Surprise

February 25, 2008 MY DAUGHTERS BIRTHDAY
I called Hopkins this morning. He made it through the night but they didn't know how much longer he was going to make it. I was not allowed to be discharged until 5:30 p.m. Hopkins knew we were coming as soon as I could get released so they were trying to keep him alive long enough for us to say our goodbyes. I still have not gotten to really take a look at my son at this point. He was whisked away and when I went to see him in the NICU I felt like I was rushed and wasn’t supposed to be there.
I sat in my room all day at FMH. No one came to see me except for the nurses. They came to check on me and were supportive. No doctors came to explain what had happened; it was like they were afraid to talk to me. My regular OB did come early and get me released early around 1:30 p.m. The Head of Labor and delivery came and asked us if everything was OK. I told her that the people she was in charge of were great it was the other area that I was upset with. I complain of one nurse though that I had on Saturday night.
When my regular OB came to talk with me and release me, another lady came in to talk with us as well (nursing director?). We told her about the situation and how we thought it was wrong how they treated us with threats and coercion. Had the neonatologist been up front with us about calling social services, we would have left and delivered at Hopkins where I could have been with my baby and not prolonged his or our agony. We also complained about not being told what was going on.
We went to Hopkins and he was still on the ventilator. We said our goodbyes to our baby and left to get something to eat while they dressed him in preparation of pulling the plugs and to allow us to take pictures before and after death. They put the outfit we had taken on him and wrapped him in his blanket after they turned off the machine. We were called back in to say goodbye again and take pictures. He was perfect on the outside. The only thing visible was the cut on his cheek which I assume was from where they ripped the tape off to remove the breathing machine.

February 24, 2008 (32 weeks)
I got my epidural around 10:30 a.m. I got a new nurse at 7 a.m. and a new neonatologist was on call as well for this day. He came in and introduced himself and that was about it. The new nurse was caring and showed concern for me.
At some point after my epidural but before lunch, I was asked by my nurse if we were interested in having a social worker come talk to us about dealing with the death of a child. I said why not since that information could not hurt and we would have it in case we needed in the future. Someone came to my room around 1:00 p.m. and did not give us any information of that sort. Again many of my family members were in the room at this time. First, she asked if our religious beliefs had anything to do with our medical decisions. I said no. (What does this matter?) She told us that the neonatologist that we talked to yesterday had called social services because we were going to murder our child if we chose not to transport him. He had to be stable to be transported. I felt sorry for her because a lot of my family jumped on her for saying this when it wasn't her fault and she was just reporting what she was told to do.
At this point, I was considered to be in active labor. I had my epidural. I could not be transported to Hopkins.
I had my baby at 5:22 p.m. Andrew Martin was 4 lbs 10oz and 17 in. long. He tried to make a noise and then he was whisked behind a curtain where the neonatology team assessed him and got him intubated. They transported him to the NICU. My husband and Emily followed him to the NICU while they were manually hand bagging him to try to pump oxygen into his lungs. From that point on I had no contact with anyone on how he was doing. The neonatologist kept asking my husband why I was not there. I guess he thought I should have jumped out of bed and ran down there. I finally did get to go see him in a wheelchair. The neonatologist did not ask us anything nor did he explain what was happening to him. He just stood there with his arms folded.
While I was still in the delivery room Emily and Joe waited in the breast pump room of the NICU for the doctors to talk to them and explain what they were doing for Andrew. Emily heard one of the nurses cheer "whoo whoo we are going to Hopkins!" as she ran out of Andrews cubical. Emily asked her "oh really we didn’t know that", and the nurse quickly turned tail and ran. In the meantime one of Tracey’s labor and deliver nurses came back into the NICU to see how Andrew was doing. She asked Emily how he was doing and she told her that my husband and she had no idea. She offered to go check on him for us. She reported that they were still working on him and that the neonatologist would come talk to us soon and that he knew we were there waiting to speak with him. Emily and Joe finally met with the neonatologist about 1 hour after he was born, just briefly in the NICU "consult room" where he showed them an x-ray of Andrew’s chest. You could see his stomach in his abdomen but nothing else, his entire chest cavity was shadowed and we couldn’t tell what was what. He didn’t show them where any of his organs were. Emily asked the neonatologist to show us his lungs (specifically) and all the doctor said was they were waiting for a sonogram of his chest to determine the exact placement of the liver so they could put in another chest tube (they didn’t ask permission to place the tube, he just said they were going to do it). So Emily asked again to have him point out the lungs and he said they wanted to put the tube in first. Never had any other report from this man!!! At this point Joe went to tell me what the doctor had said-not much, and to bring me to see Andrew. Emily stayed behind and got to take a picture of Andrew and touch his arm. Basically Emily and my husband had to hunt the neonatologist down to ask him information and then he still didn’t give any. Emily and my husband tried to ask questions of the Dr. but he seemed to refuse to answer any of them.
At this point all we were waiting on was for Hopkins to come and get him. The neonatologist told my husband around 6 p.m. that Hopkins had been called and they were on their way. He finally left at 11:30 p.m. The doctor from Hopkins that was going to take him came to my room and I told him I had been forced under duress to sign the consent form for him to take him or we were going to be turned in to social services for trying to murder our baby. He did not want to take him because he did not think he would survive the transport and I was not allowed to be transported with him so I was not going to be with my baby when he died. FMH refused to release me for 24 hours. He called me when he got to Hopkins and told me that his heart had stopped and he had to give him adrenaline. He was on an oscillating ventilator and he didn't think he would survive the night since his blood gas levels were aweful. Andrew was not able to get enough O2 in and CO2 out. I was so mentally and physically exhausted. I asked them not to call if he died during the night as I wanted to get some rest.

