Huck’s Heart | The Grand Explanation 

I know I’ve been promising a video, but that has actually proven to be a little more complicated than I think I can take on right now, so I’m hoping this will help explain his anatomy and surgeries just as well. Also, disclaimer – I’m clearly not a doctor or a nurse, we’ve just learned as much as we can about Huck’s diagnosis and surgeries. If you are a doctor or a nurse and notice that I don’t have something quite right or maybe worded improperly, I apologize in advance! 🙂 The term “hypoplastic” will be used quite a bit. This just means “underdevelopment or incomplete development”. Okay, I’m done with the disclaimers. 

Huck was originally diagnosed with hypoplastic left heart syndrome (HLHS) when I was 22 weeks pregnant. This was diagnosed at UTMB. When we transferred care to Texas Children’s at around 33 weeks, it was later found that he actually didn’t have HLHS, but something similar. There’s a whole category of heart kids that are “single ventricle”, which includes hypoplastic left heart syndrome, hypoplastic right heart syndrome, and quite a few others. The common denominator is that all of these kids only have a single ventricle, and that most will require the same palliative three stage surgery series, but Huck’s heart is different in its own way; a rare combination of several different defects. For simplicity’s sake, you could say that his heart is fairly similar to hypoplastic left heart syndrome, but he has some other characteristics that make it different. 

So, I’ll take you back to anatomy class for starters. (Wishing I’d paid a lot more attention in college A&P these days!) A normal heart has two sides – a left side and a right side, made up of four chambers. The right side recieves deoxygenated blood “blue blood” from the body through two veins called the Inferior Vena Cava and the Superior Vena Cava. (Keep these two guys in mind for later.) The blue blood travels into the right atrium, down to the right ventricle through the tricuspid valve, and then is pumped into the lungs through the pulmonary artery. The blood is then oxygenated in the lungs to become red blood, and is pumped from the lungs into the left atrium, down to the left ventricle through the mitral valve, and then back out to body through the aorta and the aortic arch. 


First thing to address is that Huck only has a single ventricle, which means where a normal person has two lower chambers, he only has one, which is why, along with HLHS and HRHS kids, he essentially only has “half a heart”. He also has ventricular inversion, meaning his ventricles are swapped. His left ventricle is on the right and his right ventricle is on the left. But also, and this is where it gets a little complicated, add in that his “left sided” ventricle (which is actually his right ventricle) is hypoplastic. So he has what they call a “hypoplastic left-sided right ventricle”. 

He also has tricuspid atresia, which means his tricuspid valve never developed. (A little backstory – his tricuspid valve would have originally been on the right side of the heart, but with the ventricular inversion it ended up on left side with the “left-sided right ventricle”. The valves were actually what caught our fetal cardiologist’s attention, because she noticed that the mitral valve was on the wrong side of the heart, and then she realized that the characteristics of his single ventricle were more on par with a left ventricle but was on the right side. This led her down the line, hammering out each detail, until she pretty much diagnosed him prenatally spot on with what they determined after he was born. She’s a rockstar!)

So continuing on, he also has a hypoplastic aortic arch, also known as coarctation of the aorta, which means his aortic arch was severely underdeveloped. 

Then he has something called “congenitally corrected transposition of the great arteries”, or CCTGA, which means his two main arteries are actually backwards and would normally be considered a defect in itself called transposition of the great arteries (TGA) but because of his ventricular inversion, his arteries are connected to the correct ventricles, making it “congenitally corrected”. 

He also had a very large Patent Ductus Arteriosus, or PDA. A ductus arteriosus is a blood vessel that, before birth, exists in the aortic arch that connects the aorta and the pulmonary artery. This is how a baby like Huck can survive in the womb. It provides a route of blood flow that would have otherwise been restricted by his anatomy. Within minutes or up to a few days after birth, the ductus arteriosis is supposed to close as part of the normal changes occurring in the baby’s circulation, unless a baby is given prostaglandin to keep it open. In Huck’s case, his was very large and would have most likely remained open (which is why it is referred to as a “patent” ductus arteriosis), but he was on prostaglandins just to be safe. His PDA was actually assisting his heart function by allowing systemic blood flow to the body, where as his hypoplastic arch would have restricted it. The PDA was removed during the arch reconstruction portion of his first surgery. 

