased his feeds even more since leaving the hospital; he has fairly consistently taken 80-90 mL each time today. We're still fortifying his breast milk to make sure he's getting enough calories...but if his intake continues to stay around 80 mL per feed, we'll be able to drop that soon.

Charlie's home nurse came by today as well. She was happy with Charlie's vitals and stats, but did bring to our attention that we managed to get out of the hospital without Charlie's first vaccine. She's looking into it so that we can resolve that issue sooner than later. Charlie will have home health every other day for several weeks, then we'll re-evaluate his needs.

Little man also had his first at-home bath. Like most kiddos...he didn't really enjoy it. But his greasy, well-petted hair is now soft and clean once again.

Our only bump in the road since coming home has been the portable pulse oximeter. It's extremely finicky and the sensor only wants to work half the time. The result being that it beeps at us almost incessantly. Twice last night we administered oxygen to Charlie because the meter would not stop alarming. Neither time did we feel like Charlie's saturations were in a critical place, but we couldn't stop the alarm or in good conscience ignore it.

Pray that our uneventful weekend continues...it's the way we like it around here....

Welcome to the Outside World

On July 18th we were told by our son's medical team that "if every single star in the universe aligned perfectly, which they *never* do, you could take Charlie home in as little as 14 days" but that 21-28 days was closer to the average stay for babies with heart issues as complex as Charlie's.

I'm EXTREMELY OVERJOYED to report that just 15 DAYS after his arrival into the world....

WE ARE ON OUR WAY HOME!!!!

See that world whizzing by, little man?

IT’S ALL YOURS!

What A Difference Two Weeks Makes!

Late Night Update

Charlie made progress on his feeds today. He's increased the volume per feed which has made the nutritionist and cardiologist happier with his status. Mom and dad have received training on hooking up and reading a hospital grade pulse oximeter, inserting an infant cannula, and administering oxygen as needed. We've also now possess portable oxygen tanks, non-portable oxygen tanks and a oxygen condenser. Home nursing care has also been arranged as has an early intervention screening. The doctors ran some additional labs today and because Charlie's differentials came back normal the concern about his elevated white blood cell count has diminished.
Charlie is down to just his PICC line, pulse-ox, and monitor wires at this point. He's starting to look like a baby! At home he'll only have the pulse-ox still hooked up.

Dr. Huddleston rounded this evening again and said that if Charlie has an uneventful night that we will be discharged tomorrow!

So what did we do tonight to celebrate? We scrambled to clean up Charlie's room and move stuff around at home so we can accommodate all his equipment.

Pray for a night of good feeds, good labs, and good heart rhythms.

Maybe, Just Maybe

Early morning update:
Charlie's surgeon, Dr. Huddleston, has already been in for rounds this morning. He's very happy with Charlie's progress in feeding (took all 60 mL for each feeding last night) but would be happier if Charlie would wake up hungry on his own every three or so hours. This is a skill Charlie will have to learn - because of the IV nutrition and the continuous feeds through his NG tube during the first 12 days of his life - he's never actually figured out what it means to be hungry - he just assumes that food drips continuously into one's body....

Dr. Huddleston also said that Charlie's surgical scars look like they are healing appropriately. Unfortunately, Charlie's labs showed a slightly elevated white blood cell count which can be a sign of infection. He also ran a little bit of a fever last night although the nurse thought it was environmental because he was clothed and swaddled. They'll be monitoring that closely today and he's already been down to radiology for an x-ray to rule out pneumonia which is common in kiddos that have been intubated.

There is potential for us to be able to take Charlie home today. We will have a better idea as the day progresses. I'm trying not to get my hopes up for fear of them being crushed later on. But everyone agrees that we're skating close to that line where he becomes more at risk for infection IN the hospital than he would be OUT of the hospital.

Please pray that his white blood cell count drops a little today. Also, pray that all the equipment we need arrives and training can get accomplished. All those will add up to us being right on the cusp of bringing our little man home....

Pray, pray, pray....we're ready!

A Long Checklist

Charlie is still working at perfecting his bottle feeding. He has mastered the "suck, swallow, breathe" aspect but he wears out quickly. He is currently taking between 50-60 mL per feeding but his caloric needs are closer to 75-85 mL per feed. He's got to prove that he can handle the feedings and gain weight in order to be discharged. On that note, the OT said tomorrow mama can try to put Charlie ...to the breast for the first time to see if that entices him at all.

Charlie also successfully passed his hearing test in both ears, had an echocardiogram, and an EKG. Tonight he will attempt to pass his car seat challenge test, where he has to sit in his car seat for 30 minutes without having breathing, oxygen or heart problems (this insures he can tolerate the ride home).

Mom and dad checked CPR off the checklist (yay for already being certified!) and scheduled the arrival of oxygen tanks, an oximeter, an apnea monitor and home health care. Tomorrow will be a day of learning how to use all of the above.

Charlie is getting so close to coming home! There have been times in the past few months since his diagnosis that we wondered if we'd ever see this day...now we feel like we can see the light at the end of the tunnel.

Happy Birthday Mommy!

Charlie has had a wonderful 24 hours! In the middle of the night the doctor removed Charlie's arterial line. He still has his PICC line (long term IV) and a standard IV but they are no longer running any continuous drips. His heart monitors will remain hooked up until discharge.

He also had two gavage feedings through his NG tube of breast milk. The OT cleared him to start bottle feeding and he ...has rocked out two bottles of increasing amounts since lunch! If he keeps it up we will be able to take out the NG tube before we leave the hospital...

