Angels and Ghosts of Salt Lake City
Breen was supposed to be born on May 20th, which would make him 6 months adjusted! That means that we should think of him as a 6-month old in terms of size, development, movement, smiles, and naps.
Breen is a delightful young man. He smiles and laughs easily. He thinks most things are hilarious, especially his sister. Nora squgs him (squish/hug), sometimes too hard. We often ask Nora: “Does Breeny seem like he likes that?” when she’s on the line. Often we ask this as Breen cries. Most of the time Nora stops right away.
The other day I was in the kitchen and I heard some hollow smacks coming from the living room. I raced around the corner as I sternly asked Nora: “Does Breeny seem like he is liking that!”. Then I get around the corner to find Nora two-hand smacking Breen’s tummy, making a drum sound. And Breen is laughing his head off with a smile from ear to ear. Nora answers: “Yes! He is liking this!”. To which… well… that was a tough one as a parent. I went with something lame like: “It’s not good to hit any living thing”, but there Breen was cackling as Nora searched for the line.
They’re probably gonna be fine. Best friends forever. (she mostly snuggles and kisses him)
On Wednesday night last week, Erin and I loaded up the car to the brim with Breeny gear (and Breeny) and drove down to SLC for our Thursday morning appointments back at Primary Children’s Hospital. When we arrived, we unloaded our car into a hotel room, set up a mock-NICU, and tried to get a bit of sleep before the big day.
We both remarked how grateful we were that it was dark when we drove down to SLC. Too dark to see those same mountains, those same swaths of road, those same exits, those same billboards that we saw every time we drove that stretch of I-15 back in the bad times. Back when we were living in hell.
Each time Erin or I drove that stretch, it was breaking up our family in order to tape it back together. Be with my son by leaving my wife and daughter. Be with my daughter by leaving my son. Back and forth, with Armstrongs strewn across Idaho and Utah.
This time both Erin and I leaving our daughter to bring our son upstream to the hospital that built him a life. Our wee salmon.
While we drove down, Grandpa and Nora had a sleepover at our place. Grandpa has been in Pocatello helping tremendously with our kids since Nonna left a few weeks back. “Tremendously” doesn’t cut it. “Infinitely”? “Massively”? It’s gargantuan.
The week before we left, we both felt haunted by the ghosts of that time. From February 8th to August 3rd, our son lived in an intensive care unit 150 miles away from our home. 176 days patched together with scotch tape and the love of three incredible grandparents (Nonna, Grandpa, and Grandma) giving their lives to Nora, our family, and our home. 176 days of sorrow and joy. 176 days of codes and surgeries. Picc lines and desats. Infections and illnesses. Concern and optimism. Ghosts and angels.
Those 176 days instilled a deep fear in Erin and I that our son could die at any moment. This constant fear rewired our brains. Anytime we got a call from Primary Children’s Hospital, our hearts stopped. Anytime we got a call from an 801 number, our hearts stopped. Hell, anytime we got a call from each other our hearts stopped. We had to establish a rule where you had to text “everything is fine, about to call”, so the other person didn’t panic when your name showed up on their phone. To this day, seeing my wife’s name on caller ID when she’s with Breen and I’m not elicits a cold feeling. We hope that eventually that reaction will wane, but it may take some time.
In a previous blog, I discussed Breen’s breathing equinox; the milestone of living as many days on earth breathing on his own as he had lived while intubated. That day came on October 11th, only six weeks ago. In a similar vein, Breen was hospitalized in the NICU for 261 days, and he’s been home for 38 days. Breen’s home-life equilibrium won’t be until July 3rd.
It puts this all in perspective. Our poor son has had to endure so much just for normalcy. He’s be 18 months old by the time he’s lived as many days under the same roof as his family as he spent in a hospital. Such an arduous journey.
Our appointments last Thursday were with Breen’s Pulmonologist, Neurologist, and Surgeon.
Erin and I were also glad that the first two appointments were at the Eccles outpatient center across the street from Primary Children’s Hospital. We were happy to avoid the haunted entrance to the haunted parking structure of the hospital. We welcomed this brand new entrance, brand new elevator, brand new ipod check-in questions, brand new hallways, and brand new colors, posters, and chairs.
The Surgery appointment, our third of the day, was back in the hospital. But for that one, we could use the skybridge that connected the two buildings.
