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 Inlow | Birth Story


I feel like Huck’s birth story starts where Whitlee’s left off. You can read her birth story here but the gist of it is that I was diagnosed with preeclampsia at 34 weeks with her and my doctor decided she was safer out than in so we did an emergency cesarean with her. When we decided to have another baby, I had a pre-pregnancy consultation with my new OB and he advised us to absolutely pursue another baby and that while I did have one or two risk factors for having preeclampsia a second time, I didn’t have all of them. At that time we also discussed the possibility of a VBAC. In Beaumont, at the hospital where we would deliver, there are a handful of doctors that share on call duties. So while my OB was considered “the VBAC guy”, he said one of his requirements was that I go into labor spontaneously because he had no record to go on of how I would react to an induction. He wouldn’t induce for a VBAC unless I’d been previously induced or had a previous spontaneous labor. And on that note, promising to support a VBAC with spontaneous labor would put me at risk for showing up at the hospital with a 1/5 chance of him being there and a 4/5 chance of having a doctor that did not support my birth plan. So at that point, we agreed to a repeat cesarean and I felt peace knowing that it would be scheduled and we would know what to expect. 

When we actually got pregnant with Huck, we went into it knowing he’d be born via repeat c section and it would most likely be scheduled and hopefully be full term. But then we found out about his heart defect, we had to transfer care to the facility where he would have his treatment. During my first visit with my new doctor, a Maternal Fetal Medicine specialist, we discussed my plans for delivery. At which point she casually asked “so for delivery, would you like a repeat c section or would you like to tolac?” I asked what was best for our situation and she very matter of fact laid out the risks of both but then said a vaginal recovery would be better and faster for me and would also be beneficial to Huck’s lung function. So we went down the path in pursuit a tolac/hopeful vbac. She said that spontaneous labor would be best but that depending on my blood pressure staying stable throughout the pregnancy so that we could make it to the point where my cervical conditions were favorable, she was not opposed to inducing. 

All throughout my pregnancy I have been on a low dose blood pressure medication because around 8 weeks it started creeping up. They labeled me as having “chronic hypertension” but my blood presssures have been really great since being on the medicine. Towards the end of my pregnancy, they’ve had me check it twice a day and keep a log. And they’ve continued to be excellent, as well as no signs of preeclampsia- no swelling, no vision changes, no excessive weight gain, no weird headaches, no protein in my urine. From here it will be a timeline to show how this all happened. 

Thursday, May 11, 2017 | 7:30 PM – At 38 weeks, I checked my pressure for my log that afternoon and it was a little high. I rested, checked it again and it was much better. So I kept resting and decided to check it again later to make sure it stayed down, but it was actually back up again. I called my nurses line and the advised me to go get checked at L&D. While there they hooked me up to the monitors and checked blood pressure, which was high and it didn’t take long before they decided to keep me and induce. I started calling Nolan and my family but after a good while of monitoring, the doctor on call came back in and said my blood pressure was a lot better and they were actually going to send me home. What a rollercoaster! I called everyone back and told them it was a false alarm.  

Friday, May 12, 2017 | 8:00 AM – Whitlee and I went to what would have been my last appointments anyway since they were planning to induce next week, but my blood pressure was high again. We went through all of the normal appointment stuff but my doctor ended with, we ARE going to go ahead and induce today. She said their standard care for chronic hypertension is to deliver at 38 weeks, but since mine had been so great she was willing to go to 39. She also said at this point, it was possible that if I stayed pregnant, I could end up with preeclampsia in the next week. 

9:30 AM – She told me to go get my stuff from the apartment in Houston and to be back around 11 to start the induction. I called Nolan and the rest of our family so they could all head that way. 

11:15 AM – Whitlee and I got to hospital to get checked in for the induction process to start. Unfortunately, May is apparently a busy month for babies so they were extremely backed up in labor and delivery and we had to wait F O R E V E R for a room. Like 10 hours. 

9:00 PM – We finally got moved to a labor and delivery room to get set up. After that, it seemed like things went fairly quick for the most part. At this point I was dilated on my own to a 1, maaaaybe a 2 and 50% effaced but Huck was still really high at a -3 station. 

10:40 PM – They decided to start with a Cook Balloon which they insert into the cervix and inflate one small balloon inside the uterus and one small balloon outside the uterus with a middle section meant to dilate the cervix manually. They said we would leave it in for 12 hours, then take it out and from there I would either be dilated to a 4 or 5. The balloon going in hurt. like. hell. Oh man, it hurt. 

12:00 AM (Midnight) – They warned me I could feel some strong cramping and then it was possible that the balloon would intensify the prodromal labor contractions that I’d already been having. Well it did and they started coming super strong and I puked during a particularly hard one. It was at that point that I honestly started questioning this whole vbac thing. I ended up getting two Benadryl to help me sleep and nubane in my IV for pain. The nubane didn’t do much for the pain of the contractions but it did help me sleep between them. So basically I was already having to work through the contractions. They were super strong and I couldn’t talk through them but never very consistent. Some were 4 min apart, some 6, some 12 but all lasting about minute and a half to 2 minutes. 

