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, five 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! ❤️



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!! 

Huck Inlow | 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. ❤️ 

Huck’s Heart | Update

We have decided to start a Facebook page so that more people can keep up with our sweet baby boy. It’s under Huck’s Heart and this is the link – https://m.facebook.com/hucksheart/

We have also decided to do shirts in honor of him. They will run from now until June 25, then they will ship direct to you from Bonfire. https://www.bonfire.com/hucks-heart/


This is was what was posted on our Facebook on Wednesday. The code happened at about 12:13 AM Wednesday morning. 

Last night our brave little guy took a slight turn for the worse. Yesterday, after all of the chaos from the night before, things had started to calm back down – they let him start eating again, and they had taken him off the ventilator down to an oxygen cannula, and then even down to room air by the afternoon. They wanted to monitor him in CVICU overnight before sending us back down to step down unit. This was blessing #1. Nolan and I fed him last night and got him settled for the evening and then we left to go get a little bit of sleep. About 12:30 AM my phone rang and they told me that Huck had started to code but they were able to catch it in time and they intubated him immediately. They said he was very sick, not quite sure what was going on, and that we needed to get there quickly. I think we made it there in less than 5 minutes. We found out later that basically what happened was that he got very mad and instead of his heart rate going up like it should and then coming back down to normal once he was calm, his heart rate just plummeted and his oxygen dropped dangerously low. They were able to avoid chest compressions because they were in the room when it happened and able to intubate so fast. Blessing #2. They were able to do an echo last night and ran extensive labs to check all of his other organ function and check for infection, but everything looked good and his heart and shunt are all functioning correctly. So currently their theory is that this “crash” was possibly related to one of his medicines. Thankfully they have him stable and although he’s still intubated, he’s breathing above it a little. And they have a plan to adjust his meds and get him “well” again. It’s so crazy to think we were supposed to go home yesterday and this crash would have happened our first night at home if they hadn’t caught the previous malfunction and if they hadn’t been in the room when it started to happen, we could have lost him. Blessings #3 and #4. Again, we are so thankful for where we are and the wonderful nurses and doctors at TCH. Please please continue to pray for our little love!

And this was posted Friday morning. 

Huck had a good calm day yesterday and a good calm night for the most part. He’s starting to wake up quite a bit which irritates him when he realizes he’s intubated. The problem they were having when he coded was that his heart rate wouldn’t accelerate properly and then normalize, it would just crash. So they made the decision yesterday to basically start from scratch. They took him off all of his blood pressure and arrhythmia medication and let his body reset. Throughout the night, he had a few times where he would get mad, but his heart rate actually went up and then back to “normal” like it should have, which is a great improvement! He also had his repeat echo this morning and they all agree that function looks great and has improved from the last echo that had landed him back in the CVICU to begin with. The plan for today is to extubate a little later today, after the echo is formally reviewed and they make sure the rest of the team agrees with the plan. They’re watching him super close while they keep him off the meds so they can see where he’ll settle out naturally after they extubate. This picture is from last night when Huck started to wake up more and he just stared at me and his daddy for the longest time. We are so happy to see his sweet face awake again!

Thank you so much to everyone for sharing and commenting on our page and for purchasing tshirts. I would love to be able to comment back to every one of you but I’m doing good just to get an update posted. 😊 Just know that we appreciate every prayer, every well wish, every thought! Huck’s army is the best!!

Huck’s Heart | Norwood Surgery

After we were able to get Huck here safe and sound and give his team of doctors time to come together on his condition, they were finally able to map out the anatomy of his heart well enough to make a plan. We originally thought he had hypoplastic left heart syndrome but after we transferred care to Texas Children’s they found it was not HLHS, but a rare combination of several different defects. He actually has coarctation of the aorta, l-looped ventricles, tricuspid artesia, congenitally corrected transposition of the great arteries, atrial septal defect, ventricular septal defect and a severely hypoplastic left sided right ventricle. For any normal person, these are all crazy to understand but heart parents/families will probably get some of them. But basically he is a single ventricle baby and his blood flow was restricted in a way similar to HLHS babies and requires the same series of surgeries – the Norwood, the Glenn, and the Fontan. They thought maaayybe if his VSD was large enough and his arch wasn’t a problem, then he might get to skip the first surgery and just do a Glenn and Fontan but both ended up being too small so he definitely needed surgery within a few days. 

