The Day Everything Changed

Today marks one year ago that we got confirmation of Huck’s heart with the fetal cardiologist. But the day everything changed was January 20. That day, we made that hopeful drive to Galveston, praying there was some mistake. That maybe our normal OB’s ultrasound machine wasn’t clear enough. Or maybe Huck was just laying weird and they couldn’t get a good shot of a whole heart. I remember thinking, “This isn’t really happening. This doesn’t happen to people like us. This is all just a mistake. A fluke.” While we sat on the ferry, we didn’t get out and sightsee like most people do. Instead, we sat in the car and googled heart defects. We knew what worst case scenarios were and we read words like “mortality rates” and “survival rates”. We vaguely knew what hypoplastic left heart syndrome was and we knew that a single ventricle defect still has mortality rates. I had a copy of the insurance paperwork from my OB’s office but I couldn’t make myself look at it because I was scared of what it might say. I didn’t know it until much later but the diagnosis codes were listed there, one of which was “apparent life threatening event”. We went to that appointment hoping for the best but prepared for the worst.

They called us back and we had the most in depth ultrasound ever. The tech took the time to show Nolan the things he’d never really gotten to see before, chatting with us the whole time. We saw his hands and fingers, feet and toes, his face and lips, all of his bones. And when she switched over to his heart for the echo, she went dead silent. We squeezed each other’s hands and we knew something was wrong.

They told us before that appointment that we would have the scan and then the maternal fetal medicine doctor would talk to us – good or bad, we would have answers before we left. The tech got up and left the room and we talked about how strong his heart looked. That there was one part that was just ticking away, so strong. We found out later that was his one good valve, which was strong. The doctor came in, sat down right in front of us so that he was at eye level, and said “we think your baby has hypoplastic left heart syndrome”. I swear it was like something in a movie. It felt like everything got really fuzzy around the edges and I was hearing him but I was simultaneously scrolling through my brain of everything I’d read about HLHS and how everything in our life just shifted. In one sentence, our world changed.

We were told that we would be referred to a fetal cardiologist, who confirmed HLHS one year ago today, but like most of you know, we later found out with our rockstar fetal cardiologist at Texas Children’s that Huck has his own rare combination of defects making up his single ventricle physiology. He’s not a straightforward HLHS baby; he has most of the same characteristics, but with a few additional defects complications. (As a reminder, Huck had ventricular inversion with a hypoplastic left-sided right ventricle, tricuspid atresia, a hypoplastic aortic arch, congenitally corrected transposition of the great arteries, a vsd, an asd, and a very large pda. On paper it was listed as 7 different defects.)

We left there in rough shape. I don’t think we’d ever been so sad before in our life. I remember we tried to eat lunch but neither of us had much of an appetite. We were driving down the seawall in Galveston and I think we both saw him at the same time. I heard Nolan say “oh no” but it was too late. I’d already seen him. There was a dad waiting to cross the street, with a happy little baby boy in his arms. Something relatively small, but we both completely lost it. Nolan was on the phone with his dad and he just handed me the phone and I managed to choke out that we’d call them back. We had no idea how we were going to make it through this. But here we are, one year later and we’ve survived so far. And we’re home and happy and Huck is doing great, all things considered.

Yesterday he had a cardiology appointment and an echo to recheck the potential arch narrowing and his heart function. I’m so relieved that we found out that his echo showed almost zero gradient in his arch, which means no narrowing and no cath lab! His ventricle function is still the same – mildly depressed – and that may either stay the same or may still return at some point. His cardiologist was able to check out his consistent retracting that we’ve been noticing for a while, even when he’s very clearly not in distress, and she determined it’s not from respiratory distress, but mechanical from the way his sternum and ribcage healed from his two surgeries. We’re weaning his enalapril, discusses plans for the future, talked a little about his Fontan, and got released to visits every 6 months. Oh, and his saturations were holding steady at 89! I’ve been so anxious for this appointment, especially with it basically being the one year mark from THE day, but I left there feeling like a huge weight has been lifted off my shoulders.

