Finn is 41 days old today — just a day shy of 6 weeks.

He completed his steroid course the morning of Tuesday, August 30, and we immediately began waiting anxiously for regression. And we waited… and we waited… and at the risk of jinxing anything, we’re now more than 72 hours removed from his last tapered dose of dexamethasone, and Finn is still at a CPAP pressure of 6, with oxygen requirements generally between 23% and 29%.

So it’s looking like the short steroid course was just the boost he needed to get over the hump. What’s more, the short-term negative side effects seem to be abating as well, as Finn’s heart rate has slowly declined into a more normal range over the past day or two, helped in part by stopping his caffeine dose. His spells haven’t really increased in frequency despite the lack of caffeine, and while his heart rate does still jump into the tachycardic (high) range at times, it seems to be gradually moving in the right direction.

Also moving in the right direction: the readings on Finn’s scale. As of last night, he was up to 1240 grams (just shy of 2 pounds, 13 ounces). He is getting 24 mL of breast milk every 3 hours, and is taking his feedings like a champ.

Yesterday morning, Thursday, September 1, Finn had his first eye exam. They didn’t ask him to identify the big “E” — he can’t really see much aside from dark and light contrast at this point, and even his older brother Dermot isn’t precisely sure which letter E is, after all — but they did check for signs of retinopathy of prematurity (ROP). ROP is a condition characterized by abnormal blood vessel development in a baby’s retinas, and is something that nearly all micro preemies wind up with. Finn’s left eye is currently “immature,” which means he has no real retinal development yet, while his right has Stage 1 ROP. It’s something that, as one of Finn’s nurses put it, will likely get worse before it gets better, but ROP is par for the course for babies like Finn, and it will be monitored every couple of weeks to make sure no intervention is needed. The hope is that it will fully subside as he moves closer to term (40 weeks gestational age, or November 3).

The eye exam aside, Finn has mostly been given a holiday recently from tests, bloodwork and the like. He’s scheduled to have blood drawn a few days from now, with the NICU team being particularly interested in his hematocrit level and whether he’s yet up to the task of producing all of the red blood cells he needs on his own. Finn hasn’t had a blood transfusion in almost three weeks, and while his doctors and nurses are happy to give him another one if he proves he needs it, the sooner his body can become self-sustaining when it comes to blood production, the better.

Finn’s recent milestones include:

• On Wednesday, August 31, Finn weighed in at 2 pounds, 9 ounces — up over a full pound from his birth weight.

Finn was one month old yesterday, August 23.

He’s certainly come a long way in the past 32 days, and on Monday, August 22, he took one of his biggest steps forward yet: he graduated from his ventilator!

Finn is now on a CPAP (continuous positive airway pressure) machine, which provides a baseline of pressure to his lungs and can provide him with extra oxygen as needed. The big difference between this and the ventilator is that Finn isn’t getting any breaths automatically; he’s getting help, sure, but all of his breaths are his own, initiated by him. This is a pretty big deal, needless to say, and we think it’s all the more impressive because when the NICU team here agreed that it was time to give him a “trial” off of the ventilator, it came replete with warnings that he may not be quite ready. So in this sink-or-swim proposition, Finn is happily doggie paddling along, now a full two days later.

He did get a helping hand last night (Tuesday, August 23) in the form of the beginning of a course of a steroid, dexamethasone. While he had taken to the CPAP, Finn was on some of the highest settings that the NICU team would be comfortable with (including oxygen settings between 40% and 45%), and any regression from there would likely have resulted in a swift return to the ventilator. We were initially pretty nervous at the thought of giving steroids to a two pound baby, but a number of discussions with the neonatologist, various nurses and respiratory therapists brought us around to the idea that though there were potential drawbacks, the risks of not giving him the medicine likely outweighed the risks of giving it to him. He got his first dose last night, and by early this morning, Finn was down to 25% oxygen (just a touch above the room air that all of us are breathing).

Tomorrow would have marked Finn’s 30 week gestational age, and so while he has a long way to go, we are so very proud of how far he has come.

Finn’s recent milestones include:

• As discussed above, on Monday, August 22, Finn graduated from his ventilator.

Finn is four weeks old tomorrow.

After all the commotion from a week ago, Finn has settled down nicely and things have generally been uneventful — and “uneventful” in the NICU is a really good thing. He finished his course of antibiotics for pneumonia this morning, Friday, August 19 at 5:00 am, and it certainly seems to have done the trick.

