Yesterday was the two year anniversary of the worst day of our lives.

We think about Emmet every day. It’s impossible not to — there are constant reminders of him in our daily lives, not the least of which is his surviving identical twin, Finn — so it’s not as if any day, even two years later, is easy. But we’d be lying if we said certain days aren’t harder than others, and yesterday, Emmer’s “angelversary,” was one of those days.

But I didn’t start writing so I could talk about our grief (mainly because I don’t think I could do any justice to that topic after Shannon wrote so eloquently on it a year ago). No, I wanted to write something today because, two years later, I think recent life events have given us something of a coda to Emmet’s brief life here with us.

Because yesterday was also the due date for our fourth child.

Our “rainbow baby” actually joined our family back on July 5 via a planned C-section. But when we’d found out that the baby’s due date was the same date that Emmet had left us… well, that was jarring, to say the least. We eventually came to see it as another sign that Emmet would always be present with us, and when we found out (in the delivery room!) that this baby was a boy, we further commemorated that presence by naming him Grady Emmet O’Brien.

“Baby Grady,” as his big brothers Dermot and Finn call him (never just Grady, for whatever reason), tipped the scales at 8 pounds, 8 ounces — exactly 7 pounds bigger than Finn and Emmet had been at birth. Even at 37 weeks and 2 days gestational age, however, Grady arrived with a bit of extra fluid in his lungs, and as he snuggled with his Mom in the recovery room just a couple of hours after being born, his constant grunting brought various NICU staff by, until finally the neonatologist who had been in the delivery room with Emmet and Finn, and who had eventually overseen Finn’s discharge 122 days later, almost sheepishly informed us that the fact that the grunting hadn’t stopped after a couple of hours meant that Grady would have to head down to the NICU for monitoring.

What might have been a devastating situation for many people wound up being, in some ways, oddly comforting for us. Grady spent about 54 hours in the NICU (most of that time on an IV, and a little over 24 hours of that time on CPAP) before rejoining his Mom down on the recovery floor. During that time, Grady was lucky enough to be watched over by both of Finn’s “primes” (primary nurses), the nurse who helped us to baptize Emmet, and plenty of Finn’s old doctors, nurse practitioners, nurses, respiratory therapists, social workers and other support staff.

Grady’s stay also gave Finn the opportunity to take a victory lap through his old stomping grounds. Exactly 1 year, 7 months and 14 days after we carried Finn out of the NICU in his car seat, he came running back in wearing his “Big Brother” shirt (before immediately pointing at his new brother and yelling “Poopy butt!”). Seeing Finn back in that NICU was a poignant reminder of just how far he’s come.

Perhaps even more importantly, though, it dawned on us that Grady’s NICU stay gave him the chance to spend time in the place where his big brother Emmet had lived and died. It’s a weird quirk of fate, but as we took our very first family picture with Grady — including the “Emmet bear” Molly Bear decked out in a “Big Brother” shirt that matched Dermot’s and Finn’s — it really did feel like there was no more fitting place for that picture to have taken place.

Grady was the first one of our kids to come home with us when we left the hospital, and he’s a healthy (and constantly hungry and sleepy and — yes, Finn — poopy) almost three week old. We think he’s going to be a big boy, and so despite the nearly two year head start, tiny Finn is going to have to start watching his back sooner rather than later.

And as for Finn: aside from his small stature putting him at a disadvantage in current and future brotherly battles, he is doing phenomenally well. Developmentally, Finn isn’t really behind the curve at all, and that’s without even giving him the benefit of the doubt of adjusting his age for his actual due date. Shannon is fond of saying that Finn is the only one who doesn’t know that he was a 25 weeker, and I swear that that’s right — he’s talking up a storm, playing imaginary baseball with whatever bat-like objects he can get his hands on in the house, and ordering the nearest adult to sit and read him whatever book he can get his hands on.

And the latter is exactly what he did when I went into his room to get him the morning of his birthday two days ago: he said “I read a couple books,” then proceeded to point up to his shelf to where the custom made The Story of my Twin: Emmet Michael O’Brien sat and said, “I read Emmet book.” And it was impossible for me not to tear up and hug him as we got to the end of that book:

Your twin I’ll always be

For I am you and you are me

So when you feel sad or just a bit blue

Take a moment and think of me

Look in the mirror and right on cue

I’ll be smiling back at you

We love you, Emmet, and all of us — Mom, Dad, Dermot, Finn and now Grady — miss you every day.

On July 23rd we saw Finn turn one year old, a bittersweet day in the life of parents to a twinless twin.  We have said before that we never want their birthday to be a sad day, and that is true.  But when July 24th marked one year since we lost Emmet, this was a seemingly impossible task.  We did our best and are glad that Dermot and Finn are too young to understand our grief.

I first want to start by giving a long overdue update on our one year old… still weird to say!  Finn is now 8.5 months adjusted, weighed 16 pounds 9 ounces at his appointment last week at Children’s Hospital and just continues to be amazing (and that’s not a biased mom talking here).  He also started CRAWLING on July 19th!

