In late August 2010, when I was 36 weeks pregnant, I went to a regular OB appointment and learned that I had gained A LOT of weight for just two weeks and my belly was suddenly measuring three weeks ahead. My OB assured me that it was likely a growth spurt commenting, "They grow like teenagers at the end," but decided to do an ultrasound just to be sure. I left the office that day feeling confident that I was growing a big healthy baby boy.
The following Monday (August 30th), five days later, I went for the ultrasound. It was in a satellite office, and the equipment was not as good as my OB's, but it was the only place I could get in on really short notice. The technician was very nice and she happened to be the same one who had done my six week ultrasound with Elliot. She spent a lot of time looking at him, she noted that there seemed to be more fluid than there should be, and that there was some "shadowing" on his brain. She said that she would send the report to my OB, and we should follow up with her. At this point I was mildly worried, but when I spoke to my OB, she said that sometimes those offices make mistakes as their equipment is not as good, and she didn't want to jump to any conclusions until I was seen by Maternal Fetal Medicine.
I had another ultrasound Tuesday (August 31st) at the MFM clinic. They spent a long long time looking at Elliot. They showed us the extra vessels in his brain that were causing the "shadowing." They showed us his heart and told us that it was double the size that it should be. They explained that this was what was causing the extra fluid, his little heart was working so hard pumping all this blood to his brain that he wasn't processing the amniotic fluid the way a healthy baby would. The doctor was very honest and kind and told us that he had never seen anything in his career like that. He did an amniocentesis to try to determine if it was something genetic. He suggested that it could be something called a Vein of Galen Malformation, something that would require surgery after Elliot was born. He asked that we come back the next day for another ultrasound to make sure that Elliot was still doing ok.
The following day (Wednesday September 1st, one week after the36 week appointment) was a flurry of activity. Between sending emails and making phone calls to worried friends and family, I was talking with Children's Hospital, trying to determine what the next course of action would be. They would be the ones taking over my case, since Elliot would need a higher level of care once he was born. I remember going to the grocery store that day and a stranger coming up to me, looking at my big belly, and congratulating me. I said thank you quickly and walked away before the tears came to my eyes. Shortly before I was supposed to go to my appointment, I got a phone call from Children's Hospital wanting to arrange the details of my Thursday c-section. My response was, "What c-section? I'm not getting a c-section." She told me that that was the new plan, since Elliot was now 37 weeks, he should come out so he could start receiving treatment right away. I told her that I would be taking it up with the doctor at the ultrasound I was about to have. We made a last minute decision to have Nathan come with me to the appointment and Gavin to stay with a friend.
The MFM doctor told us that after talking to the doctors at Children's Hospital, Elliot almost certainly had Vein of Galen Malformation. He said that his ultrasound technician had made that discovery as well, as she recognized the symptoms from studying for her board exams early that spring. He said that according to the Children's Hospital doctors, it is extremely rare (about 100 births a year worldwide) and they had seen it at Children's, but very rarely.
We learned some things about VOGM. The Vein of Galen is a vein that exists in everyone. The malformation part comes in when there are excess arteries coming off of it with no capillaries, the "speed bumps" that slow blood flow. Because of this, Elliot's heart was working overtime to keep up with the demands of the malformation. They estimated that it was taking about 80% of his cardiac output. The way to correct the problem is when the child is big enough (usually after about six months) they go in and perform an embolizaiton, essentially placing coils in the excess arteries to block the flow and restore the health of the heart. From our limited research, we saw that children with VOGM typically had to undergo many embalizations in the first few years of life, but if the procedures were successful, they would survive and go on to be healthy, normally functioning children. We saw that over the last four or five years, there had been great strides made and the success rate had gone up, but we also read that about half the children born with VOGM did not survive.