Yet another follow up echo on Wednesday, August 17 showed that the PDA (treated by two separate rounds of medicine by this point) was still trivial. So while it hadn’t yet closed, it also hadn’t reopened at all; there had been no change from the week before. Given that Finn was no longer showing any negative symptoms from it, the verdict was that we don’t really even have to monitor for it anymore; the natural process is that over the coming months, the PDA will close and become a ligament. So no heart surgery necessary, which (needless to say) is a great thing, and shows that his cardiovascular system as a whole is on the right track.

Not to be outdone, Finn’s respiratory system took a step forward this week as well. He’s still on the ventilator despite his best efforts, having extubated himself on three separate occasions, but he’s also doing the things he needs to do to lose the ventilator on a more permanent basis. The automatic breaths per minute given to him have been dropped all the way to 22 today after being in high 30s just last week (for comparison’s sake, Finn is breathing anywhere between 50 to 70 times per minute on average, so he’s doing a lot of the work on his own); the pressure behind those extra breaths has been slowly weaned; and his oxygen requirements are generally in the 26% to 32% range. A week ago, we talked to the neonatologist about how Finn was likely going to need a round of steroids to help bring his lung development along; now, we’re talking about continuing to wean him to see if he can graduate from the ventilator as early as next week without the steroids.

Definitely not unrelated to the foregoing is that Finn is now up to 15 mL (half an ounce) of breast milk every three hours, and he’s tipping the scales at over 2 pounds, 2 ounces. The more he eats, the bigger and stronger he gets, which can only help the development of his lungs (along with everything else).

And with bigger feedings inevitably come bigger poops… which is a good thing! Finn has been under the blue phototherapy lights off and on over the past 27 days as his bilirubin has fluctuated up and down, but bowel movements are the best way to flush out the excess bilirubin. So we’re hopeful Finn’s incubator will cease doubling as his “baby tanning bed” sometime soon.

Finn’s recent milestones include:

• (We missed one in the last post!)  On Friday, August 12, Finn upgraded from the tiniest diapers (WeePee diapers) to the Pampers preemie diapers. Sure, they’re a little big on him — they’re for babies 6 pounds and under, so he’ll be in them for quite some time — but after at least one blowout, he really needed the extra room!
• On Monday, August 15, Finn stopped his fentanyl drip, and he seems to be tolerating life without pain medication.

Finn is three weeks old today.

He’s had an eventful past 24 hours or so, with a number of spells yesterday morning and early afternoon prompting the NICU team to order labs and hold his feeds (after he’d just started up again about 36 hours prior). They were essentially trying to figure out whether Finn was just having a “bad day” or whether he might be fighting an infection.  A culture from his breathing tube showed some bacteria, though his blood tests came back with generally normal hematocrit and white blood count numbers, and as the neonatologist said, “He doesn’t appear sick” — meaning that he was being his regular old feisty self, moving and squirming all around.  They had started him on an antibiotic prophylactically  yesterday afternoon, and will continue that course for at least the next week to treat Finn as if he has pneumonia; it’s not clear that he actually does, but as of last night, he had improved considerably while on the antibiotics, so that seems to be the most prudent course moving forward.

After all of the blood tests yesterday, Finn is getting another blood transfusion (his fifth) today to try to restore his volume of red blood cells. They have also made some adjustments to his meds, increasing his caffeine (in large part to readjust for his recent weight gain) and reducing the volume of his fentanyl drip.

After Finn completed his second round of indomethacin on Tuesday, August 9, a follow up echo showed that the PDA, while still open, was “trivial,” which was a good sign. Neither the nurses nor the neonatologist heard a heart murmur over the past few days, though it sounds like there is a slight murmur today, so it’s something that bears watching. The PDA tends to open and close rather fluidly, and so we’ll likely see a follow up echo in the next week to check on its status.

Today, as Finn turns three weeks old the same day Dermot turns two years old, Finn is now over two pounds. He won’t be able to have a cupcake today like his older brother, but he just restarted his feeds at 4 mL every 3 hours after an ultrasound of his belly showed no issues there. The plan is to advance him rather quickly if he’s digesting well.

Finn’s milestones over the past few days include:

• On Wednesday, August 10, Finn weighed in at 910 grams, putting him over the 2 pound mark for the first time.

Finn is 16 days old today, and is doing his best to move past a few issues and onto the “feeding and growing” stage of his NICU stay.