And lastly, he had a moderately sized ventricular septal defect (VSD) and a small atrial septal defect (ASD). The two septal defects are something a lot of people have heard of, commonly referred to as a “hole in the heart”. This picture below is the closest I have found to Huck’s heart. It shows the ventricular inversion, the CCTGA, the hypoplastic left sided right ventricle, the tricuspid atresia, and both septal defects. It is only missing the hypoplastic arch, which is shown in the second picture.




So how does a heart with these defects survive?

In a normal heart, the basic path of blood is oygen poor (blue) blood flows into the heart from the body, out to the lungs, where it is oxygenated (red blood) and returned to the heart, and then sent back out to the body. Red blood and blue blood are kept seperate. Since Huck is missing some of the key components to make this work and some of his anatomy is swapped, his blood flow is different. You can follow this in the picture above – blue blood flows in from the body and into the right atrium, red blood comes in from the lungs and into the left atrium. At that point, because the left sided ventricle and tricuspid valve aren’t there to do their job, it forces the blood back over to the right side of the heart, and all of the blood goes into the same area and mixes to become “purple blood”. Then the mixed blood is pumped both out to the body and out to the lungs. Purple blood is okay but not ideal long term. 

So for Huck’s first surgery, which was a modified Norwood, they had to make a few changes to Huck’s heart so that his blood flow to and from the lungs was adequate, and the blood flow to and from his body was adequate. The Norwood is usually done as a bridge to get a baby big enough and stable enough to support the circulation of a Glenn (second stage). The main issue for Huck was that because he doesn’t have a working valve on the left side of his heart, the blood doesn’t have a way into the left sided ventricle, and therefore it doesn’t have a way into the aorta and back out to the body. His VSD could have been used to their advantage because it allowed blood flow into the very small left sided ventricle from the back side, and would have allowed blood a way into the aorta, but his VSD was considered to be moderate and they didn’t trust it to remain open and a proper source of blood flow. To alleviate this issue, they connected his two main arteries (using a “double barrel” DKS procedure) and added what’s called a “BT shunt” to help control the blood flow to the lungs. They also removed the PDA and reconstructed his aortic arch (previously hypoplastic) so that blood flow from the heart out to the body was not restricted anymore and didn’t require prostaglandins long term. And they cut a little more out of his atrial septal defect to allow blood to flow more freely from the left atrium to the right, giving him more of a “common atrium”. This picture shows hypoplastic left heart syndrome and a homograft patch instead of a DKS, but it’ll give you an idea of how they join the two arteries into one big artery and where they place the BT shunt. 

The end goal for a single ventricle (a completed Fontan circulation) is to eventually bypass the heart completely for oxygen poor blood from the body, which will then go straight to the lungs. Then the heart’s only responsibility will be to receive oxygen rich blood from the lungs and send it back out to the body. 

For the next step in the palliation series, Huck just had his second surgery at 3 months 25 days. This surgery was a bidirectional Glenn, and they basically removed the BT shunt and connected his Superior Vena Cava (SVC) straight to the pulmonary artery. This is the first step in bypassing the heart for oxygen poor blood to the lungs. So, in a normal heart, oxygen poor blood from both the upper and lower body would normally go into the right side of the heart, and out to the lungs to be oxygenated, pretty simple. But in a Glenn, which addresses the upper body’s blood flow, the oxygen poor blood from the upper body goes into the SVC like it should, but the SVC is now connected straight to the pulmonary artery, which bypasses the heart and goes straight to the lungs. From there it will receive oxygen from the lungs, and go from the lungs into the left atrium, over into the right atrium where it will meet with the oxygen poor blood still coming from the lower body, down to his right sided left ventricle and then back out to the body. So essentially, he’ll have less “purple” blood (red and blue blood mixing). Also, not a standard part of a Glenn, but his surgeon performed a “right pulmonary arterioplasty”, which placed a patch on his right pulmonary artery because it was mildly narrowed in one spot.

During the third surgery, the Fontan, which will happen at about 4 years old, they will go back in and do something similar to the Glenn, but at that time, they will connect the Inferior Vena Cava (IVC) straight to the pulmonary artery like they did with the SVC. This will complete the Fontan Circulation and bypass the heart for all oxygen poor blood from the body to go straight to the lungs. At that point, Huck will have the closest thing to “normal” blood flow (blue blood from the body to the lungs, red blood from the lungs to the heart and back out to the body) that his body can have with a single ventricle.

Will he ever be “cured”? 

The thing to remember with all of this is that for a single ventricle baby, there is not a “cure”. They call this a palliative fix. Palliative generally means “providing relief from the symptoms and stress of a serious illness with the goal being to improve quality of life for both the patient and the family.” While they can’t reconstruct his entire heart or ever give him two ventricles, they can alleviate the problems associated with only having one ventricle and hopefully give him a long and happy life.

