Huck’s Heart | Counting Chickens┬á


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 | Two Weeks Post-Op

Huck was two weeks post op on Tuesday evening, so I thought I’d do a comprehensive post on where we’re at, how he’s doing, how we’re all feeling about things. I normally do a postpartum update for myself but it seems my blog has been getting a little more traffic than normal so I’ll spare the talk about my after birth pains and perineal stitches. (Which have subsided and all is well in that department if you’re interested.)

We are so happy to report that everything has been going really well. It’s been such a blessing to have him progress each day. At one week, we were down to one central line left (a neo picc) that he is currently getting one single IV medicine through. He started with two umbilical artery lines plus three additional artery lines – one in his groin area, one in his wrist, and one in his ankle but they’ve taken them all out one by one. And he finally got his chest drainage tube out late last week!

As far as feeding, they started feeding him milk through an NG tube a few days after surgery to make sure his tummy could tolerate it and then they had occupational therapy come work with him on taking a bottle. A lot of heart babies will have feeding issues because there was a delay in feeding, because they developed an oral aversion from intubation, or sometimes because there was temporary damage to the nerves that control swallowing. In Huck’s case, he is doing exceptionally well (doctor’s words) and making beautiful progress (also doctor’s words). By day 3, he was already attempting bottle #5 and was taking about half of it before he exceeded the time limit and they put the rest in his tube. At 14 days post op, he was taking all feeds by mouth and was up to 50 ml. On day 15, he pulled his ng tube halfway out on his own and they let him leave it out. And then on Wednesday this week they gave the green light for him to start trying to breastfeed. The timing was terrible though so he was a little too sleepy after 7 attempts earlier in the day at a blood draw (s e v e n!!), but we tried again the next day and he did really well. Eventually I’d love to just breastfeed him for convenience but we may be alternating fortified breastmilk by bottle with actual breastfeeding. 

Back to it – so late last week the single ventricle team in the CVICU started their checklist of items to approve him to leave and go to what they call their step-down unit. Then on Tuesday, at 2 weeks post op, they gave the all clear. We are officially out of the ICU!

In the step down, Huck has his own room and this is basically treated as his transition before going home. I’m actually staying in the hospital with him and learning all of his care and more about his temperment so that we know more about how he tolerates things and how he normally acts. I have actually done all of his feedings, diapers, comforting, and oral meds by myself for the last three days, aside from earlier today when I had to run and take care of some stuff in preparation for us leaving the hospital. 

As for going “home”, a lot of it will be dependent on him and how well he progresses with weight gain and taking his feeds by bottle in a timely manner. That, plus straightening out a few arrhythmia issues is our current hurdle but that part is kind of trial and error, treat and wait to see if it’s fixed. But I always say “home” because in our case with him having a Norwood surgery, they’re 99.9% sure he will not go home home until after his second surgery, which is scheduled for mid September. They want us to remain close for what they call the “interstage” period, the time between the Norwood and Glenn surgeries. But they have talked more and more about us leaving the hospital the past few days. They also needed to take him off one more of his medicines, which they did two days ago, and then decrease and transition the last IV medicine to oral, which they did yesterday. He also has to continue to gain weight and not have any other hiccups, but they are tentatively planning for us to go home early next week. Fingers crossed!!

A lot of people have asked how we’re doing and I can say for the most part, we’re okay. We are deeply thankful for how well he’s doing and the progress he’s made every day. But I still have days where it’s hard. Every time we change the new routine, I have an adjustment period in my emotions. Nolan went back to work, I cried. We switched to the step down unit, I cried. I’m sure when we finally get to go home, I’ll cry (although that time may be more from relief). I don’t really do any of that in front of people though.. I tend to have my breakdowns in private, thank God. Just don’t ask me if I’m okay lol.. you have about a 50/50 chance of my eyes filling up with tears before I can answer. I sort of just get a little overwhelmed occasionally until we adjust our sails and move forward with whatever new normal we’ve been given. I think one of the hardest parts is navigating how to be the best mom I can be to both kids. Whitlee came down with a mystery virus last week and thankfully she was at my moms house and we weren’t exposed to it. But we had to leave her with my mom and then my in-laws until she was symptom and fever free for a considerable amount of time before she could come back. I hated not being able to snuggle her while she was sick but we have to be extra extra careful right now; a common cold or stomach bug could be life threateningly dangerous for Huck. Thankfully she came back to Houston a couple of days ago and I am so happy to have both kiddos in one place again. 

So now we’re just learning how to take care of our special little boy and learning his habits so we know what’s normal for him and what’s not. We’re getting a lot of education the rest of the week in preparation and we’re just praying he stays on the right path to get to go home soon!