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

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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!