This time last year was so hard on us. But this year, things are looking pretty bright. ❤️

<<<<<<<<<
rt #ToughLikeHuck #1in100

Advertisements

Huck | 7 & 8 Months

Stats:

Birth – 3035 grams | 6 lbs 11 oz

1 Month – 3950 grams | 8 lbs 11 oz

2 Months – 4420 grams | 9 lbs 11 oz

3 Months – 5620 grams | 12 lbs 6 oz

4 Months – 5889 grams | 12 lbs 15 oz

5 Months – 6840 grams | 15 lbs 1 oz

6 Months – 7530 grams | 16 lbs 10 oz

7 Months – no official weight check, but somewhere in the neighborhood of 17 lbs

8 Months – 18 lbs even 🙌🏼

Finishing out our last box of size 3 diapers, and moved into size 4’s. He kept blowing out of the 3’s. 🙈 Fitting comfortably in 12 month clothes and got some 18 month outfits for Christmas!

Eating: We had been using the European Holle formula for a while and I swear there was something in it that was magic because Huck was the happiest baby on it. Then some time around 7 months, he had something weird happen. He ran a low grade fever and had a runny nose, seemed to be cutting more teeth, and then started pooping like c r a z y. Up to 13 times in one 24 hour period. Several times a night. Blowouts galore. And it wasn’t watery, just loose and super frequent. This went on for 3 days. Then I started seeing specs of blood late on a Saturday on day 4. I was immediately worried about NEC (he’s had it twice, before his Glenn), but I knew the likelihood was extremely low, plus he didn’t have any other symptoms. Wasn’t very fussy, wasn’t refusing feeds, belly was soft and normal roundness. I didn’t have the gut feeling to run to the hospital so we waited it out until Monday, day 6. I was thinking maybe so much poop had irritated him and caused a fissure. But by Monday morning it was still there, a spec or two in every diaper, so off we went to the pediatrician. Thankfully, almost immediately after seeing one of his diapers, she diagnosed him with a milk protein allergy and switched him to Nutramigen. I think it was two days in that his poop cleared up from blood, and the frequency started to decreased about that same time and now we’re back to normal! He eats quite a bit more of the Nutramigen too, sometimes taking up to 6 ounces at one time. This is big for him!

Sleep: I think really the only thing that has changed in this department is that he’s maybe the tiniest bit more predictable. He still wakes up several times a night to eat but I noticed recently he doesn’t eat very much before he rolls over and goes back to sleep, so I think it’s more habit than anything. He normally goes down around 6:30/7, wakes up every 3-4 hours and is up anywhere between 5 and 7. He usually takes a small cat nap in the morning not too long after he wakes up, which from everything I’ve read, is a sign he’s not getting enough sleep at night, but we haven’t been able to get that figured out just yet. Then he normally takes two solid 1.5/2 hour naps, one in the morning and one in the afternoon. Sometimes it’s two shorter naps for morning. He still sleeps in the co-sleeper next to our bed and I really think we’d be okay moving him to his crib, but if you’ve been around here a while, you know our house is old and awkwardly laid out, so you actually go through his room to get to Whitlee’s room, with just a doorway separating them. So I’m worried he’d either wake her up or vice versa, so we haven’t taken the plunge yet.

Also, he started flipping over to his tummy to sleep and prefers to sleep either on his right side or on his tummy with his butt in the air. So cute!

Milestones: Sitting up really solid

  • Can go from sitting to laying down on his tummy without crashing (usually)
  • Scoots around on his butt if the floor is slick
  • Standing if he has something to hold on to and acting like he wants to pull up on things he can get next to
  • Got his 3rd and 4th teeth – upper lateral incisors before his upper middles, so he looked like a vampire for a minute
  • 5th and 6th teeth also coming in – upper middle teeth
  • Had his first Christmas
  • Started real solids, prefers them over traditional baby food
  • Finally started babbling and of course, “da-da” came first – just like his sister
  • Got his first big boy haircut
  • Army crawling has started
  • Blows kisses intentionally (without the hand motion)

Whitlee never did the traditional crawl, up on her knees. I think it’s because our floors are so hard. Shoot, I don’t even want to crawl around on them. But she went straight from army crawling everywhere (fast!) around 7 1/2 months, to pulling up around 8 1/2 months and cruising the furniture and then took off walking around for good around 9 1/2 months. I’d say little brother is hot on her heels! This makes us so proud because we were told he would most likely have developmental delays and even possibly some severe delays but he seems to be pretty much on par with definitely what could be considered “normal”.

