Huck | 10 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
  • 9 Months – 18 lbs 10 oz
  • 10 Months – 19 lbs 6 oz

Still wearing size 4 diapers and 9-12 month clothes for the most part. Occasionally a bigger size creeps in there, depending on the brand. Seems like he’s outgrowing things length wise sometimes and then sometimes it’s his big tummy. So different having a bigger baby this go round!

Eating: No major changes here, still doing Nutramigen formula and baby food/solids. He usually eats quite a bit throughout the day and will sit in his high chair 2-3 times a day for real food. We basically have to either hold him or put him in his high chair if anyone else is eating because he will help himself to your plate. He’s not picky at all!

Food Likes:

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

I haven’t found anything he seems to dislike yet.

Sleep: He’s still sleeping in his crib, in his room. We did a little bit of boot camp for sleep, per the recommendation from his cardiologist. In the hospital they make them eat on a 3 hour schedule, so once we came home that’s what he was used to. After he recently started only snacking on his bottle and falling back asleep instead of actually eating, we figured he was waking out of habit and not necessarily hunger. So we let him fuss it out a little and we’re now down to two night feedings with hopes of weaning the early morning one soon.

Unfortunately, because of the awkward layout of our little house, he and Whitlee pretty much share a room, so it’s hard to let him cry it out even for a minute because I’m so worried he’ll wake her up.

Milestones:

  • Cut tooth number eight
  • Took his first steps!!

This is so major to us because due to the time spent in the hospital and just the toll a heart condition and two open heart surgeries takes on the body, physical and developmental delays are super common with heart babies. But Huck has seriously not missed a beat since we’ve been home. I even went back and looked at when Whitlee took her first steps because it was pretty early. Well, she took her first steps the week before she turned 10 months. Huck’s first steps occurred…. the week before 10 months. What?! Since then, his confidence is growing and he’s taken many steps and will stand on his own.

He’s also started saying dog. So we have da-da and dog.

Spoiler alert – he does finally say mama but it technically didn’t happen until the next month!

Medical Milestones:

We have been going to physical therapy once a week in Houston and he has made excellent progress with his torticollis. They also started helping him engage his glutes when pulling up and showed me exercises for him to do at home to encourage it. I really think this is what set the walking in motion, just gaining strength and balance at physical therapy and the fact that I work with him on developmental stuff pretty much every day since he’s been home.

But he took a few steps for them finally and they said as soon as he’s walking well on his own, we’ll probably be done with PT!

Likes:

  • Eating big people food
  • Whitlee
  • Maggie (our dog)
  • Any dog, really
  • Being outside, always
  • Being out at the shop
  • Playing with daddy’s tools
  • Pulling hair
  • Baths
  • Trucks
  • Anything that lights up or makes noise
  • Snuggling with his blanket

Dislikes:

  • Being cold
  • Having a dirty diaper, he wants to be changed almost immediately
  • Getting his face wiped

Huck’s little personality has seriously started to shine lately and he’s such a silly little guy. You can usually get him to smile with just a funny face and he’s very particular about what he wants. He’s obsessed with dogs and kids, will take you down for a bite of peanut butter, and can unroll an entire roll of toilet paper in about 3 seconds flat. Happy 10 months, sweet boy! You are the perfect completion to this already crazy family. ❤️

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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. ❤️

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!

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!

Huck | 3 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 | 62 cm

He is wearing size 2 diapers and mostly 3 month clothes, but a few of those are starting to get snug length wise. He basically just blew right through that size.

Eating: Huck is currently eating 85-100 mls of breastmilk (roughly about 3 ounces, give or take a few mls) about every 3-4 hours. He was made NPO (nothing by mouth) for a week due to a bloody poopy diaper and that hindered his volume capacity a little but he’s finally doing a lot better.

Sleep: His daytime sleep is still fairly consistent. He’s normally sleeps until about 8 AM, gets a bottle, then meds, and lovenox about 9 AM, takes a shortish nap, gets his weight done, a bath, and lead sticker change, followed by another bottle and meds, then a really long nap from about 12-2/3. He’s usually awake and happy around 3 PM where he will eat/play/cat nap until around 5:30. He’s been eating less and sleeping more at night which the doctors and I are both good with. He’ll normally eat again about 9 PM, sleep a good stretch, eat again around 2-3 AM and sleep another good stretch.

He still sleeps a lot in the mamaroo which helps his reflux a lot, but will also sleep pretty decent in his bed, in his “nest” that they make for him.

Milestones: He rolled belly to back for the first time and has had a few little laughs! He also sits up assisted and can control his head and body really well.

Medical Milestones: Thankfully, nothing has changed majorly since 2 months. Currently still inpatient on the CVICU heart failure unit while we wait on our Glenn surgery. We will be here until then. He is on milrinone and clonidine + reflux medications + a twice daily diuretic. He is not on any respiratory support at the moment and taking all feeds by mouth. He is finally off tpn and lipids, but still getting therapeutic doses of lovenox for a blood clot in his picc line. The Glenn should be happening in the next few weeks!

Likes:

  • Being held / rocked
  • The mamaroo
  • His playmat
  • Anything with lights and sound
  • The bumbo chair
  • Warm milk
  • Listening to Elvis (it seriously calms him down immediately)

Dislikes:

  • Diaper changes
  • Picc line dressing changes
  • Baths
  • Lovenox shots
  • People messing with his feet

I can’t believe this little guy is already a quarter of a year old. It seems like it’s both flown by and crawled by. I love getting to know him and spending time with him and seeing him with his daddy and his sister. His next surgery should be very soon and if everything goes as planned, we should be home not too long after that. For the first time, all four of us will be together under one roof. I can’t hardly wait! ❤️

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Huck | One Month

Our sweet little Huck was one month old on June 13 but as usual I’m a bit behind. When comparing to Whitlee’s one month update, this one will be a little different since he’s in the hospital still but I want to document his milestones, nonetheless.

