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!

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Huck Inlow | 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 Inlow | 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’s Heart | The Grand Explanation 

I know I’ve been promising a video, but that has actually proven to be a little more complicated than I think I can take on right now, so I’m hoping this will help explain his anatomy and surgeries just as well. Also, disclaimer – I’m clearly not a doctor or a nurse, we’ve just learned as much as we can about Huck’s diagnosis and surgeries. If you are a doctor or a nurse and notice that I don’t have something quite right or maybe worded improperly, I apologize in advance! 🙂 The term “hypoplastic” will be used quite a bit. This just means “underdevelopment or incomplete development”. Okay, I’m done with the disclaimers. 

Huck was originally diagnosed with hypoplastic left heart syndrome (HLHS) when I was 22 weeks pregnant. This was diagnosed at UTMB. When we transferred care to Texas Children’s at around 33 weeks, it was later found that he actually didn’t have HLHS, but something similar. There’s a whole category of heart kids that are “single ventricle”, which includes hypoplastic left heart syndrome, hypoplastic right heart syndrome, and quite a few others. The common denominator is that all of these kids only have a single ventricle, and that most will require the same palliative three stage surgery series, but Huck’s heart is different in its own way; a rare combination of several different defects. For simplicity’s sake, you could say that his heart is fairly similar to hypoplastic left heart syndrome, but he has some other characteristics that make it different. 

So, I’ll take you back to anatomy class for starters. (Wishing I’d paid a lot more attention in college A&P these days!) A normal heart has two sides – a left side and a right side, made up of four chambers. The right side recieves deoxygenated blood “blue blood” from the body through two veins called the Inferior Vena Cava and the Superior Vena Cava. (Keep these two guys in mind for later.) The blue blood travels into the right atrium, down to the right ventricle through the tricuspid valve, and then is pumped into the lungs through the pulmonary artery. The blood is then oxygenated in the lungs to become red blood, and is pumped from the lungs into the left atrium, down to the left ventricle through the mitral valve, and then back out to body through the aorta and the aortic arch. 


First thing to address is that Huck only has a single ventricle, which means where a normal person has two lower chambers, he only has one, which is why, along with HLHS and HRHS kids, he essentially only has “half a heart”. He also has ventricular inversion, meaning his ventricles are swapped. His left ventricle is on the right and his right ventricle is on the left. But also, and this is where it gets a little complicated, add in that his “left sided” ventricle (which is actually his right ventricle) is hypoplastic. So he has what they call a “hypoplastic left-sided right ventricle”. 

He also has tricuspid atresia, which means his tricuspid valve never developed. (A little backstory – his tricuspid valve would have originally been on the right side of the heart, but with the ventricular inversion it ended up on left side with the “left-sided right ventricle”. The valves were actually what caught our fetal cardiologist’s attention, because she noticed that the mitral valve was on the wrong side of the heart, and then she realized that the characteristics of his single ventricle were more on par with a left ventricle but was on the right side. This led her down the line, hammering out each detail, until she pretty much diagnosed him prenatally spot on with what they determined after he was born. She’s a rockstar!)

So continuing on, he also has a hypoplastic aortic arch, also known as coarctation of the aorta, which means his aortic arch was severely underdeveloped. 

Then he has something called “congenitally corrected transposition of the great arteries”, or CCTGA, which means his two main arteries are actually backwards and would normally be considered a defect in itself called transposition of the great arteries (TGA) but because of his ventricular inversion, his arteries are connected to the correct ventricles, making it “congenitally corrected”. 

He also had a very large Patent Ductus Arteriosus, or PDA. A ductus arteriosus is a blood vessel that, before birth, exists in the aortic arch that connects the aorta and the pulmonary artery. This is how a baby like Huck can survive in the womb. It provides a route of blood flow that would have otherwise been restricted by his anatomy. Within minutes or up to a few days after birth, the ductus arteriosis is supposed to close as part of the normal changes occurring in the baby’s circulation, unless a baby is given prostaglandin to keep it open. In Huck’s case, his was very large and would have most likely remained open (which is why it is referred to as a “patent” ductus arteriosis), but he was on prostaglandins just to be safe. His PDA was actually assisting his heart function by allowing systemic blood flow to the body, where as his hypoplastic arch would have restricted it. The PDA was removed during the arch reconstruction portion of his first surgery. 

And lastly, he had a moderately sized ventricular septal defect (VSD) and a small atrial septal defect (ASD). The two septal defects are something a lot of people have heard of, commonly referred to as a “hole in the heart”. This picture below is the closest I have found to Huck’s heart. It shows the ventricular inversion, the CCTGA, the hypoplastic left sided right ventricle, the tricuspid atresia, and both septal defects. It is only missing the hypoplastic arch, which is shown in the second picture.




So how does a heart with these defects survive?

