I don’t think it’s going to get any easier for me to write this, and my memory isn’t getting any fresher, so I’m just going to start. Warning, though, this might be kind of disturbing to read. I don’t know if this will help anyone, or if it will help me to write it, but it feels like I need to write it to finish the story.
We left Lucy on the morning of Friday, May 18th. She’d had a few good days, and Dr. P thought she’d be fine if we went home. We packed our stuff, visited her in the morning, and David held her for a while. When we left, she seemed like a happy, healthy baby.
Friday and Saturday, we actually started to get a few things done at the new house. We mowed the lawns, put together the changing table, and started putting together Lucy’s new crib. We were doing so well, and were so comfortable with how well Lucy was doing, that we thought maybe we’d stay just one more night to finish the crib. When I called to check on her Saturday afternoon, though, her nurse sounded a little worried because Lucy wasn’t peeing enough and was getting swollen. Of course we decided to go back to Bakersfield. We finished eating dinner, then drove back. Honestly, I was a tiny bit irritated, because we were finally getting things done, and I was sure the nurse was overreacting. I mean, Lucy had never had trouble peeing, and she had been swollen before. I fully expected it to be nothing.
When we got back, we went straight to the hospital. Lucy was a different baby than she was when we left. She was swollen, and she seemed sick, which she never really had before. I know that sounds strange, because she was being kept alive by life support her whole life. But there’s a difference between a baby who is premature, and a baby who is premature and sick. Lucy never seemed sick before – she was always active, never really lethargic, and always responsive. This Lucy just laid there, looking swollen.
Oh God, this is so hard.
Her poor little body was so bloated. She held our hands and looked around at us once in a while, but didn’t do much of her characteristic squirming. She still hadn’t peed. Dr. P said her kidneys weren’t working – she was in renal failure. They were giving her alternating doses of saline and diuretics to try to perfuse her kidneys, but nothing worked. We went back to the Ronald McDonald House late that night to sleep a little and clean all the pumping equipment, but went back to the hospital at 5 am when their last dose of diuretics still hadn’t worked. I called my parents, who came immediately (as soon as my dad turned around from his trip to the airport, where he was supposed to catch a plane for work). This is where things start to be fuzzy and confusing for me, because we hadn’t slept and everything was just happening so fast, so I’ll just try to relate what I can remember.
On Sunday morning, with my parents there, we had Lucy baptized by the hospital chaplain. It was really nice, and many of the nurses joined us for the ceremony. David’s parents made it not too long after that, and sat in the waiting room with my parents. Other than that, David and I spent most of the day just sitting with Lucy. I don’t remember what we ate or what else we did, except that David and I took turns trying to nap out in the car. That didn’t go so well. Dr. P was continuing to do blood gas tests to monitor her blood pH, among other things, and they were never good. Her breathing got really bad at one point, and she was up to 100% oxygen. They were able to get it down a little later, but she was having a hard time breathing.
What had happened was that the yeast infection she’d been battling was becoming too overwhelming. They’d just discovered that it was resistant to the antifungals, so they were starting to try a different, more potent drug (with worse side effects, of course). As far as I understand it, the infection had sort of settled into the lining of her intestines, making them swell a lot. All of the liquid in her body was going into swelling, instead of into her kidneys, which is why she’d stopped peeing. Dr. P still thought it was possible that it could all turn around if her kidneys would start working again, so that’s what we were hoping for. It was so painful seeing her like that and not being able to do anything. We just sat there, telling her over and over that we loved her and that we were so proud of her. All we could do was hold her tiny hands and let her know we were there.
By that evening, she was gray, and so lethargic. All of her grandparents had been in to see her, and she was awake, alert, and looking around at all of us. At some point, though, she lost her ability to focus, and I don’t think she could see us anymore. I remember thinking several times during that Sunday that she wasn’t going to make it, and I felt awful, because David and the doctor still seemed to have some hope. I felt like I was giving up on her when I told her that it was okay if she needed to leave, but I just couldn’t stand seeing her like that.
