Sunday, April 5, 2015

April 5 - Dear Nicholas Sparks (Guest Blogger Jessica Matulevich)

Dear Mr. Sparks,

At between eight and nine weeks gestation, I started bleeding and was sent to the emergency room. They saw the baby’s heartbeat and could find no explanation for the bleeding. A few days later, earlier than when it was supposed to be, I had my first appointment with the OB. She saw debris in the uterus, but could also offer no explanation for the bleeding except the possibility of a non-viable twin. At around sixteen weeks, I went for a routine sonogram that my provider requires. He immediately showed us that he was a he. The sonographer was acting funny and called in the radiologist who also behaved strangely. Neither would tell me anything. My doctor called the next day to tell me that they thought they saw fluid around the baby’s heart and that they would be sending me to a perinatologist.

It took several weeks to get an appointment with the perinatologist because the area only has two, and one was out due to a car accident. So, I spent several weeks thinking my baby was going to die of fetal hydrops. When I finally saw the perinatologist, he was rude, but did a sonogram and indicated that he did not see fluid around the heart, but that the heart was moved over towards the center. He recommended that I get a better sonogram done at the local Genetic Center and that I see a doctor within the network who specialized in fetal echo technology. I was able to go to the Genetics Center that same day. They spent hours doing the sonogram and even called in a doctor from Johns Hopkins to look at the results. She indicated that there was either a malformation on the lung or, and she thought this was unlikely, a diaphragmatic hernia. She recommended amniocentesis to rule out any chromosomal problems, even though I was only twenty-seven years old. My provider and the perinatologist agreed, and they performed it that same day. They also had me meet with a genetic counselor, which I resented, as she was barely older than some of my students, and I didn’t feel she was mature enough to be counseling me on anything. They said it would take ten days to get the results back from the amnio and that they would call me when they were in.

Ten days later I got a call saying the results were normal with no chromosomal problems. When I saw the fetal-echo doctor, he said that from what he saw, the heart was normal and fine, but that it was right-oriented. The Genetic Center recommended a fetal MRI at Johns Hopkins and my provider agreed. By this time, the baby was to be named Jacob Aaron. On the day of the MRI, Jacob was moving like crazy, which he did for every sonogram, or every time they wanted him to be still. Several days after the MRI, the perinatologist called to tell me that Jacob had a diaphragmatic hernia, that his chances for survival weren’t good, and that he wanted me to set up appointments with both the Children’s Hospital in DC and with the Children’s Hospital of Philadelphia because they did in-utero surgery. After setting up the appointment with Philadelphia, we found out that they no longer did the in-utero surgery, so my provider cancelled that appointment but assured me that we would have a head to lung ratio done somewhere else.

I met with the surgeon from Children’s hospital, and we discussed possible outcomes. He said that with no other problems and the fact that lung tissue had been seen in previous sonograms, the baby’s chances looked good. Before he could give me a better prognosis, though, he wanted the radiologist there to look at the sonograms and the MRI. He called me later that week to tell me that all the radiologist saw in the chest cavity were the intestines and that they had the tenancy to move in and out which should allow the lungs to develop, therefore he felt the prognosis was very good. A few weeks before Christmas, I had another sonogram with the radiology department at my provider’s office. They acted very strangely again, despite the fact that they already knew that I knew something was wrong. When I got home, I called the nurse assigned to me through my provider’s high risk program and told her what had happened. I was assured that I would have an answer the next day. I did not. By this time I had weekly appointments, which alternated between the perinatologist and a regular OB doctor. At my appointment with the regular OB doctor, I indicated what had happened at the sonogram and that the perinatologist had not chosen to get back to me after promising to do so. So she pulled the results. They simply indicated that there was additional fluid, which is normal in babies with this malformation. The next day that perinatologist called to tell me what I already knew.

The following week I had a sonogram with him that was supposed to be sent with me to my appointment at Children’s the week of Christmas for my final consultation with the surgeon before the baby’s birth, and for a head to lung ratio to be calculated by the radiologist at Children’s. During this sonogram, the perinatologist had another doctor in the room with him. I felt as if I was their science experiment, as apparently neither had seen a diaphragmatic hernia in about twelve years. Also during the sonogram he began to use medical terms that I am sure he thought I did not understand, and at one point he indicated that the stomach was also in the chest cavity. I asked him about this, and he seemed shocked that I understood what he was talking about. I’m not stupid; I had been conducting my own research even before they made the final diagnosis. He indicated that he did see the stomach there. I got upset and started to cry. After the sonogram was over, I went into the adjacent bathroom to wash my face. When I came out, he looked at me and said, “Well, you know only about a third of these babies live.” I was appalled. That may have been the case when he graduated medical school back around the time I was born, but from everything I had read, fifty percent was about average and even that wasn’t entirely accurate because they should be evaluated on a case by case basis. Then, the day before my appointment at Children’s, the high risk nurse called to tell me that the perinatologist had accidentally taken my sonogram films with him on vacation. I was irate. He indicated to her that I didn’t really need them and that he would be sending a written report to the surgeon and speaking with him the morning of my appointment. Needless to say, I was not very fond of this man by this point. While I appreciated the fact that he saw his own shortcomings and sent me out for consultations that he couldn’t have possibly evaluated himself, he still managed to be infuriating in his lack of bedside manner and organization.

