Thursday, December 3, 2015

December 3 - Dear Nicholas Sparks (Guest Blogger Ed Swartz)

Dear Mr. Sparks,

Jill and I left to meet Jill's obstetrician, Dr. Ruggiero, at Lourdes hospital in Binghamton, NY. When we arrived we found that Jill wasn't close to delivering. A few hours later, Jill's other obstetrician, Dr. Canino, arrived and put her on Pitocin to induce labor. Contractions came on stronger and more frequently after that. As soon as the baby arrived, Dr. Canino flipped it around and announced that we had a baby girl. Dr. Canino placed her on Jill's stomach, and I cut the umbilical cord. We named her Alisha after her grandmothers Alice and Sharon. Alisha was born at 12:27PM, about seven hours after we left for the hospital.

As soon as I cut the cord, my first concern arose. Alisha didn't cry, at least not like I had seen my two sons cry. Our head nurse started bagging Alisha as she appeared to need a little help breathing. I stopped video recording at this point as I sensed something wasn't right. The nurses took Alisha to the nursery, and Dr. Canino followed.

When I arrived at the nursery, all the blinds were down. It stopped me in my tracks. I caught Dr. Canino's eyes through the blinds, and they were wild in fear. I felt I should leave the area. I stopped momentarily in the waiting area between the nursery and the birthing room to collect my thoughts as to what to say to Jill and Alice. The intercom announced, "Code Blue Nursery". I knew this call was for Alisha. A moment later, an urgent call "CODE BLUE NURSERY". My heart sank as I sensed we were loosing her if we hadn't lost her already. I returned to Jill and her mother, Alice, and told them that something was wrong, but that I didn't know what. Dr. Canino arrived at this point and informed us that our baby wasn't breathing on her own, and that I must see the baby even if it was through the blinds of the nursery. I did so. As I watched, Dr. Canino came to the window and mouthed, "Better" which meant they were getting a heart beat and they were getting oxygen in her. Soon Dr. Canino came out, and asked that I return with him to the birthing room. Dr. Canino proceeded to tell Jill and I that Alisha was a very sick baby. She had a hole in her diaphragm. Her intestines came up through the hole, pushed the heart to the right side of her chest cavity, kept her left lung from developing and constrained her right lung. This was preventing the proper oxygen level from entering her blood stream, and her heart was working too hard to make up for it. Dr. Canino insisted that both of us walk to the nursery to be with Alisha.

When we entered the nursery, we noticed our children's pediatrician, Dr. Szkodzinski, on the phone. Someone explained to us that he was making arrangements to have our daughter flown to Crouse Irving Memorial Hospital in Syracuse, NY where they could better care for Alisha's defect. Alisha was blue and cold from lack of oxygen. Nurse, Nancy Jardine, pumped for over an hour and a half, and got her heart rate and blood pressure to better levels. Around this time, respiratory therapist, Pam Ryman, and nurse, Nancy Forsyth, arrived from Syracuse via helicopter. Jill and I were asked to leave the room as they intubated Alisha. Neonatologist, Dr. Yoss came out with the unenviable duty of informing us of the severity of the situation. He said that while in Syracuse, Alisha would be on a ventilator to control her oxygen supply. If this didn't work, they'd put her on nitric oxide which carried some risks such as deafness. If this didn't work, as a last resort they'd put her on a heart/lung machine called ECMO. If on ECMO, she'd be on it anywhere from a few days to up to three weeks after which she'd either be recovering or will never improve. Around 5:30PM, Jill and I bid Alisha farewell. I kissed Jill goodbye after taking her to her private room at the end of maternity. Her mother remained with her. Jill had to stay because she had to heal some, and she needed monitored to ensure there was no post delivery infections.

I went home, and explained to my sons, Christopher and Matthew, that Jill delivered them a baby sister that was very sick, and that Mommy was just fine. I also explained to them what a diaphragmatic hernia was. Christopher, age 8, understood. Matthew, age 3, didn't quite get it at this point.

When I arrived in Syracuse around 8:30PM, my worst fears were reality. Nurse, Nancy Forsyth saw me arrive, and informed me that they were preparing Alisha for ECMO. Alisha did not take to the ventilator alone, nitric oxide didn't help, and the last resort was all that remained. I was introduced to Dr. Hingre, who informed me that this defect is often diagnosed ahead of delivery through ultrasounds. Jill had level-one ultrasounds at 18 and 22 weeks, and the defect was not observed. He informed me that diagnosing it ahead of time would be of little good, except to prepare us for the events to come. While in NICU, I positioned myself at the rear of the nurses' station in view of the ECMO room. The sight was simply awesome. The 15' x 20' room was crammed with about twenty people. The lights were out, and it was dark except for a couple flashlights and Alisha's table. There, four feet off the ground, lay Alisha on her back like Snow White sleeping in her bed with the light shining on her. She was so tiny. The scene was intense, and I felt so helpless 30 feet away.