How long will he live?

Currently there are only people in their 30’s that have had this surgery series so there is really only data to that age, but our hope is that by the time Huck is in his 30’s, those people will be living well into their 60’s. In some cases, single ventricle babies end up needing a heart transplant and it’s even possible that some kids that have the whole 3 stage series still end up needing a transplant. That is something that will always be in the back of our minds. Huck’s single ventricle is doing all of the work, so there’s always a chance it could lose function and he could end up in heart failure. Huck does have a small advantage in that his single ventricle is a left, which is considered to be the “workhorse” of the two. He also has a small disadvantage in that his single ventricle has an area of “mildly depressed function”. We have been told it is very possibly for him to regain full function in his ventricle at some point post Glenn, just due the overall workload being reduced on the heart in comparison to a BT shunt circulation. But for factual sake and the statistical side of things, studies show that survival after the bidirectional Glenn and Fontan operations is nearly 90-95%. The mortality rate for single ventricles is usually highest between the Norwood and Glenn, what they call “interstage”. So when a baby makes it to their Glenn, it’s a big deal. Usually a pretty celebratory day around the CVICU! 

Will he have a normal life?

From our perspective, yes, we absolutely hope so. With that being said, living any part of your life in a hospital is not normal. Having 3+ open heart surgeries is not normal. Taking medication for the rest of your life is not normal. BUT we hope that Huck will be able to do anything he wants to do. Ability is individualized. It’s very possible that he will get out of breath a little easier, and pretty unlikely to participate in heavy contact sports (in protection of his sternum), but I have heard of many kids that play sports and have exceeded expectations. I posted a while back of a girl named Meghan Roswick, who is a 25 year old Fontan with HLHS that competed in gymnastics as a child and is a competitive skier now. It will all depend on him and how well his heart holds up. We plan to do all the normal things we would have done anyway – trips to the lake, playing chase around the house, family vacations, swimming lessons, preschool, normal school, just “life”.

It’s truly amazing what modern medicine can do now and we pray that it continues to progress. Texas Children’s has recently been ranked as #1 in the country for pediatric cardiology and heart surgery, so we feel confident that throughout Huck’s life, he’s in the best hands possible (we literally trust our surgeon with his life!) and they will do everything they can for our little boy. He is currently doing very well with his Glenn recovery but we are still working on crossing some things off the list before the “h word” is discussed. 

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Huck Inlow | 3 Months


Stats: 

  • Birth – 3035 grams | 6 lbs 11 oz
  • 1 Month – 3950 grams | 8 lbs 11 oz
  • 2 Months – 4420 grams | 9 lbs 11 oz
  • 3 Months – 5620 grams | 12 lbs 6 oz | 62 cm

He is wearing size 2 diapers and mostly 3 month clothes, but a few of those are starting to get snug length wise. He basically just blew right through that size. 

Eating: Huck is currently eating 85-100 mls of breastmilk (roughly about 3 ounces, give or take a few mls) about every 3-4 hours. He was made NPO (nothing by mouth) for a week due to a bloody poopy diaper and that hindered his volume capacity a little but he’s finally doing a lot better.

Sleep: His daytime sleep is still fairly consistent. He’s normally sleeps until about 8 AM, gets a bottle, then meds, and lovenox about 9 AM, takes a shortish nap, gets his weight done, a bath, and lead sticker change, followed by another bottle and meds, then a really long nap from about 12-2/3. He’s usually awake and happy around 3 PM where he will eat/play/cat nap until around 5:30. He’s been eating less and sleeping more at night which the doctors and I are both good with. He’ll normally eat again about 9 PM, sleep a good stretch, eat again around 2-3 AM and sleep another good stretch. 

He still sleeps a lot in the mamaroo which helps his reflux a lot, but will also sleep pretty decent in his bed, in his “nest” that they make for him. 

Milestones:
He rolled belly to back for the first time and has had a few little laughs! He also sits up assisted and can control his head and body really well. 

Medical Milestones: Thankfully, nothing has changed majorly since 2 months. Currently still inpatient on the CVICU heart failure unit while we wait on our Glenn surgery. We will be here until then. He is on milrinone and clonidine + reflux medications + a twice daily diuretic. He is not on any respiratory support at the moment and taking all feeds by mouth. He is finally off tpn and lipids, but still getting therapeutic doses of lovenox for a blood clot in his picc line. The Glenn should be happening in the next few weeks! 

