"I love you and want for you all things that make you happiest; and I guess you, not I, are the one who knows best what those things are."

Saturday, October 26, 2013

We Know It Is Coming

I'd be lying if I said I wasn't nervous about Monday's cardiology appointment. We're hopeful that Charlie's aortic narrowing has slowed, but realistically that is unlikely. We're in a race with the clock right now. The longer we can hold off doing a cath to repair Charlie's coarctation the less likely we'll have to do a second cath to prep for his next surgery, the Glenn.

Charlie seems to be doing well, but there is no denying that his saturations are starting to drop a little. While this is expected t's just a question of whether the coarctation is the cause or if it's time for his Glenn. Luckily his body seems to be keeping up with everything at this point and we haven't had to bust out the oxygen very often.

I fully understand that Charlie will have a cardiac cath in the upcoming months, another one before his third surgery, and probably more in the years following - but from a mom's standpoint - each one that we don't have to do is fine with me. Not that we'd ever put Charlie at risk to avoid the procedure...

Bottom line is that we know the next steps are approaching. In the near future we will be scheduling procedures and surgeries. It is so hard to look at our precious boy and know what lies ahead for him. He seems so healthy and happy on the outside, yet we know that his body is struggling so much on the inside...

Friday, October 25, 2013

Germs, Germs, Go Away

So cold #2 is creeping into our house. Everyone seems to have either a runny nose or sore throat (or both). Charlie is just starting to get a runny nose so tonight we gave him a nice warm shower and rubbed some essential oils on his chest. The humidifier is currently running in the bedroom to get the air moist before we tuck him into bed. We'd really like to cut this off at the pass if possible.

We continue the transition from bottle to breastfeeding. However, Charlie's weight gain has slowed significantly in the past week as we've limited his bottles. *sigh* We will keep on tweaking the process as we go, trying to find the right balance of nursing/bottle feeding for our little man.

This week we did catch a crucial issue with our insurance. Our pediatrician submitted paperwork for Charlie to get his RSV shots this winter over a month ago. In fact, the doctor has a letter from our insurance confirming receipt of the request and stating that it was under review. However, shots should start next week and we haven't heard back. When I called Charlie's case manager we realized that the paperwork has gotten lost in the shuffle somewhere. So on Thursday this week our pediatrician resubmitted all the paperwork directly to our case manager. The case manager said she was going to try to expedite the approval so that we don't put Charlie at risk while navigating red tape...

Again - it's all a delicate balance. Trying to avoid germs is next to impossible this time of year - yet, it's vital for Charlie. We need him to continue to gain weight, but would prefer for him to do so without the need of the extra calories in the fortified milk. We need to get shots for him, but need insurance approval first.

Let's hope this all sorts itself out in the next week or so!

PS - our friends delivered a BEAUTIFUL baby girl, Caroline, on Wednesday! Caroline had a cardiac cath with a balloon angioplasty less than 18 hours after her arrival but is doing wonderful and it looks like she has avoided open heart surgery for the moment. God is good! Thanks for the prayers!

Tuesday, October 22, 2013

Another Warrior On The Way

I'm calling on my prayer warriors today...some of our college friends are being induced today and are delivering a heart baby! Their precious Caroline was blessed to have a successful fetal cardiac intervention aimed at preventing her from needing the three surgeries Charlie is undergoing. Now they have to wait and see how Caroline's heart responds to life on the outside. It's a time of great uncertainty and anxiety for everyone involved.

Please pray that the delivery goes smoothly and Caroline's heart responds favorably after birth. Also, pray that God guides the hearts and minds of the medical team as they care for Caroline and her mom, Ellen.

Good luck Ellen and Ryan!
We're praying for all three of you!
Heart hugs!

Monday, October 21, 2013

Growing and Grooving

13 lbs! That's how much Charlie weighed at his most recent nursing appointment! Most heart babies don't see 13 lbs until well after their 2nd surgery, so Charlie continues to defy all the odds.

Our little (big?) man is also meeting some "normal" baby milestones. We now have social smiles, cooing, and more awake time in this house. I'm loving it!

There are times it's hard to believe that Charlie has been home for 7 weeks! We've been blessed with few complications along this road. Aside from a scar running down his chest and some slightly bluish lips you'd never know that Charlie has already been through more than most of us will see in our lifetime.

We have a pretty good morning and evening routine going now. In fact, this weekend was the first time we've missed a dose of his medicine. It sent mom and dad into a bit of a panic (one med regulates the electrical signals in Charlie's heart), but a quick call to the cardiologist put us at ease and we adjusted doses according to recommendations.

Charlie is growing and thriving! Next week were back at the cardiologist for another echo and consult. Pray that things continue to go smoothly!

Tuesday, October 15, 2013

Spreading Out Our Appointments

Charlie's cold is subsiding. He still has a little cough, but the runny nose is a thing of the past. Plus, he's finally able to eat without gagging on snot and struggling to breathe.

The cold has put a damper on his nursing, but we're going to give it a try again this week. Since he's feeling better he's been putting on weight again so we have the all clear from the doctor to give it a try.

Today Charlie had a pediatrician appointment. He was 24 in tall (90%) and weighed 12 lbs 12 oz (70%). The pediatrician would like his weight closer to the 85% but was happy that Charlie is starting to catch his weight up to his height. We're headed in the right direction!

