Faces of Loss, Faces of Hope

Betsy
Mom to Olivia Margaret
November 20th, 2009-November 23rd, 2009
Omaha, Nebraska

I could probably write pages and pages about Olivia’s story (I guess that’s why I blog about it, ha!). She was born on Friday, November 20^th, when I was about 34.5 weeks pregnant. At my 34 week appointment a few days earlier, my OB said that my fundal measurement was a little smaller than it should be. She recommended that we go to the perinatologist’s office to have them do a growth ultrasound “sometime within the next two weeks”, just to make sure everything was okay. My fiancé and I were extremely excited that we were going to get an extra ultrasound, because that meant extra pictures of Livie’s sweet face, so we made the appointment for two days later.

The moment the ultrasound technician turned on the monitor, I could tell something was wrong. She was the same technician who did our “big” ultrasound where we found out that Olivia was an Olivia, and not a Noah. She had been funny, and laughed and joked with us about pregnancy. This time, she was completely silent. After a moment or two, she said that she needed to go get the doctor, and she left the room. I looked at Kurt, completely terrified, and he tried to assure me that the doctor would just say that whatever the technician saw would be no big deal. I think he believed that, but I had a bad, bad feeling. The perinatologists came rushing into the room, and said "I've been watching this scan from my office on my own computer, and there are some very concerning findings" - my heart dropped to the pit of my stomach. The next thing she said went something like "There is water surrounding Baby's heart, and she has no amniotic fluid around her". I think she said a few more sentences, but I was in such shock that I can't remember. Then, she very quickly told us that we were going to deliver this baby by cesarean, and a team of people would need to examine the baby very quickly. All I said was "Wait... we're doing this.... TODAY?!". She said yes, and that she didn’t even want to wait for the Labor and Delivery team to come get me with the wheelchair, she wanted to walk me up to the 9th floor herself. Within 5 minutes I was changed into a hospital gown, and laying in a hospital bed in a recovery room getting my blood drawn and IVs put in.

Kurt stayed out in the hallway for a moment to call our parents and tell them what was going on. After that, he was with me for every second, even though technically he wasn’t supposed to be in the room while the anesthesiologist started my spinal block. Everything went so fast, and within 5 minutes of the block kicking in, Olivia was born. She let out two little cries, and I was able to quickly kiss her head before they whisked her away down to the NICU. Kurt was able to go with her, and got to watch while they connected her to a breathing tube and heart monitor, and a thousand other things.

The next 24 hours were full of ups and downs. No one had any idea if things were going to be okay, but we were all holding out hope. It turned out, that at 2lbs 11oz, Olivia was about half the size she should have been for her gestational age. She had fluid around her heart, which corrected itself, and her blood wasn’t clotting. There was also fluid/blood in and around her brain. After she was given plasma and several blood transfusions, her blood began to clot, and the NICU team was hopeful that it would stop the bleeding in and around her brain as well. Unfortunately, it didn’t.

Saturday morning, Kurt and I had a long talk with Olivia’s neonatologist, who explained all of these things to us. There was another scan set up for the next morning, and since all of the blood products they were giving her had been working successfully and her blood was clotting, they were hoping that it would work in her brain too, and the bleeding would at least stop getting worse. We were asked to start thinking about what we would like to have happen if in fact the results of the scan showed that the bleeding was getting worse. Draining the blood that had already accumulated was not an option, the neurosurgeons looked at Olivia and said that since she was so tiny and young, draining the blood would just make her even more sick than she already was. Basically we were told that if the blood kept coming, there wouldn’t be anything that they could do. Kurt and I talked about how we have to be optimistic for our little girl, but we both agreed pretty quickly that if it came down to it, we would not want to keep Livie on life support. I think both of us felt that day like we knew what was going to happen when those test results came back, but we kind of pushed it out of our heads as much as possible.

We agreed not to tell our families about the “bad” news that we received. We wanted our families to be able to visit Olivia and feel happiness and hope when they looked at her. No one deserves to live their entire life surrounded by people who are sad for them. We wanted our parents, sisters, and my grandma (the only people who were allowed into the NICU) to enjoy their time with Olivia. Besides, we had no idea what the results of the scan would really tell us the next day, and we figured that there was no reason to alarm everyone and send them all into a panic for no reason. Looking back, it was the best decision we ever made. We were able to take pictures of our family smiling while they spent time with her, and we have memories of everyone saying “congratulations!”, instead of just “I’m so sorry”.

As I’m sure is obvious, otherwise I wouldn’t be writing this story, that next scan came back even worse than the first one. Olivia’s entire brain had shifted to one side of her head, and the brain cells that were dying were releasing acid into her blood system.

Kurt and I both knew what this meant, but when Olivia’s doctor said, “What she’s trying to tell us is that she’s dying” I could feel both of our hearts break at the same time. She told us that what they were doing for Olivia already could keep her alive for days, or even longer, but that there would be a point where they would have to use things like chest compressions and increase support to keep her alive. We told the doctor without hesitation that there was no way we wanted to prolong anything. Ultimately, it would only cause Olivia to suffer worse than she already was, it would cause more suffering for Kurt and I (and our families), and it would create extra work for the NICU team because they would be basically just working toward a goal that was unattainable. Dr. O’Hanlon said that there was a small chance that Olivia could make it through this and survive. But that’s basically all it would amount to – surviving. She would not be able to live. Originally, they were saying that she would have brain damage, but they weren’t sure how much. They said it could be as minimal as a developmental disability, or mild cerebral palsy. Now, after the results from this scan, the doctor was telling us that IF she survived, she would have extreme mental retardation. She wouldn’t ever be able to know who we were, who she was, or who anyone was, and she would need so much medical attention that we would not be able to care for her ourselves. The choice that we made was not for ourselves, it was for our little Olivia. She was far too precious and perfect to be put through the pain of being hooked up to tubes, wires and cords for years. We felt that keeping her hooked up to her machines, even for days, would be too long. She was telling us that she was dying, God was calling her home, and we knew that we needed to let nature take its course.

Oh man, this is much longer than I intended for it to be. To make the rest of this long story short, we spent the day with Olivia. She was baptized by the hospital’s chaplain, and our pastor came up to visit and pray with us. We got to bathe her, put a bow in her hair, dress her in a little pink outfit, and make her hand and footprints. At the end of the evening, Kurt and I watched while the nurses unhooked her from all of her leads and cords. I wrapped her up in her special blanket that my sister made for her, and carried her to a private room. Kurt and I spent time alone with her first, and one of the nurses took pictures of us with her. Then, Kurt went to go get our family so that they could share part of this experience with us. Olivia passed away peacefully in the loving arms of both of her parents. We aren’t sure when exactly she died -- because since she hadn’t been breathing for a bit, we couldn’t tell. I’m glad for this, and we wouldn’t have it any other way. In all, she lived for about an hour and 45 minutes to 2 hours off of her ventilator. This time, Kurt wrapped her up and carried her back down the hall to her little bed in the NICU. Kissing Olivia’s little forehead and walking away from her bed was the worst, and hardest thing we’ve ever had to do.

It has since been determined that all of this was caused by a viral infection that Olivia contracted while I was pregnant. If I had had an ultrasound a few weeks earlier, this would have been detected, however it’s likely that no medical intervention during the pregnancy would have changed the outcome. More than likely, I would have been induced, and Livie would have survived for even less time than she did. I am so thankful that she was able to stay warm and safe for 34 weeks, and that we got to spend three whole days with her in the hospital. We love and miss her more than words can express.

Betsy blogs at Too Beautiful: Living After Losing Olivia

You can contact her at betsy.hills@yahoo.com