May 13, 2017 | 8:30 AM – The residents for the day came in and said I’d get the balloon out in a couple of hours, then we’d start low dose pitocin, check to see how low Huck was at that point and if he was low enough, they’d break my water. I went ahead and requested an epidural before all of that business. I’ve heard from several people to get. the. freaking. epidural. I was told pitocin contractions plus no amniotic fluid for cushioning after they break my water is no joke. 

11:00 AM – They took the balloon out and checked me. It did its job! I was dilated to 5, and 60% effaced, but Huck was still at -3 station, so they were going to wait on breaking my water. 

1:00 PM – Anesthesia came in to place my epidural, while my nurse (who was absolutely the most amazing labor and delivery nurse ever) got my pitocin set up. I didn’t care much for the epidural process. I was kind of scared of the pinching pain I’d felt suddenly when I had my c section so I kept having trouble not tensing up. But my nurse just talked me through it and we got it in. Once the epidural was in and I started going numb, I started feeling really bad and proceeded to puke again. I was actually pretty numb from about mid belly down so that was weird. When I puked, I felt like my stomach muscles were numb and almost like I would aspirate. After they started the pitocin, I was having contractions almost immediately and very regularly but I couldn’t feel them. General thoughts on epidurals –  they’re super weird and glorious. 

3:00 PM – Huck had a few heart decels so they came in and put me on an oxygen mask and checked me again and I was still a 5 and now 80% effaced, but he was at a -2 station. They decided to go ahead and break my water and see what would happen.  

4:30 PM – I was able to actually catch a nap between 3 and now and when I woke up I asked my mom if I was still having contractions. She said oh yea, definitely, so I got her to take a picture of the screen because it was above my head and I couldn’t see it. 


This is showing how fast and regularly the contractions were coming but if you look at the top section towards the end, you see Huck’s heart start to drop off. I actually heard this happening on the monitors and said “something’s wrong” and about 5 seconds later my nurse came running in and kicked everyone out except Nolan. She called for a resident and another nurse. They threw my bed back, flipped me to my other side, started pulling iv lines loose from their connectors (not like from my arm), and started massaging my belly a little. After about 5 minutes his heart rate recovered. They said that the contractions were basically drowning him and his heart rate wasn’t recovering like it should have between them. They decided to stop the pitocin and give him a break for a little bit. They also decided to put in an internal monitor to see how strong my contractions were and would start the pitocin again in 30 minutes. At that point, they said if that happened again, we’d go straight back for a c section. By this time it was almost 5:30 so they went ahead and checked me again and said I was still a 5 and 80% effaced, no change at all. But they asked some specific questions about how I was feeling and I told them I was starting to feel my contractions. I was kind of having to breathe through the pressure of them but I couldn’t really feel the pain of them. They said they’d check me again at 7:30 and see how things were going. I think that was the point that I said if I hadn’t changed by then at all, I was ready to talk about another c section. The heart decelerations scared me and I was so tired. I’d been stuck at a 5 for 7 hours or so and the problem I had with that is my body didn’t go to a 5 on its own, it was a mechanical dilation. So if I wasn’t progressing past that, then my body wasn’t doing its job. 

7:30 PM – The resident came back in to check me and I was fully expecting her to say “no change” but she felt around a lot and then looked up and said “well, looks like you’re at a 9, 100% effaced.” I started crying out of pure relief. I could not freaking believe it. I asked “Are you serious?? Are you sure??” And she said “Yup! Your cervix is almost completely gone.”  He was still at a -2 station though so while my body worked through the last bit of cervix, they had me sit straight up and let him start laboring down so I could get ready to birth our boy! My nurse started getting the room ready for delivery and they made all of the appropriate calls to the NICU and cardio team. 

9:47 PM – The resident came back in again and checked me and said I was complete and Huck was now at a +2 station. She then explained how to push and said we were going to try a few and see how it went. They had me reach down and hold behind my legs while Nolan held one leg up and my nurse held the other one, and they had me push for 10 seconds and do 3 pushes inside one contraction. So I would push really hard for 10 seconds, get a breath and do it again, 3 times. The maternal fetal medicine on call had made it in the room by this point and was coaching me through the pushing as well. In between one, she said “you’re pushing really good. If you keep pushing like that, he’ll be out in a couple more.” That was super encouraging to hear. I just kept thinking about all of the birth stories I’d read and listened to on podcasts about how to push and I kept trying to remember to apply those things. I think the next contraction and set of pushes, they all started saying “whoa whoa whoa, okay stop pushing!” I heard something about getting nicu in the room; nobody had made it yet besides the resident and mfm. Nolan said all of the sudden “was that his head???” And they said “Yes, that was definitely his head.” I asked if they were serious?? And they said “Yup! Do you want to see?” I said yes so they moved a mirror over and I could basically see the top of his head, which kind of went back in as the contraction ended. They took my internal monitor out and said “Okay momma, next one is on you. When you feel the contraction, push as hard as you can.” So I waited until I felt the pressure and then pushed with all of my life, took a deep breath and pushed as hard as I could again and out came his head! Nolan said on the third push they guided out his shoulders and the rest of his body. 

