We were very excited when we found out we were expecting our first child. Everything was going pretty smoothly. We had a relatively uneventful pregnancy. I didn't have much morning sickness, and didn't swell up much until toward the end. On September 21, 2001, our fifth wedding anniversary, I had a routine doctor's appointment. Imagine my surprise when I was told that I was well into labor and 5 cm dilated! We rushed home for my bags and headed for the hospital.
We checked in about 11:00 am through the Emergency Room. (We heard there was less of a wait there!) We were taken to L&D Room 1 where we got settled in. I asked for and got my epidural shortly thereafter, my water was broken, and I was given pitocin to help things along. About 3pm the pain started to kick in, and I soon felt the urge to push. After 54 minutes of pushing, our angel was born at 5:13 PM. He weighed 8 pounds, 9 ounces, and was 21 inches long.
We had taken birthing classes, so we knew pretty much what to expect. As soon as he was born, I knew something was wrong. He was placed on my belly for Daddy to cut the cord, but then instead of leaving him with us to cuddle, he was immediately taken over to a bed in the corner of the room where nurses huddled by. He didn't cry, and when he would try to breathe, his whole little belly would cave in. His Agpar scores were low. I later learned that he was being bagged right there in the delivery room, as they did not want him to try to breathe on his own. The doctor was conveniently blocking my line of sight, but my husband could see them bagging him, and he later told me he thought they were doing CPR.
They took the baby to the nursery before the doctor was done with me. I kept asking if he was OK, and the doctor kept telling me he was fine, but I knew deep down that something was wrong. I wanted to believe him, but there was a part of me that just knew.
They finally finished up with me and were getting ready to move me to the maternity ward, when "someone from the nursery needs to come and talk to you." I thought he was dead. The nurse came in and gently explained that the baby had something called a Congenital Diaphragmatic Hernia (CDH). Basically, the diaphragm is the muscle that separates the chest from the abdomen. His diaphragm didn't close, and had a hole in it. Some of his abdominal organs had come through that hole in utero, and had impeded his lung growth on the left side. They had to intubate him, because the more he breathed, the more damage he could do. Then, he fought the ventilator tube, so they had to sedate him. He would have to be life-flighted to Children's Hospital in Pittsburgh. They had called for a helicopter, and I could see him before he was taken. They wanted us to name him, but crazy me...I wanted to see him first. Throughout his entire hospital stay, all of his tags said "Unknown Bryant" because of that!
Around 8, the helicopter was finally there. They had brought a respirator with them, as Washington Hospital didn't have the machine for infants. Up to then, someone had to stand with our baby, continuously using a bag to push air into his little lungs. He was hooked up to the machine, and I was wheeled in to say hello and goodbye to my newborn son. He was lying there, motionless, seemingly asleep. I got to touch his little hand, but he could not squeeze me back. Saying goodbye to him was the hardest thing I have ever had to do. I didn't know whether I would see him alive again. We named our lovely son Patrick Neil, and sent him in the care of the kind transport team. I even remember telling the pilot to Fly Safely with my little guy....he must've thought I was crazy!
I was required to stay in the hospital overnight. It was decided that my husband and my parents would stay in Washington, and my husband's parents would make the trip to Children's to be with Patrick. God bless them, they spent the night in the NICU waiting room to try to give me some kind of peace of mind. I will never forget that. I insisted that my husband and parents go back to the house and try to get some sleep...we all knew that Saturday would be a long day. I also asked Rick to look this Diaphragmatic Hernia thing up on the internet and bring me more info.
Needless to say, I didn't sleep at all that night. I tried to watch TV just so it wouldn't be so quiet, but I couldn't stop thinking about Patrick. Rick came in at 7am with some print-outs that I later learned were censored for my sanity. CDH affects about 1 in 2500 babies, mostly boys, mostly on the left side. (That's where Patrick's was.) It requires surgery to repair the hole. I later learned that the survival rate is 50%. At 7:30 am, my doctor came in and offered to release me. So after a shower and a little clean-up work, we headed to Pittsburgh.
They try so hard to prepare you for what you are going to see when you go into the NICU, but nothing can prepare you for the sight of your child hooked up to all of those tubes and wires. And then they have to tell you all the things that can go wrong. Mind you, you have no choice but the surgery, but they still have to tell you the possible consequences. It was mind-numbing to hear it all at once, while still trying to comprehend that that is your SON under all those tubes and wires. I made Rick sign the papers...I'm such a sissy.
They had to wait for his stats to stabilize before doing the surgery. The plans were to operate on Monday, and they almost went through with that, but they didn't like the looks of the pressure in his lungs (pulmonary hypertension). So then they thought they'd wait until Wednesday. Well, on Tuesday, he looked so good and stable that our surgeon, who was OFF that day, came in and performed the surgery at 5 PM. They did his surgery right there in the NICU...they were afraid he might destabilize if they tried to move him. Just past 7, they came out to tell us it had been a success. The hole was small enough to repair without needing a patch. His small intestines, spleen, and part of his large intestines were in the chest cavity. Fortunately, his abdomen was large enough to hold all of them, so everything was repositioned, the hole was closed, and the healing could begin. But now the hard part would start.
For days they worked on getting the respirator settings down. They were slowly allowing him to wake up enough to take some breaths, but worried because he was breathing at a fast rate. One day he tried to pull out his vent tube, so they tried to take him off the machine, but he wasn't quite ready and had to be reintubated. Two days later, they took him off the vent for good. They were a little worried about how his digestive system would process food through his stomach, as all of those organs were out of his body during the surgery. So they very slowly started to turn down the IV feeds and increase the feeding tube amount. They had to use a feeding tube, because they were afraid to feed him orally right away since his breathing rate was so high, they feared he would aspirate. Finally, he was allowed to start bottle-feeding. I had been pumping and pumping, so he was started on my milk. He took to the bottle really well, and after a few days, we were allowed to start nursing. He was eating really well before long, and gaining weight. As long as he continued to gain weight, we could finally think about going home.
Finally, on October 15, 2001, Patrick was able to come home from the hospital. Of course, we also brought home lots of equipment - monitors and oxygen tanks. He also came home on two reflux medications. But he continued to improve at a fantastic rate. He was off the monitors by Thanksgiving, and off the meds soon after. We were housebound for that first winter, though, with instructions to stay away from crowds and children, and he had a Synagis shot every month for RSV protection.
Patrick is now a happy, heavy little boy, who amazes us every day. He knows all of his letters, both uppercase and lowercase, and can count like a champ. He can write his own name, without any prompting. He enjoys playing with cars and balls, and loves to be outside. We have fun going to the park, the zoo, and Idlewild. He even rides most of the rides!
Patrick does continue to struggle somewhat with some lingering issues, and last year he was diagnosed with something called PDD-NOS. It is on the Autism Spectrum, but on the high end. He attends preschool 3 days a week, has home-based therapy, and attends an evening socialization program 2 days a week. He also is working with a speech therapist for 2 sessions weekly. His progress has been tremendous and we are very proud of him.
To see him now, you would never know that he had these problems. But to us, he will always be a miracle. We continue to monitor his development to be sure we are doing all we can to give him the tools he needs to be successful in life.
I know it is the love and prayers of our family and friends, and the skill and talent of the doctors at Children's, that have caused Patrick to be with us today. I will never forget the support we received, and continue to receive, from so many different places. We are so blessed in so many ways. Thanks to all of you.
Patrick in the NICU
Last modified April 18, 2005