When the lights came on, Alisha was on ECMO, and the whole nursery breathed a sigh of relief. Pediatric surgeon, Dr. Nicholett, informed me at my asking of the long-term risks associated with the road to recovery from a diaphragmatic hernia. She informed me that lungs, even constrained and undeveloped lungs, grow over eight years. She informed me of the risk of asthma during that time. She informed me of digestive problems associated with the hole in the diaphragm. Alisha would be in the hospital a couple months before she'd improve enough to go home. In the short term, she indicated that they'd wait several days before performing surgery on her for her hernia repair so that her heart got stronger and her lungs got better oxygenated.

Shortly after lunch the next day, Jill arrived from Binghamton. She was discharged that morning from Lourdes hospital, the day after delivering Alisha. She was in pain and bleeding, and she should not have been walking around, but she really needed to see Alisha. Her visit was brief, but very important to her, and she returned back to Binghamton to heal and provide our boys the attention they needed. Our plan for the next two weeks was for me to stay with Alisha during the week, and for Jill to bring the boys to Syracuse on the weekends to visit. We planned to switch roles after that, presuming that Jill was healed by then.

A few days passed uneventfully. Saturday morning, just before Jill and I left for the hospital, I received a call from Dr. Nicholett indicating that Alisha's hernia repair was moved up from Monday to that day at 1PM because her conditions were right, and a good staff was assembled. By 1:20, a procession to the operating room (OR) started. Her primary team of doctors, surgeons, nurses, and ECMO staff walked in step. Security had cleared the halls, and they had removed the carpet on the first floor to ensure that none of the casters on the equipment snagged during the route. About three and a half hours later, Alisha's team came back in similar fashion to how she left. There were more smiles this time. Dr. Nicholett briefed us a little later. Alisha had a very stable and uneventful surgery. She had virtually no diaphragm on the left side. She attached a Gortex patch to whatever tissue was available.

The next morning, Sunday, Dr. Nicholett called to state that the ECMO circuit was clotting, an effect from the previous day's surgery. A circuit replacement was necessary. By 11:30, the procedure was started, and an hour later it was completed with no complications.

The next few days went very well. Alisha was awake a lot, and she moved her hands and legs. She looked a lot like her brother, Matthew. It was at this time that I realized how beautiful she was. Her eyes really brought it out. They were big brown eyes, and they made me realize how much life was really there. She tracked my movements, and her reflexes seemed normal. By the end of Tuesday, Dr. Nicholett planned to take her off ECMO in the morning.

I got the call at 9:30AM Wednesday. Alisha's trial off ECMO did not go well. When they took her off, her oxygen levels dropped rapidly. Dr. Nicholett mentioned that I needed to be aware that Alisha may not come off ECMO. I said that she had to. She agreed. Despite the bad news, Alisha looked a precious as ever. Her eyes opened often and her reflexes were good. However, by Thursday, everyone noticed that her abdomen was swelling.

Friday morning, I got a call from a nurse who said that Alisha was bleeding internally, and that I should come to the hospital as soon as possible. When I arrived at the hospital, attending neonatologist, Dr. Bifano, informed me that an ultrasound confirmed that blood was filling her abdomen, and that the situation was very serious due to her being on blood thinners for ECMO. I called to have Jill pull the boys out of school and come to Syracuse. I told her the situation was grave. We met with Dr. Nicholett whom, after consulting with her colleagues, recommended that surgery be performed to find out where the problem was. After an hour an a half, Dr. Nicholett met us upon completion of the surgery and informed us that a bruise on her small intestine had ruptured. The surgeons were able to control the bleeding, but not stop it. So they brought the bowel to the surface to watch it closely. They were not able to remove it as they normally could due to the blood thinners in her system and the associated risk of bleeding. As after the first surgery, the ECMO circuit needed changed again due to clotting. It was completed successfully.