In the past month we have had check ups with all of his specialists:

• Infant Follow Up Department – Finn got to spend some time with Dr. Litt from the NICU at BIDMC (who had taken care of Finn for the first week of his life). Dr. Litt was impressed!  He had a developmental assessment conducted by a Psychologist as well, and she said he is doing great for his adjusted age.  They all noted how he looked like he was ready to crawl at any minute and literally that night after his appointment he took off!
• Opthomology – His Retinopathy of Prematurity has resolved itself nicely, and while he is a little farsighted and has a slight astigmatism, it’s “nothing we wouldn’t expect to see in a full term baby his age” and they will see him back in one year.
• Pulmonary – His lungs sounded great and his Oxygen Saturation level was 100%.  They did warn us that second winter can be just as bad as the first for micro preemies and to be vigilant with hand washing, Finn sharing things with Dermot this winter and watching him for cold symptoms.  They will see him back in three months.
• Nutrition – Pleased with his weight gain, and Finn continues to be on a growth curve.  He is small for his adjusted age, but as long as he continues to gain steadily they are okay with it.  They were very happy to hear how well he is doing with solid foods and that he loves chicken meatballs, black beans, avocado, peanut butter and more.  He is not a fan of pureed baby food and prefers to eat chunks of real food.  We will see them again in three months to talk about Finn’s transition to cow’s milk.  Right now he is still getting expressed breast milk with extra calories in it (and yes, I’m patting myself on the back here for making it to one year exclusively pumping!).  He is just starting to figure out a sippy cup.  You can see him crack a smile when he manages to successfully get a sip!
• Visiting Nurse – They stopped their visits at the end of June because he was doing so well.  Marie was a very caring provider and we will miss her.

Our biggest obstacle recently was Finn’s circumcision.  This took place mid-June with his Urologist and had to be completed in the operating room at Children’s.  His Pulmonologist had reserved him an observation bed at the hospital just in case he had any complications from the anesthesia.  The surgery went fine and when we were in the recovery room, in true Finn fashion, he pulled off his oxygen mask and showed the nurse he would trial himself on room air and that he was breathing just fine.  After some issues with his bandages we were sent home.  We ended up back in the Emergency Department the following night because he woke up from his nap and his diaper was saturated with blood.  After a few hours in the ED we were able to come home and it was smooth sailing from there, but not before many nurses popped into our room to take a peek at “the 25 weeker who looked amazing”.  Finn will see Urology again in December to re-evaluate his kidney reflux, until then he continues on prophylactic Bactrim daily in hopes of preventing further UTIs.

Finn is a smiley guy.  He laughs at everything his brother does, which only eggs Dermot on more.  Dermot is more interested in Finn now because he is more independent, moves around more and is an easy audience.  I’ll just stand in the doorway sometimes and watch them play.  It’s times like this that warm my heart and then also cause me to think “there should be three of them playing”.  Then there are times when Kevin is playing with the boys and says “who are my favorite guys?” and Dermot recently yelled out “Emmet!”.  Kevin and I just looked at each other and our hearts sank.

I guess that is my transition to writing about Emmet.  I find that people do not like to talk about grief and for that reason I am going to write about it here.  We cannot believe that it has been one year since we held our son and said goodbye to him.  Early on during Finn’s NICU stay I would sit in a chair next to his isolette for hours each day and look things up online.  I looked up phrases like “loss mom”, “twinless twin”, “TTTS Survivor” and I started to formulate a list of things that I wanted to do to honor Emmet.  It was a list that I would look at from time to time and think that when I did these things I would feel better — but I just couldn’t bring myself to do them.  Not then anyways.  Not when we were unsure if Finn was coming home or not.  Then one week turned into a month, then four months.  We went through the motions of being NICU parents and I still remember saying, “Why can’t we be just NICU parents or just grieving parents? Why do we have to be both?”

Then, after 122 days, we were home.  The four of us, not the five of us like we were supposed to be.  And that’s when it hit.  It hit hard and fast.  Grief.  Delayed grief.  Not to say we didn’t grieve in the NICU, because of course we did.  We had our son cremated and we sat across a table from NICU staff and reviewed his autopsy.  Each and every day we had to walk by many rooms of twins to get to Finn’s room.  Each day I saw “O’Brien 2” on his door, his chart, the milk I pumped and brought in.  Every little thing was a reminder of what we had lost.  I cried; I could cry at the drop of a hat for no good reason.  I cried on my rides into the hospital and in the shower — those were my go to spots.  But I didn’t truly let myself feel, let myself sit with it.  I knew I had to face my grief head on, but I couldn’t.  I had sat across from people as a social worker and helped them do it, so why couldn’t I?

The months following Finn’s discharge didn’t see us slowing down at all from the chaotic NICU life.  He had so many doctors appointments, we were adjusting to having him home while being exhausted and emotionally drained from the past four months and it was the hectic time of the holidays.  We stayed home on Christmas because so many family members were sick.  We included Emmet in our celebration by having his name on ornaments on our tree, one I purchased and two that were so kindly gifted to us by friends.  People remembering him, including him and speaking his name was something that we found to be helpful.  Before we knew it it was February and Finn’s appointments slowed down, we were sleeping a bit more and spring (the hope of nice weather and less germs) was not that far off.

I took out my list that I had made in the NICU and looked at it.  The only thing on it that I had completed was to become a milk donor in Emmet’s memory.  To date, I have donated 1,155 ounces of breast milk to babies in need.  Other things on my list included: having jewelry made with his cremation ash, making and ordering a book of the pictures that the NICU staff took of our time with him, ordering a weighted teddy bear, getting floating lanterns to have on hand when we want to do something in his memory, and finding a book about him for Dermot and Finn.  That’s when it hit me.  Before I could complete these physical acts, I needed to start to take care of myself emotionally.

I reached out to the social worker from the NICU and asked for the name of a therapist who had experience with what I was going through.  She recommended someone and I reached out for an appointment.  I brought Finn with me to these appointments because I couldn’t leave him — God forbid something happen and I wasn’t there.  Nope, not going to happen.  I took the time to talk about my feelings, my irrational (my label, not hers) thoughts and to sit with my grief.  I set goals for myself of doing things off of my “Emmet List,” as I called it.  This was a place where I could speak and not have someone try to “fix me”.

Kevin was very supportive, listened, cried with me but then as my husband and partner wanted to be my protector and wanted to make things… I won’t say better, because our son was dead and things couldn’t be better, but easier to live with.  Just as many well meaning family members and friends would do as well.  I realized that I had spent my life fixing (or trying to fix) things for other people, being the one to reach out to help others, or offering solutions to make things easier, and now I didn’t know how to help myself.  It was because I didn’t give myself the space or time to sit with my grief.  To name it, to own it, to feel it.