In a normal heart, the basic path of blood is oygen poor (blue) blood flows into the heart from the body, out to the lungs, where it is oxygenated (red blood) and returned to the heart, and then sent back out to the body. Red blood and blue blood are kept seperate. Since Huck is missing some of the key components to make this work and some of his anatomy is swapped, his blood flow is different. You can follow this in the picture above – blue blood flows in from the body and into the right atrium, red blood comes in from the lungs and into the left atrium. At that point, because the left sided ventricle and tricuspid valve aren’t there to do their job, it forces the blood back over to the right side of the heart, and all of the blood goes into the same area and mixes to become “purple blood”. Then the mixed blood is pumped both out to the body and out to the lungs. Purple blood is okay but not ideal long term. 

So for Huck’s first surgery, which was a modified Norwood, they had to make a few changes to Huck’s heart so that his blood flow to and from the lungs was adequate, and the blood flow to and from his body was adequate. The Norwood is usually done as a bridge to get a baby big enough and stable enough to support the circulation of a Glenn (second stage). The main issue for Huck was that because he doesn’t have a working valve on the left side of his heart, the blood doesn’t have a way into the left sided ventricle, and therefore it doesn’t have a way into the aorta and back out to the body. His VSD could have been used to their advantage because it allowed blood flow into the very small left sided ventricle from the back side, and would have allowed blood a way into the aorta, but his VSD was considered to be moderate and they didn’t trust it to remain open and a proper source of blood flow. To alleviate this issue, they connected his two main arteries (using a “double barrel” DKS procedure) and added what’s called a “BT shunt” to help control the blood flow to the lungs. They also removed the PDA and reconstructed his aortic arch (previously hypoplastic) so that blood flow from the heart out to the body was not restricted anymore and didn’t require prostaglandins long term. And they cut a little more out of his atrial septal defect to allow blood to flow more freely from the left atrium to the right, giving him more of a “common atrium”. This picture shows hypoplastic left heart syndrome and a homograft patch instead of a DKS, but it’ll give you an idea of how they join the two arteries into one big artery and where they place the BT shunt. 

The end goal for a single ventricle (a completed Fontan circulation) is to eventually bypass the heart completely for oxygen poor blood from the body, which will then go straight to the lungs. Then the heart’s only responsibility will be to receive oxygen rich blood from the lungs and send it back out to the body. 

For the next step in the palliation series, Huck just had his second surgery at 3 months 25 days. This surgery was a bidirectional Glenn, and they basically removed the BT shunt and connected his Superior Vena Cava (SVC) straight to the pulmonary artery. This is the first step in bypassing the heart for oxygen poor blood to the lungs. So, in a normal heart, oxygen poor blood from both the upper and lower body would normally go into the right side of the heart, and out to the lungs to be oxygenated, pretty simple. But in a Glenn, which addresses the upper body’s blood flow, the oxygen poor blood from the upper body goes into the SVC like it should, but the SVC is now connected straight to the pulmonary artery, which bypasses the heart and goes straight to the lungs. From there it will receive oxygen from the lungs, and go from the lungs into the left atrium, over into the right atrium where it will meet with the oxygen poor blood still coming from the lower body, down to his right sided left ventricle and then back out to the body. So essentially, he’ll have less “purple” blood (red and blue blood mixing). Also, not a standard part of a Glenn, but his surgeon performed a “right pulmonary arterioplasty”, which placed a patch on his right pulmonary artery because it was mildly narrowed in one spot.

During the third surgery, the Fontan, which will happen at about 4 years old, they will go back in and do something similar to the Glenn, but at that time, they will connect the Inferior Vena Cava (IVC) straight to the pulmonary artery like they did with the SVC. This will complete the Fontan Circulation and bypass the heart for all oxygen poor blood from the body to go straight to the lungs. At that point, Huck will have the closest thing to “normal” blood flow (blue blood from the body to the lungs, red blood from the lungs to the heart and back out to the body) that his body can have with a single ventricle.

Will he ever be “cured”? 

The thing to remember with all of this is that for a single ventricle baby, there is not a “cure”. They call this a palliative fix. Palliative generally means “providing relief from the symptoms and stress of a serious illness with the goal being to improve quality of life for both the patient and the family.” While they can’t reconstruct his entire heart or ever give him two ventricles, they can alleviate the problems associated with only having one ventricle and hopefully give him a long and happy life.

How long will he live?

Currently there are only people in their 30’s that have had this surgery series so there is really only data to that age, but our hope is that by the time Huck is in his 30’s, those people will be living well into their 60’s. In some cases, single ventricle babies end up needing a heart transplant and it’s even possible that some kids that have the whole 3 stage series still end up needing a transplant. That is something that will always be in the back of our minds. Huck’s single ventricle is doing all of the work, so there’s always a chance it could lose function and he could end up in heart failure. Huck does have a small advantage in that his single ventricle is a left, which is considered to be the “workhorse” of the two. He also has a small disadvantage in that his single ventricle has an area of “mildly depressed function”. We have been told it is very possibly for him to regain full function in his ventricle at some point post Glenn, just due the overall workload being reduced on the heart in comparison to a BT shunt circulation. But for factual sake and the statistical side of things, studies show that survival after the bidirectional Glenn and Fontan operations is nearly 90-95%. The mortality rate for single ventricles is usually highest between the Norwood and Glenn, what they call “interstage”. So when a baby makes it to their Glenn, it’s a big deal. Usually a pretty celebratory day around the CVICU! 