Charlie got 4 shots today at his appointment. Boo! While he did let out a good scream during the shots - he quickly settled down with a smug look of displeasure mixed with bring it on. The biggest issue of the day was getting the bleeding from all the shots to stop! With all the aspirin in Charlie's system he tends to bleed more than other babies during shots.

Overall a good report! We see the nurse on Friday, the cardiologist in two weeks and the pediatrician in...wait for it...wait for it...2 months!!!!

Appointments are spreading out a little - that's a great sign!

Saturday, October 12, 2013

Cautiously Watch and Wait

The last few days have been a bit of a struggle. Charlie seems to have caught his first cold. He's got a runny nose and a nasty cough. He's been pretty miserable.

Thursday we called the pediatrician's office to see if there was anything additional we needed to do. Unfortunately, Charlie's doctor was off for the day so we spoke with the triage nurse. Frankly, she pretty much freaked out when I  told her his O2 sats were in the low 70's despite my explanation that this was not entirely unusual for Charlie given his circumstances. I think she was ready to send an ambulance to our doorstep.

I ended up calling the cardiologist for advice. Ultimately we decided to cautiously watch and wait. (This phrase seems to haunt me!) If we would have taken him to the ER they would have admitted him immediately, but they would do the same thing we were doing. Checking his sats, encouraging him to cough, watching for dehydration, and let him rest. And as everyone knows - a hospital is NOT a good place to rest!

The nurse came out yesterday and did a very diligent evaluation of Charlie. He only gained 2 oz over three days which is not very much for our champion eater. So it's clear that his body is burning extra calories with labored breathing and lots of coughing. Plus he's not eating quite as well since he's so congested. She said his lungs continue to sound clear so his coughing is working and he's keeping up with the drainage for now. If the coughing doesn't keep up and the fluid drains into Charlie's chest we'll have a one-way ticket to the hospital.

There has been a tense feeling around the house the last few days. While we certainly didn't think we would avoid all of cold and flu season, it's come a little early for our liking. We are constantly discussing his color, saturations, eating, coughing, breathing, etc. Mom and Dad are on pins and needles...

Oh yeah, then yesterday our big boys came home with a letter saying they may have been exposed to chicken pox at preschool. Because that's what you like to hear when you regularly take your immune-suppressed baby who hasn't been vaccinated yet into the preschool classrooms. Our pediatrician thinks he'll be fine with mommy's immunity from the womb, but it is another thing to watch cautiously.

Please pray that our little man keeps having a forceful enough cough to clear the mucous out and that he doesn't somehow end up with chicken pox. And prayers for mom and dad's peace of mind would be appreciated too...See More

Wednesday, October 9, 2013

Early Intervention

Yesterday Charlie spent the afternoon with a team of therapists. Since he has such a complex heart condition he automatically qualifies for certain therapies through the State of Illinois' Early Intervention program. The group assessed Charlie for about 30 min and we talked extensively about his status, past and present.

Charlie will have occupational therapy twice a month. The OT will work on feeding and some fine motor skills. She'll also help with sensory integration skills and coping mechanisms for unpleasant times.

He'll also have physical therapy once a month. The PT is primarily looking to increase Charlie's strength and endurance. She will also assist with some positioning activities since Charlie favors lying on his left side and we don't want to develop a flat spot or muscle weakness from not using both sides equally.

We're taking every little bit of help we can get for Charlie. He's a fighter, but we know there are still hurdles to overcome. An extra coach here or there along the way can't hurt...See More

Monday, October 7, 2013

The Good and The Bad

We have good news and bad news after another afternoon spent at Cardinal Glennon's Dallas Heart Center with Charlie. He had an echocardiogram of his heart and met with his cardiologist, Dr. Peterson.

On a high note, the valves in Charlie's heart are not showing as much leakage as they were 3 weeks ago. It is most likely a combination of the new meds he is on, Charlie getting a little bigger, and being further out post-op. Less leakage means that there is less pressure built up in inappropriate locations in his heart, so this is a positive all around!

Equally as exciting was Charlie's growth. He has rebounded back up to the 62% in weight (he had dropped to the 55%) by putting n over 2 lbs in the last 3 weeks. He's 12 lbs 4 oz now. His surgeon's preference is to do the Glenn on babies over 12 lbs - so we can check that goal off the to-do list! Now we won't risk having to "wait" on the surgery until Charlie is "big enough" (we wouldn't really wait - but they would proceed much more cautiously if he wasn't such a stocky boy). And with the improved weight gain came the OK to nurse up to 4 times a day! That's half of Charlie's feedings!!!

However, we did encounter some issues with Charlie's heart. His aorta continues to narrow. The cardiologist and echo tech were able to get some great pictures today (thank you Charlie for being still and pleasant during your tests!) which allowed Dr. Peterson to get a good look at the aorta. The narrowing is located at the end of the Charlie's surgical site. It is most likely a combination of scar tissue and build up from where the stitches have been. Right now his pulses remain pretty strong which is a good sign. His single ventricle isn't showing signs of distress from pumping against a small blockage. However, the nature of the beast is that it's slowly restricting the flow of blood out to the body.

Dr. Peterson and I spoke at great length about Charlie's cyanotic (blue) episode on Saturday. We went over saturations, activities, breathing patterns, course of action, results, and more. It's very likely that Charlie is simply struggling just a little to pass blood through that narrow aorta. Over the course of time - it caught up with him causing him to turn a little dusky and struggle breathing. We certainly don't want this to continue as a trend. We're under strict instructions to call the office any time we administer oxygen and to carefully monitor his blood sats over the next few weeks. She also reminded us that we may be practically quarantined during these germy months in an attempt to keep Charlie as sheltered as possible. Colds and congestion are not going to be our friends....

