8 weeks ago, our lives changed forever.

8 weeks ago we became a family of five when we welcomed our identical twin sons, Emmet and Finn, into the world at 25 weeks and 2 days.

People say the day that your child(ren) is (are) born is the best day of your life. For us, it was one of the scariest days of our lives.

On one hand, I’ll forever be grateful for our short time with Emmet, as I remind myself that some parents don’t get that. I’ll always remember the way he smelled, the way his skin felt against mine, how tiny he was and the noise he made as he gasped and took his last breath laying on my chest with Kevin’s arms wrapped around us.

On the other hand, I’m so angry. His 13.5 hours of life were not enough. Emmet fought every second of his short life; his heart failed him multiple times, and it was obvious that he was in pain. Now the pain we feel is crippling. There will always be an Emmet-shaped piece of our hearts missing. My only hope is that Kevin and I provided him comfort when he needed it and he heard us saying over and over again how much we loved him and that we were so sorry that there was nothing we could to protect him.

The NICU is an extremely hard place to continue to be when you’ve lost one of your twins. You are literally surrounded by rooms filled with twins at every turn, and each day we return to the place where our son died on July 24th. Every milestone for Finn is bittersweet because I constantly catch myself thinking that I should have two babies who get to meet their big brother, reach a weight goal, get moved to a crib, etc. I’m not sure this will ever go away. In fact, I know it won’t, because Emmet will always be a special part of our family.

Finn is the tiniest and strongest person I have ever met in my life. In his 8 short weeks he has been intubated for four of them, poked and prodded hundreds of times, and has had more labs drawn than most people in their lives. He’s had his PDA (heart valve) treated twice and had multiple ultrasounds of his heart, had head ultrasounds to monitor brain bleeding (which has been minimal since day 1), been under phototherapy for jaundice, had six blood transfusions, beat pneumonia, has been weaned from narcotics and caffeine, is currently on his second course of steroids for his lungs and continues to have very uncomfortable weekly eye exams. He’s continuing to learn to regulate his own body temp (doing well on day 9 out of his incubator!) and take breaths on his own. As of today, he has gained 2 pounds, 4 ounces since he was born; he’s developed his own cry and baby sounds; and we have even seen a few (half) smiles.

In the last 8 weeks, Kevin, Dermot and I have learned so much. Dermot has learned to be flexible and (a bit) more patient. Kevin and I have felt true heartache and loss over Emmet’s passing, all while trying to remain hopeful for Finn and optimistic for his future. We’ve learned the names of (what feels like) hundreds of nurses, doctors and respiratory therapists. We have become accustomed to all the beeping, dinging and alarms that sound round the clock in the NICU — we know which ones to tune out and which one means Finn is in a deep sleep, forgetting to breath and needs a little stimulation to be reminded that breathing is important. We’ve become accustomed to hearing scary terms like bradycardia, desatted, brain bleed, retinopathy and chronic lung disease. We’ve been moved to tears so many times — but now more recently because of good things! For instance, I walked in last week and there was a crib in the hall with a sign on it that said “Reserved for O’Brien”. I stopped short and started crying and was then greeted by his nurse, who had a big smile on her face.

The sweetness and compassion of his caregivers is something that we will never ever forget. The love that all of the staff in the Beth Israel NICU has for our child is undeniable. The commitment of our families and friends in helping to take care of Dermot, providing meals, helping around our house and visiting with us in the hospital has been so incredibly amazing and we are forever in your debt. From Mom-Mom and Pops rushing up when my water broke to the daily babysitting that Nana and Uncle Jiiiiimmy (Dermot’s pronunciation) provide, you guys are all amazing.

This experience has been humbling, to say the least, and it’s not over yet. We’ve learned what’s truly important in life and have learned not to take anything for granted. It’s rocked the foundation of our lives at the very core and has changed us forever. Finn will never have his twin brother here on earth to go through life with, and that is a hard pill to swallow. Their due date was November 3rd and we know we will be here in the NICU until at least then. We set that date as our goal but are realistic in telling ourselves that having him home by Thanksgiving would be amazing and truly something to be thankful for.

