About 6 weeks into Henry’s stay in the NICU one of his nurses was reassuring me after a particularly difficult day (aka: NICU Mom Meltdown) and she said, “You know, we meet really lovely people at the worst moment in their lives. It’s ok to freak out.” I remember thinking that was a strange, but true, reality for our family. The best moment in our lives (Henry’s birth) coincided with the worst moment (his prematurity and hospitalization). It was pretty complicated to sort out emotionally. And that’s where all of you came in!
One of our coping mechanisms throughout this entire ordeal has been this blog. Sure, we would have found a way to record this time in Henry’s life for him one way or another. But we chose to do it in a way that we could share it with you. We needed to reach out for support and we needed to know people were reading and thinking about Henry. We also needed a place to be positive and share good news about his progress.
And, wow, did you deliver. Over the last four months there were 8,904 views and 525 comments on 39 posts. We can’t thank you enough.
Had Henry arrived as a full term infant, neither of us would have become mommy or daddy bloggers. But we’ve enjoyed connecting with all of you here so we don’t want to close up shop entirely. We’ll likely post pictures or short updates every once in a while but we’ll spare you the day to day and week to week notes about Henry’s eating, sleeping, and pooping. Also, feel free to find us on facebook where we’ll likely join the ranks of other parents out there who blab about their kids and family life online.
You guys are awesome. We love you. We couldn’t have gotten through the last four months without you.
On Tuesday, June 1st – four months to the day that he was born – we brought Henry home from the hospital. Henry was born during the worst snow storm this town has seen in the more than 100 years — the day before Groundhog day — and like Punxsutany Phil, he saw the rotten weather and decided to wait it out inside.
And he took his time.
Not only did Henry take another six more days of winter, he waited until the temperature topped 90 degrees before taking his first, deep breath of fresh city air.
Henry’s has had an amazing journey. His stay in the NICU was longer than most, but he left a very healthy, happy and chubby (7 lbs. 11 ounces!) baby. He had amazing caregivers — expert doctors and compassionate nurses — who took excellent care of him while he grew.
And now… what you really came here for… a giant chain of supper cute pictures of the world’s most adorable baby…finally at home.
Henry getting a goodbye hug from one of his favorite nurses, DeDe
Henry loving his hat from his cousins in Ireland
Henry safe and sound on the kitchen table after his first ride in a car!
We brought him home in the same outfit that his dad wore when his parents brought him home from the hospital in Peoria, Ill. We can’t say it’s the most masculine onesie ever made, but hey, it was the 1970s and apparently little boys wore ruffly collars, white belts, and pantaloons.
Henry settling in
…as in, a few days at most. That’s when the doctors say Henry can come home.
They’ve told us to bring in the car seat for the car seat test (Henry sits in the car seat and if he doesn’t de-sat he “passes.”) They are setting up his hearing test. They’ve started making our follow-up appointments with the developmental and speech specialists. They had us choose a pediatrician.
They won’t commit to a day yet so it could be Tuesday or it could be Friday. If the experience of other families is any indication, it could be that they say Tuesday and then it doesn’t happen until Friday. Either way the days of the NICU womb (as some of us NICU moms call it) are numbered. We’re thrilled! And we’re terrified. We can’t wait!! Henners is on his way.
Huckleberry has no idea what’s in store for him.
Henry pulled out his feeding tube on Monday night by himself (over it) and has been taking full bottles ever since. Something clicked, a light went on, he’s going for it. Just like when he was coming off CPAP, he may get tired and need a break. Or maybe not. Either way – he’s rockin’ the feeds! The doctors are watching over the next several hours to see what’s next.
Breaking: Henry took his entire feed — 80 CCs this morning — via bottle. This is a huge step forward on the path to a Henry homecoming. Until this morning, Henry had never taken more than 60 ccs by bottle and he only did that twice. In order for the doctors to be comfortable in sending him home, he needs to demonstrate for a few days that he can consistently take his entire meal all at one time — via bottle or breast — and since you really can’t measure breast feeding volumne, this is the clearest possible indicator of a job well done. Needless to say, Henry’s parents are extremely proud!
In the last few days Henry has taken between 50-60 ccs (out of 80) with the majority of his bottle feeds. This is up from last week when he was taking about 20-30 with each bottle feed. This is a good development because it would be much more straightforward for the doctors if Henry could demonstrate that he can eat all his feeds on his own with bottles (rather than nursing which requires a bit more guesswork and quite a few variables.) We’ve also continued to nurse in the hopes that he won’t reject it when we’re home. But. Whatever works and gets him home fastest – we’re sort of desperate to get him home at this point. It’s almost been four months and the GW NICU’s record for longest stay ever is 4.5 months. It’s one record we don’t want to beat! So, if Henry wants to eat his 80 ccs through a plastic syringe, we’ll make it work.
As is probably true for most babies, Henry can retain air in his tummy like nobody’s business. So we do lots and lots of burping. We love when we get a big one – then it’s all cheering and fun. When he can’t burp right away it’s lots of hushed “okay Henry, that’s ok, let’s try in a minute.” Here’s a picture Sean took of this important part of our routine. Sort of an action shot — hand all-a-flutter, mid-burp.
And here’s our little man after one of his successful bottle feeds over the weekend, all tuckered out and cuddling with what we now call his poop dragon. The poop dragon is actually a crocodile from IKEA but it’s fallen victim to two poop incidents in the last week (and somehow survived the washing machine and dryer). Somewhere in the mix of it all we started calling it the poop dragon.
Cross your fingers that this week holds as much progress as last week did!
Henry is still making progress. He has officially let us know that he prefers nursing to bottles. When we nurse his heart rate and breathing are nice and even and his blood oxygen level is between 95-100%. When we try the bottle he gets overwhelmed and sometimes he desats. In the worst cases his breathing slows and his heart rate drops below 90 (the dreaded “events” – which only happen during a bottle feed now.)
I’m thrilled that he’s taken to nursing (thrilled!) – but there are a couple challenges. First, it’s really hard work and it wears him out. It’s also more difficult to know how much he’s actually eating. When a baby starts eating in the NICU, apparently it’s usually all or in part by bottle and that makes determining how much they’re eating a little easier.
So. The doctors had us do a little experiment this week. We stayed at the hospital on Monday and Tuesday nights in order to exclusively nurse for as long as Henry would allow. During this time they measured his intake by looking at his urine output in his diaper and by looking at his weight. Around hour 30 Henry started loosing energy. He also lost a little weight and his diapers got consistently drier, so we stopped the experiment. He lasted about 36 hours before he needed a break. A pretty good start!
He’s resting today and we are back at home. The doctors are going to let us know the next step after seeing how he does over the next 48 hours. We might be headed back to the hospital to do “The Experiment: Take 2.” We’ll see.
We’re very proud of him. He’s working really hard to get the feeding down. It seems like his coordination is improving each day and he’s building the strength he needs to be able to eat on his own entirely without a feeding tube. Today he’s getting a visit from his uncle Nick and we’re hoping Nick’s triathlon ways will inspire Henry even more in the stamina-building department.
The video below is Henry during “the experiment” without his feeding tube. The picture below that is near the end of the experiment before they put the feeding tube back in. Tired little man.
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