And we’re back and its going to be a long one! After planning a first birthday party and having a very busy May and June I had some time to get back on track with Owen and Amelia’s NICU stories. We will actually be celebrating Owen’s coming home day on July 15 (today!). His story isn’t without a few bumps in the road but we are grateful for great nurses and doctors that took care of him at West Penn. That being said, we had some frustrating moments along the way.
Owen was born first at 4:33am. He is the only baby I saw over top of the curtain before he was wrapped in plastic and sent to the NICU. He was our Baby A throughout the entire pregnancy and was the reason for my frequent trips to the bathroom.
His first few weeks were relatively normal. He had a few more bradicardias then the girls but overall he was gaining weight and doing well. I actually remember a few days before his speed bump occurred, celebrating as the three of them were so close in weight. He was now 33 weeks old and about 4lbs 10oz.
At about 11 am that Friday morning we received a call from one of the doctors suggesting that we would be “more comfortable at a step-down facility because we had a lot of visitors.” It was an interestingly timed phone call as the night before we had two nurses who seemed a bit annoyed when we came in with some family to visit our kids and do their care. We were within the visitation rules of two people per bedside and as always, were respectful to them. I felt like the health of our kids was a secondary reason for the suggested move. It felt like we were being asked to leave because we did something wrong. I didn’t want to start over. We had our primary nurses and a level of comfort at West Penn. I was full of anxiety and emotions as we drove to the hospital, but none of this would matter by the end of the day.
I now know a lot more about the situation from Friday than I did at the time because our primary nurse filled us in the following Monday. At 7 am on Friday, Owen had two bradies within a few minutes of each other, with one of them requiring the nurses to use the oxygen mask to convince him to breath. These episodes had now become uncommon for him. When our nurse reported this to the same doctor who would call us 4 hours later to move us to a step down unit, she wrote it off as normal preemie behavior.
When we arrived at the NICU, no one mentioned the severity of Owen’s bradies from earlier in the day. He ended up back on oxygen that afternoon and when I changed his diaper at 6pm that night, I found blood in his stool. I immediately grabbed the nurse and sent her to get a doctor.
A nurse practitioner came to see him. I immediately said, “its a milk protein allergy. It runs in our family and I had it too. Blood in the stool means a milk protein allergy.” Unfortunately, blood in the stool in a preemie can be a few more things than just a milk protein allergy. They were going to take an x-ray of his stomach and run some blood work. They were worried it was potentially an infection in his intestines. When I went to pump during shift change I Googled “preemie infection intestines.” That was a mistake. I stumbled upon NEC a terrible and deadly infection that affects preemies.
Of course this was the one night I sent Mike out with his friends but he would be picking me up later in the evening. I walked back into the pod to see my son out of his clothes in just his diaper and an IV back in his arm. My face must have said it all as I tried to keep my composure. I needed an update immediately. I texted Mike to get here fast. I have never felt so much like a Mama Bear as I did that week.
Whether its true or not, my perception of that day was that bed space was more important than a nurse’s concern about my child. I didn’t want to be seen as a “difficult parent” but I learned that advocating for our children and asking tons of questions would become even more important.
The neonatologist from earlier in the day was done with her week as our designated doctor and the weekend crew had come on shift. The doctor showed me Owen’s x-rays and explained that they were worried about the gas pattern in his intestine. I would learn a lot about gas patterns on x-rays that week. Owen’s blood work came back clear but they were going to put him on IV antibiotics to be sure. They were putting him on gut rest and he would be getting all of his nutrition via an IV. He didn’t think it was NEC but they just wanted to be safe. He also said not to Google NEC. Oops, too late.
I had them turn off his web camera. I didn’t want anyone to see our little boy back in his diaper, potentially ill. And I didn’t want to take the calls from family and friends if they saw him back in his diaper. I tossed and turned all night constantly checking my phone to make sure I didn’t miss a call. We would head back in the morning to hopefully figure this out.
The original plan was for Owen to eat again by Monday but the new group of doctors didn’t like the way his x-rays continued to look and wanted to give his gut more time to heal. Our new neonatologist for the week was not willing to rule out NEC. They ran several CBC blood tests to look for infection and also a blood culture–no sign of infection. She was stuck on the gas pattern in his x-rays and still wouldn’t let him have any food. She told me she had never seen a preemie have a milk protein allergy and when pressed she would suggest it could also be a colitis. On Thursday, when he was finally allowed to eat, they started him on Nutramigen- a formula specifically for babies with the allergy. The doctor had finally ruled out NEC based on his x-rays. She would later suggest trying breast milk once more before discharge, I declined. I would not be putting him through that again.
I remember walking back to the pod to talk with Mike and being so frustrated for our little man, but it didn’t matter, Owen Joyce was eating and no longer had to rely on sucrose on his pacifier to feed his food craving. We think this is why he is our only child that uses a pacifier when he sleeps. His IV wouldn’t come out right away and it eventually would end up on his head right above his forehead. I was warned it would probably happen as its hard to keep IV’s in baby’s arms and legs, but it was still upsetting.
By the weekend, they had diagnosed him with a milk protein allergy and remarked how much more common the allergy had become in the last 15 years. It’s a much better diagnosis than what this week could have been. I can appreciate taking all the precautions but the culmination of the week was frustrating and emotionally exhausting. It was the NICU roller coaster we were warned about.
Owen would be in the NICU a few more weeks and dealt with some nasty reflux. Starting his last week in the NICU he was put on Zantac and we thickened his Nutramigen with oatmeal. We were thrilled when we we could wean him away from both of those things. He made quite the mess for months in our house but it didn’t seem to bother him.
Owen still has a milk protein allergy. We try the occasional milk product here and there but it always seems to make him angry, spitty or gassy. Besides this hiccup, he is a healthy little boy.
As an infant, and even occasionally now, he has a great, unimpressed laugh “ha ha.” He also is the first to get the full blown giggles. He has always had the best head of hair which makes his Dad very proud. As Baby A, he seems to always be the first to hit major milestones. He ate food and pulled himself across the floor first and now is taking some steps first.
As a 13 month old, he loves to play chase with his sisters and thinks the games that Daddy makes up are hilarious. He knows the sound that cows make but also thinks that sheep and ducks make that same sound. Owen loves to give kisses and cuddle with his mommy. He is an avid reader and loves “lift the flap” books and “Hunny Bunny.”
When we brought Owen home from the NICU, he and Ava could fit in the same Boppy lounger. Now he is our Big Guy, constantly on the move, exploring his world and giggling along the way.