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! 

Advertisements

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!