Thank you for reading our posts and for your love and support.

Love,
Sha 

Finn is 50 days old today.

One thing that we have found during Finn’s NICU stay is that when you have a baby born as early as Finn was, you develop a greater appreciation for the little things that you tend to take for granted with full term newborns. We talked a couple of weeks back about how great it was to hear Finn cry (even if we should be filing that one under “Be careful what you wish for!”), and this past week, Finn took a couple of steps forward that make him seem less like a micro preemie and more like the growing, healthy 32-week gestational aged baby that he is.

On Thursday, September 8, Finn moved from his isolette (incubator) into a crib, and he started wearing clothes. He had been in the isolette from Day 1, as it gave him the help he needed in controlling his body temperature; that’s also why he’d been limited to just wearing a diaper. But, as with a lot of things, Finn growing bigger and stronger only helped matters, and the nurses decided on Thursday that the time was right to give him a shot in his big boy crib. At the same time, Mom took the opportunity to put Finn in a onesie (one that said “Tiny but Mighty” on it), and with the new onesie and swaddled in a blanket, Finn has kept a steady temperature right in the 98.6 degree range.

Finn’s battle to free himself from all breathing assistance remains an uphill one. A blood transfusion on Tuesday, September 6 (his sixth, but first in more than three weeks) didn’t have any sort of miraculous effect on the baseline pressure requirement for his CPAP, which had been bumped back up to 7 the previous day, nor his oxygen requirements, which had ticked up into the 35% to 40% range. Wary of any more regression, the NICU team suggested another round of steroids, this time a 22-day course of hydrocortisone, which is a bit less intense than the dexamethasone course he did previously. That started on Thursday, September 8, and while we were told that it might take 4 or 5 days to see the full effects, Finn is already back down to a CPAP of 6 with oxygen requirements of 23% to 25%. We’ve even discussed trying to lower his CPAP to 5 over the coming days — which is the lowest level.

Also on Thursday, September 8, Finn had his second eye exam. His right eye remained stable at Stage 1 ROP, while his left eye, which had been deemed “immature” previously, progressed to Stage 1 ROP. It’s something that will continue to be monitored, and Finn will have another exam in the coming week.

Finn is now up to 3 pounds, 10 ounces and gets 29 mL of breast milk every 3 hours.

As detailed above, Finn’s recent milestones include:

• On Thursday, September 8, Finn moved from his isolette into a crib.
• On Thursday, September 8, Finn started wearing clothes for the first time.

Finn is 44 days old today.

On Saturday, September 3, Finn met his older brother Dermot for the first time. And the meeting actually went better than Mom and Dad expected! Dermot climbed onto Mom’s lap while she was holding Finn, pointed to his baby brother and said, “Baby!” and then later pointed at him and said “Finn!” He then proceeded to open and play with the race cars that Finn “bought” for Dermot.

Finn, having sized up his giant older brother, clearly decided that he was going to need to bulk up to survive in this family — and that night he tipped the scales at 3 pounds for the first time! This means it took Finn exactly 6 weeks to double his birth weight, and he’s started looking a bit chubbier to Mom and Dad. Mom even thinks she’s seeing signs of a double chin… or it could just be because of the chin strap they’re using to keep him mouth closed for the CPAP. In any event, when they weighed him last night, Sunday, September 4, he was 3 pounds, 1 ounce.

As for other developments, it turns out that we might have jinxed Finn ever so slightly with our last post. His oxygen requirements have increased just a bit over the past few days, and he’s generally sitting in the 30% to 33% range at this point — but he’s still on a CPAP pressure of 6, and his heart rate is still fairly steady in being a bit on the higher side, but not constantly tachycardic.

We do expect that he’s likely going to need another blood transfusion, and while this means that Finn isn’t quite where he needs to be from the standpoint of sustaining his own blood production internally, the upside is that a transfusion should hopefully moderate both his heart rate and his oxygen requirements.

