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Challenge: NICU Parenting


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Patrick's story actually begins 2 years before his birthday. His brother Will came into this world 16 weeks early weighing 1 pound 8 ounces, and he was a fighter. We knew that babies born that early didn't have a great chance of survival, but he made it through heart surgery, two NEC surgeries that resulted in an ostomy, LASIK eye surgery and struggles with the ventilator. Our perspective on parenting changed drastically when we realized were getting excited about the news that Will had only minor bleeding in his brain. The doctors told us that we should start getting our house ready for Will, but while we were painting his room, we got the call that during a routine central line placement, they had difficulty and he wasn't doing well. Finally, after 99 days, Will developed an infection that ultimately took his life. It was a difficult decision to have another baby after we lost Will. We didn't know why Jen went into labor, and we weren't sure of what we could do to stop it. With Patrick, everything seemed to be normal until it suddenly wasn't.

When Jen was only 21 weeks along, we found ourselves in the high risk unit of the hospital, looking at an ultrasound that showed Patrick's amniotic sac pushing through my slightly dilated cervix. We were devastated. We couldn't believe it was happening again. Fortunately, we'd gotten there soon enough that with medication and being in the reverse trendelenberg position for five days, the doctors were able to put in an emergent cerclage to hold her cervix closed. Jen went home shortly after the surgery, just to be readmitted to the hospital on August 8th, 2008. For the next month, she was on strict bed rest in the hospital. If there was a medication to stop contractions, she was on it. The doctors had to insert a PICC line to deliver the medications because Jen's veins were getting weaker. The only reason she was able to get out of bed was to go down the hall for weekly ultrasounds. When we hit 28 weeks, it was a massive relief, knowing that the survival rates were so much better than 24 weeks. They had even started reducing the medications, hoping we could give our baby a few more weeks without needing all the intervention. The day before Patrick was born, Jen could tell something was wrong. Something just didn't feel right. We started monitoring contractions, and sure enough, they were happening again. They maxed out on the magnesium sulfate, and then added tributaline. At 2 in the morning on the day he was born, the on call doctor had the nurse insert a tributaline pump into Jen's leg in hopes that it would stop. It didn't. She was 29 weeks pregnant at this point. Some time in the afternoon, they moved us to the labor and delivery room. They told us that it was “just in case” but we all knew that Patrick would be coming soon.

Finally, at 10:53 on September 8th, Patrick Bruce Connealy came into the world. There's no way to describe the emotions we felt when we heard him cry the first time. We knew he was going to be okay. Patrick was referred to as a “Grower Feeder” kid, and was often called the easiest baby on the unit. It was such a drastic change from having the sickest kid, it felt easy (which feels crazy to say about being in the NICU)! We spent 6 weeks at the hospital, and then all of a sudden, he was ours. No wires, no tubes, no monitors. Just this happy, healthy baby boy who was a little on the small side, but perfect.

At this point, it was confirmed that Jen had an incompetent cervix. We hadn't planned on having another baby, but shortly after his fourth birthday, Patrick became a big brother to a full term little boy that we named Daniel Andrew. The doctor placed a cerclage at 16 weeks, and other than one scare with contractions around 32 weeks, Jen's third pregnancy was as normal as anyone could have expected. The difference from an extreme preemie with every complication in the book to a 6 pound 14 ounce 37 week baby was unbelievable. Three days after he was born, we went home. Daniel was never hooked up to monitors, and we could hold him any time we wanted – it's possible Jen didn't put him down for an entire week after Daniel was born.

Will would have turned 11 this year, and while it certainly hasn't gotten easier, our grief has changed. We have two amazing boys to celebrate, and one in heaven who watches over his brothers. We've learned it's okay to be happy, and that it's okay to be sad. Patrick and Daniel know all about Will, and they wish their brother was here with them. We talk about Will to remember him, because he's still a part of our family no matter where we are.

There's something about these boys - they are all stubborn and determined to succeed. We had so many warnings about the impact being born prematurely might have on Patrick, but he's surpassed everyone's expectations and then some. He's in third grade now, and his favorite subjects in school are math and reading. He plays sports and chess, and loves coding. He's constantly amazing us. Daniel is in preschool, and he has the most entertaining sense of humor I've ever seen in a kid his age. He loves to make everyone laugh, and he loves to be Batman.

Our experience in the NICU has made us who we are today as parents and as people, and so many wonderful people are in our lives because of our boys. Some might disagree, but we think we're lucky in so many ways.

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