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.