When they did the ultrasound Wednesday afternoon they could see that Elliot's heart was failing. The blood that was supposed to be pumping through his heart was flowing backwards into his heart. The doctor told me that I had to have a c-section because given how weak his heart was, he would most likely not survive a vaginal delivery, and really there was no arguing with that. He said that Elliot couldn't wait for a c-section the following day, I needed to go to the hospital NOW. We frantically called family to make arrangements for Gavin, threw some things in bags, and headed to the hospital.
Because I had recently eaten, I had to wait to hours (HOURS!!) before I could have the c-section. It was agonizing. They were monitoring his heart rate and kept commenting how well he was doing. I wanted to scream. His heart rate had been fine the entire pregnancy, that was obviously telling us nothing. Finally I was taken back for the c-section and our sweet little Elliot was born at 11:46 p.m. When he came out I started to cry. He wasn't making any noise. It was the exact opposite of Gavin's birth, who cried bloody murder when he came out, was calmed by the sound of my voice, and was placed on my chest, making eye contact immediately. I couldn't see Elliot. They whisked him out of the room immediately. A good two minutes later after they had given him some oxygen I heard him cry. The rest I know from Nathan as I went to recovery by myself and Nathan thankfully was able to go with Elliot to the NICU. Once they got him stable outside the OR they brought him in so I could see him and kiss him for a brief second and then they RAN with him to the NICU. There they put him on the CPAP, got him all hooked up to monitors and did an echo cardiogram to look at his heart. The cardiologist said that while the Interventional Neuroradioligy team (those who would be doing the embalization) might want to wait to do the first procedure, based on the condition of the heart, the sooner the procedure was done, the better.
While all of this was going on in the NICU, I was being taken to a room in recovery. I was regularly demanding things, like seeing my son, getting a pump, eatting . . . They looked at me like I was crazy that I wanted a pump - getting breast milk was pretty low on the priority list for Elliot - but it was really important to me. It felt like one of the only "mom" things I could do for him after carrying him for nine months.
Finally, around 5 a.m. I was able to prove that I could feel my legs again and they got me a wheelchair that I forced myself in to and the nurse and Nathan took me down to see my baby. The definition of agony might be seeing your very sick brand new baby and not being able to hold him.
Thursday (September 2nd) evening while sitting next to Elliot's bedside, I casually asked his nurse, "When do you think we will be able to hold him?" She surprised us by responding with, "Let's give it a try now!" She had me sit in a recliner next to his bassinet, and with the help of another nurse carefully placed him in my arms. It was bliss. My heart melted. I felt so happy, and I really just wanted to jump up and run with him. And by the grace of God, all of Elliot's "numbers" (i.e. his blood pressure, respiratory rate, the oxygen levels going to his major organs) got better while I was holding him. Miracle.
Earlier in the day on Thursday they did an MRI. It took several hours and two separate doses of sedation for Elliot to remain under during it. Friday morning (September 3rd), we were able to go over the results of the MRI with Elliot's neonatal doctor - a great man who was extremely kind and patient. He showed us the images of Elliot's head in shadow and the excess arteries being lit up in white. It looked like someone had dropped a bowl of noodles on Elliot's brain. They were just everywhere. They were worse than all of the MRI images we had looked at online while researching VOGM, and not just because they were the images of our son. The doctor told us that this was the worst case that they had seen and very calmly and kindly told us that no one would think less of us if we chose not to have the embalization. We left the meeting with the doctor, went back to Elliot's room, and cried. We decided at that point that we would be grateful for each and every second that we got to be Elliot's parents. We also decided that there was no way that we could decide to not do the procedure. With it we felt like Elliot had a chance at life, however small that chance may be. Without the procedure, we would watch our little boy slowly die of heart failure. Though I wouldn't say that we lost all hope that day, things definitely changed. It suddenly became very real that we might lose our son.