The answer to the narrowing aorta is to either balloon it open or place a stent in it. Both of these can be accomplished through a cardiac cath and the course of action would be determined once the cardiologist could see everything "live" during the procedure. Dr. Peterson would still like to make it to that 4-6 month window before we have to do the cath. But we also don't want to get tripped up on time frames when something needs to be done.

The battle plan for right now is to cautiously watch and wait. We return in 3 weeks for another echo and consult.

Dallas Heart Center Happy Echo

Sunday, October 6, 2013

Hmmm…

Last night Charlie slept for a 7 hour stretch! Normally we would rejoice, but that's VERY out of character for him. He normally only sleeps a 3-4 hour stretch so we're pretty sure he wasn't feeling well. We opted to let him sleep so as to give his body time to heal on it's own from whatever was bothering him.

Today was better than last night night, but Charlie still isn't himself. He has been fussy most of the day again and has pretty much insisted on being held. The good news is that his saturations have remained pretty consistent. We haven't had to use oxygen, but we've been watching him closely.

We're grateful that Charlie has a cardiology appointment tomorrow. It will give us a chance to let them know we've had to administer oxygen. Plus the doctor will listen to his chest and read Charlie's echo to make sure there isn't anything going on that we can't see...

Prayers for a good appointment tomorrow!

Saturday, October 5, 2013

Busy Busy

What a day!

Charlie's oldest brother turned 5 today. We celebrated by eating John's favorite meal over at grandma and grandpa's house: shrimp, pork steaks, roasted broccoli, sweet carrots and chocolate cake. This is a 5 year old food snob!

Our MOMS Club sponsored a bake sale benefitting Charlie today too! Charlie spent a few hours there smiling (ok - sleeping) at the patrons. We had a chance to meet and visit with a heart transplant recipient who happened by the table. It was wonderful to talk with him and hear his story. It was an awesome happenstance. We honestly can't believe how blessed we've been in this journey. Our friends, family and more than a few strangers have more than stepped up to the plate! I was in tears as I left today.

Tonight was a little rough for Charlie. He's been a tad bit "dusky" and pale the last two days. This evening he was inconsolable and irritable. His eating has been erratic (at best) today. He just didn't seem himself.

When we checked his saturations he was only in the high 60's and his heart rate was higher than it has been in three weeks. Since he had been fussy most the evening this wasn't a huge surprise (he typically desaturates when he's crying). After trying a few things to get his sats up on their own (a.k.a. resolve the fussiness: pain meds, gas meds, bottle, burping) - We resorted to administering oxygen. His pink color came back quickly and his saturations s-l-o-w-l-y came back up to the low 80's. It took nearly an hour and half to get his heart rate back down to a "almost normal" pace.

Charlie is sleeping peacefully in his bassinet now. We'll continue to monitor him throughout the night as he wakes up to eat and tomorrow throughout the day.

Monday is our next cardiology appointment and another echo. We're hoping that the valves in Charlie's heart have slowed (maybe stopped) their leaking and that his aorta shows no further signs or narrowing. If those things happen we should get a full month before we have to return to the cardiologist! And it means we most likely won't have to schedule Charlie's cardiac cath until December or even January.

Prayers that tonight was just a fluke occurrence and Monday yields good results are appreciated!

Thursday, October 3, 2013

My Charlie

No real medical updates to share (although Charlie is a 1/2 oz from breaking that 12 lb mark) so I thought I'd share less important but more fun stuff....

Things Charlie dislikes:
1. Hiccups. Apparently having your chest lurch uncontrollably after it has been wired shut is unpleasant.
2. The 5 min or so it takes to warm a bottle. Once he sees it...it better be ready for consumption.
3. The smell of hand sanitizer. I'm guessing he's been conditioned to think something unpleasant is about to happen when someone uses it in his proximity.
4. Motionless vehicles. If he's going to be strapped in a car seat - it had better be moving. Red lights are unacceptable in Charlie's world.
5. Mommy pumping. Just assume if the pump is running, Charlie is fussing.
6. Being without his monkey (which is attached to his paci). It should be in his fist at all times regardless of being awake or asleep...proof is in the picture...

Paci Pic

Sunday, September 29, 2013

Welcome to the Church!

On August 16, approximately 33 hours after his arrival, Charlie was baptized in Cardinal Glennon's NICU by our long time family friend, Father Charles Latour. It was a special and blessed day.

Today we were able to conclude Charlie's baptismal rite with Father John Beveridge at our home parish of Saints Peter and Paul. Charlie was presented and accepted into our parish and Church and "officially" received the light of Christ through his baptism candle.
Charlie's godparents were both present (we didn't have to FaceTime anyone in) and he got to wear a beautiful white suit.

Our parish has been so supportive throughout Charlie's journey. From prayers to financial support, babysitting to grocery shopping, providing clothes and assisting with life insurance - they have always been there to help. It felt so fitting to share him with the congregation and ask for their continued support in raising him in the Catholic faith.

Here's a picture from this morning! What a great day!!!