Huck was scheduled for surgery Tuesday, May 16, 2017 at 7:15 AM at 3 days old. We got to the hospital early that morning and they let us both hold him a while before they came in and got started. He had a great, restful night the night before and slept the whole time we were holding him. 

They took him back about 7:30 and we waited in the CVICU waiting room. They came and gave us updates about every hour and a half and it was so comforting to see that door open and Kim (our point person for the day) smile and say, “Everything is going great.” The she would tell us where they were at in the surgery and how he was doing. 

About 4:00 PM they came back and said they were done with all of the repairs and he did great. They were about to start warming him back up and try to bring him off bypass. We knew there was a risk of him not coming off bypass immediately and going on ECMO (a longer term bypass machine) so we were anxious for that next update. Around 5:30, we got the update that he was off bypass, his newly repaired heart was beating on its own again, and they were about to close him up. Such great news! Then about 6:00 PM, we got the post op update from our amazing surgeon. He drew us a picture of what exactly they did, which was a Norwood with BT shunt and a arch repair with coarctectomy. He told us he did really well and there were no complications. 

We got to go see him about 7:30 and he actually looked good for what I was expecting. We’re so proud of our little guy and how well he did. 

Below this part are some pictures of him so if you’re unsure you want to see, I’d skip past this part. He is hooked up to a lot of machines and it looks a lot scarier than it is but a lot of is precautionary. He has multiple monitors, catheters, and iv lines and is on a ventilator but they’re already talking about taking him off the vent tomorrow. 


Recovery is going really well and they’re already turning down some of his meds to let him start waking up occasionally. I’m actually typing this less than 24 hours post surgery and he opened his eyes for the first time earlier this afternoon while we were there. He looked sleepy but I was so happy to see his little face awake again. 

Thank you again to everyone for their abundant prayers and thoughts. We feel so blessed to have such an army behind us praying for our baby boy! 

#hucksheart #heartofawarrior

Huck Inlow


Huck Inlow Hillin entered the world on Saturday, May 13, 2017 at 10:09 PM via successful VBAC. He weighs 6 lbs 11 oz and is 20″. 

We are both doing well and should have a plan for his heart in the next day or so! We are all so in love with him and can’t believe how good he looks and how calm he is. He is very alert and seems to be tolerating his procedures pretty well!

Full birth story coming soon!!

Huck’s Heart | CCHD Mama

I feel somewhat like I’ve been hiding something from my blog friends but this has been a hard post to write. I’ve actually started and erased several times but now that we know where we’re headed, this will become my place to not only track and record the rest of my pregnancy but the journey of our sweet baby Huck. This post is long but getting to this point has been sort of long in real life already, and we have even longer roads ahead of us. 

January 20th is a day we won’t ever forget. That’s the day they told us our baby only has half a heart, unofficially diagnosing him with Hypoplastic Left Heart Syndrome (HLHS). We knew after our anatomy scan a couple of weeks ago at 20 weeks that something was off but our OB’s office reassured us that it was probably just a positioning issue or that he was too active, and they scheduled us to come back to check again at 22 weeks. I researched fetal hearts to what I thought was an insane amount so when we went back I knew what his heart should look like. When the scan started, and she checked his heart, I knew it wasn’t all there. Without recounting several conversations with different office staff word for word, I’ll say that my doctors office treated me very poorly that day, doing a follow up scan without plans in place for there being a problem. They apparently intended to do the scan and send me home to wait for a phone call, whenever that would be, but after I demanded some kind of answer and they sent me out to the waiting room basically in hysterics, they somehow tracked down my doctor and had him review the scans and he simply sent his RN to talk to me. My family and I are all so appalled at their lack of compassion when they clearly knew there was a critical issue. It makes my blood boil to even type this much of it. The RN ended up telling us they were referring us to a Maternal Fetal Medicine doctor for a level 2 ultrasound and fetal echo. We weren’t sure how soon this would happen but she said she marked the paperwork “urgent”. 