Likes:

  • Being held / rocked
  • The mamaroo
  • His playmat 
  • Anything with lights and sound
  • The bumbo chair 
  • Warm milk
  • Listening to Elvis (it seriously calms him down immediately)

Dislikes:

  • Diaper changes
  • Picc line dressing changes
  • Baths
  • Lovenox shots 
  • People messing with his feet

I can’t believe this little guy is already a quarter of a year old. It seems like it’s both flown by and crawled by. I love getting to know him and spending time with him and seeing him with his daddy and his sister. His next surgery should be very soon and if everything goes as planned, we should be home not too long after that. For the first time, all four of us will be together under one roof. I can’t hardly wait! ❤️



Huck Inlow | One Month

Our sweet little Huck was one month old on June 13 but as usual I’m a bit behind. When comparing to Whitlee’s one month update, this one will be a little different since he’s in the hospital still but I want to document his milestones, nonetheless. 

Stats: Hospitals go by grams, but I’ll translate. Huck was born at 3035 grams which converts to 6 lbs 11 oz and is now up to 3950 grams which converts to 8 lbs 11 oz. So he’s up two whole pounds! This is amazing for a heart baby and the fact that he didn’t get to eat anything until he was several days old, and has been intubated twice more inside his first month and was held on feeds during those times. (Has technically been intubated 4 times now – once for surgery, twice afterwards, one more inside the second month.)

Eating: Huck is currently eating 80 to 100 ml (2.7 to 3.3 oz) of regular breastmilk at each feed, typically about every 3 hours. Sometimes a little sooner, sometimes a little later. His doctors have him listed as “ad lib” which means he can eat whenever he is hungry as opposed to scheduled feeds. 

[Side Note – I don’t think I’ve mentioned this before, but Huck actually participated in a research study when they first started feeding him. I’ll try to sum it up quickly but basically a company called Prolacta created a human milk based fortifier from pasteurized donor milk and by using that fortifier instead of a milk based or amino acid based formula fortifier, they have been able to reduce the percentage of NEC (necrotizing enterocolitis) in NICUs around the country from 10-12% down to 2%. Fortifiers are used in babies that have low birth weight or have had delayed feeds for some reason, so someone had the idea of using the same fortifier in heart babies as well, since they have delayed feeds or decreased volume due to surgery and/or the overload on their hearts. They’re currently in the study phase of that idea, comparing babies that have the human milk fortifier vs a formula fortifier to see if they tolerate feeds better, have reduced NEC, and have improved growth or development. Here’s a link if you’re interested in reading more.]

Anyway, so how this worked for us is that when they started feeds, we knew Huck would get a fortified version of my breastmilk. By participating in the study, we did not know if he would get the human milk fortifier or the amino acid based formula fortifier that TCH uses as their standard care, it’s all a secret to protect the integrity of the study. We will eventually know which arm of the study he was on when the study concludes in 18 months. When we were supposed to go home, they had to transition him off of whichever secret “study milk” he was on, to be solely on my breastmilk with a known amino acid based formula fortifier. Well he rejected every single bottle that was not labeled “study milk”. I have no proof, but you can probably guess where I’m going with this. So we tried a different amino acid based fortifier and he did a tiny bit better, but it was still a struggle. Then he coded, was intubated again, and when he was extubated, he would barely eat at all. Like we fought to get him to take 20-25 mls. There was talk of putting an ng tube back in, there was suspicion that he was having major reflux issues, maybe tube irritation from intubation, we just weren’t sure. All we knew was he wouldn’t eat and it was so important for him to eat and gain weight. One day, while I was pumping, his intensivist and a cardiology fellow were in the room and we were discussing the feeding issue and they suggested that whatever I just pumped, let’s give him that and see what happens, so just straight breastmilk. We started slow with half a bottle but he downed 30 mls in about 5 minutes, then took another 30 without batting an eye. The next feed, he took about 70. And the next, I think was 77. And he’s ate wonderfully ever since then. They decided as long as he gained weight, he didn’t need the fortifier. So far, so good! 

I’m exclusively pumping for him like I did for Whitlee, but with Whitlee I had an oversupply which led to 3 rounds of mastitis. I purposely decreased my supply this time to hopefully match more of what he would eat at his max point. I loathe pumping but since he apparently wont eat anything else, I have to stick it out. 