I went to therapy for about three months.  My intended purpose was to get support with getting through my list and getting up the courage to have a memorial for our son because a memorial, to me, was an acknowledgement that things were permanent.  That he was gone forever.  I slowly checked things off of my list: found an incredible woman to order jewelry through, ordered the bear (although there is an extremely long wait time for it to arrive), and made my books.  Finn has a book in his room called “The Story of My Twin: Emmet Michael O’Brien” and Dermot has a book about his brother as well.

On May 13th, after the March for Babies, we held a small memorial at our house to honor Emmet’s life.  It seemed fitting to have it after the walk and during Mother’s Day weekend.  We displayed all of his belongings from the NICU that the staff stored in a memory box for us, including photos, his footprints, hospital bracelets, a hat and other important items.  We displayed his picture for our families to view along with other items that we had made in his memory.  We had people sign the book that we made of the pictures from the hospital.  Kevin and I each read a poem/verse, we played music and did a balloon release (please note that I had wanted to do a lantern release but realized we had too many trees in our yard and we could have started a fire).  Dermot still talks about “sending balloons to Baby Emmet” and it brings a smile to my face.  The following week I felt a weight lifted off of my shoulders.  We had shared with our family and friends the story of Emmet’s life.  We let people into our grief, our journey and showed them how proud we were of our son.  It was helpful.  It was healing.  I felt a sense of relief.

Then July came.  And bam: constant reminders, anniversaries and waves of sadness.  July 13th, 2016 was when I was diagnosed with TTTS.  July 19th, I was rushed to the hospital.  July 22nd, my water broke.  July 23rd, our twins were born.  July 24th, Emmet died.  Just recently, on the night of the 22nd, I went to bed and I woke up during the night because I just kept seeing Dr. Richardson coming into my hospital room the morning of the 23rd and saying, “We’ve been watching the babies all night on the monitor.  Something’s changed.  Something is happening to Baby A’s heart.  We need to get him out now.” She looked at me and saw the terror on my face.  She hugged me, put her hand on my cheek and said, “We think Baby B will be just fine.  I’m sorry this is happening.”  She was right: Baby B is Finn.  He is just fine — in fact, he is amazing.  Baby A is our sweet angel baby Emmet, who had a heart attack and a massive brain bleed.

So while the past few weeks have been very emotional, I am considering them a speed bump in my journey, meaning that I am taking the time to slow down, to acknowledge these dates and feelings.  I am taking the time to actually write them down here like I have been planning in my head for weeks now.  I have made a choice to allow joy into my life.  Yes, it is a choice.  It is a choice to be able to smile and be happy and not allow the guilt to overtake you.  The guilt that you’re happy when your baby is not here and cannot be happy themselves.  The guilt of taking so much pride in your living sons when one is dead.  It is a choice to also allow yourself the moments of sadness, but not to let them consume you.  I choose to acknowledge when something makes me sad, to take a minute and let myself feel that, and then to carry forward.  I choose to not walk on eggshells around others for fear that my sadness will make them uncomfortable.  Looking back at our NICU time and the few months post discharge, I now acknowledge that I didn’t let myself do these things.  I didn’t know how.  I would push things down and say, “You have to go feed Finn, stop crying” or “Dermot needs you, don’t be sad right now.”  This is not healthy and I choose to no longer live like that.

Why do I share all of this with you?  (And if you are still reading, you are a kind and patient person!)  I share it because I want people to know that you don’t just “get over it”, you don’t just wake up one day and feel okay.  I want people to know that there are right and wrong things to do or say to someone who is grieving.

Do not tell someone:

• “Things happen for a reason!” – this is bullshit.  Nobody wants to hear this.
• “It was God’s plan.” –  I don’t care how religious you are.  The thought of someone, especially God, willing or planning to take your child’s life… how is that comforting to anyone?
• “At least you have…” (insert anything from other children, their twin, the ability to have more kids, etc.).
• “But…”  Anything you say after “but” doesn’t matter.  And I think that was just referenced in Game of Thrones as well, so it must be true!  See, I haven’t lost my sense of humor.

Things that are helpful:

• Talk about the deceased child by name.  I didn’t forget Emmet’s name when he died.  Don’t be afraid to say it to me.  And no, you aren’t making me sad by saying it.
• Acknowledge that you don’t know what to say!  That is okay.  Telling someone “I cannot begin to imagine what you are going through and I’m not going to pretend to know, but I am here with you” is a powerful statement.
• Sit and listen.  You don’t need to say anything to fix my problems.  Nothing is bringing him back.  Just sit and listen to our stories, and cry with us.
• DO SOMETHING – do anything.  Don’t say, “Let me know what you need.”  Just do it.  Someone doesn’t know what they need.  They are in survival mode.  They need to come home to a hot meal that was delivered, they need to receive a card on a random day, they need someone to show up and give them a hug, they need someone to call, go by and cut their lawn, anything.  Do something, not nothing.

I was fortunate to have people in my life that did these things.  Family and friends that traveled to come home to check on us, that showed up at the hospital to drop off care packages, that came and babysat, that sent text messages even when they thought I wouldn’t return them, that sent us meals, gift certificates for takeout or cards.  We still have people that remember this time with us and recently we received thoughtful cards and flowers from friends and a special gift from my sister representing the five of us.  We are forever grateful for these gestures.

