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. 

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 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!

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 9 days old and already has had more tests, procedures and medicines than some people will ever have in their lifetime.

He finished his treatment for his PDA (the open valve that is pushing too much blood into his lungs) yesterday, Sunday, July 31, at 6:00 am.  After some preliminary tests, they resumed his 1 mL feeds of breast milk.  Today he had another echo to check how he responded to the treatment.  The echo showed that the PDA is still there, but at least for the time being, it looks much smaller than last Friday.  The doctors have decided to hold off on any further treatment right now and will just continue to monitor him over the next few days.  The hope is that it continues to resolve on its own.  Otherwise, he can receive one more round of the medication, and if that doesn’t work and/or things get worse, the last option is surgery.  So now we wait.

Finn’s milestones over the past few days include:

• On Sunday, July 31, he had his first snuggle session with Dad.  A little skin to skin action and only a few of Kev’s chest hairs stuck to the tape from all of his wires!
• Dermot has been saying “Finn” for the past few days.

Lastly, we just wanted to share a quote that stood out to us:

Some twins walk side by side, and sometimes one has wings to fly.