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(Nathan is hiding somewhere behind us by the altar)

Friday, September 27, 2013

Sick Brother

Charlie continues to gain weight. Today he weighed in at 11 lbs 7.5 oz.

Weight gain is essential for Charlie. First, because of the anatomy of his heart he naturally burns more calories than most babies simply because his heart has to work harder to circulate blood. Second, Charlie needs to continue putting on weight to be able to better tolerate his second surgery, the Glenn. Typically the goal weight for the Glenn is 14-16 lbs.

Like everything in Charlie's world weight gain is a delicate balancing act. One of two things will happen in the future... If he continues to grow and thrive - we may be able to postpone the second surgery for a little while especially if his oxygen saturations remain relatively high. On the other hand, if he continues to grow and put on weight at this quick rate - his heart may not be able keep up with the growth and we may have to do the Glenn earlier than expected if his heart starts to struggle.

This morning his home nurse removed his last suture. He had one hanging on in his belly button that wouldn't dissolve. It had begun to get red and inflamed the past few days. Since it was stitched up after they removed umbilical catheters (IVs through his umbilical cord) it is naturally close to his blood line. Obviously the last thing we need is an infection in his blood stream so it was time to remove it. Charlie did great and his belly button immediately went from an "outie" to an "innie" once the stitch was out!

The only thing we're watching with Charlie this weekend is his brother. Our middle son, Nathan, has been running a fever, coughing and hacking, and generally not feeling well. Nathan is off to the pediatrician later today and we're trying to keep him at a distance from Charlie. However, Nathan loves Charlie immensely and it's hard to explain Charlie's immune-compromised state to a 3 year old. We just keep telling Nathan that if Charlie gets sick he'll have to go back in the hospital....

Today we would appreciate some prayers for Nathan. He's ready to be back at school, back to playing and back to feeling better. Plus - we want him healthy because on Sunday we're finishing up Charlie's baptismal rite at church! Yay!

Tuesday, September 24, 2013

The Norwood

What is the Norwood Procedure?
On his 6th day of life, Charlie underwent his first open heart surgery. The procedure performed was a modified Norwood with a Blalock-Taussig shunt. It is the first of three staged surgeries designed to help Charlie's heart function.

The most urgent problem with Charlie's birth heart was that the heart was unable to adequately pump blood to the to the body (systemic circulation). The goal of the Norwood procedure is to connect the single ventricle to the systemic circulation. To accomplish this, blood flow to the lungs is disrupted, and therefore an alternative path must be created to supply the lungs.

The heart is accessed through the sternum and Charlie was placed on complete heart and lung bypass throughout the duration of the procedure. The surgery can be broken down into two main components.

Providing Increased Circulation to the Body
In order to convert Charlie's left ventricle into the main pumping chamber the lower portion of the pulmonary artery was separated from the left and right portions of the pulmonary artery and joined with the aorta. This allows the blood, a mixture of oxygenated and deoxygenated, to be pumped to the body via the left ventricle through Charlie's pulmonary valve. The aorta was widened using a Gor-Tex graft to allow for greater blood flow out to the body.

Providing Alternative Circulation to the Lungs
Since the remainder of the pulmonary artery was disconnected from the heart a modified Blalock-Taussig Shunt (a kind of plastic tubing much like a straw) was used to connect the subclavian artery to the pulmonary artery. In Charlie's case, blood comes from the left ventricle, through the pulmonary valve, the reconstructed aorta, the subclavian artery, and the shunt, to the lungs.

Charlie - Norwood

The first successful Norwood procedure was performed in 1981. In the world of medicine it's still considered a fairly new procedure. While no one can tell us if Charlie will live to be 60, 70, or 80 having had this operation - they can tell us that some kids have graduated college and started successful careers.... And given the alternative, we'll take that!

Monday, September 23, 2013

FCI & NICU Reunion

This weekend has been filled with family activities! Charlie's grandparents watched him on Saturday so that the big boys could go to the ItalianFest parade with mom and dad. Everyone seemed to enjoy the time including great-grandma who got to feed Charlie a bottle that afternoon.

Then yesterday we packed up the whole family and headed to Laclede Park at St. Louis University. We had a great time celebrating our little Charlie at the Fetal Care Institute's and Cardinal Glennon NICU's annual reunion. They had an awesome set up complete with a picnic lunch, photo booths, face painting, storytelling and more. We had a chance to see several of Charlie's nurses and even saw the Rally Squirrel. We also spent some time catching up with my high-risk OB and the sonographer who saw Charlie weekly for nearly 4 months! Everyone was so impressed at how well he was doing, how much weight he had gained, how great his scar looked, etc.... It's so reassuring to know that the doctors and nurses think he's doing as well as mom and dad think he is doing!

Today was another nursing visit. I'm happy to report that we've broken the 11 lb mark! Charlie's heart rate was around 140 which is a little low for him, but still in the normal range. We'll continue to monitor it with the ever-so-finicky pulse-ox meter to make sure it is not dropping too much. His digoxin (heart med) slows the heart rate down so we'll need to be cautious when we administer that particular med.

Overall, we continue to thrive and we're slowly but surely getting out and about. As cold and flu season kick in we'll be somewhat quarantined due to Charlie's weakened immune system and lousy oxygen levels - so we're trying to spend a little time around the community now.

Tuesday, September 17, 2013

Progress is Progress

"Progress is progress" is our motto around here. Some days we can see that Charlie has made loads of progress. Other days it is slow moving - two steps forward, one step back - kind of progress.