As the boys’ birthday approached this year, I was truly dreading it.  I wanted the weekend to be over, but acknowledged that Finn deserved to be celebrated, Emmet deserved to be remembered and we, as a family, needed to do this to continue to heal.   I started to think about ways to incorporate Emmet into their upcoming party.  My creative sister is going to make a Lego Emmet to go on the cake, just like the one that was taped to Finns isolette and then in his crib for his whole NICU stay.  Just like the one that now sits in the shadow box in Finn’s room.  We also decided that their actual birthday would be a fun day of family time, playing, eating good food and celebrating.  We went to the park, played outside, went out to dinner and ended the night by singing “Happy Birthday, Finn and Emmet”.  Just the five of us: four here on earth and one in spirit.  Dermot might have watched the movie “Sing” too many times and sang “Happy birthday, Dear Grandpa” like Meena’s family does, but we corrected him and tried a second time.  We also decided that Emmet’s “angelversary” would be spent doing something good in his name.  This year we visited the NICU, and we brought some snacks and coffee for the current NICU families, and some sweet treats for the amazing staff.  As difficult as it was to be there, it was amazing to see Finn smiling and laughing with his nurses, NPs and doctors and to feel close to the one place that Emmet lived.

I leave you with this.  You don’t fix grief.  You don’t get over it.  You weave it into your life.  You carry it with you.  You learn to live and love in a new way.

Happy birthday, Finn and Emmet!  And uappy early birthday to our wild almost 3 year old, Dermot!  Mom & Dad love you all so much.

First off, we wanted to say thank you again to everyone who sent food, gifts and well wishes while Finn was in the NICU.  Your thoughtful gestures were so appreciated.

We apologize that we have not posted since we updated you all in November that Finn had come home.  To be honest, we always had good intentions of writing an update… and then life happened.  Life at home has been very hectic, especially the first month out of the hospital with all of Finn’s appointments with specialists at Children’s Hospital.  Then we would sit down with ideas to post after Dermot was in bed and in between feeding Finn… and we would fall asleep on the couch.  So here it is.

I think it is easiest to give a summary of our appointments and the progress he has made:

• Cardiology: We saw them in December.  Finn’s EKG was normal and he was such a good sport during it.  So many little stickers on a tiny chest!  His patent ductus arteriosus (PDA) and patent foramen ovale (PFO) are still considered trivial and nothing that would require treatment right now (in fact, the PFO has always been trivial, and may not have been something we even mentioned here).  The cardiologist instructed us that we could return when Finn is 3 or 4 years old.  We asked if there was a clinical significance to that age.  She responded, “They’re more cooperative for an echo. Try doing an echo on a 2 year old!”  We’ll take it!
• Opthomology: We had three follow-up eye appointments post discharge (all 2-3 weeks apart) to monitor Finn’s retinopathy of prematurity (ROP).  The retinopothy was slowly resolving with each successive visit.  At our last appointment in January, we were told that Finn was in the clear and that we could return for an eye exam around his 1st birthday! The doctor warned that preemies are at higher risks for lazy eyes, cross eyes and other issues like that.
• Orthopedics: We saw ortho because of a “butterfly vertebrae” that Finn has.  Had he not been a preemie, in the NICU for so long and had so many ultrasounds/scans to monitor other issues, we probably would have never known that he had this issue; plenty of people probably have this, the doctor said, and just don’t know it. Ortho said he looked great and that the butterfly vertebrae would not be an issue for him physically or developmentally.
• Pulmonary: Finn is still on the QVAR inhaler that he started with in the NICU (as a taper to the steroids he had been on).  We have seen the pumonologist a few times since discharge, and each time Finn’s oxygen saturation level is 99-100% and he has no difficulty breathing.  We have been given the okay to taper his inhaler in March… once we are out of the worst of the cough and cold season.
• Infant Follow Up Program: This is a clinic at Children’s staffed by NICU doctors, psychologists, physical therapists, social workers and more. Finn saw the doctor that took care of him during the first week of his life and he thought that he looked great.  He also passed his physical therapy evaluation. We just have to keep up the tummy time. We will return in July for a developmental assessment. 
• Early Intervention: They come to the house every other week at this point and it will probably be more frequent as he grows. The Developmental Specialist thinks he is doing well. Dermot enjoys her visits and we think has a crush… he came into the family room one day playing his guitar and batting his long eye lashes at her.  He even gives her hugs when she leaves.

Finn’s biggest battles right now are kidney reflux and weight gain/feeding:

• Urology: About 10 days after we got home from the NICU, Finn spiked a high fever overnight.  We rushed him to Children’s Hospital.  After some labs were drawn and a urine sample was collected, the doctor and nurses determined that he had a urinary tract infection (UTI).  They gave him an injection of an antibiotic and then put him on oral antibiotics for 10 days.  They also scheduled us a follow up with Urology to determine the cause.  When you have a fever with a UTI, it means that it has reached your kidneys and is not just in the bladder. At the end of December, Finn had a VCUG (voiding cystourethrogram), which means that they catheterized him and used dye to monitor how his kidneys and bladder emptied.  This was awful to watch.  Kevin and I were at the head of the x-ray table helping to hold him still, hold his arms out of the way, keep his pacifier in and give him drops of sugar water.  All the sugar water in the world would not have helped him during this.  This showed that he has grade 1-2 kidney reflux (grade 5 being the worst), meaning that urine doesn’t completely empty out when Finn pees, but rather some of it goes back up into the kidneys.  This can continue to cause UTIs, and repeat UTIs can lead to kidney scarring.  Treatment for this is daily low dose antibiotics to prevent infection.  Finn will have the VCUG repeated annually, and we were told that 80% to 90% of children outgrow this on their own by age 5.  In the meantime, if in the future Finn spikes a fever, he will have to be catheterized to collect a sterile urine sample to rule out another UTI. Additionally, he was not circumcised in the NICU due to some adema.  He was too big by the time we saw Urology in December to have the procedure in the outpatient clinic and will have surgery in the spring (as they want you to ideally be six months corrected age to get anesthesia).
• Nutrition:  This is what kept Finn in the NICU for a few extra days, and it continues to be an uphill battle.  He was slow to gain weight, wasn’t reaching his daily minimum volume and started to have bad reflux before discharge.  He continues to take Prilosec for the reflux.  We are in regular contact with the Nutrition Department at Children’s and work closely with our pediatrician and the visiting nurse to monitor his weight.  Frequently Finn will be hungry and will voraciously suck down 1 to 2 ounces — but we think that often takes the edge off enough to take the hunger pain away, and then he fights us to take any more, but he does it while pushing the bottle away and smiling at you!  Most of his feeds are a battle and result in us doing everything except standing on our heads to get him to eat!  We spend a good chunk of the time walking around while feeding him because that seems to get him to eat a little bit more.  He is not a fan of eating directly from the source and is getting expressed breast milk  with extra calories added into it.  And yes, we’ve tried feeding him closer together with smaller amounts, we’ve tried letting him have more time between feeds to hopefully take larger amounts, we constantly give him “chin support,” we rub his cheek, we make sure to keep the bottles warm– you name it, we’ve probably tried it.  For Finn, there is no perfect solution.  He is the boss, and we do our best.  Today at the pediatrician he tipped the scales at 11 pounds, 8.5 ounces.  His weight gain is averaging about 20 grams per day, which all of his providers are happy with (since it’s within the acceptable 20 to 30 grams per day range) so long as he keeps trending up on the growth curve.  On the plus side, his spits have gone from multiple times per day to just a few spits per week. 

