Huck | 11 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
  • 4 Months – 5889 grams | 12 lbs 15 oz
  • 5 Months – 6840 grams | 15 lbs 1 oz
  • 6 Months – 7530 grams | 16 lbs 10 oz
  • 7 Months – no official weight check, but somewhere in the neighborhood of 17 lbs
  • 8 Months – 18 lbs even
  • 9 Months – 18 lbs 10 oz
  • 10 Months – 19 lbs 6 oz
  • 11 Months – 19 lbs 11 oz

Still wearing size 4 diapers and we finally moved on to mostly 12 month clothes. We also had to switch back from Luvs to Pampers because he kept having poop blowouts every single day. On the floor, on the rug, me, him, the couch, many toys… the list goes on. 😑

Eating: No major changes here, still doing Nutramigen formula and baby food/solids. Still eating quite a bit throughout the day and has finally dropped a couple of night bottles most nights. I started making sure I was tanking him up during the day and I think that helped for the nighttime.

Food Likes:

  • Puffs
  • Cheerios
  • Bananas
  • Beans
  • Peanut Butter is still his fave
  • Potatoes
  • Pizza

He doesn’t seem to be a huge fan of meat. He doesn’t make a face or anything but it’s like he’s not really sure what to do with it, like it’s not something you’re supposed to swallow. So he’ll chew on it and play with it but then spits it out at some point.

But he love love loves to eat anything anyone else is eating. Doesn’t matter if you’re feeding him the exact same thing, he wants your food.

Sleep: Lately we’ve been having the tiniest bit of progress with sleep. Like I said, I’ve been filling him up on food like crazy during the day and right before bed time and I think it’s helped him go mostly through the night. We usually put him down around 7:30 PM and he’s made it until 4/5 AM several times now. He usually still needs a bottle or some type of comfort and he’ll go back to sleep until 7/7:30. And the night we rolled over 11 months, he actually slept through the whole night for the first time since we’ve been home from the hospital!

Milestones:

  • Walking more confidently
  • Squats and stands on his own
  • Takes off from standing or from the furniture on his own
  • Can climb on things 🙈
  • Finally says mama!
  • Waves Bye Bye all the time now
  • Claps and says “yay”
  • Has become quite the little chatterbox, sounds like the Tasmanian devil when he gets mad and is talking his gibberish

Medical Milestones

We’re still going to physical therapy once a week but I think we’re alllllmost done.

Likes:

  • Maggie (our dog)
  • Any dog, really
  • Being outside, always
  • Being out at the shop
  • Banging objects together
  • Snuggling with his blanket
  • Whitlee’s Jeep
  • Walking
  • His little ride-on car
  • Turning faucets on and off
  • Flushing the toilet
  • Shutting the dryer door
  • Biting 😆

Dislikes:

  • Being cold
  • Having a dirty diaper, he wants to be changed almost immediately
  • Getting his face wiped
  • Getting his diaper changed
  • Having something taken away from him
  • Physical therapy

My oh my, the personality that has emerged this month has been something else! Huck suddenly became the silliest, craziest, mischievous, snuggliest little boy. Lately if I catch him with something he isn’t supposed to have, he smiles and squeals, then runs from me! He’s also learned how to flush the toilet, so add that to his love for unrolling the entire roll of toilet paper and his sudden talent of climbing on Whitlee’s potty stool, he has recently been banned from the bathroom. He’s also started biting, not out of anger, but because he thinks it’s funny when you react to it! He’s wild, y’all.

Speaking of, his birthday party is coming up so soon. We’re doing a “wild one” theme, which I think is ridiculously appropriate at this point, but I seriously can’t believe it’s already almost been a year. So many things to reflect on, so many things to be thankful for, and so many things to look forward to.

Happy eleven months, big boy! You are almost ONE!