The past few days have been funky when it comes to Charlie's eating habits. He refused the bottle a few times, skipped a couple feedings all together, and has been particularly pokey when it comes to eating. Last night (with the permission of the cardiologist) we let Charlie lead the way on his nighttime feedings. He slept one slightly longer stretch of about 4.5 hours. He polished off all his nighttime feedings after that and has consistently eaten every 3 hours all day. Yay! Maybe that one longer stretch helped even things out a little.... Plus we're trying to move him up to a larger size nipple on his bottle so he won't have to work as hard to eat (meaning he'll burn less calories and hopefully put on more weight).

Charlie started his new medicine today. We'll need to wait a few weeks to see how it works in regards to the leakage around his valves. It's good to know that we are on the road to addressing the issue though. Blood work and his echo in three weeks will tell us his progress on that front. Hopefully it works miracles!

Also by way of progress - we managed to get out of the house for a bit today. The older boys had an appointment a few towns over from us so we packed up after school and headed that direction. Afterwards we had lunch at a local farm and took a wagon ride out to the orchards to pick some apples fresh off the trees. Charlie slept through most of it only waking long enough to drink two bottles during the trip. Nonetheless, it was great to get out and about today and healthy for the big boys to see that life will return to normal.

get-attachment

Now, if I could just make progress on the mess that is my house these days or on some of the million thank you notes that need to go out - that would real progress!

Monday, September 16, 2013

First Cardiology Appointment

Charlie's cardiology appointment was this afternoon. After his echo we met with Dr. Peterson to go over the results as well as discuss Charlie's progress in general.

His echo showed a few things of minor concern. First, the two valves between the atriums and his left ventricle are showing signs of leakage. This is most likely a result of the increased pressure in his atriums that the Norwood operation causes. However, we don't want his only functioning ventricle to be overwhelmed with too much blood flow.... (everything in cardiology seems to be a delicate balancing act) ...so we've started Charlie on a new medication that will help his heart beat stronger, but a little slower. Dr. Peterson is hopeful this will help resolve the issue.

Second, she noticed that Charlie's aorta shows some narrowing. This could be one of two things. Either the narrowing is just the difference from the portion of the aorta Dr. Huddleston enlarged and where the enlargement ended or Charlie's aorta is narrowing on it's own. Right now Dr. Peterson is leaning towards the first one and wants to keep a close eye on it over the next couple months. Charlie will have a cardiac cath around 4 months old so they can get a better, more detailed look at the area then. And if he shows any signs of distress or things look like they are getting worse - we'll simply schedule the cath sooner than later. They should be able to balloon open the aorta during the cath if needed.

On a brighter note, Charlie's blood pressure, heart rate and pulse ox looked great today. In fact, his pulse ox was 91 which is pretty much unheard of in Norwood babies... And because he's continuing to put on weight, we've been cleared to let him sleep longer during the night between feedings. So tonight we are not setting an alarm clock for every three hours! Plus, Dr. Peterson said if we had another week of weight gain that we could move to nursing at night and pumping/fortifying/bottle-feeding during the day! Praise God! That means mommy will be getting a lot more sleep at night!

So for now we've added a new medicine and we're continuing to spot check his oxygen levels. We go back to the pediatrician later this week and return to the cardiologist and the echo lab in three weeks. Please pray that this new medicine does the trick and that we don't find any additional narrowing of the aorta in our next echo. We're in no rush to head back into the world of anesthesia and heart procedures....

Saturday, September 14, 2013

Aortic Issues

Wrapping up our mini-series titled "Charlie's Screwed Up Heart"

There are three main defects I haven't addressed yet. All three of these deal with Charlie's aorta which is the artery responsible for carrying oxygenated blood out of the heart and distributing it to the entire body. Without this oxygen-rich blood circulating the body faces organ failure and oxygen deprivation in the brain.

Let's breakdown the last three:

AORTIC HYPOPLASIA - a fancy medical term for a small, underdeveloped aorta. Because Charlie's right ventricle isn't functioning and pushing blood out through the aorta - the aorta didn't grow to the proper size. At birth his aorta was about 1/4 the size that would be expected in a normal heart. Very small aorta = very limited blood flow to the body.

AORTIC STENOSIS - in a normal heart all the veins and arteries that lead in and out of the heart have a small valve controlling blood flow. Think of these valves like one-way doors that open and close as the different chambers pump to allow a designated amount of blood to pass through. With aortic stenosis, the valve that connects the heart to the aorta is too small or fails to open properly and doesn't allow enough blood to flow through to the body. Again - too little blood flow through the valve to the aorta = lack of aortic growth.

COARCTATION OF THE AORTA - a doctor's way of saying there is a kink or narrowing of the aorta. Since Charlie's aorta is already ridiculously small any narrowing of the aorta can cause serious issues. It causes his heart to have to pump even harder to pass blood through the narrowed section.

So there you have it....Charlie's heart explained in three short days! Tomorrow we'll be back to our regularly scheduled programming complete with some medical updates and maybe even a picture...

Friday, September 13, 2013

Transposition Explained

Round 2 of explaining Charlie's Cherished Heart

Today I'm only going to tackle one of Charlie's defects:
TRANSPOSITION OF THE GREAT ARTERIES (TGA)

TGA occurs when the two main arteries going out of the heart—the pulmonary artery and the aorta—are switched in position, or “transposed”.

