Huck Inlow | 4 Months


Late posting, as usual! But in our defense, with Huck’s last surgery and recovery, things have been a little hectic! 

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
  • 4 Months – 5889 grams | 12 lbs 15 oz

He is wearing size 2 diapers and currently not wearing clothes since he just had his Glenn surgery. Was wearing 3-6 months right before though! He has almost completely outgrown 3 month onesies. 

Eating: Huck was eating anywhere from 120-150 mls per bottle, every 3-4 hours up until the point he went for pre Glenn cath lab at around 3 1/2 months. After that, he developed necrotizing entercolitis (NEC) and was put on bowel rest and antibiotics for 14 days. They ran IV nutrition during that time. He was released to restart feeds the Sunday after his Glenn and we started with 15 mls and are up to 30, but so far he is not tolerating his feeds very well. He has taken 7 bottles in the last 24 hours and puked up the entire volume of 3 of them. Eating is the main thing he has to figure out again post op in order to be able to go home. 

Sleep: Again, pre Glenn, he had a pretty decent routine, but it kind of all went out the window post op. He is starting to sleep more at night and nap less during the day, though. He still sleeps a lot in the mamaroo which helps his reflux, but will also sleep pretty decent in his bed at a pretty steep incline. I’m still brainstorming ideas for sleep when we go home.. pretty sure we will be getting a mamaroo, but trying to think of other options too. We had an arms reach co sleeper that I’m trying to figure out if there’s a safe way to elevate the head of it. If you have any ideas, let me know! He will be sleeping in our room for quite a while because I’ll be a nervous wreck for … oh, the next 18 years. 

Milestones: He rolled belly to back a few more times before he went back on chest precautions post op, and when he’s on his back, he rocks really hard to one side. Wants so badly to flip to his tummy! Has really great head control and can sit unassisted for up to 20-30 seconds!

He also went through his first hurricane. We are still in Houston, so we were here throughout Hurricane Harvey and it was pretty intense here for a little bit. 

Medical Milestones: He had his Glenn on September 7! This was his second open heart surgery. Post op recovery is going well! He was extubated the day after surgery and has been on room air since then. We have been working on getting back up to full feeds so that he can get off tpn and lipids and hopefully go home! His reflux is back with a vengeance so we’re trying to work around that. He is still on lovenox shots, clonidine, a diuretic, reflux meds, diazepam, and methadone for opiod withdrawals, but we are actively weaning methadone. They turned milrinone off a few days post op. So far, labs look good and indicate a successful Glenn! 

Currently satting in the high 70’s to mid 80’s, heartrate is 120-150, blood pressure is usually 90s/40s. 

Likes:

  • Being held / rocked / snuggled
  • Mamaroo
  • Watching videos of sister 
  • Watching movies, really likes Sing 
  • Being tickled
  • Listening to Elvis 
  • When you blow kisses at him
  • The lights that reflect off his monitors
  • Warm bottles
  • Chewing on toys
  • Field trips out of the hospital room

Dislikes:

  • Diaper changes
  • Picc line dressing changes
  • Baths
  • Lovenox shots
  • Getting his blood pressure taken
  • Getting his temperature taken
  • Being listened to with the stethoscope
  • Pretty much anything hospital related anymore, haha
  • Pacifier
  • Being restrained in any way

Whew, another month down. 123 days in the hospital and 128 days in Houston.. we are so ready to go home. We basically missed the whole summer being down here with Huck and we’re ready to get out of here, get back to the country, and enjoy the fall. Even though our stay has been long, I couldn’t imagine how things would be if we were anywhere else but TCH. We’ve now seen what happens with babies that start out where we were supposed to start out (that’s a story for another day), so that alone makes us thankful to be here, but we are also so thankful for how so many people have taken what seems to be a special interest in our boy and our whole family. I’ll actually miss a LOT of people when we finally go home! 

Huck Inlow, you are so loved! I hope one day I can explain to you how much not only your daddy, sister, and I love you, but how much our entire community and family and friends and nurses and doctors and PCA’s and therapists and complete strangers love you. You have so many people supporting you and we have been shown so much kindness from all of those people. I hope you always know that kindness. And I hope you know how many people have rooted for you, prayed for you, and fought for you. You have love from and support from all over! 

Happy 4 months baby boy! We can’t wait to show you the world! 


Advertisements

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. 

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 | Two Months


Stats: Well Huck was born at 3035 grams which converts to 6 lbs 11 oz and was 3950 grams at one month which converts to 8 lbs 11 oz and now we’re sitting at 4420 grams which converts to 9 lbs 11 oz. So he gained two pounds exactly in his first month and one pound exactly in his second month. This is great because he needs to be at least a certain weight before his next surgery. Hoping he gains at least a pound a month! (But since it has taken me a few days to post this, he’s already crossed over 10 lbs!)

He is wearing size 1 diapers and just outgrew the last of his newborn clothes. Which caught me a little off guard and I realized all of the clothes we brought with us are newborn! Had to go buy a few new outfits because they want him wearing clothes now. 