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The Day Everything Changed

Today marks one year ago that we got confirmation of Huck’s heart with the fetal cardiologist. But the day everything changed was January 20. That day, we made that hopeful drive to Galveston, praying there was some mistake. That maybe our normal OB’s ultrasound machine wasn’t clear enough. Or maybe Huck was just laying weird and they couldn’t get a good shot of a whole heart. I remember thinking, “This isn’t really happening. This doesn’t happen to people like us. This is all just a mistake. A fluke.” While we sat on the ferry, we didn’t get out and sightsee like most people do. Instead, we sat in the car and googled heart defects. We knew what worst case scenarios were and we read words like “mortality rates” and “survival rates”. We vaguely knew what hypoplastic left heart syndrome was and we knew that a single ventricle defect still has mortality rates. I had a copy of the insurance paperwork from my OB’s office but I couldn’t make myself look at it because I was scared of what it might say. I didn’t know it until much later but the diagnosis codes were listed there, one of which was “apparent life threatening event”. We went to that appointment hoping for the best but prepared for the worst.

They called us back and we had the most in depth ultrasound ever. The tech took the time to show Nolan the things he’d never really gotten to see before, chatting with us the whole time. We saw his hands and fingers, feet and toes, his face and lips, all of his bones. And when she switched over to his heart for the echo, she went dead silent. We squeezed each other’s hands and we knew something was wrong.

They told us before that appointment that we would have the scan and then the maternal fetal medicine doctor would talk to us – good or bad, we would have answers before we left. The tech got up and left the room and we talked about how strong his heart looked. That there was one part that was just ticking away, so strong. We found out later that was his one good valve, which was strong. The doctor came in, sat down right in front of us so that he was at eye level, and said “we think your baby has hypoplastic left heart syndrome”. I swear it was like something in a movie. It felt like everything got really fuzzy around the edges and I was hearing him but I was simultaneously scrolling through my brain of everything I’d read about HLHS and how everything in our life just shifted. In one sentence, our world changed.

We were told that we would be referred to a fetal cardiologist, who confirmed HLHS one year ago today, but like most of you know, we later found out with our rockstar fetal cardiologist at Texas Children’s that Huck has his own rare combination of defects making up his single ventricle physiology. He’s not a straightforward HLHS baby; he has most of the same characteristics, but with a few additional defects complications. (As a reminder, Huck had ventricular inversion with a hypoplastic left-sided right ventricle, tricuspid atresia, a hypoplastic aortic arch, congenitally corrected transposition of the great arteries, a vsd, an asd, and a very large pda. On paper it was listed as 7 different defects.)

We left there in rough shape. I don’t think we’d ever been so sad before in our life. I remember we tried to eat lunch but neither of us had much of an appetite. We were driving down the seawall in Galveston and I think we both saw him at the same time. I heard Nolan say “oh no” but it was too late. I’d already seen him. There was a dad waiting to cross the street, with a happy little baby boy in his arms. Something relatively small, but we both completely lost it. Nolan was on the phone with his dad and he just handed me the phone and I managed to choke out that we’d call them back. We had no idea how we were going to make it through this. But here we are, one year later and we’ve survived so far. And we’re home and happy and Huck is doing great, all things considered.

Yesterday he had a cardiology appointment and an echo to recheck the potential arch narrowing and his heart function. I’m so relieved that we found out that his echo showed almost zero gradient in his arch, which means no narrowing and no cath lab! His ventricle function is still the same – mildly depressed – and that may either stay the same or may still return at some point. His cardiologist was able to check out his consistent retracting that we’ve been noticing for a while, even when he’s very clearly not in distress, and she determined it’s not from respiratory distress, but mechanical from the way his sternum and ribcage healed from his two surgeries. We’re weaning his enalapril, discusses plans for the future, talked a little about his Fontan, and got released to visits every 6 months. Oh, and his saturations were holding steady at 89! I’ve been so anxious for this appointment, especially with it basically being the one year mark from THE day, but I left there feeling like a huge weight has been lifted off my shoulders.

This time last year was so hard on us. But this year, things are looking pretty bright. ❤️

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rt #ToughLikeHuck #1in100

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’s Heart | Questions


We’ve had a lot of questions and I thought this might be a good place to answer some of them. A lot of these are generalized for now but will be more detailed plans once we see Huck’s doctors again in March. Right now they just want me to stay. pregnant.

What will happen when he’s born?