Normally, blood returning to the heart from the body is pumped out of the heart to the lungs. There, it receives oxygen and returns to the heart where it is pumped back out to the body. In other words, blood in a normal heart follows this patterned route repeatedly: heart, body, heart, lungs, heart, body, heart, lungs....

In TGA, blood returning from the body is pumped back out to the body and blood returning from the lungs is pumped back to the lungs. This occurs because the main connections are reversed. Basically, the heart has two closed loops of blood flow. The result of transposition of these two vessels is that too little oxygen is in the blood that is pumped from the heart to the rest of the body because that loop of blood never goes to the lungs to pick up oxygen.

This means that TGA is a cyanotic (lacking oxygen) heart defect that leads to a bluish-purple coloring of the skin and shortness of breath. How bad the symptoms are depends on whether there is a way for the two separate blood circuits to mix, allowing some oxygen-rich blood to get out to the body. This mixing can occur through other defects, such as a hole between the bottom chambers of the heart (VSD), or through a shunt (ductus arteriosus) that normally is present at birth. Luckily (?), Charlie had both of these which is why he was remarkably pink at birth!

Also, because Charlie has a Double Inlet Left Ventricle all the blood coming back to Charlie's heart (oxygen-rich blood and oxygen-poor blood) is pumping into one ventricle and mixing together creating "partially oxygenated" blood. Then his left ventricle is pumping blood back to the lungs. Charlie's right ventricle is severely underdeveloped (HRHS) causing it to malfunction. Thus, the chamber that should be pumping oxygen rich blood to the body isn't doing it's job and Charlie has poor oxygen saturations compared with the general public.

After Charlie's birth, we relied on that ductus arteriosus mentioned above to keep some oxygenated blood circulating through his little body. This required him to be on special medications to keep that passageway open (it normally seals itself off shortly after delivery).

TGA may be the most confusing part of this whole diagnosis - if you managed to follow this post....tomorrow will be a breeze!

Thursday, September 12, 2013

Charlie’s Diagnosis

OK - so you've had a few days to digest the normal heart structure. Now let's talk about Charlie's heart.

First - the actual diagnosis
Double Inlet Left Ventricle
Ventricular Septal Defect
Hypoplastic Right Heart Syndrome
Transposition of the Great Arteries
Aortic Hypoplasia
Aortic Stenosis
Coarctation of the Aorta

Charlie - Birth heart

Trust me when I say - that's a lot to take in....so let's take it a little at a time for the next few days

DOUBLE INLET LEFT VENTRICLE (DILV) - both atriums dump blood into the left ventricle. In a normal heart the atriums dump blood into separate chambers keeping oxygenated blood from the lungs separate from de-oxygenated blood coming back from the body. In Charlie's heart the blood that is coming back to the heart from the lungs and body are mixing together in the left ventricle creating "partially oxygenated" blood that is circulating back out to his body.

VENTRICULAR SEPTAL DEFECT (VSD) - there is a hole between the left and right ventricle that is allowing blood to flow in both directions between the two. In a normal heart the two ventricles have a complete septal wall between them keeping the oxygenated blood from the lungs and the de-oxygenated blood from the body separate.
HYPOPLASTIC RIGHT HEART SYNDROME (HRHS) - this is simply the medical way of saying that the right side of Charlie's heart is underdeveloped. In utero the four chambers of the heart grow as blood flows through them. The DILV creates a situation where there is little blood flow through Charlie's right ventricle (only what is sneaking through the VSD). Therefore the right ventricle never grew to it's proper size.

OK - That's probably more than one can take in via a post. We'll tackle more tomorrow!

Monday, September 9, 2013

Normal Heart

This is a "normal" heart.

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Suffice it to say - Charlie's birth heart looked NOTHING like this. His arteries and ventricles were switched, one chamber of his heart was practically non-existent, he had a kink in his underdeveloped aorta and a valve that didn't open properly (to name a few of his issues). Several followers have asked for details regarding his diagnosis, long term plan, life expectancy, etc.

Over the next few days I'm going to attempt to put some of this in perspective for those of you who are following Charlie's story. I'll try to explain the differences in Charlie's heart and the impact they have one him now and in the long run. Some issues will be remedied along the way, others will remain unfixed, more will be manipulated to a 'working' yet abnormal state.

I'm far from a medical guru - but I've come a long way in heart anatomy since April when we received Charlie's diagnosis. Hopefully, together we can map some of this out!

In the meantime - study this normal heart.....you'll need to understand it before you'll be able to understand the mess that is Charlie's heart.

Friday, September 6, 2013

A Pediatrician

It is hard to believe that Charlie has been home for a week!

Today, he met his pediatrician for the first time. Not a neonatologist, not a surgeon, not a cardiologist, not an anesthesiologist - a pediatrician. You know, the doctor that 'normal' babies go see...

After a long and detailed recap of Charlie's first three weeks, Dr. Herman gave Charlie a once over. Turns out that our little man is still thriving despite all his early setbacks. He was in the 85% for height and 60% for weight (which is particularly impressive when you consider her didn't eat for the first 12 days of life). We are going to continue doing some weight checks along the way to monitor his growth. Because of the anatomy of his heart, Charlie burns more calories than the average baby so his caloric intake is vital.