Eating: Huck is currently eating 50-60 ml of regular breastmilk at each feed, typically about every 3 hours. This amount is down a bit from 1 month due to some significant reflux issues. He’s slowly working his way back up though. In the past few days he has taken his old normal of 75-80 a couple of times. 

I’m still exclusively pumping for him, still hating it, still sticking it out. 10 months to go. 😝

Sleep: His daytime sleep has gotten pretty consistent. He’s normally awake for an hour and is happy and playing, then naps for two hours. We’re still working on a night time schedule but last night he was awake and upset on and off from pretty much 6 pm to 11 pm and then he slept from midnight to 4 am, ate a bottle and got a picc line dressing change, then slept again from about 5 to 9 before he was ready to eat again. He sleeps mostly in the mamaroo now which helps his reflux a lot. 

Milestones: We started tummy time! He got the all clear at 6 weeks post op and we started giving it a go. He doesn’t love it but he at least tolerates it for a short bit before he’s over it. He actually prefers to do it more on my chest than on the bed. 

We’ve gotten lots of real smiles! And he’s been cooing at me a lot lately. 



Medical Milestones: 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 couple of diuretics. He is not on any respiratory support at the moment and taking all feeds by mouth. He is still getting a little background nutrition help from tpn and lipids, and getting therapeutic doses of lovenox for a blood clot in his picc line. The Glenn is tentatively scheduled for 4 months old on September 13 but they will start discussing options at 3 months and 5kg weight. 

Likes:

  • Being held
  • Mamaroo
  • Laying on his back and looking around
  • Anything with lights and sound (I’ve been letting him watch newborn stimulation videos on YouTube and he loves it)
  • Warm milk

Dislikes:

  • Diaper changes
  • Picc line dressing changes
  • Taking his medicine
  • Baths
  • Lovenox shots

We are so in love with this little guy and can’t wait to get him home. He is developing such a cute little personality and I’m so amazed at how well he’s handling being in the hospital. I guess he doesn’t know any different, but with as much stuff is hooked up to him, he really doesn’t seem to mind it much. I spend my days just hanging out with him all day, trying to have as close to a normal experience as I can with him. His doctors tells us all the time that life after the Glenn will be so much better and I’m starting to get anxious for that. Almost there!

Happy two months, sweet baby Huck! Mama, daddy, and Whitlee love you so much!! 

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 | Update

We have decided to start a Facebook page so that more people can keep up with our sweet baby boy. It’s under Huck’s Heart and this is the link – https://m.facebook.com/hucksheart/

We have also decided to do shirts in honor of him. They will run from now until June 25, then they will ship direct to you from Bonfire. https://www.bonfire.com/hucks-heart/


This is was what was posted on our Facebook on Wednesday. The code happened at about 12:13 AM Wednesday morning. 

Last night our brave little guy took a slight turn for the worse. Yesterday, after all of the chaos from the night before, things had started to calm back down – they let him start eating again, and they had taken him off the ventilator down to an oxygen cannula, and then even down to room air by the afternoon. They wanted to monitor him in CVICU overnight before sending us back down to step down unit. This was blessing #1. Nolan and I fed him last night and got him settled for the evening and then we left to go get a little bit of sleep. About 12:30 AM my phone rang and they told me that Huck had started to code but they were able to catch it in time and they intubated him immediately. They said he was very sick, not quite sure what was going on, and that we needed to get there quickly. I think we made it there in less than 5 minutes. We found out later that basically what happened was that he got very mad and instead of his heart rate going up like it should and then coming back down to normal once he was calm, his heart rate just plummeted and his oxygen dropped dangerously low. They were able to avoid chest compressions because they were in the room when it happened and able to intubate so fast. Blessing #2. They were able to do an echo last night and ran extensive labs to check all of his other organ function and check for infection, but everything looked good and his heart and shunt are all functioning correctly. So currently their theory is that this “crash” was possibly related to one of his medicines. Thankfully they have him stable and although he’s still intubated, he’s breathing above it a little. And they have a plan to adjust his meds and get him “well” again. It’s so crazy to think we were supposed to go home yesterday and this crash would have happened our first night at home if they hadn’t caught the previous malfunction and if they hadn’t been in the room when it started to happen, we could have lost him. Blessings #3 and #4. Again, we are so thankful for where we are and the wonderful nurses and doctors at TCH. Please please continue to pray for our little love!

And this was posted Friday morning. 

Huck had a good calm day yesterday and a good calm night for the most part. He’s starting to wake up quite a bit which irritates him when he realizes he’s intubated. The problem they were having when he coded was that his heart rate wouldn’t accelerate properly and then normalize, it would just crash. So they made the decision yesterday to basically start from scratch. They took him off all of his blood pressure and arrhythmia medication and let his body reset. Throughout the night, he had a few times where he would get mad, but his heart rate actually went up and then back to “normal” like it should have, which is a great improvement! He also had his repeat echo this morning and they all agree that function looks great and has improved from the last echo that had landed him back in the CVICU to begin with. The plan for today is to extubate a little later today, after the echo is formally reviewed and they make sure the rest of the team agrees with the plan. They’re watching him super close while they keep him off the meds so they can see where he’ll settle out naturally after they extubate. This picture is from last night when Huck started to wake up more and he just stared at me and his daddy for the longest time. We are so happy to see his sweet face awake again!

