Huck | 9 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 – approx. 17 lbs
  • 8 Months – 18 lbs even
  • 9 Months – 18 lbs 10 oz

Wearing size 4 diapers comfortably and all 9-12 month clothes. I feel like he’s growing like a weed, and is SO strong. Daddy says it looks like he has muscles.

Eating: Huck has been doing really well on the nutramigen. I’m always surprised at how decently he eats, because nutramigen smells like dog food, but he likes it, so whatever works! He’s also eating anything we give him – baby food or big people food. Seems to prefer big people food over baby food but the other day, put down two of the baby food pouches back to back. And then another later in the day. Plus all normal bottles. 😳 He’s still taking several bottles throughout the night, but I’m hoping to wean those soon.

Food Likes:

  • Puffs
  • Cheerios
  • Eggs
  • Bananas
  • Beans
  • Peanut Butter is his fave

No major food dislikes yet. He makes funny faces for most fruits but still eats them

Sleep: The biggest change for sleep is that we just moved him to his crib. He’s still waking up 2-3 times a night to eat but I usually sleep a little bit more solid between wake ups since I don’t hear every little sound he makes anymore. I’m hoping he starts sleeping through the night one day.. this momma is so tired.

Milestones:

  • Can sit himself back up from crawling
  • Crawling on all fours occasionally
  • Army crawling super fast
  • Pulling up on anything and everything
  • Cruising the furniture
  • Can stand unassisted if you trick him into thinking he’s holding out to something
  • Just started walking behind the walker toy
  • Cut tooth number seven

Medical Milestones:

We went back in January to the cardiologist for a check up and another echo. He was super calm and they were able to enough to get a good look at his arch and they determined that it wasn’t narrowing and everything looked great! We got released to visits every six months and we weaned one more med. Which left us on one daily med, that he’ll be on long term.

We had our physical therapy evaluation for his torticollis and they confirmed he has it, but it’s very mild. We got some exercises for home and they recommended we see PT once a week for a few months. We haven’t started yet but I’m hoping it’s a fast recovery and a few months is a stretch.

Likes:

  • Eating big people food
  • Whitlee
  • Maggie (our dog)
  • Any dog, really
  • Being outside, always
  • Riding in the car
  • Pulling hair
  • Baths
  • Trucks
  • Anything that lights up or makes noise
  • Snuggling with a blanket
  • Being held
  • Standing up
  • Screaming at the top of his lungs

Dislikes:

  • Being cold
  • 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

I can’t believe it’s already been 9 months and that we’re rolling up on a year old so quickly. I’ve started planning his first birthday and we’re looking forward to moving out of the baby stage. We’re betting he’s walking pretty soon, which is a tad on the early side, but sister walked around 9 months, too.

Happy 9 months, little guy! We love you so much and you are the perfect completion to our family. ❤️

Advertisements

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

Huck | 5 Months & 6 Months

Well it finally happened. The inevitable second kid problem where you don’t have nearly the time you had with the first kid and you almost miss TWO months of posts. But I’m finally getting 5 and 6 months posted just in time for 7 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 – 32nd percentile! 🙌🏼

Well since I last posted at four months, we went from size 2 diapers up to size 3 diapers and he pretty much blew right through 6 month clothes within a few weeks and we’ve moved on to at least 6-9 and a lot of 9 month clothes. Baby boy is growing!

Eating: Whew, so much has changed since my last post. We were still inpatient at that time and eating was Huck’s biggest obstacle to be discharged home. He was really struggling with acid reflux and vomiting large volumes of milk. He was still on breastmilk but my supply completely crashed a couple of months ago so he was on the back stash I had pumped for him. We finally ended up doing an upper GI study to check for a few things and another heart mom pointed out in a blog post, it sounds odd, but we prayed for a bad outcome. Because a “bad” outcome means there’s an answer and a reason for his struggles with eating. And a reason typically comes with a solution. In our case, Huck’s GI study showed that his stomach wasn’t emptying properly and he was actively refluxing at random times. This meant that his poor motility was causing him to reflux more and was most likely causing his disinterest in eating. We started him on a motility agent and slowly but surely, he started eating more, keeping it down, was able to come off tpn and lipids, and eventually ate enough to earn his ticket out of the hospital!