The next day we got the phone call that we’d be seen in two days at UTMB in Galveston, Texas. I had been praying it would be fast, but was pleasantly surprised at just how fast.

On January 20, we left bright and early and drove 2 and a half hours to Galveston to our appointment. Everyone there was so insanely nice and understanding. The tech started the ultrasound and explained every single thing she was taking pictures of. She got in depth measurements of so many body parts and organs, again confirming he’s a boy (fourth check now) and helping Nolan understand exactly what he was seeing on the large screen on the wall. He’s never had anyone take the time to show him and he’s always a little unsure of what he’s seeing, so ultrasounds haven’t been that exciting for him. But this time because of the time she took and the quality of the machine, he saw everything from 5 little toes and 5 little fingers to lips and nose. We even saw Huck playing with his toes and putting his hand in his mouth. We saw him opening and closing his mouth and flipping around like crazy in there. When the tech switched over to the fetal echo and started on his heart, she went silent. We knew then something was truly wrong. She scanned and took pictures for well over 30 minutes then left to get the MFM specialist. He came in and looked at the ultrasound machine with the tech, asking for specific views himself. He asked if we had any family history of congenital heart defects and we said no. He left to get a book of pictures and brought them back to us. He showed us a normal heart and then an HLHS heart and explained that he either did not have a left side or that it was severely underdeveloped. He said he was referring us on to a pediatric cardiologist and they would try to get us in very quickly with him as well. That visit would be in Pearland this time, which is two hours from us. We asked a few questions about how it happens, what his outcome would be and what life would be like for him. He explained the best he could that sometimes it’s genetic and sometimes environmental and sometimes just random chance. He said Huck would need a series of (hopefully) three reconstructive open heart surgeries starting when he’s born and ending when he’s a toddler. He said that 20 years ago this defect was fatal. But they’ve come a long way with this reconstructive surgery series and now babies are living into their 20’s. There isn’t much data past that because it hasn’t been around long enough. He was optimistic that while he probably wouldn’t ever be an athlete, he had chances to live a fairly normal life. 
From there we notified family and close friends about what we’d found out and waited for the phone call about his next appointment.  

We got the call on Monday the 23rd that our appointment with the pediatric cardiologist would be Thursday the 26th. I made a list three pages long of questions I had. I knew some of them wouldn’t be able to be answered just yet until we find out about my OB care.

So today we saw the pediatric cardiologist and got confirmation that our sweet baby boy has been diagnosed with Hypoplastic Left Heart Syndrome. We were able to ask a lot of the questions we had about his quality of life (which should be fairly normal once he’s past the surgeries) but mostly just confirmed the diagnosis and treatment plan which will indeed be the three part series of reconstructive open heart surgeries, starting when he’s born. We felt really comfortable with the cardiologist and his experience specifically with this defect. He currently has a 27 year old patient surviving with it and doing well. Right now our doctors and his surgical team are making plans for Huck, monitoring both of us, and we will find out more a little later around 30 weeks. 

The goal of utmost importance right now is keeping me pregnant as long as possible. So we’re praying the preeclampsia stays at bay this time and a full term baby boy. That will give Huck the best shot at his life. 

I posted today on Instagram and now here, but I put that I debated if and when to start posting about everything but we want to celebrate his life and my pregnancy with him just like we would have otherwise. I will still continue to do my updates every 3 weeks and more updates on his heart as they happen. We still have a lot of unknowns to face and a long road ahead but we appreciate any thoughts and prayers sent our way. 

Thank you so much to everyone that has known about this so far for keeping us in your thoughts. We feel surrounded by love and know that we’ll be bringing Huck into a world that loves him so much already. ❤️💙