Will he have a normal life?

From our perspective, yes, we absolutely hope so. With that being said, living any part of your life in a hospital is not normal. Having 3+ open heart surgeries is not normal. Taking medication for the rest of your life is not normal. BUT we hope that Huck will be able to do anything he wants to do. Ability is individualized. It’s very possible that he will get out of breath a little easier, and pretty unlikely to participate in heavy contact sports (in protection of his sternum), but I have heard of many kids that play sports and have exceeded expectations. I posted a while back of a girl named Meghan Roswick, who is a 25 year old Fontan with HLHS that competed in gymnastics as a child and is a competitive skier now. It will all depend on him and how well his heart holds up. We plan to do all the normal things we would have done anyway – trips to the lake, playing chase around the house, family vacations, swimming lessons, preschool, normal school, just “life”.

It’s truly amazing what modern medicine can do now and we pray that it continues to progress. Texas Children’s has recently been ranked as #1 in the country for pediatric cardiology and heart surgery, so we feel confident that throughout Huck’s life, he’s in the best hands possible (we literally trust our surgeon with his life!) and they will do everything they can for our little boy. He is currently doing very well with his Glenn recovery but we are still working on crossing some things off the list before the “h word” is discussed. 

Huck Inlow | 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! ❤️



Whitlee Alyzabeth | My Big Girl

I haven’t posted much about our firstborn little love lately so I wanted to take some time to make a special post about our girl. Whitlee is 2 years and 8 months, and I am more in love with her than ever. She has truly handled our chaos with Huck so well and I couldn’t be more proud. Don’t get me wrong, she’s testing her limits with each and every person these days but I’m not 100% sure that’s not just her age in general. She has become such a social little girl and speaks to (almost) everyone she comes in contact with. I can’t help but think she’s making some of these people’s days.. there are so many that seem so sad where we’re at. 

She does something almost every day that either amazes me or has me in tears from laughing or usually both. Her perception and ability to retain information seriously blows. my. mind. I mentioned the bat colony here in Houston a couple of weeks ago and said something about going on a date. Then this past Saturday I asked if she wanted to go on a date with mama and daddy (said nothing about bats) and she said, “Yea! To go see the bats??” I was so shocked that she even remembered that. Nolan didn’t even know what she was talking about until I reminded him about the bat colony I’d mentioned. 

She absolutely loves her baby brother. She talks about him all the time and likes to pretend she’s his doctor when she visits him at the hospital. She listens to him with a stethoscope and then says, “okay, doing great!” It’s going to be such a change for her when he finally comes home because she doesn’t know that he doesn’t actually belong at the hospital forever. I think it’s going to be the sweetest / most trying / most rewarding thing ever to have both kiddos under one roof finally. 

I honestly can’t believe how independent she’s become over the last 4 months or so. It was like Huck was born and she suddenly became a little girl and not a baby at all anymore. And she’ll tell you real quick “I not a baby! I a big girl!” She sleeps all by herself in a big girl bed both at home and in the travel trailer we’re living in temporarily. She’s fully potty trained except for bedtime and does so good at telling us when she needs to go. 

I wish I could write down everything she does and says and convey the hilariousness of this child because whether it’s dancing in her extra big tshirt saying “I’m a princess!” or doing pretend voices or telling me her own bedtime stories, she is so full of life! Her latest special thing is hugging me and saying, “I really like you, mama.” Lord, help me remember that when she’s 13 and thinks she hates me because I permed her hair after she begged me to and ends up with “worm hair”… 😉

All of this being said, I hate that our family is so split up and I miss her with everything I have when I’m away from her. I think that’s been my biggest struggle so far; truly wanting to be in two places at one time. I try to make sure I take Saturday afternoons off from the hospital and spend quality time with her and Nolan, just the three of us – we go on Whitlee dates. Sometimes it’s just swimming at the RV park and sometimes it’s dinner out and watching thousands of bats fly out from under a bridge at sunset. 

One day I hope she reads this and knows how much her daddy and I love her with all of our hearts. That her brother wasn’t ever a replacement or that he was more important than her, but we wanted her to have a best friend for life in him and unfortunately he just ended up needing a little extra help and attention in his first few months. I hope she knows how absolutely proud of her we are and that we think she’s the bravest and smartest little girl ever. And that one hug from her makes everything okay again for me. I hope she knows I cry for her sometimes when she’s away from me because I wish I could have both my babies with me 24/7. But I hope she knows she’s made all of this just a tiny bit easier for me with the fact that she’s been so flexible. I like not having to worry if she’s having fun or being taken care of. And that every time she tells me she loves me, I know she was sent here by God to take extra special care of her mama. 

Whitlee Alyzabeth, you are loved in a way that no words will ever explain and I hope you never forget it. You will always be my baby girl. 

Huck Inlow | 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. 

We’ve gotten lots of real smiles! And he’s been cooing at me a lot lately. 



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!!