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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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! ❤️

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 | Two Months


Stats: Well Huck was born at 3035 grams which converts to 6 lbs 11 oz and was 3950 grams at one month which converts to 8 lbs 11 oz and now we’re sitting at 4420 grams which converts to 9 lbs 11 oz. So he gained two pounds exactly in his first month and one pound exactly in his second month. This is great because he needs to be at least a certain weight before his next surgery. Hoping he gains at least a pound a month! (But since it has taken me a few days to post this, he’s already crossed over 10 lbs!)

He is wearing size 1 diapers and just outgrew the last of his newborn clothes. Which caught me a little off guard and I realized all of the clothes we brought with us are newborn! Had to go buy a few new outfits because they want him wearing clothes now.

Eating: Huck is currently eating 50-60 ml of regular breastmilk at each feed, typically about every 3 hours. This amount is down a bit from 1 month due to some significant reflux issues. He’s slowly working his way back up though. In the past few days he has taken his old normal of 75-80 a couple of times.

I’m still exclusively pumping for him, still hating it, still sticking it out. 10 months to go. 😝

Sleep: His daytime sleep has gotten pretty consistent. He’s normally awake for an hour and is happy and playing, then naps for two hours. We’re still working on a night time schedule but last night he was awake and upset on and off from pretty much 6 pm to 11 pm and then he slept from midnight to 4 am, ate a bottle and got a picc line dressing change, then slept again from about 5 to 9 before he was ready to eat again. He sleeps mostly in the mamaroo now which helps his reflux a lot.

Milestones: We started tummy time! He got the all clear at 6 weeks post op and we started giving it a go. He doesn’t love it but he at least tolerates it for a short bit before he’s over it. He actually prefers to do it more on my chest than on the bed.

<<<<
e gotten lots of real smiles! And he's been cooing at me a lot lately.

< b>Medical Milestones: 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 couple of diuretics. He is not on any respiratory support at the moment and taking all feeds by mouth. He is still getting a little background nutrition help from tpn and lipids, and getting therapeutic doses of lovenox for a blood clot in his picc line. The Glenn is tentatively scheduled for 4 months old on September 13 but they will start discussing options at 3 months and 5kg weight.

Likes:Being held

  • Mamaroo
  • Laying on his back and looking around
  • Anything with lights and sound (I’ve been letting him watch newborn stimulation videos on YouTube and he loves it)
  • Warm milk

Dislikes:Diaper changes

  • Picc line dressing changes
  • Taking his medicine
  • Baths
  • Lovenox shots

We are so in love with this little guy and can’t wait to get him home. He is developing such a cute little personality and I’m so amazed at how well he’s handling being in the hospital. I guess he doesn’t know any different, but with as much stuff is hooked up to him, he really doesn’t seem to mind it much. I spend my days just hanging out with him all day, trying to have as close to a normal experience as I can with him. His doctors tells us all the time that life after the Glenn will be so much better and I’m starting to get anxious for that. Almost there!

Happy two months, sweet baby Huck! Mama, daddy, and Whitlee love you so much!!

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