That’s a pretty comprehensive medical overview of the past two-and-a-half months.  Outside of doctors appointments, we have been doing our best to avoid germs!  We spent the holidays at home because everyone around us was sick.  We had relatives with stomach bugs, fevers, strep and pneumonia the week before and after Christmas.  We stayed put and kept everyone away.  We are glad that Dermot is young enough to not realize that he missed out on the fun.  We have really been living in a bubble for the most part.  On days where it is above freezing, we get out and enjoy outdoor activities (the park, the zoo, going for walks), but really our goal is to avoid all the nasty germs out there like RSV, flu and the stomach bug that is spreading like wild fire.  So we apologize for being hermits, but it’s what we have needed to do.

On January 23, 2017, Finn turned six months old.  This also means that January 24 marked six months without Emmet.  As I reflected on the last six months, our NICU journey, the holidays and a new calendar year, it struck me that I had been dreading the holidays and looking forward to 2016 being over.  It was, after all, the worst year of our lives.  Then, as New Years came and went, it hit me that I didn’t want 2016 to end.  2016 would be the only year in our lives that we would physically get to be with Emmet — the only time we would be able to hold him, kiss him, and talk to him in person.  It would be the only time that our twins would physically be in the same room.  It would be the only time he physically lived on this earth.  Then there was Finn, who we spent 122 days visiting in the NICU for hours on end every single day.  That’s four months that we spent with nurses, doctors, respiratory therapists, social workers, administrative staff and everyone else who helps the NICU save lives.  These are the people who became our family and the people who we trusted with Finn’s care (we joked that they were the most expensive and highly trained babysitters he would ever have!).  As happy as we were to be home and move forward with our lives, it was scary, it was weird and it was, at times, a difficult adjustment without them.

We have gone back to visit the NICU a couple of times now since discharge when we are around the corner at Children’s for appointments.  We were actually there on Emmet’s six month anniversary on January 24.  I was hesitant to go there that day, and I thought it would be too hard and too painful to be where he died.  But then I took a step back and thought that it would be comforting to go and see the people who had the honor of knowing Emmet, who took care of me and Kevin during Emmet’s short life, who helped us say goodbye to our son with love and dignity and who worked tirelessly to give Finn a fighting start to his life.  So we went that day and it was a nice visit. Finn wore a onesie that said “Handsome” and wooed the ladies with his smiling and cooing. 

Lastly, just recently Dermot asked to hold Finn!  It was the first time in two months that he showed a real interest in him.  It’s taken some time, but he now enjoys interacting with his brother and actually initiates it on his own from time to time.  It’s difficult to watch the two of them without thinking that we should have three sons playing together. We try to remind ourselves that Emmet is watching over his brothers, is a part of the bond that they share and will always be with us. 

Finn is 124 days old today, was exactly 4 months old yesterday, and most importantly, he came home 2 days ago.

A couple of days later, it still feels surreal. In some ways, we’re like first time parents all over again, nervously watching our baby every second, constantly wondering if he’s eating enough, spitting too much, and sleeping the right amount.

On the other hand, this is untrodden territory for all of us — Shannon, Dermot, Finn and me. Finn has already been here for 4 months, and we’ve sat by his isolette/crib every day hoping that his lungs would someday be strong enough not to have to rely on a ventilator, that he wouldn’t need surgery on his heart, that he would show no long-term effects from the small amount of bleeding in his brain from when he was born, and seemingly countless other things. The transition to worrying about “normal” newborn stuff now is a weird one, to say the least.

Finn’s actual graduation from the NICU was, in the end, pretty anticlimactic. He passed his car seat test last Tuesday, November 15, and was actually for a time on track to come home last Friday, November 18. The NICU team wound up keeping him for a few extra days when he kept spitting up, and after adding a dose of Prilosec to Finn’s daily routine helped to cut down on the spitting, Finn was deemed good to go.

That today was Thanksgiving, and that Finn made it home in time for the holiday that we’d been so hopefully eyeing since back in July, was not lost on us. On this, Finn’s first Thanksgiving, we have so much to be thankful for.

Of course, Finn’s graduation is bittersweet. We’ll very much miss the doctors, nurse practitioners, nurses, respiratory therapists and other supporting players who quite literally saved Finn’s life. These people have spent more time with Finn than anyone but his parents (in some cases, maybe more time than his parents), and they very much feel like family to us now.

And, of course, Finn coming home is a painful reminder that his brother Emmet never will. It’s probably unfair to Finn that every milestone he achieves will, at least for a little while, be tempered by the realization that his identical twin brother isn’t here to share in that experience; it’s something we’ll have to deal with as a family, and hopefully as time passes, we’ll learn the best way to balance celebrating Finn and remembering Emmet.