The pulmonologist was so happy to see Breen, and took his picture to send to her neonatology colleagues across the street. She thought Breen was doing great, but was measured in her assessment. He still has such a long way to go before coming off O2. He’s currently somewhere between .4 and .5 liters, but there remains a massive gulf between “a little bit of oxygen” and “no oxygen”. Slow goes the wheel.
Erin fed Breen his bottle while we were with the pulmonologist, and she saw Breen cough and sputter in trying to drink it. She recommended that we start thickening his milk/formula again. It was a mild blow to us, as Breen normally does far better than he was for her! However, fast forward a few days, and thickening Breen’s bottles has been incredible for him. He’s regularly taking 1/3 or more of each of his feeds by mouth!!!
She also mentioned that the children’s hospital is overrun with RSV and other respiratory illnesses at the moment, which is causing them to postpone all scheduled surgeries. She once again imparted upon us how important it is to keep Breen healthy, and for us to continue to stay fairly isolated and safe.
The pulmonologist then listened to his breathing, and discussed his prognosis some more. She mentioned that his breaths were shallow, and not terribly efficient, but he’s breathing at a good rate, and keeping his O2 sats up. I asked if she could share her opinion on how well he’s doing, and she said something to effect of: He’s doing quite well for a baby who was borderline trach patient.
Borderline trach patient. That stung at first. But it’s the truth. I appreciated this framing as I reflected upon it later. Borderline trach patient. Yes, our son was a borderline trach patient. My goodness, he was a borderline lots-of-things patient. So many times he stayed away from tragedy. So many times, on a razor’s edge. Maybe it was the force of all the prayer that was offered to him that nudged him to the right side. Maybe it was one of Erin’s songs. Maybe it was one of his angel doctors, nurses, RTs, surgeons, or therapists who gave him the thread of strength he needed.
From pulmonology we were whisked away to neurology to see the great Dr. O, the neurologist who read Breen’s initial MRI scan all those months ago. That scan showed evidence of PVL, or a white matter injury in the brain. She assessed that the PVL was mild, and likely didn’t foretell a life of significant mental disability or cerebral palsy. (I still remember sometime in May, just before we got the MRI, when one of our NPs told us they had originally found evidence of Breen’s PVL back in February. I told her that nobody told us about that, and I am positive I would’ve remembered had they done so! When I asked her what PVL was, she said something like: oh don’t worry about it, it’s often referred to as “holes in the brain”. Then she paused, and said: “Don’t Google it”. Well dear reader, I googled it)
So you could imagine that we were anxious to meet up with Dr. O again, and receive her updated assessment of Breen.
We were whisked into another professional medical office, where we barely got settled before Dr. O with two other doctors in tow came in the room. The two assistant doctors got on a mat on the floor and asked for Breen. They did an assortment of physical and social assessments with him with Dr. O asked Erin and I questions.
Breen was in rare form. He was laughing, smiling, and kept a friendly disposition throughout the assessment. This was greatly aided by Erin, who was making googly faces at him the entire time!
The idea here, as I understand it, is that physical movement and ability is directly tied to neurological potential and outcomes. Is Breen able to do things as well a “normal” 6 month old baby can do?
By the end of it, Dr. O was astounded. She said: “He wins the prize for the best 23 weeker I’ve seen”.
Incredible. We have long said that therapy will be such an essential part of Breen’s journey, and Erin and I feel massively grateful to all the brilliant therapists who have come through his and our lives. They taught us so much about Breen, they crafted a map to our son. This win is theirs as much as it is ours.
Slap a fresh diaper on the wee one, grab the pulse oximeter, oxygen tank, feeding bag, diaper bag, coats, hats, etc and march out of there to meet the surgeon… at the hospital.
We made our way to the sky bridge. It was normal at first, but as we got closer to the hospital side, I swear I felt a chill. A shadow on the entrance to the hospital. The skybridge spits you out onto a 2nd floor landing that overlooks the hospital’s main entrance. The main entrance where Erin and I checked in hundreds of times. Those same ipads. Those same machines that print out a yellow visitor sticker for the day. Those same yellow visitor stickers that we got in the habit of preserving at the end of the day just in case we had to rush back to the hospital.
