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. ❤️

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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. ❤️

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rt #ToughLikeHuck #1in100

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! ❤️

Whitlee | Three Years Old

Our first little love turned three years old on November 25. I can’t believe she’s already three!

We skipped the big birthday party this year and took her to Pleasure Pier in Galveston the weekend before while the weather was still pretty warm and then surprised her with “sparkle” (sprinkle) donuts and presents on her actual birthday! And after many late nights, approximately 3,784 popsicle sticks and probably the same amount of hot glue sticks, I was finally able to surprise her with her very own custom Barbie House! I’m so glad she loves it!

Third Birthday Interview

(These are her real answers, just as she said them to me! Some of them are so funny!)

How old are you?

Four

When is your birthday?

Twenty fifth one

What is your favorite color?

Purple!

What’s your favorite food?

Um, chicken nuggets

What is your favorite song?

Dirt on my boooooots

Who is your best friend?

Tyner is!

What’s your favorite animal?

Um, a panda!

What are you scared of?

Bad guys

What is your favorite thing to watch?

Max (secret life of pets)

What makes you sad?

When daddy leaves to go to work

What makes you happy?

Yaya does. I like Yaya.

What is your favorite thing to do?

Wash dishes. And laundry.

Where is your favorite place to go?

Target

What do you want to be when you grow up?

Um, a mommy!

What does love really mean?

You want to play with them!

Happy THIRD birthday to our baby girl! I have never known a love like the love I have for you. You are the sweetest big sister and you make your daddy and I so proud all the time at how smart you are! (Almost too smart sometimes!) You have got to be one of the funniest kids ever, and you’re constantly giving me a run for my money. Sugar and spice fits you perfectly! Hope you have the best birthday – we love you more than the world!

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 | 4 Months


Late posting, as usual! But in our defense, with Huck’s last surgery and recovery, things have been a little hectic!

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

He is wearing size 2 diapers and currently not wearing clothes since he just had his Glenn surgery. Was wearing 3-6 months right before though! He has almost completely outgrown 3 month onesies.

Eating: Huck was eating anywhere from 120-150 mls per bottle, every 3-4 hours up until the point he went for pre Glenn cath lab at around 3 1/2 months. After that, he developed necrotizing entercolitis (NEC) and was put on bowel rest and antibiotics for 14 days. They ran IV nutrition during that time. He was released to restart feeds the Sunday after his Glenn and we started with 15 mls and are up to 30, but so far he is not tolerating his feeds very well. He has taken 7 bottles in the last 24 hours and puked up the entire volume of 3 of them. Eating is the main thing he has to figure out again post op in order to be able to go home.

Sleep: Again, pre Glenn, he had a pretty decent routine, but it kind of all went out the window post op. He is starting to sleep more at night and nap less during the day, though. He still sleeps a lot in the mamaroo which helps his reflux, but will also sleep pretty decent in his bed at a pretty steep incline. I’m still brainstorming ideas for sleep when we go home.. pretty sure we will be getting a mamaroo, but trying to think of other options too. We had an arms reach co sleeper that I’m trying to figure out if there’s a safe way to elevate the head of it. If you have any ideas, let me know! He will be sleeping in our room for quite a while because I’ll be a nervous wreck for … oh, the next 18 years.

Milestones: He rolled belly to back a few more times before he went back on chest precautions post op, and when he’s on his back, he rocks really hard to one side. Wants so badly to flip to his tummy! Has really great head control and can sit unassisted for up to 20-30 seconds!

He also went through his first hurricane. We are still in Houston, so we were here throughout Hurricane Harvey and it was pretty intense here for a little bit.

Medical Milestones: He had his Glenn on September 7! This was his second open heart surgery. Post op recovery is going well! He was extubated the day after surgery and has been on room air since then. We have been working on getting back up to full feeds so that he can get off tpn and lipids and hopefully go home! His reflux is back with a vengeance so we’re trying to work around that. He is still on lovenox shots, clonidine, a diuretic, reflux meds, diazepam, and methadone for opiod withdrawals, but we are actively weaning methadone. They turned milrinone off a few days post op. So far, labs look good and indicate a successful Glenn!

Currently satting in the high 70’s to mid 80’s, heartrate is 120-150, blood pressure is usually 90s/40s.

Likes:

  • Being held / rocked / snuggled
  • Mamaroo
  • Watching videos of sister
  • Watching movies, really likes Sing
  • Being tickled
  • Listening to Elvis
  • When you blow kisses at him
  • The lights that reflect off his monitors
  • Warm bottles
  • Chewing on toys
  • Field trips out of the hospital room

Dislikes:

  • Diaper changes
  • Picc line dressing changes
  • Baths
  • Lovenox shots
  • Getting his blood pressure taken
  • Getting his temperature taken
  • Being listened to with the stethoscope
  • Pretty much anything hospital related anymore, haha
  • Pacifier
  • Being restrained in any way

Whew, another month down. 123 days in the hospital and 128 days in Houston.. we are so ready to go home. We basically missed the whole summer being down here with Huck and we’re ready to get out of here, get back to the country, and enjoy the fall. Even though our stay has been long, I couldn’t imagine how things would be if we were anywhere else but TCH. We’ve now seen what happens with babies that start out where we were supposed to start out (that’s a story for another day), so that alone makes us thankful to be here, but we are also so thankful for how so many people have taken what seems to be a special interest in our boy and our whole family. I’ll actually miss a LOT of people when we finally go home!

Huck Inlow, you are so loved! I hope one day I can explain to you how much not only your daddy, sister, and I love you, but how much our entire community and family and friends and nurses and doctors and PCA’s and therapists and complete strangers love you. You have so many people supporting you and we have been shown so much kindness from all of those people. I hope you always know that kindness. And I hope you know how many people have rooted for you, prayed for you, and fought for you. You have love from and support from all over!

Happy 4 months baby boy! We can’t wait to show you the world!