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.)
- 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
- 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. ❤️