Dr. Herman is submitting the paperwork for Charlie to get the RSV shots. The shots are monthly and cost $1200 per dose. Insurance companies notoriously don't like paying for the shots so say some prayers that our insurance will cover the shots for Charlie. He really cannot afford to get RSV with his oxygen saturations only being in the lower 80's on a regular basis.

Charlie's only bump in the road today was being diagnosed with thrush. He started medication today to clear it up. I've been on an anti fungal since Tuesday so with both of us being treated we are hoping to get past this quickly.

On the other hand, this mama is a little worse for the wear... After waking up from an afternoon nap with the chills and 102* fever, I've been diagnosed with mastitis. So now I'm on an antibiotic to clear up that infection. The plan is to sleep as much as possible, pump as much as possible and take my medicine so that I can get back to taking care of my baby....

Thursday, September 5, 2013

Surgical Follow Up

We were back at Cardinal Glennon today for Charlie's cardio-thoracic surgical follow-up. Walking in the front door of the hospital felt almost surreal. It was the first time I carried Charlie through the doors of the hospital. It was the first time I checked in at the front desk for an appointment as opposed to flashing my "we're here every day indefinitely" ID badge that I had for the last few weeks. It was the first time Charlie was seen in the Dallas Heart Center.

Dr. Huddleston was very happy with Charlie's progress since he's been home. Charlie has gained some weight and showed off his stellar bottle drinking skills. His chest X-ray looked good from all angles and his blood pressure was spot on. His oxygen saturation and pulse looked as good as can be expected with the current anatomical set up of Charlie's heart. Dr. Huddleston even decided to discontinue Charlie's diuretic. The remainder of Charlie's meds will most likely be long term/lifetime meds.

We wrestled with the pulse oximeter as a group in an attempt to come up with a battle plan that doesn't make us want to throw it out the window. Ultimately we (myself, Dr. H, and the CTS nurse) decided it was best if we switched to spot checks for his pulse/ox readings as opposed to continuous monitoring. At night we'll do a spot check before bed and one first thing in the morning...then we'll only use continuous monitoring at night if Charlie is sick or we have other concerns. Praise God!

Dr. H's only concern was the scar tissue building up at the surgical site. But after close examination it was determined that it is just that...scar tissue. So we'll watch it and hope it doesn't build up too much as it will make the subsequent surgeries a little harder to access and the new sites won heal as nicely. A small price to pay for keeping our little man's ticker ticking!

Our path over the next few months will be dictated by Charlie. We are basically waiting for his oxygen saturation levels to start declining. His cardiologist, Dr. Peterson, will be responsible for monitoring this and will help determine when to schedule Charlie for surgery #2, the Glenn. He'll have a cath somewhere around 4 months old if not before to prep for the Glenn.

Our new goal is to keep Charlie as germ free and healthy as possible as we navigate cold and flu season....

A positive appointment overall! Thank you for the continue prayers...

Wednesday, September 4, 2013

I Loathe Pulse Oximeters

We continue to wrestle with the pulse ox machine. We've tried multiple different locations for the sensors, different types of tape, extra tape, etc. we called the medical supply company that provided the equipment only to be told...the sensors are temperamental. We may end up buying some other type of sensor to see if that makes any difference. *sigh*

Charlie is really settling into a routine he...re at home. Granted, that routine consists of eating, sleeping and pooping, but he's adjusting to life outside the hospital walls well. He's even starting to sleep through some of the 800 kisses his brothers lay on him.

Because Charlie is gaining weight they've cleared him to nurse 1 or 2 times a day. He's been doing pretty well although we've found that he gets hungry about 30 minutes earlier than normal after nursing. It's probably a sign that he burns more calories nursing than using a bottle, he doesn't get quite as much volume, and he's not getting those extra 48 calories he gets when we fortify the milk in the bottle. Still - progress is progress...

We've learned lots of little things along the way with Charlie. For instance, we had to register our home medical equipment with the power company. This makes us a priority for restoring power in an outage since no power means no functioning equipment. Also, we've provided the local EMTs and 911dispatch with details on Charlie's medical status. That way in the event of an emergency they'll be better prepared by the time they arrive at our house. Small things that can make big differences with medically fragile kiddos!

Monday, September 2, 2013

Our Little Warrior

Ironically, we may be getting less sleep now than when Charlie was in the hospital. At the hospital only one of us was up with him at night and if he monitors decided to be finicky a nurse would deal with it. Now both of us are up (Matt feeds Charlie while I pump) and we both wrangle the pulse oximeter at different points in the night. But we're trading mornings of sleeping in and trying to get naps in during the day.

Charlie's feeding went better yesterday evening and last night! He's back up to his 80-90 mL goal thankfully.

Unfortunately his somewhat awkwardly timed 'suck, swallow, breathe' results in lots of hiccups. As you can probably imagine, hiccups are an unpleasant experience for someone who has their breastbone wired shut recently. So lots of writhing and crying come with what is a normal baby thing...

His scars are airing out this morning before we doctor them up with betadine, neosporin, gauze and band aids. So here's a look at our little warrior's battle wound... He doesn't seem bothered by it based on that goofy grin he's got going...

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Sunday, September 1, 2013

A New Normal?

Last night we managed to get the pulse oximeter set up so that it only alarmed twice and both showed saturations in the upper 60'a (not uncommon for Charlie when he sleeps). This resulted in mommy getting *a little* more sleep than the night before.

Today however Charlie is letting us know that he was just taking it easy on us yesterday because it was his first day home. His feed volume is way down today and he's been far more irritable. Maybe cause he's not eating as much? (You just can't reason with kids these days!)