10:09 PM – They told me to look down and I saw our baby boy enter this world! He instantly cried, which was a great sign and Nolan got to cut the cord. I cried like crazy too, of course, just like I did when Whitlee was born. They took him over to do their initial checks and to decide if he needed prostaglandins at the bedside (he didn’t). They did his weight and measurement – weighed 6 lbs 11 oz and was 20″ long. Then they brought him over to let me hold him for a few minutes. We got a good look at him, then they let Nolan run to the waiting room to get Whitlee so she could meet him. She looked at him and said, “he’s pushed out??” We all got a good little giggle at that. Then Nolan took her back out to the waiting room and they took Huck back over to his warmer so they could start placing all of his lines. During all of this, I delivered the placenta and got a little stitch for a superficial tear. I felt so. much. relief. as soon as Huck and the placenta were out. They also turned my epidural off so I started feeling my legs again which was nice. I kept watching Huck’s team of people working on him and he was so quiet that I thought they’d sedated him but when one of the doctors commented that he was so calm, I realized he was just hanging out. They said he was just laying there watching them do their job. Random side note, right as I was delivering him, the NICU team kind of ran in the room. I didn’t really notice them come in but when I looked up, the room was full. They said something later about how they expected me to be pushing for a while and I asked how long I pushed and my nurse looked at her notes and said “about 10 minutes”. I was shocked!






11:15 PM – They transferred him across the sky bridge to the CVICU and Nolan went with him. Once they got him over there, they started all of his testing and trying to get a better idea of his heart. He was doing really well and breathing great on his own. We were told the next couple of days would be spent gathering data on his condition and we would most likely get an update on Monday from the cardiac team on plan of care. 

12:30 AM – I was in a postpartum room, up walking, using the restroom and overall feeling great. Exhausted, but great! 

So that’s his story! I can’t believe I did it and it was such good closure to the pregnant part of my life. I feel now that I had one emergency c section which was the best choice for that child and I had a successful vbac which was the best choice for that child. I have recovered from both major abdominal surgery and a vaginal delivery and we are so blessed to have two beautiful children. 

Huck’s Heart | April Update Part 2 

In honor of making it to 34 weeks, here’s part 2 of this crazy journey so far! 

Read Part 1 here 

I started calling on Monday of the following week, asking for the status of our referral. We were told it could take 5-10 days for approval but if we called in, they could possibly expedite the process. Again, trying to shorten the insanity of what we went through, I made phone call after phone call; one to the OB’s office, then another to our coordinator with Texas Children’s to relay information and ask questions, then another to the insurance company, rinse and repeat, until we finally got approval for all our visits the afternoon before our first appointments with Texas Children’s. Talk about cutting it close! 

On Friday, April 7, I was up at 3 am partially because I couldn’t sleep and partially because we had to leave super early to be in Houston for our 8 am appointment and we weren’t really sure about traffic. It was a whirlwind day, with 3 different appointments, each lasting approximately 2 hours. We were basically starting from scratch and letting them build the information from the last 8 months and Huck’s heart in their own systems and records. 

First we met with the MFM (maternal fetal medicine) ultrasound department. We had a full anatomy scan, which at 33 weeks is kind of strange because he’s so big at this point. They measured all of his body the best they could, let us know he was measuring 5 lbs 4 oz, in the 68th percentile I believe, and confirmed for like the 15th time that he is indeed a boy. 🙂 Oh and that his head and belly were measuring in the 90 something percentile. The words “fat tummy” were used lol. He’s a full pound bigger than Whitlee at this point. 

After that we met with the Maternal Fetal Medicine doctor that we will see until Huck is born and who we thought would be delivering him (I’ll get to that part). She went through my entire medical history, looked at my blood sugars, talked about preeclampsia and symptoms to keep an eye out for, plan for monitoring going forward, the delivery process, what to expect the next 6-7 weeks, gave me an updated tDap vaccine for this pregnancy, and did a cervical check. And then before we signed all of the consent forms for birth and treatment, she asked “do you want another c section, or would you like a vbac?” She was so casual about it, like asking if I wanted water or tea. I asked what she thought and she said that as long as I’m stable with my gestational diabetes and blood pressure, she has absolutely no problem letting me go into labor on my own, when Huck is ready, and letting me do a trial of labor after cesarean; that they do tons of them there. She said it would be easier and faster recovery for me, as well as beneficial for Huck to travel through the birth canal and help squeeze extra fluid from his lungs, especially in this case. She reminded me I’ll need the ability to go see him in the nicu and a c section recovery might hinder the speed in which I’m able to go there, plus having a 2 year old to handle. There were discussions about the risks involved and reasons why we might still end up having a c section but for now, we agreed to keep a close eye on things and proceed towards a vaginal birth. She may or may not be the actual one to deliver him though since it will be spontaneous. 