We awoke in a panic earlier this morning realizing we had missed midnight calls on both of our cell phones and the house phone from the Beth Israel NICU (as Shannon said, “We failed our first test as NICU parents!”).  Luckily, the voicemail from the neonatologist started out, “Just calling to give you an update on Finn. He’s fine, everything’s fine…” The update was just that they had decided to put a hold on his feedings for the time being as a result of his PDA, as the heart murmur had been more prevalent over the past day or two.  An echo earlier today showed that it was a bit larger than it had been last week, and the NICU team recommended another course of medicine (indomethacin) to try once again to close it.

So Finn will start another course of medicine today for that, and won’t be able to eat again until probably Wednesday morning. While the doctor admitted that the impacts of PDA aren’t perfectly understood, the extra blood flow to the lungs could be causing Finn’s lungs to have to work harder than they otherwise would, which might help explain why he’s needed some extra oxygen (generally in the 30% to 40% range now, after being as low as room air, or 21%, a little over a week ago).

Meanwhile, Finn is still as rambunctious as a sub-two pound baby can be, managing to pull out his breathing tube for a second time at about 10:00 am this morning. He’s been on a low dose of fentanyl, an opioid, since he was about two days old —  since feistiness is good, but too much feistiness means that he can’t get comfortable enough to allow his heart and lungs to do their thing. The NICU team hopes to wean him as soon as they’re able to, but Finn hasn’t let them do so quite yet.

Finn is now two weeks old, has both eyes wide open (at least, when he isn’t spending most of the day sleeping), and is eating more and more each day.

The best news Finn received over the past few days was the result of his cranial ultrasound on Friday, August 5. Preemies are at an increased risk for bleeding in their brains, and substantial hemorrhaging can potentially have some pretty severe impacts on a baby’s later development. Finn had an initial ultrasound back on July 26 that showed just a small amount of bleeding in his left ventricle, a result that the neonatologist said he “would take every time” for a 25-weeker. That remained unchanged in a follow up ultrasound on July 28, and then this more recent follow up confirmed that same trajectory. In terms of big potential problems for micro preemies that Finn has been fortunate to avoid, his relatively clean cranial ultrasound results rank near the top of the list.

While Finn hasn’t had any additional follow up echoes on his heart since the one earlier this week, the nurses, nurse practitioners and neonatologist have been listening for a heart murmur through a stethoscope, and believe the PDA is continuing to close.

His breathing remains about the same, with no changes to his respiratory settings over the past few days — aside from when, at 3:00 am this morning, Finn decided to pull out his breathing tube!  Just yesterday, the nurse had seen Finn with his hand wrapped around his tube and said that he’d eventually be strong enough to pull it out, but not for a little while… though it seems like we once again underestimated Finn’s feistiness.

As of last night, Finn was weighing in at a bit under 1 pound, 13 ounces, and he’s been tolerating his feedings well as they’ve bumped him up slowly from just 1 mL every 3 hours on Wednesday morning to 5.4 mL every 3 hours this afternoon. The more he can eat, the faster he’ll grow — which, the doctor said, can only help his development, particularly that of his lungs.

Finn’s milestones over the past few days include:

• On Friday, August 5, Finn opened his right eye.

Finn is 11 days old today, and continues to make slow but steady progress.

The big news of the day was the result of Finn’s follow up echocardiogram on his heart. The echo shows that the PDA (the open valve that is pushing too much blood into his lungs), while still there, is much smaller than it was before they gave him one round of medicine. So the NICU team here believes the valve is in the process of closing, and they’re confident enough in that diagnosis to start increasing Finn’s meals to 2 mL of breast milk (every 3 hours).

Finn has managed to keep us on our toes over the past few days with his breathing, as he’s had a few “spells” per day where both his heart rate and the oxygen saturation level of his blood drops quickly, and he needs a little help to recover (be it just a friendly nudge or a temporary bump in his oxygen level). Spells are relatively common in premature babies, as their brains aren’t fully developed and often temporarily forget to continue to breathe, but knowing that doesn’t necessarily stop Mom and Dad from worrying each time Finn’s monitor starts beeping like crazy when his heart rate and oxygen numbers suddenly drop. He’s been upgraded a bit from room air (which is 21% oxygen) to closer to the 30% to 35% range over the past couple of days to try to limit his number of spells.

