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 Inlow


Huck Inlow Hillin entered the world on Saturday, May 13, 2017 at 10:09 PM via successful VBAC. He weighs 6 lbs 11 oz and is 20″. 

We are both doing well and should have a plan for his heart in the next day or so! We are all so in love with him and can’t believe how good he looks and how calm he is. He is very alert and seems to be tolerating his procedures pretty well!

Full birth story coming soon!!

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! 

Baby Hillin #2 | Gender Reveal

We found out that the weather forecast here in Texas for this weekend was probably the worst weather we’ve had all year, intensely cold and thunder storming, so we moved the gender reveal up to this evening! We shined all of the headlights out on our little box of tannerite and colored chalk, and Nolan shot it with a rifle. It was supposed to explode into this amazing cloud of blue or pink chalk. So they yell “fire in the hole!”….anddddd…. nothing happened. 

He shot it over and over and over (yes, hitting it every time) and that sucker never exploded. He finally broke through the box and the chalk puffed enough just to show the color…. and Baby Hillin #2 is

a BOY!!


I wish I could show y’all a super awesome video but since we moved it up so quickly, it was a little hectic and then we had a faulty batch of tannerite, so it wasn’t that super impressive of a display. But everyone got the idea and we are all so excited!! The video of our little puff of blue is on my Instagram if you care to see it. 

Oh and our baby boy’s name! 

Huck Inlow 💙