Since we have been home, we transitioned from the last of my breastmilk to Enfamil Gentlease. We had a good experience with EG with Whitlee, so it was familiar territory to us. Huck did okay, but he still seemed so uncomfortable while eating and I know him well enough to know he was still silently refluxing. He had stopped spitting up but he still had all of the signs. Another heart mom had told me that they had tried a European formula and her daughter loved it. I did some research on the difference in European formulas and American formulas, how to actually get it, and decided to give it a try. In the first week, Huck’s entire disposition changed. He was much happier, seemed so much more comfortable, stopped looking so reflux-y and his bowel movements even changed back to looking like breastfed baby poop. We have been on this formula for a while now and loving it! I’ll probably make a separate post about the details but if you’re curious about anything, feel free to ask! We chose to go with Holle Stage 1 and tried the Stage 2 but he seemed to prefer the Stage 1, so we went back.

We also started baby food between five and six months and he loves the vegetables and does not care for the fruits at all. He really likes to eat but I’m a little worried about the constipation that seems to be coming with it. I’ve been reading up on probiotics and we may start that if we get the all clear from our doctor and cardiologist.

Sleep: We finally seem to be making some progress in this department. At our first visit with his cardiologist, who is very well versed in single ventricle babies, she asked about his disposition and certain behaviors. We told her about how fussy he is and that you really can’t leave him to play for even a couple of minutes without him losing his mind. She reminded us that in the interstage for single ventricles, they absolutely cannot let them cry (their BT shunt is so dependent on different variables and crying can cause restriction to his lungs), so any time he ever made a sound, someone was always there to comfort him – rock, pat, shush, bounce, etc. So when you are post Glenn and stable, there’s a whole new world for these babies where they can actually cry without it being life threatening. She said that it’s one of the most common concerns she hears from single ventricle heart parents, that their babies cry so much and it’s exhausting having to constantly console them. So she not only gave us permission, but encouraged us to start letting him cry it out a little. Self soothing and entertaining themselves with toys is a learned behavior from a very young age, and he never had that opportunity, so here we are at 5/6 months with a baby that has no idea what to do with himself. We attempted the same mild version of cry it out that we did with Whitlee and he at least will put himself to sleep now. He still wakes up one million four-six times a night to eat, but it is what it is. Whitlee didn’t sleep through the night until 18 months, so I guess that’s evidence that we’ll get there eventually.

Milestones: Rolling like crazy

  • Standing with support
  • Sitting unassisted longer stretches
  • Self weaned his swaddle (thank God for that. Weaning it with Whitlee was a nightmare.)
  • First baby food
  • First trip to Galveston and rode on the ferry
  • First Halloween – he and Whitlee were both puppies, per her request!

Medical Milestones:Finally discharged from the hospital just before 5 months!

  • Had our first outpatient cardiologist visit and echo – ventricle function has remained the same (mildly depressed), but his arch may be narrowing again. We go back in January to check again.
  • Weaned several medications
  • Got his first round of vaccinations
  • Got his flu shot at 6 Months
  • Got approved and received his first synagis shot (rsv prevention)
  • Had his first hospital readmission for a random virus that had him running fever and a high white blood cell count, the day of 5 months. Thankful to report it ended up just running its course and being done. Sats and blood pressure all held steady throughout.

Likes: Being held

  • Eating
  • Whitlee
  • Maggie (our dog)
  • Riding in the car
  • Baths
  • Vegetable baby food
  • Big people food – constantly trying to eat my food
  • Chewing on anything!
  • Snuggling with a blanket

Dislikes:Diaper changes

  • Lovenox shots
  • Being strapped into his car seat, totally fine once he’s in and the car is moving
  • Fruit baby food

Whew! Life has been so hectic. Actually, I think hectic is the understatement of the year. But even on our craziest days, we are so incredibly grateful for the gift of our two babies.

Happy 1/2 Birthday, Huck Inlow! We are so proud and so blessed with every day we get with you. Forever thankful for life at home together as a family. ❤️

Five & Six Month Photos

Huck’s Heart | Questions


We’ve had a lot of questions and I thought this might be a good place to answer some of them. A lot of these are generalized for now but will be more detailed plans once we see Huck’s doctors again in March. Right now they just want me to stay. pregnant.

What will happen when he’s born?

As soon as he’s born, they’ll make sure he’s stable and get him to the NICU. He’ll have some things to help him remain stable until his first surgery, like prostaglandin for his lungs, and they’ll do testing and heart echos to get a 100% sure clear idea of how his surgery needs to go. He’ll have his first open heart surgery (the Norwood) within the first week. Second surgery will be at 3-6 months and third surgery will be at 2-3 years old. His most critical time will be the time between first and second surgeries.

When will he get to go home?

They said he’ll get to go home after a few weeks barring any additional complications but our house will be like a mini hospital and we won’t be going many places, if any. We will have to be diligent in limiting visitors and making sure they’re not sick. If he’s around anyone remotely sick or anyone that smokes, it could literally kill him.

How common is HLHS?