As soon as he’s born, they’ll make sure he’s stable and get him to the NICU. He’ll have some things to help him remain stable until his first surgery, like prostaglandin for his lungs, and they’ll do testing and heart echos to get a 100% sure clear idea of how his surgery needs to go. He’ll have his first open heart surgery (the Norwood) within the first week. Second surgery will be at 3-6 months and third surgery will be at 2-3 years old. His most critical time will be the time between first and second surgeries.

When will he get to go home?

They said he’ll get to go home after a few weeks barring any additional complications but our house will be like a mini hospital and we won’t be going many places, if any. We will have to be diligent in limiting visitors and making sure they’re not sick. If he’s around anyone remotely sick or anyone that smokes, it could literally kill him.

How common is HLHS?

HLHS is pretty rare, and according to the CDC, less than 1% of babies born in the US have it which is about 960 babies each year. Congenital heart defects as a group affects 1 in 100 babies. #1in100

What causes it?

They’ve told us that it’s mostly hereditary, but since we don’t have a family history on either side of any type of congenital heart defect they think in our case it was sporadic. Sometimes if the mom doesn’t know she’s pregnant for an extended amount of time, certain medications or lifestyles (drugs, alcohol, smoking) can cause it but we knew we were trying and we knew I was pregnant prior to a missed period, so I was extra careful even before we found out. Not that I do drugs or smoke but I have an occasional beer that I refrained from, starting when we started talking about baby #2.

Where will I deliver? 

We live in a small town about 45 minutes from our current OB. We live about 2 and a half hours from where his surgeries will happen in Houston, Texas. I will deliver at the same hospital his surgeries will happen at. We actually have to pick a new OB but that decision will happen after our next appointment with the pediatric cardiologist when we discuss detailed surgery plans and it will also depend a bit on our insurance. Some of you know I lost my job in June of this past year and with that, I lost our insurance coverage. We had to get coverage privately and it has limited the places that accept us, plus being high risk. I’m currently remaining under the care of my original OB and they’re aware of the situation and going to continue monitoring heavily for preeclampsia and checking growth patterns on Huck. They’ve actually increased my visits a little bit and have said they’ll see me every day if need be.

Will he be able to live a normal life?

For the most part, yes. It’s all based individually on each child with HLHS but we have every faith in the world that our boy will get the best care possible and once these doctors perform these miracles on him, he’ll be no different than any other little boy. He probably won’t play sports or run marathons, but let’s be honest… Nolan and I aren’t really sporty people and if you see me running, you better run too because something is chasing me. I’m sure he’ll have plenty of hobbies otherwise. Nolan already talks about hunting and fishing with him. 😍

If you have any other questions, please feel free to ask. I’m glad to answer them if you’re curious. I won’t find anything offensive and to me, it helps to raise awareness about HLHS and congenital heart defects. A lot of HLHS cases are individually based on the specific child so every story you read on the internet is different. Also, February 7-14 is congenital heart defect awareness week.

I also wanted to say a sincere and huge thank you to all of the support we’ve been receiving lately. My mom started a Go Fund Me and I have cried more than once seeing the donations from people we know. My mother in law has cooked dinner for us so many times in the last few weeks and it has been great to have one less thing to think about. My  sister in law and brother in law donated the proceeds from a garage sale we had last weekend to help with expenses and my dad and stepmom are planning a benefit event and raffle in April. And just the rest of our family, friends, and community have been amazing at showing their support and offering help and prayers. I’ve had so many people text just to say we were on their minds and I think we’re on every church prayer list in southeast Texas. The amount of gratitude we have is unexplainable. So thank you from the bottom of our hearts. 

Huck’s Heart | CCHD Mama

I feel somewhat like I’ve been hiding something from my blog friends but this has been a hard post to write. I’ve actually started and erased several times but now that we know where we’re headed, this will become my place to not only track and record the rest of my pregnancy but the journey of our sweet baby Huck. This post is long but getting to this point has been sort of long in real life already, and we have even longer roads ahead of us. 