For now, we’ll just take things one day at a time. After just a day shy of four months in the NICU, Finn came home, and we’re not sure there’s a family out there that has more to be thankful for this Thanksgiving than we do.

Finn’s last NICU milestone was:

• On Tuesday, November 22, Finn graduated from the NICU.

Finn is 114 days old today.

Over the last couple of weeks, he’s slowly been increasing his bottle-feeding, briefly gone back on and then come back off extra oxygen, and continued to pack on the pounds (well, ounces). Finn’s now 8 pounds, 5 ounces, 19 and 3/4 inches long, and in a development just today, is trying life without his feeding tube!

He’s now gone from noon yesterday, November 13, through 3:00 p.m. today having basically taken full feedings (61 mL, or about two ounces) by bottle every three hours. His nurses switched him from preemie nipples to regular newborn slow flow nipples back on Monday, November 7, and it seems to have done the trick; Finn’s not having to work as hard as he was, and the volume that he’s been able to handle orally has steadily risen since then.  He’s still spitting a few times a day — he threw up so forcefully on one of his nurses the other day that she had to change her whole outfit! — but is continuing to gain weight despite all the extra energy it takes to eat on his own. As we mentioned in the last couple of posts, this has been the biggest obstacle to Finn coming home with us, so the fact that he’s made such great strides over the past few days is very encouraging. He has to keep this up for at least a few days, show that he’s continuing to gain weight, and pass his car seat test (i.e., sit in his car seat without having a spell for an hour-and-a-half) before we can talk about discharge, but it’s starting to become apparent that we’re not that far off.

Finn passed 40 weeks in gestational age a week-and-a-half ago, and is 41 weeks, 4 days today. And he continues to do full-term baby type stuff — tummy time, spending time in his swing, and sitting up to read books with Dad. On Thursday, November 3, the nurses let Mom unhook Finn from his wires and go for a walk down the hall — and when your baby has been confined to just four rooms in his entire life, a 100-foot walk to the nurse practitioner’s office feels better than any trip you’ve ever taken.

Aside from that… there isn’t a whole lot new to report. Finn’s last eye exam, on Thursday, November 3, showed improvement (in his right eye in particular) to the point where they aren’t repeating an exam until later this week because the ophthalmologist isn’t really concerned. He continues to get puffs twice daily from his inhaler to help his breathing, and he’s otherwise just taking some extra iron and a daily multivitamin.

It’s an old analogy, sure, but seems accurate here: while the tunnel’s been long and, at times, very dark, it’s suddenly looking a whole lot brighter in here.

Finn’s recent milestones include:

• On Thursday, November 3, Finn took a break from his monitors and went on his first walk with Mom.
• On Tuesday, November 8, Finn crossed the 8-pound mark.

Finn is 100 days old today, and is just 3 days short of being 40 weeks gestational age.

We know there are a lot of people reading the blog, and we apologize for the infrequent updates recently — but the truth is, there isn’t a whole lot new to report. Where the beginning of Finn’s NICU stay was marked by respiratory support, head ultrasounds, heart echoes, blood transfusions,  steroid courses, etc., his “feeding and growing” stage has been reliably… well, uneventful. It’s frustrating in some ways, given that Finn has made so much progress toward coming home but is, like most micro preemies, finding the last hurdles the most difficult to overcome — but of course, after all that he’s been through, “uneventful” is far from a bad thing.

Finn’s biggest news of the last two weeks is a development that’s happened just today: he’s been in a trial off of his extra oxygen since 3:00 a.m. this morning, and as of tonight, he’s still making do without it.  We’re keeping our fingers crossed that this is a permanent development, but even if it isn’t, we know he’s not far off, as the amount of extra oxygen he’s needed has been steadily decreasing over the past couple of weeks.  On Monday, October 24, he finished the last of his tapering dose of prednisolone, and now just gets puffs from his inhaler twice daily.

That leaves (for now at least) just the leads measuring Finn’s heart rate and breathing rate, his pulse oximetry sensor measuring his oxygen saturation level, and his feeding tube as the “extra wires” that Finn is sporting.  Combine that with his continued growth and his improved color — his hematocrit, when measured on Thursday, October 27, was up, so no more worries about a pale baby needing a blood transfusion! — and Finn looks more and more like a healthy full-term baby.

The only negative over the past couple of weeks is that Finn’s eye exam on Thursday, October 27, showed a slight worsening in his right eye. While it seemed that we were over the hump and that his eyes would only get better from here on out, the nurse practitioner assured us that if the opthamologist was really worried, they would have scheduled a follow up for a few days later (and not a full week). So we will get an update this Thursday and are keeping our fingers crossed.

Finn is now just shy of 18 inches long and tipped the scales at 7 pounds, 8 ounces tonight — exactly five times his original birth weight.  He’s packing on the pounds despite having bouts of reflux recently that have led to him spitting up at least once or twice per day, though the spitting isn’t unexpected for a newborn (and particularly a newborn on a feeding tube). Finn is doing his best to eat on his own, but is generally taking about half of a bottle every other feed and getting the remainder, including every other full feeding, through his tube. He’s done a pretty good job breastfeeding and is even starting to do back-to-back feedings with bottles at times, but in both cases, only when he has the energy to do so.

It’s probably going to be at least a few weeks before Finn reliably has the energy to eat entirely on his own, without the help of the feeding tube, and this is now his biggest remaining hurdle to coming home.  It will be difficult for us to see their due date come and go this Thursday with him still in the hospital, but we had prepared ourselves for this from the beginning, and we’re still hopeful that our original goal of having Finn home by Thanksgiving is a realistic one.

