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

Huck’s Heart | April Update Part 1


Trigger warning .. if words like mortality rates and information regarding insurance diagnosis codes or hospital outcome data scare you, I would tread carefully through my post. It is all mostly good news for us though. 

One thing I can tell you for sure, being pregnant with a baby that has a critical congenital heart defect, you get to experience ALL the emotions. We were initially told it was “probably nothing, but they needed to check to be sure” and then we were told there was definitely something “not right” so we were sent to a maternal fetal medicine specialist to take a better look. You can read a bit more about all of that here.

From there, Huck was diagnosed with hypoplastic left heart syndrome or HLHS. And then the endless researching commenced. We read things about how 20-30 years ago, this was considered fatal. And that even now, there are still babies that die from it. Some die from not knowing they have a defect so we were so thankful that we knew about Huck’s so early, but some babies die much later from surgical complications or illness that affects them too greatly. The fact that data exists for each hospital on the mortality rates for the first surgery, the Norwood, was scary. Would our baby be one of those numbers? It was terrifying territory not really knowing the life ahead for our baby. 

As mentioned in the first update, we had an appointment with the pediatric cardiologist and he confirmed HLHS and we talked a bit about the plan. Some of you know I lost my job last year when the oil field market plummeted and I was the one that carried insurance on our family. We were forced to obtain insurance through the marketplace just so that our family didn’t go without insurance. We pay a lot of money for very little coverage. Without going on a very emotional political rant and to maybe make a long story a tiny bit shorter, we started finding out that we had some pretty intense insurance network issues. We were sent to a specific maternal fetal medicine and pediatric cardiologist because they were in network but the recommendation from the pediatric cardiologist for standard HLHS care would be at least 3 open heart surgeries, starting the week Huck was born. He said that we would deliver at the hospital he was associated with, UTMB in Galveston, and then Huck would be transferred to Memorial Hermann Children’s in Houston which is affiliated with the UT medical system. UTMB and UT are contracted with each other. I made phone call after phone call ensuring that this was the best option for us and to make sure of who we were/weren’t in network with. I was told we were in network with both UTMB and Memorial Hermann. So we proceeded down that path. 

Now, as a heart mom, you start to learn a lot about hospital rankings and why they are ranked the way that they are. You also see the scariest things like the hospital outcome data that I mentioned. Texas is so blessed to have the #2 ranked hospital in the United States for pediatric cardiology and heart defects, Texas Children’s. It was assumed by pretty much everyone (including us) in the beginning that with such a serious defect, we would be going to Texas Children’s… until we found out we were not in network with them. Again, I made phone call after phone call and even got some help from some family friends that are on the board of directors but it was determined that if we were in network with another children’s hospital that could perform the surgeries, hospital ranking didn’t matter to insurance. We had to go where we were in network, just to simply be able to come out of this not millions in debt. (Yes, millions. Literally.) 

We ended up researching our specific surgeon and found that his credentials were excellent (he came from the #6 ranked hospital in the US for pediatric cardiology) and we loved our current pediatric cardiologist we’d been seeing. We decided it would all be okay, we were placed on this path for a reason, and we felt confident that they would take the best care possible of Huck. We also decided that we didn’t want to do a transport at all so we were going to go ahead and deliver at Memorial Hermann, so that Huck would be where he needed to be. 

And then another bombshell happened. We found out that there was some kind of misunderstanding during all of those calls and were NOT in network with Memorial Hermann either. Come to find out, the insurance plans offered in the marketplace exclude coverage for care at tertiary facilities… like children’s hospitals. We were not in network with a single children’s hospital. Not a single one. I was not prepared for the emotions of having our baby be diagnosed with a critical heart defect but I was damn sure not prepared for the road blocks we were facing. I had no idea what to do from there. I cried ugly ugly tears that day. 

So I started making phone calls again. Phone call after phone call. I was getting pretty good at making phone calls. I made 43 in a single day one day. I finally figured out that in order for Huck to have his necessary care, we would have to request out of network coverage for a tertiary care facility. At this point, we realized if we were about to go down this path, we might as well go for Texas Children’s. So I reached out to all of my previous contacts and got more information and tried to help my doctors office coordinate with my insurance company to get the referral done correctly. Everything seemed to be moving in the right direction. Then we found out that our current pediatric cardiologist had not officially made his recommendation for care. He normally does that after the follow up echo, which we were scheduled for the week following all of the insurance chaos. So it was decided that we would see him for our follow up and get his official recommendation for care in order for the insurance referral to be finalized. 