Sleep: He sleeps pretty well for the most part. When we were on the inpatient cardiac floor, I could stay every night with him and he would eat and usually go right back to sleep. He normally has one or two periods where he’s awake for about an hour and looks around a lot but he still snoozes quite a bit. 

Milestones: Because of his surgery, tummy time is delayed until 6 weeks but when he lays on my chest, he picks his head up and looks around. 

He loves to look at faces. He has an intense stare and can track really well with his eyes. He’s been tracking since just a few days old. 

He also furrows his eyebrows a lot and is very strong. A lot of his nurses call him “the hulk” instead of Huck. 

We’ve gotten lots of smiles. Still questionable if they’re real smiles or not, but they’re appropriate for when he seems happy, so I’ll take it. 

Medical Milestones: He had his first open heart surgery on May 16 at 3 days old, a double barrel DKS Norwood with BT shunt. Also taking full feeds by mouth and normally isn’t on any respiratory support. (He’s currently intubated while I’m typing this post.)

Likes:

  • Being held
  • Rocking and bouncing
  • Watching the mobile
  • When we talk to him 
  • His pacifier 
  • Holding hands with his nurses when they do his EKG’s
  • Having one arm next to his face
  • Oral care

Dislikes:

  • Diaper changes
  • Waiting on a bottle
  • Getting an echo done
  • When they hold his arm still during blood draws. He doesn’t cry when they stick him, only when they restrain his arm. 
  • Being swaddled with both arms in

I posted his one month picture on my instagram and the Huck’s Heart Facebook and said that I never expected when we decided to have a second baby that this is what our life would look like, that I’d be taking his monthly pictures in a hospital room but here we are. I’ve been asked quite a few times how I’m holding it together and if I’m being honest, everyone sees the public version of me. I’m not perfect and I have fallen apart a few times in private, but then I’m reminded that our baby boy is alive. No matter how scary it gets, or how hard this is, or what curveball we get thrown each day, he’s alive. And we will continue to fight right alongside our little guy for every day that he continues to fight too. ❤️ 

Huck’s Heart | Counting Chickens 


What you don’t see in these pictures – Huck basically hugging my hand with both of his hands, this momma losing her mind, sobbing uncontrollably over what might be happening, and the team of doctors flying around us setting up machines, placing lines, and making a lot of very fast paced decisions. 

Earlier this week, we started the discharge process with plans of getting to go home today (Wednesday). It’s basically the same situation with switching from CVICU to step down unit; they have a single ventricle checklist to make sure he’s ready to go which is really just a lot of testing, blood work, and regular baby milestones. When we left CVICU the first time, a week ago, one of the checklist items was an echo (an ultrasound of his heart if you’re new around here), which looked great, so off we went to our new digs. To get discharged, it’s a similar process – he had to gain weight appropriately, eat a certain percentage of his bottles, get an echo, get a brain MRI, get a chest X-ray, we had to get various education sessions, pass a car seat test, I mean really the list keeps going. But these items are in place for a reason and thankfully, Huck had his “go home” echo yesterday afternoon, just to make sure his heart was functioning okay. 

While we waited on the echo to be read, we proceeded with the next item on the list, his car seat test, which he passed! This is just a test where they make him sit in his car seat for two hours and make sure he won’t lose oxygen or stop breathing or anything strange. 

While he was getting car seat tested, Nolan went to get us some dinner from Cliff’s Grill. (Which I highly recommend if you’re in the Medical Center area. Their southwest burger is amazing!) We hadn’t even taken the first bite of food when suddenly, half of his single ventricle team came walking in the room. 

They explained somewhat quickly that between the last echo a week ago and the new echo, they noticed part of his single ventricle was not squeezing the way it should. They called it “mild to moderate”, with “severe” basically being heart failure. Thankfully it was noticed before the point of heart failure, and additionally all of his stats and monitoring were considered perfect and he acted completely normal and calm, which they said was all very confusing to them. They wanted to do a CT scan to figure out exactly what was going on. They thought there might be an issue with one of his coronary arteries which would have been indicated by the ventricle not squeezing properly. They explained that for the CT scan, they had to do a breath hold to get the perfect picture, which means he had to be reintubated so that they could manually make him hold his breath. To do all of that, he would also need to be sedated, so via standard protocol, they called in the rapid response team to transport him back to the CVICU. 