We did manage to get all his medications in him this morning and get his chest wounds cleaned and re-bandaged. But that was much like wrestling a screaming, crying octopus. But all in all - his incision site looks good. What little redness there was when we left the hospital seems to be fading.

Most of this morning was spent trying to put the house back together after dropping everything in piles when we came home from the hospital. We now have places for most of Charlie's equipment and cleared space in a cabinet for bottles/feeding supplies. We've washed loads of dishes, wiped down counters, and sorted laundry. There is still lots to-do but we are slowly catching up.

We're trying to figure out how we'll get three boys out of the house on time for anything. And how we will be able to carry all of Charlie's equipment with us when we do leave... It's going to be an interesting first few trips out of the house...

Saturday, August 31, 2013

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....

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Friday, August 30, 2013

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!!!!

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See that world whizzing by, little man?

IT’S ALL YOURS!

What A Difference Two Weeks Makes!

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Thursday, August 29, 2013

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!

Wednesday, August 28, 2013

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.

Tuesday, August 27, 2013

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!

Monday, August 26, 2013

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.

Sunday, August 25, 2013

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.

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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?

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Saturday, August 24, 2013

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.

Friday, August 23, 2013

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.

Thursday, August 22, 2013

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!!!!

Saturday, August 17, 2013

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…

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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!

Friday, August 16, 2013

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.

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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!) 

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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.  

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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.

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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?

Wednesday, August 14, 2013

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….

Friday, August 9, 2013

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.

Tuesday, July 30, 2013

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.  Smile

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…

Sunday, July 28, 2013

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….

Wednesday, July 24, 2013

Nesting

It’s that time in pregnancy when I can see the end.  Which also means I feel as though there is a looming deadline for all the things I want to accomplish before Charlie arrives.  Why does the list always seem to be longer than the time left? 

We’ve got the basics finished.  The crib is set up, the dresser is in Charlie’s room, and I finally washed some baby clothes this past weekend.  There is more than enough food in this house to feed my family for a few days. 

If Charlie arrived this afternoon we could survive.  But there are still lots of things to accomplish.  Not the least of which is to pack a hospital bag.  (My OB told me to do this back at 32 weeks – I’m looking at it as if Charlie won’t arrive until I do it so there is no need to rush things along.) 

Other things include finishing laundry for Charlie, getting all those clothes into his dresser, and doing some general cleaning and organizing.  We’d also like to finish up some yard work, wash the windows inside and out, and clean out a few closets.

So, who wants to come over and help us out?

Tuesday, July 23, 2013

What John Knows

*While mom and dad are at the hospital it’s going to get dark.  He and Nathan will have to stay the night at Grandma and Grandpa’s.

*Baby Charlie will have to be in the hospital.

*Charlie has a hole in his heart.  The doctors will fix it.

*Charlie might have to be fed in his tummy (g-tube) like Baby Jax (a friend).

*Charlie will be born in August.

*Babies eat baby food.

*Charlie like bottles and milk (and watermelon – but he can’t eat that).

*Charlie is in mommy’s tummy and sometimes he kicks mom.

*Charlie will be born in the middle of the night.

*Charlie likes going inside restaurants.

…and that’s it!

Monday, July 22, 2013

I Don't Know How You Do It

Over the past few months as we've shared Charlie's story with friends, family and acquaintances - we have encountered any number of comments.  Some are as simple as, "We'll pray for you,"  or "I'm so sorry."  Many relay stories of friends/family who have "been there and done that" and assure us everything will "work itself out."

One of my favorites is, "Let me know how we can help."  I normally joke back that they shouldn't make idle offers because we are making a list of people who volunteer services.  But honestly, I'm not really joking....we've got your name and number if you've said that to Matt or me in the past 4 months.

The comment that boggles me the most is when people say, "I don't know how you do it."  Really?!?!?  What choice do we have?  We have two other boys at home and one on the way that is going to need lots of extra attention.  It's not exactly fruitful for anyone involved for Matt or I to curl up in the fetal position and give up.  Matt has to continue working to earn money for our family and maintain our health insurance.  Last time I checked my 3 and 4 year old are not self-sufficient and can't adequately cook, clean, and transport themselves around town.  So we go on...

(For the record - I think all these comments are well-intentioned)

Some days are better than others.  Yesterday, I was in a funk.  Emotionally charged.  Drained from having 'kept going' for too long without a break.  (Matt was out of town for nearly two weeks straight).  So I cried.  I said out loud that I was scared.  I'm overwhelmed at the idea of balancing two toddlers in preschool and gymnastics while tending to an extremely fragile baby in the hospital.  More so, I'm trying to figure out what we'll do with this fragile baby when we come home - and no longer have some of the highest paid babysitters (doctors and surgeons) checking on him all day.

But the point is - We're Doing It.  All of it.  The good, the bad, the muddled mess in between.  We're blessed that we have a great support system.  We have friends who are willing to babysit.  Family who has trekked along to doctor appointments to serve as extra sets of ears.  Office mates who have sent special onesies that will accommodate all the cords, wires and pumps that will be hooked to Charlie in his early months.  Those friends and family are doing it.  This is going to be the epitome of 'It Takes A Village.'  We're learning to embrace that!

I Don't Know How You Do It  - If we don't, where would that leave our children, our family, our marriage?