On March 30, we went to our follow up echo, hoping for at least no change. We were praying that they didn’t see any additional defects or any less function in his heart. We were met with good news! They were able to see a bit more on Huck’s left side than they originally thought. Originally they could not see a significant left ventricle, and could not see the aorta (the main artery that comes out of the left ventricle). This time, they could see both main arteries but they looked to be feeding from a single ventricle. It was explained to us that his potential diagnosis could change. (Side note, all diagnoses given during pregnancy are considered potential because he won’t be officially officially diagnosed until birth and they can get a good echo on him.) He said that instead of hypoplastic left heart syndrome, we could be looking at a variation of double outlet single ventricle, and that he was leaning towards saying it was the right ventricle, (DORV) but wasn’t quite sure. (Remember this part – the fact that he couldn’t commit to saying which ventricle other than it looked to be a single ventricle with a tiny second ventricle was a bit of foreshadowing on what came later.) He said this doesn’t mean anything major except that the urgency of Huck’s first surgery may change. HLHS babies absolutely need surgery within the first week to be able to live, but DORV babies can sometimes wait a few weeks and in less extreme cases, a few months. That would all have to be determined for sure after he is born. But we left that appointment with two things accomplished – we were so glad for even the slightest improvement in potential diagnosis and we also got his recommendation for birth and surgeries to be performed at a tertiary hospital. We got the phone call from my OB’s office that afternoon that the recommendation had been submitted to insurance and that finalized the first referral. And then we waited.

To be continued…

Baby Hillin #2 | 30 Weeks


How Far Along: 30 weeks

Baby is the size of a(n): cabbage. But he had an estimated weight of 4 lbs 2 oz at my ultrasound on Monday, which is what Whitlee weighed when she was born at 34 weeks. Quick little backstory – my OB with Whitlee changed my due date a week ahead because she was measuring big but when she was born at “34 weeks”, her NICU assessment said she was more on track with a 33 weeker, making her original due date accurate. So she was born at 4 lbs 2.6 oz at most likely 33 weeks and everything I read says 4 lbs 2 oz is a more accurate weight of a 33 weeker. So Huck is measuring 2-3 weeks big. This is actually really great because he needs to be born at a significant birth weight to be as ready as possible for his first surgery. 

Gender: It’s a Boy!

Weight Gain: holding at 30 lbs so far 

Belly Button In or Out: Sort of out? One side sticks out a little, the rest is still flat.

Wedding Rings On or Off: On 

Sleep: I have no idea what this word means anymore.. just kidding. After the last week with bronchitis, I have been sleeping h o r r i b l e and still not quite back to normal. 

Best Moment The Last Few Weeks: Finding out Huck is still a big boy! They say it’s just an estimate but he’s consistently measured a bit large. I’ll take it!

Miss Anything: Sleeeeeeep

Movement: His movements are getting bigger and crazier, and I love it. Nolan and I sit and watch him move around a lot and pretty much anytime I lay on my side with my arm resting on my belly, he’s stretching and pushing and kicking against it. With Whitlee, not very many people ever got to feel her but Huck is a little less discriminatory.. he’ll usually kick for anybody if they’re willing to wait a minute. He’s also been getting the hiccups a lot (way more than Whitlee ever did) and Nolan has even felt them from the outside. Whitlee also got to feel him move a few days ago. She lit up when she felt it and said, “brudder Huck kick me!” She also got to see him on ultrasound and we could see him blinking so she tells everyone he was winking at her. Cutest thing ever! 


Cravings/Aversions: Craving crawfish and cucumbers. Not together. 

Symptoms: SPD pain is a little better since I’ve been resting more. Nothing else too crazy except peeing my pants a little pretty much anytime I sneeze or cough. Just keeping it real. 

Additional Notes: Well I failed my 1 hour glucose test and they had me take the 3 hour……. which I also failed. 😑 The 3 hour test was pure torture and I felt miserable afterwards, plus I was sick that whole week and have been pretty down. It seems like God is really testing me right now to see just how much I can handle at one time. HLHS diagnosis, high risk for preeclampsia (still doing okay there), my grandfather died the end of February after a very long battle with multiple myeloma, our entire family has had some kind of really bad run of bronchitis, and now gestational diabetes. Hoping for good news or a silver lining to help lift my spirits a little. 

As far as the gestational diabetes goes, they’re having me monitor my blood sugar several times a day to keep it under control via diet, but my fasting number is always really high. My OB says they’ll give me a week to hopefully regulate it but I will potentially be put on an insulin shot before bed that will help. One shot is better than 3 or 4 I suppose so if it helps, that’s what we’ll do. A couple of people (not my OB) have mentioned that might be why Huck is measuring big but it’s not necessarily true. He’s actually been around the 70-75th percentile which is fairly normal, just a tad on the larger side and is on track to weigh around 8ish lbs full term. I actually only failed my glucose test by 2 points on the fasting draw, and 1 point on the second draw of the 3 hour test so I’m borderline diabetic. My fasting number is really the only hiccup at this point. 

I guess some good news is that preeclampsia worries are okay for now. Blood pressure is pretty stable. It did get a little wonky while I was sick but I was always able to get it back down. I also got some urinalysis strips because I’m crazy and now I check my urine every day. So far, so good on protein. I’m not swelling much at all and my weight is doing okay. I’m trying to be diligent in paying attention to any changes so we can get a handle on it super early if it’s going to happen again. I think with Whitlee I started showing signs at this point but didn’t realize it. I had already taken my rings off and my feet were starting to swell pretty badly. 

So we’re in the 30’s! 9 more weeks to go. I’m so looking forward to experiencing pregnancy past 34 weeks. I might be eating my words later but for now I’m looking forward to it! 

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. ❤️💙