Medical Milestones: Nothing too major this month except diagnosing a milk protein allergy and switching formulas to alleviate that issue. We go back to the cardiologist in a couple of weeks for a check up and another echo. I’m hoping he’s calm enough to get a good look at his arch and they can make a decision on whether it is narrowing or not. We’re also praying his decreased function shows to be fully restored which we’ve been told can happen after the Glenn. His cardiologist will probably make a move on weaning his enalapril or tell us how much longer she wants him on it. We’ve been told he’ll be on daily aspirin forever (he’s on half now), but that the enalapril probably won’t be long term.

He also got a referral to physical therapy because he has some mild torticollis. I’m not sure when we’ll start PT for that, but it shouldn’t be too long and I’m hoping it’s not too bad. It’s not severe torticollis so maybe just some stretching or a tot collar for a bit. Our occupational therapist from the hospital said torticollis is super common in their cardiac patients. I guess maybe from being in a hospital bed for so long, but Huck has always preferred everything to one side. I don’t know if the torticollis came first and pushed the preference or if the preference is what caused the torticollis. Regardless, it can be corrected and should be while he’s still young.

Likes: Eating big people food

Whitlee

Maggie (our dog) – oh my gosh, he’s obsessed!

Riding in the car

Baths

Trucks

Anything that lights up or makes noise

Chewing on anything but loves Sophie the giraffe and his squeaky donkey

Snuggling with a blanket

Being held IF you’re standing up

Dislikes: Being cold

Being held if you’re sitting down

Being fed, wants to do it himself

Having a dirty diaper, he wants to be changed almost immediately

Getting his face wiped

His head being rubbed

It blows my mind that we are rolling up on a year old so soon! Things have started to settle down just a little bit but we hopefully have something good happening this year and things will more than likely become hectic again. But I was reflecting recently on where we are now. Life with Huck started out so different than your typical newborn stage and there was a lot of focus on “what needed to be done” and survival mode. I had heard that it takes a little while, but soon you settle into normal baby life, and the heart part becomes a little more distant. It’s always there, kind of like background noise, but it’s a little less front and center. I think we’re finally starting to get there, given everything goes well at the cardiologist next week. I remember looking back in the car the other day, seeing him in his car seat mirror and thinking how much I love him. It sounds weird, but for once I didn’t think about how thankful I was that he’s alive (of course, I’m insanely thankful), or wonder if he was breathing okay, or wonder what his heart rate or saturations were. I just looked back and thought, “goodness, he sure is cute. Oh, I just love him to pieces.” It was a nice normal moment.

Happy eight months, little boy. We are so lucky to be your parents and can’t wait for so many more normal memories with you!

New Year, New Plans

The later part of the year is always the busiest time for us. This year was extra chaotic with the addition of Huck’s appointments and just life in general with two kids, so I’ve fallen off blogging for a bit. I really think I just needed a little time to regroup.

I’ve always been a working mom. I took a 16 week maternity leave with Whitlee, but I did go back. Working has always given me two things – one) a place to channel creativity and use my “other” brain, and two) intention to focus on quality time with my kids and not just quantity. I lost my job in June 2016 with the downswing of the oil industry, and stayed home for a bit, but then I finally finished my cosmetology hours and went back to work doing hair. When we found out about Huck’s heart and the priority of getting him full term became a major point, we decided it was best for me to stay home and focus on my health and spending time with Whitlee before Huck arrived.

Now that we’ve settled back in at home, I’ve been racking my brain trying to come up with a place to channel energy and/or a way to make a little bit of income. My sweet husband has assured me over and over that my only job is to take care of our kiddos, but it’s not in my nature to sit back. I won’t dare say sit back and relax, because as a prior working mom, I’m here to tell you – stay at home mom’ing is the most challenging, yet most rewarding job of all.

But in order to not completely lose my mind, I have to have a “task”. So I’ve dreamed up all kinds of ideas. I tried to start learning hand lettering. Ha! I tried royal icing cookies and while I really think I nailed my sugar cookie recipe, people that make these beautiful, detailed royal icing cookies have a very unique talent. I considered selling Rodan + Fields or LipSense, firing up my silhouette for a small business of shirts and other custom items, or doing hair at my house. But none of those ideas really played out.

So here I am.. maybe getting back into the swing of blogging again will scratch that itch. Huck’s 7 & 8 month posts are coming soon, as soon as we roll over 8 months in a few days. I’m hoping to try and get some direction with my blog and maybe some regular posts.

Let me know if you’re still around! ❤️