On to happier developments: Finn has, ever so slightly, opened his left eye!  Babies that are very premature often emerge with their eyelids still fused shut, so we’ve been patiently waiting for him to open them and see what’s going on in the world. We’re still waiting on his right eye (which we hope will follow in the next few days). In any event, he can really only distinguish light and dark at this point, so we keep telling him he isn’t missing out on too much.

Finn’s milestones over the past few days include:

• On the night of Monday, August 1, Finn weighed in at 1 pound, 9 ounces — the first time he’s been higher than his birth weight.
• On Wednesday, August 3, Finn opened his left eye.

Finn is now a week old, and it has certainly been an eventful last seven days!

Like any micro preemie, Finn has needed a lot of help, from a respirator to blood transfusions to phototherapy lights to countless other little helping hands. There are a million things the NICU team here at Beth Israel is monitoring, with the two most important being Finn’s respiratory system and his cardiovascular system.

The news is generally pretty good on both of those fronts. Finn did actually cry out a tiny bit when he was born, though given his gestational age, he was pretty quickly intubated and put on a respirator. After a day or so, he was switched to a high frequency ventilator — a big, noisy machine that pumped hundreds of breaths a minute into his tiny lungs — to try to stabilize his breathing, and he responded well to it. By Thursday morning, he was back on the regular respirator, and he’s made slow but steady progress since. He’s been weaned down from extra oxygen to regular “room air” at this point, and Finn’s respiratory therapists have slowly pulled back on the automatic breaths per minute that he’s being given as he assumes more of the responsibility himself. It will be quite some time before Finn is ready to breathe fully independently, but the doctors and we are encouraged by the early signs.

As far as Finn’s heart, the doctors are thus far seeing nothing abnormal for a 25 week micro preemie. His heart rate has generally been pretty good, as has his blood pressure. He is being treated with medicine for a patent ductus arteriosus (PDA), which is a blood vessel that is supposed to close after birth, but often does not in premature babies.  We should get follow up results on how that treatment is going in the next few days, but the early indications are generally positive.

Aside from that, things look pretty good considering the circumstances. He started in with meals on Wednesday afternoon, and was enjoying his 1 mL of breastmilk every three hours until they had to hit the pause button yesterday afternoon, just for as long as he’s taking his medicine for the PDA. He is still below his birth weight, which is to be expected — especially because this morning saw his first real poop!  Word is that his older brother Dermot is very proud. Both Dad and Mom have done diaper changes… though Dad has been responsible for more of them!

Mom has now had a chance to hold him three times, and it’s clear that Finn loves snuggling with her. He has a long ways to go before he can graduate from his isolette (his incubator) and be snuggled at any time, so Mom and Dad will take what they can get for now.

Finn’s milestones this week include:

• On Monday, July 25, Dad lifted Finn up and held him for the first time (as his nurses changed his bedding underneath him).
• On Wednesday, July 27, Mom changed her first diaper, and Finn had his first feed.
• On Thursday, July 28, Mom held Finn for the first time, as they did skin to skin for 45 minutes.

Identical twins Emmet Michael O’Brien and Finn Kelly O’Brien were born just after noon on Saturday, July 23. They were just 25 weeks and 2 days gestational age after being diagnosed with twin-to-twin transfusion syndrome only a week-and-a-half prior, and despite all efforts to have them spend more time in utero, the doctors determined that day that our babies would need to be delivered. They joined our family at 12:15 pm and 12:16 pm, respectively, each weighing 1 pound, 8 ounces.

The first hours of their lives were a blur, as doctors rushed to check their respiratory and cardiovascular systems, ensure they had enough nutrients, and undertake the countless complicated tasks needed to care for “micro preemies.”  While Finn was slowly able to stabilize after a blood transfusion and some other help, Emmet was not so fortunate. By 8:30 pm we were urgently rushing from Shannon’s hospital room to the NICU to be with Emmet, and as it slowly became clear that even the world’s best doctors and medicine wouldn’t be able to do anything for him, we were able to spend a precious few minutes holding Dermot and Finn’s brother.  Emmet passed away early Sunday morning surrounded by Shannon, Kevin, and his lifelong companion Finn.

Finn is now exactly one week old, and we are starting this page to provide updates to our family and close friends as Emmet’s brother starts the long process of preparing to come home.

Please feel free to read “Emmet and Finn’s Story” if you’d like the longer, more detailed version of how we got to where we are now.