January 20th is a day we won’t ever forget. That’s the day they told us our baby only has half a heart, unofficially diagnosing him with Hypoplastic Left Heart Syndrome (HLHS). We knew after our anatomy scan a couple of weeks ago at 20 weeks that something was off but our OB’s office reassured us that it was probably just a positioning issue or that he was too active, and they scheduled us to come back to check again at 22 weeks. I researched fetal hearts to what I thought was an insane amount so when we went back I knew what his heart should look like. When the scan started, and she checked his heart, I knew it wasn’t all there. Without recounting several conversations with different office staff word for word, I’ll say that my doctors office treated me very poorly that day, doing a follow up scan without plans in place for there being a problem. They apparently intended to do the scan and send me home to wait for a phone call, whenever that would be, but after I demanded some kind of answer and they sent me out to the waiting room basically in hysterics, they somehow tracked down my doctor and had him review the scans and he simply sent his RN to talk to me. My family and I are all so appalled at their lack of compassion when they clearly knew there was a critical issue. It makes my blood boil to even type this much of it. The RN ended up telling us they were referring us to a Maternal Fetal Medicine doctor for a level 2 ultrasound and fetal echo. We weren’t sure how soon this would happen but she said she marked the paperwork “urgent”. 

The next day we got the phone call that we’d be seen in two days at UTMB in Galveston, Texas. I had been praying it would be fast, but was pleasantly surprised at just how fast.

On January 20, we left bright and early and drove 2 and a half hours to Galveston to our appointment. Everyone there was so insanely nice and understanding. The tech started the ultrasound and explained every single thing she was taking pictures of. She got in depth measurements of so many body parts and organs, again confirming he’s a boy (fourth check now) and helping Nolan understand exactly what he was seeing on the large screen on the wall. He’s never had anyone take the time to show him and he’s always a little unsure of what he’s seeing, so ultrasounds haven’t been that exciting for him. But this time because of the time she took and the quality of the machine, he saw everything from 5 little toes and 5 little fingers to lips and nose. We even saw Huck playing with his toes and putting his hand in his mouth. We saw him opening and closing his mouth and flipping around like crazy in there. When the tech switched over to the fetal echo and started on his heart, she went silent. We knew then something was truly wrong. She scanned and took pictures for well over 30 minutes then left to get the MFM specialist. He came in and looked at the ultrasound machine with the tech, asking for specific views himself. He asked if we had any family history of congenital heart defects and we said no. He left to get a book of pictures and brought them back to us. He showed us a normal heart and then an HLHS heart and explained that he either did not have a left side or that it was severely underdeveloped. He said he was referring us on to a pediatric cardiologist and they would try to get us in very quickly with him as well. That visit would be in Pearland this time, which is two hours from us. We asked a few questions about how it happens, what his outcome would be and what life would be like for him. He explained the best he could that sometimes it’s genetic and sometimes environmental and sometimes just random chance. He said Huck would need a series of (hopefully) three reconstructive open heart surgeries starting when he’s born and ending when he’s a toddler. He said that 20 years ago this defect was fatal. But they’ve come a long way with this reconstructive surgery series and now babies are living into their 20’s. There isn’t much data past that because it hasn’t been around long enough. He was optimistic that while he probably wouldn’t ever be an athlete, he had chances to live a fairly normal life. 
From there we notified family and close friends about what we’d found out and waited for the phone call about his next appointment.  

We got the call on Monday the 23rd that our appointment with the pediatric cardiologist would be Thursday the 26th. I made a list three pages long of questions I had. I knew some of them wouldn’t be able to be answered just yet until we find out about my OB care.

So today we saw the pediatric cardiologist and got confirmation that our sweet baby boy has been diagnosed with Hypoplastic Left Heart Syndrome. We were able to ask a lot of the questions we had about his quality of life (which should be fairly normal once he’s past the surgeries) but mostly just confirmed the diagnosis and treatment plan which will indeed be the three part series of reconstructive open heart surgeries, starting when he’s born. We felt really comfortable with the cardiologist and his experience specifically with this defect. He currently has a 27 year old patient surviving with it and doing well. Right now our doctors and his surgical team are making plans for Huck, monitoring both of us, and we will find out more a little later around 30 weeks. 

The goal of utmost importance right now is keeping me pregnant as long as possible. So we’re praying the preeclampsia stays at bay this time and a full term baby boy. That will give Huck the best shot at his life. 