Sunday, Alisha was quite alert, and we took tons of pictures. The boys seemed to enjoy seeing her eyes open. After the boys' visit, I took them back to Binghamton while Jill stayed in Syracuse. After putting the boys to bed that evening, I spent hours scouring the Internet for information on diaphragmatic hernias. I had been without access for the previous two weeks, and I was glad I got on it. There was a lot out there.

The next few days were spent ventilating Alisha's lung in hopes that it would open up. It opened a little each day, leaving some hope despite the previously unsuccessful trial off ECMO.

On Wednesday, Pam Ryman, Alisha's ECMO coordinator informed us that Alisha's lung was not improving as it continued to have a lot of resistance, forcing the blood to be shunted to arteries without being oxygenated. There was concern that her lung passages were in a fixed state and would never take in oxygen. Later, Dr. Nicholett stopped by to state that she and Dr. Marr wanted to meet with us the next day. I knew it was bad news. She stated that Alisha did not take another trial off and that the four of us needed to set a plan. Jill and I needed to leave the hospital to grieve. I called our minister, Reverend Barry Downing and requested that he come up to baptize Alisha. He said that he and Reverend Janet would come up the next day.

The next day, Thursday, was a tough day. Reverend Barry and Janet arrived around 10:30AM for Alisha's baptism in the ECMO room. I felt a sense of wholeness on Alisha's behalf by having her baptized, and I was grateful for having her receive the sacrament. A little later, we had our meeting in the hospital conference room with Dr. Marr, Dr. Nicholett, Dr. Bifano, Pam Ryman and Bruce Searles. Dr. Marr indicated that Alisha's lung had opened the whole way, and that it still wouldn't take in blood for oxygenation. She indicated that they had done all they can do, and that by Saturday, recommended Alisha be taken off ECMO. I had previously asked the doctors about the feasibility of a lung transplant, and I asked them what they found out. Dr. Nicholett indicated that fetal organs are very hard to come by, and that Boston, Philadelphia, Pittsburgh, and several other hospitals would not consider Alisha for transplant as her chance for survival was remote and her quality of life would be dismal. The hospital staff provided us with material on how to spend your last moments with your child, and we read a lot of it. We came to the realization that our dreams for Alisha were shattering. We hadn't lost hope for a miracle, but we knew a miracle was all we had left.

Friday was in many respects, the toughest day. Jill and I invited our parents, brothers, and sisters to come in town to visit Alisha before she died. We explained to our sons that Alisha was not going to live. As the day progressed, I became more depressed knowing that our time with our only daughter was drawing to a close. Jill and I didn't sleep well that night in fear of the events to follow the next day. We were scared as we envisioned a dreadful passing.

Saturday morning, we called Dr. Marr to find that Alisha failed her final trials off ECMO. When we arrived at the hospital, Pam Ryman and nurse, Helen Fisch, suggested that we bathe Alisha which we did with some assistance from Helen and nurse Beth Gibbs. It was a special moment. Then we dressed Alisha in an outfit and bonnet grandma Sharon bought her. Alisha looked precious all dressed up without the tubes and probes. At this point we felt it important for the boys and visiting relatives to see her this way as opposed to how they had seen her earlier. So we invited them in one last time, and everyone was very glad to see her this way. We took lots of pictures and video, and Alisha was very alert and aware of everyone around her. Then, around noon, everyone left and it was just Jill and I with her key hospital staff, Pam, Bruce, Beth, and Helen. Jill held Alisha in a rocker. I sat in a rocker next to her and held Alisha's hands and stroked her face as she was weaned off ECMO. The experience was very peaceful and nothing like the horror we imagined the night before. For about an hour, Alisha looked at us, gripped our hands, and rested with us as her blood pressure and heart rate slowly decreased and her body cooled. Jill and I cried hard, told her that we love her and will miss her, and bid her goodbye. It was an hour we'll treasure for the rest of our lives. At 1:27PM, Alisha's heart slowed to a stop.

Alisha died of pulmonary hypoplasia resultant from congenital diaphragmatic hernia. We had her cremated. We had a memorial service for Alisha the Saturday following her death. During the week, I prepared a photo album of the many pictures we had taken of Alisha during the nineteen days we were with her. I thought this would help put life to the name for the many people who attended Alisha's service, but had never seen her. Alisha's memorial service was difficult, but very beautiful. It's been two months since Alisha's passing. Our family thinks of her and views her photo album often. The healing is taking place albeit slowly. We love Alisha, miss her very much, and look forward to the day when we see her in heaven.

Written by Alisha's dad, Ed Swartz (New York)

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