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 | Counting Chickens 


What you don’t see in these pictures – Huck basically hugging my hand with both of his hands, this momma losing her mind, sobbing uncontrollably over what might be happening, and the team of doctors flying around us setting up machines, placing lines, and making a lot of very fast paced decisions. 

Earlier this week, we started the discharge process with plans of getting to go home today (Wednesday). It’s basically the same situation with switching from CVICU to step down unit; they have a single ventricle checklist to make sure he’s ready to go which is really just a lot of testing, blood work, and regular baby milestones. When we left CVICU the first time, a week ago, one of the checklist items was an echo (an ultrasound of his heart if you’re new around here), which looked great, so off we went to our new digs. To get discharged, it’s a similar process – he had to gain weight appropriately, eat a certain percentage of his bottles, get an echo, get a brain MRI, get a chest X-ray, we had to get various education sessions, pass a car seat test, I mean really the list keeps going. But these items are in place for a reason and thankfully, Huck had his “go home” echo yesterday afternoon, just to make sure his heart was functioning okay. 

While we waited on the echo to be read, we proceeded with the next item on the list, his car seat test, which he passed! This is just a test where they make him sit in his car seat for two hours and make sure he won’t lose oxygen or stop breathing or anything strange. 

While he was getting car seat tested, Nolan went to get us some dinner from Cliff’s Grill. (Which I highly recommend if you’re in the Medical Center area. Their southwest burger is amazing!) We hadn’t even taken the first bite of food when suddenly, half of his single ventricle team came walking in the room. 

They explained somewhat quickly that between the last echo a week ago and the new echo, they noticed part of his single ventricle was not squeezing the way it should. They called it “mild to moderate”, with “severe” basically being heart failure. Thankfully it was noticed before the point of heart failure, and additionally all of his stats and monitoring were considered perfect and he acted completely normal and calm, which they said was all very confusing to them. They wanted to do a CT scan to figure out exactly what was going on. They thought there might be an issue with one of his coronary arteries which would have been indicated by the ventricle not squeezing properly. They explained that for the CT scan, they had to do a breath hold to get the perfect picture, which means he had to be reintubated so that they could manually make him hold his breath. To do all of that, he would also need to be sedated, so via standard protocol, they called in the rapid response team to transport him back to the CVICU. 

At that point, we were told a broad spectrum of what to expect – this could end up being nothing, if there was something wrong with the artery, they could possibly do a catheter procedure to fix it, if there is a major problem (which they did say was unlikely based on his appearance, stats and behavior), they’ll have to take him back into surgery, open him up and fix it. We knew in the back of our minds that he could also crash at any time during this process if there was truly something wrong. So I stayed with him the whole time – while they transported him, sedated him, intubated him and took him for his CT scan. I will truly know this kiddo inside and out before he’s even a month old. 

The CT scan was very quick. Apparently TCH has a top of the line CT machine and people come from all over the world to use it because it captures things in mere seconds. Huck’s entire heart function was captured in less than 5 seconds. They told me in the CT room that the radiologist was at home but waiting on our scans to come through and would read them asap and get back to us within an hour or so. 

About 15 minutes after we got back in the radiologist called and said his CT was perfect! Our baby boy has pulled out the stops once again! I cried for the hundredth time that evening, so thankful that he was okay. They extubated him late last night when the sedation started to wear off and he was put back on an oxygen cannula for the time being. He is doing well right now, a little grumpy and uncomfortable but I’m hoping he’s back to his normal sweet self very soon. 

We are incredibly thankful for the team of people at TCH that double check and triple check before sending you on your way and for our surgeon and his team who are absolute angels for saving our baby boy’s life. My sweet husband also deserves some recognition for being my rock through all of our tough times. He has taken on our wild Whitlee so that I can be with Huck right now and he’s managed to keep his sanity through all of it, while keeping me in the right mind set too. 


We’re currently waiting on the doctors to round so that we can find out exactly what they think they saw, why it’s okay now, and what the plan is going forward. This was a temporary setback in our journey home, but I can’t even tell you how relieved we are right now after a whirlwind emotional night. 

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