HLHS is pretty rare, and according to the CDC, less than 1% of babies born in the US have it which is about 960 babies each year. Congenital heart defects as a group affects 1 in 100 babies. #1in100

What causes it?

They’ve told us that it’s mostly hereditary, but since we don’t have a family history on either side of any type of congenital heart defect they think in our case it was sporadic. Sometimes if the mom doesn’t know she’s pregnant for an extended amount of time, certain medications or lifestyles (drugs, alcohol, smoking) can cause it but we knew we were trying and we knew I was pregnant prior to a missed period, so I was extra careful even before we found out. Not that I do drugs or smoke but I have an occasional beer that I refrained from, starting when we started talking about baby #2.

Where will I deliver? 

We live in a small town about 45 minutes from our current OB. We live about 2 and a half hours from where his surgeries will happen in Houston, Texas. I will deliver at the same hospital his surgeries will happen at. We actually have to pick a new OB but that decision will happen after our next appointment with the pediatric cardiologist when we discuss detailed surgery plans and it will also depend a bit on our insurance. Some of you know I lost my job in June of this past year and with that, I lost our insurance coverage. We had to get coverage privately and it has limited the places that accept us, plus being high risk. I’m currently remaining under the care of my original OB and they’re aware of the situation and going to continue monitoring heavily for preeclampsia and checking growth patterns on Huck. They’ve actually increased my visits a little bit and have said they’ll see me every day if need be.

Will he be able to live a normal life?

For the most part, yes. It’s all based individually on each child with HLHS but we have every faith in the world that our boy will get the best care possible and once these doctors perform these miracles on him, he’ll be no different than any other little boy. He probably won’t play sports or run marathons, but let’s be honest… Nolan and I aren’t really sporty people and if you see me running, you better run too because something is chasing me. I’m sure he’ll have plenty of hobbies otherwise. Nolan already talks about hunting and fishing with him. 😍

If you have any other questions, please feel free to ask. I’m glad to answer them if you’re curious. I won’t find anything offensive and to me, it helps to raise awareness about HLHS and congenital heart defects. A lot of HLHS cases are individually based on the specific child so every story you read on the internet is different. Also, February 7-14 is congenital heart defect awareness week.

I also wanted to say a sincere and huge thank you to all of the support we’ve been receiving lately. My mom started a Go Fund Me and I have cried more than once seeing the donations from people we know. My mother in law has cooked dinner for us so many times in the last few weeks and it has been great to have one less thing to think about. My  sister in law and brother in law donated the proceeds from a garage sale we had last weekend to help with expenses and my dad and stepmom are planning a benefit event and raffle in April. And just the rest of our family, friends, and community have been amazing at showing their support and offering help and prayers. I’ve had so many people text just to say we were on their minds and I think we’re on every church prayer list in southeast Texas. The amount of gratitude we have is unexplainable. So thank you from the bottom of our hearts. 

Baby Hillin #2 | 12 Weeks

  
How Far Along: 12 Weeks

Baby is the size of a(n): plum

Gender Predictions: Ha! Sometimes I think okay, there’s for sure a boy in there and other times I’m like, nope, gotta be another girl. I think I’m a little more focused on healthy and full term this time. Boy, girl, just give me 40 weeks! But! Our gender ultrasound is scheduled for 2 1/2 weeks from now and our gender reveal party is in 3 weeks.  

Weight Gain: 5 lbs.. doing a little better this time. I’ve discovered that basically with both pregnancies my belly bloats super big and super fast, so as soon as I find out I’m pregnant, there’s a “bump”. But then as bloat slowly turns to real bump my belly looks about the same for a little while. So it’s like whoa, there’s a belly, then it slowly chills out into the normal growth rate. Funny that my weight is a little different this time though. 

Maternity Clothes: Definitely wearing some, but a lot of the styles now are loose and flowy so I’m still wearing a lot of non maternity shirts. Another note of difference this time, at this point with Whitlee I could barely squeeze into my jeans anymore and the hair tie trick was the only thing barely holding me in. This time, I can still wear quite a few pair. They’re tight, but still button all the way. 

Belly Button In or Out: In, but I have felt the shallowness coming.

Wedding Rings On or Off: On

Sleep: Still so tired and still sleeping kind of crappy. We’ve all had colds the last week so I’ve had trouble breathing and Whitlee wakes up coughing once a night. I think we’re finally on the mend this week, though. 

Best Moment The Last Few Weeks: getting to hear baby’s heartbeat again at my 11 week appointment. Heart rate was 141!

Miss Anything: Nothing really, just trying to enjoy everything right now. It’s been so nice not being super nauseous this time. 