In the meantime, Finn “celebrated” his first big holiday in the NICU: Halloween! He had two costumes, and of course, Mom and Dad subjected him to photo shoots in both of them: a skeleton costume, and a Star Wars stormtrooper outfit that read “Storm Pooper” and complemented Dermot’s Yoda costume (and his cousins’ Leia, Darth Vader and Amidala costumes). We promise that photo evidence will be available in time.

Finn’s milestones over the past couple of weeks include:

• On Monday, October 24, Finn weighed in at exactly 7 pounds.
• On Monday, October 31, Finn weighed in at 7 pounds, 8 ounces — five times his birth weight.
• On Monday, October 31, Finn started a trial off of the nasal cannula that had been giving him extra oxygen.

Finn is 88 days old today.

The name of the game these days is “feeding and growing.” He’s doing the latter part quite well, crossing the 6-pound mark a week ago on Wednesday, October 12 — which means he’s quadrupled his birth weight.  The former is happening in fits and starts, however, as Finn continues to try to build stamina to eventually take over all of his feeding on his own.

Finn has “care times” every three hours, where Mom and Dad or the nurses (if we aren’t here) change his diaper, take his temperature, and get him breast milk. Every other care time, or once every six hours, we’ll try to either bottle-feed or breastfeed him.  Finn has thus far taken four full bottles — full being a moving target as his weight goes up, so 49 mL as of today — and the rest of the time, he tends to take down half to two-thirds of the bottle.  Breastfeeding has been sort of hit or miss; it often takes him a little while to get going, but when he has the stamina, he’ll breastfeed for between 5 and 15 minutes. What Finn doesn’t take by mouth gets delivered straight to his stomach via his feeding tube.

For Finn to graduate from the NICU, he’ll need to be able to eat by mouth entirely on his own — full feedings, and at every care time (not just every other).  It means that our little guy has some hard work ahead of him, and we’re hoping for a mid-November graduation at this stage.

While he may be here for another month or so, that didn’t stop one of Finn’s NICU nurses from giving Mom and Dad the discharge planning packet back on October 12… because everything else is going pretty well!  Most babies typically get their discharge planning packets at 34 weeks, and while Finn was almost 37 weeks when he got his, we’re still incredibly proud of him given all that he’s overcome.  He’s continued with his weekly eye exams (where no news is good news), is weaning off of his prednisolone and onto a twice-a-day inhaler that he can take home with him, and is still on just a bit of extra oxygen. They’re also continuing to monitor his hematocrit (it will get checked again next week) and we are hoping he can avoid a seventh blood transfusion.

And of course, Finn is continuing to plump up.  He was measured at 17.5 inches long on Sunday, October 16, and weighed in at 6 pounds, 9 ounces last night, Tuesday, October 18. Looking at him now, it’s incredible to think how tiny and skinny he was 12 weeks ago.

Finn’s recent milestones include:

• On Wednesday, October 12, Finn weighed in at 6 pounds, 1 ounce — more than quadruple his birth weight.
• On Wednesday, October 12, Finn’s Mom and Dad received his discharge planning packet.

Finn is 78 days old today.

On Tuesday, October 4, Finn moved rooms for the first time since he was less than a day old. The NICU babies that need respiratory support are all clustered in rooms in the back of the unit, so Finn had been in that neck of the woods for the first 10+ weeks of his life. But having been off of CPAP for over two weeks, and having completed his second course of steroids without experiencing a significant rebound, Finn was sent packing down the hallway. He’s now moved on up (to the east side of the building… seriously!) and is, quite literally, closer to the door.

As Finn chugs right along toward full term gestational age (he’s now 36 weeks, 3 days), we’ve started moving down the checklist of things he’ll need to do before he’s allowed to bust out of this joint. Between Tuesday, October 4 and Wednesday, October 5, he got his vaccinations, took his hearing test (he passed!), and had his sixth weekly eye exam (which showed about the same results as the week before). While his hematocrit levels are still a bit on the low side, there are no imminent plans for a blood transfusion, as it seems likely Finn’s bone marrow just needs a bit of time to make more red blood cells — and they’re trying to help that process along by maxing out his iron supplement.

On Thursday, October 6, Finn had a follow up echo on his heart. The headline coming out of it is that Finn showed no signs of hypertension, which is always a concern for micro preemies given that they are born with chronic lung disease. The echo also showed that Finn’s PDA — for those of you keeping score at home, that’s the open duct in his heart that we haven’t talked about since mid-August — is still there but is very tiny, and is still expected to close on its own.

Finn checked in last night just shy of 5 pounds, 9 ounces; his weight has been up and down the last few days, as the doctors, nurses and nutritionists here in the NICU try to determine the right balance of volume and added calories to keep Finn within the bounds of the preferred growth curve for micro preemies.

The main task before Finn now is a simple, if still difficult, one: keep progressing with his feeds to the point where he no longer needs his feeding tube. It’s been slow going given the limited stamina that Finn has. For instance, on Thursday, October 6, Finn took a full 42 mL bottle, but the next day, he struggled to take down half that amount before losing his lunch all over Dad. He’s been equally up and down with breastfeeding, tending to be more awake and willing to nurse at night, but wanting to sleep instead of working to eat during the day.  This has led to Mom frequently coming back in at night to breastfeed Finn (showing some pretty incredible stamina of her own, given everything that’s going on).

Finn’s recent milestones include:

• On Tuesday, October 4, Finn moved down the hall (and closer to the door!).
• On Thursday, October 6, Finn finished his first full bottle.
• On Saturday, October 8, under the watchtful eye of his older brother Dermot, Finn had his first bath (and he loved it!).

Finn is 10 weeks old today.

One of the themes of an extended NICU stay for a micro preemie is the slow but (hopefully) steady progress toward doing, on their own, all of the “normal stuff” you take for granted with a full term baby — stuff like breathing, producing their own blood, eating, etc.