Dr. P was really really trying, all this time, to come up with some way to help her. He thought of dialysis, of course, but her platelets were way back down, so that wasn’t an option (and she would have needed to be flown to another hospital for that). Her blood pressure was really really low as well, and they were trying to treat that with dopamine and dobutamine, with little success. Her nurse that day worked diligently and tirelessly to take care of her, and that night, when she was pricking Lucy’s heel yet again to take blood for another blood gas, I was so distressed. I said “is that really necessary at this point?” But Dr. P was still trying. He toyed with the idea of putting her back on the oscillator, and I just looked at him and said “Dr. P, do you really think that could help at this point? Can anything help at this point?” He sort of reconsidered, then went to confer via phone calls with some of his colleagues. I think he just really wanted to save her, but he needed someone outside the situation to tell him it was time to quit. Of course, I don’t know that for sure, but I do know it was hard for him (and her nurses and RTs, of course) as well.
At that point, it was late Sunday night. We knew we were near the end, we were just waiting for the doctor’s official say. Lucy was worse than ever, although I feel that she still knew we were there, even if she couldn’t see us. Even though she was just lying there, whenever one of us held her hand, she would squeeze back. Dr. P finished his phone calls and came in to talk to us. By then, the wonderful nurses had cleared out the nursery (then empty) for our parents, so they could be closer. The doctor told us that there were a few things they could still try, but they had almost no chance of success, and would be very invasive and probably painful. The swelling had gotten to Lucy’s brain by then (which is probably why she couldn’t see us anymore), so even if her kidneys did start working, she would have neurological problems that would most likely kill her anyway. And with her body all gray like that, we could see that her right lower leg was bright red and even more swollen – the infection had gotten into her bones, which definitely wasn’t helping her platelets. Dr. P told us there was basically zero chance of her ever coming home, and we knew it was time to say goodbye.
Lucy’s grandparents all came in to see her, then things happened quickly. Lucy’s nurse and respiratory therapist, both of whom were there the night she was born, carefully removed all the wires and IVs. They gave her a large dose of pain medicine, enough to be sure she wouldn’t suffer. I brushed her hair with a soft little brush, because she always liked having her head touched. We changed her last diaper. Other than that, we held her hands the whole time they were getting her ready, and she kept squeezing our fingers the whole time. We just kept up a non-stop stream of “we love you Lucy, we love you so much. We are so proud of you, sweetie, don’t be scared, we’re right here.” Oh God, I hope she wasn’t scared.
Then David and I went to sit with our parents while they removed her breathing tube. They wrapped her in a soft little blanket and brought her in to us. They gave her to David first, and left us alone. After a minute, David handed her to me. It was the first time I’d ever seen her face without all kinds of tubes, and she was beautiful. It was also the first time I’d been able to hold her normally. I have to admit, I had this irrational hope that they would put her in our arms, and she’d just miraculously keep breathing, and that she’d be okay. That’s not what happened, though. As I held her, I kept talking to her, and I kissed her head, and her mouth, and her cheek. I noticed when she started getting cold, and I just wanted to keep her warm. I wanted to warm her up, but I couldn’t.
Ten minutes later, Dr. P came and listened for her heart, and told us that she had died. He then left us with her, and came back to do a final check 10 or 15 minutes later. All of Lucy’s grandparents got to hold her for the first time then, and then we held her a few minutes more. It was so hard to let go of her, but after a little while I kissed my angel goodbye and we asked the nurse to come get her – she was gone. That was around 12:30 am, Monday, May 21st. The worst day of my whole life.
As I’ve said many times before, losing her is the most awful thing that has ever happened to us. It’s been devastating, and I still cry every single day. But I’m so grateful that she was able to die like that, if she had to die that early at all. She went peacefully to sleep in the arms of her parents, surrounded by her grandparents. She didn’t suffer much, I think, and I hope that she knew how much we loved her – that she couldn’t possibly have been loved any more than she was.