Prior to Friday we had limited visitors to our parents and Gavin. We only got 12 visitors total no matter how long he was in the hospital, and we couldn't take one off and put someone else on. We felt like we were in it for the long haul, so we didn't want to put anything down in writing before we had a better sense of how things would play out. After the MRI that all changed. We added our siblings to the list as well as a dear friend who in the event of his death would do his eulogy. And everyone came. They flocked back to the hospital and visited Elliot. I remember standing in the hallway outside of Elliot's room with my brothers who had managed to be a little goofy while fawning over their nephew and us in a three-way hug sobbing together. And then there was his Uncle Justin, who he was named after (Elliot Justin) who came everyday from the day we allowed visitors on, sometimes several times in one day.
Throughout the following days we watched Elliot's health go slowly downhill. At times he needed the CPAP, and then he would need to go back on the ventilator. He needed a couple blood transfusions. He was no where near being able to get breastmilk, but I pumped religiously, waking up every three hours during the night, wanting to believe that I was doing something tangible for Elliot. They let us take the breastmilk and swab his mouth with it. He would vigorously suck at the swab, making me so happy and so miserable at the same time. The nurses let us change his diapers, realizing that we needed to do those little things for him. And we held him as much as they would let us, and as with the first time, his numbers got better each time.
On Monday (September 6th), while I was at the hospital visiting Elliot by myself, Elliot's doctor came in and said that the Interventional Neuroradioligy team wanted to do his procedure that day. I freaked out. I from the first day, when a doctor sat us down and told us about how the other cases seen at Children's had turned out (of four, only one survived, the others either didn't make it to have the surgery done, or were so small and bled out during the surgery), had thought that if Elliot had to have his surgery early on he wouldn't survive. I felt it in my bones. So being told that he was about to have his procedure in my mind was the same as telling me that I needed to say goodbye. I was crying when I called Nathan and he rushed to the hospital to be with us. The procedure had originally been planed for 10 to 11 days after his birth, and we were only on day five. After a lot of back and forth, they decided that it was best to wait to do the procedure until Wednesday (September 8th).
Tuesday night (September 7th) we went to spend time with Elliot, planning on staying late since his procedure would be early the next morning. Elliot's Uncle Justin came by to see him, and brought Green Eggs and Ham to read to him. The most amazing thing happened. Elliot opened his eyes while Justin was reading, kept them open the entire time, and then closed them the second he was done. When Justin got ready to leave, we told Elliot he was going and he squinted up his eyes and let out a silent scream, unheard by us because of the ventilator. It was like he knew that his special time with his uncle was over.
The nurse that night did not let us hold him. I had held him earlier in the day, spending a long time snuggling him while Nathan was with Gavin, but Nathan had yet to hold him that day. I know that she was just doing her job, but I was so angry. She thought his numbers were just a little off, and she wanted him to be in good shape for his procedure the following morning. She tried to get in touch with a doctor to ask, but was unable to reach them. It was maddening. Especially because in the back of my mind I couldn't help but wonder if it would be our last chance to hold him. We finally left around 11, and got a phone call from her shortly after going home saying that she spoke with the doctor and if we came back around 5:30, we could hold him before things got underway at 6:30.
Elliot's embolization was Wednesday (September 8th). Several of our loved ones stopped by to see him that morning before things got going. We all stood around Elliot's bassinet as the anestisiologist prepped him. Then we walked with him from his room to the O.R. Outside we said goodbye to him, whispering prayers in his ear. One of his doctors said to us before going in, "I'll be praying for you," to which we responded, "We will be praying for you."
Later that day, about six hours later, we would learn that things were going very well intially. He handled the anestigia well, and they started threading in the catheder. They were able to block off one of the arteries, and were heading to another, when suddenly things went downhill. It turned out that one of the arteries burst and he bled out. They called in a neurosurgeon, but he was unable to drain the blood fast enough. They told us that they couldn't really know the damage for sure, but likely he was brain dead. A CAT scan later that day confirmed that he had no upper brain functioning. When we went to his bedside, everything had changed. The little boy who had the most amazing and peaceful spirit was gone, and only his body remained.
On September 9th, 2010 we said goodbye to Elliot, holding him as he passed away.