At that point, we were told a broad spectrum of what to expect – this could end up being nothing, if there was something wrong with the artery, they could possibly do a catheter procedure to fix it, if there is a major problem (which they did say was unlikely based on his appearance, stats and behavior), they’ll have to take him back into surgery, open him up and fix it. We knew in the back of our minds that he could also crash at any time during this process if there was truly something wrong. So I stayed with him the whole time – while they transported him, sedated him, intubated him and took him for his CT scan. I will truly know this kiddo inside and out before he’s even a month old. 

The CT scan was very quick. Apparently TCH has a top of the line CT machine and people come from all over the world to use it because it captures things in mere seconds. Huck’s entire heart function was captured in less than 5 seconds. They told me in the CT room that the radiologist was at home but waiting on our scans to come through and would read them asap and get back to us within an hour or so. 

About 15 minutes after we got back in the radiologist called and said his CT was perfect! Our baby boy has pulled out the stops once again! I cried for the hundredth time that evening, so thankful that he was okay. They extubated him late last night when the sedation started to wear off and he was put back on an oxygen cannula for the time being. He is doing well right now, a little grumpy and uncomfortable but I’m hoping he’s back to his normal sweet self very soon. 

We are incredibly thankful for the team of people at TCH that double check and triple check before sending you on your way and for our surgeon and his team who are absolute angels for saving our baby boy’s life. My sweet husband also deserves some recognition for being my rock through all of our tough times. He has taken on our wild Whitlee so that I can be with Huck right now and he’s managed to keep his sanity through all of it, while keeping me in the right mind set too. 


We’re currently waiting on the doctors to round so that we can find out exactly what they think they saw, why it’s okay now, and what the plan is going forward. This was a temporary setback in our journey home, but I can’t even tell you how relieved we are right now after a whirlwind emotional night. 

Huck’s Heart | Norwood Surgery

After we were able to get Huck here safe and sound and give his team of doctors time to come together on his condition, they were finally able to map out the anatomy of his heart well enough to make a plan. We originally thought he had hypoplastic left heart syndrome but after we transferred care to Texas Children’s they found it was not HLHS, but a rare combination of several different defects. He actually has coarctation of the aorta, l-looped ventricles, tricuspid artesia, congenitally corrected transposition of the great arteries, atrial septal defect, ventricular septal defect and a severely hypoplastic left sided right ventricle. For any normal person, these are all crazy to understand but heart parents/families will probably get some of them. But basically he is a single ventricle baby and his blood flow was restricted in a way similar to HLHS babies and requires the same series of surgeries – the Norwood, the Glenn, and the Fontan. They thought maaayybe if his VSD was large enough and his arch wasn’t a problem, then he might get to skip the first surgery and just do a Glenn and Fontan but both ended up being too small so he definitely needed surgery within a few days. 

Huck was scheduled for surgery Tuesday, May 16, 2017 at 7:15 AM at 3 days old. We got to the hospital early that morning and they let us both hold him a while before they came in and got started. He had a great, restful night the night before and slept the whole time we were holding him. 

They took him back about 7:30 and we waited in the CVICU waiting room. They came and gave us updates about every hour and a half and it was so comforting to see that door open and Kim (our point person for the day) smile and say, “Everything is going great.” The she would tell us where they were at in the surgery and how he was doing. 

About 4:00 PM they came back and said they were done with all of the repairs and he did great. They were about to start warming him back up and try to bring him off bypass. We knew there was a risk of him not coming off bypass immediately and going on ECMO (a longer term bypass machine) so we were anxious for that next update. Around 5:30, we got the update that he was off bypass, his newly repaired heart was beating on its own again, and they were about to close him up. Such great news! Then about 6:00 PM, we got the post op update from our amazing surgeon. He drew us a picture of what exactly they did, which was a Norwood with BT shunt and a arch repair with coarctectomy. He told us he did really well and there were no complications. 

We got to go see him about 7:30 and he actually looked good for what I was expecting. We’re so proud of our little guy and how well he did. 

Below this part are some pictures of him so if you’re unsure you want to see, I’d skip past this part. He is hooked up to a lot of machines and it looks a lot scarier than it is but a lot of is precautionary. He has multiple monitors, catheters, and iv lines and is on a ventilator but they’re already talking about taking him off the vent tomorrow. 


Recovery is going really well and they’re already turning down some of his meds to let him start waking up occasionally. I’m actually typing this less than 24 hours post surgery and he opened his eyes for the first time earlier this afternoon while we were there. He looked sleepy but I was so happy to see his little face awake again. 

Thank you again to everyone for their abundant prayers and thoughts. We feel so blessed to have such an army behind us praying for our baby boy! 

#hucksheart #heartofawarrior