Movement: Sooo, I’ve read that you can feel a second baby much sooner sometimes and I felt the tiniest questionable flutter with Whitlee at 11 weeks so I knew it could be any time now. I really started feeling her flutters significantly about 12/13 weeks and then of course the big kicks much later. But over the the last week (11/12 weeks) I started feeling the familiar flutters in almost the exact same location as Whitlee. Just tiny little flutters for now but I guess I recognized them this time. So sweet! 

Cravings/Aversions: Craving sushi, broth like soups, potatoes, and the Chobani Flips in PB&J flavor. Not really any strong aversions right now, but some stuff just doesn’t taste right to me like cream cheese, cheesecake, and tacos. Also, if I see anything with a weird texture, I literally dry heave… soggy cereal is the. absolute. worst. 

Symptoms: Still the lightest mild nausea in the evenings, nothing like with Whitlee though. Lower backache, occasional increased heart pvcs, and holy mess I am s t a r v i n g all the time right now. 

Additional Notes: My blood pressure did start creeping up a couple of weeks ago into the borderline questionable range. My doctor and his NP both agree that it had to be something preexisting because preeclampsia is not likely to show this early. They started me on a low dose blood pressure medicine and it’s been perfect since then. I immediately asked if they thought this meant I would get preeclampsia again and they said “not necessarily”. They think they are two different things. I’ll still be praying that the pre-e stays at bay this time, though. 

Also, next post is coming before the gender reveal so I’ll be listing old wives tales and where we’re at this time and do another vote! For the record at the moment, Nolan thinks (hopes!) it’s a boy, I think it’s another girl, and Whitlee has changed her mind to a sister. Mom and Nanny think it’s a boy this time; they both predicted a girl last time. 

And! I’m not sure I’ve officially mentioned it but our family is growing exponentially! Nolan and his sister and their two cousins are very close, more like four siblings, so it’s basically like I have 3 sister in laws (but really just one sister in law and two cousin in laws). Well we found out shortly after we found out we were pregnant that one cousin’s wife is pregnant and due 3 days after me and last weekend the other cousin’s wife announced she is expecting too! Three Hillin babies due within two months! So exciting!

  

Baby Hillin #2 | Ultrasounds

We had a second ultrasound a little over a week ago to see the newest babe and everything seems to be growing just as it should! Measuring right on track and could very clearly see and hear the heartbeat this time. It’s so crazy to see how small it is at an almost 6 week ultrasound vs just over 8 weeks ultrasound. 

First Ultrasound | 5w6d

Second Ultrasound | 8w2d

Baby’s heartbeat at the first ultrasound was 120 and at the second was 163 I believe. Whitlee’s heartbeat at 8ish weeks was 182. We can’t wait to find out if there’s a baby brother or baby sister in there!

Life Lately

Since I haven’t posted lately, I figured I’d just do a mishmash post about what we’ve been up to. We’ve been 90 to nothing as usual but more so since we’ve been soaking up this summer. We’ve been to the family lake house more times than I can count at this point, literally weekends in a row. Whitlee loves the boat and swimming. Every time we stop she says “Out! Swim!” 

    

We’ve also been to the zoo and two different waterparks.  

  
 
Nolan and I went on an adults only weekend trip to Austin with his sister and her husband. I missed Whitlee way too much! 
  

 
We also moved a play set from my in laws to our house and we play on it every single day. We’ve also swam in the little pool any day that we haven’t had anything to do and that the weather has cooperated. 

     
 
I’m still not back to work yet but I do have something in the works.. just not quite ready to share yet. Whitlee is growing like a weed, and talking even more than my last update, putting more and more words together. We basically have conversations now. She actually just got in my face and said “Paw Patrol?” And I said “you want me to put it back on paw patrol?” Then she said “yes ma’am.” She’s getting really good at manners lately saying a lot of no ma’am, yes ma’am, please and thank you unprompted. She also apparently has an opinion about things now. She demands to pick her own bow and is concerned about if it matches. She’s actually really good at picking one that matches pretty well. Oh and a few mornings ago, I held up an outfit and asked if she wanted to wear it and she said “No! Pink!” and was upset until I found her a pink outfit. I’m sure her teenage years will give me a run for my money. She’s currently cutting her canine teeth, three at one time, yay. I’ve started planning her s e c o n d birthday. I can’t even believe we have an almost 2 year old and we’re talking about 2 year old things like big girl beds and potty training and some pretty intense tantrums. She’s getting so big so fast. We have one more vacation this year which is our real vacation to Orange Beach, Alabama. This will be Whitlee’s first real vaca. I’m so looking forward to it! Other than all of that, it’s been our regular fast paced life.. we just try to keep up!