I posted today on Instagram and now here, but I put that I debated if and when to start posting about everything but we want to celebrate his life and my pregnancy with him just like we would have otherwise. I will still continue to do my updates every 3 weeks and more updates on his heart as they happen. We still have a lot of unknowns to face and a long road ahead but we appreciate any thoughts and prayers sent our way. 

Thank you so much to everyone that has known about this so far for keeping us in your thoughts. We feel surrounded by love and know that we’ll be bringing Huck into a world that loves him so much already. ❤️💙

Baby Hillin #2 | 21 Weeks


How Far Along: 21 Weeks

Baby is the size of a(n): banana.. or according to the Ovia app, a baseball cap

Gender: It’s a Boy!

Weight Gain: At my 20 week appointment, I had gained 17 pounds and was measuring 21 weeks. So I’m sure I’m up a pound or two and up a week as well. 

Maternity Clothes: Oh man. This has become a struggle. I so didn’t want to buy anymore maternity clothes but my jeans from pregnancy with Whitlee don’t really fit as well and I’m seriously outgrowing shirts at rapid pace. I’m still trying to pair non maternity and maternity but this belly is large. 

Belly Button In or Out: In, flatter by the day. 

Wedding Rings On or Off: On

Sleep: I sleep really hard, but still getting up to pee a lot and the SPD bothers me when rolling over but I’m making it. 

Best Moment The Last Few Weeks: Feeling a few kicks from the outside!

Miss Anything: Nothing, really. Just trying to enjoy it the best I can. 

Movement: Getting stronger. I actually felt him from the outside for the first time on New Years Eve, literally just after midnight. I guess he was ringing in the new year! This is your year, baby boy! I’ve since felt him from the outside just a few times. Currently his head is up near my ribs on the left and I still feel fluttery feelings there but his feet are down low to the right and he kicks a lot there. I found out I have an anterior placenta again, they didn’t mention low lying this time, but the placenta could be blocking some of his movements. 

Cravings/Aversions: I don’t think I’ve had many strong cravings lately. I do seem to like sweets a little more this pregnancy than last, which is way backwards on old wives tales. Oh and tator tots from Sonic have been tasting like dirty sink water to me lately but I’m not sure if that’s a pregnancy thing or a Sonic thing. 

Symptoms: Well, I’ve been having some increased spd pain, so bad that sometimes it’s so painful to walk for a few steps and then it eases up. And the Braxton Hicks have gotten a little crazy. I had the same exact thing happen with Whitlee at this point last time and thankfully my cervix went unchanged. I ended up getting checked this past week because over the weekend between 20 and 21 weeks, the BH were way too close together, way too frequent. Cervix was good.. hard and closed and measured 4″ at my last ultrasound. I’ve been drinking more water and trying to rest more but it may just be that I have an irritable uterus and I may have to get cervical checks more often to be on the safe side. 

Additional Notes: I try to make sure I record everything because it’s actually been really helpful to be able to read posts from Whitlee’s pregnancy and know what’s normal for me and what’s not. At Huck’s anatomy scan, I mentioned he was extremely wiggly, which is sort of crazy because I just don’t feel him as much as we saw him. He does seem to move more when I lay on my back, like for ultrasounds or when they measure my belly and check heart tones so maybe that’s why he was so active. But they called last Friday and said “nothing to panic about, it’s completely common for this to happen, it’s a super hard shot to get, especially if baby is really active… but they weren’t able to get a good picture of his heart and didn’t see all four chambers.” They want us to come back in two weeks from that, which is this coming Tuesday. We’re praying that he was just too active and that nothing is wrong with our baby boy’s sweet little heart but I can’t help but be a little nervous. Heartbeat was good and strong and he’s measuring a little ahead so they said those were great signs. I’ll try to update after that appointment. Nolan is more logical than I am, but he’s probably right – he thinks that if it were something bad, they would have gotten us straight to the level 2 ultrasound or called us in immediately. Supposedly there’s a lot of growth between 20 and 22 weeks so that may help them see his heart a little better. My appointment is also in the afternoon vs the morning so maybe he’ll be more relaxed and still for them. 

Other than that, things are going well. Just hoping we can make it full term this time! I can’t believe we only have about 4 months left!