At the appointment with the surgeon, he told me that even without the sonograms, the radiologist indicated that the head to lung ratio as per the MRIs looked good. He also recommended steroid treatments for the baby’s lungs and an induction, so that the transport team and he would be ready. I had to give birth at Washington Hospital Center, which is next door to Children’s, and then he would be transported. He still indicated that he believed that Jacob’s prognosis was good. That afternoon I had an appointment with the regular OB. She gave me a betamethazone shot and indicated that I needed to have another twenty-four hours later. She also scheduled the induction for January 22nd. I would be admitted the night before so they could ripen the cervix before starting the pitocin. Plus, by this time I was having twice-weekly non-stress tests, which Jacob was passing with flying colors. After the steroids, my weight had dropped, but they weren’t concerned as I had plenty of it. In addition, my edema all but went away. But at my last (thank God) appointment with the perinatologist he ordered a preeclampsia test because he thought my blood pressure was high. All of those tests came back normal, but he put me on bed rest anyhow. I still think that my blood pressure came up high at appointments with him because I had to see him.

At my next appointment, only a few days later, with the regular OB, my pressure had dropped ten points. I went in to the hospital at 12 A.M. on January 22nd for the induction. Jacob was born at 6:10 that evening. Although we had been told he would not cry and that he would be blue upon arrival, he did cry and his color was good. In fact his Apgar scores were that of a normal baby. He was intubated at two minutes of life. The neonatologist placed him on my chest long enough for me to kiss him four times before they took him to their NICU to prepare him for transport to CNMC. After he was loaded into the transport incubator, the transport team came by my room so that I could say goodbye to him. I was allowed to reach in and touch him. He was not moving, as he had already been sedated. I cried for the rest of that evening. I wanted to be with Jacob. I wanted everything to be normal. My mom was allowed into the NICU to spend some time with Jacob after he arrived there.

At about 2 A.M. on the twenty-third, CNMC called and requested my consent to put Jacob on ECMO. I gave it, knowing that I would do anything if it meant Jacob would make it through this. The next morning I told the hospital where I gave birth that if they didn’t release me, I would release myself. They released me, and I went with my mom and her husband to the NICU at Children’s. When I saw Jacob lying on that warmer, I couldn’t control my tears. I was allowed to touch him although I thought I wouldn’t be able to. Even though I had prepared for this, there is no preparation in the world enough to see your baby lying there with tubes coming out of his neck-- knowing that a machine is responsible for his life. I went to the Ronald McDonald House to check in. I knew I would not return to my home without Jacob.

Then I returned to Jacob’s bedside where I stayed. I would leave at night to go home and sleep, and I would leave when parents were not allowed in because of rounds. I also would leave for about a half an hour for lunch. Aside from that, I never left Jacob’s bedside. He was on ECMO for eleven days. I stroked his hair and held his hand the whole time. I also put lotion on his body to combat the dry skin. It was incredibly hard watching the nurses do what I should have been doing as Jacob’s mother. I also went to the chapel every day and prayed. I pleaded with God at Jacob’s bedside to save Jacob. I also allowed visits from the hospital chaplain, and we prayed together at Jacob’s bedside. I went home every night and prayed as well.

When he came off of ECMO, I was finally allowed to change his diaper and give him his sponge baths. I can tell you I will never complain about changing a diaper ever. It is a privilege when you are not allowed to do it. After coming off of ECMO on the third, Jacob was supposed to have his surgery on the fifth, but his blood was acidonic. They treated it with sodium bicarbs, and on the sixth one of the surgical residents came to me and asked if it was okay if they did the surgery that same day. I consented. I called my mom, and she got there before they took him for his surgery. I cried as they packed him in the transport incubator yet again. He was almost too big for it. I was so scared- partially because that incubator looks something like a small coffin when it is open. I was allowed to walk with him down to the OR, and they let me touch him one last time before they took him in for his surgery. I spent the whole time in the waiting room crying and praying.

After a couple of hours Dr. Newman came to the waiting room and told us everything had gone well and that Jacob had done great. He also told us that Jacob had enough of his own healthy diaphragm to sew back together as opposed to using a gortex patch. In addition, they saw a small, but healthy, left lung. I had been warned that Jacob would probably get sicker before he got better after his surgery and to not be surprised if he had to go back on ECMO or if he had to receive nitric oxide. They said the first seventy-two hours would be the most critical. He made it through that time with no complications and without getting sicker. He was on the ventilator for another eight days after his surgery, for a total of twenty-four days of intubation. Hearing him cry was amazing. Just two days before he was extubated, I got to hold him for the first time. He spent a total of seven weeks in the NICU. The last week was spent figuring out the severity of the reflux.

The day he was discharged, the doctors told me that the day before they had found a ventricular septal defect (a small hole in the heart) and a tricuspid valve aneurysm. He came home on reglan and zantac for the reflux as well as on oxygen (1/8 of a liter) and an apnea monitor. He came off of the oxygen on April 19, 2002. He is still on medications for the reflux and is not always fun to feed, but he is growing as he should and developing as he should. He sees a cardiologist regularly who believes that the hole in his heart will close on its own eventually. Jacob is happy and healthy with no developmental problems thanks to Children’s Hospital, the NICU team, my mom, and God. I love Jacob more than anything in the world, and he was worth every moment of sorrow.

Written by Jacob's mom, Jessica Matulevich (Maryland)

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