If we’re running down that list for Finn, we can now put a check mark next to breathing on his own (having graduated both from the ventilator and the CPAP machine), albeit with a bit of oxygen, and producing sufficient levels of red blood cells for himself (after six blood transfusions). And in the past week-and-a-half, Finn has started to take on one of his toughest tasks yet: eating on his own.

Last Thursday, September 22, Finn breastfed for the first time. He’s breastfed once per day since then, and it’s going well!  One of the doctors said to Mom in the hall, “I heard Finn is breastfeeding like a champ!” — so we’ll take that as a good sign.

Then, on Wednesday, September 28, Finn had his first bottle from Dad. Just like breastfeeding, he’s bottle-fed once per day since then. He hasn’t yet been able to get a full 39 mL feeding through breastfeeding or bottle-feeding, though he did take down a healthy 35 or so mL when Dad gave him his bottle on Thursday, September 29. Most importantly, though, he figured out the “suck-swallow-breathe” dilemma very quickly, and so now it’s just a matter of building his stamina so he can breastfeed and bottle-feed more and more (and rely on his feeding tube less and less).

Meanwhile, Finn is still chugging right along in his CPAP-free world, and remains on just a bit of extra oxygen. He completed his 22-day course of steroids (hydrocortisone) on Thursday, September 29, and now we’re just keeping our fingers crossed that we don’t see a significant rebound. Two factors make us hopeful that he’s going to stay the course: (1) he gets a small dose of prednisolone, itself a steroid, every other day to try to help him maintain; and (2) he really, truly is getting bigger and stronger every day. On Tuesday, September 26, Finn weighed in at 4 pounds, 8 ounces — triple his original birth weight. As of tonight, October 1, Finn tipped the scales at 5 pounds, 1 ounce.

Finn is now 35 weeks, 2 days gestational age, and when he hit the 35-week mark a couple of days ago, a few things changed. He now has to sleep in his crib without the use of “barriers” (little body pillows and other items that had previously helped to cocoon him); he’s no longer allowed to lay on his stomach; and he’s expected to keep higher oxygen saturation levels (so his vitals monitor has been set to ding accordingly). The reason for all of this? Finn won’t have barriers, lay on his stomach, or be on a vitals monitor when he comes home, so he needs to start getting adjusted.

We haven’t officially begun discharge planning yet, but the fact that we’re making those post-35-week changes, talking to the nurses about the vaccinations Finn will need before he leaves the NICU, and being asked to schedule the mandatory parental CPR class — these are all good signs. One of Finn’s primary nurses said the other day that a late October graduation is certainly a possibility, so while we’re trying to temper our expectations, we can finally safely say that we are closer to the end of Finn’s NICU journey than the beginning.

Finn’s milestones over the past week-and-a-half include:

• On Thursday, September 22, Finn breastfed for the first time.
• On Monday, September 26, Finn weighed in at 4 pounds, 8 ounces — triple his birth weight.
• On Wednesday, September 28, Finn took a bottle for the first time.
• On Saturday, October 1, Finn crossed the 5 pound mark, tipping the scales at 5 pounds, 1 ounce.

Finn is 60 days old today, and will be 34 weeks gestational age tomorrow.

It’s been an eventful past week-and-a-half for our (no longer quite so) little guy. On Monday, September 12, Finn switched from the Hudson prong CPAP to the far less bulky RAM CPAP — picture moving from a tube apparatus the size of a roll of Life Savers, attached to a skintight hat with safety pins and rubber bands, to just a small nasal cannula. Finn was still pulling at the RAM CPAP — this is, after all, the same baby who pulled out his breathing tube when he was a sub-two pound two-week old — but he seemed much more comfortable overall, and despite the slightly less steady flow of the new device, he saw no real drop off in his oxygenation levels. He even moved to a CPAP pressure of 5, the lowest level, on Friday, September 16.

But Finn wasn’t done there.  Mom and Dad arrived on Monday afternoon, September 19 to find that Finn was still on a nasal cannula, but this one looked a bit different… it was just providing oxygen. The CPAP machine was gone!  We’re now more than 48 hours into life without breathing assistance, and Finn seems to be coping just fine.  He’s undoubtedly being helped along by the tapering course of steroids he’s receiving, but he’s also getting bigger and stronger each day, which means his lungs are getting bigger and stronger too.

In addition to his hydrocortisone course and his normal cocktail of Vitamins D and E, Iron and Sodium, Finn is also currently in the midst of a 7-day course of antibiotics (oxacillin).  When Mom was in for a late night visit on Saturday, September 17, she and the nurse noticed that his left arm, from his upper arm down to and including his hand, looked red and swollen — when it had looked perfectly fine earlier that day during Mom, Dad and Dermot’s visit.  X-rays ruled out any sort of fracture, blood cultures came back negative, and an ultrasound showed just a small pocket of fluid on the back of his left hand.  It started to improve almost immediately, and the current antibiotics course is being seen out just in case this was some sort of cellulitis (which does seem unlikely).

That blip aside, it’s pretty routinely been steady progress for feisty Finn. On Sunday, September 18, he crossed the 4 pound threshold for the first time, and he weighed in last night at 4 pounds, 2 ounces. He’s hung out with his older brother Dermot three times now… well, if you can call Dermot only spending about 10 minutes in the room and otherwise rampaging through the NICU “hanging out”.  All in all, Finn still has a long way to go before he’ll be ready to come home — his due date of November 3 is the earliest he could conceivably graduate from the NICU — but he’s made an incredible amount of progress in his eight-and-a-half weeks, and we are so very proud of him.

Finn’s recent milestones include:

• On Monday, September 12, Finn switched from Hudson prong CPAP to RAM CPAP.
• On Friday, September 16, Finn reached 1 ounce per feeding for the first time.
• On Sunday, September 18, Finn tipped the scales at 4 pounds for the first time.
• On Monday, September 19, Finn graduated from his CPAP machine.