February 23, 2008 (32 weeks)
My water broke around 1:30 p.m. (right before my daughter's birthday party). We called an ambulance to pick me up. I was put in a labor and delivery room at FMH. They had to determine if my water had broken since it was so bloody. It took them a long time to determine if this was the case. It was confirmed that my water had broken. I was not considered in active labor since my contractions were not consistent. At this point, I was trying to determine if I was going to leave or just deliver there. Dr. Miller, the head of the Neonatology Dept. came in to talk to us about our options. The OB that would deliver me, two nurses and some of my family were in the room when Dr. Miller came in. Dr. Miller said that based on Hopkins report of a 1% survival based on 40 week gestation that she would not do nothing when the baby came out. She said they would try to get him intubated and stabilized so they could transport him to the NICU for further evaluation. She was well aware that we were not going to put him on the ECMO at Hopkins (FMH doesn't have one). She further stated that he wasn't eligible for ECMO since he was so small. We know this isn't true since he weighed 4 lbs 10 oz and there are smaller babies on ECMO; eg, 4 lbs 6 oz. We asked her if we would still have the decision to transport him to another hospital if we wanted to. She told us yes we would have that choice.
A doctor from neonatology department at Hopkins had called and told me since he was premature on top of having CDH and fluid around his heart, there was 0% chance of survival. Transferring my care there should not be an issue. There really was not need for this as to his outcome was fatal. This should have been enough for FMH to not do anything because they were basing their decision on the initial report of Feb. 21, that he had less than 1% survival chance and that is why they thought they should try to intubate.
We decided to stay there for delivery since I was close to home and we thought we were in control of what kind of care we wanted for our baby. I asked how long I would have to stay there before my contractions became consistent and they said it could be a couple of weeks. This was not the case. The nurses on the 7a.m. to 7 p.m. shift on the 23rd were great. The nurse who came on duty at 7 p.m. was not friendly and didn't want to do anything for me. My contractions started to pick up during the night. I was very uncomfortable around 3:30 a.m. I got a new nurse sometime during the night.