I’m so nervous and excited for that part, but seriously so at peace that I know she fully supports the idea and that if she moves toward a c section, its because I truly need another c section. She did confirm during my cervical check that I was not dilated yet (good thing since we’re not quite ready yet) but that he was low and she could feel his head, which at this point was excellent because this is what would begin to soften and efface the cervix when it was time. She would prefer I spontaneously go into labor on my own but was open to inducing if we should reach that point. 

The last appointment of the day was for the echo and to see the cardiologist. They did a full echo, lasting about 45 minutes. Nolan and I kept both drifting off during because she was super quiet. She said that while she did the scan, the cardiologist was watching from a different room. I noticed she went back over some of the same areas over and over, very very slowly. I remember wondering if the cardiologist was asking her for second and third looks at some things. Afterwards she left and the cardiologist came in. She said that Huck has a very complicated little heart, but that it is not hypoplastic left heart syndrome. She did a few scans of her own and then had us sit down for a consultation where she explained the complex anatomy of his heart and how we would proceed. 

She explained that he does actually have two ventricles – one on one side that is large and fully functional and another that is very small, sort of like a pocket ventricle. He also has both of the main arteries that are very important for function of the heart. Then she told us that the large ventricle, she believes is the left ventricle, making him have a ventricular inversion. (This explains why our first cardiologist was hesitant to commit to saying right or left.) This also means that the aorta is attached to the left ventricle and the pulmonary artery is attached to the right ventricle, which is called Transposition of the Great Arteries or TGA. He also has Tricuspid Artresia, meaning his tricuspid valve never developed, and he has a ventricular septal defect, a large hole between the two ventricles, making it look like one ventricle. I know this is super confusing and it still is to us too but this picture explains it pretty well. 

This diagram shows a “hypoplastic” right ventricle because the term hypoplastic means “underdeveloped” and he will still be considered (and treated like) a single ventricle baby. But in our case, if she is correct about the complex anatomy of his heart, he has the stronger of the two ventricles. The left is usually considered the “work horse” of the heart, having stronger muscle walls and capable of regulating blood pressure better than the right. 

So what does all of this mean? It means that he will for sure have open heart surgery at least twice in his life. But for now, pending anatomical confirmation at birth, he is clear of the Norwood procedure that happens almost immediately after birth. Reminder, the Norwood is the most complicated and severe of the surgeries and has the highest mortality rates. They said he will go to the NICU somewhat immediately following birth. I say somewhat because as long as he’s stable when he comes out, they will do his initial assessments in the room with us and that he would most likely be with us for around 30ish minutes before leaving for the NICU. Some of this has been a little strange to explain to people because the natural reaction is “we’ll won’t he be in critical condition when he’s born? I mean he’s missing part of his heart… and some of its backwards… and I just don’t understand.” And the best answer I can give that we’ve had to learn over time is that there are some unique features to a baby’s heart while they’re in utero, like some ducts and passage ways, that allow blood to freely move about the heart in a way that is actually “okay” for them at first. It’s not a perfectly functioning heart but it gets the job done. Those things remain open for quite a while giving care providers plenty of time to do whatever needs to be done. It’s all pretty miraculous. 

Where we’re at now is that my care has officially been transferred to Texas Children’s Hospital. I have appointments there once a week, but they’re usually 3-6 appointments crammed into one day since we live 2+ hours away. We won’t know much more about his heart now until he’s born and they’ll able to do a full echo on him to confirm the anatomy of his heart but if everything matches what they believe currently to be true, he may be able to wait a few months before his first surgery, making him much more stable and tolerant of the procedure. We will be temporarily relocating to Houston in a couple of weeks per the recommendation of our team of doctors at TCH and we’ll remain there until Huck decides to make his appearance. We’re not quite sure how long we will be there after he’s born but our prayer is that everything the doctors believe right now holds true and we know they’ll get us home as soon as it’s medically safe for him to do so. We definitely believe he’s in the best place possible now! 

Again, thank you so much to everyone for continued thoughts, prayers, and donations. There have been so many local fundraisers and it makes me cry every time I think about how everyone has helped. We can’t even begin to put into words how thankful we are for everyone’s continued generosity! 

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…