And as a special birthday present to mommy - Charlie got moved out of the PICU to the TCU (transitional care unit). This is his last stop before coming home! Over the upcoming days the hospital staff will train Matt and me on how to care for a medically fragile baby. Once they determine that we have a grip on Charlie's care we will be discharged!!!

Pray that Charlie continues to tolerate his feedings and raises his caloric intake. And please pray that Matt and I can get through our training with few bumps so that we can get to the business of being a family of five at home!

Small Successes = Big Triumphs

We have made lots of little strides towards getting out of the PICU today. This morning Charlie had his last RA line removed and his chest tube drain pulled. Right before lunch they took him completely off of his cannula (pushed air) so he is now breathing 100% on his own! And the doctors turned off the medicine that helps his heart function - so now his heart is 100% on it's own!

He also passed his swallow test this afternoon meaning that he can now take tiny bits of breast milk by bottle (no more than 1/2 ounce). By 6pm the IV nutrients will be completely off as will the lipids which is basically pre-digested fats. So his food will be strictly provided by mama (via the NG tube running through his nose).

Really, at this point the only thing between Charlie and the Transitional Care Unit (TCU) is one last arterial line and about 12 hours. The art line has to come out for him to be released from PICU and the docs like to keep kiddos around for several hours following the removal to watch for bleeding and monitor vitals.

Today has been a GREAT day! Lots of little steps along a very long journey. But it is the small successes that add up to big triumphs.

Back To Making Progress

Today has been a day of progress! Charlie had his pacemaker wires removed (they were strictly precautionary and never fired), removed an arterial line and took out his catheter. They also changed his dressing on his chest wound. His sedative has been dropped significantly, making him much more irritable. He writhes in pain, squints up his face and opens his mouth as though to cry but the tubes down his throat prevent any noise from coming out. It's tough to watch as a mama.

However...his meds and vent have been weaned to a level that he can be taken off the breathing tube. The respiratory team just came in and prepped for him to have extra pushed oxygen as needed. So hopefully we're close to being extubated!

Please pray that once the vent goes off and the tube comes out that Charlie's lungs respond appropriately. Pray that the medical team can help him make this transition and we can hear our baby cry again for the first time in almost a week....

Update: Charlie was extubated this afternoon.  The team decided he would need some continued support so he’s on a high flow cannula (pushing oxygen through his nose).  He did well with the transition, only having one major drop in his oxygen saturations.  There were a few other small drops while he figured out how to breathe through his nose for the first time in a week.

Doesn’t he look great without that big ventilator tube down his throat?

Superstar Stalled…

Charlie isn't quite the superstar today that he was yesterday. The process of weaning the ventilator is hard on his little body. Yesterday they had him on room air with the vent doing the breathing. Today they are trying to get Charlie to do some of the breathing for himself. However, this has required the nurses to turn his oxygen back on. His breaths per minute aren't where they need to be...The new goal is to get him extubated tomorrow sometime. Plus, weaning his sedation/pain meds is leaving him a little uncomfortable which also alters one's breathing pattern.

They have managed to wean his calcium drip and his lipids (pretty much pre-digested foods/fats). And his breast milk feedings have increased to 5 mL per hour.

Today feels like a few steps forward, a few steps back. Progress is progress, but we were hoping our smooth sailing from the past few days would have continued. It's a tricky, delicate balance that the docs are trying to find. We don't want to stress his heart in this process, but its tough to not want to scoop him up and run out of the hospital with him in our arms...

Pray that Charlie's lungs begin to respond better to the ventilator and that the docs can find the best recipe for weaning his meds, vent and IVs over the next few days so as to continue making progress without taxing his body too much.

He’s Not Acting Like A Norwood

Charlie continues to impress the doctors and nurses! His vitals have remained stable since his chest closure this morning, the surgeon stopped by and said things looked "great." The PA just popped in to check on him and stated that "everyone keeps saying that he's not acting like a Norwood" (which in this case is a VERY GOOD thing!).

If things continue to progress today, the staff will begin weaning him from his ventilator late tonight/tomorrow morning and hopefully extubate him sometime tomorrow! And - as an added bonus for being such a good boy in the PICU - the PA said we might even be able to start giving him a teeny, tiny amount of breast milk tomorrow...his first feeding since being born!

The Completion of Surgery #1

Charlie heads back to the OR today for his sternum and chest closure. It's crazy to say this surgery is minor, but it seems so small compared to Wednesday. While he's under anesthesia they'll remove one arterial line and place a new one (the new location will minimize the risk of infection).

Again we find ourselves in a holding pattern though. Hurry up and wait appears to be our norm. That being... said, the precious little girl next door who had open heart surgery yesterday hasn't had the same "first 24 hours" as Charlie. The surgeon has been paged to the bedside several times and around 4am chose to open her chest back up in the room. Again, we're blessed that our surgery is planned.

Please pray for Charlie as he undergoes his second surgery at 8 days old and for the girl next door that God may heal her and comfort her parents in this trying time.

Update:  The surgeon has come out to talk to us. The sternum and chest closure went well and Charlie's heart looked as expected. The OR team is trying to run Charlie's new arterial line now. After that we'll still have another 30 minutes or so until they get him settled in his room with all his meds and his ventilator. The surgeon's recommendation is to start weaning the ventilator late tonight.

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.