It was strange looking over it from this landing. Like an out of body experience floating above. Like if I squinted I could see the ghost-of-NICU-past version of Jon or Erin (never Jon and Erin) slumping into the hospital with a blank expression. Flicking through the ipad screening questions like we’re playing some kind of demented candy crush. Floating down the hallway and out of sight to go be with their sick boy in the box.
The surgeon was also happy to see us and our incredible boy. Like the pulmonologist, he was excited to see how much Breen had grown! Later, when I asked about short-gut, he said: “The proof is in the pudding” As in, that chunker over there doesn’t look like he’s having issues with nutrition absorption.
He examined the hernia, and confirmed that it would need to be surgically repaired. He wasn’t in too much of a hurry, and thought that we ought to wait until Breen has come down quite a bit on his O2 support. Breen will need to be under general anesthesia for this procedure, which means re-intubated, and the concern is still there that once intubated again, it could take some time for him to get re-extubated, and perhaps to a higher level of support than he is on now.
There is risk in waiting, namely that the hernia will get stuck. That is a low risk, but a significant one. Should it happen, we’d have to get to a surgeon within hours in order to not lose even more bowel.
All in all though, he was really impressed with Breen. He recommended that we come back sometime in the spring, perhaps even after school gets out in early to mid May for surgery.
After that, it was happy reunions with bevy of angels and heroes. Erin had been texting nurses, doctors, therapists, and RTs for weeks prior to our comeback. We got to see three dear primary nurses, T, K, and J. Bedside nurses who watched over our son with such love and care over our time there. One of them was a night nurse, who came especially off shift just to greet us. Another dear RT (who would often sing in harmony with Erin or I to wee Breen) also came off shift for fellowship and reunion.
We hung in the hallway outside the NICU to hug more RTs, more nurses, therapists, and another dear primary nurse. There was tears, there was pictures, there was squeals, there was hugs. Lots of auntie-angel-hero hugs. At one point the great Dr. L came out. The Dr. L who said yes. A hero of our family now and forever. The one who gave him another shot at life. The one who runs the NICU. She was so bright and friendly. So thrilled for him and for us. So casual. It was strange seeing a great hero so casual. We love and admire her.
Seeing those primary nurses was intense. Their faces were instant portals to some of the worst hours I’ve spent on planet earth. It’s always shocking how close those nadirs are, how easy they are to trigger, how easy it is to be transported. Yet at the same time, you could feel the radiating joy on their face holding our big boy in the present. The hope they gave us through their tenacity and brilliance in the past. Those incredible women who built our son hour by hour. Our heroes, our angels.
Three RTs came out as well. Three massively important RTs. The RT who accompanied him to reconnection surgery, a fantastically friendly guy who always made our day. The RT who extubated him, and also saved him from a particularly scary desat (and likely dozens of others like it), a strong and wonderful person. And the RT who ushered him through the worst of the pneumonia days, who guided him through his CPAP days, and was kind and patient in teaching Erin and I how all of the equipment worked.
Breen’s first PT was also there. An astounding woman who first gave us the confidence and wisdom to actually touch our son. Those first terrible weeks, we often heard something to the effect of: His skin is so thin and fragile that touch is agony for him. An awful thing to hear as a parent. PT D taught us how to touch, how to soothe, how to listen to our intuition. Then she led us along for months, giving us new technique as he grew. Giving us lessons on development. Building us a map to our son.
Breen’s tribe. His commune. His heroes. His family.
Breen was born on a full moon in January, and it was fitting that as we drove back to Pocatello, the November full moon rose over the mountains, guiding us home. His 11th full moon. I can’t help but think of that awful first night every time I see a full moon. I remember how much I rejoiced when he got to his 2nd full moon, his 3rd, his 4th… Days and moons feel like a more visceral clock for how we spend our time on earth. Months and weeks are ingrained, but days and moons…
Happy 11th moon Breen. We are all so proud of you.
Nora Poetry Corner:
Nora invented a poetry game on a car ride with me. Well, it’s more like a poetry recipe. It goes like this:
“If you were a (x), you would (y)”
Her first one was:
“Daddy, if you were a squirrel, you would climb that tree”
a few other golden ones:
“Daddy, if you were a cloud, you’d be in the bright blue sky”
“Daddy, if you were a deer, you would eat a pumpkin”
“Daddy, if you were a mountain, I would climb on you”
“Daddy, if you were an apple, I would eat you for lunch!”