Stats: Hospitals go by grams, but I’ll translate. Huck was born at 3035 grams which converts to 6 lbs 11 oz and is now up to 3950 grams which converts to 8 lbs 11 oz. So he’s up two whole pounds! This is amazing for a heart baby and the fact that he didn’t get to eat anything until he was several days old, and has been intubated twice more inside his first month and was held on feeds during those times. (Has technically been intubated 4 times now – once for surgery, twice afterwards, one more inside the second month.)

Eating: Huck is currently eating 80 to 100 ml (2.7 to 3.3 oz) of regular breastmilk at each feed, typically about every 3 hours. Sometimes a little sooner, sometimes a little later. His doctors have him listed as “ad lib” which means he can eat whenever he is hungry as opposed to scheduled feeds.

[Side Note – I don’t think I’ve mentioned this before, but Huck actually participated in a research study when they first started feeding him. I’ll try to sum it up quickly but basically a company called Prolacta created a human milk based fortifier from pasteurized donor milk and by using that fortifier instead of a milk based or amino acid based formula fortifier, they have been able to reduce the percentage of NEC (necrotizing enterocolitis) in NICUs around the country from 10-12% down to 2%. Fortifiers are used in babies that have low birth weight or have had delayed feeds for some reason, so someone had the idea of using the same fortifier in heart babies as well, since they have delayed feeds or decreased volume due to surgery and/or the overload on their hearts. They’re currently in the study phase of that idea, comparing babies that have the human milk fortifier vs a formula fortifier to see if they tolerate feeds better, have reduced NEC, and have improved growth or development. Here’s a link if you’re interested in reading more.]

Anyway, so how this worked for us is that when they started feeds, we knew Huck would get a fortified version of my breastmilk. By participating in the study, we did not know if he would get the human milk fortifier or the amino acid based formula fortifier that TCH uses as their standard care, it’s all a secret to protect the integrity of the study. We will eventually know which arm of the study he was on when the study concludes in 18 months. When we were supposed to go home, they had to transition him off of whichever secret “study milk” he was on, to be solely on my breastmilk with a known amino acid based formula fortifier. Well he rejected every single bottle that was not labeled “study milk”. I have no proof, but you can probably guess where I’m going with this. So we tried a different amino acid based fortifier and he did a tiny bit better, but it was still a struggle. Then he coded, was intubated again, and when he was extubated, he would barely eat at all. Like we fought to get him to take 20-25 mls. There was talk of putting an ng tube back in, there was suspicion that he was having major reflux issues, maybe tube irritation from intubation, we just weren’t sure. All we knew was he wouldn’t eat and it was so important for him to eat and gain weight. One day, while I was pumping, his intensivist and a cardiology fellow were in the room and we were discussing the feeding issue and they suggested that whatever I just pumped, let’s give him that and see what happens, so just straight breastmilk. We started slow with half a bottle but he downed 30 mls in about 5 minutes, then took another 30 without batting an eye. The next feed, he took about 70. And the next, I think was 77. And he’s ate wonderfully ever since then. They decided as long as he gained weight, he didn’t need the fortifier. So far, so good!

I’m exclusively pumping for him like I did for Whitlee, but with Whitlee I had an oversupply which led to 3 rounds of mastitis. I purposely decreased my supply this time to hopefully match more of what he would eat at his max point. I loathe pumping but since he apparently wont eat anything else, I have to stick it out.

Sleep: He sleeps pretty well for the most part. When we were on the inpatient cardiac floor, I could stay every night with him and he would eat and usually go right back to sleep. He normally has one or two periods where he’s awake for about an hour and looks around a lot but he still snoozes quite a bit.

Milestones: Because of his surgery, tummy time is delayed until 6 weeks but when he lays on my chest, he picks his head up and looks around.

He loves to look at faces. He has an intense stare and can track really well with his eyes. He’s been tracking since just a few days old.

He also furrows his eyebrows a lot and is very strong. A lot of his nurses call him “the hulk” instead of Huck.

We’ve gotten lots of smiles. Still questionable if they’re real smiles or not, but they’re appropriate for when he seems happy, so I’ll take it.

Medical Milestones: He had his first open heart surgery on May 16 at 3 days old, a double barrel DKS Norwood with BT shunt. Also taking full feeds by mouth and normally isn’t on any respiratory support. (He’s currently intubated while I’m typing this post.)

Likes:

  • Being held
  • Rocking and bouncing
  • Watching the mobile
  • When we talk to him
  • His pacifier
  • Holding hands with his nurses when they do his EKG’s
  • Having one arm next to his face
  • Oral care

Dislikes:

  • Diaper changes
  • Waiting on a bottle
  • Getting an echo done
  • When they hold his arm still during blood draws. He doesn’t cry when they stick him, only when they restrain his arm.
  • Being swaddled with both arms in

I posted his one month picture on my instagram and the Huck’s Heart Facebook and said that I never expected when we decided to have a second baby that this is what our life would look like, that I’d be taking his monthly pictures in a hospital room but here we are. I’ve been asked quite a few times how I’m holding it together and if I’m being honest, everyone sees the public version of me. I’m not perfect and I have fallen apart a few times in private, but then I’m reminded that our baby boy is alive. No matter how scary it gets, or how hard this is, or what curveball we get thrown each day, he’s alive. And we will continue to fight right alongside our little guy for every day that he continues to fight too. ❤️

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