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’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 | 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! 

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!