Thank you so much to everyone for sharing and commenting on our page and for purchasing tshirts. I would love to be able to comment back to every one of you but I’m doing good just to get an update posted. 😊 Just know that we appreciate every prayer, every well wish, every thought! Huck’s army is the best!!

Huck’s Heart | Two Weeks Post-Op

Huck was two weeks post op on Tuesday evening, so I thought I’d do a comprehensive post on where we’re at, how he’s doing, how we’re all feeling about things. I normally do a postpartum update for myself but it seems my blog has been getting a little more traffic than normal so I’ll spare the talk about my after birth pains and perineal stitches. (Which have subsided and all is well in that department if you’re interested.)

We are so happy to report that everything has been going really well. It’s been such a blessing to have him progress each day. At one week, we were down to one central line left (a neo picc) that he is currently getting one single IV medicine through. He started with two umbilical artery lines plus three additional artery lines – one in his groin area, one in his wrist, and one in his ankle but they’ve taken them all out one by one. And he finally got his chest drainage tube out late last week!

As far as feeding, they started feeding him milk through an NG tube a few days after surgery to make sure his tummy could tolerate it and then they had occupational therapy come work with him on taking a bottle. A lot of heart babies will have feeding issues because there was a delay in feeding, because they developed an oral aversion from intubation, or sometimes because there was temporary damage to the nerves that control swallowing. In Huck’s case, he is doing exceptionally well (doctor’s words) and making beautiful progress (also doctor’s words). By day 3, he was already attempting bottle #5 and was taking about half of it before he exceeded the time limit and they put the rest in his tube. At 14 days post op, he was taking all feeds by mouth and was up to 50 ml. On day 15, he pulled his ng tube halfway out on his own and they let him leave it out. And then on Wednesday this week they gave the green light for him to start trying to breastfeed. The timing was terrible though so he was a little too sleepy after 7 attempts earlier in the day at a blood draw (s e v e n!!), but we tried again the next day and he did really well. Eventually I’d love to just breastfeed him for convenience but we may be alternating fortified breastmilk by bottle with actual breastfeeding. 

Back to it – so late last week the single ventricle team in the CVICU started their checklist of items to approve him to leave and go to what they call their step-down unit. Then on Tuesday, at 2 weeks post op, they gave the all clear. We are officially out of the ICU!

In the step down, Huck has his own room and this is basically treated as his transition before going home. I’m actually staying in the hospital with him and learning all of his care and more about his temperment so that we know more about how he tolerates things and how he normally acts. I have actually done all of his feedings, diapers, comforting, and oral meds by myself for the last three days, aside from earlier today when I had to run and take care of some stuff in preparation for us leaving the hospital. 

As for going “home”, a lot of it will be dependent on him and how well he progresses with weight gain and taking his feeds by bottle in a timely manner. That, plus straightening out a few arrhythmia issues is our current hurdle but that part is kind of trial and error, treat and wait to see if it’s fixed. But I always say “home” because in our case with him having a Norwood surgery, they’re 99.9% sure he will not go home home until after his second surgery, which is scheduled for mid September. They want us to remain close for what they call the “interstage” period, the time between the Norwood and Glenn surgeries. But they have talked more and more about us leaving the hospital the past few days. They also needed to take him off one more of his medicines, which they did two days ago, and then decrease and transition the last IV medicine to oral, which they did yesterday. He also has to continue to gain weight and not have any other hiccups, but they are tentatively planning for us to go home early next week. Fingers crossed!!

A lot of people have asked how we’re doing and I can say for the most part, we’re okay. We are deeply thankful for how well he’s doing and the progress he’s made every day. But I still have days where it’s hard. Every time we change the new routine, I have an adjustment period in my emotions. Nolan went back to work, I cried. We switched to the step down unit, I cried. I’m sure when we finally get to go home, I’ll cry (although that time may be more from relief). I don’t really do any of that in front of people though.. I tend to have my breakdowns in private, thank God. Just don’t ask me if I’m okay lol.. you have about a 50/50 chance of my eyes filling up with tears before I can answer. I sort of just get a little overwhelmed occasionally until we adjust our sails and move forward with whatever new normal we’ve been given. I think one of the hardest parts is navigating how to be the best mom I can be to both kids. Whitlee came down with a mystery virus last week and thankfully she was at my moms house and we weren’t exposed to it. But we had to leave her with my mom and then my in-laws until she was symptom and fever free for a considerable amount of time before she could come back. I hated not being able to snuggle her while she was sick but we have to be extra extra careful right now; a common cold or stomach bug could be life threateningly dangerous for Huck. Thankfully she came back to Houston a couple of days ago and I am so happy to have both kiddos in one place again. 

So now we’re just learning how to take care of our special little boy and learning his habits so we know what’s normal for him and what’s not. We’re getting a lot of education the rest of the week in preparation and we’re just praying he stays on the right path to get to go home soon!