Repeating the above, but Finn’s recent milestones include:

• On Saturday, September 2, he met his older brother Dermot for the first time.
• On Sunday, September 3, he weighed in at 3 pounds (1370 grams) — or double his birth weight.

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 is 36 days old today.

Today is day 6 of his steroid course and four doses remain.  Over the past 6 days, like with everything in the NICU, we have seen some positive outcomes from the steroids and also some negative ones as well.

We will start with the good news: as of this morning, his CPAP pressure is now at 6. Finn started out at a level of 8 and has slowly worked his way down.  This means that right now his lungs are requiring less pressure to remain open than they were when he first started on CPAP.  His oxygen levels have remained between 23% and 25% pretty consistently since starting the steroids.

And now for the downside: “roid rage.” In babies in the midst of a course of steroids, you will often see increased heart rate, weight loss, and more feistiness (which we all know he doesn’t need!).

Taking those in turn, Finn’s heart rate has been elevated since he started the steroids (which is a common side effect).  He was receiving caffeine when intubated to help him keep his heart rate up and avoid spells, and when he first transitioned to CPAP, the NICU team had maximized his caffeine dose to help him avoid reintubatation.  Since starting steroids, however, his heart rate has continued to remain higher than they would like to see, so his caffeine dose is now being weaned.  The hope is that once the steroids have been completed — his last dose is scheduled for Tuesday morning — that his heart rate will return to a comfortable range.

As for his weight, before starting the steroids, Finn was tipping the scales at 1060 grams (about 2 pounds, 5 ounces).  Shortly after the steroid course was started, he lost 30 grams (1 ounce) and has now regained 10 grams.  They are adding “HMF” (human milk fortifier) to his breast milk to increase the calorie and fat content, and he is also on a cocktail of supplements, including Vitamins D and E, Iron and Sodium.  He continues to receive 20 mL of breast milk per feed every 3 hours… and the deep freezer was delivered last weekend to house Mom’s round-the-clock output. We are looking forward to the day that he is eating more and can work his way through the freezer stash!  Finn’s weight today is 2 pounds, 4 ounces.

We have been forewarned that it is not uncommon for babies to temporarily backslide once they complete the steroid course.  This means that we might see his oxygen requirements increase in the coming days, and we might also see his baseline pressure requirements move back up to 7 — but this should be nowhere near the support he was receiving pre-steroids.  His doctors, nurses and respiratory therapists have told us not to be discouraged by this, and that as he continues to grow, his lungs will continue to become stronger and level of support needed will continue to decrease.

Finally, as for his increased feistiness… he’s now showing us he’s not happy by crying! This is something you take for granted, or let’s be honest, may even become bothered by with a full-term baby.  But after having an intubated child for a month — one who would sadly look like he was crying, but no noise would come out because the tube was down his throat — this is something that is music to our ears.  The louder the cry, the stronger the lungs.  So keep on crying, little buddy!

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.

Saturday, August 20, 2016 saw Finn turn 4 weeks old, reach a kilogram in weight (approximately 2 pounds, 3 ounces), get advanced to “full feeds” (19 mLs, or about 2/3 of an ounce), and have his picc line removed!

The neonatologist who took care of Emmet and Finn the day they were born was on yesterday and was the one to remove the 20 centimeter picc line that ran from Finn’s ankle up into his chest. After she removed it, she looked at us and with a smile on her face said: “This is one more step in the right direction. I want you to know that we don’t take picc lines out of babies that we are worried about.”

With that we took a deep breath. There are so many ups and downs in the day-to-day NICU life that you really have to celebrate the little things. To be honest, four weeks ago we weren’t sure that we would be here right now, watching our little fighter get stronger by the day and quickly approaching the one month mark!

So while we don’t usually do quick updates, we were really excited to share these milestones with those of you who have been following and cheering for “Feisty Finn” from afar.

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.